The Age of Autism: Rattled Regulators

Although the recent problems at the CDC and the FDA are not directly linked to the ongoing controversy over the possible connection between this nation's vaccination program and the autism epidemic, those events are quite telling. Read Dan Olmsted's take on it here.

WHERE IN THE WORLD IS WADE RANKIN?

I apologize for not posting much lately, but we’ve been getting ready for a big move; it’s been a little busy. I’ll try to put something meaningful up as we get through this, but you might not hear a whole lot from me in the next couple of weeks.

Thanks for all the good wishes. It means a lot.

GENETICS AND THE ENVIRONMENT

I want to draw your attention to some good reading out there bearing on the question of the respective roles of genetics and environment in causing autism spectrum disorders.

Dr. Julie Daniels, an Assistant Professor of Epidemiology and Maternal and Child Health at the University of North Carolina, wrote an editorial published in the July 2006 edition of Environmental Health Perspectives that is well worth reading. (Thanks to María Luján for bringing it to my attention.) Dr. Daniels notes that:

Speculation that the environment plays a role in the development of autism primarily comes from two observations: a) although concordance among monozygotic twins is high, it is not perfect, and a specific “autism gene” or set of genes has not yet been identified; and b) the prevalence of autism is higher than previously thought-if it is rising, the rise might be associated with a shift in the environment.

Dr. Daniels displays far more logic than one is accustomed to hearing in our little debates, when she writes that the confounding of causal research is the likely result that what we call ASD may result from a variety of gene-gene and gene-environment interactions. Although conceding that the “perception” of increased prevalence may result from changing diagnostic criteria or increased availability of diagnostic tools and services, she also acknowledges the possibility that we may be seeing a true increase in prevalence. There is little in the way of “systematically collected data in the same population over time that can be used to evaluate true prevalence rate trends.”

After stating that environmental factors could explain true shifts in prevalence, and further noting the difficulty in assigning causal based on ecologic associations, Dr. Daniels writes the following, which I partly agree with:

It is unlikely that one or even a few specific environmental agents are responsible for the majority of ASDs. It is more likely that some individuals have enhanced susceptibility to insults from the environment that may, in combination with their genetic predisposition, lead to autism. It is rarely possible to distinguish these complex relationships by simply evaluating trends in the general population.

The much publicized concern over vaccines and autism has primarily been based on such ecologic trends. More rigorous studies evaluating vaccine-related hypotheses are needed to incorporate individual-level exposure data, account for alternate exposures to metals, and evaluate susceptible subgroups of the population. However, attention should also be given to other environmental hypotheses.

Although I agree that environmental insults other than vaccines and thimerosal need to be considered, I think Dr. Daniels underestimates the probable connection of the single most pervasive exposure to a generation of children. Nevertheless, I am delighted that a respectable epidemiologist recognizes the limitations of the epidemiological evidence and is displaying an open mind on the question.

To state the obvious, I think the more we learn about the processes of autism, the more clear the causal connections will become. If well-designed research shows I am wrong in my opinions, I can live with it. What I can't stand, however, is the tendency of so many scientists to bury their heads in the sand. Dr. Daniels' willingness to follow where the science may lead is refreshing.

And that brings us to some exciting things going on in the study of neuroscience as it relates to autism. One of the most interesting presentations I saw at the Autism One Conference this past May was by Dr. Manuel Casanova, who has been researching the differences in minicolumns between brains of autistic individuals and neurotypical persons.

