Re: NAS session. SERVES ME RIGHT!

[Guest guest]

Look them up on the NAS website. One of them is Benet something or

other. If their names aren't given then ring the main switchboard and

ask. Maybe we should try the charity commissioners............... Lets

see if you get anywhere first .. they will be getting grants for their

work with people with autism. If they are mis-representing their work in

order to get money it could be fun to point that out. Lets see what they

say first

xx Sally

Sass and Rem wrote:

>

> Thanks Sally, I like it. I sent a complaint but it wasn't to anyone in

> particular. I will do as you suggest. Anyone know how to get the contact

> details of the chief exec and the chair? SARA

>

> Re: NAS session. SERVES ME RIGHT!

>

> Write to NAS head office. Describe the meeting as you have just

> described it. Say that it doesn't offer much for you and your child. Ask

>

> them what they want you to do. Do they want you to be a member? If so,

> what do they feel they are offering you? Point out that your child has a

>

> diagnosis on the spectrum and you had hoped for support from the NAS. Is

>

> it the wish of the NAS to support you or is it re-positioning itself

> towards the upper end of the spectrum? I should write to the chief exec

> and the chair.

>

> Possibly separate groups is the answer.

>

> Anyway, brave, open-minded, forgiving woman for going and admiration for

>

> not belting them one

>

> Sally

>

> Sass and Rem wrote:

> >

> > Hi,

> >

> > After our discussions and letters to papers etc. to the NAS a while

> > back I decided to join again, maybe to give them my opinion, or maybe

> > to meet people here and recruit them to TA.

> >

> > I went along yesterday to a talk on rights armed with some TA

> > leaflets. I hadn't been to any NAS talk or read any literature for a

> > long time and I was really really shocked at how much they were

> > talking about (and always were) Asperger's and not autism. They

> > mention the spectrum but then talk only about " our " children doing/

> > having the following 'invading personal space during conversation'

> > 'monologuing about special interests' 'a unique sense of humour' 'not

> > understanding sarcasm' etc. etc. At one point they wrote up the

> > reasons children might fail at school on a flip chart. They all added

> > up to two things 'sensory overload' and 'not understanding subtleties

> > of language/ body language'. There was no mention of developmental or

> > language delay.

> >

> > Anyway, it gets worse. I wrote down some of the worst comments as I

> > couldn't believe my ears... " we're all on the spectrum " " Autism is a

> > gift " " There are large groups of people around the world fed up with

> > people trying to cure them -they are proud of who they are and say

> > " Stop making me normal " " " People with autism have brought amazing

> > things into our world and it wouldn't be the same world without them "

> > " If you walk into the Chemistry or Physics Dept. of your local

> > university, I bet you'll find lots of people on the spectrum working

> > there " " Bill Gates has autism " " Do you remember all those geeky kids

> > you were at school with? They probably all had autism. "

> >

> > At one point a mother asked one of the speakers why it was that more

> > boys than girls had autism. She replied that it's because girls have

> > better communication skills and so are often overlooked. There are a

> > lot of girls out there with autism that haven't been diagnosed. "

> >

> > The other thing that struck me was that the parents present all seemed

>

> > to have higher functioning kids and it struck me that our kids have

> > even less of a voice compared to people with Asperger's than I thought

>

> > before. It is probably much harder for parents of more severely

> > affected kids to get to these meetings. All the parents yesterday had

> > kids in mainstream schools with no or little support.

> >

> > I didn't heckle them as I wanted them to give out leaflets, which they

>

> > did but also because they really weren't interested in listening to

> > the audience. Everyone was chomping at the bit to talk and they

> > weren't letting them. I also thought that their kids weren't like Tom.

> >

> > Anyway, I've just written to NAS to complain but am wondering again

> > whether it is worth battling with NAS or whether they really should

> > rename themselves the National Asperger's Society. What do you think?

> >

> > SARA

> >

> >

> >

> ----------------------------------------------------------

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date:

> 16/01/2008 09:01

> >

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

> advice. If you need medical advice, please seek it from a suitably

> qualified practitioner.

>

>

[Guest guest]

they really should rename themselves the National Asperger’s Society. What do you think?

>>Briliant idea

Mandi x

[Guest guest]

I attended the NAS EarlyBird course recently and i thought i'd share a

couple of gems from the 'team' (consisting of portage, teaching staff

and local nas)

1) 'these children have self regulating diets because they are so in

tune with their own bodies they know what nutrients they need - a bit

like pregnant women with pica..' I said rubbish, but wasn't brave

enough (at that point) to stand up and openly dispute - things got more

ridiculous....

2) they talked about the iceberg effect for behaviours, when we were

given our 'homework' to decide what possible causes could effect

behaviour - i spoke of gut pain. i was told this wan't proved! i got a

bit arsey and started quoting articles to them (I came prepared that

week) and was told it wasn't the time and the place..

3) A discussion took place about how our kids may be autistic but in

the majority of cases they are healthy so we should be grateful for

that. I got my list of evidence again and then stated my own personal

evidence - nic's results for yeast, metals, inflammation, intolerances,

then started handing out leaflets and getting my collection of biomed

books out and laying them on the coffee table at break time. They said

could i please leave it til the last day of the course when there would

be a chance to comment and to celebrate what we'd learned (!!!) the

promised session never came so i took everyone's name and 2 of the mums

are looking into biomed now. Victory!

I wrote to complain about it - haven't heard back yet, will let you

know what they say. It is pathetic! They tout the earlybird course as

an intervention on our local nas group, whilst biomed is dismissively

called 'vitamin therapy' making it sound trivial

What a crock, and to think on the day i recd nic's diagnosis, and i

said to them 'what can we do now then?' they said wait for the

earlybird.

jane

x

>

>

> In a message dated 18/01/2008 11:10:18 GMT Standard Time,

> Moroza-@... writes:

>

> they really should rename themselves the National Asperger’s

Society. What

> do you think?

>

>

> >>Briliant idea

>

> Mandi x

>

[Guest guest]

The Early Bird!!!! They make me so mad. When was diagnosed 11 years ago now, they sent me a woman who didn't speak english and didn't drive. I had to collect and drop her off, she over stayed her welcome and we gained absolutely nothing from her visit. I complained and they agreed with me that it wasn't such a good idea. I Then got endless glossy brochures about fund raising events and residential homes that they supported - that said it all.

What research/ evidence do they base the utter dribble that they are coming out with?

Re: NAS session. SERVES ME RIGHT!

I attended the NAS EarlyBird course recently and i thought i'd share a couple of gems from the 'team' (consisting of portage, teaching staff and local nas)1) 'these children have self regulating diets because they are so in tune with their own bodies they know what nutrients they need - a bit like pregnant women with pica..' I said rubbish, but wasn't brave enough (at that point) to stand up and openly dispute - things got more ridiculous....2) they talked about the iceberg effect for behaviours, when we were given our 'homework' to decide what possible causes could effect behaviour - i spoke of gut pain. i was told this wan't proved! i got a bit arsey and started quoting articles to them (I came prepared that week) and was told it wasn't the time and the place..3) A discussion took place about how our kids may be autistic but in the majority of cases they are healthy so we should be grateful for that. I got my list of evidence again and then stated my own personal evidence - nic's results for yeast, metals, inflammation, intolerances, then started handing out leaflets and getting my collection of biomed books out and laying them on the coffee table at break time. They said could i please leave it til the last day of the course when there would be a chance to comment and to celebrate what we'd learned (!!!) the promised session never came so i took everyone's name and 2 of the mums are looking into biomed now. Victory!I wrote to complain about it - haven't heard back yet, will let you know what they say. It is pathetic! They tout the earlybird course as an intervention on our local nas group, whilst biomed is dismissively called 'vitamin therapy' making it sound trivialWhat a crock, and to think on the day i recd nic's diagnosis, and i said to them 'what can we do now then?' they said wait for the earlybird.janex>> > > > they really should rename themselves the National Asperger’s Society. What > do you think?> > > >>Briliant idea> > Mandi x>

[Guest guest]

Write to NAS head office. Describe the meeting as you have just

described it. Say that it doesn't offer much for you and your child. Ask

them what they want you to do. Do they want you to be a member? If so,

what do they feel they are offering you? Point out that your child has a

diagnosis on the spectrum and you had hoped for support from the NAS. Is

it the wish of the NAS to support you or is it re-positioning itself

towards the upper end of the spectrum? I should write to the chief exec

and the chair.

