Participants List 2022

 Autistics

Christiana J. MacLeod Autistic for Life (See Trigger Warnings)

Ira Eidle Autistics Speaking Day Demonstrates what "Nothing About us Without Us" Actually Means

Corina Becker Wibbly Wobbly Thoughts

David Cameron Staples (Catsidhe) Who Speaks for Us?

Who Speaks for Us?

 David Cameron Staples (Catsidhe) sents us Who Speaks For Us? on Dreamwidth

Trigger Warning for mentions of the Judge Rotenburg Center, Autism Speaks, and related policies.

It is the second of November as I write this, because of course it is. So... I apologise for not leaving myself time to make this shorter.

Or to the point, whatever that point is. (Edit: I've figure out what the point is, and removed a half-dozen side tracks. For future reference, they included

• How closely do ADHD and Autism overlap? How many of the understood common symptoms of one are actually symptoms of the other? Can a symptom be common, but show up in different ways depending? Can one have both versions? Oh wow, I'm almost writing that essay just in the asking of the questions.
  
• What does "Neurodiverse" mean anyway, and who is included within it?
  
• Are there Neurodivergent conditions which aren't inherently disabling? (I'm thinking especially of Synesthesia.)
  
• What does "Disability" even mean?

So. Anyway. Incipit:

Who speaks for us?

In the beginning there was Autism.

Then Asperger's Syndrome was discovered, and it was technically a different thing.

And that's the first complication, because that division created a barrier between autists.

Wibbly Wobbly Thoughts

 Corina Becker writes Wibbly Wobbly Thoughts on No Stereotypes Here

I started writing this for ASDay 2021. I got mostly done and then lost my train of thought. Picking it again for ASDay 2022.

I keep trying to come up with something to write about, and I start down a good idea, and then get distracted or the inspiration fizzles out. Sometimes I feel despair, because a lot of the topics that come up are the same topics I've written about years ago. Sure, I could write about the exact circumstances of the issue, how it affects people. Use my hard-earned degree to form some sort of argument. But I also just want to write about other things. 

I started to write an open letter to my government about how the pandemic has impacted me, specifically financially. It was going to be an anecdote to support the argument for Universal Basic Income. I was going to compare my life before the pandemic, and now, with how instead of worrying about support coming in from different areas with amounts that adjust from week to week, I can make financial decisions and be confident about being able to afford basic needs and make financial decisions about repairing or replacing items, about being able to take time off work when sick or injured. Because I'm currently on unemployment, and that pays more than ODSP and my job. 

However, I also wanted to write about corsets, and history bounding. The other year, I wrote my thesis about accessibility at autism conferences, and then I went to a costuming convention where a lot of the attendees were disabled. 'If only I had known sooner,' I thought. 'Writing about disability in costuming would be fascinating!' 

I got into corsets from a friend I met at an autism conference; they were wearing a corset and describing how it felt like a calming hug. A personalized weighted blanket. Over the years, I explored mass-produced corsets available online, and determined I needed to make my own. It would also be handy to wear to the LARP I had joined. And so, I dived into the world of historical sewing. 

Which lead me to this convention and the realization that I don't really like modern clothing. The hems, the fabrics, the fit. It has been revolutionary for me to relearn sewing and attempt to sew my own clothing. Clothes should not feel like something to tolerate, but provide comfort and ease. If I must dress myself in clothing made from bed sheets in order to do so, then so be it.

And at the same time, I want to talk about stories. About how research can be used to tell stories. How research can be used to tell stories through data. There's a tendency to respond "well duh" to some studies, and I think that is a disservice to both the autistic community and researchers. Yes, we write stories and blog about issues. But studies take our stories and combine them. By combining our stories and codifying, it says "this isn't just a few people, this is a wider issue."

And I want to talk about my thesis, a learning experience I treasure. How it sparked for me an interest in research and the possibility of further studies. How I want to connect what I've spent all these years studying to my communities, as tools to our causes and needs.

I want to talk about my new kitten, Ezra, and the joy he gives me. Especially when he's being sweet and cuddly. 

I want to talk about the sudden loss of spoons, the desire to do something but being unable to start or complete the action. The need to write something, anything, only to feel the spark fizzle out at an empty screen. The despair as idea piles upon idea, building up to an aching pressure.

I want to talk about pain. The sharp stabs and the deep aches that become constant companions. The pains that are temporary, the pains that are chronic, and the pains that very slowly heal. 

