PETITION - please read!!!

[TuX]

Although I do not agree with the topic,she did say sign the petition if agreeing with it,not forcing everyone to sign it.

 

Re.the petition contents.

I think it is wrong that we are made to look like a burden:

A recent Institute of Psychiatry study shows that the cost of caring for a person with autism is estimated to be ?2.94 million during their lifetime (J�rbrink & Knapp 2001).

And that Autism is a risk:

There are now 1 in 110 children on the autistic spectrum. This is a significant risk to the general population.

 

Cost.

There are Autistics who work and don't need government money,and there are neurotypicals who choose not to work for a number of years and get as much money off the government as possible (Lizzy Bardsley as one example).

Why not campaign against benefits scammers-who can actually help their situation and drain government funds,rather than us,whom did not choose to be Autistic but have just as much right to be who we are anyway?

 

Risk.

We are a risk to the general population?

We are not a disease,and we are not the ones going around demanding NTism be wiped out.

[call me jaded]

My problem was that the very treatments they are asking for already exist and can be obtained on the NHS, what they are NOT are treatments for Autism.

 

If only this were true.

[Lucas]

Can you actually tell me what treatments then are not available on the NHS Jaded?

 

The petition says:

 

Biomedical treatment for autism includes (usually a combination of) diet (eg gluten free/casein free; Specific Carbohydrate Diet); vitamin and mineral supplements to address nutritional deficiencies; gut healing to address gut dysbiosis (overgrowth of bad bacteria and/or fungi); immune modulation to address weakened immune systems; and the repair of impaired detoxification systems.

 

Which can come in many forms, some are quackery but there are legit treatments that are prescribed by doctors(and even though Homeopathy is quackery, four in ten doctors still prescribe that).

 

Please clarify a bit instead of scoring personal points with vague mantras.

 

Meant to say that four in tend doctors will refer patients to a Homeopath, not that they will actually prescribe Homeopathic medicine.

[baddad]

Can you actually tell me what treatments then are not available on the NHS Jaded?

 

Hi Lucas -

Don't know about the other stuff, but gluten/casein free dietary supplements/foodstuffs are not GENERALLY available on scrip for people with ASD's... The wording about who it can be prescribed for is just about vague enough that a really sympathetic GP MAY come down in your favour, but most won't. They are available for coeliacs, but that's not the same thing...

 

I didn't consider signing this petition for the reasons I stated earlier... had I looked more closely at the wording TUX highlights, my original post would have been much more strongly worded.

L&P

BD

[call me jaded]

Sure, Lucas. My son is 11, so things may be a little different now.

 

He was referred to a paeditrician at 11 days old because of floppy muscle tone. He underwent about four years of testing, including EEGs, an MRI, very extensive genetic tests, a skin biopsy, some xrays, hearing and sight tests, saw three paediatricians, a neurologist, and, of course, had several visits to the GP for the countless infections he was unable to shake off. The only treatment we were offered, ever, was antibiotics. That's despite raising his diet, poor weight and height growth at every consultation we attended (well over 30 of them). He had no diagnosis. We stopped searching for a reason for him being the way he is as soon as we got him into an appropriate educational placement.

 

Reading a newspaper article by chance I came across a conditon called dyspraxia. An hour surfing the Dyspraxia Foundation website and I knew I had at least part of the answer. At our next review with the paed I asked for a referral for OT and was told there was a three year wait - we never did have a formal assessment. When I got my four sessions I asked for some therapy rather than lose time recording what I knew already.

 

Back at the Dypraxia Foundation website I started reading about Madeleine Portwood's involvement with fish oils. Back to the GP but she couldn't offer me anything. After 6 months' research (mostly reading up on negative side effects) I decided to try what MP had used in her trials. The results were immediate (same day) and within a week (having told no-one what we were doing) we got positive comments from school , the bus escort, my neighbour.

 

So then I went back to my new GP to talk about the Sunderland Protocol and he said he couldn't do anything for me. He needed double-blind peer-reviewed research and for a diet that wasn't really going to happen. No drugs company money to fund it. He did say he would refer my son to a dietician, but the appointment never came through. My neighbour is a nutritionist and she's given me loads of advice and passes on her trade discount for supplements.

 

So we started the diet three and a half years ago and my son has not been sick for more than a day and has not seen a GP since.

[Zemanski]

My experience of trying to get support for my own and for Dot's problems has been similar - antibiotics triggered Dot's bowel problems in the first place so we've never been offered those again.

