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~BIBLIOGRAPHY~
Garb, H. N. (2021). Race bias and gender bias in the diagnosis of psychological disorders. Clinical Psychology Review, 90, 102087
McClure, T. (2022, April 26). New Zealand denies entry to autistic daughter of immigrant couple. The Guardian. https://www.theguardian.com/world/2022/apr/26/new-zealand-denies-entry-to-autistic-daughter-of-immigrant-couple
ASAN. (2023, March 22). Asan condemns restrictions on gender-affirming care. Autistic Self Advocacy Network. https://autisticadvocacy.org/2023/03/asan-condemns-restrictions-on-gender-affirming-care/
Berger, P. L., & Luckmann, T. (1966). The social construction of reality. Penguin Books.
Foucault, M. (1961). Madness and Civilization: A History of Insanity in the Age of Reason.
Crane, S. E. R. (2017). Foucault, disability studies, and mental health diagnoses; a literature review. Journal of Disability Studies, 3(1), 23-28.
Geschwind, D. H. (2008). Autism: many genes, common pathways?. Cell, 135(3), 391-395.
Arnold, L. (2022), “First there is a mountain, then there is no mountain, then there is: whither identity?” in The Routledge International Handbook of Critical Autism Studies. Taylor & Francis.
Baron-Cohen S, Leslie AM, Frith U. Does the autistic child have a “theory of mind”? Cognition. 1985 Oct;21(1):37-46. doi: 10.1016/0010-0277(85)90022-8. PMID: 2934210.
Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. MIT press.
Botha, M. (2022), “Community Psychology as Reparations for Violence in the Construction of Autism Knowledge” in The Routledge International Handbook of Critical Autism Studies. Taylor & Francis.
Gernsbacher, M. A., & Yergeau, M. (2019). Empirical failures of the claim that autistic people lack a theory of mind. Archives of scientific psychology, 7(1), 102.
Descartes (1641), Meditations on First Philosophy,
Yergeau, M.R. Yergeau (2018), Authoring Autism: On Rhetoric and Neurological Queerness, p. 10
Butler, J. (1997), The Psychic Life of Power: Theories in Subjection
TikTok
Video Essay
Oh so thats why ive always related so deeply to your videos. It was the transgender autistic to transgender autistic communication
I got diagnosed with autism about a month ago and I really love this video. I’ve noticed a lot of things like the dehumanisation of the mentally ill in my everyday life, especially because I study applied psychology. Once we had to have a debate about whether people with a low IQ should be allowed to vote, I was the only one who thought they should be able to. In this same debate someone brought up that autistics also shouldn’t be allowed to vote because apparently we have no emotions or empathy. The more time I spend in the psychological field, the more I grow convinced that it’s made for psychologist to have/use/observe the mentally ill as little play things as opposed to helping people. I say this as someone who has greatly benefitted from therapy. I think we need to let go a little bit of objectivity and the idea of inherent truth when approaching these matters. I really loved how you approached everything in this video and it really made me think.
I think this conversation would be massively improved by the inclusion of a number of people who are profoundly disabled by their autism. The reality is that a lot of self-diagnosed people tend to be around the more able end of the spectrum who, quite bluntly, live in a very different world to people who are nonverbal, have an intellectual disability, or other common symptoms we consider in the high support needs range of autism spectrum disorder, as a broader part of the ongoing modern segregation the disabled experience. Unsurprisingly, a lot of these folks aren’t on YouTube and TikTok, and the few who are don’t end up with hundreds of thousands of followers in social / political commentary bubbles like this. We often talk about platforming the marginalized in leftist social media-based communities, and like, this is really one of those times where it’s probably very necessary to do so, because for a lot of people, people who are almost indistinguishable from able-bodied / neurotypical folks have become the representative model of autism, despite the fact that (according to autism research sites like Spectrum) 20 – 35% of people with autism are nonverbal and 25 – 30% have an intellectual disability. While not the majority, those are some heavy numbers, and they never seem represented when it’s time to discuss online autism community drama.
For me personally, I feel like my autism symptoms are what are keeping me from getting an autism diagnosis. It feels ironic. I just seem to happen to have that sort of experience where I don’t show the stereotypical symptoms, but I have such a difference in language processing and understandig that I just cannot relate to the words and terms used to describe autism. I just keep getting into situations where my needs for accomodations or the misunderstandings seem to be explainable by autism to other people. It’s such an alienating experience. I often struggle with labels, as they can never perfectly encapture my experience, I prefer vague ones like neurodivergent. But in contact with most people, I constantly find myself having to explain my difference.
I’m part of the “I don’t have autism, but I am neurodivergent, and the coping skills & advice from the autistic community are very helpful to me” boat. I do have ADHD and C-PTSD, but there are a few key diagnostic criteria that I lack for an autism diagnosis. Also, the diagnostic structure as a whole kind of sucks, because ‘disorders’ are less like a checklist and more like a pie chart, where a person has varying degrees of many different behaviors & symptoms. The field of psych *is* becoming more nuanced and inclusive, albeit the change feels comically slow at times.
