Many parents of autistic children continue to wrongly blame themselves, says Dr Michael Fitzpatrick, who himself is father to a child with the condition
For 10 years, controversy has raged over alleged links between the measles, mumps and rubella vaccine (MMR) and autism. We have heard much from anxious parents pondering whether to have their babies immunised. We have heard too from parents involved in the ill-fated litigation against the manufacturers of the vaccine, which collapsed in 2003 when the campaign failed to show any evidence of a link with autism.
But, until now, we have not heard from parents of children with autism who are not involved in the campaign against the vaccination. It is extraordinary that, nearly 10 years after Dr Andrew Wakefield suggested a link between the vaccine and autism, the first study to consider the impact of this controversy on families of children with autism has only just been published.
Shona Hilton and colleagues at the Medical Research Council’s public health unit in Glasgow interviewed 38 parents in 10 focus group discussions between 2003 and 2005 to explore how the MMR controversy has affected the lives of those caring for children with autism. They found that, in general, it has “had a negative impact” on parents. Dr Hilton reports: “We found that many parents felt guilty that they may have caused or contributed to their child’s autism.”
One mother quoted in the report said: “Everyone always says ‘Oh, you can’t blame yourself’, but I do blame myself. And I should blame myself, because I should have looked into that I should have questioned that before I took my child along to get them injected.”
One of the most damaging consequences of the campaign is the way in which it has brought parents back full circle to the guilt and self-recrimination experienced by an earlier generation of parents as a result of the influence of now discredited psychodynamic mother/father-blaming theories.
The Glasgow study also found that some parents are frustrated by health professionals’ lack of understanding of the negative impact that the MMR controversy has had on families. The authors acknowledge the key role of health visitors in providing information and support to parents, and emphasise the importance of ensuring adequate training in communication skills.
For Dr Hilton, to counteract the effects of the fears provoked by unsubstantiated claims about the vaccine, it is “imperative that the latest research findings are disseminated quickly to parents and professionals”.
As both the parent of a child with autism and as a GP to affected families, I have been struck by the fact that, while parents can readily gain access to junk science on the internet, quality science often remains buried in obscure journals.
At last, this study has allowed the silent majority of parents of children to be heard. I hope that all professionals involved with families affected by autism will listen and learn.
Dr Michael Fitzpatrick is a GP in the London Borough of Hackney
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. To contact Dr Hilton, call the MRC press office on 020 7637 6011 or 07818 428297