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androbot01
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03 Nov 2014, 7:45 pm

do you feel part of a lost generation or the last generation of undiagnosed autistics. I was diagnosed with Asperger Syndrome at 39 and had a re-evaluation this past summer which resulted in HFA with GAD and depression.

But being diagnosed so late was a little strange. While once I was re-assured that I was fine, I'm now written off as a cost.

But, I do feel for the first time that society is working with me rather than against me. For the first time I have a sense that my reality and the reality of the neurotypical mainstream are connecting. If only by mutual acknowledgment.

So, to those who slipped through the cracks, how did you feel when you were caught?



AspieUtah
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03 Nov 2014, 7:57 pm

I was screened (not diagnosed) in January when I was 51 years old. I agree with Tony Attwood, Ph.D., that diagnoses of adults with AS and other ASDs is the new boom in ASD research. Unfortunately, too many diagnosticians are clueless about the differences between children with AS and other ASDs (who have been researched ad infinitum), and their adult counterparts.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


grbiker
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03 Nov 2014, 8:27 pm

I was first diagnosed with ADD- Inattentive about 4 years ago, but that left a lot of unanswered questions. Then I was the dreaded "wife diagnosed" Aspie. A different therapist gave me a weak diagnosis of Aspergers traits, then I was diagnosed by a full assessment earlier this year.

I've lived with the same feeling all my life; that I have trouble fitting in, sharing my feelings, making friends, succeeding in work and life, feeling like I see things differently than others. At the worst of times, I thought I had some sort of severe mental illness, other times, I just thought I was a little unusual and quirky.

I still feel this way, (not so much about the severe mental illness, that's a relief) but now I know why, and that there are others out there who feel the same. It is helpful to find resources to better understand myself, some of the younger posters here remind me of myself when I was their age, maybe I can be of some help to someone else walking the path.

While I feel some regret that I learned about this in my 40's, I'm trying to move past that and make the best of what I have left.



Last edited by grbiker on 03 Nov 2014, 9:15 pm, edited 1 time in total.

funeralxempire
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03 Nov 2014, 8:30 pm

I left the Dr's office feeling like I had found one of the missing pieces for my puzzle.
Just one of several though.


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auntblabby
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03 Nov 2014, 8:56 pm

all my life I've known there was something major wrong with me, but I went through periods of being "angrily unaware" of this, in terms of me believing quite fervently that there was nothing wrong with me but everything wrong with the goddamned world. my earliest dx and most recent dx was on the autism spectrum. 2 school shrinks thought I was schizotypal or schizoid [I read their notes on me while they weren't looking], later in adulthood was dx'ed with ADHD inattentive subtype, later on with AS. probably have a handful of other things as well.



LupaLuna
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03 Nov 2014, 9:40 pm

All my life. I felt like I never belong in this world. It wasn't until I was 41 when I meet a psychiatrist on break on a Starbucks that had notice my strange behavior and told me about it. At first I never believed it and though he was another one of those astrologist telling be I was the indigo child. About a month later. I type in the name "asperger's" and I was in for the shock of my life.



B19
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03 Nov 2014, 10:06 pm

https://archive.org/stream/LATEDIAGNOSI ... 7_djvu.txt

The above is a link to a very well written article based on some research done into late diagnosis issues. The findings will probably be very familiar to the "older, misdiagnosed/never diagnosed" segment of the WP membership (of which I am part) and validating in some ways I hope.



alpineglow
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03 Nov 2014, 10:09 pm

^ B19 thank you for that. It is relevant for me at this time.



BuyerBeware
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04 Nov 2014, 8:26 am

Wow B19, that's a lot of information. Just in time for cold weather (too bad I have to babysit today or I'd be reading now).

I was another late diagnosis.

First thought: I always knew I was broken, and now I have confirmation.

Second thought: Please believe that I'm not a monster.

Third thought: I'm still working on that. I'll let you know when I get there, but I'm not sure I'm a good enough witch to have Third Thoughts.

If you're not a Terry Pratchett fan, don't read too much into that last statement.

