Unfortunately, thanks to my brain’s lousy ability to keep up with life, I missed an opportunity a few months back to be interviewed for this NPR report on the controversy over ABA as an autism therapy. It would have been great to be quoted in that story, but now I have a different opportunity: to respond to the story in detail.
The report is well worth listening to, because there are some very good quotes, a wide range of opinions from an interesting variety of sources, and a more nuanced conversation than we usually hear about how ABA should change if it’s going to continue to exist. I also found it frustrating to listen to, because it begins and ends with pro-ABA statements from a particularly problematic source. More on that later.
And, as usual, I have wound up writing far more than I anticipated, so I’m going to break this up into multiple posts.
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Let me first draw attention to something very subtle — the unspoken assumptions that underlie this story.
The story opens with a mother discovering that her daughter has autism (the report uses person-first language, which is disliked by most autistic self-advocates but still very common). This woman grew up in the 1960s with a profoundly autistic brother, who, like many disabled people of that time, got no education or therapies and ended up institutionalized. Understandably, the mother feared her daughter would suffer the same fate. At the end of the story, the daughter, now in her 20s, is still profoundly autistic and minimally verbal, but has become a “contributing member of society” — thanks, her mother believes, to ABA.
Framing the story within that narrative reflects an underlying cultural belief that an “unproductive” life (by typical standards) is not worth living, and that people who don’t “contribute” are less valuable. This is part of a much deeper systemic issue. American society commodifies human beings. We warehouse the elderly and the unwell rather than working to include them in daily life. We devalue caregivers, whether for children or elders or disabled people. We devalue the people who need care (even children, who we expect to become “productive” eventually).
These beliefs and practices are not universal. People from other countries and cultures have remarked on these attitudes in American society. How we evaluate and value human lives is a choice.
Respect for a person’s life and dignity should not depend on whether or not that person is “useful”. But for our society to truly accept disabled people for who they are, allowing them to live without shame and oppression, requires a complete paradigm shift.
I know this is deep-dive material. I don’t expect to convert my readers to a new philosophy of human rights in a few paragraphs. So I’ll drop it for now. I just needed to point out that the entire question of how we treat and view people with disabilities is rooted in beliefs that most of us don’t even realize we have.
And when we don’t recognize that we hold a certain belief, we never think to question it. Our answers to questions raised later in the story, such as “what should the goals of autism therapy be?” are based in those beliefs. Without challenging our underlying assumptions, we can’t learn to answer those questions in new ways.
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[Content warning: the following 2 paragraphs discuss filicide and the murder of disabled people]
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The mother promoting ABA is Alison Singer, a well-known autism researcher who has been criticized by disability rights activists for multiple reasons, unmentioned in NPR’s story. Most infamously, in a 2006 film produced by Autism Speaks, Singer talked about contemplating a murder/suicide, specifically driving her car off a bridge with her autistic daughter in it, as an alternative to putting the girl in an institutional setting. Far worse, she said this right in front of her daughter.
I can’t imagine what it is like for any child, let alone one who can’t speak up in her own defense, to hear her mother talk about the possibility of killing her. Or to hear that her future might hold experiences her mother considers worse than death. There have been far too many cases of parents/caregivers actually murdering their disabled children, sometimes citing similar “life worse than death” fears.
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Singer ended her argument in favor of ABA with the very tired claim that autistic people who are “high functioning” enough to speak against ABA don’t understand the needs of more “severe” autistic people. To which I reply (as many others have done before) that some of those self advocates were once nonverbal children themselves. Some were given low IQ scores. Some didn’t learn to communicate in words until their teens or later. Some lived in institutions. Some were violent or experience self-injurious behaviors. Some still need significant assistance in daily life.
Plenty of us “high functioning” neurodivergent people work or volunteer with the more profoundly disabled autistic people that Singer claims we know so little about. And some of ABA’s fiercest critics are the parents and caregivers of profoundly autistic children/teens/adults who have substantial support needs and/or intellectual disabilities — the very ones that Singer claims need ABA.
I’m one of those caregivers. My clients include kids and teens with serious disabilities, most of whom who can’t speak or communicate in typical ways. They don’t always follow directions, or understand basic safety rules. They sometimes express themselves through violence against themselves or others, including me. And I’ve worked with them for many years, in a few cases for half their lives. I’ve watched autistic children grow into teens. Some of them had ABA. Others did not.
