Comparative studies in “autism”

I have an irritating (according to some) tendency to play “devil’s advocate” in discussions about many things. I think this dates back to my junior year in high school when I learned the pleasures of debate in a philosophy class (gotta love the Jesuits!). More than anything, it was the admonition that some things were beyond debate – for example, abortion (remember: Jesuits) – that got me hooked. Nothing, as far as I’m concerned, is beyond discussion or debate.

Which has led me into a life of “comparison.” Comparative religion. Comparative politics. (It was, in fact, in a comparative politics class that I met my wife of 21 years.) My reading list over the years reflects this believe, as I make it a point to read books that discuss different aspects of a question or dilemma. Atheism / Religion. War / Peace. Republican / Democrat. Gun Control / NRA (and, of course, Ted Nugent ;-). Democracy / Communism / Fascism / …ism.

As I have become more and more of a comparative person I’ve also realized that I don’t have much tolerance for fundamentalism, which makes sense since fundamentalism is – by definition – “strict adherence to [a] set of basic ideas or principles”. For one thing, you can’t have a meaningful discussion with fundamentalists: they know what they know and believe what they believe and don’t really listen to what you are saying except to figure out which pre-fabbed counterargument they will use (sometimes they don’t even try that hard). The worst thing, though, is that there is no opportunity for true learning or growth for either me or the fundamentalist.

It seems inevitable, then, that I find myself thinking about autism in comparative terms and being frustrated at the level of fundamentalism that permeates all sides of the discussions and debates surrounding autism. The proverbial straw* that has brought this far enough to the front of my brain to write about was the recent departure of Michael Boll and his Autism Podcast from the Autism Hub.

To be fair, I haven’t listened to the Autism Podcast in quite some time. (Truth be told, I don’t listen to any podcasts – embarrassing, I know.) But in the wake of the dust-up surrounding Michael’s interview with Rick Rollens, I figured I should take a look through his archives to get an idea of what he has produced over the years.

What I found was an impressive collection of podcasts and interviews with people from many different backgrounds, perspectives, and thoughts on autism. Michael seems to be someone who is interested in learning all he can so that he can better understand the issues, and sharing the source of his learning so that others can do the same. My kind of guy.

But that most recent interview (which, again, I have not listened to) really got the ire up on the Hub. You can see the basics of that ire in the comments to the interview, but it went much deeper than that. As a member of the Hub, I kept up with the discussion about the interview on the Hub’s mailing list.

Though there are a lot of nuances to all the discussion, what it basically came down to was, “How dare he interview someone who is so against everything we stand for, not call him to task for it, and then have the audacity to actually publish it on the Hub? Never mind all the good things (ie, things we agree with) he has posted over the years, he spoke with someone who doesn’t share our beliefs, and shared those beliefs with the world, so he must not share them either.” Fundamentalism at its ugliest.

When I moved this site to this self-hosted location earlier this year, I also redesigned it so that it showed a wide variety of feeds and links. Yes, the sidebar includes a feed from Age of Autism (another group that is sinking quickly into fundamentalism) in addition to the link to the Hub, as well as links to neurodiversity AND bio-med autism parents.

At the time, I actually considered resigning from the Hub. Not because I don’t believe in the stated purpose of the Hub, because I do. But I knew then that I had some things I wanted to write about that would raise the hackles of some of the more “hard-core” members of the hub. Because as much as I agree with what the Hub is trying to do, I don’t always agree with how it is done. (There are, in fact, several Hub blogs I don’t read because of their incredible viciousness toward those who don’t agree with them.)

There are many topics in autism making headlines these days that generate seemingly endless, and amazingly opposite, reactions from people (Peet vs. McCarthy, anyone?). It is not my intent to turn 29 Marbles into a “comparative autism” blog, but I have the feeling I’ll be writing more along those lines in the future. I’m looking forward to some good conversations.

* Obviously not enough to make me write about this before, there has been at least one (anonymous) call for me to be removed from the Hub because of my “deference to … a loon.” To be honest, I’m surprised there haven’t been more. I’m sure there will be more in the future. And if it is the will of the Hub to remove me, I’ll respect that decision. But given a choice, I choose to stay.

