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Controversy over the link between autism and the measles, mumps, and rubella (MMR) vaccine has induced stress, guilt, and frustration among parents of children with autism, says a new UK study. The effects on the parents are largely unappreciated by health professionals, the study says.
The authors of the study, which was funded by the UK Medical Research Council, say that although much research has looked at the link between the MMR vaccine, bowel disease, and autism—a link postulated by Andrew Wakefield and colleagues in 1998 (Lancet 1998;351: 637)—and at the effect of the debate in general, there has been “a notable absence” of research into how it has affected parents of children with autism (Archives ofDisease in Childhood 2007;92;322-7).
The authors conducted 10 focus group discussions involving 38 parents whose children had been given a diagnosis of autism after the publication of the Wakefield paper.
They found that many parents of children with autism have been affected by the research. In the focus groups they talked about feeling inadequate, letting their children down, and blaming themselves for their child's condition.
Of the 38 parents, 28 thought that the MMR vaccine may have contributed to their child's autism. But even those parents who did not think the MMR vaccine had a role in their child's having the condition said that the MMR controversy had been upsetting for them.
One parent recalled: “It makes you feel pretty damn rotten. I feel as if at the time I did the best for my boy … I wouldn't have put my child through anything that I think would harm him.”
Evan Harris, the Liberal Democrats' science spokesman, said: “This valuable piece of research shows that the flawed research had more victims than just those who went unvaccinated. It clearly had a bad impact on parents already carrying a significant care burden.
“This gives further reasons why scientists should avoid making sensationalist claims or unfounded conclusions about uncorroborated research findings and why medical journals need to improve their checks of such work.”
The research also showed that many parents felt anger towards health visitors and GPs, who they felt did not appreciate their anxiety when making the decision on whether to allow subsequent children to be given the MMR vaccine. They accused health professionals of having an “inflexible approach,” of being dismissive of their concerns about the safety of the vaccine, and of underestimating the effect of autism on their lives.
One parent reflected: “You have to see autism … as being a really tragic life-long consequence that affects family, it affects friends, it affects siblings, they [health professionals] want to ignore us.”
The researchers concluded that health professionals need to be sensitive to the feelings of parents whose children have autism and to how the disease may affect their attitude towards vaccination in general.
They also say that there is a need to examine whether health professionals have enough training in communication skills to help parents make difficult decisions and to ensure that when new research is published on the safety of vaccines parents and health professionals working with them are promptly informed of the findings.