Don’t be sorry. And don’t try to cure me

What I don’t want the world thinking is that we all need fixing, and that people like me should never have been like me.

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Quite a few times I’ve read that those with autism feel like an alien in the company of neuro-typical people. Like many other Aspies, I often find myself feeling not so much “wrong in the world” as “in the wrong world”. I feel perfectly at home and not wrong at all when in my world. And yet we are still viewed, all too often, as something that has gone wrong – as if something happened that shouldn’t.

This week I have seen a new round of Things That “Cause” Autism:
Stress
Male hormones

And
Milk (?!)
Yup: Milk…

Previously in the firing line have been vaccinations, herbicides and mercury – to name but a few. You’ll note that a lot of the above could be categorised neatly in the “blame the parents but most especially blame the mother” camp. (I suspect you could google almost anything and see it causes autism.)

But… as milk comes from females, male hormones come from men, mercury is a planet, vaccinations come from needles, herbicides kill weeds, and stress comes from homework, I’m starting to form a picture of the true autism cause. And my scientific research has produced some helpful findings…

Kids: if your transgender, alien, needlework teacher comes into school wearing a dead dandelion and gives you homework….

RUN!!!!! You might catch autism.

Fact… ish.

Seriously though: most people don’t want autism, it would seem. They don’t want their children to have it either. But mostly it looks like it is the people who don’t have it who fear it the most – in the same way people fear homosexuality or immigration, I suppose. It’s fear that leads to scaremongering and scape-goating. We become obsessed with blame and avoidance. And while I appreciate that many of the more extreme traits of autism such as the more defined sensory processing problems and considerable communication problems in some, make autism an often painful hell for individuals and their families, it isn’t like that all the time, and I am concerned about treating autism as a disease or an illness that we must find a cause and a cure for. It is neither a disease nor an illness: it is a way of being – just like being gay or being left-handed, and I’m worried the cause and cure obsession gets in the way of acceptance and understanding.

I think autism is simply passed down in the genes in the same way left-handedness is. (Remember how that was seen as wrong and needed fixing? Brain scans prove the brain is arranged differently. It shouldn’t be seen as a fault.) My father was left-handed. My younger sister is left-handed. I am not left-handed, but I expect I carry the gene. When two people carrying a gene get together the likelihood of a child presenting with something is greater. I was bound to have blue eyes, for example: both my parents had blue eyes. I think both my parents had autistic traits too. But they were undiagnosed and most people would not have suspected it.

I can’t speak for all people with autism and their families because some of my traits are mild and, being on the high-functioning/Asperger’s side, some don’t even exist. And I can’t speak for all the children struggling to fit in right now who haven’t yet learned to love themselves and feel glad they found joy in their own uniqueness and their own way of appreciating life. Many will, though, and I wish I could show them the future.

I can’t even speak for all the people with high-functioning autism and Asperger’s – because, just like everyone else, we are all individuals and we all struggle and cope differently with different situations. But what I don’t want the world thinking is that we all need fixing, and that people like me should never have been like me.

Here’s the reaction from someone recently when told by my husband that I have Asperger’s: ‘I’m sorry to hear that.’
Why is he sorry?
Well he’s sorry because he sees it as a problem. And unfortunately being made to feel like a problem is a massive cause of stress for us.

You don’t have to have autism to struggle or cause other people problems

I, incidentally, believe I am not a problem. In fact know I am not. I am a loving wife and mother. I work – albeit from home – and contribute to the running of the business. I have a huge, huge heart, I cook, I clean, I garden, I grow food for my family. I made sure I read to all three of my children every night until they were old enough to read to me (and even then I still read to them when they wanted me too), I gave them books, paper, art materials, healthy food, plenty of outdoors play. I was their main carer for many years. I keep them warm and let them be themselves. I assess every situation every day in life and decide what is needed of me. I fill in the gaps where my husband has short-comings and he fills in the gaps where I have short-comings. I believe we compliment each other. I am musical, creative and imaginative. I can write, play the piano and play the flute. In the last few years I have completed 13 Open University modules and gained a degree, a literature and writing diploma, published a book, taught myself to grow things and use a camera. I believe a lot of what I have achieved is partly because of being an Aspie, and partly despite it. The things that make me uncomfortable I try to avoid, and I try not to let others be too affected by my behaviour. Mostly this has become more successful since accepting Apserger’s and explaining myself to my family. When I do have days when I struggle, I can see how trying to place myself in the outside world is the problem. In the smaller world that I/we have developed at home, I am not a problem. But you don’t have to have autism to struggle or cause other people problems. I often think neuro-typical people cause autistic people as many problems – if not more – than we cause them, because we’ve had to try to understand their world.

I have worked hard on figuring out why for years I did feel like I was a problem and I have found it’s only to do with other people and a lack of understanding that makes me a problem. So, in essence, it isn’t all about me.

It breaks my heart that people think people like me are like me because something went wrong.

Read my blog, look at my photos, look at my garden, my children, my life: tell me what’s so very wrong with me? If you took away my autism, sure, things wouldn’t bother me so much, but surely we need people in our world who are deeply bothered by things and intent on solving and resolving things. Cure ignorance not me.

And please, please, please don’t be sorry.




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