[Sabrina Freeman]

Dear CHAT Board members:

I returned recently from a few days away and found a somewhat disturbing, albeit interesting, thread on the Discussion Board – the ASBC/FEAT-BC topic. The discussion started with a reprinted letter, authored by a former employee of the ASBC. It appears to have tapped a rich vein of fear and suspicion out there about FEAT of BC's purportedly draconian, nightmarish agenda for children with autism. The question is: "How did these ridiculous ideas ever see the light of day?" I feel compelled to recap FEAT-BC's mission and also want to take this opportunity to address some of the salient issues raised in the ASBC vs. FEAT of BC discussion board thread.

As most of you probably know, FEAT-BC is an entirely non-profit, wholly volunteer organization that does not ask for, nor receive, any government funding. This is not accidental – it's what makes the group free and independent, by design.

This organization has two primarily goals.

1. Science-based autism treatment must be publicly funded and available for every child with autism whose physician prescribes it and whose parents want their child to benefit from it, regardless of family ability to pay. In other words, FEAT-BC exists to make sure the laudable and revered tenets of the Canada Health Act also apply equally to medically necessary autism treatment, in the same way the Act functions to ensure the funding and provision of universally accessible treatments for physical illnesses across the country.
2. Autism diagnoses must be provided on the same terms as diagnoses for physical illnesses, without artificial, government-generated bottlenecks. This must be done in a timely fashion, ideally at 18 months of age, but earlier as science makes this possible.

These are the central mandates of this organization and the reason it was established. Everything we do is geared to achieve these goals. In contrast to some comments made in this discussion group, it has never been an objective of FEAT-BC to coerce or force a particular treatment protocol upon anyone – nothing could possibly be farther from the truth.

It is well known, unfortunately, that if parents are not dedicated and committed to a treatment protocol, it will likely fail since follow-through is critical. In addition, why would any parent at FEATBC care to waste precious time, taken away from their own families, on people who do not want their children in a science-based treatment program? We are all far too busy. Remember, every FEAT-BC parent volunteer who spends hours on the phone with a new parent does it out of the goodness of their heart, not because they are on a government salary. There IS no government money in this organization and membership cost is zero – there are no barriers to anyone.

In keeping with the mandate, one of our roles is to inform parents about the state-of-the-science and then let parents make their own decision. Contrary to spurious charges leveled against this organization, FEAT censors no one and does not suppress or withhold information; but we DO say that science should be your guide.

How does FEATBC view the role of the ASBC?

FEAT-BC has always kept to its mandate, but this organization was not established to do all the necessary jobs ASBC is set up to do. An autism society needs to advocate for families who need respite and adults with autism who need housing, jobs, vocational training, etc.; it needs to be the clearinghouse of information of ALL sorts and it must be a disinterested, independent advocate for all persons afflicted with this difficult disorder. An autism society should buy relevant books on autism and sponsor conferences, bringing experts from around the world to share the best of current knowledge in the field. There are many other functions an autism society should perform but in short, a healthy, representative and GOVERNMENT-INDEPENDENT Autism Society could do a lot of good for a lot of people in this province.

I feel compelled to mention that the fear mongering coming from some quarters of ASBC for years regarding FEAT-BC, would be laughable if it were not so very troubling. To address this FEAT-BC/ASBC "takeover" issue: for the record, this is not an agenda of this organization and, moreover, FEAT-BC will never merge or somehow become part of ASBC because we never want to be controlled by an organization that receives most of its funding from government (the ASBC is the recipient of over $350,000 per year in government funding, not to mention other government grants that vary from year to year). Think about it. The ASBC describes itself as a resource of the Ministry of Children and Families! (ASBC web site 2000). The vast majority of the ASBC membership is comprised of good and well meaning people but they need to know that the ASBC leadership and executive in recent years have permitted the ASBC to become a de facto arm of government. That is not a healthy situation for genuine advocacy.

Unfortunately, when an organization is reliant upon government for their very survival, they cannot advocate effectively for children with autism. Arguably this is why ASBC felt compelled to help government in its attempt to defeat parents in BC Supreme Court during the Auton Case. Although many ASBC members do not know this, the autism society played an important role in government's attempt to defeat parents! Sometimes truth is stranger than fiction. An example of the "help" they gave government was this: they were instrumental in working on a so-called "remedy" that would EXCLUDE all children age six and over from receiving ABA! We all know this legal remedy government served up in the Auton case – it's called the EIBI pilot project which serves a small number of children with non science-based interventions, leaves children over age five out in the cold, uses government diagnosis as a gatekeeper to enrollment, is being evaluated by the same academics who helped set up the program, etc. Do FEATBC members want to associate with this kind of activity? Absolutely not.

In short, FEAT-BC was born because a government-funded autism group (ASBC) was not doing its job since it is beholden to government for survival. An autism organization should not be primarily concerned about preserving government contracts and jobs. I, and many others, would never volunteer half our waking hours for an organization that is muzzled because it needs government funding and has no qualms about aiding government in a legal battle against children in B.C. Supreme Court. But sadly, this has been the close relationship between ASBC and government. It is difficult to run away from that shameful record of complicity.

FEAT's goal has never been, nor will it be, a "take over" of the ASBC. Who needs to inherit all their problems! FEAT-BC certainly doesn't. Stated for the record, this organization did not stage any takeover, as is being charged by some. This is not the policy of our group.

The Board of the ASBC

It is my understanding that some members of FEATBC are also members of the ASBC. These individuals are also interested in many other areas where the ASBC is involved. These board members are committed to making B.C. a better place for people with autism of all ages, not just children. Nowhere is it written that FEAT-BC members are not allowed to join the ASBC. FEAT-BC is a grassroots organization and its members are obviously free to join any organization they choose. They are free agents, making independent decisions. These ASBC/FEATBC members, some of whom I know personally, are talented, intelligent, honest, hard-working people who have only the best wishes for people with autism. They are not interested in censorship or destruction. They are not "radical elements" or fanatics. To the contrary, they bring talent any organization would be privileged to have. Instead of feelings of paranoia, the alarmed posters to this group should feel fortunate that these talented, energetic people have taken time out of their busy lives to add creativity and intelligent stewardship to the organization.

One thing that I do know about some new members of the ASBC Board is that they would never help government harm children with autism for money. In other words, they will not compromise the best interests of people with autism based on the priorities of the ASBC's government paymasters. Perhaps that is what the fear mongering is all about. The government and disgruntled ASBC members who were instrumental in running the organization during the Auton case know that this new board would never advocate against giving parents of children with autism individualized funding for treatment programs. For those of you receiving $20,000 per year in funding now under the IEII program, you should know that the ASBC was, in fact, against giving money directly to parents through individualized funding programs because they thought you couldn't handle it. They also lobbied against individualized funding because government service providers are against giving money directly to parents because then government funded autism contractors would have to compete in a free and open marketplace! This patronizing, paternalistic view would never be adopted by this new board. It was only FEAT-BC's lobbying – high level exchanges between FEAT and government and the CIAT Brief (https://featbc.org/ciat.pdf) – that managed to convince government to create the new individualized funding program, FEAT-BC's CIAT program in all but name. It was the Autism Society executive working against parents of children with autism that made it so hard to push this through. Government could always point to its own government funded autism organization as the bellwether representative of families' opinions, needs and supposed satisfaction with government work such as MCFD's empty Autism Action Plan, for example. This has made the struggle towards universally funded autism treatment much more difficult.

So, the choice is very simple. If you want to make sure that the ASBC does not work against your child's ABA funding goals and you want to continue to receive individualized funding, you are welcome, as individuals, to join ASBC to ensure they work in this positive direction. There is nothing stopping you, and I encourage you to make a stand and have your voice heard. As the parent of a child with autism in B.C., you have every right to make sure that your children's fundamental rights are heard at the government table. Being a FEAT member should be complementary to ASBC, not adversarial.

