The coverage mandates these parents helped secure have driven hundreds- and even thousands-fold increases in Medicaid spending on ABA 鈥� an unproven, even harmful, behavior modification system that uses rewards and punishments to try to eliminate certain behaviors.

Over the last decade, the ready flow of cash has attracted private equity, a type of investment that purchases large shares of companies that are not publicly traded. Through cost cutting and other restructuring methods, these short-term investors try to boost revenue before selling the businesses for a profit. With scant state or federal oversight, they have also acquired nursing homes, facilities for people with intellectual and developmental disabilities, medical equipment providers and other healthcare industries that rely on taxpayer dollars to profit.      

Now, states 鈥� which put few regulatory guardrails on the ABA industry, on private equity鈥檚 role in healthcare in general or on Medicaid reimbursement 鈥� are cracking down. Even before a series of damning federal commissioned by the Biden administration were released in recent months, lawmakers and health officials have proposed capping the amount of ABA an individual child can receive and how much providers can bill, as well as imposing standards on clinics and therapists. 

As states have revisited Medicaid reimbursement rates and other policies that impact providers鈥� financial bottom lines, two types of ABA-related debates have played out in statehouses. One involves the ABA industry鈥檚 entrance into state-level political spending; the other, efforts by providers and caregivers to require public schools to allow the therapist of a family鈥檚 choosing to accompany their student to class.  

The start of statehouse spending 

Individual state legislative races are relatively cheap to influence. While parents have long packed hearing rooms to testify against threatened cuts to autism services, in recent years some of the industry鈥檚 largest, private equity-owned ABA providers have begun making campaign donations to candidates for state-level office who could sway legislation on ABA oversight, Medicaid reimbursement rates, whether private autism therapists should be allowed in schools and other laws that impact providers鈥� profits.  

Lobbying and campaign finance reporting requirements vary widely from state to state. Using records compiled by the political spending watchdog group Open Secrets, 社区黑料 was able to identify instances when ABA lobbyists donated to state-level campaigns around the country at consequential moments, to benefit the companies the lobbyists represented. 

In 2022, Florida lawmakers passed a law allowing behavior technicians from private, for-profit ABA centers to accompany kids to school 鈥� opening a new and potentially lucrative market. While reimbursement rates vary by state, private ABA centers typically bill insurers for behavior technicians鈥� time at $50 to $100 an hour. Special education classroom aides employed by public schools, in comparison, frequently make about $25 an hour.  

Campaign contributions made that year by two of ABA鈥檚 largest private equity-owned concerns, Hopebridge Autism Therapy Centers and Acorn Health, would barely cover a lobbyist鈥檚 bar tab at a Washington, D.C., watering hole. 

Hopebridge Autism Therapy gave a total of $10,000 to nine incumbent lawmakers and one challenger. Acorn Health gave $7,500 to the state House Republican Campaign Committee and $3,333 to the Florida Republican Party. 

It was a small expense for two of the country’s largest autism therapy companies, which between 2019 and 2024 brought in almost $200 million 鈥� nearly $134 million for Hopebridge and more than $63 million for Acorn, according to a 74 analysis of Medicaid ABA billing records. 

The largest company by Medicaid revenue, Centria Healthcare, was paid more than $400 million between 2019 and 2024, according to 社区黑料鈥檚 analysis. The company spent almost $200,000 in Oregon and Indiana in three election cycles: 2020, 2022 and 2024. 

In 2024 in Indiana, where a federal audit would soon find up to $133 million in improper Medicaid ABA claims from multiple providers, sparking caps and cuts, Centria gave $25,000 to gubernatorial candidate Michael Braun.

As governor, Braun created a state applied behavior analysis to consider ways to rein in costs while continuing to serve autistic children. The group鈥檚 membership is dominated by ABA practitioners.

In Oregon, the company gave former Rep. Dan Rayfield $55,000 during his last two terms as House speaker, followed by $25,000 for his successful 2024 run for attorney general. The state House Democratic Campaign committee received $50,000, while 13 other lawmakers got contributions of $1,000 to $10,000.

On the table: A to expand the state鈥檚 private insurance autism therapy mandate until 2030 and a to extend Oregon鈥檚 ABA mandate to conditions other than autism, such as intellectual and developmental disabilities 鈥� potentially opening significant new markets. The law mandating continued coverage of autism treatment was enacted.

The bill to expand the disability categories for which ABA practitioners can be reimbursed faced significant pushback. Testimony submitted to lawmakers included of research on the therapy鈥檚 effectiveness for conditions other than autism, such as Down syndrome, cerebral palsy and epilepsy. It concluded the evidence is thin. The measure is still pending in the state House. 

Facing Medicaid rate cuts, Utah Behavior Services (now known as Bridgeway Integrated Healthcare Services) 鈥� with Medicaid revenue of some $196 million, according to 社区黑料鈥檚 dataset 鈥� spent some $41,000 to influence 21 contests, including state auditor. Action Behavior Centers, which collected $1.7 million in reimbursements between 2021 and 2024, spent $2,500 .  

Must schools allow private ABA in classrooms?

Special education law requires schools to provide 鈥渕edically necessary鈥� services to children whose ability to attend school and learn depends on them. For the most part, school districts can pass these costs along to Medicaid or another public healthcare plan, or to a family鈥檚 private insurer.   

Commonly cited examples are children who need a nurse to manage their airway or feeding tube, or have a condition that requires physical therapy. Historically, ABA has not been recognized as a medically necessary service. Schools typically try to meet students鈥� behavioral and communications needs in other ways.    

In 2022, two Colorado lawmakers introduced a bill to require school districts to enshrine autism therapy as medically necessary. Administrators from the Colorado Consortium of Directors of Special Education, the Englewood and Cherry Creek school districts and others expressed concern with the bill. 

They would be liable for the in-school conduct of a technician they don鈥檛 employ, several of those commenting said. And, most practically problematic, schools would be legally responsible for figuring out how to make up the academic instruction that students would miss while engaging in therapy during the school day.

The General Assembly eventually passed a version of the bill not specifically addressing ABA. Instead, it requires districts to have policies outlining how they will address medically necessary services.  

Louisiana and Pennsylvania recently enacted laws saying schools must accept autism therapy technicians. The requirements are too new to assess results.

This investigation was produced with support from the Education Writers Association Reporting Fellowship program.

Jenny Thamer had low hopes for the meeting called by the superintendent of the Boulder Valley School District to hear from families of autistic students.

From her experience, such so-called listening sessions are often pro forma events, staged more to assuage parents than to actually brainstorm change. 

This one had been called hastily, after a handful of caregivers had complained about persistent problems in their children’s classrooms. 

The meeting was scheduled for the day after Memorial Day, after the end of the Colorado district’s 2022-23 school year. Many families would likely have already left town for summer vacation. 

Worried no one would show up, Thamer and a couple other parents put together an anonymous online survey they could present if attendance was low. 

They need not have feared. Some 50 district parents came, cautiously optimistic that Superintendent Rob Anderson would hear their pain. 

鈥淚 have to give him credit,鈥� says Thamer. 鈥淗e listened to every single caregiver story without interrupting, without rushing people. Like, he was there for it.鈥�

The meeting was scheduled to last an hour, but went on for more than four, as families described repeated phone calls from school staffers demanding they pick up their child midday, kids too anxious to go to school, trauma caused by punishments 鈥� and, in nearly every case, schools鈥� lack of interest in parents鈥� ideas.

As it happened, Anderson鈥檚 own child received special education services. 鈥淚 could understand not just in a way a superintendent could understand,鈥� he recalls, 鈥渂ut as a parent could.鈥� 

While people talked, administrators and the school board president took notes on poster-sized pads stuck to the walls. At the end of the meeting, the parents presented the leaders with the results of their survey, which drew 65 responses.

Anderson listened. And then he promised to create an autism advisory team made up of parents, community members and staff with a goal of using feedback from autistic people 鈥� who usually are not consulted about their own conditions 鈥� to change the district鈥檚 approaches. Thamer, whose child received special education services, was asked to co-chair the team. 

A year later, Boulder Valley implemented what is likely the nation’s first 鈥� and only 鈥� neurodiversity policy. Adopted by the school board in 2024, it commits district schools to using 鈥渟trategies to affirm a student’s identity, rather than trying to 鈥榝ix鈥� or 鈥榗ure鈥� them.鈥� The policy applies to all kids, not just autists. 

It鈥檚 a work in progress 鈥� in part because the policy calls for a sea change in how Boulder schools have approached educating autistic students. Intending to provide good services, the district 鈥� like a handful of mostly affluent school systems across the country 鈥� had invested heavily in hiring practitioners of an intervention called applied behavior analysis. 

Commonly referred to as ABA, the therapy was pioneered in the 1960s by Ole Ivar Lovaas, the UCLA psychologist who created LGBTQ conversion therapy. Both use a system of rewards and punishments to condition a person to act and appear 鈥渘ormal.鈥� Lovaas’ approach was quickly recognized as a human rights violation when applied to LGBTQ people, but not to autistic kids.

Lovaas did not see autistic children as fully human, which he believed justified using electric shocks, slaps and the withholding of food, among other 鈥渁versives,鈥� to 鈥渆xtinguish鈥� atypical behaviors. In a trial now regarded as dangerously flawed, he claimed to have 鈥渞ecovered鈥� 鈥� cured 鈥� nine of 19 children by subjecting them to repeated 1-on-1 drills for up to 40 hours a week.

The Lovaas Method, as ABA was originally known, is now considered the gold-standard autism intervention. Parents are typically urged to enroll their children as quickly as possible after diagnosis, as young as 2, to give them their best shot at a 鈥渘ormal鈥� life.  

Over the last decade, as laws were enacted requiring insurance coverage of autism diagnosis and therapy, the rate at which children have been identified as autistic has tripled. To serve them, a very profitable and largely unregulated treatment industry has mushroomed, pulling in nearly $2 billion a year from Medicaid alone.     

For-profit ABA is particularly strong in Colorado, in large part because of the state鈥檚 history of offering relatively generous benefits for people with disabilities. Because of ABA’s dominance 鈥� and the accompanying perception that it is the most effective way of treating autistic children 鈥� school districts are increasingly turning to practitioners to staff their special education programs, whether or not it is the proper approach for a particular child.      

Modern practitioners defend the intervention, saying ABA no longer subjects children to physical punishment. Yet documentation of its harms is mounting, as researchers 鈥� including autistic adults who underwent ABA as youngsters 鈥� gather evidence that the therapy has caused widespread PTSD. Autistic children may no longer be subjected to electric shocks or slaps to the face 鈥� and the word “aversive” may sound kinder than “punishment” 鈥� but they are routinely denied food, toys and comfort items, as well as adult attention, a strategy practitioners industrywide call 鈥�.鈥� ABA providers still frequently restrain children or confine them in isolation 鈥� practices recognized as so dangerous and traumatic as to be illegal in most circumstances in Colorado schools.

At the listening session, Thamer presented the superintendent with the results of the survey, which echoed what he had heard from parents in person. One-fourth felt the need to shorten their child鈥檚 school day because teachers could not provide a full day鈥檚 support, and nearly half had unenrolled or considered withdrawing their children. 

One-third of respondents said they had been asked to pick their kids up early from school for behavioral reasons 鈥� some frequently. A fourth said their children had been excluded from field trips and other activities. And 13% had out-of-school suspensions and 9% in-school suspensions.

Some 16% were aware their child had been subject to physical restraint or seclusion 鈥� likely a wild undercount, given the number of parents at the in-person meeting who said their kids were restrained several times a week. Historically, Colorado did not require schools to report restraint until two years ago, and still doesn鈥檛 mandate data collection on seclusion. 

More than 40% said schools focused on fixing behavior rather than uncovering the reasons for it; paid more attention to students’ 鈥渓agging neurotypical skills鈥� than to their capabilities; and used inappropriate instruction strategies. 

The families鈥� experiences were common, but the opportunity to share and be believed was novel, says Thamer. Many of the caregivers at the listening session were meeting one another for the first time. Many had assumed they were alone in rejecting guidance from the district鈥檚 supposed experts, or that no one would believe the 鈥済old standard鈥� in treatment was actually making things worse for their children. 

Just sitting in a room with so many other people sharing the same experiences was cathartic. 鈥淚 had tears hearing other people’s stories,鈥� Thamer says. 鈥淧arents carry a lot of trauma from advocating for their kids.鈥�

‘Daddy, help! Daddyyyy!’ 

One of the parents present was Sarah Piril盲. In 2019, she had come home from work to hear her 5-year-old screaming in the basement. He was working with two technicians from a local private ABA center who, in an effort to stop a meltdown, had barricaded him in a room and turned their backs on him.  

This was not a new experience for P, who is being referred to by his first initial to protect his privacy. He had been through this rewards-and-aversives cycle at home, in private childcare centers 鈥� which were quick to show the family the door 鈥� and even public school-based early childhood education. As he got bigger, so did his meltdowns.          

But on this day, Piril盲 says, she heard something very different in P鈥檚 screams. 

鈥淒addy, help,鈥� he shrieked. 鈥淒addyyyy!鈥� 

She bolted down the stairs and instantly recognized that her son wasn鈥檛 being stubborn. He was terrified.

A series of realizations crystalized in an instant, she recalls. P was being punished, over and over, for not understanding what was expected of him.

In the process, he had learned to fear interactions where he could become overwhelmed and lose control. And his parents, whom he needed to keep him safe, had invited the people meting out the punishment into his life.

In schools, isolating or confining children is known as seclusion and restraint. The psychological and physical harms are . Most states have laws limiting the practices to rare episodes in which students pose an immediate threat to themselves or others.  

Yet P鈥檚 therapists were using the tactic on purpose, in the belief that after enough repetitions 鈥� delivered under the guise of benign therapy 鈥� it would 鈥渆xtinguish鈥� some of the boy鈥檚 autistic traits.

On the surface, the goal seems perfectly rational: Grownups were trying to teach P that following instructions brings rewards. But when he didn鈥檛 comply, they鈥檇 double down, sensing defiance. The stricter the adult, the more dysregulated the child鈥檚 response. 

Piril盲 knew ABA practitioners often describe the moment she was witnessing as an 鈥渆xtinguishment burst鈥� 鈥� a last willful attempt by children to get their way by ratcheting up negative behavior. If she went to P鈥檚 aid, in the therapists鈥� eyes, she would be guilty of setting back their hard work.   

She faced a horrible dilemma: follow the therapists’ advice and let the moment play out, or listen to her gut and defy experts who could document her poor judgment in a file with P鈥檚 name on it.  

In the moment, she chose her son, scooping him up and letting him cry.

She had no way of knowing how hard it would be, even after telling the boy鈥檚 private therapists she would no longer tolerate ABA鈥檚 strategies, to keep P out of the therapy. 

Over the next seven years, the district would move him to five schools, not counting distance learning during COVID and a year when P was so traumatized that Piril盲 homeschooled him. In all but one of the schools, he was subjected to ABA.

But she had an unlikely ally. The behavior technician who had stood nose-to-nose with Piril盲 in her basement is a man named Blake Ross. And that confrontation marked a watershed moment for him, too.

The core epiphany Piril盲 had during the episode was that P鈥檚 meltdown had been perceived by the adults as a choice, when in fact it was an involuntary stress response 鈥� the fight-or-flight instinct that鈥檚 a normal part of the human nervous system. Everyone has it, but it鈥檚 especially easy to trigger in a child with an acutely sensitive neurotype. 

Ross adored P. He was devastated to realize the boy was scared of him. 鈥淭here are protocols for stuff like this,鈥� he recalls. 鈥淲e were following them, and it was making things worse.鈥�

In the ensuing weeks, Ross and Piril盲 came to an understanding. The family couldn鈥檛 meet the boy鈥檚 needs alone, and Ross was committed to finding a better way to help. Together, they started trying to understand how entrenched P鈥檚 fight-or-flight responses were, and what would happen if they developed strategies to help his nervous system avoid that traumatic response. 

Things really clicked during third grade when, with help from Ross, Piril盲 started homeschooling P mid-year. With their strategies finally working, the following year Piril盲 searched for a classroom where the adults would try what she called 鈥渘euro-informed accommodations.鈥�   

In the meantime, seeking the flexibility to use their new approach with other kids, Ross and his wife, Jenn Snow, also an ABA provider, had started their own autism therapy practice. They met with Piril盲 and the members of P鈥檚 prospective school special educators to talk about their work.  

鈥淟uckily, we found a team that would actually try it,鈥� says Snow. 鈥淎nd to magnificent effect.鈥�

A data-minded mom literally charts a new course

Before she quit her job to manage P鈥檚 needs, Piril盲 was an engineer and data strategist. Both ABA and special education are supposed to be data-driven. The theory behind ABA 鈥� the analysis being applied, as it were 鈥� is that therapists record a child鈥檚 responses to behavioral drills, routines and tasks, and then use the information to refine their tactics.

An individualized education program, the legal document that spells out how special education will meet a child’s needs, is also supposed to contain quantifiable goals and measures of progress, as well as information on behavior, adult time spent delivering services and the amount of time the student spends in a segregated classroom rather than integrated with typically developing peers. 

All special education parents quickly accumulate boxes of IEP-related documents, but Piril盲 had more: reports P鈥檚 schools sent home when he was physically restrained or isolated, forms announcing he had been suspended and messages asking her to come pick him up early. 

Because P, like many autistic kids, often refused to go to school, Piril盲 tracked his attendance. She also recorded how often he met the school鈥檚 behavior goals, his reading and writing achievement, how much time he spent in different classrooms and how many special ed services he received. 

In January 2025, after P had been enrolled in a new district school willing to work with her ideas, Piril盲 put 340 pages of IEPs and other documents 鈥� 4,000 data points collected over eight years 鈥� into a database. The results were striking.

When P was being treated with ABA, he achieved the school鈥檚 behavioral goals 25% to 50% of the time. When he was in a classroom where the adults were willing to try Piril盲鈥檚 neuro-informed strategies, his success rate was 75% to 100%.

When he was allowed to spend fewer hours and days in the school environment, his attendance actually stabilized 鈥� and his reading and writing scores shot up. As P鈥檚 fight-or-flight episodes subsided, he grew more willing to work on his least-favored tasks. As adults listened to him when he advocated for himself, he spoke more frequently.  

Piril盲 created a presentation for P鈥檚 teachers and aides, with two dozen charts showing how his IEP and ABA interventions fluctuated in effectiveness. There was a one-year window 鈥� labeled 鈥渁utistic burnout鈥� 鈥� when P was restrained 20 times, sent home another 20 times and suspended three times. 

But there were also slides listing which specific, neuro-informed strategies were in place when things were going really well: 鈥淧hysical management is to be avoided entirely鈥�; 鈥淧roactive is better than reactive鈥�; 鈥淧鈥檚 words must work or he will stop using them鈥�; 鈥淔lexibility from you = flexibility from P.鈥�

At the start of the last school year, the boy鈥檚 teachers stopped pushing ABA, Piril盲 says. But when she gave them a draft IEP written from a nervous system response lens, the educators in charge of the planning process rejected it.

Everybody on the IEP team agreed with the support plan, she says. But one team member, an ABA practitioner employed by the district, said they needed to rework it to conform with ABA鈥檚 structure. 

In Boulder Valley classrooms, what that has historically meant is that when a student exhibits a problematic behavior, educators must create a hypothesis for why it鈥檚 occurring. These hypotheses assume the child is choosing to misbehave, e.g., to get attention or to avoid an activity they don鈥檛 like. Then the therapists and teachers create goals that outline the steps of an ABA strategy for addressing the student’s actions.

鈥淭he [lead therapist] said the way I wrote it from a nervous system response perspective was much more helpful,鈥� says Piril盲. 鈥淏ut then [she] also said that she can鈥檛 use that structure, that she wasn鈥檛 able to structure an alternative path for families like mine that specifically request non-ABA approaches.鈥�  

The format of a support plan may seem like a small thing to someone who has not struggled to get their child an atypical IEP, Piril盲 says. But to her, it suggests the adults in the district are not ready to step away from something that鈥檚 not working.  

A shaky substitute for real special ed       

In 2022, the Colorado General Assembly took up a bill to allow families to request an ABA therapist of their choosing be allowed to accompany their child to school. Legislators ended up passing a dramatically amended law requiring districts to have a policy addressing the question. 

The debate, however, revealed that much of the time, schools and families were using private ABA therapy to make up for gaps in special education, childcare and disability services writ large 鈥� something also highlighted in federal audits of Medicaid spending in Colorado and several other states.   

Many of the therapists and industry representatives testified that their clients didn鈥檛 have time for both ABA and school, attended schools that had declared students鈥� needs too profound to manage or said that because they were understaffed, they could support autistic students for only a few hours a day. 

The parents who urged passage of the bill said they needed ABA to close a caregiving gap. Several said schools and preschools were quick to demand they pick their kids up midday 鈥� sometimes threatening to call the police if they didn鈥檛.

鈥淪chools are happy to abbreviate their day and make this someone else鈥檚 problem,鈥� said one. 鈥淎nd I just don鈥檛 think that鈥檚 right.鈥� 

Other parents said their kids were behind academically because they split their time between a therapy center and school. 

A lack of school staff with autism expertise and of out-of-school caregiving options for families are real problems, says Julie Reiskin, co-executive director of the Colorado Cross-Disability Coalition. But behavioral therapy is not intended to address those problems. 

鈥淲e need to have childcare and schools that are not calling parents, that can keep their kid through the whole day,鈥� she says. 鈥淏ut if that’s the need, then that’s what we should be funding, not one specific kind of therapy. 

鈥淲e could do it for a lot less money than this,鈥� adds Reiskin. 鈥淎nd maybe the kids will also be having more fun.鈥� 

Lindsey Trott told lawmakers there are more effective methods for helping students than ABA, but that schools lack the resources to use them. She鈥檚 now an occupational therapist, but as a teenager in the late 1990s, she was hired by a family that was implementing the Lovaas Method in their home with their nonverbal 4-year-old.

For 10 months, three days a week after school, Trott said in an interview with 社区黑料, she would sit with the boy and perform what are known in ABA as 鈥渄iscrete trials鈥� 鈥� repetitive drills of tasks like making eye contact or copying a structure made of blocks. She rewarded his compliance with a fruit snack or a cartoon break.

鈥淎fter a couple of months of working with me, when I would show up at the door, he would cry and run away,鈥� says Trott. 鈥淗e made no progress.鈥� 

In hindsight, what she thinks the family really needed was respite care. 鈥淎t the end, I felt more like I was there supporting the mom,鈥�  she recalls. 鈥淚 would stay and she would tell me things. She was sad and frustrated.鈥�        

That experience was a catalyst. In search of solutions, Trott went on to earn a master’s degree in special education and then two degrees in occupational therapy. When she was training, she shadowed a veteran OT, as the specialists are typically referred to in schools. 

They drove to several small gyms, where the experienced OT stood alongside kids doing simple gymnastics, talking to them about what they were doing. 

鈥淔or the first time, I saw nonverbal kids having fun,鈥� says Trott. 鈥淎nd I felt something about what I was seeing.鈥� 

All people regulate their emotions or nervous systems by what鈥檚 known as 鈥渟timming鈥� 鈥� making repetitive motions or noises. In contrast to things neurotypical people do unconsciously, like twisting a strand of hair, autistic peoples鈥� stims can be dramatic, such as pacing or rocking. Schools and therapists often attempt to stop stims.  

Occupational therapy鈥檚 descriptions of this are much closer to Piril盲鈥檚 ideas about the nervous system than to ABA鈥檚 concepts. Proprioceptive input 鈥� what OT refers to as 鈥渉eavy work,鈥� like jumping or other activities that engage muscles 鈥�  calms nerves and enables self-regulation. Vestibular input 鈥� sensory information the brain receives from the inner ear when a person swings or spins, among other motions 鈥� facilitates balance and movement.

If schools taught children about their nervous systems, lots of students鈥� needs would be met, not just the autistic kids鈥�, Trott believes: 鈥淚f we had a special ed teacher for every grade level and we had an OT for every campus, schools could look very different.鈥�

A 74 analysis of Medicaid billing claims revealed that spending on ABA just for children with this public, safety net healthcare now totals $2 billion a year. If that money were added to schools鈥� annual budgets, every district in the country could add one full time and one half-time occupational therapist. 

Neurodiversity training goes only so far

One of the first things Boulder Valley leaders did with the input from its Autism Advisory Team was to put together mandatory neurodiversity training for every staff member in the district. 

In a departure from typical practice, a training video was created using input from community members, says Michelle Brenner, director of special education for the district. Two of the four presenters in the video are autistic. Trainers emphasize that understanding what it means to be neurodiversity-affirming is good for everyone. 

The with a discussion of fight-or-flight and other autistic behaviors, which appear when a student feels physically unsafe or 鈥� something that is much harder for a neurotypical person to anticipate 鈥� socially unsafe.

鈥淲hen a student engages in those behaviors, often they are trying to tell us, 鈥業 feel unsafe all the time,鈥� 鈥� explains a speech-language pathologist. 鈥淭hat is the autistic experience.鈥� 

Then, an autistic high school teacher, Wren Roberts, describes what it is like to go through life in a state of hyperarousal. Indeed, she confesses that she feels unsafe talking on camera. 

鈥淚 have spent my entire life learning to hide it,鈥� she explains. 鈥淭hat鈥檚 called masking.鈥� 

Just as existing with a continually activated nervous system causes mental health issues, she notes that autistic people who mask experience high rates of depression, anxiety, insomnia and suicidal ideation.  

Up next in the video, an autistic man who volunteers in a district afterschool program outlines how a neurotypical person can figure out whether a student is feeling unsafe, and why. Finally, a high school teacher reminds the audience that while this cycle is often pronounced for autists, 鈥淥ther students are likely feeling the same way.鈥� 

As progressive as this seems compared with most other districts鈥� approaches, the mandatory training was relatively simple, says Shannon Gamble, Boulder Valley鈥檚 director of multi-tiered systems of support. Her specialty is differing strategies that are used to help students struggling with literacy or other skills.  

District leaders have created an internal data dashboard tracking how often students are restrained, how many are restrained repeatedly, whether teachers and therapists have looked for the 鈥渞oot causes鈥� of repeated problems and other indications that changes are being implemented and whether they are working. 

The training is a start, Gamble says. 鈥淎 big part of what needs to shift is mindset and understanding, and the way that we view each other and our students.鈥� 

Some families want their children to continue to receive ABA in school. But to others, who continue to push against it, the pace of change can feel glacial, they say.

鈥淥ur families come in and they’re like, ‘All right, why don’t you just go tell people to do this thing?’ ” says Gamble. “There’s things we can do right away. We can change [the language on] a form, right?鈥�  

Altering mindsets is a longer-term proposition, she continues: 鈥淚t’s going to take more than us just telling people what to do 鈥� especially things like neurodiversity, where many of our educators were taught in a way that maybe is not what our neurodiversity philosophy is telling them we believe.鈥�

Because district leaders had invested in what they thought was the best intervention for students, a number of the people leading its special education efforts hold some of ABA鈥檚 highest credentials. The persistence of their beliefs is visible in district materials.  

