Friday, 3 December 2010

What I believe about Autism

I figure I might as well lay out my beliefs about autism from the start. Note I include Aspergers here as well.

1) Autism is genetic. Period. Even if there’s no autism in your or your spouse’s family (have a lot of techies and engineers in the family? A few ‘eccentrics’ or loners?), it’s still genetic. It’s not caused by vaccines, mercury, bad parenting, damage in the womb or at birth, or any other environmental cause. The most I will accept is that something might trigger the autism that is already there. As for the ‘autistic collapse’ which so many report, read Charlotte Moore’s book ‘George and Sam’. She goes into a lot of depth on her two autistic sons’ collapses, on how the signs of autism were nonetheless there from birth, subtly but unmistakably. She also postulates that these ‘collapses’ might be due to how, while we expect little social or linguistic interaction from babies, greater expectations in the infant’s second and third years (typically) overload and cause a withdrawal on the part of the young autist. To which I would add probable sensory overload as well.

2) Autism is not a monster. My autism is me, and I am my autism, it affects every part of my being and my life, and while I’ve never been any angel, I’m certainly not a monster. There is no ‘normal’ person underneath the autism; it is not a ‘layer’ hiding the ‘real’ person. Our ‘true selves’ were not ‘stolen’ by the ‘monster autism’. What you see is the real person. We’re autistic all the way through. Deal with it.

3) Autism is not a tragedy. It can be difficult, yes, even arduous, raising a child on the autistic spectrum, even one with the ‘mild’ diagnosis of Aspergers. But it’s only a tragedy if you make it a tragedy. Attitude is what counts. Go around boo-hooing about how hard your life is now, lamenting that your child is ‘not normal’, and you will make your life infinitely harder than it need be. (And for those who think, “oh well, she’s obviously on the ‘higher-functioning’ end of the spectrum, she doesn’t know what it’s like raising a severely autistic child”, I would say here that I worked with such children back in the 1970s, before modern understanding of autism. Also a good friend of mine has a child who is severely autistic and developmentally delayed. I know what I speak of.) Read Jim Sinclair’s essay ‘Don’t Mourn for Us’ (at ), grieve for the child you thought you had that wasn’t born, and then deal with the child that you have. Love them as they are. They will need it.

4) Autism is a disability. Now this one is tricky, and needs to be qualified. It hasn’t been (in my opinion) adequately separated out what about autism truly causes the person to be ‘disabled’ or ‘lesser-abled’ – such as our executive dysfunction, lack of innate social skills, inability to read body language instinctively, or developmental delays – as opposed to those traits which are simply signs of our different thinking/reacting to the world – eg our stimming, our visual thinking, or our ability to thoroughly absorb all there is to know about our favourite subjects. The first, we need help for, yes, the latter, I don’t see need to be ‘corrected’ or ‘squashed’ at all. Sometimes, it seems even those on the spectrum aren’t too clear about this distinction.

5) Autism’s different mind-set is NOT a disability. This follows on from the last, really. We have a lot to offer, if the world would truly listen to autists themselves (and I don’t mean only those who are ‘higher functioning’ either). For instance, our thinking isn’t bound by the usual conventions, prohibitions, and restrictions. We cut through the bull, the ‘beating around the bush’, the little dishonesties that rule most people’s lives. We call it how it is – even if it’s nonsense (to use the polite word). We’re truth-seekers. Some actually like this in us. And if the world would only give us a chance, they might find much more to value in our ‘different’ ways of thinking and reacting to the world.

6) Any therapy for autistics must take the above into account. There is a belief out there among some parents of autistic children that we adults on the spectrum are against all therapy for autistics. Not so – or at least not the ones I know. What I (and i suspect many other autistics) would like to see is that before undertaking any therapy, parents ask themselves – what am I hoping to achieve? Do I want to give my child specific skills that will help them in life – or do I want to eliminate all signs of their autism? The first is the help your child desperately needs, the second is not, and may even be harmful. Read the following, which explain this better than i can, and in more depth -

Okay, that’s it - for now.

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