Information is Power

FEAT-BC's position has always been to share, not suppress, information. The sharing of information gives each individual parent the power to make good and important decisions for their child's health and well being. On the other hand, tight control over information renders a parent powerless (that is one of the types of power organizations use to control parents of children with autism, but I'll save that discussion for another post). The concept of information as power is why the word "Science" is in our mandate. Science is designed to uncover truths, not hide them. The allegation that FEAT-BC, as an organization, does not tell parents about other autism interventions is ludicrous. In fact, on a regular basis this organization recommends that parents obtain a copy of the New York Report on Best Practices for Autism. The reason: a wide variety of treatments are evaluated in detail by renowned autism experts in terms of the science behind the intervention (or lack thereof). We are providing new parents up-to-date information on treatments and what science has to say about these treatments. In truth, most so-called autism treatments don't have enough science behind them to warrant their use. However, if a parent wants to experiment with their child, that is their business. This group does not exist to prohibit what it is that some parents elect to do to their children. I will not apologize for the fact that FEAT is not prepared to hide the state-of-the-science from new parents. That would be dishonest. If the ASBC really wanted to serve people with autism and their families, they would not hide the state-of-the-science from parents either. They would also recommend, at minimum, the New York Report on Best Practices for Autism. But they don't. Yet we have heard accusations posted to this discussion group that it is FEAT-BC that somehow has an agenda of withholding autism information from parents, when in fact the opposite is true – it is the government funded ASBC that withholds information from its membership.

The truth in all this is that FEAT-BC is all about the exchange of ideas, not censorship of thought. That is why we have the only unmoderated autism discussion board in this province, where ASBC members are free to sign up and share their thoughts (anonymously if they wish) even though some of them are not even involved with ABA programs. Moreover, for the record, it is important to state that FEAT-BC is so committed to the free exchange of ideas that this group agreed to allow a former employee of the ABSC the opportunity to post a very contentious letter to our discussion board. The ASBC did not accord us the same privilege of publishing FEAT-BC's views in their newsletter, despite a formal request. Also, to the best of my knowledge, the ASBC to this date does not run an unmoderated board where their members can exchange information. If anything, it is the ASBC that seems to have the appearance of controlling the free flow of information amongst its membership, not FEAT-BC – quite the opposite of charges leveled by some against FEAT-BC.

This CHAT Board was created and is devoted to discussion of science based ABA treatment issues because that is what our organization is all about. There are many other boards where parents can exchange ideas about all kinds of autism treatments that, as of now, remain unsubstantiated. If you are Internet savvy and on this Chat Board, chances are you have access to all kinds of Internet lists and discussion boards, but it is not the mandate of this group to be concerned with the universe of experimental treatments.

It is important to keep in mind that science is constantly moving forward and the fringe treatments of yesterday may, in fact, become the best practice of today – that is the nature of discovery and paradigm shift. In reality, though, gaps between genuine breakthroughs are wide. That is why it is always important to stay current on the state-of-the-science through legitimate organizations like the National Alliance of Autism Research (NAAR, http://www.naar.org.) Another source of comprehensive information for those for you who want to know about the "good, bad and the ugly" is the Schafer Report, which I recommend to those who are interested in all news related to autism. Go to –> SUBS@doitnow.com

The Schafer Report has the widest circulation amongst autism newsletters and can help you learn about many other sources of information. If some members of this group would like a BC based Chat Board dedicated to alternative, experimental therapies, I encourage you to approach the ASBC to set up its own internet list or discussion board. They certainly have the resources and it is within their mandate to take this on. However, non science-based discussions are not FEATBC's mandate. This is not a matter of tolerance, it is a matter of science, and no, FEATBC will not "bend" the science even a little to accommodate unsubstantiated autism interventions. We believe in peer-reviewed journals, which evaluate autism studies with good experimental designs. We do not believe it is ethical to mislead parents, especially new parents, by offering them the latest, unsubstantiated, "cure de jour."

That said, if your child is suffering from other symptoms, in conjunction with autism e.g., allergies or intestinal irregularities, then it is certainly a good idea to research these issues in keeping with the state-of-the-science. Many other autism-related boards exist to accommodate these topics.

In short, the ASBC and FEATBC should be complementary. It is not FEAT BC's fault that the ASBC long ago stopped doing the job that they were mandated to do. It is not FEAT-BC's fault that ASBC was captured by government, co-opted and hamstrung by MCFD funding so it could no longer advocate for the treatment rights of children. But all this does not mean that FEAT-BC has any designs on "taking over" anyone. I sincerely hope that the ASBC embraces the talented new members on the ASBC board who have much to bring to that organization. Do not alienate them and risk losing the most talented board the ASBC has had since the Honourable Grace McCarthy helped set the ASBC up decades ago.

