Lisa Rudy posted "Misinterpretation of Autism News Can Cause Serious Confusion" over at About.com's autism site, and the comments have gotten interesting and clearly demonstrate the growing gap between what consumers know and believe and what researchers have determined. This is something I've written about before, more at the beginning of the blog back in 09 than recently. This growing gap, coupled with the confidence that consumers have that their assessment of what autism is, what is known about it, and what treatments should be used (think the latest fecal transplants, brought to attention by LBRB), is a dangerous gap.
I'm in no way suggesting I am an expert on autism; I'm aware of just how much research is out there and that I can never read it all, but I do work hard to make sure that what I write about autism is backed up by solid research and to note the limitations of the research (and my knowledge base). Keeping abreast of autism research (just the reputable stuff) takes a large investment of time and energy, and parsing through the woo, pseudoscience and other filler stuff out there would more than exhaust any one person's time.
When there is a consensus in the literature, as there are on known causes of syndromic autism, as was discussed on the comment thread at Rudy's post, there seems little reason to debate about it; these are known, non-debated causes. And yet, that's exactly what happened, with some individuals choosing to go on what they could readily recall or already believed rather than looking to the actual research literature and experts in the field.
This demonstration of the gap in the knowledge and the certainty with which many in the autism community move is potentially dangerous. Worse yet, I'm not sure there's any fix to it; where there is certainty, there is no way in, no way to grow, to learn, to correct past mistakes.
I offered known causes of syndromic autism:
Prader–Willi and Angelman syndromes
Inv dup(15) or idic(15) syndrome
Neurofibromatosis type 1
Macrocephaly and overgrowth syndromes
Tuberous sclerosis complex with autism
22q13.3 deletion syndrome
Adenylosuccinate lyase deficiency
Duchenne muscular dystrophy
Caglayan, A. (2010). "Genetic causes of syndromic and non-syndromic autism." Developmental Medicine&Child Neurology, 52(2), 130-138. doi:10.1111/j.1469-8749.2009.03523.x.
Note the title of the article cited. Causes. Not related conditions. Not genetic vulnerabilities. KNOWN CAUSES. This isn't a debate in mainstream medicine. And yet, folks want to argue about what are considered to be facts by the experts in the field. By the qualified experts in the field. If that isn't the arrogance of ignorance speaking, then what is?
I ended up closing my comments (as there can be no illuminative debate when one side ignores the facts) with the following:
It's an interesting choice to decide that your interpretation of causes trumps the neurologists and other experts in the field who've spent decades looking at this. In addition to the one article I cited, there are many more that use those words: known causes. There's Mary Coleman's The Neurology of Autism, an excellent text that lists even more genetic disorders that cause autism (remember that autism is diagnosed based on a list of descriptors). If a genetic syndrome can be found, it is syndromic autism.
I'm afraid the Autism Society of America even gets that, although there's not much information on it and it then sends readers over to a related conditions page: http://www.autism-society.org/site/PageServer?pagename=about_whatcauses.
Sites like the Autism Society of America and the National Institute of Neurological Disorder and Stroke (http://www.ninds.nih.gov/disorders/autism/detail_autism.htm) give a quick and woefully incomplete covering of autism. It's short-sighted to base one's knowledge of autism on either site; neither provides enough depth to make one particularly knowledgeable about pervasive developmental disorders.
There are some in the autism community who think there is little known about autism, but that is not an accurate reflection. Perhaps that is because much of the research is not available to the public for free, and often the textbooks are not cheap or widely known. For example, the big granddaddy of them all, theHandbook of Autism and Pervasive Developmental Disorders, a two volume set and a heck of a read at nearly 1500 pages, distills all that is known into the "bible" of autism experts, although it's now five years old and in need of updating. It's also 200 bucks and ranked 715,707 at Amazon; it's flat out not going to be seen by parents searching for autism related books at Amazon. What information does get consumed by parents is often inaccurate, unsubstantiated, and far off the mark of what decades of research is showing.
In no way does this wall between the research and the consumers reflect poorly on the consumer who is going off of incomplete data, but it is a real problem, and it is a growing problem, especially when the consumer becomes fixed in his or her position.
I don't know how to bridge this gap, but it's apparent when folks are closed into their position and certain that they know what the answers are, there's no point in continuing to discuss it with them. I also don't think it's realistic that all parents are going to read a 1500 page text written for professionals or even Coleman's slim text, also written for professionals in the field.
There's also obviously no way to keep crap from being written and sold, claiming to have all the answers on autism. Anyone can publish a book and get it listed on Amazon, and we've seen, even with major publishing houses, that accurate and factual information isn't necessary to get a book published.
There are no quick or easy answers, and it is both frustrating and frightening to think of the thousands of parents on groups like the autism-mercury group and others like it trading their fecal transplant recipes around, the best way to chelate their child, how to get the suppositories to stay inside the rectum until dissolved, whether to give an enema first, etc. It is frightening to think of these children whose parents use them as guinea pigs, who treat their bodies with no respect (I know, I know, these parents who do this are on a mission to cure their children and find their own acts nothing short of heroic and reflective of martyrdom).
All I can personally do is try to take the literature that so many parents have never heard of, don't know exists, and try to make it accessible, and then hope that some of those folks who are locked into thinking because they've read one website or two and McCarthy's books, they know it all. And while I do that, I must keep in mind that I do not know everything. I can and will never know it all, and I have to hope that this awareness of my own inadequacies will at least, if not render me humble, help me remain compassionate.
A Dangerous Knowledge Gap: The Autism Wars