The following originally appeared on The Upshot (copyright 2015, The New York Times Company).
Few would dispute that children who are exhibiting signs or symptoms of autistic spectrum disorder should be referred and tested. It is when we talk about screening every child for autism that the debate becomes heated.
Recently, the United States Preventive Services Task Force released its draft recommendation statement on the screening of young children for autism spectrum disorder. The task force decided that the current evidence was not enough to recommend widespread screening of children with no symptoms. This led many people to worry that the group was telling physicians not to screen.
The American Academy of Pediatrics disagrees with the task force. For years, the academy has argued that all children should be screened at 18 and 24 months of age. Pediatricians tend to believe that identifying this problem early and getting children help leads to the most benefit. Moreover, they believe that without universal screening, autism may be missed and treatment delayed for some children, leading to worse outcomes.
We lack the specific studies to prove the case, so what are we to do?
Whenever anyone is discussing a screening test, I usually have four questions, which I’ve adapted from David Sackett’s classic handbook on evidence-based medicine: (1) Is the condition prevalent and severe enough to warrant screening? (2) Do we have a cost-effective means to screen the general population? (3) Does early diagnosis make a difference (that is, do we have treatments available that are more successful when patients are diagnosed earlier?) And (4) Will an early diagnosis motivate people to use information gained from screening?
Autism affects one in 68 children in the United States, according to the Centers for Disease Control. While I am on record as being somewhat skeptical of the actual numbers in recent years, few are arguing that autism is not prevalent and that it doesn’t have a significant impact on the lives of children and adults. So Question 1 is a resounding yes.
Autism screening can be done with a tool like the Modified Checklist for Autism in Toddlers (M-CHAT), which is a simple 23-question survey that parents fill out and that doctors score. It’s free for all primary care physicians to use. There are specific billing codes for which primary care physicians can seek reimbursement for administering the test. So Question 2 is satisfied.
I’m not aware of studies on how parents of affected children comply with recommended therapy, but as a pediatrician my (admittedly) anecdotal experience has been that the parents of children with autism spectrum disorder are some of the most engaged and strongest advocates for their children. I know of no one who thinks that Question 4 would be answered negatively for a significant number of people.
That leaves Question 3, which asks whether early intervention works for children with autism. There’s not much disagreement there, either. In its discussion of the effectiveness of early detection and treatment, the task force noted that 26 “good” and “fair” randomized controlled trials studied early intensive behavioral and developmental interventions. Three of four trials found that interventions improved cognitive scores, like the I.Q., 11 to 16 points. They also showed improvement in language skills. Twelve trials examining play- or interaction-based interventions showed significant improvements in measures of interactions with others.
The task force’s quibble is that these interventions were performed in children already found to have autism spectrum disorder. They weren’t conducted in children whose positive screen led to diagnosis but who hadn’t yet been symptomatic enough to concern their parents or physicians without screening.
In a perfect world, asking for a study specifically involving those children might be a reasonable request. In the real world, such a study is almost certainly not going to happen. At least, not anytime soon.
The interventions for autism are rarely pharmaceutical or device-related. As noted above, they are almost always behavioral or developmental. As such, they are not going to be funded by the health industry. They will almost certainly require government funding.
In 2014, the National Institutes of Health spent $188 million on autism research. This was a fraction of the more than $30 billion spent by the N.I.H. that year. The N.I.H. doesn’t even have a “Fact Sheet” describing its research programs specifically directed toward autism. I searched the N.I.H. RePORT site for any grants given for autism from the Agency for Healthcare Research and Quality in the last five years and found two; I’m a co-investigator on the first.
Further, if you drill down into the autism spending, a lot of it (if not most of it) is directed toward basic science research. It’s looking at what might cause autism, how we could better predict who might develop autism, and what the mechanisms are in the brain that lead to autism. All of that is important work. But very little of the funding is directed toward studying how behavioral and developmental interventions affect children, let alone focusing specifically on those who “screen positive.” No study is coming soon.
The cost of caring for and supporting a person with autism spectrum disorder without an intellectual disability over a lifetime in the United States is $1.4 million. Adding an intellectual disability raises the price to $2.4 million. These are costs above and beyond that of raising a child in general, including special education in childhood and medical care, residential accommodation and productivity losses in adulthood. This means that autism costs the American economy about $175 billion a year.That’s more than the cost of cancer, strokes and heart disease combined.
The task force is trying to demand a high level of evidence before recommending a screening test be performed universally. But without the stamp of approval from the group, payment for screening is not mandated by the Affordable Care Act.** And no studies satisfying the requirements of the task force are likely to be done soon. This means that less screening will be done, even though we know three things: Autism is prevalent, screening works, and early intervention seems to make a difference in those found to have the condition.
**I should note that I should have been more specific and said that the stamp of approval comes from groups like the USPSTF. But other groups count, too. As long as screening is recommended by Bright Futures (which is run by the AAP), screening coverage will stay in place. I meant to stress that these recommendations can have an impact, as I’ve discussed before.