What would it take? (Or, Why the debate will never end)

Before you read the rest of this post, please take a moment (or, if you read as slow as I do, several moments) to read these two posts, by different authors, discussing the study Continuing Increases in Autism Reported to California’s Developmental Services System: Mercury in Retrograde and the accompanying essay Thimerosal Disappears but Autism Remains published in this month's Archives of General Psychiatry:

• Thimerosal Exposure Declines, Autism Rates Increase (Autism Vox)
• Making Sense of the California Autism Numbers (Age of Autism)

So, what do you think? Does the study prove anything? Disprove anything? If you believed before reading these posts that autism is caused primarily by thimerosal (or mercury in general), did reading these posts change your mind, or cause you to doubt that position? Conversely, if you believed before reading these posts that thimerosal / mercury is not a cause of autism, did reading these posts cause you to change your mind, or to question your beliefs?

On the Autism Blog at About.com, Lisa Jo Rudy hits the nail right on the head with this pessimistic (but unfortunately accurate) observation:

Knowing the autism community as I do, I find it hard to believe that these findings will change much of anything. Those who believe firmly that vaccines are NOT to blame for the rise in autism diagnoses will stand on these findings as proof positive of their claims. Meanwhile, those who believe firmly in the toxic nature of vaccines will continue to advocate for an end to required vaccinations - and for compensation for vaccine damage to their children.

In his article on Age of Autism, Mark Blaxill effectively quotes Karl Popper as a guide in his examination and acceptance of criticism to his theory:

He who gives up his theory too easily in the face of apparent refutations will never discover the possibilities inherent in his theory. There is room in science for debate: for attack and therefore also for defense...But do not give up your theories too easily--not, at any rate before you have critically examined your criticism.

But this then begs the question, at what point do you give up your theories. In discussing his conversion from atheism to theism (I believe Christianity, though he never comes out and says it) in his book There is a God, Antony Flew writes:

Now it often seems to people who are not atheists as if there is no conceivable piece of evidence that wold be admitted by apparently scientific-minded dogmatic atheists to be a sufficient reason for conceding "There might be a God after all." I therefore put to my former fellow-atheists the simple central question: "What would have to occur or to have occurred to constitute for you a reason to at least consider the existence of a superior Mind?"

Obviously, this question can go both ways, and can be applied to just about any partisan disagreement, including the one at hand. With that in mind, I'll rephrase the questions I asked above:

• If you believe that thimerosal is not a primary cause of autism, what would it take to convince you that it actually is?
• If you believe that thimerosal is the primary cause of autism, what would it take to convince you that is not?

Note: please don't respond with something along the lines of "nothing could make me change my mind because it is obvious that my belief is correct." If that it how you feel, then you don't have anything worthwhile to contribute to this conversation and I'd prefer it if you didn't clog up the comments.

The ideology and partisanship of autism

In US politics, we've got Republicans and Democrats, also known as the Conservatives and the Liberals. (Please feel free to substitute the two main political parties from your country if you are not from the US.) I don't know if the following is accurate, but I remember hearing it somewhere in the seemingly constant barrage of US election year news: 30% of the population is Republican, 30% Democrat, and 40% Independent. Kind of makes sense if you think about it in terms of the "bell curve" and normal distributions in a population.

I've come to think that the same may hold true in the world of autism ideology. I use the term ideology quite deliberately here. From dictionary.com, ideology is defined as:

• the body of doctrine, myth, belief, etc., that guides an individual, social movement, institution, class, or large group
• such a body of doctrine, myth, etc., with reference to some political and social plan along with the devices for putting it into operation

On the one hand, there is the ideology of neurodiversity, defined on wikipedia as:

...an idea that asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be tolerated and respected as any other human difference.^[1] The concept of neurodiversity is embraced by some autistic individuals and people with related conditions, who believe that autism is not a disorder, but a part of their identity, so that curing autistic people would be the same as destroying their original personalities.

On the other hand there is the ideology that believes that autism is indeed a disorder, an abnormality in development caused by various environmental insults to a fetus or young child that must be cured in those that are currently affected and prevented in the future. The most commonly blamed environmental cause is mercury in the form of the thimerosol preservative used in vaccines, and more generally the large number of vaccines now on the vaccination schedule for young children. (The term "curebie" is sometimes used to describe this position. Although there is not an official "curebie" site like there is for the neurodiversity movement, check out The Age of Autism for more info on this position.)

Just like in politics these two "parties" have within them a broad range of beliefs, from the extreme ("all autism is mercury poisoning" and "society should accept and accommodate everyone, no matter how different") to the moderate ("we need to make society aware of the special needs of our autistic kids - and adults - and help those kids and adults make their way in the society to which they belong"). And, again like in politics, you have that overlapping area where the moderates of the opposing parties seem to be more like each other than the extreme element of their own party. (You may have noticed that I only gave one example of a moderate view, instead of separate ones for each party.) It is in this middle, the meeting point between the moderates of the two parties that you find the independents.

