This story, though, did a particularly poor job in large part because it allowed the lead author of the study to promote the idea that this might lead to a scan to be used on all children. The story did this despite the fact that it did very little to evaluate the quality of the evidence behind the study, presented no quantification of the potential harms associated with screening and tossed aside the issue of cost by claiming that scans — even for every kid in the country — would be “relatively inexpensive”.
Autism spectrum disorders are increasingly being diagnosed, yet the causes remain elusive and the treatments are far from a cure for most kids. Parents are hungry for solutions. Early detection for autism spectrum disorders is felt to be important because early interventions are one of the few treatments that are effective. Moving the window for detection from age 3 or older, when many of the behaviors develop, to the infant stage could provide additional time for early intervention strategies. The fact that the story does not talk about what these might be for infants is one of many missing elements that made this story a missed opportunity.
By saying that EEGs are “relatively inexpensive, painless and safe” the story skirts the entire issue of screening costs both at the individual level and at the population level. Even basic genetic screenings for couples considering having children are not covered by many insurance plans unless the couple is in a very high risk group for a particular disorder. The assumption that people might be able to just stop into a clinic and have their child scanned for very little money is naive and misleading.
The story provides a lot of percentages but very little in terms of absolute differences or clear, hard numbers. It says that “Prior research has shown that about 20 percent of siblings of children with autism will also develop autism and another 40 to 50 percent will have some characteristics of the disorder, such as repetitive behaviors or problems with social interaction, language or communication, but not the full-blown disorder.” That’s a great piece of context and should have guided the rest of the reporting. Instead, the story says that “When the babies were nine months old, researchers could predict who was in the high-risk autism group — that is, they had a sibling with autism — with nearly 80 percent accuracy.” It goes on to say, “When broken out by gender, researchers found other differences. For example, at nine months they were able to predict which boys were in the high-risk group with near 100 percent accuracy. But accuracy for girls at that age was only 60 percent, not statistically significant.” Are readers to take this to mean that the statistically significant predictions for boys were averaged with the statistically insignificant predictions for girls to arrive at the “nearly 80 percent” figure? If so, this seems problematic. Regardless, readers deserved absolute numbers.
No harms were quantified. Instead, readers were told that the EEG is “painless and safe.” The story presses the idea that “early intervention is extremely important” even though the study did not detect autism in any way that would warrant treatment. What would be the next step for these children? Should they be put into behavioral therapy, put on a restrictive diet, given drugs of some kind? All of these options have potential consequences that could, indeed, prove harmful to the children, especially if they are falsely diagnosed as having autism. And, like most screening tests, there is the additional potential harm of unnecessary worry for some parents, as it is likely that at least some kids will ‘screen positive’ and then develop normally.
Screening tests have harms. It is a common journalistic pitfall to overlook this fact.
Nowhere does the story address the idea that the main benefit of this test appears to be that it detected with 80% accuracy during a very small timeframe that a child had an older sibling with autism. This means that the study correctly identified most of the time a risk factor that was already known to the parents of the chlid and to the researchers. So, in effect, the study had no actual benefit for the kids or the parents. As the only independent source in the story noted, “Also, the study predicted who was at high risk of autism, but it’s unknown if those babies actually went on to develop autism”. This seems like a giant hole that should have been explored – not tossed away at the end of the story.
The story takes a fairly straightforward approach at first, but it gradual builds up a head of steam before blowing its top when lead author Dr. William Bosl says, “My hope is we would have a simple way of measuring brain activity in every child and see the patterns emerging that might track autism characteristics. … That would be tremendously useful. We know early intervention is extremely important. Right now, for a lot of children, that means 3 years old. What we don’t know yet is if you can intervene at 9 or 12 months and how effective that could be.” Every single child should be hooked up to an EEG? Based on a study that looked at 79 kids, only 46 of whom were in the high risk pool? This seems like an overstatement that should have been challenged in the story. Unchallenged, it contributes to an atmosphere of fear and paranoia around autism spectrum disorders, very real and serious conditions that have led to some very unfortunate hysteria in some quarters.
The story spent the most time quoting the lead author, William Bosl from Children’s Hospital Boston. It also quoted Dr. Joshua Ewen, a neurologist and director of the clinical neurophysiology laboratory at the Kennedy Krieger Institute in Baltimore. We wish the story had made better use of Ewen and allowed him to help readers make sense of the study. His comments come too late to dampen the boosterism of Bosl hoping for every child to be hooked up to an EEG at nine months of age. Nonetheless, in citing an independent source, the story barely meets the criterion.
When reading this story, one starts to think that doctors have no idea how to diagnose autism, and yet autism diagnoses clearly are on the rise. (Prevalence being on the rise is a matter of debate.) How this diagnostic approach compares to existing methods or emerging methods, such as the MRI scan described in the December study, remain a mystery. Even a brief mention of MRI or behaviors that parents and pediatricians might observe and refer for additional testing would have been helpful.
The story does a good job setting up the study by explaining that researchers already know that having a sibling with autism can be a risk factor for developing autism and goes on to explain that this method of reading an electroencephalogram (EEG) is experimental. The story accurately states that EEGs are not new, but have been used for detecting seizures for many years.
The story accurately states that EEG is an old test, and that the novel piece is applying new technology to interpret patterns. We do wish that the story had mentioned some of the similar research that has been published in recent months. The study comes on the heels of a very similar study released in December that claimed that a 10-minute MRI scan could find six physical differences in the brain that could correctly identify autism. Doesn’t that seem like an even better, more definitive screening system, assuming that brain scans or EEGs are the route to take?
No evidence that the story relied on a news release.