Author: AutisticallyAlex

My Hysterectomy: Grief, Regret, & Joy

Grief, like so many emotions, is an experience that relentlessly evades my expectations no matter the circumstances. It doesn’t matter how many times I try to “practice” a future incident or attempt to troubleshoot how I’m feeling. Grief is stubborn. Grief is creative. Grief is necessary. But goddamn… grief is a bitch.

This summer, I lost so much. In rapid succession, my life began to shatter and splinter outward in sharp, crackling edges. Let’s just say– if I’d been given a bingo card with the events of my life in 2022, I would have bet my existence there wouldn’t be a single winning bingo on it. But here I am– holding a tattered bingo card that’s been stamped so many times the ink has begun to bleed. 

Grief’s gnawing, grating lament has been present for so many months now that I hardly feel it most days. But grief has found a new way to make me hear it again in the most unexpected way. This grief is like the ground after an earthquake, when the earth begins to liquify and water bubbles up through the cracks. This grief is unique, and feels decades old. And I suppose it is…

Grief, Regret, & Joy

In August 2022, after 20 long years, I was finally able to receive a total hysterectomy. I’m a trans nonbinary person with Polycystic Ovarian Syndrome (PCOS) and persistent gender dysphoria, and I have been fighting to receive this medical intervention for two thirds of my life. This victory should make me happy. It does make me happy. Indescribably happy.

But alongside this relief and joy is a dark swirling void in my chest that pulses sharply and shrieks to be heard. This void reminds me of things pushed into cages in the back of my mind.

It reminds me of 20 years of horrific and debilitating agony from large ovarian cysts that ruptured routinely throughout my life from ages 12 through 32. It reminds me of missed classes and days of work. Frantic trips to the ER. Fearful menstrual periods waiting frozen with terror for another bomb to go off inside of me. Invasive tests and stoney-faced unlistening doctors. 

“Alongside this relief and joy is a dark swirling void that pulses sharply and shrieks to be heard.“

This insistent grief paints an uncanny and unwelcomed image of a 12 year old kid blacking out while home alone and waking up to a still-present, gut-wrenching pain that sadly wasn’t just a bad dream.

And more than anything, the black swirling void in my chest stirs and coils into a viper that reminds me that often with grief… comes rage. The viper in my chest spits out echoing reminders of betrayals and failures to protect. Of the hippocratic hypocrisy– “do no harm”. The echoes summon the memories, accompanied by the haunting grief… the rage.

“This shouldn’t happen again. It’s rare. You don’t need to worry.”

An image of a 12 year old terrified to walk down the stairs, scared to somehow set off another bomb inside. 20 years of it happening… again. And again. And again.

“Take these and it’ll stop.”

A just-barely teen cycling through half a dozen hormonal birth control medications, quickly followed by a quick succession of anti-depressants, chronic pain, and intense suicidal ideation.

Lots of pills of all different shapes and sizes and colors

“You don’t know you don’t want kids. You’re not 30 yet. What if you change your mind?”

A child, teen, then young adult begging for help from doctors, insisting that no child– even if it were wanted– is worth this daily dread. This indescribable agony that makes life seem unlivable.

“It’s just part of being a woman.”

A too-young child learning to dissociate so far outside of their body that the pain the body feels is like a flickering candle in a distant galaxy.

Dark galaxy with a faint moon

“Only come to the Emergency room if you’re bleeding through an entire pad.”

A young adult gasping, “I’m fine. This is normal.” while inwardly praying to either black out or die. Anything to escape the all-consuming pain that makes their vision go white.

“I’d trade you if I could.”

A confusing rage and deep, unfathomable sorrow that pools around the viper swirling inside.

Grief, Regret, and Moving Forward

I’m still not sure what to do with the gritty heaviness of this grief. This grief is dripping with poisonous rage and there’s nowhere to place it. No single person to direct it toward, demand answers from. Yet holding it inside grows challenging. How do you coil your rage around a systemic cage? 

This rage is a part of my grief that I cannot lock away. Its molten heat merely melts the lock. I don’t know how to honor this anger. I don’t know how to look back at my past and tell my younger selves that they did everything right. They did nothing wrong. It wasn’t that they didn’t say the right words or do the right things. They tried so damn hard to be heard. They collected countless bruises and traumas, and they kept going anyway. They grew to be a warrior far stronger than many grown adults ever need to be, and far, far too young.

