The purpose of this meeting was to bring together a diverse group of scientists, stakeholders and autism organizations in order to discuss ASD prevalence trends and opportunities for further research. This is certainly a worthwhile endeavor given the skyrocketing increase in autism spectrum disorders. Unfortunately, highly conservative groups and thinkers were over represented while parents and innovative scientists were in short supply.
Thank you to Dr. Geri Dawson of AS for opening this meeting to the public and for arranging for the meeting to be available on the internet. Dr. Rice did a nice job of re-iterating questions that were posed off mike. I received a comprehensive outline of the day’s discussion a week in advance, well done. Unfortunately some parents could not listen into the meeting after the 250 limit on listeners was reached. Maybe in the future, lines not being used, by those who reserved them, can be made available to parents on the waiting list.
Dr. Paul Shattuck and Dr. Peter Bearman gave their usual stump speeches about why the ASD increase is mainly due to greater awareness and parental age. Right. They are weirdly obsessed with this parental age issue. More on that later. Bearman also hypothesized that some of the increase could be the result of a virus.
After that we heard some insightful presentations from Dr. Durkin and Dr. Hertz-Picciotto. Durkin spoke about the massive unexplainable increase in ASD between 1994 and 1998. Durkin found that maternal and paternal age were minor contributors in the rise of autism, explaining only 3-4%.
Dr. Hertz-Picciotto specifically studied the 600% increase in ASD cases from 1990 to 2001. Dr. H.P. argued that surprisingly little of the astronomical rise of autism could be explained by better diagnoses or greater awareness. She found that maternal and paternal age accounted for just 4% of the increase in ASD cases. Clearly there are major environmental factors involved in the rise of autism that must be identified.
Then we heard from scientists studying Parkinson’s, asthma and cancer. None of these diseases have experienced the meteoric rise of autism. It is also worth noting that vast majority of people with these diseases marry and have children. 99% of people with autism (I do not know about Asperger's) do not procreate. Autism’s number should be falling, not rising.
Afterwards the groups divided into panels to discuss specific epi questions. Thank God for Mark Blaxill of SafeMinds. There was no way I could have withstood the torture of listening to the group 4 scientists had Mark not been present. Most of these scientists do NOT believe the increase in autism is real.
I have no idea why but many of these researchers in group 4 were not specialists in the field and seemed to possess little knowledge of autism. Why not give those seats to the perpetually under-represented autism stakeholders? These groups have tens of thousands of dues paying members. I was amazed that the NAA, TACA, the Autism Research Institute or Generation Rescue were not invited to participate in this workshop, yet so many non ASD experts were?
NAA, TACA, GR and ARI all finance cutting edge research. Together these organizations represent 50,000 stakeholders! These groups work with families everyday. They know all about ASD clusters and on the ground prevalence issues. These organizations finance huge academic, clinical and ASD parent conferences at which scientists present the latest and most innovative research. ARI even trains pediatricians how to better recognize, diagnose and treat children with autism!
Autism Speaks, one parent from SafeMinds and members of the neurodiversity movement were the only stakeholders invited to this CDC meeting. Why are Dr. Coleen Boyle and Catherine Rice unwilling to allow these Moms, who representing 50,000 families, participate? But guess who Rice and Boyle did invite to represent the public? Get ready for this… Roy Grinker and Eric London.
I mean, please, together do Grinker and London represent 100 stakeholders, 200?
Dr. Lawler said that maybe now, just maybe autism is increasing, but wait, that it wasn’t true 5 years ago. I know, delusional. Dr. Lawler also gave herself a pat on the back for all progress they have made. Doubly delusional. For the past decade Dr. Lawler has been in a position to support meaningful and game changing autism research. Obviously that has not happened. President Obama promised that autism and cancer were his top medical research priorities. Obama wants to see the best and brightest minds invested in cutting edge cancer and autism research. We desperately need to see new scientific leadership.
Dr. MacMahon expressed great frustration regarding the community of families. MacMachon asked for the group’s help in persuading parents to stop disagreeing with him because he knows the science and research best. MacMahon went on to explain that he was at the end of his professional career and is “tired” of dealing with parents’ questions. As if that were not enough, MacMahon said he was done studying autism and immune issues because and there is no relationship. I mean where does one even begin addressing this?
Mark Blaxill responded that it was exactly that condescending attitude that has created the vast divide between parents and researchers. He challenged the researchers to actually listen to the families rather than lecture them. Blaxill expressed disbelief that they were having a prevalence debate at all. There are more cases with autism because there are more children with autism. This is not a big mystery. Blaxill continued by stating that the CDC has known about this problem for 20 years and has done precious little to investigate or stem the tide of the biggest childhood healthcare disaster of our time. Let’s get going by embracing the most innovative science and a meaningful stakeholder presence.
It very disappointing to hear Dr. Craig Newschaffer talk about how we can never know if the increase in autism is real. “We can never know.” Of course we can know! Look at the 1,000% increase over the past decade. “We can never know,” please. I can never know if one day Christian will wake up in the morning singing “The Star Spangled Banner” but I am 99.99% betting on no. When AS lobbies Congress for more federal funds for autism research they most certainly do not say, “we can never know if the increase is real.” Dr. Newschaffer is one of a handful of scientists who have the final say in millions of dollars of AS grant selections. His uncertainty over whether a 1,000% increase in ASD is real astounds me.
After that I listened to a bizarre litany of advice from non autism experts. They called for (wait for it…) more genetic research, more genetic databanks, and more research into diagnostic substitution. Dr. Diane Schendel offered both bizarre and offensive advice. She argued again for more databanks. For Pete’s sake, has anyone heard of AGRE, Simons, CHARGE, IAN or the National Children’s Health Study? We are already up to our necks in databanks!
Dr Schendel then encouraged the group to examine 20 yr old Canadian data for clues. Why and who cares? Schendel spoke about the long and sordid history of “fake epidemics.” Schendel stated there was a fake epidemic of anorexia in the 1990s traced to the unrealistic image of women as portrayed by “Playboy” magazine. Then further research found that “Playboy” magazine was not responsible after all. Ah-ha- a fake epidemic! I mean what are we even talking about here? Dr. Rice and Dr. Boyle can you seriously tell me that these insights are more valuable that that of a stakeholder representing 10,000 families?
Then things got even weirder. Some panelist, who forgot to announce her name before speaking, said that she was sure autism was more genetic than not because in her experience she has noticed “strange personality characteristics” throughout ASD families. Another researcher argued that autism diagnostic tests were culturally biased and her experience with Native Americans proved that to her.
By this point I felt more pessimistic about the state of autism research than I have in years.
Fortunately things did get better. A non-panelist, I believe it was the CDC program manager, suggested keeping track of gaps in under-researched epidemiology issues. Truly a great idea! The program manager said, for example there have been so very many parental age studies, isn’t there another area of epidemiology research that needs our attention? Thank you for pointing that out.
After hearing the final wrap-up of all 4 research groups I was pleased to hear some very good ideas for the other 3 groups. These open-minded and innovation-friendly researchers proposed many interesting projects and welcomed greater and more representative stakeholder participation. If only we could separate the wheat from the chaff and move forward!
Katie Wright is Contributing Editor to Age of Autism.