I’ll Keep that in Mind–my Rich Interior Life
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.
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
| Name | Born | Diagnosed | Est. Age | Main Endeavours |
|---|---|---|---|---|
| Anthony Hopkins | 1937 | 2007 | 70 | Actor, artist |
| Jim Sinclair | 1940 | 1980s | 40 | Autism rights activist |
| Leith McMurray | 1946 | 2005 | 58 | Musician/counselor |
| Temple Grandin | 1947 | 1950 | 3 | Scientist/author |
| Nick Drake* | 1948 | N/A | d. 1974 | Guitarist/English major |
| Jerry Newport | 1948 | 1995 | 47 | Author/speaker |
| Dan Aykroyd | 1952 | 2004 | 42 | Actor/comedian |
| David Byrne | 1952 | 2012 | 60 | Writer, founder of Talking Heads |
| Wenn Lawson | 1952 | 1994 | 42 | Psychologist/author |
| Tim Page | 1954 | 2000 | 45 | Author/professor/music critic |
| Mary Meinel Newport | 1955 | 1993 | 37 | Actor/speaker |
| Martine Stonehouse | 1956 | 2001 | 55 | Transgender and labour activist |
| John Elder Robison | 1957 | 1997 | 40 | Inventor/author/advocate |
| Gary Numan | 1958 | 1979 | 21 | Rock performer, The Cars |
| Jessica (Elly) Park | 1958 | childhood | Subject of 1967 book The Siege, fine artist | |
| Dena Gassner | 1959 | 1999 | 38 | Professor, author, activist |
| Liane Holliday Willey | 1959 | 1996 | 37 | Author/autistic mother/advocate |
| Daryl Hannah | 1960 | childhood | Actor, environmentalist | |
| Susan Boyle | 1961 | 2012 | 51 | U.K. performer |
| Michelle Dawson | 1961 | 1992 | 31 | Canadian researcher |
| Chris Packham | 1961 | 2005 | 44 | Naturalist/TV presenter |
| Eva Cassidy* | 1963 | N/A | d. 1996 | Guitarist/singer |
| Gunilla Gerland | 1963 | 1992 | 29 | Swedish author/activist |
| J David Hall | 1963 | 2019 | 56 | Founder of NeuroGuides, parent, advocate |
| Donna Williams/P. Samuel | 1963 | 1998 | 25 | Autism blogger/author d. 2017 |
| Anne-Laure (Anlor) Davin | 1964 | 2010 | 46 | Tennis star, author, Zen teacher |
| Courtney Love | 1964 | 1973 | 9 | Singer, founder of band Hole |
| Valerie Paradiz | 1964 | 2003 | 40 | Author of Elijah’s Cup |
| Dawn Prince | 1964 | 2000 | 36 | Scientist/author |
| Michael John Carley | 1964 | 2000 | 36 | Author/advocate |
| Jennifer McIlwee Myers | 1966 | 2002 | 36 | Nurse, author |
| Samantha Craft | 1968 | 2012 | 44 | Educator, author, employment recruiter |
| Sarah Hendrickx | 1968 | 2011 | 43 | Author, presenter/diagnoser of adults |
| Barb Cook | 1969 | 2009 | 40 | Founder, Spectrum Women, counselor |
| Yenn Purkis | 1974 | 1994 | 20 | Blogger, speaker and civil servant |
| Stephen Wiltshire | 1974 | 1977 | 3 | Artist, autistic savant |
| Clare Sainsbury | 1976 | 1996 | 20 | Author/radio host |
| Nick Dubin | 1978 | 1995 | 17 | Presenter/author |
| Hannah Gadsby | 1978 | 2016 | 38 | Comedian, presenter, author |
| Daniel Tammet | 1979 | 2004 | 25 | Math savant/author/poet |
*Suspected
What is a Late Diagnosis? It’s in the Eye of the Experiencer
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.
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. https://www.tandfonline.com/doi/full/10.1080/21642850.2019.1684920
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.
WHAT WE HAVE NOW:
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!)
HOW TO REWRITE #WAAM:
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.