Adults With Autism: Lack Of Resources and Misdiagnosis
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.
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.
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David Hirsh, may you be blessed & embraced by eudaemonia
Hi I am a male and this past winter feb 2018 at 55 i was digansoe with high functioning autism and mild congtive, this article will help people understand me bettter and i am still single in school i was told i was just a slow leaner, at this time still have no income or ssi and so I still live in my car little some help coming in but very slow I do not quelified for most county or ny state homeless programs plus most austism places in my area can not help me, i have had no home since may 2018
David, I am worried about you living out of your car. Is there a church that you could approach as they often have support ministries and help people like yourself. If you are willing to let me know what city and state you live in, I will try and do some research for you. This should not be happening in a developed country like the USA. I know this does happen, but we need to find some support services for you.
I appreciate this article as some of the families with whom I work as Triple P. practitioner ask me about the future prognosis and possiblities for their presently young children who fit on the Spectrum. I was wondering just today about a young woman with whom I am familiar, about how she might enjoy creating cards and sending them from a very user friendly system on line that would, then print, stuff, address , stamp and put the card in the mail for her. She is living with a supportive roommate and so she would be able to send cards to her mom and dad and other relatives and friends, she doesn’t see often ( i.e. her baseball teammates she doesn’t usually see until next season). I would be able to assist someone helping a person to set up an account, which would have to have both points and expense money (to cover the shipping and postage) added to it. These are cards one chooses and personalizes online then they get sent through the mail. The reason I am bringing this up here is that one can choose to send cards and tell others about it, thereby gathering a few customers, as a business, the person could run his/her own business venture, as an independent distributor, without any inventory space required. I believe in teaching others to fish so to speak, so they can earn money of their own.
Ruth, the cards sound like a great idea. Entrepreneurship can work well for those with ASD provided they have some support and guidance. Everyone needs meaningful employment, a way to spend their day, and money to pursue their interests. Thank you for taking the time to write.
Maureen, This is a very interesting article and I am going to pass along the book title. Hope to see you next time you are in Saskatoon.
Thanks for commenting, Kathy Jo. You are always so supportive of what I am trying to do here at Autism Awareness Centre. Hope to see you this fall in Saskatoon!
This article is so very timely as we have an 18 year old with mild autism and global learning days.We find ourselves worrying terribly about her future.We live in Ontario,have homeschooled,getting her involved in horseback riding and girls club.We are involved with every service agency we know to help her and to be honest we find ourselves exhausted as everything we have done has been on our own time and funds.Sadly I now find myself with a chronic illness and have had to hire a tutor for her.She would like to have a job and a future just like other teen girls.We are in need of help of a place where she can live in the future and blossom and thrive but where are they ?Thank you so very much for bringing this topic to light.
Lise, I know how hard you’ve worked as we have spoken before a few years ago. We are in the same boat with our efforts for Marc and Julia. Marc will be 19 next month and Julia will be 17 in March. Finding services and opportunities takes a lot of work. My children really want to work. I do think awareness about employment and autism is on the rise and things will improve within the next decade. We just have to hang in there and hope for better days ahead!