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. 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: 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:

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 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: She has several videos on her channel but this is short and sweet.

Erin Human’s redbubble store:  Great slogans!

What is Late Diagnosis? Part 2 of 2

Over nine years ago I began compiling this list (I love systemizing things!) about two years after my own identification. It’s time I got some feedback: this is a work in progress. Comments on Twitter would be appreciated–I know these are mostly US and UK adults. It’s pretty clear that females and nonbinary individuals tend to get assessed later. I cut off at 1980, because it has gotten easier since then, as awareness has increased.
I know the list could use more POC and other nationalities. I hope to do some profiles of people included. They are fascinating and very different. What interesting company we keep!

Pictured is Sir Anthony Hopkins, diagnosed on the autism spectrum at age 70.

It is better to know late than not at all. #StillAutistic #AutisticElders #LateDiagnosed

NameBornDiagnosedEst. AgeMain Endeavours
Anthony Hopkins1937200770Actor, artist
Jim Sinclair19401980s40Autism rights activist
Leith McMurray1946200558Musician/counselor
Temple Grandin19471950 3Scientist/author
Nick Drake*1948N/Ad. 1974Guitarist/English major
Jerry Newport1948199547Author/speaker
Dan Aykroyd1952200442Actor/comedian
David Byrne1952201260Writer, founder of Talking Heads
Wenn Lawson1952199442Psychologist/author
Tim Page1954200045Author/professor/music critic
Mary Meinel Newport1955199337Actor/speaker
Martine Stonehouse1956200155Transgender and labour activist
John Elder Robison1957199740Inventor/author/advocate
Gary Numan1958197921Rock performer, The Cars
Jessica (Elly) Park1958childhoodSubject of 1967 book The Siege, fine artist
Dena Gassner1959199938Professor, author, activist
Liane Holliday Willey1959199637Author/autistic mother/advocate
Daryl Hannah1960childhoodActor, environmentalist
Susan Boyle1961201251U.K. performer
Michelle Dawson1961199231Canadian researcher
Chris Packham1961200544Naturalist/TV presenter
Eva Cassidy*1963N/A d. 1996Guitarist/singer
Gunilla Gerland1963199229Swedish author/activist
J David Hall1963201956Founder of NeuroGuides, parent, advocate
Donna Williams/P. Samuel1963199825Autism blogger/author d. 2017
Anne-Laure (Anlor) Davin1964201046Tennis star, author, Zen teacher
Courtney Love19641973 9Singer, founder of band Hole
Valerie Paradiz1964200340Author of Elijah’s Cup
Dawn Prince1964200036Scientist/author
Michael John Carley1964200036Author/advocate
Jennifer McIlwee Myers1966200236Nurse, author
Samantha Craft1968201244Educator, author, employment recruiter
Sarah Hendrickx1968201143Author, presenter/diagnoser of adults
Barb Cook1969200940Founder, Spectrum Women, counselor
Yenn Purkis1974199420Blogger, speaker and civil servant
Stephen Wiltshire19741977 3Artist, autistic savant
Clare Sainsbury1976199620Author/radio host
Nick Dubin1978199517Presenter/author
Hannah Gadsby1978201638Comedian, presenter, author
Daniel Tammet1979200425Math savant/author/poet
Almost all diagnosed since DSM-IV (1992); some had other labels before that (schizophrenia, PDD, BPD)  

What is a Late Diagnosis? It’s in the Eye of the Experiencer

Group Of Senior Friends Hiking In Countryside

I get so frustrated when I read of a late assessment for autism at age 20. Of course I am relieved whenever anyone finds out, but there is so much of life you regret you are unable to change at 40 and beyond.

The topic of What is #LateDiagnosis has come up on Twitter so I’ve drafted my own framework. I admit to my privilege of being a white, middle class person in a country where autism is better recognized.  If I were a woman of colour in a rural area or third-world country, assessment would be unobtainable.

