Two weeks ago, I asked for Twitter responses from autistic authors and, mostly, this was what I got. There were two or three parents who had written books about or for their autistic children who responded to the request. In autistic spaces online, there can be tension when the request for the autistic voice is ignored, and these can lead to long-running arguments that turn overly personal or where people’s own experiences of autism are diminished or dismissed. One frequent point of debate, which came up in part during the discussion on my Tweet, was that some autistic people cannot write their own stories and that by leaving out stories by parents of autistic people, those autistic people are also missed out.
I am not going to include books written by non-autistic parents in this Tweeting campaign of mine, but I have been thinking more about how we access the “voice” (non-literal) of the autistic people who are often excluded from things like the #AutisticAuthors thing I am running. This isn’t just about accessing the voice of autistic people who don’t speak though. There are several books and blogs credited to autistic authors who do not or cannot speak, and people are often directed to these by other autistic people on social media.
What I ended up thinking about was about accessing the voice of autistic people who perhaps have not currently got the means to communicate everything they want to. Or the voices of autistic people who have a learning disability as well as autism and encounter barriers to having the full details of their thoughts and views expressed in a way that many people understand. Could their books be written in their voice without a parent writing entirely on their behalf?
I think it’s possible, although it isn’t without complication. Photography could put words and communication on the page. Software such as Clicker6 or Widgit or Boardmaker might be helpful although using software like those often requires different communications skills which could also be inaccessible. If we think outside of traditional definitions of books, then videos and stills from videos could access still more voices. Some people have already started to access people’s views using these methods.
Would this cover the full depth and range of thoughts and opinions of an individual?
In many cases, probably not. Then, with videos and many photos at least, there has to be careful consideration of consent and even whether writing a book is what that person even wants. Of course, unless written completely anonymously or carefully – the matter of consent is something that should absolutely be considered in parent biographies as well. In more recent months, I have thought of some of the parent biographies I have read and reviewed and wondered how many of the children gave permission for some of their most vulnerable moments to be written about.
This all combined means that yes, my #AutisticAuthors campaign does exclude some autistic voices and I think it is important to acknowledge that.
That doesn’t mean that things like boosting Autistic Authors (as I and others are doing this month) doesn’t have value. I think it does have incredible value. What it does mean is that I need to acknowledge that some autistic voices are excluded and be willing to think about how things can be more inclusive and change them when ideas are found.