Just getting my head around the idea that it’s not just me

[Steve0001]

Hello everyone. I’ve always felt I was different and have found it difficult to fit in with normal life. I’m 54 years old and at the request of my partner did the self assessment, scoring 43. It’s a real eye opener as up until this point, I thought I was right and everyone else must be wrong.
I must admit to feeling a little overwhelmed although things do make a lot more sense now and I have a general sense of relief. I don’t want to be labeled and wonder how this play out with my employer if I decide to tell them. I also have two grown up daughters and an ex wife who I will tell in due course, although how I broach the subject I haven’t yet thought about.
Knowing that there is a reason that I’m the way I am and that other people have go through this seems a relief in itself.
Does a formal diagnosis help matters and if so, will it appear on my medical records? Is it possible to have a private diagnosis anonymously? As I see it, there’s no cure and just the understanding that there’s a medical reason is enough for me. Does this sound reasonable or am I missing something?

 

[LooseEnds]

Welcome Steve!

I'm in the same boat - 51 and just realising this might be why I've always felt 'different' and had many challenges others don't seem to have. I am going to get a private diagnosis as I want to feel certain, but don't think I need health services support. I very much 'want to know', it feels liberating, almost exciting. There's a lot of info out there to explore.

Feel free to chat with us as you go through your journey.

 

[WereBear]

I self-diagnosed and sought the formal diagnosis later, because:

• I thought it would give me some work protections - wrong about that!
• I thought it would be covered under insurance - wrong about that!
• I thought I could then get professional help with my condition - wrong about that!
• I wanted to know if my own assessment was correct - and it was.
• If I was going to tell people I wanted it to be "official" in case of skepticism or challenge.
• Since I'm in IT, I figured such a diagnosis would be something better understood and accepted than in some other careers - and that was correct.

I only told my boss at the time because his background is IT and I was sure I wasn't his "first rodeo." Sure enough, he was understanding, kind, and supportive. I haven't told my new boss, because she comes from a different background, and prejudice is rampant out there.

I only told the first boss because I had been taking lots of sick leave: I wanted to tell him why, lest I look like a slacker. For my new boss, I got my doctor to write a medical note referring to a "potentially serious chronic condition" (which I am currently managing, medically, by myself because once again, modern medicine is useless about this) and this allowed me to, without disclosing any specifics about my condition, negotiate two days a week to work at home to help mitigate my challenges.

I went through what is now seven years and counting of dealing with my Asperger's and only figured out that was the problem one and a half years ago. So my energy was depleted and my immune system affected by the constant stress, and I'm still climbing out of the pit. So I have an actual health challenge that has manifested in physical symptoms enough that my family doctor (an absolute gem and the only reason I didn't lose it over this ordeal) knows the truth and is willing to help. And I wouldn't have that if I hadn't gotten a physical diagnosis and made it part of my medical record.

As a result, when needed, I have referred to my Aspieness as a "recently diagnosed genetic condition which can only be managed, not cured." This can allow you, as it did me, to potentially get help from the NT world without becoming a target for misconceptions and abuse.

Sorry to add up such a daunting picture. But you wanted, and needed, the facts. Also my circumstances are likely different from yours: I live in a remote area and had to drive three hours to get to a proper diagnostic center, likewise there aren't any local mental health professionals qualified to treat my condition.

But considering how much medical science knows about this state, that has considerable upsides, in my opinion. For one, I'm not being told I have to take psychiatric drugs to cope with my anxiety, (I use therapeutic niacin instead,) and my diagnostician was helpful in ascertaining that I am one of the subsets of people with autism for whom they do not work.

 

[LooseEnds]

Thank you for sharing your experience WereBear, you've given some great tips on how to make use of a diagnosis effectively and what might be good to avoid. I'm glad to hear you are in the 'driver's seat' now and hopefully feeling better for it - considering how long some of us go through life simply feeling 'faulty', and powerless. Thank you x

 

[Beguiling Orbit]

Welcome, @Steve0001!

Soon after I found out (at age 51), I told my boss -- who I thought was my friend. He fired me soon thereafter. Don't tell anyone at work unless you need accommodations. Even then, try to figure it out on your own.

 

[Chance]

Welcome Steve...

My iffy "theory" is don't tell unless it becomes important. Some people you least suspect will treat you differently. It can hurt to find out peoples true colors, but its also healthy to know. So thats ALWAYS your choice. You are in control now... Once you grasp that your LIFE will change so profoundly your head will want to explode.

