Saturday, February 28, 2015

So Autism Daily Newscast told a falsehood. And doubled down.

In the screenshot, a lie is highlighted. The lie that neurodiversity proponents don't consider autism a disability.

We do. We just don't think that means we need fixed:



Highlighted is their lie, which says " Basically, the position of groups like the Autism Self-Advocacy Network (ASAN) states that autism is not a disability, but rather, a different way of being, and that it is not something that needs to be “cured.”"

That is not the position of ASAN or any neurodiversity activists I know.

So I tweeted them. Twice. And am not the only person who tweeted them. They claimed to not know what I was talking about & requested an email.

So I sent this email:

Ok so this is upsetting.

You lied when you said that neurodiversity activists say we aren't disabled. That is a position that has been SOUNDLY rejected, refuted, and is just flat out nope.

People who *do* say we believe that, exist. However, they are lying. And they are not neurodiversity activists.

It is unprofessional to talk about people without talking to them. Talking to autism parents, particularly the sort who are committing behaviors we protest, is not the same as talking to autistic people (did you not learn that? is talking to me the same as talking to my father? Cuz it's not. Similar experience, in our case, but not the same). Is talking to parents who adopted internationally the same as talking to a transracial adoptee? (no. it is not.) So why do you do it when you talk about us?

That is at best unprofessional and at most likely, disingenuous. This is seriously 3rd grade stuff.

Some simple rules:
1. Talking to parents isn't the same as talking to autistic people, unless they're autistic parents.
2. Trying to get information about what neurodiversity proponents mean by talking to people who reject the neurodiversity paradigm is...there isn't a word for how wrong it is. It's like asking the KKK about racial justice, ok??
3. When you choose to do these things anyway, you intentionally spread lies.
4. There's no excuse, as twitter is overflowing with neurodiversity people.

When will you publish & promote your correction of this willfully ignorant statement that spreads lies & makes it even harder for people like me to get services? Since apparently thinking you're ok, disability & all, means you don;t need help, bc of lies like yours and those of your sources?

Seriously. You owe us a correction & a big honking huge apology. Prove my low expectations for you wrong by actually delivering.

Kassiane
And I got this back, an email that wasn't supposed to go to me but instead to the emailer's higher up:

Shan -please deal with this - I am not even reading it tonight. I do not believe we said any such thing but maybe I missed it.  Perhaps she could quote the place we said it?

R

So, we have denial the first. Followed by her feels parade:

Kassiane,

I am so upset that I replied to you rather than Shan Ellis my editor. I am deeply offended by your comments.

Roberta Hill
Editor-in-Chief
Autism Daily Newscast

Here's the thing:

When you lie, you don't get to be offended about being called out. When you misrepresent a community, you don't get to be offended about being called out. You get to try to fix it. That is your one decent option.

This is what I said back:

You don't really have a right to be offended here, given that *you* lied about *my* community.

you said " Basically, the position of groups like the Autism Self-Advocacy Network (ASAN) states that autism is not a disability, but rather, a different way of being, and that it is not something that needs to be “cured.”"

And that is a LIE.

If you don't like being called out on lying, don't do it.You have no right, though, to pull the "so offended" card. You're the one who said to email you what I meant. I did. You're the one who ok'd a lie. This isn't about your feelings, this is about you misrepresenting the facts.
 
 I quoted for them, as requested. Then I get their other person being all condescending and a jerk and derailing in my inbox, because why not ignore the point? We can't actually address the point, that'd be silly:

Dear Kassiane

Thank you so much for your email. Unfortunately at this time we have no error to correct. 

I am on the Spectrum myself, and work as a journalist and editor. Our role on Autism Daily Newscast is to report the news without bias, and collect information to present as part of articles for the general reading public.

To say that we are lying is indeed a defamatory statement, to repeat this defamation on twitter, or any other social networking site, is in fact under Section 10 of the defamation act a civil actionable offence. I would rather not have to go the extreme of a court case. I hope you feel the same, but we will defend the honour of our articles and writers to the last.

We do take a broader view and interview people often and in the case of this article we talked to a collection of neurodiversity activists. 

We are not here to judge what other people believe, we simply report news. 

I would like to take a moment and remind you that some autistic people require advocates. The responsibility of advocacy for a child who is non verbal and (I despise this term) low functioning, falls to the next of kin or guardian who is usually the parent. I agree with you to some extent that if the individual can communicate there is no better way of understanding than to talk to the individual, not a third party. Unfortunately for some there is no other means to communicate.

I find your comparison with the KKK wholly unacceptable and in incredibly bad taste. We have presented for and against arguments from both sides of the fence and do not feel the need to justify why we have taken this stance as we are completely neutral.

"We intentionally spread lies". No my dear, we report news. Again we are completely neutral and present both sides of the story to an audience who enjoy reading us.

I completely understand your passion, if you would like to present an intelligently thought through article of your own representing your opinion I'd be happy to review it. I also understand your passion regarding the topic. But there are no mistakes, or errors or palpable "lies" in this article. 

I sincerely wish you all the luck in the world,

Shan Ellis

Thing is: it isn't defamation when you say someone is lying when they're actually lying.

It is a lie to say that ASAN's position is that autism isn't a disability.

ASAN is anti cure. That does not mean "autism is not a disability". Those are not synonymous.

And don't even with the condescension. Just don't. All that indicates to me is "don't even bother, just put it on the blog".

Because I actually have more faith in people than they deserve (or that I'll admit to) I sent one more email before starting this blog post. Maybe they just aren't understanding the words that I am saying!

No, you lied.

When you said neurodiversity proponenets say autism is not a disability, you are LYING.

That is inaccurate. Had you fixed it, it would have been an error. As you are doubling down, it's a lie. People fix errors. People double down on lies & try to justify them (do not lecture me on people with differing support needs. That is not relevant. That has nothing whatsoever to do with you spreading falsehoods about what neurodiveristy proponents believe. Many neurodiversity proponents *are* nonspeaking for pete's sake).

I see my low expectations are well founded.

And they sent me back more condescension, because why not?

Kassiane,

I see there is very little point in continuing this conversation as you fail to see we are a neutral organisation operating to bring news to the autism community (which I am wholly ensconced in being diagnosed with Aspergers).

We truly wish you the best, but at this time this article stands true to the way the reporter has composed it.

Glad to be of service at this time

This person seems to think the "autism community" and the "autistic community" are the same thing, rather than vaguely overlapping sets.

She also seems to think that ASAN is "autism self advocacy network". ASAN uses the identity first Autistic pretty much always.

And I agree, having this conversation is a waste of time. It has nothing to do with neutrality, it has to do with actual misrepresentations that turned into deliberate lies with the refusal to correct them.

So. Here's that pile of correspondence.

Monday, February 16, 2015

In defense of participation trophies

Currently it is popular in the media to come up with all sorts of reasons my generation (I'm a Millennial) are awful and bad and worthless and all sorts of other unflattering things. It has nothing to do with the economy, nothing to do with the systemic devaluation of labor, no sir.

Apparently it's because youth sports leagues shifted to giving everyone a trophy or medal. That is what is wrong with my generation. Fifty sent lumps of plastic, not an economic depression and job market saturation, are responsible for all that plagues my ilk.

I have written about my participation in athletics here before: specifically youth basketball, dance as an adult (which has a lot in common with gymnastics as far as how I experienced navigating it while autistic), about benefits of sport in general. It's no secret, I like being active. I feel that everyone should have a chance to be active, and I feel that participation awards are part of that.

Something that was happening during my youth: programs were becoming more integrated. More people with disabilities were participating in mainstream sports, particularly kids like me who were 'too typical' in whatever way for Special Olympics but not actually, you know, good. This is a good thing, and it didn't just benefit disabled kids. It also benefitted the able kids who are just not good athletes. Opening the option to everyone is a good thing.


I'm going to tell you a secret about kids who got the medals that said "participant" on them: we know we weren't the best that day. Some were not the best any day. A whole lot of us were there anyway because we loved what we were doing, and we wanted to get better. Hell, I knew a 6 year old--this was over a decade ago, she's an adult now--who refused to take her first place trophy because she didn't even meet the requirements of her level, but all her competition fell attempting to do so. To us, the medal was an acknowledgement that we put in effort.

You know who got really intense about the trophies? Parents. My mother, at least, had it in her head that if a child is not succeeding at a sport, that child should not do that sport. It doesn't matter if they are enjoying themselves. What matters is that they are bringing home awards; if you can't possibly be the best, she said, why participate at all? It's like "because it's fun" never occurred to her, or many of the adults hanging around.

Participation awards convinced my mother that we were 'good enough' to continue in the sports of our choosing. We were succeeding! Look at the trophy! My first year competing tumbling, I was mediocre. Had I not come home from the first meet with a trophy, my mother would have yanked me out. Five months later I got 8th at State & qualified to Nationals. Six weeks after that I got 6th at Nationals. Many years after that I got 3rd at Nationals. But without the participation trophies, which to my parents meant success, I wouldn't have had the chance to get the real benefits from my chosen sport.

Things like strength. Things like perseverance. Things like learning to lose and win gracefully. Things like goal setting. Things like learning to cope with a bad day. Building frustration tolerance skills. In my case, building enough physical dexterity to move relatively gracefully through space. Friendships. Knowing how to compete with someone without them being The Enemy. Focus. Comfort in front of an audience. Poise. Working through fear.

It wasn't about the trophies, and I suspect it wasn't for most of my generation in the various activities we pursued. I had a lot of trophies. Some were even pretty impressive. The only one I was sad to have to leave when I moved?

It was the one that my coaches nominated me for & coaches & judges voted on. It wasn't for being a great athlete (I was pretty good. I wasn't Athlete of the Year material). It was for...sportsmanship, setting a good example for younger competitors, perseverance, grace in both victory and defeat.

It was for the things that mattered.

But I never would have gotten to that place without participation trophies because of the old idea that sports are only for the most gifted of athletes. Most of the people I did sports with? We did it because we liked it. Not for the trophy or medal. And we knew which trophies and medals really stood for something.

Every once in a while someone still ableistly denounces participation trophies with "it's not the Special Olympics". That's bigoted as all get out. Athletes with developmental disabilities are frequently participating out of love for the sport, too (I do have criticisms of SO, namely that it's segregated & run by able people; the way they set up an environment where every participant can succeed is not a thing to be criticized). Special Olympians are athletes, just like anyone who regularly participates in a sport. Their developmental disabilities do not change that, and a gold medal won at a national SO competition matters just as much as one won at any national sporting event. So even if I can't convince you that participation awards are a good thing, at least stop saying this & come up with a real criticism.

My generation has inherited a big huge mess. It's not our participation trophies' fault. The world would be even more screwed if we didn't grow up with programs where everyone was rewarded for their success, rather than just winning. We had the chance to learn a lot of things that you can't display on a medal, without which we'd be even more messed up.

So stop the hate on for the participation trophies; participating was not and is not a bad thing.

Thursday, November 20, 2014

What "disability rights is a joke" actually means

Content note for uncomfortable truths about abuse, neglect, and murder. Also for sardonic tone.

Remember I wrote back in February about Skepchick's big ableist mess and double down and triple down?

Remember that bit where they decided that I'm not a real person but instead a 4chan troll identity who exists to make social justice look bad? Because "disability rights is a joke"?

Maybe you think you're an anti oppression activist & have thought that, or you have friends who express that, who think that ableism isn't really and that disability rights is ridiculous. Before you get on that train, sign on to that idea, think about what you're really saying:

You are saying that the right of disabled people to live in places that aren't institutions is a joke.
You are saying that our right to an education is a joke. Young disabled people who should never have had to become symbols have done so, just advocating for their right to go to their neighborhood schools.
You are saying our right to adequate medical care is a joke. People are denied organ transplants every day because of disability, and apparently that just tickles your funny bone.

You are saying that curb cuts and talking walk lights at intersections are absurd. You are saying that ASL interpreters and elevators and ramps and Braille and automatically opening doors and kneeling buses are worthy of ridicule. That you get your jollies thinking about the disabled people killed by police--how many neurodivergent and Deaf people, particularly PoC, were injured or killed by law enforcement? A lot, that's how many.

You are saying that the very idea that a disabled person abused or killed by a caregiver might, you know, deserve justice? Is preposterous. Never mind that we have a much higher rate of being murdered and abused than non disabled people do. Never mind that our killers are portrayed with sympathy. The part that baffles you is the part where we seek justice.

And the hilarity just doesn't end there!

You think my right to sexual autonomy is a joke. Judges have declared that people are too disabled to have been raped. Not that forcible sexual acts didn't take place, but that they don't count because the victim is disabled. Yuk it up, because there are jurisdictions where people with certain disabilities are considered unable to consent to sex. Isn't that just so funny, that we are considered unrapeable and yet when we choose to engage in sexual activity we need to be protected from our own inability? Bet you're just busting a gut. Will you pee yourself when I tell you that frequently, disabled people are placed on birth control or sterilized without consent? I can just see the tears of mirth running down your face as I tell you that this serves to protect people who serially sexually assault disabled people. Oh I didn't mention your favorite part of the joke, did I? The part where over 90% of disabled women are sexually assaulted, many over 10 times.

Still laughing?


Saturday, November 1, 2014

It's autistics speaking day...and I have not much to say

Today is I think the third? anniversary of the day some Australian group decided that not using social media was analogous to understanding being autistic. And a couple friends of mine said "ummm how about you listen to us instead?" and it's still going strong.

My first post on this blog was for that Autistics Speaking Day. This post is too. Except I don't have a whole lot to say.

I've been saying the same things for half my life. I've had to say the same things for half my life because people, on the whole, don't listen. I don't have much new to say because that would build on the old. Until the old is heard the new won't make sense.

I dearly love making sense, even though it tends to make angry people who don't want to understand.

If you are a parent, your child still needs to know they are the child you wanted and dreamed and hoped for. That isn't going to change, though I'm sad I have to keep saying it. If you are an Autistic person, you are a person who deserves to be treated as such. If you are my friend, know that I love you fiercely. If you are my community member & I haven't met you yet, welcome.

Maybe next year there will be call to say something new, instead of self echolalia. Echolalia is also communication, though, so it will meet my needs for now.





Image is a beaded bracelet that says YES on one side & NO on the other. It's a way of speaking when mouthwords won't work.

Monday, September 15, 2014

How dare I? How dare you not?

When a parent kills an autistic child, it's so predictable. People come out of the woodwork to defend the killer, demand we walk in her shoes, to stomp their feet and demand of me "how dare you judge?"

Easily.

How dare you not?

Who are you to decide that a child's life is so not worth living that killing them is a good thing? How dare you cheer on abuse and murder? How dare you support execution of someone for the crime of having a disability? How do you live with yourself?

Judging someone for rocketing past the fuzzy zone and straight into "that is just awful" territory is easy. It should be reflex, easy as a blink or a sneeze. Our (well, my. USian) culture has a big taboo, though, against this evolutionarily advantageous reflex, and it blames the Bible.

Here's the thing though. That "judge not lest ye be judged" thing that people like to throw out? It doesn't say "do not evaluate things". It doesn't say "thou shalt not come to conclusions and announce them". It says "you will be held to the same standards you hold others to".

"Don't kill your kid" is a pretty low standard. I have no doubt in my mind that I can life the rest of my days without committing, or even considering, infanticide. I'm a bit terrified, though, of all the parents who feel this is too stringent a standard, who are eager to make clear that maybe they will kill their kid, they're just not sure that "no killing" is a fair expectation.

In a world where "not murdering your child" is a standard many people are unwilling to commit to live by,  a world where unrepentant murderers have cheering squads, no young or dependent person is safe. I fear for the children of people screaming "don't judge". When you shout at, harass, threaten me for holding folks to this very minimals standards, you are saying you don't think you can meet it (or can't be assed to try, speaking of scary). This doesn't make me the problematic person in the scenario.

"Don't kill people" is a standard that should be effortless. People who can't or won't meet it should be judged, swiftly and harshly. It should be as easy as a blink. It is as easy as a blink. If you can't be sure you can meet this standard, that's your deficit. I will continue to easily, effortlessly judge people who kill their children and dependents, because evaluating "that is not an acceptable action" is the right thing to do.

Edit: pic added for pinners. Not related to content of post. It's from magnetic resonance angiography.

side view of the blood vessels in my brain

Wednesday, September 10, 2014

Things about working with "emotionally disturbed" children that will break your heart.

This is a response to the awful, pooooor aduuuuuuults Cracked article about working with "troubled children". I worked in a classroom for kindergarten-4th graders with an educational classification of Behavior Disorder/Emotionally Disturbed. I loved them all, each and every one. Most of them had been through more by age 7 than anyone should be ever. This post is dedicated to them. I hope they are all safe & healing now.

Many adults who work in schools, particularly in special education settings, aren't there for the reason I was there. I was there because of a love of children, even (especially) difficult children. I was there because I remembered struggling and I wanted to be the adult who wasn't around when I was a student. I tried. But the system is set up to fail. Here are the things about teaching my "emotionally disturbed" students that ultimately broke my heart.

1. Their difficulties don't arise out of nowhere.

The majority of my students had spent some time in foster care--meaning they had been removed from their families of origin. Others had early onset mental illnesses. Some had both of these factors going on.

White children who are dealing with enough at home that they get removed from their parents in this part of the country? They are dealing with multiple kinds of abuse. So we had 8 year olds who were having flashbacks to being molested. I had a kindergartener who saw her mom get stabbed. A student whose stepdad took his medication for funsies, making the boy's medication levels completely unpredictable. Even the students who had never been removed were dealing with not optimal home environments. The parents just didn't have the coping skills, & things an adult gets away with? Gets you classified "emotionally disturbed" if you copy it at school.

What this meant in practicality was that we were often trying to undo what happened over the weekend, or we were trying to help a student who always felt in danger to learn and to practice emotional regulation skills they may have never seen modeled before. That's setting some students up to fail--if they've never seen emotional regulation, and they neurologically don't have a frustration tolerance, learning & "behaving" is tasking their resources to the brink.

2. Other adults are unempathetic assholes

The systems set up in these classrooms tend to run on "points" or "tokens" and they lose tokens for Behaviors. Some may call it "failing to earn" but to the students, it's losing. Keep in mind that these are fairly young people, and they often are at a distinct disadvantage in emotional regulation.

I have seen adults, multiple adults, gleefully tell students how many points they're losing. This tends to send them into a downward spiral because not getting all your points = not getting privileges (we're not talking a big cake. We're talking craft supplies here). I have seen teachers goad students who are doing the best they can to self calm into getting more upset.

If you have a young person with emotional regulation difficulties, and they are trying to talk themselves down when they had a bad start, just shush and let them talk themselves down! This is a big step for many students I know. Talking oneself down, even with a "tone", is much better than dumping a desk. (My strategy for "a desk is about to get dumped" is "jump onto the desk, Gollum pose", because being ridiculous can interrupt a downward spiral & it isn't threatening. I've never seen anyone else use this strategy).

I have seen teachers who were supposedly trained in deescalation get into the face and space of a student who has suffered severe abuse & is having a hard time. Then when the student runs or pushes them away, the adult uses this as an excuse to take them to the ground. Getting in someone's face is not deescalation. Moving away and shushing or saying soothing, validating things is deescalation.

Behavior Disorder classrooms are a place where seclusion & restraint are very popular. And never let anyone tell you for a minute that it's not punitive or retaliatory. It is punitive and retaliatory. If a kid shoves a boring book off their desk, that's disrespectful, sure. It is not something that is a risk to anyone. There is no excuse to restrain a kid for that.

My classroom had a room that was ostensibly a break room. It isn't a break room when you shut students in there, no matter how many beanbag chairs are in there. Saying something smartassed is not an excuse to lock someone in a room. It's like the adults in these settings have forgotten what it is to be small, young, and have a limited coping repertoire. And they punish the students in abusive ways for manifestations of their disability. That's not ok. That's not helping.

3. You will have to call CPS. They will blow off your call.

As I said in point 1, most of my students had been in foster care. Most of them had dealt with abuse or neglect. Some of them were still dealing with abuse and neglect.

As an educator, I was a mandated reporter. As the person who would jump on a desk, raise my eyebrows, & set off a giggle fit instead of encouraging rage, I was the Trusted Adult. They knew I was on their side.

