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.
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):
April marked one year of Seeking Sara! Can you believe it? (I still don’t!) I intended to write this post in time for the anniversary. Then by the end of April. Then by the end of May… and here we finally are on June 1st. Better late than never!
It’s been a very strange thing to reach such a huge milestone and goal, feeling so accomplished and proud, and then hit a huge, daunting wall. That wall had “Now what?” scrawled across it in bright, tacky, overpowering paint.
It’s about time I start knocking down that wall.
1 Year Reflections
I’m sitting here in my first meet-up with a local writing circle, trying desperately to throw some ideas that might stick to the page—er, screen— and I’m reminded of lyrics from “Seasons of Love” from RENT.
“Five hundred twenty-five thousand six hundred minutes.
How do you measure… measure a year?”
So how do I measure this year? In followers? In views? In insights and number of blog posts?
Well, in this first year, my blog has been viewed 12,133 times by 6,537 readers. Wow!
But is that the best way to measure this past year? Should I look at metrics and agonize over how many posts each reader stuck around to read? Check out my social media accounts and tally followers? Count how many posts I’ve written?
No. That’s not why I write, and that’s not a full look into this past year. So just how do you measure a year?
I answer this question with the response in the RENT song:
“How about love?”
How about the community that I have been welcomed into? The friends I have made this year? Out of everything that has happened to me in this past year, finding lifelong friends within the Autistic community has been one of the single biggest highlights. The number of people I have connected with is quite honestly beyond my wildest imagination. Before my blog, before joining Twitter… I had no idea there were so many like-minded people (pun kind of intended. Sorry. Kind of.) just a mouse click away. I was just hoping for one new friend—one new person who thought like me. And I found hundreds.
This past April, Edge of the Playground (@EdgeofPlayground) and I collaborated with a bunch of Autistics to make a video that’s been viewed over 20,000 times across all platforms! If you had told me last year that I would get to edit and produce a positive video with a bunch of awesome Autistic folks for April, I would have laughed! I wouldn’t believe something like that could happen.
“How about love?”
The support I’ve found in those around me has been more than I could have asked for. I routinely have friends and acquaintances tell me they’ve read something on Seeking Sara that made them think, made them learn, and ultimately—helped them be a better ally to Autistics.
Friends and family agreed to do a series of interviews for Seeking Sara. Groups I’m in have embraced my wearing of noise-cancelling headphones at gatherings. Family friends recently gave me an early birthday gift, and it was something that shows they support and accept who I am.
It reminds me of another line from the song: “Remember a year in the life of friends”.
I’m simply blown away.
“How about love?”
So… it’s been a year. A year since I was feeling so lonely, isolated, angry… It’s startling to look back and remember what I was feeling last April. I felt so alone. There were so many things that I wanted to write and say and shout. But I felt trapped. It felt like I had duct tape over my mouth and a happy smiling mask where my face should be. The feeling of isolation was something I don’t wish on anyone.
I was telling a few people here and there about my diagnosis, but I felt like I had to carry a list of sources around with me to point at to say “Look, I’m serious! Believe me!” I didn’t feel equipped to deal with disbelief and despite being “officially” diagnosed, I didn’t fully trust myself. (Self-diagnosis is valid in a world where so many have been left behind and misdiagnosed!) It felt so strange to carry this secret around with me that I wanted so desperately to share.
If I told my past self that in a year’s time I would be editing and producing a video of Autistics, wearing noise-cancelling headphones out and about as I please, talking with tons of new Autistic friends, telling people I trust about being Autistic, and just so happy… I would never have believed it. But here I am. Surrounded by love.
“How about love?”
How about self-love? In this year, I have tackled topics on sensory issues, being ill as an Autistic, eating disorder treatment, and so much more. I’ve learned about myself, and through that process, I’ve learned to accept and embrace who I am more fully. I found part-time jobs that allow me to have the accommodations that I need, something I never would have considered asking for just a year ago. (I even wrote an article about it!)
I have profoundly changed during this past year. I have grown in more ways than I can truly examine in one single blog post.
I’m so happy to have you all along for the ride, and I truly treasure every reader who takes the time to read my little scribbles on a humble blog.
When I reflect on a year… it’s the love that’s made it so worth this milestone.
“Who are autistic adults? Like you, we are each unique and you can find us in all parts of your everyday life, not just the stereotypical places you may expect. This April, we are proud to show how diverse autistic people are.” -Mikhaela
My friend and fellow Autistic Mikhaela Ackerman, who runs the blog Edge of Playground, and I have been meaning to collaborate for AGES now, and it finally happened! As April approached, we both found ourselves brainstorming ways to increase positive messages so that Autistics could see some wonderful things against the usual terrible things said about us this month.
Mikhaela had the wonderful idea to do this video, and I jumped at the chance. What a wonderful idea!! Please follow Mikhaela’s blog, Facebook, and Twitter. She is fantastic and very supportive and kind.
A transcript for this video is below.
A huge thank you, too, to the wonderful Autistic people who agreed to do this video!
You can find their information below:
Transcript for “Who Are Autistic Adults?”, a collaboration by Edge of Playground (Mikhaela) and Seeking Sara: An Autistic’s Journey.
A title screen with “Autistic Adults: Who We Are” written above a rainbow Neurodiversity infinity mark. The screen zooms out slowly to reveal a golden yellow background with many positive words on it including: creative, musicians, caring, proud, mentors, empathetic, thoughtful, spouses, hard workers, poets, interesting, funny, listeners, kind, authors, advocates, etc.
(soft drumming joins the guitar)
A black screen appears, then “A collaborative video organized by:” appears on the screen then fades.
A split screen with both creators’ information appears. On the left: A black background with “Edge of Playground, Tying your shoes is overrated” written and a picture of Mikhaela (a young, white woman) on a swing. A golden infinity mark is at the bottom of her side. On the right: A lilac purple background with the text “Seeking Sara: An Autistic’s Journey” at the bottom. A pink flower is next to a picture of Sara (a young white woman with blue hair), standing in front of Niagara Falls.
The text “Who are Autistic adults” appears on a black screen. (The guitar and drum music fade to the background and disappear.)
(Cheerful and gentle music begins)
Mikhaela (Edge of Playground) appears on screen wearing a floral top. “Autistic adults are everywhere. We are in all parts of your everyday life, even in places you might least expect. We are compassionate friends, artists, teachers, family members, professionals, and so much more.”
