Post by n***@samael.demon.co.uk(My apologies in advance if this comes out with horrible formatting.
I'm answering this through Google Groups and can't save my post as I go
along, so I'm doing this by writing my responses elsewhere and pasting
them in, and I have no idea how that'll look.)
Post by n***@samael.demon.co.ukPost by n***@samael.demon.co.ukMy son has some fundamental problems in the areas of
interpersonal relationships and self-control. This doesn't >>make him
'diseased' or 'defective', but it does make him >>someone who is likely
to find his quality of life impaired
Post by n***@samael.demon.co.ukImpaired in what way?
Less likelihood of having close relationships or a job; less chance
of being able to live independently; more chance of suffering from
anxiety or depression; more stress as he struggles with negotiating his
way through a world that, however much more disability-friendly and
neurodiversity-friendly I hope it will be by the time he grows up, is
still going to be primarily geared for the majority.
Post by n***@samael.demon.co.ukPost by n***@samael.demon.co.ukas he grows older; who has significantly reduced chances of forming close relationships
What makes you think close relationships will matter to him at all?
There's a high chance they will, since they matter to most people.
Autistics are not like most people. I suspect close relationships matter
to no more than half of us. Among those of us who do want close
relationships, many only want them under such tightly constrained
parameters as to make them extremely unlikely, and I suspect that many
who do profess such desire do so because their parents, peers and media
taught them that the desire is necessary for "a normal, happy" life.
Would you want a close relationship with someone who only wants to see
you a couple times a month for no more than a couple hours at a time?
Post by n***@samael.demon.co.ukFor his sake, I'd like him to have the ability to form and maintain
them so that he has that choice available in life if he does want it.
If he does want it, he will be motivated to do what's necessary to make
it happen. If he doesn't want it, why teach him to want it?
Post by n***@samael.demon.co.ukIt's true that some aspies and auties may not be able to handle any sort
of job. Often, among those of us who do want a particular sort of job
the want part is sufficiently strong that we find a way to handle it. In
many cases, it's handling the idea of doing anything else that is the
problem.
If I understand you rightly here, that means that some Aspies *don't*
manage to handle what's involved in getting the job they really want
Sadly, this is true even despite every and all interventions by their
parents. If you hang out here long enough, you will encounter people who
already had the job they are best suited to and lost it because they
could not sustain the social costs long enough at a stretch to stay
employed.
You may find them living on social assistance, whose rules forcibly
prevent them from pursuing the short-term projects they could sustain as
that would prove ability to work and cut them off the assistance they
need for long-term survival.
Some autistics never even make it that far through no fault of their
parents and for no lack of trying. It's just the way it is.
If you really want to help your son, I suggest you put your energy and
resources into political advocacy rather than expensive training.
Post by n***@samael.demon.co.uk, and some of the ones who do have to do so at the cost of having a
fulfilling personal life because they don't have the internal resources
to manage both.
Are you trying to say I don't have a fulfilling life? My answer to that
would be quite profane.
Post by n***@samael.demon.co.ukPost by n***@samael.demon.co.ukand who is, as things stand, becoming an increasing risk >> to the
safety of people and property around him, because >> his impulse
control is so poor that when he's thwarted in >> what he wants he'll
react by lashing out in fury and aiming >> to hurt whomever he perceives
as standing between him and >> what he wants to do.
Post by n***@samael.demon.co.ukWhat is it that he wants to do that is so bad that anyone would want to
stop him in the first place?
Usually it's not that the things are 'so bad', but that he often
wants them to happen on a right-here-and-now basis that doesn't take the
rights or wishes of others into account. So, for example, if he sees his
sister playing with something that looks interesting to him or if she
picks up a book and he decides he wants to read it first, he'll insist
on her giving him that thing immediately (even if it's actually hers)
and he'll hit her if she won't do it. He'll hit her if she won't stop
talking immediately when he wants her to stop (and, yes, we teach her to
respect his right for peace and quiet where possible, but that does need
to be balanced against her right to be able to speak out in the shared
areas of her own home when she wishes to).
Yes, I agree that's a problem.
