"Oh, but you don't seem like you have Asperger's..."

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Hello all, it's been a while since I last posted on here but I wanted to discuss something that's been on my mind lately.

Recently, upon graduating from university 2 years ago, I've noticed a recurring (and in all honesty, frustrating) tendency when I share my Asperger's diagnosis with others. I am often met with a typical response along the lines of - "Oh really? But you seem normal. You don't look like you have Asperger's..."

This leaves me with the feeling that I'm walking on egg shells because, on the one hand, I in no way wish to exaggerate my learning difficulty in an attempt to seek sympathy. On the other hand, I want to be open about my learning difficulty to help others understand it better and make them aware of my challenges. It puzzles me also, that when people witness behaviour in me that they perceive to be odd by their standards (anxiety over specific things, obsessive routine, misunderstandings, etc.), they ask me why that is. But when I explain that it has a correlation with my Asperger's - my reasoning remains insufficient for them.

I'm sure this isn't an issue solely for me, but for many others on the spectrum too. I hope I speak for all of us when I say, those of us with Asperger's don't want sympathy - we just want understanding.

How have any of you had to contend with such a response? What have your experiences been?

Just stop telling people you have Aspergers. Only tell people you trust.

This sounds like a good opportunity to educate those people about the definition and diversity of Aspergers Syndrome.

I end up educating a whole lot of people. First I tell them that I know and understand that they mean well and I appreciate the sentiment. But I also tell them that even though I understand they meant it as a compliment, it is not one. Then I go on to educate them as to why I feel the way I do. I try to do it with lots of gentleness and understanding and compassion towards them because I feel like they are just ignorant and down right rude twats. But it's not good to sink to that level of rudeness so I just very kindly and lovingly educate them. And that usually works because if you approach it in a kind and gentle way, they will usually listen and learn because they were not trying to be mean. They were actually trying to be nice. So if you are nice back, you will find that they really do want to learn. And then they really respect you.

I only tell people i know well, and trust. Not everyone is a good candidate for education on the subject of autism/aspergers.

I am a little more free with telling people about my son's autism--people tend to be more understanding of a child. But even then it is usually in the context of needing some explanation for a behavior that is different than what is normally expected of a child his age. His physical appearance is normal for a kid of his age and only when you watch him do you see the autistic behaviors. People often expect him to act more mature than he does--he is quite big for his age and acts quite immature for his age due to his autism. I am quick to educate someone who is being nasty to him for things that he can't help.

But for myself--i often find i am more successful if i don't tell a lot of people. In an adult, an explanation of high functioning autism or aspergers seems to be looked upon as an excuse for "being weird." If i get those vibes from people, my experience so far has been that it is not worth my time to educate them because they likely don't want to understand. Being too open and vulnerable with people gives them more to use against you later, and I tend to be vulnerable enough in social situations due to autistic traits. I don't want to give someone more ammunition to use against me.

If someone does truly want to know and seems to understand, i will definitely take the time to explain.

People have this weird idea with high functioning Autistics that once we turn 18 the Autism just goes away and we magically turn into NT's. I actually had one lady ask me when I told her I was an Aspie, "Shouldn't you have outgrown that by now?" So any Autistic behavior we might show is just not acceptable. It's much more acceptable if it's a child because many people still view HFA as a childhood syndrome that gets out grown. I don't know how people feel towards LFA's so I won't speak on their behalf on my experience with this since I only know my perspective. But I wonder for those of you who are LFA, do you experience this also?

My social life in the decade before my diagnosis consisted of just a handful of online friends - who knew perfectly well that I was reclusive, had strange obsessive interests, and dealt with constant stress over having to interact just with my own family members.

But when I told them I'd finally been diagnosed, they didn't want to believe it. Despite the ten years they'd witnessed me being a nervous wreck over any social interaction at all - no, it couldn't possibly be autism. I'm just making excuses, and trying to be a special snowflake.

As a result, I stopped speaking to anyone, at all. Because there's such a stigma about 'claiming' to have autism, I just don't socialize with anyone, ever. I can't pretend to be normal, and I can't say I'm autistic, so my only option is to avoid people altogether.

And you know what? Now I really do come across as autistic, because I only leave my house like 5 times a year, and rarely speak to anyone. (And I don't mean this as a complaint; the truth is I've never been happier, in terms of my social life! )

Not only that, but the people who have developed coping mechanisms (and appear mostly normal or what has been mentioned here as the "Uncanny Valley") but can start to fail because of what I am learning as Autism Burnout.

The Donald has spoken! How dare we discuss the challenges of living with autism, on an autism forum?

You're much softer with people than I can often muster on this topic. But you're right, of you explain it compassionately people are more likely to understand. However I do believe they have to be told this sort of attitude is not a compliment, and should not be said to autistics. I read an article on this attitude directed at the author, who basically said that what people are implying when they say this sort of thing is "oh but autistics are defective, and you don't seem defective!"
Not every autistic perceives this as a bad thing or thinks it is appropriate to feel sorry for autistic people. Plus it always floors me how people think they know all about you, got you all figured out, from ten minutes of conversation. As many people have pointed out, if they catch you in a meltdown/shutdown/burnout situation, or even just in private without your "normal" face on, they might change their minds.
To the OP - if you want to educate that might help, or point them toward material to do so themselves, otherwise only mention it when it is directly an issue.

Yes, they're a troll.

My mother: "You don't have any syndrome. You were just an average kid who liked to read newspapers at age 4."

Strangely enough, my mother likely was AS herself. Her younger brother definitely was AS, but never diagnosed due to overriding schizophrenia and PTSD.

Thanks for your comments people, they've been really helpful and has given me some things to consider.

One final question though, is there any suggested reading or articles (both online or in print) that address this issue specifically?

I don't disclose ASD, just like I don't disclose PTSD. Most people are afraid of words and concepts they don't know - and I believe many don't want to learn. However, I don't usually hide my quirks, and fortunately, I'm a creative person, so many people just shrug and figure I'm the "artist type", which makes my quirks natural in their view.

I believe disclosure or non-disclosure is a personal matter - depends on the person you tell it to, and depends on you as well. The more comfortable you are with whatever you are disclosing, the more comfortable the other person will be too.

Do you mean articles about your original question like people saying you don't have ASD? If that is what you mean, I have read lots of blogs about it but not really any like real official kinds of documentation.

That's hilarious. Yeah, average kid who likes reading the newspaper at age four. Like there are so many of those around. Good one mom.

I know there are lots of opinions on this all over the board. I am not sure where I stand, I am not really capable of concealing information so it just gets out there.

But one thing I have noticed is when you have a problem, people tend to forget about it real quick. If you have a sore leg, they might give you all sorts of sympathy and then an hour later forget and e-mail you and ask you to come by their office across the building.

I told my boss for years that I did not feel like a good manager and I might want to step down because it was just too much stress. She knows I have aspergers and knows I have been getting therapy to deal with stress. So a few months ago I told her I definitely wanted to step down and next thing I know she is loading me down with all these extra tasks which drive my stress thru the roof even more.
If it is not your problem it is reall easy to forget. I am pretty sure it is forgetting, not that they just dont care.