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

Little Orphan Aspie is my homage to Little Orphan Annie, who first appeared in an 1885 poem, then a comic strip from 1924-2010, and a famous radio show in the 1930s. The strip started the year after my mother was born.
Instead of her dog Sandy, I have my cat Tika as a mascot. Annie had a UK counterpart called Belinda Blue-Eyes. Both were feisty girls who stood up to bullies. Annie’s innocence and desire for justice were often parodied, and they are traits I share with my avatar.

Born to Die Trying: Words are All I Have

I’m a chronicler, a savourer, a hunter-gatherer of words and sayings. Some are by others; some are by me; a few are about me.

A saying I wrote down in my teens came back to me the other day: “Life is a dangerous thing–people often die from it.” A little over the top, but then so was dancer Mikhail Baryshnikov, who had just defected in Toronto that summer of 1974, while on tour with the Bolshoi. None of us is getting out alive. This struck me during lockdown as I feel the urgency to get things done (like starting this blog.)

On March 25 I wrote this in my diary: We were born for this–born to shine in such a dark time as this. Again a little melodramatic, only it’s true.

https://www.youtube.com/watch?v=dGI9nHte9ic This song, Born to Try, by Delta Goodrum conveys my resolve to try and communicate love and acceptance.

All my life I tried to force things to happen. In my twenties, long before I knew anything about autism, I journaled, “Don’t try to engineer a new thing. God will give [you] a task when He’s ready. Be content to wait.”

On June 11 this year, a reflection by Choctaw elder and retired bishop Steven Charleston appeared in my feed, posted May 31. I quickly flipped open my journal back to March and gasped, as he confirmed my words.

“Now is the moment for which a lifetime of faith has prepared you. All of those years of prayer and study, all of the worship services, all of the time devoted to a community of faith: it all comes down to this, this sorrowful moment when life seems chaotic and the anarchy of fear haunts the thin borders of reason. Your faith has prepared you for this. It has given you the tools you need to respond: to proclaim justice while standing for peace. Long ago the Spirit called you to commit your life to faith. Now you know why. You are a source of strength for those who have lost hope. You are a voice of calm in the midst of chaos. You are a steady light in days of darkness. The time has come to be what you believe.”

It has taken decades for things to become clear, but I’m convinced that Nothing is Ever Lost. Three years after my diagnosis and a week after I spoke of my journey at my first major event, an adult autistic panel which John Elder Robison witnessed, my therapist wrote in farewell as she moved on from that clinic: about My Journey Out of the Fog:

You have taken courageous steps in understanding your differences, your desires for connection with yourself, others, and with God. Remember that you will radiate a bright light…You are a woman of passion and you use this passion to advocate for similar women. May you bring brightness into many other lives. April 2012

“How you gonna learn to walk? How you gonna learn to run? How you gonna learn to fly–until you learn to crawl?” Everyone Will Crawl, Charlie Sexton and Tonio K. 1995 “Running, loving, stumbling On My Way!” Martyn Joseph, 2010

I’ll be true to what I believe, even if I die trying. Tiny baby steps.

I Stim Therefore I Am

I Stim Therefore I Am

Artistic portrayal of someone stimming with purple hair catching the light, on a starry blue background. Permission granted from Hvppyhands

I must confess when I first admitted I was autistic, I didn’t use the word ‘stim.’  I insisted it was’ self soothing,’ although that is only one of several purposes.  I had so much internalized ableism that I was ashamed and tried to mask my habits: “Oh no, I’m not autistic when I’m alone.” I told myself.  When some gatekeepers interviewed a friend to vouch that I qualified for a medical study, she was shocked to be asked, “Does she flap?”  Err, no she maintained, completely unaware that I had many stims.

A good video to debate whether or not to be yourself and #TakeTheMaskOff is this one by Yo Samdy Sam:  https://www.youtube.com/watch?v=t9COmZ2HwXY&t=257s Stimming is discussed starting at 15:30.  It’s not by accident that most autistic women are armchair social anthropologists!