As reproductive rights continue to be challenged throughout the country, I grieve and I rage. Bodily autonomy is already denied despite documented “medical necessity.” Further barriers to medical care seem insurmountable in an already cruel and inhumane system which deliberately and callously silences minority voices.

And echoing in my mind is the question “Who defines ‘necessity’?” This question haunts me through my grief and my rage.

I look back and tell my 12 year old self…

“It was a necessity. It was a necessity for 20 years. It’s time to let yourself feel again. I am so damn proud of you, kiddo.”

Navigating Autistic Grief & Anger

Emotions are often a daunting endeavor for me. I struggle to identify how I am feeling, then struggle to emote the feeling outwardly in a way others interpret correctly. (Or more often, I painstakingly mask it.) I especially struggle to let myself feel and sit with my feelings—particularly grief and anger.

When I think about it, there are actually many reasons why I shy away from both grief and anger.

Intense bodily and sensory experience

These feelings are often accompanied by uncomfortable things like: nausea, dizziness, buzzing electric limbs, stuffy nose and wet face from crying, elevated heart rate, clenched jaw, tensed muscles, etc.

They feel incredibly all-consuming

Both set off a fight/flight/freeze/fawn response in the amygdala, and that sends my brain into a hyper-focus on the “problem” of my emotion, like it’s some sort of math equation I can logic myself out of if I crunch the number just right. (Yikes?!) And it feels like I will never not feel the all-consuming emotions again— like no other emotions exist or will ever exist.

They make me feel out of control

I don’t mean “out of control” like smashing dishes or slamming doors; I mean “not feeling safely in control of my feelings.” I’ve spent so long repressing and locking away “negative” emotions like anger and grief that feeling and expressing them feels so utterly unnatural to me.

But that leads to a vicious, self-damaging cycle. I automatically repress my anger and grief for a whole host of reasons:

  • Masking by default
  • To avoid bringing attention to myself
  • To avoid further conflict or uncertainty
  • To have some amount of control in something (imagined or not)
  • To give myself more time to process at my own pace (or… not process, apparently…)
  • Feeling like an inconvenience or burden for showing them
  • To spare other people’s feelings
  • To not appear selfish when others are also upset (pain comparison)
  • To be a caretaker or support, always to others and rarely for myself
  • Not wanting to have or feel them (avoidant behavior)
  • Thinking I am a terrible person for feeling them
  • Not realizing that I can feel more than one thing at once (and that they can —and often are— contradictory!)
  • Because I often don’t think I deserve the time and space to feel them
  • Thinking that it’s somehow “childish” to feel

“But Alex, what happens to those feelings then?” you may ask. (Let’s pretend you asked. I’m feeling a bit lonely today. How are you?) Well thanks for asking totally and completely unprompted, dear reader.

Until recently, my answer would have been “I just don’t feel them” with a nonchalant shrug and a misguided feeling of pride and strength. But the issue with stuffing all of the anger and grief into boxes and locking them away is that eventually… the box can’t hold it all anymore.

No matter how many locks I add; how many chains, ropes, and weights… anger and grief are not content to remain contained indefinitely. When I don’t allow myself the time and space to feel, these boxes are ultimately stored in my body. In my tensed jaw, tension headaches, scattered thoughts, tight muscles, fluttering stomach and heart. Anxiety, depression, panic, obsessive compulsive tendencies.

Only when I am pushed to the absolute breaking point do those boxes shatter and I feel everything. All of the build up from weeks, months… sometimes years. All at once. Such an irony that some of my only experiences really feeling both grief and anger (and the overwhelming nature of both) are massively amplified by the sheer volume of emotion built up and not yet processed.

Slowly, I am learning.

The lessons I am learning are slow to come. They are inherently unnatural to me, and my neural pathways fight with all they have against veering off course. It feels terrifying to my brain to stray from what “keeps me safe” (faulty defense mechanism). But faint pathways are beginning to glow ever-so-slightly alongside the glowing stubborn hardwired paths.

