Tuesday, March 19, 2013

PDD-NOS, Ethan, and Me

The challenges of living with (never mind raising) a child with PDD-NOS/SPD (that's Pervasive Developmental Disorder Not Otherwise Specified and Sensory Processing Disorder) are innumerable. Today is a stark reminder for me, as I change my almost-four-year-old son, Ethan's, diaper, while listening to him jabber away in his own language. Echolalia is a frequent pastime of Ethan's, as is lining up toys, boxes, plastic bottles, turning light switches off and on, intermittently avoiding touching his 8-month-old brother, Alex, and spinning in circles while shaking his head and singing the words to Judas Priest's "Bloodstone" from memory...although no one can really understand him except my husband and myself, due to his delayed speech. He's really more on the level of a 2-year-old when it comes to language. Academically, though, he's right on par; in fact, when given an IQ test (which he was unable to finish because he refused to cooperate with the examiner), he was answering questions that were more on the level of 6- and 7-year-olds. He also has near-perfect pitch and a memory like a steel trap.

If you haven't put two and two together yet, I'll make it easy for you: PDD-NOS is a fancy way of saying that my son is on the extremely high-functioning end of the Autism Spectrum. I mean, he scores high, but it's obvious to anyone who spends any significant amount of time with him like I do that his behavior is pretty typically autistic a large part of the time. On the GARS-2 (that stands for Gilliam Autism Rating Scale, Second Edition), a score 85 or higher indicates a very likely probability of autism. Anything from 70-84 indicates the possibility of autism. Ethan scored 72 in his initial assessment, and 5 months after starting speech therapy and occupational therapy, he still scores 70. What a tease, wouldn't you say?

 Either way, my son is on the Autism Spectrum. 

It still hurts me to say those words...even typing them is painful. But it is what it is.

In this blog, which I expect will remain largely private, you're going to see the good, the bad, and the ugly. I'm going to share it when Ethan pushes me over the edge and makes me hide in my bedroom and bury my face in my pillow so I can scream until I go hoarse. I'm going to share how certain people have withdrawn from us and how some have outright abandoned us because they either don't know how or don't want to deal with Ethan and his behavioral issues. I'm going to share (minus details, of course) when my husband and I reach our limit with our oldest child and each other and get into some rip-roaring arguments.

I need to share. I need to know that other people go through what we go through every day. I need people to be aware of what we go through every day. And I need people to know that my son is still amazing, even though he's on the Spectrum.


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  2. I grew up with an uncle who was very autistic. He had an obsession with collecting the Sunday comics from the newspaper and TV Guides. They thought since he could catalog things he'd do well in a library and he had a short stint working in a school library but that didn't work out. When I was really little, I had no idea that there was anything different about him - I just loved hanging out with him because he was an adult that loved cartoons and comics. I thought he was the coolest. When I got a little older and grew out of the cartoons and comics, we drifted apart. Just thought I'd share.