Have any of you given clear instructions about your AS/ASD?

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Bloodheart
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22 Jun 2011, 11:34 pm

I get frustrated with problems AS causes in communicating and problems NT's have in understanding how best to communicate with me.

When my brain has decided that it's not gonna play ball I'd love to be able to say 'if you want communication of any worth, then try emailing me, I can communicate better that way' - I'd love more if people would stand back and think for a moment that maybe they'd have better luck trying to come at me in a different way than face-to-face. When I'm close to a meltdown I'd like to be able to hold up a red card so people know to back the hell off, or when I'm in shut-down I'd love to be able to say 'I'm upset, I can't talk now, leave me be a little while please', but of course I can't say a thing so I can't let people know.

If you have an AS/ASD kid I'd imagine you can let teachers or other parents know these things, and give your child cards to show clearly what mood they're in to others - as an adult these things are more difficult, carrying cards with you doesn't exactly make you look normal, and asking people to make reasonable adjustments makes you seem 'special' or awkward.

You can clearly state 'I have AS/ASD' but if they're NT chances are they just won't understand fully what this means, certainly they'll not understand enough to spot less obvious traits or to know things such as that if you're not responding to questions you may need a different way to communicate. It would be great to tell people what behaviour to watch out for and how to interact with you, an extemporaneous lecture for staff at your place of work/school/college on how to work alongside a person with AS/ASD, but I think communicating such needs may feel uncomfortable or humiliating, although I'm not certain I understand why.

With this in mind I wonder what, if anything, any of you have done to give clear instructions about your AS/ASD?
Are you able to explain your AS/ASD upfront, be it in a letter/email, face-to-face or with some sort of tool(s)?

(FYI : we're assuming we're in a place where we can openly disclose our having AS/ASD)


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Verdandi
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23 Jun 2011, 1:59 am

Before I knew I was autistic or had ADHD, I had identified some of my problems with interpretation, memory, organization, prioritization, etc. I tried on a handful of occasions to get people to accommodate these: I asked people to clearly state what they wanted done and when they wanted it done. Also, to keep in mind that if I didn't do something when I said I would, it wasn't because I didn't want to, but because I forgot, and a reminder would be all that is necessary.

What I got in every case was outright hostility. I had my stepfather whine that he wasn't going to set up an appointment just to get me to do something - when, of course, expecting me to do things the way he wanted to ask me was so successful.

I know I have been told in one context (helping out with chores) that I should just "know" what people need to have done, and do it without any information or direction, but I find it nigh-impossible to function around this sort of thing without any kind of structure or routine. I also find it difficult to make decisions about things that apply to other people.

I know since my diagnosis I have actually talked to my mother about how hard it is for me to predict how people will react to things, and she still insists I should be able to do it, or when I say I can't, it must be that I'm lying or mistaken. There's been no improvement on the other elements.

Anyway, I get really frustrated with a lot of my cognitive issues. I get doubly frustrated when people treat me as if I am lazy. I get triply frustrated when they want me to do things, but while asking me to do all these things they refuse to accommodate me at all.

Okay, I am bitter about this sort of thing. A bit.