Why am I so tired?

Today has been one of those days where I can barely force myself to make myself eat. (In fact, I ordered in breakfast.)

Yesterday felt like that, too. And the day before that. And all this week, really.

I had one thing I had to make sure I did this week, which was to attend an online conference, and I am happy that I made myself do that.

The rest of the week I spent trying (and failing) not to sleep at weird times. But I still slept for large portions of a couple of days this week.

I don’t know.

About a month ago, I stopped taking the antidepressants I’d been on for the last year or so (Effexor). I haven’t been completely off antidepressants for probably a few years. I try every once in a while; in the past, I’ve crashed hard and forced myself back on medication in order to feel stable.

I think differently these days than I used to. I’m not prone to a lot of the traps my brain would set off when I was upset about something.

Right after I went off the meds, I was hyper(?) or manic(?) maybe(?)… at any rate, I slept very little, woke up early, and spent a lot of time frantically researching and writing.

I wrote a bunch of emails. I got caught up with life. I was just on top of everything.

Then, about a week and a half ago, I was confronted with yet another chapter in a long saga of being gaslit by autistic “leaders.” I had the panic attack. I had the walk. I thought about how I wanted to respond. I wrote things. I deleted things. And ultimately, I just decided I wanted to forget about it.

And that was fine, but it’s thrown me off. Now I’m sleeping all the time instead. I just watch TV, and I don’t even really want to watch TV, but I also don’t really want to do anything else either.

My body feels like I’m carrying invisible weight. I don’t want to be awake. I just want to sleep instead, until I reach a point where I’m interested in things again.

But honestly, WHY?

Is it because I’m autistic and I just did too much too fast?

Is it because I’m having a depressive episode?

Is it because I have poor nutrition habits so my body is just unhealthy?

Or is there some other random reason that I’m chronically exhausted?

blegh.

A Reflection on Motor

Editor’s Note: I wrote this blog post back in February, tucked it away, and never posted it publicly. I was reminded of it recently while reading my friend Damon’s recent post about his experiences with apraxia. I’m posting it now as both a statement of solidarity to my nonspeaking friends and to encourage fellow neurodiversity advocates to keep motor challenges as much a part of the conversation as other neurological differences.

The advocacy niche that decided to adopt me is extremely specific, but I feel like I fit there. I am part ally and part insider, an autistic with fluent speech among nonspeaking advocates. This niche is theirs, but they have kindly invited me in.

I recently drafted a blog post about the responsibilities of being an ally to nonspeakers. I fussed about the words I was using often. I never want to sound like I’m centring myself in a movement that is meant to centre others. I think I’m doing okay, but then I worry that posts like this one might toe the line too much…

…but it’s impossible to not talk about my neurosiblings. There’s something essential that we share, and our unfortunate communication barrier has kept us from exploring it together. And I know that, because my experiences intersect with nonspeaking autistics just as they intersect with speaking autistics. I feel the same connection of “me too!” when I read their work.

That has led me to think more critically about the parts that we don’t seem to share, and it turns out that much seem to only be different on the surface.

One of the core struggles for nonspeaking autistic people deals with motor planning. I’ve read many nonspeakers referring to this as a “brain-body disconnect.” Essentially, the body doesn’t reliably follow instructions from the brain. I don’t think I experience a disconnect… but I do experience what could be characterized as blips? Or brownouts?

It feels like I’ve stopped knowing what to do in the middle of doing it. I’ll be walking, and if I’m not paying attention to what I’m doing (like if I’m talking to someone else), my ankle will roll, I won’t pick my foot up high enough, or I’ll just step down the wrong way.

When walking around indoors, I am likely to bang into counters, tables, and doorways. Sometimes I just lose my balance a bit and sometimes I just didn’t walk straight for some reason.

I move faster than I mean to. I throw things out of my hands by accident because my grip isn’t tight enough. I spill things. And I am indeed that person who has dropped their phone on their face while in bed. Many times.

I am able to speak, but I have a lisp. (My tongue is in the “wrong” place when I pronounce the “s” sound.) I tumble over words, and I don’t have enough time to think about what I want to say. If I am speaking, it’s harder to do literally anything else. It’s an energy drain. I relate in that sense.

