A view from the middle

I had lunch with an old friend recently, and the topic of conversation wound its way to autism. I, of course, am the parent of an autistic son. As it turns out, his nephew is also autistic. He wanted to understand autism, and I wanted to help him understand. But I didn’t know where to start.

Sure, there are many angles from which to approach the question. I could start with: Vaccines cause autism, once they have it, it’s a long struggle to recover them. Or how about: Nothing “causes” autism, it is just another aspect of this neurodiverse world we live in.

As far as treatment: Chelation, to get rid of the mercury and other metals. Or: A special diet that is almost impossible, and incredibly expensive, to adhere to. Or: ABA. Or: (add your favorite treatment here).

To tell the truth, I don’t know what to believe about autism. And it is not for a lack of trying. This post, according to my WordPress stats, is my 201st posting to 29 Marbles. I have covered a lot of autistic ground in the last 3 years. Over the course of those 3 years, and 200 posts, and numerous comments to other blogs by parents, autistics, and others with an interest in autism, I’ve considered a lot of different ideas and seen my beliefs and thoughts about autism oscillate a bit as I considered new things. I always seem to come back to the middle though, where I don’t really know what to think.

Over this time, I’ve also had the opportunity to observe how the views of others have evolved. In most cases, it seems, the longer someone has been blogging and thinking about autism the more their beliefs, and their blogging, have gone toward the extremes of the debate. Just check out Age of Autism (for the extreme view of the bio-med position) or Neurodiversity.com (for the extreme view of neurodiversity).

The thing is, I don’t really believe any of those things. Or, maybe it would be more accurate to say I believe in all of those things. Autism is, after all, a spectrum of disorders, so it only makes sense that the causes and cures (assuming either exist) would constitute a spectrum as well.

For someone to say that all autism is nothing more than mercury poisoning is irresponsible, though I don’t doubt that at least one case of autism could be traced directly to mercury. To say that all autistics live miserable lives and will never be happy or able to live and function on their own is simply untrue, though it goes without saying that there are some autistics whose life will be exactly like that.

On the other hand, to say that all autism is solely the result of genetic factors – with no influence from environmental triggers – is irresponsible, though I sincerely believe that some cases of what we call autism are indeed purely genetic manifestations. To say that all autistics have the potential to live happy lives and live and function on their own is as untrue as the opposite example above, though obviously some autistics will find happiness and success on their own.

Some will say I’m just wishy-washy, a waffler, a flip-flopper. I prefer to think that I’m simply staying open minded, because when you get right down to it not all the evidence is in. Not even enough evidence is in to say anything specific about autism in general.

And that, I think, is my point on this, World Autism Awareness Day. If you are new to autism, because you have a newly diagnosed child or you are just curious, enjoy the view from the middle for a while. Listen to what the extremists and fundamentalists have to say and think about it for yourself. Pay attention to your own instincts. Get to know your child – as he or she is, not how you wish they were – and figure out what YOU think is best. Not just for the child, but for you. For your spouse. For your other children.

There is no simple answer, no matter what you hear, and there is no simple path to follow as you make your way through the world of autism.

0 thoughts on “A view from the middle

  1. There is nothing extreme about neurodiversity.com. The website offers links to many different websites with many different views.
    Age of Autism is extremist and tin-foil hat conspiracist antivax garbage. You have no right to place a balanced well researched website like neurodiversity as the AoA clown blog’s opposite number.

    I’m sorry you can’t see the flaws in the vaccines cause autism fairytale. It’s too bad you’ve given those people acreage in your head. In my opinion, you and your blog do harm to autistic people AND public health by giving the idea some kind of credence.

    The “right” place in between one belief and another is not always absolutely in the middle. We don’t need to take a, “I don’t know, maybe it’s good sometimes” stance on things like murder or child molestation. Neither do we need to concede ground to the litigious and guilt ridden parents, their lawyers and/or the snake oil peddlers. When there NEVER was a reason to suspect vaccines. Go back to Wakefield, go on to the chelation quacks and you can see that the antivaxers and quacks and their victims have kept this stupidity alive.

    Again, you help keep this stupidity alive by giving it some credence.

  2. You have said here that some may call you a waffler or middle-of the-road type or other names but I really think your points here make excellent sense. Read, learn, study, make a determination based too on each individual child and only after surveying all sides. Ok, maybe that is pretty middle-of-the-roadish, but what’s wrong with that, anyway? Common sense -let that prevail I think works well for me anyway. Very good and thoughtful as well as insightful post.

  3. Brett, you really need to read Amanda’s essay “Neurodiversity is not the opposite of biomed.”

    http://ballastexistenz.autistics.org/?p=32

    Neurodiversity isn’t about opposing alternative medicine, or debunking anti-vaccine fallacies, or anything like that. Several people who hold pro-neurodiversity views are also concerned about scientific accuracy and public health, but these are separate issues. Neurodiversity is a philosophy of valuing the diversity of human thought in much the same way that we value diversity of race, religion, and all the other differences that are part of the tapestry of humanity.

