Looking for Seeking Sara? Don’t worry; you’re not lost. Turns out, a big part of the Seeking is discovering far more than I set out to search for.
I began Seeking Sara about a year and a half ago in April of 2018 as a place to verbalize my thoughts and feelings freely in a way that was both therapeutic to me and (hopefully) helpful to someone somewhere out there on the internet.
My blog was a place to literally Seek Sara. Who am I under all of the masking? What happens when I try to stop pretending and playing an uncomfortable role, like trying to walk in shoes ten sizes bigger than my feet?
For the most part, I’ve been extremely honest while I tackled a variety of sensitive topics from disordered eating, sensory overload, anxiety and depression, and chronic illness to interviews with my family and friends about my late diagnosis.
But there’s also been something I’ve been working through in the background, even long before I launched Seeking Sara. For about a decade now, I have been fighting my gender identity. But now, I’m ready to embrace it and come out again on this site—this time as non-binary or genderqueer.
Below is a Q&A to briefly answer some anticipated questions:
Name: Alex (gender-ambiguous) Gender Identity: Non-binary / Genderqueer Preferred Pronouns: they/them Please don’t use: woman, lady, miss, missy, girl, etc.
1) What will happen to Seeking Sara?
My blog will still be here and I will still be writing! Seeking Sara is transitioning to Autistically Alex. Aside from a change in title and design, Autistically Alex will still be run by me, Alex, and the writing will stay the same. (Well, hopefully it will continue to evolve the more I write…) I will discuss more queer LGBTQIA+ topics openly, but will continue other writing like my Sensory Series, eating disorder topics, sensory overload and meltdowns, etc. as well.
2) What’s Non-binary?
Depends who you ask, but for me… I feel wildly, painfully uncomfortable (increasingly so) with being labelled a woman, lady, miss, girl, etc. But I’m also not a trans man and he/him pronouns and man, boy, mister, etc. also don’t feel right. While I am more comfortable expressing and presenting my gender expression (what I wear, how I cut my hair, etc.) toward a more masculine appearance, I’m not a trans man. I’m non-binary, as in “not on the binary” of man and woman in regards to gender identity. I sometimes fluctuate back and forth, and could be considered gender fluid as well. Scroll down to number 6 below for links to more general information on trans/non-binary/genderqueer stuff.
3) Is that a real thing?
I can confirm that yes, yes it is. I tried for a solid decade to avoid calling myself non-binary. It was ten years of wondering what my gender identity was, wondering if I was a trans man, wondering why neither man or woman felt right, etc. When I found out non-binary is a thing, it instantly clicked, but I still fought against it for years. I’ve had to sort through a lot of internalized transphobia. Trust me. Non-binary is very much a thing and I am it. In fact, many many many cultures have/had more than two binary genders represented in their cultures. The scientific and medical communities also document and affirm the presence of more than two genders. Look it up.
4) Is singular they/them a thing?
Yes, and you use it too! If we describe someone in a mystery novel, the detective might say, “Whoever they are, they sure are smart. They covered their tracks so that no one would suspect them.” As someone who needed to learn to use they/them pronouns for other people, I totally appreciate that this can be super hard to learn to do! Even I still make mistakes. Give yourself time to get used to it.
5) How did you realize you’re non-binary?
A huge part of my journey was realizing how much I identified with a variety of media as a child and teen:
Disney’s Mulan, who sings Reflection
“Look at me…
I will never pass for a perfect bride
Or a perfect daughter
Can it be I’m not meant to play this part?
Who is that girl I see, staring straight back at me?
Why is my reflection someone I don’t know?”
Ranma 1/2, a comic book character whose sex changes when splashed with hot or cold water
Sailor Uranus, AKA Haruka, who is described as being “both male and female, possessing the strengths of both genders”, and who often presents her gender expression leaning toward the masculine side, though may be genderfluid.
Tamora Pierce’s “Song of the Lioness” book series where Alanna becomes Alan in order to pursue knighthood in a patriarchal world
The Takarazuka Revue, a real-life professional troop of elite Japanese performers who play both male and female roles in their elaborate plays and musicals
2016 Takarazuka King Arthur
Still image from Disney’s Mulan
A scan from Naoko Takeuchi’s Sailor Moon
To be clear, none of these media “made” me non-binary.They were a relief to read or see because I could relate to them. And loving and/or relating to these characters doesn’t automatically make someone non-binary or gender queer!
Another huge part of my self-discovery was realizing how much I dreaded getting dressed each day when I had mostly women’s clothing in my closet, along with accompanying gender dysphoria. Performing “feminine roles” (defined by society) and being called a woman, girl, miss, etc. increasingly causes a sort of nails on a chalk board feeling inside of me.
The last huge component for my journey to self discovery and acceptance was seeing people around me be openly genderfluid and queer. At a conference, a colleague wore a suit and tie and I thought, “…I can do that??” A friend changed their pronouns to they/them and I thought, “I’m so jealous… Wait, I am? Why?” A fellow Autistic blogger was courageous enough to change their site title and pronouns and I thought, “I want that freedom too.” A friend had the courage to change their name and pronouns and I finally spoke the words aloud, “Can I do this?”
Again, these people in my life didn’t influence me to be genderqueer. They gave me the courage to be okay with being myself, and I am forever grateful.
This is a huge part of why I am coming out. Not only is being closeted incredibly painful and draining, I can’t keep silent when others may find self acceptance and courage from me being out and authentically me.
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”
Ah, cold and flu season. Never fun for anyone, but doubly less so for many Autistic people. I’m currently experiencing a particularly nasty virus and it’s been an interesting time reflecting on sickness while in bed with a virus for the first time since my diagnosis as Autistic. I’ve noticed a lot and it’s helped me unpack a lot of shame (and a little trauma) from a childhood of fairly frequent illnesses.
[Content warning: brief mention of trauma (in last bullet point), mental health complications of being sick (second bullet point).]
So let’s unpack some of it together, shall we?
First let’s consider that many Autistic people have chronic illnesses and conditions like fibromyalgia, chronic fatigue/M.E., Ehlers-Danlos Syndrome, etc. We may seldom feel well on an average day, but may have learned to more-or-less cope with being chronically ill. Add in extra unpleasantness that only exacerbates our symptoms and we are champions for getting through any additional illness.
Consider also that many of us also have chronic mental health obstacles like anxiety, depression, PTSD, and more. The point made above applies equally to mental illness. We have a lot to deal with on a healthier day and added illness makes that fight more difficult.
Give some thought too to the terrible sensory components of being ill: inflammation, pain, fever/chills, aches, pressure, various disgusting fluids, the feel of a stuffy nose, sweating, headaches, being more overwhelmed by sounds, changes in sense of smell or taste, etc. For someone with Sensory Processing Disorder, that can be a lot. It can be so incredibly overwhelming and can induce panic and anxiety attacks.
When sick, routines get chucked out the window. Many Autistic people thrive on the familiarity, predictability, and comfort of routine. One of our biggest comforts that allows us to mask and tolerate a good deal is suddenly and completely thrown out the window!!
Brain fog from feeling unwell makes it incredibly hard to mask and communicate. Masking and communicating as an Autistic person can be a near-constant game of mental gymnastics and being sick makes it even more difficult to play that game.
Everything listed above puts us several leaps closer to meltdowns and shutdowns. People who might ordinarily have a few a year might find themselves much more likely to have them. (Also see my piece on 2: Meltdowns & Pillars to understand why this is.)
We may experience extreme changes in our ability to do things we normally can. We may struggle to speak, regulate or identify emotions, eat unfamiliar foods, avoid meltdowns, communicate efficiently, etc. And those abilities may change rapidly and often while sick.
Lastly, consider the fact that many Autistics may have some level of trauma associated with being ill for a vast variety of reasons. I myself had several horrible bouts of illness as a child that were frightening for me. I also have gone through more medical testing than many people twice my age and things associated with being ill can make me incredibly scared and childlike.
Phew, that’s a lot going on, right??
