I’m going to jump forward in time now to the present day because our experiences over time have proved beyond doubt for me that, certainly where my own son is concerned, there is an inextricable link between the gut and autism. I want to look specifically at three things.
1. Gluten and dairy foods.
2. Gut sensitivity and classic autistic symptoms.
3. Gut observations from non-autistic people.
1. Gluten and dairy foods.
Shortly after our paediatric experience I received a phone call from one of my older daughters in England to tell me about a television programme she had seen that featured a number of parents of autistic children who were reporting exactly the same food-related symptoms as I was and who, like me, were being ignored by the medical profession. These parents had started an alliance called A.I.A, standing for Allergy Induced Autism. This title was not, strictly speaking, correct as the reactions that the children were exhibiting were not allergies but processing problems or intolerances. We need to remember though that these were early days in autism knowledge and parents were very much on their own.
I immediately made contact with A.I.A and their regular newsletters and support network, although U.K based, were an absolute lifeline. I realised I was not alone in the observations that I was continually reporting and most importantly I realised that I was not alone in being treated as if I was gaga by every medic I came into contact with.
Via the A.I.A newsletters I discovered the work of Paul Shattock of the Autism Research Unit at Sunderland University. Paul Shattock was himself the parent of an autistic child who had exhibited the same responses to gluten and dairy foods that my son had done and this prompted him to set up a research project to investigate this phenomenon.
His hypothesis was that the guts of autistic individuals could not sufficiently break down gluten or dairy foods, leaving them in a partially digested state of opiate compounds. In short, Paul Shattock asserted that autistic children were literally ‘spaced-out’ by the foods they were eating – an assertion that went a long way to explaining their avid addiction to these foods to the exclusion of all others and their addict-like behaviour if denied them.
This theory was not accepted by many medical professionals but countless parents, myself included, saw major improvements in our children’s attention and awareness once we weaned them off gluten and dairy foods. Our case is particularly interesting because in our household we have my daughter as a ‘control’ subject.
Although she is not autistic she does have many of the sensory and sensitivity problems associated with the autistic spectrum. When she was referred for intellectual assessment because of her very obvious giftedness we were given some information sheets from the centre for gifted children at Dublin City University. These illustrated the known correlations between giftedness and the high functioning end of the autistic spectrum.
As a young child she had certainly exhibited some quite acute food sensitivities but a particularly interesting thing occurred when she was around eleven to twelve years old. She had, up to that point, been Home Educated for most of her childhood (a story we will get to later). By the age of eleven she was approximately two to three years ahead of her chronological peers in relation to the school curriculum and we wondered if secondary schooling might now be a good option (it wasn’t). But we tried it anyway and off she went with a lunchbox in which she wanted sandwiches like everyone else, specifically Dubliner cheese sandwiches. This wheat and dairy blast was not part of her normal diet and a strange thing happened – she became really addicted to this stuff and began to have what I at first thought were epileptic ‘petit mal’ attacks, except they weren’t because they only happened when she ate the sandwiches. Whenever she ate them she became dreamy, inattentive, blank-eyed and impervious to people trying to get her attention. As soon as I realised what was happening I stopped the sandwiches and she returned to normal. She is now twenty and avoids gluten and dairy like the plague. Gluten now gives her severe stomach cramps and if she inadvertently eats something with milk or cheese in it she will have great difficulty in concentrating until it has left her system.
A friend of mine whose perfectly normal son has suddenly developed pasta and cheese addiction at the age of ten has had exactly the same problem.
My response to doubting medics is...LISTEN!
2. Gut sensitivity and classic autistic symptoms.
For many, many years I kept reporting to anyone who would listen that, whenever my son’s digestive system had in any way been sensitised, either by a stomach bug, by anxiety, or by something adverse he had eaten, he would exhibit two particular forms of classic autistic symptoms that he did not exhibit at any other times.
The first was the classic autistic ‘explosion’ where, out of the blue, a calm and happy child can suddenly ‘flip’ and start yelling, headbanging and be aggressive to either themselves or others.
The second was the sudden appearance of bizarre, repetitive ritualistic behaviours.
Both of these phenomena would disappear as soon as his gut health was restored. His gut health has always been dependent on:
a) Diet management
b) Anxiety management
c) Absence of ‘bugs’.
