Anyone else feel angry for not getting an early diagnosis?

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GadgetGuru
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14 Oct 2021, 12:34 pm

I'm trying hard to avoid the "If only I had known earlier" game.

It doesn't seem likely to lead to anything positive. So instead, I am focusing on rethinking my life experiences, and punishing myself less for "failing" in some of those cases. I am also trying to come up with ways to avoid similar problems in the future, given what I now (think I) know.


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AnaBukowski
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14 Oct 2021, 12:35 pm

No. Quite the contrary, I dread the change in attitude from other people that it would have brought on. My emotionally immature parents would not have handled it well. Others seem to think of me as smart and capable if just a bit shy and nerdy. I've always powered through anything that came my way - not really recognizing a lot of my own emotions, really, and sometimes withdrawing when it's too much - and I've achieved the things I wanted. I'm not sure I would have been able to do that if I was more aware of what was happening within me, I would have cut myself more slack. I'm not sure if I would have been happier though.



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14 Oct 2021, 7:14 pm

AnaBukowski wrote:
No. Quite the contrary, I dread the change in attitude from other people that it would have brought on. My emotionally immature parents would not have handled it well. Others seem to think of me as smart and capable if just a bit shy and nerdy. I've always powered through anything that came my way - not really recognizing a lot of my own emotions, really, and sometimes withdrawing when it's too much - and I've achieved the things I wanted. I'm not sure I would have been able to do that if I was more aware of what was happening within me, I would have cut myself more slack. I'm not sure if I would have been happier though.


I haven't told my parents. They're 86 and 79. At this stage of their lives, why put them through the Monday Morning Quarterbacking? I'm very much at peace with my diagnosis, so I'm not going to force them to ask "what if?"



Arathors
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14 Oct 2021, 11:18 pm

Angry? Not really. It would've been nice to know what was going on with me. I would've hated myself less. But I wouldn't have been able to adjust too much more than I already did, given the near-total lack of supports in my area. My family would never have accepted it. I might have been able to find friends a bit faster, but not by much, and not in person. I managed to claw my way from suicidality and near-homelessness into a good marriage, a stable job that I like, and good relationships with the side of my family that isn't crazy, all before I knew I was autistic. I don't think having a diagnosis would have helped me do that much faster.

Don't get me wrong, I very much wish I had known. The lessened self-hatred alone would've been amazing, and I might have been able to find online friends more easily due to knowing where to look. But it wouldn't have made much material difference in the course of my life.


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The_Illusive_Man
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30 Oct 2021, 5:54 am

Late to this, but I can tell you I will always carry an anger for not getting diagnosed sooner.
I am not saying it is anyones fault, nor am I saying that an earlier diagnosis would have made my life all sunshine and rainbows, but I was undeniably diagnosed at the worst possible moment.

I had gone through my entire school life being bullied for being "weird". Teachers and parents thought nothing of it, they always had the view that I was just a "quiet boy" and with time I would come out of my "shell". So the entirety of the schooling system was horrendous for me both in terms of actually going to school and my condition also screwed me when it came to exams. I was a hard worker, I went to every after school session, bought every revision book, I put my soul into doing well in school, but when exam time came I was so stressed and so nervous that the only thing I could think about in the hall was not to vomit in front of everybody.

After school ended I was trying to make something of my life, nothing fancy, I always had humble ambitions and things seemed to be going well, I had a career lined up, I was doing well in the interviews and in the physical test components..........then I got diagnosed. A chance encounter with an occupational therapist led to me being referred to an "autism team" which I had never heard of before and have never been in another city since that has such a team. But they talked to me, then spent a few days with my parents talking about my childhood and my developmental years and then told me I had aspergers.
This was crushing for a few reasons.
1: If I had known that earlier then I still would have been bullied in school, but I would have been able to seek some degree of help and I would have been allowed to sit my exams in the smaller rooms, instead of in the PE hall with hundreds of people around me.
2: Finding out that all those years the people who had branded me as "weird" were right and on top of that that I had an incurable condition that would have people seeing me as "weird" for the rest of my existence, I cannot tell you how much that hurt.
3: It f****d up any chance I had at turning my existence into a life. Despite my application going well, despite me doing well in the inteviews and proving myself more than ready in the physical testing the second my records showed me as having aspergers they were done with me. I was branded PMU ( permanently medically unfit) a branding that means you are not even allowed to apply for certain jobs, you are discarded as worthless without even being given a chance to prove yourself.

Obviously all of our circumstances are our own and if other people have a better view of theirs then that is honestly good for them, but for me, I can tell you I am very much angry, I hate autism and will hate it with every fiber of my being until my last breath



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30 Oct 2021, 6:02 am

I don't care. I am who i am. When i was diagnosed was not going to alter the outcome very much.


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30 Oct 2021, 8:39 am

The_Illusive_Man wrote:
Obviously all of our circumstances are our own and if other people have a better view of theirs then that is honestly good for them, but for me, I can tell you I am very much angry, I hate autism and will hate it with every fiber of my being until my last breath

On your behalf I am very angry at those limiting policies and circumstances. I had a neighbor who was a fantastic airplane mechanic. He applied for a job and in the last step they found his DUI (driving under influence) and banned him from that and future applications. He found out that they only look back 3 years and his was 2 yrs 11 months and 2 weeks ago. If he had waited two weeks to apply, he most likely would have gotten the job. He was NT so probably has more opportunity available to him, although he did move out of town. I am so sorry you lost a key opportunity in your life and that the consequences were severe. :(



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25 Mar 2022, 3:16 am

GadgetGuru wrote:
I'm trying hard to avoid the "If only I had known earlier" game.

