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Aging with autism: A brother’s story

March 01, 2016
 
Author Eli Gottlieb shared with us his story about his brother, Josh, who has autism and lives on an assisted living campus. Josh, now 60 years old, has been a resident of various state and private run programs for individuals on the autism spectrum for nearly 50 years. When their mother passed away a few years ago, Eli became Josh's sole guardian. 
 
This is a glimpse into Josh's life, and you can hear about just a couple of the broader issues facing adults on the spectrum who require full time assistance.  
 
"The world of the adult individual with autism is sorely under-represented, both at the policy level — federally and state — and, most of all, in general. It's just not talked about," Eli says.
 
Eli wrote an Op-Ed for the New York Times, called "Adult, Autistic and Ignored," about the drop-off of services for individuals with autism once they reach age 21, and how this disconnect of services is affecting families:
 
"There is virtually no current substantive national discussion on the fate of middle-aged or elderly autistic people like my brother, who are living in therapeutic communities, or with their aged parents or in group homes, or sometimes undiagnosed in mental hospitals. Little research money is spent on members of this demographic, and there is almost no public policy debate on how best to serve them. Not much is known of the particular health problems linked to their long-term care, or how their autism progresses and changes over time, or what the cumulative effects might be of the medication they take to render them tractable enough to live in social settings." Read the rest of the Op-Ed here.

Are you an adult with autism, or a sibling of an adult with autism, and want to share your story? Email autismspeaksblog@gmail.com and we might feature it on our website!