I was recently asked to produce a review/cultural essay for Disability Studies Quarterly based on a list of five of the most recent books on autism. One of those books, which I am starting with because it’s the only one I actually have in my hands right now, is John Donvan and Caren Zucker’s In A Different Key: The Story of Autism.
Borrowing a good idea from Friend, I’m starting with all the stuff that isn’t in a chapter. Here, that’s the frontmatter and backmatter, but also the Preface, Epilogue, and Author’s Note.
The one word that sums up the preface to this book is “commodity.”
The preface opens on Night of Too Many Stars, 2012 – the Jon-Stewart-hosted benefit to raise money for “autism.” Donvan and Zucker do not tell us where exactly that money went or what it was spent on – a pattern we see repeated by far too many autism-related charities, including the biggest, Autism Speaks. Instead, they start with NOTMS as a way to highlight the way in which autism, once scarcely even heard of in popular culture, is today everywhere. Whatever you think of it (or don’t), you’ve heard of it.
But, as an autistic reader, I find this preface comes off as crass and commodifying. The “awareness,” the money, the viral hits, are clearly being made off our backs, and this book is contributing to that tradition without a moment’s self-reflection or pause on its collusion. And when a substantial number of us are unemployed and impoverished, that’s not my favorite note on which to start a book.
The Epilogue dwells mostly on the dire straits in which the adult autistic population continues to find ourselves: largely deprived of services, unable to find meaningful employment, struggling with activities of daily living that we cannot manage ourselves. There is, again, no focus whatsoever on autistic adults who are working together to help each other in these situations, have found or are finding workarounds, or who are launching programs to help ourselves with problems of housing, ADLs, employment, and safety.
It’s as if the authors never even though to ask the autistic adults they interviewed what was up – and since they claim to have spoken to Ari Ne’eman, at least, I know they talked to at least one autistic adult who could have clued them in on some of these projects. Either they didn’t ask, or they chose to leave that bit out. Either way, it’s a glaring omission from an otherwise important point.
A Note From the Authors
The authors explain where they pulled their information, including the artistic license they took in telling Donald Triplett’s story – they could not speak to his mother (who passed away in 1985) so they made stuff up for her to think and feel. Cool. Because nobody does that to women these days, even when they’re alive. Oh, wait.
The last paragraph adds, almost as an afterthought, that the authors persist in using “person with autism” even though some “individuals or groups prefer the latter,” in which case they use “autistic person.” They omit to mention that “groups” include vast number of autistic people – not just, as they claim, “those in the neurodiversity movement.”
As expected, this section is large lists of names – except where it claims that having autistic family members (as both authors do – one son, one brother) can teach them “what the “autism experience” is about.” Um, no. I haven’t even read anything in a chapter yet, and I can say with confidence that you do not know what the “autism experience” is about unless you are also autistic.