Being Trusted Adult sucks sometimes, because a small child will tell you the very gory details of what started happening when he moved from his mom's house to his dad's. And you will think you can help, you have to report to CPS, and CPS isn't perfect but they can do something.

And then CPS will tell you that the kid is lying, don't you teach behavior disorder? Those kids lie. That is what they will tell you.

This is the hill I chose to die on. A student confided in me, things I'm pretty sure most young people wouldn't think of out of their imagination. I called CPS. CPS told me my student was lying. I said he wasn't. They said they'd believe me if the lead teacher in the room called. The lead teacher in the room elected not to call.

And I walked out. I couldn't help this young person through the accepted channels, but damned if I was going to sit there and pretend it was ok to call him a liar. I could do more good not in that classroom, & that's sad.

Many many students in these classrooms are in them because abused children act out as their only way of asking for help--and then their being in these classrooms is used as an excuse to not help them. It isn't ok. It will break your heart into a million tiny pieces.

4. Your students will be blamed for anything that goes wrong within a half mile radius.

A goal of our class was to prepare our students to go back into the mainstream classrooms. They were mostly academically on grade level in at least a couple areas. They could mostly comprehend the work, it was dealing with the behavioral demands of the classroom or the amount of busywork that made things a problem for them in the regular ed classrooms.

Part of the least restrictive environment, then, was that they would go to music and PE with the other students at their grade level (with or without a teacher, depending on how they were doing that day) and had recess and lunch at the same time as their age peers. In theory this is a start, right?

In practice, the other students learned very quickly that if you do something obnoxious on the playground, you won't get in trouble if you blame one of my students. Even if it was obviously not something they would do (the other adults didn't really care what my students would or wouldn't do, they were Those Kids). I had students be blamed for throwing sand when they were in a swing on the complete opposite side of the school yard.

And heaven help the student if they're going to academic classes with their typical peers and someone can't find her book or pencil. Obviously it was my student. Those Kids Steal/Hit/Draw On The Walls. Except...no they really didn't. My students did act out sometimes but they didn't do a quarter of the things they were blamed for.

And the PE teacher, music teacher, regular ed teachers? They were nearly as bad as my coworkers in terms of nitpicking at their behavior. A frustrated sigh is age appropriate. Crumpling up a bad drawing is pretty normal. That is not call to demand that I take them back to the self contained classroom. I see typical kids on the other side of the room throwing their crappy drawings at each other, what on earth is this double standard?

5. You will fall in love with your students, & you may not be able to save them, & failing will never. stop. hurting.   

The thing in point 3? Actually happened. For reals. The student in question was about to go back to his home school district, his regular ed classroom with resource room time if he needed a break, when everything went to hell. He went from reading to me and discussing the stories to all sorts of not ideal stuff that I won't discuss because our worst days deserve to be at least a bit obscured. It was a fast downward spiral.

And another student? Really only needed sensory accomodations probably and only ended up in my class because he was defending his right to them. But because he had been placed in our classroom had to work his way back into typical classes and was always considered a Bad Kid because one of his teachers had refused to work with his needs. If you don't get out of the emotionally disturbed self contained classroom by high school you're stuck forever.

Another? Ended up going to the special day school for kids with severe emotional challenges. Another got pulled out of school entirely because his parents didn't want other adults able to observe him. That's frightening.

I couldn't save them from their families, couldn't heal their coping mechanisms. But I loved them to bits, and I know it was mutual. A big hug and "I love you" made it pretty clear. "I wish you were my mom".

"I made you this necklace to play with so you don't break your pretty one".

cylindrical wood beads on fishing line
 
I have had this necklace for over 10 years. One of my students from that classroom made it for me. Of all the things he could have chosen to do with the craft supplies, he chose to help me not break things, because breaking things loses points whether you meant to or not. That's a lot of thinking outside himself, huh?

But I couldn't save them. Too many adults who work with young people think only about themselves, act as though their students are having difficulties just to piss them off. And it isn't the case at all.

Maybe you won't fall in love with them, which is something I'm sad about. Love is a thing my students needed, instead of being made into monsters and adversaries. They had enough adversaries.

I loved them, they loved me, & it breaks my heart that so few other people saw what I saw.

