Affliction or condition? Battle or journey? by Christine Jenkins, SWM Correspondent

I compare and contrast my discovery of breast cancer with Asperger’s (ASD Level 1)

My 50s have been a tumultuous time; I’ve dealt with the unfolding realities of separation, eventual divorce, menopause, gynecological issues, self identification on the autism spectrum, then official ASD diagnoses from 2008 onward.

Then the bottom fell out of my world in Spring 2016 when I had two abnormal mammograms, swiftly followed by a very painful stereotactic biopsy of my left breast in early May.  Due to our wonderful Canadian healthcare coverage, I went from that to lumpectomy surgery in five weeks, then on to radiation six weeks after that (it would have been only four weeks but I needed a holiday and to take back control.) I finished rads August 23 so I called it my Sudden Summer Detour.

Everything happened so fast, and now, though I’ve had some after effects, I’m essentially cured (it takes a clear mammogram five years in a row to be official.)  No chemo, no adjuvant drug therapy—I am blessed.

So why is it easy to get sympathy for cancer announcements, and so hard to disclose my ASD/Asperger’s diagnosis?    I’ve been very selective in who I tell about the latter, but sent monthly email newsletters on my cancer prognosis.   I started a thread for neurodiverse women with breast cancer on a private cancer blog, and the only responses were from moms with autistic kids.   Sigh….I stopped posting.

I don’t have to look like I have cancer for people to believe me.   Why would I make it up?   Yet, because I don’t “look autistic,” does that now make me a hysterical female, imagining ailments or trying to excuse ‘poor’ behaviour?

Judy Endow quotes advocate Bridget Allen (italics my emphasis):

“The issue here is classifying autism as a disease to be cured. I make the comparison to cancer. I was a person with cancer (not a cancerous person). I was inherently the same person before, during, and after cancer.

“Cancer was a bad thing I had cut out of my body, and went on with my life.  Autism…is woven into every fiber of my being. It doesn’t lay (sic) on the surface to be removed. I am an Autistic woman.”

I like charts, so here are my contrasts.

Breast Cancer (BC)                     VS. Autism  
‘Person with’ BC Identity First — Autistic woman
Easy to diagnose Hard to identify teen or adult female
Lots of money spent Very little support over age 25
Established protocols No consistent policy, strategy, or feedback
Debate about treatment Debate about prevention vs. treatment
Removed from my body Part of my being
Pathological/clinical model Social/cultural model
Cure emphasis Should be support emphasis (not a disease)
People don’t patronize Many downplay severity and patronize adults
No one says  “Oh you can’t have cancer” Many say “Oh, you can’t be autistic.”
Women get most of the focus Men get most of the focus
Men have BC too Autistic women are more common than you think
People want you to wage war, rather than thrive People think you’re not trying hard enough
Environment not normally blamed Environment often blamed
No attempt to stop childbirth In some countries, testing leads to abortions
Future of research looks bright Most research to genetically remove traits

Autism does not kill.   As Maxfield Sparrow (formerly Sparrow Rose Jones) wrote on

“Autism is a cognitive and perceptual difference that is so deeply rooted in our neurology that it cannot be separated from our identity. Beneath cancer, there is a healthy child hoping to break free. Beneath autism, there is more autism — it’s autism all the way to the core.”

Max Sparrow goes on:

“Autistic adults often do not resemble the Autistic children they once were — we grow and develop all our lives — but Autistic adults are still every bit as Autistic as they were when they were children, no matter how many coping skills are learned, no matter how ‘indistinguishable from their peers’ they become.” Quoted April 1, 2017 on the A is for Acceptance blog

I may regret the pain and anxieties of being diagnosed with cancer, although that discovery and the costly removal of those worrisome, micro-invasive cells may have saved my life.  I will never regret confirming and accepting I am aspie, as this is how I now celebrate my emancipation into full humanity.    Before, I did have a piece missing, a piece of my soul; I felt like a misfit and an impostor.  I am fearfully and wonderfully made; different, not less.

Breast cancer made me a survivor; my Asperger’s is who I really am.  Believe me.

About SWM Correspondent Christine Jenkins

Christine is a certified voice teacher, trained singer and former radio producer with a degree in journalism who also gives piano lessons on her century-old grand. Ms. Jenkins is a peer mentor to many women who suspect they are on the spectrum. Her current special interests are research into and widespread use of female diagnostic tools, avoidance of misdiagnosis, and wellness for senior autistics. She speaks at conferences and was interviewed by CBC radio and the Ottawa Citizen. Christine co-founded the Asperfemme support group that hosted their first women’s conference in 2013. Late diagnosed in 2008, she estimates she is in Philip Wylie’s 8th of 9 Stages of Autism, Unconditional Service to Society. Christine speaks French and German (Swiss heritage), loves writing, reading, sewing, hiking, canoeing, tea and cats.