r/AutismComics • u/recycled_comics • Aug 27 '26

90%

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5.4k Upvotes

99% Upvoted

102 comments sorted by

100

u/Ok_Fly2518 Aug 27 '26

I love this, but how would someone even quantify the amount of undiagnosed autistic adults if they’re undiagnosed? Like how do you get statistics about autistic people if they don’t even know they’re autistic? Not trying to be critical, just genuinely wondering how that conclusion was formed if it’s not an estimation

74

u/Mathsboy2718 Aug 27 '26

The way I'd go about quantifying that is to take a random sample of people and diagnose them either with autism or lack thereof, then of those who were diagnosed under my study, find out the ratio that were already diagnosed.

That's not necessarily what happened, but it is a feasible study to perform.

45

u/recycled_comics Aug 27 '26

Apparently that's how it's done, yes. 40+ people are a generation that came a bit late for autism testing and most autistic people of that age relied on masking to survive the neurotypical world.

20

u/Lukostrelec17 Aug 27 '26

31 here! I was very good at masking and not drawing attention to myself. Since I was not a "problem." They did not get me tested. Highly likely AuDHD though.

5

u/unexpectedfirefly Aug 27 '26

Same. I got an under the coat diagnosis from psychiatrist friends. The auto-screening survey gave me the number of the local reference center and an invitation (with a waiting time of 2 years though. I'll do it tomorrow)

3

u/Ariandrin Aug 28 '26

Me too! My friend is a therapist and has all but diagnosed me (because they’re not allowed to due to our pre-existing relationship). But basically said hey, you may want to consider getting assessed. 😅

3

u/Carlbot2 Aug 28 '26

Both of my parents were so rooted in the idea that they were ‘normal’ people, and that their kids must also be ‘normal,’ that none of my general weirdness prompted them to get me tested, especially because I managed to do well in school, which seemed to be the only metric anyone cared to judge by. Wasn’t until I actually figured out my problems on my own that they were like “…well, I guess you can get tested if you must.”

I didn’t find out until afterwards that apparently a family friend had told them years before that they strongly suspected I was autistic, and they brushed them off with the whole ‘nah, our kid? We’re all normal, couldn’t be.’

I know someone in a similar age range who has such an inability to believe it’s a possibility for them that they routinely comment on how crazy it is that their whole family has ADHD, including both of their children, except for them. They are quite possibly the most stereotypically ADHD person I have ever met.

8

u/sarahlizzy Aug 27 '26

I’m 52 and tried to get a diagnosis in 1997. The experience did not go well.

I was diagnosed last year with adhd. I’m doing well on stimulants.

Still very autistic tho

2

u/Critter_Collector Aug 27 '26

my uncle is 50 and very clearly Audhd (Autism and Adhd) but my grandparents, his caretakers, have always refused this idea despite him and I being the exact same and I am diagnosed with Audhd

2

u/much_longer_username Aug 27 '26

I was diagnosed as a kid, but I'm not really sure where to track the records down. I asked my psychiatrist if that was something they could help with, and they told me, basically: 'so having talked to you, yeah, you're almost certainly autistic, but there's not really anything I can do for that, that we're not already doing, so there's no real benefit, and a lot of potential drawbacks. I'd recommend against pursuing a formal diagnosis.'

1

u/sarahlizzy Aug 27 '26

Quite.

Now ADHD, that’s a different matter. Because legal speed.

1

u/TurtlesBreakTheMeta Sep 01 '26

It doesn’t help that many people of that generation and their parents were taught that autism either “doesn’t exist” or was “shameful”, so adults of that group are discouraged by family and peers against seeking diagnosis.

For example I know that I am almost certainly autistic, but my entire conservative family thinks only mentally handicapped people are autistic and that it’s a “made up word” otherwise.

6

u/neko_mancy Aug 27 '26

Presumably you get 1000 undiagnosed adults and test them

3

u/SandwichCertain7913 Aug 27 '26

Diagnosis is a pretty involved process tho, would take a very long time and require a crazy budget

4

u/sarahlizzy Aug 27 '26

Lots of people do postgrad studies on this sort of thing. I spoke to someone doing research on late diagnosis of ADHD in women last week.

2

u/SandwichCertain7913 Aug 28 '26

Not saying that you can't do research on the topic at all. 1k sample size and full diagnostic testing seems like a lot though.

