Functioning labels are useless for the autistic person.
More Problems with Functioning Labels
Functioning labels such as “high-functioning,” “low-functioning,” and terms like “profound autism” impose external judgments that often deny Autistic people access to support, undermine autonomy, and distort how our needs are understood. Autistic advocacy and research show these labels are harmful and inadequate, and that naming specific support needs is a more just and respectful way forward.
Words That Wound: Why Functioning Labels Harm Autistic People
Functioning labels don’t describe us; they gatekeep access to support, autonomy, and opportunity.
Words That Wound: Why Functioning Labels Harm Autistic People
Functioning labels create a false binary that Autistic people are forced to live inside, either being “not disabled enough” to deserve support or “too disabled” to be trusted with autonomy and our voices are silenced.
There is no safe side of that divide; these labels operate as gatekeeping mechanisms, determining who is granted support, whose needs are taken seriously, and whose autonomy is respected (Autistic Self Advocacy Network, 2021; Stop ABA, Support Autistics, 2019).
Words That Wound: Why Functioning Labels Harm Autistic People
Functioning labels are weapons used against us.
Functioning labels are harmful constructs.
The thing so many Autistics have pointed out about functioning labels is that we are called “low-functioning” by those who choose to ignore our strengths and “high-functioning” by those who choose to ignore our challenges. There is no official definition for these functioning labels. I’ve noticed researchers defining what they mean when they say they are studying a low functioning or high functioning population, and the chosen definitions vary from study to study, complicating meta-analyses. The labels are meaningless in an objective, scientific sense.
Several years ago I was looking for some help and was rejected by one agency, which said I was too high functioning and referred me to another agency. That second agency rejected me for being too low functioning. I concluded that function labels are what others use to try to control us and act as gatekeepers to the things we need to survive and thrive. Functioning labels are weapons used against us.
On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies — THINKING PERSON’S GUIDE TO AUTISM
Is Stephen Hawking low-functioning? Is being able to tie one’s shoes the pinnacle of human achievement?
@shonadav
Children grow up. Autistic children are children. The development curve might have more turns, but it tends towards the same end point. Some parents use functioning labels as a way to show how many challenges one autistic has compared to another. The more challenges there are, the lower the grade is. These parents are missing the point. When we experience hard moments, it feels bad no matter how you grade us. Everything can simply stop “functioning” even if we are said to be “high-functioning”.
More Problems with Functioning Labels
Aside from the fact that these labels are arbitrary, divisive, imprecise, and inaccurate, they just don’t make sense. As someone (not me) brilliantly stated, “Low functioning means that your strengths are ignored; high functioning means that your deficits are ignored.”
Respectfully Connected | Face the truth: what you REALLY mean when you say “low-functioning”
“You don’t speak for everyone = be quiet.
@sojasarkasmer
What about low functioning people? = be quiet.
You’re high functioning = be quiet.”
“When mothers and fathers hear the term low-functioning applied to their children, they are hearing a limited, piecemeal view of their child’s abilities and potential, ignoring the whole child. Even when a child is described as “high-functioning,” parents often point out that he continues to experience major challenges that educators and others too often minimize or ignore. When professionals apply these sorts of labels early in a child’s development, it can have the effect of unfairly predetermining a child’s potential: if “low,” don’t expect much; if “high,” she’ll do fine and doesn’t need support.”
Uniquely Human: A Different Way of Seeing Autism
Being called high-functioning can invalidate the daily struggles of people with autism.
Being called low-functioning can be hurtful and stigmatizing to those with autism who need more help with their disability.
The autism spectrum isn’t a linear spectrum between very autistic and a little autistic but rather a wheel with many colors and shades.
Why Many People With Autism Dislike Functioning Labels | Psychology Today
There is a long history of functioning labels being used to divide the Autistic community, both externally and internally. Externally, function labels get leveled at us from the autism community. (The Autistic community is the community of people who are actually Autistic. The autism community is a larger community comprised of everyone with any stake in autism at all: Autistic people plus non-autistic parents of Autistic children and adults, doctors, researchers, teachers, and so on.)
