Deeper Insights

As a licensed psychologist who provides evaluations for both children and adults to assess for autism, I often get asked, “What are the levels of autism and what do they mean?” I’d like to take a minute to give everyone the “real deal” about levels.

Since 2013, when the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, 5th edition) introduced support levels (1-3), which describe how much support a person needs to get through their days and weeks. The levels help to guide support and recommendations for the person at the time of their diagnosis. This is important to know, as levels typically change over time and a person’s life span, so often if someone is diagnosed young, their support level decreases significantly by the time they’re an adult. And since autism is a neurodevelopmental issue, it only needs to be diagnosed once; thus, the levels become less and less meaningful over time.

Level 1 (“requiring support”) means the person may have some difficulty starting conversations and/or keeping them going, may appear socially awkward to others, have trouble making friends, or struggle with back-and-forth (reciprocal) conversations. They may have less interest in frequent or sustained social interactions, may have difficulty with changes in schedule/routine, or may experience difficulty if things don’t go the way they had planned. They may also have a heightened interest in certain topics/activities and/or different types of body movements, or sensory sensitivities, or sensory seeking needs that help them stay regulated.

Level 2 ( “Requiring Substantial Support”) means the person may have more significant social challenges, including a different communication style, struggles in displaying emotion and reading non-verbal social cues of others, and may benefit from direct/literal language from others. These individuals may have significant challenges in coping with change/transitions, and have more frequent or more heightened interest areas and/or exhibit unique behaviors compared to Level 1 individuals. This person typically benefits from support both at home and at work/school.

Level 3 (“Requiring Very Substantial Support”) means the person has pronounced differences in verbal and nonverbal communication, may use few words, or be non-speaking. They may have significant struggles initiating or sustaining interactions with others, have extreme difficulty with change, and likely require help with daily life skills.

We no longer use terms such as high functioning or low functioning for many different reasons. In general, these terms are not neurodiversity-affirming as they may be stigmatizing, too simplistic, and do not account for a person’s ability to “mask” in certain areas. In summary, while it’s helpful to know about levels at the time that you, your friend, or family member receives a diagnosis of autism, the levels are much less meaningful over time.