Genes, Autism and Psychological Spectrum Disorders
Patrick Walsh using the Spectrum of Opinion School Resource Pack to teach an A-level Psychology class at Robert Napier School
Photograph by Sarah Norcross
See other photographs related to this project below
Spectrum of Opinion: Genes, Autism and Psychological Spectrum Disorders is a Progress Educational Trust (PET) project devised and overseen by PET Communications Officer Sandy Starr, and supported by the Wellcome Trust. The project was originally conceived as a response to autism expert Simon Baron-Cohen's call for an informed public debate about developments in genetics and our understanding of autism, following a media furore in 2009 about the prospect of genetic testing for autism. This episode highlighted shortcomings not only in public and media understanding of the relationship of genetics to psychology, but also in the divergent interpretations of this relationship promulgated by experts in different fields.
The three principal objectives of the Spectrum of Opinion project are:
- to improve public and professional understanding of the respective genetic and non-genetic aspects of spectrum disorders;
- to initiate a debate about the very concept of the 'spectrum';
- to evaluate the issues arising out of this debate, and translate them into a resource for use in the classroom.
The five principal outcomes of the Spectrum of Opinion project have been:
- a public event entitled From Autism to Asperger's: Disentangling the Genetics and Sociology of the Autism Spectrum, which took place at the Houses of Parliament on 20 October 2009;
- a public event entitled Marked for Life: Are Genetic Markers Helpful in Understanding Psychological Disorders?, which took place at the Royal Society of Medicine on 3 March 2010 (a video recording of this event is available here);
- the creation of a School Resource Pack, whose use has been piloted at Robert Napier School in Gillingham, and which is now freely available for anyone to read and use;
- a presentation given by Sandy Starr at the conference Autism, Ethics and Society, which took place at University College London on 28 June 2010 (an audio recording of this event can be downloaded under the session heading The New Translational Genetics and Its Ethical Challenges here);
- the appearance of Sandy Starr in the film Designing for Disabilty: Autism, made by the National Building Specification for its Learning Channels resource.
PET believes that the spectrum, and the relationship between genes and psychology that it hinges upon, are ideal subjects for public debate because they exemplify many of the challenges that characterise modern biomedicine and the public's understanding of it. Most notably, they exemplify the tension between different approaches to diagnosis, such as phenomenology and aetiology.
Initially, diagnostic categories tend to be constructed from prognosis and clinical descriptions of a disorder's presenting features. Subsequently, diagnostic categories tend to be constructed from an improved understanding of a disorder's biomedical causes. Categories arrived at via these different routes may coincide, but when they do not, then this may prompt a revision of the original category.
This potential disparity between diagnostic approaches is especially marked in the case of genetics and psychology, and may be further complicated by a number of other factors. The burgeoning field of epigenetics studies the biochemical mechanisms whereby gene expression may be selectively silenced in different tissues of the body and at different points during an individual's development, complicating our understanding of heritability. Then there are the many non-biomedical factors that can contribute to a spectrum of behaviours and impairments, and are the province of disciplines such as sociology.
The School Resource Pack created by PET as part of the Spectrum of Opinion project has been piloted at Robert Napier School in Gillingham, and PET has now made the pack freely available for anyone to read and use. It can be downloaded as a .pdf document (605KB), or alternatively is available in an online version.
We are keen to hear from anyone with feedback or ideas about the pack and its use, and we are especially keen to hear from anyone interested in helping PET to secure funding to develop the pack further. Please contact Sandy Starr at firstname.lastname@example.org
Contributors to the Spectrum of Opinion School Resource Pack