So what can we as a sick Autistic or a caregiver of a sick Autistic person do?
1) Validate and praise
Really look at the list above of reasons why being sick as an Autistic might be extremely challenging:
-If you are being hard on yourself, please try to be patient with yourself and validate your feelings. It’s really hard to be sick. You’re doing well, and you’re going to get through this! Make a list of things you’re doing well: taking meds, sleeping a lot, drinking fluids, keeping calm, etc.
-If you are caring for an Autistic, please have patience. We might seem “dramatic” or “childish” from your perspective, but I challenge you to exercise empathy (lol here) and patience as you imagine what we may be going through. Validate the Autistic’s experience by saying things like “This is a really hard thing that you’re going through, but you’re doing such a great job. I’m proud of you for hanging in there.” Praise the efforts of the Autistic, even if they seem like small things to you. Do NOT make comments belittling the experience. If you need to, step away for a while (when safe) and practice some self care until you are calmer.
2) Consider temperature, texture, and taste
When ill, the very best things for me personally to combat the unpleasantness of sensory discomfort are the three T’s:
Temperature: Using a cool washcloth or a heating pad can give me some feeling of control over my body and my pain. Drinking a hot or cold liquid can also help to ground me and take some panic away. Taking a shower or bath can help majorly too.
Texture: Soothing stuffed animals, squishing silly putty, wearing fuzzy PJs, etc. are all small things that can make a big difference in keeping calm.
Taste: Using hard-candies like peppermint can help remind the body to stay present! (Be sure that you will not fall asleep and choke!) Sweet drinks or teas help me a lot too as do flavored things like Jello or similar.
3) Make a surrogate routine
Keep whatever you can in a routine–mealtimes, bedtime routines, etc. But of course many things will not be able to happen as usual. Try to make a temporary schedule with similar activities. For example, schedule times to read together when English class would normally happen.
If that fails, make a temporary schedule anyway! Examples of things to include could be: take temperature, take medicine, drink fluids, watch TV show, sleep, rest time, Skype friend/family, shower or bathe, sensory time, etc. Knowing what’s coming up with some degree of certainty can help so much and it’s great to have a reminder of when you need to take medicine and when you last drank fluids.
4) Chart a sick calendar
For whatever reason, I know logically that I will get well, but on some level, I don’t. Being sick is such an all-consuming, exhausting, and sometimes scary thing for me. I need reassurance that I will get well soon.
One thing I suggest is printing a week calendar and asking a loved one or doctor to help write out things like when the illness started, benchmarks for when the Autistic will probably be able to do certain things again, and a goal when they will probably feel much better. Feel free to make the benchmarks a period of a few days if you worry about making false promises.
Knowing how long you have to endure something is the biggest step toward tolerating it.
5) Make being sick less awful
Pamper yourself or the Autistic. Watch some TV or a movie. Eat something yummy you normally save for special occasions. Play some video games.
Now is a time for rest and relaxation. Put off whatever you can until another day. Those emails will still be there when you’re well. So will school projects and deadlines. If something is overwhelming, put it aside and do something to “indulge” in being sick: take naps, play games, etc.
When I first started blogging, I had no idea that there were some simple steps I could take to make my posts much more accessible to my audience. I began adding descriptions to images on WordPress and Twitter and found that it’s really simple. I (naively) figured that most sites must be describing images that way. Then I met my friend Elyana who helped me test run some Voiceover software on my phone and I became painfully aware of how inaccessible most images are on the web.
Elyana has been gracious enough to teach me some basics about creating a more accessible space for visually-impaired and blind people on the internet, and she agreed to do an interview on the subject. I hope that you will take her words to heart and follow some easy steps that make the difference between accessible content and inaccessible content.
Following the interview are some how to visual guides for sighted allies who want to learn how to make their content more accessible. Happy reading!
Accessibility Interview: Elyana Ren
1) What is a screenreader and how does it work?
