The National Asperger's Society

[Guest guest]

,

are you out there? What do you think of a petition to the All party

parliamentary group saying (in better words) we are a group of people who feel

that NAS does not represent many people on the spectrum and therefore the All

Party Parliamentary Group should consult more widely. (Should we say who they

should consult with?)

Zoe

and Alison or anyone else. What do you think of this plan? SARA

-----Original

Message-----

From:

Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of Sass and Rem

Sent: 21 January 2008 15:25

To: Autism-Biomedical-Europe

Subject: RE:

Re: The National Asperger's Society

I

think we have such an amazing set of people here to be able to think about this

from so many angles. I’m sure we’re going to make something happen.

(That means I agree Steph) SARA

* Re: The National

Asperger's

> > Society

> > >

> > > Hi Sara

> > >

> > > I know this is not the first letter of this kind as a friend

of mine

> > > sent a letter with very similar complaints about Early Bird to

the

> > > NAS.

> > >

> > > Problem is this - NAS very big charity and has influence over

> > > Government policy as do TreeHouse more recently. The

Government are

> > > currently looking at provision for Autism and if you feel NAS

and

> > > TreeHouse do not represent your experience of autism one way of

> > > getting input is to your MP and copy Ministers for Health and

> > > Education - Ed Balls and Alan . If sufficient people

write it

> > > should hopefully encourage the Gov to consult more widely than

> > > currently is the case.

> > >

> > > For example the All Party PArliamentary Group on Autism is

pretty

> > > much run by the NAS, they met with Ed Balls last Wednesday,

when some

> > > very articulate visiting parents and young adults with

Aspergers

> > > expressed all the difficulties they experienced he apparently

was

> > > dismissive and basically waxed lyrical about TreeHOuse and

NAS. Thing

> > > is if they are doing the briefing he is only getting a one

sided view

> > > of the issues and in my experience only small independant local

> > > support organisations (not NAS branches) represent the more

> > > challenging cases, (not biomed hence need for TA). TreeHouse

school

> > > is only accessible to very few and the same applies to home

based ABA

> > > so I am concerned that their influence is disproportionate

given the

> > > majority of kids are in mainstream, but they do have some good

> > > campaigning stuff on website.

> > >

> > > So I am like a broken record but if we write to MPS and

ministers

> > > saying we are aware policies are being formed we want to brief

them

> > > on the difficulties faced (don't need massive amount of

detail) and

> > > how NAS doesn't represent you and should not have a monopoly on

> > > policy formulation/influence if they want to do a proper

job

wider

> > > consultation is required. It would be helpful and if you have a

> > > decent MP they just might be helpful on a personal level when

an

> > > inevitable battle for services arises at some future date.

> > >

> > > JMHO FWIW

> > >

> > >

> > >

> > >

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

> > >

> > > No virus found in this incoming message.

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> > > 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]

Mum231ASD@... wrote:

>

> In a message dated 21/01/2008 16:21:26 GMT Standard Time,

> Moroza-@... writes:

>

> , are you out there? What do you think of a petition to the

> All party parliamentary group saying (in better words) we are a

> group of people who feel that NAS does not represent many people

> on the spectrum and therefore the All Party Parliamentary Group

> should consult more widely. (Should we say who they should consult

> with?)

>

> >>>We wrote and asked the TA send represetnatives, they were going to

> write back to us in the new year, that was December 2006! As far as I

> am aware, TA are still waiting for a reply!

>

> Mandi x

>

>

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

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: 20/01/2008

14:15

>

[Guest guest]

Remind them

Sally

Mum231ASD@... wrote:

>

> In a message dated 21/01/2008 16:21:26 GMT Standard Time,

> Moroza-@... writes:

>

> , are you out there? What do you think of a petition to the

> All party parliamentary group saying (in better words) we are a

> group of people who feel that NAS does not represent many people

> on the spectrum and therefore the All Party Parliamentary Group

> should consult more widely. (Should we say who they should consult

> with?)