Ian Parker, takes a detailed but very readable look at Dr. Casanova's work, and reaches conclusions that sound consistent with what was reported at Autism One:

Reduced minicolumn width appears to be a prerequisite for autism. But, the reported minicolumn widths found within autistic brains are still within the normal distribution of minicolumnar width, albeit at the tail end (Casanova 2006). This suggests to me that the existence of narrow minicolumns is not enough by itself to result in an ASD diagnosis. The key instead appears to be a reduction in inhibition within minicolumns, rather than width alone. Reduced width increases the consequences of reduced inhibition, but does not automatically cause it. In effect, a brain with narrower minicolumns may be less robust, and therefore more vulnerable to the complications that could come with deviation from the narrow tolerances within which the brain functions. In a brain with wider minicolumns, a loss of inhibition would not have as significant an impact, as minicolumnar width (and therefore distance between minicolumn information processing cores) would still exist to reduce intercolumnal spill, and thalamic projections would result in fewer minicolumns per macrocolumn to be affected.

Even with reduced minicolumn width, a “second hit” is required for there to be a manifestation of dysfunctional autistic symptoms. Ian's conclusion suggests that the notions of a cure and maintaining neurodiversity may not be mutually exclusive. Read it here. (The conversation taking place in the comments will make your investment of time doubly worthwhile.)

OLD DADS ARE THE NEW REFRIGERATOR MOMS

The other day, two news stories of interest came out. One reports on a study linking autism to gut microbes, and suggests the benefits of administering probiotics.

The other story tells of a recent report that purports to find a correlation between autism and the advanced age of fathers. Never mind that the “findings” were extrapolated from a very small sample of data over 20 years old, which didn’t take environmental exposures into account. It was hailed as convincing evidence that autism is primarily genetic, whether or not anything was read other than the abstract.

It was predictable that the media would jump all over the “old fart” story and virtually ignore the study that might implicate an explanation ⎯ and a solution ⎯ that did not involve genetics. Equally predictable, however, is that Dan Olmsted would look beyond the press release and actually question the “findings.” Read Mr. Olmsted’s take here.

Most rational people accept that genetics plays a role in predisposing children to autism. It may even be the primary factor in some cases. But one cannot add two and two together and try to convince me that the sum is 300,000.

YOU MIGHT BE A CUREBIE IF . . .

Of all the “fighting words” in any discussion about ASD, none arouses such passion as “cure.” The problem is, no two of us really share a common definition of the word. So it’s a word I don’t often use, but it’s a word I believe in.

For me, the effort to “cure” my son means that I want to see every impediment removed that might otherwise prevent him from achieving full independence in a world that is often unfriendly to neurotypical and autistic alike. I believe that many of his deficits (oops, there’s another “fighting word”) result from physical conditions that can be ameliorated. The point of this post is not to debate the validity of that belief, but rather to explore the politics of being a “curebie.”

“Curebie” is the word that some critics use to describe people like me. I suspect it is meant as a term of derision, but I refuse to see it that way; I guess I am embracing my curiebiedom.

In any event, a blogger who refers to herself as the Autistic Bitch from Hell (or abfh), has given us a definition of curebieism that frankly confuses me. I no longer know if I’m a curebie or not.

While I was reading blogs yesterday, I came across a post by a worried father who believed that autistic activists were opposed to any attempt to improve an autistic child's health. The father wrote that he was not trying to cure his daughter’s autism, but he was afraid that when she grew older, she might hate him for giving her vitamins and a healthy diet.

. . .

Then I started to wonder if his misconception about autistic activists came from reading rants against “curebies,” which usually have no definition of the word. I decided that it would be useful to clarify just what goes into the curebie mindset and why conscientious parents who care about their children's health and well-being are not curebies.

The defining characteristic of a curebie is a fanatical desperation to destroy a child’s autistic traits in their entirety. Autism takes on a separate and distinct identity in the curebie mind; it is personified as a demonic foe that must be defeated at all costs. The child ceases to be seen as a sentient person and instead is treated as if he were a battleground for a cosmic struggle between good and evil. Jonathan Shestack, co-founder and president of Cure Autism Now, exemplified this mindset when he wrote that autism parents do not have a child but “a shell, a ghost of all the dreams and hopes you ever had.”

