My Son and his Autism GAPS journey

by Linda Paterson

My son was diagnosed with autism when he was three. I first identified the potential for my son’s condition at age two where his language had regressed and he stopped eating all my home made meals, self limiting himself to only a few food items. Soon after this came self harming where he would scratch his face, bite his arms and bang his head on the floor causing scratch marks on his cheeks, bite marks on his arms and hands and bruises to his forehead.

Although the first major signs of autism emerged just after the age of two where they continually and progressively got worse, I did identify some earlier problems at around the age of three and five months where I exhausted my own instinctive efforts and resorted to professional support from a baby whisperer due to his severe sleep problems.

I cringe when I recall how I became so subservient to the pressure of my sons paediatrician who abruptly advised of the significance in immunising our son with an additional vaccine at 6 weeks followed by two boosters at 10 and 14 weeks for the Meningococcal C vaccine. This vaccine is not advised on the Australian Immunisation Program Schedule until the age of 12 months but our paediatrician created a fear in us with a statement directed to the life threatening risk of contracting meningococcal before the age of 12 months. This then meant that our son received 3 additional vaccinations in comparison to the majority of the remaining Australian Population at a very young age where his immune system could simply not cope with the toxic load.

What upsets me today is how I was unaware at the time that this vaccine only covered 3 out of 13 of the Meningococcal C disease and that it did not take into account the many other types of meningococcal diseases. According to the Australian Vaccination Network, the overall risk of death for Meningococcal disease was recorded at 1:1,000,000. Since then we also learnt that Doctors are paid by pharmaceutical companies for the percentage of children they vaccinate. The main concern for us though, was the additional exposure to the Aluminium adjuvant which is used as a preservative consuming just under 50% of the vaccine ingredients. When my son was tested for exposure to toxic chemicals, it was exposure to aluminium poisoning that revealed the most alarming concerns and this scored the highest above all other chemicals stored in his body.

At two months of age and onwards his sleep problems emerged and continued to worsen as time went on. He was awake every hour on the hour and there was nothing I could do to console him. All I could do is lain him on the bed next to me but if I were to touch him he would scream and start all over again. I had experienced this sort or avoidant touch behaviour in my work before and when I expressed the idea of autism to my husband, it was quickly dismissed and I also passed my own judgement off as an overreaction due to the lack of additional symptoms categorised with autism spectrum disorder.

Having worked with children with disabilities has prepared me well in applying my skills to helping my son; however there is nothing that can prepare a parent for a child who displays behaviours that appear to show you they do not want your love or affection. When your own child does not know your name or pushes your face away, won’t let you console them when they are upset or bangs their head on the floor, bites themselves and claws at their face, a mother feels helpless and depleted. This is the world we shared before we found what we needed to heal our son.

I have watched Reilly transform rapidly from a world of his own with no communication and self harming behaviours to an interactive five year old boy gaining quickly on his peers in the areas of social and developmental progress. Apart from early home intervention programs run by myself coupled with speech therapy and support from his fully certified assistance dog, the only changes I have made is the implementation of GAPS supplementation protocol, avoidance of chemicals in its many forms and a strict adherence to the GAPS nutrition protocol inclusive of the introduction Detox diet.

We later worked on preparation for school to assist him in catching up with his peers by enrolling him in an early intervention unit 2 short days a week followed by three days at AEIOU (an early intervention program for children with autism supported by some Applied Behavioural Analysis programs). Arriving at this wonderful stage in Reilly’s life is overwhelming and very rewarding however it was not achieved without its challenges.

It initially took great leaps and bounds to achieve a diagnosis for Reilly and this was coupled with the search for appropriate treatment options. These options often take parents on a journey that requires a detailed map in order to find the right treatment. Numerous conflicting options are time consuming for parents to navigate. The list of treatment options is endless and I am thankful that we never considered the option to explore drugs like Ritalin for our son or he would not be the same little boy of health today. The choices are exhaustive and making the right decision is paramount. I took my son to several dieticians, health professionals and Doctors to seek the best advice on diet and treatment for ASD however no direction or guidance was presented on the GAPS Protocol and collective advice often conflicted with another.

