The deficit model of autism in DSM-5 dehumanizes us by focusing on external traits rather than internal experiences. It's also based in Nazi race science.
How can we push for more relevant diagnostic criteria?
@theautisticcoach@actuallyautistic my dream is that Autism is diagnosed not as a deficit-based disorder, but as a cognitive and emotional difference that, once understood, can help everyone feel connected to their community (Autistic people and Allistic people together)
I would prefer Autism & other NDs to be actively identified instead of passively identified as a reaction when searching for a "solution" to someone's "deficits"
Sean, well said.
I would like everyone to have the benefits of knowing whether or not they are autistic, without autism being medicalised and pathologised.
@Zumbador@actuallyautistic@theautisticcoach right? But I’d never suggest screening until we completely change our (their) entire view of it. It would need to be positive, affirming, and strengths-based. Our systems can’t do that 😢
@theautisticcoach@actuallyautistic I considered getting a diagnosis, but it's almost useless, as I can be myself, self-identify and read helpful texts from autistic people on my own.
Most accommodations that I want would be useful for allistic people too; like abolishing hierarchy, having doctors/teachers have more time and less stress (so they also can help me if I need their help) or having people communicate clearly and not assume that everyone else is the same.
The deficit model makes it so that the aim is to make autistic people cope with the lack of accommodation in a world that is built to accommodate the needs of the neurotypical majority.
In other words, everyone needs artificial lighting in the modern world and how that lighting is provided depends on the needs and feelings of neurotypical people, and when that lighting hurts the autistic person, they are advised on how to disregard or protect themselves from the lighting instead of changing the methods to accommodate both NT and ND people.
@theautisticcoach I'd like the NT 'experts' to ask Autistics about our experiences, then use that data to inform their diagnoses in the future. Is that too big an ask? @actuallyautistic
I'm torn on the need for diagnostics. I think that it can be very useful to get an outsider (who has to be very knowledgeable and be wanting to do the best by us!) that can help make sense of things. Where to be clear: by "outsider" I don't mean "allistic person", I mean "someone who isn't living in your head" and who has the kind of knowledge to help figure out things one might not know how to put.
I feel that while some places requiring some sort of diagnosis, I'd want it to be less focused on "Mel is autistic" and more "Mel has <issues> and needs <accommodations>, and also these are all connected to being autistic". Because while I know myself (at least in theory), I'm not a trained vocational therapist, so I don't know all of the ways I could be accommodated. I'm also not a trained psychiatrist/psychologist, so there's connections I don't know/understand. In the same sense that my oldest nephew looks at crochet as "magic".
@theautisticcoach@actuallyautistic
I think as long as people take one only serious if you have a paper certificate diagnosis and diagnosis criteria are needed.
In order to improve diagnosis a redefined set of criteria would be needed that is oriented on inner experience. But this would mean they would need to take people serious, probably without a piece of paper.
I think we need to have a collective base of information and if possible a simple to follow guide to self identification for adults. For children, we would need something to help adults understand and provide for the children’s needs.
It could be a process of elimination thing with curated instructions to test from sensory issues to thought process assessment.
There are some ideas and images in my head but I’m not awake enough to convey them eloquently I think 😂
@Dr_Obvious@actuallyautistic an article stating with person first language doesn’t inspire confidence in overcoming the dehumanization @theautisticcoach is talking about. Unless that part is addressed, this sort of advancement will mean better ways to assess how not-human certain people are.
@CynAq@actuallyautistic@theautisticcoach
Hmm, labeling a work solely by the criteria if persin or identity first language is used, is too black and white in my opinion.
The attempt to find reliable bio markers that give evidence whether one is ND or NT is much better spent money and time than studies trying to elimate autism or that make crude statements how defective autists are.
@Dr_Obvious@actuallyautistic@theautisticcoach I’m not “labeling”, I’m evaluating based on concrete facts. They used person first language, and that’s a negative mark in my book. It just diminishes the overall benefit the information might have, it doesn’t outright cancel it altogether.
@CynAq@actuallyautistic@theautisticcoach
I looked now into the original paper and they mentioned early diagnosis is for them motivated by early intervention. That is in fact a bad motivation.
But nevertheless I still think that finding simple criteria that are neutral like some features in the retina is a good thing compared to current diagnosis process.
Unless the diagnosis (and even that word itself is a red flag) is neutral or positive, we can’t assess the proposed (discovered) criteria as neutral.
Retina patterns, like skin color, are not neutral criteria when the motive for classification of these traits is not benevolent. Put another way, “prone to repetitive movements” or “might have rigid, mechanical interests” can also be neutral traits if the assessor is believing themselves to be observing naturally occurring traits such as patterns on the retina.
@CynAq@actuallyautistic@theautisticcoach
But repetitive behavior etc. adresses traits that are framed as negative or distractive. Nobody takes offrnse if your retina has this or that feature. An eye doctor might be the only person in the world ever seeing it.
@CynAq@actuallyautistic@theautisticcoach
If they find a correlation between the retina and ND that can't be explakned better by anything else it might become a scientific fact. That byitself is neutral. How the people use that fact and what policies they want to build on it, is not science anymore.
@Dr_Obvious@actuallyautistic@theautisticcoach how is that different than an “expert” associating “high melatonin content” in skin with “lower intelligence”? Is being harder to detect (compared to skin color) make it more neutral?
There’s nothing inherent to skin color that connects it to intelligence (and again, even this term is problematic in itself), yet people have done and continue to do it.
As I said, the “neutrality” is in the eye of the beholder. You can’t assign neutrality to traits without looking at who is doing the assessment and why.
@CynAq Also...severity of symptoms suggests illness, or disease. This is still not treating autistic children as 'children', but rather, as test subjects. Also retinal photography is intrusive, and could cause distress. @Dr_Obvious@actuallyautistic@theautisticcoach
@Dr_Obvious@CynAq@theautisticcoach@actuallyautistic
I have ... concerns about the idea that one could tell "severity of symptoms" from the retina (partly because the concept of "severity of symptoms" is especially fraught), but intrigued by the general idea. (with the caveat that CynAq points out: this is going to be used to dehumanize us further >.<)
Things I explicitly don't know but would like to so I could understand more ...
Does the retina change overtime (say when someone gets PTSD)?
Would/is it be possible to distinguish between different situations? (trauma vs autism vs ADHD vs ...)
What happens when people have multiple? Like, a lot of us have trauma in addition to being autistic, etc
I didn't read the research paper directly, but it's open access. I am not an expert in the field. So I can't answer all your questions.
In my view it's nice that there is progress in finding measurable criteria. Maybe it's not anymore "you are not autistic, because you looked me in the eyes", but, "you are autistic, because I saw it in your eyes".