Double Talk

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I went to an ASD lecture tonight. It proved wonderful because I met a lady I met before at a speech therapy session, her son is recently now DX'ed AS. I also met a long time online friend after some cat and mouse games to feel out if we where who we thought we would be. We both hoped to meet up, but then could not recognize eachother!

Anyway, it was a useless lecture, no real new info, and because you had the whole ASD spectrum, it was hard to really get a feel for what services where available or would be helpful for your child. I honestly don't think my son would qualify for ABA or IBI from anyone, he is too high functioning!
Ironically, I think the four years he was at home with me did a lot of ABA in an "unofficial way".

The thing I find frustrating is the double talk. On one hand they say that people with an ASD will not improve or change, yet then they show how a certain group responds so favourably to treatment! On one hand, they give an example like "your child does not share things with you. When he comes home from school, he has an award in his bag that he won. NT children would be very excited about it, they would want to share it with you, and would run into the house and show you. If your child has an ASD, then you won't find out about it until you check his bag!" "Generally you always have to physically check their bag to see what they have done, what they brought home for you to see".

Well, I agree with this, and I disagree with this. My son frequently forgets to pass me notes, show me work, tell me about good things / bad things that happens in his day. He has done really well on assignments and I don't know until I check his bag. He also does not check comments on assignments, seems ambivilant in some ways about what the teacher "thinks" of his work.

On the other hand, in the last year he has learned to come home and tell me important things. He has learned to show me things he has gotten most of the time that are unusual or exciting. Once he won a helmet, and he burst into the door excited about it, could not wait to share it with me! So, I made a comment "But they can LEARN to share things with you over time right?" And I am pretty much told "no". Apparently you can teach them the behavior, train them to show their work, hand over things that are important. But you cannot teach them to do it with meaning, or to genuinely WANT to share it with you! This seemed like a really strange assumption to me, and not one I totally agree with. Sure, it took years of explaining to my son that I wanted to share in his life, and that getting notes where important, and that I wanted to see awards and good assignments becuase it was exciting for a mom to see her child do well, and I wanted him to share the bad stuff and the failed assignments and tell me about the bullying, because it is my job as a parent to help look out for him and be there for him. I think we have made real progress! My daughter at 4 won't let me leave the school grounds without wipping stuff out of her backpack, my son took another 6 years to get 1/2 way to that point, but does he now when he shows off the helmet he won, or share with me an art assignment he liked, WANT to share with me the same thing? Is he not looking for a form of validation from me? Is he not wanting his mothers approval just as my daughter does?

Yet it seems like this is what ABA uses, positive reinforcement. It is not always just a candy or a bribe or a treat, but also just a positive comment, and example was given that when you are positive about a desireable behavior, then it reinforces the behavior... So does not mean that the ASD child does indeed, WANT praise, to get validation, to feel appreciated, to please?

It just seems like with the whole ASD thing, we talk in circles... Do these children not learn to share their lives with others and genuinely WANT to do these things, just it takes them more years then the average NT counterpart and maybe they will never have the same intensity in their desires this way?

Is this all related to theory of mind? Can't an ASD child learn at least some TOM? Maybe never to the same degree as there peers, but to say they don't at all, then how does ABA work?

I am confused...

I think the "Theory of Mind" is crap. It's a device to deviate autistic style of thinking and expression. I'm not sure why Simon Baron Cohen hasn't retracted this.

But yeah, that speaker is assuming a lot. She's touting herself as some kind of mind reader.
ABA therapy teaches and reinforces aping, and is very limited in what kinds of things it can teach. A child would have to know how to classify his stuff to determine whether it's appropriate to share and further to predict that you will be happy with his sharing of it. That is not aping, especially for an autistic.

I think what you're hearing as "double talk" is the cautious way they are skirting the issue of "cure". I think experts are attached to the stigma of autism. It doesn' matter if an autistic learns a skill in their own way, "if they're still autistic, they haven't improved".

It was very confusing... They had charts and graphs showing how certain children benifited from the ABA, others that did not. They would take a key skill that the ABA was supposed to teach, and measure the "progess" of said skill. Some children benifited greatly, others showed no improvement, a few very marginal, others got worse. It is impossible to say if these children who did not improve or got worse, or only improved a little bit, would indeed have had the same result with no therapy.

Basically though, it shows that yes, they can improve with help, they can "learn" these things. I know too I keep hearing that they can "learn" some social skills. They may learn from classes, or even just being around NT kids. But then they seem to take it back, and say that they can't "learn" it, they will always have TOM problems, they will never relate to others, they will never want relationships. So what is it? Can the HFA or AS child learn this sort of stuff or not?

