Re: Was: Emma Noble; now NAS

[Guest guest]

Apologies Zoe if I offended you, wasn't my intention.

Are the tests our children have recognized in the first place? I know the whole battery of tests I had done on were rejected completely by his Gastro on the grounds they were not recognized and therefore she wouldn't even be able to read them.

I also get the impression that they are very much influenced by the ND movement and are not altogether supportive of treatments or therapies, the message seems to be awareness and acceptance.

The Emma Noble article was all about hooray for autism and then link to the NAS.

Vicky

[Guest guest]

Hi Zoe

Why is it that they are opposed? The NAS in America supports

intervention and biomed. Living with autism is so awful that surely

any stories of a child improving should be celebrated and

investigated.

Sorry but I think the NAS are awful because they perpetuate the

belief that nothing can be done so tens and thousands of children

continue to suffer - that is inexcusable.

Peta--

- In Autism-Biomedical-Europe , " Zoe "

wrote:

>

> Hi Vicky and everyone

>

> Speaking as a member of NAS Council, I can tell you with absolute

> certainty that not everyone who gets involved with the NAS comes to

> view autism in this way.

>

> There are several biomedders (that I know of) on the Council (and

at

> least one who is not 'out' on the Board of Trustees).

>

> Biomed is, however, a controversial subject, and opinions are very

> polarised about it amongst some individuals.

>

> Those people who oppose biomed usually tend also to oppose any

other

> intervention - its not just biomed - its the whole ND philosophy

> of 'we're just different and no-one has the right to change us'.

>

> I and other Councillors have slugged it out in debate several

times,

> and we continue to stick to our guns.

>

> The NAS is changing for the better - but it is a huge organisation,

> and in the way of large organisations, cultural change takes time.

> It is a juggernaut turning on a postage stamp.

>

> I know it is frustrating that the NAS isnt currently more

supportive

> of biomed (and other things) but I can assure you there are some

> committed people on the inside working very hard to bring about

> positive change (on many fronts) in the organisation.

>

> Zoe x

>

>

> >

> > I actually think anyone who gets involved with the NAS from the

> start will

> > come to view autism in this way.

> > Probably moreso since the days when my boys first had a dx.

> They seem to

> > push the acceptance line more than anything else, viewing

parents

> who want

> > their kids cured as somehow not loving their child.

> > I just see autism as a disability, which is what it is, I would

> be no

> > different if my kids were NT but blind, I would want them to

have

> sight.

> > Does this happen with other disabilities I wonder? Are there

> groups of

> > parents out there who see their kids physical disabilities as

part

> of who they

> > are?

> > It seems very odd that in certain circles parents who want a cure

> are

> > somehow less loving than those who don't I would argue the

> opposite to be true.

> > Vicky

> >

>

[Guest guest]

Don't mean to be critical to you Zoe - I'm sure you work very hard.

Peta--

- In Autism-Biomedical-Europe , " peta3366 "

wrote:

>

> Hi Zoe

> Why is it that they are opposed? The NAS in America supports

> intervention and biomed. Living with autism is so awful that surely

> any stories of a child improving should be celebrated and

> investigated.

> Sorry but I think the NAS are awful because they perpetuate the

> belief that nothing can be done so tens and thousands of children

> continue to suffer - that is inexcusable.

> Peta--

>

> - In Autism-Biomedical-Europe , " Zoe "

> <zoet@> wrote:

> >

> > Hi Vicky and everyone

> >

> > Speaking as a member of NAS Council, I can tell you with absolute

> > certainty that not everyone who gets involved with the NAS comes

to

> > view autism in this way.

> >

> > There are several biomedders (that I know of) on the Council (and

> at

> > least one who is not 'out' on the Board of Trustees).

> >

> > Biomed is, however, a controversial subject, and opinions are

very

> > polarised about it amongst some individuals.

> >

> > Those people who oppose biomed usually tend also to oppose any

> other

> > intervention - its not just biomed - its the whole ND philosophy

> > of 'we're just different and no-one has the right to change us'.

> >

> > I and other Councillors have slugged it out in debate several

> times,

> > and we continue to stick to our guns.

> >

> > The NAS is changing for the better - but it is a huge

organisation,

> > and in the way of large organisations, cultural change takes

time.

> > It is a juggernaut turning on a postage stamp.

