It's time to Ditch Functioning Labels and Focus on Support
Neurodivergent folks are often described as "high-functioning autistic" or "low-functioning autistic," a limiting label that follows them around and impacts their academic journey. The problem is that the difference between these labels, in most cases, is based upon the personal perspectives of a parent, practitioner, or educator—causing miscommunication and confusion because neither one describes the level of ability or function across multiple categories, including social awareness, executive functioning, sensory processing, etc.
We had the incredible opportunity to speak with Sydney Edmond (labeled as high-functioning) and Aaron Saenz (labeled as low-functioning) who were kind enough to share their experience on how labels impacted their lives and what it meant for them to move through the world—especially the education system with high- and low-functioning labels.
How did functioning labels make an impact on you?
Sydney - Labels are often proven to be wrong, and so often lead away from the support autistics need. They are lousy for the self-esteem of autistics. I think my early (low-functioning) label loaded doctors and people at school with a lack of willingness to help me, and at that time I was not given the tactile support I needed to be successful in the classroom.
Aaron- My functioning label has caused people, my parents, in particular, to overlook me in areas where I needed support.
What would you like others to know about labels and how they affect those on the spectrum?
Sydney - I would like others to know that labels can cause inaccurate perceptions of those on the spectrum. Those considered "low-functioning" will be constantly under-estimated and never given a chance to live up to their true potential, and those considered "high-functioning" will be overestimated in their mental and emotional stability and be considered above and not needing of specific needs and assistance.
Aaron - I want them to stop looking at our outward appearances and behaviors and making judgments based on that. I want them instead to look for areas that need support so we can be successful and lead a fulfilling and enriching life. We all need support in our lives. Not just autistics. All of us.
Do you have advice for parents of those on the spectrum after receiving a label?
Sydney - Don’t allow labels to stop you from reaching for your child’s goals and dreams. Look for ways that challenges can be addressed and supported to achieve success.
Aaron - I want those, and parents of those, on the spectrum who have received a label to disregard it entirely. They deserve time and space to discover what they're truly capable of and where they need extra help and understanding.
What would you like to see be done instead of labeling?
Sydney - Instead, look for areas that need to be strengthened or supported to meet
their needs. Above all, to have a thorough means to communicate.
Aaron - Instead of "high" and "low-functioning", I would like, with the consent of the person on the spectrum, a categorization of symptoms, behaviors, and co-morbidities to pinpoint the different areas where someone fits and doesn't fit on the spectrum. A detailed yet straightforward list of what they have/don't have and what they can/can't do rather than a straight line that determines how well they fit into neurotypical society.
Let’s continue to view the autism spectrum for what it is—a spectrum. Neuroclastic has developed this helpful diagram for us to visually process the spectrum.
Social Cipher embraces, celebrates and supports the neurodiverse community standing to support, uplift, and empower all neurodivergent folks. We understand that functioning labels are still widely used with autistic individuals. We want to encourage communicating with autistic folks and identifying the areas that need to be strengthened and supported to meet their needs rather than tagging them with a label!
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