‘On the Spectrum’: A Story About Autism and Me
I’m learning to live a successful life as an adult with autism.
You might think that I’m normal when we meet. But if you get to know me better, my behavior as a result of autism might change your mind. I was diagnosed when I was 4. However, I did not know that until last year. Now, at age 47, I’m learning to manage it for the first time.
The autism diagnosis came as a surprise until the pieces began to fall together. It was disregarded in my childhood, so I never got early support. As a result, sometimes my coping strategies have hurt other people because my thinking was irrational, or I was afraid.
Meanwhile, I’m learning why treatments for various illnesses and other disorders have failed. The image above shows some conditions that can co-occur with autism. Yet, my autism diagnosis has slipped by many doctors who couldn’t figure me out. Prescription treatments for anxiety and depression and counseling for managing anger simply didn’t cut it. Some medical problems, such as gastrointestinal issues, also may have been misdiagnosed. My stomach issues have left doctors scratching their heads since I was 6. I also had epilepsy as a teen and still have sleep issues as an adult.
So, in this and upcoming blogs, I will talk about how autism has affected me as someone who didn’t know that he had it until adulthood. I will also talk about what I’m doing about it, and how I’m trying to live a more enjoyable life as an adult with autism.
Reflecting with New Understanding
Autism is not the reason for every bad decision I’ve ever made. I am different, but I also have adopted bad strategies to help me cope with the rest of the world. There are things that I have done all my life that I have had to re-examine after discovering that I have it. For example, I know that I interrupt people and will answer a question meant for someone else, even when that person could answer. Despite being almost hyper observant, I also will miss the body language and social cues that might tell me that I’m being rude.
But my behaviors can be worse. My autism affects the way I interact with other people, so I am in more situations where I’m not getting along with someone. In fact, I can be aggressive if I think you are cornering me. I used to avoid confrontation because I was too nervous to say or do anything. But now, if someone is mean or I think that person is going to hurt me, I am prepared to fight. I might do or say demeaning or socially inappropriate things. Sometimes I am just nonsensical. In extreme situations, I might push someone away, try to pull that person back toward me, or try to take something out of someone’s hands.
Finding my Place on the Autism Spectrum
These behaviors are not unique to me, but they are uncommon. Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by challenges in social interaction, communication, and the presence of restricted, repetitive behaviors and interests. Autistic people are born autistic and will always be autistic. The severity and symptoms of autism can vary widely among individuals, which has led to the term “spectrum.” The cause of autism is not known. When ASD is caught early and a child gets the benefit of support, then the outcome is better for that person as an autistic adult.
Some people say neurodivergent, but it has become trendy for people to use that word just to say they are weird. Weirdness is not autism. Moreover, you must establish neurotypical before you can say neurodivergent. This is like setting a standard for normal. It is necessary for benchmarking purposes, but that is it. Furthermore, the needle on that benchmark keeps going up. I’m on my own divergence, but not necessarily neurodivergence. I’m not trying to be different. Some people embrace their autism and I respect that. But I don’t want to feel this way. I’m not just “on the spectrum.” I have a developmental disorder.
Many of my stories are unique and some have become legendary. These stories show many different shades of autism. Some of those stories are below, while you can find others here.
Surprises that Went Boingashmeer
People who are like me think, see, act, and communicate in ways that neurotypical (“normal”) people do not. For instance, I’m sensitive to lights and sounds. When I was a kid in the 1980s, the fluorescent lights in department stores made me sick. In Gee Bee and Kmart, which were the names of two popular discount department stores at the time, my mom would have to stop shopping so I could sit in the aisle and put my head down.
Surprises, even good ones, can ruin my day. On a Christmas Eve many years ago, I was unwrapping presents with my girlfriend. She had bought me a nice toolset. Then, she wrapped each tool individually. I couldn’t handle it. It was too unexpected and too different. I was so upset about the wrapping that I had to return it. Not only do I feel sorry for taking it back, but I also hate my reaction. My girlfriend was hurt, and I was not nice. She had gone through a lot of effort to make it special, and I couldn’t find the joy.
My girlfriend was hurt, and I was not nice. She had gone through a lot of effort to make it special, and I couldn’t find the joy.
I’m binary, so everything is black and white, and the unknown is never OK with me. Sometimes I get highly focused on one thing to the point of obsession, like trying to find my great-great grandfather. But I can’t focus on the people and things around me that I should be paying attention to. When I was young, I even invented my own language, so I was the only one who understood me. I know what the many different kinds of shmeers are and what they all mean.
Thinking Back
It’s hard to know how support for my autism might have made things different. During my toddler years, a psychiatrist diagnosed me with “infantile autism.” But I also scored a high IQ, and the doctor said I was “gifted.” What it really means is that, developmentally, I was far above average in some ways and well below in others. Because giftedness can mask autism, it can be difficult for anyone to recognize and support both.
Mine might have been challenging. The psychiatrist who prepared my report said that I would say “I don’t know” in a sing-song voice during my testing. He said I would do that just to avoid another question, and even if he was certain that I knew the answer. His recommendation was to enroll me in programs for special education and the gifted. Today, they would have created an Independent Education Program (IEP) to help me succeed.
That didn’t happen. Instead, I went to two Catholic schools for elementary and a prep school for junior high where those services were not available. As far as I know, none knew about my diagnosis. I didn’t know, either. The first time I learned was in 2023 when I was cleaning out old paperwork at my parents’ house. After consulting with my doctor, I am now receiving medical treatment for depression and anxiety and therapy for autism and co-occuring disorders. While I can’t blame autism for every bad thing that has happened to me, I think that it made bad things worse.
What Might Have Been
From my perspective, I haven’t been successful. In fact, I think that I have failed at many things, but I also think that can change. I doubt that a neurotypical person would understand that the diagnosis of autism, and more so autism and giftedness, is a relief. I know that I’m different and that is OK. What is not OK is the way that I have treated other people. Now, there may be something I can do to improve my interactions with others while still being me, and live a better and happier life.
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