Several conversations hit my radar this week, conversations about behaviors when our Autistic kids hit puberty. It usually goes something like this "Suddenly my kid is defiant/ angry/ violent/ dismissive about doing everything. When I try to make a reinforcement schedule they ignore it. When I generate consequences to their behavior gets worse. I've tried everything and nothing is working."
And it's true. I thought I ran a pretty tight ship when Alex was young. I had my ABA and my RDI, OT, PCS's and my schedules and reinforcers, things get bumpy but progress was being made. Then we hit 7th grade. Alex started to look disinterested. We had to push harder to get him focused on his goals. When Alex earned his rewards he latched on and wouldn't let go, getting the iPAD back at the end of a 'break' was a small war, sometimes he just calmly ignored everything we said. Things felt like a constant tug-o-war and I was on the loosing end. We added more breaks, adjusted his schedule, made more detailed schedules, wrote social stories, added more valuable reinforcers and had weekly meetings but nothing changed. Alex wasn't motivated and it seemed like he was starting to hate school.
We made it through 8th grade by the skin of our teeth. I had weekly calls from school that Alex was having a rough day. I was constantly working with teachers, I felt like I was spending as much time in school as Alex. Nothing solved the problem, everything felt like bandages on a hemorrhaging wound. Was this puberty? Were we in the wrong classroom/ school? Was he in pain? Should I reconsider medications? All I had was questions and an unhappy kid.
High School started. Things went well for the first 3 months then the #$*& hit the fan. Sensory defensiveness, jumping, self-speak mixed in with huge mood swings, anger and a complete disinterest in participating. Again with the meetings, phone calls, plans, schedules and again with limited progress. Then Alex did something I now find fascinating. He would ask to go to the bathroom during class, he would walk into a stall, lock himself in, sit, refuse to talk and refuse to come out. Nothing got him out and he refused to talk to anyone. The only thing that got him to come out? I said that if Alex came out and did 10 minutes of homework I would take him home. Coming home became the most powerful reinforcer I had to get him to go to school. This was crazy. What was going on?
I looked for anything written by adults with Autism. Maybe there was an answer there. What I read really shook me up. I spent a lot of time digging through the Ballasteistenz blog. It's a difficult blog to read, equal parts terrifying and beautiful, she gave me a challenging perspective. She reminded me that there is a fully formed person under Alex's Autism, that Alex is communicating with me all the time, that behaviors ARE communication. If I'm going to label certain behaviors as unacceptable I run the risk of ignoring (or worse punishing) what he's trying to tell me. If your typical kid told you he was depressed or hated school you wouldn't threaten to take his DVD for telling you. You wouldn't explain that depression is an unacceptable behavior. You would look at his environment and see what needed to be changed.
Understanding Alex's communication is like constantly learning a new language. I'm fluent in Alex speak from ages 2-10. I'm good at ages 11-14. I'd say I'm a solid intermediate at age 15. Now that he's creeping towards 17? I'd give myself a hard beginner. It's not really that different from how I feel about communicating with my typical daughters, each year they want to be treated differently, sometimes very differently. But the girls can tell me what they want, loudly and in detail. Alex needs more deciphering. Sometimes the only way to figure it out is to toss everything out the window and start from scratch. At least Alex knows I'm trying to listen.