Life on the Spectrum

Archive for November, 2012

What do people mean when they say they want a cure?

As an autistic person who does not wish to be cured, I’ve run into a lot of people who insist that curing autism is what’s best for autistic people, especially children. They point out various problems that they or their child have, using those problems as a reason they think autism must be cured.

What they don’t seem to realize is that what they are talking about is symptoms. They want symptom relief. If we could treat the symptoms of autism, then maybe there wouldn’t be as much of a push for “cure” as there is now.

One article I read that proclaimed the absolute need for an autism cure, and the author used the example of an autistic man who happened to be a brilliant pianist yet also happened to be incontinent. There was speculation that curing his autism might rob him of his ability to play the piano, and playing the piano made him happy. “But surely,” the writer proclaimed, “he would be just as happy, or even happier, if he were unable to play the piano but able to control his bowels! This is why we need to cure autism: so this man no longer needs to wear a diaper.”

Well, first of all, it seemed that no one had asked this man himself what he wanted. The writer of the article did what many autism curebies do: he made an assumption based on his own experience and projected it on to the autistic man. Perhaps this fellow is perfectly happy the way he is.

Secondly, has this writer ever noticed that there are non-autistic people who have problems with bowel and bladder control? Has he ever met a neurotypical person who is incontinent? Does he propose we cure neurotypicality because some neurotypicals are incontinent?

Maybe we could do some research into the causes of incontinence, and we could attempt to treat or cure incontinence rather than cure autism, and then this pianist would be able to continue doing what he loves, playing the piano, while being able to control his bodily functions.

Another example I was given when I said I do not wish to be cured was that of an autistic man who suffers from severe anxiety. He is unable to leave his home because of this anxiety. The person who told me about him implied that I was being cruel to people like this because I don’t want to be cured, as if there is already a cure out there, but because I don’t want it I am somehow denying it to other people.

Again I wish to point out that there are non-autistic people who suffer from anxiety as well as autistic people who suffer from anxiety. There are days I don’t want to go out because I’m afraid that while I’m gone something will happen to my cats, and I come close to convincing myself that I must stay home 24/7 in order to keep an eye on them. I would love it if there were a cure for anxiety. This doesn’t mean I want a cure for autism. What I want is a cure for anxiety. But apparently, because there are autistic people with anxiety problems, we have to cure the autism in order to treat the anxiety. No one ever suggests that we have to cure neurotypicality in order to treat neurotypical people who have anxiety disorders.

I have heard from men on the autism spectrum who insist that they want to be cured of autism because they don’t have girlfriends. I would like to point out to them that even if they were cured tomorrow, a girlfriend is not going to show up on their doorstep five minutes later. They will probably have to work to find these elusive female partners, the same as non-autistic people. There are plenty of autistic people who have partners; there are plenty of non-autistic people who do not have partners.

Sometimes I think that when it comes to talking about autism symptoms and autism cures, people are missing the trees for the forest. They see this big, intimidating forest — autism — and miss the individual trees — the symptoms that they are concerned about. They don’t bother trying to treat the symptoms because they are so focused on curing the autism, or they believe that they are unable to treat these symptoms without curing autism first. This would be like my not taking my insulin to treat my diabetes because we can’t cure diabetes yet.

I wish that some of these piles of money that are being donated to find a cure for autism could be redirected to find safe, effective treatments for the symptoms of autism, or even for symptoms that affect both autistic people and non-autistic people. If the symptoms were dealt with, perhaps there wouldn’t be so much of a push for a cure, because we would have autistic people (and parents) who were happier and healthier without having to be “cured.”

Stop hating

A few days ago I was asked whether I loved autism or hated autism. I said that I don’t hate autism, and I don’t love autism. The person who asked me this question then asked what I might say to someone who hated autism, especially their child’s autism or their own autism.

My reply was that autism doesn’t care if you hate it. Autism isn’t a person. Autism doesn’t have feelings, and it’s not going to go away just because you hate it.

Hating autism isn’t productive. I can certainly understand being frustrated by autism, being annoyed by autism, being tired of autism. I can understand how frustrating it can be when autism prevents you from doing something or makes it difficult to do something that non-autistic people find easy to do.

However, I believe that hatred is poison. Hatred is not productive. Hatred doesn’t hurt autism, but it may hurt the person doing the hating, and even worse, it may hurt an autistic child. You see, a child isn’t going to understand that it’s the autism being hated. The child will think that he or she is the one being hated.

I have always said that autism is an integral part of a person, that there is no separating the person from the autism or the autism from the person. If you hate autism, then you are hating something that is a part of a person’s identity. If I hate autism, then I am hating a part of myself, and I don’t want to hate a part of myself. If I had an autistic child and hated the child’s autism, then I would be hating part of who my child is.

I won’t tell people to not get frustrated or angry or just plain fed up with the effects of autism on themselves or their children. I will ask them to stop hating. Stop using the energy for hatred and turn it to something more productive, like working with an autism therapist on the things that make you frustrated, angry and fed up.

I also think it’s okay to vent. Venting is a way of letting off some of that negative energy, especially if you vent to people who understand. That’s one way in which the internet is helpful to autistic people and to parents of autistic kids. We can find others in similar situations and vent to them, and they will understand.

So please, don’t hate autism. I’m autistic, and I don’t want you to hate me. Don’t make your children think you hate them, either.