Still Overlooking Autistic Adults

Still Overlooking Autistic Adults

Written by: Linda H. Davis on April 4, 2009


Question: What coming social expenditure will cost more than a third of this year’s budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?

Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 — more than 380,000 people — is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers — for you can’t separate the two — it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.

But most of these cognitively impaired citizens don’t vote. Most of them can’t live alone or work in public places. Many can’t even take public transportation by themselves.

Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. “Improving life-long services for people with ASD,” as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.

I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he’s home again from his supervised job — two mornings a week — because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.

Randy’s father and I are keeping him at home as long as possible, even as I’m battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we’re playing Russian roulette with Randy’s future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.

Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.

In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.

Linda H. Davis is the author, most recently, of “Charles Addams: A Cartoonist’s Life” and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.