At the moment she's supposed to be on lactulose which is prescribed (the only thing that's ever been prescribed in 8 years) but if we give it regularly she gets the runs and if we stop she gets tears - can't win.

When I try to talk to the consultant he just sits there smirking because she 'looks healthy and her growth is OK' and I know he's going to sign her off next month but this time I mean to really speak my mind.

For myself, I have had all sorts of tests but apart from an antispasmodic I've never had any real support. I did see a dietician but that was pretty useless to be honest. The NHS doesn't see bowel problems as important whether you are autistic or not.

 

Zemanski

[kirstie]

Zemanski, i can really relate, ihave IBS and get antispasmodics. The pain when i was a teenager in particular was horrendous. so big <'> to you.

Slightly off topic there but just wanted to pass a hug on!

[Lucas]

I did specify the treatments listed in the petition Jaded, though I should have been a bit clearer on the post before that. Your own problems with the NHS mostly outline a failure to deliver services, not an absence of them. I wonder what your GP would think of Homeopathy; it's working proof that no GP 'needs' solid evidence of it's merit to prescribe.

 

Baddad, There's that sentence again: "..available on scrip for people with ASD's.."

 

Do ASDs matter? Does the presence of Autism affect in anyway wether or not a person recieves a treatment? If you've read about the Auton case in Canada, you'd have some idea that the position of Canada's Autism Community included that Autistic children(or children WITH Autism) were being discriminated against recieving treatments because they were Autistic. It was a lie, it was a flagrant distortion of the truth; which was that Autistic children were refused a 'medically neccessary' treatment on Medicare on the grounds that ABA isn't a medical treatment at all. But they wanted it to look to the public like Autistic children were being refused everyday treatment available to anyone else because they were Autistic.

 

I told my GP on my last visit that I believed I had a wheat intolerance. I described to him heartburn, lethargy and an upset stomach after eating certain kinds of food like pizza, weetabix and certain biscuits. My GP doesn't like Homeopathy and even denies that garlic has any anti-biotic properties(after many studies have supported it in fact does, he still asks awkward questions). He was still considering prescriptions. Maybe he's a bit schizoid and I'm just lucky but I'm fairly sure many GPs are like him(the six in ten that don't refer people to Homeopath practitioners).

 

Just because the people you deal with are incompetent doesn't mean the system is screwed(except maybe the management department that does the hiring).

[call me jaded]

Lucas we've not been offered any treatment at all, never mind those on the list. We haven't been to the GP for a long time, so I've no idea what he offers now. I took my daughter about a year ago and saw a newly qualified locum who rubbished the link between milk and ezcema.

 

What I do know is that the kind of hair, urine and sometimes stool analysis required are not available anywhere in the UK, never mind on the NHS.

 

I personally believe the NHS is one of the most discriminatory organisations there is. As well as specifically no prescriptions of GF food for autism, access to OT for autism where I live is limited to a referral for those under 7 (average age of diagnosis being 7, so that's half the people off the list). The OT provision for children is 1.8 full time equivalent for a borough with 40,000 children.

 

Even sitting outside a meeting for childrens services where I live a senior officer from CAMHS told me they had re-drafted their criteria 'to limit the numbers being referred, if I'm honest' was exactly his words. They do it all the time to ration a limited resource. Similarly no speech therapy for those with the most need because that would take up long-term resource and the outcome figures would drop - they're only interested in quick fixes.

 

At the school I'm a governor at I meet with the NHS to agree Service Level Agreements. We have managed to get some additional speech therapy for our autistic pupils because the PCT recognises the under-provision for such children, but we haven't got more for the other pupils in the school.

 

Failure to deliver services, or absence of them? Semantics, really.

[mossgrove]

Natasha

 

I hope you haven't been too upset by the reaction to this posting, I know you never intended to get the reaction you did. Hopefully if you read this posting, you will understand why it happened, and I hope it doesn't put you off posting in the future, we are a very friendly bunch really!

 

I have been around Autism discussions for a while now, I have seen a few threads 'flare up' in the way this one has done, and I think this is the reason why.

 

On the one hand you have someone who, usually because they have seen benefits with their own children, has a strongly-held belief in the value of a particular treatment. They therefore strongly support the promotion of that intervention, and support/become involved in campaigns to promote it's avaiability/use.

 

Where things start to come off the rails is because some of the groups involved in promoting these treatments make some highly questionable/offensive statements along the way. The groups typically use a campaigning technique that explains how horrible and debititating, expensive and unpleasant it is for children and society at large that people are affflicted with Autism, which then leads to a pitch that says with hard work and money we can work together to defeat the scourge that is autism.