  • I cannot control my emotions. I may shove them into a box and tuck it away out of sight, but those feelings only fester and poison me from the inside out. “Out of sight”, it turns out, is actually not “out of mind.” The only thing accomplished is delaying and amplifying those feelings for a later date when the box explodes, often in the least opportune time.
  • Not feeling is not necessarily “strength.” Sure, it can be a protective tool and defense mechanism. It can get you through some horrific experiences and allow you to continue onward. Society tries to shame us into being silent and “strong.” But true strength—and true courage— is learning to take that box of scary “negative” emotions down and open it.
  • It’s ok to put feelings into a box short-term. I don’t need to feel all things all the time. I don’t have to be overwhelmed constantly. The difference is that the box needs to be taken back down routinely to look inside until it is familiar and routine.
  • Feelings are not rational. They are not flaws. They are not selfish. They are not negative. They cannot be logic-ed away, calculated out, or erased completely.
    • Anger is there to show us when boundaries have been crossed; when we value ourselves and our needs; when we need an alarm to alert us that we are feeling a mixture of many big, underlying emotions.
    • Grief is there because we care. We love. We lose. We mourn. We hurt. We love again. We hope. But we are not our feelings, and both grief and anger are completely acceptable to feel.
  • Sharing feelings with supports is not a burden. Checking in with friends and family about intense feelings is acceptable. Asking if someone has the space and spoons to help you hold that feeling is invaluable, and so many people want to be there to help you do so.
  • It’s okay to feel big things. Allowing myself to really feel these emotions is going to take time, and I can’t lie… I am still utterly terrified by it. It sets off all alarm bells. It sucks. But it’s also a massive relief. I have steps in place to start cracking those boxes open—just a smidge at a time— to vent the barest wisp of emotion out. I am holding space for myself to fully feel the weight of that box before placing it back on the shelf for another day.

And with practice, maybe I won’t need a box with so many chains.

32: Transitioning at 30: Injecting Testosterone and Self-Acceptance

I identify as non-binary trans masculine. For me, this means that I do not identify as the gender I was assigned at birth, and I experience a lot of dysphoria because my mind and heart do not match my body. In order to help treat this disconnect, I have been on testosterone hormone therapy for 4 months now. The journey to beginning this therapy has been a long time coming. 30 years, in fact.

In October, I wrote a guest piece for an LGBTQIA+ platform called The Buckeye Flame.

Here is a preview of it:

When scrolling through TikTok, you might think that all trans and non-binary people figure out their true identity as teenagers. As a 30-year-old non-binary trans masculine adult who started low-dose testosterone (T) therapy 2 months ago, I can assure you that that’s not the case. My journey to starting T has been decades in the making and has been nothing like I imagined.

But there was more than Jojo. My heroes were Disney’s Mulan, Sailor Uranus (AKA Haruka) from Sailor Moon, Alanna from Tamora Pierce’s “Song of the Lioness” series, and so many more. I didn’t realize it then, but I identified so strongly with those characters in part due to their gender exploration and identities. 

Fast forward a decade, and I am finally transitioning. I’ve come out to family, friends, and coworkers. I have legally changed my name and started using they/them pronouns exclusively. I started to phase out clothes from my wardrobe that make me uncomfortable and bought chest binders.

And eight weeks ago, I started testosterone therapy.

To check out the full piece, please click the link below. As always, thank you reading!

Autistically,

Alex

they/them

Transitioning at 30: Injecting Testosterone AND Self-Acceptance

13: The Autistics Left Behind

Autistics are left behind when stereotypical Autistic behaviors or traits are used as the sole criteria when evaluating and diagnosing Autistics. While this can be damaging and impactful to boys and men as well, women and non-binary folks have been left behind, misdiagnosed, and written off at an especially alarming rate. This leads to so many issues, many of which I know firsthand as a non-binary Autistic who was only just diagnosed a few years ago at age 27.

It was once thought (and still thought by many) that the number of Autistic boys far outnumber the number of Autistic girls. But with more and more Autistics like myself speaking out as advocates, people are starting to realize just how untrue and damaging this misinformation truly is. While trying to re-educate neurotypicals, some advocates focus on the differences in how girls present versus how boys present. Others look at “internalized” characteristics versus “externalized” characteristics and the differences in how traits manifest which can sometimes vary between genders. I’m not sure what the answer is myself; I only know my own experience.

