How did you react to your diagnosis?

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I'm mostly asking those who have been diagnosed by a professional, but the experiences of the self-diagnosed would be valuable too.

* How old were you when you were first diagnosed?
* Did you suspect something was wrong with you before you were diagnosed?
* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?
* How do you feel now about your diagnosis? Have your feelings changed over time?
* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?

Im asking because I'm still unsure about how I feel about getting a diagnosis of aspergers. I wasn't expecting it at all, and it kind of knocked me a bit. I have personality disorders, and have been in active specialist treatment for them for a year, and in more general mental health services for depression and anxiety for ten years.

Last week, my case manager said that he thought my depression began far too young for it to have been the result of life experiences, and started asking questions about my language development and whether I collected things as a child. He said that in his opinion I've been "misunderstood my entire life" and that he thinks there's been "something about me since I was born". I started laughing, which took him aback a little. When he asked me what I was laughing about, I confronted him by saying "you're about to say the word 'aspergers', aren't you?" He looked surprised and admitted that was indeed what he had been thinking.

I don't think he really understood why I was laughing though, even though I told him. It's because aspergers is the "trendy Internet diagnosis of the month". Last year all the cool kids claimed they had bipolar, and the year before that it was depression. Next year it'll probably be schizophrenia. Or maybe dissasociative identity disorder. That'll be fun - all the myspace kids claiming to have extra personalities.

He suggested that I look aspergers up on the Internet and decide for myself whether I have it. (That in itself makes me laugh. Cyberchondria is one of my current fixations. I spend hours looking up the criteria for pretty much everything and deciding who in my family has what disorders. And my head-shrinker is actively encouraging me to do this???) I came across this website through a Google search.

The "you might be an aspie if..." thread was a real shock. I read all 88 pages in one go without stopping. I just couldn't believe it. How are you people reading my mind? So many things there resonated with me so much.Even many of the childhood ones - it brought back so many of the things I'd completely forgotten about. How the doctor worried for months whether I was deaf because I never turned round when Mum called my name, and they eventually decided that I merely had intense concentration and was "bloody-minded". How I used to wake up at the crack of dawn so that I could have the entire house to myself for hours and watch cartoons by myself. How I taught myself to read two years earlier than normal, and spent hours reading non-fiction history books for fun. It all explains so much.

Last edited by talitha_kumi on 18 Oct 2007, 9:21 am, edited 1 time in total.

1 How old were you when you were first diagnosed?
42 - last February. My assessment was done at CLASS/ARC in Cambridge

2 Did you suspect something was wrong with you before you were diagnosed?
Years of unidentified depression and anxiety. Always been a bit different but didn't realise until the last few months quite how odd I am!

3 Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
Had therapy in the past for depression etc, but I went specifically for ASD diagnosis after reading up on it.

4 Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
Friends a year ago - the first time they met me they knew I was Aspie even though I didn't. I knew it was 'something to do with autism', but nothing more than that.

5 If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?
Curious/fascinated. I think my mother was more shocked than I was!

6 How do you feel now about your diagnosis? Have your feelings changed over time?
I'm proud to be AS.

7 Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?
Only undefined depression.

* How old were you when you were first diagnosed?
19

* Did you suspect something was wrong with you before you were diagnosed?
Yes ever since I was about 3, they tested me for fragile x syndrome 3 times, determined that it was some sort of mental retardation, considering autism wasn't really known back then.

* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
I thought I had aspergers, so did my mother, after consulting with many doctors they said I was more severe then Aspergers, and at first got the diagnosis of pdd-nos, and then a couple years later got rediagnosed with HFA.

* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
Everybody suspected something, but my mother was the first who mentioned it, later after being brought up, my neurologist confirmed it, along with 3 other doctors.

* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?
Relieved, that I finally figured out what was wrong with me, my whole entire life, and alittle scared because of how the doctors were saying I'll probably will never be able to function in a normal society, yet proved them wrong!

* How do you feel now about your diagnosis? Have your feelings changed over time?
I'm glad I got diagnosed, gave a big insight into my future and my past. At first I was alittle confused and worried, but now after learning more and more, I'm finding that no matter what, I'll always have autism apart of my life, and I just have to accept it.

* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well? I was diagnosed with mild form or tourettes syndrome also.

I was 35 (40 now), diagnosed by Simon Baron-Cohen at CLASS in Cambridge. Knew something was wrong - I had years of depression, my life was a disaster zone. I came across the CLASS 10 point check list on the net - It was probably the biggest shock of my life. Took the news badly, only just getting my head around it, BUT! wouldn't have it any other way. We are this world's last best hope. Don't let anyone tell you you're ill, disordered or f*cked up. "aspergers is not a disease!"

