For parents wondering what to do...
Bob Badour
what to do. I am convinced the 2 most important things are:
1. Relax
2. Love and accept your child
And now, here is the scientific proof:
http://preview.tinyurl.com/ylxxw4z
Aquarian Monkey
Good news for me, right? LOL
I"ll start by admitting that I didn't make it past the methods part.
I don't seem to have the attention span I once had for reading
research, plus, reading on the computer screen is hard for me and my
son spilled perfume and the whole house stinks, so it makes it even
harder for me to focus.
Here are some thoughts....
I don't see how this research is directly helpful for a parent of a
newly diagnosed kid. These kids are adolescents or adults. Different
breeds of people, IMO. The other thoughts I had were these: first of
all, how can you tell which way it goes...are the mothers warmer
because their kids have less behavior problems, or do the kids have
less behavior problems because the moms are warmer? When I look at my
own postings about my kids, when things are going well, I, indeed,
show all kinds of warmth and positivity. But if I am posting because
one of them just had a 2 hour tantrum or I got called into the school
because of problems, I'm not quite so warm and positive. Also, if I
read correctly, it is the mother filling out the instrument that
measures behavior, right? I think it is reasonable to assume that
mothers who are generally more warm and positive will also rate their
kids behavior in more positive terms, whether or not it is, in truth,
better behavior than someone else's kid.
Again, I didn't make it to the end, but I don't see any "proof" that
relaxing and accepting your kid for who he/she is is the answer to
parents of newly diagnosed kids.
I'm not knocking the general idea. I think the general idea is one
I've tried to live by. But it isn't always quite that easy for parents
of newly diagnosed kids, and I can certainly understand that my rather
"laid back" attitude may very well be *because* my kids are high
functioning (and not the other way around).
I do think that the most important thing that parents of newly
diagnosed kids can do is to research, research, research, and
research. Learn everything you can about everything. Read about the
pros. Read about the cons. Find the reasons *to* do any particular
approach. Then find the reasons *NOT* to do it. Use your brain. Don't
accept anyone's opinion as 100% valid for your kid unless they happen
to know your kid as well as you do. Be skeptical, but willing to think
differently. You will never need critical thinking skills as much as
you will when you are the parent of a newly diagnosed kid. Understand
that what works for one, may not work for your kid/family. And what
failed for one, might work for your family.
Trust your instinct.
Believe in your kid. Honor your kid. But most importantly, resepct
your kid. Do everything you can do to know your child for who he/she
is *right now* at this very moment in time. Listen to people on the
spectrum. They may or may not have the exact experiences as your kid,
but unless you are on the spectrum yourself, they are probably closer
to sharing your child's reality than you are. Understand that and
accept it. It doesn't mean you're a bad parent. It just is what it is.
Love your kid. Understand that he/she will likely never be "normal,"
learn to be ok with that, then figure out how to teach your kid to be
ok with that. Be their advocate. Every day. Every where.
Find support. You'll need it. Don't feel guilty for feeling resentful,
angry or overburdened. Just feel it and move on. You've got bigger
things to do than be held down by your own self pity party.
Allow yourself to see the humor in all of it. Sometimes your kids will
do/say things that are a direct result of their wiring and it will
really be funny. Don't be afraid to laugh. Laugh with them and teach
them to laugh along with you. No one is perfect and sometimes a good
laugh makes everyone feel better.
Find the thing(s) that they do better than everyone else. Don't call
them "splinter skills" or other such nonsense. Call them gifts. That's
what they are. Focus on those gifts and make sure your kid knows that
they are gifted.
When someone responds to the news that your child is autistic by
saying "I'm so sorry," say "I'm not" and really mean it. Our kids are
more perceptive than I think most people understand. How you veiw them
(and their autism) will largely impact how they view themselves.
And lastly, don't focus on finding the way to "cure" your child of
some horrible disease. What a horribly draining way to go through life
and what a burden to place on your child. Find the way to help your
kid live his or her life to it's fullest. Afterall, that's what you'd
do if he or she was typical, and he or she doesn't deserve any less
because he or she is differently wired.
Bob Badour
> On Nov 19, 10:05 pm, Bob Badour <bbad...@pei.sympatico.ca> wrote:
>
>>Sometimes a parent of a newly diagnosed autistic will show up wondering
>>what to do. I am convinced the 2 most important things are:
>>
>>1. Relax
>>2. Love and accept your child
>>
>>And now, here is the scientific proof:http://preview.tinyurl.com/ylxxw4z
>
> Good news for me, right? LOL
>
> I"ll start by admitting that I didn't make it past the methods part.
> I don't seem to have the attention span I once had for reading
> research, plus, reading on the computer screen is hard for me and my
> son spilled perfume and the whole house stinks, so it makes it even
> harder for me to focus.
>
> Here are some thoughts....
>
> I don't see how this research is directly helpful for a parent of a
> newly diagnosed kid. These kids are adolescents or adults. Different
> breeds of people, IMO. The other thoughts I had were these: first of
> all, how can you tell which way it goes...are the mothers warmer
> because their kids have less behavior problems, or do the kids have
> less behavior problems because the moms are warmer?
It's too bad you didn't read the method part because it addresses that.
It tends to go both ways.
> Again, I didn't make it to the end, but I don't see any "proof" that
> relaxing and accepting your kid for who he/she is is the answer to
> parents of newly diagnosed kids.
When you get a chance, try to make it to the end.
> I'm not knocking the general idea. I think the general idea is one
> I've tried to live by. But it isn't always quite that easy for parents
> of newly diagnosed kids, and I can certainly understand that my rather
> "laid back" attitude may very well be *because* my kids are high
> functioning (and not the other way around).
The whole high functioning/low functioning thing isn't all that useful a
concept. One of the most laid back parents I have ever met has a child
many would consider "low functioning" and many others might call "high
functioning". She also has an aspie child and another probably on the
spectrum.
Another parent of a non-verbal child I know speaks very warmly about his
child. I am not sure how laid back he is, but definitely warm and caring.
<snip>
> Believe in your kid. Honor your kid. But most importantly, resepct
> your kid. Do everything you can do to know your child for who he/she
> is *right now* at this very moment in time. Listen to people on the
> spectrum. They may or may not have the exact experiences as your kid,
> but unless you are on the spectrum yourself, they are probably closer
> to sharing your child's reality than you are. Understand that and
> accept it. It doesn't mean you're a bad parent. It just is what it is.
>
> Love your kid. Understand that he/she will likely never be "normal,"
> learn to be ok with that, then figure out how to teach your kid to be
> ok with that. Be their advocate. Every day. Every where.
>
> Find support. You'll need it. Don't feel guilty for feeling resentful,
> angry or overburdened. Just feel it and move on. You've got bigger
> things to do than be held down by your own self pity party.
>
> Allow yourself to see the humor in all of it. Sometimes your kids will
> do/say things that are a direct result of their wiring and it will
> really be funny. Don't be afraid to laugh. Laugh with them and teach
> them to laugh along with you. No one is perfect and sometimes a good
> laugh makes everyone feel better.
