natasha778

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

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

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

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

Hi all, please take a minute of your time to read and sign this petition if you agree with it. http://new.PetitionOnline.com/FundUs/petition.html p.s. it doesn't like AOL - cut and paste the URL into Internet Explorer if you have probs

Interesting that you point to flouride, I just had another look at the thread, where someone is describing its effects on thyroid/autism. I haven't had time to read the (long) post yet, but here is the link to the whole thread: http://www.autismweb.com/forum/viewtopic.p...420d7e0f9680de9

http://www.avn.org.au/Children's%20Gallery/angie.htm

Was just reminding my hb (nt) the other day, after reading the article, how I always used to tell him he was not very good at reading people's feelings and moods - he often misses subtle signs expressed through tone of voice, facial expressions etc. He has also always been 'funny' when travelling, just switches off completely and gets very uncommunicative, as if he needs to focus on something out there.... So yes, I very much agree with that article.

Bev, so sorry to hear that, the only consolation I can offer is: you are not the only one, I suppose we all have to deal with that type of problem. My side of the family is not too bad (at least so far, it is still early days), my father-in-law is pretty reasonable, but my mother-in-law is a real master of denial. The A word is a strict taboo, no matter how we try to explain she just says we are imagining things and that he will grow out of it soon, once he starts playing with other kids more - and of course she thinks it is my fault, as I don't take him to playgroups often enough. Her best ever was (re: my son not talking yet): "it is because you don't talk to him enough. If you just sit down next to him and say a word really sloooowly, and then repeat it a few times, I'm sure he'll start talking". I guess if I look on the bright side she does live a two hour flight away. huh. There was a great article in yesterday's Guardian, about a boy whose face got burn in house fire when he was a baby, and how the family are dealing with his facial disfigurement, ie with stares and bullying and misunderstanding. Before the boy started school the mother went to see the headmaster and explained the situation, and then wrote to all the parents in his class... http://www.guardian.co.uk/family/story/0,,1645665,00.html Maybe in some situations handing a book on autism or something like that would be of help... don't know, just hope there is something out there that would make some people think/listen.. .

Liz, that is exactly the point I was trying to make, thanks. Ops!

ops! sorry, still learning how to use this...

WOOOW, Sue, I think I got that, in which case I almost totally agree. Lucas, I do believe you when you say you want to help our children, it is just that you (from what I gather, correct me if I'm wrong) believe that the ONLY way to help is through understanding and acceptance. Which is fab, love and understanding and all, but I'm tired of hearing opinions that go along the lines of dismissing every (biomedical or behavioural) approach or theory as flawed, hurtful, unscientific or morally wrong, every doctor as quack, every parent as selfish, every treatment as 'snake-oil'. I'll risk sounding utopian and naive but will bring up the following question: is it possible that we (i.e. both sides in this argument) could one day meet somewhere in the middle and try and find a way from there? I just think that new approach (and agreement) is needed in order to maximise benefits (iiieee, so corporate-speak ) for both our children, parents and adult autistics. Agree?

Malika, (meant to include this in previous post, ops) are you familiar of research work by Dr Aristo Vodjani .... I better quote on his this: "Dr. Vojdani obtained his Ph.D. in the field of microbiology and clinical immunology with postdoctoral studies in tumor immunology. He is Director of Immunosciences Lab., Inc. in Beverly Hills, CA; Assistant Research Professor of Neurobiology, in the Department of Neurobiology at David Geffen School of Medicine at UCLA; member of editorial board of three scientific journals; and published more than 90 articles in scientific journals. His research interest currently is focused on neuroimmunology of autism and multiple sclerosis".... Lucas, I might be wrong on this one but I think both Temple Grandin and Theresa Binstock (both in Dr Rimland's 'camp', incidentally) are Autistics.

Malika, you might find the following of some interest: http://www.scdiet.org/6research/lupus.html

