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For starters, autism spectrum disorder isn’t a disease
An autism spectrum disorder (ASD) diagnosis can trigger tough questions and difficult emotions. There’s so much to learn, it can be hard to know where to start.
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That feeling of overwhelm is increasingly common because autism prevalence has been rising steadily over the past 20 years — and along with it, public awareness of the condition.
Unfortunately, misinformation is spreading just as quickly. Whether you’re autistic, parenting an autistic child or both, separating fact from fiction can make a world of difference in your experience. We asked developmental pediatrician Carrie Cuffman, MD, to set the record straight and debunk eight of the most common myths and misconceptions about ASD.
Let’s start with the most basic misconception, that ASD is a disease.
“Autism isn’t an illness at all,” Dr. Cuffman clarifies. “It's just the way your brain works.” ASD is a neurodevelopmental disorder, which means something about brain development and function is different from that of a “typical” child. But different doesn’t mean wrong. And autistic people aren’t all different in the same ways.
“Those of us who work with autistic children have a saying: When you meet with one kid with autism, you’ve met one kid with autism,” Dr. Cuffman quips. There are some key criteria a person has to meet to receive an ASD diagnosis, but beyond that, the condition truly is — as the name suggests — a spectrum.
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In a similar vein, it’s important to clarify that ASD isn’t a mental illness.
It’s an understandable confusion. Healthcare professionals use the same diagnostic reference — the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) — to diagnose both neurodevelopmental disorders and mental health conditions. But if you were to skim through the book, you’d notice that it’s broken down into multiple categories.
There are other key differences between ASD and mental illness, too. Most mental illnesses develop later in life — schizophrenia and alcohol use disorder are prime examples. ASD, on the other hand, is a condition you’re born with.
Research does suggest that people with ASD have a higher risk of developing psychiatric disorders, so it’s important that parents watch for changes in mood and behavior, just as they would any other child.
Dr. Cuffman points out another important distinction between ASD and mental illness: “Mental illnesses have really clear medical treatments available. But there’s no medicine that can treat autism.” More on that in a bit.
Autism is becoming more common as a diagnosis. But that’s primarily because of four big changes:
Research shows that there’s probably been a small increase in the number of children with ASD, but it still doesn’t meet the definition of an epidemic.
The most recent data from the U.S. Centers for Disease Control and Prevention (CDC) shows that autism isn’t a sex-specific condition, though boys are more likely to have ASD than girls. Their research suggests that about 4% of boys have ASD, while the number of autistic girls is lower, at 1%.
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The CDC looks exclusively at biological sex in their research on this topic, so we can’t know for sure how ASD diagnoses break down by gender identity. That’s a shame because many experts think that gender norms contribute to girls and children assigned female at birth (AFAB) being misdiagnosed. As we get better at identifying ASD in girls, they predict those differences in diagnoses will even out.
Like everybody else on this planet, autistic people are unique. Their brains don’t all work the same way, and their symptoms can vary wildly. So, it’s wrong to assume that all autistic people have the same characteristics or impairments. Common generalizations about autistic people are that they:
These statements may be true for certain autistic individuals, but they definitely aren’t true across the board. Stereotypes like these fuel discrimination and deepen to the inequities people with disabilities experience every day.
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This is a myth you’ve probably heard before. A researcher named Andrew Wakefield claimed that the MMR vaccine caused autism. His findings appeared in a 1998 issue of The Lancet, a prestigious medical journal. From there, the story spread.
Meanwhile, despite researchers’ efforts, nobody ever managed to replicate Wakefield’s findings —because, as it turns out, he falsified the data. Investigators discovered that he had a financial conflict of interest he didn’t disclose. He was also ideologically opposed to vaccination.
“He put false information about the patients he studied in his paper in order to make his case against the MMR vaccine,” Dr. Cuffman explains.
In 2010, a panel charged Wakefield with dishonesty in his research. The article was retracted, and he lost his medical license, as there is no scientific support for the idea that vaccines cause autism. But the damage was already done. Many people still believe, despite extensive research to the contrary, that vaccines cause autism. It’s one of many reasons vaccine hesitancy is on the rise.
In order to understand why some people attribute ASD to bad parenting, we have to go way back in time to the 1940s, when the concept of autism first emerged. Austrian psychiatrist Leo Kanner was the very first person to describe autism.
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“Kanner theorized that autism was caused by something called refrigerator mother syndrome,” Dr. Cuffman explains. At this point in the study of psychology, researchers — inspired by Sigmund Freud — thought that childhood trauma was the root of most mental issues. In the case of autism, well, the phrase “refrigerator mother” kind of says it all.
The theory, Dr. Cuffman explains, was that mothers who were cold, distant and unavailable traumatized their children to such an extent that they “became” autistic. For decades, that theory dominated the study of autism. But Dr. Cuffman is clear: For all the harm it did, there was never any evidence behind the refrigerator mother theory.
“Researchers have looked at this carefully,” Dr. Cuffman continues. “It’s been proven completely false. Parenting styles do not cause or contribute to autism in any way.” Unfortunately, this myth has a long tail, and to this day, it’s still used to blame and shame parents.
As tough as it may be to hear, autism is a lifelong disorder. It isn’t a disease, and it can’t be cured. But don’t let the fact that there’s no cure for ASD keep you from having your child evaluated.
“There’s no cure, but we definitely have treatments,” Dr. Cuffman shares. “Currently, the evidence-based treatments are all therapies and educational intervention. There are no medications, diet changes, vitamin supplements or anything like that.” Autistic children who have food allergies or digestive issues do benefit from special diets, just like neurotypical children do. But be sure to talk with your doctor before trying a new diet.
Instead of trying to “cure” autism, providers focus on helping children make independent developmental progress. And they can make progress. The earlier a child is diagnosed with the condition, the earlier they’re able to receive interventions and support. They might not “get better,” so to speak, but their behaviors will change over time as they develop and respond to specialized care.
“The amount of progress a child makes is variable, depending on how severe the symptoms are,” Dr. Cuffman adds, “but many autistic kids end up very similar to peers, and many adults with autism hold jobs, get married, have children, all of that. In fact, most of us probably know a few adults with autism spectrum disorder without even realizing it.”
We’ve come a long way in our understanding of autism. But we still have a long way to go, and misinformation dies hard — especially in the age of social media.
But there’s good news: You don’t have to learn alone.
“If you have a child with autism, seeking out trusted sources of information is incredibly important,” Dr. Cuffman advises. “Talk to your pediatrician, or your developmental pediatrician, if you have one. They can point you toward the resources you need to make sure that you’re taking the best care of your kids possible.”
And if you’re concerned that your child might be on the spectrum? Dr. Cuffman urges you to speak to their pediatrician.
“We know that our therapies and treatments work best when we start early. So, it's really important to raise concerns quickly and get the evaluation done. That way we can answer your questions and get your child appropriate resources and therapies if they need them.”
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