For example, families point to an educator training created more than a year after adoption of the neurodiversity policy that makes numerous rewards-and-consequences recommendations even as it acknowledges trauma鈥檚 role in children鈥檚 behavior. Forms distributed to classroom aides have grids for charting ABA interventions.    

A outlining the neurodiversity policy and resources also links to that outlines Boulder Valley’s ABA strategies: 鈥淭he behavior analyst is responsible for the implementation of skill acquisition and behavior support strategies aligned with current best practices from the field of applied behavior analysis (ABA) as well as responsibilities and duties within the school special education collaborative team.鈥�

Restraint and seclusion

In 2022, the U.S. Department of Education to avoid restraining and isolating students with disabilities unless a child鈥檚 behavior poses 鈥渋mminent danger of serious physical harm to themselves or others.鈥� Not only are the practices dangerous and abusive, it said, but there is no evidence they help modify disability-related behaviors. 

They are also discriminatory, the agency warned. Students with disabilities are three times more likely to be physically restrained or confined than their non-disabled classmates. Often, they face discipline because they lack proper services. 

In practice, however, it is devilishly difficult to get schools to move away from restraint and seclusion. Over the last couple of years, in several states that of even just preschoolers and early elementary age children, education administrators have lobbied statehouses to repeal the bans.  

Disability advocates push back, saying schools need to do more to support educators who are left without effective alternatives. As a result, when seclusion is prohibited, schools often simply rebrand the spaces where children are confined as time-out rooms. 

How does Boulder Valley stack up? 

Brenner and Gamble say the district鈥檚 internal data shows small improvements since the adoption of the neurodiversity policy, including a 鈥渟light reduction鈥� in the number of autistic students who are repeatedly restrained and secluded and a dramatic drop in the number subjected to formal threat evaluations under Colorado鈥檚 school safety protocol.

But in terms of collecting data on restraint, Colorado鈥檚 history is tangled. The state鈥檚 first restrictions on when a child could be physically controlled were intended to address solitary confinement and punishment in juvenile detention centers. 

The practices were supposed to be rare in schools, but the state didn鈥檛 collect any data that would allow it to measure compliance. In 2022, the Colorado General Assembly passed a law requiring districts to begin reporting by the end of the 2024 school year. 

It did not, however, address seclusion as a specific form of restraint 鈥� which all but a handful of districts interpreted as a mandate to report only episodes when a child was physically or mechanically controlled. Legislators rejected a 2025 attempt to clarify the law.

For the 2024-25 academic year, Boulder Valley told the state it physically restrained just 42 students. It did, however, of 鈥渄etrimental behavior鈥� 鈥� conduct that has a negative impact on the welfare or safety of other students or staff 鈥斕齛mong children with disabilities. Students with IEPs make up 15% of the district鈥檚 student body, but comprise one-third of those disciplined.听

While ABA practitioners鈥� stances vary, they often don鈥檛 think they are restraining a child but rather 鈥� much as took place in Piril盲鈥檚 basement 鈥� believe they are engaging in a therapeutic strategy that is to the child鈥檚 benefit.   

In 2010, the Association for Behavior Analysis International opposing 鈥渋nappropriate鈥� restraint and seclusion but supporting the interventions when used by practitioners as part of a formal plan: 鈥淲hen used in the context of a behavior intervention plan, restraint in some cases serves both a protective and a therapeutic function. These procedures can reduce risks of injury and can facilitate learning opportunities that support appropriate behavior.鈥�

In May 2025, 社区黑料 reported that the Arizona Autism Charter Schools 鈥� a network of ABA schools whose founder was chosen by President Donald Trump to oversee special education 鈥� restrained and secluded students at unusually high rates even though state law restricted the practice to emergencies.    

Often, when autistic children are sent to 鈥渂lue zones鈥� or 鈥渃ool-down corners,鈥� schools fail to see and report it as seclusion. The distinction that鈥檚 lost: a space students can retreat to of their own volition when overwhelmed 鈥� and leave when calmer 鈥� is different from seclusion.

The fact that the district has adopted a neurodiversity policy but also proclaims ABA will remain in place infuriates Piril盲. If you ask her, there鈥檚 no reason state and local officials can鈥檛 do their own version of her analysis of which strategies contributed to P鈥檚 dysregulation and which enabled him to stay calm and engaged. They鈥檙e just choosing not to.  

‘The most important message’

One of the first things Jenny Thamer did as co-chair of the Autism Advisory Team 鈥� a role she played for two years before moving on 鈥� was to send out a second survey, consisting of a single, open-ended question: 鈥淧lease tell us the most important message(s) you or your child want educators to know.鈥�

The replies were consistent: 

鈥淚t is our job as adults to figure out why [kids] are not doing well. Children should never be left to figure it out on their own.鈥�

鈥淢y child does not need to make eye contact to be listening. He is not avoiding instruction by not making eye contact.鈥�

鈥淢y child may look fine on the outside to you, but inside they are almost paralyzed with anxiety.鈥� 

鈥淢y child may communicate differently, but that doesn鈥檛 mean he doesn鈥檛 want to be involved.鈥�

Anderson, the superintendent, says he鈥檚 committed to fully implementing the district’s neurodiversity policy. True recognition of the array of ways in which people experience Boulder Valley鈥檚 schools will benefit every student and educator, he says, autistic or not.   

鈥淭he idea that we understand the challenge and the needs of a neurodiverse community, and that we are locking arms to meet those needs, that鈥檚 good for all kids,鈥� he says.    

鈥淭his is really hard work. I鈥檓 not here to tell you we鈥檝e solved the problems. But these things aren鈥檛 hidden anymore. They鈥檙e not whispered.鈥�

After publication, the district provided data showing 42 students were physically restrained during the 2024-25 school year.

This investigation was produced with support from the Education Writers Association Reporting Fellowship program.

In February, on orders from the U.S. Department of Government Efficiency, Medicaid officials created a first-of-its-kind online portal containing hundreds of millions of billing records that supposedly would allow everyday people to crowdsource investigations into healthcare fraud.

“DOGE is not a department,鈥� Elon Musk . 鈥淚t’s a state of mind.”

At the time, thousands of heavily armed federal agents were smashing into cars and battering their way into homes throughout Minnesota鈥檚 Twin Cities, under the guise of investigating what the Trump administration insisted was unchecked fraud in autism therapy committed by Somali immigrants.

There was a grain of truth: Fraud is indeed widespread in autism therapy, something a series of federal audits begun during the Biden administration found in red states and blue. In the wake of the audits鈥� release, the Trump administration raided autism centers, blaming lawless immigrants, welfare cheats and 鈥渨oke ideology鈥� for the scandals unfolding nationwide. 

But a 74 investigation found another problem entirely: a massive influx of private equity players capitalizing on the autism therapy industry to the tune of $7 billion in taxpayer-funded Medicaid payments over the course of six years. And much of this explosive growth has come at the expense of children.

The explosive growth of applied behavior analysis

社区黑料 downloaded the 275 million-record DOGE dataset and analyzed Medicaid claims for autism therapy from 2019 to 2024. Our analysis reveals how an unproven, even harmful, behavior modification system called applied behavior analysis, or ABA, is crowding out more effective 鈥� and humane 鈥� treatments for children with autism.

And it shows how a well-intentioned campaign by parents desperate to find a “cure” for their autistic kids has mushroomed into a poorly implemented but extremely lucrative mechanism for providing ABA 鈥� a system of rewards and punishments designed to eliminate certain behaviors 鈥� to as many autistic children as possible, regardless of their age or actual needs. 

Pediatricians, psychologists and other professionals who diagnose autism reflexively prescribe ABA to parents, typically unaware that there is mounting disagreement about the therapy鈥檚 effectiveness and the associated trauma that can follow an autistic individual into adulthood. Told this is the child鈥檚 best chance at a decent life, few caregivers question the guidance until harmful effects start to show.

Experts consulted by 社区黑料 weren鈥檛 surprised by our findings. Health officials turned on the fiscal taps before instituting meaningful legal oversight 鈥� creating the exact kind of loosely regulated environment that draws the opaque investment strategy employed by private equity. 

A secretive corner of the financial sector not held to the same standards as exchange-traded stocks, bank loans and other publicly monitored investments, private equity has acquired businesses in numerous industries over the last decade, hoovering up billions of dollars. 

Private equity typically acquires privately held companies that have access to steady streams of revenue, extracting as much cash as possible in the short term and leaving debt when investors move on. To maximize profits, they often deliver the easiest, most lucrative services, rather than the personalized treatments Medicaid and other public funds were supposed to pay for.

From 2019 to 2024, 社区黑料 found, Medicaid claims for the six most common autism therapy billing codes shot up some 381%, from $400 million a year to nearly $2 billion 鈥� with private equity-backed providers leading the billing pack.

Indeed, federal begun in 2022 鈥� two of them in blue states and two in red 鈥� reveal a very purple problem. They detail how bad actors in the for-profit business sector, whether greedy or merely inept, push autistic children toward ABA therapy at the expense of other, more effective supports at school that students with disabilities are guaranteed by law. 

Families whose children are referred to ABA by pediatricians and other providers are typically urged by private therapy centers to sign them up for as many hours as possible 鈥� up to 40 hours a week 鈥� and to keep them there for years. That is a prescription ripe for exploitation, says Ari Ne鈥橢man, an assistant professor of health policy and management at Harvard’s T.H. Chan School of Public Health and former director of the Autistic Self-Advocacy Network.  

鈥淧rivate equity was attracted to ABA because the industry as a whole had set up a very tidy financial arrangement for itself,鈥� says Ne鈥橢man. 鈥淚t鈥檚 not that private equity is corrupting a previously fine field. Private equity entered the field because of the flaws that were already there.鈥� 

For fiscal year 2026, federal spending on special education . If the $2 billion now being spent every year on ABA for children with publicly subsidized health insurance were added to schools鈥� annual budgets, every district in the country could add one full-time and one half-time occupational therapist 鈥� specialists in desperate short supply who have proven success in addressing many issues facing autistic children.

DOGE鈥檚 intentions notwithstanding, many in the autism community have hoped the crisis posed by runaway Medicaid spending might present an opportunity to take a hard look at how ABA has grown into an industry with the fiscal might to stave off even basic state and federal oversight. And how it is crowding out more effective, humane alternatives, and even preventing children from going to school.

Instead, now they fear that politics will further overshadow needed autism therapy reforms. The second Trump administration has withheld some $3 billion in Medicaid funding from California and Minnesota, insisting that their governors 鈥� whom the president views as foes 鈥� are not attending to fraud. As a consequence, people with disabilities have already lost services. 

As the Medicaid cuts in Trump鈥檚 One Big Beautiful Bill go into effect, and as he and Health and Human Services Secretary Robert F. Kennedy Jr. continue to promote disproven and dangerous 鈥�cures鈥� for autism 鈥� at the cost of research into better treatments 鈥� disability advocates fear the future will look a lot like a dark past.   

ABA claims vastly outpace spending on autistic people鈥檚 quality of life

In addition to the financial boondoggles, there鈥檚 a human cost. 

During the six years of records we analyzed, Medicaid billing for ABA therapy totaled nearly $7 billion. That鈥檚 $1 billion more than the United States has spent in 20 years on research and programs under the Autism CARES Act, which pays for services to better autistic people鈥檚 lives.   

As disproportionately small as the CARES Act funding is, even after two decades of lobbying by autists and advocates, very little of it is spent on . Of the $2 billion appropriated last year, to be spent over five years, $30 million will go to creating support for caregivers, $13 million to job training and $19 million to safety and well-being.    

Now, even that modest pot of funding is imperiled, as Kennedy is redirecting federal resources toward new research on vaccines and other long-discredited 鈥渃auses鈥� of autism and dangerous, ineffective treatment strategies. 

Meanwhile, is that the most widely used therapy, ABA, is frequently ineffective and . The therapy was pioneered in the 1960s by Norwegian-born UCLA researcher Ole Ivar Lovaas, who used the same regime of rewards and punishments to develop LGBTQ conversion therapy 鈥� now widely acknowledged as abusive.

Independent researchers and autistic adults who went through ABA say its focus on 鈥渆xtinguishing鈥� natural and frequently beneficial autistic traits and in their place demanding compliance with 鈥渘ormal鈥� behaviors is traumatizing. Much as conversion therapy can鈥檛 change a person鈥檚 identity but can instead instill shame, behavior conditioning will not make autists nondisabled and sends the message their strengths are unimportant.

Lovaas is one of two early autism researchers whose histories are now known to include ties to Nazi Germany. In interviews, Lovaas said that during the five-year German occupation of Norway, he and his family were forced to labor on farms. But a 2025 report in the journal History of the Human Sciences documents his role as a local of Norway鈥檚 Nazi youth movement. The Third Reich sought to 鈥�euthanize鈥� autistic people, who were seen as a financial and genetic burden to society.  

The other autism researcher who played a role in the Nazis’ eugenics campaigns was Dr. Hans Asperger, who reported of 鈥渕alformed children鈥� to be targeted for sterilization or death. 

Proponents are quick to assert that today鈥檚 ABA is a far cry from the slaps and electric shocks of what was known as the Lovaas Method early on. Yet the goal 鈥� to 鈥渆xtinguish鈥� autistic traits in children鈥� typically remains. Kids as young as 2 are routinely subjected to as many as 40 hours a week of repetitive behavior modification drills.   

A past 74 investigation found that for years, the evidence used to legitimize ABA was produced by the industry itself, was rife with undisclosed conflicts of interest and neglected basic guardrails such as documentation of harmful 鈥渁dverse events.鈥� By contrast, independent research into ABA by the and academic scholars found little to no evidence of effectiveness.

A of 460 autistic adults and caregivers of autistic children found that nearly half of those who went through ABA showed symptoms of post-traumatic stress, while 72% of those who did not participate in the therapy were asymptomatic.   

, researchers at the University of Wisconsin-Madison, Ohio State University and the University of Texas at Austin found that people who had participated in ABA before age 18 were 30% more likely to experience a mental health hospitalization than autistic people who had not. Autistic people who had been treated with ABA and hospitalized were also admitted with 32% greater frequency than those who had not.   

Again, says Ne鈥橢man, the industry is predicated on a flawed, but very profitable, model. ABA industry recommendations call for every child, regardless of how young they are or what their needs are, to receive the same intensity of treatment.     

鈥淚 would argue that ABA is potentially harmful in any situation because we haven鈥檛 really addressed the ethical concerns of the potential mental health consequences,鈥� says Ne鈥橢man. 鈥淏ut even if we were to set that aside, the idea that there is an evidence base for applying ABA in all instances without regard to any consideration for age or the types of challenges that someone has, it鈥檚 just ludicrous.鈥�

鈥淔orty hours a week of therapy is a full-time job for a 3-year-old,鈥� says Ne鈥橢man. 鈥淚t鈥檚 harmful for kids and families first and foremost, but I also think it鈥檚 a poor use of public funds.鈥� 

When therapy supplants school

The four federal audits of state Medicaid spending show what advocates have long decried: ABA service providers are allowed to keep children in lucrative standalone treatment centers where they are barred by Medicaid law from receiving academic instruction 鈥� often for years after they should begin attending school.

Auditors raised similar concerns in Indiana, flagging the case of a child who was referred to ABA in January 2014 at the age of 2 and was still receiving more than seven hours of therapy a day, five days a week, at age 8 鈥� years after they should have been in school. Medicaid payments for this child increased from $52,000 a year in 2017 to more than $185,000 in 2022, when the child was 11, for a total of $677,448. 

(For perspective, state spending on school-based special education services varies wildly and is poorly reported. One often-used estimate is that an average of $26,000 is spent annually on each student with a disability, versus $9,000 per non-disabled pupil.)     

Special education teachers say that when these students show up in a classroom, it鈥檚 after years of lost academic instruction. In practice, often this means they will be denied the chance to learn alongside their typically developing peers 鈥� a right enshrined in federal law. 

Advocates say the exact number of children in this position is probably unknowable. As a youngster approaches kindergarten age, families are often warned by their ABA provider that taking their child out of private therapy and enrolling them in school will cause regression. Much as homeschoolers often do, these families can sign official documents saying they are taking responsibility for their child鈥檚 education.    

In the case of the Indiana youngster, now 11, auditors noted that the treatment plan did not say whether the child attended school, 鈥渂ut had a standardized statement: 鈥楾he patient鈥檚 family [has] taken on responsibility for meeting the educational needs of this patient.鈥� 鈥� 

After the audit, Indiana lawmakers on how much therapy centers could bill per child, and for how much time. Many children have reached or are near reaching the cap.  

A state task force appointed to address issues likely to follow the changes repeatedly heard from parents and advocates concerned about older children who, no longer eligible for Medicaid-funded ABA, would attend school for the first time. As a result, a new law allows private ABA therapists to accompany children to class for a transition period. 

How did the ABA industry get so big?

For the first 20 years after Lovaas announced he had 鈥渞ecovered鈥� 鈥� his term for cured 鈥� nine of 19 autistic children on whom he had developed ABA, the supposed miracle cure was inaccessible to almost all families. Insurers were not required to cover the diagnosis or treatment of autism.

Then, in 2005, the mother of a 4-year-old autistic boy sat down at her kitchen table and drafted a bill to require health insurers in South Carolina to cover the 鈥済old standard鈥� therapy being touted as a child鈥檚 best shot at a 鈥渘ormal鈥� life. Then she enlisted hundreds of parents of autistic children to lobby state lawmakers to pass it. 

was compelling. To afford ABA, then costing $70,000 a year, she and her husband had downsized their house and spent their home equity 鈥� plus her entire salary as a law professor 鈥� on therapy for their son, Ryan. 

The grassroots push paid off. In 2007, despite ferocious insurance industry opposition, the South Carolina legislature approved the bill 鈥� only to have the governor veto it, with just one day left in the session. 

Unumb put out another call. Accompanied by a CNN camera crew, an army of parents flooded the statehouse, demanding a veto override. 

When the vote was cast, Unumb , the lawmakers on the floor turned toward the families in the gallery and gave them a standing ovation.    

Weeks later, Unumb held a summit to teach other parents, who flew in from around the country, how she had succeeded in getting what鈥檚 known as Ryan鈥檚 Law passed. She spent the next decade working with Autism Speaks, helping to organize families in other states.

The parents had potent lobbying partners. To convince insurers that ABA was not experimental, a growing community of practitioners created an organization, the Behavior Analyst Certification Board, that set standards, bestowed credentials and promoted research. 

The board did not respond to a request for comment.  

Few questioned whether there was an inherent conflict of interest in an industry creating its own proof points. Most people were more focused on the plight of families 鈥� and the promise heralded by a miraculous, if frightfully expensive, cure. By 2019, every state required most private insurers to pay for autism services, though with wildly differing benefit levels. 

The bigger turning point occurred in 2014, when the Obama administration clarified that the Affordable Care Act required publicly subsidized care plans, including Medicaid, to pay for autism treatment. 

At the same time, the rate at which children were identified as autistic began rising dramatically. The ACA for the first time required insurers to pay for autism assessments, and improvements to diagnostic criteria helped to identify autistic children whose traits were previously missed. 

An analysis of special education Child Count data shows that between 2011 and 2022, autism鈥檚 prevalence rose from 2.3 to 6.3 per 1,000 children, with the greatest increases among those aged 5 to 8 years.

Today, Unumb is the CEO of the Council of Autism Service Providers. The organization, she wrote in an email to 社区黑料, 鈥渂elieves ABA providers must continuously earn the public鈥檚 trust in caring for children with autism. Genuine fraud, waste and abuse must be called out and punished to uphold accountability and patient safety.鈥�

鈥淏ad actors exist in every healthcare profession, including ABA, but that doesn鈥檛 mean they are prevalent,鈥� she added. 鈥淭housands of qualified, ethical ABA providers are at work every day, doing the right thing and making a difference in children鈥檚 lives.鈥�

Private equity enters the picture 

Private equity funds are groups of investors who pool their money to buy ownership stakes in privately held companies or real estate. These firms and their deals are subject to far less government oversight than public companies that trade on the stock market. They rarely disclose information about their activity. 

They typically have managers, who make decisions about the businesses they acquire but don鈥檛 put much of their own money into the investments. Frequently, the goal is to simultaneously cut costs and increase revenue to create a cash flow for the investors. The businesses are usually resold within three to five years. 

Over the last two decades, private equity has become increasingly common in healthcare, even though the acquisition of doctor鈥檚 practices, hospitals, medical equipment manufacturers and nursing homes can . In terms of public oversight, though, all those industries are tightly regulated compared to ABA. 

The mandates for insurance coverage of autism were instituted with very little initial oversight of the quality of services being provided. States that did require providers to be licensed often simply decided to recognize the ABA industry鈥檚 internal credentials.

While these standards are often stricter than a provider鈥檚 hiring requirements, the practice of adopting industry credentials leaves behavior analysts in charge of overseeing their own members. When, in the wake of a scathing federal audit of its Medicaid billing practices, Colorado recently moved to license therapists, it rejected a suggestion that a newly created oversight board contain outside professionals such as psychologists. Instead, the board will be composed of four therapists and one public member, who can also have industry ties. 

The combination of lax standards and ready cash proved irresistible to private equity firms, which began buying ABA practices and consolidating them into large, multi-state chains. From 2015 to 2024, private equity firms acquired 574 sites run by 147 providers, according to researchers from the Brown University School of Public Health.

Of the 50 largest providers by Medicaid billing in 社区黑料鈥檚 dataset, 23 are (or, in two cases, were) owned by private equity. From 2019 to 2024, their claims totaled $2 billion. 

Private equity firms own 11 of the top 15, with claims totaling more than $1.5 billion between 2019 and 2024. 

The process has dramatically reshaped an industry already in need of reform 鈥� in the wrong direction. 

鈥淭hey have created massive national chains with the primary purpose of extracting high returns in a short period of time,鈥� write the authors of 鈥�,鈥� a report from the Center for Economic and Policy Research. 鈥淐onsolidation gives private equity-owned provider organizations a large competitive advantage over other for-profit and nonprofit providers, as well those offering other approaches to [autism] services.鈥�

鈥淚t also gives them more bargaining power to negotiate higher rates for themselves vis-脿-vis state agencies, regulators and insurance payers. Some PE firms have used this leverage to extract higher reimbursements under threat of closing down sites in states in which they do not get the rates they prefer.鈥�

Many of the large networks also advertise immediate openings for autism assessments, which they tout as a quick path to enrolling in therapy. Otherwise, according to the National Institutes for Health, the median time a family spends on a wait list for an independent evaluation is a year and a half. 

How private equity works

Some private equity funds take a partial ownership stake in a business that needs cash to expand or improve. But most of those investing in autism therapy are typically buyout funds, which acquire and consolidate existing businesses.

These funds’ managers invest very little of their own money, maybe 1% or 2% of the total. Investors, which often include pension funds and other institutions, put in another 30% to 50%. The rest of the cost of the acquisition is borrowed 鈥� what鈥檚 referred to as a leveraged buyout.

To make these transactions, a fund sets up a series of companies. Responsibility for the debt is transferred to the company being acquired. 

As the purchased company struggles to make the loan payments, a share of the cash coming in is returned to the investors. Sometimes, the fund managers take out loans on the already indebted business and give the cash to their investors as a dividend.   

Meanwhile, the leaders of the investment fund 鈥� whose expertise is typically in maximizing profits 鈥� are allowed to make decisions about staffing, levels of patient care, who they will serve and where. 

ABA is supposed to be highly individualized, with therapists continually collecting data on children鈥檚 responses to repeated efforts to get them to stop behaviors deemed undesirable, such as hand-flapping or rocking, or to perform actions the therapist wants, like making eye contact. 

This information, gathered by the lowest-rung member of the ABA team, a behavior technician, is supposed to be reviewed by a credentialed provider known as a board-certified behavior analyst, who uses it to modify the child鈥檚 treatment plan on a regular basis.       

But in state audits, federal investigators found repeated instances where the therapists鈥� notes submitted as claims documentation had been copied and pasted, often day after day, bearing the names of numerous different children working with different therapists.

Notes were often signed off by therapists before they had finished the session in question, and Medicaid was frequently billed for unallowable activities, such as naps and lunch.   

For their 2023 report on private equity鈥檚 influence on ABA, investigators at the Center for Economic and Policy Research interviewed former employees of one of the oldest therapy center networks, the Centers for Autism and Related Disorders, or CARD. Founded by one of Lovaas鈥� graduate students, the chain was sold to the private equity group Blackstone in 2018 for a reported $700 million.  

The former employees said that under Blackstone鈥檚 management, they were told to prioritize younger children. Not only can smaller kids remain enrolled for several years before reaching school age, they are most likely to be referred for additional hours of therapy per week under the guise of early intervention. 

鈥淭hey would literally terminate patients in our programs who required lower hours and replace them with those requiring at least 30 to 40,鈥� the researchers quoted one former employee as saying.

CARD did not respond to requests for comment. In a statement to 社区黑料, Blackstone said the network of centers was hit by a 鈥減erfect storm鈥� of COVID-19-era lockdowns, labor shortages and low insurance reimbursement rates that led to a Chapter 11 restructuring. 

鈥淲hen it became clear that a restructuring was necessary to put the company on the best long-term path to deliver on its mission, we worked day and night 鈥� to keep its existing facilities open so the company could continue serving patients,鈥� the statement says.

The statement adds that Blackstone was never involved in specific clinical treatment decisions and had sought to increase pay, reduce caseloads and improve training and operations. 

If an individual center or an entire network is accused of fraud or found to have abused patients, the investment managers who made decisions to maximize profit can鈥檛 be held accountable. Just like the debt, liability accrues to the 鈥減ortfolio company鈥� that owns the actual centers.  

By 2022, CARD had in states with lower Medicaid reimbursement rates and made that put others out of business, shrinking from 250 centers to 100. In June 2023, it filed for bankruptcy and was bought by a group of private investors recruited by its founder.

According to 社区黑料鈥檚 dataset, in 2019, CARD billed Medicaid more than $13 million. In 2024, its Medicaid receipts were slightly less than $2 million.

Private equity鈥檚 structure shields investors and ABA network owners from liability

With corporate headquarters in Farmington, Michigan, Centria Healthcare was founded in 2009 as a pediatric nursing provider. When one of its early patients needed ABA, the company created an autism-focused division. Today, it owns centers in 11 states. 

Because the company is privately owned, its finances are largely shrouded in secrecy. But, according to the investor intelligence service Pitchbook and data gathered for the Center for Economic and Policy Research, Centria was purchased in 2016 by Martis Capital, a private equity firm specializing in acquiring North American healthcare providers. Over the next three years, Centria expanded to nine states. 

As part of a 2018 , the Detroit Free Press reported that Michigan鈥檚 attorney general was looking into claims that Centria had engaged in improper billing and service provision. The story was based on interviews with former company executives, documents obtained by reporters and allegations detailed in a defamation lawsuit the company filed against some of the past employees. 

