[FEAT BC Admin]

This area is for discussions in general topics.

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[Deleted User]

I agree with the anonymous, we have just started to get a team together, but not all of us can afford ABA therapy. im trying to get the best people i can but cant afford $1200 a day for a consultant. Im new to this whole autism thing as my son has just been diagnosed.I think every child is different, and other methods besides ABA may work for some. I have to hope my son is one of those because as i sais we cant afford some groups. I thank feat for your support and i love hearing what everyone thinks, but we all have to keep and open mind as evey child is different.

[Deleted User]

I am posting anonymously not because I do not stand by what I say but to protect the people I care about. It is also my right to do so. Judging from the responses I've seen to my original post, I was correct in my concerns. I stand by my statement that ASBC and FEATBC need to work together in order to help all concerned.
I chose not to do ABA because I could not afford it. This was prior to the funding battle. I do not receive the magical 1677 as my son is 10 years old. I also chose not to do it because the original studies came from Nazi Germany when they were trying to make normal human beings into robots. A far cry from what I wanted for my son. There are many protocols for autism that have some basis in science and are backed with scientific trials. Double blind studies…. DMG, Secretin, and nutritional supplements, music therapy, auditory integration to name a few. I would caution any one into thinking that any one therapy is the panacea for autism. Personally I believe that someone can not be cured of it. They can become higher functioning though. My experiences with both FEAT and ASBC have been a mixed bag of support. Each organization have their benefits and their drawbacks. I would like to see more lobbying from ASBC to the government. Community Living Services has never given any advice to me about what therapy I should use with my son nor did ASBC. Both agencies gave me information on where I could find more information to help my son.
I knew my son had a problem when he was 14 months old and by the time he was 2, I knew it was autism. However, my struggle did not end there… My son was diagnosed at age 8.5 years with autism, encopresis, receptive/expressive language disorder. I have fought with the school system for services as well as CLS. Now I carry on the battle with Supported Child Care to recognize that special needs children daycare subsidies should not be treated like NT children daycare subsidies. This has happened since May 2002 and the majority of my son's funding was cut because as a single parent I make too much money. They no longer allow deductions as a single parent, nor the extra expenses I have for my son like speech, housekeeper so I can work with him. Never judge someone based on the assumption that only you have suffered…. Not all of us wear our battles on our sleeves.

[David Bridges]

I find myself in total agreement with Anonymous (1:07pm). And with the next anonymous posting.

Looking back on my experience when my son was first diagnosed, the Autism Society did NOTHING for me. Rather it was the help and guidance of some Feat members that set us on the right track.

One final point regarding the writer who brought out the spectre of racism – what a cheap and cowardly attempt at smearing this org.'s reputation! A good tactic when you have no real argument.

You should be ashamed of yourself.

Dave Bridges (unlike you I am not afraid of standing by what I say)

[Deleted User]

I feel that this attack on Feat is uneccessary. I am a new parent who found out a year ago about her son's autism diagnosis. Feat of BC has been there for me more then any other other faculty. (Including Autism society of BC which is a government butt kisser). I want new parents, including myself to be able to have more support out there for families in all aspects. I haven't started an ABA program, however I do stand behind Feat 100 percent.

Those parents who fought the government and won THANK YOU! You stood up for ALL FAMILIES and if weren't for you parents like me wouldn't know where to turn. My comfort is that so many parents associated with FEAT have taken the time to support me, where the Autism society hasn't compared at all. Sure parents work there, but there still working for the government as far as I am concerened.

And as for the person who asked all about ABA and Feat do you work for the government? You sure sound like one of their robots. Firstly, ABA has a better success rate then any other treatment, and if you had a child with autism, which I don't believe you do, wouldn't you take forty plus percent over nothing.

My only frustration with ABA is that if you don't have the money, good luck in getting help. My frustration is endless with this. We don't qualify for IEII at all. However, it is the best option for most parents and if we all work together we can do all things. Such as school issues, etc.. we need to have someone who will support families and be a true adovocate in The Autism Society. The government and Feat working together that would be interesting. I once again say thank you FEAT. From a new parent you saved my sanity and I am fully supporting you as you have supported all of our causes.

