Awareness versus propaganda

I’m glad I live in the UK.

Here in the UK, autism isn’t well understood outside of families that have been touched by it. I believe it’s still very much seen as a condition in kids that causes them not to interact with others, and to rock backwards and forwards. Many people in the UK will have heard of Asperger’s, but will have no idea what it is.

These assertions are partly borne out by the fact that I’m a well educated middle class man, and I didn’t know what Asperger’s was and indeed my knowledge of autism was framed much as I stated above until such time as it was suggested that I was on the Autism Spectrum. A spectrum? Goodness – that was a new idea to me. When I went to see my doctor last week, she said, “So of course, autism is really a spectrum, with different degrees of affectedness…” as though this was something new to her too.

This lack of knowledge makes my job of just how much to tell people about my autism quite a challenge. I’m aware that a great many people will start with the stance that I can’t possibly have autism, because, well, I’m actually talking to them, and autistic people don’t do that, do they?

But do you know what? I’d much rather have this challenge, than the one that I perceive people in the US have.

In the US, various groups lobby for their view of autism to become the accepted norm. They have a lot of power, a lot of money, and are often backed by famous individuals to lend them that extra bit of trust in the eyes of those who listen to their messages. They release expensively produced videos that are carefully crafted to further their cause.

The problem for me with all this is that the message they are sending is not actually based on the reality of autism.

I can’t imagine what it must be like being a freshly diagnosed adult with autism trying to explain themselves in the US.  As well as general ignorance towards the specifics of what autism really means, you are going to be faced with people who think they know all about autism, because they’ve seen one of the lobbying videos from these groups.

All of a sudden, you are going to be talking to someone who has just associated very negative things with you, based on something a celebrity told them on TV – so it must be true. You may be viewed as being a home wrecker, or incapable of feeling empathy for others. You will likely be seen as damaged, and you may be asked how your treatments towards a cure are going. In short, you may well be seen as being a worthless person.

A particularly nasty vision of this negative propaganda was released this week by Autism Speaks. You can see the video here, on YouTube. Words fail me as to how truly despicable this video is. Various other places on the Internet have noted how, if you mute the sound and watch the video, you only see happy and contended autistic kids and adults. Add the commentary, and well, it turns into something completely different. It upsets me, and it’s just plain awful. Period.

Autism Speaks does not speak for me.

I’m very happy to report, however, that this morning I saw another video. One that helps to redress the balance. Rethinkingautism.com does not, I am sure, have the same political clout or lobbying ability as Autism Speaks, but they have produced a wonderful video to counter the likes of Autism Speaks. I encourage you to watch it – here on YouTube. If only this was the message that was being given the really hard sell in the US…

Coming out to the world as autistic is never going to be easy, regardless of where you live. But I’d rather that the population knew nothing about autism than they were being fed very slick misinformation from a well-oiled political propaganda machine.

What would be really wonderful was  if autism was as well understood and tolerated  in the population at large as, say, cancer is. The irony of this statement is of course that cancer isn’t really well understood by people, but people generally do know enough about it to understand how it impacts people, and to empathise. And that’s really what autism needs too.

Maybe one day…

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