>
> Find the thing(s) that they do better than everyone else. Don't call
> them "splinter skills" or other such nonsense. Call them gifts. That's
> what they are. Focus on those gifts and make sure your kid knows that
> they are gifted.
I would add just a little to that: Gifts and passions not splinter
skills and obsessions.
> When someone responds to the news that your child is autistic by
> saying "I'm so sorry," say "I'm not" and really mean it. Our kids are
> more perceptive than I think most people understand. How you veiw them
> (and their autism) will largely impact how they view themselves.
>
> And lastly, don't focus on finding the way to "cure" your child of
> some horrible disease. What a horribly draining way to go through life
> and what a burden to place on your child. Find the way to help your
> kid live his or her life to it's fullest. Afterall, that's what you'd
> do if he or she was typical, and he or she doesn't deserve any less
> because he or she is differently wired.
Hear! Hear!
--
is there something in it for them, like maybe bailouts, if they can
panic us into doing something politically to cover them?
November 19, 2007 - John S Bolton
Aquarian Monkey
<SNIP>
> The whole high functioning/low functioning thing isn't all that useful a
> concept.
Perhaps not in the big picture. I mean, my son is so "high
functioning" that some would question whether or not he is actually on
the spectrum, yet at the age of 8, he has a hard time dressing
independently.
On the other hand, for parents of newly diagnosed kids, I think it
makes all the difference in the world. My daughter may have been
delayed in speech, but she eventually "got it" and she was never so
disconnected that she didn't acknowledge my existence. Most people who
stare at my kids in public do so because they are cute and
entertaining, even when their "autism is showing." For some parents
of low functioning kids, the stares are not for those reasons. I
believe these things make a difference in how "easy" it is to come to
acceptance. I believe both of my kids will one day live independently,
have jobs, have relationships, be successful, etc. I think that makes
is much easier for me to simply accept them as autistic. It really
isn't that big of a deal to be completely honest. But for parents of
lower functioning kids, I think coming to terms with things is
probably much more difficult and probably takes a lot more time. I'm
not saying that they *can't* come to terms with it--I know many who
have--but I think their road from "initial realization that something
was different" to "I completely accept this as it is" was probably
much different (and more difficult) than mine.
>One of the most laid back parents I have ever met has a child
> many would consider "low functioning" and many others might call "high
> functioning". She also has an aspie child and another probably on the
> spectrum.
>
> Another parent of a non-verbal child I know speaks very warmly about his
> child. I am not sure how laid back he is, but definitely warm and caring.
Single occurrences do not necessarily equate general trends. You will
always be able to find people who, due to their own temperament, deal
with just about anything life can dish out. Psychological hardiness.
Fabulous trait to have. From my own experiences in talking with
hundreds of parents of kids on the spectrum, I think those of us with
"higher functioning" kids, in general, have an easier time finding our
own acceptance. Now, that is not always the case. I have also met
parents who have very high functioning kids who are still hell bent on
"curing" them of their "affliction." But again, I think that has more
to do with the general temperament of the parent than it does with the
existence of autism in the child. If the kid was NT, the parent would
probably find some other way to try to force perfection on to the kid,
ykwim?
I do think that one of the reasons my daughter progressed so rapidly
early on was because she didn't have the pressure of parents looming
over her, expecting her to become NT. At each stage of her
development, I have always said "If it never gets any better than
this, I will be completely happy" and I truly mean it. I am thankful
for where she is. Every day she surpasses what I thought she could
achieve and I am grateful for that. I do believe that if I would have
"tried harder," for lack of a better word, to have an NT kid, she'd
probably not be as far as she is now. I believe the stress would have
thwarted her development. So I do agree with the sentiments. But I
still don't think that research focused on adolescents and adults can
necessarily be generalized to toddlers, which is when most kids are
"newly diagnosed."
Bob Badour
> On Nov 28, 8:23 pm, Bob Badour <bbad...@pei.sympatico.ca> wrote:
>
>>The whole high functioning/low functioning thing isn't all that useful a
>>concept.
>
> Perhaps not in the big picture. I mean, my son is so "high
> functioning" that some would question whether or not he is actually on
> the spectrum, yet at the age of 8, he has a hard time dressing
> independently.
>
> On the other hand, for parents of newly diagnosed kids, I think it
> makes all the difference in the world.
The child of the other parent I mentioned would have been called "low
functioning" when a young child. Due at least partly to his parents'
relaxed and accepting attitude and assertively advocating for what was
needed instead of what was fashionable, many would consider him "high
functioning" today.
I don't see how it can make any real difference for the parents of newly
diagnosed kids. Speech delays etc. in childhood do not always equate to
low functioning in adults, and parents have a lot less control over that
than they would like to think. The best thing parents can do is not
freak out, but accept their child.
>>One of the most laid back parents I have ever met has a child
>>many would consider "low functioning" and many others might call "high
>>functioning". She also has an aspie child and another probably on the
>>spectrum.
>>
>>Another parent of a non-verbal child I know speaks very warmly about his
>>child. I am not sure how laid back he is, but definitely warm and caring.
>
> Single occurrences do not necessarily equate general trends.
The study I reverenced was not a single occurence, and the other parents
you know are.
> But again, I think that has more
> to do with the general temperament of the parent than it does with the
> existence of autism in the child.
Exactly. And the study I cited directly measures the effect of
temperament to a level of statistical significance. Brains are plastic.
Temperaments are malleable. Parents can learn to relax and accept.
In terms of support for parents of newly diagnosed children, what do you
think is a better investment? Funding for the parent to inflict ABA or
chelation on their child? Or funding for counselling for parents to help
them to relax, to accept and to evaluate programs and claims from the
ethical viewpoint of their child?
> At each stage of her
> development, I have always said "If it never gets any better than
> this, I will be completely happy" and I truly mean it. I am thankful
> for where she is. Every day she surpasses what I thought she could
> achieve and I am grateful for that.
Exactly.
If you relax and accept your child, you will speak warmly about your
child and who your child is.
If you see your child as a list of deficits that burden you, you will
speak critically about your child.
If you see your child as a goal to achieve or a battle to win, you will
overinvolve yourself emotionally in your child.
The study I cited shows of the three cohorts, the "speaks warmly" cohort
has better outcomes, and the study establishes a causal link. I suggest
you wait until you have the time and the resources to properly evaluate
the study and its method. Then, if you want to argue against it, you can
do so from a position of knowledge instead of a position of ignorance.
> I do believe that if I would have
> "tried harder," for lack of a better word, to have an NT kid, she'd
> probably not be as far as she is now.
If by "tried harder" you mean "critical" or "emotionally overinvolved",
this study shows your children would not have as good outcomes as they do.
Aquarian Monkey
>
> The study I cited shows of the three cohorts, the "speaks warmly" cohort
> has better outcomes, and the study establishes a causal link.
*Causal*? Are you certain that its causal and not just correlational?
>I suggest
> you wait until you have the time and the resources to properly evaluate
> the study and its method. Then, if you want to argue against it, you can
> do so from a position of knowledge instead of a position of ignorance.