Post by n***@samael.demon.co.ukHe's punched his TA in the face and broken her glasses because she
took him off the computer at a time when he wasn't supposed to be on it.
He's thrown objects across the classroom in frustration at not being the
child who got picked first for a game (by sheer luck, nobody was hit by
this). He's ripped down a display of work by the other children because
he didn't want a new display in the school hall. He's had lots of other,
similar, outbursts. Lashing out is his typical response to frustration.
Is he mainstreamed? If he is a threat to other students, is he allowed
to remain in class?
Post by n***@samael.demon.co.ukPost by n***@samael.demon.co.ukWhat Floortime aims to do is to fill in those fundamental deficits from the bottom up,
At what cost, though? Have you considered that by focusing on things
your child is simply not wired to learn at this time you may be
depriving your child the opportunity to learn the things he is wired to
learn quite naturally?
I'm not depriving him of the opportunity to learn anything he wants
to learn. The only thing I've considered taking away from him is some of
his computer/DS time. (I haven't actually decided yet whether to do this
- an alternative I've been considering, for purely pragmatic reasons, is
to set up interesting alternative activities for him and give him the
choice of whether or not he wants to come off his computer and do those
things instead. I'd like to try that approach and see whether that works
more happily all round - if not, I would still consider setting limits
on the computer time.)
What has any of the above got to do with Floortime? From what you wrote,
it seems Floortime seeks to divert his pursuit of his own interests into
pursuit of some arbitrary goals.
Post by n***@samael.demon.co.ukAs for the focus of Floortime, it's on whatever the child is showing
interest in doing at that point in time. If the child's interest shifts,
you either shift with it or find a way to bring the just-abandoned game
together with the new one in one combined theme. The key principle is to
be guided by what the child wants to do right then, and figure out a way
to expand that into a game, or add new themes to the game if it's
already a game. We learn from interesting, fun experiences much more
easily than from experiences we're not interested in, so, by working
with what the child wants to do, you can always be working in an area
where the child is wired (at that point in time) to take something in.
You don't seem to be perceiving the message. Autistics learn differently
from non-autistics. Our pursuit of our interests often lead us to
advanced or exceptional development in some areas even while having
delayed development in others. Have you considered that diverting his
attention from his interest to teach him something he is not yet wired
to learn may deprive him the advanced or exceptional development without
much difference in the delayed areas?
Post by n***@samael.demon.co.ukWhat scientific evidence do you or they have that what they do affects
neurology? Or that it affects neurology in any way that is particularly
helpful to your son?
The practical evidence is limited, although the theory is good. If
you're interested, there's a summary of studies done on similar
approaches (most of which aren't Floortime, but follow developmental
rather than behavioural principles) at
<http://www.icdl.com/bookstore/catalog/documents/p8(31).pdf>. (It's a
99-page file, so you might not want to open it if you're on a
low-bandwidth connection.) There's evidence out there, but the studies
aren't really good enough to be definitive.
It kept my attention right up to "Excess areas (behaviors needing to be
decreased, e.g., self-stimulation, aggression, noncompliance,
perseveration)"
Many autistics would disagree that stims and interests need to be
decreased. Many of us would agree that the better approach is to teach
neurotypicals tolerance and acceptance.
I have searched the document for "neurology" and "neurologic" to see
whether it answers my question, and the answer is: "No, Floortime has no
evidence that it affects neurology."
The document has this gem, though, with which I entirely agree:
"Furthermore, when behaviors are dealt with in isolation, the side
effects of the treatment on other skills—including the ability for
abstract thought, creativity, trust and intimacy, relating to others
with warmth and joy, and mood regulation—are not known or even accounted
for, positively or negatively, in the majority of the behavioral
literature. Responsible and ethical treatment approaches must
acknowledge and measure these side effects, particularly when the client
may not be able to provide self-reports of these internal states."
What has been done to measure the side-effects of Floortime? It's my
experience that precious little of the non-behavioral research accounts
for side-effects either. And I would add a lot more to that list than
"trust and intimacy" which strike me as particularly neurotypical values.
