Canadian Autism Dad Says Thank You Florida Rep. Bill Posey

In Canada we could use more federal politicians speaking honestly and accurately,

 as  Florida Rep Bill Posey has done in the US,  about Canada's autism crisis  including 

the realities  facing those with severe autism disorders and their families. 

Here in Canada we have seen very little national leadership in addressing Canada's autism crisis.  Particularly during the Stephen Harper - Mike Lake era the federal government has expressly refused to engage  in any meaningful way in addressing Canada's autism issues.  In Canada we have relied heavily on American leadership with respect to autism research.  Against that background this father of an 18 year old son with severe autism disorder, intellectual disability who like so many with those frequently co-occurring conditions also suffers from serious epileptic seizures,  says thank you to  Rep. Bill Posey (R-Fla.) for his demonstrated knowledge of autism disorder challenges.  I am not trying to offer my opinion of the US Combating Autism Act or any other American political issue.  As a Canadian it is not my place to do that.  I do appreciate though his informed, honest description of autism realities and his willingness to openly speak for those with severe autism who can not speak for themselves. 

Unlike so many politicians in Canada, and the US, by my reading, Rep. Posey  is well aware of the realities facing many persons with autism disorders and their families.  As the father of a son who suffers from the severe end of the autism disorder I particularly appreciate his willingness to speak openly about those on the severe end of the autism spectrum and the challenges they face, challenges not even mentioned by most Canadian federal politicians. 

Some excerpts from Rep. Posey's statement found at THE HILL'S CONGRESS BLOG:

Fix the Combating Autism Act

Autism Spectrum Disorder has increased dramatically in the last 25 years.  It is a crisis.  

..
.

At a recently called House Oversight Subcommittee meeting, Dr. Insel admitted that after eight years and spending $1.7 billion, the programs developed in the CAA have failed to determine the causes of the enormous increase of the prevalence of autism, failed to prevent a single case of autism, failed to produce any new biomedical treatment for autism, failed to materially reduce the age of diagnosis of autism, failed to ensure appropriate medical care for the co-occurring health problems faced by many with autism, failed to ensure even basic safety protocols for people with autism who "wander", unfortunately some to their deaths, and overall, failed the families facing autism—most especially the approximately one-third of families with children most severely affected by autism, who literally cannot speak for themselves, and whose severe disabilities portend one of the largest unfunded federal fiscal liabilities of the 21st century.

...

Instead, the IACC plan sits on a shelf while the NIH actually funds autism research through an entirely different set of processes and priorities, completely divorced from the strategic plan.  This disjointed process results in producing at best few effective results.   Furthermore, the agency has failed to evaluate and validate any of the commonly used treatments currently being used so that parents may eventually obtain insurance reimbursement. 

Not only does autism research funding fail to match the IACC recommendations, but the Government Accountability Office (GAO) recently found that up to 84% of such research had the potential to be duplicative.  For example genetics research funding far exceeded the IACC recommendations while environmental exposure research fell far short of those recommended.  Government witnesses affirmed during the hearing that recent research demonstrated that upwards of 55 percent of autism is linked to environmental factors, but the government research funding balance does not reflect this reality. 

...

We owe it to those most severely affected by autism, and all those who love them, to give this our best shot.  I fear that in the rush to pass “a bill” we are missing an opportunity to pass “the right bill” that produces results.  I hope my colleagues on both sides of the aisle will work with me to make the time to do so. 

USA's 1 in 68 Autism Rates and Canada's Fake National Autism Strategy

"At present there is no government monitoring system in place to provide us with accurate statistics on the prevalence of ASDs in Canada" 

Autism Society Canada 

The recent USA CDC reports that US autism rates are now estimated at 1 in 68 highlights, yet again, the lack of a Real National Autism Strategy in Canada. One of the few specific commitments made by the federal government over the years was a commitment to conducting a national surveillance program of Canadians with autism disorders.  As the above quote from the Autism Society Canada web site makes clear that has not happened.  Canadians must simply assume that US autism rates, now 1 in 68, also apply here in Canada. 

