Meeting People Familiar w/ ASD (Will They Think I Fit?)

[Poppet]

I have a little dilemma that I was hoping to get some advice about...
I've recently been looking into joining/attending some ASD real life social/support groups, in order to try to make some friends or at least feel somewhat connected to the ASD community in a real life context (instead of just online message boards).
I've not had a ton of luck finding groups, but I finally found a few. One is a group for adults with aspergers that are meeting this coming Thursday. Another is a woman who works at an autism therapy place in town that wants to meet with me to talk about my experience getting diagnosed, the possibility of setting up a social group for women, and to see some of my resources I've collected about ASD over the past year or so (I told her I'd be interested in doing all of this).

Anyway, so it's a two part problem.

Problem 1) I'm nervous about meeting other people on the spectrum, or people who work with those on the spectrum (especially with children with classic/severe autism) because I'm worried that they won't think I'm "autistic enough"... I worry that they'll think I'm full of it just because I've learned coping skills that help me pass as NT, and I tend to hold back a lot in social situations, so people assume everything is fine with me because I'm being quiet and reserved, even when internally I'm not fine. I'm worried of ignorance and someone thinking I don't outwardly "look" autistic enough. I worry less about this being an issue with the social group, but I am really concerned about it being an issue with the woman who works in the therapy setting as I doubt she's on the spectrum herself, but she deals with a lot of kids who have very obvious ASD issues and traits.
I'm a married 26 year old who looks put together and everything when I go out in public (I like fashion so I dress up when I go out and only rock the PJs hard when at home), so I feel like I'm going to be judged for my outward mask rather than for who I am really. I was diagnosed this year so I've obviously been learning to pass as NT for basically 26 years! I've gotten okay at it.

Problem 2) I live in Virginia USA, and here in the US Autism Speaks is HUGE and well respected. I don't know where you (as a reader) stand on Autism Speaks, but I am very much against their propaganda. I won't bother explaining why (you can watch this for a quick run-down) but in general in the autism support communities in the US, sooooo many people are Autism Speaks supporters, and they don't even know the reasons why someone wouldn't like them. I'm really nervous that the social/support groups I find here (including the two I mentioned above that I might be interacting with soon) will be Autism Speaks supporters and we will clash heavily on the subject. What do I do if I'm in a situation where all is going well and then suddenly we're like, on completely different sides of a very sensitive subject?? I don't know that I could just back down and ignore the issue, but at the same time, I'm not the most articulate person and I don't know if I could effectively explain my position on Autism Speaks without just sounding clueless or insensitive or rude...

So hopefully those concerns made sense and maybe someone out there can give me some advice or tell me their experience with first-time-meetings with other ASD or ASD focused people.

 

[Harrison]

#1 Don't worry. There is no aspie 'look' as far as I know. I managed fifty years before I realised my love of black clothing wasn't because I was a biker. Just be yourself because that is always good enough.

#2 Don't have an opinion if asked. I'd never heard of autism speaks till I came here, plead the fifth or whichever one it is.

Go there to enjoy yourself, anything outside your comfort zone just leave it be until you are more settled.

Have fun.

 

[Spiller]

I'm worried that they won't think I'm "autistic enough"

I have the same worry! I attended my local ASD group for the second time 3 weeks ago, some are sufferers with very diverse issues, some are parents.. and you can't always tell who's who; a woman I talked to last time is a parent and was surprised that I'm an Aspie because I present.. fairly well (I have no idea how well, style doesn't make sense to me, I have to ask someone if I look ok).
My advice is don't worry, just go a couple of times (despite your anxiety) and see what happens. If it doesn't work out, try a different group.
I confess I feel anxious as I type this and imagine myself in your shoes

 

[Judge]

I would have those exact concerns if it were me! I'm certain I'm on the spectrum....but relative to others I have no idea how I would appear to them.

 

[Spiller]

I've been told by therapists that there's a 'Look' to Aspergers and as I haven't got this 'Look', I haven't got AS. Oddly none of them could produce a photo of the 'Look', or even adequately describe it to me, let alone tell me what's wrong with me if its not ASD.
Yet here on AC, there are those that get clothes style, hair style, etc.. and those who, like me, have to be shown stuff. Also, many books I've read on AS & ASD differ from these therapists idea of what the condition is.. I often wonder where these professionals get their knowledge.

