Monthly Archives: April 2008

The genetic basis of … everything (or, Maybe we’re all autistic)

Maybe it’s because I’ve been around autism for so long now, but I can’t understand why anyone would find it so surprising that a possible “cause” of autism is a complex interaction of genes. Several recent stories (such as those documented by Kristina Chew and Mike Stanton) have made this point as if it is some new discovery. Granted, it may have only recently been scientifically validated, but this one seems to me to be common sense.

You might as well ask questions like, “What is the cause of introversion? Extroversion? Natural athletic ability?”

I can hear many people saying something along the lines of, “But those ‘conditions’ are normal.” Are they? I mean, in a statistical sense, are they really ‘normal’? I would say no.

If you look at the introvert/extrovert question, I would guess (yes, I’m guessing, no science here) the bell curve of this spectrum would have a few at either end and the rest (you guessed it) within two standard deviations of the mean. Same for athletic abilities.

If we look at autism in this way, as a spectrum across all people (and not just those we currently refer to as autistic), I propose that we might see something similar. On the left side of the bell curve, you would have those that are very non-autistic, the incredibly sociable communicative, etc etc. On the right side, you would have those that are very autistic (what we now simply call autistic). And in the middle, within two standard deviations, would be the vast majority of us showing our mix of autistic and non-autistic traits.

They shoot horses, don’t they?

The anecdote The Family Doctor , published by Julie Obradovic on Age of Autism a couple of months back, is a well told story of how she finally succeeds in converting her brother, a pediatrician, to her understanding that vaccines are bad and likely a cause for autism. If you are new to the question of autism and its causes, and come across this story early on in your search for answers, chances are it might be pretty influential.

But something has been bugging me about the story since I first read it. I couldn’t quite put my finger on it, so I haven’t written about it until now. It was a discussion I had with Autistic Bitch From Hell in the comments to my recent post A View From the Middle that made me realize what was so troubling to me about the story.

Here are Obradovic’s brother’s thoughts on autism and an autistic child:

“I tell you, I would rather she got Polio than Autism. At least her mind would be in tact. At least she could talk to me, experience life with me. No offense, but some of the stories you send me about these kids? Well, if they were horses, they’d be put down just to ease their misery. What parent can watch that, or live with that? What child deserves that?”

In other words, an autistic life is not worth living. And an autistic child is not worth parenting. With this mind-set, it is no wonder that they want to find a way to eradicate autism.

I just hope those of you trying to learn more about autism take this attitude into account when you read stories and opinions about vaccines as the cause of autism.

John Elder Robison on an autism cure

This is kind of a follow-up to my most recent post. In responding to Some Asperger questions from the audience, John Elder Robinson Robison – author of the book Look Me in the Eye and a blog of the same name – takes on the cure question:

If there were ever a cure would you take it, or would you think it was like taking a piece away?At age 50, I am comfortable the way I am and I would not want to take any pieces away. As a teenager, though, life was a lot harder and I’d have had a different answer if you asked me this at age 15. I guess we become more comfortable with ourselves as we get older and hopefully wiser.

If you’ve read the book, you know that Robinson’s Robison’s life was anything but easy. Interesting, no doubt. But not easy, especially in a time when pretty much all kids – autistic or not – were left to sink or swim in the world.

(A side thought for a later post: Could the increased amount of time parents today spend with their kids, compared with previous generations, be a contributing factor to the increase in autism diagnoses?)

Whose decision is it?

A couple of weeks ago, I was asked to give a short talk on autism. Here’s a rough transcript of what I said.

A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right? (general murmur of agreement from the small audience)

I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by I learned.

If the child study team that gave us the diagnosis had asked that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”)

But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make. At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?

Ask me now, when my son is nearly 17, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”

This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.

It is the same for out autistic kids, even if the path is a bit longer or rockier.

If you are an autism parent, what are your thoughts on this? If your autistic adult (or nearly adult) son or daughter were offered and accepted a cure, how would you feel? How would you feel if they were offered a cure and declined?

(If this topic sounds familiar, it is because this question – and some of my thoughts on the question – were the subject of one of the earliest posts on this blog.)

How much risk is too much?

In a comment to Lisa Jo Rudy’s brief examination of some of the issues in the autism-vaccine debate, Dadvocate had this to say:

Rather, it is that some, in their zeal to promote public health may be erroneously accepting a level of adverse reaction risk that is too high (and possibly avoidable by reverting to a more conservative schedule)….

The obvious (to me) question from this is, “Given that the current vaccine schedule results in an unacceptably high risk of autism in vaccinated children, what level of risk is acceptable? If the current risk is 1-in-150 (which, I should note is actually the prevalence and not the odds of being autistic), what risk is acceptable? 1-in-500? 1-in-1000? 1-in 10,000? None?”

This question is really for those who believe that vaccines are to blame for autism, and is but one strand in a much more complex thread. Among other things, the risk of individuals becoming autistic would need to be weighed against the risk to the public at large of reducing vaccinations.

At the risk of retreading old ground, exactly where do you think the balancing point would be between protection of individuals from autism and protection of society from communicable diseases? (If you don’t think this is a valid question, by all means let me know. I’m interested in that possibility as well.)

What is autism?

I’ve been thinking about this question in the wake of the Polling case at the Vaccine Court, especially with all the discussion around the term “autism-like symptoms”. In his post Reports of the debate’s death were greatly exaggerated, Wade Rankin echoes my initial thought that autism is, by its very definition, nothing more than a collection of “autism-like symptoms.” But is that really true?

And if it is, is there really something – one thing – that is “autism”? Or are there a lot of “autisms”?

As I hinted at a couple of days ago, I lean toward the latter. And I can’t help thinking that each of these autisms needs to be considered independently of the others. What may help in one group of cases – say ABA – may be catastrophic in other groups. A change in diet for one group may actually work, even if it can’t be repeated in another group. (I’m not even going to touch chelation, because I don’t believe that has any merit at all as a treatment for autism, along with any number of other snake oils.)

A much better discussion of this idea, especially what it means in terms of how autism(s) is (are) treated, can be found in Harold Doherty’s post Alex Plank with Aspergers Does Not Want To Be Cured But He Does Not Speak for My Son with Autistic Disorder. It reminds us that just as we want the world to remember that all autistic people are not the same, we need to remember that the needs and wants of all autistic people are not the same.

No single individual speaks for, or should pretend to speak for, all autistics.

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 (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.

The importance of rehearsal

I learned the importance of rehearsal while in the military: Plan an operation, try it out, refine the plan. Last night I mentioned to some friends how I use rehearsal in my day-to-day life: Preparing for a presentation, walking through the steps of a plan, practicing a process. Especially when it is something important.

In Not my fault Guv…, Dave Snowden highlights the value of rehearsal on a larger scale:

I find it difficult to believe (well maybe I don’t) that after producing a major engineering project on time and budget, a combination of BA and BAA could combine to mess up the opening day of Terminal 5 at Heathrow. Delays at the staff carpark are in part to blame! People failed to unload bags fast enough, the queues were too long. Hi guys, ever heard of rehearsal? Simulation software?

Of course, the really sad part is how poorly BA and BAA responded when everything went to hell. Which, of course, Dave discusses as well. Check it out.