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ASPartOfMe
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07 Oct 2022, 7:37 am

WHYY

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When Applied Behavior Analysis (ABA) first emerged on the national stage, it was hailed as a ray of hope. It was an intensive, interactive therapy that seemed to have positive results with kids on the autism spectrum, teaching them valuable skills while eliminating unwanted behaviors. It was expensive and time-consuming — so parents lobbied to have it covered by insurance or schools. By the 2010s, they’d largely achieved that goal, and ABA became a standard treatment for kids with autism.

But over the past few years, that first generation of kids to receive intensive ABA has grown up — and they’re telling a different story. Many have criticized ABA as harmful and even abusive, calling it “conversion therapy for autistic people.”

On this episode, we explore the battle over ABA. We hear from a young man who received it as a kid, autistic self-advocates, experts, and parents — all of whom have a different perspective on ABA, its benefits, and whether or not the approach should be revamped or scrapped altogether.

Also heard on this week’s episode:
STAT news reporter Tara Bannow joins us to discuss her investigative reporting on private equity firms that are backing the biggest chains in the country providing ABA, and how that has impacted the quality of services people are receiving.


It is a 50 minute podcast. You can listen on Spotify and Apple podcasts.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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07 Oct 2022, 9:17 pm

Not a bad listen at all. The Autistic guy they interviewed did a great job explaining how much of our community feels about ABA. My two gripes are 1) no mention of alternatives to ABA such DIR/Floortime and 2) that Singer woman.


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ASPartOfMe
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24 Oct 2022, 10:23 am

A companion article to the podcast takes an exhaustive look at the controversy starting with the history of ABA and interviews with people on many sides of the issue.

How a therapy on seen as a victory for Autistic kids has come under fire as abuse

Quote:
When parents first heard about Applied Behavior Analysis (ABA) in the 1990s, it felt like a lifeline — for both them and their autistic kids.

The therapy was individualized and time-consuming — to the tune of 40 hours a week — and it needed to be delivered early in a child’s development.

Suddenly parents were seeing positive results. For some, it offered the promise of normalcy for their kids; for others, the humbler goal of making their family lives more manageable.

It was also expensive — so parents lobbied to have it covered by insurance or schools. By the 2010s, ABA became a standard treatment for kids with autism.

But over the past few years, that first generation of kids to receive intensive ABA has grown up — and they’re telling a different story.

Instead of being a key that unlocked their freedom — and that unlocked their brains from the “confines” of autism — many have criticized ABA as harmful and even abusive, calling it “conversion therapy for autistic people.”
ABA practitioners and experts have defended the therapy, saying that they’ve seen major changes for the better, and that the progress it offers outweighs its potential for damage. But self-advocates aren’t convinced — with some saying that, with other therapeutic options available, there’s no reason to keep ABA at all. Maybe, they say, it should be scrapped altogether. Maybe it’s simply rotten to the core.

Alison Singer knew early on that something was wrong with her daughter, Jodie.
“She had troubles from the time she was born,” Singer said.

Jodie, who was born in 1997, wasn’t eating or sleeping much, and she cried constantly.

“And I remember asking my mother, ‘Did Steven have these issues?’” Singer said. “And she said ‘No.’ And so I said, ‘Well, at least it’s not autism.’”

Steven is Singer’s older brother, who has profound autism along with intellectual disabilities. He was diagnosed in the 1960s — the dark ages when it came to autism.

“My mother was blamed for my brother’s autism,” Singer said. “Back then, we thought bad parenting was the cause of autism. My mother was told by a reputable doctor that she was too cold to properly bond with her son, and that’s why he retreated into the world of autism.”

“Back then, children with autism were institutionalized,” Singer said. “There was no IDEA Law [Individuals with Disabilities Education Act]. He had no right to go to school. He was considered not able to be educated. And so why would you send him to school

Singer’s brother, who’s 58 now, is non-verbal, and as a child was prone to aggressive and self-injurious behaviors. He ended up, like so many autistic people of his generation, institutionalized.

