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Advocacy in Action

Guest blogger: Doug Compton is a parent advocate and a scientist

Today I attended the first day of the 9th annual International Meeting for Autism Research, after a five year hiatus. Today, we are over 1,600 strong in attendance, and the emotional feeling as a parent of a 17 year-old autistic teenager is overwhelming. The feeling as a scientist is less emotional, but equally overwhelming. The science is extensive and top notch.  I attend scientific meetings regularly for my career, but not usually with a tear in my eye and big smile on my face.

This meeting is a tribute to all advocates, to every person who loves a person with autism and who speaks on their behalf. The advocates started this meeting, because they knew they needed the world’s scientists, doctors, and therapists to come together to make progress for our loved ones.  Soon after Cure Autism Now, and the National Alliance for Autism Research, and the Mind Institute became established, the three groups put aside their differences to come together to plant a common seed. It wasn’t easy to pull off in such a short time, but within a year of our first conference call, we all walked into a dream come true. My personal thanks to Portia, Eric, and David. So many others were involved, but without their commitment, we wouldn’t be here today.

At the first IMFAR meeting, nearly everyone either knew each other or recognized each other. We all breathed a sigh of relief that IMFAR was born, and hope that it would grow and flourish.

Ten years later, it has more than flourished. I recognize many familiar faces, but new scientists outnumber the groundbreakers, those who stuck to autism research when there was little interest, and little funding. My new friend Daniel made a strong statement about the success and importance of this meeting to the autism research community: after a year of global economic stress, the attendance this year has grown from last year. This group is growing and committed. The spectrum of attendees is as diverse as autism. From students to retired professors and doctors, from private industry to government scientists, from brain imaging scientists to geneticists to animal modelers to epidemiologists to therapists and teachers, all trying to push the science envelope to develop new approaches to improve the lives of all people with ASD. And they have come from all over the world.

During the breaks, there is enthusiasm in room and hallway conversation that is contagious. Scientists seeking out others, often from a completely different field, knowing that everyone gains when knowledge is shared. Ideas and collaborations pop up, introductions are made. Hopefully, new lifelong research partners are meeting each other for the first time because of this meeting. I try to introduce as many new faces to people I know that may be able to feed off of each other’s expertise.

As a parent, this energy is inspirational and brings a new spark of hope to a worn out advocate and scientist whose emotional side as a father is impatient. Everywhere here there is momentum and progress being made. And the message I keep hearing, over and over from speakers, is that they have an obligation to U.S.: To the families, to those affected. We ended the day by honoring Dr. Edward Ritvo with a Lifetime Achievement award. The last thing he said after an inspirational talk, was that “It is your responsibility to help families”. The crowd responded with a standing ovation, then joined together to talk more autism in a social setting where the conversations were energetic, loud, and constant. IMFAR is a good example that advocacy works. Speak up today for autism, you never know what might come of it.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

Categories: Science, Uncategorized Tags: ,
  1. Danial 'mith
    June 26, 2010 at 12:19 am

    Yeah I rekond itz hi-about tyme 4 de so called “normal”people 2 like SHUT DE FUG UP & LISTEN!Especially all thoze stuckup,stuffy,pompous assnine mental health “proz” who really like 2 give off de impression that just becauze they had obtain thier psych-degree in like 1 of de most prestigious in de great psych skoolz like harvard yale & even notre dame! They claim that they know all ther iz about me just by reading my chart & just proclaiming az being nuttin’more than a paranoid schizoid & being quite HAUGHTY ABOUT IT AS WELL without even want 2 discuss de posibly what put in that chart may not be all that accurate & thus thar4 couldn’t reflect de true nature of my original & perhapz current condition which iz azpergersyndrome that my “psych coach” at that MH clinic that I go there in “lozechester” ky that he had dianosed az having that sort of “mental defect” that I could’ve quite like had since birth perhapz.I’m a MAD now.[mid-aged dude]

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