They sort of didn't officially say if House has it, but to me he does fit, at least my understanding of it. I can relate to him a lot (except I'm not a gigantic bastard, but ya know )

I'm answering these although I haven't been professionally diagnosed yet. I'm going in next month, and it's someone who's trained as a consoler, who has a grandson with AS whose father is a psychiatrist who came to think I may/probably/do have it.



Absolutely-I've always felt different, always felt like I had trouble fitting in, like it was easier for everyone else, like I was missing the instruction manual everyone else got.



Well, my unofficial diagnosis came from me talking to this person about various problems.



This consoler type person. I had never heard of it prior to that.



Really surprised and relieved. It was really bizarre hearing I might have a form of AUTISM. I'd sure never suspected that. Relieved because maybe there's a REASON I'm the way I am, and I'm not just a freak. I partially want the diagnosis officially just for that reason. (I wonder if maybe I am just a freak every time I find out something about AS that doesn't fit me-like how I have a really good sense of humor, and aren't uncoordinated, and never really collected stuff to what I would consider an unusual extent).



Sort of. I've got OCD or OCD sympotoms, and hypothyroidism. I was depressed when I was younger, but there were tons of great reasons for that. I also have some kind of social fear/avoidance/something.

How old were you when you were first diagnosed?

17, unoffically (A councellor I was sent to thought I had it) 18 officially (by a qualified psychologist who specializes in Autism/Asperger's)

Did you suspect something was wrong with you before you were diagnosed?

Yes. I've known since I was only young that I had some kind of problem, especially with social things. Everyone just thought I was "naive" and that I'd grow out of it, so I just assumed so too, but I never did grow out of it, it only got worse.

Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?

I got help specifically for the Asperger's, because the AS is one of the causes of my social phobia. My doctors wouldn't believe I had anything wrong with me so I had to pay for the diagnosis out of my own pocket, which, althoug not too much, still frustrated me because I should have been allowed to get it on the NHS had the doctos been open minded enough to believe me.

Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?

I did, hence why the doctor's didn't believe me.

If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?

I was very relieved because I finally knew why I was so different and why I had so many social problems. It's nice to know that I'm not just some stupid loser with terrible social skills. At the same time though, for a few weeks, I was a little upset. It can be a bit of a shock to learn you have some kind of disorder, even if you already suspected it.


How do you feel now about your diagnosis? Have your feelings changed over time?

I feel much happier about my diagnosis now because I'm finally getting the help I need.

Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?

I also have social phobia.

* How old were you when you were first diagnosed?

First time unofficially during childhood. Twice officially during my early twenties.


* Did you suspect something was wrong with you before you were diagnosed?

Yes. Hence one of the reasons why I went to see psychologists - I wanted to find out what exactly was wrong. Most people knowing me well expected it would be a form of autism though because the symptomes were rather clear.


* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?


Both. First diagnosis was done by a general psychologist. Diagnosis was later confirmed by an AS specialist.


* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?

Parents and psychologist. I am not sure because I was too young to remember.


* If you were old enough to understand what that meant, how did you react? Were you surprised?
Relieved? Scared? Pessimistic?


when I was young (first unofficial diagnosis): cannot remember as I was REALLY young

when I got officially diagnosed being an adult: mainly felt relieved because I finally got an answer to my questions and could finally seek the correct help I needed. I was never ashamed about it, because I don't consider Aspies to have a true disability of some sort.

* How do you feel now about your diagnosis? Have your feelings changed over time?

No. Still relieved of knowing the truth. And in a weird way maybe even proud of being an Aspie. Guess I fully accepted myself the way I am, including the AS.


* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?

OCD, anxiety disorder, depression

* How old were you when you were first diagnosed?
* Did you suspect something was wrong with you before you were diagnosed?
* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?
* How do you feel now about your diagnosis? Have your feelings changed over time?
* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?


*I was 12.
*I knew something was different about me but I didn't know what was wrong with me.
*My speech therapist suspected it when I was 11 and my shrink suspected it too and my psychiatrist diagnosed me with it as a closest match for me.
*I first heard the word from my mother when I was 12
*I feel I might not really have it and might have PDD-NOS or it's possible I might not be on the spectrum at all but my shrink promises me I am on it. I learned to accept the fact I am different than other people and my mind works differently.
I have been diagnosed with an eating disorder, ADD, anxiety, depression, autism when I was a baby, dyspraxia, language processing disorder and sensory ingretion dysfunction.

- I was 14 when I was first diagnosed, although I got a second diagnosis at 22. (I'm 27 right now)

- My parents sought help because they saw I wasn't functioning in the way the average person was. The doctors brought up ASD.

