ABA and a Autistic alternative

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Daniel Wilkenfeld first heard about Applied Behavioral Analysis, a mainstay treatment for children on the spectrum, when his own kid was diagnosed with autism. Something immediately didn’t sit right with him. Applied Behavior Analysis therapy, or ABA, teaches autistic kids behaviors that tend to come more naturally to their neurotypical peers — such as eye contact or completing tasks independently — and discourages behaviors considered disruptive in classrooms and other social settings, such as hand flapping or other forms of stimming. The therapy is intensive, taking hours each day.

“It was quick that the alarm bells went off,” Wilkenfeld says. In addition to his role as a parent, Wilkenfeld is a professor of nursing ethics at University of Pittsburgh School of Medicine and holds a Ph.D. in philosophy. Shortly after his kid received an autism diagnosis, he found out that he, too, is on the spectrum.

It seemed to Wilkenfeld that the goal of ABA wasn’t to help kids be the happiest, most secure versions of themselves — it was to get them to blend in. The therapy, with its structured reward system, seemed coercive to him. He didn’t want to see his child become anyone other than who they were.

“We like their autistic self. We like that they get hyper-focused on stuff,” Wilkenfeld says. “I mean, sometimes it could be frustrating. It's not always fun to play in the same skit over and over again, every day, but that just seemed like who they are. And we didn’t want to try to train them to do something else.”

For years, autistic people have been decrying ABA. Many describe lasting trauma, a sense of low self-worth, and difficulty setting boundaries as a result of the therapy. Meanwhile, medical and insurance providers tout ABA as the most effective out there. For parents of autistic kids, it can be confusing to navigate this fractured landscape. Who are you supposed to listen to?

Wilkenfeld, along with other researchers and advocates, argue that it’s high time we believe the experiences of autistic people — and ask what an “effective” therapy means for autistic kids and adults.

People in favor of ABA will often argue that it gives kids the skills to function better independently and in social situations. By those standards, it works. Spanish researchers pooled the results of 26 different studies on ABA. Their results, published in the journal Clinical Psychology Review found that ABA had medium to large effects in intellectual functioning, language, daily-life skills, and social functioning.

But autistic advocates point out that these standards don’t take into account the mental health of the people going through ABA. They say ABA encourages “masking,” or changing one’s behavior to appear more neurotypical. Autistic people who mask are at a higher risk of depression, anxiety and suicide. And some research suggests that the therapy is associated with Post-Traumatic Stress Disorder (PTSD).

Adults who went through ABA as children report being forced to endure sounds or sensations they experienced as overwhelming or painful. Some had food and comfort objects withheld until they completed a task.

“When you tell people their sensory experience is not that bad, when you make a child repeat something over and over, that’s abusive,” says Julie Roberts, a speech and language pathologist and the founder of the Therapist Neurodiversity Collective.

Roberts, like Wilkenfeld, sees ABA as fundamentally coercive. She worries that training kids with rewards to do things that other people want them to do — the some of which they may not be comfortable with — sets them up for future abuse.

“It’s no wonder these children grow up and are at a higher risk of exploitation,” Roberts says. Autistic children are more likely to be sexually, physically, and emotionally abused than their neurotypical peers.

For many kids, ABA isn’t all bad, points out Laura K. Anderson, a special educator and Ph.D. candidate researching autism and inclusion in education. Early this year, Anderson, who is autistic, published a study in the journal Autism in which she interviewed seven autistic adults on their experiences with ABA therapy. Their memories and criticisms were nuanced. These adults were grateful for some of the practical skills they learned through ABA — like how to stay safely on a sidewalk — and for the improvements in language and communication that they gained.

None of our participants argued that ABA wasn’t effective in any way, shape, or form,” Anderson says. “That wasn’t their point. Their point was that it was harmful for them.” Anderson’s interviewees recounted being physically manipulated, having preferred items taken away, and an overall loss of agency and autonomy.

After Wilkenfeld’s experience with his own kid’s diagnosis, he began conducting his own research on ABA. He ended up co-authoring an analysis of how ABA fits into the four main tenets of bioethics: autonomy, non-maleficence (the “do no harm” principle), beneficence (doing well by your patient), and justice. In his paper, published in the Kennedy Institute of Ethics Journal, Wilkenfeld argued that ABA violates all four.

