Anyone else feel angry for not getting an early diagnosis?

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Lady Strange
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28 May 2021, 6:26 pm

Wolf1066 wrote:

Why are you fidgeting? Do you need to go to the toilet? No? Well stop that!
That's rude, you can't say/do that.
You're weird/strange/crazy.
If you keep acting like that, the men in white coats will come and take you away.
That's not appropriate.
Be quiet. Keep your voice down.
Why can't you apply the intelligence we see in that subject to this subject?
Why can't you just be normal?
What do you mean you don't know you're doing it? Of course you do. You're doing it deliberately. You're ****ing doing it again!



Just to snip this to quote, holy cow brings back bad memories! I am so sorry you had to deal with all that abuse. It is abuse. I'll never forget my mom pointing at another younger child just calmly sitting there next to us (this happened when I was young too) while I was having a meltdown being exposed to noise that was way too much for me and was making me lose it, and asking me "why can't you be like that kid?" while trying to prevent me from covering my ears. Ugh. I wasn't trying to be bad, literally could not help it!



Wolf1066
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29 May 2021, 4:24 am

Lady Strange wrote:
<snip> I'll never forget my mom pointing at another younger child just calmly sitting there next to us (this happened when I was young too) while I was having a meltdown being exposed to noise that was way too much for me and was making me lose it, and asking me "why can't you be like that kid?" while trying to prevent me from covering my ears. Ugh. I wasn't trying to be bad, literally could not help it!

Ach! Gutted to hear that, mate. That's awful - and I can relate.

I certainly hope the situation is better now.


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Nades
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29 May 2021, 5:08 am

The issue of diagnosis is a touch one. Even after Aspergers became known (changed yet again though) it took a long time for the medical community to widely recognise it. Back many decades ago there was simply nothing to diagnose mildly autistic people with as no diagnosis even existed but today getting a diagnosis might be hard because it's not really high up on the list of priorities of most physiologists/physiatrists given the other disorders that take up a lot of their energy.



Lady Strange
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30 May 2021, 10:48 am

Wolf1066 wrote:
Ach! Gutted to hear that, mate. That's awful - and I can relate.

I certainly hope the situation is better now.

Yes it is better now. I hope you are also in a much better place than back then. It's so sad to be treated like that for things you cannot control.



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30 May 2021, 11:19 am

So, yeah, the stories in this thread sound alot like my childhood, and I often wonder if people should actually be allowed to just procreate without any education on what they might encounter in a child - a totally new nervous system, the state of which they can't easily read. It's like trying to debug software without a debug log. A black box.

I have the feeling at least in my parent's generation, info was scarce and hard to come by, and they all just operated under the assumption that they weren't *entirely* screwed up by their parents, so the safest bet was to raise their kids in the same way, regardless of who the child is.
And, you know, "a little beating never hurt anyone"....


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30 May 2021, 11:40 am

Maybe. Maybe not.
I wasn't diagnosed late or too late. So I don't share the same stories as those who were diagnosed in adulthood.

Yet I do hold a form of grudge... Deep down because I spent most of my youth being frustrated.
I tried to forgive, I tried purging any unconscious memories done out of ignorance of my back then ignorant parents.

Maybe I do wished I was diagnosed a bit earlier or even had a thought that I might be an ND, than just early diagnosis.


My parents are just a bunch of utterly clueless people.
Or maybe just too immature, with no direction of attitude to go to because they don't know what my behaviors and preferences mean.

They don't know why I'm upset. Why I've been pointing at things. Why I've been different. Why I was being rude despite 'exposures' or lessons.

They're not obsessively normal or abusive, but too worried... And too frustratingly clueless and unreliable.
They don't know they're being abusive. They don't know they're hurting. It's all they know.

They're not one of those people with real issues dealing with their own mental health or having personality disorders.
They're not one of those people who are very vulnerable.
They're not alexithymics and/or stoics or those who discourages emotions either. They're not one of those 'complicated' people who needed 'help' or a label.

At worst, my parents are just one of those couples who are both loud and both fight back, with no space to get it away from their children when they do fight.
... And they don't do this to their children. Except fight back, assuming you're a normal person who gets the point why. I'm not.



The parents I've known before and after any thought of considering I might be different from others (ND) were very different people.

They're still unreliable though...
But their attitudes are much, much better and understood why even if they don't get it.




Anything else outside my family, may or may not be relevant.
I'm grateful to meet my SPED teacher.

But everything else? Services? Accomodations? Nothing.
Or at least, nothing directly towards me with no guarantees until people figured I'm asocial.


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02 Jun 2021, 4:00 pm

On the inside looking out: Life as an autistic adult by K.Yvonne for Chicago Now

Quote:
Imagine knowing your whole life, from early grade school, that you’re different from everyone else but not knowing why. Everyday interactions and activities that come so easily to other people are agony. Feeling like you are on the outside looking in. Or more accurately, on the inside looking out.

Social situations, with all but a few close family members or friends, are excruciating. You are guaranteed to blurt out the wrong thing at the wrong time, so it’s easier to stay silent but then you’re regarded as antisocial, weird. You struggle to look most people in the eye or meet their gaze for more than a few seconds.

You are dismissed as “shy,” but you know deep down that shy doesn’t quite explain you.

Having to get up in front of a classroom and have multiple pairs of unfriendly eyes trained on you makes the prospect of death appealing by comparison. Team sports are torture.

And this is before you are even in high school.

