Do all parents with severe ASD children want a cure?
I don't have much insight, except that if you talk away to him hopefully he's picking it up. That's what I wonder about with my 14 year old. I wonder if he understands a lot more than he can show for some reason. I don't know what that reason would be, but I am pretty sure that he does understand at least a little bit more than he responds to. He actually only responds to 6 commands consistently (stop, come, sit, stand, wait and go). But then occasionally I'll say some long sentence, and he'll just do it... and I don't know if it's a coincidence or what. The other day I said "Put your plate on the kitchen counter please" because I still talk to them in sentences but I don't expect a response necessarily...but he did it! So I think it's more complex than him just only understanding 6 words.
I don't have much insight, except that if you talk away to him hopefully he's picking it up. That's what I wonder about with my 14 year old. I wonder if he understands a lot more than he can show for some reason. I don't know what that reason would be, but I am pretty sure that he does understand at least a little bit more than he responds to. He actually only responds to 6 commands consistently (stop, come, sit, stand, wait and go). But then occasionally I'll say some long sentence, and he'll just do it... and I don't know if it's a coincidence or what. The other day I said "Put your plate on the kitchen counter please" because I still talk to them in sentences but I don't expect a response necessarily...but he did it! So I think it's more complex than him just only understanding 6 words.
My son has occasionally followed 2 step directions, too... Like "go put your cup in the sink" (when cup is not in his hand) and he will do it. RARELY. Then, he won't ever follow single step directions for the next several days and it drives me nuts.
The lack of receptive language freaks me out a lot.
Vivaldi: Excellent taste!
We dance to music together and he smiles socially.
His problem is really more cognitive delays and lack of language, than anything else. He tolerates transitions remarkably well, and has a friendly personality - which is why his preschool believed that his problems were more "intellectual" than anything else.
If he has a cognitive delay--couldn't it be that it is, after all, a DELAY, and that he will attain certain milestones at a later date? Like being able to communicate with you verbally or even via something like PECS? What you describe...is a CONNECTION...a real CONNECTION. He RESPONDED to you.
Even people with something like Angelman's Syndrome, while they are usually severely cognitively delayed, can usually take care of their basic needs and communicate well (though not via speech, usually). Their receptive language is better than their expressive language. They tend to walk at something like 6 years old, and be toilet-trained at like 10 or 12 or so.
Vivaldi: Excellent taste!
We dance to music together and he smiles socially.
His problem is really more cognitive delays and lack of language, than anything else. He tolerates transitions remarkably well, and has a friendly personality - which is why his preschool believed that his problems were more "intellectual" than anything else.
Well that's great that he interacts with you like that!

That's definitely showing potential to learn.
Yes, when we dance together, it is a real connection, as when he smiles socially. But the social smiling is very rare, to be honest, and it is never reciprocal. More often than not, he will ignore my smiles... It is still on his terms. BUT, he does smile socially.
I don't know if he will catch up with his cognition or not. That is the hardest thing with autism - no one has a crystal ball to spare, unfortunately. He has only just begun to get the concept of pictures so that is another route to explore. But he didn't get the concept of signing at all. So, I am finding it hard to get my hopes up.
Autistic kids are notoriously stubborn. There will be light bulbs that go off, especially if you continue stimulating him. The problem is the unpredictability. I would be frustrated by the unpredictability as well.
Maybe he'll see something on Vivaldi while hearing his music, then (because it is his inclination), want to learn about Vivaldi. Or even about music. You never know with autistic kids, really. One might show severe symptoms, yet unexpectedly know something. They make connections. There's lots of instances of that in the literature.
I'm wondering if instructional tapes, made available to him (you might not see him reach for them for a long term--but one day, something will click, and he will want to look at a tape).
There are so many things available for autistic kids that were not available when I was young. All we had was cue cards and peg boards and the like.
Music & movement therapy might be something to get him into. My kids have done a camp for several years in the summer where they put together a musical play by the end of the week, with different routines and songs, and throughout the week they also do swimming. (I think the minimum age is at least 5 though). That kind of thing could be really great for a kid who likes to dance to music! It would incorporate those things he likes, but also require him to follow some directions. (The camp I'm thinking of has 1:1 aides for the kids who need a lot of support).
My youngest (who now talks) didn't either at that age. Then one day he did say a word ("ball") and he started saying more words but he'd only repeat after you, so they told me it doesn't count because it was meaningless. He did that completely echolalic thing for 5 years (like I said, until he was 10). Of course in that time period I thought that was all he was ever going to do- his therapists that was all he was ever going to do. ("What do you want?" "What" "Apple?" "Apple" "Yes?" "Yes" "No?" "No"... Not helpful). And then one day he just said a word on his own. I almost died of shock. Because who would have thought at 10 he would get it? I was told 7 years old was the absolute cut-off for language acquisition. That's obviously not true. Anyway, point is, don't give up yet. I wish you luck
I think it is ignorant of them not to count echolalia. It is a stage of speech. It may not be original speech, but it playing with speech. If babbling counts as a legitimate stage of development, so should echolalia, (Sorry to go off topic, but that pisses me off.) Echolalia is a very common intermediary step and I think they would be surprised in how sophisticated it can be.
Yes, when we dance together, it is a real connection, as when he smiles socially. But the social smiling is very rare, to be honest, and it is never reciprocal. More often than not, he will ignore my smiles... It is still on his terms. BUT, he does smile socially.
I don't know if he will catch up with his cognition or not. That is the hardest thing with autism - no one has a crystal ball to spare, unfortunately. He has only just begun to get the concept of pictures so that is another route to explore. But he didn't get the concept of signing at all. So, I am finding it hard to get my hopes up.
If he is smiling socially, then that is a pretty big thing. The dancing is too. Those are social cognitive skills.
daydreamer84
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@-His mom- I know/knew a boy diagnosed with autism ( I haven't seen him in about 5 years now ) who first spoke when he was 6 years old. Until then he reportedly did not speak one work but would make the noise "uhuhuhuhu" and bang his head on the floor. He also didn't make eye contact at all until age 6. Then at 6 he looked at his brother and said something, I forget what he said if I was ever told but it was a single word. When I knew him he was 10 years old. At that age he did have an intellectual disability but it was moderate, not severe. He was in a special ed program but could do some basic academic work and he communicated relatively well. He could use speech for communication and ask for what he wanted and he could use full sentences that were understandable (not always the right syntax though). He had decent receptive language and would sometimes respond to his parents' or brother's requests but sometimes ignore them, he had problems paying attention. He had a connection with his mum and a a very strong connection with his brother. Whenever his brother came in the door he'd give him a huge hug.
He will be 5 very soon, so movement & music camps might be a great idea for him ! I will pm you for more info. I am beyond desperate !
Thank you ! !! !!
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