And finally, I want to talk about perseverance. Whether through hope or spite, the importance of continuing on. To do what you can, when you can, however you do it. How I'm learning to forgive myself for taking time, as I forgive others. To recognize my own limits, as I recognize the same for others. To pause and rest when I need it, and to take my time recharging. To let myself fall apart. To let myself put myself back together at my own speed. 

To let myself enjoy things. 

And, when I'm ready, to write again. 

Autistics Speaking Day Demonstrates what "Nothing About us Without Us" Actually Means

 Ira Eidle posts "Autistics Speaking Day Demonstrates what "Nothing About us Without Us" Actually Means" on History of the Neurodiversity Movement at Autistic Archive

Autistics Speaking Day is a perfect example of what the term “Nothing About Us Without Us” actually means. An Australia-based organization called the AEIOU Foundation proposed a “communication shutdown” on November 1st, 2010 to represent the supposed frustration autistic people face with communication. This meant spending an entire day off of social media. Autistic people found out about this, and found it to be very patronizing and missing the mark.

As you’ve seen, autistic people tend to find the internet to be a bastion of communication and comradery, a lifeline, even. Two autistics in particular, Corina Becker and Kat Bjørnstad, decided to take action and form a blog. They reclaimed the day to showcase the writings of autistic people. They also wanted to take a jab at Autism Speaks’s name, so it was titled “Autistics Speaking Day”. It’s now observed on November 1st every year.

Let me explain what “Nothing About Us Without Us” actually means. Many people do not seem to understand that. It was a term first used in Hungarian Labor organizing, then again in South African Apartheid protests, and eventually as part of the Disability Rights Movement. It is also ASAN’s slogan. What it does mean is that nothing about a group of people, in this case people with disabilities, should be done without their meaningful leadership. What it does not mean is that people with disabilities literally have to be involved with everything disability-related, including things where they are not in charge and are instead used as tokens.

People use “Nothing About Us Without Us” to justify working with harmful organizations, because they think the statement means they need to be at the table all the time with everything. In an ideal world, yes, this would be the case. But the reality is that many times, when we’re invited to the table, we get nothing but scraps. That is not meaningful inclusion nor leadership, and thus, it is not consistent with “Nothing About Us Without Us”. It also means when something is not done with meaningful inclusion, that the people the cause is about will speak up about it, even if they aren’t at the table. Especially if they aren’t, in fact.

In this case, Corina and Kat didn’t need to join the AEIOU Foundation’s leadership to enact the change they wanted from within. Instead, they formed their own thing where they were in charge and gave a mic to other autistic people. “Nothing About Us Without Us” is inherently a saying of protest, of revolution, and working from within is not protest. It doesn’t mean never try negotiations, just that negotiations are not required for it to be true.

Autistic for Life

 Christiana J. MacLeod writes Autistic for Life on The Autyssey

Trigger warning for mentions of bullying, police brutality, and suicide

“YOU’RE NOTHING LIKE MY CHILD!”
…is an all-too-common response from a parent when an autistic adult shares their journey on social media. Can sometimes include such indictments as “you’re not SEVERELY autistic, you can use social media, you can speak, you’re not autistic at all” ad nauseam.

Well… no, quite right, I’m not like your child. I will quote no Nazi eugenicists and call no kettles black, but no two autistic people, child or adult, are exactly alike. So what if #ActuallyAutistic adults aren’t like #autistic kids? We’re still autistic, years be damned, but we have different challenges in adulthood than we do in childhood. And if we’re gonna be totally honest… among those challenges is just staying alive while the rest of the world continues to pick on us. And make no mistake — it IS a challenge.

Read More Here

Participants List 2021

Ira Eidle Autistic Archive

Ilona Mennerich Petition Autism Bavaria

oneautisticperson Autistics Speaking Day 2021: A challenge for Academics

Giraffe Party Daily Question

Kat Autistics Speaking Day 2021

David Cameron Staples (Catsidhe) It's a Dream Life

Saoirse Autistic Speaking Day:AAC, Paganism, faith and communication access

Emma Goodall We Matter

We Matter

Emma Goodall wrote for ASDay 2021

We Matter

autistics speaking day - my effort: I ran out of spoons so can’t communicate more than; We matter, we are important and valuable just as we are.

ASDay 2022!!!

Another year, another Autistics Speaking Day!!

November 1st, instead of being quiet online, be loud!

Submission form: follow this link!

