Feeling like you can't tell people about your autism

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I wish I could just tell everyone I have autism without having to worry about their reaction or having to explain it to them.

I've been diagnosed with HFA for almost my entire life - pretty much as far back as I have memory. Yet I feel like I can't tell others about it - I have to explain parts of it to explain my behavior, but cannot tell anyone that I have it. For example, I will explain my stims and compulsive movements, when someone expresses curiosity about them - I explain these movements by saying they're involuntary, but I can't tell them that I have HFA. If they ask what makes me do the movements I say "I just do them" or "it's complicated, I'd rather not explain it."

There are plenty of examples of similar things - where I must explain my behavior but feel like I can't say I have HFA.

But why do I feel like I can't say I have HFA?

It's because I can only think of 3 times in my entire life where I told someone I have HFA, and they already knew about it (as in, knew what it was exactly; it's main symptoms, etc., and not just some stereotypical view of it or total ignorance on it). I'm excluding any time where they knew about it before I met them - groups mainly including doctors, teachers, professionals, etc.

Only 3 times in my whole life have I encountered what I would consider a positive reaction after telling them I have it. The rest were negative, for one reason or another, or a combination of reasons; for example one person I knew didn't "believe" in the existence of autism - so I never spoke with them again. That's a more rare occurrence. But most people only have some stereotyped idea of what it is.

One thing that I dislike is how there are no NTs my age (that I know of) with whom I can talk about autism, except for one friend, who was one of those three people I mentioned above. I really wish there was more awareness about autism from the perspective of autistics in general.

Most people won't care. Unless they really (already) care about you. Having a "reason" for being different won't erase the differentness. Careful with disclosure.

Sadly, I don't think most of my friends would handle such news very well. Even my own parents don't know about it - only my grandma suspects something (she is a doctor).

The thing I am most worried about is a change of attitude. I don't want my friends to start being more cautious around me only because I have a "condition". I don't want any fake smiles and comforting words. I want them to treat me the same way they treat anyone else. Therefore, it is best that they don't know.

As for my family - they simply won't understand. They've grown up in communist times, when any kind of deviation from the norm was considered "evil" or even dangerous. Autistic kids are usually considered to be "spoiled", and best cure for their problem is some old-fashioned beating. "Spank him for a few hours and he will stop being autistic" - that's how most parents reason.

It was only in the last few years that society started to become slighlty more aware of the issues of ASD and AS... but most people are still completely ignorant. They don't even approach autists - they are afraid they might get "infected"

Under these circumstances, I can't tell anyone...

Look at our society. It values the warrior. The tough guy. The pro sports jock, the Marrine or the corporate mogul. I have spent my life showing the world the face I believe it wants or expects to see. Not my true self. I believe to do otherwise would be at my own perril esp in the professional environment. So my policy is to walk in the shadows by my own choice and not due to being shunned.

People who are on the spectrum tend in my view to be more sensitive and more "real". Just my opinion. I actually fear for them in a world such as this one...

i get why you might feel wary about telling people about your Dx. society doesnt exactly have a positive view of autism and most stuff we hear from the media is from NTs attempting to whip up fear around the issue. its really irritating to have to explain things like meltdowns, hypo or hyper sensitivity to stimuli, lack of expression and special interests without just saying "autism" and having things cleared up(for all that you can clear things up when so many misconceptions abound). i have a non-disclosure rule now. only a handful of people know and most have dismissed my opinion or actions based on the fact i have aspergers so unless there is no other option i keep it to myself.

I have told a few really close work friends. Outside of that, I am going to work on myself and move on. I would love to become more involved in causes relating to autism someday in the future, but until that day I feel the best thing to do is keep it within the circle that supports me, and live my life like normal because I don't think most NT's have any idea.

Given one of the reactions I've had, I am unsure about saying anything.

I did once say something to a friend who is also on the spectrum. He told me he's not surprised.

I'm so afraid to tell people about it. I can just about bring it up to my mum now, and I sometimes open up about my social difficulties to my mum's sisters and brother, but I don't bring up the actual cause of the social difficulties, I just say about how signifficantly shy I am and how it ruins my life, stuff like that.

My mum always says that if I told my friends about my condition, they won't think any differently of me if they've known me for a long time, but I always think they will. I try to imagine what I would think if one of my friends suddenly turned round and said to me that they have a condition (physical or psychological but invisible), and I know I would still respect them and not think any less or differently of them about it. But I'm not sure how an NT would feel about it. They might get embarrassed. I know I would if I told them.

Also I'm afraid they might not know much about it, only a couple of stereotypes about it, and I don't really fit any of the stereotypes really, and then they might start thinking I'm pretending to have it, just for the sake of it.

That's the stupid trouble with me - I'm too odd to be believed that I'm an average NT, but not odd enough to be believed that I have a disability. So I just have to go on being perceived as ''just weird''.

People hear with their own ears and intentions - not with the intentions you or I have. So the “results” of your message depend rather on the general attitude of the person hearing about your autism than on what is been (f)actually said. If the general attitude towards you is already in a way forgiving and understanding, telling might just give reassurance and add understanding. If the general attitude is the opposite, telling might just add the weaponry to hurt you.

People easily assume that you want some special attention or pity, even if your intention is the opposite. But what has freed me in a way, is the fact that there will always be people who judge you for whatever reason. This I know for sure, since that very same act of judgment is to be found in my own eyes.

I don't usually tell people. It seems too likely to make me look like I'm trying to duck out of responsibility. Even when I told my employer, with the diagnostic report and all, I was expecting they wouldn't be too pleased with me. The work I needed adjustments for was also the stuff that everybody hated doing, and the management had already made it quite plain that they were gunning for anybody who voiced any reservations.

It's because it's an invisible disability. I felt just the same when I had back pain and couldn''t help with the lifting when I was moving house. It just looked too convenient. I'd be suspicious of somebody else in a similar position, so knowing that most people are more assumptive and judgemental than I am (they're mostly not scientists), I expect most of them would just think "he's a liar," but being polite, they wouldn't say so except behind my back.

I told a friend of mine that I suspect I have an ASD. Now he just randomly says 'ass burgers', and I find it highly irritating and offensive. He's my 'best friend', but this and many other things are pushing us apart. This makes me rather sad, because I only have three friends as it is.

I follow the need-to-know rule. If someone doesn't need to know I don't tell them about certain things, including my Asperger's. Among things that should be on the need-to-know list are:

- Financial info
- Personal ID info
- Personal private info
- Medical info

Spectrum disorders fall into both the Personal and the Medical categories. One of the problems with spectrum disorders is that, like other posters have said, it is an invisible disorder. Another problem is that some of the traits involve things like melt downs, shut downs, and other behavior issues. This makes it look like we are trying to make excuses for wilful bad behaviors. Also, because NTs don't have the same problems, and can't relate to it well, our sensory sensitivities make us look fussy and picky to them.

