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16.10.2009 08:19:01 / carrie
Nikulas and I will be speaking on wednesday, October 21st at Iceland´s autism society (hjá umsjónarfelagi Einhverfra). The address is Háaleitisbraut 13, 4th floor. The time of the meeting is from 8PM- 10PM. I plan on introducing my book and talking a bit about why I wrote it and various therapies that have helped my children. Then Nikulas plans on speaking shortly about how he experienced autism. A nutritional therapist is also going to speak about what is important to know when changing one´s child´s diet. Then there will be time for questions and discussion. Nikulas and I are looking forward to the evening.
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04.06.2009 13:29:09 / carrie
My book was published this spring. Since then, lots of people have been asking me about diet and autism. So many parents have shared with me that their children also have digestive problems. I am hoping next fall to help start a support group up at Iceland's autism society (umsjónarfélag einhverfa) for parents interested in experimenting with diet. It would be good to have other parents to talk to about recipes and where one can most reasonably buy certain foods. Also I want to look into the possibility of ordering multi-vitamins in bulk at a reduced price. That may be a possibility, if there is enough interest. I definitely want to look into it. Another thing that happened after my book was published was Olgeir and I were featured on an Icelandic television program, Ísland i Dag. We told our boys stories and again got a wonderful response. Nikulas did not want to go on television. He was afraid of being teased at school. I worried about it too. However I didn't need to worry. All went fine. There were some students that did recognize me and Olgeir. Only pictures of Nikulas were shown when he was very young. However, even though Nikulas was recognized by some, he was not teased. The kids that recognized Nikulas told him that he should have gone on TV. It sounds like they thought it was a pretty cool thing. This has given Nikulas more pride in himself. In the past he has felt ashamed of his illness. However I see that this is starting to change thanks to all the positive publicity we have been given. The fact is that Nikulas is a talented kid and such a wonderful source of knowledge for those of us who want to know what it is like to be autistic. He can tell us how his ears used to hurt ringing with strange high pitched sounds as a young child. He says that his memories of early childhood are very visual and stronger than his memories from a couple days ago. He tells that being autistic meant being very visual for him and he can describe all sorts of things from the old house of his grandparents and great grandparents that my older son has no memory of. For example the roof leaked in his grandparents house. Nikulas can describe this. We didn't know at that time that our son had memories or thoughts of the nature he describes today. He couldn't talk at that time and we didn't know anything about what he was feeling or thinking. We know today that Nikulas was there with us and that he was a very stressed little boy with lots of discomfort in his nervous system due to autism. When various allergens were removed from his diet, Nikulas began to emerge and is now able to tell us about himself and who he is and was. Nikulas has now agreed to come with me next fall and speak to parents. I am hoping to speak with Nikulas with me next fall up at the autism society and talk about what it was like to have full blown autism. I am so proud of him and I think he is even starting to feel proud of himself. It is so important to get the message out that these kids are not empty bodies. It is often discovered that many people on the specturm are very aware of their environment and need to be helped in learning to communicate as shown in the movie "The Sunshine Boy". I see how my 2 boys have suffered during the time we just didn't know how to help them. Times are changing here in Iceland. We are succeeding in finding ways to help our kids, and I am truly optimistic about the future for my boys and others on the spectrum here in this country.
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19.10.2008 10:42:33 / carrie
After my experience of having 2 children on the autism spectrum, I have learned that diet can make a huge difference in their life quality. Therefore I am always looking for ways to improve our family's diet. The latest dietary changes at our house is fruit shakes for breakfast. We are finally getting our fruit! I have to admit that I am horrible about eating fruit. So this is an important change for me as well as my children. I now find a big strawberry shake to be really refreshing treat for breakfast almost everyday. Plus the energy boost it gives is not bad either. I hide in our shakes things like healthy oils that don't taste very good, but are really important for our health. (The omega oils are much talked about at the Defeat Autism Now conferences as helpful to many kids on the spectrum).It is also possible to add a tsp. or 2 of L-glutamine powder for leaky guts if that is an issue. Here is the basic recipe I use.
Put in the blender the following:
- 1 banana for each person - 3 or 4 hands full of various kinds of frozen berries (Strawberries, raspberries, wild Icelandic blueberries are good for example. Be creative! ) -1 Tbsp. Omega 3 oil -1Tbsp linseed oil 1 tsp vanilla -1 freshly squeezed grapefruit (Grapefruit is really good for kids that have been on a lot of antibiotics and have fungal issues!) Other types of juice are good too. Just be sure there is no added sugar etc.. -1 Tbsp Xylosweet or agave syrup ( This is optional! It just depends on how sweet you want your shake to be.) Rice milk ( It varies how much you need depending on how thick you want the shake to be and how many people you are making this for).
Other options to add: L-glutamine, or other supplements your child takes.
Another tip: Freeze these healthy fruity shakes into popsicle forms.
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27.08.2008 15:57:34 / carrie
The summer of 2008 was a busy one at our house. Arthur started out the summer with competing in his first swim meet. He has been training with Afterelding 2 days a week this past year. He no longer needs any extra assistance in sports or gym in school! Behavior problems no longer exist regarding Arthur. We soon saw after he started school at the age of 6 that Arthur's major problems were in the area of language difficulties. He is now receiving individual tutoring in school in various subjects plus he receives assistance in class when needed to help him understand directions and lessons, etc . Other than that, he needs no extra assistance. He plays and participates socially on his own on the playground and does fine on his own in daycare (frístundaheimili) after school. He has friends his own age at school that seem to understand Arthur. They play with him, and they also help him out when needed. His classmates are so good to him! Arthur has become more socially adept than I would have once believed possible. Olgeir and I are so proud of him! 
