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Reboot895
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23 Jan 2016, 8:20 am

Here's a question which bugs me.

Every time I share something, people say that I sound like I might have HFA or AS symptoms. No one ever says otherwise.

I guess I should be pretty pleased as I go forward and explaining my life and trying to seek a diagnosis.

But I still come back to the question of what I was like as a child? How can anyone go through life without being diagnosed?

I read about gait, and stimming, routine, change, metldowns and shutdowns. These seem to be relatively key to Autism and Aspergers.

How is it possible to go through life without any of these being seen and then being diagnosed in adult hood? I don't get it.

There seems to be a few options I can think of.

1) The symptoms were visible but not seen by others
2) The symptoms were hidden by the Autistic individual and not seen by others
3) The symptoms were not there and none are strictly necessary for Autism/Aspergers as it is a spectrum disorder, so it is possibly to have Autism without any of these symptoms (or maybe very mild variants of these issues).

So to others that were diagnosed late in life, what's your story? Why were not recognised in child hood?



MjrMajorMajor
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23 Jan 2016, 8:41 am

I would guess that symptoms go unrecognized unless they are quite severe. People may note individual markers, but don't realize the dots form a bigger picture.



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23 Jan 2016, 9:18 am

Every so often someone asks this on WP, as they are curious as to how an entire older generation is only now being diagnosed, and it's baffling as to how nobody in these people's lives ever noticed signs of autism in them before, such as doctors, teachers, parents, etc.

The simple answer is that up until relatively recently, the "Asperger's" manifestation of autism, or for want of a better term "high functioning" autism, simply wasn't even recognized widely as "a thing."

As MjrMajorMajor puts it, symptoms went unrecognized unless they were quite severe, and this happened for generations up until recently.

Even by professionals who might today spot it in a person because they've now caught up with the information.

It was only around something like the early 1990s that medical and mental health professionals began to be more aware of Hans Asperger's findings from the 1940's. And thus they started to recognize the signs and traits in not only the children there and then, but also in the generations that had to grow up prior to this recognition.

Prior to the 90's, the only autism thought to be autism was the severe or classic kind, in which symptoms and traits such as being non-verbal, having unmistakable stims such as rocking and hand-flapping, having severe behavioral markers, etc, things that nobody would have been able to overlook or fail to notice, got those individuals prompt attention, assessment and diagnosis.

Meanwhile, during these same decades prior to the 90s, any child or teen or young person or middle aged person who had not exhibited these most noticeable traits but instead had all the traits that you might say had their dial "turned down several notches" but which still caused difficulties in their lives, were either never noticed or told other things. Things like their sensory issues were them being difficult or silly, so get over it. Things like their meltdowns when overwhelmed by stimulating input were tantrums, so you're just being a brat. Things like their need for routine and horror for change was probably also them just being a brat too, get over it. Things like their social deficits were just shyness or being stuck up, or just being a dick.

So called "milder" symptoms and issues we now know are spectrum-connected were seen as just oddness, mystery behavior in an otherwise seemingly "normal" child, teen or adult, or that the person doesn't seem "normal" but nobody knows why. These people suffered for this. A lot of these people realized they weren't quite cutting life the way they saw most people managed to, felt shame, found ways to even hide, mask or force themselves to not manifest some of their traits, but at a cost of greater stress and mental exhaustion.

This is why there is now a large wave of, if you will, "catch-up" diagnoses happening among people of adult age now. These people struggled with traits that, because they were not the more noticeable severe end of the spectrum, went unnoticed because autism being a spectrum rather than one severe condition wasn't understood until lately.


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camenzind
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23 Jan 2016, 9:37 am

That is an interesting question.

The pupils, students, teachers, and so on always told me that I was weird for so many reasons that I didn't understand. Now, it goes on ; each time I meet someone, this person tells me how "bizarre", "weird", "strange", etc. I am. Thus, these words pronounced for years about my personality are a key to guess I am beyond of normality. Actually, it is my mother who founded out that I am an Aspie in addition to my over-gift. She told me it wasn't normal to have so many troubles with social interactions since my childhood.



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23 Jan 2016, 10:07 am

During my childhood, Asperger's Syndrome was widely unknown, and anyone diagnosed with autism was segregated from "normal" people in some way.

Clumsy? You get smacked for dropping things and bumping into people.

Dysphonia? You get stood up in front of the class and interrogated by the teacher, who would pretend to not see you shake your head, nod, or shrug your shoulders.

Poor eye contact? You get smacked for lying, no matter what you said.

Social awkwardness? The prevailing method was to shame the shyness out of you.

