Kenneth Aitken is an experienced psychologist with a special interest in autism spectrum disorders (ASDs). His recent book, Dietary Interventions in Autism Spectrum Disorders examines the effects that changing a persons diet can have on the symptoms and behaviours associated with different forms of autism. We asked him a few questions.
When and why did you first become interested in Autism Spectrum conditions?
I did my first degree in Psychology at Edinburgh University, and, at the time, the particular strength in the Department was in Developmental Psychology. I was lucky to have a number of inspiring tutors and lecturers. People like Margaret Donaldson, the author of Children’s Minds; Colwyn Trevarthen, with whom I went on to write Children with Autism; John Marshall; Tom Bower and Lynne Murray had a major effect on me. My interest in Developmental Psychology, and reading many of the books and papers at the time which theorised about the causes and consequences of autism (Virginia Axline’s Dibs: In Search of Self, Sula Wolff’s Loners, and papers on ‘Savant’ autists like Nadia and on the private languages sometimes developed in twins) stimulated my interest in autism and what made people with autism have such a special view of the world.
I went on to do my clinical training at the Institute of Psychiatry in Denmark Hill and was lucky to work with and be taught by a number of the leading figures of the day including Monte Shapiro, Lorna Wing, Bill Yule, Patricia Howlin, John Clements, Barbara Wilson, Michael Rutter, John Corbett, Peter Hobson and Peter Hill and gained a lot of ‘hands-on’ experience of working with autistic children; with behavioural disorders; and with organic conditions like epilepsy.
One of the first things I began to learn was how far removed the theories I had studied at University were from real families and the issues they faced. Working with people as disparate in culture as Rastafarian families in Brixton and Lobavich families in Golders Green raised issues far from those we had discussed and debated in the tutorials and lecture halls of Edinburgh. Anne Fadiman’s wonderful 1998 book on a Hmong families tragic struggle to understand a Western medical approach to their child’s epilepsy would have been a good starting point if it had been available.
At an early stage I realised that the best way to effectively help families with ASD involved working across disciplines, with a clear understanding of the psychoeducational approaches which can help, the communication skills which are often needed, the neuropsychological issues, and various biological factors from the dietary and digestive to the neurological and the genetic.
I have always found autism a fascinating area, and, even when training was constantly surprised at the dedication of families to dietary and intensive intervention techniques, something that I seldom encountered in families coming to terms with children who had other types of difficulties.
What do you like most about your work?
I find the neurodevelopmental disorders a tremendously exciting area to work in. Both clinically, with the amazing breadth of clientele, and on the research side with the tremendous developments and changes in our understanding at all levels from the behavioural to the genetic, and how breakthroughs in our understanding are informing best practice.
The ASDs, as we now refer to them, affect all races and ethnic groups so far studied (two conditions which affect Amish communities have recently been reported – CDFE syndrome and Cohen syndrome, contradicting the view that their lifestyle somehow prevented autism from occurring). Having had the opportunity to observe and work with people from the UK, various parts of Europe, North America, Australia, the Gulf states, Iran, India, Pakistan, Japan and Korea the similarities and differences are striking and enlightening.
Recent work on Arab families with shared ancestry has highlighted a group of previously unreported recessive genetic causes. The more we start to understand the biologies, of which there are many, the more we realise that different approaches can help different people with ASD, and that the same approach does not work for everyone.
What I enjoy most is being able to help improve the quality of life of people with conditions that can often be changed.
After many years of working in the area I find I am still constantly learning and developing my thoughts and practice.
Who or What inspires you?
I am inspired by the strength of purpose of many of the children and families I work with, and by what can be achieved with the right diagnosis and the right help.
I have been inspired in my clinical and research work by a number of people – the work of both Michael Rutter and Christopher Gillberg has been tremendously influential on me. From the influence of Rutter’s popular Maternal Deprivation Reassessed on my initial fumblings in the field as an undergraduate to Gillberg and Coleman’s The Biology of the Autistic Syndromes on my present views of the autistic spectrum disorders.
In my day-to-day work with families, I think the influence of John Clements and Barbara Wilson during my training were major factor in helping me see that the most important aspects of any condition are to do with how it affects that person and their daily life, and in identifying what is most likely to be beneficial for them.
My interest in biological and genetic factors in ASD comes from talks by and discussion with a range of clinicians and researchers in the area: Mary Coleman, Christopher Gillberg, Randi Hagerman, James Harris, Alison Kerr, Jeremy Turk, Michele Zapella, Huda Zhogbi, and what I have learnt through various stimulating groups like the European Autism Information System, the International Society for Autism Research, the Scottish Autism Research Group, and the Society for the Study of Behavioural Phenotypes.
What are your hopes for the future?
I am in the process of finishing parents and professionals versions of an A-Z of Genetic Syndromes in Autism for JKP. These will appear next year. There are now over 80 genetic conditions reported in association with ASD, and so far there is no easy way of accessing the information on many of these or on their implications. New information is appearing all the time, and I hope these volumes will provide up-to-date useful resources for those with, those living with, and those working with ASD.