Well, I happen to disagree with the quote attributed to Mr. Shestack. My son is not some empty shell, and I have never particularly stopped to think about any particular dreams I had or have for him. My only hope for him has always been to find his own place in the world. His ASD seems to stand in the way of that, but it is not some inherently evil force. It is a problem: hopefully a solvable problem. So have I been living a lie? Am I not a curebie?

Some of the comments to abfh’s post add to my confusion. In particular, David Andrews and Joseph, both of whom I have long disagreed with on so many questions, each voiced disagreement with the seeming article of faith among some quarters that all curebies harbor a secret desire to kill our children. After that refreshing acknowledgment that we are not all monsters, Mr. Andrews had this to say:

. . .much as the more vocal ones from the ‘curebie’ groups have this dramatic way of looking at things, I’m not sure that Wade Rankin is the same as these others, and I'd say that most probably aren’t... just those more vociferous ones.

I certainly appreciate the fact that Mr. Andrews believes me to be somewhat reasonable, but the key to understanding the situation lies in the phrase “most probably aren’t,” although my understanding may not truly be what Mr. Andrews intended. He probably only meant to convey that all curebies don’t fantasize about killing our children (which, in fairness to abfh, is apparently conceded as she edited her post to correct what she referred to as a “generalization” by noting that only “some” curebie parents feel that way. I certainly don’t want to open up the debate as to who may actually have such thoughts, as it puts me in the position of speaking for another. (Personally, I cannot conceive of any justification for killing one's child.) What I found noteworthy in Mr. Andrews’ comment, whether he meant it this way, is the implicit acknowledgment that there is not one uniform set of values and opinions held by curebies.

Whether any of us like it or not, we all find ourselves divided into subcommunities of what I have been calling the “greater autism community.” That doesn’t mean that all those we think of as being in the “neurodiversity” camp share the same exact opinions, nor does it mean that all “curebies” take the same approach to every issue. Each of us holds differing opinions as to the nature of autism and the correct response thereto, those opinions being formed primarily by the experiences of our individual families. Yet we find ourselves grouped into general subcommunities because Kevin Leitch finds he has more in common with Kathleen Seidel than he does me, and I have more in common with Erik Nanstiel than I do Kev and Kathleen.

That is not to say that I feel comfortable sharing a subcommunity with all curebies. I have done my fair share of wincing in the last year or so, and I feel reasonably sure that some members of the neurodiversity subcommunity have felt likewise about comments from within their group. But the fact that I have those occasional feelings, or that I sometimes avoid using the word “cure,” does not really make me less of a curebie. I know because abfh has given me the ultimate answer:

Here’s a quick test for any parent who may still be unsure of what curebie-ism is. If you care whether your autistic child thinks you are a curebie—you’re not one.

What is raised here is an ethical question that is impossible to answer with certainty. As my friend, Ginger, once said, in response to a question asking who we were to decide that our children needed curing:

Who are we? We are their parents.

Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold.

We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.

Although I hope my son approves of our response to his ASD (and I believe he does and he will), that is not something I spend a lot of time worried about. This is how I’ve answered that question before:

One of the more aggravating criticisms often directed at us is that we desperately seek a cure not for our children’s autism but really for our own shattered dreams. Nonsense! As the father of two older, neurotypical kids, I can confidently state that I gave up on having my children live out my dreams a long time ago. I simply want all of my children to live out their own dreams. But I still must confess that I have one dream about my young son. In my dream, he has reached the rebellious stage of adolescence. He angrily confronts me, and he demands to know how he could possibly be the offspring of someone so thoughtless as to deprive him of an integral part of his personality. Why, my son asks rhetorically, did I ever think it necessary to “cure” him; did I consider him “defective?” Without waiting for a response, my son storms out of the house the house and walks outside to his waiting friends, to whom he complains about how I just don’t understand him the way his friends do. If my son would only look to the front window of the house, he would see me peeking out from behind the curtain, listening to him interacting with his friends. And he would see me grinning from ear to ear.

Wade Rankin
Curebie