Book excerpt:
Recovering children from autism using a biomedical approach
Ed note: The following interview with Anita Kyle, Shamus and Kaitin’s mother, excerpted from Good News from People with Bad News by Nyema Hermiston available from http://www.karunapublishing.com.au/
I have two children with autism. The first one is Shamus, who was diagnosed at two years with moderate to severe autism. The second one, Kaitlynn, was diagnosed with mild autism at two-and-a-half years. [Ed note: This excerpt has been abridged and focuses on Shamus’s story only.]
I fell pregnant easily with Shamus. Seven months into my pregnancy, I was in bed crippled with pain. They couldn’t figure out what was wrong, but after that weekend I was fine.
I got to eight months of my pregnancy and went to the midwife for my checkup. When she asked me how my baby was moving, I said to her: “Oh, no, the baby hasn’t moved for a week.” When she asked why I hadn’t been to see her, I told her that an older woman at my work said my baby would be settling down getting ready to be born. That night, she sent me to hospital for a scan and called the next morning to say that my baby hadn’t grown for a month.
At my insistence with the specialist, I had a C-section[1] and the next night Shamus was born, weighing five pounds and two ounces. His umbilical cord had deteriorated, he was jaundiced, weak and it was borderline for him needing to be transferred to the neonatal unit. I put him on my chest and stayed awake with him all night and we kept him out of the neonatal unit.
Shamus didn’t feed well to start with. He was unsettled and wanted to be fed every hour, on the hour. He screamed and screamed until he got food, so it was a rough start. I didn’t breastfeed – I didn’t really know what I know now.
My husband Terry, is a stay-at-home dad. I had to work, because his work wasn’t stable enough, so there wasn’t much option as far as that goes. I had my own business and I went back to work after a couple of weeks of Shamus’s birth and Terry was with him full-time. Shamus was very small, bloated and refluxy. We bought lots of gripe water, because that’s what the midwife told us to do. I really had no clue what I was doing. When he was six months old, the first meal I gave him was a multigrain baby cereal and he threw it all up. That was the first of many reactions to foods.
He was vaccinated on the 15th of December, when he was 15 months old. By January/February, our medical bills had gone through the roof. Overnight, this kid went radically downhill. He started projectile vomiting up to eight times a day. He had gut issues before his vaccination and he was an unsettled baby, but he didn’t projectile vomit until after this vaccination. It would take up to ten days for him to have a bowel motion and then he might have diarrhoea for three days after that.
He started having really big meltdowns. He would leave me with black eyes and bruises down my arms. I could never get him to sleep and it was dire. He might sleep for an hour or two during the day, but the worst thing, was that he never slept between one and five in the morning. He just screamed the house down. We tried calcium, changed his milk formula and kept trying different things, but nobody could give us any answers.
By the time I was pregnant with Kaitlynn, I was aware that I was going to have two babies up at night. In desperation, very, very tired, my husband and I took Shamus to a doctor. She told me that I was an over-anxious mother and I was making him sick. I said to her: “When he projectile vomits and I’m ten kilometres down the road at work, is that my fault too?” Then she realised that I wasn’t the stay-at-home parent.
The situation was so horrific that I moved out of the family home for a time and employed a nanny. My husband would get up in the night to him, then sleep during the day while the nanny would look after Shamus. I used to walk Shamus around the neighbourhood in the pram at three o’clock in the morning. Rocking was the only thing that got him to sleep and it was the only thing that we could do. At that stage we didn’t know that autistic children like to be rocked.
Financially it was a struggle. We heavily mortgaged our house to keep going, because we didn’t know how else to survive. My business was in trouble because I couldn’t be focused enough on it and our huge medical bills were continuing.
By the time Shamus was 18 months, he was craving up to two litres of milk per day. Everyone else’s babies around me seemed to be doing things that Shamus wasn’t. I kept thinking that he might catch up – he might catch up.
