As I described in yesterday’s post, I recently came to understand that I have lived with undiagnosed Aspergers Syndrome for 51 years.
One of the first things people in the Autism community ask, especially as so many of us are arriving at the diagnosis as adults, is “Were you diagnosed or did you self-diagnose?”
I find this curious, but understandable. As an adult, you either identify with ASD or you don’t. For the record, I fall into the “self-diagnosed with professional concurrence” category.
One of the very first things I did after drying my tears and wrapping my head around the possibility that I could be reading about myself was start a Google doc…which became several Google docs. (I do great lists, charts and patterns, of course.) I took the profile that had spawned the buckets of tears, copied it into a document and started highlighting the bits that described me. I needed facts.
The results were impressive. No matter where we are clinically in defining Aspergers in women, especially older women who have relentlessly adapted all their lives, there is no denying the way my pages looked. They were 80% yellow. Several of the 9 pages were fully yellow…as in every line of that page or topical section described me.
Of course I next had a desire to gain a professional opinion on what I had come to know about myself over several days of reading. So after talking with my mother – who was surprised beyond belief and admitted that this new way of looking at Aspergers in adult women was news to her – I called a professional therapist I know.
I’m extremely lucky to have a family friend who has known me all of my life that is a gifted therapist. Not only have I known this wise woman since I was a kid, I worked with her daily in high school one year (she was the high school guidance counselor) when I sought refuge from the friends who were bullying me and worked in her office as a student assistant. Over the ensuing years she saw me off and on during every personal upheaval – childbirth against medical advice, life choices against family advice, divorce, and health challenges. She’s been a witness to the storms of my life.
I found it rather interesting and completely ironic that I have known this respected educator on neuroatypical personality types for 40 years – and even more importantly, I was raised by a loving and attentive mother who is a much beloved expert on special education and learning differences in my hometown, and yet the idea of ASD or neuroatypical wiring simply never came up before. This is truly a sign of the times we live in. We’re just figuring this issue out.
In my case, as in many, many of the cases I read about online in other blogs and in the books I’ve found giftedness overshadows cognitive difficulties. And the ability to mimic and blend in socially corresponds with a hyper-empathy that at first blush seems the antithesis of the accepted lack of social empathy that so many assume is a part of the profile. Both on a gut level as an observer, and now in my own life I agree with researchers like Tania Marshall and my friend, Karla McLaren who propose that those on the spectrum are actually highly empathic.
These are also signs of the fact that I had very healthy emotional hygiene modeled for me. I was encouraged to and I developed the ability to believe in myself no matter what, and to deal with life as it came. No excuses, just solutions. When I was bored in class we simply found a solution. When bullying made me miserable, I left school for broader horizons in college. And I take this same approach with my own children. What do we need to do next?
So how am I sure that I fall into the Aspergers, or more accurately, the autism spectrum? I may have to write a book the personal evidence is so huge. I share not from a place of self-indulgence but in the hopes that maybe my posts will help someone else like the posts I read helped me.
Here are some highlights:
Growing up I was the family’s human phonebook. If I called a phone number once it was committed to memory. Numbers for everyone in my social clique to my mom’s best friend to the number for the corner store were effortlessly recalled. Ditto with color. This came in handy both shopping with my mom (“Allison does this go with that red blouse I just bought?”) and with design clients in my first career as an interior designer. I just “knew” color. I never carried color swatches. Yet on installation day everyone was blown away at the matching and subtle blending of shades I had selected over several months. Although my memory is pretty seriously compromised these days due to menopause and chronic pain I still surprise the employees at doctors’ offices and drug stores when I recite the number and security codes for the credit card I simply don’t need to carry.
I knew I had learned to read early and had to find alternate activities in school beginning in first grade while everyone else was learning their alphabet. But I never really gave it much thought. Later in life I always tried to forget my giftedness because it seemed to be something that set me apart from other kids. I had not heard of the term “hyperlexia” until I started reading up on Aspergers. After asking my mother, a lifelong educator who easily recalled how and when I did it, the full memories came flooding back of my “figuring out reading” by matching the pictures in books and memorizing the shapes in the church nursery at age 2 or 3.
In grade school my grandmother announced that I would be taking piano lessons the day she bought me a piano. I found it a lot of fun and interesting to play with as long as I was left to my own devices. I could listen to tunes and pick them out matching the relationship between sounds. Imagine my surprise when my piano teacher forced me to stop doing this and learn to read the notes on the paper. This was just too hard for my brain to do. Translating the pictures on the page to a corresponding hand position sucked. So I was finally allowed to quit after begging for two years. This experience didn’t keep me from learning to play four instruments in junior high and becoming an award-winning bassoonist. My high school band director stopped speaking to me when I announced to him in the 10th grade that I was leaving high school early to start college when bullying made my life miserable. I just didn’t have time for all the activities he wanted me to undertake in order to become a state-honored musician. And I never looked back, unfortunately; however, even today when I listen to Mozart’s Concerto in B flat for Bassoon I can still finger certain passages. It will always make me happy to listen to this piece and remember the love of music that consumed my life until I was 16.
Hyper-empathy and intuition
For a long time I’ve seen these appreciated parts of myself as aggravated by, if not the result of, my near death experience in 1985. I realize when I’m honest with myself that the truth is that I’ve actually been this way all of my life. This coupled with a habit of being transparently honest about everything – even as a child – led to some of the most painful experiences of my life in adolescence before I learned to better censor what came out of my mouth. It’s not all bad. It’s handy to know who’s on the phone before it rings or when a kid is lying to you.
Hypersensitive hearing, smell, skin, & sight
Acute hearing can come in handy for musicians. But when you’re hollering down the stairs at teenagers even when they have the video game practically muted it can be a constant family irritation. It’s also a curiosity that my acupuncturist had to turn the music down almost to muted not to hurt my ears when relaxing during my sessions. It’s literally painful for me to put on headphones after a “normal” person and have the music come on with the “normal” setting of the last patient blasting in my ears. All my life I’ve been looked at funny when I mention horrible buzzing or sounds that other people don’t hear. Nevertheless a TV turned on behind cabinet doors or fluorescent light left on in another room is always found to explain it. Then there was the time I almost came to blows with an employee of one of my clients over the electrical burning smell in the 100 year-old building we worked in. She insisted I was making a fuss out of nothing anyone else was bothered by. The electrician that found an electrical box on the verge of exploding from melted wires and overheating said I saved the building. I could go on…like the time my neurosurgeon’s light touching of my skin with a pin to test neurological response drew blood.
Acute separation anxiety
As a child – even as old as middle school – I got deeply depressed and even physically sick on occasion when I tried leaving home to go to summer camp. Literally petrified by the experience I was compelled to keep trying it to be like my friends. Yet I just couldn’t cope in new surroundings. There were just too many things to process and to figure out. Feeling like a skydiver without a parachute, I just didn’t feel safe. My parents were called to come get me on several occasions.
Skilled at mimickry
This has become one of the most puzzling things about myself. Even today. I feel like an absolute chameleon inside. As if I might not be anything at all without a mirror. Even as an adult my kids have made fun of me for adopting the speech and accent of the person I was talking to without realizing it. I really have to watch myself. In many ways this is a positive. When needing to adapt to a client or child’s needs, for instance. And when scrambling to learn twirling because all my fiends were trying out for majorette in junior high it came in handy. Right up until the time it was obvious that I had to watch one of them and not the teacher facing us to get the drills. When I appeared good at what we were doing quickly the band director wanted me to become the drum major against several friends who had been practicing for years. My lack of confidence with something so new and the chaos when new steps came too fast became my social death warrant. It was the straw that broke the camel’s back of the healthy social acceptance I had enjoyed in elementary school.
Samantha Craft describes this trait perfectly on Everyday Aspergers:
Being with others confuses me. I am often giddy and overcome with joy when I first engage with an old friend or new friend. I laugh a lot. I take on my friends mannerisms and way of being. I become less of a me I know little of, and more of this other I seem to suddenly understand a lot about. I am a sponge of sorts, soaking up what is in my immediate environment. Empathic, perhaps. Psychic? I don’t know. It almost seems biological at times, as if I can feasibly metamorphosize not into butterfly from caterpillar, but from one shape I had adopted to the next before me….To watch myself as observer morph and remorph is both baffling and disturbing. I long to simply be as stagnant one not taking on the persona or emotions of another.
This is just the tip of the iceberg. Like I said, I could write a book – the Google pages are up to the dozens.
In general, as far as feeling different, I’d say I’ve always simply thought of myself as living life juicy…as someone that goes ALL IN with life. I always attack what I’m interested in with a zeal that the average person around me doesn’t seem to possess. Of course, this makes clients happy when you’re a consulting professional. Yet it can get grueling inside my brain at times. This line in Liane Holliday Willey’s Pretending to be Normal: Living with Asperger’s Syndrome literally jumped off the page at me:
“I end up spending far too much time selecting which word to use and too much time reworking a sentence so that it looks and feels and sounds just right.”
(If anyone had a way to see how many times this post has been edited and re-edited I’d be in trouble.)
Oh, here’s another good one: I’ve been accused of being “too serious” my whole life, too. If I had a dollar for every time I heard as a kid or young adult, “Smile young lady, life’s not so bad!” I could retire to a tropical island. This is apparently a really Aspie thing. I think I’m minding my own business walking down the hall or street concentrating on the next stressful social interaction I’m about to have and some teacher or passerby thinks I look socially unacceptable. Arrrgh.
So obviously the above list of traits or hints is just a small portion of the mostly positive, happy parts of my new realization. Yet it was the instantaneous bodily realization of the cumulative underbelly experiences of being neuroatypical that have been a constant part of my life that must have unsettled me the most. Could Aspergers explain the off and on bullying in junior high and high school, an identity crisis and educational difficulties for the first time in my life in college, date rape at 18, a sexual assault in my twenties, and feelings of isolation or being different in some way all of my life?
I seriously used to feel as if I was from another planet and was deposited here by mistake or as some punishment that I had no control over. In fact, when I moved to Austin from my small hometown in East Texas 5 years ago I began telling people I’d found my “mothership” because of this lifelong reference. Imagine my shock when I found a huge sea of references to this feeling when researching autism and Aspergers. There’s even a highly popular online community devoted to ASD called Wrong Planet.
Of course it would be really interesting and perhaps even a bit reassuring to get a full battery of tests and a freshly minted clinical label. Especially now that my cognitive abilities are changing due to age and I’m more baffled than ever at certain tasks. Yet with the limits in our understanding of how a lifetime of adapting can affect diagnosis, the prohibitive cost of testing, and yes, my age…it’s not likely. And honestly, it’s no big deal.
When I consulted my therapist friend about my suspicions she didn’t bat an eyelash – metaphorically, at least, we were on the phone – when I told her I had tested as being on the cusp of the Autism Spectrum on two tests I found online and right smack in the middle of the range for “high functioning or Aspergers” on another. Her next question:
So now that you’ve identified your style of being in the world as that of someone with Aspergers what do you think needs to change?
That was an easy reply. “Not a damn thing.”
Photo :: Post illustration created from a Creative Commons photo.