Autistic Speaking Day:AAC, Paganism, faith and communication access

 Saoirse posts Autistic Speaking Day:AAC, Paganism, faith and communication access

 Trigger warning/caution notice, this post discusses religion, ancestors, food, pagan and holidays

It is just after Halloween, and for many people this is a one day holiday, for me those who don't know I am pagan and for me Halloween more of a day I mark in or as part of my Samhain, which is a larger Holiday period? festival? I'm not sure the right word for it,  Samhain (pronounce sow-in)  is one the the 4 fire festivals in Irish paganism, I am not going to give a long i depth lesson on Samhain or a history lesson, I highly recommend learning about it from actual Irish people, aka people from and living in Ireland who are part of the living culture there.  I would also recommend looking at things like blog posts and videos by native sources, I would recommend checking out writings and videos  by Lora O'brien as a starting off point or as well as out dúchas.ie, and for Irish paganism specifically there is the Irish Pagan Scool. These are all good native sources I recomend for starting your own research into Samhain and Irish paganism.links provided below.

It's a Dream Life

 David Cameron Staples (Catsidhe) posts It's a Dream Life

It's a Dream Life

Have you ever had that dream?
You know the one:
You have a job to do, but you're not quite sure what it is.
Or how to do it.
Or why it's important.
Or what to do it with.
Or where.
But you know it's important.
And everyone's angry.
And it's your fault it hasn't been done.

Have you ever had that dream?
You know the one:
Someone's telling you something really important.
But you can't hear them.
And when you can, you can't understand the language.
And when you can, you can't hold on to the meaning.
And when you can, you forget it right away.
And you remember much later that there was something important.
But it's too late.

Other people say they dream of flying.
I dream of dreaming of swooping and gliding.
Other people say they dream of talking to important people.
They dream of being there with them:
Treated as important,
Their opinions listened to,
Their anger valid and relevant,
Their ideas acted upon by others.

Have you ever had that dream?
You know the one.
Everyone's angry with you, but you don't know why.
Nobody will tell you what you said.
Nobody will tell you what you did.
Nobody will tell you what rule you broke.
Nobody will tell you what you should have done.
Nobody will accept your apology for ... something really bad, apparently.
It's all your fault and you have no idea why.

It's a Dream Life.

Autistics Speaking Day 2021

 Kat has posted Autistics Speaking Day 2021 on Katy Doesn’t Live In Smithton

CW: death mention, child abuse, dissociation, behaviouralism and psychiatric abuse, suicidal ideation, discussion of ableism throughout, hospitalization, guardianship mention, non-graphic mentions of sexual harassment and abuse.

Please read [link]

Daily Question

 Giraffe Party has posted Daily Question: What is something truly meaningful and genuinely helpful allies can do (or do differently) to better advocate for you and bring positive change toward your life? on Facebook

 Check it out here [link] 

Autistics Speaking Day 2021: A challenge for Academics

 oneautisticperson posts Autistics Speaking Day 2021: A challenge for Academics on Tumblr.

Autistics Speaking Day 2021: A challenge for Academics

Well, it is the 1^st of November 2021. Hence, Autistics Speaking Day 2021. A day in which autistic people (and some allies) all over the world will be posting blog posts, uploading videos and circulating other content about whatever we think is important. In some of my previous posts, I have challenged myself, disability service providers and teachers to do better in specific areas. This one is a challenge to academics, specifically academics that teach autism related university/college courses.

A colleague of mine in the disability sector is doing a Master of Education degree in Inclusive Education. Of particular interest, she did a topic specifically about autism spectrum earlier this year. She found the topic interesting and informative. This is great and I am not disputing that she gained a lot from the topic. However, we had conversations about it that I found ….. discouraging. For example, the topic did not mention neurodiversity, the neurodiversity paradigm or the neurodiversity movement at all. A problem in my opinion given these terms are so often discussed among autistic people both online and in person. Similarly, the topic made no mention of the double-empathy problem but did discuss theory of mind/autistic people having difficulty with theory of mind. Again, I see this as problematic given that the double-empathy problem is often discussed among autistic people.

At the same time this was going on, I had been asked to record a lecture for a new topic at the university I work for. The topic title included the term neurodiversity and the lecture I was asked to present introduced students to neurodiversity (and related terms) as well as autism spectrum. This topic had a medical textbook we were referring to (and critiquing) each week. It was so easy for me to critique the textbook! Like the topic my colleague was doing at another university, the textbook mentioned theory of mind but not the double-empathy problem and there was no mention of neurodiversity. In addition, the textbook went through potential causes of autism spectrum based on research but made no mention of the fact that a significant number of autistic individuals do not want the cause of autism to be found. Dates and symbols that are important to the autistic community, such as the rainbow infinity symbol and autistic pride day (18^th June) were also missing.

