Why “high-functioning” and “low-functioning” autism labels cause harm
By Helen Edgar and David Gray-Hammond · From the Re-Storying Autism workbook, Module 2
You may have heard people describe others as being high- or lowfunctioning Autistic, especially in educational or clinical settings. This is now considered outdated, as it does not account for people’s fluctuating needs. People are either Autistic or they are not, and they may have different needs and co-occurring disabilities that need to be taken into account. High-functioning. Low-functioning. Mild. Severe. These labels are clinical inventions with little relationship to lived experience. They do not predict support needs, they do not explain capacity, and they do not capture fluctuating needs or reflect the reality of the Autistic person. Functioning labels serve two cultural functions, both harmful: 1. Gatekeeping Resources People labelled “low-functioning” are often those with learning disabilities and non-speaking, and they are frequently denied autonomy, agency, and meaningful choice. Those labelled “highfunctioning” are often those who appear to be doing well and are academically able; they are also denied the support they genuinely need. Both groups, and everyone in between, are failed by a system that relies on reductive functioning labels instead of understanding individual needs.
- Enforcing Normativity Functioning labels measure a person’s “usefulness” or conformity to capitalist norms rather than their well-being and genuine needs.
Being Autistic is a dynamic experience, and capacity fluctuates with things like:
- Sensory load & interoceptive awareness
- Burnout
- Trauma
- Stress
- Transitions
- Environment
- Masking
- Energy
- Socialising
Luke Beardon’s golden equation is relevant here to help understand how the environment we are in and the relationships we have with people affect people: Autism + Environment = Outcomes Autistic individuals are complex, adaptive beings whose capacities evolve in response to the ecosystem around them.
When we let go of functioning labels, we can begin to notice what actually matters: the person’s needs, not the system’s categories and labels. Capacity and energy change with the environment and is dependent upon the support a person has.
Keep going in the course
This is a short extract. The full lesson in Module 2: Identity, Language and Disability Models includes the video teaching, the rest of the workbook text, reflection questions for parents, carers and Autistic people, and progress tracking.