Only it doesn’t go away after high school or even college. That time when you’re supposed to enter young adulthood with a developing sense of self and your life is supposed to start “falling into place,” whatever that means. Except things never fall into place like they seem to for other people. Maybe on the surface they appear to: First job, first apartment, all those things. But you never fit in anywhere. Even with your family. You feel like a child in an adult’s body, going through the motions.

You are in a never-ending awkward phase. What’s worse, your mental suffering begins to take a toll on your body and manifest itself in alarming physical symptoms.

Imagine growing up and coming of age with a condition virtually unknown to your time and place.

Even if you had parents who approved of and could afford adolescent psychiatry, which many of us did not, a shrink still could not have helped you. They might, in the unlikely event your parents consented, put you on an antidepressant regimen that might alleviate some of your symptoms but not treat the root cause of what ails you. Because there is no cure, and still is no cure, for that.

The counselors and therapists you see when you’re finally old enough to make these decisions for yourself are also limited by the prevailing wisdom in what they can do for you, so it’s still antidepressants and perhaps ADD medication. But no pill can fix you.

This is the life of someone diagnosed in middle age with Asperger’s syndrome. This is what it’s like to find out, well into mid-life, that you are autistic and have been your whole life. It’s learning that, contrary to what you believed, people with autism can excel in school and earn advanced degrees and pass the bar exam, because you did. Or become physicians, engineers, found tech companies and even become billionaires.

This happened to me in 2020, the year my entire life finally had an explanation. I learned there are others like me, who have suffered like me. That my brain is simply wired differently, through no fault of my own. I was never lazy, stupid, careless, or otherwise flawed in character. How I could have used that information thirty years ago.


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Lady Strange
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07 Jun 2021, 8:17 pm

ASPartOfMe, wow very good quote, sums up my entire existence.



superluminal23
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09 Jun 2021, 1:42 am

I wouldn't say I'm "angry" but I am a little disappointed. I see how neurodiverse kids are treated these days in school and I sort of which that those programs had been available when I was a kid. When I was in school in the 80s, there was no such thing as mental health counseling for children. It's so obvious to me now what my issues were, and if I was in school now I'm sure I'd be working with someone to manage my symptoms. But back in my day, kids like us were alone and none of the teachers had any training on how to even spot the possibility of autism in a student, never mind help with services.

Like most neurodiverse kids of my era, I grew up alone and confused, knowing something was wrong but not having any idea why or what to do about it. My life got so much better after I was diagnosed and was able to understand myself better and to get advice on coping strategies.



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09 Jun 2021, 12:55 pm

wish there had been that kind of oversight of students in my day and age. Quite a shame for myself and others of my generation .


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RadioDog
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11 Jun 2021, 10:04 pm

Part of me wishes I had been diagnosed a lot younger. Not spending decades being isolated and in trouble for missing social things and so on, and thinking and being told the only reason why was because I was a "weirdo". It would have been nice, I think, to understand why I was different, and that it wasn't just that I was a complete "loser".

On the other hand, I've noticed that many people only progress in any part of their lives as far as "experts' tell them is possible. And I can tell that I managed to succeed and get better in ways that I would have been assured were impossible, if I'd been diagnosed earlier. For example, I noticed in high school that I was the only kid who couldn't make eye contact with others, and it started driving me crazy that I couldn't. It took me (literally) many years to be able to finally do it at least most of the time, and after decades I can fake it most of the time when needed (like on the job).

But I meet younger early-diagnosed people that are being told they can never, so they aren't even trying (which is not to say non-ASD levels of eye contact are something to strive for - it was just one thing that got me bullied alot when I was in school and later on the job, so it felt important for my own living to learn to fake it enough to stop that. Same to me as when I was younger I also had a huge stammer that got me bullied on the job/etc, and after some speech therapy and years of practice, I got rid of most of that, as well. All the same.

So I can see both early and late diagnosis as having positives and negatives.


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14 Jun 2021, 8:54 am

It’s a horrible thing, reflecting on a life lost to ignorance. Diagnosed at 52, there was nothing left to gain except my own understanding. Now, a decade and a half later, I don’t often speak of autism.



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28 Jul 2021, 8:54 am

Some days when I’m feeling down I feel I may have benefited from a childhood diagnosis, but then It may have just held me back. Not knowing I was an Aspie had the benefit of allowing me to unleash all the potential of this wonderful condition.

It truly was bliss being able to go to countless raves and dance all night long whilst not being distracted by the urge to “pick up” like my mates were at that time.

It truly is bliss knowing we can achieve anything we want, whilst not being self conscious along the way.

Neuro typical people have always been drawn to us like bees to a hive and always will be, that is what i love about being an Aspie and would not change this for anything in the world.



EdCase
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05 Aug 2021, 4:03 am

I'm personally still processing.

I joined WP in 2008 because I was pretty convinced I was autistic but I only got diagnosed a couple of months ago (with ADHD as a bonus).

My life may have been different had I been diagnosed earlier. Unlike the movies, you never get to see the alternate timeline to know which path was better or worse. So I'll just have to live with it. Having said that I haven't been able to start any kind of treatments yet. Even going private the system is under pressure because of COVID so I've had to wait. If therapy/medication improves my situation a lot then I'll be mad. At the moment I'm not because i don't know any different.



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10 Aug 2021, 1:12 pm

No i do not bc i know i wouldn't even be treated as a human being if i were diagnosed.
I used to dream of a world with a support system but apparently that world doesn't exist where i Live so it is all the same to me.



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11 Aug 2021, 9:36 am

I am grateful to be alive during a time when I had the opportunity to be diagnosed as super late as it was. Many before me never had that opportunity. They lived their whole lives never knowing who they are, never knowing why they struggled with things that seemed natural to everybody else.


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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