I’ve been calling myself an orphan for at least a decade now. Here is how I began.
.*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
My recent e-mail correspondence with author and columnist Sarah Kurchak. Look for Part 1 on medecoded.com
The boarding camp where I learned about myself and how to get along with others. Forty years ago this summer.
Do you missing singing like I do? My last counselor told me “Concerts are like food for you!”
Freed from obligation during the pandemic, I am no longer compelle.d, I’ve gone from being alone about 80% of my waking hours to 95% and I like my new routine.
The debate about an interior monologue put me in mind of how my brain works. People have said I spend too much time “in my head”, but I like the way I think.
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.