A mother recalls her struggle with autism, and assures other parents that children with autism can improve and even recover, with the right treatment.
I AM the proud mother of two wonderful daughters, Maya, who is now five-and-a-half years old, and Yasmin, who just celebrated her fourth birthday recently. They are both in a mainstream Montessori kindergarten now.
Very soon Maya will be enrolled for Year One. Just a short two years ago, we didn’t dare dream that Maya would be ready for a big mainstream school with other neurotypical children. But now Maya is thriving in the mainstream school, with no shadow aide or additional support therapy. Looking at her, she seems like any typical girl.
Maya was diagnosed with moderate autism at age two years and eight months in June 2008. She showed many autistic symptoms, eg spinning, tip toe walking, looking out of the corner of her eyes, no eye contact. She had many tantrums and mood swings, was very hyperactive and would climb everything.
She was a very picky eater, had terrible constipation, and constantly licked everything, even the floors. She would wake up at night crying or laughing, she was lost in her own world, and couldn’t bear to be in strange places.
Maya was self-abusive. She would scratch herself until she bled, sometimes pull her hair out by the clumps. She banged her head against the floor or walls repeatedly.
Maya had a lot of auditory and visual sensory issues. She lost many of the skills and words she had previously learnt. Maya had terrible echolalia (repeating words or sentences over and over). She still knew some words, but all her speech was unmeaningful or out of context. She had very little language comprehension or receptive language.
Maya never called me mummy.
Autism Spectrum Disorder affects each child differently. Every child is unique, and presents different sets of physical and physiological symptoms. The treatments are not one-size-fits-all. – AP A gradual descent
We didn’t immediately notice Maya’s regression. I had just given birth to Yasmin, and was very preoccupied with a newborn baby. We dismissed Maya’s worsening behaviour as attention-seeking ploys.
Within the next year, she became more and more uncontrollable and extreme. My maternal instincts told me something was very wrong with Maya, and my research on children’s behaviour led to the suspicion of autism.
I finally found a developmental paediatrician, and she confirmed my suspicions and diagnosed Maya with moderate autism. Another child psychiatrist and a clinical psychologist also concurred.
Her sister Yasmin regressed after a rotavirus illness at age one year and 10 months. She started showing many autistic behaviours, eg terrible tantrums, mood-swings, incredibly non-compliant, constantly jumping and climbing. Yasmin became very hyper. She would scream and shout all day long.
She had a lot of sleep issues, and from being a good eater, she lost all her appetite and lost weight. For the next one year, her bowel movements would alternate between diarrhoea and constipation. For nine months, she had chronic diarrhoea. Yasmin would constantly knock on the walls, patting and rubbing surfaces. Her development plateaued, though she still had adequate speech and language skills.
Yasmin’s regression was very rapid compared to Maya, but by then we were familiar with autism signs and symptoms. Together with biomedical doctors, we worked very hard to prevent her from developing autism fully. She was never formally diagnosed with autism. Gradually she improved, and is no longer at risk of autism.
Both girls had normal age appropriate development until they regressed.
First reactions
When we first received Maya’s autism diagnosis, my reaction must have seemed shocking. Whereas most parents felt anger and were in denial, I felt relief. I knew what we were fighting against. My husband was shocked and in denial, but soon after, he fully accepted the diagnosis, and we both worked together as a team to help Maya.
It also made us understand why Maya behaved the way she did. It wasn’t because she was naughty, or we were bad parents. Maya had a developmental disorder which caused her to behave and act the way she did. However, at times, the sadness and pain affected us, but we still had to move forward.
Our children needed treatment as soon as possible, so we couldn’t afford to wallow in our own grief.
When I was researching autism, I noticed similarities between certain children and Maya. She was addicted to milk and bread. After she drank milk, she seemed dazed and woozy. But one hour later, she would have massive tantrums and meltdowns. Even my husband noticed Maya’s behaviour after drinking milk, and how she seemed addicted by wheat-based foods.
We immediately started Maya on the Gluten Free and Casein Free Diet (GFCF diet) on the day she was diagnosed with autism.
We replaced her favourite fresh cow’s milk with soy formula, threw out all bread and biscuits made of wheat, and replaced them with rice crackers and gluten-free bread.
I also improved her diet by eliminating all MSG, preservatives, additives, colourings, artificial flavourings, and artificial sweeteners such as aspartame and high fructose corn syrup.
Within one week on the diet, Maya made her first meaningful one -word request. She looked me in the eyes and said “milk”. Before this, whenever she wanted something, she would either pull me to the kitchen, take my hand to point it to the fridge or cupboard, or she would scream and shout while we tried to figure out what she wanted.
Gradually, she learnt to ask for “cookies”, “toy”, or “tv”. Her tantrums, brain-fog, and mood swings were less frequent and she seemed more aware.
Later on, we refined the diet to a soy-free, egg-free, and low sugar diet, and substituted soy milk with rice milk, and saw more improvements. We later found out through medical testing that both the girls had food intolerance to casein and gluten. Casein is the protein in cow and goat’s milk, whereas gluten is the protein in wheat, oats, barley, and rye.
I started researching traditional therapies recommended by doctors. Instead of speech therapy, occupational therapy, and special education, we decided Applied Behavioural Analysis (ABA) was the most appropriate therapy for Maya.