We went to a GP[2] who offered me an antidepressant. We saw a paediatrician, who also told me it was my fault. He sent me to have six weeks of counselling for postnatal depression. The nurses and counsellors that I saw told me that I was the most together woman that they had met and that I was just sleep-deprived.
I rang every helpline that I could at all hours of the night, and they kept saying that it was me that was the problem. I was sick of taking him to places and people telling me that it was my fault. Eventually, I went within myself, and thought: “At this rate, my child will be taken off me.” I had this big fear that I would lose him.
When we came home from one doctor’s visit, I took Shamus out of the truck and he had his first seizure in my arms. I thought to myself: “We’re really in trouble now. This child is having seizures and nobody’s listening. [cries] So I rang the doctor and said: “I’ve got to bring him back. There’s something really wrong,” but they wouldn’t let me bring him back. Terry took the phone off me and said to them: “That’s fine if you don’t want to help us.” They told me to go to Starship[3], which is our children’s hospital here and then to sit there and wait, but a junior doctors’ strike was on, so I didn’t take him to the hospital. He couldn’t cope with new places and I was six months pregnant, so I stayed up with him all night instead.
When Shamus was almost two years old and I was about six weeks away from giving birth to Kaitlynn, a neighbour of mine, who was helping me, said that I needed to take him to a homeopath. She booked the appointment and told me: “You are going!” She knew what was wrong, but she didn’t want to tell me. We were there for an hour and a half. It was the first time somebody listened to me. Shamus was kicking and screaming and Terry was trying to keep him under control. He was trying to get out of the office, because he didn’t like being in enclosed spaces. The noise was so horrific that people in the surrounding offices asked: “What’s wrong with that child?” The homeopath didn’t say that it was autism, but she started me on a gluten-free, dairy-free diet. I was so desperate that I went home, took the kitchen apart and went shopping for products at nine o’clock that night. I didn’t understand the concept of good nutrition at that stage, but overnight we went completely gluten and dairy free. Within three days the projectile vomiting stopped. I thought: “This woman knows something.” The homeopath treated him with remedies. I wouldn’t say that he was recovering, but he was calmer, although he was still screaming through the night. Then she referred me to a paediatrician who specialises in biomedical treatment[4] for autism.
I went home and googled the paediatrician and saw the word ‘autism’. Then I googled ‘autism’ and Shamus’s symptoms ticked every box. It was then that I realised that there really was something wrong with him. It still upsets me all this time later, what we went through and how I had to fight so hard to get an answer.
I couldn’t get in to see the paediatrician for six weeks. I knew that I couldn’t last six weeks and I told them that I was a desperate mother. The receptionist explained that there was a long waiting list. Then a childcare nurse came to our house to check on Kaitlynn just after she was born. Of course, Shamus screamed as soon as he saw her. (We couldn’t do things like mow the lawns, or turn on the waste-master, because he was so sensitive to noise.) She said to me: “You’ve got one just like me – your son has autism.” I told her that I was trying to get in to see the paediatrician and burst into tears. She said: “My son goes to this doctor – I’ll get you in.” She got Shamus in the next Monday and he was diagnosed with ‘high to moderate’ autism, with a little bit of severity there.
I really didn’t know what autism was. I remember going away crying and thinking: “This is the reason I’ve lost him.” He didn’t care whether I was there or not. Then I thought: “There is something wrong with him – great.” That made me feel relieved, but the other side was: “Now what am I going to do?” I still thank that nurse.
The paediatrician prescribed all these supplements and we spent over $500. Little did I know that we were going to spend over $300,000 – that’s what we’re up to now, five years later. I gave Seamus all the supplements and it was boot camp. She also recommended that I see a naturopath to help me with his diet.
I wasn’t even thinking recovery. All I wanted was for Shamus to sleep – that’s all I wanted him to do. The naturopath was away for a few weeks and when I finally got in touch with her, she said, “I’ll see you on Friday.” I said to her: “No, you will tell me what to do now!” So she said to me: “Wean him off the rice milk, go and get some organic beef bones, roast them, boil them and give him the beef broth.” In her talks, she still tells everyone about this “one very persistent mother.”
