Part 1 of this 2 part series examines the role of the parents’ lobby in securing funding and raising awareness for autism.
Even in a time of tight budgets, governments are opening their wallets for autism, a disorder with a wide range of developmental disabilities. The National Institutes of Health projects that funding for autism research will rise by $19 million, to $141 million for the next fiscal year. Several autism centers have opened or their doors in our region. Experts say this momentum stems from the effective advocacy of families affected by autism.
Listen to part 1 of the 2-part series: [audio:090722msautism1.mp3]
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Teams with names like “All for Aaron” and “Kicks for Nick” cheered each other on as they circled through a large corporate parking lot during the recent Southern New Jersey Autism Walk. Hundreds of families came out to raise awareness of the developmental disorder which affects about 1 in 150 people. Bob and Dawn Mancuso walked with their two sons who are on the autism spectrum. For Dawn it was her fourth time at an event she says offers a real payoff:
Dawn Mancuso: In the last four years we have seen incredible growth as far as awareness itself, and now it’s where it used to be so odd to know someone with autism, now it’s rare if you don’t know someone with autism.
But Bob Mancuso says figuring out and securing services for his sons is still tough:
Bob Mancuso: That’s always a big challenge nobody comes out and tells you what’s available, people will, if you bring it up, they will provide you the services, if you don’t bring it up, you don’t get the services
Linda Meyer: I say it’s like getting a masters in special education in three weeks.
Linda Meyer heads Autism New Jersey – a non-profit organization that offers resources for parents:
Meyer: They have to learn everything they can about autism spectrum disorders, about the possible services who to connect with in the community, and most often, that’s parents helping other parents.
Parents helping parents turned into a movement that has propelled autism from virtual obscurity two decades ago into the national spotlight. So much so that it became a stand-out issue during the 2008 presidential campaign. Many experts agree that the movement made monumental gains when Suzanne and Bob Wright entered the picture in 2004. They founded “Autism Speaks” after their grandson was diagnosed with the disorder. At the time, Bob was still chairman of NBC Universal, and Suzanne says his connections helped:
Wright: You know, I just used his Rolodex and asked as many people as I could, because our background provided the foundation for what we were going to have to do.
Bob Kreider heads the Devereux Foundation which provides services for people with developmental disabilities. He says the great success of Autism Speaks is causing a bit of anxiety among his colleagues:
Kreider: Many other folks in the disabilities community and mental health worry a little bit that autism will take more of a share and crowd out some other important work. having said that we all have a tremendous amount of respect for the attention they have brought and the new money they have brought into the disabilities arena.
But the autism community has seen its share of discord, too.
Arguments over the increase in diagnosis over the last two decades have caused friction among parents and scientists, and different advocacy groups. Scientists say the increase is mostly due to improved diagnostic tools, but they disagree over what other factors are contributing to the rise in autism. Among parents, there is a lot of speculation about the causes.
Dr. Michelle Rowe heads the new Kinney Center for Autism Education and support at St. Joseph’s University:
Rowe: That’s where the controversy lies, and if you pull up the list of things of the culprits, it’s huge, I mean there is even speculation about watching too much TV, vaccines, things like cleaning fluids, there is just a huge list and it makes parents’ heads spin.
Rowe says especially vaccines are a hot-button issue:
Rowe: When you look at articles every day, people are being called morons and idiots and various other things for their opinions about this, it becomes a battleground for who is right about this. And the important thing is that we all work together on this, we have a lot to offer each other.
Autism Speaks has committed $128 million in new research funding. This, in addition to federal and state funding, might bring scientists closer to finding the causes – and treatments – for autism.