Disclosure: My Dilemma

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Hello,

I've posted this in Members Only due to a possibility of stating very strong/irrational views. Since I wasn't getting replies, I've decided to post this here. It's one of those things I get stuck on and really feel like I need some feedback on. Thanks!

I feel like I need to figure out once and for all how much I could possibly disclose about autism and my relationship to it. With the abundance of online media and the free access that everyone has to some of my personal information, the question of whether to disclose or not to disclose this feels really pressing, considering that I am also becoming increasingly involved in the autistic community and that autism is my primary special interest. I have always covered up my autism business with professors and other non-autistics by referring to my autism pursuits as "secret business" and referring to autism groups as "secret society". While this is a harmless way to refer to it, sometimes I wonder whether I should disclose, seeing that some people I know do it so freely. Part of me wants to do so in order to educate others better about autism. But I have a few personal hangups and fears about it. I've always wondered if they were rational... So now I'm asking you for your opinion as to whether they are or not.

1. There are people out there who claim to be Asperger's and promote themselves as being so while their difficulties are very different from mine. It bothers me immensely whenever there are people out there who say things like "Asperger's is nothing but a personality type", "it's being overdiagnosed", and "it's a fake condition". I am afraid that when people who are not very representative of Asperger's symptom-wise, especially women, put themselves out there like that, that there will be more people out there questioning the validity of the condition. I am very keen on being taken seriously and don't want to present otherwise. On a related note, I was sent this study by a disabilities counsellor who runs the ASD support group at my university. While the goal of this study was to find out about the quality of life of people on the spectrum in general, it was interested in only recruiting males. This makes me wonder if perhaps the researcher conducting the study may well be under the conviction that women do not represent true AS. Perhaps I should write to him later on and ask *fear of my message being unanswered kicks in*.

2. There are some people who seem to think that social anxiety, unwillingness to be social, and being able to talk in detail are all inherent components of Asperger's. I don't exhibit the former two traits at all. With the third one, there are some people who think that I do focus on details a lot and talk about them, but some don't. I speak very slowly, in a somewhat monotone/stilted voice, and it's often hard for me to talk in detail unless I have thought up what I was going to say in advance. In addition, sometimes I say things about myself to people just to probe their reactions. When they say stuff like "everyone does this sometimes" or "this is normal", I become even more hesitant to disclose. People close to me have told me in the past that these things are said by others just to make me feel better about myself, but somehow I find it hard to believe that people would really say something that is different from what they really think.

3. I am hesitant about having my professors find out about my Asperger's because I have heard stories about people, and actually have met people, who have AS but have managed to get through university very well without accommodations. I am always afraid that if I disclose to a professor, the question will be "is this what you're getting the accommodations for?". I feel like I would then need to lie and say that I also have a learning disability (which I suspect I may have, but I have not been officially tested and the process for the application is so tedious that I feel overwhelmed just thinking about it). However, I feel like the accommodations were crucial for me at times in order to do my best while working really hard, but I don't want to be perceived as someone who just takes advantage of the accommodations. I have often requested specific accommodations in the past, such as opting myself out of group work, again successfully without disclosing the specific label. For some reason, saying that I have Asperger's feels like I am putting myself down in front of the other person. It feels like I'm making excuses. I don't know where this feeling comes from, but I suspect it's again due to having seen numerous instances of people not taking this diagnosis seriously, especially online.

Do you think my concerns are well-founded, or am I worrying about nothing? Perhaps I'm just overthinking it...

I'm one of those people who is completely open about my Asperger's. I've posted on google+ explicitly stating it and am starting a blog that I'm trying to get people I know IRL to read.

While this might make it harder. I find this to actually just be making it even more important for you to disclose. You want people to have an idea of what you are like when you do disclose rather than having people having wrong views.

To me this more says that simply "I have Asperger's" isn't enough, and "I have Asperger's, its an autistic spectrum disorder which in my particular cases causes blah,blah,blah. <some sentence that uses disability or disabled in it>" might be better.



Only recruiting males is really silly. We're not somehow now autistic because we're female.


People are silly.



This is more people not understanding that you're talking about a different order of magnitude than anything else I'm guessing. People jump at loud noises that's different from any of my hypersensitivities, its a completely different scale that I'm working on.


Getting through university without accommodations doesn't mean that they'd not have done better with accommodations. Also, people's requirements are different. I got through college without accommodations, it wasn't because I didn't need them, it was because they were unwilling to give me the ones I needed to let me do my best.



I understand why your fears are there. I think that your fears are exaggerating reality but based on reality.

General suggestions:
-I've found disclosure in writing is easier than disclosure verbally. It also allows for more details to be listed with it which might help ease your fears.
-Partial disclosure is an option. You don't need to let everyone know, you can take it on a case by case basis and just start with what are the situations that will either be hardest or more meaningful and start there. (Hardest to try to break the tension)

Thanks. That was really helpful feedback. I wonder, though, about disclosing online like that. I wonder if some people might get too creeped out by someone who is out in the open like that. I try to be an open yet accessible person; in other words, I don't want to repulse anyone by being too open about my diagnosis and my special interest. I am still debating as to whether it is a good idea to put my list of favourite books, movies, etc. (which are pretty much all about autism) out in the open on Facebook. Equally, I don't know how far I can safely go disclosing my special interest in real life, especially in front of other aspies. I think I may have come on too strong to some aspies in the past and ever since, I have been holding back on my degree of openness about my interest. I don't know, however, whether the reaction was the way it was because of the nature of the interest itself or because of something else that might not even be personal.

Maybe I'm worrying too much and if I am more open, I could pull it off and be seen as a more interesting person in the long run. But with the doubts running through my head, I'm not sure...

I hope I didn't scare anyone off. Or perhaps this thread is just too long to read.

Not scared off at all!

Yes, a lot of people promote themselves, or talk about AS, concentrating on certain symptoms. But Autism is indeed a spectrum, and not everyone exhibits every symptom. So despite what many people say, there is no one size fits all AS. This does a great disservice to the AS community as a whole by creating stereotypes that have having NTs question if we are "faking" when we don't exhibit all the stereotypical symptoms.

This "AS affects males" thing is one of the stereotypes we need to fight against (I'm male BTW).

Well, to me the big thing is the reason for your disclosure. I don't like when people disclose their AS as a "look at me I have AS" bid for attention or preferential treatment. But, if it affects your school/work/etc., then I feel it may be important to tell people so they can understand you and how you react in different situations. A good example is my son, who is in his first year at University. He has general anxiety disorder and he finds it very difficult to participate in class discussions. He told his professors because he didn't want them to think his non-participation meant he didn't care and that he would be graded lower because of it. They were all very understanding about it.

I have disclosed in the past where I thought it was necessary and had no problem doing so.

With my previous concerns answered by the first poster, my biggest concern now is that I am often scared to talk about my special interest, autism, because I am afraid that it would lead to disclosure. I am also afraid that the fact that the nature of my special interest will scare off other people in the ASD group at my university. The same thing applies to me sharing my special interest on social networking websites. While I really want to be able to share more freely, I get paranoid about random people finding information about me. But perhaps if I do share, it would be for the better. I really don't know.

Disclaimer: The following is written from the revolving closet. And I haven't read anything past your first post.

The diversity of autistics is not well represented within academia, autism services, or popular media. A greater visibility – one of autistic diversity – needs to be brought to the forefront. Challenging people and changing what it means is part of this process.

Disclosure is variable by nature. And all situations of disclosure are going to be different. They may be positive or negative, or somewhere in between. Black/white / one/other answers are not natural. The irony here is it seems that academics, more so than autistics, wish to peg people into pre-shaped slots, we might just struggle with this more...

You have never shown yourself to be the sort to unfairly take advantage of any situation or represent yourself other than who you - if there is anything that has struck me about you it is that your nature always shines through. So, I wouldn’t worry about what others think. If you’re worst fear is that they may think that you are presenting yourself dishonestly or think that you may be taking advantage, their skepticism will surely be squashed by your truth. If you need the accommodation don’t make your life more difficult than it needs to be, it is there for a reason.

It is disappointing to hear that study is male only. It is a common academic bias, I do believe, the concept of the male standard. If those doing the study are cross-referencing data with data from typical studies those studies are most likely male only as well. It is a sad fact and one that needs to change. Did you engage and ask if they had a survey for females or people who may identify otherwise? Sometimes questions / letters aren’t answered but it is rarely the case that they go unread. It sounds like it is more important that the academic get feedback and perhaps some food for thought.

And what is true AS? It seems to be something we all struggle with, on the spectrum and not. Academics test us in labs and ignore us in the wild, friends and family say it isn’t so because we are who we are and we’re not what they see on the evening news, strangers and those unawares seem to pass by without carrying about anyone or anything, we even start to question each other because one has a monotone voice and one exaggerated variable intonations.

It seems the only thing one can do is know thyself and more forward, as the ancient Greeks might say. Comfort zones are no place to make static, they must be challenged and along the way we might just discover something new we did not expect to find. Nature. Study. Practice.

What has been your experience with disclosing thus far? Have you done so at all within the wider community?

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Sounds like a public/private boundary issue more about social networking sites and the internet. The lines of demarcation are always blurred. Blindly the uncertain souls asks to continue.

How do you think talking about autism will alienate your university group?

Something has occurred to me about telling that one has AS.

Is it a good idea to let people know one has a tendency to be naive and gullible?

On one hand, people are going to view you as more of a target that's easy to take advantage of.

On the other hand, people are going to watch out for you more, especially if they know of you having issues with that in the past.

In general, I don't know. I know in my case it's been more positive than negative because people are willing to try to protect me. If people aren't interested in protecting you its harder. (This is one area where being female is both an advantage and a disadvantage. It's very common for females on the spectrum to be abused, yet females also are more likely to be protected than males.)

I think the same way that I have seen people, including someone we both know, refuse to post on some of my online stuff in a fear of outing themselves because I was very much out about it. I feel like some people might not want to be in a closer relationship with me/become associated with me if I become even more out about it than I am now because they are not comfortable with disclosing themselves. I know that it's their problem, but I do take it personally, especially as people often tend to do such things without providing a clear explanation.

When I've disclosed in the past, the reception has been very positive but I've been always very careful about to whom I disclose. I think I do become unnecessarily secretive about it sometimes. Perhaps it isn't worth the thought I've had to put into it in the past and I should just do it. Someone in a Facebook comment to my status seemed to hint at it being an excuse in the past, which was unpleasant and made me even more wary of disclosing.

To me, it's really about the freedom of being open about everything about myself to anyone so that I wouldn't have to think as much about what I am saying. I just want to be able to enjoy sharing more things about myself, not having to cover up every single thing that's personal because it inevitably links back to autism.

That is another thing I have actually considered. Having to endure the consequences can actually then be a test of strength. In some situations, there are people who could protect me, but in other situations, like my university residence, the protection does not feel as solid. If something happens, having to cope with the consequences would only pose an extra chore - not a welcomed thing when you already have tons on your plate.

But if other females go against you, gender no longer becomes an advantage...

Its exactly this issue of "protecting" that bothers me the most about coming out completely. My life is sheltered as it is and having my family and co-workers making decisions for me and trying to limit me into a box of their own creation - even more so than now - is not a position I want to undertake. It's Autonomy I'm after. Having other people distorted perception of what is best for me, what they need, without taking into consideration what actually might be best for me, what i need.

Having to constantly fight for one's rights is something everyone, on the spectrum or off, goes through on a daily basis, even straight white males, but the more minorities and especially the more invisible and unfamiliar minorities one layers in their existence means one has to work harder and harder to battle the social status quo our society works so hard to maintain. Life is hard enough working with people to maintain respect and equality, add to that as a woman, and as queer, and as autistic and with PTSD provoked OCD, without a degree and most likely with a learning disability well... is it better to live out? Probably. Is it easier? Perhaps more healthy.

The most important thing is never do something before one is ready, but one has to take a leap of faith sometime.

Yes, out by association. I see where you are going with this now. It is a tough decision. It’s funny that you bring this up today as Dorothy Snarker had a fantastic blog article this morning about outing people. (Even though it is queer and glee centric it is an interesting read keeping in mind of disclosure and the spectrum. http://dorothysurrenders.blogspot.com/2 ... world.html).

People are often unaware of the full scope as to why they do things. Giving an explanation isn’t always possible and we may think we know the reasons we do things, but do not. This is where, no matter how much it drives us crazy, the best and perhaps hardest thing to learn is allow the unknown variable.

Association often provides more personal paranoia than actual outing. But this can be just as torturous. We all follow the tortuous path anyways, it’s called life. Much to our chagrin we all must face our fears.

As for being a protected female... don't even get met started... also don't get me started on gender-centric competition. *double grrr*

Oh, I wasn't assuming other females are the ones doing the protecting. For me its males who are doing that.



I understand that fear. For me its more people watching out and giving me information to let me make more informed decisions rather than making decisions for me, but that's something that could easily be a problem.