It is a rare day when I venture out shopping or to any public event with Luke. It is something I really would like to be able to do with him, but stores and public places are high risk environments for meltdowns -public meltdowns that traumatize all of us.
We usually catch Luke’s meltdowns early enough to remove him from the environment before you would notice that my son is experiencing an autistic meltdown. However, he sometimes is triggered unexpectedly and rapidly moves from rumbling to rage. In these cases, he is probably down on the floor,kicking and screaming. He generally perseverates on a phrase – repeating the same thing over and over. He will try to break or tip over anything in his immediate area. If we can’t remove him from the area, we have to move stuff in his area to avoid damaging property and prevent injuries. To the casual onlooker, it probably resembles a massive temper tantrum that one might see from a toddler. The difference is that he truly cannot control himself; he loses his ability to reason.
Although the vast majority of people are very understanding and empathetic to our situation, I have had many experiences with people whose reactions to Luke’s meltdowns have been, shall we say, less than helpful. So, here are some suggestions of what not to do. All of these are based on real reactions I have seen while I manage public meltdowns with Luke:
- Try to connect with me – While I truly appreciate your understanding heart, I really cannot sit and chat about your nephew who also has autism. I am on high alert trying to protect Luke, store property, and other people from getting hurt. It is impossible for me to engage in a discussion about the challenges your loved one also faces. I know your desire to connect with me comes from a good place, but right now is just not the time.
- Offer me a tool to discipline my boy. This happens almost every time we experience a meltdown in public. I know this is usually done in jest, but it really is not that funny, and the message you are clearly communicating is that Luke’s behaviors are the result of my failure to discipline him. So, no, I don’t need your cane, your paddle, or your stick. I don’t even need your offers to, “Take that kid out to the shed,” for me. If these are your suggestions, please button your lips and just keep walking.
- Play 20 Questions – I get it. It isn’t every day that you see an 11 year-old rolling around, screeching on the floor. I don’t mind if you need to ask why he is doing that, but please don’t keep peppering me with questions.
- Coach me through the situation. Even if you are a professional behavior interventionist, unless you have experience with my son specifically, don’t tell me what I should be doing to manage Luke. In the entire 5 minutes you have had to observe and analyze my son’s behaviors, I doubt you have come to understand him and his motivations better than I do.
- Get between me and my son. Seriously. He isn’t going to respond to the shushing and petting of a stranger, and he may go after you. He may break your glasses, scratch at your eyes, bite, kick, etc.
- Offer him candy. While bribery can be a powerful tool in the arsenal of parenthood, this is not the time for it. Luke has a very keen emotional memory, and his meltdowns are very emotional for him. I do not want him to associate this negative emotional experience with a high value reward like candy.
- Gather to watch. This seems like social propriety 101, but we don’t need an audience. Believe me, I am already humiliated by the scene we are creating. Please, don’t make it worse by forming a crowd. If you must watch, could you do so somewhere out of sight?
- Share your passive-aggressive comments. I get it. We have destroyed your peaceful shopping experience. I am deeply sorry already, I don’t need to overhear your comments about, “this generation of entitled children,” (who manipulate their parents like this) as you pass by intentionally within earshot.
Public meltdowns are such a challenging part of our autism journey. I have discovered they bring out the best and the worst in the general public. While I have highlighted a few of the less positive reactions here, some of the most beautiful examples of caring have happened amid these harrowing experiences. (See my post, “Folks Who Get It.”) A simple word of encouragement can help ease the tension. One understanding mom simply whispered, “Keep fighting the fight. You’re doing fine.” Such simple reassurance is all it took to bolster my spirit to endure the public eye of scrutiny.