[Jemma Lee]

WALK/RUN NOW FOR AUTISM

Recently I have heard a lot of people talk about the upcoming "Walk/Run Now for Autism" event, organized by Autism Speaks. On the surface it seems to a good thing, but I am not so excited about it. For those who don't know, Autism Speaks Canada is very different from their America counterpart.

Before you participate in the event, may be you should find out what Autism Speaks Canada has done for us. I'll give you a couple of examples:

1. When they held a similar event in Edmonton, they invited Mike Lake as a guest of honour. Mike Lake is the MP who has done everything within his power to destroy our chances of getting Medicare coverage for autism. Despite having an autistic son himself, he works against us just to make his boss happy.

2. During the Senate Hearings into funding for the treatment of autism, the Executive Director of Autism Speaks Canada was asked if she supported an amendment to the Canada Health Act to include autism treatment in Medicare. She actually said NO.

If supporting this event means raising more money to pay the Executive Director to make friends with Mike Lake, I am not sure it's the best thing for our children.

Jemma

[Jemma Lee]

Hi Khiat,

I assume it's Supported Child Development you're talking about. You can look up the Burnaby boss in here:

http://www.scdp.bc.ca/SCD%20Program%20Locations.htm

Please read Sabrina's advice at the top of our Government Topics page. Take detailed minutes during every meeting or phone call, and send a copy to them.

You may want to leave your email address, in case anyone has advice that they want to send in private.

Jemma

[Jemma Lee]

Hi Khiat,

Writing to your MLA may help them get more funding, which will help the social worker get a higher salary. I am not sure it will help your son.

You should be writing to the social worker's boss.

Which city are you in?

Jemma

[Jemma Lee]

Hi Stella,

Thanks for posting the link. I was quite amused by the news article.

I finally realize what we've been missing. All it takes is a building to make our province "clearly a national if not international leader in autism services, autism research, autism intervention." All these years, we should have been designing a building instead of going to court with the provincial government.

I guess I am not the type of person to come up with the "vision" of a beautiful new building, something tangible that the politicians can show off. I am sure that once they enter the building, they will suddenly realize what is adequate and proven treatment. I can then drop off my kid every morning and stop worrying. I've been way too focussed on boring ideas like adequate individualized funding.

Mr. Cocchia said, "now if somebody else had a proposal and they thought that this money should all go into one specific form of training, then they should put together that proposal and present it to the government." Now there's an idea. Let's present something to the government! I'm sure our politicians are very reasonable people. May be we can try something like "Medicare for autism"?

Jemma

*****

Autism centre one step closer

Couple asked to put together proposal for long-held vision

Catherine Rolfsen
Vancouver Sun

Friday, August 01, 2008

VANCOUVER – A power couple is crafting a pitch to the provincial government for an autism centre to help families such as theirs that are dealing with the disorder.

Sergio Cocchia and Wendy Lisogar-Cocchia – who own Vancouver's Century Plaza Hotel and Spa, and have a 13-year-old son with autism – envision an autism research and support centre that could cost up to $34 million to build.

"What we hope is that, when you get this diagnosis, there's a place that you can go, where you could access all of the material, the professionals, the treatment plans, and you could prepare yourself for the challenge that's ahead of you," said Sergio Cocchia.

For years, the Cocchias have been speaking with Premier Gordon Campbell about the possibility of a centre.

Their dream started to materialize in the 2008 throne speech, when the province committed to developing a facility to "provide a residential environment for children with autism and create a national hub for research and a centre for parental supports."

After the speech, Campbell told The Vancouver Sun he asked the Cocchias to put together a proposal and a business plan.

Minister of Children and Family Development Tom Christensen said Thursday the government has "talked notionally about a commitment of up to $20 million but we really don't know yet what it will take."

Christensen said the Cocchias have been asked to consult with autism experts and families about what the centre should look like.

Last week, the Cocchias invited experts and stakeholders to have their say. Cocchia said a website is also planned to allow everyone to weigh in. He said early consultation suggests the centre might be most useful in a location outside Metro Vancouver.

Preliminary estimates peg the cost of building the centre at $34 million, Cocchia said, meaning "aggressive fundraising" will be needed.

Not everyone is keen on the Cocchias' vision. Some stakeholders said that if government money is available, it should go toward programs and services rather than a building.

But Daniel Weeks, chair of Simon Fraser University's department of psychology, called the proposed centre "an incredibly exciting development."

"If this all works out as I understand it will, I think B.C. will be clearly a national if not international leader in autism services, autism research, autism intervention," he said.

Weeks said the facility could help attract a "world-class" candidate to fill the newly formed position of national chair in autism research and intervention at SFU.

Clair Schuman, executive director of Autism Community Training, said a preliminary consultation with her advisory council and other members of the autism community suggested the idea of a centre "had promise."

But University of B.C. autism expert Pat Mirenda questioned why there was no consultation with the autism community before the couple was asked to develop the proposal.

And although she believes the Cocchias are well-intentioned, she's not convinced a centre is what's needed.

"If we have $20 million, why would we spend it on a building and not just increase services or training?" she asked.

Moms on the Move, a network for families coping with autism and special needs, said an informal survey conducted over the last week revealed misgivings about spending $20 million on a new building instead of programs and services.

