Thursday, February 18, 2010

Not saying 'not'

since thinking about T's struggles with the word 'or,' I've also been wondering (not for the first time) about how he expresses negation. If Simon approached him and he wanted Simon to leave him alone, for example, instead of expressing that he did NOT want Simon to touch him, etc., he would say "want Simon to run." It's true he often says "don't want any" if I offer him something, but I think it's scripted, just a memorized phrase. I coached it by saying "you don't want any?" every time he rejected something (this took probably months, by the way). After many months of effort, he is starting to be able to use the word 'no,' but I suspect this may be scripted too. I made up games and songs and stories involving things I knew he already knew the answer to. I pointed to something blue, for example, and said, "is it orange?" "Noooo." "is it purple?" "Noooo." "Is it blue? Yes! Yes, it is blue!" I did with other things he loves and knows, like letters and numbers. Also names of people. Animals. Really, anything he knew the label for. But even when started to get that right, he didn't immediately get how it applied when I asked him, for example, if he wanted something. He's getting it now, but it has been hard.

And so I guess, in case there ever were any question about it, that T really does have autism. I found an abstract to a 1978 article called Linguistic negation in autistic and normal children:

"Young, severely maladaptive autistic children with some speech competence were compared to normally developing 3-year-old children of lower and middle class and 5-year-olds of lower class on negation tasks. All subjects were shown 12 sets of cards depicting negative contrasts designed to elicit semantic categories of nonexistence, denial, and rejection and were tested for production, imitation, and comprehension. Syntactic and semantic analysis revealed that autistic children were superior imitators and poor producers but showed skills in comprehension comparable to a 4-year-old's level of functioning. While retarded in some functions, the experimental group produced syntactic structures that were more rigid, suggesting the significantly greater use of imitation as a major strategy in linguistic coding."

I could have gone all day long without seeing the word "retarded." Do you know what I mean? Ah, the good-old 70s. While the grown ups were talking about love and peace, some of us lived in mortal fear of being accused of riding to school on the "special bus." Ah, third grade.

But I digress. (Who me? never!)

So, I try to find out more. I seem to have bitten off more than I can chew, yet again. I got this tantalizing power point in which every other word is some sort of specialized jargon. Oh, if only I could just download some sort of glossary into my brain so I could read this stuff. But I learn there is something called "intraverbal" behavior that these people seem to claim is somehow teachable. I think? and it's related to having problems with negation. Maybe some day I can figure it out.


  1. i do that too try and switch things up and say the wrong thing to get him to realize its wrong and so he can say no

    i dont know though it is very hard

    have you gotten to pronouns yet
    i have no idea to handly the pronouns
    he cant get it for some reason so the way he says sentences is different

    how do you ge them to understand

    he uses third person to talk all the time and then how do you ge them to understand other peoples name is i say what did eric do today for a friend of his he has no idea who i am talkin about unless i can point to the person
    i know this is long
    but i though maybe you knew how to handle some of these situations you seem very educated on all of this

    thanks for any info and good luck in this journey

  2. Gosh, Bee, I wish I really did know all this stuff. I am trying really hard, but I don't feel very educated, I have to tell you. My typical son, S, is really starting to get pronouns just now (they will turn 3 next week). He has tended to refer to himself as "you" (because of course everyone calls him "you" -- it's incredibly cute)! But we've been teaching him to say "I" instead simply by constant correction, and it's working pretty well. T has tended to use the third person a lot, especially if he's just describing what he's doing. Probably because that's what I did for a really long time. You see, we figured out shortly after diagnosis that he did not know that T was his name. When we asked him where T was he pointed at his brother. Not sure entirely if that was autism or just a twin thing. But we had to do a lot of work there. When we looked in the mirror and asked him who that was, he would say S. He also would identify babies on diaper boxes, etc. as S. So ... I spent a long time referring to them (and myself) by name so they would get it. And while I was trying to teach him how to talk and trying to simplify things, I did a HUGE amount of verbal mapping of his activities. (i.e., "T is going through the door! T is going through the window! T is coming down the slide!") So it's not too surprising that he still does that for himself. Sometimes he'll say (to himself) "T is eating a sandwich." Except a few months ago he started pretending he was other people or animals, I kid you not. Whoever had been in our latest books (and in some cases videos, although we have very severe limits on video). One day he said, for example, "the bug is opening the door," while he was opening the door. it was hilarious. anyhow, T has recently started calling himself "you" like S does. I'm actually kind of thrilled that he is imitating his brother. But I feel like I have to correct S, because I don't want his speech to get too far off-track on account of his brother's problems (S is actually already a little behind, probably for that reason), so in correcting S I have also been lucky enough that T has been picking up on it too. However, I can't tell to what extent he "gets" it and to what extent he is learning little mini-scripts. i.e., he has learned to say "I want ___" but of course that doesn't mean that he really understands "I." Now S has been really trying to learn he and she. He actually referred to T as "she" not long ago and I had to correct him. I tried to explain about hes and shes but I'm not sure if he got it, or if T got it either (of course T was there for it). They did keep repeating for a while "T is a he and S is a he and Daddy is a he, too!" But I'm not sure if they got it. At one point, to be honest, I just flat out told them that boys have penises and girls don't, because I couldn't think of another way to really explain it. Hopefully that one doesn't backfire on me, LOL! This is turning into a really long comment. I wonder if it will even accept one this long? I'm going to break here and write a second comment on the Eric thing.

