[Sabrina Freeman]

RE: upcoming autism court case in B.C. Court of Appeal
************************************************************************************

As many of you know, the B.C. Government’s appeal of the BC Supreme Court ‘Auton decision’ is slated for February 20th and 21st, as is the families’ cross-appeal of the ‘remedy ruling’ in Auton et al. vs. the Government of BC.

I encourage all interested members of FEAT BC to attend the two-day proceedings. Whether you are a family with an older child or a family new to autism, I am certain you will find the court proceeding fascinating. Those who choose to attend the hearings will have the privilege of a ‘front row seat’ to the history of autism treatment rights in the making.

I especially encourage new families to come and watch the B.C. Court of Appeal hearings. These proceedings are a unique way to gain a full understand of how the B.C. government views autism treatment, and how the legal process works for our disabled children — this is truly a rare and special opportunity.

Here is detailed information for all those who would like to watch the autism treatment Court of Appeal proceedings.

1) Court dates and times: February 20th and 21st, 2002.

2) The B.C. Court of Appeal proceedings will take place in the Appeal Court section of the Vancouver Law Courts: 800 Smithe St., Vancouver. Parking is available underground.

3) The Court is in session from 10:00 AM –> 12:30 PM and 2:00 PM –> 4:00 PM.

Everyone should arrive by 9:45 AM to allow enough time to settle in — it is very important that everyone is seated and quiet by precisely 10:00 am when the Judges enter.

4) For those of you attending the proceedings, there are a few important court rules we need to keep in mind:

– tape recorders, CELL PHONES and pagers are not permitted in the courtroom.
– jeans are not permitted in the courtroom
– no comments, moans or groans are permitted. The judges may ask a person to leave the courtroom for these reasons. Government lawyer comments may occur in the court room that you may vehemently disagree with. However, it’s very important for everyone in the courtroom to stay calm and in control.

5) From my understanding, most of the first day will be devoted to government lawyers arguing their case. Most of the second day will be assigned to lawyers representing our families.

Children with autism receiving Lovaas Treatment are about to have their day in the BC Court of Appeal. I am certain many of you have been looking forward to these legal proceedings … I very much look forward to seeing you all in the courtroom in support of this very important cause!

Sabrina

[Sabrina Freeman]

To all FEATBC members,

I am compelled to issue a statement, on behalf of FEAT BC, regarding the February 2 conference sponsored by the Early Autism Project (EAP).

I found data presented by Dr. Sallows regarding children in the Lovaas replication study to be very exciting. Particularly striking is the juxtaposition of progress made by ‘treated’ children and children receiving only ‘generic’ special education from their local, public school system. Not surprisingly, the difference between these two groups of children is very large. Significantly, the school-based program for autism intervention ADVERSELY affected children afflicted with autism. FEAT BC applauds this very important autism treatment research work.

The second speaker at the EAP conference spoke about her experience with ABA and an assorted variety of the latest, so-called autism "treatments" (topical amongst groups unconcerned with science). A word of caution to those who are new to the world of autism: with the exception of the second speaker’s reference to Dr. Wakefield's vaccine study, to my knowledge there is NO data available to support any claims made by the second speaker at the conference that have been published in any peer-reviewed, scientific journals. This lack of science is extremely problematic!

I strongly recommend and urge parents who attended the EAP conference who may be thinking of experimenting with these fringe, unsubstantiated treatments, to please do the following:

1. Obtain a copy of the New York State Department of Health Clinical Practice Guidelines report. The report can be purchased locally from Kids Tools, Ph. 604-924-5437. The New York Department of Health publication on autism treatment is the definitive report on the state of the science for autism treatments.

2. Before anyone contemplates experimenting on their child, please make an effort to find even ONE peer-reviewed journal article supporting any of the so-called treatments presented by the second speaker at the conference; find validated, science based evidence that the treatment, in fact, has been shown to improve Autism Spectrum Disorder.

