Sunday, January 26, 2014

Autistic Enough? Thoughts on Functioning Labels

Ever since Morgan was diagnosed, I've come across this attitude from some parents, teachers, and other people of him not being "autistic enough" because he now speaks. Or, the fallback response of "but he seems so high functioning!" from pretty much everyone.

I feel, sometimes, as if it says, "Oh, he's autistic, but just a smidgen. You got lucky!"

I don't think that anyone means harm by this. But by saying my son is so high functioning, a term that really does nothing to describe him in any way, negates most of the struggles he has, I think.

It negates that he would rather spend time with his trains than people. And can recognize a train before a person. And hold a conversation about a train easier than he can hold a conversation with a person about his day.

It negates the hours of therapy, work, and the difficulties he still has with understanding the world outside his cocoon. Or even the cocoon itself.

It negates the several pages long IEP he has with accommodations that I've fought hard to get for him in the last few years.

It negates the fact that he still, at age nine, cannot tie his shoes, needs multiple prompts and help for hygienic issues, and dressing himself properly.

It negates that, even though he can Google "Bachmann Thomas," he's reading below grade level and needs quite a bit of help in most areas of academia.

It negates his bolting and eloping into traffic on occasion, which is scary as hell.

It negates him giving out his newly acquired personal information to perfect strangers and inviting them over. While we're in New Orleans. In bathrooms.

That's where my mind goes when I hear "high functioning" when addressed toward my son, whom I never let out of my sight.

The term "high functioning," as one of my autism mom friends put it to me, indicates that "they don't really know what your kid has been through, where they're coming from, and now they're slapping a random label on your kid because that kid can read a bit, write some- with help, and talk. Oh, and can convey thought? Yeah, makes perfect sense!" She and I agree that while it shouldn't feel like a slap in the face, it does. Like Morgan, her daughter speaks in scripts a lot of the time. Our two children are fairly different, but very much alike.

When I'm around some of my other autism moms with their children who have been labeled "low functioning or moderately functioning," I feel guilt. Those moms don't treat me any differently because of my child's label, and none of us really discuss those labels, but for me, those labels are hanging over our heads, like a thought bubble.

I want to burst that bubble with a pin. Our kids parallel play next to each other and are usually fine.

But still, I feel as though I must justify Morgan's autism in some way. My friends never ask me to or make me feel like I'm being put on trial like others do- they have great "A-dar." They see him bouncing, flapping, hear him scripting, note the lack of eye contact, etc. I just think that they're surprised when he hugs (which is nearly a stim for him) or wants to kiss them.

Then there's me. Am I autistic enough? The DSM-5 and my doctor think so. My husband and the majority of my friends who have spent significant amounts of time with me think so. Yet, if I say I'm autistic, people are quick to point out I function, which is laughable.

I function on my own level, which changes daily, as does Morgan's. Some days are better than others. There are days when I cannot take care of myself  well because it eats up whatever tokens I have. I save up my energy for the kids when they come home. I'm laconic, withdrawn, and anxiety ridden (let's face it, I'm always anxiety ridden).

Then there are days when I put on my best face, go out, do all the things I can do, and come home so drained I can't see straight. I'm tapped out. I've had to interact too much. I can pretend to enjoy it, and sometimes I even really do, but damn. It's hard.

So... how high functioning is that? What kind of functioning is that? Is it because I live in a home with my husband and two children that I'm HF? Would it matter that I'm not sure if I could do this without my husband's help and freely admit it?

When you ask about or address functioning levels, be it toward children or adults, be careful, please.

They're relative and change daily, weekly, or monthly. They really don't matter and don't convey the bigger story at all. They're not able to prove autism "credentials" or anything of that sort. For some, all they do is slap someone in the face.

Perhaps ask instead how the person is doing. Or how how far they have come. Don't assume to know the full story when you've been on board for barely a chapter.


  1. I hear ya! This is my life also!!! Keep on Mommy-ing!

  2. Labels are for cans. Ok, not original, I know, but it's how I feel. My kid has so damn many conflicting and confusing labels that it paralyzes everyone trying to work with him until they stop and take stock of the child in front of them. Suddenly, it all changes. *sigh*

  3. My question has always been....what does "functioning" MEAN anyway? Functioning where and in what capacity? People use the words "high functioning" and "low functioning" but what they really mean is "more normal" and "less normal". Drives me nuts. The whole concept discounts both the strengths and struggles of the people who we label. I say we chuck the high/low verbage out the window.

  4. Did you write this clear out from my head? It sure feels like it as you echo what I've been saying for a long time, from the kiddo to my own "functioning" level. I hate the labels. They do shift, they mold, they adjust, they are an ever changing kaleidoscope of colors.

    I hear ya. ((Hugs))

  5. I feel your frustration, my "high functioning daughter" has many problems socially. You look at her and she seems "normal" , But, she has no friends, they don't know that she has Autism, they just think that something is off. She doesn't want her peers to know, (13years old). The problems are different, but they are still there. Social, hygiene, eating, coping.

  6. My problem has always been that, when I take my NT kid to stuff, there is not a SINGLE parent sitting around saying things like, "my son is on the low side of normality" or "my daughter can tie her shoes, this makes her smart and on the higher side of normal." Just as MamaSab pointed out, these concepts stink. I'm all for chucking the verbage out the window.

  7. Yep! Similar situation for me and my son. I understand that many people (including myself before I learned about the "spectrum") just aren't educated enough to stop themselves from saying these things, but it still bugs me. I am particularly annoyed when my (well meaning) EC teacher compares my son to "lower functioning" kids in the class and also is shocked when she finds out what services we recieve when she has "other kids who need it way more than your Lucas..." . seriously.

    I do believe though that it has to be difficult, if not completely confounding, to NT's to try and understand the AS brain. While I don't fault them, I still feel annoyed that on top of living life with these challenges, we also have to continually educate others about what it means and defend our right to validation... does that make sense?