In the next few years we should reach a stage where the various ‘alternative’ groups who currently advocate methods not endorsed by mainstream ‘Evidence Based Medicine’; the clinical services straining to provide basic services for families with ASD, also working to a large extent without an adequate evidence base to their practice; and those carrying out ‘Ivory tower’ academic research begin a useful dialogue to move things forward – where there is strong anecdotal evidence, we should commission or be in a position to carry out adequate research, not just wait for it to be done.
The mechanisms which lead to research in the UK at present depend on researchers deciding what they want to do and the funding agencies deciding whether it is well enough thought out. This is all well and good, but does not necessarily lead to the important questions being addressed. The MRC research review in 2001 identified a number of important areas where research was required and almost £3 million in ‘ring-fenced’ funding was made available, but, as research proposals addressing most of these issues were either not forthcoming or not deemed adequate, most of these questions remain unaddressed or unanswered. We need to review the way that new research is generated and be proactive in commissioning and funding research. This is happening elsewhere but often as a result of charities like Autism Speaks and the Simons Foundation funding studies into more controversial areas rather than by normal routes.
Families mainly want research into what helps while much of the research carried out currently has a different focus and agenda. I fully agree that with therapies where there is evidence of risk/harm that evidence needs to be made public and the approach discouraged. The situation with much in the area of ASD is that there is a weak evidence base – a lack of evidence rather than evidence of harm. It seems sad that currently we deny families support in implementing therapies which are safe but where the evidence base is weak, when we could be using such cases to collate an evidence base to establish how helpful they are, especially when so many families ‘vote with their feet’ and try alternative therapies in any event.
It has become clear to me that many of those working in the area of ASD may have an excellent understanding of their role or their own profession’s contribution, but often have little understanding of the role of other professions. In some areas, early diagnosis and psychosocial interventions are well established and resourced but there is little assessment of genetic or biomedical issues; gastrointestinal and immune problems are often overlooked or ignored; when families move areas services are often structured differently so that a child has to move from, for example, an ABA to a TEACCH based programme. These problems are in part a lack of central guidance and coordination and lack of a clear national framework – NAP-C (NIASA 2003) has been all but impossible to implement in England and Wales and the recent SIGN guideline in Scotland (SIGN 2007) has been unable to identify a sufficient evidence base, for most aspects of care and treatment, to give clear guidance on what should be being done.
If we wait on a robust evidence base we will still be awaiting the evidence in a decade – we need to partner research with what is being done in practice – we are teaching children with ASD without knowing what way is best; families are trying alternative treatments as we speak and the outcome of this is being lost; clinicians are using medications like risperidone for challenging behaviours and methylphenidate for overactivity but, (if we exclude the RUPP centers in the USA) information on whether this is proving effective is being lost, while the development of ‘best practice’ is based by and large on ‘anecdotal’ case reports. As people only tend to write up and publish successful cases, this can easily lead to unrealistic expectations of beneficial outcomes.
Personally I don’t believe we should be waiting on the Holy Grail of a wonder treatment for everyone with ASD, however appealing this may seem to some. Some people with ASD symptomology neither need treatment nor want it.
However, the ASDs are a group of specific conditions with overlapping behavioural phenotypes, many of which have or will prove to have specific treatments, and some of which can have major negative effects on the quality of life for many who have them – sleep problems, skin problems, severe distractability OCD, anxiety, reflux oesophagitis, self-injury and epilepsy are things which most of us would want to avoid having if given a choice. We may not currently be in a position to say what is best for each and every ASD condition, but we don’t need to wait on research based on a ‘one size fits all’ model to collate information on what has worked for whom. Various databases now exist which have information on the genetics, ADI-R and ADOS scores on large samples of people with ASD that could easily be mapped against treatment responses to yield a useful starting off point.
At the moment, we don’t even have a clear idea of the numbers of cases or whether prevalence is the same across the agespan. We know the number of people identified but this falls far short of the numbers that should be there based on the epidemiology. There is a lot of work still to do, and I hope to be able to contribute to this as best I can.
My hope for the future, in the best of all possible worlds, would be to be part of a Scottish Centre for Neurodevelopmental Disorders, help to establish a cross-disciplinary parent-professional partnership, identifying priorities and helping to carry out and enable relevant ASD research. I look forward to the time when for the majority, a specific diagnosis can provide a clear idea of why an individual may develop an ASD, and when associated problems can be avoided by prompt targeted intervention.
What is your favorite book or film?
I am a voracious reader, but much of my reading at the moment is on clinical or research issues with little time left for leisure reading.
When I am taking time out for myself, I like to read something well crafted – I am a great admirer of Anne Fadiman’s writing (see: Ex Libris; The Spirit Catches You and You Fall Down); something light and amusing like a Terry Pratchett ‘Discworld’ novel; or something more exotic like Patrick Leigh Fermor’s A Time of Gifts which makes me feel humble about my lack of application in English when I was at school.
My favorite film? – a difficult choice, I tend to go to the cinema to relax and switch off, usually with the family (with two adolescent girls, a list of recent filmgoing would reflect more of their interests than mine). I like some American comedians – Steve Martin, Woody Allen, and some ‘classic’ European films like Gabriel Axel’s Babette’s Feast.
Copyright © Jessica Kingsley Publishers 2008