30: Seeking Sara, Finding Alex

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.

gray background with a blue name tag that reads "Hello my name is Alex

Below is a Q&A to briefly answer some anticipated questions:

Name: Alex (gender-ambiguous)
Gender Identity: Non-binary / Genderqueer
Preferred Pronouns: they/them, but she/her is fine for now
Please don’t use: woman, lady, miss, missy, girl, etc. whenever possible.

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

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.

6) Where can I find more info?

https://www.thetrevorproject.org/…/…/Coming-Out-Handbook.pdf
https://www.thetrevorproject.org/trv…/trans-gender-identity/
https://transequality.org/…/understanding-non-binary-people…
https://lgbt.foundation/who-we-help/trans-people/non-binary
https://www.teenvogue.com/story/what-is-non-binary-gender

Many thanks for sticking around with me through this transition.

Autistically,

Alex

 

One Year Reflections

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.

A grey, pealing wall with colorful text that says
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.

Thank you.

Autistic Collaboration Video!

“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:

Arianne Garcia– Stairway to STEM (@StairwaytoSTEM)
Yenn Purkis- Yenn Purkis’ Autism Books and Other Things.
Kylie Andrade- Life on the Spectrum
Shadia Hancock – Autism Actually
Kayla Smith – @beingkaylasmith
Adam Walton- The Proud Aspergian
Peri Savidge- Not Raingirl
Cynthia Zuber- The Neurodiverse Woman
Olivia- @chichirinuriko20 (YouTube)

#ActuallyAutistic #AutismAcceptance #AutismAcceptanceMonth

Transcript for “Who Are Autistic Adults?”, a collaboration by Edge of Playground (Mikhaela) and Seeking Sara: An Autistic’s Journey.

(guitar music)

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

End of transcript.

26: Sick While Autistic

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.

    Take care of you because you are so so important.

    [Featured image description: A green plant with thin, long leaves with white and pink spots that look like chicken pox. Text reads “Being Sick as An Autistic Person”]

Anniversary Interview 4: My Parents

Anniversary Interviews

Welcome to the last anniversary interview where I interview loved ones about my Autism diagnosis! To read more about why I’m doing the interviews, check out the first interview (linked below).

The interviews will be with: (link opens in new tab)

1) New friends: Anniversary Interview 1: New Friends

2) A high school friend: Anniversary Interview 2: High School Friend

3) My husband: Anniversary Interview 3: My Husband

4) My parents

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!


Anniversary Interview: Mom and Dad

1) What were some of your initial thoughts when I came to you about the possibility that I might be Autistic?

Dad: Well, my first reaction to the notion was “Huh?”  My only personal experience was with children, and most of them were very “low-functioning” boys with “classic” (that is to say, stereotypical) behaviors.  The “highest functioning” high school boys I knew were still largely non-verbal, avoided eye contact, acted out if they didn’t get what they wanted. Not knowing how autism is often manifest in women, I’m afraid I was kind of dismissive because I didn’t see the stereotypical behaviors I had (wrongly) come to associate with autism.

Mom: My first reaction was, “What?”  I mean, Dad’s describing experiences with my students and children from church.  I know a lot about autism, but in retrospect, it’s mainly with autism that creates very diverse and multiple learning needs, including large communication challenges.  Autism is a spectrum, but I had predominantly studied the more challenging end of the spectrum.

2) Is there anything you would have done differently as a parent had you known?

Dad: This is a difficult question to answer.  I admire who you are as a young woman, your many insights and talents, ability to articulate your thoughts, your witty banter.  So, is this who you would be today if we had raised you differently? I think we went to bat for you at school when we knew about issues, but you kept your experiences of middle-school bullying so private that we didn’t know until you were in college.

Mom and Dad: Maybe we would have found a different way for your piano lessons so they would have engaged you more appropriately/deeply, or would have understood that horseback riding was more like therapeutic riding to you and not just considered it a hobby.

Mom: You always had such unique needs anyway, due to your dietary difficulties, that I think we pretty much dealt with whatever presented itself.  There may have been things that went on internally, but you rarely shared inklings of those things.

3) Looking back at me in my younger years, what kinds of things make more sense to you now?

