Sunday, November 08, 2009

Does a mother "know" things?


It seems things have changed so much since Ben was small. When he was first diagnosed as PDD at age 3, I read ALL I COULD about autism, and actually had a deal with the library to increase the size of their "autism" books from about 10 to about 30.They were very kind to pay for it all, and never turned down a request. In those days, I read so much about hypersensitivity, and not so much about behavior.In fact, when I suggested ABA because of Catherine Maurice's voluminous book pages regarding teaching language I was told it was "cruel'. My, my, my, how things change. I guess the dying art of behaviorism found a new audience. Even Daddy Skinner, who purportedly said he was going to raise his child on it, couldn't do it.

Here we go. The things that stick in my mind are singular incidents when I caught sight into this "autism".

Things that continue to make me say, "Hhhmmmm....". Am I the only one who sees them? Am I too hovering, or is it my curious nature?

You know, it was a mother who kept bugging the chemist who discovered the problem of her children as an inability to rid the body of phenylalinine, which served as a poison to them as it built up. Phenylketonuria (PKU) was unheard of. Ben's speech teacher in developmental pre-school actually had 2 sisters who died early deaths in institutions (one at age 11) because it hadn't been discovered that decreasing phenyalanine in their diets could have allowed them somewhat normal lives. Every child had not been tested at birth for PKU or other diseases which could have led to special diets and very mild manifestations of the disease. When I studied PKU in my special ed classes in college, I found it simply amazing that this form of severe mental retardation could now be avoided in many cases..

We are fearfully and wonderfully made, and so complex that none can begin to understand the whole of us. Observation by a mother led to a treatment for a debilitating disease. She "smelled " in the urine of her children after they ate what no one else seemed to have noticed . Other children at the institution were also tested. This treatment didn't arrive in time to save her children, but many have been spared a more difficult life and early, early death. Was that mother not accepting her children the way they were? I don't think it had anything to do with acceptance or anything. It was just dumb luck. Hell, if science (observation, not heirachy) would come up with something today to make me more capable, I'd be first in line. Like Elizabeth Moon's book, I'd be there in the speed of dark!!

Kristina wrote an article on Charlie where she brought up "neurological storms". This euphemism for a type of neurological incident has no scientific corollary as defined as it's somewhat similar cousin in the electrical manifestations of epilepsy...ie, we don't know what happens or why...and I've seen it is increasingly used on autism forums. Is it chemical? I often see fear manifested in my son's eyes when he meets with unfamiliar situations...are his feelings of fear hyperacute because of a build-up of a particular protein? Is my own propensity towards depression biologicallly based? There are so many diseases that have already been discovered that are biological buildup of toxic metals---Wilson's disease and copper, Ben's own god-father died of Hemochromatosis (iron overload), undiscovered. When his liver gave out, they said it was because of alcoholism, which he drank to ease the pain.. Both of these diseases are far less dangerous when treated, and WON'T lead to early death, if they are.

Ben's Godmother Mary had a sister, Judy, who I might guess was autistic. Her family always felt that one day a medicine might give Judy the ability to talk, to supply whatever it was her brain wasn't manufacturing. Mary's mom was my mentor, and the reason I went into Special ED. I always saw her as a mother first, not a teacher. She started a school in a local church for kids like Judy long before Public Law 94-142 mandated "free and appropriate education". Most kids were sent to institutions in those days, and families told by doctors to just "forget about them". Of course, they never did.

These things that I saw, when Ben was younger, always made me wonder if some forms of Autism aren't a condition of the brain, like epilepsy, and thus not "mental illness" any more than epilepsy, Parkinson's, or dementia, Alzheimers and adhd are, and thus, wholly untenable to "talk therapy" or "behavioral therapy" or " cognitive therapy" or any other BS put out by APA any more. They can be wholly accepted as a difference beyond the control of the individual, they are NOT diseases of the soul. The way person's suffering from them are treated, can, however, be soul destroying. Medical or Psychological attemptst to "cast out demons" are no more than witchcraft, only to be believed if the shamans practicing them are good enough actors.

I have a few examples that always made me wonder while Ben was growing up. Vignettes that I shall never forget!

When he was about two years old, I remember seeing him shaking his glass of water that had been handed to him. "Isn't that cute? It's like he's swishing the ice in his martinee!" He couldn't hold on to the glass without trembling, I realized later on. It was a hand tremor, like in parkinson's. When he later was shown to have dysgraphia, it kind of chrystallized. He had always had reduced strength in his extremities. His toe-walking was very similar--he couldn't raise his feet--he didn't have the strength or muscle control or whatever it took. Even today, his feet fall as he walks. Why? What else has been affected?

Once, I saw how Ben's brain worked as clear as day. It must have continually been "shorting out"---much like you used to see on the adult ADHD commercial a while back where the womans attention continually changed channels. He had spilt water on his bed, and, like the good boy he had been taught to be, he went into the other toom to get a towel. He came back to his bed empty handed, reached down and felt the wet bed, and headed out again to get a towel. Coming back empty handed, he felt the bed and then set off for the last time, got a towel and set it down on the wet spot in his bed. I tried to explain to his second grade teacher that this must happen to him hundreds of times a day. Almost like a pre-mature senility---I've had that "what am I doing in the kitchen " feeling. I can't imagine dealing with it all the time as a child while your peers coast through. The power it took to focus, had to have been too much to deal with all day long at school. And of course, he was doing it on purpose,,,,,,,,,,,,,,,,Oh, my gosh I look back and think of how tired he must have been, and then he would work on homework for hours at home. This inability to focus was only reiterated recently when Ben told me he would have to work with trains. It would be the only way his interest would be high enough to focus in order to hold a job. Wise, that kid.


What do you know about your own child?  What has given you pause, even when your doctor told you it was nothing? What do you see as the disability, whether or not it is related to what you've been told? 

53 comments:

David N. Andrews M. Ed., C. P. S. E. said...

"I guess the dying art of behaviorism found a new audience. Even Daddy Skinner, who purportedly said he was going to raise his child on it, couldn't do it."

Actually, it was Watson who had that idea. Skinner's daughter had a very nice childhood that was not spoiled in any way (she has actually written about this somewhere); Watson's son killed himself.

Big difference between classical (Pavlovian) conditioning and operant conditioning.

r.b. said...

Skinners denial of free will bothers me. Take that away from a person, and you might as well have a trained animal.

David N. Andrews M. Ed., C. P. S. E. said...

Yes. The notion that there is no free will is bothersome, I'll agree. People do indeed make choices, and they can occur independently of a reinforcement schedule. Having said that, choice-making trends can be set using reinforcement schedules; so I'm not really sure what to make of it, really.