Bob, I am so totally *NOT* refuting the findings of the study. I am
not arguing against the study in the least bit. The study itself makes
wonderful sense to me.Although I don't find it surprizing to find that
kids who have parents who regard them in a warm, positive manner have
less behavior problems. No duh.
What I am saying is that a study that shows there is a relationship
between positive regard on the parent's part and behavior on the
child's part in adolescents and adults may *or may not* generalize to
the newly diagnosed, who happen to be toddlers. For one thing, we have
no way of knowing what interventions the parents did or did not
undertake when the child was first diagnosed, nor do we know how they
behaved toward their children when they were toddlers. It is possible
that some of these parents regard their children so positively because
they tried everything else under the sun and when they tried
everything they could find, their only option was to accept. We don't
know about that. It also appeared to me that the measurement of the
child's behavior was a report from the same parent who was asked to
speak about their child. I believe a parent who speaks warmly of their
child will probably tend to see the child's behavior in a more
positive light. I, for example, feel that my kids are well behaved.
But I can promise you there are people out there who think my children
are undisciplined and poorly behaved. So while *I* might rate them as
having little to no behavioral problems, someone else might rate them
as being little hellions. I don't have a problem with them running
around the house yelling all day. Nor do I have a problem with them
getting up in the middle of a meal and leaving the table. To me, those
are not "behavior problems." To someone else, they might be. Plus, I
think it is just a little psychologically incongruous to think that
someone would sit and speak favorably about their kid for 5 minutes,
and then turn around and acknowledge that they are a behavioral
management problem.
And for what it's worth, and I know this isn't necessarily a popular
point of view here but I trust that those who know me understand that
I am not an ignorant fool and will therefore honor my experience as
valid, my daughter was very lucky there were funds available for me to
"inflict" ABA on her. Her ABA/VB therapy was among the best things we
ever did for her. All of her early intervention helped. Interventions
to help your kids function are not inherently evil. Misused
therapy...yes. Properly implemented therapy...no way! She can't learn
incidentally like other kids do. ABA/VB structured things for her in a
way that not only allowed her to learn, it allowed her to catch up to
her peers in most areas and even surpass them in a few. But the line
between properly implemented programs and ineffective and even
damaging ones is probably quite fine. That's why I said the first
thing a parent needs to do when faced with a new diagnosis is to
research and learn everything they possibly can, including the pros/
cons, fors/againsts for each and every alternative out there because
it is only through understanding both sides of every issue that
parents will be able to sort through all the emotionally charged
arguments on both sides to find a way to create the program that will
help their kid. If I would have listened to some people who I respect
a great deal, my daughter would have never had ABA therapy. I can
promise you she wouldn't be where she is now. I do believe she'd still
be on a path of progress, but it would have been a much slower one.
So, yes, I agree that it would be great to also have funding available
to help counsel parents to make better informed decisions for their
kids, but seriously, that's needed for parents of *all* kids, not just
autistic ones. Interventions also need to be funded so that all kids
have access to things that may very well help them lead a more
fulfilling life. Sometimes a parent's love alone, no matter how strong
it may be, will not be enough to accomplish that.
Bob Badour
> On Nov 29, 10:46 am, Bob Badour <bbad...@pei.sympatico.ca> wrote:
>
>>The study I cited shows of the three cohorts, the "speaks warmly" cohort
>>has better outcomes, and the study establishes a causal link.
>
> *Causal*? Are you certain that its causal and not just correlational?
Yes. Before you try to attack the study, you need to understand the
method used.
>>I suggest
>>you wait until you have the time and the resources to properly evaluate
>>the study and its method. Then, if you want to argue against it, you can
>>do so from a position of knowledge instead of a position of ignorance.
>
> Bob, I am so totally *NOT* refuting the findings of the study. I am
> not arguing against the study in the least bit. The study itself makes
> wonderful sense to me.Although I don't find it surprizing to find that
> kids who have parents who regard them in a warm, positive manner have
> less behavior problems. No duh.
>
<arbitrary snip for brevity>
>
> And for what it's worth, and I know this isn't necessarily a popular
> point of view here but I trust that those who know me understand that
> I am not an ignorant fool and will therefore honor my experience as
> valid, my daughter was very lucky there were funds available for me to
> "inflict" ABA on her. Her ABA/VB therapy was among the best things we
> ever did for her. All of her early intervention helped. Interventions
> to help your kids function are not inherently evil. Misused
> therapy...yes. Properly implemented therapy...no way! She can't learn
> incidentally like other kids do. ABA/VB structured things for her in a
> way that not only allowed her to learn, it allowed her to catch up to
> her peers in most areas and even surpass them in a few.
How do you know it was causal and not correlational? What controls did
you use?
Can you cite a single study that supports the hypothesis that the style
of ABA your child received improves outcomes? If so, what measures of
outcome?
> So, yes, I agree that it would be great to also have funding available
> to help counsel parents to make better informed decisions for their
> kids, but seriously, that's needed for parents of *all* kids, not just
> autistic ones. Interventions also need to be funded so that all kids
> have access to things that may very well help them lead a more
> fulfilling life.
The question is what those things might be. I strongly doubt ABA is one
of them. Evidence suggests ABA holds autistic children back overall for
the sake of developing skills more evenly like normal children do.
> Sometimes a parent's love alone, no matter how strong
> it may be, will not be enough to accomplish that.
There you go making a leap of illogic a la "Autism Speaks". Nobody
suggested parents should love their autistic children but leave them
unattended in a dark corner somewhere.
Aquarian Monkey
<SNIP>
> There you go making a leap of illogic a la "Autism Speaks". Nobody
> suggested parents should love their autistic children but leave them
> unattended in a dark corner somewhere.
Nor did I suggest it. And now I think you are just being deliberately
inflammatory because I think you know me well enough to know that was
not what I was saying.
But back to the research, perhaps there is a way to prove causation
without manipulating any variables in a single study using this type
of research. It is wholly possible that I am not aware of it. I would
find it surprizing were it true, but I guess it's possible.
I won't argue with you about whether or not ABA works. No matter what
I say, you will refute it. I understand your concerns with the method.
Heck, I even agree with them. But there are ways to work around those
concerns and create a program that is respectful of, and benefits, the
child. I've seen that with my own two eyes. You are free to think what
you want. I respect you no less for it and accept it as something we
disagree on, that's all. But it won't prevent me from sharing my views
or experience. Perhaps others can benefit from it. After all, one of
my main points is that parents need to take in as many different views
as they can find before trying to make their own decisions. Both of
our views are valid as a part of that end.
Bob Badour
> On Nov 29, 2:55 pm, Bob Badour <bbad...@pei.sympatico.ca> wrote:
> <SNIP>
>
>>There you go making a leap of illogic a la "Autism Speaks". Nobody
>>suggested parents should love their autistic children but leave them
>>unattended in a dark corner somewhere.
>
>
> Nor did I suggest it. And now I think you are just being deliberately
> inflammatory because I think you know me well enough to know that was
> not what I was saying.