I become unable to speak, but only temporarily. What it feels like when I can’t speak depends on the context. When I am just waking up or just falling asleep, it is hard to speak. I feel like my face is heavy and my jaw is locked. I don’t want to move, either, because being completely still is currently perfect.

When I’m having a meltdown, I can’t stop crying. I hated being told to “use your words” as a child in distress, because it only deepened whatever frustration I was feeling in that moment. I was able to think them, but they wouldn’t come out of my mouth.

I have had many situations where my emotions have shut me down completely, where someone might be asking me what’s wrong, and I want to say something. My brain screams words, but nothing happens.

There is a narrative thrown about that non- and minimally speaking autists are fundamentally different from speaking autists, but I find that the more I understand their experiences, the more I understand my own.

The fact that we are all so likely to have a relative with autism if we are autistic ourselves means something. Speaking autistics regularly have nonspeaking children, siblings, and other relatives. We may seem different to outsiders, but there is no separating us. Our similarities are obviously from the same genes.

Where else do our similarities lie?

Thirty Two

What is the essential part of me?
What am I synonymous with?
What am I the epitome of?

I am a quiet baby who rarely cries.

I am colours in motion on the wheel of fortune®.
I am tiny red berries in my neighbour’s front yard.

I am the natural conclusion of a satisfying task.
I am the crackling sparks of one unexpectedly unplugged.

I am a precocious child brimming with nervous energy.

I am crisp white paper, folded and stapled.
I am persistent ideas with a false urgency.
I am a tangle of stories which must be told.

I am an air of haughtiness lined with good intentions.
I am smart and should have known better.
I am the anxiety of not knowing the answer.

I am a boy-ish girl in sweatpants, shirts, and shorts.

I am struggling to make friends.
Then, I am struggling to keep friends.

I am “four eyes.”
I am “ugly.”
I am “gross.”

I am gullible.
I am wary.
I am easy to provoke.
I am easy to ignore.

I am a perfectionist because I have to be.
I am loud until the only option is to be quiet.

I am a spindly pre-teen with my sleeve between my teeth.

I am digital dissociation.
Or I am childhood depression.

I am a hostage of my emotions.

I am a locked volume dial.
I am an explosion of tears.
I am the volcano boiling under my skin.
I am the lava running down my arm.

I am a clumsy teenager who is desperate for connection.

I am shared awkwardness.
I am unbridled enthusiasm.
I am purple silk.

I am exploited naivete.
I am resigned compliance.
I am torn fabric.

I am confused and young and cornered.
Then, I am older and tired and know better.

I am an annoying friend who is terrified of being left behind.

I am unsure of my place in the world.
I am starting to realize that I need help.
I am the first step of a long journey.

I am a girl-ish boy in plaid button-downs and jeans.

I am a student of machine shorthand stenography.
I am a college diploma holder.

I am consistently inconsistent and still struggling.

I am not what people expect me to be.
But I am not sure what people expect me to be.

I am an indifferent lover who is easily replaced.
Or I am hardly a lover at all.

I am a burnout.

I am burned out.

I am the clouds that keep me company.
I am the connections made through disconnection.
I am the grounding force for the tornado above.
Or I am on tiptoes.

I am glowing embers of fires once burning.
I am ferocious flames that swallow what remains.

I am a connoisseur of boundaries.
I am a lifelong lover of language and lingo.

I am critical thought.
I am incessant grace.

I am justice and fury and takedowns.
I am passion and reaction and meltdowns.

I am honest.
I am loyal.
I am trying.

I am a secret idealist with imagination trapped somewhere inside.
I am a perpetual seeker of knowledge in pyjama pants at lecture.

I am an organized mess of a human, born 32 years ago.

Solitude

There were two main periods of my life where I felt the deep pain of being alone.

The first was my being ostracized throughout most of my elementary years, from grades three to eight. I moved from a different school where I had established friendships. I literally didn’t recover until high school when an established friend and I reunited.

In elementary, I sometimes was able to keep friendships with “new” students, but as they developed more friendships, they realized that I generally wasn’t welcome, and eventually didn’t feel I was worth bothering to defend.

