When my son was first diagnosed on the autism spectrum, I clung to the concept that it was no big deal—which it was “mild,” and he was “high functioning.”
He was going to be fine and this was not going to interrupt our lives because he was so smart and how could that happen?
But looking back, I now wonder—what does that mean? What is “high functioning autism (HFA)?”
Well, it’s not a medical term or recognized diagnosis from the DSM-5 manual, it’s just how some parents prefer to describe their children.
I guess it sounds better than “autism” or “low functioning autism” to some people but it’s really just a purple unicorn we use to avoid the truth—that our children have autism and it doesn’t matter how severe we tell people it is.
You would never know from looking at Ehan that he is on the spectrum. He doesn’t flap, his stimming is not as obvious, and he uses vocabulary well beyond his age.
It’s not until an unfamiliar sound sets him off or he gets anxious or angry about wanting to be in charge that anyone would start to realize something is off about him. That’s when he throws things, takes his shoes off, screams hits, bites, slams his body into walls, and starts cursing at me.
Sometimes it’s the F-word and sometimes he shouts incredibly scripted and detailed accounts from something he saw in a cartoon movie. Like the other day, when he yelled at me because I asked him to stay seated at PU.
Instead of telling me he needed to use the bathroom, he yelled,
“I’m going to get a spindle and you will prick your finger so that you never wake up again….and then I’m going to hit you and laugh at you until you cry,” followed by an evil laugh.
His face was red, fists clenched; this is usually when the stares begin in public.
Since my son is beautiful, funny, and smart people assume that my parenting is the problem. Strangers often think he is spoiled, needs discipline, or is a bad kid depending on how severe the meltdown is.
But he is just a kid with “HFA” and expressive language issues, I told myself.
A PU student that briefly worked with my child complained to me that Ehan was more difficult because he is “higher functioning” than the children she normally works with. She said that the “low functioning” kids would do anything for a cookie and responded easier to behavior interventions, but children like Ehan are exhausting to work with because he will need to change the reinforce or up the ante on a constant basis.
I remember taking a step back and thinking for the first time that this whole “HFA” label could be a bad thing.
My smart, beautiful, “high functioning” little boy is not welcomed anywhere and cries about wanting friends to play with while we basically live in isolation because many parents of his neurotypical peers do not understand.
ASD classification is helping all autistic children get the help they need and there is a lesson to be learned here—there is no such thing as “easier” autism.
Autism sucks regardless of where your child falls on the spectrum and these labels may feel comforting, but in the end, they don’t change anything about our children.
Sometimes, I think that autism itself is the purple unicorn since no two children on the spectrum are ever the same and trying to categorize them by type is like searching for a secondary-colored mythical creature that doesn’t exist.