alice ,
@alice@lgbtqia.space avatar

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


Update: I've added a lot of new stuff to the project.


@actuallyautistic

fanf42 ,
@fanf42@treehouse.systems avatar

@alice @actuallyautistic

And well, there's like a very persistent pattern in all these self assessment test results 😅
Not as high as yours, but still in the "yes, lol" side of things

fanf42 ,
@fanf42@treehouse.systems avatar
alice OP ,
@alice@lgbtqia.space avatar

@fanf42 @actuallyautistic @aral you are so welcome 🙂

masukomi ,
@masukomi@connectified.com avatar

@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!" ;)

alice OP ,
@alice@lgbtqia.space avatar

@masukomi @actuallyautistic you're welcome, and me too 💜

plume ,
@plume@blahaj.zone avatar

@alice @actuallyautistic To me, it's not even a question of validity. It's necessary! If I hadn't suspected mine, it would've never been diagnosed, I've gotten so good at masking that many psychiatrists and therapists missed the OBVIOUS autism in the room when talking to me.

It took me wondering what the fuck was wrong with me and hours of digging around to come to the conclusion that it may be autism. I met with a therapist who knows her shit, talked to her about why I questioned it and she was like: "Oh. Yeah, it's actually quite obvious with you, can't believed no one noticed." Yeah. Me too.

Official diagnostic in the works now. This could be life changing for me. Still though, I'm resentful at the failure of the medical system and all of the people who failed, or didn't even care to see the obvious signs...

brunogirin ,
@brunogirin@mastodon.me.uk avatar

@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 🙂

kkarhan ,
@kkarhan@infosec.space avatar

@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.

asthargf ,
@asthargf@retro.pizza avatar

@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💖

sal ,

@asthargf @alice @actuallyautistic Don't worry literally nothing happens at all from self identifying that way

lira ,
@lira@blahaj.zone avatar

@alice @actuallyautistic 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.

punishmenthurts ,
@punishmenthurts@neurodifferent.me avatar

@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. 😈 ❤️

catswhocode ,
@catswhocode@mastodon.art avatar

@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

nonlinear ,
@nonlinear@mastodon.nz avatar

@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

davep ,
@davep@infosec.exchange avatar

@alice @actuallyautistic

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

unabogie ,
@unabogie@urbanists.social avatar

@alice @actuallyautistic

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"

ambientspace ,
@ambientspace@cloudisland.nz avatar

@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.

mawhrin ,

@alice @actuallyautistic

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. "

alice OP ,
@alice@lgbtqia.space avatar

@mawhrin @actuallyautistic thanks for sharing! 💜

I'll add that as supporting evidence next time I make an update to it.

mawhrin ,

@alice @actuallyautistic

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

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

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

callunavulgaris ,
@callunavulgaris@mastodon.scot avatar

@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

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@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.

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

alice OP ,
@alice@lgbtqia.space avatar

@AeonCypher @actuallyautistic there needs to be better differentiation between question sets and diagnostic criteria for different subtypes within diagnoses like ASD and ADD/ADHD, especially where they often present differently between genders, cultures, etc.

I believe that we have the issue where a lot of these DSM entries are still going off US-male-centric views and/or outdated research.

Dr_Obvious ,
@Dr_Obvious@chaos.social avatar

@alice @AeonCypher @actuallyautistic
Did you considder to include the monotropism questionair into your list?
I glimpsed over it again and didn't saw it.

alice OP ,
@alice@lgbtqia.space avatar

@Dr_Obvious @AeonCypher @actuallyautistic yes, a few people have brought that up, but I haven't had a chance to read enough on it or update the project yet.

Dr_Obvious ,
@Dr_Obvious@chaos.social avatar

@alice @AeonCypher @actuallyautistic
Alright. I guess it is really debatable, because it isn't included in typical manuals yet afaik.
But it is really nice to do a test that isn't full of questionable ideas.

Did you try it out yourself yet?

alice OP ,
@alice@lgbtqia.space avatar

@Dr_Obvious @AeonCypher @actuallyautistic not yet. I took a quick look at it, but that project has been on the back-burner for a while due to other things needing attention in my life.

