Self-Disclosure: Best Method of Advocacy
I have recently realized that if you really want to make a social change when it comes to autism/Asperger's advocacy, you need to start with yourself and become more open to disclosing it about yourself. If you don't, then you perpetuate the stigma that is attached to it in a way, since not disclosing builds onto the already existing negative preconceptions related to admitting having a disability. Disclosing is a perfect way to promote awareness and showing that you accept it as part of your identity makes the condition more human, more organic as opposed to the stereotyped or a strictly clinical perception of it that many people have. I find that disclosing also often takes off the burden of trying to pass, or to attempt to remove your genuine characteristics in order to mold into something that has been defined to be the standard but is not necessarily the best way to be. There's also a correct way to disclose - not as an excuse, which also frames you in a negative light as a whiner or attention-seeker, but just talking about it in terms of how it is part of your identity, just as your culture may be part of your identity.
I find that the problem is that people don't ask why I act in certain ways, they just assume whatever they feel like assuming. Not asking also perpetuates the stigma and I have resolved to always ask other people I meet about their disability from now on, even though it might take a lot of guts to face what might come after asking and even though it might take lots of explaining after. In the past, I've tried not disclosing, but hinting at the fact that I am comfortable talking about autism and disability in general, and people still couldn't get the hints, unfortunately.
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I clearly have Asperger's and there's no hiding it. Even when I tried to act NT in the past, people could tell. So I think I'm going to quit covering it up with anyone and just mention it whenever I see it tying into a topic that I'm talking to another person about, even if it's someone I don't know very well. However, my personal opinion is that you should only disclose if you're diagnosed because if you are self-diagnosed, you might be wrong about it and might have another related condition instead (eg. ADHD, OCD, anxiety disorder).
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Leading a double life and loving it (but exhausted).
Likely ADHD instead of what I've been diagnosed with before.
I have had very good results from being open about my Asperger's as well!
Before I was diagnosed people treated me badly because I would try to force myself to act "normal" and it would backfire by causing me to have meltdowns.
Now I don't have to fake normal because I tell people why I stim, talk to myself, and don't make eye contact. I have started making neurotypical friends who accept me the way I am and I avoid people who don't.
I also have much less meltdowns than I used to, but all my friends have an emergency plan for just in case I do.
Yesterday was the 2nd anniversary of my Autism Spectrum diagnosis and I made a youtube about how much my life has improved!
http://youtu.be/I_9OnzmUvnU
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How dreary to be somebody! How public like a frog, To tell ones name the livelong day To an admiring bog!
-Emily Dickinson
My Youtube vlog: http://www.youtube.com/user/khawkgirl
Awesome! I watched your video and you seem to be very successful for your age. I haven't always had good results from being open about it, though. This summer, I have undergone a very difficult experience where I disclosed and my co-workers at one of my jobs did not treat me as an equal, shooting most of my ideas down, not trusting me, and being just plain rude. However, this has been just one negative experience among many, and there are positives to even this negative experience, because the workers have had to go through their own learning process to understand just what exactly my Asperger's entails. Some of them obviously did not have a lot of knowledge about it or experience with it, and I understood that it was very difficult for them to adapt to me, just as it was painful for me to try to get along with them.
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Leading a double life and loving it (but exhausted).
Likely ADHD instead of what I've been diagnosed with before.
While I'm in complete agreement of disclosure as the method of making the condition more human, the problem you run into is people who aren't willing to give up the clinical perception or the stereotype, so much so that they'll reject you having the condition (even if yours is official) on the grounds that you don't have one of the traits listed. How would one approach a scenario like that?
Don't forget that timing is also an important aspect of disclosure. Some people can take it on the first immediate conversation, whereas others might need time to warm up to people/the idea of a neurological difference in general.
The part in italics is key, and I honestly wish people would be more open to asking about it. Honestly, that's one thing that stops me from disclosing to everyone. It can make the difference between weirdo and human with real emotions and desires.
I clearly have Asperger's and there's no hiding it. Even when I tried to act NT in the past, people could tell. So I think I'm going to quit covering it up with anyone and just mention it whenever I see it tying into a topic that I'm talking to another person about, even if it's someone I don't know very well. However, my personal opinion is that you should only disclose if you're diagnosed because if you are self-diagnosed, you might be wrong about it and might have another related condition instead (eg. ADHD, OCD, anxiety disorder).
This part I really admire about you, MG. That is the sort of world I wish to acquire: disclosing without a stigma and being able to do things freely, without judgement. I may not reach it in my time, but I do hope the next generation of those on the spectrum reach this point.
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I don't seek to be popular
I seek to be well-known
If we find a friendship that's forged without masks
Then I have done my job
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Leading a double life and loving it (but exhausted).