These are a few of the things I myself have experienced as an AFAB (assigned female at birth) non-binary Autistic diagnosed in my late 20s:

  1. I learned early on to “mask” my Autistic traits, even though I didn’t realize they were generally not viewed as neurotypical things.  I was bullied relentlessly in primary school, sometimes even by teachers. I didn’t know why I was a target, but I knew I was and that trauma forced me to sit back and watch. I latched onto peers and mimicked, painfully masking my instincts and following their examples in an effort to conform and fly under the bullying radar. Even as I begin my 30s, taking off that mask has been an alarmingly difficult process. I still can really only let my mask completely down around my wife, when I am free to verbally stim or rock or flap my hands in joy, use echolalia, let out verbal and physical tics, etc. I can’t describe how freeing that is.
  2. Because of my “skill” at masking, I was more able to “pass” as neurotypical. The stress of doing this long-term leads to extreme stress, trauma, anxiety, and other mental health concerns. I myself have severe C-PTSD, social anxiety, a history of disordered eating, etc. I also live with fibromyaglia and chronic fatigue, and these become more severe when I have to mask for long periods of time. When you can’t understand why you are different and spend so much energy squashing yourself into a box, it takes a devastating mental and physical toll.
  3. Some special interests (which folks sadly tend to pathologize rather than celebrate) may be less obviously “unique” and may therefore go unnoticed. For example, knowing every fact possible about One Direction vs. knowing every fact possible about trains. My own intense interests include Japan, Japanese language, singing, writing, art, and fantasy/sci-fi books. These hobbies have lead me to my college majors and careers; I am fluent in Japanese and spent several years living in Japan. I now write and create art as a form of self-expression and advocacy.

There is so much more to this topic. One main goal of my blog is to hopefully reach people who are like me. Folks who have always been different, but haven’t known why. I want parents to understand more about their kids. I want professionals to challenge the stereotypes they hold and listen to Autistics.

My own diagnosis has been so beneficial, transformative, and life-changing for me. For me, the Ah HAH! moment was when I stumbled across Rudy Simone’s book Aspergirls: Empowering Females with Asperger Syndrome.

Below are the charts from Simone’s book that changed my life and started me on my search:

Aspergirls for blog.png

Used Simone Women and girls.png

Simone says of her charts:

“These lists are based on my research. While others may be coming to their own similar conclusions, I based these observations of Female AS on interviews with dozens of diagnosed women of all ages and educational backgrounds, from all over the world. These traits were threads that ran throughout their information and stories, tying us all together. As usual, I do not mean to say that all women with AS will possess all of these traits and I do not like putting us in boxes, but there was a need for an easy-to-read reference.”

While I identify as non-binary, anytime I would wonder if I could possibly be Autistic, I would pull up lists of traits and immediately shake my head, seeing the stereotypical and often male-oriented traits listed. It delayed my diagnosis by literal decades.

This chart was the first step toward self-discovery for me. From there, I found Amythest Schaber‘s Youtube channel, started jotting down realizations in a notebook…then one day, started a blog.

More and more, girls, women, non-binary people are coming forward on Youtube, in blogs and articles, and in person to talk about their experiences as Autistic individuals.

It’s about time the world listened.

Additional Info

On my blog, I recommend:

4 Things I Want People to Know About My Autistic Self

Autistic Collaboration Video!

15: Diagnosis & Coming Out

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

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

30: Seeking Sara, Finding Alex

Other Resources

If you want to hear firsthand from other Autistics, check out the podcast Autism Stories, hosted by my friend Doug at Autism Personal Coach. Here are two episodes I appeared in, but there are so many more:

On late diagnosis (Under Seeking Sara, before Autistically Alex launched):

On gender identity as an Autistic:

Please check out the Autistic Self Advocacy Network (ASAN): https://autisticadvocacy.org/

Also be sure to check out: Autistic Women & Non-binary Network (AWN): https://awnnetwork.org/autistic-women-non-binary-network-

Twitter is a great place to find Autistics:

Mikhaela Ackerman, Edge of Playground: @EdgeOfPlayground

Autistic Science Person: @AspieHuman

Amythest (Myth) Schaber, Ask an Autistic @neurowonderful 

There are literally 1000s of us on Twitter!

Hashtags to search on Twitter: #ActuallyAutistic #AskingAutistics #AskingAllAutistics #RedInstead

Resources About Autistic Women and Girls:

Purple Ella’s Youtube video “Differences: Autistic Boys and Girls.”

  • This is a really cool video where she sits down with her Autistic daughter and son, discusses some of the ways that girls and boys Autistic traits tend to vary, and asks them about their experiences.

Purple Ella’s video “Autism: Here Come the Girls”

  • Ella and Ros talk about lots of topics related to Autistic women and girls.

Purple Ella’s video “Autism in Company: Diagnosing Women and Girls”

  • Ella sits down with her friend Ros to discuss how girls, women, (and others!) present differently.

