Pervasive Hopeless Syndrome-Not Otherwise Specified

On Saturday I heard Temple Grandin speak at the New York Chapter of the National Autism Association conference. Grandin is an impressive speaker. She stood at a podium in a packed school gymnasium for more than two hours offering advice and inspiration to parents and grandparents and teachers who were looking for answers. She was wearing her trademark Western shirt, one with elaborate embroidery across the yoke, and kept the audience mesmerized with stories of cattle and ranchers, autism and learning, brain anomalies and neurological plasticity. She attributed her own formidable public speaking skills to years of experience and practice, not to some innate talent or gift.

I'd gone to Grandin's talk less for answers than for a strong dose of hope. Two shots of hope, straight up, with a chaser of muted ambition.

Last week we had the sweet girl's parent-teacher conference. I had been looking forward to the parent-teacher conference. After all, I'd seen the head teacher the week before and she had been raving about how wonderfully Sweet M has been doing -- how she's enjoying the reading for English class (a book about two boys with disabilities who team up to support each other) and about what an amazing time she'd had on the overnight field trip.

But as soon as we walked into the classroom, I could feel something wasn't right. If we were about to get a terminal diagnosis with a one-month life expectancy the affect in the room would not have been more grave.

The homeroom teacher started off by saying that Sweet M is so organized, hardworking, and focused on succeeding with her studies. That she is so eager to please -- such a great student. That in reading that she has great decoding and fluency skills -- better than some of her classmates. And that she is so far ahead in terms of her organizational skills that she's able to get herself packed up at the end of the day and get started on her homework while she is still at school.

The way that this information was conveyed -- rote and joyless without any details -- I could feel myself waiting for the "but"-- for the sucker punch. It came quickly.

The trouble is, said the head teacher, that when she's doing her homework she asks them for homework help.

And that's a problem because?

Because it's a busy, hectic time since we have to help the other kids get their backpacks ready and make sure they have their homework.

That's understandable. So is the problem how she's asking? Is she inappropriate . . . insistent and demanding?

No, when we tell her that she has to wait she is okay with that, but she is anxious.

So what does the anxiety look like?

Well, she jiggles her leg and her body gets tense.

Yes, we see her jiggle her leg when she's concentrating at home. Is there a problem with her jiggling her leg?

Well, she's anxious. And we'd like her to be more independent with her homework.

This is the part where, if I were in a cartoon, the air bubble over my head would read "WTF?" Let me get this straight: she is organized, ready to go, working on her homework, asking you questions, compliant when you are unavailable, and that is a problem? The other kids can't get their backpacks organized to go home, but you need Sweet M to be more independent? WTF?

So what was it they were saying? She's too much work? We can't figure out what to do? She makes us feel like we're failing?

We like to team build with the school. We like to coordinate our efforts, so we don't always say what we are thinking. But really, WTF?

At the end of the conference, the assistant teacher who had sat throughout with arms folded across her chest and smirked her way through the conference said to the head teacher, "Phew, only two more [parent conferences] to go." While we were in the room. Standing right there. She said this when we were right there.

The next day I spoke with the principal. She told me that the teachers had already told her that the conference had not gone well. Well, they got that right. We can definitely agree about that, which is a place to start.

So what were these educators trying (and failing) to communicate to us with all of this gravitas and hand wringing and the mysterious but incongruent claim that they want our girl to be more "independent"?

The principal said that apparently Sweet M isn't understanding what is going on in class. After five minutes she is, in their words, lost -- completely spaced out. Daydreaming. In another world. She doesn't understand what is going on in the class discussion. And she doesn't look like she's paying attention.

In other words, she has limited auditory and linguistic attention. This is not late-breaking news in the Vox household, so why the gravitas? Why no problem solving? Why no strategies from the reading specialist? Why no ideas for interventions? After years, nearly five years of writing this blog and dealing with these educators, I am so weary of the long faces and hand wringing, and the looks of pity that are sometimes peppered with glances of contempt when one is seen as the parent in denial -- the person pathetically grasping at unrealistic hopes for their child's future.

I have grown incredibly weary of Pervasive Hopelessness Syndrome-Not Otherwise Specified.

Unlike PDD-NOS, very little is known about Pervasive Hopelessness Syndrome, other than that it is highly contagious. Although there is thought to be a genetic basis for PHS-NOS as there is a frequent co-morbidity of depressive disorders, most cases of PHS seem to be brought on environmental factors. For those with a genetic risk, for example, with first degree relatives with a history of depression, exposure to educators who have thrown up their hands can be particularly dangerous. The onset of the condition can be sudden, but there are antidotes available, including:

• inspiration from autism activists like Temple Grandin, Donna Williams, Valerie Paradiz, or Daniel Tammet.

• hanging out, online or in-person, with parents of kids on the spectrum who haven't given up hope. Here the list is awfully long, so I won't list them all. If you've been reading this blog, you know who I've been reading over the years.

• memoirs by the really pioneering parents of kids on the spectrum, like the late Clara Claiborne Park or Grandin's mother, Eustacia Cutler.

• one's own experience -- knowing that with skilled instruction and interventions and loads of patience one's child does grow and change and learn and develop.

But this last antidote can be in short supply. These experiences take time to develop.

It's easy to forget that five years back, back in November 2005 when I started this blog, that the reading specialists at M's school had told us that she was not learning to read, and that they did not expect that she would.

So last weekend, reeling from the debacle of the parent-teacher conference -- I went to see Temple Grandin and got one serious dose of hope. For the moment I am immunized against this most recent contagion of PHS-NOS. Now I have only to figure out how to stop the contagion at her school — how to get this posse of teachers to rally around my girl instead of circling their wagons and leaving her to the elements.