r/science • u/mvea Professor | Medicine • 5d ago

Neuroscience 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/
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u/alinius 5d ago

No, it is more complicated than that. People do not seek professional help unless they think something is wrong. I would wager that the majority of clinical autism diagnosis start with an informal self assessment. Treating self-diagnosis as invalid would discourage people from seeking help. So, from a Reddit perspective, it is better to treat self-diagnosis as valid to avoid gatekeeping.

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u/Quillspiracy18 5d ago

"Informal self-assessment" and "self-diagnosis" don't mean the same thing.

Everybody who goes to any doctor for anything has assessed themselves and identified a problem. They may even think they know the cause of the problem. That's fine, and it's the whole basis of the logistics of medicine.

"Self-diagnosis" is claiming a clinical label with no input (or even negative input) from a professional. It is arrogant and it dilutes public perception of illnesses.

Think about how offensive it would seem to sincerely claim you have cancer without even asking a doctor about it. If people found out, you'd be a social outcast, because most people know how brutal cancer is.

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u/demonicneon 5d ago

Yeah. Guy on a course I’m on, really nice guy, but he says he has adhd and the college give him adhd support. Hes self assessed. Meanwhile I’m waiting to be seen by the autism/adhd team, after an assessment by my GP, to be properly diagnosed for years and I’m given no support because I’m honest about it - no I don’t have a diagnosis, I may have one of these things going on with me but I don’t know and I can’t claim to know. 

Every time he mentions it I’m like but you’ve not been diagnosed …

It ticks me off cause I’ve been struggling with MH issues for years and been bounced around different diagnosticians to the point I had given up until my current girlfriend pointed stuff out to me and pushed me to get seen again, and hadn’t considered or even known that stuff I thought was normal was not really normal. 

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u/cortesoft 5d ago

Doesn't this kind of explain why so many people don't get formally diagnosed? You have been trying to get diagnosed for years and have been unable to get the support you need, while someone who just declared themselves got help immediately.

Seems to me the smart choice is to self diagnose.

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u/demonicneon 5d ago

I can’t access medication without a diagnosis. Self diagnosis of adhd is largely pointless. The whole point for me is to get medicine to treat the condition so I can function the same as other people (if I do have it).  

I also don’t believe I should have to lie to access help. Nor should a lie allow you to access help. 

Unless you’re diagnosed I’m sorry but you simply “might” have it, you cannot claim to have it. 

The help they get is basically just leniency. I think that’s wrong. Anyone could claim they have it just to get leniency for time keeping, or later hand ins etc. 

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u/Elemteearkay 5d ago

Self diagnosis of adhd is largely pointless.

Seems to be helping that person you mentioned, and enough for it to make you feel bitter towards them for not depriving themselves of said help like you do, too.

The help they get is basically just leniency. I think that’s wrong. Anyone could claim they have it just to get leniency for time keeping, or later hand ins etc. 

It sounds like you've internalised some ableism, I'm afraid.

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u/cortesoft 5d ago

Self diagnosis of adhd is largely pointless

If you truly believe this, then it wouldn't matter to you at all that someone self diagnosed. It doesn't matter, so why don't care?

The rest of your comment contradicts this, though, as you then list all the ways it is not pointless.

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u/kindnesskangaroo 5d ago

You can’t get SDS support without a doctor’s letter submitted to the college to show your clinical diagnosis. So either he is lying about being self-diagnosed or you are lying about him self-diagnosing.

I know this because I have officially been diagnosed with ADHD and received student support services. They wouldn’t give them to me without a signed letter from my doctors confirming my diagnosis.

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u/demonicneon 5d ago

He is self diagnosed and is adamant that he’s never seen a doctor in relation to adhd. I’m not lying and neither is he. 

I dunno what to tell you, I think it’s crazy too but our student support services provide him with accommodations and help. I don’t know the full extent of the support given but he does get some sort of support and regular meetings. I didn’t think this would be possible but they seemed to have bent the rules. 

Our college is on a major neurodiversity awareness kick at the moment due to our student president. 

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u/Elemteearkay 5d ago

If you need support, then you should access that support, regardless of whether you have a formal diagnosis or not.

Don't martyr yourself and become jealous of those who don't.

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u/ChiAnndego 5d ago

It's more akin to having a giant tumor growing out of your face and telling people you think it's probably cancer, but you don't have enough $ to get it checked out, and anyways, all the cancer doctors are booked out 3 years and they only take patients that meet a certain demographic where cancer is most common.

