Guts, Bugs & Treatment

Guts, Bugs and Treatment

One family’s journey with Autism Jim Chapman and Jane Wills March 2013

Treating Autism Publications, 2013 ISBN 978-0-9575787-1-5

Contents Introduction

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Chapter 1 A son is born and causes an unimaginable amount of trouble

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Chapter 2 What’s gone wrong?

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Chapter 3 What can be done?

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Chapter 4 What’s next?

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Key research resources

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Useful organisations and websites

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Eric’s test results

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Introduction Having a child diagnosed with autism is becoming an increasingly common experience. The latest figures suggest that around one in every 100 children in the United Kingdom is now classified as autistic. As a parent of one of these children you are told that the condition is the result of some sort of genetic malfunction and your child will be autistic for life.

This pamphlet tells the story of our journey into the world of autism. We have written it to give heart, hope and courage to other parents who are in a similar position. Despite what you are told by the professionals you meet at the school, council and hospital, there are things that can be done to make things better for you and your child.

Our son regressed into autism between the ages of 2 and 4. During that time he became increasingly allergic and developed terrible eczema; his behaviour and communication deteriorated; he stopped sleeping; and his bowel gradually stopped functioning. At times, we thought he was going to die.

Something caused him to become so desperately ill and to lose the skills he’d once had. Since diagnosis, we have been on a mission to find out what is behind the condition. The knowledge we’ve gained has then helped us to improve his health, happiness and development. Although he is still autistic, our son is now free from eczema and he sleeps, eats, defecates,

communicates, engages with other children, and is starting to learn. We still have hard times but things have really improved.

Remarkably, the medical profession don’t regard a child like ours to be ill. Once you have a label of ‘autism’ doctors and consultants appear to be blind to the symptoms that would normally provoke a response. Thousands of children are left in a state which means they don’t eat or poo without pain, hardly sleep and struggle to go out in public. This is part of their autism and it is not benign. We argue that it reflects a problem in the immune system and it manifests in a range of symptoms and behaviours that are responsive to treatment.

There is now a developing stream of academic research that backs up our experience. There are also a growing numbers of parents sharing their experiences of helping their kids to recover. A recent research paper by Deborah Fein and colleagues from the University of Connecticut, USA, published in the prestigious Journal of Child Psychology and Psychiatry, documents the amazing progress made by a group of children who lost their diagnosis of autism.

This challenges the dominant view that autism is a lifelong disability. We are standing on the brink of new revolutions in science that will have major implications for our understanding and treatment of many chronic conditions, including autism. We have written this pamphlet to help make it happen.

Fein et al (2013) Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54, 2, 195-205.

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Chapter 1: A son is born and causes an unimaginable amount of trouble Eric Trevelyan Chapman Wills arrived in a hurry on 13th October 2003 and he’s caused an unimaginable amount of trouble ever since. Even his birth was spectacular. We crashed over the speed bumps between Forest Gate and Homerton Hospital in east London just in time to push him out in the pool.

Eric was a tiny baby weighing just over 5lbs. There in the ward he seemed so frail next to the babies that were twice his size. Yet where he was lacking in size, Eric more than compensated with noise. He cried loud and hard for almost the whole of his second night on the planet. Other mothers and even the staff looked askance as feeding, winding and cuddling fell on deaf ears. Although things improved when we took him home the next day, Eric was a restless baby. He cried a lot during those first weeks of life and this was likely a reflection of the underlying problems that later came to the fore.

We loved our new boy. He started to grow and did all the things he was expected to do. When he was just eight months old he joined a group of children being cared for by an experienced child-minder and he stayed with her for well over a year. Angeline produced some wonderful film and you can see Eric pointing, talking, painting, kicking a ball and playing just like a normal boy would do. In a sobering clip that would later come back to haunt us, you can see him cuddling a doll, sitting her in a chair and pretending to give her some food. We later found out that handing a child a doll and the tools needed to care for them is a classic test of dysfunction in children. While Eric did what he should when he was 12 months old, he would later have absolutely no interest in dolls and show no sign of doing anything appropriate with dishes and spoons.

The regression into autism It was some time before his second birthday that Eric started to regress into what we later came to know as autism. He began to display a series of symptoms that we now associate with the developing

dysfunction behind the condition. Our wonderful boy started to suffer from diarrhoea that later turned into constipation, faddy eating, worsening eczema, insomnia, hyperactivity, terrible tantrums and acute anxiety. Eric started to develop some odd behaviour that we never associated with autism. In fact, we used to think that these oddities were endearing signs of a would-be genius. We would laugh about him giving Nureyev a run for his money as he could jump and land on the tip of his toes. We would revel in what looked like unalloyed joy as he sat in the buggy and flapped his hands like a bird. But we would also wonder at his extreme paranoia about the strangest of things. Eric became so frightened of his grandparents’ weather-vane that he could not walk past it or even look out of the window in its general direction. When we took him on holiday to Wales in the summer of 2006, we discovered that he had an absolute terror of sheep. The sight of a furry lamb would trigger panic and screaming until we retreated to safety. Imagine going on holiday to rural Wales only to find it impossible to encounter a sheep!

Shortly after Eric’s second birthday, we moved house.

By then his bowel was the most obvious sign of a problem. When he started with Carina, his new childminder, we would often pick him up and find his clothes in a bag. Even his nappies couldn’t contain the runny, foul-smelling poo, that would pour out of him during the day. Carina would wash him off in the bath, rinse his clothes, put on new ones, and treat it as a regular part of the job. She did everything he needed and more, cooking him food that he would not eat, buying him the treats that he craved and trying to reduce his anxiety. Looking back, it is hard to imagine why we were not panicking by then. But even if we had asked the doctors and health visitors they would have told us that things like this are common in kids.

Bowel problems and allergies are usually considered normal these days.

We were also thinking about our experiences of caring for our daughter. Agnes is five years older than

Eric. She had been born with eczema on her eye-lids which dramatically worsened during her first years of life. By the time she was two, we would find her scratching her skin until it bled. We used to come home from the doctors with buckets of cream but the problem just got worse. Eventually, a chance encounter with a woman at a Tesco’s checkout in Leytonstone helped. She told us that her son had been exactly the same. When they took wheat and dairy out of his diet he got better and while it seemed radical at the time – although not a patch on what we have been through since – we cut out all dairy, wheat, eggs and sugar from Agnes’ diet. It was an absolute revelation to find that her skin was starting to heal just a day or two later. Wheat was causing the problem and, without it, the eczema disappeared.

When Eric started to have his problems we thought that it must be a repeat of the same issue. When he was about two and a half, and the eczema and the diarrhoea were getting worse, we thought again about diet. At that time, Eric’s eye lids were very swollen and sore. He would sit and scratch for much of the day. Just as with Agnes, we eliminated the obvious foods. But this time, the problem was milk.

Without milk, butter, yoghurt and cheese, Eric’s eyes calmed down and some of the eczema disappeared.

Even better, and unexpectedly, he also stopped screaming when he woke up at night. Whereas he had regularly woken up in a state of inconsolable anguish which took us hours to calm, without milk in his diet he was much calmer when he woke up at night. His sleep patterns were deteriorating but at least when he woke, the screaming was markedly less.

By Eric’s third birthday, we were expecting a gradual improvement from the allergies and bowel problems after the removal of milk, but this was the year he got worse. By the time he was three and a half, Eric was suffering from extreme constipation. Our little scrap of a boy would stand with his hip pushed to one side as he turned puce trying to deposit tiny little scraps of poo in his nappy. In what looked like an odd mating ritual, he also used to rub against the nearest piece

of appropriate furniture for hours on end. Moreover, given that next to nothing came out of his bowel, it became very difficult to get him to eat. By this time, Eric looked malnourished. He had a swollen abdomen, tiny arms and stalks for his legs. He ate next to nothing, slept very little, cried a lot of the time and was covered in eczema.

We were beginning to panic and our visits to the doctor and our requests for referrals started to grow.

We tried liquid paraffin, Lactulose, Senna and Movicol but none improved his chronic constipation. At the same time, it was becoming clear that Eric had very serious challenges with behaviour, socialisation and learning. Although we were blind to the scale of the problem, the workers at his new nursery were quick to call us in with ‘concerns’. By the time that we were in the queue for an official assessment, we already knew the result. Diagnosis by Google took just a few short minutes – type in hand-flapping, toe walking and lining up your toys – and you get the answer as clear as day. Our son was autistic.

In common with others, we had always thought autism was about failure to make social and emotional contact with other people, but Eric has always been incredibly affectionate towards us, his sister and grandparents. We thought we had an allergic, sensitive child, not a permanently disabled one. We were in a state of shock akin to bereavement.

Other people mainly think about autism through the lens of the film Rain Man; they believe your child will just be a bit odd and become a bit of a boffin.

They have no idea that autism can mean you have a child who screams a lot, struggles to communicate and looks like having permanent learning difficulties.

Autism comes in a lot of different shapes and sizes, and for understandable reasons, those at the most able end of the spectrum have been demanding to be treated as ‘different.’ However, when you are the parent of a child at the more severe end of the spectrum, you want more than a respect for their ‘difference’; you want their obvious health concerns to be taken seriously and acted upon.

