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Advocating for Autism Awareness

Advocating for Autism Awareness

There once was a time I did not understand autism.

I never knew how autism impacted those who are autistic and their families. I never knew how clothing and blankets could be uncomfortable and sometimes even painful for someone autistic. I never knew how noises could seem so much louder, how lights could feel so overstimulating or scents so overpowering. Many sensory triggers can lead to different reactions. I never knew how someone could watch the same movie over and over and never get bored. I never knew how the smallest change to a routine could significantly alter someone’s day. I never knew, because I never knew someone with autism.

After joining the pediatric emergency department team at Advocate Children’s Hospital, I met an amazing person named Kelly Vitalo. Kelly understands autism on a whole different level because her son, Joey, is autistic. Kelly and Joey are near and dear to my heart, and that is how I learned what I never knew.

Every person on the autism spectrum is unique in their own way. They may seem different to us, but they are not that different at all. Just like us, from movies to food and everything in between, we all have our likes and dislikes. Autism tends to be misunderstood in many ways because there is no beginning point or end point. Therefore, there is no telling the difference between autism and other traits. For example, what could be perceived as stubbornness is a way of expressing how they feel.

Autism is not the definition of who they are, nor is it something that should ever be labeled. Autism is a world which needs understanding, support, respect, but primarily, acceptance.

Understanding the world of autism begins with not just awareness, but also education. Kelly understands this world, and she has built a bridge with her love, understanding, patience and acceptance. She has helped guide me and my colleagues in the emergency department by teaching us.

We’ve learned that people typically have a routine for their day. When it comes to autism, routine is a vital necessity. When interrupted, days become difficult. Kelly knows firsthand what it’s like to face these daily challenges – not only in her work environment, but also in her personal life.

We now better understand what it’s like for an autistic child who has a medical problem needing immediate treatment. They leave school to go to the emergency department, where they have never been before. New surroundings and new people can become very unsettling. They see bright lights and hear all types of sounds – people talking, monitors beeping, bright lights, mixed with strangers they never met coming in and out of the room. This alone can make it very stressful.

We see a lot of behaviorally challenged children in the emergency department. Kelly has taught us how to interact with these children to make their experience as peaceful and calm as possible. They may seem to be a mystery to us, but to them, we are a mystery, as well.

Non-verbal autistic children rely on a system called PECs (Picture Exchange Communication System). Kelly has created a book of PECs for our unit with different types of procedures – blood draws, IV insertions, x-rays, as well as other emergent tests and procedures. These pictures are used for understanding – to help calm and improve coping.

While some people may feel intimidated and not know how to approach a child with autism, we now do. Kelly has been a shining light, guiding us through these challenges.

There once was a time I did not understand autism. I once was in your shoes. If I had only one wish, I wish there would be more understanding. With more understanding, there would be more acceptance. With more acceptance, I believe, we can finally make all the pieces of the puzzle fit.

Imagine what the world would be like if everyone were the same. In the words of Dr. Seuss, “Why fit in when you were born to stand out?”

Kelly hopes to connect with more parents who have children with autism. She is working on creating her own website to support and help parents. She can be reached at autismMom131@gmail.com

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Comments

4 Comments

  1. So very happy to read this article and learn about what is being done at Advocate Children’s Hospital for our pediatric patients who are on the autism spectrum. I am especially thankful that you emphasize the uniqueness of how this neurological condition presents itself in every person on the autism spectrum, which is why this is referred to as a spectrum disorder.

    As a mom of a young adult on the autism spectrum, I have lived through these challenging situations through my son’s early years, his teenage years and now into adulthood. As these children grow up, their social challenges, however, are given less of a “pass” by our society since they are no longer children, and their challenging behaviors are no longer viewed with as much compassion and understanding. I hope that the ways that hospitals have learned to work with young patients on the autism spectrum extends to older children and adults as well.

    One of the special challenges individuals on the autism spectrum face is finding employment. Many are college educated and have very specific marketable talents and skills, but have found it very difficult to find or keep a job due to their social challenges. More and more companies are becoming aware of the unique attributes of adults on the autism spectrum (like their attention to detail, focus, precision) and beginning to accommodate their work places to best utilize these valuable skills. I hope that healthcare organizations also begin to recognize the merits of hiring these skilled individuals who are have also proven to be among the most dedicated and committed of employees.

  2. Such a great article! I hope everyone reads it to learn of the behaviors of this syndrome. For those affected who are verbal, some people (maybe most) think the child is a spoiled trying to get his/her own way. They think strict discipline is the answer. They don’t understand the outbursts and it’s so easy to say “what that kid needs …..” Nothing is further from the truth. I applaud Kelly for her diligence in understanding and sharing her knowledge of autism with Kim and the rest of her team in the ED. As much as the child affected needs patience and understanding, so do the parents of an autistic child or children with a sensory disorder. Its a rough situation for everyone in the family. Thanks!

  3. Very good material. Thanks!

  4. I just sent Kelly a message via FB Messenger to thank her for inspiring you to become: Educated, Aware and an Advocate!!
    I hope to connect with her. I started a NFP, Support Group for Parents and Caregivers of children with Special Needs and not a month goes by that I don’t meet someone that’s part of this journey.
    Parents and caregivers need all of the assistance and support they can get, so that they can continue to do their best for their children.

    Thank you for sharing your experience!!

About the Author

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Kimberly Phillips

Kimberly Phillips is a pediatric emergency department technician at Advocate Children's Hospital-Oak Lawn. She has been working in the Pediatric ER for about three years. She joined Advocate in 2011 working as a Patient Care Technician in Advocate Children's Neonatal Intensive Care Unit (NICU).