 

[Cali Cat]

Yet here on AC, there are those that get clothes style, hair style, etc..

This is interesting to me, because I think I do "get" style (clothes, hair, makeup), but at the same time I can never get them to work for me. I always come out looking frumpy, even when I was young and thin this would be the case. It's like the style is wearing me rather than the other way around.

 

[Spiller]

I can never get them to work for me.

I lived my life believing people just rolled out of bed looking the way they do and I was just the unlucky, poor deformed mutant! Someone took me shopping and showed me clothes and hair style that apparently suit me and I stick to the pattern I've learned.. I still don't know if it's the right 'look' for me and, of course, I've no way of knowing until someone else takes pity on the poor mutie.

 

[Sarsaparilla]

I went to a group for Aspies for a while and there was no real identifying 'look'. One young woman had really nice hair, nails, makeup etc and everyone else just looked pretty average, you probably wouldn't pick them out in a crowd unless you knew where to look - I was in a shop and recognised someone from the group. She had only been to it twice and I wouldn't normally have recognised her, but she was clumsily fumbling with her bag in a way that is all too familiar to me because I do it and that enabled me to pick her out. I doubt anyone without the same symptom would have even guessed though.

 

[Ste11aeres]

She had only been to it twice and I wouldn't normally have recognised her, but she was clumsily fumbling with her bag in a way that is all too familiar to me because I do it and that enabled me to pick her out. I doubt anyone without the same symptom would have even guessed though.

Oh man, you too? you've never had to stand behind me in a checkout lane, have you?

 

[Ste11aeres]

I have a little dilemma that I was hoping to get some advice about...
I've recently been looking into joining/attending some ASD real life social/support groups, in order to try to make some friends or at least feel somewhat connected to the ASD community in a real life context (instead of just online message boards).
I've not had a ton of luck finding groups, but I finally found a few. One is a group for adults with aspergers that are meeting this coming Thursday. Another is a woman who works at an autism therapy place in town that wants to meet with me to talk about my experience getting diagnosed, the possibility of setting up a social group for women, and to see some of my resources I've collected about ASD over the past year or so (I told her I'd be interested in doing all of this).

Anyway, so it's a two part problem.

Problem 1) I'm nervous about meeting other people on the spectrum, or people who work with those on the spectrum (especially with children with classic/severe autism) because I'm worried that they won't think I'm "autistic enough"... I worry that they'll think I'm full of it just because I've learned coping skills that help me pass as NT, and I tend to hold back a lot in social situations, so people assume everything is fine with me because I'm being quiet and reserved, even when internally I'm not fine. I'm worried of ignorance and someone thinking I don't outwardly "look" autistic enough. I worry less about this being an issue with the social group, but I am really concerned about it being an issue with the woman who works in the therapy setting as I doubt she's on the spectrum herself, but she deals with a lot of kids who have very obvious ASD issues and traits.
I'm a married 26 year old who looks put together and everything when I go out in public (I like fashion so I dress up when I go out and only rock the PJs hard when at home), so I feel like I'm going to be judged for my outward mask rather than for who I am really. I was diagnosed this year so I've obviously been learning to pass as NT for basically 26 years! I've gotten okay at it.

Problem 2) I live in Virginia USA, and here in the US Autism Speaks is HUGE and well respected. I don't know where you (as a reader) stand on Autism Speaks, but I am very much against their propaganda. I won't bother explaining why (you can watch this for a quick run-down) but in general in the autism support communities in the US, sooooo many people are Autism Speaks supporters, and they don't even know the reasons why someone wouldn't like them. I'm really nervous that the social/support groups I find here (including the two I mentioned above that I might be interacting with soon) will be Autism Speaks supporters and we will clash heavily on the subject. What do I do if I'm in a situation where all is going well and then suddenly we're like, on completely different sides of a very sensitive subject?? I don't know that I could just back down and ignore the issue, but at the same time, I'm not the most articulate person and I don't know if I could effectively explain my position on Autism Speaks without just sounding clueless or insensitive or rude...

So hopefully those concerns made sense and maybe someone out there can give me some advice or tell me their experience with first-time-meetings with other ASD or ASD focused people.

Generally people who themselves have ASD hate Autism Speaks. People who themselves have ASD understand that not everyone "looks" ASD, and people who themselves have ASD are (in my experience) really good at recognising that someone else does, even when that someone is a person that NTs don't recognize as an Aspie.
This is based off of personal experience. I am a "normal" appearing person when in public due to hard work to appear so I've never ever met an Aspie who was surprised or doubtful at the possibility of me having ASD, but I've known NTs who were either highly surprised, or in one case, disbelieving.

So, based off of my personal experience, your concerns are unnecessary when it comes to other Aspies. However, some of the NTs who work with Aspies might be a different story, and your concerns might be valid in regards to some of them.
(I don't intend that as NT bashing, many of them are well.meaning, and it's not to be expected that the average person would have amazing insights into a neurological condition that he/she doesn't have. I don't have great insights into conditions that I don't have.)

 

[AsheSkyler]

I wouldn't worry about it. I've only known one Aspie and one autistic guy in person (back when the diagnosis weren't officially on the same spectrum). I really wouldn't worry about being judged, especially if the groups are full of people like the autistic guy I knew. Sweetest person you'd ever meet, I don't think he had a judgmental bone in his body (when alcohol wasn't concerned, he was quite against it). And the Aspie was more concerned about studying dragons and magic than on how people acted. Go on, have fun, and don't worry. My experiences say you'll be fine. =)

 

[Ste11aeres]

I've been told by therapists that there's a 'Look' to Aspergers and as I haven't got this 'Look', I haven't got AS. Oddly none of them could produce a photo of the 'Look', or even adequately describe it to me, let alone tell me what's wrong with me if its not ASD.
Yet here on AC, there are those that get clothes style, hair style, etc.. and those who, like me, have to be shown stuff. Also, many books I've read on AS & ASD differ from these therapists idea of what the condition is.. I often wonder where these professionals get their knowledge.

YOu should have asked them to repeat the description that the DSM gives of "the look".
(yes, I know there's no such description. That's my point.)
Sometimes I think therapists are just looking for excuses not to diagnose people.
I am enjoying imagining that they got their knowledge from a powerpoint presentation one of their classmates gave for a student presentation during a college class.

 

[Spiller]

I am enjoying imagining that they got their knowledge from a powerpoint presentation one of their classmates gave for a student presentation during a college class.

Or possibly off a lollypop stick, or a fortune cookie?

 

[Sarsaparilla]

Oh man, you too? you've never had to stand behind me in a checkout lane, have you?

Haha, maybe

 

[AdamR]

I'm nervous about meeting other people on the spectrum, or people who work with those on the spectrum (especially with children with classic/severe autism) because I'm worried that they won't think I'm "autistic enough"... I worry that they'll think I'm full of it just because I've learned coping skills that help me pass as NT....

I can completely understand this fear, from my experience watching my partner, Nadador, approach and engage with AC. I was the one who first joined up here, as I wanted to learn more about AS from people who actually live with it, for the benefit of my relationship. Much of my knowledge had been coming from Nadador's NT family--and from Nadador, but he can have trouble articulating certain aspects of himself, and of his way of seeing the world.

Nadador had never known other Aspies (that he was aware of), and was naturally curious about these people I was interacting with. But he was very hesitant to join, for fear of being rejected, since he has adapted fairly well to the NT world. He wouldn't mind my saying that he is still quite skittish, here. He still flinches, sometimes, reading things that make him feel an outsider in his own "tribe". This was all a bit of a shock to me, but now I understand how important it is for him to feel accepted by other Aspies. In fact, he says he'd never before looked into meeting any--because if he never did, he could always have it as an option, and feel a distant kinship that would be ruined if he actually tried and was rejected.

What I'm saying, then, is that your joining a face-to-face group is in fact an act of bravery, so it's reasonable that you would worry. My guess is, you'll do fine if you can relax and go with the flow.

#1 Don't worry. There is no aspie 'look' as far as I know. I managed fifty years before I realised my love of black clothing wasn't because I was a biker. Just be yourself because that is always good enough.

#2 Don't have an opinion if asked. I'd never heard of autism speaks till I came here, plead the fifth or whichever one it is.

Go there to enjoy yourself, anything outside your comfort zone just leave it be until you are more settled.

Good advice. No need to tempt disagreement.

I'm new to the whole Autism Speaks thing as well, though I hear there is an arm of it in the UK. They must not "speak" quite as loudly, here. That's a mercy.

Someone took me shopping and showed me clothes and hair style that apparently suit me and I stick to the pattern I've learned.. I still don't know if it's the right 'look' for me and, of course, I've no way of knowing...

Nadador is the same way. When he got into television, he ran to his sister-in-law to style him! I don't think he ever steps foot in a clothing store, even today. I certainly haven't seen him do it. When we go for a shop, he stands outside any clothing store I go in, as though an invisible forcefield prevents him entering.

 

[grapesicles]

I don't think you would have anything to worry about! I'm sure others would understand that at the high functioning end of the spectrum we learn to put on our NT masks throughout life to cope with situations we would otherwise find overwhelming and difficult. Diagnoses don't get handed out like birthday cake, they are only given after numerous tests over a long period of time - it's not like anyone can fake their way through such a rigourous process, and I'm sure the others would know that. And most people would be there to make friends and meet new people, you'd all be in the same situation. I hope you enjoy yourself, if you do decide to go to both meetings - I'm sure it'll be very interesting and useful

 

[Ellylldan]

Hehe, I can relate very much to your worries. I was thinking myself to look for some Aspie group and I had the same concern about looks. I have found my stile, more or less, I use make up and I like to wear dresses. I dislike heels so I'm wearing old good Doc Martens with everything, and I think they look very cute with a nice black dress! Plus I leaned to keep my back straight, my head up and be friendly, even still being awkward. But because of how I look people might think I don't have any problems. They tend to think I am just very shy. Just the thing is that even the shyest (does this funny word even exist?!) NT that I've ever met does better than me socially speaking...

But with all these concerns I keep telling myself that hopefully aspies would be more accepting and won't judge me upon the way I look like but will try to get to know ME, the inner me. But I am not sure there is any social group like this in my town, though..

So, Poppet, don't think about all this stuff, go and try to have fun! I wish you to find really nice people there and make friends!

 

[Cynthia]

Don't ever worry about being not autistic enough. It's a spectrum. Everyone is different. As they say, you know one person with Asperger's, you know one person with Asperger's.

Meeting fellow Aspies was one of the best things I ever did. We have a group where I live and we meet up once a month - it's wonderful!! Think about it. You spend all day every day dealing with NTs, and then you get to finally meet people who have the same worries and issues that you have! It is the most honest, supportive, and non-judgmental group I have ever been in. So go meet them! Develop relationships and friendships and support each other!

Our Aspie group runs the gamut, and that's what the whole spectrum is about. One thing that I've noticed, however, is that getting all those Aspies in one room is like harnessing brilliance. There is so much talent and intellect. A lot of insecurities and anxiety, but there is also brilliance! My talents that I have gained from my Asperger's have made me successful in life, and I think of Asperger's as a positive, wonderful thing. I have intellect, talent, and more. We Aspies have a way of thinking that others don't, and many of us are leaders in society. Turn your mentality around to think of Asperger's as a positive thing. Do not feel limited by it.

I also hate all this Autism Speaks crap because it makes us out to be disabled - and I for one am definitely not. Plus Autism Speaks is run by NTs. What about Steve Jobs, Alan Turing, or Dan Akroyd? How do you think either of them would have succeeded in life if they were told that they were disabled and limited by their disability? You have no more limitations to success than NTs do -- but you do have a stronger ability at harnessing your talents. This is one reason why a late diagnosis can be good -- because you have not spent your life being told you have limitations. So go make those connections - and help each other.

 

[Rob]

You mentioned this above:

"I've not had a ton of luck finding groups, but I finally found a few. One is a group for adults with aspergers that are meeting this coming Thursday. Another is a woman who works at an autism therapy place in town that wants to meet with me to talk about my experience getting diagnosed, the possibility of setting up a social group for women, and to see some of my resources I've collected about ASD over the past year or so (I told her I'd be interested in doing all of this)."

I would go to the Thursday group for sure, and even bring some of the resources you collected. When you introduce yourself I would mention some of the resources to the group facilitator there too. If they are familiar with your talking points they would heartily agree with you and this could facilitate a friendship.

And in your second group you mentioned, show her the research you collected and you can get meetings going that are related to the research you did, or other topics related to the resources you collected. One year's research is plenty of material to choose from. Of course new things are discovered every month or so, so it would be welcome to everyone to see what the latest research confirms.

All the best!