People relativising AS and telling you that you seem 'normal' to them.

I do not feel particularly comfortable with this support worker, and I have mentioned this to my regular support worker, who is my key-worker and who I see the most and get on with really well. I only see the problematic support worker every now and again, and I have experienced no problems with any other support worker. The problem is that he often jokes and is sarcastic, and I do not get sarcasm or subtle jokes, so I feel very uncomfortable. He also sometimes touches my arm, which I can't stand because I hate unexpected soft touch. I have told him this, but he still sometimes touches or prods my arm, and he also helps put my backpack on when I can do this by myself, and again I don't like people touching me without my permission. He should know not to do this as he works for an autism charity.

Hope said:

I hate it with a passion when people say to me, often randomly, 'I don't think anyone would have thought that you struggle with asperger's, you seem so normal', and then they say that they themselves struggled to fit in at school for some reason and does that mean they therefore have aspergers? It is like they are questioning the diagnosis by implying I cannot possibly have AS because I am so chatty and extrovert!. They do not realise how their comments make me feel sick inside, the anguish and stess the comments make me feel, particularly when the comments come from people who should know better. My regular support worker understands me and would never relativise my AS, but a support worker who has only recently started working with Autistic adults and who does not have much experience in this field, recently came out with these comments and left me feeling hurt and upset, although in other respects I get on with him. I feel like I am a fake, that my identity is being questioned, and it makes me feel unhappy, like I will be a perpetual outsider, not fitting in anywhere. I don't wish to be defined by asperger's, but it is nevertheless such a big part of my identity and I am so proud of my achievements and successes with regard to fighting back against my anxiety and the negative side of my AS and how my experiences have shaped me as a person. I always feel like I have to justify myself and it makes me feel so tense and upset. Anyway, I felt like replying, what am I supposed to look like as a person with AS? Am I supposed to hardly talk, to be rude and non-compliant or highly distracted?.

Has anyone else with high-fuunctioning AS experienced similar issues? I do feel so unhappy at the moment, but maybe I am being too analytical and taking things too far.

All you need to do is be yourself each day. If somebody is mick taking you to be a point where your beginning to really get annoyed, then just don`t talk to the person (i mean really get on your nerves, a joke is fine but not when the joke is being told over and over and over again). Unfortunately people taking jokes too seriously will be common within AS. Has the support worker apologised to you?

Hope said:

Another support worker, who I get on with very well, told me that I am like a swan: graceful and calm on the outside but peddling frantically with my feet against the tide beneath the surface!

That's a lovely analogy.  In my case I'm not sure about 'graceful' but 'peddling frantically with my feet against the tide beneath the surface' describes it exactly.

I have been musing about this subject matter myself today. I think its not the severity of individual characteristics but the number of factors involved that's important. Hence someone can appear to have symptoms of any one kind that compare with experiences of neurotypicals. But its the range of symptoms and the collective effect they have that matters.

I lose information if there are other people talking or there is any background noise complicating what I hear. Either I tune out everything, or sometimes someone I understand one minute seems to be talking a foreign language the next. So I spend ages trying to catch up with the dialogue which just makes matters worse, or trying to nod or mutter something appropriate where I think there's a cue, and hope the other person doesn't take offence, even though I can see they are puzzled.

However this trait is also experience by people with dyslexia, and by people with reduced hearing. So as an individual sympton it is hard to claim it as evidence of ASD.

The answer to people who raise these similarities may be to broaden the topic to other things the NT friend might think they have (subtly, not aggressively) - you'll soon leave them behind.

Another support worker, who I get on with very well, told me that I am like a swan: graceful and calm on the outside but peddling frantically with my feet against the tide beneath the surface!

When people make this kind of comment to me I find it difficult  to know whether they are complimenting me on my ability to cope with my disability or whether they are suggesting that there's actually nothing wrong with me.

As Longman says, AS is an 'invisible' disability and people who are not on the spectrum have no idea of the struggle involved in behaving 'normally' and the resultant stress which can cause actual physical illnesses later in life. 

This is spot-on Zine-tripper. People often have a limited understanding of what ASD is, particularly asperger's syndrome.