Sabrina Freeman, Ph.D.
Executive Director, (a 100 percent volunteer position)
FEAT BC

[Sabrina Freeman]

Hi everyone! I just finished watching a news story on the Toronto Global TV affiliate, Pulse 24, and I just have to share it with you.

Norrah Whitney, FEAT of Ontario, has done a marvelous job bringing the plight of our children to the Ontario Government. She organized a protest rally in the Ontario Provincial Legislature with approximately 100 families, with many of their children with autism in tow.

This is a news clip worth watching. If you are interested, please visit:

http://www.pulse24.com/News/Top_Story/20020624-018/page.asp

Be sure to click on "56k" or "high speed" to view the video with Microsoft player.

Great work Norrah!

Sabrina

[Sabrina Freeman]

TO: All FEATBC members with children age 5 and under
RE: New government individualized funding program
******************************************************

Hello everyone,

Here is the latest from Victoria.

The BC Government has just introduced an autism individualized funding program for children age 5 and under, called Interim Early Intensive Intervention (IEII). The program gives parents the right to purchase treatment services privately, with strings attached. I won’t go through details of the entire document – it’s important you all read it yourselves; however, I want to caution regarding potential pitfalls to avoid.

The amount of money is approximately $20,000 per year, per child, which should cover at least 1/3 of your treatment program costs. For those who have read FEAT BC's, “Choices in Autism Treatment brief” (CIAT brief, June 2001, … https://featbc.org/ciat.pdf), much of the new government program will sound quite familiar. Unfortunately, MCFD has modified FEAT’s proposed CIAT program in substantive ways that make it quite difficult for parents to access the treatment dollars – they have set up artificial, unnecessary barriers.

Here are issues with the government program that need to be overcome by parents of younger children in this group:

1. The government program requires a “multi-disciplinary” autism diagnosis. Right now, Sunny Hill has an 8-month waiting list for diagnosis, so any new children are going to be faced with a daunting bureaucratic barrier. Make no mistake, the Sunny Hill bottleneck (unofficially) has been designed to ration autism diagnoses. It has been in place for years, intended to save government money. Now, centralized, government run diagnostic facilities are the gatekeepers for the new IEII. This will delay and make it harder for you to access funds allocated to the new individualized funding program.

2. Parents can only hire service providers on the government “List.” If you are a qualified service provider, please make sure that you are on the list. If you are not, get a Service Provider Self-Referral Form (available from the Autism Society of B.C., Ph. 604-434-0880) and send it in. Parents using service providers who are not on the list should start lobbying heavily to have them added. The Autism Society of B.C. is DEEPLY involved in this latest government program, so give them a call and demand they help you get your service provider on the government list.

I’ve attempted to get a copy of the list … no luck so far. The minute anyone gets a copy, please send it to us so we can distribute to families.

Despite the hurdles, I do believe that this is a significant evolution in the way government’s social services people usually do business.

Important in the flurry of this latest news, I’d like to thank all the FEAT parents who have worked hard, behind the scenes, writing the CIAT brief and – crucially – advocating for and representing the individualized funding program at all levels of government. I know it is far from perfect; however, it is so much better than what our children have had to this point.

Bureaucratic barriers can be dealt with. Anyone with a child on the waiting list for Sunny Hill, please contact me. We can offer a few ideas on how to deal with the waiting list problem.

For parents of children over 6 … please don’t despair, it’s not over yet ;-)

Sabrina Freeman, Ph.D.
Executive Director
FEATBC

_______________________
NOTE: I’ve been told that the information packet is available either through social workers, local Community Living Services offices, or the Autism Society of B.C.

The two documents are called:

– Message to Parents of Children Diagnosed with Autism Spectrum Disorder (May 30, 2002)
– Parent Information Bulletin: Individualized Funding for Children Diagnosed with Autism Spectrum Disorder (May 30, 2002)

If you have any questions regarding this program, I urge you call the Autism Society of B.C., official resource of the Ministry of Child and Family Development, Ph 604-434-0880 or 1-888-437-0880
_______________________

[Sabrina Freeman]

Hi all!

A very interesting e-mail came in that I would like to share with the group since some of you may be affected by this development.