The paper also reported that two Michigan counties had after local mental health officials cited the company for billing and care issues and an employee was abusing a child. 

Martis Capital did not respond to a request for comment.  

In a statement to the newspaper, Centria CEO Scott Barry vigorously denied the claims: “Whatever these allegations are, yes, they’re very outrageous, but they’re not true. And we’re trying to do a good job to help kids and help families and help our community.”

At the time, the company was in line for an $8 million job-creation grant secured with the backing of the state鈥檚 lieutenant governor, described by the Free Press as a longtime advocate of autism therapy. Five weeks after then-Lt. Gov. Brian Calley made the recommendation, a key company investor hosted a party kicking off Calley鈥檚 gubernatorial bid. Guests donated more than $100,000 to his campaign, the paper reported.      

The grant was put on hold while the state investigation unfolded. In March 2019, the state closed the probe, saying that while it had noted potential billing irregularities, there wasn鈥檛 enough evidence to merit criminal complaints. The grant was not reissued. 

Three former executives later sued Centria, resurfacing their allegations. Both lawsuits were eventually dismissed by the parties.

In a statement to 社区黑料, Centria CEO David Harbour said the company focuses on quality and access.

鈥淥ur work is grounded in a commitment to ethical care, clinical quality and supporting children with complex needs 鈥� including families who may have struggled to find services elsewhere,鈥� Harbour wrote. 鈥淲e strive to identify the needs of children, families and the broader healthcare system as it continues to evolve 鈥� delivering ethical, individualized care that supports the unique needs of each child and family we serve.”

But Centria doesn鈥檛 have to report whether the scandals had any impact on its bottom line. 

鈥淸Private equity firms] have nothing to lose if something goes bankrupt,鈥� says Rosemary Batt, one of the authors of the Center for Economic and Policy Research report and a professor emeritus at the Industrial and Labor Relations School at Cornell University. 鈥淚f a company gets caught in fraud, it鈥檚 just the cost of doing business.鈥�

In 2019, Centria was sold to a different private equity fund, Thomas H. Lee Partners, for $415 million. Since then, according to 社区黑料鈥檚 analysis, the company has been the country鈥檚 largest Medicaid biller, bringing in more than $440 million during our six-year window. That鈥檚 more than twice as much as the second-largest ABA company by Medicaid revenue, Lighthouse.

Thomas H. Lee did not respond to a request for comment. 

Ryan Leitner, a researcher at the Private Equity Stakeholder Project and the author of a on the ABA industry, worries that states鈥� efforts to crack down on Medicaid abuses won鈥檛 address the underlying cycle that allows investment funds to pass off a business that they鈥檝e saddled with problems.      

鈥淎 great place to start is the concept of joint liability between these [investment] firms and the company that they own and operate,鈥� says Leitner. 鈥淵ou need to have assurances that the care is going to meet some kind of benchmark, that there’s going to be some kind of joint liability if there is a problem.鈥�   

Some states, he adds, are trying to give their attorney general or another regulator the ability to stop the sale of a healthcare facility if they determine the company won鈥檛 run it properly or if a private equity firm has problems elsewhere. 

Private equity providers gravitate toward high-reimbursement states 

Writing in the January 2026 issue of the American Medical Association journal JAMA Pediatrics, a group of researchers , one showing the prevalence of children with autism diagnoses and the other assigning states 鈥済enerosity scores鈥� assessing their insurance rules regarding autism. 

Using a commercial deal tracker, they identified 574 autism service delivery sites acquired by private equity between 2015 and 2024, which they overlaid on the maps. The upshot: The states with the highest rates of diagnosis and the most generous benefits have the largest concentration of private equity-owned ABA centers. 

Home to some of the first acquisitions, Colorado, with 6 million residents, had 38 private equity-owned centers, the third-largest concentration in the country and a likely undercount, the researchers noted. Only California, home to more than 39 million people, and Texas, which has 32 million residents, had more private equity-owned ABA centers 鈥� 97 and 81, respectively. 

In February, the Department of Health and Human Services’ Office of the Inspector General released the fourth of eight state audits, finding that Colorado鈥檚 Medicaid spending on ABA mushroomed from $60 million in 2019 to $163.5 million in 2023. 

The auditors examined claims made in 2022 and 2023, finding at least $78 million in improper payments, plus an estimated $207 million in 鈥減otentially inappropriate鈥� claims. 

In Wisconsin, they found $18 million in improper payments in 2021 and 2022, plus $94 million more in potentially inappropriate payments. In Maine in 2023, $45 million in claims were improper and $22 million potentially so. In Indiana, a total of $56 million were improper in 2019 and 2020, with another $76 million potentially improper.

In Colorado, the investigators examined monthly billing records for 100 children, finding improper and potentially improper claims in every case. Seven facilities could not supply individual patients鈥� diagnoses or referrals.

Two providers 鈥� including one that auditors said 鈥渨as purchased by a nationwide ABA company that subsequently closed all of its ABA facilities in Colorado鈥� 鈥� did not respond to requests for records from state and local investigators. 

In the 96 months auditors examined, providers didn鈥檛 describe the services in some claims; four providers didn鈥檛 submit any treatment notes at all. One facility routinely said a child had engaged with peers even though the therapy was delivered at home with no other children present.          

Numerous bills described unallowed 鈥渃ustodial care,鈥� such as bathing, dressing and eating. In 67 months, facilities billed for one-to-one therapy but described group activities. 

ABA companies in Colorado

In May, the Colorado General Assembly took up legislation aimed at . At an , state officials testified that they believed there were between 410 and 500 clinics but could not say with precision because, unlike day cares, summer camps and similar facilities, autism therapy centers are not required to register with the state.  

In 2025 alone, officials received 35 reports of endangerment, including physical abuse by staff, medication mistakes, inappropriate restraint and a registered sex offender working at one center. But because ABA providers and facilities are unregulated, the state lacked jurisdiction to investigate. 

It might be the tip of the iceberg, the state officials warned lawmakers, because many participants can鈥檛 tell their families when something is wrong. At least a third of Colorado children in ABA are nonverbal, and more than 18% are age 3 or younger. 

The bill would create a behavior analyst licensing board and require the state Department of Human Services to craft standards for clinics. The board would consist of three credentialed behavior analysts, one assistant 鈥� or technician 鈥� and one member of the public. It would grant licenses to people who have been given credentials by organizations created by the ABA therapists associations.

To proponents of ABA, many of whom have nursed concerns that private equity is sullying the public profile of their industry, the bill was a huge win. But to many in the disability community, it was one more step in the wrong direction. They feared that new standards would enshrine a treatment they oppose, crowding out public support for alternatives that may be more effective and humane.       

Two parents submitted imploring legislators to oppose or amend the bill. Both cited ABA’s eugenicist roots and research on its harms.  

鈥淎utistic adults often compare ABA to gay conversion therapy, because the goal is often to make autistics appear less autistic, rather than helping them live safely and comfortably as themselves,鈥� wrote Boulder parent Jenny Thamer. 鈥淚n fact, both practices were developed by the same founder.鈥�

Among other changes, she asked lawmakers to appoint a licensed mental health professional and an autistic adult 鈥渨ho provides lived experience鈥� in place of two of the three analysts on the board; to require discipline for practitioners who engage in harmful punishments, including physical restraint and seclusion 鈥� mostly outlawed in Colorado schools 鈥� and to remove references in the bill to ABA as 鈥渂ased on scientific research.鈥�

鈥淭his bill will have lasting consequences for autistics for decades,鈥� Thamer concluded. 鈥淚 respectfully urge you not to expand this system without strong protections, independent oversight and meaningful representation from the autistic people most often harmed by these practices.鈥�

On June 2, Gov. Jared Polis signed the bill without her recommended changes. 

Graphic design by Eamonn Fitzmaurice

This investigation was produced with support from the Education Writers Association Reporting Fellowship program.

Imagine knowing exactly what you want to say, but the words don鈥檛 make it from your brain to your lips. You know how you want to move, but your body fails to comply. You鈥檙e thirsty, but your hand refuses to reach for your cup. You see the traffic but can鈥檛 stop your feet. 

It鈥檚 what I refer to as a brain-body disconnect. My brain knows what I want to do, say or stop doing, but my body doesn鈥檛 usually comply.

This is the reality of millions of people living with autism who have unreliable or minimal speaking skills or can鈥檛 speak at all. This is the reality of living with something called full-body apraxia, a term I hadn鈥檛 heard until recently, despite my 30 years of being diagnosed with this and or that disorder. But apraxia perfectly sums up my lifelong struggles.

Apraxia is a neurological condition that affects an individual鈥檚 ability to plan and carry out intentional movements, even though the physical ability and desire to complete the action are present. It鈥檚 a disorder that can very easily deceive onlookers into believing the individual lacks an understanding of the most basic concepts of danger or human emotion, or that they fail to comprehend the simplest instructions 鈥� or are choosing not to comply. 

Most well-meaning autism professionals are creating and implementing therapies based on these inaccurate and dangerous assumptions: the assumption that their student鈥檚 inability to complete their assigned tasks are due to either a behavioral or cognitive impairment. This is despite the fact that many of us have the correct diagnosis of motor planning and/or sensory processing disorder. Many treatment providers fail to recognize how these motor and sensory differences might manifest when implementing hours of behavior training or when assessing our cognitive abilities. 

These dangerous assumptions lead to children with autism enduring hours of dehumanizing and at times abusive therapies. And these assumptions rob us of our right to receive an adequate education and limit our access to and acceptance of alternative therapies. 

We are burdened with the impossible task of proving our intelligence with bodies that are not fully connected to the intentions and instructions of our brains, with bodies that not only fail to move how we want, but in many cases, take over and do what they want. Often instead of what I intend, my body will say what it wants, point where it wants and complete loops that I have little to no control over. 

Because educators and treatment providers fail to understand this, our basic human rights are withheld until we are able to prove our intelligence, emotional awareness and worth. We are often not treated with dignity until we can prove that our outward appearances and actions are not a true reflection of our minds and hearts.

I was a victim of those dangerous assumptions for 30 long years. Educators and doctors repeatedly told my parents that I had the intelligence of a 4-year old, and I was relegated to living out my days in a windowless warehouse called a day program. These are programs designed to house those who society believes don鈥檛 know, understand or feel enough to recognize the inhumanity of the system in which they exist. 

This system holds overwhelmed families hostage, forcing them into accepting only their approved options. The experts running these systems are blind to our needs, and often dismiss parent questions and concerns, treating them as if they are unfamiliar with their own children.

That was my life, a lesson in patience and surrender. I was resigned to accept my bleak and uncertain future until my family learned about . This is a motor-based communication method that understood that my inability to communicate was due to a motor challenge rather than a cognitive one. 

It鈥檚 a therapy designed to support my regulation and my body movement, and has taught me how to override my body鈥檚 automatic actions and create new ones. It taught me how to coordinate my eyes with my hand in order to accurately point to letters on a letterboard to spell my thoughts. It鈥檚 a therapy that, within a year, had changed my life beyond recognition. It was no easy task. 

If my family would have taken my behavior as communication, which is common when you have nothing else to rely on, we wouldn鈥檛 have made it past the first few sessions. My body rebelled. The prospect of finally being able to communicate overwhelmed my system with excitement. I spent the first several months screaming and shaking uncontrollably, but with the skilled guidance and quiet determination of my practitioner, I slowly progressed from one large letter to all 26, from answering questions with only one possible response to spelling out my thoughts. 

It鈥檚 been a long journey but worth every moment. I鈥檓 now able to express my love for my family and my dreams and desires. And I can give my family strategies for helping me. This seemingly has changed everything about my life. 

I鈥檓 writing this article, pointing one letter at a time to my letterboard in the hopes of reaching the parents of nonspeaking autistics and the professionals supporting them. I am asking you to put aside everything you鈥檝e been taught about your autistic child or student, everything you鈥檝e been told or think you know, and imagine you might be wrong. Imagine they are in there, understanding everything but unable to show it. 

There is a growing community of parents, therapists and teachers who have discovered just that. They are uncovering what decades of experts have missed. Everything about my life changed when I was given a reliable means of communication. I am sharing my story because I am able to. I am one of the lucky few who have been freed from my prison of silence.

This piece was initially published in the .

The Trump administration’s weeks-long immigration enforcement campaign in Minneapolis, which has shuttered schools and terrified students and parents, has left one group particularly vulnerable: children with disabilities. 

Their families, who already fear their kids shutting down, running away, harming themselves or acting out when confronted under normal circumstances, have seen their anxiety skyrocket as they contemplate worst-case scenarios with federal agents. 

Tens of thousands of Minnesotans gathered in sub-zero temperatures last week to demonstrate against the federal government’s ongoing presence, including and .

Idil Ahmed, who lives near the epicenter of the daily raids and protests, worries about her 6-year-old autistic daughter having a meltdown during an encounter with Immigration and Customs Enforcement agents.

鈥淚f they stop us, all hell will break loose with my child,鈥� Ahmed said. 鈥淎nd there is no talking to these people.鈥�

Parents tell 社区黑料 they have no faith, after federal agents ripped a from her car and, according to school officials, used a this week to lure his mother from their home, that immigration officials would be patient with a child who can鈥檛 immediately respond to orders.

鈥淲hen I saw that image of this young boy with his backpack, I thought, 鈥楾hat could be my son,鈥欌�� said Najma Siyad, mother of a 5-year-old with autism. 

Both Ahmed and Siyad are members of Minneapolis’ Somali community, the largest in the United States and one that has for removal by President Donald Trump. 

They are among many Somali families whose children have autism; a neurodevelopmental condition that is .

They and other Somali-Americans say their children are doubly vulnerable by virtue of their race and disability: While the first is obvious, making them a potential mark for ICE and U.S. Customs and Border Protection, the second is not. 

They and other families with special needs kids have missed school, skipped doctor鈥檚 visits and, in many cases, are not getting the occupational, physical and speech therapy services that help their children manage their lives and progress academically.  

Ahmed said her daughter missed three consecutive weeks of occupational therapy because her therapist was too fearful to enter their neighborhood.

鈥淥T for us is so important,鈥� Ahmed said. 鈥淚t regulates her emotions, helps with fine motor skills, simple things like dressing, eating, body movements, the teaching of how to be physically independent.鈥�

And while multiple districts are offering remote learning to families afraid to leave their homes, online instruction isn鈥檛 a viable option for children who need a team of skilled school staff to access their education. 

鈥淚t鈥檚 not a solution for us,鈥� said Anisa Hagi-Mohamed, founder of an autism advocacy group called Maangaar Voices. 

Regression, both educationally and socially, is a constant concern, these parents say. But stronger still is their worry about their child coming face-to-face with a federal agent who doesn’t know 鈥� and perhaps doesn鈥檛 care 鈥� why they won鈥檛 interact. 

A spokesman for the Department of Homeland Security, which oversees ICE and CBP, said he was working on a response as to whether agents are trained to interact with autistic children and others with disabilities. Minnesota law for peace officers but this does not apply to ICE and CBP, Minneapolis advocates say.

Hagi-Mohamed has three kids, a 9-year-old son and two daughters, ages 5 and 8. All are 鈥渙n the autism spectrum,鈥� and each has their own unique vulnerability, she said.

Her middle child is nonverbal and frequently runs away to no particular destination. 

And her son looks far older than his age. He also has difficulty responding to anyone who commands him to act. 

鈥淗e would completely shut down, self harm and get hurt in the process,鈥� Hagi-Mohamed said, imagining him in an ICE encounter. 鈥淚 worry all the time.鈥�

She鈥檚 advised him not to talk to any adults outside of school or home. 

She鈥檚 frightened, too, for her 5-year-old, who treats all grownups with the same deference as her parents. 

鈥淭he stranger danger thing is not so strong in her,鈥� Hagi-Mohamed said. 鈥淪he is one of those kids who if you tell her to do something, she will do it.鈥�

These families say they have remained petrified ever since an ICE agent in Minneapolis killed unarmed motorist on Jan. 7 just after . Hours later, federal agents wreaked havoc at nearby Roosevelt High School. And on Jan. 24 in what may be a turning point to the strife in Minneapolis, federal agents shot and killed a 37-year-old nurse, Alex Pretti, setting off a fresh wave of terror and outrage.

Maren Christenson, executive director of the Multicultural Autism Action Network, said she lives so close to where Good was shot that she鈥檚 worried tear gas will seep through the family鈥檚 windows from the ongoing protests. 

Christenson鈥檚 14-year-old son, Simon Hofer, has autism and she can鈥檛 predict how he would respond to an ICE agent. 

The boy said he鈥檚 worried 鈥� not so much for himself, but for his friends. 

鈥淚 have been feeling angry, scared, sad,鈥� he told 社区黑料 on Thursday. 鈥淚t feels kind of hopeless sometimes and overwhelming. Friends of mine and classmates are afraid to go to school and so they attend online.鈥�

His mother has told the special education community that even if someone is Caucasian, is a citizen, has a disability and can articulate their challenges, they are not free from peril. 

Her advice? 鈥淐omply: do what they tell you to stay safe.鈥� 

But she鈥檚 unsure whether that strategy would work for people with autism who can become unmoored by such an encounter. Stress might hamper their ability to communicate, she said.

鈥淲e have held a number of community conversations and brainstormed, asking, 鈥榃hat could we do? What are people doing?鈥欌�� she said. 鈥淏ut the truth of the matter is we are in uncharted territory. There is no guidebook, no best practices for when your city is under siege.鈥�

A mother of two boys with autism who lives in the southern suburbs of Minneapolis and who asked not to be named to protect her family鈥檚 safety, said her children, ages 8 and 5, are just now learning about the concept of police. 

They cannot at all understand the complexity of immigration enforcement 鈥� or the harsh tactics that have come with it 鈥� so she鈥檚 keeping them mostly at home.

鈥淭here is only so much I can do when I am not with them,鈥� she said.

Hodan, the mother of an 18-year-old college student who has autism, said her son has always had high anxiety. But now, she said, it鈥檚 worse. She’s given him a list of a dozen phone numbers to call in an emergency that he keeps in his jeans and in his shoes. 

鈥淗e has his citizenship card in his pocket and when we drive, I make him put it on the center console,鈥� said his mom, who asked that her last name not to be used to protect her family.

Along with school and therapy sessions, also gone from families鈥� routines are winter afternoons at indoor play spaces, trips to the gym for their teenagers and other kid-friendly destinations. 

Siyad, a mother of three who lives 18 miles south of Minneapolis, close to St. Paul, said they recently took the 26-minute drive to the Minnesota Children’s Museum and had to turn around when they were three minutes away after witnessing an ICE encounter on the road. 

鈥淭hat fear is daily,鈥� she said. 鈥淚 am a naturalized citizen but I was not carrying my passport at the time. We had to turn around immediately.鈥�

The painful irony, she said, is that her children, like all of the others in this story, their parents said, are U.S. citizens. 

鈥淥ur kids are as American as apple pie,鈥� she said. 鈥淭his is their home.鈥�

Who should we believe?

A friend of mine, a young mother, vented her frustration on Facebook. 鈥淚n today鈥檚 day and age it鈥檚 not hard to spend a bit of time looking at the sources,鈥� she wrote. That sounds plausible 鈥� until you actually try it. Evaluating competing scientific claims is hard work. It requires the ability to parse complex studies, distinguish correlation from causation, weigh evidence and spot bias.

And here鈥檚 the uncomfortable truth: As the latest round of 12th-grade NAEP results makes clear, this kind of independent evaluation is simply beyond the reading comprehension ability of most Americans.

To make sense of the Tylenol鈥揳utism debate 鈥� or any competing claims purporting to be scientifically sound, you need to do far more than skim headlines. You must:

• Comprehend dense scientific language 鈥� including technical terms, qualifiers and statistical nuances.
  
• Distinguish types of evidence 鈥� a correlational study versus a randomized controlled trial, or anecdotal accounts versus peer-reviewed findings.
  
• Compare conflicting results 鈥� noting sample size, methodology and limitations.
  
• Evaluate credibility and motives 鈥� is the claim coming from trial lawyers, pharmaceutical companies, advocacy groups or independent researchers?
  
• Synthesize across sources to form a tentative, reasoned judgment.

These are advanced literacy skills. They align closely with reading levels that the National Assessment of Educational Progress labels as Proficient and Advanced. At those levels, readers can not only understand text, but critique it, integrate ideas across multiple sources and evaluate rhetorical effectiveness.

By contrast, readers at the Basic level can generally summarize explicit information in a single text. Those Below Basic struggle to do even that. But neither Basic or Below Basic readers have what it takes to effectively weigh competing claims 鈥� and that鈥檚 two-thirds of Americans. They can鈥檛 reconcile conflicts, judge evidence or detect bias. They may read the words, but they can鈥檛 test the arguments.

Some critics urge caution before declaring a reading emergency. Paul Thomas, for example, has flatly that 鈥渢here is no reading crisis,鈥� pointing to the way NAEP defines its benchmarks. Diane Ravitch that 鈥渟chools in crisis鈥� narratives are exaggerated. In doing so, she has cited Tom Loveless, a former Brookings scholar who has been in reminding readers that scoring as Proficient on NAEP is not the same thing as reading at grade level. Loveless has done valuable service in clarifying that the NAEP benchmark represents mastery of challenging subject matter, not minimum competence.

That distinction is real, and it deserves to be respected. Basic does not mean illiterate. A student scoring at NAEP Basic can generally follow directions, read newspapers and function in daily life.

The Tylenol controversy neatly illustrates what鈥檚 at stake. It may not be accurate to say two-thirds of Americans can鈥檛 read. But it is accurate to say that two-thirds of Americans don鈥檛 read well enough to independently evaluate the kinds of competing claims undergirding the autism debate and myriad other contemporary issues and controversies: the reality and causes of climate change, the long-term risks and benefits of artificial intelligence, the trade-offs in energy policy between fossil fuels and renewables, the economic and public-safety arguments surrounding immigration and trade, or Is crime so out of control that we should call in the National Guard?

That鈥檚 a real cost. Reading at only a Basic level leaves you unable to parse complex evidence, weigh competing arguments or judge credibility. You live instead in a state of intellectual second-class citizenship 鈥� with no option other than to defer to authority or rely on third parties, forever vulnerable to those whose political or financial interests may or may not align with your own.

To be clear, even advanced readers rely heavily on intermediaries 鈥� journalists, trusted experts, institutions 鈥� to help navigate scientific and policy debates. That鈥檚 normal. None of us can be experts in everything.

But the difference is choice. A strong reader can lean on intermediaries but also push back, double-check or seek alternative explanations. Basic readers have no such option. Their skepticism leads to cynicism or blind faith. They must either trust or reject the messenger wholesale.

That condition is what we might think of as literacy dependence. It means millions of citizens live in an intellectual state where their capacity to evaluate evidence is outsourced entirely to others. They are, in effect, governed not just politically, but epistemically.

Literacy dependence does more than limit independence: It actively aids and abets cynicism and partisanship. When you lack the ability to evaluate evidence for yourself, you are almost axiomatically dependent on the views of others 鈥� political figures, interest groups, media outlets 鈥� whose motivations may not mirror your own.

This dependence has consequences:

• Partisanship fills the gap. When people can鈥檛 evaluate claims, they default to tribal cues: which side said it, which identity group it affirms.
  
• Misinformation thrives. Simplistic, emotive narratives spread more easily than nuanced explanations, and those unable to interrogate them are more vulnerable.
  
• Legitimacy erodes. When people don鈥檛 understand the reasoning behind policies 鈥� whether vaccines, climate action or economic trade-offs 鈥� they may dismiss them as elite impositions.
  
• Inequality deepens. Those with higher literacy become a narrow class of people capable of evaluating evidence. Everyone else lives in dependence.

So let鈥檚 be clear: Yes, NAEP Proficient is a high bar. It鈥檚 wrong to equate it with grade level. But that doesn鈥檛 mean there鈥檚 no crisis. Because in a society where evaluating arguments is the lifeblood of citizenship, Basic is not enough. Functional literacy is not civic literacy. The problem is not whether you can read. It鈥檚 whether you can reason.

Saying autism is 鈥渁mong the most alarming public health crises in history,鈥� President Donald Trump Monday announced that pregnant women鈥檚 use of acetaminophen, the pain reliever often sold under the brand name Tylenol, is a cause of the neurodevelopmental condition.听

鈥淭o have families destroyed over this is just terrible,鈥� Trump said at a press conference, flanked by public health officials. 鈥淒on鈥檛 take it, just don鈥檛 take it.鈥�

Most pregnant women, including those with high fevers, should avoid the drug and 鈥渢ough it out,鈥� he added.

An of existing research found children whose mothers took acetaminophen were more likely to be autistic than other babies. The scientists who conducted the analysis were careful to say that there is no evidence that the drug causes the condition. have had mixed results or discounted a cause and effect.听

The U.S. Food and Drug Administration will immediately start the process of updating the over-the-counter analgesic鈥檚 safety label, said Secretary of Health and Human Services Robert F. Kennedy Jr. Federal officials will also seek approval for leucovorin, a form of folic acid sometimes prescribed off-label to treat autism. Evidence it works is scant.

鈥淥ur collective body of global research going back decades means that we have encyclopedic knowledge about the risks for autism, its possible causes and the highly variable experience of autistic individuals,鈥� members of the Coalition of Autism Scientists said in a statement reacting to the administration鈥檚 announcement. 鈥淭he data cited do not support the claim that Tylenol causes autism and leucovorin is a cure, and only stoke fear and falsely suggest hope when there is no simple answer.鈥�

The president also urged parents to forgo giving their newborns the Hepatitis B vaccine, insisting inaccurately that the infection is transmitted only by sex. Trump also suggested, contrary to , that autism is not diagnosed in Amish people and Cubans 鈥� something he wrongly attributed to members of the religious sect eschewing vaccinations and his belief that people in Cuba can鈥檛 afford acetaminophen.听

Trump said he and Kennedy first discussed the idea that autism is 鈥渁rtificially induced鈥� 20 years ago. 鈥淚t’s turning out that we understood a lot more than a lot of people who studied it, we think.鈥�

As the clock ticks down on Robert F. Kennedy鈥檚 self-imposed deadline to identify and reveal a supposed cause of autism, the U.S. Health and Human Services Department secretary has stoked fresh fears within the disability community. 

In April, Kennedy promised that he would spearhead a 鈥渕assive testing and research effort鈥� that would establish autism鈥檚 cause 鈥�.鈥� The study has yet to materialize, but in recent days the secretary has made statements that one researcher called 鈥渁nother round of 鈥榓utism-cause roulette.鈥� 鈥�

The churn 鈥渋s creating public health whiplash鈥� that may 鈥渄erail the search for the actual truth,鈥滼essica Steier, CEO of 鈥� an organization of medical and public health specialists 鈥� recently told a group of journalists. 

At a heated Sept. 4 , Kennedy repeated misinformation about vaccines, which he has long blamed for what he calls an 鈥渆pidemic鈥� of autism, despite dozens of studies to the contrary. 