I think - from what I've learned about Skinner's ideas - that Skinner wasn't advocating anything totalitarian (that would be more in line with Watson's ideas, really); I think he'd observed things that suggested to him that - given the reinforcing nature of the environment one lives in - it's possible that we are rather like trained animals anyway, so wouldn't we be better (as Skinner saw it) trying to use that nature of the environment for the public good... that is, controlling the environment in such a way that it makes things better for people's learning and so on.

This is not to say that I would actually advocate an entirely Skinnerian approach to learning, but I would certainly say that because of Skinner's work (rather than Watson's) we have something that could be used to great effect in educational settings. I'd also say that the meticulous assessment protocols developed by behaviourally-oriented psychologists have a lot of scope for application in many settings.

I'll look up an example of what I mean, and report it here.

r.b. said...

I hope that you do. I find it impossible to understand the reasoning for "meticulous assessment protocols"...seriously!Life/learning to me isn't a series of incremental steps, but rather a slow turning "towards the light" of understanding. We ALL desire to be understood. That in itself could be a lifelong goal.

Behaviorists seem to sit in judgement of what that light should be. And they only see the outside. I'm too obsesses with the "inner man", I guess.

Stephanie said...

r.b.,

Re: Post
A lot of the people who've tried to "help" us have tried to convince me there is an intellectual disability along with Alex's communication disability. Alex does not cooperate with tests and does not cooperate consistently to perform his work. Looking at these results, the assumption of intellectual disability is readily made.

Then, there are moments when, for whatever reason, everything inside and outside of Alex is "just right." These elusive moments come and go without warning, without prediction, and often without duplication. But in these moments Alex communicates complex, contextually appropriate sentences. In these moments Alex solves complex problems to meet a previously undisclosed want or need. In these moments Alex's potential is wide open.

I know if we could just figure out what is happening inside and outside in these moments, Alex's intelligence would no longer be dismissed. If we could just duplicate these moments, he could get the education and opportunities he deserves.

I know there is something going on that we don't know about that makes it so much more difficult for Alex to communicate and learn. I just wish I knew what it is, or what combination of things.

Re: Comments
One of the things to consider is we all have different learning/thinking styles. Some people do learn incrementally. Others learn from a more global position. Most are in-between.

I don't think most psychological camps properly account for the interrelation. Chemistry is part of it, training is part of it, perception is part of it, neurological structure is part of it, and human needs are part of it, but they're all interacting at the same time. You can learn how to respond to something in a particular way. That behavioral response is part of what makes us tick. But, people can also choose to change. Determinism only goes so far.

r.b. said...

Miss Stefanie:

look at this:
http://www.shiftjournal.com/2009/09/29/everyone-has-autism/

My mind is so slow, I'm like a dunce when it comes to understanding. But I loved this...

It is partially explained what autism is in a way I've never seen before.

But I KNOW what you mean about understanding Alex's keen mind. Schools are notorious for not teaching our kids who don't often give a lot out. So I guess it's left to us mom's and those who believe.

Thanks.

David N. Andrews M. Ed., C. P. S. E. said...

"I hope that you do. I find it impossible to understand the reasoning for 'meticulous assessment protocols'...seriously!"

Sometimes, they are necessary if you want to find the environmental matters that could be some of the causes or maintaining factors of particular behavioural issues. The more information one has, the better quality the assessment; even Binet was of the opinion that whatever tasks one gives in an assessment, there should be plenty of them.

"Life/learning to me isn't a series of incremental steps, but rather a slow turning 'towards the light' of understanding. We ALL desire to be understood. That in itself could be a lifelong goal."

Actually, things tend to be quite incremental... things we learn are discrete packets of information that affect our schemata incrementally. We can visualise in terms of turning slowly towards the light of understanding if we like, but that is just a visual metaphor.

"Behaviorists seem to sit in judgement of what that light should be."

I agree that some do, and this is not a good thing. Behaviour is behaviour, and is neither good nor bad. Really, behaviours should be seen as serving some function or other, and that function is what assessment of behaviour is about. Value judgments about behaviour are, regardless of who makes them, inappropriate.

"And they only see the outside."

Strict behaviourists do; Skinner was a radical behaviourist - he was concerned about understanding what he called 'private events' as much as what he called 'public events' (thoughts/feelings and actions to you and me).

"I'm too obsesses with the 'inner man', I guess."

As strict behaviourists are with 'outer man', maybe? I dunno...

But - there is a place for meticulousness in assessment; if someone were to assess me, and they did very few things, I'd feel that the assessment was not comprehensive enough and therefore had sacrificed inferential validity for economic expediency. Which is actually what happened to me as a child.

r.b. said...

Sir:

The only frame of reference I have is the 7 months I tried to be a behaviorist in a residential school for kids with "mental disabilities", including autism. I could never do it right, I'm too emotional, and prone to take things personally. But to my credit...I believed in those kids, and never gave up trying to understand.

It's not that the kids were treated as animals...it's that they were treated as children. Preschool children. Or even toddlers. Even though testing showed it was their behavior, not their intellect, that was somewhat stilted.

It is one thing to see something academically, and another to see how it is done out in the field. To my notion, the outside behavior was the end of the line. Other considerations, such as intellect and any form of spirituality were not even considered. As though only one part of the person was treated.

Who knows, my way probably would have failed miserably, and I finally did get where I became a "behaviorist"...and I quit. The workers pretty much thought I was a fool, anyhow.

It's not that they were "wrong", they were extraordinarily kind and patient, much more so than I. And I really do believe the workers loved the kids, or most of the workers, as there are always bad apples.

It just seemed that none of the kids were taken seriously. "Eternal Children", which was fine in some cases, and probably apt. But NO trouble was taken to figure out if that might be wrong.

In theory, behaviorism might be okay. But in practice...I think it also served as a parameter for workers to know how far they could go without getting in trouble...

David N. Andrews M. Ed., C. P. S. E. said...

"The only frame of reference I have is the 7 months I tried to be a behaviorist in a residential school for kids with 'mental disabilities', including autism. I could never do it right, I'm too emotional, and prone to take things personally."

It's understandable to - based on one's feelings - end up taking something personally that wasn't meant so: we all seek to make meaning of what happens around us and to us, and feelings are factors in that process. Not the best ones available to us, though, because any given action that someone engages in can bring out in us two very different responses based entirely on our feelings. Which is a very good reason, if I'm honest, to (whilst not leaving them out altogether) try to minimise their effects on our thinking and what we do.

"...it's that they were treated as children. Preschool children. Or even toddlers. Even though testing showed it was their behavior, not their intellect, that was somewhat stilted."

That is not a good thing. And that distinction should have been made at the time (and, if you had thought so at the time, that would have been useful as a guiding principle on how to proceed). Definitely a good observation on your part.*

"It is one thing to see something academically, and another to see how it is done out in the field."

