"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.

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

Alyssa,  One 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.)

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.

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. 

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

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]