Most of what I want to write about right now has to do with my older kids, but it’s my personal rule that I don’t write about them here, partly because I want to protect their privacy but mostly because I think they would be really mad to be blog fodder. I’ve also written and discarded a draft of a different post on how much I hate decorating my house for Christmas (I know, I’m a grinch, but it just makes me grouchy to be in charge of Making Things Look Good even in a seasonal capacity).
Which brings me to another topic I’ve been pondering lately: my seven year old. Seven is nearly too old to write about, but I want to anyway, because he was recently diagnosed as being on the autism spectrum and I’m really at a loss. The news did not come as a surprise, but I still have so many questions.
He is high functioning (do people within the spectrum community say that? is that a thing with them/us too? what is the correct way to refer to someone on the spectrum who can go to regular school and doesn’t need as many services? or maybe he does; I haven’t figured out yet what’s even available.). He’s also always been quirky, with a deep need to follow a structure and also have other people follow it. I’ve often had a hard time explaining my reasoning to him or understanding what he’s trying to tell me. When he’s fixated on a certain thing, he cannot be moved. And his first grade teacher told me that the way she figured him out was by treating him just like her little brother who has Asperger’s (do we still say Asperger’s even though it’s not used as a diagnostic term anymore?).
The psychologist also thinks he has alexithymia, which is the inability to put words around emotions. Physical sensations tell people with alexithymia what they’re feeling, instead of the other way around. So, for instance, instead of saying “I’m mad, therefore I’m kicking you,” it’s “I’m kicking you, therefore I must be mad.” She recommended a group social skills class (I have yet to find one for his age; I need to keep looking) and individual therapy because of the way he puts himself down constantly when he fails to read the cues that other people get.
I’ve read the amazing writing by Megan on tooursurvival.com, and other stories online, and I know I’m not in the same league as far as autism parenting goes. I’m on the fringes of the club, not the deep trenches. So many online resources and stories seem geared to those trenches, and heaven knows I do not begrudge anyone that kind of support.
I’m still trying to figure out answers for my own son, though: what does he need, my Monopoly and Harry Potter obsessed child, who talks too loudly and rambles when giving answers in Primary, unable to read the cues that he’s been speaking for way too long? How do I help him to relax when he’s obsessed with something that just.can’t.happen. right now? How do I get him to understand his own feelings, much less anyone else’s?
And what happens now? Do I tell him about what he has? How do I tell it to him? I see a diagnosis as a useful tool, something to help me figure out my enigmatic child and know what he needs to be successful. But the spectrum is just that: a wide range of people, and I don’t know where to locate my son. Or myself.
Do you have experience with parenting autistic kids? What advice and resources do you have for someone who’s on the fringes of the autism parenting club? Any favorite books? Favorite websites or Facebook groups? Thank you in advance.
And now I need to go decorate something. Seven year old is really, really bothered that it’s December 7 and our tree isn’t up yet.