Are those of us who avoided diagnosis in childhood lucky?

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I am very glad I didn't know as a child. I talked about it at length here http://www.wrongplanet.net/postxf225941-0-15.html
I still feel the same way.

I was diagnosed with Asperger's when I was 8, and I never liked it one bit. I feel like 8 years old was too young for a female with a very mild case of Asperger's to be diagnosed with the ASD. I can remember a lot of my childhood, and I have lots of photos and stuff, and I just seemed like a typical kid. I don't understand how they got me a diagnosis so quickly. Well it was probably because I showed no peculiar signs from birth to 4 years old, and I interacted typically at preschool and so on. Then when I was 4 and started school, I suddenly showed behaviour that caused concern for teachers and my parents, and at first the teachers thought my behaviour was caused by child abuse at home, so my parents nearly had me and my brother took away. That frightened my parents so badly that they went a long way to look into why I was behaving this way, because they definitely did not abuse me. Then when I was 8 I suddenly got this label, and I really hated it ever since. I still do now. I can't stand people mentioning it out loud in front of me. I wish I never got diagnosed at such a young age. I am mild enough to have plodded on in life without knowing I had an ASD, or just guessing I had some sort of ASD but not actually having a label that follows me around. Plus I had a good relationship with my parents, so I probably would have been fine.

But no. I had a diagnosis inflicted on me. That word ''Asperger's Syndrome'' still haunts me to this day. I can write it, but I cannot say it out loud.

I think people with "warning signs" are in a different group from people who really aren't understanding the social world around them and/or have major problems conversing or communicating at all. Avoiding a diagnosis based on warning signs is likely a good thing. A diagnosis needs to be of something wrong, not something different.

I think people with "warning signs" are in a different group from people who really aren't understanding the social world around them and/or have major problems conversing or communicating at all. Avoiding a diagnosis based on warning signs is likely a good thing. A diagnosis needs to be of something wrong, not something different.

The boundary between wrong and different is grey, to the extent that it can be identified at all.

Life can feel wrong if the environment is sufficiently irritating and hostile. The same life can feel alright if the environment is soothing and accommodating. For children, the environment created by parents and school determines to a large extent whether a child is made to feel "wrong".

An aspie child with a given severity of "symptoms" may find itself in one of the following three scenarios:

Scenario A: The child is really lucky by having the right parents and the right school environment. No diagnosis is needed, and the effects of diagnosis on the child could be negative.

Scenario B: The child is less lucky, by having ignorant parents or the wrong school environment. A diagnosis may help to educate parents and may help to make changes to the school environment.

Scenario C: The child is really unlucky, by having negligent parents and the wrong school environment. A lack of diagnosis will make life a living hell for the child.

I wish that I could have been identified as a kid and given GOOD HELP. Specifically, psychodynamic therapy for my social anxiety issues, CBT for some of my more unreasonable anxieties and self-hate, and pragmatic language therapy for a lot of the communication nuances that I just didn't, and still don't, get.

That, however, is in an ideal universe.

Considering that I was 16 when Asperger's hit the DSM, being identified as a kid would have taken parents who had a special interest in the relatively obscure work of relatively unknown European psychologists. And THEN they would have been on their own to teach me...

...which they did anyway, without knowing what they were doing, because they were Aspies and BAP types possessed of large doses of good old hillbilly common sense.

When I take into consideration all the misinformation that's out there-- misunderstandings about empathy that border on outright lies, ableism, misguided beliefs about what ASD folks can learn and do, deliberate disabling by pounding those beliefs as facts, the tendency to marginalize us and ignore what we say, and the abuse of medications...

...yeah, I feel pretty lucky to not have been diagnosed as a kid. I think I would have just given up.

It might be better for today's kids. Maybe.

I guess our job is to continue being noisy in the hope of making it for-sure better for tomorrow's kids, right??

I know this is OT, but I wonder that whenever I see that stat as well. I've tried to hunt down an original source and have yet to find one. The thing that makes it seem most dubious to me is that it see it interchangeably used as 75-80% of Aspies and 75-80% of autistics. My inclination is that the original stat (wherever it's from) is 80% of autistics (though it's still unclear if the original reference is inclusive or exclusive of Aspies) are unemployed, but the number is likely a bit lower for Aspies. There's a site poll here that shows roughly 60% of the WP community is employed in some capacity. Though it's obviously not scientific so make of that what you will.

If I had sane, rational. loving and devoted parents and was living in a more enlightened community and era - I believe being diagnosed as a child would have been a good thing. There is no doubt in my mind that both myself and my brother would have been considered obvious HFA or Asperger's if people knew about it back in the 1960's - But they didn't. If a person is diagnosed at a young age even today but does not have loving and devoted parents and a supportive atmosphere - the diagnoses may not necessarily be that helpful. It might even put them into a mindset of limiting themselves.

On the other hand not being diagnosed led me to doing things that people with ASD's might generally be advised not to do - like joining the USAF right out of high school and later on going into a career working in hospital intensive care units and working, living and traveling all over the world. It is possible that had I been diagnosed at an early age I would have been shepherded away from doing such thing for fear that I wouldn't be able to handle it.

I don't know...I sure don't feel "lucky." From an early age I knew something was very different about me and that those differences made it difficult to function at school or outside of my home, which was an unhappy place already. I had problems with acting out, throwing tantrums, making noises, and following directions. But nobody ever told me there was a good reason for it, leaving me and everyone around me to assume I was simply a bad kid, a weirdo and a discipline case. Later in life I withdrew almost completely into depression and anxiety and entered a pattern of slowly declining functionality which I'm still stuck in now.

