Category: Mental Health

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.

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

27: Eating Disorder Treatment

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

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

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

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

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

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

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

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

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

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

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

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

Initial Steps of My Treatment

1) Six Meals

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

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

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

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

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

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

2) Talking to my doctor

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

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

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

I paused and finally looked at him.

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

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

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

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

“Absolutely. No need to take your weight.”

Phew! Another ally in my court.

3) Challenging the voice of my eating disorder

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

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

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

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

4) Journalling and continuing to read

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

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

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

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

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

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

A meme of a forest path with a blue square of text over it. Text reads, "I have an eating disorder. I began subconsciously using food to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life. As I start down my long path to recovery, I am reaching out to others to say "You are not alone." I have an eating disorder...and I'm going to kick its butt."

25: I have an eating disorder.

Trigger and content warning: eating, food, weight, eating disorder, bingeing, restricting, treatment, recovery.

I have an eating disorder.

It’s taken me a full year to reach a place where I can say that sentence out loud, but now that I have, I feel a tiny piece of its hold on me slowly peeling away. I was diagnosed well over a year ago, but have only started the nitty-gritty of treatment very recently.

So why am I writing about it on my blog?

Well, for one thing, my blog is a place that I can go to write what I’m feeling and it helps me to process things in a constructive way. In a big way, this space has always and will always be for me. A big part of Autistically Alex is unraveling myself and finding out who I am inside. (Alexa, play the Mulan soundtrack!)

But I also want to be open about it because if it weren’t for people in my life being open about their own struggles, treatments, and roads to recovery (including potholes along the way), I never would have been brave enough to seek help. So another massive reason I am being open about this topic is in order to reach out to others to say, “You are not alone.”

The last big reason I am writing about my disordered eating on Autistically Alex is that it is not unrelated to being Autistic. I began subconsciously, (then more consciously, but to my deep shame and suffering) using food, bingeing, restricting, and overall disordered eating to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life.

Bingeing has become a type of self-harm stim to me. Restricting has become a way to control at least something in my life when I so frequently am overwhelmed by the world around me, not to mention my various health issues and disabilities. But these are not healthy or productive ways to cope. The fact that I can see that now is not a small baby step, but a giant, giant leap toward my long marathon run toward recovery.

One reason I avoided seeking help for so long is the uncanny ability eating disorders have to convince you that they are no big deal. Cycles of denial and acceptance are pretty much guaranteed companions during anyone’s treatment and recovery. I have no doubts that I will struggle back and forth for months–and probably years–to come, but now that I know that and accept that, it makes it easier to cope.

So how did I decide I really did have a problem I needed to address?

I’ve known for a long time, but the final tipping point was a journal assignment my therapist gave to me. The prompt was, “What is your relationship with food like? Write a letter as if it were a real person.” The two images below are my letter to food.

(If you are using a screen reader, please click the images. Alt-text is attached.)
An image of a purple notebook page with text on it. The date reads January 1, 2019. Above the date is a branch with red buds. Text reads, "Dear Food, We need to talk. My relationship with you has been unhealthy for 18 years. It's true that I can't live without you, but sometimes you make me feel like I can't live with you either. You are nourishment, energy, life, necessity. You are addictive, controlling, an unhealthy coping mechanism. I need you. I love you. I hate you. I hate that I need you. You provide me with escape... and yet I can't seem to escape you. The solace you provide is temporary and leaves behind regret, frustration, and a shame.
The second page of the letter reads, "Where you soothe, you also blister. You are a gulp of cool water laced with poison. We need to talk. We have 28 years to evaluate--18 of them troubled. You know I won't ever leave you, but things between us are about to change. I can't leave, but I can loosen your hold on me. I will no longer use you as a crutch that feeds me lies and self-hate. We need to talk. Sara." Beside Sara's name is a graphic of a pen. Under her name is a branch with blossoming red flowers.

Was I shocked by what I wrote? Extremely. What started out as a seemingly-silly therapy homework assignment that I was doing only grudgingly soon pulled emotions up from deep within me as the words cascaded onto the page. What I expected to be a few lines or bullet points in my journal turned into a chilling look at how I really felt. It captured the push-and-pull, back-and-forth, ebb-and-flow love/hate relationship that I’ve been running from since I was 10.

But, like I said: Denial and acceptance are at constant war within me. The next day, I was back to the complacent “I’m fine” attitude. But this time… I had something to look back on. I looked at that letter and felt those same feelings rising up in me again. And suddenly… I couldn’t turn back. I couldn’t go back to believing everything was fine…

But more importantly, I didn’t want to.

So what now?

Well, I’m diving in to treatment head-first with my therapist, continuing to journal (no matter how silly a prompt seems), talking with my loved ones who have eating disorders, doing seemingly small things like asking doctors not to tell me my weight, and reading lots.

I’m cycling back and forth between two books:

The simple yellow cover of Body Respect: What conventional health books get wrong, leave out, and just plain fail to understand about weight. By Linda Bacon and Lucy Aphramor.