All of this was on Singer’s mind when her daughter Jodie first showed signs of developmental issues — and when she was eventually diagnosed with autism. By this time, it was the late 90s — decades past the age when autistic kids were routinely institutionalized — but Singer still feared for her daughter’s future. She worried Jodie would be forced into the kind of life her brother had had — no schooling, no independence, no job, no real future.
But Singer was determined to fight.

“So when Jodie was diagnosed, of course, being a crazy type-A mom, I started talking to parents and I went online,” she said. “The internet was pretty rudimentary back then, but I was able to find some information. And all of the parents at that time were reading a book called ‘Let Me Hear Your Voice.’”

It’s hard to overestimate how big of an impact “Let Me Hear Your Voice” had. It was published in 1993, around the start of what the media had termed the “autism explosion.” Back then, the diagnosis was still associated with either severe disability, or best-case scenario, Rain Man-type savantism. Either way, an autism diagnosis meant little hope of a “normal life.”

But then “Let Me Hear Your Voice” came on the scene. In it, author Catherine Maurice describes receiving her daughter’s (and later, her son’s) “devastating diagnosis” of autism, and the years they spent searching for a treatment.

They found their salvation in ABA — a new (to the wider public) form of therapy that was rewriting the possibilities of autistic children’s lives.

The result, Maurice wrote, was that her daughter and son “have fully recovered and are now considered ‘normal’.”
The book spread like wildfire among the parents of autistic children.

According to early advocates of ABA, it had the power to make children on the autism spectrum “indistinguishable from their peers.”

Singer started Jodie on ABA shortly before her third birthday, and she says the results were undeniable.
“We saw some changes almost immediately after a few sessions,” she said. “And I was like, ‘Wow, this is magic.’”

The ABA therapist potty-trained Jodie in a weekend — something Singer had been struggling with for months — which meant that Jodie would now be able to go to nursery school.

Maybe most importantly, ABA taught Jodie how to communicate.

Brian Rodewald is pacing back and forth across his hotel room in Romania.
“If I’m walking, then that means mentally that I have escaped a bad situation because I’m on the move and free, because I can move around,” he said, “unlike in fourth grade.”

Rodewald’s in the middle of a three-week backpacking trip to Europe. He’s an avid traveler — on this trip, he’s already hit up England, is spending a few days in Romania, and then heading to the Netherlands. He talks for a while about Romania’s public transportation — it’s one of his favorite things to explore when he goes to other countries.
“That’s one of the positives about traveling solo,” he said. “I get to form my own decisions on what to eat, where to go, and how to enjoy the area.”

Freedom is a big deal to Rodewald — because for a lot of years, it’s something he says he didn’t have, thanks to years of ABA.

Rodewald is 28 now — a computer programmer and software engineer who got laid off when COVID-19 hit. But even though he’s years past ABA, he says he still lives with the trauma of it every day.

It’s one of the reasons why he carries around his favorite comfort items wherever he goes: a stuffed octopus and a stuffed cat.

“They’re with me all the time,” he said. “I can talk to beings that aren’t people, and they don’t yell at me as much as some other people at school did.”

Rodewald, who grew up in Arlington, Virginia, first started ABA in 1999 when he was in pre-K, and continued with it off and on for about 10 years. It was part of an initiative by his school district to “mainstream” autistic kids — put them in regular classrooms as opposed to separate ones, where a lot of them would languish, falling further and further behind their peers.

“It was seen as a very strong success story — as I was one of the first autistic people to be promoted from my elementary school to my middle school who was doing work beyond my grade level,” Rodewald said.
The goal of ABA was to keep Rodewald at pace with his peers in just about every way — and to modify his behavior.
One of the most common lessons Rodewald would get over the years was about eye contact.

“I got too, too, too many lessons on eye contact every year,” he said. “It was boring. And I told myself I already knew how to do it. Why do I have to do it again and again and again?”

