Autism is growing up. The children diagnosed with the developmental disorder in the 1990s are now teenagers, and they and their parents are starting to wrestle with the question of how they will live as adults. "Unfortunately, I don't think we as a country are ready for that," says Peter Bell, executive vice president for programs and services at Autism Speaks, an advocacy group.
With the rate of autism cases rising from 1 in 2,500 15 years ago to 1 in 150 today, the number of families seeking to map out a secure future for a child with autism can only rise. "We really need to change the paradigm about what people with autism are capable of doing," say Bell, who is just starting to face that question himself. His 16-year-old son has autism and is a freshman in high school. "They generally have some great employable skills that haven't been held to the highest and best use."
Around the country, innovative programs are now offering young people with autism a vital choice-the chance to work, go to college, or even start a business, rather than go on disability and be consigned to a sheltered workshop. There's an economic incentive in this time of strained government budgets; a person with autism costs society about $3.2 million over his or her lifetime, including lost productivity and adult care. Each hour spent collecting a paycheck and not collecting disability lowers that cost. And the personal benefit is incalculable.
The biggest news is an approach called "supportive and customized employment," in which school systems and state vocational rehabilitation programs work together to help teenagers move into the workforce while still in high school. Counselors work with employers to figure out how to make aspects of a disability an asset. "A lot of your obsessive-compulsive behaviors are a real asset on the job," says Wendy Parent, a research associate professor and assistant director at the Kansas University Center for Developmental Disabilities. One young man who liked to push buttons and enjoyed the sound of swishing water, for instance, started a small business washing towels for hair salons. The goal is not to guilt-trip employers into taking special-needs workers but to show how they can be useful. "It's always framed in a business sense. We're not asking for charity. We're saying this person can work for you."
Other new options include: