Making the Grade

Ryan Rose was a good baby.

Too good, his parents say.

He ate well. He never cried. He was content to spend the day in his playpen.

But, he also never wanted to be held. He shrunk from kisses and gentle touches. When his parents, Harvey and Peggy, once placed him on their bed and bounced, hoping for a giggle or smile, they were met with screams of terror.

Now, at 21, Ryan Rose is an autistic adult. He wasn’t diagnosed as such until he was 9, and didn’t know it himself until he was a high school sophomore.

He is also a high school graduate--the first autistic graduate of a mainstream program at Simi Valley’s Royal High School, according to his parents--and now a college student at Cal Poly Pomona, where he studies animal science, riding and training horses.

It’s been a constant struggle, as Rose battled his tendency to frustration, his fear of social contact, his need for frequent help, to reach the point now at which a college diploma is on the horizon. He leaves his family’s Thousand Oaks home Monday for the National Leadership Conference for Youth with Disabilities in Washington, D.C., invited as a California delegate to attend along with 125 other disabled young adults nationwide. He will hobnob with senators, attend policy meetings and work on ways he can be a leader back at home.

*

Rose does not look any different from others, but he acknowledges there is something odd about him. He functions well, can crack jokes and bickers with his younger brother, but he speaks with a strange, precise cadence.

Before the early 1970s and an increased understanding of the various degrees of autism, he might just have been considered eccentric, someone who didn’t quite fit in. He is certainly not like the classic images of autistic people, moaning and rocking back and forth in a corner, or like Dustin Hoffman’s “Rainman” character, instantly counting a mess of dropped toothpicks or muttering endlessly to himself.

*

And though, as Rose said, “ ‘Rainman’ was at the low end, I’m at the high, high, high” end, he does sometimes find himself repeating words, phrases and actions. He is compulsive about visiting the horses he helps train at Cal Poly’s stables. He has to force himself to hug his mother after a visit. He memorizes street directions, and knows every “plane, every airline, manufacturer, schedule and rivet” at LAX, his dad said. In an hourlong conversation in his family’s living room, Rose occasionally had to get up to take a breather.

It’s been hard work for him to get to this point.

Growing up he was terrified of loud noises, cringed in fear of clouds, spent an entire day at Disneyland in abject terror. But he also knew street directions as if they were hard-wired into his mind, memorized Los Angeles’ convoluted freeway system and once directed a substitute bus driver to each child’s house on his after-school route.

Rose’s disorder is neurological, affecting the functioning of his brain and causing an abnormal response to sensations. Those with autism can run the gamut from the completely uncommunicative, who find comfort in repetitive, rhythmic mannerisms, to the high-functioning who may seem just a little peculiar.

*

“You might find a kid who writes a history thesis but doesn’t think about washing his hair,” said Pegeen Cronin, a child psychologist at UCLA who specializes in autism. “Typically, what we see are these adaptive difficulties. They look normal, a good portion of the time they [act] normally, but they’ll likely have problems with friends. They might be made fun of.”

According to Cronin, one in 500 people in the United States has some form of autism, and though nobody knows why, diagnoses have exploded by 200% during the past decade. According to the Ventura County chapter of the American Autism Society, there are at least 325 people with autism in the county.

*

Rose functioned well enough to stay in mainstream school, although at first his mother had to fight to keep him out of programs for the severely emotionally disturbed. As a child, he had problems with “acting out,” frustrating easily--forgetting the solutions to puzzles he had managed only moments ago.

“We tried to raise him as normally as possible. We required a lot of Ryan,” said his mother, a small, energetic woman. “If he’s working hard at math, and he gets a C, that’s great. In English, though, if he’s getting a C and he should be getting a B, that’s different.”

She hovers at the outside of her son’s conversation, occasionally popping in to clarify a point, to make sure he is being understood.

High school, when the family still lived in Simi Valley, was not an easy period for Rose. He had few friends, he said, and was passed over as a graduation speaker. The family later sued the school, arguing that the Americans with Disabilities Act, which gives equal opportunity to those with disabilities, meant that the school should include a disabled speaker. A judge dismissed the suit.

College was a tough transition, too. Placed in a freshman dorm, Rose found himself easily distracted by the noise. He now lives in a graduate dorm with older students, on the top floor, where the rattling of chairs and clomping of feet won’t bother him. He has friends now--other people in the equine program--and he returns home no more than your typical college student, during breaks or every couple of months.

The college supplies support in the form of note-takers, taped lectures and tutors--help Rose won’t have once he graduates and must live on his own.

Independence is the biggest question in Rose’s future, he and his parents agree.

It’s an issue that plays a major part in the lives of many disabled people, who often find themselves under the wings of their parents, said Mike Ching, chairman of the Youth Leadership Council, part of the national conference.

*

“We really want to make sure that our participants advocate and speak for themselves,” he said. At previous conferences, “parents were there to answer every question for them.”

The Roses worry more about their elder son than they do his 19-year-old brother, Dan, they admit.

Ryan knows that once he is on his own he’ll have trouble balancing his checkbook, keeping track of his bills, even following the directions on a box of macaroni and cheese.

“I think about the future every day,” Rose said.

“I think about getting a job, living on my own. I know it’s going to be hard.”

*

’ Ithink about the future every day. I think about getting a job, living on my own. I know it’s going to be hard.’

Ryan Rose

21-year-old autistic man, who is studying animal science at Cal Poly Pomona