I wish that my nephew had a visible disability.
I know that sounds terrible and many of you will disagree with me. But, if he were in a wheelchair, wore leg braces or required a feeding tube, others would be able to see his disability. Cullen’s disability isn’t obvious. When you look at him you can’t tell anything is wrong at all.
Cullen is a smiling, happy, beautiful boy with blond hair and brown eyes. He loves Mickey Mouse more than anything in the world. He loves cookies, splashing in the water and running freely through the Pisgah Forest.
He also has autism.
This weekend I had the privilege of spending time with my mom, sister and nephews in Pisgah Forest, NC. I was utterly shocked and appalled at the way people treated my nephew.
We stayed at a hotel in Pisgah Forest, NC. We stay there every time we visit, which is about four times a year.
This hotel offers a complimentary continental breakfast for all guests. Except for those with autism apparently.
We all were excited to eat breakfast together and plan the day ahead of us. While we were enjoying our Belgian waffle and yogurt the manager approached our table and asked us to take Cullen outside of the hotel because his voice was too loud and he may disturb other guests.
Did I mention it was sleeting?
So while I ran back up to the room to gather our belongings, my sister sat outside of the hotel in the freezing rain, crying and holding her little boy while trying to corral four other children to sit and be as quiet as possible until we could leave.
I find this completely unacceptable. Would you tell someone in a wheelchair that they had to leave the restaurant because their wheelchair took up too much room? Would you tell a parent of a child with a feeding tube that you have to feed him outside because it will disturb other guests?
Cullen is 3 ½ but because of his disability he can’t communicate like other 3 year olds. He communicates with sign language, gestures, vocalizing (making sounds with different tones) and speaking a few words. His communication challenges are two-way, so not only does he struggle with telling us what he needs, he also can’t understand us. He doesn’t understand two-step directions and definitely doesn’t understand behavior expectations. As you can imagine, he gets frustrated when others don’t understand him. When he gets frustrated, he cries. He is extremely smart, but it’s as if he’s trapped in a world in which we processes and communicates differently from us, so he can’t let us know what he thinks and feels.
I wish I could say that the experience at the hotel was isolated, but it wasn’t. Everywhere we went that weekend we experienced discrimination based on his disability. The teenager who worked in the bakery asked us to leave. The guys who worked at the deli whispered criticisms of him to each other and rolled their eyes when I asked if there was room to dine-in. The owner of the chocolate shop said, “oh great,” when we walked in and said to her employee, “is he wearing a diaper? I think I can smell him from here.” Even the elderly lady in the children’s consignment shop said to a co-worker, “can she not control her child?” Everywhere we went others rolled their eyes, whispered to each other as we walked by and were disrespectful.
Yes, his voice is loud. Yes, the vocalizing can be distracting. But he has a disability. Do we have no tolerance in this country for others who have special needs?
Autism is a spectrum disorder. This means that there is a wide range of what autism looks like. Just because someone doesn’t fit into a stereotypical box of what a disability should look or sound like doesn’t mean that they don’t have a disability. Since autism is a spectrum disorder, it varies greatly from person to person.
Chances are that you or your child will encounter someone with autism as the rate of autism has grown significantly over the past twenty years. Autism affects 1 in 88 children and is the fastest growing serious developmental disability in the U.S.
Those with autism have the right to be respected and receive equal treatment. Autistic children shouldn’t have to grow up in an environment constantly being told that their instinctive behaviors are wrong and feel that they can’t be accepted for who they are.
In honor of autism awareness month I’d like to ask you to please take a moment before criticizing the behavior of a child or perceived lack of discipline of a parent. The little girl in the grocery store may be experiencing sensory overload. The boy in the toy store may have been triggered by too bright of lights. The child in the hotel may have been trying to communicate his joy at spending time with his cousins. Please help do your part to make every child feel respected and accepted.
For more information on autism, visit:
Light it up Blue
Organization for Autism Research