What if they had been diagnosed autistic?

In his book Unstrange Minds: Remapping the World of Autism, author Roy Richard Grinker mentions chess legend Bobby Fischer (p. 63) as someone who may have been an undiagnosed autistic. I’ve just started reading David Edmonds’ book Bobby Fischer Goes to War: How A Lone American Star Defeated the Soviet Chess Machine (P.S.), and have to say that I was thinking the same thing. (For more discussion on the subject check out the Bobby Fischer talk page on Wikipedia.)

Which got me thinking: If Fischer were indeed autistic, how would his life – and the history of chess, among other things – have been different if he had been diagnosed when he was young? If he had been provided the treatment and services that are typically demanded today for Asperger’s diagnoses, would he have had the impact he did? Would he have been able to have that impact, or would that ability have been “treated” out of him?

You can extend this to any of the great minds that people sometimes say were probably autistic, like Newton, Einstein, Van Gogh. You could also look at those who have been diagnosed with Asperger’s as an adult and think back on how things may have been different, for them and their contributions, if they had been diagnosed younger.

There is no doubt (in my mind, anyway) that the increase in diagnoses of autism, especially Asperger’s, is due to a better understanding of what Asperger’s is and an increased desire of parents to understand why their kids are “different”. Many are being diagnosed now that might not have been diagnosed before, and demanding (and receiving) treatment they may not have received before.

I can’t help wondering what these individuals – and the world – may be missing out on because we want to catch and “fix” their differences early in life. We want to make life “easier” for these kids and their parents in the short term, but what is the impact to the long term? (This is kind of a different take on my earlier question, “What would a world without autism look like?“)

(Just to be clear, I’m not advocating not diagnosing children – or adults – if a diagnosis is warranted. I’m just asking the question because I think the answers, even if only hypothetical, can give us some insight into why we think the way we do about autism and why we do the things we do about autism.)

UPDATE: As I finished writing this, I saw Your Advice Requested: Next Steps for a Teen Diagnosed with Asperger Syndrome? over at About.com. The questions I’ve asked in this post were a hypothetical to get you thinking about what impact a diagnosis and subsequent treatment would have had on an undiagnosed autistic. If you’ve had a chance to consider those questions, your thoughts on them should help you come up with an answer to Lisa’s question.

Maybe we’re all autistic (redux)

While writing my most recent post, I found myself back 2 1/2 years to something I wrote on the subject of the genetic nature of autism. The following quote from the article I was discussing is quite likely the source of my opinion, expressed in The genetic basis of … everything (Or: Maybe we are all autistic), that the “autism spectrum” isn’t restricted to those with an autism diagnosis (emphasis is mine):

Autism is not a “you have it or you don’t” disorder, Todd said. Instead, it is a highly inheritable continuum of traits, much like height or high blood pressure. The cutoff for being tall or short or having high or low blood pressure is somewhat arbitrary, he said. So is the diagnosis of autism. The measure of autism is usually the inability to cope in the real world, said NYU’s Hollander.

People can be different without having a pathology,” Hollander said. “It’s only a disorder if it causes stress or interferes with function.”

Reminiscent of a comment from Laurentius Rex on a recent post.

Something to consider.

Genetic engineering and autism

As far as I know, all of the arguments about the increase in autism diagnoses being too rapid to be purely genetic are based on an assumption of randomness in the process. From that perspective I must admit that it seems unlikely that you could explain the increase in autism diagnoses purely to genetics.

But is this really a random process?

This thought occurred to me yesterday when I heard a teaser for yesterday‘s Talk of the Nation on NPR, on which they had a segment titled Genetically Engineering a ‘Perfect’ Baby. In the teaser, they played a quote from one of the guests in which he said something along the lines of:

We’ve been engaged in genetic engineering for hundreds, if not thousands, of years. It happens every night in bars and clubs and every where around the world, when men and women ‘select’ the mate they want to help parent their child.

Which got me thinking: What if we (humans) have been engaged in a process of informal genetic engineering – maybe more appropriately referred to as selective breeding – over the past hundred years that has contributed to the increase in autism during that time, especially of the “high-functioning”, Asperger’s type of autism? I can hear many of you, even as I type this: What the hell are you talking about? And you can bet I’ve got my fire-suit on for all the flames that are sure to come my way. But I’m serious.