>
> But back to the research, perhaps there is a way to prove causation
> without manipulating any variables in a single study using this type
> of research. It is wholly possible that I am not aware of it. I would
> find it surprizing were it true, but I guess it's possible.
>
> I won't argue with you about whether or not ABA works. No matter what
> I say, you will refute it. I understand your concerns with the method.
> Heck, I even agree with them. But there are ways to work around those
> concerns and create a program that is respectful of, and benefits, the
> child.
Really? If that were so, it should be easy to construct studies that
prove it. Where are they? It's not like we have any shortage of subjects.
There is no question ABA is popular with parents. I think parents in
that situation have a natural desire to "do something". The propaganda
scares them and makes them want to "do something" even more. ABA is
popular with parents because it comes in measurable quantities of "do
something" whereas things like unstructured play and trying to reach the
child on the child's terms do not.
When outcomes improve, parents get to pat themselves on the back and
claim credit for the improvement because they "did something". But
autistics learn and grow anyway often in very non-linear fashion, and
just as some autistic traits become more noticeable right around the
time toddlers get some of their vaccinations, some autistics have a
developmental spurt within a year or so of starting any program just
because they have developmental spurts.
The parents of those kids will swear up and down that whatever program
the child was in at the time caused the rapid improvement but frankly
autism caused the rapid improvement because that's the way autistics grow.
And the parents of the kids who don't improve just get motivated to "do
more".
I have a friend who isn't even autistic but probably on the broader
spectrum. He didn't speak until he was 4, and when he started to speak,
he caught up to his peers in a matter of weeks. He is a brilliant man.
I think his parents just thought he was a normal kid who would speak
when he wanted to. In the current social climate, I am sure he would
have been assessed for all sorts of things, and his parents would have
been pressured to enroll him in some program or another. And at 4, he
would have a remarkable "recovery" soon to be paraded as "cured".
> I've seen that with my own two eyes.
You've seen what? You've seen an autistic have a developmental spurt?
Autistics do. Have you seen a good study that proves the effectiveness
of the style of ABA your child attends?
> You are free to think what
> you want. I respect you no less for it and accept it as something we
> disagree on, that's all. But it won't prevent me from sharing my views
> or experience. Perhaps others can benefit from it. After all, one of
> my main points is that parents need to take in as many different views
> as they can find before trying to make their own decisions. Both of
> our views are valid as a part of that end.
Good science is valid. ABA is not good science.
Aquarian Monkey
>
> - Show quoted text -
Yes, Bob, you clearly know all about my daughter and her development.
At least more than I could possibly know. In my absence I guess I
forgot that.
earthpots
I just wanted to interject here. You just described someone similar to
myself. My mom worried because I was so quiet, I only spoke when I
absolutely _had_ too, so if there was any speech, it was limited to one or
two words. There were no 'terrible twos' or 'troublesome threes', my parents
just figured it was a blessing in disguise; after having two older siblings
who ended up in counseling for what they now call Oppositional Defiance
Disorder.
By the time I entered kindergarten, I had not only turned into a chatter
box, I had the classic signs of "Little Professor Syndrome". I was suddenly
using big words and complex sentences. This was back in the early 60's and
the pediatrician just shrugged it off as my being lazy. That was the answer
to everything, I was lazy; when I was ready, I would do all those 'normal'
things my peers did. I often look back and wonder what would have happened
if the treatments used today were used on me, what the results would be. I
know at one point, my mom had my sister on the Feingold diet, as it was the
big thing back then for kids with behavior issues. It also didn't work.
> I think his parents just thought he was a normal kid who would speak
> when he wanted to. In the current social climate, I am sure he would
> have been assessed for all sorts of things, and his parents would have
> been pressured to enroll him in some program or another. And at 4, he
> would have a remarkable "recovery" soon to be paraded as "cured".
>
>
>> I've seen that with my own two eyes.
>
> You've seen what? You've seen an autistic have a developmental spurt?
> Autistics do. Have you seen a good study that proves the effectiveness
> of the style of ABA your child attends?
>
>
>> You are free to think what
>> you want. I respect you no less for it and accept it as something we
>> disagree on, that's all. But it won't prevent me from sharing my
>> views or experience. Perhaps others can benefit from it. After all,
>> one of my main points is that parents need to take in as many
>> different views as they can find before trying to make their own
>> decisions. Both of our views are valid as a part of that end.
>
> Good science is valid. ABA is not good science.
--
Carol
Contessa of Consternation
Known to leave foes discombobulated
Autistic Spectrum Code v.1.0
AS? d- s--:+ a+ c+ p+ t-- f S+ p@- e+ h- r- n+(-) i+ P m-() M
http://www32.brinkster.com/ascdecode/
"I have run rings around you logically". Monty Python
Email at clay_p...@nospam.com, removing the 'nospam' and replacing
with 'msn'.
earthpots
I would have ended the conversation when he wrote this:
"There you go making a leap of illogic a la "Autism Speaks". Nobody
suggested parents should love their autistic children but leave them
unattended in a dark corner somewhere." There is a point where you just
can't reason with some, they have a mindset where they are right, you are
wrong. You can't change that, so it's best to move on. Personally, I think
you have been pretty involved with D, and AIR, you have been involved with
her therapy, and even stopped things you felt were hurting rather than
benefitting her. Never try to teach a pig to sing. It is a waste of your
time, and it annoys the pig.
Aquarian Monkey
>
> I would have ended the conversation when he wrote this:
> "There you go making a leap of illogic a la "Autism Speaks". Nobody
> suggested parents should love their autistic children but leave them
> unattended in a dark corner somewhere." There is a point where you just
> can't reason with some, they have a mindset where they are right, you are
> wrong. You can't change that, so it's best to move on.
I agree 100%. I should have quit, but didn't.
>Personally, I think
> you have been pretty involved with D, and AIR, you have been involved with
> her therapy, and even stopped things you felt were hurting rather than
> benefitting her.
I've made a concerted effort. None of her programs were geared toward
"making her indistiguishable from her peers." They were all geared
toward improving her level of functioning. No one was allowed to force
eye contact nor stop her from stimming. They weren't allowed to
forcibly hold her in her chair, nor push anything beyond what I would
consider the "mild protest" stage that all toddlers have when they are
asked to do something they may not want to do. I was never more than a
room away from her, and in the event I was, I had the baby monitor on
and I listened to everything that happened. Honestly, though, all of
my safegaurds and rules were largely unnecessary. Her team was filled
with respectful, loving people. She would anxiously await their
arrival every day. Not anxious in the bad way. Anxious in the "when
are they going to get here?" way. She still asks for a couple of them
and she hasn't had formal ABA/VB in over a year.
>Never try to teach a pig to sing. It is a waste of your
> time, and it annoys the pig.
>
> --
> Carol
> Contessa of Consternation
> Known to leave foes discombobulated
>
> Autistic Spectrum Code v.1.0
> AS? d- s--:+ a+ c+ p+ t-- f S+ p@- e+ h- r- n+(-) i+ P m-() Mhttp://www32.brinkster.com/ascdecode/
>
> "I have run rings around you logically". Monty Python
>
> Email at clay_pots...@nospam.com, removing the 'nospam' and replacing
> with 'msn'.- Hide quoted text -
Arak
Hear, hear!
