Are we hiding what we want the world to know?

[Pats]

Reading over answers to who should I tell about my diagnosis, I have to ask why the majority is so limiting on who to tell. We are all in agreeance that we wish the rest of the population were more informed about autism and I kind of think that the best way for that to happen is by allowing others to see that we are not some crazy nutcase running around in their midst. But it would help them understand why we turn down invitations to a loud, chaotic event without hurting their feelings. It would help them understand the spectrum and learn that not all HF autists fir into the same pattern.
I totally understand younger students, because labels themselves can give reason for bullying.
Actually, I probably would have told more people if I hadn't read all the 'don't do that' responses and here's how I see it:
Yes, I wasn't diagnosed until I was 59 and already out of the public eye. But those that 'bullied' me bullied me because of my personality and actions - they just didn't like me. I also don't like everyone I meet - but I don't bully them because I don't have that in me. Those that do bully others are going to no matter what. Sometimes I wonder if it would have helped if those people that didn't like me knew why I was like I was. Anyhow, I just think, as an adult, people are going to treat you the way they treat you because of who they are. Most people who have been mean to me are mean to everyone and they are the ones with a problem.
Yes, when it comes to looking for employment I can also understand because the interviewer may think of it as a disability and may not understand it enough. Wouldn't you like to help change that? So future generations can say, "Yes I have autism" and the boss see it as an advantage instead of a hinderance?
Situations may dictate differently. I would not tell my kid's mother in laws because it's up to my child whether or not they want other's to know. Just like when my son came to me and said his best friend's mom wanted to know if I would be okay if she made a play for my ex. She had met him at a cheerleading competition in Vegas and, yes, he's very charming, handsome and smells really nice. I told him it was up to him whether or not he wanted to divulge the fact that his dad was gay (my son knew he was gay and he had figured it out himself).. He was the one it would affect. Therefore, if my child is the one impacted, I believe the decision should be theirs.
People at church. I would rather they know so they would understand that I am not being rude or cold or impolite or unsociable, but rather I have limits due to my autism. I want them to know that I do feel an attachment to them all, I just don't show it the same way NT's do.
If I want the rest of the world to understand what HF autism is, then I feel like I would be the best tool for them to learn this.
I know you are all going to think I'm crazy for this one. I told my ex#2 & 3. #2 because we still have a bond. He's gay and an ex con-artist, but we went through some pretty harrowing times together and we will always have that closeness. I told him because he knows me and I had questions I thought he possibly could answer (though he couldn't because he 'never had any complaints' with me). But my latest ex, I told for completely different reasons. My family knows what a jerk he was, they seen it. But his family doesn't. So I kind of told him that so he can use it as reason with his family why things did not work out with us. It doesn't hurt me, I never see them. He's a narcissist, but if they see him as a wonderful dad, why should I try to change that? I also told him so he would understand why I am not coming back (he kept thinking I might). I explained that when he would do things like come in from work and change music I was listening to and enjoying to music he knew I hated, that it was actually torturing me and I mean that literally. The reason I could not deal with a lot of the things he did was because of my autism and why I am happy with my current arrangement. I needed him to stop hoping or counting on me coming back, even after 4 years of being separated. Then he finally accepted it and went through with a divorce. I don't care if he knows. He knows who I am already and it doesn't change any of that.
I guess that's why I question why keep the diagnosis a secret. People already know who I am and if I tell them about the autism they are going to figure out that it's not a terrible thing.
Input.

 

[Fino]

I've had very similar thoughts about this and about other conditions and about medications!

Especially when it comes to teaching. I've only actually gone through with it once because the student was so curious and smart that it was easy.

But I've been contemplating this notion a lot lately, being open about medication, mental illness, and autism in an attempt to normalize it, make people more comfortable with it, open them up to possibly talk about their own related issues and, like you said, understand me more.

 

[Bedlamite]

I know you are all going to think I'm crazy for this one.

On a more serious note - I find you raising this issue as an open door to a healthy discussion. I think comments here will be very interesting. Plus, I don't think at all you are crazy.