Consider this: Over the past 100 years or more, the engineers, scientists, mathematicians and other technically oriented people have become more important to the success and progress of our society. As these people’s importance has grown, so has their power and their desirability as a mate. As a result, these “geeks” have more opportunities to reproduce and further the survival of geek genes. When two geeks get together, especially if they are geeky in different ways, that is even more geekiness that passes down to their children.

Or, as a good friend once put it, “Geeks are breeding more now than they used to.” I apologize for the bluntness of the statement, or if it offends, but this is how she said it. (I’ve actually used that quote before, in an August 2005 post discussing the article Scientists begin to trace autism’s genetic roots in my hometown newspaper the St. Louis Post Dispatch.)

Does anyone know of any studies that address the non-randomness of mate selection and potential impact on genetic diversity, especially as it may relate to autism? I did a quick Google search, but didn’t really come up with much.

(Back on the subject of the Talk of the Nation segment, make sure you check it out. You can also join the conversation on the subject on their blog. Some very interesting comments so far.)

A world without autism

On one side of the autism debate are those whose mission it is to eradicate autism, remove it from the face of the earth. Which got me thinking, and brought the following questions to mind that I would like to ask those who would see autism disappear:

If autism could be cured, and if we, as a society, chose to cure it, what would the world be like? How would it impact our lives, and the lives of our children (and descendants many generations down the line)?  What would society look like 50 years from now?  100 years from now, when autism (or autism-like traits) had stopped influencing things?

If you can, I’d also like to know what you think would actually be removed from individuals and society by curing autism, in terms of behaviors, (dis-)abilities, etc.  In other words, what do you consider part of autism, and what do you consider just different enough to be not autistic?

Obviously, I’m also interested to hear what those who don’t share this goal think would happen if autism were to be completely removed from the human condition. Is this something that we would, or should, want? Or would this be a case of, “be careful what you ask for, you just might get it”?

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.

Indulge your kid’s passion, and build on their strengths

Consider this opening paragraph from the book Strengths Finder 2.0:

At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don’t have natural talent with numbers, you’re still forced to spend time in that area to attain a degree. If you’re not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.

Any autism parent – any parent, for that matter – will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not. But that doesn’t mean that is what we should be doing.

The following originally appeared here in February 2006.

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Indulge your (kid’s) obsession

I spent Saturday afternoon this weekend at a Yugi-oh regional tournament with my younger (non-autistic) son, who is 13. Though he was not the youngest duelist there, he was one of a handful of kids under 15 in a group of 80+ duelists. (In case you’re not familiar with Yugi-oh, participants are duelists, not ‘players.’) The ages ranged all the way up to 40+, with the bulk of them in their late teens through early twenties. All duelists were male, save one.

I have the feeling that if you were to observe many of these guys in a ‘normal’ environment – say your local high school – your first impression would be “outcast,” “nerd,” or something similar. They have long unkempt hair and a preference for black t-shirts. They keep to themselves, or a small group of like-minded friends. They are not the ‘social butterflies’ that seem to be demanded in that environment. In a word, they would appear to be “non-social” (ok, maybe that’s two words *-).

Put almost a hundred of them in a room together at a tournament where everyone is trying to prove they are the best duelist in town, though, and what you get is a room full of ‘social butterflies.’ As duelists finish their match, they congratulate each other on a match well played. They walk through the room, soaking in what others are doing. In between rounds, they seek each other out, talking strategy, asking about the cards they have (Yugi-oh is what they call a Trading Card Game). It doesn’t matter if you are good are bad, new or experienced. The only thing that matters is that you are interested (I should say obsessed) with the game.

The thing is, many parents I know don’t understand – and thus discourage – their kid’s obsession with this and other similar games. These parents can’t grasp the hours and hours their kids spend learning each card’s abilities, their strengths and weaknesses, how they can be used together, and how they can be used in response to an opponents actions, or the many more hours (and $$$) spent acquiring and sorting through cards to build the perfect deck. And of course, the many many hours spent practicing by dueling with friends, or in solo practice.

