Adult Diagnosis and re-evaluating everything

[scarletnymph]

I'm not sure this is in the right place on the forum, but one of the biggest things that has been really hard for me since I was diagnosed with ASD two years ago has been re-evaluating everything I thought I knew about myself and the world really.

For instance, I always wondered why I could see patterns in things or see social things in a way other people didn't see. It set me a part. I told myself it was because I had a High IQ, but other people I knew with High IQs couldn't see it either. Now I know it was probably because of ASD.

There were several unusual things I did as a kid that my family always attributed to my intelligence. "oh look what she did, she's so smart" and for a long time I just accepted that. Now I realize that at least some of those things I did were likely due to ASD and not intelligence.

Not to mention things I struggled with and continue to struggle with, like cursive writing, or sensory perception issues, now suddenly make sense. Difficulties getting along with people, maintaining relationships, doing my job - all have to be questioned and re-evaluated.

Also, things like re-evaluating the way I would describe myself. Like I never considered myself detail oriented until I was diagnosed and they told me I was detail oriented, which has caused me to re-evaluate why I thought otherwise and look at things I overlooked before and realize that is being detail oriented.

This whole process of re-processing and re-evaluating my entire life and sense of self has been and continues to be very difficult and stressful. Sometimes I find things I don't like or are hard to accept, other times re-evaluation can be reassuring, but also frightening because I worry about using ASD to excuse behavior I shouldn't, etc.

Is this an experience other adult diagnosed people have had? and how have you coped with it? does it get better? Do you eventually just get comfortable with yourself again rather than constantly questioning everything about yourself or wondering how some quirk or problem or thought process you have had forever might actually be related to or caused by ASD?

 

[Thinx]

Well it depends what meaning you are attaching to the phrase 'it's because of ASD'. Do you mean by that, it's because I have a different neurology/am not neurotypical? A lot of people say and prefer, ASC, C standing for Condition not Disorder, as otherwise, if you say something is because of ASD you are literally saying 'this is disordered'. But maybe it's just different?

Thinking about other minorities, often the dominant majorities or views or cultures can have the effect of skewing the way differences are seen or understood, usually to make differences seem negative in some way, or less preferable, or deviant.

Like a neurotypical, we have some aspects that are part of our neurology. And like say, with heterosexuality, where all the other sexualities end up stigmatised, ways we are different can get stigmatised. You have aspects that are great, and are probably part of the mixed package of your ASC, but it all feels somehow not as good because it's a minority neurology, rather than being neurotypical?

It's the experience of being stigmatised, I would suggest, rather than anything about you personally, that you are feeling. You haven't fundamentally changed, you are still the person you were before diagnosis, with your challenges and your strengths, but society often stigmatises non majority groups. 'Homosexuality' as it was called pre-acceptance and greater understanding, used to be diagnosed, illegal, and treated with hormones that had distressing effects on people. Being anything but a white person was similarly seen as automatically negative, lesser.

We are different, but not lesser. Looking carefully at majority cultures can also discern negative aspects, despite they are seen as 'normal'. Neurotypicality isn't a guarantee of being problem free. Hey why do those guys network and do the other stuff they do? Oh yeah, it's because they have neurotypicality....

 

[Raggamuffin]

"re-processing and re-evaluating" which is causing stress. If you have identified the stressors, you need to work at easing up on the behaviours that are upsetting you.

ASD is part of you - not apart from you. There needn't be any undue pressure to try and change who you are, or categorise things into what is and isn't due to your diagnosis.

You've naturally thought and acted in a certain way throughout your life. A lot of this will inevitably be influenced by ASD. However, you should try to avoid obsessively picking apart and labelling everything that you assume should now be associated with your diagnosis. We are more than the sum of any diagnosis.

Ed

 

[Alexej]

Hi @scarletnymph

I totally get the issue of re-evaluating. I was diagnosed at 64, just under 2 years ago.

I am having to reevaluate so much of what I have understood about my life, how I am, why I am this way, why certain things have panned out a certain way. Then there are other aspects of autism that I am understanding and then it is a question of whether that applies to me or whether it does not. It is quite bewildering

 

[Bert22]

This all sounds like my own experience. I've always been told I'm bright, clever etc and people often ask my for help or support because of that. I've always been detail oriented (its a selling point I've used on my CV since I first had one) so I haven't had to think about changing the way I present in work places, and friends have long taken for granted that if you can't remember something or need a second opinion they will ask me..

But I too have spent the time since my diagnosis trying to separate who I am from the effective mask I've constructed over several decades. It's especially challenging as I've spent some time looking at various groups online to find one that seems to help me, and there seems to be a lot of talking about how we should never mask, be ourselves, rejected "ableism" (a term I still don't really understand). On the spectrum or not, life is hard work. If my behaviour bothers people I care about, and I can moderate it, it seems right that I should do this, especially for people who have always made allowances for me when noone knew I have autism. From what I can tell, this is what friends do, they support you and love you regardless. Employers are a different matter, as they have to make allowances, but its very hard to approach employment differently so I'm a little lost on that side of things.

The thing I've found hardest is describing how I feel and how my behaviour looks from my side. It's standard bonding behaviour to say things that are basically "that's the same for everyone" to make you feel included, and its frustrating when trying to describe masking when friends or family respond with "that's the same for everyone". They mean well, but lack of awareness means it makes me feel less included. I've been lucky, my friends have become even more supportive and tolerant than they were.

If only I could figure out romantic relationships.. I now understand my history, but that doesn't help me find someone..

 

[Telepath John]

For instance, I always wondered why I could see patterns in things or see social things in a way other people didn't see. It set me a part. I told myself it was because I had a High IQ, but other people I knew with High IQs couldn't see it either. Now I know it was probably because of ASD.

My understanding is that those with ASD think differently. Earlier in life I convinced that others were not thinking or reflecting on issues which I could see as being easily solved. In reality, they are unable to do this.

The reflection process for those with ASD is more evolved. It really has nothing to do with IQ. There are some very smart people who can not comprehend what is plainly obvious to me.

How to get along in a world where most are retarded is another issue. I find it best to be in love with the way everyone is. I see others as like innocent children who have yet to be able to reason out things on their own.

Humanity is at a very early stage of awakening. Those with ASD are ahead of the curve in many respects. Yet we can not help any one other than our self with evolving greater awareness.

I trust that the divine creator, who has equally intense love for all she creates, has a plan that services each of us. That those of us with ASD serve a purpose along with those without this particular skill set.

John

 

[Varzar]

I figured out I was AS about 2 or 3 years ago.
I went through much of the same things as you (both growing up, and the reevaluating after figuring it out).

I personally didn't find the re-evaluation process to be stressful though. For me, it was just like constant "Ah HA!" moments. Things from my past that never quite made sense suddenly coming together like a jigsaw puzzle.

I was cautious (and still am) about not using AS to excuse something that is just a bad behaviour. Even if it is AS related, I see no reason I can't work to better myself.

Over time though, I would say I have less and less to re-evaluate, and I have felt more and more comfortable with this new understanding of myself. So, I'm sure you'll get to that point too.
Try not to stress too much, enjoy the journey of self-discovery.

 

[Tom]

To try and give a brief answer to the part 'does it get easier and do you get comfortable with yourself' I would say for me it has. But is has taken quite a bit of time and I am still tweaking it so-to-speak. I always knew I was 'different' but it wasn't till my late 30's that I learned about ASD-1 and suspect I had it. For me it has been a process of learning when it was my autistic side at work and determining if it was having a positive, neutral or negative effect. Sorting things out at first can be perplexing, but in time you see the same type situations reaccurring and having already figured it out a few times pretty much know the answer without having to re-do the mental work.

I think it may be easier for some then others though. In the 10 years I have been on autism forums I note that while many do come to terms with it and are at peace with themselves, others seem locked in perpetual stuggles. It may just be a reflection of how varied in detail and perhaps severity, the autistic condition is. And as far as conditions go, autism loves company and it's a rare person on the spectrum that doesn't also have co-morbid conditions that may also being complicating things.

 

[Shamar]

I'm not sure this is in the right place on the forum, but one of the biggest things that has been really hard for me since I was diagnosed with ASD two years ago has been re-evaluating everything I thought I knew about myself and the world really.

For instance, I always wondered why I could see patterns in things or see social things in a way other people didn't see. It set me a part. I told myself it was because I had a High IQ, but other people I knew with High IQs couldn't see it either. Now I know it was probably because of ASD.

There were several unusual things I did as a kid that my family always attributed to my intelligence. "oh look what she did, she's so smart" and for a long time I just accepted that. Now I realize that at least some of those things I did were likely due to ASD and not intelligence.