His system has two levels of response to these factors, depending on how severely they are impacting on him.
If his gut is moderately sensitised by any of these factors he will ‘flip’, very predictably, approximately five to ten minutes after eating or five to ten minutes after defecating although he is clearly not in any pain. Although he has no speech his pain resonses and ways of indicating that something is hurting are perfectly normal. If his stomach was hurting he would groan and hold it. This is most definitely not what happens. He will be completely calm and happy and then suddenly begin to make a grating, whining noise unlike anything else he ever does. This builds to a point where he will suddenly explode into yelling and often headbanging also. This usually passes after a few minutes but there is always a brief 'return'. Once this passes he will instantly return to his usual calm, smiley self.
If his gut is really sensitive, in addition to all the ‘flips’, he will develop bizarre, repetitive and ritualistic behaviours that he never exhibits at any other time. As soon as his gut calms down these disappear completely.
For years medical and psychological professionals insisted these were classic, autistic behavioural problems and insisted on approaching them as such...succeeding only in making them worse because of the anxiety they piled on to my son by their ‘expert’ interventions.
For five years, from the ages of ten to fifteen, these symptoms were eliminated almost entirely by management of both my son’s diet and anxiety levels and they returned only if he went down with a tummy bug. Anxiety has always had a devastatingly bad effect on his digestive system and the greatest leap forward that we ever made in this respect was when, at age ten, I removed him from school to educate him at home (more on that one later).
My son never developed the ability to chew and the texture of food that I gave him was very noticeably related to the development of adverse reactions. Blended food was boring but it was nutritious and filled him up and, most importantly, it didn’t cause flips and explosions. But all that changed a year ago...when he learnt to chew.
He’s still not great at it BUT the change in the texture of the food, from blended to solid, brought some devastatingly bad reactions. The more solid food he eats the more flips and explosions we get, behavioural manifestations we had not seen for years. But if I put him back on to blended food they disappear. This is not because he is eating different food. He can be fine with a food if it is blended and go completely to pieces if it is of a more solid texture.....the texture and its effect on his hyper-sensitve system being the key factor. He also develops repetitive 'hissing' noises when eating a more solid diet and these too disappear when he goes back onto blended food.
We had not needed to see his gastroenterologist for five years because he had done so well. When we went back to him earlier this year he said that my son had been one of the first autistic children that he has encountered with these symptoms but that, in the last five years, numerous others had been referred to him with exactly the same problems.
The hypothesis of what is going wrong for these children seems to hinge firstly on the propensity to gut sensitivity that so many autistics have and secondly on the reaction this has on the vagus nerve which connects the gut and the brain and which seems to trigger these classic, autistic ‘brain storms’.
My son has had to grow up without the assistance of pharmaceutical medicines because of the extreme reactions he has always had to them but both his consultant and I thought that it may be worth trying him with something to treat his acute gut sensitivity. At sixteen years of age we hoped his system may have become stronger. It hadn’t, two days into dosage he had a desperately bad reaction, became very ill, and developed bizarre behaviours. We are now back onto dietary management which is slowly settling him. He is bored to tears with blended food but at least he doesn’t explode after eating it.
I just wish someone had listened to me so many years ago. How much anguish we could have been spared!
And so to...
3. Gut observations from non-autistic people.
I have a very good friend who has been coeliac since childhood. She told me a year or so ago about what happens to her if she gets a spell of gut inflammation from eating something she shouldn’t. She explained that inflammation, if it occurs, is always in one specific part of her gut and she’ll sleep on her side to avoid discomfort from this. If, however, she turns in her sleep so that there is pressure on this part it is not pain that wakes her up. No, what wakes her is a sudden, intense burst of extreme anger and aggression. In fact, we sometimes wonder how her blissfully sleeping husband has survived for so long.
Sudden intense anger, sudden intense aggression.... sounds very familiar doesn’t it? But this lady is definitely not autistic.
I know at least three other, non-autistic people who experience similar problems of sudden negative mood-change if their digestive system is disturbed.
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There is something going on here and medical and psychological professionals would do well to take notice. Classic autistic symptoms have proved extremely intransigent to both drug and behavioural therapy. I think it's time we got to the guts of the matter.
Gaia Charis. June,2010.