Category Archives: autism

The eloquence with which this story is written exemplifies the profound and unconditional love that an aunt holds for her niece.

Thank You Aunt Renée for your sharing words, and for giving your heart.

I saw her blank stare when I spoke to her when she was just a toddler. I was afraid to voice my thoughts. I was in tune with the fact that my sweet, beautiful, perfectly dressed little niece, with a delicate name to fit… Sara…might be autistic.

Her modeling shoots landing a Macy’s ad, her amazing intelligence, her outgoing personality, would dismiss to any onlooker that she could even possibly be autistic.

Sara’s personality is unlike the experiences I had with autistic children. I have two cousins who are autistic, and my perception of autism is probably what most people are familiar with. Glenn is a grown man who is practically non-verbal. He runs up and down the stairs in a repetitive motion. He so perfectly mimics animal sounds, and clearly recites echolalic repititions from recent conversations in the room. Then there is Brian, an overly verbal aggressive grown man. He has savant qualities. He remembers names and birthdays from 10 years prior just by a persons face. His preoccupation with cartoons and facts about history were forced on whoever was within earshot. He would speak excessively and not have consideration for others or their response. Neither of them smiled. It is obvious to the average person that Brian and Glenn are autistic. There is no need to explain to strangers when they are in public being themselves.

Explain, explain, and explain.

The road Mary and Bob travel, because it is not obvious that Sara is autistic.

Sara smiles. Sara enjoys. Sara interacts. Sara is smart. Sara plays. Sara is funny.

So when Sara is having a meltdown in public, it is rough to handle without strangers commenting, or rolling eyes, at the parents who look as if they have no control.

But because she still shares those same core autistic symptoms, she is not typical.

My 7 year old twin boys, Johnny and Ricky, are Sara’s cousins. Just recently Ricky asked me, “What is wrong with Sara? What does she have? Why is she so bad sometimes?” The first thing that popped into my mind was ‘Sara is Autistic’, but this was a little more complicated than they could understand. I responded with, “Sara has a different way of thinking than most other children. She is not bad; her brain just does not let her understand certain things as easy as yours. Some kids have trouble with math or reading, Sara has trouble understanding why she can’t have something.” They just kind of nodded in agreement. Somehow that ended their questions. They have stopped coming home and telling me how Sara acted at a family gathering. Somehow they are already getting it.

When she plays with Johnny and Ricky, Sara’s non awareness of their feelings or enjoyment confuses the boys. I know that it will take many years for them to completely understanding her autism. I like the fact that they are growing with Sara, and her personality and actions will become what Sara is, and not what autism is. They will love her and be there for her no matter what.

I must mention Sara’s little sister, Erin. Sweet as pie, and always there to jump in when Sara is having a meltdown. Her compassion kicks in at the young age of 6, and she runs to get Sara’s weighted blanket or favorite stuffed animal to help her calm down. Erin has a lot to endure as Sara’s sibling. She will always have to compromise with Sara in a way that may not always benefit her for the sake of avoiding conflict. I am sure Erin’s compassion and empathy will only continue to grow as she gets older, and that hopefully she will look back in her childhood and see what positive effects her family dynamics instilled in her.

I watched as Mary and Bob endured meetings about Sara’s behavior in school. They glided without choice down a road that took a turn they never expected for their baby. I see the hurt in my best friend’s eyes. I understand from my own personal experiences how hard it can be to visualize the future of your newborn when she is lying in your arms, just to have it twisted and turned by a diagnosis. Autism is a word that changes an entire future, a future that now holds the unknown.

Even as I write this, after 8 bumpy years, family members most likely still grasp on to inner denial that Sara and her family will be affected with autism for an entire lifetime. Autism is hard to wrap one’s mind around, but if one can wrap their heart around it, the future can be full of love.

There are countless pictures of Sara smiling. I love that she smiles, because although it may not be happiness for anyone around her, I am thrilled that she can feel it for herself.

Autism speaks… we may listen, but we do not always understand.

We love you Sara!

Aunt Renée

~story & photo submitted by aunt renée

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Early last week I received this entry into my 2010 Autsm Campaign, my first official entry.  I just want to give a special thanks to Nicky’s mom for sharing their story.

Her last paragraph is especially true and poignant.  It reminds me just how I feel about my little brother Paul.

My son Nicky has always been a very special little boy. Ever since he was a baby, people have responded to his big, blue eyes and sweet disposition. I always took pride in his laid back demeanor. Other children would take toys from him and he’d hand them over without fuss. I thought he’d inherited his father’s neat streak when he started lining up his little cars just so. His love of books and ability to memorize letters and stories at a very young age was just astounding. His speech came early and he was walking within the normal developmental parameters.

It wasn’t until after his third birthday, when I was pregnant with my daughter, that I started to think something wasn’t quite right. He was frequently jumping up and down, flapping his hands, galloping back and forth and making strange sounds. Friends and family thought nothing of it. “Little kids do strange things sometimes,” they said. But I’d heard those same sounds and seen those same behaviors in another beautiful little boy who lived across the street. A boy that had recently been diagnosed with an Autism Spectrum Disorder.

The hardest part of this whole journey was deciding if we needed to seek help. I felt guilty for thinking my son was different or possibly disabled. If most of my friends and family thought he was fine, why didn’t I think so too? But his speech development had plateaued and when Nicky’s preschool teachers voiced concern that he didn’t seem interested in playing with his peers, I decided to have him evaluated.

Nicky was diagnosed with Pervasive Developmental Disorder (PDD) a little over a year ago. Now he’s in a special education program in our school district and receiving the therapies he needs. He’ll be entering kindergarten next year and we’ve recently seen big improvements in his speech and social interactions. Those mini steps forward feel like parades-and-fireworks-worthy accomplishments.

On the harder days, I try to remember what a wonderful friend once told me. Nicky will always be that same sweet, smart, special kid I’ve known all along. A diagnosis doesn’t change that.

~story & photo submitted by Nicky’s mom

Please be sure to leave a comment below…simply by doing so you’ll be spreading love, and helping to raise awareness.

~Find Out About The Campaign~

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