Myths & Facts: Autism

Affecting an estimated one in 36 children in the United States in 2023,¹ autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. While a genetic condition is the cause of ASD in some people, in others, the cause is unknown. It typically begins before 3 years of age, and it can last throughout the person’s life.²

The earliest description of a child now known to have autism was written in 1799;³ however, it wasn’t until 1943 and 1944 when the first “accepted” descriptions of autism were published by two men known as the “pioneers of autism research.” In 1943, Leo Kanner, MD, published a paper titled “Autistic Disturbances of Affective Contact” that dubbed the condition as “early infantile autism” and later became known as autism of Kanner’s syndrome. In 1944, Hans Asperger, MD, published a paper that presented case studies of four children he and his colleagues had seen in his clinic in Vienna, Austria. Although scholars debated how much the conditions described by Drs. Kanner and Asperger were different and the doctors themselves considered them different, the descriptions were eventually merged in 1981 in an influential paper titled “Asperger’s Syndrome: A Clinical Account” by British psychiatrist Lorna Wing, MD. Dr. Wing argued that Kanner’s autistic clients and those Asperger described “were part of a wider range of people — soon known as ‘the spectrum’ — who shared some mix of impairments in social interaction; deficits in comprehension and use of language; and the presence of ‘repetitive, stereotyped pursuits.’”⁴

Today, it is known that most children can be diagnosed with ASD as young as 2 years old, but it is often diagnosed after 4 years of age. It affects boys four times more often than girls. And, while it affects all ethnic and socioeconomic groups, minority groups tend to be diagnosed later and less often.⁵

Raising children with ASD and understanding how to deal with individuals with ASD is challenging for most. Unfortunately, this challenge is exacerbated by the misconceptions circulating about the condition, which is why dispelling the myths surrounding ASD can help to clear up stereotypes and misunderstandings, and serve as a form of emotional support for parents and caregivers.

Separating Myth from Fact

Myth: ASD is a disease.

Fact: ASD is not a disease, but rather a neurodevelopmental disorder that impairs a person’s ability to communicate and interact with others.⁶ Simply put, these individuals’ brains work differently from other people’s brains.⁷

Myth: ASD is a mental health disorder.

Fact: Again, ASD is a neurological disorder with abnormalities in brain structure and neurotransmitter levels. However, it’s not uncommon for people, particularly adults, to be misdiagnosed with a mental illness before receiving a diagnosis of ASD. Importantly, though, mental illness and developmental disabilities such as ASD are not the same things, although studies have shown that many people with ASD also have a mental illness. In fact, anxiety and depression, in particular, occur at a higher rate among people with autism than in the general population.⁸ In a study conducted in 2019 that evaluated the utility of the Mini International Neuropsychiatric Interview (MINI) in assessing co-occurring psychiatric disorders in children, adolescents and young adults with ASD, researchers found 91 percent of children/adolescents and 31 percent of young adults were diagnosed with one or more co-occurring diagnoses.⁹ When someone with autism also has a mental illness, it’s known as a dual diagnosis.

Myth: ASD affects all people the same.

Fact: Autism is a spectrum disorder, and individuals with ASD differ widely in their intellectual abilities. According to the Centers for Disease Control and Prevention, 31 percent of children with ASD have an intellectual disability (intelligence quotient [IQ] less than 70), 25 percent are in the borderline range (IQ of 71 to 85) and 44 percent have IQ scores in the average to above average range (IQ greater than 85).⁵

There are three levels of ASD described in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition.: level 1, level 2 and level 3. Individuals with diagnosed with either level 1, 2 or 3 depending on how severe their disorder is and how much support they need in daily life. The levels range from least to most severe, with ASD level 3 describing an individual who has the most severe level of ASD symptoms, and ASD level 1 describing someone with symptoms on the milder end of the spectrum (Figure). Importantly, though, while the ASD levels are useful for diagnosing autism severity and support needs, they don’t provide a full picture of the strengths and limitations of each level. And, the three levels are not entirely inclusive of the symptoms and needs of all people with ASD.¹⁰

Also, individuals with ASD can be hard to test, and IQ levels are often under- or overestimated unless testing is performed by an expert in intellectual and developmental disabilities and autism. In fact, tests designed to include language and interpersonal analyses can misrepresent the intelligence of people with ASD.³

Myth: Individuals with ASD have savant abilities.

