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Jul17
Same World, Different Neurologies
14 CommentsI’m about to say goodbye to my idea of volunteering at the local school for autistic youth. The reason? I’ve tried several times to articulate what I need in terms of how to structure my visits to the school, and I don’t feel like I’m being heard.
When I first wrote to the school, the person who answered the email seemed very enthusiastic about having me volunteer there. The hard part for me was the fear of getting overwhelmed by going to the school, meeting the teachers, watching the program, and then deciding how to proceed, all in one day. Thanks to the advice of my friend Sue, I decided to see whether I could break the meeting times into smaller pieces. Since my contact person had said, “We’re flexible and completely willing to meet your needs,” I felt confident about telling her exactly what I needed regarding my sensory issues. On June 24th, I wrote:
“The best way for me to proceed is to do things one at a time. So, perhaps
one day, I could come in and meet with you to talk over what your needs are
and how I can help. Then, another day, I could meet with Carol, or observe
one of your summer programs. If I try to do too much in one day, I’ll get
overloaded.In general, one-to-one conversations work best for me, especially when I’m
meeting new people in a new place. Once I get to know people, and they get
to know my strengths and challenges, I can talk in a small group. It’s
work, but I can do it.I could come in some time next week to talk with you or Carol. Would
Tuesday, June 30th work, in the late morning? Except for Friday, my
schedule is fairly open right now.”I didn’t hear anything back at all for more than two weeks. As Crystal mentioned in response to a previous post, neuro-typical people sometimes get distracted and forgetful about things, but they don’t realize that we Aspies often need an answer one way or the other so that we can get on with our lives. That’s how I was feeling. I didn’t want to write again after I’d been so clear, so my husband offered to call the school and let them know that I needed an answer. The woman he spoke with was very apologetic and said they’d be willing to have me do whatever I’d like.
So, I wrote to my contact person again about setting up a time to meet, and this was part of her response:
“I think the best thing is for you to meet with me briefly and then observe so
you can see how we’re set up, so you have a better idea of what you’d like to do to volunteer. I’m open for anything that works for you!”I know that this person is well-intentioned and very busy, but her response bore very little relation to what I had earlier said. She says she’s open to anything that works for me, but she’s not responding to what I actually said would work for me. What I needed was to sit down with her and discuss what the school’s needs are before I observed the program.
Despite my growing frustration, I decided to go on the assumption that she is too busy to meet with me separately from my tour of the school. Based on this premise, I took a different approach: I suggested that she tell me what the school’s needs are by email. Here’s what I wrote yesterday:
“Before I come in, I’m wondering whether you could send me an email with a
list of things I might be able to do as a volunteer. Having something to
think about ahead of time would give me a framework for observing your
program. When I’m walking into a new situation, I always do best with some
kind of structure.”Could I have been any clearer? Here is a portion of the response I received this morning:
“It’s hard for me to give you a lot of information since we’re really flexible on
what people want to do. You could basically do anything. I honestly think you’d do
best if you came in to visit with me…and then took a tour of the facility. That way,
you could see the students and assistant educators in action and could get a feel
for the flow of our school. “There are three problems here:
1) I don’t do well with being told that I can basically do anything I want. I need specifics, and I made that clear.
2) She told me what she thought would work best for me. I really dislike that, especially when I’d already told her what I know would work best for me.
3) She suggested that I come in, meet with her, and tour the facility on the same day. That’s precisely what I said I did not want to do.
I feel really sad. I don’t see a way to continue this conversation and get what I need. We’re obviously talking at cross-purposes. I am trying to get her to do something she doesn’t want to do, and she is trying to get me to do something I don’t want to do. I don’t see a way out of this impasse.
© 2009 by Rachel Cohen-Rottenberg
14 Responses to “Same World, Different Neurologies”
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I’m disheartened to see that people who work with autistics on a regular basis don’t understand this fundamental need for clarity and precision. To me, that speaks to the NT theory of mind: everyone thinks like I do. An unspoken and unconscious assumption which is in bold relief in the interaction you describe. Anyone working with autistics should know that “you can do anything you want” and “we’re completely flexible” are anathema.
Rachel, I’m sorry you’re having this experience. Is there perhaps anyone else you could talk to at the school? I know that often, your first contact at a place doesn’t necessarily reflect the attitude and orientation of everyone….maybe this particular person is just a very flexible, unorganized type who likes to keep things open and not plan too much.
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I’m very disheartened as well, but I don’t feel comfortable going to another person at the school. It’s a very small place and just going there to meet *anyone* feels like a huge challenge. Going over or around my contact person feels impossible. I can’t even begin to understand the social/institutional politics of doing that. Unless I’m trying to return a toaster, going over people’s heads doesn’t usually end well for me.
Anyway, between the not being heard and the lack of follow-up, it’s time to turn my attention elsewhere.
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Ah, I’m so sorry to hear that. That can be frustrating indeed. !!