The takeaway from this study should be that we need more clinical testing available, not that people that have symptoms should be gatekept. Women and "other non-typically autistic" demographics are falling through the cracks.

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u/Quillspiracy18 5d ago

As I said, "I think it's cancer" is fine. "I have cancer" is not.

The takeaway is that more clinical testing should be available and that people with or without symptoms should be gatekept from labels they haven't been assessed for.

Systemic failures to provide care don't entitle you to decide you have a disorder.

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u/janitordreams 5d ago

I completely agree. That is how I went about it until I was formally diagnosed. There is a difference between self-diagnosing and self-suspecting. Self-suspecting is fine. Self-diagnosing is not.

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u/ChiAnndego 5d ago edited 5d ago

Here's the problem with that - a lot of people are excluded from being able to be assessed due to money or access. Being able to put a name to what they are experiencing helps immensely in figuring out coping strategies and accommodations to be successful in life. It's not like someone didn't have autism before an assessment and suddenly has it after. *******They had autism the whole time******, it's just that before diagnosis, they didn't have the name and tools to address challenges and after they may have more access.

Why should people be denied accommodations and tools just because our healthcare system sucks? Why gatekeep access for disabled people just because they don't have an extra $3000 lying around or their parents are no longer alive to give childhood info?

The truth of it is, the reason "everyone is autistic now" is because a whole lot of people pre 1990s were given other (wrong) diagnosis that really harmed them and the real issue is coming to light for some who are able to get a diagnosis.

Just because you don't want to see a problem doesn't mean it's not there.

It's like accusing the person with the giant face tumor of faking an illness, and denying them general supportive care, just because the doctor hasn't done the testing yet.

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u/Quillspiracy18 5d ago

I'm not sure why you keep repeating this stuff about lack of access, and I'm not sure why you're trying to suggest that I don't think it's a problem. That is not an excuse to decide you are qualified to assess yourself for a mental issue.

You categorically cannot assess your own mental state objectively and the public can't be expected to believe that you've "done your research" if there is no barrier to entry for that statement.

No one is accusing people of faking their issues. That tumour on your face might be a benign birthmark, it might be a cyst, it might be a big bag of pus from an infected tooth, it might be a rare bacterial disease, it might just be severe swelling from an injury.

All of those are real issues that require different treatments, none of them are helped by the patient proudly claiming "I have cancer!" with no professional assessment.

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u/ChiAnndego 5d ago edited 5d ago

It's not that I feel that I'm qualified, it's just that for some of us, it's readily apparent to EVERYONE ELSE as well. And I have been dx with developmental disorder, but just didn't have a name because "autism" wasn't a thing for girls. Apparently, having an IEP because you are "pathologically gifted" with "ocd NOS" was all we got.

There's no treatment for autism, just accomodations to help people function. So, do you ask someone in a wheelchair for their diagnosis before allowing them to use a ramp at work? How about a record of a vision test for a blind person before you let them use a text reader for their job?

But somehow, unless you have the papers, it's too much to ask to be able to wear earplugs, and that my desk is not under the overhead lights or the air conditioner vent?

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u/Tychovw 5d ago

Self diagnosis is really important for people who can't go to a professional. I have read many stories of people finally figuring out what they had and they managed to make their lives better.

Saying self diagnosis is arrogant or wrong is just ableism. And comparing it to cancer is just completely wrong, since cancer isn't a mental condition.

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u/MainlyParanoia 5d ago

It’s not ableism. What absolute insanity. I can not be faffed to rehash all their selfish arguments self dxers have but they all amount to “I know better than the doctors anyway”. They don’t. These are the people that seem to be the loudest in the online communities and do the most damage to people who actually have autism. It’s embarrassing for them and us. If you suspect you might have autism that’s one thing. But telling people you’re self diagnosed is just a weird mix of arrogance and ignorance.

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u/starm4nn 5d ago

I was formally diagnosed roughly at age 4 and most of the social support system peters out shortly after high school.

I have no idea how much it costs for an adult to get diagnosed but it is absolutely not something that will give good returns.

I would however recommend ADHD diagnosis since at least you can get meds for that.

