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Wednesday, October 7, 2009

Neurodiversity, or Wishing the Spectrum were a Rainbow

I've been putting off this post for over a week now, and unfortunately I've had really good excuses to do so. So, to just jump right in and tell it like it is: on Monday, Hallie was officially diagnosed as having "High Functioning Autism/Likely Asperger's Syndrome or perhaps it's really PDD/NOS but isn't it really all just the same?" (not kidding; this is how it was put to us officially). And, so as to have other things to worry about that might distract me from doing hideous amounts of research and arranging yet more therapy services for Hallie (I ask: is it the autistic kid who is the puzzle or is it her schedule that requires puzzling out?), my mom had a major stroke, complicated by life-threatening pneumonia and atrial fibrillation that may or may not be associated with the stroke some time between Tuesday night and Wednesday morning. This had me rearranging my schedule so I could go to her bedside in New York and sit vigil (while watching monitors and experiencing some not so pleasant flashbacks wherein I attempted to raise oxygen saturation levels merely by concentrating hard enough on the beeping noises and blinking lights and praying hard that she did not get to a point where she would require mechanical ventilation since this is not, for her, an option. I got to ponder the similarities and distinctions between having a baby who was essentially born on a ventilator whose neurological status and brain function remains unclear when they somehow, perhaps miraculously, survive the assaults sustained by her body, sensory system, and brain and having a parent who could not breathe and whose neurological status and brain function remains unclear (since the doctors themselves have not even been able to broach the question of the extent to which the stroke has impacted my mom). Will either of them be able to communicate typically, eat typically, move typically? Who knows? Certainly, there are important differences between retraining an infant or toddler brain (which has been determined to have substantial plasticity) and that of an elderly woman. But both scenarios involve considerable onion peeling and lots of work on everyone's part.

Fortunately, right now it seems like the pneumonia is subsiding a bit and we're hoping for the best for my mom. She's still on oxygen support but is breathing better. I'll keep the blogosphere posted as I know more. And a big shout out to Anne and Eliza Grace for helping me keep things together this past weekend.

In terms of Hallie, well the situation is more complicated. Of course.

First, let me say that the diagnosis was a sort of a judgment call made by the developmental ped. She could have put off lowering the official gavel to another appointment (which I already have to make---seeing her in December or January involves making an appointment kind of about now). But, given some of the things she saw (she observed us through a two way glass wall) and heard (when we orally went through the parental checklist for autism spectrum disorders), and given how well Hallie has responded to therapy, and given that "Hallie is just not all that delayed now," it seemed to make sense to her to reclassify Hallie as disordered.

No longer delayed is good. Disordered: not so much. High functioning: very nice. Autism spectrum: I'm not even going to bother classifying that one.

So what was the basis for the diagnosis, you might ask. Well, here's a telescopic version:
-penchant for repetitive play
-substantial difficulties with pragmatic language (that is, using language in a social setting as a mode of communication. Hallie easily makes 3-5 word sentences and often longer ones. She labels things and requests items from us. But she does not take conventional, unscripted, conversational turns spontaneously)
-penchant for scripted language (set phrases) and echolalia (repeating back part or all of what is said to her, or what she hears others--including TV friends--say)
-problems with eye contact
-a gamut of sensory issues that suggest Sensory Processing Dysfunction
-low tone (related to prematurity, certainly, but the lines between 'post preemie syndrome' and 'autism spectrum disorder' are fluid. I'd put them both on a spectrum of atypical and leave it at that, really).
-penchant for routine that borders on need for routine (having to perform ritualized actions in certain contexts; wanting to repeat the same actions or things over and over; categorizing anything and everything in ways that sometimes make sense to the rest of us and often makes no sense to anyone but herself).
-very hyperactive and rarely sits still. Tends to flit from one thing to the next.
-limited pretend-play skills and a greater tendency to play nonfunctionally with toys.
-food issues and autism often are linked. So are GI issues. Needless to say, Hallie has both.

That covers the big stuff and if I've left anything out, I'll edit this list later.

Why high functioning?

-Hallie is super smart. She learned the alphabet and numbers before she turned two, she is sight reading individual words, she is not hyperlexic--which involves not understanding what she's reading--and shows no cognitive impairment. While learning in school might be hard for her in some respects because of her sensory issues (auditory processing, easily distracted, needs vestibular and proprioceptive input etc etc), she is eager to learn, interested in books, numbers, music etc and will likely do well in a typical school with supports, as far as academic stuff goes.
-Hallie works hard. She is eager to please and she is more social than your average (like there is one!) autistic person. She responds well to routine (see, it's a strength and not just a weakness!).