So I speak from personal experience when I say that, no, “severe” autistic people do not need ABA. What they need is for the adults in their lives to radically restructure their own worldview. To develop a totally new understanding of communication and learning. I have revised my own beliefs many times over the years, rethought my philosophies, and reconsidered my assumptions about what constitutes intelligence, success, and a life worth living.
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I want to acknowledge that these families can experience very serious difficulties — especially the task of keeping someone safe who lacks awareness of common dangers. But I have also seen that some of the riskiest behaviors still happen after 10+ years of regular ABA therapy. One teenage client panicked and ran in a busy area full of moving cars. Another almost had the police called on him recently for running into someone’s house. Situations like these can be deeply traumatic for both the autistic person and the people who love them. Again, years of ABA didn’t keep them from happening.
Many other aspects of living with profound autism, however, are only problematic if we choose to frame them that way. I recall reading a mother’s complaint that her son repeatedly threw away her small rugs…. yet for some reason, she kept replacing the rugs her son clearly hated rather than simply decorating her home differently. Her son’s actions were a “problem” only because she refused to make a small and easy change in her own behavior.
Shannon Des Roches Rosa, co-founder of The Thinking Person’s Guide to Autism, lives with her adult son who needs 24/7 one-on-one care. She writes:
“We have a good life, because we stopped buying into mainstream notions about what happy families look like. That doesn’t mean everything is always easy for my high-support autistic son, or for us…. No matter how intensive your child’s disability is, if you focus on accepting them for who they are and understanding how they experience the world, you will all be happier.”
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I want to acknowledge the racial (and socioeconomic) privilege in the advice to let autistic children and adults “be themselves.” Here in America, the parents of BIPOC children (especially boys) live with the agonizing knowledge that compliance training, no matter how traumatic, might mean the difference between life and death when their kids encounter authorities. Families with limited resources may not be able to provide a safe living situation for someone with atypical needs. But we must remember that it is the structural issues in our society, not the nature of autism itself, that places such heavy burdens on parents and caregivers.
Despite these injustices, I’ve seen such families find joy in their profoundly disabled children, and celebrate their uniqueness. Seeing a person’s differences and even their struggles through the lens of openminded and compassionate love is always an option, even when the world around you won’t do the same. By contrast, Singer’s whole way of thinking and talking about autism shows a profound refusal to listen to everything that autistic self advocates and their supporters have been saying for decades, despite her claims to having listened and learned.
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How is there such a vast chasm between what autistic people keep writing and what so many non-autistic people believe about autism? It’s almost as though we are using the same words but speaking different languages. I think this is because the two sides start the conversation from such different perspectives that they can’t even understand each other’s arguments. After a decade in disability rights circles myself, it’s easy for me to forget that most people think about autism (and disability generally) from a perspective I haven’t held in years. They are coming from so far away that many things I consider obvious have never even occurred to them. It’s easy for me to forget how much I once misunderstood, and how long it took for my own fundamental assumptions to change.
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I am reminded of autistic self-advocate Julia Bascom’s words, “[U]ntil I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.” And anyone parenting, teaching, or supporting a profoundly autistic person needs to move a LOT further than 3% in the direction of the person they want to help. And that, I think, is one of the most fundamental things lacking from most discourse about autism and autism therapies. The middle of the NPR story touches on that need, and on the clinicians and researchers who are finally starting to understand it. But we need more of that. Much, much more.
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I’ll take a break here. This post is too long already and I still have much more to say.
Restless Hands 
“Plenty of us ‘high functioning’ neurodivergent people work or volunteer with the more profoundly disabled autistic people that Singer claims we know so little about. And some of ABA’s fiercest critics are the parents and caregivers of profoundly autistic children/teens/adults who have substantial support needs and/or intellectual disabilities — the very ones that Singer claims need ABA.”
The assumption that we don’t know autistic people with higher needs always gets me. I don’t even work or volunteer with autistic kids like this; I know their families. We’ve been doing advocacy together for over a decade now. I’ve spent holidays at their houses. I’ve been wrestled to the ground by their kids and forced to sing at the dinner table. 😀
Obviously it’s not like being a parent, and it’s not like being someone whose support needs are that much higher, but I think there’s a lot of projection going on where we are being assumed to be as cut off from the realities of the lives of autistic people different from us as these parents are from the realities of our lives. And that therefore our positions are based in lack of information. But we aren’t.
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