On behalf of the FEAT BC membership, I would like to thank EAP for organizing this valuable conference that contained so much important information. However, it is nevertheless necessary to stress that FEAT BC does not endorse, or in any way support, the position taken by the second speaker at the EAP conference.

Thank you.

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

[Sabrina Freeman]

Hi all.

I wanted to let everyone know that the conference sponsored by the Early Autism Project still has a few spaces available.

The folks at EAP have told us that any leftover moneys from the conference are going to fund an EAP Parent Resource Library and a Toy Library.

For information on the conference, please contact EAP at (604)473-5011 or visit the conference web site at http://www.wiautism.com/weap.htm

Sabrina

[Sabrina Freeman]

ANNOUNCEMENT: Upcoming talks, conferences etc…
**************************************************************

Hi all!

Here is a calendar of events for the next couple months. Note that three of the events are scheduled for B.C., two in the Lower Mainland.

In B.C.

– January 16, 2002 – West Vancouver

FEAT BC parent-group talk, presented by Rachel Russell, M.A., at St. Frances in the Woods Church, 7:30 PM. For a map, please go to http://www.featbc.org/downloads/map.pdf

Therapists are welcome to attend.

– January 26, 2002 – Nanaimo
Behavioral Therapist Workshop in Nanaimo presented by Rachell Russell, M.A., at Malaspino College, 9:00 am to 4:00 pm. For a registration form and map, please go to http://www.featbc.org/downloads/abtw.pdf

– February 2, 2002 – North Vancouver

“Early Autism Project Explores Research and Treatment Approaches”. Glen Sallows, Ph.D., Lynn Hamilton, Tamara Kasper MS/CCC-SLP. For more information, please contact Paul Skoglind, Director of Administration, Ph. 604-473-5011

In the U.S.

– January 18-19, 2002 – Newtown, PA, USA

Dynamic 2-Day Conference for Parents & Professionals
“Language & Behavioral Strategies for Teaching Children with Autism”, Bridget Taylor, Psy.D., Ed Fenske, M.A.T., Ed.S., Joanne Gerenser, M.A. CCC-SLP, Randy Horowitz, M.S. ed., Christina Burke, M.A., Dr. Lynn Breena, Richard Kubina, Ph.D. For more info, contact: 215-598-8237, AJFoundation1@aol.com

– February 7-8, 2002, April 22-23, 2002 or June 3-4, 2002 – Princeton, New Jersey

Eden Institute Presents Professional Training in Behavioral Teaching Strategies
Topics include: Overview of Autism, Teaching Techniques, Communication, Curriculum, IEP Development and more…
Contact: info@edenservices.com or Ph. (609)987-0099

We are certainly very fortunate to have a growing base of local autism treatment expertise to organize quality conferences; BC is finally coming of age!

Sabrina

[Sabrina Freeman]

The Canadian Legal Network for Children with Special Needs has a new telephone number: Ph 604-899-0543, Toll Free 1-866-899-0543. Their updated Brochure is at https://featbc.org/legalnetwork.pdf

Below is a repost of the announcement for this very important national legal organization for children with special needs.

*********** REPOST ***********

NEW LEGAL ORGANIZATION FOR SPECIAL NEEDS CHILDREN
_________________________________________________________

To all FEAT BC discussion board members:

I have some very important and exciting news! A new, national legal organization has just been established across Canada that is very important to the best interests of our children as well as all children with other special needs. This organization is “The Canadian Legal Network for Children with Special Needs”.

The non-profit society is a group of concerned lawyers working together to advance the rights of children with special needs and enhancing the legal remedies available to special needs children. The society accomplishes these goals through promoting quality legal representation and excellence in advocacy, promoting implementation and enforcement of the UN Convention for the Rights of the Child, and encouraging lawyers and lay advocates to increase their involvement and representation on behalf of children with special needs.

In other words, The Canadian Legal Network for Children with Special Needs is an organization that will “level the playing field” and make it much easier for parents to find capable legal representation that is up to the task of challenging the formidable resources of government, whether it be a school district or a provincial ministry of education or health; the Legal Network is designed to further the rights of special needs children at all levels. It’s noteworthy that the Constitution of the Canadian Legal Network for Children with Special Needs does not permit affiliation for lawyers who are employed by, or under contract to, government.

