Anyone else felt a lot worse because of the diagnosis?

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brane75
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17 Apr 2022, 8:42 am

To clarify, i was diagnosed 10 years ago, at the age of 12, along with comorbid ADD but i wasn't ever really aware of what either of it is until i was 20. Dad drove me to countless therapists and docs but openly has no clue how to deal with me. I consider him an okay parent, we have a decent relationship but it's always an awkward attempt to evade small talk. Mom was always an excellent support (her field is pedagogy anyway) and has lots of sympathy and tolerance for my s**t but always wanted to remain silent over telling exactly what everything is about because she was afraid it would make me turbo anxious. And bloody hell, it has.



I live in a very tough and demanding part of rural Croatia and i don't think 10 percent of people in my country either know it or take it seriously. Half of the folks don't even consider ADD a real disorder. Very survival based mindset, but understandably and justifibly so, given the place's history. I don't really dislike the people here, hell, dislike of small-talk, brutal honesty and a slow lifestyle are one of my culture's favourite traits, but the lack of empathy from their side can be very agonizing. I know i'm treated like a mentally disabled weirdo at certain times but i don't like getting into conflicts ever since i was 13 beacuse i feel like it's a waste of energy and time. Even though my social skills mostly suck balls, i wanna be good with everyone but i feel like it just won't work like that anymore. I've been hyperfocusing for almost a year now over the syndrome itself, the brain chemistry, neurotransmitters, cells, their functions etc. Developed insomnia due to this too, i think this is actually the first hyperfocus level interest in my life because i always hated having one. I just flat-out hate limiting my life to a narrow scope of interests because i wanna know as much of the world as possible and i had moral principles which characterized hyperfocus as bad for executive functioning....maybe that was a hyperfocus too? f*****g hell! Or maybe i was just afraid of being myself. Thanks ADD and social phobia. Also fixated/hyper-invested on my daily anxieties and constant replay of past life events (both good and bad. but mostly bad) and dreadfully question identity. It's daunting to know i should have hyperfocused on my interests more, many people say i have great potential but i have a subconscious fear that being too confident will make me too cocky and control-freaky. Gotta have morals man. Also trying to view a whole life with a different frame and it's making the aspie control-freak side of me angry, and i still mask in most of social situations. Also got more agressive in conversations with other people even though i used to be peaceful or semi - silent with them a large majority of the time (though mostly anxious over stating my opinion and over whether i was wrong or not).



Two years into getting to know Aspergers; i am completely left confused over my identity and i don't feel like associating my soul/persona/whatever with a mental disorder (or being differently hardwired if it's offensive). I even got the compulsive wish to be social for the last year or so, to get to know people living in my town whole life that i've never really broadly met, but it's a blatant defence mechanism against identity anxiety and boredom. I do have three or four very decent friends (one of whom knows what both ASD and ADD are) and it's ideal for an Aspie - no strict attachments, chats over big topics, joking around etc. But i don't see those people frequently, maybe once or twice per month or so. I wondered if i have CPTSD but i don't think my past events were traumatic as much as i always kept overthinking every tiny little mistake in an annoying OCD manner.



tldr: I don't hate other people as much as i keep criticizing myself for not having enough balls in life to be a bit more direct and self-oriented. It's become an inner religious conflict really.



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18 Apr 2022, 6:30 am

The torrent of thoughts you describe and intensity of focus are rather common traits. If it is any comfort, the skill to manage things can start to work in one's 20s. Mastering focus can be somewhat similar to driving a car. You cannot only stare at the speedometer, you need also to periodically scan around the vehicle. In a similar way, you can force yourself to break the intensity to focus one something peripheral even if only briefly. This can allow you to take increasingly greater control.

You might consider some volunteer work as a way to improve social contacts. The centrality of a task at hand can help you refrain from being too intense with others. The ability to dial back one's social presence is an important skill.



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18 Apr 2022, 7:13 am

it is a lot to sort out, especially when one is busy living life, going to school or work (or both) and living with others. Add the hormones of a young person rapidly approaching adulthood, and that is difficult enough. I found that I spent a lot of time mourning my childhood and youth and wondering how different things might have been if I had known about my autism earlier in life. At least now I have diagnosis I can sort things that happen and understand that the autism has had its part in the scene. I can forgive myself, where before I was punished, blamed and shamed for my (not knowing it was autism) failures. so in one way, I had a lot of sadness and frustration knowing I did have limitations on my abilities, and I was sad about that. but it also gave me an explanation and a self understanding over every "why" question in my life up to that point. Sending best wishes, I hated being a teen, it was the worst period of my life, but I did get through it. I am impressed at how well you articulate your struggles and the insights you have at this point in your life. Many others the same age are completely clueless ( I was one of those). Glad you asked this question. It will be interesting to see what others have to say.


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18 Apr 2022, 8:41 pm

It messed with my self-confidence because it told me that I was probably looked down upon as some kind of nerdy inferior who was prone to make lots of social blunders. But on the plus side, a lot of things about me made more sense to me, and in theory having all that knowledge ought to allow me to make wiser social decisions and to be happier for it. It's a double-edged sword.



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19 Apr 2022, 6:35 am

Mine was conflicted.

A part of me who would've accept the fact I'm different wholeheartedly and it meant I'm free from the social norms and expectations.
One of humility and innocence. One that would say everything suddenly made sense.

And a part of me who refuses the fact that I'm different and all the reasons why I felt so out of place, being 'unable' and 'failing' whatever standard. One of pride and ego. One that would deny and say it didn't made sense.

Pride won.

Took me 2 years to move on.


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19 Apr 2022, 10:19 am

I didn't feel anything. I was diagnosed when I was 3 years old. I had no idea what "feelings" were at that time. I'm not even sure if I knew I was a person then. I was pretty "far gone."



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19 Apr 2022, 7:13 pm

Yes, yet another DX was not what i wanted.


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20 Apr 2022, 11:15 am

I feel personally I would have been better off not getting a diagnosis. I wonder if things would have been different if I went through childhood none the wiser.

I know people say "oh the diagnosis is just a word added on your medical records, makes no difference to what you or your life would have been", but I believe this is a butterfly effect type of thing so I know that I might have felt differently about myself had I not known. I hope people get what I mean.

I can't find much information on the way autism has affected me as an individual (hating the diagnosis and feeling resentful and embarrassed about it). So I feel alone in it.


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Last edited by Joe90 on 20 Apr 2022, 3:34 pm, edited 1 time in total.

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20 Apr 2022, 11:22 am

brane75 wrote:
Anyone else felt a lot worse because of the diagnosis?
"Worse"?  Not really.  However, I do feel:

• Angry because a normal childhood was essentially denied to me.

• Sad because I did not understand why I had no friends and could never get a date.

• Happy because social isolation and self-quarantine are not as problematic for me as they are for others.



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21 Apr 2022, 8:39 pm

I found it liberating and transormative. Understanding followed the startling discovery that I was on the spectrum, despite being very very late diagnosed in my 60s. I was always a "why" person, with a love for knowledge, yet baffled by my own ignorance about unwritten social rules and double talk everyone was "supposed" to know automatically.

Because of my inability to do "small talk" greasing in both social and professional settings, I carried around a lot of internalised self blame - until it all fell into place. That was like a thunderbolt, and finally understanding social dynamics, and the decades of accruing social anxiety, changed my life.

I had never heard of a "neurotypical" in all those years, and didn't understand their hidden codes and capacity for so much discrimination and cruelty. That understanding was another thunderbolt of awareness.

The truth really did set me free.



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22 Apr 2022, 7:04 am

Yes because it wasn’t something I could fix myself but I don’t view autism label as a proper diagnosis anyway.

