How Old is Hallie?

Lilypie Fifth Birthday tickers

How Old is Lea?

Lilypie Second Birthday tickers

Thursday, April 9, 2009

Thoughts about the Spectrum: Autism Awareness Month

I suppose that our testing season for Hallie could not have come at a better time in terms of heightening our awareness of the Autism Spectrum Disorders (ASD). A couple of weeks ago (as noted in a few posts back), we began the process of evaluation. This was supposed to have continued last week at our scheduled evaluation at the Center for Autism (the oldest such center in the US) but we discovered, only after schlepping the whole family out there, that they forgot to put us on the calendar of the evaluation team of doctors and learning specialists (this in spite of a confirmation letter that I had in hand, as well as a couple of confirmation phone calls). I hate when this sort of thing happens (honestly, it's only happened once before and then we were not so much left off the calendar as subject to double booking that meant a one hour appointment actually lasted four). But a tantrum would not have helped (unless, of course, we were seeking to diagnose me!). More importantly, we have the rest of the CHOP evaluation coming up on Tuesday, when we will subject Hallie to the ADOS (the Autism Diagnostic Schedule-Generic), where she'll be assessed by a therapist who will watch her play with a bunch of toys in a clinical setting. The testing is happening in a clinical environment, at nine am, with a bunch of strange, new toys. Unless Hallie really surprises the heck out of me, she will have massive separation anxiety from me that will involve tears, a tantrum, and potentially vomiting, followed up, in a best case scenario, with furious play with toys that involves throwing everything in the middle of the room, perhaps rolling around in it for sensory pleasure, and examining each and every item to see how it works before discarding it onto the debris field. If you invite Hallie into your home, you will witness a lot of this curious- toddler-gone-wild behavior (and hopefully not the vomiting!). In case you cannot tell yet, I am quite concerned about the outcome of this session.

Meanwhile, regardless of diagnosis, we have begun Floortime-DIR therapy (we've had two sessions already and a third scheduled for this week) where we are learning how to engage with Hallie on her own terms (get on the floor with her, as it were) to elicit conversational cycles (non-verbal and verbal) and help her advance her communication skills. And we've started the process of getting her additional, private Occupational Therapy at CHOP for her raging sensory issues.

So, yeah, we're thinking about ASD, its relationship to prematurity, and how all of this manifests itself in our kid. I haven't put all the pieces together yet (quite apropos since autism is often depicted as a puzzle the pieces of which--which are always arrayed a bit differently in each individual--don't quite fit together neatly). But I'm going to try to tease out my thoughts about these things in this post, at least in a preliminary sort of way.
One week later:

Well, it's taken me long enough to get back to this post! This two-mom, two-kid (one of whom is special needs and over-scheduled), one part time nanny thing is really incompatible with things like grocery shopping and laundry and tax filing and hence even worse for blogging. Sigh. Anyway, I'm sitting here gobbling down some matzo ball soup (Happy Passover and thank you so much Sheila, Brett, and Rosa for facilitating my dinner tonight!) and still thinking about the ASD. Hallie had her ADOS (a standardized diagnostic test that will help determine if she is on the spectrum) on Tuesday morning. Hallie could not have been more cooperative and personable: she clearly remembered that she had had fun playing at the office and was well disposed to playing with the toys they offered once more. And, since the assessment was scheduled for 9:00am, she was at her freshest (and hungriest, since we did not have time to feed her before the appointment. This came in handy for the snack which was part of the assessment). Hallie is not one prone to tantrums but when she's stressed out she checks out, zones out, and shuts down. So that she was not feeling any stress (even ours) was a good thing. And we could remain in the room for the testing. This staved off her separation anxiety which was a good thing. Anyway, other than the birthday party module (where she was to stage a mock party for a baby doll that involved fashioning some light yellow playdough into a cake, placing some wooden pegs into it to serve as candles--the test stresses the importance of using placeholders and not the real thing as an accurate assessment of a child's imagination, and then blowing out said candles after singing the Happy Birthday song and serving cake to the doll), Hallie did fine....WE THOUGHT. Hallie had zero interest in the birthday party and preferred to just squish the playdough, but we did not think she missed anything else. WRONG. We're the kind of moms who scour the internet for scoring sheets (not too hard to find, though easier on my Mac google search engine than on Sharon's Dell. Who really knows why.). It turns out that Hallie lost points for this, that and the third thing all along the way. Since the cutoff for PDD-NOS/Aspergers is 7 points (0 is the best, anything above 15 is classical autism), we're fairly certain that we're cruising for a diagnosis come our follow up with the Developmental Ped on Monday.