The following day, the Wall Street Journal reported he was planning to release a report blaming pregnant women鈥檚 use of acetaminophen and low maternal levels of a form of the vitamin folic acid as autism鈥檚 root cause 鈥� a link mainstream scientists were . 

The effort to blame acetaminophen sparked an angry backlash among disability advocates, who noted a painful history of attempting to attribute autism to poor parenting, including the supposed indifference of emotionally frosty 鈥渞efrigerator mothers.”

Then, on Sept. 9, the department released “,” a 20-page report that said Kennedy has told the National Institutes of Health to move forward with compiling a massive database of medical and pharmacy records, insurance claims and even information generated by apps. The database will be used to research numerous conditions, including autism. 

President Donald Trump and Kennedy have given fresh fuel to longstanding fears that disease registries might be used to identify autistic people for forced sterilization, institutionalization and even death. Such a list was used by Nazi officials to identify children to be sent to 鈥渆uthanasia clinics.鈥�

Until the 1970s, similar lists were used to identify Americans to be subjected to forced sterilization and institutionalization. As a result, autism advocacy groups are often split on whether to recommend families participate in research that collects genetic or medical information.

In a urging civil commitment of homeless people and individuals with mental illnesses, Trump ordered federal housing and health officials to collect data on people who should be targeted. On Sunday, Fox News host Brian Kilmeade apologized for declaring on air that people who are mentally ill and unhoused should be subject to “.”

An overwhelming majority of scientists agree that autism is a naturally occurring neurotype and not a mental illness. But because their needs frequently go unmet, autistic people often struggle with anxiety, depression and other conditions.    

Even as Trump has declared autism “” and Kennedy claimed it “,” the administration has slashed tens of millions of dollars in funding for efforts to improve autistic people鈥檚 lives, Medicaid and other programs that people with disabilities rely on. 

In an essay published in The New York Times last month, Steier Kennedy and other officials have used to counter the avalanche of evidence disproving a link between vaccines and autism. Since 1998, 70 studies have looked for such a connection.

Of 26 that purported to establish a link, 18 were written by David and Mark Geier, a Maryland father-and-son team who were cited by medical authorities for performing dangerous experiments on autistic children and whose work was routinely rejected by scholarly journals. Kennedy has assigned David Geier 鈥� who was disciplined in 2011 for practicing medicine without a license 鈥� in HHS鈥� new search for a cause.

The other eight studies that found a link were retracted or discredited.  

Kennedy has received in referral fees and profits from law firms suing vaccine manufacturers.

Research has found no link between autism and acetaminophen, the active ingredient in Tylenol, Steier told reporters last week. One recent Swedish study of 2.5 million children included 186,000 who had been exposed to the painkiller. The babies were 5% to 7% more likely than the other children studied to have ADHD or autism, but an analysis involving their neurotypical siblings disproved any causal relationship, she said.    

But five days after the Senate hearing, and about two weeks after Trump publicly pressed Kennedy about his deadline for identifying autism鈥檚 cause, The Atlantic published a story quoting William Parker, an immunologist whose efforts to publish papers supposedly establishing a link have been routinely rebuffed by mainline journals. Parker said he had spoken to Kennedy five times in recent weeks and met on Zoom with National Institutes of Health Director Jay Bhattacharya. 

Parker, the magazine reported, was elated. 鈥淣othing was happening and 鈥� boom!鈥� he said. 鈥淚t鈥檚 beautiful.鈥�

Even as Kennedy perseveres, advocates are critical of his stance toward autistic people, says Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. She is among those who were disappointed to see the secretary redouble his efforts to create a 鈥渄isease registry鈥� mixing public and private data that medical privacy laws have kept separate. 

When the plan for the new, sweeping federal dataset was first announced in April, Bhattacharya tried to allay fears by promising it would adhere to 鈥渟tate-of-the-art鈥� privacy protections, but did not specify what those are. Privacy experts at the Brookings Institution and elsewhere say there is no legal roadmap to doing what Kennedy proposes.

Unlike many other agencies, the NIH is not bound by the Health Insurance Portability and Accountability Act, or HIPAA, the main law that restricts who can access private medical information. Instead, NIH  to the Privacy Act of 1974, which puts strict limits on the collection of personally identifiable information. 

Uproar notwithstanding, Kennedy鈥檚 new report did not clarify how individual medical records would be protected. Repeated requests for comment from HHS went unanswered. 

According to a report , people typically have no idea they will have little or no control over whether their health insurer or the maker of a wearable fitness tracker will sell or otherwise mine their data for commercial purposes. 

鈥淯nder the Trump administration鈥檚 plan, user health data would flow directly into an unregulated ecosystem of third-party apps where sensitive health details could be , or even cross-referenced with ,鈥� the report warns. 鈥淚n effect, the initiative centralizes some of the nation鈥檚 most sensitive records, while simultaneously lowering or ignoring guardrails that have long protected them.鈥� 

Gross says she thinks it is unlikely NIH is compiling a registry that identifies autists. But instead of allaying concerns, Kennedy has pushed people with disabilities out of the conversation and eliminated research into their priorities.

The federal office that brings together autistic people, scholars and representatives of numerous cabinet departments to set research priorities, the Interagency Autism Coordinating Committee, has not been active since Kennedy鈥檚 appointment, Gross says. HHS did not respond to questions about the committee鈥檚 status. 

Earlier this year, her organization lost a grant to collaborate on addressing longstanding and widely acknowledged gender bias and ableism in diagnosing autistic people by using a questionnaire asking about their experiences, rather than others鈥� subjective impressions.  

鈥淚t was a really promising project, and it was pretty far along,鈥� says Gross. 

During the first four months of the year, at least $31 million, or 26%, was cut from NIH’s autism research budget. many of the reductions were made to adhere to executive orders on 鈥済ender ideology.鈥�

鈥淲e haven鈥檛 even gotten to what is the utility of doing this,鈥� Gross says, regarding ongoing efforts to resuscitate disproven theories. 鈥淗ow is this going to improve the lives of autistic people?鈥�     

Arizona Autism Charter Schools, whose founder Diana Diaz-Harrison has been tapped to oversee the education of children with disabilities in President Donald Trump鈥檚 second administration, has used controversial, potentially dangerous disciplinary practices on its students at an unusually high rate.听

In the 2020-21 academic year, the latest for which federal data is available, school staff physically restrained 41% of its students and put 20% in seclusion, which is defined by the U.S. Department of Education as the involuntary confinement of a child, typically in a locked room. That鈥檚 50% higher than the rate at which students are restrained and confined nationally. 

For 35 years, the U.S. Government Accountability Office and have documented in which students as young as 4 were injured, traumatized or even killed while being isolated or held down 鈥� often in response to nonviolent behavior. In states that ban the practices, educators typically are allowed to intervene if there is imminent danger of serious physical injury to the student or to others.

Many states 鈥� including Arizona 鈥� have outlawed or severely curtailed the circumstances under which the practices are allowed. In 2017, federal education officials warned that in restraint and seclusion likely constitute discrimination. Eighty percent of U.S. students who are physically restrained have disabilities, as do 77% of those secluded.听听

In 2019, then-Education Secretary Betsy DeVos to address inappropriate restraint and seclusion in U.S. schools. In January 2025, her outgoing successor, Miguel Cardona, called on states and school districts to entirely. 

At the time the data was collected, the charter network founded by Diaz-Harrison had two schools serving 283 students, 116 of whom were restrained and 57 secluded. Ninety-nine of the schools鈥� 146 K-5 students, or 68%, had been restrained.

Located in the same area served by the Arizona Autism Charter Schools, the 27,000-student Phoenix Union High School District restrained three students in 2020-21 and secluded none. The nearby Mesa Unified District, with more than 50,000 students, restrained 93 and secluded 67. 

In August 2020, in the midst of the COVID pandemic, schools to reopen for students who had no other safe place to spend the day and to prioritize serving children with disabilities, many of whom had missed months of crucial special education services. Schools to in-person schooling on March 15, 2021.

Of Arizona鈥檚 1 million K-12 students, 675 were restrained in 2020-21, as were 28,000 of 49 million children nationally.听

Ron Harrison, the interim CEO of Arizona Autism Charter Schools, noted that unlike most other schools, the student population of Arizona Autism Charter is comprised almost entirely of children who have autism or learning differences.  

鈥淥ur intervention rates may be higher than traditional schools because of the distinct student population we serve and our practice to err on the side of reporting every applicable incident, regardless of how minor,鈥� wrote Harrison in a statement. 鈥淏y comparison, underreporting of similar interventions is rampant nationally 鈥� especially among large school districts 鈥� and has been the subject of federal scrutiny.鈥�

Harrison added that independently tracked parent satisfaction scores at Arizona Autism Charter schools 鈥渉ave never fallen below 92%鈥� and most recently were higher than 97%.

Diaz-Harrison, who has taken a leave from Arizona Autism Charter to focus on her new federal role, did not respond to requests for comment.

Since 2020-21, Arizona Autism Charter Schools has grown to five schools enrolling nearly 1,000 students. The schools use a controversial intervention called applied behavior analysis, or ABA, that is opposed by many autistic adults as coercive and traumatizing. Created by the researcher behind LGBTQ conversion therapy, ABA attempts to train children to appear and behave like their neurotypical peers. It is widely depicted as the gold standard despite scant independent evidence of its effectiveness and mounting research documenting its harms. 

For a story announcing her appointment as the U.S. Education Department鈥檚 deputy assistant secretary for special education and rehabilitative services, Diaz-Harrsion provided a statement to 社区黑料 applauding the approach. 鈥淔or the autism community, specifically, many families seek schools that integrate positive behavioral strategies,鈥� she said. 鈥淭he evidence supporting behavioral therapy is extensive and well-established. It has been endorsed by the U.S. surgeon general and the American Academy of Pediatrics as an effective, research-backed approach for individuals with autism.鈥�     

In 2010, the Association for Behavior Analysis International opposing 鈥渋nappropriate鈥� restraint and seclusion but supporting the interventions when used by ABA practitioners as part of a formal plan. 

鈥淲hen used in the context of a behavior intervention plan, restraint in some cases serves both a protective and a therapeutic function,鈥� the organization wrote. 鈥淭hese procedures can reduce risks of injury and can facilitate learning opportunities that support appropriate behavior.鈥�

There is that restraint and seclusion have a positive effect on student behavior. Indeed, if the discipline is traumatizing, a child can manifest new behaviors, according to guidance from federal education officials.

鈥淎ll of our teachers and staff members who interact with students are specially trained,鈥� Harrison said. 鈥淲hen a behavioral intervention is required to ensure the safety of students or staff members, we follow strict protocols which are never punitive and always designed to de-escalate the situation.鈥�

Federal education officials have school systems to train staff on de-escalation and to institute protocols for addressing inappropriate behavior without resorting to punitive measures. When a student with a disability is restrained or secluded, U.S. officials warn, it could mean that their special education plan may be insufficient or not providing the right services.

Editor’s Note: This story was updated on May 15, 2025 to include statements from Ron Harrison, the interim CEO of Arizona Autism Charter Schools.

Diana Diaz-Harrison, whose son is autistic, said that in she hopes to continue her efforts to help others launch autism charter schools throughout the country. Her schools, she said in remarks captured on , are a testament to what happens 鈥渨hen parents like me are empowered to create solutions.鈥�

鈥淢y vision is to expand school choice for special needs families 鈥� whether through charter schools, private options, voucher programs, or other parent-empowered models,鈥� she said in a statement to 社区黑料. .

The five-school network uses a controversial intervention that attempts to train children to appear and behave like their neurotypical peers. Created by the researcher behind LGBTQ conversion therapy, applied behavior analysis, or ABA, is widely depicted as the gold standard despite scant independent evidence of its effectiveness and mounting research documenting its harms. 

Diaz-Harrison opened the network鈥檚 first school in 2014 as a free, public alternative to private schools for autistic children, which are popular in Arizona but typically charge tens of thousands of dollars a year in tuition. Her Arizona charter schools are a 501(c)3 nonprofit financed by state and federal per-pupil funds. ABA is specifically endorsed by Arizona education officials as a strategy to use with autistic students.

In the time since those charters opened, ABA has grown to be a national, multi-billion-dollar industry, with for-profit companies tapping public and private insurance to pay for as much as 40 hours a week of one-on-one therapy. The intervention uses repeated, rapid-fire commands that bring rewards and punishments to change a child鈥檚 behavior and communication style.

A 74 investigation last year showed that most data supporting ABA’s effectiveness is drawn from research conducted by industry practitioners. Independent analyses, including a years-long U.S. Department of Defense review, found little evidence the intervention works. Former patients who underwent the therapy as children reported severe, lasting mental health effects, including PTSD.

Diaz-Harrison told 社区黑料 the therapy is both valuable and sought-after. 鈥淔or the autism community, specifically, many families seek schools that integrate positive behavioral strategies,鈥� she says. 鈥淭he evidence supporting behavioral therapy is extensive and well-established. It has been endorsed by the U.S. surgeon general and the American Academy of Pediatrics as an effective, research-backed approach for individuals with autism.鈥�

During her visit, McMahon told students and staff she was eager to tell President Donald Trump about the schools. 鈥淗e doesn鈥檛 believe any child, whether they have neuro-difficulties or any other problems, should be trapped in a school and not have the facilities that they need,鈥� she said. 

Since Trump鈥檚 second inauguration, he has issued numerous orders that have alarmed disability advocates and the autistic community. Though both edicts contradict longstanding federal laws, in March he ordered the closure of the Education Department and said responsibility for special education will be transferred to the U.S. Department of Health and Human Services.

About half of the Education Department鈥檚 staff has been fired, including most of the people responsible for investigating what had been a backlog of some 6,000 disability discrimination complaints. Though it鈥檚 unclear whether Trump and McMahon may legally disregard special education funding laws and allow states to spend federal dollars as they see fit, both have said they favor giving local officials as much decision-making power as possible.

Meanwhile, HHS Secretary Robert F. Kennedy Jr. has stoked fear in the autistic community by announcing a new effort to tie autism to vaccines or other 鈥渆nvironmental toxins鈥� 鈥� a hypothesis discredited by dozens of studies. The man he appointed to head the study has been cited for practicing medicine without a license and prescribing dangerous drugs to autistic children. 

Last week, the new head of the National Institutes of Health announced that an unprecedented compilation of medical, pharmaceutical and insurance records would be used to create an autism 鈥�disease registry鈥� 鈥� a kind of list historically used to sterilize, institutionalize and even 鈥渆uthanize鈥� autistic people. HHS later walked back the statement, saying the database under construction would have privacy guardrails.

Among other responsibilities, the offices Diaz-Harrison will head identify strategies for improving instruction for children with disabilities and ensure that as they grow up, they are able to be as independent as possible. The disability community has raised concerns that the administration is retreating from these goals.   

Advocates have said they fear the changes pave the way for a return to the practice of separating students with disabilities in dedicated special ed classrooms rather than having them attend class with typically developing peers. The Individuals with Disabilities in Education Act guarantees special education students the right to instruction in the 鈥渓east restrictive environment鈥� possible.          

Families鈥� preferences vary widely, with some parents of autistic children refusing any form of behavior therapy, while others want their kids in settings with children who share their needs. Many insist on grade-level instruction in general education classrooms 

Diaz-Harrison has a master’s degree in education and worked as a bilingual teacher in California early in her career. From the late 1990s until she began supporting her son full time, she worked as a public relations strategist and a reporter and anchor for the Spanish-language broadcast network Univision. 

In 2014, frustrated with her son鈥檚 school options, she who applied for permission to open what was then a single K-5 school serving 90 children. The network now has about 1,000 students in all grades and features an online program. 

At the end of the 2023-24 academic year, of the network’s students scored proficient or highly proficient on Arizona鈥檚 annual reading exam, while 4% passed the math assessments.      

In December 2022, the network won a $1 million , an award created by Jeff and Janine Yass. The billionaire investors have a long track record of donating to Republican political candidates and organizations that support school choice. 

One of the award’s creators, Jeanne Allen, is CEO of the Center for Education Reform. The center nominated Diaz-Harrison for the federal role. 

Yass award winners were featured at the 2023 meeting of the American Legislative Exchange Council, or ALEC, a conservative forum where state lawmakers are given model bills on education and other policies to introduce in their respective statehouses. 

Diaz-Harrison has partnered with a Florida autism school to create a national to help people start schools like hers throughout the country. She told 社区黑料 the effort has so far supported teams of hopeful school founders from Louisiana, Texas, Florida, Alabama and Nevada. 

Parents of young autistic children and autistic adults often disagree about ABA. Told by their pediatrician or the person who diagnosed their child as autistic that they have a narrow window in which to intervene, families fight to get the therapy. Adults who have experienced it, however, report lasting trauma and have lobbied for research 鈥� much of it now at risk of being defunded by Kennedy 鈥� into more effective and humane alternatives.

Last week, National Institutes of Health Director Dr. Jay Bhattacharya announced that his office would draw on an unprecedented array of public and private records to establish a 鈥渄isease registry鈥� centralizing information on autistic people鈥檚 prescription drug use, insurance claims, Medicare and Medicaid records, genetic and lab tests and even data from smartwatches. 

In response to the strong pushback that followed, the department attempted to walk back the announcement 鈥� and blame the media for the furor.

鈥淭he original narrative incorrectly suggested that HHS was creating an autism registry to track individuals using personal data,鈥� the department said in a statement to 社区黑料. 鈥淭his is not accurate. The NIH is developing a secure data repository that will allow researchers to analyze large-scale, de-identified data. The director did not misspeak; rather, the term 鈥榬egistry鈥� was misused by the media, implying an unethical method of data collection.鈥�

However, using video of the NIH announcement, the fact-checking site Snopes that the original reporting was accurate. 

Bhattacharya’s initiative followed a promise by U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. that by September, new research sponsored by his department would responsible for what he called an autism epidemic. That theory contradicts mainstream science that links autism to genes and the increasing number of diagnoses to better testing 鈥� particularly in low-income households and among children of color. 

Though many autistic children are able to prepare for college and a career when given the proper supports, 鈥淭hese are kids who will never pay taxes,鈥� Kennedy said. 鈥淭hey’ll never hold a job. They’ll never play baseball. They’ll never . They’ll never go out on a date. Many of them will never use a toilet unassisted.”

To head the study, Kennedy appointed a man cited by Maryland officials for practicing medicine without a license. David Geier was also found to have improperly prescribed puberty blockers for autistic children and administered a harmful drug used to treat lead poisoning that is not approved for use in the U.S. 

Given Kennedy鈥檚 public proclamations, advocates said they would take a wait-and-see stance to the announcement that the new database would not contain a registry.  

鈥淭his is positive news, but given this administration鈥檚 previous actions and comments, particularly those related to autism over the last several weeks, we are not assuming that there is no longer anything to worry about,鈥� leaders of the Autistic Self Advocacy Network said in a statement. 鈥淕iven everything this administration is saying and doing about autism,  and public health, we have every reason to distrust this initiative under current leadership at HHS.鈥�

The word “registry” is particularly polarizing to disability advocates, who note that such lists 鈥� which still exist in some U.S. states 鈥� were used to identify autistic children who were killed in Nazi Germany鈥檚 experimental 鈥渆uthanasia clinics,鈥� as well as people to be sterilized and institutionalized in the United States.  

鈥� ‘Registry鈥� and 鈥榙ata collection鈥� can mean many things,鈥� the network said, adding that if advocates had been included in discussions about the proposed research, they could have asked for clarity: 鈥淯nder previous administrations led by both Democrats and Republicans, we and other organizations had direct lines of communication with autism policy experts inside HHS.鈥�

Several days before the NIH announcement was reported, four dozen organizations that advocate for autistic people issued a rare collective statement criticizing Kennedy鈥檚 repeated, disproven claims about a condition many scientists agree is a naturally occurring neurotype. 

鈥淲e are deeply concerned by growing public rhetoric and policy decisions,鈥� said . 鈥淐laims that autism is 鈥榩reventable鈥� [are] not supported by scientific consensus and perpetuate stigma. Language framing autism as a 鈥榗hronic disease,鈥� a 鈥榗hildhood disease鈥� or 鈥榚pidemic鈥� distorts public understanding and undermines respect for autistic people.鈥�

Unknown is whether the NIH plan will indeed merge records that contain sensitive personal details with datasets that don鈥檛 include people鈥檚 identifying information. 鈥淗HS will 鈥� spend tens of millions of dollars linking existing federal databases,鈥� the trade publication , attributing the information to a department statement. 鈥淭he National Institutes of Health (NIH) working to partner with the Centers for Medicare & Medicaid Services, the Centers for Disease Control & Prevention, the Department of Defense, the Department of Veterans Affairs and other agencies to create 鈥榓 comprehensive real-world health dataset that maintains the highest standards of security and patient privacy.鈥� 鈥�

In its statement to 社区黑料, the department said the dataset being assembled 鈥渨ould be fully compliant with these laws and regulations to protect Americans鈥� sensitive health information.鈥� 

鈥淒ata science can advance our understanding of biomedical and behavioral phenomena and contribute to breakthroughs that improve health by mining large sources of data, such as databases and datasets, for information,鈥� said the statement. 鈥淩esearchers can use techniques like machine learning and AI in data science to help analyze data and make predictions about health outcomes and disease incidence.鈥�

As of press time, more than 150 researchers belonging to the recently formed Coalition of Autism Scientists had signed a letter calling on HHS and NIH to observe rigorous standards. Kennedy鈥檚 controversial dismissal of mainstream beliefs that better diagnosis is a major factor behind the rise in autism rates, and his plans to find, within a few months, an environmental toxin that causes autism, have . 

鈥淲e were deeply troubled to hear [Kennedy] dismiss past research, downplay the causal role of genes and portray autistic people in ways that counter our experiences and demean their value to society,鈥� the letter says.  

Among other measures, researchers urged Kennedy to pre-register the protocol for any planned study. This voluntary practice 鈥� creating a time-stamped, public document outlining what the study will attempt to determine 鈥� is what is sometimes referred to as 鈥渉ypothesizing after results are known.” The scholars also want HHS鈥� researchers to share their data with independent analysts for verification. 

Until the 1970s, numerous U.S. states used registries to identify disabled people to be subjected to forced sterilization and institutionalization. A number of states still maintain lists of autists.

鈥淭he history there is deeply, deeply disturbed,鈥� says Larkin Taylor-Parker, legal director of the Autistic Self Advocacy Network. 鈥淚t doesn’t usually end well for us. It has ended in murder 鈥� industrial-scale incarceration and murder.鈥� 

In given to NIH leaders April 21, Bhattacharya said the registry will draw from an unprecedented compilation of public and private databases to be used for U.S. Secretary of Health and Human Services Robert F. Kennedy Jr.鈥檚 controversial new study of autism. In addition to information collected by the Centers for Medicare and Medicaid Services, the registry and research database will include pharmacy records, private insurer claims, lab and genetic testing information, treatment records from the Department of Veterans Affairs and Indian Health Service 鈥� even data from smartwatches.

Though the plan described is still too vague for advocates to know for sure, NIH might also tap state records that identify neurodivergent children who receive special education services. In the 2022-23 school year, almost 1 million autistic students attended U.S. schools.  

Bhattacharya promised 鈥渟tate of the art鈥� protections to guard patient confidentiality, explaining that 10 to 20 groups of outside researchers would be allowed to use the data but not download it. It is unclear whether this meets any legal standard for privacy safeguards.  

As 社区黑料 has reported, the man tapped to lead Kennedy’s study was found to have practiced medicine on autistic children without a license, prescribing a dangerous drug not approved for use in the U.S. and improperly giving them puberty blockers. 

Kennedy, a longtime anti-vaxxer, intends the study to find a link between autism and vaccines. More than two dozen studies have discredited the notion of any connection.

With few details released about how the NIH will compile data 鈥� some of which is subject to privacy restrictions at various federal agencies鈥� it鈥檚 unclear how patient confidentiality will be maintained. 

NIH researchers are not bound by the Health Insurance Portability and Accountability Act, or HIPAA, the main law that restricts who can access private medical information, and under what circumstances. Instead, the institutes to the Privacy Act of 1974, which protects 鈥渞ecords that can be retrieved by personal identifiers such as a name, Social Security number or other identifying number or symbol鈥� and, with limited exceptions, 鈥減rohibits disclosure of personally identifiable records without the written consent of the individual(s) to whom the records pertain.鈥�

The privacy law was enacted in large part to stop federal agencies from sharing damning information about people singled out by former President Richard Nixon and former FBI Director J. Edgar Hoover as political enemies. Since President Donald Trump鈥檚 second inauguration, privacy law experts have that Elon Musk鈥檚 Department of Government Efficiency has gone into sensitive government records systems without legal authority to do so. Some courts have ordered a stop to the practice.

鈥淭he thought of a federal registry of autistic people that includes incredibly personal data that makes us very easy to find deprives us of the privacy that other citizens enjoy,鈥� says Taylor-Parker. 鈥淚t taps some of my community’s deepest fears and the specters of some of the most horrifying episodes in our history.鈥�

In the 1930s and 鈥�40s, German and Austrian public health officials of 鈥渕alformed children鈥� to the Third Reich’s Ministry of the Interior for a list of those targeted for sterilization or death. Among those supplying names was early autism researcher and Nazi collaborator Dr. Hans Asperger. He identified nearly 2,700 children, most commonly citing 鈥渆ducation problems鈥� as the reason.

Until 2013, Asperger鈥檚 Syndrome was a diagnosis given to autistic children who were believed to be 鈥渉igher functioning鈥� 鈥� Asperger himself called the visibly intelligent children he experimented on 鈥渓ittle professors.鈥� 

Most advocates now recognize efforts to distinguish higher- and lower-functioning autists as false and harmful. In his presentation to NIH staff, however, Bhattacharya said the new research will consider the perceived severity of subjects鈥� autism. 

“I recognize, of course, that autism, there’s a range of manifestations ranging from highly functioning children to children that are quite severely disabled,鈥� he said, according to . 鈥淎nd of course, the research will account very carefully for that.” 

This, too, terrifies Taylor-Parker, who notes that autistic people who are nonverbal or also have a developmental disability have historically been involuntarily placed in asylums and other facilities and are still often excluded from general education classrooms. 

鈥淲e already have a societywide problem鈥ith ignoring the support needs of people who can hold down a job, can drive a car and maybe score well on an IQ test,鈥� she says. 鈥淥n the other hand, we ignore the capacities, the capability, the humanity of people who don’t do those things.鈥�

Further, she points out, compiling as much diagnostic and prescription information on autistic individuals as possible is likely to uncover other private information that people fear could end up on future 鈥渄isease registries.鈥� 

鈥淚’m very concerned about this becoming a slippery slope,鈥� says Taylor-Parker. 鈥淭here is very good research demonstrating that [autistic people] are trans and gender-nonconforming at above-average rates.鈥�

In the interest of establishing the prevalence of autism and in some cases understanding which services are helpful, several states and two national philanthropies . With a goal of ensuring that as many children as possible are offered early intervention services, at least two contain identifying information. 

