Autism: A Story of Great Worry and Great Love

Autism awareness - a story of great worry and great loveIn honor of Autism Awareness Month, we’d like to share a story about a very special friend. The story was written by his aunt…

I’ve realized over the years that there are a lot of people who don’t know anything about Autism, other than what they’ve seen from the movie “Rain man”. Autism has many variations and each autistic person is unique, like a snowflake, most of them are nothing like Dustin Hoffman’s character. I thought i’d tell you a little bit about my own experience with Autism.

I have an Autistic nephew. We knew something wasn’t right shortly after he was born. He was 6 months old before he was able to hold his own head up and he didn’t crawl until he was about a year and a half old but boy could he talk! My sister and I often babysat him and were amazed at how quickly his speech was developing despite his physical delays. We loved showing off how smart he was by pointing to things and having him name everything. He even associated each of us with the car we drove by saying our names and pointing to matchbox cars that were the same color.

All of a sudden that changed. He was becoming hesitant to talk and wouldn’t say anything when prompted. We thought he was just getting shy around strangers, as many 2 year olds do. His mother took him to several specialists and each time they said it was probably Autism. Autism? No way, we thought, he’s social and loves hugs and kisses. Autistic people hate to be touched and don’t smile at you! We were in denial but slowly it became clear that this was Autism. It was just not what we thought autism was.

I see him struggle to communicate with those around him because he lost most of the ability to speak at 2 years old and has regained very little of it. I watch people stare at him because they think his clapping and stomping is the result of a lack of discipline. They don’t understand that it is something he does to soothe his anxiety. He doesn’t know how to calm himself down otherwise. When people he’s never met before say hi to him, he just looks at them out of the corner of his eye with a blank expression on his face.

He’s now 10 years old, yet he can’t do a lot of the physical activities that other kids his age can do. He has hypotonia, or low muscle tone, something that is very common in autistic children. His hypotonia makes him clumsy. The muscles in his limbs don’t have enough tension to support some of his movements. His sense of pain is dulled considerably. His baby sister used to bite him on the arm so hard that it left big purple bruises. His mother didn’t know what was causing the bruises until she witnessed the toddler biting him. He just sat there not responding. A normal child would scream in pain and move away from the source. His brain doesn’t interpret the biting as pain. The lack of sensation to pain and the low muscle tone mean that he could seriously injure himself and not even know it.

I worry about what his adult years will look like. Will he be able to hold down a job? Will he be able to live on his own someday? What will happen to him if our family doesn’t have the financial means to take care of him, especially as we age ourselves? Will he ever be able to read a book? Will he ever again be able to tell us verbally what he’s thinking? Will he be able to stop someone from hurting him? It breaks my heart that the answer to most of these questions is probably no. That’s not true for every Autistic, but it’s the likely story here.

I look at him in awe because he is fascinated by things most of us wouldn’t give a second thought to. My heart melts when I see his face light up with sincere love for those he has grown to trust. And it makes me laugh when I see him interact with someone he clearly doesn’t! His BS meter is well oiled and fine tuned, even if some of his other skills aren’t. There is no fooling him. His laugh is joyful and infectious when you tickle him. He’ll say “more!” (one of the few words he still uses) when you stop. He loves to sit at the kitchen table with his Aunts and just watch and listen to them talk. He can’t join in on the conversation much but it’s very apparent he understands what we’re saying and wants to be a part of it. His sisters adore him and it’s clear that he is equally fond of them. They are much younger than him but they understand that he is a delicate little soul that needs extra love and protection. I worry about him so much but I don’t doubt that he will affect those who enter his life in a positive way. I feel very lucky that the autistic in my life is one who can show and accept love. There are many who can’t. It’s a wonderful feeling knowing that he can.

Autism is difficult to understand and there are daily battles that are both frustrating and baffling but it’s not a death sentence. It’s not something to be embarrassed by. Do I wish we understood the cause? Do I want there to be a cure? YES! But I don’t wish that my nephew was any different than he is. He is a unique, perceptive & lovable child and I am so happy that he is a part of my family. He is a daily reminder that we are not all the same and that we need to be more tolerant & accepting of each other.

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