It doesn’t seem as long as it has been since we first received the diagnosis. At the time, it seemed like just a word. Not an overly daunting word, and certainly much better than some other words we could have heard, sitting in front of the pediatric neurologist. I could have thought of a million words that were worse. Cancer, cerebral palsy, mental retardation, neural tube defect, and Fragile X (just to name a few) were among the many that I poured through the internet researching when I noticed that he was non-verbal and self-injurious. Autism was not life threatening, at least.
For a while, before he began receiving therapy, and even for a short time after, it was scary. Being non-verbal made it difficult for him to express himself. We’d spend many days thwarting run-aways, head banging, screaming, and crying. It was heartbreaking how you could tell he needed to say something, wanted to understand us, wanted us to understand him, but the words would get caught in a seemingly impenetrable barrier. I’d watch him try to process and sometimes, it just got to be too much.
Ever hear the expression “clear as mud?” I imagine that’s how our words were to him. They’d roll so easily off our tongue in fluid, crystal clear waves of language, and land on his head in glops of muddy quicksand that threatened to swallow him whole. I could see it on his face when he’d begin to suffocate. If I didn’t catch it in time, he’d find the nearest object and beat his head against it.
More than the tantrums, more than the crying and screaming and elopement, more than his inability to say “I love you,” this broke my heart the most. I hated to see him suffering. The worst aspect of Autism by far was his pain. And I knew it didn’t end when his head stopped crashing against something.
“(our words would) roll so easily off our tongue…and land on his head in glops of muddy quicksand that threatened to swallow him whole.”
Once I understood the dynamics of his diagnosis, it was only a matter of feeling out his peculiarities, defining his nuances and stepping into his world. Slowly, he came into his own and was able to communicate. At age 5, he had finally progressed to full sentences at a time. It was glorious! He stopped running. He stopped banging his head. He finally told me, “I love you.” He was even starting to socialize with other children. Things seemed better.
He turned 10 this month, and it seems we have come full circle. In a matter of five years, I’ve seen amazing progress and huge regression. In recent months he’s begun to bang his head again, talk about hurting himself, he is riddled with anxiety and low self-esteem and is wanting to be alone more.
As someone who suffers from depression, anxiety and self-worth issues, I immediately placed the blame on myself. “What was I doing wrong?” But then it dawned on me! I’m discovering this untold, inexplicably scary aspect of Autism that I never gave much thought to. Puberty!
“I’m discovering this untold, inexplicably scary aspect of Autism that I never gave much thought to.”
Puberty is difficult for the neurotypical individual. I mean, what person has ever endured puberty and completely understood what the hell was going on? I can’t even imagine how it could affect someone with sensory issues, social anxieties, and communication problems. During his early years when the self-injury was most prominent, he had a lot of trouble communicating. He needed to understand and be understood. As soon as he did, there were quantifiable improvements in his demeanor. At this age, he is probably beginning to feel things he doesn’t understand. He’s once again back in that place of utter frustration, coupled with hormonal imbalance.
Having realized this, I immediately began to do some research. With his two older sisters, I dragged my feet on giving “the talk” but after much reading, I’m finding that with him, having that “birds and bees” convo should come sooner rather than later. (I’m still dragging my feet, though.) I struggle with how he will receive it, how much information he can absorb, if he will act inappropriately in social situations, etc. However, I know that for Autistics like Seth, communication is key. I’m hoping with a little knowledge by his side that he’ll be able to redefine and re-explore his emotional comprehension.
(Side note: For any parent currently struggling with the same questions/issues, there are a lot of great websites that deal with Autistic specific puberty questions. I will add links at the bottom for sites I found most helpful.)
I think we’re going to have to go back to the basics with a twist as we roll through the pubescent age. We’re going to have to build trust at a different level, communicate on a different level, and dive back into his world to help him reemerge as a confident, balanced pre-teen. I realize that there will be highs and lows, moments of crying my eyes out and moments of pride so consuming that my heart could burst. There will definitely be moments of awkwardness and embarrassment. I just hope that along with the frustration of pre-teen angst, there will be some breakthroughs in therapy that enable him to rise above his limitations and show us that he’ll make it. That he’ll always make it.
Now for those websites I promised:
For what to expect: http://www.tacanow.org/family-resources/teens-with-asd-puberty/
Autism Speaks Toolkit: https://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit/health
An all encompassing PDF booklet for parents and teens: http://autismsocietyoregon.org/files/9114/2230/9538/autism-spectrum-disorder.184122715.pdf
I’m still doing some research on books that can be a good visual aid accompaniment, especially since my son is such a visual learner. I’ll update here when I find some good ones to recommend. Wish me luck!