Good intentions notwithstanding, many autistic people oppose the existence of any registry, citing the historical danger they pose for disabled people in general. Indeed, recognizing this last year, New Hampshire lawmakers eliminated the state鈥檚 autism registry. 

Since Kennedy鈥檚 appointment, autistic people have repeatedly decried his plan to again attempt to link autism to vaccines, despite dozens of credible studies that have ruled out immunizations as a cause. His plan, they charge, would divert resources from research into therapies and services that can improve the lives of people with disabilities. 

Says Taylor-Parker, 鈥淭hat discussion sucks the oxygen out of the room when it comes to making life better for autistic people who are already here and who will be born in the near future.鈥�

According to the NIH, will be posted in the coming days. 

In 2011, the Maryland Board of Physicians , who is not a physician and has only a bachelor鈥檚 degree, with illegally practicing medicine alongside his father, Mark Geier, a doctor who died last month. The two treated children with Lupron, a drug used to lower testosterone or estrogen levels in patients with prostate cancer, endometriosis and other diseases, along with chelation therapy, which leaches heavy metals from the body, as in lead poisoning.

Those treatments follow a widely discredited theory that blames autism on exposure to mercury in preservatives used in vaccines. Kennedy has promulgated that theory even though more than two dozen large, rigorous studies have discredited any link between vaccines and autism.

Autistic advocates decried Kennedy鈥檚 appointment, fearing his refusal to give up on efforts to establish one would refocus federal resources on finding a 鈥渃ure鈥� for what most scientists now believe is a naturally occurring human neurotype.  

鈥淎nyone who would fleece families with fake cures should not be trusted to interpret a scientific study, let alone conduct one,鈥� the Autistic Self Advocacy Network said in David Geier鈥檚 hiring. 鈥淭his move toward conspiracy theories and junk science puts all our lives at risk.鈥�

A request for comment from the U.S. Department of Health and Human Services was not immediately answered. The Geiers鈥� Institute of Chronic Illnesses, Inc., does not have a website.   

The network’s statement calls Kennedy鈥檚 selection of Geier 鈥渁 clear indication that the Trump administration plans to rig the upcoming study and claim that it proves vaccines cause autism. This will set public health back decades at a time when vaccine hesitancy and infectious disease are both spreading at alarming rates.鈥�

Among other claims, the Maryland board found that the Geiers diagnosed precocious puberty 鈥� a medical condition where children鈥檚 bodies mature too early 鈥� in an unusually large number of patients, did so without using the standard protocol for establishing whether the children in fact had the condition and failed to tell their families that the chelation drug prescribed was not authorized for use in the United States. 

Mark Geier鈥檚 medical licenses eventually were suspended by the seven states where he and his son operated autism treatment centers under a variety of names, including the Genetic Centers of America. The Geiers conducted several studies linking vaccines to autism, only to have them from publication by scientific journals. They in hundreds of lawsuits brought by people who claim to have been injured by immunizations. 

Lupron is a brand name for a GnRH analogue drug that pauses puberty without causing permanent physical changes. The drugs are for children who experience gender nonconformity or gender dysphoria at the onset of puberty. 

In January, a published in JAMA Pediatrics found the drugs were prescribed for fewer than 0.1% of youth in an insurance claims database covering more than 5 million patients ages 8 to 17. Only 926 youth with a gender-related diagnosis received puberty blockers from 2018 through 2022. No patient under the age of 12 was given the drugs.

Nonetheless, in recent years, 26 states have banned gender-affirming care for young people. The U.S. Supreme Court is expected to rule soon on challenges to the laws. In a January executive order, President Donald Trump to restrict such care.  

I spent my time in special ed learning basic mathematics and the alphabet, even in fourth grade. My classmates, regardless of the level of support they needed, were all taught the same material in the same way. Our education was not personally tailored. 

I was separated from my general education peers all day and would see them only during recess. This made it quite difficult to connect with them, as we had no class time together. I was quite timid, so approaching anyone from the general education classes made me very nervous. 

When I moved on to general education in middle school, I found that special education hadn’t prepared me at all. I kept failing my classes, despite my best efforts, and I failed to graduate. Special ed also didn鈥檛 help me with my social skills, as I made no friends in elementary or middle school.

I felt like I had been thrown into a lion鈥檚 den without any weapons. I was not prepared in the slightest. 

Only through litigation was I able to move to a neurodiversity-affirming school. The district offered my family settlement money after we argued in a lawsuit that the school had failed on its promise to educate me. Because of those funds, I was able to attend a high school for autistic students who learn differently, like me. 

Something is terribly wrong with a special education system that consistently fails those it is supposed to help. An analysis from the Center for American Progress shows that special education students are from high school than their general education peers. The same analysis showed that, in 2015, students with disabilities were substantially less likely to be at or above proficiency in mathematics or reading. 

This is a system that needs radical reform. 

First, special ed students must be integrated with the general education peers. Being segregated made me feel like there was something inherently wrong with me, as if putting me in general education would lower the quality of the classroom. Integration would have exposed me to the type of material I needed once I entered middle school. As Jennifer Kurth, a professor of special education at the University of Kansas, in an interview, 鈥渟tudy after study is showing that there’s no harm to being included, but there’s great risks of harm to being segregated. Kids [with disabilities] who are included develop better academic skills, better communication skills, better social skills, just kind of everything we try to measure.鈥� 

It cannot be overstated how demoralizing being put in a segregated classroom is. It makes you feel like you have a pathology that hurts other students. It makes you feel like you鈥檙e less intelligent and less capable. My classmates at the time told me it felt like we were hopeless causes. My peers said this in elementary school. Nobody should have to go through that, especially at a young age. 

Second, schools need to abandon the cookie-cutter approach to special education students, where everyone is taught the same way and receives the same accommodations. At the neurodiversity-affirming high school I went to, every student was taught differently, at their own pace. Because of this I went from being a middle schooler at a 4th grade reading level to an undergraduate at UC Berkeley and the founder of a nonprofit, . 

Third, students with disabilities and their families should be allowed to decide what services and programs they receive. At the moment, schools often make these determinations. In California, where I live, many neurodivergent individuals are able to choose what services and programs they receive through the Self-Determination Program. shows that nearly 70% of respondents are satisfied with the program. Through , I鈥檝e been able to receive tutoring and technology vital for my educational journey. 

Before I had access to the program, my family had to sue in order for me to be able to determine what programs and services I receive. I couldn’t even get a tutor who specialized in students with disabilities until we put up a fight. It shouldn鈥檛 be this hard. 

If I had been able to choose which services I get, my family and I would have been able to avoid a litigation battle. If I had been able to integrate with my general education peers in elementary school, I would鈥檝e been better prepared for middle school and for building social skills. Simply put, a lot of the mental anguish I went through would have been mitigated.

Integration and self-determination should be implemented in special education across the country.

It worked. Reimbursements rose from $1.7 million in state funds to 41 providers in 2017 to to 328 providers in state and Medicaid funds through the Early Intensive Developmental and Behavioral Intervention benefit in 2023.

Most of those new centers engaged in applied behavior analysis. ABA is an intensive behavior modification technique that aims to make autistic children act more like their typically developing peers by “extinguishing” certain traits through compliance with specific repeated commands. (A 74 investigation last year demonstrated that there is no reliable data to show the treatment works, and that it may actually cause harm to patients.)

Last year, the FBI began investigating whether some of those treatment centers have defrauded Medicaid, billing for services never provided. Though investigators have not said how many for-profit centers they are looking into or who their clients are, many are believed to enroll the children of East African immigrants, who are particularly vulnerable because of the lack of culturally appropriate services. There are also indications the alleged fraudsters may have ties to defendants in the country鈥檚 largest , in which nonexistent food distribution sites supposedly created to provide children with meals during COVID-related school closures billed the state for hundreds of millions of dollars.

As the 2025 legislative session gets underway, state lawmakers are holding hearings on proposals to tighten oversight. Most of the testimony has centered on to require services to be provided by licensed professionals in safe settings. But some autism advocates have expressed concern that those standards will entrench ABA as the dominant approach 鈥� one that, among other things, is replacing other special education services in schools 鈥� instead of supporting alternatives that they say are more effective and humane.     

One of those who testified is Native American Jules Edwards, the autistic parent of three autistic youth, ages 11, 19 and 21, and a member of the Anishinaabe Eagle Clan. After , she told a state Senate committee that ABA is not a therapy, but 鈥渁 specific methodology that was created by the same people that created gay conversion therapy.鈥�  

Right now, providers are not required to be licensed; are allowed to describe employees who may have only a high school diploma as therapists; and are not held to the same safety standards as even home day care centers, Edwards testified. 鈥淒espite the ABA industry lobbying for more power over the autism community, they need their power restricted until they can prove with empirical and independent evidence that they are doing what they claim they are doing鈥� in terms of providing effective, safe services.  

Edwards recently expanded on her testimony in an interview with 社区黑料. This conversation has been edited for length and clarity.

What motivated you to testify?

When my children were diagnosed with autism, I threw myself into research. I learned about autism and I learned about interventions. I learned from professionals, parents and autistic adults that autism is a social, communication and sensory disability, and not a behavioral disorder. I learned that applied behavior analysis is a behavior modification program that requires autistic children to suppress their natural way of being in order to please the adults around them. 

That didn’t make sense to me. Why wouldn’t we want to address any underlying needs first? Typically, autistic kids specifically need to learn the why, because we’re bottom-up learners. We like to gather information about things before taking action. But ABA requires a top-down, authoritative approach, where autistic children are not allowed to ask why. They are required to comply with authority, and that poses a lifelong danger to that child. 

Testifying was an opportunity to highlight the fraud, waste and abuse that happens within the ABA industry. American taxpayers pay billions of dollars per year to enrich private equity investors under the guise of an autism therapy that works. However, ABA isn’t a therapy, and it hasn’t been proven to improve quality of life. 

The Department of Defense鈥檚 2020 reported that 76% of children in ABA showed no improvement after one year, 16% had improved, but 9% were worse after a year of treatment. That really brings into question the cost-effectiveness of ABA. When we’re talking about fraud and waste of Medicaid dollars or taxpayer dollars generally, we need to be honest about the actual outcomes. 

But there’s little oversight. The state doesn’t require health and safety procedures, behavior guidance, standards, first aid, CPR. They aren’t required to have a mental health response, crisis response or suicide intervention plan. They don’t have to provide culturally responsive treatment practices. 

A 5-year-old child was just in a hyperbaric chamber in an unaccredited ABA center in Troy, Michigan. The chamber exploded with the child inside, and he passed away.  We know that hyperbaric chambers aren’t actually a treatment or cure for autism or anything like that. It’s not approved by the FDA. If there was oversight, if there was licensing, if there were safety requirements that prevented this kind of alternative treatment it could have saved that boy鈥檚 life. 

The state鈥檚 suggests 鈥渕odern鈥� ABA has largely stopped using punishments to discourage certain behaviors. But I have heard parents and autistic adults who have experienced ABA say it is still coercive. Can you give us an example?

Planned ignoring, which is a technique used in ABA, basically denies the humanity of the child who is subjected to it. When we’re children, whether you’re autistic or not, and you’re hanging out with another kid, and the other kid is pretending you don’t even exist, it’s dehumanizing. But now, within ABA, the adults do that to the children.

Say a child is throwing a toy that they shouldn’t be throwing. They may not be hurting anybody. They might be throwing it because they like the sound. It could be stimming [the term for a repetitive sound or motion an autistic person may use for emotional regulation or to express ]. It could be anything. The adult doesn’t want the child to play with the toy that way. 

They might try other interventions before planned ignoring, but then the child is being ignored completely, whether the child is trying to gain the attention of the behavior tech or not. This can cause increased 鈥渂ehaviors鈥� of the child escalating, trying to gain that attention. But no matter how much the child tries, the adult is not going to give in.

We can see how frustrating that must be, particularly if that’s a child who may be struggling with communication and may not say, 鈥楬ey, I really want to play ball right now.鈥� That kid is maybe unable to ask for what they want, or the way that they’re asking is a behavior that the behavior tech doesn’t like.

Is there a danger that as the state creates standards and licensing procedures to protect children, it will further codify this industry as the dominant treatment? 

Absolutely. ABA is currently the dominant treatment. They have lobbyists. They absolutely can persuade legislators to further empower the industry. Because they have the most money, they have the most power right now. 

A lot of the research about ABA, claiming it’s the gold standard treatment, etc., is funded by and conducted by the people who profit from it. We need to be sure that decision makers are looking at facts and data and information that isn’t that doesn鈥檛 involve a conflict of interest. It’s really important that we refer to outside, independent researchers, like the Department of Defense study.

There was a push at one point for board-certified behavior therapists [credentialed ABA supervisors] in Minnesota to be able to diagnose autism. They would then be able to enroll those children in their services. That is dangerous, because children who need a diagnosis need to go to an actual medical professional and have other conditions ruled out. They need to be evaluated for potential co-occurring conditions, etc. If a behavior therapist is able to diagnose autism, but they can’t diagnose anything else, then all of that child’s underlying conditions or additional conditions may be overlooked. 

If my children didn’t have full-team neuropsych evaluations, I wouldn’t know about their learning disabilities, and I wouldn’t know how to provide support. I wouldn’t know how to advocate for my children in school. My child used to be punished for his writing disability until we learned, through that neuropsych evaluation, there’s a dysgraphia issue. So let’s provide writing prompts. Let’s provide support for writing. Let’s provide adaptations and assistive technology. If he only had an autism diagnosis, that would have been met with behaviorism, he would have been rewarded for doing well, punished for struggling, and he wouldn’t have had access to the tools that he needs. 

There are definitely other treatments that don’t have that same level of influence but may be more effective, may be more humanizing. A lot of those are not as widely available. 

Many kids spend half or or all of their day in an ABA center rather than in a school where their learning would be attended to.

It’s a problem that begins in preschool. Children are often pushed out of public schools when a school or preschool doesn’t have the knowledge or resources to care for the child. They say, “Maybe this isn’t the best fit for you.” That’s something that my family has heard from our local public school. That’s not really a thing that a special education director should be saying to any family, and we should be concerned about the people who are most marginalized in our communities. When those kids are excluded from public schools, parents are often left with very few options. 

ABA centers market themselves as being able to help children to gain skills and become more independent. But if that were so, why isn’t inclusion in public schools the ultimate goal of ABA centers? ABA centers are not schools. They’re not accredited to provide education. There are very few ABA centers that have transition paths or goals for kids to move out of ABA and into mainstream schools. Instead, many children remain in ABA, sometimes throughout high school, deprived of the opportunity to learn what their peers are learning. It’s a form of educational neglect. 

Children in ABA often aren’t allowed to learn the most basic things. For example, [behavior therapists] often dissuade spelling to communicate, which means that they’re not encouraging autistic kids in ABA to even learn the alphabet. They aren’t taught literacy, they aren’t taught math, they aren’t taught history. That’s sad and scary, because then when these children grow up, all they’ve learned how to do is comply with authority.

There was a hearing a couple of days after yours where a number of East African parents testified about the conditions that compelled them to take advantage of ABA. There’s an element of desperation, in terms of a lack of alternatives, that must be clouding the picture.

It’s a sad reality that there’s a history here in Minnesota of people preying on immigrant communities. For example, in 2017 there were 75 cases of measles identified in the Somali population in Hennepin County alone, a result of anti-vaxxers who saw an opportunity to push their narrative that vaccines cause autism. They targeted immigrant communities with fearmongering tactics. 

The ABA industry pushes itself onto parents by claiming to be the only hope for their children. I’m very concerned that marketing targets immigrant communities without sharing balanced information that will help parents make informed decisions for their families. I’m worried about the conditions in which ABA is the only option. 

A lot of the time, parents are in a desperate situation where it’s like, 鈥淚 have to go to work to pay the bills, and I have to have a place for my child to be that is safe and supervised.鈥� And instead of lobbying for inclusion, for appropriate support and services in schools, we’re saying, 鈥淲ell, this kid can go to ABA instead.鈥� 

That’s not good for anyone, because inclusion benefits all of us. Inclusion benefits abled and typically developing people just as much as it benefits disabled people. I think we can see that right now in our current political climate, where it’s been so normalized to 鈥渙ther鈥� people. That causes harm to all of us. 

ABA is problematic in your culture.

I’m Anishinabe. ABA could never meet my needs as a Native person. “Culturally responsive” essentially means to adapt services to meet the needs and values of a person’s culture. Some cultures, particularly settler-colonial culture, values assimilation. Settler-colonial culture prefers when people blend in and are agreeable to authority. ABA is rooted in that.

Behaviorism seeks to control a person’s behavior with the carrots-and-sticks analogy. We reward the things we want to see, we punish the things that we don’t want to see. We all do get rewarded for doing certain actions, and we all could potentially be punished by other actions.

But it’s not the same micro-management of behavior 鈥� you can only communicate the way I want you to communicate. You can only experience your senses the way I want you to experience your senses. You can only socialize the way that I have determined is a valid way of being. 

There’s the stereotype that autistic people don’t make eye contact, but that eye contact is a cultural phenomenon. Not every culture thinks eye contact is this great thing. Some cultures find it disrespectful, but ABA doesn’t always take that into account. It’s determined by the [therapists], not necessarily the child and their family and their culture. 

We should all have some self-determination with how we use our bodies. If I’m not hurting anyone else, I should be able to stim. If I communicate best by writing, that should be encouraged, and I should be provided support and tools to do that. Rather than what happens often in ABA, where parents are told, “This will help your child speak,” but it’s not speech therapy. 

One of my children didn’t speak until he was a little bit older. Starting when he was about 2, he would use one or two words here and there, but he wouldn’t combine them. It was tough, because at the time, we didn’t have a diagnosis, we didn’t have any sort of speech language therapy. As a parent, I relied on very basic sign language. And I was thrilled because I could communicate with my kid whether he was using mouth words or not. Do I wish that we had speech language pathology at the time? Yes, absolutely, that would have been great. But we didn’t. I think that if we had pushed that particular child into using mouth words, I think it would have built resentment.

Now he can speak, but his preferred language now is music, which is really cool because he’s a musician. Music is a really strong cultural practice that’s traditional for Anishinaabe people or Ojibwe people. It’s healing for us, something that we love. Why don’t we encourage that, rather than the ABA ideal of mouth words?

When the first iteration of the law passed in 2006, it was known as the Combating Autism Act. As that name suggests, its aim was to fund research into causes and potential cures, with the goal of eradicating the syndrome. In the nearly two decades since, disability advocates have won more seats on the committee that oversees how the money is spent, which involves nearly two dozen federal agencies. Given a say in what is prioritized, they have secured to develop services to improve autistic people鈥檚 lives, such as faster diagnosis, better special education strategies, communication technologies and effective mental health treatment.

Still, just 13% of federal funds on autistic people鈥檚 well-being, versus 63% on investigations into biology, genetics and potential environmental influences 鈥� some of it presumably in service of wiping out what advocates argue is a naturally occurring neurotype.

In recent, heated Senate confirmation hearings, the potential secretary of health and human services waffled when grilled about his repeated, false statements asserting that vaccines cause autism. Though hundreds of studies worldwide have ruled out a link, Kennedy called for a fresh 鈥� and presumably costly 鈥� review.

The idea that Kennedy could attempt to divert federal funding away from autistic people鈥檚 long-sought priorities to instead revisit established science has been . Based on the offensive stereotypes Kennedy has used when talking about autistic people, say he will set back decades of progress if confirmed. 

鈥淸He thinks] it’s better to risk getting a deadly disease and your children dying than to be autistic,鈥� says Zoe Gross, the director of advocacy at the Autistic Self Advocacy Network. 鈥淭hat’s obviously a very stigmatizing and fearmongering way to talk about autism.鈥�

In 2015, she notes, Kennedy apologized for comparing autism, which he wrongly asserted destroys the brain, to a genocide caused by vaccines. 鈥淭hey get the shot, that night they have a fever of 103 [degrees], they go to sleep and three months later their brain is gone,鈥� he . 鈥淭his is a Holocaust, what this is doing to our country.鈥�

Advocates say Kennedy鈥檚 long history of talking about autism as something to be eradicated has alarming echoes of to 鈥渆uthanize鈥� autistic people, who were seen as a financial and genetic burden to society.  

鈥淭his attitude toward autism is kind of a canary in the coal mine situation,鈥� says Gross. 鈥淜ennedy鈥檚 beliefs about autism go hand in hand with some other really dangerous beliefs.鈥�

Advocates also argue that Kennedy has financial conflicts of interest. He has earned a reported $2.5 million in fees for referring potential clients to a law firm pursuing a claiming the human papillomavirus vaccine, Gardasil, is unsafe. 

Despite his family鈥檚 decades of staunch advocacy for improving the lives of people with disabilities, Kennedy believes autism was rare or nonexistent until 1989, often insisting that there were no profoundly autistic children when he was growing up and he does not know any autistic adults. 

鈥淚 have never in my life seen a man my age with full-blown autism, not once,鈥� Kennedy said in a 2023 . 鈥淲here are these men? One out of every 22 men who are walking around the mall with helmets on, who are non-toilet-trained, nonverbal, stimming, toe-walking, hand-flapping. I鈥檝e never seen it.鈥�

It鈥檚 generally accepted that much of the increase in positive diagnoses can be attributed to . Previously, children 鈥� and, in particular, girls 鈥� often went undiagnosed if their autistic traits were subtle. If the symptoms were more profound, the children were categorized as schizophrenic or having a developmental disorder instead. As a result, the number of kids with an autism diagnosis has risen from 1 in 150 in 2000 to 1 in 36 today. 

Public schools are bound by the Individuals with Disabilities in Education Act and portions of the Americans with Disabilities Act to provide a broad array of services to people with disabilities from birth to their 22^nd birthday. Because of this, the CARES Act requires the Department of Health and Human Services to work in concert with the Education and Agriculture departments.

The CARES Act does not fund special education per se, but pays for research on effective instruction; technology to enable the 25% to 30% of autistic people who are nonverbal or minimally speaking to communicate; and to identify strategies to help autistic people who age out of special education find new services and ideally achieve independence, among other things. 

In some places, the funds defray the cost of evaluating children as quickly as possible so they can get crucial early interventions, notes David Rivera, the president and founder of a California nonprofit, . 

鈥淭he program has helped fund, in a single year, more than 100,000 people receiving diagnoses 鈥� or ruling them out,鈥� says Rivera, who is autistic. 鈥淒iagnosis allows access to services.鈥� 

The latest version of the law requires the development of a strategy to address a desperate shortage of developmental-behavioral pediatricians, the providers most qualified to diagnose autism and assess children鈥檚 needs. Throughout the country, there are , leaving families who are unable to have their children assessed through a school system to wait as long as two years or more for private evaluations.

Last year, Rivera lobbied for the law鈥檚 renewal, crediting it for 鈥溾�� undergirding effective strategies that helped him go from failing classes in elementary and middle school to gaining admission to the University of California, Berkeley, where he is a political science major.

Diverting federal funding from efforts like those that have made him successful is 鈥渢he equivalent of throwing money into a fire,鈥� Rivera says.

The 2024 version of the law is the fifth. Each time Congress has rewritten it, autistic people and advocacy organizations have lobbied to to include funding for research and programs intended to improve autists鈥� lives. 

As the public鈥檚 understanding of how many people are autistic 鈥� and how their autism manifests 鈥� changed, the law has been revised to require leaders of a host of federal agencies, such as departments of justice, labor, veterans affairs and housing and urban development, to participate on the on the Interagency Autism Coordinating Committee, which oversees how the money is spent. 

Advocates have also fought to increase the number of committee seats reserved for members of the public who are autistic, parents and . The panel currently has a nonverbal member and one with an intellectual disability in addition to autism. New and returning members are appointed after each reauthorization. 

Health and Human Services officials did not respond to a request from 社区黑料 for comment, but as of press time, said the agency would solicit new public members in early 2025. 

Right now, there are more caregivers and autistic members than are required by law, says Gross. 

鈥淐ertainly they could go down to the bare minimum,鈥� she says. 鈥淎nd I think it would be difficult to find self-advocates who have those same beliefs that vaccines cause autism, [but] I’m not going to say it’s impossible.鈥�

This argument misses a critical point: These policies provide families with new opportunities while taking no existing options away.

The commentary by Lauren Morando Rhim at the Center for Learning Equity expresses concerns that private schools are not bound by the same rules, regulations, and processes as public schools. But that鈥檚 precisely the point of alternatives. As Rhim herself noted in a previous , 鈥淭he system can be very large and rigid,鈥� often leaving students with disabilities marginalized by a one-size-fits-all approach. 

I鈥檓 hard pressed to find more compelling reasons to support giving families more options.

Public schools work well for many students with disabilities. But for families seeking something different, what鈥檚 the harm in allowing them to use their funds to choose a private alternative they believe will better serve their child? 

Public schools are governed by laws like the Individuals with Disabilities Education Act (IDEA), which was enacted at a time when with disabilities were denied access to public schools. However, IDEA鈥檚 aspirational goals have not always translated into effective implementation across the nation鈥檚 13,000-plus school districts. Many families face endless battles for evaluations, services, and compliance. For every success story, there are countless examples of parents left frustrated by the system.

It鈥檚 tedious that I must point this out, because there are just as many stories of parents satisfied with what their public school offers their child. But the world doesn鈥檛 run on generalities鈥攊t runs on the lived experiences of individuals. Some schools do better than others, and some adults do better than others. 

Florida passed the first statewide voucher program in 1999 specifically for students with disabilities. Today, over 90,000 students in Florida benefit from these programs, which cover tuition, therapies, tutoring, and other expenses.

Research supports their effectiveness. A from Boston University and the University of Arkansas found 93% satisfaction rates among families participating in Florida鈥檚 Gardiner Scholarship Program, an education savings account specifically for students with disabilities, compared to 85% satisfaction among families who are not participating. (The program is now part of the state鈥檚 newer Family Empowerment Scholarships for Students with Unique Abilities program.)

Participating parents reported significantly higher satisfaction rates in terms of the services and accommodations their private school provided compared to parents in public schools. These families valued the ability to choose schools and services that met their children鈥檚 specific needs鈥攆reedom that is often unavailable in public systems.

Unlike public schools, private school programs don鈥檛 necessarily have public meeting requirements, standardized test score reporting and federal disability law protections. Yet parents in these programs overwhelmingly report higher satisfaction. Why? These programs give families a right they don鈥檛 have elsewhere: the ability to control their educational funds and choose what works best for their child. 

One parent in the Florida study put it best, saying the option 鈥渙pened up a whole avenue of feeling like I didn鈥檛 have to have him stay in a setting that I felt like he wasn鈥檛 going to be successful in. And without it, I don鈥檛 think he鈥檇 be where he is today.鈥�

I won鈥檛 pretend every program is perfect. Bureaucratic red tape can make them harder to navigate, and experiences vary. But expanding options that outperform the status quo in parent satisfaction does not harm families of students with disabilities 鈥� it helps them. 