Dad: You may have a different perspective on this than we do, but we tried to raise our children to lead their own best lives, to speak their minds, to develop their interests and talents as they emerged.  We took you to soccer as long as you were interested, not because we dreamed of you being a pro-soccer player.

We didn’t have plans for you to be a straight-A student, or grow up to be a doctor, or a lawyer, or a pastor, or a teacher.  So we always tried to engage the “you” that was presenting at the time, not some artificial expectation of a “you” we had in our own imaginations. For example, you were frequently around hundreds of people (at church, etc.) and we let you engage — or not — as you wished.

Mom: We’ve always raised our kids to be their individual selves, so any journey of self-discovery is great!

Mom and Dad: Since we were taking our cues from you, we’re not entirely sure that knowing about your diagnosis sheds any more light on things.  At least, we don’t have any memories of thinking, “Why is she doing that?!” that knowing about autism helps us understand in hindsight.

Dad: Maybe I wouldn’t have insisted so much on giving goodbye hugs and kisses to grandparents if I’d known how uncomfortable they made you.

Mom: I wouldn’t have insisted on those anyway.  I’m an introvert, so I understand personal space and value quiet or less chaotic environments.

4) What kind of positive changes have you seen in me in the last year? How have I grown or changed?

Dad: The more you learn about yourself (not only regarding autism but also ADD) the more comfortable you appear to be in your own skin, if I can put it that way.  You understand (and own) that your needs are valid and are perhaps your own best advocate for them, such as wearing noise cancelling headphones in noisy public settings regardless of what others might think.  That’s really great!

A meme with a cityscape background and a white diamond in the middle. The text reads "The world is such a loud place and it seldom stops talking. Wearing noise-cancelling headphones allows me to filter out the assault of noise and focus on your voice. SeekingSara174.wordpress.com." There is a graphic of blue headphones in the middle with a tiny heart between the earphones.

Mom: It seems like you have fewer fibro[myalgia flare] days, and this may be because of paying attention to your sensory needs and knowing to take breaks when you need to.

Dad: Yeah.  You continue to push yourself, but now understand the importance of respecting your internal pacing rather than trying to please some external measure of success.

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?

Mom and Dad: I think we’re both really proud of your blog.  It’s quite an ambitious undertaking, and it’s been great to see not only your personal growth in self-awareness but also the number of others who are gaining insights into their (or their children’s) lives.

Dad:  I’m probably biased, but many blogs seem to be rather shallow (“This is what I’m wearing/eating/doing today…”) but Seeking Sara has real depth to it.

Mom: We’re wondering if there are things you think we could have done differently for you in your childhood if we had known.

Dad: I would like to read more about how music affects you, and if there are ways you use music to accomplish certain tasks that you would find otherwise difficult.  For example, if you get anxious before a doctor’s visit, are there certain types of music you listen to that help you center and stay calm? If you become fearful on a long car ride, does music help you address the fear (not just help pass the time)?  I’m also curious about the observed connection between autism and the microbiome/GI issues, but I don’t know enough about this to frame any specific questions.

Mom: I’d also like to know more about how autism gets diagnosed outside of a school setting, because that’s all I’m familiar with.


A huge thanks to my parents for being so brave and open-minded when doing this interview. I love you guys!

A massive thanks to all the people who agreed to be in the spotlight. You guys rock!

And lastly, a big thanks to everyone who read the interviews!

[image description: A picture of blue flowers with a big white rectangle placed on top of it. Text on a blue box reads, “Interviewing My Parents About My Autistic Self.” The words “Parents” are written in blue while the rest is written in white.]

Anniversary Interview 2: High School Friend

Anniversary Interviews

Welcome to the second anniversary interview where I interview loved ones about my Autism diagnosis! To read more about why I’m doing the interviews, check out the first interview (linked below).

The interviews will be with:

1) New friends: Anniversary Interview 1: New Friends (link opens in new tab)

2) A high school friend

3) My husband: Anniversary Interview 3: My Husband

4) My parents: Anniversary Interview 4: My Parents

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 information by 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 husband! 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.]

How to Be an Accessibility Ally: Screen Readers

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 that  the 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.