Saturday, September 6, 2014

Filling a need: Autistic PoC Anthology Crowdfunding Request

Autistic Women's Network has an exciting, new, first of its kind project: An anthology of writings by autistic people of color (PoC). Lydia Brown of Autistic Hoya will be editing, and the call for submissions is here.

But to make the anthology a reality, we...need money. So what is going to happen now is I am going to tell you why this project is important to me, and then I am going to link to the crowdfunding site.

As readers may recall, I have been around a while (diagnosed in 1986, started doing the activism thing in 1999). You may also recall that I am biracial. So I came of age, and came to advocacy, in a period of time when there were very few role models. My college library's section on autism had:

-2 books by Donna Williams
-2 books by Temple Grandin
-2 books by Jessie Park's mom
-a book by Bruno Bettleheim

and that was about it. The public library also offered me Tony Attwood's book, Stephen Shore's autiebiography, Liane Holliday-Willey's book, and 2 general autism books. All by white people. Most by women, although the professional books made very sure to remind the reader that autism is more common in boys.

Now I'm going to ask you to think of the first 10 vaguely public autistic people you can think of. Quick!

Did you think of 10? Do you know 10?

How many of them were PoC? According to the books, autism occurs in the same rate among all races, ethnicities, classes, all the demographics. Yet most people who can come up with ten Autistic people can only come up with ten white Autistic people.



Image is 2 medium to fair skinned female presenting people, both with dark hair, dark eyes, and glasses. The person on the left has short black hair, is visibly of Chinese descent, and is wearing a blue t shirt. The person on the right has long very dark brown hair, is ethnically ambiguous, and is wearing a burgandy tank top. They are standing on a hotel luggage cart.

The above picture is me with Lydia, the anthology editor. We were being silly and riding around on a luggage cart.

A thing that any Autistic PoC notices at most autism events: they are mostly populated by white folks. Organizations around autism tend to be predominantly white, the parents who can afford to go to conferences (and the Autistics who can afford to go to conferences!) are predominantly white, school districts that can afford to send their teachers or other professionals tend to be majority white--it's really obvious inequality when you see it. This year at the Autism Society conference a speech language pathologist told it like it is: we need more color at these things.

Autistic children who are of minority heritage are diagnosed years later than their typical peers, often after years of struggling, being labeled "bad", and missing out on key services. There are all sorts of heartbreaking reasons that tie into this and other people are better at discussing the issues that come up in their communities.

But one of the things this leads to is that the children who are diagnosed? Still don't have as many role models they can relate to. I just can't relate to Temple Grandin for a number of reasons, and the little boys and girls of today are still hurting for role models who look like them, who understand the cultures they grew up in, who understand being racialized and dealing with ableism at the same time.

Image is a small medium skinned smiling girl with curly dark hair smiling standing in front of a lighter medium skinned female presenting person with dark hair in pigtails, also smiling. The little girl is wearing a hot pink swimsuit; the adult is wearing an orange swimsuit & purple tank top.

This is me with a young friend of mine, Emily (photo used with permission). Em is 4 years old, also biracial, and also Autistic. She's funny, friendly, extremely happy...and going to have a different experience of being Autistic than is expressed in most of the narratives out there. We are building an Autistic community, we are building quite the library of writings. Emily deserves to see herself reflected in those writings. If she goes to autism events, she deserves to see people who grok her experiences.

Knowing people who can relate to my Autistic brain: great and validating. Knowing people who can relate to being racialized: validating. Knowing people who grok being Autistic and dealing with racial issues? Priceless.

I want the next generation of Autistic kids who go looking in the library for stories they relate to to be able to find more than the autiebiographies and the doom and gloom books. I want them to see that, contrary to what the media will tell you, autism is not a neurology reserved for upper middle class white boys. They are not alone, even if they're the only child of color in their class. I want their parents to feel less isolated, by reading things by people who have been where their child is. I want their professionals to have a resource for how things interact, how the autistic experience is different across cultures. I want something to touch that shows our diversity and our shared experiences.

Do you want that too?

If you are able to donate, it'd be much appreciated. The Indigogo link is here. Please pass along the fundraiser, and please pass on the call for submissions as well.