The Day I Was Diagnosed With Asperger's and Selective Mutism
Age Mid-30s: The Day I got an autism diagnosis
My mother was visibly shaking and stammering; smiling and laughing like she did when she was unnerved. She and the doctor, Lynn, sat near to each other, facing me, and I was alone to view them and the window with its occasional pigeon fluttering by.
Apparently I was ‘dysthymic’, had a flat mood state. Was non-expressive and as my mother confirmed, “She always was...” Her crepe paper lids were getting pink. I handed her a tissue box. I was elated. I was being explained! Lynn told her I fell somewhere along the autistic spectrum, specifically Aspergers. My selective mutism was lifelong and waxed and waned, some days worse than others.
Smiling deep dimples into my plump cheeks, I told my mother it was not her fault that I never wanted any interaction with other kids. I told my mother, “You had me in Brownies, Girl Scouts, camp; even became my leader. You had me take catechism with nuns, and you put me in the 4-H club and even had me riding down Main Street waving to people in the annual Christmas parade. You brought me to your Dutchmaid, Artex, Tupperware, and food demonstration parties where the man set the dessert on fire at the end! You sent me to go with Betty to watch her square dances, and you brought me to PTA meetings with you and even became the lunch lady at my school. You did all you could to 'socialize' me, and it hasn't failed. I'm just differently made-up. But it's normal, for me”.
It was a revelation, a beginning. Now I knew what I'd always suspected, I could perhaps incorporate what Donna Williams did to cope- tool my environment to suit me. That's what we were asking the school to do for my son Jeff, and it's what I needed to figure out how to do in my own life. My mother accepted Lynn's tissue and dabbed her reddening eyes. She asked Lynn some questions as I sat, grinning. In the words of Steve Martin, I was thinking, “Things are going to start happening now!”
At home later, my spouse Howie sat smoking, with 'the game' on. It was the important game, the one that really mattered. I hated to ask, “What do you think, you know, about what I told you Lynn said, Aspergers; about what I've read to you about it?” but I did ask it.
I had to have a healthy diet, and mostly made things from scratch which meant there were a lot of dishes in the sink at all times. I dumped the last of the homemade chicken soup into the massive garbage pail, (with the purple stripe sprayed up the front where I couldn't bear to just keeping washing the crap off so I painted a streak over the crap) filled the crock-pot with water to soak, and sat in a chair alongside Howie. Easier to be alongside than to face him. I had to half-breathe, by partly hiding my mouth under my shirt-neck because of his smoke. I’d been holding my breath all my life. Nothing new. The sight of me doing this yet again, got him riled but I was bordering on ticked off myself. He hadn't given me any reaction whatsoever about my appointment with Lynn.
So I clung to Pralphdog, who nearly ruptured my insides, rebounding onto my lap, and I tried to get good breaths around the toxins of his cigarettes and asked him again what his take on the matter was. Without hesitation, (and I was surprised because I'd thought he was fully absorbed in the game and quite ignoring me) he replied in a melancholy tone without ever turning away from the action,
“I always knew”.
I studied his face a long time. His features swirled and mixed up.
Nothing much changed, except that Jeff graduated from high school. Howie told us to stand in front of the Maple tree. Everyone had one tree in front of their house, out front, a Maple. This made our little dead-end avenue more attractive. Every house was alike, save for the colors which were pastels and greys. Ours was grey vinyl siding, moldy on one side like everyone else's. We were living in the very same neighborhood I’d moved into briefly as a child. I wore my only black dress, and Jeff had on his black suit. As soon as we'd gotten home from the graduation ceremony, he had run his green cap and gown down to the basement and thrown it over some junk pile. We tried to lean, ‘family-like’, into one another for the photo- he at six feet two, and me five feet, eight and a half. The picture was snapped as we moaned and then the diploma, held in front of us for the snapshot was put away in a book.
Dan, my son's pro-bono advocate, e-mailed me to say he was disappointed in CT and he was considering relocating. As I read his e-mail, I thought back to the last time I'd seen him; my birthday. I'd been doing a green under-wash for a large self-portrait. I set down my coffee cup and accepted his news immediately. I wrote off a letter to my pen-pal Colin, leaving out the bits about Dan having come into our lives just long enough for Jeff to benefit.
