What’s Your Stance? : The Ongoing Debate of Functioning Labels
Throughout other opinion based or medical articles about disability or even within everyday jargon, you may hear words used to describe the level of severity of someone’s disability, such as “high-functioning” or “low-functioning”. These labels are called “functioning labels” and they are especially present within the context of describing someone with autism. Functioning labels are often used by people who are not autistic, such as parents, family members, and medical professionals, to describe someone else’s abilities as a person on the autism spectrum. Some common characteristics of people with autism who are labelled as “low-functioning" are an inability to communicate effectively or immense difficulty completing “everyday tasks”, such as brushing their teeth, putting on their clothes, etc. In opposition, those who are categorized as “high-functioning” are able to manage everyday tasks with little to no difficulty and obtain some form of independence; some are even able to pass as able-bodied.
More often than not, parents with a child with autism are noted to use functioning labels more often in order to convey to others their unique parental experience given the extremity of their child’s disability. Validated in their experiences and trial and errors, the article “The Autism Acceptance Hoax” based upon the life of Rosanna and ultimately illustrates the often disheveled, yet gracious circumstances that accompany being the parent of a child with autism. The experiences and emotions Rosanna, a parent of an autistic child, faces and battles on a daily basis are specific to her child’s strengths and weaknesses. In the article “The Autism Acceptance Hoax”, Armediaz bluntly states the facts of her situation by introducing herself as an “autistic adult and the parent of an 11 year-old son with moderate-severe autism and significant learning delays” (Armendiaz, 1). Given the severity of her child’s autism, Armediaz is often oppressed with the overrepresentation of individuals with autism who are “high functioning” and “successful”. “... [T]he 6 year-old regional chess champion, the 10 year-old science fair winner, the tech wizard in Silicon Valley… [or the] whiz at math” are all examples showcasing the attributions of children with autism, but these stories leave no room for representation for children like Armediaz’s son. Armediaz states that “If autism can be rebranded as not a serious disability but “a different ability” or even a “super power,” as teen climate activist Greta Thunberg asserts, then the perceived need for support is greatly diminished. Ultimately, I believe it’s all about the bottom line: think of the money we can save by de-funding critical disability services and programs and celebrating “inclusion” and “rights” instead” (Armendiaz, 1). Armendiaz’s critique of such rebranding strategies in order to promote “autism [as] just a difference instead of an incapacitating disability” stems for a place of unrest over her child’s future. Given Armendiaz's experience growing up as a child with autism and now an adult, she knows all too well the struggles that are in store for her child and his future. Armendiaz depicts her son as “not at the most extreme severe end of the spectrum, but nevertheless unlikely to replicate my meager accomplishments. At 11 years old he still requires assistance with basic daily tasks like bathing, teeth brushing, and dressing” (Armendiaz, 1). Some may argue that Armendiaz’s attitude regarding her son’s capabilities is more debilitating than his disability, but the increased unrest that a parent experiences over their autistic child’s well-being is reflective of their “realistic” analysis of society’s growth, as well of their child’s. In Rosana’s case, it’s important to understand that when certain words or labels are deemed as controversial, we must acknowledge both sides. Even as a person with autism herself, Rosana has no problem using functioning labels to describe her son and the severity of his autism. In doing so, she feels she is able to explain to others his condition and the limitations it presents to him better, while also advocating for more representation of children and adults like him.
While Rosanna is one example of how functioning labels aid in describing the unique experiences that parents have with children who have autism, Ollibean reminds us of the harmful hierarchy that can evolve when parents with “high functioning” autistic children play too much into labeling. In the article, “More Problems With Functioning Labels” by Olliebean, it argues that “Some children who grow up hearing that they are “so high-functioning” [may] believe that they are better than other autistics. Not only this is something impossible to measure, it also means a member of a minority group stigmatizing other members of the same group. But the worst is when parents insist on using “high-functioning” for their children to elevate their status among other autistics. Besides being disrespectful of our accomplishments and our resolve to succeed against many odds, it is disrespectful of their own children’s existence. It is like saying that they love and believe in their children because they are not like “those very low-functioning, pitiful ones”. It disrespects their own children’s right to experience a perceived high need, not dignified of a “high-functioning” autistic. It disrespects their challenges and their hard work to succeed. Using “high-functioning” is a need of a parent’s affirmation, not an autistic child’s choice, and it does not show acceptance” (Olliebean, “More Problems With Functioning Labels”). Many people with autism believe that using functioning labels is harmful and creates a false narrative, specifically about “high-functioning” autistics. Jessica Flynn, an eighteen year old autistic writer, poet, caregiver, life mentor, and disability advocate, shares her take on functioning labels, considering her personal experiences. She explains “Commonly, when you hear someone say they know someone who is on the autism spectrum, you immediately hear them continue the topic with one of the following: “Oh, but he’s high-functioning.” “She’s on the other side of the spectrum.” I get it, it’s been common terminology for a long time...but now’s the time to learn and change the use of functioning labels for our autistic friends, family, and community. When you call an individual high-functioning, it can be used in a way to diminish their struggles, or suggest we don’t have it as hard as typically considered “low-functioning” autistics. I went to a typical high school and wasn’t in any special education classes after grade school. I can communicate verbally (most of the time), I’ve been working for years as a caregiver for other people with disabilities. I am now in college. Therefore, it may seem like I...might not struggle as much as people with autism on other sides of the spectrum. But you don’t see the times when I am that person on the “other side.” When I am uncomfortable and around new people, I lose the ability to speak and become nonverbal. I rarely go anywhere alone because I’m afraid of people, of having a shutdown and sitting on the floor of a store. If I’m in sensory overload, I hit myself, scratch myself, scream and pull my hair. And those are just some of my common problems from being autistic. I definitely wouldn’t be considered “high-functioning” if people saw those sides of me” (Flynn, “Why Autism Functioning Labels Are Harmful -- and What to Say Instead”). While Jessica may be able to conceal her disability and appear as able-bodies to the “outside world”, even as someone who has been repeatedly labelled as or assumed to be “high functioning”, she has her own set of struggles too. As a caregiver, Jessica has been able to work with people who would be considered “low functioning autistics” and she stresses the importance of recognizing their intelligence and “awesomeness”, instead of using labels, which ultimately strip their humanity.
When it comes to the debate of functioning labels, another major problem that I’ve seen is the unfair allocation of resources and services based upon loaded assumptions of “who’s deserving” in the autism community. Oftentimes, “high functioning” people with autism are viewed as not needing resources due to the false pretense that they’re independent and intelligent enough to no longer be dependent on such services. Advocating and receiving quality services and supports is already hard enough as a disabled person, but once labels come into the mix, that can add an additional barrier. As a person with a disability, support can be the difference between an accessible and inaccessible world.
I’m curious to know, from our parents and guardians:
How do you feel about functioning labels?
Do you describe your loved ones using them and why/ why not?
Do you think functioning labels serve a purpose for your loved ones or are they simply for you?
For those who identify as being autistic or having a disability:
How do you feel about functioning labels?
Has anyone ever referred to them to describe the spectrum of your disability?
What is your argument for or against them?
*Please feel free to engage in this conversation freely and be respectful of others' varying viewpoints in order to make this a safe space for everyone*