 

[Autistamatic]

I was very much in the autistic closet for most of my life until events earlier this year kind of forced the issue. That's when I thought "stuff it - I'm out in the open whether I like it or not, so let's do it with a bang!" hence starting the YouTube channel.
It's a catch-22 situation regarding disclosure. It can help in some circumstances and if we were generally more open the NT population would start to realise that we are everywhere, not just talked about on TV and in the papers. They'd realise that we're not all children and that we don't grow out of it.
Trouble is that until we get to that position of wider acceptance and understanding of just how much we are like everyone else, but a little different, we run the personal risk of unpleasant, even disastrous consequences.

 

[Judge]

I guess that's why I question why keep the diagnosis a secret. People already know who I am and if I tell them about the autism they are going to figure out that it's not a terrible thing.
Input.

There's great logic in your statement. The problem though, is you can't count on those around you having the same sense of logic. That there's no guarantee of those around you being able to correlate your behavior to traits of autism deemed "acceptable" to the social majority.

Compounded IMO by existing within in a social majority of society that so easily defaults to a notion- and bias that such things are to be processed as a form of mental illness rather than neurodiversity. That there's something fundamentally wrong with you, so there must be something wrong with what you say or try to explain as well. Further compounded by a devastating societal stigma that revolves around mental illness itself. Repelling people far more often than gaining their curiosity and willingness to try to understand.

It's what makes it all one huge "crapshoot" in telling those, even in your closest orbit. Where while you think you know them well enough that they will understand and accept it. Yet some simply will not, no matter how hard you try. Something I've had to deal with firsthand. And yes, it's heartbreaking.

Where a few will want to understand and succeed, while more may try and still fail. And with the vast remainder who simply can't- and won't try to understand, rationalizing that it is you who is out of step with everyone else.

In essence, there is always a chance of success in divulging your autism to much of anyone. However the odds are inherently against you in doing so. No matter how much you think they know who- and what you are.

 

[Theta.G]

There are those who will use it against you. Whether it's out of sadism... emotional reactivity... any ill intent really. It's a vulnerability, in their hands.

Lets say you live with a miserable person who is emotionally reactive and projective. who feels better when others are hurting or in pain. You tell them your sensitive to loud noises. Next thing you know they're slamming doors. Talking on their phone really loud almost yelling. Blasting the tv.
It's not anything you did but if they are having a bad day they will project it onto you as if it were.
Lets say your eyes are sensitive to light or something. A week later they buy light bulbs that are 3x brighter than the previous. A lamp without a shade. Maybe an extremely bright flashlight to torture you while they pretend they're just playing with it.

You also run the risk of getting put in a box. A mental quarantine in the mind whoever you tell. We all know how diverse our autism symptoms are right? Well... an NT who doesn't know much may think ALL of us have issues with being touched, loud noises, etc. Whatever their belief is on a thing we become a partial of that to them. If they are a gossip then they take their "version" of you and project it onto others. Which is likely far, far from the truth. Then, when you meet those people they are already predisposed to believing the fool who gave them a false first impression of you. They will spot some things about your behavior and connect it with what was told to them earlier. Confirmation bias. "Oh, she's avoiding eye contact so everything else must be true."... lol. People will treat you in a different and over time this will change your state and behavior.

There's also the manipulative types. Anyone can go online and look up autism or aspergers then find common weak points among us. We have our weaknesses just like nt's have theirs. Acting the role of a friend just to extract information which would be used by them at a later date.

Basically it's like loading bullets in the gun of whoever you tell. In the future they can pull the trigger any moment for whatever reason. And yet, disclosing some vulnerability seems necessary for relationships.

Anyway when it comes to telling them the truth if they don't believe it or believe you i.e it's too complicated for their stupid ass to understand... it will be used against you. Knowing this, it might just be better to lie and dumb it down extremely far.

Auditory sensitives for example. Instead of saying autism, one could say they got a head injury... or say they were close to an explosion and the injury damaged their ear drums, or the part of the brain responsible for interpreting audio signals. It's something that they would more readily understand and accept into their beliefs.

We could use ptsd as another example.
Lets say you faced a situation that a soldier in the army would. Behind enemy lines. If you tell people it happened in a city or whatever... more than likely they just aren't going to understand at all."I thought only military guys get that". However if you told them you were in the military and this happened overseas their brain will make the connections, they won't doubt you and since they have information in their memory to immediately associate with the chance of them sabotaging you at least short and mid term is lower.