The day that first manila envelope had arrived from England; I’d found inside of it a long letter like the ones I'd sent to Donna Williams. Colin had gotten my pen pal contact information from the autistic group Donna Williams referred me to many years before…years before Howie's devastating news of having the incurable ALS...Donna Wiilliams had met Colin as well. I was ensconced daily in Colin’s unique vision of the world. He couldn't put a hen in the cooker without writing me an email to let me know. He was in the process of completing the first autobiographical comic written and drawn by a person with Aspergers. The white red and blue envelopes on my entry hall floor, having been dropped through the slot with a thud, were a welcome sound. Often times I was treated to more than the intellectual stimulation I so craved: copies of his drawings and the 'comic-in-progress'. (It would go on to be published by Harvey Pekar of American Splendor. Harvey added a ‘u’ to 'Splendor' and made it ‘Splendour’ on the cover of the comic just because Colin was British. (Of course a movie was done years later about American Splendor and Harvey, but Colin was not mentioned as the story revolved around Harvey's plight).
The first phone call from Colin was surreal, and I asked him to speak slowly until I could grasp his Geordie dialect. Howie rolled his eyes and flipped through channels. I had a likeminded soul with which to share my diagnosis and he 'got it.'
I sat, knees up, on the floor with my back to the couch, twirling the phone cord and daring Colin to conform me to his beliefs. We debated lots of things. Sometimes I sat on the kitchen floor, in the dark, to tune out the game and the children and I challenged Colin to see my points of view. He sometimes did. When he did come over to my view, I could feel the gears turning in his head. He wouldn’t just say he believed me; he wasn’t any pushover. He was hard to win over. When I “won” a debate, I was dam well pleased.
With my back against the spray-painted-blue refrigerator (far too small for the growing family!) we recommended books to each other and I tried to give Colin romantic advice on how to approach various shop girls and such that he became enamored of. Of course I was no expert on giving romantic advice to anyone but being female was good enough for him even though I was no typical female. I was no typical anything!
And now I was diagnosed it validated so many things for me.
Like me, Colin didn't drive either. I learned about scotopic sensitivity syndrome; about poor depth perception; seeing the part and missing the whole. All those things, including a tendency to get lost- seriously hindered my ability to operate a motor vehicle. It was a stereotype that ALL autistics have a keen sense of direction. I knew many who did not! Also, for the most part a whole lot of us liked being called ‘autistics’ and not someone ‘WITH autism’. After all you cannot say someone is ‘with diabetes’. They are simply ‘diabetic’. Being an autistic means that autism is not something separate from ourselves. It is who we are. But I will defend anyone who says 'with autism' because it is their right to speak whichever way they see fit.
Fighting for my son's rights in high school, getting him a diagnosis and also supports was hard won. Here is the email I printed out from his advocate Dan (just before both Jeff and I went in for our testing with Lynn) and carried with me everywhere:
Thank you for writing back so quickly. This type of communication is very important in our work together.
I am sorry the school meetings are difficult, but I believe they are very important to your son Jeff and his future.
I believe fully that both you and Jeff have an autistic spectrum disorder. From what you have shared with me, it is something that you have lived with for your entire life, and everything supports that you have done a tremendous job of coping with the difficulties these disorders present.
Going to the school meetings are not to diagnose Jeff (or yourself) as having Asperger's Disorder, or any other autistic disorder. I already know that this is true. The meetings are to get the school to support Jeff in learning how to live fully as a person with this condition. Much of the pain, confusion and suffering you have lived with can be lived with in an easier way. It will not go away, but there are ways to live with it more comfortably.
By getting help for Jeff now (at the age of 17) from the school, Jeff may have supports in learning to live that you never got when you were his age. I feel that he deserves this chance, and it is by your bravery in facing these meetings that he will get it.
When we set up our next meeting (you and I), I would like to do some goal setting so we have a path to work on. Relationships, as a friend, is a good place to start. I'm glad you suggested that. Thank you for the comment about Ray. He is a very good person, and a good teacher. He knows a lot about teaching people how to overcome some of the challenges of autism in the community.
I'm glad things are going well, or better than they were. If you would ever like to schedule a family meeting with your mother, please let me know. It is often hard for a family to be supportive if they don't understand what it is that a person is living with.
Thank you again. I know I do thank you a lot, but I really am thankful for people who have the strength to reach out to learn about living with a very difficult condition. You are one of the strong.