Bowel movements are not usually the topic that people normally discuss when meeting with friends but I guess we are not normal people. Whenever we meet other parents with autistic children, the topic inadvertently comes up sometime or the other. We discovered early on that most autistic (and in fact every autistic child we know) seems to have some short of bowel problems, but mostly constipation. It would be easy to put it down to the poor diet of most of these children but it's not that simple.
Most of the children have food allergies, food intolerances and digestion problems. Shortly after Imaan was diagnosed, we came across literature and anecdotal evidence saying that the Gluten Free Casein Free (GFCF) diet was beneficial for children with autism. I was of course sceptical and we consulted with our son's NHS dietician at the hospital. She informed us that some of the kids she had seen had (reportedly) seen some benefits after following the diet but that there was no clear evidence.
We decided to start the GFCF diet for Imaan after we found out that there were some improvements in his diet and behaviour when we removed these from his diet. The realisation that gluten was like a drug to Imaan came to us after we completely got rid of all products containing gluten and casein. His tantrums when he went cold turkey was terrible and we nearly gave in sometimes. Afterwards he would even snatch biscuits from the hands of other kids and quickly put it in his mouth before anyone could stop him. Sometimes we just gave in to his tantrums when we visited other people's houses and he wanted to eat the food that had been laid out. We were really happy that his nursery was really supportive and as we could not send packed lunches from home, the cook prepared special dishes for him. At the nursery, he would actually stop and check the food trolley as soon as it got into the room to check whether there were any forbidden food.
We thought it would be difficult but as they say, you never know until you have tried - Imaan quickly took to his new diet and we saw significant improvements in his diet - he started eating vegetables, fruits and other healthy food after we implemented the changes. We had no problems as home but outside it was a completely different matter. We still faced problems - mainly from other people who didn't understand. They assumed that we were being cruel - starving our son and not letting him eat biscuits and chocolate. Others thought that he would not have enough nutrition, but what they didn't realise that was that he was eating more varied food now. He is really healthy and one of the tallest in his class.
We could immediately see the results whenever he had some of the food depending on what he had eaten - he would space out, have constipation or wake up several times in the middle of the night. On other occasions, he would be jumping up and down on the bed till midnight and refuse to sleep. This was an ongoing battle and we were not really happy because he still had stomach problems - especially constipation followed by loose motion from time to time even though it was much better than before.
Quite recently we went to see Dr. Culp, who carried out a blood test and after looking at his history and symptoms diagnosed that he had intestinal problems and most probably a "Leaky gut syndrome". He recommended that we try out the Specific Carbohydrate Diet (SCD).
I was really anxious when I heard about the diet because it meant avoiding all starches and disaccharide sugers (table, malt and milk sugar). In other words, no grains, starches and all added sugars. The thing I was afraid of the most was the question of what was going to replace the soya milk which Imaan loves. I found out that the answer was almond milk. I have to admit it was difficult and we went slowly, gradually reducing the amount of forbidden foods and replacing them with the allowed ones. We had to do some research for this as I was wondering what Imaan could eat and as it turns out, there'a a lot of good stuff out.
To cut a long story short, we have now sucessfully implemented an enhanced SCD (enhanced because we use only organic food). Imaan now loves the almond milk and he eats a lot of vegetables that he refused to take before. An example, boiled haricot beans, mixed with onions, garlic, carrots, tomatoes and shredded tuna for dinner. Imaan is also eating a lot of fruits and he absolutely loves bananas.
The results are there to see - Imaan has regular bowel movements - he now goes at least twice daily and sometimes thrice and all the stools are normal - type 3 and 4 under the Bristol Stool Scale.
We have picked up some skills in the process. We now make our own almond milk and recently started making our own yoghurt as well. Presently we are experimenting on making different SCD cookies and cakes and have yet to perfect our skills. We will get there in the end.