Publications from Toronto to Texas and beyond are writing about a report by researchers at McMaster University in Canada and published in Pediatrics which, according to a press release in EurekAlert states:
Proposals recommending routine screening of all children for autism gets a thumbs down from researchers at McMaster University.
In a study in the online edition of the journal Pediatrics, the researchers say there is "not enough sound evidence to support the implementation of a routine population-based screening program for autism."
Not only are there no good screening tools or effective treatments but there is no evidence yet that routine screening does more good than harm, said Dr. Jan Willem Gorter, a researcher in McMaster's CanChild Centre for Childhood Disability Research and associate professor of pediatrics....
For the study, McMaster researchers conducted a literature search to assess the effectiveness of community screening programs for autism.
"None of the autism screening tests currently available has been shown to be able to fulfill the properties of accuracy, namely high sensitivity, high specificity, and high predictive value (proportion of patients with positive test results who are diagnosed correctly) in a population-wide screening program," researchers said.
Gorter [a lead researcher] said that unlike breast cancer screening, no autism screening programs have been studied in randomized controlled trials. "There is no solid evidence on which to base the recommendations of the American Academy of Pediatrics."
"None of the autism screening tests for the general population that we have today have proven accuracy," said Gorter. "That is, they aren't good enough to accurately detect children who have autism or to accurately detect those who don't."
Rather than a formal screening, the McMasters researchers call for " careful surveillance and assessment of all preschoolers who show signs of language, social and cognitive problems."
The article itself, entitled Early Autism Detection: Are We Ready for Routine Screening? is available on the Pediatrics site. In the article itself, the authors make two rather startling points. The first is that the existing climate surrounding autism is problemmatic ("Information about autism is pervasive in the media and readily available, which almost certainly contributes to considerable alarm among both parents and health professionals"). The second, intriguingly, is that existing treatments for autism are marginally effective at best ("early intensive behavioral intervention has, at best, produced modest results in selected subgroups of children; the findings are judged to be based on research of variable but almost always poor methodologic quality").
Ouch.
The article, then, is letting us know that both screenings and treatments may be pointless, but that autism is very real and can be quite devastating. The authors would like to wait for better and more effective screening and treatment techniques before making screening a pediatric requirement.
Presumably, the distinction between formal screenings and "careful surveillance and assessment" is simply that only those preschoolers who are already showing obvious signs of problems should, in the view of the McMasters researchers, be assessed. And from the point of view of doctors with extensive experience in and knowledge of language, social and cognitive problems, all this makes pretty good sense. After all, why start down the road of a possible autism diagnosis when there's a good chance that the "symptoms" apparent in a preschooler are actually mild delays which will disappear in six months? Not only would premature diagnosis create all kinds of angst for the parents and lead to unnecessary therapy for the child, but it would also cost a good deal of money, and have a confusing impact on public understanding of what autism is, how often it appears, and how it might be prevented or cured.
Unfortunately, unlike those people with extensive experience in diagnosing autism in its earliest stages, most of us have no clue whether a preschooler is showing signs of language, social or cognitive problems. Unless a child is very obviously disabled, the truth is that preschoolers develop at different ages and have different levels of ability. Plenty of two year olds throw tantrums, have poor speech and language skills, and may even lag behind their peers.
In my opinion, the McMasters conclusion begs the question "if pediatricians are not going to screen children for developmental delays, whose job is it to pick up on those subtle cues that something's not quite right?" Should it be the parents? The daycare providers? The preschool administrators?
While the findings are almost certainly accurate - autism is a mystery, screenings may or may not be accurate, treatments may or may not be effective - they leave us in a very dark place. Is there, then, no good reason to bother with early diagnosis and treatment at all? After all, as the paper concludes, "Many therapies are available, but none has curative outcome or even well-established efficacy to change the course of the condition. The financial burden of the treatment can be extremely high, and cost-effectiveness has not been demonstrated."
More About Early Autism Diagnosis:
- Is Early Intervention Important for Children with Autism?
- Early Intervention for Autism
- What Are the Early Signs of Autism?
I think the interesting thing about this is the false positives a quarter of the time, and I think for many of the reasons sited one should be cautious making such a diagnosis which is actually only based on observation of behaviors. Although we’ve heard for years early detection often leads to better results, I have yet to see an accurate study showing a delay in intervention greatly prohibits the child’s chances of progressing.
I think for just those false positives alone is reason to reconsider. This means potentially a quarter of the autism rates are false, parents spend money they didn’t need to and one wonders, do they then consider the child recovered from autism or a misdiagnosis? Makes you wonder about the info out there, including intervention choices.
There are at least four good research papers I can think of that determine the benefit to intensive early intervention. There is one in the works that demonstrates that if you can catch it early enough (UCSD and ACE) you can avert many of the symptoms. Literally change the brain. My son is a part of this MRI study. I’m not sure where you are getting this opinion from?
Can you then accurate tell me why some interventions work for some but not all? All children progress at different rates and last I read, no intervention can predict which children will progress sooner or later than others. And there’s also the issue of any study, since there is no medical test to determine autism, could that ‘you can avert many of the symptoms’ just be the result of a misdiagnosis just to gain popularity for that intervention? I do think there is a certain margin of promotion for profit with too early of intervention.
Bottom line in my own experience for my son (and a few more I personally know) who is delayed overall by 2 years, just due to being delayed would prohibit progress of any intervention. I now have no doubt had I started interventions sooner, it wouldn’t had made a difference. I couldn’t force that progression.
There is another side to consider… it doesn’t catch it all anyway. We live in San Diego and and had a participating pediatrician in the study. My son had a regressive case of autism so the 12 and 18 month vists checked out just fine. I called the doc at 20 months because of a loss of words and they told me to wait until 24 months because he was so physically active; they told me that sometimes development milestones move like that. I know better now. Even at the 24 month visit it was my insistence that we be referred to the regional center that moved things along. When I called back to tell them what the RC had diagnosed, they were surprised. The checklist and screening failed to catch my son.
My kids have both been misdiagnosed now by early autism screenings. We’ve recently found out they actually have a genetic condition associated with developmental delays and for which the optimal interventions aren’t exactly the same as those offered for autism. I think the extreme push for autism screenings has led to a situation where all developmental differences in children are automatically labeled to be autism until incontrovertibly proven otherwise. If we’re going to do early screenings, I’d like to see the screenings become more specific and not simply lump all kids into the “autism spectrum” when something is different.
I think it should be the parents responsibility to bring up issues with their doctor as they arise. The task then would be to make it comfortable for parents to do so and for doctors to respond to those parental concerns appropriately, which is something many parents feel their child’s doctors don’t do now.