I had no diagnosis back then, but kids don’t need someone’s diagnosis to tell when that person is “different.”

The second was just after high school and was slightly different. I moved out west to live with my partner of the time. They were very jealous and controlling, and it was difficult to make friends while walking on eggshells.

Again, I was isolated. It was different because I had chosen it at first, but both events were similar in that the people involved used me in abusive ways. They each made me feel like I had no other choice, that I was stuck, and that I didn’t deserve better.


I feel alone lately, but it’s neither good nor bad.

A few years ago, I moved out of the city, because it was becoming too hard to afford it alone. On the heels of making that decision, I became single. And later, slowly, almost all of the rest of my close relationships disintegrated as well.

I’ve never fully recovered from that. I don’t make ‘real life’ friends very well, and I never have.

And everything is too much now, anyways. I’m barely able to put anything into the friendships I have been able to maintain. 

I’ve been alone for a week now, but it’s neither good nor bad.

It’s just normal.


I’m tired, and some days I feel like there is nothing to life beyond working and exhaustion.

The government says I don’t fit their definition of “a person with a disability.” 

I think: do people *without* disabilities usually spend their entire spring break in bed? 

I keep saying that I’m fine, because my mood is okay. But antidepressants have not cured my fatigue. 

I’m tired, and if work and exhaustion are the only two components of life that I’m allowed to have, what even is the point? 


Anyways, I’m okay. 

I’m worried about the hearing (re: disability status) ruling against me.

I’m worried about ever getting out of debt if I can’t force myself to “try harder.”

I want to do a lot of things that I should have finished already.

I feel like a failure more often than I admit to. 

And I think I need a massage. But I’m okay. 


It’s a paradox. People drive me crazy, but I don’t like being alone.

New Year’s Reflections and Resolutions

Happy 2020!

It was almost a year ago that I opened my Twitter account and waded into the world of autistic advocacy. I have learned so much since that time.

I’ve interacted with people of all kinds…

…autistic people who want to be treated and cured… and autistic people who want to be accommodated and celebrated…

…parents who are fighting governments to have behavioural therapy covered by insurance… and parents who are fighting the school system to have their children included in ‘mainstream’ classrooms…

…professionals who condescend to autistic people by downplaying self-advocates as ignorant and naive… and professionals who empower autistic people by listening and learning to self-advocates…

If there is one thing I’ve learned, it’s that there isn’t really a black-and-white dichotomy between “good” people and “bad” people.

In some cases, it can be very obvious, but in others, there’s more of a grey area. And while I’m certainly guilty of black-and-white thinking, I’ve always had an eclectic sort of attitude towards most ideas. “Take what you like and leave the rest.”

(Apparently this is a common saying in Alcoholics Anonymous, but it should be part of everyone’s attitude when doing work in self-improvement. Don’t force yourself to like ideas that don’t jive with you personally, but certainly don’t feel bad about adopting the ones that do.)

To my wonderful allies…

I remember starting out last year feeling like there was a very hard line between autistic self-advocates and “autism parents” (as well as professionals).

I want to extend massive amounts of gratitude to the parents of autistic people that I have met since then who let me into their lives, either on Facebook or in person. I also want to extend gratitude to all of the professionals that I have gotten to speak with.

As it turns out, there are thousands of (non-autistic) parents and professionals out there who are amazing allies, and some are doing groundbreaking work in publishing narratives, in doing research, and just in listening to autistic people.

It’s very encouraging!

For those who have opened up to me, I have this to say: I can’t promise that I’ll never let you down. I’m a human being, and there’s always the chance I’m going to say something wrong or have a bad day.

I can promise that you have my loyalty (and my good intentions, even though they sometimes steer me wrong). As long as you’re with us, I’m with you. All movements need allies. Allies who know when to stand up, when to take direction, and when to pass the microphone are a welcome and necessary part of my community.

To my wonderful neurosiblings…

I’ve met so many of you online, and I’ve had the great pleasure of meeting some in person.

We’re all so different. Our needs are different. Our language is different. Our experiences are different.

We disagree on a lot of things. Most of us aren’t influenced by the idea of conforming to avoid conflict, so it doesn’t surprise me that we have conflict almost constantly.