I have a son with autism. I鈥檓 motivated to find him a school where he鈥檚 welcomed, supported, understood, and loved. I want him to grow academically, socially, and cognitively. I hope he鈥檒l make friends and be able to share highlights of his day. These basic human needs are obvious to any parent, yet they鈥檙e rarely mentioned in debates about regulations and government processes. 

With over 55 million schoolchildren in the United States, why dismiss choice and alternatives because they are not bound by a federal regulatory apparatus? That is often the very reason parents seek alternatives. Expanding options empowers families to find solutions that work for them鈥攕olutions that no one can dictate better than a parent.

Adam Peshek is senior director and senior fellow of Stand Together Trust.

Disclosure: Stand Together Trust provides financial support to 社区黑料.

One thing is clear from the stories that populate this year鈥檚 list: Many of America鈥檚 schools are still grappling with the academic struggles that followed the pandemic 鈥� as well as the end of federal relief funds, which expired this fall. Student enrollments have yet to recover and many districts are facing 鈥� or will soon face 鈥� tough decisions about closures.

Meanwhile, some educators are testing innovative ways of teaching math, reading and science, hoping to gain back some of the academic ground lost since the COVID shutdowns. Technology is also playing a pivotal role in this post-pandemic world, with communities weighing the impact of cellphones and artificial intelligence on student learning and mental health.

November鈥檚 election 鈥� which featured debates over school choice, Christianity in public schools and the fate of the Department of Education 鈥� also made headlines here at 社区黑料. And, as calls for cracking down on immigration grew even louder, we dug deep into the hurdles facing immigrant students and schools. 

Here鈥檚 a roundup of our most memorable and impactful stories of the year:

Exclusive: Thousands of Schools at Risk of Closing Due to Enrollment Loss

By Linda Jacobson

Long before districts close schools, enrollment loss takes a toll on staff and families, from combined classes to the loss of afterschool programs. This exclusive analysis by Linda Jacobson, based on Brookings Institution research, found that more than 4,400 schools lost at least one-fifth of their students during the pandemic 鈥� more than double the number during the pre-COVID period. The detailed look shows how the crisis is playing out at the school level and which districts face tough decisions about closures and cuts. 

Unwelcome to America鈥�: Hundreds of U.S. High Schools Wrongfully Refused Entry to Older, Immigrant Student

By Jo Napolitano

社区黑料鈥檚 16-month-long undercover investigation of school enrollment practices for older immigrant students revealed rampant refusals of teens who had a legal right to attend, shutting a door critical to success in America. Senior reporter Jo Napolitano called 630 high schools in every state and D.C. to test whether they would enroll a 19-year-old Venezuelan newcomer who had limited English language skills and whose education was interrupted after ninth grade. 鈥淗ector Guerrero鈥� was turned down more than 300 times, including 204 denials in the 35 states and D.C., where high school attendance goes up to at least age 20. 社区黑料鈥檚 investigation revealed pervasive hostility and suspicion toward these students in a particularly xenophobic era and a deeply arbitrary process determining their access to K-12 education.

Interactive: Which School Districts Do the Best Job of Teaching Kids to Read?

By Chad Aldeman

It’s not news that low-income fourth graders are years behind their higher-income peers in reading. But poverty is not destiny, and some schools and districts hugely outperform expectations. Working with Eamonn Fitzmaurice, 社区黑料鈥檚 art and technology director, contributor Chad Aldeman set out to find districts that are beating the odds and successfully teaching kids to read. From Steubenville City, Ohio, to Worcester County, Maryland, and across the country, click on their interactive map to find the highfliers in your state. 

Whistleblower: L.A. Schools鈥� Chatbot Misused Student Data as Tech Company Crumbled

by Mark Keierleber

In early June, a former top software engineer at ed tech startup, AllHere, warned Los Angeles district officials and others about student data privacy risks associated with the company鈥檚 AI chatbot “Ed.” The LA Unified School District had agreed to pay AllHere $6 million for the chatbot and the spring rollout of Ed was highly publicized, with L.A. schools chief Alberto Carvalho calling the chatbot鈥檚 student knowledge powers 鈥渦nprecedented in American public education.鈥� But, as Mark Keierleber reported, red flags soon began to emerge. The company financially imploded and its founder Joanna Smith-Griffin left the company. In November, federal prosecutors indicted her, accusing of defrauding investors of $10 million.

America’s Most Popular Autism Therapy May Not Work 鈥� and May Cause Serious Harms

by Beth Hawkins

Today, a child鈥檚 new autism diagnosis is frequently followed by a referral to a variation of an intervention called applied behavior analysis, or ABA, and four decades of pressure from parents and advocates has created a sprawling treatment industry. Yet, even as providers and lobbyists jockey to strengthen ABA’s dominance, autistic adults and researchers increasingly say there鈥檚 alarmingly little proof it鈥檚 effective 鈥� and mounting evidence it鈥檚 traumatizing. In an exclusive investigation, Beth Hawkins spoke with families, teachers and scholars about the growing controversy surrounding autism鈥檚 鈥済old standard鈥� treatment. 

A Cautionary AI Tale: Why IBM鈥檚 Dazzling Watson Supercomputer Made a Lousy Tutor

by Greg Toppo

In 2011, IBM’s Watson supercomputer crushed Jeopardy! champions, raising hopes that it could help create a powerful tutoring system that would rival human teachers. But the visionary at the head of the effort watched as the project fizzled, the victim of AI’s inability to hold students鈥� attention. As new educational AI contenders like Khanmigo emerge, what lessons can they learn from the past? 社区黑料鈥檚 Greg Toppo took a look at how IBM鈥檚 failed effort tempers today鈥檚 shiny AI promises.

State-by-State, How Segregation Legally Continues 7 Decades Post Brown v. Board

by Marianna McMurdock

Seventy years after the Supreme Court outlawed separating public school children by race, Marianna McMurdock sought to answer a pivotal question: How are some of the most coveted public schools in the U.S. able to legally exclude all but the most privileged families? Last spring, she spoke with researchers at the nonprofits Available to All and Bellwether, which published a report that examined the troubling laws, loopholes and trends that are undermining the legacy of Brown v. Board in each state. The researchers called for urgent legal reform to offset the impact that one鈥檚 home address has on enrollment, particularly as many districts have started considering closures.

Being 鈥楤ad at Math鈥� Is a Pervasive Concept. Can it Be Banished From Schools?

by Jo Napolitano

Are you bad at math? If you are, it鈥檚 likely that self-fulfilling seed got planted early. Many math education leaders are trying to uproot that thinking, arguing that any student can master the subject with the right accommodations and tutoring. Changing the bad-at-math mindset in U.S. schools, however, will not be easy, others warn. 鈥淲e use math as a means to sort kids by who gets to be at the top and who gets to be at the bottom,鈥� one math equity advocate told Jo Napolitano. 

Hope Rises in Pine Bluff: Saving Schools in America’s Fastest-Shrinking City

by 社区黑料 Staff

Pine Bluff, Arkansas, earned the unwelcome distinction in the 2020 census of being America’s fastest-shrinking city, losing over 12% of its population in one decade. Amid this exodus of families, students and taxpayers, its school district had to navigate school closures, budget pressures and a state takeover. Throughout last winter, members of 社区黑料鈥檚 newsroom embedded in Pine Bluff to report on the region鈥檚 trajectory. Here are some of the powerful stories they came back with: 

Kids, Screen Time & Despair: An Expert in the Economics of Happiness Echoes Psychologists鈥� Warnings About Tech

By Kevin Mahnken

A prominent economist has joined the growing chorus of experts warning against the dangers posed to youth mental health by screens and social media, reported Kevin Mahnken. New papers released by Dartmouth College professor Danny Blanchflower, a leading expert in the burgeoning field of happiness economics, suggest that the huge increase in screen time over the last decade has made the young more likely to despair than the middle-aged. 

Why Is a Grading System Touted as More Accurate, Equitable So Hard to Implement?

By Amanda Geduld

As educators push for more transparency in grading policies post-pandemic, some are turning to standards-based grading. When done correctly, it separates academic mastery from behavior and more accurately reflects what students know. But misunderstandings of the model, a lack of proper training, and a rush to adopt it often leads to messy implementation. Associate professor Laura Link told Amanda Geduld that as schools look to fix learning gaps, 鈥渟tandards-based grading is one that seems like it can be a quickly adopted effort. But it could backfire 鈥� and does backfire 鈥� very easily.鈥�

Texas Seeks to Inject Bible Stories into Elementary School Reading Program

by Linda Jacobson

Last May, a sweeping redesign of Texas鈥� elementary school curriculum that used Bible stories to teach reading was unveiled. At the time, state education Commissioner Mike Morath described the changes as a shift toward a 鈥渃lassical model of education.鈥� But the revisions raised questions about potential religious indoctrination and bias. Nevertheless, in November, the Texas Board of Education approved the new curriculum in a close vote. Linda Jacobson followed the story closely.

The Political War Over the Department of Education Is Only Beginning

By Kevin Mahnken 

Fresh from their November victories, Republicans are already working to help President-elect Donald Trump achieve his promise of abolishing the U.S. Department of Education. But research suggests that, while perceptions of the agency are mixed, the public is unlikely to back a sweeping course of elimination. 鈥淪aying you鈥檒l get rid of it reads generically as being anti-education,鈥� one political scientist told Kevin Mahnken. 鈥淭hat strikes me as a very heavy albatross to hang around your neck come the midterms.” 

18 Years, $2 Billion: Inside New Orleans’ Biggest School Recovery Effort in History

By Beth Hawkins

In 2005, Hurricane Katrina destroyed 110 New Orleans schools. Displaced families could not return until there were classrooms to welcome their kids, but no one had ever tried to rebuild an entire school system. While many of the buildings were moldering even before the storm, federal funds couldn’t be used to build something better. Some of the schools had landmark status and were of great historical significance. Eighteen years and $2 billion later, Beth Hawkins took a look at seven schools that illustrate how the district accomplished the task.

As Ryan Walters鈥� Right-Wing Star Rose, Critics Say Oklahoma Ed Dept. Fell Apart

By Linda Jacobson

Oklahoma state education chief Republican Ryan Walters has acted as a one-man publicity machine, a performance that鈥檚 earned him venomous foes and ardent fans who follow him with a near-religious fervor. But one casualty of his approach might be a functioning state education bureaucracy. Even Republican lawmakers have grown impatient, calling for a probe into how Walters handles state and federal funds. As Rep. Tammy West, a GOP incumbent running for re-election, told reporter Linda Jacobson, 鈥淩egardless of party, citizens want transparency, accountability and communication.鈥�

AI 鈥楥ompanions鈥� Are Patient, Funny, Upbeat 鈥� and Probably Rewiring Kids Brains

By Greg Toppo

A college student relies on ChatGPT to help him make life decisions, including whether to break up with his girlfriend. Is this a future we feel good about? While AI bots and companions like ChatGPT, Replika and Snapchat鈥檚 MyAI, can offer support, comfort and advice, experts are beginning to warn of potential risks. 社区黑料鈥檚 Greg Toppo talks to researchers and policy experts about what we should be doing to help make them safer.

Indiana Looks to Swiss Experts to Create Thousands of Student Apprenticeships

By Patrick O鈥橠onnell

Indiana officials have turned to experts at the Swiss version of MIT for help in becoming a national career training leader by making apprenticeships available to thousands of high school students across the state. Indiana is the latest state to work with ETH Zurich 鈥� where Albert Einstein once studied 鈥� to develop ways to break down barriers between educators and businesses so that career training can be a large part of a reinvented high school experience, reported Patrick O鈥橠onnell. 

Investigation: Nearly 1,000 Native Children Died in Federal Boarding Schools

By Marianna McMurdock 

Nearly 1,000 Native American children died while forced to attend government-affiliated boarding schools, according to a report published last summer by the Interior Department. The children are buried in 74 unmarked and marked graves, reported Marianna McMurdock, as tribes assess repatriation of remains. Nearly 19,000 children were estimated to be kidnapped, often at gunpoint, and enrolled in the schools with the aim of assimilation. “We [were] never called by our name, we were all called by our numbers,鈥� said one survivor. 

The Nation鈥檚 Biggest Charter School System Is Under Fire in Los Angeles

By Ben Chapman 

The nation鈥檚 largest experiment with charter schools is no longer growing. These days, Los Angeles charter operators say they are just trying to survive. With tough new policies governing co-locations, falling enrollment, and a hostile district school board, charter leaders say they鈥檝e never faced stronger headwinds, reported Ben Chapman. With enrollment plummeting across the district, some charter networks have recently announced closures while others have stopped submitting proposals for new campuses. 鈥淣ow, particularly in L.A., our focus is not on growing,鈥� said Joanna Belcher, chief impact officer for KIPP SoCal. 

Florida Students Seize on Parental Rights to Stop Educators from Hitting Kids

By Mark Keierleber 

Late last year, Florida senior Brooklynn Daniels was called to the principal鈥檚 office and spanked with a wooden paddle 鈥渢hat was thick like a chapter book.鈥� Like in many enclaves that dot the Florida panhandle, Liberty County permits corporal punishment as a form of student discipline. But her flogging, the honors student said, went much further: She alleged sexual assault and filed a police report, reported Mark Keierleber. Daniels joined a student-led movement to change Florida law that has latched onto the GOP-led parental rights movement. 

Interactive: See How Student Achievement Gaps Are Growing in Your State

By Chad Aldeman

In 2012, then-President Barack Obama freed states from the accountability provisions of No Child Left Behind in exchange for reforms related to standards, assessments and teacher evaluations. That relaxing of school and district accountability pressures corresponded with a decline in student performance across the country that is still being felt 鈥� achievement gaps are growing across subjects and all across the country. To illustrate these alarming discrepancies, contributor Chad Aldeman and Eamonn Fitzmaurice, 社区黑料鈥檚 art and technology director, created an interactive tool that enables you to see what’s happening with student performance in your state.

Left Powerless: Non-English鈥揝peaking Parents Denied Vital Translation Services

by Amanda Geduld

Flouting federal laws, K-12 public schools routinely fail to provide qualified interpreters to non-English-speaking families. Parents must instead rely on Google translate, their own kid or a bilingual staff member who isn鈥檛 a trained interpreter for issues as simple as their child鈥檚 absence for a day or as complex and intimidating as a special education meeting or a school disciplinary hearing. The problem is pervasive and vastly underreported, experts told Amanda Geduld. School leaders say they are trying their best, but lack the money and staffing to meet the need. 

Failed West Virginia Microschool Fuels State Probe and Some Soul-Searching

By Linda Jacobson

The West Virginia treasurer鈥檚 investigation into a microschool, funded with education savings accounts, offers a glimpse into an emerging market that has mushroomed since the pandemic. When the program shut down after a few months, parents were left demanding their money back and scrambling to find other arrangements for their children. The example, experts say, shows that it takes more than good intentions to provide a quality education program. As one parent told Linda Jacobson, 鈥淚 should have seen the red flags.鈥�

In the Rush to Covid Recovery, Did We Forget About Our Youngest Learners?

by Lauren Camera

The country鈥檚 youngest elementary school students suffered steep academic setbacks in the wake of the COVID-19 pandemic 鈥� just like students in older grades. But new research shows that they aren鈥檛 catching back up to pre-pandemic levels in reading and math the way older students are. And when it comes to math, many are falling even further behind. 鈥淲e were shocked when we first saw the data,鈥� Kristen Huff, vice president of assessment and research at Curriculum Associates, told Lauren Camera.

An autistic PhD candidate in computer science, Naba Rizvi is the lead author of published between 2016 and 2022 that focused on robots鈥� interactions with autistic people. She and her colleagues found that almost all of the research excludes the perspectives of the autistic subjects, pathologizes them by using an outdated understanding of the neurotype, and contains little, if any, evidence that therapies delivered by robots are effective. 

More than 93% of the studies start with the now-controversial stance that autism is a condition that can and should be cured. Nearly all test the use of robots to diagnose the condition or to teach autistic children to interact in ways that make them seem more neurotypical, such as making eye contact.

While most research on human-robot interaction starts by asking the subjects what their needs are, nearly 90% of the researchers in Rizvi鈥檚 sample did not ask autistic people whether they want the technology. Fewer than 3% included autistic people in framing the theory being investigated, and just 5% incorporated their perspectives in designing research. 

鈥淓ven clinicians are not convinced of their effectiveness, and minimal progress has been made in making such robots clinically useful,鈥� Rizvi writes. 鈥淚n fact, research even suggests that this use of robots may be counterproductive and negatively impact the skills they are designed to hone in autistic end-users.鈥�

Proponents reason that robots can not only deliver behavior therapy more cheaply but will appeal more to children than human therapists. Investors forecast the technology could become the centerpiece of a market that may soon be worth . Not yet common in special education classrooms, robots programmed to intervene with autistic children are being marketed to schools and even families.

Some of the early research the robotics industry has recently relied on in designing its experiments described autistic children as less human than chimpanzees, Rizvi adds: 鈥淭hese systems promote the idea that autistic people are 鈥榙eficient鈥� in their humanness, and that robots can teach them how to be more human-like. This echoes foundational work that has questioned the humanity of autistic people, and proposed non-human entities such as animals may be more human than them.鈥� 

Most of the research the team reviewed was published in robotics journals, not autism reviews. Seventy-six of the studies used anthropomorphic or humanoid robots to teach social skills, while 15 relied on devices designed to look like animals. One used a robot to diagnose 鈥渁bnormal鈥� social interactions.

Researchers leaned on harmful tropes that describe autistic people as robot-like 鈥� and robots as intrinsically autistic. Many of the papers reviewed also accept an old and controversial premise that autistic people are not motivated to interact socially with others. Less than 10% included representative samples of girls, whose autistic 鈥渂ehaviors鈥� are more likely to show up as depression and other mental health conditions. 

The report comes as a rift is widening between proponents of using behavioral therapy and autistic adults who say the intervention, commonly called applied behavior analysis, is inhumane. A growing body of research suggests that efforts to train autistic children to act and appear more like their neurotypical, or non-autistic, peers are ineffective and often traumatizing. 

In applied behavior analysis, a therapist uses positive and negative reinforcement to attempt to 鈥渆xtinguish鈥� mannerisms perceived as undesirable and to replace them with behaviors considered 鈥渘ormal.鈥� Therapists work one-on-one with a child, often 10 to40 hours a week. It is repetitive and expensive.

Many autistic adults who have undergone the therapy note that some of the mannerisms it attempts to eliminate, such as hand-flapping or rocking, are harmless ways to compensate for overstimulation or to express positive emotions. Nonetheless, the therapy is widely considered the 鈥済old standard鈥� of autism interventions. 

Rizvi says she鈥檚 dismayed but not surprised by the push to develop automated therapists. The use of robotics in medicine is exploding, and almost all of the researchers in her sample framed their work using what advocates call the 鈥渕edical model鈥� of disability. Historically, disabilities have been seen as medically diagnosable deficits to be treated or cured. 

Over the past couple of decades, however, people with disabilities have increasingly pushed for the adoption of a 鈥渟ocial model,鈥� which holds that a lack of inclusion in all realms of public life is the central issue. Autistic adults have advocated for better representation in research, so that more studies are geared toward making education, employment, housing and other sectors of society more accommodating.

Just 6% of the papers Rizvi and her colleagues reviewed start from a social model. This is problematic, they say, because many autistic people have needs that can be addressed by improved technology. Non-verbal students, for example, benefit from evolving 鈥渁ugmentative and assistive communication鈥� 鈥� devices families often struggle to get schools to provide. 

Rizvi鈥檚 main research focus is on the development of ethical artificial intelligence. Because the datasets AI is 鈥渢rained鈥� on , so are the resulting algorithms, she explains. Research has shown, for example, that resumes that mention jobs in disability agencies or support capacities are automatically scored lower by AI than those that don鈥檛.

Another example is AI-enabled online content moderation. Social media posts and comments that mention disability-related topics are often rejected as toxic, Rizvi says. 

鈥淲hen it comes to content moderation the data sets don’t always represent the perspectives of the communities,鈥� she says. 鈥淎nd they do this thing where, say, if you have three people trying to agree on whether or not a sentence is ableist, the automatic assumption is that the majority vote is the right one.鈥�

鈥淎re Robots Ready to Deliver Autism Inclusion? A Critical Review鈥� was presented at a recent . The presentation includes suggestions for ensuring research is inclusive and avoids harmful stereotypes and historical misrepresentations, which are on Rizvi鈥檚 own website. 

Recommended but not mandatory at first, the professional development will be created and provided by people with disabilities. Backers believe the law will be the first in the country to empower people who experience ableism to educate teachers about it.

was the brainchild of a group of people with disabilities, along with parents and advocates. After comparing experiences, they realized how often they encountered ableism in schools 鈥� even in classrooms supposedly designed for them. An organization founded by parents 鈥� many of them immigrants 鈥� called the Multicultural Autism Action Network spearheaded the effort to add disability awareness to teachers鈥� continuing education. The proposal is poised to be among the final measures passed into law before the legislature adjourns May 20. 

A key lobbyist in the effort is Jillian Nelson, community resource and policy advocate at the Autism Society of Minnesota. Recently, she talked to 社区黑料鈥檚 Beth Hawkins about the bill, being diagnosed with autism, her own experiences with ableism in school and the job she says was created just for her. 

This interview has been edited for length and clarity.

Not too long ago, the very idea of an autistic lobbyist was hard to fathom. How did you end up breaking that barrier?

I have really struggled getting by in life as an autistic person. I had a hard time in employment before I landed here, struggling with different things like relationships and getting the accommodations necessary throughout school and college. The Autism Society of Minnesota has given me the backing to do work I only ever dreamed of. Our amazing leadership team saw my strengths and created a role where I could utilize those in the best way for our community.

I run our information resource hotline. When people are going through challenges or newly diagnosed, I provide insight and help them navigate a world that’s fairly complex. I also do all our resource fair outreach work, which means I get to go out and connect with people.

And then all those conversations, I put them in my pocket and I head up to Capitol Hill, where I work with other organizations to advance disability law and create a great and equitable place here in Minnesota for people with disabilities to not just live and survive, but to thrive and have the same opportunities as everyone else. 

It also really matters to be working in a place where every single person around me is either autistic or understands autism. I can show up to work as myself without having to mask or play games that I don’t understand. 

Can you explain the term 鈥渕ask鈥�?

Masking is an emotionally exhausting process of pretending or portraying yourself as neurotypical or just like everyone else. People who mask go to great lengths to appear to have no disability or struggle and to just fit in. But when things don’t come naturally 鈥� like following every single social cue 鈥� it’s incredibly tedious to pick and choose what to say and do at every step of the way. Sometimes you get it right and sometimes you don’t. 

This year, you and your colleagues seem to have gotten a lot right. In less than two months you shepherded a bill addressing issues many people aren鈥檛 even aware of through a complicated legislative process where good ideas often go to die. 

This was born out of an opportunity a couple of years ago to bring together people with different types of disabilities to talk to the Minnesota Department of Education about their experience as special education students. One of the topics that came up was ableism and the not-so-great experiences they had surrounding that. 

The response this group received was so warm! But also, it was devastating that so many teachers came up afterward and said, 鈥淣o one’s ever talked to us about ableism. No one’s ever given us this information. I wish I had known so I could have done better.鈥� 

Children with disabilities, we’re turning them over to a system that doesn’t often recognize their existence as part of a broader culture. There might be bullying or assumptions that a student can’t do something. That presumed incompetence 鈥� we don’t give students with disabilities a chance to fail. We keep them in this bubble because we think they can’t succeed because of their disability. 

We want the youngest members of our culture to grow up with less trauma, with this sense of belief that they can do things that people in the past may have told them they weren’t capable of because of their disability. 

I think it’s going to surprise people that educators 鈥� especially special educators 鈥� aren鈥檛 routinely exposed to this information. 

One of the big disconnects is that disability in our education system is seen as a medical condition or a qualifying condition. When we teach about disability, we teach out of medical criteria. A lot of teachers are very familiar with the criteria for different disabilities. They know the laws they’re required to follow in special education. But everything is taught in theories: Here’s a special education learning theory about social-emotional learning, about social skills learning. We teach a lot on how to teach but not how to understand. 

The disability culture is the only group where we currently allow teachers to teach in a classroom that is filled entirely with children from this culture and have absolutely no cultural competency training or requirements. That鈥檚 what the ableism and disability justice bill is really about. It’s about creating cultural competency among teachers who are working with children from this really unique and beautiful culture. 

Disability as a culture is a relatively new concept. You have described deaf culture as a model: In 1988, students at Gallaudet University staged what鈥檚 known as the Deaf President Now protest, demanding that the school鈥檚 next leader be deaf. It seems ridiculous today that a hearing person would be seen as more capable of leading such an institution than any of the people it serves. Yet it was an 鈥渁ha鈥� moment when teachers heard from former special education students. 

It鈥檚 been a slow shift. As our society has shifted toward inclusion, and with the development of social media and technology, people with disabilities from all over the world have been able to connect and identify with one another. We realized that experiences we were having, the things that felt so isolating or challenging in our lives, that we weren’t alone in those experiences.

We stopped being individuals that this was happening to. We started to be a culture of individuals with shared experiences. People with disabilities started asking for what they needed to live full and impactful lives. 

It鈥檚 a tall order to help someone whose professional identity is tied up in seeing themselves as a student鈥檚 best advocate to see that they鈥檙e engaging in ableism. 

In high school, I wasn’t diagnosed with autism. I was a special education student, but for emotional behavioral disorder. My special education transition plan was that I would get a job in customer service or food service, because that’s what they believed I was capable of. Despite the fact that even my special education testing showed I was in the 99th percentile IQ-wise.

I graduated without ever taking the SATs or applying to a single college because the people that were in charge of helping me plan my future as a young person with disabilities never saw that as a possibility. That idea that they knew best and they were protecting me from potential failure was the thing that led to my biggest downfall. By the time I was 20 years old, I was a homeless drug addict. I didn’t see any path for my future or have a whole lot of hope. 

After I got diagnosed, I had a case manager who forced me to go to college. It changed everything. Finally, someone believed in me. She was willing to put me in a position to succeed 鈥� while knowing that there was a risk of failure. Instead of saying, 鈥淵ou can’t do this because of your disability,鈥� she asked me, 鈥淗ow can we do this with your disabilities?鈥�

I don’t believe that our education system, our teachers, set out to set students with disabilities up for failure or limit us to a small window of potential. But we don’t know what we don’t know, and when we know better, we do better. That’s really the core. We’ve never given teachers this information or an understanding of this unique and amazing culture. If we can do that, we can inspire them not to try to save us from ourselves, but to help us be the best version of ourselves.

What hurdles to the bill鈥檚 introduction did you anticipate? And what did you actually find? 

I anticipated what we did actually find: teaching lawmakers what ableism is and convincing them why it matters. There were some that jumped right on board. Our chief author in the House of Representatives, Rep. Kim Hicks, has been an amazing champion. She herself is a legislator with a disability and she has children with a disability. 

