[FEAT BC Admin]

In this topic area, discussion is on all issues relating to setting up and running a home-based intervention program. Please feel free to bring up any problems or suggestions. Parents can help each other greatly by sharing information and giving suggestions.

In addition to parents helping parents, A.B.A. professionals on in the Discussion Group can also help provide insight and guidance.

Topic

[Susan Burns]

especially to avery and david….you two really crack me up lol thank you so much for your recent postings…..those things really empower me……just a little whine….we have our best therapists around us again but i drastically cut back to few hours per week because our gov't in their wisdom de-listed us from the medical plan and i REMAIN unemployed……my cute story follows…..my deaf son, who remains a procious adolescent with autism may two huge leaps in the past week. as i am home and have time to bake and make porridge etc. etc. etc., my kids have me around when i'm not at the employment agency. one week ago…James approached the stove and straight faced….looked at the porridge and asked me if i thought he was a teddy bear….YOU STILL CANNOT WIPE THE SMIRK OFF MY FACE. [this is the socially inappropriate charmer who requires significant support to attend his brothers' or his own events]…..this week his communication book is full of details and scripts of how he taught the deaf kidnergarten class how to make pizza…….i should be grinning for weeks

[David & Lori DiSanto]

I also attended the EAP sponsored conference and just wanted to add my two bits as a new parent to the autism arena.

First of all, the highlight of the conference was clearly Dr. Sallows talk on WEAPs three year success rate for children in their ABA program. To see programs yield terrific success without daily professional monitoring was very impressive. One of the things I thought when I saw Lovaas' results was "can everyone do this for their child? i.e. outside of a clinic" In the WEAP study there were 24 children presented and they achieved similar results to Lovaas'. The important part of this study to me was recognizing the fact that everyone has their own line therapists and their own level of personal talents. Even for many different families and many different line therapists they were able to get good results. This is important because it means that the key piece of the puzzle is the power of the ABA protocol. Success depends on the talents of the person supervising and devising the ABA program and not so much the talents of the people who are actually executing it in the home. For a new parent in this whole thing this is very comforting. It shows that I don't have to be an ABA expert to achieve good success and it shows that the line therapists don't need degrees in psychology to successfully execute a program. Thankfully the key to success lies in the quality of the person guiding the program.
I guess I should qualify that a bit because I understand that all of the line therapists used in Wisconsin are actually WEAP employees (I might be wrong though). Certainly the experience levels of their line therapists will be greater than we'll be able to find here in Vancouver. However, they're not psychology students (as Lovaas used) and I gather are just regular people who have been trained. We have plenty of regular people in Vancouver so I don't see why we can't train them and achieve similar success rates.
So, it appears that a well guided program will likely achieve pretty good results (if you're willing to roll up your sleeves and work). I feel pretty fortunate to be entering the autism community here and now when there's some qualified professionals available to give guidance. I think I must feel a lot more encouraged than some of you who, 10 years ago, were in the same place that I am now.

Now, regarding the second talk (by Mrs. Hamilton) on alternative medical-style interventions. I personally found this talk pretty interesting because I don't know what people are talking about as the "wave of the future". Like most things I'm sure there's a "wave of the future" every year but certainly as a new parent I don't want to be ignorant and just pretend other peoples ideas aren't interesting just because there's no direct data right now. I understand the points made by the people on this board earlier about all of these claims being unsubstantiated. However, unsubstantiated or not I'm interested to hear what's out there. For instance, I'd heard of most of the alternative treatments she listed but had never heard anything about mercury poisoning (remember I'm pretty new). So, now I know more about what's going on in the autism community. Certainly Hg poisoning is an interesting topic and I'm glad I was there to hear something about it. Unfortunately, I think a lot of parents are going to leave there and think "I've just gotta GOTTA get that Hg out of my child". That was the real weakness of her talk I thought… she didn't really indicate how controversial these treatments are.
So, for my take on the second talk… this was an interesting overview of some alternative treatments. Take it as that… an overview of what's "out there". Unfortunately I felt it was presented a little bit like these alternative therapies are the keys to your autistic universe. I'm afraid some people will have unrealistic expectations for these therapies.
So, for us… we're going to give the gfcf diet a shot for four months (we had decided this before the conference). Our son is a good eater and will happily eat gfcf stuff so we've really got nothing to lose.
However, doing a Hg chelation? Not on your life!
For the most part we're going to be taking a pretty deliberate approach to intervention, rather than a shotgun-try everything-somethings got to work- type approach that Mrs. Hamilton seemed to have tried.