Canadian parents fought initially , and ultimately unsuccessfully, through the courts in BC (Auton) and Ontario (Wynberg/Deskin) for autism treatment coverage under medicare and autism services before commencing their more overtly political efforts, including the Medicare for Autism NOW! campaign.  Here in the Maritime provinces we took a political approach to developing a national autism strategy with the NB efforts in  which I was personally involved beginning  in 2001, primarily by many discussions with our Fredericton MP, the late Andy Scott.  In 2003  Andy Scott, made a public commitment in 2003 to work toward a National Autism Strategy at a tribute to his 10 years of service as an MP at the Boyce Famers' Market, an event I attended and reported on to the members of the Family Autism Centre for Education (FACE):

"October 19 2003

Hello everyone:

Some good news for those interested in autism issues emerged last night  at the Boyce Farmers' Market in Fredericton New Brunswick as Frederictonian's gathered to pay tribute to MP Andy Scott's  10 years of service as an MP on behalf of Frederictonians and as an advocate for human rights, services for the disabled, and cultural harmony. Andy announced that he would be meeting with Paul Martin in the hopes of pursuing a national Autism strategy. Although health care is primarily within provincial juridiction some health issues, such as breast cancer, HIV, etc. have been approached on a national level because of the magnitude of the issues involved.  While we have all heard political promises in the past,  Andy Scott has a proven track record of commitment to, and follow through on, disabilities and human rights issues.  Great news.

Harold Doherty

Family Autism Centre for Education (FACE)"

Andy's comments at the Boyce Farmers' Market were also featured in a 2003 Telegraph Journal article by Tali Folkins:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." 

Andy did answer the call on behalf of autistic Canadians and  actively pushed for a National Autism Strategy which he ultimately realized with the passage of Motion M-172.  However, the motion was essentially a commitment in principle with few obligations being undertaken by our federal government but it did help put autism on our national agenda and it was Andy Scott being Andy ... getting done what could get done ... with a view to moving forward further in future.  One of the specific items that the federal government did commit to in the motion was a national surveillance program, a program that would tell us how many Canadians now suffer from autism disorders.  It is a commitment that has still not been honored 8 years later. 

Andy Scott himself did continue the fight   as demonstrated in his June 5, 2007 statement in the House of Commons:

"Autism 

[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians."

Andy Scott's reference to his colleagues from Charlottetown and Sackville-Eastern Shore were  references to PEI's Shawn Murphy and Nova Scotia's Peter Stoffer both of whom, along with Andy Scott and Senator Jim Munson, also worked tirelessly toward achieving a National Autism Strategy.  The rally of which he spoke was a Halifax rally organized by Jean Lewis and FEAT-BC who had been raising autism awareness, lobbying politically and fighting for national autism coverage in the Courts for several years and continued to do so with its "Medicare for Autism NOW!" efforts.  I attended the FEAT autism really in Halifax and had the privilege of meeting Jean Lewis, several of the BC advocates and tireless Nova Scotia autism advocate Jim Young.  Under the BC leadership there have been subsequent national meetings in Oakville and Toronto.

NB MP Andy Scott, FEAT-BC, Medicare for Autism NOW!'s Jean Lewis

National Autism Rally, Halifax, May 26 2007

NS MP Shawn Murphy, Senator Jim Munson, NB MP Andy Scott 

National Autism Rally, Halifax, May 26 2007

Nova Scotia MP Peter Stoffer,  National Autism Rally, 

Halifax, May 26 2007

In 2006 Shawn Murphy went on to introduce his own private member's bill, Bill C-304,  in the House of Commons which, if passed, would have put Canada well on the way to establishing a REAL National Autism Strategy:

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

_____________________________________________

FIRST READING, MAY 17, 2006

_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a
national strategy for the treatment of
autism and to amend the Canada Health
Act

Her Majesty, by and with the advice and
consent of the Senate and House of Commons
of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.


NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

Bill C-304 was defeated soundly by a coalition of Harper Conservatives and separatist Blog Quebecois votes in the House of Commons. During debates in the House of Commons Harper conservative MP Mike Lake from Alberta, the autism face of the Harper government, a father of an autistic son, fought against the Murphy bill and helped vote it down to defeat.  

The hard truth is that there will never be a real National Autism Strategy as long as the Harper government rules in Ottawa.  Nor will a REAL NAS emerge from national autism charities that were never part of the struggle for a national autism strategy to begin with and who do not acknowledge the efforts made by parents across Canada who fought hard and long for a National Autism Strategy. National charities dare not speak contrary to federal government policy for fear of risking their charitable status. 