Searching for the right treatment took a great deal of time, effort and money with an ever increasing accumulation of new books. My academic research abilities and knowledge gained through my Health Science degree coupled with my work in the disability and mental health field with the Department of Justice was a valuable resource to me during this time. It was through my own extensive research involving travel to several destinations including flights out of state to attend Autism expositions and a variety of conferences, seminars, workshops and presentations that led me to the discovery of a little yellow book tucked in the corner at a Sydney Autism expo. This yellow book became my bible – The Gut and Psychology Syndrome by Dr Natasha Campbell-McBride.

Prior to GAPS my son was an extremely fussy eater, self limiting his food range to an extreme minimum, resulting in a variety of deficiencies and nutrition problems. I sought guidance in every corner to establish ways to get him to eat the food he needed to improve his nutrition; however nothing I found was of use until I followed the Detox with applied behaviour analysis strategies. After only two weeks on the introduction diet, he was eating everything we gave him and even asked for seconds and thirds. He requested food that we had tried to feed him in the past as if he had eaten them several times before. We would never have believed this possible if we had not seen it with our own eyes.

The circles around his eyes have gone, he has gained weight, but more importantly, he is participating in lengthy conversations, socialising in ways never seen before and showing lots of affection and sharing his emotions. The list of improvements goes on but the rest of this story is yet to be revealed as I believe my son will continue to heal and gain developmental ground with his peers as he continues to progress with the GAPS diet.

Not only did I take the long way around to get to GAPS by sifting through competing diets and therapies, but I also spent a great deal of time in working out which supplements to use and this took quite a bit of effort in learning all about the right ratios of omega fish oils, essential fatty acids, enzymes and the search for an appropriate Probiotic containing the right broad spectrum strains as outlined in the GAPS book. I was also very grateful to our Doctor and president of the Australasian College of Nutritional and Environmental Medicine who supported our journey through the GAPS protocol.

The GAPS supplementation protocol in the book did not advise on brands such as Bio-Kult etc or a website where I could access it so I had to make do with what I had at my disposal until I had finally identified which supplements to purchase and where I could purchase them. These included 3 supplements, Bio-Kult the Probiotic made by a team of medical professions including Dr Campbell-Mc Bride at the Cambridge University, Cod Liver Oil and Fish Oil. Some people need a digestive enzyme Betaine with added pepsin, however this can be replaced by homemade sauerkraut which is a lactic acid fermentation containing very significant beneficial bacteria whilst stimulating the much needed stomach acid. The new supplements, accompanied by the introduction diet proved to be invaluable. If only I had someone to assist me with all my questions about GAPS from the beginning and show me where to access the supplements in the first place.

Learning about the diet involved the reconstruction of how we live as it was a new way of life. Preparation of meals involved organic produce and homemade traditional cooking remedies that eliminate the use of preservatives etc. I needed to learn new cooking skills which took a great deal of trial and error before mastering. It would have been invaluable to have someone to show me how to make sauerkraut, homemade yoghurt, meat bone and vegetable stocks and broth and how to make the right decision in selecting the right cookware and storage containers. I won’t lie, there was a time where I felt I lived in the kitchen and cried to the Gods in Heaven to help me with my struggles but as I began to become more confident in the kitchen I soon found my passion. This does not mean that I am a great cook because I can still cook a hungry mans dinner but now I know what to cook and how to prepare for it and more importantly why I am cooking it. My kitchen became the hub of my home.

