Myths and Facts: Autism

In 2014, there were almost four million births in the U.S.¹ Today, one in every 68 of these births is identified as having autism spectrum disorder (ASD)2 (an increase from one in 110 in 2009 and one in 150 a decade ago). This equates to a staggering 159 children born with the disorder each day. It occurs in all racial, ethnic and socioeconomic groups and in boys five times more often than girls.³ At a cost of $60,000 a year on average per family, there is no medical detection or cure for it.²

In fact, autism is the fastest-growing developmental disorder in the U.S., affecting an estimated 1.5 million children and adults.⁴ Yet, despite its growing prevalence, it is not a new disorder. Scientist Leo Kranner first described autism in 1943, but the earliest description of a child now known to have had autism was written in 1799.⁵ Why more children are being born with autism has created fear among many parents. And this fear has resulted in fallacies that are harmful for both autistic children and their families.

Separating Myth from Fact

MYTH: More kids have autism today than ever before.

FACT: While it’s true that there has been a significant surge in diagnoses of autism (increasing nearly 1,800 percent from 1992 to 2008), experts question whether there is actually a higher incidence of the disorder or if there is just increased public awareness of autism symptoms, more media attention and better diagnostic tools.⁶ “It could be that we’re just finding it more often,” said Dr. Jeffrey Skowron, regional clinical director for Autism Intervention Specialists in Worcester, Mass. “Families are looking for the signs more, and they have better access to pediatricians, clinicians and psychologists who are better able to diagnose them.” What should really be said, he adds, is that more people are diagnosed with autism today than ever before.⁷

The increase in autism prevalence is also attributed by some experts to the redefinition of autism, which includes a wider range of disorders on the spectrum.6 That redefinition occurred in May 2013, when the National Institutes of Health published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which is widely used to diagnose mental health conditions in North America. In this edition, all autism disorders were merged into one umbrella diagnosis of ASD.⁸

A decade ago, autism was thought of as a single rare and distinct condition made familiar by Dustin Hoffman’s portrayal of an autistic adult in Rain Man. “Hoffman did a beautiful job of looking autistic, and he did everything we associate with this disorder,” said Catherine Lord, PhD, a nationally recognized expert on autism from the University of Michigan. “But he showed us about 10 out of the 12 or so behaviors associated with autism, including echolalia, idiosyncratic speech, verbal and behavioral rituals, preoccupations, unusual sensory responses, as well as difficulties with eye contact, facial expressions and gestures that are common to almost all individuals with autistic spectrum disorder. Most children and adults do not have all, or even most, of these behaviors.”

As clinicians and researchers came to realize that autism is part of a spectrum of disorders, the diagnostic framework was fundamentally changed, as was treatment and prognosis. “Children were previously diagnosed as autistic only at the extreme of these behaviors, and usually when they were already over 6 years of age, when fewer successful treatments are available,” said Janice Ware, PhD, associate director of the Developmental Medicine Center at Boston Children’s Hospital. “Therefore, many professionals hesitated to diagnose a child as autistic.”⁴

A study conducted in Denmark appears to confirm the increase in autism is due to redefinition. In the study, researchers found that most of the increase (60 percent) can be attributed to changes in diagnostic criteria and the inclusion of out-of-hospital diagnoses. In 1994, the diagnostic criteria used by clinicians to establish psychiatric diagnoses were changed. “This meant that autism was recognized as a range of disorders — which is why we today call it ASD — but it also meant changes in the specific symptoms that form the basis of an autism diagnosis,” said lead researcher Stefan Hansen from the section for biostatistics in the Department of Public Health at Aarhus University. Then, in 1995, the national health registries in Denmark also began including diagnoses made outside of hospitals; prior to that, only diagnoses made in hospitals were reported. In the study, the researchers collected data on almost 700,000 children born in Denmark from 1980 through 1991. The kids were followed from birth until autism was diagnosed, or until they died or emigrated, or until the end of 2011, whichever came first. Almost 4,000 children from that group were diagnosed with an ASD, most of whom were diagnosed after the diagnostic criteria and inclusion of outpatient diagnoses occurred. Of course, there is still 40 percent of the increase that is unexplained, acknowledged Hansen.⁹

MYTH: Autism is a disease.

