I was browsing the New York Times Magazine online this morning when I saw a story in the sidebar, ‘When Autistic Children Become Adults,’ from the Motherlode blog. Hmmm, I thought. This might be interesting.
The article opens with a discussion of the rise in autism diagnoses over the last half of the 20th century, and points out that growing numbers of people diagnosed with autism as children are growing into adulthood, with an estimated 88,000 autistic adults in the US today and numbers that will only grow larger in the coming decades. All well and good, an interesting thing to talk about, but the sole focus of the article is on parents of autistic people.
What to do for the wave of children with autism when they grow into adults? There are an estimated 88,000 such adults today, and their parents all face the anxiety that hundreds of thousands more parents will confront in coming years.
Ah, yes, the parents. Yes, by all means, let’s focus on the ‘anxiety’ of the parents, because that is the important thing here; let’s not talk, for example, about the pressure to institutionalise autistic adults and what that means for actual autistic adults, no, let’s focus on what that means for the parents. Let’s not talk about lack of social equality for people with disabilities in general, about ableism and discrimination, about why it is that parents and caregivers are taken as authorities on disability over actual people with disabilities. Let’s not talk about the very real fears that people with autism have about being institutionalised and abused. The story links to a longer piece discussing the growing numbers of autistic adults, and again focusing on what parents are supposed to do, and concludes:
Then, those of you who are struggling with this question in your own life, please use the comments to discuss your plans and fears for your children — and let us know how the rest of us can “actively root” for them as they navigate the future.
Notice anyone missing from this statement? I sure did.
Despite discussing the fact that there are autistic adults right now, their opinions were not solicited, and parents were invited to tell readers how to support adults with autism. Parents. Not autistic adults. I guess we would have nothing of interest or relevance to say, eh? In the comments, which I do not recommend, an autistic adults did speak up, but not to challenge the narrative put forward in the article, that parents, rather than actual people with autism, should be the trustworthy sources of information on this issue.
Anna’s written here about self-appointed ‘advocates’ speaking for people with autism and all the problems embedded in that. This is a serious issue for many people with disabilities, but with autism, it is perhaps most stark, and most striking. We have major autism organisations without a single person with autism on their boards. Run entirely by parents, and sometimes actively rejecting input and requests for discussion from autistic people.
Of course, the comments exploded with a furor of ridiculousness as people demonstrated their ignorance about the deinstitutionalisation movement and other topics. Rank hatred oozed out of many of the comments, and if autistic adults hadn’t already been basically excluded already, they certainly wouldn’t have wanted to join in the conversation after scrolling through the comments to get to the submission box. The article made it crystal clear that commentary from us wasn’t deemed necessary or desirable, as did the comments.
It’s natural and understandable for parents to be concerned about the welfare of their children, and parents fighting hard to keep their children out of institutions and abusive situations most definitely have reason to be worried about what will happen when they die. I’m not saying parents don’t matter, but I am saying that it is not appropriate to position them as authorities over actual people with autism, including their own children. I am saying that people without autism should not be spokespeople for people with autism, that any conversation about ‘what to do with autistic adults’ should include autistic adults.
Yes, I would expect a parenting blog to focus on parenting, but an important part of parenting, to my understanding, seems to be supporting autonomy and self determination for your children, allowing them to speak for themselves, allowing them to become fully integrated members of society. This is most definitely an issue of relevance to parents, and part of parenting is knowing when to speak, and when to listen. It’s time to listen to people with autism, not their parents, and that includes autistic parents who may have some insightful input into this discussion; the underlying assumption in this article is that no parents have autism, and that is demonstrably untrue.
We want to talk about how to ‘support’ autistic adults? How about asking actual people with autism for their opinion on the matter instead of hosting free-for alls filled with ignorance and hatred in the comment sections of major newspapers?