Sensitivity to light, smells, and sound? The prevailing methods involved turning up the lights, waving the stinky stuff under your nose, and turning up the volume while telling the you to grow up and stop whining.

Would a diagnosis of AS made any difference? You bet! The difference would have meant being put on the little bus every morning after the others had gone to school, and taken by the back way to the "Special Ed" building, where you got to play with blocks, sing songs, and practice signing your name all day. Then they'd put you back on the little bus, and drop you off at your parent's home before the other kids came home.

Society of that time seemed to label autistic people as just another kind of "retard" (their word, not mine), round them all up, heard them into a room, teach them only the basics, and then release them back into the custody of their parents. There was no concept of "mainstreaming" and a quality education for an aspie would have been out of the question - an autistic person was a "retard", and that's all that would have been expected of them.

In reality, my experiences were similar to those of Camenzind (previous post), except that I had to obtain a diagnosis for myself, since my "aspieness" seems to have put off my parents - dad hated me while he was alive and mom refers to me as a 'jerk'.

I guess my engineering degrees didn't impress them, eh?


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Reboot895
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23 Jan 2016, 11:03 am

Thanks to all especially BirdInFlight for your comprehensive reply.

So I get the sense that the reason why ASD may not be diagnosed in childhood is because it is a spectrum condition and therefore they be be all or some of the symptoms, some of the issues I said may or may not exist to various degrees of severity, including from none to mild.

Some of the phrases you use about "stop whining" and getting smacked sound familiar. Being sent to bed without any dinner because I didn't like the food. I remember having a terrible stutter at school and being promised gifts if I stopped stuttering. Then being told to stop babbling when relatives came round to visit. I do feel I retreated into my mind a little bit and live there. It's better there than talking and being wrong.

I've been trying to let myself go more recently because I need to be in control, so I've been trying to do that and take back control, and I feel like, in some respects, Im regressing, Im waking up.

I recognise being calls shy, stuck up, a brat, clumsy. I remember some very odd behaviours as a child too. That's for another day.

Thank you all.



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23 Jan 2016, 11:10 am

In my childhood, I learned quickly to mask. When I asked family and friends two years ago (when I was screened) to describe what they believed were my autistic characteristics, they could name few. The definition of an adult diagnosis of autism is that we have lived lives where we have adapted. Of course, few of our cohorts would recognize our characteristics, especially when our childhoods were decades ago and painfully few people even knew what it was.


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23 Jan 2016, 11:13 am

the severe autistics often got misdiagnosed as retarded or deaf and institutionalized if the parents could afford an institution. If they could not afford an institution the "crazy" person was locked in a room. The teens in the neighborhood would throw rocks through the window and run figuring the person would come after them with a knife.

The milder autistics besides being undiagnosed often got misdiagnosed. There were a lot of amateur misdiagnosis. The treatment was tough love. That meant trying to beat what was considered character flaws out of you or throwing you out into the street to fend for yourself. Even if your parents did not beat you, you got bullied in school. Bullying was considered a normal part of growing up. You were expected to figure it out. If you could not you were judged as weak,"homo", a loser in life which lead to more bullying. If you were autistic you were confused as to why you were constantly bieng punished and your response often made things worse.


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23 Jan 2016, 11:24 am

Reboot895 wrote:
Thanks to all especially BirdInFlight for your comprehensive reply.

So I get the sense that the reason why ASD may not be diagnosed in childhood is because it is a spectrum condition and therefore they be be all or some of the symptoms, some of the issues I said may or may not exist to various degrees of severity, including from none to mild.


Thank you all.


It is a spectrum condition but it was not recognized as such. Even today there are many clinicians who do not understand the idea of the Autism spectrum or do know the concept but disagree with it believing the mild end is not "real autism" but a whining, excuse making lazy person with a sense of entitlement.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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23 Jan 2016, 11:25 am

Reboot895 wrote:
Here's a question which bugs me.

Every time I share something, people say that I sound like I might have HFA or AS symptoms. No one ever says otherwise.

I guess I should be pretty pleased as I go forward and explaining my life and trying to seek a diagnosis.

But I still come back to the question of what I was like as a child? How can anyone go through life without being diagnosed?

I read about gait, and stimming, routine, change, metldowns and shutdowns. These seem to be relatively key to Autism and Aspergers.

How is it possible to go through life without any of these being seen and then being diagnosed in adult hood? I don't get it.

There seems to be a few options I can think of.

1) The symptoms were visible but not seen by others
2) The symptoms were hidden by the Autistic individual and not seen by others
3) The symptoms were not there and none are strictly necessary for Autism/Aspergers as it is a spectrum disorder, so it is possibly to have Autism without any of these symptoms (or maybe very mild variants of these issues).

