Autism Awareness Month rant

I’ve been very busy lately with classes and secret projects and children who are on Spring Break (oh my!) and such, but there are a few things I’ve been thinking about that need a little space.  Last year, around this time, I had an Autism Awareness Month contest. I asked people to donate to the Autism Research Institute to be entered into a raffle.  I won’t be doing that this year.  I’m disturbed by the presence of Jenny McCarthy’s book on the front page of the Autism Research Institute, as well as the slogan, “Defeat autism now!”  These are separate and complicated rants, so I’ll try to parse this as best I can.

Jenny McCarthy is, I’m sure, a caring parent, but she is not a doctor.  I saw her site, the now defunct “IndigoMoms”, prior to the time when she claimed to have “cured” her son’s autism, and it was there that I saw autistic children referred to as “Crystal Children” and “Indigo Children”, higher evolved beings with auras of indigo or crystal.  I shit you not.  At the time, I found this view beyond naive, even potentially dangerous.  If a child is too highly evolved to function with the rest of us non evolved beings, I don’t see a lot of motivation for parents to accept the interventions that make such a difference in an autistic child’s life.

Now, Jenny claims to have “cured” her son Evan.  Once autistic, she says, Evan is now autism free!  And your child can be, too!

Oooookaaaaay, then.  There are so many issues here that it’s hard to know where to start.  But, picking at random, let’s start with the fact that Jenny, on her new, less flaky website, is still promoting the idea that vaccines cause autism.  There is no reputable study that indicates that this is the case, but still, vast amounts of autism research money are still being spent on yet more studies to prove that the unreliable studies are false.  This after the doctor who sparked the scare was found to have lied and fixed the results of his study linking vaccines to autism.  Dr. Wakefield still has his supporters online, supporters who are curiously open to the possibility of a conflict of interest in the case of other studies, but not to their idol’s own conflicts of interest.  Dr. Wakefield chose the twelve research subjects for his study.  Of those, at least four, probably five children were selected from among a group of parents suing the companies that provide vaccinations.  Dr. Wakefield himself was paid up to £55,000 to find evidence of a scientific link between autism and vaccines for use in the lawsuit.

So there’s that.  I have a real problem with wasting money on research where there isn’t a strong indication that it will do any good.  There hasn’t been a single study disproving the autism/vaccine link that hasn’t received a chilly reception by those who wish to believe the opposite.  And believe me, I understand the incentive.  It would be so, so lovely to have an easy source for the rise in autism diagnoses.  We must remember, however, that correlation is not causation.  Yes, autism rates have risen around the same time more children began getting the combined MMR vaccine, but without evidence linking those two, the two rising charts do not indicate a solution to a knotty problem.

At the moment, the research is pointing in a different direction – a combination of environmental and genetic factors.  I personally, from my non-scientific stance, think it’s entirely possible that for some small percentage of children with a genetic predisposition to autism, vaccines could be a trigger.  But we don’t know, and when the research indicates pretty conclusively that for most children with autism, the MMR was not the cause, I think it’s foolish to keep harping on the matter.  Autism research has long been driven by parent concerns, and this is good and bad.  Without the influence of parents, we might still be living in the bad old days of refrigerator mothers, an idea that still has some ground in parts of Europe. Parents pushed for more and better research, and today in the United States, the idea that autism is caused by frigid mothers is luckily a thing of the past.  At the same time, parents are, for the most part, not scientists, and we don’t always understand the scientific method.  The plural of anecdote is not data, but for most of us, anecdote rings truer than any study.  We believe what we want to believe.  I’m not immune to this, though I’m trying to approach the mass of information before me, as a parent of an autistic child, with as little bias as I can, and with as much concentration on the method as possible.

Jenny McCarthy finds it comforting to believe that her son is no longer autistic, and were she a private citizen, this would be a harmless belief.  But she’s not a private citizen.  Jenny McCarthy, actress, former Playboy model, is driving research in autism.  Jenny McCarthy is writing books about how to cure autism.  Jenny McCarthy is being given an enormous public forum for her ill informed ideas.  The tyranny of equal time in American media means that her claims are taken as seriously as the claims of actual doctors doing actual research. This is comparable to times when we’re shown one of the few scientists who doesn’t believe in global warming debating one of the 90 plus percent who does.  It is not fair, and it is not an accurate portrayal.  Most doctors studying autism do not think there is a link between autism and vaccines, and they do not think that autism can be cured.

This is a good time to discuss the second part of my rant: curing, defeating, or fighting autism.  Personally, I’m not for any of those things.  Don’t get me wrong, I want lots more research and I want lots more interventions and help for the children (and adults – they do exist, even if they’re hardly ever mentioned) who have autism.  But the militant language that often comes with autism research from organizations fronted by parents really disturbs me.  My son has autism, and I have no desire to erradicate it.  His autism is a part of who he is.  His dear, loving little quirks are part and parcel of the whole package.  Take away his autism, and you’re taking away a part of who he is.  What I want is to teach him how to live with his differences, not make him exactly like a neurotypical child.  There’s a lot he has to learn to fit into a society in which the balance of people are neurologically different from him, but you know, it’s not just those with autism who need to learn.  We who call ourselves normal need to make an effort as well.

The problem with the language of cures and fights is that it starts with the premise that autism is something wrong with people.  At this point, people with autism will live out their lives as autistic people, and many autistic people do so with great success.  There are quite a few blogs by autistic adults on the internet, and if you read them you’ll notice that what most of these people want is not to be unburdened of their autism, but to be treated as capable human beings with autism.  In my personal scope, I think that autism is less “something wrong” than it is something that requires a different approach.  My son is not medicated.  All of his therapies involve learning to parent and teach him differently, to maximize his success and help his differently wired neurosystem succeed.  I would love it if life was a little easier for him, but I would not love it if we lost the gifts that come with his autism.

This year, if you want to do something for Autism Awareness Month, my suggestion is just to learn a little bit more about autism from several different viewpoints.  You’ve just gotten some of mine, but my view is pretty limited in scope.  Check out some of the blogs out there by parents of autistic children, by autistic adults.  Read an article about autism.  Learn a little bit more.  Our children can only benefit when people are better informed.

9 Responses to “Autism Awareness Month rant”

  1. mick Says:

    I’ve been reading your blog for a while now, but wanted to de-lurk to say that this was such a powerful post. Your comments about the language of “fighting” are, particularly, really poignant for me. Thanks for such a thoughtful, thought-provoking post on an important issue that touches so many.

  2. heidi Says:

    I think that this obsession we have with normal in this society is rather unhealthy. I believe that people with autism have their place in it too!

    One of my first jobs ages ago was as a personal assistant in school to a kid with autism. I knew nothing of autism, but for unknown reasons we got along great. I really loved that kid, and I agree totally with you that autism was a part of his personality. Without it, he would have been someone else.

    I hope is that we in the end will allow differences in people without trying to force them to be what they are not.

    I really think that you are a good parent, accepting your son as he is, and doing your best to raise him to the best he can be! And although it may not be easy to write about it, it’s the only way to make people like me aware of these issues.

  3. the Lady Says:

    What a weird website. But seeing that Jim Carrey is allied with it, totally makes me snort. He’s into weird shit. Um, sad. Honestly, the gall of some people – I’m sure that money is driving McCarthy’s site. I didn’t look through it a ton, but that’s usually why people get involved. Any sane person knows that scientists don’t yet know what causes autism, just like we don’t know why one person gets cancer and one doesn’t. Maybe McCarthy got her son a lobotomy, and that’s why he’s “not autistic” any more? Now he’ll just obey her mindlessly and smile a lot?

  4. the Lady Says:

    Awww, yeeeah – look at all that crap she sells on her “lets go shopping” page. A signed book for 99 dollars?! And look at her eyes and face – she can’t STAND that she gave birth to anything other than, as you say, a non-neurotypical child.

  5. Kate Says:

    There’s a really lovely book by Elizabeth Moon called _The Speed of Dark_ that’s written entirely from the perspective of an adult autistic man being offered a “cure.”

    If you like science fiction at all, you might want to hunt it down — I thought it was really well done. (Her son’s autistic.)

  6. Marcy Says:

    I still think of Jenny McCarthy as always sticking her tongue out on MTV’s Remote Control game show. I can’t think of her seriously. She annoyed me then, she annoys me now. It’s just made worse that she has to deal with the same stuff other parents of autistic children face. Her tongue is still sticking out.

    I want to say one thing about medication though. We recently started medicating my 8 year old when he started threatening suicide. All the therapies in the world were not helping him. The medication takes him down a notch. All of a sudden the world is not so loud and not so bright and he is functioning in a way I couldn’t have imagined a year ago. It is not for every kid, but there are some kids for whom medication works very well. It’s not a cure, and we are not looking for a “cure”, but it helps him be a happier boy.

  7. Elizabeth Says:

    I really do agree with you on Jenny McCarthy. If her son is “cured” why is she still talking? Why isn’t her story in the New England Journal of Medicine? But she really burns my goat every time she opens her mouth because she does nothing but contribute to the snake oil medicine business that thrives around parents with autistic children. My MIL sends me emails constantly about “cures.” If there was a cure, it would be front page news, not passed around on the internet like the email from the man in Nigeria with the 1.5 million in a safety deposit box.

    However, on that front, I recently went to a lecture by the head researcher and one of the country’s leading doctors on autism/research at the University of Washington, and he touched on the 100s and 100s of studies going on. The most interesting one was one that showed the spike in the incidence rate coincided with the addition of cable TV and VCRs into households in the 80s. They have no idea why those two happened at the same time, but it would be ironic if Jenny’s soapbox was the cause and we could get rid of Jenny’s soapbox that way. 🙂

    Another study that I found fascinating was one that is looking at receptors in the brain that trigger development. They work like off and on switches at certain points in a baby and child’s development. And one of those “switches” is the social and speech and it is supposed to go off around the time the vaccines are usually given. The doctor’s point was that it isn’t the vaccine, but rather bad timing, the coincidence that the shot comes around the same time the switch in the brain should flip. But the point is, the switch doesn’t flip–even in children who don’t receive timely vaccinations–the study was doing of European children, US children and Tanzanian children–all of whom have the same incidence rate.

    And lastly, there is a group of researchers I read about recently who have identified receptors in the brain that are miswired in autistic children, but their research leads them to believe there are medical therapies that could realign these receptors. They haven’t gotten there yet, but they are excited about the possibilities.

    I dearly love my son’s quirks, but if he could enter the world and live an independent life (which he most likely won’t be able to do) I would welcome a “cure.” But that doesn’t mean I am going to take medical advice from the man in Nigeria or Jenny McCarthy.

  8. cherylc Says:

    What I always think about Jenny McCarthy is what huge pressure she is putting on her son. Maybe’s he’s acting typical now, but what if he shows more quirky or autistic behaviors later? What will that do to her world view and her relationship with her son? I would hate to be that kid, and have all that pressure to be “normal,” as if there isn’t enough pressure on autistic kids to be typical, anyway.

  9. Ona Thonen Says:

    There isnt much we can do about autism these days. There are still no permament cure to autism but medical science still improves. ;`;”,

    Brand new piece of content on our very own web blog

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