Jackie Schuld Art Therapy Blog

How “Low” and “High” Autism Labels are Misleading

Autism is a very broad category. The DSM-5 defines Autism Spectrum Disorder (ASD) with a wide range of criteria. A neurodivergent lens describes autism as a brain that fires more frequently, rapidly, and in conjunction with other neural pathways than neurotypical brains. The internal impacts of this neurotype can vary widely, as well as the external behaviors expressed by an autistic individual. Furthermore, intelligence level and co-occurring “disorders” (such as dysgraphia, dyslexia, ADHD, etc.) influence an autistic indvidual’s experience. As a result, autistic people are capable of varying levels of independence, self-sufficiency, masking, and camouflaging.


Individuals frequently want ways to quickly separate and label autistics who are more capable of independence, self-sufficiency, and appropriate functioning in a neurotypical world.


In the past, the term “Aspergers” frequently referred to this group. After the DSM-5 removed this label, individuals struggled to find new ways of describing differences. The lay terms of “high” and “low” functioning were developed. With time, it was recognized that these terms were not very considerate of the humanity of people.


The newest versions I’ve heard include “high” and “low” support needs. An individual who is not independent would likely be labeled as “high” support needs. Someone like myself would be labeled as “low” support needs.


I think these labels are misleading though. Just because an autistic person is independent and able to externally control their behaviors does not mean their support needs are low. They may be internally suffering a great deal and still need a great deal of internal support to not slip into depression or anxiety.


Furthermore, an autistic person's capabilities may not remain consistent across time. An autistic person may be capable of living independently and supporting themselves, but I see their self-sufficiency as more of a reservoir. When autistic individuals are stuffed into harmful neurotypical jobs and environments, their energy can be depleted over time. They may go home and experience autistic shut down, where they need to isolate from all people and incoming information in order to restore balance. If this is experienced for too long of a period, it may lead to autsitic burnout, where an individual is not capable of continuing their current structure of life. This can comprise their ability to support themselves.


Autistic art therapist Jackie Schuld shares a page from her journal that contains a self portrait made with continuous line drawing
Journal entry and self-portrait from when I was in a low-reservoir period

My reservoir has shifted throughout my life, depending on my external circumstances. I myself reached a moment of autistic burnout when my life was not meeting my autistic needs. My reservoir was drained and I could not continue as it was. I needed the support of family, friends, therapists, coaches, and paid programs to restructure my business and my life.


Now that I’ve done that, my reservoir is quite high and I’m capable of far more than I used ot be.


How could a “low” and “high” label capture the complexity of this lived experience? I don’t have an alternative label to offer, for I have not found one that feels sufficient. In the meantime, I typically default to using multiple descriptors at once: autistic individuals who have normal to high intelligence, are capable of independence, and can externally mask and camouflage to fit neurotypical expectations.

 

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