If you've read this blog for a while, you know that I fall somewhat in the middle, though I lean a bit more toward the neurodiversity side. But sometimes I get very frustrated at the whole discussion, the absolute statements from both parties that leave no room for deviation from the party line. I believe that this can be dangerous in politics, I also believe it to be dangerous in our efforts to understand autism and its affects on society. And at times, I feel like just dropping out of the discussion altogether because it just seems to be the same things over and over again.

But then I'll come across something like ...there of necessity will be much arguing from Dave Snowden of Cognitive Edge that makes me remember why I continue to write here:

If something matters, it is worth arguing about; consensus is for the ordinary and inconsequential things of life. Of course it does need good [wo]men if argument is not to degenerate into bitter polemic. Exploring ideas, supporting a position you do not necessarily believe in to test an argument, taking a contrary view for the sake of argument are all mechanisms by which human knowledge can advance.

I have seen the discussion about autism "degenerate into bitter polemic" all too often, and would like to think that I am one of the "good men" that help advance our collective knowledge about autism and what to do about it. I'm not much for New Year's resolutions, but for this year I resolve to continue the discussion, stir the pot, and keep the arguments as honest as I can.

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?

Canaries in the coal mine

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.)

Thought for the day - Living your own life

A consistent, recurring theme for parents of autistic children has long been, "You know your child best." While this is not always easy for parents with a new diagnosis to accept, or understand, those of us who have been doing this for a while recognize what it means.

Listen to the doctors, the teachers, the experts. Read whatever you can find. Try different approaches to helping you and your child. But in the end, do what YOU as the parent believe is best, based on your knowledge of your child. Specific programs - whether it be ABA, chelation, mainstreaming in school, etc - will never be successful if they are blindly implemented without your or your child's individual needs being used as part of the decision.

A while back I picked up Deng Ming-Dao's 365 Tao - Daily Meditations. As its name suggests, it has one Taoist meditation per day. I'm not a Taoist (I don't think), and came upon the book after reading another by Deng, Chronicles of Tao, itself a very interesting story. (To be honest, I'm not really sure if it is fiction or not - it is presented as a true story - but in the end it didn't really matter; it's a good book.) I have found that many of the meditations in the book are very useful and, indeed, practical. I've marked each of the pages with the appropriate date (there is a chart in the back of the book that does this, but I like having the dates on the page), and have referred to it off and on for many years now.

Yesterday's entry, Retrospective, resonated with me as I was thinking of those common themes of parenting, especially parenting an autistic child:

You could labor ten years under a master
Trying to discern whether the teachings are true.
But all you might learn is this:
One must live one's own life.

Too often today we try to live life like others expect us to, this is a nice reminder that our lives are our own, and that they are ours to live. Which brings to mind something I saw on a young man's t-shirt last weekend at a local Yugi-Oh tournament:

The only way to know who you are is to go somewhere you don't have to be anyone else.

"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.



tagged as: Autism, Amanda Baggs, Anderson Cooper, Sanjay Gupta, Intelligence, Neurodiversity, Autism Advocacy

Every child is unique

Yesterday, abfh wrote something that captures perfectly how I feel about being a parent - not just of an autistic son, but of both my kids (emphasis is mine):

Children are always different from their parents and from one another in a great many ways, and each child is uncharted territory. No one ever knows how well they can deal with parenting any child. It's always a matter of gaining experience on the job, observing how the child grows and learns, and loving the child enough to let the natural process of growth take place, unconstrained by the parents' needs and assumptions.

This has now found a place in my trusty notebook of things I want to have handy. If anyone asks me how I "deal" with parenting an autistic child, I'll simply show them this.

Homogenized Education

Quite a while back I posed the (mostly) rhetorical question, "Why doesn't every child have an IEP?"

I was brought back to this train of thought recently by a passage in Roy Richard Grinker's Unstrange Minds (emphasis is mine):

To be sure, debate is brewing about whether some of the these higher-functioning children should be classified as autistic or even disabled. Some disability experts contend that the problems encountered in educating children with Asperger's Disorder lie less with the individual child than with the educational system. The U.S. educational system, they suggest, has disseminated Asperger's Disorder as a category because it is useful to its attempt to make the student body as homogeneous as possible. The paradox they identify is that a child who doesn't fit in has to be seen as somehow impaired in order to justify an effort to normalize him.

This trend toward 'homogenized education,' an attempt to make sure that everyone* learns the same thing in the same way, reminds me of many - mostly misguided - attempts to do something similar in business. If you've ever heard the term Business Process Engineering, you know exactly what I'm talking about.

