High-Functioning is Hard Too

Often when people hear that I have children with special needs, one of the first questions they will ask is “So, are they high-functioning?” I love when people ask me questions about my children. I appreciate the brave soul who looks past our strangeness and instead of fleeing or ignoring, has the fortitude to try to understand us. So muchas gracias, people with questions!

High-functioning sounds like a positive, so my guess is that we see it as a silver lining to a difficult situation. It’s also a term that many of us hear frequently in association with people who have disabilities, so we feel comfortable tossing it around. Maybe, in fairness, some folks don’t know what to say. So they look on the bright side and ask this, because it feels like something good which they hope applies to us.

An acquaintance I saw at the zoo once asked me this about my now nine-year-old (who dwells far, far away from the land of high functionality). Jack was in nuclear meltdown mode, screaming and tantruming on the ground because the full-to-capacity zoo train had left the station without us. Our conversation went something like this:

Me: Good to see you! This is my two-year-old, who has a rare syndrome and also autism.
Her: Okay, got it. So is he high-functioning? 

I remember gazing at my flailing, bellowing red-headed toddler, splotchy from kicking up a mad stink in the line for the zoo express on that overcast fall day. I didn’t even know how to respond. One possibility I wish I had thought of in the moment: “If by high-functioning, you mean unable to tolerate disappointment, wait our turn, or communicate effectively, then yup, we have totally nailed it.”

I hate to be the dark looming thunderhead in this situation, but I am about to rain on this parade. High-functioning doesn’t mean easier. I know, because I have two children with special needs, one at each end of the spectrum.

High-functioning simply means you have a different kind of hard.

In some ways, high-functioning is actually harder because people expect more from a kid who appears pretty much “normal.” When people see my obviously mentally-impaired son, they don’t expect the same things of him as they would from a typically-developing kid.

For me, it means that my high-functioning kid is able to join in a typical preschool and a Sunday school class, and play with neighborhood friends, but will act completely inappropriate for his age at times when he is anxious or afraid. It means he is not fully potty-trained at age five, and doesn’t care to be. It means we have loud public meltdowns about shopping at Costco or sharing toys.

High-functioning means that some of the time you look the part of a regular kid, but much of the time you are acting very much like a person with special needs.

For a parent, it’s not easier. It’s just different. It’s an unexpected, challenging ball game, whose rules I don’t understand.

And that’s all I have to say about that.

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