Why We Don't Light It Up Blue: Another Perspective on Awareness

April 2 was World Autism Day.  Some may have found it peculiar that we didn’t wear blue or don our puzzle pieces or post a picture of Marshall.

It’s not that I’m against autism awareness.  I hope that those of you who celebrated World Autism Day or who will make autism more visible over the next month are not offended by this post.

The way I see it, parenting a child with special needs has phases.  Yes, there are the normal developmental milestones and stages to work though, just as we do with a typical child, but there’s an additional responsibility that intermingles with those phases and stages-- addressing our child’s disability with them as it becomes appropriate. 

Awareness takes on various forms.  Initially, our responsibility was to be aware of Marshall.  To learn everything we could about him, from the moment he was placed in my arms in the hospital, along the curvy road to his diagnosis and every day that has elapsed since then.  Once we knew his disability had a name, we also needed to become aware of how to help him. To be honest, being aware of autism did not help me parent my child. Getting to know my child helped me parent him.  

As we’ve gotten to know the ins and outs of who Marshall is and how to help him, we’ve had a lot of great advice.  Working with trained professionals was great because they were able to suggest strategies that had worked for other children with similar needs-- some autistic, some not.  And to be honest, many of our successes came from the people in Marshall’s village without titles who just plain get him. As we’ve come up for air after years deep in the throes of the back-breaking, non-stop world of early intervention, our responsibilities have shifted and we’ve entered a new phase: introducing Marshall to his autism. 

One of the things I could never wrap my mind around was wearing a blue shirt with the word autism on it, or passing out puzzle piece keychains to family members, all the while having never introduced the child I was representing to the concept itself.  Setting all stereotypes and struggles aside, Marshall truly doesn’t miss anything. He soaks in every detail of every situation he’s in-- visually and auditorily, and he could read at a young age. We were careful to not talk about Marshall’s autism directly around him until we were ready to address it head on.  This was our choice, and while some might disagree with it, that’s the beauty of parenting -- what’s best for one child might be the complete opposite of what works for another. 

To be honest, I never really set an age for which I thought it would be appropriate to talk to Marshall about his autism-- I figured we would know when the time was right, we would plan well, and it would be a discussion in which Marshall would be old enough to fully understand, ask questions, and generalize the knowledge we shared.  A lot of books I’ve read point to the ages of 10-12. While I wasn’t sure about waiting that long, I didn’t have a sense of urgency to unpack such a complex topic.

Until a little girl started asking about Marshall’s autism.  In front of him.  

When she first started asking questions and using the word autism, I was hurt and offended and a little panicked. (Interesting reaction, huh?) Thankfully, the inner teacher immediately kicked in and reminded me that this sweet little child had no agenda and was only looking for information.  Her well meaning parents had explained that Marshall had autism to help describe some of his behavior differences. This little sweet thing, who I dearly loved, was simply adding to her knowledge base. I answered her questions as best I could and then set to work.  

I knew I needed to prepare to introduce Marshall’s autism to him before anyone else did.

So what did I do?  I went to the library, of course! I knew that there were lots of books for kids about autism that were out there.  I would request them all, read them all, and find just the right one (or two) to use to introduce Marshall to his autism. 

And you know what?  In all of my searching and pooling of my resources, including school counselors and teachers and intervention specialists and therapists, I didn’t find a single resource that would work for Marshall.  While I’m certain that a lot of the books I read may work for older kids or for peers who need to learn about autism, it was almost comical to me what they all had in common. 

All of the resources I found revolved around an extended metaphor.  I literally laughed as I read several of them, imagining my sweet little six-year-old trying to connect the dots.  For a child as literal as Marshall, a story about a zebra’s stripes or a boy’s frisbee wouldn’t quite do the trick. 

I knew I needed to make my own.  I called my friend Heather, one of Marshall’s most important people, and we talked through my lack of findings.  She suggested a social story. Of course! I decided that I would make a social story for Marshall about his autism.  I had the power to create the inner monologue for him. I had the power to carefully choose the first words he ever learned about autism and how it related to him.  And I could do it in a format that would be most appealing and inviting to him: a social story. With photos. On the computer.

I set to work, enlisting a coworker to show me how to best format my book.  We chose Google slides and away I went. I smiled and cried a little as I tried to anticipate how my son’s sweet little brain might interpret this information.  

After a lot of blood, sweat and tears (okay, blankets, coffee, and tears), the finished product was ready.  After showing it to Wes and talking it over, I sat down with Marshall. Not surprisingly, he read through the story repeatedly, asked very few questions, and went on with his day. 

A few times since our conversation, we’ve noticed the fruit of Marshall’s stewing over the subject. We learned that while photos are powerful and useful for most of the pages, the page where I talked about autism needed to be photo free.  Initially, I included a few photos of him doing things that are different than his peers, and he asked if he had autism because he played with the robot that was in one of the photos. I replaced that slide of the book with a link to this video that I tucked away a few years ago.  While it might be a little over a kindergartener’s head, it's the best overall explanation of autism I’ve seen for a kid.  

If you’re heavily involved with autism awareness, that’s great.  We are too-- it just might look a little different over here. We won’t be flying flags or marching in parades just yet.  We’re slowly expanding our sphere of influence beyond Marshall as it becomes appropriate. My hope is, with Marshall’s permission, I might create an adapted version of his social story that he or his teacher could share with his classmates.  But the thing is, if he’s not interested, I’m not interested. 

After all, this is his story to tell and his life to live. Someday, Marshall will have a stake in this game, too.  If he wakes up one morning when he’s 8 or 10 or 18 and asks us to support autism awareness by wearing blue and donning puzzle piece jewelry, we will absolutely do it.  We fill fly the flags and march in the parades and join all the committees with him, if that’s what he wants. It just doesn’t feel like our decision to make at this point.  

Our focus has always been (and I assume will always be) inclusion.  How can we parent Marshall in a way that gives him the best opportunities to function in society with his peers?  How do we help scaffold his interactions with others to support his need to learn vital social skills? How do we leverage his strengths to support his weaknesses? So far, none of these driving questions has lead us down a path of collective autism awareness.

Yet. After all, we’re only 6 years into this game. 

Please know that Autism Speaks is a wonderful organization-- in fact, Marshall’s first preschool received grant money for their aquatic therapy program through Autism Speaks, and we will always be grateful for that opportunity.  I’m never offended when people wish me a happy World Autism Day or want to talk to me about autism awareness month. I’m simply here to say if there’s another parent out there who needs permission to abstain, it’s okay. You don’t have to do it.  We’re all navigating this to the best of our ability, in the best interests of our kids, whatever that looks like. 

Now, inclusion awareness? That’s something I can get behind.