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Posted at 02:55 PM ET, 11/30/2012

Adults with autism tell Congress more funds needed for services

The House Committee on Oversight and Government Reform heard testimony on Thursday from experts and advocacy groups about autism research and services.

For more than two hours, members of the committee asked Alan Guttmacher, the director of the Institute of Child Health and Human Development at the National Institutes of Health, and Colleen Boyle of the Centers for Disease Control and Prevention about research, possible causes and treatments. Much of the conversation focused on the controversy over vaccines and autism.

The second panel included leaders from Autism Speaks, the Autism Society, SafeMinds, and the Asperger Initiative at Mercyhurst University in Pennsylvania.

After hours of questions and testimony about what a burden autism is for families and society, two adults with autism, Ari Ne’eman and Michael John Carley, spoke. Their testimony was moving and telling; they talked passionately about the need for services for adults with autism.

Ne’eman is president and co-founder of the Autistic Self-Advocacy Network and a member of the the National Council on Disability. He told the committee that he would like to see more of the federal money that’s allocated for autism go to funding communication devices for people with autism.

Ne’eman told the committee about an encounter with a non-speaking man with autism who was trying to find a job. Ne’eman said the man communicated with him through gestures, and obviously had plenty to say.

“If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today,” Ne’eman told the committee.

Carley, the executive director of the Global and Regional Asperger Syndrome Partnership, also spoke on behalf of adults with autism, reminding the committee that research is important, but it isn’t helping people with autism with their immediate needs.

“Today, the amount of services we collectively provide is like one page out of ‘War and Peace’ when compared with what’s needed,” Carley said. “The average working family with a child with autism is overwhelmed, as are the average adults on the spectrum. The majority of families still do not have the appropriate services, or educations available to their children, and adults on the spectrum are starved for appropriate housing and employment opportunities.”

It was refreshing — after hearing committee members and others describe autism as a crisis, a tragedy and, in one case, a “pit” that a child descended into — to see these two men try to steer the conversation toward the desperate need to support adults with autism so they can work and lead fulfilling lives.

“We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them,” Carley said. “And as every one of us grows, spectrum or not, we need to hear about what we can do, not just what we can’t.”

Autism is not a terminal illness, and it’s not a tragedy. It’s a difference. Instead of wringing our hands over why our children are different (but, as Temple Grandin says, not less), maybe it’s time to ask them about their dreams, and how we can help them overcome the challenges that stand in the way of achieving them.

To read my tweets from the #autismhearing, follow me at @marijanewilliam.

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By  |  02:55 PM ET, 11/30/2012

Tags:  autism

 
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