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abyssalechoes · 5 months
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if only i could cry
to feel that release
but instead
stare blankly
feeling bottled dread
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abyssalechoes · 2 years
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leaving
staying
waiting
waiting
gone away
not to come back
no one yet
so why wait
for the next
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abyssalechoes · 2 years
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Possibly because patterns of rejection can be too painful to fully shake, even if things are getting better
Why do I feel safer
Sharing my thoughts
in the anonymous reaches of the internet
Than with the people I love and care about?
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abyssalechoes · 3 years
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Why do I feel safer
Sharing my thoughts
in the anonymous reaches of the internet
Than with the people I love and care about?
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abyssalechoes · 3 years
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It's the fourth anniversary of my autism diagnosis
And my 28th birthday
Well almost
The two are just days apart.
How have the last four years been you ask?
They started off strong, really
Work was good, I got the best yearly evaluation, I was chugging away at my masters
But it was short lived- with my diagnosis, I decided l would ask for adjustments without disclosing
I needed more time for school, my home life had escalated to unbearable
My request was denied
in fact, more was asked of me as I said I'm overwhelmed
The big boss decided it would be best for me to move along
I was heartbroken - I loved my job, the people I worked with
But social demands increased as my dept moved to marketing
And it turned out I was in a masters I didn't want to do
My partner lived far away
So I quit / was pushed out
I moved across the country
I took on a very part time gig
And these last few years, they've been
Foggy
Frightening
Lonely
Sad
Anxious
They've been a learning experience
Not to mention this pandemic
I've tried to make the most of it
I've been able to read and write and process a lot
I'm hoping these few limbo like years lead to something good
Some positive movement
That I learn something about myself that helps me move forward
But I'm not quite there yet
I'm still in transition
And that's okay too
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abyssalechoes · 3 years
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On advocacy:
I don't want to share myself with the world
Naturally I don't seek much attention
But especially so because
The world hasn't been accepting of me
How should I put myself out there
Facing harm and pain, without support or community
Yes
Maybe my experience resonates
With someone, somewhere
Yes
Maybe seeing my experience could help another
But at what cost to me?
Can I handle it?
Will I lose myself to "influencer" standards?
How many times will trolls make me cry,
Even though I know to resist?
How much more trauma must I endure
To exist somewhat comfortably
In a world that would rather see me violently silenced
When I just want to live a quiet life,
Supporting others
Not for the attention,
But for the sake of it
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abyssalechoes · 3 years
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On academia, wanting autistic researchers to research autism:
It's a pretty thing to say
But do you mean it?
Will you protect me?
From the skeptical gaze and questions of other students
Or worse, professors
When I need accodomation?
From the papers that talk about me and my kind so hatefully
Will those be my education?
Will I have to fear undermining
Unwarranted dismissal
Of my ideas because of biases my colleagues aren't willing to confront?
From so many things I can't describe
That I can't even anticipate yet
Are you prepared to protect me?
When you ask me to participate in your system
A system that harms mine and so many other groups
So slow to change and grow and apologize and repair
Responsible for so much learning, touching so many lives
I hear a voice asking
How much more harm must I go through
To benefit you
When all you've done
Is harm me
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abyssalechoes · 3 years
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On dermatillomania:
It's like emerging from a black out
Where you bored your way through the earth
The earth being your skin
But your skin raw like you passed through earth's core
It's like falling into a trance
Where you have no control
Fingers sliding over skin
Looking for bumps
For the right *kind* of bumps
Looking for that sensation
The crack
The pop
The satisfaction
Just one more
One more
One more
And then it's been two hours
And your skin burns like lava was run over it
But it doesn't stop
You pull away
"Wake up"
But your fingers still roam the skin on your arms
Your neck
Your face
Half the time you don't even know it's happening
Not until it's too late
And the shame floods in
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abyssalechoes · 3 years
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okay so maybe a discord or something where we can text chat or hop on voice chat to discuss papers?
in an academic lab journal club, one person reads one paper and does a 10ish min presentation on it, but we could our own thing - all read the papers or pair up. presentations don't need to be done but we could still post slides or summaries to each other and discuss important points!
I wanna join an autism journal club / informal research group. Any one out there doing this or want to join me?
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abyssalechoes · 3 years
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i wanna join an autism journal club / informal research group. any one out there doing this or want to join me?
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abyssalechoes · 3 years
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I'm just challenging myself to write
Something, anything
And put it out there
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abyssalechoes · 3 years
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to the academy, regarding your expectations post graduation:
if you want grad students to stay in academia after they graduate, you must post more than one or two position per department every other year
because, spoiler, each of your departments is graduating 1 to 5 or more students per year
if it's not possible to create jobs to keep them where you want them, stop shaming your graduates for moving into industry
what else are they to do?
spend 1 or 2 or more years severely underpaid and overworked in a postdoc position that may or may not give them a leg up on the next application cycle?
that's not fair to expect of anyone
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abyssalechoes · 3 years
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author's note: while i still scream on this topic, this work was originally written in 2018. i am pleased to report that some academic work has begun to refer to autism as autism spectrum condition, instead of disorder. And some had really taken to involving the autistic community in their work.
Aspergers is Just Another Functioning Label
So I'm going to talk about something sticky. And I'm going to talk about it bluntly. Maybe I like to stir up trouble. I don’t know. I'm going to try to leave the meatier stuff for experts and point you in the right direction, while I try to focus on a few things that make me uncomfortable with continued use of aspergers instead of autism.
I'm going to talk about why we, the autistic community, should stop identifying as 'aspies' and as having 'aspergers', if you haven't already.
For clarification, we are talking about both the man who discovered aspergers, Hans Asperger, and the Asperger’s Syndrome itself. Asperger the man will always be capitalized, and aspergers the syndrome will always include the 's' without an apostrophe (though it will sometimes be capitalized). I tried to make it as clear as possible which one I'm talking about throughout, but please bear with me as it is a little tricky to distinguish.
A (very) brief history of Asperger, aspergers, and autism
Hans Asperger was an Austrian psychiatrist, from whose research (done mostly during WWII) Lorna Wing coined the term 'Asperger's Syndrome' (aspergers hereafter) and first associated Asperger's work with autism, as it began moving towards the spectrum we know today. Asperger's profile came at about the same time as Leo Kanner was categorizing and labeling some autistic symptoms in the US (Asperger used the term 'autistic psychopathy', Kanner used 'infantile autism') (1) - though Kanner actually seemed to intentionally ignore Asperger's work. Aspergers was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1993 and removed in 2013 with the fifth edition, DSM-V (DSM-5). Aspergers, along with several other autistic disorders (such as Pervasive Developmental Disorder Not Otherwise Specified), were combined to create the Autism Spectrum Disorder Criteria.
These diagnoses were rolled up for a number of reasons: to increase access to disability resources, to more accurately describe autism/autistic disorders, reduce confusion among doctors about diagnoses, and to create more uniform diagnostic criteria - all aimed at improving the quality of diagnoses and increasing the chances people are getting the help and support they need.
Back to the man Asperger
A few years ago (as early as 2005 actually), documentation and evidence regarding Hans Asperger and his Nazi association surfaced (1,3). I hate to redirect you, but others with better resources have spent much more time studying Asperger's past and actions than I have. Plus, I think it's always worth reading as close to the first accounts as possible. The first article, in Molecular Autism, is available in full online and I found it to be an accessible read: Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna by Herwig Czech. Czech details findings and omissions fro'm previous work on Asperger's past, as well as case files written by Asperger and his personnel file during WWII.
In another article, on Nature's site, Simon Baron-Cohen already put together a lot of thoughts about a lot of the same sources I've been reading regarding Asperger, so why do it twice? Check out his article here: The truth about Hans Asperger's Nazi collusion. I know we’re not all fans of Borat’s cousin (I’ve even sided with a recent research article kind of tearing some of his views about autism apart), but his article mirrored my thoughts pretty well.
A highlight about Asperger's research and functioning labels
And this is where I get harsh, I know. Know that I know this and that I hold no ill will towards anyone who wants to identify with aspergers, really. But the more I think about all this, the less comfortable I feel personally with the term. I want to be clear, it is in no way my goal to attack anyone.
I've seen some arguments to keep using aspergers, but in autistic-fashion brutal honesty, I see these arguments as immature at best and elitist at worst.
instagram
Allow me to elaborate. When I first read about Asperger's studies post-autism-diagnosis, my research-trained and slightly obsessed mind could not let go of one thing: Asperger's sample was super biased. He picked only very intelligent young boys with minimal impairments to study and help. So his criteria were incredibly limited in his assessment of 'autistic psychopathy' (to later become aspergers). Many girls and those deemed to have 'debilitating impairments' were literally sent to their deaths (often recorded as pneumonia, though their deaths were intentional), and Asperger was personally involved in more than one sentence (1,2). You can find more detailed information on Asperger's involvement in the articles above, and in the book In a Different Key by John Donvan and Caren Zucker. And probably a cursory search on the Internet.
Back to my point, Asperger's assessment and criteria for autism are biased based on his sample. He didn't seek to study girls or others who fell outside of this 'mild' autism zone (a term, I know the community hates, but bear with me a moment). At least Kanner's kids were a little more across the board in ability and challenges, and gender. I feel that this really limits what aspergers as a category contributes to our understanding of autism. We are not just the 'high functioning' males - we're the entire autistic and gender spectrum. That's not even touching on the racial implications of Asperger's work.
There's also this great movement against using these functioning labels rising up. Functioning labels as in 'high-functioning' versus 'low-functioning' autism or 'mild' versus 'severe' autism. The movement promotes the use of a color wheel for ability and challenges (4,5), as well as the idea that one's ability to manage their abilities and challenges fluctuates from day to day, often depending on energy level. Instead of functioning labels, support labels are promoted (high/low support needs). This movement stands against the invalidation of one’s humanity based on a ‘low-functioning’ label, and the invalidation of one’s challenges based on a ‘high-functioning’ label.
But aspergers is seen as 'less bad', 'mild' or 'high-functioning' autism. In fact, this is how it was designed - Asperger's sample was picked for their mild traits and high intelligence, not as a representative example of autistic traits in children. They were picked for their ability to mask. And it makes sense that Asperger's goal was to make the boys fit into society as seamlessly as possible because otherwise they wouldn't have been deemed worth keeping alive. As many other disabled children were deemed.
I swear all of this leads here: if we're against functioning labels, we must also be against aspergers. It is essentially equivalent to saying 'high-functioning autism'. 'Mild autism' is what aspergers was designed to be when Asperger studied it. It's how we still describe it, often using ‘aspergers’ interchangeably with 'high-functioning autism'. Aspergers was truly like a functioning label from the very beginning; the OG functioning label, if you will, pitted against 'classic autism'. Just like 'high-functioning' versus 'low-functioning', 'mild' versus 'severe'.
I feel that if we really want to commit to no functioning labels, if we really want to stand in solidarity across the spectrum and be taken seriously as a community towards this end, we can't keep using aspergers to describe our autism. It is a functioning label.
A small point in aspergers defense that I can't ignore: aspergers describes a very specific niche of autism. I can't deny solace found in accuracy, and I get it if aspergers is part of your identity. But I'd like to point out that our identities are fluid and will change throughout our lives, just as the terms we use to describe ourselves. I know generally autistic people are not big fans of change, but that doesn’t stop it from happening anyway. I've actually even been wondering if the 'Disorder' in ASD will get replaced with a synonym of Syndrome, Traits or Condition - something else within my lifetime. I'm even hoping for this - I dislike being labeled as 'disordered'. Though, hopefully not Syndrome, I'd rather not have to officially admit I'm an ASS (though this is the smallest of many reasons we shouldn't go with Syndrome).
At the end of the day, you choose how you identify. But please, please don't take that responsibility lightly.
References
1. In a Different Key by Jon Donvan and Caren Zucker - check your library too!
2. Simon Baron-Cohen's Nature Article: https://www.nature.com/articles/d41586-018-05112-1
3. An article in Molecular Autism that discusses the evidence behind Asperger's Nazi ties: https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0208-6
4. A comic article explaining the color wheel spectrum explanation: https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/
5. A second option for color wheel spectrum explanation: https://graphicexplanations.info/2013/09/13/understanding-the-spectrum-in-autistic-spectrum/
6. An article from Spectrum News regarding Asperger's Nazi ties: https://www.spectrumnews.org/news/new-evidence-ties-hans-asperger-nazi-eugenics-program/
7. DSM Wikipedia: https://en.wikipedia.org/wiki/DSM-5
8. ASD Wikipedia: https://en.wikipedia.org/wiki/Autism_spectrum
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abyssalechoes · 3 years
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dear childhood best friend who lied to me then never spoke to me again when i called you on it:
i still think of you
and i hope you think of me too
i hope on some level i haunt you
because your selfish actions have followed me
i hope you have intrusive thoughts
like i do of you
keeping me up late at night
unwilling, unwanted
it's only fair that i keep you up too
you were were a child and perhaps didnt know better
but did ten years of friendship mean nothing to you
i think i know better
a growing part of me forgives you
but a bigger part is still screaming
fuck you
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