Amythest Schaber’s “Ask an Autistic” Youtube series and tumblr.

  • Amythest is an incredible self-advocate whom I admire a lot. They are educated, sincere, and overall just a wonderful person. Their videos were some of the first things I saw about Autism.

Hannah Riedel’s Youtube channel.

Seventh Voice’s blog post entitled “The Gaslighting of Women & Girls on the Autism Spectrum”

  • An eerie, but accurate depiction of what many girls and woman face.

A great article by Fabienne Cazalis and Adeline Lacroix entitled “The Women Who Don’t Know They’re Autistic”

Excellent article about masking by Francine Russo entitled “The Costs of Camouflaging Autism”

An article by Scientific America entitled “Autism–It’s Different in Girls”

Aspergirls: Empowering Females with Asperger Syndrome  by Rudy Simone

31: Complex PTSD

I recently realized just how many of my mental health struggles actually relate back to one thing. Trauma. I would argue that most Autistics sadly experience some level of trauma in their lifetimes. Many of us experience prolonged and repeated exposure to trauma and the results can be devastating. For us, we deal with Complex PTSD, or C-PTSD.

I cannot state enough: astronomical content and trigger warnings for this piece. Take care of you, please!

I’m honestly still learning about C-PTSD and how it affects me. It’s complicated, but to summarize incredibly briefly: PTSD is often related to one event. Complex PTSD stems from multiple traumas, and/or longterm trauma. Although many people know about PTSD because of veterans with the disorder, anyone can have PTSD from a wide range of traumatic events and experiences. Symptoms can include: depersonalization, derealization, dissociation, panic and anxiety attacks, flashbacks, loss of sense of reality or time, emotional deregulation, memory loss and issues, and more.

For the longest time, I knew that I suffered from some level of PTSD. But my misunderstanding of the condition in general– coupled with lots of dissociating and blank spaces in my memory– meant that I didn’t really understand just how severe mine was. In a recent therapy session, one phrase really struck me:

“I feel like I spend so much of my time thinking ahead and planning for the future in order to avoid reliving my past.”

Those were words that I spoke, but it felt like someone else had said them. It still feels that way, if I’m honest. But it was a big moment, and I said it. (You know something you said was important when your therapist pauses the session to jot it down…) Since that revelation, I can’t stop seeing how my trauma influences my present by forcing me to live in the future, all while seeking to avoid the past.

For example, my perfectionism and wildly unrealistic high expectations for myself largely come from a need to try to protect myself. Maybe if I plan out the perfect conversation, I won’t get yelled at or bullied. If I prepare excessively for a medical procedure, maybe I won’t have a panic attack or be belittled by the doctor. If I take all the right medication and exercise, maybe an ovarian cyst won’t make me blackout again. If I know more about earthquake safety maybe I will not freeze during another large one. If I can just be perfect, nothing can go wrong. Easy, right?

Even if I arguably did something “perfectly,” when the result is more trauma… I blame myself. “I should have said this instead of that. I looked weak so they didn’t believe me. I didn’t think ahead far enough and predict this outcome. I’m a child and need to grow up.” To me, a bad interaction or event or failure is 99% always my fault. I am at fault for additional trauma because I didn’t try hard enough or plan well enough. Its never the fault of someone else or even a general situation or event. It’s ridiculous, but it is so very hard to break free from. I literally torment myself. Or rather, C-PTSD does.

Flashbacks are horrible: I am out of my body and back in that car when I got hit hard enough to be pushed across several lanes. I remember the song on my CD skipping in the dashboard. I remember shaking in shock–that didn’t just happen. I wasn’t just hit… Is the other person okay? Am I okay? I don’t see any blood…

But more devastating to me are the “flash-forwards“. My brain will anticipate all sorts of dangers in extreme detail. Again, I am out of my body and feel like I am actually there. I see it all in full color in my brain and I live it. I have seen my loved ones die so many times, experienced trauma after trauma… and although I know it’s not real, on some level it is. I “experience” it.

The weirdest thing is that so many of the symptoms my body and mind attempting to protect me. Dissociation, panic attacks, fixation, compulsions, flashbacks… they are often my brain trying to protect myself in some weird way. It’s this highly sensitive security system that has faulty wiring and trips at minor stresses. And unfortunately, I don’t seem to have much control over it at all.

