Wednesday, October 21, 2020

Why No Autistic Child Should Be in ABA Therapy

A visual icon with black text at the top reading, "no flapping  hands" above an illustration of a person flapping their hands, crossed by a black diagonal line.
[image: A visual icon with black
text at the top reading, "no flapping 
hands" above an illustration of
a person flapping their hands,
crossed by a black diagonal line.]
Shannon Des Roches Rosa

Professionals usually tell parents of newly diagnosed autistic children that it is "critical" to put those children in early intervention therapies like Applied Behavioral Analysis (ABA). Parents are warned about "missing a developmental window," then urged to place young children in intensive therapy for up to 40 hours per week. We are told that these therapies are justified by decades of research, and that they will save our children by making them "indistinguishable from their peers."

If parents are new to disability, plus in full-blown panic mode due to relentless cultural negativity about autism—as I was—they may become desperate for guidance from "experts." They also tend to do exactly what they are told: They put their kids in ABA. As I did.

What most parents don't know, and what I only know now after encountering both autistic experiences with ABA and following contemporary ABA research, is that autistic children need supports and accommodations, not interventions based on non-autistic child development and conversion therapy. "Early interventions," and especially ABA, are the exact opposite of what young autistic children need to thrive. As autistic parent Carol Greenburg notes, "I’ve heard many parents say their autistic kids are 'rule-followers' and bitten my tongue wanting to ask if they thought it’s because we’re naturally rigid, or because we’ve been undergoing compliance training for as long as we can remember."

Autistic children need their parents to understand that autistic "behaviors" usually have rational origins. That when we allow ABA therapists to "extinguish" flapping, echolalia, or other forms of autistic self-regulation to make a child appear less autistic, but without understanding why the child does these things, autistic children perceives this as irrational punishment. That children who act like they are in distress usually ARE in distress, and instead of teaching them to suppress that distress we need to find the source, be it pain, illness, sensory overload, or lack of functional communication options.

Research clearly shows how ABA can traumatize autistic children, instilling, "Compliance, learned helplessness, food/reward-obsessed, magnified vulnerabilities to sexual and physical abuse, low self-esteem, decreased intrinsic motivation" and other worrying traits. Further investigation shows "limited evidence" that ABA improves cognitive or adaptive skills, and that ABA's foundational repetitive drills are counterproductive for autistic learning styles. Analysis also shows one of ABA proponents' most common claims—that the therapy is evidence-based—is riddled by conflicts of interest.

Why don't more parents of autistic kids question ABA therapy? Probably because they don't know any better. I certainly didn't. Yes, I was aware of how awful the origins of ABA are, and that founder Ivar Lovaas literally tortured his child subjects, bellowing in their faces and giving them electric shocks. I knew that Lovaas believed that in "forcing [the autistic child] to act normal, he can push the child toward normality." 

But my son's ABA wasn't like that: It was a new kinder, gentler approach, incorporating methods like Pivotal Reponse Treatment (as seen on Supernanny) and completely without any "aversives." But however it was recast, it was still drill-based conditioning that focused on getting my son to do tasks because an adult said so, rather than understanding how my son learned best as an autistic individual—or indeed why goals like learning to make eye contact make no sense for most autistic children. 

Unfortunately, I wasn't confronted with the case against ABA until my son was a teenager. More worryingly, my ignorance is far from rare. Most research and writing criticizing ABA is either academic, or disability rights-oriented, and thus not on your average parent's radar. Dominant autism organizations like Autism Speaks, to which parents new to autism are often referred, describe ABA as a "'best' practice treatment." Criticism of ABA rarely surfaces in mainstream media—and if it does, concerns are part of a "both sides" discussion, at best.

Most parents, therefore, have no idea that autistic researcher Michelle Dawson decries ABA's premise as, "if autistic children must be treated ethically then they will be doomed." They don't know current research on ABA techniques endorses "motivating" children by withholding food or drink until they are desperate enough to comply. They don't realize that ABA "manifests systematic violations of the fundamental tenets of bioethics," nor are they aware that Association for Behavior Analysis International openly endorses techniques both the United Nations and the FDA consider to be torture.

Parents are also unlikely to encounter autistic people who can discuss their ABA experiences, and so don't understand that they may be setting their children up for trauma and dehumanization, rather than useful learning. And while autistic accounts endorsing ABA do exist, they also tend to be works of internalized ableism: preoccupied with mainstream social norms, dismissive of autistic processing and perception, and unaware that autistic people don't require ABA to learn skills like toileting or how to take turns. 

Is it then any wonder that—questionable adoption motivations aside—"rehomed" autistic preschooler Huxley Stauffer was both placed in, and did not "respond" to, ABA therapy? And that ABA may have made his life harder than it would otherwise be as a disabled transnational adoptee? Huxley's story is a caution for parents regarding our expectations for, and treatment of, our autistic children.

How can parents support autistic children without subjecting them to ABA? First, we need to learn about autistic traits, and how the interplay of autistic processing, motor, and sensory factors, and the most compassionate ways to respond, and how the way autistic brains work can make standard intelligence and adaptive scores irrelevant to their child's quality of life or “outcome.” This will help parents understand why ABA is inappropriate for autistic learning.