I didn’t wean him off the rice milk – that got thrown out as soon as I got home. I made him the beef stock and fed it to him that night, to go to bed with. We woke up the next morning and I asked my husband: “Did you get up to him in the night?” He said, “No, did you?” We thought he must have died in the night and ran into his room, to see that he was still alive. He hadn’t woken up all night. I phoned up the naturopath the next day and told her that Shamus had slept through the night. I thought that was the end of it and that he was going to sleep through the night forever. She said: “Now for the bad news. He’s not going to sleep for the next six weeks, but we will get him to sleep. But first, he’s going to have massive ‘die-off’[5]. I didn’t know what die-off was. Shamus had an overgrowth of yeast in his gut and also bad gut bacteria.
When I next saw the naturopath, she said: “You’re not going to do the gluten-free, dairy-free diet. You’re going to do the GAPS[6] diet. It will be the hardest thing you will ever do in your life.” She wasn’t far wrong. Five years ago there were no cookbooks on coconut flour or almond-meal flour. [laughs] There was nothing. I had to look things up on the internet and read books about biomedical food and recovery.
I started trying to cook this special food. I remember carrot cake being thrown up against the wall. I didn’t realise that coconut flour absorbed that much moisture, so I was throwing more eggs and oil in – it was a disaster. I was still working full-time, but eventually I got my head around it.
Over the next six weeks, the ‘die-off’ was so bad that Shamus was getting worse day by day. He was screaming, had the worst temper tantrums, was vomiting and not eating. He looked shocking – he was so tired that he had these big black panda eyes. I called the naturopath and told her that I couldn’t even take him out of the house and asked her to come and see him at home, so she did. She didn’t tell me at the time, but when she left, she called a specialist overseas, because she had never seen such bad die-off. She wondered if he should stop the diet, but the specialist said to her: “Tell the parents to push through. The worse the die-off is, the better the recovery.” So the naturopath came to my home and basically nursed us through it.
When we got to the six-week mark, Shamus started to change – it was just amazing. He looked happier, he was brighter and he wasn’t so zoned-out. The changes were small, but we could see them. Instead of screaming for five hours a night, he only screamed for three hours, then two. It took four months to get him to sleep through the night, every night, for one whole week. We would have one good night, and then we might be up for two nights. Then he would sleep for two nights and we’d be up for three nights. But eventually, I could settle him more easily and he’d only scream for half an hour. His screaming always started at one o’clock in the morning.
I kept doing the GAPS diet and then the naturopath said that he needed more fermented foods and asked me to ferment coconut water. I drove all around south Auckland and got lost, ending up in tears, because I couldn’t find the place where these young, drinking coconuts were. Finally I found them.
Well, we didn’t know what the hell we were doing with these coconuts. Terry went into the backyard and started machete-ing them and we started to ferment them. We didn’t know how to ferment, but Shamus was drinking it. We started putting the baby on it too, because the big fear in the back of our minds was wondering what she was going to be like. Over a period of two and a half years, my husband perfected the fermentation of coconut water and now we sell it as our business. That’s what we do now for a living.
[Ed note: The website for Anita and Terry’s coconut kefir business is http://www.thekefircompany.co.nz/ ]
We were also giving Shamus sauerkraut[7] and all the low-carbohydrate food. He became calmer and went to the toilet better. He seemed more focussed and wasn’t beating me and pulling my hair so much. He stopped stimming[8] and flapping as much. He was happier and he started to smile. We’d never seen him smile before.
We had started his treatment in September, but we thought we would have an autistic child forever. So the following January, we moved into a house that had a fenced-in section and a kitchen that looked out onto the garden, so I could see the children and know that they couldn’t get out onto the street. I spent so much time cooking, I couldn’t only look after the kids. I had to cook all weekend to make enough food to freeze during the week when I was working. We also needed one room at one end of the house for me to sleep in and have Shamus at the other end. By April, Shamus was sleeping through the night.
