Adults and autism: society needs to step up

This opinion piece in the San Francisco Chronicle details the concerns shared by many parents of children with autism and other disabilities. What happens when these children grow up … and grow out of government-provided support?

In 1989, I began my career teaching high school at Spectrum Center for Educational and Behavioral Development — now known as Spectrum Center. It was my job to educate young men and women with autism age 16 to 21. I perceived my job to be preparing my students to lead productive meaningful lives upon graduation. I thought my students would emerge from high school with the skills I had encouraged them to learn and the support in place to have a job, live with the greatest degree of independence possible, and enjoy their adult lives. My students had significant challenges including difficulty communicating, aggression and self-injury. They required support to ensure participation in daily life activities — clearly these supports would be in place for them to achieve this meaningful life upon graduation from Spectrum Center.

I was sadly mistaken.

Support for adults with autism is abysmal. The good news is that I was in California where the Lanterman Developmental Disabilities Services Act entitles adults to some support. Most states have no entitlement services — there is no guarantee that adults with significant developmental disabilities will receive support after age 21 for the majority of individuals in the United States.

The expectations from the social service agencies were not that my students would lead meaningful lives. Lives that would include supported employment opportunities to learn and develop new skills, recreational opportunities and supported living. The expectation was that my students would be cared for somewhere — sometimes in a large congregate facility … sometimes in a large day program where the expectation was to sit quietly with groups of 20 or 30 other individuals with developmental disabilities. Sitting quietly was not an area where my students achieved a lot of success. I didn’t deem this to be a great result of my hard work prior to graduation. I’m sure my students with autism were not overjoyed with spending their lives in these facilities either.

I’d like to think that by now, almost 20 years later, our society would have decided that individuals with significant needs should have those needs met through the social service system. Unfortunately, not much has changed since 1989. California still has the Lanterman Act where some services are provided. The rest of the country continues to end entitlement services at age 21 — even for those with the most significant disabilities.

We must take action. Our society must step up and achieve the goal set forth by Hubert H. Humphrey 30 years ago: “The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.”

Currently in Congress, programs important to Easter Seals and adults with disabilities are slated to having their funding maintained, with no increase for inflation. A few programs, including Vocational Rehabilitation State Grants, are poised to receive only modest increases. Please ask your legislators to make funding for people with disabilities a priority.

Learn more about Easter Seals’ services for adults with autism.


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