Nikulas is also doing really well! He will soon turn 15 yrs. old and is almost as tall as his father. This past summer he needed a job. He was unfortunately unable to do yard work jobs due to his allergies. So the yard-work in which the city of Mosfellsbær offers to the local teens was absolutely out of the question. Therefore we had to find something else. So we offered Nikulas a job working with his father (Olgeir) and grandfather (Dudí) building our family a new home in Leirvogstunga. So Nikulas has learned to swing a hammer. His allergies were not real bad which was amazing considering the wonderful weather. You may remember from my book, "Baráttan fyrir börnin" that Nikulas's allergies were once nearly uncontrollable and he had difficulties just being outside for short periods of time. In those days he would loose all his eye lashes when ever the weather warmed up, and that was despite being on medication and eye drops. Today that is under better controll. Nikulas still takes allergy meds. However, he hasn't needed any eye drops this summer. Plus he takes vitamins produced by (Kirkman's and New Beginnings) These 2 companies specialize in making vitamins for compromised immune systems as often found in autism. We have also found that Nikulas needs to avoid certain foods. He is allergic to nuts and oats. Plus a year ago we discovered that corn goes very badly in his system! It gives Nikulas diarrhea if consumed in large amounts. Nikulas's grades also improved after we removed corn from his diet. He was just barely passing in school, but after removing corn his grades shot up to being around 7.0. Personally I believe it is likely that his nervous system began working better and that corn was likely a cause for inflammation. So we need to not only watch out for corn in its normal form but we also need to look at sweeteners to make sure there is no corn-syrup in anything Nikulas eats. My boys are both on special diets but they are not quite the same. Arthur originally wa on a casein-free, gluten-free diet. That was absolutely necessary to start with. He at the time had chronic diarrhea. My other son, Nikulas needs to avoid corn, milk, nuts and oats. Gluten free products often don't work for Nikulas because corn is found in lots of gluten free products. However, I have found that gluten-free products usually work really well in Arthur, but there are exceptions. Arthur seems to have problems with digesting the heavier breads. Heavy gluten-free products like quinoa, as one example, tend to give Arthur gas and loose bowel movements. I have recently experimented with Arthur and what happens when we cheat on his diet. What I found was interesting. If I give him the heavy spelt bread that Nikulas eats, he gets diarrhea soon afterwards. Fine spelt seems to go really well in Arthur. If I give Arthur a hamburger bun ,which is not healthy food for anyone, his digestive system seems to tolerate this better than the coarse types of spelt. If Arthur gets this type of junk food such as a hamburger bun with normal white flour several days in a row, his poop will turn sort of a stinky green and rather soft and his attention span goes way down. Sorry about the disgusting poop descriptions, but I just want to be sure I am understood. I am guessing Arthur just doesn't have the right digestive enzymes to digest heavy forms of roughage like coarse-spelt and quinoa. So now, I know what he can tolerate which is good to know. I know Arthur can cheat on his diet and I know how much cheating he can tolerate
(I would definitely recommend to other parents of children with autism to study their child's diet. Make journals to record anything unusual. Make note of both good and bad behavior, diarrhea, constipation, etc. and see if you can make any connections to diet. Sugar, food- coloring, flour, milk products, carbohydrates are all items that have been identified in some children with autism as problematic.)
-1 helpful hint for autism and diet---
For those of you who can read Danish:
This past summer I bought 2 wonderful recipe books from Denmark in which Thorbjörg Hafsteinsdottir wrote together with an autism mom named Ninka Bernadette Mauritson. Her son with autism dramatically changed after addressing his diet issues. The food ideas and recipes they give up in these books are really good and very detailed. My kids love the recipes for shakes and smoothies! I ordered these books on line at www.politikensforlag.dk Kernesund familie Kernesund Mad After ordering these 2 books this past summer we did a lot of experimenting with various new recipes which was fun! More summer projects Another area we worked on this summer was learning various things. I used ABA (atferlis þjálfun) to teach Arthur the multiplication tables and a few other things. Arthur worked for coins and towards the end of the summer he had enough money to buy himself beads. He now keeps me busy ironing the things he makes out of his beads. Arthur loved learning this way. He was really motivated to learn and earn money. So he is going back to school this fall knowing a little more math. We also worked on writing and I drilled him on our phone numbers, emergency phone numbers and our present and future home address. We also did a lot of reading. So Arthur was kept busy.
When he was up at the lot in Leirvogstunga he spent a lot of time playing in the dirt and riding bike with his little sister who is also a good friend to him these days. They had tea parties together using rocks as plates and cups while sitting on pieces of wood that represented the table. Arthur has learned a lot socially from his younger sister. This is a picture of Arthur and Margret from this past summer: 
They have also started to argue and compete for attention like normal siblings do. If I give Margret a hug, Arthur also insists on getting a hug. Arthur is starting to show a more normal level of affection towards people and often comes to us spontaneously and gives us a hug and kiss. He often asks me, "How are you?" or "What are you doing?" or "Whats for dinner?" He sometimes even greets people when we go visiting friends or relatives. I didn't say always, but it has happened on more than one occasion. He also cries when he is upset and comes to us to be comforted usually telling us what his sister did to get him so upset. I know this sounds tiring, but it is normal behavior. Therefore we are happy about our son arguing, crying and telling on his sister. It is true progress in his social development. The Chelation Progress We did some chelation using Detoxamin in the beginning of the summer, but the level of metals in Arthur's urine has decreased a lot. So I am thinking we will not be doing anymore chelation on Arthur for a year or so, if not longer. We will see how his development continues. Maybe we won't need to do anymore chelation? I would like to try some oral DMSA chelation with Nikulas someday, but I need to get to the USA or Germany to buy it for him, and with the cost of building a new home travel is not something I can afford at the moment. So that remains on my to do lists for the future. It would be interesting to see how Nikulas would respond to oral chelation. They say that older kids often respond less. Nikulas refused to do Detoxamin because it is in suppository form. I described our experience with Detoxamin in the section on chelation. I believe it was very helpful for Arthur to say the least.