My father was over last week and talking about a movie he had seen about someone with a totally different disorder, and can't understand why I, with Asperger's can't do as well with my life. No two disorders are the same. Heck, even within spectrum disorders, no two people have exactly the same package of troubles. Added to that, I also have some other health issues, so expecting me to be an Asperger's super woman ain't gonna happen. My father, an extrovert, is also bugged that I am not a social person. Trying to bully an introverted hermit who also has Asperger's into being more social, is guaranteed to make that person even less social. People on the spectrum don't handle being bullied well. The trouble is people like my father don't see what they are doing as bullying, but even with good intentions, it is still bullying. If I were to say that to him he would get very ticked off. He owns the trailer I rent from him, so it's best to try to keep the peace by watching what I say. And that's another reason I try not to spend too much time with him. It's not always possible to stop oneself from saying the wrong thing, so the less time we are together, the less chance there is for me to unintentionally cause offence by speaking too bluntly. It doesn't help that my father really doesn't have any understanding of spectrum disorders. I am in my early 50s and self diagnosed just a few years ago. I only heard about Asperger's about 8 years ago, and I know my father has no real knowledge of what it entails. My giving him info on it wouldn't help. He is in his mid 80s, and grew up in a time when people treated all behavior problems as wilful misbehavior, no matter what the real cause was. He believes that everyone can control and change their behavior to fit the basic normal herd pattern, and that if you don't, you are choosing not to, or aren't making any effort to change. He feels the same way about my non social behavior. He absolutely can't believe that anyone can actually like being alone all the time. I can handle being with other people when running errands, visiting the doctors, or occasional family visits, but I have no desire to socialize beyond that, and being non social doesn't bother me. My father believes that anyone who is non social is either terribly unhappy over it, or mentally ill--and I don't mean the neurological mental condition of spectrum disorders. I am not unhappy when I am alone, and prefer that over being with other people, but I am not about to convince my father of that, since he still doesn't believe that after over 50 years of my being alive.

We have trouble enough with relatives who don't understand or believe in spectrum disorders. How can we expect better results in our dealings with the rest of the world, when we tell them about our disorder? I certainly don't expect better results, so I don't spread it around. Instead, like you Atomsk, I will describe a problem with parts of my condition without saying I am on the spectrum.

It is unrealistic to expect the rest of the world to learn all about spectrum disorders. Outside the medical profession, most people don't have the time, the energy, and the inclination to bone up on medical conditions that don't affect them or family or friends. This leaves us stuck with the difficult choice of sharing or not sharing the news and details of our condition. Before making the choice either way, we each need to consider the possible repercussions of either choice.

It's hard being on the spectrum and we didn't choose this life, but we have to make the most of the hand we were dealt.

Yeah, this is another one of the big reasons why I keep the fact that I have HFA a need-to-know thing - often people will treat me differently afterwards, and sometimes do things like dismiss my opinion or actions or whatever.

I can't remember which book it was, but someone suggested withholding the actual diagnosis, but explaining the problem. Ah, that was Temple Grandin's advice in "The way I see it" article compliation.

e.g. Rather than saying I have HFA which makes it hard for me to tolerate direct sunlight. Just say, I am light sensitive, so I can't handle bright sunlight. Or, I find it hard to concentrate with a lot of background noise. It isn't always nessassary to give the full details, just what support you need at any given time.

There is a great book that is entirely about the disclosure subject titled "Coming out Asperger: Diagnosis, Disclosure and Self-Confidence" it's well worth a read and might help you understand some of the conflicting arguments for disclosure. There are 18 main contributors so there are many different perspectives on the subject.

It's a shame that an individuals reaction to the information is so unpredictable, most of it is just plain ignorance and the only way that can be overcome is through people explaining the condition. Catch-22.

Jason.

Sometimes I wish I can tell people I have Asperger's but I don't. I have noticed it seems like explaining myself is not enough so I bet if they had a word for it, then they might get it but I still don't tell them. I used to be more open about having it when I was in my early teens but then I started to keep it a secret after I started to read about it. But there was no difference after they knew I had it and I don't know if they still remember if I have it or not. There was no difference from my husband's side either when he told his family and his brother's ex girlfriend.

What is stopping me is lots of things, being embarrassed about it, being afraid they won't believe I have it, them making false assumptions about me about what I can't do, changes in their attitude.

My closer friends from my school & college days were not surprised at all when I told them that I might be autistic. We were mostly misfits anyway, so quirks were accepted. Very, very few others know (except for the WP members). I also mostly refrain from disclosin this because the dx is not in yet (though I have good but not SOLID evidence I was dxed with Childhood schizo. or classic autism as a toddler, which my parents covered up. Quite typical thing for them to do!) and not official.

Sincerely,
Matthew