Danny (not his real name) was "born with autism" in 2006. He was finally diagnosed at 2 yrs 4 mths and began intervention immediately. Danny's mum, Gillian, writes about Danny's recovery journey, which took only three years.
Several things impressed me about this story. Gillian said, "There was a possibility that if we did not do enough to move him from 'non-verbal' to 'verbal', he may be non-verbal for the rest of his life." That really made me go 'wow!'. I see far too many parents who say, "Oh, maybe he'll grow out of it." But no, Gillian knew exactly what was going to happen if she did nothing and she took the bull by the horns. I take my hat off to her. All parents should be like this.
Secondly, Gillian is very systematic and analytical. She assiduously recorded every intervention and every result, and she even tested the efficacy of the interventions by stopping them and then observing whether her son regressed. In some cases, she even had tests done, with solid numbers for before and after. By doing this, she was able to determine which intervention worked, in what way and how well it worked (or not). She approaches treatment methods like someone who is conducting research (something which should be done but no-one wants to fund it). I like the way she approaches things because I am a researcher by training and my brain also runs along the same track. In autism, the same symptoms in different children may be caused by different things, so the best doctor really is you - the parent. In this, Gillian did an outstanding job by pinning down the exact cause of every problem that her son had. She also confirmed something that I had long believed but could not prove (because most parents do biomed and therapies concurrently, so you can't tell which was having a greater effect) - that treating the underlying biological issues is more effective and cost-efficient than doing therapy. There - I knew it!!
This story was originally posted in KLbiomed.
My 3-year ASD Journey
by Danny's mom
Sep 5, 2009
April 2009 was our 3rd year on the ASD [Autism Spectrum Disorder] journey. Have been doing a lot of reflection lately. Thought it might be good to summarise some of the highlights and lowlights, for the reference of other parents starting the journey.
The 3 years can be broadly categorised into 3 phases -
Phase 1: Kick-starting (first 8 months) - Daily monitoring
Phase 2: Optimising (subsequent 21 months) - Weekly review
Phase 3: Character Building - Letting go
Phase 1
My son was born with ASD, so his biological issues were perhaps more severe than most of the other kids who regressed later. He didn't have any speech or shared attention since birth. The initial tests we did on him also showed that his biological system was a total mess, and the healing process for him perhaps would require a much tighter diet and take a longer time than what other kids would require.
Pre-phase 1 (pre-diagnosis): Life was very challenging due to my son's hyperactivity and sleep disorder. He was rejected by his school and we could not take him to public places as he would pull things from the shelves and run towards cars. He had unusual strength, and under fear, could be even stronger than adults. He was a very fussy eater, only ate a few types of food and craved yoghurt and juices non-stop. He had a lot of sensory issues and was very particular to touch and sensitive to loud noises. He would pick up small objects and put them into his mouth to chew. It was very stressful to always keep an eye on choking hazards. Eating out was not easy either - he wouldn't sit still. There were a few incidents when he bit off the plastic spoons and swallowed the pieces and I had to rush him to A&E [the Accident and Emergency department]. Also, he did not sleep well and woke up many times at night. I was exhausted after 2.5 yrs of sleep deprivation, with a full time day job. It is also very heart-aching to see my child totally unaware of the world around him. He did not have emotional bonding with anyone, stimmed on strange things and was not able to learn any basic skills like toilet-training, self-feeding, not even putting on or taking off of shoes. In addition to that, the out-of-the-blue sudden outbursts of laughter or screaming was very disturbing to me.
Realising my son had ASD was shocking, but on the other hand, a relief for me. At least I knew what were the problems, rather than wondering what was wrong all the time. I did not spend too much time asking “Why me?”, I just picked myself up from rock bottom and started to read books, talk to other parents and research on the internet to see what could be done to improve the situation.
My son started intervention at 2 yr 4 mths old. Phase 1 was the most intense period, although it was short.
It was physically and financially very demanding. I dealt with it as a "crisis" period, where I had to drop everything else I can drop to focus on this single issue in my life for that moment. No leisure activities, no personal time, and I also had to let go of all extra-curricular activities for my daughter, who was 6+ at the time.
We just did the bare minimum for everyone to survive, and daily life during this period revolved totally around the intervention needs for my son. I also put in extra hours, slept very little, perhaps only 4-6 hrs daily. I am not sure whether it was a wise strategy, but based on what I saw in my son at the time and based on the challenges that the therapists faced in working with him, there was a possibility that if we did not do enough to move him from "non-verbal" to "verbal", he may be non-verbal for the rest of his life. So I was very much driven by fear at this phase and was willing to trade everything to get him to speak and function better.
Looking back, perhaps it was the right thing to do. Although I have to compromise in some areas of my daughter's development (like Chinese, music, dance etc.), to me, it is better to have two happy average kids than having a huge gap between the two. And it turned out to be better than what I thought the worst-case scenario would be. The bonus is that my daughter learned to be more independent. By the age of 7, I did not have to monitor her homework and I didn't even know when her exams were anymore as she was very much self-managed in her studies.
Based on books I read, I decided to work on intensive ABA [Applied Behavioural Analysis] immediately and dietary interventions (GFCF - Gluten-free, casein-free diet) in parallel, starting in Month 2. Due to the location we lived in at the time, we used an ABA therapist from Australia who came in once in two months for about a week and gave us some coaching on how to do ABA ourselves. Later, I found a British speech therapist living in a nearby town. She came in every 2 weeks and spent 2 days, and gave us some oral-motor and other exercises to work on. There was no qualified OT [occupational therapist] in the place where we lived at the time, so we did not do much OT [occupational therapy].
At the start of the intervention programme, I had given some thought about what role I wanted to play. I realised I would not have the option to stop working or work part-time, as I need the income to fund the interventions. So I decided that I would be the overall “program integrator/manager" - conserving my time on reading and talking to other parents, comparing the pros and cons of different interventions, analysing his daily progress, telling the different therapists (ABA, speech) what areas to focus on and adjusting his diet and supplements. I recognised I needed help in other areas like sending and picking up the kids, shopping for ABA toys/cooking ingredients, trying recipes, clocking enough DIY ABA therapy hours, etc., so I arranged for as much help as I could, including paying relatives and friends. Even my colleague's teenage daughters were hired to help. These gave me some occasional breathing space to spend more time thinking on the next steps rather than being totally tied up with the execution of the ongoing interventions.
In Phase 1, however, I was very closely involved in the day-to-day interventions, despite not doing everything myself. We used a daily log, treating the situation like in ICU, as I needed round-the-clock data to adjust the treatment. Whoever was spending time with my son, whether a therapist, a domestic helper, family, even my 6-year-old daughter, had to fill in the daily log on everything - from what he ate, bowel movements, where he went, how he behaved, what words he said or things he did. I would review the log at the end of the day and based on the analysis, gave instructions for the next day - what food/supplements to adjust, what words/areas to focus on.
Moving from non-verbal to verbal was the biggest hurdle in the whole journey. It took every drop of energy we had to get this toughest nut cracked. It took 6 weeks of intense ABA, about 3-5 hours daily, to get the first word out of him, in parallel with GFCF. Speech was so difficult for him. After a cumulative 130+ hrs of ABA therapy, hearing the first word "O" (for open) was like a miracle to us. It was lucky that we didn't judge him from what he could not do and chose to believe he had more potential than what his physical symptoms manifested at the time. At one stage, the therapists suggested that he might have apraxia and not likely to be able to speak properly, and asked us to switch to PECS [Picture Exchange Communication System] instead.
I reckoned my son's condition was a lot more serious than others, as in many other cases I have seen in the past few years, most ASD kids learn speech fairly quickly with GFCF diet and some ABA. For those who have a higher hurdle, overcoming the inital speech barrier can be very draining and needs a lot of sacrifice, but for us, the transitional sacrifices were worth it as thereafter, things become easier. As my son learned to request what he wanted, he became happier and more affectionate.
After 2 months on ABA and GFCG, my son had a vocab of some 60-70 single words, and was quite easy to take care of. It was a relief and I decided to take him to Kuala Lumpur to do a "thorough check". Like many parents starting the journey, I thought the doctors knew all the answers. The specialist we consulted in a private medical centre was also supposedly doing biomed. [My note: There were no proper biomed doctors in Malaysia prior to April 2010.] She prescribed a full range of tests - urine, blood, CT scan and many other tests that I could not remember the names. The bill came to RM10,000 [that's 6 months' salary for the average person!] in total. When the test results came back, she suggested ABA and GFCF, which we were already doing. My first lesson was that I could not rely on doctors to help my child - and an expensive one!