I’ve since learned the word autism was just an old fashioned name given for a set of behaviors science doesn’t understand.

Ellon Musk supposedly has autism so does the man at your local care home with the mind of a 3 year old.

The symptoms are heterogeneous rather than a straight severely spectrum.

Most scientists now accept “autism” is just an umbrella term for multiple different separate biological issues that have some endpoint symptoms in common.

This gives me more hope of biological treatment being available in the future.

It’s also for this reason that talk of a one “autism identity” is nonsense. How can you have an identity when it’s one day revealed people have multiple different things wrong with them.


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22 Apr 2022, 9:44 pm

SendInTheClowns wrote:
I found it liberating and transormative. Understanding followed the startling discovery that I was on the spectrum, despite being very very late diagnosed in my 60s. I was always a "why" person, with a love for knowledge, yet baffled by my own ignorance about unwritten social rules and double talk everyone was "supposed" to know automatically.

Because of my inability to do "small talk" greasing in both social and professional settings, I carried around a lot of internalised self blame - until it all fell into place. That was like a thunderbolt, and finally understanding social dynamics, and the decades of accruing social anxiety, changed my life.

I had never heard of a "neurotypical" in all those years, and didn't understand their hidden codes and capacity for so much discrimination and cruelty. That understanding was another thunderbolt of awareness.

The truth really did set me free.

I chalked up my poor ability for small talk, not knowing when to speak and when to stay silent, especially in multiperson discussions, and bad eye contact to my character flaws. I assumed everybody else did not like those things either therefore my poor ability to do them was the result of a lack of willpower, me being a weak person. To find out that those were not the reasons makes me view the day that I got diagnosed as my second birthday.

I suspect that all this my diagnosis made me feel great to talk is not helping the OP. Having a negative reaction is both not uncommon and valid. My 8+ years here at WP make me suspect that getting a diagnosis that says you are poor at these
skills and as Carlos said a lifetime condition at an age when one is not mature are harmful in many cases.

carlos55 wrote:
It’s also for this reason that talk of a one “autism identity” is nonsense. How can you have an identity when it’s one day revealed people have multiple different things wrong with them.

Because autism is largely genetic and helps partially define the way I think. The post-diagnosis "this is why I did so and so" revelations were not all about bad decisions and outcomes.


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23 Apr 2022, 1:57 am

I have felt worse since my recent diagnosis at 51, in as much as I am now very much aware and conscious of all my difficulties as they happen. It feels like I have become more extremely Autistic than ever, although I don't really think this is the case. It's just that I am more aware. I may be kind of 'testing the limits' in some way though.

I finally have the correct framework to understand everything now. This is important. It's about learning what I can change and what I can't. For instance, just because I finally understand my difficulties, that doesn't mean that I should expect the neuro-typical world to understand me and to bend over backwards to understand and accommodate me. That is just not going to happen on the whole. Although if and when it ever does happen that would be something to be thankful for. But they are the majority. I have to learn, or re-learn, to how to act in their world as best as I can. I guess it's a similar story for many Autistic folk.



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24 Apr 2022, 6:38 am

The facts have always been helpful to me in the long term; living in denial of the facts has always been unhelpful to me.



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24 Apr 2022, 6:42 am

Living in the unknowing only worked well for so long. The DX gave me freedom to live life free of ignorance and the suffering that can bring.



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24 Apr 2022, 8:20 am

The premise of the book "Very Late Diagnosis of Asperger Syndrome: Autism Spectrum Disorder" (2014) by Philip Wylie, is that the author was very upset by his DX. The book fit me b/c I had a late DX (albeit I was glad for mine). It might fit you b/c you are in turmoil about your DX (albeit it was earlier in your life). I do think how we are treated by others, validated or invalidated is HUGE in how it goes. Part of the sensitivity many of us have.

I'm watching another (USA) author who is writing books to change the culture in regards to Autism. To destigmatize the DX. That is a worthy cause.



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