I also need to point out that I have little respect for educational
theory. I remember my sister showing me all the theoretical foundation
for "holistic learning" back in the mid-1980's, when she was attending
teacher's college, about how proficient readers read without using
phonetics etc. The theory ignored the patently obvious fact that every
proficient reader they observed first trained their neural network by
sounding out words using phonetics.
So, now we have a generation of illiterate and semi-literate grown up
kids who couldn't spell to save their lives.
Post by n***@samael.demon.co.ukThe best I've been able to find, from the point of view of what might
be relevant to my son and his problems, is an outcome study of 200
autistic children (various degrees, including severe) who underwent the
programme. A few years down the line, 58% of the group had what the
researchers described as 'good to outstanding' outcomes, by which they
meant that the children could carry on long spontaneous two-way
conversations and had good imaginative play skills; had good impulse
control, awareness of their feelings, and a sense of self; no longer
showed perseverative, avoidant, or self-stimulating behaviour; and no
longer scored in the autistic range on the Childhood Autism Rating
Scale. (I should clarify that Floortime is *not* a programme that works
directly on surface behaviours, so this was not a case of autistic
children simply having been trained to look superficially non-autistic.)
9.5% of the children actually scored a year or more ahead of their age
group on socialisation sk
ills.
Since I doubt you have done anything to measure how your son's neurology
differs from the norm, you really have no idea what type of neurology
change would "benefit" him.
What controls were used? How was causality established? What were the
measured side-effects?
Post by n***@samael.demon.co.ukThis study didn't have a control group, it's not clear what the
criteria were for choosing the group studied, and the assessors seem to
have been from the programme rather than independent, and there haven't
been any similar long-term cohort studies to see whether those results
can be replicated, so I wouldn't put too much weight on those precise
figures.
Sorry, I see you already answered my questions. Without controls, the
whole thing is worthless and calls into question the ethical behavior of
the authors and "researchers". None of us knows what they might have
deprived these children of because they chose not to measure that.
Post by n***@samael.demon.co.ukStill, even with all those possible sources of overestimation of
results... you're still looking at results way better than you'd expect
to see from spontaneous maturation of autistic children.
Really? How do you know? How do you know the subjects weren't chosen
such that they would have had "better than you'd expect" outcomes in any
case? And what happened to their "splinter skills"? Perhaps they all had
bad outcomes, but there were no controls so nobody knows.
You seem overly interested in "possible sources of overestimation of
results" without any concern whatsoever for the ethical treatment of
autistic children or any validity whatsoever.
Post by n***@samael.demon.co.ukThat looks to me like reasonably good evidence that this programme
does do something.
With all due respect, your standard for evidence is piss poor if you
consider that "reasonably good evidence" for anything except a basic
lack of science ethics.
interpersonal relationships work.
Post by n***@samael.demon.co.ukIt's quite easy to have an in-depth understanding of how interpersonal
relationships work and still not be able to execute on them or to even
have any interest in them in the first place.
Likewise, one can easily have an in-depth understanding of how internal
combustion engines and drive trains work yet not have the ability or
interest to drive a car.
Yes, I think 'in-depth understanding' probably wasn't quite the
phrase I wanted. What I'm hoping for is not for him to be able to write
an essay on the details of relationships, but to 'get' the give-and-take
of conversation, non-verbal communication, and reciprocity that
neurotypicals take for granted.
Given some of the things you are dealing with, you have no choice but to
teach some basic rules of social interaction; however, some of what you
write seems unrealistic.
Neurotypicals rely on non-verbal signals related to the eyes that most
autistics either find overwhelming or don't perceive at all. The
non-verbal stuff he may never get, which means he may never truly get
when it is his "turn" to speak for example. (This is one of the reasons
so many intelligent autistics and aspies turn to lecturing in
post-secondary institutions.)
Post by n***@samael.demon.co.ukMost neurotypicals I have met are in basic denial about how
interpersonal relationships work in any case because when you get right
down to it the workings are quite ugly and often vicious or cruel.
Then one of my goals for both my children will be to teach them how
to have healthy, functioning relationships.
Do you even know what a healthy, functioning relationship is for an
autistic? Have you ever asked an autistic adult what their concept of a
healthy, functioning relationship would be? Or better yet: many autistic
adults because we are such a diverse lot?
