Not a Fairy Tale and Not a Tragedy: Autistic Adults
April 3, 2008 by Kristina Chew, PhD
Filed under Health
Writes Linda H. Davis in the Washington Post yesterday, April 2nd, World Autism Day:
While greater media attention on autism is certainly welcome, virtually all coverage of autism in recent years has focused on a cure or on the education of young autistic children. You would think that, like children in a fairy tale, autistic children never grow up. Yet parents are getting old, tired and ill caring for their adult children.
Davis’ son Randy is 21 years old and is able to work, with supervision. While the Individuals with Disabilities Education Act requires that individuals up to the age of 22 receive a free and appropriate education, “few seem to know or care that there is no similar legal mandate for them after age 22.” And two years ago, Davis discovered that she has an incurable form of non-Hodgkin’s lymphoma and learned that her life expectancy was an additional seven to nine years:
Suddenly, our plans to keep our autistic son, Randy, living at home with us indefinitely looked highly risky. When we sat down with our case manager from the state Department of Mental Retardation and requested an eventual residential placement for Randy — through my sobs — we were told that the agency would need six months’ notice.
Now the question is: Do we wait until I’m actually dying, or do we give up our son before we want to?
“An additional seven to nine years”: I can’t read that without feeling my breath catch and my heart beat faster. Charlie will be almost 18 and 20 in seven to nine years: Many of the college students whom I teach are aged 18 to 20 and they are not at all ready for independence (their mothers email and call me regularly).
Davis talks about hard stuff—realities of the kind people would like to push under the table or behind the refrigerator. But it’s a simple truth that today’s cute autistic preschoolers grow up into autistic adults and “cute” is no longer the word to use. They and their families live far away from fairy tale land (not that I’d want to live there, under any circumstances).
My own state, New Jersey, has created a New Jersey Adults with Autism Task Force. Today, Governor Jon S.Corzine appointed five persons to the task force, including Ari Ne’eman, the President of the Autistic Self-Advocacy Network (ASAN). Ne’eman was diagnosed with Asperger’s Syndrome at the age of 12 and is now a college student. On World Autism Day, he delivered this address to the Florida Autism Task Force. An excerpt in which Ne’eman notes the “true tragedy” about autism:
……….autism is not a tragedy. We are, as with any other minority, a community with unique needs, strengths, challenges and aspirations that are often distinct from the parent or professional voices that speak about us, without us. The true tragedy is the persistent discrimination, abuse and lack of access that continues to govern society’s approach to us. On this, the first ever World Autism Day, we assert that it is this prejudice – not autism itself – that we have a true interest in combating, in the interest of ensuring for every person the rights of communication, inclusion, self-determination and respect.
……
We on the autism spectrum can make significant contributions to the world around us and, with the right supports, services and education, we can and should be active and participating members of society. By pursuing the goals of inclusion, respect and access, we can make that a reality. I’d like to end with a quote from Jim Sinclair, the founder of Autism Network International (ANI), the first autistic self-advocate organization and a group from which much of the growing autistic culture developed from. “The tragedy is not that we’re here, but that your world has no place for us to be.” Today, on the first World Autism Day, I encourage all of us to think about what we can do to change that unfortunate reality and pursue a policy of autism acceptance, now and into the future.[my emphases]
Ne’eman highlights a number of issues of pressing concern including job training, employment, community living options, and bullying. He also calls for more research on Assistive and Augmentative Communication (AAC) technology and on quality of life issues, including “mental health needs, restraint reduction, health care access, transition, adult supports and a variety of other educational and service/support needs.” These are precisely the issues that I think about every day for more son: Where will he live? Will he have a job that he likes? How will others treat him?
In answer to my last question, I hope with respect and as the real human being that Charlie, alert to others, and no curious boy in a fairy tale.
“The face of autism today is an autistic adult,” the mother of another young man who is turning 21 recently said to me. And that’s another message that needs to beheard during Autism Awareness Month, and ever after.
I wish that HALF of the energy, commitment, passion, effort, etc. that goes into the anti-mercury-in-vaccines campaign (a campaign that, whatever its merits, seems to have been largely won) would go into making sure there are services and a safety net for adults with autism.
For example, I was stunned by the silence of the autism community when Social Security was under attack a few years ago. If everyone who works puts their social security contributions into private accounts, where is the money for SS disability payments going to come from? And if there’s no more SS-disability, what happens to the people who depend on it? That silence really turned me off of the national autism organizations. If they’re not going to fight for something like that, what good are they?
Even one-quarter of the energy etc. would make a difference.
Yes the life situation of autistic adults will be of concern as I have blogged about in the past.
http://www.suntimes.com/news/metro/blogentries/index.html?bbPostId=CzDMaRud1QrjpBDjpgmuOeQ59Cz9BpOMRZSZgwBB506ZBLS8bS&bbParentWidgetId=B8wu4iZ7dr873Su
It is nice that Mr. Ne’eman and other high functioning PDD spectrum adults who can attend college and write internet essays can be heard about their situation. I hope that the various task forces take into account the needs of the severely autistic persons whose parents and care givers actually understand their requirements and speak for them. And give them those parents and care givers an audience.
Finding care for my autistic, 54 y.o. uncle was a nightmare as there are no services for autistic adults in Canada. I was finally able to convince my province’s social services that I, as a sufferer of chronic illness (SLE, RA AND MS) was too ill to give Peter the care he needed as he had been abused and neglected by his own family. He has found a haven in an old folk’s home where he gets the medical care he needs and many a patient ear to listen to his “stories”. In fact, I can’t even find a doctor who will care for Peter and his autism and his history of abuse. No one wants to take on the challenge. A sad state indeed.
This is an issue that needs to be addressed NOW: before the kids grow up and, like my uncle Peter, are left without the social structure they so badly need.
@Jen,
I hope the home where your uncle is can provide him with the supports he need for the long term. What would be the first organization, agency or other group that you think should be first turned to?
@Harold L. Doherty,
As a college professor, being able to assist college students on the spectrum has been an unexpected and important vocation, as important as the teaching I have done and continue to do for my son. Very best wishes—-
From the Salt Lake Tribune, a report on the Family Work Center, which has been open for 50 years and provides employment for disabled adults.
Jen wrote, “there are no services for autistic adults in Canada”
Yes–little or nothing. Why? Here’s one reason: autism advocates here have rejected the existing scientific consensus (a high, stable rate of autism) and instread promoted the autism “epidemic.” In doing so, they are anti-scientifically denying that most older autistics exist.
E.g., FEAT, a powerful autism advocacy group fully supported by Mr Doherty, has widely distributed a “fact sheet” promoting the autism “epidemic” and claiming that few autistics (1 in 10,000) existed 10 years ago. This has resulted in political leaders being certain that most or all autistic people are young children. In this way, autism advocates in Canada have told governments that they have little or no obligation to notice much less provide services for older autistics.
Here is an article on Asperger’s and the workplace (particularly computer specialists), that you might find interesting:
http://www.computerworld.com/action/article.do?command=printArticleBasic&articleId=9072119
Kristina, I’m in awe of all you do to help raise awareness. You go so far beyond simply listing current stories in the media. I’ve highlighted your blog (again) and this post in particular on my diversity blog, BEYOND Understanding. Best always, K.
I can not find biomedical therapists or behaviioral therapists for my adult son who has Asperger’s Syndrome. I live near Atlantic City, New Jersey. Can you help me?
Thank you