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Roxy

Anyone Have Problems With Family Members Or "Friends" "Outing" Them In Public Places?

14 posts in this topic

Posted (edited)

I was recently in a store with my mom and she basically was trying to get an early delivery for a bed, so said to the store girl (who was my age which made the embarrassment/anger/frustration worse) that I "have a disability" so would be helpful if they can get an early delivery.. I was furious my face really got angry and I had a panic attack.. my head started shaking and I put my head down as everyone was looking at me afterwards when I was walking through town.. could see I was furious/upset..

Has anyone else had this? I'm not ashamed of my Aspergers but I feel it's not fair for anyone else to use it in this way, it is down to me to tell people.. you wouldn't say "he's got cancer" to strangers.. I'd rather people get to know my personality first before telling them which I think is fair? 

Any advice how to cope with it? I'm trying to make friends and meet new people as just moved into new area and things like this make things harder (if that girl goes and tells her friends etc and it spreads) or am I being too paranoid and I should let it go not get mad with my mum? it's just hard to overcome the barrier/stigma sometimes though maybe I should admit defeat? =(

Edited by Roxy
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Posted (edited)

I don't understand why but I get really paranoid/conscious when people know I have Aspergers or a disability, I feel like they are staring at me or judging me badly.. I don't like feeling like a second class citizen because of a condition I was born with, and I don't think I should be defined by a label.. I'm much more than that. I'm trying to improve, be more social, make friends and I feel like things like this doesn't help ! 

 

I know my mom probably didn't realise and wasn't doing it maliciously but it's caused me to curl up in my room the rest of the day not eating, not wanting to see anyone, basically neglecting my health because I'm too mad/angry.. my anxiety levels are sky high =( 

 

She's done it before and I got really mad with her, but she keeps doing it.. it seems like she either doesn't understand or doing it maliciously to hurt me :( 

 

I hope someone can help me?

Edited by Roxy
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It sounds to me like she was using your Asperger's to get a faster delivery on the bed - it really isn't fair to use your condition in this way, or to tell other people without your permission. Your condition is your personal business, and there's absolutely no reason why a sales person in a store needs to know. I think you need to have a strong and direct talk with her and tell her this and how it makes you feel, and perhaps avoid situations where you are together if you think she might do something like that again.

Something like that happened to me - I had told my mum that only close family members were to be told, but she also told a couple of her friends. Then, we were at the reception at the health centre, and she told the reception lady that I had been diagnosed with a 'disease'. Firstly, Asperger's is not a disease, and secondly she had no business telling the reception lady this, she is not the doctor and doesn't need to know.

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Sorry this happened @Roxy :( As @Nesf mentioned, it does seem like it was being used as an excuse to get earlier delivery, which is a shame.

I can't say I remember any times where this has happened to me - I know on a few occasions I have had to bring it up myself, because an explanation has unfortunately been necessary. And there were times when my brother was younger that I mentioned his Autism to enable me to supervise him - like in play areas etc., where children his age shouldn't have needed supervision. But they have all been in situations where it was important that it was mentioned. 

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Nesf and Willow are spot on about this - no one including parents should reveal personal details about another person unless they have permission. This is particularly so if those details could be used against a person but even sometimes revealing their achievements can make someone self-conscious. The irony is that many of these indiscreet people are often thought to be very engaging and socially skilled but it's not good social skills to reveal information about someone else in this way. Unfortunately we are still in a world where knowledge of AS tends to be limited and often flawed and negative so it's information that should only be disclosed with great care. There's also the question of relevant disclosure and getting earlier delivery of a bed hardly seems to pass that test. There are some occasions when disclosing AS is important but this is certainly one of them.

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It sounds like you should talk to your mom to tell her it really upsets you when she tells people about your condition, or at least to ask you first if it's ok if she tells someone about it.

I agree that this doesn't seem like the kind of time you need to mention Autism, (unless you really needed the bed early due to sleep problems) I know throughout my childhood my mum has told people about my Autism but it has only been for safety reasons or to help me out. Your mom probably thought she was helping too. I don't mind too much if people know, and I usually feel better if they do know because it explains in case anything goes wrong and I might need help, which is rare but still, it somehow feels safer.  But I would never say it to get 'bonuses' or free stuff or anything! 
 

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With me, its been more telling people that I've written books on AS which then leads to the inevitable realisation that I have it myself, or they ask what my interest is in AS. My Auntie once rolled up at the local newspaper office with one of the books. I had moved away so they contacted my mum, who said she'd need to ask me if its ok for her to pass on my details. After a week, I went along with it, but didn't reply to the paper at first as was reluctant. Since they badgered me, I finally relented, but it meant ex school friends etc found out. However, no longer living there makes it matter less, but still..

