[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Sara White]

Again … a few points of clarification on another anonymous post.

"For a treatment to be validated on scientific method it must be able to be replicated…. No one has been able to replicate the Lovaas' study."

I think that one needs to consider the outcome variable that is important to you when looking at scientific data. Is it important that kids "recover", "become indistinguishable from their peers", or "lose the diagnosis"? Or is it important that they improve their skills in the areas of communication, play, academics and social interaction. I for one put emphasis on the later. While I agree that no study has been able to replicate the 47% of kids that "recovered" that Lovaas found in his 1987 study there have been several other studies (e.g., Brinbrauer & Leach, 1993, Smith, et al., 1997, and Sheinkopf and Siegel, 1998) that have shown that though not as many children "recovered", most of the children in the experimental groups made significant gains in skill and IQ. The point being that whether or not a finding has been replicated may depend on which part of the finding you're looking at.

Also, it should be pointed out that ABA and discrete trial are technically not equivalent terms. Discrete trial (or the Lovaas method) is one particular technique that falls under the umbrella of ABA. If we look at the research literature on ABA as a whole, there are even more studies and more support for other intervention techniques which have been replicated many times over (e.g., functional communication training to reduce aggressive or self-injurious behavior or specific methods of toilet training).

So, again it comes back to the point that ABA has been proven to be an effective teaching method for children with autism, the findings have been replicated and again ABA as a whole is the only area of intervention for children with autism that has been empirically validated.

Sara

P.S. Again, a lot of these references are in the NY Department of Health Clinical Guidelines if anyone is interested.

[Sara White]

Again … a few points of clarification on another anonymous post.

"For a treatment to be validated on scientific method it must be able to be replicated…. No one has been able to replicate the Lovaas' study."

I think that one needs to consider the outcome variable that is important to you when looking at scientific data. Is it important that kids "recover", "become indistinguishable from their peers", or "loose the diagnosis"? Or is it important that they improve their skills in the areas of communication, play, academics and social interaction. I for one put emphasis on the later. While I agree that no study has been able to replicate the 47% of kids that "recovered" that Lovaas found in his 1987 study there have been several other studies (e.g., Brinbrauer & Leach, 1993, Smith, et al., 1997, and Sheinkopf and Siegel, 1998) that have shown that though not as many children "recovered", most of the children in the experimental groups made significant gains in skill and IQ. The point being that whether or not a finding has been replicated may depend on your interpretation of that finding.

Also, it should be pointed out that ABA and discrete trial are technically not equivalent terms. Discrete trial (or the Lovaas method) is one particular technique that falls under the umbrella of ABA. If we look at the research literature on ABA as a whole, there are even more studies and more support for other intervention techniques which have been replicated many times over (e.g., functional communication training to reduce aggressive or self-injurious behavior or specific methods of toilet training).

So, again it comes back to the point that ABA has been proven to be an effective teaching method for children with autism, the findings have been feplicated and again ABA as a whole is the only area of intervention for children with autism that has been empirically validated.

Sara

P.S. Again, a lot of these references are in the NY Department of Health Clinical Guidelines if anyone is interested.

[Deleted User]

As a parent member of both ASBC and FEAT of BC, I would be very interested in seeing a response to the posting by Anonymous on Wednesday, July 17, 2002 – 08:45 am. Would one of the ASBC Executive Board members care to address those issues that relate directly to ASBC Board activity? Perhaps some unwarranted fears may be put to rest?

Alexandria

[Deleted User]

As a parent member of both ASBC and FEAT of BC, I would be very interested in seeing a response to the posting by Anonymous on Wednesday, July 17, 2002 – 08:45 am. Would one of the ASBC Executive Board members care to address those issues that relate directly to ASBC Board activity? Perhaps some unwarranted fears may be put to rest?

Alexandria

[Deleted User]

For a treatment to be validated on scientific method it must be able to be replicated…. No one has been able to replicate the Lovaas' study. Some of that is believed to be based on a lack of random selection of test subjects and the removal of aversives…. So the study is not as scientific as you might want to believe. ABA has its place and has been helpful to many but again the cost is a serious issue.

[Sara White]

While I definitely sympathize with any parent that can not afford treatment for their child, I think that there are a few factual points from anonymous' post that bear correcting:

"I also chose not to do it because the original studies came from Nazi Germany when they were trying to make normal human beings into robots. A far cry from what I wanted for my son."

I'm not sure where this information came from and whether you are referring to the original ABA studies or the original studies of ABA with children with autism, but in either case I can ASSURE you that this information is incorrect. The original work on ABA with humans was done by B.F. Skinner and his followers in the 1950's and 60's in the United States. The original work applying ABA to children with autism was done by Lovaas in the 1970's again in the US.

