Wakefield’s Wake, Part 3: Trust parents of autistic kids, but verify stories with health records
Health writers too often take patient stories at face value and don't ask for medical records.
It seems rude and obtrusive, perhaps, to ask the parents of ill children to "prove" their stories by providing records. You don't want to accuse them of lying about their case.
Other writers don't want to get involved with the details. They just want a quick quote to create the semblance of balance in the story.
That's why, after Brian Deer's series about Andrew Wakefield's discredited attempt to connect vaccines to autism appeared in the BMJ this month, parents of children with autism were allowed, unchallenged, to speak as authorities on the link between vaccines and autism all over the country:
In El Paso Parents Still Believe In Debunked Autism Study, a mother asked KFOX14, "What is it gonna to take, what's it gonna take for the government to hear us out?"
In South Bend reacts to international debate about autism and vaccines, another mother told WSBT, "Every time he got a vaccination he got worse, he became more violent I would look at studies but then I would get angry. I don't blame the vaccinations but I do know the things that have happened after we've had the vaccinations, where he has regressed."
And the most famous parent who believes that autism is caused by vaccines, Jenny McCarthy, was given a spot on the Huffington Post to do what conspiracy theorists always do, ask reasonable sounding questions to sow seeds of doubt among the vulnerable:
I know children regress after vaccination because it happened to my own son. Why aren't there any tests out there on the safety of how vaccines are administered in the real world, six at a time? Why have only 2 of the 36 shots our kids receive been looked at for their relationship to autism? Why hasn't anyone ever studied completely non-vaccinated children to understand their autism rate?
This is why reporters need to approach parents carefully, with an understanding of the complexities of their experience. Liz Ditz at Thinking Person's Guide to Autism has written about this, as has writer and parent of an autistic child Shannon Des Roches Rosa. Recently, Des Roches Rosa wrote,
There is one thing we all need to remember when speaking to parents who still believe their child's autism was caused by vaccines: those people are in real pain. They want answers and need support. They are likely not getting either, except through the anti-vaccination movement's mostly negativity-filled channels, which is why they become so entrenched and remain in denial.
In the spirit of helping parents get some answers, journalists should ask them for their children's medical records and explain how they are going to be used. The best case scenario is that a reporter will take those records and have them reviewed by independent experts in the field. The second-best scenario is that the writer will use them to provide a clear explanation of the child's history and, at minimum, separate some of the understandable emotion surrounding the issue from the medical facts.
By talking with patients and by comparing their stories with the medical records and against what was published in Wakefield's now infamous 1998 research article, Deer was able to show how the science was twisted to suit Wakefield's money-making scheme.
Deer created a table that showed that "No case was free of misreporting or alteration."
For example, child 11, the child Deer uses as his lead example for the series, "must have proved a disappointment," Deer writes. "Records show his behavioural symptoms started too soon."
How does Deer know this? He knows because he reviewed the child's discharge records, which say: "His developmental milestones were normal until 13 months of age. In the period 13-18 months he developed slow speech patterns and repetitive hand movements. Over this period his parents remarked on his slow gradual deterioration."
Deer shows that this puts the symptoms a month before the boy was vaccinated.
If patients don't have records from doctor's visits or hospital visits, ask them to ask their providers for those records. Ask them if they kept a medical diary, which many of them have.
As research has shown, self-reported health information is often flawed. Most parents - including McCarthy - aren't trying to deceive anyone. When talking to a reporter, though, they may not be able to, on command, provide the clearest picture of the dates, symptoms, test results and other medical facts involving their child.
Next: How to overcome confidentiality rules used to hide shaky science