For worse or for better, a recently published study in the Archives of Pediatric and Adolescent Medicine confirms something I’ve long known to be true: After high school, services for autistic teenagers and adults ‘plummet’ sharply, as MSNBC puts it. According to the study, about 40 percent of young autistic adults receive no medical, mental health, or case management services to help them transition them into adulthood.
Autism is a lifelong neurodevelopmental disability and there ought to be no cut-off age for receiving services and supports. Yet teenagers graduating from high school lose their special education services, such as speech therapy. Says study author Paul Shattuck, an assistant professor of social work at Washington University in St. Louis, in MSNBC:
“Difficulty with language and communicating is one of the core, hallmark characteristics of autism,” Shattuck said. “Being able to communicate with other people effectively is a fundamental ability that you need if you want to succeed in college or in a job or be independent as a young adult.”
And access to care as students leave high school is critical because this transition period “sets the stage for what happens in the rest of adulthood,” Shattuck said.
Shattuck and his research team analyzed data from questionnaires given to parents and guardians of young autistic adults (ages 19 to 23). More than 400 people answered questions about their children’s use of four types of services following high school: mental health services, medical services, speech therapy, and case management, and also about the ‘coordination of the patients’ care.’ Says MSNBC:
The researchers found the rates of use of these services all had fallen since the students were surveyed six years earlier. Most notably, the number of students receiving speech therapy dropped from close to 75 percent to 9.1 percent. While these two estimates are not directly comparable because some of the participants discontinued the study during those six years, the results still showed a steep decline in use of services, the researchers said.
Speech therapy can involve much more than just teaching someone to articulate and pronounce words correctly. It also provides valuable lessons in social skills, in the form of how to ask and respond to questions, and how to carry on a conversation. Indeed, these are all skills that my son receives instruction in via speech therapy at his school.
In addition, the study notes that the lack of services is much more stark among African-Americans and those from low-income backgrounds, according to US News and World Report: African-Americans are more than three times more likely to not get any services than whites. And families with incomes of less than $25,000 are nearly six times more likely note to get noservices than families with incomes of more than $75,000. Shattuck puts the point bluntly when he says that:
“Young people with an ASD and their families are pushed off a cliff when students leave high school, where special education provides many needed services…..Loss of supportive services generally means greater emotional and financial strain for family caregivers and reduced opportunities for the adult with autism to be productively engaged in the community.”
Shattuck calls for federal, state, and local policies that were created decades ago for adults with developmental disabilities need to be reviewed and revised. In decades past, a diagnosis of developmental disability was often understood as mental retardation, a diagnosis that, as earlier research by Shattuck has shown, has been declining in recent years, while diagnoses of autism have increased. Indeed, between 1998 and 2007, the number of autistic children ages 12-17 with autism who were enrolled in special education increased by about 15,500, to nearly 100,000, according to Shattuck.
To parents of autistic children like myself and many of my friends, this study’s findings fall under the category of ‘totally not news.’ My son will be 14 years old in May. He currently attends a county autism center where he is well provided for, with a full day of school, and regular sessions of speech therapy and occupational therapy, as well as music, art, and physical education. But what sort of jobs, programs and services will be available for him as an adult are one huge question mark, and all the more so in a time of shrinking budget cuts. For instance, in California, Governor Jerry Brown has proposed cutting $750 million from the budget for services for individuals with developmental disabilities. $533 million in cuts are proposed for the state’s Regional Centers, which provide community-based services for individuals with developmental disabilities—cuts that, as the Tri-Counties Regional Center notes, ‘could hurt [many] persons with developmental disabilities and their families.’
On the other hand, while seeing a fact of one’s daily life confirmed by a study in an academic journal offers no immediate comforts, it does give one evidence to cite in the ongoing effort to get services and programs for older autistic children and adults. This is an effort that my husband Jim and I, and so many parents, know will last for all of our lives and will not even end when we are gone.
While one hears reports from time to time in the media about autistic children ‘recovering’ and losing their autism diagnosis, autism is a lifelong neurodevelopmental disability. And, while there has been a tendency for research studies, and for the media, to focus on children (especially younger children) on the autism spectrum, this focus needs to broaden to include individuals on the autism spectrum of all ages. Many, though not all, individuals require lifelong services and supports. Some like my son, who is on the moderate to severe end of the autism spectrum, will need such services and supports for all of their lives, in the form of job coaches, staff who will live and care for them 24/7, drives to help transport them to jobs and activities. Shattuck’s new study makes it very clear why this stark drop-off in services for autistic teenagers and adults is something that must change—and why autistic individuals, and those who care for them, so often feel that they live on the edge of a precipice, ever in danger of losing life-sustaining services and programs.
Photo by shibuya246.