Post by n***@samael.demon.co.ukPost by n***@samael.demon.co.ukIt's done by joining in with the child's chosen activities, >> and
working within those in ways designed to help guide the >> child through
those milestones.
Post by n***@samael.demon.co.ukSo, the child is not allowed to pursue the chosen activities toward
exceptional achievement in those activities, but must instead pursue
some neurotypical idea of the right path to learning along a specific
appears to say that.
Seriously? From 'Based on whatever the child wants to do at that
point in time...' and '...joining in with the child's chosen activities
and working within those...' you get 'the child is not allowed to pursue
the chosen activities'? How?
From "designed to help guide the child through those milestones",
obviously. Didn't "along a specific series of milestones" clue you into
that?
Post by n***@samael.demon.co.ukAnyway, the answer is no. Here's an example of the sort of thing
Jamie's favourite activity in the small amount of spare time that he
doesn't spend on his computer or DS is to act out the kind of 'good guy
defeats bad guy' scenarios that he plays in his computer games. So,
let's say he's started this kind of battle with two of his Lego figures
and is muttering "Pow! Bam!" to himself as he waves them at each other
in an acted-out fight.
Post by n***@samael.demon.co.ukI pick up a spare Lego figure, bring it up to one of the ones he's
holding, and say, speaking for the Lego figure, "Hey! Do you need help
defeating this guy?" and pretend to have my figure jump into the fight.
So, what was a solitary game has become a shared game, and I've deepened
it a bit by introducing the idea of one figure helping another out.
Post by n***@samael.demon.co.ukThen, after a bit of this, I might pick up another Lego figure and
have that one standing on the sidelines of the fight saying "Wow, that
looks scary! I'm scared! Please don't let the bad guy hurt me!" and my
first figure might reassure the second figure "It's OK, I'll protect
you. I'll make sure you're safe." So, now the game's got added themes of
fear, of nurturance, and of how the activities of the central figures
might impinge on the emotions of other people - which are much easier
for him to take in than they would be if I just sat and tried to explain
about those things verbally, because now they're part of an exciting fun
game that he's enjoying, which is a great way to learn new ideas without
it even feeling like 'learning'. And all this is expanding his
imagination in general, which is useful in terms of developing more
flexible thinking skills instead of being stuck in a black-and-white
here-and-now.
I find your vocabulary quite prejudiced. I haven't found any of the
autistic adults I have interacted with here and elsewhere "stuck" or
"unimaginative". There is a lot to be said for living in the here and
now; frankly, it took me a long time to learn how.
Post by n***@samael.demon.co.ukBut, from his point of view, all that's happening is that he's still
playing and enjoying the game he wants to play,
I can cite any number of instances growing up where neurotypical adults
were certain they understood my point of view when they had no clue at
all--when they could not have been any further off-base in fact.
If you read what other autistic adults have written, I believe you will
find they experienced the same.
What convinces you that you really understand his point of view?
Post by n***@samael.demon.co.ukand having all the more fun because now Mummy's taking part too and
thinking of some new ideas for it.
I wouldn't have found that game as much fun with my mother playing. Then
again, I think my mother's approach to dealing with my sensory issues
was to read me "The Princess and the Pea" to teach me how wrong I was.
How old is your son?
Post by n***@samael.demon.co.ukPost by n***@samael.demon.co.ukPost by CanthIt also appears invasive, in that it
takes over the child's whole life
On this point I do share your concern. While every > >
individual Floortime interaction is meant to be structured > > around
the child's interests at that point in time, the >> one thing that
theory doesn't seem to allow for is that a >> person's interests at that
point in time might be to be left alone and have a bit of space for
themselves. Everyone needs to have a bit of time to sit and twiddle
their thumbs without someone else coming along and making it into an
interactive experience in thumb-twiddling, no matter how fun and
enjoyable that experience is aiming to be. So, if I do this, it's going
to be with full regard for my child's signals that he just wants to be
left alone, when such is the case.
Post by n***@samael.demon.co.ukYour message implies that you see no value in what your child does when
pursuing his interests. "Thumb-twiddling" is the paradigm of worthless
activity after all. Many of us would disagree and would see great value
in our peculiar interests.