Elyana: Screen readers give blind and visually-impaired people access to computers, phones, and smart devices. A screen reader is a software program that interfaces with an operating system to render the visual elements (i.e. what’s on screen) into text that is ‘read’ out by a synthesized voice or which can be read on a connected braille display. The screen reader user then uses the keyboard to interact with those elements.
I would like to take this time to point out that, while most screen reader users are blind or deaf-blind, this does not mean that some don’t navigate by using residual vision (with or without magnification software.) Likewise, most screen reader users just use speech to navigate, but many use speech and braille or only braille, in the case of some deaf-blind people. But the concept is still the same: screen readers take what is on screen and present it to the user in a format that is accessible to them.
Note: The following video was created by Sara to give an example of how a screen reader might read text and image descriptions. It is a highly abridged version of what most screen readers can do.
To navigate around a website, for example, the screen reader relies on the HTML code of the page to tell it how to ‘speak’ the elements to the user. Websites tag multi-level headings, links, form fields, buttons, images, and other elements, and screen readers can read that data to the user. If, for example, I were on the Seeking Sara blog, I could hit the letter H and my screen reader will jump from heading to heading, allowing me to scroll through blog titles in the same way someone would scan visually. Once I’ve found the title I was looking for, I can simply use a keystroke to click on it and then read it by either using the arrow keys (like one would in a word document) or using another command to jump from paragraph to paragraph.
The same concept is applicable to screen readers on smartphones and tablets, such as Voiceover for iOS. Basically, when a screen reader is enable on a smartphone, it adds a sort of overlay atop of what is shown on screen so that the user can hear what is under their finger before they click on it. Then, like with letter navigation on the computer, we can use gestures to have the screen reader read out different things, such as headings, words, or characters.
2) What kind of obstacles do you encounter on the internet? What sites are generally inaccessible for you?
Elyana: As mentioned above, screen readers rely on the underlying HTML code of websites to communicate to the user what is on screen so thatthe user is able to interact with that content. One of the biggest barriers to accessibility is when things are improperly labeled or not labeled at all. For instance, some sites are completely graphically-driven, meaning that all my screen reader will see and read back to me is a giant image — even if there is text visually on screen. I don’t know enough about web coding to provide exact details on how to fix this, but I have seen enough wonderfully accessible sites to know that it is completely doable.
Another thing that makes navigating sites a little more difficult is videos that autoplay. Not only is it distracting, but screen reader users usually rely on speech output, so it is very difficult to do anything if all I can hear is an ad for the latest game or something. Some web browsers do make it so that you can do a keystroke and it will mute the active tab, but not all of them (as far as I know).
3) What are some of the most accessible sites for you? What do they do that makes the difference for you?
Elyana: The best sites are designed inclusively. This means that they take the time to make sure that everything on their site is accessible not only to screen readers, but also to people with other accessibility needs. This means that everything behind the scenes is properly labeled but also that visual elements, like graphics, background and text contrast, text size, and font choice are also taken into consideration.
4) What is alt-text? What is an image description?
Elyana: Essentially, alt text is a tag someone can add to an image that will make it accessible. I hesitate to call it a caption, because I feel like the trend nowadays is to use captions to comment on a photo rather than describe it. So this is where an image description comes into play. An image description, which is basically what it sounds like: text that describes an image for blind and visually-impaired people, is placed in the alt text field of an image in the HTML code of a website to tell a screen reader to read the description aloud. Otherwise, a screen reader would just read the metadata (i.e. time stamp/file name) of a photo, or simply read it as “image,” neither of which gives us access to said photo.
5) What makes a good image description?
If I’m being honest, image descriptions are so under-used that I get excited when I see any described photo; however, there are certain elements that make a description more effective than others. Some descriptions I have seen are as brief and to the point as “A girl collecting leaves in a wagon,” providing enough of an overview that I can synthesize it with whatever post it is attached to. Some can be longer, such as “A young blonde girl in brightly colored clothing collecting autumn leaves in her shiny red wagon”, which gives me a better understanding of the perspective or mood of the photo. So for me, a good description does not depend upon length as much as it does on helping me understand the aim of the image.