Fact: Only approximately one in 10 persons with autistic disorder has some savant skills, known as savant syndrome, a rare condition in which persons with various developmental disorders have an amazing ability and talent. In the case of intellectual and/or developmental disabilities, as well as brain injuries, savant skills occur at a rate of less than one percent. Therefore, not all savants are autistic, and not all people with autism are savants.¹¹

Myth: Individuals with ASD are emotionally detached.

Fact: Studies show that people with ASD express emotion in different ways, they direct their emotions to others less frequently with eye contact and they sometimes get emotional about different things, but they do have emotion.

In fact, according to Kenneth Roberson, PhD, an adult autism psychologist in San Francisco, Calif., some people with ASD have difficulty perceiving emotions and responding to them, while others with ASD respond normally. But, trouble processing emotions is not universal among adults with ASD, says Dr. Roberson. Other psychological conditions result in trouble understanding and responding to emotions. What’s more, adults with ASD who find it hard to recognize emotional reactions and express them have a specific pattern of processing emotions. For example, they find it difficult to understand emotions expressed directly by other people, as opposed to emotional information that is nonsocial such as music or written words. In addition, they have a hard time grasping emotional information that is complex such as a state of vague, nonspecific frustration. Finally, when someone on the spectrum notices an emotional reaction, either from within themselves or from someone else, it’s likely he or she will respond inappropriately since the intuitive, ingrained strategies to process emotions that help neurotypical people react automatically and appropriately to emotional experiences are less developed and accurate in those with ASD.¹²

Recent studies conducted by the Olga Tennison Autism Research Centre have found a pattern suggesting that children with autism need a longer time to process and react to emotional facial expressions such as happy, angry, fear, etc., which is consistent with previous work. This means that in everyday social contexts, which are fast-paced and ever-changing, people with ASD can have difficulty because they can sometimes be emotionally “out of sync” or “out of time” with their social partners.

In general, the organization says, “emotions expressed by the human face, voice and body are more difficult for people with ASD to understand and react to than emotions expressed through nonhuman or nonbodily forms such as music or written words. However, it depends on who the person expressing the emotion is, that is, whether they are a stranger or someone familiar.” Another recent study conducted by the organization “found more typical emotional reactions in children with autism to emotions expressed by people they knew, compared to people they didn’t know.”¹³

Myth: All individuals with ASD are violent.

Fact: There have been news stories relating ASD to violence, but aggressive acts by these individuals are usually in response to sensory overload or emotional stress. In fact, it’s unusual for individuals with ASD to act violently out of malice or pose any danger to society.³ Indeed, a small body of literature has suggested that, rather than being more likely to engage in offending or violent behavior, individuals with ASD may actually have an increased risk of being the victim rather than the perpetrator of violence.¹⁴

However, it isn’t uncommon for individuals with ASD to exhibit aggression. Hitting, biting, scratching, hair-pulling or kicking another person is relatively common in children on the autism spectrum. In a study of children and teenagers with autism, the researchers found that 68 percent had been aggressive to a caregiver and 49 percent had been aggressive to someone else at some point. More than half of the youth studied were currently having mild to severe aggressive behavior. According to Micah Mazurek, PhD, an associate professor at the University of Virginia where she directs the Supporting Transformative Autism Research program, in the general population, young children often become less aggressive as they get older and learn better ways to express themselves. But this aggression persists in some individuals with ASD through the teen years into adulthood. One study found that 15 to 18 percent of adults who have autism and intellectual disability showed aggression, and another study of autistic adults found that five percent of women and 14 percent of men had aggressive behavior over time, said Dr. Mazurek.¹⁵

Myth: ASD is caused by vaccines.