Sara (Seeking Sara) appears in front of a multi-colored Tie-dye backdrop. “Like you, we have different strengths and weaknesses. Our strengths are varied, and no two are the same. Success looks different for each person. And one is not better than the other.”
The screen cuts back to Mikhaela who says “We are Autistic people…”
Screen cuts back to Sara who says, “and we’re valuable.”
The screen cuts to black and the words, “Autistic people are just as varied as non-Autistics.”
Arianne, a young Latinx person with long hair appears “My name is Arianne, and I’m an Autistic adult. I’m an editorial board member for Stairway to STEM and a writer.”
The screen switches to Yenn, a white person who is wearing a bright blue top. “My name’s Yenn, and I’m an Autistic writer and advocate.”
Kylie, a young white woman, appears on screen sitting in an armchair. “My name is Kylie and I’m an Autistic advocate, aspiring public speaker, and blogger.”
Shadia, a young white woman with short curly red hair appears on screen wearing headphones. “My name is Shadia. I’m a proud Autistic advocate and I run my own consultancy and mentoring business, Autism Actually.”
Kayla, a young black woman with medium length hair appears on screen. “My name is Kayla Smith. And I am an Autistic adult. I am passionate about disability advocacy and fighting for Autistic rights.”
Adam, a white man with a mustache and beard, appears. “My name is Adam. I’m an Autistic writer, teacher, advocate, and supporter.”
The screen cuts back to Sara who says, “My name is Sara. And I’m an Autistic blogger. I like photography, books, and music. I loved in Japan for several years, and Japanese language is one of my passions.”
Peri, a white woman with dark hair appears. “Hi, my name is Peri. And I am a Autistic blogger. I am very passionate about writing and I feel like my Autism helps me express my feelings in writing like nobody else.”
Mikhaela reappears on screen. “My name’s Mikhaela. And I am an Autistic Corporate Compliance Officer. I am an Autistic advocate and also hold a Juris Doctorate in Law.”
Cynthia, a white woman with glasses and a winter hat and jacket appears. She is standing outside. “My name is Cynthia. I’m a blogger, writer, and advocate at The Neurodiverse Woman. I love to write. I love to cook. I love to be active and go on walks.”
Olivia, a black woman with buns in her hair, appears. “My name is Olivia. I love anime. I like studying Japanese. And I love animals! So yeah!”
Adam reappears and says, “I work for the government at the moment. And I used to work as an English teacher.”
Kylie reappears and says, “I’m creative, compassionate, hardworking, and an insightful individual.”
Shadia appears on screen and says, “I love animals, art, music, and writing. And my dream is to run my own rescue and rehabilitation sanctuary and provide animal-assisted therapy for Neurodivergent individuals.”
Cynthia says, “I love to play tennis, go to hear live music, and hang out with my pets.”
Mikhaela says, “My passions are traveling, reading, writing, and yoga. I’m also a certified yoga teacher.”
Sara appears and says, “I’m a very empathetic and compassionate individual who looks out for my friends.”
Arianne reappears and says, “I’m also an artist and musician. I’ve been singing since before I could talk and I’ve been playing clarinet for 17 years.” Arianne smiles widely at the camera.
The screen cuts to a black background with the words, “You are valued.” In big letters.
Credits begin to roll.
(guitar and drum music from the intro replays)
“Thanks for watching!! Organized by: Concept and Script’ Mikhaela Ackerman. Production and Editing: Sara Earhart. In order of appearance: Mikhaela, Edge of Playground. Sara, Seeking Sara. Arianne, Stairway to STEM. Yenn, Yenn Purkis’ Books. Kylie, Life on the Spectrum. Shadia, Autism Actually. Kayla, @BeingKaylaSmith. Adam, The Proud Aspergian. Peri-Ann, Not Raingirl. Cynthia, Neurodiverse Woman. Olivia, Olive the Lupus Patient. Music credits: “Beyond the Line” by Benjamin Tissot, bensound.com. “Beautiful Morning” by Mixaund, mixaund.bandcamp.com”
Then, I will share my reflections on the experience. Enjoy!
Note: These are all people who have been actively trying to learn about Autistic people and how to better interact with and support us. Please be understanding and forgiving of anything like using person-first language (“person with autism”), using functioning labels, or anything of that nature. All of those being interviewed are being gracious enough to agree to put themselves in a vulnerable situation, and I really appreciate that. Thanks!
High School Friend: “Billy Bob”
Note: My friend has asked to use a fake name in this interview. True to her hilarious nature, she has chosen to be called “Billy Bob.” I want to thank her for stepping up to do this interview and agreeing to be the solo interviewee this round!
1) What were some of your initial thoughts when I told you I might be Autistic?
Billy Bob: When I first heard that you might be Autistic I was kind of surprised and shocked only because I had no idea about most of the things you’ve been going through. Although you did share some things that were happening in your life, I wouldn’t have guessed that Autism could be a factor.
2) You’ve known me for a long time. What did it feel like to find out how much of myself I had (unintentionally) been hiding from you?
Billy Bob: So kind of similar response to the question above with being shocked and surprised. I was also sad to know that you have been hiding this for a while and didn’t share with friends who care about you, but I could also understand why you didn’t share sooner.
I can only imagine how hard it was to be going through this newfound informationby yourself or with only a few people aware. I also know it is not easy to open up about personal things. It is hard, scary/nerve-wracking, personal, new to you, and you’re still trying to process and understand it all.
3) Looking back at me in high school years, what kind of things make more sense to you now?
Billy Bob: Well, I know we didn’t talk too much in the beginning of high school and it wasn’t until we were in summer gym classes together that we really started to speak more and become friends.
I always thought it was cool that you were in choir. I admired people who could not only sing, but also have the guts to perform in the school plays and color guard. I think we really bonded when you asked me to read the book you began writing.Reading and writing were always things you loved to do since I’ve known you and it hasn’t changed because now you’re writing your blog!
So looking back you were still reserved kind of like you are now, but not as much as before. With Autism, I know it must be hard to openly talk to and be around people so being reserved like that makes sense now. You also have always enjoyed music and I think it was a way you could escape from social interactions without even intentionally knowing it.
4) What kind of positive changes have you seen in me in the last year? How have I grown or changed?
Billy Bob: I have seen so many positive changes in you, not only this past year, but since I’ve known you. Since opening up about your Autism you’ve been able to share a part of yourself that you were afraid to share (which, like I said before, you have every right to be nervous!) Like I stated earlier it is not easy to open up about something that is new to you for the fear of being judged, not understood, etc.
