[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Deleted User]

Nancy,

Thank you. You understand that I need to investigate and although I may have a minimum of knowledge regarding autism, this is my own process, and I claim that right. As a new member with the "welcome" I have been given I honestly considered excluding myself from the board.

Before this, as you know, I have been more than been willing to help the common purpose.

I have only honestly been looking to help my son. This personal anguish has only been compounded by the hostility I have found in the Autism community regarding "treatment" (not soley on this board but in general).

We are investigating, looking for answers and doing the only thing we KNOW is proven ABA. This alone does not mean that as a mother/father, I cannot have other opinions, thoughts and treatments or investigate regarding such.

Quite frankly, I expected support.

[Nancy Walton]

Hi Everyone,

I just want to add to the latest flurry of posts about "alternative" treatments. It is true, we try to keep the feat message board focused on ABA therapy treatment, because this is the only treatment that has been found to hold up to the test of treatment-group control-group experimentation. That is, a group of children were given ABA(treatment) and another group of children were given special education (control). This is what Lovaas did, and the results were astounding…the treatment group did far better than the control group. THAT is what we mean by SCIENCE.

There is a lot of pseudo-science out there. Parent testimonials, claims, philosophically good ideas. But until there is a control group-treatment group study done on the treatment, it is still "unscientific".

It is our belief, here at featbc, that when a parent gets a diagnosis, they should FIRST find out about ABA therapy as it is the only treatment that has science to back it. Once you have your ABA up and running, then you can look into untested alternatives (and I have done some for my son too). But new parents need to focus on what we KNOW works. There is no time to waste on what might work. That is why featbc keeps discussion focused on ABA. We don't like to muddy the waters. New parents have to stay focused.

HOWEVER, I would like to ask all old-timer featers to please have patience with new-comers. We do not need to insult or belittle. We are all just parents with a common drive to do all we can for our children. Please stick to calmly informing new parents, not offending those who ask questions or get off on a non-feat tanget. It's kind of like giving an informational "no". You don't need to put anger into it.

I love you all,
You are my family,
Nancy Walton

[Alan Campbell]

First off I would like to offer my sincere apologies to the Board Administrator and to offened parents for using the "General Topics Discussion" forum to express my personal opinions. I did not realize that subjects other than ABA were taboo. In future I will use the forum for ABA related material and direct all others to the Autism Society of BC's Discussion Board.

However for any interested parties who would like to further discuss this subject privately. I would like to leave my contact information and speak of it here no more.

alanandcindy@shaw.ca

604-514-4744

Again…………I apologize

Alan

[Avery Raskin]

First of all, as far as I am aware, there is no scientific validation for chelation as a treatment for autism. What scientific data exists for chelation exists as its treatment for heavy metal toxicity. There is some speculation that it is heavy metal poisoning which in some cases either causes or precipitates autism, but that is still speculation at this point. What data exists for chelation as autism therapy comes from those who are selling chelation treatment and are in the form of anecdotal reports, which are not scientific. So our cheerful admin is quite correct in his statement.

Second of all, there is AMPLE evidence of the proven RISKS of chelation therapy. In cases of heavy metal poisoning, chelation is carried out under carefully controlled circumstances to try to minimize these risks, but they still exist. For this very real reason, we all need to be extremely careful about embarking on a trial of this nature. Do you want to use your children as guinea pigs? Filling your child with chemicals which will leach vital trace elements from their system is in no way akin to trying vitamin therapy or glutin and casein free diets (none of which have any scientific validation either, but at least they are relatively benign).

Third of all, the point has been rightly made that regardless of any of this, the FEAT chat board is not the place to be discussing alternate, unproven treatment modalities. FEAT's mandate is data-driven, science-based autism treatment, and nothing else. For the time being, Lovaas-ABA is the only treatment which fits that mandate. If and when the time comes that some other treatment is independently studied, published, peer-reviewed and proven effective, I'm sure FEAT of BC will be happy to welcome discussion and support for said therapy modality. Until such time, it's just beyond the scope of this group.