“I spend too much energy trying to focus on looking at the person instead of listening to the content of what they have to say,” he said.

But even more than forcing Rodewald to establish new behaviors, like eye contact, he says ABA was about %stopping certain behaviors. One of the biggest rules — and for him, the hardest to follow — was staying in his seat.

“They wanted me to sit down in one seat for hours, and I can’t do it,” he said.

Walking around, moving his body, helps Rodewald feel calm and focused. It’s part of a common autistic behavior called “self-stimulating” or “stimming.”

Sitting still, Rodewald felt like he’d jump out of his skin. But at school, the teacher and his ABA therapist told him he wasn’t allowed to move around. Physically and mentally, ABA felt constraining to Rodewald — like his every move, his every natural impulse, was being judged — and judged wrong.

When clinical psychologist Ivar Lovaas first started working with autistic children in the 1960s, little was known about what caused autism, or how its more disabling effects could be treated.

The prevailing theory at the time — rooted in Freudian ideas — was that emotionally cold parents caused their children to retreat into autism, and that psychotherapy could help treat it.

It was an idea Lovaas himself believed, until a colleague introduced him to behavior analysis — an approach derived from the work of psychologist BF Skinner that takes a systematic approach to understanding the causes of behavior, and how it can be changed.

Indeed, “normalcy” seemed to be Lovaas’ goal, which might explain why stimming was one of his pet peeves. He called it “garbage behavior,” and thought that it prevented autistic kids from learning — not to mention it marked them as obviously autistic.

Lovaas would go to great lengths to stop undesirable behaviors. In the early days, that could mean ignoring, shouting at, slapping, or even delivering small electric shocks to kids.

But the approach also included rewards, like juice or M&Ms. It was all based on a technique called operant conditioning, which uses reinforcement or punishment to encourage or discourage behaviors.

Lovaas built these ideas into a highly structured technique that was dubbed “discrete trial training.” It involved intensive interaction with a therapist, who broke down complex skills into small, “discrete” steps that were individually taught and reinforced — often again, and again, and again.

Wendy Ross, a developmental and behavioral pediatrician who runs the Center for Autism and Neurodiversity at Jefferson Health in Philadelphia, describes what discrete trial training looked like.

“There was a child sitting down with an individual in a cubby kind of space with no distractions,” she said. “And there was a task and there was data. And for example, it could be, ‘You’re going to look at me for 10 seconds. Every time you look at me for 10 seconds, you get an M&M and we’re going to do that 10 times, and then we’re going to move to another goal. And then we’re going to go back to that and we’re going to keep drilling you one-on-one, and we’re going to give you external reinforcers every time you do what I think you should be doing.’”

By the 90s and early 2000s, when Brian Rodewald was in primary school, mainstream ABA had shifted. Instead of food, rewards centered around prizes, like stickers or games, or letting the kids do something they liked. Punishments involved taking those things away or withholding attention.

Rodewald’s performance and progress were tracked on something called a behavior sheet — a daily form that kept track of how well he was adhering to behavioral requirements in a very visible, and sometimes public, way.
Among the criteria Rodewald was judged on: whether he was making eye contact or not, whether he was “calm” (staying in his seat and refraining from stimming), whether he’d raised his hand before speaking, whether or not he was focusing in class. Something Rodewald says he often got in trouble for was reading books during class, though he says it actually helped him focus.

The behavior sheets were like a daily report card — one that monitored Rodewald’s behavior minute by minute, hour by hour. Every day, he’d receive checks or frowny faces for his performance, and then have to get it signed by his parents.

“If I didn’t send home the behavior sheet, I would have gotten a frowny face the next time and a stern talking-to by the teacher,” Rodewald said.

Rodewald’s parents had to sign his behavior sheets every week. He remembers one time swiping his sheet and filling it with check marks to show that he’d passed his eye contact and stim suppression.