I’m so grateful that we’ve become closer every year of our friendship and still continue to become closer. And we’ve learned a lot about each other and our similarities by continuing to talk and by even playing that silly Facebook quiz game (the one where we had to guess each other’s responses lol).
Also having the courage to start a blog to talk to the world about what you are going through is amazing. I don’t think the Sara in high school would have done that so I’m so proud of you for coming so far. And you even spoke on a podcast, which was fantastic and also a new experience you’ve conquered! So keep it up because you’re making wonderful positive changes. ☺
5) What do you think about Seeking Sara? What kinds of things are still unclear to you? What would you like me to write about in the future?
Billy Bob: So I think you already know this but I think Seeking Sara is wonderful. It is a great way to express all your new adventures and everything that you’ve gone through in this journey of life. It is also a great way to showcase your photography because I really like your pictures.
You’ve been able to explain what you are going through so as of right now there is nothing unclear for me, but if something comes up you know I will ask lol. And keep writing the content that you have because I cannot wait to read more! ☺
A huge, huge thank you to “Billy Bob” for being so gracious and agreeing to do this interview, especially alone! You are fantastic!
The next interview will be with my wife! Stay tuned for that next week.
Thanks for reading!
[image description: A picture of yellow flowers with a big white rectangle placed on top of it. Text on a blue box reads, “Interviewing A High School Friend About My Autistic Self.” The words “New Friends” are written in yellow while the rest is written in white.]
I recently had the awesome opportunity to be interviewed by Yenn Purkis–Autistic author, blogger, presenter, and advocate. Their podcast is called The Yenn Purkis Autism Show (Formerly known as Jeanette’s Autism Show at the time of recording.)
In this episode, we chatted about blogging, the Autistic community, identity, and more!
Click the link or picture below to be redirected to the podcast! Both open in a new tab. (WordPress isn’t allowing me to embed the podcast here for whatever reason.)
[Featured image description: On the lefthand side is a picture of Sara in front of Niagara Falls. Sara has sunglasses on top of her blue hair, noise-cancelling headphones around her neck, and a plushie duck in her hands. On the right is a blue box with the words “Podcast Interview. Talking about Autistic identity and community, blogging, gender, and more! The Yenn Purkis Autism Show: Sara Earhart” A small drawing of Yenn is pictured in black and white. They have their eyes closed and are smiling widely while holding a framed picture of their apartment.]
I recently had the opportunity to chat with Dr. James McGrath, senior lecturer at Leeds Beckett University and author of Naming Adult Autism: Culture, Science, Identity. James was kind enough to grant me an interview about his fabulous book.
SARA: Hello, James! Thank you for agreeing to do this interview about your book. For those readers who don’t know you, can you please tell us a little about yourself?
JAMES: I’m a senior lecturer in Literature and the Humanities at Leeds Beckett University. I was diagnosed autistic in my thirties. In some ways it was a shock, as well as a relief – but I’d always known there was something ‘different’ about most other people. They didn’t seem to need time being silent or being alone each day in the way I did, and their particular interests – sport, television and dating – usually seemed quite odd to me.
My first book has recently been published, and it’s called Naming Adult Autism: Culture, Science, Identity. It’s an academic study, but is also openly autobiographical at different intervals. As well as the scholarly side of things, I write poems. On and off, I’ve been getting poems published in journals since I was 19. One of the book’s chapters, called ‘Title’, is a three-line poem. The other four chapters are about 20,000 words each but divided into themed parts.
As well as looking at novels, poetry, films and songs involving autism, the book experiments with literary critical approaches to the science of autism, which I’ll say more about later.
SARA:It’s easy to see that Naming Adult Autism: Culture, Science, Identity is a truly throughly-researched and work-intensive labor of love. How long did it take to write from envisioning to publishing?
JAMES: It took me three years and three months from signing the publisher’s contract to delivering the manuscript. But many of these thoughts had been with me since childhood, before I knew the word ‘autism’. It’s not my first publication on the subject, but it is my first book. And Naming Adult Autism is the first time I’ve written ‘publicly’ about autism and my own life.
I love your expression ‘work-intensive labor of love’, by the way! It was certainly very intense. Writing the book became absolutely everything to me. So on good writing days, everything felt great – and on bad days, if I couldn’t properly focus, everything felt terrible.
When I held the first copies of the published book in my hand, I felt good but strange. The greatest highs in the whole experience – in my entire life, even – came in the writing process itself, and in the feeling of just breathing in at the end of a good day with the writing.
SARA: What was that process like for you and how did you handle any executive dysfunction challenges?
JAMES: Executive functioning – being able to do the things I need to (from major work tasks down to seemingly trivial things like shopping) has always depended on me having a kind of routine. Many autistic people frequently struggle with executive functioning. But if I can settle into a routine, these things become much easier. The problems come for me when routine gets thrown.
The writing took a year to get going, which scared me. The delay was largely because of my struggle with some large, unexpected circumstances. Two days after I signed the book contract, my then-landlord announced I had to leave the attic flat that had been my home within two months, so he could sell it. I was utterly lost, and it’s a painful time to remember. The practicalities of finding a new place to rent, of waiting to find out if I had got the place I wanted, and of packing the chaos of my life into box after box, were catatonically stressful. The most heartbreaking thing was having to say goodbye to a lovely cat called Mousey who lived in the house.
The sheer – I mean sheer like a cliff – personal, practical and emotional upheaval for an autistic adult being forced to leave their home can be unspeakably distressing. And that was very much the situation for me. It took over a year for the disorientation to settle, because the aftermath of the move was almost equally difficult.
The problem I had was that having moved quite abruptly to a new living space, I just wasn’t settling in to any kind of routine. The light in the room felt wrong, and therefore everything felt wrong. I’d attempt new routines but they just weren’t working. My heart just wasn’t in them.
What I needed was a pattern, a template experience of a day – or even just of, say, a Friday or a Wednesday – which I could enjoy once and then repeat and vary as felt right. But I somehow couldn’t get that to happen. Not having a routine meant having nothing clear to look forward to. But amidst all that chaos, a quietly life-changing realisation occurred for me.