The group of adults on the lower right is representative of older autistic people. #AutisticElders

WHAT IS #LateDiagnosis ?

Age 7 Late diagnosis for a boy; typical to early for a girl
Age 12-17 Late for a girl; very late for a boy
Age 18-20 Sadly late for school help, but person largely avoids ABA

Age 25 Frustratingly late—too late to qualify for employment/transition services
Age 30 Intolerably late adult diagnosis; usually after breakdown and/or several misdiagnoses
Age 40 Bewilderingly late; usually after child diagnosed.  Childless go undetected
Age 50 Painfully late—at expense of relationships and mental health
Age 60 Tragically late—sometimes due to a grandchild.  Could have explained your life
Age 70 Appallingly late—mask is now firmly in place
Age 80+ Unfathomably late: diagnosis may not matter—mask goes back on in care homes

A recent and rare research paper on the topic.

Part One of Two.

Won’t You Be My (Bubble) Neighbor?

As if autistic adults don’t have enough to worry about during a pandemic, they will soon have to consider whether, or how, to extend their social circle in a new stage of physical distancing.  I call this the Bubble Dilemma.

Social restrictions are already eased in New Zealand (NZ), where residents have levelled the curve after only 20 deaths.  By late April 2020 officials had lowered their emergency from alert level 4 to 3 through rigid adherence to “staying in your bubble.”

Toby Manhire in The Spinoff reported (27.04.20) that “the…principle of isolating with your household broadly remains:  ’you will be able to extend your bubble slightly to bring in close family, isolated people, or caregivers.’”

Not that I planned suddenly to become more social, but I am that isolated person at the best of times.  I’ve lived in a bubble, or with a glass wall between me and most others.  The New Zealand reporter writes to ‘use your bubble wisely’.  But who really wants to be in my bubble?

Right now, I have a tenant (I acknowledge the privilege of having a home during this crisis) and go out rarely, just to walk, cycle or get food.  If, with her pre-existing medical conditions, she gets sick, will I be able to help her, a disabled person with no family?  Will her situation preclude my acceptance into certain bubbles or safe spaces?  My friends all seem to have bubbles of their own.   Just as on the playground, I’ll be the last one chosen.

“Stay in your bubble—keep others safe,” shout the NZ guidelines late in March, complete with cute infographics on the danger of “breaking your bubble.”

Apartment blocks were described as collections of little bubbles, not one big one.

More recently in Canada, the province of New Brunswick, which has flattened the COVID-19 curve, has released its two-household bubble system effective April 24:  on page 7 of a detailed 13-page bulletin, the government states “Your household can join with one other household if both households mutually agree”, or what journalist Joseph Brean termed “an extended period of pairing to socialize exclusively, almost like a pandemic marriage, or marriage of families, as the case may be.”

Of course, this assumes one resides in a household, in order to “enjoy the company of another household bubble.”  And once you decide, you can’t change bubbles….

Again, the elderly and disabled are liked to be excluded.  Reporter Joseph Brean noted little attention has been given “to the potential fallout in anxiety and hurt feelings among those who are nobody’s first choice, for example, or those who decline [my] bubble request.”

What if picking me means they must exclude others?  Will the traumas of old abandonments be triggered by the realization that I would be a fool to ask, “Won’t you be in my bubble?”

I’m rarely anyone’s first choice as a friend, and am usually the ‘fallback girl’ in love, so this impending situation causes more anxiety than just the lockdown, which at this writing I’ve endured for seven weeks and counting.  It’s a big deal to even trust someone to let them inside my bubble.

Since I started this story my fears have come true.  Other provinces are starting their own bubble policies. Someone on Twitter even suggested there will be mediation services needed for those who are excluded.  Remember the “who was mom’s favorite child” game?   You could say the family squabbles are bubbling under the surface.

Maybe I’ll create my own quarantune version of Richard Rodgers’ “In my Own Little Corner”.  Just leave me safe “In my Own Little Bubble”….

Julie Andrews as Cinderella