Why Do People Hate Self-Diagnosers?

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Ah, but that's exactly what did used to happen in previous decades until relatively recently, b9.

That's what I was saying in the latter half of my post earlier (although mine was a long post and I don't blame anyone for not getting all the way through it).

I pointed out that there are indeed generations of older people who are only now being formally diagnosed, who of course did show signs from birth, but back when they were babies, infants, children and even young adults, those signs, even the clear ones, were never interpreted as autism --- because in those days even professionals had poorer understanding of the autism spectrum than they do now.

There was a time when only the most severe autism was noticed and quickly diagnosed as autism at all. All other levels of the spectrum were overlooked for generations even though the children of those generations indeed showed traits.

There are people today in their 50s and 60s, for example, who had autistic behavior throughout their childhoods, but because some of them were on the part of the spectrum that was "milder," combined with the lack of knowledge among teachers, GPs, mental health professionals and others who should have "taken them aside for assessment" as you rightly say, they were often overlooked or simply dismissed as "difficult/possessed/insane/unstable/tantrum-prone/spoiled/bad/shy/awkward/weird/just odd" or some other interpretation, even while actually being autistic all along, just, nobody sent them to be evaluated. (Although of course, there's still the chance that someone IS just "awkward, shy, or unstable" and it's not because of autism -- I'm just speaking hypothetically about a child who is indeed autistic but growing up at the time when their autism wasn't assessed).

Those same people would have been assessed swiftly as children today, if they were children today -- but that's only because professional awareness has improved. Instead, they grew up in a time when their behaviors were not thought to be that of autism, even though it's would be known now that it was (had the person been assessed).

This actually is what happened previous to, I don't know, maybe the 90s more awareness came to the mental health profession, and also to people in a position of child care such as parents, teachers, family doctors. Everyone before then would indeed have shown the traits, but unfortunately be thought of as something other than autistic.

Those generations are only catching up on discovering what they were all along may have been autistic after all. Just as only now are even the professionals themselves catching up to this.

Last edited by BirdInFlight on 21 Jun 2015, 6:33 am, edited 3 times in total.

Not always true. I was not raised by my parents, but my grandma. Born in the war. She likely does not know autism exists. None of her kids had it or anyone in her family. CAMHS asked my parents about if I did certain things, answers being yes, and yet they did not know they were signs of autism in toddlers. Autism runs in my dad's family and yet they... didn't know what it looks like. School reports all say about how little I spoke and that I didn't interact. But nobody took action. My grades were fine so they didn't think much of it. I'm sure this isn't unique. It took a hospital visit for anyone to notice there was actually anything more to me than being shy. Now I don't know what yet, but given the family history and the symptoms since being a toddler I wouldn't be surprised if it is autism. I'm 18 and somehow got through the system. CAMHS couldn't believe it - said a lot of what I did "very ASD", pointed out a lot of things. Some people trained in dealing with suicidal kids also noticed it and only then decided to let me go.

Now if people dealing with mental health notice it almost instantly and yet my parents didn't even know the signs it does say something - that this can happen to others.

To iliketress --

Yes, that's what I'm saying -- many people do go by "unnoticed" because whatever carers are around them, including parent or parental figures, guardians, grandparents, teachers, the family doctor, etc, either do not know the signs, or do not notice the signs in the child, or do see behaviors that are not "the norm" yet don't know what they are or what to do about them.

Thus that child gets overlooked and never taken for an assessment, even though they may indeed be on the spectrum and the pursuit of an evaluation could have revealed it early. Yes.

I would say, though, that the overlooked case -- though it clearly can still happen today -- is a phenomenon much more heavily represented in older generations at the moment, because in the last maybe fifteen, twenty years, people in a position of child care or observation, and also the medical and mental health professions, are much more alert to seeing signs of autism in a child or young person today, than they were in previous generations.

But it is a little scary that no matter which generation one is in, everything depends on someone else who takes care of you even noticing what to look for, or knowing that a behavior is autism-driven and not just something annoying they don't know how to punish you for (in my case!)

Actually apart from my daughter everyone I know is NT as well

Believe me, NTs are like clones, everyone seems to think the same.

One of the best tongue in cheek descriptions of NTs comes from a poem by an unknown author
"I wish I was a moron, then I wouldn't give a damn, I wish I was a moron, My god! perhaps I am!!"
The end...

I have the same experience, though am not diagnosed at this time. But, I once found report card after report card stating I was very quiet and did not interact with other kids. I was offended at first, especially since I don't remember this. But I'm sure I don't remember because I was only doing what felt natural, though it was striking enough for the teachers to notice. I still get comments at work or in other situations about how quiet I am, but I have no clue how to integrate myself into a conversation. I always wait for some obvious break, while everyone else just chats back and forth as if they all have some script I wasn't given. After five or ten minutes they look at me and ask why I haven't said anything, and I just wonder when I was supposed to be able to participate.

Same here for me (was diagnosed last year). I was practically mute during a huge chunk of my school years, and this was noted by teachers too. But because it was the 1960s, nobody did anything about it -- it's only as an adult that I retrospectively realized I fit the term "selective mutism" when a child.

Something else I remember though -- my mother did once mention to me that the school used to want to speak to her about me, and that she pooh-poohed their concerns and didn't allow anything to happen. She said she was protecting me because she thought any undue attention would cause me even more stress than I already displayed.

She's deceased now and so I can't ask for more details and get to the bottom of that. But I've always wondered if in fact, in my case, someone DID notice I should be evaluated, even in the 1960s....but my mum stopped it out of a misguided sense of not stressing me further.

Last edited by BirdInFlight on 21 Jun 2015, 7:27 am, edited 1 time in total.

i am sorry i did not read any posts in this thread before posting my own.


they did not need to be interpreted as autism.
if someone can not operate within the system to a degree that does not pose insurmountable obstacles, then they will be removed from it in most cases without knowledge of the reason. the reason is either assessed or not according to the conditions of the families environment (whether they can afford it or whether the government needs to sort it out).

in my case, i was assessed at 3 months for preliminary signs (due to unresponsiveness) and then confirmed at 6 months, but if my family were poor, then i would not have been assessed at that time. i understand that.

it was first decided to try me at a normal school to see if i could learn to function within it, but it quickly was apparent that i could not. the problems were insurmountable (failure to acknowledge instructions and spontaneous aberrations) and i could not stay there. it is surprising that so many people manage to scrape their way through with a moderate level of autism. i am not intellectually ret*d but i was unable to behave in a way that was manipulable by teachers.




i went through years of association with psychiatrists in various special schools who tried to bring my mental capacity into alignment with the requirements of the real (human) world, and during that time i learned a lot about autism. there is no such thing as mild autism. either one has it or one does not.
the intellectual capacity native to the person afflicted with autism determines their functionality, and the personality native to the person afflicted with autism determines their adjustment. the 2 are not mutually exclusive.

it is possible for someone to have traits that resemble autism that are not caused by autism. they do not usually come to the attention of the moderators of the smooth flow of the system. got to go...phone call

b9, while yes, of course it's possible to have traits that resemble autism but are not caused by autism, I beg to differ about your comments on autism either being mild or severe enough that the system can't ignore it.

There are indeed levels of autism among which "mild" is still considered to be genuine autism. Yes, one either does have autism or one does not, but I think it's fairly well documented, isn't it, that there are levels -- it's a spectrum.....

Having said that, I will say fully that mild is a problematic word, as nothing feels mild when one is in the middle of a meltdown or other distressing experience.

But I disagree with you that it's only if someone's autism is so severe that it's clear to everyone, parents, teachers etc that this baby or child needs to be assessed, that they truly have autism and others cannot possibly have it.

It's well established, as far as my understanding has gathered, that there are indeed levels of impairment that can seem "mild" enough to be either overlooked or dismissed by a parent, teacher, family doctor, even though that impairment does affect the child experiencing it badly enough for them to be suffering from it being overlooked by everyone else.

And there are levels of impairment considered "high functioning" (again, another problematic term but it's all there is) that are still none the less qualified to be diagnosed as autism/formerly Asperger's/HFA.

It's these higher functioning children that were indeed overlooked more often in previous generations, but that doesn't mean they are any less on the spectrum.

I'm speaking here not just of any kid at all who has ever had traits, but instead I'm speaking of any person who has now been diagnosed as an adult, but were not diagnosed as a child not because they didn't show signs but because those signs were overlooked or even called something else.

