What was your Reaction to your diagnoses?

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Aristophanes
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03 Jun 2014, 5:27 pm

My diagnosis was pretty recent, about three months ago. I was actually diagnosed with ASD (asperger's) about a decade ago but the facility I was at didn't notify me of my diagnosis since it was a court ordered stay and apparently I wasn't really a patient, just a paycheck to them ([sarcasm] thumbs up to the American healthcare system [/sarcasm]). So for about a decade I was just kind of left to rot. So when I found out about my previous diagnosis which had been withheld from me I was actually pretty pissed off for a week or so.

After reading about ASD though, it all kind of clicked for me and over the last three months I've felt much more at peace. I used to be extremely depressed and constantly frustrated-- it's only natural when you try really hard to accomplish something but always have it fall apart due to social ineptitude. I could never understand why I never "fit in" regardless of how hard I tried. The diagnosis allowed me a form of self forgiveness-- I used to believe it was something I could change and now I know it's not.



JoelFan
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03 Jun 2014, 5:32 pm

Let me ask this how many people on here had the wrong diagnoses thrown at you at one time or another.


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XFilesGeek
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03 Jun 2014, 5:54 pm

Excitement mixed with shame.....


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JoelFan
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03 Jun 2014, 6:00 pm

XFilesGeek wrote:
Excitement mixed with shame.....



Why Shame?


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Klowglas
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03 Jun 2014, 7:05 pm

I started smashing things and then I pushed the doctor down to assert my dominance. He rued the day he thought he could redefine my existence!



XFilesGeek
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03 Jun 2014, 7:17 pm

JoelFan wrote:
XFilesGeek wrote:
Excitement mixed with shame.....



Why Shame?


Because I was "impaired."

I didn't want to be "impaired."

But I've made my peace with it.


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League_Girl
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03 Jun 2014, 7:22 pm

I'm not normal and there really is something wrong with me and I was never normal. I really am different was my reaction. I also thought "why me?"


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jetbuilder
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03 Jun 2014, 10:11 pm

My realization that I might be on the spectrum was a lot like what happened with Hank on the show Parenthood.

Someone asked me if I had aspergers. I didn't really know what it was, so I called a friend who knew me very well and who did therapy with autistic kids. She said that she thought for years that I may be on the spectrum.

For the next few weeks. I spent every second of my spare time reading about autism. It was a huge "EUREKA" moment for me. I couldn't believe that I didn't figure all this out a long time ago. There were so many things written by autistic people about dealing with autism that I related to, it felt like I was reading a biography of my life. That was over two years ago, and not a day has gone by since that I haven't spent at least an hour or two on this forum, or reading about autism. It's become one of my long term special interests.

It was one of the most important discoveries of my life. I understand myself so much better now.

I contacted a local autism services organization last week. One of the evaluators emailed me back and said that after reading my self report, she agrees that an evaluation is a good idea for me. They're sending me a bunch of paperwork to fill out as the first step of getting an evaluation and hopefully a diagnosis.


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DevilKisses
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03 Jun 2014, 11:25 pm

I was diagnosed when I was about four, but I think I found out about my diagnosis when I was about eight. When I learned about my diagnosis I thought "This isn't really me, but it sure explains why people treat me funny." For a while I self identified as autistic, but now I think that my eight year old self knew myself better than the professionals did.


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MrGrumpy
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04 Jun 2014, 6:54 am

jetbuilder wrote:
My realization that I might be on the spectrum was a lot like what happened with Hank on the show Parenthood.

Someone asked me if I had aspergers. I didn't really know what it was, so I called a friend who knew me very well and who did therapy with autistic kids. She said that she thought for years that I may be on the spectrum.

For the next few weeks. I spent every second of my spare time reading about autism. It was a huge "EUREKA" moment for me. I couldn't believe that I didn't figure all this out a long time ago. There were so many things written by autistic people about dealing with autism that I related to, it felt like I was reading a biography of my life. That was over two years ago, and not a day has gone by since that I haven't spent at least an hour or two on this forum, or reading about autism. It's become one of my long term special interests.

It was one of the most important discoveries of my life. I understand myself so much better now.

