What an Autism Organization Should Be?

Sullivan, over on LBRB, recently blogged about a new program targeting autistic adults at Boston's MGH hospital. This program has been made possible by a generous endowment from the Nancy Lurie Marks Family Foundation. According to the article,

Her (Nancy Lurie Marks) gift to Mass. General will pay for a range of new specialists and programs, including an electronic patient data repository for research, adult neurologists, social workers to help adults find work and housing, and a communication program to evaluate children and adults for devices such as computers that produce speech when a patient types on a keyboard. Bauman, who founded the hospital’s multidisciplinary LADDERS program for children with autism, will become the MGH Distinguished Scholar in Autism, an endowed position, as part of the gift.

I had never heard of this foundation before, so I went to their website. There I found that the organization had been around since 1977, and according to the "About NLMF" section,

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

When they're not supporting research and services to autistic individuals, the foundation has also sponsored documentaries such as "Autism is a World" and "Voices of Vision: Quality of Life for People with Disabilities: Equity, Opportunity and Inclusion".

Now, this organization probably isn't perfect. Not everyone would be in favor of everything they do. Some of their research money supports genetic investigations, and some of their money has gone to support investigations using ABA type therapy. But in going through their website, what is notable is what is NOT there. No movies moaning how horrible living with someone with autism is. And no hedging regarding vaccines, mercury, or whatever other voodoo people want to ascribe autism to.

In fact, the overall impression I get from reading through the Nancy Lurie Marks Family Foundation website is that we've regressed as a society since 1977. Because evidently back then people set up foundations that respected individuals and wanted to work to help them succeed, as opposed to more recent times when people set up organizations to create "awareness" of how miserable autistics' lives are, and to support all of the non-scientific voodoo out there to "cure" autism.

Where are all the autistic children of dentists?

photo credit-Conor Lawless
Creative Commons license

Once again, the purported link between mercury/thimerosal and autism is in the news. This months "Archives in General Psychiatry" contains an article which looks at the continuing increase in the reported prevalence of autism in California while the amount of mercury is declining, and there is also an accompanying commentary in the same issue.

This article and commentary were discussed by Kristina Chew. Mark Blaxill, a leading proponent of the "autism=mercury poisoning" line of thought, backpeddles somewhat without totally conceding that the theory is dead. Brett of 29 Marbles asks what it would take for either side to change their mind.

Although I ultimately look to science to inform my opinions on things such as causality, I am not above referring to common sense, which is not a bad place to start when considering what kind of studies should be done.

One of the things that has made me doubt the whole autism=mercury poisoning thing from the start are dentists, and the amalgams they place. Specifically, where are all the autistic kids who had dentists and dental assistants as parents? More specifically, where is the large group of autistics that are 35-55 years old that had dentists or dental assistants as parents?

Why do I choose that age range? For a couple of reasons. Since autism wasn't described until the 1940's or so, I wouldn't expect older autistics. Also, this period would correspond to a time when dental caries were rampant (pre-fluoridation of water), as well as a time when handling of mercury and amalgam in dental offices was very casual. Mercury and metal filings (silver and zinc) used to be hand measured into a device, which then shook them together (right at the chairside) until they became a soft "amalgam" which was then packed into the cavity in the tooth. The dentist is typically "right in your face" as (s)he packs the amalgam into the tooth.

While some people today still blame mercury fillings for the exceedingly small amount of mercury vapor that is released by chewing on amalgam fillings, no one disputes that the greatest period of exposure to mercury is when the amalgam is first being mixed together. Since the 1970's or so, dental amalgams have come in a pre-proportioned sealed container, which minimizes the amount of mercury in the air in a dental office. Also, the number of amalgams that are placed today, while still large, pales compared to the past. Fluoridation started in the U.S. in 1955, and by the 1960's started to catch on. This resulted in a lot less exposure to mercury per child.

But between the time that autism was first described and the decline in amalgam fillings being placed in children there should have been an epidemic of children identified with autism, which declined as fillings per child dropped off. There should have been an even bigger incidence in the children of dental workers (dentists and dental assistants) who were occupationally exposed on a large scale to mercury vapor.

Where are they?

There are no studies that have shown this, and I am not even aware of any anecdotes of this phenomenon happening.

My Kind of Research

photo credit-Staci Peters

Lately my two selves have been somewhat at odds with each other-my science educated self and my parent self.

As a person trained in the scientific method and believing in things that I can test and measure, one of the first things I did when we got a diagnosis of autism for Buddy Boy was to immerse myself in reading as much research as I could get my hands on. If there were things out there that were proven to help, then I would find them and get that help for him.

One of the first things I discovered was that there was a bunch of new age, hocus pocus kind of stuff out there that had absolutely no science behind it. Sure, on an initial scan of some of the literature talking about causation and "cures" there were things that seemed to make some sense. But when I looked with a critical eye, looking for hard data, there was just no "there" there for most of this stuff.

My reading did seem to indicate that we had "missed the boat" by not instituting ABA therapy before the age of three (Buddy Boy was almost 4 when doctors stopped talking about sensory integration disorder, probable ADHD, and language delay and finally uttered the "A word"). I read up on ABA therapy anyway, and quickly realized that classic ABA therapy consisted of basically putting my kid into a Skinner Box, which I wasn't really too fond of (note: I know that all "ABA" isn't created equal, so don't all pounce on me if it's working for you).

The parent side of me has always wanted to protect my son, nurture him, instill a love of learning and an ethical base, then turn him loose on the world to do great things (what I'm sure we all want, basically). Upon getting a diagnosis, and as Buddy Boy's OCD behaviors and touchy temperment became more evident, the parent in me has wanted to put emphasis on getting the best supports educationally and socially that I can for my son, so that he has the best chance of living independently and being a productive member of society.

I have thus become much less enamored with research, especially into causation. Forget population statistics, genetics, and the environment. I have an "n" of 1 to take care of. If something isn't directly helpful to us in caring of our son, then it's a lot less interesting to me. Sure, I still follow all types of research when I come across it, but following most research has become a side issue rather than the main event.

So it was with some interest that I read this announcement from researchers at Georgetown University.

Using advanced brain imaging techniques, researchers at Georgetown University Medical Center have watched how humans use both lower and higher brain processes to learn novel tasks, an advance they say may help speed up the teaching of new skills as well as offer strategies to retrain people with perceptual deficits due to autism. ...

Rather than being aimed at isolating 100's of genes that contribute to autism (important stuff, just not too helpful in the here and now for me), they looked at something that is going to be important to Buddy Boy for the rest of his life, learning.

...In the March 15 issue of Neuron, the research team provides the first human evidence for a two-stage model of how a person learns to place objects into categories discerning, for example, that a green apple, and not a green tennis ball, belongs to "food." They describe it as a complex interplay between neurons that process stimulus shape ("bottom-up") and more sophisticated brain areas that discriminate between these shapes to categorize and "label" that information ("top-down"). ...

I've always thought that Buddy Boy's inability to remember the names of any of his classmates (with a couple of notable exceptions) was at least partly due to the way his brain filed away peoples' faces. If these researchers can shed some light on how we file away things in our memory, then concrete methods at assisting those with trouble with these pathways could be designed.

These kinds of studies are, to me, the kinds of studies that will shed some light on what specific kinds of supports are the most helpful in preparing my son to live independently. And that's a great thing, no matter how you slice it.

Joe is 210