Anybody else struggle to accept their diagnosis?

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Mona Pereth
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07 Nov 2019, 9:05 pm

Joe90 wrote:
My parents weren't ashamed of me for being autistic, because my mum told everyone. But I could tell that she was unhappy about me having a mental disability, so I've always felt unhappy about having a mental disability too.

Do you feel that your parents violated your privacy by telling "everyone" about it, perhaps resulting in a lot of people treating you differently (and not in a good way) because if it?

As you wrote:

Joe90 wrote:
I even thought that the teachers saw me as my label and not as me.

As a child, did you feel that a lot of other people saw you that way too?

If so, perhaps that might be one reason why you don't want to tell anyone about it?


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Joe90
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08 Nov 2019, 5:09 am

Mona Pereth wrote:
Joe90 wrote:
My parents weren't ashamed of me for being autistic, because my mum told everyone. But I could tell that she was unhappy about me having a mental disability, so I've always felt unhappy about having a mental disability too.

Do you feel that your parents violated your privacy by telling "everyone" about it, perhaps resulting in a lot of people treating you differently (and not in a good way) because if it?

As you wrote:

Joe90 wrote:
I even thought that the teachers saw me as my label and not as me.

As a child, did you feel that a lot of other people saw you that way too?

If so, perhaps that might be one reason why you don't want to tell anyone about it?


It might be, but I don't want to think it was her fault, because at the time she didn't really know what was best, and I was only a child so I had very little control. My mum thought telling everyone (relatives, friends, etc) would be useful. But I remember when I was a teenager my mum met this good-looking guy (she didn't often meet men as she was shy), and she brought him home. I was at school at the time, and he had gone before I got home, but when I got home I saw the Asperger's syndrome book on the living-room table, and I was mad. It was as though as soon as she mentioned her daughter (me) to him the conversation changed to Asperger's syndrome and she had to get the book involved.
Luckily she didn't see him again after that because she found out he was married. But I was so annoyed that she had to always tell everyone she met about my stupid mental problem.

Now I'm an adult I'm glad I have control over things. People no longer see me as a label, instead they see me as me - a quirky but funny and chatty young woman. I talk about my anxieties and depression but that doesn't get people suspecting anything.


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08 Nov 2019, 12:43 pm

If you don't "accept" your diagnosis what then?

You are a member of the human race, and you live on planet earth. So you know full well that being free of labels is not an option. The only options are between which labels you get stuck with. That's how it is for humans on Earth.

If you have the life difficulties of an autistic, but don't have the label "autistic" then that automatically means that you are a NT with a flawed character. you're a neurotic wierdo and a ret*d then.

So...
since the dichotomy is not between autistic vs no label, but the dichotomy of autistic vs sick ret*d, then lets all get down to the real nub of the issue.

The real deal is...that you prefer being called a "sick ret*d" to being called "autistic". You may not be aware that that is what you are choosing, but realistically that IS exactly the choice you're making.

So ..why do you prefer "sick ret*d" (and slacker, and neurotic, etc) to "autistic"?



Mona Pereth
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08 Nov 2019, 5:03 pm

carlos55 wrote:
One of the saddest things about parts of the Neurodiversity movement is the inability of many to separate their diagnosis from their themselves.

There's a reason why many of us feel this way. When I began reading up on autism in earnest in early 2018, I found that just about every aspect of my personality -- good, bad, or neutral -- is considered to be either an "autistic trait" or, at the very least, a trait much more common among autistic people than among NT's. Even my talents are in the latter category. Thus, if all my "autistic" characteristics were somehow to be excised, I would literally be a completely different person.

carlos55 wrote:
So they feel an attack on ASD, like wanting a cure or to be cured for example is an attack on them, which is just plain idiotic in my opinion.

I don't have an issue with the idea of treatments for specific disabling aspects of autism. I also don't have an issue with attempts to cure degenerative conditions like Rett's Syndrome and Childhood Disintegrative Disorder. I also would advocate that a much higher percentage of treatment-oriented research be focused on the more severely-disabling kinds of autism (currently under-represented in autism research funding). But, for reasons I'll explain in more detail in future posts, I have major objections to the goal of completely eradicating "autism" in general.


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08 Nov 2019, 11:17 pm

Mountain Goat wrote:
The difficulty is "How do we know that when we struggle with something, that the nature of the struggle is autism related, character related or daily life related?"


