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

May 21, 2020

From learning differently to exhibiting unique behaviors in a social setting, there are a wide variety of signs your child might have autism. Encompassing a broad, diverse spectrum of behaviors and abilities, autism affects an estimated 1 in 54 children in the United States today, according to the Centers for Disease Control & Prevention (CDC). Understanding how the disorder is identified today is a key first step for any parent. While mental health care providers and pediatricians previously looked to five types of autism for a diagnosis, experts now support a different approach: one diagnosis known as autism spectrum disorder (ASD). 

Megan Hufton, a Madison, Wisconsin-based mom of 8- and 10-year-old boys, became familiar with this approach when her sons were diagnosed with ASD. 

“When my older son was diagnosed in 2014, I was very frustrated with the broad label,” she says. But by the time her younger son was diagnosed in 2016, Hufton says her approach had evolved. Instead of focusing on a label, she had learned to tune 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. 

With guidance from medical professionals, parents of children with ASD, like Hufton, are now thinking about their child’s strengths and challenges in a new, nuanced light. 

Here’s what parents need to know about how doctors currently diagnose autism, the levels of ASD and more.

Why the types of autism shifted to one diagnosis

The current diagnosis — autism spectrum disorder (ASD) — debuted in the latest edition of the DSM (DSM-5), published in 2013. Prior to that, they were categorized as five different types of autism: autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS), Asperger syndrome, Childhood Disintegrative Disorder and Rett Syndrome (a rare genetic disorder). 

But research found that these categories were not reliably diagnosed, according to Thomas W. Frazier, a doctor of clinical psychology and Autism Speaks chief science officer. “The diagnosis would shift over time and was partly dependent on the provider who made the diagnosis,” he says.

Therefore, experts landed on a single diagnosis, which allows for a more nuanced understanding of the disorder. “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.” 

And just as the types of autism became outdated, so too did qualifiers like “severe,” “mild,” “low-functioning” or “high-functioning.” The reason: These terms tend to overgeneralize a person's situation, explains Shore. Autism Speaks recommends using the terms “less affected/impacted” or “more significantly affected/impacted.”

“Additionally, 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,” explains Elizabeth Carino, a board-certified behavior analyst, a 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.

What are the levels of autism?

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

“This way of categorization avoids placing people into proverbial boxes in favor of describing the type and amount of support needed across the two major characteristic areas: social communication and restricted, repetitive behaviors,” explains Shore.

Here’s what each level means, according to the DSM-5:

Level 1: Requires support 

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 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.

What parents should know about an ASD diagnosis 

While doctors will generally now diagnose someone with ASD and a level, doctors might still refer back to pre-2013 diagnoses in an informal way, especially if they are trying to help a family better understand the kind of support their child might need, according to Frazier. 

For instance, when Hufton’s older son was diagnosed, her child’s psychologist told her that he was considered low-functioning because he required so much assistance to make it through the day. But when her younger son was diagnosed two years later, she had come to focus less on labels and more on her sons’ unique traits.

Given her experience, Hufton encourages parents to consider their child as an individual. “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,” Shore says. “The potential of people on the autism spectrum is the same as everyone else: unlimited.”

Tips and stories from parents and caregivers who’ve been there.

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