Discovering the impact of salicylates was another major milestone. The effect of salicylates on ASD kids is not very well recognised in the US ASD and DAN [Defeat Autism Now!] communities (perhaps because it is difficult to practise?), so at the beginning, I thought doing GFCF would be adequate. Although I could see my son had calmed down from GFCF and more receptive to teaching, there seemed to be still something else affecting him - sensory issues, stimming, short attention span, and he needed a lot of repetitions to learn new things. There were also a few episodes of sudden bursts into laughter, without any obvious triggers. It puzzled me as the GFCF diet was already very tight.
However, in one of her visits, my Australian therapist told me about a story of a teenage ASD girl who had been on a low-salicylate diet for a long time. One day her mom allowed her a little diluted apple juice when eating out, and suddenly she felt she lost control of her body and acted strangely. Another story my British speech therapist told me on another occassion, was an ASD boy who ate a lot of corn and always knocked his head on the wall. One day his mom started to make a connection that all his favourite foods are yellow and suspected corn. She took out corn and the child stop knocking his head and started to interact more with others. The two separate stories intrigued me and I googled to find out more. I discovered there is a lot of documentation and many testimonies of the benefits of a low-salicylates diet for ASD, ADHD and Asperger kids in UK and in Australia. So I decided to give it a try.
We first eliminated the artificial forms of salicylates, like preservatives, artificial colourings, artificial seasonings, MSG, etc. After a few weeks, we eliminated the natural forms of salicylates in food as well. Within a month, my son made a leap in his learning abilities. He was already learning some 8-9 new words a week with intensive ABA and GFCF before that, but the more salicylates we eliminated, the faster he learned. After 2-3 months, he was learning 30-40 new words a week without the need for ABA. We only did some oral-motor exercises to strenghten his oral muscles and correct his pronunciations. I realised that my son's learning capability was largely affected by salicylate exposure.
Around that time, through the introduction of another friend, I found a parent in Europe who had a child recovered through GFCF, no-corn and low-salicylate diet. I talked to her on the phone and described my son's conditions to her. She reassured me to keep doing the diet 100% and suggested I start him on supplements. In Month 5, after a lot of hassle with the customs, I finally managed to get hold of some supplements from US and started my son on SNT [Super Nu-Thera], fish oil, probiotics, essential minerals and amino acids. He continued to make more and more progress as we added the supplements. Most of his ASD traits have diminished and he looked and behaved just like other kids in public.
By his 3rd birthday, after 8 months of intervention, I felt I could slow down the pace. He was functioning ok, toilet-trained, self-feeding, self-dressing, talking in short sentences of 3-4 words, answered simple questions and did not have any behavioral issues or sleeping problems anymore. We were on our way relocating to Singapore.
Phase 2
My son started school for the first time at 3 yr 1 mth. During the school interview and doctor check-up, I just said he had a speech delay because I wanted to see how he coped without the label. Neither the school principal, teacher nor doctor suspected anything when they saw him briefly, for 20-30 minutes. Partly because I was exhausted and needed a break to deal with the transition and settling into a new job and partly because I wanted to experiment to see how he could cope without interventions, I decided to take a break, stop all the therapies but maintain the diet and basic supplements for 4 months.
As I knew he is very sensitive to salicylates, I started to give him Phenol Assist when he went to school, and started to change all his personal products and home cleaning products to low-chemical, unscented types.
Blending into the large group setting in school without any support (the school refused shadow aides) was another major hurdle for my son. While he was fully verbal and very chatty at home, he didn't feel comfortable speaking much at school. I was busy with my new job and settling in at that time, so I didn't spend much time observing him at school and had much less interaction with him after work as well. Also, as he had not been in school before, his body did not have immunity against a lot of germs, so he fell sick every few weeks and we had to give antibiotics in one of the more serious infections. It was a very unhappy time for him as he started to shut in and would play on his own at school. At home, he still talked a lot, so I didn't realise what was happening at school. There were however, some signs that made me feel something was not right. He became emotionally more insecure, would follow me everywhere at home, even cried outside the door when I was in the shower.
In hindsight, perhaps I should have arranged for a more gradual transition, like starting few days of school blended with alternate days of one-to-one therapy for him and spent more time observing him in the new environment. But as he was young and relatively high-functioning, I felt there would be time to catch up, so I wanted to see what would be the extent of issues he would have had without therapies, to pitch on the level of investment. Also, as I had worked extremely hard in Phase 1, the lack of sleep/exercise, lack of personal time and unhealthy diet for 8 mths had taken a toll on my physical and emotional health, so I needed some time out to "repair" myself, to continue the journey.
In Phase 2, I didn't do daily logging and analyses of my son anymore. I still observed him closely when I spent time with him, made mental notes on my observations and at the end of the week, I would record the new things we tried and observations we made, in the log. Every few weeks, I would look through the past record, trying to see a pattern in random events and decide what next to try or adjust. I had a lot more free time for myself and my daughter and working on my son's intervention was not really a lot more demanding than raising a normal child. The main challenges remained finding enough food varieties and ensuring a continuous supply of his favourite foods.
After 3 months in the school, his class teacher started to pick up clues that he was different from other kids, and suggested he start one-to-one therapy with a SLP [Speech and Language Pathologist] at school, 3 times week, half an hour each.
I also decided to do a hair test for him and it showed that his zinc and magnesium levels were low, but had a lot of heavy metals. We started zeolite when he was 3 yrs 4 mths. I did some reading on various manipulative therapies, like JSJ [Jin Shin Jyutsu (acupressure)], NAET [Nambudripad's Allergy Elimination Techniques], Braingym, CST [Cranio-Sacral Therapy] and decided to try CST on him a month later.
Zeolite had a profound impact on him immediately. Within few days, he became more spontaneous, had fewer tantrums, was more patient, constructed longer sentences and had more more pretend play. CST also helped him. The effect was less visible but he started to name more of his friends at school and was emotionally more stable. But around the same time, we also increased his amino acids and introduced digestive enzymes, so I could not pin down exactly which contributed to what.
At one stage, his stimming suddenly increased a lot and his attention started to decline. One day, to my horror, I found out that I have been buying the wrong juice for him for the last 6 weeks. It was pomegranate mixed with grape juice, which had a similar label as the pure pomegranate juice. [Grapes contain natural salicylates.] I removed it immediately and the stimming started to subside. The negative effects lasted another 3-4 weeks before the salicylates were purged out of his system. A small mistake on my side in not reading the label carefully resulted in increased stimming for about 2.5 mths and a more distant child. But luckily, the issues dissipated after the culprit was removed.
Around that time, I convinced myself to give DAN doctors another chance, as I didn't want to draw my conclusion based on one single bad experience. The DAN doctor recommended an Organics Acids Test (OAT) and based on the results, suggested a few supplements. Supplements like co-enzyme, vitamin C and B-complex helped him a bit. However, one of the recommended supplements, chromium picolinate, caused him to run around in the supermarket, which had never happened since we started GFCF 1.5 yrs ago. He then lost his appetite totally for a week. I stopped the supplement immediately and the side effects diminished. This second bad experience made me realise that DAN doctors, especially those without ASD children of their own, are not any more knowledgeable than parents and were probably making poorer judgements than parents, as they are a lot more remote from the issues of ASD kids and were making wild guesses based on very superficial description/stories they heard, or from the results of some tests which are not foolproof. If it is going to be experimental anyway, I would rather experiment myself, as my priority is always the health of my child. For someone else, the interest may be more to prove a theory or make more money.
Although his speech development has improved with zeolite, amino acids and enzymes, there still seemed to be some things that affected him biologically, which I could not pin down. He did not like sit-down activities like colouring, crafts, etc. He could only sit for a few minutes, constantly distracted by other things in his surroundings. At that time he was nearly 4 years old, and from the positive results I saw from zeolite, I felt more comfortable to increase the dosage slightly but still keep it lower than the recommended dosage.
I also decided to try DMG [dimethylglycine - a type of amino acid] after talking to a few parents who had seen positive results, and a lot of reading on the pros and cons. DMG had a profound impact on his attention - it was like someone turned on a switch in his brain. Suddenly, he was able to focus better in sit-down activities, started to be interested in board games and could sit down to finish one full round of snake and ladder game with his sister, and started to use more abstract descriptions in his speech. The low dosage of supplements, which cost little, gave him a lot more gains in a week than the last 6-7 months of 3 times weekly speech therapy at school. We also put him in a children’s group music class in those few months, but without addressing his biological deficits, he could not fit into the music class well and the money and time invested was mostly wasted.
