April 2nd came and went this year with no great fanfare from me. Not this year. This year I just couldn’t put on a blue shirt and beg my family and friends to do this same. April 2nd was Autism Awareness Day, but at this point, my friends, aren’t we all “aware” that Autism exists?
I used to get so excited for April. This was the month I felt free to share data, memes, and facts about Autism that people might not yet know. The organization Autism Speaks started a “Light it up Blue” campaign to spread awareness and I jumped in with both feet. We had “wear blue” campaigns at school, took pictures, and made collages of my friends and family wearing blue in support of Braden and others they knew who are affected by Autism. All of this made me feel like people cared. And truly, I loved it.
There are several reasons I didn’t jump into the celebrations this year. The first reason is personal. On April 2nd, we were dealing with the fact that Braden was struggling both at school and in his home. You’ve probably read in the past about his dislike of toilet tank covers and how he, on occasion, breaks them. This action whether it is sensory-related, OCD, or some other behavior, has always perplexed us. Over the past few months, he has broken five more tank covers; one at home, two at school, one at another group home, and the last at his horseback riding lessons.
Well, on Autism Awareness Day this year, he took it a step further. On that Thursday, he physically lifted two toilets out of the floor at his home, dragged them to the front yard, and smashed them to bits. Like me, you are probably thinking to yourself, “Wait, how is that even possible?” Yeah, we have been asking ourselves that as well. Superhuman strength? Adrenaline rush? Who knows. He ended up cutting up his hand so badly, MIke had to take him to Urgent Care. (He is okay and needed some minor first aid and glue). Although we hoped this was just something he would only do at his home, the next day we discovered that he tore one out at school as well. Just sit with that vision for a moment. Can you imagine picking up a toilet and breaking it free from the floor? No? Neither can I. Where does he get his strength?
A realization fell on us like a lead balloon. Does this now man that we cannot safely bring Braden anywhere that has toilets? Now think about that for a moment; Anywhere-that-has-toilets. So yeah, we can no longer go anywhere with our son unless they happen to have porta-potties. That’s a sobering thought.
So, on Autism Awareness Day, our son physically lifted three toilets out of the floor, broke them, and then had to go to Urgent Care. How does one celebrate that momentous occasion? Balloons? Cake? Snapping a selfie wearing blue? Nah, sorry, not this year.
Even though the toilet thing really got us down, that’s not the true reason I’m not celebrating Autism Awareness. Instead, I’m celebrating World Autism Month and encouraging everyone to “Level Up” in their understanding and support of the autistic community.
Last April I interviewed Dr. Stephen Shore for a podcast I host for SENIA. Dr. Shore is an adult with Autism, who wrote the book Understanding Autism For Dummies and is on the board of Autism Speaks. He encourages society to now focus on the Four A’s of Autism: Awareness, Acceptance, Appreciation, and Action.
According to the most recent report from the CDC, Autism rates worldwide are 1 in 54. This means we all know someone who is affected by it. So yes, everyone is already “aware” of Autism. In my opinion, we should be past the point of Autism “Acceptance” as well. In fact, I don’t really even understand the word “Acceptance” in this context. If we are “Aware” that Autism exists, then we should naturally “Accept” it. Am I missing something here? I imagine so, as we know that not all people are accepting of differences in our world. So if you or someone you know isn’t quite at the acceptance level, please let me know. I would love to chat more about how living in an inclusive world is good for everyone.
The next step is “Appreciate.” Let’s take time to appreciate all the great work neurodiverse people have done for our world. Where would we be without Albert Einstein, Dr. Temple Grandin, Carly Fleishmann, and others? They are amazing individuals. We can appreciate their work, their perseverance, and how they have changed our world. Let’s take a bit of time to appreciate neurodiversity at a smaller level. Does your child have a neurodiverse classmate? What lessons has your child learned from their classmate? I bet there are many. We need to appreciate that people have all different types of brains and help our children understand that we are all diverse in many ways, and our different brains are a good thing.