Not to mention things I struggled with and continue to struggle with, like cursive writing, or sensory perception issues, now suddenly make sense. Difficulties getting along with people, maintaining relationships, doing my job - all have to be questioned and re-evaluated.

Also, things like re-evaluating the way I would describe myself. Like I never considered myself detail oriented until I was diagnosed and they told me I was detail oriented, which has caused me to re-evaluate why I thought otherwise and look at things I overlooked before and realize that is being detail oriented.

This whole process of re-processing and re-evaluating my entire life and sense of self has been and continues to be very difficult and stressful. Sometimes I find things I don't like or are hard to accept, other times re-evaluation can be reassuring, but also frightening because I worry about using ASD to excuse behavior I shouldn't, etc.

Is this an experience other adult diagnosed people have had? and how have you coped with it? does it get better? Do you eventually just get comfortable with yourself again rather than constantly questioning everything about yourself or wondering how some quirk or problem or thought process you have had forever might actually be related to or caused by ASD?

The thing about an adult ASD diagnosis, as you have learned (mine is Aspergers, PDD-NOS, AD(no H)D, anthrophobia fear of people), social anxiety (crippling), alexithemia (emotional disconnect)), is that it explains so much of your life. Until my diagnosis, I constantly wondered why I never fit in, why I was always an outsider, why everyone else was socially aware while I was not, and some of my habits. My diagnosis explained all that.

I have since learned my strengths and weaknesses. It explains why I was never able to understand social interaction (non verbal communication does not register). My understanding of things obvious to me that others do not see (and vice-versa). My looking for repeats in tiles and artificial stone.

A diagnosis like this is a wonderful opportunity to learn about yourself. But don't just learn, embrace what you have learned. It will make you a stronger person.

I am still coming to terms with it after 10 years. I appreciate the understanding of myself, but I am still angry that nobody noticed, despite all the obvious signs.

 

[Barymore]

Hi there
I have had the same experience as @Tom - it has gotten easier. But its been (and still is sometimes) a process. After a honeymoon phase of *yay* now I know! There was a very down phase of "I will never be able to change" and "society sees me as disabled". That was a period I just tried to get through as best I could. After that it got better and mostly has been ok. I am of a similar view to @Varzar, that a diagnosis isnt an excuse not to change but an explanation of where my starting point is. I have found I am able to change some things - through therapy, through changes in my life and environment and in carefully choosing who I surround myself with. I also dont think all of it is "just" ASD, other things contribute to my personhood and the issues that I have.
But I havent faced issues with my Identity as such due to my ASD diagnosis - alot of things just suddenly made sense.

 

[scarletnymph]

Wow. Thank you so much for your replies. This is a lot of positive feedback and I really appreciate you taking the time.

I do want to respond to some of the things people said, but I want to think about what I want to say first.

I am not sure if I'll get to my response today, but I wanted to make sure I said something for your kindness.

 

[Streetwise]

I'm not sure this is in the right place on the forum, but one of the biggest things that has been really hard for me since I was diagnosed with ASD two years ago has been re-evaluating everything I thought I knew about myself and the world really.

For instance, I always wondered why I could see patterns in things or see social things in a way other people didn't see. It set me a part. I told myself it was because I had a High IQ, but other people I knew with High IQs couldn't see it either. Now I know it was probably because of ASD.

There were several unusual things I did as a kid that my family always attributed to my intelligence. "oh look what she did, she's so smart" and for a long time I just accepted that. Now I realize that at least some of those things I did were likely due to ASD and not intelligence.

Not to mention things I struggled with and continue to struggle with, like cursive writing, or sensory perception issues, now suddenly make sense. Difficulties getting along with people, maintaining relationships, doing my job - all have to be questioned and re-evaluated.

Also, things like re-evaluating the way I would describe myself. Like I never considered myself detail oriented until I was diagnosed and they told me I was detail oriented, which has caused me to re-evaluate why I thought otherwise and look at things I overlooked before and realize that is being detail oriented.

This whole process of re-processing and re-evaluating my entire life and sense of self has been and continues to be very difficult and stressful. Sometimes I find things I don't like or are hard to accept, other times re-evaluation can be reassuring, but also frightening because I worry about using ASD to excuse behavior I shouldn't, etc.

Is this an experience other adult diagnosed people have had? and how have you coped with it? does it get better? Do you eventually just get comfortable with yourself again rather than constantly questioning everything about yourself or wondering how some quirk or problem or thought process you have had forever might actually be related to or caused by ASD?

