Nothing useful was known about autism until the late ‘90s, so I had no framework for my problems. I suspected strongly that my social obtuseness, breakdowns and poor coordination had something to do with my autism. I did not know the cognitive ramifications, though.
When I read about Temple Grandin in 1989 in Oliver Sacks’ article in The New Yorker and in his Anthropologist on Mars, I learned for the first time that there existed another verbal adult with my condition who, as a child, had been as affected as I had been. Other than sharing the same diagnostic label, however, Temple and I are polar opposites, so I gained little insight into my own cognitive style. Still it was a beginning.
In 1990 I submitted a query to Redbook magazine about my story. They answered my query but turned down my actual article, fortunately. Even worse than having my name attached to a soggy piece of writing would have been the national attention, back when a verbal adult such as myself would have been seen as exotic. Relieved, I accepted my rejection as something that was “meant to be”. It wasn’t until the past 5 to 10 years that adults started to get diagnosed, after years of struggling to pass as “normal”.
The only information about autism I could lay hands on in the early ‘90s were short abstracts in Science News about autistic brain anomalies such as atrophied cerebella, and first-person accounts by parents such as one who supposedly cured his autistic son and went on to start a home therapy program to help other parents cure their kids. There were also some stories about savants that didn’t apply to me. Later on came Donna Williams’ beautiful and awe-inspiring first-person accounts, Nobody Nowhere and Somebody Somewhere, which, in retrospect, didn’t describe the insidious and pervasive learning deficiencies I was grappling with and couldn’t quite put my fingers on.
It wasn’t until 2000, however, when I ran into KindTree quite fortuitously, that I embarked on my own intense journey of discovery. Tim, Steve and Michelle invited me to present my story at the 2000 Autism Retreat in Deadwood. This was the first time I met other diagnosed adults autists in person.
The Retreat was a watershed event for me in so many different ways. There I tackled a crippling phobia of public speaking. Whenever my consciousness drifted out of my body and I forgot where I was in the story, Steve brought me back to terra firma with concrete questions. A nonverbal woman sat down beside me, gleaming like a cat.
I was pleasantly shocked by how impacted people were by my long and wooly talk. Starting at age 18, I had wanted to help others affected by autism but hadn’t known how to go about it.
The Retreat ripped my heart right open. It was almost unbearably poignant for someone like me whose most common emotions were reactive ones such as anxiety, frustration, resentment, rage, relief and terror. My tough emotional defenses gave way. I cried all the way home with joy. I had chills down my back for over a week. I had met my tribe. I felt a catharsis of relief and gratitude that there were others like myself and loving people to support them.
I found in Tim, Michelle and Steve kindred spirits and I threw myself into volunteering for KindTree. They invited me to join their board of directors.
I started to enjoy the higher sense of purpose and community I had been seeking desperately all my life in so many ways but couldn’t articulate. Along my happy way, I acquired a gang of people to pal around with, a group of friends who actually liked each other.
I began my complicated emotional journey by comparing my level of “functioning” and personal history with fellow autists. When were they diagnosed? Did they go through special education? Did they cut themselves when their computer was unpredictable or couldn’t find something? Did they drive on lockstep arterials? How did it feel to them to be autistic?
I started out by asking these questions quite baldly. Often they were taken aback. Either my question was too personal or they saw no need to over-analyze it as I did. I realized that I needed to be more oblique in my investigations. Only as my questions became less urgent and my interest less clinical did fellow autists start opening up.
At one point, I started to question whether I was even autistic because I enjoy “so many” of the luxuries of being non-autistic, such as living in my own house, being married, making a living, and driving a car. My mannerisms felt less autistic from the inside due to a stereotypically autistic lack of perspective.
At the same time, I identified more with my autism. It filled in so many blanks, including problems that had nothing to do with my autism, such as a difficulty interpreting or following directions. At this point, I clung to my diagnosis, preferring to be a “high-functioning” autist to a deficient non-autistic person. (Go to page 7)
(From page 2) For a while, in my journey of self-rediscovery, I found some of my autistic behaviors worsening, as though I was indulging them. When I noticed this, I left off in my self-taught behavior modification.
Starting in second grade, I had been observing myself closely from an analytic and self-criticizing third-person perspective. Always one to become obsessed initially with whatever psychiatric and medical condition I had just been diagnosed with, I absorbed the jargon. I researched diagnostic criteria and inventoried my own symptoms. I met Steve Edelson through friends with an adult daughter who experiences autism. Steve hired me to write the online index for Autism Research Review International, which satiated my morbid curiosity about etiologies and treatments.
At first, I was eager to share my personal story with anyone who asked me to talk to their group. That evolved to my wanting to share—perhaps to show off--my erudition of the diagnostic fine points, using personal vignettes as case in point. Over time, having binged on all this pathology, I wanted to talk about difficult areas, especially employment, which has been a path of fire for me.
At the same time, I was taking on more leadership responsibilities and pushing myself to the limit in my involvement with KindTree-Autism Rocks. I bumped up against skills and abilities I lacked that I thought –or wished—I possessed, and a few that I didn’t know I had. For instance, I discovered that I am not socially agile enough to coordinate or supervise people. I am brusque and impatient when people’s feelings get hurt, for seemingly no reason. I lack the executive ability to make snap decisions with too little information. I am awkward and apologetic when trying to persuade others to do things they don’t want to.
I am now recognizing these shortcomings and starting to understand the cognitive and neurological causes. I have found myself nurtured by people with experience in supporting people like myself. For the first time, I ‘m not afraid to let people in on the dank secret of the plethora of seemingly simple things I cannot do. I no longer am made to feel inadequate and lazy.
I am encouraged to advocate for myself! The only challenge remaining is to be self-aware enough to recognize what I cannot do and not to punish myself and people around me by soldiering on. I need to be courageous enough to recognize and admit what is beyond the reach of my ability. I need to advocate for myself in a way that is kind without being resentfully apologetic and an over-explaining. In so doing, I am learning to disagree respectfully and be more assertive.
Through my contacts in my new community, my career has taken an unexpected turn from working around people who don’t necessarily like other people to working with people who actually are people-people and with like me who experience disabilities. I came into this field with no education or background in special education besides figuring out how to accommodate my own eccentric learning style, using tools I have rigged up for myself willy-nilly. I am discovering empathy, something I had been told over and over again that I don’t possess.
As a college art major, my focus was figure drawing. Afterward college, models were hard to come by and I stopped doing art. My synesthetic brain links color and texture up with my non-visual senses; still, I had never studied color, design or painting, until I started teaching painting and beaded jewelry through Eugene Parks and Recreation’s Adaptive Recreation Program. KindTree-Autism Rocks displayed and sold my art, which in my mind has made me an actual artist.
These Stim Pages I’ve been writing for the past 14 years have given me an opportunity to tell my own story, hoping to help readers gain insight into some of what they or their autistic loved ones are going through. Getting my story out and working through it by writing has been therapy for me.
Over the past year or so, it has gotten increasingly difficult to come up with new insights and stories. The low-hanging fruit has been plucked and my last Stim Pages have felt repetitive to me. My story has become less interesting to me. It is time to pass the torch to a new generation of autists who have a story to tell. I, for one, am looking forward to what they have to say.
Mary-Minn Sirag, KindTree Productions Inc. President
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