I’m not gonna lie. There are times I don’t appreciate Autism. I mean, we had an Urgent Care visit this week for God’s sake. However, it’s probably not the Autism alone that caused this behavior in Braden. It’s more likely that his profound Intellectual Developmental Disability (IDD) and OCD together with his Autism caused this behavior. It’s complicated. (Should I list that as my new Facebook status?)
That last “A” is Action. This is where I’m asking for support from you. Individuals with Autism are valuable members of society. So now it’s time to advocate and take action. A more inclusive world starts in the home and then in the school, the community, and the workplace. Do you know someone with a child with Autism? Be a friend to that parent. As parents, we often feel isolated and alone. While you’re taking your child to music lessons or the ball field, we are taking ours to therapy. When you’re complaining about your child not doing their homework (a fair complaint), many of us are saddened that our child has never learned to read or write. We don’t say anything as we don’t want people to feel sorry for us or think they can’t be our friends due to guilt over our different situations. As I said, it can be isolating. So why not reach out and ask someone over for a cup of coffee, or better yet, a glass of wine? While they are visiting, ask them questions about raising their child. Listen and ask if there is any way you can support them.
Teach your children about Autism and ensure they are accepting and inclusive in their daily life. Learn about your child’s classmate with Autism, and then invite them over for a playdate (maybe that’s a great time to invite Mom or Dad over for that coffee/wine). You might need to get creative during this playdate. Ask the child’s parents for some tips. They are more than likely very happy to share.
We’ve had so many great experiences with our friends always including Braden and teaching their children to include him as well. Small children absolutely adore Braden and often engage him in their play. He is so good with them. He allows them to ride on his back, sit on his lap, pull his hair. He rolls right on along with it all.
We’ve had some odd encounters as well. I remember one vacation specifically. We were vacationing with many families. While Braden was older than all the other children, he was still in the vicinity of them and clearly watching them all play together. Do you know not one of the children said hi to him or tried to engage him the entire time we were together? It was as if he was invisible. I place no blame on these kids. We all know middle-schoolers are focused on themselves and their own friends, and sometimes actively avoid others; all very normal at this developmental stage. But I had to wonder why their parents, in the privacy of their own rooms, wouldn’t have said, “You know, it would be kind to say hello to Braden.” or “Why don’t you ask if Braden would want to join you in your tag game?” This small conversation could have led to Braden feeling a bit more involved in his own community.
I digress. Back to action. Now the big question. How can an entire community take action? Well, it takes one person at a time. Do you own a business? Consider hiring a person with a disability. It will take some work on your part. You will need to learn about your new employee’s needs and how you can make accommodations to help them feel supported. Discover your new employee’s strengths and use those strengths to carve out a job that is mutually beneficial for you and them. I heard a story recently of a woman who became a quadriplegic after a horrific accident. She only had use of her pointer finger. So what could she do? She was hired at a large corporation to help make copies. Her Personal Support Worker organized the paper into the trays, and she pushed the buttons to run the copier. She was a dedicated employee and loved her job. She was well-loved in her workplace and taught everyone there about inclusion, all because someone was willing to give her a chance, think out of the box, and take action.
Braden is 21 and is soon to age out of his Transition Center. What’s next for him? How will he find meaning and purpose in his daily life? We hope some kind business person will take a chance on him, but more than likely we will need to create something for him. Why? Because the majority of society is not yet at the Action step of the 4 A’s. Not yet. But that time will come, and I do hope that time is soon. Show others what inclusivity means by leading by example. Aspire to help everyone live in a world where we all can live our best lives.
It’s time to level up. No matter where you are, please make a conscious effort to learn more, ask more, appreciate, and take action. 1 in 54 people are counting on you. My family is counting on you. As a society, we have to start doing better.
We have less than 365 days until next April 2nd. By then, I’m hoping we’ll be having a celebration that has nothing to do with broken toilets. And if any of my friends are thinking about making us a toilet cake…well, you’re no longer our friend (LOL)!
I’d love to know what level you’re on when it comes to the 4 A’s. I can’t wait to hear how you’re accepting, appreciating, and taking action. You are all more than aware!
Here’s a short video of our family calling for action.
Check out this video by Sting called “The Hiring Chain.” While its focus is on hiring people with Down Syndrome, the sentiment is the same.