The fallacy in this approach, of course, is that education and learning are not processes that lend themselves to efficiency. Not perfect efficiency, anyway. That's not to say that their aren't things that can be done to improve the process.

But identifying a process and then trying to make everyone adhere to, and excel in, that process just won't work in education (just like it doesn't work in business).

* An exception to this are the "gifted" children, which I wrote about here.

Religious belief and perceptions of autism

I just posted the following in the comments to my last post, in response to a comment from jypsy, but wasn't sure how many people would see it there. So, here it is again.

I would be curious to see if there is any data concerning the effect of religious belief on how someone views autism (and vice versa). Are devoutly religious people more likely to consider autism a 'bad thing' that should be overcome (ie, curebies)? Are atheists more likely to accept autism as a part of global neurodiversity?

Or is the issue, like most everything else, more complex than those simple distinctions. (I'm sure the answer to that is yes.)

Has anyone seen any data on that?

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?

A parent's thoughts on cure and prevention of autism

In any discussion about autism, especially with parents of newly diagnosed children or friends/family who have no direct experience with autism, the subjects of cure and prevention will inevitably come up. "Can you fix him?" "What went wrong?" "I'm trying to get pregnant, is there anything I can do to make sure my kid isn't autistic?"

The answers to these questions depend quite a bit on whom you ask, and also when you ask them. In one of my early posts to this blog, I wrote the following:

"We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?"

Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and nearly unanimous response of YES!!! Ask this question to those parents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous.

In (R)evolutionary parenting, MOM-NOS describes how her feelings have changed toward her son's autism over time:

When Bud was initially diagnosed, I viewed autism as "other" - an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part.

But as I came to understand Bud better, I learned that his autism is not...one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy.

The other key thing we must consider as our kids grow older is that they will develop opinions of their own about their 'condition' in life. If you were to present me today with the cure question I asked above, I would be unable to answer. Not because I'm undecided about what I would do, but because I think at this point (15 years old) it is no longer my decision alone to make. Sure, as a parent I would expect to have some input, and would do my best to make sure my son understood the implications of both options.

If you had asked me the question 13 years ago, I would have had to decide. Not knowing then what I know now, I have no doubt that I would have quickly and unreservedly said, "Yes." But if I had known then what I know now, what would my answer have been?

pregnant pause

In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as 'preventing' autism in the child; if the autism is removed before it has a chance to "infuse every part of him and it shapes who he is in this world," then the autism will have been prevented from being a defining part of the child. Is prevention a 'bad' thing? Again, it depends on whom you ask.

If you are talking about pre-natal testing, the discussion will range from "with this test you can determine if your child will be autistic or not and decide whether or not you want to have him" to "this is the first step to eugenics and wiping out of autistics." I'm choosing not to engage in this discussion in this post, though I'm sure it will come up in the comments and in later posts.

If, however, you are talking about prevention through a "shot" like I mentioned above (I know, I know, this is not the way it would probably work - please bear with me), how would you answer the question. What factors would you consider?

I can't help but go back to the questions in my mind that prompted me to write To hear or not to hear. What do I want life for my son to be like? What options do I want him to have? What will he think of my decision when he gets old enough to understand what I have done?

If I had a child who was born deaf and was told by the doctors that through surgery my child would be able to hear, but the longer I waited the harder it would be for my child to transition from a non-hearing world to a hearing world, I must admit that I wouldn't hesitate any longer than it took me to figure out how to pay for it. Why should I think any differently about autism?

By saying I would prevent autism at an early age if I could, I'm not saying that I don't value my child as he is now. I can't imagine these past 15 years without him, and it is safe to say that my career path, my wife's career path, and my other son's life would be completely different had we not lived in Autismland all this time. But at the same time, I have no doubt that life without autism would have been just as enjoyable and rewarding, yet filled with the more 'typical' challenges that parents of teenage boys experience.

Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome. The things I do today will have impacts years from now that I could never imagine. I see one of main roles as a parent as the one who sets the path along which my children will begin their journey in life. Along with that, it is my job to help them understand the path they are on, the future paths that lie before them, and an understanding of how to navigate the world.

Or, as MOM-NOS says in (R)evolutionary parenting:

I will try to help him build the foundations that will serve him best [as an autistic person in a largely neurotypical world] - foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he's learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.

Parenting is hard, and every parent approaches the challenge in different ways. I don't like the way some people parent their children, and I am in awe at how others make it look so easy. This applies to both "typical" parents and autism parents. But it is not my place, nor anyone else's I believe, to tell another parent how to raise their children. (And no, I don't believe anyone else should tell me how to be a parent either.)

In the end, parents answer only to themselves (obvious legal/moral exceptions aside) and, when they get older, their children. I'll leave it to them to judge.

tagged as: Autism, Parenting