When U.S. President Donald Trump urged pregnant women to avoid Tylenol because of an unproven belief it can cause autism, Julie Green was brought back to the mom-blaming claims she heard more than a decade ago when her son was diagnosed with the condition.
"It seemed like every couple months there was some new headline. And there was still a lot of like, 'Oh, did mom do this? Did mom do that?' A lot of things were tied to pregnancy. And every now and then you'd brace yourself and you'd think, 'Oh, what did I do?'" said Green, who learned her son had autism when he was three.
"You question absolutely everything," she said from her home in Kingston, Ont.
"It sounds like a very ludicrous example, but I had real meat cravings when I was pregnant. So I ate a lot of McDonald's and it's like, 'uh-oh, therefore did eating a lot of Big Macs cause autism?"
Experts say there is no single identifiable cause for autism spectrum disorder, but genetics play a large role. Long after her son, now almost 17, was diagnosed, Green learned at age 44 that she herself had ASD. Now she is a volunteer speaker for Autism Ontario.
Researchers are investigating other possible factors to see if they might interact with genetics to increase risk, but large well-designed studies have shown Tylenol is not one of them, said Dr. Evdokia Anagnostou, a pediatric neurologist and co-lead of the Autism Research Centre at Holland Bloorview Kids Rehabilitation Hospital in Toronto.
Anagnostou and other autism experts say the warning from Trump and U.S. Health and Human Services Secretary Robert F. Kennedy Jr. in September is a harmful throwback to a time when moms were wrongly blamed for their children's autism.
For decades, starting in the 1940s, psychiatrists subscribed to the "refrigerator mother" theory that children developed autism because their mothers were emotionally cold and didn't give them enough affection.
The understanding of autism was "plagued" by that theory until it was debunked decades ago, said Anagnostou, who said present-day claims about Tylenol is fostering fresh guilt among mothers and moms-to-be.
In the wake of Trump's comments, she said the centre received calls from anxious parents asking "are you sure I didn't harm my child in pregnancy, because I remember I had a cold? I remember I had an infection. I know I took Tylenol."
"We cannot be irresponsible and talk about exposures during pregnancy and blame moms for the generation of neurodevelopmental conditions when we know them to be highly genetic," Anagnostou said.
Dr. Karen Wou, a maternal fetal medicine specialist at McGill University Health Centre in Montreal, said women are "already avoiding everything possible while they're pregnant" and Tylenol is one of the few safe medications they can take.
"The science is very clear about this topic," said Wou. "It is safe when it is used for the indication that it's used for in the lowest dose in the lowest time possible."
In fact, not taking it when needed has potential consequences — including a heightened risk of autism.
"If you don't treat your fever, if you don't treat your pain, then you can have complications," Wou said.
"We're not talking about benign things. We're talking about preterm delivery and baby with anomalies and mom being anxious and depressed, which could obviously affect the pregnancy in the long run."
Wou said the misinformation about Tylenol is also "definitely not going to help" the mom guilt that happens before babies are even born.
"Moms are worried about everything," she said. "When they have a miscarriage, when there's a complication in the pregnancy, (when) there's an anomaly in the baby, the first thing they do is wonder if they did anything wrong."
Voula Athanasopoulos, whose autistic son is 28 and mostly non-verbal, said her mom guilt started with questioning whether she had done something wrong during pregnancy and morphed into questioning whether she's doing enough as a parent.
"You compare how your pregnancy was and did you sleep enough? Were you under a lot of stress? Did you take medication?" she said.
"I don't think I'll ever be able to get rid of that feeling," said Athanasopoulos, whose son lives with her in Mississauga, Ont.
"I'm always trying to see, is there something else that I can do where I can give him a better quality of life? And then I keep thinking I've tried everything and what else am I missing out on?" she said.
At the same time, both Athanasopoulos and Green said they don't want mom guilt to interfere with appreciating their children for who they are.
"The what-ifs and the self-blame and everything like that, it's got to stop because you need to move on and you need to live day by day," said Athanasopoulos.
"My son has made me a better person, a better mom, a better human being. I see the world differently. And I thank God for him every day."
Instead of trying to find a cause, time and money would be better spent ensuring autistic people and their families get the evidence-based supports they need, said Green, who described her son as smart, creative and funny.
"I would tell mothers: trust science and step away from blame and analyzing. You'll just get locked in these spirals of shame and it really just takes you away from accepting and loving the child you have."
Picture Courtesy: THE CANADIAN PRESS/Sean Kilpatrick