The research Samantha was responding to is here:  https://molecularautism.biomedcentral.com/articles/10.1186/s13229-019-0308-y

Of course, too much masking leads to anxiety and possibly to meltdown and/or burnout, but I was as yet unable to comprehend this.  I evolved upon reading the accounts and watching the videos of younger, more free-spirited advocates (some resources listed below.)   I was forced to admit that stimming was healthy and had its place.  Now there are celebrations like Stimtober and Day of the Stim.  Techniques that try to eliminate the stim are frowned upon.

I think I was scared of Yet Another Label, as I’d been rather weird all my life.  Almost a decade apart I received two radically different labels.  One was instantly believed, earning me sympathy and offers of support.  The other was hard to disclose and even harder to get acknowledged. 

I am not famous like Olivia Newton-John, the breast cancer survivor, or actor Daryl Hannah, who was believed when she announced she was autistic.  Olivia has continued to receive loads of encouragement and love, especially on the cancer’s recent return.

Both labels have affected my self esteem and raised my anxiety level.  What has this got to do with stimming, and why am I free to do it now, in my sixth and seventh decades?

Growing up and navigating adulthood undiagnosed meant I constantly studied others in order to fit in.  Things I did to calm myself–like humming, nail peeling and scab picking—or to ground myself like sitting with my feet curling around the chair legs, were not cool.

Some things were invisible, like chewing the inside of my mouth, or looking at light through a prism or kaleidoscope, or reading a book over and over again until its characters were old friends. 

Meme below by Yenn Purkis, June 23, 2018 on Twitter.

IHand twirling a fidget spinner on a blurred background.  Yellow lettering on a green backdrop says "For autistic people stimming can be a great way of managing anxiety.  Telling kids not to stim, or punishing them for doing so, means they lose a vital coping strategy.

Mostly I stimmed with music, snatches or earworms would run through my head, sometimes from the moment I awoke.  Of course, everyone jumping up and down at concerts is stimming, and no one pays any mind to it there.  I have to thank Agony Autie for turning me on to stim dancing.  This is A THING.

How odd that later in life, Daryl Hannah has married Neil Young:  I tuned to many of his songs, not typical fare for a twelve-year-old.

Love lost, such a cost Give me things that don’t get lost….

(Old Man, 1972 with Linda R and James T singing backup)

I can’t tell them how to feel—Some get stoned, some get strange

Sooner or later, it all gets real       (Walk On, 1974)

That one got me through a dreaded swim class and a chlorine-choking changeroom.

Or this sad lament of an absentee father, when my parents were fighting and I couldn’t make it better (as though that were up to me.)

You better learn it fast, you better learn it young ‘cause Someday Never Comes. (Creedence Clearwater Revival, 1972)

Then, thankfully, I spent many long hours at the piano, both in a deserted classroom and at home when I was supposed to be practicing my classical repertoire, picking out the latest Elton John or Paul McCartney classic.  I didn’t know yet what a broken heart was, but deep inside I expected one.

All I know of love is how to live without it, I just can’t seem to find itthe late great Karen Carpenter.  (Goodbye to Love, 1972)

I spent my first five decades on this planet trying to find out how to behave, Pretending to be Normal as the pioneering autiebiography by Liane Holliday Willey states (just had its 20th birthday—hurray!) So now,especially in this pandemic time, I can stim all I want—sit wherever or however I please, sing at the top of my lungs, play along with the amazing virtual mashups and concerts, stare at my painted fingernails, and dance like no one’s watching, because No One Is!

For further exploration:  Ask An Autistic #4  https://www.youtube.com/watch?v=WEB7nGvJt7I 10  minutes with Amythest Schaber

Many young people are reclaiming the term as a form of Autistic Pride.  More power to them.  Case in point is Agony Autie, who gave me back the joy of the stim:  https://www.youtube.com/watch?v=8bhT2R9HiLs She has several videos on her channel but this is short and sweet.

Erin Human’s redbubble store:  Great slogans!  https://www.redbubble.com/i/sticker/Stimmy-Happy-by-idrawhumans/28574227.EJUG5#&gid=1&pid=3

When I Knew I Was Different But Not Why

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.