Was it better to be unaware of your own autism?

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kuze
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17 Jul 2022, 10:16 pm

Last year I was diagnosed with ASD. I’m in my 40’s now and this revelation has since somewhat helped to understand who I was and who I am today. I am still unpacking the past; waking up in the middle of the night with my head full of scary thoughts, moments when I realise that certain flashpoints of behaviours lead to embarrassment at best and what I now know were meltdowns at worse.

I think what I have realised is that the longer you go undiagnosed or unawares of autism, the more experience you have at masking your behaviours. When I see younger people with autism, they are usually autism aware and behave according to that individuals’ personality. Being self-aware of autism has both challenges and some benefits. On one hand we may be ostracised by NT’s and on the other, receive support with education for example. However, overall I think despite any help autistic people receive for their condition, ASD remains a big challenge in our lives.

I think my question is this; Were you better off, before you realised you were autistic ,or worse off after you were diagnosed, if so, why?

kuze


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Edna3362
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17 Jul 2022, 10:29 pm

In my own case, yes and no.
It's all about timing for me.

Too soon would hold me back from trying (too happy to bother and make excuses).
Too early would make me miserable (too angry to bother and make excuses).
Too late would make me regretful (too depressed and too anxious to bother).
Too much later, I may not even survive and may not know why (too regretful and ignorant to solve, preserve or forgive).

Thankfully, mine was the most ideal of time... Even if it's very contradictory, very polarizing and at my worst of states.


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Last edited by Edna3362 on 17 Jul 2022, 10:30 pm, edited 1 time in total.

kitesandtrainsandcats
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17 Jul 2022, 10:30 pm

Better off after autism diagnosis - because before that I was given an incorrect diagnosis and incorrect treatment and incorrect coping skills and that made things worse.


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HeroOfHyrule
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17 Jul 2022, 10:40 pm

Being aware of my autism probably resulted in a much better outcome for me. I became a lot more self aware, and have been able to focus more on my strengths and use them to help me function better.

If I never had become aware of my autism my family would have probably treated me even worse as a child, and I would have had much less understanding of what's "wrong" with me and why people treat me the way they do. I honestly probably would have committed suicide years ago due to the harassment and stress, so it's good that I was aware of my autism and could learn to cope with those things.



AprilR
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18 Jul 2022, 12:26 am

Its definitely better to be aware of my autism.
I always blamed myself for not being good enough and ignored by people. I have realistic expectations now.



orbweaver
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18 Jul 2022, 12:49 am

I didn't actually start succeeding at anything or having lasting relationships until I became aware of my autism. I had no idea why specific things were so hard, and it also helped me identify what came more easily.


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skibum
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18 Jul 2022, 1:35 am

I believe that I am much better off knowing. I wasn't diagnosed until I was almost 48 so my life was very confusing before then. My challenges are the same and I even have new challenges now that I did not have before but knowing and understanding is much better. I can understand the reasons I have difficulties and I can advocate for myself. That makes a huge difference. I can also educate others about Autism and that is a very good thing.


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KitLily
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18 Jul 2022, 1:45 am

My autism diagnosis has made zero difference to my life. It explains why I've always been 'a weirdo' but I didn't get this big lightning strike of suddenly everything making sense.

I was only diagnosed on Zoom during the pandemic however, so the psychologists didn't even meet me in person. So I'm still not sure how they can know I'm autistic. :roll:

My daughter was diagnosed at the same time, coincidentally. Her autism is far, far more evident than mine.

But generally I'm still ignored, isolated, getting no help. Same old same old.


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ASPartOfMe
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18 Jul 2022, 3:12 am

Edna3362 wrote:
In my own case, yes and no.
It's all about timing for me.

Too soon would hold me back from trying (too happy to bother and make excuses).
Too early would make me miserable (too angry to bother and make excuses).
Too late would make me regretful (too depressed and too anxious to bother).
Too much later, I may not even survive and may not know why (too regretful and ignorant to solve, preserve or forgive).

Thankfully, mine was the most ideal of time... Even if it's very contradictory, very polarizing and at my worst of states.

For me, it is also age dependent.
I got diagnosed at age 55 in 2013

If I got the diagnosis during the 60s and 70s I might have been institutionalized and my mom blamed. I probably would not be alive and if I did survive would be in no shape to post in a place like this.

If I got the diagnosis as a young person with today's knowledge and treatments that would have been horrible also. I just was not mature enough to handle a diagnosis that said you can't do this, and you can't do that.

And I would not be able to handle 25 to 40 hours a week of behavioral training. There is a trend towered describing autistics as having superpowers. If I was told that at a young age I would be an entitled spoiled brat.

That is why I hate today's push for diagnosing as young as possible.



I think by my 30s I would have been mature enough to handle it and use it to avoid trouble and to even gain things. If I knew by then my career would not have ground to a halt, and not had autistic burnout. I would gotten to do things and passed milestones that most people my age did 40, 50 plus years ago, that I never have. The last 10 or 15 years of being undiagnosed are on me, there was enough knowledge and indications by then that I should have taken seriously.

Other than the previous sentence there is no reason to be mad or bitter. There was no way for me or anybody dealing with me to know who I am, the knowledge literally was not there. Many autistic people in my generation will die without ever knowing, all autistic people in older generations died without ever knowing. I have gotten to know the profound relief and explanations of getting a very late diagnosis and have gotten to use the knowledge to my benefit. I am very appreciative of that privilege.


