Comments/Tangential Topics/Etc.

[renaeden]

Sophist, about your last post, Did you feel like getting up and talking to those people what autism really is? Or letting people know that "oohs" an awwws" don't really help anyone? I guess in a PC way?

I think I would rather know a bit about the condition that the money is being raised for than showing false sympathy over something I know little about.

[Sophist]

Well, it was difficult to have a conversation with more than just the two people at my sides at the table, which were JNSQ and that other woman I mentioned.

To be honest, I would've been hesitant to start in on those people because, given the organization (FEAT), I would've expected some of them to give me the "Asperger's is not the same as autism, autism truly suffers" thing. Especially if I didn't have enough time to have a more extended conversation with them, break down mental barriers, that sort of thing.

But believe me, I certainly wanted to, heh.

[adhocisadirtyword]

Sophist, I wonder if you'll find that once you and JNSQ spend all or much more of your time together (i.e live together), that it will become a little more noticeable. My husband calms me down as well - has that Valium effect for me too - but he does also see moments in which the world is just too much for me, which are rare and few and far between. He probably wouldn't see those as often if we weren't together all the time.

I will say I've never had a person who didn't know a LOT about the spectrum ever actually believe or think that I could be on the spectrum until I explain further. I socialize extremely well compared to how I did growing up and have learned a lot about myself and socializing to make this possible. But there is a price to pay for all day meetings and keeping up these appearances, and my family does see that price.

Right now - we're trying to figure out a way for one of us to stay home after the baby is born. It will most likely be him just due to salary and economy issues. I am selfishly wishing it could be me though because I do see that the social aspects of the work that I do are slowly starting to drain me. I can probably keep this up for another 10 years, but I don't see lasting to retirement age. And I do wonder if I'm doing any permanent damage neurologically. In 10 years, I may be a very different person.

Hopefully you won't have the same experience -- I imagine that working in lab and research settings is much less draining socially than the work that I do. Not trying to brag or put down your work in any way -- I just think that this is likely the case. If a scientist was interrupted half as much as I was or had half as many meetings, I don't think we would ever have any scientific breakthroughs. As it is, I wonder how I get anything done with the people constantly at my desk.

[Sophist]

I can only imagine he would see more of my less-kept-together side if and when we live together. But then at the same time, he's so aspie that just by sheer contrast he seems to have worse problems in many of these areas than I do. Not sure.

And, yeah, research I think will be a lot less draining than business. At least for now, there's always a time I can be alone in my office just reading and working. So the times when I have to be more social, I can handle and often enjoy. If I were around people the entire day everyday, I would very quickly reach my limit and my stress would become noticeable.

He thinks I'm more extroverted. I do have the capability to be funny and enjoyable and even entertaining-- to seem like it comes effortlessly. But I'm definitely an introverted person: it takes energy and concentration for me to be around people (except JNSQ). People usually drain me. But then doing something well isn't necessarily an indication of how much energy it took to do it in the first place. I think JNSQ is mistakenly assuming it doesn't take too much energy for me to be social as I am. But it does. At the end of a day when I didn't have any people breaks, I can definitely feel it.

Although frequently he also misinterprets my willingness to talk to people as being extroverted. I'm definitely a talker; I'm a TMI queen, hehe. But talking has rarely taken much energy for me. And I'm also the type who tells both shallow and intimate details equally readily to whomever. I'll tell my life story to my best friend or a total stranger at the bus stop; to me, it's just imparting information. The words themselves, the information, are not really "sharing" for me, not really being social. But for JNSQ, who's not a talker at all, finds sharing those kinds of details even with loved ones to be energy-draining. So for him, sharing that information would be extroversion. For me, best friends or strangers on the street, they're just words. Intimacy to me is sharing emotion, which I do with only a select few. It's like the difference between reading some kind of report and then reading a poem: the report is just information, which I'd share with pretty much anyone who expresses an interest; the poem is emotion that's separate from the information. It's connecting. I talk with a lot of people, I connect with only a very few.

[renaeden]

I know two extroverted autistic people in rl, but I would bet that when they are at home, they recharge and become a bit introverted. They make the effort (maybe it it isn't even a lot of effort) when out and about and they are fine about doing that.

I didn't know your JNSQ was diagnosed. I can't help but think it was a bit rotten of him to question your dx. It never feels the same once that has been done.

[Sophist]

I know two extroverted autistic people in rl, but I would bet that when they are at home, they recharge and become a bit introverted. They make the effort (maybe it it isn't even a lot of effort) when out and about and they are fine about doing that.

I didn't know your JNSQ was diagnosed. I can't help but think it was a bit rotten of him to question your dx. It never feels the same once that has been done.

He'd never seek an official dx. I mean, who would diagnose him? He's one of the world's leading autism experts. It's kind of like "Who polices the police?" But it doesn't take long to realize-- for anybody familiar with AS-- that he's very Asperger's. Even Temple Grandin told him she thought he was AS.

It was a bit rotten of him to question it. I know he'd been keeping the thought to himself for awhile by the way he'd said it. We were having a heart-to-heart and apparently he thought it was relevant to tell me his opinion. I didn't think much about it at that point because I was focused on the larger topic of our conversation. But a week or so later, it just starting bugging me that he'd said it.

I don't often mention my AS dx anymore. But now, with him, I'd certainly do it even less simply because I know he thinks it's inaccurate.

[adhocisadirtyword]

Have you considered bringing up how much this bothered you to him? Maybe giving him a few responses to read on here?

Maybe it will be helpful for him to truly see how much of a spectrum it is anyway. And how many of us experience changes over time.

[Sophist]

I think at least at the moment, it would only be making him aware that it bugs me. Not that it would change his opinion in any way. And getting him to read things nowadays gets more and more like pulling teeth. His attention span is so short these days, he's so overworked, overstressed, that putting more things on his plate is tantamount to overloading the system.

There's plenty of other larger issues that need talking about when we do take the time and he has the energy to talk. I'm choosing my battles and this one can afford to stay on the back burner for a time.

[adhocisadirtyword]

Fair enough.

[Sophist]

Kevin, what would your family say if they read your last post? I mean, using a letter like this as a way to tell them about your dx. You did an eloquent job of saying that you want them to know, you want them to support you with this newfound knowledge, but you don't want them to treat you as a lesser person, as "disabled" because of it. You need their support and help but you're also an intelligent and proud man and don't want to be looked down upon.

If you can't say it in person, why would a letter like this not suffice?

[goddessoflubbock]

I agree with Sophist, you should give your family a chance. It is at times like these you need a support system, which a family can provide.

I remember when you were going through your troubles at work, although honestly I'd just lost my own job and was working out how I'd get insulin AND pay the mortgage so some of the details escaped me.

I had noticed you never spoke of your mother, but wasn't sure if you were estranged or what the situation was. While you can't live life on coulda' shoulda, woulda's, I surely wonder if your life wouldn't have turned out hugely different if she were still there for you.

I agree with you that it is hard when you have a good intellect, and you can see how people change their perception of you, even tho your IQ remains unchanged!

You are a very strong person - you've already been through so much, alone! Let your family in....

As for Christmas - bah, humbug!! LOL While I love to decorate and of course have to get gifts for the kids, I'd prefer to remain homebound from 11/1 - 1/1! For the past 5 years I have done the bulk of my Christmas shopping online. No crowds, no viruses, a Pepsi One at my side

[Benji]

Kevin, a lot of what you wrote sounded like stuff that I myself might write! Although not as eloquently. So I have no answers (not that you were expecting any).

Yet, it strikes me that you are a fairly strong character - perhaps 'proud' is the word? And so the fact you think that you either have to completely hide your 'disability' or completely 'give in' seems strange. Surely you can trust yourself to know where the limits are. If anything, you sound like you'd still be more likely to err on the side of overdoing it, even if you were to ask people for allowances/concessions?

If what you're doing now isn't working, it's worth at least trying something else, anyway. Even if you find yourself using it as an excuse, if you're happier then perhaps it won't be the worst thing in the world... And if you call yourself out on it you can readdress the matter then.

[Aspen]

I had noticed you never spoke of your mother, but wasn't sure if you were estranged or what the situation was. While you can't live life on coulda' shoulda, woulda's, I surely wonder if your life wouldn't have turned out hugely different if she were still there for you.

It was not Charlie's mom's choice to be away from him and his sister; she died of a heart attack when he was ten.

But I think you are right that his life would have been different if she could have stayed longer because he could talk about personal stuff with her much more easily than with his dad. This kind of stuff is hard for his dad to handle, I think.

[goddessoflubbock]

I didn't mean to imply she left intentionally. My own husband's mother died in a car accident when he was 12, and while it caused him to be more mature and responsible, I'm sure having a mother to advocate for him longer would have had a big impact on his life.

That said, I certainly think Charlie has managed exceedingly well.

[Charlie]

Thanks for all the nudges/pokes and support. One of the "problems" is that I don't know if I would get any support from the family. What I mean is that we have never spoken about ourselves in a family discussion type thing, so it is not really a supportive environment - more like each to themselves. That is not to say we don't like and want to avoid each other as that is not true, just that it has always been an emotion/personal life free zone.

To be honest I would feel far more comfortable telling my sister than my dad (and no doubt she would mention it to him sometime). I almost have done before, but pulled out due to feeling afraid. My big issue is that I hate to feel like I am being judged (as this leads to criticism or rejection).

As for my mum, I was far more attached to her than my dad or sister, which is common enough, especially as she was the one I would spend most of the time with and her death hit me hard. It just about destroyed me. What I didn't really realise until recently is that I didn't really mourn her I mourned myself and all the changes that were suddenly impacted on me. I grew up rapidly and was given responsibilities which most ten year-olds would never dream of. I would walk the best part of 2 miles home from school alone every day, and would be alone in the house for a few hours nearly every day - occasionally my sister would be there first, but normally she would be with a friend on the days she finished school earlier than me. I guess that this is the real origins of my independence - it was ingrained in me from 10, and also as a family we never ever discussed my mum. For many years the only time it came up is in the day or two before her funeral and my dad unexpectedly asked whilst we were driving along (I still remember the exact location - outside my old school in London) if we wanted to see her before the funeral. At least I chose the answer it seemed that he wanted me to say - no. He probably thought that it would be a bit much for me whereas I just thought that there was no point in it as there was nothing to gain. It was not as though I could talk to her and the thought of seeing her again lifeless was not appealing.