For those with a late in life diagnosis...

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auntblabby
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07 Jun 2017, 7:09 am

^^^^^hi bill :) welcome to our WP club 8)



Strangelittlegirl
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07 Jun 2017, 8:06 am

Does 42 count as late in life? I imagine it does, right? Since mostly children get diagnosed?

I'm not bitter. I have a pretty strong family support system and while no one I told really believed me familywise (except my kids and my mom) they all have always acknowledged that I was and am different from all of them. I was never bullied for it in my family, though. I was just considered "special" or lovingly referred to as "shy" or "quiet". At the time, I didn't like being different from everyone else, but over the years, I've learned to find the positive in that association and, well, use my powers for goods, so to say.

Now, outside of my family was a different story. Friends were hard to make and maintain before I figured out social codes amongst my peers - I'm black, so socializing for me is like studying from two different rule books, one of black folks and one for everyone else. I didn't really acquire any measurable level of social acceptance until after high school and that was more because I'd gotten on board with the internet during its beginnings.

Today, most of my stims and impulses I've learned to control, the social code is still hard, though. I work in a customer service related field and with so many different people and so many different codes, it's hard to figure out how to talk to people sometimes. I've been called rude plenty of times when I was just being factual, etc, etc.

All in all, I do feel like this is a gift. I retain more information than my colleagues. Most of the time, you only have to tell me something once for me to get it. I enjoy organization and have no problem spending hours getting my ducks lined up in a row. I'm a self starter and I don't need others for motivation or even to get something done that needs to be done most of the time. I feel like how I think has gotten me pretty far in life. If I have any regrets it's only that I didn't figure things out sooner. I might've had an easier time for me as a child.


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ASPartOfMe
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07 Jun 2017, 10:58 am

Strangelittlegirl wrote:
Does 42 count as late in life? I imagine it does, right? Since mostly children get diagnosed?

I'm not bitter. I have a pretty strong family support system and while no one I told really believed me familywise (except my kids and my mom) they all have always acknowledged that I was and am different from all of them. I was never bullied for it in my family, though. I was just considered "special" or lovingly referred to as "shy" or "quiet". At the time, I didn't like being different from everyone else, but over the years, I've learned to find the positive in that association and, well, use my powers for goods, so to say.

Now, outside of my family was a different story. Friends were hard to make and maintain before I figured out social codes amongst my peers - I'm black, so socializing for me is like studying from two different rule books, one of black folks and one for everyone else. I didn't really acquire any measurable level of social acceptance until after high school and that was more because I'd gotten on board with the internet during its beginnings.

Today, most of my stims and impulses I've learned to control, the social code is still hard, though. I work in a customer service related field and with so many different people and so many different codes, it's hard to figure out how to talk to people sometimes. I've been called rude plenty of times when I was just being factual, etc, etc.

All in all, I do feel like this is a gift. I retain more information than my colleagues. Most of the time, you only have to tell me something once for me to get it. I enjoy organization and have no problem spending hours getting my ducks lined up in a row. I'm a self starter and I don't need others for motivation or even to get something done that needs to be done most of the time. I feel like how I think has gotten me pretty far in life. If I have any regrets it's only that I didn't figure things out sooner. I might've had an easier time for me as a child.


Age 42 is considered extremely late diagnosis. And bieng black and female you overcame two other obstacles since the stereotyped of an "aspie" is a white boy "little proffessor" type.


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weakbody
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07 Jun 2017, 12:50 pm

I am more embarrassed than bitter or sad. I did a lot of stupid s**t as a kid and in early teenage years. And I am bitter about all the people who treated me as a less of a person. Authorities or peers. I just want to slap them all.



morecircus
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07 Jun 2017, 8:51 pm

If I had gotten my diagnosis younger, my life would have been so much better. Not knowing is brutal and could have easily caused my death! I'm most likely deliberately never going to communicate again with those people who knew. :idea:



IstominFan
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07 Jun 2017, 8:59 pm

I'm 52 and I don't have a formal diagnosis. I came to a sad realization yesterday that, for all of my education, I am "the dumb person in the room" in terms of life experience. I feel that all of the knowledge I acquired over the years won't prevent me from dying alone without someone to love me.



auntblabby
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08 Jun 2017, 1:03 am

mee too. :|



AspieUtah
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09 Jun 2017, 6:59 am

I forgot to mention this before now: During the last three weeks, I was recruited by two of the research groups I joined years ago (Interactive Autism Network (IAN) and University of Cambridge Autism Research Centre (ARC) to complete some adult-diagnostic surveys and tests. It appears that Simon Baron-Cohen et al. are reconsidering their (lack of) adult-specific questions (at my age, I rarely get asked to join childhood tests). The questions seemed like an updated version of their typical questions. They focused exclusively on adults which made me wonder if they are planning a new set of adult-relevant tests for adult diagnoses to use in clinical situations. If so, that is good news, in my opinion. The fact that they are broaching the idea of late diagnoses with better testing is a welcome idea.


