Autism and Aging: What Happens when Children with Autism Grow Up

Photo by: Benjamin Earwicker/Flickr

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.

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  1. Posted September 23, 2010 at 10:31 pm | Permalink

    Thank you for another informative blog. Where else could I get that kind of info written in such a perfect way? I have a project that I am just now working on, and I have been on the look out for such information.

  2. investigative news stories
    Posted January 16, 2011 at 12:12 am | Permalink

    Go to youtube and type in “severe autism” to see autistic adult. Family is strong advocate for inclusion in community for severely autistic adults with challenging behaviors. And why not, after all, we, the public are forced to hear about and see the “challenging behavior problems” of our politicians, celebrities and government officals, Shoot, autistic adults are a breath of fresh air compared to these clowns and their pervasive freakish behavior.

  3. MM Quigley
    Posted October 2, 2011 at 8:15 am | Permalink

    I have recently become a stepmom to a 31 year old autistic boy/man. It is frightening to see how little information is out there about adult autism. Our son is, fortunately, high functioning… He is employed, drives, cooks for himself, cares for himself. His social skills are about half of his chronological age which can make interactions at work very challenging. He is very sensitive to loud noises which makes it difficult if someone in a nearby cubicle plays music or if people are talking loudly near his work area. He has a problem initiating phone calls which means he is challenged by simple tasks like calling out of work if he is sick. He has been living in an efficiency apartment over a family member’s garage. We recently moved him into a small house. Although he has managed his cell phone bill and car insurance in the past, now helping him set up utilities in his name and explaining what renters insurance is for without causing major anxiety has been a challenge. Figuring out how much he or isn’t able to handle in this process has been a learning experience for his whole family and we are still hoping that we haven’t put him in a situation that is too much for him. The move was very stressful for him, but his stress seems to be decreasing gradually as he gets into a routine. But the first time a smoke detector goes off or the electricity goes out are going to be scary moments for all of us.

    When I look for information about job skills coaching, I find very little. Questions about whether he will develop beyond his current social skills level and studies about continuing skills development in autistic adults is hard to come by. He was diagnosed as a child when no one really knew what autism was. He clearly got good guidance and tremendous dedication from his (late) mother that account for how highly functiioning he is. There is a huge population of autistic children today who will need these answers in the next 10 – 15 years, so why is there so little information now? There is great information about legal and financial issues to be considered, but what is the most effective way to coach and continue development of an autistic adult? How are issues such as isolation and health and being sedentary best discussed with an autistic adult? So many more resources are needed for this group!

  4. Ayesha
    Posted October 27, 2016 at 8:54 am | Permalink

    It is impossible to find a residential institution for my 24 year old son. Pakistan is a country badly in need of these services . Thanku all for sharing info.

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