The medical record thing... I hated it at first, but Wear Bear nailed it... They NEED to know how best to help you. If its coded in there they know you are different than a normal patient (or NT), that alone speaks volumes.

I hated my DX at first, because I wasn't seeking a dx for autism at all, (I was freaking out and having panic attacks and shutting down on people). I didn't even know what "shutting down" meant...

At first, I was angry and I'm not an angry person at any level. BUT I have struggled so hard all my life to have this hit me in the face, at one of the worst times in my life.

Later I grew into it, accepted it, and now I embrace it... Its who I am, and now I understand why I cant be like other people... Though they mostly will never get that...

Thas why I came here... These people GET ME (or at least try too).

Good luck on your new adventures... : )

 

[Steve0001]

T

You're on the right course. I was in my 50's when diagnosed. For me, the diagnosis explained many things and helped me making some changes in my life so I could better navigate the NT world. There are some really great folks here of all ages from all over the world, so feel free to pick some brains and make some new friends. In the mean time:

View attachment 41832​

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You're on the right course. I was in my 50's when diagnosed. For me, the diagnosis explained many things and helped me making some changes in my life so I could better navigate the NT world. There are some really great folks here of all ages from all over the world, so feel free to pick some brains and make some new friends. In the mean time:

View attachment 41832​

Thanks for the welcome. I look forward to making some new friends as this has always been a challenge. Life changes are definitely on the cards and the understanding that has come through the diagnosis will surely help.

 

[Steve0001]

Welcome Steve!

I'm in the same boat - 51 and just realising this might be why I've always felt 'different' and had many challenges others don't seem to have. I am going to get a private diagnosis as I want to feel certain, but don't think I need health services support. I very much 'want to know', it feels liberating, almost exciting. There's a lot of info out there to explore.

Feel free to chat with us as you go through your journey.

Thanks for the welcome. I understand the "need to know", it's something that has been gnawing at me for a long time.

Three and a half years ago I was admitted to the Priory and treated in the same way they treat potential suicides, addicts and alcoholics. No disrespect to my fellow patients, some of whom I developed friendships with and all of whom I have great sympathy for. The drugs and so called therapy made me even worse and I had to dig very deeply to get out of that particular hole.

I hurt the person most dear to me because of my obsession with "needing to know" what had happened to me and how I could prevent it from happening again. Three years later and it was was the person I hurt who figured out what was wrong with me and pushed me to self diagnose. An amazing woman!!!

As you say, it does feel liberating, just having an explanation seems to be a cure in itself.

 

[Steve0001]

I self-diagnosed and sought the formal diagnosis later, because:

• I thought it would give me some work protections - wrong about that!
• I thought it would be covered under insurance - wrong about that!
• I thought I could then get professional help with my condition - wrong about that!
• I wanted to know if my own assessment was correct - and it was.
• If I was going to tell people I wanted it to be "official" in case of skepticism or challenge.
• Since I'm in IT, I figured such a diagnosis would be something better understood and accepted than in some other careers - and that was correct.

I only told my boss at the time because his background is IT and I was sure I wasn't his "first rodeo." Sure enough, he was understanding, kind, and supportive. I haven't told my new boss, because she comes from a different background, and prejudice is rampant out there.

I only told the first boss because I had been taking lots of sick leave: I wanted to tell him why, lest I look like a slacker. For my new boss, I got my doctor to write a medical note referring to a "potentially serious chronic condition" (which I am currently managing, medically, by myself because once again, modern medicine is useless about this) and this allowed me to, without disclosing any specifics about my condition, negotiate two days a week to work at home to help mitigate my challenges.

I went through what is now seven years and counting of dealing with my Asperger's and only figured out that was the problem one and a half years ago. So my energy was depleted and my immune system affected by the constant stress, and I'm still climbing out of the pit. So I have an actual health challenge that has manifested in physical symptoms enough that my family doctor (an absolute gem and the only reason I didn't lose it over this ordeal) knows the truth and is willing to help. And I wouldn't have that if I hadn't gotten a physical diagnosis and made it part of my medical record.

As a result, when needed, I have referred to my Aspieness as a "recently diagnosed genetic condition which can only be managed, not cured." This can allow you, as it did me, to potentially get help from the NT world without becoming a target for misconceptions and abuse.