FACT: Autism is not a disease; it is a collection of behaviors or symptoms, which makes it a syndrome. While the underlying pathology or physical issues related to it are not well understood, Dr. Skowron believes it is like a disorder of the brain.⁷ Studies of people with autism have revealed abnormalities in brain structure and neurotransmitter levels.5 In fact, autism appears to be caused during very early brain development; however, the most obvious signs and symptoms tend to emerge between 2 years and 3 years of age. The disorder can be associated with intellectual disability, difficulties in motor coordination and attention, and physical health issues such as sleep and gastrointestinal disturbances.⁸

MYTH: All autistic individuals are affected the same by the disorder.

FACT: As the name implies, ASD is vast, and the symptoms can manifest in a variety of ways. Indeed, every autistic individual is unique. Many have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities, and they take pride in their distinctive abilities and “atypical” ways of viewing the world. On the other side of the spectrum are individuals who have significant disability and are unable to live independently. About 25 percent of individuals are nonverbal but can learn to communicate using other means.⁸

MYTH: Autistics are violent.

FACT: It’s very unusual for individuals with autism to act violently out of malice or to pose any danger to others. However, if violent acts do arise, it is typically due to sensory overload or emotional distress.⁵ Mostly, autistic individuals act out or have what are known as meltdowns usually as expressions of frustration with themselves or situations, but their actions don’t equate to violence against other people.¹⁰

The connection between autism and violence stems from recent news stories, including the shooting at Sandy Hook Elementary School in Newtown, Conn., in 2012. It was claimed that Adam Lanza, the shooter, was diagnosed with autism or Asperger syndrome, causing many to believe that the diagnosis was the cause for his violent actions. But, according to a statement from the Autism Society, “There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence. To imply or suggest that some linkage exists is wrong and is harmful to more than 1.5 million law-abiding, nonviolent and wonderful individuals who live with autism each day.” Peter Bell, executive vice president for programs and services for Autism Speaks, and the father of a son with autism, maintains that, by definition, people with a diagnosis of autism or Asperger syndrome are not inclined to commit an act of violence; the likelihood of that happening would be no different than the rest of the population.¹¹

A 2008 study shows that violent acts — such as the one committed by Lanza — appear to be due to autism plus a psychiatric disorder. The study by scientists at King’s College London found that 70 percent of their young autistic subjects had at least one co-morbid disorder such as childhood anxiety disorder, depressive disorder, oppositional defiant and conduct disorder or ADHD. Forty-one percent had two or more co-morbid disorders. And, in a 2008 literature review of 17 papers describing Asperger syndrome, the researchers found that “an overwhelming number of violent cases had co-existing psychiatric disorders at the time of committing the offence”— 84 percent, to be precise. They also couldn’t rule out personality disorders such as anti-social personality disorder in the remaining subjects.¹²

MYTH: Individuals with autism aren’t able to have relationships with others.

FACT: While many autistic individuals have difficulty with social interaction, they can have close relationships, fall in love and have children. In addition, those with autism feel as much, if not more, empathy as others, although they may express it in ways that are harder to recognize.⁵ Many autistics are easily overwhelmed by emotions of those around them. It is often assumed that autistic people want to be isolated, but isolating them to protect them can be very harmful.¹⁰

MYTH: Individuals with autism have savant abilities.

FACT: Some savants are autistic, but not everyone who is autistic is a savant. While there is a higher prevalence of savant abilities among those with autism, only about 10 percent exhibit savant abilities. Some even have what is known as “splinter skills,” meaning they perform above average in one or two areas.⁵

MYTH: Autism is caused by poor parenting.

FACT: In the 1950s, it was assumed that autism was caused by emotionally distant or cold mothers, who were referred to as “refrigerator mothers.” Today, research is revealing answers about the cause of autism, and it is now known that parenting has nothing to do with it.⁵ In fact, there is no one cause of autism, just as there is no one type of autism. Instead, what has been learned so far is that, in most cases, it’s a combination of genetics and environmental factors that influence early brain development. During the past five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. And, when there is a genetic predisposition, nongenetic or environmental stresses further increase a child’s risk of autism. There is clear evidence of a number of risk factors for autism both before and during birth, including advanced age of parents at the time of conception, maternal illness during pregnancy and certain difficulties during birth, most notably those that cause periods of oxygen deprivation to the baby’s brain.⁸