I saw a wonderful article on About.com (I know... not scientific, but
I still like the article) about what not to do when your child is
diagnosed: http://autism.about.com/od/newtoautism/p/dontdothis.htm
Arak /|\
The article is by Lisa Jo Rudy and the full article is below: [my
comments are in square parentheses]
After the Autism Diagnosis:
If you're like many parents, your world changed when you first heard
the word "autism" used to describe your child. And, like any good
parent, your first inclination may be to learn all you can, find the
best doctors, and take aggressive action to fix the problem. Before
you launch yourself into action, though, you might want to get a quick
overview of what you're letting yourself in for.
Avoid Information Overload:
Thought you'd read up on autism in just a few days? Truth is, plenty
of people wind up spending unending weeks and months reading every
website, blog and book...attending every conference...and at the end,
they're more confused than when they started. Yes, it's a good idea to
inform yourself about the options. But one or two good books (I
recommend the Autism Guide for Dummies by Steven Shore) will give you
a good gist without overloading you with 10,000 different opinions
about everything from causes to treatments to adult life with autism.
Don't Worry Too Much About the "Whys" of Autism:
There are over two dozen theories of what causes autism. Most are
supported by at least one research study. A few possibilities -- cell
phones, WiFi, pitocin, mercury poisoning, older fathers, artificial
dyes and sweeteners. In short, unless your child is actually suffering
from a physical problem such as a food allergy or lead poisoning (and
it's worth your while to check into both), sweating the causes of
autism will probably drive you crazy.
Limit Your Interaction with Other "Autism Parents" [at least at
first]:
Of course, it's a good idea to reach out and get to know other parents
who are in your situation especially as you look into local
therapists, schools, funding, and so forth. Be aware that parents with
autistic children are often passionate about the therapists and
treatments they've selected. And it's easy to get overwhelmed as
parents insist that their approach is the only approach. The truth is
that no one knows the best approach for your child.
Don't Choose Treatments Under Pressure:
As you enter the autism world, you will meet teachers, parents,
doctors and therapists who are absolutely certain they know what's
best for your child. With all the best intentions in the world, they
will absolutely insist that you take your child to Dr. X, or travel
hundreds of miles for the cure offered by Dr. Z. Nod politely, take
notes, and do your own research. If the treatment sounds too good to
be true, costs too much money, or has no research behind it, you're
under no obligation to say "yes." Nor are you under any obligation to
report back to the insistent individual in your life.
Don't Choose Treatments Based Solely On the Scientific Research
[although I recommend going with treatments that have some scientific
and ethical basis - not just hearsay] :
In the best of all worlds, treatments are selected on the basis of
multiple independent double-blind studies. If only that were possible
in the autism world! In fact, few treatments for autism have been
tested in this way -- and even those that have are questioned based on
the quality of the research. That doesn't mean that none of the
treatments are helpful; only that they haven't been fully researched.
As a result, it's probably worth your time to look into several of
those that seem most available and relevant to your child.
[for instance, ABA/IBI have all sorts of scientific support, but
behaviour modification works on anyone! Of course it will look good in
studies. I still believe that this should not be the only option
because it only looks at extinguishing surface behaviours, not at the
reasons behind the behaviours]
Don't Obsess About Autism:
It's easy to obsess on autism. In fact, it's surprisingly easy for
parents, especially moms, to focus almost entirely on their child's
autism. Unfortunately, obsession can create more problems than it
solves. More than one marriage has fallen apart as the result of one
partner's becoming too focused on autism to attend to his spouse. Many
households have gone broke in the attempt to provide every treatment,
no matter how costly or obscure. And it's common for brothers and
sisters of children with autism to feel unfairly neglected by parents
who seem to care only about supporting a disabled sibling.
[If anything about autism ruins a marriage, IMHO, it is is usually one
parent getting too obsessed to exclusion of the others in the family.
Autism should not take over your life.]
Don't Assume You Always Know Best:
Parents are usually good at observing, describing and understanding
their children. Parents also, of course, need to advocate for their
children in school and elsewhere. But even mothers don't always know
what will work for their child and often a teacher or therapist will
discover a talent, need, ability or challenge that surprises you. In
short, maternal instinct is wonderful, but it has its limits. And by
insisting that you always know what your child needs, you may limit
the options available to him or her.
[My parents still don't get what the reasons behind my behaviours are,
and it's almost like they don't want to because they know better. No
they don't. They have no idea what it is like to be me any more than I
know what it's like to be them!]
Don't Overload Your Child (Or Yourself):
There is an understandable desire to see results from your efforts.
And with so much emphasis on early intervention, parents often want to
see their children "fixed" right away. But it's best to avoid the
temptation to leap into multiple therapies with the hope that
SOMEthing will work. Not only will you and your child be exhausted,
but it may be impossible to know what's really working. Remember that
there really is no "window of opportunity," and your child will
continue to learn and grow throughout his life.
[The 40 hour "workweeks" for children that ABA/IBI usually recommends
does little more than exhaust a child... I know this from personal
experience]
Don't Forget To Breathe:
Despite media hype to the contrary, it is extremely unusual for a
child to be accurately diagnosed with autism and then "recover"
perfect normalcy. Much of the time, though, if your child is receiving
solid 1:1 therapy, support, and love, he will develop skills and
relationships and continue to do so throughout life.
In other words, treating autism isn't about rushing to a cure.
Instead, it's about finding a set of supports and a way of life that
will work, with tweaks and adjustments, over time. No matter how
quickly you move, and no matter how much money you spend, your child
with autism is likely to remain autistic with all the ups and down
(and yes, there are "ups") that go with that diagnosis.
If you can, take time to enjoy your child, your mate, your family,
your life. Get a little fresh air. Remember, if you can, that your
child is not in danger of life or limb, and that he is still the same
person you have always loved.
earthpots
This was on on MSNBC today. I thought it appropriate to this discussion.
Two years of therapy can help children as young as 18 months, study says
http://www.msnbc.msn.com/id/34198284/ns/health-mental_health/
This appears to support Aquarian Monkey's experience with D. Granted, it was
a small study, so it doesn't prove anything, but it may lead to more
in-depth studies.
--
Carol
Contessa of Consternation
Known to leave foes discombobulated
Autistic Spectrum Code v.1.0
AS? d- s--:+ a+ c+ p+ t-- f S+ p@- e+ h- r- n+(-) i+ P m-() M
http://www32.brinkster.com/ascdecode/
"I have run rings around you logically". Monty Python
Email at clay_p...@nospam.com, removing the 'nospam' and replacing
with 'msn'.
Bob Badour
> Top posted.
>
> This was on on MSNBC today. I thought it appropriate to this discussion.
>
> Two years of therapy can help children as young as 18 months, study says
>
> http://www.msnbc.msn.com/id/34198284/ns/health-mental_health/
>
> This appears to support Aquarian Monkey's experience with D. Granted, it was
> a small study, so it doesn't prove anything, but it may lead to more
> in-depth studies.
