This story describes an intervention designed for months-old infants at risk for developing autism based on family history. The intervention involves videotaping parents interacting with their children and then having a therapist provide feedback that helps improve these interactions. We thought the story didn’t do quite enough to explain what happened in the study and what it might mean for children at risk of autism and their parents. Importantly, it didn’t alert readers to the fact that the main findings were not statistically significant — a limitation worth noting.
Federal health officials estimate that 1 in 68 Americans under age 21 are affected by autism. Along with being an obstacle to a high quality of life for affected individuals and their families, autism, officially called Autism Spectrum Disorder (ASM), places a significant financial strain on families, schools and society at large. The average additional costs for medical, behavioral and speech therapies for a child with autism ranges from $17,000 to $21,000 annually, according to the CDC. Some of the newer, more intensive therapies that have been introduced over the last decade add many thousands to the cost, and yet experts say there is a growing need for more and better therapies.
This story did not discuss costs of the video intervention. However, other high-end, intensive therapies now in use add substantially to the cost of caring for a child with autism. For example, after only a brief online search, we found information suggesting that the Early Start Denver Model (ESDM), a behavioral therapy, costs around $5,560 per month. It is our belief that anything that is judged to be good enough to be headlined as “may curb autism” is also worthy of a cost estimate, even by estimating the cost of something somewhat comparable.
The story offered just one sentence describing the benefits of the study, but it included no quantification: “After five months, infants in the families in the video therapy group showed improvements in attention, social engagement and social behavior, according to the study published Jan. 22 in The Lancet Psychiatry.” How big were these improvements? How significant were they?
The harms of this intervention could include the time and expense of an experimental approach whose benefits were not shown to be statistically significant in the one study reported on herein. The study abstract notes the possibility of negative effects in language and responsivity to vowel change. The story didn’t touch on any of this. It emphasized potential benefits and ignored potential harms. In our view, there is a harm in this kind of reporting.
We give the story credit for explaining high up that more study is needed before this potential therapy can be embraced. And we like that it ended on a cautious note, quoting an expert who says that these future studies “will need to include a larger, more diverse sample population and need to look at developmental outcomes over a much longer period of time.”
Nevertheless, we feel the description of the study could have been more thorough. We know that 54 families took part in the 5-month study, that the infants involved were aged 7-10 months old and the study included a control group — and that’s useful context. Unfortunately, the story did not alert readers to the broad range of development disabilities that fall under the term “autism.” Symptoms can range from very mild and include children with intellectual gifts to very severe emotional, mental and medical disabilities that hamper a child’s growth in all areas of their life. It would have been helpful to provide that background and to discuss where these children fell on that spectrum.
But more importantly, our analysis of the study itself shows that for all the outcomes assessed, some had positive results, some were negative, and most had confidence intervals (CIs) that included 0 — meaning that the study couldn’t rule out the possibility of no benefit or a small negative effect. The study authors called attention to this limitation in the study abstract when they wrote, “The estimates have wide CIs that include possible nil or small negative effects.” We think the story should have called attention to the fact that the results were not statistically significant. When this is highlighted even in a manuscript’s abstract, it’s almost impossible to ignore. You didn’t even need to read the full paper to get this caveat.
When a story fails to give adequate description of the study group, as mentioned above, then it actually didn’t even provide enough detail to be given any credit for avoiding disease mongering. The best such a story can be graded is N/A.
We commend the story for including interviews with the lead author of the study as well as two experts who appeared to be unaffiliated with the research. However, only a sentence would have been needed to alert readers to the fact that the funders of the research included autism advocacy groups.
The story does not mention any of the other therapies for treating children with ASD, which include behavioral modification therapies and medications, or the pros and cons or costs of these different therapies.
Although there is no mention of where and when the potential therapy might be available, the story did establish that more research would be needed before it should be used. Since the story didn’t give the impression that anyone should use this approach right now, we’ll rate this satisfactory.
The story doesn’t adequately establish what is new about this approach and the research being reported on. Is this first time this approach has been studied? Does it build on existing approaches? That’s what we look for in this criterion, and it was missing.
The story reaches out to three experts, so we are confident it’s not based solely on a news release.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
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