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Key Takeaways
- The Diagnostic and Statistical Manual (DSM) categorizes autism into three levels of support needs: requiring support, requiring substantial support and requiring very substantial support.
- Each person diagnosed with autism will be assigned a level of support needs that can be used in allocating services.
- Despite updates to the DSM, many professionals and autistic self-advocates reject simplifying autistic needs to single labels because they lack nuance and inclusivity, and individuals’ needs aren’t fixed.
- Autistic people are unique individuals in unique environments; focusing on accommodations in inclusive environments can help autistic people thrive.
Autism is a condition that can be characterized by social and communication differences and a preference for sameness and repetition. There’s a common saying that “if you’ve met one autistic person, you’ve met one autistic person” because there is tremendous variability in how autistic traits present. The level of support each autistic person needs can also vary greatly. Each person diagnosed with autism will also be assigned a ‘level’ meant to reflect their support needs, but what exactly does this mean?
These support levels are outlined by the DSM, or The Diagnostic and Statistical Manual of Mental Disorders. This is the U.S. handbook for mental health diagnoses. The DSM is updated every few decades, and the DSM-5, released in 2013, marked a big shift in the classification and description of autism.
The DSM-5 combined the older diagnoses of Asperger’s syndrome, pervasive developmental disorder-not otherwise specified (PDD-NOS) and autistic disorder into one: autism spectrum disorder (ASD).
How are individuals diagnosed with autism?
Screening for autism occurs as young as 18 months, usually at routine pediatric checkups. Early screening tools such as the Modified Checklist for Autism in Toddlers (M-CHAT) help identify potential behavioral differences and differences in social and communication development. While autism is often identified in childhood, many individuals are diagnosed later in life, sometimes as adults.
For children and adults alike, a formal diagnosis is usually conducted by professionals such as psychologists, neurologists or speech-language pathologists using a combination of interviews, observations and assessment tools such as the Autism Diagnostic Observation Schedule (ADOS-2) or Autism Diagnostic Interview-Revised (ADI-R). Adult diagnosis may involve interviews about developmental history, observations of current behavior and self-report.
When individuals aren’t diagnosed until adulthood, it is often due to misunderstandings around their autism presentation. For example, people assigned female at birth may report more sensory sensitivities but fewer social difficulties than those assigned male at birth. They may respond to social rejection by internalizing (developing anxiety and depression) rather than externalizing (showing outward signs). This can be mistakenly explained as mere shyness, leading to a missed diagnosis.
While we know many autistic adults were misdiagnosed as children, we don’t know exactly how many for a wide variety of reasons. The best we can do is extrapolate based on the current number of children diagnosed. An estimated 2.21% of adults in the U.S. are autistic, and each is unique in their levels of support needs.
The old diagnostic labels emphasized functioning levels––“high” or “low” functioning––which is now outdated and recognized as potentially harmful. Instead, the DSM now categorizes autism by support needs into three levels:
- Level 1 (“requiring support”)
- Level 2 (“requiring substantial support”)
- Level 3 (“requiring very substantial support”)
Even with the updates to the DSM-5-TR, many professionals and autistic self-advocates do not endorse the concept that we can reduce an autistic individual’s needs to a single label. While these categories are often utilized for service allocation, so are worth understanding, this explanation of how the DSM categorizes support needs encourages readers to look beyond these labels to foster greater nuance and inclusivity.
What levels of autism support are
Support levels can be useful in medical settings. However, you won’t typically encounter these support levels outside of therapeutic settings because they often fail to capture the day-to-day realities of autistic individuals. Additional circumstances can also impact these realities, such as:
- Environmental factors
- Current demands placed on an individual
- Emotional states
These three support level categories exist as a guide, but they don’t necessarily reflect the support the individual will need in every environment.
Here’s a breakdown of each level of support need:
Level 1 Autism: Requiring support
Autistic people with a Level 1 diagnosis as defined by the DSM will likely encounter difficulties with:
- Understanding allistic (non-autistic) social norms
- Unexpected changes and task-switching
- Managing the expectations of predominantly allistic environments
These individuals likely prefer clear, direct communication and structured settings. Many people in this category try to camouflage their autistic traits to fit social expectations, commonly referred to as masking. This can result in being misperceived as needing less support than they actually do.
Many individuals in this category may have been missed as children, meaning they weren’t diagnosed with autism until adulthood due to misunderstandings around their autism presentation.
