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

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?  https://thespinoff.co.nz/society/27-04-2020/the-bumper-guide-to-what-you-can-do-in-covid-19-alert-level-three-60-questions-answered/

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.”  https://thespinoff.co.nz/covid-19/26-03-2020/what-is-a-bubble-and-how-does-it-work-the-rules-of-having-lockdown-buddies/

Apartment blocks were described as collections of little bubbles, not one big one.  https://covid19govt.nz/individuals-and-households/home/renters-and-homeowners/#information-for-apartment-dwellers

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.”  https://nationalpost.com/news/0428-na-bubbles

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.  https://www.theglobeandmail.com/canada/article-families-find-their-bubbles-as-lockdown-measures-ease/ 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  

#WAAM Revisited April 2019 OR Thank God it’s May

What was with hashtag #WAAM this year?

This time around I decided to dissect the acronym and hashtag used to identify April.

World Autism A____ Month.   I’m SO done with Awareness and/or Acceptance.

W:   Forget the “World”; I’d settle for school, community, church, transit, workplace, ____ inclusion.

The Two A’s   I accept my Autism.  Society needs to Appreciate autistics advocating.  The second A could also stand for Assumption of Competence.

M   instead of “Month”, more like Moment by Moment, or perhaps Movement.

We need to take charge of the conversation about us.  #FlipTheNarrative, make an #AutisticCultureShift, as Jon Adams terms it.

So here are a few acronyms using the current lettering, and a totally new idea.


Weird Autistics Articulation Month

We Autistics Are Masking

Worldwide Autistics Are Marginalized

#WAAM   A load of medical papers drops on my desk—Duh research

#WAAM   Another door of an employer or friend slams in my face

#WAAM   Someone attacks an autistic person for not being “like their child”

#WAAM   I hurt so badly for those under attack, yet am not supposed to (be able to) feel empathy

#WAAM   It is only the second week of A(t)Warness—the A month in my region should be full of spring showers—now it leads to old memories and new nightmares.  Autism Bewareness is one description I’read.

#WAAM bam, no thank-you, man (apologies to David Bowie!)


We Appreciate Autistics Movement OR Worldwide Autistics Avoid Marginalization

Finally, how about a completely fresh take:  SAJE  

Society for Autistics on a Journey to Engagement

Senior autistics are sages, graduates of the school of hard knocks before diagnoses were available.  Our lived experience should be acknowledged and welcomed.

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.

An Autistic Woman Feels Alone at INSAR

“The definition of autism itself is biased against people who have it. The condition is characterized by a suite of negative characteristics including problems with language and social interactions.  Autism’s many advantages are not part of the diagnostic criteria.”

Dr. Laurent Mottron, Montreal, 2011

I went to INSAR 2019 on my own, with no particular agenda other than to get as much out of the experience and relay it to my autistic contacts.  What I didn’t expect was how much it would take out of me.   Thanks to a kind invitation, I had a place to stay, but everything else cost me, including lost income from self employment.  

I was alarmed when Dena G sent me a message that she had her whole agenda mapped out.  As she was a researcher herself, she may have had advance access to the schedules.  

What was I heading into?  I registered for the community advocate rate of $100 U.S. the first day it became available, but found information sorely lacking until the start of the convention.  I knew I had several areas of interest, but I wasn’t an accredited journalist.  I thought I had my priorities straight:  research that specifically studies autistic adults as opposed to children and youth; how many had significant numbers of women included; and were older women’s needs acknowledged.

There was good and bad news……

  1. The app that listed all the abstracts was only uploaded the morning of the first day (coinciding with the pre-conference) so I had to teach myself how to use it (not easy as I’m no techie) and try to allocate my time with 1800 submissions.  Because of the secrecy until May 1, I was not aware the CAMH study I myself advised on was to be unveiled!
  2. If the program schedule (see below—it is daunting) had been available sooner (maybe some released every week in the month leading up to the convention), the autistics present could have spread themselves out more; they tended to go to the same talks.
  3. Several autistic women had posters in Room 710 which I called Auditory Hell.  There were earplugs at check-in but many didn’t know about them.  The poster room was a constant barrage of excited talk and fluorescent lights.  At least Autistics Aloud (with my new friends Patricia, Louise and Aaron,) were stationed near the exit door. 

DAY ONE – Travel and registration   Song (an 80s theme for the event, when most of the researchers present were toddlers.) “Never Surrender” by Corey Hart. https://www.youtube.com/watch?v=-4pg6Jh94Lo

Simon Baron-Cohen (hereafter SBC), the outgoing president of INSAR, mentioned several times including his welcome in the program that the Executive Committee has worked to “restore the balance between biological and non-biological science.” in the programming, as though this was keeping delegates away (it didn’t—they had their highest attendance ever).   This seemed to be catering to the neuroscientists, geneticists, and behaviorists.  Though this is an event by scientists for scientists, we were made to understand that autistic voices would be welcomed.   Yet stakeholders were defined as those “affected by autism”, a rather nebulous concept which did not centre our voices in the discussions.

