Friday, April 26, 2013

Not Autistic Enough

I have a new supervisor at work who calls all of us his Aspergers cats. I guess you could imagine a workplace environment full of Sheldons from Big Bang Theory. While I can see that in many of my coworkers I struggle to see that in myself. Yet I'm not very social, I can perseverate on subjects, I am borderline obsessive-compulsive in my habitual routines, and when things stray from my expectations my world is completely rocked.

These are things I have come to recognize as I've gotten older, but looking back I can now see some hints. According to my mom, when I was young parades would scare me- the loud noises would bring me to tears. I remember one Christmas receiving a fireman's helmet, complete with a light and siren on top, that was the coolest thing in the world. That is, until I turned it on. When I got married, my wife and I lived in a little apartment. One day steam from the shower caused the smoke detector to go off which sent me into a panic attack. (Are you sensing a theme?)

I would consider my social skills and obsessive-compulsive behaviors to be personality quirks. But sensory overload- that I think is a real issue.

You'll notice I didn't mention the "A word" in last week's post, God Made Me Broken [ed. note: this has been sitting in draft so long this used to read "yesterday's post"- I apologize for the delay getting this out]. At the time we were dealing with my son's speech issues we worried about how this would affect him socially. The "A word" was always in the back of our minds, with my wife being a special education teacher and me with my quirks. Yet my son would make eye contact and would respond to his name- traditional rule-of-thumb tests in a toddler or preschooler.

But... He had his struggles socially. He couldn't understand why he couldn't maintain relationships. He would find things to perseverate on. And he did not adjust well to change. (Sounds a lot like his father). But he managed for the most part. That is, until a little over a year ago...

We noticed at school he was getting into trouble more and his grades were starting to slip. It wasn't long before it felt like he was tanking school completely. (And there were some environmental issues that contributed, but I won't go there) Everything seemed consistent with that dreaded A word: Autism.

We went to our medical provider and had him checked out. To be diagnosed for autism, one needs to show deficiency in three areas: social, language, and play. To us, this was a no-brainer. I mentioned his language issues before. But I didn't mention that as part of getting his IEP (Individualized Education Plan) for speech he was evaluated by a occupational therapist and we concluded that he had Sensory Integration Disorder. This explained why he didn't like to swim, would only run if he could touch something next to him (a fence or a wall), why he needs his snuggles every night, why he freaks out when his sister orders mac and cheese at a restaurant, and also why he cannot sit still in a chair to save his life. (More on SID at the end of this post...) And his struggles in preschool and kindergarten appeared to be socially related.

In addition to these evaluations he also underwent a series of tests whose score would help determine where on the Autism Spectrum he would fall. My wife and I also had to fill out a form describing our impression of his behaviors and what stimuli would set him off.

When we returned to the pediatric psychologist to hear the results we were eager to finally have an explanation, that we could finally receive the help we needed, that prayerfully someone would finally understand.

But we were wrong. My son scored just short of the limits defined by the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) for autism. (Important note: soon the DSM-IV will be replaced by DSM-V which limits the range of the Autism Spectrum even further, which is subject to much debate.) And he showed that although he had struggles in language skills and sensory processing, he was not deficient socially.

So what was this? I wish I could've understood all the psychobabble as the psychologist spoke, but I was too much in shock. I heard Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, which is a fancy way of saying it looks a lot like autism but isn't and we don't know what to call it) and Juvenile Bipolar Disorder which can be confused with ADHD+ (not just ADHD, it's ADHD Plus!). As he was speaking I was picturing my son, reviewing the tests in my mind, and trying to filter what the psychologist was saying through the definitions of autism as I understood them.

And a light went on.

I should note at this point that I am not a psychologist. I am not an expert in brain development or gene-mapping. In other words, I don't really know what I'm talking about. But I do know what I've seen and it occurred to me that many of these diagnoses overlapped, which explains why autism is so difficult to identify and is often misdiagnosed. Remember the three areas that help define autism- social, language, and play? Imagine any two of the three overlapping: social and language for example and how those behaviors would be different than if language and play overlapped. And I saw a pattern in my head- ADHD, Bipolar, and Sensory Integration are each overlaps of two out of the three. Autism would be an overlap of all three. Again, I am not an expert and this certainly isn't definitive, but it fit my son to a T.

And sure enough, there was something to this. A few months ago a study was released that claimed there was a genetic link between many of these mental disorders.

Vindication? I wish. My wife and I still joke about our son being "Not Autistic Enough" during good times, and we get discouraged when his teachers cannot understand him, or his diagnosis, during the bad times. We wish we could just slap a (relatively) well-understood label like autism to defend him. We're still struggling through this and learning a lot. And yes, this means there is another post (or two) coming.

I mentioned I was going to revisit Sensory Integration Disorder. This was another revelation for us as parents. It explained so much and helped us immensely. A a parent, if you've never heard of this and cannot figure out what is wrong with your child, I'd recommend checking out The Out of Sync Child. I also recommend everyone read this article, The Impossible Child, from the Psychotherapy Network. It is long, but necessary to help understand what these kids and their parents fight through. To be perfectly honest, the first time I read this article I cried because that was me narrating. That was my son being described. Maybe it will also shed some light for you. And like I said, I still have a lot to say about this, so I encourage you to come back (and I promise it won't be so long between posts this time!)

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