[Deleted User]

FEATBC vs. ASBC

When my child was 4, (he is now 8.5), he was diagnosed at Sunnyhill with Autism. At the end of that assessment I spoke at length with the diagnosing physician who was head of the assessment team. I asked that person what I could do for my child, and more specifically what was the best treatment option. That was the first time I heard of ABA, I was told if I want my child to recover that I should consider moving out of the province to an area where ABA services were delivered and I should be prepared to spend $40 000+ per year. Unfortunately for my child this was not an option I had the resources to deliver on. I also note that the recommendation was not put in the assessment. As time has passed our situation has changed and we able to assemble the resources to deliver ABA treatment to our child, for the time being. Our child is now making strong progress towards recovery from the disease of Autism. This would not have happened for our child if FEATBC hadn't been there to support us in making this happen.

In the first 2 years after diagnosis the only interventions we tried were those recommended by the local 'Community Living' group, funded by govt., which consulted with ASBC to come up with services for autistic children in our community. We found these services useless in terms of treatment, for example; suggesting our son wear a weighted vest throughout the day, exercises in a pool with weights. Others were more helpful but inadequate; a half hour a week of speech therapy.

However I do believe there needs to be an agency or organization that is willing to discuss things with parents that may help autistic children outside of treatment. For example; my child had chronic bowel problems for 3 years. This was an ongoing cycle of discomfort which included periods of not being able to go followed by projectile diarrhea, his food didn't look digested, and as the problem continued he would pass gas daily that would knock you off a horse. School staff complained about this and our Doctor couldn't find a solution.

We eventually heard about gluten and dairy free diets helping autistic children. Deciding we had nothing to lose we tried it for our child. 2 months later the gastro problems were mostly resolved and a year later completely resolved. Many people consider this diet to be a 'treatment' for autism. We do not (and I mean that in the strongest terms, though at one time we did) but it did lead to improved behaviour due to the lack of pain our child had been dealing with. Normally I do not bring this kind of thing up on this site because I would expect to be shot down for posting about a 'fringe' treatment that others may think of as a substitute for ABA.

I guess what I am trying to point out is that people at ASBC who are opposed to FEATBC members need to get their heads around this idea; that a shift to stronger advocation of ABA as a 'necessary' medical treatment that is 'available' and 'accesible' to all children regardless of age or family income is sorely needed in this province. If ASBC cannot or refuses to make that shift they are letting down the children in this province who desperately need quality and proven treatment.

Also I am trying to point out that there is a hostility I have taken note of on the part of some FEATBC members to mention of 'other' services or interventions that may help individual children or subsets of autistic children. Diet for my child being case in point. It didn't treat the disease of Autism but did improve quality of life. However I understand this hostility considering the incredible opposition we have all faced as parents in trying to fulfill our parental duty in obtaining treatment for this disease. Ignorance has been the barrier to protecting the rights of our children who have faced discrimination, abuse, and neglect, from our govt. and communities.

I believe a little more tolerance is needed on the FEATBC side of the fence in accomodating differing viewpoints. Intolerance has a way of spawning opposition of the sort some people at ASBC are currently creating.

I do not support attacks on people like Barbara who in the face of incredible opposition to obtaining treatment for her child continues to do the right thing – supporting some desperately needed change for the benefit of the autistic children. I would caution those at ASBC who would try to interrupt the necessary shift to advocating for ABA as the only best practise treatment. You risk losing the support of some of the families for which you advocate as well as any integrity you still retain as true advocates for chilren suffering from Autism.

My community is full of Autistic children and adults. The only child receiving an intensive ABA treatment program to my knowledge is mine. Some of the other children still wear weighted vests, do exercises in a pool with weights, and receive "hippotherapy" or supported horseback riding, all to improve their vestibular functioning I am told. This, most of all, is what needs to change. It is my sincere hope that the petition sponsored by an ASBC member will fail and that members of FEATBC and ASBC can work together to facilitate a change for the better for our children.