That said, I’ll move away from advocacy as a broad thing and just talk about personal interactions.

I want to extend massive gratitude to the autistic people who have given me platforms to talk about important issues, who have discussed differing ideas with me and stayed open, who have been honest and authentic with me in their interactions, who have validated my life’s experiences with their writing…

…and who have simply just become my friends.

It’s been years since I made more than a couple of new friends (even online). Last year, I made dozens.

Thank you.

To my unknown future…

I change my mind about what I want to do with my life a lot.

Being part of this community has felt right. I don’t know where I’m ultimately going to end up, but it’s going to involve serving and advocating for disabled people — my people.

Something about the past year, interacting with non-autistic parents and autistic parents and autistic kids and teenagers, has changed my mind about something I’ve gone back and forth on for a long time, which is that I think I would like to be a parent.

I know soooo much now. I feel like that knowledge should go to good use. I think I have positive values. I think I’ve learned a lot of coping skills. I think I could be a good role model. I think I could be a good parent.

I can’t have children, though, so it’s a long road ahead if I want to take it (donors and surrogacy and adoption, oh my)… and there are some things I want to do before I become a parent, like finish university.

In the meantime, the idea provides a bit of motivation to me that I’ve been needing. If I want to be a good parent, I need to be able to take care of myself better. If I can take care of myself better, I can take care of someone else better.

I learned this through through activism. Activism generally involves caring a lot about other people, and activists will often overdo it, pushing themselves way too hard. What every activist needs to know is that if you want to fight to the best of your ability, you need to take really good care of yourself.

So that’s my new year’s resolution in a nutshell… take care of myself better, so I can take care of everyone else better.

So far it includes learning how to cook and being more consistent with hygiene and exercise. Those things all need specific definitions and goals, or they’ll mean nothing, so I’ll narrow it down in future posts!

Autistic Solidarity: A Personal Reflection

This article was originally published at The Aspergian.

I started to write this article after I wrote my poem, Unmasking as Autistic Pride, but I put it on hold when a special interest took over. I want to come back to it now.

When I wrote Unmasking, I wanted to make sure that it included all autistic people. There are a few lines about talking, but ultimately, to me, unmasking is about letting my body do what it wants.

Many autistic people, though, have a body that will sometimes compulsively act on its own accord. Many autistic brains tend to be not-so-great at executive functions that plan movement.

I only experience this to a tiny degree comparatively: I don’t lift my feet high enough when I walk and can trip over seemingly nothing.

I’ll be looking where I’m going, but not realize that part of my body is still going to hit something. I don’t have a firm grasp, and things fall out of my hands if I’m concentrating on something else. However, I can stop myself from stimming if I want to.

I can also use my vocal cords, lips, tongue, and teeth to speak. Many autistic people can’t do these things with reliability. I don’t support the use of functioning labels, but it does no one any good to deny having what Mayer Shevin called “fluency privilege.” Instead, I try to recognize where I have advantages that others do not; and when people talk about how they have been discriminated against in a way that I don’t experience, I try to listen.

I digress.

To me, unmasking is becoming “visibly autistic.” I wear ear defenders and sunglasses outside now. I don’t stop myself from stimming if I need to. I try not to worry too much over whether or not I said the right things, used the right tone, or made the right face.

To me, pride is acceptance. People will like me, or they won’t. People will understand me, or they won’t. And that’s okay.

It’s okay, because there are people out there who do like me. There are people out there who do understand me. And many of them are autistic or neurodivergent themselves.

When I’m trying to let go, I think of those people. My people. I think about the others in the world who haven’t been able to accept and embrace themselves as easily, who have a much more difficult time with interactions than I do, who aren’t as fluently-speaking as me, whose bodies move in different ways.

I unmask not just for me, but for others, so that others see someone who is like them, and then maybe they might feel a little bit better about who they are.

When I wrote the line, “I don’t owe the world,” what I meant was that I don’t have to pretend to be normal just for the sake of fitting in. I don’t owe the world a sanitized version of myself that can be deemed acceptable.

If you exist in public while the world is trying to erase you from existence, you are revolutionary. You’re changing the world just by being here, and I am so proud of you.

You should be proud of you, too.