We're not really sure what we think about this. On the one hand, it really changes nothing since we are interested in getting Hallie the services she needs to even herself out anyway. On the other hand, it's hard to hear the label 'disordered' applied to your child.

And then there's the matter of the application of a standardized assessment to anything but a non-standard kiddo. The whole birthday party scenario was aimed at testing whether a child has a 'Theory of Mind' (i.e., imagination). But what does one do if one's child has never really been to a birthday party? Or what if she does not like dolls? Hallie clearly does have an imagination (pieces of bacon look like ducks, dogs, and dresses; she uses pieces of cheese and hot dog to construct faces on her high chair tray). But she does not have a cookie-cutter imagination. And why should she lose points for reaching for the balloon but not pointing to it using her index finger (she does point, just not then)? Or because she was more interested in how the mechanical bunny functioned (she figured it out and could work the mechanical foot pedal on her own) and not in pointing to it? In any event, these are important, and troubling, questions but I am not sure that they are particularly worth asking in this case. Why? Because both of us know that, as smart as Hallie is, she DOES have some significant atypicalities and both Sharon and I are more interested in helping her even these out than in denying them and this alone warranted bringing her in for the assessment as soon as humanly possible after our ped raised questions about ASD and helping her in whatever way we can. Yes, it's complicated and yes, it's getting hard to juggle Hallie's schedule with parenting both her and Lea and doing the other stuff that the rest of our life entails (thank heavens for the fact that my leave coincided with all of this). But the alternative (dropping the ball, denial) are not an option, so on we forge.

That said, expect a picture-laden but hopefully as word free as possible (for me!) next time around!

(Meanwhile: 58 vomit free days and our kid tried and loved a flourless chocolate cake last night that contains both eggs and butter just fine last night. Yippee!)


Joy said...

58 days w/o vomit?!
I bow at the altar of vomitlessness.

I don't have much to add about the ASD stuff. It's interesting. And I find myself frustrated by the "didn't do it at the time but DOES do it" stuff. But I suppose extra services are good..


Anne said...

First of all ... good to hear 58 vomit free days.

Who decides that all kids should "pass" the happy birthday module? Eliza has NEVER made it far enough into anyone's birthday party (including her own) to even know what a birthday cake is. And what about people who for religious reasons don't have birthday celebrations? Or kids who hate food so much (Eliza) that there is nothing enticing about making a fake birthday cake?

Ugg. Testing. Harumph.

Sarah said...

Abby, I haven't gotten through your entire post (I'm working at the moment) but I wanted to run something by you. Our developmental therapist came by for a reevaluation on Emery for his 6-month IFSP. She is Floortime trained - not that that matters, but she has 2 schools of thoughts aobut preemies. First, their stability and gross motor and fine motor are different from a typically developing child (even if it is mild) such that there will be differences in interaction with other people and with skills because they have difficulty balancing and maintaing focus. They look ADHD or autistic because they don't sit still well or interact because their concern is maintaining stability. Her second school of thought is that kids with significant past medical histories who have PTSD look autistic. She told me to google the studies by Tronick and Nugent from Harvard about development - admittedly I haven't done that yet either as she just left an hour ago. You can email me if you want, but when you go in and if you do get a diagnosis it is imperitive to ask about PTSD and stability issues.

58 days without vomit! You are my nonvomit idol!!