Basically, what was missing from both the topic that my colleague did and the textbook used for my topic was autistic viewpoints and research. The double-empathy problem is something that autistic researcher Dr. Damian Milton, an autistic researcher proposed. Neurodiversity and the neurodiversity movement as phrases were thought up by Judy Singer, an autistic sociologist. That said, ideas regarding the neurodiversity paradigm and movement started much earlier and are thought to originate with Jim Sinclair, an autistic advocate. Recently, current definitions of neurodiversity and related terms come from a blog post by Dr. Nick Walker, an autistic researcher.

Why is this missing from university/college autism spectrum topics?

As mentioned above, because this is mainly discussed among autistic people and academics have largely not engaged with autistic people when designing autism spectrum topics. If they have engaged with autistic people, it is usually to give a one-off lecture about their personal perspective/experience. I do not deny that this is important (my students at the university say that it is) but we can go further. Autistic people around the world are writing/videoing about whatever we see as important today, some of those autistic people (along with other autistic people that have not contributed to this day) are willing to engage with universities/colleges, to bring the knowledge and perspectives that are currently missing. It is up to academics to engage with these people.

Why is it important for universities/colleges to include this content in autism spectrum topics?

There are many answers to this question but I will go with my favourite answer. For the students. This semester at the university I work for, I had postgraduate university students. Many of whom had some experience learning about autism spectrum before. Some of these students were learning about the double-empathy problem for the first time. Paraphrased versions of their comments include “very valid way of looking at it in my opinion” and “makes perfect sense.” Why should students miss out on certain perspectives like what is currently happening?

Another answer is for autistic people (and it seems fairly likely that students in an autism spectrum topic will end up working with autistic people). One student in my class just last week had a rant about the state of language used in research articles related to autism spectrum. She was annoyed that the language was very negative for most articles, the language being very deficit-based and terms such as “high-functioning autism” used. I was quite happy this occurred. It gives me hope that my students will not use such language in the future. That maybe the language used to discuss autistic people will change for the better.

The two reasons above are why I challenge academics to find autistic people that are willing to share knowledge/perspectives from the autistic community and researchers. To engage with these autistic people about what content should be included in autism spectrum topics that is currently missing. To include this content and invite autistic people to present said content.

We can do better. For autistic people and for our students.

I have another challenge for readers of this blog post that may not have heard some of the terms used in this blog post before. I challenge you to do some reading.

To read about:

The double-empathy problem (Milton, 2012): https://www.tandfonline.com/doi/abs/10.1080/09687599.2012.710008

The possible origins of the neurodiversity movement “don’t mourn for us” (Sinclair, 2012 [but first given in 1993]): http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR1/html

Neurodiversity current terms and definitions (Walker, 2014): https://neuroqueer.com/neurodiversity-terms-and-definitions/

Thoughts from the person who coined neurodiversity “what is neurodiversity?” (Singer, n.d.): https://neurodiversity2.blogspot.com/p/what.html

Written by oneautisticperson aka Leeanne Marshall

Petition Autism Bavaria

Ilona Mennerich posts Petition Autism Bavaria

Trigger Warnings: politics, mention of pathologizing language, political discrimination

Petition on the Autism Strategy Bavaria

1. In the recommendations for action on the Bavarian autism strategy, the AWMF-S3 guideline for the therapy of autistic disorders from 2021 is laid down as the basis. Many autistics and autism associations oppose the content of this guideline and do not approve it. 

Autistic Archive

 Ira Eidle submits the Autistic Archive, an archive of Autistic Communities and the Neurodiversity Movement.

The Autistic Archive.

Preparing for ASDay 2021

 As you can see, the participants list for 2020 is now up!

And the submission form for 2021 is open!

Looking forward to November 1st! 

Participants List 2020

 Autistics

Jane Strauss #AutisticsSpeakingDay - Autistics Speaking in 2020

Leeanne Marshall It Is Time

J.T. Buchheit Autistic talents in the workplace are going to waste

Sam Passer In: A Look Into The World Of Autism (see content warnings)

Kat Bjørnstad Police and the Autistic (See content warnings)

Ben Edwards Not Special Needs

Corina Becker A Small Thing

Jay Autistics Speaking (See content warnings) 

Other

Fierce Autie posted Autistic History: Autistic Speaking Day

Autistics Speaking

Content Warning – Talk of abuse

 Jay from Jay's World writes

Autistics Speaking

I be ask why I believe should have all autistic voice hear.

