One of the largest autism journals has opted to remove the puzzle piece from their cover.
This editorial is really good. It’s been written with great care and respect and openness to a future where autistic and non-autistic people collaborate equally in the future, and #ownvoices will be heard.
From the United Nations Office of the High Commissioner for Human Rights:
“The autism spectrum should be understood from a broader perspective, including in research. We call for caution about enthusiastic attempts to find the causes of autism and ways to ‘cure’ autism through sophisticated but not necessarily ethical research. Autism as a condition is a critical challenge for modern health systems, in which we
need to ensure that the practice and science of medicine is never again
used to cause the suffering of people.
More investment is needed
in services and research into removing societal barriers and
misconceptions about autism. Autistic persons should be recognized as
the main experts on autism and on their own needs, and funding should be
allocated to peer-support projects run by and for autistic persons.”
I think I would like this better if the ‘group picture’ contained the first two figures. Yes, there are autism stereotypes, but the implication by their exclusion is that these two do not exist in our multifaceted community, when the reality is, they are just as much a part of us as any other. So yes, portray diversely, but don’t leave those autistics who fit the stereotypes out in the cold. I’ve seen this kind of gatekeeping in queer communities, too, often to exclude people who fit the stereotypes about queer people too closely. The moment we tell people they’re letting us down just for existing and living as their true selves, the more we define a rigid idea as to what it means to be autistic, and become hypocrites. We should never make an autistic feel they have to change their movements, their dress, their special interests, stimming behaviours, or speech because they are overrepresented. Don’t make that autistic person feel shame because of who they are. That’s what neurotypicals do to us every day.
So, for the autistics who wear headphones, who love trains, who are ‘little professors’ with encyclopaedic knowledge of baseball stats or vacuum cleaners or planes, who are maths prodigies or synaethetes or have eidetic memories or are savants – YOU ARE WELCOME. YOU BELONG. YOU ARE JUST AS AUTISTIC AS ANY OF US. WE LOVE YOU.
[Image is a poster explaining briefly the origin and meaning of green, yellow, and red interaction signal badges, referred to above as Color Communication Badges.]
if youre not autistic or suffer from an actual disorder, dont use these. its not cute.
er… you know a lot of autistic people go to conventions, right? And people with social anxiety disorders and panic disorders? Shit if I could get away with using this at work I would.
I would like to introduce myself. I refer to myself as Sam Thomas, though my legal name and how a lot of people know me is Matthew. I am officially diagnosed autistic.
If you have any question as to the truth of this, I would like to direct your attention to this YouTube video that ASAN produced promoting the above-mentioned conference. I appear as the first person in the video and you can find more images of my face on my blog.
At this conference, not only did we use these communication badges pictured above, but we actually had the opportunity to meet Jim Sinclair, the inventor of these badges.
During the part of the conference in which Jim Sinclair gave us a history of Autism Network International (ANI)—which they were a co-founder of—they talked to us about the establishment of this particular piece of assistive technology. Basically, it was a simple idea that seemed to fit a need and quickly became very popular among many autistic spaces for it’s practicality and ease of use.
The conference it originated from is called Autreat and is held annually by ANI. This is an autism conference that accepts Autistics and Cousins (ACs)—that is, anyone diagnosed or otherwise self-identifying with any disorder autistic or similar that may share a number of autistic traits.
There was a need. The need was met. This is how we can safely assume most technology either emerges or becomes popular.
We also talked about something called Universal Design and the Curb-Cutter Effect. The Curb-Cutter Effect is when something to fit a specific need is found to create convenience in a broader area than intended. Curb cuts allowing for wheelchair accessibility to sidewalks proved to also be convenient to anyone who may have trouble with steps or even simply a mother with a baby stroller or maybe a child with a wagon. This is a desirable outcome with disability rights advocacy as creating convenience for non-disabled people often makes the assistive technology easier to advocate for.
In this sense, these colored communication badges could serve that Curb-Cutter effect. Not only would this be perfectly acceptable for non-disabled people to use for convenience, but would also help to increase their effectiveness and convenience for those of us who need them. Here are a few examples:
Increased popularity makes the colored communication badges more easily recognizable to the general public, making them as effective outside the above-mentioned autism conferences as inside.
Increase in demand would create increase in supply and availability, likely making these available to pretty much anyone and even being included with, say, the name tags you are required to wear at most cons.
In addition to these helping people recognize the communication state of the wearer, the wearer will be able to recognize whom they can feel more comfortable to approach.
Increased popularity would make these badges more acceptable for public use and less alienating to those who would wear them frequently.
This is not something that we are completely incapable of surviving without; this is something that was convenient and made our lives a lot easier. If that can be easily shared with the general public, then what purpose does it serve not to share it?
Thank you for reading.
I’d just like to add since it wasn’t mentioned by autieblesam, there’s a reason for the symbols as well as the colours – this is so that they’re accessible for people with colourblindness. As autieblesam said, like kerb cuts, this system can only HELP society if it’s more widely implemented, but DO IT RIGHT. Keep both the colours and the symbols, and keep them obvious – brightly coloured badges, lanyards or bracelets that are easy to read from a distance. People are going to screw up and accidentally address people who don’t want to be occasionally, and that’s unavoidable, but you reduce the chance of that happening drastically if you remember that the purpose of these is communication and don’t stylise, downsize or modify them to the point that they’re ineffective.
This is a social story, what many autistics in the 80s were “trained” to think to appear neurotypical at all costs
Some background information you need to know:
Social stories are still used today but back in the 80s it was like social stories on steroids. They were drilled into our heads, act “normal” at all costs. I know my parents were particularly keen on this. I went from special Education classes where they knew I was autistic and visually impaired, when we moved my parents took advantage of that to mainstream me and not pass my health information along to the new school. Social stories became all that more important. Must. Act. Normal. At. All. Costs.
Being autistic was treated like it was something to be ashamed of and that is a thought pattern that is hard to break to this day.
Growing up in the 80s and 90s with autism was very much the “quiet hands movement”, (https://juststimming.wordpress.com/2011/10/05/quiet-hands/ good article!) which is to say we were silenced and punished if we stimmed. (For allistic people The term “stimming” is short for self-stimulatory behavior and is sometimes also called “stereotypic” behavior. In a person with autism, stimming usually refers to specific movements that include hand- flapping, rocking, spinning, pen clicking, desk tapping, beatboxing or repetition of words and phrases amongst others.“)
Stimming can mean we are happy or stressed or angry or any other array of emotions. Stimming is not a universal trait and no too autistic people stim the same.
It was also the land of Applied Behaviour Analysis (refered to as ABA for the duration of this post) where any stimming or “undesired behaviours” were squashed out of you as quickly as possible and replaced with “desired behaviours”.
Every night before bed, we would go through the story of how to behave like a neurotypical person. Social stories began before I could read, at first they were pictures. Pictures of faces and facial expressions I couldn’t see or understand.
Location: lunchroom table, 4 of your friends or at least people who are semi-nice to you and a new girl. You know you should follow the steps to make the new kid not think you’re “weird”.
Get your lunch, resist slapping your hands down the rows of cubbies.
Sit down
Don’t rock
Don’t hum or tap your fingers
Get out your lunch
Don’t rock
Look at the new girl, in the eyes even though it feels bad
Smile
Don’t rock
Don’t pull your sandwich apart, normal people take bites
Don’t rock
Join in the conversation, even though they are all talking at once and bouncing between different subjects and when you finally think of something to say, it was 3 subjects ago and you feel dumb
Don’t squint because the overhead lights feel like you are standing too close to the sun.
Don’t rock
Also, don’t cover your ears because the lights buzz and the clock is loud (normal people don’t hear it) and everyone is talking at once and it’s loud and people’s lunch wrappers are crinkling.
Don’t wrinkle your nose at all the smells of everyone’s lunches mixed together with the smell of pinesol cleaner
Don’t rock
Don’t talk in big words you just learned, that isn’t normal, they don’t like that
Don’t touch your clothes, quiet hands, sit on them. Don’t touch the table or walls or other people.
Don’t look relieved that lunch is over.
Go to the library instead of outside. It’s safe there because there is no one but the librarian and she is nice and doesn’t talk or make me talk.
So that is a social story, that is what runs through my head at every interaction with another person. The situation changes but it runs through my head. Still.
It’s exhausting, continuous stream of orders. But I’ve been trained like a dog that was whacked with a newspaper when it did something bad that acting “normal” is paramount to anything else.
And it is virtually impossible to crack, let alone break.
We used to have a term in the autistic community, we called it ‘cousins’.
It started when Xenia Grant was talking to a guy who had hydrocephalus and had a lot in common with autistic people, but was not autistic. She took a look at him and happily exclaimed, “Cousin!”
(I like to keep track of who coined terms. It can be meaningful. Xenia is the friendliest person I’ve ever met, autistic or nonautistic. That’s the spirit that ‘cousin’ started in.)
Back when NT meant a nonautistic person, another abbreviation cropped, up, AC. AC meant “Autistics and Cousins” and covered autistic people and… cousins. So you’d talk about “ACs and NTs”. But who were cousins?
Cousins were people with a neurological condition other than autism, but it gave them important things in common with autistic people. Especially sensory processing, cognitive, and social traits in common with us.
Cousinhood wasn’t something that was based on a condition. It was based on how that condition worked for a particular person. So while sometimes we’d talk about ‘cousin conditions’, there was no condition where everyone with it was a cousin.
But some common cousin conditions included: Tourette’s, hydrocephalus, OCD, schizophrenia, and AD(H)D. Just as some examples. Not everyone with those conditions was a cousin, but lots of cousins had those conditions or related ones.
The cool thing about cousin was that it dealt with the ambiguity of life. It made it so that it wasn’t just ‘us and them’. There was a broad hazy area around autism where people could be considered in many important ways ‘like us’ without being autistic.
Two people on tumblr that my brain automatically classifies as cousins are karalianne and lichgem. (That’s assuming they’re not unknowingly autistic, of course. Some people think of themselves as cousins but turn out to actually be autistic.) I don’t see them as outside of the circle I draw around ‘autism’ for social purposes, because I draw that circle at the ‘cousin’ level rather than the ‘autism’ level.
I kind of wish that most identities had this ‘cousin’ thing going, because it would resolve a lot of boundaries that people want to be strict and are not. It deals with people who are a lot like a certain type of person, without exactly being that type of person. And it does so in a really friendly and welcoming way.
I know that Tourette’s has a similar but not quite the same idea, called “Tourette’s Plus”. Where the “Plus” conditions are conditions that people with Tourette’s often have in addition, like autism or OCD. Not quite the same idea, but similar.
Eventually people started deciding that the problem with ‘cousin’ was that it made ‘autistic’ the center of the neurodiverse landscape, and that this wasn’t fair. And maybe it wasn’t fair.
But still, I miss the days where you could say “AC” or “Cousin” and people would know what you meant, immediately. And where cousins were considered an actual inside part of the autistic community, not just “allies”. I know there are parts of the autistic community where all of this is still the case. But not nearly as many as there used to be.
So I’m throwing the idea out there just in case anyone likes it as much as I do. It’s not my idea, I didn’t think it up, it existed long before I even knew there was an autistic community (and I go pretty far back compared to a lot of people these days). But I think it’s a useful idea, in some contexts, as long as you do keep in mind that autistic people aren’t the center of neurodiversity.
(But honestly I think if all neurodiverse people used the ‘cousin’ idea in their own communities, then it wouldn’t be about autism-at-the-center anymore it would just be a useful idea for people who are very similar to you in important ways without being quite the same.)
Anyway… Karalianne was talking about how she feels sometimes like she can’t even talk about certain things without qualifying them a lot, because she’s not autistic, and she’s afraid of encroaching. And I remember a time when she was not considered encroaching because everyone knew she was a cousin and that was her place in the community and nobody (that I know of) ever questioned it back then. And it upsets me that this is not the case anymore. Because she totally is one of the first people to spring to mind when I think ‘cousin’.
And I wish that Xenia’s exuberant friendliness would somehow infect the term ‘cousin’ once again, because it needs that push.
Oh, wow. I really, really, really like this. In general, I mean, as a welcoming way to think about people who are on the “margins” of all kinds of marginalized communities.
The social and emotional distinctions between calling someone a “cousin” vs “ally” feel really salient to me. And certainly there are people who are allies more than they are cousins. But there are definitely other people in my life who feel much more like cousins than allies. Particularly when we think about this in terms of LGBTQIA communities, and the fact that people who start out seeing themselves as “allies” in those communities often end up with far blurrier or queerer senses of sexual selfhood than they came in with.
And thinking of these folks – that hetero friend who’s always getting read as queer, or that cis-identified queer whose experience of gender is unusually transgressive, etc – as “cousins” seems very much in keeping with the longstanding queer tradition of referring to each other as “family.”
I can see it making sense in many other spheres of my life as well. (I definitely feel like my particular brain wiring gives me some cousinly traits with some other neurodiverse folks, even though their brain condition and mine are not the same.) But queerness is the first thing that comes to mind for me, since it’s the community where I’m most familiar with the blurriness around and battles over identity boundaries.
Like. Like. Like.
I… always used cousin in that way?
By logic, if someone is a cousin to me, I am a cousin to them. We are each our own centre, yes, but none of us is more central, or more important than the others by virtue of our neurotype, diagnosis or pattern of symptoms/expression.
Cousins I recognised included people who were epileptic, bipolar, had movement disorders, cerebral palsy, were blind or deaf or used AAC for whatever reason, had traumatic brian injury, were synaesthetes, had sensory processing disorder, dyslexia, or auditory processing disorder. The label of cousin can be applied to anyone whose brain works differently and has a shared experience with autistic people because of this. Neurodiversity is a wonderful thing. Our family is vast, and is a circle. Like the round table, there is no head, no central figure higher than the others.
My friend told me a story he hadn’t told anyone for years. When he used to tell it years ago people would laugh and say, ‘Who’d believe that? How can that be true? That’s daft.’ So he didn’t tell it again for ages. But for some reason, last night, he knew it would be just the kind of story I would love.
When he was a kid, he said, they didn’t use the word autism, they just said ‘shy’, or ‘isn’t very good at being around strangers or lots of people.’ But that’s what he was, and is, and he doesn’t mind telling anyone. It’s just a matter of fact with him, and sometimes it makes him sound a little and act different, but that’s okay.
Anyway, when he was a kid it was the middle of the 1980s and they were still saying ‘shy’ or ‘withdrawn’ rather than ‘autistic’. He went to London with his mother to see a special screening of a new film he really loved. He must have won a competition or something, I think. Some of the details he can’t quite remember, but he thinks it must have been London they went to, and the film…! Well, the film is one of my all-time favourites, too. It’s a dark, mysterious fantasy movie. Every single frame is crammed with puppets and goblins. There are silly songs and a goblin king who wears clingy silver tights and who kidnaps a baby and this is what kickstarts the whole adventure.
It was ‘Labyrinth’, of course, and the star was David Bowie, and he was there to meet the children who had come to see this special screening.
‘I met David Bowie once,’ was the thing that my friend said, that caught my attention.
‘You did? When was this?’ I was amazed, and surprised, too, at the casual way he brought this revelation out. Almost anyone else I know would have told the tale a million times already.
He seemed surprised I would want to know, and he told me the whole thing, all out of order, and I eked the details out of him.
He told the story as if it was he’d been on an adventure back then, and he wasn’t quite allowed to tell the story. Like there was a pact, or a magic spell surrounding it. As if something profound and peculiar would occur if he broke the confidence.
It was thirty years ago and all us kids who’d loved Labyrinth then, and who still love it now, are all middle-aged. Saddest of all, the Goblin King is dead. Does the magic still exist?
I asked him what happened on his adventure.
‘I was withdrawn, more withdrawn than the other kids. We all got a signed poster. Because I was so shy, they put me in a separate room, to one side, and so I got to meet him alone. He’d heard I was shy and it was his idea. He spent thirty minutes with me.
‘He gave me this mask. This one. Look.
‘He said: ‘This is an invisible mask, you see?
‘He took it off his own face and looked around like he was scared and uncomfortable all of a sudden. He passed me his invisible mask. ‘Put it on,’ he told me. ‘It’s magic.’
‘And so I did.
‘Then he told me, ‘I always feel afraid, just the same as you. But I wear this mask every single day. And it doesn’t take the fear away, but it makes it feel a bit better. I feel brave enough then to face the whole world and all the people. And now you will, too.
‘I sat there in his magic mask, looking through the eyes at David Bowie and it was true, I did feel better.
‘Then I watched as he made another magic mask. He spun it out of thin air, out of nothing at all. He finished it and smiled and then he put it on. And he looked so relieved and pleased. He smiled at me.
‘’Now we’ve both got invisible masks. We can both see through them perfectly well and no one would know we’re even wearing them,’ he said.
‘So, I felt incredibly comfortable. It was the first time I felt safe in my whole life.
‘It was magic. He was a wizard. He was a goblin king, grinning at me.
‘I still keep the mask, of course. This is it, now. Look.’
I kept asking my friend questions, amazed by his story. I loved it and wanted all the details. How many other kids? Did they have puppets from the film there, as well? What was David Bowie wearing? I imagined him in his lilac suit from Live Aid. Or maybe he was dressed as the Goblin King in lacy ruffles and cobwebs and glitter.
What was the last thing he said to you, when you had to say goodbye?
‘David Bowie said, ‘I’m always afraid as well. But this is how you can feel brave in the world.’ And then it was over. I’ve never forgotten it. And years later I cried when I heard he had passed.’
My friend was surprised I was delighted by this tale.
‘The normal reaction is: that’s just a stupid story. Fancy believing in an invisible mask.’
[Image description: Four photos arranged in a square grid to be read from right to left, in the How People Shower meme format. The subject of all four photos is Miles, a light skinned autistic person with short brown hair and no shirt on standing inside of a shower.
The first photo shows Miles looking at the camera with a mild smiling expression and his fingers touched to his chin thoughtfully. The text says, “How do autistic people shower?”
The next photo shows Miles with wet hair and shrugging while looking at the camera with raised eyebrows and a slight frown. The text says, “Same as you neurotypicals.”
The third photo shows Miles with his face under the shower spray. His eyes are shut tight against the water. The text says, “First we get nice and wet…”
The last photo shows Miles with his wet hair pushed back from his face, holding a hardcover book and looking at the camera with a mischievous expression. There is a piece of paper with the word TRAINS written on it taped onto the cover of the book, so that it appears to read “The Little Book of TRAINS” The punchline text says, “Then we stay there all day and don’t socialise.”]
Image one has a pride flag and AWN logo, with black text on a gold block: “When we chose acceptance and love over fear, we teach our children that they can make this world a better place.” – Lei Wiley-Mydske, What Every Autistic Girl Wishes Her Parents Knew
Image two is the AWN logo with pride rainbow stripes.
Image three reads Happy Autistic Pride Day from Autism Women’s Network with pride stripes, and has the AWN logo.]
knitting in the dark 