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/Anxious_cactus 5d ago

Also masking. I'm 33, I can display very obviously when I'm by myself or with family, but I have 25 years of experience in masking, it's hard to just let the mask fall, even in front of a therapist who is doing the assessment.

It's like they conveniently forget about masking, especially in adults.

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u/UrbanDryad 5d ago

Same. I've masked for so long I'm not aware of doing it. It's become so habitual it's impossible to draw a specific line in the sand between the mask and my natural self. They've fused and blurred into one another.

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u/whichwitch9 5d ago

It's always an interesting question of when does it become not masking anymore? When it becomes normal and just doesn't cause stress anymore, it's not really masking. Where's the line between natural and unnatural? Learned behavior is normal for everyone, and no one stays at a same baseline behavior for their entire life due to gaining experiences, and even not on the spectrum adults will adopt coping mechanisms for various things into their routines.

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u/X-Aceris-X 5d ago edited 5d ago

That's the thing, masking IS stressful, even after a few decades of doing it. (Saying this as woman who is clinically diagnosed with ASD level 1). Even while I'm masking, there's a level of uncertainty, distress, and unease of how to handle a social situation if I encounter something I haven't encountered before. I'm hyper vigilant. My mask runs like an adaptable script that I have carefully crafted, learning phrases and body language that "works" for people through literal studying and trial & error. But I am not totally calm in social situations. It is stressful and unnerving.

For me at least, I'm an expert (albeit imperfect) masker, but when I get home, I completely crash. Often the next day or two or three I have extremely low energy. The masking is habitual, I haven't found a way to stop myself from relying on it yet because I know it works and people generally accept my masked self out in society. It's scary to drop the mask and use "myself" instead--I haven't consistently presented as "myself" in public since I was a kid that lacked any social awareness.

But it leaves me totally drained. To varying degrees: i.e. with some people or in some circumstances, I mask a little less, so I'm less drained.

I assume people are drained when they mask, even if it is habitual. Thus their masked self is not their true self.

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u/LonnieJaw748 5d ago

This is an incredibly accurate description. Intense or long durations of masking lead to autistic burnout.

I look at it as the neurotypical world being uncomfortable accepting neurodivergence, and high functioning people on the spectrum are socially coerced into unspoken expectations that we adapt to their world, instead of neurotypical folks accepting and appreciating a wildly different perspective or social behavior than theirs. If there was a true acceptance of the variations of human cognitive abilities, I feel our masks would be far less tasked with the pressures of us “fitting in” or being “accepted” in a world that hasn’t necessarily been constructed to allow neurodivergent minds to thrive or be successful in careers and relationships.

I can literally watch myself curating my mask to specific groups/settings/personalities from an observers perspective, being fully aware of it doing its thing but feeling little to no control over its efforts to make all parties comfortable with a social interaction. I often question if I’ve ever become my own person, or if the demands of the neurotypical world have only allowed me to live an entirely inauthentic version of my personality. It’s so weird to grieve the loss of your person who may have not yet been given the space to exist as they are, and only as they are, with no efforts or unspoken expectations to provide neurotypical people with the space for them to accept me. I can’t necessarily definitively say that I am an individual, unique person.

I am grateful for my mask sometimes, because it does protect me from distress, but also while incurring it at a different rate over time as a sort of trade off. A slow burn instead of an inferno if you will.

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u/Fox_a_Fox 5d ago

Yeah exactly. Idk if I would call it stressful because most of the times it's not really causing bad emotions, but it sure as hell is incredibly energy draining and before my (self, therapy cost too much right now...)diagnosis it made me wonder how people could have such high levels of energy (especially social energy) even when I was getting more sleep and was physically fitter

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u/UrbanDryad 5d ago edited 5d ago

For me it's resulted in going outside around people just being an inherently stressful activity. I'm hyper vigilant. I'm actively analyzing everyone and monitoring reactions. I have this running internal monologue.

"Cool, they're laughing. Joke successfully deployed. VICTORY! Ok, did that smile look tight, though? Ok, you've spoken 3 times in this conversation so shut up for a bit. Don't talk over anyone. DON'T TALK OVER ANYONE. It's probably time to ask a question that makes it look like you care. EYE CONTACT."

I'm wound tight. Afterward I ruminate on it obsessively trying to parse where I did well, anything I might have missed in the moment, and where I could improve. When I get home I'm exhausted. I need hours, or days, of alone time to decompress and recover.

