Why I’m an orphan times three

Why I feel orphaned–I’m always going against the flow–Credit to Rhi Lloyd-Williams.
I’ve tweeted and blogged for months, but never really explained my Orphan status. So here goes.
  1. Literally an orphan due to my parents’ deaths when I was barely middle aged. Not that uncommon, but none of us knew I was autistic. I’m a little sorry about that, more for their sake because they never really understood me. My mom and her dad had undiagnosed aspie traits, which may have contributed to their demise. Mom was a month shy of 69.
  2. In everyday reality, I am orphaned by men, often with Asperger diagnoses, who won’t allow women at their table. They don’t notice some of us are Research Orphans [women, nonbinary, non white], especially us mature women who fly under the radar of most diagnostic assessment checklists. Now Mottron and others claim we are over diagnosed, watering down their test samples. He wants to bring back the separate Asperger label. I vote for Sukhareva Syndrome, or maybe Wing-Gould. Whether Herr A knew about Grunya Sukhareva is moot; she deserves recognition now. Here’s the research hamster wheel–
Why women aren’t often subjects of autism research, by Allison Ratto, INSAR 2019
3. Metaphorically orphaned by a society* that continues to deny the internalized presentation of autistics, and rewards those of us who successfully mask with the verdict “you don’t look autistic”

.*Including prominent researchers and assessors who act as gatekeepers

Denied a seat at the table as

I’m TOO autistic to be an expert on Autism 

But NOT autistic enough to be Like Your Child

#WeAreTheExperts #BreakTheAutismStereotype #NotJustCuteWhiteBoys #WeAreLikeYourChild #GenderBias #WhiteMaleGaze

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.