A real National Autism Strategy, even a real, current estimate of the number of Canadians who suffer from autism disorders will not come into existence until the Harper government is retired from office and will only come into existence with parent driven initiatives for whom helping their autistic sons and daughters is their most important objective.   Until then we will have to accept US figures for autism prevalence.  Accordingly, let it be known:

1 in 68 Canadians has an autism spectrum disorder. 

Autism Reality Check: Where Are The IACC Results?

I have previously written about the importance of the IACC and in a 2009 blog comment expressly thanked the IACC for its role in advancing autism research.  With the passage of 3 years though I have  become a less enthusiastic IACC booster.  Both the Canary Party and the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) have called for an accounting from the IACC and its leadership. I support their calls for accountability.  

Autism advocate representatives on the committee have been anti-cure ideologues while autistic persons seeking cure like Jonathan Mitchell are ignored in every sense of the word.  The IACC, despite paying lip service to gene environment interaction has for the most part continued to subscribe to the "it's gotta be genetic" belief system for explaining what causes autism. 

During the IACC existence, and during the 14 years since my son's autistic disorder diagnosis,  autism diagnosis rates have literally exploded. Yet the IACC makes no serious effort to address this burgeoning rate and allows the public to believe the tired, repetitive, and unsubstantiated excuses that every single reported increase in autism is due entirely to mid 90's diagnostic definition changes, enhanced awareness and diagnostic substitution motivated by parental desire to obtain all those wonderful autism services that apparently exist in every school district in the US.

I am not anti-IACC but I do believe there should be some accounting provided.  As the Autism Gadfly Jonathan Mitchell has said non-Americans, including Canadians like me, have no right to DEMAND anything from an American taxpayer funded institution but the IACC has an important role to play in autism research and, like many US institutions, has a world wide impact.  As a Canadian autism dad I ask the IACC to provide a real world accounting of its efforts.  Are we any closer to understanding autism causes? Will the IACC continue to politely ignore the environment side of the gene environment base of autism disorders?  Will we actively direct our research towards cures and treatments?

If I have been too one sided I invite anyone reading this blog, including the academics and researchers who occasionally humor this autism dad with a visit to my blog, to please provide examples of real world results achieved by the IACC or indicate where the IACC is going and whether it still hopes to find causes, cures and treatments for the increasingly diagnosed autism disorders.

Happy Canada Day! Now Let's Start Addressing Canada's Autism Crisis

Happy Canada Day EVERYONE! 

Including Canadians With Autism Disorders!

I can not imagine living in any other country in the world.  As much as I love our great neighbors to the South, I would not want to live in any country except Canada. I do not pretend, however, that Canada is perfect, not at all. It is impossible for me as the father of a severely autistic son, now 16 years of age, to ignore the exclusion of autistic children and adults in Canada from coverage for treatment of their serious neurological disorders, their autism disorders, under our so called "universal" health care system.   

As much as I love my country I admire our American neighbors for the leadership they have shown in dealing realistically with autism disorders.  ABA was applied and developed in the US as an autism intervention by Dr. Lovaas and remains the only solidly evidence based effective intervention for autism disorders. ABA has been endorsed in a recent US federal court decision requiring Medicaid coverage of ABA for autism in Florida.  US federal government employees now have medical insurance coverage of ABA for autism. 

Meanwhile in Canada,  autistic persons remain excluded from Medicare coverage for ABA.  We held one sham, orchestrated, (ABA 4 autism advocates, including me, were excluded)  National Autism Symposium that produced no tangible results and no road map for future efforts to help Canada's autistic children, youth and adults. Canadian autistic children who are fortunate enough to receive ABA do so under a national patchwork of largely ineffective service delivery systems.  New Brunswick, once hailed as a leader in autism service delivery by US autism expert Dr. David Celiberti, is now regressing into "in house training" for early intervention and education assistants.  Living conditions for adults with autism are simple: those who are high functioning will be housed in a variety of locations including group homes with untrained staff, hospital wards and  rented hotel rooms.  Those who are severely autistic with intellectual disabilities will often live out their lives in psychiatric hospitals. 

