Autism awareness needed in order to raise understanding

DON’T DO IT!!!!

Walk Now for Autism is the major fundraiser for Autism Speaks. Although the name implies that this organization is aimed at helping those with autism, this is not true.

Autism Speaks does not hire anybody on the autistic spectrum. Apparently people with autism are not qualified to work for an organization like Autism Speaks. Funny.

Autism Speaks is mainly a fear-mongering organization. You’ve certainly seen their advertising, in which they spout frightening statistics (1 in 150 children will be diagnosed with autism… better get yours checked today!). They put up videos featuring children having horrible meltdowns and call for a cure. Sure, a cure sounds good. But when you realize that autistic spectrum disorders are neurological differences that come with pros as well as cons, you have to think about what effect a “cure” would have. I cannot imagine who I would be if you were to “cure” my autism. I can’t separate myself from the way that I think, perceive, and interact with the world. No matter how frustrated I am about my limitations (and the discrimination that they bring), I would still turn down that “cure.”

Speaking of a cure… Did you know that there are over 100 documented cures for autism? None of them work. Not a single one. Take a closer look at those cures. Most of them are expensive and time-consuming. The expensive part is a nice bonus for the clinician. The fact that most of them must be consistently used for months or even years before results are expected lends them validity. Of course your kid is going to show some developmental improvement after a year of that therapy. The kid is a year older and would have improved the same anyway!

The “cures” that do work are things that help an autistic person deal with their disability and the world. Therapy doesn’t fix the problem, it gives the autistic person tools to better deal with the problem.

But Autism Speaks continues to dwell on “cures” that will end autism altogether. The only way that will ever happen is if they find some marker that they can screen for in utero and then abort affected fetuses.

I AM A PERSON WITH AUTISM, AND AUTISM SPEAKS DOES NOT SPEAK FOR ME!!!

So don’t raise funds for autism is what you’re saying? I’ve heard many things about Autism Speaks and I have yet to see any proof. The couple who started the organization are grandparents of children with autism, so I highly doubt these conspiracy theories about the organization.

I’m glad you are fine with your disorder, and I love my brother for who he is. But the fact remains that he has to deal every day with children and teachers who do not understand him and therefore feel the need to make his life hell. I want my brother to be happy. I have no doubt that he will be hugely successful because he is incredibly bright and has mounds of potential, but that is not going to stop me from bringing awareness to the struggles he has to go through every day.

Also, you spelled my name incorrectly. There is no H.

“So don’t raise funds for autism is what you’re saying?”

No, what she’s saying is to be aware of what your donations fund. If they’re funding awareness and therapy, that’s great. But if they’re funding bogus research and development of so-called “cures,” that’s a load of BS. Kristin is advocating being smart and doing research on your charity, which seems perfectly reasonable to me.

Did I say that I’m fine with my disorder? No. I would love to be able to walk into a crowded room and not have to leave. I would love to not be left out. I would love to be able to go shopping without assistance. But there are other parts of it, like my different ways of thinking and my creativity, that I would not give up. The fact remains that I cannot separate myself from the disorder, so I would choose to not lose myself in losing the disorder.

And I also wholeheartedly agree that money needs to be raised to assist people with autism and also to research things that can be done to make life better for both children and adults with autism.

Check out the Autism Society of Michigan if you are looking for an organization to raise money for. They employ people with autism and they work locally to help people with autism. They hold an annual Autism Awareness walk, which will be May 9 this year.

We need to be careful of falling into the “raising awareness” trap. Some organizations collecting money for diseases spend far too much on raising awareness and far too little on research. This in itself is not inherently bad, as raising awareness for things like breast cancer (where there are actual efficacious treatments) saves lives by encouraging people to get themselves examined. However, for something like autism where there is no real treatment, raising awareness does very little for those already effected and does not advance us towards any real treatment.

But I digress from my main point. We need to be careful about what kind of awareness we are raising. If we donate money to a group that suggests that vaccines cause autism, our money is being used to misinform people in such a way that could result in deaths. That’s not the kind of awareness I’d like to raise.

Oops. Typo. It was late last night. The walk is titled “Walk for Autism Acceptance.” The people who come to the walk love their kids for who they are, and aren’t busy trying to find the latest government agency to blame for poisoning their kids. The walk is about people with autism being legitimate members of society that have something to contribute, not about curing people with autism (which in itself implies that it’s a problem to be fixed, rather than a difference to be worked with).

Kristin: I agree with that last sentence quite a bit. Though it would help if we drew a line to distinguish something that is medically pathological (a disease in the strictest sense of the word) and something that is a problem that needs to be fixed, as you put it.

There is no doubt that autistic individuals bring something different to the table and are able to contribute. But, in the most technical sense of the word, autism is a pathology in that it is generally (though not exclusively) maladaptive. Persons like you, who are able to form elaborately coherent arguments, tend to be the exception rather than the rule.

Since science knows so little about autism, it is highly likely that people who we classify as having “mild” autism or “severe” autism (whatever that means) actually have two different pathologies. That is part of the problem with autism: it is hard to pin down any specific causes, nor are we able to clearly define its requisite sypmtomology.

There is no question that alcoholism contributed to the work of Fitzgerald, or that schizophrenia was a great part of what Van Gogh became. But it doesn’t mean that people should have to suffer so that they might contribute to us or to carry the burden of their group’s dignity. I think this might be where we disagree: Though you see your autism as a difference to be worked with, many others see their own autism as a problem to be fixed. It would be a shame if we didn’t at least research it with the intention of finding a cure just to avoid hurting feelings.

Or maybe we actually do agree. My previous conclusion (regarding our disagreement) may have been a bit premature.

Zack Colman is an idiot and Asperger’s Syndrome should not be used as an excuse.