I started to understand my own background and childhood – there had been huge problems. I had bad learning difficulties, chronic constipation and was hyperactive. I also had dyslexia and dyspraxia. I was expelled from school when I was 12 and left high school at 14 without any qualifications. If it were now, I would have been diagnosed as being on the autistic spectrum. It was then that I began to understand my father. He was an odd, quirky man who probably had Asperger’s syndrome.
When Shamus was three years old, we took him to kindy[9]. He sat under the table and screamed his head off, but he was less zoned out, more engaged and making more eye contact. He was still not speaking and only making sounds. We got him a teacher’s aid there.
We give Shamus chiropractic treatment, he has Epsom salts baths and he has saunas every third night. We did rounds and rounds of suppositories and he had colonics to deal with his constipation. We could tell he was constipated by his anger and aggression building and you could see dark circles under his eyes. After giving him a colonic, one of the hardest things I have ever done in my life, he would start laughing straight away. The change was just amazing. When the kids get sick, it’s off to the homeopath – that’s all we ever use.
People cannot believe Shamus is autistic now. A mum came up to me and told me that she took Shamus for athletics and said what a sweetie he was. She wanted to know why his speech was a little bit delayed. When I told her that he had autism, she said that she thought he was misdiagnosed.
Today, he is at a mainstream school and has been assessed as being ‘neurotypical.’ He has a teacher’s aid for four hours a week to help with some reading and writing. Recently, his teacher told me that the progress he has made this year is well beyond a neurotypical child. In another year, she said that he would be completely caught up.
We still do speech therapy. We did a lot of RDI[10], which I don’t recommend to parents when they first start out. I did everything at once. If it was going to help autism, I did it. After my own experience, what I say to parents now is to get the gut right first. “Get the child thinking and in the same world as us, before you start therapy.” If children can’t think straight, therapy is a waste of money and time.
In my heart of hearts, I always felt with Shamus that if I could heal his gut, I could heal his autism. Knowing my family history and my own gut as well, I just knew his gut was his problem. I still monitor what he eats. When we first did the GAPS diet, he had no fruit and I still don’t let him have loads of it. He has the kefir twice a day – my kids have big doses of it.
Shamus has been invited to seven birthday parties this year. When he was in kindy, he never got invited to anything. I ran into an old neighbour the other day, whose daughter is a psychologist, working with autistic children. When I told her my children had recovered, she told me that they must have been misdiagnosed.
[1] C-section, or Caesarean section, is a surgical procedure where an incision is made into the uterus to deliver a baby.
[2] GP – General Practitioner.
[3] Starship Children’s Health is a dedicated paediatric healthcare service and major teaching centre, providing family-centred care to children and young people throughout New Zealand and the South Pacific.
[4] Biomedical treatment for autism refers to the process of redressing the anomalies in a patient’s biochemistry by using specific nutrients. It is based on the pioneering work of Nobel Prize winner, Linus Pauling, who demonstrated that naturally occurring vitamins, minerals and micronutrients can have a profound impact on health and body functions. Pauling started a discipline called ‘Orthomolecular Medicine’ based on these principles.
[5] Candida ‘die off’, also known as a Herxheimer response, occurs when yeast in the gut is killed off too quickly and overwhelms the body with toxins that create symptoms caused by the candida being deprived it of its food source. Austrian Dermatologist brothers Jarisch and Karl Herxheimer discovered the phenomenon in 1895.
[6] GAPS – Gut and Psychology Syndrome, written by Doctor Natasha Campbell-McBride, promotes a ‘specific carbohydrate diet’ (SCD) based on the work of Doctor Sidney Haas (1870-1964), who pioneered a low-carbohydrate diet to treat coeliac disease. He used it successfully on his patients for over 50 years.
[7] Sauerkraut is fermented or pickled cabbage.
[8] Stimming means self stimulation, or carrying out a repetitive body movement. Hand-flapping in autistic children is a common stim.
[9] Kindergarten – preschool education.
[10] RDI – Relationship Development Intervention® is a parent-led approach that focuses on teaching children how to develop social skills.