By Katie Wright
I know you are thinking one of things is not like other…but I was actually glad to have to have IMFAR and experienced it for myself.
For years, possibly decades, parents have complained that IMFAR was an esoteric brain and gene conference peripherally associated autism…400 presentations on eye gazing, 200 social gazing, 100 on an infant’s grasp of eye gazing, genes, brain and genes, brain, genes and brain. Despite IMFAR’s proclamations of “exciting breakthroughs” few families felt any excitement and fewer children saw any benefit.
There is nothing in sight to stem the rising tide of ASD cases. Even worse, a greater number of autistic children are suffering from serious medical problems, which have gone both unstudied and untreated.
Parents were pleased by the recent change in IMFAR’s leadership. After David Amaral was elected president many parents contacted him and expressed their frustration that their childrens’ painful and disabling medical needs had by ignored by IMFAR for too long. Imagine a breast cancer research organization spending all their time and money on genetic research and a treatment intervention that succeeded 25% of the time. I’m guessing that other 75% of women would be demonstrably unhappy- especially if they are doing the fundraising.
Dr. Amaral was very receptive to our concerns . Autism Speaks contacted Amaral as well, proposing an Autism Treatment Network presentation on the importance of recognizing and treating medical problems and sleep disorders. Sleep disorders may not sound like an urgent problem to some but there is a reason sleep deprivation is used as an interrogation tool at Guantanamo Bay. Think about how much sleep you got when you brought your newborn home and imagine living like that for years or decades. The ATN presentations went really well, I only wish the room had been packed. Scientists and researchers need to start understanding the complexity of autism and stop studying it as only a heritable psychiatric disorder.}
Next year I hope Autism Speaks offers at least a hundred scholarships and encourages all local families to attend IMFAR. Right now the conference is too expensive for parents and if AS is sponsoring the conference they should also be offering families reduced prices. When a lecture ends at a DAN! Conference it is a free for all to the microphone. One hears the sounds of chairs being overturned, feet getting accidentally stepped on, bustling pads of papers filled with questions being extricated from folders and so on. After a sometimes exhaustive Q & A period the lecturer is inevitably followed out of the room by a dozen people wanting more information. I always thought that is how it should be! People are incredibly engaged and have many questions to ask. There is no sparing of feelings and that is OK, believe me these parents and presenters are tough, they can dish it out and take it as well.
When a lecture ended at IMFAR only a couple of people walked to the microphone. The questions were gentle and complimentary. So try to imagine what happened when Lyn Redwood and I took to the mic after the Susan Hyman presentation to ask some not so gentle and not complimentary questions. More on that later.
I hope to see IMFAR continuing on this path of change and welcoming even more clinical presentations next year. A few dozen environmental lectures would also be great. More importantly IMFAR scientists need to hear from the community of families. So fair warning, I would advise academics to toughen up as families bring their special brand of challenging, informed and probing commentary to IMFAR next year.
Katie Wright is a Contributing Editor for Age of Autism.