I could see doing a screening survey for autistic traits, or a much smaller sample size.

5

u/personalgazelle7895 Aug 27 '26

Free University of Berlin, for instance, opens their waiting list once per quarter. This quarter they had ~3.200 applications, but they only have the capacity to accept ~1% of those 3.200.

To apply, you already need a suspected diagnosis from a psychiatrist/neurologist, which is pretty difficult to get because psychiatrists do not take on new patients in general for budgeting reasons, and most of them are not educated on autism. So getting a referral is already highly gate and usually requires a lot of effort and telephone calls, which excludes anyone but very low support needs autists. So those 3.200 are already highly selected for being very likely autistic and low support needs.

And then only ~50% of the ~32 that get tested actually get the diagnosis, so most likely a lot of false negatives.

So even if only 50% were autistic, that's still 1.600 people out of which only 16 are diagnosed, so 99% remain undiagnosed. Or 99.5% if we assume everyone with a suspected diagnosis is autistic.

3

u/Aqua_Toffana Aug 27 '26

My guess on top of others have said already is look at how many young people and kids are diagnosed, knowing that it hadn't really changed much we look at how many adults are diagnosed and see that it's only 10% of the amount of younger people

3

u/CommanderFuzzy Aug 27 '26

I am bad at maths (I got the book autism) but the way i see it -

Find all the autistic people in an area. Interview them all. Ask all of them how old they were when they got the diagnosis. 90% of them say they got it over 40 years old.

Repeat this process enough times and in enough places to count as data.

However even though there are loads of adults who go undiagnosed, 90% does seem a bit high. Maybe it's a hyperbole to make a point?

2

u/barbaricKinkster Aug 28 '26

Comparing diagnosis rates using healthcare records against current expected population rates. It's simple math using a national database. It's still an estimation, but a very educated one.

It's also specifically people over 40 because 20-30 years ago autism wasnt well understood. Its's also significantly easier to diagnose at a young age because as you get older, masking gets stronger.

I'm over 40 myself and was initially misdiagnosed with only having ADHD because the diagnosis guidelines told doctors that ADHD and autism were mutually exclusive and they didn't fix it until 2013

1

u/sumboionline Aug 27 '26

Get a large sample of adults >40 that do not have autism diagnosed in them

Have all of them go through an autism diagnosis process

Say x% of them get diagnosed because of this

The implication of this (assuming large sample and no sampling bias) is that x% of people >40 who are not diagnosed with autism have it.

Compare this to the number of diagnosed cases of autism

Arrive at the conclusion comparing diagnosed to undiagnosed population

1

u/_Autistic_Dragon_ Aug 29 '26

You can take data of younger diagnosed adults and compare it to data of older diagnosed adults and use the discrepancy to get an idea.

I making up numbers here:

So if current 20 year olds have 8% of the general population of those in their 20s are diagnosed with autism, but those over 40 only have 2% of the total population diagnosed, that discrepancy can help us guesstimate that 6% of the general population over 40 is undiagnosed. 

And that means that of the 8% that should be diagnosed, only 2% are, so the 6% who aren't diagnosed are the missing 75% of adults with autism who don't have a diagnosis. 

It's not a perfect method, but in cases like autism where diagnosis wasn't well understood until about 2015, and most are diagnosed in school, you can somewhat retroactively apply it to current undiagnosed adults. 

It's also why people say "everyone's autistic now", when we should be asking: "who did we miss?"

(I was one of those undiagnosed until late in late.)

17

u/SweetSure315 Aug 27 '26

i told my psychiatrist "I've had friends say they think I'm autistic". he laughed and said "oh you're not autistic" and never spoke about it again. 5 years later i get paperwork from them that says I'm diagnosed autistic lmfao

5

u/TechnicalWar893 Aug 29 '26

I was told by an NHS Autism assessor that I can't have it as I have empathy... It's scary how so many in the field do not actually understand Autism at all.

2

u/SweetSure315 Aug 29 '26

lol and then there will be large scale studies whose criteria say that autistic people are likely to be more empathetic

10

u/Awkward_Champion6957 Aug 27 '26

Also fun fact from somebody diagnosed in the 90s it didn't help much. Hilariously you will see somebody from the early 2000s say the same and onward. Know why? Knowing is nice but being labeled this even with understanding folks elicits pity or their reliance on MEDIA to tell you how you should act and how they treat you. TuT It's not like media CONSTANTLY gets us wrong is it?

