Why High & Low Functioning Labels are Harmful
Another Disabled Perspective
From an outsider's perspective, functioning labels describe autistic individuals. Many advocates have been coming forward and proclaiming that functioning labels are harmful. These individuals who assert this are not just autistic.
I am a neurodivergent content creator. For me, being neurodivergent means that I have Attention Deficit-Hyperactivity Disorder. I have high emotional support needs and some cognitive difficulty, which has always been the case. I was labeled high functioning as a kid. The definition of high functioning is being able to function mentally or physically at a higher level than others with the same condition. That is the first definition you find on a google search.
You would not look at me and immediately think I have as high emotional support needs as I do. I can physically accomplish tasks just fine. But I have, for almost my entire life, had significant emotional health problems at a debilitating level. I have also always struggled in school to some degree. I gratefully received a diagnosis and accommodations at a very young age because my parents fought for it. I had the unfortunate circumstance of living in what was considered a medical desert throughout my growing years. After a certain point in my schooling years, the help I could get was limited.
As a kid, I remember coping with my problems through hobbies. Once I hit adulthood, the high-functioning mask started to disintegrate as my anxiety and depression worsened. It was easy for many educators at the time to dismiss my problems because you could not see that anything was wrong unless I was having a bad day. The recovery from that day can last for more than a night.
For example, I would have a bad day at a job. As a result, I would have a mental health episode. The reality is that I am still looking for the right combination of treatments. Sometimes it means I need to take time off to recover from an episode because my mental functioning is gone. That is not realistic if you have other responsibilities. The problem is that you can push through as much as you want, but there will always be a cost.
I get that the words high and low functioning have their place, but there is a point that you have to consider that support needs are more complicated than that. We need awareness of who has physical support needs versus other types. We cannot think of one as less important just because the person can bathe themselves.
Many people still do not receive the treatment they need because of this and other harmful stereotypes. Because of red tape, some people wait for years and spend thousands of dollars to find answers that help them succeed and level the playing field. I love watching medical shows that shed light on this because this movement needs the limelight. My favorite show to watch, though it rips my heart out sometimes, is New Amsterdam. While it is a drama, it perfectly shows this idea of how red tape becomes a problem in seeking treatment.
The main character, Max Goodwin, is shown as a socialist type in how he runs the New Amsterdam hospital. He believes that receiving the care you need and want should not be as hard as it is. This character believes in patient-centered care. The NEJM group defines patient-centered care as focusing on the patient's problem rather than their diagnosis. That should be a common-sense route, but you often hear stories of how little this is the case. You should not need to come to the hospital unless you have to. Where is preventative care in that conversation?
As someone born and raised in a medical desert, I never thought this could be real. I did have a doctor growing up whom I can see is an example of this principle. She is a nurse practitioner and a close family friend. My parents have trusted her for a long time. I remember seeing her when I was younger, and she would focus more on the immediate problem than anything else.
While the labels of high and low functioning describe one type of functioning, they are harmful because they give others an excuse to dismiss problems. That has all been from my own experience and research.