>

> >>>We wrote and asked the TA send represetnatives, they were going to

> write back to us in the new year, that was December 2006! As far as I

> am aware, TA are still waiting for a reply!

>

> Mandi x

>

>

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

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: 20/01/2008

14:15

>

[Guest guest]

Poor (rich) old Bill Gates, his ears must be burning, i wonder if

anyone has ever bothered asking him if he thinks he has

aspergers ;+)???

Nikki

-- In Autism-Biomedical-Europe , Eva family

wrote:

>

> The question is not whether a lot of aspies think that Bill Gates

has

> Aspergers but whether doctors think so. Rumours or even " many

aspies

> agree " is not should not be sufficient for a person representing a

> national charity to make such a claim.

> Sally

>

>

[Guest guest]

No but I'd love to ask him how much of the vaccines that he is sending to the third world is from old stock that the drug companies are hoping to get rid of but at a price.

I am looking into putting Linux on my computer so that I can finally say good-bye to Microsoft. A friend of mine who is a high techie says that viruses are unknown with Linux. I want to research further to see if this is indeed the case.

Re: The National Asperger's Society

Poor (rich) old Bill Gates, his ears must be burning, i wonder if anyone has ever bothered asking him if he thinks he has aspergers ;+)???Nikki-- In Autism-Biomedical-Europe , Eva family wrote:>> The question is not whether a lot of aspies think that Bill Gates has > Aspergers but whether doctors think so. Rumours or even "many aspies > agree" is not should not be sufficient for a person representing a > national charity to make such a claim.> Sally> >

[Guest guest]

I think personalising the attack on the NAS would be counter

productive, but I would write and remind APPG members (not

administrators) that TA asked to be represented and no reply was sent,

emphasing the size of the membership and that many members feel the

NAS does not represent their experience of Autism, particularly the

branches of scientific research they support/associate with.

Petitions have limited impact compared to personal stories, there are

so many being lodged, also everyone writing the same campaign letters

have limited impact.

MPS are far more likely to remember individual constituents hardship

stories and therefore take an interest. It is valid to point out that

the NAS does not reflect your views and you worry their influence is

disproportionate, Treehouse may or may not reflect your experiences

and that you would like the bodies working on autism policies to be

aware that a broader consultation would be more democratic.

Just to be clear the current discussions around autism are not about

biomed, they are largely the result of tireless campaigning of parents

who want better access to services and one MP taking up the issue.

The health angle is about early diagnosis and intervention (by which

they would mean OT, SLT, Physio, hopefully ABA and play based

therapy). There are existing policy documents (eg. National Framework

Strategy recommends 4.5 months timeline for diagnosis and programme

implementation, the National Plan for Autism recommends gastro

examinations, lead testing for PICA, neurological exams for regressive

autism etc) Problem is they are just documents gathering dust and the

hope is to " convince " local authorities to execute the policies.

Funding needs to be ring fenced for this and for SEN generally

(separating autism from SEN funding would be impossible) and councils

obligated to fulfill the duty legally rather than optional as it

effectively is now.

The discussions are also about statementing and need for parents to

have access to independant assessments and not be caught up in post

code lotterries for placements and the need to look more closely at

post 16 provision where there are massive gaps in education and

workplace schemes. As far as I can see the current discussions are

about bolstering up existing legislation and policies to ensure they

actually happen and of course funding.

However there is also a Early Day Motion to develop a 10 year

strategic plan into provision for autism with a task force. Biomed is

more likely to get a viewing there if anywhere - Sally's analagy with

genetics and heart attacks is the kind of arguments/principles that

need to be won with a much broader audience. My reading of the

situation is that this will have to be a grassroots up type of process

as it appears to have been in the states.

I know this is all very frustrating to hear and it is only my

interpretation of current events.

Regards

> >

> > In a message dated 21/01/2008 16:21:26 GMT Standard Time,

> > Moroza-@... writes:

> >

> > , are you out there? What do you think of a petition to the

> > All party parliamentary group saying (in better words) we are a

> > group of people who feel that NAS does not represent many people

> > on the spectrum and therefore the All Party Parliamentary Group

> > should consult more widely. (Should we say who they should consult

> > with?)

> >

> > >>>We wrote and asked the TA send represetnatives, they were going to

> > write back to us in the new year, that was December 2006! As far as I

> > am aware, TA are still waiting for a reply!

> >

> > Mandi x

> >

> >

> >

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

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date:

20/01/2008 14:15

> >

>

[Guest guest]

, how is the stuff about gastro tests related to local

authorities, lead testing etc -- surely NHS?

xx Sally

claire_downey wrote:

>

>

> I think personalising the attack on the NAS would be counter

> productive, but I would write and remind APPG members (not

> administrators) that TA asked to be represented and no reply was sent,

> emphasing the size of the membership and that many members feel the

> NAS does not represent their experience of Autism, particularly the

> branches of scientific research they support/associate with.

>

> Petitions have limited impact compared to personal stories, there are

> so many being lodged, also everyone writing the same campaign letters

> have limited impact.

>

> MPS are far more likely to remember individual constituents hardship

> stories and therefore take an interest. It is valid to point out that

> the NAS does not reflect your views and you worry their influence is

> disproportionate, Treehouse may or may not reflect your experiences

> and that you would like the bodies working on autism policies to be

> aware that a broader consultation would be more democratic.

>

> Just to be clear the current discussions around autism are not about

> biomed, they are largely the result of tireless campaigning of parents

> who want better access to services and one MP taking up the issue.

>

> The health angle is about early diagnosis and intervention (by which

> they would mean OT, SLT, Physio, hopefully ABA and play based

> therapy). There are existing policy documents (eg. National Framework

> Strategy recommends 4.5 months timeline for diagnosis and programme

> implementation, the National Plan for Autism recommends gastro

> examinations, lead testing for PICA, neurological exams for regressive

> autism etc) Problem is they are just documents gathering dust and the

> hope is to " convince " local authorities to execute the policies.

> Funding needs to be ring fenced for this and for SEN generally

> (separating autism from SEN funding would be impossible) and councils

> obligated to fulfill the duty legally rather than optional as it

> effectively is now.

>

> The discussions are also about statementing and need for parents to

> have access to independant assessments and not be caught up in post

> code lotterries for placements and the need to look more closely at

> post 16 provision where there are massive gaps in education and

> workplace schemes. As far as I can see the current discussions are

> about bolstering up existing legislation and policies to ensure they

> actually happen and of course funding.

>

> However there is also a Early Day Motion to develop a 10 year

> strategic plan into provision for autism with a task force. Biomed is

> more likely to get a viewing there if anywhere - Sally's analagy with

> genetics and heart attacks is the kind of arguments/principles that

> need to be won with a much broader audience. My reading of the

> situation is that this will have to be a grassroots up type of process

> as it appears to have been in the states.

>

> I know this is all very frustrating to hear and it is only my

> interpretation of current events.

>

> Regards

>

>

>

> > >

> > > In a message dated 21/01/2008 16:21:26 GMT Standard Time,

> > > Moroza-@... writes:

> > >

> > > , are you out there? What do you think of a petition to the

> > > All party parliamentary group saying (in better words) we are a

> > > group of people who feel that NAS does not represent many people

> > > on the spectrum and therefore the All Party Parliamentary Group

> > > should consult more widely. (Should we say who they should consult

> > > with?)

> > >

> > > >>>We wrote and asked the TA send represetnatives, they were going to

> > > write back to us in the new year, that was December 2006! As far as I

> > > am aware, TA are still waiting for a reply!

> > >

> > > Mandi x

> > >

> > >

> > >

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

> > >

> > > No virus found in this incoming message.

> > > Checked by AVG Free Edition.

> > > Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date:

> 20/01/2008 14:15

> > >

> >

>

>

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

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: 20/01/2008

14:15

>