Likely ADHD instead of what I've been diagnosed with before.
Hmm, I guess it depends on whether you feel like your condition really gets in the way of your ability to form relationships with other people or not. At one of the autism conferences I went to, there was a panel with adults on the spectrum, and one of the presenters on this panel said something that I thought was wise. He said, if you can pass perfectly and can lead a sustainable life while doing so, then you should not disclose at all. However, I think that if people have told you before that some things about you are very visibly AS and can make someone majorly uncomfortable, then disclosure will be beneficial. I've also had people doubt me, but they either did not know me very well i.e. did not see me in the right situations where my AS does show itself, or had major mental health issues of their own. Many people have told me they noticed it in me and questioned it but were afraid to ask, which is why I have decided to disclose and use it as an advocacy opportunity. I doubt I would disclose if my symptoms were less prominent than they are now, just because I wouldn't want to have people trying to disprove my diagnosis.
The bold part is where I sit personally, though if I'm pushed into a corner where I feel the need to disclose, I'll do it. Your viewpoint makes complete sense, and I applaud you for striking that balance enough to be comfortable with it. You know how I am in real life, and while most Aspies and close friends can pick up on it, others might not. I just figure I'll disclose when needed.
Yeah...that line drives me right up the wall! Every single time I like to think I do have some visibility of my symptoms and am able to mask to a certain extent, else I wouldn't be getting "you don't look like it" from people who aren't really that knowledgeable when it comes to the spectrum.
I agree. It also takes a lot of self-advocacy skills and practice. In my case, I find that people seem to pick up something that's off about me and then tend to not want to associate with me pretty quickly, so I find it beneficial to disclose as soon as I get a chance to. It's difficult, though, because you need to figure out when exactly you can insert it into the conversation and you need to have specific things you might say in certain scenarios ready in your head. But considering the goal behind it, I think it's worth it. Thanks for your response, you really made me think and that's good.
Anytime You know I'm always up for it IRL as well
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I don't seek to be popular
I seek to be well-known
If we find a friendship that's forged without masks
Then I have done my job
Guys, worrying about "But you don't look like it" might have been a valid concern pre Sandy Hook. Now-- put it on the back burner where it belongs. Honestly, if you have to get an ignorant response, that's the one you want.
If you're really going to go at this with full-- or even selective-- disclosure, what you'd really better be thinking about is the people who are going to hear that and make a whole raft of assumptions about you. And not ones like, "Oh, Borat!!"
Think about how you are going to deal with having people assume you are a sociopath and treat you accordingly.
I wish you all the luck in the world. I see you are young-- I don't want to make you bitter. In the back of my mind, I think sometimes that there is hope for the very young adult Aspie-- ones like yourselves who did not learn about your condition from reading everything you could find between 1995 and 2006. You're not yet beaten down and bitter, and it might not happen to you.
I have a little boy. He's five. He is beautiful. He is solid gold wrapped up in sunshine and tied with shooting star. I also very strongly suspect-- though no one will listen because I've been careful to kill all the classic stims and always downplay his weaknesses-- that he's on the spectrum.
For his sake, I hope you young folks can make a better world, and I'll try to restrain myself from dragging you down with my vitriol.
But, if you're serious about this advocacy business, I've got some advice for you.
Keep a lawyer on tap.
Keep a neurotypical-- or a few of them-- who knows you and cares for you and will speak in your stead. If they don't have a legal relationship to you, like parent or spouse, go see said lawyer and get them a power of attorney. I tried to say, "Antipsychotics aren't helping. They're actually killing me. Please stop this." I got labeled noncompliant and a troublemaker and they upped my dose until I couldn't think clearly enough to protest. My husband stepped in, waved his tie and batted his eye contact, and said, "No, really, this drug is killing her." It was gone instantly.
Most importantly, find a spouse if you really think you must, but don't have kids. I used to be a big believer in disclosure. After having people start proceedings to take my kids away a couple of times-- simply on the grounds of my disclosure, 'cause they couldn't find anything actually wrong-- I quit disclosing real quick. Having something precious to lose is a major game changer.
I really hope this works for you-- and for the next generation. But please understand that, whatever pretty ribbons people put on it, you are combat soldiers. Plan accordingly.
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"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
LovingTheAlien
Blue Jay
Joined: 19 Apr 2009
Age: 54
Gender: Female
Posts: 95
Location: Somewhere over the rainbow
Well, maybe it is not because of your AS they want to take your kids away. Maybe it is because of how you treat them. You wrote this in another thread:
Every time she caught me toe-walking, she called me over and looked at me sadly and told me that walking on their toes was something ret*d children did, and if I didn't want people to think I was ret*d and ship me off to live in an institution I'd better quit it right now.
By the time I was ready for school, I had learned to be careful about how I walked. Keeping my eyes on my feet was good training.
Every time I caught my son toe-walking, I called him over and told him walking on the toes is something ret*d children do, then I sent him to sit in the corner for making fun of ret*d children. It took about two months for him to quit walking on his toes.
Ditto hand-flapping, spinning, sucking his sleeves. For a while he started picking up random things and fooling with them. He broke a few of his sister's headbands. I picked up one of his robots, fooled with it, then snapped it in half and screamed, "I didn't mean to!"
No more problems.
No bills for the insurance.
No missed school to get fitted for orthotics.
We now have an unobtrusive batch of stims.
It doesn't take him long to forget the hurt feelings and start smiling again.
In my opinion this is child abuse! Maybe that it the real reason they want to take your kids away. Stop blaming it on AS and start looking at yourself. You are heartless and cruel and you will end up with a seriously emotionally damaged kid, if you don't stop now.
Nope. They didn't see any of that. It didn't exist then. All they ever saw was a woman having a panic attack-- shaking and stumbling over her words, not even crying and screaming, just looking upset-- in a public place. I tried to explain that it wasn't a big deal, that it was just something that happens sometimes.
Instant, "You must be a sociopath. Your visible discomfort is hideous, and there must be so much worse." At that time, no, that was as bad as it got.
There was no other reason; and it stopped as soon as my NT husband got involved.
Treating my kids like dirt (incidentally, I agree with you that the way I raise them now is emotional abuse-- I hate treating them in a way I did not like being treated; had I realized that this was what was necessary in a world that recognizes only one kind of "acceptable" instead of thinking that acceptance of relatively minor difference had grown since the '80s and the people that treated me that way as a kid were just psycho, believe me, I wouldn't have had kids) in the interest of making sure everything looks perfect on the outside??
Something that's happened since then. Something that started then, actually, because I realized that looking normal was more important than anything, was, in fact, the very definition of "functioning well" in the majority opinion.
Something you don't seem to understand, that you need to. "Functioning" isn't defined as your ability to get through the day with a maximum amount of achievement and a minimum amount of misery. "Functioning" isn't about how you feel. The main component of "functioning" is your ability to get through the day without anyone else noticing that there is anything different about you. "Function" is about the convenience and comfort of the NT total strangers you run into-- NOT about what works for you or helps you work best, regardless of how harmless it is.
Treating my kids like s**t behind the scenes, so that we look perfect in public?? Something I hate, that I've come to the conclusion is simply necessary to protect us. something I've taken from the NT moms I know-- that's how most parents manage to speak to their kids sweetly and get instant compliance.
Frankly, if you are in the slightest bit nonstandard, the WORLD is abusive. Verbally, emotionall, occasionally even physically and sexually abusive. That is the reality you have to survive in-- not one of acceptance, or even tolerance. Diversity, if it's more than literally skin-deep, is something modern society pays lip service to (and sometimes, not even that).
Example: My son has always been sensitive. He's been a crier since toddlerhood. He is well-behaved other than being talkative, but he is a crier. I have not yet been able to bring myself to punish a child for crying; tears are something that shoud be either comforted or ignored. He goes to kindergarten and cries when he gets very frustrated, instead of shrugging it off. He cries when he gets teased. He's not a screamer-- more of a pathetic sniffler. Teacher's response? "[The boy] disrupts our day with his tears and makes the other children uncomfortable. He causes them to mistreat him."
I am typing that straight off her last comment sheet.
I'd love to go back to being something else-- a happy family that is sometimes annoying, sometimes a little strange, sometimes raises an eyebrow. I grieve the way things have to be now every day.
But the fact is that, unless kids are getting beaten black and blue, we seem are a lot safer looking perfect on top and being rotten underneath than having scratches, dents, and dings on the surface with a sound structure that actually works for us underneath. The only way we can go back to being us and being happy, is if we can find someplace where we can be self-reliant enough to isolate ourselves about 75% of the time.
I would love to agree with you, to think like you, to do like you. I used to; from about 1998 or 1999 to 2010, that was how I approaced existence. I liked life a lot better than, and so did my family.
Since I started treating them like dirt, pounding the message that there is "Like everyone else" and "Unacceptable," and that it's a value judgment against the person, not a problem with a behavior??
We get treated better now, have fewer problems in the outside world.
Sad fact you'd better plan to deal with if you are going down the self-advocacy route. Sorry to poop on the party, but-- I took it on with a lot of idealism and very little experience. Every time I got kicked, I told myself, "Well, that person's an ass. Don't let them define your attitude."
Don't make the same mistake. The world is full of asses, and quite a few of them occupy positions of petty authority. Go the self-advocacy route if it suits you-- you are, as far as I'm concerned, heroes every bit as much as folks who go marching off with guns to fight for something-or-other. But HAVE NO DELUSIONS about the battle you are taking on in choosing that.
If you are going to defy the established order, you are going to war. Think as if you are at war-- if you are trying to change someone's point of view, they are by definition not your friend. Live like you are at war-- don't bring innocent people that multiply your vulnerability into harms' way. Do this on the inside-- on the outside you never let it show, never behave on the surface as if you are at war.
On the inside, never forget it.
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"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
I am a NT mom and my two year old has been diagnosed with autism. I used to battle with discloser. It is hard because you don't want people to treat you different or judge you and it can be scary. But I truly believe that most people, given the chance will be supportive. I also don't believe that being autistic is something to be ashamed of, or something to be cured. I feel that hiding his diagnosis plays into this fear rhetoric that is so often displayed in the media. I am proud of my boy and want the whole world to know. I want him to be proud of who he is and grow up to have the confidence to be himself. We will only be happy if we are living our authentic lives, true to ourselves.
@ Krazykat - I loved your video. I am so happy for you!
I'd rather be at war with the rest of the world than at war with my kids. Really, I have been at war with the world for the 13 years I've been a mom, without taking autism into account at all, because it's what a mom has to do. I don't disclose for the same reason you mentioned, Buyer - custody - but I'll never take the road you've chosen. What you describe goes beyond an attempt to help your son get along in the world: it's obvious you are taking your own anger at society, your own suffering, out on him. You've internalized the hatred and now you turn it on your child, and when you talk about it here it looks like a cry for help, a "look what I've been forced to do!", but you haven't been forced and your excuses are bunk. It obviously isn't a rational choice at all, but an emotional reaction.
BuyerBeware wrote:
I found a great cure for toe-walking. My grandma taught it to me when I was little.
Every time she caught me toe-walking, she called me over and looked at me sadly and told me that walking on their toes was something ret*d children did, and if I didn't want people to think I was ret*d and ship me off to live in an institution I'd better quit it right now.
By the time I was ready for school, I had learned to be careful about how I walked. Keeping my eyes on my feet was good training.
Every time I caught my son toe-walking, I called him over and told him walking on the toes is something ret*d children do, then I sent him to sit in the corner for making fun of ret*d children. It took about two months for him to quit walking on his toes.
Ditto hand-flapping, spinning, sucking his sleeves. For a while he started picking up random things and fooling with them. He broke a few of his sister's headbands. I picked up one of his robots, fooled with it, then snapped it in half and screamed, "I didn't mean to!"
No more problems.
No bills for the insurance.
No missed school to get fitted for orthotics.
We now have an unobtrusive batch of stims.
It doesn't take him long to forget the hurt feelings and start smiling again.
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No, no! Buyerbeware, please, don't do this. I was able to pass well or so I thought, because I had my odd behaviours and stims beaten out of me by the woman who spawned me.
Meltdowns, breakdowns and more (big, cumulative debilitating) meltdowns, the odd suicide attempt and a confused and fragmented existence later, all down to this, and not knowing or understanding my condition.
Teach him to hide it but explain why, by appealing to his positive motivations, not fear. He's got his whole life ahead of him to experience fear, and believe me, he's going to. All you're doing is using up strength he'll need later.
Me, since I came to the realisation, I disclose at work. Up front, at first meeting. "Hi, I'm Bill, btw, I'm Spectrum, so if I occasionally seem odd, it's probably that. If I freak you out please don't be afraid to say something, and if you have any questions, don't be afraid to ask." I'm lucky, I found a line of work that (a) suits my traits, and (b) people are obliged to pay attention to what I tell them.
Socially, I'll disclose as soon as I'm" comfortable". My boss and my underlings are all aware, but everyone has too much respect for my abilities to give me a hard time. I won't deny it can be hard work, but I've changed opinions and opened minds on occasion.
My first objective for my son is survival of his school years, not the NT definition of success. He can learn what he wants when he's a mind to. I've watched his development and experiences at school parallel mine and am learning, learning, trying to think up positive ways of discussing stuff with him and presenting helpful stuff that he will try because he trusts me, not because he fears me. I won't bore you with the tedious details of my childhood, but there has never been a parental bond to the woman my father married. It wasn't me that severed it.
Sorry, set me off a bit there, Grrrr!
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Aspie Score 173/200. NT score 43/200. AQ 37.
BAP: 108% Aloof. 117% Rigid. 112% Pragmatic.
Conformity sucks anyway.