Nothing about us without us, and why it matters.

I know it's been a while, but I've been having a few blocks, the main one being that I somehow managed to worm myself into the mindset that I had no right to write this blog. I felt underqualified. I'm just a student, I don't know all there is to know about Aspergers. I have quite a "mild" case of it myself so my experiences probably aren't typical, I haven't done any national surveys or important interviews, I'm not a professional Journalist or Doctor or Teacher, I don't even know whether anyone will agree with what I'm saying. I don't have any credentials at all, unless you count an expanisive history of being an opinionated sod. Why on earth should anyone listen to little old me?

Of course, what I've now realised isn't that everyone should listen to me, that would be daft, but that my own subconscious perception that I needed credentials say a lot about the current landscape of the AS advocacy movement. When I look at other movements, I see black people speaking out against racism against black people, gays and lesbians fighting homophobia, women championing feminism. Most fat acceptance advocates are fat. Goths were the first to support S.O.P.H.I.E.

I look at those movements, dominated by the people they were created to help... and then I look at the autistic spectrum.

Every newspaper article written about a person with Aspergers or autism contains more quotes from the person's relatives than from the person themselves.

It is rare that people with Aspergers or autism get given the chance to speak out about issues affecting them in the press, and when they are, their views often come lower down than the views of parents.

Neurotypicals with autistic relatives are usually the first to be asked about autism/Aspergers.

The term 'autistic parent' refers to a parent of an autistic child, not a parent who has autism.

Most support organisations set up to help or advocate for autistic people are run by neurotypicals with autistic relatives or students.

When researching autism for a book, TV show or film, autistic people are given little input. Mark Haddon went on knowledge he'd obtained through mere observation; Jessica Baglow (Waterloo Road's Karla Bentham) chose to talk people who had worked with people with Aspergers, rather than people with Aspergers themselves.

When studying autism or Aspergers, scientists rarely ask us about ourselves, preferring to guage their conclusion by observation. This has led to incorrect conclusions being formed and presented as fact.

To speak purely from personal experience for a moment, many discussions about autism or Aspergers that I have come across are dominated by neurotypical parents. Even on websites specifically set up for disability self-advocacy, such as BBC Ouch, most of the AS accounts and stories are by neurotypicals. Now, I can't speak for everyone and I have no idea how common a feeling this is, but for me personally, the sheer pervasiveness of parent-and-expert domination has led to me, on occasions, feeling shut out of my own movement.

As it stands, AS advocacy is run by neurotypicals. Imagine this scenario being true for the groups I mentioned above. Imagine if LGBT groups were run solely by straight people. Imagine if men spearheaded feminism.

It would be wrong, wouldn't it?

Now, these neurotypical parents mean well. They make good points, and they are valuable, certainly. I'm not trying to kick them out or tell them to shut up. What I am doing is saying that they shouldn't be in charge. It shouldn't be them deciding what the problems are, what is and isn't true about people on the spectrum, what needs to be done. They may have good knowledge, but they can't know fully what it is to have an autistic neurotype, be it Kanner's autism, Aspergers, ADHD... it is the people who can lay claim to one of those neurotypes who should have the final say.

And that's what I've realised. People understand that the only qualification you need to speak out against racism is to be a member of an ethnic minority. So here I am, saying that you don't need a Doctorate or a child or a diploma to speak out. If you have Aspergers, or autism, or ADHD, then that is the only credential you need.

So, to round off by coming back to the title, Nothing about us Without us is, for those who aren't familiar with the term, a phrase widely used in general Disability advocacy stating that disabled people should be included in anything that references their disability, be it media, science, support or activism. This inclusion is something people with autism and Aspergers currently don't have. This needs to change. We need to be included. We need to make ourselves heard. And most importantly, we need to take charge of our own futures.

With the right support...

"With the right support, he was able to succeed at school."

"With the right support, she was able to find a job." 

"With the right support, they can go on to lead fulfilling lives."

When reading about Aspergers and Autism, you'll probably see sentences like these all over the place, and chances are you won't think much of it. I certainly didn't at first. A few lines explaining that good support can be helpful, even vital, weren't going to raise any red flags. After all, it's perfectly true. What's there to object to? 

Well, as you may know, there seems to be a bizarre misconception that children on the autistic spectrum don't grow up naturally like Neurotypical kids do, and in certain circles any progress, whether academic, social or linguistic will be put down to whichever therapy the parents have decided to push their child through. When little Sarah widens her vocabulary, it wasn't her learning naturally as all kids do, or even a concentrated effort on her part to learn something she wasn't naturally good at. It was 'the therapy'. I think the problem with this attitude is obvious- even though the therapist may have been very helpful, any effort Sarah made to learn the new words is ignored as though it wasn't there, essentially relegating her to the completely passive role of an object that doesn't think while the therapist takes all the credit.

The more I look at the the 'with the right support' sentences and their ilk, the more parallels I see with the sort of scenario described above. In both cases, the autistic person who is doing most of the legwork when it comes to improving whichever bad situation they happen to be in is shafted, and other people, who may have helped a lot but are still, overall, secondary figures, come to the forefront. Adapting to an initially rocky school experience, finding good employment or learning a useful new skill or coping mechanism stops being the autistic person's achievement first and foremost. It was all down to the 'right support'- the team of people around the autistic person who are implied to have just moulded them like putty until they presented the correct results. 

Now, before anyone gets the wrong idea, I'm not saying the 'right support' shouldn't be congratulated where they deserve it. Some 'right support' are amazing and deserve all the praise they get and more. What concerns me is the apparent ratio between congratulating the autistic person for improving their own situation or encouraging them to do so in the future; and congratulating or enouraging external figures. In my experience the latter happens more often than the former, often when it would make more sense for it to be the other way around. It's misplaced and excessive. 

It's just part of the idea that people on the autistic spectrum (and as you could argue, people with disabilities in general), don't really count. It's "does he take sugar" at work. It's the assumption that people on the spectrum are apathetic and oblivious and don't fight or strive for anything. It's people on the spectrum being subconsciously, but automatically, placed second to whichever neurotypical is nearest. 

It's trivial in itself, yes, but the wider problem it's a symptom of is definitely not.