The Art of Quiet Acceptance

For Autism Acceptance Day/Month, we often think of acceptance in terms of how the rest of the world sees us. As we should, that’s incredibly important. But I find myself turning inward instead and reflecting on my own path to acceptance.

When I first became aware of, and later active in, the autistic community several years ago I felt like I had embarked on a revolution. And I suppose in a way, that’s exactly what it was. I fought hard to accept the things about myself I had spent over 20 years trying to smother. It was exciting, exhilarating and empowering, and often still is. What I didn’t realize was how exhausting this battle could become over time.

It wasn’t a losing battle, I loved myself more each day, but it was tiring nonetheless. That’s just the nature of things, I suppose. Energy expended is energy lost. But I found myself in some kind of uncomfortable limbo. I was no longer unaware of my own self-reproach and not yet subconsciously comfortable in my identity, no matter what I understood intellectually. I didn’t spend too much time thinking about how my feelings would change over time. When it comes to emotions, I’m much better at reflection than prediction. But there are noticeable changes when I look back at how I felt in years past, especially around April.

The negative self-talk, a product of internalized ableism, has receded— to my immense relief. It still pops up, especially if I have a meltdown, but day-to-day that nasty little voice tends to remain silent. I find myself stimming in public without admonishing myself about how odd I look. I don’t look odd when I stim. I look autistic and that’s quite alright, isn’t it? I like looking autistic. It’s who I am. And I like seeing other visibly neurodiverse folks out in the wild, it makes me feel happy and not alone. Why shouldn’t I grant myself the same acceptance I have for others?

I don’t ignore and push my limits anymore. Every time I ran out of spoons, even though I could and would usually take time to retreat, I still had an internal debate about the validity of my needs. For the past few years I’ve demanded acceptance of my limitations from the people close to me but I still couldn’t get my brain to follow those same rules. I can’t pinpoint when the shift in thinking became noticeable but I know it happened gradually. Maybe my brain just finally took the hint.

There are other little things I’ve noticed upon reflection. I don’t feel self-conscious when I go on and on and on about my special interest. After all, they’re very interesting. I’ve found myself being more forthcoming about my needs with people outside of my close family and friends and I really, truly understand that they are needs and ignoring them won’t help me or anybody else. Mostly, I find myself just feeling genuinely happy about who I am. That’s new.

This is where I am this year. I’ve never regretted being on this journey of self-acceptance, even when I was tired, but I’m certainly glad I’ve evolved a little bit. Maybe you’re here with me or at the start or at some place on the path that is unknown to me. Wherever you are, I hope you know you’re not alone and that in the exploration of self and the journey to acceptance, there is no loss—only gain.

I can only hope that this same journey is reflected societally and slowly but surely we will experience fully realized equality. We deserve absolutely nothing less, from ourselves and from anyone else.

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. ♥

A love letter to the autistic community

If you can fight your way past the ableism of a Google search, the massive online presence of Autism Speaks and a sea of neurotypical narratives, you can find the #ActuallyAutistic community. We live on the back pages of search results and within designated hashtags, marginally safe from our most vocal critics. It is in these spaces that we share our lives with each other. It is in these spaces that we seek and give support. It is in these spaces that we rest; weary from a world that isn’t made for us.

At all times, but especially during Autism Acceptance Month, we spread out online into discussions being held about us, without us, in an effort to educate and change the narrative—an ongoing campaign with varying rates of success. On good days, we share our conversations and observations, hopeful that our voices are being heard. On the hardest days, we trudge back to the only people who can truly understand our experiences and share the weight of our collective responsibility.

Like many autistics, I’ve long felt a sense of otherness. The way I view the world, my body language and speaking patterns, the challenges of sensory processing, these things are not represented in any other community I belong to. Isolation from non-autistic spaces, oppression and trauma—this is our shared history and it cultivates a deep sense of acceptance and respect for one another. Autistic is not our only identity; we are wildly diverse and an acknowledgement of that is essential to understanding the community.

Unlike other communities, I take mine with me wherever I go. On the bus, in a store, on my lunch break at work—I’m joining #Autchat or reading a new blog post from one of the many incredibly talented autistic bloggers. There is no central community space or official numbers; we overlap across platforms and websites.

Much like communities that people experience solely offline, I run into people I know in unexpected places. A friend from Twitter may pop up in a Facebook group or in an Instagram hashtag and I assume my feelings of surprise and happiness are akin to running into a friend at the grocery store. (This doesn’t happen to me because I generally don’t go to grocery stores—they’re sensory hell.)