I've had other friends and relatives bringing it up related aspects eg my disability allowance in front of other people who don't need to know. Currently I'm on redeployment at work due to finding my tasks difficult and one colleague told a visitor from another team about it, and I gently told him not to do so again.

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Posted (edited)

I would have rather not get a quicker delivery for a bed if it meant revealing my Aspergers to a stranger.. my big issue is socialising and how is this going to help me if strangers know? when you type in Aspergers in google there is too many things not related to me as we are ALL different. I hate labels in general I think we are all different and by definition ALL have a disability.

 

Like that girl could have friends in the same area as me, and it will spread especially if I'm friends with someone she knows or meet someone local at an event etc.. it makes me feel conscious and paranoid even if like my mum says she won't remember me and I should be proud of my achievements dealing with Aspergers.. sadly the general public don't think like that, it is a stigma and a stick to beat you with, a weakness.. :( 

 

I've come along way without having to use my disability as a weapon, I've told people to treat me for me and not my disability, even if it means I'm treated harsher I just want equal opportunity for good and bad you know.. 

My mum and nan think I overreacted but it really upset me.. my family seem to think because I get "extra money" for my disability I have to tell EVERYONE and broadcast it because I'm getting extra money that I can't have it both ways like use it when I want etc.. BUT I'd rather not have the extra money it wasn't my choice to be born with a disability !!

Edited by Roxy
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You wouldn't say to someone "they've got cancer" or they are "an alcoholic/druggie" in the same situation.. and in the shape of alcohholi and drugs people do have that initial choice.. Aspergers was beyond my control but even people with drugs/alcohol problems don't have to put up with the same crap I do it seems, they have loads of friends, find relationships, be happy etc.. just annoys me when I've worked so hard I get this crap I don't need ! 

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2 hours ago, Roxy said:

My mum and nan think I overreacted but it really upset me.. my family seem to think because I get "extra money" for my disability I have to tell EVERYONE and broadcast it because I'm getting extra money that I can't have it both ways like use it when I want etc.. BUT I'd rather not have the extra money it wasn't my choice to be born with a disability !

Where you get money from and what it is for is also a private matter and none of anybody's business - it certainly isn't a reason to tell people about your Asperger's.

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Posted (edited)

The place was accepting volunteers and would've been a good place to get to know the area as I've just moved here..  as it's in the town centre and you will be dealing with customers everyday

It's put me off volunteering there now as it's made me more anxious.. I would've been fine going before to ask but my mum has actually made my Anxiety worse !! why can't she see that with Aspergers it is already hard enough for me I don't need this too? it just makes me too nervous/scared... 

 

Anyone have any advice? should I go volunteer there or volunteer someplace else what would you do? it seems ruined now.. I'm very nervous/scared about going to volunteer there now :( 

Edited by Roxy
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On 8/3/2017 at 1:13 PM, Nesf said:

Where you get money from and what it is for is also a private matter and none of anybody's business - it certainly isn't a reason to tell people about your Asperger's.

 

Agree, people who are drug addicts or alcoholics or cancer don't have to go around telling people that they get help or counselling etc.. it just seems so unfair it seems impossible odds to overcome somedays I'm like why bother!? :( 

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17 hours ago, Roxy said:

Anyone have any advice? should I go volunteer there or volunteer someplace else what would you do? it seems ruined now.. I'm very nervous/scared about going to volunteer there now :( 

You don't have anything to lose by trying, or you could try somewhere else, but best not to take your mum in with you when you ask, get her to wait outside for you.

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I've had the opposite.

My mum tells me not to "wear it as a badge", when I mentioned that I got an emergency card for my wallet, to that emergency services can see that I am autistic. So if police or any public service person thinks my behavior is odd (different eye contact or reaction), then they'd understand I am not trying to be difficult. My family have stigma with this.

My former best friend publicly denounced me in front of my friends on my facebook timeline, telling me that I am not autistic (even though I'm officially diagnosed) and that I shouldn't say things that devalue me in public! After 15 years as best friends, I decided to cut ties. There were other things too, but if someone decides to disclose their autism, it is their choice and the last thing that someone needs is their best friend doubting instead of supporting.

Thankfully, nobody has outed me yet but sadly, they seem more likely to want me to keep it a secret, as if I've done something wrong, or should be ashamed I feel.

:(

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