[Maureen St. Cyr]

I have been told that my last post has hurt the feelings of some students and/or UBC alumni. Re-reading what I wrote, I believe the offending phrase was "Unlike the higher institutions of our beloved province, there are others around the continent that are graduating capable people every year." I can see how this can be taken as a slam against those who have graduated from UBC and this was not my intent. My beloved wife has two degrees from UBC and many of my friends graduated from there as well.

My point was that a degree from UBC does not confer on anyone expertise in autism treatment, regardless of what some of its professors would have us believe. Many of the graduates of UBC become fine therapists with appropriate training, and those who leave the province to take training in legitimate Lovaas-ABA education centres can become qualified consultants. Rachel Russell is the obvious example.

Unfortunately, we have too many people in the BC autism industry who use their sheepskins from UBC to legitimize their activities in selling autism "services". The government then passes millions of dollars to the same UBC staff who trained these "service providers" to "evaluate" the "success" of their "programs." This arrangement bears the distinctive aroma of Olympic figure skating judging.

[Maureen St. Cyr]

By the way, I see the italics don't come through in the email delivery — my last post is divided into quotes and responses. It's hard to tell which is which sometimes unless you read it on the web site.

[Maureen St. Cyr]

Stephen wrote:

At the risk of being flamed, I'd like to respond to your observations

Worry not, Stephen, flames are for usenet ;-)

If direct government funding for ABA finally comes through for BC parents, there will be a lot of demand. Where is the extra supply of professionals going to come from?

To paraphrase my mother — this is a problem I can live with. The problem is finding the money while the government keeps violating the rights of our children. Let the Lying Liberals cough up the dough, and we'll find the qualified professionals. The real problem is here severing the cozy little arrangement that sees millions of dollars shoveled off the back end of the truck into the waiting pockets of hacks who wouldn't know autism therapy if it fell from the sky and crushed them flat.

Qualified, experienced ABA professionals are fully employed wherever they are now.

Unlike the higher institutions of our beloved province, there are others around the continent that are graduating capable people every year. WEAP runs its own training program, which I alluded to in an earlier post, which graduates amazing people. When the demand goes up, the supply goes up. Yes, there may be shortfalls in the short term, but economics will rule. For the single-shingle pros like Rachel and Shelley, expansion is a difficult process, because they aren't set up for it. For well-oiled machines like WEAP/EAP, it isn't as big a hurdle. They have the systems for checks and balances and constant supervision of their people, which means they grow constantly from within, as opposed to having to attract competent others to join their team at a higher level.

(ASIDE: Please don't take these comments as me speaking for WEAP, people — these are my evaluations of my observations of them, not some official line. If you want the official line, you'll have to phone them).

Until the supply of ABA professionals catches up with demand, parents are either going to have to do without ABA treatment, or they will seek available people who are less qualified and less experienced than ideal.

Let me make this perfectly clear — you are better off delaying a program by a few months than accepting the so-called services of hacks and pretenders. You are best off methodically and diligently targeting the true professionals and gently kvetching them until you get a consultant out.

The main issue is how do parents differentiate between the ABA professionals available to them? This is a tough question. Even highly intelligent and educated parents do not innately have the tools and knowledge necessary to make an informed decision on this specific question. ABA treatment is complex, and many parents new to ABA are expected to hire the expert first, and then let the expert educate them. But how do they know if their expert really knows his or her stuff?

Okay, Stephen, I promised no flames, but please, let's retire this burnt, shriveled chestnut about parents not being capable of making an informed decision. There are a few simple, effective ways to determine which consultants are worth hiring and which aren't. First, you talk to other parents. That's one of the many things FEAT is for. You get references. You check references. You decide. You try. If the consultant isn't your cup of tea, you move on to another. You are not married to your consultant — unless of course you're one of those lucky EIBI families who are receiving the services of the Friends of MCFD Club — then you are married to them, and you should seek an immediate divorce and move on.

Board Certified Behavior Analyst and Board Certified Associate Behavior Analyst?

Better, I suppose, but again, only one piece of the puzzle. Look, you get sick, you go to the doctor, and if it's something serious, you get a second opinion. Right? Why do you do that? Because any doctor can make a mistake, and because, let's face it, some doctors are okay for treating stomach flu, but you wouldn't want to trust them with brain surgery. Well some Board Certifieds know their consulting, and some don't. My cousin was a great research doctor but he wasn't great in practice. He was mench enough to admit that to himself and he went into research and stopped seeing patients. Some Board Certifieds are great at doing the research, but not as great at the designing and running individual programs.

Years of experience using ABA with children with autism is nice too

As long as it's genuine, perhaps. As long as they were good at it, definitely. As long as they aren't lying through their teeth because some families won a court case so — oops — we better start calling our plumbers "brain surgeons" so we can keep all that nice government money rolling in. The answer to all of this is again talking to families, checking references.

How are parents new to ABA oriented and supported in their quest to establish their ABA program?

If they're lucky, they find FEAT and start talking to parents who've already been through the mill. If they're unlucky, they end up with a lot of government garbage to weed through first.