6) Some people may be hesitant to use certain things in descriptions, such as color. Should people worry about those things? Is there anything you personally don’t want to be in a description?
I can’t speak for everyone, but I don’t want people to feel hesitant or worried about using language that talks about visual things around me — not just in image descriptions but in everyday conversation. For me, color is just another tool I have in my vocabulary of descriptors. So I guess the short answer is: I can’t think of anything I don’t want in a description because anything that can go in a description is just providing me with a deeper understanding of the image.
7) What are some other ways people can make the internet more accessible for visually-impaired and Blind people?
I think one of the things people might not realize is that not all images that are just blocks of text on a colored background are not necessarily accessible to us. There are apps that strip text from pictures, and Facebook has added a layer of accessibility to help parse some memes, but most of them are just an image that screen readers can’t read. One of things that would help is adding a description to those types of images. It can be as simple as typing the text in the body of the post or, in the case of Facebook, pinning a comment to the post in question.
Another thing that is helpful is to capitalize the first letter of every word in a hashtag because screen readers will read each word separately instead of trying to string together all the letters into a mush of phonemes. For example: when my screen reader sees: #allforoneandoneforall” it tries to put all of the vowels together, resulting in me hearing: “alforowndeenodanaforal.” But when the hashtag is written like this: “#AllForOneAndOneForAll,” my screen reader knows to separate out the words, resulting in me hearing “all for one and one for all” as intended.
Final comments from Prismatic:
The last thing I’d like to say is that I appreciate all of Sara’s work to make her content more screen-reader-friendly. I can’t speak for other access needs, or any other blind person, but I am very grateful for creators who go out of their way to ask their audience what they need to be able to participate in their content.
Finally, thank you all for reading this post! I know that it can be a hard thing to remember sometimes, or maybe a hard thing to go back and fix, but really, I just ask that you try to use some of these tips moving forward. I am open for questions or discussion and am happy to provide feedback on your content if you want. I can also provide funny screen reader fails, because they can be pretty awesome!
Elyana Ren is a proud Hufflepuff and unquenchable bookworm. She grew up in the middle of the Pacific, but found herself after moving to the Pacific Northwest. Her works feature the authentic experience of being disabled, neurodivergent, and queer. When she isn’t writing, she uses the creative arts to empower others to trust and love their own voice. Elyana can be found on Twitter @aprismuncovered and on www.aprismuncovered.wordpress.com. If she isn’t there, she is probably in the company of a few good books, her guide dog, and her collection of plushies. Actually, always check there first.
Below are some visual guides created to help sighted people turn on and use image description options.
How To Add Image Descriptions on WordPress
EDIT: YOU CAN ADD ALT TEXT TO FEATURED IMAGES! Go to EDIT–>Featured Image (on the righthand side of the screen)–> After you assign a featured image, hover over the pencil icon to edit–> Add in description in Alt Text box!
How To Add Image Descriptions on Twitter via Computer or Phone
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 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. *paces nervously*
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, [they have] 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.”
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.
So I’ll admit, I haven’t had a ton of experience in this yet because I haven’t told many people about my diagnosis (and therefore haven’t gotten bad responses!). Never mind. That ship has sailed.
But I know what I fear people will say. I’d love it if everyone could take a quick look at these things and try to avoid them. But I also don’t want people feeling like they can’t talk to me and if they make a mistake, it’s game over! I understand that you might feel put on the spot. I understand that you might mean well with a comment. It’s ok to make a mistake and say something wrong as long as you’re open to learning why it’s hurtful and changing what you say.
I’m not going to go into much about why I don’t want people saying these things to me (or any other Autistic person) because it’s already been done before!! These blogs, articles, and videos are done by Autistic people who have gone through this, so I want to feature their experiences and advice.
Here’s some other Autistic peoples’ lists and explanations:
Amythest Schaber- Ask an Autistic #12: What Shouldn’t I Say to Autistic People? video
No need to read and watch all of these links above (unless you want to, in which case ALL THE BROWNIE POINTS!), but at least checking out some of these resources would mean a lot to any Autistic person you interact with.