Becoming “the diagnosed”, discovery of being autistic and disabled, felt heavy for many reasons. This zine is about navigating post-discovery life while also learning the horrible history of how autism research, white supremacy, and eugenics are inextricably linked. Reckoning with this history, drawing this zine, and discovering the #ActuallyAutistic community on social media, helped navigate my internalised ableism.
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On January 6, I was diagnosed with Autism Spectrum Disorder Level 1, and Attention Deficit Hyperactivity Disorder (moderate combined) by Dr Danuta Bulhak-Paterson, who is based in Melbourne. It took four months waiting, 20 tests, two long Zoom calls, and $1800.
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In June my diagnosis was “upgraded” to Level 2, by Dr Bulhak-Paterson, after she reviewed several other diagnosis reports and disability assessments.
I suspect in the future it will be upgraded to Level 3.
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Levels are Medical Model language for: “How much difficulty can be medically calculated as derived from autism in this persons’s life?”
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Levels don’t mean much. Except to Centrelink and the NDIS.
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Level 3 = Most support funding available
$8,000-$100,000 per year
Level 2 = Officially recognised, support funding available
$8,000-$100,000 per year
Level 1 = No access to support funding.
Also the most suicides.
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Has my autism diagnosis helped me?
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Yes.
I had wondered for 18 years if I was autistic. I was told I can’t be many times. It was a relief.
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Diagnosis has allowed me a grace with myself I didn’t know was possible.
I can give myself a break now.
It also helped me…
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Come out as bigender
Accept my eating disorder diagnosis
Seek eating disorder treatment
Establish a sensory diet to help regulate emotion
Feel there was a reason for some things in the past
Leave a not OK dating situation
Work on my ableism
Reimagine my future
Start finding congenial community
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None of these things need diagnosis, but this is how it happened in my life.
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I grew up poor, imagining diagnoses were special.
I liked seeing it on paper. Outside of myself. I liked feeling someone recognized some of my struggles.
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Have I faced stigma because of diagnosis?
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A little.
Stigma can only survive where there is shame though. So I work on unlearning my rampant internalised ableism pretty regularly.
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Working on my ableism
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I have a lot of privileges that keep me safe from the harms of other folks’ ignorance, too.
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literacy
Access to nature
Fact-checking skills
Ability to ask for help
Chosen family
Financial stability
Good friends
Free time
Capacity to receive
Australian citizenship
Wide-ranging life experience
Leaving skills
Strong intuition
Adventurousness
Creative outlets
Good manners
Self-awareness
Charm
Access to healthcare
Fierceness
Food & housing security
Grit
Whiteness
Strong hope muscle
Employability
Good attitude
Passing privilege
Profession
Bogan background
Courage
Education
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It’s wise to be cautious about disclosing. I suspect I have faced less stigma than most, partly from privilege protections and partly because my self and my life are made up of so many things that the Autism Industrial Complex says are impossible for “someone like me.”
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It helps when i remember that Autism™️ Is full of shit, and fuelled by oppressive forces.
Sometimes, despite all this, the stigma gets to me.
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Was I looking for my diagnosis?
Was it hard to get?
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Yes and yes
Generally, autism diagnoses are easy and affordable for white cis hetero middle and upper class masc. boys and young men to get. Every layer of identity difference makes it harder to get diagnosed in terms of cost, wait times, qualified clinicians and availability of government subsidies.
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Autism™️ Ideal
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There were a lot more things against me getting a diagnosis, than for it. Before I was diagnosed, I paid $800 and waited two months, completed many questionnaires, and sat through a three hour assessment, only to be told the clinicians has “proven” I couldn’t be autistic. They were looking for Rain Man.
I did not react well. I knew I was autistic and I felt erased and ripped off.
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This, I discovered, is a very common first experience of autism diagnosis for AFAB folks and femmes.
Some of my traits were used as both evidence that I was, and wasn’t, autistic.
The first time is really bad. Second time were prepared to fight and strategize.
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Strategies to get diagnosed
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What I wish I knew earlier
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Local safety tips in Adelaide, S.A.
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#ActuallyAutistic people suggested I take an extended break from my life, time just for processing my diagnosis.
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I didn’t. I felt like it wasn’t possible. And I ended up in a psych ward. Where I am writing this from. So in a way, this is my diagnosis processing time.
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#ActuallyAutistic is a community of folk who are tenuously connected via cross-platform social media hashtags, and do not see ourselves in research on us, stereotypes of us, or medical recommendations “for” us.
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Our lived experiences, conversations online, the books and zines and documentaries we make are evidence of the white supremacist, eugenicist, colonising profit motive at work in autism advocacy, medicine, and research.
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What the what?
What do all these words mean?
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Image defining
white supremacy
Eugenics
Profit motive
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patriarchy
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Most actually autistic people were AFAB (acknowledged female at birth) or have lived experience of femininity and its costs. Women, sissies, femmes, sistergirls, transvestites, queers, twospirit, bigender, brotherboys, genderqueers, crossdressers, ballroom queens. Because generally, cis male hetero autistic folk are centered in all things “Autism Official.”
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Autism Official / The Autism Industrial Complex / The Autism Mafia
There is big money in autism, and powerful systems at work to ensure the money and power stay with those who have it.
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Autism is the pet diagnosis of oppression and oppressors.
Like it has always been.
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Hans Asperger was a Eugencist doctor in Nazi Germany. Part of his job was to identify disabled children, so they could be sent to be ‘exterminated’, or more accurately, murdered, in the name of ‘race hygiene.’
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Some of the disabled white male children charmed him. He enjoyed their company so much, he decided to save them. They could not be judged to be non-disabled, so he convinced people they were racially valuable by describing them as ‘little professors’ and diagnosed ‘Asperger’s Syndrome.’
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To be autistic (“have Aspergers”), an Aspie, an auntie meant, in those days, “to act supremely white, so hyper masculine to be ‘worthy’ of the dubious privilege of being ‘breeding stock’ for the white supremacist, eugenicist, Nazi project of creating a ‘super race.’
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To this day, organisations and people (the diagnosed, doctors, researchers, activists, ‘autism moms’) who have autism as their single issue focus or main personal identity tend to have a…
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White supremacist delusion and toxic masculinity problem. And don’t get me start3d on the continuation of eugenics… oh go on then.
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Eugenics today
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Mistaking comfort and entitlement for worth is a peril of our times.
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#ActuallyAutistic people know our worth, the power of our collective voices and individual experiences, we are uncomfortable with exclusion from things supposedly for us and about us. So we make our own meaning.
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My favourite definition of autistic people is…
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People who cannot be less human
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We cannot be less than we are
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I think of autistic people as those of us whose bodies remind us of our indigeneity, our dignity, our sovereignty, and cannot bear to be treated as less. So we resist.
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Charmed by the siren song of voice from below.
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I believe this is what happened to Hans Asperger all those years ago. Powerless children who refused to cower.
I believe those children awakened a memory in Hans of his own humanity. A memory that directly profiting from genocides and holocausts had hidden deep inside himself. So he resisted, doing a good thing in spite of himself.
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I believe what some call the ‘autism epidemic’ is an epidemic of people whose existence contstitutes resistance to busy, to war, to hyper competence, to holding it down all the goddamn time.
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Our challenge is to keep remembering, even when our life paths bring comfort, support, and belonging.
We can choose the side of our eugenicist roots and let privilege go to our heads. Or, we can resist, again and again.
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With deep gratitude to:
Rainier Hotchkiss, whose bravery is asking for what they needed made this zine possible.
My teachers and guides in liberation: Sonya Renee Taylor, Mariame Kaba, Dra. Rocio Rosales Meza, Leah Lakshmi Piepzna-Samarsinha.
Beartopia, Bess Hepworth and the Cubs. The activist fam I didn’t know I had.
The astrologer, for lighting my hope flame.
Olivia Watchman, bestie, for always showing up
Laurie Hepworth, for always seeing and hearing me in the dark
Universities, for sharing your hyper masc. histories and tools so I can use them for anti-oppression jobs
We are the people we need and who need us. 💜
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Eugenicist View aka Patholgizing Medical Model: disabled people are broken and we’ll try to fix it.
Sympathy View aka Social Model of Disability: society breaks disabled people and we need to fix society.
Liberation View aka Disability Justice: Disabled people are whole and are experts on living well.
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If this resonates with you, you can support and connect with me via PubPub, Patreon, Kofi, and Instagram @neuroqueero. Leadership of/from below is medicine for everyone. Including Hans.