1) Body Respect by Linda Bacon, PhD and Lucy Aphramor, PhD and RD (Amazon link here).

The pretty yet simple white cover of Life Without Ed: How one woman declared independence from her eating disorder and how you can too. By Jenni Schaefer.

2) The 10th anniversary edition of Life Without Ed by Jenni Shaefer (Amazon link here).

Cycling between the two has been invaluable to me so far. Body Respect challenges our views of weight, fatness, calorie counting, dieting and more, while Life Without Ed shows me that I am not alone, shows me recovery is possible, and teaches me very practical techniques that I can use.

Getting to Know the Enemy

One of the most important things I have learned from Life Without Ed so far is the concept of naming my eating disorder. By doing this, I can begin to separate out thoughts and impulses that are genuinely mine and which are from the eating disordered part of my brain. It also gives me something to roll my eyes at and tell to go away!

One exercise I did once I named my disorder was to write down all the things it says to me. Once again, what I thought was kind of a silly activity turned into me easily writing a page and a half of terrible things that it says to me–and has done for 18 years. That was another eye-opening moment for me and one that will stick with me throughout treatment and well past recovery.

So there you have it. I have an eating disorder.

But I’m not terrified like I have been for years. I feel anxious. Sometimes I feel powerless. Sometimes I feel like I can’t do it. Occasionally I still feel denial. But now I know how to recognize these feelings and thoughts as products of my eating disorder, not myself.

I have an eating disorder… and I’m going to kick its butt.

A meme with a photograph of a sunny path through the woods. Text reads, "I have an eating disorder. I began subconsciously using food to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life. As I start down my long path to recovery, I am reaching out to others to say "You are not alone."I have an eating disorder...and I'm going to kick its butt."

[Featured image, image description: A photograph of a sunny path in the woods with shadows from the trees stretching across it. Text reads “Starting Down My Path to Recovery. Seeking Sara.”]

Yenn’s Autism Show: Sara Earhart

I recently had the awesome opportunity to be interviewed by Yenn Purkis–Autistic author, blogger, presenter, and advocate. Their podcast is called The Yenn Purkis Autism Show (Formerly known as Jeanette’s Autism Show at the time of recording.)

In this episode, we chatted about blogging, the Autistic community, identity, and more!

Click the link or picture below to be redirected to the podcast! Both open in a new tab. (WordPress isn’t allowing me to embed the podcast here for whatever reason.)

The interview: https://jeanettepurkis.podbean.com/e/jeanettes-autism-show-sara-earhart/

A screenshot image of the podcast player showing Sara's interview. The title reads

Yenn’s links:

Podcast channel: https://jeanettepurkis.podbean.com
Facebook: https://www.facebook.com/jeanettepurkisbooks/
Blog: https://yennpurkis.home.blog/
Website: www.jeanettepurkis.com
Twitter: @yennpurkis

We hope you’ll enjoy!

[Featured image description: On the lefthand side is a picture of Sara in front of Niagara Falls. Sara has sunglasses on top of her blue hair, noise-cancelling headphones around her neck, and a plushie duck in her hands. On the right is a blue box with the words “Podcast Interview. Talking about Autistic identity and community, blogging, gender, and more! The Yenn Purkis Autism Show: Sara Earhart” A small drawing of Yenn is pictured in black and white. They have their eyes closed and are smiling widely while holding a framed picture of their apartment.]

22: Depression

If at any point this post triggers you in any way, please please do not feel obliged to continue to the end. Feel free to put it aside and come back later. Feel free to put it aside indefinitely. That’s ok! Don’t feel like you have to read it at all if it will not be in your best interest. [Trigger and content warning: this post deals with severe depression and suicidal ideation.] Crisis numbers are listed at the end of the post.

Take care of you. You are important. You matter. You are enough.

I’m beginning to feel safe and myself enough to tackle what I’ve been going through recently. I’ve had to take several steps back from writing to take care of myself, but now I think I need to write about it so I can move on.

I’m just now coming out from behind a wall of clouds. I’m not “out of the woods” quite yet, but I can now see the edge of the forest and know that I can make it there.

About a month ago, my doctor started me on a new medication. I was really excited to be taking it, as it can help with a lot of symptoms I experience from a chronic illness. The first week or so, everything was fine and I was feeling optimistic and ready for the exciting changes. The second week, I noticed I was having strange bouts of moodiness and mood swings. I noted the change in my psychotherapy session and my therapist immediately questioned my new medication as it can affect hormones. We decided to keep an eye on it and see where things went…

By week three, there was an abrupt and terrifying change in my mental state. I began to experience sudden bouts of extreme, deep depression and suicidal ideation (thoughts about death and/or suicide without intention or a plan). It was especially bizarre because I’d experienced clinical depressed before as a teenager; I went through a period of time when I was about 13 or 14 when I never thought I’d feel happy again. But I haven’t been truly, clinically depressed for 15 years and this depression was so, so vastly different.