Basically it sounds like they think you can program a child to get through a social interaction like buying groceries. They will learn when asked "So, hows it going?" to say "fine, and you?" but they won't understand "why" this is what you say. It is like "we can teach these kids the mechanics of social interactions, we can teach them how to physically go through the motions, we can teach them to be little parrots, but they never will understand why we do these things, what is wrong with doing something different then the expected norm, they will never want to build a real relationship, to share their life with someone else, parent or partner or friend later on in life."

Again, I agree there is probably I life long impairment in these areas, but to say they will make no progress in the meat and potatoes behind social relationships? That just seems like crap to me...

crap 2
ABA 0

that is how I learned to function in an NT society, EarthCalling. I was programed to learn to answer back with the (to me) seemingly meaningless "fine, and you?" and the 'why' varied from encounter to encounter. Your imagery is perfect, because I became a "little parrot" and I did understand the why, but it was not the same reason that NTs do it, but to survive in a world where NTs ruled and I was hungry and needed a place to sleep and if I performed as they bid, I was nourished and sheltered. They drove a hard bargain, but I was trained.

There was no talk of Theory of Mind, no special education, there was no concepts of being fair to the child. there was a job to do and all children were different, some were just more different than others but all of them had to conform to function in society or they were placed in institutions, attics or in rooms with the windows nailed shut.

and so now, 40 years later I can function in a world of NTs. What were my parents and teachers supposed to do other than create a 'little parrot"?what was the alternitive? did they think they could TEACH me to make it matter to ME to perform that way?

Asperger's Syndrome is rare, really, and rarer still in 1950's in Middle American Boeing Aircraft boom town. They taught live in a world I can not neurologically understand And I have learned since I have understood my Asperger's Syndrome that when I tend and befriend I find some wonderful NTs out there that really give a good golly about meeting me half way.

Learning how to be NT helped but I don't think that is the issue for you at your lecture - I think maybe you didn't like the lecture because you have heard the story* before and you might have been vaguely disappointed because you wanted to hear something different, something breakthrough. . . that is real faith, you know.

Merle

You said it beautifully, Merle!

I am a little confused... So are you of the mind frame that an AS individual will never want social interaction? Will never want to share their world with others ever? They cannot learn this?

My son until he was 9, it was pulling teeth to get him to offer any information as to his day, he would not let me know of anything happening in his world. I would ask him, "how was your day?" "Good" was the answer, even if I found a note in his backpack or was cornered by the person he spent time with (another parent, scout leader, teacher) and told it was anything but "good". Getting him to give any details was like pulling teeth. We would take a 1/2 hour and get him to discribe just one thing that happened, say "we got cake at lunch because it was someones birthday". Whose birthday? Darned if he knew! This would come after a game of 200 questions. Then, for the next month, he would try to recycle that story as what he did. Everyday we would go through the routine:

How was your day?
Good.
Did you do anything interesting?
NO.
Did you do anything fun?
No.
Did you like anything today?
No.
Really? There was nothing interesting or fun or important that you want to tell me about?
We had cake at lunch, it was someones birthday.
Really? You had cake again?
Yeah.
What kind was it.
I don't know.

The next day, if I followed this up with the teacher, I would find out, there had been no cake in 2 weeks!
Also, it would take 20 minutes to get to the end of this, because he would walk off, or just not respond.

Honestly, I don't know if I would have done things differently with him had I known he had AS. Just reading that shows how ineffective our communication was, how much I "badgered him". But at the time, I had nothing to go on other then severe ADHD.

He could not tell me anything about the passing of his days, explain why he did things, his likes, his dislikes, eventually I got used to it and did not bother him as much about it.

But at 9, a funny thing happened. Stories started to trickle, and then flood in. Often they where 4 or five years old! It was bizarre, I would be in the kitchen making supper, and he would come up to me and talk about how once when he was in Ms. Philips class, a boy came in with a cake for his birthday, and he wished that I brought a cake in for his birthday. (this was 5 years ago). Or how he was sent to the office once for a fight with a child, but he did nothing to start it, no one would believe him. (3 years prior). He seemed to be telling me these stories because he thought I would want to hear them, he seemed to want to share them, only it was years after the fact!

I encouraged him, I told him I wish I knew that years before, I would have been happy for him, or I would have tried to help him, or as a parent, you want to know these things. I stressed with him that I hoped if things where happening now, he would communicate them with me as they happen.

And that is how it began. It took another 3 years to get consistant, but he did begin telling about things as they happened. It is not perfect now, he is not "cured" he is still a horrible self advocate, my 4 year old does a better job, but he is seeking out myself and other people, like his Vice Principle to deal with issues as they occur.

