When we brought R home on the third day of his life from the hospital, we knew there was something different about him. He would cry really, really hard and all the other ways we comforted our firstborn did not work for him - except for nursing him. My nerves were frayed that day and I begged my husband to "take him away" for an hour in the middle of the day because I felt like I couldn't handle him. He held R while sitting in our walk-in closet in the dark while I tried to get some - any - sleep. The entire time, he wailed without letting up. Fortunately, I recovered my mind shortly afterward and resolved to do everything I could to meet his needs.
We discovered very quickly that R demanded a lot more physical contact than our eldest. He was the high-touch, kiss-y, feel-y kid. When he wanted our attention, he would hold our faces inches in front of ours and stared lovingly into our eyes while he babbled away. He didn't seem interested in speaking words, which didn't necessarily alarm us as our eldest only spoke at 2 and when he spoke, he could read, but it did concern us somewhat that he wasn't interested in reading at all. He would only hold a book as a joke - deliberately hold it upside down or flipping the pages from the back to the front. We did notice that couldn't get R's attention when he called his name - sometimes up to fifteen times, but we did notice that he was very sensitive to our tone of voice or facial expression. If we looked or sounded angry, then he would scurry over right away. When R didn't need our attention, he would play with his toys independently and didn't need our company. In fact, this was a great relief to us, because our eldest was always, "Mommy, Mommy, Mommy! Come here! Come see this! I want to show you..." I didn't realize then that this is an early sign of ASD.
Weaning R was difficult. Unlike most children who would reduce their milk feeds with the consumption of solid food, he would actually increase the number of feeds. He would demand to be at the breast if he saw that I was seated - on the public bus, train, etc. I didn't mind initially as I nursed my eldest until 17 months. However, the more I permitted it, the more he demanded it. It got so bad that I was probably nursing him 20 times a day and another half a dozen time at night until my husband put a stop to it by bringing me away for a weekend to wean R cold turkey at 20 months.
Like his older brother, the adjustment was quick, but unlike him, R's palate actually narrowed considerably. It got so bad that the only foods he would eat were fruit, bread or crackers with peanut butter, cheese or jam or fruit yogurt. He would also drink tons of milk. Any other food would take him hours to eat - feeding him breakfast would last until lunch, lunch would last until dinner, etc., except for the preferred foods, so we gave them to him, thinking that they were relatively nutritious and healthy. Like most children, he LOVED sweets and snacks, but unlike them, he would cry hard when he saw any left out and continue screaming until he had either consumed it until there was none left or we put it away and redirected his attention elsewhere. We learned to quickly put everything that might tempt him out of sight. We chalked this up to his relatively more intense nature but didn't think much more of it.
However, shortly after weaning, R developed a perpetually runny nose - the nasal drip was slow and clear. We waited several months before bringing him to a general practitioner because he showed no other signs of illness. The doctor quickly pronounced him allergic to the air in Hong Kong and suggested that R is put on Zyrtec (cetirizine) for it, implying that he would need Zyrtec for the rest of his life. That seemed outrageous to me, so I said, "No, thanks" and simply taught him how to wipe his nose. R would also vomit easily. If he cried or got upset - which was often - he would vomit. Since he had reflux as an infant, we thought this was related, even though the reflux had stopped many months ago. He would also have a stomach ache and soft stool at the end of the day, necessitating a long trip to the bathroom before bedtime. Finally, unbeknownst to me at the time, he was actually waking up in the middle of the night with rashes, but he would go to his grandparents' room and my mother would scratch his rashes gently until he fell back asleep.
At 2.5, our youngest was born and while our routine remained unchanged - R attended full-time kindergarten, I noticed over time his increasing aggression towards his younger brother. He would snatch a toy away that his little brother was trying to reach, trip him or run around him in such a way that would cause him to lose his balance and stumble or hit him. Most disturbingly was the way R would focus on his little brother whenever he entered his line of vision - no matter what we were doing together, he would drop his attention from me and aim it at him. I would not be able to get R's attention back despite calling his name multiple times from less than a foot away until he has done something to hurt his brother, at which point he would get disciplined. When he was disciplined, he would cry big fat tears, admit that he was wrong but seemed unable to help himself. I was feeling exhausted from having to remain hyper-vigilant as I really believed that my youngest was in danger at that time.