The autism community gives us narratives about functioning labels like:
- Autism should never have been made so broad. Those high-functioning people aren’t really even autistic and they are taking away money and resources that could be going to help children like mine.
- High-functioning autistic people aren’t disabled and we should help them because they come up with great ideas that will save the world. Low-functioning autistic people, however, are suffering and disordered and we should keep looking for a cure to help them.
- People with Asperger’s (a.k.a. mild autism, a.k.a. high-functioning autistics) have no excuse for not working. If they are on disability they are just scamming the system. Only low-functioning autistics deserve disability.
- High-functioning people should never be institutionalized. Only low-functioning autistics need to be in institutions and sheltered workshops.
Sometimes Autistics who have internalized the ableism and division that we hear every day from the world around us echo these divisive beliefs. I have met people who refer to themselves as “high-functioning autistics” because they are ashamed or afraid that if they just call themselves “autistic” they will be accused of lying or they will be mistaken for “somebody who might have to wear adult diapers and maybe a head-restraining device,” as one leader in the Asperger’s community said when he heard the DSM-5 was going to remove Asperger’s syndrome as a distinct diagnosis. Others have held on to the Asperger’s/Aspie identity despite it no longer being an official medical diagnosis.
On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies — THINKING PERSON’S GUIDE TO AUTISM
Those of us that are perceived as high-functioning are just very good at masking. Masking is a skill we learned in childhood and usually is the result of going through treatments that taught us social skills or parenting, and socialization that taught us any time we did anything that made us happy or comfortable is wrong. We were taught to mask by growing up in a world in general that has sent us the message that all our natural behaviors are aversive.
Why Many People With Autism Dislike Functioning Labels | Psychology Today
Many professionals talk about autistic people’s “functioning labels.” Functioning labels are a way to describe how well people learn, take care of themselves, and live in the community. People will often talk about “high-functioning” and “low-functioning” autistic people when they are describing them. Even though people who talk about high-functioning and low-functioning autistic people often mean well, these labels are not accurate for many people. Functioning labels do not always relate to people’s real skills and can be based on hurtful stereotypes about autistic people. They also assume that people’s skills cannot change over time.
Many people use people’s intelligence to determine whether they are high-functioning or low-functioning, but many autistic people’s daily living skills are not affected by how intelligent they are. Someone can learn quickly and have a hard time with daily living skills, while someone else who learns more slowly can find the same skills easy most of the time. Using these labels can make it hard for people to get services. If you do not have an intellectual disability, agencies may tell you that you are high-functioning and do not need help, even if you’re struggling to stay fed, clothed, and clean. If you do have an intellectual disability, you may be told you are low-functioning even if you don’t need as much help with daily living skills.
Sometimes people can call the same person “high-functioning” and “low-functioning” at different times in their life. People have said I was “high-functioning” for most of my life, but when I was very young and was non-speaking, they would have said I was “low-functioning” because they thought I had an intellectual disability. Saying that people are “low-functioning” is especially hurtful, because it means that some people will have low expectations of you and will not expect you to learn, grow, and pick up new skills.
The Problems with “High” and “Low” Functioning Labels
Instead of talking about functioning labels, we should talk about the specific kinds of support people need.
The Problems with “High” and “Low” Functioning Labels
Functioning labels organise access to support, autonomy, and power.
Functioning labels don’t describe us; they organise access to support, autonomy, and power. They are often used to justify the denial of support to those seen as “high functioning,” while restricting autonomy for those seen as “low functioning”. Functioning labels were never designed to support Autistic people, they were designed to make Autistic people legible to systems and have power over us.
If you are Autistic and have ever been described as “high-functioning” or heard someone you love described as having “Profound Autism”, you will know these words do not sit lightly. They shape how people see us, how much support we are offered, and what others believe we are capable of.
