I’m back.

It’s been a long, complicated year for me. I graduated with my master’s, got two new jobs, started the process to adopt with my wife, and recently moved. That’s a lot of change for me and I’m not particularly good at dealing with change. I’m getting better at it, though. Practice, I guess.

I’ve missed being active in the autistic community but I haven’t had the spoons for it. Things are beginning to settle down, though, and I desperately want to dedicate some time to connecting with the community I hold so dearly. Autism Acceptance Month seems like a good time to me. 🙂

So, hiatus is over. I’ll be posting a new blog about acceptance tomorrow to counterbalance some of the “awareness” bound to clog our feeds. ♥

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Autism Acceptance Day Self-care Checklist

Today is probably going to be stressful for a lot of autistic people. Misinformation, hateful A$, misplaced sympathy and offensive opinions are going to be all over the place, all day long. Especially if you’ll be spending a lot of time on social media. Here are some reminders for myself and anyone else needing care today. ♥

  1. Take regular breaks. Spending long periods of time reading or participating in the Awareness/Acceptance discussion is hard on you, emotionally and physically. Set a timer to go off in regular intervals as a signal to do something else for a bit.
  2. Be happy. Have something you love waiting for you during a break. Favorite tv show, favorite song, favorite cat, etc.
  3. Stretch. You might be really tense without even noticing. Stretch those muscles!
  4. Watch this video of a sloth taking a bath.
  5. Stim. You won’t need reminded but how about a reminder that stimming is fantastic?
  6. Drink water. Have you had enough water today? Has anyone? Ever? Probably not.
  7. Browse #ActuallyAutistic. Anywhere, really. Twitter, Tumblr, Instagram, Facebook, WordPress. If you’re prone to venturing off into #autism land (like me), it might be good to get back and remind yourself that you’re not alone.
  8. Take a selfie. You look really good today.
  9. Listen to the rain. It’s so soothing…and sleepy. (9.5 Take a nap?)
  10. Eat regularlyNeed some low spoons food? 

 

p.s. the link preview picture is not my dog. Unfortunately. 😦

Preparing for April pt. 3

There are plenty of posts on boycotting Autism Speaks. One more wouldn’t hurt.

orgs

Image description:
[pale purple and yellow background with dark text]
This April, don’t support an organization that harms autistic people.
[crossed out logo for Autism Speaks]
Support one built by autistic people, for autistic people.
[logos for the Autistic Self Advocacy Network and the Autism Women’s Network]

It’s okay to say autism

When I was 15, I sat down with my mother and told her that I was a lesbian. For the next couple of years my sexuality was referred to with a look, a nod, a hand gesture or, if she had to, a whispered “you know.” We’ve come a long way but it took a long time. 

When I was 23, I sat down with my mother and told her that I was autistic. She was loving and supportive but, like a lot of people, she didn’t know much about autism. Also like a lot of people, she had a negative connotation and mentioned that she wouldn’t be telling anyone. She says the word autism to me now but she hesitates each time, like she’s wondering if she should really be saying it aloud.

The Sapir-Whorf hypothesis states that language determines or greatly influences thought. Linguistic relativity is debated but in this instance, at least, I think it’s relevant. What does it do to a person when who they are inherently is stuttered over or not said at all?

Very few people in my life say autistic. There’s my wife, my autistic friends…end of list. My neurotypical friends don’t say it, don’t refer to it, probably don’t think about it. My in-laws are open, accepting and accommodating and even they avoid the word autism when we talk about it. I feel its absence each and every time—a black hole that threatens to suck in my self-confidence and identity.

I’m as open about autism as I’ve always been about queerness. And as with my sexuality, I only ever keep it a secret when I worry about my safety—emotionally, professionally or physically. So, a lot of people know I’m autistic: my professors, classmates, coworkers, friends, family, acquaintances. And no one says autism or autistic or disabled. Why? Why don’t they say it? “You won’t catch it if you say it,” the words I repeated so often as a teenager to my mother, pop up each time it’s ghosted over.

Is it a reflection of their thoughts—that autism is a taboo subject, something that we dare not speak its name? Is it because they disagree with the cavalier way I discuss my disability, almost like it’s a normal part of life? Is it a worry that they don’t know the terminology well enough to not offend me? Do they think it’s too serious to discuss with levity? Whatever it is, it’s determining or strongly influencing my thoughts.

Sometimes I catch myself thinking that maybe it’s too personal and I should keep it to myself. Sometimes I hesitate talking about being autistic, even to people I’m close to, because it makes me feel self-conscious. I should not feel like I can’t talk about my disability just because other people are afraid to.

Autism is a big part of who I am. Sometimes I want to talk about a new special interest and how happy it makes me or I want to laugh at how terrible I am at picking out furniture because I have bad depth perception. Sometimes I need to talk about how drained I feel because I had a meltdown recently. I can talk about these things without naming autism but that erases a larger picture of who I am. By continuing to dance around it, I’m afraid I’ll continue to internalize a wrongness connected to my identity and I refuse. I fought those feelings when I came out 13 years ago and I’ll fight them now, too.

We can talk about autism. We can say autistic. It’s not taboo, it’s an everyday part of my life. It’s not too serious or sad or tragic. You won’t offend me if your heart is in the right place. After all, I still love and talk to my mom every day and she used to wave her hand back and forth to mean gay. So, you know, there’s hope for everyone. ♥

A message to my autistic community on grief and tragedy

In my experience, a large part of passing includes trying to mimic the way others respond to grief. It is in these moments, when emotions are high, that I have experienced some of the strongest backlash for behaving differently. Not expressing emotions outwardly or immediately comprehending the scale of a tragedy has resulted in being called cold or heartless.

This is not true. It’s not true of me and it’s not true of you.

I may not cry or exclaim loudly, but I feel heartbreak at the suffering of others. I may not engage in conversations about what has happened, but it isn’t because I don’t care. It’s because actively discussing something painful amplifies my feelings of outrage or hurt until I’m unable to escape them. It’s physically and emotionally taxing.

Typically, people discuss, debate and even joke as a way of processing intense emotions and as a way of feeling grounded when tragedy makes them feel disconnected from humanity. If that is not how you cope with strong emotions, don’t let others tell you that you are less.

You are important, your feelings are valid and you have the right to express them in the best way possible for you. No one has a patent on expressions of grief. We are all trying to find a way to live in a world with needless suffering.

A good place to start

I’m Stef. I’m 27, married, queer, a copywriter, grad student and keeper of bees. I live in Minnesota with my partner of eight years, my big cat, Spencer, and two lovely parakeets.

I was diagnosed three years ago after a long history of being misdiagnosed and over-medicated. My relationship with Jesse (The Neurotypical Wife) can easily be split into Before Diagnosis and After Diagnosis. BD we constantly struggled to understand each other, used coping strategies that never seemed to work and I believe our relationship survived only by the fierce determination of lovesick 19 year olds. AD I had answers for questions I never knew to ask but I had a lot of misconceptions about autism. I rejected that I was stuck like this, in a perpetual state of confusion and anxiety with no hope of medication or treatment to make me normal. Mostly, I grieved for the relationship I thought Jesse deserved but would never have. Thankfully, I was far too selfish to let those thoughts come between us.

The next two years slowly made way for understanding and acceptance. Jesse and I learned so much, about ourselves, each other and our relationship. But even with a new vocabulary and approach for communication, we still got things wrong. We fell into bad habits and unhealthy thought patterns about neurodivergence. A big part of the problem was that I was ashamed of being autistic and subsequently plunged us into isolation as we tried to figure things out. Those years were difficult but hopeful, as we constantly tried to find a foothold that would propel us into normality. Jesse’s infinite patience, open-mindedness and willingness to change felt like a protective barrier around our shaky relationship, keeping us steady from the outside.

Even while in partial denial, I consumed as much information about autism as possible and found my way to a community that celebrated who I was rather than condemning it. I discovered self-respect and confidence in the stories of other autistics and it allowed me to demand respect from others for the first time in my life. We finally discovered solid ground to stand on and in a new state, newly married and starting a brand new life, Jesse and I started dismantling our bad habits and learned a new way to love and accept each other.

I never thought I had anything I’d particularly like to say in terms of blogging but I’ve been given an incredible gift through the words of others and I feel the need to share my own experiences, painful and joyful alike, in an effort to repay that debt. Despite the wealth of information out there, there seems to be a gap. I sought positive stories of neurodiverse queer relationships, day-to-day narratives from both perspectives, anyone with relationship experiences that mirrored my own. Finally, Jesse and I are in a place where we feel we can fill that gap and that’s what we’ll try to do from here on out.