True...

"To my notion, the outside behavior was the end of the line."

Not sure how you mean that... I'll wait for you to expand on it, so I can give a useful reply...

"Other considerations, such as intellect and any form of spirituality were not even considered. As though only one part of the person was treated."

That's where I would be at odds with the strict behaviourist: even Skinner had no actual problem with these things... his version of behaviourism does in fact allow for them to be taken into account... just not accorded any special status, as in trait theories (for example).

"It just seemed that none of the kids were taken seriously. 'Eternal Children', which was fine in some cases, and probably apt. But NO trouble was taken to figure out if that might be wrong."

You see, you just hit the nail square on its head! The assumption of 'eternal children' is not one that should be held in any sort of behavioural assessment of anyone at all: it is a poor assumption to make - and it should always be tested, in any case, because science isn't just about testing nice hypotheses... it's also about checking one's assumptions and seeing how much water they hold - if any! That they never really took time to find out how true that assumption was is pretty damning really: says how much they understood the 'behavioural science' aspect of what they were doing. Seems that you got a good handle on it, actually!

"In theory, behaviorism might be okay. But in practice...I think it also served as a parameter for workers to know how far they could go without getting in trouble..."

That is always an issue; but that is a practitioner issue, not a practice one, if that makes any sense I mean that it's something about the attitudes of the person practising a disciplne, rather than the discipline itself.

I'm not a behaviourist, per se, myself; but I do see a value for what it leaves is in its legacy. I also - having taken the time to find out more about Skinner - have realised that he was actually more ethical and humanistic than most people give him credit for having been.

May have been that your ideas would have gone better than the status quo practices you were seeing at that place. Obviously you think more about the assumptions you need to make regarding what you do.

* I'm assuming that this observation came later or that there were reasons why - if you had thought that way aobut it at the time - you couldn't say much about it.

Stephanie said...

r.b.,

Thanks for sharing that link! It does put autism in a different context.

r.b. said...

I'm sorry you were judged unfairly. Bless the kids that were and go into teaching. My son's best teacher was. It was a very peaceful year for us! He also had a psychiatrist who was encouraging, not "seeking out the reasons", because he was ADHD himself.

I still find something missing in ABA. Now that it is the "be all and end all" in public schools, I think it's sad that the essence of the kids will be missed.

What is essential, is invisible to the eye

David N. Andrews M. Ed., C. P. S. E. said...

"He also had a psychiatrist who was encouraging, not 'seeking out the reasons', because he was ADHD himself."

Dman, yous were lucky! My psychiatrist when I was a kid tried to psychoanalyse my mum through me! Bleedin' idiot him!

"I still find something missing in ABA. Now that it is the 'be all and end all' in public schools, I think it's sad that the essence of the kids will be missed."

This I have no disagreement with at all. The problem I have with it is the same one that Richard Feynman had with this sort of thing... it has the outward appearance of science, but it has none of the internal attitudes that make the person a scientist: inquiring mind, a patient soul, and an eye for detail.

For me, a behavioural assessment - done correctly - is the starting point for asking questions (and this is a good starting point, because you get to see what the person actually does that people are having difficulties with!). And a proper behavioural anaylsis can also help to find out whose problem something actually is.

"What is essential, is invisible to the eye"

You're not wrong there. And Skinner was actually of the same mind. Here's an example. He disliked the teaching of reading. He said that we should teach the love of reading! He saw the importance of private events, you see. These ABA people who ignore the private events (as opposed to those who actually do take them into account in their observations and formulations) are not even close to what Skinner had in mind. They haven't really gotten past Watson.

r.b. said...

I do like the FBA's. It aint always the kid...

Personally, I hold my equitable relationship with my son as the gold standard. If something goes wrong, which it seldom does these days, I repair the relationship, not his behavior. But he's my son.

There has to be a better way than ABA. Too many have suffered because of it.

David N. Andrews M. Ed., C. P. S. E. said...

"I do like the FBA's. It aint always the kid..."

Exactly, and an FBA - done properly - will bring out evidence of that fact. I've done this a few times. One of these FBAs was actually part of my child psychology case studies paper for my M. Ed. at Birmingham.

"Personally, I hold my equitable relationship with my son as the gold standard."

Equitable. I like that. Points to a balanced system of justice within a relationship. And equity theory is the main theory that I use when trying to explain discord in any sort of relationship.

"If something goes wrong, which it seldom does these days, I repair the relationship, not his behavior."

Exactly. Usually, getting relationships sorted will lead to a somewhat automatic 'correcting' of behaviour.

"But he's my son."

Indeed.

"There has to be a better way than ABA."

I'd say there has to be a better wayof doing ABA; by that I mean that, when it's done by people who are basically Cargo Cult people, it is not being done properly. Because they go through the motions of science but don't do science. I think that behaviour analytic methods have a place in working with people, but they are a means to an end, not an end in themselves. And there's the thing: the cargo cult science approach to ABA is what it is because the method is seen as an end in itself, rather than as a means by which to get a result. A bit like doing an experiment, and following a perfect experimental protocol, but having no clue whatsoever what the hypothesis is that one wants to test.

"Too many have suffered because of it."

That I agree with. For the reason I gave earlier.

Behavioural methods by themselves are, of course, limited in their scope and application; but as part of an overall toolkit for providing support in educational and developmental issues, they have a good degree of utility.

But they are not the be-all-and-end-all.

Stephanie said...

Chiming in here:

"I'd say there has to be a better way of doing ABA..."

For me it really depends on what part of ABA you're doing and how exclusively you're doing it. Ben is receiving behavioral therapy, and ABA is a part of it. But, even if we want him to sit down and do the ABA tasks for two hours straight, the problem is he's not up to that most days. He needs to move and he needs sensory in-put and yes, he even needs to stim. And that's okay.

The way his program works is to do some ABA-style work, some OT-style work, some play, some reading, and some eating (which is also work).

In the stricter ABA programs I've seen, the biggest most important thing the people seem to be forgetting is that the individual they are working with is a child. Work is part of it, sure; but children need fun. It's a need, not just a luxury. Being autistic doesn't change that.
(Of course, this being the "biggest" is only because I have not witnessed any programs that use aversives.)

David N. Andrews M. Ed., C. P. S. E. said...

"For me it really depends on what part of ABA you're doing and how exclusively you're doing it. Ben is receiving behavioral therapy, and ABA is a part of it."

It does indeed depend on what is being done.

"But, even if we want him to sit down and do the ABA tasks for two hours straight, the problem is he's not up to that most days. He needs to move and he needs sensory in-put and yes, he even needs to stim. And that's okay."

I'd say so too. The behaviours he engages in probably are function to him, even if many can't see functions for them: it's not the therapist's job to judge.

