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 “when parents like me are empowered to create solutions.”

“My vision is to expand school choice for special needs families — whether through charter schools, private options, voucher programs, or other parent-empowered models,” she said in a statement to ����Ӱ��. .

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’s 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’s 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 ����Ӱ�� the therapy is both valuable and sought-after. “For the autism community, specifically, many families seek schools that integrate positive behavioral strategies,” she says. “The 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.”

During her visit, McMahon told students and staff she was eager to tell President Donald Trump about the schools. “He doesn’t 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,” she said. 

Since Trump’s 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’s 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’s 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 “environmental toxins” — 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 “disease registry” — a kind of list historically used to sterilize, institutionalize and even “euthanize” 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 “least restrictive environment” possible.          

Families’ 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’s 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’s 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 ����Ӱ�� 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 — much of it now at risk of being defunded by Kennedy — into more effective and humane alternatives.

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’s 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 — one that, among other things, is replacing other special education services in schools — 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 “a specific methodology that was created by the same people that created gay conversion therapy.”  

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. “Despite 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” in terms of providing effective, safe services.  

Edwards recently expanded on her testimony in an interview with ����Ӱ��. 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’s 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’s life. 

The state’s suggests “modern” 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 “behaviors” 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, ‘Hey, I really want to play ball right now.’ 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’t 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, “I 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.” And instead of lobbying for inclusion, for appropriate support and services in schools, we’re saying, “Well, this kid can go to ABA instead.” 

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 “other” 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 — 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?

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 “normal” life seemed nothing short of a miracle. Few people questioned the history of Lovaas’s 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 — 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 “gold standard” 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’s 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 — up to , according to investment firms — 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 — and many remain — 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 — as well as the U.S. Education Department — 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 — 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,” he told Psychology Today in 1974. “You have a person in the physical sense — they have hair, a nose, a mouth — 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 “extinguish” autistic traits — even joyful ones — and replace them with “normal” behaviors. 

Simultaneously, Lovaas was using the same methods to “treat” suspected homosexuals and transgender people — 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 “operant conditioning” on LGBTQ people was not extended to autistic children. Instead, proponents charged ahead — even though Lovaas’s 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, “These people are so used to pain that they can adapt to almost any kind of aversive you give them.” 

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 ​​— a term used by some people with autism — 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. 

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

It’s a Catch-22, she continues: “There’s no evidence. But the reason there’s no evidence is because we are unwilling to collect it.”

‘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’s no more slapping, but toys, treats and — possibly most damaging — attention are frequently withheld when a child is not compliant. The goal remains “extinction” — 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 — 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’s 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’s simply a visible deviation from “normal.” 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 “better,” 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’s goals seem entirely reasonable — indeed, even a kindness undertaken to facilitate a child’s chances of social acceptance. It’s hard to make neurotypical friends, the reasoning goes, if your affect is flat or you make guttural noises when you are excited. Teachers can’t deliver lessons if they’re trying to keep a student from bolting from the classroom. It’s 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’ training varies, the board that certifies ABA practitioners “requires no education and training on autism in general, let alone [its] cognitive and neurological characteristics,” the journal . So therapists who compel eye contact — even going so far as to turn the child’s head so they are face to face — may not know that the portion of autistic children’s brains that is primarily responsible for anxiety. 

One way autists cope with anxiety is to “stim” — 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 “arbitrary distinctions between which movements are pathological and which are not.”

“A 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,” they write. “A lifetime of being forced to sit still with no regard for actual cognitive abilities can create further emotional and psychological harm.” 

Autists describe attempting to appear “normal” as masking or camouflaging. It often takes so much effort that it can suck up all of a person’s 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’s neurotype — the scientific label for a brain and body that operate differently — physically prevents them from doing.

“They are neurological problems, not problems with my social understanding or intellect,” 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 “extreme levels of severity.” 

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

Summarized one participant quoted in Anderson’s report: “My monkey tricks were impressive but dehumanizing.” 

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

When Elizabeth’s daughter Lily was diagnosed at age 3, she was told to start ABA as soon as possible, preferably for 40 hours a week. “It’s just overwhelming,” Elizabeth recalls. “I didn’t know anything about the diagnosis. I didn’t understand what it could mean.” (To protect the child’s 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’s 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’s 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 — 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 — such as programmable electronic “talkers” that allow children to piece together pictures or symbols into sentences or even stories — 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’s 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’t or doesn’t want to speak. Often, Elizabeth says, the girl is much more expressive with it. 

“You can train any mammal to do the things that ABA can train your kids to do,” Elizabeth says. “How a kid is feeling and growing in terms of their relationships and their anxiety and feeling comfortable with people — that’s really different than sitting at a table and pointing at a picture nine times out of 10.” 

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 — 15% — 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’s 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, “suggest lack of clinical effectiveness,” in 2020. A of the “Lovaas Method” by the U.S. Department of Education’s 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 — and little evidence in the investigations that did meet rigorous standards — that supported ABA’s 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’ psychological or physical distress.

Including adverse events data should be standard, says Bottema-Beutel, the Boston College professor and Project AIM author: “It is in other fields, and it absolutely isn’t in autism research. … 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.”

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. “It 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,” she says. “Show me an ABA study where they improve quality of life.”

‘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. “I just wanted to hear from older autistic people who experienced therapy,” she says. “And try to understand that from my daughter’s perspective, because at the time, she certainly couldn’t tell me.”

What she heard were responses like these:

“It resulted in corrosive damage to self-esteem and deep shame about who I really am,” told a University of California researcher in 2017. “No effort was made to explain autism to me or to explain the role of sensory overload in issues like meltdowns, shutdowns, etc.”

