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Hello, newly diagnosed and struggling a bit....

L

looking for community

New Member
Hello,
This is my first time reaching out to an online support group for anything at all. But, my therapist suggested that searching for a community to connect with (even one online) might help with the struggles I've been recently experiencing.
I am 35 years old, and only recently diagnosed this year (2020) with ASD. I am in the United States, and my diagnosis were I in another country would probably be either High-Functioning Autism or Asperger's Syndrome.
My journey to get a diagnosis was short but very directed. Throughout my life I have had the thought that everyone received some kind of rule book of what do to and how to act...everyone except me. This has had a detrimental effect on my personal relationships, professional life and has (frankly) left me single due to my inability to pick up on subtle social cues, facial expressions, and emotions that others are experiencing. Also, the world was often too loud or too overwhelming to deal with, so most of my activities centered around what was quiet, aesthetically pleasing and able to occupy my hands (I LOVE to fidget). This made my everyday life incredibly stressful. Initially I went to therapy this year because I had gotten to the point of such frustration with these issues that I wanted to get some social training so that I could succeed in the workplace and, hopefully, find a person that I could marry and have a family with. It was relaying my personal history that my therapist suggested that I seek an ASD diagnosis.
When I was diagnosed, a lot of what the disorder was made a lot of sense to me and how I experience the world. However, now that I am approximately 8-months deep into my diagnosis I am experiencing a new sensation...frustration combined with guilt. This stems from the idea that I am autistic enough to not interact with people (or environments) in the way that neurotypicals do, but I am also intelligent enough to realize that I am experiencing a problem. Sometimes I wish either that I didn't have ASD at all, or that I had a much more severe form of the disorder so that I didn't care that I have this diagnosis and/or needed around the clock care without awareness of the rest of the world. It is a very frustrating place to be in. This has caused an additional level of anxiety and frustration because I KNOW why I am experiencing these things...I have ASD. But because I am aware of what that diagnosis means and all that entails, I know that this will be something that I have to work on the rest of my life.
Has anyone else had a similar experience?

Looking for guidance and a community who understands...
 
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Welcome! I went through something very similar. I’m 34, I was diagnosed with Aspergers when I was 29. I went through all five stages of grief after my diagnosis, and I vividly recall being angry at how unfair it all seemed. Angry because I have to struggle so hard at things that come naturally to others, angry because I don’t want to avoid busy and noisy places, angry because I just want a semblance of normalcy in my life.

I’ve since arrived at a place of acceptance (which isn’t to say that I’m not terribly frustrated by my shortcomings every now and then). It takes time though. I can’t tell you that everything will get better, because I don’t know that. But what helped for me is having a better understanding of what does and does not work for me and what I can and can’t do, and trying to arrange my life to best suit that. It did mean letting go of some of my dreams, which still hurts sometimes. But the end result is less stress and a happier me.

I hope you find some comfort in being on this site, I know I have.
 
Bolletje said:
Welcome! I went through something very similar. I’m 34, I was diagnosed with Aspergers when I was 29. I went through all five stages of grief after my diagnosis, and I vividly recall being angry at how unfair it all seemed. Angry because I have to struggle so hard at things that come naturally to others, angry because I don’t want to avoid busy and noisy places, angry because I just want a semblance of normalcy in my life.

I’ve since arrived at a place of acceptance (which isn’t to say that I’m not terribly frustrated by my shortcomings every now and then). It takes time though. I can’t tell you that everything will get better, because I don’t know that. But what helped for me is having a better understanding of what does and does not work for me and what I can and can’t do, and trying to arrange my life to best suit that. It did mean letting go of some of my dreams, which still hurts sometimes. But the end result is less stress and a happier me.

I hope you find some comfort in being on this site, I know I have.
Click to expand...
Exceptionally well said.
 
Hi, welcome. I didn't know what Asperger's was until my late 40's when a friend suggested that I might have it, and I was officially diagnosed at 50. Socially life had just been kinda weird, possibly in much the same way as you experienced from what I can tell. It makes much more sense now. Many on this site have had similar experiences, you're in the right place!

It's frustrating at times, and although that may improve somewhat I expect that it will continue to be somewhat frustrating until I finally find the right person in spite of this or else I well and truly decide to give up completely. There are good days and bad days.

