Making a connection

As the mother of twin boys with autism and director of the Chico State Autism Clinic, Josie Blagrave has grown accustomed to steeling herself for a situation she anticipates will be nerve-wracking. Even so, she couldn’t contain the butterflies when she got a chance to call John Elder Robison.

His might not be a household name, apart from households in which a member is autistic, but Robison has international prominence. He’s an author, public speaker and member of the Interagency Autism Coordinating Committee, serving a third U.S. health secretary and second president. He also has a diagnosis on the spectrum: Asperger’s syndrome.

Blagrave heard Robison address professional conferences and knew he’d visited the MIND Institute at UC Davis last fall—coincidentally, around the time she and Heather Quilici from Chico State’s Department of Regional and Continuing Education had put him on the “wish list” for a symposium they were planning here.

So, Blagrave reached out: first by email, then telephone.

“I completely fan-girled when I got on the phone with him; it was ridiculous,” she told the CN&R last Monday (Sept. 11), relaxed in her office. “It was like, ‘Play it cool, play it cool … Oh my God, it’s John!’

“He’s not as well known in this area as Temple Grandin [who spoke at Chico State in 2012], but in the world of research he’s really well known. After hearing him speak, it was like, he has to come to Chico; I don’t care what we have to do to get him.”

Turns out, all she had to do was ask.

Robison will deliver the keynote address at the inaugural Northern California Autism Symposium, on campus next Friday and Saturday (Sept. 29-30—see box). He’s making a special trip—flying to and from his Massachusetts home just for the event.

“Why would I go to Chico? I would go anywhere to deliver [my] message where there are autistic people and families ready to hear it,” he said in a phone interview. “And I’ve never been to Chico before, so it’s important for me to go to new places and not the same places I’ve always been.”

What’s his message? Put simply, Robison explains—and demonstrates, by example—how aspects of autism that seem like obstacles actually can be assets. Moreover, he advocates coming together to aid others on the spectrum and champion the cause.

Under the pen name Augusten Burroughs, his brother Christopher relayed some of their family history in the book Running With Scissors. Robison grew up in the late 1950s and ’60s as a sad, solitary child uprooted every few years in moves prompted by his father, a minister turned professor.

Robison dropped out of high school in 10th grade and wound up designing special-effects guitars for KISS. He segued into the engineering profession on the corporate level but found he didn’t fit into the structure. He quit and started an auto service business.

A client, who happened to be a therapist, became a friend; his introduction to Asperger’s proved transformative.

“I’m like a preacher who found God and then life,” Robison said. “At first I realized that autism was this thing that caused a lot of pain and suffering for me through my childhood—and that’s real, that’s one side of autism—but autism is also this thing that made me exceptional.

“It was because I was autistic that I saw the world differently. I was able to be an engineer for rock ’n’ roll bands; it was my different way of seeing that makes me successful making custom cars today….

“So many young people have only seen the failure side of autism; they’ve only seen what they can’t do. To see an older person who says, ‘Hey, I’m autistic and I’ve done a lot of cool stuff—you’re going to grow up and do those things, too,’ that’s a really important message that young people need to hear.”

Blagrave agrees. That’s precisely why she asked Robison to come. She said three other presenters also have autism spectrum disorders, though she declined to identify them because they have not gone public—at least yet.

“I think it’s important to start listening to the people with the actual disability and not just talking about them and around them,” she said. “I wanted them included in that dialogue.”

Robison shares this goal of connectivity. Right after his talk, he will meet attendees at an open reception. He’s also scheduled to present a seminar the next morning.

“If you ask, ‘What’s the greatest thing I can do to help autistic people?’—whether that’s [your] autistic child or autistic client in the clinic or autistic students in class—the answer would be, ‘Build a community where we’re a welcome part of it,’” Robison said. “Every one of the people who’s going to be at this conference can become instrumental in building community for autistic people around Chico, California.”

Blagrave, too, expressed hope that the conference will serve as a catalyst for developing cohesion among families and professionals. Symposium organizers designed the programming around the needs of parents and teachers in particular, though she said therapists without expertise in autism spectrum disorders could glean worthwhile overview information.

The event idea has percolated for a decade. Grandin’s appearance for three lectures five years ago intensified interest around campus; last year, Quilici’s department joined with Blagrave’s—kinesiology, in which she’s an assistant professor—to make the concept a reality.

Blagrave has focused on autism professionally since 2001. The condition became personal four years ago, when she and her wife welcomed their sons, now 9-year-olds, into their home. Their adoption became permanent two years ago.

“Hands full, but hearts full, too, so it’s good,” she said.

Like Robison, Blagrave sees community as a goal for the symposium.

“This is bringing all the players to the table, and if we could just get everybody talking and collaborating, that would be key,” she said. “If at the end of the conference everybody stays around and talks for four more hours …”