"The way his program works is to do some ABA-style work, some OT-style work, some play, some reading, and some eating (which is also work)."

Sounds a good mix, actually.

"In the stricter ABA programs I've seen, the biggest most important thing the people seem to be forgetting is that the individual they are working with is a child."

This is a key issue... this is where it is - as Skinner observed - important to understand the private events (thoughts and feelings)... children's private events of course will differ from those of adults.

"Work is part of it, sure; but children need fun. It's a need, not just a luxury. Being autistic doesn't change that."

Couldn't agree more.


"(Of course, this being the "biggest" is only because I have not witnessed any programs that use aversives.)"

Indeed.

r.b. said...

Personally, I came up with my own system of rewards/punishment for Ben, that took into account his highly developed sense of fairness and love of money. We did a "cost/benefit" analysis---if you do this, then it is going to cost you this much. If you do this, this will be your reward. No ifs, ands or butts. Straight forward. Nice doing business with you kid...BUT it worked!! When you get all that mushy love "I'll forgive you, but don't let it happen again" type stuff, it just gets confusing to a kid who needs it straight. I kinda did the same thing at the PMD classroom, rather than ABA. The "adversives" were just too much for me. I don't need control that bad. I guess it made me a piss poor behaviorist, though.

Oh...and if the business end got too mean, one could have a "forgiveness" card to get out of jail free, 'cause we all screw up.

r.b. said...

I just contradicted myself... what I mean is, a behavior was sometimes unconditionally forgiven and forgotten. I didn't try to understand the reason why it happened. Kind of like a boss giving a bonus because the liked the overall work of his "protege".

r.b. said...

Mr. Andrews:

Does that remind you of any particular theory, cause it worked like magic for me! I finally found I could correct Ben's behavior without judging (the parameters were set) or criticising (I can't help it, it just the way it is. ) I quit seeing the behavior and just saw Ben. I don't feel the animosity toward the behavior (you're doing this on purpose!) because it seems to have disappeared, or I have become more forgiving, and more relationship oriented.

This study, that Autism Diva (may the saint be praised, ppt-pppt!!) came up with a few years ago "felt" GOOD to me!

http://autismdiva.blogspot.com/2005/04/better-much-better-way-of-teaching.html

Stephanie said...

r.b.,

"We did a "cost/benefit" analysis---if you do this, then it is going to cost you this much. If you do this, this will be your reward."

We did something like that with Willy (though he needs the forgiveness, too). But, the key for that is having some thing that the child is interested enough in. Willy is sufficiently materialistic that it works. Alex and (my) Ben don't have a program, because they don't have things that are that important to them. We will interfere with negative behaviors directly and provide positive reinforcement, but none of the aversives/consequences we've tried has been both understood and effective.

David N. Andrews M. Ed., C. P. S. E. said...

@r. b.,

"Personally, I came up with my own system of rewards/punishment for Ben, that took into account his highly developed sense of fairness and love of money."

This is gonna be interesting ....

"We did a 'cost/benefit' analysis---if you do this, then it is going to cost you this much."

... like I said, very interesting!

"If you do this, this will be your reward. No ifs, ands or butts. Straight forward. Nice doing business with you kid...BUT it worked!!"

Very interesting indeed...

"When you get all that mushy love 'I'll forgive you, but don't let it happen again' type stuff, it just gets confusing to a kid who needs it straight."

You hit the nail on the head there... Asperger would call it 'teaching with the emotions turned off', and you also found a reinforcement system that worked because it was based on something that Ben had some value for.

"I kinda did the same thing at the PMD classroom, rather than ABA. The 'adversives' were just too much for me."

Actually... to be honest, no proper self-respecting ABA consultant would be that into using aversives, because they are not really that effective, except as terrorism. Seems that you were able to identify a meaningful reward/cost/benefit analytic way of working with Ben, and that appeals to both operant conditioning theory and equity theory (one as a learning theory and the other as a social/relationship investment theory)... and that is the proper application of behaviour analytic thinking, so that was actually more the right way of doing ABA than anything that yon Norwegian Nazi could ever think of (bear in mind that he was a psychoanalyst who skimmed over behavioural psychology, and was not really in much contact with Skinner... Lovaas was looked after by Ferster, because Skinner couldn't be arsed with either of them by then).

"I don't need control that bad."

Nobody should.

"I guess it made me a piss poor behaviorist, though."

On the contrary - atleast one behaviour consultant I've been in touch with (he's on the Hub) would dare to agree with me that your brand of behaviourism was pretty much close to Skinner's own ideas (basically, naturalistic settings and meaningful reinforcement schedules).

David N. Andrews M. Ed., C. P. S. E. said...

"Oh...and if the business end got too mean, one could have a 'forgiveness' card to get out of jail free, 'cause we all screw up."

Sounds a good idea... that's a kind of 'time out from reinforcement' strategy that basically lets out the steam from the pressure cooker.

"I just contradicted myself... what I mean is, a behavior was sometimes unconditionally forgiven and forgotten."

Didn't seem like a contradiction to me....

"I didn't try to understand the reason why it happened. Kind of like a boss giving a bonus because the liked the overall work of his 'protege'."

Yes. Showing the value of valuing the overall standard of behaviour or level of learning (etc), and actually showing a context for the occasional non-so-desirable behaviour. That is a good way to reduce the risk of any sort of neurosis about anything.

"Does that remind you of any particular theory, cause it worked like magic for me!"

Basically a slightly humanised and naturalistic operant conditioning set up. And a good one. You got results and you didn't hurt Ben.

"I finally found I could correct Ben's behavior without judging (the parameters were set) or criticising (I can't help it, it just the way it is.)"

Exactly. And it's clear enough for him. And also for you. Which is why it doesn't get difficult... nothing to crowd the issue.

"I quit seeing the behavior and just saw Ben."

Interesting...

"I don't feel the animosity toward the behavior ('you're doing this on purpose!') because it seems to have disappeared, or I have become more forgiving, and more relationship oriented."

Good outcome...

"This study, that Autism Diva (may the saint be praised, ppt-pppt!!) came up with a few years ago 'felt' GOOD to me!"

I always felt that - although she was at the time going to become a very good psychologist - there were a few things that AD didn't actually get about the things we're taught in undergraduate psychology studies; but - as above - pleased enough with the overall quality of her posts that it wasn't worth getting into any heated debate with her on it... She used to make me laugh. A lot.

Would be nice to know what AD is doing now, actually... last I knew, the BA had been got and research loomed big on the horizon.

r.b. said...

Mr. Andrews:

What is the singular most helpful advice you can give to mothers of adult autistics?

David N. Andrews M. Ed., C. P. S. E. said...

