[Deleted User]

I HAVE to address this funding issue with respect to cutting children off at 7.

Please for the love of G_d would parents PLEASE stop saying they can empathise with the government and " the province is broke". Start going through your provincial audits and you will realize REALLY quickly this is NOT a matter of resources guys , it IS a matter of priorities.

I know BC is a different province from Ontario, but just to give you an idea of some perspective here…
last year in Ontario we spent over 3.7 BILLION dollars on treating smoking related disease and drug and alcohol addiction. PLEASE PLEASE PLEASE don't tell me you understand how they can not find the money. Those people made choices our children didn't. I sincerely hope for the sake of the children and advocacy this parental mindset of status quo changes.

We spent 498 million , on criminals….

The money is there, this can and will be funded in a universal manner, but not by believing it is impossible.
sorry but from a mother fighting with everything I've got to save my 6.5 year old the last thing I want to hear from another parent is understanding the governments position regarding the arbitrary attack by provincial powers of innocent children needing effective necessary medical treatment for their autism.
n.w.

[Deleted User]

As a parent of a child who is among the 47% of children who have recovered after a 3 year intensive ABA program, I am compelled to say the following, PARTICULARLY to you new parents out there who despite the scientific data on ABA may still have concerns/doubts regarding this treatment. Before learning about ABA (and it was certainly not through the "help" of the Autism Society,) we tried some community based speech therapy,infant development program,and a few other assorted therapies. These treatments all proved ineffective and we wasted valuable time. Surely we can all agree that the earlier the child is treated the better? Anyway, I learned about FEAT and ABA when my child was 3 years old and thanks to all the information and time supplied by Sabrina Freeman we began our program and never looked back. It was truly amazing to see skill by skill mastered rapidly when we'd been trying to teach our child using other methods with limited success. Like all you parents out there I dreamt for recovery, and we lived ABA 24/7 for 3 years. My child didn't recover over night,but we watched and we hoped and we rejoiced as each new skill developed. It was during this time that the realization struck me that even if my child didn't completely recover, the ABA program was still worth every penny and every effort because each skill mastered was helping my child make sense of what was at that time a very confusing world for my child. To make a long story short, ABA saved my child and gave my child their life back. My child now attends school in a different area from where we did our ABA program and no one is aware of our past. In short, my child has recovered. For you sceptics out there, my child's recovery has been fully documented, complete with independant psycholgist following treatment. I think that the reason you don't often hear from the 47% who have recovered as the result of an ABA program is that people have fought so hard to be "indistinguishable" that they want to protect their privacy and their child's identity as do I, but I feel so compelled to speak to the new parents who may feel some trepidation regarding an ABA program. Please make no mistake ABA is the sole reason that my child recovered. I recognize that different children can have different outcomes, but ALL children benefit from ABA and some do recover as my child did. Please give your child that chance. Today I wanted to gave a voice to the 47% who have recovered. The families and children are out there,but for obvious reasons often do not speak out. I consider myself a lifetime FEAT member despite my child's recovery because I care so much about what happens to all these kids. Please remember that Sabrina Freeman has worked tirelessly and on an UNPAID basis for the children with autism in British Columbia and it is through hers and Jean Lewis's effors primarily that the newly diagnosed children in BC now have their chance to have funding for their ABA programs. Please use this opportunity and provide your children with this medically necessary treatment.
I would also like to respectfully suggest that the purpose of this chatboard is not to debate the merits of ABA vs other unproven treatments. For those who seek other treatments, there are other chatboards.
In closing I would like to send my respects to Sabrina,Jean, David Chan,David Bridges,Norrah,Avery , Michelle B,and Barbara R. You are the guts of this board. Don't ever change. Have I been a little personal today? Yes I have, but you see this has been a very personal story.
God Bless.

[Deleted User]

This post needs a rebuttal

"In my
opinion, the most important thing is the kids, and as a
result, I try not to pick sides. FEAT members, however,
have spent a great deal of time discrediting everything that
is not ABA. I myself have been told by FEAT members (and it
has been posted on here several times) that if you do
ANYTHING except ABA, you are harming the child. I have even
heard this go as far as to be called abuse!!!! I would
really like to know, how (even with the best of intentions)
people who believe so strongly that there is only ONE answer
to Autism, intend to continue to freely pass out information
about "garbage" approaches or "therapies of the week", which
they view as harming a child. I just can't see that as
happening."

