r/AutismTranslated • u/pmmeyour_existential • 5d ago
New study finds online self-reports may not accurately reflect clinical autism diagnoses. Adults who report high levels of autistic traits through online surveys may not reflect the same social behaviors or clinical profiles as those who have been formally diagnosed with autism spectrum disorder.
https://www.psypost.org/new-study-finds-online-self-reports-may-not-accurately-reflect-clinical-autism-diagnoses/90
u/Suesquish 5d ago
Not much of a surprise there. The study shows that professional perception of how affected someone is by autism and the person's perception of how affected they are by autism is quite different. I think many of us could have told them that. They also didn't actually use a control group. Having a group of people who say they have low level traits of autism is not a control group. That would be a group that is clinically assessed as not being autistic.
As for the social behaviour differences between online people who feel they have a significant level of traits and in person autistic people, well yeah, autistic people tend to be online more because it's a safer space where they can find others they may fit in with. Like, you know, every single one of us here.
I'm going to call it a fact (I might be reaching but I don't think I am with my experiences and the hundreds I have seen and read about) that professionals are often ignorant of what autism is and how it presents. Many of us have had the exact same experience, with professionals quickly dismissing our desire to want to explore who we are and consider autism. They often say nah it's not that with no explanation why. Just, no.
There is a reason that autism is commonly misdiagnosed as depression, anxiety disorders, bipolar, OCD and BPD.
I don't feel much trust towards the same group of people who spouted for a long time that only little white boys are autistic. Let's not forget it was believed for a long time that girls could never be autistic. Nah. I will stick with gathering information and understanding from people who actually do know about autism..autistic people.
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u/hysterx 4d ago
Met the same professionnals telling me Im not autistic despite being diagnosed. Within 45 minutes after having met them. They really must be Good at this ! /s
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u/superalk 3d ago
Had a professional dismiss another clinician's assessment because, and I quote "I didn't obsess over cars or trains as a child"
Like, what
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u/Canuck_Voyageur 5d ago
Observation: A LOT of hte prominent people in trauma treatment of PTSD, CPTSD, DID, OSDD... are themselves trauma survivors.
How many ASD researchers have ASD?
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u/kikiandoates 4d ago
I’m a therapist - didn’t realize I was autistic until a few years after my MA program. I think a lot of mental health professionals are autistic tbh, with a special interest in psychology. But even if there are autistic researchers researching autism… do they know they’re autistic? In my MA program we were only taught about how autism presents in individuals with high support needs. I do think there are so many people who are getting missed for diagnosis due to outdated info, and clinical bias.
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u/Canuck_Voyageur 4d ago
Interesting. I feel validated when a professional chimes in, even if I'm wrong. I feel that I'm heard. Seen.
I know that my T. is very perceptive of body language. Even on a zoom session she knows when I'm dissociating, often before I do. Autism often has a factor of being socially unaware; not picking up 'between the lines' not picking up non-verbal cues. How did you overcome this, or did your ASD not present that way.
I'm diagnosed with OSDD. But on the autism screening tests I score moderately high -- typically in the 30th-40th percentile of men diagnosed. I know this is not very meaningful due to the overlaps between trauma, ADHD, ASD and GAD/SA.
I've been searching for tools to help train this deficiency. Between the nubmer of addies and auties who complain about this stuff, having tools to learn how to do it consciously would help.
If I had to make a tool for body langauge, I think I'd do it with cuts from media that illustrate it. Then stop, rewind, and analyse. For 'between the lines' stuff, it would take longer cuts, or more cuts taken from a given series to establish context.
Curiously when someone else describes the body language of someone else, I can figure it out. It's mostly a case of not noticing, not being aware I think.
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u/Geminii27 5d ago
Very true. However, even autism diagnostics themselves have changed notably over time, even recently. It's not as if there's a fixed, formal, 100% repeatable and unchanging diagnosis process/assessment that can be compared to self-reporting, particularly over time.
