How Do You Spell Despair?

Fathersvox and I are shell shocked right now. Well, let me speak for myself, as he and I haven't really spoken since we came home from seeing the psychologist who did Sweet M's ed-psych evaluation. So let's start this whole thing all over again . . .

I am shell shocked right now. Earlier today we had the meeting with the psychologist who did Sweet M's evaluation. He was concerned about "her disorganized thinking." That her language and communication disorder cannot fully account for what he called her "associative and psychotic-like thought processes." "Psychotic" is not a word that a mom wants to hear in the same sentence as her child's name. But since autism used to be considered "childhood schizophrenia," I forged forward with my questions.

I asked if he's saying she is psychotic. No, just that her thinking is disorganized in the same ways that thinking is disorganized in psychotic people. Does she have other symptoms of psychosis? No, he doesn't think she's delusional, or hearing voices, or schizophrenic, but that she is in her own world, and therefore oblivious to the logic of the world around her.

So I asked if he thought the autism Dx makes sense. Afterall, we've been warming up to the autism Dx for nearly two years.

No, he was emphatic, she's not autistic, he said. And it certainly wouldn't make sense as an educational category for her. She's not completely withdrawn, he said. She's interested in what's going on around her. She doesn't belong at the $72,000 school for ASD kids that you looked at, though they'd be happy to take your money, he said. Fathersvox quipped, Good luck to them if they can find our $72,000 because we can't.

At that point I was thinking, Geez, all the autistic kids I know and read about are interested in what's going on around them, and are engaged at some level with their families. I'm thinking, what sort of autistic kids do you know that are completely withdrawn. I don't know any autistic kids like that . . . I understand the idea that having an autism Dx in New York City isn't great because then you get an autism educational classification and they send your kid to an awful 6:1:1 with no academics. But come on — she's not withdrawn enough to be autistic, but her thought processes are psychotic-like? What's up with that?

No, he says, her problem isn't autism. It's more a psychiatric problem, he thinks. And then I am completely stupefied because I thought autism was a psychiatric diagnosis, as well as a neurobiological condition.

People, I gotta tell ya, over here at Autism's Edges my heart is breaking. Why can't anyone see the kid that is there? Why can't anyone help us with this — help us with her? How can this be so hard in the middle of the richest city in the richest country in the world, seeing the supposedly best of the best doctors? How can this be like this? And this guy is a good guy, a nice guy, a lovely person, and the head of child psychology at a huge and prestigious institution. And I feel confident that he has no idea how upsetting his lack of clarity was and is. And frankly, I wouldn't even begin to know how to tell him.

And then there is the matter of her academics: reading at a late first or early second grade level instead of a third grade level (her age group). He says she's so underperforming academically that she won't get into one of the two schools we've identified as possible placements.

I say that he probably can't have any idea how hard we have worked to get her reading to where it is now. I say I feel as though we've been scaling Mount Everest since the reading emergency of fall 2005, and now someone tells us that we're not even at the base camp. He nods sympathetically.

He mentions her throat clearing behavior and says he thinks it's probably a tic, and that we should see a neurologist. Of course, he says, then all you'd really have is another diagnosis, though some of the medications for tic-disorders might help with other things going on for her.

So he's saying that her problem is psychiatric, but that she probably needs to see a neurologist (We tell him that we've seen two, but still, he thinks it would be good for us to see another neurologist, even though one of the two we've seen is, he agrees, really excellent.)

And then, the piece de resistance. He asks about the possibility that she has sleep apnea -- because she has this gaggy throat thing that happens waking and sleeping -- and I mention that she has enuresis, but that her attention and school work got so much better when we let her have her nighttime diaper back. (For those of you who've been reading along here for a while, you'll remember this.) I mention that lately she's been getting ready to give up her nighttime diaper — that she says she's almost ready. And he says, well, she's nine years old, you should get rid of her diaper. You've gotta push her.

And I'm sitting here now, sitting here sort of shell shocked, and I'm just thinking — you don't get her, you don't get us, you don't get any of this. Remind me not to tell you anything about my kid, because you totally don't get it.

Then, of course, he also says, utterly contradictorily, and completely unpersuasively, you are doing exactly the right things for your daughter. She has a great psychiatrist. You're looking for a better school setting. You're doing all the right things. Except for those minor details that she's got psychotic thought structures, wets the bed because you're not pushing her enough on growing up, and has a gaggy throat clearing tic that you've not had treated. Apart from that, you're doing a great job. Really. No kidding. You folks are super.

In the cab coming back from the big midtown institute we are completely silent. Sweet M is with us, and we are all listening to the rain falling, the flip-flop of the windshield wipers, the splashing in the gutter. How low can water go? What happens to it on the way down? What does it take with it on its descent? And despair — how do you spell despair? I'm not sure but it begins with the same letter as diagnosis.