I could go on and on about the tremendous promise this new organization holds out. Instead, you can download a brochure, which describes their mandate in more detail.

Click here for brochure –> https://featbc.org/legalnetwork.pdf

Since Canadian provinces have their own jurisdiction over health care and education, each province will eventually have its own affiliate of this new national organization. Initially, The Canadian Legal Network for Children with Special Needs is setting up its B.C. organization because lawyers establishing the organization are based in B.C.; however, there already several lawyers across the country working on special needs cases who shortly will organize their respective provinces. FEAT BC is proud to be the charter member of The Canadian Legal Network and we encourage all members of this discussion group to become members of the network either as individuals, corporate or organizational members. We strongly urge all FEAT’s across the country to step up to the plate and support this vitally important special needs legal organization.

Many of you over the years have asked how you can help the cause. This is a historic; watershed opportunity to contribute to the welfare of every special needs child in B.C. and across Canada. By becoming a member and encouraging everyone who cares about your child to become a member, you will help lay the foundation for an organization that will, at long last, hold all levels of government accountable for special needs policies that work against the best interests of our children’s health, education and well being.

Address information:
The Canadian Legal Network for Children with Special Needs
114 – 990 Beach Avenue
Vancouver, B.C. V6Z 2N9
Ph. 604-899-0543
Toll Free: 1-866-899-0543

[Sabrina Freeman]

A correction to yesterday’s post regarding The Canadian Legal Network for Children with Special Needs: the telephone number is Ph. 604-689-8501

Their brochure is now available for download in Acrobat PDF format.

Click here to download brochure –> https://featbc.org/legalnetwork.pdf

[Sabrina Freeman]

NEW LEGAL ORGANIZATION FOR SPECIAL NEEDS CHILDREN
_________________________________________________________

To all FEAT BC discussion board members:

I have some very important and exciting news! A new national legal organization has just been established across Canada that is very important to the best interests of our children as well as all children with other special needs. This organization is “The Canadian Legal Network for Children with Special Needs”.

The non-profit society is a group of concerned lawyers working together to advance the rights of children with special needs and to enhance the legal remedies available to special needs children. The society accomplishes these goals through promoting quality legal representation and excellence in advocacy, promoting implementation and enforcement of the UN Convention for the Rights of the Child, and encouraging lawyers and lay advocates to increase their involvement and representation on behalf of children with special needs.

In other words, The Canadian Legal Network for Children with Special Needs is an organization that will “level the playing field” and make it much easier for parents to find capable legal representation that is up to the task of challenging the formidable resources of government, whether it be a school district or a provincial ministry of education or health; the Legal Network is designed to further the rights of special needs children at all levels. It’s noteworthy that the Constitution of the Canadian Legal Network for Children with Special Needs does not permit affiliation for lawyers who are employed by, or under contract to, government.

I could go on and on about the tremendous promise this new organization holds out. Instead, you can download the brochure which describes their mandate in more detail.

Click here for brochure –> https://featbc.org/legalnetwork.jpg

Since Canadian provinces have their own jurisdiction over health care and education, each province will eventually have its own affiliate of this new national organization. Initially, The Canadian Legal Network for Children with Special Needs is setting up its B.C. organization because lawyers establishing the organization are based in B.C.; however, there already several lawyers across the country working on special needs cases who shortly will organize their respective provinces. FEAT BC is proud to be the charter member of The Canadian Legal Network and we encourage all members of this discussion group to become members of the network either as individuals, corporate or organizational members. We strongly urge all FEAT’s across the country to step up to the plate and support this vitally important special needs legal organization.

Many of you over the years have asked how you can help the cause. This is a historic; watershed opportunity to contribute to the welfare of every special needs child in B.C. and across Canada. By becoming a member and encouraging everyone who cares about your child to become a member, you will help lay the foundation for an organization that will, at long last, help families hold all levels of government accountable for special needs policies that work against the best interests of our children’s well being.

