When John Met Jonah
Recognizing that a shared diagnosis is not enough.
Posted Jul 09, 2019
The author was speaking metaphorically. But for years, I have thought that literally, physically, bringing the two sides together was the key to—if not healing the divide between autistic self-advocates and parents of severely autistic children—perhaps ameliorating it, just a bit. Whenever I heard neurodiversity advocates discuss severe autism, I couldn’t help thinking of that great line from The Princess Bride: “I don’t think that word means what you think it means.” No one who had spent any time with my son Jonah or his peers could sincerely argue that severely autistic adults can serve on the Interagency Autism Coordinating Committee (IACC), for example, or that guardianship represents as gross a human rights violation as genital mutilation.
So I invited them. In 2016, when self-advocate and IACC member John Elder Robison challenged my claim that my son Jonah’s cognitive impairment precluded him from ever choosing where he wanted to live, I invited him to come and ask Jonah himself. Writing about our conversation later, I extended an open invitation to all self-advocates—one that I would repeat over the following years—please come. Before you make absurd claims—like that autistic children who wander just are trying to escape abusive homes, or that everyone can achieve competitive, minimum wage employment, or that ABA is torture—come spend a day with Jonah. And if you can’t get to Pennsylvania, I added, I will make introductions. It’s not hard to find families like mine. But no one ever accepted.
Then, in January, I received an email from Caren Zucker, co-author (with John Donvan) of the autism history In a Different Key. She had read about my invitation to John Robison and wanted to film a meeting between him and Jonah for a documentary inspired by In a Different Key. Was the offer still open?
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When John arrived at my house on March 14, our greeting was brief. I introduced him to Jonah, then—as Caren and John Donvan had requested—I left the two of them alone.
But I had barely settled down in my kitchen with a book when I was summoned back to our foyer. John was sitting on our steps; Jonah was ambling around the room, paying him no attention. John had been unable to engage Jonah. Could I facilitate?
The three of us spent the rest of the afternoon together, then John joined my entire family for dinner. Most of the talking, unsurprisingly, was between me and John—although Jonah did interject occasionally, to ask me to make a “fun list,” or get him some lemonade, or engage in one of the highly scripted routines he enjoys (i.e., Jonah says, “Chicken song” and I have to say, “I don’t know what the chicken song is,” and he jumps up and down, beaming and clapping his hands. If I try to guess how the chicken song might go, Jonah will interrupt and say my line himself, for me to repeat: “I don’t know what the chicken song is.”).
John and I spoke a great deal about housing, since this was the topic that had catalyzed this journey from a 2016 IACC meeting to my kitchen. It turned out that we were in basic agreement about the need for a range of residential settings, to meet the diverse needs and preferences of the autistic population. John told me he could see the appeal of peer-specific, intentional communities, admitting, “It’s hard for me to understand sometimes the opposition to things like a community of people living together.”
I was happy to hear that, but for me, there was an even more important question. John had initially responded quite harshly when I told him that Jonah couldn’t decide for himself where to live. Although he quickly apologized, his skepticism resonated with a larger claim made by many neurodiversity proponents: that the real problem isn’t the profound cognitive impairments of Jonah and his peers, it’s that parents like me simply don’t understand our children, so we need autistic adults to interpret for us. Lydia Brown, for example, insists, “Autistic people understand other autistic people’s experiences far better than any non-autistic person simply by the very nature of also being autistic.” In NeuroTribes, Steve Silberman recommends that parents allow mildly autistic adults to “translate” their children’s behaviors into “terms [parents] can understand.” In fact, there’s an entire book of essays by autistic adults written for parents of autistic children entitled, The Real Experts.
And this stupefying arrogance, this absurd claim that autistic adults who have never met Jonah know him better than his father and I do — that despite the vast difference in cognitive ability, language, executive functioning, independence and self-control, these self-advocates should decide the appropriate educational, vocational and residential settings for Jonah because of a shared diagnostic category so broad it has become essentially meaningless — honestly, it burns. So, more than anything else, that’s what I wanted to ask John. After a day with Jonah, did he have any revelations? Did he still think I had misspoken?
John was straightforward: “No, I can’t talk to Jonah about where he wants to live…I don’t feel like I have insight to offer about what he wants in the future.” More fundamentally, he said, “I would be very hesitant to just make the statement that autistic people can better advise you about child-rearing than anyone else.”
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When Caren interviewed me before John arrived, she asked me what I thought would happen when John met Jonah and I said, “Nothing.” What I meant was that I knew John would be unable to divine Jonah’s future plans about housing—not because of any lack of interest or effort on John’s part, but because Jonah’s severe autism precludes him from making such plans.
But it wasn’t nothing. I learned something important that day from John. I realized that I have been painting autistic self-advocates with too broad a brush. And that, while neurodiversity proponents are loud, they not only do not speak for Jonah, but they don’t speak for John—or Jonathan Mitchell, Tom Clements, Twilah Hiari, and so many other self-advocates who are true allies of parents in our common fight to maximize the quality of life of all people with autism.
Thanks to producers Caren Zucker, John Donvan, and Ray Conley for facilitating this meeting, and to John Robison for not only being open-minded enough to come and meet Jonah, but brave enough to do it in front of the camera.
The film In a Different Key will be released in 2020, and it features autistic individuals from across the spectrum.