Mary-Minn's Stim Page, October 2010

(Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.)

Who am I?

“Those of us who were so fortunate as to learn to talk and such were seen as “cured”, our autism somehow expunged. Having been “cured”, I was deeply embarrassed by my persistent difficulties with arithmetic, my social and physical clumsiness, my inability to overcome these challenges, as other kids seemed able to.”

I was one of the 10,000 kids diagnosed with autism in the 1950s. Back then, an autism diagnosis was a life sentence in an institution. My parents lacked the resources to raise me and my four siblings, so my grandparents adopted me from the time I was 3-1/2 to 7 years old. My grandmother created an early intervention program that presaged ABA and Floor Time, and, doubtless, other intervention programs.

She was able to get me into kindergarten. The teacher was interested in working with students who had special needs; otherwise, I most likely wouldn’t have been admitted. I think my academic success had a lot to do with the small size of the classes, from the time I was in elementary school through college. When I was a kid, I got individualized attention, even though IEPs did not exist back then. However, I was not singled out as disabled, as I probably would be if I were in school now. Instead I was treated by the same standards as my neuronormal peers. I resented my well-intentioned and probably kind-hearted third-grade teacher who bribed me with pom-pom birds whenever I had gone through a week or so without having “fits”, as they were called back then. I preferred being spanked for misbehaving to being singled out for more lenient treatment because of my disability. I so wanted to be seen and treated as “normal”, not marginalized.

There existed no records of autistic children having recovered from their autism enough to learn to talk and play with other kids. Perhaps this was because the diagnosis was so new that there was no history of prognosis. Those of us who were so fortunate as to learn to talk and such were seen as “cured”, our autism somehow expunged. Having been “cured”, I was deeply embarrassed by my persistent difficulties with arithmetic, my social and physical clumsiness, my inability to overcome these challenges, as other kids seemed able to. In my deepest heart, I knew these troubles stemmed from my autism; I just had to keep on making sure no one else saw this.

To the precious few in whom I confided about my autism, I referred to it in the past tense; it was always “I was autistic,” rather than “I am autistic”. My confidants either thought that I was making it all up, that had I been truly autistic, I wouldn’t be talking to them about it; that my autism explained my every character flaw and annoying trait; in the worst case of all, that I was using my autism as an excuse.

From the time I was in 7th grade, I devoured every book about abnormal psychology that I could lay hands on. To no avail, I sought descriptions of myself in Freud, Jung and, later, even B.F. Skinner and the Behaviorists. Schizophrenia was the closest I could come to my condition, and that was no cigar. I romanticized mental illness because I felt more mentally ill than neuronormal.

School was difficult for me but I worked so hard at it, and my vocabulary and grammar were good enough to pass for smarter than I was, that I was reasonably successful, graduating from college with a 3.45 GPA. Having graduated, I visited my elementary school teacher to thank her for being so helpful and patient with me. I asked my grandmother what I could do to repay her for devoting 3-1/2 years of difficult work getting me to walk up stairs, to talk, and to ask for things rather than snatching them or grunting She replied that I could help someone else struggling with autism. I didn’t know how to go about doing this except by telling my story. Much as I wanted to help fellow “sufferers” in a more direct way, I lacked the perspective on my own condition, let alone how to go about helping them with theirs.

Having graduated from college and needing to work full-time for longer than a few summer months, I thrashed around from one career to another, quitting or getting fired, finding my every job meaningless and unspeakably difficult.

In 1987, my future husband and I visited the University of Iowa. We were able to meet with Dr. Jennings, one of the younger psychiatrists working on the early autism study. He mailed me some of my records, which made things clearer for me.

In 1989, I read an article by Oliver Sacks about Temple Grandin, the first verbal autistic person I’d ever read about. In her struggles and coping techniques, I saw parallels to my own life. I read Donna Williams’ Nobody Nowhere, and felt vindicated that I was autistic, not just lazy and self-indulgent. I thought my own story was, in its own way, as triumphant and interesting as theirs, so I submitted a story about my life to Redbook magazine. It was rejected. I think they turned it down because it was boringly written and conceited in tone. At least, the rejection letter was not generically written. I was disappointed but also relieved. I was not ready yet to go public. Back then, I wanted to be famous, but I didn’t want to be famous just for being disabled.

The autistic literature became more plentiful in the ‘90s. I read books that were self-promoting, such as Barry Kauffman’s Son Rise; inspiring stories such as Dibs in Search of Self by Virginia Axline; neurological articles in Science News about atrophied cerebella and bad coordination, amygdala differences that exaggerated flight-or-fight responses. I still kept mum about my condition, though.

