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Aging Out: Children, Autism and Caregiving

When services stop at age 21, what are parents to do?

By Sue Campbell

The U.S. autism rate has surged to one in 68 children, the Centers for Disease Control reported last year. What happens to those children once they turn 21?
A Dateline NBC segment that aired Sunday, April 12 was the culmination of Dateline’s three-year dive into that question. Reporter Kate Snow followed two families facing crisis because their autistic children no longer qualified for services through state education departments.
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Services are critical for these young adults who, as one mother explained, “will never outgrow autism.” Without trained, targeted interventions, they regress, obliterating progress that’s been painstakingly built over many years.
Common Caregiving Issues
In the families Snow followed, the mothers were their children’s main caregivers. As their sons aged out of the education system, they became eligible for Social Security and could apply for services funded by Medicaid. But their moms spent hours trying to patch together services from as many as 30 different agencies. After looking into day care programs and being put on a wait list of thousands, one of the mothers created an art curriculum for her son and taught him herself.
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The other mother made a wrenching decision to stay in New York with her son so he could continue to get the services she’d cobbled together while her husband moved to Florida for his job.
It struck me in watching this timely report that the issues midlifers face when caring for older parents are the same ones these moms, and thousands of others like them, took on. They were strong advocates for their sons, consulting with experts, determining what their children needed and finding the right help to provide it. They became experts themselves in navigating complex bureaucracies. They also suffered emotionally — caregivers have higher rates of stress and depression.
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Another thing that struck me was the financial Catch-22 parents with disabled children face. One mother estimated that the annual cost of caring for her son was $40,000 a year. Some years, she said, the amount had risen to $100,000. As a result, she told Snow, she and her husband hadn’t put aside anything for their retirement.
But retirement was just one worry. Both mothers were planning for what would happen after they were gone — who would take over caregiving then?

Because of this reporting, maybe by then, support systems will have evolved to accommodate those with autism, helping them to contribute and be as productive as possible, even without their mothers’ enduring help and love.
Watch a clip from the show:

To read Snow’s summation of her report and see a clip from the show, visit Dateline.

Sue Campbell was an Editorial and Content Director for Next Avenue. Follow her on Twitter @SuePCampbell. Read More
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