Trying to manually turn the system "off" feels as inappropriate as stripping nude in public or intentionally soiling myself. I just can't.

The system only turns entirely off around my spouse and children. The level of intensity is milder around close friends and extended family I feel safer or more accepted around, but it's still there.

For context I'm 43. Not formally diagnosed myself but when both of my children were diagnosed it opened my eyes about myself. I'd seek a formal diagnosis, but what would it get me? I'm too old for school age accommodations. It'd be expensive and time consuming for little tangible benefit.

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u/cacocat 5d ago

I actually got a bit teary eyed reading this. I just recently got diagnosed at 37, and I've masked all my life not understanding why I struggle with things this way. I've only recently started to accept that it's "normal" for me, and all my issues aren't me being broken, just me.

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u/Caroline_Bintley 5d ago

I've only recently started to accept that it's "normal" for me, and all my issues aren't me being broken, just me.

This internet stranger hopes your diagnosis is bringing you a newfound peace of mind.

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u/cacocat 5d ago

Thank you, kind stranger! Many wellwishes to you.

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u/AENocturne 5d ago

It never becomes not-masking. I smile and fake laugh to diffuse the fact that whatever you're joking about isn't actually that funny to me because people get weirded out that I have no reaction to what's supposed to be funny to normal people. I've gotten good enough that people don't question it, but my wife has long since realized I'm faking in most social interactions from what I actually find funny.

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u/grimbotronic 5d ago

Masking is a survival mechanism/trauma response, it's how we protect ourselves. When an autistic person is masking they are generally in a state of hyper-vigilance. Stimming is a coping mechanism. Masking is often used to suppress our coping mechanisms. Masking is always masking, and it's always harmful to our health.

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u/whichwitch9 5d ago

Masking type behavior happens to everyone, on the spectrum or not. My own habits come from trauma. The big difference is, depending on what therapist I've seen, they either call it masking or coping. The framework is important. My own issues are mine. I am not allowed to cause another person distress or trauma just because I have trauma issues. This is for 2 reasons: to keep a civilized society and because I care about how they feel. This is part of being a empathetic human, and it is not wrong either. No one lives life 100% comfortably. That's a myth. That's also necessary to survival. My coping mechanisms come from a need to protect myself. And, they have at times, too. There's a balance that needs to be struck to be a functioning society. For me, I've accepted that I am only one part of it and when I go in public, I am in other people's spaces and must find a way to respect both of ours. This is the price of being with other people. In my opinion, it's worth the discomfort I can feel. At hone, of course I'm different- that's my space and a controlled environment.

What I'm getting at is I think some people do find a balance that does get rid of a lot of distress. Not understanding the balance and that interacting with people is always a give and take seems to be another problem that goes unnoticed

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u/grimbotronic 5d ago

Allistic masking is not the same as autistic masking.

Autism is a disability. Autistic masking involves hiding and suppressing the traits of that disability.

There is no balance because we are already at a disadvantage. Autistic masking is disable people accomadating the non-disabled.

You speak of coping mechanisms, but part of autistic masking is forgoing those coping mechanisms.

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u/whichwitch9 5d ago

The other part is needing to learn how to respect other people's space and emotions. They cannot be constantly uncomfortable to accommodate you, either. That is why I say it's about finding balance between the two needs

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u/StuChenko 5d ago

Except neurotypical people don't want to meet us half way and find that balance. Your choices with autism are don't mask and be shunned or mask constantly and be constantly uncomfortable to appease everyone else.

People with autism are constantly asking to be met halfway and for NTs to put effort into understanding us the same way we do them but we're told it's unreasonable to ask everyone to be uncomfortable all the time as if there's no middle ground. Then as well as that we are expected to make ourselves uncomfortable constantly. It's a total double standard.

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u/whichwitch9 5d ago

It's a double standard to say masking is uncomfortable but then expect everyone else to be uncomfortable around you to not mask. I don't think you understand it is still exhausting if you are not autistic, especially if you are introverted. You need to accept balance is necessary or understand you will always have pushback. Everyone is being asked to adapt behavior. That's normal.

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u/StuChenko 4d ago

It's not the same level for introverts as it is for people with autism. Feeling a bit introverted and shy is not the same as being autistic, doesn't even come close.

