Aspergers/ASD support thread

blue_monkey_2

Snaggles wrote: »

Lol, that is SUCH a good point! :T

I am now chuckling at the numerous occasions I have had to hide my laughter behind books, handbags, shopping baskets etc, because Ryan has said something very true but rather offensive like 'That lady has a big bottom, hasn't she?' :rotfl:

:rotfl: :rotfl:
On Xmas eve my auntie came round to drop off the presents and she has big teeth, well you can imagine Ryan....... 'You've got nice teeth'. Everything else (including my auntie) was trying hard not to laugh, I was mortified and didn't know where to look but I guess I have got more to come.

Welcome to the board myusernamestaken. Just in time for a Happy New Year

MyUserNamesTaken

blue_monkey wrote: »

:rotfl: :rotfl:
On Xmas eve my auntie came round to drop off the presents and she has big teeth, well you can imagine Ryan....... 'You've got nice teeth'. Everything else (including my auntie) was trying hard not to laugh, I was mortified and didn't know where to look but I guess I have got more to come.

Welcome to the board myusernamestaken. Just in time for a Happy New Year

Thanks for the welcome, BM, but I'm not new to the board.


HAPPY NEW YEAR!

PasturesNew

MyUserNamesTaken wrote: »

..
. With the right support and help (NAS, local support groups, etc), you can get through it.

I'm the treasurer for my local NAS branch...we have two Aspies on the committee, both of which are also parents of children with Asperger's.

Someone earlier asked about the Help! programme - I can thoroughly recommend it. If you can get on it, do so...they offer loads of advice and help, as well as allowing you to meet other parents in your local area who are in the same boat as you. It makes things a whole lot easier when you see just how common ASDs are (1 in every 100 people has an ASD.)

http://www.think-differently.org.uk/

Never heard of most of this. Not part of any groups, no support, no contact with anybody.

I think a lot of support is aimed at parents/kids. Not solo adults.
I'll look into all those things.

One of the difficulties I have though is following through, so while I will be interested and look it up... at the point where I have to go/do/meet somebody, I stop. I probably stop because my life experiences have proven to me that whatever I want/ask for/enquire about in the normal world is misunderstood and I come away disappointed. But I guess this is different as they will know I am having trouble communicating what I want to know.

PasturesNew

MyUserNamesTaken wrote: »

As an Aspie, I couldn't give a toss what people call it. I'm an Aspie...some people even consider "Aspie" offensive. Anyone else see the irony in discussing what's offensive and what's not in relation to Autism?

(I'm an Aspie - I'm allowed to say that. )

Actually, it could be argued that changing the labels could be seen as offensive to those on the AS, as change is something we all have a problem with. We like things to stay the same. We also like things to be straightforward and simple. Changing the labels applied to us leads to confusion and anxiety. I'd say it's politically incorrect to change labels without taking into consideration the needs of the very people you're trying hard not to offend.


The worst one I've heard is "diff-ability"...oh, that one made me groan out loud.

If you really want non-PC.... I call it, with my friends, "my mongism"
There! bite me

:P

MyUserNamesTaken

PasturesNew wrote: »

Never heard of most of this. Not part of any groups, no support, no contact with anybody.

I think a lot of support is aimed at parents/kids. Not solo adults.
I'll look into all those things.

One of the difficulties I have though is following through, so while I will be interested and look it up... at the point where I have to go/do/meet somebody, I stop. I probably stop because my life experiences have proven to me that whatever I want/ask for/enquire about in the normal world is misunderstood and I come away disappointed. But I guess this is different as they will know I am having trouble communicating what I want to know.

Contact the NAS...there's a lot of stuff going on out there for Aspies and the like. The NAS is there for anyone "affected by" Autism, be they autists themselves, or parents/family of people with ASDs. If you don't like phoning, you have the option to email.

http://www.think-differently.org.uk/Links%20and%20contacts.aspx


Above is a link with various groups you can contact. Chances are you'll find there are groups in your local area for people with ASDs, including your local branch of the NAS. Yep, these groups will be different, as they are fully aware of the communication and social issues involved. They won't push you to do anything you don't want to do, and will allow you to be yourself without having to worry about conforming to social norms (within reason, obviously ).

Remember: 1% of the population has an ASD..that's 600,000 Autists in this country alone...1 in 100.

Incidentally, I quite like this comment from Bev on the Think Differently website:

I am an Autistic adult, not a person with autism or even a person "living with" or "affected by" autism. Please don't assume that you know what challenges I do or do not face, unless you have met me and discussed this with me. I don't believe in functioning labels; they don't begin to capture the truth about the differences and similarities across the spectrum. Autism is not tragic or devastating. Societal attitudes are tragic. Prejudice is devastating.

PasturesNew

Just looked. Nothing much on the site.
I don't like to contact places... I am surprised their website puts that barrier in place. Don't they know "just ask" is an instruction that can't be followed!

duchy

Really interesting discussion......and I'm NOT changing my sig. The point about change been disturbing to people on the spectrum is a very good one.
I'd really like to find a teenage/young adults support group locally for my son but so far no luck. Suppose I could start one though. Hmmm food for though (but if anyone knows of one in Medway please let me know)

MyUserNamesTaken

PasturesNew wrote: »

Just looked. Nothing much on the site.
I don't like to contact places... I am surprised their website puts that barrier in place. Don't they know "just ask" is an instruction that can't be followed!

You made it to here...next step email them. You just have to take these things one step at a time. I know what you are getting at about barriers, etc, but there are many Aspies and High Functioning Autists out there who have managed to get involved with support groups and the such like. Some do so off their own backs, others have the help of family or social/link workers to get them involved. Have a read through the "Insight" section...there are quite a few Autistic adults posting on there. Another thing you can do is join up to ASD forums like http://www.wrongplanet.net/ . Whatever you do, avoid http://www.aspergia.com/lead.htm (they think we Aspies are the next step in human evolution... :eek:). There are plenty of other forums out there specifically for Aspies and Autists. Have a search around. You'll be surprised by what you find.

Below we have two good UK-based forums for parents/families and those with ASDs:

http://www.asd-forum.org.uk/forum/

http://www.asdfriendly.org/

Here's an american one:

http://www.autistic-spectrum-disorder.com/

PasturesNew

MyUserNamesTaken wrote: »

Whatever you do, avoid http://www.aspergia.com/lead.htm (they think we Aspies are the next step in human evolution... :eek:).

As if ... we're aliens. Living among them... waiting

MyUserNamesTaken

duchy wrote: »

Really interesting discussion......and I'm NOT changing my sig. The point about change been disturbing to people on the spectrum is a very good one.
I'd really like to find a teenage/young adults support group locally for my son but so far no luck. Suppose I could start one though. Hmmm food for though (but if anyone knows of one in Medway please let me know)

Duchy, contact the NAS to see if they know of anything going on in your area. If there isn't, ask them what help they are willing to give you to set one up.

EDIT: Quick google and I've found you one:

Medway Autistic Society

A group for people suffering for Autism, Asperger's syndrome and other Autism related conditions Autism/AS in their family to raise awareness and ask questions about it. You can't join if you live outside of the Medway area (sorry).

http://groups.myspace.com/index.cfm?fuseaction=groups.groupProfile&groupID=101307104&MyToken=9fbfd425-377f-4cfb-8b4d-eb5a3589715f

FAMILY FUND:

Incidentally, something I've not seen mentioned on here...anyone with a child who has a severe disability (ASD and ADHD count) and is on income support or has earnings below £23k per annum can apply to the Family Fund once a year for a grant to put towards things like holidays, days out, washing machine, laptops, new beds or redecorate a bedroom, etc. This year, they paid for a new washing machine for me. My son gets through so many clothes in a day....it piles up. Last year, they paid for my garden to be made more child friendly and days out.


Eligibility:

The Family Fund is open to families with children and young people aged 15 and under who have a severe disability

• The family must be resident in the UK
• Families whose income is entirely from benefits are eligible for consideration
• The Fund can consider applications from families whose gross earned income is less than £23,000 (£25,000 for families in Wales) excluding overtime and bonuses
• Where savings are less than £18,000

These criteria are set out and regularly reviewed by the Board of Trustees. The grants awarded must relate to the disabled child's needs. The Fund works with an annual fixed budget so all grant awards are discretionary and subject to funds being available. Please note that the Fund cannot help where there is a responsibility on a statutory agency to help with the requested item.

http://www.familyfundtrust.org.uk/