In the US, where they are not asleep at the wheel, the CDC estimates that 1 in 88 have an autism spectrum disorder. It is now time for Canadians to wake up and start addressing our national autism crisis in an organized, concerted effort.  Let's start including Canada's autistic children and adults in our national agenda before the next Canada Day celebrations. 

I love you Canada. I hope you feel the same way about Canada's autistic children and adults ... and start showing it.

TIME and the Autism Crisis

I have often written of the major mainstream media institutions  glossing over the harsher realities of autism disorders as experienced by those with severe Autistic Disorder.

One of my friends, a determined autism dad/advocate  from British Columbia, re-posted on Facebook an exception to this tendency and I thought it appropriate to mention again this realistic coverage of the challenges faced by a severely autistic adult. 

In  Growing Old With Autism TIME  published an article by Karl Taro Greenfeld about his brother  Noah Greenfeld, 42 when the article was originally published, in May 2009:

"Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con's trick of lashing out before anyone could take a shot at him.

Noah's autism has been marked by "three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others," according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)

Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.

We are largely unprepared to deal with this crisis.  ..."

There are some who can flippantly ask ... autism crisis ... what crisis? Karl Taro Greenfeld is not one of them.  Nor am I as the father of a 14 year old  boy severely affected by his Autistic Disorder. In our house the Autism Crisis is very real and never out of mind.

Autism Rising. Time to Face the Truth

The prevalence of ASD is rising in this country without a definitive understanding of why this is occurring. According to a December 2009 report of the Centers for Disease Control and Prevention (CDC), 1 in 110 children are diagnosed with Autism Spectrum Disorder (ASD), including 1 in 70 boys. That rate represents a 57 percent increase from the CDC’s report in 2007, which last reported that 1 in 150 children with a diagnosis of ASD.4 The CDC has not been able to attribute this increase to better, earlier and broader diagnosis of the disorder, concluding that it cannot “rule out” a true increase in the prevalence of ASD.

The economic implications of ASD on society are significant. According to a 2006 study by the Harvard School of Public Health, the direct and indirect costs of taking care of an individual with autism over a lifetime can be $3.2 million. Lost productivity and adult care contribute heavily to this estimate. The cost to society to care for all individuals with autism is estimated to be $35 billion each year.5

Division of Health Care Finance and Policy (DHCFP)Review and Evaluation of Proposed Legislation Entitled: An Act Relative to Insurance Coverage for Autism House Bill 3809 Provided for The Joint Committee on Financial Services March 2010       

I will leave it to those who glorify autism disorders to KWibble with the information provided by  both the DHCFP of the Commonwealth of Massachusetts and the CDC.  The conclusions reached concerning rising autism rates have been voiced many times by concerned parents and autism professionals but have been dismissed   Autism is a disorder, it is a serious disorder that impacts everyone in our society. It is time to ignore the autism is beautiful nonsense once and for all and push hard for real autism research, treatment, cure and services. Let's not let another decade go by without a serious effort to address the very real autism crisis that has been staring us in the face for so long.


It ain't just genetic. Time to face the truth, autism is rising and the crisis is real.

Woe Canada: Can Do American Politicians Address Autism Crisis While Harper & Ignatieff Do & Say Nothing

In the 11 years since my son, Conor, was diagnosed with autism the rates of autism diagnoses have skyrocketed in numbers that can not be explained entirely by the definition changes for pervasive developmental disorders (autism spectrum disorders) in the DSM. In the United States several American political leaders are taking steps to address the autism crisis while in Canada, the Harper government passes a budget which spends big bucks everywhere but offers nothing, zilch, for autism. And his de facto governing partner Michael Ignatieff also remains silent on autism issues; demanding nothing for autism as part of his party's continued propping up of the Harper party.

President Obama's commitment to addressing autism issues is well known:

Autism

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:

• First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
• Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
• Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
• Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.

Recently governors Doyle of Wisconsin and Corzine of New Jersey have spoken forcefully in support of initiatives to help autistic people and their families:

Governor Doyle in the Wisconsin State of the State Address:

First, we can make sure kids with autism get the treatment they need. Private insurers should cover autism; the treatment has been proven effective, and families deserve the right to see their children improve.