I contacted a local autism services organization last week. One of the evaluators emailed me back and said that after reading my self report, she agrees that an evaluation is a good idea for me. They're sending me a bunch of paperwork to fill out as the first step of getting an evaluation and hopefully a diagnosis.

Jetbuilder - your experience was roughly similar to mine, except that I was in my mid-50s.

If you have read any of my posts, you will know that I am fairly sceptical about the wide variety of approaches to the processes of evaluation and formal diagnosis.

Like you, I had a EUREKA moment, and my GP referred me to the local Mental Health unit. But I was met with a total refusal to even consider the possibility of Asperger's/ADHD, and after a bit more research it became clear that the UK National Health Service has very little interest in dealing with adult autism.

Eventually I decided not to pursue the matter any further - my own research had given me all the answers I needed, and I couldn't really see that I had anything to gain from having my self-diagnosis either confirmed or denied by somebody whose knowledge of the subject was probably not much greater than mine.

I am glad that you have received a positive response from a professional evaluator, and I really hope that you will find the procedure useful. I wish you well.



wblastyn
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04 Jun 2014, 7:21 am

Relief - I finally had an answer as to why I never fit in as a teenager, and why I felt so different from everyone else. My desperate need to fit in disappeared when I realised I never would.

Followed by, "oh god, there really is something wrong with me!". But I think I've gotten over that. While I don't think we're " more evolved" than NTs, I think we do have skills (intense focus, attention to detail) that enable us to be productive members of society, given the right support.

Overall it was definitely a positive experience getting diagnosed and I feel eternally grateful towards the psychologists who did it.



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04 Jun 2014, 12:28 pm

I always knew I was different. Being told by my boss in the late 90's caused denial. Suspicion of it the 2000's was just a mild curiosity. Psychologist with 30 years experience saying to me last summer at age 55 "I have no problem diagnosing you with Aspergers" caused Joy, Relief, and Identity. Getting the diagnostic report a few months later saying I have moderate-severe Aspergers under the DSM IV and Autism Spectrum Disorder under the DSM 5 was humbling because 1. I found out I was not mild 2. My issues were dealt with all at once instead of one at a time like here.

While my life has not changed radically my view of myself has. It is much less negative, and anxious.


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Adamantium
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04 Jun 2014, 1:54 pm

When I first began to research it because of my son's diagnosis, it felt like a huge, amazing thing, something like this:
http://www.youtube.com/watch?v=Z8eKxVCFoUk

But then became a recognition that it is just the way it is.
Like ASPartOfMe, my boss tried to tell me, but I was not capable of perceiving it at that time. Those words came back to me when I began to suspect.
I felt like an idiot, then.
Everything made more sense, seen through this lens, but it is what it is and has always been. Now I have a name for it.



jenisautistic
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04 Jun 2014, 3:02 pm

My reaction was just a wow that fits me reaction :P :D


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04 Jun 2014, 7:48 pm

Finding out: "Why are all these people writing about me?"
Diagnosis: "I told you so."


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04 Jun 2014, 10:22 pm

JoelFan wrote:
Let me ask this how many people on here had the wrong diagnoses thrown at you at one time or another.

I had many misdiagnoses thrown at me. In fact, I was misdiagnosed for 11 years before I finally was diagnosed with Aspergers. I was misdiagnosed with OCD and Oppositional Defiant Disorder. Although I was not exactly misdiagnosed with ADHD, because I do have it, ADHD was my primary diagnosis, which was incorrect. My primary conditions I guess you could say are Aspergers and Generalized Anxiety Disorder. I was also misdiagnosed with a stomach disorder for a number of years that turned out to be under treated anxiety. (I was actually successfully treated with medication for the stomach disorder, but the problem was the conditon did not go away like it was supposed to and they couldn't find anything else wrong with my stomach. Every time I was weaned off the medicine, I would get sick again. There's the placibo affect in action for you.)

As for ZombieBride's original question, there were actually too parts for me. I first read about autism when I was 12 and my reaction then was what I guess you could call wonder and awe. It just fit. What I was reading discribed me. So many of the problems I had matched. I was like, "This is it! This is what I have!" But long story short, no one else agreed with me that I was autistic until I was 17 and I was then diagnosed with AS.

When I received my official diagnosis I felt relieved. Just relief that I finally got the diagnosis that really explained it all, and I could finally start getting the help I really needed.