This is the shirt I wear when we have family outings. My husband has the same shirt, only in black, for the same reason. Many other autistic families have business cards they hand out explaining that their child is not being a spoiled brat or misbehaving, but is autistic. Why, you might ask. Why do we feel the need to wear a shirt or hand out cards notifying strangers that our children have autism?
Imagine you’re having dinner out with your family at a nice restaurant. It’s Friday, so the restaurant is pretty packed. The air buzzes with dozens of conversations over a background chorus of kitchen commands and clanging dishes. Five televisions are broadcasting three different versions of the day’s big game above the bar as the announcers’ commentary scrolls along the bottom of the screens. Juxtaposed to the bright lights emanating from the kitchen, servers dash by hungry diners anxiously awaiting their meal in the dimly lit dining area.
Then, a scream. And, not just any scream. A blood-curdling, horror movie-esqe, brain piercing scream.
Many people have experienced this situation. You look around, trying to figure out where it came from. If you can’t figure it out, you may even ask the server what happened. You discover that a child a few tables over was the source of the scream. “What a little brat,” many people think. Some may even joke with their dining companions that the kid’s parents must have told him he couldn’t have any dessert. Looks of disdain and judgment flow to the screaming child’s table from all corners of the restaurant. Whispers are overheard – “Discipline your kid, lady. Sheesh. We’re tryin’ to have a nice dinner here.”
Fewer people have experienced what it feels like to be that screaming kid’s parent. Let me give you a glimpse. The family of that screaming kid? They were just out trying to have a nice family dinner, too. But, the restaurant was too busy for them to get a booth and the hardness of the chairs at the tables makes it difficult for their autistic child to sit still. The clamor of the conversations, kitchen chorus, and televisions, intermingled with the whoosh of the air as the servers went by and the buzz of the dimmed fluorescent lighting, made it difficult for their autistic child to distinguish his parents’ voices from the cacophony. Because he was trying to sit still, the autistic child couldn’t flap his arms or spin around when he started becoming overwhelmed. Eventually, the noise and the newness of his environment took their toll. When the server arrived, he saw that this restaurant’s macaroni and cheese was made with penne pasta instead of elbows like he was used to, and that was it.
That brain piercing scream.
His family tries to calm him down. We hug him tightly, because sometimes that helps. We hand him his favorite stuffed animal, tucked inside the pocket of someone’s jacket. As the meltdown subsides, the stares and whispers begin to roll in. We eat our meal, hoping to finish before things become too overwhelming again, and endure the looks of condescension and commentary on our terrible parenting until we pay our bill and depart.
As David M. Perry explained in a post for the New York Times earlier this year:
“Subtle acts of prejudice matter. They tell the target “you aren’t one of us.” They reinforce social norms that exclude people. Each little glare, stare, or comment is, by itself, trivial. But raising a child with disabilities already forces you to live outside the normal. The fight for inclusion in schools, parent groups, play spaces, friendships, recreational leagues – in society writ large – is difficult. Microagressions from strangers reinforce the message that we don’t belong in public spaces.”
These microagressions are why we wear our shirts and why other parents of autistic children hand out cards. They are a part of the reason autism awareness matters, but only a part.
Awareness matters so that autistic persons are not excluded from school and work environments because they may communicate differently.
Awareness matters so that innocent parents aren’t subjected to false accusations and investigations because an educator mistook symptoms of autism for signs of child abuse.
Awareness matters so that families are not discriminated against when trying to obtain rental housing because of landlords’ fears that an autistic child’s meltdowns could cause property damage.
Awareness matters so that police and emergency workers know how to deal with autistic persons they may encounter in their work.
Awareness matters so that a mother isn’t accused of neglecting her autistic child because she had to go to the bathroom and, in the two minutes her child was out of her sight, he climbed out of the window to see the flowers in the yard more closely.
Aside from the impact autism awareness can have on individual lives, awareness has become increasingly important in the realms of public policy. As far as medical conditions are concerned, the autism spectrum is a bit of an odd duck. It is highly variable and manifests with a range of both physical and mental symptoms. Some on the autism spectrum are intellectually challenged, some are of average intellect, and others, often referred to as twice-exceptional, are highly gifted.
The increased prevalence of autism in the U.S. has already resulted in some changes in different areas of the law. The rising numbers of children diagnosed along the autism spectrum will grow into adults on the autism spectrum. As the number of autistic adults in our society increases, so will the regulatory, legislative, and judicial changes necessary to accommodate this odd duck into our existing legal frameworks.
Over the month of April, we will be blogging about several areas of the law and how the law affects, and is affected by, those with autism. We invite you to visit our website, like us on Facebook, follow us on Twitter, and read and share our blog as we do our part to raise autism awareness.
Join us as we Light Up the Law In Blue.