Still, he came home oneday, having one a prize (helmet) at an assembly. He was very excited, he ran up to the stage, threw it on, and wore it for the whole morning! It is a rare thing for him to do, but he actually came home, helmet on his head, bursting through the door shouting "mom, look what I won at school!"

Yes, this is very rare in our house, but did he not want to share this with me? For what reasons? Because he is a trained monkey? Or because he had an interest in connecting with me, sharing his excitement with me, relaying information about his world to mine? From what the presenter said, and what it sounds like some people are saying, because he did this, he cannot possibly have AS?

My point is, he would not have shared something like this at 6. I would have had to ask why he got the helmet, and then he may not have been able to give me an answer. At 12, he genuinely instigates the communication with it, for the purposes of sharing a good time and his excitement with his mother.

So when the presentor said that these children will never share information other then to parrot it, I am confused, because I have seen a growth in this capacity with my son. I am not looking to "cure him". I have learned a lot since comming here, I don't work with him the way I used to, our relationship has improved a lot, I think I understand himself and even myself a lot better. I can see that some people with AS would never cross that bridge between the NT and ASD worlds, except only for their very survival, but is that to say that anyone with AS that does want friends, does want to share information about their life with others, does not actually have AS?

I don't know what you mean by 'mind frame' and I have no idea if all people that experience the world with Asperger's Syndrome are the same. (I don't think they are, but what do I know?)
I am saying I am teachable on HOW to communicate - and I will communicate back to you - but it isn't because I CARE to communicate with you. Being social to be social doesn't interest me, I get no inherent enjoyment for being social. When I understand an NT wants to 'chat' I can do that because it means so much to the NT, and I intellectually know that they are compulsed to make contact and network, and they are just hardwired that way, but that does not mean it means anything to me other than it will make my life easier if I placate the NT and be 'social.'

By the time I was 9, I had learned to try to tell an NT what I thought they wanted to hear. I learned if I said something they liked once, to be sure to say it again, because NTs will nod and smile and then leave me alone. My mom would look at me and say "honor bright?" and me, having absolutely NO idea what that meant would say "honor bright" right back to her. Later she would complain to my father I was a "bald faced liar," which I knew was bad, because it was the naughty corner or no dinner, but didn't know what lying was even though they must have told me again and again, because they TOLD me they had to tell me again and again. ( and what connection did any of this have to "honor bright?"
didn't I perform well enough? at the time she smiled and nodded her head. . . and later she lost her temper and was very irritated with me. and I retained no clue as to how to perform correctly, however I now have 50 years to practice and with maturity I have learned compassion, so I guess I am saying I couldn't be social then, but I can fake being social very well now.

Also, being obstinate was my only refuge, both as a child and as an adult. Just because I experience life with Asperger's Syndrome does not mean I don't have my own likes and dislikes.

But I am trying to let you know that being social is something I can do with out. I PREFER not to be social. I don't feel any warm fuzzies from confiding in someone, I don't feel compelled to eat dinner or go to a movie with anyone. My cell phone does not ring for weeks at a time, and when it does, it's to remind me of a dental appointment or something of that sort. So it is like I am 8 years old with 50 years of practice.

My mother and father passed away long before I was diagnosed with AS, so I don't know what their take on any of this is. They would have probably said they did the best they could, under the circumstances, and I don't think I would have been any different no matter what they did.


Merle

For most of us when we are young its very difficult to articulate our thoughts much less feelings.. theyre very hard for us to understand so its highly unlikely anyone else would understand.. we learn that early from trying and failing and getting frustrated.

As we get older it gets easier.. we struck by moments of insight when we suddenly realize WHY people do or say the things they do.. even if its not the true reason sometimes we realize something that provokes us to act more "normal" as Sins illustrated with his example of socializing.. your reason is you want to "connect" our reason is often it makes life easier to placate the chatterbox.

So its quite possible that he figured out it was easier to say "no" than go through all the effort of trying to explain. As we grow older our "flow chart" I guess you could call it of "rules" that we have created to make us seem more normal and be capable of interacting becomes much more flexible and fleshed out.. early on in its incomplete form you often run into dead ends where you dont know what to say so its easier to say nothing and/or avoid conversations. For example when I would get in trouble and asked why I did something I didnt know how to explain it I didnt have words for the concepts much less the capability to put them together in a meaningful way so "I dont know" became a common phrase.

Either that or he realized that it was important to you even if it didn't seem like it mattered to him and when you get what you want he gets rewarded (not emotionally unfortunately) and it makes his life easier.

Your right we can learn social skills but they take time and a lot of thought to work out and will never feel natural.. like I said its just a system of artificial "If, Then, Else" statements that we tick through and sift.

Ok, thanks for your feedback. I can certainly understand what you are saying, and identify with some of it.

It is sort of strange with myself, I have my immediate family, my husband, my children, and really that is about it. I have not had what I consider a really good friend, although I did have friends when I was in my teens, truthfully though, they where more or less "associations" where I was on the fringes of groups more or less.

I have 3 contacts in facebook. One lady I met on a guinea pig website, found out she lives in my city. Another lady who is the same, only he found out her son also has AS, so that is why I got into closer contact with her, and my sister. I don't think my phone has rung with a "friend" on the other end in 10 years. (I am 30 now).

It is strange, because on one hand, I think I want friends. Sometimes I get depressed that I don't have any. Maybe this means I have more social desires then you. But if I think about it, I have not really done anything to encourage friendships in all this time. I know I have put off people and basically done what my son does, neglect potential relationships to the point that others can't be bothered to try anymore, so I guess my desire for friendships can't be that strong...

Still, my family means everything to me. I can't imagine a life without them, being my husband and children. I may not have AS, I am not officially Diagnosed, and I think I walk that thin line where some would say yes, others no, (I do have 10,000 pinecones in my attic if you want some though! I love pinecones! ) I suppose I guess I just can't imagine a life for my son where he is completely alone, it isn't I want him to be the life of the party or with lots of friends, but at least a couple family members that you are in contact with, if they are positive people to be around has to be a good thing right? Of course, if he did not want that, I would not force him against his will. At the end of the day, I would just have to accept it! But he does seem happier and less stressed out when he is communicating with us and the problems in his life are being dealt with and corrected for him. I just want to be able to help him smooth out some of the bumps along the path and share his triumphs and celebrations, not change who he is...

Those two things are often the hardest for people to understand.

Wanting to be alone but being lonely also.

And that theres nothing you can really do to speed up the process.. he has to come to his own answers and figure people out in his own way at his own pace. To just tell him wont make any sense and for many things even you don't know the answers you take it for granted because its hardwired into your brain (ex. how do you sneeze?).

The how was school today dialogue was how all conversations went and still go with my NT son. He's twenty.

It was difficult to perform for you. I had to think all day at work how to get the right words through for you. I thought about it during lunch break, and I thought about it on my way to work and coming home from work. I am glad you found it OK. Will you be needing any more information from me?



Merle

There is no reliable test for autism. Diagnosis of autism is based on behavior. If ABA treatment may change behavior then there is no reliable criterion at all, right? Therefore they hope that there is some core symptom that may not be changed anyway.
However commercial interests force them to clean up all signs of autism.
But I don't think that dilemma is of a great practical value.

I really identify with that.

I think it is like liking chocolate.

You like Chocolate, and sometimes you want some.
You don't want it all the time, but when you do, it is pretty easy to get, maybe you have some at home, or you go to the store and buy some.

I find my "friendships" are kind of like this too. I don't WANT people around all the time. I want to just go through life, switching having a friend on and off when it suits me. But friends don't generally work this way, they are not chocolate! If you don't continually put out the effort and cultivate the friendship, you don't have any. So the next time you would really like to talk to someone, or spend some time with someone, no one is to be found and then you feel alone.

I can be a very good friend though, I take a lot of responsibility in my friendships, and seem to do better with friends that require a lot of obligation or need a lot of help. Maybe it is because I get a constant reminder to be in contact with them, and it forces me to "cultivate" the relationship? Just going over for coffee and shooting the s**t seems so pointless to me with most people... Until the time that I do want to do that, but have no one to turn too.

My son is very similar to me. He is probably a more social aspie, he WANTS friends, but he seems to neglect them, and has been unable in 8 months at school to make a single friend. He has not made a new friend in at least 3 years now...

To want to be alone, but be loney, seems to be the curse of AS for some of us...

It was difficult to perform for you. I had to think all day at work how to get the right words through for you. I thought about it during lunch break, and I thought about it on my way to work and coming home from work. I am glad you found it OK. Will you be needing any more information from me?



Merle

hello?


Earth Calling,
Perhaps you would like to consider other reasons why your son doesn't want to talk to you.
I have found you hurt other peoples feelings and don't know, or don't care, or just rationalize that feelings shouldn't be hurt and rush off to to other things.

If you treat him like you treated me in this thread, casually using and dismissing, I would certainly never speak to you again, and take pleasure in torturing you about it. Your son is only 8 and he has already figured it out.



Merle