One older friend, a poet and academic who once had been my undergraduate tutor, asked if I would look after his house and cat for a series of weekends while he was away, which I did. With that experience of being in a different space for a clearly set time, routines became more possible – and that was key to how I properly got focused on the book. It was simply a matter of knowing: ‘I’m here for forty-eight hours, and all I’m going to do is write.’ I was thirty miles away from all the usual distractions and in this very atmospheric, sunlit old house with a long garden and a wood cabin at the end, beside the river Skell in North Yorkshire.
In spending weekends in that wood cabin I began to feel calm again. It was what gave me the template for a new routine I could enjoy and which I could – crucially – look forward to. I’m fortunate to have that experience, and I’ve since looked after the house and cat and cabin every summer. Most of the book was written there, as were many poems. It’s also a real delight to have friends come over to the house and cabin in some of the evenings.
I’m glad to say that I’m now much more contented in the space (another attic) where I live, in a shared house with two really good friends. But it did take a long time (and many repositionings of furniture in relation to light and shade) to reach this point.
During university semesters, I tend to get my writing done very, very early in the morning, usually starting at two. I can work that if I go to bed by about eight in the evening. It gives me about five hours of writing time before walking into work, though I can’t usually do the nightwork more than three mornings a week before tiredness catches up, and I start to turn off my alarm in my sleep.
SARA: You yourself are Autistic. How important do you think it is for Autistic people like you and me to be heard and seen, both by allistics and our fellow Autistics?
JAMES: Across psychiatry, society and culture, autistic people have had their critical perspectives and even just their voices ignored for way too long. Even now, although progress is visible, it’s still mostly neurotypicals (or allistics) who exercise almost all the power over whether, when and where autistic people are given a public voice.
Although Naming Adult Autism is frequently an angry book in critiquing the mainstream coverage of autism, the parts within each chapter move increasingly towards more progressive or often more radical texts. There are sequences on work by autistic poets (Les Murray and Joanne Limburg), on novels by Douglas Coupland (who in published interviews identifies as having Asperger Syndrome), as well as on some really valuable novels by authors who, so far as I’m aware, do not identify as autistic (Clare Morrall, Meg Wolitzer).
The most provocative novel dealt with was Margaret Atwood’s Oryx and Crake. I’ve huge respect for Atwood as a writer, so those pages were hard to write. Seeing autism conflated with a pathological opposition to the arts and to fiction itself in a major literary novel was grim – though it did help to galvanize some of the book’s main standpoints.
I wanted to write about some less obvious texts in relation to autism, such as E. M. Forster’s novel Howards End, The Who’s 1969 album Tommy, Ricky Gervais’s The Office, and the Michael Andrews/Gary Jules song ‘Mad World’.
A most important thing, though, was to connect with and reflect on critical writings on autism by #ActuallyAutistic authors, such as Jim Sinclair, Damian Milton, Laurence Arnold, Sonya Freeman Loftis, Dinah Murray, Wen Lawson and Gillian Quinn Loomes.
But despite the rapidly expanding wealth of art and scholarship from autistic people, how often are any of us are given space for expression in the wider media? It does sometimes happen, and I was delighted this spring to be interviewed for BBC Radio 3’s poetry programme The Verbwith the poet and academic Kate Fox. Thanks to a genuinely forward-thinking producer in Faith Lawrence, Kate and I were given a space to properly challenge some of the misconceptions around adult autism. But such opportunities are rare.
It’s as if the media prefers autistic adults to reinforce existing stereotypes, and that’s something I challenge at length in the book. Autistic adults who question (or even mention) the status quo of, say, Simon Baron-Cohen’s models of autism are actually seldom quoted in the media. Similarly, academic research on autism by actually autistic scholars – despite being peer-reviewed and published – is far too rarely cited in psychiatric publications by non-autistics.
So yes, it’s vital for autistic individuals to be given greater media access: as a human, social right (of course) but also in order to redress the ways in which we have been, and still are, publically misrepresented.
Cultural misrepresentation leads only to further difficulties for autistic people. That’s a main concern of the book. We are expected to be good at science, IT, or nothing. Professionals who influence our lives, and who influence the possibilities of an autism assessment, sometimes fall for these misrepresentations themselves. So I’d love it if some professionals could read the book.
SARA: You note that the “Adult Autism-Spectrum Quotient Test” is skewed (For example, Autistics are not supposed to “get” fiction, according to that test). Can you talk about that a bit?
JAMES: The Adult Autism Spectrum Quotient (AQ) questionnaire is the most widely-disseminated screening tool for adult autism. It consists of 50 statements, with which we’re asked to agree or disagree. The AQ test was launched in 2001 by the University of Cambridge Autism Research Centre (UCARC) after being piloted in the late 1990s.
The test’s principal author was Professor Simon Baron-Cohen: one of the world’s most influential but also most divisive autism researchers.
Anyone with passing interest in adult autism is likely to have seen Baron-Cohen’s questionnaire. It’s widely accessible online and is reproduced in many books, journals, newspapers and magazines. It’s worrying to consider that some people’s knowledge about adult autism probably stems only from reading that questionnaire.
Now, I must emphasise (as Baron-Cohen does) that a high score on this test alone does not warrant actual autism diagnosis.
Crucially though, the test canbe used by general practitioners – the gatekeepers of formal autism assessment for many people – in deciding whether or not to refer a patient on to an autism specialist. UCARC’s 2005 report on questionnaire’s validity concluded by advocating its value to general practitioners.
But what is less well-known is that in additionto being designed for a practical purpose within widespread medical procedures, the 2001 test was constructed according to a distinct research agenda. It is towards that agenda that certain statements on the questionnaire – and the scoring of their answers – are skewed. Scientifically unsound.
In the book, I go into very, very close detail on several problems with the questionnaire’s design and uses. But here, I’ll try and keep it brief:
Professor Baron-Cohen designed the test along with Dr Sally Wheelwright at UCARC. Preliminary tests of the questionnaire’s validity were conducted by the two authors, plus three undergraduates named as co-authors.
But as well as being created to ‘measure’ an adult’s autism ‘quotient’ numerically, the other purpose was to test, if not prove, Baron-Cohen’s headline-friendly theory (launched 1997) that scientists and mathematicians show more autistic traits than the general population.
The questionnaire is strewn with statements relating to aptitude for STEM subjects: science, technology, engineering, mathematics.
Each of the questionnaire’s answers that could suggest interest in numeracy are scored positively (raising the respondent’s autism quotient ‘score’). But each statement indicating engagement with the arts (especially reading fiction) is scored neutrally or negatively.