On top of that, not everyone who is formally diagnosed is going to have access to the self-reporting facilities, or even (in some cases) be effectively capable of using them accurately. Or they may have access, but not want to for any number of reasons.
The worlds of autism research, diagnostics, and symptoms are all still a bit wobbly and nebulous, unfortunately.
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u/chowchowcatchow 4d ago
Absolutely true. When I got diagnosed last year at 36 the psychiatrist, who had an excellent reputation of diagnosing AFAB people, told me that if I had tried to get a diagnosis a decade ago I likely wouldn't have met the criteria. That being said, I have a lifetime of sensory issues, a strong sense of justice that's gotten me fired from multiple jobs, and a host of other things -- so I'm glad I was able to at least put a name to that with my diagnosis.
I wouldn't be surprised in the future that level one autistic individuals, or people who are AuDHD make up a new category/diagnosis within the autism spectrum.
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u/ArtichokeAble6397 3d ago
There is always a new category in the dsm for AuDHD, my therapist specifically asked me which diagnosis I would like on my file. Autism and ADHD entitles me to a lot of government help, but technically is not correct. The other option was something like Neurodevelopmental Delay Syndrome (I don't remember exactly) which recognises how the 2 conditions act with each other and change the presentation of symptoms. It would hopefully make it easier to diagnose people in the future, but she warned me because it's new that some government bodies will likely not know what it is which would make it harder to get help.
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u/manusiapurba 5d ago
Duh? Everyone knows free online tests arent accurate, why else they would be free.
Self dx-ers who do A TON of self researches got sorta pass tho imho imho
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u/Known_Egg_6399 5d ago
My therapist told me “people who are not autistic don’t do research into whether or not they might be autistic. They just don’t.”
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u/Quadruped451 5d ago
I read that a lot. Did they say more than that? Talk about anxiety disorders and so on? I think that autism can feel like a good fit for someone but there could be other better fits that they just don’t know about because they’re not a professional and just learning what they can as they go.
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u/sunnynina 5d ago
As someone who never really dove into clinical anxiety, what are the differentials between anxiety and autism? How does a diagnosing professional decide which to land on, if not both or neither? How do those of us questioning decide which is a better fit (or both, or neither)?
In this magical age of internet resources at most people's fingertips - specifically those who would take these online tests lol - being a professional in the field is not a requirement to knowing about potential diagnoses. Asking questions (of the community and the search bar) and decent reading comprehension is really it.
Edited for rambling and clarity, sorry about that.
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u/Known_Egg_6399 5d ago
From what I understand, there’s still a lot of back and forth among psychologists trying to understand the autistic experience and those who want to stick to “you’re not an 8 year old boy who likes trains, so you’re not autistic.” I think having autistic and ADHD psychologists and psychiatrists emerging is making a huge difference here but it’s just beginning.
As far as anxiety, from what I understand is that anxiety often presents as a comorbidity of autism, so not everyone who is anxious is autistic, but all autistic people experience some form of anxiety.
I’m not a professional by any means, I just know that depression and suicidality was my “diagnosis” for about 20 years and when I finally learned about autism and sought professional help, it was a much better fit and my understanding of myself and my struggles made so much more sense.
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u/Known_Egg_6399 5d ago
This was my experience but the opposite, I thought my whole life I was depressed bc I was just made wrong. Turns out I’m made just fine, I just have a bazillion more processes running in my brain. I know for example thousands of American women have been misdiagnosed with BPD who are in actuality probably on the spectrum somewhere.
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u/Quadruped451 5d ago
I guess that shows how hard it is, and I have read it is harder for women. I am glad you've found what you needed.
