Recently diagnosed

[Mr_F_]

Hi everyone,

At the age of 41 I received a diagnosis of level 1 autism yesterday. I initially felt relief in a way, as I have struggled all of my life and feel like I was always searching for answers as to why I am different to most. Social situations have always been impossible - to a point where I had walked out of a friends wedding in the past due to the overwhelming sensory issues with sounds (one of hundreds of occasions this happened for me). In the past I have managed to black out those feelings through alcohol but since I quit drinking my senses really heightened and became unbearable so I therefore retreat back into my safe place and simply avoid any social setting.

I endured many years of emotional and verbal abuse growing up so I suffer a lot of childhood trauma - My father would call me retarded and weird. My parents always referred to me as a problem child. I guess the reality is they didn't realise I was autistic but I can't help but feel hatred towards them for not trying to get me help instead of ridiculing me for being different and a problem. I cut my ties with them over 7 years ago - Part of me feels like I should contact them to tell them of my diagnosis but for me I think they lost the right to know anything else about me now.

I had the realisation that I may have autism when studying towards a psychology degree of all places. The number of traits I identified with was scary, so I researched obsessively, as I am sure a lot of people with autism do anyway! My GP was as good as useless in offering support, so I paid to have a private ASD assessment and my diagnosis was confirmed.

Aside from the initial relief I really struggle to identify my emotions. Like I feel like I should have cried when given the news as this answers so many of my lifelong questions, but my brains always felt like it cannot trigger to right emotion at the right time. So these tears will likely come at the most random of times and places - Is this quite normal with autism?

Sorry for the long first post, but I guess I feel quite alone right now and would like to connect with others in a similar place to me. I am now wanting to try and move forward and learn to manage my autism so I can try to live a life where I can be at acceptance with who I am and not struggle so much. I don't want this to define me but I also know work needs to be done so make those unbearable situations a little more manageable.

Are there such things as support groups where adults with autism come together and chat? I am based in Kent, so unsure if there are any groups nearby. As awful as the social aspect of a support group would be, I just feel like chatting with others like minded will help normalise the way I have felt all of my life.

Would welcome any recommendations and ideas to help me.

Many thanks.

 

[tree]

 

[Shamar]

Welcome. You will find your story a lot in here, it is not unusual. Many of us were diagnosed late in life, after a lifetime of knowing we were different and not understanding why. I was diagnosed at age 6o, and several others here were at about that same age. The diagnosis does not change who you are, but certainly gives insight into your life and behaviors. Also in my case there were many alleged experts experts who were given a list of the diagnostic criteria and failed to recognize it. I am still bothered by not having been diagnosed years earlier. Anyway, you are starting a journey along a new path you never expected. Good luck.

 

[wards]

Welcome to the forum, congratulations on your diagnosis. I too got diagnosed late on (39), nice to meet you.

 

[Nitro]

 

[Neonatal RRT]

Hi everyone,

At the age of 41 I received a diagnosis of level 1 autism yesterday. I initially felt relief in a way, as I have struggled all of my life and feel like I was always searching for answers as to why I am different to most.

I guess the reality is they didn't realise I was autistic but I can't help but feel hatred towards them for not trying to get me help instead of ridiculing me for being different and a problem. I cut my ties with them over 7 years ago - Part of me feels like I should contact them to tell them of my diagnosis but for me I think they lost the right to know anything else about me now.

Aside from the initial relief I really struggle to identify my emotions. Like I feel like I should have cried when given the news as this answers so many of my lifelong questions, but my brains always felt like it cannot trigger to right emotion at the right time. So these tears will likely come at the most random of times and places - Is this quite normal with autism?

First of all, welcome to the club!

You're right, parents back in the day had no clue, neither did our doctors. Unless you had "significant" deficits, autism wasn't on their radar.

Your family, certainly by now, have made their own "moral diagnosis" of you. My parents did, as did my siblings. The moment I brought up the term "autism" they immediately rejected it. Like you, I cut my ties with them.

A significant percentage of folks with autism also have alexithymia, which you're description pretty much sums it up. You sense something almost physiological in the background, but not able to really sort it out until later, seconds, minutes, hours, days, weeks later. Sometimes there's a significant delay. It took me almost 4 years to process and grieve the death of my little brother as a child. I made an absolute fool of myself openly grieving the death of my second brother when it happened, and yet I am still confused as to why I was grieving,...was it for his wife and children,...or was it for my own loss? I may never know. I have yet to grieve the death of my father years later. Sometimes the emotions come out violently and without warning. They seem to be ON or OFF, with little ability to modulate them. Personally, NO good has come from me exhibiting emotions, happy, sad, anger, frustration, none of it. At the very least I make a fool of myself and it's embarrassing. The worst, well, let's not go there. A good amount of mental energy is spent inhibiting emotions.