> >

> > I know it is frustrating that the NAS isnt currently more

> supportive

> > of biomed (and other things) but I can assure you there are some

> > committed people on the inside working very hard to bring about

> > positive change (on many fronts) in the organisation.

> >

> > Zoe x

> >

> >

> > >

> > > I actually think anyone who gets involved with the NAS from the

> > start will

> > > come to view autism in this way.

> > > Probably moreso since the days when my boys first had a dx.

> > They seem to

> > > push the acceptance line more than anything else, viewing

> parents

> > who want

> > > their kids cured as somehow not loving their child.

> > > I just see autism as a disability, which is what it is, I

would

> > be no

> > > different if my kids were NT but blind, I would want them to

> have

> > sight.

> > > Does this happen with other disabilities I wonder? Are there

> > groups of

> > > parents out there who see their kids physical disabilities as

> part

> > of who they

> > > are?

> > > It seems very odd that in certain circles parents who want a

cure

> > are

> > > somehow less loving than those who don't I would argue the

> > opposite to be true.

> > > Vicky

> > >

> >

>

[Guest guest]

Hi Peta

I wouldnt describe the NAS as 'opposed to biomed', I would describe

them as neutral......and keeping an open mind until more research

evidence emerges that supports biomed.

This is the same stance that they currently take on lots of other

interventions - RDI would be another example.

I know that it is the view of many of us (if not most) on this list

and in the biomed movement that there already is enough research out

there to show that biomed is effective as a treatment protocol in

some children.

But I have long held the view (and those in TA will remember from

when I was involved that I was always pushing this) that if we want

to get biomed accepted by mainstream organisations (like the NAS and

government) then we have to play the game by their rules - much as

it rankles - and produce the research that meets their research

criteria. Thats is how other canny campaigners (eg the Multiple

Sclerosis Society) have done it.

Take Research Autism - it would be fantastic to see TA (on its own

or in partnership with a researching organisation) submit a really

well planned biomed research proposal that met their criteria.

I am also sure that between us, we have hundreds of test results

that show the common pathways of biomedical dysfunction in our kids,

and test results that also show what happens when these dysfunctions

are treated. These could be augmented with anecdotal evidence from

parents about how their child's mood/behaviour etc changed when they

were treated.

That is powerful evidence that could be submitted to the NAS, the

Autism Research Centre and Research Autism for comment......and

followed up with a letter to the NAS's Communication magazine

pointing out the commonalities in the documentation and asking the

NAS for comment (especially in the light of their 2005 survey of

parents that showed that biomed was the top priority).

I think you have to meet them on their own turf (which is why I am a

member of NAS Council).

I try to channel my frustration about NAS into action to change NAS.

Dunno whether it will work.....am giving it about another year!

Zoe x

> > >

> > > I actually think anyone who gets involved with the NAS from

the

> > start will

> > > come to view autism in this way.

> > > Probably moreso since the days when my boys first had a

dx.

> > They seem to

> > > push the acceptance line more than anything else, viewing

> parents

> > who want

> > > their kids cured as somehow not loving their child.

> > > I just see autism as a disability, which is what it is, I

would

> > be no

> > > different if my kids were NT but blind, I would want them to

> have

> > sight.

> > > Does this happen with other disabilities I wonder? Are there

> > groups of

> > > parents out there who see their kids physical disabilities as

> part

> > of who they

> > > are?

> > > It seems very odd that in certain circles parents who want a

cure

> > are

> > > somehow less loving than those who don't I would argue the

> > opposite to be true.

> > > Vicky

> > >

> >

>

[Guest guest]

I

think the NAS ARE awful which makes me REALLY really appreciate what Zoe and a couple

of others are doing. I could NEVER take them on. We need people like you Zoe. SARA

-----Original

Message-----

From: Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of peta3366

Sent: 23 October 2007 18:46

To:

Autism-Biomedical-Europe

Subject:

Re: Was: Emma Noble; now NAS

Don't mean to be critical to you Zoe - I'm sure you work very hard.

Peta--

- In Autism-Biomedical-Europe ,

" peta3366 "

wrote:

>

> Hi Zoe

> Why is it that they are opposed? The NAS in America supports

> intervention and biomed. Living with autism is so awful that surely

> any stories of a child improving should be celebrated and

> investigated.

> Sorry but I think the NAS are awful because they perpetuate the

> belief that nothing can be done so tens and thousands of children

> continue to suffer - that is inexcusable.

> Peta--

>

> - In Autism-Biomedical-Europe ,

" Zoe "

> <zoet@> wrote:

> >

> > Hi Vicky and everyone

> >

> > Speaking as a member of NAS Council, I can tell you with absolute

> > certainty that not everyone who gets involved with the NAS comes

to

> > view autism in this way.

> >

> > There are several biomedders (that I know of) on the Council (and

> at

> > least one who is not 'out' on the Board of Trustees).

> >

> > Biomed is, however, a controversial subject, and opinions are

very

> > polarised about it amongst some individuals.

> >

> > Those people who oppose biomed usually tend also to oppose any

> other

> > intervention - its not just biomed - its the whole ND philosophy

> > of 'we're just different and no-one has the right to change us'.

> >

> > I and other Councillors have slugged it out in debate several

> times,

> > and we continue to stick to our guns.

> >

> > The NAS is changing for the better - but it is a huge

organisation,

> > and in the way of large organisations, cultural change takes

time.

> > It is a juggernaut turning on a postage stamp.

> >

> > I know it is frustrating that the NAS isnt currently more

> supportive

> > of biomed (and other things) but I can assure you there are some

> > committed people on the inside working very hard to bring about

> > positive change (on many fronts) in the organisation.

> >

> > Zoe x

> >

> >

> > >

> > > I actually think anyone who gets involved with the NAS from the

> > start will

> > > come to view autism in this way.

> > > Probably moreso since the days when my boys first had a dx.

> > They seem to

> > > push the acceptance line more than anything else, viewing

> parents

> > who want

> > > their kids cured as somehow not loving their child.

> > > I just see autism as a disability, which is what it is, I

would

> > be no

> > > different if my kids were NT but blind, I would want them to

> have

> > sight.

> > > Does this happen with other disabilities I wonder? Are there

> > groups of

> > > parents out there who see their kids physical disabilities as

> part

> > of who they

> > > are?

> > > It seems very odd that in certain circles parents who want a

cure

> > are

> > > somehow less loving than those who don't I would argue the

> > opposite to be true.

> > > Vicky

> > >

> >

>

[Guest guest]

No problem - its good to have an open debate about this sort of

stuff. Thanks for asking about it.

Zoe

> > > >

> > > > I actually think anyone who gets involved with the NAS from

the

> > > start will

> > > > come to view autism in this way.

> > > > Probably moreso since the days when my boys first had a

dx.

> > > They seem to

> > > > push the acceptance line more than anything else, viewing

> > parents

> > > who want

> > > > their kids cured as somehow not loving their child.

> > > > I just see autism as a disability, which is what it is, I

> would

> > > be no

> > > > different if my kids were NT but blind, I would want them to

> > have

> > > sight.

> > > > Does this happen with other disabilities I wonder? Are

there

> > > groups of

> > > > parents out there who see their kids physical disabilities

as

> > part

> > > of who they

> > > > are?

> > > > It seems very odd that in certain circles parents who want a

> cure

> > > are

> > > > somehow less loving than those who don't I would argue the

> > > opposite to be true.

> > > > Vicky

> > > >

> > >

> >

>

[Guest guest]

Hi Vicky

You didnt offend me at all. I understand peoples frustration with

the NAS (and share it myself much of the time).

To address your first point - the tests our kids have aren't

currently recognised (as in they have an official stamp of

acceptance) - I agree that is part of the problem

I remember one time a while ago something Simon Baron-Cohen said

somewhere was annoying me (may have been some new theory he was

proposing) which made me send Philip's test results to him to make

the point that whilst new theories about the etiology of autism are

interesting in academic circles, lots of parents and carers are far

more interested in interventions that can make a difference to a

child's quality of life. I went on to say that scientific testing

has shown that many children with autism have common underlying

metabolic problems (which can be successfully treated in many cases)

and used Philip's test results as evidence for this.

He was able to fob me off because I was sending just one isolated

set of test results. I have often since wondered what would have

happened if someone had been able to collect and send hundreds of

test results, all showing similar things.

If test results arent currently recognised, maybe there is a case

for pushing for them to be recognised? If we dont push, how will

the tests ever gain recognition?

To answer your second point about NAS being 'very much influenced by

the ND movement'........the NAS (and any other organisation that

supports poeple with a disability of some kind) is never ever going

to come out and diss the minority group with the disability that it

is set up to support. Think about it - it would be political

suicide.

There are some very vocal supporters of the ND movement within NAS

Council and NAS Board of Trustees. These people would strongly

oppose some parts of biomed (namely those parts that they would

characterise as intrusive/dangerous).

There are a lot more vocal 'progressive thinkers' on NAS Council and

Board of Trustees. Not all of these would support all parts of

biomed, but many do Some choose not to be 'out' about their

support for biomed. In this group of people there are folks with

autism themselves.

What unites both groups is general agreement that ways should be

found to minimise the distress caused to some people by some parts

of their autism.

For anybody supporting or wanting to promote a particular

intervention, this is a BIG 'in'.

There is not currently agreement on how the distress could be

minimised, but I have had great success using this argument with a

staunch and very vocal participant of the ND movement who is now

actually giving me tips on how to get RDI research replicated

independently.

Naturally the NAS is going to promote awareness and acceptance. And

if Emma Noble can celebrate her child's autism and truthfully state

that she wouldnt have him any other way, then she is bloody lucky,

and not at all reflective of the thousands of parents out there

whose kids are in pain and unhappy because of their autism.

But how will the NAS know about all these other kids in pain and

unhappy if no-one is telling them about these kids (and including

the test results that show the metabolic problems)? We need to keep

reminding them of it, no matter how many times we have said it

before. Keep challenging their thinking - it is the only way that

things will change.

The more people who bang on the door from outside the NAS, the more

it will help us on the inside of the NAS to do everything we can to

bring about change.

Zoe

>

> Apologies Zoe if I offended you, wasn't my intention.

> Are the tests our children have recognized in the first place?

I know the

> whole battery of tests I had done on were rejected completely

by his

> Gastro on the grounds they were not recognized and therefore she

wouldn't even

> be able to read them.

> I also get the impression that they are very much influenced by

the ND

> movement and are not altogether supportive of treatments or

therapies, the message

> seems to be awareness and acceptance.

> The Emma Noble article was all about hooray for autism and then

link to the

> NAS.

> Vicky

>

[Guest guest]

the NAS has fundamentally changed ref biomed since I joined this list

(not that the two things are related!) THey have had a lot of input

and whilst they don't actively support it they do now list it and

discuss it. that is progress. Three years ago it was dismissed out of

hand but there have been success stories and now it's included. so,

credit where it's due.

Steph x

> > > >

> > > > I actually think anyone who gets involved with the NAS from

> the

> > > start will

> > > > come to view autism in this way.

> > > > Probably moreso since the days when my boys first had a

> dx.

> > > They seem to

> > > > push the acceptance line more than anything else, viewing

> > parents

> > > who want

> > > > their kids cured as somehow not loving their child.

> > > > I just see autism as a disability, which is what it is, I

> would

> > > be no

> > > > different if my kids were NT but blind, I would want them to

> > have

> > > sight.

> > > > Does this happen with other disabilities I wonder? Are there

> > > groups of

> > > > parents out there who see their kids physical disabilities as

> > part

> > > of who they

> > > > are?

> > > > It seems very odd that in certain circles parents who want a

> cure

> > > are

> > > > somehow less loving than those who don't I would argue the

> > > opposite to be true.

> > > > Vicky

> > > >

> > >

> >

>

[Guest guest]

Not only that, but I have been told by 's paed when giving NHS test results that they are not comprehensive, well I want comprehensive.

Then there is the problem of getting them to do one or more of their non comprehensive tests in the first place, don't know about others here, but is absolutely NEVER ill, no matter what he would go to the Doctor with it will always be an autism problem.

The tests I did get on NHS were done more to shut me up than them actually thinking there was anything with that warranted them.

All tests including stools always came back as normal, he also doesn't have a problem with any foods at all, can eat anything according to their tests, which has the effect of NHS dietician and Gastro dealing with me like I am completely deluded and part of the problem rather than the solution.

Vicky

[Guest guest]

If you read the National Plan for autism 2004 part of the reasoning

behind delivering a decent health provision is to stop people doing

tests in " unrecognised " labs.....(you get the gist " poor vulnerable

parents etc. etc.).

Perversely if health had delivered everything they should under the

National Plan I probably would not have looked at biomed as on the

face of it he would have had a full medical check, but local NHS

service so lamentable I turned elsewhere out of anger rather than

scientific reasoning....whatever the motivation I am glad to be here.

I agree NAS and Baron Cohen need to be targeted from within but also

on the outside. Whatever the battles that need to be fought over

education, biomed is going to be a much harder battle.

Keep up the good work Zoe

> > > > >

> > > > > I actually think anyone who gets involved with the NAS from

> > the

> > > > start will

> > > > > come to view autism in this way.

> > > > > Probably moreso since the days when my boys first had a

> > dx.

> > > > They seem to

> > > > > push the acceptance line more than anything else, viewing

> > > parents

> > > > who want

> > > > > their kids cured as somehow not loving their child.

> > > > > I just see autism as a disability, which is what it is, I

> > would

> > > > be no

> > > > > different if my kids were NT but blind, I would want them to

> > > have

> > > > sight.

> > > > > Does this happen with other disabilities I wonder? Are there

> > > > groups of

> > > > > parents out there who see their kids physical disabilities as

> > > part

> > > > of who they

> > > > > are?

> > > > > It seems very odd that in certain circles parents who want a

> > cure

> > > > are

> > > > > somehow less loving than those who don't I would argue the

> > > > opposite to be true.

> > > > > Vicky

> > > > >

> > > >

> > >

> >

>

[Guest guest]

It depends who's looking at the test results. Our paed looked at

them and said " normal " , then Dr Fell (also NHS) looked at them and

said " these long term raised eosinophils viewed in conjunction with

him being on the 4th centile for weight, dark circles and pain

avoidant behaviour would say inflammatory bowel disease to me " .

same tests, different interpretation. Dr Heard also interpreted

the less comprehensive NHS results as allergy problems, and that was

almost three years ago now. they do stare very very hard in the

wrong direction for fear of finding something but it's not always

the tests to blame but the ability to combine " insignificant "

findings with the bigger picture IMHO

>

> Not only that, but I have been told by 's paed when giving

NHS test

> results that they are not comprehensive, well I want

comprehensive.

> Then there is the problem of getting them to do one or more of

their non

> comprehensive tests in the first place, don't know about others

here, but

> is absolutely NEVER ill, no matter what he would go to the Doctor

with it

> will always be an autism problem.

> The tests I did get on NHS were done more to shut me up than them

actually

> thinking there was anything with that warranted them.

> All tests including stools always came back as normal, he also

doesn't have

> a problem with any foods at all, can eat anything according to

their tests,

> which has the effect of NHS dietician and Gastro dealing with me

like I am

> completely deluded and part of the problem rather than the

solution.

> Vicky

>

[Guest guest]

That's really good Steph.

actually didn't need any tests to know he was sick. I was pushing for them, because clearly I was the only one interested in why he was losing so much weight, falling down the height percentiles, losing his hair and lack of teeth.

He was seen regularly by 3 paeds, he actually went from the 25th centile down to the 2nd for height! had diahrea 4,5,6, times a day, but these Doctors all thought he was perfectly healthy at least that is what they said.

His paed now supports biomed, gastro doesn't, to be honest I neither follow their dieticians advice or gastro's and declined the Ritalin, Melatonin and Antipsychotics offered by paed prior to biomed.

is so much healthier not seeing the Doctors.

Vicky

[Guest guest]

Hi Vicky my dr says that a child who is never ill is just as worrying

as a child who is alsways ill. I think it is called hyper immune

system. A pterine test will tell you where he is.

Since we have been doing biomed Charlie has been unwell once or twice

a year which is better ( he was also never ill).

Peta-

-- In Autism-Biomedical-Europe , MaddiganV@... wrote:

>

> Not only that, but I have been told by 's paed when giving NHS

test

> results that they are not comprehensive, well I want comprehensive.

> Then there is the problem of getting them to do one or more of

their non

> comprehensive tests in the first place, don't know about others

here, but

> is absolutely NEVER ill, no matter what he would go to the Doctor

with it

> will always be an autism problem.

> The tests I did get on NHS were done more to shut me up than them

actually

> thinking there was anything with that warranted them.

> All tests including stools always came back as normal, he also

doesn't have

> a problem with any foods at all, can eat anything according to

their tests,

> which has the effect of NHS dietician and Gastro dealing with me

like I am

> completely deluded and part of the problem rather than the solution.

> Vicky

>