The only INSAR advisor who is autistic is John Elder Robison.  No disrespect to his amazing efforts to champion our needs, but he is sidelined on a Community Advisory Committee and is listed as Ex Officio.  One person, as qualified as he is, does not equal autistic representation.

As the first full day wore on, my roommate and I attempted to invite the women (who seemed to outnumber autistic men at the event) to a meet-up at our hotel the next evening.  I had tried to organize this before I arrived and got nowhere.  The only event, a stakeholder lunch, included researchers and allies.

We put up a poster in what passed for a sensory break room, and touched base in person with as many as we could find.  Due to late and poor communication on our part, D and I succeeded in getting six attendees and one local resident to come.   As far as I know this was a first for INSAR.  What’s more, four of the meet-up attendees were researchers (not all were ‘out’; one took the photo.)   I suspect there are many more who don’t disclose.

DAY TWO—Before and during breakfast D and I learned to plan each day’s strategy, especially noting the poster numbers (the family stakeholder ones seemed to be at the back of the room so I started there, and worked my way to freedom.   There has to be a better way than to endure this onslaught of input for two hours at a time (see notes at the conclusion.)

80s Song of the Day: “Women Around the World at Work” by Martha & the Muffins

I became the T-shirt girl, trying to influence the toxic environment with my slogans.

This day I wore my #NotJustCuteWhiteBoys logo.  On the back it said “Spectrum Sisters Rock!” as I was trying to find people to invite to the meet-up.  

I got a strange question from someone behind me on the escalator, asking did I have a sibling with autism.  This is an example of the mindset that it couldn’t possibly be me attending in my own right.  Just as Spectrum Women are not Women who know someone on the spectrum!

DAY THREE—battling exhaustion by this time.  Played some Prince to get the blood going.   Dancing around our suite to Raspberry Beret “she walked in through the out door”, going against the flow as usual….

We had skipped the keynote address in order to have a nice Montreal deli breakfast, home-cooked oatmeal that seemed to sit well with me.  You have to pace yourself against the continual assault of all that science. (Yes I was humming She Blinded Me with Science!)  To conserve my spoons, I skipped talks on children and adolescents, drugs and interventions, and covered only those topics which could influence women’s quality of life.  I still don’t get the impression most researchers acknowledge we age, are parents and grandparents, or struggle with health and employment.

The Real Problem is right in the mission statement of INSAR (which after all was formed by parents in the days of Cure Autism Now to interest scientists in autism research.)  “To improve the lives of people affected by autism….”  

DAY FOUR:  I wore my Neurowonderful shirt to the 7:15 a.m. session (Let’s Talk about Sex, Baby! I tuned in my head.)  It said I love someone who is Autistic (it’s me).

I think the talks on the last day were the best of all, plus my lunch with Jon A from Flow Observatorium in England (see tweet below).   We were both tired of the vegetarian box lunches (and all the plastic waste—is there no better way to feed 2500?)

Were there enough autistics there (approximately 5% according to JE Robison) to #FlipTheNarrative?  Time will tell; we had to push the envelope to be heard.  Next year’s Chair in Seattle, Sara Jane Webb, is accepting Emails and Tweets @PBSLab_Webb,  and SBC has welcomed Opinion pieces to INSAR’s journal Autism Research. [NOTE:  INSAR 2020 was cancelled due to the COVID-19 pandemic.]

The Scientific Program chairs lauded the advances in research as “essential to the success of the meeting.”  I would ask if these “autism advances” are equally “advances for autistics.”  This paradigm shift is sorely needed.  SBC mentioned in his welcome that the point is to “understand autism and help autistic people.”  Frankly this is backwards.

Regardless of whether you follow the medical model, social model or some combination, the aim is to serve the cohort you are studying.  No, not the parents and teachers but autistics themselves.

Sue Fletcher-Watson, one of the researchers I grew to respect over the four days, tweeted two reviews (@SueReviews).  In the second one she offered these trenchant observations:

“BUT none of these things – passion for science, excitement in discovery, the chance to break new ground–is more important than the bottom line which is, how does this help autistic people now, or in the future? If we all keep our eyes on that prize, we should be excited to attend a conference about autism research (especially one that is also inclusive of autistic people, natch!) regardless of the disciplinary “balance”.

“If our shared values outweigh our disciplinary differences, that’s what makes for a brilliant conference.” She means getting out of our research silos!

So, what is SUCCESS at INSAR?  Just surviving the sensory overload for several days?  Grabbing a quick word with someone in a hallway, getting your question answered during a panel?  I hope that’s not all.