Alexithymia - Wikipedia

en.wikipedia.org

 

[Rodafina]

Hello and welcome! I hope you find what you are looking for here. This is definitely a place where I started to feel less alone in the world. Even though we are all separate from each other, so many of our experiences are similar and genuine understanding is something I frequently encounter here.

 

[Mr_F_]

First of all, welcome to the club!

You're right, parents back in the day had no clue, neither did our doctors. Unless you had "significant" deficits, autism wasn't on their radar.

Your family, certainly by now, have made their own "moral diagnosis" of you. My parents did, as did my siblings. The moment I brought up the term "autism" they immediately rejected it. Like you, I cut my ties with them.

A significant percentage of folks with autism also have alexithymia, which you're description pretty much sums it up. You sense something almost physiological in the background, but not able to really sort it out until later, seconds, minutes, hours, days, weeks later. Sometimes there's a significant delay. It took me almost 4 years to process and grieve the death of my little brother as a child. I made an absolute fool of myself openly grieving the death of my second brother when it happened, and yet I am still confused as to why I was grieving,...was it for his wife and children,...or was it for my own loss? I may never know. I have yet to grieve the death of my father years later. Sometimes the emotions come out violently and without warning. They seem to be ON or OFF, with little ability to modulate them. Personally, NO good has come from me exhibiting emotions, happy, sad, anger, frustration, none of it. At the very least I make a fool of myself and it's embarrassing. The worst, well, let's not go there. A good amount of mental energy is spent inhibiting emotions.

Alexithymia - Wikipedia

en.wikipedia.org

I have seen people mention alexithymia so I will be sure to read up about that as I really do struggle with my emotions, and always have done. I can count on one hand the number of times I can remember crying in my life and those times have always been at the completely wrong time and place!

I can appreciate what you are saying regarding the grieving process and I am very sorry to hear of your losses mentioned - I lost my grandad 5 or 6 years ago and I just could not show any grief for love nor money! He was the person I was closest to in my cruel and messed up family. He always sensed something wasn't right with me, but he didn't once judge or belittle/ bully me as my parents and siblings did.

Cutting ties was the best thing I ever did to be honest - People say you can't choose your family, but I completely disagree if they make you feel like the lowest of the low and totally worthless.

Thanks for the message by the way.

 

[Mr_F_]

Welcome. You will find your story a lot in here, it is not unusual. Many of us were diagnosed late in life, after a lifetime of knowing we were different and not understanding why. I was diagnosed at age 6o, and several others here were at about that same age. The diagnosis does not change who you are, but certainly gives insight into your life and behaviors. Also in my case there were many alleged experts experts who were given a list of the diagnostic criteria and failed to recognize it. I am still bothered by not having been diagnosed years earlier. Anyway, you are starting a journey along a new path you never expected. Good luck.

Thanks for the message. It really does give reasons for many of my behaviours throughout my life. It answers SO many questions, and explains even more about why I have always been the way I am. Its almost like a revelation in its own right. Just now need to learn how to move forward.

 

[VictorR]

Welcome!

I hope you find a group nearby where you can connect and perhaps find support but there's if course many online communities as well like this one.

 

[AndyFBlues]

Welcome to the forum!

You're in the right place. A lot of us didn't get diagnosed until later in life. Back in the day, many doctors didn't recognize what was going on unless the situation was impossible to ignore. Even then, there were instances of misdiagnoses. I hope it's better for the young kids coming up these days.

I endured many years of emotional and verbal abuse growing up so I suffer a lot of childhood trauma - My father would call me retarded and weird. My parents always referred to me as a problem child.

I experienced plenty of that growing up too. Stupid, Dummy, Retard; I got all of that as a child. It seemed like nothing that I did was ever good enough.

 

[Mr_F_]

Welcome to the forum!

You're in the right place. A lot of us didn't get diagnosed until later in life. Back in the day, many doctors didn't recognize what was going on unless the situation was impossible to ignore. Even then, there were instances of misdiagnoses. I hope it's better for the young kids coming up these days.


I experienced plenty of that growing up too. Stupid, Dummy, Retard; I got all of that as a child. It seemed like nothing that I did was ever good enough.

Hi Andy,

I will be honest I was quite oblivious to what autism was until I was reading about it on my degree that I study part time! When I found myself identifying with the majority of the traits it was an 'oh my god' moment. Its really reassuring to hear of how many others weren't diagnosed until later in life. Totally get what you mean about youngsters growing up - I think back now and I 100% displayed the same signs of autism as a child like preferring my own company, escaping away from all the noises into my bedroom all day long, etc. To me now, it seems so obvious, but like you say it just wasn't recognised back then like it appears to be today.

 

[Ghostinthemachine]

Hi @MrF and welcome,it sounds that your history and mine are exceptionally similar even down to the psychology study.i hope you find this forum a safe place to learn more and gain support,see you around