Many parents of kids with autism, desperate to help their children, search for answers about their child’s condition online. But on the internet, they can stumble upon posts about unproven miracle treatments or find misguided information in discussion forums.
The truth is, even when you look at the research, there are many unanswered questions and conflicting findings, which can lead to misinterpretations and people filling in the blanks on their own.
But all of this misinformation is unhelpful to parents, and in some cases, it can be downright dangerous. Here, we’ve asked experts to break down some of the most common inaccuracies that are perpetuated online.
Autism is a “spectrum” disorder, meaning the symptoms, abilities, disabilities and severity levels vary from person to person. Characteristics of autism spectrum disorder (ASD) can include delayed or no speech, extreme sensitivity to sound or touch, repetitive behaviours, poor social skills, gut problems and seizures, among others.
But these potential symptoms aren’t present in every child who has autism, and it’s important to recognize a child’s unique symptoms so they can be treated accordingly. This is also important, says Suzanne Lewis, a paediatrician and medical geneticist at the University of British Columbia and chair of the professional advisory committee of Autism Canada, because, “We could diagnose and treat sooner rather than [we] wait for all the checklist symptoms to occur. Some of them may never occur. And the earlier you begin therapy, the better the outcomes. Language, IQ and adaptive skills all improve.”
A study from the Autism and Developmental Disabilities Monitoring (ADDM) Network found that 69 percent of children with autism did not have an intellectual disability, which is typically defined as an IQ score of 70 or below.
Still, there’s a public misconception that everyone with autism has limited intellect. “People may base their assumption, for instance, on how well someone speaks or communicates,” says Jessica Brian, a psychologist at Holland Bloorview Kids Rehabilitation Hospital in Toronto. “But kids with autism can be very smart in some areas and have challenges in other areas, just like any child, though their strengths and weaknesses tend to vary more. For example, a child with autism may have limited verbal skills, but be very good at solving complex puzzles,” says Brian. She emphasizes, “Intelligence is not just based on a single ability.”
Kids with autism often struggle with communication and social skills, making it hard for them to express what they want or to know how to play. But, like most children, many kids with autism want friends.
“Some very young children in particular may seem to show less interest, but it’s likely that they haven’t developed the skills to make friends and play together,” says Isabel Smith, a professor and the Joan and Jack Craig Chair in Autism Research in the department of paediatrics in Dalhousie University and IWK Health Centre in Halifax. “It just may take them longer to do this, and they will need to be taught skills.”
They may learn these skills in supervised playgroups with a little more coaching than typical kids their age. As kids with autism mature, they may socialize with little or no coaching, but in ways that are different than their typical peers.
“Older kids may be eager to talk about topics that interest them but be less entertained to talk about other things. People may interpret this as they are antisocial, which is often not the case at all,” says Bryna Siegel, a research psychologist and executive director of the Autism Center of Northern California. Kids may eventually withdraw if they haven’t been able to make or keep friends, but it’s important to know that if they are understood and develop good social skills, young people along the spectrum can go on to have deep, joyful relationships.
There is strong evidence that certain genes cause or contribute to autism, but environmental factors also come into play. Researchers are just beginning to understand this.
An autism diagnosis is more likely to be shared by identical twins than fraternal twins. Studies once reported that if one identical twin had autism, there was a 90 percent chance that the other twin did too, explains Lewis. “But research now suggests that number is 50 to 70 percent. The fact that the other 30 to 50 percent of identical twins do not show autism suggests environmental factors may play a role.” Occasionally, factors like exposure to medications such as valproic acid (an anti-seizure medication) or in utero exposure to a viral infection such as rubella could lead to autism.
In 1998, The Lancet published a report linking vaccines to autism, which triggered a lot of media play—and a lot of fear. But the article was retracted when it was confirmed that some of the data was falsified. The physician lost his medical license.
Some people continue to worry, especially about preservatives in vaccines, but autism rates increased for years after preservatives were removed from them. The misconception may linger partially because vaccines are administered around the time that potential signs of autism typically become visible to parents and doctors. But this is merely a coincidence. Scientific studies have consistently found no correlation between vaccines and autism.
Some parents have had their kids try chelation, which involves taking certain medications to remove mercury from the blood. These treatments are based on unsubstantiated reports that mercury can cause autism, but they haven’t been proven safe and could have serious side effects, including kidney damage, according to the Mayo Clinic.
But that’s not the only alternative treatment that could prove harmful. Some practitioners claim vitamin A in very high doses may reduce autism symptoms, but it can cause vomiting, bone thinning and liver damage among other complications.
In truth, there are no proven ways to “cure” autism, but you can talk to your child’s doctor about medications or therapies to treat specific symptoms, or about getting a referral to a specialist. Families curious to see if a treatment will improve their child’s symptoms should be sure the information about the therapy is from reliable independent sources, not the developer of the therapy or its testimonials, suggests Smith.
“Maintain healthy skepticism about big claims,” she cautions. “And ask if the therapy has been properly studied in children with autism spectrum disorder who share your child’s difficulties, to ensure that risks are minimal.”
This article was originally published online in November 2018.