Why Aspergers?

-Who the heck knows? I thought that aspies didn't have significant language delays. I thought Hallie had a significant language delay. But maybe this is where she has caught up and the delay isn't so significant anymore?

Why this doesn't quite fit:

-Hallie rarely has temper tantrums or meltdowns. She can be redirected from routines fairly easily (unless food is involved; food is another ball of wax altogether for Hallie). Hallis is more likely to shut down when overstimulated, and I guess this could be seen as a spectrum-like-response.

-Hallie is very social. She is extremely interested in other kids, but does not know what to do with them. But, then again, from what our developmentalist said, this is fairly common in aspie and autie girls, and is under-studied because autism spectrum disorders are more prevalent/more diagnosed in boys, who generally tend to be less socially oriented.

-Hallie does turn take and share fairly well for a three year old.

Making and remaking these lists in my head could drive me crazy (or crazier). So I am trying not to do this (too much, at least). The point remains that autism spectrum disorders are very hard to diagnose in young children and that, at the same time, the earlier one diagnoses these and gets the kiddo the help s/he needs, the better. We already know that Hallie responds well to Floortime/DIR and OT. Adding in pragmatic language therapy (I am filling out the crazy questionnaire to get this ball rolling) and tweaking her IEP to make sure that her sensory needs and pragmatic language needs are met at school (this appointment is set up for the end of October and our developmentalist will look at Hallie's current IEP and provide suggestions for improving it) are not too onerous.

Our Floortime guru was a bit surprised that the doctor diagnosed Hallie as HFA/Likely Aspie but he agrees that the diagnosis doesn't really hurt us unless we let 'them' label Hallie. No one at school is going to treat her any differently (they all love her there--and she is thriving in a very wonderful way: more on this in the next post). So, as long as we don't let the label define the kid, and we only use the label to help her get the services she needs, we're okay. It'll be a struggle, for sure. Our society likes to categorize and schools, less-than-empathetic people, and even the well-meaning-but-benighted tend to use labels to discriminate and not embrace, but if we can work on turning the spectrum into a rainbow (and Hallie loves rainbows and 'lots of pretty colors'), we'll be okay.

Tune in tomorrow, or at least pretty soon, for a story of how OK we're going to be.... (and I promise to have some pictures up then, too!)


Joy said...

Your thoughts on the pros/cons of labeling are very much the way I think of things.
Robbie is too young (13 mo adj) for any sort of dx as all, but it's always on my mind anyway. Honestly, every time you post I think "wow, this sounds like Robbie" so I sometimes feel like I'm reading to get a glimpse into our future.

I don't want to think about if Hallie is/isn't really on the spectrum. I'm still a proponent of a new classification of "Preemie syndrome" which could probably almost be on the spectrum itself.

In the end, I guess it's all about what helps them the most and honestly, if decided he were really an alien transplanted into my uterus for Earth exploration meant that the doctors would help him learn everything he could, we'd go for it. Or something. ;)

Can't wait to hear how school is going!

Cora said...

I'm so sorry to hear about your mom. It sure is amazing how similar our NICU babies are to the sick/aging elderly. I just thought the same thing this week with my husband's mom.

We'll keep you all in our thoughts and prayers.

Momttorney said...

Thinking of you, your mom, and your magical little Hallie, and still cheering her (and her moms) on from afar. This parenthood journey is an intense one . . .

Kirsten Wood said...

Oh, Abby..... I'm so sorry about your mom. I hope the doctors are able to give you some good news soon about her condition.

And as for Hallie, she has continually beaten labels and exceeded predictions throughout her short life, even as she has faced obstacle after complication after setback, and there's no reason to think she won't continue to do so.

The dilemma of accepting a diagnosis that might not be quite accurate for the sake of therapies that might help must be agonizing, but as the other commenter Trish suggest, if the treatments can help, you can do so much to help ward off/fight the negative aspects of the labeling. You've done it in various ways your whole life. I'm sure it's exhausting to have to do it all the time for Hallie, but goodness knows you and Sharon have the strength and the commitment.

That you can even formulate the wish that the spectrum were a rainbow suggests the agility and creativity you will bring to this problem for Hallie's sake. However unlucky she was in her birth circumstances, she is even more hugely blessed in her mothers.

terri c said...

Lurker delurking to say, so sorry to hear about your Mom. It does sound serious and my thoughts are with you. And Hallie rocks!