I am a FEAT member and resent your efforts to put words in my mouth. Yes, ABA is not the ONE answer. It is, at this time however, the best answer by far. As a parent I employ other interventions to promote the HEALTH of our child. I have promoted this attitude to other parents. I do understand that these other interventions are benefitting my childs health, not treating the disease of Autism. If you are concerned that FEAT members may try to prevent misinformation about other interventions as 'treatment' then I hope you are right.

My child needed ABA at age 2. My child didn't start getting ABA until age 7. Because of that my child was denied the best opportunity to recover from Autism. Recovery is still our goal but it will be a longer road. How can the denial of a valid medical treatment to a child suffering from a debilitating neurological disease be anything but abuse?

The reason ABA works is that it addresses the root cause of Autism, a very abnormal development of the brain. The very best neuroscientists in North America recognize that the brains of people with Autism develop differently in structure than typical people. They believe very strongly that large amounts of positive reinforcement delivered for desirable 'typical behaviour and responses' (as it is in ABA) allows the brain to gradually change the way it is 'wired' and structured to that of a typical developing brain reacting with a 'typical' response. This is because our 'reward center' in the brain plays a part in structuring how we react to stimuli. This is the medical aspect of ABA treatment many people don't get who are so confused by the large volumes of 'interventions' out there touted as treatment.

Our ABA consultant recommended we try "Fast Forward' for our child. This is a program that focuses on and trains my childs ability to process language. It is working very well. I would not however recommend it as 'treatment' because it isn't. It does however augment my childs treatment program well at this time. Without ABA I could never have gotten my child to sit still for 20 minutes 5 times a day and respond to several hundred 'trials' per 20 minute sitting that the Fast Forward program requires and do it with a smile.

Fearmongering and misinformation is not going to stop the efforts of parents in this province from creating meaningful progress to eliminating the abuse, misinformation, and discrimination perpetrated by our govt. Face it, without this desperately needed change ASBC will continue to serve only those who are content to bury their heads in the sand, not their Autistic children.

[Deleted User]

Good Day,

Well I have taken a break this morning to take time to read the many new postings on the FEAT chat board. Since the posting of the "Friends of the Autism Society" letter there has been a lot of debate and honestly, I only skimmed through most of the postings.

As a new member of the ASBC Board of Directors, I am shocked and dismayed at the contents of the letter. Essentially, it is misinforming propoganda with little basis in fact. The current Board of Directors at the ASBC has been democratically elected in a fair process which was carried out according to the constitution of the society. Michelle (my wife) has posted previously about our motivations and intentions when I decided to run for the Board of Directors. Those are the facts. To those of you who may have decided to sign the petition, I am sorry to say that you have been duped.

To my mind, the letter constitutes discrimination on the basis of association. I believe this type of discrimination in not for profit organizations is specifically mentioned as a big no-no in the BC Human Rights Code. The Board of Directors has made no statements regarding a change in direction at the ASBC and to my knowledge (and I think I would know), nothing has been planned. Therefore, the only basis that I can see for the letter is that some of the new Board members have attended a FEAT meeting or two or have posted on the FEAT chat board. Since I am one of the individuals being discriminated against, I am very offended.

I cannot stand discrimination of any kind and as a member of the ASBC Board of Directors, I plan to make my views very clear on that issue. I speak against discrimination on the basis of treatment choices, on the basis of age, association, race, language ability, or any factor which will prevent us from doing the best that we can for our children and for adults living with autism. Most of all, I stand against discrimination on the basis of disability. Children, parents, and adults living with autism have faced discrimination for too long.

This letter and petition have only strengthened my resolve to stand up for my rights and the rights others.

To anonymous (several posts ago), I find it very hard to imagine that FEAT, as an organization, is capable of suppressing information about treatment options. While there may be parents who are associated with FEAT who may take this perspective, and they may be vocal and post on the chat board frequently (as is their right), they do not control the ASBC (as insinuated by the "Friends of ASBC" letter). While the ASBC Board of Directors may include several FEAT associated parents we are all individuals, we have our own opinions and I am looking forward to hearing what those perspectives are.

