The Autoimmune Epidemic

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?

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 on 60 Minutes - 18 Feb 07

I've already set the DVR to record this. Though the teaser article gives a little preview of what they'll talk about, I'll withold any comments until I've had a chance to watch it.

With no known cause or cure for autism yet, researchers are trying to detect the earliest signs of the disorder so they can begin treatment earlier, giving parents some hope against a condition the government now says affects about one in every 150 children.

60 Minutes correspondent Lesley Stahl reports on ongoing research this Sunday, Feb. 18, at 7 p.m. ET/PT.

Back to school - some thoughts on being different

I spent the morning a couple of days ago at a high school freshman orientation. We all know the horror stories of the push to fit in to the social environment of high school. It occurred to me as I was watching the kids that it must be very hard for the neuro-typical kids who are ‘different.’

For autistic or other ‘special’ kids, the typical kids kind of expect them to be different. “Oh, that’s just him, he’s autistic you know.” But for the different NT kids, it must go something more along the lines of, “Man, that kid is just weird” and “Hey, Bobby, why don’t you act/dress/speak like the rest of us?”

I guess that is really just good old-fashioned peer pressure.

We can only hope that all kids are able to be themselves and achieve their own destinies, despite any attempts – however benign or malicious – to make them change.

Here are some lyrics from a song that you may recognize. A rant against the shallowness of conformity, and a hope that we can achieve more:

What happened to the dreams of a girl President
She's dancing in the video next to 50 Cent
They travel in packs of two or three
With their itsy bitsy doggies and their teeny-weeny tees
Where, oh where, have the smart people gone?
Oh where, oh where could they be?
…
Disease is growing, it's epidemic
I'm scared that there ain't a cure
The world believes it and I'm going crazy
I cannot take any more
I'm so glad that I'll never fit in
That will never be me
Outcasts and girls with ambition
That's what I wanna see

Disasters all around
World despaired
Their only concern
Will they **** up my hair

In case you don't recognize the song, it is Stupid Girls from Pink.

tagged as: AutismAsperger's Syndrome

Focusing on what we have in common

Declarations of a fixed opinion, and of determined resolution never to change it, neither enlighten nor convince us. Positiveness and warmth on one side, naturally beget their like on the other.

-- Benjamin Franklin

I had originally planned for this to be a short post to let everyone know that 29 Marbles is going to go on summer hiatus. As you can see, though, this is anything but a short post. A couple of things have come together in my mind over the last week or so that have led me to feel the need to make a few more parting remarks.

Here in the US this is an election year, which means that partisan politics is everywhere in the news. Much discussion about the value of the proposals, etc, but also quite a bit of discussion (as always) about the nature of partisan politics. Is it good? Is it bad? Is it necessary, or could we get by better without it? Some say it is vital, some say it is the root of all evil in the world today.

These thoughts were on my mind this past week while getting my daily fix of blogs, and I couldn't help notice - as Wade Rankin has - that the autism community seems to be becoming increasingly partisan. Maybe it has always been so, and I'm just now becoming aware enough of the larger autism community to realize it. But even within the sub-communities of autism I've been part of I've noticed a hardening of opinions by many people. Intentionally or not, quite often this comes across as, "I'm right and you're wrong, why can't you just see that?"

Maybe this is an inevitable result as people explore a question, examine their beliefs and understanding of the question, and decide how to move forward. After all, at some point you do have to act, and that is infinitely easier if you have a clear understanding of what you believe and don't have to worry about changing what your doing later because your beliefs change.

The other thing that happened this week is that I finally finished Walter Isaacson's biography of Benjamin Franklin (which, by the way, I heartily recommend to anyone who is interested in Franklin or the history of the 18th century). Of all the great things that Franklin did in his life, the impact he had on the writing of the US Constitution. It's not that Franklin wrote the Constitution - in fact, he was quite opposed to some of the final decisions that went into the document. Instead it was his role in getting the 13 states to open their minds a bit and actually listen to each other and compromise when necessary that resulted in a successful Constitutional Convention.

Like the early United States, the autism community is divided into several independent 'states', each with their own opinions, desires, strengths, and weaknesses. There are many differences, but there are also many similarities. Much of the dialog today in the autism community - I include all the blogs, organizations, support groups, &c as part of this community - seems to me to focus on the differences between the various sub-communities.

