Recently-ish I attended an Autism Parent Support Group Meeting.
I wrote a bit about my experience in the link above and it was a difficult post to write up, but there’s still so much more I have to say about that meeting. So in an effort to keep some momentum going and get through this topic myself, I’m going to say a few words about the group’s library. This will hopefully be a somewhat lighter post both to read and write.
I will not be discussing many details about the books – mainly just noting the ratio of different sorts of autism-focused books. I have always believed that one can learn a great deal about someone by what books are on their shelves and groups are really no different. I’ve attended many parenting groups over the years (mainly focused on things like breastfeeding, gentle parenting, and childbirth) and their libraries were quite accurate pictures of the groups’ beliefs and priorities.
Sadly I didn’t get to take too many notes about the library. The people in the group seemed to be almost aggressive in their insistence that people who showed even the slightest bit of interest in the library check out some books, but I’ve really got enough to read right now (possible book reviews coming in the future!) and I mainly wanted to see what sorts of materials they were making available and considered to be valuable resources.
So I had to try and appear less interested in the books than I really was.
They had four different Autistic-authored books available in their library of forty total books. Ten percent is terrible to begin with, plus all the Autistic-authored books were memoirs! There’s nothing wrong with memoirs, of course, but they had nothing at all addressing autism issues or theory from an Autistic perspective, and only one of the memoirs was written by an Autistic woman.
The other three Autistic-authored memoirs were written by Autistic men, two of whom were white men (one from the UK and one from the US). The fourth was The Reason I Jump by Naoki Higashida, which gives some diversity although the intro to that book was horrible to get through. So much ableism. I’ve read some better things from David Mitchell written since then, but I almost threw my copy of the book out a window about halfway through reading his introduction. That intro is really not something I would want an allistic parent of an Autistic child to read as a trusted resource. Not without some serious countering commentary, at least.
One allistic academic author of all of them seemed to be compassionate. I didn’t write down the book title, but the author’s name is Judith F. Duchan. She’s an allistic PhD whose book (From google searching I think it must’ve been the book Communication Problems of Autistic Children: The Role of Context, which was published in 1982) seemed to advocate a good deal of understanding and compassion vs “cures” and “child training.”
That book stood out to me because it was one of only 2-3 allistic-authored books in the library that used identity-first language (Autistic people or children) vs person-first language (person or child with autism).
Of the remaining 35 books, a couple were sensory-friendly cookbooks, a couple more were academic-type books from allistic authors, and the entire remainder of their library, a full 75% of the total, were parent-authored and/or cure and training focused.
One of those books was a Jenny McCarthy book, because of course it was.
So, all in all, I was fairly distressed by the contents of the library. If it’s an accurate reflection of the group’s beliefs and priorities then it’s a horribly depressing reflection. It indicates to me that there’s ever so much work to do in my local area, as I suspect is the case in most US areas.
Those of us I know locally, including myself, are currently grappling with the question of how much we can reasonably expect ourselves to get involved in this sort of work. Even observing one meeting had a negative effect lasting weeks. There’s so much need in other areas too and we need to determine how our time and energy will be best spent.
I’m rather tempted to scrounge up some money as I’m able and periodically donate good books anonymously. That could help and would be relatively low time and energy spent.
One thing I do know is that, while learning about being Autistic has helped me personally beyond anything I could’ve ever imagined before, I can’t stop there. I have a long history of activism on the behalf of children who are being mistreated in the name of religion, medicine, and “discipline.” It’s well past time for me to start putting my experience into practice with this issue.