So, the AQ defines numeracy as an autistic trait in its own right. Interest in the arts, conversely, is assumed to be the exclusive province of neurotypicals!!Yet, a possible result is that some mathematicians may have higher AQ scores because they are mathematicians – but not necessarily because they are ‘more’ autistic.
Meanwhile, an autistic person who happens to enjoy fiction but not mathematics will come out with a lower autism quotient. And there are potential ramifications of these results.
In 2001, Baron-Cohen et al reported on the trials of the test: ‘Scientists (including mathematicians) scored significantly higher than both humanities and social sciences students, confirming an earlier study that autistic conditions are associated with scientific skills. Within the sciences, mathematicians scored the highest.’ (Baron-Cohen et al, 2001, p.5)
Yet that just means that mathematicians score higher in a questionnaire that includes statements relating to numerical thinking. The earlier study apparently ‘confirmed’ here was a 1998 ‘Research in Brief’ publication led by Baron-Cohen and based on Cambridge University students, but that study itself was quite sketchy, as explained in the book.
In a 2012, in a TED talk proclaiming that autism may be linked to ‘minds wired for science’, Baron-Cohen implied that this idea was supported by the 1944 research of Hans Asperger. ‘He wrote’, states Baron-Cohen, that ‘for success in science, a dash of autism is essential’. In fact, Asperger said something significantly different. In 1977 – reporting on the adult lives of his former child patients – Asperger asserted: ‘it seems that for success in science or art a dash of autism is essential’ (emphasis added).
Asperger (1944) remarked on the flair some autistic children show towards maths and science, but in the same paper, described how others showed distinguished abilities in relating imaginatively to paintings and stories. One of Asperger’s most detailed profiles of an autistic person (ignored entirely by Baron-Cohen) describes a boy named Harro.
I wrote about Harro in the book. I think Asperger’s summary of Harro’s reading skills deserves the attention of anyone who believes that to be autistic is to be somehow indifferent to reading fiction:
‘one could notice clearly that he read for meaning and that the content of the story interested him … his reading comprehension was excellent. . . . he could say what the moral of a story was even though the moral was not explicitly presented’ (original emphasis).
As demonstrated from novels by Margaret Atwood to a sitcom such as Big Bang Theory – plus countless broadsheet articles citing Baron-Cohen – the association of autism with STEM has become not just a stereotype, but an expectation placed on many autistic people. Autistic scholars in the arts, humanities and social sciences may be a minority – it’s too early to say – but we are nonetheless here.
SARA: I absolutely love fiction; Fantasy and SciFi are my favorite genres! What are some of your favorite fiction titles and genres?
JAMES: I can’t imagine life without fiction. I’ve said it before, but for me, reading novels is a way into the world – a way of learning about people (including myself, when I identify with fictional characters). Reading a novel is far easier for me than watching a film. Unlike with films or TV, we can read at our own natural pace, and that for me makes all the difference.
Fiction has been deeply important to me since the age of hearing stories before I could read. One of the first stories I remember being delighted by was Ursula Moray Williams’ Gobbolino the Witch’s Cat. My sister and I had a tape of it, read by Sheila Hancock.
The novels I wrote about in the book were obviously there because autism itself occupies something like a ‘genre’ in fiction. Even so, in making notes on every page and just immersing myself in the reading, I absolutely fell in love with those novels – especially Clare Morrall’s The Language of Others and Meg Wolitzer’s The Interestings.
I don’t tend to seek novels by genres, so much as themes – and houses are major themes in many of my favourite books. I wish it was recognised more often in society, culture and medicine, this thing of how almost unfathomably hard it can be for an autistic person to have to leave what has become their own home. In the book, there’s a footnote called ‘World is Sudden’ (a paraphrase of Louis MacNeice) where I try and address it, but there’s much more to say.
One of the most memorable things I’ve read on this subject is from the children’s writer Philippa Pearce, author of one of my favourite books, Tom’s Midnight Garden (from 1958). Philippa Pearce was not, to my knowledge, autistic, but what she said really speaks to me.
In an interview she did with a publishing magazine, which I read in summer 2000, working in a bookshop, Philippa Pearce described how she felt when the mill house in which she had lived as a child was sold.She said something to the effect of: ‘I had what could be called a nervous breakdown.’
Many of my favourite writers deal with ideas and experiences of home and houses. As a child, the ‘Green Knowe’ series by Lucy M. Boston (based on her own house) really enchanted me. The Green Knowe stories involve magic and ghosts, but it was really the sense of the house as a place and time that I read them for.
Also on themes and genres, my PhD thesis (completed some years before my formal autism diagnosis) was called ‘Ideas of Belonging in the Work of John Lennon and Paul McCartney’. Again, I focused closely on themes of ‘home’ – usually as something that has been left or lost. I also researched and wrote a lot from a social history perspective about the two main houses in Liverpool where Lennon and McCartney grew up. An important philosophical book for me at the time was Gaston Bachelard’s The Poetics of Space.
In research and writing at length about autism science in the book, being able to quote from literary authors – mostly poets – was like an intake of oxygen. Percy Bysshe Shelley, Oscar Wilde, Aldous Huxley and most of all William Blake were vital to me there. But the most empowering literary and philosophical influence was Simone de Beauvoir’s chapter ‘The Data of Biology’, at the start of The Second Sex. (Before beginning writing this book, I published a playful poem imagining a conversation between Beauvoir and Baron-Cohen called ‘Ventriloquy Soliloquy’, written on my first Christmas day alone in Leeds).
SARA: Chapter 3 of Naming Adult Autism considers the obstacles created recognizing Autistic girls and women. Can you please talk about some of these obstacles?
JAMES: One reason why I’m so glad you’ve asked me to do this interview Sara is because (like many people, clearly) I really admire – and have learned from – your blogging on this topic.
Another author on this who I highly recommend is Lesley Bonneville. A novel I read recently that deals with autism and gender brilliantly is Ta-Ra, Alice: Odyssey on a Shrinking Raftby A. Robertson.Ta-Ra Alice was published too late for me to write about, but I’ve posted a 5-star review of it on Amazon.
Chapter 3 of Naming Adult Autism is called ‘The New Classic Autism’. Obviously, for something to be both ‘new’ and ‘classic’ is oxymoronic, and I use the term ‘new classic autism’ to underline both the superficiality and, I hope, the transience of a dominant pattern in early 21st-century autism narratives.