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underwater
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09 Jun 2017, 1:37 pm

AspieUtah wrote:
I forgot to mention this before now: During the last three weeks, I was recruited by two of the research groups I joined years ago (Interactive Autism Network (IAN) and University of Cambridge Autism Research Centre (ARC) to complete some adult-diagnostic surveys and tests. It appears that Simon Baron-Cohen et al. are reconsidering their (lack of) adult-specific questions (at my age, I rarely get asked to join childhood tests). The questions seemed like an updated version of their typical questions. They focused exclusively on adults which made me wonder if they are planning a new set of adult-relevant tests for adult diagnoses to use in clinical situations. If so, that is good news, in my opinion. The fact that they are broaching the idea of late diagnoses with better testing is a welcome idea.


That would be extremely useful, great initiative if that is what they are up to.

Sometimes on WP is see people describing something they do, and I go 'nah, I'm not like that'. And then I remember that I used to be - twenty years ago. :lol:


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KanyeWestFan2.0
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10 Jun 2017, 10:53 pm

Were you sad/bitter for the autistic child you once were for falling through the cracks?

I was very bitter because I had my life taken away from me without me even knowing. I was in this ignorant state of mind where I didn't realize my reality and I couldn't escape the thoughts that maybe if I was diagnosis at the right time then would I be aware of my reality the whole time? and have a better chance at a better life?

Were you mad at the important people/mentors in your life who failed to take that child seriously?

Of course especially since kids my age already knew something was wrong me but somehow the adults didn't?

Also:

What is your stance on disclosing this diagnosis to the people in your life?

I did it and no one cared, they still view me as the old me



auntblabby
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10 Jun 2017, 11:22 pm

I myself assumed/presumed that I would "grow out of it" and become a normal adult. but that future came and went with no real change, but I did learn a few useful workarounds, at least. :alien:



Dear_one
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11 Jun 2017, 5:39 am

Sad/bitter? Not particularly. Still glad I avoided a misdiagnosis. I'm not convinced I'd have wanted the help available now. I can't really miss getting more support without a sample first.

Mad at mentors? Not mad, just sad. The rare possibilities were too busy, and why would I expect people to listen to a child when they ignore the much more articulate adult with scientific proof of technical benefits?

When I mistook a mis-wording for a trick question in science the first time I took a High School exam, I got zero for the only correct answer in the whole grade, so I quit paying attention, and flunked out with a general knowledge score above college grad level. Fortunately, this was in the 60's, when young people celebrated eccentricity in their peers.

I am more upset that I spent over a decade in various programs for adult children from dysfunctional families and nobody even had a checklist with AS on it. Finally, 11 years after Asperger's hit the DSM, I ran across it while trying to explain my AS mother to my NT sister, as she was dying.

Since I could finally make sense of my life, I had no hesitation about telling people, especially any that I'd shared my struggles with. It didn't help. People can't imagine our minds, but they can confidently make the same mistake about two very different people if they hear what they see as a single label.



HoxtonPaul
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13 Jun 2017, 11:47 am

https://tickets.edfringe.com/whats-on/s ... ople-speak

I am taking a show about late diagnosis and living in the neurodiverse closet to the Edinburgh Fringe festival this year.

I hope to go on to make the script a free to use PDF. So anyone anywhere can adapt it and work under its umbrella title of Stealth Aspies. It was written from an online survey you can still contribute to. Have a look at my website link below for the Stealth Aspies page.

I'm also doing my Guerilla Aspies show again for the third year.

http://WWW.paulwady.com.

Both my wife and I got diagnosed at 40 and 41 respectively. That's how we met. We also have a cat...



B19
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13 Jun 2017, 3:48 pm

That's wonderful. Wish I lived a lot closer.



ASPartOfMe
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13 Jun 2017, 4:41 pm

Excellent work.


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AubieGirl
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05 Apr 2019, 9:40 am

I have mixed feelings about it. If I had been evaluated earlier in life, I would have been labeled as depressed, possibly erroneously diagnosed with borderline personality disorder and medicated. I made my way through the difficulties of social interaction the best way I could. I felt like I was on my own, even as a young child. I was bullied at times. Making friends was a mystery. I felt younger than my classmates & was grateful to anyone who let me hang around with them. I made it through college and grad school but relationships always dissolved, for reasons I couldn't understand. I mimicked and masked and assumed this is what everyone did. I've only recently learned that this is an Asperger's trait. I have not revealed my diagnosis to anyone and don't know if I will. I'm really thankful to find an online group to whom I can relate. Finding out I'm not the only one is such a relief.