- At first, Asperger to me was just a label some doctor could have made up. It was a justification for getting extra time for my exams that I personally felt guilty about using. For a large part of my life I was in full/partial denial, believing that with more willpower and more work, I'd be able to fit in with others. I'd blame it on myself when that didn't happen. Only the last few years, I've slowly started integrating ASD with my idea of who I am.

- I believe it's a blessing...I tend to be insecure about my own instincts and views and an official diagnosis gave me something solid that got rid of the "maybe it's all in my head"-thing permanently, no matter what mood I am in. As stated in my previous paragraph, my feelings about it most certainly took their merry time to change.

- ASD is the only thing I've been diagnosed with.

My advice would be to take your time letting it sink in and not worry too much about it. Many aspies have difficulty with change and a diagnosis is a huge change.

I hope you don't mind me answering this, about my ADD/HD diagnosis.
Although I find I fit in here, and some of the things I have always done are similar to what Aspies also do, I do not claim the title of being an Aspy.

I always knew I wasn't being seen as the person I am. I knew I was intelligent, but I couldn't function that way outwardly to other people.
I was always told I was a 'rebel', lazy, etc.

It wasn't until I saw a television news show about adults with ADD/HD that I finally heard stories just like mine.
Prior to this, my wife(at the time) who is a pediatrician, used to always joke that if anyone had ADD it was me.
After seeing the show, I finally went to see someone and went through a battery of tests.
This was around the age of 32.

He prescribed me some pills (don't remember what they were, but my wife wasn't impressed), and that was about it.
So I just let the whole thing drop.
Although it was sorta nice to have a 'diagnosis', I wasn't completely comfortable being 'different' and 'unable' to just do things like all the 'normal' people.

Ten years later, lots of university with nothing to show for it all, several jobs later, and an almost wrecked marriage, I finally went to see someone else.
The diagnosis was the same, yet I still wasn't sure I wanted to carry that label around with me.
I finally relented on the medication issue and started out on Ritalin... then Adderall... then Strattera.

I continued to struggle with the diagnosis, eventually accepting it and informing my job about it.
My wife, amazingly, kept treating me as if I wasn't trying to do better.
I would get comments like, "I just don't understand why you don't just write down what you have to do everyday and do it!".

Ummm, I'm forgetting what you were looking for....

Today I am fine believing in the ADD/HD diagnosis although I think they have the terminology incorrect.
I am not taking the meds currently and I am working on strategies to get to work (fewer days when work will call me and ask, "Did you forget you were working today... like... half an hour ago?"), keeping up with school work, trying to get my house organized... no, wait... I am finally accepting that I will NEVER have my house organized. At least like 'normal' folk do. I am almost happy now with my 'organized' piles .

I have no other diagnosis and don't care to have any others (unless they can make me independently wealthy ).
I will just accept that I am different than the average person out there and this does not make me a 'BAD' person anymore.

Last edited by wsmac on 19 Oct 2007, 3:20 am, edited 1 time in total.

* How old were you when you were first diagnosed?
* Did you suspect something was wrong with you before you were diagnosed?
* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?
* How do you feel now about your diagnosis? Have your feelings changed over time?
* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?

-25; autistic disorder or AS depending on who you listen to (I don't meet Gilberg's criteria for AS though as I have no motor difficulty).
-Nope; it took a psychotic episode, a few years of agoraphobia and a holiday at the mental hostel, a few years of CBT and what have you to figure out I've got something "wrong" with me other than OCD/panic disorder (the latter was an erroneous diagnosis).
-I am now; I cannot really say it's worth it once you're an adult (point of no return), and you now know what was "wrong" with you.
-I read a news report about some high school male who had autism; his experience sounded just like mine.
-'I told you so.'
-Somber; knowing that I won't get "better" does that to a conscious.
-I've got pretty much every anxiety disorder too (OCD, PTSD, GAD etcetera).

* How old were you when you were first diagnosed?
It was suspected that I may have had some form of Autism when I was 14, I was officially diagnosed at the age of 15.

* Did you suspect something was wrong with you before you were diagnosed?
I always thought that I was weird and stupid. I didn't think that I had a disorder, but thought that I was as I said before..."weird".
I knew that I found it hard to make friends and at the age of 12 I self diagnosed myself as just being "shy" .

* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
I originally had to see mental health professionals because I was running away from home a lot and self harming. Then they suggested Autism but never told me, only mum. But I stopped seeing them so didn't get the diagnosis until later on in life.

* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
First my psychologist mentioned Autism and then she told mum.

* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?
I was in disbelief for the first few weeks. I was trying to convince myself that I didn't have AS. After those few weeks I began to accept it and be happy with it. Because I knew that I couldn't get rid of it.

