Please Don't Ask If My Son Is 'High-Functioning'

My 4-year-old son is on the autism spectrum.  The way autism is categorized and described today is controversial to some, but I believe it’s better than the previous method of using functioning labels. When people ask if my son is high-functioning, I just want to scream.

When you use the labels high- or low-functioning, you completely ignore the individual’s strengths and weaknesses.  As a parent I try to focus on the positives, however, I also try to be honest and real about the challenges.

If you ask, know this:

• My boy is bright and curious
• He can be very verbal; using words to communicate,  but he can also have extended periods of nonverbal communication where we have to try and guess what he needs from gestures and sounds.
• His sensory processing difficulties are severe. There are few places we can go outside of the house, and when we do, we almost always need to decompress for days.
• His anxiety is also severe; trying to understand the triggers for a 4-year-old who is often nonverbal is often exhausting, upsetting and inaccurate.

When we use the labels high- or low-functioning, we are referring to what we think a person can do, but what we see on the outside is not the same as what they are capable of internally. And for people who appear to be highly capable at times, we fail to recognize the internal or invisible struggles they face.

When we consider people with autism, we need to recognize we don’t have the complete picture. I cannot be completely sure of what my child is struggling with, but I do know for sure he is struggling. I deal with the unending, exhausting process of persuading others to recognize my son’s challenges and provide support, be understanding or include/change behavior in response to his needs. As a society, our ability to empathize seems to be eroding, which is creating many difficulties for neurodiverse people.

I cannot speak for all carers, only for my family. But please don’t ask if he is high-functioning. Ask instead how he is coping, how are we impacted, what could be done to help him or us. Don’t assume incompetence, but please don’t assume the struggle is not significant. It is.