This week, Caren Zucker and John Donvan’s In a Different Key – The Story of Autism is on sale. The book has stirred some discussion with its stories. One concerns an exchange between Ari Ne’eman, founder of the Autistic Self Advocacy Network, and Liz Bell, wife of (then) a senior VP at Autism Speaks and parent of a teen with pretty significant autistic impairment.
In this scene from the book, Ari walks up to Liz and engages her:
…His determination and his integrity as a campaigner were unassailable. He refused to mince words, fudge facts, or make plays for the affection of his audience. Even face-to-face with an autism mom, whose total love for her child and despair over his future should have been evidence, Ne’eman was unyielding. He did not flinch, offer empathy, or soften his tone. Experiencing that, Bell went home thinking that people who still seriously doubted that Ne’eman had true autistic impairments were wrong. The total imperviousness she had witnessed appeared to her to reflect not simply Ne’eman’s convictions, but also an inability to take on a point of view other than his own. This, she knew, was considered a classic autistic trait —one that Simon Baron-Cohen had referred to as "mindblindness."
Describing the passage in his own review on Vox, Ari wrote:
One is left with the impression that an autistic person expressing a strong contrary opinion is mind-blind, whereas a researcher or parent who does so is merely passionate.
Having been around both Liz and Ari, I know both are possessed of strong views, held in good faith. I also know many of their views are opposed. I’m not surprised they disagreed, but was it fair for Liz to blame the “interactional failure” on a presumed disability of Ari’s?
In the original story, Liz raises a valid point. Any person diagnosed with autism will by definition have some degree of difficulty integrating other points of view automatically, because our ability to sense others’ feelings is weak.
But that cuts two ways. Many instances of autism have an inherited component. When kids are autistic, one or both parents are often part of what clinicians call the broader autistic phenotype. Meaning they have some traits of autism themselves, but not necessarily enough for a diagnosis. Since we are talking about the history of autism, let’s consider that both Asperger and Kanner noted autistic traits in the parents of the first kids they diagnosed, back in the 1930s, even as the none of the parents said "I'm like my kid."
Therefore, without commenting specifically on Liz and Ari and that exchange, we could say parents of autistic children and autistic advocates may each have some autism-related difficulty seeing the other’s point of view. To be fair, we must recognize that “disability related blindness” cuts both ways whether the parents are diagnosed or not. But that’s not all. If the parents are NOT part of the broader autistic phenotype, they then will have an inherent inability to see the autistic point of view simply because they are not autistic. So this kind of mutual blindness to the other's view is likely the rule, not the exception.
We can sum it up like this. As you see, passion and opinion don't enter into it:
Then there’s the question of perspective. The original story is told from Liz’s point of view, and in that sense she has the last word. The story could just have easily been told from Ari’s perspective in which case that honor would go to him. Is there a “right way” to tell this?
In particular, should the autism parent have the last word as a matter of course? That is one of the things Ari contests. From the parent’s perspective, they often feel they know their child best, and treat them with love and compassion. From Ari’s perspective, he’s heard too many stories of young people with autism who were hurt badly by misguided therapies and treatments administered by parents in the name of love, compassion and a desire for “cure.”
Ten years ago, today’s young autistic self advocates were voiceless kids, whose parents were speaking on their behalf. The fact that they speak today with such passion tells me that they don’t agree with many of the choices parents made on their behalf, years ago.
If the young autistics agreed with their parents autism treatment choices, we would not have the controversy that has erupted today.
Some of that is the universal disagreement between teens and parents, growing up. And some is founded on parents not understanding their autistic kids, or having misguided notions of what (we) might become. See the example above as explanation.
When I listen to the number of young autistic advocates speaking out against parent-driven autism therapies or attitudes they disliked, I have to question the “parents know best” narrative that has prevailed in many quarters.
I had a similar conversation with a parent myself the other week, in which she talked about picking a group home for her autistic adult son. I said, “Why did you pick it? Why can’t he pick his own place to live?”
“He can’t,” she answered. “His cognitive impairments are too severe.”
I had a hard time believing that. My dogs can pick which place they want to sleep, and they are non verbal with pretty low IQ. Yet they have no difficulty with that choice. In fact, most every animal chooses a place to sleep on its own. Was I to believe her autistic child lacks that ability? I knew that was possible, but I also knew it was unlikely. But was I using “probably” to trample her when in fact her son was the exception?
The mom assured me that was the case. To accept her point of view meant I must presume serious incompetence. My view – which is the mainstream view of the disability rights movement – presumes competence. I was glad this was just conversation, and I was not a court officer deciding the fate of her child.
The thing is, when we make those assumptions we will inevitably be wrong some of the time. And perhaps this mom has a child who truly cannot choose where to lie down and rest. But as a stranger, advocating for autistics as a group, do I presume “mom knows best” or do I presume the autistic individual can decide or at least express preference?
America’s legal and social service systems assume parents know best, unless shown otherwise. We also presume individual competence to make basic decisions, beginning in the teen years. Those ideals can conflict, in autism parenting situations where there’s a presumption of cognitive disability.
In his review, Ari touched on a sensitive issue that is faced by judges, social workers, and anyone else who is involved with autistics becoming adults. And of course it’s an evolving issue between autistics and parents.
Whenever decision makers are wrong on behalf of disabled people, those people suffer. I believe this is a problem that’s best solved by understanding, not by dividing into separate camps. It’s a hard thing and best addressed by working together, not by breaking apart, each assuming they know best. The best is often a middle ground found by collaboration. Even when parents know their children, autistic people know being autistic. Both inform and have value.
When other people take charge of our lives, it can lead us to some really bad places. Donvan and Zucker touch on that too, and we say it would never happen in America, but I don't know . . .
I want to thank Caren and John for bringing the discussion to the fore, with their book, and for everyone else for continuing the dialogue.
What do you say?
John Elder Robison
John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He's on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick