Christina-Marie "CM" Wright, a.k.a. The Gonzo Mama , "I Don't Remember You Being So... Autistic.", TheGonzoMama.com
Thursday, November 2, 2023
Wednesday, November 1, 2023
I actually don't remember the start of Autistics Speaking Day (I'd just started my freshman year of college), but I've read about it.
I've participated a few times.
I helped with the Tumblr for it, I think 2014-2016?
But as time moves on, the ways people engage in communities have changed. Yahoo groups were before my time. I began engaging in the age of blogs. I saw #AutChat start. I think we're in the age of social media, now, more so than stand-alone blogs.
I'm not sure that's a good thing, but I think it's true. Facebook groups are where I'm most active, now.
I'm still speaking. Just... not usually orally, and not usually here.
(It's also relevant that I've been writing in places that aren't blogs or social media, but that's more the academic side of things than the everyday.)
oneautisticperson, Okay, I get it. But can we also..., Tumblr
This day, the 1st November 2023 will be the last Autistics Speaking Day. This day started back in 2010 as a day for Autistic people to flood the internet with our messages and thoughts. While I have been very busy with my work, I thought I would contribute one last entry.
Okay, I get it.
Planning meals with me around is hard. I am so restricted in what I am able to eat and it is an annoyance. Good chance I can’t eat anything at that restaurant, I won’t eat anything from take-away shop etc. Guess what? It is an annoyance for me to. One of my workplaces has a work lunch coming up and I have to weigh up whether it is worth going. It is at a restaurant I have never been to and doesn’t seem to be located near places I know I can eat at so I can’t just get there early and grab something to eat somewhere else first. I would love not to have this problem. To not have to bring emergency food when I leave for a trip, to not have to eat beforehand when I go to most social gatherings.
But can we also…
Talk about the fact that when my best friend and I made pizza at her house for the first time, I nearly cried because I am rarely included in meals to that extent?
Mention the comfort that familiar foods bring me? If I am having a bad day, I know exactly what I need. It is not just eating the food but also the familiar smells.
Discuss that the same reason that makes food difficult for me brings me so much joy in other ways? My tolerance and enjoyment of show rides for example. Removing one would likely remove the other so I will take the good with the bad.
Okay, I get it.
I see you rolling your eyes when I try to talk about something that interests me. Show rides, neurodiversity, autism, Ned Kelly etc. You have heard me discuss this before and it is boring.
But can we also…
Mention that I have had to listen to you talk about basketball or other things a lot as well?
Discuss how great I feel when I find someone to discuss show rides, neurodiversity etc. with? Online groups in particular have been great with this.
Okay, I get it.
You find my tendency to withdraw rude. I spend too much time alone or with my cats.
But can we also…
Discuss that the noise is too much for me at times? Why must the tv, radio or Spotify always be on in the background? What is wrong with silence?
Discuss that my withdrawal also helps me socialise. It is a balance. I just don’t have the energy to socialise all the time. Withdrawing for a time means I get some recharge time and can socialise more afterwards.
Mention that being alone can be fun as well as beneficial?
Okay, I get.
You feel the need to tell me your perspective all the time.
But can we also…
Discuss my perspective. Discuss my strengths as well as my limitations. Discuss what makes me happy.
There has been attention on moving away from discussing deficits and instead discussing interests and strengths when working with autistic people. This needs to go beyond professionals and be common for families, friends and the wider community.
AutisticIntrovert383, Autistics Speaking Day, The Autistic Introvert
Autistics Speaking Day is an event held on November 1st every year. It is a day where we autistics speak up & advocate for ourselves. Being Autistic in the NT world is exhausting and tiring. It is like being a square peg and trying to fit into a round hole. This is a day for us to be loud and proud, and broadcast our narratives. We broadcast every narrative, and we showcase our Autistic experiences and perspectives to the world. When the NTs become silent and disconnect from all social media networks and forums on November 1st, let’s speak up, advocate, and fight for ourselves and our rights.
Autistics Speaking Day was started on November 1st, 2010, by two autistic adults in the Autistic Self Advocacy Network (ASAN) and the Autism Women’s & Nonbinary Network (AWN). This day was started to protest Communication Shutdown. Communication Shutdown was a day for NTs to stop communication through social media and other networks and platforms for one day on November 1st to imagine the “problems” or “deficits” that we autistics have in communication. We don’t have communication “problems” or “deficits”. It is very hard and difficult for us to interact with NTs due to the double empathy problem. We protested Communication Shutdown because it was started by an organization in Australia that was connected to an ableist autism organization in the US. Enough with saying “deficit” and “disordered”. Enough with saying “different ability”. Enough with saying “HFA” and “LFA”. Enough with the ableist treatments. ENOUGH IS ENOUGH.
Since we are a marginalized minority group, we must fight, speak up, and advocate for ourselves. This helps us to get accommodations and support in school, college/university, the workplace, and in public places. We know what’s best for us. We need accommodations and support, not rejection. We need accommodations and support, not ableism. We autistics know everything about autism & being Autistic from our lived experiences. We need to speak up for ourselves without being drowned out and silenced by NTs. Each and every one of us is different in our own ways, but our lived experiences are valid. We need to boldly and courageously show the world: Nothing About Us, Without Us.
Autistics Speaking Day is an event by us, for us. It is an event where we autistics flood every social media site with our Autistic experiences, perspectives, and views to the world. We need to fight and advocate for ourselves and our needs, as this will allow us to receive accommodations and adjustments. We need to self-advocate for our rights, and we need to self-accommodate our own needs. Let’s spread Autism Acceptance and Autistic Pride, and let’s fight, speak up, and advocate for ourselves. Let’s start peaceful protests around the world not only on this day, but all year long. Let’s start peaceful protests all over the world where we say: WE NEED ACCOMMODATIONS AND SUPPORT, NOT REJECTION. WE NEED ACCOMMODATIONS AND SUPPORT, NOT ABLEISM. WE NEED REPRESENTATION, AND WE DON’T NEED TO BE SILENCED. Let’s celebrate Autistics Speaking Day with a statement to proudly, boldly, & courageously show the world: Nothing About Us, Without Us! :)
Happy Autistics Speaking Day everyone!
chavisory, Reflecting on Autistics Speaking Day, Chavisory's Notebook
I remember where I was when Autistics Speaking Day was born.
I hear people say this about JFK’s death, Princess Diana’s, 9/11, the moon landing, the Challenger explosion, the fall of the Berlin Wall.
But I remember where I was when Autistics Speaking Day was born, and I probably will forever. I remember the show I was working on and the rehearsal I was watching and the studio we were in. The TPGA Dialogues were also in full swing at the time and it was one of the first times I started openly participating in the online autistic community. I’d been tasked with watching music rehearsals that week that didn’t really require my involvement at every moment of the day, so I had a fair amount of time to follow along.
And so I remember precisely where I was when I saw the very first objections to the announcement of the upcoming event, “Communication Shutdown.”
Other people have written more and better than I have about why the concept for such an event was tragically out of touch with most autistic people’s realities. I didn’t really participate that first year; I’d only had both a blog of my own, and my diagnosis, for under two years, and I wasn’t terribly sure of my voice on the subject yet. But it was one of the first times I saw other autistic people in real time, as opposed to what was already in the neurodiversity.com archives, saying “Actually, we don’t have to let something that represents us badly go unchallenged just because it was well-intentioned.” Up until then, I’d been pretty used to just swallowing a vague sadness and feeling of disconnect when media or initiatives supposedly about autistic people just bore no relationship to my feelings or experience at all.
More and more often over the past few years, I’ve found myself not having the time to get something written for ASD, and I thought I probably wouldn’t again this year because of how things have been at work for me, but when I heard it would be the last, I couldn’t let it pass.
I’m sad to see it end, but I think it’s fitting that Autistics Speaking Day outlasted “Communication Shutdown” by a decade, effectively (to my knowledge, it didn’t even persist beyond that first year), and will certainly be longer remembered for its impact on autistic lives.
And it’s good news, in a strange way, that I haven’t had the kind of time to participate that I would’ve liked, because I’ve been so overwhelmed with work. Employment statistics for autistic people generally and autistic women especially have been and remain troubling, so much so that in one longitudinal study on patterns of employment and post-secondary educational achievement of autistic people from several years ago, none of the participating women maintained consistent employment over the course of the study.
I’m more and more consistently working this time of year, and still working in my chosen field (although issues of work/life balance and burnout in theater and stage management remain another story entirely, sadly).
But I miss the people I got to know in those days who I either haven’t been able to keep up with as much as I’ve wanted to, or who’ve dropped out of blogging or activism entirely, as much as I understand their reasons. Life happens.
I miss the blogosphere from before the rise of the social media networks and the relationships it fostered, as much as I’m thankful for the people who’ve come into my life and the connections we’ve formed because of Facebook and Twitter.
I hurt for those of us who’ve struggled with homelessness, chronic illness, long Covid. I ache for those of us who’ve died.
And yet, it’s good news, in a way, that a lot of us are overcome with family and work responsibilities, with homes and pets and children, degree programs, publications, and new jobs both in and out of autism or disability advocacy.
All the things we’ve been speaking all these years to have acknowledged that we should be able to have.
Ira Eidle, Celebrating 30 Years of "Don't Mourn For Us"
In 1993, Jim Sinclair delivered a speech at the Autism Society of Canada’s annual conference in Toronto known as “Don’t Mourn for Us”. It was previously published in the first issue of Autism Network International’s newsletter under “Our Voices” in 1992. This was a very bold speech to give during a time where it was standard to treat an autism diagnosis as a tragedy. Research on autism was still in its early days and there was a much more limited understanding of what autism actually was at this point. Most of the literature on autism came from the perspective of non-autistic people. There were people like Temple Grandin and Donna Williams articulating their lived experiences to the public, though most of that wasn’t necessarily about the actual stigma surrounding autistic people and their personhood. Sarah Pripas-Kapit wrote a chapter in Autistic Community and Neurodiversity Movement that extensively analyzes the historical significance of “Don’t Mourn for Us”. I don’t want to be too redundant in that sense. Really, what I wish to discuss more is how far the Neurodiversity Movement has come since the thirty years since this speech was delivered and why it was so effective at sparking said movement. Autism Network International was a small group of penpals at this point. Jim has talked about how it was probably for the best that they grew at a relatively slow pace, given that the people involved were autistics and cousins. Cousins, by the way, was also coined at this conference by Xenia Grant, one of ANI’s cofounders. “Don’t Mourn for Us” sparked a lot of interest in ANI that really helped elevate its status as an organization. In the following years, a mailing list known as ANI-L was established, then ANI members were invited to collaborate in planning an autistic-led track for More Abled Autistic People (MAAP)’s 1995 conference, and the fallout of that event led to the planning of a Autreat, a conference that was by and for autistic people. So by the mid to late 90s, ANI had made a lot of progress in cultivating autism-specific spaces and conferences that were actually led by the population the conference was about. From this, there was further mobilization that came from the ideas discussed and experiences relayed at Autreat and on listservs. Eventually, with the proliferation of the World Wide Web, websites such as Autistics.Org and Neurodiversity.Net would crop up, acting as central hubs for information on all things neurodiversity, while also acting as ways of further mobilizing on issues related to autism and other neurological disabilities. There were also more listservs, like Martijn Dekker’s Independent Living on the Autism Spectrum (InLv), lists on Yahoo Groups like Frank Klein’s AutAdvo and AutisticSpectrumTreehouse, and websites on GeoCities. You also started to see the term “neurodiversity” tossed around, even seeing it in The Atlantic and New York Times. The turn of the millennium was an ample time for autistic people to organize and talk about autistic issues, as autism was starting to become more of a household name. Some of this was due to their work, but some of it was also because of the most influential autism organizations growing, and the formation of larger autism organizations like Cure Autism Now and National Alliance for Autism Research. A lot was being said about autism, but little of it meaningfully included the voices of openly autistic people. Not only this, but much of what was being said was not truly accurate and not based on particularly good science. It was definitely a moral panic. When autistic people and allies pointed this out, they were often faced with harsh criticism, dogpilling, and even stalking and physical violence in some cases. For some time, the autistic self-advocacy community mostly existed through listservs, WebRings, and blogs. There were a few formal organizations like ANI, and even nonprofits like GRASP, though neurodiversity was still a pretty fringe progressive movement. It certainly wasn’t mainstream by any means. This started to change once Ari Ne’eman and Scott Robertson started Autistic Social Action Committee, later renamed to Autistic Self-Advocacy Network. They facilitated the Ransom Notes Campaign in 2007, where they convinced the New York Child Study Center to remove stigmatizing ads they had about autism and similar neurological disabilities. Then they later became a nonprofit in 2011 and opened a national office in Washington, D.C.. ASAN and others involved with the Neurodiversity Movement hosted several public protests against Autism Speaks, which quickly became the world’s largest, most well-funded autism organization. Soon enough, autistic people who were involved with this movement started appearing in government organizations related to autism and disability such as the Interagency Autism Coordinating Committee and the National Council on Disability. There was also lobbying being done with the American Psychiatric Association on changes to make to the DSM-V. More autistic-led organizations cropped up, including Autism Women’s Network (now known as Autistic Women and Nonbinary Network) and Thinking Person’s Guide to Autism. There was further mobilization against a decades-long campaign to close the Judge Rotenberg Center, evolving into the #StopTheShock campaign. Now in 2023, neurodiversity is a much more widely known word and concept, and the research and literature on autism and similar disabilities is beginning to become more accurate and respectful, though there is still much work to be done. There’s a lot I didn’t mention but could have-the Neurodiversity Movement has a rich thirty-odd year long history-but hopefully what I listed is a decent enough primer. “Don’t Mourn for Us” is truly the manifesto of this movement, and what really sparked all of what I just listed. The reactions to “Don’t Mourn for Us” over the years have greatly varied depending on who you ask. For many autistic people, it has been an affirmation that they are real people who deserve to exist just as they are. For many parents, it has helped them come to terms with the existence of their autistic offspring and shelf their pity, at least publicly. For others, autistic and non-autistic alike, it is disruptive and militant sounding. Some suggest that it is anti-parent. In a lot of ways, it shows how there have always been tensions between ACs and parents (though those groups are not at all mutually exclusive). There is definitely some frustration in Jim’s words, though I personally think said frustration is justified. A lot of this was a response to Jim’s observations of how autistic people were treated and talked about at the conferences xe attended and the St. John’s Autism mailing list, as well as xyr own lived experience. People like Rimland, Kanner, and Lovaas got to parade around their harmful and downright false theories and treatments that traumatized generations of autistic people with relatively little pushback. The “hope” that was given to parents was really a false hope that their offspring’s autism would go away, or that they should ideally be as close to indistinguishable as possible. Not because emulating non-autistic behavior is inherently a good thing, but because being visibly disabled and needing support was somehow unbearable. Jim’s idea of hope expressed here was different. It was hope that autistic people could grow up with people around them who were actually supportive of their existence, that they would be considered worth respecting the autonomy of regardless of their ability to perceive and replicate the same language as everyone else. Jim even says at the end “come join us, in strength, and determination, in hope and joy”. Xe was offering a chance at a better life and better world for both the parent and the offspring that would come with a change of attitude. To me, “Don’t Mourn For Us” means many things. It’s frustration, but it’s hope, it’s grounded in reality, yet comforting, it’s critical but it’s also understanding. It was a great way to spark a movement for social change. If its intention was to be all of those things, then it succeeded on that front. Jim’s advocacy as a whole really helped inspire multiple generations thus far of activists-including, but not limited to Mel Baggs, Lydia Brown, Ari Ne’eman, and myself. That means something. In fact, it means a lot. TL;DR: Jim Sinclair’s “Don’t Mourn for Us” speech is central to understanding the history of the Neurodiversity Movement. It was radical to deliver it to parents who thought their offsprings’ autism was the worst thing to ever happen to them. It helped spark the Neurodiversity Movement, which has seen lots of mobilization in the thirty years since the speech was delivered. People have reacted to “Don’t Mourn For Us” in a variety of ways, and I feel a lot of the conceptions people have about it are inaccurate. “Don’t Mourn for Us” is a lot of things at once, and its complexity is what really helped inspire generations of activists.
Wednesday, October 18, 2023
It is to my utmost regret that I announce the end to Autistics Speaking Day.
Nov 1, 2023 will be the last ASDay.
The ASDay blog will remain online, but we will no longer be hosting the event on November 1st.
Thank you. Thank you for every single entry and participant. Thank you for your words, your music, your stories and thoughts.
Thank you for everyone who has volunteered and supported us over the years.
Thank you for everything.