There are a lot of moving parts (and people) in my life lately. I’m not gone permanently, just taking an official break. This community is so important to me and rests in my heart always. I can’t wait to have the energy to re-emerge. ♥
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. ♥
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. ♥
- 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.
- Be happy. Have something you love waiting for you during a break. Favorite tv show, favorite song, favorite cat, etc.
- Stretch. You might be really tense without even noticing. Stretch those muscles!
- Watch this video of a sloth taking a bath.
- Stim. You won’t need reminded but how about a reminder that stimming is fantastic?
- Drink water. Have you had enough water today? Has anyone? Ever? Probably not.
- 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.
- Take a selfie. You look really good today.
- Listen to the rain. It’s so soothing…and sleepy. (9.5 Take a nap?)
- Eat regularly. Need some low spoons food?
p.s. the link preview picture is not my dog. Unfortunately. 😦
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 $peaks. (rhyming! fun!)
- There’s no autistic people in their leadership.
- They are anti-vaccine. (Bonus! Anti-vax is bullshit)
- Only FOUR PERCENT of the money donated to A$ goes to autistic people (most of their $$$$ goes toward eliminating autistic people).
- They perpetuate dangerous views of autistic people.
- They think we are burdens and tragedies.
- They sympathize with our murderers.
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.
p.s. The link preview picture is of my cat, Spencer. He always looks as done as I feel. ♥
There are plenty of posts on boycotting Autism Speaks. One more wouldn’t hurt.
[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]
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.
Sized for Facebook:
Sized for Twitter:
Autistic and proud, struggling, flapping, present, speaking, happy, quiet.
Respect the spectrum.
April is Autism Acceptance Month.
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.
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
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. ♥
The hardest part of my trip back to Kentucky for Christmas was not the airport or constantly changing plans or the obliteration of my routines (not that they were exactly easy), it was telling my family about my needs in a way I had never done when I lived there.
I used to go along with whatever was happening and just deal with the consequences. Sometimes I sat in the corner with headphones on the entire time, sometimes I ran from people so I could meltdown in private and on occasion, I enjoyed the company of my family. This year, Jesse and I explained spoons and downtime and stimming and how my needs have not changed in the last two years but how we deal with them has.
Everyone was absolutely wonderful about it. Rooms were made off limits for me when the house was packed, people were told to be quiet or leave when I became overwhelmed, they were extra careful and communicative when driving me places, restaurants were chosen with noise level and space in mind and no one touched me without asking. Not a single person made me feel guilty or acted like it was anything out of the ordinary. Their unconditional acceptance of my differences was the same as it’s always been, only made more obvious by bringing it out into the open.
Here’s the hard part: their acceptance surpassed my own. I felt crushed under the guilt of my selfishness the entire trip. I felt like I was dictating every moment of our holiday and I still can’t clearly recall if that’s an exaggeration or not. I can’t decide if this feeling is worse than not being accommodated in the first place. It might not be healthy to prefer being ignored to being accepted but I’m so tired of the self-loathing that pops up when people are good to me. It seems excessively unfair.
People have not always been good to me. I didn’t grow up with the family I have now, I married into it. Except for my mother, who has gone to great lengths to learn about me as an adult and improve the way we communicate, I don’t speak to anyone from my past. Even though things have changed, I have 20+ years of hurtful words and actions ingrained into my psyche. It takes time to undo that kind of damage. It takes exposure to acceptance and integration of support into every day life. I know that and sometimes I even believe it.
I used to think that someday I would get completely better, cured of the internalized ableism and effects of trauma that plague me with doubt and self-loathing. I would be a Well-adjusted Autistic Adult™, confident and unapologetic in my need for support. I don’t think that’s true anymore. I think I’m probably always going to deal with these feelings in some instances. It’s going to get easier, though. It already has.
I came home from our holiday and took care of myself. I slept for 12 hours at a time, didn’t leave the apartment for 4 days, binge watched The Mysteries of Laura on Netflix (it’s so good, you should watch it) and did not tackle my very long post vacation to-do list. I still had twinges of guilt while my unpacked suitcases looked at me from their spot in the dusty corner of my bedroom but I ignored it and took my dinner of peanut butter and bananas back to the couch. ♥
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.