For those not familiar with the landscape of autism politics, fellow PT blogger Stanton Peele's recent post, "Why We Can't Solve Autism," provided an excellent snapshot. The article which he references, "Growing Old With Autism," by Karl Greenfeld brings up yet another facet of the discussion - adults with autism. Reading it drove home my own misgivings about the lack of information, programs and support for adults on the spectrum.
What happens when someone with an autism spectrum disorder ages? For less able individuals, like Mr. Greenfeld's brother Noah, the landscape is rather bleak. As Mr. Greenfeld writes, "...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."
This is an issue that has deeply troubled me since I began to seek help for myself. As a fairly able person with Asperger's, my needs were not nearly those of someone like Noah Greenfeld. But yet, it was a struggle for me to get even the basic information about ASD in adults. Searching for information and resources, I found only a handful that were geared for adults. Even the bookstore yielded only books with titles such as,“Asperger Syndrome And Difficult Moments: Practical Solutions For Tantrums, Rage And Meltdowns”, “Asperger Syndrome and the Elementary School Experience: Practical Solutions for Academic & Social Difficulties”, and “The Asperger Parent: How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humor."
While worthy titles I'm sure, they weren't what I was looking for. I needed to learn about adult relationships. How could I better my social and relationship skills? What further could I learn about how to succeed in a professional environment? And, beyond that, what about the fact that I was a woman? So much of what I found just did not apply.
Information was thin on the ground, and I hungered for it. As much as a diagnosis has been positive, it also had a dark side. One that had the potential to be very dangerous. Throughout my life, I had been aware of my difficulties, but I thought that it was temporary. That, if I "got over childhood baggage" or learned the right self-help technique, someday I'd be "normal" and I wouldn't struggle anymore. Everything I read about autism and Asperger's stressed early intervention as being critical for success - with me, that ship had sailed. What did that mean? Was there any hope - or was I screwed? Where could I find people like me? Where were their stories?
In the absence of information, I felt lost. Worse, I questioned myself in areas I had never thought to question myself in before. I was self conscious. Am I making appropriate eye contact? Am I looking too long, giving a glassy eyed stare? Or am I giving people the impression of a shifty person, not looking at them enough? It went on and on.
If before I had been unhappy with the quality of my life and relationships, now it was worse. All of my relations with others were called into question now. What should I do? And, for that matter, if Asperger's is fixed, then was I stuck in this pain and suffering for my entire life? Would it never get better? In the moment, it didn't seem so.
To make matters worse, the few books and sites that I found that touched on adults were written with a very negative point of view towards those with Asperger's or autism. These books and sites, often written by ex-spouses or traumatized children of undiagnosed parents, referred to us as "thorns" or "leeches", and stated things like, "Those born with the affliction of Asperger's Syndrome survive at the emotional and psychological expense of others."
This allegation troubled me quite a bit. I believed very strongly that being a good person meant treating people well - not hurting others. If I was "surviving at the emotional and psychological expense of others," I was violating my own values simply by existing. Considering that I was already was grappling with depression, hopelessness, and struggling to find my place in the world as a person with ASD, you can imagine that these these types of statements were very troublesome.
Eventually, I found a few worthy sites, books and groups which began to give me some hope. Things began to change.
During all of this, I thought of people like Noah. If I had to fight for information like this, I could only imagine what the landscape was for someone who didn't have the ability to self-advocate. Fortunately, Noah has family that love him, and advocate on his behalf. But, what of those whose families are less committed? Or those that have none? Who advocates for them? The gulf, for them, is immense.
The grim fact of the matter is, it doesn't matter how much you push for services if the programs do not exist, or are continually cut. And, it takes information and research to design good programs. Research that is currently not being done on adults.
Karl Greenfeld writes:
"Low-functioning adult autistics are viewed with sympathy but not much scientific inquiry. No one has broken down how many dollars are actually flowing to adult autistics, but at the International Meeting for Autism Research in Seattle in May 2007, I counted more than 450 papers and presentations and three dozen talks on autism given by academics and specialists; of those, only two dealt with low-functioning adults, and neither included a cohort large enough to be statistically relevant."
While allocating research monies, I understand the impulse to focus on the immediate need, which is the many children diagnosed in recent years. However, the fact of the matter is that it will not be long before these children are adults. If things stand as they do today, will we be ready? Will we be able provide them the resources they need to live successfully as adults? To not only live, but live fulfilling lives? Without a change in approach - I really fear that we won't.
This worries me every day - most especially because of one simple fact: If I had been born with a bigger dose of autism, I could've been Noah.