Governor Cozine's efforts on behalf of autistic people in New Jersey were described in a February 3, 2009 editorial on NorthJersey.com:

SINCE New Jersey has the highest incidence of autism in the nation, it's only fitting that our state should be a leader in supporting families facing this devastating diagnosis. The earlier the disorder can be identified and the more services that are available, the more positive the outcome. That is why Governor Corzine has made autism a high priority and has started a series of initiatives that are at various stages of progress. His efforts will inevitably be affected by the economic crisis and the state's financial woes. But as The Record's Elise Young reported this week, some success is already evident. An expanded and invigorated Governor's Council for the Medical Research and Treatment of Autism has been set up, along with an Adults with Autism Task Force and a training program for police, firefighters and emergency medical technicians on how to respond to those with autism. Perhaps the most promising and potentially effective initiative is the "early intervention" plan, which will result in evaluation guidelines for doctors and other health professionals who treat infants and toddlers. Guidelines have already been drafted and may be ready by spring.

Meanwhile back in Canada there is no mention in budget documents or discussions by Prime Minister Harper or Opposition Leader Ignatieff of autism or any commitment of funds to address Canada's autism crisis.

Too bad about that autism stuff eh?

autism

The Adult Autism Crisis

In What Happens When They Grow Up, Newsweek, to its credit, focuses on the very real adult autism residential care crisis which exists in the United States (and in Canada). Newsweek is unable to provide any real solutions but hopefully the article will help focus the public discussion of autism on the very serious crisis confronting adults with autism disorders who can not care for themselves.

Not all "autistics" grow up to become researchers, Supreme Court of Canada litigants and college students, appear repeatedly on CNN with Dr. Gupta, or start "Autistic"rights movements. Some are more severely impaired, lacking basic communication skills and an understanding of the world and how to function in it.

Here in New Brunswick we have much to be proud of in terms of autism service delivery for autistic pre-schoolers and our schools are rapidly becoming a model second to none in North America for educating autistic students. But our autistic adult services are abysmal.

In New Brunswick our autistic adults in need of residential care are placed in privately operated group homes. The homes are not set up specifically for autistic adults and the staff are not trained to deal with autistic adults. The more severely autistic adults and older autistic youths in New Brunswick have been kept on the grounds of a correctional facility, on the ward of a general hospital, left with overwhelmed parents or exported to facilities elsewhere in Canada and the United States.

The adult autism crisis is not unique to New Brunswick but, unlike our services for preschool and school age autistic children, the adult care autism crisis here in New Brunswick is amongst the serious in North America. By literally exporting our autistic adults we are admitting that we have failed some of our most vulnerable New Brunswickers.

autism

Autism Hero Stefan Marinoiu's Hunger Strike For Autism Now

There are many ways parents and other concerned citizens can advocate for health, treatment, education and residential services for autistic children and adults. Some join organizations, hold awareness meetings with government, business and the public, write letters to the editor and so on. Stefan Marinoiu of Toronto, who I met a couple of weeks ago during the recent Medicare for Autism Campaign NOW! visit to Toronto and Oakville, goes much further. Stefan has put it all on the line advocating for autism. And he is doing it again, right now. Stefan began a hunger strike for autism on May 5 outside Queen's Park in Toronto.

This winter Stefan walked for 11 days, over more than 200 miles, from Toronto to Ottawa, in the middle of a tough Canadian winter, blizzards and all, in an effort to meet Alleged Health Minister Tony Clement to ask the Canadian government to do something to help autistic people in Canada. He was traveling on foot with no warm trailer to retire to at the end of the day or if things got rough. With his winter autism trek Stefan literally put his life on the line advocating for autism change. Stefan got a 15 minute meeting with Minister Clement who said very little of substance. While the alleged federal Health Minister was not moved by Stefan's efforts parents of autistic loved ones across Canada were very moved. It was a privilege for me to meet Stefan in Toronto and Oakville. He is a genuine and compassionate person and has a great family.

