Offended by the idea of a cure?

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I really, really did not want this to end up being a heated discussion. But. That is one of the most hypocritical things I've ever heard. Why is in Aspie good enough to stay who they are but not a classic autistic?

Yet I still keep seeing people get really offended at the thought of AS being portrayed as a disability rather than a gift. People who think that the idea of having a cure is a personal attack aimed at anyone having AS. Like anyone without AS who is pro cure must somehow hate people with Asperger's and want them wiped off the face of the earth.

Autism is worse than cancer in many ways, because the person with autism has a normal lifespan.

In recent committee hearings in the Canadian Senate, a man called David, who refused to give his last name, was invited to speak. He said: "I appreciate this opportunity to speak on behalf of Canadian people with autism". David is not autistic. He has an autistic son called Adam, and is a big deal in the "autism community" of autism societies and pressure groups and volunteer-martyrs. David, in this hearing, is so emotionally compelling, so brave and beaten-down, that nobody notices he has horribly mistreated his son and is now defaming him. David describes Adam, who like many autistics suffers from exceptional academic achievement, forcing the cancellation of David's "international business trip" by yelling at his parents, "Why don't you kill me? Why don't you kill me?" In the highlight of David's testimony, we see that Adam is merely perceiving reality accurately. David says, "Autism is worse than cancer in many ways, because the person with autism has a normal lifespan." To improve the situation, David is saying, we need to make autism fatal. Then it will only be as bad as cancer.

For me, it depends on what's meant by cure. Many researchers are looking at genetic causes in the hopes of developing a prenatal test (like the one that exists for Down Syndrome) so that mothers' will be able to abort people who will be born autistic (currently 90% choose abortion when the test comes back positive for Down Syndrome). Saying that being autistic is so bad that we should be killed before birth because our life isn't worth living is what I find offensive. I think one site said something like "autism is worse than cancer because the person survives."

Other than that, I support searching for a cure to treat environmental causes of autism. I want to be accepted for who I am and not be forced to change or forced to take dangerous drugs to treat abnormal behaviors that intolerant people find annoying. But at the same time, I want to be cured so I can enjoy life more. I think we should all try to improve our weaknesses and look for causes for our problems so we can be cured of them to improve our lives.

I really, really did not want this to end up being a heated discussion. But. That is one of the most hypocritical things I've ever heard. Why is in Aspie good enough to stay who they are but not a classic autistic?

(I can now tell from the first comment that people who do not want all autistics to be of the same general type may take offense at the question. If you’re not doing this, you’re not the person I’m asking the question of. There are plenty of autistic people who do think that all other autistic people want to be roughly like them.)

This was the question I was asking when I wrote The Oak Manifesto. But it was not just a question directed at non-autistic people.

Non-autistic people do frequently hold the opinion that everyone must want to be like them. That, in fact, those of us who think non-autistic people do a good enough job being non-autistic but that we’d rather be autistic, are just repressed, in denial, hiding something from ourselves. Many autistic people have written and spoken eloquently about why these opinions about us are false.

But few autistic people have taken on the same opinion when held by autistic people about their own — real or perceived — category of autistic people. It is taken as a given that certain ways of being autistic are just self-evidently better.

When I was a child, my life was being directed by those around me — without knowing it, just as “what people should do” — towards the more valued category of autie. This is not how they saw it of course, not in those terms. They saw it as being all that I could be and fulfilling my potential. But I was being guided in the direction that, unchecked, leads to the “‘valuable’ and geeky even if socially inept” sort of person.

Puberty is when among other things your brain shifts around to its adult form. If my real potential lay where everyone thought it did, I suspect my brain would have shifted more in that direction. It had its own ideas about who I should be, though, and shifted in such unpredicted ways that not even I could fully recognize myself. In hindsight, though, even as a kid I saw things going very wrong that nobody else saw and I suspect the drastic shift was partly about righting those wrongs and putting me on the course I was meant to be on. Not that any of us recognized that at the time.

At any rate, it has become more apparent over time that I am who and what I am supposed to be. (In at least four dimensions, for those who view that in only three, leave out time, and assume stagnation is implied.) Right now, I am no more meant to be the stereotype of “HFA/AS” than I am meant to be non-autistic. I stand a better chance of becoming that stereotype than I do of becoming non-autistic, but so far there is little sign of either one happening.

There is an increasingly common view among autistics that I am just an aspie (I’ll use that term within this entry as a shorthand code word for that stereotype, apologies to those who use it differently) with “co-morbid conditions” making me “low-functioning” but which could be cured to release my inner aspie. That basically I am an aspie with defects. By this viewpoint, I could not possibly object to curation because it’s not autism they want to remove, just co-morbidities. Then I could be healthy and happy. Like they are.

The first thing I object to is the term co-morbid. That term implies a negative condition going along with another negative condition. It puts all conditions described, including autism (that’s the “co-” part), in a negative light and a highly medical perspective. It simply does not belong in use here.

The root of my objection, though, will be familiar to most autistic people. Autistic people are not just non-autistic people with good things taken away or bad things added. We would lose things deeper than personality if it were possible for us to become non-autistic. Non-autistic people think often, though, “All cure would mean is taking away these bad things, what’s the fuss?”

Well I simply am not an aspie stereotype with good things taken away or bad things added. If I ever became an aspie stereotype I would lose things that are deep down and important to me. Spending my time aping that stereotype (if possible at all) would be just as draining to me as passing for non-autistic is for people who can manage that.

By this I am not saying that “aspie stereotype is to my kind of autistic as non-autistic is to autistic”. I have far more in common in the areas that the word autistic has to do with, far more, with any kind of autistic person, than I do with the average non-autistic person. But there are different sorts of autistic people, too, and we do not benefit from being forced to act like each other or become each other.

