Mastodawn

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992806
https://pmc.ncbi.nlm.nih.gov/articles/PMC8452438/
@alice @actuallyautistic

Dave the Nomad

Jul 28, 2023

@alice
Thanks for putting this together!

There's a study in your doc that suggests RAADS-R isn't accurate enough to predict diagnosis... I found that interesting because I had read the complete opposite, that it was one of the most accurate and valid tests.

I feel a rabbit hole of my own coming on 😀

Thought you might like to add this to your compilation!

"The RAADS-R proved to be highly accurate in discriminating between subjects with ASD and those without a DSM-IV-TR diagnosis and with another DSM-IV-TR diagnosis (sensitivity = 97%, specificity = 100%, test–retest reliability = .987, accuracy = 98.5%,)."

Source:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134766/

@actuallyautistic

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): A Scale to Assist the Diagnosis of Autism Spectrum Disorder in Adults: An International Validation Study

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a valid and reliable instrument to assist the diagnosis of adults with Autism Spectrum Disorders (ASD). The 80-question scale was administered to 779 subjects (201 ASD and 578 comparisons). ...

PubMed Central (PMC)

@nomadave
Sooo RAADS-R seems to have moderate accuracy but needs further research due to concerns over false positives (overdiagnosis) which ADOS, while better, also struggles with

Examining the Diagnostic Validity of Autism Measures Among Adults in an Outpatient Clinic Sample

Previous research has questioned the validity of diagnostic measures for autism spectrum disorder (ASD) among adults. This study examined the correspondence between several measures and clinician diagnosis. We conducted a retrospective chart review ...

PubMed Central (PMC)

Cedric Jul 29, 2023

@alice
Thanks for all that. Very interesting and useful.

moi („• ֊ •„)੭ Nov 8, 2023

@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.

Autistrain Nov 8, 2023

@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

danimo 🏳️‍🌈Nov 8, 2023

@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

Julie Smith Nov 14, 2023

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

Julie Smith Nov 14, 2023

@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!

gri malkin Mar 30, 2024

@moi @actuallyautistic @alice autism is not a mental disorder

Cats Who Draw

Mar 30, 2024

@gri Right, autism is a neurotype!! @moi @actuallyautistic @alice

Nuncio Bitis 🏳️‍🌈 🇵🇸 🇺🇦Mar 30, 2024

@gri @moi @actuallyautistic @alice
It's actually a trait that goes along with intelligence.
Same goes for Tourettes.

Aaron May 27, 2025

@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.

Aaron May 27, 2025

@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.

Kevin Davy May 28, 2025

@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.

Poloniousmonk May 27, 2025

@hosford42

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

Green Roc Thoughts May 28, 2025

@Uair @hosford42 Oh yeah. I kinda wish I could just hide my dx's from snoopy DOGE.

Harshad Sharma May 28, 2025

@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.

Looking for explanations…May 28, 2025

@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.

David Penfold

May 28, 2025

@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.

Aaron May 28, 2025

@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.

David Penfold

May 28, 2025

@hosford42 Exactly. I scrabbled to sort of convey that with the "complex creatures" bit. @moi @actuallyautistic @alice

Nick May 28, 2025

@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

Looking for explanations…May 28, 2025

@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.

Morgan ⚧️1d ago

@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

danimo 🏳️‍🌈May 28, 2025

@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

Morgan ⚧️1d ago

@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?

Miakoda

Nov 9, 2023

@alice @actuallyautistic Looks like I have stuff to read later

haui ☭ 🇵🇸Nov 13, 2023

@alice @actuallyautistic thats insanely good! Thank you so much!

Steph 😈💜🏳️‍⚧️Nov 14, 2023

@alice @actuallyautistic thank you for putting this together! When I first looked into self-diagnosis, I got very overwhelmed by the contrast between how much I thought I needed to know for self-diagnosis versus how much I could easily find. Whenever I searched for information on self-diagnosis all I found was page after page that basically said the same thing: self-diagnosis is valid, but you have to put serious work into it. Then none of them elaborate on what the actual work is.

johne Nov 15, 2023

@alice OMG, that gotta catch 'em all image in there. 🤣 🤣

1840s, they knew diagnosis. Not many lab tests and they couldn't do much for you. But they always knew what they were dealing with. Now it's all lab tests and not listening to the patient.

My doctor and I agree: I have an autoimmune disease. We're both thrilled that I'm keeping it in check with diet and supplements and mental strategies.

But when I'm horribly sick, it's never blamed on the autoimmune. That's another disease "I don't have."

It's perfectly valid because they're not experts on this subject. I don't think so. And I've become something of an expert on the subject of me.

The real thinking about Autism is coming from autistics.

Neurotypicals already have a problem getting out of the way of their biases, and I think it's multiplied in the case of Neurodiverse.

My official diagnosis was not paid for by my health insurance because "there's nothing we can do about it."

I tried to find out if the insurance company would cover a diagnosis, they wouldn't answer. But they did encourage me to seek it, and used to call me two or three times a week to see if they could do anything. No, stop the harassment.

But I couldn't say that because they're supposed to be paying for this. I have to go along with their system. But it was all meaningless.

They didn't pay for it anyway.

@alice @actuallyautistic On the other hand, it's true. I'm over 18. They can't do a single thing for me.

I have an official diagnosis from a specialty place I sought out for their expertise with adults and women. It's about as solid as you could get.

And yet, when I say I'm autistic, no one believes me. It's like they didn't even hear it. So tell me, just what is the medical system doing for me? Nothing.

And that's official.

@alice @actuallyautistic What really helped at work was a doctor's note. No diagnosis was mentioned.

That's all it settled. The ******* and the good bosses were able to work with me. If it wasn't for the jerk I wouldn't have needed the diagnosis!

I didn't need it. When something explains the puzzle of your entire life, there is no doubt.

flaeky pancako Nov 24, 2023

@alice @actuallyautistic thanks for this resource

➴➴➴Æ🜔Ɲ.Ƈꭚ⍴𝔥єɼ👩🏻‍💻Feb 11, 2024

@alice @actuallyautistic
I just took the Female ADHD Test. I got a 62 out of 72, and had to avoid bursting into tears several times.
Meanwhile I was going to take the AQ test, and started answering strong no to several things, but got bored and moves on.
#ActuallyADHD

I remain incredibly frustrated by the fact that "Hyperactivity" being added really screwed with a bunch of diagnosis in the past.

Heather Feb 17, 2024

@alice @actuallyautistic Thank you so much for this. I've just taken three of the tests and been surprised at how clearly the results show me to have autistic traits. I need this kind of thing to give me the confidence to mention autism/autistic traits as I am #SelfDx

Mawhrin Mar 9, 2024

There's a recent appraisal of RAADS-R and the RAADS-14 surveys here:
https://journals.sagepub.com/doi/10.1177/13623613241228329

"Importantly, individuals with a clinical diagnosis of autism and those who considered themselves to be autistic responded to survey items in a very similar way. "

Mawhrin Mar 9, 2024

https://osf.io/preprints/osf/ft73y

There's also the Monotropism Questionnaire (MQ), still very much a research project.

Monotropism has been mentioned elsewhere in the thread by @rabia_elizabeth. @ferrous' parent was one of the original authors of the idea and Ferrous helps keep the idea alive.

(I don't know if the Murray, A who co-wrote the MQ paper is related.)

https://monotropism.org/

Might I also suggest using the word "co-occurring" instead of "comorbid", and "trait" instead of "symptom".

https://www.liebertpub.com/doi/10.1089/aut.2020.0014

OSF

Ferrous Mar 9, 2024

@mawhrin
Aja Murray is not related, as far as we know! Another unrelated Murray writing about autism is Stuart Murray.

Krista Murray is my cousin though, in case that ever comes up.
@alice @rabia_elizabeth

Chris Mills Mar 13, 2024

@alice @actuallyautistic that's pretty nifty! I wonder if I am somewhere on the spectrum, but not so much that it would be meaningful to search out a formal diagnoses. Thank you for sharing your work.

Unabogie has voted Kamala!Mar 30, 2024

I do have a formal diagnosis, but let me say that anyone who spends the time to dig into this rabbit hole the way you have is almost surely also autistic.

When you're assessed as an adult, you've likely acquired so many masking skills that all they can really do is ask us how we feel. And that will very likely match our "dossiers"

David Penfold

Mar 30, 2024

Thanks for that, it's really interesting. Turns out my social anxiety probably isn't due to autism.

Anyia, geeky 🏳️‍⚧️ girl Mar 30, 2024

@alice As someone who's on a number of occasions been told I'm likely "on the spectrum" and also happen to have a large number of ND people in my friendship circle, I took the opportunity to check out the self-tests you've gathered. You know, just in case I was in for a surprise (like I was when you linked genderdysphoria .fyi 😅).

And I'm not surprised that the tests all agree with me - I'm not likely autistic or adhd. Yes, I do share certain common traits, but in my view there are alternate, better reasons that can explain those (being trans a major one, having an engineering type mindset another).

So, thank you for putting together a good resource, even if I ended up using it for arguably the opposite of its intended use :)
💜

Kris Hardy Mar 30, 2024

@alice @actuallyautistic This is fantastic! One thing I've been going through is "is it Bipolar?" I've taken all the same tests for autism as you have, and score high as well on many of them

Cats Who Draw

Mar 30, 2024

@alice Thank you!! I appreciate this so much. I still might like to get a formal diagnosis but it's nice to know that self-diagnosis is valid. A git repository for autism resources = so cool!!! @actuallyautistic

Lira Apr 25, 2024

@alice @[email protected] As someone who was diaged as a kid but left the diag behind for a while to have opportunities I'd be denied, I've come to see myself in late-diag/self-diag folk quite a bit

Y'all have so much of the same experiences I did, just without knowing why for so long

It's wild how much of the trauma, and pretending to be okay I see in y'all.

the Amygdalai Lama Apr 25, 2024

@lira @actuallyautistic @alice
.
I think I had something like an awakening before puberty and when they saw it, they all shut up and my childhood remained some family secret, trying not to jinx it, I guess. 😈 ❤️

Ásthar con té 🍵⛤ (Elle/They)May 4, 2024

@alice @actuallyautistic Thank you! I'll give it a good look. Also, I don't dare to self-diagnose yet, so thanks for encouraging me💖

Kevin Karhan

May 4, 2024

@alice @actuallyautistic also not only are diagnostic criteria extremely sexist and not workibg out for most bit cisbinary dudes but also is access to qualified diagnosticians extremely paywalled and hard.

Bruno Girin May 4, 2024

@alice @actuallyautistic thank you for this, it is a great resource! As I don't know your cat farting gif, count me in the people who now know you thanks to this rather than the gif 🙂

masukomi May 5, 2024

@alice @actuallyautistic
a) thanks for putting this together & making it easy to access
b) 👼💩 I love it when autistic folks focus on a topic and then are like "look at all the cool stuff i found!" ;)

lizzzzard Aug 20, 2025

@masukomi @alice a good infodump is a thing of beauty, right? My husband and I sometimes refer to neurotypical people as "people without *real* interests" because nothing beats the joy of autistics talking about their hyperfixation.