How was your diagnosis accepted?

[Pats]

Of course, my siblings and children were the first ones I told of my diagnosis. One of my sons thought for a second then said, "I can see that." My youngest figures she is too from what I've shared with her. My other son relates all too well and figures he probably is too. And my other daughter says, ok it's just what it is. My siblings, on the other hand...……… I realize that it makes them feel like they thought they knew me and all this time they didn't? One of my sisters is a lawyer and she is 11 months older than me so she is who I used to talk for me. My family used to joke and say the reason I didn't learn to talk until I was in second grade was because she talked for me. Anyway, her first response was that it's only a diagnosis if it has prevented you from having a normal life and I worked, raised the kids, etc. Then when I explained that's what high functioning is she asked if there's a medication I can take for it. My one brother just says I am who I am. My oldest sister that I always confided in - when I told her how it explained so many things that I have talked to her about (like feeling in a box and can't move) - it took her a while and verbally she accepts the diagnosis but still when I tell her how something has affected me will not validate me. It's very frustrating. My daughter in law has a nephew who is severely autistic so once I explained the different levels has been very accepting and interested. When I tell her how I see things and compare with how she sees things - it teaches us both something. (I've always wondered how a normal mind works). And I'm able to help her understand things about my son who is more than likely on the spectrum. I was curious about other's experiences.

 

[SusanLR]

I don't have a family, so I don't know how they would have accepted it although I can just about guess
what my parents would have said had they still been living.
They probably wouldn't have believed the diagnosis because in their minds the autism word to them would mean a learning problem. Since I always had high grades and no problems with learning, they would have said the psychologists didn't know what they were talking about.
They would probably have had a long talk with her and maybe learn more about it.

I only told two doctors and the houseshare man I live with.
I thought he would perhaps accept my issues better if he thought it was a neurological thing instead
of just letting him think I had mental and anxiety problems.
And it seems he did take it better. He doesn't make fun of me like I thought he would.

 

[mangodude]

the only person i ever told was a lady whom i thought is going to accept it well-
she was my friend at the time.

she didn't take it well, she didn't believe me and then treated me meanly until we broke up

i haven't told my parents nor any other member of my family, we aren't in touch and i know they would react negatively

 

[Suzanne]

My only family is my husband.

I am not official, but those who know me do acknowledge I have aspergers and even my husband, who is a die hard nt lol actually is coming around.

I have two friends now and one I can talk to so easily and that is because she is really vocal on our friendship. She is straight up basically. But we do think she has aspergers too and probably why we get on so very well.

My other friend said recently, because I was on my device. There she goes being an aspie again. I looked up laughing and asked why she said that and her response was: because you are obsessed with your device. I pointed out that she must be an aspie and others, because in fact, I am not as obsessed as nts are.

It is not really talked about to those who know me; just that something is "off" with me.

But for me, it plays havac with my life.

 

[Progster]

Some reactions of people I told:

"It doesn't matter, it's ok."
"I'm sorry, we we should have looked into it further at the time"
"But you're nothing like my friend's son X who has it"
"That's good - now you know what the problem is, you can get help"
"Oh, let me know if she needs any help"

 

[ZebraAutismo]

I was diagnosed when I was 5 my Mum knew for a while I won’t “normal” she went through a brief phase of depression but ultimately was okay with it. My Dad and his family didn’t believe it and thought i’d grow out of it. My sister probably took it the best after reading Curios Incident of the Dog in the Night then. My brother was okay with my diagnosis but wouldn’t take a diagnosis himself.

 

[clg114]

When I was first diagnosed, I was happy about it and told a few people. Some of the reactions I got were very surprising. I have actually been told that I didn't look autistic. How do you react to a statement like that? Consequently now I do not tell anyone who does not need to know because they can not or will not understand.

 

[LearnedCoward]

Anyway, her first response was that it's only a diagnosis if it has prevented you from having a normal life and I worked, raised the kids, etc.

On paper, I have a normal life. I live independently, am well educated, have a good job, have some friends, etc. However, I have struggled with every serious relationship I have been in, have noticeable difficulty with even basic social interactions* and have had long periods of unemployment and/or underemployment. Then I also have sensory issues, severe anxiety and depression, dyspraxia and dysgraphia, and other things that are related to autism but nobody talks about in the context of autism, because autism is supposed to be all about social skills and learning differences :/

*think ordering coffee, for example. Yeah, that basic.

"But you're nothing like my friend's son X who has it"

You're comparing a grown adult to a small child. You have no idea what I was like when I was younger. You don't even know what it's like for me now, so stop trying to minimize my difficulties.

"That's good - now you know what the problem is, you can get help"

Ahaha no I can't.