If I'd had any guiding figures around me who cared about my feelings and knew anything about child development, and if my school hadn't been so strict and ignorant of the world outside the gloomy tenets of Catholicism, I might have had a chance to be diagnosed much earlier. And if my parents had thought about what they were doing and waited until they had a functional marriage to conceive me, then none of this would have happened.

It's a tricky one which I often ponder myself.

It would have certainly been different. Of that I can be certain. Teenage years are bad enough as NT, but trying to understand this unidentified thing that somehow makes you so different lead to years of confusion, depression, self-loathing, self-harm, suicide attempts. Even at 26 or so, I was still trying to work out if I was maybe a psychopath or something like that. Answers would have been nice.

Still, I miss the ever-optimistic hope that, if I just try to fake it a bit longer, put a bit more effort in, then I will get th hang of all that social stuff. In a way it feels very bleak now that all I can realistically hope for is to get more and more used to wearing a social mask.

I can't speak for any of these kids who allegedly use the diagnosis as an excuse but, despite no ASD diagnosis, I was at least thought to have dyslexia and, rather than fall back on it as an excuse, I outright refused to accept special treatment or accommodations - to my mind, a test was a test and I wanted to be judged on a level playing field and not be given extra time etc. That, ironically, probably came from my ASD rigid thinking.

I did see a psychiatrist off and on for a few years in childhood-at the demand of the school district. Back then, Asperger's wasn't widely known (I was born in 1966). I think they knew something was "wrong" with me, and I kind of knew it myself. I wasn't diagnosed as having Asperger's until this April.

I would have liked to have been diagnosed as a kid so I could have received specific treatment for it. I have spent most of my life feeling different, and hating myself. I have a fairly mild level of it, as I have been married for 15 years and have been employed in higher education for 18 years. However, none of that really occurred until age 30 or so for me. I was terrible at romance through junior high, high school and college. I couldn't get the normal high school jobs that most people did. Even today my social skills aren't that good and I cannot read nonverbal cues from people at all.

I do wonder how much different things might have been if I had been given social skills training and help to overcome the deficits I had. My parents were pretty supportive but they had no idea what was really going on. I spent quite a few years addicted to alcohol and marijuana to deal with the social anxiety and self loathing. Even today, I still suffer from low self esteem (I have a Ph.D and have been married for 15 years, but that doesnt seem good enough), depression, and self loathing. I am getting therapy for it but 45 years of feeling one way about yourself is very hard to overcome.

You can go undiagnosed as a child and still wind up a hermit or part of the 75% even though never diagnosed, never labelled, never identified, but simply because of the problems caused by your traits and symptoms all by themselves.

I was born in 1961, and in those days the only autism even some so-called professionals really knew about or focused on was "severe" classic autism. Everyone else "didn't have it." Everyone else exhibiting the traits we now know of those of other parts of the same spectrum, were, back in the old days, just thought of as strange, or shy, or difficult, weird, introverted -- the list goes on.

These other labels were an injustice because they meant that the child who actually happened to be autistic but too high functioning to be identified, didn't get help with the things their autism may have been hampering in their development and their lives and their potential.

When you don't know what something is, you can't take steps to guide that child into their best functioning and their utmost abilities.

I wound up chronically unemployed and then unemployable, living like a hermit, and many other problems even WITHOUT the diagnosis being applied to me when I was a child or young person. I had to struggle my way through to making some kind of life for myself. I'm not making excuses; I'm okay. But I do think I needed different help to maximize my potential, and going undiagnosed because of the generation I came from meant I didn't get it.

I just got diagnosed last month at the age of 52. I can't help feeling that most of the profound struggles my life and anything I've managed to do for myself wouldn't have been quite so painful if I -- and the adults charged with guiding me -- had had early awareness of what exactly was going on in my brain all my life, and therefore also early guidance into how to cope with my differences so that they don't hamper my potential.

I'm not saying I would have turned out to be the CEO of a billion dollar company, with a fabulous house and loving husband and happy kids if I'd only had early diagnosis and guidance. I know I never would have been capable of those things ever, anyway. I'm not stupid or deluded, and I'm not making excuses.

But I do think my complete confusion about myself and my failings did not exactly serve to help me make the best of my life.

On the other hand, a friend pointed out to me the other side of the coin....that because it was the 1960s and awareness was still so much in the "Dark Ages" anyway, if they HAD identified my autism back then, I might have been institutionalized unnecessarily because they didn't know what else to do in those days, and I might have even bigger problems today because that would have also been the wrong track for me personally. She suggested maybe I dodged a huge bullet.

Jbw, more unusual though it was, my past situation (described earlier in this thread) represents a 4th scenario. It counts too...

I am glad I was not diagnosed as a child because I don't think they had adequate help back then. I would have probably been given therapies that would not have helped and would have probably made my life worse. Asperger's was not well enough known and there was no such thing as Autism Spectrum and absolutely no knowledge of Misophonia from which I also suffer. So I would have probably been treated as a child with mental problems like schizophrenia and probably been super drugged up or possibly even institutionalized. So I am really glad they did not know enough to diagnose me then.

These days diagnosis are being used as reasons and opportunities to sell and dispense unneeded medications that can have quite negative consequences. Once people know you have a label you end up having the stereotype superimposed on you, therefore put in a position where you have top prove your worth at just about anything. That gets very old very fast.

I wish I had known, but there was 0 support where I grew up.
It would have saved SOOOOO MUCH confusion and angst to have this explanation to help me understand myself.
It was not to be.