Diagnosis, doom and gloom After what seemed like an interminable wait (actually about ten weeks) for what was called the preliminary non-diagnostic assessment, a community paediatrician gave us the official confirmation that Eric had severe autism. He was almost four and a half years old. He had failed (or passed) just about all of the tests and ended the assessment by tantruming the doctor’s books and toys all over the room. Even the kindly doctor seemed shocked at the volume and ferocity of Eric’s screaming and took sufficient pity on us to give us a diagnosis before she was really supposed to. She told us Eric had severe autism, the kind that you were going to suffer for life. She took no account of the bowel, sleep and allergy problems and told us there were no further medical assessments or treatments. We were to be invited back in a year or two’s time for a routine appointment but there was nothing else to be done.

It was as simple as that: we had had a normal baby who had regressed into autism and he was going to be like this for life.

We were bewildered. The health professionals had done their work. We were left with the diagnosis and then faced a battle to get educational assistance in school.

When we left St Ann’s Hospital in Haringey on that D-day in February 2008, we were told to claim Disability Living Allowance, make sure that the Education Services provided help at school and try to get Social Services to provide us with respite care.

The official position was – and remains – that autism should be treated as a matter of communication and learning impairments. In 2011, the cost of autism services in the UK was an estimated £28 billion, and this immense sum mainly comes from the collective budget for welfare rather than the one funding health. Even though our experience of allergies, bowel problems and insomnia are shared by many of the other parents of autistic children we have met, and particularly those at the severest end of the spectrum, the condition is still officially understood as being a disability affecting the mind.

Beyond the official view, however, as soon as you put a foot outside the hospital and away from the professionals, you enter an alternative universe where people link autism to the environment. Some parents draw parallels with the canaries that were taken down the mines to detect dangerous gases during the early years of the industrial revolution: when the yellow bird died you knew there was trouble. Today, many see our kids as the canaries in the mine of a society that has invented new chemicals, new drugs and new vaccines without knowing the side effects. Autistic children can be viewed as sirens of an existential threat that has yet to be noticed, let alone acted upon; nature’s revenge for upsetting the natural order of things.

While reassuring to the extent that it leaves your genes off the hook and implies there might be something you can do to improve the situation, this analysis can be almost as overwhelming as the official position. While you are struggling to come to terms with the fact that your beloved child has a life-long disability and will likely never be able to look after themselves, you are also getting increasingly paranoid about everything you put in their mouth. Even a glass of water looks suspect due to the possibility of chemicals and heavy metals lurking within. In addition, the environmental theory means that you are confronted by a cacophony of possible causes and treatments. For some, autism is caused by the heavy use of antibiotics, and the poor-quality bowel microbiota passed on from the mother. For others, vaccinations are at the heart of the problem, either due to the viral pressure they put on the immune system or the toxic stabilisers used to preserve them.

Others blame environmental toxins and heavy metal poisoning, and there is yet another group who blame some undiagnosed infectious agent as when scientists found HIV as the causative agent of AIDS. Such a multitude of conflicting ideas means that there is no clarity about the causes of autism, nor the best way to treat it. Every possible cause has a different possible treatment. We have been to a good number of conferences that are designed to bring parents, practitioners and researchers into dialogue about the condition and what we might do, and each ascent to

the podium provides a different world view and very divergent proposals for treatment.

Thus some of the prominent people in the alternative autism universe advocate diet, others go for anti-viral and anti-bacterial therapy, others focus on the immune system, and yet others advocate special therapy to remove heavy metals. While these conferences are a wonderful source of solidarity for us parents struggling with children who don’t sleep, poo, eat, talk, play or learn, we are also left in a fog. Without any clarity about the processes that lead to our children developing autism, we can’t embark on a proper plan for their treatment. Of course, some of the existing treatments do help, and a few children improve so much that they lose their diagnosis completely, but the overall numbers who fully recover are small. The kids who get better are a drop in the ever larger pond of children being affected by the condition; the latest figures collated in New Jersey, USA, suggest that autism now affects one in every 38 of their boys.

Facing the future together Even though our children are clearly unwell – and when you meet other parents it is shocking to find the extent to which our experiences are typical of the condition – autism is still not even seen as a matter of physical health. Although there has been an explosion of new medical research that provides glimpses into the roots of the condition (that we discuss in the next chapter), the challenge is to combine these accounts into a story that captures enough of the picture to develop treatments that work.

Over the past four years, we have been part of the international parent-led networks that have come together online and in person to try and get to the root of this problem. We have met some amazing parents who try to keep abreast of the latest research, publish their findings and ideas online, and look for places to meet and discuss. There has been a dramatic

democratization of science – largely unrecognised by the scientists who get the grants to do the research.

And although most of them don’t realise this, these scientists could benefit from working more closely with us; we are observing, researching and living with autism every minute of every day, and as a result, we have a rich experience and knowledge base that could be tapped to help find solutions.

In the next chapter we draw on this experience to tell you a different story about autism. We have pieced together some of the most recent research and have read it through the lens of our own knowledge and experiences to develop a more coherent narrative about the processes that lie behind the condition.

Drawing on published research as well as Eric’s story, we argue that autism is a condition that reflects the breakdown of the symbiotic relationship between the human body and the flora that live in the bowel.

We now believe that autism is the culmination of a process that starts in the small intestine, where the bacteria that should live in happy symbiosis with their host are no longer able to do so. In our children, some species grow more than they should and others are forced into decline. It looks likely that some of these organisms are able to penetrate the wall of the intestine and transgress the body’s defences. Particles of broken-down food and toxins from the bacteria reach the blood supply. In response, the immune system triggers inflammation in the gut and the rest of the body, including the brain. On top of this, the changed bowel flora struggle to produce the vital enzymes needed to break down foods, and many children with autism have undigested food in their stool. The bacterial changes and inflammation are also able to limit the absorption of vitamin B12 and iron – as well as other essential nutrients – on which the body depends. As a result, and as we outline in relation to Eric’s profile in Chapter 3, autistic children become malnourished and nutritionally deficient and start to develop biochemical abnormalities.

While we haven’t cited them in the text, some of the most important research papers are listed in the ‘key research resources’ section at the end of this pamphlet, and a more comprehensive list has been produced by the parent-led charity Treating Autism in their publication Medical Co-morbidities in Autism Spectrum Disorders: A primer for health care professionals and policy makers.

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What started as a fault in the intestinal immune system can cause a vicious cycle that leads to the range of problems that we have seen in our son: diarrhoea and constipation; food allergies; inadequate growth; and damage to the brain and neurological system (including sleep, mental capacity, mental health and socialisation). Thus, what is seen as a disability and classified as a communication and learning disorder or ‘difference’, is actually the symptom of a process of immunebacterial-biochemical dysregulation and dysfunction.

Our analysis explains how a range of apparently diverse symptoms ranging from eczema to anxiety, constipation to hand-flapping, insomnia to learning difficulties, are constituent parts of this underlying disease that has its origins in an impaired immune system.

This immune damage is likely to have been caused in-utero or in the early months of life by some kind of viral assault. Given that each child with autism suffers this impairment at a different time, and the impact on the body’s bowel flora will depend upon

the severity of this impairment, the nature of the existing ecosystem, the diet, the use of antibiotics and the way in which the child’s immune system is able to mount a defence, the severity of the condition will vary in each and every case. This said, however, the degree to which parents report, and children display, common symptoms is striking.

We know this sounds far-fetched but in the following chapter we flesh out the story in more detail. In Chapter 3, we describe what we decided to do and in the final chapter, we explore the wider implications of this argument. If our children are the canaries in the mine of society they may be telling us something about the chronic diseases that are now topping the lists of ill-health. Similar processes are likely to affect the development of diseases that obviously affect the bowel (crohn’s disease, coeliac disease), as well as those that are a product of the imbalance of biochemistry (arthritis, diabetes), and those that depend on a well-functioning immune system (most obviously, cancer but also allergies and chronic fatigue). We explore all of this in the final part of the text.

Chapter 2: What’s gone wrong?

In 2001, there was great excitement when scientists completed their map of the human genome. Many people expected this to provide new understandings of the human condition and to stimulate a revolution in new health treatments. As it unravelled, however, the project exposed the remarkably low number of genes involved in a human being. Scientists identified just 23,000 genes, which is less than the number found in a grape. It is now clear that the size of our genome is not enough to drive our complex biochemistry and for this, increasing numbers of scientists are arguing that we depend upon the microflora that live in our intestinal tract. Recent research has identified thousands of different species of organism, comprising millions of genes, living in the human microbiota. These organisms play a vital role in maintaining our health and once they get out of balance, they can result in all the problems associated with autism, but it is also likely to explain many other forms of chronic ill-health. Having a son with autism has taken us on an amazing journey to rethink what it means to be human (and we have come to recognise that we are fundamentally dependent upon the micro-flora that live in and with our bodies) and to rethink the theory of evolution that we all learnt at school.

