A name I call myself. This blog is primarily for me, for my peace of mind. I don’t try and speak for any other person. If you find some commonality, great. If not, just scroll on by.
I have called myself, since professional assessment, a person with autism or Asperger’s (not often now); an Aspergienne (my own bilingual term patterned after JE Robison’s Aspergian), autie, autistic, but most often aspie. It is my nickname and not a reference to HA.
My identity is hard won and if you don’t like that, go elsewhere. I respect your right to your own opinion. I also welcome self diagnosed individuals, as many adults are unable or unwilling to seek professional assessment.

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.

#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.