Is autism self-diagnosis valid? Yep. 💜

Hey all, after reading dozens of research papers, and meta-analyses, and living through it, I made a thing!

I'd love it if you'd check it out! 🥰

https://codeberg.org/alicewatson/asd-self-dx/src/branch/main

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Update: I replaced the header image, now people can complain about the actual research instead of the thumbnail.

Also, before any more guys respond with gatekeepy opinions about my conclusions, try reading the paper first.

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@actuallyautistic #ActuallyAutistic #Autism #ASD #Trans #SelfDiagnosis #SelfDX #SelfDxIsValid #Research #Codeberg

@alice @actuallyautistic self diagnosing autism water's down the term. It becomes meaningless. Also a lot of these tests make "neurotypical" individuals think they might have autism when instead they could just be suffering from something like social anxiety without any mental disorders such as autism.

@moi
You should be prepared for the future. Autism will sooner or later disappear of the DSM. The research is going on the way of the difference switching the paradigm to the social model of disability, abandoning the deficit model.

I'm not here to say it's a good or a bad shift. It's what our actual knowledge on autism shows. It's the direction we took on the subject with recognizing the identity and the culture. Furthermore, we acknowledge that autist doesn't lack of empathy, communication, emotions... Autists show them differently, what is entirely valid. This and others like the neurodiversity paradigm don't make autism a deficit anymore. The human is more diverse than we thought. The bias have deep roots in the 19th century and how they wanted to define the human at this time.

I can understand that people don't a shift in the definition and the paradigm. It allows us to receive accommodations, support, and even money in some countries. And these are often linked to the DSM. Losing all of them will cause issues for the people receiving them. The issue isn't autism nor the DSM. The state need to acknowledge the social model of disability what isn't the case. The support doesn't have to be linked to the medical model but to disability in general.

This isn't the end of the story. Yes! We have more people saying they are autists. This is actually good as the minority is growing. The number of autists doesn't explode. We have better knowledge to spot autists and people can recognize themselves better. This would not be the case in a different economic and political system. Autists didn't have to know it when they could live their life. The actual world put huge pressure on the individual. It closes many doors that were used by autists to cope and have a good life. Here, the environment is against us, what ends many of us to ask themselves what wrong and find they are autists. Here sdx is important for the health of these people. Diagnosis aren't accessible for everyone.

@actuallyautistic @alice

@moi
As an autistic person, the benefits of legitimate clarity about oneself seem more important to me than the exclusion of mis(self-)diagnosed NTs.
This, and the fact that over 80% of self-diagnoses seem to be accurate, makes the legitimacy of self-diagnoses seem logical to me.
Whereby legitimacy probably exists on a spectrum.
I was diagnosed by a specialist and this gave me a good deal of
subjective certainty over and above of the tests I carried out myself

@actuallyautistic @alice

@moi @actuallyautistic @alice 😆 uhm... autism isn't a mental "disorder" it's a mental >>difference<< 🤷‍♀️

@moi @actuallyautistic @alice like... it's fine in a comic if a super hero has super sensitive hearing... what an awesome "ability"

Autistic person with super sensitive hearing glaring at an appliance for it's high pitched "humming"... definitely not disordered but it is DIFFERENT

It's fine in a comic if the character "Rubberman" has highly flexible joints...

Autistic person with hyper mobile joints, "Dang, I just dislocated something... AGAIN!" (Okay maybe that could count as a bit disordered because 🤷‍♀️🤔 but yeah the DIFFERENT swear words I come out with while trying to get the dislocation back in place... are pretty impressive!

@moi @actuallyautistic @alice autism is not a mental disorder
@gri @moi @actuallyautistic @alice
It's actually a trait that goes along with intelligence.
Same goes for Tourettes.

@moi @actuallyautistic @alice Gatekeeping is far more harmful than the occasional self-misdiagnosis. Eventually, those folks will figure it out and move on, after getting to know autistic people and developing a better understanding of what autism is, or seeing a professional and learning of their mistake. I lived for 13 years as a self-diagnosed autistic person before having the $$ to get a formal dx. Those years would have been way more difficult had I not been welcomed into the community as someone who belonged, considering that I did, in fact, belong.

Nothing is getting watered down or becoming meaningless here.

@moi @actuallyautistic @alice Also, there is a very strong disincentive to get formally diagnosed right now, in the US, considering the proposed autism registry. Dangerous times. I won't have my kids diagnosed formally at this time.
@hosford42 @moi @actuallyautistic @alice
At my age I am one of those who never saw the point, or necessity, of getting an official diagnosis. Even in Britain, I'm glad now that I didn't. The world is changing and that is never a safe time to be known to be different.

@hosford42

I'm self-dx and honestly, I don't want a formal diagnosis now. Not with Bobby Brainworm running our health care.

@Uair @hosford42 Oh yeah. I kinda wish I could just hide my dx's from snoopy DOGE.
@hosford42 @moi @actuallyautistic @alice a formal diagnosis can also imply severe consequences for the person's autonomy in many situations. The demands for formal diagnosis from strangers before they take your lived experience seriously or refusing community support because someone doesn't have the same privilege to get formal diagnosis reeks of lack of empathy. We can do better.

@hiway @hosford42 @moi @actuallyautistic @alice

And some people have good reason to resist being “labelled”. It can mean being narrowly & inaccurately defined, being inappropriately excluded & denied opportunities, and more sinister consequences under fascist regimes.

@hosford42 @moi @actuallyautistic @alice
I first got "diagnosed" by my daughter's boyfriend who has ADHD. My daughter was incredulous as she'd never previously realised my issues (I self-medicated a lot).

I've since gone down something of a rabbit hole including thanks to lovely people here like Alice. I'm definitely towards the left of the "gifted"-"autistic" axis and a lot of my issues may be due to social anxiety and a lifetime of trying to deal with that in high pressure jobs, with subsequent PTSD. It doesn't matter. What does matter is being open an helpful to each other so we can each unpeel whatever issues we do have. I wouldn't have been able to do so without the support of people here (it's not over by any means).

What I'm struggling to say is the ultimate diagnosis is not known to us nor is it relevant initially, and we need help getting there and beyond it. I've also had professional help from a shrink for the past seven years. But she wasn't the one who progressed my understanding; she mainly validated what I'd learned elsewhere and has been very supportive. But, despite "only" having social anxiety, there's a ton of ADHD and autistic stuff I can more than just relate to with my executive dysfunction. We're complex creatures.

Gah, this was harder to get from my noggin onto the page than I thought, and it's gone 2am. Just saying that any potential misdiagnosis I may have made (and may still make) along the way is always just tentative, as it's a learning process.

@davep @moi @actuallyautistic @alice Truth be told, the categories themselves are a lot more "gray" and flexible than would make many of us comfortable. As the doctor who diagnosed me explained it, ASD is really just a model that's used to help us understand the person, not a hard and fast thing. If the model is useful, we use it. If not, we find a better one, assuming there even is one. It's just an approximate matching game, not a definite conclusion. No real human being can be reduced to a simplified model, and no one perfectly aligns with the model, either. Living breathing human beings are just too messy and complicated for that.
@hosford42 Exactly. I scrabbled to sort of convey that with the "complex creatures" bit. @moi @actuallyautistic @alice

@moi

As @hosford42 suggests, I suspect that the number of people who mis-self-diagnose is very small.

I would theorise that they fall into three main categories:

1. Hypochondriacs, credulous and highly suggestible individuals. They will often "try out" anything they become aware of (condition, illness, disease) but will likely move on to something else.

2. Celebrities who think it's fashionable to have ND traits. They will use these to advance their career and/or excuse their bad behaviour. Some may actually be ND but that's largely irrelevant.

3. Genuine seekers who want to find out more and learn about themselves. A small number of those will eventually conclude that they are NT but it will almost certainly have been an interesting voyage of discovery for them.

Of those categories, 1 can safely be ignored; 3 is to be encouraged, welcomed and helped towards whatever conclusions they reach.

It's really only 2 that's an issue because they stereotype and distort public awareness. They try to exploit it in various ways, be that autism, ADHD, OCD or whatever. We need to speak out in a way that makes it clear that, for example, Elon Musk is a narcissistic, sociopathic megalomaniac monster who MAY also be autistic.

@actuallyautistic @alice

@ratcatcher I had suggested to my sister-in-law that her youngest son might be autistic and she got very defensive! But one of her other kids is, so it's not that much of a stretch.
There's so much ableism around it; it pisses me off. Even when I would refer to my *own* traits, some people didn't believe me, but I think I either mask fairly well or people assume that all autistic people are high support needs. It's
really unfortunate. @moi @hosford42 @actuallyautistic @alice
@ratcatcher and don't get me wrong; that's not to say that high support needs people are bad, or anything, I just don't think it describes me, per se. @moi @hosford42 @actuallyautistic @alice
@ratcatcher in fact, I've had three autistic roommates who were high support needs, and we all got along extremely well! One of them helped start an anime convention in my city. 😄 @moi @hosford42 @actuallyautistic @alice
@ratcatcher I didn't know I was autistic back then, but perhaps it should've been a clue! Before I had always attributed my autistic traits to my brain injury. But some I recall having in childhood, pre-brain injury.   @moi @hosford42 @actuallyautistic @alice

@CatsWhoCode @ratcatcher @moi @hosford42 @actuallyautistic @alice

I am very aware that I have been ableist in the past, and probably still am to some extent. But I’ve reached the point where if someone says they’re sorry when I say I’ve been diagnosed as ADHD or am sure I’m autistic, I’m a bit taken aback. I’ll then say that there’s no need to be sorry, that knowing this explains a lot and makes it easier to look after myself better whilst also valuing my individuality and my strengths. Then it’s their turn to be taken aback.

@ratcatcher I really don't want to publicly armchair diagnose fascists with personality disorders, either. He also doesn't have NPD or ASPD as far as we know--he has white supremacy, which isn't a mental illness but is harmful enough to him and everyone around him that we don't really need additional words for it, especially to further stigmatize disorders he may not even have

@moi I am diagnosed, but I find the claim that my existence has to be confirmed by a (usually neurotypical) professional problematic. It's okay if you agree with living in the neurotypical world according to its rules, but please don't impose that on your fellow members of the spectrum. I don’t care about NTs, thinking they are Autistic. Fuck them. Their Problem. I care about my people on the Spectrum who think, they may be autistic, because that is totally valid.

@actuallyautistic @alice

@moi @actuallyautistic @alice self-diagnosed autistic people already don't get any state or medical support. Who do you think it benefits if the only autistic people who have access to any sort of community or any support whatsoever are the ones who can afford good healthcare, and the kids whose parents cared and paid attention to their behavior?
Even if we all had access to professional diagnosis, who do you think it benefits if every single autistic person is on a list?