The image in Elyana's example. A young blonde girl in brightly colored clothing collecting autumn leaves in her shiny red wagon.

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!


ABOUT ELYANA

Elyana and her yellow lab guide dog. Yana is laughing with joy as her dog turns to lick her face. Yana wears a green Hufflepuff sweater and a plaid hat.

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

A visual guide detailing how to add alt image text to images 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

For Twitter’s explanation (without image guide) including Android instructions: https://help.twitter.com/en/using-twitter/picture-descriptions

A visual guide detailing how to add alt image text to images on Twitter from a computer.

 

A visual guide detailing how to add alt image text to images on Twitter from a computer.

Anniversary Interview 1: New Friends

Anniversary Interviews

November 2018 marks one year since my “official” clinical diagnosis of Autism Spectrum Disorder. When brainstorming what I wanted to write about, I was finding it difficult to come up with anything meaningful or interesting. For the last 6 months of doing Seeking Sara, I’ve been doing 98% of the talking, and I thought it was time to turn to loved ones in my life for their thoughts and insights on my Autistic experience.

The interviews will be with:

1) New friends

2) A high school friend: Anniversary Interview 2: High School Friend

3) My husband: Anniversary Interview 3: My Husband

4) My parents: Anniversary Interview 4: My Parents

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!


New Friends: Ivana and Nicole

1) What were some of your initial thoughts when I told you I’m Autistic?

Ivana: I don’t think you told me directly. I think I read it on your blog. To be honest I didn’t think much of it. I know other people with autism and know about it. I know there is a huge range as far as traits go. I was very impressed by how open you are and that you are using your experiences to help out and reach out to other people. I also thought you were a great writer!

Nicole: Initially I was surprised and curious to know more about your diagnosis.  As someone who works with children, I’ve had some experience with children who are on the autism spectrum, but these interactions were typically with youth who are “low functioning” or fall on the more “severe end” of the spectrum. My Mom also has worked for several years as a classroom aide for elementary students with IEPs, very often those with “severe autism” included. You didn’t seem to meet my perception of what autism looked like, hence the surprise and curiosity! I don’t think it would have ever occurred to me that were an autistic person if you hadn’t told me.

2) How has your perception of me changed since I told you? What do you notice about me now?

Ivana: I did notice sometimes when we have been talking you might look away and focus on something else. I assumed that helped you when there might be too much stimulation in the environment. I also noticed how you sat at the end of the table at the [wedding] rehearsal dinner, because I know that’s something I do as well to cope with my anxiety. 😊

Nicole: I don’t think my perception changed all that much, but that is at least partially due to the fact that I didn’t know you for very long before I knew you were autistic. What I notice most may be your behavior in social interactions— your comfort level and engagement with others can vary and if you seem to be taking some alone time, I respect that. Reading your post about small talk and eye contact was really interesting to me and something I keep in mind if we may be socializing together.

3) Is there anything about me that made more sense to you after I told you?

Ivana: I think I got a better understanding why you and I connected so easily & quickly. I have social issues that I struggle with.

Nicole: As I mentioned before, since I didn’t know you very well before I knew you were autistic, I don’t think I had the opportunity to really notice any differences or reflect on behaviors.

4) What kind of positive changes have you seen in me in the last year? How have I grown or changed?

Ivana: I don’t think I’ve known you long enough to really answer this, but I know as we’ve gotten to know each other better you have opened up to me much more. Every time we see each other I feel like I know you more.

Nicole: You’ve become more confident in yourself! You have grown more comfortable in your communication with others and in sharing your personal stories and experiences, both in person and via the blog (of course).

5) What do you think of Seeking Sara? What kinds of things are still unclear to you? What would you like me to write about in the future?

Ivana: I think your blog is wonderful and I know I’ve learned things from reading it. I’m not sure if you’ve already written about this but I’d like to know more about how you started writing. Did you already have a blog before your diagnosis? What really makes you want to share your experiences? Were you hesitant about sharing in anyway?

Nicole: I think Seeking Sara is wonderful and applaud your bravery to share so much about yourself with others! You have really opened my eyes to the variety of experiences and struggles those with autism can have on a daily basis, and I’ve gained a better understanding of what it means to be an autistic adult especially. Your post about sensory issues with foods specifically really made me think about how such a basic task such as eating can be a challenge.

