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natasha778

PETITION - please read!!!

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Sorry, but I can't agree with this. While treating autism 'biomedically' may alleviate some of the comorbid problems in some autistics, there is too much evidence of genetic and brain structure differences to blame it all on the digestive system.

 

And 'Autism is Treatable' is just a bit too close to 'Autism is curable' for my liking.

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Hi natasha -

sorry, but while I agree that dietary interventions can be of help to some people on the spectrum (my own son follows a gf/df diet), I've got to say that I completely disagree with the completely over the top claims made by some groups that advocate for it. I don't know enough about you or the groups you represent to offer my support...

I Hope you're not offended by that, but i would ask you to consider that the negative portrayal of autism is something that has the potential to effect EVERY autistic person, regardless of their position on the spectrum (depending on you POV of whether that is relevant or real in the first place) or whether some of their symptoms might be exacerbated by dietary intolerances.

Auriel, I guess you disagree with Natasha's POV. That's fine, but please offer her the same consideration and respect you'd expect when voicing your opinions... anything less does you BOTH an injustice.

L&P

BD

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I don't know, nemo. My son had horrendous gut problems and fell off the bottom of the weight and growth charts and STILL my paed told me it was OK, that was how he was meant to be. I just wonder where his development would have been if my concerns had been addressed when we first raised them, at about 4 months old. I'm a big believer of the gut/brain connection. There is ample research supporting dietary intervention. This should be mainstream medicine, but there's no drugs company to push it out there.

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I'm a big believer of the gut/brain connection. There is ample research supporting dietary intervention. This should be mainstream medicine, but there's no drugs company to push it out there.

Me too, it makes sense that a malfunctioning gut can affect brain chemistry (and so development), but I believe that there's more to it than just digestive malfunction.

There are members of both Zemanski's and my families with lower gut problems or AS traits, but it appears that the more of one, the less of the other. Not exactly scientific, I admit, but it makes me wonder if the genetics aren't just affecting the digestive system, but also brain development.

 

However, my cynical gut (sorry) reaction was that the promoters sound like they are a drug company trying to get the NHS to fund their research :huh:

 

Of course research and treatment should be funded, the claims just seem a bit too strong for my tastes.

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Interesting that only dietry interventions considered. Whilst these are undoubtadly important there are many other clinical interventions that may be appropriate.

 

Other areas that should have been added to the include

 

visual interventions - my area - so I am biased but results we get are

often amazing,

auditory interventions

neurofeedback

proprioceptive interventions

 

and there may be many more.

 

I would feel more comfortable if the call was for for funding for a person to be responsible for evaluation of each area / method of intervention and these could be costed, rigorously tested and results evaluated. These then should be compared to current interventions (and with each other) and best route forward developed. There is not an unlimited pile of money to be used, it should be used in the best possible way and current prctice seems to waste enormous amounts whilst ignoring relatively low cost methods that may give better results.

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that was one of my gripes - my family lives with both autism and gut problems but there is so much more to it and I feel putting all your eggs in one treatment basket like this excludes many people with many problems and could actually have a negative impact on the value placed on other interventions such as lenses, therapies, etc.

 

 

I also don't like the negative view of autism which is something I feel quite strongly about - not that I think it is necessarily a positve thing but that in viewing the condition in such a negative light it places the people with the condition in an equally negative light.

 

Zemanski

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I haven't noticed any connections between diet and my dd's autism so I think this is irrelevant to her. I know there are many people who are affected by autism to whom dietary changes make a difference but in her case I think not. My biggest concern is that if I started messing with her diet she would end up eating nothing because she is so fussy as it is, I can't get her to eat new things so her health would suffer more by trying to exclude things. She is healthy though, growing normally and her physical development couldn't be better so I can't see any reason for changing her diet.

 

In her case I believe that there were genetic links (2 of her fathers' cousins have AS children) made more severe by the problems I had giving birth to her, emergency c-section after 36 hours of horrendous labour, she was in distress, they had used forceps and ventouse on her and after she was born she had the most horrendous bruising to her head and face. If that had nothing to do with it then I'm one of Santas elves! :rolleyes: If it is true then she was brain damaged which can't be cured.

