I have been aware of the debate about diet and its possible effect on Autism for a while now. It is a topic that I have been meaning to get around to investigating for a while.
I wish I had sooner!
I recently had an introductory conversation with Dr Paul Shattock from the Autism Research Unit (ARU) in Sunderland here in the UK. The ARU have been conducting research into diet and its effect for those on the ASD spectrum for a while now.
Dr Shattock sent me a copy of a booklet entitled Autism as a Metabolic Disorder: Guidelines for Gluten and Casein-free Dietary Intervention published by himself and his colleagues Paul Whiteley and Lynda Todd this year.
The booklet makes for a fascinating read; indeed, I would go as far to say that it is the publication that has offered me some of the most different, original and invaluable insight in relation to Asperger syndrome (AS) that I have read for a long while.
Some caveats first. It is strongly emphasised at the start of the text how the outcomes are not backed up by substantial empirical research and how much more needs to be undertaken to ensure that the results are statistically sound. The booklet is also written largely with children in mind.
Secondly, it emphasises – quite rightly – how any possible changes in diet should not be taken without referral first to a medical specialist such as a doctor or a dietician.
However, so much of the [anecdotal] evidence presented in the paper resonated with me and my own experiences in relation to diet, meaning that – for me – the results contain significant validity and relevance.
I have taken an interest in diet for a while now in general. Ten years ago now whilst on holiday in Australia, I read a book called Greg Chappell’s Health & Fitness Repair Manual, a best seller by the former Australian cricket captain.
Basically Chappell instigated a new health regime centred on a vegetarian diet and other lifestyle changes such as increased exercise and the taking of supplements such as antioxidants in his late 40’s. The result, he believes, was that he enjoyed more personal energy at the age of 50 than he did when playing top class sport in his mid-20’s!
The book got me thinking – and acting somewhat. Whilst not adopting a vegetarian diet per se, I started to eat more fruit and vegetables and tried to introduce more of them into my diet in general. The result was that I became consciously aware – like Chappell – of how much fresher and more energised I was when I ate non-fat food.
The ARU’s central theme is investigation of gluten and casein from the diet of someone with autism or AS.
Gluten is found in grains such as wheat, barley and rye. It is the sticky material that holds the dough together during baking. Casein is the protein derived from dairy products like milk and cheese. Both are more common in western diets and are often hidden as a result of being contained in processed foods.
Autism is thought to be a metabolic disorder. The paper largely focuses on the “Opioid Excess Theory”. Here Opioids or Peptides – substances formed from amino-acids, that originate from outside the body – affect the Central Nervous System, (CNS).
This produces effects that are “opioid” (derived from opium) that dull the sensations and make someone delirious or sleepy. Intense opioid activity disrupts the CNS systems and so affects perception, emotion, moods and behaviours and cognition among others. All of this resonates for me as a person with Asperger syndrome (AS).
It is thought that peptides result from the incomplete breakdown of certain foods that are gluten and casein based. Conversely vitamins and minerals increase the enzyme performance that breaks down food. Basically, this is in the line with the top-line outcomes identified by Chappell.
The overall picture is basically a simple one, but there are also complex interplays involving a number of other factors. For example, a compound known as IAG may affect the development of autism; people with dyslexia also appear to give a consistently positive IAG result. Other conditions being investigated as a result of opioids include Chronic Fatigue Syndrome (CFS).
Consequently, there are implications of high levels of Opioid Peptides.
Firstly, the immune system and can be under or over activated. Secondly, people with autism may have abnormal sensory processes as the peptides interfere with neuro-transmitters and so dampen sensory impulses.
An example of the latter may be the sensation of clothing on the body which makes concentration difficult. Willimas (1996) speaks about how sensory overload affects the switching of attention from one sense to another. These are outcomes that I have certainly experienced.
It is thought that an inability to filter out events or impulses that are “significant” from those that are not may explain some of the unusual skills exhibited by some autistic people. Extraordinary memory feats, for example, may be due to an inability to forget, rather than, the deliberate retention of material. If sensory filtration processes are faulty, then detailed and inappropriate material will be retained.
One possible personal example may be where a person – say at work – has upset me. I tend to linger on the subject and retain the information that I regard as unjust. This, of course, is not down to any form of superior memory capability.
The Central Executive function of the brain may also be affected by chemical activity. For example, psychological processes or deficits reduce the ability to maintain a problem solving approach by bringing about incorrect organised searches of information or inflexible modes of thought. These lead to inappropriate internal representations. In a work context I have often believed that I may be insufficiently flexible in terms of my thought modes and willingness to consider alternative views or approaches.
Children with autism are thought go through good and bad phases. For a while they may be at peace with the world; then unable to sleep, become irritable, uncooperative and low before feeling fine again.
This, again, very much applies to me and can exert considerable influence in a corporate context. If someone upsets me, or if I cannot realise something I believe to be important, then I can remain low and de-motivated for a considerable while. However, often this can quickly pass and one of the internal techniques I have developed is to remember that I will “get over” something and that, when I do, I will be in the right frame of mind to deal with it. If I is important I wait until this occurrence has come to pass.
It is thought that humans work on a 24 hour cycle upon which many physiological and behavioural activities are based. Excessive opioids may affect this meaning that the biological balance in autistics is affected and results in the body becoming out of sync which affects sleep and makes people irritable.
An inappropriate diet can disrupt this cycle. I have found that, if I eat late, I tend not to sleep well. One of the practices I have tried to introduce into my life pattern is to eat as early as possible in the evening. I do not eat heavily during the day as I t makes me tired, though, as a result of reading this paper, I am going to try and change my eating habits during the day – by not eating sandwiches.
