A few months ago, I visited my son Rhodri in Weston, where he lives in a residential home. When I arrived his carer said he was very hyper that morning. Rhodri was in fact making growling noises, and biting his arms. He continued to do this as we went for our usual walk, and attacked me, grabbing my upper arm and digging his nails in.
It was obvious to me that he had eaten/drunk something which he shouldn’t. On return to his flat, I investigated his kitchen for evidence, and found an empty bottle that had contained Sugar Free 7-Up. I requested to see the home manager. Some staff think that not letting Rhodri eat or drink what he wants is cruel – but what is cruel is allowing him to eat things to which he is intolerant. These things turn him into a monster, who self-harms (his arms get covered with sores and wounds from him continually biting himself), who attacks others and so has to be kept away from other people, and is extremely unhappy and in pain. That is cruel!
The manager said she understood what I was saying and will see that Rhodri only has food/drink that agrees with him, to keep him calm, happy, and a pleasure to be with. As he was the following week – sitting on my lap (yes, he is in his 20s), giving me a cuddle, walking round Weston, going shopping with a smile on his face, making happy noises – and no ‘arm chewing’.
It was shortly after my husband and I separated, when Bryn was 7 and Rhodri 5 years old (both of whom are autistic), that talk in the autism forums on the internet was mainly about dietary interventions.
I had realised when Rhodri was very young that food affected his behaviour and made him hyperactive. These were different foods, over time. It was apples originally, then salted crisps (so I bought the salt’n’shake crisps and didn’t give him the salt packet), oranges, milk or plain chocolate. He also couldn’t tolerate artificial additives i.e. flavours, colours and sweeteners. We stopped all squash, going onto a concentrated fruit squash-like drink, that I bought in a health food shop and kept in the fridge.
It would have been around 1998 that I heard about autistic children having improved behaviour when keeping to a gluten or casein free diet. Gluten is a substance found in wheat and casein is in milk. A GFCF (gluten free, casein free) diet was the ‘in thing’ to try. I had got to the stage of trying anything provided it didn’t cost too much, as I was only receiving state benefits. At that time, all gluten free food had to be on prescription or bought from a health food shop. It’s so much easier (and cheaper) now that there is so much choice in the supermarkets.
At the time, the University of Sunderland offered a urine test to determine whether my children were likely to benefit from a GF and/or CF diet. They kindly offered to test two for the price of one for me, and the tests showed a larger peak on the gluten test, than the casein test.
I tried cutting out casein first, changing to soya milk and dairy-free cheese. These proved to taste terrible, and no discernible change was noticed in the boys’ behaviour. Therefore we went back to ‘normal’ milk and cheese, and instead tried removing gluten from our diet. This showed a great improvement.
Bryn had for some years been suffering from a lot of bouts of diarrhoea. Mostly this would happen on a Sunday night or Monday morning. Then, due to the rule that children had to have 48 hours off school if they had diarrhoea, he was home for Monday and Tuesday. He normally didn’t have another incident and I was left with a lively, perfectly healthy child to keep amused for two days! After a few occasions of this, it occurred to me that every time it was ‘only him’ i.e. no-one else caught this ‘bug’ as normally happens with stomach upsets. In the end, I decided to send him to school anyway and ignore the Monday morning diarrhoea. I would have had to lie and say he hadn’t had it at home, if he later had an incident in school, however this situation never occurred.
When we had gone ‘gluten free’, I discovered, from his father, that Bryn had been eating three Weetabix at his house most Sundays! This confirmed the gluten intolerance as the excess wheat (Weetabix being 95% wheat) caused his digestive system to fail and was why he got diarrhoea on Mondays!
Bryn was a lot better behaved on a GF diet, presumably now not having stomach pains that he hadn’t been able to tell me about. His digestive system recovered and several years later, when foods containing gluten were reintroduced gradually to his diet, he became able to tolerate them again. He now only avoids whole-wheat items (Weetabix, bran, wholemeal bread, etc.). He eats Oatibix for breakfast, this looks like Weetabix but is made from oats which do not contain gluten.
Rhodri, however, is completely different. Gluten intolerance in his case, causes him to have episodes of extremely violent behaviour. I had always thought there was something ‘odd’ about the way Rhodri attacked me. One incident will always stay in my mind. I was sat in a chair in the lounge reading a book. Rhodri, then about five years old, was sat on the floor opposite me, also looking at a book with a smile on his face, looking content. All of a sudden, completely without warning, Rhodri launched at me, growling with his eyes glazed over. He grabbed both my arms and sank his teeth into my shoulder. I had to fight him off, and try to turn him so he was facing the other way and hold his arms down by his side.
This is an example of many hundreds of times that he has attacked me in this way. He has been doing this since he was a baby. It was only around the time of the incident related above, that I realised when he attacked me in this sudden, extreme way (rather than the odd pinch/bite as a ‘one off’) his eyes went ‘odd’, they appeared to have a glazed over / expressionless / staring quality and I began to wonder if he was having a type of epileptic fit. It was like a ‘switch’ had been pressed in his brain.
As well as the ‘attacking’ episodes, Rhodri also suffered from ‘food craving’. This is more than always being hungry – this is continually eating. When we were out on walks, the only time Rhodri didn’t pull me into a shop to get something to eat, was when he already had food in his hand. He wasn’t eating sweets or particularly junk food, he normally had apples, dried fruit, ready salted crisps or a currant bun.
After Rhodri was eating a completely gluten free diet, these extreme episodes of aggression ceased. He still bit and pinched me occasionally, but not to the same extent. Unfortunately his lack of sleep, hyperactivity, need for constant care etc. meant that I continued to need regular respite care for him. I was living alone with two children who both needed 1:1 care.
Rhodri’s school and respite homes were not always reliable in keeping to his diet. When Rhodri ate foods containing gluten his behaviour deteriorated and he went back to his violent attacking episodes, food craving, etc. When he came home for five weeks in the summer holidays, after two half terms of ‘normal’ food, I decided I couldn’t stand any more. I couldn’t bear to watch my loving son deteriorate into a monster. So,over the school summer holidays, I ‘cold-turkeyed’ him from gluten. This meant suddenly removing gluten from his diet, rather than cutting down gradually, which causes less of a problem. This is the same as when drug addicts stop taking drugs, in fact gluten is a drug to people like Rhodri.
It was during this period that I suffered so many bruises from bites and pinches on my arms, that it was impossible to see skin colour, only various shades of purple, green and yellow as I had bruises on top of bruises. I couldn’t even go to the doctors to get my injuries documented as various people suggested. Other patients in the waiting room would have been at risk, as I would have had to take Rhodri with me. Rhodri was excluded from one of his respite homes because of his extremely violent behaviour, but within three weeks, the gluten was out of his system and he was greatly improved, stopped food craving and attacked me less often.
The difference in the child I returned to them, rather than the child they sent home, meant that they realised Rhodri’s need for gluten free and additive free food. The deterioration of his behaviour when they introduced gluten was slower to show a difference, but the great improvement in his behaviour when I returned him to school, made the GP change her mind and prescribe gluten free food again.
It upsets me to read on forums, etc., that parents talk about how their children have sugar-free drinks, then in what seems the next sentence talk about how they attack other members of their family, and can’t sleep, etc. The artificial additives (colours, flavours, and particularly artificial sugar like aspartame) may cause children (and adults) to become hyperactive. I know to avoid drinks for my sons, that say “contains a source of phenylalanine” as that will contain aspartame.
I’ve read how parents think they are helping their children’s teeth – but could this be at the expense of damaging their brains? I always diluted drinks with water, putting half into an empty bottle (of the same drink) and filling both with plain or carbonated water to suit.
When I read about these children, I wish I could go to their houses and look at the kitchens, just like I did with Rhodri (who has his own kitchen) and find out what food they are eating. It might be useful for parents to keep a food diary to help them work out if there are foods to which their children are intolerant, by observing behaviour.
There have been many programmes on TV about additives and hyperactivity, with ‘normal’ children not only autism / ADHD children. We all need to think more about “we are what we eat / drink” when it comes to both our children and ourselves.
Edited by Kate Laine-Toner