Autistics are left behind when stereotypical Autistic behaviors or traits are used as the sole criteria when evaluating and diagnosing Autistics. While this can be damaging and impactful to boys and men as well, women and non-binary folks have been left behind, misdiagnosed, and written off at an especially alarming rate. This leads to so many issues, many of which I know firsthand as a non-binary Autistic who was only just diagnosed a few years ago at age 27.
It was once thought (and still thought by many) that the number of Autistic boys far outnumber the number of Autistic girls. But with more and more Autistics like myself speaking out as advocates, people are starting to realize just how untrue and damaging this misinformation truly is. While trying to re-educate neurotypicals, some advocates focus on the differences in how girls present versus how boys present. Others look at “internalized” characteristics versus “externalized” characteristics and the differences in how traits manifest which can sometimes vary between genders. I’m not sure what the answer is myself; I only know my own experience.
These are a few of the things I myself have experienced as an AFAB (assigned female at birth) non-binary Autistic diagnosed in my late 20s:
- I learned early on to “mask” my Autistic traits, even though I didn’t realize they were generally not viewed as neurotypical things. I was bullied relentlessly in primary school, sometimes even by teachers. I didn’t know why I was a target, but I knew I was and that trauma forced me to sit back and watch. I latched onto peers and mimicked, painfully masking my instincts and following their examples in an effort to conform and fly under the bullying radar. Even as I begin my 30s, taking off that mask has been an alarmingly difficult process. I still can really only let my mask completely down around my wife, when I am free to verbally stim or rock or flap my hands in joy, use echolalia, let out verbal and physical tics, etc. I can’t describe how freeing that is.
- Because of my “skill” at masking, I was more able to “pass” as neurotypical. The stress of doing this long-term leads to extreme stress, trauma, anxiety, and other mental health concerns. I myself have severe C-PTSD, social anxiety, a history of disordered eating, etc. I also live with fibromyaglia and chronic fatigue, and these become more severe when I have to mask for long periods of time. When you can’t understand why you are different and spend so much energy squashing yourself into a box, it takes a devastating mental and physical toll.
- Some special interests (which folks sadly tend to pathologize rather than celebrate) may be less obviously “unique” and may therefore go unnoticed. For example, knowing every fact possible about One Direction vs. knowing every fact possible about trains. My own intense interests include Japan, Japanese language, singing, writing, art, and fantasy/sci-fi books. These hobbies have lead me to my college majors and careers; I am fluent in Japanese and spent several years living in Japan. I now write and create art as a form of self-expression and advocacy.
There is so much more to this topic. One main goal of my blog is to hopefully reach people who are like me. Folks who have always been different, but haven’t known why. I want parents to understand more about their kids. I want professionals to challenge the stereotypes they hold and listen to Autistics.
My own diagnosis has been so beneficial, transformative, and life-changing for me. For me, the Ah HAH! moment was when I stumbled across Rudy Simone’s book Aspergirls: Empowering Females with Asperger Syndrome.
Below are the charts from Simone’s book that changed my life and started me on my search:
Simone says of her charts:
“These lists are based on my research. While others may be coming to their own similar conclusions, I based these observations of Female AS on interviews with dozens of diagnosed women of all ages and educational backgrounds, from all over the world. These traits were threads that ran throughout their information and stories, tying us all together. As usual, I do not mean to say that all women with AS will possess all of these traits and I do not like putting us in boxes, but there was a need for an easy-to-read reference.”
While I identify as non-binary, anytime I would wonder if I could possibly be Autistic, I would pull up lists of traits and immediately shake my head, seeing the stereotypical and often male-oriented traits listed. It delayed my diagnosis by literal decades.
This chart was the first step toward self-discovery for me. From there, I found Amythest Schaber‘s Youtube channel, started jotting down realizations in a notebook…then one day, started a blog.
More and more, girls, women, non-binary people are coming forward on Youtube, in blogs and articles, and in person to talk about their experiences as Autistic individuals.
It’s about time the world listened.
On my blog, I recommend:
4 Things I Want People to Know About My Autistic Self
21: Coming Out (Again): Part 2, The Sequel
29: When You Don’t Believe I’m Autistic
30: Seeking Sara, Finding Alex
If you want to hear firsthand from other Autistics, check out the podcast Autism Stories, hosted by my friend Doug at Autism Personal Coach. Here are two episodes I appeared in, but there are so many more:
On late diagnosis (Under Seeking Sara, before Autistically Alex launched):
On gender identity as an Autistic:
Please check out the Autistic Self Advocacy Network (ASAN): https://autisticadvocacy.org/
Also be sure to check out: Autistic Women & Non-binary Network (AWN): https://awnnetwork.org/autistic-women-non-binary-network-
Twitter is a great place to find Autistics:
Mikhaela Ackerman, Edge of Playground: @EdgeOfPlayground
Autistic Science Person: @AspieHuman
Amythest (Myth) Schaber, Ask an Autistic @neurowonderful
There are literally 1000s of us on Twitter!
Hashtags to search on Twitter: #ActuallyAutistic #AskingAutistics #AskingAllAutistics #RedInstead
Resources About Autistic Women and Girls:
Purple Ella’s Youtube video “Differences: Autistic Boys and Girls.”
- This is a really cool video where she sits down with her Autistic daughter and son, discusses some of the ways that girls and boys Autistic traits tend to vary, and asks them about their experiences.
Purple Ella’s video “Autism: Here Come the Girls”
- Ella and Ros talk about lots of topics related to Autistic women and girls.
Purple Ella’s video “Autism in Company: Diagnosing Women and Girls”
- Ella sits down with her friend Ros to discuss how girls, women, (and others!) present differently.
Amythest Schaber’s “Ask an Autistic” Youtube series and tumblr.
- Amythest is an incredible self-advocate whom I admire a lot. They are educated, sincere, and overall just a wonderful person. Their videos were some of the first things I saw about Autism.
Hannah Riedel’s Youtube channel.
Seventh Voice’s blog post entitled “The Gaslighting of Women & Girls on the Autism Spectrum”
- An eerie, but accurate depiction of what many girls and woman face.
A great article by Fabienne Cazalis and Adeline Lacroix entitled “The Women Who Don’t Know They’re Autistic”
Excellent article about masking by Francine Russo entitled “The Costs of Camouflaging Autism”
An article by Scientific America entitled “Autism–It’s Different in Girls”
Aspergirls: Empowering Females with Asperger Syndrome by Rudy Simone
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