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eristocrat
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29 Feb 2012, 11:42 pm

What would you put in a "welcome kit" for someone newly diagnosed with ASD? Books, articles, or more practical stuff? Both? What would you most want that person to know? Would you have advice or warnings about what was to come? Professional resources to recommend?

I think this thread may have appeared before... but this deserves to be asked from time to time... after all, things changed.

The Loud Hands Project is what inspires me to ask. It's one of the future projects listed on their site. Loud Hands Project



auntblabby
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01 Mar 2012, 12:20 am

somebody needs to come up with something akin to the "it gets better" stuff. :idea:



Selena
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01 Mar 2012, 12:29 am

Except does it really get better for aspies? I think most of us still get bullied as adults, whereas if you're a NT gay/lesbian/trans person, you at least have the option of moving to a queer-friendly area away from most of the homophobe bullies. Where can aspies go?

As far as the aspie coming out/welcome kit, definitely some books, although which ones depends on the aspie--age, gender, etc. Don't know if there are any books yet on being an aspie of color altho there probably should be. Maybe a list of websites like this one.



Blindspot149
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01 Mar 2012, 1:43 am

eristocrat wrote:
What would you put in a "welcome kit" for someone newly diagnosed with ASD? Books, articles, or more practical stuff? Both? What would you most want that person to know? Would you have advice or warnings about what was to come? Professional resources to recommend?

I think this thread may have appeared before... but this deserves to be asked from time to time... after all, things changed.

The Loud Hands Project is what inspires me to ask. It's one of the future projects listed on their site. Loud Hands Project


This is a good question.

I read voraciously for about a month after discover my AS - Amazon did very well out of it :-)
- A list of books by subject matter/theme would be useful
- I found the biographical books Daniel Tamet, etc, quite helpful

For those who are living less independently, it would also be helpful to have an outline relevant support support services.

It has been a wild ride for me, since my discovery, late in life, just over 2 years ago as I peel back the layers, one by one!


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auntblabby
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01 Mar 2012, 2:16 am

Selena wrote:
Except does it really get better for aspies? I think most of us still get bullied as adults, whereas if you're a NT gay/lesbian/trans person, you at least have the option of moving to a queer-friendly area away from most of the homophobe bullies. Where can aspies go? As far as the aspie coming out/welcome kit, definitely some books, although which ones depends on the aspie--age, gender, etc. Don't know if there are any books yet on being an aspie of color altho there probably should be. Maybe a list of websites like this one.

for me, from the moment i discovered what was the matter with me, things at least stopped getting worse. my dx was like a sudden appearance of handholds to grab to stop my downward spiral. since joining WP 2 years ago, things have gotten better for me, at least internally.



y-pod
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01 Mar 2012, 3:00 am

Well we've got those big red packages after diagnosis. They're all mostly information pamphlets. Like "So my kids has autism, what to do now?" Some forms on how to apply for resources. Some lists of books and web sites with more information. List of local therapists and their contact information. Some stuff about parent support groups which we never looked. :D

Unfortunately there's nothing like that for adult diagnosis. I only got a list of books and some web sites. I did find a couple useful books there. Oh and some software recommendation on learning social clues. I think it depends on how clueless the person is about autism. Some basic guide kind of books are always helpful. I bought a couple copies of Tony Atwood's book and sent them to some family. Other things that might be helpful will really depends on the person and their specific issues. You really need to know the person well to know what would be good for them. Say, seamless socks if they have issues with clothing texture.

As for me, my highest hope is for other people to accept me and leave me alone, instead of trying to fix me. I've tried pretty hard in life and have not done so bad. I'm not about to turn into a lazy blob the moment people stop nagging or inspecting me. If my parents would read even one book about Asperger's I'd be thrilled.


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Last edited by y-pod on 01 Mar 2012, 3:10 am, edited 1 time in total.

kojot
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01 Mar 2012, 3:09 am

Selena wrote:
Except does it really get better for aspies? I think most of us still get bullied as adults, whereas if you're a NT gay/lesbian/trans person, you at least have the option of moving to a queer-friendly area away from most of the homophobe bullies. Where can aspies go?
...


I think if you're learning to be better at this whole emotions business - it gets better, but if someone refuse to change it might not.



AllenVincent
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01 Mar 2012, 3:24 am

I concur with Blindspot149 some sort of directory list of relevant support services that robustly assist would be most beneficial. I.e. for myself I was assured an aspergers/deaf support worker/personal assistant within ten days before being unlawfully dismissed from Doncaster Nissan in 2010... since then it has been impossible to get help and all the major charities in England unlawfully fob my Mum and I away.



auntblabby
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01 Mar 2012, 3:30 am

kojot wrote:
I think if you're learning to be better at this whole emotions business - it gets better, but if someone refuse to change it might not.

it is not a matter of refusal but instead, one of inability to change.



kojot
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01 Mar 2012, 3:43 am

auntblabby wrote:
kojot wrote:
I think if you're learning to be better at this whole emotions business - it gets better, but if someone refuse to change it might not.

it is not a matter of refusal but instead, one of inability to change.


I refuse to believe in 'inability to change'.



OJani
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01 Mar 2012, 3:43 am

Things that can't be part of a kit. Encouraging. Empathy. For those who'd tolerate it, hugs. Some instructions, acknowledging the real impact of one's difficulties.

I believe that for those diagnosed as adults it's important to tell it's a long and shaky road ahead to really benefit from this new intelligence of theirs, but the reward well worths it.


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bnky
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01 Mar 2012, 5:49 am

Definitely needs to be age appropriate! I'm sick of being offered stuff to help me as a child or adolescent... when I'm 45!!:-@
Also, because I'm an adult with a new diagnosis, why is it assumed that I'm a NT parent to a child newly diagnosed?!?!
(Seperate annoying point: Asperger Parent support groups around here are only for parents of Aspie kids... NOT for parents who are themselves diagnosed with aspergers)



eristocrat
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02 Mar 2012, 3:01 am

I remember a while back there was an "It gets better" video done by a woman who said it *doesn't* get better, but *you* get stronger.

In the US, local ASA chapters tend to have lists of resources which are almost like advertisements for different practitioners, but no one has any personal experience with these people or can tell you if they are any good or not. It's easy to make a big list of people who claim to know their way around ASD but it goes without saying that it's pretty hard to get services.

I wonder if a sort of review site of these listings would be in order, and if people would be brave enough to contribute to it.



jamieevren1210
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02 Mar 2012, 9:07 am

One simple URL...you guessed it. WP.


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02 Mar 2012, 9:40 am

Tody Attwood has a book (or books) on AS, he is quite big in Australia for his research on ASD's. Wikipedia can be an ok read but I think the tropes.com article on Asperger's Syndrome has things written in a more "plain English" way and is a good read.



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02 Mar 2012, 11:36 am

This is as good as it gets.