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Novembers_Moon
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20 Jul 2014, 1:13 am

I was diagnosed at almost 30. I still feel I am more Autism than Asperger's though.



Kiriae
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20 Jul 2014, 7:50 am

People reactions:

A classmate that I am kinda friends with:
me (after doing something stupid): - That because I got Asperger.
he: Ohh...
me: You know what it is?
he: <nods>
me: Ok...
After that we never got back to the topic. But since then I feel kinda comfortable displaying traits when he is around and he seems willing to help me (for example he helps me understand teacher orders when I am about to shutdown because of information overload).

My best friend from high school times, after reading a website about Asperger I sent her link to and said I'm assuming I have it:
- Well. It sounds kinda like you but I don't think you got it. You are alright, don't worry.
(As if I was worried... I was happy, not worried.)
I will have to talk to her about it again. Now, when I got officially diagnosed.

My grandma (before diagnosis):
me: Do you think I have Asperger?
she: Don't you think so?
me: <shrugs>
she: I'm sure you do.
me: Why do you think so?
she: <starts speaking about what I was doing as a child and how I was different than all other children>

My grandma (after diagnosis):
- I knew it!
Now she is babling about my Asperger during family and friend meetings and compares me to Lisbeth Salander. I'm not too happy with it. If I wanted everyone to know I would say it out myself. And I am not like Lisbeth Salander in my opinion.
Fortunately I have ability to not care about what people think of me. I don't even recognize half of the people due to my prosopagnosia so why should I?

My mom (before diagnosis, after I told her what Asperger is):
- <explains social rules to me as if I was 2 year old child and tells my dad I can't help my behavior>
At least she tries to help. But she just doesn't get how it is to have Asperger as an adult and she seem to think I am retarded and Asperger is an excuse of anything I do. That won't work.

My mom (after diagnosis):
- So? Are you going to get any benefits from it?
She still seem to be willing to help. But she got a lot to learn. She is going with me to a strategy meeting soon so perhaps the therapist will teach her what to do.

My dad (before diagnosis, after dad got angry with me):
mom: She can't help it, she got Asperger.
dad: If she has Asperger so do I!
me: You might do. It is in your genes.
dad: Shut up. Don't dare to insult me you spoiled brat.
(or something like that)
He refused to believe. And while he is more like BPD than AS he definitely got AS traits. And his sister is autistic.

My dad (right after diagnosis, he picked me up from there):
dad: So? What did they say?
me: I got Asperger.
dad: I wonder how they were able to say it. They just said whatever you wanted to hear. Just like all those quacks do.
me: I showed them the 20 pages self-description essay I wrote. They couldn't disagree.
dad: You could just download it from the Internet and show it to them as your own.
me: But I didn't do that.
dad: <silence>
After that he had some talk with my mom about it and he seem to be getting with the idea now. But we don't talk about it and I don't mention my Asperger to him. In fact I don't talk to him too much, I never did.

A guy that likes me:
me: We could try but don't expect too much from me, I got Asperger, I'm not good with relationships.
he: Whats that?
me: <special interest mode turn on, starts babling about traits>
he: I got some of those too.
I don't know if he is autistic or not (he deny it in himself, and he doesn't seem to have sensory issues) but after I known him for some time I see he really got a lot of the traits (special interests, social awkwardness, literal thinking). But he is less egocentric/more empathic than me and while I usually choose to act my own way when I have no idea what I am supposed to do he chooses to hold back and wait for others to act first before he makes his move. It might be different copy mechanism.



IHeartDrSeuss
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20 Jul 2014, 7:54 am

I finally have a...thing from my psychiatrist along the lines of "has the triad of impairments with sensory issues but no diagnosis due to lack of developmental history". I don't even know what to call that. When it was first suggested I be tested, I'd been suspected of having ADHD for three years and I've been working with kids with severe autism for a couple of years. My first thought was "no way, won't I know it if I had it?" then as I observed and tried to stop being so danged literal, I realized that my kids and I were quite alike in some ways and my original reason for working with kids who have autism was that the environment was more structured and less social, which made me more comfortable. Also, I have this eerie knack and hyper focus on breaking down skills for teaching into a way which made sense to my kids.

Reactions-wise, my closest friend told me "of course you are, even I can see it." My parents are in deep, deep denial. when i attempted to ask if they would help with giving a develoomental history, they insisted that my grandparents raised me until i was 6 and theyre dead now so no one remembers when i walked or talked. They keep saying stuff like "you never made friends, but that's normal" or "when we moved houses, you cried for months, but all kids cry", "you never talked much to us, but thats normal for kids". Occasionally my dad would tell me "yeah, you're a bit weird but if you weren't you'd never have discovered a job you love". I dont know what to make of that.