After 9-10 sessions of CST [craniosacral therapy] in the last 6 months, I didn't see further improvements and decided to stop. I have heard a lot about RDI [Relationship Development Intervention] and was contemplating trying it. However, as I had a full time job and travelled occasionally, I would not be able to commit to the time requirement for RDI. I decided to DIY, just read some books and articles and made a conscious effort to integrate the principles of RDI into my daily interactions with my kids. It was hard to change to using more declarative language than imperative language, but as in any new thing, after a while it became more natural. I think it did help him in subtle ways, and it was good for family bonding.
The other pieces of the puzzle for my son were the reactions he had occasionally from exposure to smell and touching of chemicals/fragrances, etc., and some uncomprehended fears. Sometimes, after playing in the pool, he would have more stimming. Or sometimes, after taking a ride in a taxi with a strong air freshener, he would be more moody. Though he was doing well, there were still some subtle things that set him apart. His tone of voice was slightly different from other kids, although not very obvious. He sometimes still got a bit over-excited about things he liked. Were these part of him or was something else affecting him? I was rather lost.
Doubting whether I was on the right track, I called up my friend in Europe again and went through the list of supplements I used. She reassured me these issues would not be the permanent features of the child - her daughter went through these as well. She told me to keep doing the diet 100% and suggested I try No Fenol and Candex. I told her that I was already using Phenol Assist. As for Candex, the test did not show any yeast, and most books I read were using Diflucan/Nystatin [for yeast]. I was reluctant to add more supplements but she told me she that did not want to use pharmaceutical products like Diflucan/Nystatin on her child, and No Fenol and Candex were critical for her daughter's recovery. No harm trying as they are natural ingredients, and tests are not always accurate.
After some reading and research, I did not come across any cases of severe reactions from No Fenol or Candex. There was nothing to lose, so I decided to give them a try anyway. I stopped Phenol Assist and started on No Fenol first. My son was 3 yrs 10 mths then.
Around the same time, as we have stopped craniosacral therapy, I wanted to explore another type of manipulative therapy as these are practically risk-free. I was thinking of trying Braingym and MNRI [Masgutova Neurosensorimotor Reflex Integration method], but the logistics were not convenient for me. Besides, I don't like doing manipulative therapy at home as I am very bad at skills that require precision. One day, I read about Innate NSA [Network Spinal Analysis] in the Expat Living magazine, and was intrigued by the feedback given by others. As the location is very near to our place, I decided to give it a try. The doctor recommended that the parent and child be treated together, so I started it on myself too. Although the touch was very gentle, I felt the impact it had on my body in the first few sessions. For my son, it was difficult to keep him still on the therapy table for 10-15 minutes initally. But after a few sessions, he seemed to enjoy it and would go onto the table by himself without my company.
The first few weeks of NSA, there was a lot of release of "past traumas" from my son, and later, myself too. It seemed like NSA somehow released the deeply-ingrained trauma in the body, and we went through a phase of ventilation - tearful, moody, body-aches, but luckily, it wasn't at the same time. His effects came out first and were shorter, perhaps because he is much younger, and mine came out few weeks later, probably because they were much more deeper, and for a much longer period. It was a challenging phase but it was well worth it.
These new measures - DIY Relationship Development Intervention, No Fenol and Network Spinal Analysis have helped my son tremendously. He did not react much to incidental chemical exposures like smells, pool chemicals and touch (colours) anymore. The "uncomprehended fears" that he displayed from time to time in the last few years disappeared. He became happier - better at regulating his emotions, more affectionate and developed closer bonding with those around him. He had more interest in learning - his interests broadened and he started to like watching the Discovery Science Channel. He was more sociable - the tone of voice became very lively and natural and he started to display a more cheeky and playful side of his character.
For 3+ months, he just made more and more progress daily without us doing much apart from the diet, supplements, and once-a-week NSA session. Later, we decided to let him do once a week speech therapy to help correct some pronunciation. He tends to pronounce the sound "l" as "n".
After seeing a lot of progress from him in the last few months, I became complacent and thought I could cut down the supplements and gave him some food containing salicylates. He was ok for a week or two, but after that, the deficiencies of key nutrients and intake of salicylates started to affect him. His attention declined, stimming returned and he started to shut in and play on his own. I had to accept that his body still needed more time for healing. We tightened the diet again, went back to the full supplementation regime and within 2 weeks, he was on track again.
The next 4-5 months was smooth sailing. He just made more and more gains daily with the tight diet and broad variety (but low dosage) supplement regime. We did another hair test again and tuned his minerals based on the results, which helped him a lot. His toxins had gone down significantly after a year on low dosages of zeolite (on and off).
He was emotionally very stable, started to write alright, was able to express emotions and show empathy, talked regularly about his school and friends, paid attention to how others did things and imitated well. He was more willing to try new things, was able to sit down for a 90-minute movie and focused well. He also started music class and gym class. This time around, with his biological issues addressed, he was able to participate in the class very well. I was in most of the 8-10 sessions of group classes with him and comparing him with other normal kids, I could not tell him apart anymore. He was 4 yrs 8 mths old.
Around that time, we did a blood test to check his liver and thyroid functions, and B12 and iron levels. This was after about 2 years on various supplements. He did not cry while watching the nurse poke the needle, unlike 2 years ago. However, after that, every time we went to the medical centre, he would ask, "No injection?"
The test showed his body functions were ok, in fact, most of the results looked better than 2 years ago and most indicators are in the middle of the normal range, unlike previously - more at borderline of the range. The test showed his iron was slightly low, perhaps because he doesn't like vegetables and red meat like beef and lamb. I added a small amount of iron to his regime. For B12, it was on the slightly higher end of the range, so I decided to stop the B-complex. He was a little tired the first few days we stopped the B-complex, but after that, the body adjusted and he was alright without it. We gave him a small box of rice milk enriched with a little B12 daily to bring to school so that he would still get some small amount of B12 through food.
I felt more confident that he was on the right track and decided to introduce Chinese classes to him. He also started regular swimming classes and enjoyed it (we tried a year ago but he was not ready). He started to enjoy sports like ball games and gym more, and had better stamina in outdoor activities and better coordination. We also started to let him practise on writing and numbers. A year ago, he was not ready and not interested. I did not want to push too much at that time as I preferred to address the speech and social aspects first before addressing academic development.
It seemed that we have tackled all the major pieces in his biological puzzle by now. The remaining one was the medication. In the last 1.5 years, with detox, probiotics and vitamin C, he hardly got sick, unlike before. We did not have to use antibiotics for him since he was 3 yrs 4 mths old, around the same time he started detox. He would only get an infection like once in 4-5 months, and usually only had mild fever with no cough/sinus problems associated with it. I had switched him from children’s paracetemol to crushed white Panadol [paracetemol] tablets due to the concern of salicylates and artificial ingredients. He did not regress from the Panadol tablets, however, every time after taking it, he would wet his bed for a few nights. I suspected the gluten/corn in the starch of the tablet affected him. After consulting a naturopath, I decided to switch to a homeopathic, alcohol-free remedy for fever and it worked well for him, without any side effects.
Around July/August 2008, I decided him to move him to a larger school. Recalling the negative experience my son had in settling into a new school a year and a half ago, I was a lot more cautious this time around and was prepared to take time off to accompany him in the first few weeks to settle in. But the transition was smooth sailing this time around. I only took him to see the school and met the teacher once, and on the first day of school, he just took the school bus by himself happily. After a week, he was able to walk from the school bus to the classroom by himself, which was quite a long walk as the school is large, and his class was on 2nd storey at the end of a long corridor. His 9-year-old sister joined the same school two weeks later and he asked her, "Do you want me to bring you to your class?"
He also blended in well with his peers in class and enjoyed school very much. Every day, he would tell me things about his school, who his best friends were, who had been mean, what were the new things happening in school...
Everything seemed to fall into the right place by now. It was Month 29 on the journey.
One more thing to try - I remembered what my friend told me about yeast. I didn't restrict sugar intake for my son, and he did like sugar. So I gave a try on low dosages of Candex. There were very mild die-off effects - very subtle - he just became slightly crankier for a week or two. Thereafter, he made further gains. Again, very subtle. Perhaps his yeast issues were minor. He paid more attention to subtle clues in conversation, was sharper in observing inconsistencies, made comments about hairstyle/clothes, there was more risk-taking and he grasped more complex concepts.
Phase 3
Last part of the story. This was written in April 2009 [5 months before]. Since then, I have made further changes to my son's supplement regime and he made further gains. When I have time in the future, I will do another update.
It is now Phase 3. I finally feel that he is indeed on the right track, and I have a good understanding on most of the major biological factors affecting his functioning. Although I still need to keep an eye on his development, adjust his supplement regime and watch his exposure to chemicals, the frequency and requirement of my attention is much less now. Instead of reviewing weekly, I can now check on him on a monthly or less frequent basis.
Around that time, as his school hours extended to afternoon, I needed more food options for him and I wanted his food to look more like his peers’. So I started searching and ordering online and later, for economy of scale, I searched for more people to join in on the orders. I also started to get more equipment to make different varieties of food for him. After a while, I realised that instead of spending hours to make one food, invest thousands in equipment or pay several hundreds on shipping costs for one or two people, it made more sense to do it at a larger scale, and the idea of setting up a GFCF shop was conceived.
I had a lot of hesitation on setting up the shop as it would mean taking away a substantial amount of my free time from the children for a while, and I had reservations whether the small demand would ever be able to cover the rental, staff and overhead costs. It turned out to be much harder than I thought. For 4-5 months I was working 14 hours a day, 7 days a week (like back to Phase 1!) to set it up and resolve initial operational issues. I kept asking myself, what was I doing, I should had just relaxed and enjoyed my kids now!
Anyway, my kids survived 4-5 months of "letting go" and "neglect". It was good to test the limit!
Around that time, I also decided to stop zeolite and see whether it would affect him. In the last 2 years, the longest period we stopped detox was about 3-4 weeks, as his body's detox function was probably completely dysfunctional and I usually saw the negative impacts of fairly quickly after stopping zeolite. However, this time, he was able to stop for about 3 months. By the 3rd month, his attention declined, he became crankier, impatient and cried more often. The school teacher also told me that he seemed less interested in reading and was having some difficulties in grasping the concept of word sounding and blending in the last 1-2 months.
Before resuming detox, I would like to rule out other possibilities. It could be that my son's crankiness and lack of interest in learning were due to the "neglect" he suffered in the last few months. So, I reduced the opening hours of the shop, took regular time off from work and made efforts to spend more time with him. It was his mid-term school break and I sent him to daily speech therapy for two weeks, to work on his word sounding and blending, and asked the therapist to do a formal assessment of his overall learning and development. I also sent his hair for another test.
His learning did not progress much from the daily speech therapy. He learned a few new things reluctantly but was upset and cried when the therapist told him to focus better when he got distracted. After about 7-8 sessions of speech therapy and spending a lot of time with him, I drew the conclusion that his issues were not emotion-related. So I started him on zeolite again and increased his zinc and magnesium intake slightly.
Within days, his body relaxed, he became happier and more patient, and to our pleasant surprise, mastered word sounding and blending within a week or two. His curiosity on learning also came back and he asked "why this why that" about everything. Instead of reluctantly doing his reading or writing, he would proactively bring books to read, write his own stories and was very proud to show off his work to everyone.
The formal development assessment I requested from the speech therapist were done in two parts. The first part of the assessment was done before we resumed detox and adjusted his essential minerals. The second part was done 2-3 weeks after it. There were obvious and consistent differences in the scores prior and after. On a scale of 100, the scores of “after” were consistently about 10 points higher than those of “before”. These experiences again reinforced my belief that addressing the underlying biological issues are fundamental and a lot more cost-efficient than doing therapies.
Overall, his formal development assessment confirmed that he is on the right track, and every area of his speech and cognitive development fell within the range of normal distribution. We still have some work to do on his pronunciation, like differentiating “cloud” and “crowd” (which I can’t do myself either). His school has a higher standard of English, so I continued to let him have once-a-week half-an-hour speech therapy to improve on these areas. Also, next year, when he moves to a higher class, he would have to start doing homework, so it would be good to start preparing him a bit more, given his later start than other kids. Chinese remains an area that I had not given too much emphasis and I am hoping to be able to slowly pick this up.
The hair test results came back and showed that he had some heavy metals, arsenic mainly, which I suspect came from the pesticide used in mosquito fumigation in the environment. The amount was however much less than what he would have built up based on the trend from previous tests, indicating that his body detox function is probably partially working and able to remove some toxins by itself, but not all, in the last few months. Unlike in the past, he did not have much lead, cadmium, mercury or aluminium now, indicating perhaps we were able to minimise his exposure through careful selection of food ingredients and cooking utensils or his body was able to remove these. His zinc and magnesium remained low, which reconfirmed the observations I made earlier.
On the soft skills, I did not do a formal assessment. But based on feedback from teachers, people who interact with him and my own observations, I think he would fall into the typical range of his age too. He can engage actively in long and dynamic conversations, two- or three-way (between him and the sister and me), which sometime flip-flopped from current activities, to planning for tomorrow, to relating to past experiences, in split seconds. He understood social norms, was able to correlate information he heard and read from different sources compared against actions he saw, spot inconsistencies and question rules. He shows more empathy and affection than his 10-year-old neurotypical sister but could also differentiate what level is appropriate or not. He has his own taste and preferred choice of clothes, colours and hairstyle and wanted to be like other boys of his age. He is starting to develop a stronger sense of pride in his work and himself, and can be sensitive and feel hurt in some situations, but is able to express his emotions and ask for a hug and kiss to make him feel better.
When I started on the interventions, I had a mindset of getting over it quickly and back to my "normal" life. However, as things unfolded in the last few years, I learned more about nutrition, chemicals in the environment, and the flip side of medication, and better understood my family's genetic disposition of a sensitive immune system. I started to appreciate the benefits of alternative therapies. I enjoy applying ABA or RDI principles when applicable, to help shape the character and core values of my children, and develop closer bonding with them.
Paying careful attention to what we eat and are exposed to becomes part of a healthier lifestyle, like exercising. It is ok to slack sometimes, but I don't want to go back to the previous lifestyle anymore. I don't feel deprived as it is more of a choice of an alternative lifestyle, not an intervention need now.
Also, when I first started, I had a lot of reservations on supplements. Perhaps because they came in a bottle and resemble medication. But as I learned more about nutrition and chemicals, I found it cynical that in the past, I never questioned what went into the food - harmful chemicals and additives and chemicals/metals leeching from equipment and packaging materials. I didn’t question the pesticides in food. I didn’t question the cook on what ingredients he used when I ate in a hawker centre or in a restaurant. I didn’t question the long list of things added into my kids’ formula which they drank in huge quantities since birth, or cereal enriched with vitamins. A lot of the food or personal products I bought off the shelf, I didn’t check on the artificial ingredients and just assumed they should be safe if they are sold in supermarkets. I didn’t give any second thought about artificial fragrance, which is so pervasive in our current environment. But suddenly, why was I becoming skeptical about nutrients extracted from natural ingredients, with clear labels and descriptions of sources and manufacturing processes? We all tend to be skeptical about the less risky things that are transparent but ignorant about more risky things in disguise. As I uncovered more and more things in the food and the environment that hamper the functioning of my son, I realised that ignorance is not bliss anymore. I started taking more supplements myself and for my daughter too, as I realised now, the environment we live in and the food we eat today is not the same as my parents' generation anymore.
My desire of "ending" the journey has dissipated. At this stage, I want to slowly “let go” of my children as they grow, learn from their own mistakes and develop their own identity, but I don’t set a bar for them anymore. As I know, our family is very sensitive to chemical exposure and there may be things I cannot control down the road. I don’t want to spend my life worrying about what could happen in the future. I have done what I can control and I am learning to let go of what I don’t have control.
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Dr. Jerry Kartzinel, an American world renowned DAN doctor (Jenny McCarthy's DAN doctor) and a father to a severely autistic boy (still is autistic until today) said, “Children who just go on the GFCF diet and basic supplements and are essentially free from the autistic traits are the so-called 'Lotto winners' of autism. While there are such people, there are not many, certainly not common. Dietary interventions are normally just the beginning of a road to recovery. For some, there may be 5 more steps ahead and others, 99 more steps ahead, before they could be somewhat near there.”
But a journey of a thousand steps begins with the first.
