How important is an official Diagnosis?

[Gobari]

Hello! Where to begin? I'm in my mid forties and about 2 years ago my wife started trying to convince me I had AS. I was not at all receptive to it. 18 months later on the brink of divorce I finally agreed to watch some videos on it. I had to stop watching the video 3 times in the first 15 minutes due to being overwhelmed with a sense of trying to reconcile hearing so much I could identify with the image of who I thought I was. I could not sleep until 2 in the morning as my brain seemed to be taking this notion that I might have AS and re-contextualizing my past experiences. This was a very positive experience for me. For example, growing up in school I was picked on a great deal and had a lot of hurt over it. The world did not feel at all like it was consistent or predictable. With the new context, I was able to see that I didn't know how to act in the norm as a child and in the same respect they didn't know how to deal with me having behaviors outside the norm. Suddenly the world was not so bad and out to get me. I had the thought that I might be able to achieve more reliable and repeatable results in how I interact with the world.

If I am on the spectrum, I believe I would qualify as high functioning. I work in the technology field and have been far more successful than I would have ever anticipated. I have not wanted to do an official diagnosis as my lack of visibility of the process leaves me with concerns about having that diagnosis on my records. I also am unsure about the AS possibility because in some cases I do not experience the same kinds of traits as others commonly seem to. I do fairly well in social situations, I do have some anxiety in social situations, but mostly talking too much about the latest thing I am deeply interested in. I have the impression with what I have read on some traits that I feel my sense of humor and extremely strong emotions sometimes that it doesn't fit.

In the time since I became open to the likelihood, given the information I haven't pursued the issue much other than making the possibility part of my everyday operations. In reading the last few days over some forums I have been again overwhelmed. Hearing people telling what feels like my story. Finding some behaviors and traits I didn't know could be related. Then I get confused about what's me and what's AS. I went and took the AQ50 test and scored 33. I am confused about what to do about diagnosis. I do realize what ever challenges I face they are likely in the ballpark and the chances of my analyzing my way out of this on my own are less than promising and not expedient.

I've had a lot of transitions and changes in my life over the last few months, and I am so far out of my comfort zone and routine that I am trying to be brave and remain there and keep pushing. I have been diagnosed ADHD have some dyslexia etc. Any input is appreciated, especially on the importance of diagnosis. My family doesn't want to entertain the notion I might have it, this makes it very difficult to share the important things going on in my life. I mostly feel like I need the diagnosis for them. Which feels like having to deal with their fear of having their image of me somehow tarnished in their mind.

But to be honest, I feel like I have found my people and I am no longer the odd man out. Happy to answer any questions that may help.

Thanks,
Gobari

 

[Ronin82]

I NEEDED my official Dx because I need to file for Disability and all kinds of benefits programs, but mostly, I needed the validation. My parents still deny I have any problems, but after my assessment its become PAINFULLY obvious that I do indeed have issues that need assistance. Everyone is different as to why they need a Dx, and even if you get one, you don't have to tell your employers or anyone else about it. Its just good info to have, so I don't have to wonder if I'm crazy or making things up. I have a bona fide reason now, and its Asperger's...

 

[midlife aspie]

If you are not in need of services and/or financial assistance, a diagnosis can only influence your peace of mind. As far as family goes, only your wife and children (if you have any) or those who live with you are on the 'need to know' list. I would suggest accepting yourself as an Aspie if it comforts you and have a talk with your wife about how the two of you can work together to reach a better understanding (with Aspergers in mind). This forum is a tremendous resource that both of you can benefit from. This could be a new beginning for you. Good luck.

 

[Evil Genius]

I echo what's been said of it being peace of mind more than anything else. Some of my stress has been relieved just knowing what to attribute certain things to.

 

[DanR]

I was first clued about an Aspergers possibility when I completely failed a college course that should have been very easy for me. I couldn’t figure out what the problem was, so my wife and I went to the campus counselor. He asked a few questions and, after just a few minutes, asked if we’d ever heard of Aspergers.

A lot of soul-searching came next. I asked my wife if it could be true, and she said it was obvious to her.

My problem wasn’t the material; it was with the lecturer’s presentation style. This insight gave me a path out of the bewildering confusion and self-doubt. I took the class again the following semester (without attending the lectures) and passed with no problem.

I did pursue a formal diagnosis later. Partly because I wanted to know for sure and partly because I thought it would help get management on my side at work where someone was, well, I don’t know what he was doing, but I became very uncomfortable and I couldn’t put my finger on it.

I got the diagnosis, but management wouldn't help. I re-wrote my resume, emphasizing my Aspergers strengths and looked for a different job. I got an offer for 65% (no typo – sixty-five percent) more than I was making at that old place (ymmv). I enjoy this work more and it pays a lot better.

Knowing that I am/have Aspergers gave me a lot of personal insight to re-write my resume in more accurate terms, and to know on a daily basis, the boundaries of my strengths and limitations.

My family of origin didn't like the idea one bit (a good friend told me that when you draw boundaries, no one is going to stand up and cheer).

Revealing my diagnosis to my children was very valuable, however. 2 out of 5 grandchildren are diagnosed on the spectrum, and a third goes for testing next month. Revealing my diagnosis helped my children know which direction to look, and now my grandchildren are getting the assistance they need.

 

[Gobari]

Thanks for all the replies, very good input. A lot to think about.

 

[StephF]

I guess it depends on what you want out of your dx. I wanted support and also the ability to claim disability.

At least now I know that I am not faulty, not broken, not useless. I am DIFFERENT.

 

[Gobari]

If I was to imagine what would come out of a DX it would be that I could be confident with, as the joke goes, " Is there a name for what's wrong with you?!?!?!?" I would be able to tell my family of origin that, "This is who I am, get on board, or watch the train leave the station!" When I tell close friends at work my suspicions they say, "No! really? Not you!" Sarcasm in full effect. The fear of my current understanding of the world(the most cogent to date) being threatened by the possibility that I am once again being fed bad data and making decisions based on same, it would be crushing. Today the world makes sense as it never has before, today there are rules to the game, a window to take advantage of said rules. I really don't want to go back. The old understanding of the world did not even allow for the immutability of physics. Yes, I could in no way trust even a tape measure, to deliver accurate, repeatable results when doing remodeling on my house. I am afraid of having to trade my current understanding of things(Feeling locked in like clockwork) vs. start from square one and everyone thinking you're a kook, seems extremely plausible at times!

 

[toothless]

hi gobari, if you feel you are doing well in life and you are able to self assess yourself you dont need a diagnosis,it sounds like you have a good understanding of yourself and you can get support from forums like AC as a self diagnosed autistic without judgement from fellow members,plus some physical support groups do allow for self diagnosed members.

the problem is,some undiagnosed [near/around] mid aged autistics who were doing well in life end up crashing and burning because they never had the support of a diagnosis to back themselves up,they might need to claim disability benefits for example because they are suffering badly with primary or secondary issues around their autism but because they dont have a diagnosis its very unlikely theyll get the benefits.

a down side to being diagnosed-at least in the UK [im not sure what the law is in the USA] is you have to reveal your diagnosis if you get a job-IF you want disability support and some changes in the way you work or if you wanted to be protected from discrimination in the job-such as being sacked for your traits or issues around your autism.
if you can handle life without the need for a label,dont do it, that is what i think anyway.