I have this theory that if all parents of autistic children were really listened to we would have a very much better understanding of autism. Heaven knows, we might even find a cure.

Right from the time that my son first regressed into autism at fifteen months of age I have been reporting all sorts of things about him that have seemed very significant to me...but which have been largely ignored or dismissed by professionals dealing with us, mostly because what I was saying did not seem to fit within any established paradigms that they were familiar with.

Over the course of sixteen years these individual observations have formed very distinct patterns, none more so than the relationship between my son’s autistic symptoms and the state and sensitivity of his digestive system at any given time. The correlation between these two factors is profound, as is the degree to which either an improvement or deterioration in his gut can alter the manifestations of his autism. 

But let’s start at the beginning

There has been an explosion in information about autism during my son’s lifetime which mirrors the increase in its incidence but sixteen years ago it was much less common and much less highly-profiled than it is now. Hindsight is a wonderful thing and, looking back, I will always wonder if my son would have become as severely autistic as he is if only I had known then what I know now

 Although I had encountered milder autism as a teacher my experience in this context was concerned with the behavioural, communicative and cognitive implications of the condition. I had no idea that there could be any physical links, this I have learnt from experience and from observation

 Looking back, even to his babyhood, I believe that my son was always predisposed to gut sensitivity and food intolerances. There were a few occasions when he started to move on to solid food where his eyes would flicker momentarily shortly after eating. This worried me as my brother is epileptic and I had seen that same flicker in his eyes as a child. I mentioned this to our GP but he was not concerned as Con appeared to be fine and so I put it to the back of my mind.

 His development continued apace until, at fifteen months, he caught a virus which led to a chest infection for which he had two courses of antibiotics. Immediately after this he began to regress.

As with so many autistic children his regression was slow, sporadic and subtle and so it was very difficult to pinpoint. Con is the last of four and all my older children are girls. Much folklore surrounds the supposed differences in development between boys and girls and I began to wonder if there wasn’t something in this when his speech did not develop as early as his sisters’

 But the most noticeable change was in his eating patterns. He moved from happily eating very balanced meals to wanting only wheat or dairy-based foods. It didn’t matter how hungry he was, everything else was turned down in favour of these foods. But when he ate them they seemed to affect him badly, making him alternately hyper and ‘spaced-out’.

I took him to GPs on a number of occasions who passed the opinion that it was ‘just a phase’ and that on no account should I remove these foods from his diet for nutritional reasons.

We stumbled on like this for another year before I realised there was a distinct connection to antibiotics. He seemed prone to respiratory infections that left him very congested for which he was often prescribed these.

Between times of taking them he would improve, his attention would return and some words would appear. Then, once on antibiotics again, his behaviour would become so hyper as to be weird, he would become ‘spacey’, his sleep pattern would fall to pieces and he would crave wheat and dairy foods.

Whenever I went to the GP I felt as if I was being seen as a bit dotty myself as I recounted these symptoms. Then both his regression and his bad reactions to food got a lot worse. Suddenly, he started to react extremely badly to eggs, which he loved. If I gave him an egg for breakfast he would start to scream and throw himself about wildly for a few minutes before returning to normal. His eye contact had, by now, virtually disappeared.

The ‘egg effects' became so bad I went back to his GP, a different one by now. He found what I was saying too incredible to believe without the evidence of his own eyes. By then I had stopped giving my son eggs which, sure enough, stopped the reactions but he was still regressing badly.

My anecdotal evidence, my parental observations, were not enough in their own right. This man said he could not really believe what I was telling him unless I could bring my son in and feed him eggs so he could watch his reaction.

This was the beginning of a pattern of ‘professional’ attitude that has blighted our lives ever since.

There is a prevalent assumption that the term ‘professional’ automatically infers objectivity and authoritative knowledge. There is an equally prevalent assumption, particularly amongst professionals themselves, that the term ‘parent’ automatically infers an unreliable and prejudiced subjectivity and no knowledge whatsoever

However, this particular visit to the surgery was not in vain. I was reaching desperation point in that I could see a clear physical correlation in what was happening to my son. I just didn’t know what to do about it. Bear in mind also that the Internet had not yet exploded into our lives at this point.

But destiny lent a hand. While we were waiting to see the doctor, I picked up a magazine which had an article about intestinal thrush or candida and in it I saw all the symptoms that my son was suffering from.

I was not as bolshy then as I am now. I’ve never exactly been a pushover but sixteen years of negotiating the appallingness (and I don’t use that word lightly) of disability systems has honed my capacity for plain-speaking to a fine art – and this is where it all began.

What kind of doctor asks a parent to voluntarily give their child something that they know is going to make them ill?!?! Just so they can see for themselves.

I looked at the doctor, I looked at the article (which I had pilfered from the waiting room), I looked at my rapidly disintegrating child and I decided that from now on we were going our own way.

I went home, altered my son’s diet and put him onto a radical anti-candida regime – plenty of probiotics, no sugar and absolutely no antibiotics.  Within a few weeks the change in him was profound. He became much calmer and more stable and his eye contact returned.

By this time we had a referral to a paediatrician. That is another saga. As you may guess it’s not a good one. Read about that one in ‘Gut Reactions II.’