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u/Known_Egg_6399 5d ago
Personally, despite the similarities of ADHD and autism, I genuinely feel like there are more people with ADHD than with autism. Again, I’m not a scientist or licensed professional, but I joke with my sisters about them being AuDHD and me being OCD/autistic. I think a lot of it honestly is that online, most people are not autistic, they are attention-seeking and this makes it harder for allistics to take autistics seriously. Thus the eVeRyOnE iS a LiTtLe AuTiStIc bs.
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u/Autisticrocheter 5d ago
Yes! The ones who post on Reddit and are like “here’s numbers I got on online tests. Tell me if I’m autistic” absolutely do not though
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u/Weird-Drummer-2439 5d ago
They're not some definitive thing, but they are information you can use to inform a self dx. They just definitely should not be the only piece of information. But autists tend to be autistic about autism and take every test watch every video and read every source they can find on the subject.
I tend to be charitable and assume people posting those results are just starting that journey and got confronted with that test result and need help sorting it out.
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u/GoGoRoloPolo 5d ago
Tests are what started my deep dive into autism research. I saw a post that made me go "hmm" so I looked up a quiz. Autistic score. Found another one. Autistic score. Shared with my friend who works in an autism unit and she sent me the RAADS-R. Autistic score. Did I self diagnose on those alone? No. Was it what kicked off all day intense research sessions into autism for the next few weeks? Yeah. 1 NHS waiting list and 3 years later, I have been diagnosed by a team of specialists. I fully support self diagnosis by those who have done the research.
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u/yevvieart spectrum-self-dx 5d ago
yep. i've researched for about a year straight, with the most intense hyperfixation i ever had until i finally were like "uh maybe" but i REALLY didn't want to be. i had meltdown after meltdown, crying on the floor and freaking out because i really didn't want it to define me
been couple years since then and yeah, man, it only got more clear from there as i gather more and more information.
formal diagnosis is unavailable to me but the knowledge brought a lot of clarity and strategies we could implement at home to turn me from a broken shell into a slightly functional adult so self-dx helped either way to make my life less of a hell
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u/idea4name 14h ago
I'm not autistic (I never felt like others had been given a script and I didn't get one), but I've been watching every video on autism for the last three days because it's just so damn comforting and interesting to come back to a community who has different ways of communication than majority of people as well.
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u/Known_Egg_6399 5d ago
Maybe this is just my state’s inadequacy showing, but when I was trying to get an appointment for assessment with the LITERAL ONLY doctor who diagnoses adults in my state, they told me they didn’t have a test specifically designed for adults. They have one assessment method that is generally given to children ages 5-10, and that would be my experience.
It’s almost like they should listen to autistic people about their autistic experiences 🥹
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u/cosmos_crown 4d ago
i actually need to sit down and read the data but from the article
The researchers compared three groups of adults. One group included 56 individuals who were diagnosed with autism after undergoing in-person clinical evaluations. The second group consisted of 56 people recruited online who reported high levels of autistic traits using a standard survey. A third group, also recruited online, reported low levels of autistic traits and served as a comparison.
so did the second group say they thought they had autism, or did they just report 'high levels of autistic traits' on the survery?
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u/Canuck_Voyageur 5d ago
For me one of the critical points was comparing the social interaction issues of auties with those who have GAD or other anxity issues.
I suspect that screens are more useful for finding negative results.
E.g. if I get a high BAP score I might have ASD or GAD. If I have a low score, I am very likely to not have either.
This opens the door of surveys to distinguish between ASD and, say GAD
There are a lot of reasons that people may be reluctant participants in social interaction.
CPTSD, ADHD, ASD, GAD all have overlaps with each other.
A screening test that could distinguish between them would save a ton of time. I know that many people with DID (CPTSD on steroids) take an average of 6 years to get a correct diagnosis.
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u/tallkitty 1d ago
Hey if you're reading this and have done online surveys and have suspected you're autistic but haven't felt sure that you're not making it up, you are not making it up. Don't let this headline support that idea, it's not talking about you.
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u/TLJDidNothingWrong 5d ago
Comment from the other post: