[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Nancy Walton]

I realize we are all pretty tight for money, but if anyone is considering buying a new camara, I strongly recommend a digital camara. I finally got one after two years of taking photographs and having them printed up, only to find them too dark or not close up enough.

I can now take pictures, edit them on the computer and print them up on regular paper in any size I need. I also just bought a laminator. I know, maybe I'm gadget happy, but I really think I am now much faster at getting pictures for my sons program ready. No more travelling to STaples to have them laminated. No more travelling to the store to drop off film and go back and pick up pictures.

AND the best part, is I can take hundreds of pictures of my son and delete the millions of pictures of him staring off into space and print up the one picture of him smiling into the camara. By the way, I put my pictures on disk and have them printed up by the store when I want good photographs for the album. They are just as good, if not better than pictures takent with a film camara.

Nancy Gadget Walton

[Nenad Ivanovic]

To Lis:

I used to buy "Object Labes" and "Action Labels" flash cards (as many other items for my child's treatment) from Teaching Things. They can be up to ten times cheaper than those you can buy from a "specialized store" and they are just as good.

You can see the Teaching Things web-site at:
http://www.teachingthings.com/
I know of one Teaching Things store at 3831 Still Creek Ave (I hope you live in Vancouver area)

Good luck

Ned (Sophia's father)

[Sara White]

One of the best CD's that I've seen for stimuli is "Picture This!". The pictures are relatively good quality and there are usually multiple pictures of each stimuli (good for generalization). I believe you can get it at Different Roads to Learning, but I'm not 100% sure. It doesn't have absoultely everything, but it probably has 100-150 pictures of objects, verbs, prepositions, shapes, etc.

[Lis Louwrier]

I was wondering if anyone could help me. My son's senior therapist and I are making lots of flashcards for his EOL and ROL programs (various categories and action labels). We have a basic pack of flashcards but they are expensive and cutting pictures out of magazines does not always cover everything. I have been told that there are some CDrom programs one can access to print off more pictures. Does anyone know of any good ones? Any advice and past experience in this area would be much appreciated.

Thanks a bunch
Lis
Ryan's mom (age 3)

[Judy Anderson]

I am a very private person and do not often respond to FEAT posts, even when I have an opinion (so often my opinion is voiced by others much more eloquant than myself – thanks David, Avery, Nancy, Robin, Barbara to name a few), however I believe that sometimes there comes a time to speak out.

My husband and I are the parents of two amazing children, Sarah almost 13 and Ryan 11 1/2. Ryan is Autistic. We began a Lovaas type ABA program for Ryan 8 1/2 years ago when he just turned three. We started with a "green" team and operated our program with an expensive out-of-town consultant for a year and a half. It became obvious that they did not have the experience or knowledge to long distance consult and we dropped them and "self" ran our home program for the next six months (a disaster) until we were able to hire an amazing, qualified and effective individual that we continue to employ. The sole reason we were able to gain access to this individual is Sabrina Freeman and her dear friend and amazing side-kick Jean Lewis. Between these two women (and the equally hard working men behind them) they have roped in a support network for us parents of children with Autism that matches no other. I for one am proud to be associated with it and am ever so grateful that it exists.

FEAT of BC provides us with so many valuable tools that eliminate some of the horrible experiences that some of us have had to experience before FEAT existed. One point worth remembering, no therapy is far far better than bad therapy and no school is better that school with a untrained Aid (Special Education Aid to us in North Van)- from personal experience I will tell you that you can pay for years to come.

This chat site has become a bi-weekly respite for me. I can listen to the stories of others, laugh, cry and feel that I am not alone in my fight to provide my son with the ability to learn from his environment and to become the best he can be. We parents are here to help each other, to support each other. There is no other forum where we will find a group so much on our side. We can use this forum to sharpen our arguments for the cold cruel world outside. We have come together as a group of people brought together by tragedy, let us go forward stronger and united in our desire to do everything that we can for our children. As friends let us agree sometimes and agree to disagree sometimes, but let us always remember why we are here.

On the topic of treatments other that Lovaas type ABA, we looked at a variety of other types of treatment and discussed each of them with Ryans's Pediatrician. His words to us eight years ago have provided us with a meaningful guideline. "Don't stop looking at other forms of treatment to help Ryan. But, first please review them with me to ensure that they are safe (Don't laugh one was actually dangerous). And,second do not let them reduce the time or money that you need to provide a meaningful Lovaas type ABA program for Ryan."

Thank you again Sabrina and Jean for a remarkable job with FEAT and the Auton/Anderson lawsuits. Sabrina you once said to me regarding those people we will come across in the real world in the battle to educate our children "they don't have to like you, they just have to respect you". Well, cheers to you both, I like you and I respect you (bonus) and I am glad you are on my team.

Sincerely,

Judy Anderson

[Sabrina Freeman]

Hello everyone,

Well … the Chat Board certainly has been active lately, including some shots directed right at me. It reminds me of the first time a lawyer for the Attorney General used my name during the Auton case in such a way that it virtually sounded like a swearword! Although I was surprised my name would evoke such passion in a lawyer, there WAS pride in knowing we are effective in what we do for children with autism and are not being ignored. I'm not surprised there is vitriol and animosity in this thread since the topic of autism treatment is a very emotional subject.

Once again, as in my previous clarification post, I would like to address the ideas in the flurry of posts made to the board lately, rather than attack those engaged in throwing the Molotov cocktails.

1. Generic ABA, vs. Lovaas

Unlike the broad discipline of ABA, which uses primarily single-subject case designs, Lovaas took many of the findings from the field of ABA and designed a ‘between-subject ‘design, which employed one experimental and two control groups – this was groundbreaking then and has yet to be matched. In addition, he attempted to use a respectable number of children per condition to test his autism treatment hypotheses. It is Lovaas and colleagues that adhere to the higher standard of experimental design in order to see whether the protocol ameliorates the symptoms of autism. The results of Lovaas' study and subsequent studies done by other researchers utilizing Lovaas' protocol indicate that children in the ‘experimental’ group progressed significantly more than those in the ‘control’ groups. The children's progress was not from ABA focal treatments, which is common in ABA research, but rather from a particular protocol (the Lovaas brand) that utilizes a unique collection of ABA focal treatments to remarkable effect in the amelioration of autism.

Other researchers doing ABA have yet to design a ‘between-subject’ study testing their autism treatment protocol. That kind of research I would truly welcome. This is the way we see progress in science. but it’s expensive, difficult research to do. In the meantime, new parents need to make informed choices about which protocol to use, after understanding the science behind each autism treatment protocol. This is why we speak frequently about the ‘Lovaas’ treatment protocol.

Many people use the convenient shorthand term of "Lovaas method", "Lovaas-type ABA", "Lovaas Autism Treatment" or "Lovaas ABA-DTT.” What they are all referring to is the behavioral treatment method pioneered by Lovaas and colleagues that came out of the Young Autism Project labs at UCLA — tested and published in 1987. We are certainly not going to apologize for the fact that parents in this discussion forum have elected to use the autism treatment method underlying Lovaas’ remarkable 1987 research results and the numerous subsequent replications.

To muddy the waters by not differentiating between treatment protocols would be dishonest to new parents. Part of FEAT BC's organizational culture is to not hold back from the truth even if it may be unpleasant to some. In short, the role of FEAT BC Executive Director (an entirely 100% volunteer position) is not a popularity contest. It is to steward an organization along a mission that is not diluted by fuzzy thinking. New parents have a tough enough time figuring out what to do without adding confusion to what is so very, very clear. The behavioral treatment method pioneered by Lovaas and colleagues still has the most science supporting it, despite the passing of sixteen years since the landmark 1987 study.