And the difficulty is that any stress can trigger any part of my C-PTSD’s wildly messed up security system. I have trauma from so many different incidents throughout my life: car accidents, large earthquakes, sheltering while in Japan when missiles were being tested by North Korea, assault, countless medical traumas, terminal illness and death of loved ones, living in Japan during the 2011 earthquake and tsunami, extreme physical pain and sickness, bullying and power harassment, extreme life-shifting events, etc. But they don’t just stay in their own lane and section of my brain. Oh, no. Medical trauma can trigger flashbacks of car accidents or power harassment. News of another large earthquake can cause flash-forwards of losing loved ones to random accidents.

In fact, any extreme stress can trigger symptoms in any or all of those categories for me. It doesn’t have to be a particular related trigger to set me off. Any extreme stress can. COVID-19 is one reason I have realized just how bad my C-PTSD is, because it’s a bunch of triggers all wrapped up into one, tied with a big-old stress bow. And the unfortunate thing is, it’s all related. C-PTSD affects anxiety, depression, ideation, sensory overload, and more.

The stresses of the world today have triggered my C-PTSD into a realm I didn’t know existed. I dissociate more than ever. This is when my mind goes completely blank and I leave my body for a time. Sometimes I am aware it’s happening, sometimes I’m not. Sometimes I know how much time has gone by, often I do not. I’m getting better at recognizing when it happens, but sometimes I just have to let myself drift…

My flashbacks and flash-forwards come often and in stunning detail. Breaking through those flashes takes extreme effort many many times before I am able to reorient myself. Something that I still don’t have a full grasp of is the memory loss of C-PTSD. There are very large chunks of my life that I simply don’t remember. It’s odd to me that those memories are gone while the technicolor traumas remain… That’s a rabbit hole I’m not quite ready to go down yet.

What’s Helped So Far

1) Therapy

C-PTSD is something I have only really begun to work on in therapy. One thing that helped me pre-COVID was “Worst- and best-case scenarios are not nearly as common as okay-case scenarios.” That helped me a lot to remember that things are often just meh. Not traumatic, not elating. Just meh. In light of COVID, I’m struggling to use this particular skill, but I have hope for using it again in the future…

2) Music Therapy

I haven’t been able to see my music therapist in a very long time, but one thing he taught me is using a particular song to help guide my brain out of flashbacks and flash-forwards. When I am very stuck in loops of horrors, I will hum or sing this song and it will help me transition out of that cycle. Music is the key to jumpstart happier parts of my brain to allow me to break free.

3) Knowledge and Acknowledgment

Just knowing that C-PTSD is an actual, valid thing is huge. Learning about flashbacks and dissociation and having a name for those things. Being able to read more and connect the dots and recognize triggers. Understanding why things are happening and how to start helping myself. Seeing others talk about their experiences. As always, this is why I am sharing my inner world for all the internet to see. Because if just one person finds light in my words, it’s all worth it.

Thoughts from a Quarantined Autistic

I’m writing this post from self-quarantine, practicing social distancing. Luckily, I have no COVID-19 symptoms (so far). I am isolating myself to help slow the spread of this deadly virus, as well as protecting myself as I’m in the higher-risk category. I’ve had a lot on my mind during this first week of isolation and have been struggling with some pretty tremendous mental health concerns.

Despite all of this, I’ve also found some ways to find some calm and order. I want to share some of them with all of my readers—Autistic or not. As a multiply disabled, introverted Autistic, I have a unique perspectives to offer. I generally don’t leave my house much when I can help it; I have a lot of online friends; I’ve been bed- or couch-bound countless time in my life. Social distancing is kind of my default, even if it’s not always my choice.

While my thoughts aren’t going to help everyone, they may help someone. And that’s all I can hope for.

1) Keeping any routine possible; Adapting what has to change

This is something I practice anytime I cannot follow my normal routine in general. Keeping to a routine—even an adapted one—is key to my mental health. Because I also have ADHD, that can sometimes be tricky, but routine doesn’t have to look like a rigid frame. It can be bendy and flexible if that’s what works for you. A step in your routine can be as simple as “In the mornings I will do something relaxing before work.”

Even though I am working remotely now, I have been doing my best to get up and go to bed at the same times. I eat breakfast at the same time, and start work at the same time. That familiarity and rhythm brings comfort and certainty in a very uncertain time.

But what about things that have to be changed? For example, what if you usually visit your favorite coffee shop with a friend after work? In cases like that, I Skype that friend, brew some tea together and talk as usual. Usually go to the gym at night? Look up YouTube videos of workouts you can do at home, and work out during your usual time.

