Photo: Elizabeth Vallance with Dr Ian Ragan
Dr Ian Ragan, Project Director, National Autism Project
The future I’d like to see is one where there is mutual understanding and reconciliation of opposing points of view on research that is aimed at treating the core features of autism.
One of the conclusions of the National Autism Project’s report “The Autism Dividend – Reaping the Rewards of Better Investment” is the need for more research. We point out the shamefully poor investment in research compared with other conditions that affect the quality of life of large numbers of people and have a huge impact on the economics of the UK. Those comparisons with cancer, heart disease and dementia were made cautiously and with careful choice of words because we do not wish to give the impression that autism is a disease for which a cure is an obvious and noncontroversial goal. These other conditions have no upside. There are no oncodiversity and cardiodiversity lobbies and Alzheimer’s disease is not regarded as a shining example of neurodiversity.
Research on these other conditions is therefore rather simple-minded. You look for a treatment that arrests, ameliorates or cures the disease and you collect your Nobel prize. Autism is more complicated and therefore research on autism is more complicated. The National Autism Project’s research recommendations are for the most part intended to provide better evidence of the effectiveness and cost-effectiveness of interventions that impact on the quality of life of the autistic community. They do not address ways of preventing or treating autism but ways of helping people to live with their autism or helping the neurotypical majority to make society more welcoming for autistic people. We therefore address education, health, social care and employment rather than genetics and pharmacology. The closest we come to biomedical research is to call for better diagnostic tools and research to support personalised actions, and Professor Emily Simonoff contributed a summary of drug interventions for the core features of autism and co-occurring conditions.
Is this focus correct? Our research recommendations emerged from the literature review and interviews that were the core material of the report. We were looking at interventions for which there is evidence of effectiveness in order to make an assessment. As Emily points out, you don’t have to spend much time on the evidence of drug effects on the core features of autism because there isn’t any. So inevitably we spent little time on this kind of research and our report developed naturally into a guide for policy as much as a guide to research. Still, basic biomedical research has its place in increasing our understanding of autism and few would object to that. We are clear in our support of basic research in the report.
There may be common cause in the treatment of the debilitating conditions that frequently co-occur with autism, such as epilepsy, but the search for drug or other interventions to treat the core features of autism remains controversial. My own background is the pharmaceutical industry and in neuroscience research so I am not scared of pharma and neither do I believe it is as evil as it is often painted. Scientists in the industry want to help people but inevitably they take a very mechanistic and business-like approach to it – here’s a disease, let’s try and fix it and make some money along the way – and according to this mindset, autism is no different from cancer and dementia. I can understand why my autistic colleagues in NAP might bridle at this. It doesn’t have much to say about neurodiversity.
The biggest current European autism project is EU-AIMS (www.eu-aims.eu), a project of the Innovative Medicines Initiative (www.imi.europa.eu). This initiative, now in its second incarnation, is a partnership between the pharmaceutical industry and the European Commission. The industry commits resources and the Commission provides cash for large multinational collaborative research projects on major medical issues. The partnership with industry means that the projects are goal-driven, and one of the goals of EU-AIMS is “to develop and validate new methodologies for the advancement of novel therapies to treat ASD”. A second IMI autism project is soon to start* and its purpose, among others, is to address “the failure of most previous trials in ASD” through “validation and qualification of stratification biomarkers …….to test drug responses in relevant patient subgroups”. The relevant patient subgroups are autistic people. Never mind the detail, it’s the stark difference in the use of language between these projects and NAP’s report that is so striking.
Is the IMI approach correct? It reduces autism to a disease to be treated, and effective treatment of the core symptoms of the disease is taken as a good thing (though Sandy Starr provides some wise words of caution in the promotional video on the EU-AIMS website). Many people would agree especially parents and carers of children and adults whose autism brings them no discernible pleasure and whose lives are bound by anxiety, and lack of understanding of the world around them. When the difficulty of their lives is expressed in self-harm or harm to others, the idea of a pill to ease their distress and to facilitate communication becomes attractive. Furthermore, some articulate autistic advocates maintain that they would rather not be autistic and presumably would consider “treatment”. Yet others, who have learned to live with their autism and are looking for the neurotypical to catch up and make some accommodation, do not want this. They do not want to be normalised, they do not want to be made to conform to neurotypical rules of behaviour, and they do not want to be treated as victims of a disease. They would like it known that they have potentially relevant and important views on things other than autism if only someone would ask them. Well, I applaud them. People like this made great contributions to NAP and to the report and it was all the better for their involvement.
But the two sides have to be reconciled because both are right. So the future I would like to see is one in which the biomedical/pharmaceutical research community drops the simple-minded and potentially rather insulting use of language that they are prone to, that they show evidence that they understand and appreciate the concept of neurodiversity, and that they think hard about the kinds of autistic people they want to help and ask what kind of help those people really need. On the other hand, I would like to see the articulate autistic advocate community accept that autism for some is an intolerable and cruel burden, that drug and other treatments of core features may be justified, and that they work with the researchers to ensure that what the latter are doing is truly beneficial. Let co-production rule.
Dr Ian Ragan
Dr Ragan is a neuropharmacologist and an independent consultant in the biomedical sector, focusing on project management. He is the Project Director of the National Autism Project. Read more about him here.
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