A class action lawsuit was filed May 14 in Ontario regarding the relationship between DPT vaccine and autism. Specifically, a drug company is being sued over the alleged relationship between the mercury content that was in their vaccine at one time and the onset of autism. The Klein-Lyons law firm in Vancouver is organizing this class action.

The representative plaintiff is a child with autism. If you feel your child was injured by the DPT vaccine and subsequently was diagnosed with autism, you may want to contact this law firm for more information. They can be reached at Ph. 604-874-7171.

Sabrina

*Please note: to my knowledge, this DPT related action is unrelated to the ongoing research regarding the MMR vaccine and autism.

[Sabrina Freeman]

My turn.

I’d like to step back from this debate a moment and explain why passions run so high regarding the topic of therapists asking the group for suggestions regarding aggressive behavior. My assumption is that everyone in this discussion group — parents, therapists and consultants — want what is best for children with autism. Yet each of us brings different experiences to the debate. The Chat Board is an excellent forum to exchange those ideas. I encourage those in the debate to not personally attack each other when a topic evokes passion. Rather, listen to the message even if it is delivered strongly.

As a director of FEAT BC, I am aware of countless situations in which children with autism have failed to progress or even lost ground because the person who designed the treatment program is not qualified to do so. This still happens, with even greater frequency than prior to the B.C. Supreme Court win. Although I cannot speak for Avery, I do agree with the substance of his comments; therapists should not be in the business of programming (designing specific components of a Lovaas-style treatment program).

That said, I also understand the very uncomfortable predicament that many therapists find themselves in when an intervention is not working and the consultant is either not available, or is simply unable to correct the problem. Some children pose a particular challenge, even to very competent consultants. I thought the advice of former senior therapists, who are now getting advanced training to become experts in this field, was quite helpful. Particularly valuable is the detailed information on how to communicate to the consultant exactly what is happening prior to, during and after the behaviour. That is advice that I hope all therapists will incorporate in an effort to improve the implementation of the behaviour plans designed by the consultant. Detailed feedback from the therapist to the consultant will significantly increase the chances of successful behavioural intervention.

A word to those who post anonymously. It is your right to post this way if that is the only way you feel comfortable; however, when a parent such as Avery has the courage to post a strong position and sign his name, that should be respected rather than attacked. True, he is passionate about the issue, debating it strongly, but the critique is about the potential action of a therapist, not an attack on the character of a therapist.

Although some members may speak passionately on a given issue, I encourage you to look closely at the message, rather than reject that message simply because it was communicated strongly.

As discussed here before, within the parameters of the chat board rules i.e., no personal attacks, part of what makes us strong as a group is the ability to have a free exchange of ideas even if those messages are not necessarily pleasant to hear. Intimidation is counterproductive to that objective. We don’t all have to agree, but I would hope that we can still engage in lively, respectful debate.

Sabrina

[Sabrina Freeman]

Hi everyone! I just learned that Autism Partnership is giving a one-day workshop on "the basics". I thought I'd share all the information I have with you since I know there are many people on the Chat Board who have never been to an introductory workshop before. Here's the information we were faxed:

***************************************************

An Introduction to Applied Behaviour Analysis and Discrete Trial Teaching.

This one-day workshop will provide the participants with an introduction to the theory of applied behaviour analysis and its application to children with autism. The topics will include:

– Characteristics of autism
– Functions of behaviours
– Development of behaviour plans
– Basics of discrete trial teaching

Presented by Andrea Sharpe, M.Sc., a behavioural consultant with Autism Partnership. Andrea has worked with children and adolescents with autism in Canada, England, and the United States. She is currently based in Vancouver and works with families in British Columbia and Alberta.

Saturday, June 1, 2002, 9 am – 4 pm
South Fraser Child Development Centre
9460 – 140th Street, Surrey

Costs before May 22, 2002:
Family members/ABA tutors: $50 per person
Professionals: $100 per person

After May 22, 2002:
Family members/ABA tutors: $70 per person
Professionals: $120 per person

Please note that places are limited and will not be reserved without receipt of payment.

***************************************************

To register, please contact Autism Partnership:
Phone: 604-632-4249
Fax.: 604-737-1613
#101 – 1001 West Broadway
Box 539
Vancouver, B.C. V6H 1K4.