Well it was a super good summer! Arthur has now gone back to school and is now in the third grade (8yrs old). He has a new teacher and she says he is doing really fine. He does everything the other kids do and we were told he seems really happy in school. So everyone is happy! Thats what my goal is for my boys. I want them to be happy! The picture below is taken on Arthur's first day back to school. Nikulas doesn't want his picture shown on this blog!
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14.08.2008 11:15:21 / carrie
Now I have written a lot about biomedical interventions used for autism. This is all really interesting and I have a tendency to talk a lot about those types of interventions for autism. However, it is important to remember that many of the biomedical interventions have not been accepted by the traditional medical establishment. I ended up resorting to this type of intervention when Arthur was 5 years old. At that time he had suffered from diarrhea his whole life. Putting my son on a special diet was simply a desperate attempt to stop his 5 year case of diarrhea. I explain how we ended up so desperate in my book. The traditional medical establishment out right failed in helping my son's physical condition. That's why I ended up taking matters into my own hands with miraculous results.
In the beginning of Arthur's diagnosis, we did things by the book so to speak and our chosen form for treatment was Applied Behavioral Analysis. I can't say enough praise for this form of treatment. Research has repeatedly shown that nearly half of the children treated with Applied Behavioral Analysis will enter elementary school with little or no need for extra assistance. That is amazing! These statistics have also accepted by the traditional establishment. However, children need to receive between 35 to 40 hours each week of Behavioral Analysis to have this possibility and this needs to occur during the preschool years to get the best results. I give up information about this research in my book, "Baráttan fyrir Börnin" . I definitely would encourage parents to look into this treatment form. It is available here in Iceland. In Icelandic it is called atferlis þjálfun. Some even claim that children actually recover from autism through the help of Applied Behavioral Analysis. This is a controversial statement to say that a child can recover from autism. I personally believe that some children can recover, and many can improve greatly with treatment. The well known actress, Jenny McCarthy, also calls herself an autism-mom. She described recovery from autism while being interviewed on the Larry King Live show, by comparing autism to being run over by a bus. After such an incident a person is likely to have some scars but still can recover. It just varies how much of a recovery can be achieved between individuals, and one will never know what could have been had this not happened. The fact is that more and more children are doing the impossible and loosing their autism diagnosis. So it is hard to say what is a complete recovery because as I said one can't know what could have been. But if you are the kind of parent that wants to still shoot for the stars so to speak, then Applied Behavioral Analysis may be just what you are looking for. This treatment method is based on the fact that all living creatures behave in a way that is rewarding. Applied Behavioral Analysis uses this fact to change the behavior of individuals with autism by rewarding positive behavior and ignoring undesirable behavior. The therapy is set up uniquely for each individual because nobody is the same. One has to find out what each individual child likes in order to reward them and teach them new behavior and learning skills. The results are often no less than a miracle and the research shows repeatly that applied behavioral analysis works. I encourage you to check it out!
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11.08.2008 10:33:29 / carrie
Recently I got in touch with my cousin (Nick), who happens to be a biomedical researcher at the University of North Dakota. I was so surprised to hear that he has recently been researching how selenium levels affect mercury poisoning. I found this really interesting and it may explain why some people seem to be uneffected by mercury, while others become extremely ill. You see this research shows that selenium protects the body and brain from the harm of mercury. So when people are eating fish that is high in selenium, as most types of ocean fish are, they are benefiting from this. The selenium actually protects us from mercury poisoning. However if one is eating fish such as shark, sword fish or whale which do do not contain the high levels of selenium the effects may be very different. I found this thought very interesting and reassuring to hear because no one wants to have to stop eating fish. After all research also shows the importance of sea food and especially the omega oils on our day to day health. You can read more about the research on selenium levels and mercury poisoning at... http://www.seychelles.net/smdj/SECIIIC.pdf However things may not be so simple. Some of us may not absorb selenium as well as others. My two sons have both had digestive problems and I wouldn't be surprised if their selenium levels were low as young children. Could it be that low levels of selenium leave a minority of people open to heavy metal poisoning and problems of the immune system? This may also explain autism in Iceland to some degree. I, as you have read, have so wondered if heavy metal poisoning from fish could be in issue in the high rate of autism in Iceland. Recently it was in the news that the waters around Iceland do not have a high level of heavy metals. Thats great news!!!!!!! However, if the info about selenium is correct maybe even low levels of mercury could be dangerous to some people if they don't absorb selenium properly????? It would be interesting if someone would measure heavy metal toxicity in our kids here in Iceland and find out if heavy metals are an issue regarding autism in Iceland. The autism rates in Iceland have skyrocketed the last 20 years and I really think it is about time that we look at our own kids and consider the possibility of the heavy metal issue. I personally think it is about time we look in to this because there are treatments for heavy metal poisoning as I have told you all about. Chelation!!!!!!