Our community may be shaped by advocacy, but by no means does that define us. We have humor and levity, religion and discourse, book clubs and support groups. We share hopes and dreams and accomplishments. We are vibrant, active and deeply affirming.

The autistic community isn’t perfect. Humans are too complex and different for any such thing to exist. We experience ableism, conflicting goals, and differences of opinion, on matters large and small. What we do have is an open source culture, dependent on it’s members’ ability to alter, collaborate and better our community experience. I love all of these strengths and flaws. No one can take this away from us, not even Autism Speaks and the rest of our false allies. Our acts of community are defiant in a society that devalues our existence but it doesn’t deter us. It doesn’t even slow us down.

When I first accepted my identity as autistic (which is not the same as diagnosis), and acknowledged the otherness that has defined my life, I turned to the Internet, where I had always communicated best. What I found was disheartening, the validation of my worst fears. I was inherently wrong somehow, and there could be no gratification in acceptance of self.

It was only after I kept digging, certain that someone somewhere knew what it was like to be me and not just what it was like to be around me, that I found the fringes of my community. Each new experience started to heal a wound deep inside of myself. The acceptance I found, a salve for hurt I had internalized for so long. This community saved me and it will continue to save others.

This is not a plea of understanding, this is not a persuasive argument for the value of our community and this is not a defense of autistic culture. This is a celebration, an acknowledgement and a moment of reflection. This is a love letter to the autistic community and all of the amazing people that belong to it. ♥

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. 😦

This is the last time I’m going to say this

I get asked to defend the stance of my community on a lot of issues. I’m sure a lot of us do and it’s a difficult place to be. On one hand, I’m tired of it. On the other, the person asking may double-down on their views if I’m not forthcoming with some easily-digestible facts. I’ve seen it happen. So, I’m going to put this here for posterity. This is the last time I say it. (Okay, at least until April is over)

First up, I’m autistic. Overwhelmingly, the autistic community prefers identity-first language and we’ve said so. A lot. Autism is a part of my identity, my personality, my life. There is not a neurotypical person in here, lurking beneath the autism.

Some people do prefer person-first language in reference to themselves and the choice is always theirs and should be respected. Just respect the voices of our community and above all else, do not tell autistic people what they should and should not say. It’s condescending.

Second, here’s some receipts for Autism $peaks. (rhyming! fun!)

There’s so much information out there. There are bloggers and vloggers and activists and movements and organizations. We are speaking loudly in the face of this roaring lion trying to drown us out. And it’s working. But you have to challenge your views and assumptions. You have to question what you’ve already learned because things are changing, and they’re changing for the better in this community because we’re making it change. You have to go out there and educate yourself.

Please do not put the burden of proof on autistic people. We spend a lot of time patiently explaining why our lives have value and it is exhausting. And at no other time is it as tiring and invasive as in April. Give us a break. Google it.

Re-posted from a reply to a comment on a tumblr post of mine.

p.s. The link preview picture is of my cat, Spencer. He always looks as done as I feel. ♥

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]

Preparing for April pt. 2

I love this amazing, diverse community. There are so many different voices and experiences, held together by a thread of understanding and acceptance. We deserve the same consideration outside of our community. ♥

Share, link and include text description when possible.

Original: respect original

Sized for Facebook:
respect fb

Sized for Twitter:
respect twitter

Image reads:
Autistic and proud, struggling, flapping, present, speaking, happy, quiet.
Respect the spectrum.
April is Autism Acceptance Month.

Preparing for April

Leading into Autism Acceptance Month can be pretty exhausting. What kinds of people are we going to encounter this year? Are the anti-vaxxers going to be lashing out? How many will silence our voices? How many autistics will Autism Speaks ban from their social media sites? You just never know. My goal this month is to make as many graphics about acceptance and support for our community as possible because those damn puzzle pieces are lurking just around the corner.

First up: how to be an ally for Autism Acceptance Month. Feel free to post/share to Facebook, Twitter, Tumblr, wherever, and include the text description when you can.

Allygraphic

Image reads:
April is Autism Acceptance Month!
5 ways to be a great ally:
#1 Listen to autistic people
#2 Listen to autistic people
#3 Listen to autistic people
#4 Listen to autistic people
#5 Listen to autistic people

 

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. ♥