About 100,000 years ago, a woman known as ‘Mitochondrial Eve’ existed in Africa. She is actually the mother of us all. Isn’t that an incredible thought? That we all came from one woman in Africa? She gave birth to children, who grew and gave birth to their own children, who grew and gave birth to their own children. You get the idea. In the last hundred thousand years, lots and lots of babies have been born. We still have a lot in common with those ancient ancestors of course, however there are a lot of tribes around the world who have a lot more in common than us in ‘civilised society’. It seems to me that of all the creatures on the planet, human beings seem to be the only ones capable of de-evolving and that is becoming more and more obvious as time goes on, and it’s going to get more and more problematic. In many ways as a species, we have come so very far. We have created the most incredible creations, built the most beautiful buildings, painted the most glorious paintings, and every day new discoveries and advancements are being made. Advances in health, advances in technology, advances in our understanding of the universe and how it came to be, but there is a price to be paid, and it’s a big price. We are losing a very valuable commodity in the process. One that has been with us since the dawn of human kind, and that is the very thing responsible for the fact that we are still here all this time later. I hear you wondering…Is it common sense? Is it manners? Is it the ability to pull our pants all the way up without exposing part of our underwear? Well, obviously it’s not the last one, although, I do have an opinion on that matter, but no, it is something much bigger. It is instinct. As Gavin De Becker says in his book ‘The Gift of Fear’, “Only human beings can look directly at something, have all the information they need to make an accurate prediction, perhaps even momentarily make the accurate prediction, and then say that it isn’t so.” What he means is, even when we have information in front of us, we have been conditioned to override our instincts in favour of information from another source rather than to trust all of the information coming in from our senses. Our sensory system is incredibly complex. It is capable of processing enormous amounts of information simultaneously from our senses, such as visual and audio clues, smells, temperature changes, and our environment, to moods and expressions on the faces of others, as well, i’m sure, as abilities that are yet to be discovered and this can all happen within seconds.
I think there are many reasons for this and when you think about it you may have had the experience of overriding your instincts before. Think about teenagers? Plenty of teenagers will ignore their instincts, and get into a car with a drunk driver, or try drugs in favour of looking cool, and how many of them have paid a terrible price? As a society, we tend to look down on people who trust their own instincts and instead trust a specialist or expert. I have had this experience many times, and not to blow my own trumpet, but my instincts are always, always right, no matter what the specialist has said. As a very basic example, a couple of years ago, Fraser had some very odd and very extreme behaviour. I knew something other than Autism was at play. After a few months of research, I asked his paediatrician to test him for the presence of Streptococcus antibodies. I had done my homework, I had put the pieces of this new puzzle together and I was at the point where I just knew it! Of course, I had to convince her to agree to the test. She gave me many reasons why I was wrong, rather than trusting my instincts. I persisted, and of course, even though he was not ill, he had a large amount of strep antibodies wreaking havoc on his brain. My instincts were correct, and my goal was in no way to prove her wrong, because I honestly didn’t care what she thought (I am well used to be looked at and spoken to like i’m a nutter) I just needed to solve the problem and get my boy back. Blood tests for any child are difficult, but it is downright dangerous trying to draw blood from a kid like Fraser. It is not something I would ask for if I didn’t have a good reason. I am not out looking for problems that don’t exist and I don’t have’ Munchausens by Proxy’! This was yet another lesson on why I should trust my instincts. To take what specialists say, not necessarily as gospel, but as information to be digested, taken apart and used in a way that make sense…that computes! I do believe that these specialists really do mean well and they should get credit where credit is due, as they do amazing work. They are giving you information that they have learned from years and sometimes decades of training and experience, however, it is not necessarily relevant to your child. I have had MANY experiences like this with Doctors and specialists, and I can honestly say, that there are 3 or 4 that I have seen over the last ten years that have actually listened to ME! There are those that respect my observations and take them seriously then there are others, like one paediatrician who called me ‘strange’. Seriously!