Symbiosis and the perils of microbial destruction In his book The Origin of Species, Charles Darwin argued that evolution comes from the twin processes of genetic inheritance and competition for life in a changing environment. Those species that best fitted the environment had the greatest opportunity for reproduction, ensuring their survival and subsequent population expansion. Those genetic variations (think of height, build or colour) that brought significant advantage were reproduced and Darwin thought that additional genetic mutation would allow new species to form. Yet we now know that genetic mutations tend to lead to disease or ill-health (for example, sickle cell anaemia, cystic fibrosis and Downs Syndrome) rather than new species of life. In this context, some scientists are arguing that new life

actually emerges from species associating ever more closely together. As the environment changes, there are advantages for organisms that are able to acquire the adaptive characteristics of other members of their community, so that bacteria, fungi, plants and animals may become ever-more integrated with the organisms that can give them biological advantage such as additional nutrition, light, shade or camouflage. As an example, Margulis and Sagan cite the case of lichen that is a fusion of fungi and algae and can revert to its constituent parts when put in the appropriate environment. If you put lichen under water, the fungi drown and the algae grow and if you put the lichen in darkness, the fungi grow and the algae die. Lichen is a product of two species associating together and through time, and changing conditions, such associations can become truly embedded in each other, such that new life comes to exist.

This process of symbiogenesis is very significant in relation to human evolution because we depend upon microbes to help us digest our food, extract and create precious nutrients, and dispose of toxins and waste. Despite our current fixation on understanding the genetic make-up of the human being and its implications for health, our well-being also depends upon our relationships with these other organisms.

Our bowel flora has always played a critical role in allowing humans to change environment and diet.

This may include the breakdown of food-stuffs that would otherwise be indigestible, allowing us to tap previously unavailable nutrient sources and to colonise previously inhospitable territory. It may also include the development of our brains and associated cognitive development.

Despite this co-dependence on the micro-organisms living within us, however, we have been cavalier in our development of ever more anti-microbial chemicals and anti-bacterial drugs. During the twentieth century, our approach to illness sought to eliminate the threat of viruses and bacteria by either killing these agents (through medication and

disinfection) or by manipulating the immune system (through vaccination) to curtail and manage the natural response to disease. The dominant narrative has been that we can triumph over disease through the elimination or control of its causative agents and by clever manipulation of our bodily immunity. Yet we have neglected the fact that our bodies have evolved complex mechanisms for life that depend upon our interactions and symbiosis with the viral and bacterial agents that we are now trying to avoid or destroy.

Human immunity and respect for our neighbours It is important to remember that the immune system develops through its interaction with and control of the body’s symbionts as well as with invading microbes from outside the body. Our immune cells are our relationship builders, key to sustaining our reciprocal associations and the longterm viability of our symbiotic condition. The prime locus for this activity is in the intestinal tract. This long tube is designed to remain firmly ‘outside’ while being inside the body. The intestinal tract is open only at the top, where food is ingested and the bottom where waste is excreted. As such, it is designed to keep food and harmful agents away from the rest of the body while also making sure that we extract the substances needed to develop and grow. As the new-born baby ingests organisms in its milk, the developing immune system has to manage the relationships with the flora that come to live in the gut. The baby and the immune system grow together; there is a constant interplay between the bacteria and the immune cells, and the former stimulate the immune cells, shaping the way in which they recognise and respond to forms of life, filtering the hostile from the benign and beneficial.

Yet while we depend on the micro-organisms that live inside us, the immune system is actually devoted to ensuring that they stay inside the tube of the gut without being able to penetrate the intestinal wall.

As a result, the lining of the intestine is covered in a carefully maintained layer of mucosal protection.

Without it, the wall of the gut becomes vulnerable to bacterial colonisation and the penetration of

chemicals and particles that should not be allowed through to the rest of the body. Recent research has highlighted the way in which immune cells in the small intestine produce anti-microbial proteins that keep the flora away from the surface of the gut lining. When scientists have disrupted this process in specially-bred mice, the gut bacteria come into contact with the immune cells, causing an inflammatory response. These anti-microbial proteins are only just being explored, but they are also likely to be playing a key role in modulating the flora that come to be domiciled within the intestinal tract.

The political controversy that still surrounds the work of Andrew Wakefield (the British medical researcher who led the team who published a research paper in 1998 that raised a potential link between the Measles Mumps and Rubella (MMR) vaccine and the development of autism) has stymied the proper development of research into immune inflammation in the small intestines of autistic children. Wakefield and colleagues called this autistic enterocolitis, and whether this is the correct label or not, such processes are causing pain, gastrointestinal disturbance and nutritional deficiencies in thousands of children like Eric. Certainly, recent research that looks at the particular species of bowel flora as well as their by-products or metabolites (such as high levels of propionic acid) finds that autistic children have a different balance of flora in their microbiota to those found in controls. There is speculation that this could be due to the heavy use of antibiotics or a failure to breast-feed, but Eric did not have antibiotics before he regressed into autism and he was breast fed for over a year.

As we outlined in the previous chapter, Eric suffered with terrible bowel problems as he regressed into autism, and this is common in children with the condition. There are a growing number of studies that look at the incidence of gastrointestinal problems in children with autism. Although almost all of them measure symptoms rather than the actual flora in the gastrointestinal tract, and they each have different criteria for recruitment into the study and different

methods for data capture and analysis, they all report significantly higher levels of bowel problems than are found amongst non-autistic controls. A recent review of 11 different studies found that the incidence of gastrointestinal problems varied, affecting between 17% and 91% of children with autism, but all of the studies identified a higher incidence of problem than was found in controls. While there is a desperate need for more research, it is clear that many children with autism suffer with bowel problems. This, in turn, will be a reflection of the inability of the immune system to regulate the flora found in the gut.

It now seems that particular forms of bacteria appear in much larger numbers in the bowels of children with autism than in those without the condition.

In the early 2000s, Sidney Finegold and colleagues found an elevated presence of some species of clostridia in children with autism. More recently, others have identified the bacterium Sutterella and Desulphofibrio as being present in the intestinal walls of autistic children and as such, these organisms will be triggering the body’s immune system and causing inflammation at the site of the damage. In addition, it now seems that this immune activation is not confined to the original site and that the immune messengers, or inflammatory cytokines, can cause inflammation in the brain as well as the bowel. Researchers have also found that these elevated cytokines are particularly associated with the children who develop normally and then regress into autism and that the severity of the symptoms positively correlates with cytokine levels. When they have looked at the brains of deceased people who had autism during their lifetime, other researchers have found signs of neuro-inflammation in the cells in particular parts of the brain.

Immune dysfunction and Autistic Syndrome Disorder The reasons for the underlying immune problems that trigger this condition are likely to include exposure to pathogens in the womb or after birth. It has long been

known that viral infection can have a devastating impact on immunity. Once infected with viruses like influenza, HIV and measles, mammals are known to be more vulnerable to secondary infection. Measles – in both its wild and attenuated vaccine strains - has been known to cause diseases of the gastrointestinal tract, including inflammatory bowel disease, as well as having profound immunosuppressive effects.

The fact that many – but by no means all – of the parents of children with autism report that their child regressed after their vaccination for Measles Mumps and Rubella (MMR) is likely to reflect this immune-reactive and suppressive effect. Our son had a vaccination for Meningitis C on the same day as his first MMR shot. Sometime later he developed a high fever and a measles-like rash all over his body.

We assumed this was just a viral illness, and he slept it off in a couple of days. However, he was never the same again. The introduction of four viruses at once could well be a contributing factor to explain why his immune system was compromised such that it could no longer regulate his microbiota.

Similarly, there are documented cases of children born with physical and mental disorders after their mothers had rubella during pregnancy. If a child has a compromised immune system due to a viral infection that is passed on by the mother in-utero, encountered in the environment or injected via a vaccine, this is likely to make it very much harder for their immune systems to protect the integrity and function of the body. While this is clearly visible in relation to secondary infections that trigger some form of immune response, it is also significant, albeit less obvious, in relation to the regulation of the bowel’s microbiota. It seems plausible that autism is a product of a breakdown in our symbiotic relationships in the gut, caused by changes in the immune system once already impacted by a primary viral assault.

Administered in order to protect the body from infectious assault, vaccinations could be eroding the ability of the body to maintain the symbiotic

Buie, T. et al. (2010) Evaluation, diagnosis and treatment of gastrointestinal disorders in individuals with ASDs: A consensus report. Pediatrics, 125, S1-S18.

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relationships needed for good long-term health.

Certainly our son deteriorated slowly after he had the four viral vaccinations at once, and he completely regressed after his MMR booster shot in the spring of 2007 (when he was three and a half). In what may be the greatest irony of the twentieth century, vaccinations to protect us from the bugs outside our bodies may well be deleterious to the balance and management of the ones already inside us, thereby undermining our longer-term health and well-being.

If someone has a compromised immune system, likely due to exposure to pathogens and inherited or acquired weaknesses in the bowel microbiota, they could be vulnerable to the bowel flora disturbances that can ultimately lead to something as serious as autism. As such, we think that autism results from a process whereby the victim might already be vulnerable before their immune system suffers viral assault and then becomes unable to regulate the bowel flora in the gastrointestinal tract. When this happens, some of the bacteria may be able to penetrate the wall of the gut while the dysbiosis or imbalances of the bowel flora will also impact on the body’s nutritional status, further deepening the damage being done to both body and mind.