See also:
• What is Biomedical Treatment?
• Recovered from Autism: Maya Viktoria
• Pesticides and Autism
Several things impressed me about this story. Gillian said, "There was a possibility that if we did not do enough to move him from 'non-verbal' to 'verbal', he may be non-verbal for the rest of his life." That really made me go 'wow!'. I see far too many parents who say, "Oh, maybe he'll grow out of it." But no, Gillian knew exactly what was going to happen if she did nothing and she took the bull by the horns. I take my hat off to her. All parents should be like this.
Secondly, Gillian is very systematic and analytical. She assiduously recorded every intervention and every result, and she even tested the efficacy of the interventions by stopping them and then observing whether her son regressed. In some cases, she even had tests done, with solid numbers for before and after. By doing this, she was able to determine which intervention worked, in what way and how well it worked (or not). She approaches treatment methods like someone who is conducting research (something which should be done but no-one wants to fund it). I like the way she approaches things because I am a researcher by training and my brain also runs along the same track. In autism, the same symptoms in different children may be caused by different things, so the best doctor really is you - the parent. In this, Gillian did an outstanding job by pinning down the exact cause of every problem that her son had. She also confirmed something that I had long believed but could not prove (because most parents do biomed and therapies concurrently, so you can't tell which was having a greater effect) - that treating the underlying biological issues is more effective and cost-efficient than doing therapy. There - I knew it!!
This story was originally posted in KLbiomed.
My 3-year ASD Journey
by Danny's mom
Sep 5, 2009
April 2009 was our 3rd year on the ASD [Autism Spectrum Disorder] journey. Have been doing a lot of reflection lately. Thought it might be good to summarise some of the highlights and lowlights, for the reference of other parents starting the journey.
The 3 years can be broadly categorised into 3 phases -
Phase 1: Kick-starting (first 8 months) - Daily monitoring
Phase 2: Optimising (subsequent 21 months) - Weekly review
Phase 3: Character Building - Letting go
Phase 1
My son was born with ASD, so his biological issues were perhaps more severe than most of the other kids who regressed later. He didn't have any speech or shared attention since birth. The initial tests we did on him also showed that his biological system was a total mess, and the healing process for him perhaps would require a much tighter diet and take a longer time than what other kids would require.
Pre-phase 1 (pre-diagnosis): Life was very challenging due to my son's hyperactivity and sleep disorder. He was rejected by his school and we could not take him to public places as he would pull things from the shelves and run towards cars. He had unusual strength, and under fear, could be even stronger than adults. He was a very fussy eater, only ate a few types of food and craved yoghurt and juices non-stop. He had a lot of sensory issues and was very particular to touch and sensitive to loud noises. He would pick up small objects and put them into his mouth to chew. It was very stressful to always keep an eye on choking hazards. Eating out was not easy either - he wouldn't sit still. There were a few incidents when he bit off the plastic spoons and swallowed the pieces and I had to rush him to A&E [the Accident and Emergency department]. Also, he did not sleep well and woke up many times at night. I was exhausted after 2.5 yrs of sleep deprivation, with a full time day job. It is also very heart-aching to see my child totally unaware of the world around him. He did not have emotional bonding with anyone, stimmed on strange things and was not able to learn any basic skills like toilet-training, self-feeding, not even putting on or taking off of shoes. In addition to that, the out-of-the-blue sudden outbursts of laughter or screaming was very disturbing to me.
Realising my son had ASD was shocking, but on the other hand, a relief for me. At least I knew what were the problems, rather than wondering what was wrong all the time. I did not spend too much time asking “Why me?”, I just picked myself up from rock bottom and started to read books, talk to other parents and research on the internet to see what could be done to improve the situation.
My son started intervention at 2 yr 4 mths old. Phase 1 was the most intense period, although it was short.
It was physically and financially very demanding. I dealt with it as a "crisis" period, where I had to drop everything else I can drop to focus on this single issue in my life for that moment. No leisure activities, no personal time, and I also had to let go of all extra-curricular activities for my daughter, who was 6+ at the time.
We just did the bare minimum for everyone to survive, and daily life during this period revolved totally around the intervention needs for my son. I also put in extra hours, slept very little, perhaps only 4-6 hrs daily. I am not sure whether it was a wise strategy, but based on what I saw in my son at the time and based on the challenges that the therapists faced in working with him, there was a possibility that if we did not do enough to move him from "non-verbal" to "verbal", he may be non-verbal for the rest of his life. So I was very much driven by fear at this phase and was willing to trade everything to get him to speak and function better.
Looking back, perhaps it was the right thing to do. Although I have to compromise in some areas of my daughter's development (like Chinese, music, dance etc.), to me, it is better to have two happy average kids than having a huge gap between the two. And it turned out to be better than what I thought the worst-case scenario would be. The bonus is that my daughter learned to be more independent. By the age of 7, I did not have to monitor her homework and I didn't even know when her exams were anymore as she was very much self-managed in her studies.
Based on books I read, I decided to work on intensive ABA [Applied Behavioural Analysis] immediately and dietary interventions (GFCF - Gluten-free, casein-free diet) in parallel, starting in Month 2. Due to the location we lived in at the time, we used an ABA therapist from Australia who came in once in two months for about a week and gave us some coaching on how to do ABA ourselves. Later, I found a British speech therapist living in a nearby town. She came in every 2 weeks and spent 2 days, and gave us some oral-motor and other exercises to work on. There was no qualified OT [occupational therapist] in the place where we lived at the time, so we did not do much OT [occupational therapy].
At the start of the intervention programme, I had given some thought about what role I wanted to play. I realised I would not have the option to stop working or work part-time, as I need the income to fund the interventions. So I decided that I would be the overall “program integrator/manager" - conserving my time on reading and talking to other parents, comparing the pros and cons of different interventions, analysing his daily progress, telling the different therapists (ABA, speech) what areas to focus on and adjusting his diet and supplements. I recognised I needed help in other areas like sending and picking up the kids, shopping for ABA toys/cooking ingredients, trying recipes, clocking enough DIY ABA therapy hours, etc., so I arranged for as much help as I could, including paying relatives and friends. Even my colleague's teenage daughters were hired to help. These gave me some occasional breathing space to spend more time thinking on the next steps rather than being totally tied up with the execution of the ongoing interventions.
In Phase 1, however, I was very closely involved in the day-to-day interventions, despite not doing everything myself. We used a daily log, treating the situation like in ICU, as I needed round-the-clock data to adjust the treatment. Whoever was spending time with my son, whether a therapist, a domestic helper, family, even my 6-year-old daughter, had to fill in the daily log on everything - from what he ate, bowel movements, where he went, how he behaved, what words he said or things he did. I would review the log at the end of the day and based on the analysis, gave instructions for the next day - what food/supplements to adjust, what words/areas to focus on.
Moving from non-verbal to verbal was the biggest hurdle in the whole journey. It took every drop of energy we had to get this toughest nut cracked. It took 6 weeks of intense ABA, about 3-5 hours daily, to get the first word out of him, in parallel with GFCF. Speech was so difficult for him. After a cumulative 130+ hrs of ABA therapy, hearing the first word "O" (for open) was like a miracle to us. It was lucky that we didn't judge him from what he could not do and chose to believe he had more potential than what his physical symptoms manifested at the time. At one stage, the therapists suggested that he might have apraxia and not likely to be able to speak properly, and asked us to switch to PECS [Picture Exchange Communication System] instead.
I reckoned my son's condition was a lot more serious than others, as in many other cases I have seen in the past few years, most ASD kids learn speech fairly quickly with GFCF diet and some ABA. For those who have a higher hurdle, overcoming the inital speech barrier can be very draining and needs a lot of sacrifice, but for us, the transitional sacrifices were worth it as thereafter, things become easier. As my son learned to request what he wanted, he became happier and more affectionate.
After 2 months on ABA and GFCG, my son had a vocab of some 60-70 single words, and was quite easy to take care of. It was a relief and I decided to take him to Kuala Lumpur to do a "thorough check". Like many parents starting the journey, I thought the doctors knew all the answers. The specialist we consulted in a private medical centre was also supposedly doing biomed. [My note: There were no proper biomed doctors in Malaysia prior to April 2010.] She prescribed a full range of tests - urine, blood, CT scan and many other tests that I could not remember the names. The bill came to RM10,000 [that's 6 months' salary for the average person!] in total. When the test results came back, she suggested ABA and GFCF, which we were already doing. My first lesson was that I could not rely on doctors to help my child - and an expensive one!