It’s not the same, but it’s familiar and that can bring calm. It’s taken several days of my “new normal” routine to feel natural, but now it brings me a lot of comfort when I’m anxious.

2) Putting locks on social media apps & limiting news

I often compulsively check social media during my downtime, partly because so many of my friendships are online, and partly because I find social media to be a nice distraction. But right now, that’s not the case. I find myself getting sucked into hyper-focusing on news, perseverating on local events, and worrying about friends and family (and everyone in general).

I ended up setting up Screen Time on my phone for all social media apps. That’s a setting on iPhones that can help you control your app habits; there are similar things for other phones. I gave myself a 30 minute cut off for social media. That means when I reach that 30 minutes, a notification will pop up and let me know. I then have the option to snooze that reminder for 15 more minutes of viewing time, turn it off for the day, or just close that app.

I’m finding that this helps with executive dysfunction and getting trapped in a loop, losing hours of time to stress and panic. It’s nice because it also doesn’t make me feel out of control. I am able to dismiss the reminder, and it will remind me again after 15 minutes when I can then decide again if I need a break or not. It holds me accountable, but also gives me the power of choice when my brain can’t necessarily regulate itself.

3) Dual tasking when I need distraction

I’ve found that if I try to sit down and do something to relax and distract myself from the current situation, I will end up either doing something else by accident or heavily dissociating. (Sometimes both because I’m an overachiever.) That’s not helpful, and actually really distressing!

In the last week I have turned to giving my brain dual tasks. For example, I will cross stitch while listening to the TV. I’ll listen to an audiobook while I play a simple game. Color and listen/sing to music. That’s been the key to me sticking with a distraction long enough to actually de-stress! I’ve finally been able to relax now with that strategy and it’s doing a world of good for my mental health.

4) Being gentle with myself regarding mental health

(Content warning: eating disorder, OCD, mental health spirals, etc.)

In the last few weeks, I’ve definitely noticed an uptick of mental health issues in myself. My eating disorders—even though I’ve been doing really well in treatment—tell me that if I eat too much we will run out of food. Then my wife will have to leave the house and of course she’ll get sick and she’ll die and then I’ll suffer and then I’ll die… Oof. The eating disorder is latching onto very real fears and just running with it.

I’ve also seen a huge relapse with obsessive compulsive issues. I had pretty severe OCD as a kid, but have recovered to the point that I have only really have mild OCD tendencies. In the last week in particular, I’ve really struggled. For example, one night I got “stuck” in the shower for 30 minutes, washing my whole body several times, then standing there as my brain told me I still have the virus on me and if I get out now I will murder everyone I know and love. I couldn’t seem to make my body move. So I thought maybe should call to my wife to come help me, but my brain said if I did, maybe she would trip on the way up the stairs and hit her head! (OCD is a real piece of crap.)

My agoraphobia—which I always struggle with to a certain extent—is absolutely and positively thrilled to have a logical reason to not leave the house. So I struggle to even go on short walks. And I won’t even start on anxiety because… it makes me anxious. Hah!

So yes, it’s been really rough. But ultimately, I have realized that I gain nothing by being critical of myself. This situation is hard. It’s scary. It’s really horrifying. And my brain is actually doing it’s best right now. Strange as it sounds, it’s trying to protect me and it’s just sort of… glitching. It’s similar to the concept that I talked about regarding my chronic illnesses in 28: Chronic Illness: Am I “Broken”?. My body and mind are compromised. And they’re doing the best they can right now. What I can do is be gentle and give myself time to rest and recharge.

5) Positive output

The last thing that’s been incredibly helpful for me is making something positive. My wife and I made a cover video of the song “Tomorrow” from Annie to share with our loved ones. It started as us unwinding at lunchtime and evolved into my wife writing a piano arrangement. We made the video because we needed it ourselves. We feel so helpless and powerless. We did it to uplift our family and community, but we also just needed to do… something, anything! Something to put a bit of happiness and hope out into what is an extra dark and scary world right now.

Putting something out into the world doesn’t have to be extravagant. It can be sending an email to a friend, making a piece of art, sending a gift to a neighbor, or donating money to someone in need… something to remind yourself and others that the sun will shine again.

A picture taken in the woods during fall when the trees are radiant orange. The sun shines through the trunks toward the viewer.
“Tomorrow”, taken by Alex Earhart

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
Please don’t use: woman, lady, miss, missy, girl, etc.