Possibly separate groups is the answer.

Anyway, brave, open-minded, forgiving woman for going and admiration for

not belting them one

Sally

Sass and Rem wrote:

>

> Hi,

>

> After our discussions and letters to papers etc. to the NAS a while

> back I decided to join again, maybe to give them my opinion, or maybe

> to meet people here and recruit them to TA.

>

> I went along yesterday to a talk on rights armed with some TA

> leaflets. I hadn’t been to any NAS talk or read any literature for a

> long time and I was really really shocked at how much they were

> talking about (and always were) Asperger’s and not autism. They

> mention the spectrum but then talk only about “our” children doing/

> having the following ‘invading personal space during conversation’

> ‘monologuing about special interests’ ‘a unique sense of humour’ ‘not

> understanding sarcasm’ etc. etc. At one point they wrote up the

> reasons children might fail at school on a flip chart. They all added

> up to two things ‘sensory overload’ and ‘not understanding subtleties

> of language/ body language’. There was no mention of developmental or

> language delay.

>

> Anyway, it gets worse… I wrote down some of the worst comments as I

> couldn’t believe my ears…..”we’re all on the spectrum” “Autism is a

> gift” “There are large groups of people around the world fed up with

> people trying to cure them -they are proud of who they are and say

> “Stop making me normal”” “People with autism have brought amazing

> things into our world and it wouldn’t be the same world without them”

> “If you walk into the Chemistry or Physics Dept. of your local

> university, I bet you’ll find lots of people on the spectrum working

> there” “Bill Gates has autism” “Do you remember all those geeky kids

> you were at school with? They probably all had autism.”

>

> At one point a mother asked one of the speakers why it was that more

> boys than girls had autism. She replied that it’s because girls have

> better communication skills and so are often overlooked. There are a

> lot of girls out there with autism that haven’t been diagnosed.”

>

> The other thing that struck me was that the parents present all seemed

> to have higher functioning kids and it struck me that our kids have

> even less of a voice compared to people with Asperger’s than I thought

> before. It is probably much harder for parents of more severely

> affected kids to get to these meetings. All the parents yesterday had

> kids in mainstream schools with no or little support.

>

> I didn’t heckle them as I wanted them to give out leaflets, which they

> did but also because they really weren’t interested in listening to

> the audience. Everyone was chomping at the bit to talk and they

> weren’t letting them. I also thought that their kids weren’t like Tom.

>

> Anyway, I’ve just written to NAS to complain but am wondering again

> whether it is worth battling with NAS or whether they really should

> rename themselves the National Asperger’s Society. What do you think?

>

> SARA

>

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008

09:01

>

[Guest guest]

Thanks Sally, I like it. I sent a complaint but it wasn't to anyone in

particular. I will do as you suggest. Anyone know how to get the contact

details of the chief exec and the chair? SARA

Re: NAS session. SERVES ME RIGHT!

Write to NAS head office. Describe the meeting as you have just

described it. Say that it doesn't offer much for you and your child. Ask

them what they want you to do. Do they want you to be a member? If so,

what do they feel they are offering you? Point out that your child has a

diagnosis on the spectrum and you had hoped for support from the NAS. Is

it the wish of the NAS to support you or is it re-positioning itself

towards the upper end of the spectrum? I should write to the chief exec

and the chair.

Possibly separate groups is the answer.

Anyway, brave, open-minded, forgiving woman for going and admiration for

not belting them one

Sally

Sass and Rem wrote:

>

> Hi,

>

> After our discussions and letters to papers etc. to the NAS a while

> back I decided to join again, maybe to give them my opinion, or maybe

> to meet people here and recruit them to TA.

>

> I went along yesterday to a talk on rights armed with some TA

> leaflets. I hadn't been to any NAS talk or read any literature for a

> long time and I was really really shocked at how much they were

> talking about (and always were) Asperger's and not autism. They

> mention the spectrum but then talk only about " our " children doing/

> having the following 'invading personal space during conversation'

> 'monologuing about special interests' 'a unique sense of humour' 'not

> understanding sarcasm' etc. etc. At one point they wrote up the

> reasons children might fail at school on a flip chart. They all added

> up to two things 'sensory overload' and 'not understanding subtleties

> of language/ body language'. There was no mention of developmental or

> language delay.

