MediaATT Autistic Mind. By Dr. Lorene Amet, DEA, DiplBiotchenol., D. Phil Autism File Issue 33 (2009) ATT: Self-Injurious Behaviour in autism: What are the issues and what should we do about them? By Dr. Lorene Amet, DEA, DiplBiotchenol., D. Phil. Autism File Issue 32 (2009)
The Autism Treatment Trust clinic featured in a series of radio programmes on Radio Scotland aimed at looking into issues surrounding autism. You can listen again to these programmes by contacting ATT to ask for a CD copy of the programme.
A NEW clinic opening in Edinburgh this month promises hope to the parents of children with autism, by offering an integrated approach based on the latest research. The clinic, which is being launched by the charity Autism Treatment Trust (ATT), may be the first of its kind in Europe. It takes its lead from clinics in the US which are based on the idea that the condition - traditionally thought to be untreatable - can be improved by a combination of biomedical and educational approaches. The team behind the clinic, which will employ a medical doctor and a psychologist, are themselves parents of autistic children, who have faced the choice between a battle to access what they believe is appropriate treatment on the NHS and costly visits to clinics abroad. Lorene Amet, the clinic's principal scientist, who has a ten-year-old autistic son, Lloyd, says: "As a parent you get extremely frustrated when a child is sick. We know autism is very complex, we don't have all the answers, there is no one magic cure. But we know these children deserve to be investigated at a medical level, and when we find abnormalities, they deserve to be addressed like any other individual. "The traditional model of autism is that it is untreatable, and that has been entrenched for 60 years. We believe enough evidence has been published and been subject to peer review to prove it is treatable. A combination of biomedical and educational approaches can bring a number of children to some sort of recovery." Bill Welsh, the clinic's chairman, who founded ATT when his grandson was diagnosed with autism, says: "What we hope to achieve is a fresh dynamism in the treatment of autism, a bringing together of approaches to help each child overcome their behavioural problems and experience a fuller enjoyment of life. The clinic is seeking to provide joined-up thinking. Too many parents have to go here and there for scraps of information and join it all together themselves. We intend to change that by looking at the biomedical, the behavioural and the medical as a complete package." Current research on autism around the world suggests a possible new understanding of the condition, that it is caused by a mixture of genetic and environmental factors. Studies point to high instances of gastrointestinal problems among autistic children, and a study in France found that autistic children tend to have a significantly high level of heavy metal toxicity in their bodies. One possible explanation for the significant increase in the number of cases of autism - which now outnumbers Down's Syndrome, cerebral palsy and childhood leukaemia put together - could be changes in the environment and nutrition. Dr Gordon Bell, one of the directors of ATT and a biochemist specialising in nutrition - and who has a 12-year-old autistic son, Lewis - says the normal approach in this country can be disempowering to parents: "When a child is labelled as autistic, the health service in Scotland and England puts up the shutters. Professionals treat the label rather than treating the underlying medical condition. I remember when my son was diagnosed eight years ago, there was a feeling of hopelessness, you're not given anything at all to give you any kind of hope, although I do believe my wife was offered Prozac. When I started looking at it as a scientist, I realised we should be doing these tests." Another parent spoke of his feelings of frustration when his son was diagnosed with autism: "We already had three children and we knew how they develop, then we found we had a child who, at the age of 20 months, went into meltdown, went from a happy well-developed boy to someone who slashes sticks, loses language, doesn't react to anything, not even a noise right in front of his face. When we were told he had autism, we were told there was little or no prospect of recovery, of him ever speaking or enjoying life. "I wanted to go further and investigate. When I travelled the world to speak to others who made a difference for their children, I began to think there was a hope of success." The clinic offers parents an initial consultation at a cost of £120. They then have the option of undertaking a series of tests that look for 200 different medical markers, leading to a detailed report and a second consultation, at which the child is seen by the clinic's doctor and psychologist. An individual package of treatment will then be devised to suit the child's needs. At present, the clinic operates on a private not-for-profit basis, but organisers hope, once it has proved its worth, its services will be available on the NHS. Welsh says: "We hope in time there will be a partnership with the NHS, that they will then feel able to refer children for analysis in this holistic way. "We don't know all the answers, but we can certainly give parents hope and point them in the right direction."
