Monday, February 11, 2008

Why Hillary Is Wrong to Support Autsim Speaks

Autism Speaks is an organization devoted to funding and lobbying aimed a finding a cure for autism and/or finding genetic markers that would allow fetuses with autism to be aborted before birth. At an Autism Speaks event, Hillary Clinton said that we need to, "cure or prevent anything along the autism spectrum." I wrote the following long-winded diatribe to explain to a friend why I think Hillary Clinton is wrong, but it also sums up a lot of my thinking about autism and how we react to it.

Autism is a collection of related traits. They can each be present to differing degrees. Like most traits, depending on circumstances, these traits can cause difficulties, or be advantageous, or both. For example, most autistic people have a propensity to abnormally high levels of focusing and concentration. This can result in great pleasure and great achievement, but it can also cause social difficulty and get in the way of being what we like to call a well rounded individual. Other traits include a higher than average perceptual sensitivity, which can result in both great distress and great awareness. Most autistics have an unusual way of processing language, and many autistic people have trouble talking, but there are also many who excel at it and some great autistic poets. As with handedness and sexual orientation, to give just a few examples of
easily noticeable traits of the same general class, these traits are underpinned by hardwiring in the brain.

I would expect these differences to take the shape of a larger or smaller concentration of a particular type of neuron in a particular part of the brain, or a difference in neuron length, or a physical difference in tissues that up-regulates or down-regulates certain types of signaling. I am fairly sure that several different differences result in similar traits, so autism can be caused by
different types of wiring differences.

These traits may also be co-present with other traits, such as those we label as ADHD, OCD and various cognitive impairments as well as those we label as drive, talent, genius, etc. and all the other run of the mill traits such as laziness, heterosexuality and what have you. However, it is particularly worth noting that what we are currently calling autistic traits often show up together with what we tend to see as mental or intelectual impairments. My guess is that they often share common causes. For, for example, the same wiring difference that produces intelectual impairments may also produce autistic traits. At the same time, a person can also be very intelligent and very autistic, reinforcing the idea that there are most likely many causes of autism.

Some people take it for granted that autism is always a bad thing, but I cannot agree. Famous people on the autistic spectrum include Steven Spielberg, David Byrne, Bill Gates and, though he lived too early to have a psychologist say so, almost definitely Albert Einstein. It is unlikely that these people would have been who they were or achieved what they achieved without their autism. Many autistic people have wonderful lives because, in part, of the great pleasure that their autism allows them to take in things that non-autistic people might find boring. Science is the classic example, but it is certainly not limited to that.

Some say that the social problems that these folks encounter, especially as kids, outweigh any positive effects, and therefore they would not wish it on anyone. I think a good analogy is homosexuality. If you are gay, you are going to have a more difficult (or at least more complicated) time, especially as a teenager. But that does not make me want to say that we need to find a cure for homosexuality.

I don't think that anyone thinks that being autistic presents no problems, though I do think that we often go overboard in pathologizing differences. Having problems is part of life and just because people with some traits may need help in specific areas, it does not follow that we should seek to eradicate those traits. Left handed kids often need extra help with handwriting as well as requiring specially strung guitars (except Hedrix, of course). Should we abort left handed fetuses? Jocks tend to suck at poetry. Do they need to be cured, or will education -- and where that reaches its limits, acceptance -- suffice?

I am a died in the wool social liberal (but a fiscal conservative with libertarian tendencies, in case anyone was interested) and I think that mothers should be legally able to abort on any grounds. So when I say I am against eugenics targeting autistics, I don't mean that this should be illegal. If parents are aborting because it turns out the kid is going to be blond, and they wanted brunette, that would be legal, but I'd say they were acting badly. When deciding whether screening for traits such as autism is acceptable, it might be useful to ask ourselves, if there were a prenatal IQ test, would we use it? What would be our cut off? Would let our kids grow to term with a projected score of 100+, or hold out for 120? What about tests for height, breast size, lung capacity, early cancer, etc. Would we favor all of those, or would we say que sera sera?

It's a matter of what we consider acceptable. And people in Autism Speaks in general, and Hillary Clinton is specific, do not see having an autistic child as acceptable.

But it's not so much the the actual eugenics that causes problems, it is the implication. If you say, as Hillary does, that we should "prevent anything along the autistic spectrum," then you are saying that it would have been better if no one on the autistic spectrum had been born. How much importance do we attach to those who society says would be better off dead? How likely do you think we are to respect the rights of those who we say do not even have the right to live?

As for the issue of cure, it's a false issue, but one which presents very similar problems. I say that it is a false issue because, not only is there currently no cure for autism, but there will never be a cure for autism. You will get cures for a number of discrete conditions that also cause autism, you may also get pharmaceuticals that make certain things easier for many people with autism, but you'll never get one pill that removes all autistic traits from everyone who has them. You cannot rewire the brain with a pharmaceutical. But the idea that such a cure is possible (and the folks at Autism Speaks, who have as much understanding of science as John Kerry has of showmanship, are actively promoting this idea) is in itself damaging.

The thing is that you then see the autistic individual as a "person with autism." That is, you see them, not as a person whose personhood includes various traits, but as a person whose true personhood is obscured or hijacked by a disease. The autistic traits, which are now seen as parasitic, are repressed and given no respect. So, "look at little Johny, he is totally into dinosaurs, he knows more about them than anyone in the school," becomes, "Johny has a dinosaur fixation. Hopefully he can be cured at some future date. In the meantime, be sure not to encourage it."

Another sad fact is that many of the parents of autistic children who are involved with Autism Speaks also engage in a wide range of quack cures. Rather than say, "This is our kid, how can we help him to make the most of who he is," they say, "A disease has kidnapped our kid. We've got to cure him now!" They are not willing to wait until the cure is available in the drug store. Some of the stuff they do is fairly harmless diet based stuff. Other quackery is more dangerous and a number of kids have been killed by it. The real damage is, however, that each time these parents see their kids grow up, make progress and master things that they could not do before, the credit goes to the quackery. How sad for both the kids and the parents. Of equal concern is the fact that, having only limited resources, parents who listen to Autism Speaks may spend those resources (money and time) on quackery rather than education. So instead of two hours of speech therapy a week, the kid gets twenty sugar pills a week at ten bucks a pill. Instead of signing up for a special needs summer camp, they sign up for a two month hyperbarric treatment program.

Now, when people hear about the autistic community rejecting the notion of a cure, it is often assumed that they mean that nothing should be done to help autistic people have an easier time of it, and realize their full potential. Nothing could be further from the truth. Those who see autism as traits are usually also those who see the greatest potential in autistic folks, and who focus on the positives. These people, having high expectations of autistic people, tend to provide more opportunities for growth. Those who see it as a disease that we need to wait for a cure for, are more likely to have low expectations and to focus on managing autistic people as they are.

The bottom line is that the folks at Autism Speaks don't like autistic people. They want to rid the world of them. That's not cool.

7 comments:

Autism Reality NB said...

Your post is little more than belittling of those who disagree with your views, such as the parents and others who support Autism Speaks.

You emphasize a "positive' view of autism. That is your right. But autism is a diagnosable disorder for a reason. Many children with actual Autism Disorder diagnoses will not go on to live independent lives. That is not a positive thing in my view. Some also engage in self injurious behavior and have limited communication skills. Not positive in my view.

VAB said...

It is nice of you to drop by, Harold. I appreciate your concern for the feelings of those who disagree with me. I was, in fact, aware that this post might give offense, or at least pause, to some (Hillary, are you reading this?). I imagine that most have thick enough skin to be able to handle it.

I understand that you work very hard to promote your particular view of autism and what you consider to be the best responses.

Marla said...

Interesting post. I am sure it will get a variety of responses. I have yet to decide who I will vote for.

We have had our daughter genetically tested and I do wish more parents could have their children tested. I see genetic testing as providing some answers and possibly better treatments and diagnosis in the future. I would hope that people would not abuse the knowledge brought through genetic testing but I am sure that is a risk.

abfh said...

This is a very good summary of the cure and prevention controversy.

I'd like to point out that when Autism Speaks promotes the idea that a cure is possible, it is not because they do not understand the science. Rather, this is deliberately crafted propaganda. Because most Americans are decent people who do not support their goal of aborting all fetuses with genetic markers for autism, the only way that Autism Speaks can attract any donations is by intentionally misleading its donors into believing that the money is being used for a cure.

This is a common fundraising tactic that has been used to develop prenatal tests for many other conditions, such as, for instance, muscular dystrophy. The telethon has been going on for over 40 years and raising more money each time. None of the researchers are even close to finding a cure for muscular dystrophy, but every year the prenatal tests get more accurate.

Susan Senator said...

I only want to clarify one thing you say, which is that Autism Speaks is only interested in curing autism. While it is true that they emphasize research into treatment, and that they began as a "Stomp out autism" campaign, and their terrible "Autism Every Day" vid, their leadership is becoming more wise to what the needs actually are. We parents need educational supports and strategies; autistic adults need a world that understands and supports them.

Given this, AS is now completely committed to improving the world for those who are autistic. I am on a subcommittee there calling itself "Autism Works," and they are all about working with employers and adult service organizations to facilitate employment and adult supports. No one was talking about a cure or anything negative about autism. In fact, just the opposite. AS is looking for adult success stories to publicize for this imminent campaign.

Last meeting, I and others also suggested bringing some autistic adults on board. I made a few suggestions. I thought I remember hearing that Stephen Shore was already on the board of AS. I believe and hope that this will happen for our subcommittee, because we desperately need that perspective.

Maddy said...

I'm finally catching up [I hope!] Nip on over and collect your award [Less than three award] when you have a free nano second.

[That would perhaps be sometime in the next few months if you're anything like me?]

Best wishes

VAB said...

Susan,
I am very happy to hear that I was not giving Autism Speaks a fair shake. I hereby retract 60% of my righteous indignation.

Maddy,
You are a real chum. Thank you! It is an honor. (Or should I say honour?)