Re: Digest Number 900

[Guest guest]

,

You put the " medical " issue well regarding Texas Children's Hospital's

new program. If it were a little-understood cancer, they would go with the

treatment that had the most research support. ABA is, according to the U.S.

Surgeon General, the only treatment for autism with scientific support. The

states of Maine, New York, Massachusetts, Wisconsin and others now specify

ABA as treatment of choice in their early childhood " best practices "

guidelines. How TCH can justify selecting Greenspan's " floortime " as its

treatment modality is beyond understanding. Capricious...with our children's

lives at stake. The only hope is that parents will educate themselves and

not agree to pay the $24,000 tab. But, as you note, the TCH name is quite

highly regarded, so many parents will accept that they are going to get the

" best " treatment for their child. It's unconscionable.

S.

[Guest guest]

The problem with " choosing " a specific treatment modality is that it

precludes the individual differences of the child. Some children

undoubtably respond much better in a one-on-one discreet trial

training program. This is what many people call ABA, although DTT

doesn't begin to scratch the surface of the field of ABA. ABA can be

applied in any situation or in any treatment modality. Some

modalities are better to teach certain skills. Floor-time is a very

respected methodology and has proven effective for many children. It

is, however, merely a beginning. The most efficacious programs are

the ones that look at the skills of each child, their learning style,

their sensory/motor needs, their level of functioning and every other

relevant issue. Then you develop a program. It needs to be flexible

and respond to the changing child. There is no one size fits all

program that works for every child. If you think that your child

needs discreet trial training you should push for it. TCH determined

that the floor-time model would be the most effective for the largest

number of children. I hope they wouldn't think that it is the right

program for ALL children anymore than I would hope that no parent

would think that a single program is the end-all be-all program for

their child.

[Guest guest]

To M:

>The problem with " choosing " a specific treatment modality is that it

precludes the individual differences of the child. . . .This is what many

>people call ABA, although DTT doesn't begin to scratch the surface of the

field of ABA. ABA can be applied in any situation or in any >treatment

modality.

That's true. That's why it's really the best starting point for ASD

children. A good program for young children balances DTT (discrete trial

training) [about 40%] with NET (natural environment training ) [about 60%].

ABA is very wholelistic because it does take the individual child's needs

into account, encourages their strengths and targets their weaknesses in a

very effective manner. It looks at fine motor, gross motor, verbal, and of

course other behavioral issues that may come up. I think it's the most

wholelistic program out there.

>Floor-time is a very respected methodology and has proven effective for

many children.

Yes, floor time has been recognized even by the National Academies of

science. But please, let Dr. Greenspan put his money where his mouth is.

Show me the single study that that he has published, or even that he's

conducted and intends to publish that shows recovered children, or children

who were able to mainstream and be indistinguishable from their peers like

Lovaas did in his study many other programs have been able to replicate.

The New York Department of Health put together a panel that reviewed all the

treatment modalities available for ASD children. They looked at auditory

integrated therapy, floor time, massage therapy, . . . . The only therapy

they found backed up by science in Applied Behavior Analysis.

>The most efficacious programs are the ones that look at the skills of each

child, their learning style, their sensory/motor needs, their level of

>functioning and every other relevant issue.

My son's ABA program did this. Any good ABA program designed and overseen

by a BCBA (board certified behavior analyst) does this. He spends very

little time in DTT, actually.

>TCH determined that the floor-time model would be the most effective for

the largest number of children.

Based on what? An attempt to find something " that just wasn't that ABA

stuff " that would show some improvement? I thought treatment was supposed

to be backed by scienctific verification or else it just experimental. As I

said earlier, if you had a child with say leukemia, and there were two

treatment options, one that showed some improvement but hadn't been verified

scientifically, or another treatment that showed in peer reviewed studies, a

47% improvement, which one do you think the doctor would choose. ly, I

think that if the doctor chose the treatment that provided some improvement

he would be sued for malpractice.

Basically all TCH is doing is wasting that precious window of neurological

opportunity that is really the only thing ASD children have going for

them--and they have the gaul to charge $24,000 a year to do it.

[Guest guest]

Sorry, I forgot to answer your question about how TCH choose the

floor-time model. The people that bankrolled the program, several

million dollars worth, had some personal experience with it and had a

relationship with Dr. Greenspan. The whole thing was set up with

private contributions. They also wanted to include OT, PT, SLP,

Dietary, Neurology and Psychology services as part of the program.