>

> Anyway, it gets worse. I wrote down some of the worst comments as I

> couldn't believe my ears... " we're all on the spectrum " " Autism is a

> gift " " There are large groups of people around the world fed up with

> people trying to cure them -they are proud of who they are and say

> " Stop making me normal " " " People with autism have brought amazing

> things into our world and it wouldn't be the same world without them "

> " If you walk into the Chemistry or Physics Dept. of your local

> university, I bet you'll find lots of people on the spectrum working

> there " " Bill Gates has autism " " Do you remember all those geeky kids

> you were at school with? They probably all had autism. "

>

> At one point a mother asked one of the speakers why it was that more

> boys than girls had autism. She replied that it's because girls have

> better communication skills and so are often overlooked. There are a

> lot of girls out there with autism that haven't been diagnosed. "

>

> The other thing that struck me was that the parents present all seemed

> to have higher functioning kids and it struck me that our kids have

> even less of a voice compared to people with Asperger's than I thought

> before. It is probably much harder for parents of more severely

> affected kids to get to these meetings. All the parents yesterday had

> kids in mainstream schools with no or little support.

>

> I didn't heckle them as I wanted them to give out leaflets, which they

> did but also because they really weren't interested in listening to

> the audience. Everyone was chomping at the bit to talk and they

> weren't letting them. I also thought that their kids weren't like Tom.

>

> Anyway, I've just written to NAS to complain but am wondering again

> whether it is worth battling with NAS or whether they really should

> rename themselves the National Asperger's Society. What do you think?

>

> SARA

>

>

>

------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date:

16/01/2008 09:01

>

DISCLAIMER

No information contained in this post is to be construed as medical

advice. If you need medical advice, please seek it from a suitably

qualified practitioner.

[Guest guest]

they were so crap in my part of the world that there wasn't even one EB

available at the time I asked for it (stupidly hoping there may be some

half-useful stuff there). so glad now I didn't have to put up with that

sort of rubbish.

Natasa

> >

> >

> > In a message dated 18/01/2008 11:10:18 GMT Standard Time,

> > Moroza-@ writes:

> >

> > they really should rename themselves the National Asperger’s

> Society. What

> > do you think?

> >

> >

> > >>Briliant idea

> >

> > Mandi x

> >

>

[Guest guest]

Should ask them what double blind placebo controlled peer reviewed studies they have proving that selective eating is due to "being so in tune with your own body!"

So when they make unsupported statements it's OK!

The hypocrisy makes me want to vomit, sorry for the rant.

SM

[Guest guest]

I think you're absolutely right. This has nothing in common with my

boy at all. It's so alienating - like you're " failing " at being

properly autistic. This is a vast spectrum, the type of help needed

is simply not reflected here. Worth a try though, at least so you can

speak from a position of knowledge. Grrr.

>

> Hi,

>

> After our discussions and letters to papers etc. to the NAS a while back

> I decided to join again, maybe to give them my opinion, or maybe to meet

> people here and recruit them to TA.

>

> I went along yesterday to a talk on rights armed with some TA leaflets.

> I hadn't been to any NAS talk or read any literature for a long time and

> I was really really shocked at how much they were talking about (and

> always were) Asperger's and not autism. They mention the spectrum but

> then talk only about " our " children doing/ having the following

> 'invading personal space during conversation' 'monologuing about special

> interests' 'a unique sense of humour' 'not understanding sarcasm' etc.

> etc. At one point they wrote up the reasons children might fail at

> school on a flip chart. They all added up to two things 'sensory

> overload' and 'not understanding subtleties of language/ body language'.

> There was no mention of developmental or language delay.

>

> Anyway, it gets worse. I wrote down some of the worst comments as I

> couldn't believe my ears... " we're all on the spectrum " " Autism is a

> gift " " There are large groups of people around the world fed up with

> people trying to cure them -they are proud of who they are and say " Stop

> making me normal " " " People with autism have brought amazing things into

> our world and it wouldn't be the same world without them " " If you walk

> into the Chemistry or Physics Dept. of your local university, I bet

> you'll find lots of people on the spectrum working there " " Bill Gates

> has autism " " Do you remember all those geeky kids you were at school

> with? They probably all had autism. "

> At one point a mother asked one of the speakers why it was that more

> boys than girls had autism. She replied that it's because girls have

> better communication skills and so are often overlooked. There are a lot

> of girls out there with autism that haven't been diagnosed. "

>

> The other thing that struck me was that the parents present all seemed

> to have higher functioning kids and it struck me that our kids have even

> less of a voice compared to people with Asperger's than I thought

> before. It is probably much harder for parents of more severely affected

> kids to get to these meetings. All the parents yesterday had kids in

> mainstream schools with no or little support.

>

> I didn't heckle them as I wanted them to give out leaflets, which they

> did but also because they really weren't interested in listening to the

> audience. Everyone was chomping at the bit to talk and they weren't

> letting them. I also thought that their kids weren't like Tom.

>

> Anyway, I've just written to NAS to complain but am wondering again

> whether it is worth battling with NAS or whether they really should

> rename themselves the National Asperger's Society. What do you think?

> SARA

>

[Guest guest]

I wanted to say congratulations on the converts to biomed you made

Jane. Really stupendous stuff! I'm not quite sure what getting

arsey means, but I love that saying, and I'm pretty sure that I would

have loved to see it :-)

Anita

> >

> >

> > In a message dated 18/01/2008 11:10:18 GMT Standard Time,

> > Moroza-@ writes:

> >

> > they really should rename themselves the National Asperger’s

> Society. What

> > do you think?

> >

> >

> > >>Briliant idea

> >

> > Mandi x

> >

>

[Guest guest]

HEAR

HEAR. I don’t seem to very good at it

L.

Thanks

for your kind comments, Anita.  And I love

it when other English speakers don’t understand British words. I always forget

there are differences so it always surprises me and makes me laugh out loud,

like when my American friend held up a biscuit and said with a really puzzled voice

“Is this a biscuit? Or once when I told her my lunch was ‘scrummy’

she said ‘is that good or bad?’. Sorry very OT and arsey means, ummm, I think an  equivalent word is shirty???

Do you say that? SARA

-----Original

Message-----

From: Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of Anita

Sent: 19 January 2008 13:19

To:

Autism-Biomedical-Europe

Subject:

Re: NAS session. SERVES ME RIGHT!

I wanted to say congratulations on the converts to biomed you made

Jane. Really stupendous stuff! I'm not quite sure what getting

arsey means, but I love that saying, and I'm pretty sure that I would

have loved to see it :-)

Anita

> >

> >

> > In a message dated 18/01/2008 11:10:18 GMT Standard Time,

> > Moroza-@ writes:

> >

> > they really should rename themselves the National Asperger’s

> Society. What

> > do you think?

> >

> >

> > >>Briliant idea

> >

> > Mandi x

> >

>

[Guest guest]

LOL! I don't know what shirty means either! I'm going to assume,

from Jane's letter, that shirty and arsey, at least in this case,

mean refusing to back down to people who assume they're smarter than

you but in reality are so willfully ignorant they should hang their

hangs in utter shame. I'm guessing it also involves a lot of cold

looks, arched brows, and tut-tutting directed at Jane ;-)

And, Sara, I'm sure you do convert people. IME, it often happens

long after we've spoken to people, once they have had a bit of time

to digest and perhaps a few more encounters with this way of

thinking. If you are going to stay a part of the NAS, you will help

shape the views of many people, I'm sure. But there will always be,

in any group of people, hardcore dolts who refuse to learn anything.

Anita

>

> HEAR HEAR. I don't seem to very good at it L.

> Thanks for your kind comments, Anita. And I love it when other

English

> speakers don't understand British words. I always forget there are

> differences so it always surprises me and makes me laugh out loud,

like

> when my American friend held up a biscuit and said with a really

puzzled

> voice " Is this a biscuit? Or once when I told her my lunch

was `scrummy'

> she said `is that good or bad?'. Sorry very OT and arsey means,

ummm, I

> think an equivalent word is shirty??? Do you say that? SARA