When I Knew I Was Different But Not Why

Graphic which shows someone twirling their hair in a self stimulatory way (stimming)

updated from 2012
(At this point there was no ASD diagnosis, just Asperger’s, Kanner’s autism and PDD.)

Most of my childhood in the 1960s and 70s was spent in Oakville, Ontario, a suburb of Toronto, Canada.  I was a quiet child who craved alone time.  Away from my normal routine—in someone else’s home, at swimming lessons, on camping trips, at someone’s cottage, on a school outing, I didn’t know how to behave or interpret people’s words accurately.  John Miles sang “My music pulls me through” and I coped by spending hours listing the songs I’d heard on the radio, and, with my perfect pitch, playing them repeatedly on the piano by ear (this started by age 4.)  I also taught myself to read which I found out later is part of hyperlexia.

It wasn’t just that other people in Oakville had more money and nicer homes:  they seemed to get along and make conversation, whereas my existence ran parallel to theirs.  It was like being in a fog that I couldn’t penetrate.   Even when people tried to reach out to me, I didn’t know how to respond.   I was an easy target for bullies as I cried easily.  It didn’t help that I was in an Enriched (gifted) class for four years and had to ride the school bus by myself.  We had intellectually challenged kids in another wing of the school, and I lived in fear that someone would realize I should be with them.   

At recess I stayed by myself, listening to my transistor radio and singing to keep my hope alive.   Some of my classmates were kind and didn’t tease me.   Chris Hadfield the future astronaut was one person I remember who talked about music.  The late Irene Wedeles was a wonderful teacher but she also terrified me when I couldn’t please her.  

Summer of Grade 6-7 (1971) was the first time I wanted friends badly.  There was an overnight camp to Rattlesnake Point and a disastrous week at United Church camp in 1972, when I was both extremely lonely and shunned.   

One summer at a family camp I met my first pen pal Barb, and we stayed in touch throughout high school.  In Grade 10 Annette befriended me and welcomed me into her circle.  The significant thing is my best friends CHOSE ME.  They still do.

When my parents’ marriage fell apart for the second and final time, I leaned more heavily on these friends, and started my faith walk which continues to this day.   Although I had nightmares about getting lost at school (my secondary school had 1300 students then), I did well in my studies and private piano lessons.   I won the county German award and several scholarships in Grade 13, edited the yearbook and got my Grade 8 Piano.    There was no individualized planning or transition laid out for me, so university was a big shock.  In 2019 I figured out I have inattentive ADD and dyspraxia, both of which make study hard.

I had several mentors in my life as a DJ, cycling advocate and musician, the best known being canoeist and filmmaker Bill Mason, who invited me to the premiere of Water Walker in Montreal.   Eventually I got my Journalism degree with a C+ average.   Leaving the reporting course marks out (where I had to communicate) made my average much higher.   Still, I felt I had no chance of being accepted in a Master’s program.  I had an unforgettable summer studying and working in Germany, but nothing planned after that.

The two years after university in the early 1980s were some of the worst of my life.   I moved over ten times, did all sorts of jobs but had no career path.   Then, because of a book I wrote on a summer grant, I was hired for a contract in cycling safety, and that became my passion and full-time career for nearly a decade.  As a volunteer radio producer and host for 22 years, I met many musicians I admire, including Bruce Cockburn, Iona, Sam Phillips, Amy Grant, Mark Heard, Mike Roe, and Terry Taylor.

When I was terminated after my longest job (7 years) in 1992 the bottom fell out of my world.  My mom had died a few weeks earlier which added to my situational depression.

The search for healing and wholeness would take many years.   I have had over 40 job titles, paid and unpaid.  I separated from my husband in 2006 after 21 years.  One day in early 2008 I read an article “The New Autism” in WIRED about Amanda, later Mel Baggs+, a non-speaking woman who writes brilliantly via her computer. This sentence changed my life:

“[Laurent Mottron’s and others’ studies] have demonstrated that people with autism spectrum disorder have a number of strengths:  a higher prevalence of perfect pitch…and various superior memory skills.”  The conclusion was that my brain was different, not damaged.  My quirky way of systemizing and recalling pitches without an instrument was an islet of ability, which I now equated with Asperger’s.

I looked for months for a doctor who would assess me—they only saw children.   In the summer of 2008 I located Dr. Catherine Mann, who spent three sessions with me in the fall before coming to the same conclusion—mild AS (she was using the male questionnaire—with the new Kopp & Gillberg ASSQF criteria I would present even more strongly.)   From the day the light went on to the written diagnosis took a whole year, an unimaginable torture waiting to find out I’m not crazy.  However the wait was worthwhile. 

“…all the behaviour necessary for a diagnosis is there, all the struggles to cope with life are there, but you may be so good at masking all of this that diagnosticians have to be very experienced and knowledgeable about women on the spectrum to pick up the AS.  Unfortunately, most professionals are not sufficiently expert and may miss the AS altogether or diagnose something else.”  Chapter 5 Asperger’s Syndrome for Dummies.   

Despite knowing since 2008, I still find little help for women who have fallen through the cracks like I did—we women born before 1975* are the research orphans who were born too soon, who had no kids or else had them prior to DSM-IV, who have lived lives of quiet desperation.  We lose our jobs without knowing why, can’t hold up conversation and blame ourselves, submit to abusive relationships rather than not be in one, and the list goes on.  

Autistic women are some of the bravest people I know, and the undiagnosed ones don’t even know how brave.  

*Asperger’s for Dummies (UK, 2011) points out in Chapter Five, Understanding Asperger’s Syndrome in Women:

“Understanding women and autism spectrum conditions (ASCs) is where a lot of progress is likely to be made over the next few years.”  In her foreword to the book, Dr. Judith Gould, a pioneer for over 40 years in the field  and the director of the Lorna Wing Centre for Autism in the UK, writes:

“Clinicians do need now to move away from just considering the male-dominated descriptions of Asperger’s syndrome and embrace the differences between genders, particularly if they are to support women and girls in effective ways.”

+Sie died of respiratory complications during the COVID-19 pandemic at the age of 39, on April 11, 2020.  I owe hir a great deal.