The ROYGBV of Autism: Replacing High or Low Functioning
You can’t paint a rainbow with just two colors.
So why do we try to “paint” the autistic community that way?
High OR low functioning is a myth that we like to tell ourselves because we crave simplicity. They are categories that we turn to in our attempts to understand a disability with such wide-ranging effects on human bodies, minds, and relationships.
Not to mention, that for many on the spectrum and their families an extremely nuanced health journey becomes simultaneously extremely intimate and unavoidably public.
We are a society that values other’s comfort levels above our own and that strives to achieve “normal” status. From our youngest years trying to get decent grades and participate in extracurriculars to becoming an adult, the opinions of others too often define us.
In our other July 2021 article, we discussed the impact of self-advocates and caretakers choosing the language to discuss an ASD diagnosis.You can check that out by clicking here.
This is a step deeper.
Autism is part of one’s identity just as much as their race, gender, sexuality, and upbringing. That does not change. However, “sorting” people into terms that either undervalue their abilities (low functioning) or hold them to normative standards (high functioning) undermines our communities gol to affirm and validate autism as normal.
“Low Functioning” as Gradients of Worth
Labeling an individual as “low functioning” denotes that they are both incapable and unacceptable to be in public. Caretaking parents and siblings are expected to bear the brunt of the “low” end of the spectrum. They become either martyrs to be praised or pariahs to be avoided.
A hyper focus on how someone is struggling, rather than how we can support them is a failing we can no longer afford to sustain in Autism awareness, health care, and education.
Thankfully, methods like Applied Behavior Analysis (ABA) are centered on the individual, but this is a particular subject where the metrics we use can only go so far to treating the entirety of human emotion and psyche. Symptoms and behaviors need to be addressed without condemning people to stigmatized labels.
Allowing those around you, family members, friends, unaware educators, and strangers alike to measure or gradient your autistic loved one based on limited interactions does not acknowledge the progress that they are capable of. Especially, when they have been labeled “low functioning.”
By using this label we allow others to believe that our autistic loved ones have little to no “societal worth” because they are not “functioning” members of society. Instead, we need to pivot expectations.
Why live trapped in moments of societal failure when we can celebrate moments like this when Micah, a non verbal child, says his name for the first time? Or perhaps indulge in creative solutions for our autistic loved ones to communicate like Harrison’s parents who allow him to draw on the walls?
Labeling someone “low function” only tells the world that you are unable to adapt to autism not that those with autism are failures for not adapting to society.
“High Functioning” as Passing For Normative
On the other extreme, this label almost villainizes the autistic individual for their conformity to normative ideals.
Much like the racial and LGBTQ+ versions of “passing” for white or straight, labeling someone as “high functioning” can cause a lot of pain. That title tells them that they are an acceptable level of autistic that can “contribute to society” but not normal enough to be fully acceptable.
With the assumption that someone is “high functioning” comes a lack of resources and the potential for willful ignorance about how they perceive the world. Overstimulation, social awkwardness, and developmental struggles still need to be supported even when their symptoms are more mild.
What it comes down to is “expectations.”
The world around a person labeled “high functioning” expects a certain level of “normal” that is ambiguous, if not performative. The person then expects more from themselves than they are sometimes able to give. Namely, etiquette for the comfort of others.
This ignores the entire autism advocacy movement’s goal of normalizing calming actions like stimming and the diverse manifestations of social awkwardness.
Because we have a positive connotation of being “high functioning” we struggle to take into account how it impacts the self-respect and confidence of the broad spectrum of people who fit under this faulty label.
When we turn the expectation from “act normal” to “be yourself” that’s when we know we are on the right track. Megan Rickards, a high functioning autistic writer describes it as just trying to find her place in this chaotic world. She writes “I will continue to live unapologetically and have the confidence in myself to chase my dreams, no matter how crazy they may seem at times.”
How Labeling Impacts Education
This misrepresentation of “high functioning” as “nearly normal” and “low functioning” as hopeless contributes to the delaying of needed diagnoses. The stigma that they create encourages parents of “high functioning” children to dismiss their needs and parents of “low functioning” children to infantilize them.
We are causing undue stress about how achieving “normal” goals may or may not be possible. In this way, we accidentally promote stagnation rather than progress in all realms of life.
Without creative and personalized solutions to the unique obstacles that autistic individuals face, there will be no forward movement.
There has been nothing in recent history that has proven this point more than the digital learning divide.
That’s why from diagnosis to treatment our Intercare process and dedication to ABA therapy sticks out. Not only do we individualize programs, but we also understand the true benefits of ongoing evaluation.
If we want to garner the respect and understanding that we are seeking, then we need to function as a community to abolish the widespread use of these labels in the wider world.
The ultimate issue with sorting individuals with autism into “high and low functioning” titles like Hogwarts houses is that we assume a mindset that one can “grow out of” or “recover from” being autistic.
We need to step away from the unhealthy mindset that one’s ultimate goal is to “recover” from Autism. We can work together through ABA techniques to mitigate harmful and disruptive symptoms, but there is no “leaving it behind.”
One can no more recover from being white or hispanic, gay or straight than they can being autistic. When we ignore this fact in favor of “normativity,” then we continue to entrench ourselves in this false dichotomy.
Instead, we should be focusing on the beauty inherent in Autism’s vibrant spectrum.
A rainbow, after all, is not simply red, orange, yellow, green, blue, and violet, but every shade of each color therein.
For more on this topic we urge you to read the Autistic Self Advocacy Network’s “Position Statement” that covers many of the questions you may feel rude asking those in the autistic community.
For more information about Intercare: https://www.intercaretherapy.com/