'Anonymous 68'

[Deleted User]

FEATBC vs. ASBC

When my child was 4, (he is now 8.5), he was diagnosed at Sunnyhill with Autism. At the end of that assessment I spoke at length with the diagnosing physician who was head of the assessment team. I asked that person what I could do for my child, and more specifically what was the best treatment option. That was the first time I heard of ABA, I was told if I want my child to recover that I should consider moving out of the province to an area where ABA services were delivered and I should be prepared to spend $40 000+ per year. Unfortunately for my child this was not an option I had the resources to deliver on. I also note that the recommendation was not put in the assessment. As time has passed our situation has changed and we able to assemble the resources to deliver ABA treatment to our child, for the time being. Our child is now making strong progress towards recovery from the disease of Autism. This would not have happened for our child if FEATBC hadn't been there to support us in making this happen.

In the first 2 years after diagnosis the only interventions we tried were those recommended by the local 'Community Living' group, funded by govt., which consulted with ASBC to come up with services for autistic children in our community. We found these services useless in terms of treatment, for example; suggesting our son wear a weighted vest throughout the day, exercises in a pool with weights. Others were more helpful but inadequate; a half hour a week of speech therapy.

However I do believe there needs to be an agency or organization that is willing to discuss things with parents that may help autistic children outside of treatment. For example; my child had chronic bowel problems for 3 years. This was an ongoing cycle of discomfort which included periods of not being able to go followed by projectile diarrhea, his food didn't look digested, and as the problem continued he would pass gas daily that would knock you off a horse. School staff complained about this and our Doctor couldn't find a solution.

We eventually heard about gluten and dairy free diets helping autistic children. Deciding we had nothing to lose we tried it for our child. 2 months later the gastro problems were mostly resolved and a year later completely resolved. Many people consider this diet to be a 'treatment' for autism. We do not (and I mean that in the strongest terms, though at one time we did) but it did lead to improved behaviour due to the lack of pain our child had been dealing with. Normally I do not bring this kind of thing up on this site because I would expect to be shot down for posting about a 'fringe' treatment that others may think of as a substitute for ABA.

I guess what I am trying to point out is that people at ASBC who are opposed to FEATBC members need to get their heads around this idea; that a shift to stronger advocation of ABA as a 'necessary' medical treatment that is 'available' and 'accesible' to all children regardless of age or family income is sorely needed in this province. If ASBC cannot or refuses to make that shift they are letting down the children in this province who desperately need quality and proven treatment.

Also I am trying to point out that there is a hostility I have taken note of on the part of some FEATBC members to mention of 'other' services or interventions that may help individual children or subsets of autistic children. Diet for my child being case in point. It didn't treat the disease of Autism but did improve quality of life. However I understand this hostility considering the incredible opposition we have all faced as parents in trying to fulfill our parental duty in obtaining treatment for this disease. Ignorance has been the barrier to protecting the rights of our children who have faced discrimination, abuse, and neglect, from our govt. and communities.

I believe a little more tolerance is needed on the FEATBC side of the fence in accomodating differing viewpoints. Intolerance has a way of spawning opposition of the sort some people at ASBC are currently creating.

I do not support attacks on people like Barbara who in the face of incredible opposition to obtaining treatment for her child continues to do the right thing – supporting some desperately needed change for the benefit of the autistic children. I would caution those at ASBC who would try to interrupt the necessary shift to advocating for ABA as the only best practise treatment. You risk losing the support of some of the families for which you advocate as well as any integrity you still retain as true advocates for chilren suffering from Autism.

My community is full of Autistic children and adults. The only child receiving an intensive ABA treatment program to my knowledge is mine. Some of the other children still wear weighted vests, do exercises in a pool with weights, and receive "hippotherapy" or supported horseback riding, all to improve their vestibular functioning I am told. This, most of all, is what needs to change. It is my sincere hope that the petition sponsored by an ASBC member will fail and that members of FEATBC and ASBC can work together to facilitate a change for the better for our children.

'Anonymous 68'

[Maureen St. Cyr]

"Anonymous" has questions. I believe I have some
answers. First though, I have to start with a caveat: I am
one person and I speak for myself and my own
intentions.

"Can anyone tell me how many years the government
should fund my son's ABA program? Until he is
"recovered"? Lovaas's study showed 47% of young
children receiving ABA treatment recovered. Should the
other 53% get 40 hours of one-on-one treatment for
life????"