Guilt? I can't empathize there. I don't understand why you would feel guilt from what you've written. I don't mean to undermine your self-expression or de-legitimize your emotions, but I have a vauge idea that if you were to try to explain why you feel guilty we might be able to tell you why you're wrong? I mean, I don't think you should be feeling guilty about being on the spectrum. It is not your fault.
 
MrSpock said:
Hi, welcome. I didn't know what Asperger's was until my late 40's when a friend suggested that I might have it, and I was officially diagnosed at 50. Socially life had just been kinda weird, possibly in much the same way as you experienced from what I can tell. It makes much more sense now. Many on this site have had similar experiences, you're in the right place!

It's frustrating at times, and although that may improve somewhat I expect that it will continue to be somewhat frustrating until I finally find the right person in spite of this or else I well and truly decide to give up completely. There are good days and bad days.

Guilt? I can't empathize there. I don't understand why you would feel guilt from what you've written. I don't mean to undermine your self-expression or de-legitimize your emotions, but I have a vauge idea that if you were to try to explain why you feel guilty we might be able to tell you why you're wrong? I mean, I don't think you should be feeling guilty about being on the spectrum. It is not your fault.
Click to expand...
Hello MrSpock,
I wrote guilt because that is the closest thought that I could come up with. I'm not really sure what to label to affix to it...if I had to come up with something other than 'guilt' it would probably have to be frustration mixed with shame. Frustration because of the diagnosis, and shame because it is very stressful to know your messing up, doing/saying the wrong thing is social situations when I'm "supposed" to know what to do per the neurotypical world and by extension getting into trouble (either personally or professionally) for not following rules that I neither understand or know. And that can be shaming/embarrassing for me.
 
Bolletje said:
Welcome! I went through something very similar. I’m 34, I was diagnosed with Aspergers when I was 29. I went through all five stages of grief after my diagnosis, and I vividly recall being angry at how unfair it all seemed. Angry because I have to struggle so hard at things that come naturally to others, angry because I don’t want to avoid busy and noisy places, angry because I just want a semblance of normalcy in my life.

I’ve since arrived at a place of acceptance (which isn’t to say that I’m not terribly frustrated by my shortcomings every now and then). It takes time though. I can’t tell you that everything will get better, because I don’t know that. But what helped for me is having a better understanding of what does and does not work for me and what I can and can’t do, and trying to arrange my life to best suit that. It did mean letting go of some of my dreams, which still hurts sometimes. But the end result is less stress and a happier me.

I hope you find some comfort in being on this site, I know I have.
Click to expand...
Hello Bolletje,
Everyone's journey is a little different, and I realize that what worked for you may not necessarily work for me. But, how did you work out what you could/couldn't do and how to arrange your life around that? I ask because, as I am going through my diagnosis and looking back at my life so far, I am realizing that much of the changes that I have had to make in the past were mostly to accommodate others and not necessarily what I wanted to do/participate in. How difficult was it for you to take stock of your life and figure out what was truly you and what was the mask you put on to exist in a neurotypical world?
 
Diagnosed at 45 ,5 years ago, no guilt ,even though a CPN(Community psychiatric nurse) said don't rely on autism as an excuse,stuff her!,so you know unless you are autistic as high ,moderate or low ,you would still be for whatever name your neurology is,you can now come under the Autism umbrella but not exactly be autistic,I was probably called very high functioning,it's not called Asperger's syndrome in a lot of countries! as that has given the erroneous idea that the person's life is easy and they are a savant,you are sort of imo ,correctly called ASD1 (I don't believe I have a disorder ,I think my neurology is different)your given the functioning classification for therapists ,so they can try to make you a neurotypical robot,I personally think people labelled ASD2&3 have a health problem ,that a NT has but they are still ASD1 ,a certain percentage of people think you're only autistic if you're ASD3 ,I used to think that ,don't now,but I'm female ,apparently some !what I loosely call therapists!think only males can be autistic.
 
