How to respond?

[Maiasaura]

3 of us (me and my two sons) have aspergers. One of my sons is probably what you would call more stereotypical. He reminds us of Sheldon on Big Bang Theory and we LOVE that about him. My other son and I however get feedback from people when we self-identify as being on the spectrum to the effect of: "hmm. I don't really see it" or "you don't seem like you have aspergers..." and my favorite What's an example of how you have aspergers <I give an example and they reply> well that could describe just about anyone, right?

Now on the one hand I think "whatever, you don't have to see it. Its really something that my sons and I need to know as we navigate the world." On the other hand sure I want to be an ambassador and educate where needed. And on the third hand I'm like I don't want to justify my diagnosis to you, thanks. People are well meaning but this bugs me and I don't know why it does.

What's your experience and do you have some stock responses when you feel like people are saying "well are you SURE you have aspergers?" Thanks

 

[Ylva]

"You don't have to see it" sounds like a good one.

Mine are more along the lines of: "Oh, are you a trained professional psychologist? …I don't see it. You don't look like one."

Obviously adjusted to the actual wording of their comment.

 

[Judge]

From exclusively my perspective, I think what you're asking is likely to be incumbent more often than not on two things:

1) How obvious or not one's autism might appear to others.
2) The ability (or lack thereof) of the average person in your presence to have a fundamental understanding of neurodiversity.

When I "navigate the real world", no one asks and I have come to the conclusion not to tell. I've occasionally had things said "behind my back" that I might hear about...but that's about as far as it ever goes if at all.

In essence, I don't "self-identify" to anyone who doesn't already know and/or who doesn't need to know. Odds are far greater you'll just be engaging in an unpleasant conversation where the other person just won't understand. Simple point: don't go there in the first place.

 

[Suzanne]

Oh don't go there!!!

I have got a similar response ie you don't look different. But I have figured out why they say that. It is because I flounder big time ie feel embarrassed and so unsure of myself, due to self diagnosis that I blurt out: it is on the autism spectrum, because not many people have heard of aspergers and stupid me, feels embarrassed for them - go figure that one lol so of course they only hear: autism and clearly I am not autistic in that sense.

I am learning now, to only tell those who really need to know. The thing is because I have this deep need in me to tell the truth, I have to pull myself in and not blurt out that I have aspergers, but heck that is difficult and have to often remove myself from the room.

I am trying to pluck the courage up to tell a person who really should know, but when I tried before, I got mocked for it and because it is me who says I have it, that is again, enough to crush me.

I had decided to not get a diagnosis, but since then, have changed my mind, for I do see the benefits of it, but this is proving to be very difficult. I live in France and currently cannot find an English speaking psychologist. However, I contacted the SOS yesterday: helpline for the English living in France and spoke to a really super American lady who just accepted me as having aspergers. When I told her that to be honest, aspies know more about aspergers than so called professionals, she laughed and said: of course! You get so absorbed in a project that you become experts yourself! Such a shame she can't diagnose me lol She also agree that aspergers is not static; that we have our good days and bad days. She gave me some links but alas they have not got back to me yet.

 

[watersprite]

From exclusively my perspective, I think what you're asking is likely to be incumbent more often than not on two things:

1) How obvious or not one's autism might appear to others.
2) The ability (or lack thereof) of the average person in your presence to have a fundamental understanding of neurodiversity.

When I "navigate the real world", no one asks and I have come to the conclusion not to tell. I've occasionally had things said "behind my back" that I might hear about...but that's about as far as it ever goes if at all.

In essence, I don't "self-identify" to anyone who doesn't already know and/or who doesn't need to know. Odds are far greater you'll just be engaging in an unpleasant conversation where the other person just won't understand. Simple point: don't go there in the first place.

ditto for me. This says it better and nicer than I was going to do, thanks Judge.

 

[Judge]

ditto for me. This says it better and nicer than I was going to do, thanks Judge.

Thanks, Kestrel.

