What makes an autism expert? It`s a phrase we hear a lot, but it`s mostly in connection with a non- autistic professional who has earned a degree in autism, and is now regarded as a world expert on the subject. One counter to this often brought up by autistic people is that we are the true experts. We have been autistic our whole lives, and we have had to spend a huge amount of time thinking about it: what positives it brings, and how to deal with the negatives.
For me when it comes to autism I think expert is the wrong word, or rather it takes on a different meaning when applied to autism. I am autistic. I have written books on autism, talked about autism to roomfuls of people, and spent well over a decade reading and learning about autism, and yet I still find out new things every day. If I spend long enough on Twitter each day I will come across a tweet or a blog by a fellow autistic that will teach me something new, or put in to words something I felt, but did not understand.
I know a lot about autism but I am still learning every day, and I hope to always be learning. You could call me an expert in the sense that I could talk to a room full of people on the subject, and I write books about autism. But you could also call most of the autistic people I follow on Twitter experts. It`s not that I don’t read books or blogs by non-autistic people, I do, and some of them are well worth reading, but in terms of learning something new about myself, that only comes from reading other autistic people.
I should be clear here, I am not trying to shut non-autistic people out. What I am saying is this; you won`t become an autism expert by reading one or two books by non-autistic professionals. In order to truly know and understand autism you must read widely, but you must focus on Autistic writers, and try to read them every day. Even if it`s only a small amount, all those voices added together will give you a much better understanding of autism than any one book or course will. We all lead different lives, and therefore different experiences prompt us to write, and we all gain understanding about ourselves gradually over the course of our lives. Sometimes, despite feeling like I know myself quite well and have a good understanding of what it means to be autistic; how and why I do the things I do and feel the things I feel, I will sit down and read a blog that makes me realize something about myself. Having that feeling of nodding along and going “Yes that’s me, I never realized that before, but yes that is me.” is much more common than you might think. Not only do I learn something about myself, or find a way to put in to words something I have always felt but never understood, but I learn something about autism in general.
Also, without wanting to sound arrogant, I know my own writing can have that same impact on other autistic people. That’s not a guess, I know because they have told me. It`s a nice feeling to know that something I have written has helped someone understand something about themselves better, or put in to words something they have been thinking but have never said. I know what it`s like to be on both sides of that.
The point that I am making here is yes, I know quite a bit about autism and that is drawn from my own life, from spending a lot of time thinking and talking about how I feel, and why, but also from reading the work of other autistic people on an almost daily basis for years. It`s fine to call people Autism Experts, but the key for me is, do they think they are done learning? If so they never really understood autism in the first place. And if they are non-autistic do they understand that we are not lab specimens to be studied, rather we are flesh and blood people who, like other marginalized groups, are doing our best to tell our own stories, and educate the rest of the world on who we are.
Any true autism expert would know that how ever much they think they understand, and how ever much they have already learned, there is always much, much more to know and understand.
You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html
If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?
And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!) http://www.jkp.com/catalogue/author/1762