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25.06.2008 15:26:59 / carrie
Chelation
In my book, Baratta Fyrir Börnin I describe diets and vitamin treatments I have tried and continue to use with my family, but we have progressed since then and have added detoxification to the list of things we have tried. What I am doing is I am treating my children for environmental illness. In 2007 I began chelating Arthur and myself. Nikulas refused to take the suppositories I bought in the USA which contain the amino acid CaEDTA ( Detoxamin) and are sold over the counter in the USA. Other countries also sell supplements that are used for chelation such as Detoxamin and DMSA. In the USA, Germany and the United Kingdom, these supplements are available with out a doctor’s prescription. Arthur and I have shown some dramatic changes in which seem to be due to chelation therapy. I decided first to take the medication to experience for myself the effects and possible side effects before giving them to my children. I personally experienced no unpleasant side effects. The first step before beginning chelation is to remove all amalgam fillings from one’s teeth. Otherwise mercury can be spread around the body and actually worsen one’s condition. I also strongly recommend finding a doctor to advise you about chelating and one also should have a doctor involved to follow up on one’s health through blood tests. I, to my utter amazement, found that my problems with achy joints all but completely disappeared after a couple months on Detoxamin. I used to have discomfort in my joints if the wind blew and it became really cold. My hips, knees and sometimes my fingers would ache. This started in my early 20s. So I have had this discomfort for years and thought I just had to live with it. Some doctors that specialize in environmental medicine say that in some cases this happens because of toxins such as heavy metals cause inflammation in the body in general. Removing the metals in some cases like mine reduces inflammation . I also felt like I was more relaxed. Many parents of children with autism report lots of anxiety in both themselves and their children. Some speculate that heavy metal toxicity may contribute to anxiety problems. I used to tell myself that my difficulties with anxiety were due to the stress of having 2 handicapped children, but I am not so sure anymore. I am starting to think that heavy metal poisoning was a big problem for me. I believe that my family has a genetic predisposition to detoxification problems. Therefore chelation was likely very helpful in my situation. Many report improvement in children with autism that under go chelation. I read on the net that 1 of 12 children with autism in the USA have under gone some form of chelation. http://clinicaltrials.gov/ct2/show/record/NCT00376194 The theory is when the heavy metals are removed the inflammation in the nervous system reduces and improves or restores function to the nervous system and brain. The Autistic Research Institute from San Diego reports that 73% of parents surveyed reported improvements of their children after chelation therapy. 77% of parents surveyed with children with Aspergers reported improvements. This is not a double blind study, but it may be a strong clue for us to pay attention to. When we first started to chelate Arthur, he was excreting very high levels of heavy metals which was measured in his urine, and we saw extreme changes in him for those first months. His level of speech increased. His record for sentence length was 8 words, and after one month of chelation we heard his first 12 word-sentence. He also began to play more socially with his sister. He all of a sudden played house with his sister that summer. My daughter was the mommy and Arthur played pretending to be “Pabbi”. When he started school come fall they reported to me that he was participating more in music sessions, he now understood games in physical education class like soccer, "Komdu litlar fiskar" a type of tag etc. Arthur also has started swimming with our local team, Afterelding, and has no extra assistance. I drop him off to go swim and he dresses and undresses himself in the mens locker room and swims just like everyone elses kid does. He needs no extra assistance. I am so happy! I personally can’t prove that chelation is the reason for his quick progressions in development, but I do expect that it may very well be why. So many other American parents are reporting similar experiences with chelation. However, it doesn’t help everyone. They say that not all autistic children have heavy metal issues. Some children are said to have serious issues with viruses that also cause swelling of the nervous system etc. However, some researchers say this is all a bunch of bull-shit and none of it works and parents like me are basically desperate. So these issues are still being argued in the world of science. I decided I didn’t have time to wait for science to lead the way. American doctors that are doing chelation on children with autism say that children under the age of 6 respond best. Arthur is now 8. So he isn’t an ideal candidate, but I had to give it a try before he got even older. Age works against us when considering heavy metal-detox. So I researched this all on my own and found medical help in the USA to tell me how and I also have had medical help in Iceland to follow up on our health and chelate safely. I have used suppositories and oral chelation. I also use various herbs and vitamins while chelating. I have not done IV chelation and I personally think it is too risky with out an experienced doctor involved and therefore not my style. I have only done oral DMSA and Detoxamin suppositories. We took a break from chelation for some time last autumn and then began again during the