Autism Eternity

We've been recuperating today from yesterday's Dementor-induced dementia. Sometimes you just want to wrap your wounds in warm woolens and nestle in, forgetting everything from the day before, forgetting the crazy world of diagnostic ambiguity, and the disturbing implications that your child is "disturbed." You just want to wrap that old hole-y sweater around you and wear big socks and not think too much, since thinking (other people's and your own) is what got you into this jam in the first place.

We will be taking MOM-NOS's advice and getting chocolate, the only known antidote to Dementor-induced dementia, but we couldn't do it today. We would have had to go out for that, and we weren't going anywhere. We were in full-scale retreat. Called back the cavalry. Turned and ran like crazy back to our own little cave with the idea that we will never, ever, ever come back out again. Or at least never-ever go back to any ed-psych evaluator.

While I was curled up in a ball, I heard Sweet M in the other room as she yelled out to her father, "Hey F___ (she calls him by his first name), What's eternity?"

"Ternity?" he asked.

"No, E-ternity," she said.

"Oh, eternity. Hmmh. What's eternity? Well, it's uhmm. Ask your mom, she has a PhD — she oughta know what's eternity."

He might have just said English is her first language and not mine, but whatever.

"Ma-om, ma-om, what's eternity?" she yells to me in the next room.

And so I join her in the living room. She's watching a cartoon, and someone must have said "eternity."

"It's all the time that ever was and all the time that ever will be. It's all the time always."

"Oh. It's a lot of time."

"Yes, a lot of it, all of it, ever."

Lately we've been hearing a lot of questions about time over here. Sweet M is coming into time . . . coming into some idea of time . . . into her understanding of time.

Apparently she is late on this, as on so many other things, and one wishes one had all the time in the world, so that there would be no problem of catching up . . . Or being left behind. One wishes one's child wasn't clocked against the averages of her age group. One wishes one had eternities to help them get where they're going.

That would the the sort of autism every day that would work for us: all the time we need to get her all the help she needs. No developmental windows that are constantly threatening to close forever. No emergencies on the cusp of puberty. No developmental changes among the typically developing that leave her out in the cold. No nine month school calendars that leave her with three months off and no therapy, no services, no assistance at all. An autism eternity — That's the sort of autism every day I need.

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.

Working Memory, Part 2

Inspired by yesterday's experiment and your comments on it, I did a very short experiment with Sweet M today. The question we are exploring: Do we have a language processing problem or an auditory processing problem?

I wrote three sentences in her workbook:

I asked her to read them to me, which she did with ease, if not with prosody.

Then I closed the book, and asked her what color the house was.

She acted as though I was asking her what we used to call a no-brainer. Blue. A-duh.

Eureka!

Tomorrow I'll try to do the experiment that Kristina suggested, and see how it works if she can read silently. I actually don't know if she knows how to read silently yet, so that will be interesting. Apparently silent reading is a relatively recent inventions among we humans . . . Greek scribes and such used to read everything aloud and libraries were very noisy places because everyone was talking to themselves. Sort of like singing along with your iPod.

Meanwhile, Sweet M brought these drawings home from school. Those of you who are regular visitors at Autism's Edges will be familiar with the house motif . . .


I asked her about the green, and she said, "Oh, it's a tree house."

"Cool. Who gets to live there?"

"No one. It's for a club."

So, I suspect, social anxiety, and the desire for some sort of community, continues unabated. I feel as though I have to figure out something about this . . . We're more than half way through the school year and she's not had one playdate invitation, and has not been invited to a single birthday party. That is quite the change from last year, and worries me more than I can say.

In the same portfolio, there was also this image of a mother bird roosting — Sweet M pointed out that the six eggs are cracked and so just about to hatch — and I wonder to what extent it's a portrait of her me, having put all of my proverbial eggs in the one basket of one sweet child. I want every synapse to to have a chance to bloom.

