"Level 1" and "Level 2" Autism: A Problematic Misunderstanding + Misnomer
When discussing autism, the terms "low support needs" (also known as "level one") and "moderate support needs" ("level two") are often used by non-autistic folks, the medical community, and so-called ‘autism moms’ groups to describe individuals who might require less assistance compared to those with "high support needs" ("level three"). However, these labels can be misleading and fail to capture the significant challenges faced by many autistic individuals with so-called "lower" or "moderate" support needs.
1. The Hidden Costs of Communication
While individuals with "low" or "moderate" support needs may be able to communicate verbally (sometimes when the conditions are right), the internal costs of doing so can be immense. Unlike non-autistic adults, autistic adults who can communicate verbally often burn through the mental and emotional resources ("spoons") quickly, leading to:
Meltdowns: Intense emotional reactions to overwhelming situations and chronic stress. Meltdowns can involve crying, screaming, or physical outbursts, and are often misunderstood as tantrums rather than expressions of extreme stress and overwhelm.
Irritability: Increased sensitivity to stimuli and interactions by autistic folks (of all “level types”) can lead to heightened central nervous system distress and thus irritability. This often manifests as frustration over seemingly “minor issues” and can strain relationships and daily interactions.
Exhaustion and Chronic Fatigue: Autistic folks of all “levels” experience persistent tiredness that is not relieved by rest. This can impact daily functioning, making it difficult to maintain work, social relationships, and personal responsibilities.
Chronic Pain: Another characteristic of an autism profile (of any “level”) is chronic physical discomfort leading to chronic pain. This chronic discomfort and chronic pain is often exacerbated by stress and sensory overload. Common areas of pain include persistent (meaning daily or several times weekly, as a baseline, even when doing well) headaches, muscle aches, and joint pain, which can be debilitating over time.
2. Struggling with Activities of Daily Living (ADLs)
Many “low and moderate support needs” autistic individuals silently struggle with ADLs, not due to physical incapacity, but because of cognitive and executive functioning challenges. This can manifest in:
Difficulty with Showering: The process can be overwhelming due to sensory sensitivities (e.g., the feel of water, temperature changes) and the routine itself, leading to avoidance, hygiene issues, and shame.
Challenges with Dressing: Deciding what to wear involves much planning and decision-making, which can be taxing for autistic people (in any support needs category). Additionally, managing the sensory aspects of clothing (e.g., tags, textures) adds another layer of difficulty for all autistic folks.
Issues with Feeding Oneself: Struggles with grocery shopping involve navigating stores, making choices, and managing sensory inputs. Meal planning and cooking require executive functioning skills, which can be severely limited for autistic folks of any level, resulting in poor nutrition, irregular eating patterns, impacts on one’s physical health, and again …. shame.
Caring for Home and Children: The demands of maintaining a household (cleaning, organizing, shopping, repairing things as they break or need changing, ie, dishwashers and lightbulbs) and parenting (providing consistent care and attention, managing the sensory input, social responsibilites, and logistical / executive functioning strains of school) can be overwhelming. The low energy and executive functioning challenges often lead to feelings of overwhelm, inadequacy, guilt, and you guessed it …. more shame.
3. Sensory Overwhelm
Autistic individuals often experience sensory overload that can significantly impact their daily lives:
Painful Auditory (and other sensory) Experiences: Everyday sounds can be excruciating, such as hearing electricity or noise levels that are typical for non-autistic individuals. This can lead to avoiding certain environments and experiencing distress in noisy settings. This can also happen with painful textures, pain around “normal touch”. Imagine being in pain on a regular basis, while many of the people around you would have no idea this is happening and perhaps gaslight you when you express this. Imagine this is your daily reality, and the cost of existing in the world.
Sensory Icks: Textures, smells, and other sensory inputs can be intensely distressing. These sensory aversions are often dismissed by others, leading to misunderstandings, further gaslighting, and chronic discomfort just existing in the world.
Overwhelm with Physical Touch: Physical affection, even from loved ones, can be overwhelming. Balancing the need for connection with the sensory discomfort of touch can be challenging, impacting relationships and personal well-being.
4. The Weight of "Normal" Expectations
Constantly feeling unable to meet the expectations of a "normal" adult life can lead to:
Shame and Guilt: Internalizing societal pressures to perform and behave like non-autistic adults, leading to feelings of inadequacy and self-criticism.
Relationship Troubles: The struggle to meet both personal needs and the needs of loved ones can strain relationships. Misunderstandings and unmet expectations often result in conflicts and emotional distance.
5. Compounding Overwhelm
The cumulative effect of these challenges often results in:
Frequent Meltdowns and Shutdowns: Overwhelming emotional and sensory responses that can result in total withdrawal (shutdowns) or intense emotional outbursts (meltdowns).
Autistic Burnout: A state of physical, mental, and emotional exhaustion caused by prolonged stress and overexertion, often leading to a significant reduction in daily functioning - which can last for weeks, months, years in some cases and result in poorer health outcomes for autistic adults (of all support levels) compared to non-autistic adults.
Substance Overuse and Self-Harm: Some individuals may turn to substances or self-harming behaviors as coping mechanisms to manage overwhelming stress and sensory input, which can negatively impact one’s quality of life and put the person at risk for substance addiction as well as accidental suicide due to self-harming behaviors.
Chronic Suicidality: Persistent thoughts of self-harm or suicide due to the unrelenting pressure, exhaustion, and feelings of hopelessness are common for “level one” and “level two” autistic folks - and interestingly occur at the highest rates for “level one and level two” autistics compared to “level 3” autistic folks.
A Caution on Support Level Delineations
It is important to note that the terms "level one," "level two," and "level three" are often used by non-autistic individuals and are not well-received within the autistic community - they are often characterized as offensive, ABLEIST, and problematic within the autistic community. These labels are reductive and fail to accurately represent the diverse and nuanced experiences of autistic people. Moreover, these terms are not considered neurodiversity-affirming, and they are often rooted in ableism, which can be really harmful. The autistic community tends to prefer a more individualized and respectful approach to understanding and supporting each person's unique needs.
Final Thoughts
Autism is a spectrum, and the support needs of autistic individuals can vary widely and change over time. Rather than relying on potentially misleading labels, we should strive to understand and accommodate the unique challenges and strengths of each person. Embracing a neurodiversity-affirming perspective means recognizing and valuing the diverse experiences of autistic individuals without reducing us to simplistic categories - this approach fosters empathy, respect, and effective support for all autistic people.