winter. Last winter we were chelating using oral DMSA every other weekend. The results were not as dramatic as when we first started this process. Arthur still excreted metal in his urine, but not in such high levels as was to start with. However Arthur continues to show progress in smaller steps. We are starting to hear somewhat social conversations from Arthur. He has recently started asking me questions about all sorts of things and every once in awhile shares his thoughts. I have gone back to school. Would you believe Arthur asked me what grade I am in? Small improvements keep coming. Therefore we continue in this chelation process. Honestly, I don’t dare stop yet because the heavy metal keeps coming and I keep thinking we need to do this just incase it is helping. The other day I told Arthur we were going to build a new and bigger house. He told me that he wants a blue bedroom and that he wants pets for our new house: a dog, a cat, a pig, a sheep and a cow. The cow he wants to keep in his brother Nikulas´s room. Then he laughed! Don’t get me wrong. Arthur is not completely recovered. Comments like this are not as commonplace with Arthur as compared to healthy children, but we are thankful for every little comment that comes from Arthur. I am finally getting to know my youngest son. He is a funny character! Also Arthur’s speech is far from always correct. He has problems with pronunciation of certain sounds and his sentence structure isn’t perfect, but we are just happy he talks and that he sometimes shares his thoughts with us! It would be interesting to know where he would stand on the autism spectrum today. In 2006 they discussed changing his diagnosis from atypical autism to full blown autism, but decided it was unnecessary because it didn’t matter for the amount of assistance he would receive. In 2006 specialists at Iceland’s Diagnostic and Counseling Center (greiningastöð) recommended a special school for my son. They didn't think it was a good idea to mainstream him and claimed he was a much more handicapped individual than his brother, Nikulas. Now today he would never be diagnosed with full blown autism. He attends normal school and is doing fine. My mother in law works up at school and says there are lots of children that are more difficult to be mainstreaming than my son. He has improved a lot since 2006. I don’t know what they would call his disorder today if they would diagnose him again. All I can say is he is very socially high functioning much like his brother Nikulas but still has lots of language issues. Arthur is a nice person to have around. Just ask anyone up in Varmá Skóli! If you are interested in learning more about chelation I would recommend reading about detoxamin on the net at: http://www.detoxamin.com/autism.html?k=autism&se=autismcampaign&p=1.00&gclid=CKiGnu-G6pUCFQyD1QodgVBreQ An interesting video about this controversial therapy can be viewed at: http://www.youtube.com/watch?v=4eyJb-izu6M&feature=related I have purchased oral DMSA and detoxamin through a company called New Beginnings Nutritionals. New Beginnings products are also available in Germany. www.nbnus.com They are really helpful, and I would not hesitate to e-mail them if you have any questions about chelation products such as DMSA or detoxamin. They also sell lots of vitamins and specialize in autism. So they are good people to contact when you have a question. Infrared SaunaTreatments: Another treatment that doctors that work in environmental medicine sometimes recommend for detoxification problems is infra-red sauna treatments. We got to try an infra-red sauna at the Defeat Autism Now conference in 2006. What a relaxing treat! We have since purchased a sauna through an Icelandic company that was actually even in stock. I recommend it for relaxing and it is said to be very healthy for individuals with detoxification difficulties and environmental illness as believed to be the case in autism. The infra-red rays are supposed to increase detoxification through perspiring deeper and better than other types of saunas. Also this type of sauna is not as physically stressful to be in because it is a dry sauna and needs less heat. At any rate we really enjoy it. It seems to help with acne and oily skin problems of myself and my teenagers and I do imagine that using our sauna is really healthy for our family’s detoxification issues.
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25.06.2008 15:11:40 / carrie
I don’t claim to be an expert, but as an autism-mom, I have done a lot of reading these past years about various theories that may cause autism. Genetics and environment are the issues being argued as the causes of autism. I have so wondered if autism is truly increasing in prevalence. If so, then what could be causing this in Iceland. I just couldn’t see the environmental issues that were so severe in this country. Why is our autism rate so similar to that of the Americans? We don’t vaccinate in the same way the Americans do. Thiomersal has been removed from young children’s vaccines. One bit of interesting research that perhaps is a clue for us comes from the United Kingdom. There it has been reported that autism is more common in the countryside than in the city. Researcher, Paul Shattock from the University of Sunderland speculates that this may be due to the use of organophosphates insecticides in British farming areas. http://osiris.sunderland.ac.uk/autism/bobbudd.htm Well people in Iceland don’t use lots of insecticides. We hardly have any bugs in our cold climate to poison. Here in Iceland we heat a large percentage of our homes with hot spring water. It would be logical to think that Iceland was a very unpolluted nation. That’s what I thought until I discussed autism with an autism researcher. It profoundly changed the way I think.