FracturedRocket
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26 Jul 2014, 1:42 pm

I guess I've been fortunate not to have had anyone else blurt out any responses like all of that. My main problem is coming to grips with the diagnosis myself. I'm all, "There's no way I have Asperger's, is there?"

I"m rhe one who needs to accept my Aspie-ness, not anyone else. :(



Cherryboo
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03 Aug 2014, 3:31 am

I had a mixture of
'Oh I would never have known'
'But you can make eye contact?'
'Oh sorry to hear that' (then me: oh it's good news it explains so much, then 'I guess it's like when I found out I'm dyslexic')
'Oh cool! Yeh that makes sense. Is that why you hate when I talk loud?' (Sister)
'Ive got a DVD of Adam it's really good do you want to borrow it?'

The most difficult thing for me though is what happens next - how to let the facade down a bit and not have people think I'm just 'acting autistic' to match the dx and not because its more comfortable and now I don't feel such pressure to pretend... I still feel that pressure since no one knows the details of how my being autistic is for me personally - ie. not fitting the google version. Self re-discovery can't happen just in my head... I guess it's a bit by bit process...



SparklyJacket
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04 Aug 2014, 4:11 am

A couple of people made comments like 'I thought that only boys got that' but I don't ever remember anyone telling me that they'd never have guessed which perhaps suggested to me that the very few people I would call friends perhaps knew that I wasn't quite like a lot of other people they knew. There was one friend I'd told who actually provides me with a lot of support via email who told me that she had suspected it but then again she was a Psychologist and Counsellor at one point before her retirement. When I told her she told me that she was pleased that I'd found out the answers to so many questions I'd had about the way I was for so long and now I'd got that, we could look at learning to accept myself as I was.



Angeniniabi
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06 Aug 2014, 1:56 pm

All a diagnosis means to me is that I understand myself, why I don't fit in and how can it be of value. I don't think anyone else necessarily needs to know. I might tell my mom at some stage when she asks about my daughter (who has ASD) but even so it is not meant to serve as an excuse for acting weird when I need to keep it together. I worked in Psychiatry for 3 years. The general population don't get these things, be careful who you tell. It can backfire and you can end up feeling more of and outsider than before. In my work it will not make life easier for me. I might tell a few of my friends who I think can understand. That being said, I might also blurt it out inappropriately and wonder why the hell did I have to be say that today, should I become involved in a closely related conversation.

What I'm trying to say is finally I get me, that is more than enough. There are very few other who will also benefit by knowing this. I hope that I can help my daughter function with what I have learnt. Medicine and science offers very little assistance. I am grateful for my own experiences. I hope I can make the load a bit lighter for my own daughter in the years to come.



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08 Aug 2014, 12:12 am

bethmc wrote:
Yes, but the response that irritates me is when they decide the diagnosis is wrong - that there's no way I'm on the spectrum.

I can't decide what this response stems from:
their inability to accept my diagnosis,
their insecurity with the diagnosis,
their incomprehension of what being Autistic means,
or something else entirely.

But yes, I have gotten the "I would have never guessed" response.
To which I often want to respond, "Whoop-dee-doo - do you want a prize or something?"

But I don't, because I have trained myself to "act appropriately" for so many years.
It's exhausting.
Actually, the NT world is exhausting, because it is so completely intolerant.


I get that too. I think it stems from what people THINK autism and ASD is, and all they have to go by are "idiot savants", the film Rain Man and stories of kids who wear helmets and bang their heads on the walls. They aren't aware of all the ways ASD can manifest. As if gets more well-known, I think that will change.


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Riikka
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08 Aug 2014, 5:20 pm

Hi everyone!

It?s interesting how differently people have reacted to your diagnoses. I once brought up the possibility that I might have Asperger?s to my father and older brother and asked them (stupid me) whether they thought I displayed any of the traits and whether they thought I should seek a professional opinion on whether I was likely to be on the spectrum or not. And the replies were similar to Kiriae?s dad?s, very dismissive and somewhat condescending i.e. ?you?d just act like it and they?d hand you a diagnosis? and ?if you have it then we all have it, we all have our little quirks? and ?your social skills just are a little different, you just haven?t found the right kind of people yet?. :(

I have considered getting diagnosed and simply not telling my family about it, but somehow I feel like if I can?t tell them then I can?t really tell anyone else. I?m not sure why I feel like this, maybe because I think that if they don?t believe it or acknowledge it then nobody else will? I don?t know. But it?s frustrating because I don?t want my father to just dismiss it or call me an attention seeker, but at the same time these are the people I?m closest to and whose opinions matter most to me, so I would ideally like to be able to talk to them about this and the problems I?m having. Have any of you experienced any positive changes in how your families have dealt with your diagnoses as time has passed or do they just stay in perpetual denial and refuse to acknowledge it or talk about it?



