Posts

29: When You Don’t Believe I’m Autistic

Welp, it finally happened. [Beware (or enjoy?): snarky post ahead!]

Over the last few years, I’ve been coming out to family, friends, coworkers, etc. in an effort to be more authentically me, mask less, feel comfortable in my skin, and help others better understand my boundaries and needs.

I have been very, very ridiculously lucky to have mostly positive reactions when I tell people I’m Autistic. At the very least, reactions have been surprised, but affirming. But I brace for the reaction of each new person I tell because I know that people routinely react ignorantly to Autistics coming out.

And it finally happened. I told someone that I wasn’t able to take on more of a workload because I’m Autistic and am feeling very overwhelmed. And her response?

Well—laughably—she first completely and utterly ignored me and continued on with the monologue she was currently wholeheartedly invested in. Then about 30 full seconds later she paused and said:

“Wait. You’re on THE SPECTRUM?!? Yeah, okay… we’ll go with that.”

She may as well have rolled her eyes given the tone she used.

She then plowed ahead with her monologue before pausing again and saying:

“Really? You’re on the spectrum? Weird, I can always tell when people are. I work with kids who… never mind.”

So, maybe not the most ideal reaction. (Yes, this is sarcasm. I can do sarcasm.)

Honestly, what I hated most about the situation was my reaction and the feeling of helplessness. I wish I had been able to directly call her out on it, but that’s something that takes time to learn to navigate in real time. I’m the type of person who needs time to really process a situation and react later. The type of person that takes a few weeks of simmering and thinking about a situation and then write a snark-filled post after fully processing.

And that’s okay.

What’s not okay is how this person reacted to me.

So let’s unpack her reaction together, shall we? Class is in session! (Still feeling snarky…)

A photo of a black woman with glasses in professional attire, paper in hand, teaching while writing with a marker.
Learning time! Photo by rawpixel.com on Pexels.com

1) “I can always tell when people are Autistic.”

Yeah… No, you can’t. I mean, sure, you probably can some of the time. But I’m sitting here right in front of you. I’m Autistic. And you didn’t know. Ergo… no. You cannot always tell. Autistics are all around you; you just don’t realize. So yeah. There’s my “highly logical brain” for you. Sending you common sense. For free. You’re welcome.

Okay, on to the next one!

2) “I work with kids on the spectrum./My brother’s best friend’s cousin’s niece has autism.”

Ok. Well, first of all… I feel bad for those kids. (Is that mean? That sounds mean.) Honestly, anyone that ignorant needs to be further educated before working with Autistic people.

Literally every person is different. Didn’t know I had to say that, but apparently I do. Why would you expect me to be like another Autistic person you know? I don’t shout “You’re neurotypical? But you’re nothing like my friend Sally!?” into your face while maintaining a disgusting amount of gross eye contact. Because it’s silly. Because it doesn’t make sense. Because it’s absurd.

Bottom line–humans are all complex and highly different beings. No two of us are exactly alike. Why on earth would you expect two Autistics to be exactly alike? As the popular phrase goes, “If you’ve met one Autistic person… you’ve met one Autistic person.”

3) “Yeah, ok. We’ll go with that” (insert nasty, sarcastic tone and/or eye roll for bonus jerk points)

Ohhhhhh boy.

So, first of all, you’re heavily implying I’m a liar. You’re implying that my psychologists and therapists are incompetent or misdiagnosed me. Or that I somehow tricked two mental health professionals doing independent assessments of me.

But more than that, you are denying my neurology. You are denying the entire structure of my brain, the way I think, and the awesome things that come along with that. You’re also denying the terrible things that come along with it. You are denying my experience.

You are being ableist, denying my struggles of past and present, denying my identity, being condescending and patronizing, and just generally being an unkind human being all in one go. It’s not a good look…

Bonus “Avoid alienating or pissing off an Autistic” Guide

4) “You hide it so well!/I never would have guessed!”

This. is. not. a. compliment.

I mean, I guess I kind of slightly sort of maybe a little get where people are trying to come from with this? Finding out that the person in front of you is a literal coping and masking wizard who is 1000% of the time exhausted is a lot. It is a feat. But it’s also messed up.

