At the beginning of the month I mentioned that April is Autism Awareness Month and wrote a little about what autism actually is. Last week I wrote another post related to autism, but as you may have noticed, I did not post it. For whatever reason, it didn’t sit right with me and I didn’t have the time to come up with something else.
I have spent a good deal of time trying to figure out why it is that I am having such difficulty getting another post on this topic together and I believe I have figured out the problem. Last week I really wanted to put a face to autism, to show what it looks like in reality. I want to show how wonderful these children are and how the extra challenges they present are part of what makes them so wonderful. I want people to have patience with them and not judge them when they are having a difficult time. I want people to understand that in order to improve the behavior the parent or therapist may have to let it play out some.
The problem is, I can’t think of a way to do this without sharing specific stories of the kids I have worked with and, even with changing names and identifying information, this is not something I am comfortable with. I am going to try to talk about my experiences in a more general way, hopefully it works this time.
I have had the good fortune to work closely and develop special relationships with 7 different children with autism. All 7 children were incredibly different from each other and all 7 children were incredibly incredible. Each and every day one of them would do something to make me laugh or make me smile or melt my heart. Each and every day one of them would also do something to make me want to pull my hair out or scream. But I still loved them and all I wanted to do was find a way to help them.
Most of the children I worked with veered towards the middle or low functioning end of the spectrum. Communication was really difficult for them. This resulted in a lot of frustration on both sides as they tried to figure out ways to express what they wanted and needed while I tried desperately to figure it out. Sometimes we could figure it out together and sometimes the frustration would boil over into a tantrum. Sometimes these tantrums would happen in public.
One of the big things I worked on with my kids was being able to go out in public and behave appropriately. I would take them to places like the movie theater, out to eat in restaurants, to the store, etc. More times than not these outings went well, but sometimes they did not. In a way, this was good. I wanted the kids to have whatever challenges they were going to have with me so that I could shape their behavior and help them be able to tolerate and, hopefully, enjoy the outings so that they could participate with their families. This meant that I had to deal with the behaviors head on rather than escaping from the public environment as fast as I could. That was not always easy.
When you have a child screaming and thrashing about, people tend to stare and, on occasion, say something rude. As I am sure you can imagine, this does not help. As a therapist, not a parent, it was easier for me to ignore rude people, but all I could think during these situations was how hard it must be for the parents when the looks and murmurs are directed at them and their child. Those people passing judgement don’t know or understand the truth of the situation. To them, you are a bad parent and your kid is a brat. That is a hard pill to swallow, especially when you know that nothing could be further from the truth.
This may seem like a strange thing to talk about, but it is something that I think about a lot. I just love these kids so much and to see people look on them with judgement hurts. They are so much more than their behavior difficulties and I want people to see that. I want people to stop before passing judgement on a parent struggling with a child and acknowledge that they do not know the circumstances surrounding the behavior. I want people to give these kids and their parents the benefit of the doubt. I can’t tell you how many times one of my kids would pitch a royal fit the first time we tried a new activity only to grow to love it after being able to work through the behavior on several tries. So many kids miss out on this because of judgement they and their parents receive. This breaks my heart.
I hope that I haven’t come across as too soapboxy. I think it is obvious that this is an issue close to my heart. Now, I do understand that there is a limit to how much you allow a child to act out inside a restaurant, a movie theater, a library, etc. Sometimes it is necessary to take the child outside and help them calm down before returning and discretion must be used to determine what that threshold is. But the fact remains, a little tolerance and understanding from the bystanders around you can go a long way. You just never know if the child screaming a few tables over is a Dudley Dursley or a child doing the best he knows how with the toolset he possesses.
What do you think? Have you ever had an experience like this out in public? How did people react and how did those reactions affect you? If you haven’t experienced this personally, do you know someone who has? Or have you ever witnessed someone going through this? Let me know in the comments. Also, be sure to check back Friday for a very special guest post.