Why wouldn’t you want to be autistic?

Last week a number of newspapers reported that scientists were “on track to establish the genetic triggers for autism, paving the way for earlier diagnosis of children who could be at risk of developing the condition and opening up the possibility of inventing new drugs and treatments for the condition”. Personally, “on track” sounds like the breakthrough wasn’t anywhere near immediate, but next to the article was a box in which a mother of two autistic children said she didn’t want the condition eradicated, although she wasn’t averse to genetic counselling but rejected the idea that autism was an illness that needed curing. Similarly, after the story about Andrew Wakefield being struck off the medical register last month, there was a letter from Sarah McCulloch (and on the paper’s website here) saying that autism wasn’t an illness, that she as an autistic just thinks differently finds it difficult to understand how others think, and “if others find that distressing, that is their problem, not mine”.

I agree with them to the extent that autism isn’t an illness in itself. But I reject the notion that the only problem autistic people have is others’ difficulty accepting them, which they should just get over. A lot of blogs are full of talk about autistic “pride” and “neurodiversity” and the organisation that partly funded this research, Austism Speaks, is commonly attacked for really representing parents of autistic children, not autistics themselves, and for supporting research so as to do away with autism. The idea that you might not want kids to be autistic is kind of like saying you want autistic people strangled at birth.

Why wouldn’t anyone want their kids to be autistic? Perhaps because they really want their kids to be able to interact with others normally, to have the same kinds of relationships they enjoy, not to have obsessions or obsessive interests which puzzle or disturb everyone else, not to have dietary intolerances which cause serious behavioural disturbance if you don’t cut out much of what most people eat (milk and wheat are common ones), not to require a rigid routine which gets imposed on the rest of the family, not to get distressed at the smallest change in circumstances, among the other difficulties autism and Asperger’s syndrome cause people with them and their families. Maybe they don’t want their kids to become targets for school bullies and vicious teachers (OK, you don’t have to be autistic for that to happen, but it helps), let alone cruelty from other members of their families (consider what Donna Williams wrote about in her book Nobody Nowhere for example).

People often talk about the “social model of disability”. Disability isn’t the problem, it’s (other) people, or places. (I wrote about another inappropriate application of it in February.) But it’s much easier to adapt a building to accommodate a wheelchair, or install software onto a computer so it can read text to a blind user or take input by voice from a quadriplegic than to change many people’s attitudes and responses to strange and challenging behaviour. In an ideal world, people would accept and understand, but we don’t live in one. On top of this, while there are families like Luke Jackson’s (here’s his Mum’s website) where a parent will take the child out of a stressful school environment to educate them at home, not all parents can, or will, do this.

I know the autistic bloggers who talk about “neurodiversity” speak from personal experience, but so do I. I’m not sure what caused my condition — I had a minor birth injury (my head got squashed coming out, and for a while resembled a policeman’s helmet as my mother told me) and later on developed severe thyroid deficiency, such that by the time I was five, I was the right height for a two-year-old, had tantrums over things other kids would not have noticed, couldn’t interact or play with other kids other than on my own terms and with strange games I invented myself, couldn’t tolerate being told what to do or to stop doing something, and as my school years progressed, I became a target for groups of kids who would surround me and taunt or, in later years, threaten me (and people didn’t get it that I was bothered that they were bothering or threatening me, not by what they were saying). I ended up getting passed from school to school, sent to special units which were inappropriate (such as a language unit for kids who had speech problems) and ended up in a “dump school” (a boarding school which was ostensibly a special school for academically bright kids with behavioural problems) where I was treated like garbage and people (pupils and teachers) behaved worse than animals (see here, here, here and also here for my latest run-in with that rabble).

I don’t believe all this nonsense about “neurodiversity”. Spinal cord injuries, cerebral palsy and M.E. are all part of “neurodiversity” as well — all part of the rich tapestry of life — just as long as you can feel and move your body, you can talk and be understood (or talk at all), and you’re not the one lying in agony in a darkened room for years on end (not much diversity there). Yes, it’s true that some autistics (mostly those with Asperger’s) have been great scientists and mathematicians, but there are also those who are simply muddling their way through life, those who can’t find work and those with unresolved stress issues stemming from traumatic childhood experiences and besides, not all autistics are high-functioning Aspergers types by any means. Yes, I believe in integration and all that, and besides, some of the things that would make life easier for people on the autistic spectrum would actually make life easier for everyone. But that doesn’t mean I’d want anyone else, let alone a child, to go through what I did (and others have suffered much worse). Research into the causes of autism isn’t to rubbish the achievements of people with autism, it’s to save future children and their families from a lot of confusion and distress.

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  • M Risbrook

    I’m not sure what caused my condition

    Have you officially been diagnosed as autistic?

    Something to take into account is that knowledge of autism back in the 1980s and 90s (in the UK at least) was primitive compared to that of today. As a general rule, if an individual had no speech or language issues, had average general knowledge, few problems with reading or basic maths, and you could hold a conversation with them, then they would not have been considered autistic although they could have had high functioning autism or Asperger syndrome. These conditions were not known about at the time which resulted in many children and teenagers being misdiagnosed with schizophrenia or behavioural problems and often sent to unsuitable schools.

    Please do not delete this comment.

  • My son is severely autistic and I probably have either Asperger Syndrome or Dyspraxia. I argue for a social model of disability and push hard for people to change their attitudes. The only suffering my son and I experience is down to the ignorance of others and inappropriate environments. My son has been fortunate in that I’m a trained autism educator (Birmingham University, 1997), but I experienced a childhood of mismanagement due to ignorance - my poor motor skills, personal disorganization and social problems were labelled “bad”. I think we both make a contribution to the world - my son through his ability to experience and share great joy, me because my “obsessive” nature permits me to become a genuine expert where others often just aquire sufficient knowledge to appear competent. Wouldn’t the world be a poorer place without us?

  • There are benefits and disadvantages either way, and it would be a concern if the disadvantages outweighed the benefits, as is the usual case in frank autism. I have Asperger’s and, as an example of my impairments, I find it difficult to carry out tasks without clear instructions, but at the same time I find it easier to interpret instructions than most of the people around me, who for example struggle with manuals. I really don’t think I would want to have turned out normally, since my condition allows me to be good at certain things that I like and for which I think people respect me. On occasion my condition impairs my ability to function socially, and I think when I was younger I would just blame others for not being able to understand, etc, but I think we also need to understand that we need to take steps ourselves to make our presence more of a positive experience for others. One issue I have is not knowing whether I should or should not tell the people around me. I think I have offended some of my friends in the past by doing things they perceive as being inappropriate, eg not going out with them, but if I did tell them I think it would compromise them taking me seriously in general.

  • Salaams:

    Reminds me of a book I once had, “Schizophrenia as a Lifestyle.” .-= Safiyyah´s last blog ..Dua for the First Fruit of the Season =-.

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