"There are many protocols for autism that have some basis in science and are backed with scientific trials. Double blind studies…. DMG, Secretin, and nutritional supplements, music therapy, auditory integration to name a few."

I would agree that in the loose sense of the term you could say that some of the methods mentioned have "some basis in science" but I would also add "but not much" at the end of that statement. To my knowledge there are no studies published in peer reviewed scientific journals (bear in mind that any "study" can be posted on the internet and that by no means means that it's "scientific) proving the effectiveness of any of the mentioned therapies for autism … or any other therapy for that matter aside from ABA for children with autism. I know that some trials with secretin are currently in progress, but none of that data is yet available. As for music therapy and auditory integration training, I would refer parents to the Clinical Practice Guideline Technical Report: Autism/Pervasive Developmental Disorders Assessment and Intervention for Young Children put out by the New York State Department of Health Early Intervention Program in 2001. In this document all of the available interventions for children with austism are reviewed by looking at data published in scientific journals. The findings of these articles and a critique of the scientific methodlogy used in each, along with risks and benefits to each type of therapy are clearly outlined. To paraphrase their findings, the only method for treatment of children with autism that has scientific evidence is ABA (not strictly discrete trial therapy, but ABA as a whole). While there is some evidence that psychoactive medications may reduce some maladaptive behaviors, in terms of teaching children new skills, ABA has been the only intervention that has been empirically validated. DMG, auditory integration, secretin, and music therapy were found by the panel to have insufficient scientific support.

Just a few points that I thought warranted clarification. If anyone wants information on how to get a copy of the NYDOH guidelines, they can email me and I would be happy to help.

Sara

[Deleted User]

To David Chan,
Thank you for your thoughtful explanation of ABA, and what it teaches. Speaking as a "caregiver" for people who have never had any treatment, let alone any effective teaching(most grew up in institutions). I have researched / read anything I could get my hands on, to try to be effective as a teacher, and to try to understand how the people I support may be thinking and how they learn…. Your explanation of (what I've found to be) a complex treatment really made sense to me. Thank you for shedding so much light on a very important subject.

Tina

[David Chan]

"I also chose not to do it because the original
studies came from Nazi Germany when they
were trying to make normal human beings
into robots. A far cry from what I wanted for my
son."

Where in the world did this come from? If you
choose not to formally use an ABA program for
your child, that's fine, and your choices as a
parent should be respected. However,
making inflammatory remarks like those
shows a decided lack of respect for the
parents that are doing a program with their
children. That, alas ,I feel is a non-starter. I
really find the reference offensive.

Let’s face it every time you give your child,
typical or otherwise an instruction such as "it's
dinner time, come and get it" and then you
prompt them to come to table, what you are
doing is ABA, you shape their behaviour to get
them to come to the dinner. ABA. You bet,
because if you didn't do that dinner would
never get eaten. Expand that concept of
instruction and follow-through to a global
context for your child with autism, add data
taking, you have in a very simplistic and
abbreviated form,an ABA program.

I do not disagree with the fact that the
programs are costly, but that just gives
everyone more reason to lobby for necessary
funding.

"There are many protocols for autism that
have some basis in science and are backed
with scientific trials. Double blind studies….
DMG, Secretin, and nutritional supplements,
music therapy, auditory integration to name a
few. I would caution any one into thinking that
any one therapy is the panacea for autism."

Correct, in any given day there will be many
"therapies" for Autism. Bottom line, the
"treatments " that are listed aren’t FREE and
funded either, We all understand the concept
of Caveat Emptor,"let the buyer beware". We
are basically a cash cow for anyone who has
a fix for our guys. Parents will always pay,
because we DO want a magic bullet to help
our kids, let alone cure them.

The scattered eclectic approach just doesn't
work. Here is my reason for this observation:
You try, this, then you try that, and there is a
little improvement here, and a little there, but
nothing earth shattering, so you move on.
Meantime, every quasi success or failure
lowers the expectation you have for the kid,
because if the "STUFF" is so great then how
come my kid isn’t doing better. It’s either the
"Treatment " or it’s my kid. Well do we really
want to go down that alley?

How many things can you try? Most of the
"Other Therapies" do not address two really
important issues that affect our kids.

One, self-stimulatory/ socially unacceptable
behaviours that places them apart from the
mainstream society

Two, their ability to process information which
is not the same as other folk

At the end the day what we really want for our
kids is to be functional and happy in their
community. You can't have that, if your are
stimming and lacking necessary skills.
ABA will get you there. Instantly, no, but surely.

