How Did You React To Being Diagnosed?

[TETSUO]

Well not yet having a full "official" Diagnosis i can only comment up to my current experiances.

For as long as i can remember i have always know that i have not been like everyone else, and at som points even longing to have clarification that i was different... I never understood this,

But as i got older in a way i just forgot about this, and just accepted that i was going quietly mad.

But after my eldest son was born and he received an official diagnosis for aspies, everyone started to point out the similarities between us. And after many months of research and questioning myself, i decided that is should get a diagnosis.

But again i still felt cut off from anyone, and i didnt want to claim i was somthing that i wasnt. But even though my diagnosis has not yet been completed, i have had many specialists in autism tell me that i definatly have a form of ASD i felt a relief that i could finally put a lable on to why i am as i am.

And even with all the bad buts that come with it, In a way i actually find it knid of cool and exciting.

I think of it as everyone else is just a normal factory car, but i have been tuned for somthing much better :H

My ultimate goal is to really understand myself so i can be there for my son when he gets older and this becomes more of an issue for him.

 

[robertwnielsen]

Superboyian and Calvert, maybe I can give some insight into what it was like not being diagnosed.

You feel like your failings socially and in other ways are due to your own weakness. You get told all your life in one way or another that you have failed to live up to your potential - people look at your IQ and wonder why you are not a PHD or a high earning professional. Other guys make sneering remarks about your lack of girlfriends. At work people are happy to take advantage of your special skills, but not so keen to make allowances for the areas that you struggle in.

I am sure that it must vary for everyone. All things considered, in some ways I was better off not being diagnosed because I had to go through life without people making allowances for me and without making allowances for myself.

Then again, if I had been diagnosed then perhaps I would have learned coping strategies and found a path in life that was less painful but which suited my talents better.

142857,

Do I KNOW YOU?? I say that because when I read your post on "How did you react to being diagnosed?" I thought, "That sounds a lot like my life!!" I mean, I can relate to feeling like my social (and other) failings were due to my PDD-NOS....and if I had a dollar for every time I've heard "you haven't lived up to your potential," well, let's just say I could pay off this country's debt (by myself), and still live like a king. XD And, I heard the sneering remarks about lack of girlfriends, too. (Now, of course, I have a smokin' hot wife....the love of my life for the past 16 years.) XD


And, like you, if I'd been diagnosed earlier (I wasn't officially diagnosed until I was 39...and I'll be 41 in November), maybe I could have learned coping strategies and found a path more suited to my "uniqueness." My point is -- our stories are extremely similar.

 

[Geordie]

This question may not apply to me for now ~ but I know some people will say, please, why do I have autism? Denial, acceptance, then trying to cover up

 

[alien girl]

i was sooooo happy and relieved and it was so good for my self esteem. because i knew i was different from others even when i was five or six, if not before and i just dont remember. i grew up in a society that isnt very tolerant and was made to feel like a freak. i didnt understand why i had such lousy motor skills, for instance, or the red, blinding rage and many other things. i kept feeling others could do stuff i couldnt, i saw even people with low intelligence level succeeding in things i couldnt do. i didnt feel what others feel, like the need to communicate and be surrounded by people, and i thought that's supposed to make you happy and it didnt make me happy.
i'm glad to have an understanding of what's going on. finally i realize i'm not stupid. my self esteem was almost non existent.

 

[IContainMultitudes]

I didn't get diagnosed until I was almost 31, and I was rather glad to finally have a name to put to the thing that always made me a bit different (I've also had a few practical benefits from getting a diagnosis, particularly help in finding employment). Of course, the fact that I had to actively seek it out rather than having it imposed on me probably made a difference (when I was younger, I was diagnosed with ADD and maybe one or two other things, and I never really liked being labelled that way).

I think I actually would have been rather disappointed if I were told that I did not have AS and that I was completely "normal."

 

[kg4fxg]

Do you have the diagnosis in writing?

I guess what I mean is do you have anything to prove it? I have seen many doctors since 1st grade and I have been diagnosed as Schizophrenic, Bi-Polar, OCD, but never anything on the autism spectrum. My wife talk middle school kids with Aspergers and did her Specialist degree in it. It fits and as for the on-line tests I fail at these diagnosis but score real high with Aspergers. But the other diagnosis might do me more good, albeit they are wrong. No one diagnosed Aspergers back in 1968.

B

 

[King_Oni]

I haven't gotten my diagnosis until recently (january 2012). I suspected I was on the spectrum though. I never expressed that idea to my current therapist however.