The government should fund your son's medically
necessary physician prescribed treatment until it
ceases to be of any use, in the judgment of the
physicians involved. You should also be entitled to
second opinions of your choice — not the decision of
one person in the employ of the government. There are
many illnesses and conditions which are incurable and
yet medical treatment doesn't cease because of it. If
your child – God forbid – had cancer and the first
chemotherapy treatment didn't cure it, would you like
the doctors to wash their hands of him and tell you to
pay for the next set yourself?

"Are the ABA methods used the same at age 3, at age
13, and at age 33?"

ABA programs are designed individually for the
individual child. This includes his or her age.

"Are there comparative studies to back up the
effectiveness of ABA when applied to older children
and adults?"

I don't know of any. That doesn't mean there aren't any.
However it should be noted the government pays
generously for many treatments for which there is not
yet hard data of efficacy. And the government still
funnels millions of dollars into autism therapies which
are completely disproven.

"How will the recent changes to the ASBC board benefit
or hurt individuals with autism?"

The new members of the board of ASBC are intelligent,
hard working parents. I knew some of them before the
AGM and I'm getting to know the rest now. I am sure
their contributions will help families with kids and adults
who suffer from autism.

"Can anyone tell me if the new ASBC directors are
going to represent the interests of adults with autism?"

I suppose I should feel a little insulted by that question,
but emotions are high here, so I'll stifle it. For the record,
the ASBC constitution says it works for the benefit of all
people in the province with autism and their families.
This is the constitution I read before joining the board of
directors a little over a year ago, and this is what I will
fight for as long as I am a member of that board. That
means people of all ages.

Let's get something straight here, folks. This is not a
brand new board. The majority of members are the
same as they were last year. NINE of the board
members have not changed. Of the other six who
joined the board on August 1, one is a woman who is
rejoining the board, having been a member a few years
ago, and another has been an ASBC group facilitator in
Surrey for a long time. So that makes 11 out of 15. The
other four were nominated from the floor and elected, to
fill positions which became vacant due to some of the
previous board members resigning through the course
of the last year. There was only one sitting, previously-
elected board member who was not re-elected.

"Or the interests of families who earnestly tried ABA for
several years, but found their child was in the 52% who
don't recover? Will they represent the interests of the
80% of individuals with autism who have no connection
to FEAT of BC?"

I think that question is already answered, but let me
underline it. The ASBC constitution says nothing about
what cards you carry in your wallet or what your belief
structure is. The ASBC says it works in the interest of
ALL people affected by autism, INCLUDING the ones
who haven't even joined ASBC. If you are affected by
autism and you want to call ASBC for help, the Society
is bound constitutionally to give it to you.

"Can anyone tell me if the new ASBC directors are
going to focus on an exclusively ABA agenda?"

While I cannot speak for every person on the board, I
think it's safe to say that the nine veteran board
members will probably continue to make their
contributions in the same way they have before, and
the six new ones will find their areas of contribution. I
can speak for myself, however, and I can tell you that
my concerns include the situation for our children in
school, and the situation for our grown-up children
under governments who feel no need to do anything for
them.

"Will the ASBC newsletter only include FEATofBC
approved content? Will there be a book burning in the
ASBC parking lot of all non-ABA titles in the ASBC
library?"

Some might say those questions are not worth
dignifying by answering, and it's pretty clear to me the
intent of some of them is to provoke reaction, but let me
answer them anyway — I will fight any attempt by
anyone – board or staff – to allow any outside agency to
dictate the contents of the newsletter or library.

"Will ASBC money be used to pay for past lawsuits by
FEATofBC members? Will ASBC money and resources
be made available to FEAT of BC?"

I cannot imagine anyone on the current board
suggesting such things, and I believe they wouldn't
even be legal.

"Do the new ASBC directors plan to merge ASBC with
FEATofBC?"

No.

"Will the new ASBC directors refuse further funding for
ASBC from government?"

No.

"Is the plan to gut ASBC, then leave it to die in
retaliation for opposing ABA treatment and for being
useless?"

No. Whether you choose to believe it or not, the plan is
the same now as it was before August 1.