Ideally there would be an organization that would review qualifications and experience, and certify those ABA professionals that meet the requirements (similar to many other professions)

Yes, absolutely — as long as we're very careful that our beloved government doesn't populate the organization board with their untrained hogs at the trough, and as long as those same hogs don't get grandfathered into the club by virtue of their "experience." This is what happened when the Registered Clinical Counsellor group was set up — if you were a "Counsellor" before the regulations started, you became an automatic member. Some of the "Registered Clinical Counsellors" practicing in this province don't even have BACHELOR's degrees, for dog's sake. The last thing we need is for the unservice providers of B.C. to gain instant "legitimacy" by being included in the club simply because they've been nourished for decades with wasted tax dollars.

As the desk sergeant used to say on Hill Street Blues, "Hey hey! Let's be careful out there."

[Maureen St. Cyr]

David, you kill me. You have more energy than
anyone I know, and all positive. Don't ever
stop. First, I think you meant "we won't let
JUST anyone work with our kids" – correct me
if I'm wrong. Second, I don't know if
"Anonymous" was really implying there was
an "easy" way, or looking for one even if
available. He/she is correct in thinking that all
the attention we are bringing to bear on true
science-based autism treatment is going to
bring more pretenders out of the woodwork. If
our beloved government can paper over the
same tired old nonsense and call it by a new
name and pretend it's treatment, then we
better expect the same tired old non-service
providers will be doing the same thing.

I'm too tired to speak to qualifications tonight –
and no, I'm not speaking for FEAT, just myself,
but the bottom line is David is correct in that
references are important. If a consultant can't
give you three families to phone to check on
their abilities, run the opposite way. As for the
rest, there are qualifications and then there
are qualifications. A special ed degree from
UBC does NOT make one an autism expert,
nor does it qualify one to be an autism
consultant. Sadly, there is no one at our
universities qualified to teach ABA, so the
local grads are unqualified, Q.E.D. If they go
away to one of the recognized schools and
train with the recognized experts, that's a
different story. WEAP has some very stringent
training requirements, and I think they're bang
on. Anyway, too tired for this tonight — more
later. (Hell, I'm not even FUNNY tonight).

[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

[Maureen St. Cyr]

This message was prompted by Terry, but I guess it could apply equally well to all new parents, or at least those new to the world of science-based treatment.

First, the good news: The Auton decision and the hard work and sweat of many FEAT members over the last few years has paid off in knowledge and public awareness, even if it has yet to pay off in equal rights to medically necessary treatment for our kids.

So now, the bad news: The new awareness amongst the public concerning the truth about autism treatment has a lot of the mongers of babysitting services out there running scared. As a result, we see more and more imposters. By this I simply mean people who claim to be delivering proper ABA services (the "Lovaas" word still sticks in their throats), while what they are actually offering is the same old unproven, so-called treatments that were discredited in the Auton decision.

Unfortunately, a new family looking for help is hard-pressed to tell the imposters from the bonafide consultants. The bonafide consultants are those who actually spent years in school and working under the leaders in the field, honing their skills before hanging out shingles. The imposters read a few books on auditory integration and gluten free diets and got a B.A. from UBC's Education department. Who knows, maybe even an M.A. But what's that degree in, and who did they get it under? Does it have anything to do with legitimate autism treatment?

So, to new parents, my words of caution — you have little time enough to help your children without suffering the imposters. Thankfully we now have a few locally-based, properly trained consultants, EAP being the most prominent and best set up, but I understand Rachel Russell is back or about to be, and there are a couple of others. Come to a FEAT meeting and talk to other parents if you don't know which groups are worth talking to — and which should be avoided like the plague that they are.

Now, back to the specific question of EAP's waiting list and whether CBI provides a Lovaas ABA program.

1) I would personally never allow CBI, Gateway, the Laurel Group or anyone associated with the government's now-curtailed but still operational so-called "EIBI" program to get within 45 miles of my child.

2) EAP (the Vancouver operation set up by WEAP) are my daughter's consultants and I have the utmost respect for their training, expertise, style and professionalism. I was not aware until today that they already have a waiting list, but it doesn't surprise me — the very best are always in the highest demand, and the best consultants we've been able to attract to the Vancouver area have always had waiting lists.

I remember a few years ago when we first hired CEE out of San Diego. They also had a six-month waiting list, but I stuck Ariel on it, and while looking around, I kept phoning back and – well – kvetching them. It was less than a month and a half before they were up and getting her program on track.

It's simple really — ethical qualified caring people don't want to be out on a limb. They don't want to tell you, "yeah sure, we'll be there next month" when they're up to capacity and can't be SURE they'll meet that deadline. So they have waiting lists. And they always estimate longer than they really think…just so they won't be disappointing us later.