On the whole, I'm glad that there wasn't anything to diagnose me with as a kid. I feel like I fell through the cracks...

...and found out that there was a whole world down here, and made a pretty good life in it.

I wish I'd had more information younger, but considering the information that was there to get, it probably would have hurt, not helped.

I feel like the REAL "lost generation" is the people now in their mid 20s to early 30s. The ones who got picked up before they had much life experience, during the time when all the information said we were incapable of empathy (and "empathy" meant "caring about people") and should be forced into robotic conformity at almost any cost.


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naturalplastic
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04 Nov 2014, 8:56 am

My mom and sis suspected I was an aspie. Suggested it to the shrink I was seeing around 2010, and she responded that she had "never even heard of aspergers before". She read up on it overnight, and then declared that I had it. But I didnt get the real deal-the thorough test-until like three years ago with I was 56.

Yeah -its a rose with a thorn. Was happy to find the missing piece in my life, but also a bit sad that no one told me about this decades ago.

Funny thing is that autism (classic autism, or whats now called LFA) burst onto the scene when I was a sixth grader in the Sixites. Suddenly there were radio shows about autism- experts and suffering parents of autistic children on the air. A movie about an autistic acting boy on the Yorkshire Moors, and his beloved horse. It occured to me at the time that these autistic children were alot like I was when I was a few years younger- except I was little less severe. Made me wonder if I didnt have a mild watered down version of autism myself. But then I dismissed the thought because "you never hear the experts talk about a mild version of autism".



gamerdad
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04 Nov 2014, 9:08 am

To an extent, yes. It seems like there's definitely a significant difference in the experience for those who grew up with a diagnosis and those who didn't.

I don't think that means there won't continue to be issues with diagnosis going forward. For starters there's still the 4/1 ratio in diagnosis for males/females, so I think there will continue to be a lot of undiagnosed women in the future. Also, with the continually expanding diagnosis rates, I think we might be on the verge of a bit of a backlash in public perception regarding validity of diagnoses (ala ADHD). I've already had people tell me, when discussing my adult diagnosis, that "ASD is really over-diagnosed these days".

So I feel like we're well past that point where the majority of people on the spectrum will be growing up un/mis-diagnosed, but future generations will still have their own struggles to fight.

Personally, for me, it was an incredibly eye opening experience to get my diagnosis. So many things make sense now that didn't before. It's only been a few months for me, and I'm still trying to get my mind around all of the implications, but it was a transformative moment in my life.



androbot01
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04 Nov 2014, 1:47 pm

B19 wrote:
https://archive.org/stream/LATEDIAGNOSISSURVEYV7/LATE%20DIAGNOSIS%20SURVEY%20V7_djvu.txt

The above is a link to a very well written article based on some research done into late diagnosis issues.


Quote:
Every Adult with Asperger's syndrome in this survey suffered mental ill-health due
to their late diagnosis of Asperger's syndrome and lack of appropriate support.
Mental ill-health includes anxiety, depression, insomnia and stress.


Quote:
We know that autism is inherited genetically and that there is no cure for this
condition, and there probably never will be. Therefore, we do not support research
foundations that wish to find a 'cure' for autism. Neurodiversity is healthy, and
having differences among the human population makes the world more interesting.
The ultimate panacea is tolerance and acceptance of differences in our population,
rather than eugenics, cloning or forcing people to behave the same way.


Thanks for the article B19!

BuyerBeware wrote:
On the whole, I'm glad that there wasn't anything to diagnose me with as a kid. I feel like I fell through the cracks...

...and found out that there was a whole world down here, and made a pretty good life in it.

I wish I'd had more information younger, but considering the information that was there to get, it probably would have hurt, not helped.


Good point.



ASPartOfMe
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05 Nov 2014, 1:23 am

Besides a few professionals that some of us have been extremely lucky to find it is mostly us. We are the support and that is huge. But for the most part that is going to be it as most of the money goes to find a cure and whatever is left goes to children. If we are the lost generation what are the people our age, older, who will never get diagnosed or are dead and never did?