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10 Aug 2014, 5:31 pm

Riikka wrote:
Have any of you experienced any positive changes in how your families have dealt with your diagnoses as time has passed or do they just stay in perpetual denial and refuse to acknowledge it or talk about it?

Not to be a downer, but this is in part because I was nearly 31 when the dx was suggested to me by the shrink:
My mother had been dead a few years already by then, and my father died a few years after I got my dx,
so there wasn't much opportunity for things to improve with them based on the new information/understanding.

At least I've had a decade to absorb and interpret how the challenges of ASD relate to my previously mysterious quirks and difficulties.
I'm in contact with only one family member, my aunt-she seems to accept my Asperger diagnosis...
though on the other hand, she-being dx'd with chronic Lyme-thinks that everyone else's problem is also caused by Lyme disease.

I'm fortunate in that I now have a team of mental health professionals who believe in my dx and actually seem to like me as an individual.
Relieved to at last feel taken seriously, and to have a term/name for my confusing clinical picture,
instead of having to try to prove that my problem is not this that or the other.


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15 Aug 2014, 4:08 am

I was diagnosed as a child after my mother took me for assessment. However when I told her awhile ago that I had just gone through a re-assessment for work purposes, she decided that it was all lies and couldn't possibly be true. I guess this is why I talk to her every few years at best.

My dad was never told by my mother about my diagnosis as a child and when I told him this year, he said he wasn't surprised and that he "always knew something was wrong" with me, but he accepted it. When I told his wife, she said it explains a lot.

When I disclosed to my then-best-friend, she decided it couldn't possibly be right because I don't fit her picture of Autism. We aren't best friends anymore, acquaintances at best.

Other people have been like the usual "wow, I would never have guessed", "umm, no you're not, why aren't you like rocking back and forth right now in the foetal position?" but more commonly I get "oh my god that explains everything" or silence and nods of acknowledgement.



mel113
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23 Sep 2014, 12:28 pm

I've had many people tell me that I wasn't on the spectrum because I didnt act like the people they knew with autism. That and I seem to do just fine with making eye contact. Its frustrating....



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23 Sep 2014, 1:24 pm

I was diagnosed at age 45. I had most of my "Odd Behavior" beaten out of me as a kid too. It never really went away, I just learned how to hide it better.

Sometimes I tell people I am autistic and they tell me I seemed normal. My aunt asked me why I needed a label. (I am sure she is, and others in my family are, on the spectrum.) Co workers say "That make sense" or "Who Cares?". I'm glad I finally understand why I could get never seem to get my act together and "Act Normal".


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wifemomartist
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25 Oct 2014, 11:50 am

I'm 28 and just a few months ago i was asked if I'd ever been tested for aspergers. I said no and thought they were way off base.. I'd had a cliche image of aspergers and autism in my head and believed there was no way i could have it and not know it. surprise surprise.. the more research i did, especially with how it presents itself in women, led me to realize that i do have it. (I am currently self-diagnosed but i'm in the process of applying for SSI benefits so im sure i'll have to be evaluated at some point by a "professional" soon.) I've been wanting to tell everyone just so i don't feel like I'm keeping a secret or hiding my real self, but part of me wants to wait, i'm not looking forward to all the comments and doubt. My family has (for the most part) been very accepting and supportive, thankfully.. but i've told a handful of friends and the responses have been mixed. I don't even care if i lose friends, i just don't want to be fake and pretend to be "normal" anymore. I just want to be me. On twitter and tumblr i'm my natural authentic self and i feel so free, yet on facebook among all my family and friends i rarely post anything real anymore. It's like living a double life, sort of. I'm relieved to have finally learned why i am the way i am, though! I've been able to stop bullying myself and putting myself down for never being able to just "snap out of it" and "calm down" and "deal with it". Now i can learn ways to live with it and not try to fight against it.



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08 Nov 2014, 10:13 pm

I do not really have friends in real life, per se, but those who knew me in my teens, as in from ages 11-17, were not surprised at all when I approached them some years ago to tell them I suspected I had Aspergers. It seems they had had a discussion about me as adults and concluded I had it (several of them were in the health profession and had a kid with As). It almost felt like I was the last to know.


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PhoenixRising
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10 Nov 2014, 1:10 am

No