My most concerning need for support and guidance was when my son had experienced sever die off reactions during the Detox stages. It could have been very easy to stop and give up with the Detox stage because my son had reacted severely to the release of toxins in his body. This is where my idea emerged to become a Nutrition Consultant for GAPS as I knew there had to be parents out their like me who needed this level of support and required some guidance to do it right. I have worked in both the disability and mental health field for over 20 years and have completed a Bachelor degree in Health Science, Leisure and Health, with core subjects derived from developmental disabilities and studies in Nutrition. GAPS is so powerful and I am constantly seeking ways to create community awareness. There is no such service available in Australia and there is very little awareness of the book and diet within the autism and associated health specific community. I have worked with many parents concerned with not only Autism, but with other disorders like immune disorders, OCD, oppositional defiant disorder, schizophrenia, ADD, ADHD and dyslexia, IBS and other digestive problems, depression and women with sever yeast overgrowth who are trying to fall pregnant.

Since starting my business my son has started Prep in a mainstream school where he has transitioned nicely and plays in a soccer team on weekends. His hobbies and interests are computers, chess and other outdoor recreational activities and watersports. He is reading books two to three years ahead of his pears. His more recent interest has been inspired by playing piano and I will be looking into this one next. There are absolutely no self harming behaviours or screaming tantrums on the floor. He is a very affectionate and passive little boy loved by all and loves to interact with his peers. Although his speech development was slightly behind his peers initially, we watched in anticipation as he caught up with his peers.  To this day he continues to consume GAPS meals – why change something that works?

The success with my own son has motivated me to increase community awareness of the GAPS Protocol and how individuals can identify how they believe GAPS may help their condition. Whilst I understand that GAPS is not something everyone is confident in implementing, we need to at least create the awareness to all so that individuals can make the choice for themselves and seek the support and guidance necessary to implement the protocol as early as possible. GAPS Diet Australia and my GAPS Clinic has provided the means to achieve this and also acts as a support platform and resource facility for all who seek it. Supportive families make for an easier transition in implementing the GAPS Protocol but I have found that this is not always the case in some situations.

There is a high divorce rate in families who have children with Autism.  Don’t be discouraged if you fall into this category because we have many single family parents who have been able to achieve this even when one parent is doing most of the work.  Becoming more organised in the kitchen and setting new routines will assist single parents to adjust to the program more readily. I have been delighted to hear how grandparents and aunties and uncles get involved in playing a small part to support children on the GAPS program. I encourage families to work as a team if possible, one person can do the juicing each morning whilst the other prepares lunches and cooks up some breakfast. In no time at all, your new routine will become a natural part of your life. It is also very important to include your children in the education process of good nutrition and cooking in the kitchen. My son used to drag a chair to the kitchen every time he heard the kitchen utensils clanging together, he gets his tasting and mixing spoon ready and loves to juice and crack a perfect egg every morning.

My daughter submitted a video to A Current Affair for the Top Mini Chef Competition with her brother as an assistant in cooking GAPS recipes. Their application of cooking skills were aired every night on A Current Affair for a week until my daughter was awarded as a finalist and was flown to Sydney to compete with the final 8 contestants. She did very well in winning many kitchen appliances and cookware of which I assisted in finding a nice home for in our kitchen.

I know I speak for many others when I say that I am grateful to Dr Natasha Campbell-McBride for not only pioneering the way but for teaching us how to do it for ourselves and show us all that with the right level of support and commitment, it is possible! I am delighted to be working with Dr Natasha Campbell-McBride who advised that the best education one can ever have with the GAPS Nutrition Protocol is one who has experienced it firsthand. Dr Natasha Campbell-McBride’s own son was diagnosed with severe autism and also attends a mainstream school. As a young adult he shows no signs of autism and is studying at college. You can access her story at the GAPS Australia Website under the Clinic page. Thank you for reading my son’s journey and the emergence of GAPS Diet Australia, I hope it brings you closer to starting your own healing journey.

My Son: The emergence of GAPS

By Natasha Campbell-McBride, M.D.

This inspiring story was written in February 2003 before Dr Natasha had completed her book ‘Gut and Psychology Syndrome’.

Dr. Campbell-McBride, a neurologist who also holds a Master’s degree in nutrition, lives in Cambridge, UK, with her husband and two sons (one son was born in the autumn of 1992 and was later diagnosed with autism). Her clinic treats children with autism from around the world, and she is currently working on a book on effective autism treatments.

