My son’s autism diagnosis took years of observation, multiple doctors, paperwork, and a variety of tests.
Both my husband and I knew that when our youngest son, J, started to show a language delay when he was a toddler that something was going on. We discussed it with his pediatrician. She referred us to a specialty pediatrician… you know, the ones that have extremely long waiting lists. Especially in the state of Idaho where the specialty pediatricians are scarce.
He gave us the all clear after spending a good amount of time with J and listening to our concerns. He observed his behavior and tried to get him to interact with him as much as possible.
At the time, his regular pediatrician told us that he has anxiety.
This made sense since I had battled with anxiety for many years. And you could tell by his level of shyness around not just strangers, but family and friends as well, that he was very anxious when he was outside of his comfort zone. She told us to comfort him, and keep him safe.
After the specialty pediatrician got J to come out of his shell, he told us that he thinks everything is ok, and that since the only true delay he is experiencing (language) that we would keep an eye on him and take action if we have any more concerns as time moves on. He was hesitant to diagnose J with autism, because of the lack of symptoms he had been experiencing.
I felt a little bit of a relief walking out of the doctor’s office that day… but I still wondered, what if he is on the spectrum? The whole outlook was to hurry up, wait, and observe. J had just turned 2 when we met his specialty pediatrician.
As weeks, months, and years passed, J started to exhibit more symptoms. They started to take more action when I pushed for answers. Another appointment was made with his specialty pediatrician after talking to his regular pediatrician. A few terms were being thrown around at that time; selective mutism, social anxiety disorder, autism.
When the specialty pediatrician saw him again, he was still on the fence about an autism diagnosis. It wasn’t until we met with a clinical psychologist (another doc with a long wait list) that we got the answers we had been looking for, after 2.5 years.
My son is on the autism spectrum. When his psychologist started picking apart the 15-page diagnoses, I felt overwhelmed. I had thought that before that moment if it was autism…. it wasn’t going to be severe. But it was a lot worse than what I had ever thought. My son did not fit into this mold. According to the diagnoses, he needed a lot of help.
The psychologist took her time to explain everything to us. It took a few hours to get through all of it. At the end of the appointment, I had a huge stack of papers with directions on how to apply for services, a list of books to read, and paragraph after paragraph about how to handle his diagnosis. From talking to neighbors to telling family members. There was a bit about providers that were available for services, and a pamphlet about a preschool program in our area.
After 2.5 years of wondering… here we were. My papers, a diagnosis, and no village. I needed to crumble before I could build. I’m doing that now. The world keeps spinning when diagnosis are given. I just wish it would stand still for a moment so I can catch my breath, even more so now because, through all of it, something looks very familiar. Through this journey, I think I have discovered that I myself am autistic.