One last thing… I lied when I said the highlight of the conference was the WEAP study on ABA results. For me the real #1 highlight happened in the alternative therapies talk and it wasn't about alternative therapies! You see, I've read accounts on improvements in children from ABA and other various therapies. However, this was the first time I've ever seen anything on video. It gave me great joy to watch Mrs. Hamilton's son improve, play with his sister, go to the zoo… just be a kid. Her video was very moving for me.
More than ever I feel like my son has a hope and a future!

David DiSanto
dwd@sfu.ca

[Maureen St. Cyr]

I can agree with everything Sabrina and Laurie have already said about "Speaker Number Two", and the only reason I thought I'd chime in here is to philosophize a little on what we can all learn from people like her.

Ms. Hamilton seems to be one of those "no stone unturned" kind of people, the ones who try everything in hopes that the ones that don't work will do no harm, and maybe some of the unproven ones actually will do some good. I suppose if one has unlimited time and money and other resources, there's nothing wrong with that when it comes to the harmless items. Unfortunately, many of the things she espouses are far from harmless, and some are potentially lethal – such as prolonged chelation treatments.

Setting aside the potential for harm for a moment, the biggest problem for we parents is that none of us have unlimited resources; in fact quite the opposite thanks to our having to battle government as well as autism. Every dollar, every minute, every finite resource we expend on snake oil takes away from what we can expend on the only proven treatment for our children. THAT is the real problem with Speaker Number Two and her epic opus collection of "alternate therapy". How much Lovaas-ABA can you do when you're running hither and yon with your child getting chelated and megavitamined and de-caseined and de-glutened and all of the other dubious — okay, I'll say it — crap. If any of this stuff had any value, why is there no data to support it? It's not like the stuff was invented yesterday.

And it should be noted here that while there may be some evidence to thimerosal-containing vaccines being related to at least some of our children's conditions, I haven't seen any evidence that chelating children will reverse that possible effect.

In short, if your child is heavy-metal poisoned, getting rid of that heavy metal is a good idea — but that doesn't make it an autism treatment.

If your child has a food allergy, finding out and ridding their diet of that food is a good idea — but that doesn't make it an autism treatment.

As for wheat turning into opium — I won't even go there.

One last thing, ladies and gentlemen — please remember that anecdotal evidence isn't worth the paper it isn't written on. We would all love to find some magic bullets to solve our children's problems. We all want to feel like we're DOING something, right now, and sometimes the painstaking path of proven Lovaas treatment just takes so long we need some instant gratification. If you decide to give your child extra Vitamin B6 tomorrow, and he or she says three words instead of two the day after, is it the B6? Or is it your Lovaas program paying off in its usual slow but steady way? Methinks the latter, folks. And if you take your data and analyze it and kill off the B6 supplement a few weeks later, methinks you'll have to agree.

I would cheerily cut off my left arm if someone could give me a cure for my darling daughter. Until the magic bullet appears, I'll stick with the program that's been giving her a life for the last four years, one brick at a time.

Tonight Ariel had her casein-gluten-filled crackers and milk before bed, said "Carry me Daddy" when she wanted to go to bed, snuggled her gorgeous little head into my neck and said "I love you Daddy, goodnight" when I tucked her in.

Cheers you all

Avery

[Laurie Guerra]

Hi All,
I too was at the EAP conference and couldn't agree more with what Sabrina said. I talked personally with Dr. Sallows re the "other" treatments put forth by speaker #2 and he said much the same thing that Sabrina said and even more "harshly" than our brilliant Sabrina.
The problem with what speaker #2 said and quoted un-scientific data on, is that new parents,(and we have all been there) will eat up anything that another parent says about how their autistic child is doing so well. If a parent thinks that another person's autistic child was helped by "other" less-expensive treatments than ABA then it is highly likely that they would go the "cheaper" route. Wouldn't you?
I would say to all parents, do what is proven to be effective! You don't have time to experiment with "maybe-treatments" and you certainly don't have time to mess with treatments already proven to be ineffective.
Don't just take my word for it or Sabrina's for that matter. Get informed yourself! Read the report Sabrina is referring to and see for yourself what peer-revued, science thinks about the "OTHER" treatments.
Thanks for listening,
Laurie Romey

[Sabrina Freeman]

To all FEATBC members,

I am compelled to issue a statement, on behalf of FEAT BC, regarding the February 2 conference sponsored by the Early Autism Project (EAP).