At the DAN conference in Washington DC in 2007 I had a discussion with autism researcher, Theresa Binstock over lunch. I asked her why if autism is an environmental illness would the level of prevalence be so high in Iceland. I pointed out to her that thiomersal had been removed from vaccines and that we vaccinate much less. I thought it really must be a huge mystery or just a mistake and that genetics were more at fault. She patiently explained to me that Iceland was not as free of pollution as I believed it was. She explained to me that mercury and PCBs don’t sit still after being released out into the environment. These substances move towards the cold up into the Northern regions of the earth. She told me that there was a book I should read about this issue called Silent Snow by Marla Cone. When I got home I ordered this book through Amazon, and I was so surprised to read all sorts of research that has been done in our area of the world (Greenland, Norway, Faroe Islands, Denmark, Northern Canada, etc.). Marla Cone presented many studies that measured levels of PCBs and mercury. There were breast milk studies comparing the breast milk of women in various nations. We women of the North didn’t have the best results when examining our breast milk. Marla Cone told about studies measuring pollution in the fat of the polar bears from both Greenland and Svalbard Norway. She talked about various types of fish of the Northern hemispheres. It wasn’t comforting to hear that they have been finding many toxic substances in the fat of polar bears, such as chemicals that are used in other parts of the world as weed killers and even chemicals such as DDT which is now only used in third world countries like Africa to fight malaria. They are also finding things like flame retardants and mercury in the fat of habitants of the Earth’s northern hemispheres. Cone described an instance where birds contaminated a lake in a very isolated area in Norway. The bird droppings that made the moss in the surrounding mountains leaked into the lake. That was where the mercury came from that eventually contaminated the lake and made the fish unsafe to eat. I have much wondered about Iceland's beautiful national park, Þingvellir, after reading about the mercury problem in the fish there. Could that be a similar situation? What about us humans then? Can these substances cause autism? Those are some of the questions I and many others are asking. After all mercury is said to be toxic to the nervous system and believed to effect the cognitive development of children. Who is putting mercury into our environment? According to Marla Cone, Asia is the biggest polluter when we are looking at mercury as air pollution. They release more than 50% of all mercury air pollution into the air. In Texas they have recently published a study on the level of mercury air pollution that has been measured in various areas and this particular study found that the more mercury released in particular areas, the higher the autism prevalence and need for special ed. schooling. Harvard Professor Martha Herbert MD referred to this study in her lecture at the DAN conferences in both 2007 and 2006. This particular study is called, “Proximity to point sources of environmental mercury release as a predictor of autism prevalence” This study was lead by Raymond F. Palmer, Ph.D., associate professor in the Department of Family and Community Medicine at The University of Texas Health Science Center at San Antonio and published in the journal Health & Place (Elsevier). The more I read, the more I start to think that autism is a very complex issue. Vaccines are not the only issue at hand. There are many other areas that need attention. I keep wondering about Iceland and what causes so many children to develop autism in our country. I fear it may be pollution that comes from other places and perhaps we consume it in one of our most precious resources, our food. One experiment described by Marla Cone in her book Silent Snow took place shortly after 20,000 seals died of a virus on an island off of Denmark. A researcher named Peter Ross noticed that seals in other parts of the world also had been exposed to this same virus, but did not die due to their exposure. So he and colleagues set up an experiment under the supervision of the Dutch government. They took seal pups from the shores of Scotland and raised them in 2 groups. One group was fed herring (sild) from the Baltic sea. The other group received herring which came from the less polluted Atlantic. They say that the difference of PCB intake was 10 fold. Then later they measured the immune systems of the seals by examining T-cells levels. It was found that the seals receiving food from the Baltic Sea had 35 % less T-cells than the other group. Martha Cone claims this level of immunity loss is comparable to that of AIDs patients. The frightening thing about this finding is that the herring fed to the experimental group was simply bought at a Dutch fish market and was being served up on European tables. This makes me wonder about pollution levels in Iceland. How safe are we? I have often read about Icelanders and how they are increasingly in need of allergy medications. This is one of the symptoms described by Marla Cone. PCBs and mercury cause a weakening of the immune system. Both allergies and often digestive problems go hand in hand with mercury poisoning. This totally describes both me and my autistic sons health issues. We all have allergies and food intolerences and digestive problems which are also said to be common among individuals with autism. I have also heard school employees talking about the increasing need for special types of education with more and more students having dyslexia, ADHD, autism, etc. Could it be that all these problems are related to a toxic environment or is it really just better diagnosis and more students being mainstreamed? If this speculation I am doing has any element of truth, then I also ask is there any hope for the children of the future? That is my concern. I am afraid that things may look pretty sad indeed.
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18.06.2008 14:55:33 / carrie
Did you know that in Iceland like everywhere else that children’s vaccines used to contain mercury? Mercury is a known neuro-toxin that can cause neurological damage to individuals. It is also said to damage the immune system and the digestive system in both animals and humans. It is also said that mercury can be passed on from mother to child during pregnancy. The mercury preservative that is used in vaccines is called thiomersal or as they say in America thimerasol. Many countries including Iceland have removed thiomersal from the vaccines of young children or reduced it to very small trace amounts. The USA has been slower in this process and as of in1999 mercury was dramatically reduced in American vaccines accept for their flu vaccines. Today in the USA some recommended vaccines including the yearly flu vaccine still contain mercury. If you don't believe me just check it out on the website of the American CDC. In Iceland mercury is not found in the vaccines of young children according to information I found on doctor.is. However, this substance remains in some vaccines for both teenagers and adults. Personally, I wish all vaccines were mercury-free. Just so you all know, I do vaccinate my children. Did you know that other concerning substances in vaccines besides mercury are also being protested? This includes substances such as aluminum, ether and anti-freeze? I feel concerned. I worry about the research connected to vaccine safety. Much of this research comes from the USA and there, vaccines are a billion dollar business with various political connections. Vaccines made with the mercury preservative, thiomersal are more profitable for vaccine companies. Today in the USA, children receive 36 vaccines before entering school at age 5. Why have we not followed in the American’s footsteps regarding vaccination here in Iceland? Our vaccine schedule in Iceland is no-where near 36 vaccines before the age of 5. Could it be that money and politics are involved in the Americas decisions to vaccinate like maniacs? There are lots of accusations among powerful people in the USA concerning this issue. Could this be a result of a privatized medical system? I personally feel much safer here in Iceland regarding vaccination. There has recently been much dramatic news in the USA regarding autism and vaccines. The American government has rewarded 2 children compensation for their vaccine injury causing autism. It has been accepted by the American government that vaccines can cause autism if a child has a mitochondria dysfunction. This information is relatively new and if you are interested in news reports regarding the courts decision I suggest going to the website
