Susan's Blog

Sunday, October 8, 2006

The Low Road

It is only now getting light. Even in the semi-darkness of dawn I can see that the leaves on the trees are past their prime, with a brownish cast to them, set off eerily by the orange street light. I woke up way too early this morning; my mind is already on the go, frenetically bouncing from topic to topic, trying to locate the cause of my buzz.

And it’s Nat. I am breathlessly watching new progress and wondering what to do to nurture it, and what it’s about. Of course, I suspiciously fear talking about it a little bit because I don’t want it to disappear. I know that is “magical thinking,” but without enough sleep it seems more real to me than in the comfort of soft, yellow daylight.

Nat is smiling more than ever. He seems more flexible, more willing to do anything we’re doing. He also seems more jittery; he mutters to himself constantly, in his own language and he will not let me join with him in that. But I don’t care. I feel his happiness so clearly, he could be spouting farts and it would be okay with me. Though far more problematic with the public and his brothers.

In her very articulate and thought-provoking blog, Kristina Chew has brought up the concept that stings like a bee, and I don’t mean Mohammed Ali: the whole issue of “high-functioning” and “low-functioning” in autism. I remember when Nat was first diagnosed, and he was termed “Fairly high-functioning.” Now, he is more frequently said to be, “fairly low-functioning.” I believe the designation is all about how much a person talks. As I said to Kristina in her comments page, what a completely Neuro-Typical-centric definition of functioning! Why the premium on talking?

Or is the definition even more insidious? Is “high-functioning” code for “like normal?” What does that mean? “Acts like a ‘typical’ kid?” Meaning what? Mouths off to parents, dresses badly, considers Yes to be great music, pretends to be interested in high school clubs only to get into a good college, is really only looking to get laid or as close to it as possible without consequences? (Oh, sorry, I just described myself as a ‘typical’ teeenage girl back in the 1970’s). Oh, yes, I would have been considered ‘typical,’ and ‘high-functioning.’ You could not shut me up! I was an A student, I was on two teams, (field hockey and track) I always had a boyfriend, had a best friend, was part of a group of kids just like me, I was in National Honor Society, Ski Club, Latin Club, went to an Ivy League school, blah blah blah .

Which brings me to my point. Nat is, perhaps, none of the things mentioned above. Well, he is on more teams, however: swim team, soccer team, basketball team, and maybe ski team (we’ll see how it goes). Nat does not go after girls (or boys); he is not in any clubs (his school does not have clubs). Nat wears whatever I put in his drawers. He doesn’t know from Abercrombie or AE. Nat will not tell me what is on his mind.

But neither will Max. Maybe for different reasons. Or maybe because neither of them knows how to figure out how to express such a thing.

But, Nat, as I have said, is on at least three teams and has been on more in the past. Nat helps me make dinner, clean the house, bring things in from the car, mow the lawn. Nat eats anything I put in front of him; any concoction I’ve attempted in the kitchen. Nat rides a bike, uses an iPod, reads, does all of his schoolwork without complaint.

Nat had a bar mitzvah. Nat says the prayers at the beginning of any holiday we are celebrating. Nat will always give you a piece of whatever he is eating.

Nat has his own language which he does not want to share with us. Nat likes to pace or lie around on the weekends, rather than I.M. with people or hang out at a mall or spend money. Nat may not even understand money, but he does understand the moment I am finished paying in a restaurant, because he waits for that before he stands up.

Why not make “high” and “low” functioning be about how happy a person is? In that case, I am, half the time, “low” functioning. Nat is far more “high,” in that case.

I can’t begin to convey the specifics of what makes Nat a person; a full, deep, complicated young man. I know what I feel when my eye picks him out, walking back and forth in a crowded airport, and I make fleeting eye contact with him, and there is a burst of lightning between us that I know he feels, too. He just doesn’t go on and on about it the way I do. He notes that I have arrived (yesterday at Logan airport), and instead of pacing back and forth, he starts walking straight, out of the airport. It’s Mommy. Yes.

How do you draw a definition around an entire human being? “High.” “Low.” It is about as telling as a chalk outline of a crime victim. And as dignified.


Nat seems to be showing that progress can be made at any age. And what will you do to lead him forward?

Talk is seen as a standard in how society works. It’s hard to interact in this society as a whole if you’re ability to talk is impaired, I think.

