Thursday, November 06, 2008

Not So Distinct: Quebec's Long Waits For Autism Treatment


Ontario is not the only Canadian province with lengthy waiting lists for ABA treatment for autistic children. Quebec, the home province of determined anti-ABA advocates Dr. Laurent Mottron, and his colleague Michelle Dawson, is also marked by lengthy waiting lists that frustrate the efforts of parents to seek evidence based, effective, ABA treatment for their autistic children.

In Long waits for autism services: parents Nav Pall, of Montreal's West Island paper the Chronicle, reports on two parents who had to fight lengthy waiting lists to get ABA treatment for their autistic children. Pall also reports on Quebec's arbitrary age 6 cut off for ABA treatment for autistic children:

"Once ABA therapy stops and kids enter school, the WMRC offers several other services such as anger management, respite and more social skills groups, but at reduced hours.

“We stay implicated, we see how they are doing in school,” said Moxness. “The ages between two and seven are the best time for ABA. Six years old was chosen as the cut off year because it coincides with kids entering schools. The decision was more administrative than clinical.”


Nevertheless, the Oliver’s and Mason’s are concerned about their son’s future.
“The cut off (from ABA) at six years old is ridiculous,” said Mason. “ABA costs $100 to $150 per hour, right now I can’t afford it, so I’m taking full advantage.” "

With long waiting lists and an arbitrary age 6 cut off for provision of ABA services Quebec has much in common with its neighbor Ontario.

When it comes to frustrating the efforts of parents to obtain evidence based, effective treatment for their autistic children, Quebec is not quite the distinct society it purports to be.




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Wednesday, November 05, 2008

Nova Scotia Refuses To Help All Autistic Children

Despite calls for expansion of its successful autism early intervention program the government of Nova Scotia is refusing to expand the program to help those autistic children who are excluded from treatment under Nova Scotia's immoral lottery system for assigning spaces in the program. When asked by Liberal MLA Greg Gavine "Why isn’t the government committing this money to help families like Jim Young and their children coping with autism?" Health Minister Chris d’Entremont responded that that there’s lots of competition for money.

Apparently NS Health Minister d'Entremeont subscribes to the "Do Nothing For Autistic Children" principles of former federal Health Minister Tony Clement.




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Tuesday, November 04, 2008

Conor Gets Dad Out On The Trail Again















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The Best of Charles LeBlanc # 1 - David Suzuki


(Photo by Charles LeBlanc)

My friend Charles LeBlanc offers some good photos on his blog site, from time to time. Above is my favorite shot by Charles, a picture of David Suzuki speaking at the United Church in downtown Fredericton. The church is literally filled to the rafters. I am a long time admirer of Mr. Suzuki's work and was particularly pleased with his 1996 production about autism for the Nature of Things on CBC:

1996

The Child Who Couldn't Play (Autism) - a program that closely investigated autism and explored some avenues for treatment for young children with this condition. The program generated a substantial amount of interest from viewers - especially from parents of autistic children, eager for more information and relieved that the subject of autism was entering the public forum.




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History

History is being made today.

Our good neighbors in the United States, and they are good neighbors, will finish voting today to elect their President and Vice President. The obvious historical element is that an African American is the Presidential nominee of one of the two major American political parties and a woman is the Vice Presidential nominee of the other party.

But history is also being made in a different sense. As a long time observer of American politics, living an hours drive from the American border and inundated by American media I watched with horror the events of 911. I was proud of my fellow Canadians who took in to their homes American travelers stranded when all flights across the US were ordered stopped that day. I was initially impressed with President Bush when he stood with the firefighters on the rubble of the World Trade Center towers and visibly displayed the courage that would help inspire everyone affected. I was equally impressed when he organized and spoke at an interdenominational gathering of religious leaders and helped restore calm, compassion and common sense which appeared to be disappearing in the United States.