Actually, it doesn't. The Denver Model is different from ABA/VB.
I would really like to get my hands on the full text of the study. The
abstract leaves a lot to be desired, and I have seen the press spin the
results several different ways. CNN seemed to spin ESDM as less
intensive than other ABA programs trumpeting the play aspect of it. On
the other hand, some "expert" from Calgary interviewed by CTV said she
was certain the "intensity" was "responsible for the results", which
sounded like a faith-based pronouncement from an ABA true believer to me.
I have some reservations about the control group. Given the sparse
detail published about the control group, I can see any number of ways
it might be gamed -- at least as many ways as the media can spin it. The
authors claim the control group received "community based interventions"
but I have seen nothing to indicate which communities or to indicate the
researchers even recorded what those other interventions were.
And then there is the issue of IQ. I am unaware of a reliable IQ test
for 12 or 18 month old infants making the claims about increased IQ
extremely suspect. In fact, it sounds more like marketing to me than
science, but I would have to see the full report before making a final
judgment on that.
Given the general paucity of information shared in the abstract, the
involvement of the "inventor" of ESDM and the involvement of a largely
political organization, I would wait for independent replication before
getting too excited. But I would, nevertheless, like to get my hands on
the full text.
Bob Badour
> Yes, Bob, you clearly know all about my daughter and her development.
> At least more than I could possibly know. In my absence I guess I
> forgot that.
I do not need to know anything about your daughter or her development to
know that your subjective observations do not make valid science.
I note that you have a very skewed double-standard when it comes to
evaluating things. When it comes to something common-sensical like relax
and love your child, you do not even bother to read the supporting
science and instead suggest it has flaws that it does not. The study I
cited addressed everything you brought up before you brought it up.
But when it comes to committing 18% of your daughter's waking hours (25%
of her weekdays) to a single specific intervention, you apparently do
not need any science to back the decision whatsoever.
Why the difference in standards? If not science, what drives your decision?
astri
> I would really like to get my hands on the full text of the study.
you can download it from the _pediatrics_ site for us$12.
-- astri
======================
to email send to astri
======================
at volcano dot org
======================
Bob Badour
> On Tue, 1 Dec 2009, Bob Badour wrote:
>
>> I would really like to get my hands on the full text of the study.
>
> you can download it from the _pediatrics_ site for us$12.
Assuming one has a credit card. I do not.
astri
interlibrary loan?
Bob Badour
> On Tue, 1 Dec 2009, Bob Badour wrote:
>
>> astri wrote:
>>
>>> On Tue, 1 Dec 2009, Bob Badour wrote:
>>>
>>>> I would really like to get my hands on the full text of the study.
>>>
>>> you can download it from the _pediatrics_ site for us$12.
>>
>> Assuming one has a credit card. I do not.
>
> interlibrary loan?
The libraries out here are unlikely to have anything like that, but I
will check. The UPEI library might have it, but that's an hour and a
half away, and my truck is a pig on gas.
Bob Badour
> astri wrote:
>
>> On Tue, 1 Dec 2009, Bob Badour wrote:
>>
>>> astri wrote:
>>>
>>>> On Tue, 1 Dec 2009, Bob Badour wrote:
>>>>
>>>>> I would really like to get my hands on the full text of the study.
>>>>
>>>> you can download it from the _pediatrics_ site for us$12.
>>>
>>> Assuming one has a credit card. I do not.
>>
>> interlibrary loan?
>
> The libraries out here are unlikely to have anything like that, but I
> will check. The UPEI library might have it, but that's an hour and a
> half away, and my truck is a pig on gas.
And wasn't it published online? Wouldn't the library only carry the
paper edition?
astri
> astri wrote:
>
>> On Tue, 1 Dec 2009, Bob Badour wrote:
>>
>>> astri wrote:
>>>
>>>> On Tue, 1 Dec 2009, Bob Badour wrote:
>>>>
>>>>> I would really like to get my hands on the full text of the study.
>>>>
>>>> you can download it from the _pediatrics_ site for us$12.
>>>
>>> Assuming one has a credit card. I do not.
>>
>> interlibrary loan?
>
> The libraries out here are unlikely to have anything like that, but I
> will check. The UPEI library might have it, but that's an hour and a
> half away, and my truck is a pig on gas.
that's why i suggested interlibrary loan. frequently, libraries can get
things shipped from far away libraries if they don't have it on board.
astri
> And wasn't it published online? Wouldn't the library only carry the
> paper edition?
pediatrics is a print journal also.
Aquarian Monkey
>
> I do not need to know anything about your daughter or her development to
> know that your subjective observations do not make valid science.
Bob, things do not need to be scientifically proven to be true.
>
> I note that you have a very skewed double-standard when it comes to
> evaluating things. When it comes to something common-sensical like relax
> and love your child, you do not even bother to read the supporting
> science and instead suggest it has flaws that it does not. The study I
> cited addressed everything you brought up before you brought it up.
I note that you have failed to comment on my main objections: I am not
certain that we can generalize from the nature of the relationship
between adolescents/adults and their parents to the nature of the
relationship between toddlers and their parents. I also do not know
how a research design of this nature can be used to show a causal
relationship, nor do I understand how a single study can be used to
"prove" anything. I don't even know that I need to read the full study
in order to have those objections. And again, I'm not questioning the
study. I'm questioning your application of it's results.
>
> But when it comes to committing 18% of your daughter's waking hours (25%
> of her weekdays) to a single specific intervention, you apparently do
> not need any science to back the decision whatsoever.
I haven't done the numbers...is that what they work out to be? I would
actually think it might be more, because when she wasn't in formal
therapy of some sort, I worked with her all the time. Every
opportunity I had to teach her something, I took it. And she never had
a single specific intervention. ABA/VB was just the one that seemed to
help the most, though I think that your notion of what that must mean
is probably not what it really was. Because if you would have seen
what it was like, I can hardly think you'd object to it.
> Why the difference in standards? If not science, what drives your decision?
I think we have established a long time ago that my decisions are not
always driven by science. I research and learn, evaluate and analyze,
and then I go with what "feels" right based on whatever happens in my
brain. Now, I do understand that to you that seems to be an inferior
way to live your life, but so far, it has worked pretty well for me. I
am not always consciously aware of how I have come to the conclusions
I have come to, nor can I always verbalize why I have come to believe
what I have come to believe. My brain doesn't work that way. But, the
method has very rarely failed me, so I'm sticking with it, no matter
what others might think of it.
I don't really understand why some people are so resistant to the idea
that properly utilized interventions can help a kid with autism. It
would be a rather bleak world if nothing could help a kid learn to
function better, no?
Bob Badour
> On Wed, 2 Dec 2009, Bob Badour wrote:
>
>> And wasn't it published online? Wouldn't the library only carry the
>> paper edition?
>
> pediatrics is a print journal also.