I truly appreciate that your writing makes me think about many everyday experiences that I take for granted, or don’t think about at all. I’d love to hear more advice for how I can be helpful and supportive to those with autism, as well as more about your personal experiences from day to day.


A huge, huge thank you to Ivana and Nicole for being so gracious and agreeing to do this interview. You’re both awesome!!

The next interview will be with one of my high school friends.

Thanks for reading!

[image description: A picture of red tulips with a big white rectangle placed on top of it. Text on a blue box reads, “Interviewing My New Friends About My Autistic Self.” The words “New Friends” are written in red while the rest is written in white.]

Exclusive Interview: Dr. James McGrath, Autistic author

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.

Buy Naming Adult Autism here on Amazon.
Find James on Twitter:@DrJamesMcGrath


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.

A selfie of James, a white man with blue eyes and a beard and mustache. His brown hair is windswept and he wears a blue T-shirt and black jacket. He looks pleased and relieved.
A selfie of James just after sending off his manuscript to the publisher. Victory!

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.

A nighttime picture of James' attic haven. The ceiling is slanted and there is a skylight. Stacks of books line one wall, a rack of CDs lines another. There is a bed with bright red bedsheets.
James’ “haven” and home pre-move, an attic flat filled with books and music.

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. 

The inside of a rustic cabin, facing the open door to the outside. A computer sits open to James' book open in a Word document.
James’ writing space in the cabin.

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 Verb with 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.

A screenshot of BBC Radio 3's poetry program "The Verb" episode where James appeared. It reads "Autism: poetry, language, and writing. James' name is circled with an arrow pointing to it.
A screenshot of BBC Radio 3’s poetry program “The Verb” episode “Autism: poetry, language, and writing” where James appeared. Find it here or click the picture. (Credit: BBC Radio 3)

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 can be 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.

A screenshot of questions 1-14 on the Autism Spectrum Quotient
Screenshot of “The Adult Autism Spectrum Quotient” (AQ) questionnaire (Credit: psychology-tools.com)

But what is less well-known is that in addition to 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)
A screenshot of some of the maths questions on the Quotient test such as "I am fascinated by numbers" or "I am fascinated by dates."
Some of the math-oriented questions on the Quotient test. (Credit: psychology-tools.com)

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).

Sheldon Cooper from The Big Band Theory standing with his back to the camera, doing highly complicated math at his whiteboard.
Sheldon from The Big Bang Theory standing at his whiteboard doing math. (Credit: CBS)

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.

The bright orange cover of "Gobbolino: The Witch's Cat" by Ursula Moray Williams. There is a scruffy black cat drawn on the cover, looking up at a cartoonish spider.
(Credit: Puffin Books)

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.

tom garden book
(Credit: Oxford University Press)

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 BonnevilleA novel I read recently that deals with autism and gender brilliantly is Ta-Ra, Alice: Odyssey on a Shrinking Raft by 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.

The bright, vividly red cover of "Odd Girl Out" by Laura James. The title is written in huge white capital letters. There are pictures of uniformly positioned mannequins in the background, with one single mannequin posed differently.
(Credit: Hatchette Book Group)

And, as discussed in Chapter 2 of the book, there’s Joanne Limburg’s The Autistic Alice. More recently, Laura James’s Odd Girl Out: An Autistic Woman in a Neurotypical World. A real highlight of the last few years for me was sharing a platform with Joanne and Laura at the Norfolk and Norwich Literature Festival.

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-bodied male.

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?

James, a white male with brown hair, dressed in colorful yellow, blue, red, and black graduation robes. He is wearing a black graduation hat.
James at graduation.

15: Diagnosis & Coming Out

If you haven’t already, please read my blog post “13: Women and Girls” to better understand this post!

Welp, here it is!

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 on the Spectrum, 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 on the Spectrum often present very differently than men. (See 13: Women and Girls 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. I was 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 Sara, 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 Sara. I am Autistic. I am me.”

 

[image description: An image of a delicate bright pink rose that’s covered in raindrops.]