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18 Jul 2022, 4:43 am

I have no doubt that knowing about my autism even at my late age has meant a world of difference to me. I no longer have self hatred because I continually fail at social things and am last to understand the gist of any conversation in "real time".

I no longer blame myself because I simply "don't get it".
I no longer hate myself because I had believed all the things I was told about everything being "all my fault".
I learned that autism worked in my life every single day in so many ways without my ever understanding how it did that, or why.

Now I know and can see and understand my neurological strengths and weaknesses I can stop blaming and punishing myself and wanting to die of humiliation and hopelessness.

I began to suspect I was autistic in my late 60s, got diagnosis at age 68, and two years later at age 70 I am sorting out my sordid and painful past and having so many "aha" moments when I see how autism was behind so many of those horrible "why" questions of my life.

I have never felt better in my mind and my heart, have been able to forgive myself as well as others for the past. Nobody knew!

Diagnosis can be profoundly insightful and healing.
It has made all the difference in my life and it is such a relief to know now what I did not know or understand all those long years of my life.

Finally everything makes sense and is in better alignment and perspective. I can self accommodate and make adjustments in my own life to make things easier and better.

Wishing all the best as you begin to explore from this new perspective. For me it has been close to a miracle.


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18 Jul 2022, 7:06 am

I was diagnosed at age 8 but, personally speaking only, I know I would have been better off without having a diagnosis. OK I needed extra support with my work in school but socially I probably would have been better off at least not knowing I have a diagnosis or not having a diagnosis at all.

The minute I was diagnosed word got around the whole family, and to family friends, in so time flat, and it was all beyond my control. Even my classmates were told, which didn't go down very well. Kids and mental diagnoses do not mix. So you're foolish if you believe that telling a child's classmates about something like autism will make the classmates understand and accept the child. Neurotypical children are not going to take the time to understand a classmate with an ASD or ADHD. Some may, but most won't. I had a classmate who had a sibling with severe autism so you'd think she'd understand me more but she turned out nasty towards me.

I was the type of child to really want to be normal, and I even felt normal before the diagnosis. I just felt a little slower in learning, that's all. So if I hadn't have been diagnosed I probably would have just got on with it even if I might have felt a little different at times. But I only felt shy and nervous, and the label of Asperger's itself actually made me feel more miserable and different than the actual disorder.

I wish psychiatrists knew that instead of forcing my parents to get me diagnosed. I'd rather it was just brushed under the carpet to be honest.


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kraftiekortie
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18 Jul 2022, 7:35 am

Did you just have a birthday, Joe?

I was diagnosed as a preschool child. I didn't know it was "autism" until I became much older. But it was autism. I had no speech until age 5, and I was oblivious to the world. Until I was 11, I was in some schools for "brain-injured/damaged" or "emotionally disturbed" children. Then I went to "regular school" for about three years, almost getting expelled in the process. Then I went to another "special school" for "gifted underachievers" for high school.

What was probably good: being treated, for the most part, like a "normal" child.



Joe90
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18 Jul 2022, 7:51 am

Quote:
Did you just have a birthday, Joe?


I did back in April. Why you ask? :)

I suppose they had more reason to diagnose you as a child because of your speech delays and not speaking until age 5. That's a big sign that something is "wrong" and can't be missed easily.

Me, I only showed peculiar behaviour (that was out of character for me) during my first few weeks of starting school at age 4. Otherwise, my development was normal and I had no speech delays. I was a sociable child, made eye contact naturally and was interested in people, toys and the world around me. I still think they should have just diagnosed me with an anxiety disorder and I did display more ADHD traits than ASD, but being so it was the 1990s I don't think they diagnosed children with mental health sort of disorders like anxiety, and ADHD was only a naughty schoolboy disorder.


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kraftiekortie
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18 Jul 2022, 7:56 am

Your age said "31" until very recently.

Happy (very belated) birthday----though I might have wished you a Happy Birthday back in April. I'm bad with birthdays, actually.

Yep....it was very evident I was autistic when I was a toddler, even. I remember being dragged from doctor to doctor on the subway. Sometimes, my mother dragged me down the stairs so as to not miss a train. Fun times!



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18 Jul 2022, 9:16 am

I muddled through life OK, retired at age 56, and only discovered I was Autistic when I was 64.

Of course, long before I was diagnosed I was becoming increasingly suspicious that I must really be different from most people. But I did not suspect Autism.

Since I muddled through life OK (ASD Level 1—Mild) I think getting the diagnosis early in life would've created more problems than it solved. That label could've interfered in things. I was probably better off just being odd.

But getting diagnosed later in life was, I think, OK. My lifestyle was secure. My friends and family already knew I had quirks but had done well for myself. I think getting the diagnosis was wonderful (it explained so much) but getting it later in life kept the diagnosis from getting in the way.

Two notes:

<=>- Immediately after I was diagnosed I had a different medical adventure.
<=>+And then came the COVID Pandemic.
<=>+Me and my diagnosis have not been out much together.
<=>+Strictly speaking, I don't know how most of the folk in my life
<=>+will react when they learn I'm Autistic.

<=>- 64! I could've died without ever finding out I was Autistic.
<=>+Finding out a decade or so sooner might've been nice.


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18 Jul 2022, 9:53 am

I think that being diagnosed as early as possible is actually a good thing. I don't agree that every intervention that we do these days for little Autistic kids is a good thing. I think it's good to know but we have to be very careful as to what we do with the knowledge when kids are that young.


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