There are also other genetic risk factors. Among identical twins, if one child has autism, then the other will also have the disorder about 36 percent to 95 percent of the time. In non-identical twins, if one has autism, the other is affected less than 31 percent of the time. Parents who have a child with autism have a 2 percent to 18 percent chance of having a second child with autism. And, people who have certain genetic or chromosomal conditions are more likely to have autism. For instance, about 10 percent of children with autism also have Down syndrome, fragile X syndrome and tuberous sclerosis.¹³

Recently, the link between autoimmunity and autism has been identified. In one study at the Center for Autoimmune and Musculoskeletal Disorders at The Feinstein Institute for Medical Research in Long Island, N.Y., researchers found that one in 10 women who have a child with autism has anti-brain antibodies. These antibodies don’t harm the brains of the women who produce them because of the blood-brain barrier, a filter that prevents most molecules from entering the brain. However, the immature blood-brain barrier of a developing fetus may let them through, allowing them to damage the brain and perhaps cause autism. In the study, the researchers screened blood plasma samples from 2,431 mothers enrolled in the Simons Simplex Collection, a registry of families with one child affected by autism and unaffected parents and siblings. They found that plasma from 260 of the women, or 10.5 percent, reacts strongly with the mouse brain tissue, a signal that the blood contains anti-brain antibodies. Samples from 318 mothers enrolled in a different autism registry, the Autism Genetic Resource Exchange, were also sampled, finding that 28, or 8.8 percent, of them also have anti-brain antibodies. In contrast, among a group of 653 controls drawn from the general population of women of childbearing age in New York City, only 17, or 2.6 percent, carry the autism-linked antibodies. This means the prevalence of these antibodies is about four times greater among mothers of children with autism than among controls. This is the largest survey yet on the prevalence of these anti-brain antibodies.¹⁴

In another study, researchers investigated whether autoimmune disorders and autism have a common genetic basis. They looked at the genomes of individuals in 941 families that have more than one child with autism, 3,000 individuals with an autoimmune disorder (ankylosing spondylitis, multiple sclerosis, rheumatoid arthritis or Crohn’s disease) and 4,500 controls. First, they identified all the single nucleotide polymorphisms (SNPs) — alterations to single DNA base pairs — associated with each disorder, and then they compared the SNPs associated with autism and those linked to autoimmune disease. They found a strong correlation between gene variants in individuals with autism and in those with ankylosing spondylitis or multiple sclerosis. Specifically, autism-associated SNPs increase the likelihood of developing ankylosing spondylitis, whereas they appear to protect against multiple sclerosis. They also found that autoimmune thyroid disease is slightly associated with an increased risk of autism. However, there was no association between autism and Crohn’s disease or rheumatoid arthritis.¹⁵

In April, a study showed that autism risk could be related to diabetes in the prenatal environment. The study, using the Kaiser-Permanente database, looked at whether the risk for ASD increased among offspring of mothers with type 2 diabetes during pregnancy, and, for those mothers who develop gestational diabetes, whether the time of onset during the pregnancy influences that risk or provides clues about critical periods of vulnerability. Of the 322,323 children studied, 3,388 were diagnosed with ASD, including 2,963 unexposed, 115 exposed to preexisting maternal type 2 diabetes, and 310 exposed to gestational diabetes. The unadjusted incidences were 1.77, 3.26 and 2.14 per 1,000, respectively. More than 99 percent of infants who were exposed to maternal diabetes in utero did not develop ASD. However, in adjusted analyses, the authors found an increased risk in the subgroup of children exposed to gestational diabetes at 26 weeks or earlier. The hazard ratio for preexisting type 2 diabetes was 1.21 and for gestational diabetes at 26 weeks or earlier 1.42. This suggests the timing for this environmental exposure is isolated to early pregnancy. As more women of child-bearing age are obese, understanding the effect of insulin and maternal diabetes on pregnancy outcomes is important.¹⁶

MYTH: Vaccines cause autism.

