A Humble Hue: My Story about Autism

On a beautiful Thursday spring afternoon, I was counting down the minutes until closing time at the Municipal Museum. Employed as a part-time custodian and studying as a full-time graduate student, I had a busy week. I was ready for my shift to end. I looked forward to having a sit-down dinner with my wife. Fifteen minutes before five o’clock, a mom with a young boy entered the facility. Sweeping the entryway at this time, I politely greeted them and advised that we would be closing shortly. The mom quickly acknowledged me and rushed after her galloping child as he pursued the exhibits in a seemingly haphazard manner. I immediately noticed this and nonchalantly started to follow the museum visitors as I dusted the display placards. “Why is he acting like this?” I thought.

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The boy appeared to lack listening skills and roved in a peculiar pattern. I immediately thought to myself, “Oh great, I always get THESE kind of customers right at closing time. Don’t they know we close at five. And why is that mom not paying attention to her hyperactive kid!” I forget the details of the end of that work day. But what I do remember is that before the family left for the day they visited the gift shop. “He has autism. My son has had a particular obsession with dinosaurs that past few months,” the mom casually remarked to the museum cashier and myself as the boy searched the gift shop for dinosaur paraphernalia.

This seemingly mundane work experience happened over five years ago. Why am I telling you about a random encounter I had with a child with autism? I have never seen this family ever again. Nevertheless, after my oldest son was diagnosed to be on the autism spectrum a lot of my past experiences with individuals sharing similar traits to my child revisit me in my dreams and thoughts throughout daily life. See, I thought I knew things about autism before I had children. I acted self-righteous toward that mother five years ago. Today, I want to share three ways my child with autism has humbled me and how our family’s path toward a diagnosis educated me on the uniqueness, trials, and joys of autism!

  1. Kaleidoscopic, not monochromatic:  The error of my previous way of thinking stemmed from a simplistic view of the world. I tended [and oftentimes still do today!] to reduce, or place people into categories. Individuals are either good or bad, respectful or disrespectful, educated or ignorant, right or wrong. I lumped individuals into general categories. Perhaps that was my way [and still is my way] to come to grips with difficult situations and reconcile seemingly contradictory events with the rules and laws of nature. What my precise motivation for having this black/white dichotomous worldview is for another topic. The point is I did not view each person as an individual.

In my journey with learning about my son’s diagnosis of being on the autism spectrum, I entered a new realm of possibilities. My old way of seeing the world did not line up with the increasing awareness and knowledge on the study of autism as a spectrum.  According to the dictionary, the word spectrum is defined as “a broad range of varied but related ideas or objects, the individual features of which tend to overlap so as to form a continuous series or sequence.” Synonyms include: gamut, range, span, or rainbow.

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Individuals with autism spectrum disorder generally exhibit the following characteristics:

  • Ongoing social problems that include difficulty communicating and interacting with others
  • Repetitive behaviors as well as limited interests or activities
  • Symptoms that typically are recognized in the first two years of life
  • Symptoms that hurt the individual’s ability to function socially, at school or work, or other areas of life

During our journey toward a diagnose, my wife and I had our son evaluated because he exhibited OCD tendencies, social-communication issues, and various periods of obsessions . We learned that our son was on the higher functioning side of the autism spectrum– he needed some interventions and therapy. Overall, he is still able to communicate pretty well. In other words, my son could hide his autism well, but my wife and I wanted to obtain a diagnosis to grant him services to best help him succeed in daily life. In telling his teachers and caregivers, our son’s great gifts and needs due to his autism diagnosis we get a nearly ubiquitous reply:  “Really? He doesn’t look like he has autism.” Autism spectrum disorder is an invisible diagnosis. Being on the high functioning end of the autism spectrum my oldest son appears to be a regular kid. That is the beauty and challenging nature of autism– one shoe does not fit all kids!

Currently our youngest son is trending toward a path similar, yet different from our oldest. He shows the same characteristics as outlined above. A pattern of autism is already present in our family, however, our youngest son experiences different struggles compared to our oldest. Kids with autism spectrum disorder are unique. There are a broad range of issues and gifts, along with a wide array of services available to assist individuals.

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  1.  Ever-learning: According to the Autism Speak website, almost 1 in 45 children, ages 3 through 17, have been diagnosed with autism spectrum disorder (ASD). A few years ago, I heard a commercial on the radio advising that 1 in 88 children were diagnosed with ASD. Why the big increase? Not being an expert myself, I have thought about this situation many times. My wife recently completed her graduate studies on special education and she took several classes relating to autism spectrum disorder. Talking about the rise of ASD, she mentioned that an increased awareness and broadening of the spectrum [recently Asperger’s Syndrome was added] is a factor of such increase.

It is important to realize, that since ASD is a spectrum professionals, in education, psychology, and counseling are constantly learning about autism. In fact, the logo for Autism Speaks is a puzzle piece. Puzzles, like a mystery, contain constant changes in knowledge and basic assumptions may be overturned upon the arrival of new evidence. It is important to realize that if you have a family member, friend, neighbor, or acquaintance with autism be prepared to be open to learning. Winston Churchill once said, “I am always ready to learn although I do not always like being taught.” Actively seek knowledge about autism spectrum disorder and learn to develop empathy. I am certainly working on this and wish I learned this lesson five years ago.

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3.No One is a Full Expert: “If you’ve seen one, you’ve seen them all!” This adage summed up my mindset on the subject of autism. Acting in ignorance and pride, I limited individuals with autism spectrum disorder to a generality instead of unique cases. Truly, no one really in a FULL and complete expert in the field of ASD. I need to continually to be wary of judging my oldest son’s struggles and strengths against my youngest child’s limitations and  skills.

As a new parent, I got lots of parenting advice from “so-called” experts. My son did not sleep through the night until he was three years old. I felt like I was being told, “You do not know what you’re doing”. To be frank, a large majority of the time, I spent self-critiquing and self-doubting my ability to parent. Once we got a diagnosis for our son, a weight was lifted. We had an explanation. We had options. I may not have been an expert [nor still am today] but as least my family as direction to help our son.

Please learn from my mistake. Autism spectrum disorder is not uniform in its scope. Initially I failed to see the beautiful hues of humanity within ASD. Individuality exists for people diagnosed with autism spectrum disorder, not conformity or homogeneity. I am by far and expert and I can only see from my humble hue in the case of my son. What I do know is that I am always ready to learn. Although I do not always like being taught I pray for the gift of understanding and patience from the Holy Spirit to be open to teaching with grace.

 

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***The Advocate, the holy Spirit that the Father will send in my name—he will teach you everything and remind you of all that [I] told you.***