After 5 months of steadily escalating behaviors and frustration, Alex had an evening where he was so upset I realized something was wrong, really wrong. He was wide eyed, in constant motion, verbalizing loudly and biting the end of the couch with a force that scared me. There were no triggers I could see, the house was quiet, he'd slept well the night before and the day had gone OK and we were having a really relaxed evening. But now he was beyond upset and I was terrified for him. For almost an hour he was inconsolable, he wanted me there but he wouldn't let me near him. I couldn't get him to communicate in any meaningful way, but it was obvious he was in serious distress. At one point I seriously considered going to the Emergency Room but I had no idea how I could get him there in this state. When it was over he was sweaty, exhausted and completely shut down. I knew was this was serious and I was scared, he was desperately trying to communicate something and I wasn't sure what it was.
I dug into my Facebook group ( PAM; Portland Autism Mom's, a fantastic resource) and started looking for information. A post about pain expressed as anger hit me in the face. "Always check teeth first!", the post said. I ran Alex to the dentist the next day and discovered that he had 4 impacted wisdom teeth pushing against his nerve. Suddenly all the behaviors over the last 5 months suddenly made sense. The sudden anger, biting blankets, clenching teeth, excess sleep and a desire to opt out of his day...it all made sense. The teeth needed to be pulled, the dentist told me. I was so relieved to know that I'd figured out what was going on. That was followed by a huge wave of guilt. The last 5 months of behaviors? It was probably increasing tooth pain. I mistook pain for general Autistic teenage behaviors. How did I get so far off track?
I consider myself an advocate, I'd like to think that I'm a good one but this shook me, I'd made a huge rookie mistake. I looked at a series of behaviors and concluded that they were, well..... 'behaviors', I wrote programs to try and navigate these 'behaviors', I changed his schedule to help accommodate the behaviors, what I didn't do was look at the behaviors as communication. Ultimately it prevented me from hearing what Alex was trying to say.
I think advocates can run the risk of a kind of arrogance . Because we're neuro-typical we believe we communicate better, problem solve better, possible know better. It's understandable how we get there, we're told early on that we are our childrens most valuable advocate and we have a community of people looking at us asking "What does your child need? What do you want us to do?". Our kids might have limited verbal skills, so we need find alternative ways to communicate. I now know that being neuro-typical can be a real disadvantage. Were looking at Autistic behavior through a 'typical' lens and it's a flawed perspective. In hindsight, Alex was spending lots of energy communicating and I just wasn't hearing him.
We made an appointment with the Oral Surgeon. It's a plus that Alex loves anything related to dentistry. We explained what was going to happen, watched some videos on YouTube (wow, who knew you could see videos of wisdom teeth being removed) and 2 weeks later he all but ran and jumped into the Oral Surgeon's chair. 45 minutes later we were on our way home. Alex hated the stitches in his gums immediately pulled them out. FYI, I'd recommend no stitches to any Autistic getting their teeth pulled... those little ends of the stitches are TOO much to take. I was panicked about the stitches being pulled out so we had the surgeon check him out the next day. Apparently stitches are optional in the healing process so that was good news. A week later he was almost up to speed and healing nicely.
And the frustration levels? Down, way down. Now that he's not in pain his old self has returned. All those motivational programs I wrote? I haven't used them in 2 weeks. His baseline of happiness has returned. I now realize it must have taken everything in him to navigate the nerve pain and move through his daily routine. And it definitely explains why he would fall into bed the first chance he could get.
It was a reality check to have made such a rookie mistake. I KNOW behavior is communication. I've stated this to others, overflowing with motherly confidence...'Behavior is Communication!' I've said over and over again. It makes me realize that I have to constantly evaluate what I'm thinking. I am not Autistic and I need to carry a healthy dose of self skepticism when I'm making decisions based on behaviors.