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Growing up with Autism without a Diagnosis

When I was born in 1981, autism was not a well-known condition. A few people were known to have it such as Temple Grandin, but it was largely unknown. This did not mean though that people didn’t have it or that autism became prevalent in more recent times. The knowledge, awareness, and research simply was not there. This blog will explain life from the point of view of an undiagnosed person with autism up through sixth grade. I received my diagnosis as an adult in 2008 when I was twenty-seven years old. Though I had challenges, life felt carefree to me until eighth grade when differences between my peers and me really started to stand out.

I am a high-functioning person with autism. When I was growing up, it was obvious to people like my parents that something was different, but nobody knew what it was—not even my doctors! I had sound sensitivity for one thing. For the most part I did not like music when I was very young. I became upset if my parents played music in the car. With the exception of Sesame Street, I didn’t watch much of children’s television programing. An example of something that I did watch was videos about electricity. My dad was expected to teach some people at work about electricity but knew little himself, so he was given video-tapes to watch. They featured a man giving a lecture. No music, no visual effects—just a man talking about electricity. Though I didn’t understand what he was talking about, I enjoyed watching these tapes. Eventually, I started listening to Sesame Street music, then video game music, and then in early 1994, I found country music on the school bus. As for TV shows, later in my childhood I found Chip ‘N’ DaleRescue Rangers, Ducktales, Talespin, Teenage Mutant Ninja Turtles, Super Mario Bros. TV shows and more. Sound sensitivity still goes on to this day, and I do not like loud environments.

By June of 1985 I developed another issue, asthma. Due to a recommendation, we went to an Asthma Doctor whose office was in a long building on George Street in York. The first appointments involved allergy testing (which involved a lot of needles) and then weekly allergy shots. Most people don’t like getting shots. For young children who would have a lack of understanding, it would be harder. I had a unique strategy. Since I loved numbers, I counted as the needles went in for the tests. I also paid attention to the building I was in. When a person first went into the building, he/she entered a long hallway with a number of doors on the right-hand side. At the very end was a large letter “W” hanging on the wall which caught my attention as “W” was my favorite letter. Once inside the office there was a number of exam rooms a patient could be taken into. Each room was fitted with different colored couches with black embroidered stars along the edges. I liked the green couch.

After the appointment, we would then go to the West Manchester Mall so I could pick an inexpensive toy. The West Manchester Mall had two claims to fame for me. We would enter the mall using a door that led to a small hall that contained a McDonald’s (my favorite restaurant at the time), followed by a few other stores. We entered the main part of the mall across from the Hardees they had. The mall also resembled the Chambersburg Mall on the outside, only with the anchor stores in reverse. This feature I noticed when my family was traveling on U.S. 30.

Asthma, besides being a major health problem, caused other issues. I had trouble recognizing how bad the asthma was when I was young. Sometimes I needed the Emergency Room for a nebulizer treatment, other times I would feel better simply by having my parents drive me around to distract me. I also was allergic to about everything they tested for. This included my favorite animal—cats. The doctor didn’t even want me to have plush cats which are dust magnets, since I was also allergic to dust. The rubber animals they suggested weren’t a good substitution! I had plush cats anyway, but I couldn’t sleep with them. Fortunately, and very surprisingly as mentioned in a previous blog, as an adult I recently lost my allergies to cats, which I find wonderful and amazing; a miracle in my life!

At the beginning of February, 1986, my brother Dave was born. I had difficulties with the shift of attention to him. I said that I wanted to “put on little hands and feet” and take off my “big” ones. Around the same time at the Bonton Department store, I found a big display of a sheet set and comforter that I liked. It featured the letters of the alphabet with pictures of things that started with each letter. The letter “W” for example was green, and showed a picture of a wagon. The letter G” showed a giraffe, etc. As a “pick-me-up” gift, I received the comforter from this set in early 1986. The matching sheets and pillow case set showed up as an Easter gift the same year. Once Dave grew a little older so that I could play with him, he became my best friend. I still consider him to be my best friend to this day. Now he lives 8,000 miles away in Taiwan, and I communicate regularly with him on Line (similar to Skype).

The most unique difficulties I found with having a brother as a child were when he got toys that were green. I didn’t understand why in some case Dave and I could have similar toys (other than size), but his contained green pieces and mine did not. Good examples include Legos vs Duplos (Legos did not come in green at the time, but Duplos did), and the Tough Toy Alphabet/Number sets. I had a Tough Toy Alphabet I received as a gift, years earlier and the colors of the letters were red, yellow, and blue. Dave received the same set in numbers, and some of the numbers were green. In reality, it was the luck of the draw the way it turned out, but I always wanted to have the things that were green, and found it difficult as a young child to let someone else have them. When it came to games, it was easy as Dave liked blue at the time. He always wanted to use the blue pawns (or game markers) and I wanted to use the green ones. Since they were different pieces, no issue.

One set of interests I had from a young age was roads, road signs and railroad tracks. I had my favorite roads, which were typically the roads that went to places that I found exciting. I liked going to York so I could get my toy every week (even though I did have a few seconds of pain from an allergy shot). I also enjoyed traveling to Hanover to go to the mall there as well as the toy store, Kiddie City. An interesting choice was that I liked the half-cloverleaf interchange between Fisher Avenue and Interstate 81 in Lickdale. I found it interesting, seeing the Exxon and Mobil gas stations that we passed while heading towards I-81, appear at a distance as we went around the curve to merge onto the highway.

My favorite road signs were the Slippery When Wet sign and the Stop sign. In the mid-eighties, there were several Slippery When Wet signs around Biglerville on PA 234. I remember a large one with a plate with the words that was on Goodyear Road not far from friends of my parents. Most signs are gone now. Until recently I wondered why, but found the answer on the internet. Slippery When Wet signs are temporary signs placed on sections of roadways that are extra slippery when wet. Once the condition is fixed, the sign is to be removed causing these signs to appear and disappear in seemingly random locations.

Though Stop signs were at the end of most roads, a sign that caught my attention was a sign in a person’s front yard that I saw on the way to church. Years later, we got a stop sign on the edge of our property for the private road to the north of our house! I was very excited. We finally “had our own,” real stop sign.

As for railroad crossings, I liked the “bumpity-bump” sound made when crossing over them, as well as the cross-bucks shaped sign, since it looked like the letter “X”.

I had many varieties of toy road signs over the years. My parents made signs out of corrugated cardboard. Mom drew them with markers, and Dad cut them out with an Exacto knife. For my fifth birthday, I received large homemade painted wooden road signs, including a Slippery When Wet sign, two Stop signs and a “Speed Limit 9” sign (nine was my favorite number until 1993). They were used on my pretend roads in the basement. Years later my grandparents made my brother and me a set of small painted wooden signs to use with matchbox cars.

To be continued….

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