Think about it this way. As a kid, I knew very quickly in school that I was different. I didn’t have a name for it, but I knew. I was bullied relentlessly and I didn’t understand why. I even had a teacher who routinely bullied me.

It was so bad that I started to try to MacGyver together social camouflage to avoid sticking out. (Read 1: Operating Manual for a bit more on that.). My masking, ability to “pass” as neurotypical, and generally inflict extreme harm on my introverted self in order to avoid bullying and aggression is not only an exhausting production that I just don’t know how to turn off, it is the result of years of agony and bullying. Craving friendship and acceptance so much that I mimicked peers I admired. Subconsciously suppressing my neurology, personality, and desires to get by and survive.

After all, that’s such a huge part of why I started this blog—to explore who I authentically am at my core. Because I have had to put so much of who I am away in a little box on a shelf in the back of my mind. And I’m just starting to unpack that box now.

5) “You’re so high functioning!”

There are a few phrases that are bound to make most Autistic people angry, and this is one of them. For one thing, functioning labels are just completely skewed and narrow. Functioning labels hurt all Autistics. Period. (I’m not going to go too far into this, but will insert a link once I find a good one.)

You don’t see the emotional, mental, and physical fallout from my exposure to things like overstimulation, sensory overload, long periods of social activities, or a scary experience. You don’t see my meltdowns or shutdowns (usually) because I have learned to plan out my energy and ability to cope for any given situation or day. This is closely tied to Number 4. Performing “high functioning” comes at a high cost and is just not accurate.

6) “I’m so sorry.”

Don’t be. I love me. I love my neurology (most days). The issues I deal with are related to society:  ignorance, exclusion, assumption, aggression, bullying, inaccessibility, sensory assault, ableism, etc.

7) “Oh, like Sheldon from Big Bang Theory/Rain Man/(Straight white cis man or boy)?”

No.

A photo showing two people sitting at a table, having a discussion. There is paper and pen in front of them, and one person is actively listening to the other.
Listening time! Photo by mentatdgt on Pexels.com

How you should react to someone divulging information to you:

You may find yourself saying, “Okay, Sara. I think I know how to lessen my chances of pissing off an Autistic. So what do I do and say?” While I can only speak from my personal preferences and wishes, these are some things that I would personally love to hear when I tell people:

–Thank you for telling me.

–Thank you for trusting me with this information.

–Cool. My partner is too. (Notice how different this is from the comparison above in Number 2)

–I don’t know much about that. Are there any resources you recommend to learn more?

–I have some questions. Is it okay for me to ask you some?

–How can I better accommodate you?

–What are your needs? How can I help?

28: Chronic Illness: Am I “Broken”?

Chronic illness is something that I talk about a lot in therapy. With diagnoses of fibromyalgia, chronic fatigue, PCOS, Hashimoto’s Disease, a narcolepsy-like sleep disorder, and more, it’s not hard to see why.

From the age of about 12 I’ve been extremely frustrated with my body. And for many years now, I have loudly and vocally proclaimed my body to be “broken,” daring anyone to have the gall to disagree with me.

In one therapy session, my therapist finally did. She asked me why I use the word “broken.” Game on! Well, you asked for it, I thought as my thoroughly thought out list of angsty anecdotes jumped straight to my tongue.

I launched into the daily frustration I feel with a myriad of symptoms that fluctuate unpredictably, the pain I feel 24/7, fatigue that sometimes leaves me bedridden, and all the other fun-filled things that come along with chronic illness. I talked about the things I miss out on, the things I may never be able to do, the toll it takes on my relationships, and the mental health burdens I have as a result.

As I described it, I all but dared her to contradict me… and she did. “Over the next few weeks, I want you to think about the idea of your body being compromised rather than broken.” She asked me to come back next session with my thoughts on the process and left me a lot of freedom in how I approached the task.

I must have looked at her like I do when people suggest that yoga can singlehandedly cure all of my chronic health issues, but I trust her, so I agreed to at least try. I decided to go about my usual routine and wait for frustration with my body to inevitably surface in my mind.

