A stereotype that is pretty constant is that autistic people like routine, predictability and knowing what’s happening now, next and later. It’s one stereotype that is I think reasonably true. Many autistic people hate change, but of course not all, for some it is something they enjoy. Some autistics find it mildly annoying and some of course find it incredibly difficult to deal with to the point of sending them in to meltdown, or shutdown.
I am one that doesn’t like changes to routine and like to know what is going on. I find it quite difficult even at times to make a side trip on the way home to drop into the shops if it is not a planned thing. Depending on my levels of anxiety at the time it has resulted in meltdown for me. Most of the time I can manage it but it causes difficulty for me to cope and keep going through the rest of the day. It uses up necessary spoons and requires spline reticulation.
One thing in my life that I seem to be able to count on with an almost certainty is the progress of a discussion in autism support groups that are dominated by non autistic parents, siblings and friends of autistic people. It’s one of those things you can almost set your watch by. If it wasn’t a case of serious issues being discussed it would be one of those things that we would probably want to just scroll on past or just let go. That’s the thing though, it’s serious stuff, like whether autism should be cured, like vaccinations causing autism, like the use of questionable therapies. The passage of the discussion is almost like following the GPS unit in the dash of your car.
Let’s take for example a discussion about the supposed link between vaccines and autism. It’s a well publicised myth and touted by celebrities and conspiracy theorists and so called “truthers”. It’s been debunked so many times it is just not funny, it’s really getting old, really old. But, it is a common topic of discussion in autism support groups online. It typically goes, with a leading question posted by a parent asking what people think about vaccines, or perhaps like what I saw recently is a picture of a doll with a whole bunch of vaccination needles stuck in it to apparently represent all the injections that a child will receive by the time they are aged two. Of course the big problem with that image was it is different regime of vaccination in every jurisdiction around the world anyway.
What follows is almost to a script. There is the response of the sad parent who states they don’t say all autism is by vaccination but it is for their child, follow by expressions of sadness for the people by other parents, followed by an actually autistic people stating that autism is not a disease that is caught but a neurological condition that is developmental and from birth and lifelong. Queue the anti-vaccination brigade, they come in now with a bombarding of links to so called scientific studies proving the link. Often the site url will be naturalnews.com or vactruth.com.
This will be interspersed with comments to the autistic people who have commented that they don’t speak for their child and that they don’t know as they are so high functioning and on the mild end of the spectrum. The unreliability of the pseudo science sites will be highlighted by autistics and some of the parents, this will be followed with outrage from people that you dare to question their beliefs. And so it goes on…
It’s a very similar conversation regardless of the topic. It could be about the need for a cure, it could be about particular biomedical treatments such as chelation or MMS or GcMaf. It could be about wacko treatments like hyperbaric oxygen chambers or quite ridiculous ideas like GFCF diet and even, believe it or not poop transplants. It could be about therapies like ABA, in fact ABA may be a topic almost as common as the vaccination one.
The constant of this is that it’s not a hopeful dialogue. It’s at time a dialogue that brings despair to autistics. It brings despair to autistic allies. It really does. I can’t comment what whether it brings despair to others as I am not in that place to experience it. As an autistic I can say that the despair is about being not listened to, to be sidelined and disregarded as though your lived experience is invalid and not informative to the discussion.
It is hopeless because one would think that those that silence us would be able to see that we are the types of people that their children will become, that we say what we do because we really do want the best for their children. That many of us have been through these issues first hand and have been harmed by them and do not want their kids to be harmed either.
I know that these parents love their children and really do want the very best for their children. That is simply not in question.
The big question is how do we bring hope to this whole thing. I believe it is by calling for diversity to be the norm, in particular neurodiversity. This involves standing against the idea that Autism is an epidemic, something to be feared and something to be done away with. To stand for autistic voices and them being heard by those in the mainstream.
In a recent LA Times Op-ed Steve Silberman the author of the newly released Neurotribes has called on the largest autism charity Autism Speaks to do a lot more listening. He noted that they have no autistic people on staff or on their board. He called on them to listen to autistic voices. The response of Autism Speaks was to make a call for unity and to use the words of a non-autistic parent to do so. So to be clear a call to listen to autistics is met by a call to unity by a non-autistic parent.
Not really a positive step towards diversity is it?
And therein lies the problem…