That said, it wasn't all bad all the time. R really loved pictures. He would stare and stare at pictures in a favorite book for weeks. Then, he'll pick up a pencil one day and start trying to draw them - relatively successfully for a 2yo! Or when he played with blocks, he would build complicated structures that weren't just tall but also wide. We did notice that he tended to repeat things - there were elements in his drawings that were always constant, such as happy faces or his blocks would always be arranged on top of three-wheeled blocks. We didn't realize then that repetitive behavior was another sign of ASD.
When R was 4yo, his kindergarten teacher took me aside and told me that she thought R didn't play at his age level and asked if I noticed. To be honest, I was so focused on trying to prevent any violence in the home that I wasn't thinking along those lines. She asked me to take him to a local maternal and child health clinic for a developmental assessment. From there, they referred us to the Child Development Centre. By then, R was able to speak a few more words but far fewer than children his age. I remember distinctly that after initial tests, he was diagnosed with having just the social aspects of autism in September 2012. However, when the child psychologist observed him and interviewed me in his office in October 2012, he was finally diagnosed with the full range of autism.
I remember very clearly that the diagnosis was given on a Thursday. I spent much of the day in a daze, wondering what was to become of R. Would he be able to go to his brother's school, which was just a block's walking distance from our home or would we have to find a special school? Was there even a special school in English in Hong Kong as English medium schools are all international schools which cater to an affluent and neurotypical clientele? Again, I recovered my wits in time to spend the next day on the internet, search for all the different types of therapies for ASD. Even if they were not available in Hong Kong, I figured we would be able to fly regionally or internationally for treatment. At the very end of my search, I came across mention of the gluten-free, casein-free diet. There were many testimonies from parents and plenty of books written based on anecdotal evidence, but not very much found in the medical literature.
Since the GFCF diet seemed to be something that we could "try at home", I brought the adults in the family together and told them we were going to try this right away. My husband was very skeptical, but when I promised I wouldn't try to change his diet, he reluctantly agreed. We had our first GFCF meal - which isn't too bad in Asia, as we do have a range of rice products, such as porridge and noodles as well as rice, but there were a number of things that we have to watch out for. Most soy sauce now is made with varying amounts of wheat in addition to soybeans, because wheat is much cheaper than soybeans, so the first order of business was finding 100% soy sauce. We stocked up on puffed rice crackers to replace wheat-based bread and crackers. We checked labels for ingredients for everything and discovered that wheat flour was in a range of soups and sauces that the family enjoyed, so we prepared ourselves to make them from scratch with corn flour instead. We replaced animal milk with soy milk, chocolate hazelnut milk or chocolate almond milk.
That Friday evening, R went GFCF and our lives haven't been the same since. We noticed a significant improvement within the first 12-48 hours. He raised his head and responded with "What, Mommy?" when called just once. He made eye contact when spoken to and not just when he was the one initiating contact. He began to use multi-syllable words. He began to explore different patterns and shapes when drawing and playing with his blocks. Before if someone gave R any candy, he would gobble it all down right away. That Saturday morning, I asked his Awana teacher to hold off giving him any snacks as we suspected a food sensitivity. When I arrived, I learned that the teacher put the snack IN HIS HAND and asked him to hold until Mommy arrived to check if he can eat it AND HE DID! This would have never happened before the GFCF diet. R also broadened his palate. He readily ate a range of meats and vegetables - although he still didn't like to chew so we had to cut up the food for him a bit - within a reasonable amount of time. We discovered he could now "overhear" conversations for the first time when two girls sharing a lift with us made a joke and he laughed with them. Before, he could only register what someone has said to him only if the person was speaking at eye level with him. Most importantly, R was a lot less intense and prone to violence towards his younger brother.