His biggest concern was with the principle of autonomy.

hinks about the skills and knowledge that will improve her patients’ quality of life, rather than make those around them more comfortable. Her goal isn’t total independence. “That doesn’t necessarily help their mental health,” she says.

For one, Roberts teaches her patients about neurotypical experiences of their peers, without the expectation of camouflage. “They need to understand that the neurotypical experience may be different,” she says. Roberts also works with her clients to develop confidence — their own sense of an authentic autistic identity. Then, she’ll teach them about healthy boundaries, and skills to avoid victimization, such as the difference between a friend and a bully. There’s no official name for Roberts’ approach, but she likes to call it “neurodiversity-informed” or “trauma-informed” therapy

Roberts acknowledges that it’s not easy to find a therapist who is radically accepting of neurodiversity, especially when many ABA providers use that same language. She suggests interviewing providers on their goals for treatment; the primary one should be improving your child’s mental wellbeing. Red flags to look out for: a therapist who won’t let you sit in on your child’s appointments, or a therapist that asks you to avoid stepping in when you see your child in distress.

Neurodiversity-informed therapy doesn’t guarantee that a kid will be non-disruptive in a traditional classroom setting. It doesn’t guarantee that they’ll be able to live independently — but perhaps that shouldn’t be the goal of any therapy, Wilkenfeld says. “Having society-defined goals of what counts as a valuable life is frequently a mistake.”

Roberts agrees: “We don’t need to be converted into other human beings to maximize the comfort of others.”

Just like with talk of cures, there's a difference between using behavioral analysis to develop a line of communication and using it to train away behavior that makes non-autistic people uncomfortable. There's a difference between curing autism in general and just finding cures and treatments for specific aspects of autism that genuinely are a problem.

Leaving aside ABA, given autism is diagnosed on 3 negative criteria (not associated positive traits for some)-

communication difficulties
restricted & repetitive interests
sensory problems

Which of the 3 would you keep?

It's not an all or nothing thing. I have all of those things, and I wouldn't personally cure any of them. I do support therapy and technology to help us better handle it. But all of those things do have workarounds, and work being done to accommodate other communities tends to already make things easier for those items.

Personally, I am absolutely grateful for the textured strips and auditory crosswalk signals that the city has been installing over the last few years to help the blind and low vision people as they navigate the city. Trying to cross a busy street completely blind because I hit my limit on sight, sound and touch was dangerous. To make matters worse, that usually happens when I'm also nonverbal, which makes asking for help an impossibility. I'm just lucky that hybrid cars and EVs weren't a thing before I learned that I could throw on a pair of sunglasses, put in earplugs and pull a hood over top to cut down on that enough to see.

I do think that there's a much stronger case for more specific challenges like toileting and knowing both when to eat and drink as well. Both of which have nearly killed me at times. But, both of those things also have assistive technology that can help with that as well, so it's not like curing autism is the only way to deal with that either.

Having lived overseas in a place where I could barely speak and couldn't easily read, it's not like I'm not very much aware of how much of a problem it can be to not have the ability to communicate in words. It is a massive pain, but it is also something where there are various solutions that have been developed., None of them are as convenient as being able to just speak, but they do exist.

In other words, I cringe a bit when people think that this is as simple as Level 1 support needs versus Level 3, as both groups aren't necessarily uniformly so throughout their daily living. And I do think there needs to be more honest discussion about the lesser measures that could be taken as curing my autism would mean being able to be out in public walking without fear of being left suddenly blind and nonverbal, but I also likely wouldn't have known that one of the students I worked with needed to be walked to counseling due to being a self-murder risk.

I do genuinely wish there was less ambiguity to this whole debate, but fortunately/unfortunately, a cure isn't likely to happen any time soon, so it largely remains a theoretical concern.

Well its good you have made the best of it, but i don't really see any benefits with my condition. I also fail to see the logic in being against fixing things which are disabling.

Life is short especially for those diagnosed with ASD, all that anxiety & missed opportunities and nothing in return