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sorry to hear this, but to be honest, i’m not entirely surprised by how things have progressed. these people are all well-intentioned, i’m sure, but i see in your descriptions the same things i (we) encounter every day.
i used to think people all thought the way i do, so perhaps it’s a human thing, rather than an NT thing. it’s only after repeated exposure to different ways of thinking that even open-minded people can see that things may not be what they assumed. our differences make sure we have no choice about being exposed to the way ‘everybody else’ thinks. kinda like being gay in a world full of straights, assuming everybody else is the same as them.
unfortunately, i no longer seem to have much energy or patience for this. and it seems you have reached your limit as well.
just make sure this all gets into the book. i know i’m looking forward to reading how you articulate all of this. -
also, i was just thinking: most regular people don’t always realize that aspies are being direct with them purposefully. i don’t think they realize how necessary it is for us to do things this way, and what we require in response (even, bafflingly, when we TELL them what we require).
i have found that when i have to say ‘no, i need to come in for a meeting only. your suggestion will not work for me’, most NT’s react as though i’m upset or angry. i think this is because most people will only ‘resort’ to honesty and directness when they’ve reached their limit of patience, or getting upset or angry. it took YEARS for me to figure out why people were assuming upset on my part, in fact, insisting on it, even after i told them i was not. it gets very confusing. -
Ben, you’re right, the naive assumption that other people think and feel the same way you do is fundamentally human, and I think it takes a lot of experience in the world (and a personality that embraces diversity and tolerance) to realize it isn’t true. A lot of people, NT or autistic, tend to continue to operate from the naive assumption. I was just skewering the “Theory of Mind” idea that autistics are the only people who do this. (I don’t know what the Sally-Anne test measures, but it isn’t whether you can understand that other people don’t have the same internal processes you do.)
Rachel – I hadn’t even thought about how approaching someone else at the school would look to your original contact. Doh. Of course that would generate some bad blood, or at least irritation. Sigh. I’m so sorry this isn’t working out…it sounded so exciting.
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Ya have to feel for the kids there. If the staff can’t clearly work with articulated needs from an adult, how are they gonna help kids that have trouble expressing needs.
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Saja – re: the skewering. i see that now, and how appropriate
, and how correct to point out that the personality goes some way to determining what we see and what we do with it. i don’t see aspies as all wonderfully accepting super-people. i’m annoyed by 90% of most of the public i meet, can’t see why aspies would be any different. i mean, it’s not as if we’re all the same, right? I still rant at least once a week about how ridiculous the TOM is. do NT’s REALLY read each others’ minds????
obviously, they do not. they just make a guess, like i do. they might be better at it sometimes, or faster, maybe. they certainly get it wrong at least as many times as they get it right. can a statistician tell us how meaningful that is?
i think what is happening with most NT’s is an agreed-upon social conduct contract, unspoken, that smoothes things out. complete honesty and bluntess is a PR and diplomacy nightmare, which may have been where this social/neurological trait springs from.and Lizzie, i was thinking the same thing. does anybody on here know if most of the energy in institutions like this is devoted to helping aspie kids pass? if it works, and these kids have an easier life as a result, who am i to say they shouldn’t get the help, like a learning disability?
i suppose we’ll see in the newest generation of HFA kids when they grow up. i certainly would have benefited from help and understanding when i was young, not sure how i feel about being helped to be like everyone else, though. i’ve heard some of the same discussions among deaf friends regarding cochlear implants, tho i know it’s not the same thing. -
Hi Rachel,
Wow, I’ve struggled through similar processes most of my life without having support, validity and guidance. What can be comforting (our sharp awareness) can be our greatest source of frustration too, so I find myself withdrawing from the world more and more when actually I want to find a way to integrate without getting over stimulated to death.
Vincent
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Ben, you make an excellent point when you say, “I have found that when i have to say ‘no, i need to come in for a meeting only. your suggestion will not work for me’, most NT’s react as though i’m upset or angry. i think this is because most people will only ‘resort’ to honesty and directness when they’ve reached their limit of patience, or getting upset or angry.”
I’m realizing that I can sound tedious or patronizing by trying to spell things out simply and clearly when, ironically, the only reason I’m doing it is to avoid miscommunication! Sometimes, I try to couch my words in deferential phrases like, “If it’s not too much trouble…” or “If you have the time…” so that the other person understands that I’m being friendly, but it doesn’t always work.
In this case, I figured that because I was writing to someone who works with autistic people, being direct and clear would be the most effective approach, but I was wrong.
At times like this, I crave solitude.
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DonkeyBuster July 19th, 2009 at 10:22 am
Ah, bummer about the school. =0( I applaud your valiant effort, however.
Don’cha just love when you’re trying to be simple, straightforward, and open, and others misinterpret (?) that, so something counterintuitive, and then accuse you of all sorts of subversive hidden motives?
The things I’ve been accused of…
and I am left looking at them totally baffled and thinking… Why would anyone go through those kinds of mental contortions? It’s like going to LA from Albuquerque to get to El Paso… Oh wait, Amtrak does that… must be an NT organization. LOLRachel, you don’t crave solitude so much as a little sane company.
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DB, why do you think I started this blog?
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Nathanael July 28th, 2009 at 10:09 pm
Seriously, I’d probably email the woman at the school this entire blog entry (though not with comments), and say something at the top like “Look, I was hoping to help out kids with autism, but it sounds like you may not be able to deal with high-functioning adults with autism. Could you please reread what I said — I have attached my blog entry about this below — and see if anything which will work for me, which I have specificallly described, will also work for you. I am not kidding.”
And if she thinks you’re angry, well, dammit, she deserves a little bit of a wakeup call. Either you’ll get an apology, you can write it off as a hopeless place to try.
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Taylor Selseth October 27th, 2009 at 12:25 am
Sadly this seems very typical of many NTs that work with autistics, they often really are clueless or ignorant, going off of training instead of trying to really understand us.
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