As Autism Awareness Month Begins, What’s Up with Autism Speaks?

Autism Speaks, the nation’s largest autism-related non-profit, is a magnet for extremes of emotion: love, hate, frustration, jealousy, the whole gamut.

Over the past five years, Autism Speaks reached out and incorporated several well-established autism non-profits (NAAR and CAN).  The founders, Bob and Suzanne Wright, had a much-publicized blowout with their daughter, Katie, over the likely cause of Katie’s son’s autism.  The Executive Director, Alison Singer, walked out over a disagreement regarding research into vaccines and autism, and founded her own competing non-profit.   Ad campaigns and videos produced by Autism Speaks have elicited both delight and horror from members of the autism community.

Whatever your feelings about Autism Speaks, there is no doubt that it has become the 500-pound gorilla of autism awareness, running major grant and research programs, massive ad campaigns, and star-studded fundraisers.  Autism Speaks is also highly political in all senses of the word.  Its founders, Bob and Suzanne Wright, attend United Nations events, and its staff are active in policy strategy on the state and national level. Bob, the ex-director of NBC, has friends in high places – and for years has been the force behind celebrity happenings featuring major stars like Jerry Seinfeld and Jay Leno.

Today, Bob and Suzanne Wright were making a whirlwind tour of New York, starting at the Stock Exchange to ring the opening bell and then proceeding on to flip a switch that would light the Empire State Building blue in honor of Autism  Speaks’ very own “Light it up Blue” awareness campaign.  Between gigs, I got an opportunity to chat briefly with Bob; given such a short window of opportunity, I asked just two major questions.

Lisa : What programs, funding, opportunities and/or resources will Autism Speaks be developing to support the growing number of teens and young adults with autism as they move toward higher education, employment and independent living?

Bob:

We have largely focused on younger children and families, as we knew we couldn’t take on the entire spectrum.  We are now trying our best to affiliate with groups that are dealing especially with the crossover from minor to adult (ages about 19 to 21).   This is a critical transition because at age 17 or 19, you lose your benefits if they’re state supported.   Then, just a few years later, you go from losing some benefits to losing all benefits!

We have created a few resources; we have an online transition roadmap, and over 6000 packages have been downloaded.  We also offer family service grants, and many of these are going to organizations that serve young adults or adults.  We would like our level of ability to support that to continue; we do about 100 such grants a year.  If we can put more funds we raise into that category it’d be helpful.

We’re also running events to bring people together to discuss the issue.  There’s a huge gap in our national social system to help us deal with transition for adults with autism.   The gap is so wide, no single group can bridge it. We need to get that community together – perhaps to get medicare more involved; crystallize a program that can eventually be brought to states or congress.  We formed a housing committee including experienced real estate people. We’re looking for a model program to take around the country to finance the cost of housing and care for adults with autism.

We will pull together expertise from difference areas – finance, real estate planning – and we’re finding people willing to take part in efforts to put together a broader plan.  Essentially we’re trying to facilitate the proceess by setting up meetings all around the country; we’re not going to take over this effort, but we have a lot of expertise, a lot of people we can call on in lobbying and government.   We also know that the people who are involved with our fundraising walks have many skills, and many organizations they’re connected to.   We’ve also been working with autistic self-advocates: Michael John Carley and GRASP are very connected to this project.

Lisa: You founded Autism Speaks, at least in part, to help your grandson Christian.  How is Christian doing?

Bob:

Christian has a great number of difficulties.  He’ll be ten in August; he is more stable, but he still has serious attention and communication problems that prevent him from learning.  He can’t hold onto images or words.  I don’t have to be reminded of our mission when I see Christian – even with all the care he has, it’s been terribly frustrating.

Perhaps readers will be comforted, and perhaps they’ll be dismayed, to learn that even the Wrights – with all their money, influence, knowledge and access – have not found a “magic bullet” to treat their grandson.  Certainly, though, it is good to hear that Autism Speaks is facilitating collaboration among many different organizations and professionals to address the vast and soon-to-be-overwhelming issues faced by adults with autism.  I hope to learn more about how this effort is progressing; meanwhile, your comments are welcomed.







As Autism Awareness Month Begins, What’s Up with Autism Speaks? originally appeared on About.com Autism on Friday, April 1st, 2011 at 16:38:25.

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