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u/MainlyParanoia 5d ago

It’s no exaggeration to say I would not be alive today if I had not followed through on getting a diagnosis. It has provided me with a name for a lifelong problem and let me access regular psych care to learn to live with rather than fight my natural ways. It pulled me out of fighting with near constant suicidal ideation. It let me access support systems provided by our country - support worker, OT, home help. My adhd dx on the other hand let me access meds. Both have been helpful but the asd dx saved my life.

Asd was not a dx for people like me in the 70’s or 80’s when I grew up. I’m grateful I did the hard yards and finally sourced assessments to determine what I was dealing with. I’m not saying it was easy but it’s way easier than people like to make out. And not as expensive as people like to go on about.

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u/starm4nn 4d ago

What country are you from? In my experience every US program will just put you on a waiting list.

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u/Quillspiracy18 5d ago

Mental issues are crippling and end lives. Why is it acceptable to you to circumvent the diagnostic process for mental health or developmental issues, but not physical ones?

All those people who "figured themselves out" don't need the label to recognise that they have issues. They can do pretty much everything they're already doing to make their lives easier without claiming to have disabilities they haven't been assessed for.

Furthermore, there are many people in self-diagnosis communities who shun diagnosis altogether, who claim the DSM/ICD are completely inaccurate. So what does autism or ADHD or OCD or whatever even mean to those people? It means whatever they want it to mean. Yet those people are still valid, if we're tossing licenced professionals out the window.

It's a black hole of illogic dressed up in socially just language and it will end in genuinely disabled people losing crucial support because "It's just a difference!".

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u/alinius 5d ago

No, they are not the same, but one follows the other. The results of any self-assessment will, by definition, be a self-diagnosis. If I injured myself, looking at the injury is self-assessment. If I decide it is a minor cut, that is a self-diagnosis. Applying basic first aid at home would be self-treatment.

I am not aware of any official list of "clinical labels" that can or can not be claimed via self-diagnosis.

If someone goes to a medical professional with a self-diagnosis, the professional is going to ask for information explaining how the patient reached that conclusion and then evaluate the information objectively. What they are not going to do is assume the self-diagnosis is wrong just because it was made by a non-professional. If professional health experts can not judge the validity of a self-diagnosis without getting details, I am pretty sure most random Redditors can not either.

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u/grillcheezi 5d ago

This was how it went for me. I started learning about neurodivergence when a family member discussed potentially having ADHD. This led me to information about autism which clicked with me more than I expected, so I went to a professional to figure it out.

Turns out the “quirky” behaviors that run in the family have diagnosis codes.

I do not think online tests should be used to officially confirm anything, but taking one did push me to seek professional evaluation. The score made me think “Maybe this means something. Maybe I should learn more about this and see a doctor.”

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u/apcolleen 5d ago

I have 3 friends so far who have either gotten an autism or adhd diagnosis because my memes were "too relatable". There is a lot that clinical presentations miss because what is available to medical professionals lacks nuance. Most of the coping strategies I have developed since getting diagnosed with ADHD at 36 and autism at 41, I have learned from mental health providers online who also have the conditions so their lived experiences mixed with clinical constructs can be better explained.

Most therapists made me feel as if I was choosing to be "too sensitive" and the solution was obviously to medicate me into dullness. But the real solution was medicating my ADHD that I hid really well because I was trying to hide how overly sensitive I was.Oh and I ended up with /r/dysautonomia because of masking so hard and then mold exposure sealed the deal.

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u/dtalb18981 5d ago

No it's better to tell people to get an informed diagnosis

You don't tell someone to check webmd and figure it out when they have a runny nose, you tell them to go to the doctor.

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u/ghoulthebraineater 5d ago

Not everyone can afford it. Even with insurance my assessment was nearly $1,000. And it's not like a former diagnosis really does much other than give you some answers. If you're lvl 1 and middle aged like myself you've likely already figured out coping strategies on your own.

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u/zeno0771 5d ago

It is expensive especially in the US (after insurance mine was $1800). A formal Dx does a lot more then just "give you some answers", however.

I was 50 when I got mine and knowing why I am the way I am was a game-changer for me. In most cases, without a Dx, you won't know which behaviors are coping strategies, or even that there are any. You may just plow through life nihilistically and blame the rest of the world for all of your problems--a common behavior of narcissists as well, and that's not a group you want to belong to.

If you know why your various traits are what they are, you may discover that some of your coping strategies are actually harmful: Substance abuse is a common one. The externalities will all point to the substance abuse itself being the problem and not a symptom of something else. So now you're left with a harmful coping strategy being taken away and nothing to replace it with, because you don't know why you need a coping strategy in the first place.