“And the teacher even noticed and berated me publicly here in front of the whole class,” Rodewald said.
For Rodewald,thiswas the worst part.

I knew the teacher was not focused on the lesson — they were focused on trying to control me in one way or another,” Rodewald said. “And that very much demoralized me.”

It also ingrained something very powerfully in Rodewald’s mind — that he, and all of his natural instincts, were fundamentally flawed.

“I felt like something was wrong with me,” he said, “because the behavior sheet told me something was wrong with me.”

This went on for years. And then suddenly, without warning, when Rodewald was in middle school, the behavior sheets stopped. He says there was no big announcement — no reason given as to why this was happening now.
“I tried to celebrate, but I couldn’t,” Rodewald said, “because I feared they would tell me — or I could remember they would tell me — that a behavior sheet could be reintroduced at any time.”
That’s true even now.

Despite that lingering fear, Rodewald’s life got better from there on out. By high school, the worst of the ABA system was over — no more behavior sheets, and he got to work at his own pace without a minder looking over his shoulder.

None of the people who have ever given me a behavior sheet accompanied me to any of the 24 or more countries I’ve been to,” he said. “I’ve never gotten a behavior sheet when I’m in a foreign country. And that’s why I felt safe — I feel safe right now in Romania.”

But the feeling never lasts. That, for Rodewald, is the legacy of ABA. No matter where he goes, he can’t escape this fear that someone somewhere is going to pop out and tell him he’s doing something wrong.

The trauma of ABA has not only shaped Rodewald’s behavior and self-esteem, it’s imprinted itself on his nerves in the form of Complex PTSD, or C-PTSD.

“Needing to find the exit route to anywhere, needing to find the exit route from the situation compulsively is my biggest feature of C-PTSD,” he said.

It’s the first thing Rodewald thinks of when he gets to a new place — even riding trains or buses. Where’s the closest exit? How can I escape?

It’s been more than 15 years since Rodewald was subject to ABA. Since then, he’s managed to move beyond it in some ways — but not all.


The backlash against ABA mirrors a major shift in the autistic rights movement.

One of the leading voices pushing for this change is Emma Dalmayne, a vocal self-advocate, writer, and the founder of the nonprofit Autistic Inclusive Meets, an autistic-led organization based in London.

“We don’t need to be fixed because we’re not broken,” Dalmayne said. “There isn’t a cure. There isn’t a treatment that you can get that will cure autism, because we’re not diseased. We’re not injured. We’re not at fault in any way.”

Dalmayne is both the parent of autistic children, and autistic herself — something she discovered in her late 30s, when her son was being assessed for autism. That’s also when Dalmayne first learned about ABA. To find out more, she reached out to autistic teens and adults who’d gone through ABA — and what she heard was not good.

“You take a child who’s highly vulnerable already and has a communicational difference, and you tell them that they cannot flap their hands, that they can’t self-stimulate, that they can’t regulate, they’re forced to make eye contact,” Dalmayne said. “And you’re teaching them that their autonomy is not important as long as they satisfy the therapist sitting opposite them; as long as they comply to the adult sitting opposite them. Then they get something nice; they get a treat, or they get their iPad for two minutes, and then it gets taken away again to motivate them and reinforce the desired behavior the therapist wishes to see. So if you think about it, what is that teaching a child? It’s teaching them that their own comfort doesn’t matter as long as the adult’s happy.”

ABA’s system of rewards and punishment is a frequent target of criticism. But alongside passionate denunciations like Dalmayne’s, come defenses — like that ABA is just another version of how most people parent their kids — giving them rewards when they behave, and timeouts when they don’t.

But Dalmayne says ABA is fundamentally different from that general parenting framework.

“ABA has a specific agenda behind it,” she said. “The agenda is compliance.”

With regular parenting, Dalmayne says, reinforcement is used to establish boundaries.

“But with ABA you’re using bribery, you’re using manipulation, you’re using reinforcers, you’re using planned ignoring,” she said, “because they’re not complying with what you want them to do. So that, I’d say, is a big difference between mainstream, so-called ‘normal parenting,’ and a compliance-driven therapy. I wouldn’t even call it a therapy — I’d call it a training program.”

And then, there’s one of the biggest critiques of ABA, from a scientific perspective — as it turns out, despite all of ABA pioneer Ivar Lovaas’ exciting, groundbreaking studies, the evidence isn’t as solid as everyone once thought.
“It turns out that some of the data that supported these revolutionary effects were fabricated,” said autism clinician and researcher David Mandell, who directs the Center for Mental Health at the University of Pennsylvania School of Medicine.

“So when you look at the first randomized trial that Ivar Lovaas published, where he said that half of the autistic youth who received ABA services, that their teacher couldn’t pick them out of a lineup, it’s not really clear that those data were accurate or that that was a good outcome.”

Later audits discovered that of Lovaas’ 58 studies on ABA, only one was of high quality. While there have been a number of studies on ABA since then, several have been conducted by people who have a stake in the success of ABA — and not many of them are randomized controlled trials, which are considered the gold standard of research.
There have been a few studies over the past decade that have backed up the effectiveness of ABA, but a lot of holes remain. For example, there aren’t a lot of well-controlled studies that tell us what kinds of kids are good candidates for ABA — which is a major problem considering the huge range of disabilities that Autism Spectrum Disorder covers
.

When Pablo Juarez first saw ABA in action, he was amazed.

Juarez went on to become a behavior analyst himself, and today is the co-director of the Autism Institute at the Vanderbilt Kennedy Center in Nashville, as well as the director of behavior analysis for the Vanderbilt Kennedy Center and the Division of Developmental Medicine at Vanderbilt University Medical Center.

He was someone who believed firmly in the power of ABA to change lives. He’d been aware since graduate school of critiques of ABA. But it wasn’t until around eight years ago that Juarez saw a spike in online opposition that prompted his team at the Autism Institute to begin studying negative experiences with ABA.

“I started to see validity in it,” Juarez said. “I mean, some of the complaints out there about what ABA practice looks like at times is absolutely true.”

Juarez says it’s true, for instance, that not so long ago, it was common to make kids go through 40 hours a week of ABA — even some who didn’t require high levels of support.

Another major complaint was ABA’s emphasis on compliance and conformity.

“When I ask you to do something, you need to do it,” Juarez said. “And I think that for sure can be traumatizing if you don’t feel like you have the ability to be autonomous or to self-determine your own behavior or to self-advocate. So sometimes during those drills self-advocacy wasn’t honored. So, I’m tired. I need a break. Or behavior that showed us this person is not interested in doing this anymore. We would just keep going and prompting — we being behavior analysts of the past. And that can be really, really challenging and certainly upsetting.”

Part of what made these sessions so grueling was the excessive focus on repetition.

Melanie Pellecchia, a clinical psychologist and assistant professor in the Center for Mental Health at the University of Pennsylvania, had a similar experience to Juarez.

Pellechia was amazed at how quickly ABA was able to make a difference.

Pellechia ended up getting her masters in Applied Behavioral Analysis, and then her PhD in psychology — all so she could bring techniques like ABA to more kids who needed help.

It wasn’t until around five years ago that she first remembers reading criticisms of ABA on social media. She saw comments that called ABA abuse, even torture; that said it had given them PTSD; that called it conversion therapy for autistic people; that said all it does is teach them to mask pain so that they don’t bother their neurotypical peers.
By that time, Pellecchia had spent years delivering ABA, and she was distraught by what she was reading.

“I think just the idea of it being abusive, certainly was something that hit me in the gut,” she said. “I think going into this field to help children and families, and then seeing those kinds of treatments that we used and that we know helped lots of children and families, be described as abusive, certainly I think was hard to hear.”

Pellecchia sat with those critiques, and a few years ago, she gave a talk at a conference called “Is ABA passe?” In it, she described thinking back to a young patient she called Davey, who she remembers seeing crying when she’d pull up to their house — and it not bothering her at the time. Kids don’t always like what’s good for them, she thought, like going to school or eating their vegetables.

“And so that was sort of the way that we were trained to think about those things,” she said. “Like, ‘It’s okay if he’s upset because he’s learning and it’s for his benefit.’ And we had a ton of data that showed that he was making progress; him and all of the other kids that we were working with were learning really important skills that were improving their daily lives.”

Now, knowing what she knew about so many kids’ experiences, Pellecchia wondered: Were those gains worth making kids miserable — even traumatized?

As for the original ABA goal of “making autistic kids indistinguishable from their neurotypical peers”?
“It certainly should not be a stated goal of ABA,” Pellecchia said. “And I think if that is a goal that anyone has, that would be a red flag.”

One of the most important shifts, Ross says, is how modern ABA thinks about behavior — not as something that needs to be changed, but as a source of information.

“What I would call contemporary ABA is really understanding behavior,” she said.

Understanding, she says, that especially for children who aren’t able to speak, behavior is itself communication.

But how many practitioners have actually discarded the old ABA for the new? Have we made a widespread, wholesale shift from old-school ABA to the new, more play-like, kid-centered ABA?

“No — and it has nothing to do with ABA, per se,” said David Mandell, who directs the Center for Mental Health at the University of Pennsylvania’s School of Medicine. “It has to do with the fact that we suck at making large-scale change in community practice. And we publish these papers, and we develop these programs, and we do these randomized trials, and we put them in academic journals, and we expect that that’s going to result in widespread community change. And it doesn’t. It never has.”

That’s partly just because of the practical difficulties instituting major changes. But one of the other big problems, Mandell says, is ABA’s PR problem.

“That’s one of the big challenges we have with ABA,” he said. “The name itself has become so stigmatizing and so polarizing. We’ve in some ways come to an impasse because of ABA’s deservedly poor early reputation.”
Mandell says ABA needs to renounce that history — especially the early reliance on punishments like yelling, hitting, and most controversially electroshocks, which are still used in a notorious residential school in Massachusetts called the Judge Rotenberg Educational Center.

Juarez says, more progressive pockets aside, the field as a whole has failed to engage the community in true conversations about how to improve ABA.

But even aside from converting hearts and minds, there are big, structural changes that need to happen if ABA is to see a widespread transformation. For instance, Juarez says, ever since autism funding mandates started providing coverage for ABA, private equity firms have moved into the field.

“And when private equity gets involved, at the end of the day, it’s about the bottom line and about making money,” he said. “And that certainly can and does taint quality.”

These days, a growing number of ABA therapists are becoming accredited through online training programs that not only face quality issues, but have failed to adopt the kinds of changes Juarez and his team are advocating for.
Mandell named three other changes that are needed to transform ABA. First, the field needs to validate its practices through large-scale, rigorous, independent, randomized trials; it needs to look at potential long-term harms of ABA; and it needs to make sure that its interventions are scalable in community settings.

In the meantime, it remains difficult for many autistic self-advocates to believe that ABA is capable of change — or even worth trying to change.

“ABAI still endorses a school (the Judge Rotenberg Center in Massachusetts) that uses the electroshock systems on children,” Brian Rodewald said. “Therefore, at best, ABAI does nothing to stop abuse which occurs under the ABA name, and at worst, ABAI endorses electroshock.”

Activist Emma Dalmayne was also skeptical.

“The goals are still the same — forcing an autistic child to fit into mainstream society no matter the trauma it causes,” she said. Dalmayne added that, from what she’d heard, forced eye contact is still strongly encouraged, and stimming is only allowed as a reward once a task is completed.

She also questioned whether therapies that are called ABA are truly ABA.

“Many ‘ABA’ providers are using play therapy and other child-led therapies and calling it ABA to get it funded,” she said. “True ABA will still use reinforcers, planned ignoring, punishments, and motivators.”