In 1996, I heard that the son of one of my co-workers had just been diagnosed with autism. I didn’t know her very well but was conceited enough to think that telling her that I am autistic would reassure her that perhaps her son might grow up to live a normal life--that he might live on his own, get married, and whatnot. Her mouth became o-shaped, she took a deep breath, her head pulled back, and she did a double take. Everything contradictory about me came together for her. She had always thought I was “different”; now she knew why. Though I swore her to secrecy, I am pretty sure the secrecy was too much for her to contain. Shortly after that, my supervisor, whom I didn’t get along with, asked me why I was reading Temple Grandin’s Thinking In Pictures. I told her, probably less than convincingly, that I was interested in consciousness and the mind. I got fired a few months later. I think that divulging my autism did not help me hold on to that job.

I gradually became more open about my autism. I started out by telling alternative practitioners such as massage therapists about it. Besides my husband and my grandparents, these practitioners were the first sympathetic people. My vanity felt gratified when they showed amazement that I was, in so many words, so high-functioning. I told my best friends about it; some thought I was exaggerating, even making excuses for having such a hard time on the job. That ended one friendship for me.

In 2000, a massage therapist introduced me to KindTree. I was not willing to reach out by myself. What if they thought I wasn’t autistic enough? I still thought that autism comes in degrees, that it is possible to be less autistic or more autistic. I hit it off immediately with the KindTree folks. I was surprised that they didn’t question my autism. I didn’t realize back then how blatantly autistic my mannerisms really are or how accepting and non-labeling they are.

The board of KindTree invited me to talk at their upcoming Autism Retreat at Cedar Hill Retreat Center in Deadwood. I was terrified of talking to a group but thought that I could perhaps be a positive example for people on the spectrum and people with kids on the spectrum. Even though my presentation was halting, hesitant and stuttering, people were interested in my story. I met fellow autistics across the autism spectrum and saw traits and mannerisms in common. People on the spectrum are as different from each other as people across the neuronormal spectrum or across racial and cultural lines. There is a cultural similarity, an autistic “vibe” that makes us recognizable to each other, even if it’s not recognizable to people unfamiliar with autism.

I came out as autistic with the moral support from KindTree people and my husband. Otherwise, I would have felt too vulnerable and exposed. I started out in my self-discovery and disclosure by comparing my high level of functioning with others’. Though I was terrified of public speaking, I loved the opportunity to “inspire” others with my story. I didn’t understand yet how every autistic person is high functioning in some areas and low functioning in others. This is true with everyone to some extent but a defining characteristic of autism. Just because someone speaks in a singsong doesn’t mean that they can’t drive a car or program computers. Someone can be socially adroit but unable to ask someone to do something. Someone can have a hard time processing oral information but be an excellent writer.

I knew that autism is a lifelong condition but, all the same, wanted to make sure I wasn’t using it as excuse, as a friend of mine had accused me of doing. I became obsessed with the diagnosis and how I fit into it. I read up on it. My talks, with all their bullet points of diagnostic traits, facile jargon and recommended interventions, must have been boring.

In this period, I found myself identifying almost solely with my diagnosis, inadvertently acting it out almost self-indulgently. I talked about little else but my autism. My life had gone from ignoring and denying an important part of myself to ignoring and denying just about everything else about me.
Meantime, I saw in other people’s generalizations about autism traits that I didn’t see in myself: the nerdy and computer-savvy stereotype, the inveterate loner who doesn’t socialize well, the person who thinks in pictures and not in words.

I started to compare myself to the others. I felt like a dilettante, rather than the single-minded genius that others associate with being autistic. I felt a bit lost with respect to my identity. At this point, I didn’t want to return to being a defective neuronormal person.

Meantime, my career had evolved to working with people with disabilities as a teacher and service provider rather than working around people only as colleague and customer service provider. True, a few of my co-workers became lifelong friends of mine, but there were as many co-workers who found me annoying. I had always known that, like most people, I worked best with the people I was serving and had the hardest time with co-workers and, especially, supervisors. I thought I was unique in finding supervisors and co-workers more difficult than customers.

Working with people with disabilities gave me a perspective onto my own disabilities and abilities. Seeing guests arrive at our retreats looking anxious and autistic and then seeing them having fun at our retreat, I noticed that the line between autistic and non-autistic started to blur. Perhaps this is partly because parents are often somewhere on the spectrum, but I think it’s mostly because a person’s diagnosis fades away as one gets to know and become fond of that person.

I never got into much of an “us” and “them” mentality, between autistic and neuronormals. I think this is because I still spend most of my time with non-autistic people, on the KindTree board and in my various joblets.

For the past few years, I have been fully convinced that I am autistic, so I don’t need to castigate myself for making autistic faux pas. I don’t feel like an autism expert but rather an autistic individual.

Mary-Minn Sirag