Sorry to add up such a daunting picture. But you wanted, and needed, the facts. Also my circumstances are likely different from yours: I live in a remote area and had to drive three hours to get to a proper diagnostic center, likewise there aren't any local mental health professionals qualified to treat my condition.

But considering how much medical science knows about this state, that has considerable upsides, in my opinion. For one, I'm not being told I have to take psychiatric drugs to cope with my anxiety, (I use therapeutic niacin instead,) and my diagnostician was helpful in ascertaining that I am one of the subsets of people with autism for whom they do not work.

Thanks for sharing your experience. You have confirmed what I feared about communicating with my employer. A few years back I was under the care of a psychiatrist who failed to pick up on my AS. I guess like many people, I subconsciously masked my real personality through years of conditioning to be "normal". As I look back now, things make so much more sense.

I hope you manage to climb out of your pit and make it to the top of the mountain!!

 

[Steve0001]

Welcome, @Steve0001!

Soon after I found out (at age 51), I told my boss -- who I thought was my friend. He fired me soon thereafter. Don't tell anyone at work unless you need accommodations. Even then, try to figure it out on your own.

View attachment 41833

Thanks for sharing and for the advice. I had already come to the same conclusion.

 

[Steve0001]

Welcome Steve...

My iffy "theory" is don't tell unless it becomes important. Some people you least suspect will treat you differently. It can hurt to find out peoples true colors, but its also healthy to know. So thats ALWAYS your choice. You are in control now... Once you grasp that your LIFE will change so profoundly your head will want to explode.

The medical record thing... I hated it at first, but Wear Bear nailed it... They NEED to know how best to help you. If its coded in there they know you are different than a normal patient (or NT), that alone speaks volumes.

I hated my DX at first, because I wasn't seeking a dx for autism at all, (I was freaking out and having panic attacks and shutting down on people). I didn't even know what "shutting down" meant...

At first, I was angry and I'm not an angry person at any level. BUT I have struggled so hard all my life to have this hit me in the face, at one of the worst times in my life.

Later I grew into it, accepted it, and now I embrace it... Its who I am, and now I understand why I cant be like other people... Though they mostly will never get that...

Thas why I came here... These people GET ME (or at least try too).

Good luck on your new adventures... : )

Thanks for the welcome and I don't think your theory is iffy at all. I agree that understanding the issue is empowerment in itself and I am really looking forward to improving my LIFE.

Not sure about wanting to wear my new "badge" so openly yet, so I'm going to follow other advice and wait before having a formal diagnosis that will label me with "The Man". I've managed to hold down a high level position for some time now and when I go, I want it to be on my time and on my terms.

I've done the anger thing and the shutting down in the past; this diagnosis has given me the understanding that I always lacked and I must say that I feel excited and a little overwhelmed by the opportunities it opens up, particularly in my private life.

It's good to know that I'm not the only one and I'm sure that over the coming days, weeks, months and even years, sharing and communicating with others who GET ME will help.

Thanks a lot.

 

[Nitro]

 

[LooseEnds]

Keep in touch with your journey - there are a bunch of us on here at the same stage, sharing support. I'm sorry for your pain - it is so frustrating sometimes. And such devastating consequences that just didn't need to happen. Never mind... looking to the future . Wishing you all the best.

 

[Sherlock77]

All I've done so far is online self diagnosis, at the age of 45

I'm fully employed, always have been fully employed so don't see a real reason to make it official, I have had several friends (with some knowledge of Asperger's) tell me that I likely am based on what they know about me.

I've always been slightly eccentric, but also have generally had good acceptance from people around me, I was mostly curious back in May so took the online test.

 

[Steve0001]

And how did you score? Knowing one way or the other seems to be important to most people, myself included. Feeling different and disconnected without understanding why is so frustrating. Having the feeling that no one gets you, but not knowing why. These are issues I’ve struggled with all my life.

I guess we are all at a different point on the spectrum and cope in our own ways.

 

[WereBear]

Some of us put our scores in our signatures. See mine: below.

I was surprised I scored so high because absolutely no one ever mentioned it as a possibility. However, the strain of what turned out to be 24/7/365 Method Acting almost gave me a breakdown. I was High Functioning but the giant bill was coming due.

I read The Journal of Best Practices and went, "Hmmm, I have those same sensory issues." But it didn't occur to me to explore further until a commenter on my cat blog said I was explaining cat behavior the way autism educators explain human behavior... and I'm not an autism educator...