The authors also believe that an affected CNS means people cannot keep still. Opioids may induce “self stimulatory” movements that can develop into complex rituals which become pronounced when under stressed via high opioid production. Movements then become difficult to control.
I believe this is extremely likely and that it has an intensely negative affect in a work context, especially for a manager. Mannerisms such as irregular attention, shifting in my seat and an appearance of possibly not fully being attentive may all have exerted detrimental effects of the perception of me as a manager.
The next stage of the research looks at another hugely important work related facet: motivation. According to the booklet, when a task is completed satisfactorily opioids are released which increase a sense of satisfaction. This reinforces positive behaviours that are repeated in similar situations and lead to motivation.
Where the system is saturated with opioids this mechanism will not function and completion of the task does not result in pleasure. This may be the reason why finding rewards that motivate for an autistic person are difficult. I have often experienced this effect and wondered why it occurs. I am not sure personally if this is totally down to the effects of diet, but after a heavy lunch I certainly feel sluggish. Perhaps changing what I eat at lunchtime will, to a degree, help.
Another effect is identified as Event Related Protocols. Evidence suggests that habituation, or exposure to the same event for people with autism, does not result in diminution of any response as it does with Neuro-typicals (NT’s). Therefore repetition of an activity or experience does not necessarily become boring for someone with autism: watching the same video again and again for example.
I can relate to this. I enjoy watching a film more than once as, often, I struggle to pick up the thread of the story first time around. Watching it again after I have fully understood the central message of the plot, allows me to do this. I wonder if this is why I enjoy doing a similar task over and again at work correctly and efficiently, something I derive great pleasure out of.
Removing gluten from a diet does appears to improve the ability to concentrate and assist sleep patterns. It is important to appreciate though that initially there may be a worsening of effect as a consequence of withdrawal. Ultimately, however, it is beneficial.
According to the authors there is also anecdotal evidence that the absence of pigment compounds in food or the use of supplementary enzymes or nutrients will reduce hyperactivity, This is because the presence of Peptein that breaks down proteins that enables enzymes to work more effectively and which enhance digestion.
Other evidence suggests that the lack of highly unsaturated acids may account for difficulties in autism which are often absent in modern diets. Fish and seafood are the only direct source of some critical fatty acids which are less easily produced in the body. Some people may be highly susceptible to their absence leading to attention and visual-perception difficulties.
I can relate to this also. I have always loved fish and seafood, though always presumed, that it is a personal preference in terms of taste, rather than, as a result of any metabolic effect.
The general, initial conclusion of current Opioid Excess Theory therefore, is that it contributes to a metabolic disorder compatible with the genetic, epistemological, psychological and behavioural phenomena associated with autism. This may provide clues about possible interventions. At the very least a more appropriate diet may be highly advantageous.
The text then talks about the biochemical processes involved in eating. Neuro-transmitters are thought to modulate feeding patterns and appetite. The relationship between the compound 5-HT reduces the consumption of carbohydrates by activating satiaty mechanisms relevant to autism.
This got me thinking also. I have always eaten more than the average person (even though I am not overweight) as it has taken more to leave me feeling sated. Related to this, is a need to eat a certain type of food, of which bread has been a key component.
If I eat a vegetable curry or fruit for example, I do not feel bloated. However, I don’t feel full or satisfied either. This necessitates that I eat something that does. This is something that I am going to explore further with professional assistance.
Diet is also thought to clearly affect neurotransmission. Food additives for example may affect hyperactivity in children with ADD which are ameliorated by gluten and other specialist (Feingold: absence of flavouring and colouring) free diets. Evangeliou (2003) found improvement in the symptoms of autism in 60% of children following a ketogenic (increased fat consumption, decreased protein and carbohydrates).
Again I found this interesting. Bread leaves me feeling full and/or boated. Meat does not even though it is widely believed that a reduction in meat intake is largely a healthy exercise. Subconsciously I don’t feel that if I eat meat it is fattening for me.
Though research is limited, evidence therefore supports a gluten and casein free diet for autistics. Knivsberg (2001), identified improvements in attention, language and cofntive skills; Shattock identified decreased aggression and bowel movements in children. Certainly when I eat a lot of vegetables and fruit, it improves my digestion and sense of well being. This, in turn, has a positive affect on my levels of energy, something that is invaluable whilst at work.
The paper then looks at other effects of the incomplete breakdown of gluten and casein. Firstly, addictive like effects which mean foods like bread provide a “pharmacological high”; this is what I referred to previously. Secondly, altered perceptual processes via effects on the CNS.
One of the final points made is, I feel, also very important: that any timescale involved is also influential. As Greg Chappell asserted in his book, if you try to make radical changes overnight to your lifestyle (diet) the chances are you will be unsuccessful being, as it is, such a major change to the physiological system.
Dietary intervention is a cumulative process and not a “quick fix”. According to the ARU changes in gluten intake may take up to a year to come into full effect. Casein is faster – between 7 and 21 days. However, in both cases short term regressions may occur and so the process is best done incrementally in stages.
Overall, though research is limited it would appear that improved attention, concentration and a sense of calm and of being settled – leading to improved sleeping patterns – is apparent in gluten and casein free diets of people with AS. More variable reports report improvements in communication, physical co-ordination and eating habits also.
These outcomes would certainly seem to apply to me from my own experience. Only last week a lunchtime sandwich left me feeling tired in the afternoon which affected my motivation, work rate and output.
The paper finishes by suggesting that the starting point of any individual programme is to identify those foods which are gluten free. This is what I shall certainly be doing and I will definitely be investigating the whole area much further in detail.
A fascinating paper and real “food for thought”. To re-emphasise in closing: there is always the need to work in conjunction with health professionals and other therapies, i.e. educational.