Wait a second. Those things sound an awful lot like what most kids go through when they find their obsession. Take a sport like football. Kids spend hours learning playbooks. They spend hours after school every day of the week at practice, sometimes on the weekend. They gather for games in the hope of proving they are the best. It’s just that these ‘obsessions’ are ‘mainstream’, so their parents proudly refer to them as their children’s ‘passions’ or ‘talents.’

Luke Jackson said it best (I’ve quoted this before, but it seemed worth repeating):

Q: When is an obsession not an obsession?

A: When it is about football.How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys ‘eat, sleep and breathe’ football and people seem to think that if someone doesn’t, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn’t shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

Though I hate to engage in arm-chair neurology, I’d be willing to bet that if these duelists were ‘evaluated,’ quite a few of them would show up on the autism spectrum, likely as Aspies. That is, if they were evaluated in the general context that those types of evaluation are done – against the ‘norms’ of society today. Conduct their evaluation in the context of their world, the world in which they can indulge their passions, and I think they would show up as perfectly normal (whatever the hell that means).

In my thinking over the last week or so on what it means to be different, I seem to keep coming back to the same point over and over: it’s not our kids that have a problem; it’s the world they must live in that has the problem.
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Autism and the “complex social environment”

Mike Stanton’s post Of mice and men and autistic fruit flies includes the following criticism of an autism related study using fruit flies:

But autistic fruit flies? Autism is a complex social disorder. Fruit flies are not complex social beings.

My first thought was, if autism is a “complex social disorder” it is only because we live in a complex social environment. In the comments, Amanda disagrees with Mike that autism is a social disorder at all, and I think I agree with her.

True, autism is measured against the “norms” of the complex social environment in which we live, but the “condition” of autism exists independently of those norms. If those norms didn’t exist, or if our social environment was different, those who are autistic in our world would still be autistic in this alternate world.

Mike’s commentary also includes a passage with which I wholeheartedly agree:

They showed diminished social interaction but improved cognitive performance compared to neurotypical mice. This is automatically seen as a deficit. But surely progress is driven by those individuals who turn their back on the herd and consider the external world?

Kristina Chew also has some thoughts on the studies, and Mike’s post, in her post Can Animals Have Autism?

“In My Language”: The video that caught CNN’s eye

The spark that caught CNN’s eye about Amanda Baggs (see my last post if you don’t know what I’m talking about) was her video “In My Language” posted on YouTube. While it is easy enough to just go to YouTube to watch it, I would like to share it here as well.

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The wonderful adventure of life

In her post Everyday People, abfh has the following to say about her “abnormal” behavior as a child:

When I was a child, I often wandered away, climbed tall trees, played in traffic, and didn’t pay much attention to adults who told me that I was not behaving properly. That didn’t mean I had some sort of tragic and mysterious mental defect that made me incapable of social interaction, understanding danger, etc., and what’s more, I certainly wasn’t suffering or trying to escape from life. Quite the contrary—being alive seemed like a wonderful adventure, too precious and fascinating to be wasted sitting obediently in dull classrooms. I got kicked out of several primary schools for wandering away when the teacher wasn’t looking, but I never thought that made me abnormal, either; I just thought schools were inhabited by narrow-minded conformists. I wanted to explore the world, going on brave quests like the kids in my favorite adventure stories. No doubt my view of life was absurdly melodramatic, but I’ll tell you what: Those who would describe my existence as a devastating tragedy are being far more absurd.

I can’t help but think of the “unreasonable man” quote from Shaw that I wrote about a while back. It also brings to mind a commercial for I don’t know what product that shows kids “aspiring” to mediocrity (“I want to get stuck in middle management”). It makes we wonder about what we are teaching our children – autistic or not – about living this great adventure, both in our schools and as parents.

Everyone can be a ‘winner’ (following on a theme in comments to Mike Stanton on a previous post), but not everyone can be a ‘winner’ in the same thing. Everyone can experience the great adventure of life, but none of us have the same great adventure. The problem seems to be that we as a society are trending towards an homogeneous world in which we are all expected to ‘compete’ in the same things, that we are all expected to have the same Great Adventure.

Which is unfortunate, but is it inevitable?