as small as a world and as large as alone, Curious (asking this in the hope that you repost...

10:28pm June 30, 2014

Anonymous asked: Curious (asking this in the hope that you repost and maybe get some followers responding as I'm not very active here) how you feel about disclosing ones autism diagnosis. Perhaps for you it isn't a choice but people like me it is. I have mild & persistent social issues, prone to stimming, am vulnerable to occasional sensory overload and less often meltdowns. I rarely tell people though because I don't want to be treated differently. But I'm unsure if the benefits outweigh the downsides.

Something that works for a lot of people is disclosing only exactly enough information to get you what you need out of a situation.

Which in the case of autism, often means talking about each issue separately and never mentioning autism itself. Because if you mention autism itself, you’re going to get a lot of reactions that will sidetrack people from the main point of whatever you’re trying to accomplish. Such as:

“But how could you be autistic? You can talk!”

“You must be so high functioning.”

“Your parents must be proud of you, you do so well.”

“I’d never have known you were autistic.” (Which they always mean as a compliment, don’t even ask.)

“But I saw an autistic child on TV and he was nothing like you.”

“My mother’s hairdresser’s nephew is autistic!”

“You’re not autistic, you just want attention.”

“You’re not autistic, you just want to get away with having bad social skills/being an asshole/etc.”

“Are you autistic, or do you just have Asperger’s?”

“Can you tell me all about autism?”

“What’s it like being autistic?”

“Can you tell me what my autistic daughter is thinking?”

Like… pretty much no matter how a disclosure of autism goes, it’s going to be a major thing for a lot of people. They’re going to have big reactions, both positive and negative. And even some of the positive reactions are really damn annoying.

So there’s a strategy a lot of autistic people have come up with, where you only disclose the bare minimum of information that needs to be disclosed, and you can disclose it without tying it to an autism diagnosis at all.

So you can say things like:

“I have sensitive hearing (may or may not call it hyperacusis, CAPD, etc.) and have trouble understanding your voice around too much background noise. Could we please do this in a more low-noise area, or turn the music off for ten minutes, or something?”

“I can’t always recognize faces. (May or may not want to formally mention prosopagnosia.) So if I don’t recognize you, it’s nothing personal. And I might have to ask you several times who you are before I know you. I wouldn’t recognize my own mother out of context, believe me!”

Many, many people have found that breaking autism into manageable pieces like that, and not referring to them as autism, get better responses, faster accommodations, and further questions asked, than if they say “I’m autistic” as part of that.

Someone familiar enough with autism might start guessing that you’re autistic after you’ve said a few of those things, and you might want to prepare for that kind of response. But actually, most people seem to respond well to a description of an individual trait, how that trait affects you, and what you need from them in order to be more successful with that trait. Especially if what you need isn’t really too hard.

So if your disclosure is related to needing someone to change what they’re doing and make it more accessible, people have had far more success disclosing in tiny pieces that don’t mention autism, than disclosing autism as a whole. Especially since with autism as a whole, people won’t just be surprised, they’ll have no idea how to accommodate you. Because autism is so big and so vague it could mean anything, and most people aren’t even familiar enough with it to know about sensory or motor issues.

And if you disclose to someone about autism in secret, understand it may not stay secret. I remember reading a heart-wrenching thing that happened to Donna Williams in university. She started disclosing to other students, one by one, privately. And without telling her, they went behind her back and talked to each other like “Did you hear Donna’s ‘secret’ yet? She’s going around 'secretly’ telling everyone she’s autistic!” And then they’d laugh at her about it. So she thought she was being really discreet, but the people she trusted were not trustworthy at all and thought nothing of mocking the entire idea that she was autistic.

Also one thing I had to learn is that anything you tell someone in confidence – if they have a significant other or an extremely close friendship, then by telling them, you’ve as good as told their boyfriend or their extremely close friend or whoever else is extremely close to them. It’s considered kind of a given, socially, that whatever you tell someone will be known to their spouse. So be prepared for that, it’s not something you can change. Most people need at least one person in their life that they have few to no secrets from, and if they have such a person, you’re not going to be able to get them not to tell that person.

OTOH sometimes gossip can work to your advantage. My mother used to do some political organizing at work, I think for better working conditions or something for the respiratory therapists. And she told me that if she wanted the entire office to know something without having to tell them all herself, all she had to do was find the biggest gossip in the entire office and tell that person. And then that person would of course tell everyone else.

So be aware of the personalities of who you disclose to, when possible. And the connections they might have to other people, so that you can be prepared for those other people to know whatever you tell the first person.

Like… I have a mentor. Like a real mentor, not the watered-down way the word has been made into. She’s like a second mother to me, and taught me everything I needed to learn to succeed in the adult world as an autistic and severely disabled person. Things my parents had no means to teach me because they lacked experience in this area. And I have very few secrets from her, because she’s the person I come to for advice about life. So if someone tells me something, especially something that may put me in a confusing situation, I’m going to go to her for advice. She would never tell anyone anything I tell her. But I will tell her things. I do have secrets from her, but they’re very few and far between.

So if someone tells me something, then there’s a good chance I might tell her. I don’t always, but I would have a hard time promising to have secrets from her. (Unless they dovetailed well with things I already don’t tell her, or just had no interest for telling her.)

Like a lot of autistic people, I had to learn about that consciously. Nonautistic people all know this stuff already. They already know that secrets aren’t really totally secrets around someone’s spouse, for instance, and they plan for that. Autistic people are more likely to not notice this and then get hurt when the secrets are revealed. Of course, what happened to Donna Williams was not inevitable, and was incredibly cruel. But it does happen. (Those people went on to claim that she was faking because she was slowly allowing herself things like telling people not to touch her, rather than putting up with touch, and they characterized this as “turning it off and on at will” and… things went downhill from there.)

There are a lot of both pros and cons to disclosure. But I think that in most situations, you don’t need to disclose. All you need to disclose are individual traits, and you don’t have to connect them back to autism unless you want to. Sometimes you can even get those traits to slide by as quirks of your personality rather than disabilities. Other times you may have to make it sound like you have all these little disabilities that don’t mean a whole lot individually but that do need slight accommodations. And I’ve known a lot of people who’ve had a lot of success with that method – even people who were very 'out’ as being autistic.

And believe it or not, I do have a choice as to whether to disclose. I don’t pass as normal, but I can pass as having an intellectual disability or a physical disability, easily. (I do have lots of physical disabilities. I don’t have an intellectual disability but I look like I do and people often assume it. Sometimes I let them keep on assuming it. It can be easier than explaining the truth.) Most people have trouble seeing a person as having more than one disability at a time, so people have been more than willing to attribute all my autistic traits to a physical disability, when they saw me in a wheelchair, for instance. I do look very autistic to anyone who knows what very autistic looks like, but lots of people don’t, and lots of people confuse it with mental illness or intellectual disability. If I walk into a mental health clubhouse, I’m generally pegged as schizophrenic because schizophrenic people have a lot in common with autistic people and are more likely to turn up at a mental health clubhouse than autistic people are. If I walk into a sheltered workshop, people will assume I’m either intellectually disabled or autistic, and generally “low functioning” either way. It’s all about expectations.

So I do have disclosure issues but they’re very different from someone who can pass as nondisabled. I can only pass as different kinds of disabled. And sometimes I allow myself to pass, other times I don’t. But the social dynamics of the situation are very different since I already register as “disabled” in most people’s minds.

I can’t decide whether or not passing is something you should be doing, and I can’t decide about disclosure for you.

I can say that even if you disclose, you don’t have to disclose for everyone. You can pick and choose, knowing of course that disclosing to someone is disclosing to their spouse. And you can pick and choose how to disclose, and how much to disclose. You aren’t obligated to tell anyone anything no matter how much they ask for information. You don’t have to educate anyone, even if they demand an education from you. Everything about you is yours to tell, or keep from, whoever you want. And if someone is so nosy that they absolutely won’t leave you alone, it’s okay to tell “white lies” to keep them from getting personal information. That’s something else I had to be explicitly taught.

I know a lot of LGBT people, for instance. Who are extremely out on the net, but not to their parents. Or who are out to family, but nobody else. You can pick and choose, as long as you take the right pre

But from my other followers? I think anon might do well to hear from other people who can pass, but have disclosed, or have not disclosed, and how they made their decisions, and why, and how the decisions have gone for them. And what strategies people have used to disclose, or not to disclose. Because I’m just one person, and as you’ve said, I don’t pass, so my issues are different in many ways. All I know about this is from watching friends of mine and what they have done.

Good luck with whatever you decide to do, and be aware that in many cases you can decide to do many different things with many different people. It doesn’t have to be all one decision, made all at once, done all in the same way.

Also I have a book, I don’t know how good it is on this because I’ve never made it through the whole thing, but:

http://www.amazon.com/Coming-Out-Asperger-Disclosure-Self-confidence/dp/1843102404

http://www.amazon.com/Ask-Tell-Self-Advocacy-Disclosure-Spectrum/dp/1931282587/

Both of those apparently deal with disclosure. I’ve read them, but I’ve never paid much attention to the parts about disclosure, so I don’t really know if those parts are worth getting the books for or not. I know that I found both books very uneven in terms of content, they’re anthologies and some parts are much better than others.

Anyway, good luck with whatever you decide to do. And any followers with advice: Please reblog this and give as much advice as you can, because there’s a lot I don’t know and anon could use all the help they can get.