Yes, I know. The study was published online. It does not appear in the
print edition or in either recent supplement that I can tell. The tables
of contents for those appear online too.
astri
> astri wrote:
>
>> pediatrics is a print journal also.
>
> Yes, I know. The study was published online. It does not appear in
> the print edition or in either recent supplement that I can tell. The
> tables of contents for those appear online too.
ah, ok
it's still possible that a library can get access to the online
journal, and may be able to get interlibrary loan. whenever i've
requested an interlibrary loan for a journal article, they've always
just sent a photocopy, so it's possible that they may send a download
to a library that doesn't have online access.
caveat: i've always done this through university libraries, so i do not
know for sure that non-university libraries have access. it is worth a
try, however.
do you have an equivalent to the community college system in canada? if
you have a local community or junior college, that library might well
be connected to the university library systems.
all of these are things you might have thought of already, of course.
Bob Badour
> On Wed, 2 Dec 2009, Bob Badour wrote:
>
>> astri wrote:
>>
>>> pediatrics is a print journal also.
>>
>>
>> Yes, I know. The study was published online. It does not appear in
>> the print edition or in either recent supplement that I can tell. The
>> tables of contents for those appear online too.
>
>
> ah, ok
>
> it's still possible that a library can get access to the online
> journal, and may be able to get interlibrary loan. whenever i've
> requested an interlibrary loan for a journal article, they've always
> just sent a photocopy, so it's possible that they may send a download
> to a library that doesn't have online access.
>
> caveat: i've always done this through university libraries, so i do not
> know for sure that non-university libraries have access. it is worth a
> try, however.
>
> do you have an equivalent to the community college system in canada? if
> you have a local community or junior college, that library might well
> be connected to the university library systems.
>
> all of these are things you might have thought of already, of course.
Yes, we have community colleges in Canada. You have to keep in mind that
I live in a province with the population of a small city. Both the
community college and the university are in Charlottetown, about an hour
and a half from here. I suppose it's possible the community college has
some presence in Summerside, but that's still almost an hour from here.
astri
> Yes, we have community colleges in Canada. You have to keep in mind
> that I live in a province with the population of a small city. Both
> the community college and the university are in Charlottetown, about
> an hour and a half from here. I suppose it's possible the community
> college has some presence in Summerside, but that's still almost an
> hour from here.
hopefully, then, your public library can do this.
Arak
>
> CNN seemed to spin ESDM as less
> intensive than other ABA programs trumpeting the play aspect of it. On
> the other hand, some "expert" from Calgary interviewed by CTV said she
> was certain the "intensity" was "responsible for the results", which
> sounded like a faith-based pronouncement from an ABA true believer to me.
I went through an institutional ABA program in Calgary, the same one
this so called expert is promoting and can tell you that, yes, it gets
results. I can pass as normal very easily. However. it did not help
anything for me. I learned how to fake normality thanks to that Lovaas-
style ABA program but the problems that caused my behaviour never got
dealt with or even looked at and it all came back to bite me ten years
ago.
As far as I'm concerned, having been at the business end of this, ABA
is *not* a treatment for a medical problem. My medical problems were
ignored thanks to the belief that autism is a behavioural disorder and
that underlying conditions mean little to nothing to a behaviourist.
They diagnose autism based on what they see and they 'treat' it the
same way until those 'seen' behaviours disappear.
It may work to reduce behaviours and get a child to act normal, but it
is an educational system that uses reward and/or aversive to shape
behaviour.
Behaviour modification works on almost anyone under the right
conditions! Anyone who's ever trained an animal or read up on
brainwashing can tell you that repetition, exhaustion of the subject
(40-hour work week for toddlers anyone?), rewards and aversives work
quite well to bring about desired behaviour. I could make a behaviour
analyst act like a dog if I used the same methods: intensity,
exhaustion, repetition, consistency in reward and punishment and no
room for escape until the desired behaviour is shown.
I do not consider this study or many of the others on ABA to be a
sufficient base to go by nor an adequate *only* treatment for autistic
children. ABA may work as a good supplement, but this should not be
the only way to go, in my opinion.
Then there's the expense. I cannot believe how much money these ABA
folks make! Did you know that in Calgary, one does not need a
university degree to become an ABA therapist? Experience with
babysitting kids is the only requirement to break into the business...
they'll train you. I know this because I decided to go looking through
the want ads for behaviour therapists for autism, just to see what was
needed for one to break into the business and the maximum requirement
for most was experience in taking care of children. University and
training not necessary because it is provided.
I even asked around at a few places, saying that I don't have my
university degree yet and they said that it was ok. I could still
become a behaviour therapist for autism if I wanted to. I could even
hang up a shingle and declare myself a therapist if I wanted to. The
problem is, I couldn't live with myself if I ever did get into that
field. It goes against everything I believe in.
There is a lot of money to be made and many of these studies are
funded/conducted by people with a high stake in the success of ABA/IBI
which could lead to dishonesty in reporting or skewing of results in
their favour.
A recent one that I saw is: "Retrospective analysis of clinical
records in 38 cases of recovery from autism" -
Ann Clin Psychiatry. 2009 Oct-Dec;21(4):195-204.
Retrospective analysis of clinical records in 38 cases of recovery
from autism.
Granpeesheh D, Tarbox J, Dixon DR, Carr E, Herbert M.
Center for Autism and Related Disorders, Tarzana, CA 91356, USA.
D.Gran...@centerforautism.com
BACKGROUND: Twenty years of research on early intensive treatment
using applied behavior analysis (ABA) for children with autism has
consistently produced robust effects. There appears to be a subset of
children whose response to intensive ABA treatments includes achieving
a level of functioning that is indistinguishable from typically
developing peers. The purpose of this study was to describe a subset
of children who recovered from autism following intensive ABA
interventions. METHODS: We reviewed the clinical files of 38 children
with autism who achieved an optimal outcome after receiving intensive
ABA services. RESULTS: The mean age at intake was 40 months. Average
IQ was 83.6 at intake and 107.9 at discharge. Mean adaptive skills
were 68.04 at intake and 88.87 at discharge. CONCLUSIONS: Our study
corroborates the finding that some children with autism who receive
early intensive behavioral intervention achieve functioning in the
average range.
PMID: 19917210 [PubMed - in process]
Some concerns I have:
1. No control group
2. Were these kids receiving any other treatments at the time?
3. Where are these kids now? How are they doing now?
4. Have the supposed benefits of ABA/IBI continued into adulthood?
I still want to see a long-term study on the long-term effects of ABA/
IBI. How do these kids fare when they grow up? Can they live
independently? Can they function fully? They may do fine as kids with
ABA/IBI, but adulthood is a whole different story!
>
> And then there is the issue of IQ. I am unaware of a reliable IQ test
> for 12 or 18 month old infants making the claims about increased IQ
> extremely suspect. In fact, it sounds more like marketing to me than
> science, but I would have to see the full report before making a final
> judgment on that.
>
This bit about increasing IQ is also interesting given that IQ is not
a reliable indicator for intelligence with autistic people in the
first place. Autistics often score higher on non-standardized IQ tests
like the Raven test. The standard test often produces poor results due
to the nature of its administration. Therefore, I cannot accept the
change in IQ as satisfactory results either.
