The National Asperger's Society

January 19, 2008

Hi, I just sent this letter to NAS about the session I attended the

other day. I'll let you know how they reply.

SARA

Dear Mr Middleton,

On Thursday, January the 17th, I attended a NAS Help! session held at

the Woolwell Centre in Plymouth. The session was run by two speakers,

and a Canadian lady named Jo, whose surname I didn't

catch. Both were excellent speakers and they had very many useful and

informative things to say. However, attending the session also raised

some very serious concerns about the attitudes and aims of the National

Autistic Society towards some of the adults and children it claims to

represent.

My son has a diagnosis of Autistic Spectrum disorder and I was hoping

for support from the NAS from this session. I would like to stress that

on some generalised topics such as 'how statements work' this support

was as available to me as anyone, but when it came to discussing the

actual children on the spectrum, I'm afraid I felt that my child was

excluded from your agenda. My son is at the lower end of the spectrum.

At this session, and indeed, more generally, the NAS focuses its

attention at the other end of the spectrum. I will give you some

examples taken from the session.

In describing people on the spectrum, the following observations were

made:

" they have a tendency to invade personal space during conversation "

" they often monologue about special interests " " they have a unique sense

of humour " " they don't understand sarcasm " . My son was previously

non-verbal, having lost his language at around 17 months following

normal, slightly slow development and has since learnt to request things

verbally through his home education programme. None of the above

describe him or any other child at the lower end of the spectrum. In

fact, they describe a totally different condition.

At one point Mr. outlined reasons children might fail at school.

The reasons fell into two broad categories " sensory overload " and " not

understanding subtleties of language/ body language " . I was shocked that

there was simply no mention of developmental or language delay.

The lady speaker made several comments that absolutely horrified me. I

do understand that these comments may be helpful to people with

Asperger's Syndrome or High Functioning Autism because they would help

to raise self-esteem and self-worth. However, I would like you to read

them with a child at the lower end of the spectrum in mind:

" 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. "

" 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. "

I find the above comments offensive because autism is a very difficult

condition to live with. One of the huge challenges faced by parents like

myself is that it is a very poorly understood condition. Attitudes and

comments like those above are, in no way, helpful when describing my

son's condition. This is extremely hard to overcome when it is backed up

by the National Autistic Society. Is it possible the National Autistic

Society itself does not understand autism at the lower end of the

spectrum?

I heard the lady speaker (in whom the audience place a lot of trust)

also make two very dubious scientific statements. At one point a mother

asked her 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. She said that there are a lot of girls out there with

autism that haven't been diagnosed. I am extremely interested in

following this up. Are there any studies or is there any literature to

back this up? It is not an explanation that I have heard before. I am

also interested to know if it is the official NAS explanation.

Furthermore, if these girls do not have problems with their

communication skills, then why would they be given a diagnosis of

autism? This speaker also informed the audience that autism is a genetic

disorder and that scientists are very close to finding the gene that

causes autism. Is the NAS of the opinion that autism is entirely

genetic? Do you really believe that there is no environmental cause? Do

you also believe that everyone on the spectrum has exactly the same

condition with exactly the same cause? I am also interested in her

comment, above, on Bill Gates. Has Bill Gates been diagnosed with

autism? Please provide me with details of his diagnosis.

Children or adults at the lower end of the spectrum do not have the

voice that those with Asperger's of HFA may have. Furthermore, their

parents are often struggling to cope and do not have the time to speak

on their behalf. They are also less able to attend meetings such as this

one as it is harder to find babysitters or carers for children with such

particular needs. That the NAS chooses not to represent them I find

deplorable. I have entitled this email message 'the National Asperger's

Society' and suggest that, if you changed your name, it would help

parents like myself to find more appropriate help elsewhere.

I would like to know your opinion on what I should do now. Do you want

me to remain a member of NAS? If so, I would like to know what it is

that you are offering me and my child. If you agree that you cater

better for people at the other end of the spectrum, then I would like to

know whether you are prepared to change your name.

Thank you,

Sara Moroza-

January 19, 2008

Yes,

I totally agree I should have said that Vicky. I’m really sorry if that

offended you or anyone else but thanks for saying it’s a nice letter

anyway. Sara x

-----Original

Message-----

From:

Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of MaddiganV@...

Sent: 19 January

2008 12:29

To:

Autism-Biomedical-Europe

Cc: MaddiganV@...

