[1588] Autism: “ASD improved out of sight” (January 2021)

My eldest son had already been through some trauma by the time he was 4, but when we moved to a new house and he was covered in head-to-toe bites I assumed it was insect bites, midges, mozzies at the new location.  So, I covered him up, and put-on insect repellent and still they came up, we went to Dr after Dr who all said they were insect bites.  After a period of months, I mentioned this to my mother who told me that if the ‘bites’ appear symmetrically on the body then maybe it was food reaction.  One of my first obvious clues.

By now he had started school, an event I had eagerly anticipated as my son was very bright and loved to be engaged.  However, school did not go well, my son was angry, aggressive, violent.  At home he made constant noises, threatened to hurt people (in his mind he was joking), couldn’t sleep, he had weird breathing patterns, he itched all over (and was covered in scars for years), his hair stood on end, he had potty words in every sentence, I also noticed echolalia and palilalia, he couldn’t sit in a chair (literally), was never ever still, he couldn’t focus, on timeout he would smash his toys and ruin his furniture, I was constantly called in after school by the teacher for his behaviour, by the time I had him home he was so uptight he would start punching me.  Things were not going well.  Unfortunately, things at home were also difficult, my partner at the time had taken an adversarial position against our son’s behaviour which did not help at all.  Due to his critical and difficult positions I did not feel I had any support in trialling the elimination diet as I knew he would not help and would certainly not change his diet in any way at all.

By now I was beside myself with strain and stress.  I again mentioned my son’s behaviour and skin to my father, who is severely food intolerant.  He told me that skin rashes like that are the tip of the reaction iceberg and often only show after all the other ‘hidden’ reactions like soft tissue swelling which can occur all over the body including the brain and nasal passages.   The penny finally dropped. I realised just how much my son was suffering from what was most likely a severe food intolerance.  My then partner worked FIFO 3 on 2 off, so I waited until he was on for 3 weeks as I knew it would be enough time to dive right into the elimination diet.  I also spoke to my sons P & C canteen ladies who were super supportive and made sure there was food and drinks he could order at the canteen for lunch like the other kids.

Both my sons and I started the elimination diet, focusing on ‘what you can have’ rather than ‘what you can’t have’ attitude.  I had read that if it works you might get a strong reaction on day 4 or 5.  Well, on day four my eldest son and I both squared off for war of the worlds.  Grrrr! We were both so mad.  I though ok, this is good. I’m hopefully on the right path.  We stuck at it 100%, toothpaste, cleaning products, food, everything.

The changes revealed themselves slowly, one by one little miracles occurred over the next three weeks including the following:

•    No more hives.
•    No more constant noises.
•    Breathing improved.
•    Sleep improved.
•    Behaviour became much less aggressive and defiant.
•    Digestive issues settled down.
•    Swearing in every sentence disappeared!
•    Echolalia and palilalia disappeared!
•    And after three weeks, the child who could only hide in the corner and hiss in response to upset, turned around to me and announced: “You know mum, I really don’t like it when you boss me around.”!!

The elimination diet wasn’t a cure for ADHD and ASD, but for us it resolved much of the worst behaviour and allowed his true nature to come through.

His ADHD symptoms settled a great deal but he was still hyperactive, but I believe that was largely due to the home situation and that he was also suffering from trauma, additionally having ASD and being in a regular classroom was challenging for him.  His teachers worked with him and gave him two desks.

His ASD improved out of sight, he was still himself, but such a different more comfortable and happier version that could communicate and manage himself with greater skill.  I asked him how he felt after about 4 weeks, his response “Better than you’ll ever know mum”.   I never had to force him to stick to the diet, he did it voluntarily for years apart from the odd slip up.

To me the changes were so dramatic, he was like a new person, still himself, but different.  I realised after years of battling I couldn’t cope with him reverting, so we didn’t do the challenges. I was sure he was reacting to everything anyway. He stayed on the diet for years, but over time I very slowly reintroduced things.   Every now and then we would slip up, and I’d be scratching my head trying to figure out why I was so cross with him.  Then I’d do my homework and figure out if he’d eaten anything or been to someone else’s place and sure enough I’d find the culprit.  Sometimes it was a well intentions friend’s mother feeding him treats, one time it was a wart patch (made with salicylic acid) that was enough to change his behaviour - Mary