Autism spectrum disorder: What parents should know about diagnosis

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What parents need to know about how autism spectrum disorder is diagnosed

Experts and parents offer insight on deciphering what an autism spectrum disorder diagnosis actually means.

What parents need to know about how autism spectrum disorder is diagnosed

From learning differently to exhibiting unique behaviors in a social setting, there are a wide variety of signs your child might have autism spectrum disorder (ASD). Encompassing a broad, diverse spectrum of behaviors and abilities, autism affects an estimated 1 in 44 children in the United States today, according to the Centers for Disease Control & Prevention (CDC). Understanding how ASD is diagnosed, and the “levels” that are assigned to it, is a key first step for any parent. That said, both the diagnosis, as well as the labeling, can sometimes be difficult and frustrating for parents.

Megan Hufton, a Madison, Wisconsin-based mom of 10- and 12-year-old boys, had this experience when her sons were diagnosed with ASD. But she was able to eventually look beyond the label and instead at her individual kids — which helped immensely.

“When my older son was diagnosed in 2014, I was very frustrated with the broad label [of ASD],” she says. But by the time her younger son was diagnosed in 2016, Hufton says her approach evolved and she instead tuned into her son’s struggles, challenges, strengths and learning techniques. “I knew he was nonverbal, I knew he struggled with anxiety and I knew that he needed 1-1 support at all times,” she says.

An autism spectrum disorder diagnosis is nuanced, and no two individuals with ASD are alike. That said, here’s general info on what a diagnosis of ASD can mean.

What is autism spectrum disorder?

According to the CDC, autism spectrum disorder is a “developmental disability caused by differences in the brain.” People with ASD may have “different ways of learning, moving or paying attention;” however, it affects every individual differently.

“While people on the autism spectrum share common characteristics related to social communication, repetitive, restricted behaviors, sensory issues, etc., there is great diversity within the autism spectrum,” says Stephen Shore, a doctor of education and clinical assistant professor at Adelphi University’s College of Education and Health Sciences in New York. “When you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum.”

“When you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum.”

—Stephen Shore, doctor of education and clinical assistant professor, Adelphi University’s College of Education and Health Sciences

It’s also important to look at potential accompanying issues to ASD when getting a diagnosis, explains Elizabeth Carino, a board-certified behavior analyst, licensed behavior analyst and director of behavioral supports for Greystone Programs, Inc., a New York state-based nonprofit that provides services for children, adults and families with autism and other developmental disabilities.

“Practitioners must specify whether someone with ASD has accompanying intellectual impairment, language impairment, any known medical or genetic condition or any other neurodevelopmental, mental or behavioral disorder,” she says.

What are the autism spectrum disorder levels?

Along with diagnosing a child with autism spectrum disorder (ASD), doctors assign a “support level” — 1, 2 or 3 — that correlates to a particular type and amount of support.

“In 2013, the American Psychiatric Association (APA) created a single diagnosis of autism spectrum disorder,” explains Matthew Edelstein, a clinical psychologist and board-certified behavior analyst at the Behavior Management Clinic in the Department of Behavioral Psychology at Kennedy Krieger Institute in Baltimore. “Previously, individuals could have a variety of different diagnoses with similar features, such as Asperger’s Syndrome or Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS). Currently, there are levels of support coupled with a diagnosis of ASD in order to help providers understand what type of care an individual might need.”

Here’s what each ASD level means, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and Edelstein:

Level 1: Requires support 

“This indicates an individual with autism may have challenges with social interaction, organization and planning,” says Edelstein.

People in this category require support for social communication, as they might have difficulty initiating interactions or responding to social overtures. They may exhibit decreased interest in social interaction, inflexibility of behavior, difficulty switching between activities or problems with organization and planning that hamper independence.

Level 2: Requiring substantial support

People given this diagnosis have trouble with verbal and nonverbal social communication and might struggle even with supports in place. Their initiation of social interactions is limited and they have reduced or abnormal responses to social overtures from others. They might have distress and/or difficulty changing focus or action.

“Level 2 indicates that the individual with autism may have trouble communicating their wants and needs to others,” explains Edelstein. “In addition, they may have very restricted interests and engage in repetitive behaviors that could interfere with their daily functioning.”

Level 3: Requiring very substantial support

People who are diagnosed as level 3 have severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions and minimal response to social overtures from others. They have great distress/difficulty changing focus or action.

When folks are diagnosed with Level 3, this means they likely require substantial support, notes Edelstein. “These individuals often have significant difficulty communicating and interacting with others who do not know them well.”

What parents should know about an ASD diagnosis

Getting an ASD diagnosis is a process — and an emotional one at that, notes Jenny Root, a board-certified behavior analyst and associate professor of Special Education in the School of Teacher Education at Florida State University.

“There can be a grieving process for parents when their child is getting diagnosed,” she says. “But don’t be afraid or shy away from the process, as it will give you access to support, resources and education.”

Edelstein adds that getting a diagnosis involves multiple steps and the forms of communication clinicians use can vary, depending on the provider.

“Unfortunately, there is no medical test, like a blood test, that can be done to diagnose autism,” he says. “Neurologists, pediatricians or psychiatrists will likely use an autism screening tool coupled with the information about your child’s development provided during regular well-visits. Other professionals, such as child psychologists or speech-language pathologists, may use a more comprehensive developmental evaluation, which involves structured observations of the child and caregiver questionnaires.”

“There are a number of different professionals that are qualified to provide an autism diagnosis,” he says, “and the information that is provided to families greatly depends on the providers.”

That being said, once you have a diagnosis, you’ll also have a level, notes Root. “This way, you know what supports are needed right away,” she says.

Focus on your child

Given her experience, Hufton encourages parents to consider their child as an individual, as opposed to a diagnosis or a level. “My children’s future is not based on where they fall on the spectrum,” she says. “My children’s future is based on what we help them achieve. What their interests are and what their strengths are. The extra labels have nothing to do with that. As a parent, I advocate for them to get accommodations and services that will help them based on what I observe about them individually.”

When it comes to fixating on a specific label, Shore couldn’t agree more. “It’s up to educators, therapists, parents and others in allied fields to avoid thinking of autism as a series of deficits, disorders and disabilities,” she says. “The potential of people on the autism spectrum is the same as everyone else: unlimited.”