"What is the singular most helpful advice you can give to mothers of adult autistics?"

I'm not sure that there is such a thing really, because:

a- helpful advice is really specific to particular situations;
b- the way i work in any case is to provide a setting (by giving information relevant to the making of decisions) in which a parent can figure things out for themselves (because that most effective advice is that which people figure out for themselves... their attachment to it is stronger, and they are more likely to follow through on it).

However - one of the things uppermost in my mind as something to say to either parent of a grown-up autistic child is this: whatever you do, do not write your child off.

I've come across a lot of that "writing off" of autistic adults by many parties, including parents. When I was young, it was said to my mother that I would never amount to much; and I had to carry that on my shoulders from being an autistic child to becoming an autistic adult, and it has basically worn me down. It's actually more demoralising having to live down to people's expectations than it is to need to be advocated for (at least, that's my experience, and I'm guessing that a great many of my autistic peers would feel the same).

Being written off is about expectations held other people, rather than the expectations that the autistic person has about him/herself and his/her life. And expectations - whilst they should not be inappropriately high - should also not be inappropriately low, either.

So - if ever I were to be asked for one piece of advice that should be the single most helpful one I could give - it would be that one: whatever you do, don't write your child off.

David N. Andrews M. Ed., C. P. S. E. said...

*scared that I've killed the thread.... *

r.b. said...

Oh, no, I've been really buzy all day. Ben goes to the Nat'l Archives in Atlanta for Homeschool History...his dad works there and runs it. I need to give my family some guff on facebook, finish dinner, watch the news and I'll be back! I am so thankful you are being so honest with me. I like straight talkers...I am one.

r.b. said...

That's very good advice. I was of a mixed mind when Ben was young. There was no AutismDiva in those days...so...much...darkness! All I knew was "Rainman", and a few statistics from education classes.

I hope I don't make you feel uncomfortable in relating your story.

I've had a long day, and I seem to have hit a block. Too many brain cells killed off in my youth.

Stephanie said...

"So - if ever I were to be asked for one piece of advice that should be the single most helpful one I could give - it would be that one: whatever you do, don't write your child off."

I would say that's good advice, regardless of the child or the child's need.

David N. Andrews M. Ed., C. P. S. E. said...

@r.b.: "I am so thankful you are being so honest with me. I like straight talkers...I am one."

Know what you mean. Best to be straight about things. And yes, my opinions are posted honestly here. Same stuff I was putting into a meeting this morning actually, in a case of an autistic child... mine. Weird thing being in a meeting and having two roles... educational psychologist and dad!

And I also know the busy-thing ... life is hectic, no?

"That's very good advice."

Thanks... glad you think so. I'd say it's also the most important piece of advice I could hand on to anyone.

"I was of a mixed mind when Ben was young."

I can kinda understand... because of all the lack of good quality information about...

"There was no AutismDiva in those days...so...much...darkness! All I knew was 'Rainman', and a few statistics from education classes."

Indeed... when I was younger there was even less than that; so my parents didn't get a lot of support at all: the child psychiatrist went out of his way to make it all about my mum!

"I hope I don't make you feel uncomfortable in relating your story."

No, don't worry. It's a story that gets told a lot.

"I've had a long day, and I seem to have hit a block. Too many brain cells killed off in my youth."

Another feeling I know well... and the same shrink may have managed to kill of some of mine when it dosed me up on anti-psychotics.


@Stephanie: "I would say that's good advice, regardless of the child or the child's need."

Thanks... and yes, regardless of what the levels and types of needs that the child has.

r.b. said...

Miss Stephanie: what are your children's ages?

Mr. Andrews: What is your opinion on drugs? (I italicize because I know it is a loaded question.)

Susan Senator said...

Separating the child from the autism -- that has been one of the biggest questions for me. I guess most of the time he's just "Nat."

In terms of what I "know" about him: just about everything, always, from Day One, has been only things I've felt inside, with no real evidence at all.

David N. Andrews M. Ed., C. P. S. E. said...

@r.b.: "Mr. Andrews: What is your opinion on drugs? (I italicize because I know it is a loaded question.)"

Well... the meds thing is a very thorny issue, as I'm sure you can realise. My opinion here is as follows:

1- if there is nothing for which a medication may be legitimately prescribed, then the medication should not be prescribed;

2- even if there is something for which a medication could be legitimately prescribed, it may still be inadvisable to prescribe medication since a better way of working may be available.

I'm not against medication per se, but I do take serious exception to the use of psychotropic medications being used without much thought.

r.b. said...

Miss Susan: That's really perceptive. I worked in a classroom of kids who had no language. They each had such intense personalities...I felt like I left there knowing more about humanity than any school could ever teach. And at times I felt they communicated in ways you just couldn't put your finger on. You became so sensitive to nuances!


Mr. Andrews:

I know what you mean...I put Ben on ritalin because I didn't want him to end up in a special ed classroom where far less learning goes on. The guilt was intense, because it was my choice.

I hope your daughters meeting went okay. How old is she? (It gives me an idea of where you are in the school struggle, if we have similar stories.) Are her problems similar to those you had? We see a lot of ourselves in Ben.

David N. Andrews M. Ed., C. P. S. E. said...

"I know what you mean...I put Ben on ritalin because I didn't want him to end up in a special ed classroom where far less learning goes on."

Doesn't sound like a really ... free choice... meds v. less actual teaching/learning ... My wee one tells me that her class isn't so good... she doesn't have a great impression of the place.

"The guilt was intense, because it was my choice."

Can believe that... but remember, the choice wasn't the best one available, was it?

"I hope your daughters meeting went okay. How old is she? (It gives me an idea of where you are in the school struggle, if we have similar stories.)"

The clinic's own nurse was a very nasty, sly bitch; the psychiatrist was more open then the one who was scheduled to be there. There were two social workers from child welfare whom the clinic invited and who were clearly pissed off about being used in an attempt to force my and my daughter's mum to let them send her to have a hospital-based assessment. They're not used to people standing up to them at this clinic. And since me and wee one's mum are the only two people with proper autism-specialist training in Finland, we don't miss a trick they try to use. Meantime, the psychiatrist is asking me about what things I know of that could be used to support wee one's learning and social development, and so I was telling this stuff, and using the texts I had with me to demonstrate that it was actually researched stuff. And the social workers nodded approvingly of what I said. And even the shrink was impressed. The nurse was singularly pissed off.

They have read, at this clinic, that sometimes people with Asperger-autism diagnoses can sometimes go psychotic; and they've read it as will go psychotic. I have never liked child psychiatrists. The one today wasn't so bad but the one tomorrow is apparently a proper cow.

"Are her problems similar to those you had? We see a lot of ourselves in Ben."