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When I posted the original link I had no intention of starting or participating in a debate. There is the petition. You read it. You agree with it, you sign it. You don?t agree with it, you don?t sign. Dead simple. But I now find some of the above posts so perplexing that I have to comment.

 

 

 

Baddad,

I find your position the strangest of all. You say your son is on gfcf diet, and it works for him. You also say it works for some other ASD individuals. What about other dietary interventions? What about SCD, or sugar free/candida free, or oxelate free, or phenol free diets? If gfcf works for some, why wouldn?t these other diets work for some other individuals? Or why wouldn?t some of the diets work even better in combination? Wouldn?t you want to find out? Wouldn?t you want to know the mechanism of why the gfcf works on your child? Or would that be too politically incorect? The less we know the better?

 

I see from your other posts that your son is taking fish oils. So obviously you agree the fish oils do have some function on workings of the brain, directly or indirectly. Don?t you want to know the mechanism, the reasons these work? And possibly, along the process, stumble across some other things that might work even better? If you agree that fish oils influence the workings of the brain, why would you disagree that other things e.g. high doses of vitamins b12 or vitamin C might have a similar, or even more powerful function, directly or indirectly? Where do you draw the line? WHY do you draw the line?

 

It seems to me that yes, you do want your child to function better, but you are afraid that doing so might offend someone. Weird! If I had to chose between making my son higher functioning and stepping on someone?s toes? A no-brainer, really.

 

Or is it maybe that going deeper in the biomedical (and yes, the diets and fish oils do count as biomedical treatmens, in case anyone is wondering) direction is too outside your comfort zone? The risk of failure or ridicule is just too big there? Were you always taught to listen to authority, the establishment? If your GP told you that yes, there are now more dietary and other interventions our there that might help with some symptoms, and some of them might help some of the individuals lose their dx completely, would you believe him/her? Or do you wish getting the truth out never happens just in case it might offend someone? Weird.

 

 

 

 

Littlenemo,

You say �?there is too much evidence of genetic and brain structure?�. ??? Where is that evidence??? Can you name the papers, the researchers? I am really, really interested in this one, please forward the information. I have been researching, sourcing, and reading scientific and academic papers on autism for months and months and have not come across one such paper.

 

You say �?while treating autism 'biomedically' may alleviate some of the comorbid problems in some autistics..� Where do you draw the line? What are the SOME treatments that work on SOME autistics? Don?t you want to find out what those SOME are exactly? And WHY they work, when they do? Or would finding that one out be too politically incorect, are we again afraid of stepping on someone?s shoes. Weird.

 

 

 

Auriel,

Yes, very funny. Very funny indeed. I haven?t stopped laughing since I realised my son was autistic. I?m still bursting with laughter. In your face. LOL.

 

 

Natasa

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Littlenemo,

You say �?there is too much evidence of genetic and brain structure?�. ??? Where is that evidence??? Can you name the papers, the researchers? I am really, really interested in this one, please forward the information.

 

You say �?while treating autism 'biomedically' may alleviate some of the comorbid problems in some autistics..� Where do you draw the line? What are the SOME treatments that work on SOME autistics?

 

 

 

 

Auriel,

Yes, very funny. Very funny indeed. I haven?t stopped laughing since I realised my son was autistic. I?m still bursting with laughter. In your face. LOL.

 

 

Natasa

There were several papers and much discussion on the neurological differences between AS and NT on the recent AWARES conference, and some discussion of them here. I'll try to find the threads concerned, but would strongly suggest spending some time on awares site for further information on the wide range of possible causes and treatments.

 

"Where do you draw the line?" Where treatments don't work, obviously

"What are the SOME treatments that work on SOME autistics?"

Well, for Com, the gfcf diet made no difference, nor did sugar-free, while I know kids for whom it makes a big difference. And this is my point. From my experience (rather than political correctness) dietary solutions do not work universally across the spectrum and the petition implies that they do. That's all. My objections are solely concerned with the tone and narrow focus of the petition. I totally agree that there should be more reseach and funding into all aspects of ASDs, as I said before, and I'd be amazed if anyone here would dispute that.