Maybe the differences between the two major parties in this debate - those who advocate neurodiversity and those who advocate a cure - are irreconcilable, but it seems to me, as a parent, that we all share the goal of making sure that there is a place in society for our autistic children and that they can find that place. To that end, I believe we need to find common ground and work toward that. Only by keeping dialog and discussion open, and really listening to what others have to say, can we achieve this.

Though this blog is going on a break, I will still be online this summer and I expect you will see me writing in comments to others' blogs. Have a great summer everyone (and for those of you south of the equator, I hope your winter isn't too harsh).

From Franklin's closing address to the Constitutional Convention:

I confess that I do not entirely approve this Constitution at present; but sir, I am not sure I shall never approve it: For, having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions even on important subjects, which I once thought right, but found to be otherwise. It is therefore that, the older I grow, the more apt I am to doubt my own judgment and pay more respect to the judgment of others.

Most men, indeed as well as most sects in religion, think themselves in possession of all truth, and that wherever others differ from them, it is so far error. Steele, a Protestant, in a dedication, tells the Pope that the only difference between our two churches in their opinions of the certainty of their doctrine is, the Romish Church is infallible, and the Church of England is never in the wrong. But, though many private persons think almost as highly of their own infallibility as of that of their sect, few express it so naturally as a certain French lady, who, in a little dispute with her sister said: "I don't know how it happnes, sister, but I meet with nobody but myself that is always in the right."

In these sentiments, sir, I agree to this Constitution with all its faults - if they are such - because I think a general government necessary for us.... I doubt, too, whether any other convention we can obtain may be able to make a better Constitution; for, when you assemble a number of men, to have the advantage of their joint wisdom, you inevitably assemble with those men all their prejudices, their passions, their errors of opinion, their local interests, and their selfish views. From such an assembly can a perfect production be expected?

It therefore astonishes me, sir, to find this system approaching so near to perfection as it does; and I think it will astonish our enemies, who are waiting with confidence to hear that our councils are confounded like those of the builders of Babel, and that our States are on the point of separation, only to meet hereafter for the purpose of cutting one another's throats. Thus I consent, sir, to this Constitution because I expect no better, and because I am not sure that it is not the best.

tagged as: Autism

Autism and the DSM (part 1)

In my post Who decides what’s autistic, anyway? I posed the question of how, if at all, the diagnostic criteria for autism should be modified in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM. This made the implicit assumption that autism should be defined in the DSM at all. But is that a valid assumption?

Every now and then, like in MOM-NOS’ post that inspired my post on prevention and cure or some comments to that post, homosexuality is used as an analogy to autism as a way to discuss how people and society’s views can change toward those who are different from the cultural norm. In fact, homosexuality was included in the first two editions of the DSM and was only removed in 1973.

One of the basic arguments that anti-cure autism advocates have made – me included – goes along the lines of, “There is nothing to cure, that’s just the way they are.” Is that the same as saying, “Autism is not a disorder, it is just a different way of ‘being’, like being shy, an extroverted socialite, or (sticking to the analogy) gay?” And if so, is that the same as saying, “Autism shouldn’t be in the DSM.”

Should autism – or Pervasive Development Disorders in general – be included in the DSM?

Before we answer, it is important that we consider the role an autism diagnosis plays in the life of an autistic child. A diagnosis of autism is the basis for much, if not all, of the educational and other services that autistic children receive from the government and education system. (At least that is the case in the US.) If autism is not a disorder described in the DSM, and therefore not recognized as requiring special accomodations such as an IEP, what does this mean?

Granted, even without a diagnosis it would be obvious that our autistic kids are different and will still require and receive some special services; NT kids are identified by local school personnel all the time for speech related issues early in elementary school and given the appropriate speech therapy, all without the formal process of IEPs. But most autistic kids need a bit more support and services than a local school is able (or willing) to accommodate on their own.

If we argue that our autistic kids don’t need to be “cured,” how can we justify that our autistic kids should receive special treatment and services above and beyond what the other kids who also don’t need to be cured of anything receive. [My personal response to that is that every child should have an IEP, but I know that is not going to happen for many ($$$$) reasons.] Especially when you consider that in many places it is difficult enough getting the needed services when there is a diagnosis.

So, should autism stay in the DSM? I say, “Yes.” But this, in turn, raises some more questions:

If I think that autism should be in the DSM, am I not admitting that there is something ‘wrong’ with my child?

And if I’m saying that, how can argue against a cure?

To be continued….

tagged as: Autism, Asperger's Syndrome, IEP, Parenting, DSM

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