FACT: The idea that vaccines cause autism is perhaps one of the biggest myths about the disorder. This myth arose when an article published in the British medical journal The Lancet claimed a link between the measles-mumps-rubella (MMR) vaccine, gastrointestinal disease and autism. The article was written by an unknown British scientist, Andrew Wakefield, and 12 colleagues, and it was later found that the research had many problems: 1) There were more authors than subjects. The study was based on only 12 children from the hospital where Wakefield was working. 2) Subsequent analysis of the methodology, which should have been done during the peer review process, revealed that Wakefield cherry-picked the patients for the study. 3) The study stated that the kids developed cognitive problems a few days after the vaccine, but a simple investigation of hospital records revealed that, in several cases, parents reported problems before the vaccine. 4) Wakefield was getting money from lawyers planning on suing vaccine makers, and he owned a patent on an alternative to the MMR vaccine. Ten of the other 12 authors formally retracted their interpretation of the results in 2004, and the journal later retracted the article.¹⁷

Although the fear about a possible link between vaccines and autism persists, there is no evidence that supports the association. “Parents may make the association because it is often at around age 2 that we are now able to diagnose autism. This is a difficult diagnosis and we all search for reasons why. This also happens to be when many immunizations occur,” said Dr. Leonard Rappaport, director of the Developmental Medicine Center at Boston Children’s Hospital. “But given that there is absolutely no scientific evidence of this connection, we, as physicians, worry this may become an excuse for not having immunizations, which makes a child vulnerable to a host of other problems.”⁴

The most recent study that disproved the link between vaccines and autism was published in the April 21 edition of the Journal of the American Medical Association. In the study, researchers evaluated two questions: Does the incidence of ASD differ in younger siblings of affected children who are immunized with MMR versus those who are not? And, for the population as a whole, does the incidence of ASD vary as a function of MMR immunization status? They found that of 95,727 children with older siblings who were included in the study, 1,929 had an older sibling with ASD and 994 children had ASD diagnosed. The relative risk of ASD at age 2 years was 0.76 for children with older siblings with ASD and 0.91 for children with older siblings without ASD. The study authors wrote that they found “no harmful association between MMR vaccine receipt and ASD even among children already at higher risk for ASD.”^16,18

MYTH: Children can’t be diagnosed with autism until after age 4.

FACT: On average, the age of diagnosis in the U.S. has remained stalled at 4.5 years.19 However, research has shown that a diagnosis at age 2 can be reliable, valid and stable. And, studies have shown that parents of children with ASD notice a developmental problem before their child’s first birthday, including vision and hearing problems in the first year and differences in social, communication and fine motor skills at 6 months of age.³

Diagnosing autism can be difficult. One study that looked at the medical records of more than 2,700 children with autism at age 8 found a significant connection between age of diagnosis and how many symptoms were displayed. Children who displayed only seven of 12 recognized autism symptoms were diagnosed more than four years later, on average, than kids with all 12 symptoms. The median age at diagnosis was 8.2 years for children with seven symptoms and 3.8 years for those with all 12 symptoms.²⁰

Diagnosing ASD involves two steps: developmental screening and comprehensive diagnostic evaluation. Developmental screen tests will indicate if children are learning basic skills when they should or if they are having delays. These tests should be conducted during regular well-child visits at 9 months, 18 months and 24 or 30 months. All kids should also be screened specifically for ASD during regular well-child visits at 18 months and 24 months. And, additional screening is recommended if a child is at high risk for developmental problems or ASD.21 Several screening instruments have been developed to quickly gather information about a child’s social and communicative development within medical settings, including the Checklist of Autism in Toddlers (CHAT), the modified Checklist for Autism in Toddlers (M-CHAT), the Screening Tool for Autism in Two-Year-Olds (STAT) and the Social Communication Questionnaire (SCQ) (for children 4 years of age and older). During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism. The Autism Spectrum Screening Questionnaire (ASSQ), the Australian Scale for Asperger Syndrome and, the most recent, the Childhood Asperger Syndrome Test (CAST) are some of the instruments that are reliable for identification of school-age children with Asperger syndrome or higher functioning autism.²²

During a comprehensive diagnostic evaluation, a physician will review a child’s behavior and development, as well as provide hearing and vision screening, genetic testing, neurological testing and other medical testing.²¹

MYTH: Treatment for autism turns kids into robots.

