What We’ve Lost, or, What We Know (Autistic Pride Day 2020)

I. The Immutable Fire of Grief

We have always grown out of what others tried to define us as. We started writing our own stories more prominently in the 1990s. We always wanted our own narratives. A lot of that is lost: old listservs and expired blog domain names, and who got left out in the prominent record of our “short” history, and who was included. Sometimes we try to recollect it.

Other things we lost: stories, people, community members. Some recently, some to obscurity, some over a decade ago, many to direct and indirect violence. And so those of us who live have always been the immutable fire of grief, leaping in flames. But before the renewal of the forest fireweed, there’s us, floating down through the air as smoked out ash.

Whether it is the police targeting a Black autistic person or the school to prison pipeline, trans autistic people being denied gender affirming care, being abused at home or a victim of filicide, subjected to compliance-training behavior therapies like ABA, workplace discrimination, or a combination… Or maybe it’s something else, and – and – and…

II. Ash and Candles in the Dark

There is pain and beauty and darkness. I’ve said it before, and I’ll say it again:

I see beauty and pain and candles lit against the darkness as we mourn and try in vain to collect our emotions. I see the darkness pressing against the community… [but] I watch a community in pain sometimes come together in the most poignant of ways.

Ash slips through cracks and fingers so easily. Many of the people we’ve lost we’ll never know. In the cases of the people we did know, sometimes it still wasn’t enough. Though I burned myself out at least two years ago and haven’t really been as present since, I am not suggesting we give up. Rather, acknowledging the trauma weaves a stronger community.

Pride and acceptance aren’t the only pillars of the autistic and neurodiversity community – or any community. There’s the history and what came before, to remember, honor where proper, and learn from. There’s the coping and community support. There’s the fighting with steep odds and the resting, and the myriad contributions to a community’s culture.

There’s also being alive, woven into the community tapestry by sheer existence. Because what is a community without its people?

Teach Autistic Youth They Have a Community

Other Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think knowing a diagnosis is a powerful tool in many ways, but it is not the only obligation of parents. I knew immediately about my ADHD diagnosis at age 7 or 8, then later my autism diagnosis at 14. I didn’t know I was disabled until college.

Many adults in my life told me I had ADHD. They just said it made me hyper, and gave me attention issues… then kept saying the same positive things about me: Smart. Unique. Creative. Reads a lot. When I got my autism diagnosis, they started saying: Smart. Reads a lot. Very high-functioning. Uniquely aware [of the diagnosis]. When they spoke of things I struggled with – like attention issues, staying organized, being polite, and making the right words happen – it was not to acknowledge disability, only deficit. It was not to work with me or discuss ways other people could adapt. I needed to adapt to the world, except for some accommodations.

They tried to quantify my life into skills and deficits. They told me I was more aware than others – like those in the special education classrooms – despite those kids being the most accepting of me when I hung out in their classrooms. I learned my deficits outweighed other qualities. I learned that there was no one else at all like me. I learned that I was alone. Not knowing what the diagnosis meant affected the ability to find friends, worsened depressive episodes and anxiety, and increased social isolation.

In my younger years, I had been able to get by through extensive book reading, writing fiction, and other solo activities. As I aged, my differences became more apparent. I wondered why I couldn’t be like everyone else or have friends. I had about one close friend in my high school years – an online one who meant a great deal to me. We couldn’t meet up in person, which I wanted desperately.  I wouldn’t know anything else but isolation until college – and making two autistic friends, along with a couple of others who accepted me.

The diagnosis given to me answered the question why for why I worked the way I did. No one helped me understand how it made my brain and body work. No one explained that it is a disability with ups and downs and effects from society. No one aided me in accessing community and culture. The diagnosis did not simply hand me all the tools I needed for life, in of itself. Community, once I found it, did.

Much of the autistic community may exist online, but it is vital. It will give youth access to writings by other autistic people. It gives them access to people who have written or know about coping tools, self-advocacy, and policy issues. It gives autistic youth an autistic culture. Parents (and other adults interacting with autistic youth), please explain autism to autistic youth. Please tell them more than a diagnosis. Please help them find other autistic people. If you don’t know the answers to their questions about autism, ask autistic people. It will change their world at least as much as telling them the diagnosis.

Part Two (Upcoming): Tips and Ways to Teach about Community

#AutisticPrideDay 2016

I am not sure how much I have to say; this is the third Autistic Pride Day I’ve written something for. It feels as though I have exhausted and extolled the mantras of pride, taking up space, having loud hands, and of having a neurodiversity community that will have each other’s backs as surely as we carry the weight of the dead, of injustice, and of trauma that can result in emotional whiplash among us. I will try anyway.

There is something to be said about the value of connection. There is something to be said about a group of autistic adults and self-advocates and activists whose previous generations are dead and lost, in institutions or just dead. There is something to be said about a group of autistic adults and self-advocates and activists whose future generations we try to teach neurodiversity and self-acceptance and self-advocacy to.

There is something to to be said about the pride we carry, that we carry as surely as we bear the pain of discrimination and the pain of things done to us. We carry it like the candles we hold up to the dusky, darkening sky on our Days of Mourning, lighting them together to build a torch. The torch has the power to light the way, or set fire to what we’ve built already.

The pride we carry can change things and people everywhere. The Lancet, a major medical journal, published an article on Autistic Pride. The Republic of Malta wants to build an inclusive rights agenda for autistic adults. California is shutting down its institutions for people with developmental disabilities. Maryland voted to end subminium wage for disabled people. All the Weight of our Dreams, the anthology by autistic people of color, has a webpage and is forthcoming. We had two Democratic candidates for president notice people with disabilities as a voting bloc and start supporting disability rights legislation. The FDA is taking comments on a proposed ban on contingent electric shock devices used on disabled students. There is a battle for the future of autism advocacy – something that previously would have been unheard of. More and more we’re creeping into mainstream publications like the Washington Post and other places.

Many of us are traumatized and a lot of us are scared. Many of us are in pain and many of us have doubts. Many of us have negative self-image and many of us are not sure how to move in this world. None of that has to preclude pride. To my autistic brethren who are there and talking about pride: remember that the torch we carry has the power to light the way, or set fire to what we’ve built already. And to my autistic brethren who don’t yet know how to be proud: I will wait for you, always.


On Autism Acceptance Month

We put so much into trying to reclaim “Autism Awareness Month,” our reactions informed by trauma, abuse, neglect, and pain. It is the month where many of us are surrounded by blue lights and puzzle pieces. We turn to seeking those out and commenting furiously, fueled by pain and anger – with mixed results. We write long blog posts and hold acceptance events trying to counter the flood of “awareness.”

We have made some progress, such as Apple calling it “autism acceptance” with no mention of “awareness.” This is important that people saw it called acceptance, though many don’t have access to iPads, which is concerning and needs to be addressed. We’re getting the word “acceptance” more mainstream.
But what if we put some of the same energy into claiming our other Autistic holidays that we made ourselves? Autistic culture can blossom further if we allow our holidays to grow, to become cultural phenomena that is talked about outside autistic circles:
I do not oppose working for acceptance during April, obviously! I am of course against LIUB and the like. But what if we put some of that April energy into being for things relating to autistic culture and pride, instead of mostly focusing on a month where it’s a constant being against things like Autism Speaks and “awareness,” which can be exhausting?

What do you think?

Autistics Speaking Day: Building Hope

Autistics Speaking Day: Building Hope: Kit Mead

My first experience with neurodiversity was something built gradually from the ground up. It built itself around social connections first, and someone driving me to a public lecture on autism and neurodiversity. Gradually reaching out and pulling together a community. It was the beginnings of what would be the disability student group on campus and my ASAN chapter.

It was a revelation, to say the least. I learned about an entire culture.I myself fell into it hard and fast but the community took a while to build locally.

I am proud of what everyone involved in all that has accomplished.


The Internet has always been my second home. I started an “autism blog” in 2013. I had been on Tumblr before, but not knowing about neurodiversity and mostly reblogging things like cats.

Autistics have a lot of pain to work through, which I have seen flashing up all around me. We have a lot of trauma and ours is the history of a group maltreated. Having pain to work through is fine.

We do have a community, diverse among its interests and identities. We have more people discovering how their brains work every day. It is important to cultivate a disability identity in people carefully and with kindness. Autistics have a lot of pain to work through.


Autism is a neurotype, not a political belief system or other set of beliefs. We share a neurotype. We are diverse. We have pain. We have different opinions. I’ve seen us come together on a lot of issues and part on others, recent though my addition to the neurodiversity movement is.


The reason I joined neurodiversity was because someone found me and realized that I could contribute something. They helped me learn, slowly, to create an identity out of disability. I read everything I could get my hands on. I came into neurodiversity when the community was speaking out even louder than ever against groups like Autism Speaks. I embraced it.

I was fortunate. I managed to pick up what words to use and had some talent with writing that lent itself well to blogging. I had someone patient to teach me. I joined neurodiversity because someone helped bring me into it. I have hopes for this community. In some areas, I fear for it. The splits seem wide in many areas.


There are many types of advocacy and activism.

For instance: resistance can be self-advocacy. Self-advocacy can be resistance.

If you write just one blog post, you have contributed. If you’re not on the front lines and doing spitfire activism, and are quieter in the background, you have contributed.

Some people would argue that “quiet activists” do no good, but I disagree.

We have room for all kinds of activists and advocates in this community. Some are newer, and perhaps we could learn to handle each other more gently.

Autistic Pride and What you Need to Know (Autistics Speaking Day 2014)

Autistics Speaking

Our methods of communication may not be what you are accustomed to. Sometimes we use assistive technology or just flapping intermingled with words to get the point across. But we all have things to say. Listen.


We can be proud and often are. We are proud of our neurodivergent brains. And have you ever seen a room of Autistic people flapplauding happily? Have you ever seen the joy we feel when stimming, which isn’t just a negative response? Or just the pride in our ways of thinking and doing.

Being Autistic can be hard. Being Autistic can lead to more challenges in the world, but so many of those are based in a society which values spoken/verbal communication and an education system which views it as a compilation of deficits.

More importantly, autism is not something you can change about a person, or something you can cure; it is part of our neurology, hardwired into our brains, so why not be proud?

Also, have you ever seen someone’s face light up when they get on their favorite subject? The way they communicate and move and they are the expert and they want to share? It’s beautiful. I can tell you everything about cats, I can explain to you my dragons on Flight Rising, or describe every aspect of eugenic history:

How despicable I find eugenics and eugenicists by reciting you eugenics books in my sleep (almost), name top eugenicists, describe the way they described people, tell you what state passed the first sterilization law and when, who first came up with eugenics in the U.K. and that he was a cousin of Charles Darwin, inform you of how it made its way to Nazi Germany and that American eugenicist Harry Laughlin was later honored by Heidelberg University and he accepted it with pride.

Nightmares: Open Your Eyes to the Things that Happen

People have nightmares all the time. Being locked up in rooms, not knowing how to get out or when they ever will. Violent nightmares where they’re at the hands of someone who wants to do them harm. A lot of us live these nightmares in seclusion rooms. We get punished for flapping or making a noise or dropping a pencil or moving in the wrong way or if we argue with someone we get put in a room, locked in. These things happen where we’re supposed to be safe, places like schools, places where we’re supposed to be able to get an education.

Some of us are afraid, not so much from random strangers on the street but from the people who claim to love us. Some of us are the victims of violence and abuse that’s either called self-defense or therapy, like Issy Stapleton, whose mother called her violent and tried to kill her.Some of us don’t make it out alive, like Alex Spourdalakis, drugged and stabbed to death. These things happen when we’re supposed to be safe, places like our homes, places where we’re supposed to be loved and supported.

Most people can wake up from nightmares, but some of us can’t. We hold a vigil every year for the victims of violence. We unite to try and put an end to these things.

A Guidebook for the Non-Autistic: Things You Need to Recognize

  • Presumption of competence, believing in our ability to learn and understand, will bring us farther than any abusive therapies.
  • We are marginalized, but we’re still here and we will not be quiet; listen to us about things that concern us.
  • Behavior is communication; do not assume behaviors have no reasons behind them, and do your best to understand.
  • The same goes for watching us in public; we may look weird and different to you, but we have reasons and should not be shunned.
  • Representation in the media is not accurate.
  • We can provide valuable information on our disability and autism, and you should listen.
  • The value of our lives are not less regardless of the level of support we need. We have the same rights to life, love, education, jobs, and living conditions as anyone else.
  • Listen.

Maybe, in Poetry… Reflections on My Autistic Pride Poetry

TW: Abuse, murder, electric shock mention, links to things on “quiet hands”

I successfully read my poems, “Writing out Infinity: Autistic Pride” and (tw: ableism, violence, murder mentions) “Power Structures” at the 100 Thousand Poets for Change event on Saturday, September 27.

 I received an email later telling me that my poems had touched their heart. It made the fear of standing up in front of people with that microphone, staring at the papers in my hands, trying to put conviction in my voice because I am the authority standing up there on the stage and I know being Autistic is not shameful and I know all the things that have been done to us, worth it. 

I wasn’t sure they would understand what I meant by neurodiversity or by infinity, or or the description of stims. I wasn’t sure people would understand what I meant by people being afraid to move their hands, or people being afraid to be Autistic in a world that sympathizes with our abusers and murderers, and the innumerable counts of abuse done to us through electric shock and aversive therapies and forced normalization and telling people they can’t move their hands and they cut our vocal cords because we scream too much. 

Maybe, in poetry, the graphic or specific details don’t need to always be there. Maybe, in poetry, the conviction with which you say it will tell them it’s true, will tell them they should look into it, will tell them to presume competence and believe me and tell them that we are not suffering burdens 

–and that we can love ourselves just as much as any non-disabled person.