Sorry, that wasn't meant to be my implication. My point was that
people (well, my son specifically, but people in general) should get to
spend some time doing things that *don't*, in and of themselves, have
any obvious value, because that's how people relax and decompress and
that *is* valuable. (I'm not sure that that made any more sense, but
it's after eleven at night, my brain's fried, and I really want to get
this posted tonight, so my apologies if it's still garbled and I'll have
another shot at explaining it in my next post.)
It's true that autistics tend to need more down time than most people.
My concerns about your description of Floortime is unrelated to down
time. It's also true that autistics tend to pursue special interests
with singular intensity and as younger children tend to play differently
from neurotypicals. My concern with Floortime, based on your short
description, is that it might divert your son from pursuing his interests.
Post by n***@samael.demon.co.ukPost by n***@samael.demon.co.ukOther than that, I haven't been able to find any major concerns
with Floortime. I'm still happy to hear of any that anyone has. But as
far as general concerns go about the dangers of intensive therapy aimed
at 'curing' autistic children or making them act more normal, I'm well
aware of them and have not found them to be a concern in anything I've
read about Floortime.
Post by n***@samael.demon.co.ukWhat do you know about how autistic people learn?
Tends to be in plateaus and leaps, is frequently but not invariably
visual learning, can be in unusual orders, probably some other things
I'm too tired to remember. Not sure what you were getting at here?
In terms of distinguishing between autistics and neurotypicals,
"plateaus and leaps" is the wrong mental model. Autistics learn
continuously just like neurotypicals do. The key distinguishing
characteristic of autistics (and of everyone else on the spectrum) is
pervasive developmental delay. Sometimes, autistics have advanced
achievement in one or more areas simultaneously with delayed development
in others. In pretty much all cases, autistics have more delay in some
areas than in others.
There is some apparent truth to the idea of cognitive stages of
development. School curricula are often based around teaching kids
things when they are ready to learn them. Woe be the neurotypical
children who habitually hit the stages a little later than their peers.
While I was generally mathematically advanced compared to my peers, I
recall the first time improper fractions were presented to me I just
couldn't get them no matter how they were presented. Then a few months
later, they seemed obvious to me without any effort. I experienced
something similar with dual perspective; except I was 9 or 10 when I
learned improper fractions and in my 30's when I first understood dual
perspective. And dual perspective still takes effort.
The "leaps" you refer to are just autistics reaching a particular
cognitive stage. They only seem like leaps compared to neurotypical
children because we don't try to teach neurotypical children things they
are not yet wired to learn; otherwise, they would seem to grow in leaps
and plateaus too.
Autistics who achieve advanced skills do so by pursuing singular interests.
Imagine if every time a neurotypical child played "house" some adult
turned it into a lesson on Stokes Theorem instead. That child might not
learn the things about relating and socializing that the child is
naturally wired to learn. That child might learn vector calculus a
little sooner than she would have otherwise, but I am not sure it would
be all that much sooner (assuming she was ever going to learn it at all.)
My concern with your description of Floortime is it sounds like the
autistic analogue of turning "house" into a lesson on Stokes Theorem.
I certainly have no objection to you trying to teach your child that
might is not always right and that others deserve respect. In fact, I
think that is vitally important, but I don't see what that has to do
with Floortime, per se. I certainly have no objection to using the
natural motivation of your son's interests to foster learning some of
the time. I certainly encourage you to try to participate with your
child on your child's terms. I share Canth's concern that Floortime
seems to want to monopolize that interest and divert it to goals many
autistics would find questionable.
I also have some concern that you seem to expect your son to live to
neurotypical values and to strive for neurotypical goals instead of
accepting him as an autistic person with autistic values and autistic
goals. I could be reading things incorrectly. If you accept him as
autistic, and if you accept that he might have slightly different values
and goals due to his autism, and if you expect him to grow into the best
autistic man he can be, I think you and he will both be much happier and
have a much better relationship in the end than if you expect him to
value everything neurotypicals value and to pursue the same goals
neurotypicals pursue. But, as I said, I could be reading things incorrectly.
Cheers,
Bob