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

[Guest guest]

http://www.mrc.ac.uk/NewsViewsAndEvents/News/MRC003619

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

autism

30 March 2007

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, 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.”

To set up an interview with Dr Shona Hilton, please call the MRC press

office on 0207 637 6011 or 07818 428 297 out of hours. Please note Dr Hilton

is only available for interview until Friday afternoon.

Notes to Editors

1. MMR: marginalised, misrepresented and rejected? Autism: a focus group

study by Shona Hilton, Kate Hunt and Mark Petticrew is published in Archives

of Disease in Childhood vol 92.

2. Shona Hilton and her colleagues are all based at the MRC Social and

Public Health Sciences Unit in Glasgow. SH and KH are funded by MRC. MP is

funded by the Chief Scientist Office of the ish Executive Department of

Health.

3. Autism spectrum disorders affect approximately 60 in every 10,000

children under 8 years of age in the UK. They are more prevalent amongst

boys.

4. The MRC published a review of autism research in December 2001 which can

be found on it website: MRC review of Autism Research: Epidemiology and

Causes, December 2001

5. The Medical Research Council is dedicated to improving human health

through excellent science. It invests on behalf of the UK taxpayer. Its work

ranges from molecular level science to public health research, carried out

in universities, hospitals and a network of its own units and institutes.

The MRC liaises with the Health Departments, the National Health Service and

industry to take account of the public’s needs. The results have led to some

of the most significant discoveries in medical science and benefited the

health and wealth of millions of people in the UK and around the world.

www.mrc.ac.uk