My son is 10 years old. He is in a mainstream school, doing well. His academic achievements are within normal range for 10-year-olds, although math is not his strong point. He can be clumsy as far as social skills are concerned, but he has friends, and children generally like him. He can be naïve and hyperactive at times, but amazingly mature at other times. His language is excellent with a wider-than-usual vocabulary, and he likes to write poetry and short stories. He is learning to play piano and is doing very well, particularly at composing his own music. No one would suspect what this child and his parents have been through. Nobody who meets him now would ever think of autism in connection with this boy. All this is now. I have been asked to look into the past and describe how we got here. It is always painful for a mother to recall those years of desperation and hard work with an autistic child. It is particularly painful to realize all the things you were doing wrong. If only we knew then what we know now! If only we had done this and that, when he was smaller, he may have developed very differently. However, I do not regret for a moment the mind-blowing educational journey my son took me through.

When he was born, I was an M.D. trained in neurology with seven years’ working experience. But as they say, doctors make the worst patients. When it comes to your own child, you are just as prone to denial and blindness as any other parent. Apart from that, as all the parents of autistic children discover, doctors know very little about autism. They are taught how to diagnose it, but when it comes to treatment, official medicine has nothing to offer. On the contrary, it is hell bent on convincing you that there is nothing you can do and that any other opinion is quackery. So, being a doctor has given me no advantage at all. Our son was diagnosed autistic at the age of three. After the initial shock and grieving my husband and I started to learn as much as we could about autism. In those days there wasn’t as much information available on the subject as there is now, but at least there was something offering our son hope.

I remember that somebody gave us a phone number for Dr. Rimland in California. We had a long conversation with him and as a result our son was on an ABA program by the age of 3 1/2. At the same time he started taking DMG. This conversation with Dr. Rimland was like a ray of sunshine in our lives. Here was a person who knew so much about autism and who was prepared to share his knowledge with us and help us. Here was a parent who did not accept the official position on autism and who had devoted his life to changing that position. I am sure that there are thousands of families around the world forever grateful to this man. I want to add my family to that list.

From the very beginning the ABA program was performing absolute miracles with our boy. I will never forget our first workshop with our excellent ABA consultant, who had flown to us from the U.S. At the end of an exhausting two days of training, she said that in three months’ time she expected our son to speak in small sentences. All of us, including our five therapists, thought that she was dreaming, because our boy had no speech and his understanding of language was very questionable. But to our huge surprise, she was right! We have meticulously recorded that period in our son’s life on video. In three months’ time we were able to have quite a sensible conversation with him.

As our son was moving through his ABA program I devoted my time to learning as much as possible about biology, biochemistry, and nutrition in autism. It was clear to me that our son’s extreme fussiness with food—and as a result, very poor diet—had a lot to do with his autism. I went back to university and took a master of sciences degree in human nutrition. I devoted particular attention to studying the digestive system’s pathology and how to treat it by natural means. The reason for my interest was the fact that our son’s digestive system almost never functioned normally. Beginning the day we introduced solids into his diet, he went through a period of severe constipation, which eventually turned into constant diarrhea. Again, consulting with official medicine was a complete disappointment. Apart from symptomatic drugs with lots of side effects, it could offer our boy nothing to help with his digestive problems, constant fungal nappy rash or tremendous feeding difficulties. At the same time it was clear to me that his immune system was in disarray due to his poor nutrition. Like many autistic children he went through ear infections, chest infections, impetigo, and fungal thrush. And of course, all my medical colleagues offered were antibiotics and more antibiotics.