Hi, my advice would be to first get some tests done, like blood, urine... Comprehensive Stool Analysis is a very useful one (not sure whether it would be available through NHS though - if not they might have something similar). Anyway, this is to establish what exactly goes on, what nutrients he is lacking etc, as you might end up giving him something that his body does not need (probably would not do any harm, but you would be waisting your time and effort, as good quality supplements are not cheap), or you might give him something that does need but in different dosages etc. There are labs in this country that would do blood tests that establish level of fatty acids in blood (not sure what the tests are called exactly), ie whether he lacks omega-3 and how badly. Secondly, and this is actually CRUCIAL, is to find out what h digestion/absorbtion is like. Most autistic kids have some sort of damage to their intestines and there is malabsortion (for various reasons, usually bacterial dysbiosis, presence of fungus that damages intestinal wall etc) of nutrients. So even though he gets proper nutriets, supplements etc in his food, what he puts in his body does not get digested/absorbed and gets waisted - literally 'goes down the drain'. If there is malabsorbtion and other gastrointestinal issues the best way to try and address them is through Specific Carbohydrate Diet (see my postings on the subject for more information), combination of enzymes, colostrum etc. If you do go ahead with Omega-3, apparently the most effective are the ones where the ratio of EPA to DHA is about 80/20, so if you have say 400 EPA then you don't want more than about 80-100 DHA in them. You also want pharmaceutical grade Omega-3, with no oxigen (nitrogen is better). Optimum dosage is said to be 1gr (of EPA, as DHA is apparently not as important) dialy. Unfortunaly high quality supplements are guite pricey, another reason to establish whether whether he would be absorbing them at all. Good luck!

Theresa, you say That is exactly the point I'm trying to make: I do not think autism is part of anyone's make-up - there is possibly a genetic predisposition, or VULNERABILITY might be a better word for it. But then something from outside attacks the body, be it viral, fungal, bacterial, mercury, birth trauma ... or a combination of factors that then trigger the symptoms. As for the reasons for treatment (yes, a better word): my son is now already a much, much happier and healthier child than before the treatments began. I do believe he has been in pain for most of his early life (night-terrors, headbanging, gnawing etc etc, all now gone). In addition to that, he has been in constant FEAR and anxiousness about everything and anything etc etc. Reasons good enough to try and find a 'cure'. As you grow up you probably get 'used' to all the things going on in your body and they no longer cause such big problems, but it there was a pill to 'cure' autism I'd vote Yes.

�To cling to a purely genetic explanation of autism is a desperate attempt to maintain the illusion that one lives in a comfortable and rational world where new chemicals and technologies always mean progress, experts are always objective and thorough, corporations are honest and authorities can be trusted. That human actions, rather that genetics, might be responsible for compromising the health of a significant propertion of a whole generation is so painful as to be, for many unthinkable.� quote by Dr Martha Herbert

To go back to the Alzheimers / Autism link discussion, I now firmly believe it is the same thing, only in reverse. There is a great talk given by Dr Jerry Kartzinel, called 'THE ROLE OF NUTRIENTS IN AUTISM' (the whole presentation can be downloaded for free from www.danwebcast.com). In it the doctor, himself a father of an autistic child, mentions having an uncle who suffers (or better still, used to suffer) from Alzeimers and having him successfuly treated as if he was autistic, using DAN! biomedical approach. To those who hate the word CURE, please do not get me wrong, I also love my son exactly as he is, but ask yourself this: if you child had something like a broken bone in his/her leg that was sometimes causing pain and affecting movement, would you treat the child or attempt to cure? I just believe that our kids are genuinely sick, there is something going on in the body that is affecting the brain, and we owe it to them to ease the pain. The brain is just 'downstream'.

Hi, just to say I'm definitely all for biomedical approach, there is something going on in the body that influences brain/behaviour. We have just started Methyl B12 (still in trial period), results are already very promising. We are also doing it through Breakspear Hospital. I am also a recent convert/advocate of Specific Carbohydrate Diet - our son has been on it for about 6 weeks and showing DRASTIC IMPROVEMENTS. Do give it a try if you haven't already (read my postings on the subject for more info/links). To all those doubting Thomases I have only one thing to say: my son is making fantastic progress using biomedical approach. And that is all that matters. Also: THERE IS A CURE, I firmly believe it, the problem is the cure is not a single therapy, but a combination of procedures, all kids are different and have different underlying problems. The answer lies in finding the right combination of approaches and not giving up. I am aware that my son can one day reach a platform and not keep on improving, but if his autistic symptoms and behaviours stay at the same level that they are today, to me the road we have taken has been worth the effort. He is a different child that he was 6 months ago. He is now much, much more happy, cheerful, communicative (still non-verbal, but only two and a month old, but some words are slowly emerging) ? pointing, waving, saying by-by, responds to beign called, no longer aggressive, not kicking screaming and biting, no more digestive problems like severe diarrhea, malabsorbtion, non-digested food in stools etc. His tantrums are thing of the past, he is much calmer and much more focused, co-operation has improved, doesn?t freak out any more if we try to brush his teeth, cut his nails or all the similar things you are probably familiar with. If he wants something he points to it now, or brings it to me etc instead of endlesly kicking and screaming. He is more comfortable in toddler groups now, doesn?t run away if approached by other kids? And no one can tell me that biomedical approach does not work, I am witnessing it every day. Just a note on chelation/mercury: in my son?s case mercury does not seem to be one of the main problems. It. The lab results showed only a fraction of heavy metals that, in doctor?s words, most other kids on the spectrum show. In other words, every child is different, and treatments have to be tailored around every individual child. Georgiegirl, please let me know how you are getting on with Methyl B12