 

It is a bit naive to start a thread on a discussion forum and then claim "I had no intention of starting or participating in a debate." That's what sites like this are all about - the free exchange of ideas and information. I'm sorry if I offended you, that was not the aim at all, it's just that having been told by 'curebies' that I (with AS) shouldn't be who I am, I tend to get defensive when it's implied that I should be put under 'treatment'. After all, modern physics wouldn't exist if Einstein had been treated.

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Hi Natasha -

 

I think my post was fairly clear about my belief that dietary interventions can be helpful to some individuals...

I thought I was also quite clear in saying that I didn't object to the petition directly, just that i had concerns about those who might be delivering it...

Dietary intervention has been promoted as a CURE for autism in certain quarters. It isn't. Further, i have found groups who DO promote it as a cure to be quite militant in their approach, and their treatment of those who might ask perfectly valid questions to be - at the very least - objectionable. I'm not pointing the finger here, but i would ask you to take another look at my initial response, and then have another look at your own post responding to it...

As to the suggestions that I might be responding out of 'fear of ridicule' or some misplaced sense of complacency/fear of authority :lol: :lol: :lol:

 

I'm not going to jump in FOR nemo, 'cos he's big enough and ugly enough to do so himself, but if you have been reading sceintific/academic papers on autism for months and haven't come across any information about genetic predeterminants and/or differences in brain structure you really HAVE been selective in your choice of reading material! Perhaps you need to review your sources? It might be coming from groups or individuals who have already made their minds up, and who pass on the stuff that fits that preconception... it's a trick the medical profession learned years ago, for sure, but two wrongs have never made a right in my philosophy!

 

After posting my original response, I did take the trouble to look back over some of your earlier posts, to see if there was anything there that would make me more comfortable about signing the petition...

I found a link to something called DEFEAT AUTISM NOW or somesuch, and that was enough for me...

Your vitriolic attack of those who had the audacity to question the SOURCE (note that - not the CONTENT) of you petition hasn't exactly reassured me in any way...

Sorry, natasha you asked If i wanted to sign, i didn't... i took the time to explain why i felt that way, and was open to an adult response addressing those doubts.

I hope your personal crusade brings you what you're looking for, and i will happily endorse any petitions that promote an open minded policy regarding causes, potential treatments etc...

L&P

BD

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Baddad,

 

in your signature you quote Dr Bernard Rimland, who is the founder/father of Defeat Autism Now movement. (DAN! by Autism Research Institute http://www.autismwebsite.com/ari/index.htm)

Isn't that ironic.

 

Natasa

It's a great quote, isn't it? And as true today as it was then. One piece of information percolating up from THIS parent is that you can't 'cure' autism.

L&P

BD

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:o Baddad are you percolating again :sick: ..........wiffy woo, curry last night by any chance?............just thought I,d lighten moment with my wit :dance:

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I wouldn't think dietary stuff would make much of a difference to me. I have a healthy diet and gut, and I don't think I've ever really had gut problems down to anything but stress or illness. I am a bit pudgy I'll admit :unsure:

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I think that there are a great may factor that go into the ASD pot and I do believe that diet and supplements can play there part. I am about to find out more about this in the New Year because my own two sons 'DO' have problems with their gut and other health problems that I would like to be able to improve for both of them.

 

But the bit that has always worried me is the 'cure' factor because I do not think that you can cure autism. I was personally shocked rigid the first time I came across DAN and to a certain extent I still am. While I am willing to explore any avenue that will improve the health of my sons I have never felt at war with either of then and have no desire to defeat them. I say defeat them as they are both autistic. And DAN stands for Defeat Autsim Now. I find the wording very offensive.

 

At the risk of inflaming this even further - but when has that ever stopped me - I find the attitudes of the Biochemical Brigade just as worrying as the ABA Brigade. It's like they have all seen the light ,and the colour of the light, and we all have to see it in just the same way that they do.