I grew up in the rural upper Midwest in a time when practically nobody knew anything about autism. Even though people tried to help, their help was hit-or-miss at best. They had no idea how to help, even though they were well intentioned. Even today, in a (supposedly) much more enlightened area of the country, I have been turned down by two therapists in the past calendar year because they don't treat people on the autism spectrum, and have been turned down by a psychiatrist because they are apparently not trained in prescribing psych meds to patients who are both autistic and epileptic.

Besides, autism is a pervasive developmental disorder, by definition. That means it doesn't go away. I can minimize how it affects me, and mask the rest, but I will still always be autistic, and I will always struggle with certain things.

My sister probably took it the best after reading Curios Incident of the Dog in the Night then.

Ugh. I hated that book. It was a book about autism and math about someone who understood neither autism nor math.

I have actually been told that I didn't look autistic.

Well, what are we supposed to look like? It's not like Down's Syndrome or Fetal Alcohol Syndrome where we all look a certain way. That's quite a silly comment.

 

[ZebraAutismo]

On paper, I have a normal life. I live independently, am well educated, have a good job, have some friends, etc. However, I have struggled with every serious relationship I have been in, have noticeable difficulty with even basic social interactions* and have had long periods of unemployment and/or underemployment. Then I also have sensory issues, severe anxiety and depression, dyspraxia and dysgraphia, and other things that are related to autism but nobody talks about in the context of autism, because autism is supposed to be all about social skills and learning differences :/

*think ordering coffee, for example. Yeah, that basic.



You're comparing a grown adult to a small child. You have no idea what I was like when I was younger. You don't even know what it's like for me now, so stop trying to minimize my difficulties.



Ahaha no I can't.

I grew up in the rural upper Midwest in a time when practically nobody knew anything about autism. Even though people tried to help, their help was hit-or-miss at best. They had no idea how to help, even though they were well intentioned. Even today, in a (supposedly) much more enlightened area of the country, I have been turned down by two therapists in the past calendar year because they don't treat people on the autism spectrum, and have been turned down by a psychiatrist because they are apparently not trained in prescribing psych meds to patients who are both autistic and epileptic.

Besides, autism is a pervasive developmental disorder, by definition. That means it doesn't go away. I can minimize how it affects me, and mask the rest, but I will still always be autistic, and I will always struggle with certain things.



Ugh. I hated that book. It was a book about autism and math about someone who understood neither autism nor math.



Well, what are we supposed to look like? It's not like Down's Syndrome or Fetal Alcohol Syndrome where we all look a certain way. That's quite a silly comment.

I like it but i’m one of them weirdo’s who love maths.

 

[Pats]

Wow - so many negative reactions. People do tend to compare it to what little they know about it. My oldest sister who I think just humors me, teaches honors calculus and has experiences with aspergers and I remember her main argument was that I was not smart enough or have a strange obsession. As far as the obsessions as they are portrayed today - how could someone from the 50's ever fit that portrayal when there was no access to anything. We didn't go to the library. We had no internet. All we had was a yard and whatever was in the house and parents who would say "Go play outside". The closest I came was my music. As a teenager I hardly ever left my room and would sit in there and paint posters and listen to my music and learn every piece of information that was provided on the album cover. But I knew it to the point that I could tell you by voice or by sound of the guitar, etc which group member was playing or singing. But that was "just me". Yes, I know it was me. And I know it was me that was forced on occasion to go out with a group of peers, otherwise would be home in my room. It WAS just me, but I live on the spectrum.
I want to be understood and to be understood you have to be believed first. Isn't that one of the reasons we have come to this forum?
And Progster's comment "

now you know what the problem is, you can get help

really hit home. The specialist I was seeing for a while wanted to try to make it easier for me to do the things I am so uncomfortable with. When I was younger and had no choice, maybe, but now why would I? So I quit going. I think there's a lot of specialists out there that want to fix the problem. I didn't need fixed, I needed acceptance - even with myself. I hated who I was because I knew I wasn't like everyone else. I spent my life trying to hide who I was and tired. I felt like an actress with every single person I ever met and lived in fear of someone finding out who I really was. And I never even knew why I felt like that! I just knew I didn't want to be caught or found out and it was a miserable life to live. So, no, I don't want for someone to help me do things - I've done them. I want help to stop hiding who I really am. And part of who I am does not want to do those things. Trying to teach me to do those things easier is not accepting who I am, it's trying to change me and reinforcing hiding who I am.

 

[aspieoutlaw89]

i just keep mine hidden from girls & women my age who may,or would see me with boyfriend-potential.

 

[Gritches]

My reactions were actually quite positive. My parents were just glad for me, my sister immediately got on top of hardcore research about autism (as opposed to saying something ignorant), and that's all the people I care about enough to tell.

Of course, other people found out, but still no negative responses whatsoever. It was only later that I found out that everyone who knows me well enough is afraid of me, so that probably played a role in getting respectful responses.