Because autism first manifests in childhood, we tend to think of autism as a childhood disorder. However, the first generation of people diagnosed with autism in childhood are now reaching middle age, and many mature adults who “slipped through the cracks” before then are being diagnosed for the first time.
Why We Want to Study Autism & Aging
“There is almost no literature on older adults with autism in the field, so we have virtually no knowledge base,” says Joseph Piven, professor of psychiatry at the University of North Carolina at Chapel Hill.
The Autism Research Foundation is interested in building a knowledge base for these aging adults with autism, so that autism professionals can:
- help families transition their loved ones into appropriate adult care and a meaningful quality of life
- support the growth and expansion of assistive technology programs that improve communication for the adult and for the adult’s caregivers
- educate physicians in the unique care of adults with ASD in-office and in-home
Transitions & Family Life
The transition to adulthood can be an overwhelming experience for any family, but it is often especially difficult for families in the autism community. Many aren’t sure of what is to come on the road that lies ahead, and as a result, the journey can seem daunting.
The “Drop Off”
Children with an ASD diagnosis have Individualized Education Plans (IEPs) that map out the approaches to education and learning supports throughout their K-12 years. However, after 22-years-old, individuals with ASD are phased out of the school system, which means the IEP phases out, too.
Adults on the spectrum can be left without direction post-secondary education, and this unfair “drop-off” is often coupled with unemployment, unfavorable/non-independent housing, and minimal appropriate healthcare services.