Many of us fear what will happen to our children with autism as we both age, particularly those of us with children who will require life-long care. Aging in autism however, is a much understudied phenomenon. While there are many resources available to help parents of young children with autism, very little is discussed or available for those over forty.

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So where are all the adults on the spectrum?

First of all, autism and autism diagnosis is much more recognized in mainstream society than it was 30 plus years ago when many children on the spectrum either fell through the cracks, were misdiagnosed, or managed to cope well enough to carry on without a diagnosis. This means there is a whole generation of older adults who were never diagnosed with autism when they were children. They either wound up in institutions, or “hid” in the mainstream.

One example is Scott Hartman who was finally diagnosed at the age of 55 after years of struggle. He was misdiagnosed with schizoaffective disorder and manic depression (now called bipolar disorder). He spent much of his life in and out of group homes and psychiatric institutions, often heavily medicated. After receiving an autism diagnosis two years ago, Scott is now living independently with some support for daily living skills such as grocery shopping.

Joseph Piven, professor of psychiatry at the University of North Carolina at Chapel Hill, says,

“We don’t have that concept with autism that people live a whole life: What happened to them as they got older? This is just a huge area of no knowledge. There’s almost nothing written about autism and geriatric populations.”

The few studies of older adults with autism suggest they suffer from a myriad of health conditions and lack appropriate support. Many of the adults with autism are male and unmarried.

The problem with this lack of understanding of autism in older people is that if mental health professionals don’t know what autism looks like in older people, they can mistake autism traits such as repetitive body movements as other disorders such as obsessive-compulsive disorder or even psychosis.

There is a superb article called The Missing Generation which explores the issue around misdiagnosis of adults and medical mismanagement. This is worth reading, particularly if you know someone who suffers from long term mental health issues that may better be explained with an autism diagnosis.

For those of us whose children are getting older, we can prepare ourselves and them with Guiding Your Teenager with Special Needs Through the Transition from School to Adult Life or Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger Syndrome.