Talk about diversity! In a support group of two dozen people, one 23-year-old man sat and "stimmed"--occasionally flailing his hands up and down, jerking his head back, or making a grunting sound. So though he was verbal, one wondered how much of the conversations of the structured group he was taking in. And next to him, sitting in paradoxical calm, was a married 43-year-old woman who practices law and has three children.
How could these two opposite people possibly attend the same support group? Answer: They're not opposite. Both are diagnosed somewhere along the autism spectrum.
"The autism spectrum IS pretty vast," says GRASP executive director, Michael John Carley. "It really offends our human need to compartmentalize if Albert Einstein, and a completely non-verbal individual could possibly have the same condition, albeit in different amounts. But the spectrum is simply more complicated than a lot of us want it to be."
I asked about the disparity between the two, and what the parents of the younger man might see as a benefit for their son attending a GRASP support group..
"Worst-case scenario," Carley states, "is that he's getting 10% of what's being discussed by the group. But that 10% is information he wouldn't have gained had he not come."
What is GRASP?
GRASP, the Global and Regional Asperger Syndrome Partnership, is a large membership organization composed of adults diagnosed with autism and Asperger's Syndrome (AS). Running like any other national chapter organization, it has 25 regional support groups scattered about the U.S. and Canada, all run by people who themselves are diagnosed on the spectrum.
Though not a parent-run initiative, parents of attendees are thrilled. As more and more children on the spectrum have obtained more appropriate education over the years, their abilities to obtain post-secondary degrees or enter the workforce have gone through the roof. But adult support is very hard to find. GRASP provides their grown but still struggling children a place to go and share the challenges with each other.
Kim Finnegan, of Melville, NY, who has an adult child who attends these groups, says: "(My son) has walked away with phone numbers, and party invitations, and friends... It has been an immeasurable help to my son and I am so thankful for it!"
Erica Payne's, whose son has attended the same Long Island, NY group, observes: "Rob has gone from a quiet and withdrawn child, to a fine, outgoing, and self-confident college student because of GRASP's programs."
Carley cautions that not everybody thrives in these groups, but that all but a very few get something out of it.
"Peer-run support," as Carley explains, is an approach that has worked for breast cancer survivors, returning war veterans--pretty much everyone who has ever felt outside the majority. But perhaps because autism is so much about communication, the idea of spectrum adults replicating this concept for themselves may have been thought impossible... prior to GRASP. Carley adds: "If a participant knows the person running the show has similar experiences, they're going to be willing to share a lot more. Trust is huge for a spectrum adult because you've probably gone your whole life with people misunderstanding you."
GRASP was founded in 2003 as a response to two factors that Carley said were desperately needed in the autism/AS world: (1) an organization that was truly run by the individuals themselves, and (2) one that focused on adults.
"Back then, everything was about kids. Kids were cuter, their pictures raised more money, and at the time adults felt more disposable. We were all intimidated by the life experiences that spectrum adults have, and one of the things I'm proudest of is that since then, we've led the way in inspiring other autism organizations to focus more on the needs of adults.
And on the peer-run concept Carley says: "If we were really going to show the potential of spectrum adults, then we were going to have to move beyond the token spectrum Board member, or the noble yet bankrupt organization. …