Of approximately 300 respondents, nearly two-thirds thought the money should be shared to benefit those with developmental disabilities other than autism.

Michael Lewis, president of the Autism Society of B.C. board and vice president of the Autism Society of Canada, said at this point it's unclear what the purpose of a new centre would be.

He said he hasn't heard much enthusiasm for the idea and emphasized the centre shouldn't replicate existing services.

Cocchia said such criticism is "frustrating."

"We have this vision of a centre. We think it's a good vision. We think that there's a lot of support for it," he said. "Now if somebody else had a proposal [and] they thought that this money should all go into one specific form of training, then they should put together that proposal and present it to the government."

crolfsen@vancouversun.com

[Jemma Lee]

Regarding the provincial autism centre:

I am less concerned about the $20 million being wasted, since bigger amounts get wasted all the time and that's just what governments do. I am more concerned about this project bringing more harm to our children.

For all I know, this may be another attempt to replace individualized funding. I would much rather see families continue to get paid partially to run proper ABA programs, than to be forced to place their children into the hands of government groupies.

It is also possible that this autism centre is the autism school that some government groupies have been trying to open. I worry about this becoming a replacement for inclusive education.

I have not seen the list of board members, but I can give you a few names (of extremely dishonest people) and bet you a million dollars that they are involved.

Jemma

[Jemma Lee]

Does anyone know what the heck this is about?

—–Original Message—–
From: Dawn Steele [mailto:dawns@telus.net]
Sent: Friday, July 25, 2008 3:28 PM
To: Moms on the Move
Subject: Survey re $20 million in new Provincial Autism Funding

PLEASE COMPLETE THIS QUICK SURVEY & PASS IT ON TO OTHERS IN YOUR NETWORKS

We were invited to a private meeting held in Vancouver July 24 to hear about plans to build a new provincial autism centre in the Lower Mainland with $20 million in provincial funding promised by Premier Gordon Campbell. Varying views and questions were noted about the proposal under development. We are seeking community feedback so that we can offer advice on the best possible use of these public funds.

Please assist us by taking a moment to complete the brief Web survey at the following link:

http://www.surveymonkey.com/s.aspx?sm=QzBrorcLvmzRTARYewTyIw_3d_3d

*****

[Jemma Lee]

To those who are not aware: This weighted-blanket crap is a part of the very popular brand of snake oil called Sensory Integration Therapy.

Some occupational therapists love sensory treatment because it allows them to explain (and supposedly to treat) all of a child's behaviours without any knowledge of behavioural science. Some under-qualified behaviour consultants resort to it for the same reason. Since sensory issues are not easily observable, they are an easy "catch all" for anything that the treatment provider fails to explain.

I am not saying that our children do not have sensory issues. What I am saying is there is no scientific evidence to support claims about Sensory Integration and other types of sensory treatment. The smart thing to do is to try behavioural treatment first.

When the scientifically proven methods fail, then you can try whatever you want, but please use some common sense and keep the child's safety in mind.

Jemma

[Jemma Lee]

I really wish the media would stop reinforcing the attention-seeking behaviour of these "neurodiversity" people. The article says opponents call these people "deluded", but that's just half the picture. Many of them want the fame and fortune of Temple Grandin but are not nearly as clever, so they resort to any method imaginable, often at the expense of truly disabled children. I am so sick and tired of this bull crap.

Jemma

[Jemma Lee]

The fact that the government has invited Michelle Dawson to the symposium really adds insult to injury. I can write a book on people like her, but so much has already been written by others. Some excerpts I have previously posted here seem to be removed, but here are some new ones from an article by Thomas A. McKean:

***
It seems that today anyone can make a claim they have autism and it will be believed. These people will get a slot at a conference and they will get up there and say things that are dangerous to kids with autism and their families, and the parents will take notes and eat it up.

We have young people who have no documentation of a diagnosis being accepted as autistic and who are accepted to speak at these conferences to speak on behalf of those who cannot speak for themselves.

What they are saying is that ABA is wrong, they are saying that seeking a cure is wrong, and they are saying that we need to allow the children to be themselves and to respect them for who they are.

***
More than one speaker currently on the circuit is “self diagnosed.” This is extremely dangerous and they should not be allowed to speak until they have documentation proving a valid diagnosis by a reputable doctor.

***
The reason you need to be asking these questions, the reason we need to start cracking down and being harder on speakers is because these people are up there representing the children of the parents who came to hear them speak. There cannot be accurate or valid representation if they have not experienced what a lot of these kids have.

***

[Jemma Lee]

Hi Everyone,

Many of us have doubted the usefulness of the Wechsler test for measuring treatment progress, since the test is so heavily language-dependent. I have seen my own child lose points on many questions that I know he should be able to answer. I suspect the results of the Lovaas study would be more impressive if a better test was used.

The researcher Laurent Mottron recommends the Raven test, but I think his research has been distorted by a dishonest research partner. Another researcher Peter Tellegen says:

"Nonverbal alternatives for intelligence assessment like Raven's Progressive Matrices (Raven, Court & Raven, 1983) and the Test Of Nonverbal Intelligence (TONI-2; Brown, Sherbenou & Johnson, 1990) have the drawback that they are unidimensional tests which do not allow for generalizations to a broad area of intelligence."

Would you please share your experience as to what testing has been useful for your child?

Thanks.

Jemma

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