  3. OK -- I am not sure how well T understands about proper names because we have a very limited circle of people right now. he seems to (mostly) know who Mommy, Daddy, S, Gramma and Gigi (his other gramma) are, plus a few other people, so I think he's doing okay. However, he occasionally does seem to still confuse himself with S. But a while back (end of summer, maybe?) he was having an issue where he seemed to think that all little boys (in a certain age grup) were Austin and all little girls were Zoe. My husband is a piano teacher, and these are 2 of his student's names, plus we met a little girl at the playground named Zoe. So when he was really just starting to talk (last summer), he would point at strange little girls in the grocery store and call them Zoe. I wasn't sure whether it was a face recognition problem or something else, but I don't think he has that problem anymore ... EXCEPT ... that every now and then it will crop up. About a month ago he pointed at a strange woman and called her gramma. So I don't know if that's an autism/language disorder thing or something he'll grow out of. I have to say, I can't recall S ever having any problem like that, so I guess it's likely part of the whole autism/language disorder thing. I strongly recommend the mislabeled child if you haven't read it yet. I'm planning to go back to it myself and re-read the chapter on language disorders. I glanced at it yesterday, and there is a special section on these kinds of problems, and they mentioned something about Proper Nouns being stored in their own special part of the brain! So if our kids have a hard time with proper nouns, what does it mean? that that part of the brain isn't working? that the connections leading to that part of the brain aren't working well (most likely, I'd bet, if they have autism)? I don't know. The Mislabeled child has specific suggestions for how to help kids with these problems, but I can't recall them to be honest. Maybe I'll blog about it soon. I would also try to figure out, if I were you, whether your son can identify Eric if you say, "Where is Eric?" Does he then point to Eric? And if you point at Eric and say, "Who is that?" Can he come up with the name? Those are such very different things. And I would want to know if he can point at Eric when Eric is in the room, but then if Eric is gone he just can't recall him? It's kind of like the way sometimes you need something to jog your memory, but that's different from the memory just not being there. so I'd dig into that and maybe try to sort that out. Does you son see a certified speech therapist or are you all on your own?

  4. thanks for all the info
    rewards dont work he just doesnt really get it yet
    he is 4
    he is getting the alarm for easter so ill let you know if it works his gram is buyin it for an easter present and candy of course lol

    he has sleep apnea so it could be that keeping him up we have had all the sleep studies done
    so we have just learned to live with it and take it as part of autism

    the melatonin i have looked into but i dont like how it really messes with your levels
    i worry that its just another extra med that im giving him and i dunno i hate adding new stuff he takes so much already
    my neice with adhd take melatonin every night and my sis swears by it but i just dont know maybe as he gets older she didnt start it with my neice either till around 7 and she is 10 now and its just like a vitamin for her she takes it sleeps and thats been it
    so im happy for my sis and im sure by 7 we will be trying it if he is still not sleeping right

    im sorry i actually never looked until now to see you have been commenting back on here sorrry
    i have to read them now and catch up sorry

  5. he has a speech therapist an hour a week
    which tries to help with these issues but it doesnt seem to be going anywhere
    he cna say some huge sentences right now but im not sure he is understanding or if its just repeating ya know

    the name thing is weird
    we just got a new tss a couple months ago our old one was named MICK
    and the new one is ERIC

    he still calls eric mick alot of the time after a couple months of saying no this is eric and the kids at school he doesnt comprhend that they even have names it seems like
    mom and dad he has and gram and stuff like that but
    i'll ask who is this when pointing to eric and he will either say mick or ignore us or call him bryan i dont even know where he comes up with soem of the names he has called this poor guy
    he does it to his bsc christina he calls her mary stacey

    any name when you ask and if you do this about 5 times he willl then get your name right but
    i dunno
    its all very new to me cuz he did understand mom and dad so this not knowing names or naming any name is very new to me cuz with mick he had no problem but he laso was so close to mick hugs kisses honestly loved this guy probably as much as mom and dad
    mick got engaged on xmas and moved 2 hours away to a new house and will be marrying very soon so thats the only reason he left or he could have been with us for years

  6. please don't apologize! sometimes I can't do blogs for weeks at a time, and I don't always get notified about comments either. As for the melatonin, I would feel more comfortable giving it to a girl, I think, because one thing that makes me nervous is that it does suppress testosterone. So they did one study with really young male pigeons, and it caused them to wind up with shrunken gonads. Yikes! But they gave them a lot of it. So, I feel like once a week or so maybe isn't too bad. Also, you have to decide whether you think he's making any or not, because of course he is supposed to get some every night, it's a really super powerful anti-oxidant and pretty important, so if he's not making any, then maybe taking some is a good thing! But that always takes me back to trying to figure out if he's already making some or not! And it's hard to tell. I'm sorry you did sleep studies but they didn't help you. Is there nothing that can be done for the apnea? Sleeping more propped up or something like that? I have a nephew who had apnea but I thought they did something to fix it. Boy I'll bet apnea must be rough, because if you don't breathe well at night it makes you so tired! But, you know there is a lot you can do like I said to boost melatonin naturally, so you might explore whether any of that will work for you. The thing about the whole melatonin theory that I find really compelling is that the input that turns melatonin off and on actually comes from the eye, from these special sensors in the retina ... if they see blue light, they tell the pineal gland to turn off melatonin (so you're not groggy in the morning), and when the blue light goes away (because the sun goes down), they turn it on again. But I've oftend wondered if, because our kids are often extra light sensitive, wouldn't they be extra sensitive to blue light as well? I should say that you can get sleepy without melatonin, because there is this other thing called sleep pressure, which is different, but it doesn't kick in until you are really fatigued, so you would never really get enough sleep without melatonin, I don't think. btw, they also make special glasses that block out all blue light, so as to boost the melatonin production, but I don't know if you could get your son to wear something like that at his age. they're also REALLY EXPENSIVE! But it sounds like maybe the apnea is a primary culprit here. Poor guy!