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Wednesday, April 19, 2017

The Clock, the Calendar, and the Cliff

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

At Time, Katherine Osnos Sanford writes that the special education system is not enough for her daughter.
Whem the school day is over, there is another question: What now? Many schools provide afterschool-care for regularly developing students — everything from chess club to a quiet place to do homework— but, for special-ed kids, the school day ends at three o’clock. According to a 2014 study published in Pediatrics, a family with a child on the spectrum spends, on average, over $17,000 more a year on health and childcare costs than a family without one. To make matters worse, according to a 2012 study in the same journal, mothers of autistic children also earn, on average, 56% less than other mothers, because so much of their time is required at home. So, what if schools provided after-school care for special-needs students, as well? What if they provided opportunities to develop important life skills, with field trips to useful destinations, like the grocery store or the ATM? This kind of program would allow families to pay for their child to be in a safe and familiar place — and allow school districts to augment the salaries of support staff who choose to participate.
And this educational structure should continue well beyond the ages at which a regular-ed student graduates. For students on the autism spectrum, the need to learn more in order to support themselves does not end at the dawn of adulthood. In many cases, an autistic student will go from a school in which she is supported by a team of teachers and aides, in an environment that seeks to include her as much as possible with students in regular education, to a far more secluded and limited life. Kevin Murray, a founding board member of Autism Speaks, is the father of a 22-year-old son who recently aged out of school and entered the uncertain world of adult care. The change has been radical. As he compared to me the services that his son received when he was in school to his current situation, he asked, “When did my son become less valuable?”
Deborah Rudacille writes at Slate:
There are a number of pretty good studies that describe fairly well the difficulties that young adults with autism face, in terms of unemployment and underemployment, in terms of comorbid mental health issues, in terms of not getting the services they need,” says Julie Lounds Taylor, assistant professor of pediatrics at Vanderbilt University in Nashville.

So far, however, there’s been little research to determine what sort of support and services these young people need. Instead of getting extra help during these vulnerable years, they face a major impediment: a sudden drop-off in support at graduation, when federally mandated services abruptly end—a phenomenon that researchers call “the services cliff.”

Itineris [is] a community-based program created in 2009 by nine Baltimore families who realized that after high school graduation, there would be no specialized services available to help their children on the spectrum become more independent. In addition to providing job training, Itineris staff take the 70 or so young people in the program on outings to restaurants, amusement parks, movies, and bowling.
Researchers tend to focus on employment among young adults with autism for one simple reason. “We find that for many people, employment is not just about a paycheck. It’s about opportunities for social inclusion, meeting other people, for self-expression and identity formation,” says Paul Shattuck, director of the Life Course Outcomes Program at the A.J. Drexel Autism Institute.

But without the help of an organization like Itineris, finding a job is tough—and sticking with a job even tougher. Though about half of young adults on the spectrum work for pay at some point after high school, only 1 in 5 work full time, with average earnings of about $8 per hour. Their rates of employment are lower than those of people with language impairments, learning disability, or intellectual disability alone.