Just another quick note: it is much simpler (really!) and cheaper to bake your own breads, whether you do only gfcf version or go full grain-free. The shop products are usually overpriced and often full of additives, starches etc. There are lots of receipes on the internet - see my previous email for some starting websites. Another useful thing - you can hear some doctors and scientist, as well as creators of the diet speak at the DAN =Defeat Autism Now Conference that was held in April this year. The video clips are downloadable free of charge, you only need to register for a password at www.danwebcast.com One of the presentations is by Elaine Gottschall, co-creator of SCD - do have a look, I think this woman is a genius, the importance of her work will be recognised in the years to come.

Hi, I have found the following websites very, very helpful: http://www.autismndi.com/ - more general information on the diet, theory and sience behind it... www.gfcfdiet.com - this one is a must- it is a practical guide, has a list of foods, loads of receipes, tips etc.. Unfortunately both of the above are USA based, so list only their suppliers etc. Over here, Holland and Barrett and large Tesco stores have good supply of gluten-free versions. Smaller health-food shops are even better, as they stock things like millett and buckwheat flakes (great for breakfast) or buckwheat flour (pancakes). I have recently put my son on Specific Carbohydrate Diet (with FANTASTIC results so far - it is gluten free in itself, and I have not yet added any dairy product that are usually allowed on this diet, as it wasn't originally designed for autistic kids) and I am still locating best suppliers/prices - no grains are allowed on this diet, all the baked goods are made using ground nuts, so it is quite pricey to start with. But there are ways around it, I have just came accross a wholesale supplier who is willing to supply small quantities to private individuals (as a favour!) If anyone is interested I will pass on their contact. Good luck!

In my experience: it is all in the gut!!! at least for our son. He has been on gluten/casein/sugar free diet for about 6 months with very good results, but have recently introduced Specific Carbohydrate Diet with truly SPECTACULAR results - please read my full reply on this topic, posted today. Do give it a try, and NO CHEATING - this is very important! Good luck! There is a another great book out there (links to SCD) it is called "Gut and Psychology Syndrome": reveals the true connection between nutrition and brain function. Written by a neurologist and practising nutritionist it is a "no holds barred" investigation into the real facts behind why today's generation of children have the highest incidence of learning disabilities and behavioural disorders ever.... Dr. Natasha Campbell-McBride has done an excellent job of summarising the nutritional biochemical connections with psychiatric and neurological disorders and gastrointestinal function. She has done an admirable job in relating specific digestive disorders in conditions such as schizophrenia, autism, attention deficit disorder and other problems of child development. The book is full of valuable and interesting facts that can be used by people to optimise the health of themselves and their children.

In my experience the diets definitely help (it is all in the gut!!! at least for our son). He has been on gluten/casein/sugar free diet for about 6 months with very good results, but have recently introduced Specific Carbohydrate Diet with truly SPECTACULAR results - please read my full reply on this topic, posted today. Do give it a try, and NO CHEATING - this is very important! Good luck! There is a another great book out there (links to SCD) it is called "Gut and Psychology Syndrome": reveals the true connection between nutrition and brain function. Written by a neurologist and practising nutritionist it is a "no holds barred" investigation into the real facts behind why today's generation of children have the highest incidence of learning disabilities and behavioural disorders ever.... Dr. Natasha Campbell-McBride has done an excellent job of summarising the nutritional biochemical connections with psychiatric and neurological disorders and gastrointestinal function. She has done an admirable job in relating specific digestive disorders in conditions such as schizophrenia, autism, attention deficit disorder and other problems of child development. The book is full of valuable and interesting facts that can be used by people to optimise the health of themselves and their children.