Over the next few weeks I challenged myself to reframe my negative thoughts about my body being broken to my body being “compromised.” To be perfectly honest, I didn’t really expect much out of the exercise, but I was surprised to have a powerful epiphany. The shift from “My body is broken” to “My body is compromised” is incredible and not one that I had anticipated.

“Broken” says that my body is to blame. “Compromised” acknowledges that my body is fighting along with me.

My body is functioning. It might not function in the way that I want. But I am alive. My body often doesn’t have the energy it needs to do what I want it to… but every day it does what it can for me, even if that’s sleep all day. Every second of every day it is keeping me alive, running bodily systems I know little about because I hated biology class. (oops) It endured 18 years of disordered eating and still kept going.

My body is doing its best.

The longer I practiced correcting my mental self-talk, the more I realized how ableist “broken” is and it made me want to tackle and reshape my thinking even more.

I started shifting my frustrations toward the illnesses themselves, and began to think of my body as a vessel that is just trying its best to continue despite daily challenges. The obstacles I face on a daily basis…are things my body is also enduring. Despite the false pain signals it has to process 24/7, despite the fatigue it battles through with me, despite the probably-ever-present warning alarms it must get tired of hearing all day… it functions as best as it can.

It’s amazing how such a subtle difference can make me feel less trapped, more hopeful, and more at peace. Instead of feeling bound to a broken machine, I feel more like I am going into battle with an old, tired, but badass friend.

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.

Autism Speaks…

Ok, so…I’ve been debating how/if/when to address this for a full year now.

After all, one of the main reason I started this blog back in April 2018 was to respond to the disheartening wave of negative posts and videos I saw all across social media that month when no one knew I was Autistic. I’ve put it off this whole time because conflict makes me ridiculously anxious. But as April approaches, I feel the need to step up and speak out. It’s time to rip off the bandaid, just like I did last April when I came out as Autistic through this blog.

Please bear with me. I know for some of you this will be a very uncomfortable read. But I urge you to please listen to Autistics!

To put it bluntly: Autism Speaks does not speak for me. I am not a puzzle piece, and I do not “light it up blue.” I do not support eugenics and I reject the notion that Autistics need to be “fixed” or “cured.” (I support assistance, accommodation, and adaptation!)

Phew, ok. I said it.

Now… to address why. (Eek!)

So many others have already spoke about this, so I will use their resources rather than try to re-explain my reasoning. I urge you to check them out with an open mind and consider donating to and supporting other, Autistic-led organizations.

This video by Amythest Schaber (Ask an Autistic on YouTube and Neurowonderful on tumblr) from 2014 is a good place to start. The video raises fantastic points and is worth a watch, though some of the data shared is outdated. (More up-to-date info below and it’s not pretty.)

Here is an image from ASAN (Autistic Self Advocacy Network), detailing how Autism Speaks uses their funds. Note that less that ONE POINT SIX PERCENT of funds is now devoted to family services…

A PDF image showing the breakdown of budget, showing Family Services funds to be less than 2%.

If you would like to hear more Autistic voices communicate their discomfort with Autism Speaks, feel free to check out this list of posts, A Roundup of Posts Against Autism Speaks.

***If you are still on the edge of whether or not to support Autism Speaks, please watch this video: I Am Autism. *** Ask yourself how Autistics feel watching this. (Hint: NOT GOOD.)

(Autistics… I recommend you do not watch it. It is horrific and it honestly makes me depressed and anxious. Please take care of yourself and stop or don’t watch.)

Funny how the only voices presented are “Autism’s” and parents. No Autistic people… hmm… it’s almost like they don’t value Autistic people’s thoughts and feelings…


Phew. Okay. I did it. In time for April 1st. Done.

If you—like me before my research into and subsequent diagnosis of ASD—currently or used to support Autism Speaks, please don’t hold onto guilt.

Instead, please consider arming yourself with facts, research Autism Speaks and alternative organizations, and pledge not to support organizations who speak about us rather than including us and amplifying our voices. (As ASAN says: “Nothing about us without us!”)

Please check out:

Autistic Women and Nonbinary Network

ASAN (Autistic Self Advocacy Network)

Instead of “Light it up blue”, check out:

-Red Instead, #RedInstead

-Go Gold for Autism, #LightItUpGold, #GoingForGold

-Tone it down taupe #ToneItDownTaupe

Consider celebrating Autism Acceptance month!: https://www.autismacceptancemonth.com/about/

And of course, another way to support us is by following and listening to Autistic people.

