As a former Inclusion Specialist with an emphasis on behavioral therapy for children with autism I was well versed in the signs to look for when I had my own children. Though at that time they seemed to have a defined and distinct description for Autism and Asperger's Syndrome. Basically, a child with autism was non-social, sometimes non-verbal, not affectionate, had many self-stimming behaviors (ie flapping hands, making nonsensical noises, etc). Children with Asperger's Syndrome were gifted in some way, had lots of social skill issues, were also non affectionate and really kept to themselves.
When my first son was born he had all his fingers and toes and as he developed everything was early or right on schedule. He had quite the vocabulary for a little guy and was always curious and creative. As he got older and started school I noticed there were some things that were a little "off" compared to his peers. His teacher's always praised him as being a model student, but as he grew I was noticing more gaps with his peers. He had always had trouble regulating his emotions, but I started to see other issues in regards to social skills, food aversion and executive functioning skills. At this time I reached out to the doctor for an evaluation, even though the doctor didn't ever mention concern she complied. So just before his tenth birthday I took his for an evaluation and he was diagnosed with ASD (autism spectrum disorder).
Was I in shock? Not really because my mother's intuition and educational background knew already that there would be a diagnosis. Even though compared to the old touchstones of the diagnosis there wasn't a place he fit. The year my son was born in 2013 they had retired the term Asperger's Syndrome and began the diagnosis ASD level 1. How appropriate that they now see it as a true spectrum with levels, but the resources didn't seem to catch up. I was frustrated that a lot of tools I had used as a teacher weren't working with my own son. So now braced with a diagnosis I reached out to the school and regional center to find resources to help my son.
Although I knew he wouldn't qualify for services through the school I wanted to follow the appropriate protocol. My insurance offered occupational therapy, physical therapy and behavioral therapy, but they were pretty generalized. My son did a few rounds of OT and then was dismissed, he didn't qualify for PT through them even though the evaluator suggested other places he could work on the things he needed and finally the behavioral therapy really only catered to two camps. My son cried when going and finally he said, "I'm not like them, but I know the kids at school think I'm weird so I'm not like them either." This is when I knew we were lost on the spectrum.
Even as a mom I felt lost, the support groups were also for two camps and nowhere in between. I continue to struggle to find the right supports where my son feels comfortable, but is progressing. I know he isn't ready for middle school socially or organizationally, but he doesn't qualify for any services besides a 504 plan. As it is autism awareness month I felt compelled to let you know you are not alone and I am trying to figure out how to get it right for those who don't fit into any camp, but are just who they are and who we love.
