By Katie Wright
When the IACC committee members were choosing outside scientists and parents to help inform their research plan, one would think they would reach out to different thinkers with diverse areas of expertise. Why create yet another sub-committee if IACC is only going to pack it with clones? How will such an endeavor expose IACC members to innovative points of view or under-represented research opportunities? It won’t, but maybe that was the point!
Lyn Redwood and Lee Grossman nominated Dr. Bryan Jepson for the “What is causing autism committee.” Dr. Jepson is a father of 2 boys on the spectrum, published researcher, author and full time clinician at Thought House, a clinic treating ASD kids with medical problems. Fairly perfect credentials, right? But no…Team PreHistory, Insel, Landis, Singer, etc. all rejected this father and physician in favor of Dr. Matt State and Dr. Lars Perner, I suppose because genetics is such an under-represented area of autism research. Team Insel did not want to include a DAN! physician who actually treats autistic children everyday. No, Team PreHistory had to have Matt State and Lars Perner.
Neither Sell nor Perner bothered to take part in yesterday’s conference call. Well to be fair, Perner joined the call in the final 15 minutes and said nothing.
It seems to me, and I am sure many other families, that if you nominate someone to serve on this very important committee, that they actually a) want to do it and b) are committed to showing up. Bryan Jepson would have made this a priority and would have been an active participant and contributor to this committee. Listen, we are ALL busy and our families don’t want to hear excuses.
Story Landis could have seriously used the help of Bryan Jepson. Landis was the panel chair and was almost instantly lost amongst procedural points, current autism research content and the purpose of the committee. Landis may be a great steam cell scientist, I don’t know. But I do know Landis seemed frequently confused, exhibited little knowledge of both autism, as a disease and the current research literature. She was a very poor choice.
When the panel was discussing filling in gaps in the research there was tremendous confusion, confusion that went on for 20 minutes. I know, why? Every parent knows what the gaps are. Somehow Landis detoured into a discussion of Fragile X and Retts. This is probably the ONE area of autism research that has been wildly over-represented in terms of both money spent and number of ongoing studies. Then someone (very frustrating because people did not say their names prior to speaking, as they had been asked) said what about regressive autism? Bingo! Thank you to whoever said that. Then another panel member said something about there now a lot of studies on regressive autism. In what universe? Landis responded that she would put regressive autism on the plan temporarily but then she might remove it because IACC could discover this area is already well researched and drop it as a priority. What?
OK, how far under a rock do you need to live to know that regressive autism is a sorely neglected area of autism research. Sure, not every scientist would know this but the chairman of an IACC subcommittee? Aren’t the gaps in autism research obvious? If you don’t have Fragile X, Retts, aspergers or HFA, mainstream researchers are not that interested in your problems and the other 80% of the autism population. Autism research has been conducted like an AIDS committee who focused all their research endeavors on how hemophiliacs’ contract AIDS while ignoring the gay community.
Thanks to Lee Grossman and Jeff Sell for supporting the vax/unvax proposal. There was a very funny exchange when Lee said that the public overwhelmingly wanted this study done. Landis jumped in and said, “No, no, no. not 100%...there were one or two responses that said no vaccines, more genetics.” OK, Landis, 95%. Quit splitting hairs and wasting our time. This is the kind of bureaucratic, biased leadership that caused IACC to take 2 YEARS to make a strategic plan, when it should have taken two months. Landis suggested more baby sibs research. For God sake’s enough of that. Unless we are doing a vax/ unvax sibs study, no more baby sibs research, ever, enough. And please no more crowding into the National Children’s Study either! That project is already a cumbersome monster studying 1,000 issues, if we add more specific vaccine components we will NEVER be able to separate out the findings. We need independent vaccine research safety studies, not more NIH/CDC projects. Haven’t we been down that road 100 times already? Isn’t it time for innovative scientists, with no conflicts of interests, to have an opportunity at vaccine research. That is what the public wants.