Stefan's daughter Lia has started a Facebook group HUNGERSTRIKE for AUTISM NOW on which you will find updates and information about Stefan's Hunger Strike for Autism Now. As Lia points out her father is a type-2 diabetic. His hunger strike again poses serious risks to Stefan's health. Stefan's willingness to put it on the line for autism is a reflection of his tremendous personal courage and his strong convictions. It also reflects his frustration with the lack of help for autistic people like his son, 15 year old Simon, as shown in this Toronto Sun video:

I hope that Stefan takes care of himself as he tries again to impress upon government and public decision makers the impact that autism is having on autistic persons and their families and the need to take serious action to address Canada's autism crisis.

autism

Autism Crisis In Scotland - Invisible Autistic Adults

In Scotland Lacks Autism Services I commented on an article on healthcarerepublic on July 6, 2007 and the lack of services for people with autism in Scotland. That article, Call to find autism early in Scotland, focused on guidelines published by the Scottish Intercollegiate Guidelines Network (SIGN) calling on doctors to look for signs of autism in children and adolescents, including problems with social interaction and play, speech and behaviours. The article also expressed the doubt of many professionals in Scotland that early diagnosis would make much difference because of the lack of autism services available in Scotland.

In Revealed: ‘invisible’ adults living with autism, the Sunday Herald today reports, on an impending report by the National Autistic Society, the lack of services for autistic adults in Scotland, their dependency on family members for support and the isolation in which many spend their lives:

"Issues in the report include limited access to diagnosis, with 56% of those surveyed saying they found it hard to get their condition recognised. One adult said: "The GP did nothing. She didn't see any point in diagnosis for an adult."

But even after diagnosis many say they do not get the support they need. One participant in the survey commented: "I have had little or no support ever - my mother has done everything."

...

Bill Welsh, president of the Edinburgh-based Autism Treatment Trust, said the plight of many adults with autism had been "swept under the carpet", yet one child in 100 in the UK was diagnosed with the condition and the cost to society for each autistic child was estimated at £4 million. He added: "A major social, health and financial problem is upon us and urgent action is required."

autism

Autism Rising in Alabama

WHNT.com, from Huntsville, Alabama, reports statistics from an Alabama state task force report which says that the number of children in Alabama's public schools diagnosed with autism has grown from 68 in 1990 to 849 in 2000 and to 2,297 in 2006. Those who accept, as an article of faith, that there are no environmental factors in the worldwide increases in autism will immediately point to the changes in the DSM diagnostic criteria and definition of autism, increased awareness, and families seeking access to services by seeking an autism diagnosis for their children, as the sole explanation for such an increase. Some of these arguments are undoubtedly valid explanations for explaining part of such increases.

The changes in definition of autism began primarily in 1994 with the DSM-IV the last major revision of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association. Some will argue that those changes did not have any impact for a couple of years afterward and that makes sense. But that argument does not explain the dramatic increase, the tripling of reported autism diagnoses in the Alabama report between 2000 and 2006. Here in New Brunswick Canada my son was first diagnosed with an autism disorder in 1998. The DSM changes were reflected in practice in this area at that time. By early 2000 there had been major reviews of Autism Disorders conducted in California, New York and Maine and by the office of the US Surgeon General. The definition changes and awareness arguments do not seem to offer much explanation for the nearly tripling of autism diagnoses amongst Alabama school children between 2000 and 2006.

Nor does the "parents pushing for autism diagnoses to obtain services for their children" argument, provide any assistance in explaining the Alabama increases between 2000 and 2006. The recent Alabama autism task force report recently reported that Alabama lacks the autism services offered by nearby states and across the United States.

The dramatic increase, the near tripling, of autism diagnoses amongst Autistic school children between 2000 and 2006 should raise serious questions about a possible environmental factors in contributing to such increases. Smug assumptions to the contrary are simply not based on evidence or sound reasoning.

autism

Autism Waiting Lists In Alberta

The disparity in funding for autism treatment in Canada has, in the past, led some families with autistic children to move to oil rich Alberta, which has substantial government funding available for autistic children. But the availability of better funding has not translated into better services in all cases as children are stuck on lengthy waiting lists awaiting assessment. In Situation critical for autistic children Nicki Thomas of Sun Media reports on the critical shortage of staff and funding threatening the futures of autistic children in Edmonton. Terri Duncan of Children's Autism Services of Edmonton indicates that there are staffing shortages everywhere in Alberta and children are waiting up to a year for assessment. That year is a critically important year lost for autistic children in need of treatment:

Duncan said if autism isn't detected and treated early on, disruptive behaviour - like hitting, kicking and biting - develop from an inability to communicate effectively.