Dalmayne says one of the problems is that some ABA practitioners scare parents into believing they have no alternative.

A lot of arguments about ABA center around some of its more superficial goals, but board-certified behavior analyst Jennifer King says ABA techniques can do a lot more — even save lives.

King specializes in working with children, many of them autistic, who have feeding difficulties.
It’s common, King says, for autistic children and adults to have extremely limited and sometimes unhealthy diets.

Many kids also engage in severe food refusals whenever their parents try to introduce healthier options like fruit or vegetables.

“They may engage in aggression, self-injury, push the food away, turn their heads, and then the parents give up,” King said. “And then the child has learned that this is an effective way to have foods that they don’t prefer removed from the meal, and then their diet becomes more and more restricted.”

This can result in serious health problems, including anemia, scurvy, obesity, limited growth, diabetes and more. Sometimes, the problems get so bad that children are put on feeding tubes.

Including children like the ones King is working with in the debate over ABA introduces complicating questions. Is it acceptable to subject children to something they may later feel violated their autonomy, maybe even traumatized them, if the stakes are this high? What if you’re helping a kid who is unable to speak [to] communicate for the first time? Or you’re stopping a child from engaging in self injury? Or you’re helping a kid who’s on a feeding tube be able to eat for themselves?

King says one of the problems she has with many critiques of ABA is that they come from a very specific population.
“Those people who are able to advocate and who are able to criticize ABA obviously have very good language skills,’ she said. “They may be able to have a job. They may be able to take care of themselves socioeconomically. They maybe have had access to more therapy. They might have friends because they have this higher level of skill.”
She says their experience is very different from autistic children who have higher support needs.

“An adult with Asperger’s, to me, seems more like me than a child with severe autism who can’t talk, who’s engaging in severe, self-injurious behavior, who may be causing tissue damage, who may have lost their eyesight because of head-banging or eye-gouging,” King said.

It’s a balance, weighing the good against the bad. The problem, as King points out, is that a lot of the autistic people who stand to benefit the most from ABA are the ones who literally aren’t able to speak up about their experiences. And King worries that their needs are being ignored in this fight over ABA.

But some of their parents are speaking up, including Alison Singer, co-founder and president of the Autism Science Foundation, whose brother and daughter Jodie both have profound autism.

“I think the criticism of ABA comes from very high-functioning autistic adults,” Singer said, “and my feeling is that if you are high functioning enough, if your IQ is high enough and your verbal skills are strong enough for you to articulate a nuanced criticism of the philosophy of ABA and the methodology behind ABA, then you don’t really need ABA.”

The problem, Singer says, is that the term “autism spectrum disorder” has gotten hugely broad, ever since the Diagnostic and Statistical Manual of Mental Disorders (DSM) eliminated sub-categories of autism like Asperger’s and Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS) in favor of a single umbrella diagnosis.

“I think one thing that has happened because of the broadening of the diagnosis is that very high-functioning individuals who are diagnosed with autism spectrum disorder try to speak for the entire community,” Singer said.
While ABA may not have been right for them, Singer said, they shouldn’t try to prevent everyone from having access to ABA.

In an email, advocate Emma Dalmayne objected to Singer’s call for a return to more specific labels, and to her insistence on the utility of ABA.

“ABA is harmful to ALL autistic people,” Dalmayne wrote. “Being able to offer an opinion on ABA as an autistic does not mean we are ‘high-functioning’. There are adults on social media who offline are often non-speaking, require 1.1 or even 2.1 care and will not ever live without some level of support. [Singer] would class these people as ‘low-functioning’ and in need of ABA. That is the harm and misconceptions functioning labels bring.”

Brian Rodewald added, “There are growing groups of non-speaking adults (and parents of non-speaking children) who are fierce critics of ABA for the same reasons. And many of ABA’s most astute critics are other people with intellectual or developmental disabilities.”


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman