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btbnnyr
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12 Dec 2014, 8:00 pm

It is probably a good idea to tell the people you work with the most, if they are really normal NTs who need a context for your different behaviors. Maybe you can bring it up when you talk about research or something autism-related in general.

What kind of research are you doing in your lab? I am curious.


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MathGirl
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12 Dec 2014, 9:19 pm

btbnnyr wrote:
It is probably a good idea to tell the people you work with the most, if they are really normal NTs who need a context for your different behaviors. Maybe you can bring it up when you talk about research or something autism-related in general.

What kind of research are you doing in your lab? I am curious.
True, I'd tell those I work with the most. I'm thinking, and tell me if this is a bad idea, I'd also tell people at the party depending on the context of the situation. So if, say, I went to the party and were just a total social misfit, then I may disclose to everyone. Because I haven't started working there yet (I will start in January), I won't be able to pinpoint these people yet. Also, my role will be sporadic actually, in that I will often be asked to do random different things for different people depending on where they need help.

As for the research we're doing: I am not sure if I should disclose the specifics here, as I would like to maintain complete confidentiality on this forum. I am literally typing in two keywords and my general region and the name of the researcher is coming up. It's a very prominent researcher in the field. The very general areas of research are linguistics and cognition (neural and behavioural processes) across all ages.


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Norny
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12 Dec 2014, 9:39 pm

A lack of body language and all that stuff doesn't matter to me, though that could be because I'm introverted (small-talk is more an extrovert thing than an NT thing as well) and have visual-spatial deficiencies. I can't gauge my personal understanding of body language.

Admittedly, the emotional side of a relationship is important to me, hence why I wouldn't be friends with only autistic people. I wouldn't by choice be friends with only NTs either (and I'm not), because I like the serious discussions I can have with autistic people. One of my best friends is autistic, and he doesn't change himself, other than to prevent his stimming in public and trying to express more interest than he has at times with social reciprocation.

So to me it doesn't matter, nor to the friends that I have, and most others that I have known. The younger generations tend to be more accepting of difference due to all the campaigns growing up.


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MathGirl
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12 Dec 2014, 9:57 pm

Norny wrote:
One of my best friends is autistic, and he doesn't change himself, other than to prevent his stimming in public and trying to express more interest than he has at times with social reciprocation.
If, hypothetically, he didn't totally hide his stims in public (unless they involved touching other people or making noises in a quiet environment) and if he didn't push himself to be more socially reciprocal than he naturally is, do you think his group of friends would still accept him and fully include him?

And yeah, emotional reciprocation is not really an ASD thing, lol.


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Norny
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12 Dec 2014, 10:57 pm

MathGirl wrote:
Norny wrote:
One of my best friends is autistic, and he doesn't change himself, other than to prevent his stimming in public and trying to express more interest than he has at times with social reciprocation.
If, hypothetically, he didn't totally hide his stims in public (unless they involved touching other people or making noises in a quiet environment) and if he didn't push himself to be more socially reciprocal than he naturally is, do you think his group of friends would still accept him and fully include him?

And yeah, emotional reciprocation is not really an ASD thing, lol.


Well his group of friends consists of our other best friend, another mutual friend and myself. We're pretty much a group of 4 and all have medical diagnoses with the exception of one, so I may be a little biased here.

His stimming in public doesn't matter to me, as I don't really have concern for group reputation and whatnot from others. He stims around just me at times but still rarely, because he has described the process of hiding to be like no longer needing training wheels to ride a bike - that is, you just do it; it's like muscle memory. I actually like it when he stims because from my point of view, that means he is less anxious and feels free to be his natural self around me.

For some context, he was diagnosed with classic autism when he was very young (2 or 3) and was non-verbal for 6-7 years. He 'bloomed' (his words, quoted from a professional) out of severe autism and is now essentially NT, only with mild autistic characteristics, such as special interests, a lack of social/emotional reciprocation, strong resistance to immediate change and slight visual hypersensitivity. He doesn't have obvious rituals/routines, aside from a vague, general routine where he must mentally prepare himself for change the coming day if it involves an environment he has not been in before. He received extensive treatment/support (i.e. ENT specialist) for this transformation to occur.

As for the social reciprocity, yes it does hurt me that he never wants to initiate conversation or really even listen to anything I have to say unless it initially peaks his interest, and it frustrates me that I always have to make the plans. In general I am the one who makes the friendship work (a difficult task for me), but he has made several attempts himself in the past. The point you've raised here is actually interesting, because if he never made an effort, I'm not sure I would want to be friends with him, because there would be no point to the relationship. He has actually told me that if I disappeared, he wouldn't notice/care, despite how close we are meant to be.

The issue of his social reciprocation is far more complicated than I have given light to here, though. We have had many bonding moments together and I know that he cares. I suspect this his severe alexithymia is actually what causes him to think he would not care should I disappear. I actually had to explain to him that what he described to me was empathy because he was told that he did not possess any in the past, and believed that because it could not discern it for himself. I've had to sort through many social aspects of himself via massive conversations like this, and that's part of the reason I joined this forum - it helped me to understand and explain these things to him.


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btbnnyr
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12 Dec 2014, 11:07 pm

I don't know if it's a good idea to tell people at the party, before you have started working with them.
I would rather they know me as me first, before they know me as autistic, if they need to know at all.
I would wait until you start working in the lab, get to know some people, and if you want someone to know, tell them one-on-one.
Does your research adviser know?
That is the first person I would tell, if they don't know yet.


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13 Dec 2014, 2:39 am

Norny wrote:
Well his group of friends consists of our other best friend, another mutual friend and myself. We're pretty much a group of 4 and all have medical diagnoses with the exception of one, so I may be a little biased here.

His stimming in public doesn't matter to me, as I don't really have concern for group reputation and whatnot from others. He stims around just me at times but still rarely, because he has described the process of hiding to be like no longer needing training wheels to ride a bike - that is, you just do it; it's like muscle memory. I actually like it when he stims because from my point of view, that means he is less anxious and feels free to be his natural self around me.

For some context, he was diagnosed with classic autism when he was very young (2 or 3) and was non-verbal for 6-7 years. He 'bloomed' (his words, quoted from a professional) out of severe autism and is now essentially NT, only with mild autistic characteristics, such as special interests, a lack of social/emotional reciprocation, strong resistance to immediate change and slight visual hypersensitivity. He doesn't have obvious rituals/routines, aside from a vague, general routine where he must mentally prepare himself for change the coming day if it involves an environment he has not been in before. He received extensive treatment/support (i.e. ENT specialist) for this transformation to occur.

As for the social reciprocity, yes it does hurt me that he never wants to initiate conversation or really even listen to anything I have to say unless it initially peaks his interest, and it frustrates me that I always have to make the plans. In general I am the one who makes the friendship work (a difficult task for me), but he has made several attempts himself in the past. The point you've raised here is actually interesting, because if he never made an effort, I'm not sure I would want to be friends with him, because there would be no point to the relationship. He has actually told me that if I disappeared, he wouldn't notice/care, despite how close we are meant to be.

The issue of his social reciprocation is far more complicated than I have given light to here, though. We have had many bonding moments together and I know that he cares. I suspect this his severe alexithymia is actually what causes him to think he would not care should I disappear. I actually had to explain to him that what he described to me was empathy because he was told that he did not possess any in the past, and believed that because it could not discern it for himself. I've had to sort through many social aspects of himself via massive conversations like this, and that's part of the reason I joined this forum - it helped me to understand and explain these things to him.
Thanks for the detailed response. From my experience, friends having a medical diagnosis makes a HUGE difference in helping them relate to others with no matter what diagnosis. I have some friends who don't have ASD but have something else and I find they can get on "my level" much more easily somehow.

It also seems like he hasn't gotten a lot of emotional regulation guidance through his intervention. Seems like you are a very positive influence in his life and are helping him a lot with learning about his feelings. It might also be a problem in predicting what would happen in the future; with feelings, it's even more abstract than predicting tangible events. I am glad you did not interpret it literally. Now, I really wonder if NTs who don't have any medical labels or significant life history being around people with disabilities would be capable of such acceptance...

btbnnyr wrote:
I don't know if it's a good idea to tell people at the party, before you have started working with them.
I would rather they know me as me first, before they know me as autistic, if they need to know at all.
I would wait until you start working in the lab, get to know some people, and if you want someone to know, tell them one-on-one.
Does your research adviser know?
That is the first person I would tell, if they don't know yet.
Ok, I really wonder now why you think so. To me, I don't see why I shouldn't disclose ASD if I may disclose some other aspect of my life (e.g. I work part-time, I'm good at maths, I am messy, I'm very outgoing, I am from Country X, etc.). I think, since it's a party, people will say stuff like that about themselves. I almost think I would probably disclose it in passing while talking about a relevant topic, or to laugh off some awkward behaviour by saying something like "how very autistic of me". Just to give some background, I am a classic representative of the "active-but-odd" subtype; I am typically quite talkative and energetic and have a lot to say. However, according to others, my body language and eye contact are very noticeably different, I get hyper-focused on subjects in conversation, go on tangents, talk in a lot of detail, and interpret everything very logically and literally. I only get certain types of humor and don't really "emotionally bond" with people but I do bond through subjects of interest.

What do you think of that? Do you think I should just explain my individual characteristics instead of disclosing the label, then? I prefer disclosing the label sometimes because I don't always figure out when people are getting put off by my behaviour.

My supervisor doesn't know because I didn't disclose in the interview (didn't think it was relevant).


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btbnnyr
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13 Dec 2014, 3:18 am

I personally haven't felt a need to eggsplain my individual characteristics or autism diagnosis, so it seems unnatural to me to tell people at a party that I am autistic or eggsplain my traits. I am who I am, and I act how I do, and it's unnatural to me to eggsplain these to others, but perhaps you are different and find it natural to do so, I am speaking from my perspective of how I would proceed in this situation. Some of the people I collaborate with on autism research, I have no idea if they know I am autistic through the rumor mill, and it has not been needed to do research together. I feel even less need to eggsplain my traits in social settings. I don't feel a need for people to know the autism label in relation to me, but I don't mind if they know. In most cases, I don't know if they know or not, as they don't tell me or ask me.

I feel that it is necessary for my professor to know, as we work together closely on research projects, and I want to put the full force of my brain into the projects, and I want him to know where my hunches come from, if they are based on my cognition/perception that are affected by autism. This is a situation in which knowing is relevant to the research. For other people with whom I work less closely, knowing is not that relevant, so I didn't tell them.


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