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Having a rather severe non-verbal (some single words or rote phrase) 11 year old with autism, our biggest mystery is how much she does or doesn't understand abo
by fecak 11y ago
Having a rather severe non-verbal (some single words or rote phrase) 11 year old with autism, our biggest mystery is how much she does or doesn't understand about us or about her own condition. Articles like this (again, hopefully written by the subject) help give some potential insight.
Because she essentially has no voice, it's almost natural to talk about her as if she isn't there. As she's grown we've been better about it, but because she doesn't express emotion it's near impossible to imagine what she might be thinking or feeling.
I have several dreams a year where she speaks. I'd expect other parents do as well.
The strangest thing for me is to have a child that has never asked us a single question. We see other families with 3 year olds that continuously ask "Why?" to everything you say. When you hear other parents complaining that their kids won't stop asking questions, I try not to remind them of the alternative.
- autism_parent 11y agoPlease don't give up. My son is 16. He still shows fairly severe symptoms of autism. In all these years, I have longed to have one conversation with him, but that has never happened. However, to my surprise, he is also doing well academically through home schooling. He started out with a lot of prompting but now he can demonstrate his independent skill and mastery on fairly complex tasks - for example multiple choice tests in high school Algebra or English. By now, we know he is highly intelligent, but he has so many repetitive and OCD behaviors it is hard for him to function in the real world. He is learning to program and he shows some aptitude for it - he seems to be somewhat good (not yet surprisingly good) at finding bugs in short pieces of code. Our hope is that as he grows older, he will gain control of himself enough to be able to function in some assistive setting.
- fecak 11y agoThanks for sharing. Giving up isn't an option. We've fully accepted the possibility that we may be supporting her for our lifetime, with the hope we can get her to the point of at least some level of personal independence. I've read several articles related to autism and software testing. We aren't nearly at that level yet, but your son could be a candidate for those programs. Good luck to you as well.
- uf 11y agoHaving Asperger myself and having watched alot of parents I'd like to share a thought. To me the biggest problem seems to be connecting to the outside world. I've also observed children having trouble with this, as it seems they weren't able to filter relevant stimuli to react on: "Do they speak to me? I don't know.. So I'll continue to wait." This is a pattern I'm using as well. However, things I do understand are people reaching out to me very directly with very clear emotions. Difficult and wrong as it may be, I'd suggest including your daughter directly in conversation as often as possible. She may not understand words, but quite possibly she does understand emotion. This may at least ease the disconnection she's already observing.
- fecak 11y agoThanks for sharing your experience, and our experience is similar regarding being direct and clear when we need to communicate something important. This includes removing any distractions from the environment. She does seem to understand emotion sometimes, but inappropriate reactions make it hard to tell. As for examples, she consistently laughs when babies cry, and often when we scold her for any 'dangerous' type behaviors she also laughs. There are times when she will respond appropriately. We are adjusting to include her more in conversation, asking her to indicate preferences, etc.
- uf 11y agoThank you for kind words. I'm not so sure how I can answer your response. I certainly can't interpret your daughters behavior. I'm in no position to do so. Still, your post has deeply moved me and I feel like I can relate to what you're writing. So I'll again share my feelings: I often respond similar when being scolded. It really is exciting to feel such a strong emotion. Or I'm simply happy that I made a connection to the outside. People get very irritated by that.
- fecak 11y agoThanks. I have no expectation that anyone will be able to fully explain what her specific behaviors mean (other than for her to tell me, hopefully, at some point). I can appreciate how someone might be happy to connect or get a reaction, even if the reaction is negative.