You can find us on most platforms with the #ActuallyAutistic hashtag. If you have questions for us, you can use #AskingAutistics.

 


[Featured image credit: Photo by Bich Tran on Pexels]

27: Eating Disorder Treatment

I’ve now been in treatment for about a month. My first steps out the gate might be best described more as stumbles and falls, but every scrape I earn on the way down is a badge of honor that I hang proudly in my mental trophy room.

Why? Because each time I slip and fall, I learn something new and often profound about myself. And each time I get back up, I reenforce the fact that I can do this.

I have an eating disorder. And I’m gonna kick its butt!


[Content Warning: eating disorders, weight, food, restriction, bingeing, treatment]

It’s taken a lot (and I mean A LOT) of work to take my first steps in treatment. As I wrote in my first post about my eating disorder, I spent over a year in therapy after diagnosis of disordered eating before I finally felt ready to start treatment.

“I feel like I’m starting out across a tightrope, and I look down and there’s no net that I can see,”  I stated bluntly to my therapist.

“Sometimes I’m scared and I want to crouch down, grab the rope, and head back to safety. But everyone around me—friends in treatment and recovery, family, my husband, books I’m reading, my therapist—is assuring me that I am safe and there actually is a safety net below me. I just can’t see it yet. I just have to trust and keep going.”

A meme with a close-up of a pair of feet and legs of a person balanced on a tightrope. Text reads, "Eating disorder treatment feels like I'm starting out across a tightrope and there's no net that I can see. Sometimes I'm scared and want to head back to safety. Everyone is assuring me that I am safe and there actually is a net below me—I just can't see it yet. I just have to trust and keep going." The words keep going are bigger font.

And here’s the thing: no matter how many rational people you have in your court; no matter how logically you look at your eating at times, an eating disorder will try to whisper (sometimes shout) in your ear that those around you are wrong—that you are wrong. Learning to identify that voice takes a lot of work. It takes even more energy and trust to at least ignore that voice, if not fully defy it.

Some days I can laugh in its face and retort, “You are losing and you know it. That’s why you’re so loud. Shout away!” Other days I cower and bow to the voice, agreeing with it for a moment if only to gain some temporary peace.

And it’s strange… treatment is hard. It can be scary. It’s utterly exhausting. Yet so far, treatment has been far, far less scary than my enormous dread of seeking help was.

I spent so long dreading and fighting the thought of treatment, but a huge part of me feels relief at tackling something that I’ve struggled with for eighteen years. While it’s scary to admit I have an eating disorder, it’s also incredibly liberating. As I do the hard work of therapy, it’s often exhausting and sometimes overwhelming, but it also comes with an all-consuming relief that I can’t quite describe.

Initial Steps of My Treatment

1) Six Meals

I started a six meal a day routine, eating three small meals labeled merely as Meal 1, Meal 2, and Meal 3, and three small snacks a day. This is fairly common in treatment. One of the benefits can be reawakening hunger cues that a body has stopped sending for people who have restricted.

I went into the routine thinking it would be very easy, but also feeling like that was a lot of food to eat. (Interesting how an eating disorder will whisper conflicting information in your ear. Once you start to catch on to its little inconsistencies, it starts to lose its grip on you ever so slightly.)

Through this task, I realized that anorexia has played much more of a role in my life than I had realized, and that my bingeing was often a symptom of both conscious and subconscious restricting.

This was a huge revelation for me because: A) I had always thought of it in reverse, that my bingeing lead to restricting out of shame and B) I had the false assumption that someone has to be underweight to be anorexic. (That is NOT the case at all. Anyone of any size or shape can be diagnosed with anorexia.)

I printed out a chart when I realized how difficult it was to remember to eat and how hard it was to hold myself accountable for it. I worked out the math: I needed to eat something every 2-3 hours or so. The only problem? Seeing what I was eating on paper made me fixate too much on WHAT I was eating. But my fear—that I needed to change everything about my eating habits all at once—was unfounded.