By different sorts, I do not mean the traditional diagnostic guidelines. I certainly do not mean functioning level. I do not mean differences of opinion (sorry all who try to claim this, but “wanting cure” is not and will never be a true subtype of autism, it’s an opinion that crosses all subtypes, as does its opposite). I mean something deeper and harder to define and all but unrecognized by autism professionals.

I mean the reason that Joel Smith and I could instantly comprehend each other’s body language and thought patterns without having met before. I mean why Laura Tisoncik can similarly read Larry Bissonnette very easily, why Donna Williams said she and Jim Sinclair had something in common that not all auties do.

I mean why I can identify strongly with the writing and mannerisms and general patterns of several autistic people, and less with others, who might make more sense to each other than to me. These are reflective of some of the genuine similarities and differences between us, and they cross all official lines of categorization.

You can’t unwrap all these supposedly “co-morbid” conditions from me and release my inner aspie, any more than you can unwrap autism from any autistic person and release their inner non-autistic person. You can certainly look beyond your assumptions about appearances and perhaps see something far different than you initially realized, but that is not the same as us really having an inner NT or something.

Of course, you could divide me up that way. It would be really easy. You could say, “Okay, this person has symptoms of Tourette’s, catatonia, OCD, stamina issues, migraines, seizures, central pain, self-injurious behavior, and fill-in-the-blank for pages.” You could medicalize every single part of me but what you deemed the acceptable, autistic part, and you could try really hard to “fix” all those things (or in some cases imagined things) to release my inner aspie. But why are you so sure I have an inner aspie to begin with? And why are you so sure some of those things you’re trying to remove aren’t attached? (Here’s where I get told I’m advocating no medication for seizures, I bet. No.)

I’m saying the above simply because I know one of the common replies to this kind of post is “You must only be autistic and not have these other problems and just don’t understand how difficult it is, etc.” No. I just happen to view myself very differently than some other people with the same string of diagnoses and potential diagnoses. Don’t ever confuse viewpoints with diagnostics. So many people who remember that when it comes to being autistic and having viewpoints against cure, forget it when it comes to being the kind of autistic that everyone wants to turn into a different kind of autistic.

So no — to people who believe this sort of thing — I have no particular desire to be like you. No more, perhaps, than your desire to be like me, that you make so clear in your assumptions that it’s just plain better to be like you. I’m sure you’ve said similar words before, to non-autistic people. It’s also true that autistic people can convey similar concepts (words or not) to each other, as I am doing to you.

I will go through my life trying my best to be whoever I am meant to be. Who I am meant to be has often conflicted with the wishes of others, with the false constructs of proper lives that people’s minds come up with, with the values of any given society, and with many other things, not through any desire for conflict, but because of a steady and unyielding push in directions that are perhaps less traveled and less valued. This is not something I chose but it is not wrong. I am connected to the rest of the world, and I have a particular place in it, and I will do my best to be in that place, wherever it moves. The things I am saying here are not limited to me, nor am I claiming perfection or lack of struggle or hardship, merely that there are many roles to fill in the world and what people commonly think of as what people need to be doing is not always what we need to be doing.

Right now, my place is not to be an aspie stereotype, any more than it is to be a non-autistic person. Both have been expected of me at times, but neither has been all that forthcoming in the general plan of things.

Meanwhile, the way I am, the way all of us are, has a point to it. The point is not to make all autistics into copies of the ideal autistic any more than it is to make us into copies of the ideal non-autistic. We are different from each other for the same reason we are different from non-autistic people. And as usual, difference does not mean we need to be fixed or should long to be like those who think we automatically should want to be like them.

This is the kind of stuff I've yet to see.

::needs resources::

I've heard a lot about the evils of Autism Speaks. Never been there. Should I check it out or what?

The only possible cure is finding genetic markers that would have us selected for abortion.

I really, really did not want this to end up being a heated discussion. But. That is one of the most hypocritical things I've ever heard. Why is in Aspie good enough to stay who they are but not a classic autistic?

Oh also, forgot to add, the whole idea that "disability" and "gift" are opposites is pretty offensive to some people.

Let's take runners for instance. Just an example. Unless an Asperger person has had an Autistic child who's a runner, they don't know what's it like to be a parent of a runner and can no way speak for those that do. Runners seem to be unique to Autism. I don't know of any other childhood disability, including retardation, where there are runners. A runner is an Autistic child who gets sensory input from running.

Our therapist told us that with some kids the only way they feel connected to their bodies is when they run. Their feet hitting the pavement sends sensorial input straight up to the brain and they can actually feel themselves grounded to the earth and feel their bodies in space.

And, the problem is that traditional therapies don't always help and the kid may have to have an anti-anxiety med in order to cope. So I ask, why can't a parent dealing with this seek treatment for it without being accussed of not accepting the child or thumbing their noses at Autism? It is wrong for a high functioning Asperger person to think the parent is weak and can't accept the child simply because they want their child to LIVE. You may not like the word broken or cure, but hell yes I'd want to fix a kid whose wiring tells them to run into a busy intersection without fear and get hit by a car because of sensory input.

Walk a life in someone else's shoes and you will see things differently. You are all very fortunate that you only have Aspergers and many of you are independent and can live a life without a great deal of intervention or supervision.

Some are not so fortunate. Our therapists tell us that less than 13% of Autistics grow out of the major symptoms and don't need a lifetime of intervention. But, if anyone has a better stat than that, I'd embrace it. I'd be happy to know the number is higher.