Subject: Re:

The National Asperger's Society

Excellent

letter Sara, look forward to seeing the reply.

They

may also like to consider the National Neuro Diverse Society as not all people

with Aspergers agree with their happy, positive attitude to their condition and

maybe couldn't care less if Bill Gates has Aspergers anyway as it has no more

relevence to their life than if he shares the same eye colour.

My

older boy is higher functioning than his brother and he is in total misery with

his problems and really wouldn't thank me holding up long dead scientists or

possible's as proof that it's OK really, cool even!

Vicky

January 19, 2008

Very well done Sara! I admire you for even attending the meeting in

the first place, sleep deprived and all. I'm not sure I would

bother, or if I did, I'd likely end up using bad language and making

enemies all round :-) I don't see how anyone could ignore what

you've written or explain away the very damning and specific

quotations you've used. Excellent work!

Anita

>

> Hi, I just sent this letter to NAS about the session I attended the

> other day. I'll let you know how they reply.

> SARA

>

> Dear Mr Middleton,

>

> On Thursday, January the 17th, I attended a NAS Help! session held

at

> the Woolwell Centre in Plymouth. The session was run by two

speakers,

> and a Canadian lady named Jo, whose surname I didn't

> catch. Both were excellent speakers and they had very many useful

and

> informative things to say. However, attending the session also

raised

> some very serious concerns about the attitudes and aims of the

National

> Autistic Society towards some of the adults and children it claims

to

> represent.

>

> My son has a diagnosis of Autistic Spectrum disorder and I was

hoping

> for support from the NAS from this session. I would like to stress

that

> on some generalised topics such as 'how statements work' this

support

> was as available to me as anyone, but when it came to discussing the

> actual children on the spectrum, I'm afraid I felt that my child was

> excluded from your agenda. My son is at the lower end of the

spectrum.

> At this session, and indeed, more generally, the NAS focuses its

> attention at the other end of the spectrum. I will give you some

> examples taken from the session.

>

> In describing people on the spectrum, the following observations

were

> made:

> " they have a tendency to invade personal space during conversation "

> " they often monologue about special interests " " they have a unique

sense

> of humour " " they don't understand sarcasm " . My son was previously

> non-verbal, having lost his language at around 17 months following

> normal, slightly slow development and has since learnt to request

things

> verbally through his home education programme. None of the above

> describe him or any other child at the lower end of the spectrum. In

> fact, they describe a totally different condition.

>

> At one point Mr. outlined reasons children might fail at

school.

> The reasons fell into two broad categories " sensory overload "

and " not

> understanding subtleties of language/ body language " . I was shocked

that

> there was simply no mention of developmental or language delay.

>

> The lady speaker made several comments that absolutely horrified

me. I

> do understand that these comments may be helpful to people with

> Asperger's Syndrome or High Functioning Autism because they would

help

> to raise self-esteem and self-worth. However, I would like you to

read

> them with a child at the lower end of the spectrum in mind:

> " 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. "

> " 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. "

>

> I find the above comments offensive because autism is a very

difficult

> condition to live with. One of the huge challenges faced by parents

like

> myself is that it is a very poorly understood condition. Attitudes

and

> comments like those above are, in no way, helpful when describing my

> son's condition. This is extremely hard to overcome when it is

backed up

> by the National Autistic Society. Is it possible the National

Autistic

> Society itself does not understand autism at the lower end of the

> spectrum?

>

> I heard the lady speaker (in whom the audience place a lot of trust)

> also make two very dubious scientific statements. At one point a

mother

> asked her 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. She said that there are a lot of girls out there

with

> autism that haven't been diagnosed. I am extremely interested in

> following this up. Are there any studies or is there any literature

to

> back this up? It is not an explanation that I have heard before. I

am

> also interested to know if it is the official NAS explanation.

> Furthermore, if these girls do not have problems with their

> communication skills, then why would they be given a diagnosis of

> autism? This speaker also informed the audience that autism is a

genetic

> disorder and that scientists are very close to finding the gene that

> causes autism. Is the NAS of the opinion that autism is entirely

> genetic? Do you really believe that there is no environmental

cause? Do

> you also believe that everyone on the spectrum has exactly the same

> condition with exactly the same cause? I am also interested in her

> comment, above, on Bill Gates. Has Bill Gates been diagnosed with

> autism? Please provide me with details of his diagnosis.