FACT: While some say that behavioral therapy, which is the recommended treatment for autism, is highly impersonal and turns kids into robots, Dr. Skowron doesn’t believe that is true. “It seems very personal to me,” he says. “Based on the needs of the kids, you form a strong bond with the person. The families play a big role in the treatment, and they can have a great effect on the treatment of the child.”⁷

Scientific studies have shown that using early intensive behavioral intervention improves learning, communication and social skills in young children with autism. There are several types of  comprehensive behavioral early intervention: the Lovaas Model based on applied behavior analysis (ABA), the Early Start Denver Model, Floortime, Pivotal Response Therapy and Verbal Behavior Therapy.²³ With ABA, an intense behavioral intervention designed to improve the functioning and communication of children with ASD, a therapist works with the child directly, usually one-on-one, on specific behaviors for up to 30 hours per week. Research on ABA outcomes has shown significant improvement that lasts over time in the functioning of autistic children. Floortime is a more child-directed form of therapy that is more interactive. Some therapists use a purely ABA or a purely Floortime approach, while others use a combination of the two tailored to each child’s needs.⁴

But, intervention isn’t always limited to behavioral therapy. Some kids also require antipsychotic medications to treat severe symptoms of autism, which can include anxiety, depression or obsessive-compulsive disorder,⁷ and others require medicines to treat additional medical conditions such as sleep disturbance, seizures and gastrointestinal distress.²³ How much and which types of treatment are best will depend on the child’s unique needs.

MYTH: There is a cure for autism.

FACT: According to the National Institute for Neurological Disorders and Stroke, there is no cure for ASD. Some individuals “can learn to compensate with autism in very effective ways to the point that other people might not even know,” explains Dr. Skowron. “But whatever physical problems are in the brain of that person, those will remain throughout the person’s life.”⁷ There are some children who reach “best outcome” status, meaning they have scored within normal ranges on tests for IQ, language, adaptive functioning, school placement and personality, but they still have mild symptoms on some personality and diagnostic tests. In addition, there is growing evidence that suggests a small minority of persons with autism can move off of the autism spectrum. Theories about why this happens include the possibility of an initial misdiagnosis, the possibility that some children mature out of certain forms of autism and the possibility that successful treatment can, in some instances, produce outcomes that no longer meet the criteria for an autism diagnosis.²³

What is now known for sure is that intensive early intervention is critical for producing significant improvement in autism symptoms. “There is an important window for success during early childhood,” says Ware. “We now know that with early diagnosis, treatment and support, children with ASD can make strides never believed possible, even a decade ago.”⁴

Dispelling the Myths Now

In 2011, the total societal costs for caring for children with ASD were over $9 billion. On average, medical expenditures for children and adolescents with ASD are 4.1 to 6.2 times greater than for those without ASD.³ Unfortunately for most families dealing with this disorder, most insurance companies exclude autism from the coverage plan, and only half of the 50 states currently require coverage for treatments of ASD.²⁴

With the growing rate of autistic diagnoses, it’s more important than ever to identify what the actual prevalence rate is in the U.S. According to Michael Rosanoff, Autism Speaks’ director for public health research, the method that the Centers for Disease Control and Prevention (CDC) uses is likely underestimating the ASD prevalence. Currently, CDC’s surveillance system, called the Autism and Developmental Disabilities Monitoring (ADDM) Network, consists of 14 communities across the country that are meant to represent the U.S. as a whole. Within this network, CDC researchers examine educational and medical records of 8-year-olds for diagnoses of ASD based on the assumption that most children who have autism will be diagnosed by this age. But, says Rosanoff, this indirect, records-based approach misses children who have autism but have not been diagnosed and/or are not receiving appropriate medical or educational services. And, he adds, when we underestimate prevalence, we underestimate the needs of individuals with autism and their families. An Autism Speaks study found that direct screening of schoolchildren with autism produces a markedly higher prevalence estimate than does CDC’s indirect method.²⁵

CDC is continuing to monitor rates among grade-schoolers, but it is considering changes due to the recent overhaul of the criteria used to diagnose the disorder. With an investment of more than $20 million over four years, CDC is enhancing tracking at the eight ADDM sites and will launch two new sites. It is also expanding its national autism monitoring to include preschoolers at six of its sites. And, the ADDM staff will conduct research aimed at better understanding why prevalence has increased dramatically over recent years, and it will conduct education and outreach activities in local communities. “It’s vitally important to monitor changes in the average age of diagnosis to see if we’re identifying and getting services to kids earlier,” said Rosanoff. “It’s also crucial to maintain ongoing monitoring of prevalence over time and among different groups to better understand why prevalence is increasing and why we see differences among communities.”¹⁹

Indeed, the question concerning why the prevalence of ASD is rising will help to make earlier diagnoses and put early intervention strategies into place. It is also at the heart of quieting the fears and dispelling the fallacies about this tragic disorder.