Sheila K Miller, Multimedia Journalist
In the Living with Autism podcast, my daughter, Shelah Kaelyn Elias, 23 years old, talks about her experience aging out from the school system. It has been difficult for her and the family. She faced a system where she was passed on from one caseworker to another due to a lack of staffing. She said she feels unaccepted for who she is by Berkeley County and the State of West Virginia.
Shelah Kaelyn Elias, Author, Autism Advocate
Even with the hardships of transitioning into adulthood, Shelah has had accomplishments she can be proud of. She graduated from a vocational school. She wrote a book and a blog advocating for autism. She has her very first job interview on November 20 at the Berkeley County Library. She talks about all of this in the podcast.
In May 2020, the Center for Disease Control (CDC) reported 5.4 million U.S. adults live with autism. This report is the first estimate quantifying adults living with autism spectrum disorder (ASD). Autism is a disorder that has varying degrees of effects on relationships, communication, and self-regulation. These difficulties often leave an ASD person disconnected from their community.
This disconnection from their community is further supported in the National Institute of Health’s (NIH) study on applying social network methods to measure autist young adults' social capital, published September 3, 2020. The study reports about half of the young adults in the U.S. on the spectrum do not engage in college or a job in the first two years after high school, which is higher than other adults with other disabilities.
After graduating or “aging out” of the public school and pediatric care systems, there is a disruption of access to school services and support. Aging out happens when a disabled person reaches the age of 21 or 22, varying by state. All of the educational support and services guaranteed under the federal Individuals with Disabilities Education Act (IDEA) abruptly stops. The NIH study also reported over a quarter of autistic adults receive no services between high school and their early 20s.
The infrastructure needed to support the autistic community is not present. The resources within the states can vary greatly too. Resources will depend if you live in a rural area or within a metropolitan area of the state. In West Virginia, one of the top ten poorest states in the U.S., the services can be limited even more.
There are so many stories that highlight these facts; Shelah is just one of them. In Best Practices in Support of Aging Adults with Autism, Marlene Ringler talks of her experience in raising her son, a high functioning autistic. Child Mind published the article, Aging Out: When Kids With Autism Grow Up, highlighting other families’ struggles of transitioning an ASD child to an adult. Finally, The Atlantic’s The Coming Care Crisis as Kids With Autism Grows Up focuses on Marie Solomonik and her husband, Eddie, as they attempt to find a facility for their autistic son, Anthony.