Study reveals impact of the MMR controversy on parents of children with autism

Researchers have found that the MMR controversy caused parents of children with autism feelings of stress, guilt and frustration. Their study is published in Archives of Disease Childhood.

In the course of 10 focus group discussions across the UK between 2003 and 2005 involving 38 parents of children with autism, scientists from the Medical Research Council (MRC) discovered the effects of the uncertainty caused by the MMR controversy on these parents. Their aim was to assess how the parents had been affected and identify their specific needs to inform how these might be met in future debates around immunisation.

In 1998, Andrew Wakefield and his colleagues published an article in which they claimed to have found a link between the MMR vaccine and the onset of autistic spectrum disorder, although most of his co-authors subsequently disassociated themselves from the suggestion that there was a link between the vaccine and autism.

The controversy that followed affected parents' decision-making with regards to MMR vaccination. The Health Protection Agency's figures show immunisation rates across the UK population fell from 92% before the controversy, to 80% by 2003/04 (http://www.hpa.org.uk/infections/topics_az/vaccination/cover.htm). Vaccination rates have since started to increase again as parental confidence in the vaccine has begun to recover. However, until now no research had looked at the impact of the MMR controversy on the parents of children with autism.

Dr Shona Hilton and her colleagues at the MRC Social and Public Health Sciences Unit in Glasgow found that many parents of children with autism have come under great stress and pressure as a result of the scare.

Dr Hilton found that some have experienced agonising uncertainty as to whether the MMR vaccine may have provoked their child's or children's autism. Many have wondered whether they are to blame for their child's condition or felt they had "let their children down" by deciding to vaccinate. Even those who felt that their child's autism was not linked to the MMR vaccine, either because of family history or because they had avoided vaccination, had suffered as a result of the ambiguous advice they felt that they had received.

The discussions also showed that most parents found it extremely difficult to make subsequent decisions about further vaccination for their children with autism and later children. Many parents felt let down by health professionals and health visitors as well as GPs. This appeared to be a result of the lack of clarity and consistency in what they were told. It may also have been a result of the perceived lack of empathy with and understanding of the realities of caring for a child with autism.

Dr. Hilton said: "It is clear from a review of the literature that there has been a lack of follow-up of the impact of this health scare on those likely to be most directly affected - those living day in and day out with children with autism. These parents in particular have been under a huge amount of stress about the possible impact of their decision to vaccinate or not. Often, those they turned to for guidance and advice, their health visitors and GPs, were not able to provide them with the support they needed.

Dr Hilton added "we are planning to conduct further research into whether health professionals feel that they are well-enough equipped to deal with parents during such health controversies, and how they can be better-supported. We hope to be able to develop new information materials and to identify other support that health professionals need in the difficult task they face of communicating with parents at the height of any future health controversies."