Thursday, February 17, 2011

It's another.

Sorry for the "cliffhanger" yesterday. It wasn't intended as such. The post was getting incredibly long, and I kept breaking into tears, so I thought it best to stop and continue later (when I was feeling a bit less "bat shit crazy" to quote my very wise sister).


For as long as I can remember, I've been assured by doctors, therapists, teachers and friends that, while Simon is delayed cognitively and emotionally, and has myriad physical challenges, he isn't Autistic. After all; he's extremely affectionate, never seems over-sensitive to environmental factors, doesn't flap his hands, or have behavior problems (beyond immaturity) such a diagnosis simply wouldn't fit.

That may explain why, on Monday, when it was suggested that we needed to get an evaluation to look for communication problems, I at first thought that the fact that it was named the "Autism Diagnostic Observation Schedule" must just be some kind of coincidence. Perhaps the main reason for the test was to help Autistic children, but it could be applied to other kids' with communication problems as well? Like when they give you a drug intended for one thing, but you really need it because of a subordinate later-discovered side benefit.

Plus, when the doctor told me about the evaluation, he specifically said not to freak out. Therefore, he couldn't possibly be telling me that he suspected my son was autistic -- a statement like that would totally warrant some freaking out.

Instead, I was calm. I listened, and nodded along. I answered lots of questions. I agreed we needed to find out more.

Before leaving, quite reasonably, I summed up our discussion:

"So," I said, "you're saying that, from what you can tell right now, Simon is not intellectually disabled, but clearly has some sort of communication disability and we need to do another evaluation to find out more about that."

The doctor looked at me a little quizzically, and slowly replied, "Yes... that's fair."

Of course, at that point he may have been wondering if I needed an evaluation. Holy denial, Batman.

It wasn't until a couple of hours later, when Simon was in school and I was alone at my desk, that I started to replay the conversation I'd just had with the Neuropsychologist. I began to recognize that his questions, and the questions of his post-doc had become increasingly focused. I remembered comments they made about Simon not making eye contact in the playroom, and about how he didn't tolerate being redirected. And then I began to Google furiously. I looked up every reference to the ADOS test I could find, and nowhere did it state that the evaluation was used for anything except diagnosis of a spectrum disorder.

Then, I Googled Autism and discovered that there are 5 main classifications within an incredibly vast array of sometimes conflicting symptoms. There is Asperger's, "Classic" Autism (ASD), Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) sometimes called atypical autism, Rett Syndrome, and Childhood Disintegrative Disorder. All of these classifications revolve around abnormalities of social interaction, communication and behavior. The amount of "markers" in which of those 3 categories an individual has, and the surrounding circumstances (medical or otherwise), ultimately dictate the "type" of spectrum disorder a person is diagnosed with.

It was as I was reading this that the post-doc working with our Neuropsychiatrist called me. She had conducted much of the evaluation, and had been a part of our final conversation. She was calling me to see if it was alright for her to email me an evaluation for Simon's teachers, and to see if, after I'd had a couple hours, I had any more questions. She said she and the Doctor had discussed our meeting further and they felt that they had raised more questions than they had answered. (I also think they picked up on my denial, but that's just a guess.)

Boy, did I have questions. I asked about the ADOS test, and my realization, that they were considering an autism diagnosis, was confirmed. Specifically, she said that from what we knew now (other tests, scoring and further conversations notwithstanding) the diagnosis currently on the table was PDD-NOS, also called atypical autism. With PDDNOS, the main difficulties for the affected individual were social interaction and communication. Precisely the areas in which we have concerns for Simon. I tried to push a little further, but she was responsibly non-committal and reminded me that they were still reviewing and gathering information, and that I could email her with questions anytime.

My voice broke over the phone as I thanked her for her time, and effort. I hung up and dissolved into tears the rest of the way. I don't know how long I cried.

It has taken me a few days to pull myself back together. As usual, my main coping mechanism has been to find out as much about PDDNOS as possible, as well as trying to rule out any other options that would explain our concerns and Simon's challenges. In doing so, I can't say I have found anything else that would come close to fitting Simon. But, I have found a lot of the indicators for PDD-NOS fit very, very well.

There are many, but here are some of the ones I think are most significant (so far):
  • Unusual responses to sensory experiences -- i.e. the Sensory Processing Disorder that out OT just diagnosed. To my surprise, it turns out that kids on the spectrum can be both hyper and HYPO sensitive. 
  • The way that Simon constantly, and very accurately, repeats dialogue from TV, or songs, or nursery rhymes. The way he repeats our statements when we talk to him, rather than really respond; or the way he sometimes repeats, delays, and then replies. (Ex. Mom: Do you want a drink? Simon: You want drink? then, a moment later, Yes.) This is called echolalia. (I should note here, that this is actually a good sign, as children displaying this disorder often gain normal speech in later life.)
  • The way Simon is often in his own world and does not seem to see or hear us. 
  • The fact that Simon does not understand reciprocal language or play. With peers, he plays beside them but never with them, unless it is a game of chase or rough house or some other gross motor play. 
  • Simon rarely seems to imitate or engage in any kind of creative pretend play. He tends to play with toys in atypical ways, as well.
  • Abnormal attachments to odd objects. Simon always has to have a tiny "something" held in his right hand. He tends to go on jags with exactly what the object is -- he held a piece of mulch for about a year, then legos, then barbie shoes. Lately he's been more versatile in his object selection, but whatever the piece du jour is, he gets VERY upset if you make him relinquish it.
And so, the more I look, the more I see. As you can imagine, I have an overwhelming amount of thoughts, feelings and theories on all of this, and I know I have so much further to go. So much more to experience, and to  learn.

Last week, when I was feeling overwhelmed after our long day at the hospital, I likened our journey with Simon to the storied yellow-brick road to Oz. I said that our road "wound dizzyingly far into a distance I wasn't sure I wanted to see." In retrospect, having now taken the next steps onto those lutescent bricks, the words seem slightly prophetic.

Though I know that Baum's inspiration for the road in the story is said to have come from an actual place near his home in Michigan, I wonder at the underlying intent of the color choice. Yellow is the color of jaundice, of sickness and fear, all of which I most certainly feel. But, yellow is also the color of optimism, of spring flowers dotting the green grass, of sunshine dispelling the darkness. That is what I am trying to keep my sights on. Where there is knowledge and understanding, there is hope and progress. I just need to keep putting one foot in front of the other.

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