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C2V
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08 Sep 2017, 3:29 am

So. These two things may also apply to other autistic people.

1. Phone - Like many autistics, I don't handle the phone well. I will always specify my preferred method of contact is email, and always provide my email address. I will often make a point of warning people that I will not answer my phone but I will answer my email promptly, as I check this every day. I'm up front about this.
If they choose to ignore this, then I have a failsafe - I have a voicemail on my phone, specifically telling callers to leave a detailed message, and I will return the call or otherwise contact them if they have an available email. Then at least I know who they are, what they want, and I can prepare my "script" and have any documents, cards, numbers etc that that institution may need on hand when I return their call.
After all this, I just got a nasty letter (to the wrong mailing address no less, even though I was also very clear that under no circumstances is any of my mail to be sent anywhere near the house I'm currently staying in) from a dental clinic I am on the waiting list for, telling me that they tried to contact me several times by phone, and because they could not contact me, they are threatening to take me off the waiting list unless I contact them by phone by September 18th.
It got me wondering how deaf people deal with this. They can't very well demand a deaf person phone them or they will refuse that person medical services. I am more and more nonverbal- I have a diagnosed speech disorder - and I thought to introduce this to make them respect my contact method and stop threatening me unless I communicate with them how they demand.
Has anyone had issues with this phone obsession? How did you ensure people contact you by other means, if they are this disrespectful of their patients' wishes even though I have provided alternate means of contact? It was also pertinent, I thought, that they left no message. They didn't even call, leave a message, and allow me to return that call.

2. Autonomy - Relatives just trampled all over my personal privacy and autonomy (as usual) by setting up an electronic road toll tag under their name with my legal name (which they know full well is out of bounds) attached to it, so whenever the car goes through a toll, they are notified and it goes on their account. Basically, they're tracking me. They did not ask me before doing this, and as said, I have been very clear that my legal name and status are off limits for them, and they are never to use that name or provide it to any outside agencies. They did it anyway. Again, like many autistics, I struggle with autonomy. I can only seem to keep myself afloat for a short time, because I have problems holding jobs. This means I am constantly forced back under their power, and they do things like this to me all the time, as if I am not an adult who deserves any kind of personal autonomy. They are extremely intrusive and are always spying on me, tracking me, and attempting to control my life. It's incredibly inappropriate. They justify this because they have to "cover" for me, when my jobs fall through and I end up back in their power.
I am working on a permanent solution to this through a financial aid loan, but it will take time, and in the meantime (as if they know I'm trying to escape) they are pulling this crap to tighten their grip.
Many autistic adults, it seems, get treated like they're incapable by relatives. I have pushed back against this hard in the past, and have demonstrated in numerous other ways that I am capable, but they continue to treat me as if I am incapable and intellectually disabled, and have to be minded like a baby by them. No autonomy.
How do others deal with this kind of behaviour from relatives? Especially if, like me for the moment, you don't have any other choice but to be involved with them for a while? How does one assert independent authority when you are in some ways forced to be dependent? How do others stop themselves being walked all over and their privacy violated when in a dependent position?
I'm aware this rant may be more Haven appropriate, but I would appreciate feedback and most people read here.


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Raleigh
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08 Sep 2017, 2:42 pm

Have you ever used the NRS (National Relay Service)?
You can do it on the internet now but we used to use clunky TTYs once (Telephone Typewriters).
It's not a perfect system, sometimes it drops out, but it's good in an emergency.
You type in the text and someone will speak it for you.
You can also select to have text delivered back to you or for them to speak back to you.


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Raleigh
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08 Sep 2017, 2:48 pm

^ I shouldn't really say "emergency", because it would be the last thing you'd use in an actual emergency.
I meant, if you absolutely need someone to speak for you.


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08 Sep 2017, 3:04 pm

Actually, I see there's an NRS app now. (I haven't used it for quite a while)


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09 Sep 2017, 11:59 am

Advice from deaf people also suggested a relay service. I don't know - I always feel unsure about getting into the alternative communication apps thing, or using alternative communication devices like text to speak on ipads and so on. It feels ... unnatural. Signing feels natural to me, as does doing everything through written means, and if I need to speak I vastly prefer to go in person - it's just all these people insisting on verbal communication by phone, and not accepting any other way.
For no reason, either - a few days ago I sent an enquiry about a training course I was interested in, but did not want to spend the first year as an apprentice just mopping floors, so asked if it was possible to do the first bit via correspondence so by the time I got into the job, I would have skills to do more than mop the floors.
The response I got to my email, via email?
"Please call me."
No. I won't. What is so hard about typing out an answer??? What can possibly need to be said that can't be written, but can only be spoken?
It annoys me. A lot, obviously.
I need to get much better at signing. Then it would be ridiculous for them to suggest that someone who communicates purely by sign language just start talking because they demand it. :evil:


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harry12345
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09 Sep 2017, 12:19 pm

People used to writing/typing (i.e. can touch type) don't mind sending messages that way.

p e o p l e w h o c a n n o t t o u c h t y p e s p e n d l o n g e r t y p i n g t h i n g s a n d m a k e m o r e m i s t a k e s p l u s t h e r e i s w r i t t e n e v i d e n c e of w h a t t h e y h a v e a g r e e d t o



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09 Sep 2017, 12:30 pm

I hate talking on the phone as well, but nobody ever calls me because I don't own a cell phone. I am about 1 of 5 people at my school that doesn't own one. I understand that calls can't really be avoided if you have to have a phone, but I still feel your pain! My friends are constantly pestering me to get FaceTime. I hate FaceTime (I don't really care for talking to people for hours with no break), so I always make up some stupid excuse- "Oh, I don't know how to sign in" or "I actually have to go someplace in a few minutes." Sorry this post really isn't helpful, but I just thought I would share my way of getting out of talking to people on the phone!

:D


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BirdInFlight
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09 Sep 2017, 1:41 pm

I can relate to your anger at this phone issue.

I loathe being asked for my phone number. I haven't yet mustered the courage to actually tell people I don't want to be called. I admire you for being upfront about this, and I think it's the right thing to do; I want to do this too.

But I agree with you I think a lot of people or businesses probably can't deal with the fact that someone doesn't want phone contact. And that sucks.

The only time I'm okay with phone calls is from STRICTLY a friend with whom I've established I feel comfortable. Then I'm comfortable calling or being called or talking on the phone.

But with the rest of the world I HATE, HATE, HATE it.

My preferred method of communication is e-mail too, like you.

There's a friend of mine who won't even give me his e-mail address. He keeps claiming his "internet's broken" . . . .for like the last three years. . . BULL s**t.

My phone is even incredibly expensive to use because I don't have a plan, just very costly pay-as-you-go. I keep telling him that I'd rather e-mail with him because it's "free" in a way each text or call is certainly not free for me.