Very much so. And I know what happened when the psychosis+meds thing was used: basically everything came to a stop.

Many professionals behave in very unprofessional ways. But this shrink today knows that I currently work in a psychiatric unit (I'm an educational psychologist, which allows me more freedom in many ways), and she asked me straight out if I thought that wee one is psychotic. I said, "No." Not aggressively, and not disgustedly. Just matter-of-factly. I've seen friends and other people who were psychotic, and wee one is nothing of the sort.

r.b. said...

We attempted to get Ben in to a school started by a mother who was a big name in special education in her school district. Then, she had a child who became a part of that system. She looked back on all the parents she had dismissed. It's different being on the other side, and nothing but walking the same road gives you a clue.

Oh, my God, your story reminds me of the sole IEP I attended to serve as support for a parent, a friend. The Psych says, "I think your son is possibly schizophrenic. We've heard him talk in at least 3 different voices". I was so perturbed!!!! Good God, what would she have thought of my son, who mimicked voices almost exactly, not even knowing what the words meant. When he was very small, about 2 years old, there were 2 instances when I knew someone who had been caring for him had expressed something because he was using adult words. He used to sit at night and repeat strings of communication, where I figured he was trying to determine what was said to him long after it had been said. "REPITION" not schizophrenia, ya stupid ass!! That's how this stuff get's started!!! Some goofball with the brains of a flea delves deep into the psyche of others (or so they believe) and comes up with a crock of poo lable that determines the future of a vulnerable child. I better go get my blood pressure medication...I'm about to go apoplectic just thinking about it...Uhm, I mean, I can understand how you must have felt.

The more we understand about autism, the less fear tactics will work.

r.b. said...

Repitition...brain fart, sorry. I'm getting worse in my old age.

Stephanie said...

"Miss Stephanie: what are your children's ages?"

Willy is 10 and Alex is 9, though both will be turning a year older next month. My Ben is 7.

So, young enough to benefit as children from the knowledge gains in the last few years, but at the same time they're old enough that when Willy was first diagnosed we were advised to institutionalize him--which they're not allowed to do now.

And I know you didn't ask for mine, but my opinion on medication is as follows:
1) There should always be a choice.
2) Medicating children should be done for the child's need not adult's convenience.

I agree with David in not being against medication. But, unless medication is for specific, medical reasons (i.e. antibiotics and the like), it shouldn't be used as a first-resort. My husband struggles with bipolar disorder and he chooses to be medicated. I struggle with depression and try to maintain control without medication. My nephew takes ADHD medication, but it wasn't a first solution, just the best for him. It really depends on the individual, and I personally recommend treating with extreme caution any medical advice that doesn't take the individual into consideration (usually indicated by words like, "Well, this is what we do...").

Stephanie said...

"That's how this stuff get's started!!! Some goofball with the brains of a flea delves deep into the psyche of others (or so they believe) and comes up with a crock of poo lable that determines the future of a vulnerable child."

It's scary how common that is. We've faced it, too. Not at school, but from professionals and "professionals" that have tried to exert way too much control over my kids future. From the one who said Ben couldn't possibly be autistic, because three out of three kids with autism was too much of a statistical anomoly; to the one who set CPS on when we didn't conform to her demands (like teaching Willy that he was too old to hug as a greeting--at 7); to CPS itself, which was a nightmare.

This is definitely a line of thinking that leads to anger! That area in my brain with less self control is already grumbling and growling away--I guess that means I've got multiple personalities, too.

David N. Andrews M. Ed., C. P. S. E. said...

"We attempted to get Ben in to a school started by a mother who was a big name in special education in her school district. Then, she had a child who became a part of that system. She looked back on all the parents she had dismissed. It's different being on the other side, and nothing but walking the same road gives you a clue."

Yep. Wonder what she thought of her own behaviour after all that.

"Oh, my God, your story reminds me of the sole IEP I attended to serve as support for a parent, a friend."

Do tell...

"The Psych says, 'I think your son is possibly schizophrenic. We've heard him talk in at least 3 different voices'."

How old was the lad?

"I was so perturbed!!!!"

No shit! I'd be ('scuse the terrible gaelic) f*cking furious!!

"Good God, what would she have thought of my son, who mimicked voices almost exactly, not even knowing what the words meant."

Indeed... By that psych's reckoning, Steve Coogan would have been dosed up on heavy meds before he'd reached puberty!

"When he was very small, about 2 years old, there were 2 instances when I knew someone who had been caring for him had expressed something because he was using adult words."

Interesting use of discourse analysis! You have a Bachelor of Science degree in Special Education and the shrink has a Bachelor degree and then does a Doctoral degree in Medicine and then post-doctoral work in Psychiatry, right? (I'm on about the US side of things here). And yet you analyse the discourse to look for clues, and recognise from the content that it's because of people the lad's been in contact with. Brilliant! Seriously. How come the non-docs are doing it better than the post-docs?

"He used to sit at night and repeat strings of communication, where I figured he was trying to determine what was said to him long after it had been said."

That's how I learned how to say things. It's a valuable means of learning how to use any spoken language.

"'REPETITION' not schizophrenia, ya stupid ass!!"

Yep.

"That's how this stuff get's started!!!"

Yep.

"Some goofball with the brains of a flea delves deep into the psyche of others (or so they believe) and comes up with a crock of poo lable that determines the future of a vulnerable child."

Exactly. And they can't say it doesn't have huge effects: it does! Had huge effects on my life!

"I better go get my blood pressure medication...I'm about to go apoplectic just thinking about it...Uhm, I mean, I can understand how you must have felt."

I know. MY blood pressure's constantly high!

"The more we understand about autism, the less fear tactics will work."

One of my main aims as an advocating educational psychologist: disarm the machine by telling the facts about autism and how the machine works.

David N. Andrews M. Ed., C. P. S. E. said...

@Stephanie:
"I know you didn't ask for mine, but my opinion on medication is as follows:
1) There should always be a choice.
2) Medicating children should be done for the child's need not adult's convenience."

Absolutely! All too often there is no choice and all to often, the medications are given for the needs of people other than the child.

"I agree with David in not being against medication. But, unless medication is for specific, medical reasons (i.e. antibiotics and the like), it shouldn't be used as a first-resort."

That's exactly what I mean.

"My husband struggles with bipolar disorder and he chooses to be medicated. I struggle with depression and try to maintain control without medication. My nephew takes ADHD medication, but it wasn't a first solution, just the best for him."

This is what I mean, when it's at the practical end of the matter... and this is how it should be.

"It really depends on the individual, and I personally recommend treating with extreme caution any medical advice that doesn't take the individual into consideration (usually indicated by words like, 'Well, this is what we do...')."