What was really surprising was the improvement in a range of physiological symptoms that we did not associate with ASD never mind a food sensitivity. R stopped vomiting, which was amazing for someone who was vomiting at least twice a week. He no longer had stomach aches or loose stools. He no longer had a runny nose. I only discovered those middle-of-the-night rashes I mentioned before when my mother woke up after the first full night's sleep in many, many months surprised that she didn't have to wake up scratch him. Those rashes never came back since we've been on the GFCF diet. Over the next few days, every adult that interacted with him - Awana teachers, Sunday school teachers, kindergarten teachers, etc. - approached us and remarked how muchbetter behaved R was, how he was able to concentrate in class and cooperate better with the other children. Until then, I didn't have an inkling that he was any trouble to anyone else at all! I thought he was only difficult at home!
As parents, we need to be asking our children's teachers and other caregivers much more pointed questions. Don't just ask how they're doing, but does he follow instructions in class or does he require personal attention? Does he look at the person who is speaking in class? Does he play with his peers? Does he respond when you call his name? Teachers see a wide range of students and often don't want to prematurely alarm parents, but it's important to reassure our teachers that we want to partner with them to help our children and not to criticize their teaching methods, assess our child's competitiveness, etc. I strongly suggest volunteering in the classroom to have a better understanding of neurotypical behavior and how best to support our special children in a neurotypical environment. Current best practice is for high-functioning ASD children to remain in neurotypical settings, but the teachers and the classrooms have to be prepared to provide learning support our special children.
Unfortunately, we had to relocate in January to Singapore and with the chaos of the move and the challenging of settling three children in new schools, I didn't have a chance to find additional intervention for R until 6 months later. By then, we noticed that there was not much improvement since the introduction of the GFCF diet. He was speaking more words, but still babbling a lot. He was writing his letters and numbers beautifully, but not arranging them into words. Instead, he would create visually stunning arrangements, using letters as a graphic artist would.
At the same time, we also noticed that R was pulling his ear. I brought him to the family pediatrician who confirmed that he had a glue ear - a blockage in his middle. In fact, the blockage was so complete that it had crystallized. The pediatrician gave me some glycerin ear drops to soak into his ear three times a day for three days, at which I was suppose to remove it. With an aspirator, I sucked a semi-solid coffee-colored mass from his ear, after which, he said, "Mommy, I can hear!" We're always told that our children's ears are self-cleaning, but they're only self-cleaning until they're...NOT. The glue ear not only muffled what he could hear, but was probably uncomfortable and distracting, further delaying his language acquisition. When I mentioned R's glue ear to a friend who is also an experienced kindergarten teacher, she said right away, "Milk allergy, we see this all the time."
We finally found ourselves assigned to the National University Hospital's Child Development Unit at Jurong Medical Centre where we were assigned a wonderfully open-minded hospital pediatrician who connected us with their team of child psychologists, speech therapists and occupational therapists. In September, they conducted tests over three days to confirm R's diagnosis: PDD-NOS, otherwise known as pervasive developmental delay not otherwise specified. Sitting through the expressive speech component of the test with him, it was clear to see how much he struggled with language. This, despite seeing a speech therapist once every two weeks over the course of several months already. However, he surprised everyone with the results of his IQ test, which was well above-average. The pediatrician asked what was my near-term goal for my son. I remember telling her, "I just want to have a conversation with my son."
Unfortunately, the diagnosis arrived too late for R to be considered for the Autism Resource Centre's pre-primary (K2) special kindergarten class called the WeCAN Early Intervention Program. At that time, he was only completing one or two circles of conversation at most. For example:
Adult: Hi, R.
Adult: How are you?
Adult: Is that your favorite...
R would just walk off and drift away while the speaker was in mid-sentence!
However, the results were promising enough that ARC agreed to look at him again after Term 1 to consider him for Terms 2-4.