Address information:
The Canadian Legal Network for Children with Special Needs
114 – 990 Beach Avenue
Vancouver, B.C. V6Z 2N9
Ph. 604-689-8501

[Sabrina Freeman]

A quick reminder note about the FEAT BC parent group meeting on Wednesday, November 21.

-> 7:30PM at St. Francis in the Woods in West Vancouver. A map is available on the web at https://featbc.org/downloads/map.pdf

New parents are welcome — please pass on the information.

[Sabrina Freeman]

Hello Everyone,

I’d like to respond to the post Stephen made regarding “Options”. Before I discuss Options in general, it’s important to discuss comments Stephen made regarding “Scientific Proof”.

SCIENCE

Science is theory driven … someone comes up with a theory about the way things interrelate. They suggest a causal relationship between variables such as, in this case, autism and the amelioration of autism through the use of certain principles which have been developed into a particular treatment. Then, bona fide scientists go about trying to test their theory by designing and running experiments. Each time an experiment provides data to support their theory (via support for the hypothesis derived from the theory), the validation is termed an “instantiation” of the theory. This is simply an instance where the theory is supported by a piece of evidence. The more instances support a theory, the more evidence we have the theory is sound. By way of example, the “law” of gravity is actually not a law at all but a theory. We commonly refer to it as a law because every time it’s tested, the theory is supported. So, if one drops a pencil, it falls to the floor and the theory of gravity is again supported. We are so confident in the theory of gravity, that it’s now called a law. In fact, however, we still have no PROOF that gravity exists, but we have a vast amount of evidence to support the theory.

In short, one does not “prove” theories are correct, one must provide adequate “evidence” to support the theory. The more evidence collected, the more confident we are the theory is correct. If we have an instance where the theory is not supported, then we have to explain why this occurred. In other words, the theory must be able to explain the “instance” in which it was not supported so we can still have confidence the theory is correct. Otherwise, the theory must be modified to accommodate the failed instantiation. This is the process by which a theory is refined.

SCIENCE, AUTISM AND LOVAAS

And now, back to autism.

It is generally recognized that Lovaas is a very good scientist. He designed an experiment to test a hypothesis regarding his treatment method for autism. Lovaas used a ‘between-subjects’ design, also utilizing ‘within-subject’ measures. This was, and remains, the best way to see if indeed a hypothesis is supported or must be rejected — it is a very well designed experimental approach. Lovaas’s hypothesis was supported by his first experiment and by subsequent experiments.

IMPORTANT … ‘47 percent recovery’: the hypothesis Lovaas tests is unrelated to percentage of children who became “indistinguishable” from their peers, as impressive as those numbers may be. The Lovaas hypothesis has to do with whether ‘Group A’ (the 40 hour a week group) benefited more than ‘Group B’ (the first control group) or ‘Group C’ (the second control group). Since that time, not only have there been other ‘between subject’ designs (experiments where two groups of children are matched) but there have been at least several hundred individual children who have gone through this treatment protocol with baseline data and follow-up –tantamount to a ‘within-subject’ experimental design, conducted across a large number of children.

Every time a child improves using the Lovaas protocol, this is another “instantiation” of the theory … Lovaas’s claim that his treatment protocol is effective in the treatment of autism. There are quite a few studies published showing the efficacy of the treatment. There are many, many more unpublished instances (with data to show improvement) where this treatment protocol has also been very effective. In fact, the improvement of children with autism in ABA programs is so common place, it’s unlikely a combined ‘single-subject’, ‘within-subjects’ Lovaas design would be accepted for publication at this point.

REPRODUCTION OF LAB RESULTS IN THE REAL WORLD

I’ve always been puzzled by the irony in this argument since it basically says Lovaas and colleagues did such a good job treating autism in the lab that it would be impossible to get exactly the same results in the ‘real world’. In other words, a good researcher’s work is actually criticized here for its rigor. This logic is unfortunate and clearly inappropriate. If one fixates on a specific percentage of recovery, this misses the point entirely. Remember, Lovaas’s theory is not about 47% rate of recovery; the theory centers on whether a treatment protocol significantly AMELIORATES a previously INTRACTABLE disorder. The 47% recovery rate was simply one instantiation of the theory.