In the end, democracy will rule the day. I would encourage all interested individuals to take out a membership in the ASBC and participate. Let your voice and your vote provide direction. For those of you who choose to follow this path, I will say the following……..united we stand, divided we fall. The discrimination against people living with autism has been assisted by our division. Those behind this petition seem intent on continuing that division.

All the best to you and your families,

Justin Himmelright

[Deleted User]

I feel that FEAT parents feel strongly about ABA because their own children are living proof that it works. They are parents, who, like me, have a choice where to have their child's treatment. Many in FEAT – I am sure tried the government route with no success, such as non ABA treatments. I haven't gone that route because I have spoken to FEAT parents and I am so greatful in getting their honest opinions as a new parent to autism. These parents know the road many new parents face, and thank God for them and the big win in the legal battle that has opened up doors so we don't have to face quite what they faced.

I shutter to think if they didn't fight for our autism kids in the court of law how much parental control we all wouldn't have gained. We are the parents: we have the right to have our child educated where we want, we have the right to refuse treatment if we want, and we have the rights to decide what's best for our children. Feat just enforces this. I am greatful FEAT exists. The autism society has done nothing for me, sorry to say. It would be better if they had more support for families, offered a school where child specifically with autism can attend (such as a normal school list that has trained ABA trained SEA'S and teachers – so children with this handicap aren't kicked out of it or instead of saying I don't know of any school, or most children have a bad experience) offered some funding for treatment, also there are parents working at that society whose own children are in ABA or will be.

I am one of the parents who doesn't qualify for IEII. (Like many parents whose child is over 7, or doesn't have a Sunny Hill diagnosis, etc..) There should be no age restriction for children recieving treatment, there should be no restrictions in where children get diagnosed or by whom. Many of these so called professionals like to give themselves jobs, but have not the best interest of our children. We do, no one loves them more than us. That's the point.

**In closing, my child has not recieved ABA treatment at all. Being very honest, I wish that the professionals in this ABA field would be more willing to charge hourly rates, but that is a discussion that need not be discussed over and over. (I have tried for almost a year now to get support from this route and to no avail.) I shall keep trying as I believe ABA is the BEST for a child with autism.
I do have one question, does anyone have any suggestions for ABA for parents to begin at home? Such as any treatment suggestions, etc.. Rachel Russell mentioned in her post about documenting behaviours. (I would appericate any suggestions) -I would be very open to suggestions.
My child is entering the first grade so any ideas are appericated!
**

Thank you all for your beliefs and keep it up. I know that your not extreme people, your parents who have found a successful treatment and know the truth. Many other ways have proven unsuccessful. It's pretty sad that the children with cerebal palsy (I am happy for them)get treated with much support, and yet children with autism don't get the same considerations.!

[Deleted User]

Good post

anonymous #2

[Deleted User]

I wanted to make this post in response to Michelle’s post describing her beliefs about the intentions of the new ASBC Board. First off, thank you Michelle. Your statements (in my opinion) really help to clear the air around the future of the ASBC. I am however left with questions. I too WAS concerned about the impact of so many FEAT members on the board of the ASBC. I believe that this concern in myself as well as others stemmed from the “radical” (no offence intended) perception of FEAT members. I am 100% for parents receiving as much information as there is on ABA, and FEAT is right in saying that ALL children should be entitled to ABA. I do believe Michelle when she says that her husband’s intentions are not to force ABA onto everyone. I do wonder though, whether ASBC will continue to provide information on ALL other possible avenues for the kids. I hate to say that I doubt it, but I am still concerned about that. In my opinion, the most important thing is the kids, and as a result, I try not to pick sides. FEAT members, however, have spent a great deal of time discrediting everything that is not ABA. I myself have been told by FEAT members (and it has been posted on here several times) that if you do ANYTHING except ABA, you are harming the child. I have even heard this go as far as to be called abuse!!!! I would really like to know, how (even with the best of intentions) people who believe so strongly that there is only ONE answer to Autism, intend to continue to freely pass out information about “garbage” approaches or “therapies of the week”, which they view as harming a child. I just can’t see that as happening.