Discovering the impact of salicylates was another major milestone. The effect of salicylates on ASD kids is not very well recognised in the US ASD and DAN [Defeat Autism Now!] communities (perhaps because it is difficult to practise?), so at the beginning, I thought doing GFCF would be adequate. Although I could see my son had calmed down from GFCF and more receptive to teaching, there seemed to be still something else affecting him - sensory issues, stimming, short attention span, and he needed a lot of repetitions to learn new things. There were also a few episodes of sudden bursts into laughter, without any obvious triggers. It puzzled me as the GFCF diet was already very tight.
However, in one of her visits, my Australian therapist told me about a story of a teenage ASD girl who had been on a low-salicylate diet for a long time. One day her mom allowed her a little diluted apple juice when eating out, and suddenly she felt she lost control of her body and acted strangely. Another story my British speech therapist told me on another occassion, was an ASD boy who ate a lot of corn and always knocked his head on the wall. One day his mom started to make a connection that all his favourite foods are yellow and suspected corn. She took out corn and the child stop knocking his head and started to interact more with others. The two separate stories intrigued me and I googled to find out more. I discovered there is a lot of documentation and many testimonies of the benefits of a low-salicylates diet for ASD, ADHD and Asperger kids in UK and in Australia. So I decided to give it a try.
We first eliminated the artificial forms of salicylates, like preservatives, artificial colourings, artificial seasonings, MSG, etc. After a few weeks, we eliminated the natural forms of salicylates in food as well. Within a month, my son made a leap in his learning abilities. He was already learning some 8-9 new words a week with intensive ABA and GFCF before that, but the more salicylates we eliminated, the faster he learned. After 2-3 months, he was learning 30-40 new words a week without the need for ABA. We only did some oral-motor exercises to strenghten his oral muscles and correct his pronunciations. I realised that my son's learning capability was largely affected by salicylate exposure.
Around that time, through the introduction of another friend, I found a parent in Europe who had a child recovered through GFCF, no-corn and low-salicylate diet. I talked to her on the phone and described my son's conditions to her. She reassured me to keep doing the diet 100% and suggested I start him on supplements. In Month 5, after a lot of hassle with the customs, I finally managed to get hold of some supplements from US and started my son on SNT [Super Nu-Thera], fish oil, probiotics, essential minerals and amino acids. He continued to make more and more progress as we added the supplements. Most of his ASD traits have diminished and he looked and behaved just like other kids in public.
By his 3rd birthday, after 8 months of intervention, I felt I could slow down the pace. He was functioning ok, toilet-trained, self-feeding, self-dressing, talking in short sentences of 3-4 words, answered simple questions and did not have any behavioral issues or sleeping problems anymore. We were on our way relocating to Singapore.
Phase 2
My son started school for the first time at 3 yr 1 mth. During the school interview and doctor check-up, I just said he had a speech delay because I wanted to see how he coped without the label. Neither the school principal, teacher nor doctor suspected anything when they saw him briefly, for 20-30 minutes. Partly because I was exhausted and needed a break to deal with the transition and settling into a new job and partly because I wanted to experiment to see how he could cope without interventions, I decided to take a break, stop all the therapies but maintain the diet and basic supplements for 4 months.
As I knew he is very sensitive to salicylates, I started to give him Phenol Assist when he went to school, and started to change all his personal products and home cleaning products to low-chemical, unscented types.
Blending into the large group setting in school without any support (the school refused shadow aides) was another major hurdle for my son. While he was fully verbal and very chatty at home, he didn't feel comfortable speaking much at school. I was busy with my new job and settling in at that time, so I didn't spend much time observing him at school and had much less interaction with him after work as well. Also, as he had not been in school before, his body did not have immunity against a lot of germs, so he fell sick every few weeks and we had to give antibiotics in one of the more serious infections. It was a very unhappy time for him as he started to shut in and would play on his own at school. At home, he still talked a lot, so I didn't realise what was happening at school. There were however, some signs that made me feel something was not right. He became emotionally more insecure, would follow me everywhere at home, even cried outside the door when I was in the shower.
In hindsight, perhaps I should have arranged for a more gradual transition, like starting few days of school blended with alternate days of one-to-one therapy for him and spent more time observing him in the new environment. But as he was young and relatively high-functioning, I felt there would be time to catch up, so I wanted to see what would be the extent of issues he would have had without therapies, to pitch on the level of investment. Also, as I had worked extremely hard in Phase 1, the lack of sleep/exercise, lack of personal time and unhealthy diet for 8 mths had taken a toll on my physical and emotional health, so I needed some time out to "repair" myself, to continue the journey.
In Phase 2, I didn't do daily logging and analyses of my son anymore. I still observed him closely when I spent time with him, made mental notes on my observations and at the end of the week, I would record the new things we tried and observations we made, in the log. Every few weeks, I would look through the past record, trying to see a pattern in random events and decide what next to try or adjust. I had a lot more free time for myself and my daughter and working on my son's intervention was not really a lot more demanding than raising a normal child. The main challenges remained finding enough food varieties and ensuring a continuous supply of his favourite foods.
After 3 months in the school, his class teacher started to pick up clues that he was different from other kids, and suggested he start one-to-one therapy with a SLP [Speech and Language Pathologist] at school, 3 times week, half an hour each.
I also decided to do a hair test for him and it showed that his zinc and magnesium levels were low, but had a lot of heavy metals. We started zeolite when he was 3 yrs 4 mths. I did some reading on various manipulative therapies, like JSJ [Jin Shin Jyutsu (acupressure)], NAET [Nambudripad's Allergy Elimination Techniques], Braingym, CST [Cranio-Sacral Therapy] and decided to try CST on him a month later.
Zeolite had a profound impact on him immediately. Within few days, he became more spontaneous, had fewer tantrums, was more patient, constructed longer sentences and had more more pretend play. CST also helped him. The effect was less visible but he started to name more of his friends at school and was emotionally more stable. But around the same time, we also increased his amino acids and introduced digestive enzymes, so I could not pin down exactly which contributed to what.
At one stage, his stimming suddenly increased a lot and his attention started to decline. One day, to my horror, I found out that I have been buying the wrong juice for him for the last 6 weeks. It was pomegranate mixed with grape juice, which had a similar label as the pure pomegranate juice. [Grapes contain natural salicylates.] I removed it immediately and the stimming started to subside. The negative effects lasted another 3-4 weeks before the salicylates were purged out of his system. A small mistake on my side in not reading the label carefully resulted in increased stimming for about 2.5 mths and a more distant child. But luckily, the issues dissipated after the culprit was removed.
Around that time, I convinced myself to give DAN doctors another chance, as I didn't want to draw my conclusion based on one single bad experience. The DAN doctor recommended an Organics Acids Test (OAT) and based on the results, suggested a few supplements. Supplements like co-enzyme, vitamin C and B-complex helped him a bit. However, one of the recommended supplements, chromium picolinate, caused him to run around in the supermarket, which had never happened since we started GFCF 1.5 yrs ago. He then lost his appetite totally for a week. I stopped the supplement immediately and the side effects diminished. This second bad experience made me realise that DAN doctors, especially those without ASD children of their own, are not any more knowledgeable than parents and were probably making poorer judgements than parents, as they are a lot more remote from the issues of ASD kids and were making wild guesses based on very superficial description/stories they heard, or from the results of some tests which are not foolproof. If it is going to be experimental anyway, I would rather experiment myself, as my priority is always the health of my child. For someone else, the interest may be more to prove a theory or make more money.
Although his speech development has improved with zeolite, amino acids and enzymes, there still seemed to be some things that affected him biologically, which I could not pin down. He did not like sit-down activities like colouring, crafts, etc. He could only sit for a few minutes, constantly distracted by other things in his surroundings. At that time he was nearly 4 years old, and from the positive results I saw from zeolite, I felt more comfortable to increase the dosage slightly but still keep it lower than the recommended dosage.
I also decided to try DMG [dimethylglycine - a type of amino acid] after talking to a few parents who had seen positive results, and a lot of reading on the pros and cons. DMG had a profound impact on his attention - it was like someone turned on a switch in his brain. Suddenly, he was able to focus better in sit-down activities, started to be interested in board games and could sit down to finish one full round of snake and ladder game with his sister, and started to use more abstract descriptions in his speech. The low dosage of supplements, which cost little, gave him a lot more gains in a week than the last 6-7 months of 3 times weekly speech therapy at school. We also put him in a children’s group music class in those few months, but without addressing his biological deficits, he could not fit into the music class well and the money and time invested was mostly wasted.