Magazine of the National Autistic Society, Winter 2006 Opinion - biomedical interventions in autism There are those working in the field of autism - and many parents - who believe that autism is treatable. Dr Lorene Amet of the Autism Treatment Trust in Edinburgh gives her opinion of the available research. Today's parents who receive a diagnosis of autism for their child are less likely to accept the verdict of 'untreatable', particularly when no plausible explanation is offered for the child's withdrawal into autism following a period of normal development. In addition, the explosion of autism diagnosis throughout the developed world continues to throw an uncomfortable spotlight on the traditionalists within the autism community. The US Centre for Disease Control has stated that 'autism is the fastest growing childhood developmental condition in the USA', with one child in 166 now affected (1). A similarly alarming statistic has been established, by the Medical Research Council in the UK in 2001 (2), and more recently from official UK governmental surveys with as many as one child in 100 affected by autism (3). A careful review of over 50 autism prevalence studies has also confirmed that rates for autism have risen from the 5 to 10 per 10,000 to 50 to 80 per 10,000 (4). A previously rare childhood developmental condition seems to have become common in ten years! This does not appear to be a matter of changing definitions, ascertainment bias, or case-finding methods. What this may tell us is that the role of environmental factors in autism is greater than previously envisaged and that the often-quoted triad of impairments that define autism is likely the result of complex interactions between genetic and environmental factors. What these practitioners advocate is that autism is treatable The biomedical approach to autism is currently endorsed by over 500 medical doctors throughout the world in a total of 23 countries (5). What these practitioners advocate is that autism is treatable. They uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive. It is only through thorough examination and biomedical testing that the individual child's symptoms can be understood and treatments tailored accordingly. The biomedical movement promotes diagnostic and treatment options that are consistent with the evolving picture of the environmental cause. Further, they acknowledge that each child is different, and his or her laboratory testing and response to treatment should be the guides to a clinical intervention. It also recognizes that children with autism have a set of characteristic clinical complaints. And these are very well substantiated in the current peer-reviewed medical and scientific literature. Let's look at one particular area: the immune system. There are, to date, 98 peer-reviewed publications that describe abnormalities in immune function in autism. Let's just discuss one of them, a recent report by Vargas (6) on 11 post-mortem brain tissues of children with autism and six living patients with autism that showed active neuro-inflammation in several brain areas and proposed a key pathological role in autism. Can we really be so certain that alleviating this distress would not resolve some, or perhaps all, of the behavioural features these children can display? In the areas of gut pathology so commonly reported in autism, and judged by the Medical Research Council in 2001 as being an important area of research (2), there are currently 77 peer-reviewed papers describing the abnormalities seen in autism. Regarding the evidence for heavy metal toxicity as being involved in autism, there are at present, 32 reports that suggest that it could be implicated. There are equally a large number of reports that show that our environment is increasingly contaminated by these self-same toxins. The other areas that have been found to be a possible association with autism in some children are diet and food sensitivity; profound vitamin, minerals, and fatty acid deficiencies; some abnormalities in purine metabolisms and essential amino acids levels; as well as some cases with hormonal or cholesterol metabolism abnormalities. How would these deficiencies have been found without thorough investigation? The investigations and treatments proposed by the biomedical movement are thus divided into five potential areas of disturbance: heavy metal toxicity, pathologies of the gastro-intestinal system, diet and food intolerance, abnormalities of physiological and cellular metabolism with nutrient deficiency, and pathologies of the immune system. From the results obtained, treatments specific to each child's profile are implemented. The treatments consist primarily of vitamin, fatty acid, and mineral supplementation, together with pro-biotic normalisation of gut flora and dietary modification. In some subjects, antibiotic and anti-fungal treatments, as well as heavy metal removal through detoxification, are advocated under strict medical supervision. If evidence of gut inflammation is found, attempts are made to identify and prevent the source of inflammation and to diminish the toxic inflammatory processes. “There is at present insufficient published evidence for efficacy of the biomedical approach beyond anecdotal reports" Whilst the literature in autism does amply support the many physiological, immune and toxic factors that may contribute to the condition, I would agree that there is at present insufficient published evidence for efficacy of the biomedical approach beyond anecdotal reports. However, one should bear in mind that biomedical interventions that some feel have been shown to lead to recoveries are complex, comprised of several inter-dependent parameters, and carried out over a long period of time, usually for a minimum of two years. Furthermore, often a biomedical intervention is coupled with an educational programme. Under these conditions, it is simply not possible - or even ethical - to use a classic randomised controlled trial (RCT) design to evaluate treatment efficacy. Diagnosis models In addition, up to now, the majority of the published studies use the broad 'behaviour-based' diagnosis of autism as a study group. Until we refine the diagnosis using the 'clinical' underlying features, we will simply be stuck in our treatment evaluation studies. None the less, the biomedical movement offers many exciting possibilities for intervention that should be considered by parents, autism groups and the scientific community." Please note: The NAS does not necessarily endorse the opinions expressed in this article. The NAS is not a medical charity and therefore cannot comment with authority on the value or merit of medical interventions for the treatment of autism. The absence of a reliable and trusted evidence base in autism treatments has led the NAS to establish a separate charity, Research Autism, to specifically establish scientifically-evaluated approaches to the growing number of interventions available. The NAS advises parents to seek independent advice on all therapies and interventions prior to embarking on any programme. References
|
ATT Feature on BBC Radio Scotland
COMMUNICATION