J and I have begun telling our immediate family and close friends about Monkey’s suspected diagnosis and how we are moving forward. The reactions have been a bit of a mixed bag to be honest, but the one constant out of all of them has been “She is still so young, she will catch up”. While I agree that those very words went through my head at times, deep down I think I knew that Monkey was different from the time she turned about 2.
I have mentioned this before, but autism is different in every person who is diagnosed, so these are really just her own unique signs, but these ones are pretty constant.
- Reciting lines from her favourite cartoons (mostly Bubble Guppies and Peppa Pig). This is called echolalia, meaning that she will recite lines from these shows even months after watching a specific episode
- Related to the first one is generalized echolalia. If we ask Monkey something, she often repeats it right back. Our speech pathologist says that she does this because she doesn’t truly understand what is being said.
- SLEEP. She is generally a fairly good sleeper (about 80% of the time), but she take HOURS to go to sleep. She is generally scripting from shows or books but will take 2-3 hours to fall asleep. I know she is not getting the sleep she needs, but right now we are unsure how to help the behaviour.
- Repetition – this is in a variety of forms. I have noticed that she will line up certain toys in a certain order, and if I change that order she gets very upset. She also must close an open baby gate if she walks past it.
- Not responding to her name. At first, I thought this was just a regular toddler thing, but there are times when she doesn’t seem to understand that it is her name.
- Loud singing. She absolutely loses it during Happy Birthday or any kind of group singing and is sensitive in this sensory way.
- Crowds – If she is in a stroller or wagon she is ok, but otherwise if we walk somewhere with a crowd, she immediately retreats and wants to leave
- Playing with other children – She is ok playing with 1 or 2 other children, but any more than that and she retreats and plays by herself
I could go on, but these are some of the things that she does that are red flags for an autism spectrum diagnosis. Some people assume what this will be “fixed” or “cured” because she is so young. While we will do everything that we can to help her get the help she needs, I know that this is a life-long condition. Nobody is cured from autism, but rather uses tools to help them function with their autism. Once we figure out exactly where Monkey is on the spectrum, we will have a better idea of how to help her specific delays and encourage her strengths. It is hitting me that this is a life-long condition that will evolve as time goes by. So, obviously, the therapies will need to be constantly monitored and changed as she gets older. It is overwhelming to think about. Right now, my focus is ensuring that we can do everything we can to have her start school next September. It is hard not to wonder farther out from that though. She will be different, but not less.