Understanding autism: Myths, facts and resources

Autism spectrum disorder is developmental condition caused by differences in the brain. Among children who are eight years old, about one in 31 have ASD, according to the Autism and Developmental Disabilities Monitoring Network. While scientists are still learning a lot about autism, there are some truths and pervasive myths that exist.

What is autism?

Autism spectrum disorder, or ASD, is a lifelong neurodevelopmental disorder, which describes differences in the ways the brain works. Someone with ASD may behave, communicate, react or interact differently than other people.

ASD lasts throughout a person’s life. While it has historically considered to be more common in boys, recent studies show that female patients are often misdiagnosed, diagnosed later than male patients and tend to have less obvious symptoms. Autism is a spectrum disorder, which means it shows up differently in each person, and the traits can change over time.

How is autism diagnosed?

Today, ASD is often diagnosed in childhood, but some people are not diagnosed until adulthood. While some children show symptoms before 12 months of age, others may not show obvious symptoms until they are 24 months of age or older.

Parents and caregivers are often the first to notice their child is missing developmental milestones. Signs of ASD in children may include:

• Little to no social smiling or engaging facial expressions as a baby
• Decreased or avoiding eye contact
• Delayed speech or babbling
• Loss of language or social skills gained previously (also known as regression)
• Struggles understanding other people’s feelings or emotions as they grow older
• Repetitive motor movements, like flapping hands or rocking back and forth, or use of objects, like lining up or sorting toys
• Intense or strong interests in objects or specific topics

Diagnosing a patient with ASD involves more than simply noticing symptoms. A child’s provider will talk with a parent or caregiver to better understand how a child behaves and interacts with others. If ASD is being considered as a diagnosis, the provider will also use standardized tools to evaluate the child’s social communication skills, play and behavior. They will use multiple sources of information—such as observations, parent interview and standardized assessments—to determine if the child meets DSM-5 diagnostic criteria for autism spectrum disorder. DSM-5 is evidence-based guidelines for diagnosis from the American Psychiatric Association. The provider may also consider other conditions that often occur with ASD, like attention-deficit/hyperactivity disorder (ADHD), anxiety, intellectual disability and/or learning disabilities. ASD does not cause these conditions (or vice versa), but sometimes they happen together.

“Parents of young children often ask, ‘Does my child have developmental delays? Do they have autism? Do they have both?’” said Dr. Elesia Hines, a clinical psychologist at Riley Children’s Health. “Our assessment tools and clinical judgment can help us differentiate between those diagnoses. Then we can make personalized recommendations for treatment, education and community resources. Our goal is to support the child and family as best as we can.”

Why is early diagnosis important?

Identifying ASD early in a child’s life helps the family, caregivers, doctors and educators provide the best support for each child’s individual needs. Early intervention therapies for ASD help children gain skills and meet their full potential. Early diagnosis also helps public schools ensure children with ASD get the support they need through individualized education plans. As part of the Act Early initiative from the U.S. Centers for Disease Control and Prevention, Act Early Indiana is a local group promoting awareness of healthy child development and early detection for ASD.

What causes autism?

Scientists believe there are likely multiple causes of ASD that act together to change the way the brain develops. One myth that has continued to spread—despite being repeatedly disproven—is that autism is caused by receiving a vaccine. Specifically, some people believe the measles, mumps and rubella (MMR) vaccine causes autism.

Despite many large research studies that have found no association between vaccines and autism, the myth persists that the MMR vaccine causes autism. One reason this confusion exists is because the first dose of the MMR vaccine is delivered around the same time that the first indicators of autism may appear—around 18 to 24 months—and some people draw the conclusion that the two are linked.

Likely the biggest cause for confusion over vaccines and autism, however, is the Wakefield Study. This 1998 paper written by Andrew Wakefield and his colleagues was published (and later retracted) by “The Lancet.” The paper claimed a link between the MMR vaccine and autism based on a study of 12 select children. The claims were quickly disputed by many follow-up studies that could not repeat Wakefield’s findings. Wakefield’s results were widely criticized for the small sample size of patients, his undisclosed financial conflicts of interest and flawed conclusions.

Though the Wakefield study was retracted and widely criticized, the damage was done: Some parents became hesitant to immunize their children. MMR vaccination rates continue to fall 27 years later, and measles outbreaks are spreading among unvaccinated children.

“We don’t fully understand what causes autism, but there are many large research studies that have shown no association between vaccines and autism,” said Dr. Hines. “Research suggests that autism runs in families, and there are genetic and environmental influences that may increase risk for autism.”

What resources are available to autistic people?

There are a variety of state and national resources available for people with ASD and their families. Some of those resources include:

• Indiana Resource Center for Autism
• Learn the Signs, Act Early
• Autism Society of Indiana
• Indiana Family to Family
• IN*SOURCE
• Arc of Indiana

It's also critical to make resources available for adolescents and adults with autism.

“A lot of attention has been paid to early intervention, which is so important because it makes a difference in helping children gain meaningful skills. But as autistic children get older, that support falls off,” Dr. Hines said. “There aren’t nearly as many providers for adults with developmental disabilities, and employment can be difficult to access and maintain. It’s important to create more opportunities for autistic adults to access post-secondary education, employment and help finding their community.”

With all the discussion surrounding autism, Dr. Hines says people with ASD should be a part of the conversation. About one in 45 adults in the United States has autism, and it’s important to hear their perspectives.

“The rallying cry in the disability rights movement is: ‘Nothing about us without us.’ We have to center autistic voices and continue working toward inclusivity and acceptance. It’s important to consider the child’s needs and perspective, how we can support the child’s caregivers and work together to help this child grow and live a fulfilling life.”