— added by Someone Said on Sunday, October 8, 2006 at 8:02 am

Hey Guy –
Yes, but my point is, that standard is a bit arbitrary. I think society needs a little tweaking. I am trying to lead society forward! 🙂

— added by Susan Senator on Sunday, October 8, 2006 at 8:05 am

I do not disagree, society certainly needs to be led forward!

— added by Someone Said on Sunday, October 8, 2006 at 8:29 am

Everytime someone uses the term low-functioning to describe by daughter to me, I get this terrible feeling in my chest. These therapists/doctors/teachers don’t know how hurtful it is to hear the words, isn’t it their job to see the possible potential in people? These professionals seem to immediately put her into the dustbin of society. Blah!

— added by Doris on Sunday, October 8, 2006 at 9:02 am

You probably already read this but I think it must be important to remember. And glad to hear that Nat is happy (^_^)

Also recommend any posts in same blog, about HFA/LFA and stereotypes.

— added by Natalia on Sunday, October 8, 2006 at 10:25 am

You get to the heart of the issue here, Susan—-Why do we even judge our kids by something like “functioning”? As if there is some list out there of things they have to do be “achieving.”

And I know what you mean about not wanting to talk about one’s child doing well and fearing that this will “jinx” it. It has been the same with Charlie: He’s been peaceful, flexible, eager to learn, eager to do whatever we ask. After some hard times (and he is not as old as Nat, of course, and still has adolescence to enter…..), there has been sme warning daylight.

— added by kristina on Sunday, October 8, 2006 at 10:46 am

Interesting concept. I have been holding my breath, waiting to see if my now 2.5 year old son will emerge as hfa or lfa or asperger’s or whatever…hmm. Food for thought, thanks. Oh and congrats on Nat being happy. 🙂

— added by ASDmomNC on Sunday, October 8, 2006 at 11:17 am

I know exactly what you mean! It’s so frustrating to hear “Your child is low functioning, get used to it!” only to hear “But she’s so happy!” all in the same meeting.

— added by Anonymous on Sunday, October 8, 2006 at 12:29 pm

“How do you draw a definition around an entire human being? “High.” “Low.” It is about as telling as a chalk outline of a crime victim. And as dignified.”

Very powerful. There’s your next book, right there.

— added by hollywoodjaded on Sunday, October 8, 2006 at 2:48 pm

That was very powerful. You brought up such an important issue. As we sit and label and judge we don’t always look at the impact that it has in people’s lifes.

People weren’t designed to fit neatly into categories.

— added by Brony on Sunday, October 8, 2006 at 3:01 pm

I love guys like Nat. 🙂 We need more guys like Nat and fewer guys who cheat on their taxes and their wives and speed on the freeway.

Rain Man was described as “very high functioning,” in the movie.

My ASD kid is happy almost all the time, s/he is much more “high functioning” than I am.

If you count being nice and thinking the best of people as “high functioning” … s/he’s much more “high functioning” than I am and a spoiled, snotty high school student would be “low functioning.” White collar criminals would be extremely “low functioning.”

— added by Camille on Sunday, October 8, 2006 at 6:49 pm

I prefer to say that I have seen my son’s peers and want him to distinguish himself – instead of making him indistinguishable from his peers. I also have OCD and chronic depression – since childhood – and I think that has made me more appreciative because of the intense awareness of being different especially when I was a kid.

— added by Anonymous on Sunday, October 8, 2006 at 9:20 pm

Thank you for developing this post, I think this issue of labeling deserves serious discussion.

The gift of speech is a wonderful thing, as are the gifts of sight and hearing. However, the presence or absence of these gifts does not define the person.

— added by Mike McCarron on Sunday, October 8, 2006 at 10:49 pm

Mike –
I am honored to have you comment on my blog! Thank you.
Kristina –
I am still hoping to come to your wonderful conference in NYC on the 27th!
Camille –
We have a lot in common.
Anonymous – We do, too.
Jen –
Don’t pay attention the them!
Brony –
Thank you.
Doris – Ignore them and give your daughter a kiss.
Natalia – I have an RSS feed for Ballastexistenz. Thanks!
Hollywoodjaded et al. – thank you.

— added by Susan Senator on Monday, October 9, 2006 at 2:50 pm