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As we outline in relation to our experience of treating Eric in the following chapter, the breakdown of complex carbohydrates, the absorption of B12 and iron are all disrupted in a vicious cycle of decline, further impacting on the core bio-chemical processes on which the body depends. Once the immune system is damaged, and the symbiosis with our microbiota is disrupted, it impacts on the body’s nutritional status and well-being such that it may be unable to recover again. We now believe that autism is the product of an immune dysfunction that cumulatively disrupts all the major bio-chemical systems that facilitate growth and cognition in the developing child. As we know only too well, the end result is a child who hardly eats, rarely excretes, barely sleeps, can’t concentrate, struggles to communicate and is in absolutely no shape to learn.

While we call this autism, we are still at the frontier of really understanding the processes behind the condition. As parents, we can’t afford to wait until we fully understand all the links in the chain and we think that we now know enough to make a dramatic difference to the health, well-being and mental capacity of our children. We might not be able to undo all the damage but there is a lot that can be achieved as we outline in more detail in the following chapter.

Chapter 3: What can be done?

At the time of writing this pamphlet – winter 2012/3 – we are four years into our journey with autism. At the start, we knew nothing about it, and even less about the processes that we outlined in the previous chapter. Like many parents in the autism universe, we were given the diagnosis and left to find things out for ourselves. While we knew that Eric was sick, we had no idea what to do. What’s more, we spent a fair bit of time trying to get help from the National Health Service before we realised that it had absolutely nothing to offer. There are few things more frustrating than getting an appointment to see an allergist, a gastroenterologist or neurologist, spending hours outside their office while your autistic child demolishes the toys and drives you and the other patients to despair with their wailing, only to be met by ignorance and what feels like a lack of concern.

Even before Eric was officially described as autistic, we saw a leading allergist at St Thomas’ Hospital who told us that the parents of children with behavioural problems often hide behind ‘so-called food allergies’ as an excuse for the problem. We had gone expecting the specialist to recognise the problem Eric had with the digestion of milk and give us some explanation for his eczema, only to find that our parenting skills were in question. This doctor organised a skin test whereby different substances were applied to Eric’s arm with a little prick in the centre of each to see if the body responded, but Eric’s immune system made no response. He was not instantly sensitive to any of the common substances applied to his arm. In his letter to our GP, the consultant reported that Eric did not have “the type of profile of a child whose eczema is sensitive to food.”

When we later found out that Eric had autism, and were reading parents’ stories about the particular significance of wheat and dairy for the health of their children, we decided to write this consultant a letter.

As we put it, we were concerned that there would be “many other parents who notice the development of bowel problems and reactions to particular foods

affecting their child’s well-being, skin and behaviour well before realising that they are dealing with autism. They may present at your clinic … Children like Eric need intensive analysis of their digestive and immunological systems to explore why they react to particular foods … Eric now has more eczema than ever and he regularly erupts in skin rashes with no obvious cause. We feel that he is in need of just the immunological panel tests and exploration of other metabolic function that might have been triggered by our visit to you.” He wrote back saying that he was “aware of the rather controversial association between delayed food allergies, GI [gastro-intestinal] problems, and behavioural problems” but he was not convinced there was sufficient evidence for making this case.

Remarkably, our experiences with two teams of gastroenterologists were no better than this. We took Eric to a paediatric gastroenterology clinic at the Chelsea and Westminster Hospital in February 2008 and were initially very excited to be offered an X-ray.

Eric had to swallow some tiny plastic markers four days before the X-ray was taken. The resulting picture showed these fragments to be distributed throughout his gut, which was swollen with faeces from his ribs to his rectum. The doctor confirmed constipation and mega-rectum, and then prescribed yet more laxatives.

Over several visits to this clinic, and encounters with several specialists (because you rarely see the same person twice), no one explained why a four-year old child could be so chronically constipated that nothing came out of his bowel, and no further tests were performed. When we reported that the laxatives weren’t working and we had started doing nightly enemas to get the bowel moving, we were advised that when Eric got to an age when this would no longer be feasible, it would be possible to do a small operation to add a tap under the rib cage to flush the gut from the top rather than go in at the bottom.

Incredibly, the only potential treatment was to inject botox into the bowel muscle to help it relax or to remove a part of the bowel. Eric was under-weight, 11

he wasn’t eating, sleeping or defecating, he was suffering from eczema and neurological problems, and the doctors seemed barely concerned. They treated it as completely normal. To this day, we find this extraordinary. What’s more, our own experience of treating Eric, and the success we have had in getting his bowel to work, in eradicating his eczema, in helping him to grow, and most recently, in seeing him learn, could be the basis of new treatments, and yet us parents are generally patronised or blithely ignored.

Over the past four years we have moved away from the darkest part of the tunnel of autism. Through reading and hearing about other people’s ideas and experiences, and taking our own small steps into different treatment possibilities, Eric is now healthier and happier than he has been for years. At our last parents’ meeting at his mainstream school, Eric’s teacher and his two teaching assistants were thrilled to report that Eric is now starting to write, that he is moving on with his reading and counting (which is still at pre-school level but had been static for years), and perhaps most importantly, that he has been playing with his classmates. While Eric is years behind his peers, and regressed and/or failed to develop during the years between his second and his eighth birthdays (over two-thirds of his lifetime), he is now starting to learn. This means that his brain is not permanently damaged and it gives us great hope for the future.

Treatment phase one: Getting the bowel to budge Since we started this journey we have had four different phases of treatment. In the first phase (early 2008-late 2009) we tried to get Eric’s bowel moving and given the failure of laxatives, we decided to try using enemas. The results were amazing and we saw an immediate improvement in Eric’s well-being.

His distended stomach started to shrink, he became more interested in food and he stopped crying and tantruming as much as he had. Most importantly, we were relieving him of the impacted faecal matter that had been stuck inside him for months. Over the weeks, and despite our expectations, this nightly ritual revealed that Eric’s poo was remarkably soft.

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While we expected to find his bowel full of the hard lumps that he had occasionally managed to produce in the past – what we called his rabbit poos – we found that his stool was soft but it still wouldn’t come out on its own.

At the same time, we discovered the work of the acclaimed Australian gastroenterologist, Professor Tom Borody, who argues that soft-stool constipation is common in people with bacterial change in their gut. Borody has successfully treated patients using antibiotics and probiotics to rebalance their bowel and this chimes with the experience of other doctors in the USA and more recently, in France. The biochemist William Shaw has shown that children like Eric tend to have high levels of a compound called propionic acid in their urine and that this is produced by some species of clostridia that live in the gut. Armed with this knowledge, doctors in the USA have been treating the clostridia with antibiotics such as flagyl and vancomycin, while also advocating probiotics to repopulate the ecosystem found in the gut. When treated this way, the levels of propionic acid fall while the presence of lactobacillus increases.

At the same time, many children experience a subsidence in their autistic symptoms, and in a few cases, they have lost their diagnosis altogether.

Mirroring this experience, when scientists have injected rats with significant amounts of propionic acid they display autistic symptoms: backwardwalking, paw-padding, wet-dog shakes and become socially isolated, hyperactive and hyper-reactive. Once the acid wears off, however, the rats return to their normal sociable rat-like state, showing no signs of lasting effect.

Treatment phase two: Antibiotics and change in the bowel After reading about this work and getting increasingly frustrated that nightly enemas were not triggering the self-generated bowel mobility that we had expected, we started the second phase of Eric’s treatment (late 2009-late 2010). We decided to test Eric’s stool to measure his cultured bowel flora (via a comprehensive stool analysis) and to analyse his

urine to identify any propionic acid (via a metabolic analysis test). His stool and urine were Fedexed to the USA and a few weeks later, we knew the worst: Eric had very high levels of propionic acid (well above the reference range) and no sign of any lactobacillus growing in the stool that was cultured. Armed with these results, we were able to find a private doctor who was willing to take these test results seriously and he advised using a very low dose of an antibiotic to treat Eric’s bowel.

Just six days after starting on antibiotics, Eric sat on the toilet and did a poo as if it was the most natural thing in the world. We were over the moon. We had waited more than a year for this moment. We had almost stopped believing that Eric would ever be able to poo on his own. In addition, he started to change. Before, he had been constantly running round in circles, flapping and clapping, making noises and barely registering anything around him. After the antibiotic, he sat down at the table and focused on his food. His sleeping, eating and communication all started to improve and he was a much calmer and happier child. A big cloud was lifted from over our heads. We could think about going away on holiday without having to manage an enema every night and we had a child who was no longer wasting away or running us ragged all night.

During that time, we hoped and prayed that the antibiotic treatment would trigger some permanent change in the bowel. Given that the bowel was working with treatment, we thought that this might mean it could work without it in future. Yet every time we stopped using the antibiotics, the constipation and behavioural problems returned. Disappointed, we had to look again at what we could do – not least because we knew that antibiotics could never solve the problem long-term.

Treatment phase three: Getting rid of the lead Soon after the autism diagnosis, we had read about the therapies that some parents were using to treat their children for heavy metal toxicity. In late 2010, we decided to explore whether this might be an issue

for us. We sent some of Eric’s hair away for analysis in America and got the results just a few weeks later: Eric had levels of antimony and lead that were off the scale. A normal level of lead – if such a thing exists – should be something less than 0.7 ug/gram and Eric’s measured 4.960. (and the test results are included at the end of this pamphlet). We had had our home water supply checked as soon as we knew Eric had autism and the water board had found that the levels of lead were too high. While we’d changed the pipes in early 2008, that was two years too late. At a crucial stage of his life, Eric had been drinking, bathing and eating food cooked in water that was full of lead and two years later, the hair test showed this exposure.

