Genetic influences and people with intellectual disabilities

Citation

Turk, J. (2011), "Genetic influences and people with intellectual disabilities", Advances in Mental Health and Intellectual Disabilities, Vol. 5 No. 4. https://doi.org/10.1108/AMHID.54205daa.001

Genetic influences and people with intellectual disabilities

Article Type: Guest editorial From: Advances in Mental Health and Intellectual Disabilities, Volume 5, Issue 4

It gives me enormous pleasure to welcome you to this themed edition of Advances in Mental Heath and Intellectual Disabilities which focuses on the topic of genetic influences as they relate to the challenges experienced by people who have intellectual disabilities, and how these may be best addressed and helped.

Genetics is a topic that has experienced an extremely chequered and pendular past, popularity-wise, in relation to academia and clinical practice regarding people with intellectual disabilities. Early, absolute, deterministic and rightly denounced schools of thought exemplified by the eugenics movement were correctly discarded as unevidence-based, unethical and inhumane. The benefits of recognising the limitations of these primitive and extreme biological perspectives doubtlessly contributed substantially to the subsequent mushrooming of research into psychological and social determinants of developmental and mental health challenges in people with intellectual disabilities and how these might be addressed through similar approaches.

However, the psychosocial revolution also brought with it equally extreme views of an opposite nature, whereby the contribution of biological, including genetic, factors to our clients’ challenges became often denied and at best viewed as something of a disreputable field of study to pursue. Nonetheless, if one considers the true nature behind such liberating philosophies as normalisation theory and social role valorisation, then, I believe there is no doubt that these genetic and other biological factors are vital in terms of their being considered if we are to be able to assist our clients, their families and close communities in their efforts to attain as normal a life and personal value as is possible.

It is with the above thoughts in mind that I am delighted to present within this issue topics covering two main themes relating to genetics as it applies to people who have intellectual disabilities and associated mental health challenges, namely the ever-growing field of behavioural phenotype research and clinical practice, and the frequently experienced developmental neuropsychiatric disability known to have strong genetic underpinnings, namely attention deficit hyperactivity disorder (ADHD).

Professor Gregory O’Brien, now sadly lost to the UK but flourishing in the antipodean beauty of Queensland, and Ruth Bevan present a scholarly review of current thinking on behavioural phenotype research and clinical practice as it relates to adults with intellectual disability. Gregory’s résumé is complemented superbly by a further publication from the prolific and internationally famed team lead by Professor Chris Oliver of the Department of Clinical Psychology at the University of Birmingham, who writes in this edition in association with Jill Hddell, Jo Moss and Kate Woodcock on the condition Cornelia de Lange syndrome. Professor Oliver’s department have developed a worldwide reputation for their work on this condition, the associated multiple developmental and behavioural challenges that individuals with it have and how these may be treated and ameliorated. Their paper on the communication impairment in Cornelia de Lange syndrome enlarges our knowledge further in important ways, giving greater instruction on how to address the language aspects associated with the condition.

The topic of fragile X syndrome is then focused on, reflecting its importance as the most common identifiable inherited cause of intellectual disability, and autism spectrum conditions, worldwide. Katherine Zwink provides one of the most educating, illuminating and moving accounts of what it is like to be an individual with a genetically determined intellectual disability that I have ever read. I applaud her on her braveness, and determination to produce a report that does justice to the deepness of her feelings in this respect – she has certainly succeeded in her endeavours to do so. Katherine’s article is twinned with that of her mother, Lynne Zwink, who provides her own equally vital contribution on what it is like to be a mother, of not just one but two offspring with fragile X syndrome, as well as having to come to terms with the reality of being a carrier of the fragile X permutation. Lynne was one of the driving forces in the creation and development of the UK Fragile X Society, now a well-established and thriving organisation which has helped so many individuals and their families with the condition and which continues to act as a hub for the fragile X community of families and professionals. Over the years, Lynne and Katherine, and the other members of the Zwink family, have been a constant inspiration to me and have also become personal friends of mine, and so it is with considerable joy that I am able to be in the position to express how enormously indebted I am to them for their candidness and great generosity in agreeing to share their thoughts, emotions and experiences with us so that we may benefit from what they have been through and continue to experience.

The issue of ADHD is addressed by the excellent, lifespan perspective provided by Andrew Merwood and Professor Philip Asherson both from the UK’s premier team studying ADHD in adults. We are only now starting to grapple with the practicalities of providing meaningful and useful services for adults with ADHD who have average intellectual ability, and it is most timely to be able to start reflecting on the needs of the doubtless many individuals with ADHD who also have intellectual disability, often unidentified and even more frequently untreated. Some first steps in addressing this serious service deficiency are provided by Febin Edwin in his own paper.

Thank you for taking the trouble to read this journal edition and to consider the indispensable and indisputable vital role that genetics now plays in our understanding of the challenges faced by our clients with intellectual disabilities and how they may be better assisted.

Jeremy Turk