"I have spent more than a year now working to help
Are ASC and other provincial Autism Societies next?
These questions are out there. A lot of people including
myself want to know what happens next?"

Neither I nor any of the other board members can
predict what is going to happen with other societies. I
think we have enough on our plate dealing with our
one society and each of our own families. If you have
spent a year helping, I applaud you and I encourage
you to continue. The ASBC needs more volunteers with
energy and enthusiasm.

I am frankly shocked and dismayed by the letter being
circulated as it is so filled with inaccuracies and wild
suppositions. I hope some of these have been laid to
rest.

Avery Raskin
Ariel's Dad
Vice-President, ASBC

[Deleted User]

Perhaps Barbara, you and David need to re-read the posts…. I don't believe anyone ever said they were opposed to ABA…. but that they were for various options being available, including ABA.

[Barbara Rodrigues]

This is to the Anonymous Post of July 17/2002 -08:45 am:

In response to Norrah's post of 07:38 am you state:

"Can anyone tell me how many years the government should fund my son's ABA program? Until he is recovered? Lovaas's study showed 47% of young children receiving ABA treatment recovered. Should the other 53% get 40 hours of one-on-one treatment for life?

Are the ABA methods used the same at age 3, at age 13, at age 33? Are there comparative studies to back up the effectiveness of ABA applied to older chidren and adults?"

The above remarks I am taking as your response to Norrah telling you about my son's neglect by the government to cut off funding because he is over the age of 6.

First off, in answer to your question – yes my son deserves one-on-one ABA treatment for life or until his doctor says otherwise. In the court ruling Auton 2000 – the judge plainly said that because autism cannot be cured does not mean that you do not treat the symptoms. Just as many cancer's can not be cured – you still do whatever it costs/takes to eleviate the symptoms and help relieve some of the pain. There is a child in our community who is hemopheliac and the medications to keep him healthy cost 5000.00 a month each and every month. This is not a cure but a treatment to help him live as normal a life as possible and he will require these medications every day for the rest of his life. Why then, does my child not deserve the same consideration? How dare you – a parent – put a price tag on my child's life on his future.

In answer to your other question "are the ABA methods used the same at age 3, 13, 33 – well yes the principals are but the programs, the behavior plans, the reinforcements are changed as needed as the data requires and as the child grows. I know a woman who's son was 32 when she found about ABA and he learned to tie his shoes at 33. Today at the 34, he will of course not make the gains of a child that started an ABA program at 3 years old but he is still making gains.

As for comparitive studies on older kids/adults – I am not sure anyone has put any money into research as studies show us early intervention breeds the best outcomes. It's hard enough to get funding for research into autism let alone the 'older' kids. But from our consultant Lisa Wincz's experiences and those we have heard of Dr. Vince Carbone's – we are aware of 'older' children who were never in ABA programs making significant gains when ABA was started.

As for my son, with treatment he was progressing – no he didn't recover – but as long as ABA is helping him, he has every right to have it provided for him. Something you will pleased to know has only happened by us paying privately for.

So you can worry about the made -up book burning at the ASBC and whatever else you feel like doing.

But you keep my son and his right to medical necessary autism treatment out of this situation.

As for my post concerning the ASBC – it was the protection of the FEAT board members that it was posted. To protect ABA and the rights of those members who chose to provide their children with ABA that it was posted. So that the ASBC would be a 'true' advocate for all children with autism – rather than the beaurocratic arm of the MCFD.

It seems to be that those of you on this list opposed to ABA are the fanatical, paranoid ones. You needed worry even if the ASBC is no longer – you have all those 'contractee's' on your side:-)

Barbara
Jeremy's MOM

[David Bridges]

Hey Anonymous!

Why are you even posting in this forum? You are parroting all the specious arguments made by the government in its attempt to deny our kids ABA funding.

In case you didn't know, this is a group for folks who, like most of the scientific community, accept that ABA is a NECESSARY element in their kids' progress and in their quest to lead fuller, more enjoyable lives.

Do yourself (and us) a favour: join another discusson group and stop getting pissed off by what you read here.

I hear Families for Early Dolphin Treatment are taking new members.

Dave Bridges

[Author]

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