We were back to blaming ourselves. Maybe Eric had lead poisoning as a result of our moving to an old house with lead water pipes and old lead paint.

If you look up the symptoms of lead poisoning on Wikipedia you certainly find that it describes the symptoms of autism. When we last looked it told us that: “The classic signs and symptoms in children are loss of appetite, abdominal pain, vomiting, weight loss, constipation, anaemia, kidney failure, irritability, lethargy, learning disabilities, and behavioural problems. Slow development of normal childhood behaviours, such as talking and use of words, and permanent mental retardation are both commonly seen.”

We had to do something and in December 2010 we completed two urine tests which recorded the presence of toxic metals in Eric’s urine before and after using a small dose of a chelating agent called Dimercaptosuccinic acid (DMSA). This agent binds to heavy metals in the body, allowing them to be excreted via the urine. Before using the DMSA, Eric’s urine metals test again showed elevated levels of lead (at 7.1 ug/g creatinine when the reference range peaked at 5) but after taking the DMSA, he was found to have as much as 22 ug/g creatinine of lead in his urine (more than four times the top of the reference level). All other metals, including antimony and mercury, were within the reference ranges used in these tests.

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Thus in the third phase of treatment (late 2010-late 2011) we worked with a private doctor to use a very low dose of DMSA to remove some of this lead over a number of months. Every weekend we gave Eric a small amount of the DMSA every four hours during the day, giving him a rest during the week. We retested his urine after a few months (in April 2011), again in September 2011, and again in February 2012. Over this time the lead excreted after DMSA was as high as 42 ug/g creatinine (more than 8 times the reference range limit), coming down to 16 ug/g in September 2011 and 9.4 ug/g in February 2012.

Remarkably, as soon as we started getting rid of the lead, we stopped having to use the antibiotic and Eric was happily emptying his bowel every day. For the first time in years, he also started to sleep all the way through the night. The fact that the DMSA seemed to work, that the lead levels were falling, and Eric was getting better, meant that we felt confident enough to stop using the DMSA. Yet just when we thought things were going to keep getting better, we had another bleak mid-winter between 2011 and 2012. For no obvious reason, Eric started to lose his ability to communicate and started talking in an odd and unintelligible way. He re-started the toe-walking that he had done years earlier and no longer focused on the computer or books.

To our dismay, Eric became afflicted with terrible constipation and it looked like we were going back to where we had started, with a very sick child.

Treatment phase four: A more holistic approach From early 2012, and faced with another regression, we had to rethink. We reflected on everything that had gone before and tried to develop a more comprehensive approach. In the past, each phase of treatment was helpful in tackling certain aspects of the condition: controlling the bowel flora through enemas, antibiotics and/or diet and probiotics; and helping the body to get rid of heavy metals. But we were doing these things separately and not together.

While one thing was helping, other systems were not being supported. In addition, we had added basic support like vitamins and cod liver oil, and always 14

used probiotics, but we were not very systematic about it. We knew that nutritional support was important, but we were rather ad-hoc. In hindsight, we really under-estimated its importance. We assumed that because Eric was eating a good diet, he had to be getting a good balance of nutrition out of that food. This was a very serious mistake.

In our fourth and current phase of treatment (early 2012 to present) we have focused much more on the nutritional aspects of treatment. Given that the human body is a composite of tiny cells that each depend upon a complex of chemicals – and biochemical processes – to function, it is absolutely essential that the body ingests, produces and processes the chemicals it requires. We have done some testing that looks at Eric’s biochemical status – measuring some of the chemical building blocks that the body needs to function – such as amino acids – as well as the products of some of the body’s essential processes such as digestion, the cellular energy (or Krebs) cycle and detoxification. As outlined below, these test results have identified major imbalances in Eric’s biochemistry and when we have added nutritional supplements, the results have been amazing. In the early stage of this phase of treatment, we also went back to look at his gut and we have been using some herbs that act as natural antimicrobials and gone on to a much stricter diet that avoids the ingestion of all complex carbohydrates. In combination, the herbs, diet and nutritional support have made a dramatic difference. Eric’s overall health and mental capacity are now much improved.

To try to reduce the impact of bowel dysbiosis, we have used the herbal combination recommended by the American biochemist Dr Amy Yasko. This comprises a daily treatment of a few drops of oregon grape, myrrh, golden seal, oregano oil and uva ursi.

When we first used these in early 2012, they produced a terrifying and yet miraculous effect. Within a few hours, Eric started screaming and trantruming, but he also started to regain his language. Within a few days he was much calmer, started to go to the toilet again and his language came back. For us, this was

like a light bulb going on and off, demanding we sit up and take notice. Given that these simple herbs were designed to target the bowel flora, we now felt more confident that the bowel flora really were central to his condition. We had been off down the toxic metal track and important though it was, we needed to get back to the bowel. Since then we have also tried other herbs that are historically associated with treating the gut, such as black walnut and artemisia.

This experience also prompted us to go back and revisit Eric’s diet as a natural way to try to reconfigure the flora at home in his gut. When Eric was first diagnosed we had spoken to the nutritionist Natasha Campbell McBride and read her book Gut and Psychology Syndrome. Campbell McBride makes the case for the Specific Carbohydrate Diet (SCD) to restore the balance of flora in the intestinal tract.

This diet was developed to treat coeliac and crohn’s diseases and involves removing all complex sugars from the diet for a number of years and allowing only fruit and honey (simple sugars) as sweeteners. The SCD means stopping the consumption of all grains and starches (wheat, oats, corn, rice, soya and potato) and focusing on meat, fish, eggs, vegetables, nuts and fruit. While you can eat home-made yoghurt and cheese once the bowel has started to heal, we have never managed to get Eric to tolerate dairy products, and his diet has had to remain completely free of these foods.

We know that this diet sounds like mission impossible. It means that you remove the staple foods of the modern Western diet and Eric – like the rest of us – used to love his Rice Krispies, Frosties, crisps, rice cakes, pasta and toast. In fact, given half a chance, that is all Eric ever wanted to eat! He would stand at the pantry door for much of the day, asking and crying for the food we were required to drop and we thought it would be impossible to do it for more than a day or two at the most.

We were prepared for the return of screaming and trauma and began the SCD diet over the Easter holiday in 2012. We hid the forbidden boxes and packets in

the attic and went cold turkey on food. In the event, however, it was remarkably – and unbelievably – easy.

Within a few days, Eric was tucking into large bowls of organic meat and vegetable stew as though it was the most normal thing in the world. It took just a day or two for him to lose his cravings for complex carbohydrates or starchy foods.

For the past twelve months, Eric has been eating a diet fit for a king. He has ground almond and egg pancakes, organic bacon, tomato, and a fruit and vegetable juice for breakfast. He eats salad, ham, chicken or tuna with a banana for lunch at his school.

In the evening, he tucks into meat, vegetables, fruit and nuts. For treats we give him simple biscuits and muffins made from ground nuts or coconut with fruit and honey to sweeten them, or fruit on its own. Even though we cannot eat out and have to take a camping stove and a pile of organic meat and vegetables with us whenever we go away for more than a day, this diet is worth it. Eric’s improved health and well-being are the reward.

So, in this fourth and current phase of his treatment, Eric has had daily bowel movements (something that we once thought would be impossible); he eats more – and more healthily – than he ever has done before; he sleeps for 10 hours a night without interruption and is able to drop off on his own when put in to bed; and most amazingly, he is making progress in communication and learning at school. In what seems like relatively simple steps, which don’t require mainstream medicine, this formula has had dramatic effects. But as well as the gut herbs and diet, the additional ingredient has been a more careful approach to nutrition.

In April 2102 we sent off another vial of urine to the labs in America to look at Eric’s amino acids – something that we hadn’t done since 2008. These results brought us down to earth with a bump.

We found that most of these essential chemical compounds were incredibly low. Eric’s levels of methionine, cysteine, aspartate, glutamine, cysteine and glycine (6 of the 20 amino acids required in 15

the body) were at or below the bottom of the reference range. In addition, the levels of serine and cystathionine, which are important precursors to glutathione, the molecule that is critical for detoxification, were also well below the reference range. In contrast, the levels of 1-Methylhistadine and 3-Methylhistadine were way off the scale at the top indicating muscle depletion in the body’s search for nutrition. The analysis provided by the laboratory put many of these findings down to a low dietary intake and/or poor assimilation of folic acid and vitamin B12, and the absence of sufficient vitamin B6 and magnesium. We had been giving Eric vitamin B12 orally for years – since first testing his amino acids in 2008 – but it was clear it had not been absorbed.

The test results exposed the extent to which Eric’s basic biochemical pathways were not functioning at an adequate level. Eric’s body and brain were being starved of the essential nutrition critical to the body’s energy, neurology and detoxification. Most obviously, Eric was going to have very limited levels of glutathione in his system, helping to explain why his lead was so high. The test was a sobering reminder of the importance of getting this right.

Since we got those test results in April 2012, we have been using methyl-B12 and added the core

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vitamins and minerals that his body was missing.