If you don't know why you behave a certain way, it's not really a coping strategy; it's a shaky stopgap that doesn't follow any actual reasoning because not only do you not know why you behave the way you do, you also don't know why others behave the way they do toward you.

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u/ghoulthebraineater 5d ago

I guess that's what I meant by some answers. I had a lot of unanswered questions about why I struggled with certain things. Understanding the why of things has always let me figure out the hows.

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u/[deleted] 5d ago edited 3d ago

[deleted]

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u/dtalb18981 5d ago

Because for a lot of people their feelings matter more than objective reality.

They have decided they are autistic because of xyz so they are autistic because it makes them feel better.

Instead of just admitting they could just be weird.

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u/dtalb18981 5d ago edited 5d ago

This is the same dumb argument i see all the time.

"Ugh nobody can afford going to the doctor im just gonna Google it really hard.

Oh all my symptoms match cancer guess I have it.

I know i have cancer and nobody can tell me otherwise.

I'm a survivor."

Edited for better realism.

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u/alinius 5d ago

Ok, and how do you know you need to get an informed diagnosis? How many people with a runny nose think it is just allergies, take some OTC meds, and call it a day? It is only when that person thinks it is more than just allergies that they would go to the doctor.

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u/dtalb18981 5d ago

If you are at the point where you are Googling things trying to figure out if something is wrong with you.

That is the time to go imo

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u/Shufflebuzz 5d ago

You go to the doctor for a runny nose?

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u/cortesoft 5d ago

What? You wouldn't tell everyone with a runny nose to go to the doctor, that would be way too many people going to the doctor. You do some self triage first, and then decide if it is worth going to the doctor.

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u/dtalb18981 5d ago

It's called an example

Your comment is almost the definition of pedantic.

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u/cortesoft 5d ago

No, I think it fits perfectly well with the metaphor you are trying to make.

With any medical issue, there is a multistep process to decide what to do. It starts with noticing something isn’t right, then the next step it to figure out if it is worth going to a doctor. Doing self assessments and following advice online is good way to do this, whether it is a runny nose or suspected autism/adhd.

Based on this self assessment based on advice you find online, you then can decide whether the next step is seeing a doctor.

With a runny nose, the advice is probably something like, “If you are experiencing any of these symptoms, go see a doctor right away… otherwise, rest at home. If you don’t get better after 2 days, or the symptoms get worse, see a doctor”. That is perfectly good advice for a runny nose.

For autism, it might be “if you experience any of these things, try out a self assessment. If you score above a certain threshold, you should go see a doctor for a full clinical assessment”

That is also reasonable advice to give to someone.

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u/dtalb18981 5d ago

I mean you can believe that but you are wrong.

It's never a good idea to self diagnose yourself.

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u/cortesoft 5d ago

I never once used the word diagnose to describe what you do at home. It is a self assessment to determine your next course of action. You can call it whatever you want, but everyone does it before you go to a doctor or a professional. Do you never take a single over the counter medication without going to a doctor? Do you go to a doctor every time you feel anything out of the ordinary? If you do, your doctor will quickly diagnose you as a hypochondriac.

It is prudent and sensible to do some basic research to determine if you should seek care or not. I am not saying you should self diagnose and tell everyone you have a disorder after your self assessment, but you should use the information to determine which type of doctor to see or if you should see a doctor at all.

Just because some people take a self assessment and consider that a diagnosis doesn't mean a self assessment isn't valuable or an important step.

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u/dtalb18981 5d ago

Then why comment you literally just said what I said.

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u/cortesoft 5d ago

Because I think you and some others on this post have been throwing the baby out with the bath water. I get why you and the others have concerns about people self-diagnosing, treating that as an actual diagnosis, and never seeking real help; however, I feel like responding to that concern by saying any self-assessment is useless and should be ignored is not actually helping people. I think a better response is to say, "it's good you have been working on figuring out how your brain and body work. Now that you have an assessment that shows you might have autism, it is probably a good idea to get professionally assessed so you can decide what to do next"

Encourage them to take the next steps instead of dismissing everything they have been working towards.

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u/dtalb18981 4d ago

No because they don't have an assessment of autism.

They googled really hard and now think they are autistic.

At that point them going to get diagnosed is pointless because they already believe they have it and will just keep going to doctors until someone tells them they do.