The Problems with Functioning Labels
One of the biggest problems with functioning labels lies with the complexity of autism itself. The autism spectrum is not a linear, sliding scale. Some people may function well in certain areas and situations yet function poorly in others. For example, some who are “high-functioning” may be verbal and have above-average intelligence, but they also may have debilitating sensory processing issues, struggle to find employment, and have no friends due to social struggles. Alternatively, some who are “low-functioning” may be nonverbal and have an intellectual disability, but they may also be friends with everyone, have no trouble holding down a job, and experience sensory issues to a lesser degree. Sometimes skills and abilities can even vary based on situations; for instance, some become completely nonverbal during meltdowns.
Advocates argue that functioning labels can also have serious consequences for people across the spectrum. Those who are labeled “high-functioning” often have their struggles dismissed and needs ignored. People seem to think they’re “just not trying hard enough,” when in reality, they’re simply in need of accommodations, extra help, and support. Also, people labeled “high-functioning” sometimes claim their experiences get discounted because they “Don’t have ‘real’ autism,” when in reality, these people may struggle immensely in ways the public can’t see. In the wise words of Adam Walton, “Mild autism doesn’t mean one experiences autism mildly…it means YOU experience their autism mildly. You may not know how hard they’ve had to work to get to the level they are.”.
While people tend to expect far too much of those with the “high-functioning” label, they alternatively tend to expect far too little of those with the “low-functioning” label. These individuals are often underestimated. Sometimes they’re even demonized and seen as a burden! Though they can be capable of contributing to society and the world, their strengths and capabilities are often overlooked due to this label that has been placed on them. This is incredibly harmful and hurtful; no one wants to be overlooked or underestimated!
What’s the Solution?
While functioning labels are pretty problematic from both a practical and personal stance, we don’t have easy solutions to this predicament.
One option is to remove labels entirely and just call it “autism,” plain and simple. From there, we could choose to expand on a person’s unique strengths and weaknesses. That would be way more accurate and definitely more helpful to people on the spectrum. The problem with that is, “autism” is such a broad term that it could mean any number of things. And would we really want to rattle off the list of strengths and weaknesses to anyone who asks about it? That could get long and complicated. We humans love our shorthand terms and simplified ways of describing things.
So these terms are probably not going to vanish anytime soon, but there is something we can all do to help. We can actively work to recognize the limitations of functioning labels and remember they can be misleading. When speaking or writing about autism, I’ll often put labels in quotes or air quotes as if to say, “Well, that’s not completely accurate, but it’s the best I can do right now.” When explaining your child’s or your own autism severity, you might want to consider amending any labeling you do, explaining that it’s not entirely accurate.
And perhaps most importantly, we can remember to treat everyone with compassion and avoid making assumptions about one’s “functioning” level based on our brief interactions with them. Even a person who appears “normal” or is eloquent and well-spoken may have gone through more than we can imagine to get to that point; and even a person who is nonverbal and seems “not entirely there” while hand-flapping may have a way higher IQ than most and be destined for greatness. All in all, we should never underestimate what people with autism have to deal with…nor should we ever underestimate what they are capable of.Whizzco