Dr_Obvious ,
@Dr_Obvious@chaos.social avatar

@alice @AeonCypher @actuallyautistic
I guess you will like it :). But it isn't running away. Everybody has to organize their spoons to their needs.

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@Dr_Obvious @alice @actuallyautistic
We could make out own...

Dr_Obvious ,
@Dr_Obvious@chaos.social avatar

@AeonCypher @alice @actuallyautistic
Sorry, I don't get you.

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@Dr_Obvious @alice @actuallyautistic

@Dr_Obvious @alice @actuallyautistic

I guess I could go into details. Here's how.

  1. Create a huge ilst of questions. More than we need, but like 100. This is so that we can have questions that we agree are more representative and don't have false assumptions.

  2. Have ~1k people take the test, and the other tests.

  3. Have people self-report on self-diagnosis and official diagnosis.

  4. Get the inter-rater reliability of the questions, and also the perform a per question and multi-question test of proportions.

  5. Find the smallest set of questions with the maximal amount of information.

  6. Report on the sensitivity and specificity of the test.

  7. Show the cross test reliability of the tests, to demonstrate that the tests are measuring the same thing (Convergent Validity).

  8. Give comparative analysis to identify the relative predictive power of the test.

  9. Write the results.

  10. Publish.

Bonus: Perform a Factor Analysis on our test to identify the factors that define ,, repeat on the other tests, identify the factors that are measurably different.

Dr_Obvious ,
@Dr_Obvious@chaos.social avatar

@AeonCypher @alice @actuallyautistic
I don't feel competent in that area. But I agree that a reevaluation of criteria for ASD with respect to the people relating to ASD, would be beneficial.
I think monotropism was intended to do that.

pathfinder ,
@pathfinder@cutie.city avatar

@Dr_Obvious @AeonCypher @alice @actuallyautistic
My understanding is that the monotropic test, isn't so much to identify autistic's as the monotropic mindset. Which, whilst really common amongst autistic's, isn't exclusively so.

Dr_Obvious ,
@Dr_Obvious@chaos.social avatar

@pathfinder @AeonCypher @alice @actuallyautistic
You are right. But if I remember correctly the idea of monotropism is to explain great part of autism with a neutral perspective.

pathfinder ,
@pathfinder@cutie.city avatar

@Dr_Obvious @AeonCypher @alice @actuallyautistic
It certainly explains so much about me. It and the intense world theory.

PatternChaser ,
@PatternChaser@mas.to avatar

@pathfinder @Dr_Obvious @AeonCypher @alice @actuallyautistic

Here's a link to an article I found interesting: "Me and Monotropism: A unified theory of autism — By Fergus Murray (science teacher, writer and 'autist'), on single attention and associated cognition in autism"

https://www.bps.org.uk/psychologist/me-and-monotropism-unified-theory-autism

pathfinder ,
@pathfinder@cutie.city avatar

@PatternChaser @Dr_Obvious @AeonCypher @alice @actuallyautistic
Thanks. Will have to look at later. 😊

alice OP ,
@alice@lgbtqia.space avatar

@AeonCypher @Dr_Obvious @actuallyautistic

5.b. check the stability of the test over repeated attempts.

wakame ,
@wakame@tech.lgbt avatar

@alice @AeonCypher @Dr_Obvious @actuallyautistic

That sounds like... 50x as scientific has the test that Baron-Cohen doodled down in a free minute.

alice OP ,
@alice@lgbtqia.space avatar

@wakame @AeonCypher @Dr_Obvious @actuallyautistic

"We can rebuild [it]; we have the technology."

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@alice @wakame @Dr_Obvious @actuallyautistic

Someone organize gathering a committee to make questions.
Someone organize the question drive.
I'll do the analysis, and find a PHD to work with to write the paper.

(BTW, I bet we could also ask ADHD questions, and find differential validity).

alice OP ,
@alice@lgbtqia.space avatar

@AeonCypher @wakame @Dr_Obvious @actuallyautistic I'm game. I'd love to get a single, good, test that can help with ASD/ADD diagnoses and especially help people tell the difference.

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@alice @wakame @Dr_Obvious @actuallyautistic

We should coordinate on how to come up with a set of initial questions. Like, how do we get the largest set of initial questions?

alice OP ,
@alice@lgbtqia.space avatar

@AeonCypher @wakame @Dr_Obvious @actuallyautistic

How about starting with a collection of the diagnostic "I statements" from the diagnostic tests in my self-dx project (and any other good tests with solid research behind them)?

We can ask people to not only answer the questions, but to also rate how useful they feel that statement is as a differentiator.

alice OP ,
@alice@lgbtqia.space avatar

@AeonCypher @wakame @Dr_Obvious @actuallyautistic

We should capture self-reported age-range, gender identity, and self/formal diagnosis status for ASD, AD(H)D, MDD, (G)AD, and possibly OCD. Their traits all have some overlap (and everyone is depressed and anxious).

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@alice @wakame @Dr_Obvious @actuallyautistic

We could probably start with a simple survey just asking people with ADHD ASD, what questions they think would describe their experiences

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@alice @wakame @Dr_Obvious @actuallyautistic
Are there any survey software systems that are trustworthy and free/affordable?

alice OP ,
@alice@lgbtqia.space avatar

@AeonCypher @wakame @Dr_Obvious @actuallyautistic Google Forms are free, but trustworthiness is debatable.

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@alice @wakame @Dr_Obvious @actuallyautistic ? https://blocksurvey.io/ ?

I don't know. This is probably a question for the wider Fediverse.

alice OP ,
@alice@lgbtqia.space avatar

@AeonCypher @wakame @Dr_Obvious @actuallyautistic interesting. I'll take a deeper look when I get a moment.

For now, it's taco time! (the food, not the disappointing fast food place)

AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@alice @wakame @Dr_Obvious @actuallyautistic It could be another thing... 😊

olistan ,
@olistan@hostux.social avatar
AeonCypher ,
@AeonCypher@lgbtqia.space avatar
AeonCypher ,
@AeonCypher@lgbtqia.space avatar

@olistan @alice @wakame @Dr_Obvious @actuallyautistic
OMG, they have so many things!

ginsterbusch ,
@ginsterbusch@kosmos.social avatar

@alice @AeonCypher @actuallyautistic The same goes for the ICD.

The reason why I am diagnosed with HKS (Hyperkinetic Syndrome, what nowadays is called ADHD) is, because of those stereotypes. Apparently I wasnt "autistic enough", ie. my masking was already that good.

Also, almost all of those tests and dx criteria ignore the rest of the circumstances, eg. pre-existing handicaps.

1/

ginsterbusch ,
@ginsterbusch@kosmos.social avatar

@alice @AeonCypher @actuallyautistic

In my case, its being strongly sight-impaired from birth. That leads to different, "unexpected" behaviour, because you already are REQUIRED to cope with your environment. Ie. its an automatic adaption to life. And thus "failing" the stereotypes and "criteria" that orient themselves on such crude ways.

I wonder how many people are just dxd wrong or not at all because of pre-existing conditions.

2/

ginsterbusch ,
@ginsterbusch@kosmos.social avatar

@alice @AeonCypher @actuallyautistic Gotta be quite a number of underreporting in the fancy statistics (German really got better words for this: "Dunkelziffer" - dark number / figure).

juliasnz ,
@juliasnz@fandom.garden avatar

@alice @AeonCypher @actuallyautistic plus I noticed they acknowledge a Fascination for specific topics but make no allowance for what happens if your fascination is something like behavioral science or neurochemicals or the deceptive practices of the marketing industry... like a person can be highly interested in a subject not for the usual reasons or at the usual casual intensity of a non-divergent to the degree that what is categorized as a typical or defining "autistic" trait ISN'T present... only because the autistic person is ironically fixating on what non autistic people do 🤣💖 hmmm! 🤔

jan ,
@jan@bsd.cafe avatar

@alice @actuallyautistic did some tests from your site.....always Highscores. This isn't good news I suspect.

alice OP ,
@alice@lgbtqia.space avatar

@jan @actuallyautistic finding out more about how your brain works is always good news 🙂 if nothing else, it helps explain your lived experiences better.

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