On the other hand, check out the tag on the bird's leg. She told me scientists are following the bird. And perhaps we are, with all these tests and experiments.

Is the bird crying, or sweating, or are those just a couple of loose feathers?

The Season of Testing

There are seasons created by the angle of the planet in relationship to its source of light and heat, and then there are seasons created by our calendars — by the activities and events that we organize around the cycles of the earth around the sun. In the autism parenting blogosphere, it seems that we are in the season of testing, which will soon give way to the season of placement meetings.

Many of us are shuffling out little ones off to the very best psychological professionals that our resources and geography allow, perhaps imagining that someone new and better could unravel some of the mysteries that are our beautiful children. Others of us are, perhaps wiser in that we hold out no hope that tests will tell us much about our dear ones, rely on testing provided through our faltering system of public education.

This time we were in the first group — we had sought out the services of the most highly recommended educational tester in the city. Either way, there is a day when the written report arrives, when we sit in front of it searching for signs: what does this score mean for her future, what does this line suggest about where we should send her to school, what could we do for her that we aren't already doing?

For me, that day was Monday. The report came as an email attachment. Because we'd gone to such a sought-after evaluator, it had taken more than two months to get the write up. But when it was finally done, it came instantaneously.

Perhaps it was worth the wait. For the first time ever we have a report that seems to be written in English — I can't even find a single phrase of arch psychobabble therein. And, as the doctor told me back on the day of the testing, Sweet M's IQ jumped by ten full points. She is described as cooperative and compliant (rather than oppositional and defiant, as in the prior report). And next week we'll meet with him to ask him about his assessment and recommendations.

All of this would seem to be good news, wouldn't it? But still I am left this week longing for some image of the child in the fourteen single-spaced pages, some signs of Sweet M herself. There is one place, midway through, where the report mentions her idiosyncratic speech:

M's thought process was difficult to evaluate more precisely due to her reported expressive language difficulties. However, there are some concerns regarding her functioning in this arena as her verbalizations did appear to be idiosyncratic and unusual. As mentioned earlier, she would often begin responses with “I vote,” “I’m voting,” or “My choice is.”

Ah yes. There she is. That's her, that's that dear girl. Back in January she would start her sentences that way. Now she has moved along to another phrase . . . if you ask her a question she'll say "According to my calculations . . . " and scratch her head as though she's deep in thought. My guess is that all of this is strategy to stall, so that she has a few extra seconds to try to formulate the expressive language she needs to reply to the question at hand.

What was most interesting in his findings was the lack of verbal working memory that little M possesses. I found this fascinating, and so set out to do my own testing.

We were lying around on the bed, and I said: "M, let's do an experiment — a listening experiment."

"Okay!" she replied brightly.

"Listen carefully to what I say."

"Okay!"

"I'm going to say three things, then ask you a question."

"Okay!"

"Ready?"

"Okay!"

I spoke slowly and paused briefly between each sentence.

"The house was red. The car was green. The dog was brown. What color was the house?"

"Can you say it again?"

"The house was red. The car was green. The dog was brown. What color was the house?"

"Green?"

"Hmmh. Nope. Sounds like it was hard to remember. Let's try something else."

"Okay!"

"I'm going to say three sentences, and I want you to repeat them after me, then I'm going to ask you a question, okay?"

"Uh-huh."

"The house was blue."

"The house was blue," she repeated after me.

"The car was green."

"The car was green."

"The flower was pink."

"The flower was pink."

"What color was the house?"

"The house was blue!" she exclaimed.

So she can't remember the language unless she repeats it — one of those crucial functions of echolalia.

I try to imagine what my life would feel like if every time a new set of words came into my ears the content of the second to last set disappeared. How confusing, how scary, how anxiety-provoking would that be?

The seasons come around each year, and as a species we've had millennia to grow accustomed to them, to learn about them, to see the repetition in them, to take it in. Each year some of the same things, over and over and over again. Repetition. And with this most recent swing around the sun, with the season of reporting, more light than heat.