In my last post, I wrote about being diagnosed with Asperger’s Syndrome when I was 40. I thought it was a good fit and explained a whole lot of things that had always puzzled me. But it didn’t seem of much use so I filed it away in the back of my mind and carried on with my life. I figured I was already an adult and had developed coping skills, flawed thought some of them may be, and had identified and accepted my idiosyncrasies and limitations. I was wrong.
I had a therapist once who had a tough-love kind of counseling style. Sometimes, I would tell her something I had realized about myself, some insight I thought was relevant or important, and she would nod and say,
“Okay. So what?”
I think her point was that insights, or new information, are only helpful if you use the new perspective to effect positive change in your life. She continued to use the phrase on and off throughout our therapy to get me to follow through with my thinking. (Or maybe she was just daydreaming about Wynona Judd and that was just what she said instead of, And how do you feel about that?) But annoying as the habit was, it did lead me to see and accept that self-knowledge is only helpful if you use it.
When I was first told that I was on the spectrum, I thought, Wow. That explains a lot, followed closely by, It might have been cool if people had known that when I was a kid.
Because for 40 years, I was just weird – socially inept, absent-minded, awkward, angry, clumsy, withdrawn, fidgety, nervous, intense, and emotionally immature. From the time I was very young, I was told that I lacked self-control and common sense, that I was too smart for my own good, too timid to make friends and too stubborn to try new things, that I lacked grace and taste, or that I was just spoiled rotten. These aren’t adjectives or descriptions that I picked. They were chosen for me and over time, I suppose I internalized them.
Though Hans Asperger had done his work 3 decades before my childhood, Asperger’s Syndrome didn’t make it into the DSM-IV until 1994, ten years after I graduated high school. (And now the American Psychiatric Association plans to remove it from the DSM-V which will be published next year. But that’s a whole other essay.) So now there seems to be this whole group of adults, including me, who finally have a workable paradigm that makes sense of their feelings and perceptions and behaviors, but it seemed to come a few decades too late.
I didn’t give it much more thought until recently, when my friend, Catherine, retired.
Every once in a while, I meet a person so warm and down-to-earth and genuinely caring, that I suspect right away that they are exactly what they appear to be. Catherine is like that. I liked her instantly – which hardly ever happens for me. (I tend to reserve judgment on new people I meet, because it generally takes me a long time to really assess their character.) So I thought it was particularly fortunate for our family, that Catherine came into our lives, because she is also an adept teacher and communicator, a deeply intuitive therapist, the author of 3 books on autism, and for many years, a member of the team at the Asheville TEACCH center.
Catherine became “our person” at TEACCH. She was on the team that evaluated our son, G, 12 years ago, and became our go-to person when we had questions, needed advice or reassurance, or desperately wanted back-up in IEP meetings at school. She helped teach us how to make schedules and write social stories and to communicate with G through all the struggles from potty training to dealing with bullying at school. And she has the most remarkable smile. When Catherine smiles, I always want to smile back.
So when my partner asked me to be evaluated, I wrote to Catherine. Poor woman. I sent her eight pages of evidence for and against and asked what she thought. She read every word, complimented me on my writing, and said, Let’s get you on the schedule.
One of the things I loved about Catherine was the way she defined autism in her book, Asperger’s…What It Means to Me. Autism, she wrote, is another way of thinking and being. It was a much more affirming way of describing it to our young son than telling him he had a “disorder.” We have never felt that autism is a disease that needs to be cured, never wanted to tell G that he is broken and needed to be fixed. Autism is a fundamental part of who he is. We wanted to help him get along in the world given his different way of perceiving it, not change who he is. And Catherine was the first to give us words to express that.
So when I was evaluated, there were people telling me, for the first time, that there was nothing fundamentally wrong with me. I was just different. I didn’t need to be fixed. I think that’s what I couldn’t accept. Our son is a loving, wonderful, unique person and I would never want him to be anybody else. But I had spent my whole life wishing I was somebody else – someone who was laid-back and happy and comfortable in their own skin, somebody people liked, who made people feel good instead of making them uncomfortable. I wanted to be Jimmy Buffett.
But since I couldn’t play guitar or sing (and I don’t care for flip flops or Margaritas), I had just resigned myself to being me and to being unfixable. Catherine changed my mind – by retiring. Because being who she is, she’s not really retiring. She’s just leaving TEACCH and moving on to a new way of helping people on the spectrum.
One of her retirement ventures is TAG: The Autism Gathering. Catherine and another remarkable lady from the TEACCH center in Asheville, Carolyn Ogburn, conceived and launched this project to promote the empowerment of autistic adults.
You can visit the TAG blog right here on WordPress for essays and stories by and about Asperger adults: http://tagalogblog.com/
For more about Catherine Faherty and how she will be spending her “retirement” continuing to help make the world a better place for children and adults on the spectrum, check out her website: http://www.catherinefaherty.com/
And for more information about Tag: The Autism Gathering and the weekend retreats they sponsor, you can visit the TAG Asheville page on Catherine’s site: http://catherinefaherty.com/tag-asheville.html
If you have any thoughts, stories or questions (or more adorable cat videos, thank you very much Sandy Sue!), please leave a comment below!