Fact: In 1998, The Lancet published an article linking vaccines to autism that triggered a great deal of fear, but after an investigation, the article was later retracted by the publisher. In 2010, the General Medical Counsel declared that the paper was not only based on bad science, but was deliberate fraud and falsification by the head researcher, Andrew Wakefield, MD, whose medical license was then revoked. Investigators learned that a lawyer looking for a link between the vaccine and autism had paid Dr. Wakefield more than £435,000 (equal to more than a half-million dollars).

The paper’s findings led other doctors to conduct their own research into the link between the measles, mumps and rubella vaccine and autism. At least 12 follow-up studies were performed, and none found any evidence the vaccine caused autism.¹⁶

Myth: It is unknown what causes ASD.

Fact: Causes of ASD are not well-understood. However, research shows that genetics are involved in the vast majority of cases.⁵ For instance, scientists have found rare gene changes, or mutations, as well as small common genetic variations in people with autism, implying a genetic component. In fact, a growing area of research focuses on interaction of genetic and environmental factors.¹⁷

According to Spectrum, a leading source of news and expert opinion on autism research, the most widely accepted environmental risk factors occur during gestation or around the time of birth. Various pregnancy and birth complications are associated with an increased risk of autism. These include preterm birth, low birth weight and maternal diabetes or high blood pressure during pregnancy. However, scientists are unsure of the mechanisms underlying these associations.

The maternal immune system also appears to play a role in autism risk. Infections, serious illnesses such as a bad case of influenza and hospitalizations during pregnancy are all linked to an increased risk of autism in a child. Women with autoimmune diseases, in which the body attacks its own tissues, are also at an elevated risk of having an autistic child. And, animal studies suggest that certain immune molecules can alter gene expression and brain development in ways that may be relevant to autism.

Exposure to the drug valproate, which is used to treat bipolar disorder and epilepsy, in the womb is also known to increase the risk of autism, as well as a variety of birth defects.¹⁸

In addition, according to Autism Speaks, several other factors are known to cause ASD, including:⁵

• Children born to older parents are at a higher risk for having autism.
• Parents who have a child with ASD have a two to 18 percent chance of having a second child who is also affected.
• Studies have shown that among identical twins, if one child has autism, the other will be affected about 36 to 95 percent of the time. In non-identical twins, if one child has autism, then the other is affected about 31 percent of the time.

Myth: ASD can be diagnosed only in children.

Fact: Some individuals are not diagnosed with ASD until they are adolescents or adults. Unfortunately, diagnosing ASD can be difficult because there is no medical test such as a blood test to diagnose the disorder. Instead, doctors look at the child’s developmental history and behavior to make a diagnosis using a variety of tools (see Example of Diagnostic Tools to Diagnose ASD); however, no single tool by itself should serve as the basis for a diagnosis.

ASD can sometimes be detected at 18 months of age or younger. By age 2, a diagnosis by an experienced professional can be considered reliable. However, many do not receive a final diagnosis until they are adolescents or adults, and the delay means they might not get the early help they need.¹⁹

Myth: ASD can be treated with a special diet.

Fact: While there is no scientific proof that diet helps to treat individuals with ASD, some parents believe it does. For instance, some believe in the specific carbohydrate diet, a restrictive eating plan that forbids carbohydrates with more than one molecule structure, including all grains, sugar, some dairy products and even certain vegetables. The diet was originally developed to treat gastrointestinal conditions such as celiac disease and ulcerative colitis. But, according to an article published in U.S. News & World Report, no strong evidence supports any diet to treat autism. For example, it says, “early research and plenty of parents’ experiences have supported a gluten-free, casein-free diet — or one that eliminates all foods containing gluten (including wheat, barley and rye, among others) and casein (namely, milk and dairy products) — as helpful for autism symptoms, but recent, stronger research found no difference between children with autism on the plan and those on a placebo.”²⁰

