Autism and “Levels of Support”

“Level of Support” as Part of an Autism Diagnosis

We talk about an autism spectrum because the signs and symptoms of autism fall within a range, or spectrum. Autistic people can experience these autistic traits differently, and people with autism can look very different from one another – even though they share these core traits in certain ways.

This is one reason that a diagnosis of Autism Spectrum Disorder (ASD) under the DSM-5 (the current edition of the Diagnostic and Statistical Manual of Mental Disorders) includes an indication of the “level of support” the person requires for their autism symptoms. The DSM names three levels of support, defined as:

• Level 1: Requiring Support
• Level 2: Requiring Substantial Support
• Level 3: Requiring Very Substantial Support

A Level of Support is assigned to each of the two main areas of development considered when diagnosing autism. Here are examples of what this could look like:

• When he is diagnosed, Amir has “level 1” support needs in Social Communication. He needs prompting to ask for help and some coaching to understand facial expressions and other non-verbal communication. His Restricted Interests and Repetitive Behaviors are ranked a “level 2.” He gets so focused on his favorite things, like dinosaurs and listing out their cool characteristics, that changing his focus to other things, like schoolwork, can cause him a lot of distress.
• Bella needs “level 3” support with communication when she is diagnosed; she doesn’t use any words or gestures yet to show her caregivers what she needs or wants. She spends a lot of her time lining up blocks and other toys and gets frustrated when others try to play with her, so she also has “level 3” support needs in the area of repetitive behaviors or restricted interests.

Support Needs Change Over Time

Autism “levels of support” are a useful tool in some ways, a sort of shortcut to understand if an autistic person has relatively higher or lower support needs at the time of their diagnosis. However, they don’t tell us much about what their future will look like, or what specific supports each person needs to thrive.

The support level indicated with an autism diagnosis is only a snapshot in time for that person. Support levels can and do change over time. A person may need less support as they learn new skills, gain confidence, become experienced with people, settings and demands that were once challenging for them. Someone might need more support as they transition to a new school or job, enter puberty, or face other unfamiliar circumstances for the first time.

In fact, an autistic person’s need for support with their autism symptoms can even change from day to day, or within a given day, depending on what’s going on for that person at that time.

What does support actually look like?

In daily life, what’s more important than the support level number is being able to describe and advocate for the support a person really needs. Advocating for support can start with a question like this: What do I (or what does my child) need to feel safe and comfortable, to gain independence, to reach their goals, to connect with others?

You can learn more and listen to the answers some people have given to this question in this video: Conversations About Autism: Levels of Support.

To learn more about the diagnostic criteria for ASD, visit the Centers for Disease Control and Prevention (CDC) Autism Spectrum Disorder webpage.

To learn more about the Developmental Disabilities Administration, which provides support and services for eligible individuals with autism in Washington State, visit Informing Families.

By Joy Gehner, Family Advocate and Jennifer Mannheim, ARNP, Seattle Children’s Autism Center

Is there a topic you’d like us to cover in a future Autism Blog? Send your ideas and feedback to TheAutismBlog@seattlechildrens.org.