Autism is a life-long diagnosis. For Zak Hines, his brother Tyler’s diagnosis is also full of lessons and blessings.
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The young man is fidgeting, his eyes darting about seeking … something. His lips move but no audible words emerge. The pacing begins and collapse seems imminent. To the outside world, the actions are off, weird. The young man knows this but just can’t focus on right now, for inside, within the complex entity of his own mind, the real problem rears its ugly head. Inside his head, a storm is brewing, rogue waves thrashing and churning like an angry hurricane.
His difficulties center around a line, a small thin barrier threatening to be broken from all sides at any time by unexpected changes to his schedule, loud noises, and his favorite movie not playing on his IPad.
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The headache starts, overstimulation making it hard for the young man to see, to think, to maintain control. A howl of pain, of anguish, rises through his diaphragm ready to burst out and … a hand touches his shoulder. Through the red clouding his sight he turns quickly ready to aim the nuclear bomb of emotional anguish and … the eyes find what they’ve been seeking. His brother. His protector, his confidante, his protector is there. The shoulders slowly drop, and his stormy mind quiets. All is ok in the world again. The sun will shine tomorrow and life goes on.
Tyler John Hines, the second of three boys born to Scott and Nancy Hines, was born on September 13, 1998 in New Haven, Connecticut. Fast-forward 17 years to the young man living with his parents and two brothers Zak (22) and Jonny (15). Tyler loves swimming, movies, and long walks with his family.
Sounds like a fairly normal kid right? But most 17-year-olds are focused on driving, graduating, maybe even a girlfriend. Their problems center around schoolwork, getting into college, where the party is on Saturday night. That’s not Tyler. Instead, Tyler has to focus on each day as it comes, keeping his emotions even-keeled, and remembering what behaviors are appropriate.
His difficulties center around a line, a small thin barrier threatening to be broken from all sides at any time by unexpected changes to his schedule, loud noises, and his favorite movie not playing on his IPad. His world, his bubble, threatens to break open at any second unleashing a harsh, unforgiving anguish that breaks the hearts of his loved ones into a million pieces. Tyler has autism.
Autism Spectrum Disorder (ASD) is defined as “a group of complex disorders of brain development that hinders the ability to read social cues and interact with others” (Autism Speaks). The spectrum of autism is both wide-ranging and unforgiving with symptoms of “high functioning” individuals as insignificant as mild social awkwardness to “low functioning” individuals that are unable to speak, walk unassisted, or use the toilet independently.
For as long as I can remember, Tyler has always been a mixed bag, a rainbow of emotions, a literal manifestation of what it means to appreciate the simplicities of life, and a look into what true loss of control is..
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Behavioral symptoms of lower functioning individuals can also at times be aggressive, self-injurious, or limit their ability to understand dangerous situations (ex. Crossing a busy street). Because of the wide-ranging spectrum of behaviors, physical symptoms, and personality differences in children and adults with the condition, a popular saying was coined in the autism community that “if you know one child with autism, you know one child with autism” and candidly there is no better way to describe the beauties and challenges that come with this condition.
Current diagnostic data from Autism Speaks, the world’s leading autism research and advocacy group, places one in 68 American children as on the Autism Spectrum. Roughly three million Americans are currently living with autism with the numbers reaching into the tens of millions worldwide. This condition is not going away anytime soon. It is a lifelong diagnosis that forces families to dig deeper, stand taller, and walk on in unity and love as we prepare and advocate for our children.
For as long as I can remember, Tyler has always been a mixed bag, a rainbow of emotions, a literal manifestation of what it means to appreciate the simplicities of life, and a look into what true loss of control is. It is often said in the autism community that God created autism to help offset the excessive number of boring people on Earth, and boy does that hit the nail on the head. But the fascinating thing about Tyler is that the more you observe him, not as a brother, but as someone who has worked with other children on the spectrum for 10 years, the more you learn and are able to recognize the separation of autism and Tyler’s own individuality.
This condition is not a one size fits all definition of a personality, rather it merely hinders certain areas and abilities. One of the biggest misconceptions of autism is that a cognitive disability is a side effect or even a symptom. Nothing can be further from the truth. These kids aren’t stupid. While cognitive disabilities are seen in some low-functioning individuals, it is hardly more than a statistical anomaly and often points to a corresponding diagnosis of an additional disability (secondary diagnoses have become the backbone for why the spectrum is so large).
When he’s properly motivated and at ease, his candor and attention to detail is astounding to the point that recall borders on the eidetic.
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The key to understanding autism lies in two areas: observation and knowing your subject. In the case of Tyler, I knew that in order to conduct a successful and insightful interview, the conditions would have to be executed to perfection. For starters, Tyler hates talking on the phone. As a very visual person, talking on the phone is difficult for him because he isn’t able to see the person and therefore cannot attempt to read certain social cues. The solution, therefore was to use FaceTime, thus giving us the opportunity to see one another and put him at ease for what hoped to be an insightful and thoughtful discussion. Additionally, the timing was of the essence due to Tyler’s limited patience and quick rate of fatigue at certain times of the day. Therefore, the interview was scheduled 3-4 days in advance, he was provided with the list of questions beforehand, and ultimately we spoke on a weekend so as to avoid the stress and fatigue of the school day affecting his answers.
My brother is a dreamer, occasional realist, and oh so confident in the validity of his own creations. When he’s properly motivated and at ease, his candor and attention to detail is astounding to the point that recall borders on the eidetic. His individuality soars to the surface in this segment when asked about his long-term goal of working in films, living in the Big Apple of Manhattan, at his favorite hotel in Times Square notwithstanding. This was a consistent theme throughout the interview as he discussed the 117-page script he’s written over the last year.
But his thought process regarding this work points to his own recognition, even if he lacks the ability to identify it, of his limitations set by his condition. He wants to be remembered, “as a good person, one who is very nice and had a good life”. He recognizes what the family, specifically his younger brother Jonny, also interviewed, and I recognize: he has so much potential, so much ability to do good in this world with his kind, caring demeanor.
He is a man who loves his family, to be with them, help them, comfort them. He yearns to create, to make people smile, to accept him. From the days of frustration, sadness, and even violence, we all feared that we’d lose Tyler to a place where he could get the behavioral therapy he needed to hopefully, one day, find happiness. It terrified us to think of him not being an integral part of our family. But God had other plans, bigger plans, better plans for him and slowly but surely he changed, going from a meltdown-prone child to an impeccably and uncommonly kind young man.
The future is bright, the storm has passed, and the dawn has come. Whether Tyler makes movies or lives with one of his brothers, his gift, his passion, his love will be omnipresent. He is our gift, our blessing, our lesson, and so much more.
Previously published on Medium
Photo: GettyImages