My intention of this post is not to bash or insult anyone, especially FEAT. I hole heartedly support FEAT and their cause, but I am still concerned that FEAT will suppress anything that is not ABA. I do not blame FEAT, that is it’s nature, and on this chat board, well that is the purpose (to promote ABA I mean). In the rest of the world, ideas should not be suppressed. People should be given ALL of the information (including ABA), and left to choose for them selves. If ideas, information and knowledge are suppressed, any hope we have of advancing will be suppressed as well. If Dr. Lovaas had been suppressed by an advocacy group as influential as FEAT, ABA may not exist today. For all we know, one of those “Therapies of the week” may be the best treatment for Autism. Maybe after some restructuring, one of those therapies may appear to be superior to ABA. Maybe not, and probably not, but who knows unless you give it a chance.

[Deleted User]

Avery, Michelle, et al.

Thank You. Those were the answers I was hoping for. I just hope other ASBC members get a chance to hear your stories.

ASBC members probably figure that FEAT members are all wild-eyed radicals hell-bent on their own agenda. I'm sure many ASBC members are scared that such a major change will destabilize the organization, reducing the pitiful services even futher.

Yet you've made it clear that your family's "agenda" is to help your own child, and to help other parents as best you can. Fairly, respectfully, passionately.

ASBC is in good hands.

Best of Luck

Anonymous on Wednesday, July 17, 2002 – 08:45 am: (who is a parent, dedicated to ABA for six year now).

[Deleted User]

There have been some excellent responses to the recent debate but I do feel the need to add my comments.

First of all, I realize there are a lot of us who are angry from battling the government, from battling with other parents and exhausted from the daily struggles of having a child with autism (let me assure you I have and often continue to find myself in this position) but could we please refrain from name calling, sarcasm and insulting one another's therapy choices? This chat board is mainly made up of pro ABA people – that is its purpose – if you are not pro ABA you are welcome to post comments or questions or even question the validity of studies etc because we can quite happily provide data to back up our arguments but please don't insult our choice. Keep negativity to yourself. And on that note, those of us ABA parents have every right to defend our choices but we should refrain from insulting the choices of others, its unprofessional and unbecoming. And I realize that is hard because we are a passionate bunch but…let me put it this way, you won't win anyone over to your argument with insults.

Okay, enough said on that, please don't flame me!!! ;-)

My husband is a newly elected member of the board of ASBC. Because he is extremely overworked at the moment, I thought I might answer some of the anonymous' post regarding the intentions of new members and will they represent the non ABA children etc. I will start by apologizing that I can not answer every point, too much there for one response. I also do not speak for FEAT of BC or for any of the board members, but I do know the intentions of my spouse.

here is our story, the background is essential as to why my husband is on the board. bear with me, it does get to my point.

When my daughter was in the process of diagnosis over 2 years ago. We turned to our local ASBC group for support. We also contacted the Austism society and received their parent package. AS I began to research autism I began to hear about ABA. I searched through my parent package and found VERY little about ABA. Nothing that would help me get started or even find someone to help me get started. I also asked at my local ASBC group. I was met with blank stares, no one, not even the facilitator said anything. One woman volunteered an article that argued that Lovaas ABA was not as effective as the scientific studies believed. I later learned that the facilitator and at least one other parent there that night had ABA programs for their children. When I asked this facilitator about the success or lack thereof of her child's aba program, I was first told it was useless and that I should go with CBI services. Minutes later she admitted that her ABA program had taught her child eveyrthing he knew and that he had made significant gains.

Feeling a bit confused about ABA and wondering if it wasn't all that it was cracked up to be, I read my ASBC newsletter and happened to stumble across the FEAT of BC phone number, called and Jean Lewis answered every question I had with facts. At that moment I walked away from ASBC.

I continued at my local support group for a few months but found that the hostility of the non ABA parents was too much to take, despite the fact that I was always respectful of their differences and how my decision to choose ABA might be upsetting to them. The last meeting I attended, a new parent was there. She was looking for information on what to do with her autistic child. no one even suggested she look at ABA. THey told her to get a social worker that she would be waitlisted and proceeded to moan about how horrible life was with an autistic child. I was the only one who breathed a word about ABA, and due to the hostility in the room, I am embarrassed to say, I whispered her information about FEAT of BC on the break.

AT least she got the info and today is very active in helping others get started. But months later when she tried to inform the parents of the support group about an EAP event, she was made to feel extremely unwelcome and when she left several of those parents cheered, including the once ASBC facillitator.