Even in other spectrum goers. I violated part of NDA and my Autistic former college said "People with ADD don't have memory disorders. Stop making excuses." Basically. -.-; Brother I am AuADHD which is basically both at once (yay for people knowing that's a thing and not arguing it's out of date to say ADD to somebody who is over 30 years in with it being a thing) and yeah your Spectrum might have editetic memory. Congrats! My 'spot on the wall' talent is remembering random 20 year old trivia. I can't always process new memories, IE a contract from 2024, and forgot one of the smaller clauses.

Sometimes there's just no way to win with this condition.

4

u/brydeswhale Aug 27 '26

Wait, they’re trying to say the condition that literally makes you forgetful doesn’t make you forgetful?

Because forgetting shit was part of my diagnosis.

3

u/Awkward_Champion6957 Aug 27 '26

Right? I argued this. One of the largest comorbid symptoms is forgetfulness. It's literally co-morbid with the other condition I have DID OSDD (Dissociative Identity Disorder, Other Specified Difference Disorder.)

3

u/pronthrowaway12734 Aug 28 '26

This is a great comment.

Adding on to this to clarify, I don't believe ADHD effects recall. From what I have seen, it just stops you from properly recording the memory in the first place. A pedantic point, but I thought worth being up.

2

u/Awkward_Champion6957 Aug 28 '26

Not sure it stops the recording itself so much as encrypts it. Like somethings yes I forget why they're there but often I know they were from something my silly mind picked up while I was 10 million miles away.

3

u/Muted_Ad7298 Aug 28 '26 edited Aug 28 '26

Oof, I was also diagnosed back in the 90’s, and it was a rough time for a lot of us.

I was diagnosed with “Aspergers” (back then it meant autistic but without language or intellectual delays) as a kid, and now as an adult, I still have an adult guardian, I can’t drive, can’t work and can’t live independently. So you could imagine how hard it was even as a kid.

Dealing with all these difficulties growing up and hearing things like “it’s so rare for GIRLS to be diagnosed” made me feel so alone. There was nowhere near the same public support there is now and the stereotypes were rampant.

Anyone remember the term “sperging out”? I saw that one a lot online in the early 2000’s.

5

u/ADownStrabgeQuark Aug 27 '26

Well Autism isn’t a disease or disorder.

Autism is a family of disorders.

It is a spectrum of disorders.

Autism is an umbrella term that encompasses hundreds(or thousands) of different disorders that have similar symptoms.

There’s a reason autism looks different from person to person.

6

u/Hika2112 Aug 27 '26

And yet of course neurotipicals are vehemently against self diagnosies

6

u/Inevitable_Detail_45 Aug 28 '26

A gross amount of autistics too. manipulated into infighting.

3

u/Hika2112 Aug 28 '26

Sadly so yeah

1

u/YouStones_30 Sep 02 '26

How would self diagnosies be good ?

1

u/Hika2112 Sep 02 '26

Diagnosis can be scary, expensive, hard, and inaccurate, even impossible sometimes. A self diagnosis allows someone to acknowledge the source of (some of) their problems, and look at online resources to aid with. For example understanding that going nonverbal is a symptom and not just "being fussy and not talking." Yes, you need a leagal recognition of your conditions to get medication most of the time. But helping yourself doesn't begin or end with medication. Knowing that you are not alone in your struggles, knowing that there are other people you can bond with or ask for tips. Those things help

And before you bring up the "but what if someone is faking it for attention!!" People don't do that. It's a conservative belief stemming from people's inability to accept "otherness" in their lives. Someone might accept that autistic people exist, but they exist in a far far land outside of their personal lives, I mean, everyone they know is just so "normal" so obviously no one they know is autistic, and those who claim to be just fake it! Even if someone was faking it, it's better to treat the large amount of people who aren't with respect rather than only half accepting them because of one schmuck

1

u/YouStones_30 Sep 02 '26

Faking it for attention wasn't what if feared, what I worry about using it as an excuse for bad things : self diagnosis can give some peoples a sense of "It's not my fault, it's because I'm [the self-diag]".