As Suzanne posted, the whole issue seems like a tightrope to walk....and without a net. In most cases it just seems preferable "not to go there".

Our own issues can be complex just talking about with fellow Aspies. But a total stranger....I'm just inclined to think the odds aren't good that scenario will play out kindly for us.

 

[Tom]

I don't self identify to any but closest friends/family and they have never questioned it.

I'd prefer others did not pick up on it or discuss it so I am happier if it stays hidden. Many over the years have commented to me or to others about me 'being different' but no one has ever mentioned that I might have Aspergers, etc. So they may know somethings up, but do not know what and I am satisfied to leave it at that. Really its none of their business.

If someone did bring it up, I wouldn't lie or deny it. But then it is there idea and they will not then question it like you have experienced.

 

[On the Inside]

I also go the "don't go there" route. While I understand the need to spread awareness of the condition, some people are just not going to buy it, unless they see something unusual in you and ask. Therefore, I am willing to talk about it if the issue arises with someone (not sure, though, it hasn't come up yet) but I'm not going to offer it up without considerable prompting.

Maybe it's different for you, with your son being more stereotypical, you feel a need for solidarity with him, and I think that's great.

 

[Aspieistj]

I was still working as an RN when I learned I was on the spectrum. I was terribly disappointed when health professionals would respond immediately that I absolutely could NOT be an Aspie. I understand they were trying to help me deny that there was something "wrong" with me but I had expected them, as health professionals, to recognize the behaviors I displayed to be actual symptoms of autism and offer support to me as I struggled to learn to live with this knowledge. The worst response came form another RN, my closest friend, when she would say after I did something annoying, "Well, Nance, now that you know what you do wrong, can't you just remember NOT to do THAT again." Shew doesn't have a clue as to what the syndrome or spectrum really means and she has experience as a mental health nurse!. She has a friend with an adult son with severe Asperger symptoms and she just accepts him a a poor "kid" with a terrible flaw while still being brilliant. I don't expect to live long enough for the general public to grasp the reality of being on the spectrum. Damnit!!!! I may be flawed, but I AM NOT BAD!

 

[EdR]

Like several others have posted, I have zero intention of freely advertising that I am on the spectrum. I have been around for a long time and no one has ever identified me as having Asperger's. They may think that I am weird, anti-social, mean spirited, sarcastic, or just plain eff'ed up, but no one has labeled me as autistic. That is fine by me.

The only motivation that I can think of for telling others of my Asperger's is to engender sympathy. Not going to happen; ever. I have enough socialization issues as it is.

Maiasaura cites an ambition to be an ambassador and educator on Asperger's. I wish her success, but that is not a path I will take.

One scenario where I would share my diagnosis is if I identify someone whom I wish to help me improve my socialization skills, or lack thereof. I would ask this person to observe my behavior and reactions to others, my responses to signals and body language and then provide feedback and advice to assist my improvement efforts. There are probably other scenarios where I would tell someone of my HFA, but you can be certain that I will be very selective with the information.

 

[Progster]

I haven't had that reaction from anyone that I told about my diagnosis, but the few people I have told are people who know me well and who recognise that I have social difficulties, they can see that I'm a bit different, so in my case, it was more a case of "oh, so that's what it is." It's not something I tell people because it's a personal matter, and also there are many prejudices and preconceived ideas about ASD around, so much ignorance, and if you don't fit the media stereotype of what they think autism should look like, then they are just going to reject it.

 

[watersprite]

Like several others have posted, I have zero intention of freely advertising that I am on the spectrum. I have been around for a long time and no one has ever identified me as having Asperger's. They may think that I am weird, anti-social, mean spirited, sarcastic, or just plain eff'ed up, but no one has labeled me as autistic. That is fine by me.

The only motivation that I can think of for telling others of my Asperger's is to engender sympathy. Not going to happen; ever. I have enough socialization issues as it is.

Maiasaura cites an ambition to be an ambassador and educator on Asperger's. I wish her success, but that is not a path I will take.

