Throughout my life, I have known that I was different from other kids. My brother was not like me, the kids in school were not like me. My parents were not like me. I was different and no one noticed. I had Asperger’s but it is so little understood that no one saw what was happening, they saw parts of the experience but failed to understand the extent of it. Asperger’s Disorder is a spectrum disorder that can and does affect each person differently, some people never even know they have it. Asperger’s is so poorly understood, even today, that depending on where you do your research you will find that some books claim 1 in 250 are on the spectrum while others claim as many as 1 in 54 (Autism Network, Autism Society). This is due in part to the general lack of understanding people have about this disorder. On top of that, this “syndrome” has been a part of the world for so long but was not first described by Viennese pediatrician Hans Asperger, “who observed autism-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development” (Autism Society).
I had all manner of small issues as a child that were written off as everything from hypochondria to ADHD, I had anger issues and I had communication issues, I even struggled to learn to draw basic shapes. I am 48 years old, and I still struggle with all of these things, even letters come slowly (if I want to be able to read them later).
Teachers did not know about people like me or understand how to interact with us in 1978, (I question how well they do even today based on my daughter’s experiences). By the 3rd grade I was labeled as “a loner’, and as a “special needs learner”, which meant that I spend half the 3rd grade in “special education” classes and all of the 4th through 9th. It was a pretty good deal for me, I was given booklets and told to read and answer, I was given books and asked to do reports on them, I was allowed to help other students in my “SE” classes to see things differently than the teachers taught, and it helped them to succeed. Basically, I was left alone and allowed to do what I wanted, though that may be in part because I wanted to read everything. I wonder what would have resulted if they had known, if they had understood who I was, how I was different. It is not that ASD people do not want or need social interaction, I would say we crave it even more so due to our inability to figure out how to have it, how to “fit in”.
My experiences are not unique, not within my family, not within my special little community, not among those peoples that, like me, are so often misunderstood and rarely appreciated for who they are, for their unique perspective. We are an incredible and diverse group scattered throughout all the nation’s populations, we are other, but we are the same.
There are many misconceptions about Asperger’s, now called Autism Spectrum Disorder level 1 or simply, ASD 1, that can be misinterpreted or outright off-putting to those around someone on the spectrum, even those that care for us. These misinterpretations can and do create more issues for someone on the spectrum.
Take for example my own childhood when in the 3rd grade, a teacher of mine and the school district’s psychologist decided that what was wrong with me was that I had ADHD. To their way of thinking this easily explained my repetitive behaviours; why he always taps his fingers or why he is usually bouncing one or both heels on the ground, as well as my seemingly constant staring out the window. The misunderstanding was ADHD, and the “cure” was Ritalin. They could not understand that I was staring out the window because I was thinking too much about the work in front of me, not daydreaming. Sometimes I find myself lost in consideration and possibility, finding and making perspectively “real” the information I was learning. I would often even role play to attempt to understand the specifics of the experience/ event/ belief that I was learning about, that I was considering. Something more interesting which further shows how little understanding these people had was that they felt it was necessary to intervene in this way when I was excelling in my studies, not failing.
Another common issue that someone on the spectrum faces in their everyday life is the idea that we can “be cured”, or that a child with ASD symptoms will “out-grow” them. This has multiple negative repercussions for the person in question, imagine being told that something about the way you think is broken when it is not. The first problem this sort of misunderstanding causes is that you are telling the child they are somehow “not right” but that someone can fix them, or we can fix ourselves “if you will only try”. Telling a child that they are “broken” is cruel, everyone is different and has different needs. Telling a developing mind this creates an environment within a child’s psyche where they begin questioning everything they do or say. Creating a space where the child questions their ability to do many things “normally”, constantly wondering if they are “doing it wrong”? Which, at the end of the day, is really just a type of social bullying; ‘because we are different from you, we must be wrong/ broken’. These children already have a great need to be “like” and liked by others, especially their perceived peers. To compound those feelings with the idea that they are abnormal is borderline abusive.
How many times have you heard someone ask you “what’s wrong with you” in your life? How many times were you just sitting and thinking when they asked? How many times have you been asked in direct response to how you reacted to some emotional stimuli or other whether positive or negative? This poisonous phrase is spoken all too often to the developing child; because a person designated ASD 1 tends to severely overthink everything in the need to understand. When you ask us what is wrong with us, we start to overthink and we begin shutting down. When you imply that there is something wrong with a person because they do not act like you (or like you expect) and that causes the person to also wonder, beginning a negative self-esteem cycle that can have lifelong effects. Worst of all is when someone says something like that to someone because they are not showing outward signs of the “correct” type. Emotional distress takes many different forms and affects everyone differently but when someone observes that a child does not cry at the end of Bambi, Old Yeller, or even E.T. and then implies to the child that they are different (in my case psychotic), it starts the child on a path of self-doubt and further adds to relationship/ interaction issues throughout the child’s life.
Autism and Asperger’s are spectrum disorders, which means that there is substantial variation among those who have ASD 3 versus those with ASD 1. Some people will go their whole lives never knowing that they are on the spectrum or suffering from any visible symptom, others will never have a moment in their life without wondering what is wrong with them or if they are doing it right? Without much more research our understanding of this complex syndrome may never be complete, but perhaps understanding “it” is not necessary. Perhaps it is just important that we watch and help, and where we can guide children into a future where acceptance and understanding are not ideals but instead the way we all think. Imagine a world where it would be okay if I missed social cues or failed to cry when everyone else was, a world where people would not call me an animal because I do not cry when they do. If we can accept all of you and your constant demands on our thinking and way of feeling, perhaps you can allow for our choosing to think about something intellectually instead of emotionally? Perhaps you can allow us to express ourselves as we see fit and not judge us for not doing things the way you do. Being “emotionally or socially stunted” (underdeveloped) should not be viewed as a failure in a human, just a difference, a difference that when celebrated and supported has the potential to develop into the next Tesla, Einstein, or even Musk.
Works Cited
“Asperger Profiles: Prevalence.” The Asperger / Autism Network (AANE), Autism Network, 25 Aug. 2016, www.aane.org/prevalence/.
“Facts and Statistics.” Autism Society, Autism Society, 26 Aug. 2015, www.autism-society.org/what-is/facts-and-statistics/.
“Key Facts about Asperger Syndrome Every Parent Should Know.” FitnessOpedia.com, Pub Labs International, Inc., 12 Aug. 2021, fitnessopedia.com/topics/conditions/15-key-facts-about-asperger-syndrome-every-parent-should-know/?xcid=7663&utmsource=bing&utmmedium=ppc&utmcampaign=370473298&utmcontent=1261140546916097&utm_term=info+on+asperger%27s+syndrome.