Therapists, another former participant at the Autistic Self Advocacy Network, “teach you to anticipate that when you say ‘no,’ they’ll bulldoze through that because you don’t own your own body.” 

Another said she was left with crippling social anxiety: “All 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.”

And: “It was so humiliating being there.” 

Perhaps the most painful element of the swelling controversy about ABA is the clash of perspectives of neurotypical parents and autistic adults who say — often bluntly — 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. “I am not mad at them for their effort,” one autistic woman looking into trauma rates. “They weren’t disrespectful. They just had a flawed paradigm for autism, and therefore, what they tried didn’t work. That doesn’t make them bad people.”

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’s 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, “ABA can lead to improvements in IQ, adaptive behavior, communication skills, social skills and a reduction in challenging behaviors.” 

The evidence behind behavioral science is sound, says Andy Shih, Autism Speaks’s chief science officer. But as with any other treatment, there can be differences in how a therapy is conducted — 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.    

“Everybody experiences ABA differently,” says Shih. “The 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 … just like in other branches of medicine, what is ideal and what is actually delivered, sometimes there’s a big gap.”

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.

“He’s also learned safety skills like being able to ‘stop’ when someone asks him to,” Lamb said in a statement provided by Autism Speaks. “ABA was also successful in helping Charlie through his fear of the doctor and dentist. We don’t have to put him under anesthesia for dental exams/interventions anymore, which is incredible.”

Similar glowing recommendations from parents abound. Last summer, a group of Indiana parents after being alerted by their kids’ therapy centers that the state wanted to cut reimbursement rates. They gathered outside the governor’s mansion, holding signs that said, “ABA is the way” and, “They wouldn’t be who they are today without ABA.” 

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. 

“Mark is a great example of why we are here today,” , explaining that the child had once been unable to speak. “Thanks 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.”

In response to a reporter’s question about what was at stake, a mother of three autistic boys stepped to the mic: “If it weren’t for the behavior therapy that we receive, we would not be able to go out in public like this today.”  

Add to displays like these on , memoirs penned by parents who credit ABA with their children’s 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’ and children’s 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’ satisfaction will rise as the treatment goes on.

Still, the study noted, 9% of caregivers surveyed discontinued the therapy because they didn’t see enough progress or saw negative changes. Overall, “caregiver 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.” 

Have you seen Mr. Potato Head?

Denise’s son Logan was 27 months old when a neurologist at the prestigious Boston Children’s 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’s privacy, he and his mother have been given pseudonyms. The family lives in western Massachusetts.) 

Home to numerous elite research universities — including Harvard, where behaviorist B.F. Skinner planted ABA’s conceptual roots — 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. 

“The 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,” 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, “Up, up, up.” 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, “Up, up, up” 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. 

“To see the joy disappear from his face — all of a sudden he’s no longer a willing participant,” Denise recalls. “There was no abuse or anything, but she made him comply.” 

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.

“All of a sudden, [Logan] is picking up a toy and perfectly imitating her intonation — without words, but her tone perfectly,” 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 — 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’t 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 — the backbone of health care billing — 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’s 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 — typically identified as technicians — 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 — a figure expected to grow to $2.45 billion by 2025. And there are new markets to mine.   

“ABA treatment is widely recognized as the most effective method for treating [autism], but its evidence-based treatment methods are applicable beyond [autism] alone,” the brief asserts. “Mental health issues in schools and the provision of more providers will ultimately expand ABA recognition beyond [autism] exclusively.” Other areas of opportunity, the investment bankers’ 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’ interests steer his instruction, but this wasn’t what his higher-ups wanted. They wanted behavior management, he says — specifically, compliance. 

The kind of instruction he favored because of his autism — sensory accommodations, interactive projects and movement breaks for the kids — earned him bad evaluations. “I had administrators saying, ‘What you are doing is not best practice. You need to physically put these kids into chairs, do hand-over-hand,’ ” says Haenze, meaning moving the child’s hand with his own. “It needed to be those specific, very structured methods.” 

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 — a common arrangement.

However, the U.S. Department of Education’s 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’ 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 — and under a child’s IEP, legally mandated — services are.

“Some [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,” . “We 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.”

Communication support is one accommodation that has become increasingly scarce as ABA’s 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’t 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’ misunderstanding of their students’ capacity for self-expression — 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’t 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’t think it is a good fit for Lily. She believes she got away with turning down services because her daughter doesn’t engage in many behaviors that schools typically try to eliminate.

Weber has gone a step further — 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. 

“I am trying to avoid that,” she says, choosing instead to work with the boy and his two neurodivergent brothers herself, at home. “I don’t ever want them to feel shame. I always want to instill pride in who they are.”

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 “free and adequate” 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 — 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’s not desirable; autists have abilities that non-autistic people don’t. 

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: “Nothing about us without us.”

One flashpoint is applied behavior analysis — long described as the “gold standard” 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 — 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 — which some find extremely painful — 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’ ability to act independently as adults.

And research from, among other sources, a multi-disciplinary team of university scholars and the — which insures thousands of autistic military dependents who have undergone the treatment — 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:

“In 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. 

“The social model also allows us to acknowledge complexity — 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 ‘solution.’ Maybe autism might need a more nuanced approach than has traditionally been offered.”

There are also concerns that trying to alter a fundamental aspect of a person’s identity — especially without their consent, as in young children — 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 — a common occurrence. ABA’s 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.

“Autism advocates are fully justified in their concerns,” wrote Wilkenfeld and co-author Allison McCarthy. “The 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.”

The most basic problem, they say, is that the therapy is promoted even though it may not benefit children themselves: “If 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.”

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

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

“Would 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?” Chloe Everett, a psychology student at the University of North Carolina Asheville who experienced ABA as a child, asked in a . “I don’t think so.”