Seeking answers on autism: A CHOP expert debunks the top 5 myths | Expert Opinion
Families look for alternative treatments because many remedies don't work for all children, or can require intensive effort. But there are a lot of falsehoods being peddled.
Several parents asked for my opinion when the Food and Drug Administration recently announced a warning label on acetaminophen for its alleged link to autism, and when the agency supported the use of leucovorin as an autism treatment despite a lack of scientific evidence. And I am sure I will get questions about the Centers for Disease Control and Prevention’s new claim on its website that the link between vaccines and autism cannot be “ruled out.”
As a developmental and behavioral pediatrician who cares for many children on the autism spectrum, I love to talk with families about what they’re hearing.
Families with children on the spectrum can feel whiplashed by online “influencers” hawking different theories, products, and alternative treatments. These families want to do everything they can to support their children, and so they seek out information everywhere they can find it.
Families look for alternatives because many of our current treatments are not effective for all children, and even those that work well can require intensive effort from teachers, therapists, and caregivers. As a clinician, I try to share the available evidence with families so they can make informed decisions.
Hype for particular treatments and theories about autism’s rise are not new. But when the highest officials in government shout about autism from the rooftops and the internet is awash in “information” untethered from scientific proof, it is more important than ever for clinicians and public health officials to approach parents with compassion, honesty, and evidence.
At Children’s Hospital of Philadelphia (CHOP), Pediatric Health Chat is tracking medical myths and rumors, including those about autism. Based on that data and conversations with parents, here are the top five things I wish my families knew:
1. Autism is not an epidemic
While it is true the number of children with autism spectrum disorder continues to rise across all sociodemographic groups, there is no evidence a single environmental toxin or other factor is the cause. In fact, the strongest studies show that most of the rise in autism over the past 20 years is due to increased recognition of the condition that has meant earlier, incorrect diagnoses can be set aside; and the fact that more characteristics and behaviors are known to be signs of autism. So, while autism diagnoses are rising, there is no evidence of an epidemic — autism is growing, but it’s not a sudden outbreak like COVID .
2. Vaccines do not cause autism
The myth that vaccines cause autism originated in a British study back in the 1990s on just 12 children that was so fraudulent, the journal that published it wound up retracting it. Some people continue to insist that because autism has continued to increase — and new vaccines have been developed — there must be some kind of a link. But just because two things occur at the same time does not mean that one causes the other. (A classic example is that both ice cream purchases and drownings increase in the summer, but no one is claiming that ice cream causes drowning!)
As CHOP’s Vaccine Education Center lays out, there have been numerous, well done studies that have not found a link between vaccines and autism. Vaccines save lives, and the evidence in favor of vaccine safety with respect to autism is overwhelming. I encourage all of my patients’ families to vaccinate their children. I am proud to say that I vaccinate my own children following recommended schedules — to protect them from preventable infections.
3. Acetaminophen does not cause autism
While a few small studies have found an association between prenatal acetaminophen use and autism, the largest and strongest studies have found no association. Studies that do not include factors like why the pregnant person is taking acetaminophen or whether siblings are on the autism spectrum may inaccurately conclude that acetaminophen is a cause when it is not. The truth is that high fevers during pregnancy are known to be dangerous, and acetaminophen, the active ingredient in Tylenol, is the safest medication we have for treating fever. I would have no hesitation recommending acetaminophen during pregnancy as needed.
4. Leucovorin is not a proven treatment for autism
Last spring, a news story appeared about a child who became more verbal after taking leucovorin (also known as folinic acid, a medication that is used for cancer patients undergoing chemotherapy). Since that time, requests from families in the autism community to begin leucovorin have skyrocketed. Yet the evidence for leucovorin’s effectiveness is incredibly limited. For example, children in placebo groups — those that didn’t get any leucovorin — showed similar gains as those that got it. Some families dropped out of the trials because their children became more aggressive while receiving leucovorin. We need larger, well designed, randomized control trials before I would feel comfortable recommending leucovorin to my patients.
5. So-called facilitated communication does not help children with autism
Several decades ago, facilitated communication (in which a facilitator touches a patient to “help them spell” on a keyboard or letter board) was thoroughly debunked by studies proving the facilitator was guiding responses, not helping the person to truly communicate their own thoughts.
Yet facilitated communication (FC) has made a comeback in the form of other “therapies” like supported typing and through the “Telepathy Tapes” podcast. However, these are just FC by another name and are also unsupported by evidence.
On the other hand, augmentative or alternative communication, through which individuals themselves use alternative strategies or “talker” devices to express themselves (instead of having a facilitator physically help them), is strongly supported by evidence. While I understand why families want to give their children every opportunity to express themselves, I strongly urge them to go with the methods that are proven to help them achieve their goals.
Most troubling to me is that woven through all these myths and misinformation is the implicit belief that individuals with autism lack value, or that they cannot lead happy, successful lives. While some individuals on the autism spectrum struggle to live independently and may have some challenging behaviors, all these people are worthy of dignity and respect. Continuing to find ways to best support people with autism and their families, to allow them to reach their highest potential, needs to be the focus.
Editor’s note: Pediatric Health Chat is an online initiative at Children’s Hospital of Philadelphia taking aim at the latest myths and misconceptions about children’s health. Kate E. Wallis, MD, MPH, is a developmental behavioral pediatrician with the Division of Developmental and Behavioral Pediatrics at Children’s Hospital of Philadelphia.