Some of these patients took comfort in knowing there's a name for the problems they'd been having, a community of others who share those difficulties and counseling resources available, Speer said.
Autism as an identity
Reflecting on his life, Sheppard noted that it may seem to an outsider as though he suddenly emerged from obscurity since his diagnosis. And in a way, he did -- after finding an identity as a person with autism, he suddenly had a mission and purpose.
One issue of identity that troubles him and others in the autism community involves a proposed change in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, the essential guidebook for mental health professionals.
The DSM-5, to be published in May 2013, will no longer include a separate diagnosis ofAsperger's syndrome, which is basically high-functioning autism without any childhood delay in cognitive or language development.
Many experts, including Speer, say the majority of people who meet current autism spectrum disorder criteria would still qualify for services under the revised definition.
But Sheppard remains concerned that the changes will become an excuse to limit diagnoses and support for individuals with high-functioning autism, as well as those who aren't able to correctly describe their autism-related behaviors. He supports the conclusions that science backs up but also recognizes that a deeper identity issue is at play when it comes to autism.
"Autism identity is something different than the condition," he said. "Just like gender is not the same as biological sex. And, so, if someone ... is identified through Asperger's, then I think that if it's important to them it should be recognized."
For instance, his friend Philip, who attends Sheppard's writing group, identifies as having Asperger's syndrome specifically, while Sheppard does not. But Philip recognizes that he and Sheppard, while having individual strengths and weaknesses, are in similar places on the autism spectrum. And they share a passion for helping others with autism.
"His goals with helping autistic individuals transition from high school to university, or from university to the work force, that's what really matters to me," Philip said.
Toward a better future for people with autism
Sheppard has big dreams, but the reality is there are plenty of people with more severe autism who won't get to university. It's a big issue as to what happens when they are no longer legally eligible for educational services in the United States -- it's generally age 22, but varies by state.
Some go to a workshop setting where they get paid minimally to do work, said Dr. Max Wiznitzer, a pediatric neurologist and autism expert at Rainbow Babies & Children's Hospital in Cleveland. Others find appropriate part-time work such as cleaning, shelf-stocking and grocery-bagging. Sometimes, it's glorified daycare.
Some sit at home because there aren't any real opportunities in their community, or their parents are concerned someone will abuse or take advantage of them.
"The idea is to make sure that they don't have to sit in front of a TV all day," Wiznitzer said. "But it is an issue in terms of making sure that they have some opportunities for gainful employment at their developmental levels."
In Canada, where Sheppard lives, the availability of government-funded services and programs for autism varies widely according to province, and sometimes there are significant waiting lists. Such resources are even more limited for older children and adults, according to Autism Speaks Canada.
As a person with autism himself, Sheppard approaches low-functioning individuals as "valued elders" -- they are wise but need to be cared for and are not expected to go full speed through life, he said. In his vision of helping these people, Sheppard doesn't want to change people with autism, but rather provide better support for them, and allow them to thrive.
"He brings out the best in the people," Philip said. "He makes them feel like a winner."
Such optimism is greatly needed as autism gets diagnosed ever more frequently. Many parents struggle financially and emotionally to support their children on the autism spectrum, hoping they grow up to live independently and have meaningful careers -- but it doesn't always happen.
In the face of stigma, bureaucracy and ignorance, the community needs a guide to help people see the good in themselves and reach their own potentials -- in a word, a shepherd.
™ & © 2012 Cable News Network, Inc., a Time Warner Company. All rights reserved.