BRAWD AUTISTICO "Gluten-Free Guinea Pig"

WRITING ABOUT MY BROTHER’S TIME IN SCHOOL for my previous post, BRAWD AUTISTICO “Special School”, got me thinking about my own years in education, and of a little experiment I conducted on my brother for my A-level Psychology coursework. My brother wasn’t the first potential subject- I first tried convincing my teacher to let my grandfather eat an enormous amount of cheese before bedtime to test the myth that eating cheese before bed gives you nightmares. He said that he recognized several safeguarding issues in doing that, so I suggested putting my brother on a gluten-free diet to test the theory that gluten has a negative effect on an autistic child’s behaviour and bodily functions, instead. He thought it was a much better idea.

And so, over a two-week period, I watched my brother intensely, recording his most common behavioural traits. Unfortunately, I haven’t got my coursework at hand to consult (I’m down in Cardiff and it’s lost amongst a pile of cardboard boxes somewhere in my parents’ attic up north), but from what I can recall, I narrowed it down to a total of five common traits:

Hand-flapping

Tensing fingers

Body-rocking

Vocalisations (humming/moaning)

Jumping/hopping around

I also paid close attention to his dietary intake, and kept a diary of everything he ate and drank. In the meantime, I helped Mam find some gluten-free alternatives. When the time came, we introduced my brother to a strict gluten-free diet, and I again observed him, tallying down how many times he displayed each of the recognized behaviours. Once completed, I compared notes. The experiment was a success! My brother did, indeed, show fewer of the traits mentioned when on a gluten-free diet!

I handed in my coursework and won a national award for my efforts. My teacher reminded me that for the results to be conclusive, however, the experiment would have to be extended over a longer period of time. He also noted that his behavioural displays might also have decreased due to a lack of energy thanks to the new diet. But I had my ‘A’ grade, and my award, and I was happy.

The gluten and casein-free diet is perhaps the most researched dietary therapies used with people on the spectrum, and the results tend to show that gluten does, indeed, have a negative impact on the well-being of autistic children. Parents who have put their child on a gluten and casein-free diet report improvements in bowel movements, general health, sleeping patterns, concentration and social communication. However, a survey of English parents with autistic children revealed that just 19% of them had given the gluten and/or casein-free diet a go, and 43& of them had never visited a dietician regarding their child. So why does gluten have such a negative impact on autistic children? And if the evidence is so clear, then why aren’t parents jumping on the bandwagon, and this a time when everyone just loves being on some form of ‘special’ diet?

Gluten is a protein, commonly found in wheat, rye and barley (so beer is a definite no-no!) and is found in stuff like bread, pasta, biscuits and breakfast cereals. Also a protein, casein is found in cow, sheep and goat milk, and all the food products that come from them- cream, yoghurt, cheese, and so on.

Right, so before we even get into it, I can see a problem here, and why a gluten-free diet would be difficult to uphold for many parents of autistic children- many people on the spectrum enjoy what many refer to as a ‘beige diet’, consisting mainly of plain foods such as the ones listed above. For a gluten-free diet to work, there needs to be desirable alternative for each of those foods…

There are several theories as to why gluten and/or casein may be harmful to some individuals, not just those on the autistic spectrum. Some propose that improperly digested gluten and casein in the form of ‘peptides’ (being the building blocks of protein) may have adverse effects on the central nervous system. Others argue that gluten and casein may irritate adverse autoimmune responses in the gastrointestinal (GI) system, meaning your gut.

Indeed, gastrointestinal problems are quite common amongst autistic people, leading to symptoms such as constipation, diarrhoea and a bloated stomach, which in turn affects their mood and concentration. Valicenti-McDermott et al (2006) found that around 70% of autistic children have problems with their gut, compared to just 43% of ‘neuro-typical’ children. Then, in 2016, the results of a study by Ferguson et al found that anything from 23-85% of children on the spectrum have some form of gastrointestinal issue.

So the evidence suggests that gluten and/or casein do have a negative impact on many individuals, both on and off the spectrum, with those on the spectrum being more prone to it. However, there is not enough evidence to recommend that every autistic person goes on a gluten-free diet. In fact, many professionals argue against it…

You see, following a gluten and casein-free diet comes with a few risks; there’s an increased chance of an inadequate intake of nutrients such as iodine, calcium and fibre, which can cause weight loss and poor growth, as well as low energy, which itself could have a negative impact on the person’s mood, concentration and behaviour. So it could make them feel worse than they already did. These risks are further amplified if said individual is already living off of a restricted diet, such as the classic ‘beige diet’ mentioned above.

In fact, the Autism Guidelines for Children and Young People (NICE, 2013) actually advises against the use of restrictive diets “for the management of core features of autism in children and young people”, which was what my own experiment was all about.

A gluten-free diet also comes at a high price, and it can also prove to be an inconvenience, as not all food suppliers cater for gluten-free diets.

There are also those who disagree with the link between autism and gastrointestinal problems and gluten or casein altogether, arguing that a link between autistic people and gastrointestinal problems could be explained by any number of things.

‘PICA’ is a condition whereby an individual persistently craves non-food substances. These may include anything from mud, sticks or cardboard. It is very prominent in autistic children, but may also be a symptom of an underlying nutritional deficiency, such as low iron levels. PICA can be life-threatening, with reported incidences of children dying having choked on inedible objects. There is also the issue of ‘cramming’, whereby a child on the spectrum will ram food into their mouths and swallow without chewing, often resulting in reflux and abdominal discomfort. It is a common trait amongst autistic children, linked to sensory issues.

Autistic children and young people also tend to have higher stress levels than the average person, and there is already a proven correlation between stress or anxiety and gastrointestinal problems.

Although not directly linked with autism, others recognize the importance of fructose and fructans on individuals with IBS, with the evidence for the proposed link being described as “substantial.” Or it may be even be a simple case of an undiagnosed allergy- around 3-6% of children have a food allergy, with the percentage increasing each year (BASACI, 2011).

We didn’t maintain the gluten-free diet when the experiment came to an end. Unfortunately, doing so would have been too financially draining, and Mam also found it difficult to obtain gluten-free alternatives in our area.

We also recognized that gluten is by no means the cause of autistic traits, and a gluten-free diet is not some ‘miracle cure’, and has never been heralded as such. The benefits to my brother would have been, from our own perspective, minimal, and he seems happy enough with his current diet. As Mam said, “Food is one of his few pleasures in life”, so why take that away from him if he shows no sign of being in pain due to his current diet, right?

But if you do suffer from gut problems or have an autistic child of your own and think a gluten-free diet may benefit them, then it may be good to consult a dietician first for some professional advice.

It just might change your life!