Welcome to the blog! My story
Hi and welcome to Decoding My Autism! So glad you are here. As the title suggests and the site intro states, I'm autistic. Understanding the world and fitting into it were not easy for me growing up, and I didn't understand why. I knew I had autism, and along with that came challenges with communicating, navigating the world, understanding social interaction, and sensory issues. But I didn't understand why I had these challenges. I knew my brain was wired differently, but how specifically? I eventually started seeking out the answers to these questions, and piece by piece, I found them. And then I started sharing them. I started on Facebook, on my personal page, and then in Facebook groups for parents of autistic children. I found a ready and receptive audience grateful for my insights, so I created this site and blog as a better platform to help share them.
I didn't have the easiest start in life. I never crawled as a baby. My mid-brain (which helps control movement) was abnormally small, and the rest of my brain was larger to compensate. As a result, I had an abnormally large head - a head that was too large for my infant neck muscles to support. I couldn't lift my head up on the ground on my own, so I never crawled. I wasn't immobile, however. I still moved around, in a unique way I've never heard of or seen in anyone else. As my parents have described to me, I would lie on my back, and rotate my shoulder blades by moving my arms around in a motion that resembled flapping wings. Doing this I would move myself around the room, following after my older siblings, scooting myself along the floor - head first.
When I was two, I was diagnosed by Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS). I had yet to crawl, and hadn't yet learned to stand or walk. I was treated by an occupational therapist who was of the professional opinion that if I was brought to the developmental level I was supposed to be, it would set everything right. So they placed me with a walker and taught me to stand and walk. The challenge is that simply catching a two-year-old up to walking doesn't fix everything. I had skipped the crawling stage. Crawling develops some important pathways in the brain, including hand-eye coordination. Mine was terrible for the longest time. I couldn't throw or catch things well until I was in my 20s.
I had trouble fitting in socially, because I didn't know how to interact. As I got older, and the social interactions expected of me got more complex, I fell further and further behind. I remember in fifth grade, I made friends on the school bus with two kindergartners because they were closer to my level of social ability, and so I felt more comfortable with them than with my peers.
When I was little, Autism had made into the psychiatric handbooks, but high-functioning autism and Aspergers were relatively unknown. Aspergers syndrome didn't make it into the handbooks until I was 8 years old. No one knew what to make of me. When I was 11, a psychiatrist said, "I've never seen anyone quite like Dan, but maybe ADD medication will help". Spoiler alert, it didn't, because I don't have ADD. Some autistics do have ADHD as well, but that wasn't the case for me. I was first put on Ritalin, and when that didn't help I was put on Dexedrine. When I was 11, my mom realized what I had was Asperger's Syndrome. Needless to say, they took me off Dexedrine and stopped taking me to that psychiatrist.
Finishing elementary school and moving on to middle school was a disaster for me. Middle school is much more complex to navigate than elementary school, going from a class that did everything together and shepherded by a teacher, to dealing with a locker, interacting with other kids in the hallway, different classes that I was expected to get to on my own, and differing class schedules depending on the day of the week. My grades plummeted. So, halfway through the sixth grade, my parents decided to homeschool me. My mother was a stay-at-home mom and gratefully they had the resources to be able to do so. When I left school for Christmas break, I cleaned out my locker, went home, and never went back to public grade school.
My mom was my greatest friend and ally growing up. As mentioned before, she was the one who figured out I had autism. She was my teacher for middle school and high school. She understood me like no one else did, and she was like my interpreter for the world. She explained things to me socially that I didn't understand, and she helped explain to others what I meant when I didn't know how to communicate it properly.
With homeschooling, and the right help and resources, I thrived. I was able to succeed in college, first studying Engineering, and then switching to English when I realized that Engineering wasn't the right fit for me. I eventually earned an English degree, with emphasis in Professional Writing, graduating Summa Cum Laude.
It wasn't all upward progress, though. Autism still presented its challenges for me. I got married at 23 and moved to another state, but prior to marriage I had never lived on my own. I had never truly learned to take care of myself. So the burden of my care fell on my wife. She hadn't known when we got married what challenges I faced or what support I needed, and she wasn't prepared for it. Exhausted by taking care of everything and me, combined with other factors I won't go into, my first marriage fell apart after 5 years.
After a trial separation and divorce, I was living on my own and finally learned to take care of myself out of necessity. Happily, now able to be truly independent and take care of myself, I have since remarried to a wonderful woman who better understands what remains of the challenges I face in life. I also better understand what my challenges and needs are, and we face them and work on them together. I have a full-time employment in a job I find meaningful, and even lead a small team of people.
I hope that through this blog I'm able to share the things that I have learned along the way, in hopes that it will help parents and caregivers of autistic children better understand what is going on in what can be a confusing and frustrating condition. I hope to share the techniques and insights that I have developed over time that have helped make my life and managing my autism much easier. If I can make life easier for even one family through doing so, it will all have been worth it.