In August 2012, we tested again (and both sets of results are reproduced at the end of this pamphlet).

It was found that Eric now had normal levels of Methionine, Cysteine and 1-Methylhistidine in his urine. The change was dramatic. Whereas the April test had put his level of Methionine well under the bottom of the reference range, the August figure showed it to be right in the middle of the range. His cysteine level had done the same. Eric’s biochemistry was changing, and this was reflected in his better functioning too. This matches the findings of researchers lead by Professor Jill James in the USA. She and her colleagues found that autistic children had higher levels of oxidative stress than controls, but when treated with folinic acid, trimethyl-glycine (TMG) and subcutaneous injections of methyl-B12, their glutathione levels returned to normal.

Our experience has inspired us to carry on trying to improve Eric’s nutritional status and on that basis, his biochemical functions and health. It has proved to us that autism has an underlying physiological explanation. We now know that improving the function of the body can help to bring the autistic brain back to life.

Chapter 4: What’s next?

Over the past four years there have been times when autism felt like bereavement. The child you longed for has been born and then mysteriously regressed into a world of its own. The professionals tell you that this is ‘just one of those things’ and your child will simply be ‘different’. Yet living with a child who hardly eats, sleeps or poos, is one of the hardest things you could do. The acute anxiety and long-term sleepdeprivation have taken us both to the brink of nervous breakdowns, not to mention divorce. We have had some really dark times and felt terrible rage at the incomprehension, ignorance and apparent lack of care displayed by the so-called professionals. Autism can be a very lonely experience. As a parent you become too exhausted for a social life and even if you do, people look askance as your child screams incessantly, destroys the toys and fails to make any friends. At best you get sympathy and at worse, you’re condemned.

The only way out seems to be to stay hidden at home.

to find people who do want to help. More recently we have been blessed to find a new school where Eric is truly supported. The contrast is extraordinary.

Eric’s former teaching assistant – due to be sacked at the old school – was employed by the new school and would not be moved without consulting us. The teachers are open to learning about autism and they are always willing to try new ideas and techniques for getting Eric to learn. Going to school is now a much more positive experience. We have also been able to increase the more specialist Applied Behavioural Analysis (ABA) support that he’s having at home.

We have worked with a consultant and tutors to develop an evolving programme that breaks down tasks into their smallest parts and reinforces learning

Although we have not discussed it here, we have had difficult battles to get a suitable statement to support Eric in school. We have had some remarkably confrontational meetings with the Head Teacher and Special Needs Coordinator at Eric’s first primary school. They clearly didn’t want us there but were unwilling to say so. The Head Teacher used the money provided in Eric’s statement to employ teaching assistants who could be moved or sacked without consulting us. Eric would get to know a lovely new assistant only to find that he – and we – had to build a new relationship with a new person the following year. It was dreadful going back to school after the long summer holiday to find that Eric’s former assistant had gone and we had to start from scratch with a new one and a new class teacher as well. The school were trying to manage us rather than focusing on the needs of our son.

So as well as the pain, autism has brought us great rewards. Not only do we have a loving and much treasured son, who brings us great joy, but we have met a new group of positive people. More than that, however, autism has also taught us to re-learn and reexamine many of the most important things about life.

Learning to walk away from services that don’t provide anything resembling adequate provision in both education and health has been one of the greatest lessons for us. What’s more, it’s allowed us

by praise and incentives. The team bring a wind of positive energy into the house and have been getting him to work on his reading, writing, numbers and communication skills. They bring out the best in us all.

As we outlined in chapter 2, autism has made us rethink what it means to be human. We can’t neglect the flora that live in our bowels; they are essential to our immunology and biochemistry, and on that basis, they are part of what we all refer to as ‘human’. We are a product of our symbiosis with the microbiota that lives in our gut and we depend upon those relationships. The twentieth-century model of health and medicine that tries to contain and kill potential pathogens is clearly outdated as it fails to recognise the extent to which we are dependent upon them. It is also outdated in splitting up the body into its constituent parts. Autism shows that we need to treat the body as a whole, including recognition of the symbionts that live in our gut. It is also essential to look at the underlying biochemical functions that might explain 17

particular problems we have. The range of difficulties facing a child with autism are considerable and, as we have described, these can include the gut, the immune, neurological and detoxification systems. Contemporary medicine might, at best, see a series of problems, rather than the bigger picture that explains all the parts. Bogged down in the different trees of their specialisms, doctors can be unaware of the connections that make up the wood as a whole.

In addition, doctors and many researchers are often overwhelmed by the drive to find a drug-based remedy for each separate disease. Looking at the underlying systems of the body is rarely included in their approach. The future must be to see if a disease or dysfunction can be treated through nutritional interventions based on biochemical analysis in a more functional approach to health that seeks to help the body to heal itself.

Our experience with autism exposes the need for a new paradigm of health and disease. In a country like the UK, people are living in better conditions than ever before and we rarely fall victim to acute

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infections as we did in the past, but at the same time, we are plagued by chronic disease. Every classroom has several children who have asthma, eczema and allergies – not to mention the more serious problems of ADHD, dyslexia, dyspraxia and autism. While these conditions are treated as separate problems, unrelated to each other, to us, they signal the underlying pressure on the immune system. The increasing incidence of bowel problems like crohn’s and coeliac diseases, auto-immune conditions like arthritis, diabetes and lupus, and cancers, are all signs of a similar kind of dysfunction in the immune-biochemical balance that we have described for autism.

Mainstream debate has yet to recognise autism as being a matter of physical health. This has forced parents like us to draw upon our own communities to try and understand the condition and to share ideas about what we can do. DIY health has forced us to recognise the importance of functional medicine: helping our bodies to heal themselves. Our hope is that the parents of children with autism will take heart from our story. We know that we can nurture our children to much better health.

Key research resources Ashwood, P. Krakowiak, P. Hertz-Picciotto, I. Hansen, R. Pessah, I. and van de Water, J. (2011) Elevated plasma cytokines in autism spectrum disorders provide evidence of immune dysfunction and are associated with impaired behavioural outcome.

Brain Behaviour and Immunology, 25, 1, 4045.

Buie, T. et al. (2010) Evaluation, diagnosis and treatment of gastrointestinal disorders in individuals with ASDs: A consensus report.

Pediatrics, 125, S1-S18.

Finegold, S.M. et al (2002) Gastrointestinal microflora studies in late-onset autism. Clinical Infectious Diseases, 35 (Supplement 1), S6-S16.

Finegold, S.M. et al (2011) Desulfovibrio species are potentially important in regressive autism. Medical Hypotheses, 77, 2, 270-4.

James, S.L. et al (2004) Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism. American Journal of Clinical Nutrition, 80, 6, 1611-7.

Maynard, C.L. Elson, C.O. Hatton, R.D. and Weaver, C.T. (2012) Reciprocal interactions of the intestinal microbiota and immune system. Nature, 489, 13 September, 231-241.

Margulis, L. and Sagan, D. (2002) Acquiring genomes: A theory of the origin of species. New York: Basic Books.

The Economist (2012) The Human microbiome: me, myself, us. 18 August, available from: http://www.economist.com/node/21560523 (last accessed on 20.08.12)

Vargas, D.L. Nascimbene, C. Krishnan, C. Zimmerman, A.W. and Pardo, C.A. (2005) Neuroglial activation and neuroinflammation in the brain of patients with autism. Annals of Neurology, 57, 1, 67-81.

Rouse, B.T. and Horohov, D.W. (1986) Immunosuppression in viral infections. Reviews of Infectious Diseases, 8, 6, 850-873.

Slifka, M.K. Homaa, D. Tishon, A. Pagarigan, R. and Oldstone, M.B.A. (2003) Measles virus infection results in suppression of both innate and adaptive immune responses to secondary bacterial infection. The Journal of Clinical Investigation, 111, 6, 805-810.

Treating Autism and Autism Treatment Trust (2013) Medical Co-morbidities in Autism Spectrum Disorders: A primer for health care professionals and policy makers. Available from internet, address given below.

Williams B.L. Hornig, M. Parekh, T. and Lipkin, W.I. (2012) Application of novel PCR-based methods for detection, quantitation, and phylogenetic characterization of Sutterella species in intestinal biopsy samples from children with autism and gastrointestinal disturbances. mBio, 3, 1, e00261-11.

Yap, I.K.S. Angley, M. Veselkov, K.A. Holmes, E. Lindon, J.C. and Nicholson, J.K. (2010) Urinary metabolic phenotyping differentiates children with autism from their unaffected siblings and age-matched controls. Journal of Proteome Research, 9, 29963004.

Vaishnava, S. Yamamoto, M. Sverson, K.M. Ruhn, K.A. Yu, X. Kroen, O. Ley, R. Wakeland, E.K. and Hooper, L.V. (2011) The anti-bacterial lectin RegIIIy promotes the spatial segregation of microbiota and host in the intestine. Science, 334, 14 October, 255-258.