Basically, Chapter 3 confronts (and sometimes rages at) how certain wider power structures are shaping both cultural and scientific notions of autism. In most – and certainly the most lucrative – ‘portrayals’ of adult autism, science and culture present us with a white, professional-class, able-bodiedmale.
In terms of autism and gender, one of the most dubious but still influential models is Baron-Cohen’s much-publicized theory of the ‘extreme male brain’.
There numerous scientific inadequacies to Baron-Cohen’s extreme male brain theory. It’s important to unpack these because, although it’s great that Baron-Cohen and the UCARC are now at last placing more focus on women and autism, the ‘extreme male brain’ idea remains an all-too-familiar cultural and even medical reference point.
UCARC’s equation of autism with ‘maleness’ leans very heavily on the idea that autism is fundamentally characterized by lack of empathy. And according to Baron-Cohen, empathy is a female trait while systemizing is a male trait. That’s the crux of how the theory of autism as the ‘extreme male brain’ begins. The assumption being: autistic people lack empathy, and empathy – according to Baron-Cohen – is a female trait. Hence, the extreme male brain terminology. But for now, ‘extreme male brain’ is not a theory: it’s a metaphor. And metaphors, as discussed elsewhere, tend to be what we use when actually there is no clear or affirmative answer.
Baron-Cohen is a key researcher in the Cambridge-based Fetal Steroid Hormones project, publications on which announce links with prenatal testosterone levels and ‘autistic traits’. But actually, none of the people in the research sample were themselves autistic. The autistic ‘traits’ reported in those articles (reviewed in the book) are therefore tenuous.
It’s also noticeable that UCARC’s publications on autism, fetal hormones and biological sex are – like the earlier studies they cite – oddly less interested in the ‘female’ half of the human brain. The research is both quantitatively and qualitatively imbalanced.
SARA: You make a big push for “[…] promoting deeper, greater dialogue between the humanities and the sciences regarding the meanings of autism.” What are some ways we can foster and encourage discourse, mutual respect, and cooperation between the two regarding Autism and Autistic people?
JAMES: It sounds an ambitious aim, I know. But historically, the division between the study of ‘the sciences’ and ‘the arts’ is actually quite recent. I think the obstacles towards such greater dialogue are not intellectual, but merely practical. But they can certainly be overcome. Things like conference panels that welcome research both from the sciences and from the humanities (and social sciences) on autism are very slowly starting to happen, but they need to be much more frequent – and more accessible to the autistic population.
And also, simpler still – just reading work on autism from other disciplines. So I think this further dialogue is most definitely achievable – provided we’re all willing to take a few risks in reassessing our own disciplinary vantage points. And what’s the point in being an academic, if it isn’t to keep on questioning our own ideas in search of new knowledge?
Today I posted my first ever official Seeking Sara Youtube video! Hooray!
Why come out again, you ask?
Thank you for asking, kind stranger! Well, back in April, I came out as Autistic to most of my family and friends by sharing my Seeking Sara diagnosis story on Facebook. But I really didn’t feel free to be fully public at that point. That ends today with my first YouTube video! Please check it out, give it a like, and subscribe to my channel.
Below the video you can find what I wrote on my personal Facebook about why I feel the need to be out and public about being Autistic!
This is what I posted on my personal Facebook:
Ok, time to rip the bandaid off and never look back! 🎉🎉
I am Autistic. (Yes, you read that correctly.)
Back in April, I “came out” to a lot of people through my blog, “Seeking Sara: An Autistic’s Journey Toward Self-Discovery”, but I wasn’t quite ready to be completely public about it.
I had originally shared the blog because I was feeling like I carried such a heavy burden around with me; masking Autistic traits is exhausting (but sadly common) and hiding such a huge part of my identity had begun to take a massive toll on my mental, physical, and emotional health. 😖
Today feels like taking off chains and shaking out my limbs for the first time in ages. I am Autistic, but even I didn’t know for the longest time. For as long as I can remember, I’ve had intense sensory issues, meltdowns and shutdowns, bouts of selective mutism, anxiety, social phobia and processing difficulties… but I had no idea WHY. In late 2017 I was finally diagnosed and suddenly everything made so much sense.
Since diagnosis, I have grown more as a person and learned to love myself more than in the past 5 years combined. I am learning to be authentically, proudly me. I am diagnosed with Autism Spectrum Disorder (not Asperger’s), and I prefer to be referred to be referred to as “Autistic” or an “Autistic person,” NOT “person with autism.” This is just my preference and I hope you will respect that.
I get that some people may be skeptical, probably because what we see about Autistic people in the media is oftentimes a bold-faced, stereotypical lie full of myths. Or because I have done a damn good job of (unintentionally) hiding my Autistic self. But you know, my coming out isn’t really for you.
This is for me. ⭐ This is so I can begin to breathe again. This is so I don’t have to constantly regulate my behavior in public. So I don’t have to try to ignore overwhelming sensory stimuli and resist the urge to stim (rock, flap my hands, pace, tic, hum, sing, etc. to help with sensory regulation.) Over the next few months I might start seeming “more Autistic.” This isn’t actually a change; this is just me finally growing comfortable enough to stop masking my traits so hard and just allow myself to be naturally me. I’m done hiding. I no longer feel the need to try so hard to shove myself into a little mold I’ve cobbled together from observing neurotypical peers and characters. I am not them.
I am ready to be unapologetically me—take me or leave me. I’m ready to be publicly me. I’m done tiptoeing around and hoping not to be seen.
Lastly, if you feel so compelled, please feel free to leave a lovely comment or sticker to show your support. Message me, text me, email me, send a carrier pigeon… whatever works for you. I’m hoping being open will help explain why I’m not often at social events and why I rarely take initiative with socializing (apart from being painfully introverted.)
If you read to the very end, props to you and thank you. 🎉😍❤️✨
tl;dr I’m Autistic! 🎉 Deal with it. 💪
Phew. A huge sigh of relief. This is a huge step for me, perhaps bigger than the first phase of my coming out back in April.
I’m ready to burst out through the gate and go be me!
[image description: A photo of an age-worn gate in front of a Japanese temple. The sun is casting interesting shadows and the gate is intricately designed with swirls and cherry blossom shapes.]