The research the article is referring to is a study conducted to examine the safety and efficacy of the gluten-free/casein-free (GFCF) diet. In the study, researchers placed 14 children with autism, age 3 to 5 years, on the diet for four to six weeks and then conducted a double-blind, placebo-controlled challenge study for 12 weeks while continuing the diet, with a 12-week follow-up. Dietary challenges were delivered via weekly snacks that contained gluten, casein, gluten and casein, or placebo. With nutritional counseling, the diet was safe and well-tolerated. However, dietary challenges did not have statistically significant effects on measures of physiologic functioning, behavior problems or autism symptoms. The researchers do note that these findings must be interpreted with caution because of the small sample size; however, the study does not provide evidence to support general use of the GFCF diet.²¹

It is important to note, though, that many children with autism have digestive issues, so a particular diet might work for individual kids with autism, and specific food choices might help to manage autism symptoms, experts say. “Dietary intervention can be life-changing by helping to alleviate symptoms and physical pain that can contribute to behaviors often associated with autism,” says Wendy Fournier, president of the National Autism Association.²⁰

Some parents also have had their kids try certain medications such as chelation to remove mercury from their blood based on unsubstantiated reports that mercury can cause autism. However, these medications haven’t been proven safe and could have serious side effects, including kidney damage. Very high doses of vitamin A are also believed by some to be very beneficial, but that can cause vomiting, bone thinning and liver damage, among other complications.²²

Myth: ASD has become an epidemic.

Fact: Actually, it’s only awareness about ASD that has increased since the 1980s and early 1990s, which has resulted in more parents, pediatricians and educators learning to recognize the signs of autism. As a result, more individuals are being diagnosed, causing people to believe that the condition has become an epidemic.⁶

Myth: ASD can be cured.

Fact: Unfortunately, ASD is a life-long condition, and there is no cure, even with medication. However, individuals with ASD can live independent, productive lives. Early and intensive behavioral treatment can reduce the severity of symptoms and help individuals develop adaptive skills for daily living, emotion and behavior regulation, and social engagement.³ Types of treatments include:²³

• Behavior and communication therapies that address the range of social, language and behavioral difficulties associated with ASD
• Highly structured educational therapies that typically include a team of specialists and a variety of activities to improve social skills, communication and behavior
• Family therapies such as learning how to play and interact with children in ways that promote social interaction skills, manage problem behaviors and teach daily living skills and communication
• Speech therapy to improve communication skills
• Occupational therapy to teach activities of daily living
• Physical therapy to improve movement and balance

While there are no medications that can improve the core signs of ASD, some medications can improve symptoms. For example, certain medications may be prescribed for hyperactivity; antipsychotic drugs are sometimes prescribed to treat severe behavioral problems; and antidepressants may be prescribed for anxiety.²³

Dispelling the Myths Now

Over the years, legislation has been enacted to help families of children with ASD. In 2014, the Achieving a Better Life Experience (ABLE) Act was enacted to allow states to create tax-advantaged savings programs for eligible people with disabilities (designated beneficiaries). Funds from these 529A ABLE accounts can help designated beneficiaries pay for qualified disability expenses, and distributions are tax-free if used for qualified disability expenses.²⁴

In 2019, the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act reauthorized and expanded the provisions first introduced in the Combating Autism Act of 2006. The Autism CARES Act ensures support for research, services, prevalence tracking and other government activities, as well as increases the annual authorized federal spending on autism efforts to $369.7 million through 2024.²⁵ Also in 2019, all 50 states and Washington, D.C., enacted mandates requiring some level of insurance coverage for the treatment of ASD.²⁶

In 2022, both chambers of Congress passed the Autism Family Caregivers Act of 2022 that would give autism families the support and training needed to provide quality caregiving to their children. Specifically, the act would establish a five-year caregiver skills pilot program to award grants to nonprofits, community health centers or hospitals to provide skills training to family caregivers of children with autism. The grants will provide for 25 pilot programs in at least 15 states. However, as of this writing, the act has not yet been signed into law.²⁷

Along with legislation, greater public awareness about ASD can help not just individuals with autism, but also make lives easier for families and caregivers. With the rising rates of diagnoses of ASD in the United States, it is increasingly important for parents, pediatricians and educators to recognize the signs of the condition so individuals can be diagnosed early and receive the support they need.