Reading the report I can''t believe I got as far as I did. But that is in my past, as I age and society becomes more Autistic unfriendly now what?

Being un diagnosed all those decades why I find "it's overdiagnosed", an excuse to be rude, DSM 5 etc so infuriating.


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05 Nov 2014, 9:23 am

I don't know if I count, but I was diagnosed at the age of twelve. However, I didn't even know I had autism until my junior year in high school. I felt as if it was a relief knowing I had it. There was a lot about me that I didn't really understand, especially growing up as a child. When I discovered I had autism, it was almost as if a new door had opened for me. Like, everything finally clicked. I can't see it any other way either.


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05 Nov 2014, 11:03 pm

androbot01 wrote:

So, to those who slipped through the cracks, how did you feel when you were caught?
As of 4:00pm this afternoon, November 5, 2014, I have been caught. I was clinically tested on October 14 and got the results today. I am elated and relieved. I am so happy about this. It is such a huge moment in my life. I finally have official validation and I know for sure that I can be a Special Olympics athlete for as long as I want. There is no doubt at all now, after nearly half a century of not understanding or knowing why I am the way I am, now I know for sure. I am 100% officially on the Spectrum.


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geraldtonjjeeper
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26 Feb 2015, 11:38 pm

I never thought I was broken, or weird.....everyone else did! That's what makes it so difficult. The struggles I went through to fit in, the abuse from parents and one-time friends, the gentle ostracism of just being and feeling left out! Never being chosen for the team! I could never understand it! I have always enjoyed my own company but could find so few people to share the wonder of the world with. They never stuck around long enough! IQ is not enough! I was diagnosed in early primary school in high 140's, but failed at nearly every test and exam my entire school career, 12 years! I loved music and played in the school recorder group as a young school boy, and wanted to sing in musical drama in high school but was ridiculed so severely by my "mates" that I have almost not sung since, other than on my own in the car! I was a champion swimmer and long distance runner, both individual sports that rely on self discipline and personal stamina. The result of that was to be ridiculed 'til I was in tears.
So, to fit in I worked so hard at being the same as everyone else! Grew my hair long, haha an afro as it was curly and then kept it like that until it was out of fashion! Drank until I fell over, I'm still a two pot screamer! Drove like a maniac on the road, anything they could do I could be wilder, stupider and of course in trouble more often, at which point they would disown me.
I slowly, oh so slowly learned that the only person I could rely on was me. I started to find the world a dark and unfriendly place.
My folks couldn't understand. My brothers and sisters-in-law all thought I was a loser and told me so frequently. There was no acceptance anywhere. My first wife took off with a millionaire! I was working as hard as I could but just not making enough. My second wife couldn't handle the whirlwind of thoughts and projects, and pulled away from me into her shell. I must have frightened her.
Eventually it all blew up in my face! I succumbed to depression and started what would become a 15 year marathon of therapy and internal discovery!
At 50 I was diagnosed as Asperger's!
It was the explanation as to why the world couldn't handle me. Why they could not fit into my life! Haha, it is nice to say it that way around as the other way indicates me at fault! I'm not!
The idea that the only person I wanted to live with was me, was very attractive at the time and I spent most of those therapy years untangling my thoughts from the jumble of the past. Decided I was not such a bad guy after all and could in actual fact be proud of the effort I had put in and most of the things I had achieved. Imagine what I could have done if either I was not Asperger's or I had been diagnosed at a young age and had love and support from those around! It is a waste, all these people pushed to the edge of productive society through something they have no control over. Such a waste!
The only things I now have to watch is my internal voice which is always critical if I don't catch it in time, and my ego! I have always had a problem with being egotistical and it has always been a predictor of a looming disaster! So when I am feeling good I must keep my head unswelled or I will do something that will embarrass myself, offend someone else or cost me money I cannot afford!
So, to finish: Being alone ain't all bad. Being lonely doesn't have to happen, it is manageable. Loneliness after all is just unaccepted aloneness. The sun comes up each morning and without the stress, the world ain't half bad! If I do say so myself!
loveyall