Thread by @shannonrosa

Let’s talk about Why No Autistic Child Should Be in ABA Therapy. I am coming at this from the perspective of a parent whose autistic son is an older teen. Regrets, I have a few. And so we need a thread!

Also, you won’t need to unroll, article is here: thinkingautismguide.com/2020/10/why-no…
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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…” 2/

…then urged to place young autistic 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 autistic children by making them "indistinguishable from their peers.” 3/

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 autistic kids in ABA. As I did. 4/

What most parents don't know—& what I only know now after encountering both autistic experiences with ABA & following contemporary ABA research—is that autistic kids need supports & accommodations, not interventions based on non-autistic child development & conversion therapy. 5/

"Early interventions," and especially ABA, are the exact opposite of what young autistic children need to thrive.

#BetterWaysThanABA
#neurodiversity

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Per autistic parent @AutisticEnough: "I’ve heard many parents say their autistic kids are 'rule-followers' & 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.” 7/

Autistic children need their parents to understand that autistic "behaviors" usually have rational origins, per @AnnMemmott on "Behaviour Analysis, The Autistic Way”: thinkingautismguide.com/2019/05/behavi… 8/

Note: 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 perceive this as irrational punishment. 9/

And autistic 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: thinkingautismguide.com/2016/08/when-a… 10/

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. 11/

Further investigation shows "limited evidence" that ABA improves cognitive or adaptive skills (pubmed.ncbi.nlm.nih.gov/32686642/), and that ABA's foundational repetitive drills are counterproductive for autistic learning styles (spectrumnews.org/news/repetitio…) 12/

Analysis also shows one of ABA proponents' most common claims—that the therapy is evidence-based—is riddled by conflicts of interest. See @KristenBott’s research: thinkingautismguide.com/2020/05/confli… 13/

Why don't more parents of autistic kids question ABA therapy? Probably because they don't know any better. I certainly didn't.

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Yes, I was aware of how awful the origins of ABA are, and that founder Ivar Lovaas literally tortured his child subjects with electric shocks. I knew that Lovaas believed that in "forcing [the autistic child] to act normal, he can push the child toward normality.” 15/

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.” 16/

But my son’s ABA was *still* drill-based conditioning, focused on getting him to do tasks because an adult said so, rather than understanding how helearned best as an autistic individual—or why goals like learning to make eye contact make no sense for most autistic people. 17/

Unfortunately, I wasn't confronted with the case against ABA until my son until was a teen. More worryingly, my ignorance is far from rare. Most research and writing criticizing ABA is either academic, or disability rights-oriented, & thus not on your average parent's radar. 18/

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. 19/

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.”

sentex.ca/~nexus23/naa_a… 20/

Most parents of autistic kids don't know current research on ABA techniques endorses "motivating" children by withholding food or drink until they are desperate enough to comply, as (again) @AnnMemmott highlights:

https://twitter.com/annmemmott/status/1310846741110022144?s=21

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Parents 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. 22/

Parents are also unlikely to encounter autistic people who can discuss their ABA experiences (see: autisticadvocacy.org/wp-content/upl…), and so parents don't understand that ABA may be setting their children up for trauma and dehumanization, rather than useful learning. 23/

And while autistics endorsing ABA do exist, they tend to show internalized ableism: preoccupied with mainstream social norms, dismissive of autistic processing & perception, & unaware that autistic people don't require ABA to learn skills like toileting or how to take turns. 24/

Is it then any wonder that—questionable adoption motivations aside—"rehomed" autistic preschooler Huxley Stauffer was both placed in & 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? 25/

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. 26/

#BetterWaysThanABA #neurodiversity

…parents need understand that how the way autistic brains work can make standard intelligence and adaptive scores irrelevant to their child's quality of life or “outcome.”

All this will help parents understand why ABA is inappropriate for autistic learning. 27/

Parents need to find autism professionals who understand that autistic children find prolonged interactions with non-autistic humans exhausting—instead of invading the space of autistic kids for stretches of time their peers would never be expected to tolerate. 28/

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. 29/

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. 30/

Personally, I saw my son gain some skills, & 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. 31/

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. 32/

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… 33/

…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. (Mel Baggs wrote about this crucial self-advocacy: thinkingautismguide.com/2019/02/the-me…) 34/

So, be wary of parents who feel victimized by having autistic kids yet also embrace ABA, who can't see that when autistic kids in ABA still have “behaviors," that is usually because those children are justifiably distressed, and have never been given appropriate coping tools. 35/

Be deeply skeptical when ABA parents “give up" on their older autistic kids since they “tried everything,” and their children are still autistic—& of stories that blame the child's autism, instead of inexplicable tragedy or human fallibility, in the worst case scenarios. 36/

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.

#BetterWaysThanABA #Neurodiversity 37/

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…” 38/

@Cal__Montgomery “…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. 39/

If we’re going to have "early intervention” autism 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. 40/

For a timely example, autism researchers can learn a lot from pandemic hero Dr. Fauci and his past experience first ignoring and then embracing AIDS activists (newyorker.com/magazine/2020/…): Real progress doesn’t come about until you work WITH the community you’re trying to help. 41/

There are fundamentally flawed assumptions built into ABA training. And most ABA 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 dedicated themselves to are so flawed. 42/

If "early intervention” autism professionals truly want to serve autistic children, then they need to transition to better ways than ABA to guide our autistic kids, ways that don’t crush those children's spirits and hearts. 43/

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. 44/

My son’s communication & requests and boundaries must be respected. He will set his own visual schedule, & gets breaks when he needs them. Due to this shift, he now trusts the adults in his life to listen to him, & have his back. He is, without a doubt, a happier person now. 45/

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… 46/

…and instead help parents learn best practices for supporting and accommodating autistic children. Until this happens, generations of our community’s autistic kids will grow up believing that how they react to the world is wrong, rather than *different*.

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As autistic writer @phineasfrogg 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.”

#BetterWaysThanABA

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