[Deleted User]

As a parent member of both ASBC and FEAT of BC, I would be very interested in seeing a response to the posting by Anonymous on Wednesday, July 17, 2002 – 08:45 am. Would one of the ASBC Executive Board members care to address those issues that relate directly to ASBC Board activity? Perhaps some unwarranted fears may be put to rest?

Alexandria

[Deleted User]

For a treatment to be validated on scientific method it must be able to be replicated…. No one has been able to replicate the Lovaas' study. Some of that is believed to be based on a lack of random selection of test subjects and the removal of aversives…. So the study is not as scientific as you might want to believe. ABA has its place and has been helpful to many but again the cost is a serious issue.

[Deleted User]

To David Chan,
Thank you for your thoughtful explanation of ABA, and what it teaches. Speaking as a "caregiver" for people who have never had any treatment, let alone any effective teaching(most grew up in institutions). I have researched / read anything I could get my hands on, to try to be effective as a teacher, and to try to understand how the people I support may be thinking and how they learn…. Your explanation of (what I've found to be) a complex treatment really made sense to me. Thank you for shedding so much light on a very important subject.

Tina

[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.

[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'

[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.

[Deleted User]

here! here! to the last two posts!!

signed Anonymous #2 (the disillusioned Anonymous)

[Author]

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