Hope said:

I hate it with a passion when people say to me, often randomly, 'I don't think anyone would have thought that you struggle with asperger's, you seem so normal', and then they say that they themselves struggled to fit in at school for some reason and does that mean they therefore have aspergers? It is like they are questioning the diagnosis by implying I cannot possibly have AS because I am so chatty and extrovert!. They do not realise how their comments make me feel sick inside, the anguish and stess the comments make me feel, particularly when the comments come from people who should know better. My regular support worker understands me and would never relativise my AS, but a support worker who has only recently started working with Autistic adults and who does not have much experience in this field, recently came out with these comments and left me feeling hurt and upset, although in other respects I get on with him. I feel like I am a fake, that my identity is being questioned, and it makes me feel unhappy, like I will be a perpetual outsider, not fitting in anywhere. I don't wish to be defined by asperger's, but it is nevertheless such a big part of my identity and I am so proud of my achievements and successes with regard to fighting back against my anxiety and the negative side of my AS and how my experiences have shaped me as a person. I always feel like I have to justify myself and it makes me feel so tense and upset. Anyway, I felt like replying, what am I supposed to look like as a person with AS? Am I supposed to hardly talk, to be rude and non-compliant or highly distracted?.

Has anyone else with high-fuunctioning AS experienced similar issues? I do feel so unhappy at the moment, but maybe I am being too analytical and taking things too far.

I was diagnosed as having Asperger Syndrome in the summer of 2011 (only last year). 

In the early 2000s, I met somebody through voluntary work who shared similar (geeky) interests as me.  She told me that she has Autism and has a carer.  I had no idea that she was Autistic and said so to her.  I (tried) to compliment her by saying that had she not told me, I would never have guessed.  (At the time, I only knew of the stereotypical autism, as depicted in films like "Rainman".) 

And here I am, several years late, diagnosed with Asperger Syndrome and am in a similar position! 

I think the problem is (and I am as guilty of this as anyone else) that films like "Rainman", and maybe the Bruce Willis film (the one in which he protects an Autistic children from the NSA), give a false impression of Autistic Spectrum Disorder.  When you mention Autism, people assume that all Autism is the severe kind and do not realise that Autism varies in severity, from person to person. 

If you ever want to chat with a man with Autism that knows a lot about the World let me know! :)

Thank you KaloJaro and  longman for the moral support. I feel better now. I  have also raised my concerns with my regular support worker, who I get on with really well. She told me that I my anxieties and concerns are legitimate and that the guy in question still has some learning to do with regards to ASD - he has not been with the Autism charity for long and has only recently started to work in outreach.  She knows that comments like the ones he made can be hurtful to people on the spectrum, and I felt relieved after I had told her how I feel. It is perhaps down to ignorance, and  he might have intended to be   complimentary, but it backfired.

Exactly, it's the time factor - the actuality of dealing with the impairment over time. People who make such comments probably have no appreciation of the pressures where things go wrong often and have a build up effect. It is easy to claim to have similar experiences. But it is about living with the constraints those experiences impose.

Inevitably it is an "invisible" disability. But there's no easy way of communicating the difference between impression and practical day to day living.

I went to a training session a few years back, I think it was by the late Genevieve Edmonds, who got the NT audience to pair up and stand back to back and try to explain something to the other person in the absence of eye contact.

I think you have to accept you will always get these comments. Put it down to NT's social blindness. They don't know they depend so much on eye clontact and pragmatics; indeed they will often claim it doesn't exist. They do it automatically so they don't appreciate it. We have to work at it to emulate something of what is required.

So just think of them as ignorant - mice in a maze, or pavlov's dogs. Nothing great about that is there?

People at my school (when they found out I have aspergers) seemed to suddenly expect me to have some sort of meltdown and began treating me like a child ready to have a tantrum at any second. In all honesty the attention scared me half to death, I've survived this long by being invisible, keeping to my own tiny social circle and avoiding those that I feel would target me for my differences.

Most of my family refuse to believe I'm 'truly' someone with AS as I have a younger cousin who was diagnosed before me who is further down on the spectrum, meaning he struggles a lot more, whereas I am simply 'a freak/weird/anti-social/occassionally difficult' child, as though I choose to feel scared, awkward and tense when forced to socialise for long periods of time.

What people need to realise is this:

Its called the Autistic SPECTRUM for a reason.

We're all individual, just like the 'norms', and we all show our AS in our own way. Mine is apparently obvious enough to strangers that many ostracise me from their social groups, yet I am increadably outgoing and trusting amoung my (albiet small) group of friends.

One of my favourite parts of my AS is my tendency to be increadibly blunt and brutally honest at the same time, so I'm not afraid to state my point. When someone claims that I can't possibly have AS and that I'm just awkward, I would simply state that they don't know me well enough to make that judgement. I'd probably get angry and snipe at them with harsh truths if they try to argue against my diagnosis but the point still stands. I'm me, they're not. I have it, they don't.

Your support worker is there to help you and to learn about VARIOUS forms of AS. If you don't happen to fit into their little stereotypical 'slot', tough.

Be proud of who you are and what you've achieved, because only you and those close to you can truly appreciate you for who you are, and thats what matters.