On the Senate side, though, we faced a number of hurdles. We went to Sen. Mary Kunesh looking for some suggestions, not necessarily expecting her to take it on. I started telling her my story and how ableism had held me back for so many years, and how I often wonder what I would have achieved if they had believed in me in high school. 

She asked me where I went to school. It was the school district where she taught. She looked at us and said, 鈥淒o you have the jacket with you? I鈥檒l introduce the bill.鈥� When you realize that this isn’t just happening somewhere else, it’s happening at the place that you teach, that hits home. 

We had to make it very real for people. Not just a theory or an idea, but these are the experiences happening to children now. This is something that has been a generational problem for decades. 

If you received special education services for the wrong diagnosis, you probably experienced a particularly pernicious form of ableism. I鈥檓 guessing your behavior, whatever it was, should have been a red flag for a sensory issue. 

Social anxiety, 100%. I went to school, but I didn’t go to most of my classes for my freshman and sophomore years because I was so socially anxious. But I wasn’t the kid smoking behind the dumpster. I was hanging out in the library researching my special interest [an autism culture term for a topic a person enjoys learning about in great depth], or hiding in the art room working on extra credit projects.  

My experience and the services and support I received were a gigantic red flag of ableism. They assumed the things that were holding me back were a choice, versus something I had no control over. I didn’t end up in special education until my sophomore year of high school 鈥� well after Asperger’s syndrome was in the DSM (the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders). But we weren’t looking at individuals like myself and saying, 鈥淭his might be autism.鈥� We just assumed that the problem was not that I couldn’t do the things that they were asking me to, it was that I didn’t want to.

I have come to terms with being a later-diagnosed person with autism. But I think about how many things I missed out on. I graduated with a seventh-grade math level. I did special education civic engagement because they didn’t think I could handle the mainstream classroom with my classmates. Funny that I grew up to be a lobbyist. 

I wonder a lot, though, who I could have been if they figured out how to support me to my full potential, rather than to just manage what they thought of as behaviors. I wonder about all the opportunities that were taken from me because I just became a statistic. I think about a lot of the trauma that I endured as a teenager, being educated in classrooms with individuals that had very unmanaged, far more aggressive behaviors than me. 

So the hope is somebody who takes the training would look at a student who hid in the library and see massive evidence of engagement, and wonder, 鈥淲hy is the student engaging there, instead of the social studies classroom?鈥� 

I had teachers later on that did see that, and that’s where I got to thrive. When I was a senior retaking my sophomore English class 鈥� because I missed it, you know 鈥� my teacher asked me, “Why are you in my class?” I’m like, “Well, I’m here because the state of Minnesota says I need to be here.”

He turned my sophomore English credit into an independent study. The one assignment I had was to write a college-level paper. He said, 鈥淚’m not going to teach you how. If you need help, you’re going to have to ask.鈥� He saw my talents, and he also saw what I actually needed to learn in that class: how to ask for help, how to work independently, how to plan my time. It prepared me for college more than writing a 10th-grade research paper ever would. 

I don’t want those teachers to be needles in a haystack, where there’s one or two. I want every teacher to look at a kid with disabilities with curiosity and ask, “How can we help them succeed?”

How do you introduce people to the idea that there’s joy and pride in a disabled person鈥檚 identity 鈥� things you would never want to change about yourself? 

One of the biggest things that I hope teachers take away from training about ableism is that we’re okay just the way we are. Feeling shame about disabilities? That’s not ingrained in us from birth. That’s something that we learn from the interactions we have with the world around us. I hope that as teachers embrace anti-ableism, instead of seeing us as a collection of deficits that need to be measured and tracked, they see the beautiful parts of our existence.

One of my greatest gratitudes about being autistic is the level of joy I get to experience in my special interest, in sensory things, in being able to see the world in such a beautiful, unique way that not everyone does. I hope that through this training, we can teach teachers to see that in their students, and we give students the opportunities to grow and learn to love themselves and find things to be proud of about their disabilities, versus just trying to make them conform to the expectations of a non-disabled society.

I got lucky when I landed at the Autism Society. But at the end of the day, I also recognize that all the things that make me so good at my job are because I’m autistic. I want future generations of kiddos with disabilities to grow up finding that pride and that joy in who they are.

About a quarter of Washington鈥檚 students with disabilities don鈥檛 find employment or enroll in higher education within a year of leaving high school.

Outcomes are even worse for students with autism or intellectual disabilities: 54% of graduates with intellectual disabilities are not engaging in employment or higher education within a year, and 41% of those with autism fall into the same category.

The data comes from a from the state Office of the Superintendent of Public Instruction, which analyzes information collected in 2022 from students receiving special education services who left high school in the 2020-2021 school year.

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Joshua Taylor, a professor at Washington State University who studies transitions from school to employment for students with intellectual and developmental disabilities, said the reported outcomes for those students are 鈥渞eally troubling.鈥�

鈥淭hese rates of trying to improve employment outcomes for people with disabilities 鈥� and particularly for people with intellectual and developmental disabilities 鈥� have been stuck for 30 years or so,鈥� Taylor said. 鈥淲e just haven鈥檛 seen a lot of positive change.鈥�

That鈥檚 reflected in the report: In the past five years, the lowest rate of 鈥渘o engagement鈥� in higher education or employment was 25% for students who left during the 2017-2018 school year. The highest rate of 鈥渘o engagement鈥� was 30% for students who left in the 2019-2020 school year, which may also reflect the effects of COVID-19, Taylor said.

Washington students with intellectual disabilities also have lower rates of competitive employment, defined as a part-time or full-time job with similar wages as non-disabled workers.

At around 12% for students with intellectual disabilities and 15% for students with autism, rates of competitive employment in Washington are even lower than the national average, Taylor said 鈥� although he cautioned that it鈥檚 difficult to compare state and national datasets due to how the information is collected. found rates of competitive employment for students with intellectual and developmental disabilities nationwide was 20% in 2014.

The report also includes rates of 鈥渙ther employment,鈥� which includes employment of disabled workers at salaries below minimum wage. That鈥檚 still legal in 37 states, including Washington, from the National Partnership for Women and Families. Congressional lawmakers to end that practice in February.

Taylor said there鈥檚 a lot being done on both the federal and state levels to improve rates of employment and education among youth with disabilities transitioning to adulthood.

It鈥檚 been 10 years since the Workforce Innovation and Opportunity Act of 2014 was implemented, which requires state vocational rehabilitation agencies 鈥� which provide employment services to people with disabilities 鈥� to use at least 15% of their federal funds on making sure students with disabilities have access to services that help them find employment after school.

States are given a lot of leeway as to how they attempt to meet that goal, but Taylor said one of the most promising ways is through facilitating paid work experiences before students leave school. Research shows students are much more likely to pursue further employment or education if they鈥檝e already experienced what paid work is like, he said.

In Washington, Taylor鈥檚 own work with Washington State University, for example, includes developing the , which helps students determine what services are available to them.

鈥淭he idea is really to impact the numbers that we鈥檙e seeing here, and to bend these trajectories of students that have been stuck鈥ort of all across the country,鈥� Taylor said.

is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Washington State Standard maintains editorial independence. Contact Editor Bill Lucia for questions: info@washingtonstatestandard.com. Follow Washington State Standard on and .

The 1975 passage of what is now known as the Individuals with Disabilities in Education Act established that every child, no matter how profound their needs, has a right to a 鈥渇ree and adequate鈥� public education. In 1990, the Americans with Disabilities Act enshrined in law the right of people with disabilities to enjoy the fullest possible access to jobs, housing and other pillars of a life of dignity. It meant they were entitled to have a wheelchair ramp, sign language interpreter or other forms of assistance that would help them literally take a place at the tables where discussions of their needs were underway. 

Once included, people with disabilities pushed for a shift in thinking about how disability issues should be framed. In the past, the non-disabled people making decisions about how to meet the needs of people with disabilities employed what was often described as the medical model. The goal was to determine how to make up for physical, neurological and intellectual deficits. 

Today, many disabled people prefer what they call the social model, which instead identifies systemic barriers to participation in society, including ignorance, bigotry and social exclusion. The new goal is to make the environment more inclusive and hospitable to everyone. 

Nowhere has this change of attitude been more apparent than among autistic people. Autism, once blamed on poor parenting, is now understood, in scientific terms, to be a neurotype 鈥� not a condition resulting from a lack of anything physical or psychological, but a body and brain wired differently. Not only is it impossible to fix or cure autism, many autistic adults say, it鈥檚 not desirable; autists have abilities that non-autistic people don鈥檛. 

And they are demanding a voice in how their own needs should be met. As the motto of the Autistic Self-Advocacy Network puts it: 鈥淣othing about us without us.鈥�

One flashpoint is applied behavior analysis 鈥� long described as the 鈥済old standard鈥� intervention for autism. Developed and nurtured into a multi-billion-dollar industry by neurotypical researchers, parents and service providers, ABA is now the chief therapy recommended when a child is diagnosed as autistic. 

Created in the 1980s, ABA aimed to condition autistic children to act as neurotypically as possible using punishments including slaps, electric shocks and withholding of food. Many parents saw its goals as desirable 鈥� autistic youngsters can exhibit behaviors that can exhaust caregivers and teachers, and make friendships difficult, if not impossible. Over the years, ABA has moved away from physical punishment, and many families credit the therapy with helping their child make miraculous strides. 

But many adult autists believe even its more recent methods of withholding toys, treats and attention and physically compelling patients to make eye contact 鈥� which some find extremely painful 鈥� can be extremely damaging to their mental health. Some, who have become autism researchers themselves, have documented harms ranging from dramatically higher incidences of PTSD to a debilitating focus on compliant behavior that impairs participants鈥� ability to act independently as adults.

And research from, among other sources, a multi-disciplinary team of university scholars and the 鈥� which insures thousands of autistic military dependents who have undergone the treatment 鈥� has found the evidence base for ABA thin and of poor quality. This is particularly troubling to critics of ABA, as it is often the only therapy offered to parents, to the exclusion of other, possibly more effective, treatments.

During , Julia Bascom, until recently the network’s executive director, offered an example of how changing the prism through which disability is viewed clashes with the most prevalent therapies and services:

鈥淚n the medical model, autism means that my senses are disordered. If sounds hurt me, the solution is to fix how my brain is processing those sounds, or teach me how to get used to it, or at least how to hide my discomfort. The problem is located in my body. In the social model, the solution to auditory overload is to give me a pair of headphones. 

鈥淭he social model also allows us to acknowledge complexity 鈥� that the same painful sensitivity might also make my experience with music uniquely transcendent. The same thing that makes wool unbearably itchy might also make water between my fingertips more soothing than anything else in the world. Maybe not all of those things need a 鈥榮olution.鈥� Maybe autism might need a more nuanced approach than has traditionally been offered.鈥�

There are also concerns that trying to alter a fundamental aspect of a person鈥檚 identity 鈥� especially without their consent, as in young children 鈥� violates their rights.

An assistant professor who teaches bioethics at the University of Pittsburgh School of Nursing, Daniel Wilkenfeld was diagnosed as autistic after an evaluation of one of his children 鈥� a common occurrence. ABA鈥檚 goal of trying to train youngsters to act in ways found socially acceptable is unethical, he wrote in a 2020 paper published in the Kennedy Institute of Ethics Journal.

鈥淎utism advocates are fully justified in their concerns,鈥� wrote Wilkenfeld and co-author Allison McCarthy. 鈥淭he rights of autistic children and their parents are being regularly infringed upon. Specifically, we will argue that employing ABA violates the principles of justice and nonmaleficence and, most critically, infringes on the autonomy of children and (when pushed aggressively) on parents as well.鈥�

The most basic problem, they say, is that the therapy is promoted even though it may not benefit children themselves: 鈥淚f we are correct that the use of ABA at least frequently violates the standard principles of bioethics, then this has massive implications for health care and society generally.鈥�

Like many critics, Wilkenfeld notes that ABA was developed in tandem with so-called conversion therapy used to 鈥渢reat鈥� suspected homosexuals and transgender people 鈥� in the same lab, by the same researchers. But the reasoning that soon turned the research community away from using 鈥渙perant conditioning鈥� on LGBTQ people has not been extended to autistic children. 鈥淭hankfully, most of society recognizes that being gay is not a problem,鈥� he says. 鈥淭here is less recognition that, for the most part, being autistic is a perfectly valid and helpful identity to have.鈥�

Indeed, one rarely discussed aspect of attempting to replace autistic traits with more 鈥渘ormal鈥� ones is that it can wipe out the ways in which neurodivergent people like to socialize and play. 鈥淪tims鈥� 鈥� self-soothing rocking, hand-flapping and vocalizations that some autistic people use to cope with overstimulation 鈥� can also be expressions of joy. ABA discourages both.

鈥淲ould you tolerate being told that the proper way to express happiness is to spin in circles, but then be punished when you smiled or laughed instead?鈥� Chloe Everett, a psychology student at the University of North Carolina Asheville who experienced ABA as a child, asked in a . 鈥淚 don’t think so.鈥�

It was huge news. At the time, an autism diagnosis frequently meant life in an institution for the child in question. The opening of a path to a version of a 鈥渘ormal鈥� life seemed nothing short of a miracle. Few people questioned the history of Lovaas鈥檚 research or the ethics of his methods.

Rather, determined to do right by their children, parents fought hard to get the new therapy, dubbed applied behavior analysis, or ABA 鈥� though it was as expensive as it was supposedly game-changing. Today, there is an excellent chance that a child diagnosed as autistic will receive a referral to a provider of ABA, routinely described as 鈥済old standard鈥� therapy that uses behavior modification techniques to eliminate traits deemed undesirable. 

As the rate of U.S. children identified as autistic has risen to 1 in 36, an entire industry has grown up around them. Where once parents had to sue to force school systems, social service agencies and insurers to pay for what was billed as an autistic child鈥檚 only fighting chance, today there are ABA treatment centers where families and schools can send a child; therapist degree programs; at least 100 companies running networks of ABA centers; countless standalone programs; dedicated ABA schools that students attend full time at public expense; and ABA training for special education teachers. With all this comes the potential for profit 鈥� up to , according to investment firms 鈥� and thus an army of lobbyists and public relations specialists making sure ABA is the first, and often only, therapy available. Armed with testimonials of success, parents became 鈥� and many remain 鈥� their zealous ambassadors. 

But 37 years after Lovaas’s bombshell article, researchers, therapists and autistic adults who themselves were ABA patients as children are pushing back. Proponents of other approaches and some educators 鈥� as well as the U.S. Education Department 鈥� have expressed frustration over the depth with which ABA has become ingrained, to the exclusion of other therapies and the potential detriment of potentially hundreds of thousands of children. A critical mass of advocates is challenging the notion that non-disabled diagnosticians should get to decide how autistic children should be treated 鈥� indeed, how the entire concept of disability should be defined. 

The U.S. Department of Defense, among other research organizations, has called into question whether ABA actually works. And scholars are investigating whether it causes harm to the children subjected to it. Some who experienced the intervention say it absolutely does.

The problems with ABA started early on, beginning with Lovaas’s own beliefs.

“You start pretty much from scratch when you work with an autistic person,鈥� he told Psychology Today in 1974. 鈥淵ou have a person in the physical sense 鈥� they have hair, a nose, a mouth 鈥� but they are not people in the psychological sense.” 

This lack of humanity, Lovaas did not shy away from saying, justified using electric shocks, slaps, withholding of food and other forms of physical punishment to 鈥渆xtinguish鈥� autistic traits 鈥� even joyful ones 鈥� and replace them with 鈥渘ormal鈥� behaviors. 

Simultaneously, Lovaas was using the same methods to 鈥渢reat鈥� suspected homosexuals and transgender people 鈥� so-called conversion therapy, which was quickly recognized as a human rights abuse. But the same reasoning that propelled the research community to turn away from using 鈥渙perant conditioning鈥� on LGBTQ people was not extended to autistic children. Instead, proponents charged ahead 鈥� even though Lovaas鈥檚 own landmark study does not come close to what many . The Norwegian-born psychologist, who died in 2010 at age 83, had personally decided which children received his pioneering intervention and which became the control group. Six years after his initial publication, Lovaas conceded that ABA becomes less effective over time, because, 鈥淭hese people are so used to pain that they can adapt to almost any kind of aversive you give them.鈥� 

More concerning, a growing body of research from, among other sources, the and a multi-disciplinary team of university scholars called Project AIM has found the evidence base for ABA is too thin and of too poor quality to justify its widespread adoption. The majority of studies that have found it effective are rife with industry conflicts of interest. 

And many former patients who were subjected to ABA as children believe the treatment is abusive. found that just 5% of autists 鈥嬧�嬧�� a term used by some people with autism 鈥� support the therapy, with a majority of neurotypical relatives of autistic people opposing it. 

As neurodivergent adults have moved into the ranks of academic and independent researchers, some have begun compiling evidence that ABA subjects are more likely than other autists to suffer from PTSD and other serious mental health problems. 

鈥淚t doesn’t seem to be on anyone’s radar that these interventions could cause harm,鈥� says Kristen Bottema-Beutel, a Boston College professor and an author of the Project AIM . 鈥淭here seems to be this unwillingness to listen to autistic people who say that it does.鈥�

It鈥檚 a Catch-22, she continues: 鈥淭here’s no evidence. But the reason there’s no evidence is because we are unwilling to collect it.鈥�

‘My monkey tricks were impressive but dehumanizing’ 

Unlike Lovaas, most of today’s ABA therapists don’t wield paddles or electric shocks. But they continue to push for compliance in ways many parents and autistic adults describe as controlling and abusive. There鈥檚 no more slapping, but toys, treats and 鈥� possibly most damaging 鈥� attention are frequently withheld when a child is not compliant. The goal remains 鈥渆xtinction鈥� 鈥� the term still used for the process of drilling until an autistic behavior no longer takes place. The centerpiece of this conditioning still bears the name Lovaas gave it: the discrete trial.

Often delivered for long periods, and beginning at ages when children are too young to sit still and obey commands, ABA involves a therapist giving an instruction 鈥� such as asking the child to make eye contact, fold their hands in their lap or speak out loud. Positive and negative feedback comes repeatedly and rapid-fire, sometimes including physical reinforcement like turning the child鈥檚 head or holding their hands down. When the patient complies, a new command is introduced. 

Sometimes, the targeted behavior is dangerous for the child, such as head-banging, or exhausting for caregivers, such as smearing food or feces. Other times, it鈥檚 simply a visible deviation from 鈥渘ormal.鈥� Either way, the goal is to train the child to respond differently to the surrounding environment. 

The upshot, say many adult autists, is that because patients appear more neurotypical, non-disabled people may believe they are 鈥渂etter,鈥� when in fact they may well have sunk into a state of burnout and are developing mental health issues. 

From a non-autistic perspective, many of ABA鈥檚 goals seem entirely reasonable 鈥� indeed, even a kindness undertaken to facilitate a child鈥檚 chances of social acceptance. It鈥檚 hard to make neurotypical friends, the reasoning goes, if your affect is flat or you make guttural noises when you are excited. Teachers can鈥檛 deliver lessons if they鈥檙e trying to keep a student from bolting from the classroom. It鈥檚 nigh unto impossible for a parent to finish the grocery shopping with a kid who has melted down and may be physically out of control.

ABA, autistic adults say, may train a child to stop some of these behaviors. But it does nothing to address the underlying causes or teach coping skills, and comes at a tremendous psychological cost. To someone who is easily overstimulated, buzzing fluorescent lights, hyperactive siblings or continual changes of setting and activity can make classrooms and public spaces a sensory nightmare.

Take, for example, the common ABA goal of asking a child to make eye contact. While there are several levels of expertise, and therapists鈥� training varies, the board that certifies ABA practitioners 鈥渞equires no education and training on autism in general, let alone [its] cognitive and neurological characteristics,鈥� the journal . So therapists who compel eye contact 鈥� even going so far as to turn the child’s head so they are face to face 鈥� may not know that the portion of autistic children鈥檚 brains that is primarily responsible for anxiety. 

One way autists cope with anxiety is to 鈥渟tim鈥� 鈥� make sounds or movements, such as hand-flapping or rocking, that discharge this overstimulation. The more overstimulated a child gets, the more pronounced the behavior. Unable to self-soothe or leave an overwhelming environment, the child is likely to melt down. In trying to eliminate stims, the authors of the Cogent Psychology article report, ABA makes 鈥渁rbitrary distinctions between which movements are pathological and which are not.鈥�

鈥淎 lifetime of being punished for certain movements, and being forced to engage in eye contact despite the physiological pain and discomfort of doing so, is psychological and physical abuse,鈥� they write. 鈥淎 lifetime of being forced to sit still with no regard for actual cognitive abilities can create further emotional and psychological harm.鈥� 

Autists describe attempting to appear 鈥渘ormal鈥� as masking or camouflaging. It often takes so much effort that it can suck up all of a person鈥檚 energy, meaning they may not actually hear a lesson being delivered or be able to engage with a conversation. If directed to do something that is a physical impossibility, a child may not even be able to mask. 

Nor will behavioral therapies do anything to change what a person鈥檚 neurotype 鈥� the scientific label for a brain and body that operate differently 鈥� physically prevents them from doing.

鈥淭hey are neurological problems, not problems with my social understanding or intellect,鈥� one adult who experienced ABA told researcher Laura Anderson for published in the journal Autism. 

Research on the harms of masking is mounting. published in Advances in Autism found ABA participants were 86% more likely to meet the diagnostic criteria for PTSD than autistic people who were not exposed to the therapy. Nearly half of those affected displayed PTSD symptoms that would be considered at 鈥渆xtreme levels of severity.鈥� 

An suggests that separate from mental health conditions, with heightened risk of suicidality, already than the general population. 

Summarized one participant quoted in Anderson鈥檚 report: 鈥淢y monkey tricks were impressive but dehumanizing.鈥� 

Who wouldn’t want to hear, ‘I love you’?

When Elizabeth鈥檚 daughter Lily was diagnosed at age 3, she was told to start ABA as soon as possible, preferably for 40 hours a week. 鈥淚t鈥檚 just overwhelming,鈥� Elizabeth recalls. 鈥淚 didn鈥檛 know anything about the diagnosis. I didn鈥檛 understand what it could mean.鈥� (To protect the child鈥檚 privacy, Elizabeth and Lily are pseudonyms for a mother and daughter who live in a Massachusetts city that is home to a number of universities.)

A scientist, Elizabeth downloaded all the research she could find and immediately became concerned. Because of ABA鈥檚 focus on how many correct responses a child provides, there was data galore. But it documented the number of times it takes to extinguish or create a behavior. None of it told her how Lily鈥檚 life might change. 

Lily is hyperlexic, meaning that for such a little girl she had a huge vocabulary. But she is sometimes nonverbal. For some autists, speaking out loud may be physically difficult, even impossible. Coordinating the complex physical and mental functions that go into talking may take so much effort that it wears them out or sends them into a meltdown.

A common criticism from autistic adults who experienced ABA is that they used precious energy struggling to say what the therapist wanted to hear just to get the exercise to stop. A therapist may eventually succeed in getting the child to name the toy they want, but it often stymies meaningful communication.   

Unaware of the hurdles speech can pose, parents are often thrilled when ABA teaches their child to speak 鈥� after all, who wouldn’t want to hear, “I love you”? They rarely realize that other approaches could facilitate more interaction while taxing their child less.

In fact, because ABA is frequently offered in place of speech-language therapy or assistive technology 鈥� such as programmable electronic 鈥渢alkers鈥� that allow children to piece together pictures or symbols into sentences or even stories 鈥� parents and teachers may not be aware of how much language a child actually has.

Lily spoke as a small child, but as she got older, she would stop talking for a day or two at a time. Elizabeth wanted to teach her to sign but was discouraged by health care providers who had heard from ABA therapists that children given alternate means of communication are less likely to become verbal. 

When Elizabeth was first looking into ABA鈥檚 research base, she saw that among the evidence that it works was data on the number of times a patient speaks. To her, this was a poor substitute for knowing whether Lily could describe how she felt or what she was thinking about.

Lily now has a device she can use when she can鈥檛 or doesn鈥檛 want to speak. Often, Elizabeth says, the girl is much more expressive with it. 

鈥淵ou can train any mammal to do the things that ABA can train your kids to do,鈥� Elizabeth says. 鈥淗ow a kid is feeling and growing in terms of their relationships and their anxiety and feeling comfortable with people 鈥� that鈥檚 really different than sitting at a table and pointing at a picture nine times out of 10.鈥� 

Based on data gleaned from the nearly 10 million military dependents it insures, the U.S. Department of Defense has repeatedly called the evidence supporting ABA “,” noting there is no research to determine whether the small number of participants who show improvement 鈥� 15% 鈥� do so because of treatment or simply because a child has matured. After a year of the therapy, the department reported to Congress in 2019, 76% of 16,000 participating autistic children saw no change, and 9% worsened.

(The private nonprofit National Academies of Sciences, Engineering and Medicine is conducting a federally mandated of the Defense Department鈥檚 autism intervention research. Its findings are slated for release in summer 2025.)

Even accepting more typical behavior and communication as legitimate goals, research has found scant evidence that the treatment achieves those outcomes. Results of a randomized trial in England, for instance, 鈥渟uggest lack of clinical effectiveness,鈥� in 2020. A of the 鈥淟ovaas Method鈥� by the U.S. Department of Education鈥檚 What Works Clearinghouse looked at 58 studies, concluding that only two even partially met its standards.  

Project AIM’s , published in 2020, found little high-quality research 鈥� and little evidence in the investigations that did meet rigorous standards 鈥� that supported ABA鈥檚 efficacy. Of the 150 investigations undertaken between 1970 and 2018 the Project AIM team examined, had serious conflicts of interest, which less than 6% disclosed. 

After an autistic researcher, Michelle Dawson, pointed out that Project AIM had not considered whether the studies it analyzed reported side effects or harm, members reexamined them and found that only 11 included even cursory mentions of participants鈥� psychological or physical distress.

Including adverse events data should be standard, says Bottema-Beutel, the Boston College professor and Project AIM author: 鈥淚t is in other fields, and it absolutely isn’t in autism research. 鈥� It’s especially important because there is an enormous community of autistic people who say that they have been harmed by participating in these interventions.鈥�

A related flaw in the overall body of research, Bottema-Beutel adds, is that it disregards what autistic people say they want in the way of therapeutic support. 鈥淚t would be difficult to find studies that were well designed, that don’t have risks of bias [and] that show improvement on meaningful outcomes that autistic people care about,鈥� she says. 鈥淪how me an ABA study where they improve quality of life.鈥�

‘It was so humiliating being there’

Concerned about the way ABA-affiliated researchers defined and quantified success, Elizabeth went back to the internet and searched for opinions from autistic adults. 鈥淚 just wanted to hear from older autistic people who experienced therapy,鈥� she says. 鈥淎nd try to understand that from my daughter’s perspective, because at the time, she certainly couldn’t tell me.鈥�

What she heard were responses like these:

鈥淚t resulted in corrosive damage to self-esteem and deep shame about who I really am,鈥� told a University of California researcher in 2017. 鈥淣o effort was made to explain autism to me or to explain the role of sensory overload in issues like meltdowns, shutdowns, etc.鈥�

Therapists, another former participant at the Autistic Self Advocacy Network, 鈥渢each you to anticipate that when you say 鈥榥o,鈥� they鈥檒l bulldoze through that because you don鈥檛 own your own body.鈥� 

Another said she was left with crippling social anxiety: 鈥淎ll of those things that I was doing wrong would automatically go through my head any time I was in a social situation. … I would be inherently super judgmental and self-critical about everything I was doing to the point where even in some social situations, I just shut down.鈥�

And: 鈥淚t was so humiliating being there.鈥� 

Perhaps the most painful element of the swelling controversy about ABA is the clash of perspectives of neurotypical parents and autistic adults who say 鈥� often bluntly 鈥� that the effort families are making to do right by their child is misguided. The conversation is especially freighted because both groups have unhappy histories. Until Lovaas, poor parenting was blamed as the root cause of autism. For their part, many autistic adults are enraged that they are not routinely invited to help shape research and policy. 