It seems there is a hierarchy of success at INSAR—(from lowest to highest achievement, you can argue about the placement)

8) Getting your Poster accepted

7) Being invited on to a panel

6) Having your paper published in a reputable Journal

5) Getting a promotion or a plum research assignment funded

4) Giving a 12-minute oral presentation

3) Winning an award (in Sarah Cassidy’s case this was well deserved)

2) Moderating a panel session

1) Delivering a keynote address

Again, Fletcher-Watson elaborates on the hamster wheel researchers get on:

“One,… Either the panel [by a group of researchers] gets accepted as a whole, or it might be that individual abstracts from the group get accepted—either as oral presentations (talks) or poster presentations. Two, an individual researcher/team can submit a single abstract.  That will either get picked as a talk, or as a poster, or rejected from the conference. Basically, having the chance to present orally— on a panel or as an individual talk—is considered more prestigious.”

Even before I arrived in Montreal, an inflammatory article in Spectrum News (which is funded by SFARI) created a controversy over the request last year for flapplause (misspelled flappause) by a few autistics.  The scientists, mostly unquoted, felt miffed that they didn’t get the applause by which it was reported they measure success! 

Overall I’m disillusioned about the research into the female or more internalizing experience of autism.  When I thought later to search the Abstracts on the word “Women”, I came up with 26 papers and presentations that directly mentioned them:   out of 1800!

With the increasing accuracy and rates of diagnosing women/non-binary persons and girls, maybe we can get rid of research that doesn’t capture enough females to even be statistically relevant.

For other good reviews, check Shannon Des Roches Rosa or Sara Luterman on specific papers.  For now, I would urge researchers to “brainstorm with your colleagues” all you like, as was requested in the program.  Just don’t do Everything about Us Without Us.   Autistic adults should be the primary ‘stakeholders’ in the participatory models now being proposed and utilized.

An autistic life is a terrible thing to waste.  

Song in my head as the conference wound up:

Chumbawamba—Tubthumping  “I get knocked down, but I get up again….” still channeling that 80s vibe.

The last word goes to Simon Baron-Cohen again, from the 11 a.m. press conference on opening day.  He urged all attendees to “keep research healthy and growing.” 

 I would ask:  How do you do that unless you keep autistics healthy and growing? When your ‘subjects’ have a life expectancy of 54? Oops, past my expiry date.

On the positive side, I gave out about 40 of my business cards, made some excellent contacts, and have already heard back from kind researchers who sent posters and additional information I requested.

My roommate tweeted on the last morning, as we dragged ourselves out of bed to the Special Interest Group on Sexuality (which was a highlight, and at which I served leftover wine….),

“To the #ActuallyAutistic advocates at #INSAR2019. You have endured 4 days of sensory, social & information overload. Witnessed countless posters and panels focusing on how to fix you. I couldn’t even imagine. You are #resilient. You are #appreciated. You are #valued. Thank you.”


Poster room ideas—save reams of paper and make it more accessible.  Show them via video in each successive time slot, so they can be viewed from the sensory room.  Have appointment slots with individual research teams so you can ask questions about a poster.  They could try ten-minute slots spread over the two-hour period, or even beyond.

Alternately showcase fewer at a time, like a museum display with benches down the middle to allow browsing.   And put boxes of ear plugs EVERYWHERE.  Trying to view posters should not be an Olympic endurance sport.  There are so many good ones I missed.

Hands down, the best presentation I heard was Jon Adams’ from Flow Observatorium.

On the last morning, D tweeted rather sleepily the following astute observation:

Just as some theorise that there are many #Autisms I believe there are many #INSARs. Each person has their own experience and interactions with the conference.

D had to leave early, before the last Panel Sessions May 4, which turned out to have the most relevance to me as a female autistic.  Unfortunately two were running at the same time, so I ran between them.  #249 on Autism, Sexuality and Romance:  From a Better Understanding to Attuned Support chaired by Jeroen Dewinter of the Netherlands; and #251—Clinical Presentation of ASD and Access to Care Among Girls chaired by Allison Ratto of Washington DC.  That meant I missed Dr. Mark Stokes of Australia, who I found out later is working in many areas including Menopause, my current research interest.

I think it telling that such important panels were scheduled the last afternoon, and were pitted against one another…..

Allison’s slides (see below) perfectly summed up the conference for me.  She works closely with Julia Bascom of ASAN.  AWN was represented by VP Corina Lynn Becker in the absence of Sharon daVanport.  Unfortunately, I missed the discussion because I dashed back to 249 to hear Anne Kirby of Utah on Autistics experience of Sex (solo and partnered.)  And I lost my Vibes earbuds in the washroom.  I was really in overload!

Again, the researchers were insightful and considerate; it is the philosophy and format of the event that need to change.  I plan to attend every two or three years and see if the focus changes for the better.  Boston in 2021 anyone?

Allison Ratto slide from Day 4, Talk #251 on care of girls