By Beth Ann
I have 17-year-old son. He is bright, creative and talented. In fact, the artwork on this blog site's home page is an original by Will. He is also transgender and autistic. He suffers from anxiety, depression on and off, and probable PTSD. He struggles with self-esteem and body dysmorphia. Every aspect of his life and every relationship has somehow been impacted by his conditions. I first started thinking about this blog two years ago. Will, my son, had been hospitalized following a self-harming episode. He told me immediately after, frightened by his own impulsivity. After a night in the ER, he was transferred to a mental health hospital three hours away in the morning.
At the time Will was hospitalized, I was a corporate executive with dreams of doing something with my creative interests. I spent 32 years cultivating specific skills and helping companies achieve their goals. But eventually, I felt unfulfilled. And I felt preoccupied with the health conditions of our kids, particularly Will. I began to think of sharing our experiences broadly because of the extreme loneliness and isolation we felt as the parents of a kid that many people deemed “difficult.” I'm very lucky that I had the financial means to leave my corporate career and focus more on my family. I prepared by diligently socking cash away for two years. While letting go of my salary was scary, I told myself I could always go back to the business world if I needed to. For now, I'm interested in sharing information about our family and creating a community of support for families like ours.
Will was diagnosed with ADHD at seven. He was smart but struggled behaviorally. We even had another parent pressure the administration to kick Will out of the private school he attended. So, we ventured down the road of medication and behavioral therapy to treat his condition. As it turns out, the diagnosis of ADHD was incorrect. Last year, our family therapist suggested we get a full psychological evaluation. We did. It turns out Will does have depression/anxiety and probable PTSD from two traumatic experiences at school. The most illuminating diagnosis, however, was that he has autism spectrum disorder (ASD).
Will is verbal and attends public school. However, so many things made sense as we educated ourselves about autism. The rocking and banging of his head since infancy we learned is a stimming behavior; something he does to calm and comfort himself, despite the damage sometimes to his body and his surroundings. His reaction to a change in something seemingly small, like when I try to make him a different brand of mac and cheese, is typical of autism. A change to his schedule or plans often elicits a strong reaction. Also typical for neurodivergent individuals is the fact that Will can hardly stand to be near us when we are eating because the chewing noises are like nails on a chalkboard to him. His lower empathy for others sometimes and inability to pick up on social queues, facial expressions and body language are also common. These symptoms led to very short-term friendships during elementary and middle school. We understand why, as life has gotten more demanding, he retreats to the solace of his room and sleeps excessively. He is trying to cope with what to him is overwhelming responsibility, emotional and sensory overload.
While it's frustrating that we spent years treating the wrong condition with minimal impact, I am still relieved to have the autism diagnosis. His progress in therapy had plateaued. My husband and I live in fear regarding how underprepared Will seems to be to go into the world as a self-sufficient adult. Now we have a new, accurate diagnosis. As we learn, we can better understand our son but more importantly, he can better understand himself. We can seek support with a therapist who has a background in ASD. His school can make adjustments to his 504 plan based on his diagnosis. With any luck, his progress in therapy and in life will be reignited. I have hope again.