It's taken me awhile to feel emotionally ready to tackle this subject which has been blowing up the autism corners of the Internet over the last week. To start, a mom wrote a book about her autistic son called "To Siri With Love" which has been getting good reviews. Then adults with autism began to call for the book to be boycotted, saying it was hurtful to the autism community. The author has responded and the angry words have been flying hard and with considerable venom. I'll recuse myself right away that I haven't read the book and have no intention of reading the book. This is purely about my reaction to the Internet frenzy about the book.
And that frenzy has been really bothering me. I generally support the right of marginalized people to share their own stories and recognize that portrayals of autism in media are often inaccurate and promote more stereotypes than useful information. However, despite not being a direct target, I feel personally attacked by the #BoycottSiri and #ActualAutistic threads for several reasons.
1) The higher-functioning autism community have a tendency to ignore the lower functioning people or pretend they don't exist. This feels like another example of that with lots of posts about how "autistics" don't do X, Y, Z. Except that in the lower-functioning ranks, they do.
2) This book is a memoir, talking about the author's experience as a parent. Many of the attacks are focused on her parenting choices and fall along the lines of "how dare a mother say that it's hard to parent a child with autism." Society still judges harshly when a mother says anything except how blissfully fulfilled she is about her children and I find that is even more stringent when the child has special needs. The attacks are silencing on parents, who frankly need to have the right to talk to each other and the world just as much as their autistic offspring.
3) The debate is being framed as "if you're not with us, you're against us" with no room for nuance or actual conversation. If you don't wholly agree, then you are a horrible person who hates autistics and deserve to have horrible things happen to you. The level of personal attack is quite high and completely uncalled for.
I'm sure plenty of people will already be angry over what I've just written but I'd also like to break down some of the more common critiques, to illustrate my points.
The rants mostly seem to be being led by one blogger (whose post is linked above) who asked for a review copy and then describes herself as being so angry that she vomited. Particularly about the following points:
- the mom describes her child's speech as incomprehensible
- the mom describes toilet training as difficult
- the mom says her child has difficulty with empathy and theory of mind
According to the blogger, all three of these things are myths which never happen to autistic people (that's another big complaint of the blogger by the way, that the mom refers to her "child with autism" instead of her "autistic child" which the blogger finds personally insulting.) Going back to the actual list of complaints, plenty of children with autism have incomprehensible speech when they first get started, have extra trouble with toilet training and have difficulty both in reading and predicting other people's emotions and in recognizing that other people may have different reactions and emotions than themselves. The latter two points are even supported by the blogger at the same time that she lambasts the author for having dared to say it.
Then there's the attacks on the author's parenting, for having shared anecdotes about toilet training, her child's fears, and even some of the mean descriptors her child has faced. These complaints have nothing to do with the autism community and could be applied to any parent who blogs, tweets or Facebooks about their child. The blogger may well feel that it is inappropriate under any circumstances but to frame the sharing as particularly damaging to those with autism strikes me as a weak argument.
And then there are the attacks on the mother's fears for her child's future. She talks about concerns about him being able to have a relationship, worries that he may be taken advantage of, might get someone pregnant, and mentions seeking medical power of attorney so that she can deal with doctors and possibly arrange for a vasectomy to avoid further complications. As much as I can appreciate those who are high-functioning feeling threatened by such statements, these are real concerns when dealing with someone who is lower-functioning. So yes, it may be possible for him not to have a "real" relationship and still get a girl pregnant. And the mother would be irresponsible if she wasn't thinking about such possibilities and how to deal with them.
There are many more points I could use to illustrate. And maybe the book is just as offensive as they claim. I can't say, having not read it. But I can say that every single example being cited falls under the same categories: pretending lower-functioning people with autism don't exist and assuming that everyone with autism has the same abilities and desires as higher-functioning autistics; and attacks on parents, getting angry at them for expressing hardship, doubts and fears. And I've been doing a lot of searching, hoping to find a smoking gun of offense that would justify the anger so that I wouldn't have to feel attacked.
This isn't an #OwnVoices matter. The voices of those with autism are not being suppressed or supplanted. This is the voice of a parent, which is an #OwnVoice. And yes, she's not claiming that it's all sunshine and roses and "autism is the best thing that ever happened to our family" to make for an inspirational story. She's talking about the hard things that polite society likes to pretend don't happen.
If this backlash had been framed as "that may be her experience, but this is ours" or presenting anecdotes from those who identify with her son in order to illustrate the many different ways people experience autism, I would be promoting those stories whole-heartedly. But that's not it. What I'm hearing is anger and "sit down and shut up" directed at parents. I'm hearing "How dare you be human? How dare you have an opinion? How dare you try and share your own experience?" and that's not okay.
Parents of children with autism already get a lot of crap from the general public, the government, the schools, and any number of other places. It looks like we can also expect it from adults with autism as well, for not doing enough and for doing too much. For not being omniscent, perfect beings. (And now I'm overstating and simplifying, but that's how this feels right now.)