Absolutely! And that last bit... that is a gold standard warning! We're getting this with my wee one just now at the psychiatric clinic... the whole 'This is what we do' thing. I even had occasion to take issue with the nurses leading the meeting about something that is part of my specialty: assessment, diagnosis and intervention. They were wanting to know ways to help my wee one in her home and school life. And not once did anybody come in with the idea of finding out what brings about the need for my daughter to do what she does (whatever it is she does). And I had to tell them all, in Finnish (English is my native language) that it is:

a- pointless to even think about doing anything when we do not know what it is we're going to be doing it for (like, Dah!); and,

b- autism is a developmental issue and it should be dealt with educationally, not medically (i. e., not as a collection of behaviours to be controlled by meds; the Finnish are very big on the use of medications).

The hospital neuropsychologist was asked by this one nurse (a veritable arse of a nurse!) who has the expertise in Kotka (where we live) to come up with ideas and intervention strategies... notwithstanding that my daughter's mum has two master's degrees (one in biology and one in applied psychology) - all of which is known to these nurses (as is the bunch of qualifications that I hold too). The neuropsych looked at the nurse and then at me and my daughter's mum and pointed at us and said: 'Well, they do, don't they?!'

Talk about pissing in somebody's chips! I felt a really good feeling of satisfaction that this evil nurse had just had her supper spoilt by someone she thought she'd have as an ally!

David N. Andrews M. Ed., C. P. S. E. said...

@Stephanie (again):
"... from professionals and 'professionals' that have tried to exert way too much control over my kids future."

I'm enough in the system to be seen as 'a psychologist who works in the field of mental health', and enough out of it to be seen as 'someone who could bring us problems' by the other people in the system fully. I hate to see colleagues castigated for the sins of the few, but... well... sometimes, it's not just about not doing the thing that's professionally wrong... it's also about choosing to not let others do that thing too. Am I right?

"From the one who said Ben couldn't possibly be autistic, because three out of three kids with autism was too much of a statistical anomoly;"

Statistical anomaly, my arse! That's no anomaly... that's an example of how the odds of getting a child who will eventually develop as an autistic child work on a 'with-replacement' basis! Reproductive and developmental biologies do not look at families and say 'okay, this family's got one autistic child already, so let's make the next two typical!' ... as that professional should be well aware! Every child conceived leads to a resetting of the odds; it is not the sock-drawer puzzle.

"to the one who set CPS on when we didn't conform to her demands (like teaching Willy that he was too old to hug as a greeting--at 7);"

This is like the peripatetic special needs nursery teacher who was saying that there was a serious threat to my daughter's development on the basis of the fact that she was - at 4yrs of age - still in nappies. This person was obsessed by this nappies thing, despite the fact that my daughter had taught herself how to use a computer, and then taught herself how to use the internet, and then used the internet to find sites that would teach her English, and then she used that English language to find sites that would teach her Spanish and Chinese! And this person is saying 'We should be seeing some signs of development!'

And - with the full backing of training as an educational psychologist - I proceeded to bollock this teacher (in front of the whole party!). She was very careful to not piss me or my then-wife off again.

"to CPS itself, which was a nightmare."

Usually are. In the case here, they're on our side and thoroughly pissed off at the child psychiatry lot for trying to use them as a sideways means to get my daughter into a six-week 'parentectomy-style' hospital-based assessment (which is the 'what we do here' thing that goes on as a standard practice in Finland).

r.b. said...

"One of my main aims as an advocating educational psychologist: disarm the machine by telling the facts about autism and how the machine works."

I'm guessing you mean the mental health machine in Finland. It is probably similar to America's, in my mind. Yet, six weeks is an awfully long time for a child to be away from family.

I live for the day autism is dealt with educationally, not medically. Gosh, think if they'd have dealt only with Helen Kellers behavior and drugged her into submission. The world would never have known her great mind! It isn't a sin to need others to make it in this world...she needed Annie.

ACH, I dream too much!

DJ Kirkby said...

What a great post. I knew N3S was 'not like other infants' from the time he was 3 days old. It was a few months after that before i realised he was similar to me and a few years before the 'experts' could see it too. I think parents see things that others don't. Speaking of different ways of looking at things, I've got a great book giveaway on my blog this Sunday which I think you'll find interesting.

David N. Andrews M. Ed., C. P. S. E. said...

@r.b.:
"I'm guessing you mean the mental health machine in Finland. It is probably similar to America's, in my mind."

It, and more, really... the education and social care systems too. Finland is trying to model a lot of things after the American models of doing things, but even the US cannot support the more commercial models of provision these days with about 300 million people in it: Finland has less than 6 million people... we can't make our own economy work properly because all the skilled folk bugger off to... the UK and the US ... and Canada ... and Australia ... and New Zealand. And other places.

"Yet, six weeks is an awfully long time for a child to be away from family."

For a not-quite-eleven-year-old, who has yet to develop a proper sense of time, it's like an eternity! There's this obsession with scientific accuracy here in Finland, but there's no proper skill in making a decision based on the evidence one gets. So, they take the kid into a situation that is entirely new to him/her and they observe and make copious notes. And then fail to realise that the new setting is going to affect behaviour in some potentially very serious ways. They haven't yet understood that behaviour is not purely a biologically-determined phenomenon: it is very much a situation-specific matter, especially when one is trying to determine what function any given set of behaviours might be serving someone.

"I live for the day autism is dealt with educationally, not medically."

So do I. But, whilst ever the entrenched belief in the medical practitioner as "the supreme wisdom on Earth" prevails, we'll never see it. And the medical profession will never give up that stance. Case in point, where "poikkeus vahvistaa säännön" (the exception proves the rule):

My sister was asking about my nephew for years, wondering if he might be autistic. I did some tests and interviews, and got a developmental history. During the process, I'd just started my post-graduate training at Birmingham, and was over in the UK for the residential bit. Went to my aunt's house in Leicester and had dinner with her and my sister and my niece. Sis asked aunt about whether she could determine whether my nephew is autistic or not, and my aunt (who is a medical practitioner herself) said, "Ah, well... that's really David's area...not mine!"

"Gosh, think if they'd have dealt only with Helen Kellers behavior and drugged her into submission. The world would never have known her great mind!"

Exactly.

"It isn't a sin to need others to make it in this world...she needed Annie."

Indeed it isn't. It's part of what it's like to be human!

"ACH, I dream too much!"

Dreaming would be a great way to get things to move forward if it weren't for the inflexible and antiquated systems we have to deal with all the time.

Anonymous said...

It is very interesting for me to read this post. Thanx for it. I like such topics and everything that is connected to this matter. I would like to read more on that blog soon.

r.b. said...

Cat in a Dog's World had an interesting item,

http://autisticcats.blogspot.com/2009/11/sunday-times-to-defective-people-dont.html

Ed often talks about judgements made on "worthiness" by those who see in themselves a need to be superior. I remember sitting in third grade wondering what in God's name would help me avoid becoming a Nazi. I can think of nothing more conducive to Nazism than a superiority complex.

May you meet no Nazi's in your endeavors with your little one. I'll pray history doesn't repeat itself. (Forgive me if this is too close.)

David N. Andrews M. Ed., C. P. S. E. said...

I commented on Sarah's post on her blog. And it certainly smacks of what comes next here:

"Ed often talks about judgements made on 'worthiness' by those who see in themselves a need to be superior."

Yes, he does; and he often manages to piss me off by castigating psychology instead of "some unscrupulous psychologists" (and other applications of this distinction). This is not to say that - if these distinctions were properly applied in his posts - I'd disagree with him. I do find myself agreeing a fair bit with him. And the whole issue he notes of some people having a need to feel superior: it's bloody real ... it has a name!

The action is called a downward social comparison, and it is born of a perceived threat to one's sense of identity. It is an action that happens both at the individual level and the group level, and can have disastrous consequences when it reaches the societal level (i. e., when it becomes part of a wide social group's culture). Two prominent examples of this from the past three hundred or so years: slavery and the Nazi persecution of the Jews.

"I remember sitting in third grade wondering what in God's name would help me avoid becoming a Nazi."

As did I at some point in my schooling.

"I can think of nothing more conducive to Nazism than a superiority complex."

Sadly, that is the sort of 'complex' that is quite prevalent amongst many (the wearing of Nazi symbols is still not illegal in Finland, even though it is in Germany). I wonder if anyone's noticed how there's always a socio-political drift towards right-wing thinking: an example- the current UK Labour government is more right-wing than the previous Tory one was. The SDP-led government in Finland claims to be leading a social democracy: nothing of the sort- it's the last soviet state on the planet, and it's only that because it was never formally seen as one, so it has never been dealt with as an political ideology (but this is the ideology that drives Finnish politics and especially the way the social systems work... and I use the term 'work' very loosely indeed!).

"May you meet no Nazi's in your endeavors with your little one."

We've met some people who come blindingly close to that description, sadly.

"I'll pray history doesn't repeat itself."

I thank you.

"(Forgive me if this is too close.)"

It isn't. Nothing to forgive.

Stephanie said...

David,

"The hospital neuropsychologist was asked by this one nurse (a veritable arse of a nurse!)..."

Is it usual for a Finnish nurse to have (or think she has) as much pull or power regarding treatment and care? That seems unusual to me.

"I felt a really good feeling of satisfaction that this evil nurse had just had her supper spoilt by someone she thought she'd have as an ally!"

I'm glad you had allies there. Personally, I'm sick of people who do not know autism telling the parents (and children) who are living it what the reality of autism is. To be the most qualified party there on top of that: 'frustrating' doesn't cover the half of it but I try to avoid swearing.

"I hate to see colleagues castigated for the sins of the few,"

I try very hard not to assume all psychologists are a certain way. I feel completely comfortable, however, saying most of the psychologists I've experienced were mediocre and ineffectual; some were down-right bad and harmful; and a few were actually beneficial.

"but... well... sometimes, it's not just about not doing the thing that's professionally wrong... it's also about choosing to not let others do that thing too. Am I right?"

Absolutely! Sometimes it seems like psychologists are not accountable to anything or anyone. If the is the case, they should at least be accountable to each other.

"Statistical anomaly, my arse!"

Yeah, that wasn't pretty much my response. There are at least three other families in this county alone. There's a Yahoo Group for families with three or more. It's not like we're alone in this.

"Reproductive and developmental biologies do not look at families and say 'okay, this family's got one autistic child already, so let's make the next two typical!' ... as that professional should be well aware!"

LOL. Exactly!

"This is like the peripatetic special needs nursery teacher who was saying that there was a serious threat to my daughter's development on the basis of the fact that she was - at 4yrs of age - still in nappies."

I have two kids still in diapers, and they're both older than 4. It's inconvenient, and teachers dislike it, but it should never be the basis for ignoring other facets of development. I'm not studied in these matters, aside from independent effort, but the reading I've done indicates these systems are much more complex than they seem. Lack of regulation in one system does not mean lack of regulation in other systems or lack of cognitive ability.

"She was very careful to not piss me or my then-wife off again."

Good for you! I call that my mama bear approach. Generally, I'm reasonable and polite. Piss me off and the claws come out with teeth bared.

"In the case here, they're on our side and thoroughly pissed off at the child psychiatry lot ..."

I'm glad to hear they behave better for some.

Stephanie said...

r.b.,

"It isn't a sin to need others to make it in this world...she needed Annie."

That's the truth, but we push independence so much (at least in the U.S.) that this truth gets lost somehow. The thing that gets me about this phenomenon is that independence is an illusion. We all need others to make it in this world. It's just that some needs are more pronounced than others.

"ACH, I dream too much!"

That's a dream we share! And if that's dreaming too much, I'd rather dream too much than too little.

Stephanie said...

David,

" ...the mental health machine in Finland.
It, and more, really... the education and social care systems too."

They really do go hand-in-hand, especially as autism and many other differences/disabilities are regarded as medical issues. The way things are done in one field interrelates with the way things are done in others. They all generally start from similar assumptions, though there are obviously those who rise above those assumptions in all the fields.

"we can't make our own economy work properly because all the skilled folk bugger off to... "

That's a totally different issue, but is Finland perchance better at training people to be skilled than employing them in their skills? Or, is it a pay issue (the jobs are there, but they can't compete on pay)?

"And then fail to realise that the new setting is going to affect behaviour in some potentially very serious ways. They haven't yet understood that behaviour is not purely a biologically-determined phenomenon: it is very much a situation-specific matter, especially when one is trying to determine what function any given set of behaviours might be serving someone."

Isn't that a given? Isn't that readily observed in--well, everything? I learned in junior high that both the observer and the environment effect the observation. Isn't that a common principle in science?

"But, whilst ever the entrenched belief in the medical practitioner as "the supreme wisdom on Earth" prevails, we'll never see it. And the medical profession will never give up that stance."

All they need is to keep giving out these bogus prognoses and having others prove them wrong, in my opinion. I lost faith in the medical profession when we were told Willy would never talk, never practice pretend play, never go to school with his peers -- all of which he now does. The one of my kids that we were told should be institutionalized is the one that is having the most success by typical standards.

r.b. said...

My computer is going wonky...so is everyone else's I know on AT&T. They are blaming it on a defective "modem", but three people at the same time????

Marla said...

It is interesting the signs when we look back. Things I thought were adorable now look like big red flags.

r.b. said...

Marla, I know what you mean.

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