I haven't asked anyone to be uncomfortable all the time. I've asked for NTs to meet us halfway and try to understand us and adapt to us as much as we do to them. Balance is necessary but the NT idea of balance is doing everything their way.

You've basically proved my point by dismissing my call for balance and to be met halfway then lecturing me on balance and how I must adapt.

It's a very common behaviour form NTs. They absolutely fundamentally resist making changes and adapting for us while telling us we need to adapt and that it's just part of life and that everyone has to do it. As I said, it's a massive double standard.

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u/EnlightenedSinTryst 5d ago

Do you suppress yourself to please others?

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u/whichwitch9 5d ago

Considering I want to punch anyone who even brushes up against me by accident because I hate being touched by strangers, yes. That's called not letting my trauma be someone else's problem. There's plenty of people who have issues, neurodivergent or not. The give and take is how we live in a society together

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u/EnlightenedSinTryst 5d ago

That’s rough, I’m sorry :(

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u/Klexington47 5d ago

I always say you can't really mask away your diagnosis. Masking refers to personality disorders, reappropriating the term to mental health is super weird

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u/bothwaysme 5d ago

Me too. The mask and me are unraveling at the moment. I didn't know that was what I was doing.

I don't know if I am autistic or not as the diagnosis is expensive where I live. My therapist says I have adhd, cptsd and possibly other co-occurring developmental issues.

I just go with nuero-divergent. Someday if i can afford an actual diagnosis, i will see what the doctors say.

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u/Reglette69869 5d ago

This was my first thought. Of course adults have been conditioned not to display certain tell-tale behaviors in professional settings and it's easier to disclose the ones we've been taught to be ashamed of with an online test vs a living human who is trying to analyze our deepest selves which, again, we've often been taught to suppress.

Also considering some of our parents may have avoided getting us diagnosed as children for various reasons ie stigma, laziness, "everyone does that" also autistic parents, being in certain religious communities where you're just characterized as "difficult," distrust of doctors. There are so many reasons an autistic person could go without a professional diagnosis for years.

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u/grimbotronic 5d ago

The clinical definition of autism is based on observed behaviour. High-masking individuals hide/internalize those observed behaviours. Masking isn't taken into account when it comes to diagnosing autism, nor the trauma that causes masking. The ADHD/ASD combo is also woefully misunderstood.

The clinical diagnosis criteria for ASD is based on children, not adults and is outdated and biased. It's not surprising clinical diagnosis and self-reports in adults don't align.

I wasn't diagnosed until my mid-forties, after being diagnosed with ADHD (according to the DSM, having both wasn't possible until 2013).

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u/CatalogK9 5d ago

Yeah, they JUST added masking to the DSM barely a year ago iirc. There’s a massive lag between the DSM and the research literature, and even worse lag in actually taking Autistic people and researchers seriously in sifting through the junk that’s been published that should have been discredited and retracted ages ago.

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u/princesssoturi 5d ago

However, therapists who are specialists in autism diagnosis are excellent at seeing masking.

I’m a teacher so I’m on a team for identifying autism. And I would say when I flag a student, it’s rarely about their behavior. Kids are great at masking too, and it’s different because all kids act weird. So it can really blend in.

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u/lady_ninane 5d ago

However, therapists who are specialists in autism diagnosis are excellent at seeing masking.

Absolutely! But those specialists are incredibly hard for people to access. Education on these things is not where it should be to meet demand.

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u/alliusis 5d ago

That is not always true! Medical practitioners are human and a lot of them can be out of date too, and those people might be the specialists you're directed to for diagnosis. It doesn't mean everyone is, but generational thinking of "this is what autism is, this is what it isn't" can be pervasive.

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u/neonlexicon 5d ago

My mask didn't fall for my therapist until they tried to guide me through meditation & it resulted in me having a meltdown because every time I tried to clear my mind, I'd notice my sock was slightly twisted or I could feel the back of a metal rivet on my pants touching my skin, or a loud car would go by outside. After that I got referred to a therapist who specialized in working with teens & adults with autism because the other therapist said I was beyond their ability. That was definitely an experience.

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u/roccmyworld 5d ago

For this to be relevant there would need to be a reason that people with clinical diagnoses don't mask.

In addition, the tests were designed to evaluate instinctual understanding of social manipulation. That's not something that can be learned.

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u/imafourtherecord 5d ago

The clinical reason could be level of severity. The more severe the less capability. Also level of support systems could play a role. Also girls are more pressured socially and culturally to mask to succeed.