    And I agree with Camille that you owe Kathleen Seidel an apology for unfairly painting her as an extremist. Neurodiversity.com is among the most well-researched and meticulously documented websites I have ever seen, and it contains literally thousands of links to other sites that express a wide variety of views.

  4. Ms. Clark,

    Thanks for the comments, and for the opportunity to expand a little bit on what I was trying to say. As sometimes (too often) happens, what I wrote has some ambiguity that needs to be cleared up.

    I am using the term “extreme” and “extremists” here not in a pejorative sense, but rather in the statistical sense. (These were obviously not the best choices of words, given their now-common usage in a pejorative sense.) Though I don’t have any data to back it up, I believe that the debate about autism does have as its extremes the beliefs of the bio-med community and the beliefs of the neurodiversity community.

    The target audience for this particular post (as for many of my posts) are those people new to the world of autism. All too often these folks jump right in on one side or another without understanding the whole, big picture. I was simply trying to let them know that there is a lot to see, and being in the middle – with no set ideas – is the best vantage point from which to see the most.

    Your point is well taken about the comparison of Kathleen Seidel’s neurodiversity.com to the Age of Autism blog. It was not my intent to compare these two sites, because as you remind us there really is no comparison. Ms. Seidel obviously takes great care to present her information and resources in a well thought out manner, the Age of Autism blog seems, at most times, to be a stream-of-consciousness rant at the world.

    While I can not apologize for my beliefs that the two viewpoints represent different extremes (in the statistical sense) of the autism debate, I do sincerely apologize to Ms. Seidel for giving even the impression that I was comparing her work to that of the folks at AoA.

  5. abfh,

    Thanks for referring me back to Amanda’s post. I remember reading it a couple of years ago, when it was first published, but it was good to read it again. I don’t disagree with anything she says, or the fact that neurodiversity isn’t about challenging bio-med.

    In fact, I think that the bio-med and neurodiversity communities have a lot in common in terms of how they go about – or at least how they say they go about – supporting their underlying philosophies. Both claim to be evidence based, adhere to scientific principles, etc. It is those underlying philosophies that I believe lie at the opposite extremes.

    In your words, neurodiversity is “a philosophy of valuing the diversity of human thought in much the same way that we value diversity of race, religion, and all the other differences that are part of the tapestry of humanity.” On the other hand, the underlying philosophy of the bio-med community seems to be “there is no place for autism, or autistics, and the way their minds work in the world and we need to get rid of it so we can have our kids back.” (I’d give you an exact description of their philosophy, but I couldn’t find one. The above is based on my perception of their mission from reading various books, blogs, etc by those in the extreme of the bio-med community.)

    If those don’t represent opposing extremes, I don’t know what does.

  6. If those don’t represent opposing extremes, I don’t know what does.

    Well, some people love their autistic kids and the way their minds work, while also believing that some sort of biomed approach will improve their physical health. The two views aren’t necessarily incompatible (although you are correct that they’re often described as if they are).

    I would say that the worst extremists are the Autism Speaks crowd, with their goal of making autism a word for the history books by means of eugenics.

  7. abfh,

    As one of those people, I have to agree with you. But my application of bio-med treatments for my autistic son is for the same reason I use bio-med for my non-autistic son, like you said to improve (or maintain) their physical health.

    The difference I see is that those in the “bio-med community” apply bio-med not for these physical reasons but to fundamentally change the way their kids’ brains work. Again, it is not what they do but why they do it.

    As for the question of Autism Speaks and eugenics, I’m very interested to hear your thoughts on the questions I ask in my next post.

  8. I agree with all the other posters that neurodiversity and biomed do not represent opposite extremes of anything. I know too many people into both, or into neither. And I’ve also been around too long.

    Biomed is just the latest fad. There have been fads before it. I can remember when ABA was considered “the opposite of neurodiversity”, which is false for the same reasons that positioning biomed in that spot is false.

    If neurodiversity is one philosophical extreme, then any philosophy that puts people on a hierarchy by neurology is the other.

    That would put, for instance, autistic supremacists, at the other extreme, right along with those who think that autism ought to be eradicated because it’s inferior to a lack of autism.

    Which I think is pretty accurate. The specific methods that people who believe in neurodiversity (to whatever extent) practice, which may be shared in common with those who do not (to whatever extent), are not the issue, and shouldn’t be made into the issue.
    That’s a separate issue entirely, and disagreement about that exists within people who believe in neurodiversity and also within people who don’t. (This includes the fact that my views on what assistance an autistic person should and should not get might be identical to the views of some random autistic supremacist, even if our actual worldviews about power and who should have it and equality and so forth were polar opposites.)

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