One scenario where I would share my diagnosis is if I identify someone whom I wish to help me improve my socialization skills, or lack thereof. I would ask this person to observe my behavior and reactions to others, my responses to signals and body language and then provide feedback and advice to assist my improvement efforts. There are probably other scenarios where I would tell someone of my HFA, but you can be certain that I will be very selective with the information.

I added the italics. They are clear and helpful statements for someone like me who can come dangerously close to revealing - or even mistakenly blather about personal information, if (rare, but it happens) meet someone who seems to listen to me. I was diagnosed in March and am still finding new ways to percieve and process things.
An ambassador is an honorable avocation but requires abilities and strengths I don't possess.

 

[Suzanne]

I was still working as an RN when I learned I was on the spectrum. I was terribly disappointed when health professionals would respond immediately that I absolutely could NOT be an Aspie. I understand they were trying to help me deny that there was something "wrong" with me but I had expected them, as health professionals, to recognize the behaviors I displayed to be actual symptoms of autism and offer support to me as I struggled to learn to live with this knowledge. The worst response came form another RN, my closest friend, when she would say after I did something annoying, "Well, Nance, now that you know what you do wrong, can't you just remember NOT to do THAT again." Shew doesn't have a clue as to what the syndrome or spectrum really means and she has experience as a mental health nurse!. She has a friend with an adult son with severe Asperger symptoms and she just accepts him a a poor "kid" with a terrible flaw while still being brilliant. I don't expect to live long enough for the general public to grasp the reality of being on the spectrum. Damnit!!!! I may be flawed, but I AM NOT BAD!

Oh goodness me! My eyes opened wide in amazement because that is EXACTLY what my husband says to me: well, no you know, surely you can just remember to not do it again!!!!! I think though, for him it is a case of: I don't want to feel inferior to my wife, but lol he is the only one in this "competition" for I am not into that kind of behaviour.

 

[Spiller]

I've had mixed reactions to telling people - at first, when I initially learned about AS, I wanted to tell everyone I knew:

"Look, this is why I'm not like everyone else! This is The Answer I've been looking for all these years!"

There are those who accept, but as time's moved on I've come to feel less inclined to share and rather continue to pretend that I am like everyone else - this remains, as always, the lonely way to live for me, but I'm getting quite tired of the same negative comments:

"You seem normal enough.."
"Everyone feels like that sometimes.."

The worst comes from my best friend - every time I see him we seem to get into a 'talk at me' style conversation where he tries, sometimes for hours, to convince me that I can socialise, I can do this or that..
I've lived a very different life to any 'normal' person I've ever met - I've never socialised, never participated in the passtimes/social events/interests common to most, spent almost all my life in my own company.. basically I have a different social background, a different 'culture' behind me but, because my experience is so alien to others', it's as if they can't hear, or think I'm making it all up, or am just feeling low..
.. And don't get me started on the opinions of the therapists I've tried to talk to!
I'm not sure now that I see any benefit in being open about it - the odd looks, offhand comments.. There may be those few who accept it, maybe even see it, then, I guess, I'll tentatively broach the subject.

 

[Slithytoves]

I decided to be open from the day I was diagnosed. I've got a long history of activism and advocacy for other minority groups so it was an easy question for me, though I absolutely believe it's a personal decision.

I get a lot of puzzled responses because nothing about me screams "Aspie!" to anyone who doesn't know me extremely well. Everyone close to me accepted it immediately except for my therapist (I've got a thread on that), though my psychiatrist is certain I have it. When I encounter skepticism, I usually just say, "Asperger's manifests differently in different people," and leave it at that. A couple of times I've addressed snarkier reactions with "You can't see it because it's in my brain," or some version of, "Look closer, it's round and purple."

 

[Harrison]

Since I found out I was an aspie I've never had a problem telling people, if they don't like it that is their issue, not mine. Yes, I do occasionally meet people who are in denial but I can usually side step them.

"Look, this is why I'm not like everyone else! This is The Answer I've been looking for all these years!"

So much ^this^.