My therapist reassured me that we were breaking things into manageable steps. “Right now, just focus on when you eat, not what. Addressing nutrition comes later!” I was so relieved because she was right—focusing on what I was eating in addition to starting this new routine that challenged 18 years of restricting and bingeing was too much. It was setting me up to crash and burn.

2) Talking to my doctor

Another victory came at a follow-up appointment with my primary care physician. This was not strictly part of my therapy, but I made it part of it because I trust my doctor.

Toward the end of my appointment, I had worked up my courage. “There is one more thing. Something I think you should be aware of as my GP.” I took a huge breath and continued.

“I’m in treatment for an eating disorder and I’ve begun a six small meals a day plan in order to return my hunger cues and manage my restricting and bingeing. So far it’s helped a lot to identify that I wasn’t eating as much as I thought I was which was leading to binge eating. So far it’s helped a lot with dizziness and hypoglycemia.”

I paused and finally looked at him.

“That’s great! Most people should be eating 4 to 5 small meals a day rather than the 3 we do. And if you ever want to try medication, there are some that can help with binge eating.”

I could almost hear my eating disorder groan at this response (it had hoped he would shoot me down and I’d have an excuse to stop treatment), but ultimately I was relieved.

“Thank you! I think treatment is going well so far, so I’ll wait on medication, but it’s good to know there are options. Also…” I paused again, looking down at the notes I had written for the appointment, “I… would like to stop being weighed. It’s very triggering for me; It makes me struggle with restricting more. And it’s hard to avoid seeing it on my charts.”

I held my breath the beat it took him to answer.

“Absolutely. No need to take your weight.”

Phew! Another ally in my court.

3) Challenging the voice of my eating disorder

I have made quite a lot of headway in this regard, but am finding it the most difficult part of treatment. For so long, there’s been this negative narrative in my head regarding food, weight, perfectionism, and control. Identifying that voice was an overwhelming experience as I wrote down all the terrible things that voice says to me.

The next step after learning to separate the eating disorder “voice” from my own has been a little harder. I’m now starting to “reply” to it with snark like “Gee, what a terrible suggestion. Thanks, but no thanks!”

And as a close friend of mine pointed out:  the more progress I make, the more my eating disorder is going to fight to survive. It knows it’s losing, and it will do anything to survive.

But joke’s on it—I’m stronger. And certainly sassier!

4) Journalling and continuing to read

I write notes in my journal about what my goals from therapy are and reminders of things to do and not do. That’s been essential to keeping on track and reminding myself it’s okay when I slip up. I also reflect on things I’ve learned in the books I am reading as part of treatment.

Journalling has also helped me to connect some dots on how my eating disorder controls a vast variety of things in my life. I’ve been astounded, for example, to realize how much my eating is tied to my perfectionism and anxiety, and in some ways, my OCD tendencies.

For example, my need to follow difficult tasks through until the bitter end no matter if I want to or not is slowly, ever so slowly budging. I recently had a small but mighty victory of “cheating” while reading one of my books and skipping over a section that was triggering to me. In the past, I would have slogged through that section to be “self-disciplined” (strange as that sounds) even when my mind and body were signaling “This is not what we need right now!”

Journalling also helped me to realize that binge-eating had been a way to stress-stim for me, and that without it I was much more anxious. It showed me that I needed to start stimming as self-care: coloring, squishing clay and silly putty, singing, flapping my hands, holding fluffy stuffed animals, etc.

I see these victories as tied to my treatment in a very real way, and I wouldn’t have noticed them without journalling. The journal also gives me a place to record moments I’d like to share in therapy, and a place to look back on to see how far I’ve already come.

I’ve got a long road ahead, but for now, I am so happy to look back and see how far I’ve already come.

A meme of a forest path with a blue square of text over it. Text reads, "I have an eating disorder. I began subconsciously using food to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life. As I start down my long path to recovery, I am reaching out to others to say "You are not alone." I have an eating disorder...and I'm going to kick its butt."
[Featured image description: A close-up of a pair of feet and legs of a person balanced on a tightrope. Text reads, “Eating Disorder Treatment: My First Steps. Seeking Sara.”]

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”]