John Hare, 28, is a young adult well along on the autism spectrum. He is pictured here alongside his 3 neuro-typical siblings. Despite a life that presented challenges to every member of his family, and a very rough stage in John’s early 20s, when he was prone to aggressive “outbursts” that could include self-injurious behavior, he remains extremely close to his family and siblings, and they to him. “Young adult autism” is how we refer to that stage, because it seems to be a part of all too many lives on the spectrum. These kinds of behaviors can be a lifelong issue for many. Perhaps it’s simply the adult-sized individual that makes these so profoundly difficult, but these behaviors make the burden of transition to an adult living situation all the more challenging.
John and his family are searching for that living situation for him now. A meaningful life – one that allows him the opportunity to make a contribution to his community, and provides a place where he can live safely and with the benefit of community -- has not yet been found in the bay area. Although we feel extremely fortunate that these behaviors are now rare, they remain a possibility when the sensory overload provides no other outlet than physical, and they limit his options all the more.
After each episode, John grieves for hours, and it is a heart-wrenching experience. He sobs openly, apologizing in his own way, repeatedly saying “sowwy,” and it becomes all the more obvious how little control he has over his situation. Months, even years, may go by when John lives as John, enjoying “Blues Clues,” long walks with family and friends, outings to restaurants and the theater, and participation in the few opportunities he is afforded to make his own way in the world. Still, the possibility of his loss of control weighs upon us, and we acknowledge the challenges this brings to underfunded and overly burdened service organizations and the Regional Center.
When John was born in 1986, one in 10,000 was diagnosed with autism. The number now is one in 68. Regional Centers are dealing with the swelling numbers of young adults leaving the school system, and entering “adult services,” with profoundly little support from the state.
We firmly believe that with the right support and in the right place, John could make his contribution to his community. We also firmly believe that purpose and activity provide meaning to John, and to his peers. It is considered a “spectrum” because autism can present in so many different ways. Those with behavioral challenges require specialized and appropriate support and services, yet even as the numbers entering adult services grow, services are cut.
I often wonder if the outbursts are despair and grief that manifest physically, as he makes his way in a world that cannot accommodate him. The loss of his school community, of education and the daily, meaningful activities afforded when in school, also plays a part. Once school ends, the young adult seemingly falls off a cliff – families are left to sculpt something together from the “warehousing” programs that pass for a day’s activities, and with nothing from 2:00 pm or 3:00 pm onward, when they are shipped back home. The programs that do offer more are full to capacity, with impossibly long waiting lists.
Surely, we can do better than this, and I urge all parents with a child or children on the spectrum to become more politically active and make your voices heard. Information is available at sfautismsociety.org. Look for a list of specific things you can do in upcoming blogs.
John's family continues to search for an appropriate place for him. His family would very much like to hear from others facing similar challenges.
Anne Blenman Hare, the mother of a young man with autism, lives on the Peninsula. She can be reached at firstname.lastname@example.org.