Based on my newly acquired knowledge I changed his diet dramatically. Our ABA consultant helped us work out a system of introducing foods into our son’s diet. Without that system it would have been impossible to change his diet, as he was so finicky with food. Having examined diets that have been successful for children with severe digestive problems, such as ulcerative colitis, Crohn’s disease, and chronic malnutrition, I realized that just introducing a gluten- and casein-free (GFCF) diet would not be enough for my son. So I have worked on a far more natural and focused approach, which also excludes gluten and casein. The result was amazing, as if somebody had lifted a toxic fog off his brain. He was much calmer, much more able to learn. His eye contact improved on its own and a lot of self-stimulation disappeared. At the same time we introduced a strong therapeutic probiotic. There was no doubt that his gut flora was abnormal. From early on I have tried to give him various probiotics, available on the market, with no particular results, until I found a formula that worked. It was powerful enough to heal his digestive system to such an extent that we could cheat on the diet on an occasional basis without any problems. At the same time it gave his immune system such a boost that I don’t remember now when he last had a cold.

Now he looks a picture of health with rosy cheeks and bright eyes and he is full of energy. Since then I have developed my own probiotic formula, which works very well for autistic children and people with digestive and immune disorders. It is impossible to overestimate the role of the family in the struggle against autism. I have seen quite a few very sad situations, where one parent is trying to help a child without the support of the other parent. Treating an autistic child is a huge undertaking and united families usually succeed much better. I would like to say that what we have achieved with our son, my husband and I have achieved together. Without my husband’s constant support, intellect, and organizational skills I would not have been able to do half of what I have done in these years. Our son is very lucky to have an excellent dad, of whom he is very fond.

A great part of the successful treatment of autism is the fact that parents of autistic children all talk to each other. This is where we get our strength and inspiration to carry on. Our success became an inspiration for many other families, who were calling me and who were willing to try what we did. That is how my clinic for autistic children started. Having seen hundreds of families from many different countries, I never cease to admire their determination and strength in trying to help their children. I have learned a lot from them and their experiences. A few months ago at the end of a consultation, one of the parents looked at me and asked in a stern voice, “Why haven’t you written a book yet?!” That was followed by a number of other parents telling me that I must write a book on autism. I am working on it now. I feel that it is my duty to share the knowledge and clinical experience that I have accumulated over the years thanks to my son and the many families of autistic children I have met.

I hope, too, that my experience will help others to avoid the mistakes that we have made. We all eventually learn by our mistakes, but time is precious for our children. The earlier we start helping them in the right way, the better chance they get to recover from autism. I believe that every autistic child has a chance, given appropriate help. And do not let anybody tell you that autism is incurable!

Update for Second Edition (November 2005): It is hard to believe that more than two and a half years have passed since our story was published in 2003. My son just turned 13. He is tall and handsome and he is a delight. In my previous story I mentioned that I was writing a book. Well, the book has been out for a year now and is very successful; a third print was done a month ago. It is called “Gut And Psychology Syndrome. Natural treatment for autism, ADHD, ADD, dyslexia, dyspraxia, depression and schizophrenia” (www.MedInform.co.uk). The book describes in detail how these conditions develop and how to treat them using a solid nutritional protocol. It has a large recipe section to help people start on the diet, as well as chapters on how to deal naturally with ear infections, constipation, toxicity, fussy feeding habits, and other issues.

My son was very proud to contribute to my book—he has written a beautiful poem, which is published at the beginning of the book. We still have not told him about what happened to him in his younger years; we decided to wait until he is older. There are no traces of autism in him now and he is leading a normal life. He is doing well at school and started playing rugby on his school team. His digestive system works like a clock now, though we still adhere to the diet, which I have described in detail in my book. The good news is that my son can have anything now on an occasional basis without it causing problems. However, the whole family is on this diet as it is very healthy and can prevent many health problems (such as weight gain, heart disease, cancer, diabetes, autoimmune problems, osteoporosis, and allergies) in all members of the family. When we go on holiday we eat what is available, but when we come back home we go back to our diet because it is good for us. Both our children have a considerable knowledge of nutrition now and we often hear them lecturing their friends on what is good for them to eat and what is not. I hope that our story can be an inspiration for parents of autistic children. Never give up on your child, and your child will reward you! © 2007-2008