* How do you feel now about your diagnosis? Have your feelings changed over time?
Yes my feelings have changed and they change everyday. Somedays I am ok with the fact that I have AS, other days it devistates me and I feel like a failure. But overall, I am ok with the diagnosis.

* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?
I am diagnosed with PTSD and depression also.

* How old were you when you were first diagnosed?

17 (20 now)
* Did you suspect something was wrong with you before you were diagnosed?
Yes I always thought that I was different and that I didn't fit in. The diagnosis of AS made a lot of sense.
* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
Just wanted to really figure out what was going on.

* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
I actually self diagnosed and then told my parents and they had been reading up on it and thought that i had it too so we then went to a doctor just to get a formal diagnosis that could be used for IEP's and the like.
* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?

I was relieved because everything in my life finally made sense and the way that I was finally explainable

* How do you feel now about your diagnosis? Have your feelings changed over time?

I feel happy that I know why I am the way I am

* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?

I have anxiety problems as well as a seizure disorder.

* How old were you when you were first diagnosed?
55.
* Did you suspect something was wrong with you before you were diagnosed?
Yes, for a very long time; always frustrated, easily irritated, conflicts with people at work, etc.
* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
I read through the WP forums and other Aspie sites, thought they all sounded like me, so I requested a psychologist experienced with autism and got diagnosed.
* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
I did.
* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?
Surprised = no, I already suspected as much.
Relieved = immensely; it pretty much explained my whole life.
Scared = yes, didn't know what the rest of my life was going to be like.
Pessimistic = not so much, except that now I knew I was different from everybody else, and I couldn't see how I would ever fit in anywhere.
Also felt a deep sadness that I hadn't known this sooner, as I think it would have made a huge difference in my life. Somebody once asked me if I had to do anything over in my life, what would it be? My answer was, "Pretty much everything..."
* How do you feel now about your diagnosis? Have your feelings changed over time?
I'm glad I found out, because now I have a better idea of who I am. I know more about my strengths, so I can focus on using and developing them whenever I can. I also know more about my weaknesses, so I can be more self-aware and recognize/avoid situations that will stress me. Over time, I would say I have become more comfortable just being me, and the heck with just about everyone else.
* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?
Also diagnosed with a significant level of depression, naturally resulting from the AS. There is very likely some other junk going on in my head that needs fixing, but I'm not much good at multi-tasking.

* How old were you when you were first diagnosed? 15.

* Did you suspect something was wrong with you before you were diagnosed? Oh yes. I always knew I was different and I never felt "right".

* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else? I went to a doctor to get my thyroid checked, but she kept asking me and my mom a bunch of these different questions having to do with my behavior and personality and she said, "I think you have Asperger Syndrome". Two other doctors confirmed it.

* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor? Well, my mom said she thought I acted kind of autistic, but I never heard the term "Asperger's Syndrome" until the doctor brought it up.

* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic? I was really relieved to have a name for the kind of person I am, and that I'm not alone. For a long time after that I felt really self-conscious about it, though.

* How do you feel now about your diagnosis? Have your feelings changed over time? I'm still pretty relieved and happy about it, although I no longer feel self-conscious (sometimes I even forget I have AS).

* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well? Before I was diagnosed with AS I had severe anxiety, depression and obsessive-compulsive disorder. I'm on medication now so they aren't ruining my life anymore, although they still bother me a little sometimes.

* How old were you when you were first diagnosed?

14 years, 6 months

* Did you suspect something was wrong with you before you were diagnosed?
I knew I was wired differently, but I suspect to this day that a lot of it was caused by stuff that happened AFTER my birth... but yes, something in my head made that stuff affect me a certain way.


* Did you seek help specifically for the aspergers, or was the diagnosis a result of consulting the doctor for something else?
My mother dragged me to the adolescent clinic for an AS diagnosis.


* Who first mentioned the words "autism" and "aspergers"? You/parents or the doctor?
My mother! She NEVER shut up about it!


* If you were old enough to understand what that meant, how did you react? Were you surprised? Relieved? Scared? Pessimistic?
I was EMBARRASSED. I did not want ANYONE to know except the people who would envy it, like my drama therapist who said she wished she had it.


* How do you feel now about your diagnosis? Have your feelings changed over time?
I just want to be treated like me. I don't want people to treat me like I'm ignorant. That will make me WORSE. Depressed, anxious, angry. Treat me normally. When I'm stimulated, I'm FINE.


* Is aspergers your "only" (pretty big only, I know) diagnosis, or have you been diagnosed with something else as well?

Depression, and my shrink says that I also have social phobia (which I knew) and Sensory Processing Disorder (which I told him about-- he'd never heard of it), and I probably have ADD too!