Reflections on The Autism Dividend: Reaping the Rewards of Better Investment
National Autism Project, January 2017
‘Many autistic people experience poor health and poor healthcare, causing pain, distress, premature mortality and above average suicide risk.’1National Autism Project (2017) The Autism Dividend: reaping the rewards of better investment, NAP: London: p83
As a general practitioner who is also the father of a young autistic man, I welcome the National Autism Project’s emphasis on the wider health problems and health care needs of autistic people.
Last year, Autistica, Britain’s leading autism research charity, drew attention to the urgent need for a national response to early death in autism.2Autistica (2016) Personal Tragedies, Public Crisis: the urgent need for a national response to early death in autism, Autistica, London In Personal Tragedies, Public Crisis, Autistica publicised the results of a major study in Sweden which revealed that, on average, autistic people died 16 years earlier than the general population.3Hirvikoski, T., et al (2016). Premature mortality in autism spectrum disorder, British Journal of Psychiatry 208: 232-238 Those both autistic and learning disabled died more than 30 years before their time.
Why do autistic people die so young? For those with an associated learning disability, the leading cause is epilepsy – this kills autistic people at a rate 40 times that of the general population. For autistic people who do not have a learning disability, the key factor is suicide, for which the rate is nine times greater.
Autistic people are also at greater risk from a wide range of physical illnesses, including heart disease and cancers. It remains unclear whether they are more susceptible to these conditions – or they suffer from a lack of awareness of these problems among health professionals, resulting in delays and inadequacies in diagnosis and treatment.
The Autism Dividend appropriately devotes considerable attention to the management of mental health problems in autistic people, including a detailed review of the scope of cognitive behavioural therapy for anxiety. Yet, given the scale of premature mortality associated with epilepsy, it is disappointing that the difficulties of managing this condition are not given similar prominence – no doubt this reflects the dearth of autism-specific research in this area.
In a brief section reviewing ‘pharmacological interventions’, the NAP report echoes the guidelines of the National Institute for Clinical Excellence on the use of ‘atypical anti-psychotic’ medications (such as risperidone and aripiprazole). According to NICE, these drugs ‘should be considered only when a behavioural intervention does not lead to sufficient improvement or where the behaviour is too severe to initiate a behavioural intervention’. In practice, however, anti-psychotic drugs have come to be widely used in people with autism and learning disabilities who have no diagnosis of psychosis, to contain ‘challenging behaviour’, effectively as a ‘chemical restraint’.
In 2016, the Royal College of Psychiatrists discovered ‘compelling evidence that a significant number of people with intellectual difficulties are prescribed a psychotropic drug that, at best, is not helping them’. 4Alexander, R. (2016) Psychotropic drug prescribing for people with intellectual disabilities, mental health problems and challenging behaviour, Royal College of Psychiatrists Working Group,RC Psych, London Though there is little evidence for the efficacy of anti-psychotics in this population, there is considerable evidence of their risks, which include weight gain, diabetes and heart disease. Recognising that, on average, these patients ‘lose ten years of life’, a coalition of professional and voluntary organisations has launched STOMP: a campaign aimed at ‘Stopping Over-Medication of People with a learning disability or autism, or both’.5STOMP Campaign
The STOMP campaign aims to encourage GPs and psychiatrists to consider alternative ways of managing challenging behaviour before starting medication. It also emphasises the importance of regularly reviewing prescriptions, so that treatment is regarded as a short-term expedient rather than as a long-term means of managing behaviour.
How can we improve the physical health of autistic people and enhance both their quality of life and their life expectancy? As a parent, I have been consistently impressed over the years by the high quality of care received by my son and by the willingness of healthcare staff to make appropriate adjustments to his high levels of anxiety and sometimes challenging behaviour. I also recognise that this is not a universal experience and that it needs to be generalised. As a doctor, I am only too well aware of the difficulties involved in the diagnosis and treatment of many of the conditions associated with autism – and of the challenges arising from the current crises of funding, staffing and standards throughout the National Health Service, not least in primary care. The NAP report surveys several initiatives, in the UK and abroad, including various ‘health check’ schemes, conducted by nurses or GPs, designed to improve the care of autistic people. It does not include an assessment of simple but evidently beneficial measures, such as the National Autistic Society’s ‘My Hospital Passport’, a document containing important personal and clinical information.6autism.org.uk – Hospital Passport
The NAP section on ‘health checks’ comes to the familiar conclusion that there is ‘very little evidence at all that was specific to autistic people and there is clearly a pressing need to explore this area through well-conducted research’.7NAP (2017), op cit, p87. I hope that The Autism Dividend will stimulate more research in this and related areas and thus help to bring about the future we would all like to see.
Michael Fitzpatrick is chair of Autistica’s policy and communications advisory board.
Read more about Michael here.