The last I heard is that it hasn't done well. Probably I'm over-

reacting to the criticsm of a private program. I jut wish people

wouild get behind advocating for services through the government.

Recently there was a Legislative Forum held in Houston. Several state

legislators attended. The purpose was to raise awareness of the

issues of individuals with disablities. A lot of effort was put into

organizing this by a group of volunteers and letting disablity groups

know about this many weeks ahead of the event. I sent e-mail messages

to a couple of groups two months before the event. No one put it in

their newsletter even though they had more than enough notice. Some

sent private e-mail messages to some of their members. Attendance was

bolstered by MHMRA employees and some consumers that were provided

transportation by MHMRA employees. Even though attendance was decent,

it did not begin to scratch the surface in terms of representing the

number of people in this area affected by lack of adequate funding

for services currently provided from early childhood, school and post-

school. I was really disappointed. I know it was a school night but

for gosh sakes what could have been more important than showing up by

the thousands to demonstrate to our elected officials how important

this is? Until enough people get together and let these people know

that it's a pay-me-now or pay-me-later deal, they do not have the

impetus to move. The legislator that I spoke to later said that he

has heard from exactly one person about services for their child.

This is pretty representative as I understand. Occasionally someone

will have an issue and contact their legislator about it. there

doesn't seem to be a concerted effort to educate the folks that

decide how our tax dollars are spent about what is needed.

[Guest guest]

I know what an ABA is. I have been trying for two days now to find

out about " floor time. " I have read about the theory of it, and that

has made it clear as mud. What I am wanting to know is exactly what

do they do with the child who is using this plan. I can find nothing

that says " first we do...... " I am wanting to know exactlly what

this is in case one of my daughter's doctors decides this would work

for her. I want to 1) know exactly what they are talking about

before hand, and 2) be able to fight this type of treatment if I find

it not to be in my child's interest. I would appriciate any

information.

Thank You,

Carol

[Guest guest]

I went to a conference recently and they discussed floor-time as a

way to increase the range of a child's social referencing. That range

can be anywhere from a couple of inches to a couple of feet for

children with ASD's. This lack of range inhibits their ability to

connect in a meaningful way with others around them. For example,

with a teacher standing in front of a class giving instructions. If

you can get a child's frame of reference to expand ever outward, they

can have more meaningful social relationships and acquire the skills

that will allow them to have a greater opportunity for successful

relationships. The Interdisciplinary Council on Developmental and

Learning Disorders (www.icdl.com) is a good source of information.

[Guest guest]

In a message dated 1/29/05 7:35:58 AM Pacific Standard Time, PozHealth writes:

So it would be interesting to see what happens with long term use of

Metformin or piogitazone ( insulin sensitizers) with exercise for people with a

hump

I've had a buffalo hump for several years. It seems to vary in size, sometimes diminishing, but always there. I have been taking metformin for diabetes for several years, but can't say if it has really lessened the hump. I know SF General Hospital was doing a study, but I was rejected from it because of my diabetis status. They said I should be on the Metformin, anyway, and that is when I started taking it.

Ed

[Guest guest]

In a message dated 1/29/05 7:35:58 AM Pacific Standard Time, PozHealth writes:

So it would be interesting to see what happens with long term use of

Metformin or piogitazone ( insulin sensitizers) with exercise for people with a

hump

I've had a buffalo hump for several years. It seems to vary in size, sometimes diminishing, but always there. I have been taking metformin for diabetes for several years, but can't say if it has really lessened the hump. I know SF General Hospital was doing a study, but I was rejected from it because of my diabetis status. They said I should be on the Metformin, anyway, and that is when I started taking it.

Ed

[Guest guest]

In a message dated 1/29/05 7:35:58 AM Pacific Standard Time, PozHealth writes:

So it would be interesting to see what happens with long term use of

Metformin or piogitazone ( insulin sensitizers) with exercise for people with a

hump

I've had a buffalo hump for several years. It seems to vary in size, sometimes diminishing, but always there. I have been taking metformin for diabetes for several years, but can't say if it has really lessened the hump. I know SF General Hospital was doing a study, but I was rejected from it because of my diabetis status. They said I should be on the Metformin, anyway, and that is when I started taking it.

Ed