So here's my recommendation to all and sundry… Sign up for EAP's waiting list. Do the paperwork. Check out the other consultants who service the area and are respected by FEAT members you know and respect. Get on THEIR waiting lists too. And keep phoning and looking for ways to shorten the time. EAP has a waiting list for their local services, but WEAP came out here on workshops before they had their local office. Maybe you can get one of the Wisconsin-based people to come do workshops here until the local office waiting list thins out. If not, and the few other locals are full up too, you can still go with other imported consultants for the time being.

The important thing is not to wait, and not to fill in the wait-list time with bogus treatments that will do your child no good at all.

Oh, and one more thing — waiting lists tend to ebb and flow, because things happen. Two of EAP's families might move to Connecticut tomorrow, and suddenly they'd have two new available spaces. Or more of their staff in Madison might decide that the rain of Vancouver beats the snow of Wisconsin (hee hee). The point is, you never know what that waiting list time is really going to turn out to be, so get on them all — but only the REAL ones.

Avery

Ariel's Dad

[Maureen St. Cyr]

Sabrina, bravo. You are astute and learned and always have something to write worth reading, no matter how long it is .

I would encourage everyone to read Sabrina's words a few times and reflect on them. We all try to do the best for our children, but sometimes in our angst and desperation and frustration, we may be doing exactly the wrong thing.

If I hear the doublespeak "best practices" spoken by our "friends" in government one more time, I will positively shriek. As always, "best practices" to some means "we're going to find some amoral twits with letters after their name to legitimize our gross violation of the rights of children.

We saw this in the Auton case, when the morally bankrupt NDP put their pet UBC "experts" up to defend their useless "treatments". Fortunately, Justice Allan saw through the scam and used — what was it? — six pages of her judgment to talk about how their testimony was obviously biased towards the government and not credible as a result.

Be aware we are seeing and will see it again and again. The same so-called service providers who preached against Lovaas and ABA for years have now suddenly changed their tunes and claim to be ABA experts as they belly up to the EIBI trough.

As we put more and more pressure on government to right the wrongs of the past and present, the BC autism industry are screwing themselves into the ground trying to protect the millions they have sucked out of the system for years, and of course the future millions they want to keep on sucking. Apparently the number of children they irrevocably harm in the process is irrelevant to them.

People, keep vigilant. Don't be fooled by the imposters. Your child deserves nothing but the best, so he or she can be the very best they can be. That means legitimate science-based treatment, not baby-sitting.

Avery
Ariel's Dad

[Maureen St. Cyr]

Lou:

Your current release is acceptable to me, and
I suspect to most FEAT parents. Unfortuntately
what you describe as a "draft" was circulated
extensively, as I have already received three
copies of it myself — one from the Executive
Director of the ASBC, one from the
"momsonthemove" email address, and one
from the Executive Director of the North Shore
Disability Resource Centre.

I wish you luck with your event.

[Maureen St. Cyr]

Lou:

You are new to the game of fighting
government for the rights of our children, and
while I applaud and approve of your zeal in
doing so, you should be careful not to be
launching attacks on the wrong front.

I have read the "Militant Moms" press release
and it is clear that one of the primary purposes
of this "protest" action is to support the current
farce known as the EIBI program. You may say
this is not about "EIBI vs. Individual Funding",
but the simple fact is that this government will
not throw an enormous pile of money at
people who have no expertise in true early
intervention autism treatment, and then supply
parents with individual funding as well. I don't
think there is anyone in FEAT who will argue
about the other points the Militant Moms are
raising, and we can support them on those,
but the idea of resurrecting EIBI from its well
deserved grave is a non-starter here.

As many have pointed out again and again,
individual funding means the money travels
with the child, not with the so-called service
provider. If you want to take your child's
funding and spend it at any of the currently
supported government-sponsored regional
monopolies, that is your choice. But parents
who want proven, medically-necessary,
science-based treatment for their children
must be allowed to take their funding to EAP
or Autism Partnership or any of the other
groups who have real credentials, a real track
record, and the data to back up their results.

I wish the Militant Moms good luck on their
protest against real or potential cuts to the
other services the Ministry provides (or more
truthfully, supplies waiting lists for).
Unfortunately, I must oppose their misguided
attempt to resurrect the faulty, made-for-court,
Orwellian-named EIBI program.

Also, just to correct a couple of your
misconceptions — 1) The cancellation of EIBI
2 was not without alternative announcement.
The government has announced that money
will go into individualized funding instead. (2)
EIBI would not provide therapy for your child —
it would provide the same discredited bag of
crap which the NDP government tried to insist
was therapy, and which were discredited en
masse in court. Your child deserves real
therapy, and the "EIBI" program was as far
from that as a bicycle is from a jumbo jet.

If, despite the press release to the contrary,
you can convince the Militant Moms to remove
the EIBI protest from the package and, as you
say they want, protest instead for an
immediate implementation of Individualized
Funding for ALL children with autism,
REGARDLESS of their age, then you will
probably find FEAT members a more receptive
audience for collaboration.

[Maureen St. Cyr]

I see you posted twice, Dave, so perhaps the second one was a typo, but as far as I am aware, Lisa Wincz has nothing to do with WEAP.

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