How do we talk about Autism in our families when we’re out in public? Do we identify it to everyone whose paths we cross? Do we hide it and hope no one notices? Do we have business-type cards on hand with an explanation in case of a public meltdown? I’ve seen all these strategies. I just haven’t figured out which one works best for my family.

Just recently, on one of the Autism parenting forums I’ve joined online, a mom was asking if we thought it was okay to let her three-year-old with ASD have his tablet at her wedding. She was so worried about judgment from her guests – guests who are supposed to be her and/or her fiancé’s closest friends and family. There wasn’t a single parent on the forum who discouraged it. It was a resounding – and very loving – response: give him what he needs to feel safe, in control and happy. We ASD parents know it’s not about being addicted to video games. It’s about control and comfort. I felt so sad that this was her biggest worry for her wedding day.

When my son, Zack, was 3 we went to my oldest son’s school carnival. It was pirate themed and included actors walking around and interacting with families. At some point, my husband was off playing games with my oldest, Josh, and Zack’s twin brother, Luke. All Zack wanted to do was jump in a bounce house where there was a huge line and a time limit. After finally getting his chance to jump, it was nearly impossible to get him back out. I eventually had to climb in and haul him out. The looks I got from other parents made me feel like the loser mom President of Loser Mom Town. To them, I had a bratty three-year-old that didn’t understand “no.”  As I was carrying him away from the bounce house, he was flailing his arms and legs and almost knocking us both down. I put him down because I really didn’t have any other choice. He immediately laid on his back and started kicking the air, screaming as loudly as he could.  Luckily, the noise of the carnival drowned out a lot of the volume. Truth be told, the noise of the carnival was also contributing to his meltdown.  

Wouldn’t you know our luck though? Right then, one of the pirates walked up to us, sneered and pointed to Zack. He looked at me and said, “That child is having a fit!” Then he stood over him and shook his head dramatically. Now I know this was part of his act, but it cut like a knife to my heart. Nonetheless, I played along to save face. I smiled, rolled my eyes sarcastically and launched a few tickle rockets into Zack’s belly. Zack laughed and the pirate walked away. I hauled him up again, strapped him into our double jogging stroller and went searching for the rest of my family. I was practically in tears when I found them. I quickly explained what happened and told them I was taking Zack home. 

Then and there, I vowed never to bring him anywhere with a bounce house again. Of course you know as well as I do that wasn’t going to happen. Every weekend there’s a bounce house somewhere in our neighborhood. At that moment though, I was ready to live the rest of my life from inside my house.  

So, how do we cope with others’ reactions to Autism in our families? It really isn’t about encouraging tolerance. It’s about facilitating understanding. Not many people can recognize the difference between a child’s tantrum and an Autism meltdown. We may see it within our own families, but few people understand what’s happening if they have no personal experience with it. So, how do we educate people? How do we help them understand? I believe if they knew what was going on, they would be much less likely to judge. They would give us space and/or offer help with kindness and empathy. If the staff understood that day at the carnival, they might have said, “Hey, let’s go explain to the person in charge of the bounce house that he has Autism and see if they will let him jump for a longer period of time.” Or someone might have pointed out the shady tree out in the field that would be a quiet open space to calm down. None of that happened though, because no one understood what was going on. It’s not their fault, but the appropriate training might have made all of the difference for our family that day.

Thankfully, we rarely have an outing like that anymore, as we have many strategies for helping Zack feel comfortable. This has come a little easier for me as a trained Special Education teacher, but not everyone is as fortunate as our family to have this kind of expertise available to them. For example, if we are going out to dinner, we always have a full arsenal of strategies to support us. We bring a tablet, though we don’t offer it from the start, and sometimes we don’t need it at all; but being judged for it is better than explaining a mega-meltdown that might otherwise occur. At all times I also have several sensory toys that can fit in my purse along with a pack of Bel-vita crackers, Zack’s favorite. These are our lifelines. We just wish people understood more. Maybe they could even have some of those things on hand in case we forget one – not to run in and save the day, but to recognize a need and gently offer up something to help. 

So that brings me back to where I started. How do we – as parents, siblings, and caring friends – talk about Autism in our families so that we can help others understand?