Ultimately though I became dismayed by the militaristic take over of the American consciousness and way of life. Going after Al Qaeda in Afghanistan seemed like the right thing to do given the Al Qaeda perpetration of events on 911. Their Taliban hosts in Afghanistan also seemed like legitimate opponents and if Bin Laden took refuge in Pakistan then I believe it was, and still is, legitimate for the Americans to go after him and take him out. But the war in Iraq and the patently obvious falsehoods perpetrated by senior government officials, including President George W. Bush, to justify the invasion of Iraq, a country that had not attacked the US was extremely disturbing. So too has been the steady erosion of American civil liberties and the denial of legal rights to foreign visitors to the United States.

In 2002 Barack Obama, a young state Senator in Illinois spoke against the impending Iraq war at a time when few politicians had the courage to speak candidly about the dishonesty being perpetrated to justify the invasion of Iraq. His speech was, as described by many, stirring, and I have posted it here following my comments. The speech, as so many of his speeches, and debates and actions demonstrate a person of judgment and principle. Mr. Obama is a man of calm cool reflection who can rise to the occasion and stir people based on principle, on hope, not on the hatred and fear mongering tolerated and exploited by his opponents.

Obama impressed me when he defeated Senator Hillary Clinton, an outstanding figure in her own right, and sought to mend bridges broken during the primaries once he prevailed. He impressed me when he picked Sentor Biden as his running mate, not to gain electoral votes which the pick did not do, but to ensure that an experienced, knowledgeable voice, that would not hesitate to speak truth to power balanced the ticket and would be ready in the horrific event, that it was necessary, to assume the presidency.

Senator Obama impressed again with his calm, cool and collected response to the financial crisis that exploded onto the world's economic scene and dramatically altered the course of the US election. His response was in sharp contrast to the bizarre, quixotic response by Senator McCain, canceling media appointments, rushing to Washington, threatening a no show at the impending Presidential debate and pretending that he had any significant role to play in the hammering out of the bailout agreement reached in the US Congress. To paraphrase the US presidential campaign cliche I was very concerned that the erratic Senator McCain would be the one taking that 3 a.m. phone call in the White House with his finger hovering anxiously over the nuclear button.

My high regard for Senator Obama, hopefully President Elect Obama, has nothing to do with autism about which I usually write. My preference is based largely on the issues set out above. As a Canadian I do not vote in the US elections notwithstanding the huge impact such political decisions by our neighbors have upon Canadians. If I could vote though, beyond any doubt, I would be voting for Senator Barack Obama for President and Senator Biden for Vice President. I truly believe the world will be the better for it if they prevail as the incredible odyssey of this American Presidential election campaign draws to an end.

I believe the Obama-Biden team will win today. The election of the first African American president of the United States will make history. But history will also be made with the beginning of the end of the rampant, out of control, militarism that 911 allowed to occur, the takeover of the American economy, society and consciousness by unscrupulous corporate war profiteers and their allies in the US Congress and administration will have begun.

The 2002 speech by then Illinois state Senator Barack Obama opposing the Iraq invasion sought by President George Bush, Vice President Richard Cheney and Arizona Senator John McCain follows:

"I stand before you as someone who is not opposed to war in all circumstances. The Civil War was one of the bloodiest in history, and yet it was only through the crucible of the sword, the sacrifice of multitudes, that we could begin to perfect this union and drive the scourge of slavery from our soil.

I Don't Oppose All Wars

I don't oppose all wars. My grandfather signed up for a war the day after Pearl Harbor was bombed, fought in Patton's army. He fought in the name of a larger freedom, part of that arsenal of democracy that triumphed over evil.

I don't oppose all wars. After September 11, after witnessing the carnage and destruction, the dust and the tears, I supported this administration's pledge to hunt down and root out those who would slaughter innocents in the name of intolerance, and I would willingly take up arms myself to prevent such tragedy from happening again.

Opposed to Dumb, Rash Wars

I don't oppose all wars. What I am opposed to is a dumb war. What I am opposed to is a rash war. What I am opposed to is the cynical attempt by Richard Perle and Paul Wolfowitz and other armchair, weekend warriors in this administration to shove their own ideological agendas down our throats, irrespective of the costs in lives lost and in hardships borne.

What I am opposed to is the attempt by political hacks like Karl Rove to distract us from a rise in the uninsured, a rise in the poverty rate, a drop in the median income, to distract us from corporate scandals and a stock market that has just gone through the worst month since the Great Depression.

That's what I'm opposed to. A dumb war. A rash war. A war based not on reason but on passion, not on principle but on politics.

On Saddam Hussein

Now let me be clear: I suffer no illusions about Saddam Hussein. He is a brutal man. A ruthless man. A man who butchers his own people to secure his own power.... The world, and the Iraqi people, would be better off without him.

But I also know that Saddam poses no imminent and direct threat to the United States, or to his neighbors...and that in concert with the international community he can be contained until, in the way of all petty dictators, he falls away into the dustbin of history.

I know that even a successful war against Iraq will require a U.S. occupation of undetermined length, at undetermined cost, with undetermined consequences.

I know that an invasion of Iraq without a clear rationale and without strong international support will only fan the flames of the Middle East, and encourage the worst, rather than best, impulses of the Arab world, and strengthen the recruitment arm of al-Qaeda.

I am not opposed to all wars. I'm opposed to dumb wars. So for those of us who seek a more just and secure world for our children, let us send a clear message to the president.

You Want a Fight, President Bush?

You want a fight, President Bush? Let's finish the fight with Bin Laden and al-Qaeda, through effective, coordinated intelligence, and a shutting down of the financial networks that support terrorism, and a homeland security program that involves more than color-coded warnings.

You want a fight, President Bush? Let's fight to make sure that...we vigorously enforce a nonproliferation treaty, and that former enemies and current allies like Russia safeguard and ultimately eliminate their stores of nuclear material, and that nations like Pakistan and India never use the terrible weapons already in their possession, and that the arms merchants in our own country stop feeding the countless wars that rage across the globe.

You want a fight, President Bush? Let's fight to make sure our so-called allies in the Middle East, the Saudis and the Egyptians, stop oppressing their own people, and suppressing dissent, and tolerating corruption and inequality, and mismanaging their economies so that their youth grow up without education, without prospects, without hope, the ready recruits of terrorist cells.

You want a fight, President Bush? Let's fight to wean ourselves off Middle East oil through an energy policy that doesn't simply serve the interests of Exxon and Mobil.

Those are the battles that we need to fight. Those are the battles that we willingly join. The battles against ignorance and intolerance. Corruption and greed. Poverty and despair."





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Sunday, November 02, 2008

Autism's Outcasts

Parents like Heather R understand that autism is not always Positively Autistic. Her son is one of autism's outcasts:

I have a son who is 14 and severely autistic as well. I have had workers in my home with him for 2 years now. They told me it was supposed to be only until we could get him some help. He needs an assessment and a medication overhaul where he went completely out of hand and uncontrollable during puberty. No hospital in n.b can take him. Moncton refused him. I.W.K has been saying for the last year and a half they have no psychologist. I see a psychologist once every six weeks or so and we try something else. One of the medications made him bust through windows another gave him seizures. Right now we have between 10-15 restraints were the workers hold him for from 15-40 minutes of temper tantrums. He wears a helmet so he won't poke out his eyes. Hockey shoulder pads so he won’t bite his arm to shreds. He was bad when the workers first came with severe wounds up an down his arms but the hospital said it was no place for him, so we treated him at home. He also wears towels on his hands to prevent pinching and towels on his legs. My little boy is in crisis and we have no hospital that can even evaluate him. I have been waiting for help for 2 years, how much more can we wait. Sure they'll put him in a house if I can't stand it anymore but they would get him treatment.


There is in the autism world a large number of autistic persons, like Heather R's son, who are not featured on CBC, CNN or most of the mainstream media with its generally shallow treatment of what are now referred to as the Autism Spectrum of Disorders. (One major exception is the Vancouver Sun with its representative and responsible series Faces of Autism). These autistic persons are Low Functioning, suffer from cognitive impairment, mental retardation or any other term which may be deemed politically correct and many of them live their lives well away from the cameras or public attention. They are not featured in splashy CBC and CNN features. They are autism's outcasts. For them, life is not always Positively Autistic.

Media Exclusion of Autism's Outcasts

The CBC has recently featured, in "Positively Autistic", a handful of persons with High Functioning Autism and Aspergers, very intelligent, articulate individuals who purport to speak for the many Low Functioning Autistic persons even while expressing disdain for the terms High Functioning and Low Functioning. (High Functioning and Low Functioning are terms used throughout the professional studies of Dr. Laurent Mottron also featured on the CBC's misleading effort "Positively Autistic". Dr. Mottron himself has worked with and studied High Functioning Autistic persons and persons with Aspergers).

The CBC, following a path already well travelled by CNN, has featured Michelle Dawson, Ari Ne'eman, Amanda Baggs and other high functioning autistic persons who use the "royal we" in declaring that autism is not a disorder but simply a "natural variation". By this ideology autistic disorders should be celebrated not cured and autistic people do not want to be cured. Attempts to describe the differences between these high profile celebrity autistic persons and the low functioning autistic persons who have difficulty understanding the world are at risk for their lives, and will end up living in the care of others long after parents are deceased is disparaged. The reality of the less fortunate is abandoned for the ideology and agendas of the more fortunate. As for the media itself, it doesn't make for feel good viewing material to see the harsher realities of low functioning autistic persons who live in institutional care or engage in self injurious behavior.

If Peter Mansbridge and the CBC want to practice real journalism they should show the whole balanced picture of autism. For many autism is not "Positively Autistic". For many autistic persons life is not so pretty. The CBC should visit the adult autistics living on hospital wards, or in institutions where they eke out a bleak existence far from the media spotlight enjoyed by the celebrity high functioning autistic persons featured on Positively Autistic. The CBC should talk to the parents who can no longer care fore their adult autistic children and have to give them up to the state.

Autism's Muddled Terminology

The word Autism is used loosely on the internet and mainstream media, and sometimes in scholarly journals and serious professional studies, to refer to any of the disorders listed as Pervasive Developmental Disorders, in the DSM-IV, the most recent edition of the Diagnostic and Statistical Manual of the American Psychiatric Association. The public, and professionals, often refer to the PDD's as Autism Spectrum Disorders. People with any one of the distinct PDD disorders are often referred to as "autistic". Unfortunately this lumping together of various PDD or autism disorders, and of high functioning and low functioning "autistic" persons, can have negative impacts on the value of research concerning PDD's.

It can also have a negative impact on public awareness of, and understanding of, lower functioning persons with Autistic Disorders, particularly those with serious cognitive deficits. This lumping together has also resulted in some High Functioning Autistic persons (to borrow an expression found in many studies by Dr. Laurent Mottron), and persons with Asperger's Disorder, (Ari Ne'eman founder of the Autism Self Advocacy Network, acutally has an Aspergers diagnosis) purporting to speak on behalf of ALL persons with PDD's, including those lower functioning persons with serious cognitive deficits whose life realities are so drastically different from their own. These "autism self advocates" actually interfere with the attempts of parents and caregivers to obtain services for their own children and adults who can not speak for themselves. The high functioning "autism" self advocates also actively obscure in the mainstream media the very existence of lower functioning autistic persons, persons with serious cognitive impairments - autism's outcasts.

Autism Research - Exclusion of Lower Functioning Autistic Subjects

In The face of Autism research as reflected in the IMFAR looking glass, Research in Autism Spectrum Disorders 2 (2008) 385–394, authors James M. Bebko, Jessica H. Schroeder, Jonathan A. Weiss, Kerry Wells, Kristen McFee and Gayle M. Goldstein reviewed the abstracts from a major autism conference (IMFAR) from 2004 to 2006. They found an increase in the proportion of studies with preschool or infant participants. There was also a decrease in studies using lower functioning samples, and an increase in studies using Mixed samples. The use of control groups generally decreased, and the use of cognitively impaired comparison groups remained low:

In terms of the functioning level of participants, research in autism has tended to focus in recent years on the higher functioning range of autism (HFA) or those with Asperger Syndrome (AS). According to a meta-analysis of cognitive and behavioral studies by Mottron (2004), over 75% of published studies on autism in 1999–2002 were comprised of participants with no identified cognitive delay. Such focus limits the generalizability of findings, as a large portion of individuals with autism and autism spectrum disorders have associated cognitive impairments,with estimates ranging from 40% to 70% of the population (Fombonne, 2005; LaMalfa, Lassi, Bertelli, Salvini & Placidi, 2004). Clearly a more balanced range of studies, with appropriate comparison groups is necessary.

....

Associated with this profile in the use of comparison groups in studies presented during this time period is an apparent decreasing representation of individuals with low or moderate intellectual impairments in the studies. One risk of such a trend is that our understanding of autism may become biased to the higher end of the functioning continuum. It is important that research continue to include individuals with cognitive impairments to ensure that our knowledge based on etiology, assessment, and intervention continues to expand across the entire range of expression of the disorder.

The authors' emphasis on the importance of inclusion of autistic persons with cognitive impairments in future research echoes a concern expressed by Dr. Laurent Mottron in his 2004 paper noted above Matching Strategies in Cognitive Research with Individuals with High-Functioning Autism: Current Practices, Instrument Biases, and Recommendations, Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004 :

The charting of cognitive deficits and strengths among persons with autism requires comparison of their performance with that of another group. In addition to differences in clinical status, the target and comparison groups can differ on many factors, such as age and level of functioning, which may influence the cognitive performances under study. Therefore, some kind of control should be used to limit the confounding effects that may result from this heterogeneity in these groups.

As autism is a condition that begins early in life, is observed across the range of functioning levels from severe mental retardation to superior intelligence, and may or may not be accompanied by identified neurological syndromes, a random group of individuals who satisfy the criteria for the diagnosis is likely to be heterogeneous at multiple and possibly interacting levels. This heterogeneity complicates the matching procedure and, accordingly, leads to the study of specific subgroups.

...

Some recommendations follow from these two studies. The first recommendation would be to focus on people with autism with mental retardation as well as on higher functioning persons. According to the current trend revealed by Study 1, matching issues, availability of high-functioning individuals and other practical concerns, results in an emphasis on cross sectional studies involving adult, intelligent individuals with PDDs. Besides the positive aspect of increasing our understanding of high-functioning individuals, one may question whether this research strategy will also be associated with conceptual and empirical insights about persons with autism who function in the range of mental retardation.

The trend toward under representation of autistic persons with cognitive impairments is very significant given the large proportion of autistic persons who also have cognitive impairments. The Bebko article referred to studiesn indicating that 40-70% range of persons with PDD's also have cognitive impairments. The Canadian Psychological Association in its Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006
stated that:

• Cognitive impairment is present in about 80% of persons diagnosed with Autism and
general intellectual functioning is most often below average. Persons diagnosed with
Asperger’s Disorder have average to above average intellectual functioning.

Autism's Outcasts and Some Harsher Autism Realities

Unlike the HFA persons and persons with Aspergers featured on the CBC the parents of Low Functioning Autistic persons, including me, know the fear that happens when their child goes missing as so often occurs with autistic children. We also have to deal with the realities that our children will be unable to attend Simon's Rock College for gifted youth (Amanda Baggs), excel as an employee in the complex work environment of Canada Post or intervene in the Supreme Court of Canada to argue against government funding of evidence based inteventions for autistic children (Michelle Dawson).

My son with Autistic Disorder, who can not speak for himself beyond a very basic level, is Low Functioning. Describing him as such is both honest and accurate. Attempts to obscure his reality by simply describing him as "Autistic" and lumping him together with the articulate Baggs, Dawson and Ne'eman is a violation of his most basic rights to be known by the world as who he is. He will require care by others for his entire life long after I am dead.

The hundreds of thousands of parents who are fighting for treatment, and seeking cures, for our autistic children do so because we know that our children deserve the best lives we can give them. Estee Klar-Wolfond, featured on CBC, is not representative of most "autism parents" who have fought hard for preschool funded autism interventions, appropriate educational assistance, tertiary care for those autistic children who engage in serious self injury and for decent adult accommodations.

Heather R's son is one of many of autism's outcasts, low functioning autistic persons whose stories are unsolicited for flashy articles in New Yorker Magazine or appearances on CNN and CBC. They are autism's outcasts. And it is we, their parents, and other caregivers, who will continue to fight on their behalf.





Conor Fun At The Circle Place And On The Trail













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Saturday, November 01, 2008

November Starts Nice In Nashwaaksis














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Conor's Autism Exercise Program ... For Dad







Yesterday was a beautiful day in Fredericton so Dad and Conor hit the trail in the afternoon for a good hour and a half of walking fun ... and exercise. Conor's brother and Mom got organized for Halloween trick or treat visitors to our door. I thought a short walk and some fresh air would be nice right after supper and Conor was happy to provide some company.

What started as a short walk turned into a brisk two hour walk from bridge to bridge, from the North side of Fredericton (Nashwaaksis) where we live, to the south side, back across the Saint John River and home. While on the South side Dad, getting a bit weary, thought a taxi the rest of the way home was in order. Conor had other ideas. When I asked if he wanted to taxi or walk the rest of the way home Conor said "walk" and kept a good pace.

In the pictures above early evening turns to night on the second part of our walking day. I usually sleep 5-6 hours a night. 3 1/2 hours of Conor's autism exercise program for Dad resulted in an unimaginable 9 hours of sleep.

Thanks Buddy.





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National Autism Conference Featuring Advances in Autism Research, Treatment and Therapy



NIXA, Mo., Oct 31, 2008 /PRNewswire-USNewswire via COMTEX/ -- The latest advances in autism research, treatment and therapy will be presented during The National Autism Conference in Fort Lauderdale. The comprehensive four-day conference, hosted by the National Autism Association and sponsored by CARE Clinics, is scheduled for November 13 through 16 at the Hyatt Regency Bonaventure Conference Center & Spa in Weston, Florida.

The conference will feature keynote speaker U.S. Congressman Dave Weldon. Other speakers include renowned experts on autism who will share their knowledge and expertise with both parents and practitioners. Topics to be covered are cutting-edge environmental research, dietary and behavioral interventions, legal and legislative strategies, estate planning, autism safety, marital support, and more.

Conference speakers include Dr. Andrew Wakefield, Dr. Jeff Bradstreet, David Kirby, author of the New York Times bestseller "Evidence of Harm," Dr. Doreen Granpeesheh and Neurofeedback expert Dr. Michael Linden who was recently featured on "The Doctors" television show.

"We're thrilled to be able to bring our national conference to Florida this year," said Rita Shreffler, parent and Executive Director of NAA. "This is an exceptional opportunity for parents to learn from today's most knowledgeable experts in the field of autism. Parents will leave this conference armed with both knowledge and hope for the future of their loved ones."
A first-of-its-kind workshop will be held on Thursday evening entitled "Just For Dads." The workshop will be conducted by Dr. Jonathan Tarbox of the Center for Autism and Related Disorders and will cover issues unique to fathers of children on the autism spectrum.

On Friday evening, conference sponsor CARE Clinics will host a treatment workshop for parents and will be providing a free buffet dinner for all attendees.

Saturday evening will feature a Beach-Party themed dinner event including a silent auction of unique items donated by Doug Flutie, Dan Marino, The Black Crowes and country music star Alan Jackson.

In addition to CARE Clinics, the National Autism Conference is sponsored by Autism Speaks, Hansen's Natural Beverages, LoJack and Project Lifesaver. For more information on the National Autism Conference, or to register online, visit www.nationalautismconference.org.

CONTACT:

Wendy Fournier, NAA (Portsmouth, RI) 401.835.5828
Rita Shreffler, NAA (Nixa, MO) 401.632.6452

SOURCE National Autism Association


http://www.nationalautism.org





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