Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 I joined this group becauseI am genuinely interested in all interventions for autism. This is how anti bio-med I am. In my book I clearly state “Parents would welcome agreed medical protocols to test for possible adverse reactions to gluten and casein, to measure yeast infections and check for levels of toxins. We would like to know if our child has a weakness in their immune system which counsels caution in relation to the normally benign vaccination programmes that are common in Europe and North America. We want to know if a metabolic disorder is aggravating our children's Autism by causing an imbalance in their levels of vitamins and trace elements. Should we be restricting access to certain foods or using dietary supplements to boost vitamin deficiencies? Research in all these areas continues. The results are not going to lead to a cure. But if questions like these can be answered when a child is presented for diagnosis relatively simple and inexpensive medical or therapeutic interventions may alleviate a lot of unnecessary suffering. If we can deal with their food intolerance or metabolic disorder or over sensitivity to environmental factors then the child with Autism is going to be more amenable to the educational interventions and therapies that are already available†I repeated this word for word when I gave a talk, entitled, “Educating the Health Professionals: the challenge for parents at the one day conference Autism: Challenging Issues; Continuing Ignorance, Thursday 14 June 2001 at Regent’s College London.) In my piece published in Communication that seems to have gained me a reputation as anti bio-med I wrote, “But let’s not dismiss the whole shebang as being about gullible parents who are ripped off by snake oil merchants. Some children do regress after an apparently normal early life. Autistic people do experience atypical responses to all sorts of environmental inputs, including medications. Autistic children do contract painful gut disorders. Some autistic people do benefit from restricted diets. The first thing we have to be clear about is that the child’s symptoms are real. Some parents have had their worries dismissed because it is assumed that autistic children will have poor sleep patterns, scream a lot and be difficult to feed anyway. It is experiences like this that explains some parental support for Wakefield and his theory of the MMR link to autism. If memory serves, Nick Hornby author and a father of a son with autism, stated that he had no axe to grind regarding MMR but the doctors at the Royal Free were the first to take his son’s gut disorder seriously and offer him treatment. The second point is that some of these symptoms may be connected to a child’s autism. But we do not know how. If you are non-verbal and you have constant earache, you will head-bang. That does not mean that your earache caused your autism. Nor does it mean that alleviating your distress will cure your autism. It means you are autistic and you have an earache. Anyone with an autism diagnosis should be given a full medical work up in case there are any other conditions that need treatment. Too often the diagnostic process stops when autism is identified. There are autistic children who have other conditions that may respond to safe, targeted biomedical interventions.â€(This is from the version on my computer. The Communication version was edited and may differ in some respects) In the follow up on my blog I wrote, “I do support biomedical interventions for clearly identified problems like sleep disorders, ear infections and problems with diet and bowel movements. But they must be targeted at specific symptoms and they ought to be tested. I do believe that these kinds of problems aggravate the difficulties faced by autistic people and their families and that they are often dismissed by medical practitioners who ought to know better. In my opinion dealing with these symptoms turns a sick autistic person into a healthy autistic person. It does not cure their autism. I do not believe that there is an epidemic of a new form of regressive autism caused by vaccines and curable by chelation. Chelation is a drastic intervention that carries great risks and is only justified by the severity of the risk posed by the heavy metal poisoning it seeks to cure. I do object to people who prey on parents and offer them false hopes at great price. In one sense we were lucky because our son was not diagnosed until he was 12. At three years old he had ear infections, sleep problems, tantrums and no speech. If we had been introduced to the biomedical movement then, we would have bought it all. Now he is 20 and applying for a degree course at college, done without the benefit of any biomedical intervention. Just because these interventions were not essential for my son does not mean that I condemn them out of hand. It does mean that I want research to provide evidence based treatments for all the problems associated with autism.