29 Marbles

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.

While wandering the aisles in the local Borders book store, I saw Donna Nakazawa’s new book, The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance and the Cutting Edge Science that Promises Hope. This description is from the book’s official site:

Multiple sclerosis, lupus, Type 1 diabetes, rheumatoid arthritis, and nearly a hundred other chronic autoimmune illnesses are part of this devastating epidemic, in which the human body, acting on misread signals, literally begins to destroy itself. Alarmingly, the occurrence of many of these diseases has more than doubled in the last three decades, signaling a disturbing trend that can be directly tied to environmental factors in everyday modern life—including our daily exposure to a dizzying array of toxic chemicals.

With the conversation around a recent post fresh in my mind, I was drawn to the book to see what the author had to say about autism in the context of this autoimmune epidemic. There is one section, consisting of two pages, where she mentions the possible relationship of autoimmune issues, vaccines, and heavy metals (specifically mercury in the form of thimerosol) to autism. I don’t recall the specific wording, but she basically left it as, “We’ll have to wait and see what comes of the research.”

Has anyone had a chance to read this book yet? Any thoughts?

If you ask Dr. Bryan Jepson he will tell you why he thinks the “new” autism is different from the “old”. As a medical doctor (now a Director of Medical Services) and parent of a young autistic son, Jepson has been doing some research lately and has come up with some (not always so) new ideas. Here are some excerpts from a story in the Deseret News (Utah) about Jepson and his new book Changing the Course of Autism: A Scientific Approach for Parents and Physicians:

Soon he was convinced that autism is a complex metabolic disease that has as much to do with the gut as it does with the brain.

It’s an epidemic, he says, “and there’s no such thing as a genetic epidemic.”

At the same time, the “new autism” is less likely to show up within the first six months or year of a baby’s life, and is much more likely to be “regressive,” showing up at 18 months to 3 years to rob the child of previous skills — sometimes almost overnight, sometimes as a gradual decline.

There’s a genetic susceptibility for autism. But something else has to explain the sudden rise in numbers — and it’s not simply a matter of better diagnosis or a broader definition of what autism means, he says.

The answer appears to have something to do with the increased toxicity of the environment, he says, from food additives to vaccines and antibiotics. Children who are born with a genetic susceptibility for autism have trouble detoxifying, he says.

The increase in other chronic diseases such as asthma is evidence that autistic children may also be proof of what’s to come, he says. “It’s kind of like the canary in the coal mine.” (my emphasis)

I know a lot of parents have turned to diet as a treatment for autism, but I don’t know how many of them take it as far as Jepson does:

Calling autism a behavioral disorder, says Jepson, is like calling a tumor a headache. Instead, he says, autism is just one symptom of a disease process that affects the digestive, immune and neurological systems.

The majority of children with autism have gastrointestinal problems, sometimes causing severe pain. Their tantrums and head banging may be a manifestation of pain they can’t articulate, Jepson says. If the gut disease is treated — with diet, nutritional supplements and medication — that behavior goes away.

The benefits of changing diet and the question of whether stomach issues are a cause of autism or simply a co-morbidity have been discussed ad nauseum over the past several years in the blogosphere, as well as other books addressing. The reviewers on Amazon seem to love it (7 reviewers, average rating of 5 stars), but I wonder if they really found it that good or if it was just something that justified an opinion they already had.

I’d be interested to know (without having to read it, my list is already too long), if this book brings anything truly new to the debate. (Aside, of course, from the obvious belief that autism is a symptom of something else and not a condition of its own.)