Next, parents need to find autism professionals who not only understand these factors about being autistic, but who understand that autistic people find prolonged interactions with non-autistic humans exhausting—instead of making nearly every mainstream autism intervention about adults invading the space of autistic children for stretches of time their peers would never be expected to tolerate. Parents also need to learn to be selective about the therapies they do choose: Our kids can indeed benefit from tailored therapies like speech therapy or occupational therapy, as long as those approaches are also respectful of, rather than antagonistic to, being autistic. 

It can be really hard for parents who see their kids progress while in ABA to hear criticisms of an approach that they may consider "the only thing that works." Parents may not believe their kids could learn such skills without being put through drills. Personally, I saw my son learn to pull up his pants and use a visual schedule, and declared ABA a success. But now, years later, I am worried about some of my son's less adaptive tendencies, worry that they may be acquired from his years of ABA, and fret that this is my fault for not knowing any better from the get-go. 

I want parents to consider that, when things are hard, doubling-down with more ABA techniques may make things worse. I want parents to ponder that an autistic child in a meltdown, however provoked, is experiencing just as much stress as parents are, if not more so. But if parents have never been given a framework to recognize their child's communication or experience (ABA supplies neither), if the child hasn't been given the tools to convey to their parents just how how distressed they are, and if as a result the child has probably lost trust in the adults in their life, then any "acting out" is often that child advocating for themselves in the only way they can.  

So, be wary of parents who feel victimized by having autistic children while also embracing ABA. Such people are unable to recognize that when autistic children have "behaviors" even while in ABA, that is usually because those children are justifiably distressed, and have never been given the tools to cope or feel safe in an autism-unfriendly world. Be deeply skeptical of stories from such parents about how they gave up on their older children since they “tried everything,” and their children are still autistic. Stories that blame the child's autism, instead of inexplicable tragedy or human fallibility, in the absolute worst case scenarios.

If we are all going to do right by autistic children, we need to listen to autistic people with first-hand insights about the damage wrought by being mistreated and misunderstood the way ABA and other early interventions do. These are not always easy conversations to have. Consider what autistic disabled advocate Cal Montgomery told me, “We don't actually know what autism looks like in almost any autistics. We know what autism plus trauma looks like. And with respect to the general idea of what autism is, that mostly comes from white, traumatized, boys and men." So not only are we mentally scarring autistic children, but we're not even considering the needs of those who don't fit a stereotypical autistic profile.

We need to talk to autistic people about the effects early intervention had on them. Since my son doesn’t have those kinds of conversations, I spoke with Grace Trumpower, an autistic pre-med college student. When Grace was a young child, their parents were persuaded to put them in an intervention called sensory exposure therapy, which conditions a person to gradually tolerate distressing stimuli. Grace said it was initially fun, but then got distressing. And the therapists not only intentionally ignored that distress, but hid it from Grace’s parents. Grace said that, ironically, the therapy room was full of therapeutic items like noise-canceling headphones and weighted blankets that actually would have helped them cope—but the therapists’ goal was normalizing their clients, not accommodating them.

If we’re going to have early intervention research do right by autistic people of all intersections, we’re going to need participatory research—research done with autistic people, rather than on autistic people. Participatory research is already a growing movement in social and mental health autism research. It’s time for behavioral autism research to follow suit. And for a timely example, we can learn a lot from pandemic hero Dr. Fauci and his past experience first ignoring and then embracing AIDS activists: Real progress doesn’t come about until you work with the community you’re trying to help.

There are fundamentally flawed assumptions built into ABA practitioners’ and supervisors’ training. Most of these professionals have a sincere desire to help underserved children, which is why it can be difficult for them to comprehend why the philosophies they've poured their educational and professional souls into are so flawed. And while I've encountered many ABA "techs" who are both undertrained and under-committed (euphemism), some truly wonderful people have not only worked with my son, but taught both of us a lot—despite the questionable framework in which the learning occurred. However if early intervention professionals truly want to serve autistic children, then they need to transition to better ways to guide our autistic kids, ways that don’t crush those children's spirits and hearts. 

I can't undo the years my son spent in ABA, but I am also now upfront with anyone who works with him about exactly why I do not allow ABA-type approaches. I let them know they may not demand eye contact, quiet hands, or sitting at a table for intolerable stretches. He may not do pointless busywork drills. His communication and requests and boundaries must be respected. He will set his own visual schedule, and gets breaks when he needs them. Due to this shift, he now trusts the adults in his life to listen to him, and have his back. He is, without a doubt, a happier person now.

If we want autistic children to have the kind of lives they deserve, then professionals need to stop promoting stress-triggering ABA and early intervention therapies that encourage parents to see their child as broken and incapable of learning any other way, and instead help parents learn best practices for supporting and accommodating autistic children. Until this happens, generations of our community's kids will grow up believing that how they react to the world is wrong, rather than different. As autistic writer Finn Gardiner tells it, "I had a bunch of stims trained out of me and my speech therapist was always giving me rewards for eye contact and ‘quiet hands.’ It took me until I was an adult to be comfortable with visible stims again."