I remember the first time I saw my nephew, from behind the window in the nursery at the hospital. He was so small and fragile, but so perfect in every way. I loved him from the first moment I laid eyes on him and as he has grown we have been close. Even today, if I see him from afar, he will scream at the top of his lungs, “Uncle Matt” and then come running to give me a hug.
When he was just a couple of months old, I took care of him for a night so that his parents could have a night out. He had such a cute smile and an inquisitive look on his face even at that age. I knew that this kid was going to be something special, but I never realized the role that he would play in my own life.
Things took a downward turn when he was around a year old. My nephew seemed to not be developing at the rate that one would expect a boy his age to progress. At first doctors believed that he might suffer from some form of hearing loss, since he wouldn’t turn towards you if you were speaking to him. They ran a bunch of tests and could find nothing wrong with his ears, at least nothing physically wrong. He could hear it just seemed like his attention was always on something other than the person trying to get his attention.
By two he still hadn’t really began talking much. I’m very proud to say that the first two words that he put together were “Uncle” and “Matt”, but outside of that he could use a few simple words but definitely not the vocabulary of other children his age. He would also throw horrible fits with no apparent cause, failed to speak when spoken to and would fight making eye contact vigorously.
“I knew that this kid was going to be something special, but I never realized the role that he would play in my own life.”
By three he had began talking more but was showing some visible and verbal tics which was a cause for concern of his parents. He didn’t really play with his toys but would spend time lining them up or sorting them. He loved trains and we spent a lot of time watching Thomas the Train together any time I was around him. He wanted you to watch with him but not talk, talking while it was on could throw him into another fit.
I began doing my own research, as I do when something bothers me, and found many of his symptoms were related to autism. At first his parents were insulted but they did take him to the doctor and have him checked out. The doctor sent him on to a specialist and after a couple of sessions, the specialist gave his diagnosis: Moderate Autism.
I felt bad for my brother and sister-in-law, but worse for my nephew. I knew how cruel the world could be for someone who was “normal” like me and I decided to spend huge amounts of time looking up information, finding ways to communicate better with my nephew and ways that I might be able to help him avoid some of the bullying that I had experienced. I knew he was going to have to be tough in order to face the world as I had and so by looking up this stuff, I could give it to my brother and sister-in-law so that they might help him as well.
I was thrown way back to a time when I would wake up early, sneak into the kitchen and spend time playing in my mothers cabinets, sorting and stacking.
One day something clicked, I was watching my nephew stack things according to size shape, or just in a line making a train with them. I was thrown way back to a time when I would wake up early, sneak into the kitchen and spend time playing in my mothers cabinets, sorting and stacking. I then remembered my sticker collection, it was my favorite thing for several years as a child. I never used the stickers, never once did I put any of them on anything, all I did with them was sort them in various ways; size, shape, color, etc…
I walked over and sat down beside my nephew. He kept playing, making loud “Choo-Choo” sounds as he built his train. When he wasn’t looking I switched out two of the pieces of the train, taking them out-of-order. When he looked back he instantly yelled, “NO!” He then went directly to the pieces that I had moved and put them back in the order that they been in before I had moved them.
My mind began to make connections, I saw much of myself in this small child with a few major exceptions. The similarities were his tantrums, getting easily overwhelmed, his stacking and sorting habit, his dislike of anyone new, and his seeming inability to make eye contact. The last one had actually struck me earlier, when it had first been mentioned before he had even gotten his diagnosis. When I had been a small child, I had gotten in trouble from teachers for not paying attention to me, and several had spoken to my parents about the fact that I didn’t make eye contact. One of my worst childhood memories is of a teacher grabbing me by the face and forcefully turning my head with both hands, making me look at her directly in the eyes. It terrified me then and still gives me chills today. Today I do a pretty good job at faking eye contact, looking at someone’s forehead or teeth instead of their eyes has been my technique and people only rarely notice. Lastly, in the similarities, we both hated being touched, especially when we aren’t ready for it.
The exceptions were that I had been highly verbal at a very young age, I had never had trouble communicating with family and only had communication issues with those outside my family. Learning had come easy to me, for those things I was interested in, and had been considered gifted during my early years of school. Only when I got to the age that certain subjects really bothered me, or were advanced enough that I struggled to teach myself how to do them, did some consider me to have a slight learning disability. While I had displayed some tics as a child, flapping my hands when excited and spinning in circles, I had gotten in trouble for doing them so often that I had forced myself to stop. I still fidget constantly, but at the time didn’t see this as anything out of the ordinary.
My life at the time of these discoveries wasn’t the best and so I basically considered it as something interesting that I could look into at a later date. Several years later though, on the cusp of my second divorce, after leaving the ministry, did I remember these issues. My nephew has grown and has developed quite a bit, his vocabulary is much better, he is intensely into video games, and even considered gifted in math and science at school. Sadly, he is bullied almost constantly by certain kids and absolutely hates school. When my mother mentioned that he throws a tantrum every morning and cries his eyes out before he goes to school, another click occurred in my brain. It was just like me at his age. Around this same point I had begun watching “Parenthood” which features a male child with Aspergers, and an adult that comes to realize he has Asperger’s through interaction with the child. It was as if I was watching my own life on screen.
I went home and began researching autism. I google searched “different types of autism” and found links describing the spectrum and how different those people on the spectrum can be from one another. I found an article about Aspergers Syndrome and, as I read through the symptoms, it was as if I was reading something written specifically with me in mind. One of the things that really hit me discussed sensory issues and overloads. I had experienced this my entire life without ever having a name to put to it. It’s an awful experience and something that I can’t really be described in a good way. When people ask me what it is like, I tell them, it is like every one of my senses experiencing the feeling of nails on a chalkboard.
At the bottom of the article there was a link to a quiz which I followed and took. It was an Autism Quotient quiz and I scored 45 out of 50, very high likelihood of autism. I took several other quizzes from various sources, and each one I landed in the very high likelihood range for autism. A new idea began to come into my mind, this is me…
My head swam with all of this new information. Everything suddenly made complete and perfect sense. All of the struggles, all of the bullying, all the times I had people pray over me to rid me of my shyness, and heartache I had experienced swirled around this fact that had remained hidden from me for so long, I had autism. I knew that my autism wasn’t quite the same as my nephews but that’s what it was. The only problem in my mind was what do I now do with this information?
Several sites that I found spoke of self diagnosis. This is where someone decides, through their own research and life experience, that they have autism and are happy to live out their life without ever getting a diagnosis. This worked for me for well over a year. I hated the idea of going to a psychiatrist or a psychologist. This stems from both my hatred of meeting and talking with new people and the fact that I had been raised to believe psychiatry was, more or less, evil. So I would self diagnose and be happy with that for the next couple of years…
To continue on to part 3 of the epilogue, click here.