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

 

Podcast Interview: Autism Personal Coach

I recently appeared on the podcast “Autism Stories” by Autism Personal Coach (@AutismPersonalCoach social media) to answer question about meltdowns and shutdowns, pillars, identity and community, masking, diagnosis, blogging, and more!

Scroll down to listen to the episode or find the transcript!

Autism Personal Coach “celebrates Neurodiversity by empowering adults and teens to be the best versions of their authentic selves” in a world not often built with us Autistic people in mind. They connect their audience with people and tools to grow, learn, and thrive.

Episode description from Autism Stories:

“Figuring out who we are and what we want is a lifelong quest. On this episode of Autism Stories we talk with Sara Earhart about how being diagnosed with Autism Spectrum Disorder led her to start a blog, Seeking Sara, and helped to give her a much better understanding of who she is. Autism Stories connects you with amazing people who are helping Autistic teens and adults become more independent and successful.”

A picture of a blue ocean with blue sky with sandbanks on either side. Black text reads

To listen to the podcast: click here.

To view a PDF transcript of the podcast: click here.

Check out the blog posts mentioned in the podcast:

Seeking Sara

2: Meltdowns & Pillars

Video: Meltdowns & Shutdowns

15: Diagnosis & Coming Out

21: Coming Out (Again): Part 2, The Sequel

Anniversary Interview 1: New Friends

Anniversary Interview 2: High School Friend

Anniversary Interview 3: My Husband

Anniversary Interview 4: My Parents

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

 

Have questions or thoughts about the episode? Feel free to comment below or on my social media!

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]