Autism Awareness: Light It Up Blue!

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Autism Awareness

Welcome to April and Autism Awareness Month.

 

Light It Up Blue! Beginning April 2nd, join people all around the world for a month of autism awareness. Put on a blue shirt, tint your social media profile picture, and change out your porch light. These are a few small things you can do to help show support for a crippling disorder that affects millions of children and adults around the world.

What should parents know? Start with the numbers. The Centers for Disease Control estimates currently that 1 in every 68 children is identified with autism spectrum disorder in the United States alone. That puts the figure at about 2 million individuals and tens of millions more worldwide. These are kids and their parents in your community, your neighbors—people who struggle day to day, often in silence. I know… because I’m one of those parents.

What is autism, exactly? Autism and autism spectrum disorder (ASD) describe complex brain development disorders in children and adults. Autism Speaks, an advocacy and outreach organization in the United States, describes these disorders as varying in degree with “difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.” You might be Light it up blue for autismwondering what that looks like. Would you be able to identify a child with autism? Maybe. Maybe not. A tip might be to look for the puzzle piece ribbon. Many of us in the autism community wear our ribbons with pride during the month of April, the national month of awareness for autism.

It seems everyone has an awareness ribbon these days, so many to remember. But what happens when the ribbon is something we don’t wear for a day or a month, but rather all year, every year? This is the case for our family and for my son, who was diagnosed with autism at two-and-a-half years old. He’s sixteen now, a strapping teen almost six feet tall. In the past six months, he’s been doing normal teenage stuff, including learning to drive. (Help us!) Except our son isn’t quite like other teens. He has autism, and on Thursday, April 2nd, he’ll be wearing blue with pride.

A Day in Our Life with Autism

Things weren’t always as they are today. In fact, we had quite a rough start. I knew early on that something was wrong, but I couldn’t quite place it. My son wasn’t talking, and it was difficult to take him places in public. More than difficult. Bright lights, too much noise, and crowds seemed to set him off, as did transitions: moving from one task to another, from home to car, or, for example, from the cereal aisle in a grocery store to frozen foods.

I have a vivid memory of a shopping trip gone bad. Like it was yesterday, we were rolling down the frozen food aisle, somewhere between bags of peas and boxed pizzas. The cart was piled high and I had only a few items left on my list. I knew I was pushing it—could feel it coming—but we were almost done. Without warning, shrieks pierced the air. My son had flopped onto the floor in front of me in full tantrum mode. This was no typical tantrum, though; it was something my husband and I referred to as “red zone.” My daughter was asleep and strapped into her carrier on the cart, so I approached my son with caution. Arms flapping, legs kicking, he smashed his head repeatedly against the concrete ground with no recognition of pain. A crowd gathered and people began to point. I tried calming my son to no avail. Suddenly, a man and complete stranger to me spoke up: “You have got to be the worst mother I have ever seen. Control you child, lady!”

Shortly after his diagnosis and not knowing what else to do, I panicked. I threw my purse over my shoulder, grabbed my daughter’s carrier, and swooped up my son. I fled from the store, abandoning the full cart of groceries. Once both kids were safely strapped into their car seats, I sat down in the front seat. I turned on the car, cranked up the air-conditioning, and fell to pieces. This was a typical day, early on.

Most parents of special needs children develop a kind of rhino hide over time, a tough exterior that appears to shield rude comments and the wide-eye stares of strangers. “I’m glad that’s not my child!” they whisper, loud enough to be heard but not enough to make a scene. “Spoiled! Just needs a good spanking.” I can’t tell you how many times I heard comments like these… or worse. The thing is, the hide isn’t impervious—not even remotely.

What can parents do?

Challenge yourself this April to support autism and those families who are touched by this condition. Here’s how to help:

Easy things: Light It Up Blue on April 2nd at home, work, or school. Wear a support ribbon or bracelet. Find a walk or attend an autism event in your hometown. Do a little research and be informed. Donate what you can.

A bit harder: Be compassionate when you see a parent struggling with a child; you don’t know the whole story. Please don’t judge, stare, or point at our children. It hurts us. Teach your children acceptance of others. And remember that as tired as we often are, parents of children with autism are on constant alert. Be kind. If you whisper behind our backs, we’ll hear you.

For more information about how to get involved in your community: Light It Up Blue

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5 comments

  1. Mary says:

    Thanks for sharing your story and for shedding even more light on such an important issue. I am right in the thick of tantrums, whining, and opposition with our 3 yr old and it is a challenge. Empathy from other parents when out and about goes a long way.

    • Maggie says:

      Mary – I think you are right on – everyone could do with just a bit more empathy! That’s why we started this blog – parents need to be support more and judged less.

  2. byamtich says:

    I’m getting how much the diagnosis helped you connect with additional resources. I like that you call for acceptance in your last paragraph. A lot of Autistic kids (identity-first language is what Autistic self-advocates request) turn into Autistic adults. They say “If you’ve met one autistic person, you’ve met one autistic person,” so I certainly can’t speak on their behalf.

    However, I am Autistic, a parent, and a talk therapist. I don’t view my brain wiring as a tragedy, and people are asking for acceptance over awareness. https://www.facebook.com/events/640472342746324/

    I’m trying to think which groups are best for parents to get support for their struggles, in a way that honors the dignity of the kids. It’s really, really complicated, and I also hope you have local resources. Perhaps Parenting Autistic Children with Love & Acceptance: https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance

    I’ve heard that not everybody wants to get political, but how we approach neurodiversity impacts how kids grow up understanding and accepting themselves.

    • Maggie says:

      Bob – Thanks for adding these great resources!

      I think honoring and accepting all people, as whole people, is vitally important. At the same time, though, we can be honest about the struggles we have.

      I know that I have felt very isolated as a parent of a child with anxiety (and pediatric anxiety disorders are not all that rare). It’s just that we don’t talk about what it means for our kids or us as parents. I really appreciate hearing stories from parents who are just ahead of me on the journey, seeing the paths that they took and gleaning helpful information along the way. Not everything other families do will work for us, so I take what’s helpful and discard the rest.

    • Piper says:

      Thank you for your comments, Bob. And thank you for listing additional resources. There are many different organizations and Autism Speaks is only one (a newcomer at that). My intent with the post today was to help spread general awareness. But this, as you point out, is a much larger issue. Thank you for your closing paragraph about how we–as parents and/or as a society at large–approach neurodiversity. I agree completely.

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