 

Quite understandably many people with autism and their families find this approach offensive. While most people with Autism and their families are willing to explore things that make their lives easier (Including dietary interventions if they help) they quite righly feel that they are different and not suffering from an illness that needs curing or defeating. The idea that Autism is a risk to society is preposterous and wrong.

 

The person who posts the original message on the forum will in most cases not intend their original message to come across in that way, and will be startled and dismayed by the reaction to the posting what they thought was simply a request for assistance in campaigning for a treatment that is genuinely valuable to be made more widely available.

 

A debate then ensues where one 'camp' is saying 'How can you criticise me for wanting the best for my child, these treatments do work and it is important people have access to them' and the other camp saying 'How can you come here and make these offensive judgements about people with Autism'

 

To go back to the original post the offence was caused not by the assertion that Biomedical interventions such as the GF/CF diet should become more widely avaialable to those parents/children that want it, but by the judgements made in the supporting argument in the petition. It is for that reason that I am not able to sign the petition, I cannot endorse the arguments within it or the way that the authors of the petition view Autism.

 

Simon

Edited December 22, 2005 by mossgrove

[asereht]

Sorry Natasha I will not sign ............. I don't think you should have come to this forum with this petition.

 

 

Sorry

[Lucas]

We're going around in a bit of a merry circle Jaded.

 

Once again you keep refering to treatments and services for Autism when I have specifically stated that those services listed in the petition are available on the NHS when Autism isn't mentioned.

 

It is not semantics, there is a very significant reality difference in absence of service and failure to provide.

[call me jaded]

To the end user it really does not matter whether there is lack of provision, or a failure to deliver: the end result is exactly the same. That is what I meant by semantics.

 

The entire NHS looks at the primary diagnosis before deciding whether you can access services. That is why the disabled in general have very poor mortality rates for reasons aside from their disability. My friend with a child with Down's Syndrome gets the exact same answers from her GP: it's part of his condition.

 

We have had no treatment at all offered for serious gut problems which we raised at every consultation since my son was 4 months old.

 

The tests that we paid for ourselves were with laboratories outside the UK becuase they are not available here, whether privately or publicly funded. The tests are to establish metabolic function. So, in my experience, the tests are not autism-specific and not available in the UK.

[Malika]

Hi to all

 

I have not been on the forum for some time being so tired after the last days at school for my son were a bit difficult as approaching Christmas his all routine was muddled up and his brain became muddled up too.

 

Now I had a ggod reading of the petition and decided not to signed it:

the reasons being

 

1) I feel uncomfortable about the wording of it as if there is only one way to go for research

 

2)The one promoting the research do not seems to give so much importance about how to conduct the research an why but just exclusively to promote a very narrow aspect of it.

 

3)Signing a petition requesting only a certain aspect of research to be funded is a message which says this is the most important aspect in autism, and I am not convince of this.

 

4) as so far nobody understand the reason for autism with certainty the first step I think should be to petitione for an increase in spending for a various aspect of research and various way to releive some of the difficuties autistic people experiences, as we know every autistic is different and if the guts problems in people with autism occurs it is not necessarly a generality and not necessarly the reason for their autism it may be that feeling discomfort just make them worse because of sensory integration difficulties , leaving out people who are autistic but do not have guts problems is not going to help the cause of autistic people, and will only give the impression that their problems have been addressed while they won't be.

 

5) While this research is painted as an help for autistic it may just come to be a way to prove how important are vitamins and mineral supplementsto get them on the NHS counter....

 

Now my son suffer from guts problems but far less than his sister who is NT. I have tried various use of vitamins and mineral with him which have proven to be useless the only thing which seems to help are eating lot of fresh fruit every day and to releive him from stressful situation which let me stuck at home most of the time during the holidays.

 

Well sorry but I am not convince..

 

Malika.

[littlenemo]

Welcome back Malika

The batpack has missed you, and you may have missed the 'advent calendar'.

 

I hope that things are a bit easier now that term's over, and you've been able to give your lad a bit of normal routine.

[Malika]

Hi,

 

Thanks little nemo things are better now with my son but with the change of routine, a kind of flue then a cold I think he was on his worse autism behaviour since many months hitting himself and unable to adapte to any kind of change, it really upset me as he seems that he was coping fairly well at school since september. May be just a reminder ...............

Well I have missed a lot of the advent calendar but I am catching up very quickly.....it is really great! and H his helping me, he is so good with any games must say he gets many hours training a day...

 

Malika.

[alibaly]

Sorry Natasha I will not sign ............. I don't think you should have come to this forum with this petition.

Sorry

 

 

Well curing or defeating autism is not something I'm interested in and never have been but there must be members of this forum who think its possible and would like to at least try. Their opinions are as valid as everyone elses and I suspect they may be glad Natasha came to the forum with her petition, all things considered though I doubt very much they will openly voice their support of it. Its a shame really.

[call me jaded]

Well curing or defeating autism is not something I'm interested in and never have been but there must be members of this forum who think its possible and would like to at least try. Their opinions are as valid as everyone elses and I suspect they may be glad Natasha came to the forum with her petition, all things considered though I doubt very much they will openly voice their support of it. Its a shame really.

 

 

I do it

 

I don't care if you all think I want a cure, either. I have tests that show my son (for whatever reason) has a malfunctioning metabollism. I am obliged to try to do something about it. That's really all there is to it.

[Guest flutter]

maybe we need to agree to differ here

we all love our kids, and like any there are bits that may need helping suporting or retraining

can we please finish this now tho, has the originator been around to see all these responses??

tc all

C xxx

[baddad]

Well curing or defeating autism is not something I'm interested in and never have been but there must be members of this forum who think its possible and would like to at least try. Their opinions are as valid as everyone elses and I suspect they may be glad Natasha came to the forum with her petition, all things considered though I doubt very much they will openly voice their support of it. Its a shame really.

 

 

Hi alibaly -

I totally agree with you in principal, but i think maybe (and forgive/correct me if i'm wrong) asereht's point had more to do with how the petition was worded, and with how it was presented. Certainly the response to my own intitial comments seemed very (and unnecessarily) aggressive, and subsequent posts by Natasha compounded this... I for one always try to promote the fact that the forum should be 'agenda' free, and a place for open and civil discussion. On the odd occassion that I personally get on my high horse (and let's face it - every one off us are likely to have opinions that matter so much to US that we sometimes can't see the wood for the trees), I usually play the 'agree to differ' card, and do my utmost to make sure that however strongly my opinions are felt they do not become an excuse to attack the beliefs of others.

I hope nobody feels they are unable to voice their support for this - or any other - petition, and certainly my own response is supportive of the holistic ideology that is a key principal of the petition, just not of the value judgements inherent within the content...

 

Finally, I think flutter has hit the nail on the head, it's perhaps time to let this one drop, as the original poster seems to have lost all interest...

L&P

BD

[asereht]

Bad Dad said.....i think maybe (and forgive/correct me if i'm wrong) asereht's point had more to do with how the petition was worded, and with how it was presented.

 

 

 

 

Exactly!

 

 

Theresa

Edited December 24, 2005 by asereht

[Lucas]

My problem with the petition is it's stated goals which are directly tied to how it's worded: it is not careless or an unintended mistake by the author but a sincere expression of their opinions and intentions.

 

I can not agree to disagree with harm to myself.

[alibaly]

Jings crivens and hep ma boab, that'll teach me to type in a hurry so let me make myself clearer 8>). I wasn't referring to any post other than the one by theresa and no, it didn't come across to me the way it was intended to.

 

 

My comment

 

'all things considered though I doubt very much they will openly voice their support of it. Its a shame really.'

 

 

is a general observation based on many years of seeing so called 'curbies' not coming forward, regardless of how curbie friendly a general forum is or likes to think it is , for fear of getting it in the neck or even worse being told they don't love their children.

 

Sorry for the confusion.

 

 

I'm off now to fry up a few mince pies.

[baddad]

Sorry for the confusion.

I'm off now to fry up a few mince pies.

 

Let me guess, one of our Scottish members!? Hope you're going to batter them before deep frying

[Lucas]

A fear that seems to be well-unfounded. I never stop reacting with suprise whenever a curbie resorts to the ultimate "I love my children!!!" as if anyone ever said they didn't. Their whole mindset seems to be that because they love someone, then it's impossible even by unknown consequence to harm them.

[baddad]

A fear that seems to be well-unfounded. I never stop reacting with suprise whenever a curbie resorts to the ultimate "I love my children!!!" as if anyone ever said they didn't. Their whole mindset seems to be that because they love someone, then it's impossible even by unknown consequence to harm them.

 

Or by an act of omission, however well intended that non -intervention might be...

[Kris]

I think (and as per a few of your requests) that this topic has run it's course now and is closed. Kris