When last we left off Dr. Boyle of the CDC had been recounting ten years of “tremendous progress” in autism research. I know, I know…..Ten years ago autism affected 1 in 250 children, now autism affects 1 in 110, and 1 in 70 boys. It is as if these people feel no sense of urgency at all.
However, Mt. Sinai almost redeemed the day with the exceptional presentation of Dr. Irva Hertz-Picciotto. Dr. HP was phenomenal. Although HP is neither a parent of an affected child nor a clinician she speaks about autism as a disease and autism as it affects human beings tremendous great compassion and insight. I hope the other presenters took notice of HP’s ability to connect with the audience while addressing the cutting edge autism research. HP was the only presenter to discuss exciting new just published environmental science. She presented a truly ground-breaking study connecting incidence of autism with closeness to a freeway. The argument for the substantial influence of environmental factors in the growth of ASD grows stronger by the minute.
All previous speakers, Dr. Landrigan, Dr. Birnbaum of the NIEHS and Dr Coleen Boyle of the CDC spoke in great excess of their allotted time. After almost 3 hours of lectures I attempted to ask a simple question and got shut down by Dr. Phil “No questions!” Landrigan. This was almost funny because we had just heard from Birnbaum and Boyle, at great length no less, about how essential stakeholder input is into their work. On an on about how they partner with the families and the critical nature of the ASD’ community’s input.
I guess that commitment was operating in suspension at Mt. Sinai?
One of Dr. HP’s first remarks was that the autism research community needs to talk less and listen more. What a revelation! Thank God someone said it. She discussed the shameful history of autism and how it was standard practice for physicians and researchers to blame the parents for their ASD child’s condition until the late 1970s. HP was the ONLY presenter to acknowledge the tremendous suffering of those acutely affected and how autism can devastate families. HP discussed how seriously autism can challenge the family system and how siblings are impacted. I was sitting nearby a group of young doctors and medical students. They were furiously taken notes at this point. It is vitally important that any autism research discussion spend just a few minutes giving the audience the appropriate human context of this disease. No one else did that.
Dr. HP did a wonderful job breaking down the numbers behind the exponential increase in autism. HP’s work solidly concluded that at least 50% of new cases do NOT reflect greater awareness or widening diagnostic classifications but are indeed the result of a vast and all too real increase. Sorry Dr. Eric Fombonne.
Dr. Craig Newschaffer gave the next presentation. Dr. Newschaffer spoke about the EARLI program. He went into great detail about the program’s methodology. It is exciting that scientists will be following women before they even become pregnant until their child is age 3. It is even more exciting that all environmental exposures will be documented. However, EARLI is only looking for multiplex families- Moms who already have an ASD child. This is troubling.
There is already a huge industry of multiplex family data collection, AGRE for example. For many years families have been frustrated that the enormous financial investments in these multiplex studies have yielded small benefits. The profile of multiplex and singleton families (aka the vast majority of autism families) are vastly different and much of the information is not transferable between populations. The genetic component of multiplex families is obviously more powerful than in singleton families. It seems counterintuitive that multiplex families would be the right population for a meaningful or ground-breaking the study of possible environmental triggers.
Just because it is easier to study multiplex families doesn’t make it the best choice.
Obviously I would have liked to ask about this issue- but no questions allowed. I know many, many other Moms in the audience wanted to ask about the value and relevance of these hugely expensive long-term studies for those living with autism today. What kind of short-term results and insight will EARLI offer? If so when? Researchers have to remember that are most often speaking to parents who already have a child with autism. If you had Stage 3 Breast cancer how would you like to sit through an endless lecture on “Learn The Signs” (Dr. Boyle) or hear only about breast cancer research that might be completed in 5-10 years? I am challenging the research community to pair every single long-term study with an equally powerful short-term project on treatment.
I can “out autism” almost anyone. I will discuss ASD day or night, but Mt. Sinai really bested me. I simply could not sit through another 45 minute lecture and another one after that and another one after that and another after that…I would never made it to 5:00, conscious that is.
The Moms who stayed until the end told me that they were perplexed about the Korea ASD study. So much money has been invested into this, and outside of incidence rate what of value has been learned -- it was very unclear in the presentation. How has this expensive Korean epidemiological study helped the families in that room? It seemed like nothing definitive was found.
When Dr. Landrigan finally opened up the room for questions the audience was ¾ gone. People can only take so much. There has to be a give and take in these conferences. Nevertheless, it was very good that Mt. Sinai made a first step towards environmental research. Let’s hope next time we see more audience participation and more novel presentations. The conference room was comfortable, amenities great and the people working there were very helpful.
Katie Wright is Contributing Editor for Age of Autism.