So to others that were diagnosed late in life, what's your story? Why were not recognised in child hood?


My parents sent me to shrinks all of my life (late 1960's onward), but aspergers didnt exist as diagnosis in the USA until 1994, but even then the lady shrink I went to as late as circa 2005 "had never even heard of asperger's" until my sister, and mom suggested that I might have it. So that shrink read up on it over night, and then "officially declared" that I had it! Lol. But I didnt get the real test and the real official diagnosisis until a couple of years ago-years later- from a different shrink who specialized in it (in fact I was probably one of the last Americans to be officially dxd with aspergers because they elimiinated aspergers as a label in the subsequent DSM shortly after- and now lump it under HFA). And I am not sure, but I doubt that "high functioning autism" itself was recognized as diagnostic label until decades after Kanner came up with the concept of "classic autism"( basically whats now called "low functioning autism"). Most autism resources have always been directed toward small children and their parents. The whole notion that there might have been autistic children in the past who have now grown up to be autistic adults didnt dawn on the medical community until recently.

So: long story short: the set of traits/symptoms now labeled as "aspergers/HFA" WAS recognized in me early on in my childhood as being something that needed to be "fixed" somehow. But they were not labeled with the modern diagnostic labels of aspergers, or HFA.



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23 Jan 2016, 11:33 am

^
Following up on what I said above.

If you (the OP) had been an American you have been 28 before aspergers would even have been recognized as an official diagnostic category. And you would have been near forty before you would have likely encountered a shrink who had "even heard of aspergers" even after that!

Dont know about the UK. But it was probably similar. So even though youre a generation younger than me you still would not have been diagnosed with aspergers until late in life (much like me) had you been an American. And its probably similar in the UK.



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23 Jan 2016, 12:00 pm

ASPartOfMe wrote:
the severe autistics often got misdiagnosed as retarded or deaf and institutionalized if the parents could afford an institution. If they could not afford an institution the "crazy" person was locked in a room. The teens in the neighborhood would throw rocks through the window and run figuring the person would come after them with a knife.

The milder autistics besides being undiagnosed often got misdiagnosed. There were a lot of amateur misdiagnosis. The treatment was tough love. That meant trying to beat what was considered character flaws out of you or throwing you out into the street to fend for yourself. Even if your parents did not beat you, you got bullied in school. Bullying was considered a normal part of growing up. You were expected to figure it out. If you could not you were judged as weak, "homo", a loser in life which lead to more bullying. If you were autistic you were confused as to why you were constantly being punished and your response often made things worse.
Quick check ... yes, we're the same age. We seem to have had similar experiences. I was raised in central lower Michigan. Are you a mid-westerner, too?

I'll add that if the parents could afford an institution, the child simply "went away" without explanation, and he or she was not mentioned to anyone outside the family after that. This is the prime reason for my claim that NTs are likely to perceive disabilities - especially disabilities of cognition or perception - as somehow morally wrong.


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23 Jan 2016, 1:43 pm

I'm 44 and when AS was recognized in the DSM I would have been about 22 or 23. By that point I had adapted to the NT world somewhat. I DID stand out in elementary and junior high (I was reading books well beyond my age range). I had few friends and was bullied constantly (as others have mentioned here). I had no idea why people didn't like me.

I made up my mind (in 8th grade) that I was going to make friends when I went to HS. I bought or borrowed every book I could find on body language, salesmanship, making friends, etc. It became a special interest. I became quite adept at seeming like a somewhat regular guy.

I self-medicated with marijuana and alcohol from 14 years of age until about 23 years of age and that's how I hid the anxiety and depression (not entirely - but enough to get by). I played music well (special interest) so that got me a lot of passes on strange behavior. People just thought I was "artistic". I used that cover well into adulthood. I've always felt more comfortable around musicians or artists or people who are a bit eccentric. They are an easy crowd for someone like me to blend in with.

My sensory sensitivities were very present (misophonia primarily) but I learned not to talk about them because it never went over well. I found ways to explain why I was leaving the room when someone was eating.

I also bought books on cognitive behavioral therapy (CBT) and modified my black and white thinking just enough to function (somewhat) in the real world.

I was finally diagnosed with AS a year ago. I am realizing that I spent a lot of energy (and brain cells) trying to pass as normal. I did have a nervous breakdown when I was in my early 20's and I think it was partly from wearing the "normal" mask for so long.