After 9-10 sessions of CST [craniosacral therapy] in the last 6 months, I didn't see further improvements and decided to stop. I have heard a lot about RDI [Relationship Development Intervention] and was contemplating trying it. However, as I had a full time job and travelled occasionally, I would not be able to commit to the time requirement for RDI. I decided to DIY, just read some books and articles and made a conscious effort to integrate the principles of RDI into my daily interactions with my kids. It was hard to change to using more declarative language than imperative language, but as in any new thing, after a while it became more natural. I think it did help him in subtle ways, and it was good for family bonding.
The other pieces of the puzzle for my son were the reactions he had occasionally from exposure to smell and touching of chemicals/fragrances, etc., and some uncomprehended fears. Sometimes, after playing in the pool, he would have more stimming. Or sometimes, after taking a ride in a taxi with a strong air freshener, he would be more moody. Though he was doing well, there were still some subtle things that set him apart. His tone of voice was slightly different from other kids, although not very obvious. He sometimes still got a bit over-excited about things he liked. Were these part of him or was something else affecting him? I was rather lost.
Doubting whether I was on the right track, I called up my friend in Europe again and went through the list of supplements I used. She reassured me these issues would not be the permanent features of the child - her daughter went through these as well. She told me to keep doing the diet 100% and suggested I try No Fenol and Candex. I told her that I was already using Phenol Assist. As for Candex, the test did not show any yeast, and most books I read were using Diflucan/Nystatin [for yeast]. I was reluctant to add more supplements but she told me she that did not want to use pharmaceutical products like Diflucan/Nystatin on her child, and No Fenol and Candex were critical for her daughter's recovery. No harm trying as they are natural ingredients, and tests are not always accurate.
After some reading and research, I did not come across any cases of severe reactions from No Fenol or Candex. There was nothing to lose, so I decided to give them a try anyway. I stopped Phenol Assist and started on No Fenol first. My son was 3 yrs 10 mths then.
Around the same time, as we have stopped craniosacral therapy, I wanted to explore another type of manipulative therapy as these are practically risk-free. I was thinking of trying Braingym and MNRI [Masgutova Neurosensorimotor Reflex Integration method], but the logistics were not convenient for me. Besides, I don't like doing manipulative therapy at home as I am very bad at skills that require precision. One day, I read about Innate NSA [Network Spinal Analysis] in the Expat Living magazine, and was intrigued by the feedback given by others. As the location is very near to our place, I decided to give it a try. The doctor recommended that the parent and child be treated together, so I started it on myself too. Although the touch was very gentle, I felt the impact it had on my body in the first few sessions. For my son, it was difficult to keep him still on the therapy table for 10-15 minutes initally. But after a few sessions, he seemed to enjoy it and would go onto the table by himself without my company.
The first few weeks of NSA, there was a lot of release of "past traumas" from my son, and later, myself too. It seemed like NSA somehow released the deeply-ingrained trauma in the body, and we went through a phase of ventilation - tearful, moody, body-aches, but luckily, it wasn't at the same time. His effects came out first and were shorter, perhaps because he is much younger, and mine came out few weeks later, probably because they were much more deeper, and for a much longer period. It was a challenging phase but it was well worth it.
These new measures - DIY Relationship Development Intervention, No Fenol and Network Spinal Analysis have helped my son tremendously. He did not react much to incidental chemical exposures like smells, pool chemicals and touch (colours) anymore. The "uncomprehended fears" that he displayed from time to time in the last few years disappeared. He became happier - better at regulating his emotions, more affectionate and developed closer bonding with those around him. He had more interest in learning - his interests broadened and he started to like watching the Discovery Science Channel. He was more sociable - the tone of voice became very lively and natural and he started to display a more cheeky and playful side of his character.
For 3+ months, he just made more and more progress daily without us doing much apart from the diet, supplements, and once-a-week NSA session. Later, we decided to let him do once a week speech therapy to help correct some pronunciation. He tends to pronounce the sound "l" as "n".
After seeing a lot of progress from him in the last few months, I became complacent and thought I could cut down the supplements and gave him some food containing salicylates. He was ok for a week or two, but after that, the deficiencies of key nutrients and intake of salicylates started to affect him. His attention declined, stimming returned and he started to shut in and play on his own. I had to accept that his body still needed more time for healing. We tightened the diet again, went back to the full supplementation regime and within 2 weeks, he was on track again.
The next 4-5 months was smooth sailing. He just made more and more gains daily with the tight diet and broad variety (but low dosage) supplement regime. We did another hair test again and tuned his minerals based on the results, which helped him a lot. His toxins had gone down significantly after a year on low dosages of zeolite (on and off).
He was emotionally very stable, started to write alright, was able to express emotions and show empathy, talked regularly about his school and friends, paid attention to how others did things and imitated well. He was more willing to try new things, was able to sit down for a 90-minute movie and focused well. He also started music class and gym class. This time around, with his biological issues addressed, he was able to participate in the class very well. I was in most of the 8-10 sessions of group classes with him and comparing him with other normal kids, I could not tell him apart anymore. He was 4 yrs 8 mths old.
Around that time, we did a blood test to check his liver and thyroid functions, and B12 and iron levels. This was after about 2 years on various supplements. He did not cry while watching the nurse poke the needle, unlike 2 years ago. However, after that, every time we went to the medical centre, he would ask, "No injection?"
The test showed his body functions were ok, in fact, most of the results looked better than 2 years ago and most indicators are in the middle of the normal range, unlike previously - more at borderline of the range. The test showed his iron was slightly low, perhaps because he doesn't like vegetables and red meat like beef and lamb. I added a small amount of iron to his regime. For B12, it was on the slightly higher end of the range, so I decided to stop the B-complex. He was a little tired the first few days we stopped the B-complex, but after that, the body adjusted and he was alright without it. We gave him a small box of rice milk enriched with a little B12 daily to bring to school so that he would still get some small amount of B12 through food.
I felt more confident that he was on the right track and decided to introduce Chinese classes to him. He also started regular swimming classes and enjoyed it (we tried a year ago but he was not ready). He started to enjoy sports like ball games and gym more, and had better stamina in outdoor activities and better coordination. We also started to let him practise on writing and numbers. A year ago, he was not ready and not interested. I did not want to push too much at that time as I preferred to address the speech and social aspects first before addressing academic development.
It seemed that we have tackled all the major pieces in his biological puzzle by now. The remaining one was the medication. In the last 1.5 years, with detox, probiotics and vitamin C, he hardly got sick, unlike before. We did not have to use antibiotics for him since he was 3 yrs 4 mths old, around the same time he started detox. He would only get an infection like once in 4-5 months, and usually only had mild fever with no cough/sinus problems associated with it. I had switched him from children’s paracetemol to crushed white Panadol [paracetemol] tablets due to the concern of salicylates and artificial ingredients. He did not regress from the Panadol tablets, however, every time after taking it, he would wet his bed for a few nights. I suspected the gluten/corn in the starch of the tablet affected him. After consulting a naturopath, I decided to switch to a homeopathic, alcohol-free remedy for fever and it worked well for him, without any side effects.
Around July/August 2008, I decided him to move him to a larger school. Recalling the negative experience my son had in settling into a new school a year and a half ago, I was a lot more cautious this time around and was prepared to take time off to accompany him in the first few weeks to settle in. But the transition was smooth sailing this time around. I only took him to see the school and met the teacher once, and on the first day of school, he just took the school bus by himself happily. After a week, he was able to walk from the school bus to the classroom by himself, which was quite a long walk as the school is large, and his class was on 2nd storey at the end of a long corridor. His 9-year-old sister joined the same school two weeks later and he asked her, "Do you want me to bring you to your class?"
He also blended in well with his peers in class and enjoyed school very much. Every day, he would tell me things about his school, who his best friends were, who had been mean, what were the new things happening in school...
Everything seemed to fall into the right place by now. It was Month 29 on the journey.
One more thing to try - I remembered what my friend told me about yeast. I didn't restrict sugar intake for my son, and he did like sugar. So I gave a try on low dosages of Candex. There were very mild die-off effects - very subtle - he just became slightly crankier for a week or two. Thereafter, he made further gains. Again, very subtle. Perhaps his yeast issues were minor. He paid more attention to subtle clues in conversation, was sharper in observing inconsistencies, made comments about hairstyle/clothes, there was more risk-taking and he grasped more complex concepts.