looking for community said:
Hello,
This is my first time reaching out to an online support group for anything at all. But, my therapist suggested that searching for a community to connect with (even one online) might help with the struggles I've been recently experiencing.
I am 35 years old, and only recently diagnosed this year (2020) with ASD. I am in the United States, and my diagnosis were I in another country would probably be either High-Functioning Autism or Asperger's Syndrome.
My journey to get a diagnosis was short but very directed. Throughout my life I have had the thought that everyone received some kind of rule book of what do to and how to act...everyone except me. This has had a detrimental effect on my personal relationships, professional life and has (frankly) left me single due to my inability to pick up on subtle social cues, facial expressions, and emotions that others are experiencing. Also, the world was often too loud or too overwhelming to deal with, so most of my activities centered around what was quiet, aesthetically pleasing and able to occupy my hands (I LOVE to fidget). This made my everyday life incredibly stressful. Initially I went to therapy this year because I had gotten to the point of such frustration with these issues that I wanted to get some social training so that I could succeed in the workplace and, hopefully, find a person that I could marry and have a family with. It was relaying my personal history that my therapist suggested that I seek an ASD diagnosis.
When I was diagnosed, a lot of what the disorder was made a lot of sense to me and how I experience the world. However, now that I am approximately 8-months deep into my diagnosis I am experiencing a new sensation...frustration combined with guilt. This stems from the idea that I am autistic enough to not interact with people (or environments) in the way that neurotypicals do, but I am also intelligent enough to realize that I am experiencing a problem. Sometimes I wish either that I didn't have ASD at all, or that I had a much more severe form of the disorder so that I didn't care that I have this diagnosis and/or needed around the clock care without awareness of the rest of the world. It is a very frustrating place to be in. This has caused an additional level of anxiety and frustration because I KNOW why I am experiencing these things...I have ASD. But because I am aware of what that diagnosis means and all that entails, I know that this will be something that I have to work on the rest of my life.
Has anyone else had a similar experience?

Looking for guidance and a community who understands...
Click to expand...
Welcome to the forum, you sound a lot like my son who is an Aspie, I think there is a lot of frustration especially at first. I know with my son we had never even heard of Asperger's, I really didn't understand what he was going through and I know it was frustrating for him as well as it was for me. He is high functioning but because of his other ailments he cannot work and is on disability. I think that NT's in general do not understand the difference because they have never felt what it was like to be an Aspie. I joined this forum to help understand what my son was going through and see who had similar experiences. Because to an NT you really don't know if it is just him or if there are similar things do to the ASD. This has really helped me to understand that YES most people experience this or feel this way vs/ it is probably just something my son feels. I think you will find this a nice place to speak with people on here. Everyone is so nice here! and open!
 
Hello there and welcome! Much of what you write resonates with me too.... about 7 years since my diagnosis, whole gamut of emotions over that time (some I'm not sure I could identify!). In a pretty good place at the moment, so give it some time to process :)
This forum has been a good find for me!
 
Hello , totally relate to your post and have been diagnosed for 16 years now, i have spent considerable time with regret about my life choices and 'failings' as i saw them to fit in and accept how i act and react to people and situations, i've had a long list of feeling vunerable,missunderstood and of being a outsider and accepting situations i found difficult or unsatisfying so as not to be alone, i also felt i missed the 'rule book of life and being' i allow some people to make me feel 'less than' and am hypersensitive' to criticism, some people seem to spot this and exploit my vulnerability, i have expolored strategies to combat my anxiety and low self esteem......... Mindfulness, meditation, CBT, developing a growth mindset and gratitude, the one thing that works for me is exercise and also having this forum where i feel part of the community, i can express my thoughts and feelings and often get good advice from members, female Autism can present very differently from males and my 'people pleasing', social nature has meant mass masking that can be exhausting and draining, be kind to yourself and try your best to do the things you enjoy and surround yourself when possible with positive people.
 
Hi and welcome. I do think it helps to understand there's an actual neurological reason for why you've been feeling baffled and different. Hopefully you can start to find strategies for the things that are difficult, ways around things. Plenty of ideas and useful discussions here, with others who have similar experiences and challenges. I hope you enjoy it here, and find it supportive.

:airplane::helicopter::rocket::sailboat::snowboarder::swimmer::runner::walking::taxi::car::lorry::bluecar:
 
Welcome! I find comfort in learning of other experiences, and besides online forums, there are also many biographies available as well. It's nice to know that one does not walk alone (except when they want to).
 
Welcome to the forums!

I didn't know about Asperger's either until in my 50's.
I'd known all my life I was different in many ways and didn't care for socialization.
My parents, animals and special interests filled my life.
Anxiety was my worst enemy.

Getting diagnosed, learning what it really is and finding this forum were the most beneficial
for me. I started understanding myself and why my life had been as it was.
On the flip side, I feel the shame you speak of because I know most people are
not educated in what ASD really is. They have this image and we are not all the same.
I don't have low self esteem issues, so I guess it is somewhat a matter of pride.
Give me that pretty mask over there, not the one people think of when they hear
ASD.
 
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