It was a pleasure to return to a group that has helped me get through some very dark times in my life. The attendees are a multi-faceted bunch and are a testament to the popular expression in my community, “When you have met one person with autism…you have met ONE person with autism!” I had a neurotypical friend with me that night for support and because she wishes to learn about this unique population. She was in for quite a night!
The gatherings of the Global and Regional Asperger Syndrome Partnership (GRASP), Inc. meet the second Wednesday of every month unless there is a disaster like Hurricane Sandy that prevents it from happening. The meetings are as predictable as the train schedules so many of my peers obsess about if their “special interest” happens to be the New York City Railroad. The meetings always revolve around a specific topic and this week it was “Disclosure.” It is always a battle to know when to tell you have Asperger’s syndrome, who to tell, if it is necessary to tell, if it will make things worse or better, and how to tell? Considering that lecturing about my case of Asperger’s is how I make a living these days…telling people is almost as natural as pulling up my socks. When you have a book titled, “Atypical: Life with Asperger’s in 20 1/3 Chapters,” telling everyone is part of the deal and I no longer have much fear.
But there was a time when the level of fear and hopelessness was so potent. It was when I was attending these GRASP meetings so many years ago. This was the first time I had been to a meeting in probably six months…at least. It is too far away and takes too much money to travel into the city from Poughkeepsie. My life has also grown easier these days as a respected public figure. When I began attending the GRASP meetings a few years back I was an angry, bitter person who was met with irrational fear from my own community. My four years studying to be a teacher in college were proven to be worthless when schools caved into the natural feelings of discomfort so I ended up working in purgatory for a while. But they did not call it that. It was known as, “The Twelve Hour Night Shifts of IBM.” In retrospect, I attended the meetings because there were people in much worse shape than myself. Sometimes it helps to understand that things could always be ten times worse. There were also people who had survived and broken out of their desperations by building flourishing careers and romantic connections.
Sometimes the meetings resemble a circus in the sense you never know what to expect. Nonviolent outbursts are common and it is probably because this is the only time when a group of us may loosen our ties and let our hair down for a little while without fear of consequences from a world that does not understand. I looked down and noticed the attractive, fiercely-quirky girl doing yoga moves on a mat in her bare feet. My companion looks at me and she says, “Why is she doing that?” I replied, “Because she has Asperger’s syndrome.” Apparently, the yoga girl has found success in the entertainment world and this leads me to wonder how many A-list celebrities walk among us who are affected by the autism spectrum and probably know it? When will one of these celebrities come out of the Asperger’s Closet and advocate for the rest of us?
Personality clashes are very common during these meetings when people are talking over others. Interruptions are as plentiful as salmon in a genetic hatchery. Tempers flare and inadvertent rudeness happens all the time. As I finished adding my two cents to a conversational topic, one of the members asked me, “Do you know you have patches of white hair all over your head.” I wanted to say, “Wow! Really?! I never actually noticed that myself while looking into the mirror every morning for the past two years, but thank you for pointing that out in front of everybody!” But I simply composed myself and explained that the white hair is caused by an autoimmune condition known as vitiligo, which causes the skin pigment to recede.” The same man helped me stuff envelopes in preparation for the Benefit last April and remarked, “You look thinner than when I saw you a year ago.” The comment may not have been meant as a compliment, but was cherished considering how hard I was struggling to lose weight.” My peers and I do not wake up in the morning to ask, “How can we creep people out more than yesterday? How much weirder can I be than last week?” It just happens and this is a group filled with forgiveness and understanding. How dare we cast stones when we all dwell in glass houses?”
As a public figure and role model, I felt it was my obligation to give the group advice on how to disclose especially given a job situation. It is always good to acknowledge the elephant in the room especially considering most people are not going to bluntly ask, “What is your deal?”
Most of us wonder when and where to disclose about the Asperger’s, but nobody really talks about the Fine Art of Disclosure. Ninety percent of my success has come from always knowing I have something to offer and continuously trying to show other people even if they do not wish to listen at first. I believe it is often important to disclose during job interviews especially if you gain the sense that an interviewer is doubting your abilities or asking questions like, “Do you feel like you could fit into an environment with so many different personalities and sensitive situations?” One should explain they have Asperger’s, but also explain how this will help in a working environment. Look the interviewer in the eye in a nonconfrontational manner and say, “I have challenges related to Asperger’s syndrome, but have made amazing contributions in past venues. I am very punctual and take commitments seriously.”
Every single person has their own way of confronting demons. I choose to put myself in the most uncomfortable situations and attempt to be someone I am not. I’ll be the square peg grinding its way into a round hole. “Hello Potential Employer! I have social troubles related to Asperger’s syndrome, but I also worked very well when I was employed by a funeral home. I was able to work with people on one of the worst days of their lives and would make a similar contribution at your workplace!” Disclosure will never work with brutal, unnecessary honesty such as admitting, “It takes me a very long time to learn certain things, I have difficulty understanding basic boundaries, there have been accusations of sexual harassment in the past.”
I wanted the GRASP group to understand that ninety percent of success is achieved by knowing you have something incredible to offer and having tenacious persistence. There was not enough time to go into much detail about how much persistence has benefited and hurt me over the years. On Thursday I finally have an interview with a school that fired me seven years ago because I was unable to let go of the fact that it was not fair. I deserve to be a teacher because of the success in controlling the inappropriate comments and will continue fighting. I am not able to always let go of the persistence that often rears its head in dating situations, but have learned how to do some serious “backing off.” There is absolutely no shame anymore and persistence almost always leads to amazing things!
My friend embraced the group as I knew she would and is one of those rare souls who appreciates the beauty of such a misunderstood, sometimes vilified, population. Now is a time when we have to band together more than ever to dissolve much of the fear that has been created by the gunman from Newtown, CT.
Let’s show the world who the autism population really is and the talents we have to offer. Know that you are incredible keep fighting the good fight as the world hopefully gives you a chance to show your “abilities.”