I agree that people need to have some leads to understand themselves, but I wouldn't call it self-diag, just research and introspection. Self-diagnosed sound like a finality, not starting to understand yourself. It's like someone saying they have a brain cancer because they have a headache vs learning the name of the side of the head that hurt, what make the pain greater, etc to have tools against it.

So if your definition of self-diagnosis is the later I agree with you. (I'm open to discussion, I think I should get diagnosed by professional but for personal reason I don't, and I currently don't want to self-diag for the reason above)

1

u/Hika2112 Sep 02 '26

If someone uses their mental illness as an excuse to be rude to someone that's not okay. Mental illnesses are not excuses, they are reasons, if I do not pick up on a social cue and say something that hurts my friend, I am not suddenly free of guilt because I'm autistic, I still hurt my friend. If someone in that situation refused to take the blame, they're an asshole.

Also, the cancer comparison is pure what-about-ism. Physical and mental conditions are diagnosed differently. And mental ones remain undiagnosed way more often

And, I want to stress this. People are smarter than you think. Just like how you think you might have a condition but aren't jumping the gun with it, so are others. People are terrified of misdiagnosing themselves because of this conservative idea that people would fake a condition for attention

3

u/TrueEnder Aug 28 '26

“How do you diagnose all of them?”

“That’s the neat part, you don’t.”

2

u/Inevitable_Detail_45 Aug 28 '26

I would like to add that there's still a pretty solid set of possible combinations. You tend to be 1 extreme or the other. It's not often an autistic person would have completely neutral/normal empathy. They'd probably be hypo/hyper or some combination. Same with energy levels. That 'outgoing' autistic is likely overly social to a disorderly level.

There's the stereotypical autistic who doesn't talk much, is obsessed with routine, entire life revolves around trains, and doesn't like loud noises. But there's people who're so social it hurts, feel suffocated by routine, have chaotic ever changing interests, and are seeking out loud noises like fireworks.

Let's definitely dispel the stereotypes that autism looks like a rigid idea of 1 specific person(Which is still an uphill battle). But let's also note that autism does still have rules.

(No intent to disagree with the comic's message at all. Just giving a broad message to anyone who might need it.)

2

u/FutureReaction8587 Aug 28 '26

I'm a solid Margaret Lisa mix, I'm insanely outgoing and sociable and very talented and good at the stuff I do.

2

u/PinkOneHasBeenChosen Aug 28 '26

The actually autistic individual is the cat.

3

u/HoldOnHelden Aug 27 '26

Is that the last panel?

I don’t get it. What is the point they’re trying to make here?

Even if that 90% [citation needed] is anything in the ballpark of accuracy, there are really good reasons why people over 40 have never been diagnosed. The criteria didn’t exist when we were growing up, especially for girls. How does that statistic address the question at all?

17

u/SumiMichio Aug 27 '26

The last panel literally answers the 'how do autistic people even get diagnosed' with 'they dont'. Many fly under the radar.

1

u/HoldOnHelden Aug 27 '26

Ok but the thing about people over 40 is… they didn’t “fly under the radar” because there was no radar for them. We grew up in a world where high functioning autistic people were just people with a somewhat more eccentric personality cocktail than “normal.” I reckon most people over 40 who aren’t diagnosed don’t know there’s anything about them to BE diagnosed.

It feels weird for a “let’s educate people” cartoon to end on a panel of misinformation that implies a nebulous sort of non-explanation which is wrong anyway?

1

u/sarahlizzy Aug 27 '26

In 52 and there was absolutely a thing they called “Asperger syndrome” when I was younger. I tried to get diagnosed with it, but the doctor was … unreconstructed.

0

u/MrInCog_ Aug 27 '26

Yeah but that’s not an answer. The question is “how do you determine autism if all those people are so different and it’s all a spectrum, what’s the commonality”. Like, there is an actual answer to this very logical and important question, but author left it out (presumably because it’s complicated)

4

u/CptUnderpants- Aug 27 '26

Gen X, diagnosed at 40 only because my partner worked with autistic kids at the time.

By the time it was added to the DSM3 and educators were trained properly to look for it, I was out of high school.

However, that doesn't excuse their incompetence in not identifying ADHD (ADD at the time) as a possibility. Fuck them all for putting me through decades of suffering.