As for the group of people self diagnosing who do not actually have autism, if they benefit from self diagnosing, if they feel seen and understood by autistic creators, if accommodations & life skills developed for autistic people help them function easier & be happier, then go for it. Self diagnosing can be hard to get right, for any disorder. Because it’s almost like neurodivergence is really less of a checklist and more like a pie chart. The increase in popularity of the word neurodivergent (I think) is a good thing, our behaviors just diverge from what is common neurologically. This puts emphasis on two things: 1) disorders have biological and environmental factors out of the persons control that very often alter their neurology and 2) to diverge is to be different from, not worse or better than, whereas the word dis-order in itself means out of order, and the negative implications of ‘failing to be orderly’ is so like, ew.
I remember my sister once tried to get an ADHD diagnosis, but they denied her having ADHD because “She did well enough in school”
Ten minutes in and this is fantastic
I had a 9th grade science teacher (this was nearly a decade ago), who, on the first day of school, told our class something that completely changed my view of the world. He said “facts are only true to the best of our current knowledge, and are not the objective truth, which is impossible to reach”. It was that day that I started to question literally everything people told me. Not in a paranoid or obsessive conspiracy theory way, but I’m a way that really helped me understand what it means to think critically and for myself.
This video rlly brought me back to that day. Amazing work ❤
As a high masking adult woman, i still struggle with calling myself nuerodivergent even tho im formally diagnosed. Even tho as a kid i tip toe walked, stimmed, had horrible sensory issues, lined up my toys, struggled HARD with social skills, etc etc, i still sometimes doubt myself because of how deeply engrained the stereotypes for people with autism are for me. It all began with “funny haha this adhd/autism video is just like me” until i started to bring it up with my therapist and she actually told me she was thinking of suggesting i get tested for adhd. For me, it wasnt about seeking a diagnosis to excuse my behaviors, it was so important because it explained WHY i acted/felt how i did and made me realize i wasnt weird or bad, that i just had different interactions with the world. Now that i have medication, a job that works better with my skills, and a routine that keeps my life in balance, i am THRIVING. Thanks for this video, it was great!
Personally, I think this may also apply to labels in the queer community. I find labels (queer and neurodivergent ones) confining because they don’t describe me quite right. I found it freeing to let go of labels. However, others may find labels comforting, and I think we should allow people to sit and vibe how they want to. Let people choose who they are
Im always afraid of watching “tiktok diagnoses people with autism” kind of videos because i don’t want to be disappointed in the author. Thank you for making this video a lot LOT better than what i thought it could be. Damn i wish i could get an official diagnosis and stop constantly doubting myself.
one gripe i’ve always had with the demedicalization approach in regards to neurodiversity is that people often use it to discount the suffering present in many neurodivergent people’s lives that stem from our interactions with the outside world.
It almost feels more dehumanizing to hear people say “oh you’re not any less capable than anyone else, you’re just a little different” when i can’t even go to target without noise cancelling headphones because if they play the wrong song on the store radio, i’ll have a meltdown. Like please just acknowledge my struggles and need for support. I do really feel like i am being thrown under the bus for the sake of being progressive sometimes- I also wanna say that there seem to be a lot of people who hold the view that being seen as disabled is somehow inherently dehumanizing, which is extremely extremely ableist
I didn’t expect to learn about dehumanization, the power of language, and the impermanence and undefinability off the self in a video about self diagnosis. Thank you, Alexander.
I feel like the fact that different practitioners have different conceptions about autism not necessarily backed by evidence is one of the most important points in this video. I’m a psych grad student and both I and every other mental practitioner I’ve seen in the past 5 years basically unanimously agree that I probably have autism, so when I went to go get tested it was really just a formality. It took me a year and a half to get an appointment and it happens in 4 appointments over the course of a month.
When I got my results back I found out that they decided I was not autistic on the first day after an hour long test but still required 3 more 2-4 hours appointments I had to pay for. Instead I got diagnosed with social pragmatic communication disorder and tell me it’s basically the same thing it’s what we renamed aspergers too (This is not true even if it is used that way, they merged Asperger’s into autism spectrum disorder because it’s the same thing) because I don’t repeat anything, am too intelligent, and I didn’t volunteer information about my special interests without being asked. Also my sensory issues are just weird and unrelated apparently.
Barring a side the intelligence bit which is complete garbage, the traits they mentioned are all far less common in women than in men and is part of why it is so under diagnosed in women. Also the hour long test was the ADOS-2 which has previously been found to only accurately diagnose less than 33% (I can’t remember the exact number) of “high functioning” girls who had previously been diagnosed with autism.
Long story short I called cap, my therapist called cap, my friend who does research into autism diagnostic testing called cap, and now I have to wait another year to pay a different practitioner another thousand dollars to get it fixed. And like honestly I wouldn’t bother me nearly as much if they had given me no diagnosis but they gave me the wrong one on such obviously flawed logic. I’m just very happy I’m in a place financially to spend an extra thousand dollars on a label that is essentially meaningless other than it’s internal value as affirmation of an aspect of my identity I’m very confident in. In summary mental health practitioners who can’t prove they have kept up to date on empirical research in their specific field from the last 10-20 years should not be allowed to continue practicing until they do IMO.
What I’ve noticed more as I’ve got older is how scared parents are if an autism diagnosis. I learned recently that, although recommended several times, my mom always refused to get my diagnosed.
My partners mom refuses to believe that they have autism, even after being diagnosed.
It’s sad because both are truly good people but are very stubborn in this one particular area
Me bringing up ADHD to my psych and her saying “No you can’t have it you have a degree”, that put me off getting diagnosed for a good 5 years. I can access services in Australia for other conditions and now am looking at getting diagnosed with ADHD/Autism but the possible ADHD is a barrier of its own. Oh yes I will do that, a week later on the weekend, also having to ring someone…
So, I have a sister. She was diagnosed with depression, and only depression when she was around 15. Years later, my parents, her, and me are saying to doctors “I’m pretty sure she has something else guys, can you please help?” And they kept saying “it’s just depression”.
She had bad impulse control, had a hard time learning and focusing, had anger issues, etc. At this point she had turned to heavy drugs because none of her medication was helping her. And, like, she died a year ago. When my parents were talking to a therapist, the therapist said “yeah, it sounds like she had adhd”. It was too little, too late.
A personal anecdote to prove that sometimes psychiatrists don’t do their fucking jobs.
I grew up in a relatively small town where there was only one psychologist/psychiatrist (not sure exactly which one she was). When I was going through a period of pretty bad anxiety and depression, I heavily struggled with communicating my feelings to others. I was also a kid, so I knew that even if I wanna get a diagnosis and professional help, I’d have to talk to my mom, and I just had a hard time doing that at the time (my mom rocks, it’s just that I couldn’t trust anybody in general, but she would’ve 100% gone to hell and back for me). The first time I ever opened up about what I was going through was online. I saw a youtube comment saying that they struggle with depression, and because I wanted to comfort them, I opened up about my stuff too and tried to be kinda positive about it even though I generally didn’t think that way about my life. Then someone else just asked if I have a former diagnosis, I said no and explained why, and then they just said that I’m LYING. It made it even more difficult for me to open up about stuff for a good while. After that, I started being a lot softer regarding self-diagnosis.
Being told by my psychiatrist that they contacted everyone they could in the state (AR) and they all said they don’t do adult assessments, and I should have been diagnosed as a child. … Like, okay, guess I’m neurotypical then. 😐But now with people moving to not allow autistic people access to GAC, I’m not trying to get diagnosed anymore.
I was diagnosed with ADHD in 2018, and I can say now, with shame, that I thought very negatively of folks who self-diagnosed. The short, summarized history of mental illness relating to diagnostics/culture, the circumstances obstructing modern formal diagnosis, and the experiences shared by both you and others as presented in this video has humbled me in a way I was not prepared for. As ignorant as this sounds, there were so many new perspectives, insight, and facts shared that I would have never considered otherwise. I never bothered to even listen to or try to understand the experiences of those who claimed a self-diagnosis, and that was wrong of me. Thank you for compiling this video and for the hard work it took. I’m really grateful that because this video came across my suggested feed, I have new information that is going to allow me to better understand and emphasize with others in my community, and hopefully be a more thoughtful and open-minded person moving forward. I’m sure this novel of a comment will get buried, but I just wanted to say in case you saw this, that this video made a really significant impact on me and changed my whole ass mind. I love the opportunity to grow 🙂
I was such an enigma to my doctor as a third grader, they wrote multiple pages of analysis that basically said “idk this looks a lot like autism but I’m gonna go with dysgraphia bc she held her pencil weird” 🙃
I really appreciate this video. I’m a trainee psychologist, and I have also strongly suspected that I have autism since grade 7. I’ve often thought, and communicated to my colleagues, that the medical model of autism (and most mental health disorders) is reductionistic and fails to recognise that often these diagnostic categories are just ways to cluster symptoms/experiences that commonly occur together. I think that the DSM has its place, and that building shared language and shared understanding is important and necessary, but the DSM itself is not the arbiter of human truth. I hope that psychology (and psychiatry, though that’s not my area) continue to move away from the medical/deficit model, and instead focus on individuals and providing appropriate care and support to each individual person based upon their unique presentation and circumstances.
I used to honestly believe that self diagnosis was nothing but attention-seeking behavior, but this has changed my perspective! Thank you for giving me a new way to look at things, a way that is more understanding and less hateful.
One of the things that frustrates me is how hard it is to explain that “I don’t come across as autistic because I’ve become very good at learning how to fit in even though it makes no intuitive sense to me”. Like, just because I’m very good at coping and masking doesn’t mean I’m “normal”.