As for the ASBC V. FEAT thing. People are
fundamentally opposed to change. I like my
hot dogs with ketchup and mustard. You
know Chili Cheese dogs are really good. The
point, The new ASBC board hasn't done
anything, other than exist, so let them do their
thing, have an open mind, you may be
surprised. You may like it.

That's my two cents.

Dave, Mr. P's Dad

[Michelle Weis]

Hi Everyone

In regards to a dentist…I know a great dentist I used for my son when I lived in BC. He was in Mission. His name is Dr. Dewji. (he's in the book, and I would definitely recommend him.

In terms of the other posts that have been transpiring…I agree 100% with Barbara. We should all use Barbara as a role model because of her incredible drive to help her son. And to FEAT… they have been the only organization that doesn't blow smoke up your but. FEAT is the force behind every change that has happened in BC for children with autism. The government didn't just decide that these children need help.

My oldest child Bradley was diagnosed in 1997 and we started an ABA program right away. No he did not recover…but has made more gains through ABA than anything else available. What I also realized is that my child needs ABA first and then you can experiment if you so chose with other types of ideas. But ABA is the foundation for continual progress. I myself, before ABA had tried DMG, nutritional supplements and a few other "cure of the days" but nothing worked. That to me, was because DMG or the others could not teach my child his letters, to behave properly at McDonalds or how to shower himself. Only good teaching can do that. That's why 5 years later my son is still in an ABA program. I could not in good conscience put my son through more agony than his disorder already does by subjecting him to therapies that show no data/science behind it. Our children go through enough.
In January of 1998 we started a second program for my younger son who was diagnosed as well with autism when he was 19 months. Talk about overwhelming money issues. I knew that ABA was the right thing to do. I knew it was right the first workshop we had. Taylor (my youngest)was in his program for 2 years when he lost his diagnosis. And two years later he has only made positive gains. He is going into grade 1, has a lot of friends and for him, autism is a thing of the past. He now helps his brother to learn and has a tremendous amount of patience and understanding with Brad. I don't know if he is cured because I cannot forsee his future but I know right now he has lost his diagnosis and lives a happy, full, life.
One thing I have learned is if you want a diagnosis fast you'll get it, if you want treatment for your child, you'll get it. You need a tremendous amount of will, sacrafice, time, energy etc. But that is what FEAT is all about. No body gets paid at FEAT but the staff there work around the clock, 7 days a week, that is why things get done. FEAT does not promote other methods because the whole mandate is to provide children with autism medically necessary treatment. Last I checked there still is no other method. FEAT does not judge anyone based on assumption, if you are a true FEAT member you would know to base your judgments on facts and research. Networking is about sharing your experiences to help each other and FEAT does that well. In order to pay for our children's programs we moved into my parents house for 4 years. Talk about hitting rock bottom, but my children got treatment and it saved Taylor's life. No one from FEAT judged me. They only commended me for sacrificing what I could for my children. I feel everyone suffers and no one child deserves better treatment than the other. That is why FEAT fights so hard… for all children to receive medically necessary treatment regardless of the ability to pay. I am happy for those in programmes and sadened for those who cannot afford it. I still can't afford it that is why we moved to Ontario. The housing, etc. is cheaper and we are able to afford more for Bradley.
I was asked to put two cents in so I wanted to say on more thing. For the five plus years I have been involved with FEAT I have never seen such devoted, supportive, driven bunch of individuals. When you look at the data FEAT has accomplished more in the past 6 years than any other agency. We should take our hats off to them and support them for their tireless efforts. I have a tremendous amount of respect for Sabrina,(she's like the energizer bunny) and all the FEAT members for sticking together to provide treatment for our children. Always remember, without FEAT our children would be in a much worse state of affairs.

Michelle

[Debra Antifaev]

Dear Anons
I'm sorry to hear that you cannot afford ABA programs, it breaks my heart to hear of families struggling to provide for their children. That is the very thing FEAT has been fighting for for years. Money should NEVER be a factor in treating special needs children. Please remember that the founding members of FEAT also have children too old to recieve the "magic $1667.00", they have fought and sacrificed so that others, including my child, can choose effective therapies.
I don't know if the "nazi Germany robots" reference is factual or not. I found many things in that post not to be factual. All I can say is that I am a good and kind person. I would never do anything to harm my children and I run a very successful program with my severely disabled son.
ABA is NOT a cookie cutter program and is designed to adapt to the individual needs of our children. My son has learned, through play, to ride a bike, swim, ask for things (he was completely non-verbal), brush his teeth, go "potty" and so much more.I love him, I love EAP for his progress and I love FEAT for steering me in the right direction.
Give these kids a chance to shine

Debra Antifaev
Ben's Mom

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