Autistic adults who believe they were harmed by ABA are quick to say they believe their parents were doing the best they could with the information and resources they had. 鈥淚 am not mad at them for their effort,鈥� one autistic woman looking into trauma rates. 鈥淭hey weren鈥檛 disrespectful. They just had a flawed paradigm for autism, and therefore, what they tried didn鈥檛 work. That doesn鈥檛 make them bad people.鈥�

Many parents wholeheartedly believe ABA delivers great victories. Often, they are proud that after their struggles to find services and pay for them, their child talks, follows directions and has far fewer disruptive behaviors.  

One of the most visible advocacy organizations, has played a leading role in helping families of autistic children press for expanded access to ABA . 

The organization鈥檚 stance on ABA is that it may be effective for some people and not others; therapies should be tailored to the individual and should not attempt to enforce behaviors based on social norms. When implemented properly, the organization holds, 鈥淎BA can lead to improvements in IQ, adaptive behavior, communication skills, social skills and a reduction in challenging behaviors.鈥� 

The evidence behind behavioral science is sound, says Andy Shih, Autism Speaks鈥檚 chief science officer. But as with any other treatment, there can be differences in how a therapy is conducted 鈥� particularly given the range of training and experience among therapists. A skilled practitioner working in the right conditions can succeed in changing behavior, he says, most notably eliminating those that endanger a child.    

鈥淓verybody experiences ABA differently,鈥� says Shih. 鈥淭he setting in which we see them, the quality of the service provider, they all make a difference, I think. In general, even though there are established standards and criteria in terms of what a good autism service should look like 鈥� just like in other branches of medicine, what is ideal and what is actually delivered, sometimes there’s a big gap.鈥�

Eileen Lamb, director of social media for Autism Speaks, credits nine years of ABA for helping one of her children, who is nonverbal and has a potentially dangerous eating disorder called . The boy, Charlie, is now able to express his basic needs.

鈥淗e鈥檚 also learned safety skills like being able to 鈥榮top鈥� when someone asks him to,鈥� Lamb said in a statement provided by Autism Speaks. 鈥淎BA was also successful in helping Charlie through his fear of the doctor and dentist. We don鈥檛 have to put him under anesthesia for dental exams/interventions anymore, which is incredible.鈥�

Similar glowing recommendations from parents abound. Last summer, a group of Indiana parents after being alerted by their kids鈥� therapy centers that the state wanted to cut reimbursement rates. They gathered outside the governor鈥檚 mansion, holding signs that said, 鈥淎BA is the way鈥� and, 鈥淭hey wouldn鈥檛 be who they are today without ABA.鈥� 

In Virginia, then-Delegate Bob Thomas kicked off a 2019 press conference announcing a push to expand access to autism therapy by asking the grandson of a local advocate to step to the dais. 

鈥淢ark is a great example of why we are here today,鈥� , explaining that the child had once been unable to speak. 鈥淭hanks to the services and the resources Mark had access to, he’s now able to stand here in front of a roomful of media, media cameras and lead us in the Pledge of Allegiance.鈥�

In response to a reporter鈥檚 question about what was at stake, a mother of three autistic boys stepped to the mic: 鈥淚f it weren鈥檛 for the behavior therapy that we receive, we would not be able to go out in public like this today.鈥�  

Add to displays like these on , memoirs penned by parents who credit ABA with their children鈥檚 miraculous recoveries and that the therapist’s arrival gives them a much-needed break from kids who require constant supervision. 

Research has begun to probe the disconnect between parents鈥� and children鈥檚 perceptions. The , for example, predicted that nearly half of autistic children exposed to ABA will meet the threshold for a PTSD diagnosis within four weeks, while caregivers鈥� satisfaction will rise as the treatment goes on.

Still, the study noted, 9% of caregivers surveyed discontinued the therapy because they didn鈥檛 see enough progress or saw negative changes. Overall, 鈥渃aregiver satisfaction was generally reported within the neutral range. The longer a child was exposed to ABA, the more likely a caregiver was to rate the intervention as effective for improving overall functioning.鈥� 

Have you seen Mr. Potato Head?

Denise鈥檚 son Logan was 27 months old when a neurologist at the prestigious Boston Children鈥檚 Hospital diagnosed him with autism. He was smart and carefree but very rambunctious, more likely to throw toys than play with them. He never spoke words but used his voice to stim. (To protect Logan鈥檚 privacy, he and his mother have been given pseudonyms. The family lives in western Massachusetts.) 

Home to numerous elite research universities 鈥� including Harvard, where behaviorist B.F. Skinner planted ABA鈥檚 conceptual roots 鈥� Massachusetts is considered a great place for autistic children. It was one of the first to mandate insurance coverage for autism services and now contracts with 22 companies to provide intensive early interventions. ABA dominates the offerings. 

Eager to get her son as much help as possible, Denise got him on wait lists for two treatments: ABA and a lesser-known approach called Floor Time. Within two weeks, an ABA therapist was spending 14 hours a week with Logan. 

For a while, Denise says, things went fine. But when COVID-19 forced the therapy online, Logan balked. 

鈥淭he idea that he was hiding in the closet because I was turning on the computer for ABA was just like a total alarm going off,鈥� she says. 

Denise told the therapist the discrete trials didn’t seem like a good fit, fears that were compounded when in-person services started back up. At her first visit, the therapist invited Logan to jump on a trampoline with her. She pointed a finger skyward and said, 鈥淯p, up, up.鈥� Pointing his own finger, a delighted Logan started shouting the word with her. Saying words out loud was new for him.

The victory was short-lived. The therapist moved on, asking Logan to put his hands in water. Still excited, he kept pointing and chanting, 鈥淯p, up, up鈥� instead. The response was gentle but devastating: The therapist folded his finger down and moved his hands where she wanted them. The boy shut down. 

鈥淭o see the joy disappear from his face 鈥� all of a sudden he鈥檚 no longer a willing participant,鈥� Denise recalls. 鈥淭here was no abuse or anything, but she made him comply.鈥� 

Denise canceled Logan’s ABA. Meanwhile, his name had come up to the top of the Floor Time wait list. Floor Time uses play-based activities that the child chooses. The aim is to make interactions increasingly complex.

During the first session, Logan picked up a Mr. Potato Head and threw it. Denise watched with bated breath, anticipating negative reinforcement. But the new therapist started throwing toys, too. And then wandered the room picking up toys and asking in a silly voice if they had seen Mr. Potato Head.

鈥淎ll of a sudden, [Logan] is picking up a toy and perfectly imitating her intonation 鈥� without words, but her tone perfectly,鈥� says Denise. Next, he held toys in front of his mouth and said words for them. Soon, Logan was a chatterbox, talking about the dream he had the night before, ways to defeat bad guys, becoming a superhero 鈥� everything. 

Insurance codes and new markets to mine

As recently as the year 2000, insurance coverage was not required for autism therapies, which cost from $10,000 to $100,000 per year. After fierce lobbying, by 2017 advocates succeeded in pushing laws requiring reimbursement in 46 states. As this sea change was taking place, ABA therapists were among the few people with formal credentials who could step into jobs created to help families access newly covered services. 

This meant that ABA practitioners were often the ones who created insurance billing codes, referral networks and other systems, making them de facto gatekeepers. As a result, though many states require coverage for other types of therapy, getting care other than ABA can be incredibly difficult. Parents who get referrals for speech and occupational therapists, or for augmentative and assistive communication technology for their nonverbal children, often find that the only available providers typically offer ABA.

Revel Weber has firsthand experience with this. A clinical social worker and the autistic parent of four children, one of them autistic and two with ADHD, several years ago she was asked to create a program to serve autistic children belonging to the White Earth Nation in northern Minnesota. As part of her research into treatments that would both benefit tribal families and qualify for public funding, Weber took some online ABA training courses. 

She quickly decided it wasn鈥檛 appropriate for White Earth children. In addition to being uncomfortable with the focus on compliance, Weber, who is not American Indian, believed ABA could play negatively into historical trauma associated with attempts to assimilate Native children. 

Like many states, Minnesota requires insurers to pay for a number of autism therapies, but as Weber explored alternatives to ABA, she ran into a maze of red tape. In their rush to provide the greatest access to services, the government created Medicaid reimbursement codes 鈥� the backbone of health care billing 鈥� that reflected the most available treatments. The majority were ABA. Thirty-seven years after Lovaas’s bombshell study, there are numerous ways to become an ABA therapist, ranging from full-fledged degrees to online courses. But there are far fewer providers of other kinds of treatments. Those ABA therapies are now locked into the codes, meaning billing for anything else can be difficult.

The ABA sector’s strategies for making its services widely available were smart, says Jeffrey Guenzel, head of the International Council on Development and Learning, which provides Floor Time training. But it has made it challenging for other therapies to become established. 

The intervention鈥檚 rapid spread has also resulted in uneven quality, even supporters like Shih, of Autism Speaks, say. Some practitioners hold credentials that may require an advanced degree and long experience, while others 鈥� typically identified as technicians 鈥� may have taken only a few hours of virtual training.    

Venture capitalists are up front in saying the increase in autism diagnoses and continued unmet demand suggest the sector is poised for explosive growth. In , one investment company asserted that there are about 1 million autistic children in the United States. In 2020, the analysis said, ABA programs generated $1.4 billion 鈥� a figure expected to grow to $2.45 billion by 2025. And there are new markets to mine.   

鈥淎BA treatment is widely recognized as the most effective method for treating [autism], but its evidence-based treatment methods are applicable beyond [autism] alone,鈥� the brief asserts. 鈥淢ental health issues in schools and the provision of more providers will ultimately expand ABA recognition beyond [autism] exclusively.鈥� Other areas of opportunity, the investment bankers鈥� materials say, include ADHD, Obsessive-Compulsive Disorder, Panic Disorder, Oppositional Defiant Disorder and PTSD.  

The one and only option

For the first few years after earning a degree in special education, Ryan Haenze, himself autistic, taught in Twin Cities school districts. His training was to let students鈥� interests steer his instruction, but this wasn鈥檛 what his higher-ups wanted. They wanted behavior management, he says 鈥� specifically, compliance. 

The kind of instruction he favored because of his autism 鈥� sensory accommodations, interactive projects and movement breaks for the kids 鈥� earned him bad evaluations. 鈥淚 had administrators saying, 鈥榃hat you are doing is not best practice. You need to physically put these kids into chairs, do hand-over-hand,鈥� ” says Haenze, meaning moving the child鈥檚 hand with his own. 鈥淚t needed to be those specific, very structured methods.鈥� 

Haenze repeatedly pointed out that those strategies often lead to explosive behavior. Once, he said, he watched helplessly as one of his third graders was removed from school in handcuffs. 

At many schools like Haenze’s, administrators adopt ABA principles because they are viewed as best practices. But other places take a more formal approach. For example, Boston Public Schools now offers ABA in every school. Between 2011 and 2021, , the number of behaviorists in the district doubled. Families with autistic kids in Cambridge Public Schools are routinely placed in ABA-aligned classrooms.

Many communities have privately operated ABA schools that students attend full time at district expense. Haenze says most of his students received therapy at ABA centers as toddlers and preschoolers. In kindergarten, they began spending half their day at school and the rest at an ABA center 鈥� a common arrangement.

However, the U.S. Department of Education鈥檚 Office of Special Education and Rehabilitative Services has warned schools not to let ABA crowd out other services that are supposed to be considered for students鈥� Individualized Education Programs. Specifically, the department said it had received reports that a growing number of children were not being evaluated by the range of professionals who typically determine what the appropriate 鈥� and under a child’s IEP, legally mandated 鈥� services are.

鈥淪ome [special education] programs may be including applied behavioral analysis (ABA) therapists exclusively without including, or considering input from, speech language pathologists and other professionals who provide different types of specific therapies that may be appropriate,鈥� . 鈥淲e recognize that ABA therapy is just one methodology used to address the needs of children with [autism] and remind states and local programs to ensure that decisions regarding services are made based on the unique needs of each individual child.鈥�

Communication support is one accommodation that has become increasingly scarce as ABA鈥檚 strategies for teaching children to be verbal have spread, says Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. Because many people believe spoken words are superior, special educators often aren鈥檛 trained in the alternative technologies, she says. 

For Haenze, being an autistic teacher unable to convince his co-workers he had useful insight was maddening, he says. Receiving poor evaluations from supervisors unwilling to consider that his ideas might make classrooms calmer and students more engaged was demoralizing. Worse, he says, was neurotypical teachers鈥� misunderstanding of their students鈥� capacity for self-expression 鈥� and, by extension, their intellect.

Midway through his sixth year, Haenze quit teaching and went to work for the Minnesota Disability Law Center as an advocate.

‘I don鈥檛 ever want them to feel shame’

Given the prevalence of ABA, it is difficult even for parents who don’t want to engage with the treatment to avoid it entirely. Denise says that for a long time, she was asked at Logan’s pediatrician check-ups whether he was getting the therapy. It made her nervous to say no, over and over again, and know that answer is being entered into an official record. Eventually, though, it was so clear the boy was thriving that the conversations stopped. 

Elizabeth, too, rejected offers of ABA interventions many times, simply saying her family doesn鈥檛 think it is a good fit for Lily. She believes she got away with turning down services because her daughter doesn鈥檛 engage in many behaviors that schools typically try to eliminate.

Weber has gone a step further 鈥� choosing, based on her experience as both a therapist and an advocate for her children, not to have her autistic son diagnosed or evaluated for special education, where she would have to fight to turn down ABA-related services. 

鈥淚 am trying to avoid that,鈥� she says, choosing instead to work with the boy and his two neurodivergent brothers herself, at home. 鈥淚 don鈥檛 ever want them to feel shame. I always want to instill pride in who they are.鈥�

Keynote speakers this year include of Harlem Children鈥檚 Zone, of Stanford University, who popularized the idea of 鈥済rowth mindset,鈥� and actor , who starred on Broadway as George Washington in Hamilton. Jackson, who has a child on the autism spectrum, will discuss how doctors, parents and advocates are working together to change the ways neurodivergent kids communicate and learn.

But one issue that looms larger than most in the imaginations of educators is artificial intelligence. This year, South by Southwest EDU is offering dozens of sessions exploring AI鈥檚 potential and pitfalls. To help guide the way, we鈥檝e scoured the schedule to highlight 18 of the most significant presenters, topics and panels: 

Monday, March 4:

: The New School鈥檚 Maya Georgieva looks at how AI is ushering in a new era of immersive experiences. Her talk explores worlds that blur the lines between the virtual and real, where human ingenuity converges with intelligent machines. Georgieva will spotlight the next generation of creators shaping immersive realities, sharing emerging practices and projects from her students as well as her innovation labs and design jams. .

: Educators have long sought a better way to demonstrate learning, adapt instruction and build student confidence. Now, advancements in machine learning, natural language processing and data analytics are creating new possibilities for finding out what students know. This session will explore the ways in which AI is rendering assessments invisible, reducing stress and anxiety for students while improving objectivity and generating actionable insights for educators. .

: Many high-pressure professions 鈥� pilots, doctors and professional athletes among others 鈥� have access to high-quality simulators to help them learn and improve their skills. Could teachers benefit from hours in a simulator before setting foot in a classroom? In this session featuring presenters from the Relay Graduate School of Education and Wharton Interactive at the University of Pennsylvania, panelists will discuss virtual classrooms they鈥檙e piloting. They鈥檒l also address the challenges, successes and possibilities of developing an AI-driven teaching simulator. .

: In just the first half of 2023, venture capital investors poured more than $40 billion into AI startups. Yet big questions loom about how these technologies may impact education and the world of work. How are education and workforce investors separating wheat from chaff? Hear from a trio of venture capital and impact investors as they share the trends they鈥檙e watching. .

: This session will look at the profound transformations in teaching taking place in classrooms that blend AI with tailored, competency-focused education. Laura Jeanne Penrod of Southwest Career and Technical Academy and Nevada鈥檚 2024 will explore AI’s role in enhancing rather than supplanting quality teaching 鈥� and what happens when schools embrace the human touch and educators鈥� emotional intelligence. .

: In this interactive workshop led by women leaders from the University of Texas at Austin and the Waco (Texas) Independent School District, participants will learn how to design effective lesson plans and syllabi that incorporate AI tools such as ChatGPT and DALL-E to help prepare students to address society鈥檚 most pressing needs. .

: If we get AI in education right, it has the power to revolutionize how children learn. But if we get it wrong and fail to nourish children鈥檚 creativity 鈥� their ability to innovate, think critically and problem solve 鈥� we risk leaving them unprepared for a changing world. Creativity is the durable skill that AI cannot replace. And this panel, comprising educators and industry leaders, will explore the role we play in nurturing children鈥檚 innate creativity. .

: This panel, featuring early AI-in-education pioneers such as Amanda Bickerstaff, founder of AI for Education, Charles Foster, an AI researcher at Finetune Learning, and Ben Kornell,  co-founder of Edtech Insiders, will explore their journeys and what they consider the most exciting future opportunities 鈥� and important challenges 鈥� in this emerging space. .

Tuesday, March 5:

: AI鈥檚 continued adoption in schools raises concerns about bias, especially toward students of color. This session, hosted by Common Sense Education鈥檚 Jamie Nunez, will highlight practical ways AI tools impact engagement for students from diverse racial and ethnic backgrounds. It will also address ethical concerns such as plagiarism and issues with facial recognition tools. And it will feature positive student experiences with AI and practical ways to ensure it remains inclusive. .

: In 2024, what defines “AI literacy”? And how can we promote it effectively in schools? Marc Cicchino, innovation director for the Northern Valley Regional High School District in northeastern New Jersey, shares insights on fostering AI literacy through tailored learning experiences and initiatives like the NJ AI Literacy Summit. As part of the session, Cicchino guides attendees through organizing their own summit. . 

: Come watch a live recording of The Cusp, a new podcast hosted by Work Shift鈥檚 Paul Fain, exploring AI鈥檚 potential to not only enhance how we develop skills and improve job quality but exacerbate inequalities in our education and workforce systems. Leaders from Learning Collider, MDRC and Burning Glass Institute will share their perspectives on how AI can reach learners and workers in innovative ways, bridging the gap to economic opportunity. .

: While a few school districts have embraced artificial intelligence, neither the technology companies creating the AI nor the governments regulating it have provided guidance on how to integrate the new tech into classrooms. This has left districts wondering how to integrate AI safely, ethically and equitably. This panel of TeachAI.org founders and advisory members will discuss why government and education leaders must align standards with the needs of an increasingly AI-driven world. The panel features Khan Academy鈥檚 Kristen DiCerbo, Kara McWilliams of ETS, Code.org and ISTE鈥檚 Joseph South. .

Wednesday, March 6:

: Just as artificial intelligence is gaining momentum in education, the early childhood education workforce is experiencing record levels of burnout. A recent survey found many educators say they鈥檙e more likely to remain in their roles if they have access to better support, including high-quality classroom tools and flexible professional development. Could we harness AI to empower our early childhood workforce? This panel, led by the National Association for the Education of Young Children鈥檚 Stanford Accelerator for Learning, will explore the possibilities and challenges of AI in early childhood education. .

Perhaps no one in education needs to adapt more to AI than principals. This discussion with a principal and consultants from IDEO, The Leadership Academy and the Aspen Institute will explore how principals can lead during this time of swift change. Participants will come away with tangible suggestions for fostering innovation, adaptability and self-awareness. .

: This interactive session will give educators an opportunity to explore how they might use AI to advance their work, regardless of their background or technical expertise. 鈥婰ed by project managers and leadership development specialists with Teach For America, it will help participants create their own AI tools, build a deeper understanding of generative AI and develop a better sense of its promises and risks. .

Thursday, March 7: 

: This panel discussion, led by The Education Trust鈥檚 Dia Bryant and Khan Academy鈥檚 Kristen DiCerbo, will look at whether emerging uses of AI in schools could create a new digital divide. It will explore the intersection of AI and education equity and AI鈥檚 impact on students of color, as well as those from low-income backgrounds. The session will offer steps that educators and policymakers can take to ensure that schools factor in the culture and neurodiversity of students. . 

: This session, led by Alex Tsado of Alliance4ai, will explore what鈥檚 required to engage diverse learners to become emerging AI leaders. It鈥檒l also explore how educators can help them build tech and leadership skills and promote an 鈥淎I-for-good鈥� worldview. And it鈥檒l examine the challenges that Black communities face in AI development 鈥� and propose research and solutions that can be scaled easily. .

: This panel brings together of the U.S. Department of Education鈥檚 Office of Educational Technology and Jeremy of Digital Promise for an interactive conversation about generative AI that will integrate two distinctive and powerful vantage points 鈥� policy and research. They鈥檒l reflect on the listening sessions they鈥檝e conducted, talk about policy and share insights from major research initiatives that address the efficacy, equity and ethics of generative AI. .

Countless words have been written about the tragedy of COVID-19: the millions of lives lost, the steep declines in student learning, the trauma of extended isolation, and much more. All true. 

But equally true is that the pandemic had at least one silver lining. If nothing else, it taught us that long-intractable institutions鈥攍ike universities and public school systems鈥攃an change. Immediately, if necessary. 

For years, advocates have been begging institutions to do things differently. The invariable response: 鈥淲e can鈥檛. It鈥檚 too hard. Be patient. Give us time.鈥� Then came COVID-19, and within 24 hours, everything changed. For example, online learning and work, long deemed challenging, became ubiquitous. 

The secret was out. Even the most tradition-bound institutions could change when they had to. Let鈥檚 make sure to take advantage of the best of these emergency measures and make them the new normal. It is a choice. 

From a deficit model to an asset model

Consider my institution, New York University. By listening to the disability community, we are working to change how we educate autistic and other neurodivergent students. We are trying to move from a deficit model to an asset-based model that is neurodiversity-affirming. We have a new Office of Disability Inclusive Culture that now works closely with our Moses Center for Student Accessibility, which provides accommodations and works to provide equal access to learning for students. The office is charged with looking beyond medical- or accommodations-based models toward faculty development, pedagogy, and organizational culture. 

鈥淒isability-inclusive culture鈥� means that the work is community work. How do we impact and shift the attitudes of faculty, staff, and students? Instead of organizing our work around what students cannot do, we are working closely with staff and student self-advocates to show what students can do if we design universally for access and reduce stigma. We are collaborating so that our neurodivergent students can use their strengths and abilities on a path to future employment. 

No one builds lives on their remediated weaknesses. We build our lives based on passions and strengths. Our job as educators is to make those journeys as joyous and productive as possible. 

The old, and often still current, approach assumed autistic students needed to be 鈥渇ixed.鈥� Students registered with offices of disability services for accommodations deemed reasonable. Often these accommodations were implemented universally during the pandemic. Lectures were taped or recorded for all. Students had to have these reasonable accommodations to succeed in the classroom, but that was the minimum. 

Looking ahead, how can universities go beyond the minimum to make access universal? How can they see students for who they are, work with them to identify their strengths, and use those as the foundation for continued learning? What if universities adopted a posture that said, 鈥淵ou don鈥檛 have to change. This is who you are. You are more than enough. How can we best support what you need to continue growing?鈥�

A systemic approach

To that end, a group of NYU students, faculty, and staff from units across the university鈥攆rom IT to instruction to campus safety鈥攊s meeting to systematically solve problems facing students, faculty, and staff. A starting place is making physical spaces more accessible, so our libraries now have sensory rooms that ensure quiet environments for studying. We are intentionally focusing on inclusive pedagogy and, in my former role as vice dean of academic affairs at NYU Steinhardt, have added mini-sessions at each monthly schoolwide meeting to reach as many faculty as possible. 

I teach a course on inclusion and access for undergraduates that gives students the option to attend in person, online, or fully asynchronously. Many neurodiverse students preferred learning online during the pandemic; we must respect that, even if hybrid teaching is much more challenging for educators. It won鈥檛 be easy to figure out how to increase access, but the pandemic has taught us that it is possible. I can鈥檛 very well teach my radical inclusion and disability justice course and insist that all my students show up in person. 

In addition to having multiple means to engage with the material, students in this course have myriad ways to show what they know, including written assignments, oral presentations or works, artistic and musical expression, and multimedia demonstrations. These universally designed assignments capitalize on students鈥� strengths and interests. 

Small steps can make an impact

Many faculty members are thinking about access and their own teaching and policies. Even the simplest fixes can have a major impact. For instance, faculty wonder why few students show up when we post a notice: 鈥淥ffice hours, 9-10 a.m., Mondays and Thursdays.鈥� Not surprisingly, many students would ask, 鈥淲hat鈥檚 an office hour? Am I in trouble?鈥� Now, I鈥檓 careful to reframe the offer: 鈥淚 care about you. I want to understand you better. What issues is this class bringing up for you? 

Please come see me. I鈥檓 in my office from 9:00-10:00 every Monday and Thursday. Or set up an appointment online.鈥� I use this language in my syllabus, the contract I have with students. I also start each class by letting students know they can move and do what they need to do to regulate their own attention. 

We are taking advantage of more autistic peer-to-peer mentoring and support, which research finds is more valid and valuable (; ). This includes a new where I serve as co-principal investigator, through which several of our autistic college students at NYU are mentoring their autistic high school peers on STEM interests and pathways to college. This project just started, but already our autistic university mentors are enjoying being in leadership positions. They are using their strengths and abilities to guide their autistic peers and have indicated how they would have benefited from this type of mentorship as they struggled in the transition to college.

All of this work at NYU began a few years before COVID-19. But it gained momentum in the past few years and will continue to evolve. There is much work to do as universities think about access as well as student development. What it takes is the willingness to center the voice and expertise of students. Advocates can partner with institutions to identify innovative solutions and should be in more leadership positions to impact the change that needs to happen. But we must listen鈥攕tudents are the real experts in their own learning. 

And universities must be bold. If COVID-19 taught higher education anything, it鈥檚 that we must be willing to take risks and do what was once considered unthinkable. The payoff is worth it: students will thrive and flourish as institutions make these changes. 

See more from the Center on Reinventing Public Education and its .