"Those behaviours can make lives really difficult and hard to deal with," she said.

"We would be able to take a lot more children off the waiting list if we had more qualified, trained staff," Duncan said.

Many credible studies and reviews of professional literature have confirmed that early ABA intervention is critically important for achieving the best possible outcome for autistic children. Lengthy waiting lists for assessment deprive autistic children of a better future.

In New Brunswick many, including me, have thought that a medical doctor is the only professional who can diagnose autism disorders. I was informed though that Psychologists can also make the initial autism diagnosis.

New Brunswick, Alberta, or anywhere else in Canada, it would seem that an important step in addressing the autism crisis, a crisis which is very real for families of children with autism, is to take steps to educate GP's in diagnosing autism. The tools being made available now by the American Academy of Pediatrics and similar organizations should be used by all doctors and psychologists to ensure autistic children receive early ABA treatment during the important early years without time being squandered.

autism

Autism Speaks Tackles Autism Crisis in South Florida Mar 24 - 28

Donald Trump, Bob Wright, Suzanne Wright, Melania Trump
Photo: TOWN-CRIER Online

Autism Speaks is continuing to show outstanding leadership in tackling the Autism Crisis in the US and around the world. Co-founders Bob and Suzanne Wright have joined with Donald and Melania Trump, local parents and autism advocates in organizing a South Florida autism awareness and fundraising initiative to take place during the last week in March. Autism Speaks Week, March 24-30, will include a number of activities including a Television News Series on the autism crisis of escalating rates of autism diagnoses, March 24 to 28 on NBC stations in the area, an on-line auction, ING Direct Ride Now South Florida motorcycle ride, Saturday, March 29, a telethon and broadcast of 'Autism Every Day', and a concert for Autism Speaks, headlined by Lionel Ritchie, Sunday March 20.

As stated by Bob and Suzanne Wright in TOWN-CRIER Online:

“Autism is a national health crisis that is affecting families in every corner of this country, from Florida to Alaska,” Bob Wright said. “Autism Speaks Week will shine a spotlight on the struggles of South Florida families and inform people about what they can do to improve the lives of individuals with autism in their community.” “Our hope is that this series of events will increase the level of understanding and acceptance,” Suzanne Wright added. “The money we raise will help Autism Speaks fund autism research and support community organizations here in South Florida and across the United States that provide critical services to children and adults with autism.”

The ability of Autism Speaks to generate public awareness of autism, raise funds for autism research is amazing. And now Autism Speaks is turning its considerable abilities to assisting local autism support organizations. Not content to engage in endless peurile debates over the appropriate metaphors to use in describing autism or whether to say "autistic person" or "person with autism" Autism Speaks is actually doing something constructive, in a big way, in addressing the Autism Crisis.

autism

Canadian Autism Prevalence Rates Different Than US Rates?

In early February 2007 the Center for Disease Control, the CDC, publicly revised its autism estimated prevalence rate from 1 in 166 Americans to 1 in 150. In Canada the Canadian Institutes of Health Research, the CIHR, web site indicates on its autism page, Health Research: Key to improving outcomes for children with autism, that "Autism, or more appropriately autism spectrum disorders (ASDs), affects an estimated 6 of every 1000 Canadian children." The calculator program on your computer will tell you that 6 in 1000 is roughly 1 in 166, the old CDC figure.

Why the discrepancy between the CDC's estimated prevalence rate and the CIHR's estimated Canadian rate? There are a number of possible explanations:

1) Canada, for reasons that could be environmentally or genetically based, could actually have fewer persons with autism spectrum disorders than the United States.

2) The CIHR may simply be using the old CDC estimate, unaware that the CDC revised its estimates of autism prevalence almost one year ago.

3) The CIHR may be aware that the CDC has changed its estimate but disagrees with the new estimate.

4) The CIHR may be aware of the newer CDC estimate and may agree with it; but can't be bothered to update its autism website information.

I am going to go out on a limb and guess that the correct answer is .... 4) The CIHR can't be bothered to update its autism website information. That explanation would be consistent with the attitude of the CIHR's political masters, the Harper government, which can't be bothered making a serious effort to address Canada's autism crisis.

