Jack’s Autism Story
Jacks’s Autism Story
Five words that changed everything
Going gluten and dairy free and forming his first sentence
“Jacks” …… “feet” …….” are” …….” all” …….” wet” ……… my husband and counted with our fingers as we repeated the words my then 31-month-old son had just said, “that’s 5 words”, “that’s a sentence” …” OMG that’s a sentence”. This was 3 days after going cold turkey and completely removing all traces of gluten and dairy from the diet of our son who was barely verbal and had regressed into the world of Autism from the age of around 15 months.
These words came 3 days after removing gluten and dairy and 5 weeks after his ‘official’ medical diagnosis of Autism.
My husband and I have talked about it many times before, which words changed our and our son’s world the most “Your son has autism” or “Jacks’ feet are all wet”.
We’ve concluded it was the latter. The latter gave us the hope and conviction to believe we could recover our son, we could heal him, the former could have left us in a world of denial, despair and confusion.
Those words led us a to a parallel world, one that existed but I was not aware of, a world of learning not only about autism, but about the body, the mind, the way we learn, about the whole host of co-morbid conditions that often go hand in hand with the diagnosis of autism, about naturopathy, about homeopathy, about vaccines, about parasites, mould, environmental toxins, GMO’s, genes, yeast and bacteria.
Our child’s regression into autism
Circumstances created the perfect storm, resulting in autistic regression
Jack regressed into Autism. I do not believe he was born with the condition of Autism, instead he had the medical markers of Autism that alone may have come to nothing, but given the right mixing pot and set of circumstances exploded to create the perfect storm, that storm being Autism.
Some of these medical markers I have only just recognised after years of reading and research, some were obvious. Jack was born jaundiced with a high temperature, he had tongue tie, a mild lip tie, sacral dimples, he also had a large stork mark across his forehead.
I had taken the wrong form of folate in pregnancy, I had the flu vaccine whilst pregnant and to top it off had tested positive for Strep B and so he was given antibiotics at birth and he had received them via me in utero for the hours leading to his birth. His healthy gut flora would have been wiped out at only a few hours old. Still, he was considered to have been born healthy and got top Apgar scores.
Cradle cap, eczema, thrush, colic, poor feeder, frequent ear infections … early signs of an ‘autism’ risk?
Jack did not feed particularly well, in part initially due to his tongue tie but even after it was cut he had bad colic. He was however a happy baby outside of feed times. He struggled to breast feed so I expressed until he was six months and then moved onto formula and solids.
At 7 months, he developed very bad cradle cap, thrush around his genitals and eczema. He still had very bad colic. His doctor badly advised us that very few children had true food intolerances and to keep up with the formula and baby food.
By 12 months his eczema got worse as did his pickiness around food, he had been on numerous courses of antibiotics for recurrent ear infections but Jack continued to develop and meet his milestones, he continued to receive his vaccinations as per the recommended schedule.
I remember well putting his expanding head circumference size down to obviously being a ‘brainy’ child and his health nurse raised no concerns as his head circumference went from the 50th percentile at 2 months old to the 75th at 4 months and by 18 months was near the 100 percentile and at the very top of the scale.
Our charity is run by parents and we value parent experience. We encourage parents to share their stories. Parent experience cannot be viewed in any way as medical or therapeutic advice. Each parent story is just that: one account as shared by one family. Your family’s experience may be completely unrelated.
From noticing the first signs of autism to official diagnosis
Walking on tip-toes, not sleeping, sensory problems, repetitive behaviours, spinning wheels, Thomas the Tank Engine …
It was around 18 months that my husband said one day ‘walking on tip toes is a sign of autism’. Up until that point I had not even considered it.
Yes, he was a challenging baby, he was sometimes and without explanation unhappy, he had some sensory issues and did not like being held, he would frequently arch his head and back when held and then thrust his head dangerously forward bursting my lip and nose on a couple of occasions.
He had repetitive behaviours spinning and spinning his Thomas the Tank engine wheels whilst laying on the floor on his back, he was fascinated by plugs, he was very picky about foods loving anything carb and gluten loaded or full of dairy. His favourites being ham and bacon (full of nitrates), cereal and eggs. He LOVED eggs and he got the nickname ‘eggy’.
His eye contact was fleeting, he was not sleeping well and would wake in the most awful moods with blood chilling screams, he had a little pot belly, tight dry almost white ringlet hair, he walked on his tippy toes, he had been hospitalised for gastro.
He began to use his newly acquired language sparingly and span in circles flapping his arms out like a baby bird, but autism ….no, No, NO. We were not convinced, or with the power of hindsight, were in a state of denial.
