KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be splayed or neutered or sent to Limbo.
Until I received my diagnosis of Asperger’s syndrome four years ago, at the age of 50, this was a question I asked myself and others asked me. I always knew I was different. I had trouble making and keeping friends. I threw tantrums when words failed me. This happened surprisingly often for someone who learned to read by kindergarten, read three books a week, and surprised adults with her sophisticated vocabulary. I got into fights frequently, with boys as well as girls.
Still, my near-perfect grade point average and unusual and deep interests—including three years as a program engineer for a community radio station—helped me get into an Ivy League university far from the city where I grew up and where I knew I would never fit in. In college, I did well both academically and socially, in large part because in the more liberal, intellectual 1970s, many of my fellow students were just like me.
When I left the structured and supportive environment of my college and my offbeat social circle there, things began to fall apart. I failed to connect with an advisor in my first go-round of graduate school and had to drop out. I was fired from my first teaching job because I couldn’t control the class. When my husband got his Ph.D. and a full-time teaching job, I decided to write full-time, but my first agent and I broke up amid a series of mutual disappointments and misunderstandings. Five years later, I lost a contract with a major publishing house, again largely the result of miscommunication. I gave up my dream of becoming a published author of fiction because of what I saw as irreversible bad luck and bad choices.
How could someone so smart be so stupid? For decades I struggled with low self-esteem, underachievement, my sense of myself as having failed to live up to the promise that others saw in me and that I saw in myself.
After nearly getting fired from another teaching job and having a meltdown at a conference (conferences, with their bright lights, crowds, daunting travel logistics, requirements to dress appropriately, and upsets to routine are almost unbearably stressful for me), I was finally diagnosed. On one level, it came as a surprise, since many adults with Asperger’s find out because one or more of their children have an autism spectrum disorder, and neither of mine does. (Autism spectrum disorders have a strong hereditary component.) On another level, though, it answered a lot of question I had about my past and the way I interact with the world.
Several years before my diagnosis, I returned to writing fiction after giving it up for 16 years following the withdrawn book contract. At the time, I had one novel published by a small literary press and one on the way. However, I began to question my ability to write, given my history of misunderstandings, busted friendships, and inability to connect emotionally with others. Did my characters lack emotional range and depth? Would my writing fail to connect with readers? When my trusted editor died suddenly while my second novel was in production, I couldn’t finish the manuscript he commissioned or write anything new for a year.
People with Asperger’s have much to offer as a result of their special interests, their persistence, and their attention to detail. But we need supportive communities to reach our potential—people who understand our strengths and limitations and can help us create an environment to maximize the former and reduce the latter. I was fortunate to have two supportive communities. One is the place where I continue to teach part-time and which has both accommodated my needs and given me special projects related to curriculum design, one of my strengths. The other is a low-residency MFA program through which I’ve been able to take on a leadership position with an online forum (low-residency is good because we don’t stick around long enough for my quirks to become annoying) and where, with the guidance of my faculty advisors, I’m now making final revisions to a novel about a 14-year-old girl with Asperger’s, drawn from events in my own life at that age. Like me, my main character will do anything to have a friend, though she has little understanding of how to make and keep friends. She doesn’t stop trying, however, nor does she stop trying to find her own special power.
And that’s the main thing I learned from discovering as an adult that I have Asperger’s syndrome—all of us need and deserve to find our own special power.
A message from your moderator
Today's author tells me these sites are useful-
As far as Asperger's web sites, here are a few I can recommend:
http://www.ninds.nih.gov/... (information about Asperger's specifically)
http://www.autism-society.org/ (general information on all autism spectrum disorders, research, and resources)
http://www.help4aspergers.com/ (information for girls and women with Asperger's, including links to books by acclaimed author and psychologist with Asperger's, Rudy Simone)
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3:02 PM PT: Wow! I made the recommended list for the first time ever. Thank you, ulookarmless, for all your help and encouragement, and everyone who has participated in the discussion. I plan to follow up in future weeks with resources for adults and young people and posts on related topics if people are interested.