1) What will happen to Seeking Sara?

My blog will still be here and I will still be writing! Seeking Sara is transitioning to Autistically Alex. Aside from a change in title and design, Autistically Alex will still be run by me, Alex, and the writing will stay the same. (Well, hopefully it will continue to evolve the more I write…) I will discuss more queer LGBTQIA+ topics openly, but will continue other writing like my Sensory Series, eating disorder topics, sensory overload and meltdowns, etc. as well.

2) What’s Non-binary?

Depends who you ask, but for me… I feel wildly, painfully uncomfortable (increasingly so) with being labelled a woman, lady, miss, girl, etc. But I’m also not a trans man and he/him pronouns and man, boy, mister, etc. also don’t feel right. While I am more comfortable expressing and presenting my gender expression (what I wear, how I cut my hair, etc.) toward a more masculine appearance, I’m not a trans man. I’m non-binary, as in “not on the binary” of man and woman in regards to gender identity. I sometimes fluctuate back and forth, and could be considered gender fluid as well.
Scroll down to number 6 below for links to more general information on trans/non-binary/genderqueer stuff.

3) Is that a real thing?

I can confirm that yes, yes it is. I tried for a solid decade to avoid calling myself non-binary. It was ten years of wondering what my gender identity was, wondering if I was a trans man, wondering why neither man or woman felt right, etc. When I found out non-binary is a thing, it instantly clicked, but I still fought against it for years. I’ve had to sort through a lot of internalized transphobia. Trust me. Non-binary is very much a thing and I am it. In fact, many many many cultures have/had more than two binary genders represented in their cultures. The scientific and medical communities also document and affirm the presence of more than two genders. Look it up.

4) Is singular they/them a thing?

Yes, and you use it too! If we describe someone in a mystery novel, the detective might say, “Whoever they are, they sure are smart. They covered their tracks so that no one would suspect them.” As someone who needed to learn to use they/them pronouns for other people, I totally appreciate that this can be super hard to learn to do! Even I still make mistakes. Give yourself time to get used to it.

5) How did you realize you’re non-binary?

A huge part of my journey was realizing how much I identified with a variety of media as a child and teen:

  • Disney’s Mulan, who sings Reflection
    • “Look at me…
      I will never pass for a perfect bride
      Or a perfect daughter
      Can it be I’m not meant to play this part?
      Who is that girl I see, staring straight back at me?
      Why is my reflection someone I don’t know?”
  • Ranma 1/2, a comic book character whose sex changes when splashed with hot or cold water
  • Sailor Uranus, AKA Haruka, who is described as being “both male and female, possessing the strengths of both genders”, and who often presents her gender expression leaning toward the masculine side, though may be genderfluid.
  • Tamora Pierce’s “Song of the Lioness” book series where Alanna becomes Alan in order to pursue knighthood in a patriarchal world
  • The Takarazuka Revue, a real-life professional troop of elite Japanese performers who play both male and female roles in their elaborate plays and musicals

2016 Takarazuka King Arthur
Still image from Disney’s Mulan
A scan from Naoko Takeuchi’s Sailor Moon

To be clear, none of these media “made” me non-binary. They were a relief to read or see because I could relate to them. And loving and/or relating to these characters doesn’t automatically make someone non-binary or gender queer!

Another huge part of my self-discovery was realizing how much I dreaded getting dressed each day when I had mostly women’s clothing in my closet, along with accompanying gender dysphoria. Performing “feminine roles” (defined by society) and being called a woman, girl, miss, etc. increasingly causes a sort of nails on a chalk board feeling inside of me.

The last huge component for my journey to self discovery and acceptance was seeing people around me be openly genderfluid and queer. At a conference, a colleague wore a suit and tie and I thought, “…I can do that??” A friend changed their pronouns to they/them and I thought, “I’m so jealous… Wait, I am? Why?” A fellow Autistic blogger was courageous enough to change their site title and pronouns and I thought, “I want that freedom too.” A friend had the courage to change their name and pronouns and I finally spoke the words aloud, “Can I do this?”

Again, these people in my life didn’t influence me to be genderqueer. They gave me the courage to be okay with being myself, and I am forever grateful.

This is a huge part of why I am coming out. Not only is being closeted incredibly painful and draining, I can’t keep silent when others may find self acceptance and courage from me being out and authentically me.

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 Wife

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 (whom I no longer work with) 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, Alex. 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.

%d bloggers like this: