[FEAT BC Admin]

This area is for discussions in general topics.

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[Deleted User]

My bad.

You obviously misunderstood my message – or decidedly read your own agenda into it.

I whole heartedly disagree with the idea of culture. I assumed any simpleton could aquire a dictionary and find the word "culture".

Culture: A people’s culture includes their beliefs, rules of behavior, language, rituals, art, technology, styles of dress, ways of producing and cooking food, religion, and political and economic systems.

Obviously this term does not apply. Further, a culture is self sufficient and largely (sorry for the bluntness) most of the Autistic "Culture" at this time is not. Presently this "culture" relys on "our culture" for their sustinance.

Final note: Again I refer to board rules… I assumed they were applicable to everyone, just not those whose mandates we disagree with.

I did not say this was a Dem Rep issue. I said the term is used in the US as a derogatory term for those who think that the gov. should cover ANYONE medically. Both in Canada and the US.

You also failed to mention, unless you are on Medicade (poverty level) the U.S. gov. does NOT cover "all" treatment in the U.S. regardless of IDEA and ADA, and their treatment and funding for medicade families is selective at best.

These laws change by state and county (I do know as I hold dual citizenship). Also, ones personal insurance (at $500 per mo. )may cover what you need but that in itself is selective and you must not mention the word "autistic". In addition, not all treatments are covered.

Further… what the heck does same sex have to do with ABA? I mean really, if you want to make a point talk about free heroine, thats a medical issue…

Rehab 8% success rate
ABA 50%

There is a figure worth printing and worth writing the papers about!

[Isaac]

In reply to Shannon's comments, I would like to say that the fringe issue of "autism acceptance," is not about U.S. Republicans vs. U.S Democrats, or left vs. right. This long-term struggle is about very ill children in Canada being denied the publicly funded Medicare doctors have prescribed for their autism. The U.S., in fact, is light-years ahead of Canada in terms of publicly funded autism treatment … and treatment in that country is guaranteed under U.S. federal law (Canada has much catching up to do in this regard … I invite everyone to 'Google' that … please see IDEA).

What Shannon failed to mention is that only in the U.S. do kids with autism get federal government protection under IDEA and ADA laws. Similar laws for disability protection do not exist for the children living in Canada's "Liberal" mentality. What we have in Canada is pure hypocrisy, wherein government asserts they protect "all" minority Charter rights in Canada … but in fact that only means same-sex marriage rights, not health care rights for the most vulnerable disabled group of children in the country (Google Auton, Supreme Court of Canada).

The phrase "moon-bat," for Canadian purposes, has absolutely nothing to do with U.S. politics. This is a term that simply applies to those home-grown, Canadian "moon-bats" (the very outer fringe) who subscribe to the loony-tunes notion that autism is somehow a culture rather than a widely recognized DSM-IV neurological disorder. No reasonable person would disagree.

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Posted by Shannon Nilson (Nilson) on Thursday, March 17, 2005 – 9:00 pm:

Stephen,

Moonbats you may think is a great phrase but…

After living in the United States for many years, it is a phrase that
most Republican Conservatives use to describe Canadians and Democrats
that want their government to pay for healthcare (of which they call a
"Liberal" mentality). Google for more information.

Therefore, the phrase incites personal ire.
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[David Chan]

hey folks

autism as culture,and just part of diversity
de nile isn't just a river in eygpt

just my two cents

Dave
Mr. P's Dad

[Jenn Ralph]

With regard to "The Mother in Richie's World" article March 13:
It never ceases to amaze me that people don't recognize thier biases and blatant discrimination in mental health issues, especially autism. If we substituted autism for anything that resembled a more apparently physical injury/disease/disability, we as a society would be outraged, and the proper authorities would intervene to ensure the rights of the child. For example, if the child had cancer (and the mother/father/school board /doctors decided to "accept it" and make him "as comfortable as possible" instead of giving him treatment: Or, if the child had diabetes (which once had no treatment), and we all chose to "accept it" and "let it happen" and "that is who he is" and not provide insulin for treatment. Or if the child had an injury that broke a limb and we all said "it must be meant to be", and "any treatment to attempt to fix it would be painful so that must be wrong". The only way I can accept this philosophy in my mind is when Jehovah's Witnesses willingly deprive their dying children of blood transfusions to save their life due to a fundamental religious belief that this is wrong. Even in these cases, parents are completely informed: Your child will live with a transfusion ,and die without one. The problem with depriving autistic children of their treatment is usually uninformed. Until we treat our (as a society) autistic individuals as treatable and deserving of treatment to ameliorate the condition, we are all guilty of discrimination and neglect – of our most vulnerable, and precious, children.

[Deleted User]

Stephen,

Moonbats you may think is a great phrase but…

After living in the United States for many years, it is a phrase that most Republican Conservatives use to describe Canadians and Democrats that want their government to pay for healthcare (of which they call a "Liberal" mentality). Google for more information.

Therefore, the phrase incites personal ire.

As for discussing, as I have said the rules were posted ABA discussion only. This is not ABA or I would gladly and with fervour – as I have done (and been blasted for doing so) post my opinion.

[Stephen Paperman]

In my mind, Shannon, it's real simple-people like the moonbats (great phrase), as well-intentioned as they are, are a grave and clear threat to our children. If enough decision makers can be convinced to espouse this lunacy, then our children will be even less likely to be able to get proper treatment for their medical conditions. Don't forget that the "culture not disease" stupidity is very attractive to government bean counters. "Acceptance" is much cheaper than "treatment."

So yes, feel free to discuss how this kind of delusional behavior is a threat to all children with autism who are struggling to find the money for the only treatment that alleviates their condition. Just don't promote it here and you'll be fine.

[Deleted User]

I would love to respond but discussion rules were clearly posted on the board.

2) Personal attacks are not permissible in the
FEAT BC Discussion Group. We respect all
opinions even if we disagree with them.

ie: Moonbats.

6) The FEAT BC Discussion Group has been
designed to discuss any topic relevant to
home-based A.B.A. programs (including
Government funding and school issues).
When we use the term A.B.A., we mean
discrete-trial-based interventions, also
referred to as "Applied Behaviour Analysis" or
"Lovaas-type" Intensive Behavioural Treatment
for autism and related disorders. This is not
an appropriate forum to discuss the latest,
unscientific 'cure of the day.' If you would like to discuss alternative autism treatment
options, please use the discussion forum
hosted by the Autism Society of B.C, at
http://www.autismbc.ca, or the THE AUTISM
MAIL LIST. To subscribe, send an email
to:listserv@MAELSTROM.STJOHNS.EDU.
Leave the subject line blank and in the body
type SUBSCRIBE AUTISM [firstname
lastname]

Do these apply to this situation or am I able to post my opinion?

[Isaac]

The Victoria Times Colonist ran a sizable autism piece on Sunday (03/13/05), on the story of a parent-advocate, Sheri Marino. The article is copied below.

Marino's central message is this: "Don't force autistic kids to be 'normal,'" and she forcefully maintains that society should change to accommodate her child's proclivities, rather than the other way around – i.e., that effective treatment must help a child afflicted with autism better fit into society.

When reading the Times Colonist article, please keep in mind these two central questions: is it correct for parents to simply "accept" the maladaptive behaviours associated with their child's autism as being somehow a natural part of human diversity; and, importantly, is it even remotely realistic to expect that society will ever change to accommodate those maladaptive behaviours? In my view, the answer to both questions, especially the latter, is clearly no – it's a delusional pipedream, with all the attendant harmful consequences (lifelong institutionalization comes to mind first).

I invite all members of this discussion group to please write letters to the editor of the Times Colonist (http://www.canada.com/victoria/timescolonist/letters.html) and also please share your thoughts on this topic here in the FEAT BC forum.

For background information on the moon-bat "autism-is-a-culture" fringe, this is a recommended read: https://featbc.org/downloads/AutismCultureMyth.pdf

Isaac
Miki's Dad

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Autism

The mother in Richie's world
Times Colonist (Victoria), Page D01, 13-Mar-2005
By Jeff Rud
Eight-year-old Richie stands in front of the television set, focusing on one of the hundreds of carefully organized episodes of Friends he has neatly stacked along the living room wall in the ground-floor James Bay apartment.
As the video flickers across the screen, the boy uses the big toe on his right foot to cue the VCR, searching back and forth for a precise spot on the tape.
Hunting intently for the scene, Richie slaps himself on the back of the neck several times while emitting intermittent shrieks. A few feet away, his mother, Sheri Marino, continues to chat casually with a visitor.
She does not attempt to stop Richie from smacking himself, a form of "self-stimulating" often exhibited by children with autism. Nor does she try to force him to interact with the guest who has come specifically to see him.
This is Marino's philosophy at work. Her son is autistic. That is not changing, now or in the future. She knows Richie will never be normal, but here's the key part: She doesn't expect him to be.
Marino's life has become one all-consuming, often-frustrating mission: To care for her son intuitively and to make the world a more understanding place for children such as Richie by educating others about autism.
"I just let him feel comfortable in his own skin, let him be who he is,'' says the thin, frail-looking woman, her large, sunken green eyes glancing across the living room at her boy.
"I believed from Day One that there was a reason Richie needed to do these things, and so I allowed him to do them and just accepted it as a part of him and part of his learning process.''
Richie is huge for his age, standing five feet tall, weighing 145 pounds, already sporting size eight feet. But size is not what makes the boy so very different from other eight-year-olds.
He is distinguished mainly by his affliction, which, as with most other children at various points along the autism spectrum, leaves him partially trapped in another world.
Richie's mother has worked, almost desperately, for the last seven years to build a bridge to that world, to break down the communication and socialization barriers that isolate her son. She is the boy's therapist, caregiver, friend, teacher, playmate and mom. It is a 24-7 kind of job and that dedication has come at her personal peril. At 40, she has no social life and lives in relative poverty, getting by on about $400 a month for her and Richie after the rent and utilities are paid.
Her style with her child bucks the most popular approach to the disorder, which is the behaviour modification of such children through co-ordinated multi-disciplinary therapy programs known as applied behavioural analysis. This approach uses intensive one-on-one therapies, breaking down required skills to their lowest components, teaching those components, and then chaining them all together.
Instead of trying to modify Richie's behaviour in this fashion, Marino has embraced her child's peculiarities and even used them as a teaching tool. She believes autistic children should be accepted just as they are, that their unusual traits be utilized, not ostracized. She believes these are basic human rights of her son and other children like him.
That's why Marino feels frustrated with both the Greater Victoria School District and the B.C. government, bodies she says are stonewalling her one-woman crusade to provide a more welcoming environment for autistic children in area schools.
Marino has asked the district for permission to make personal presentations on autism in its schools, using a video created by Vic High drama teacher Alan Penty and his students. She wants access to the school district's classrooms to spread her message of acceptance.
But associate superintendent Dave Pitre wants her to first clear the presentation with staff and administration and allow each school to make the decision on whether her material is appropriate.
Marino doesn't think individual schools should have that choice. She has already initiated a complaint with the B.C. Human Rights Tribunal, saying not allowing her presentation district-wide exposure amounts to discrimination against all autistic students.
"My understanding is she wants direct access to kids and I'm saying I can't give direct access to kids,'' Pitre says. "That's not the way we work in this district. We rely on our principals to make decisions on what's best for their communities.
"We've attempted to be co-operative. We've attempted to be understanding. You know, I've told her that I would continue to work with her.''
Marino is also frustrated with the provincial government. Early Childhood Development Minister of State Linda Reid attended a classroom presentation Marino gave in December and Marino had high hopes that the ministry would get behind the program provincewide. That hasn't panned out, although Reid says she's open to proposals.
Like many parents of special-needs children, Marino has learned to navigate her way through the corridors of power for the good of her child. She may only have a Grade 10 equivalency, but she is also fiercely determined and virtually impossible to ignore. She works the phone like a cold-call saleswoman, relentlessly pursuing any opportunity to advocate for her son or autism awareness. She is well-known in a several ministry offices in the B.C. legislature and she has written letters to the prime minister.
Her efforts started simply out of trying to help her son. When Richie was younger, she took him around their James Bay neighbourhood, introducing him to people who worked in the grocery store and the bank. She told them about autism and about Richie, hoping that every eye she opened to the affliction would be another mind opened as well.
That campaign has now spread to promoting widespread awareness of autism. Marino writes letters to the editor, guest articles in community newspapers and even poetry on the subject. And once she has the ear of a government department, school board official or a reporter, she doesn't stop calling.
"As most people would tell you,'' she says, "I'm the nicest, politest, pain in the butt you'll ever meet.''
Pain or not, Marino has managed through that sheer persistence to at least make more people think about autism.
"I don't know another parent in all my years of doing this who has kind of stuck her nose out there. She's not afraid of hearing no,'' says Julie Lafontaine, a provincial government-funded consultant who has worked with Sheri and Richie for the past three years.
"Frankly, I admire her advocacy,'' adds Reid, the provincial early childhood development minister of state. "Any kid needs a champion in their corner and a child with special needs needs a really huge champion, no question about that.''
Marino is certainly that for Richie, although her insistence on playing the lead role in his treatment has at times alienated her from professionals and educators who have tried to help. Lafontaine, employed by the Mainstream Association for Proactive Community Living, fills only an advisory role for Marino.
Richie and his mom made an attempt at school three years ago, but that ended when Marino clashed with school officials over the way the boy was handled. He is now home-schooled. The decisions on Richie's care and education are completely up to the mom.
Autism Society of B.C. president Michael Lewis says his organization certainly wouldn't recommend Marino's singular approach for everyone.
"The thing that worries me is people that just go off and do their own thing, it might work but it might not work,'' Lewis says. "I guess that's the flag I would raise … The reason it's not common or recommended is that if you had cancer you wouldn't go on the Internet and decide how to treat yourself.''
Nevertheless, if Marino's approach is working for Richie, Lewis says that's the important thing.
"What ideally would happen is that she would link up with somebody with the expertise to sort of document her program because God knows breakthroughs come from strange places."
Marino concedes that her all-out, hands-on approach would not work for many parents, who simply wouldn't have the time. But she believes many others might follow her lead if the federal government would provide funding for them to serve as their children's full-time caregivers and therapists. This is her latest advocacy project, but not likely her last.
While success as an autism advocate has been mixed, Marino's intuitive approach with Richie has paid some clear dividends.
Three years ago, the boy would make no eye contact with guests, let alone speak with them. If he interacted with visitors it was usually only to hand them their shoes, to deliver an unspoken message: Come back when you can't stay so long.
These days, a guest might get a smile, a few words, a joke, maybe even a rendition of Twinkle, Twinkle, Little Star. Richie might show off his impressive mathematical ability, asking for a visitor's age and instantly spitting out his birthdate in return. Or not. This small apartment is Richie's world. His mother just lives in it. And the rest of us are merely visiting.
People with autism often have what are known as "perservations." These are fixations, interests or special talents in one area on which the child focuses to an unusual degree, often to distraction.
Since he was three, Richie's main perservation has been country music. He owns more than 1,000 CDs and tapes and can tell you, when the mood strikes him, who wrote each and every song. His mother believes he will be a country star one day. Two things are certain: Richie has an unusual love for the music and Sheri has used that love to teach her son life skills.
Richie learned to brush his teeth by counting country stars. "One Shania Twain, Two Tim McGraw,'' his mom recites. "I'd name off 32 country people, one for each tooth brushed. We'd make a continual game out of it.''
Later, when she had trouble getting Richie to learn how to write his own name, she reminded him that he would never be able to sign autographs for fans unless he did. That closed the deal.
"Instead of trying to force him to see my world, I tried to put myself into his world and understand why he does the things that he does,'' she says.
She is not the first to take this approach with an autistic child — it has been around in some form since the 1970s — but she is certainly in the minority.
"I think it's a good thing,'' says Lafontaine. "It's like an accepting thing — like let's just go with it instead of working against it. Richie kind of sets the tone to what he'll be learning.''
Everything Marino has taught her son has been based on his interests. She has not forced him into anything. It's an approach that takes unlimited patience and time. And it's an approach that has been all-consuming for the highly spiritual mother who has survived both a rare form of cancer and emphysema.
Helping with the workload lately has been Richie's father, Richard Leitner, who reunited with Marino at the end of December after a four-year separation. Leitner has been supportive of her approach with Richie and, even during their time apart, visited the boy daily.
"There are some other families that have her approach,'' Lafontaine says. "But there are more parents out there that buy into this: 'Well, they have to be normal. They have to be like typical kids, we can't let them do bizarre behaviour in a restaurant.' Whereas Sheri is like: 'Well, this is who he is, this is what he does, and if you don't like it, don't look.' ''
Marino says that trying to force the autistic child to conform is wrong, that such children can no more alter themselves to be "normal" than a dog can become a cat.
"Autistic people are asked to imitate normal people,'' Marino says with a sigh, "and they are judged that way.''
Although Lafontaine would like to see Richie attend school and interact more with other children, she says Marino's approach with Ritchie is clearly working.
"Richie has made good progress,'' Lafontaine says. "At first when I saw him, he would primarily just talk when he wanted something. You know: 'I want juice, I want milk' — that kind of stuff. Now you can have a conversation with him. The eye contact is there.''
Where once a visit by Lafontaine would result in Richie handing her her shoes right away or throwing a tantrum, he now enjoys her visits and is more subtle about when he wants her to leave.
During a recent visit, as Richie departed with his father to have lunch at McDonald's, he told Lafontaine that he didn't want her there when he returned.
"See you not later,'' Richie said.
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[FEAT BC Admin]

This is to advise that upgrade work has been completed for the FEAT BC discussion board. Posting and e-mail notification are enabled.

Thank you.

Board admin.

[FEAT BC Admin]

Board Admin. service interruption advisory
for FEAT-BC chat board members
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Hello Everyone,

This is to advise that the FEAT BC discussion
forum will be temporarily unavailable for
posting messages during the afternoon and
evening of Tuesday, March 15.

We'll make every effort to keep the service
interruption to a minimum, and expect the
necessary upgrade work will be completed by
Wednesday, March 16.

Thank you.

Isaac
Volunteer Board Admin.

[Author]

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