The fallacy of high and low-functioning autism

low and high functioning autism

By Tom Iland

I received some questions this morning from a mother whose son with autism didn’t want to be called “high-functioning” and suggested she use another term.

She asked me if I’ve ever felt this way – is it possible many kids feel this way and we don’t know it? and what other terms can she use to describe her son? I gave her the following response and I hope you will share it in an effort to remove harmful labels like “low-functioning” and “high-functioning” from our young people:

“Thank you for your questions. They’re relevant and do come up in the autism community more often than not and here’s why.

As you know, autism is a spectrum disorder and sometimes people associate one end of the spectrum as “high-functioning” and the other as “low-functioning.” This is somewhat offensive and risky for a number of reasons including but not limited to:

Using the term “high-functioning” discounts or dismisses the person’s needs or struggles. Plus, they may not see themselves as “high-functioning” when inside they feel like they’ve failed with respect to their needs and struggles. Furthermore, telling someone they’re “high-functioning” may cause them to resist help or feel like they don’t need it at all when really they could use some help.

Using the term “low-functioning” discounts or dismisses a person’s strengths and capabilities. It’s both shocking and disturbing how many people call their child this term IN FRONT OF THE CHILD. Then, the child becomes depressed and is rendered powerless (also known as “learned helplessness”). This results in a self-fulfilling prophecy when parents or others say things along the lines of “My son/daughter will never live on his/her own” and then years later, that’s exactly what happens. Underestimating a child’s potential hurts BOTH the child and the adult(s) that made the terrible assumption.

I had been deemed “high-functioning” and when I started college, I thought I was on my own, that I had to be completely independent and that I didn’t need nor have to ask for help. It turns out that asking for accommodations for tests in college, seeking help on improving my reading comprehension and getting assistance when I needed it would improve my college and overall adult experience. I realized it was OK to need help and ask for it and that I wasn’t stupid if I did so…I was stupid if I DIDN’T ask questions or seek clarification. Heck, even Einstein (who is believed to have had autism) asked questions!

As for another term for high-functioning, I suggest, just to name a few:

-Gifted
-Unique
-Capable
-Mature
-Insightful

I say that last one “insightful” because I get the sense that he may sense that your words might offend others more than they offend him. He may also be very humble…not taking (or giving?) compliments or praise and might be embarrassed when his strengths and/or opportunities for improvement are pointed out.

I hope this information wasn’t too much and is helpful to you and your son. I’m happy to answer other questions you may have.”

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Tom Iland
Tom Iland’s achievements include graduating from Cal State University Northridge, becoming a Certified Public Accountant, and working in corporate America. Tom is now pursuing a professional career as a speaker and trainer sharing insights and practical advice with the Autism community. His new book Come to Life: A Guide to Transition to Adulthood (co-authored with Emily Iland) will be released this November. Tom is a Board member for the Art of Autism nonprofit. to find out more about Tom visit his website – www.thomasiland.com. Tom’s new book ‘Come to Life! Your Guide to Self-Discovery’ (co-authored with Emily Iland) is now available to the public!

 

3 Comments

  • I fully agree! I don’t use “high functioning”, “low functioning”, or “functions at the age level of x” either. I too find that “function levels” fluctuate, and are based on a neuronormative model that is inherently ableist. I prefer the term support needs, as these too can change, but refer to what I need at the time.

  • Very well written Tom. I agree with all of this. Also, I feel that high functioning versus low functioning is not a visible thing that can be observed by others or anyone other than the person on the spectrum. To me high or low functioning is about how I feel I function and not how I appear to function to others. People always assume I am high functioning because I am smart and highly verbal and they don’t understand the social challenges I encounter. So for me I am the only one who can decide at what level I feel I function.

    The other thing that comes to mind for me is the over-generalization of this. Meaning somehow society has created definitions for what it deems is high functioning and low functioning. Usually people think of high functioning as highly verbal kids and low functioning as non-verbal kids. Because of these clear cut definitions when you say someone is high functioning you are saying they are this and when you say they are low functioning you are saying they are this. The reality is contextually speaking they are probably somewhere inbetween the two sides of those definitions.

    Very well written article Tom. I enjoyed.

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