Hi, There could be more than one reason our kids are overeating, but the main reason is this: the digestive system of most autistic/asperger kids is overridden with 'unfriendly' bacteria, yeast, parasites etc. Most of the food the kids eat does not get digested at all, it actually feeds bacteria and not the child. My son was an over-eater - at 18 months of age he was eating more than me or my husband (no kidding!) - all sorts of food without any discrimination, sweet, sour, fruit, meat, veg, everything. all the time!! and when we did the lab test they showed malabsorbtion, bad digestion, his system was over-ridden with bad bacteria and he was lacking good bacteria and digestive enzymes. HE WAS MALNURISHED!!! Whatever food he would eat and without beeing able to digest it it was left over as food for bacteria. In other words we found out we had been feeding the gut bacteria and not our son!!! This bacteria and yeast than damage the gut in all sort of ways (and release all sorts of toxins that get to the brain - one of the factors contributing to autistic behaviours!), the digestion gets even worse and there is even more food left over for the bad guys. The best way to break this vicious cycle is by implementing the Specific Carbohydrate Diet - please read my full reply to this issue, posted just today: My son has been on Specific Carbohydrate Diet for about 6 weeks now and the results are AMAZING!!! - too many too list here, would take a book format to go into detail, but he is a changed child already. Lets just say his digestion has improved (no more indigested food in his nappies), his diarrhea is a thing of the past, his attitude to food has changed (no more overeating, no more cravings...) and his behaviour/symptoms are a LOT better. Even if he reaches a plateau soon, in other words if he stays at this level of improvement, I would say that this diet has definitely been worth the effort (and it is hard work) and would recommend it to everyone. This diet is gluten free in itself - it was originally developed to help celiac patients - it does allow certain dairy products, but we have chosen not to include dairy, at least for a while, as our son has been GFCF for about 6 months and we know he does not tolerate casein well. As the gut is supposed to heal on SCDiet (and judging by external signs this is already happening in my son's case) we are planning to introduce the homemade goat yoghurt in the near future - goats milk has lot less casein than cows milk and lots of autistic kids supposedly tolerate it well. I would love to hear from anyone who has already tried this yoghurt. For anyone who might be interested in trying this diet, detailed information is available on its official website www.breakingtheviciouscycle.info and the original book is available through amazon.co.uk, it is called Breaking the Vicious Cycle: Intestinal Health Through Diet, by Elaine Gottschall. The latest edition of the book has a new chapter called "Autism Connection". The website has lots of links to similar websites, like pecanbread.com (run by and for parents of autistic kids), with lots of receipes ideas etc. My advice if you are still thinking of trying this diet is that you give yourself some time beforehand - spend a few weeks reading and researching Elaine's website and the book, locating suppliers, getting some kitchen equipment (like baking moulds, food processor etc) and definitely trying a few of the basic receipes before you introduce the diet 'for real'. This approach has saved me lots of stress. As I mentioned before, this diet is hard work in the beginnig, but it does get a lot easier. I would be glad to share my experience so far if you have more specific questions. Good Luck! P.S. you can hear the author speak on Defeat Autism Now conference of April this year - it can be downloaded for free from http://www.danwebcast.com/

Hi, just joined this group and noticed this discussion on SCD. My son has been on Specific Carbohydrate Diet for about 6 weeks now and the results are AMAZING!!! - too many too list here, would take a book format to go into detail, but he is a changed child already. Lets just say his digestion has improved (no more indigested food in his nappies), his diarrhea is a thing of the past, his attitude to food has changed (no more overeating, no more cravings...) and his behaviour/symptoms are a LOT better. Even if he reaches a plateau soon, in other words if he stays at this level of improvement, I would say that this diet has definitely been worth the effort (and it is hard work) and would recommend it to everyone. This diet is gluten free in itself - it was originally developed to help celiac patients - it does allow certain dairy products, but we have chosen not to include dairy, at least for a while, as our son has been GFCF for about 6 months and we know he does not tolerate casein well. As the gut is supposed to heal on SCDiet (and judging by external signs this is already happening in my son's case) we are planning to introduce the homemade goat yoghurt in the near future - goats milk has lot less casein than cows milk and lots of autistic kids supposedly tolerate it well. I would love to hear from anyone who has already tried this yoghurt. For anyone who might be interested in trying this diet, detailed information is available on its official website www.breakingtheviciouscycle.info and the original book is available through amazon.co.uk, it is called Breaking the Vicious Cycle: Intestinal Health Through Diet, by Elaine Gottschall. The latest edition of the book has a new chapter called "Autism Connection". The website has lots of links to similar websites, like pecanbread.com (run by and for parents of autistic kids), with lots of receipes ideas etc. My advice if you are still thinking of trying this diet is that you give yourself some time beforehand - spend a few weeks reading and researching Elaine's website and the book, locating suppliers, getting some kitchen equipment (like baking moulds, food processor etc) and definitely trying a few of the basic receipes before you introduce the diet 'for real'. This approach has saved me lots of stress. As I mentioned before, this diet is hard work in the beginnig, but it does get a lot easier. I would be glad to share my experience so far if you have more specific questions. Good Luck! P.S. you can hear the author speak on Defeat Autism Now conference of April this year - it can be downloaded for free from http://www.danwebcast.com/