ASD official

posted by Jeff | Wednesday, January 15, 2014, 10:03 PM | comments: 0

Last week we got the official word that Simon exhibits symptoms of Autism Spectrum Disorder. This hardly comes as a shock, in part because of the previous diagnosis of Sensory Processing Disorder and the related dyspraxia, which are frequently associated with autism, but also because many of his behaviors simply align with the most common and typical attributes of autism. The therapist feels he's a relatively mild case in that therapy can help him cope to the point that it won't be obvious to people who don't otherwise know, by the time he gets closer to his teen years. For us it's a relief to get this news, because it means we can start finding meaningful ways to help him, and he officially qualifies for various services. It also means that it wasn't poor parenting choices that led to certain difficult behaviors.

The "flavor" of ASD in his case is autism in the general sense, and not one of the other subcategories like Asperger or PDD. Clinically, they don't differentiate anymore because apparently different states mandated coverage and services for more specific variations, causing a strange regional "epidemic" for the subcategories.

As Simon gets older, some of the things he does make it more obvious that he's definitely wired differently. The earliest example was the precise ordering and "parking" of his toy cars, before he even turned 2. He still does this, in fact, where he doesn't "drive" his cars on the tracks, but rather makes sure they're all orderly and gathered in a queue. That category of things, compulsive behavior, rigid routines and resistance to transitions between activities, are definitely the things we see him struggle the most with. Of course, the language skill development is also a serious problem.

On the flip side, things could certainly be worse for him, and I hope that they don't get worse. He's very social with people he knows and loves, and in general he's getting better about talking even to strangers like restaurant servers. I guess he has never been the stereotypical autism kid who simply doesn't talk or engage with people, and I'm so thankful for that. Diana even stumbled upon a breakthrough where using phone alarms works well as a signal to get him to transition between activities, even if he isn't finished with them in his mind. There is always risk of developmental regression, and we've seen that on and off with speech development.

The next thing that happens is he gets a case worker to help navigate the therapy options, in terms of frequency and types. That's solid, because the advice of the OT was just "get him as much OT as possible," and that's not a strategy. This information also helps out the school district in developing an individual education plan, so they can set goals and understand how to help him get where he needs to be.

For me, I think this helps me view some if his more negative behavior in a more logical way. I know he's not being a jerk to spite me (and I do believe some kids learn to do that, from their parents), but there are reasons behind his thought process. It helps me be more patient with him, though admittedly now we have the added difficulty of trying to understand what is "normal" preschooler misbehavior and what is the result of his wiring.

We've been reading quite a bit about ASD (Diana likely ten times more than I have), and the truth is that there is a ton of misinformation out there. Like anything else, a lot of people claim some kind of expertise or something they saw on TV, but it tends to be the general dipshittery that originates from people like Jenny McCarthy around immunizations causing autism. It just ain't true. Ditto for dietary nonsense. Unless you have a child with ASD, I probably won't want to hear what you've heard, no matter how well-intentioned you might be. I'm just going to put that out there now.

Simon is a lot of wonderful things, and this diagnosis doesn't supersede any of those. He just happens to be this too. He's not broken, he's just wired a little differently. We're getting closer to having the right resources to help him out, and there's little doubt in my mind that he'll grow up and be like any other kid. Some things will be harder, but we'll adjust, and we'll help him adjust. 

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