I’m Not High Functioning

My name is Angel and this is my autistic confession.

I am not “high functioning.”

Ever since I was first diagnosed with autism, I’ve been told by random people that I am high functioning. After five minutes of knowing me, they are ready to declare, “You must be so high functioning!”

This makes me cringe.

Most “actually autistic” adults hate functioning labels. Functioning labels attempt to bunch together every aspect of a person’s life into one blob, and then give that blob a rating. Functioning labels also only focus on the areas that neurotypical society has deemed as important. For example, an autistic person who can design a complicated computer program, but is nonverbal and cannot do certain tasks such as grocery shopping for themselves, might be labeled as “low functioning.” Even if they can support themselves by designing computer programs, and are responsible for hiring their own support staff, their level of functioning would be based on all of the things they cannot do, that a neurotypical adult would be expected to do.

Meanwhile, a person who can speak, has a driver’s license, and works outside their home will often have a lot of trouble getting support for the things they do struggle with, because they are able to blend in with neurotypical people at least some of the time.

And while “You’re so high functioning” might be meant as a compliment by the people saying it, it rarely makes me feel proud. I’m never sure what to say. Thanks?

I came up with this analogy to explain why calling me “high functioning” is not only uncomfortable but inaccurate.

Imagine that two people get thrown off of the side of a boat in the middle of Lake Michigan.

The first person immediately begins to swim, and with just a little effort they are able to make it all the way back to shore.

The second person thrashes wildly, struggling to keep their head above water. They’re coughing, sputtering, gasping for breath, and swallowing a lot of water. They’re certain they will drown, but by sheer will they manage to keep on fighting for their life.

Finally, the drowning person manages to grab ahold of some little handle on the side of the boat, and they cling to it for dear life as it heads back to shore.

The person arrives at shore safely. But they are bruised and battered, crying, throwing up water, shivering, and possibly becoming hypothermic. An onlooker remarks, “Wow, you made it back to shore! You must be such a strong swimmer!”

The first person was a strong swimmer. Getting back to shore required some effort, but they had the strength, stamina, and swimming skills to save themselves. It was something they were entirely capable of doing.

The second person was not a strong swimmer at all. They managed not to drown and found a way to get back to shore, but it almost killed them. They may have fared better than, say, a person with no arms or legs who couldn’t even thrash around in the water. But they are definitely not a strong swimmer.

Instead of using functioning labels… such as assuming that every disabled person who has managed to survive and somewhat meet society’s expectations is “high functioning” or a strong swimmer… we should realize that each autistic or otherwise disabled person we meet has a unique combination of things they excel at, things they are able to do with some support, and things that they really need a lot of assistance with. We can admire a person’s achievements such as being able to design computer programs, create works of art, cook delicious meals, provide excellent care for animals, etc. We can also realize that things that can be done almost effortlessly by most neurotypical people, may be a huge achievement for an autistic or otherwise disabled person. In addition, we can recognize that there are some things an individual may not be able to do at all, at least at this moment. We can provide help in the areas where a person needs it, without dismissing the whole person as “low functioning.”

Remember that just because someone manages not to drown, that doesn’t mean you should throw them off the boat without a life jacket again. Just because someone swims effortlessly to shore, that doesn’t mean they don’t require support in other areas. And just because someone immediately sinks to the bottom of the lake, that doesn’t mean they need continuous support in every area of their life!

Instead of saying, “Angel is a high functioning autistic person,” you could say, “Angel’s needs are not always obvious,” or “Angel is a good writer, and is very kind to animals, but struggles with managing her apartment independently.”

Do you see the difference?