Then, a good friend working in the Max Planck Institute in Germany who had been following R's journey in autism via Facebook sent me scientific literature indicating that gut bacteria seemed to be associated with ASD, adding that while research isn't yet conclusive, I may want to consider administering our own trial with R. So in January 2014, I ordered a probiotic (Nature's Way Primadophilus) off the internet (iHerb) and gave R one a day. The results were beyond our expectations. He went from having just 2 circles of conversation to having 15 circles of conversation by March when he was interviewed again at ARC. He was accepted and started in Term 2.
At WeCAN, R joined a class of other children - 7 boys and 1 girl. They had two main teachers and 1 subject teacher. Every teacher in the school is trained to support learning for ASD children. They provide detailed reports every week on what your child has done and how well they did it as well as what we can do to reinforce learning at home. The focus was on developing learning skills and not academic content. Everything in the school is intentional about supporting learning for ASD children. Speech and behavior training is incorporated into their daily lessons.
One week into his class at WeCAN, R waited patiently for me to finish a section of violin practice with his younger brother. That, in itself, is a first, because usually if R wants my attention, he'll just come bounding up to me and interrupt whatever it was that I was doing. I noticed him waiting patiently, so I asked him, "R, what is it?" and he responded by asking me a question. Inside, I felt like my jaw dropped, because until then, he had never, ever initiated or introduced a subject of conversation with me before. NEVER. I can't even remember what the question was, but I must have answered it, finished the violin practice in a daze, waited for my husband to come home to share the news and just cried tears of happiness. I had my first conversation with my son! It still makes me cry to remember this.
R's drawing of a 'Cake Maze' filled with detail.
R's improvement was rapid, but he's still different in his own sweet way. He is very animated, expressive and affectionate, freely giving hugs and kisses to people he likes, even upon the first meeting. Physically, he is extremely well coordinated and seeks challenging activity. He enjoys reading on our stuffed leather chairs while balancing on his head and elbows, holding the book up in his hands. We learn Taekwondo together where we are both currently blue-striped belts. He's still a bit argumentative with his younger brother, but never resorts to blows or physical violence in any way. He draws complicated mazes freehand and loves to make puzzles and activity pages for his brothers. He reads and writes well and is finally numerate. We opted, in the end, to send him to ARC's Pathlight, the primary and secondary school that administers the Ministry of Education's standard academic curriculum while exempting him from the Mother Tongue (which would be Mandarin for ethnic Chinese students) language requirement rather than to send him to school along with his brother, a well-regarded local school just across the street from our home. We could see how much he has grown from the supported learning environment. In fact, we think that the social, independence and self-care skills that Pathlight teaches would be beneficial to all children, including neurotypical children. If we could send all our children to Pathlight, we would. I regularly take what I'm learning through R and teach the necessary skills not just to my youngest son, but my eldest one, too.
I should also add that there looks like there are a couple of very promising supplements for treating ASD. I say, "promising" only because NUH will not conduct local clinical trials if there are fewer than 2 papers published in support of it. However, they welcomed us to try at home and keep them posted on the results. One is folinic acid (bioactive form of folic acid) and the other is sulforaphane (broccoli sprouts extract). Both are available from Source Naturals on iHerb. Unfortunately, they're hard for children to consume - they're not chewable. As a result, your child has to be able to swallow the pills. Moreover, I've discovered that R is allergic to something (one of the fillers) in the sulfuraphane and would get a small rash after just a couple of days. We confirmed this three times and won't be trying it again, but we do want to try the folinic acid. However, since they're made by the same manufacturer, the probability is high that some of the same fillers would be present.
I'm inclined to think that all children are special. They each have their own strengths, weaknesses, interests, challenges, etc. and it is our responsibility to lead a partnership of teachers and other child-givers as well as in community with other parents and children to help our children grow into the well-adjusted, compassionate, generous, civic-minded and socially engaged people that they have the capacity to be. All our children - special and neurotypical - need our help and our example of helping others, helping each other and being helped by others. Don't give up.