As Vice-President of the Autism Society of B.C. and chair of the Communications Committee, I invite anyone who wants to discuss and exchange information on alternate therapies to feel free to do so on the ASBC chat board. All that is required for posting privileges is to be a member of the Society, and membership is a simple matter of enrolling and paying the modest membership fees. Please see the web site at http://www.autismbc.ca for more information.

Avery

[J.Graham]

In all due respect to the FEAT Board Admin, the comment made about chelation therapy being a scientifically UNsubstantiated treatment is incorrect. This treatment is indeed scientifically based with much documentation and studies to support it.

In keeping with and respecting the rules of this chat board, yet without leaving any parent high and dry without an avenue to further research these topics most recently discussed – if anyone is in need of anymore info, please feel free to email me.

Jen

magnolias@telus.net

[FEAT BC Admin]

To All Chat Board Members:

Although Dave's words were quite colourful, in fact he is correct. The FEAT Chat Board is set up solely to discuss issues pertaining to Intensive Behavioural Treatment, not scientifically UNsubstantiated treatments such as Chelation Therapy. In addition, the vaccine debate, although important and relevant, is not within the mandate of the Chat Board.

I do strongly suggest that these issues be discussed on the Autism Society of B.C.'s discussion board. It is just as easy to use as the FEAT Chat Board (in fact it is the same software).

For those of you who would like an account, I suggest you give them a call. Their number is: 604-434-0880.

Thank you for respecting the rules of the Chat Board.

admin@featbc.org

[Deleted User]

Hello,

As I stated, my son has just been diagnosed. I have been put through the treatment maze, the blame game and the financal shock.

I am stunned at how closed minded people, doctors, therapists and parents of some Autistic children have been.

I have decided that I would look at everything with an open mind, therapy and causation included.

Personally, after researching I have come to the conclusion that ABA 32+ hours a week will be effective. This though many naysayers have said their is "no proof", "only one study", "it only works on 50% of the kids" and "you can't afford it" etc.

I will be trying chelation and ABA. Further if needed I will run down the street naked singing "God Save The Queen" if there is a chance it will help my son (this time I'll be sober ;).

This was MY decision. I would never criticize a parent for THEIR decision as I realize we only want to help our children.

To talk about the vaccines whether fact or fiction is part of this disease for some people. I refuse to negate the idea.

Questioning everything is the only way we find answers.

If someone had not courageously questioned the recovery of Autistic children, my son would be in an institution.

Shannon

[Deleted User]

Hello,

As I stated, my son has just been diagnosed. I have been put through the treatment maze, the blame game and the financal shock.

I am stunned at how closed minded people, doctors, therapists and parents of some Autistic children have been.

I have decided that I would look at everything with an open mind, therapy and causation included.

Personally, after researching I have come to the conclusion that ABA 32+ hours a week will be effective. This though many naysayers have said their is "no proof", "only one study", "it only works on 50% of the kids" and "you can't afford it" etc.

I will be trying chelation and ABA. Further if needed I will run down the street naked singing "God Save The Queen" if there is a chance it will help my son (this time I'll be sober ;).

This was MY decision. I would never criticize a parent for THEIR decision as I realize we only want to help our children.

To talk about the vaccines whether fact or fiction is part of this disease for some people. I refuse to negate the idea.

Questioning everything is the only way we find answers.

If someone had not courageously questioned the recovery of Autistic children, my son would be in an institution.

Shannon

[Mike & Rachel Goetz]

Dave,
A bit harsh perhaps? Boards like these ("General Topics") will range in topics of discussion and the MMR issue, while not directly related to ABA, is nonetheless quite clearly a topic of interest for several people.

Being that this forum is private and administered by a moderator(?), I would suspect that discussions which get out of hand would be stopped by those with the power to do so.

I believe that chat boards like these are meant, at least in part, to build community and support amongst those who are facing the struggles of dealing with ASD. Squelching discussion doesn't encourage participation.

The bottom line is that you don't have to read it if you're not interested. I'd be happy to discuss this more offline: mike_r_goetz at hotmail dot com

Mike

[David Bridges]

Any chance we could cut down on the MMR-related posts here guys? For most of us this is a non-issue.

This is an ABA site. I don't want to hear any more crap about vaccinations. If I did, I would have signed up with the Church of Scientology message board.

Thanks,

Dave

[Author]

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