†This is my oft stated public position. I am not anti bio-med. I am anti quackery. I will listen to solid science but I will also speak out against pseudo-science. Perhaps if people read my critique of Lathe, http://mikestanton.wordpress.com/2006/08/13/new-phase-autism/ they would understand why I wrote the review. If you read that and still think I am wrong, tell me why. Re: Fitzpatrick book Mike why on earth did you join this group? I know from your NAS Communication article that you are anti-biomed, what would you want with a support group like ours? I am very interested in your response Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Re: Fitzpatrick book Mike, Maybe this is the wine speaking (typing) but I'm not seeing where it is that you "support" parents who are on this group?? We're here because we think we can help our kids via medical means. You seem dead against this full stop. See my reply to . With me it is the lager speaking so I will leave the rest until tomorrow. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 In a message dated 09/09/2006 08:15:18 GMT Daylight Time, autistischen@... writes: This is my oft stated public position. I am not anti bio-med. I am anti quackery. >>>Define quackery for me please Mandi in Poole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 In a message dated 09/09/2006 08:15:18 GMT Daylight Time, autistischen@... writes: In one sense we were lucky because our son was not diagnosed until he was 12. >>>Why did he not get a Dx before age 12? Was it hard to spot or wern't you able to get a Dx? Mandi in Poole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 If your son were found to have high heavy metals what would you do? I'm not trying to be sarcastic. I'm just interested. My son is high in lead, and while chelation worries me, so does the lead toxicity. What would you advise? RE: Re: Fitzpatrick book Autism Treatment wrote:> In a message dated 09/09/2006 08:15:18 GMT Daylight Time,> autistischen (DOT) co.uk writes:> > In one sense we were lucky because our son was not diagnosed until> he was 12. > >>>> Why did he not get a Dx before age 12? Was it hard to> spot or wern't you able to get a Dx?> > Mandi in Poole> > A bit of both. had a statement from the age of 3 because of languageimpairment. With hindsight if you take all the different reports togetherthey shout autism. But this was in the 1980s before the criteria werechanged. Autism meant Kanners and nothing else. So was "a child ofaverage ability with severe difficulties using and understanding spokenlanguage" when he was three. This changed to "severe emotional andbehavioural difficulties with moderate language difficulties" when he wasten. He made rapid progress in language after he had his adenoids removed whichgot rid of the constant ear infections. He also had a lot of speech therapyand an inspirational specialist language teacher. Then around 10 he wasunable to fathom the changing social rules as his peer group approachedpuberty. His rapidly deteriorating behaviour was actually an autisticresponse to unexpected change and increasing social demands. When autism was first mentioned I dismissed the idea. I work in a schoolfor severe learning difficulties which has a lot of autistic pupils.Compared to them my son was not autistic. Then I spent 3 days in a TEACCHseminar with Mesibov and finally recognized the truth. My son'spsychiatrist did not feel qualified to diagnose and he was eventually dx'dby Judith Gould. Even with a dx secondary school was a disaster. He has donefantastically well since leaving school. -- Mike StantonLet's make autism a happy place :-)http://mikestanton.wordpress.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 That's exactly my point you had no way of knowing and you were lucky in so much as he was going to improve and had no need of biomed, I had this with my oldest son. We had hoped the same would be true of my youngest but the delay in starting biomed only had him in pain for longer, and he is and always has been in SLD one of the children you previously said would make your son appear not to be autistic, so some times waiting for improvements to occur spontaneously is nothing more than wishful thinking. There is a huge fallacy among certain groups that only a tiny percentage of severe children remain severe as adults and also huge exaggeration on how severe they were in the first place, I would have said my oldest was obviously autistic and about as bad as it gets until I had my youngest, and to this day have yet to see another child represented in the media who is/was as severe as my son. We all walk our own path and no one can tell another how it is going to pan out for their child purely on the basis of their own experience. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 Autism Treatment wrote: > In a message dated 09/09/2006 08:15:18 GMT Daylight Time, > autistischen@... writes: > > This is my oft stated public position. I am not anti bio-med. I am > anti quackery. > >>>> Define quackery for me please > > Mandi in Poole I am content to go with this one from Wikipedia <<< Quackery is a term used to describe the unethical practice of promising health-related benefits for which there is little or no basis. Quack is a term used for a person who dispenses false medical advice or treatment. " Health fraud " is often used as a synonym for quackery, but this use can be problematic, since quackery can exist without fraud, a word which always implies deliberate deception. [1] The word quack derives from quacksalver, an archaic word originally of Dutch origin (spelled kwakzalver in contemporary Dutch), meaning " boaster who applies a salve. " <<< The real question is how can you tell if there is 'little or no basis for a treatment?' The original Dutch reference to boasting gives me a clue. Quacks usually inflate their own importance. They claim to have discovered some unique cure or therapy. They pretend to be more qualified than they are. Often their qualifications have nothing to do with the medicine they are practising. They prefer conditions that require lengthy and expensive treatment regimes, especially if conventional medicine cannot guarantee a cure; things like autism, cancer, heart disease. If there is no improvement and you give up you do not get a refund. Sometimes they get carried away and imagine they can cure almost anything. They attract devoted acolytes who provide glowing testimonials for their nostrums as well as fierce critics who feel they have been ripped off. For the most part quack remedies are harmless and may even " work " via the placebo effect. Some are dangerous. But the biggest danger is that people will use the quack remedies as a replacement for conventional medicines that were doing them good. If you want an example of quackery I believe that Rashid Buttar ticks all the boxes. His extensive CV http://www.hyperbaricmedicalassociation.org/docs/IHMA_BIO/Buttar.pdf makes no mention of any specialist training in cardiology, toxicology, oncology or gerontology but he still offers treatment advice for heart disease, heavy metal poisoning, cancer and for aging. He is of course equally well qualified to treat autism. http://www.drbuttar.com/ His 9 Steps to Optimum Health DVD claims that " By following the steps on this video while under the supervision of a physician, patients have experienced up to 80% improvement in all their complaints, regardless of their underlying medical condition. " If anyone is following Buttar's protocol may I say that it is no part of my purpose to engage individual parents in debate about their child's treatment. I am not qualified to do so and it would go against the purpose of this group. -- Mike Stanton Let's make autism a happy place :-) http://mikestanton.wordpress.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 Autism Treatment wrote: > I think where you were lucky is that your son was never going > to be so severe in the first place, and not because you were saved > the expense of biomed. My 11 yr old is HFA he moved up the spectrum > with no interventions at all, however his brother now 9yrs old is > never going to morph into higher functioning without the > interventions that have taken him out of pain and to a point where he > is able to learn. Vicky > We had no way of knowing when was three how he would turn out. If we had done biomed then, most likely we would have credited his improvement to that when it turned out to be unecessary. Note that I said we were lucky in that sense only. Actually we had a horrendous time, none more than my son who will probably be on medication for the rest of his life as a result of the psychological effects of systematic bullying and the lack of understanding and support at school. -- Mike Stanton Let's make autism a happy place :-) http://mikestanton.wordpress.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 Autism Treatment wrote: > If your son were found to have high heavy metals what would > you do? I'm not trying to be sarcastic. I'm just interested. > My son is high in lead, and while chelation worries me, so > does the lead toxicity. What would you advise? > I would go to my GP and ask for my child to be tested. If the results were positive I would expect to follow the medical advice given. I would also look for the source of contamination. I think that lead poisoning is mostly caused by contact with lead contaminated materials. Soil, water and paint are the most common. Lead poisoning is a big problem in the USA. Perhaps the information on this site may help you. http://www.nlm.nih.gov/medlineplus/leadpoisoning.html There is nothing on NHS Direct. -- Mike Stanton Let's make autism a happy place :-) http://mikestanton.wordpress.com Quote Link to comment Share on other sites More sharing options...
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