Functioning labels are not descriptive tools; they are used within systems of sorting people into categories. They reduce Autistic people to how closely we approximate neuronormativity, and in doing so, they shape who is believed, who is supported, and who is denied, who is heard and who is silenced. They are words that cause wounds.
They are used to justify withholding accommodations from those seen as “too able,” while simultaneously stripping autonomy from those seen as “too disabled.” They do not protect us; they position us and cause harm. There is no accurate version of a functioning label, only different ways of being misunderstood. Functioning labels are not only inaccurate, they are also harmful (Autistic Self Advocacy Network, 2021; Finn Gardiner, 2018).
Words That Wound: Why Functioning Labels Harm Autistic People
Functioning labels such as “high-functioning,” “low-functioning,” “mild,” “severe,” or describing Autistic people in terms of “levels,” are shorthand categories often imposed by those researching on us or writing about us. They classify Autistic people based on our perceived outward behaviour and how closely we align with normative expectations, rather than reflecting our lived experience or actual support needs.
As Gardiner (2018) explains, the same person may be labelled “high-functioning” or “low-functioning” depending entirely on what someone chooses to notice and the context in which they are. These labels do not describe who we are; they reflect what others value, expect, or find acceptable. Autistic advocacy-led spaces have long argued that functioning labels operate as compliance-based judgments, measuring how well an Autistic person performs according to neuronormative expectations rather than recognising our actual strengths and needs.
Words That Wound: Why Functioning Labels Harm Autistic People
Continuous Fluid Adaptation
One of the deepest problems with functioning labels is that they treat being Autistic as a fixed, stable state, a set of traits that can be observed, measured, and ticked off.
Words That Wound: Why Functioning Labels Harm Autistic People
Being Autistic is not a static way of being, it is dynamic, fluid and context-dependent. Our needs shift across environments, relationships, and our lifespan. Burnout, sensory overwhelm, other co-occurring physical and mental health needs and other life circumstances all shape how much support we need at any given moment. From a monotropic perspective, functioning labels flatten the depth of attention, energy, and experience into static categories that cannot reflect how we actually move through the world, how our attention flows, how it becomes overloaded, and how it is sustained or supported.
This fluidity is also shaped by intersectionality and race, gender, class, sexuality, communication style, and access to resources, all of which influence how Autistic people are perceived, supported, or dismissed. The same person may be read as “coping” in one context and “struggling” in another, not because they have changed, but because the environment, expectations, and biases around them have.
A label applied in childhood cannot predict a person’s needs later in life. Many people who were denied support because they appeared “high-functioning” later often reach burnout, and their mental health is affected. Others, labelled “low-functioning,” may develop new forms of communication, connection, and autonomy when given the right conditions and support and some people may need ongoing support for all aspects of daily living.
Terms such as “profound autism,” “high functioning,” or “levels of autism” do not resolve this problem. They maintain systems of categorisation and segregation that prioritise some needs over others, without addressing the structural changes required to support all Autistic people.
Words That Wound: Why Functioning Labels Harm Autistic People
Further Reading
- Why functioning labels are damaging and irrelevant – Bristol Autism Support
- Disorder, Condition, or Disability: A Look at the Fables of Autism Labels » NeuroClastic
- Functioning Labels | AUsome Training | Autistic led Autism Training
- A Label on Functionality Labels – Just Keep Stimming
- Autism is fluid | Autistic Realms
- Autism functioning labels: What are they, what harm do they do and how can we change our language when speaking about autism? – Student Life
- Functioning Labels: Why you shouldn’t be using them (thanks a bunch, Terminology Dudes) – The Autistic Advocate
- (PDF) Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs
- Rejecting Asperger’s and other Functioning Labels – Stop ABA, Support Autistics
- The Problems with “High” and “Low” Functioning Labels
- Functioning Labels Harm Autistic People – Autistic Self Advocacy Network
