Signs and Stigma

 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.

  1. 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
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. Loud singing. She absolutely loses it during Happy Birthday or any kind of group singing and is sensitive in this sensory way.
  7. 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
  8. 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.

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3 thoughts on “Signs and Stigma

  1. Sleep is the nirvana of every parent, and unfortunately with ASD, it can be very elusive. There are a number of sensory things you could address (eg, routines, weighted blankets, no light / noise in the room, etc), as well as a number of physiological issues. A lot of parents have found the use of melatonin to be a life saver – it doesn’t work for us unfortunately. There can also be issues with silent reflux which can keep kids awake (speaking from experience) or other tummy troubles which can be helped by changes with diet. I’m happy to email privately if you’d like some more ideas. 🙂 And I still remember our family telling us, “he’ll grow out of it – his daddy didn’t talk until he was three”! martina@recoverychoices.com.au

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      • My ASD kids never slept in cots – they hated them with a passion and started climbing out of them by the time they were six months old. 😉 So I’ve never had to worry about transferring them to a big bed. With my NT son (with a lot of ASD issues) I did it gradually – he actually had a crib where we could take the side off, and transfer it to a ‘bed’, sort of a transitional step before a big bed. He was sharing a room with his next older sister so he was used to seeing people sleep in a bed. Perhaps you could set up the bed in her room already? And if you can find ‘big girl’ sheets with something that she LOVES on them, she’ll probably transfer more easily. If she doesn’t like the idea of it, you might be able to persuade her using whatever currency works for her – eg, if she loves something in particular, reward her for that with every hour (for example) that she spends in her big bed. Whatever might work for her. Perhaps even just the ‘reward’ of having mummy be able to lie down with her and have a cuddle might be enough – just be careful you don’t get stuck with that every night then lol.

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