We noticed small but gradual improvements in the first six months, but once we started intensive biomedical treatment, everyone noticed how fast Maya was progressing. The diet and biomedical supplements helped with her sleep issues, calmed down her hyperactivity, and enabled her to concentrate and focus.
A combination of diet and vitamins healed her body and she was no longer in constant pain. This enabled her to be well rested and able to focus during therapy sessions.
Allergy issues
Many children with autism, ADHD, Aspergers, allergies, and even asthma, have many allergies and sensitivities to food and other environmental elements. The GFCF diet does not cure autism. Rather, it eliminates allergens from a sensitive child.
Food allergies and food intolerance can cause physical and physiological symptoms such as dark circles under the eyes, red-rimmed eyes, and other allergy symptoms, such as runny nose, hives or rashes. It may also cause many gastrointestinal (GI) symptoms, such as tummy pains, bloating, wind pain, reflux, abnormal stools, constipation or diarrhoea in some children.
We have been doing the GFCF diet and egg-free diet for both girls since June 2008. At times, we also implemented the low-salicylates diet, corn-free diet, and rotation diet.
Now that Maya and Yasmin’s guts have healed tremendously, they can now tolerate reasonable amounts of gluten and casein.
What helped Maya to recovery was a combination of the GFCF diet, ABA, and intensive biomedical intervention. For Yasmin, the GFCF diet, biomedical treatments concentrating on GI disorders, and homeopathy helped her.
Biomedical interventions are non-drug treatments which consist of vitamins, minerals, probiotics, essential fatty acids, amino acids and naturopathic remedies. It seeks to address the root causes of autism, namely nutritional deficiencies, GI disorders, chronic infections such as bacterial, fungal, viral and parasitic, immune modulation, oxidative stress, inflammation, reducing the toxic load, detoxing, and repairing the damaged metabolic and mitochondrial issues.
I consult with integrative health practitioners who are MDs (medical doctors) and have received training with the Autism Research Institute (ARI). Maya had multiple medical issues such as GI disorders, multiple infections, nutritional deficiency, maldigestion, malabsorption, high oxidative stress, gut and brain inflammation, metabolic and mitochondrial disorder, and immune dysfunction.
We have addressed many of these issues, though there are still lingering health issues to treat.
The road to recovery
Maya slowly but gradually improved. Her behaviour, cognition, and self-help skills became better. From a pre-verbal child, Maya gradually learned to speak in two to three words sentences. I remember counting each word she uttered in a sentence, and I finally stopped counting when she reached nine-word sentences.
Soon, she went on to multi-sentence speech and back-to-back conversations. It took us a lot of time and hard work. Blood, sweat and tears got us here. There is no such thing as a quick fix or miracle pill. Autism is a complex disorder, there are no shortcuts to recovery.
Maya recovered in two years. In June 2010, at age four years and eight months, after a thorough psychological assessment by two clinical psychologists, Maya was declared to be within the non-autistic range. She no longer has an autism diagnosis.
In essence, Maya has recovered from autism.
She no longer requires specialised therapy. She is in a mainstream Montessori kindergarten with no shadow aide. Her current school does not know of her previous diagnosis, and they have never noticed anything different about Maya.
Maya now enjoys school, has lots of friends, and enjoys many activities. She is a very good reader, she enjoys music, and self-taught herself to play the piano. She goes to ballet and jazz dancing classes.
Maya is loving, affectionate, sociable, and well-behaved. Her future is very bright indeed.
Yasmin is no longer at risk of autism. We have successfully prevented her from developing autism. We are now working towards improving her health issues, namely gastrointestinal disorders and immune dysfunction. She is a happy and loving child, very chatty and charming, and absolutely loves her big sister.
Nearly three years ago, Maya’s future was very bleak. Indeed, we were told there is no cure, no hope.
Maya was prescribed mind-numbing neuropsychopathic medications, which we refused. We were told to plan for special schools and long-term care for Maya when she gets to adulthood, possibly institutionalisation.
I’m glad I didn’t listen to those experts.
Though autism was devastating to our family, in the end, it brought us closer and stronger. Maya’s and Yasmin’s strength and resilience in overcoming autism offers hope to us all.
Autism Spectrum Disorder affects each child differently. Every child is unique, and present different sets of physical and physiological symptoms. The treatments are not one-size-fits-all.
Keep a close eye on your child’s development, and consult a developmental paediatrician if you suspect autism. The earlier the diagnosis, the earlier the treatment, and the better chances for recovery. Regardless of your child’s age now, you still have hope. Do your own research and listen to your own instincts. You know your child better than any doctor or professional.
If your child has been diagnosed with autism, do try the GFCF diet. Please consult with a biomedical doctor, regardless how young or old your autistic child is.
Please sign up to the KL Biomed forum at http://health.groups.yahoo.com/group/klbiomed/. My blog, Rainbow in the Sky, is inspired by our journey through autism. Please visit www.mayaviktoria.blogspot.com.
Autism is treatable, and there is always hope.
Maya and Yasmin are blossoming into wonderful little girls, I see the young women they will turn out to be in the future. Maya wants to marry Prince Charming, and Yasmin wants to be a ballerina. You can do it!
This is not to be construed as medical advice. I am not a medical doctor nor am I qualified to offer professional advice. This is based on my experiences with my two daughters, as well as my research and understanding from what I learnt at various seminars and conferences. Please consult with a biomedical doctor to manage your child’s treatment.