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u/Nauin 5d ago edited 5d ago

Which is exactly why both parents are interviewed in a proper autism screening, even as an adult. They have to know what you were like as a toddler and in early interactions with other toddlers to accurately diagnose you.

ETA: you can't have autism without having had very specific behavior and developmental patterns when you were a baby, toddler, and young child. You can't be autistic without developmental delays. This is why learning how you were at an age you can't remember is important. Why this comment is becoming controversial, I have no idea.

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u/LARPerator 5d ago

Which sucks for a lot of people, because there's a lot of "there's nothing wrong with my baby!" Parents who just refuse to do anything that could result in a diagnosis. It's a shame there isn't testing yet that doesn't rely just on character interviews.

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u/lady_ninane 5d ago

It also sucks for people who have no living parents or anyone who can attest to what they were like as a developing child.

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u/ExistentialNumbness 5d ago

Or who have had to stop talking to their parents due to abuse/neglect.

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u/Porttheone 5d ago

There's also the parents who are autistic themselves and can't pinpoint anything out of the ordinary because they do the same things.

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u/CatalogK9 5d ago

This is incorrect. Nobody was consulted during my assessment but me, though both my parents were available. Not every Autist presents the same way, and some of us may even be ahead of many milestones and/or have companies conditions like ADHD that help compensate for each other in ways that make detection that much more difficult. It’s also worth remembering that the adults who are considering or seeking a diagnosis now were raised in an era where nobody really knew anything about these disorders without three misconceptions for every correct idea, and the stigma was incredible. My parents lost track of how many people told them I should be on Ritalin and only continued to double down on my being normal, even into my thirties as I presented them with dozens of research papers and pirated clinical assessment forms proving that my son and I were both AuDHD, even after both of us got formally diagnosed by multiple clinicians, even after knowing both of us our whole lives and routinely complaining about our AuDHD traits specifically. Also, some of us DO remember being that young, and are perfectly capable of conducting our own family interviews to gather that history for ourselves.

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u/Nauin 5d ago

There is more than one evaluation used to determine whether someone has autism or not at this point. Just because my parents were interviewed and yours weren't doesn't mean I'm incorrect, it means we went through different evaluations. Probably even in different decades as I was diagnosed in the 00's, and there's been a significant amount of development in this subject since then. But I know that parent interviews are still important to the specific evaluations where they're used, at least they were used in my niblings evaluations both this year and last year. And according to my friends who work in special education an

I can remember those ages, too, it's just that most people don't, and not every autistic or auDHD person does, either. And what's normal to an autistic person is not normal to everyone else. There's just as many neurodivergent people with bad recall as there are ones with incredible recall.

You have to remember this is a spectrum disorder and with that there is an extremely large variance in symptoms and behavior. One experience isn't indicative of everyone else's experience, and my experience isn't wrong for being different than yours.

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u/CatalogK9 5d ago

You said it can’t be done without parent interviews, which is incorrect. If you worded your post poorly, that isn’t my fault.

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u/wildbergamont 5d ago

"But masking" could be used for nearly any mental health issue. Yes, your subjective experience matters and how you feel matters. However, the way that a given issue plays out in your day to day behaviors is the difference between different diagnoses and treatment options.

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u/ghoulthebraineater 5d ago

In the case of ASD the DSM-V specifically mentions masking.

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).

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u/wildbergamont 5d ago

Right, so i don't understand why the person i replied to would think that researchers "forget" about jt

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u/ghoulthebraineater 5d ago

Because they often do. Doctors are human. They forget, misinterpret things or just have outdated information too. I experienced it first hand. I'd talked to therapists, doctors and psychologists and psychiatrists for 30 years trying to figure out my brain. Not one of them ever thought to consider autism. It was always Social Anxiety Disorder, General Anxiety Disorder and/or depression.

It took me figuring it out for myself and bringing that to my doctor to finally get an assessment. Sure enough, ASD Lvl 1.

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u/son-of-hasdrubal 5d ago

I think there's a fine line between autism and ADD as both are neurodivergent with some overlap.

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u/CatalogK9 5d ago

That, and ASD gives about 60% odds of also having ADHD as a causative factor; ADHD does not have a similar effect, which makes sense if you think about Autism affecting more foundational neurological processes, while ADHD affects higher-level processes.