Autistic adults too smart to leave home

Enlarge Image

Robin Watson's (centre), IQ is too high for provincial living assistance so Watson lives with parents, Joy (left) and Darius (right). (HADAS PARUSH / WINNIPEG FREE PRESS )

Robin Watson is 21 years old, a fantasy novel lover, model employee and video game fanatic. But his parents are terrified of what would happen to him if they weren't around.

"It's the mad truck theory, right? The two of us get schmucked by a mad truck, what's going to happen to Robin?" his father Darius Watson says.

Robin is what autism advocates call a "gapper" -- he's unable to live completely independently, but his IQ is just a bit too high to qualify for the province's supported living program.

You might not notice anything amiss if you met Robin at the Selkirk Dollarama check-out where he works part time, even with his boyish way of speaking and pronounced concentration.

But Robin, who has high-functioning autism, needs constant reminders from his parents for tasks such as brushing his teeth, showering, leaving for work on time and paying bills.

For the many hours when he's not working, Robin retreats to his basement den, where he plays video games and watches anime videos.

As he plays, he often yells and swears at the screen. The explosion sound effects and Robin's loud cursing reverberate up through the house as Joy and Darius work in their home offices.

Sitting in the kitchen with his parents, Robin explains his outbursts with a smile, "I get angry. There's big competition."

Parents of adults with autism spectrum disorders (ASD) are not the only ones who end up taking care of their children until the parents themselves are seniors. Fetal alcohol spectrum disorder and acquired brain injuries create many gappers, too.

But people with ASD are the only ones that had a contentious five-year plan launched for them.

The Selinger government unveiled Thrive for people with ASD of all ages on June 28. Still in its infant stages, the program promises "help for young adults with autism to live independently."

The government is currently working with ASD advocates to finalize what this help will mean and says it's open to anything they suggest.

But Liberal leader Jon Gerrard says Thrive won't have much real meaning until the NDP says how much funding it will allot for the plan. The program was launched with an initial investment of $1 million, but that money will go entirely to services for children with ASD. More funding will follow at a later date, the NDP says.

Marty Morantz, the Progressive Conservative candidate for River Heights, who has an 11-year-old son with autism, says Thrive is "a good beginning" that is "too long in coming" and at the same time an election ploy.

But Gord Mackintosh, minister of family services and consumer affairs, said the investments the NDP has already made in ASD services prove that it's serious about Thrive.

Funding has risen 800 per cent to $32 million since the party entered power in 1999, Mackintosh says.

Anne Kresta, the president of Asperger Manitoba (Asperger syndrome is on the autism spectrum) is asking for a program to train adults with ASD on how to live independently and for a program that would see a social worker check in on individuals with ASD once they move out of their homes and into the community.

Kresta says IQ should hold less weight in determining how much support people get, and she calls for a revision of Market Abilities, the work-finding program that is currently the government's chief support for adults with ASD.

Robin's parents, for example, would like him to find full-time work, but in order to get help from Market Abilities, he has to be unemployed.

At Dollarama, Robin's supervisor, Julie Staub, has only good things to say about him. "I didn't have to go see Transformers because he told me all about it first," Staub jokes.

Robin often gets called in when other staff don't show up. He drives himself to work.

Robin's IQ is between 74 and 78. In order to access the province's supported living program, his IQ would have to be below 70, among other requirements.

To get him out of the house, Joy started bringing Robin with her to the school where she teaches Grade 3.

"He's 6-3, and he fits in really well. (The kids) love him, he's a great playmate," Darius say.

"I really liked that," Robin says.

Joy and Darius tell the story of a woman at their former church who used to bring her son to Sunday services. He had some sort of cognitive impairment. When the woman eventually died, he ended up on the streets.

Beyond his parents, brother and sister, Robin doesn't have friends.

But he lives in his imagination. He loves to put music on and pace, back and forth, building up plots about battles between good and evil in his head. One scenario involves six fighters charged with protecting the planet with special powers -- light, fire, lightning and dark magic. He reads fantasy novels by Tamara Pierce and has tried his hand at writing stories of his own.

Darius is considering setting Robin up with a place of his own and checking in on him regularly.

"Maybe as parents, maybe our next step is once our mortgage is paid for, we buy another house. You know what I mean? Without the rest of the world. Which is all possible," he muses.

For the time being, Darius and Joy are pleased Robin has begun showering before work without them having to remind him. It's a huge step, they say.

william.burr@freepress.mb.ca

Republished from the Winnipeg Free Press print edition August 27, 2011 A15