|Photo courtesy of Michael Lee's Food Reviews, which makes me want to drive down to Richmond, VA this weekend.|
|Image via South Park Studios|
Before you judge me for not knowing that my child was on the autism spectrum until now, Tweak's issues have always been subtle, and for a long time it was hard to distinguish between what might be spectrum behavior and what might be regular toddler/preschooler/little kid psycho bullshit. I have friends whose children show various expressions of autism, and Tweak didn't seem like any of them at first glance. 40 years ago, he would have been simply "quirky." We would have been enjoined by the school to help him remember to bring his materials and turn in assignments and develop better social skills, but nobody would have implied that his issues weren't something he would grow out of, if we addressed them properly.
Obviously, I knew something was up, because when Tweak was four years old, I took him to be evaluated by our county's Child Find service. Raising him was becoming increasingly difficult due to meltdowns, extreme avoidance of certain clothes, foods, and sounds, increasingly detailed and rigid routines and rituals, and physical clumsiness. We got a diagnosis of sensory processing issues, all related to fine motor coordination. Nobody said anything about the possibility of autism; they just kept talking about his handwriting ability. We got about 9 months of OT (Occupational Therapy). When I asked at the IEP meeting what kind of help we were going to get with the rigidity and meltdowns, I was told that "we consider these behavioral issues to be a matter of parenting." So I believed them. I accepted that Tweak was struggling for emotional stability and control because we had failed to provide it for him. I blamed my ex for being too indulgent and myself for failing to provide Tweak with a happy two-parent family.
As it turns out, this was a load of crap. The red flags were there all along. Sensory processing issues are common in people with autism. Tweak only wore certain kinds and colors of clothes (red sweatpants and T-shirts, nothing with tags, zippers, or buttons, which he still avoids), ate a narrow range of foods (texture being the limiting factor), and lost his shizznit the moment something happened unexpectedly or not according to plan. Haircuts were a screaming nightmare, so I avoided them as much as possible. He loved nothing more than to line things up and, later, to make lists: Legos, Pokemon and YuGiOh cards and characters, baseball and hockey teams and players, Hotwheels cars, stuffed animals, TV, movie, and book characters. He still does this. He's also fascinated with statistics - if you want someone to manage your fantasy sports team, he's your man.
Part of the barrier to getting an earlier diagnosis was that Tweak had no speech delays, and he is extremely smart. This enabled him to mask how much he was struggling to some extent. Also, he did grow out of some of the most problematic behavior, and he has a basic sweetness to him that belies how out of control he sometimes feels. Somehow, we floundered all the way to 3rd grade, where Tweak qualified for advanced academic placement. Though he seemed to enjoy and understand the material, he struggled with the assignments, both in class and at home. Math, he could do in his sleep while blindfolded, unless you asked him to explain how he solved a problem ("I just know that's what you do!"). But the language arts and social studies assignments started asking him to speculate on other peoples' experiences, how they might have felt, why they might have acted as they had. Add in some pretty serious attention problems, and homework was a complete shit show.
In his language arts class, they had book discussion groups in which they would read a novel, complete a set of journal entries (often about the characters' feelings and motivations), and then talk about the book, during which the teacher would evaluate the quality of their participation in the discussion. A kid with Asperger's can't do that easily, if at all. That kid has seized onto a particular set of details in the book, which they're happy to discuss at length, but oddly, nobody wants to talk about the life cycle of the common grasshopper when they can instead discuss how Laura Ingalls felt when the locusts were eating her family's crops. A kid with Asperger's doesn't necessarily know how to join in the flow of conversation. He sits on the edges waiting for a point of entry that never comes. so the teacher thinks that either he didn't read the book or didn't understand it, when nothing could be farther from the truth. He kept getting substandard ratings on these types of exercises, which told him he was stupid. This kid is many things, but stupid isn't one of them.
So far, 4th grade seems to be starting out better. We're meeting with Tweak's teachers and setting up a plan of accommodations, and it's helping already. For me, the biggest and most rewarding challenge has been to get into his amazing, quirky brain and try to figure out how he sees the world. I feel reassured that he's going to be fine in the long run, and that Vegas isn't his only option for making a living (though he would be very good at counting cards).
I did not anticipate being the parent of a Special Needs Child. Nobody does, I suppose, but for a lot of kids, it becomes obvious a lot sooner, so I'm catching up to where other autism moms are now, 5-6 years post diagnosis. I clearly have no idea what in the hell I'm doing, but I'm trying to understand. Most of all, I'm humbled by my son's ability to navigate a world with which he will always be somewhat out of tune, and by his patience with me as I've fumbled to get to a place where I can understand.
It has taken me 2 months to write this post, because it has required me to admit ways in which I failed my child, and that hurts. On the other hand, if I can reassure someone who's seeing the kinds of things I saw, I want to do that. Parental concern is a huge predictor of whether a child has issues. I dismissed my worries (and had them dismissed by others) for far too long. I should have trusted my gut and kept insisting. I'm glad I eventually did.