>

> Children or adults at the lower end of the spectrum do not have the

> voice that those with Asperger's of HFA may have. Furthermore, their

> parents are often struggling to cope and do not have the time to

speak

> on their behalf. They are also less able to attend meetings such as

this

> one as it is harder to find babysitters or carers for children with

such

> particular needs. That the NAS chooses not to represent them I find

> deplorable. I have entitled this email message 'the National

Asperger's

> Society' and suggest that, if you changed your name, it would help

> parents like myself to find more appropriate help elsewhere.

>

> I would like to know your opinion on what I should do now. Do you

want

> me to remain a member of NAS? If so, I would like to know what it is

> that you are offering me and my child. If you agree that you cater

> better for people at the other end of the spectrum, then I would

like to

> know whether you are prepared to change your name.

>

> Thank you,

>

> Sara Moroza-

>

January 19, 2008

Sara

This is a great letter, describes the NAS perfectly, there atititude

that they are so 'un touchable' no one else knows more than they do,

is disturbing and more parents could get help if they asked for help

from other organisation's about subjects such as diet & bowels, that

they ignore.

Lara

> > >

> > > Hi, I just sent this letter to NAS about the session I attended the

> > > other day. I'll let you know how they reply.

> > > SARA

> > >

> > > Dear Mr Middleton,

> > >

> > > On Thursday, January the 17th, I attended a NAS Help! session held

> > at

> > > the Woolwell Centre in Plymouth. The session was run by two

> > speakers,

> > > and a Canadian lady named Jo, whose surname I didn't

> > > catch. Both were excellent speakers and they had very many useful

> > and

> > > informative things to say. However, attending the session also

> > raised

> > > some very serious concerns about the attitudes and aims of the

> > National

> > > Autistic Society towards some of the adults and children it claims

> > to

> > > represent.

> > >

> > > My son has a diagnosis of Autistic Spectrum disorder and I was

> > hoping

> > > for support from the NAS from this session. I would like to stress

> > that

> > > on some generalised topics such as 'how statements work' this

> > support

> > > was as available to me as anyone, but when it came to discussing the

> > > actual children on the spectrum, I'm afraid I felt that my child was

> > > excluded from your agenda. My son is at the lower end of the

> > spectrum.

> > > At this session, and indeed, more generally, the NAS focuses its

> > > attention at the other end of the spectrum. I will give you some

> > > examples taken from the session.

> > >

> > > In describing people on the spectrum, the following observations

> > were

> > > made:

> > > " they have a tendency to invade personal space during conversation "

> > > " they often monologue about special interests " " they have a unique

> > sense

> > > of humour " " they don't understand sarcasm " . My son was previously

> > > non-verbal, having lost his language at around 17 months following

> > > normal, slightly slow development and has since learnt to request

> > things

> > > verbally through his home education programme. None of the above

> > > describe him or any other child at the lower end of the spectrum. In

> > > fact, they describe a totally different condition.

> > >

> > > At one point Mr. outlined reasons children might fail at

> > school.

> > > The reasons fell into two broad categories " sensory overload "

> > and " not

> > > understanding subtleties of language/ body language " . I was shocked

> > that

> > > there was simply no mention of developmental or language delay.

> > >

> > > The lady speaker made several comments that absolutely horrified

> > me. I

> > > do understand that these comments may be helpful to people with

> > > Asperger's Syndrome or High Functioning Autism because they would

> > help

> > > to raise self-esteem and self-worth. However, I would like you to

> > read

> > > them with a child at the lower end of the spectrum in mind:

> > > " 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. "

> > > " 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. "

> > >

> > > I find the above comments offensive because autism is a very

> > difficult

> > > condition to live with. One of the huge challenges faced by parents

> > like

> > > myself is that it is a very poorly understood condition. Attitudes

> > and

> > > comments like those above are, in no way, helpful when describing my

> > > son's condition. This is extremely hard to overcome when it is

> > backed up

> > > by the National Autistic Society. Is it possible the National

> > Autistic

> > > Society itself does not understand autism at the lower end of the

> > > spectrum?