I can only tell about me.

A Small Thing

Corina Becker  writes A Small Thing on No Stereotypes Here

Nothing stays the same. Everything changes. 

That's the opening for one of my attempts to write something today. It's a piece on depression. I got partway through trying to describe the deepest pits of despair and darkness, and then I realized I didn't really want to talk about that. 

Even taking out politics, I think we've all had enough of that this year. Heck, enough of that for the past four years. 

So, slight confession. I don't know exactly how anniversaries work and how they're calculated. I just know that on 15 October 2010, I wrote Real Communication Shutdown, which was followed by Autistics Speaking Day and Preparing to be Loud. 

It is now 2020, and 11 years later. And I'm not sure whether the 10th anniversary was last year or this year. I'm not very good at these sorts of things. But I counted the years on a piece of paper, and according to my count, it's been eleven years. 

It definitely doesn't feel like yesterday. This year alone has felt too much like forever for it to be yesterday. But I'm reminded of both the changes and the similarities, both the good and the bad. 

There are the obvious things: I live in a different location. I dress differently, my hair has grown and I dye it a different colour. 

Family drama has come and gone and most like will come again. 

I've learned that my body is not quite as reliant as I thought it was, and the gears of capitalism is wearing it down. 

And countless other things, the painful, the joyful, the sorrow, and the wonder. 

Including, the fact that this is the year that I am finally finishing my Disability Studies degree. As I type, I am in my last elective course: creative writing. One might think I can get by with minimum effort, and then pass. But they would be wrong. There are some frustrating aspects about the course; there are a lot of readings that show great misunderstandings and misjudgment towards genre fiction. It's a widespread attitude throughout academia that makes studying creative writing typically difficult. 

However, I'm making my own challenges for the class, taking the assignments as they're given and putting my own twist to them. And the result is that I'm finding myself more encouraged to write more.

The last few months, I've been making more things, sewing, embroidering and crafting. It's been a sliver of silver lining, and I wish I could just stay home and create.

I know that there are still troubles ahead of us, and I hold onto the fact that writing gives joy. That making things makes me happy and gives me reasons to start my day. It might be a small thing, sometimes, but sometimes a small thing is all a person needs to keep going. 

And sometimes, a small thing becomes a big thing, and lasts for years. 

Here's to making things. Here's to the small things. Here's to the big things. Here's to the things that just make us happy in these dark times. Let them keep us together. 

Not Special Needs

 Ben Edwards

Not Special Needs

I do not have the need for people to stare at my eyeballs. I do not have the need for people to talk to me about weather, news, or celebrities. I do not have the need to conform to peer pressure, to always have company, or make up lies. I do not have the need to avoid in-depth, complete focus on particular topics or types of tasks. I have the need for people to understand that I cannot do somethings a certain way without being unduly stressed, regardless of my intelligence, college, career, or independent living prospects, without patronizing me or pitying me. I have the need to bring up and respond to issues in the autistic community that not everyone will agree on without being called divisiveness. I have the need for people to stop seeing visibility of needs like that of a blind, wheelchair using, or intellectually disabled person to be the equivalent of the reality of them. I have the need for people to stop being told which autistics my autism makes me qualified to speak for by non-Autistics. I have the need to stop being equated with lightning strikes, car wrecks, cancer, AIDS, diabetes, and combat situations. I have the need same need you have to have non-universal needs respected, even if I don’t have the power to force them on you. As an autistic, I am the greatest martyr, carry the greatest burden, For it is neurotypical needs that I have spent my life caring for, neurotypical needs that held back my career, made me go broke, made me feel isolated, meant my life couldn’t be my own, or I could not be myself. It was caring for the needs of 6 billion children on the neurotypical spectrum that made me be defensive and protective. I spend endless amounts of money, take countless hours out of work, have to schedule and keep appointments with professionals that aren’t covered by insurance to take care of the needs of neurotypical children. I am interrupted over four times a week by an incident involving a neurotypical child. I can’t be myself; my life is not my own. And so many neurotypicals are always easily offended. I can’t speak honestly, talk about more meaningful things than sports, or avoid eye contact without them dogpiling me, contacting my employer, or costing me my job. I feel like I’m walking on eggshells. As someone affected by neurotypicalism, I need support, not criticism. Neurotypical needs have caused me PTSD and depression, but in spite of all this, being a neurotypicalism parent, child, and sibling is the most rewarding thing I’ve ever done. But one thing is certain: I don’t worry what will happen to these kids after I die. #NeurotypicalismAwareness