So to answer the OP, for me it was largely option #2 that you listed. I hid the symptoms with book-learned techniques and drug use. It was also a bit of #1. The symptoms were there but most people just attributed it to eccentric behavior. They didn't really see it.



camenzind
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23 Jan 2016, 3:00 pm

Boo Radley wrote:
I'm 44 and when AS was recognized in the DSM I would have been about 22 or 23. By that point I had adapted to the NT world somewhat. I DID stand out in elementary and junior high (I was reading books well beyond my age range). I had few friends and was bullied constantly (as others have mentioned here). I had no idea why people didn't like me.

I made up my mind (in 8th grade) that I was going to make friends when I went to HS. I bought or borrowed every book I could find on body language, salesmanship, making friends, etc. It became a special interest. I became quite adept at seeming like a somewhat regular guy.

I self-medicated with marijuana and alcohol from 14 years of age until about 23 years of age and that's how I hid the anxiety and depression (not entirely - but enough to get by). I played music well (special interest) so that got me a lot of passes on strange behavior. People just thought I was "artistic". I used that cover well into adulthood. I've always felt more comfortable around musicians or artists or people who are a bit eccentric. They are an easy crowd for someone like me to blend in with.

My sensory sensitivities were very present (misophonia primarily) but I learned not to talk about them because it never went over well. I found ways to explain why I was leaving the room when someone was eating.

I also bought books on cognitive behavioral therapy (CBT) and modified my black and white thinking just enough to function (somewhat) in the real world.

I was finally diagnosed with AS a year ago. I am realizing that I spent a lot of energy (and brain cells) trying to pass as normal. I did have a nervous breakdown when I was in my early 20's and I think it was partly from wearing the "normal" mask for so long.

So to answer the OP, for me it was largely option #2 that you listed. I hid the symptoms with book-learned techniques and drug use. It was also a bit of #1. The symptoms were there but most people just attributed it to eccentric behavior. They didn't really see it.


Hello BooRadley,

Did that diagnostic change your everyday life ? or something else ?
How do you calm down your nerves when you are anxious ?



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23 Jan 2016, 4:17 pm

The diagnosis was a relief at first but after a few weeks I became quite depressed. I've heard there is a period of adjustment for many people who learn late in life that they have AS. I was no exception. I'm still reprocessing a lot of events in my past through the lens of AS. I'm guessing I'll be doing that for some time. A big positive is I hope to mend some friendships and family relationships that were damaged over the years. Not counting on it working but I'm going to try.

You asked about what I do for anxiety -- I usually engage in a special interest or obsession or I'll stim (hand wringing is my favorite). That's the best cure I know. Beyond that I practice mindfulness (learning how to breathe is essential) and I also use the cognitive behavioral techniques (CBT) of Albert Ellis and Aaron Beck for the heavier episodes or panic attacks. There are probably newer authors with more current research that you could read but Beck and Ellis' books have helped me tremendously with anxiety and even depression to some extent. The other keys that have helped me over the years have been good exercise, diet and rest. I rarely have all of those going at any one time. I usually start with one of them as a goal (like trying to sleep more) and then sometimes the others will fall into place. A great therapist doesn't hurt, either.



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23 Jan 2016, 6:11 pm

Fnord wrote:
ASPartOfMe wrote:
the severe autistics often got misdiagnosed as retarded or deaf and institutionalized if the parents could afford an institution. If they could not afford an institution the "crazy" person was locked in a room. The teens in the neighborhood would throw rocks through the window and run figuring the person would come after them with a knife.

The milder autistics besides being undiagnosed often got misdiagnosed. There were a lot of amateur misdiagnosis. The treatment was tough love. That meant trying to beat what was considered character flaws out of you or throwing you out into the street to fend for yourself. Even if your parents did not beat you, you got bullied in school. Bullying was considered a normal part of growing up. You were expected to figure it out. If you could not you were judged as weak, "homo", a loser in life which lead to more bullying. If you were autistic you were confused as to why you were constantly being punished and your response often made things worse.
Quick check ... yes, we're the same age. We seem to have had similar experiences. I was raised in central lower Michigan. Are you a mid-westerner, too?

I'll add that if the parents could afford an institution, the child simply "went away" without explanation, and he or she was not mentioned to anyone outside the family after that. This is the prime reason for my claim that NTs are likely to perceive disabilities - especially disabilities of cognition or perception - as somehow morally wrong.


I am from Long Island. Every neighborhood had a "haunted house" were the "crazy person" lived. Now upon looking back do I realize what the situation possibly was. According to the book Neurotribes in the rare case a child was diagnosed with Autism the parents were told to never mention the child and remove any evidence the child lived there, and go to therapy to get rid of whatever it that made them make thier child non human.


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