Identity problems, people not understanding

I have asperger's syndrome, but I do not look 'disabled'. Whenever I tell someone that I have AS, they-the un-trained average person-will say, 'I would never have known, it must be very mild'. But my AS is certainly not 'mild' in terms of how it reduces my life; it only LOOKS mild because of my ability to mask my difficulties, and because of my high levels of insight into my condition and self-awareness. So what am I supposed to say? To agree that I am 'mild' would be dishonest, but often I am not in the mood to explain all my difficulties: how I need to be in control, have serious anxiety problems, constant tension, no real connection with other people, the loneliness and confusion.

 

People are also surprised when I tell them my age. THey are shocked, thinking cnnot possibly be 23 yrs old. I look a lot younger than my years. As a result of people not taking me serioUSLY, I have no sense of identity. I guess it makes me feel angry and even more confused. Mild, eh?  I could not make friends at school, I cannot get a job, I have extreme obsessions...I was only diagnosed with AS two years ago. It was a massive relief because I used to think I had a personality disorder. THe psychiatrist and nurse specialist in AS noted all my difficulties and told me that I should have been diagnosed when I was a lot younger. AS is such a big part of my identity now, and having met other people with AS, I have found out that my difficulties are not unique, that there are other people who are very similar to myself, and not all of they look 'disabled', even though they are actually very disabled; it is all hidden. I just wish that  other people, without AS and who are not professionals, would not express srprise when I tell them. I know that they probably think they are being kind, that it is nice to be told you don't lok disabled. But for me, being told this just makes me feel confused, like I am in a no mans-land of not fitting in anywhere

  • Hi :)

    I always thought I was quite empathic, but after taking this Baron-Cohen test, I only scored 26!

    I know I'm sarcastic and blunt and have very few friends etc but even if I ever mention a trait someone will always pipe up - 'oh I do that' or 'xx does that' etc.

    I've managed to mould my personality/job around who I am... not easy but I just push on. BTW - I'm not diagnosed nor suggest I have ASD etc but just surprised by my results.

    Hi anyway   I'm Smiling (always on the inside), new to the site *waving*

  • That's a good idea, I have just joined the NAS, membership includes on of the cards Hope mentioned.  They look good but I'm not sure how much I will use them.  As Hope says, the difficulty is knowing who to tell, and I'm still not sure.

    Certainly anyone professional, if for no other reason than there should be an advantage in them knowing.  As for friends, good question, if they see you differently afterwards were they really friends anyway?  And with groups of people I think I will tell someone I trust not to spread the information, and hope that they will step in if needed.

    Thanks for the link, that will be very useful.

  • Jaffa Cakes said:

    How does that sound?  I'm also adding my contact details and I've put a backgound of the multicoloured puzzle graphic.  I have also emailed NAS today to see if they can create a shorter link to their "what is ASperger Syndrome" page.  Good page but the current link is huge:  www.autism.org.uk/.../what-is-asperger-syndrome.aspx

     

    Hi Jaffa Cakes,

    Printing your own card sounds like a great idea, especially since it'd allow you to tailor the information included to your specific needs.

    Just wanted to let you know that there is an alias for the page you're after that's much shorter -

    http://www.autism.org.uk/asperger

    Hope that helps and good luck with the card.

    Don't know if you'd want some cards with contact details and some without? Maybe for circumstances where you'd want people to understand your Aspergers but wouldn't want to share private information?

     

  • Hope, in time I hope I can be like you.  At the moment I tend to realise I've done something after the event, sometimes too long for me to be able to go back and say anything.  Plus a lot of people know me from before I'd even heard of Aspergers, I feel that some of they my be more confident dealing with me if they know.

    I did the empathy quotient from here:  glennrowe.net/.../EmpathyQuotient.aspx

    I scored a whopping 10 points!

    I'll have a look at the NAS wallet and see what it has.

  •  

    I have got an NAS wallet that contains info on autism/asperger, but I have not yet used it. I am ashamed to say that I feel embarrassed about wearing my AS on my sleeve, even though, paradoxically, I want people to know that I have it!.

    I have learnt very well how to cover my AS when I am in public. I know all the right moves: smiles, nodding head to express interest, asking polite questions, trying to make eye contact. I can indeed pass for 'normal', whatever that means. But this is all rote for me, it is an effort and consequently interaction, particularly with people who I don't know well,makes me feel tense. When I was younger I had no self-awareness at all. Awareness did not start to develop until I was about 15 yrs, and I have slowly but painfully matured since then. At 11 years old, I would go up to complete strangers, tap them on their backs and ask them silly questions. I never took their feelings into account, I had no empathy at all. I was very immature and consequently I got into trouble. But lately I have developed a certain level of empathy, although I scored very low on the Baron-Cohen empathy quotient, so my empathy still needs to be improved, and I will never have real empathy.

    I do not have intuitive empathy. I have to analyse things before I can summon the correct emotion. Most of my interactions are staged and artificial. I smile because I know that I should, I am polite because I know that I should, I follow the rules. I cannot interact with people in an instinctive, emotional way. I cannot cfonnect with people

  • Useful for some, but I wanted to get across what will actually be helpful to me, the NAS card is just an introduction.

    I have written: Because I have Aspergers I experience difficulties in social/communication situations, I appear aloof and awkward.  This is not my intention.  Please:

    - Give me space

    - Don’t bombard be with multiple communication

    - Allow me opportunity to speak

     

    How does that sound?  I'm also adding my contact details and I've put a backgound of the multicoloured puzzle graphic.  I have also emailed NAS today to see if they can create a shorter link to their "what is ASperger Syndrome" page.  Good page but the current link is huge:  www.autism.org.uk/.../what-is-asperger-syndrome.aspx

     

    I can create more if anyone is interested, png files seem to work well on the Vistaprint site.

  • Thanks for the links.  I'll see if I can get some cheap cards from them.  There is a really good t-shirt printer in Warrington Market, I'll go to him.

    I can agree that some people are best avoided, even if it's hard at the time.

  • i know it sounds the wrong way round but i have found that overall it is a benefit, not negative

    as autistics we have to, for now, accept that most people will avoid us. it is natural human behaviour for them to want to be around cool, attractive, successful people and we should not judge them for that. i have found it better for my mental health to stay away from them anyway.

    re: clothing, here are some examples

    www.flickr.com/.../

    there is a good site for ordering custom clothes and cards etc. here...

    http://www.vistaprint.co.uk

    i have had loads of stuff done for free using their promotions, only paying for postage!

  • Love the bike.

    I am the same, I am about to get a t-shirt printed and am also going to print out some 'business cards' as I find that people don't listen to me.

    I want to tell people (I have a very recent diagnosis) but am very afraid that the people who already think I am 'Odd' will completely shun me

  • hello hope

    i am the same. i don't look disabled but i have many serious impairments and it is a real problem. it is further componded because i am very high functioning (IQ150+) and people cannot accept that a clever person can find things so difficult that they take for granted. plus people dislike clever people.

    i have found a way that helps me to be myself. i have made and had made various badges and clothing embroidered with my brand name 'autistic'. it helps people check their expectations beforehand, so that when responses or eye contact are not as they expect, they don't immediately become offended, defensive or judgemental.

    it is also extremely important because of the new legal fairness act. people have to follow the rules only if they could reasonably know that you have a disability - which is impossible in our case, without forewarning.

    look at my bike on this post http://community.autism.org.uk/discussions/general-discussions/general-chat/my-bike-registration-aut1e