> > >

> > > I heard the lady speaker (in whom the audience place a lot of trust)

> > > also make two very dubious scientific statements. At one point a

> > mother

> > > asked her 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. She said that there are a lot of girls out there

> > with

> > > autism that haven't been diagnosed. I am extremely interested in

> > > following this up. Are there any studies or is there any literature

> > to

> > > back this up? It is not an explanation that I have heard before. I

> > am

> > > also interested to know if it is the official NAS explanation.

> > > Furthermore, if these girls do not have problems with their

> > > communication skills, then why would they be given a diagnosis of

> > > autism? This speaker also informed the audience that autism is a

> > genetic

> > > disorder and that scientists are very close to finding the gene that

> > > causes autism. Is the NAS of the opinion that autism is entirely

> > > genetic? Do you really believe that there is no environmental

> > cause? Do

> > > you also believe that everyone on the spectrum has exactly the same

> > > condition with exactly the same cause? I am also interested in her

> > > comment, above, on Bill Gates. Has Bill Gates been diagnosed with

> > > autism? Please provide me with details of his diagnosis.

> > >

> > > Children or adults at the lower end of the spectrum do not have the

> > > voice that those with Asperger's of HFA may have. Furthermore, their

> > > parents are often struggling to cope and do not have the time to

> > speak

> > > on their behalf. They are also less able to attend meetings such as

> > this

> > > one as it is harder to find babysitters or carers for children with

> > such

> > > particular needs. That the NAS chooses not to represent them I find

> > > deplorable. I have entitled this email message 'the National

> > Asperger's

> > > Society' and suggest that, if you changed your name, it would help

> > > parents like myself to find more appropriate help elsewhere.

> > >

> > > I would like to know your opinion on what I should do now. Do you

> > want

> > > me to remain a member of NAS? If so, I would like to know what it is

> > > that you are offering me and my child. If you agree that you cater

> > > better for people at the other end of the spectrum, then I would

> > like to

> > > know whether you are prepared to change your name.

> > >

> > > Thank you,

> > >

> > > Sara Moroza-

> > >

> >

>

January 19, 2008

>

> Hi is,

>

> This speaker also informed the audience that autism is a genetic

> > disorder and that scientists are very close to finding the gene that

> > causes autism. Is the NAS of the opinion that autism is entirely

> > genetic?

>

> * This NAS is of the opinion that genetics cannot be discounted but

> still doesnt know what causes autism.

>

> I thought it was universally accepted that autism was

caused by a combination of genetic and environmental factors.

* i think the jury is out. There is evidence according to lorna wing

that its a possibility. i think the autumn issue of communication said

something about the NAS not taking sides to whether it was genetic or not.

> Has Bill Gates been diagnosed with

> > autism? Please provide me with details of his diagnosis.

>

> * Hes rumoured to be an aspie and many aspies agree with me.

> >

> Yeah but this comment isn't helpful to my little boy although it

might be to people at the other end of the spectrum. if my son goes to

school and the teacher/ LEA thinks Bill Gates is arriving, he is

unlikely to get the enormous level of support and input that he needs.

i can understand that. Hopefully once the term spectrum is described

to the LEA then he/she can be aware of the levels of need and support

needed for your son.

> * That the NAS chooses not to represent them I find

> deplorable.

>

> * They have taken that into consideration in the current issue of

> communication and will represent more LFA people in future issues.

> * Really? that's interesting, is. Where did you hear

> that?

* From the horses mouth. Quote from autumn issue " ...we've clearly not

been doing enough in the magazine for people with severe autism and

their carers. We will be rectifying that, starting in this issue.. " p5

winter 07 communication magazine.

>

> > I have entitled this email message 'the National Asperger's

> > Society' and suggest that, if you changed your name, it would help

> > parents like myself to find more appropriate help elsewhere.

>

> * i can see your point

> that's really nice to know! Thanks for your comments, is.

> * SARA

>

is

January 20, 2008

I note the time of this mail Steph, 2am.

Sally

alasdairsmum wrote:

>

> Hi is,

>

> Sorry to " interrupt " but this statement intrigued me:

>

> * We learn from delayed inotation so will still be autistic but less

> subtly than boys. Often girls are worse affected than boys but this

> doesnt apply to me.

>

> Can you tell me what delayed inotation means, and how this has applied

> to you? I have a little girl who is very mildly on the spectrum, and a

> little boy who is more obviously so. My son has some signs of CAPD as

> well. Thanks for all the info.

>

> SM

>

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

>

> 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

>

January 20, 2008

Identical twins are not always both autistic or not autistic to the same

degree. This means it cannot be wholly genetic. It is probably like the

ID twins one of whom got leukaemia and one who didn't (see BBC news,

health pages, Jan 18/19/20th). The scientists discovered the gene which

made them BOTH vulnerable. They concluded that the leukaemia was

triggered by a virus that only one caught -- but the other was still

vulnerable and might " catch " leukaemia later in life, although the

vulnerability probably wears off because this form of leuk becomes rarer

with age. This forms a good model for thinking about autism. No " gene "

for autism has yet been discovered. All announcements so far have been

of genes that are either too common (making half the population

autistic) or too rare (hardly anyone). Another model would be BSE (mad

cow disease) to which people with a particular genetic make up are more

vulnerable and catch it quickly. Others without this make up may have a

longer incubation period or not catch it at all. That is still not known

It's good news about Communication. I like the word " clearly " -- very

ungrudging

xx Sally

atrekkie22 wrote:

>

> >

> > Hi is,

> >

> > This speaker also informed the audience that autism is a genetic

> > > disorder and that scientists are very close to finding the gene that

> > > causes autism. Is the NAS of the opinion that autism is entirely

> > > genetic?

> >

> > * This NAS is of the opinion that genetics cannot be discounted but

> > still doesnt know what causes autism.

> >

> > I thought it was universally accepted that autism was

> caused by a combination of genetic and environmental factors.

>

> * i think the jury is out. There is evidence according to lorna wing

> that its a possibility. i think the autumn issue of communication said

> something about the NAS not taking sides to whether it was genetic or not.

>

> > Has Bill Gates been diagnosed with

> > > autism? Please provide me with details of his diagnosis.

> >

> > * Hes rumoured to be an aspie and many aspies agree with me.

> > >

> > Yeah but this comment isn't helpful to my little boy although it

> might be to people at the other end of the spectrum. if my son goes to

> school and the teacher/ LEA thinks Bill Gates is arriving, he is

> unlikely to get the enormous level of support and input that he needs.

>

> i can understand that. Hopefully once the term spectrum is described

> to the LEA then he/she can be aware of the levels of need and support

> needed for your son.

>

> > * That the NAS chooses not to represent them I find

> > deplorable.

> >

> > * They have taken that into consideration in the current issue of

> > communication and will represent more LFA people in future issues.

> > * Really? that's interesting, is. Where did you hear

> > that?

>

> * From the horses mouth. Quote from autumn issue " ...we've clearly not

> been doing enough in the magazine for people with severe autism and

> their carers. We will be rectifying that, starting in this issue.. " p5

> winter 07 communication magazine.

> >

> > > I have entitled this email message 'the National Asperger's

> > > Society' and suggest that, if you changed your name, it would help

> > > parents like myself to find more appropriate help elsewhere.

> >

> > * i can see your point

> > that's really nice to know! Thanks for your comments, is.

> > * SARA

> >

> is

>

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

>

> 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

>

January 20, 2008

I’m

keeping this in case I need it in my reply to their reply!

-----Original

Message-----

From:

Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of Eva family

Sent: 20 January 2008 08:47

To:

Autism-Biomedical-Europe

Subject: Re:

Re: The National Asperger's Society

Identical twins are not always both autistic or not

autistic to the same

degree. This means it cannot be wholly genetic. It is probably like the

ID twins one of whom got leukaemia and one who didn't (see BBC news,

health pages, Jan 18/19/20th). The scientists discovered the gene which

made them BOTH vulnerable. They concluded that the leukaemia was

triggered by a virus that only one caught -- but the other was still

vulnerable and might " catch " leukaemia later in life, although the

vulnerability probably wears off because this form of leuk becomes rarer

with age. This forms a good model for thinking about autism. No

" gene "

for autism has yet been discovered. All announcements so far have been

of genes that are either too common (making half the population

autistic) or too rare (hardly anyone). Another model would be BSE (mad

cow disease) to which people with a particular genetic make up are more

vulnerable and catch it quickly. Others without this make up may have a

longer incubation period or not catch it at all. That is still not known

It's good news about Communication. I like the word " clearly " -- very

ungrudging

xx Sally

atrekkie22 wrote:

>

> >

> > Hi is,

> >

> > This speaker also informed the audience that autism is a genetic

> > > disorder and that scientists are very close to finding the gene

that

> > > causes autism. Is the NAS of the opinion that autism is entirely

> > > genetic?

> >

> > * This NAS is of the opinion that genetics cannot be discounted but

> > still doesnt know what causes autism.

> >

> > I thought it was universally accepted that autism was

> caused by a combination of genetic and environmental factors.

>

> * i think the jury is out. There is evidence according to lorna wing

> that its a possibility. i think the autumn issue of communication said

> something about the NAS not taking sides to whether it was genetic or not.

>

> > Has Bill Gates been diagnosed with

> > > autism? Please provide me with details of his diagnosis.

> >

> > * Hes rumoured to be an aspie and many aspies agree with me.

> > >

> > Yeah but this comment isn't helpful to my little boy although it

> might be to people at the other end of the spectrum. if my son goes to

> school and the teacher/ LEA thinks Bill Gates is arriving, he is

> unlikely to get the enormous level of support and input that he needs.

>

> i can understand that. Hopefully once the term spectrum is described

> to the LEA then he/she can be aware of the levels of need and support

> needed for your son.

>

> > * That the NAS chooses not to represent them I find

> > deplorable.

> >

> > * They have taken that into consideration in the current issue of

> > communication and will represent more LFA people in future issues.

> > * Really? that's interesting, is. Where did you hear

> > that?

>

> * From the horses mouth. Quote from autumn issue " ...we've clearly

not

> been doing enough in the magazine for people with severe autism and

> their carers. We will be rectifying that, starting in this issue.. "

p5

> winter 07 communication magazine.

> >

> > > I have entitled this email message 'the National Asperger's

> > > Society' and suggest that, if you changed your name, it would

help

> > > parents like myself to find more appropriate help elsewhere.

> >

> > * i can see your point

> > that's really nice to know! Thanks for your comments, is.

> > * SARA

> >

> is

>

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

>

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> Checked by AVG Free Edition.

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

09:01

>

January 20, 2008

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

January 20, 2008

That

makes a lot of sense, . Shall we all decide on some main points? Off the

top of my head – no research into biomedical interventions, doctors don’t

treat gut problems of children with autism, difficult to get a statement,

difficult to get good educational provision, autism is

poorly understood, difficult to get respite care. Is there any point in trying

to change NAS as well? SARA

-----Original

Message-----

From:

Autism-Biomedical-Europe

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

Sent: 20 January 2008 21:46

To:

Autism-Biomedical-Europe

Subject:

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

January 20, 2008

Why don't you attach Steve's medical document? They won't read it but

you could summarise it as " a great deal of research being done in the

States and none here " . Otherwise if you say " no research into bio-med "

the NAS will say " poor deranged parent " and the MP (knowing no better

how could he/she) will accept that. The NAS might even look at it if MPs

start replying " what about this 44 page list of major research discoveries? "

Emphasise the fact that the NAS has fallen into the hands of ND people

and doesn't represent you. You don't need to be fair. You need to be

clear. Don't use jargon like ND say " people who believe autism to be

good and oppose a research into a cure as genocide " .

Better to make one new point clearly than lots which many other people

have made before.

Or ignore them

xx Sally

Sass and Rem wrote:

>

> That makes a lot of sense, . Shall we all decide on some main

> points? Off the top of my head – no research into biomedical

> interventions, doctors don’t treat gut problems of children with

> autism, difficult to get a statement, difficult to get good

> educational provision, autism is poorly understood, difficult to get

> respite care. Is there any point in trying to change NAS as well? 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.

> Checked by AVG Free Edition.

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

09:01

>

January 21, 2008

I think they were very helpful. Maybe we should say "Like heart disease, autism has been found to have a genetic pre-disposition and an environmental trigger. Like heart disease there is no reason to suppose that it will not prove amenable to treatment, prevention and cure"I think we need to accept the genetic explanation and challenge the untreatable implication

>>Hear hear or is it here here, either way, this is perfect Sally

Mandi x

January 21, 2008

Sally and and everyone,

What do you think of a petition? Something that says the key points you

mention below and a covering letter saying what says about the

NAS not representing us? Attach the doc below too and then send this to

NAS as well as individuals sending it to their MPs. I know people on the

ABA list would sign something that said NAS didn't support them.

SARA

* Re: The National Asperger's

Society