In a TIME magazine article “Growing Old With Autism,” published in May of 2009, Author Karl Taro Greenfeld describes the impact of his brother Noah’s care as he and his siblings are involved in their adult lives today. Karl writes, “I toured those state hospital systems with my parents when we started looking for a place for a growing-up Noah. Those were terrifying visits: adult patients wearing helmets and restraints, howling and hitting themselves.”
After aging out the well established Board of Education IEP process, “for the profoundly autistic, graduation is perhaps the saddest day in their lives. For those who cannot enter the work force, continue on to more education or find some sheltered workshop environment with adequate staffing, there are few options. Far too few programs and resources are allocated for adults with autism.”
By age 35, Noah had been living in institutions since he was 18. Greenfeld says “My parents are now in their 70s. My father underwent open-heart surgery a few years ago. Eventually, the responsibility for Noah will fall solely upon me. My travels, from Los Angeles to New York City to Paris to Tokyo to Hong Kong, will always bring me back to him. I don’t know any other life. I have no other brother.”
Aside from more general concerns such as residential and financial status, there is little known about how to cope with the daily struggles and complications that individuals with autism face as they grow older, with this disability. Considering that not all of those with autism, or a similar disability, will be living in a managed care situation, analysis and data collection into the most basic themes of aging and autism are necessary.
Across the globe, in Israel, the services for adults with Autism have been sprouting up all across the country at an astonishing pace. The number of state-of-the art institutions and in home care services are based on new millennium planning and well researched models, which is worth duplicating globally. For example, Aleh’s network cares for Israel’s most severely disabled children, offering the best rehabilitation, the economical and social future of people with autism in Israel. Aleh has built a village in Israel called Aleh Negev for seriously disabled children for when they become adults, a rehabilitative village for individuals who need around-the-clock therapeutic care. Funds are raised in the United States with the American Friends of Aleh Foundation, to keep this costly project alive.
In July, the International Center for Autism Research and Education, Inc., (ICare4Autism) held their first annual International Autism Conference in Jerusalem. Over 600 attendees filled the Ramada-Renaissance for the grand scale event that featured over 30 speakers from around the globe. This conference featured medical and educational information pertaining to autism and also features lectures on ” The Aging with Autism Process.”
In America, employment rates haven’t changed since Americans with Disabilities Act passed. A recent survey from the National Organization on Disability reported, “Of all working-age people with disabilities, only 21% say that they are employed, compared to 59% of people without disabilities.”
Liz Bell, the mother of Tyler, who has autism, is a very forward thinking person who has appeared on ABC news “Parents of Boy With Autism Map Out His Future as an Adult”. Very few resources exist for adults with autism, leading many of them to live life in isolation. The Bells want to avoid that fate for their son, but they worry what his future will be like when they’re no longer there to offer support.