Slowly regressing and gradually losing skills, the diagnosis was of moderate autism & severe speech delay
Jack regressed slowly into Autism and so there was no sudden realisation that he had lost skills that he once had. By the time we finally got the medical referral and saw the physiologists it was months later and by that time we knew without doubt that this would be the medical diagnosis that he would receive.§
He was diagnosed with moderate autism and severe speech delay. His tested IQ below 70 put him into ‘cognitively delayed’. It should not have been a shock, but it was.
The prognosis was ‘No Hope’ – unlikely to ever live independenly or regain lost speech and skills
We walked out of the psychologist’s office after being told that we should start considering special suitable schooling, that we needed to get him started with a speech therapist, that he was unlikely to lead an independent life and may never regain his lost verbal skills or move on from where he was.
We were told that ABA was ‘controversial’ and that established therapies such as speech and Floor Time was the way forward.
Researching, investigating, asking questions…
Diet brings immediate cognitive, bowel and posture improvements
It did not take us long to realise that investigating and researching diet and its effect on the body and brain were key. Overnight we became ‘google’ parents, many many times researching well into the early hours of the morning.
We implemented a strict gluten and dairy free diet and saw near immediate cognitive, bowel and posture improvements, this was followed shortly after by removing corn and soy.
By this point we had found a doctor that was highly regarded for his work with children with Autism. He treated Autism as a medical condition, a series of medical conditions and under him we started on the slow road towards healing.
We also found a nutritionist who pointed us through the maze of dietary options and targeted them to what we were working on medically. She supported us moving through dietary approaches; ‘GFCF’ to ‘GFCFSFCF’ to GAPS, to low oxalate, to low fructose, to low sugar or no sugar, to fermented, and then finally to Paleo. Today he is 100% Gluten and Dairy free, heading towards Paleo and low sugar / preservatives.
Uncovering and treating many medical and health problems, gut dysbiosis and mineral imbalances
Numerous blood, urine, faeces and X-ray tests were run and we found out Jack had many food intolerances, had a compromised immune system, had gut dysbiosis (leaky gut), was constipated and had compacted faeces, had high strep and yeast markers, had numerous mineral and vitamin imbalances including high mercury. He also had high clostridia and e-coli. He has MTHFR issues and has a compromised detox pathway. He also had parasites.
Following our doctors lead we started to address the above list of medical issues, uncovering more as we went. We found a homeopath that worked closely with the results from the medical testing in addition to treating him based on life events.
In the main we saw huge improvements whilst addressing some issues, others we saw nothing or heartbreakingly witnessed a regression. Overall though he was making massive leaps forward.
At just over the age of 3, Jack called me ‘Mommy’. I had once been ‘Mommy’ but at around 18 months he lost the ability to call me ‘Mommy’ and instead everyone in his life was called ‘Daddy’. Another ground breaking moment.
Behavioural approaches, ABA, and starting school
Blossoming on ABA Autism Partnership program
After much research and after not being convinced of some behavioural approaches we implemented a very intensive home and nursery based ABA program with Autism Partnership. We were fortunate and had some marvellous therapists.
Jack did really well in this program and it suited him. He blossomed. We stopped the home-based ABA program when he started Reception although in reality ABA lives with us every day in some form or another, not structured sessions but just as a learning approach.
Jack has no aid and continues at school with no real invention or additional support. He has blossomed at school, he has friends, he is loved and returns that love. He is happy.
He is very academic which is nothing short of amazing when I think back to the ABA programs focused on him holding a pencil and encouraging him to make a mark on the paper without a complete meltdown if he perceived that mark as being ‘messy’ or not exact enough. He is a fabulous and advanced reader with an amazing imagination.
‘Recovery’ from autism depends on the definition of the word
Jack is a joy to be around and every day he surprises us with something new. Has he recovered from Autism? I’m hesitant to say, as it ultimately depends on your definition of ‘Recovery’. If recovery means that he can enjoy life, enjoy school, maintain and make friends, contribute and is healthy then yes definitely. However, Jacks recovery is still managed. He still maintains a strict diet and we are very careful about nutritional balance and environmental pollutants.
Jacks is a good news story, he’s our good news story. He has proved to us and many around him that Autism does not have to mean the life that the majority of the medical / health profession choose to paint. Healing (and Recovery) is possible. Research, follow your gut, shout your very loudest to be heard and stand your ground in the face of dismissal, adversity, rejection and fear. Surround yourself with people on the same or similar journey and believe.
Don’t give up and when you fall down, get up!
Jack’s Mum and Dad