My daughter, Chloe, was diagnosed with autism spectrum disorder when she was 4 years old. She is an intelligent and caring child with a passion for reading, music and art. Though she struggles socially, she gets along well with other children and, for the most part, they are unfazed by her differences. It is adults who have caused problems.
A year before her diagnosis, while going through the initial evaluation process, we enrolled Chloe in a local preschool. She was occasionally overstimulated in class, causing her to scream and cry. She was never violent and would eventually calm down and move on. But my husband and I received a phone call a month into the school year from her teacher, who said she had received persistent complaints from two parents.
These parents called Chloe a disturbance and a distraction, demanding that she be moved to a different school with “those kids.” They cited incidents of her screaming in frustration and crying at birthday parties and other events outside of school as further evidence that she didn’t belong in a class with their children.
The instigators were people whom I considered close friends and knew I was in the process of having Chloe evaluated for autism. The teacher told us that our family struggles were being used as “petty parking lot gossip.” We offered to remove Chloe from the school several times, but the teacher assured us that she was manageable and should finish the year with her friends.
Midway through the next school year, when Chloe’s bus route changed, the new bus driver began verbally abusing her. The driver would yell at her from the driver’s seat, telling her to “zip it” and “get off my bus.” I didn’t understand why Chloe no longer wanted to get on the bus. She regressed in therapy at school and had outbursts at home. After months of enduring this mistreatment, she was finally able tell me what was happening. Teachers and staff eventually witnessed the abuse, and the driver was removed.
In public, people assume Chloe is just a poorly behaved child or I am a deficient parent. Recently, a woman came up to our table in a restaurant and told us to “put a gag in that brat’s mouth and shut her up.” When we first got to the restaurant, Chloe was making noise because she was hungry, tired and overstimulated. I tried as hard as I could to keep her quiet, and she calmed down as soon as her food came. Not once did an employee say anything to us.
In other cases, people have stared and pulled their children away from us. One little girl who knew Chloe from preschool said “hi” to her at a fair. Her parents turned her away.
This has caused me to not want to go out, attend parties or playgroups. When I would take her out, I often found myself leaving early, most of the time in tears. I avoid activities that I know will trigger an outburst. I don’t want to be insensitive to other people’s experiences and try to avoid negative comments.
Kids with autism don’t wear a sign around their necks announcing, “I’m autistic.” But even if people can’t tell that a child is on the autism spectrum, judging and publicly berating parents is not helpful. I have harbored a lot of guilt over whether I did anything to cause her to be autistic, if I didn’t see it early enough or handled it wrong. Adding outside social pressure is tortuous.
According to the Centers for Disease Control and Prevention, 1 in 59 children in the United States have autism spectrum disorder and 1 in 6 children have a developmental disability, ranging from mild speech language impairments to cerebral palsy. Because Chloe’s autism is not a visible handicap — like many developmental disabilities — people assume she has a behavior problem.
I have found help and support in her current school, our community and Facebook groups. I have joined the Special Education Parent Teacher Association at Chloe’s elementary school and met other parents of special-needs children, who have told me they have had similar experiences with bullying.
I have realized that my husband and I are Chloe’s No. 1 advocates. We have to stand up to her bullies, fight for her education and get her the services she needs to thrive. I believe she will lead a very successful life. Autism doesn’t define her, and it doesn’t define our family.
Children are born with kind hearts. We create these prejudices within our children because they learn from adults. When you are talking in the parking lot or on the phone, your children are listening. This is how bullies are made. We set the example and they follow. It is time for us to raise the bar.