Showing posts with label Autistic Trigger-Free. Show all posts
Showing posts with label Autistic Trigger-Free. Show all posts

Thursday, November 2, 2023

"I Don't Remember You Being So... Autistic."

Christina-Marie "CM" Wright, a.k.a. The Gonzo Mama "I Don't Remember You Being So... Autistic.", TheGonzoMama.com

Believe it or not, there are people in my world who still have a hard time accepting that I am autistic, because it doesn't fit with their memories of me in childhood or early adulthood. Some of those people have openly stated, "You never seemed autistic to me." Sometimes, I get the feeling they intend such a statement to be a compliment (it isn't). Other times, it seems to be more of a statement of doubt regarding my diagnosis.

There are others who are able to easily accept and understand that I'm autistic and always have been, but some have suggested that I've become "more autistic" over time. Is that even possible? I mean, being autistic isn't like being caffeinated. I haven't just been pouring myself an extra cup of The Autism every morning for the last few years.

Here's what I've come up with:

I'm exactly as autistic as I have been since birth. However, what those folks from my past remember as me being not-autistic or not-as-autistic is actually autistic me, in younger form, with more energy and desire to mask my neurotype and try to "pass" in an allistic (non-autistic) world. 

Whether they know it or not, what those people are saying is:

You used to put in more effort to make people like me feel more comfortable with you, despite the toll it took on your emotional, physical, and mental health.

The thing is, I never did "pass." I was always treated like an outsider by most of my peers, and the few people who did accept and value me knew exactly who and what I am. Maybe they didn't have a word for it ("autistic"), but they knew I was different than most people, and assimilation was not a requirement for their friendship. 

It took me a long time to realize two important things: First, the energy I spent attempting to appear like others was wasted... I would never be an insider to certain groups. Second, there are people out there who do not demand that energy as a condition for acceptance. 

Those two realizations were life-changing.

No one outside my home knew it, but I could barely get through the day at school when I was young. I would come home and completely melt down--often in violent, harmful ways. I didn't have the knowledge or tools to understand why it happened, and I wished so very much that I could control it, but I couldn't. 

When I went off to college, there was no "home" to melt down in. My campus was very active and involved, and cultivated a climate of connection, so there was a lot of pressure to be social at all times. By the end of the first year, I was so burned out I had to drop out. 

Entering the workforce as a young adult was much the same. I had to get through each day, engaging with coworkers and clients or customers, until I could break away and break down. My "melt down" actions took different forms, and self-destructive or risky behavior was often how I dealt with the emotional toll of feeling like I had to be "on" all the time. 

As we grow up, a lot of societally-enforced messages about socializing and interacting with others are either precisely and methodically taught, or reinforced through aversive responses. That is, we are taught to say "please" and "thank you" and to share our things directly, but we are indirectly taught things like forced eye contact ("Look at me when I'm talking to you!"), that we must refrain from oversharing about our special interests ("Give it a rest, already! No one cares that you like to read about serial killers!"), and that we must--at all costs--try to behave, dress, speak, and present like our allistic peers ("Maybe they wouldn't tease you so much if you made more of an effort to fit in.").

The result is that every interaction ("Good morning," for example) is dominated not by the external connection but by internal struggles and conflict. 

Am I making enough eye contact? Too much? Am I staring?
Am I talking too much? Not enough? 
Is it my turn to talk? 
Are they getting angry? Bored? Annoyed? 
Stop fidgeting! 
Look at them when they are talking to you! 
Don't talk about serial killers!
Act interested. It doesn't matter if you aren't.
What does "interested" look like?
Pay attention!
Don't stare!
Look at them when they are talking to you!

Add to that the pressure to make and have friends, when such relationships are confusing and confounding. Autistic kids and young adults are often taken advantage of because we are taught a lot of "rules" about making and having friends, and we assume that if we hold up our end of the deal (Be Kind. Share Your Things. Be Helpful.), other people will automatically be our friends. And when we think a person is our friend, we will often do what that person wants without questioning because we assume everyone follows the same rules about making and having friends. We may also make inappropriate overtures, such as gifting an expensive or personally precious item to someone who we think is our friend. The problem is, that person may or may not consider us a friend, and such overtures clue allistic peers in to the extent of our desperation for acceptance and make us targets for exploitation. 