I actually was "happy" and relieved to know I was on the spectrum. The reason being; Yes, I am a quirky individual and therefore, yes I stumble upon a lot of things which others might find easy or normal. The fact that my mind is differently wired, does account for something.

Also, the fact that I actually need to have something on paper/official does make it easier in the long run to get support where and if I need it. And with my history some support or services might be in place. I never finished college or uni, I do have a problem keeping a job (and not ending up at a therapist cause of said job), my living situation isn't what most people my age would do... it's just a few things that apply to me, and to be honest, there is a big difference to me (as well as to people at job centers) when they are aware of reasons why you are like you are.

One of the therapists in the past told me "see if you can get a diagnosis and file for disability... cause by this rate and your situation with unemployment beneifts for you right now, you're only gonna be in a lot of trouble over the next few years up to the point where they might cut you off because they think you're just lazy and annoying instead of well.. being just you". So I took his advice and therefore I'm kinda happy that worked out well.

As for having it official on paper. I don't have a file of myself at home, but my GP knows about it in my medical file. So if anything I can direct a job center to him and he'll probably know what kind of information he is allowed to give them. However I asked my therapist for a copy of the report she wrote about me, and I have yet to hear from that.

Over the past year I was on my way to being labeled as having a personality disorder. That quickly changed to autism through a different therapist because for what it's worth to her it was just my personality that might throw people off and not neccesarily a hardwired thing in my brain that makes up for a disorder. One of the things a therapist in the past told me is that he wanted to label me with narcisistic personality disorder because I apparently lack some major empathy stuff. That apparently can also be seen as autism. And combining all the things together that might fit to a single ASD diagnosis a lot more than having 5 partial comorbid things.

But the other diagnosis might do me more good, albeit they are wrong. No one diagnosed Aspergers back in 1968.

Of course not... from what I know; it hasn't been in any official documents as of DSM IV in 1994. Before that it just got filed under ASD

 

[Cosmic Light]

I just mentioned a tiny bit of this in my intro post, but I'll go into it a bit more here. I got my diagnosis recently and already into my adult years. (yep, another one of those late diagnosis cases.) My situation is a bit odd in that I'm quite certain the first school I went to way back in my grade one or kindergarten years made some sort of diagnosis early. But I never knew. No one ever said a thing. I never saw my school record. (I'm actually looking into obtaining a copy for myself.) The thing is though, I was happy enough to have my diagnosis. I suspected as much anyway and it just made so much make more sense.

 

[y2marmar]

My first reaction was denial. I'd never heard of it. So I denied it, then researched it a little and realised that all of the symptoms fit me

 

[robertwnielsen]

y2marmar,

I can relate to your feelings of denial -- I had an employment counselor ask if I'd ever been tested for autism, and my first thought was, Autism?? ME??? Then I started researching Asperger's Syndrome and realized that was what I had....until my diagnosis of PDD-NOS came down in 2009. I don't "fit the profile" of Asperger's Syndrome (but, isn't profiling wrong??) But I have learned to accept the diagnosis.

 

[Bay]

I am still not officially diagnosed by a diagnostician, but I am self-diagnosed and have been told by a Psychologist that I see regularly for therapy that he believes that I have AS. I am scheduled to begin testing in a few weeks. I am 54.

Like many of you I always felt different. Never made friends easily (if at all), bullied in school, behaved oddly, etc. Other kids often stole my toys, because I trusted everyone to be as honest as me. I learned to read books easily, however, and was always in the advanced reading groups in the early grades. My school troubles began in 3rd grade. I lived in Salt Lake City, Utah. It was around 1967, and the Mormon Church held sway over everything in public life, including the schools. My teacher separated the non-Mormon kids from the rest of the class (about 5 of us), moving us to the far end of the classroom, with an extra-wide gap between our row and the rest of the class. We were largely ignored.

I remember hating the teacher, and thought her very mean. She taught us to write in cursive, which I refused to do. My handwriting was appalling, and her teaching style consisted of negative reinforcement through criticism. I was sent to a Child Psychologist, who lectured my parents for raising me in a non-Mormon household and diagnosed me with ADD (only in those early days of ADD research, I was called "hyperkinetic"). In those days, hardly anyone knew about ADD or ADHD, so I must have been a strikingly different child to have even earned such a diagnosis. I was put on Ritalin and held back a year in school, and had to repeat 2nd grade. I was mortified about that for years.