My husband and I have since spoken to many parents with children wiht autism. We have helped many parents in our community to learn of the transtion money, parents whose child was eligible but who had not been told of the program. We helped parents start ABA programs, find therapists and we listened when non aba parents talked about their hardships. It breaks my heart to see children not getting treatment, not improving. even worse is when I meet a parent where no one told them about ABA, parents who had they known may have chosen to do ABA. We have heard so many stories of the ASBC not providing adequate information to paretns.

The ASBC has withheld information from parents more times than we can count. Perhaps their intentions were good (although I cynically wonder how they could be), perhaps they were not. I have been told and from what I have seen, my opinion is that they do not tell parents about ABA unless you directly ask for fear of setting your hopes too high on something you can not afford. That is crap! No one has the right to decide whther you get information based on whether THEY think youc an afford it.

I do agree that the ASBC must be able to provide parents with the options and information on practices other than ABA but the ASBC should also stand behind parenst doing ABA and tell new parents about this option. ABA is scientifically proven to be effective. Their have been replications of the Lovaas study, wisconsin has preliminary results that are very similar to Lovaas and include some promising findings for home programs. ABA has been proven in the courts to be medically necessary. ASBC must provide this information to parents who want to know. And a parent should not have to be in the know and ask, new parents should be given information about ABA and then allowed to take or leave it.

We did not join the ASBC in the past because we didnt' feel it was money well spent. Over the last 6 months as our lives have become smoother, my husband and I began to talk about the need for changes in the system. We have been so blessed, our children our doing amazingly well. And while we have helped others, we felt we needed to do more. When the opportunity to run for the board of directors arose, I urged my husband to go for it.

His intention is not part of some conspiracy. He does not have a secret agenda to promote. He does not plan to force parents to do ABA. But I will mention that when we joined the asbc a few months ago, we received the same parent package we received year ago. It still lackied sufficient info on ABA. THat package confirmed to us that soemthing needed to change. The ASBC must represent all parents of children with autism, all children with autism and all adults with autism. It was NOT doing that.

There were many children who are now adults, teens or older children who did not get these opportunities, and who suffer as a result. The asbc must represent them but it must also ensure that children wiht a medical condition receive medical treatment. Parents must be given the access to this information. WE can not continue to allow so many people with autism to not recieve treatment.

And no, FEAT of BC won't be organizing book burnings. We are all for freedom of information, we have the data and the facts to back our arguments up. We don't need to burn the opposing arguments. We are happy to stand up to them.

And no we won't be laundering money, taking money or using ASBC to get government money. We quite like our independence from corruption. If we had wanted governemnt money, we could have taken it before, but it would have forced us to sacrifice all we believe in. No thanks.

And no, FEAT of BC parents who participated in the previous lawsuit will not be getting money form ASBC to pay them off. THat is a ridiculous statement and rather offensive and I am not even a participant of that lawsuit. Those parents sacrificed themselves financially and emotionally to fight for something they believe in.

Members of FEAT will argue against anyone who prevents families from accessing ABA, but those who choose not to practice ABA have every right to do so. All we want is for the information to be there – informed choice not lack of choice.

Please remember that there are lots of non FEAT people on that board. Will they represent all of the new parents of children with autism who want ABA services? Did they ever represent us before? THey did not represent my two children with autism.

And finally regaring the children who do not recover comment: ABA is not a guarantee of recovery. The children who did not recover during the Lovaas study continued to receive one on one treatment. THose children made and continued to make significant gains. THey didn't lose their diagnosis but many of them lead productive lives. THeir quality of life is in all likelihood significantly improved from what it would have been. I am fortunate that my consultant worked with those children and was able to tell me about these successes.

I hope this answers some of those questions. Those new board of directors who came from FEAT of BC are individuals. FEAT is not some political party where there is a whip who forces others to tow the party line. Those new directors are parents of children with autism who happen to believe strongly in ABA and who happen to feel the ASBC was serving a small minority of parents. In its previous state it did not served the 80% or however many were not practicing ABA, it served a much smaller number than that. And sadly it seemed to work very hard to serve the government and those who have their hand in the pockets of the government. The parents of children with autism deserve more.

Michelle
mother to Breanna and Griffen, two diagnosis, two program, two very real success stories

[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

[Author]

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