http://www.autismmedia.org/media11.html On this site you will find CNN and other stations that reported the court case of the Poling family. Some are predicting that in the future there will be a new label for some cases of autism called mitochondria-autism. Mitochondria are the power houses within cells that produce energy for our nervous system. They say mitochondria dysfunction is rare in the general population. However they are finding the prevalence to be higher in the autism population and these numbers vary between researchers. Some are saying figures are as high as somewhere between 20- 30%. They say the prevalence is even highest among those with regressive autism. These issues are very new, and it will be interesting to see what the experts have to say about the prevalence after these issues have been better researched. Another hypothesis for the cause of autism is the mercury hypothesis. This hypothesis is not new, and as I write this blog the mercury hypothesis is being tested in an American Federal court of law that specializes in vaccine injuries. Nothing has been decided yet. The arguments go both ways. The government has their studies and private organizations have also been conducting studies. The Recently former head of the National Institute of Health (NIH) in the USA, Dr. Bernadine Healy, appeared in an interview on CBS TV and stated that the possibility of vaccines causing autism has not been adequately researched. She stated that some governmental officials have avoided looking into the possibility due to fear of what they might find and how the findings could potentially affect the public. She said more research is needed. To watch the interview with Dr. Healy you can go to either of the following addresses. http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml http://www.cbsnews.com/blogs/2008/05/12/couricandco/entry4090144.shtml
Did you know that no large scale study has ever compared autism prevalence among non-vaccinated and vaccinated children? Why is that I wonder? So the controversy continues. I have often been asked by other parents what to do. Should we vaccinate? I think in most situations that we should trust our government here in Iceland, and vaccinate our children. After all the Icelanders do not take part in the vaccine mania like the Americans do. They seem to vaccinate in a sensible way in Iceland as in comparison to the USA. However issues are getting more complicated. Some are concerned about the MMR vaccine. I discuss that in my book. So I will not mention it more here. After my experience with my children I believe that many of our children have sensitive immune systems that should be taken into consideration when vaccinating. Many are now saying that children that have a mitochondria dysfunction need extra immune protection. They are sensitive to both toxins and illness which make things difficult. They need their vaccines, but they also need to be vaccinated carefully and safely. As a parent I believe it is both a parent's and doctor's job to make sure a child is in good health when receiving vaccines. I believe it is important to find a doctor one can trust to discuss these types of concerns with. It is obviously important to vaccinate wisely to prevent cases like Hannah Poling´s case, the girl with mitochondria dysfunction in the much talked about court case in the USA. She is the first child to receive compensation for vaccines causing autism. We must remember that vaccines prevent various diseases which can also cause horrible handicaps. So now we need to wait for the verdict to come in from the scientific community and tell us how do we vaccinate safely. Even in the USA, most autism advocates are not against vaccines. They just want to have a safer practice. American children often get 5, 6, 7, 8, even 9 vaccines in one sitting as in the case of Hannah Poling. I have never heard of any such thing occurring here in Iceland. So we have to understand why American parents are protesting, and realize that the situation is very different in the USA than in Iceland. I personally understand why they are fighting so hard for change, and I would likely join them if I lived in the United States. Actors, Jim Carrey and Jenny McCarthy led a big protest in Washington DC in June, 2008 called "green the vaccines!" People want the vaccines to be free of ingredients like mercury, aluminum etc. They also want the schedule to be reconsidered saying that 36 vaccines before the age of 6 is "too many, too soon". In the past 2 years I have attended 2 conferences about autism in the USA. One thing that is so different from Iceland is the stories of dramatic regressive autism you hear from other parents. Strangely enough these stories usually are very similar. Parents of autistic children in America will tell you, my child had speech and social play. Then they will usually describe some sort of health issues their child had that required extensive antibiotic use. Then the story usually goes on to the multiple vaccines a child receives on one day, and as a result of the vaccines the child develops a fever that lasts for many days or even weeks. I have even heard one mother tell her child had a fever for a year after receiving vaccinations! Then they typically describe a gradual decline in the child’s behavior and symptoms of autism appearing. Never have I heard an Icelandic parent tell this type of story. Maybe it is because our vaccine schedule is less and maybe therefore safer? I don’t know. But if toxins from vaccines could be causing autism in the USA, what is causing the increase in autism in Iceland????? After all, we don’t vaccinate like mad men in this country, but we still have an alarmingly high rate of autism.
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18.06.2008 14:13:07 / carrie
Did you know the prevalence of autism has risen 1500% in the last 20 years? That’s what the Autism Research Institute in San Diego is reporting. The rate of autism has dramatically risen all over the world in very alarming rates including Iceland. The question is why? Many say autism can’t be100% genetic because genetic illnesses don’t increase in the way autism has. Some say this increase is simply due to better diagnosis. Others claim that environmental toxins are playing a role. Could it be? Are our children getting sick do to environmental- pollution?? Well known psychologist the late Bernard Rimland believed our children are developing autism and many other disorders due to modern day environmental pollution in his recently published book Dyslogic Syndrome. In this book Rimland talks about the lack of nutrition in our fast foods and environmental toxins and the controversial vaccine issue and various other issues that he believed are affecting our children’s ability to learn and behave in a normal manner. Rimland discusses much more than just autism. He discusses behavioral problems and various mental illnesses that are also supposedly on the rise. I would recommend this book to anyone who is interested in child development issues. It is an eye opener! After the experience I have had with my own children, I have come to believe that environmental illness is here and it can be easily observed in all the increasing behavior problems and learning disorders our schools are dealing with on a daily basis. Rimland claims we are avoiding the real issue by not looking at the possible biological causes of these conditions. He claims that autism and many other conditions that our children are suffering from are treatable by using environmental medicine.