An autism study was done by Sheinkopf and Siegal (1998) in which children were in treatment programs unaffiliated with UCLA or any of the Lovaas replication sites. These parents were using a workshop model with a variety of providers, some without appropriate oversight. In addition, most of the children in the study did not have more than approximately 20 hours. Even with this sloppy situation, children showed marked gains, although not anywhere close to Lovaas’ results or those of WEAP. What the Sheinkopf and Siegel study does show is that the Lovaas protocol is VERY robust, and it supports the argument that with appropriate oversight of the treatment program, treatment outcome can be much improved.

In short, the concept that Lovaas’ experiment was so rigorous that it can’t be done in the real world is an argument that really doesn’t hold up when one looks at the data, particularly when we now have a clinic in town!

THE FALLACIOUS CLAIM THAT 25% NORMALIZATION IS ‘COMMON’ IN AUTISM, REGARDLESS OF TYPE OF THERAPY EMPLOYED

My first reaction to this outrageous contention is, “please, show me the data!” In the available literature, the ‘normalization’ rate in absence of autism treatment is a mere 1 in 64. Even this low number may be overstated since rigorous data has not been collected.

We very much need to address the following question:

How can a purported 25% normalization rate occur under ‘other’ therapies if,

a) proponents do not take good baseline data and follow up data, and,

b) they don’t take data during the therapy?

We would all LOVE to see scientifically sound 25% normalization data across the field of autism treatments … but we’re still waiting.

THE NEW YORK REPORT VS. STANLEY GREENSPAN’S PURPORTED BEST-PRACTICES

The New York Department of Health autism report used the ‘gold standard’ of methodology to evaluate data on autism treatment efficacy. This gold standard is developed by the Agency for Health Care Policy and Research (AHCPR), part of the U.S. Federal Government. Greenspan’s ‘best practices’ journal does not use any scientifically rigorous, objective review protocol even resembling the AHCPR.

At this point, it is certainly unethical to put children with autism into a ‘control group’ for Lovaas treatment studies (a study group that does not receive the treatment vs. a group that does). This ethical consideration is why randomized assignment is no longer impossible. However, that said, there are still ways to do studies that look at comparative efficacy of treatments. For example, all children whose parents have chosen ‘Options’ could be matched with children whose parents have chosen ‘Lovaas.’ Baseline measures and periodic measures could be taken throughout the study and at the end of the day, we would have more knowledge on the relative efficacy of these two therapies. In fact, I heard Lovaas challenged Greenspan to just this type of study at a conference they both attended … second-hand knowledge, the stuff of urban legend :-)

OPTIONS THERAPY

After reading Stephen’s post, I have to say I have never heard ‘Options’ therapy described as a form of behaviourism. If this indeed is correct, then why do the Options people not take data to support the claim? Even a ‘within subjects’ design would be better than nothing. If the Options protocol is behavioural, then taking data should not pose a problem.

“No Data, But Believe in Us, We’re For Real”

Everyone should be leary of ‘experts’ who say “believe me, my autism treatment method works because I have letters after my name”. This is my feeling about those who supply unsubstantiated treatments.

I would never want FEAT BC members to believe Lovaas-ABA is the way to go simply because someone with credentials, like Lovaas for example, says so. In fact, the opposite is true. It would be disturbing if people were to make important decisions on their child’s future based simply on what “people” say. Members of this group are intelligent and can read the research data. The point here is that anecdotes can be harmful, even if they come from experts with letters after their name.