I found data presented by Dr. Sallows regarding children in the Lovaas replication study to be very exciting. Particularly striking is the juxtaposition of progress made by ‘treated’ children and children receiving only ‘generic’ special education from their local, public school system. Not surprisingly, the difference between these two groups of children is very large. Significantly, the school-based program for autism intervention ADVERSELY affected children afflicted with autism. FEAT BC applauds this very important autism treatment research work.

The second speaker at the EAP conference spoke about her experience with ABA and an assorted variety of the latest, so-called autism "treatments" (topical amongst groups unconcerned with science). A word of caution to those who are new to the world of autism: with the exception of the second speaker’s reference to Dr. Wakefield's vaccine study, to my knowledge there is NO data available to support any claims made by the second speaker at the conference that have been published in any peer-reviewed, scientific journals. This lack of science is extremely problematic!

I strongly recommend and urge parents who attended the EAP conference who may be thinking of experimenting with these fringe, unsubstantiated treatments, to please do the following:

1. Obtain a copy of the New York State Department of Health Clinical Practice Guidelines report. The report can be purchased locally from Kids Tools, Ph. 604-924-5437. The New York Department of Health publication on autism treatment is the definitive report on the state of the science for autism treatments.

2. Before anyone contemplates experimenting on their child, please make an effort to find even ONE peer-reviewed journal article supporting any of the so-called treatments presented by the second speaker at the conference; find validated, science based evidence that the treatment, in fact, has been shown to improve Autism Spectrum Disorder.

On behalf of the FEAT BC membership, I would like to thank EAP for organizing this valuable conference that contained so much important information. However, it is nevertheless necessary to stress that FEAT BC does not endorse, or in any way support, the position taken by the second speaker at the EAP conference.

Thank you.

Sabrina Freeman, Ph.D.
Executive Director,
FEAT BC

[Christine Minty]

We are looking for 2 energetic, outgoing and creative therapists to join our team. Our 3 1/2 year old son will be starting his new program in mid-February. No experiance necessary. All training is provided. We live in Port Coquitlam (near the Port Mann bridge) on a bus route.

Please call Christine at 604-328-3309 or 604-464-2334 or email at christinem@kiwassa.bc.ca

thanks,
christine
(cameron's mom)

[David & Lori DiSanto]

Hi everyone,

I just joined FEAT and this is my first post.
We are looking into treatment options for our son and from the literature I've been looking at an ABA style treatment certainly seems to be the best (it has had a number of well done clinical trials). However, everyone, including Lovaas, keep referring to his initial study with 19 kids. It's so often quoted that 9 "lost their diagnonis as autistic". However, I don't even see Lovaas making any claims like that for any more recent research. In any replication I've seen of Lovaas' work I seem to see that about 50% see very large improvements but I'm not seeing the same level of improvement that Lovaas describes in his original study.
I'm new at this (we discovered there was a problem 1.5 weeks ago) so there's likely some literature I'm missing. Does anyone know if Lovaas' initial result of ~50% ***LOSING THEIR DIAGNOSIS** has been replicated by others or himself.
Secondly, we've already been in contact with EAP (Vancouver's WEAP) and they've been very helpful. It seems that a lot of people here have gone through WEAP. Have you had the same success in the home-based programs through WEAP as has been demonstrated in the literature?

Lastly, is there any correlation between a kids intitial starting point and the outcome of ABA type intervention? I've been told my 2.8 year old son is pretty high functioning (~200 words, listens to instructions, reasonable eye contact with parents etc.) Does that give us a higher chance of success with ABA type programs?

Sorry for the silly questions. We just don't want to wait around… we really want to hit the ground running so are wanting to make decisions quickly. Any info would be much appreciated.

With thanks,
David
dwd@sfu.ca

[Sabrina Freeman]

Hi all.

I wanted to let everyone know that the conference sponsored by the Early Autism Project still has a few spaces available.

The folks at EAP have told us that any leftover moneys from the conference are going to fund an EAP Parent Resource Library and a Toy Library.

For information on the conference, please contact EAP at (604)473-5011 or visit the conference web site at http://www.wiautism.com/weap.htm

Sabrina

[Diana Sabbagh]

Hi List,
I am looking for a good speech language pathologist with knowledge of sign language and good in communication skill. Please contact me at di20d@yahoo.com
Thanks for any help.
Diana (Jenny's mom)

[Jenny Obando]

Just a short note to let everyone know EAP is having there open house .
Wednesday 9th from 5pm to 8pmt
#103-3991 Henning Dr
Burnaby. BC
For more info call 604-473-5011

Thanks Jenny(Tristen's mom)

[Author]

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