Examples of Potential Supports for Level 1
Social Communication:
- Access to peer-led support groups
- Clear, written communication
Environmental:
- Quiet or sensory-friendly areas
- Flexible scheduling
Independence:
- Tools for organization and task management
- Advocacy tools in healthcare and workplace
Level 2 Autism: Requiring substantial support
Those who are diagnosed with Level 2 support needs will likely benefit from more structure and communication support in predominantly allistic (non-autistic) environments. It may be difficult for them to engage in unstructured social settings or to interpret nonverbal cues.
Examples of Potential Supports for Level 2
Social Communication:
- Ongoing neurodiversity-affirming coaching
- Visual communication aids
Environmental:
- Sensory-friendly housing and community spaces
- Structured routines with clear schedules
Support System:
- Collaboration with support workers to build autonomy
- Neurodiversity-affirming therapists
Level 3 Autism: Requiring very substantial support
Those who are diagnosed with Level 3 support needs may be non-speaking and use augmentative and alternative communication (AAC) to express themselves. They may need significant support to navigate unaccommodating spaces, and sensory and stimming behaviors may be even more vital for their well-being.
They will especially benefit from environments that do not expect them to conform to neurotypical norms. It is important to understand and respect each person’s unique ways of communicating and interacting.
Examples of Potential Supports for Level 3
Social Communication:
- Augmentative and Alternative Communication (AAC)
- Speech and language support emphasizing comfort and autonomy
Environmental:
- Highly controlled sensory environments
- Consistent, predictable routines
Holistic Support:
- Multidisciplinary teams, including occupational therapists, speech therapists and mental health professionals
- Community inclusion programs designed to support engagement and self-expression
What levels of autism support are not
Despite potential usefulness in allocating services or in healthcare, there are many things that support levels are not:
Levels aren’t fixed
Each person diagnosed with autism will be assigned a support needs level, but it is important to understand that these are not static. An individual's true level of support needs can fluctuate greatly depending on environmental accessibility. For example, someone diagnosed with Level 1 support needs might navigate a predictable, sensory-friendly office environment with relative ease. However, the same person may experience significant challenges in a loud, chaotic environment with sometimes unclear expectations, such as a crowded airport.
Some environments will be very accommodating of an autistic person’s needs, which means they will require less support, whereas some environments will require more support for an autistic individual to navigate. Additionally, factors such as mental health struggles, burnout and sensory overload can greatly impact an autistic person’s experience of a setting.
Additionally, different diagnosticians might assign different support levels because they each have a different understanding of these levels. It’s important not to view support needs as fixed labels––rather, it is best to view each person as an individual with unique needs.
Levels don’t account for unique people in unique environments
The support level assigned to someone does not capture the complexity of the person’s identity or experiences. Autistic people tend to have what is known as a ‘spiky’ profile across a constellation of areas, which means their strengths and difficulties vary drastically in different domains. Someone can excel in many areas while they struggle in others.
Regardless of the level of support needs, all individuals deserve respect for their own style of communication, stimming needs, focused areas of expertise (sometimes known as ‘special interests’), and other autistic traits. We should avoid pathologizing individuals for their differences and instead focus on creating accommodating environments where individuals can feel safe, respected and understood.
Levels of support needs can be helpful in allocating services, but they do not capture a person’s unique profile of experiences and needs, nor do they address the individualized experiences individuals will have in unique environments.
A strengths-based model is more affirming than a deficit-based model, and respecting an autistic person’s preferences and needs in different environments is important in supporting their well-being.
Our shared aim should be to foster supportive environments where autistic individuals can feel safe and empowered to be themselves without having to camouflage their autistic traits. Creating inclusive spaces by providing accommodation is key to enabling autistic individuals to thrive.
How Prosper Health can help you
Are you an autistic person who wants to explore your own support needs? Prosper Health can help.
Getting support can feel impossible when you’re unsure of your needs—but getting to know your unique ‘spiky’ profile can be empowering.
Prosper Health has neurodiversity-affirming clinicians who can help identify your challenges and strengths. Not to mention, approximately 80% of our clinicians identify as neurodivergent themselves or have a close connection with neurodivergence and autism, so you can be sure that your provider will truly understand and empathize with your struggles.
Sources
American Psychiatric Association, D. S. M. T. F., & American Psychiatric Association, D. S. (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (Vol. 5, No. 5). Washington, DC: American Psychiatric Association.
https://www.cdc.gov/autism/hcp/diagnosis/index.html
https://www.cdc.gov/autism/publications/adults-living-with-autism-spectrum-disorder.html
Silberman, S. (2015). Neurotribes: The legacy of autism and the future of neurodiversity. Penguin.
https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233
https://www.uclahealth.org/news/article/understanding-undiagnosed-autism-adult-females
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