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What About Functioning?

by Lydia Wayman

Posted on September 16, 2015
Yin yang

Person A is a young adult who has full-time services through a state autism program with goals to improve emotion regulation, safety and daily living skills, and vocational skills. Communication goals focus on recognizing sensory overload, frustration, and need for breaks or assistance. 

Person B was identified as gifted very early with an IQ in the “very superior” range. Parents noted rigidity, social disconnect, and severe food aversion, but diagnosis of ASD was delayed until late adolescence. Now a young adult, Person B holds an advanced degree and puts interests to practical use through self-employment while living independently with support from family and friends. 

How would you describe these two people and the gist of their needs?  You’d be looking for well-recognized terms describing skills, abilities, and supports required. Many people would pull out “high-functioning” and “low-functioning” as obvious go-to words.  

But what if I told you that Person A and Person B describe the same person, with five years between A and B. What if you wouldn’t see much of a difference if you were to meet her first at age 22 and then age 27? What if she had the same strengths, challenges, interests, and goals at both points in time?  I know she does, because both A and B are descriptions of me.

Functioning labels might be common and convenient, but that doesn’t make them a good choice for describing people.  If you stop to check under the hood, the language of “functioning” is coated in some shady, gunky, rancid stuff.  Don your gloves for a messy task… we’re going in!

“Functioning” is technically meaningless. The terms high- and low-functioning are common, but they aren’t defined in the DSM, leaving it up to each of us to define them ourselves. Do they refer to IQ? Verbal ability? Employment or independent living status? No matter how we define it, the concept is too simplified for real, whole, complex people who don’t fit neatly into boxes.  Take, for example, someone who is nonverbal but extremely bright, or somebody who scripts hundreds of movies but doesn’t say her own name.

Another thing to consider: Only a fraction of youth and young adults independently completed the survey discussed in The National Autism Indicators Report. The report says these people “tended to have higher functional abilities, better communication skills, and fewer services.” These are the people typically labeled high-functioning. But that’s a poor gauge for an overall level of functioning. Those without speech are often seen as incapable when their very capable minds are limited by motor challenges.  Do we ignore their abilities and focus entirely on their challenges? And many verbal adults lack the communication skills to access services, or they’re told their needs aren’t significant enough to qualify… until they fall to pieces.  Do we have to deem them incapable to provide them with support?

Many people have one foot in each label: If I were answering those survey questions with pen and paper, I’d need significant help—forms are the enemy of poor fine motor control and trouble with visual processing, and once I’m frustrated, it’s a downward spiral.  But if I can manage my own sensory surroundings, take breaks, and answer by touch screen, I’d breeze through on my own.  Same brain, same autism, same person—opposite different ends of the independence continuum because of one hidden variable.

Functioning doesn’t come in uniform levels.  Functioning is not a constant—it changes from year to year, season to season, setting to setting.  These days, I’m fairly capable at home when things go as expected, which is very different than the years of daily meltdowns, years on medications, and throwing things in frustration. Even now, I’m sensitive to sensory overload and too many social demands, so I have gotten a shocked, “You have autism?” and a compliment on my “pretty coloring inside the lines” on the same day!  I may not fit in a box, but I do have strengths and weaknesses that are affected by other variables… just like everybody else! 

Functioning labels are not justifications. The words are only half the problem; the judgment loaded into these labels is powerful stuff.  When I hear about a student who is too “high-functioning” to be struggling, I hear the teachers who said that I was “smart enough to know better!” Twenty years later, I’m still asking… know what? It’s no better than when “low-functioning” is used as a reason to deny services or even rights, like the time I reported a support staff for spilling far too many beans about my journey, only to be told that my autism prevented me from understanding what I overheard.

Some years ago, autistic activist Laura Tisoncik said it best: “The difference between high-functioning autism and low functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored.”

Functioning labels create false comparisons. Functioning labels don’t communicate facts about us so much as they measure us against “normal.” I have goals, but they aren’t usually the same things my peers are after, so it isn’t helpful to hold my best up to their very different best and use it to make guesses about my future. In some areas, my peers would appear to fall short compared to my best, too.

I don’t know what the label would be, but I function at my best when I work toward goals with people who never force me forward.  They believe in my ability to continue to make progress – that I should have the loudest voice in deciding when I’m ready to do something new and take that leap…

Sometimes I flop… but sometimes I fly, above the charts and beyond the measures.  A functioning autistic person—a functioning person—is one who is proud of herself for trying something new, who thanks the people who support her, and no matter how gracefully she lands, she stands up tall, takes a deep breath, and asks how she can continue to reach for her goals.

Lydia WaymanLydia Wayman, M.A., is an autistic advocate with a B.S. in elementary education and M.A. in English and nonfiction writing. She blogs at Autism Speaks and contributes to other websites, magazines, and anthologies. Lydia manages the digital media for a local autism nonprofit and enjoys presenting at local and national events and serving as a Young Leader with the Autistic Global Initiative.

The views expressed in this blog are the author's own and not necessarily those of the Life Course Outcomes Research Program.