 

The establishment has never sucked me for one in. My knowledge of mobile phone technology alone, has made me realise just how many unsafe environmental factors we take for granted as being the norm on a daily basis. But what amazes me is that any movement like the Biochem and ABA are all pedalling their solutions in the way that the establishment tells us that 'IT' is always right and how wrong we are to question it.

 

If the pitch were less hysterical then maybe the uptake would be far greater.

 

Off with my head - :star: Sorry I can't find a smilie for that.

 

Carole

Edited by carole

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Natasha,

 

As a Moderator I feel the tone of some of your posts is unnecessary, especially to Auriel (who is my son).

 

Bid :bat:

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I will not be signing the petition and I urge everyone else to not do so either.

 

There isn't actually any irony in quoting something Rimland said, I mostly agree with this particular statement of Rimland's but that doesn't mean I think he speaks the gospel on Autism.

 

Assuming that those who created this petition believe Autism is treatable biomedically, then the very problems they are facing are of their own making and these problems of their making have harmed Autistics. One stand-out reason why the UK is far more progressive on Autism(aside from a completely neutral NAS) than the rest of the world is because parents got sick of taking their children to the doctor and the doctor fobbed them off with "Oh, this is normal in Autism, but Autism isn't treatable so there's nothing we can do."

 

But this gave them two choices: They 'treat Autism' biomedically and successfully to 'prove' that 'Autism is treatable', or they recognise that there is no evidence saying that biomedical problems are not at all a part of Autism. Currently, only in the UK have a substantial number of parents realised the second is more valid whilst the first is just circular logic: for it to be proven true, it must be assumed to be true, therefore the flawed reasoning is it's proof of it's truth.

 

Those who are supporting this petition just don't realise that if they seperated the concept of Autism from the real biomedical afflictions of their children, they would be actually getting the same help for them as NT children get. They may be Autistic, but Autism isn't causing anything.

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I'm going to put my opinion here. :fight:

 

Asperger's Syndromw is a very real thing. However, I don't see it as a problem, I see it as a difference in personality. As with everyone's personality there are some 'problems' that come with this, you can *improve* the problems but not cure them like that.

 

It's all part of my extreeeeeeme personality :bat: (I still think that looks like Catwoman).

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I agree totally that DAN! is an ill-chosen acronym. Having worked for a couple of US companies I would say this is a cultural difference between the US and UK.

 

Dan! are saying their children are not autistic, but toxic.

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Yeah, America has a tendancy to cling onto dogma when inappropriate, doesn't it? And then they have hippie stuff like... the Atkins diet coming out of it when the dogma is better, and the new stuff is a load of crock.

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I have irritable bowel syndrome. I've had it since I was in my early teens. It's a pretty painful and inconvenient condition which rears it's ugly head whenever I'm under stress. It has led to missed exams, the shakes due to severe pain in interviews, poor performance in jobs, holidays aborted, miscarriage (probably) ......

 

three years ago - when we were going through tribunal with Com and I had that really stressful teaching/IT job I've mentioned elsewhere and we were hugely in debt after buying a house we really couldn't afford to give Com the sort of environment we felt he needed - I was in hospital with it. The doctors thought I had bowel cancer. I had attacks that left me screaming on the floor unable to move with sweat running down my body for hours at a time and bleeding that lasted days after.

 

I tried everything, diet, acupuncture, homeopathy, anti-spasmodics, nothing worked.

 

so I changed my environment by leaving my job and after the tribunal things started to get better.

 

I now lead an almost normal life - I certainly couldn't before.

 

perhaps this is the crux of the matter, why we talk so much about diet, environment, clothing, etc.?

 

how can we support our children in their autistic lives when they can't get past these debilitating problems? For some people they really are disabling in themselves.

 

we are not talking about curing our children's autism as such (although I know there are people who believe they can do this) but about making their lives livable and enjoyable.

I want to see my children happy. I have experienced the devastation of bowel problems first hand and know what life has in store for Dot (NT) if I don't help her out and find a way to control them if not cure them, perhaps then she will avoid the pain I've had and enjoy every moment of her life that she can.

 

so we look at our autistic children and we don't see the autism alone but the combination of things that seem go with it too, their 'comorbids', and we see them as part of the autism because, rightly or wrongly, we cannot separate out the autism from the comorbids because we cannot see past them because they can hide a child's being so effectively and create such devastation in their lives.

 

perhaps we ought to be looking to reveal our children's true autism, perhaps pure autism, free of comorbids, is a good thing but I don't know a single parent or adult with an ASD, except maybe you Lucas, who has managed to really conquer the comorbids enough that they are free to see only the positives.

 

good luck to all those that are doing their best wub.gif

 

I posted this on another thread and it seemed relevant here as it expresses what I feel about interventions for bowel problems.

 

In our house the NT girls have bowel problems the AS boys do not.

If they did I would certainly look to treat those problems and try to cure them but I would be treating what I see as a comorbid not the autism.

 

I have a great deal of respect for those who manage to stick to the GF/CF diet and go to lengths to treat their children's bowel problems and I do think the NHS should support that but not at the expense of other treatments and not as a cure for autism

 

Zemanski

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Lucas,

 

I cannot believe the amount of malice in your post.

 

My son has been helped a lot by biomedical treatments. He is a much, much healthier and HAPPIER child than before the biomedics. And yes, less 'autistic'. However hard it may be FOR YOU TO SWALLOW, I now have my living, breathing 'proof' to my 'assumptions': my lively, bubly, pointing, waving, sociable, aware, responsive, playful, cuddly, testimony that biomedics work, right in front of my eyes twentyfourseven.

 

To say that what my son and my family see and live and breathe every day 'circular logic'? Insulting.

 

To deny my son, and others that come after him, that opportunity to flourish and become his true self, is selfish, to say the least. But to urge others to do the same (not to vote) is horrific.

 

Sincerely,

Natasa

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Auriel,

 

your first post did leave me with the impression that you were a crue and hartless individual, which I now see was probably not the case. I'm sorry about the harsh response.

 

Natasa

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I would only urge people to only respond to the petition if they believe in what it supports, I haven't signed it.

 

We have tried several diet interventions with my son and none have worked. I am pleased it has worked for your son, you must be thrilled. I do find your responses to the people on this forum rather rude, including those with Autism and those with children/family on the spectrum.

 

The way someone put it to me last week did make me think. If these children are intolerant to certain foods, have chemicals which are causing issues, then are they Autistic, or just intolerant to X Y and Z which causes them to display behaviours and traits which are similar to Autism.

 

I am suprised the government do not support research into these issues, all of the medical appointments and benefits, from DLA to Social Services Care, special needs school places, statements, the list is endless, it would save them money on if they could 'cure' some of these children and adults, you'd think they would jump at the chance to research into these possible cures if there was sufficient evidence to prove they have any affect, or maybe it is because they don't have significant evidence that they don't.

Edited by lil_me

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Natasha

 

It appears that there may be more than one cruel and heartless person posting here. The people who you are waging war with are autistic - just like your son. Try and show an understanding of the conditon please.

 

Carole

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Lil me you said I

am suprised the government do not support research into these issues

 

Actually they do. When Stephen Ladyman was Minister for Community Care(just after his stint as Chair of the All Party Autism Group) he made a statement that quite specifically states that people with autism should also receive the care and attention that any biomedical condtion that they requires.

 

It may not be much in the grand order of things but it was said, and he is a Government Minister

 

Carole

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Guest GILBO!

Natasha wrote: My son has been helped a lot by biomedical treatments. He is a much, much healthier and HAPPIER child than before the biomedics. And yes, less 'autistic'. However hard it may be FOR YOU TO SWALLOW, I now have my living, breathing 'proof' to my 'assumptions': my lively, bubly, pointing, waving, sociable, aware, responsive, playful, cuddly, testimony that biomedics work, right in front of my eyes twentyfourseven.

 

Ever think that watching your son 24 hours a day 7 days a week may make him want to always appear this way?

 

Just a thought.

 

To deny my son, and others that come after him, that opportunity to flourish and become his true self, is selfish, to say the least. But to urge others to do the same (not to vote) is horrific.

 

However, by urging people to vote you are attempting to influence their desicion everybit as much as this Lucas fellow is, whats to say your not urging people to do something that will have negative affects? Obviously you believe it has positive affects, but you also believe Auriel to be heartless, when he most likely gets blood pumped to his veings 70 times a minute.

Edited by GILBO!

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All,

 

We are going a little bit off topic now. Please lets bring it back again.

 

And whilst on the subject, we are keeping a close eye on this thread which is a hairs breadth away from being closed now.

 

Kris

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Natasha,

 

If there is any malice in my post then it's little more than your own projection; you've said things that contradict the notion that you may actually have read it as a whole. At no point did I advocate refusing treatment for any illness yet you have infered that I have done so.

 

If you believe your son is 'less Autistic' then you should read a bit more widely and work out that Autism is not a behavioural phenomenom so you cannot presume the condition itself has changed soley on behaviour alone.

 

My point was that those who promote the idea that Autism is biomedically treatable are in fact causing the very problems they are fighting and creating a very hostile enviroment for Autistics to try and thrive in. Autism and the co-morbid conditions that go with it(though there is no proof that they are exclusive or even common among Autistics) are divorced from each other. My level of functioning is limited when I am ill, as I am now, just as it is with any ill person. This does not mean in any way that Autism and the illness are linked.

 

You can't effectively respond to what I say when you didn't bother taking the time to even understand it to begin with.

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Lucas,

 

I cannot believe the amount of malice in your post.

 

Sincerely,

Natasa

 

 

As someone who is posting to this site for the first time I have to say that the only malice I can see in this thread is from the originator. Everyone else just seems to be posting their opinions, which I thought was what forums like this were for?

 

I think I will stick to my usual forum.

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Jill,

 

this is not our usual style - the originator of this topic came to the site only to promote this petition and responded very negatively to our discussion about it.

 

Sorry if we scared you off, if you take time to look around a bit more I think you'll find us a lot more welcoming than this thread would imply.

 

take care

 

Zemanski

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Is it safe to stick my head over the parapet and add my own opinion now? :huh:

 

I've always been of the belief that often our children can't express what is making them uncomfortable or causing them pain, remove the discomfort and the child will be happier and therefore (for want of a better phrase) act "less autistic" . My eldest was for the first 6 years of his life locked in his own little world with very little conection with the rest of us. We discovered at 6 that he had congenital cataracts that although they didn't blind him they were meaning that his eyes weren't reacting to light properly and he must have been very uncomfortable when in bright light. He had surgery to remove them and within 2 weeks he became verbal and is now at a mainstream school and florishing. He is still autistic, he always will be but the problem that caused him pain and stress was removed. Is it just possible that these children who do benefit from various diets do so because they are in pain from various gut problems and removing those problems through diet reduces the stress rather than curing the autism?

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I did sign the petition but afterwards reread it and wish i hadn't!

 

I read the part about offering parents in the uk the services and support to explore whether those issues

are affecting their child. I wanted to offer my support to anything that will help our kids BUT I don't agree with the "curing" autism part. I love my son and enjoy his company, yes it is difficult sometimes and our lives have become restricted, however this is who my son is and I wouldn't want to change him. Sorry if that sounds odd, I would like him to be able to overcome some anxiety and control issues but part of who he is, is how he sees and interprets the world.

 

I think the majority of people would support the services part, but don't perhaps agree that the food issue is the "cure".

 

I wish you all the best and perhaps you could pick out the positive from what people have replied and ignore the negative and perhaps if the petition was worded slighty different less people would react.

 

Just a thought ,

Please take care. >:D<<'>

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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.

 

They cause their own problems and degrade the quality of life for others by linking biomedically-treated conditions to Autism, which in turn allowed doctors in the first place to deny it can be effective as there are no treatments for Autism and it isn't appropriate either.

 

It seems though that sympathy is most given to those who can think of the most horrific things to say about Autistics.

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:clap: well said Reuby!! I signed it too and really wish i had taken the time to read more thoroughly.... :oops: I can't stand the 'Lets cure Autism' mentality. I too love my son dearly and he is who he is. He makes us laugh he makes us cry and i wouldn't swap it for the world!

Take care,

Kirstie.

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