As always, depends on the type of people and situations your dealing with... however... i see way more risks involved than rewards. If it's absolutely necessary telling a loved one or someone who is very trustworthy should be alright.

 

[Pats]

I was very much in the autistic closet for most of my life until events earlier this year kind of forced the issue. That's when I thought "stuff it - I'm out in the open whether I like it or not, so let's do it with a bang!" hence starting the YouTube channel.
It's a catch-22 situation regarding disclosure. It can help in some circumstances and if we were generally more open the NT population would start to realise that we are everywhere, not just talked about on TV and in the papers. They'd realise that we're not all children and that we don't grow out of it.
Trouble is that until we get to that position of wider acceptance and understanding of just how much we are like everyone else, but a little different, we run the personal risk of unpleasant, even disastrous consequences.

what are some disastrous consequences?

 

[Moomin]

I’m quite reluctant to tell people. I have only told three people, personally. All who I thought were friends. And the one that I expected to understand did not understand (her parents are psychologists). The other two do understand but only because they’re on the spectrum. Whilst I’ve had some positive reactions, the negatives ones are quite hurtful so they stand out more. I’ve had my AS be used against me, I’ve been babied because of it (apparently I’m not capable of doing something or forming opinions myself ), I’ve been told that I don’t look like I’m autistic so can’t have it, that my AS can be cured if I give myself over to god (I’m not religious). And those are the highlights. My biggest realization of reluctance came when my aunt, who’s a retired social worker had her friend around. She’s also heavily religious and is a busy-body. She had constantly told me that I didn’t have AS. That she knew all about AS. That no one in the family had it (ignoring my two cousins on the paternal line that are also on the spectrum). That I was going to hell for having AS and by denying that I had it, I was saving my soul. She and her friend were drinking coffee together and she had a conversation regarding the right way to fleece her friends elderly mom out of the old woman’s savings. I might have said that I thought it was wrong to do that. And in the other room, my aunt was asked if I was the niece with the AS....which she replied with a yes, and proceeded to talk about me further. It was very hurtful, confusing and distressing, even more so because I had finally after years of not accepting it properly had that.

If people wish to tell others, that’s great for them. But I’m not comfortable with it. Not everyone will understand. They can be highly uneducated and prejudiced against it.

 

[Autistamatic]

what are some disastrous consequences?

Getting fired from your job, being excluded from school, losing friends, splitting up from a partner, changes to insurance premiums, giving people ammunition to gossip about....
There's a lot can go wrong, it's sad to say.

 

[Pats]

I'm sure my age has much to do with how I think about these things. If there's that person who uses weaknesses to torture you - as my ex seemingly did without knowing my diagnosis. I don't want to be around that person anyway - thus the reason I left. There's that slight chance that had he understood the torture and wanted me to stay, he might would had toned it down. He sees my weaknesses by just learning me - so those things were weapons with or without the diagnosis.

 

[Pats]

Getting fired from your job, being excluded from school, losing friends, splitting up from a partner, changes to insurance premiums, giving people ammunition to gossip about....
There's a lot can go wrong, it's sad to say.

See - that's why I'm sure my age has a lot to do with my thinking. I don't have to risk those things now.

 

[Autistamatic]

I can't go into detail on a public forum, but I have some experience of the consequences of being "outed".

 

[Bedlamite]

Compounded IMO by existing within in a social majority of society that so easily defaults to a notion- and bias that such things are to be processed as a form of mental illness rather than neurodiversity.

Judge, your reply is "spot-on". Society is still in the "birth pains" of receiving creditable information concerning autistic traits and they are not too concerned at this point in time about "bothering" themselves with any level of understanding. But if we don't make a concerted effort to "educate" them, who else will - main stream academia? They, like the sciences, too "confined" by their outdated paradigms.

I'm reminded of the introduction of transpersonal psychology into the sciences back in the sixties. It was met with accusations of lunacy and scientific craziness. But now, decades later with the advent of quantum physics lending credibility, attitudes have changed for the better. Research into transpersonal psychology is now a respected endeavour.

Maybe Pats is just advocating that those of us on the spectrum need to be "pioneers" in the area of educating society.

 

[Pats]

I can't go into detail on a public forum, but I have some experience of the consequences of being "outed".

Sorry you had bad experiences. I probably am a bit naïve when it comes to others. I tend to think they are more like me with best intentions and so on. I always and still have to learn the hard way that some people aren't. I remember hearing some lies told by an ex when I was young and was in shock that someone actually lies. I had a hard time fathoming that. But I was always told I tend to see things through rose colored glasses.

 

[Judge]

Judge, your reply is "spot-on". Society is still in the "birth pains" of receiving creditable information concerning autistic traits and they are not too concerned at this point in time about "bothering" themselves with any level of understanding. But if we don't make a concerted effort to "educate" them, who else will - main stream academia?

The math makes it an especially painful equation. That autism allegedly impacts only 2% of the population. Leaving the other 98% relatively indifferent, unless they are directly impacted by friends or family of that two percentile group.

It's ultimately left up to us or to those who can best communicate our plight to the NT world at large.

However in this respect, I see educating the public in general as a different dynamic from trying to tell someone close to you about your autism. Requiring a "need-to-know" basis. It isn't that you should categorically refrain from telling people, but rather to do so with a great deal of thought to those who truly need to know. In essence, to "proceed with caution".

 

[Pats]

Judge, your reply is "spot-on". Society is still in the "birth pains" of receiving creditable information concerning autistic traits and they are not too concerned at this point in time about "bothering" themselves with any level of understanding. But if we don't make a concerted effort to "educate" them, who else will - main stream academia? They, like the sciences, too "confined" by their outdated paradigms.

I'm reminded of the introduction of transpersonal psychology into the sciences back in the sixties. It was met with accusations of lunacy and scientific craziness. But now, decades later with the advent of quantum physics lending credibility, attitudes have changed for the better. Research into transpersonal psychology is now a respected endeavour.

Maybe Pats is just advocating that those of us on the spectrum need to be "pioneers" in the area of educating society.

You know, maybe some of us who feel they would not be that affected should try to make those first steps for the 'all'. See, I'm also at a point in life that I honestly don't care if people talk about me negatively. I don't care if they hate me and try to turn the world against me (I feel like I don't fit into this world anyway). These things used to cause anxiety, but it just doesn't anymore. Partly because I know that people do talk about other people regardless. And it doesn't always mean they don't still love them and care about them. Maybe it's good that I got my diagnosis so late in life - maybe I can possibly be a pioneer for others.
@Autistamatic your videos are such an asset to informing others and I'm glad that regardless of your past experiences and consequences, you are still strong enough to do these videos. Thank you again.

 

[Bedlamite]

See, I'm also at a point in life that I honestly don't care if people talk about me negatively.

I can understand how young folks are reluctant to be "pioneers". But for me, retired 65 years old, I no longer care what people think of me.

 

[Pats]

I can understand how young folks are reluctant to be "pioneers". But for me, retired 65 years old, I no longer care what people think of me.

And chances are good that I'm not going to hear what these people are saying anyway because most would say it behind my back and not to my face. Whereas I could stand to them and say, listen, yes, I'm autistic and one of those traits is pure honesty, sooooooo.

 

[Judge]

Maybe it's good that I got my diagnosis so late in life - maybe I can possibly be a pioneer for others.

Could be. If you think you're an effective good communicator, go for it.

@Autistamatic your videos are such an asset to informing others and I'm glad that regardless of your past experiences and consequences, you are still strong enough to do these videos. Thank you again.

Indeed. He strikes me as a particularly effective communicator.

I can understand how young folks are reluctant to be "pioneers". But for me, retired 65 years old, I no longer care what people think of me.

I could say the same. With similar circumstances on a daily basis for the most part it doesn't matter. I live in relative isolation anyways.

However I really do care what my nearest relative thinks. In divulging my autism to her, it definitely impaired my relationship with her as my cousin. Someone I thought I had known since we were five years old. I have a brother who took the news far better, however he lives more than a thousand miles away.

 

[Pats]

In divulging my autism to her, it definitely impaired my relationship with her as my cousin.

That's so sad and I truly am sorry. I have such a hard time understanding why you would suddenly be a different person to someone who has known you so many years. I told a cousin and she laughed and said she just always thought I was weird growing up, so now she realizes I wasn't necessarily weird. It actually made us a little closer.
But, again, isn't that on the other person - they changed. We didn't.