Letting people know about your Asperger's

Post Reply New Topic

I've been contemplating it on and off for the last 6 months (basically since I found out). I'm not particularly eager to let them know, but sometimes I think my reactions to some things can be explained a lot better if friends knew. There's also been a couple of points recently where it's been one of those times where it could have been mentioned.
I guess a couple suspect, but those that don't I've only known for the last 4 or so years, and about 5 years ago was the point where I really improved at interaction with people, and making friends much easier and all that. The other point is that I'm thinking that my case is leaning towards the milder side of the scale.

So, I was wondering how other people dealt with it, whether they told others and what reactions they got. I think that's maybe the thing that gets me the most, that they'll start to treat me differently - like I was made of glass - which I know that I don't need...
Thanks all.

I've been wondering about whether that's a good idea as well. My mom said something along the lines of "if you tell people you have asperger's they're going to make some incorrect judgements about you" and that its better to just tell them specific things like "i'm not so good at making eye contact so please dont take offense at it" But I think telling certain people about the syndrome would just make things easier, personally

I think you should be careful about who to tell it to. You should only tell it to people who know you very well. Other people may be in doubt, as they may not know what AS is.

I've told some people. It's actually a good way to teach someone about Asperger's and clear away misconeceptions. Just make sure you trust who you tell.

I've told people, the ones I thought I could trust.

One got jealous and tried to make out like I don't have AS even though it was diagnosed by a professional. I think it was because she kept trying to get attention from the fact she had 'depression' but when she found I had depression, ADHD and AS she thought I'd get more attention so she tried to turn all of my friends against me. Luckily for me my best friend stuck by me.

Jealous of Aspergers? That's a first.

A few years ago I would be scared s**tless to tell anyone anything remotely personal, especially at school, but since I stopped caring what people think I've probably told too many people. I'm really trying to keep a balance.

Attention seekers. Heh, I can imagine some people doing that. Good to hear about your friend, Yameretzu.

There's only a couple of people I would tell - one I've known for 18 years, so he's seen the best and worst of me anyway...
Thanks guys.

Haven't told anyone directly yet, but some of my close friends have probably figured it out. Most of them are pretty bright. Usually, if people ask about my "unsocialness" (Is that even a word?), I just tell them I'm not the most social person around and they believe me.

However, if someone asks me directly (ex. "Do you have AS?"), I probably wouldn't deny it, unless I really don't trust that person.

Only about 1 out of every 4 care enough to remember I told them.

I told my Brother that I thought I might fit the profile of having AS/ASD.

When I explained to him why I thought this might be so and when I explained a bit about AS/ASD to him on the basis of research I had done on the internet and forums like this that I had been reading, he was not at all surprised. He seems to accept it and when I reminded him that I do no thave a formal dx and that therefore my conjecture and speculation could be wholly unfounded, he told me he would support me when I try to find out how to go through a set of formal tests and diagnosis.

I also reminded him that according to 'orthodox' psychiatric/psychological psycho-babble principles, I could theoretically be imagining it all and trying to 'compensate for deficits in personality', he did not accept that line of reasoning.

It is a radical proposition to accept something like this especially when I pointed out to him that if I am right in my tentative speculations of having AS/ASD then there is a statistically significant probability of others in our family having AS/ASD traits or attributes. He did not seem to have a problem with this and it was him who reminded me of some of my behaviours and things when we were growing up.

If I go through the formal testing procedures and the results indicated that I did have AS/ASD, then I would be careful about who I told. One thing is that most people seem to think 'Autistic' means a very definite state and they probably think that you cannot engage with the world as fully and effectively in terms of using language and in terms of cognitive ability of you are really 'autistic'.

The only reason for knowing for sure whether or not it does apply is so that I can take more effective and appropriate steps to cope with life instead of re-raking over 'the past', in search of elusive answers that still evade me after 25 years.

So to answer the question; I would say that the fewer people who know about it the better. In the event of a obtaining a formal diagnosis that indicated AS/ASD, I would not 'wear it on my sleave', as I know I would be met with outright disbelief, scepticism or downright hostility.

Many people think of LFA (low functioning autism) when they think of autism and do not take in mind that autistic people can be (and often are) brilliant.



Is this only counting four people? Or is it counting more than four?

Autism means a child has more of an imaginative deficit than communicative. Aspergers means a child is capable of doing things Socially, though it depends on the severity of these PDD's that specifies capabilities and disabilities of a person. It's not a good thing to tell people you have Autism, only until you have got to know them until you both relate well.

