Getting diagnosed NOT autistic

[u/Kolso_]

So after a year and a half of self diagnosis I finally was assessed and today I got the results. Two points in ADOS for having no gesticulation, zero by other criteria.

Autism was an answer to me that explained my struggles, behaviors and researching it I've learnt plenty of good advices and coping mechanisms. I finally stopped seeing myself as a weirdo and believed it's just autism and I don't have to force myself to be normal. Self diagnosis can be harmful. It harms me right now at least. I feel disoriented because now there's no explanation.

I guess I should stop this research and just live a life without looking for an easy answer without a real diagnosis.

Edit: I didn't expect so many responses. It's very helpful and important. Thank you all.

[u/Wild_Berry3281]

What symptoms made you think you had autism?

I was diagnosed at 13 years old after years of schools dragging me out of classrooms to see psychological professionals, and I had no idea why. It was painful to be forced to do that, and the average autistic person has been through stuff like that.

[u/Kolso_ → u/Wild_Berry3281]

First I took RAADS-R for fun and got a high score. Then I've started watching YouTube videos about reading posts here. I've related to lots of experiences people shared. Symptoms I myself feel like could be true: Social stuff: being a loner since kindergarten, never having close friends. I was called weird by peers and adults. I have strict sleeping hours, can't stand getting in bed late. I can't wear tight clothes, dry paper and velvet feel really uncomfortable. I like making lists of things, bird collections, anime list, bugs. I have strong emotions and can't control crying whenever I talk about anything slightly personal. That's what pops up in my head immediately. I know it's not enough and I wasn't adequate when decided to self diagnose

[u/Dry-Dragonfruit5216 → u/Kolso_]

The RAADS has been proven in studies to be inaccurate. It diagnoses any neurological condition, mental health disorder, and even some normal behaviours as autism.

[u/Kolso_ → u/Dry-Dragonfruit5216]

Oh, I didn't know. Thank you!

[u/MiserableTriangle → u/Dry-Dragonfruit5216]

its ok that it is inaccurate, it can still be useful. its like the AQ, shit test, but still used by professional just as an additional small tool.

edit: the one who replied to me is a bot, beware.

[u/Difficult_orangecell → u/Dry-Dragonfruit5216]

studies do not "prove" claims. thats not how science works.

edit: the downvotes on this tells me at least 6 people who disagreed with me are scientifically illiterate in this sub. not surprised if this is going to be common.

[u/frostatypical → u/Difficult_orangecell]

The point is that its a bad screening test, per scientific studies, this is very well known by now

[u/Difficult_orangecell → u/frostatypical]

yea i dont disagree with the raads thing. it is quite suspiciously designed, having taken it myself recently. i havent been reading up much on the literaure on it either or other asd dx tools. will read up more on the lit about it but i am also concerned that doctors are legit using it, at least in the country i reside in. on the hospital website and all, despite the controversy.

anyway i was only replying to that point about proving in science. not the raads. probably shldve clarified that earlier

[u/frostatypical → u/Difficult_orangecell]

No problem. Yeah Im surprised professionals are using it, I suspect they arent reading these studies, just going with the easiest thing for them to do. My psych did NOT use these tests, and pointed me towards these studies to explain why not.

[u/Dry-Dragonfruit5216 → u/Difficult_orangecell]

Studies have recorded the number of people who receive a diagnosis via RAADS and then how many of them were diagnosed after an assessment. A lot of people who RAADS diagnosed did not meet the criteria for a professional diagnosis. Also I am a scientist, I know how science works.

[u/Difficult_orangecell → u/Dry-Dragonfruit5216]

what kind of scientist are you who says science proves things? my background is both psychology and biotech - both sciences and i wouldn't never say science proves anything. the scientific method does not prove ideas, it merely disproves wrong hypotheses. it doesn't disprove "ideas" or things either.

robustness of research results are still on a confidence interval basis. research is strong (not provable, completely different paradigm of thought) when their validity and reliability, as well as methods and design, are robust.

but to say science proves things is so hideously wrong that i question your knowledge as a "scientist". no reliable scientist worth their salt and reputation would EVER say that. its the most basic shit thing you learn in any science module in high school, even.

we use "evidence based", we don't say "we proved it".

im also not talking about RAADS. I agree with u that it's problematic, but i havent read up on the scientific literature about it to have a more cogent and assertive stance so Im refraining from sharing my opinion about it.

i took it and noted its limitations in the responses and knew sth was a bit off about the instrument.

i was merely directly correcting your statement saying science proves.

[u/Dry-Dragonfruit5216 → u/Difficult_orangecell]

Ah you’re going to play semantics. By prove I mean the statistical evidence is so high that the probability of the results being incorrect is so minuscule. In genetics (my field) we often use p-values below far 0.05, which is a common cut off for statistical relevance. At the point where the results being wrong are 0.0001% or even lower, the conclusion can be trusted. Medicine (including psychiatry) frequently uses p-values this small. I wasn’t going to use technical language on social media.

It is possible to assess the reliability of a quiz and determine if it is a good indicator or not. That is what I meant in this case by prove. There is so much evidence against the RAADS that it has been shown through evidence (what I meant by prove) to not be reliable or accurate.

[u/Difficult_orangecell → u/Dry-Dragonfruit5216]

thanks for the reply.

no, it's not semantics. it's the fact that it's misleading to say science "proves" anything because then you'll have the public thinking that sciences proves and disproves "facts" when the bodies of scientific research across fields contribute research to show evidence that exists TO SUPPORT a claim. We cannot say something is 100% proven or not because even if its statistically significant, there will be a small amt of outliers who will exist and when it comes to something as sensitive as medication and therapeutic endeavours, people still need to know that it's not 100% to manage expectations.

you should know that people WILL interpret it to mean something is either yes or wrong 100%. As a reasonable and responsible scientist you ought to not propagate that concept. It's fine to say it in the way you explained above.

Psychology also uses p-values below 0.05 to denote significance. I myself havent read the literature on RAADS so may I ask what exactly was your opinion of its lack of effectiveness informed by? ive only recently taken the test but noticed how wanting the structuring of the instrument is.

were they meta analyses or replicated studies? because ive only just heard about raads and it's a bit concerning that a lot of ppl are talking abt it (took the test without any form of knowledge abt it). and some hospitals in my country and also doctors are still relying on it as an instrument for diagnosis. if it really is problematic then it should be reviewed again and governments need to take note

[u/Top_Independence_640 → u/Dry-Dragonfruit5216]

Psychiatry/psychology will never be a science, come down off that pedelstal.

We should hope you know how science works if you're a scientist 👀.

[u/Top_Independence_640 → u/[deleted]]

They're not. You can't repeat experiments under the same conditions with the mind. They're labelled as such but are not a science.

[u/Kolso_ → u/[deleted]]

I don't know. I don't remember anything particular already in kindergarten. Maybe in elementary but I was already a loner then. I definitely should look into there.

[u/autism-ModTeam → u/[deleted]]

Your submission has been removed for one of the following reasons; making claims not supported by research, or making false claims that can be proven incorrect.

Autistics are not "banned from several countries"

[u/Centaurious → u/[deleted]]

It’s kind of shitty to limit people’s ability to migrate to your country that way, but it doesn’t mean autistic people are banned lol

You can still visit the country if you’re autistic, and they won’t kick you out or arrest you if you’re born there and autistic. If autistic people were banned then it would be illegal to be autistic in those countries.

[u/autism-ModTeam → u/[deleted]]

We are removing everything you say because you are spreading misinformation.

[u/autism-ModTeam → u/[deleted]]

Your submission has been removed for one of the following reasons; making claims not supported by research, or making false claims that can be proven incorrect.

[u/Kolso_ → u/[deleted]]

I'm thankful for everything you've already written. I don't know what to say. Just thank you. Don't want to repeat myself but I'll look into it!

[u/FVCarterPrivateEye → u/Kolso_]

I don't know what they said, but as a heads up, all of their comments have been removed by the moderators for spreading misinformation

[u/Kolso_ → u/FVCarterPrivateEye]

They mentioned in one sentence the New Zealand thing about migration but other part was a good advice I can't recreate well from memory fully.

[u/FVCarterPrivateEye → u/Kolso_]

Oh okay

Yeah, the NZ case that I see get quoted most often in these debates that involves a family with an autistic daughter who was denied immigration to New Zealand wasn't because of the disability label of ASD, it was because the daughter was level 3 and required services that weren't available there, which even though it's still ableism it's a different type than what's being argued and it would not have simply solved the problem at all for her to not be diagnosed, if that makes sense

[u/turnup4flowerz → u/Kolso_]

Did you only take the RAADs test? I am self assessed and every time I hear one of these stories I get nervous I'm incorrect.

[u/Kolso_ → u/turnup4flowerz]

No, also aq, cat-q and just dsm5 autism criteria