Nope hasn't got easier!.
I'm a Christian Zionist so within the people group with autistic neurology it's even harder, I don't have politically correct views and there is no forum for my group ,so I suffer ,you can't openly discuss your faith to it's fullest extent ,so it's like being in the underground church in china.

I don't have support from blood relatives.

 

[scarletnymph]

I'm a Christian Zionist so within the people group with autistic neurology it's even harder, I don't have politically correct views and there is no forum for my group ,so I suffer ,you can't openly discuss your faith to it's fullest extent ,so it's like being in the underground church in china.

Did your diagnosis change your faith or how you saw your faith ... political views ... etc? Did getting diagnosed make your situation harder?

In some ways getting diagnosed has impacted how I see my own faith ... I sometimes wonder if the reason I believe what I believe has to do with the way I tried to relate to a world that I didn't fit into when I didn't know I had ASD. Having ASD kind of explained why I didn't fit ... why I felt alien or different ... and I think some of my faith also may have been about explaining those same things. So far I haven't changed my faith ... but I do question it in a way I didn't before.

As for things like political views ... getting diagnosed has made that easier for me personally ... I'm still typically far from any kind of accepted political views ... but now I know its just because my brain is different and not because I have some kind of abberant personality or something. That details I see in the world that make me take an unusual stance are actually things other people can't see ... so its not that we see the same things and I came to a different and socially unacceptable conclusion ... its that we actually perceive the situation differently.

I totally understand family being a problem as a result of an ASD diagnosis. My family refuses to accept my diagnosis, they don't even believe high-functioning autism or ADHD are real, they just think its people trying to give excuses for bad behavior. They also keep getting mad at me any time I say something they consider a product of my intelligence is possibly more related to ASD. They say I'm trying to take beautiful things I did and make them ugly and bad so I can hate myself.

However, I normally don't care much what they think. They also sent me to straight camp when I was a teenager, basically brain washing me into thinking I was christian and hetero-sexual. They blamed me when my x-husband raped me and beat me after I started questioning my sexuality again. They still refuse to acknowledge that my girlfriend is my girlfriend ... they will only refer to her as my roommate. So they are NOT my favorite people. Sometimes we are better off without family.

 

[Streetwise]

Did your diagnosis change your faith or how you saw your faith ... political views ... etc? Did getting diagnosed make your situation harder?

In some ways getting diagnosed has impacted how I see my own faith ... I sometimes wonder if the reason I believe what I believe has to do with the way I tried to relate to a world that I didn't fit into when I didn't know I had ASD. Having ASD kind of explained why I didn't fit ... why I felt alien or different ... and I think some of my faith also may have been about explaining those same things. So far I haven't changed my faith ... but I do question it in a way I didn't before.

As for things like political views ... getting diagnosed has made that easier for me personally ... I'm still typically far from any kind of accepted political views ... but now I know its just because my brain is different and not because I have some kind of abberant personality or something. That details I see in the world that make me take an unusual stance are actually things other people can't see ... so its not that we see the same things and I came to a different and socially unacceptable conclusion ... its that we actually perceive the situation differently.

I totally understand family being a problem as a result of an ASD diagnosis. My family refuses to accept my diagnosis, they don't even believe high-functioning autism or ADHD are real, they just think its people trying to give excuses for bad behavior. They also keep getting mad at me any time I say something they consider a product of my intelligence is possibly more related to ASD. They say I'm trying to take beautiful things I did and make them ugly and bad so I can hate myself.

However, I normally don't care much what they think. They also sent me to straight camp when I was a teenager, basically brain washing me into thinking I was christian and hetero-sexual. They blamed me when my x-husband raped me and beat me after I started questioning my sexuality again. They still refuse to acknowledge that my girlfriend is my girlfriend ... they will only refer to her as my roommate. So they are NOT my favorite people. Sometimes we are better off without family.

As they believe what they believe ,so you do the same, my faith isn't political at all ,Christian Zionism is about acknowledging the Jews as the writers of Torah and some of the New covenant ,that JHVH gave the land to them as a sign to the world! he loves so much! and what all people could have if they loved him ,also support the Hebrews(I don't like saying Jews as after watching documentaries about the second world war it's smacked of fascism (especially kristallnacht the night of broken glass) towards the Hebrews) which fulfills prophecies in Torah.
My family were the same about Christianity ,but in a very you don't talk about it that's fine with me ,which me being me meant I couldn't really spend any time with them ,as I refuse to only discuss what they are interested in.