I'm an example of this. I finally pursued an evaluation last year at the age of 52, and I was diagnosed as having what would have up until recently been called Aspergers and is now ASD.

When I was child I displayed symptoms and traits that are clear today as being that of HFA/ASD, but which in those days nobody understood well. Because I was/am relatively "high functioning," all my "more normal" moments, for want of a better term, counterbalanced my more challenged/challenging moments enough in the eyes of 1960s adults around me, that nobody thought "autism" even though if today's specialists could have time-traveled to see me as a child, they would have diagnosed me right away, I feel sure. They've diagnosed me now.

I was impaired significantly even by my "milder" traits (I really hate that word when I think about it). But back then you had to be even worse-affected to be sent for evaluation for anything.

Interesting story. My problem growing up was not really understanding HOW to interact with others. Looking back now it's not a problem. My own children don't seem to have my issues. What happened with me, because I was so out of touch with others, is every time I tried to play with others, I'd make some minor mistake or get set up by classmates. I was always encouraged to play with other kids my age, but every time I did I got in trouble. It was demoralizing.

My kids don't have MY issues, which is a good thing. But my oldest son has the usual growing pains of getting beleaguered when someone doesn't like him or says something mean, and my daughter has FREQUENTLY struggled with discipline in school (we think the teacher is nitpicking, but rules are rules). So we've had a lot of talks with them, many of which are drawn from my long experience as a loser. To whit: Haters gonna hate, so we don't hang out with them or listen to what they have to say. So when dealing with haters, if you care at all, do what it takes to win them over--they usually are just jealous or, like anybody, they want something and you just haven't figured it out yet. With discipline problems, MOST of the time it's guilt by association. So stay away from bad influences. Stay in closer proximity to teachers and seek to be an influencer rather than be influenced. You'll correct the bad behavior of others, win the respect of teachers, and the scum will take care of itself.

As to conversation--I'm terrible at it, too, so don't feel bad. Here's the trick to it: Forget about being a real participant. People like people more when they listen, not when they talk. Make your role in a conversation more about keeping others talking rather than focusing on yourself or your experiences, UNLESS relating your experiences happens to actually be relevant. I don't follow football AT ALL. I just don't understand team sports or why we're so obsessed with it. But if I'm around a bunch of big guys, I can just confess my own abysmal ignorance of the sport and say, "Hey, why was that last play of the SuperBowl this year such a big deal?" You might have walked into a dead room, and now you're going to have a tough time getting people to shut up. Generally you want to avoid politics because all that does is piss people off. But just listen to people. Don't pretend you know what they're talking about. Just pick out something for them to school you on, ask questions, restate their explanations in your own words to show you understand what they're talking about, and you can keep this going for hours. And they'll think you're the most gifted conversationalist on the planet.

Stuff like that takes zero skill. As long as you genuinely care about other people, that's all you need. It's hard to do things like this if you're more absorbed in your own interests. For some, this is a near impossible task, but it does work.

Everybody here...especially from Page 15 on, brings up excellent, pertinent points amid a civilized discussion.

Yep, "self-suspecting" would solve lots of problems.

I'm a weird case: I was actually diagnosed with autism circa 1964, then diagnosed with "brain damage" a little later.

Hi kraftie -- didn't recognize you without your usual avatar!

Yes, your case seems like the reverse of what can happen -- it reminds me of a reversed version of Susan Boyle, the lady in her 50s who won a UK talent show. As a child in the 1960s, she was initially diagnosed with a vague statement of some kind of "brain damage," yet diagnosed with Asperger's (while it was still called that) when properly assessed (due to extreme stress) just a few years ago.

She's a good example of how an older generation person could go undiagnosed throughout childhood even while having clear issues that may be interpreted as something else according to the knowledge base of that era.

In the early 70s I was taken out the the mainstream for evaluation for a day or two. They couldn't do anything for me back then so I was returned to my normal classes.

While I had my issues I also showed promise--I convinced a teacher to let me collect stamps of the boxes used to ship books. In a social studies class I zipped through the material so fast the teacher let me read the daily paper--which--IIRC--I was the first one to read it each day.

Some if us who are self diagnosed do want an official diagnosis but keep getting turned away. It is not always so easy once you are an adult and no longer a cute little kid. If you don't have insurance most therapist won't even talk to you.

