2014 Survey Conclusion
Parents of children with Autism Spectrum Disorder (ASD) face severe challenges in accessing adequate services, according to a survey of hundreds of parents in the United Kingdom.
This report has highlighted the scale of the challenges faced by parents and children with ASD both in relation to the behaviours and health problems encountered but also in relation to accessing adequate services for support. The survey data indicated that a minority of respondents were struggling to access services from the NHS for basic support with challenges such as diet, nutrition, gut problems and sleep difficulties. In addition, even those who had managed to access the professional services available did not have their problems resolved.
Only 11% of respondents felt that the NHS professionals they encountered understood their concerns about the behaviour and healthcare issues of their child, and the majority (70%) felt that their child’s symptoms were attributed to ASD, rather than being worthy of investigation with the potential for treatment. Indeed, having a label of autism seemed to get in the way of accessing services and potential treatments that would ordinarily be available on the NHS. This diagnostic overshadowing meant that children’s symptoms were often left untreated and when parents sought help privately, they were often able to get at least some of these problems resolved. Many of the comments exposed what might best be called a ‘perception gap’ between parents’ experiences of looking after their children– and trying to deal with the wide range of health and behavioural problems they face – and the official health system that still classifies autism as a developmental disability. The official diagnosis is based upon the observation of cognitive, social and other behavioural and communication problems (the so-called ‘triad of impairments’) rather than any recognition of the wide range of co-morbid conditions that are commonly associated with the condition, many of which can be treated. As a result, parents struggled to access treatment, and what was provided was often inadequate.
Report highlights problems faced by parents of children with Autism, Queen Mary University of London, News story, 15 March 2016.
Given this, it is hardly surprising that almost all respondents (80%) had sought help privately. Parents had paid to see a range of health professionals that included doctors, nutritionists, speech and language and occupational therapists. In addition, however, and often in consultation with privately-accessed professionals, parents were experimenting with diet, nutritional supplementation and safe alternative therapies to see if they could help relieve some of the challenging problems faced by their children. In the vast majority of cases, these experiences had been positive, and for a sizeable number, the changes were reported to be life-changing.
The collective experiences of these parents are a reservoir of valuable testimony about the impact of relatively easy, low-cost, interventions that can improve the lives of children with ASD and their families, sometimes dramatically. Much more could be done to document these experiences and develop a more helpful dialogue between parents and clinical practitioners. It would also be possible to foster wider debate and education about these possibilities amongst NHS staff and thereby help many more families to improve the well-being of their children.
Health and service provision for people with Autism Spectrum Disorder: A survey of parents in the United Kingdom, 2014, Queen Mary University of London, ISBN: 978-1-910195-17-8, March 2016.
In this regard, many respondents argued that they would like to see improved relationships with NHS staff, along with a new approach to training and service provision. There were also calls for specialist teams to be set up, including a range of professionals, who could then fully investigate the range of challenges faced by children with ASD and identify possible areas for treatment and support. This has the potential to be life-changing for children with ASD and their families, and in the long-run, it could also save the wider community from at least some of the financial and emotional costs associated with the condition. New forms of best practice that incorporate routine medical checks for treatable comorbid conditions are now being developed for people with ASD in other parts of the world, and there is scope for extending this learning to the UK. As Perrin (2016, 1; see also McElhanon et al 2014) and his co-authors from the Autism Intervention Network on Physical Health and the Autism Speaks Autism Treatment Network (AIR-P/ATN) explain:
“Whereas, until recently, medical complaints (eg, abdominal pain, poor sleep, or disruptive behaviors) were typically considered part of the disorder and therefore not requiring specific attention, today clinicians throughout the country directly assess and treat these associated conditions. The combined AIR-P/ATN network has developed systematic ways to assess and treat coexisting conditions, focusing on those for which management was previously highly variable or sporadic and has shared those methods broadly with the larger parent and professional communities. The active involvement of families and young people with ASD has helped the network identify key issues for individuals and families and focus its attention accordingly. Although clinicians may have limited new, evidence-based options for treating autism directly, they now have systematic ways to evaluate and manage coexisting conditions. In turn, families have learned about new ways to help their children and improve their functioning and outcomes.”
This approach would greatly improve the lives of the families who took part in the survey reported here, as well as many thousands of others across the UK. In addition, the survey highlights the need for more scientific research into the causes and possible treatments of ASD and the range of co-morbid conditions associated with the condition. Parental experiences highlight the way in which diet and nutritional supplements can make a significant difference to the lives of children with ASD, and this is a vital area for further research.
In summary, this research report has highlighted the scale of the challenges faced by children with ASD and their families, the inadequacy of the current services provided by the NHS, the experiences of parents who are using changes in diet, nutritional supplements and a range of therapies to support their children, and the need for new thinking by those who are training health professionals and designing services for the twenty-first century.