This makes no sense to me, seeing that I do not relate well to anyone I know IRL and am simply not able to. Why hide who you are from anyone? Of course any Aspie who is able to make friends and relate to people well is probably less severely affected by it in the social area than ones who simply cannot develop real relationships and has no need to tell anyone, close friend, or not.

My doc simply refers to me as being autistic, though my DX is Asperger's. Perhaps I am more severely affected by it than a lot of Aspie's (it took me about 3 weeks to be approved for disability and SSI after my first application), but my companion often has to let people know I am autistic when they try to interact with me in some sort of social way and I do not interact with them back. Of course it is not like there isn't something obvious about me that is different. Everywhere I go I have a companion helping me, I do not talk to people, I do not look at people. I do odd things because of my Tourette's. When they try to intrude into my world, she intervenes. Sometimes she has to explain, making them aware of it. At least the manner in which my companion explains it has made things much easier on me, especially in certain music stores where pesty clerks are often trying to sell me something that I am simply stimming on while we are there getting gear. People who come to the house are also informed (repairmen, pest control, etc...). Either the landlord or my companion tells them and instructs them as far as what they should not do around me, like enter, or even ask to enter my studio. This protects my safe space. My family has also had to explain it to neighbors in case I am at my mom's and they stop by unexpectedly, only to see me hiding behind a wall, or running to go hide in the garage upon their arrival. One music store we go to, the managers know I am autistic and it makes it much less stressful for me to enter that place. Legally, I am handicapped by autism and I have not encountered anyone IRL that has treated me poorly because of it. Many do not understand and may say things I have trouble with, but my companion usually tries to help me there, if she catches it in time. At least in my case, considering that I come in contact with so few people, I feel more comfortable that the ones I do come in contact with more frequently are at least aware of some of the "rules" that govern interaction with me, although most NT's seem to forget the rules sometimes (my mom is real good at that).

I think whether, or not you tell someone is a personal decision and can be partly based on your own needs. I am in no way ashamed to admit that I am autistic and I don't care if others think bad of me because of it. Also, admitting it online has given me the opportunity to help several people that suspected they may be Aspies and some that have children that are.

There are MANY autistics who do not hesitate to reveal their autism. Many have written books, many give lectures, many are musicians. Only by revealing the truth can you educate people about it.

Don´t see this as a personal attack, but I can´t view the situation your way. The people your referring to mostly are freelancers, who are not dependent on a job-situation and some are making a living out of their situation by writing about it.

First of all, I´m not dx´d with AS or ASD. Though I would like to have the opinion of a specialist, I don´t have the nerves to speak with my doctor about this. I don´t think I could convince him either, because I behave quite normal superficially seen. I don´t have the social skills to talk about it anyway. Obviously, my situation can´t be compared with yours.

I can´t use an official dx because I have a job and I don´t want my colleages to know about it. I would feel handicapped if they did and I think this could have consequences for my function/job and thus for my independancy. Now I´m just a little bit wierd/introvert in the eyes of colleages, but in an IT-like environment more people are wierd. Furthermore I don´t know what the consequences of an official dx would be, when I should have to search for another job, because having a dx I would have to deny this fact.

The situation I am in now I don´t feel I as real living. I would rather call it surviving in a social world and the fact that superficially nothing is wrong with me only makes things harder.

As a matter of fact I´m a little paranoid about telling specific details about my self on the internet, because I´m afraid someone reading the posts might guess my identity. I know this is almost impossible, because of the huge number of internet-pages, but nevertheless. Details about my personal situation would clarify a lot about me, though.

You are right when you writing "Only by revealing the truth can you educate people about it", but I don´t see this as my personal mission. I´m to busy with surviving.

When I joined my secondary school I asked the SENCO not to tell anyone about my autism... On the first day, when I was out of the class she told the whole form, and I didn't know about this. So, two years later, when I finally felt ready to tell my friend that I *was* autistic, she already knew! They'd all known, and I hadn't known this! Since then I haven't really cared. I've just told anyone who I know well enough to trust that they won't act stupidly to it. But all of the people I've told of my own accord have been really good about it. Maybe I'm just lucky with the people I know.

It feels pretty good to know that your friends know because it means you can be yourself and you don't have to pretend any more.

There is nothing like a show-and-tell for educating NT's about what it is to be Asperger-autistic.

The "show" comes when I'm seen in one of my blatant displays of oddball behaviour.

The "tell" comes when I'm confronted about it and that's when I tell them: "Yeah, I know I'm weird. It's called Asperger's Syndrome and it's a little bit like Tourette's and a little bit like petit-mal epilepsy." I use these terms because the outward signs do somewhat look like those conditions

Last edited by Papillon on 09 Aug 2005, 4:07 pm, edited 1 time in total.