Runs around in circles says the sky is falling. Stops , looks up waits .. and repeat until . Too tired .... :?:


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rdococ
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11 Nov 2019, 11:59 am

I struggle with self-hatred at times. I want to be the best person I possibly can be for my friends, but how can I do that if I have to take so much time to process what they want from me, and often times I just can't figure out what they're trying to say? I feel like a failure.

However, I do know that my autism is not my fault. It's a burden that has been placed, unfairly, on the shoulders of me and the people I am close with. I never wanted such a thing.

I'd give up anything to be neurotypical, but I know that there are no real cures - at least, not yet. The best I can hope for is treatment that makes it easier to deal with.



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11 Nov 2019, 1:08 pm

My mum had a nervous breakdown because of the stress that I caused. This was because I acted out of character when I started school and nobody expected it. So my parents were accused of child abuse and had to go through a lot to prove that they DIDN'T abuse me in any way. But me and my brother and sister nearly got taken away, which terrified my mum.
So I do wish I could go back and start school like a normal 4-year-old and then all this stress wouldn't have happened.


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kraftiekortie
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11 Nov 2019, 1:15 pm

I don’t blame you.

But what happened happened. Don’t blame yourself.



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11 Nov 2019, 2:18 pm

kraftiekortie wrote:
I don’t blame you.

But what happened happened. Don’t blame yourself.


That's what my mum always says - she says that I couldn't help it and she always wanted what was best for me.

But I think I have a little bit of PTSD too, because when I was 5 the principal hated my mum for some reason, while my teacher saw me as a scapegoat and once yelled at me really loudly in front of the whole class because of an accident that wasn't my fault. My young mind took this all in and it all often comes back to haunt me.
Plus there's the teenage years where I suffered ridicule, social rejection and emotional bullying from my peers and was told "nobody will ever like me because I have Asperger's" and other nasty things like that. It all affected my self-esteem and it just made me feel insecure about who I am.


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Jakki
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11 Nov 2019, 2:37 pm

Joe90 wrote:
kraftiekortie wrote:
I don’t blame you.

But what happened happened. Don’t blame yourself.


That's what my mum always says - she says that I couldn't help it and she always wanted what was best for me.

But I think I have a little bit of PTSD too, because when I was 5 the principal hated my mum for some reason, while my teacher saw me as a scapegoat and once yelled at me really loudly in front of the whole class because of an accident that wasn't my fault. My young mind took this all in and it all often comes back to haunt me.
Plus there's the teenage years where I suffered ridicule, social rejection and emotional bullying from my peers and was told "nobody will ever like me because I have Asperger's" and other nasty things like that. It all affected my self-esteem and it just made me feel insecure about who I am.


Just imagine a entire website filled with many many similiar people , like that.
:)


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Joe90
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11 Nov 2019, 6:37 pm

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You would have the same life challenges that you always have had. They wouldn't go away, anymore than do the symptoms of a cold go away just because you decide to not label yourself as "having a cold".


No but I'm in a similar situation to your analogy actually. I have been suffering greatly from my sinuses today, and I still don't know if it's a sinus infection (non-viral) or a cold (viral). If I was told by a doctor that it is a sinus infection and not a cold, I'll be happier - even though I'm still suffering the same. This is because there are more cures for sinus infections, like antibiotics and such, where as with a cold you are stuck with the thing until it's runs its course, and it makes you contagious to other people.
So the same works for Asperger's. If I found out my problems are caused by something else and not Asperger's, then whatever it is might have more chance of being cured, or if not there might be better treatment or therapy or support or whatever, or even more awareness or understanding from the general population.

But I'm NOT saying I do have something different from Asperger's that's causing the same symptoms. Well I do have ADHD and anxiety alongside Asperger's. But you know what I mean.


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11 Nov 2019, 6:56 pm

My diagnosis came very late in my adult life and only after being in therapy for PTSD. Therapy sessions were very helpful and there are a number of books about late-in-life Asperger's diagnosis:

Very Late Diagnosis of Asperger's Syndrome
"How seeking a diagnosis in adulthood can change your life"
Phillip Wylie

Pretending to be Normal
"Living withe Asperger's syndrome"
Liane Holliday Willey

It's been five years since the diagnosis and the adjustment is an ongoing process.
Best of luck to you.


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