PERSONAL DECISIONS

I believe deeply that a parent must do what they believe is best for their child. However, that said, Stephen mentioned that his child did not benefit as much from an ABA program as compared to his current program. At face value, this would appear to be an instance where Lovaas’s hypothesis was not supported. A ‘good’ scientist would need to examine all the variables in this case to arrive at an explanation that accounts for the negative result. There may be many variables to account for this result. Since I do not know all the particulars about this specific treatment program, it would simply be conjecture on my part to suggest possible variables that were interfering with effective treatment. So, it’s important to stress comments here are of a general nature and do not apply specifically to Stephen’s child.

If a parent is looking at the child’s program data and finds no improvement, there are several variables that should be examined carefully. These include the following examples:

1) The quality of the ABA consultant
2) The quality of the treatment team
3) The amount of consultant supervision
4) The amount of parent ‘follow through’
5) Whether the “too-many-cooks-spoil-the-broth” phenomenon is at play
6) Medications interfering with learning
7) Number of times programs have been modified
8) Any critical learning stages “skipped” by the consultant or team?

We could go on and on with possible program flaws to explain the failure of treatment, or more accurately, failure in the implementation of the Lovaas treatment protocol.

There is new evidence to indicate that when implemented properly, the protocol is very powerful. The Smith et al. (1998) study demonstrates in compelling fashion that even the most challenged children improve significantly with the Lovaas protocol relative to control group. The gains are not as astounding as the 1987 Lovaas study; however, the Smith et al. children made considerable gains in view of the fact that not only were they autistic, but also severely Mentally Retarded. So, if even these severly challenged children can advance with the Lovaas protocol, it is indeed a very robust treatment method.

HAPPY CHILDREN WHO ARE ALLOWED TO SELF-STIM CONSTANTLY

My next comment has less to do with science and more to do with a world view which differs considerably from those parents who choose to permit unchallenged self-stimulatory behaviour in their children.

Self-stimulatory behaviour may seem to make a child “happy”, but it also serves to block out the world from the child. If no demands are placed upon a child — a license to ‘self-stim’ — that child’s life may become very small as an adult. The real world is ruthless when it comes to acceptance of differences and that child, as a self-stimulatory adult, will likely be condemned to a life of group homes with much free-time to ‘self-stim’.

A competing philosophy that espouses autistic disorder as being “Part of our world, not a world apart”, is in fact a belief system that says this society should accept strange, erratic people; this is a pipe dream – it’s not going to happen. Our society is sadly only good at giving high-level lip service to “caring” about, and “including” disabled children and adults. There are volumes of pretty words on paper, but parents come up against the ugly reality every day.

Truth is that without pushing our kids to learn control over self-stimulatory behaviour, they will most assuredly be marginalized in society and will likely have little opportunity to learn skills they need to hold down a job … they will probably never find meaningful employment and may be dependent upon others for a lifetime.

Greenspan may not place demands on the child, and may not care if the child engages in self-stim. That child may look happy (in the short term), but in the long run the child will likely not learn the necessary skills to succeed in and enjoy the larger world, with all the opportunities the real world offers.

Simply because a child may not be ‘normalized’ doesn’t mean that autistic child should be deprived of opportunities to be the best they can be. By allowing unbridled self-stimulatory behaviour, the child is sold short … big time!

Regards,

Sabrina
(Miki’s mom)

[Sabrina Freeman]

I’d like to respond to the ‘Options’ thread by first apologizing that I didn’t come on immediately and remind everyone that this is an ABA discussion board and not a board designed to debate all unsubstantiated, so-called autism treatments peddled by innumerable service providers.

That said, as subscribers to the ethos of ‘freedom of speech’, we will maintain the ‘Options’ thread for 72 hours.

By Thursday (11/07/01), the ‘Options’ thread will be closed and we will go back to discussing ABA and related topics. I urge anyone with a contribution to the ‘Options’ thread to please share thoughts with the group over the next three days. I will also visit this issue again in an upcoming post.

For those who would like to discuss non-ABA treatments after this thread is closed, please visit other venues such as the St. John’s list (to subscribe, please send an email to: listserv@MAELSTROM.STJOHNS.EDU)

Thank you.

Sabrina
(Miki’s mom)

[Author]

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