Living with Autism

April is Autism Awareness month, and April 2nd is Autism Awareness Day. In honor of Autism Awareness, I am going to tell you first hand what it is like living with Autism. 

What is Autism?

Autism is a developmental disability usually manifesting itself in childhood. It can cause various issues for the person who has it, including poor social and communication skills, as well as difficulty with relationships and self-regulation. There is no known cause for Autism. However, it is certain that vaccines do not cause Autism. Autism is evaluated on a spectrum, and people on the spectrum can be placed on different degrees on this type of scale. Many people on the low end of the spectrum are non-verbal and struggle with basic everyday life skills such as managing money, transportation, shopping, and self care activities. On the high end, formally called Asperger’s, people are verbal and tend to have high IQs. People on the high end have more trouble with social skills than life skills. 

Life on the Autism Spectrum

I was not diagnosed with Asperger’s until I was 33. A month after I was diagnosed, the writers of the DSM V changed the name from Asperger’s  to Autism Spectrum Disorder. I prefer the term Autism Spectrum Disorder (ASD) because the man after whom Asperger’s Syndrome was named was very evil. Hans Asperger’s was a Nazi doctor, a pediatrician, who performed experiments on children with disabilities and killed them after his experiments. Hans is the man who discovered and officially diagnosed Asperger’s. Until recently, it was unknown the role he had in these murders, which is why the name was only changed recently. 

As I said, I wasn’t diagnosed until I was an adult. However, I knew all my life that I was different somehow. I have always felt like I was an alien from outer space. As a child, I didn’t play like other children. When I would go to a friend’s house to play, inevitably, they would want to “play house.” However, I did not understand playing pretend; I never have. I would agree, and then–not knowing what to do–whoever I was playing with would end up telling me what to say, where to go, and what facial expressions to use. In hindsight, it’s interesting that everyone I played with never questioned why they had to tell me what to do; they just did it. 

In school, no one questioned anything either even though I had no coordination when it came to gym activities and continual meltdowns. A meltdown is different from a temper tantrum. They happen when I am on emotional overload. Unlike temper tantrums which children can control, meltdowns just happen. It is not for attention and cannot be controlled by the child or adult who is having one.  I break down and cry, sometimes people would (and still do) ask what is wrong, and I can’t always tell them. It’s not that I don’t want to; I get stuck for words sometimes, especially during a meltdown. Occasionally I have meltdowns with verbal outbursts where I feel I am being misunderstood and I am frustrated; however, my meltdowns primarily consist of crying and shutting down. To shut down means I freeze and can’t do anything. For example, this recently happened when I was taking my puppy, Duke, for a walk. Another dog attacked Duke, and I shut down. I didn’t know what to do, so I just stood there helpless. 

When many people hear the word Autism, they think of symptoms like the arm flapping and head banging on the wall. They often mistakenly believe that all people on the spectrum do these things, or that we all dislike being touched by other people. However, this is not the case because each person is affected in unique ways.  Stephen Shore accurately stated, “You’ve met one individual with Autism, you’ve met one individual with Autism.” It is important to recognize that individuals are impacted by this disease in different ways. I love being hugged, and I do not flap my arms. I do have hypersensitivity. I do not like fireworks as I cannot stand loud noises. I’m not too fond of police lights as they hurt my eyes. I also do not eat certain foods like tomatoes because I dislike how they feel in my mouth. 

Another characteristic that I have is Obsessive-Compulsive Disorder (OCD). I get very fixated on the things I really like. For example, “Cheers” is my favorite TV show, and I know almost every line from season one to season eleven. I had the Cheers trivia game and corrected mistakes on the game question cards. I even went so far as to write the producers of “Frasier” to tell them on an episode of “Cheers” Frasier said his father was dead. 

Those on the Autism Spectrum have different levels of intelligences. Some are non-verbal with lower IQs. Then some like myself are on the higher end. I graduated high school with a Regent diploma with honors. I have a bachelor’s degree and a graduate degree, and now I am currently working on my second graduate degree. 

Living with Autism has its downsides, but it also had its advantages for many people. If you know someone with Autism, do not assume anything but get to know them as an individual with Autism, not an Autistic individual.