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:
- Employment First programs in Georgia and other states help shift the priorities of social service agencies so that the first step is to place people in a paid job in a regular workplace for as many hours a day as they can handle, rather than automatically placing young adults on disability when they age out of the school system at 18 or 21.
- Resource ownership, in which job-training funds and Social Security work incentives are used to buy tools or equipment that a disabled person will then use on the job. One young man bought a Bobcat that he used at a construction company; a young woman bought a commercial refrigerator that she used at a catering company. The equipment belongs to the individual, giving the company an incentive to keep them on the job.
- Starting a small business. Entrepreneurship may sound like an impossibly high leap for someone who can't speak. But it can work with the right support. Joe Steffy, 23, runs Poppin' Joe's Kettle Korn in Louisburg, Kan., with the help of his parents and five part-time employees. He has autism and Down syndrome and is nonverbal. Steffy got help establishing the business from the Social Security Administration's Pass Plan, which offers financial support in transitioning to work, as well as the state vocational rehabilitation office and council on developmental disabilities, which helped Joe buy the corn-popping equipment. In 2008, Poppin' Joe's had sales of more than $50,000. (Here's more on the story of Joe's business.) "Joe loves to work," says his father, Ray Steffy. "We see the quality of life he has and how he's become part of the community. That's priceless."
Advocates for supportive and customized employment say that in too many parts of the country, school and vocational counselors still suggest sheltered workshops as the only option. And the cooperation needed between families, employers, and social services agencies to make employment work can be tough to pull off. Wendy Parent helped one-high-school student work up a business plan to sell Kansas University souvenirs in a local coffee shop. The business and high school backed the plan, but the plan fell apart when Parent couldn't find a job coach for the girl. "You're going to find weaknesses in every community," she says. "But this is the time to experiment and try new things."
For more on how families can start planning a working future for children with autism, check out APSE (formerly the Association for Persons in Supported Employment) and its Network on Employment, which provides advocacy and education on supported employment, as well as the University of Montana's Rural Institute, which helps families find resources for supported employment. The Rehabilitation Research and Training Center on Workplace Supports and Job Retention at Virginia Commonwealth University has pioneered research on creative ways to employ people with disabilities and is a gold mine of information on transitioning to work or college.