That's IF you can find an autism specialist. They are all in the big city and I can't handle city traffic and neither can my mother. All the rest of my family are in other states and I have no close friends who could give me a ride.

I don't want it for welfare. I think it is disgraceful to be on disability if you are capable of working. That money is for those who really need help. But I'd like the validation. That yes, this IS the answer I've sought my entire life.

All my life I've been called lazy and worthless . (among other things.). People have told me to act a certain way and attacked me verbally when I could not. I have been singled out. I have even been told I am acting stupid because I WANT to be 'special'. I've never wanted to be different. It would be nice to have proof that I am not a bad person or a loser.

And yes, it would be nice to be able to get help if I need it. My mom helps me more than anyone can ever understand. But no one is immortal. My mom has always had fragile health. The only reason she is still with me is she's full of piss and vinegar, to stubborn to die. She may be here another 50 years.

But one day I will be alone, and I worry I'll break when she goes. I'll need help then and I cannot ask for it because I have no proof that I don't function as well as others.

But what can I do about it? Even now that I have a job that offers benefits I can't take time off to see a therapist. And even if I could they'd probably just refer me to a specialist I can't get to.

Asperger's didn't even show up in the books until the mid 90s. And even then it took years for most professionals to learn to recognize it. Had I been born 10 years later I might have gotten my diagnosises. They did have me evaluated 5 ways from Sunday. They just didn't have a name for it.

I found a report card mom kept from my first school once. (My dad was a Marine, I can't remember the name of that school now.) It labeled me as emotionally disturbed. That was the best they could do at the time.

Later ADHD came in to vogue. I wouldn't look at the teachers so I was attention deficient. (despite getting straight As on all my tests.) And I was always either rocking at my desk or walking in circles so I had to be hyper active. So I was diagnosed with ADHD. But I knew that wasn't it. It was just the best they could do at the time.

I no longer have the papers to even validate that diagnosis. I tried to get copies once, but was told they destroyed records after 10 years. It had been 11 so I have no proof of any disability.

Great Post.


I am not convinced that people who “self-diagnose” would agree with this.

After I “discovered” Asperger’s (in December 2012) and spent hours (easily > 1000 hours) researching Asperger’s (along with other similar conditions), I began to “self-suspect” Asperger’s. Then again, I began to “self-suspect” a lot of other conditions as well (Schizoid, Obsessive Compulsive Personality Disorder, Schizoid, General Anxiety Disorder, etc., etc.).

Before that point, I just figured I was a broken person. I noticed differences between myself and my siblings (primarily social, but also things related to obsessions, anxiety, etc.). But, I had no explanation. I just figured I was a broken person who didn’t belong (in the world).

The “discovery” of Asperger’s brought back a flood of memories from my childhood that I had conveniently forgotten. This includes several trips to the child psychologist (during 3 different stints), trying to understand why I was struggling and not with the program.

With that being said, I only “self-suspected”. I had little confidence in my suspicion. Heck, I still didn’t have absolute certainty, even after I was diagnosed. I always figured, from a very young age, that I was f*cked up, because of my upbringing (my father was very strict). I just figured that “introversion” explained me. I just figured other introverts were exactly like me. I never spent that much time observing other human beings. I didn’t spend that much time interacting with other human beings. I spent a lot of time by myself. After all, I figured that’s what introverts do. So how else would I know. In fact, it was not until I participated in a research study that I became more accepting of this diagnosis.

Anyhow, I think the difference between me and other community members (who I read about, not necessarily in this thread) is that their confidence (with “self-suspecting”) is much, much higher. It’s almost like they have absolute certainty. This is something I could never personally understand (how anyone can have such clear self-awareness).

Interestingly, it’s only now, after accepting my diagnosis, that I have become that much more self-aware (of my differences). Perhaps, this is simply because I have begun to accept the diagnosis as an explanation.


My first visit to the child Psychologist was in 1971, when I was 8. I was having social issues at school. These issues began when I was 3 (attending nursery school). But my parents finally decided to investigate cause. Because I performed OK in school (I wasn’t technically gifted, but tested close enough to be included in some of the gifted classes in elementary school), the child Psychologist simply attributed my issues to anxiety.

Speaking for those of us who dislike change, I formally request a return of the old kraftie avatar