It doesn't seem likely to lead to anything positive. So instead, I am focusing on rethinking my life experiences, and punishing myself less for "failing" in some of those cases. I am also trying to come up with ways to avoid similar problems in the future, given what I now (think I) know.


Amen brother.

As I've been reading posts, I've been wondering if an early diagnosis doesn't make a person more inclined to view themselves through the eyes of the NT's since they believe early on that they are the "problem". But if the autism spectrum is just one ill defined part of the human spectrum, then wouldn't it be more accurate to tag it as "a less common configuration" or something?

I now feel lucky I didn't find out till I was 72. I recently realized my family thought I was "retarded" untill I was 8, when they learned I was good in science. I was in Special Ed before there was a Special Ed all through school. They even let me take physics class and be recognized as having the second best grade in the class, and yet I was still in special Ed??? And through all of that I was too socially ignorant to recognize I had a problem, so I couldn't think of my self as being the problem.

I guess I've been very lucky. I really hate to see people think of themselves as a problem. But then I think the NT way of thinking is a problem. Just look at the world it has built.


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31 Mar 2022, 10:18 am

Awedfellow wrote:
"a less common configuration"

:D :heart:



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31 Mar 2022, 10:35 am

I'm far more sad than angry. I'm struggling to emotionally cope with what could and should've been,with an earlier ASD dx and better mental health care, and how things actually are. So much damage done . So much unfulfilled potential.



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15 Jun 2022, 2:34 pm

My case may be idiosyncratic.

I am glad that my parents did not seek diagnosis but I understand why some people might wish they had. It is only in my late 40s that I feel this way, that said. Part of it is that over the years I became sympathetic to their political views that influenced their choice to keep me out of the system, and share many of them myself. I am also sympathetic to the life experiences they had (my mom from a family with many people "in the system" because of developmental disabilities and mental illness, and my dad having a father who was in a Native residential school where they intended to "kill the Indian to save the man") that made them believe what they did, and do. They believe they were acting in my best interest given what they had available to them, and at this point in my life, I've come to agree with them.

I would not feel this if my parents were not polymaths, and very skilled in offering guidance themselves based upon their own life experience as NDs (my mom, definitely autistic, and my dad... at least ADHD and some autistic traits) living in the world. And also I would not feel this way if in fact I had not already had relatively low support needs at the time. The interventions offered within the school system would not have been appropriate to my particular level of support needs and my outcome would have been as poor as was that of some other members of my family, and my mom wanted to avoid that.

In my 20s and early 30s, I was mad at my parents for not having me diagnosed. Now I mainly have trouble convincing them that autism is even real to begin with, but I am over whatever happened in my childhood.

I am not sure that the choice that my parents made, in light of the circumstances of my childhood, would be the proper choice for some other family.

When I did get diagnosed, it happened relatively easily because of the accumulated school records that I had from the years that school officials were trying to pressure my parents into having me diagnosed. (I ended up being homeschooled for half of my childhood. I dropped out of 10th grade.) It's like everyone knew I was autistic except for my parents. While I am female, I do not have a "female autism narrative," I was the really picky and stubborn child who sits in the corner reading astronomy books, and who had delays in early childhood, and I didn't really learn to do eye contact until I was 16 (well... my dad taught me the "faking eye contact" trick... and he told me,"here's the trick I learned.")


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chealy5
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08 Jul 2022, 6:47 am

I’m 54 and was just diagnosed last week. Given my diagnosis (ASD Level 1), there was no way I would have been diagnosed when I was younger. And by the 90s I was married (now divorced) and employed and working on a Masters. No chance there, either. Because I didn’t recognize the value of mental health care until a little over a year ago, there just wasn’t anyone with professional knowledge who would have recognized the signs. Let alone me. If I had had a diagnosis 13 years ago when I got divorced, or even before my children reached legal age, my ex would have used that against me in court proceedings.

So, a long wind up to say, I think providence arranged the timing at about the best time in my life as it could be. Oh, yes, if I had known earlier I could have better understood my challenges, but I think it would have made far more challenges as well.



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08 Jul 2022, 12:02 pm

chealy5 wrote:
I’m 54 and was just diagnosed last week. Given my diagnosis (ASD Level 1), there was no way I would have been diagnosed when I was younger. And by the 90s I was married (now divorced) and employed and working on a Masters. No chance there, either. Because I didn’t recognize the value of mental health care until a little over a year ago, there just wasn’t anyone with professional knowledge who would have recognized the signs. Let alone me. If I had had a diagnosis 13 years ago when I got divorced, or even before my children reached legal age, my ex would have used that against me in court proceedings.

So, a long wind up to say, I think providence arranged the timing at about the best time in my life as it could be. Oh, yes, if I had known earlier I could have better understood my challenges, but I think it would have made far more challenges as well.

Welcome to Wrong Planet and congratulations.


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09 Jul 2022, 5:47 pm

rache123 wrote:
I feel like if I was diagnosed before the age of 12 or 13, that I probably would have been able to have had healthier coping mechanisms at a younger age.
I was diagnosed at age 8 in 1996. I had a diagnosis but it sure as heck didn't come with any advice on how to create healthy coping mechanisms.


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17 Jul 2022, 11:38 am

No. If i was diagnosed when i was a child likely my parents' marriage wouldn't stand and our relatives might have even cut contact with my mom



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17 Jul 2022, 10:37 pm

AprilR wrote:
No. If i was diagnosed when i was a child likely my parents' marriage wouldn't stand and our relatives might have even cut contact with my mom

Ouch!
And none of it would have been your fault.


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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