On Living With Autism
by Mary-Minn Sirag, October, 2000
(Ed. note: this is Mary-Minn’s very first STIM page article, before we called it a STIM Page. Go HERE for more Stim Pages)
I am basically a textbook autist. A stoical and aloof baby, I lost speech and regressed at about 18 months. I was diagnosed when I was a little over 2. When I was 3-1/2, my IQ was measured on several tests at 68. I sat up when I was almost two, learned to walk when I was about 4, and started to sputter words at 4-1/2 years.
Through a series of difficult but fortunate circumstances, I was mainstreamed through school, college and work. I “swore off” off autism when I was about 5, and pretended to be “normal.” Until I was about 11, I was fairly oblivious to pain, and often could not tell the difference between being sick and well, let alone how to articulate it. I was sick a lot.
I developed social skills by imitating people I admired or envied; then, by studying behavior. This was analytic, not instinctual. Throughout my life, I have been watching myself from several angles, including how others are perceiving me. I watch myself from outside, as well as inside.
As an autist, I have been preoccupied with the concept of “normality,” as in “what is it?” I gave up being normal in my early teens but continued to be fascinated with the idea. I have developed a fair amount of empathy by trying to understand non-autistic being. I spent the greater part of my 20s checking out society’s underbelly, testing and examining society’s ideas of evil and flouting danger.
I started reading abnormal psychology books in 7th grade, starting with Freud’s case studies on hysteria. I read these books, hoping for some kind of expiating insight into my condition. Eventually, more people were writing books on autism, which I devoured. Pop-psych books are my favorite junk reading.
I am more a conceptual than procedural learner. For instance, I found trig easier than long division and double-entry bookkeeping. I have an aptitude for foreign languages and alphabets, perhaps because they have no procedures, just fairly well-defined rules and patterns. I am flummoxed by dance steps and complicated game rules. I do better improvising.
I am terrified by suddenness. The sound of a siren or a jackhammer penetrates my central nervous system directly, almost bypassing my ears. I freak out when I fall, drop or spill something, am confronted with something illogical to me, am confused or overwhelmed. I think my razor sharp reflexes are partly a compensatory mechanism. I often catch things, and myself, in mid air.
I am synesthetic, blending smell and taste with color, and sound, to a lesser extent. I have a “photographic” memory for taste and smell, but am quite aphasic visually. I remember a conversation but not a face until I have met a person several times. I learn kinesthetically, from the inside rather than through observation.
It has taken me decades to learn to multitask, which I do, more or less, by dividing tasks into many small sequential ones. I do better with one final deadline I can maneuver around.
I need rules to be explicit, since many social cues often elude me. I read people poorly and can be slow to react, especially to something emotionally charged. I am more perceptive with the written page, and speak less cogently than I write.
I sometimes confuse small-talk and conversation, and can be obtuse about distinguishing between being helpful and meddlesome. Bemused by such subtle put-downs as “interesting,” I am constantly parsing clichés for their real intentions and origins.
Although I have developed an excellent work ethic, it has come slowly and with difficulty, through assiduous philosophical and ethical analysis. I question rules and social constraints until I understand how I’ll benefit or affect the “common good.” Being entirely self-motivated, I work better with loose boundaries than tight ones. I am leery of authority, including my own.
My freakouts feel more like seizures than temper outbursts. They frighten people until they learn that, left alone, I recover quite rapidly. SIBs help me release the electrical rage I feel without hurting anybody or anything. I recently weaned myself from head-banging, but I still bite, hit and cut my arm.
I try to avoid raising my voice, as the consequent rage erupts into blinding anger. I do not indulge in road rage, not even swearing under my breath. Although emotional, I try to avoid expressing heavy emotions. I try to forgive or rationalize whatever wrong I see but cannot change.
I have spent much of my life figuring out where I “come in,” afraid of being “found out.” Only after I discovered Kind Tree this summer have I started to “come out” with my autism. I consider my life after 4 years old to have been a reincarnation back into an abandoned vessel; then, a reconstruction of all that was lost during that first failed attempt before I jumped ship.
Mary-Minn Sirag is a KindTree Board Member (2000 – 2018) and free lance journalist.