Understanding Autism Levels: Why They Don’t Define Us

Autism is often described in terms of “levels,” as outlined in the DSM-5. These levels were introduced to categorize the support needs of autistic individuals, but they can sometimes be more harmful than helpful in understanding the true nature of autism. Let’s dive into what these levels mean and why they fail to capture the complexity of autistic experiences.

What are Autism Levels?

In the DSM-5, autism is divided into three levels based on the amount of support an individual may require:

• Level 1 (Requires support): Individuals classified under this level often have milder difficulties with communication and social interactions. They may need help in managing certain aspects of their daily lives but can often function relatively independently.
• Level 2 (Requires substantial support): Those at level 2 may struggle more significantly with verbal and nonverbal communication. They often need more structured support throughout the day to manage social and environmental demands.
• Level 3 (Requires very substantial support): People at this level often face the most challenges in communication and daily functioning. They typically require full-time support to navigate their lives.

While these levels may provide a general sense of an individual’s needs, they paint an incomplete picture and can be misleading.

Why Autism Levels are Misleading

Autism is not static, and neither are the support needs of autistic individuals. The idea that a person can be neatly categorized into one level at all times does not reflect the reality of many autistic lives. Here’s why:

Support Needs Change with the Environment

Many autistic people experience fluctuations in their ability to function, often depending on their environment. For example, an individual considered “Level 1” in a familiar, comfortable setting might shift to “Level 2” or “Level 3” in an overwhelming or unpredictable environment. The change could be temporary, but it reveals the fluidity of support needs. A person can go from needing minimal help to requiring much more, depending on where they are and what’s happening around them.

From personal experience, I can tell you that there are environments where I feel in control and can handle things smoothly. In other settings, like busy, noisy places or when faced with unexpected changes, I need much more support. This fluctuation doesn’t mean I’ve “changed levels”—it means I’m responding to different environmental conditions.

Context Matters

Another issue with the concept of levels is that they don’t account for different settings. An autistic person’s support needs may vary significantly depending on where they are. For example, someone might function quite well at home, where they feel safe and in control, but require much more support in a work or social setting. Levels oversimplify these nuances, assuming the same level of support is needed everywhere, which is rarely the case.

Labeling Autistic Toddlers: A Limitation on Development

One particularly concerning aspect of these levels is how they are applied to young children, sometimes as early as toddlerhood. Labeling an autistic toddler with a specific level before they have had the opportunity to develop can limit their potential. Human nature is such that people may change how they behave towards a child based on the label, often treating the child differently or offering less opportunity for growth.

This kind of treatment can stunt development because it presumes that the child will never exceed the limitations of their assigned level. In reality, many autistic children may simply develop at a slower pace than their peers. Given the right environment, they can continue to grow and adapt.

The way a mother—or any caregiver—relates to an autistic child directly affects that child’s growth. If the child is treated based solely on the level they’ve been assigned, it could stunt their potential by limiting their access to the stimulation, challenges, and positive reinforcement they need to thrive. The child’s natural progression may be interrupted, not by their own abilities, but by the assumptions placed upon them.

Levels: A Non-Autistic Perspective

It’s also important to recognize that these levels were created from an external, non-autistic viewpoint. Non-autistics often fail to understand the internal experiences of autistic individuals, relying solely on observable behaviors. The result is an oversimplification of what autism truly is. Autism is not a linear scale where more support equals “worse” or less support equals “better.”

The concept of levels can unintentionally pit autistic people against one another, reinforcing harmful ideas that one form of autism is “better” than another. In reality, we all have different needs at different times, and those needs should not be judged or compared.

Different Diagnoses, Different Needs

There’s also the matter of co-occurring conditions that can affect support needs, like ADHD or intellectual disabilities. These additional diagnoses further complicate the idea of fixed levels.

• Autism with ADHD: When autism coexists with ADHD, it creates unique challenges. Issues with attention, executive functioning, and emotional regulation can make day-to-day functioning harder, sometimes necessitating more support than what might be expected from a “Level 1” diagnosis.
• Autism with Intellectual Disabilities: Intellectual disabilities can present additional challenges that significantly impact communication and independence, again varying the type and amount of support needed.

This variability, from person to person and even from day to day, shows just how limiting these levels are.

No One Level is Better than Another

The biggest problem with the autism levels is that they create a false hierarchy, as though being “Level 1” is something to strive for, and “Level 3” is something to avoid. But the truth is, no level is inherently better or worse. Every autistic person has their own strengths and challenges, and our support needs will change over time.

We must move away from the idea that these levels define us. Autism is a spectrum, and we should not be boxed into categories that don’t fully capture who we are. Each of us has different needs, and that’s okay. What’s important is ensuring that autistic individuals receive the right support at the right time, regardless of what level they’ve been assigned.

Conclusion: Looking Beyond the Labels

Autism is dynamic. We move through life with fluctuating needs based on context, environment, and co-occurring conditions. The concept of levels, while perhaps well-intentioned, often fails to capture the full picture. Instead of focusing on labels, we should be looking at the individual—what they need, when they need it, and how best to support them.

Ultimately, autism is a spectrum of diverse experiences, and each person’s journey is unique. By understanding this complexity, we can foster a world where all autistic individuals feel supported, understood, and valued for who they are, not the “level” they’ve been assigned.