Life on the Spectrum

Archive for January, 2013

There is no such thing as a “voluntary” cure

I recently read a book by a woman with Asperger’s who said that she does not wish to be cured, but she would support the idea of a voluntary cure — that is, if a cure for autism were to be found, she would be in favour of the idea of curing people who wished to be cured.

The problem there is, there is no such thing as a “voluntary” cure.

if a cure became available, it would be given to autistic kids who are too young to make a choice for themselves. The “autism parents” I encounter online generally want their kids to be cured, and you can’t really blame them when you are aware of the challenges faced by autistic kids. Most parents want what they feel is best for their kids, and most parents sincerely believe that a cure is what’s best for their kids. Of course, younger children aren’t able to decide for themselves whether they want to be cured or not, and it’s unlikely that their parents would wait until they were old enough to decide.

The cure would probably be given to non-verbal adults who can’t speak for themselves or who are considered to not have the cognitive ability to decide for themselves whether or not they wish to be cured — the ones who are often called “low-functioning.” The problem is that this assessment of “low functioning” is based solely on observation rather than on a person’s actual cognitive abilities. Many autistic people are given this label simply because they can’t talk.

Of course, people will ask: “What’s wrong with curing low-functioning people?” It depends on what you consider to be low-functioning. Where do you draw the line? I never hear of “medium-functioning” or “moderate-functioning” autistic people. I hear only of high- and low-functioning. Where does “low-functioning” end and “high-functioning” begin? For many autistic adults who are considered high-functioning, their functioning level can change depending on things like fatigue, hunger/low blood sugar, stress, having their senses overwhelmed, etc. Also, as I said, if the cure is to be voluntary, then simply curing someone because they are considered “low-functioning” without their input is not exactly voluntary.

People who are accessing government services for themselves or their children for autism — for example, funding for intervention/therapy or help with life skills — would face having those services taken away because there is a cure available and therefore autistic people don’t need services anymore. When money is tight, as it always is, governments go on a cutting spree, and services to disabled people are almost always on the chopping block. So if you’re autistic, or your child is, and you want help, you’ll be told to go get yourself or your child cured because the government isn’t providing services anymore. They will probably say, in order to make you feel bad about asking for help, that they are going to spend the money on people for whom there is no cure — say, people with Down Syndrome, for example — and how could you not want these people to have services? Even such a thing as disability benefits would probably be contingent on going and getting cured.

Another concern I have about voluntary cures is the number of people who want a cure because they are depressed. They believe that autism is the cause of all their problems, and if they got rid of it, then everything would be sunshine, lollipops and rainbows. I’ve encountered male Aspies who want to be cured because they believe they will never have girlfriends as long as they have Asperger’s, and if they were cured then women would be apparently lining up at their doorsteps wanting to date them. My belief is that if an Aspie were cured, that doesn’t mean that they’re going to wake up with all their social skills and dating/relationship skills intact immediately, with no effort or work on their part. Even NTs have to learn social skills and relationship skills. They don’t just appear overnight. I know plenty of Aspies who have partners and plenty of NTs who do not. Also, depression might not go away simply because a person no longer has an autism spectrum disorder. I’m afraid that the person who wishes to be cured because they are depressed might find that things are not magically improved simply because they have been cured of autism, and then they could be even more depressed. They might discover that they actually liked the way they were before they were cured, but the cure is not likely to be reversible.

In my ideal Aspie world, we would not jump to the conclusion that an autistic person needs to be cured because they are depressed. Instead, we would treat the depression. We would not say a person needs to be cured because they have difficulty with social skills; instead, we would teach them social skills.

Some autistic people live in group homes or other assisted-living types of arrangements because they are unable to live independently. I’m sure that’s another reason given for wanting to cure autism. But what if the person is happy in their living situation? What if they don’t care whether or not they live independently? Why fix what isn’t broken?

There may be an autism cure one day. It may be called “voluntary.” But I doubt very much that it actually will be voluntary, at least not in the way that I understand the meaning of the word “voluntary.”

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You don’t outgrow autism

Recent articles like this one (http://www.bbc.co.uk/news/health-21029593) state that children may “grow out” of autism.

I’d like to tell these people that I’m 44 years old, and I have not yet outgrown my autism.

Children (and adults) can lose symptoms. With proper therapy and education, autistic people can learn to behave in ways that are almost indistinguishable from non-autistic people. However, that does not mean they are no longer autistic, because autism is wired into the brain. They simply appear to not be autistic.

I think the difficulty comes in the diagnostic criteria. Right now there is no simple medical test that can prove that someone is autistic. The diagnosis is made by observing behaviour. When an autistic person no longer behaves in what is considered to be an autistic manner, then if you’re going by behaviour alone, that person wouldn’t be considered autistic.

I’m sure that most people who know me wouldn’t have any idea I’m on the autism spectrum if I didn’t tell them. I’ve had people tell me I’m too intelligent to be autistic. I’m too social to be autistic. I have too many friends to be autistic. I have a job, therefore I cannot be autistic. I have a boyfriend, therefore I cannot be autistic. All of these observations are based on outdated stereotypes of what autism is.

I compare my autism to my diabetes. If I test my blood sugar, inject my insulin, watch what I eat and get some exercise, I don’t show any symptoms of diabetes. Does this mean my diabetes has gone away? No, of course not. My pancreas still isn’t producing insulin. I don’t think anyone would ever say that I don’t have diabetes just because I’m not showing symptoms at a particular time. But diagnosis of diabetes is based on actual medical tests, and as I said, there is no one, single, infallible medical test for autism, and there won’t be unless brain imaging is done on enough people diagnosed with autism to show what exactly it is in the brain that causes a person to be autistic.

A person can stop having symptoms of autism, but I don’t think they can “outgrow” those symptoms. A child who received absolutely no therapy for their autism probably would not stop having symptoms just because they reached a certain age.