Some time ago I posted about B’s ongoing bowel problems and the problems associated with them (see ‘The Nappy Situation’). Shamefully, a long time has passed and still we have done almost nothing about this. This is despite getting some good advice about gluten and casein free diets, the GAPS diet and so forth. I have read convincing arguments for the removal of these aspects of an autistic child’s diet, whether it be from 13 year old Luke Jackson or publications such as ‘Autism as a metabolic condition’. I think I understand the concepts of ‘leaky gut’, the build up of peptides and the opiate effects of a metabolic imbalance. I can see how the diet of an autistic child might affect them physically in their bowel movements and in their behaviour and manner.
Why on earth have I not acted upon this, then? I have a couple of reasons- bear with me while I try to convince myself.
I would deflect blame from myself firstly by looking back at the last meeting with B’s pediatrician. With a wave of her hand she dismissed any notion of gluten and casein intolerance or other such links with autism. She was pretty definite about this, although she did suggest cutting down on the amount of milk he has in his diet. I understand that many GPs and health professionals share her stance on this. Who am I to argue? As adults we all do things that go against the advice of our doctor all the time, but who ignores advice from doctors about looking after their children? How can the uninformed lay person like myself begin to understand an issue which divides scientist and doctors? I think seeing the doctor dismiss it set us back a long way. Of course, the doctor doesn’t have to come home with us and change B’s nappies, so as time has progressed and the situation has got no better, her words have resonated less and less.
Another setback was the week in which, for no discernible reason, B suddenly started doing solid poos. What a wonderful week that was. I never thought I would take such delight in looking at a child’s poo. With our hopes raised, we started once again thinking about potty training. Autism would still be a barrier to getting him to use the toilet, but at least physically he would be able to manage it. Alas, it did not last. I have no idea what was different about that golden week. We’ve thought carefully about possible explanations but cannot think of any. Before long we were back to the usual nasty nappy contents that I will spare you a description of.
Another, more mundane reason is that time simply slips away without you realising it. With two kids, two working parents and busy, busy lives, it is easy to put it off just a little longer. I’ve also noticed how my autism-related activities seem to be dictated by how difficult life with B has been. On a calm week, it’s nice to bask in the relative normality. When we’ve had a tough week, I find my determination to do something increases and that’s when the books get read, behaviour strategies discussed and, as you’ll see below, nappy situations addressed.
We have had ‘The Sunderland Test’ pack at home for a while. My wife learnt about it a while ago from a thread on Mumsnet and sent off for details. A pack was dispatched to us with the above mentioned ‘Autism as a metabolic condition’ book, details of the work carried out by the Sunderland test group and a sample pot. Put simply, the test looks for the presence of toxic agents that may be caused by certain intolerances such as gluten and casein. The literature examines the evidence for a link between these metabolic issues and autism. More info can be found here.
We were slow to part with the £60 charge for the test, until we realised how ridiculous we were being in letting £60 get in the way of possibly helping our son. You’d pay anything, wouldn’t you? So we did it, and yesterday we got the results.
I wouldn’t say I was expecting all the answers to suddenly be revealed by the report we received. I was, however, expecting something I might have a possible chance of understanding. What we got was a scientific analysis that was almost impenetrable in its complexity. On first reading I didn’t understand a word of it. Just lots of jargon and graphs as far as I could see. I considered taking it to the science department at work for a translation but thought better of it. Here’s a typical section of the report:
It made no more sense to me in context than it does out of context. I began thinking the whole thing was an elaborate hoax when I read about the ‘Quadrupole Time of Flight Mass Spectometer’ used in the process. That, to me, is something used by a villain to take over the world in a James Bond movie.
Last night, after several read throughs, we began to decode the document. Some of it started to make sense. Today, my wife called them up and was given excellent help and support. We not only have answers, but several additional documents and information have been emailed to us.
Here’s the overall result: whilst no intolerance of gluten was evident, some nasty casein elements were present where they shouldn’t have been and these baddy bits (I’m using my words here, not theirs) could (always those modal verbs) be a link to the nappy situation and is also common in autistic children.
The answer: cut out all dairy products in B’s diet. Or at least try it for four to five weeks and see if it makes a difference. So that’s what we are going to do. Starting tomorrow. It will, I expect, be very difficult indeed. B has quite a narrow diet and dairy features heavily, from milk to cheese to yoghurt. It also goes beyond diet, because milk at night is a part of his ritual. He likes familiar things and is intolerant of changes to the regime. I think we will have a battle on our hands and a difficult few weeks. But, in a months time, who knows where we might be?
So we’re going for it. No more procrastination- this is my son we’re talking about and it’s my responsibility to make this happen. Besides, I’ve written it down and posted it now, so I’ve got to do it!