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Useful organisations and websites Treating Autism is a parent-led charity devoted to finding and promoting biomedical treatments for children with autism. The organisation runs local groups for parents and regular conferences to bring parents, practitioners and researchers together. They have an information-packed website: http://www.treatingautism.co.uk/ Equivalent organisations based in the USA are: Talk about Curing Autism: http://www.tacanow.org/about-taca/ Generation Rescue: http://www.generationrescue.org/ In relation to research into the origins and treatment for the condition, the Autism Research Institute was set up by Dr Bernard Rimland in 1967 in California and it has been devoted to research and advocacy ever since, http://www.autism.com/ More information about the Specific Carbohydrate Diet can be found here: http://gapsdiet.com/Home_Page.html As it says on this webpage, Natasha Campbell McBride developed what she has called ‘The Gut and Psychology Syndrome Diet’ on the foundation of the Specific Carbohydrate Diet (SCD) created by Dr. Sidney Valentine Haas to heal digestive disorders.

SCD gained great popularity after a mother, Elaine Gottschall, healed her own child and became an advocate for SCD. Elaine Gottschall wrote the popular book Breaking the Vicious Cycle. Intestinal Health Through Diet but Campbell McBride’s book, Gut and Pyschology Syndrome, is a very good introduction for the parents of children with autism.

More information about the use of MethylB12 for children with autism is available from one of the earliest exponents of this treatment, a doctor called James Neubrander based in New Jersey USA: http://www.drneubrander.com/index.php 20

The Small Intestine Bacterial Overgrowth website established by one-time IBD-sufferer, Dr Allison Siebecker (from Portland, Oregon), has a wealth of information about this problem and covers the use of natural herbs to treat it: http://www.siboinfo.com/ We have had excellent support to deliver a home programme – with additional support in school using Applied Behavioural Analysis (ABA) from the parentled charity, Peach: http://www.peach.org.uk/

Eric’s test results 1 Elemental analysis of hair sample Date: October 2010 2 Urine toxic metals (before provocation with DMSA) (1) Date: November 2010 3 Urine toxic metals (post provocation) (2) Date: November 2010 4 Urine toxic metals (post provocation) (3) Date: April 2011 5 Urine toxic metals (post provocation) (4) Date: January 2012 Patient: ERIC Breakspear Hospital Order Number: D0130659 6 Urine amino acids Date: March 2012 CHAPMAN WILLS Completed: October 18, 2010 Jean Monro 7 Metabolic analysis acids Date: August 2012 DOB: October 13, 2003 and amino Hertfordshire House Received: October 13, 2010 Sex: M Collected: October 09, 2010 1 Elemental analysis of hair Route sample Date: October 2010 MRN: 0001291380 Number: A0124680

Aluminum

4.3

Antimony

0.065

Arsenic Barium

0.076 0.05

Bismuth

0.039

Cadmium

0.015

Gadolinium

<dl

Lead

4.960

Mercury

0.32

Wood Lane Hemel Hempstead, Herts HP2 4FD Great Britain and Northern Ireland

<= 17.3

Calcium

<= 0.016

Chromium

<= 0.080

Cobalt

0.004

<= 1.70

Copper

9

<= 0.178

Iron

<= 0.022

Magnesium

<= 0.0005

Manganese

0.08

0.04-1.93

<= 0.700

Molybdenum

0.03

0.01-1.24

<= 1.32

Phosphorous

Nickel

0.06

<= 0.55

Selenium

Rhodium

<dl

<= 0.0005

Sodium

Rubidium

<dl

<= 0.040

Strontium

Thallium

<dl

<= 0.0004

Sulfur

<= 0.149

Vanadium

<= 0.0057

Zinc

Tin

0.090

Uranium

0.0023

8

5-29 0

20 21 22 23 24 25 28

66

192-1,588 0.19

0.01-1.58 0.001-0.129 8-136

8.9 8

5.2-24.4 11-122

135 0.50

104-206 0.58-1.13

<dl

14-426 0.05

0.01-4.40

53,763 0.038 166

41,781-60,894 0.003-0.108 119-245

Lithium

<dl

<= 0.302

Potassium

<dl

<= 174

1-9

© Genova Diagnostics · A. L. Peace-Brewer, PhD, D(ABMLI), Lab Director · CLIA Lic. #34D0655571 · Medicare Lic. #34-8475

21

URINE TOXIC METALS 2 Urine toxic metals

LAB #: U101201-2164-1 PATIENT: Eric Trevelyan Chapmanwills (before with DMSA) (1) Date: ID:provocation CHAPMANWILLS-E-00001 SEX: Male AGE: 7

CLIENT#: 24146

November 2010

POTENTIALLY TOXIC METALS

METALS

Aluminum Antimony Arsenic Barium Beryllium Bismuth Cadmium Cesium Gadolinium Lead Mercury Nickel Palladium Platinum Tellurium Thallium Thorium Tin Titanium Tungsten Uranium

REFERENCE RANGE

RESULT

∝g/g creat

1.7 0.3

< <

60

3.1

<

117

< dl

<

< dl

<

0.6

< dl

<

11

<

0.5

< dl

<

0.4

7.1

<

0.6

<

7

20 12 5 5

3.9

<

< dl

<

0.3

< dl

<

0.3

0.1

<

< dl

<

15 1

0.8

< dl

<

0.05

0.5

<

15

N/A

<

0.1

<

< dl

<

VERY ELEVATED

ELEVATED

0.5

<

32

WITHIN REFERENCE RANGE

15 0.6

0.04

URINE CREATININE RESULT mg/dL

Creatinine

82.3

REFERENCE RANGE

25-

2SD LOW 1SD LOW

MEAN

1SD HIGH

2SD HIGH

180 SPECIMEN DATA

Comments: Date Collected: Date Received: Date Completed: Method:

11/28/2010 12/1/2010 12/2/2010 ICP-MS

pH upon receipt: Acceptable <dl: less than detection limit Provoking Agent:

Collection Period: Random Volume: 40 ml Provocation: PRE PROVOCATIVE

Toxic metals are reported as ∝g/g creatinine to account for urine dilution variations. Reference ranges are representative of a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metals have been established.

V12 0001395

22

©DOCTOR'S DATA, INC. ! ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 ! CLIA ID NO: 14D0646470 ! MEDICARE PROVIDER NO: 148453

URINE TOXIC METALS 3 Urine toxic metals (post

LAB #: U101201-2167-1 PATIENT: Eric Trevelyan Chapman Wills ID: CHAPMAN WILL-E-00001 provocation) (2) Date: November 2010 SEX: Male AGE: 7

CLIENT#: 24146

POTENTIALLY TOXIC METALS

METALS

Aluminum Antimony Arsenic Barium Beryllium Bismuth Cadmium Cesium Gadolinium Lead Mercury Nickel Palladium Platinum Tellurium Thallium Thorium Tin Titanium Tungsten Uranium

REFERENCE RANGE

RESULT

∝g/g creat

< dl 0.1

< <

0.5

7

3

<

117

< dl

<

0.6

< dl

<

0.2

<

0.5

9.7

<

< dl

<

0.4

22

<

2.3

<

20 12 5 5

2.6

<

< dl

<

0.3

< dl

<

0.3

0.3

<

< dl

<

15 1

0.8

< dl

<

0.05

1.5

<

15

N/A

<

0.04

<

< dl

<

VERY ELEVATED

ELEVATED

60

<

24

WITHIN REFERENCE RANGE

15 0.6

0.04

URINE CREATININE RESULT mg/dL

Creatinine

105

REFERENCE RANGE

25-

2SD LOW 1SD LOW

MEAN

1SD HIGH

2SD HIGH

180 SPECIMEN DATA

Comments: Date Collected: Date Received: Date Completed: Method:

11/29/2010 12/1/2010 12/2/2010 ICP-MS

pH upon receipt: Acceptable <dl: less than detection limit Provoking Agent: DMSA

Collection Period: Random Volume: 40 ml Provocation: POST PROVOCATIVE

Toxic metals are reported as ∝g/g creatinine to account for urine dilution variations. Reference ranges are representative of a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metals have been established.

V12 0001395

©DOCTOR'S DATA, INC. ! ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 ! CLIA ID NO: 14D0646470 ! MEDICARE PROVIDER NO: 148453

23

URINE TOXIC METALS LAB #: U110503-2283-1 PATIENT: Eric Trevelyan Chapman Wills ID: CHAPMAN WILL-E-00001 4 Urine toxic metals (post provocation) (3) Date: April 2011 SEX: Male AGE: 7

CLIENT#: 24146 DOCTOR: Jean Monro, MD Breakspear Hospital Hertfordshire House Hemel Hempstead, HP2 4FD ENGLAND

POTENTIALLY TOXIC METALS RESULT METALS

Aluminum Antimony Arsenic Barium Beryllium Bismuth Cadmium Cesium Gadolinium Lead Mercury Nickel Palladium Platinum Tellurium Thallium Thorium Tin Titanium Tungsten Uranium

REFERENCE RANGE

µg/g creat

220

<

60

0.5

<

0.5

230

<

117

11

<

7

< dl

<

1

< dl

<

20

0.3

<

0.5

9

<

12

< dl

<

0.4

42

<

5

2

<

5

13

<

15

< dl

<

0.3

< dl

<

1

< dl

<

0.8

0.4

<

0.8

< dl

<

0.05

1.6

<

15

N/A

<

15

0.2

<

0.6

0.08

<

0.04

WITHIN REFERENCE RANGE

ELEVATED

VERY ELEVATED

URINE CREATININE RESULT mg/dL

Creatinine

REFERENCE RANGE

131

25-

2SD LOW 1SD LOW

MEAN

1SD HIGH

2SD HIGH

180 SPECIMEN DATA

Results checked.