As promised in 17: Empathy (Part 1) and 18: Empathy (Part 2), I’m now tackling the positive aspects of being an “empath,” or hyper-empathetic person. In Part 1, I wrote about the stereotype that Autistic people don’t experience empathy and how—not only do I empathize—I actually experience hyper-empathy. In Part 2, I focused on media consumption and how careful I have to be with what I watch, listen to, or read due to hyper-empathy. But the focus of both posts was on the negative or tiring aspects of being hyper-empathetic and how it can be a burden. Today I really wanted to address the wonderful side of being so sensitive to others’ emotions.
I experience positive emotions strongly too
In Empathy (Part 1), I wrote that “I feel other people’s pain so innately that it can be so debilitating I have to try to unplug my feelings and let myself grow cold and unattached to survive.”I also described “taking on other people’s pain.” But it’s not just the negative or draining emotions that my hyper-empathy exposes me to! I get to experience the positive ones too!
When someone around me experiences a strong positive emotion—whether they be on screen or in my life—I am affected. If someone is feeling sheer happiness, I soak up the light from that emotion. I can become giddy and joyful when someone near me is in a similar state. I can cry from happiness and flap my hands with excitement when a character I love is happy. I sometimes have to clamp down on my emotions so that I don’t cry happy tears (or otherwise outwardly show just how happy I am) and embarrass myself when riding the waves of someone else’s happiness. The more deeply connected I am to someone, the more affected I am. It’s wonderful to experience such sincere happiness when others are happy.
I connect deeply with characters in media and my soul is moved by music
In Empathy (Part 2),I wrote about the negative ways that media can affect me and that “[d]isconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.” But just as I am positively affected by real-world emotions, I am also affected by positive emotions in media.
I sometimes connect with characters in books, TV, movies, and games so strongly that it feels like I have lived their lives. I hope some people reading experience what I’m talking about and can relate. It can take me days to disconnect myself from a good book and it leaves me with more insight and understanding about other peoples’ lives and experiences. It’s an enormous gift to be able to carry over what I learn in books into reality and further empathize with others.
The emotion in music often moves me to tears and fills me with such a deep peace and tranquility that I can physically feel something in my chest fill with happiness. Sad music can unplug a deep sadness within me so that I can begin addressing it; joyful music can alter my state of mind and leave me feeling energized and full of possibility. Music moves me in ways that I can’t even really describe fully in words.
I’m great with kids
I started babysitting around age 12 and loved it straight away. From there I became a part-time preschool gymnastics teacher, then a counselor’s assistant at a camp, an assistant teacher, and finally an English and reading tutor. I love being around kids and young adults, and I think one reason I’m so suited toward childcare and teaching is my ability to empathize.
I told myself when I was young that I would try my best to never forget what it felt like to be a child: the changes, the anxieties, the frustration, the lack of control… and for the most part, I feel that I’ve stayed true to that promise. I can empathize with kids and speak with them from a place of equality whenever possible. Showing true caring for a child means that I’m often let inside their worlds to see the joys, the anxieties, the excitement, and the stresses…and I cherish that gift!
I’m a good partner
My ability to empathize deeply makes me a patient and loving partner. When my wife is happy, my mood is positively affected! When she’s unhappy, I can empathize deeply with how she is feeling and come up with useful ways to help and support her.
I am a good listener and ally to my friends and family
As I mentioned in previous posts, my ability to hyper-empathize means that friends and family often confide in me. While this can be tiring, it’s also a gift that I truly cherish. I experience great joy knowing that my loved ones feel they can trust me to listen to things that are going on in their lives.
I can empathize with strangers
When I was 7 or 8, I heard about a flood that happened in a different state in the US. There was one church that was severely affected so much so that members could no longer enter the building, much less worship there. I had never been there, never met anyone in the congregation, nor met anyone affected by flooding, but I felt such grief that I was moved to do something. I wrote them a letter and (with my parents’ help and permission), donated my entire allowance savings to their rebuilding efforts.
Around the same age, I decided that I would foster or adopt a child someday. Hearing about kids in the system broke my heart and I was adamant that I would someday provide a loving home to a child in need. (Someday, I hope this will be a reality!)
My hyper-empathy enables me to relate to and feel for strangers—people I have never, and may never meet. It makes me a compassionate, caring, and deeply sincere person, and I cherish this ability.
So there you have it: some of the many positive ways that being hyper-empathetic can actually be a wonderful thing and something that heavily influences the way I view and interact with the world.
[image description: Trillium flowers, white flowers with three petals and three stamens. There is one pale pink trillium at the center of the photo.]
Today is the day that I share my news with friends and family via Facebook. I was originally going to share my blog with everyone on Friday, but I’m too anxious to wait another day. *tries not to vomit*
One major reason I started this blog was to have a vehicle to come out to people about being diagnosed as Autistic. Masking my Autism has become so incredibly tiring and I’m really burnt out. I also feel like I’m hiding such a huge part of myself from the people I care about! (See: 6: Why I’m Writing This Blog for more on that.) I’ve been feeling pretty lonely and isolated lately and I want that to end.
So here we are. The story of how I got diagnosed.
Evaluation in Japan
I started my journey by accident in 2015.
I was working in Japan and seeing a Japanese psychologist (who’s fluent in English) for help with the grieving process after losing several people close to me. I’ll call my therapist “S” here for the sake of privacy.
Throughout the years I had sometimes wondered if I might be Autistic, but would pretty quickly decide that it must be impossible–I didn’t fulfill this criteria or exhibit that trait, etc. But I eventually stumbled upon some resources about how women and non-binary on the Spectrum often present very differently than men. (See 13: The Autistics Left Behind for more info on that.)
After delving into research about Autistic women, I tentatively started to let myself consider that I might really be on the Spectrum. I began to take some notes about my life and the way I experience the world as I continued to research about Autistic women. (The baby drafts of this blog!!)
I figured that someday–if I decided to be formally assessed back in the US–I would have all that stuff written down already.
But I didn’t bring it up to my therapist. I was too afraid that she wouldn’t know about women presenting differently and about masking. I was terrified she would immediately shoot me down without assessing me. (It’s not that I was set on being diagnosed as Autistic. I was set on being assessed accurately and thoroughly–whatever the result.)
So I continued to quietly gather information and write down my self-reflections without telling anyone. It was an isolating, but adrenaline-filled time.
It wasn’t until 2016 when I had been seeing S for a full year that things changed. My family had come to visit me in Japan and I showed them around several cities throughout the country, acting as both guide and interpreter. When we were in Tokyo, I experienced an intense bout of sensory overload that led to a subsequent meltdown. (You can read about it in 5: Sensory Overload & Control.)