2. FEATBC vs. other FEAT's in North America

I cannot speak for other FEATs in North America who may have diluted their message due to a lack of understanding of science, or due to a lack of understanding regarding the disservice they do for new parents when they "bend" a little on the science; however, I know that there are many FEAT organizations that DO share our commitment to science. FEAT organizations are all completely independent and therefore, create different organizational cultures. There is an important point to keep in mind: parents involved in FEAT BC are the only group of parents that have successfully pursued landmark lawsuits — B.C. Supreme Court, the B.C. Court of Appeal and soon the Supreme Court of Canada in March 2004. Part of the reason that this group of families has been so successful is that they have focused in like a laser beam on the science of autism treatment, understanding that only the treatment with substantial scientific evidence will win the day in a public health care system.

3. The Purported Oversized Ego of the Executive Director

I find this accusation somewhat amusing, but I will address this point seriously.

I've yet to understand how there is purported status and power conferred upon a position that is 100 percent volunteer. In terms of power, if the role of Executive Director came along with any meaningful power, then we wouldn't have to sue government. Senior bureaucrats in Victoria would simply Helli-Jet over to ‘do lunch’ with FEAT and get on with the business at hand – but their dialing finger has been broken since 1996, ergo the courts as last resort. So, I can't say that there is any power that goes along with an essentially thankless job that takes time away from family and SIGNIFICANT professional opportunity cost attached. However, it is a job that I embrace with enthusiasm because it’s important and the right thing to do; we’re changing the landscape in Canada for generations of children with autism. This is a moral imperative. No ego, no power, no bucks. Just something called justice.

4. Credentials after one's name

Nancy Walton did a wonderfully succinct job of addressing this issue; therefore, I would ask anyone interested to review her eloquent post. Post on the topic of letters after one’s name.

5. What are Sabrina Freeman's credentials anyway, and what does the Ph.D. stand for?

I generally do not speak about my academic background and myself because it is unseemly and frankly irrelevant. However, since my background has been introduced in the forum debate, I will elaborate.

I have a Ph.D. (Doctor of Philosophy) in Sociology from Stanford University. My areas of specialization are "Social Psychology/Small Groups Research" and "Organizations" from the field of Sociology. Sociological Social Psychologists create theories and theoretical research programs and then go about testing these theories and research programs to move the field forward. Their research is tested using the experimental method since only through experiments can causal relationships be determined.

In the course of my work I've designed experiments for new research in the university lab as well as taught classes on the experimental method to Sociology majors. I won't bore everyone with more details; however, what I bring "to the party" at FEAT BC is a thorough grounding in science and experimental design – meaningful in the expert versus expert slugfest of court. This is why I am so careful to not "bend" the science for autism treatment. Unfortunately, the field of autism research is replete with those who do bad science, or prematurely introduce a treatment into the field before it has been rigorously tested. That’s the surest way to lose these autism wars, which is not what this noble enterprise is about.

I've always adhered to the precept that bad data is worse than no data since it carries with it the danger of people making very harmful decisions based on lousy input. When it comes to disabled children, this is especially dangerous.

To sum up, I have always believed that parents need to make informed choices. Clearly the debate swirling around the science of autism treatment needs to be better addressed. To this end, I will be offering a lecture to parents — free of charge — on the scientific method and how it relates to autism treatment so parents can protect themselves and their children. It’s important that everyone become an informed consumer to make the right decisions for their child. This lecture will not be about one treatment vs. another. It will be about experimental design in general and how this relates to your child. The lecture will be ready in about two 2 months — I will update the group when the lecture date and room are confirmed.

Sincerely,

Sabrina Freeman, Ph.D.,
Executive Director
FEAT BC

[Nancy Walton]

It's me again

While some other person had exception to Joyces letters, that was not what feat had problems with. Feat simply does not want people to advertise their services.

Feel free to put your letters after your name if you want. Just don't advertise pay-for-service.