Comments: 4/23/2011 Date Collected: 5/3/2011 Date Received: 5/7/2011 Date Completed: ICP-MS Method:

pH upon receipt: Acceptable less than detection limit <dl: Provoking Agent: DMSA

Collection Period: Random Volume: POST PROVOCATIVE Provocation:

Toxic metals are reported as µg/g creatinine to account for urine dilution variations. Reference ranges are representative of a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metals V12 have been established. ©DOCTOR’S DATA, INC.  ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420  CLIA ID NO: 14D0646470  MEDICARE PROVIDER NO: 148453 0001395

24

CLIENT #: 24146 DOCTOR: Jean Monro, MD Breakspear Hospital Hertfordshire House Hemel Hempstead, HP2 4FD ENGLAND

LAB #: U120201-2363-1 PATIENT: Eric Trevelyan Chapman Wills ID: CHAPMAN WILL-E-00001 SEX: Male AGE: 8

5 Urine toxic metals (post provocation) (4) Date: January 2012



TOXIC METALS

RESULT µg/g creat

REFERENCE INTERVAL

Aluminum

(Al)

5.3

<

60

Antimony

(Sb)

< dl

<

0.5 117 7

Arsenic

(As)

27

<

Barium

(Ba)

6.6

<

Beryllium

(Be)

< dl

<

1

Bismuth

(Bi)

< dl

<

20

Cadmium

(Cd)

0.4

<

0.5 12

Cesium

(Cs)

12

<

Gadolinium

(Gd)

< dl

<

0.4 5 5

Lead

(Pb)

9.4

<

Mercury

(Hg)

1.6

<

Nickel

(Ni)

9.2

<

15

Palladium

(Pd)

< dl

<

0.3

Platinum

(Pt)

< dl

<

1 0.8

Tellurium

(Te)

< dl

<

Thallium

(Tl)

0.3

<

0.8 0.05 15

Thorium

(Th)

< dl

<

Tin

(Sn)

0.9

<

Tungsten

(W)

0.4

<

0.6

< dl

<

0.04

Uranium

(U)

WITHIN REFERENCE

OUTSIDE REFERENCE

URINE CREATININE

RESULT mg/dL

Creatinine

46.3

REFERENCE INTERVAL

25-

-2SD

-1SD

MEAN

+1SD +2SD

180

SPECIMEN DATA

Comments: Date Collected: 1/29/2012 Date Received: 2/1/2012 Date Completed: 2/2/2012 Method: ICP-MS

pH upon receipt: Acceptable less than detection limit <dl: Provoking Agent: DMSA Creatinine by Jaffe Method

Collection Period: timed: 9 hours Volume: Provocation: POST PROVOCATIVE

Results are creatinine corrected to account for urine dilution variations. Reference intervals and corresponding graphs are representative of a healthy population under non-provoked conditions. Chelation (provocation) agents can V13 increase urinary excretion of metals/elements. ©DOCTOR’S DATA, INC.  ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420  CLIA ID NO: 14D0646470  MEDICARE PROVIDER NO: 148453 0001523

25

CLIENT #: 24146 DOCTOR: Jean Monro, MD Breakspear Hospital Hertfordshire House Hemel Hempstead, HP2 4FD ENGLAND

LAB #: U120328-2269-1 PATIENT: Eric Trevelyan Chapman Wills ID: CHAPMAN WILL-E-00001 SEX: Male DOB: 10/13/2003

6 Urine amino acids Date: March 2012



SPECIMEN VALIDITY

RESULT per creatinine

Creatinine

68

Glutamine/Glutamate Ammonia Level

mg/dL

7.7

(NH4)

46400

µM/g

REFERENCE INTERVAL

25-

180

5-

160

PERCENTILE

2.5th

16th

50th

84th

97.5th

84th

97.5th

84th

97.5th

16000- 75000

Specimen Validity Index ESSENTIAL / CONDIIONALLY INDISPENSABLE AMINO ACIDS

RESULT µM/g creatinine

REFERENCE INTERVAL

5.4

12-

46

Lysine

100

55-

550

Threonine

110

80-

400

Leucine

44

20-

100

Isoleucine

11

8-

45

Valine

63

20-

94

Phenylalanine

59

40-

180

Tryptophan

80

Methionine

Taurine

750

Cysteine

20

Arginine

19

Histidine

810

35-

145

200-

1600

25-

93

12-

70

520-

2100

PERCENTILE

2.5th

16th

2.5th

16th

50th

NONESSENTIAL AMINO ACIDS

RESULT µM/g creatinine

REFERENCE INTERVAL

Alanine

200

170-

800

Aspartate

5.6

12-

33

Asparagine

61

60-

360

300-

1200

Glutamine

300

Glutamate

39

10-

80

Cystine

25

28-

91

Glycine

730

800-

3400

Tyrosine

100

60-

225

Serine

200

200-

880

Proline

4.8

2-

90

PERCENTILE

50th

©DOCTOR’S DATA, INC.  ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420  CLIA ID NO: 14D0646470  MEDICARE PROVIDER NO: 148453 0001676

26

PATIENT: Eric Trevelyan Chapman Wills DOCTOR: Jean Monro, MD LAB#: U120328-2269-1 PAGE: 3 DETOXIFICATION MARKERS

RESULT µM/g creatinine

Methionine

5.4

Cysteine

20

REFERENCE INTERVAL

12-

PERCENTILE

2.5th

16th

2.5th

16th

50th

84th

97.5th

84th

97.5th

46

25-

93 1600

Taurine

750

200-

Glutamine

300

300-

1200

Glycine

730

800-

3400

Aspartate

5.6

12-

33

NEUROLOGICAL MARKERS

RESULT µM/g creatinine

Ammonia

300-

1200

59

40-

180

Tyrosine

100

60-

225

Tryptophan

80

Glutamine

300

Phenylalanine

PERCENTILE

50th

16000- 75000

46400

(NH4)

REFERENCE INTERVAL

35-

145 1600 43

Taurine

750

200-

Cystathionine

6.4

10-

68th

2.2

Beta-alanine

95th

< 22

UREA CYCLE METABOLITES

RESULT per creatinine

REFERENCE INTERVAL

Arginine

19

µM/g

12-

70

Aspartate

5.6

µM/g

12-

33

Citrulline

1.3

µM/g

1-

47

5-

55

210-

750

Ornithine

10

µM/g

Urea

730

mM/g µM/g

300

µM/g

300-

1200

Asparagine

61

µM/g

60-

360

(NH4)

16th

50th

84th

97.5th

16000- 75000

46400

Glutamine

Ammonia

PERCENTILE

2.5th

68th

SPECIMEN DATA

Comments: Date Collected: 3/25/2012 Date Received: 3/28/2012 Date Completed: 4/3/2012

Collection Period: Random Volume:

Methodology: LC MS/MS NH4, Urea, Creatinine by Automated Chem Analyzer

v3

©DOCTOR’S DATA, INC.  ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420  CLIA ID NO: 14D0646470  MEDICARE PROVIDER NO: 148453 0001676

27

PATIENT: Eric Trevelyan Chapman Wills DOCTOR: Jean Monro, MD LAB#: U120328-2269-1 PAGE: 2 GASTROINTESTINAL MARKERS

RESULT µM/g creatinine

Ammonia Ethanolamine

(NH4)

46400 300

REFERENCE INTERVAL

PERCENTILE

2.5th

16th

50th

84th

97.5th

16000- 75000 150-

580

8-

100

80-

400

Alpha-Aminoadipitate

96

Threonine

110

Tryptophan

80

Taurine

750

Beta-alanine

2.2

< 22

Beta-aminoisobutyrate

90

< 470

Anserine

51

< 200

Carnosine

71

< 200

Gamma-aminobutyrate

1.5

< 50

Hydroxyproline

6.5

< 60

35-

145

200-

1600 68th

95th

MAGNESIUM DEPENDANT MARKERS

RESULT µM/g creatinine

REFERENCE INTERVAL

Citrulline

1.3

1-

47

Ethanolamine

300

150-

580

Phosphoethanolamine

73

46-

140 1.2

Phosphoserine

0.41

0.07-

Serine

200

200-

880

Taurine

750

200-

1600

Methionine Sulfoxide

2

PERCENTILE

2.5th

16th

50th

68th

84th

97.5th

95th

< 15

B6, B12, & FOLATE DEPENDANT MARKERS

RESULT µM/g creatinine

REFERENCE INTERVAL

200-

880

96

8-

100

Cysteine

20

25-

93

Cystathionine

6.4

10-

43

1-Methylhistidine

480

130-

430

3-Methylhistidine

1070

55-

900

Alpha-amino-N-butyrate

26

8-

65

Beta-aminoisobutyrate

90

< 470

Beta-alanine

2.2

< 22

Homocystine

0.029

< 10

Sarcosine

6

< 50

Serine

200

Alpha-aminoadipate

PERCENTILE

2.5th

16th

68th

50th

84th

95th

©DOCTOR’S DATA, INC.  ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420  CLIA ID NO: 14D0646470  MEDICARE PROVIDER NO: 148453 0001676

28

97.5th

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