[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Todd Dea]

Roxanne,

"I have been advised that the Autism Society chat board is the place to discuss other forms of treatment such as biomedical. Why not use that resourse instead of fighting each other on this chat board."

>> Who has been looking to discuss biomedical therapy here ? I haven't heard anyone asking about any specific bio-medical intervention questions on this forum have you ?

For those that did actually want to chat about it though, the ASBC chat board would be a wonderful idea if it wasn't such a graveyard over there. Have you checked it out lately ? The only people posting are administrators. Anyone looking for information on biomedical therapies certainly isn't going to find it on that forum.

"I know many great families who do ABA AND biomedical treatment. It's your right as a parent to do what is best for your child and only you can decide on that!"

>> Know any of them that didn't waste a year of their child's "recovery" time before they found out about it on there own ? Don't you think the time has long since come that every parent receiving a diagnosis here in B.C., should immediately receive information about both behavioral AND biomedical intervention so that they can in fact utilize their right (as you say) to decide for themselves how best to procede ?

My god, likely the two most famous books about "recovery", Catherine Maurice's, "Let me hear your voice", and Lynn Hamilton's, "Facing Autism", both strongly advocate the need for a balanced treatment approach using both behavioral and bio-medical approaches. Why do we continue in only giving parents in B.C. half of the information ?

Did you read this recent article ? If you haven't you should because topics don't come much bigger or more significant in the Autism community than this one.

http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html

The little girl in this case (and likely 10-20% of ALL kids with Autism the article states) is suffering from a medical condition that needs to be addressed BEFORE any behavioral intervention can hope to work most effectively.

The Government of B.C. isn't telling us about this important piece of the puzzle. Our Autism organizations in B.C. are not telling us about it either and this in my opinion is a travesty.

I'm not saying in any way that it's should be FEAT's job to do so, but don't you think it should be somebody's job to tell parents about it ? And further, don't you think that it is well within the realm of this forum, as a resource for parents to discuss things, to talk about whether in fact we think some organization in the province SHOULD be providing this information ?

[Brad & Roxanne Black]

This chat board is meant to discuss science based treatment, ABA, period. I think we all get that right? I know many great families who do ABA AND biomedical treatment. It's your right as a parent to do what is best for your child and only you can decide on that! I have been advised that the Autism Society chat board is the place to discuss other forms of treatment such as biomedical. Why not use that resourse instead of fighting each other on this chat board. Frankly I am tired of both sides going at it, after all aren't we supposed to be in this together. Let's respect each other and realize this is not the place to discuss it!

Respectfully,

Roxanne Black

[Jemma Lee]

Personally, I am tired of the media talking about autism treatment without talking about science, regardless of WHICH type of treatment they choose to present. Even a presentation on Lovaas ABA is not very exciting if no one talks about the data behind it.

Before you tell me how much science there is behind biomedical treatment, ask yourself whether or not you know the difference between science and technology. If a treatment uses the most advanced biomedical technology, but no one has compared the results against a control group, then we're not talking about science.

A control group does not necessarily mean a group of children receiving no treatment at all. It can be a "no biomedical" group, to be compared against the biomedical group. That's a lot better than no proof. The problem is that treatment providers don't need to do the experiment because the public is happy to pay good money for unproven treatments anyway.

Jemma

[Todd Dea]

Laurie,

Well given that less and less people are actually doing anything that resembles traditional lovaas therapy, the fact that it wasn't mentioned on the show certainly shouldn't come as any great surprise.

As far as Jen's post though I couldn't agree more. Both of your annual two a year posts (as you put it) this year managed to come across in quite a patronizing and sanctimonious way in my opinion. Go re-read both of your posts and put yourself in the shoes of a parent, reading them for the first time, who has tried traditional ABA therapy but found that it didn't work for their child (Even Lovaas in a clinical environment didn't work at all for 15% of the kids). How do you think that your "there is only one correct way to do things" message is going to make them feel as they explore other options.

I'm happy that traditional therapy worked for your child. But please be a little more aware about how you spread the "gospel". As with anything, there is a point when being on the "bandwagon" can go a tad overboard and come off in a negative way.

[Laurie Guerra]

Take note, Jen, I've posted on this board perhaps 2 times in the last year. I haven't the time nor the energy to be "restirring" anyone's pot. I watched the show for a half hour or more and for a topic so close to my heart I didn't see anyone "screaming" out the answer (which is what I said I wanted to hear.) My son has reached near recovery from this epidemic and it's thanks to listening to Sabrina and Jean "scream" out the truth. I will continue to tell the world that and expected to hear it in the near 40 minutes I tuned in to Larry King.

[J.Graham]

Gee Laurie, what show were you watching?
I saw Tony speak about her sons home therapy program and how he is starting to talk due to it.
I saw Dr. K talk about medical therapies for his son and others.
Doug spoke about both as did Holly.
I don't think they were lying…

If you meant to say that you wished it was a program competely on the science of Lovaas ABA treatment and not on the science of the other treatments, then you should have said so.

Otherwise, you are just restirring a pot on an ABA board and me thinks I'm not the only one getting bored of that.

Jen

[Laurie Guerra]

Hi all,

Did anyone else see Larry King yesterday? I don't know about you, but every time I hear that Autism is going to be discussed on a Prime time show I get so excited that we are finally going to hear the truths about treatment and have the professionals scream out loud what we have been fighting for for so long. Once again, I was disappointed. I wanted to jump through the T.V. screen and yell, "Pick me, pick me to show you how important treatment is! Let me show you my son and how "typical" he behaves when you actually allow the science to work for you." Let's get Sabrina on Oprah or Larry King!!!!
and oh, by the way please bring some books to the rally. I want 2 for me!

[Francine Nicols]

Hello me again

Sorry forgot to leave my contact info. You can reach me directly by email at kevandmaddie@telus.net. Thanks!

Maddie

[Francine Nicols]

Hello

A parent friend recently told me I should file for the Disability Tax Credit Certificate (form 6729??). I already filed the T2201 form and had our past taxes reassessed. Are these two different forms or the same?? Can anyone out there enlighten me about this? Any feedback is greatly appreciated.

Maddie

[A Father]

Hello everyone,

I as a father whose son was recently diagnosed, I am always interested in what our government is planning for my son’s future. I used to spend my lunch hour surfing the Internet looking for articles about advocacy initiatives. Now, there is an online centralized source to find all the latest advocacy news!

I would like to invite everyone to visit the new Medicare for Autism Now blog. It is FEAT's non-partisan political initiative to have Autism treatment covered by Medicare.

This blog is already filling with information about the upcoming rally on March 2nd. It has news releases, articles, event notices, links to useful resources and even videos! It is a great place to see the progress we are making and to leave your comments. As we get ready for the next federal election we will be updating it with even more information.

We are all in this together so let’s get together online and talk about this initiative. I’ll meet you there!

Visit: http://medicareforautismnow.blogspot.com/

[Author]

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