Autism is sadly not going away any time soon. In fact, I read the other day that in the USA, the statistics have jumped to 1 in 50 children!!! Can you imagine the outcry if Autism was infectious or fatal at that rate? Things would certainly be happening at a faster pace. Governments would be throwing money at the problem as they did with AIDS and the SARS virus. While Autism is not a terminal illness in the traditional sense, it is completely and permanently life changing, and I think we as a species need to reorganise our priorities on many issues, not just this one. Don’t even get me started on Euthanasia for the elderly or terminally ill!!! As it stands, the responsibility of curing and/or preventing Autism Spectrum Disorder falls to a relatively small amount of researchers, specialists and incredibly dedicated parents. If you are not familiar with Autism research, you can’t imagine the work some parents are doing and the commitment they are giving to their children. There are incredible people doing incredible things, and often they have to do them against medical advice because the doctors don’t advocate these treatments. I am not a member of any Autism chat rooms but I do read what other people are doing and I am in constant awe of the work these parents are doing. There are some truly incredible people out there. There are amazing doctors too, who are doing incredible work on the gut, there are people doing work on under methylation and how it not only affects Autism, but many other diagnosis as well, and working out therapies . We are progressing….BUT, it is my belief that this progress will invariably be stunted, until specialists and experts start listening to parents and patients. Not just in relation to Autism, but to any health issue. There are so many examples of what happens when a determined parent and a specialist come together as a united front, one of my favourites is of course Mikaela and Augusto Odone, you might remember them from a movie called ‘Lorenzo’s Oil’. In 1984, Lorenzo Odone, son of Michaela and Augusto, was diagnosed with a terrible degenerative, and ultimately fatal disease called ALD. Unable to accept the fact that there was nothing that could be done for their son, they set about finding a cure themselves which they did. While it came too late to reverse Lorenzo’s disease, they did stop it in its tracks. Their cure, Lorenzo’s Oil, has saved thousands and thousands of boys from a terribly long, slow and painful death. Then there is the incredible story of Ellen Bolte whose son Andrew, was born normal and developed normally for three years. At the age of three, he was diagnosed with an ear infection and prescribed antibiotics, which didn’t work, so the doctor prescribed five more courses of antibiotics. FIVE! What happened while he was on the antibiotics was what his mother describes as ‘shutting down’. He became withdrawn, and didn’t want to be touched, he lost all of his speech and began eating non food items. He also developed many gastrointestinal symptoms. He was eventually diagnosed with severe regressive Autism. She studied her son and investigated what was going on in his body because she knew he was in there still, and she desperately searched for a way to get him back. After endless hours researching, she discovered that a virulent strain of bacteria called Clostridia seemed a likely candidate for the symptoms Andrew was suffering from . Clostridia are a very hardy pathogenic bacteria that release neurotoxins that affect the brain. She began writing to doctors asking for help. She finally took Andrew to a gastroenterologist who, at his mothers request, gave him an antibiotic to target Clostridia, and within ten short days, her son was back to normal.It was a true miracle. Ellen and the doctor, took the information to renowned microbiologist Sydney Finegold and he agreed to help them do a pilot study on other children. Upon testing, Dr Finegold found higher than normal amounts of Clostridia in children with Autism. But there was a catch. When Clostridia are attacked (by antibiotics), they release spores that are antibiotic resistant so the life cycle continues, reinfecting him with the bacteria once again. Heartbreakingly he went back to being severely Autistic. The antibiotic was incredibly strong and there was no way he could stay on it for life without doing serious damage to his other organs. He is now in his 20’s and doing okay on ENORMOUS amounts of probiotics that help to suppress Clostridia, but he will never be ‘normal’. The initial success should have been enough for researchers to take notice and try to find a way to kill the Clostridia spores, possibly helping thousands of children who might be affected by Clostridia in relation to their regressive Autism. So what happened? Not a damn thing. No matter how much Ellen and Finegold pleaded, no one would listen. They published a report in a peer reviewed medical journal and still….nothing! What a tragedy this story is. After all of that effort, the blow of having a child with a major disability may have been softened by the fact that his journey helped other children. But alas, these incredible break throughs are a distant memory. For some bizarre reason, Autism is viewed as a brain disorder and nothing more. Perhaps once the brain is picked apart nanometre by nanometre and nothing is found, will the hunt through the rest of the body begin. I’m not saying that it’s not possible that the brain is not involved in triggering Autism, but there are many other factors such as allergies and digestive issues that are common denominators and they are being completely overlooked. I find it so strange. I have only just discovered, that while it seems that Fraser doesn’t have a problem with Clostridia, he is totally lacking (he literally has 0%) of one species of good bacteria in his gut, as it has been totally dominated by another species. This is a friendly, good bacteria, however…it’s a bacteria that release amines including good old Histamine. So, we now stand at the cross roads. Do we give him an antibiotic to stop this good bacteria from multiplying further, and possibly ‘unleash’ something else like it did in Andrew? I don’t think so. As much as I would LOVE to try it, the risk that he could get worse is as great as the risk that it could work. So our journey forward will continue with probiotics and supplements at this stage.
Ellen and the Odone’s followed their instincts, no matter what outcome they were told. They KNEW they could help their boys. They knew that no one else would invest as much into their children as they would or could and they knew they had everything and nothing to lose if they didn’t at least try. Many, many lives have been saved as a result of the Odone’s work and there is still the possibility that Ellen Bolte’s work could be lifechanging for countless families if the research is continued on Clostridia and other pathogens.
We are living in a wonderous time were we have access to a world of information. If we don’t like or agree with a doctor or specialist, we are spoilt for choice and can find one that we do connect with. We can learn to trust and listen to our feelings. We don’t have to push them down, suppress them and talk ourselves out of them. The difference between being nervous and fearful, can be two different things and I think the time has come to reawaken this lost gift, reignite the senses and harness one of our most incredible and ancient powers!
Kitty xx
AUTnotISM 