My mother died just after I turned 11, and everyone forgot about treating me for ADD. My father remarried, I was sent off to boarding school and only came home for holidays and summer break. I became an angry and rebellious teenage girl, who excelled in humanities but flunked out of algebra. And I was still an outcast. Eventually I graduated from high school, scoring in the 95th percentile on my SATs in Verbal, and in the 25th percentile in math. I was accepted into college, where I drifted. Through my early 20s I struggled mightily, tried suicide, and was raped while on a date. I believe that it was because I still trusted everyone. But that was the late 70s and early 80s, and I had never heard anyone mention autism.

Some years later (after an unsuccessful adult life, failed relationships and failed jobs), autism began to be written about in newspapers and magazines. Whenever I read about it I had a flash of recognition, it was something I intuitively understood. On some level, I knew that it described me too. But no one would have believed me if I had said anything, so I kept it to myself, thinking it further evidence of my craziness. And crazy was a term that fit. I had been diagnosed with Depression, and have taken antidepressants ever since. They may have kept me alive, actually.

Over the last couple of years I have come across more and more about AS, and everything I have read describes my life. It did not take too long for me to diagnose myself, once I really started paying attention. The realization has turned my world upside down. I am not who I thought I was at all. It is bizarre to be faced with knowing myself, truly, for the first time in my life, at my age. While it is an enormous relief to know that the problems in my life have not been a result of deep character flaws, I find I do not really know who I actually am. It's hard to explain.

 

[Galaxy Freeze]

I was diagnosed during the summer after 9th grade.

First, I didn't know what Asperger's was, and I didn't have a lot of knowledge of Autism, but my mom and I talked about it after I had an anger meltdown (Guess that's what it was!), I instantly researched it the next day.
I was all, "Oh gosh, this is totally me!!! Why didn't I know about this eariler?!"

After finding out what it actually was, I was very relieved. We thought it was Depression for a while because my dad has it and it might've been passed down, but nope. It's Asperger's, and I am glad to know why I was so... Different from all those other girls.
We ordered a book called "Aspergirls" by Rudy Simone and it gave me tons of information, I could relate to almost all of it. I've got about 95% of the symptoms!

But yeah, I'll say it was nice knowing something was going on. I knew something was wrong (and so did my parents), I just didn't know what it was until then.

 

[Arashi222]

I reacted well. I was relieved because my mom had always suspected that I might have Asperger's after high school though no one thought to get me tested until my internship in grad school when my supervisor suggested they do it because I was displaying a lot of symptoms while with clients (I went to school for Masters of social work) so it was nice to know that my issues were from AS:cute:.

 

[westrain]

I was relived to get the diagnoses.

 

[alien girl]

when i was "diagnosed" by a fellow aspie at work, i went home and looked it up on the internet and did two tests. they both said i'm very likely to be an aspie and my score highrocketed.
i dont know if that means i was being diagnosed because it wasnt official and professional. still, i've always known i was different and was ashamed of my stims and thought i was a freak and cold hearted because i didnt care about anyone. and my parents told me i was selfish and anti social and i believed them. so i was sooooooo happy to find out i was an aspie, and then i found more material on the net and this forum and i'm proud of it.
i'm just ticked off because i was told so late, age 45. too late for my self esteem. i was so ashamed of having problems lighting matches, as if i was a little girl.

 

[ravendragonwing]

Diagnosed at 37, it was such a relief to know I was not descending into madness, but that I had a reason for being unsuccessful at keeping jobs and friends, why I am so angry, why I am depressed, etc. Before I was diagnosed, I actually believed I would end up in a mental institute. I didn't know much about AS until a friend of mine (undiagnosed) posted the results from an online test. I love online tests, so I took it and got a high AS score. Did research and everything clicked. Found an autism specialist and got diagnosed. Growing up, I was often bullied, etc (same story as most other girls on the spectrum) and never understood why people would one day be my friend and the next day would hate me. I also got the "you are not trying hard enough" speeches growing up and later as an adult, and I could never (and still cannot) understand why people say that. How do they know how hard I tried? They aren't me.

 

[robertwnielsen]

Diagnosed at 37, it was such a relief to know I was not descending into madness, but that I had a reason for being unsuccessful at keeping jobs and friends, why I am so angry, why I am depressed, etc. Before I was diagnosed, I actually believed I would end up in a mental institute. I didn't know much about AS until a friend of mine (undiagnosed) posted the results from an online test. I love online tests, so I took it and got a high AS score. Did research and everything clicked. Found an autism specialist and got diagnosed. Growing up, I was often bullied, etc (same story as most other girls on the spectrum) and never understood why people would one day be my friend and the next day would hate me. I also got the "you are not trying hard enough" speeches growing up and later as an adult, and I could never (and still cannot) understand why people say that. How do they know how hard I tried? They aren't me.