The pressure to be accepted may never fully go away. I'm convinced of that. I'm 47 years old and it still hurts when I'm rejected by peers after I've followed the "rules" of making and having friends. It isn't so much that I truly need those relationships as it is that I've been conditioned to believe I need them, so the failure to cultivate them feels like personal failure. 

However, a couple years ago, I stopped trying so hard.

Despite the loss of a household member to COVID-19, the rest of the world shutting down proved to be incredibly healing for me. I no longer felt pressure to be "on" all the time, and my mental health improved.

I realized it was the culmination of an incremental process of letting go of my own expectations that I would be able to assimilate into allistic culture, as well as eradicating my tendency to capitulate to the expectations of others. I had slowly been putting less pressure on myself to hide who and what I really am, and learning to embrace my true self. 

Shockingly, I didn't fail to succeed. I honestly expected to, but I was so weary I didn't care. I'd grown up believing that if I didn't "at least try to fit in" and meet the social and communicative expectations of others, I would be not only alone, but also barred from any opportunity I might want access to. 

I went back to college during the 2020 shutdown, but I did it on my own terms.

I reached out to every professor before courses started and introduced myself. I told them I'm autistic, and what to expect from me in terms of communication and interaction. I told them my communication is sometimes considered blunt, but it is always honest. I stated eye contact is difficult for me, and lack of it should not be taken as lack of attention because I hear and learn more when I'm not forcing myself to maintain it. I told them what my needs are in terms of receiving communication and specifically, critique: Direct is best, because I won't pick up on suggestions offered gently. I told them what accommodations I qualified for through Disability Services, and accommodations I need that Disability Services can't offer me. 

I figured I'd just put it all out there, and take the pressure off myself to be or behave in any way that was inauthentic. If I was met with rejection, so be it, but I wasn't going to add the stress of having to "perform" as an allistic-passing person to the stress of being a non-traditional student who was already juggling parenting of multiple kids with newly added college commitments.

I wasn't rejected. 

Instead, I was thanked for the frank and productively critical disabled rights perspective I brought to classes. My work and talents were appreciated. Although I had a hard time relating to many of my classmates who were the ages of some of my kids, I found connection with several of my professors, and learned I am really, really good at a lot of things when I'm not distracted by forcing myself to behave or present in ways that are not natural for me.

I've even made a few authentic friends, and it's comforting to know and understand the parameters of those friendships. There are no surprise rejections because they began with me being open about who I actually am, rather than a forced, performative version of myself I will ultimately be unable to maintain, longterm. 

Living authentically and openly autistic has been personally freeing, and it has opened far more doors for me than trying to "fit in" with a culture that has overwhelmingly rejected me in the past.

It makes some people uncomfortable.

It makes some people think I've become "more autistic" over time.

It's distressing to some people that I don't do more to make them comfortable around me, as I have in the past. 

It makes some people think they are invited to critique my deliberate and conscientious decision to not cultivate in my autistic children the same lifelong pattern of self-abuse I developed. I am not interested in forcing them to mask their autistic behaviors, communication, and ways of experiencing the world. I don't teach them they need to change. Instead, I try to teach them about what I've learned about allistic people, and tips for engaging with them, when we must, without compromising or apologizing for who we are.

I received a letter from my mother-in-law last year, detailing all the reasons she thinks I am failing my children, and all the reasons why people "hate you... but would never say so." Most of the things she listed were to do with my (autistic) communication style and ways of being in the world, whether she realized it or not. Her assessment was that she thinks I need to "find Jesus." (Been there, done that... dig far enough into my blog or read my first book and you'll find it, along with some seriously misguided political beliefs that I've since disavowed.)

I've found myself, and it's enough.

I am enough.

I'm exactly as autistic as I have been since birth. That hasn't changed.

What has changed is my willingness to compromise my own well-being--and that of my children--in order to gain the acceptance of people who are never going to fully grant it, anyway.

Wednesday, November 1, 2023

Autistic Haiku of My Living Room

 Ben Edwards, Autistic Haiku of My Living Room


My bookshelf standing In a corner, housing all my Special interests

Oh, Brilliant! The 13th Doctor and Autism

 C.L. Bridge, Oh, Brilliant! The 13th Doctor and Autism, AWNNetwork.org


(Contains spoilers for Series 11 and 12 of Doctor Who)

“Maybe I’m nervous. Or just socially awkward. I’m still figuring myself out.” If you’re autistic or have social anxiety, you can probably relate to these words in my Instagram bio. If you’re a fan of Doctor Who, you might recognize them as a quote from the 13th Doctor, whom I headcanon as autistic.

Like most autistic people, Thirteen gets very excited about things that interest her, however small those things may seem to NTs. She loves a laminator. She loves biscuits. She can be so enthusiastic about someone’s scientific projects that she doesn’t realize they have bad intentions until it’s too late. Then there’s the adorable “purple sofa” scene. When I finally got my very own apartment (a milestone that seemed out of reach for many years), my mind kept replaying the Doctor’s happy ramblings about how she’d love to have her own flat and a purple sofa to sit on. She’s trying to make small talk, though her companions think she is being a bit weird.

(Read More Here) 

One Last Autistics Speaking Day

AlyssaOne Last Autistics Speaking Day, Yes, That Too

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.)

Okay, I get it. But can we also...

 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.


Autistics Speaking Day

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.

        On this day, we demonstrate to NTs that we are not broken, we don’t need to be fixed, we don’t need to be cured, and we don’t need to be treated. We are unique individuals who don’t need ableist treatments. We don’t need our square pegs to be forced into round holes. We must fight and advocate for ourselves. If we don’t advocate for ourselves, who will fight for us? We face so much ableism and bullying. We must understand our disability to fight and advocate for ourselves. Speaking up for ourselves allows us to fight for accommodations, adjustments and support. Accommodations and adjustments are not a burden. They allow us to function in the NT world. We need accommodations and support, not rejection. We need accommodations and support, not ableism. We show every sensory pain, every joy, every misunderstanding, every account of being bullied, every joyful moment, and every account of trying to advocate and fight for ourselves. 
        There are many events related to Autistics Speaking Day that are held on November 1st. At this time, social media platforms such as Facebook, X (formerly Twitter), YouTube, and blogging sites are flooded with posts describing our experiences of being Autistic. When the NTs stop interacting on this day, let’s flood the internet with our Autistic experiences, perspectives, and values. We need to speak up, fight, and advocate for ourselves in order to make a change in how NTs see us. We can advocate and fight for ourselves to get our accommodations and adjustments for our needs. 
        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!

#ActuallyAutistic
#AutisticsSpeakingDay
#ASDay

#NothingAboutUsWithoutUs

Reflecting on Autistics Speaking Day

 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.

Celebrating 30 Years of "Don't Mourn For Us"

 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, November 2, 2022

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. 

Tuesday, November 1, 2022

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.

Wednesday, October 19, 2022

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.

Monday, November 1, 2021

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.

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 1st 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 (18th 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

Autistic Archive

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

The Autistic Archive.


Monday, November 2, 2020

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. 

Sunday, November 1, 2020

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

Autistic talents in the workplace are going to waste

J.T. Buchheit

Autistic talents in the workplace are going to waste

The unemployment rate for autistic people is staggering. There are many differing statistics, but they all show an extremely high level of unemployment. A 2014 study from the Bureau of Labor Statistics had only 19.3% of the autistic population working or seeking job opportunities. This is a lower employment rate than that of any neurological disorder.

The worst part about this is that most employers are completely unaware of the benefits autistic people can provide a workplace. Many of us are extremely honest, diligent, and detail-oriented people, and we can flourish in many occupations that are beyond the entry-level status many people pigeonhole us into. The main reason for this lack of jobs is employers' preferred way to select candidates: personality tests and job interviews. I believe both of these are extremely unfriendly toward autistic people. The personality tests emphasize "soft skills" and often ask questions including rating one's ability to read nonverbal communication, and they also sometimes provide short-answer questions about how one would approach difficult situations, thus testing emotional intelligence. These tests either require a person to lie and appear to have a personality perfect for the job or tell the truth and be rejected for not possessing the desirable soft skills. If an autistic person manages to land an interview, the odds are once again not in their favor. A popular study revealed that neurotypicals feel less comfortable toward autistics based on small judgments when met face to face (https://pubmed.ncbi.nlm.nih.gov/28145411/). In an interview, where first impressions are paramount, this is bad news. The only way I have been able to land jobs was showing the interviewers my skills firsthand. But many autistic people don't have the luxury to show their skills, which is a real shame, because in jobs that require extreme attention to detail, many autistics actually have an advantage over neurotypical people in the natural skills they possess, lending more evidence to the theory that we are different from neurotypicals, not inferior to them. All too often, employers are only aware of the harmful misconceptions of autism, leading them to believe we aren't worth hiring because we would just be a hindrance. If they are aware of any positive traits of autism at all, it is often the "IT nerd" stereotype, which does not help those of us in other fields. I believe the hiring system needs work to better accommodate autistic people and give us more of a chance to show what we can do and how we can provide benefits to companies because of our unique styles of thinking. When companies talk about how they embrace diversity, neurodiversity is all too often left out. That needs to change. Not only will more autistic people benefit from finding gainful employment, but employers will realize that we can be a massive boon to their companies as well.

Autistics' Speaking Day: Learning about autism, learning about myself

Julian Edward Frost wrote Autistics' Speaking Day: Learning about autism, learning about myself on autismjungle for ASDay 2018

I realise this is a few days late, but such is life with a full time job.

Since I’ve started blogging, I’ve learnt a great deal about autism, and about why I am the way I am. This will be about the things I’ve learnt.

Sensory Processing Disorder

In Sensory Processing Disorder, senses are either heightened or lowered. I have heightened sensory perception. As a child, I enjoyed eating. In fact, I was mocked for being the “family dustbin” and having “hollow legs”. To me, food was always tasty. This recently became a problem. I am currently trying to lose weight, but I really like food. Despite this, I’m a few kilograms down.
I was in addition hyperactive, and burned up energy at a formidable rate. I also still enjoy having my hair played with.
The downside of heightened senses is that while pleasant sensations are more enjoyable, unpleasant sensations are considerably worse. Pain is more intense, the smell of burning rubber can turn my stomach, Malaria tablets taste utterly vile, and loud music is painful.

Misophonia

Misophonia literally translates as “hatred of sound”. It was proposed as a condition in which negative emotions, thoughts, and physical reactions are triggered by specific sounds. People who suffer from the condition are typically aware that they have it. I certainly know it.
Many years ago, my whole family were having egg rolls for Sunday breakfast. As we were standing around, my sister literally started slurping her egg roll. The sound so enraged me I bellowed at her “STOP SLURPING YOUR EGG ROLLS!” I then got yelled at for yelling. Deep down, I knew I was overreacting, but I was too angry to react normally.

Stress

I handle stress very badly. Worse than most people I know.
As an autistic, my social filters aren’t as well developed as a neurotypical person’s ones. As a result, I have to work hard to behave in an appropriate fashion. Stress causes my filters to fail. It is not atypical for me to start speaking very bluntly at the end of a hard day, to the amusement of my coworkers. I also behave strangely. Once, stressed out, I had nowhere to put an empty cup I’d finished drinking from, and decided to balance it on my head. Once people realised I had a cup on my head, the response was hilarity.

Empathy

There is a myth that autistics lack empathy. This not only misunderstands autism, but empathy too.
There are two main types of empathy: cognitive and affective/emotional. The former involves working out what other people are thinking and feeling, the latter is about feeling what the other person is feeling. Autistics usually score below average for cognitive empathy. This has led some to postulate that autistics also have poor emotional empathy. This is completely untrue. From my own experience, I may find it hard to work out what another person is thinking, but once I work it out, I feel it intensely. From reading comments on the internet from parents of autistics, I know I’m not the only one.

There is so much I’ve learnt over the past eight and a half years. I believe there is still a lot for me to learn.

An Apology

 This is an apology to previous participants. 

To those who have submitted their work, and did not see it show up on this blog or see it included. 

There are very few reasons for why this happened, and for most of these, I apologize. I have always regretted not being able to post every entry to ASDay. 

Most of the entries that I've had to decline over the last 11 years have been professionals or parents trying to peddle their newest book or website. I don't mind sharing that each year our email gets advance copy and interview offers for the Next New Autism Treatment. I don't know about you, but I don't apologize for not approving those. 

What saddens me are those who, for whatever reason, I cannot access. And so, I cannot browse to confirm trigger and content warnings. And I cannot, in good conscious, add to the event. 

I also love seeing all the autistic posts. 

My only relief is that these instances are relatively few; most of the time posts have been scheduled and so I just need to keep checking the link. But the ones that I try every trick I know - changing accounts, switching browsers, even using a VPN (I'm not IT; I'm an English major, this is the extent of my knowledge) - and still unable to find, hurts. I feel like I've let the participant down, and worse of all, I don't know why. 

This year, I'd like to try and fix those posts. So please, join me as I explore past entries. 

~ Corina Lynn Becker