[Sabrina Freeman]

Upcoming conference that may be of interest:

Increasing the Behavior and Social Functioning of Individuals with Autism

Presented by Dr. Bridget Taylor
Sponsored by Feat of Oregon
CEUs: Washington State Clock Hours, ASHA
OHSU Auditorium
April 20, 2002: registration 8am-9am, workshop 9am-4:30pm.
For more information and registration, contact: (503)282-3328.
http://www.feator.org; email: feator@agora.rdrop.com

[Sabrina Freeman]

Hello everyone,

Just a quick reminder and request that everyone, please, be nice to one another.

I understand there are political issues in BC now that are charged with lots of emotion and divisive along party lines. However, the topic of this board is not a left or right issue.

First, the referendum, albeit important, is obviously "off topic" for this group to debate, so we request that members please end that thread and restrict political discussions to those that are ABA related. Second, please recall that it is inappropriate and against the rules of the discussion board to swear or use words that are hurtful or insulting towards another member of the discussion group. Internet messages are quick and convenient but that speed sometimes means people say things they may not have had they written a "paper" letter that often gets a second or third reading before the envelope is sealed, stamped and mailed.

So, please read your posts over in the "preview" section before clicking the "post this message" button. Take a moment to reflect on the content of the message and the words you have chosen. If anything looks hurtful or insulting to another member, please consider rephrasing the post so it honours the rules.

Thank you all for your cooperation.

Sabrina

[Sabrina Freeman]

Re: Teaching Music using ABA

I would like to offer some comments on the recent post regarding teaching music using ABA. My thoughts are not based on any studies on the subject but are simply based on personal experience with my own child.

I have a great deal of experience using ABA for music with Miki. She loves music and learned everything she knows about it with the help of ABA. She learned to play the piano through imitation exercises and learned how to read music in much the same way one would teach a child with autism to learn the alphabet (flash cards, etc.). We relied heavily on discrete trial training, among other ABA techniques, and to this day Miki uses backward chaining when practicing her piano pieces.

We started with a very open-minded piano teacher who was happy to work with a therapist. The piano teacher soon internalized the techniques and understood how to use behavior plans we had in place. At the beginning it was difficult and at times very trying. For example, my daughter had her own ideas about how a given piece should end, but had to learn and accept that one must play the piece as it is written. Over time, the structure of music helped her excel and she is now very good at it. We have used ABA for every other instrument she has learned since then (and there are six).

Music has also created a socially acceptable leisure activity. When Miki is not playing an instrument, she may be at her i-Mac computer, playing and modifying music tracks on the screen, using an attached piano keyboard, 'MIDI' interface and composition software. In addition, through music she has had structured activities that other children are involved in. Over the years, she has participated in musical groups that play in public. Working on an innate strength, as well as all the autism related deficits, was in retrospect was a very good idea. Music not only established competence amongst peers but also brings happiness.

Some thoughts about when to start: I’d make sure the child has mastered simple imitation skills, is somewhat compliant and seems to enjoy music. In addition, I wouldn’t teach the child to read music until the child has mastered reading (decoding) English, although I’m sure some could debate that point.

Good luck!

Sabrina
(Miki’s mom)

[Sabrina Freeman]

Dear FEATBC members:

Thank you to everyone who contributed to the recent open letter regarding the possibility of therapists potentially misrepresenting themselves as Lovaas-ABA consultants. The recommendation to check references carefully is certainly valuable for parents to consider. We appreciate that the mother who posted the letter took the time to share her concerns with the group. It is important that parents feel free to share their experiences with others who are running programs for their children. This is part of the collective orientation that characterizes a grass roots organization.

At this point, all have had ample opportunity to express their views and we have heard the important issues. It is now time to move on. All posts relating to this topic have been removed from the discussion board. It is my understanding, based on these posts, that the therapists discussed in the thread have assured the group that they have no intention of presenting themselves as consultants, but rather, as two therapists who simply enjoy working together. In view of this, the specific discussion board thread is now closed.

In more general terms, for future posts, consultants who are members of this group may want to address the topic of how therapists can become consultants, as well as what training, credentials and experience parents should look for to determine whether a consultant is appropriately qualified to design and oversee a Lovaas-type ABA program.

Thank you again for everyone’s contribution.

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

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