Your story sounds a lot like mine, ravendragonwing. I mean, when I got my diagnosis, it was like somebody turned a light on in the darkness of my mind...suddenly things made sense--like you, I suddenly understood why my "employment" history is so bad, why I have always had few friends, and why I was depressed and angry all the time. I also got the "you aren't trying hard enough" speeches, although with me they were sometimes augmented to "You're just lazy," and I started to believe that.

 

[Bay]

Diagnosed at 37, it was such a relief to know I was not descending into madness, but that I had a reason for being unsuccessful at keeping jobs and friends, why I am so angry, why I am depressed, etc. Before I was diagnosed, I actually believed I would end up in a mental institute. I didn't know much about AS until a friend of mine (undiagnosed) posted the results from an online test. I love online tests, so I took it and got a high AS score. Did research and everything clicked. Found an autism specialist and got diagnosed. Growing up, I was often bullied, etc (same story as most other girls on the spectrum) and never understood why people would one day be my friend and the next day would hate me. I also got the "you are not trying hard enough" speeches growing up and later as an adult, and I could never (and still cannot) understand why people say that. How do they know how hard I tried? They aren't me.

I just got my diagnosis this morning, but I came to the understanding that I have AS many weeks back. Once I started reading up on it I knew that I finally had an explanation for my life. The process of realization was both exhilarating ("I am not a bad, lazy person after all!") and heartbreaking ("I endured so much pain because of this, while never knowing why!") A flood of memories came to me and it was overwhelming for a few weeks but gradually I seem to have largely come to terms with it. It is nice to know that I can try to honor my true nature now rather than berate myself for not measuring up to the expectations of others, as I have always done.

Now if someone gets angry with me for no reason that I can see, I will hopefully have the good sense to ask why and try to explain myself. I hope that I will be able to go through life a little less bewildered.

I was told today that I am "disabled" enough that I will be eligible for disability support from the state. I'd rather see if the state can give me a job, frankly. Maybe it will help in finding a job.

 

[King_Oni]

I was told today that I am "disabled" enough that I will be eligible for disability support from the state. I'd rather see if the state can give me a job, frankly. Maybe it will help in finding a job.

In general, yes that's how I like to view it.

But... and that's the big but, at least in The Netherlands... it's either this or that. If I state that I want a job (and get one), then I don't qualify as disabled enough to get disability benefits and as such end up on unemployment benefits (and the stress that comes with it).

So in that way, lots of people here, who claim disability, just do not go look for a job, because that'll severely mess up their financial situation. With that, if I look for a job and land one, and subsequently get fired from one, I'm being told "well... you had a job, so you can work... you're not qualified for disability anymore". In best case you get a certain percentage of disability and the rest from unemployment. The concept of "I had a job, and that suited me well for a dozen of factors" doesn't make sense to them. It's some silly bureaucracy going on.

So quite often, looking at people I know who get disability benefits, they actually have to act like they do not have a clue where they are, what day it is, and act totally space out, just to get their issue across. If laws are that black and white, people will act black and white as well I suppose.

 

[Kelly]

I just got my diagnosis this morning, but I came to the understanding that I have AS many weeks back. Once I started reading up on it I knew that I finally had an explanation for my life. The process of realization was both exhilarating ("I am not a bad, lazy person after all!") and heartbreaking ("I endured so much pain because of this, while never knowing why!") A flood of memories came to me and it was overwhelming for a few weeks but gradually I seem to have largely come to terms with it. It is nice to know that I can try to honor my true nature now rather than berate myself for not measuring up to the expectations of others, as I have always done.

Congratulations on getting your diagnosis Bay You've also pretty much summed up how I felt, except rather then weeks I'd been wondering if it was Asperger's for years but only really took the decision to go for diagnosis late last year.

I was so worried that the clinic would say I don't have Asperger's because then where did that leave me so on the whole it was a relief, as bay perfectly described it; it was both exhilarating and heartbreaking.

I finally got the diagnosis letter / report through yesterday and it was interesting to read and apparently that specific clinics criteria is more stringent then anywhere else. According to the report the DSM-IV require patients to have 2 or more symptoms from section A and 1 or more from section B as well as meeting the prerequisite conditions in sections F-I wheras CLASS(the clinic I went to) requires at least 3 symptoms to be present from sections A-C and at least 1 from section D and ALL 5 prerequisites must be met.