Landis and Craig Newshaffer (AS) sadly, argued that it is premature to study the vaccine schedule. It was premature 20 years ago, now it is imperative! This was hardly a surprise from Landis, but extremely disappointing to hear from Newschaffer. I know he has an affected child and am shocked that Craig fails to see the urgency of this issue. Yes, Craig’s research has disputed the hypothesis that multiple vaccines are a possible trigger, his child did not regress but surely he must see how many children have? Craig argued that such a study would get lost in politics and that we should stick with other research for now. Big, big mistake. It took IACC 2 years to make a plan; it will probably be another 2 years to fund research, maybe another 2 years after that to form a new IACC and so on. In that time autism will be affecting 1 in 50 kids! This idea that we have all the time in the world and can’t study the vaccine issue now because some people can’t handle it astounds me. This failing of our families was a shame because Craig, unlike other panel members, was actually well prepared for the meeting and contributed many good ideas and insights.
Jeff and Lee initiated a harmless discussion about why sibs are more likely to be a risk for autism and why it might be important to identify why an adverse vaccine response could put them at additional risk for autism. Landis immediately jumped on them to say that being unvaccinated could be placing siblings at risk for autism. What? Landis, the purpose of these panels was to get OTHER points of view, not for the IACC members to take up time re-iterating their long-standing, bizarre, unscientific and embarrassing biases. However, Robin Hansen rivaled Landis in the wacko theories department. When Lee asked about studying a modified schedule for kids with immune problems, Hansen argued that “dragging out the schedule” was dangerous. Right, giving the MMR at 18 months rather than 12 would be a huge catastrophe. Hansen argued that it is far better to risk over-burdening a fragile toddler’s immune systems for nearly extinct diseases like rubella and mumps than to “drag it out” playing it safe. I don’t even know what to say about that, her reasoning speaks for itself.
Alison Singer moderated “How Can We Understand What is Happening” committee and it was just as bad. First there was a 25 minute conversation on what “nonverbal” means. I’m totally serious. Someone actually said that maybe some autistic kids don’t speak “because they don’t want to communicate.” So frustrating.
When I think of “what is happening” in regards to autism I think, “Why do so many kids lose all their speech? Why do they develop rashes all over their bodies? Why did my son have febrile seizures after receiving 7 vaccines? What is in those vaccines? Why do many toddlers suddenly develop horrific GI disease while regressing?” How did my son go from ‘I love you Mommy’, to a few months later no longer recognizing me? It took almost the entire 2 hour session in order to bring up the word “regression.” Then Manny Bloom said he was suddenly interested in the unusual amount of ASD parents with autoimmune disease. Wow, newsflash! I suppose it will be another 10 years before this team gets around to noticing GI disorders.
Thanks to David Amaral for repeatedly referring to the autism community’s feedback. Amaral was the only panel member interested in this topic. Amaral said that the panel should be responsive to the very strong and very clear message the public was sending in terms of demanding more environmental research. Silence. Then the discussion deteriorated into “why the public doesn’t get it!” Right, that is the problem. I have a radical idea. Rather than going down the “families are wrong, we know better route,” why not actually include a parent with that point of view on the panel! It is called diversity, Insel, try it sometime. Instead all panelists were in a massive groupthink mode, convincing themselves that the public’s frustration with IACC’s refusal to fund vaccine or adjuvant research is merely the result of bad PR and faulty public perception. Naturally, Team PreHistory’s hand chosen parent participants had ZERO to say on this subject. I think that was the most disappointing moment of all.
Why didn’t the panel open up to callers? Why didn’t the panel want to hear from parents with scientific knowledge? Lyn and Lee recommended long time pioneering parent advocates with extensive environmental science experience, parents who lead non profit research and service orgs: Laura and Scott Bono, Peter Bell, Theresa Wrangham, Wendy Fournier, Lisa Ackerman, Mark Blaxill and Sallie Bernard. Many of these parents have published scientific research, all fund autism research and all have children with complicated forms of regressive or environmentally triggered autism. But no, TeamPreHistory only wanted semi- mute parents who would not challenge them.
I wanted to listen to more IACC sessions, but honestly, after these two I thought what’s the point? Please continue to send IACC feedback about the kind of job you think they are doing.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.