I experienced what I described to the alarmed nurse over the phone as “these bouts that feel like clouds coming in front of the sun, then pulling away again.” Darkness and utter hopelessness, followed by moments of clearheaded certainty that something was very, very off in my brain. I’d be tackled with soul-crushing, agonizing, deep sadness and hopelessness followed by “normal” brain functioning where I would reel from the shock of being so devastatingly knocked off my feet. Needless to say, the nurse called me back immediately with instructions from my doctor to stop the medication and either go to the ER or call 9-1-1 if I was in any danger. Because I was in direct communication with my therapist, in a safe location, and knew the difference between suicidal ideation and intent, I was able to remain out of the hospital until I could visit my doctor’s office with an emergency walk-in appointment.

There were several things that set this experience apart from the clinical depression I experienced as a child:
  1. This has been a strange in-and-out depression that slams me to the ground at the most unexpected times. As a teen, I experienced a numbing, near-constant depression. As I mentioned before, this has been vastly different. The episodes have been tapering off in frequency and intensity in this last week, but will probably continue for at least another week or so until the medicine is completely out of my system.
  2. The fear that this isn’t medicine-based at all, but me spontaneously going from pretty darn mentally healthy to devastatingly unhealthy in the space of a few weeks. Despite my therapist, the nurse on the phone, my doctor, the physician’s assistant I saw for the emergency follow-up appointment, and my wife all telling me it’s the medicine, it’s been an exercise in extreme trust in both myself and others that this is not me, but the medicine.
  3. The fact that I have little to no control over it. Of course, as a teen I couldn’t “control” my depression either. But with this medicine-induced depression, my therapist noted that it’s not situation-induced or even chemical imbalance-induced. I have to sit this out and wait; my normal coping mechanisms and strategies don’t work and don’t “speed it up” because it’s the medicine in my system causing it, not my brain. My therapist has encouraged me to allow myself to feel: “Stop trying to go around, under, or over it. You’re going to have to go through it.”

It’s been one hell of a ride so far. I’m fortunate to have an excellent therapist and empathetic doctor and an even more incredible wife to help me through a really disturbing few weeks of my life. My friends have been there for me, my Twitter followers and friends have showered positive gifs and silly pictures on me, my parents have video-chatted with me. With their support, it comes down to me being patient and riding this out.

This experience forced me to confront some really scary things from my childhood depression, but ultimately, I’m choosing to see this as a productive (not necessarily “positive”) experience. “HOW?” you ask?

Through this, I was forced to face the fact that one of my greatest fears in life is being depressed again. Of being in a place where I thought about suicide and couldn’t remember ever being happy. Through facing this fear (albeit against my will) I’ve realized that even if I face depression again, it will never be the same as it was as a teen. I am not a child anymore.

I’ve always said that anyone who truly wants to return to childhood isn’t remembering it accurately. I’m not saying I had a bad childhood. But children lack autonomy and control; they lack understanding of many things outside of their control. Their brains are not fully developed. They can’t always communicate what they are feeling and that they need help. They don’t know just how many options for help and treatment are out there.

Additionally, the nature of this coming-and-going depression has forced me to look a phenomenon straight in the face and stare at it unwaveringly. It’s a strange thing when you’re truly depressed: sometimes you literally can’t remember the feeling of happiness. Despite logically knowing it can’t be true, you can’t remember ever being happy. It’s your brain chemistry tricking you. The same is true when you’re not depressed: you truly can’t fully remember what it’s like to be in that bizarre mindset where everything is hopeless and nothing positive. Your brain doesn’t always reflect reality.

That’s part of why I’m writing this post. To remember.

I want to remember because I want to recall that–when I feel like this–it’s my brain that’s changing, not reality. In reality, there are so many people out there to help: therapists, psychologists, psychiatrists, doctors, nurses, specialists, spouses, partners, friends, family, colleagues, internet friends, strangers… There are always options: seeking help, calling a hotline, going to see a doctor, going on medication, in my case: going off a medication, trying a different medicine, seeing a therapist, crowdfunding money to afford to seek services, going to the ER, being hospitalized, talking to friends, reaching out to a loved on, dropping some responsibilities, taking care of only what you have to, focusing on the basics, seeing a psychiatrist, moving back in with family… the list goes on and on. There are limitless possibilities, but my brain can’t see them when I’m blinded by fear.

But now, if I ever experience depression again–be it situational, longterm, clinical, medicine or hormone-induced, or otherwise triggered–I can look back at this post and have hope that those clouds will clear and I will be okay.

USA

Lists of international suicide hotlines:

If you have trouble reaching out, cannot find a number, or have an unsatisfactory call experience, please do not give up. There is help; there are options. Try a different number, go to the closest emergency room, or call 9-1-1 (or your country’s emergency number).

[image description: A dark, cloudy day in Japan. The photo overlooks a small city with many buildings. Off in the distance, rolling mountain ranges cover the horizon. Bright rays of sun are shining through the dark clouds.]

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