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18.06.2008 10:58:41 / carrie
My son, Arthur is 8 years old now. Today he is a child that loves to laugh and joke. Look at him! Does this boy look autistic to you ?
He has friends his own age that come and knock on our door asking to play with him. 
He now knows what it is to have a birthday and celebrates his birthday with complete and utter joy! He hasn’t always been able to do this. Again I am so thankful! Today my son, Arthur is a participating member of our family. It is hard to remember how it used to be.  One can hardly believe after meeting Arthur today that he was once a child that threw himself on the floor 30 times a day screaming. Nobody used to want to be around him, let alone play with him. Again I consider myself very lucky. Arthur received applied behavioral analysis (atferlisþjálfun) starting around age 2 and a half. Today he attends normal elementary school and is doing quite well. He has not completely recovered. He has severe speech difficulties despite his wonderful social skills but he keeps improving. Again we had to change his diet. Arthur had severe diarrhea until he was 5. He was definitely malnourished. In my book, Barátta fyrir Börnin, I give the details of his severe stomach problems. Nutrition and digestive problems are big issues in autism. Does this sound familiar to any of you other autism parents? I have talked to many of you other autism-parents through the years and I have heard about so many other children with similar symptoms. Some like Arthur have chronic diarrhea. Some have chronic constipation. Some have both. Almost all kids with autism don’t eat healthy diets. Why is diet not an area looked at when treating autism???????? The Autistic Research Institute in San Diego California gives up the statistics that 15% of American children with autism have chronic diarrhea. If both chronic constipation problems and chronic diarrhea are included in the statistics, the Autistic Research Institute reports that more than 50% of American children with autism fall into this category. Most people don’t relate their child’s autism to their digestive difficulties. I certainly didn't. Therefore we parents don’t report this kind of information when we take our children in to be diagnosed for autism. We simply struggle with the stomach problems thinking it is a separate issue. But is it? After seeing my children’s progress after changing their diets and getting their tummy troubles under control, I saw real progress in their development. Many other parents are reporting similar things.
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06.06.2008 16:36:53 / carrie
My formerly autistic son, Nikulas is 14 yrs old now. He doesn’t want his picture to appear in this blog nor in my book. He does however know how important it is to inform other parents about autism. Therefore he gave me permission to share his story with you all. When Nikulas was 4 years old we were told at “greiningastöð” the Icelandic Diagnostic and Counseling Center that he would never be social nor could he learn to put 2 words together. We were heart broken with this news, but we decided not give up on our son. Boy, was that diagnosis wrong. Today Nikulas is free of extra assistance in school. His grades are above average. 6.8 is his average grade last semester! He takes care of his own homework. I don’t have to stand over him and follow up on his school work. He takes responsibility for himself. He is socially normal enough of a teenager to not want his picture on this blog site! How did this miraculous change happen?I believe it happened due to a combination of things. First of all, I believe that a change in diet opened the door for Nikulas to feel better and learn. Certain allergens plus other foods he had an intolerance for were removed from his diet. Allergens can cause the nervous system to become inflamed. My son’s dramatic progress after a change in diet was for the most part due to pure luck. When we moved to Norway when Nikulas was 5 his diet changed. Unknown to us he was allergic to nuts and oats. In Iceland I often gave him honeynut Cheerios. Cheerios was not available in Norway. What a lucky break that was! In Norway Nikulas received very intensive therapy that was very similar to Applied Behavioral Analysis ( atferlis Þjálfun). This therapy definitely changed Nikulas and gave him a chance at living a normal life. I believe that every child should have that chance. Parents shouldn’t have to argue with their communities to find assistance for a child with autism. Do parents that have children with cancer or other treatable illnesses have to argue for quality treatment? Why should autism be handled like it is hopeless when it isn’t??????? You can read the statistics about recovery and ABA( atferlis Þjálfun) in my book. It is the best-known treatment for autism at this time and it is available here in Iceland!!! That’s what I always tell people when they tell me they know of someone newly diagnosed with autism. I always say, “Do they know about ABA -atferlis þjálfun? Its your best hope. Look into it!”
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06.06.2008 16:35:03 / carrie
This is me (Karen) and my husband Olli. We are the proud parents of 4 beautiful children. Unfortunately, 2 of our sons have not been well and have needed extra help. They were both diagnosed with autism when they were little. I call myself an autism mom because autism affects so much of what I do everyday. Other mothers of children with autism would likely tell you the same thing. Autism changes you as person and a parent. Through the years Olli and I have learned all sorts of tricks to deal with autism. You learn a lot when you go through it twice. No child is exactly alike and the symptoms of autism varies between children. I thought it was about time for a mom to speak out here in Iceland. So I wrote a book and thanks to ,umsjonfelagið enhverfa which is the society for autism in Iceland, my book has been translated into Icelandic. My family’s story, Baratta Fyrir Börnin is soon to be published by Salka. In English Baratta fyrir Börnin means Battle for the children. I have tried all sorts of things to help my kids feel and function better. Some things have worked. Others haven’t, but believe it or not I consider my family to be very lucky because I have been able to find ways to help my children improve. Not everyone has such luck, and my heart so goes out to them. My book, Baratta Fyrir Börnin, tells my 2 boys stories in detail. I wrote this book with the intention of getting needed information out to other parents. All proceeds from this book will be donated to help children with autism. So please spread the word. Autism is treatable!!!!!That’s my message to you
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21.05.2008 20:03:19 / BlogCentral
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