Phase 3
Last part of the story. This was written in April 2009 [5 months before]. Since then, I have made further changes to my son's supplement regime and he made further gains. When I have time in the future, I will do another update.
It is now Phase 3. I finally feel that he is indeed on the right track, and I have a good understanding on most of the major biological factors affecting his functioning. Although I still need to keep an eye on his development, adjust his supplement regime and watch his exposure to chemicals, the frequency and requirement of my attention is much less now. Instead of reviewing weekly, I can now check on him on a monthly or less frequent basis.
Around that time, as his school hours extended to afternoon, I needed more food options for him and I wanted his food to look more like his peers’. So I started searching and ordering online and later, for economy of scale, I searched for more people to join in on the orders. I also started to get more equipment to make different varieties of food for him. After a while, I realised that instead of spending hours to make one food, invest thousands in equipment or pay several hundreds on shipping costs for one or two people, it made more sense to do it at a larger scale, and the idea of setting up a GFCF shop was conceived.
I had a lot of hesitation on setting up the shop as it would mean taking away a substantial amount of my free time from the children for a while, and I had reservations whether the small demand would ever be able to cover the rental, staff and overhead costs. It turned out to be much harder than I thought. For 4-5 months I was working 14 hours a day, 7 days a week (like back to Phase 1!) to set it up and resolve initial operational issues. I kept asking myself, what was I doing, I should had just relaxed and enjoyed my kids now!
Anyway, my kids survived 4-5 months of "letting go" and "neglect". It was good to test the limit!
Around that time, I also decided to stop zeolite and see whether it would affect him. In the last 2 years, the longest period we stopped detox was about 3-4 weeks, as his body's detox function was probably completely dysfunctional and I usually saw the negative impacts of fairly quickly after stopping zeolite. However, this time, he was able to stop for about 3 months. By the 3rd month, his attention declined, he became crankier, impatient and cried more often. The school teacher also told me that he seemed less interested in reading and was having some difficulties in grasping the concept of word sounding and blending in the last 1-2 months.
Before resuming detox, I would like to rule out other possibilities. It could be that my son's crankiness and lack of interest in learning were due to the "neglect" he suffered in the last few months. So, I reduced the opening hours of the shop, took regular time off from work and made efforts to spend more time with him. It was his mid-term school break and I sent him to daily speech therapy for two weeks, to work on his word sounding and blending, and asked the therapist to do a formal assessment of his overall learning and development. I also sent his hair for another test.
His learning did not progress much from the daily speech therapy. He learned a few new things reluctantly but was upset and cried when the therapist told him to focus better when he got distracted. After about 7-8 sessions of speech therapy and spending a lot of time with him, I drew the conclusion that his issues were not emotion-related. So I started him on zeolite again and increased his zinc and magnesium intake slightly.
Within days, his body relaxed, he became happier and more patient, and to our pleasant surprise, mastered word sounding and blending within a week or two. His curiosity on learning also came back and he asked "why this why that" about everything. Instead of reluctantly doing his reading or writing, he would proactively bring books to read, write his own stories and was very proud to show off his work to everyone.
The formal development assessment I requested from the speech therapist were done in two parts. The first part of the assessment was done before we resumed detox and adjusted his essential minerals. The second part was done 2-3 weeks after it. There were obvious and consistent differences in the scores prior and after. On a scale of 100, the scores of “after” were consistently about 10 points higher than those of “before”. These experiences again reinforced my belief that addressing the underlying biological issues are fundamental and a lot more cost-efficient than doing therapies.
Overall, his formal development assessment confirmed that he is on the right track, and every area of his speech and cognitive development fell within the range of normal distribution. We still have some work to do on his pronunciation, like differentiating “cloud” and “crowd” (which I can’t do myself either). His school has a higher standard of English, so I continued to let him have once-a-week half-an-hour speech therapy to improve on these areas. Also, next year, when he moves to a higher class, he would have to start doing homework, so it would be good to start preparing him a bit more, given his later start than other kids. Chinese remains an area that I had not given too much emphasis and I am hoping to be able to slowly pick this up.
The hair test results came back and showed that he had some heavy metals, arsenic mainly, which I suspect came from the pesticide used in mosquito fumigation in the environment. The amount was however much less than what he would have built up based on the trend from previous tests, indicating that his body detox function is probably partially working and able to remove some toxins by itself, but not all, in the last few months. Unlike in the past, he did not have much lead, cadmium, mercury or aluminium now, indicating perhaps we were able to minimise his exposure through careful selection of food ingredients and cooking utensils or his body was able to remove these. His zinc and magnesium remained low, which reconfirmed the observations I made earlier.
On the soft skills, I did not do a formal assessment. But based on feedback from teachers, people who interact with him and my own observations, I think he would fall into the typical range of his age too. He can engage actively in long and dynamic conversations, two- or three-way (between him and the sister and me), which sometime flip-flopped from current activities, to planning for tomorrow, to relating to past experiences, in split seconds. He understood social norms, was able to correlate information he heard and read from different sources compared against actions he saw, spot inconsistencies and question rules. He shows more empathy and affection than his 10-year-old neurotypical sister but could also differentiate what level is appropriate or not. He has his own taste and preferred choice of clothes, colours and hairstyle and wanted to be like other boys of his age. He is starting to develop a stronger sense of pride in his work and himself, and can be sensitive and feel hurt in some situations, but is able to express his emotions and ask for a hug and kiss to make him feel better.
When I started on the interventions, I had a mindset of getting over it quickly and back to my "normal" life. However, as things unfolded in the last few years, I learned more about nutrition, chemicals in the environment, and the flip side of medication, and better understood my family's genetic disposition of a sensitive immune system. I started to appreciate the benefits of alternative therapies. I enjoy applying ABA or RDI principles when applicable, to help shape the character and core values of my children, and develop closer bonding with them.
Paying careful attention to what we eat and are exposed to becomes part of a healthier lifestyle, like exercising. It is ok to slack sometimes, but I don't want to go back to the previous lifestyle anymore. I don't feel deprived as it is more of a choice of an alternative lifestyle, not an intervention need now.
Also, when I first started, I had a lot of reservations on supplements. Perhaps because they came in a bottle and resemble medication. But as I learned more about nutrition and chemicals, I found it cynical that in the past, I never questioned what went into the food - harmful chemicals and additives and chemicals/metals leeching from equipment and packaging materials. I didn’t question the pesticides in food. I didn’t question the cook on what ingredients he used when I ate in a hawker centre or in a restaurant. I didn’t question the long list of things added into my kids’ formula which they drank in huge quantities since birth, or cereal enriched with vitamins. A lot of the food or personal products I bought off the shelf, I didn’t check on the artificial ingredients and just assumed they should be safe if they are sold in supermarkets. I didn’t give any second thought about artificial fragrance, which is so pervasive in our current environment. But suddenly, why was I becoming skeptical about nutrients extracted from natural ingredients, with clear labels and descriptions of sources and manufacturing processes? We all tend to be skeptical about the less risky things that are transparent but ignorant about more risky things in disguise. As I uncovered more and more things in the food and the environment that hamper the functioning of my son, I realised that ignorance is not bliss anymore. I started taking more supplements myself and for my daughter too, as I realised now, the environment we live in and the food we eat today is not the same as my parents' generation anymore.
My desire of "ending" the journey has dissipated. At this stage, I want to slowly “let go” of my children as they grow, learn from their own mistakes and develop their own identity, but I don’t set a bar for them anymore. As I know, our family is very sensitive to chemical exposure and there may be things I cannot control down the road. I don’t want to spend my life worrying about what could happen in the future. I have done what I can control and I am learning to let go of what I don’t have control.
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Dr. Jerry Kartzinel, an American world renowned DAN doctor (Jenny McCarthy's DAN doctor) and a father to a severely autistic boy (still is autistic until today) said, “Children who just go on the GFCF diet and basic supplements and are essentially free from the autistic traits are the so-called 'Lotto winners' of autism. While there are such people, there are not many, certainly not common. Dietary interventions are normally just the beginning of a road to recovery. For some, there may be 5 more steps ahead and others, 99 more steps ahead, before they could be somewhat near there.”
But a journey of a thousand steps begins with the first.
See also:
• What is Biomedical Treatment?
• Recovered from Autism: Maya Viktoria
• Pesticides and Autism