Another interesting factoid about Geraldine Dawson: She is the Chief
Science Officer of Autism speaks and makes just under $700,000 per
year. (Source: Autism Speaks' 990 tax report from their website:
http://www.autismspeaks.org/docs/Autism_Speaks_Form_990_2008.pdf)
She stands to make quite a bit of money from studies such as this
which smells of conflict of interest to me.
Over the last week, I have seen a number of similar studies lauding
ABA/IBI making the circuit.
Anyway, that's my take on the topic. :^)
Arak /|\
Canth
wrote:
Failing that, is there any research facility or corporate headquarters
with a library nearby? These often are part of the interlibrary loan
system.
AS! ds++:+++ a++ c+++ p++ t+ f-- S+ p+ e++ h++ r++ n++ i+ P+ m++ M
Arak
> Top posted.
>
> This was on on MSNBC today. I thought it appropriate to this discussion.
>
> Two years of therapy can help children as young as 18 months, study says
>
> http://www.msnbc.msn.com/id/34198284/ns/health-mental_health/
>
> This appears to support Aquarian Monkey's experience with D. Granted, it was
> a small study, so it doesn't prove anything, but it may lead to more
> in-depth studies.
What is the title of the study? I am in university and have access to
lots of full text journal articles. Unfortunately, MSN does not
properly cite the article!
With the title and when it was published, I can probably get a full
text copy of the article in PDF format.
Arak /|\
Bob Badour
> On Wed, 2 Dec 2009 06:54:46 -1000, astri <as...@invalid.invalid>
> wrote:
>
>
>>On Wed, 2 Dec 2009, Bob Badour wrote:
>>
>>
>>>Yes, we have community colleges in Canada. You have to keep in mind
>>>that I live in a province with the population of a small city. Both
>>>the community college and the university are in Charlottetown, about
>>>an hour and a half from here. I suppose it's possible the community
>>>college has some presence in Summerside, but that's still almost an
>>>hour from here.
>>
>>hopefully, then, your public library can do this.
>
> Failing that, is there any research facility or corporate headquarters
> with a library nearby? These often are part of the interlibrary loan
> system.
The industry out here is potato farmers and fishermen. No headquarters
or research facilities anywhere near here.
But in any case, someone was kind enough to lend me their copy. I
haven't had a chance to read through it yet, but I will as soon as I get
a few moments.
Bob Badour
Bob Badour
fatigue and drowsiness from sleep apnea.
Aquarian Monkey wrote:
> On Dec 1, 10:25 pm, Bob Badour <bbad...@pei.sympatico.ca> wrote:
>
>>I do not need to know anything about your daughter or her development to
>>know that your subjective observations do not make valid science.
>
> Bob, things do not need to be scientifically proven to be true.
But when the science suggests a belief is false, it is very likely false
regardless of personal certainty. Again, the best I can do is direct you
to Gilovich's /How We Know What Isn't So/.
>>I note that you have a very skewed double-standard when it comes to
>>evaluating things. When it comes to something common-sensical like relax
>>and love your child, you do not even bother to read the supporting
>>science and instead suggest it has flaws that it does not. The study I
>>cited addressed everything you brought up before you brought it up.
>
> I note that you have failed to comment on my main objections:
All of your objections were covered in the study itself. Why would I try
to duplicate their effort when I don't have the resources they did? That
makes no sense at all. Go read the study to get the specifics to address
your objections.
>>But when it comes to committing 18% of your daughter's waking hours (25%
>>of her weekdays) to a single specific intervention, you apparently do
>>not need any science to back the decision whatsoever.
>
> I haven't done the numbers...is that what they work out to be?
Yes, give or take.
> I would
> actually think it might be more, because when she wasn't in formal
> therapy of some sort, I worked with her all the time. Every
> opportunity I had to teach her something, I took it. And she never had
> a single specific intervention. ABA/VB was just the one that seemed to
> help the most, though I think that your notion of what that must mean
> is probably not what it really was.
Regardless what I think the ABA/VB intervention involves, the science
shows it is ineffective and suggests it might actually hinder
development of natural talents. I appreciate you were modest in the
intensity to mitigate that very risk.
> Because if you would have seen
> what it was like, I can hardly think you'd object to it.
I don't object to it as parental respite. I just want parents to realise
that is what it is and to fully understand the possible consequences.
It's ineffective and parents love it. Why? Obviously, it meets some need
the parent has even if it does nothing for the child.
>>Why the difference in standards? If not science, what drives your decision?
>
> I think we have established a long time ago that my decisions are not
> always driven by science. I research and learn, evaluate and analyze,
> and then I go with what "feels" right based on whatever happens in my
> brain.
That's obvious. On one hand, you make a pretense of scientific objection
to a study when your specific objections only prove you didn't examine
the science and have no intention to. On the other hand, you chose an
intervention for personal emotional reasons then ex post rationalized
the decision by attributing an outcome to the intervention that the
science says has no correlation.
Your daughter is growing and learning. Terrific! You are proud of her
progress. Awesome! You feel good about enrolling her in ABA/VB. That's
good too.
It's important for parents to have positive feelings for their children.
Nobody wants parents to feel overwhelmed. Nobody wants parents to resent
their lot in life. Nobody wants parents to worry constantly about the
safety of their kids. Nobody wants parents to feel constantly
frustrated. Nobody wants parents to feel frightened for their own
safety--not that that applies to you, but it does to the parents of some
autistics.
If 15 hours a week of ABA/VB helps with your state of mind, then it
serves a purpose. It will be better for everyone, though, when parents
are honest about the purpose it serves. Honest with themselves. Honest
with everyone else.
When parents inaccurately attribute progress to an intervention, it does
wonders to sell the intervention. However, it misallocates resources,
and might cause some parents to forego better alternatives. The kids of
those other parents might desperately need those better alternatives.
> I don't really understand why some people are so resistant to the idea
> that properly utilized interventions can help a kid with autism.
Even when the science proves an intervention doesn't help? Why would
anyone embrace such a foolish idea? I actually *do* understand why some
people are so resistant to the idea that many popular interventions do
nothing or worse than nothing. Again, I direct anyone interested to
Gilovich's book.
> It
> would be a rather bleak world if nothing could help a kid learn to
> function better, no?
Why the sophistry? Nobody suggested that absurdity.
Aquarian Monkey
> I apologize for taking so long to respond. I have been struggling with
> fatigue and drowsiness from sleep apnea.
You and me both. I have the attention span of...well...not a very good
one lately. Too many demands and not enough down time.
And my memory stinks, too...I can't even remember the study we were
discussing! LOL!
I do value your opinion, Bob. You challenge me to think. And even when
we disagree, I feel better for having had access to your opinion. I'm
sure you get very frustrated with me at times. I think I have told you
that you remind me of my dad. He gets very frustrated with me because
I have the *ability* to be logical and rational, but sometimes
willfully choose not to be. I think after 42 years, he has just given
up trying to change it! LOL!