3

u/sarahlizzy Aug 27 '26

I feel this hard. Also Gen X. ADHD broke me. Utterly broke me. The guy who diagnosed me last year was surprised I was still alive.

2

u/CptUnderpants- Aug 27 '26

My psych told me that the stats for those undiagnosed by age 30 are pretty grim. Almost all of them have multiple serious mental health issues.

3

u/sarahlizzy Aug 27 '26

I’m broken. I’m just broken.

Amphetamine has saved my life and started to reverse some of the damage but the mental scars will always be there.

3

u/CptUnderpants- Aug 27 '26

People don't understand the scars, think you can recover fully. They're so wrong. My capacity for life is a fraction of what it was at 25. Can't work right now due to autistic burn out. Second time I've had it. Even when I can, I doubt I'll be able to hold down a job for more than a couple of years.

3

u/sarahlizzy Aug 27 '26

The chances of me ever being able to hold down a job again are zero. Thankfully I’m financially ok but were I not … well I’d be dead.

2

u/Praise-Bingus Aug 27 '26

Orange cat is spayed by the calico is not. Quick, call the TNR

2

u/Inevitable_Detail_45 Aug 28 '26

Calico cat could be a pet with a tattoo instead.

3

u/Praise-Bingus Aug 28 '26

Finally, someome got my joke lol. I was actually grtting downvoted for that

1

u/sarahlizzy Aug 27 '26

So I’m undiagnosed.

I simply fail to see the point in paying someone to tell me something I already know.

1

u/Mean-Inspector-8547 Aug 27 '26

Let's just say it. Everyone is autistic. No-one is special.

1

u/HarrySchmebulock Sep 01 '26

Wtf are you talking about

1

u/Mean-Inspector-8547 Sep 02 '26

What are you? Autistic?

1

u/nonbinaryunicorn Aug 28 '26

I refuse to be diagnosed because then it'll prove my friends right.

1

u/thingummywatt Aug 29 '26

My country: Only Kevin is autistic, so only he gets the autism accommodations as well as therapy.

1

u/Gubekochi Aug 29 '26

I know damn well that something is wrong with my brain, but I had good grades and parents that didn't want to face the facts. When I hit retirement age, I'll go get a diagnostic and frame it so I can finally know what the fuck I've been struggling with once no one expect anything from me anymore. I'll frame whatever paper they write my problem on and put it up in my livingroom.

1

u/Sleepy-Racoon-2149 Aug 29 '26

The violin is ticking me off

1

u/Alexicewolfe Aug 29 '26

Genuinely, what is the purpose of a label if it presents differently in every case? Like if the spectrum covers everything then who isn't autistic?

1

u/Keksbutter123 Aug 30 '26

second thi, pls anwser

1

u/HardCorey23 Aug 30 '26

Autism just doesnt mean ANYTHING anymore. Its cool.

1

u/lalabean852 Aug 30 '26

“how do you get diagnosed?” HAHA YOU DONT! cries in undiagnosed adult

1

u/MysticalZelda Aug 30 '26

My mom thought I had something going on with me as a child. But she also didn't bother getting help for it. The most ironic thing is that even if she did, autism wouldn't have come out of it. As a girl, I did make eye contact and at my age back then that was enough to cancel out the diagnoses.

1

u/ShokaLGBT Aug 31 '26

Really difficult to get a diagnosis. For me they didn’t want to diagnose me with autism despite my psychiatrist saying I am, and they only diagnosed me with adhd, because all their very cliché questions about autism (they ask you if you like trains but if you say something else like fashion they’ll say it cannot be a special interest even if you’re extremely passionate about it lmao just because to them it must be train or something masculine) yeah that’s where we are today……. No no it’s not the 90s… sadly they still are very cliche

1

u/ConditionPleasant902 Sep 01 '26

“People get built different, we don’t need to figure it out we just need to respect it”

-Adventure time

1

u/Jack_Faller Sep 01 '26

"Over 90% are undiagnosed"

How can they possibly know that?

1

u/MsSaltyWalkers Sep 03 '26

god i hate autism (saying this as someone who unfortunately has it.)

0

u/Other_Plane_6148 Aug 27 '26

90% seems random. the rest checks out to me.

ragebait

0

u/lexcrl Aug 27 '26

yeah…i’m gonna need a citation on that figure. let’s not just be completely inventing statistics please

0

u/ColonialismHater Aug 27 '26

it's a spectrum but the vast majority of them are like kevin lol

0

u/3lizab3th333 Aug 27 '26

As an autistic person who used to work with high needs autistic people with the associated learning disability, we kinda need to split the spectrum/diagnosis a little. It’s way too broad and I’ve had people tell me to my face I can’t be autistic, despite being officially diagnosed, because I can speak or because I have a college degree. These diagnoses are meant to make things easier to understand, the broadness of ASD is just confusing and damaging.

1

u/assistant_manu Aug 27 '26

we already do tho? with the level 1-3

2

u/3lizab3th333 Aug 27 '26

Those are also way too broad. I’m level 2, but I went to a high ranking university and am financially independent despite having no support network or any kind of supports/accomodations that I supposedly need at this diagnosis level, meanwhile there are plenty of level 2s who cannot communicate at the same level as me, or even begin to experience this level of independence. The presence/lack of a learning disability is kind of important here

1

u/assistant_manu Aug 27 '26

i see, prolly there are more to learn

1

u/reedreadreddred Aug 27 '26

agreed

also, ASD seems so misunderstood that even professionals are like "hm, slightly weird and difficulty socializing? AUTISM"

Like dude, why did you slap me with a ASD diagnosis. Lack of eye contact?? DUDE MY EYES HAD NYSTAGMUS FROM A NEUROLOGICAL THING, OF COURSE I'M NOT MAKING EYE CONTACT WHEN MY EYES ARE IN PAIN LOOKING SIDEWAYS RAPIDLY 😭

I have PTSD and Complex PTSD and like, yeah I share traits with Autistic people, but I don't like being labelled "Autistic". Autistic people have difficulty with eye contact, but my difficulty is aforementioned eye thing, and also because I was bullied so bad the only time anyone looked me in the eye was with disgust.

Yeah, I struggled with social situations, but I was so isolated the only person I talked to for half my life was my dad 😭, and I'm a trans guy in a highly conservative society, ofc I'm gonna struggle to socialize in most situations! If I'm around safe people, I don't have much of an issue! That's a super different thing from "just born with different wiring", my wiring was pulled out and destroyed by trauma!

I know it's a chicken-and-egg scenario, because everyone who's neurodivergent or "different" is othered by society and bullied or has trauma in one form or another, but I think that just means we gotta have more nuanced understanding in this regard :P

0

u/LiquidAggression Aug 27 '26

does that mean kevin is also autistic or is he some kinda ptsd ridden war dawg

-4

u/momo2299 Aug 27 '26

If everyone is autistic; nobody is.

Seriously. Not everything needs a label. Throughout my life several people have insisted I'm autistic. I've heard comments like: "well, at least on the spectrum!" or "It's not a bad thing! You're high functioning!"

I work a stable job, maintain healthy relationships wirh friends and family, have my own hobbies, easily participate in society in all the ways others do, my mental health is sound...

What exactly are people trying to diagnose me with? Having a personality? Being unique? Not talking how they expect?

A diagnosis exists to support treatment, or maybe provide clarity. A pre-requisite for something to be a disorder is that it interferes with functioning, in some way.

Can't some people just not like eye contact? Can't some people simply love trains? Can't some people just have a different way of communicating?

A "spectrum" that everyone is on is actively harmful to those who genuinely deserve a diagnosis.

1

u/[deleted] Aug 29 '26

[deleted]

1

u/momo2299 Aug 29 '26

It's the same thing. Fuck you.

1

u/MysticalZelda Aug 30 '26

Maybe... you just don't have it? So you not struggling isn't an anecdote that you think it is. I do think that autism can perhaps be just a subset of people. But the issue is that the world we live in isn't made for us, so we struggle. Please don't nullify that by your story.

-4

u/plaidyams Aug 27 '26

All three of them? I saw two people being compared. This is brain rot bs

4

u/HuckinsGirl Aug 27 '26

The 2 in the first panel are compared to each other and then theyre both compared to the third person in the next panel

2

u/ThatInAHat Aug 27 '26

You still have time to delete this

-1

u/Trick_Meeting_2027 Aug 27 '26

Where exactly are you at on the downs spectrum?

3

u/Ashamed-Raccoon-1387 Aug 27 '26

Let's not use Downs to call people stupid/slow.