Nancy Walton BSc, BEd, MA

[Nancy Walton]

PS

I receive both ASBC chat and feat chat postings. Just want to be clear that I don't prefer one over the other. They just have two different uses.

[Nancy Walton]

To anon Sun 1:14 am

I was trying to make a quick a post but ended up going into a long explanation. So for the short answer, just skip to the bottom.

The feat board is to discuss science-based treatment. Definition of science-based is peer reviewed large group studies (comparing results with a control group).

The reason feat has done this, is because when parents get a new diagnosis, we feel it is important that they hear about what treatment has been proven effective. When I first went to ASBC ( 3 years ago ), I asked them what I should do and they showed me a miriad of treatments and it was up to me to try to sift through and figure out what was best. People at the ASBC office were trying to convince me to do Sensory Integration because they "thought" it was good. They had no science to back these thoughts. When I talked to feat people, they didn't tell me what they "thought" was good, they just showed me research and I decided that Lovaas protocol was the only treatment backed by research not opinion.

Feat is open to any other treatment that is proven to be effective through a science based study (and not just a case study). The feat admin regularly review research that has been done and I am sure that if you were to put on the chat "has anyone heard of blah blah therapy" the administration would look up the research on blah blah to see if it is a new, effective therapy. Feat admin has looked into fluency and has not found sufficient evidence to warrent swaying parents towards using it. Therefor, they do not appreciate parents opinions on it since opinions can be misleading. This is NOT an "OPINIONS" based chat board.

If a parent choses to use a treatment that is experimental (though may have merits), that is fine, but please don't mislead parents into thinking this is a scientifically proven treatment. Please use the ASBC chat board to tout your "discovered" treatment, not the feat board.

IN SHORT

ASBC: chat about anything

featbc: chat about science based autism treatment

Nancy Walton (stickiing with Lovaas, which has been individualized for my son and is working great)

[Deleted User]

Sabrina, Thanks for pointing out the reason certification can be good. Poor practitioners can have certification revoked. I don't understand why you feel that the certification process in place now and advocated by FEAT members across North America is inadequate to qualify the Lovaas ABA consultants that are already certified (and their organizations Directors) operating within our province today. If a family was to complain to the certification board there would be an investigation and ultimately the certification can be revoked if ethical conduct governing Certified Behavior Analysts was violated. What can be better for the parent consumer?
There is no such thing as 'Generic' Board certification. Working outside ones area of competence is contrary to the ethical conduct governing Certified Behavior Analysts and as such would lead to having certification revoked. That is why there are no Certified Behavior Analysts who didn't specialize in autism treatment taking on clients in this province or any other area. The only autism treatment consultants out there who are incompetent of delivering quality ABA are definitely not certified. Thus we are more likely to be invaded by space aliens than Board Certified Behavior Analysts that specialize in self injurious behavior or animal training trying to sell their services to our kids.
As for fluency I never brought it up here and haven't discussed it, everyone else did. My only mention of the word was a direct qoute of what you said. I was talking about certification and i also tried to clarify the omnipresent theme that appears here from time to time that ABA isn't effective science based treatment for children with autism without Ivar Lovaas's name stamped all over it. I think every Lovaas ABA consultant operating in BC uses at least some components within their clients programs that would never be advocated by Lovaas and certainly aren't found in his publications. I am not saying that Lovaas ABA isn't good, its great, in fact I paid for it for my own child. I cannot tolerate people stating that any other ABA protocol or technique but Lovaas is 'snake oil' though because that is a blatant untruth. In the end what makes autism treatment effective is the quality of the ongoing behavior analysis behind the treatment plan and the training and proficiency of the childs team in implementing the treatment plan as it relates to his/her specific individual needs.
I thank you for the privilege to post, and appreciate the support you have given our family and child and so many others. I do however agree with you that on some things we disagree.

Alex Barclay

[Author]

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