When I returned from the trip and S asked how it had been, I finally told her. I told her about the sensory issues I’d been having more and more difficulty with, the meltdown in Tokyo, the social fatigue, the wondering, the doubting, the researching–everything. Our session ran over time as she patiently listened to everything spill out. Then I waited as she thought and chose her words carefully.
To my surprise, S had been wondering if I was on the Spectrum as well.
I was really taken aback. I sort of sat there in shock for a moment before a huge smile crept over my face. “Really??” I exclaimed, euphoria rushing over me. Iwas just so relieved that she was taking me seriously.
I printed out the notes I had been writing on my life and handed them over to her during our next session with an anxious excitement. When she returned the pages the following meeting, we talked them over in more detail and she agreed again that she suspected I was on the Spectrum. She asked me to continue writing and agreed that it would be useful if I chose to seek formal diagnosis someday back in the US.
Over the course of the next year, I wrote feverishly. I couldn’t stop. I literally couldn’t stop scribbling insights and realizations onto whatever surface was available. So many things started to make sense about my life and I felt such a sense of relief come over me.
But I still wondered. I went back and forth between good days when I felt more “normal” and questioned myself, and bad days when the truth was presented and reaffirmed right before my eyes through a meltdown or extreme social misstep. I bounced back and forth between denial and acceptance.
Finally, as my time in Japan came to an end, S presented me with a referral letter. At this point, she had seen me in regular sessions for two years, read up on recent research about Autistic women published in psychology journals, and read all of my writing.
On July 10, 2017, she handed me a letter which contained the lines:
“While I have seen Alex, she has shown similar characteristics to Asperger Syndrome and Autism, such as sensitivities to various stimuli, panic attack due to sensory overload, fatigue after social interaction, and need to follow schedule rigidly.”
She went on to write that she believed me to be on the Spectrum and was referring me for formal assessment and diagnosis.
That letter was such a gift. I knew that with it, I wouldn’t have to start over completely when seeking diagnosis. I knew I’d have someone in my court (so to speak) and wouldn’t feel like I was going into an assessment completely un-supported.
Assessment and Diagnosis in the US
I began seeing my psychotherapist, M, soon after I returned to the US to get some help adjusting to life back in the US and to address a possible eating disorder. (I will address my eating disorder in a future post.)
After a few sessions, I felt comfortable enough with M to bring up Autism and I gave her the letter from S. She said that she would evaluate me over time as she got to know me, so we continued our sessions and left Autism on the back burner.
By late November of 2017, I wasn’t writing my book anymore. Not for months. I felt like I had stagnated in my self-exploration and realization. After digging deeper, I realized that I was once again doubting if I was actually on the Spectrum.
I brought it up to M and we explored why I was feeling this way. During that session, we realized that–after the initial deluge of self-realization and discovery–I had adapted and started doing things in ways that minimized meltdowns and sensory overload. I wasn’t “less Autistic,” just coping with things better and going through a time when my traits weren’t as noticeable–even to myself.
Next session, she brought in the DM-5 (The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) and we sat down and went over the diagnosis criteria.
By the end of the session, I had my final, irrefutable proof. I am Autistic.
I was expecting my road to diagnosis to be an excessively difficult, expensive, humiliating, and stressful process. I know that for many woman, it can be.
I’ve been very lucky. This has instead been a journey of good luck, strange happenstance, and unexpectedly compassionate therapists.
After diagnosis, I’ve been hit with so many unexpected emotions: fear, sadness, excitement, regret, doubt, rage, determination, grief, elation… It’s been an ongoing, never-ending process as I come to terms with who I am.
I feel a sense of grief and loss that I wasn’t diagnosed sooner, but also an odd and bizarre relief that I wasn’t. I feel excited that I finally understand myself. I feel fear for the future and uncertainty as I wonder what the future holds. I feel an internal struggle as I decide what my new boundaries and limits are, and how many of those are worth pushing and how often.
Recently, my overwhelming feelings are isolation and insincerity. More than any of the other emotions, these are ones I can’t bear anymore.
As I share this blog, I feel utterly vulnerable and more than a little terrified. But I also feel excited. I feel free. There’s a freedom that comes with realizing that I can’t control how people react to my coming out. I can’t control it, so why worry about it?
No matter the reactions of those I care about, this is a truth that needs to be shared. It’s time for me to come forward and say, “I am Alex. I am Autistic. I am me.”
[image description: An image of a delicate bright pink rose that’s covered in raindrops.]
No, I don’t. I was officially diagnosed in 2017 with the DSM-5 (the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders) which was released in May of 2013. In this revised edition, “Asperger Syndrome” is now recognized as falling more clearly under the umbrella of Autism Spectrum Disorders. Asperger’s is Autism. So per this new criteria, my diagnosis was one of ASD. Thus, I am Autistic.
[Side note: Please don’t “correct” an Autistic person about how they identify themselves; it’s up to the individual. Many people will use Asperger’s, and that’s ok!]
Check out Amythest Schaber’s “Ask an Autistic #12: What Shouldn’t I Say to Autistic People” video. At about the 5:30 mark, they respond to the comments: “I think that you mean Aspergers.” followed by “Don’t you mean you’re a person with autism?” The whole video is great if you have time to watch it all.
2) Why do you use “Autistic person,” “Autistics,” and sometimes “Autists”? (Isn’t it “person with autism”?)
You can’t separate me from my Autism. It’s who I am! I am not a “person who suffers from/with autism” or even just a “person with autism.” Nor do I “have autism.”
I am Autistic. Period. It’s the way my brain is wired and the way I function. If I wasn’t Autistic, I would be a completely different person. I would have gravitated toward different friends, hobbies, interests, and studies. I would think, act, experience, talk, and function completely differently. I am proud of who I am, and I just happen to be an Autistic person!
“[W]hen we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.”
Find Lydia’s full article here, and her personal blog here.
There are a tonof materials on this subject (person-first vs identity-first language) written by Autistics. It’s essential to respect every individual’s wishes on how they wish to be referred to.
There’s lots more out there with just a quick Google search! Please listen to what actual Autistics are saying.
3) Why do you capitalize “autism” and “autistic”?
Again, I am an Autistic person and that is part of my identity. Many Autistic self-advocates choose to capitalize “Autism” and “Autistic” and note that it’s similar to the Blind and Deaf communities who generally prefer capitalized identifiers.