And this is the same CIHR which said that it wants to build ties in Canada's autism community and help disseminate autism information to those communities? Maybe those of us who are merely ignorant parents, whose shoes will never be asked to tread the carpets of the CIHR national autism symposiums, should weigh carefully the information that ultimately emerges from those secretive conventions.

autism

Autism Numbers

In Autism by the numbers Newsday offers a reality based perspective on the autism crisis facing families and governments in the United States today and the need to establish regional autism prevalence in order to allocate resources appropriately. The opinion article points to the lack of funding and implementation of the US Combating Autism Act , the lack of standard reporting requirements for schools and pediatricians, the slow pace of movement by the CDC and lack of coordination by various levels of government for the failure to establish regional autism rates.

The call by Newsday for action, for detailed epidemiological studies, to establish regional rates is based on two premises: (1) Autism is a serious disorder with an enormous impact on families and (2) Autism diagnoses, for whatever reason, are increasing at an alarming rate.

Autism is a lifelong heartbreak for parents of children diagnosed with the puzzling disorder, whose incidence is growing at alarming rates.

Not only does it mean years of exhausting care to manage behavioral aberrations that make everyday functioning for their children difficult at best, dangerous at worst. But it also means constant worries by parents that, after they're gone, their adult children may fall through the cracks of a system badly equipped to serve their many needs.

And those needs are growing rapidly. Once reported as a rare disorder, autism now affects one in every 150 children in the United States, according to the latest available studies conducted by the federal Centers for Disease Control and Prevention.

...

Regardless of cause, evidence that a growing number of children are being diagnosed as autistic is everywhere. Agencies on Long Island that provide social, educational and training services for children and adults with autism can't keep up with the growing demand. Residential facilities in Nassau and Suffolk report waiting lists ranging from two to five years.

Autism Crisis - Australia

ABC is reporting on an Australian study which indicates that autism is costing Australia [ Population 20,823,333, May 14 07, Australian Bureau of Statistics] up to $7 billion a year; a reflection of a 10 fold increase in rates of Autism and Aspergers. Dr. James Morton of Autism Early Intervention Outcomes Unit says the problem has caught government unawares. Apparently the Australian government is as oblivious to the realities of autism as the Canadian government. Maybe Roy Grinker, Kristina Chew and others can offer some soothing anthropological perspective and some new literary metaphors to assist the Australian families who are struggling to help their autistic children acquire basic language and life skills.

http://tinyurl.com/38l6b

<span style="font-weight:bold;">Autism costing Aust up to $7b: report

A new report has found the treatment of autism and related conditions such as Asperger syndrome are costing the Australian economy up to $7 billion a year.

It was commissioned by Dr James Morton, one of the founders of the Autism Early Intervention Outcomes Unit.

Dr Morton says the report's release in Brisbane today has been timed to mark the start of Autism Awareness Week.

"It's really gone under the radar. It's exploded in the last 10 years. Some of the studies suggests that the incidence has increased 10-fold in the last decade," he said.

"I think that is why it's caught government unawares. It wasn't anywhere near the problem it is now 10 years ago."

Dr Morton says the official response to the rising incidence of autism has been too little, too late.

"I hope that this study brings [autism] to the community's attention and leads to funding for early detection and early intervention, which makes an enormous difference and is very under-funded in this country," he said.

http://www.abc.net.au/news/newsitems/200705/s1921975.htm

Autism Is A Global Health Crisis - Suzanne Wright

Founder of Autism Speaks, Suzanne Wright, along with Priscilla Natkins and Andy Shih
Gulf Times Newspaper

Suzanne Wright and Autism Speaks are raising autism awareness around the globe. The information presented in the following article is basic and to the point. Autism is not a literary metaphor or a different cultural viewpoint, it is a neurological disorder characterized by a range of very serious deficits. Children with autism can be aided immensely by behavioral interventions. But parents and professionals have to understand this point and act promptly and decisively. Autism awareness, not misleading rhetoric, is critical to helping autistic children whatever their country of residence.


Autism is a global health crisis: expert
Published: Wednesday, 25 April, 2007, 08:43 AM Doha Time

Staff Reporter
AUTISM strikes without any discrimination of ethnicity, class, geography, gender or race, said Autism Speaks’ founder, Suzanne Wright, yesterday during the Second Annual International Forum on Children with Special Needs in the Shafallah Center.
Also speaking on the occasion were Ad Council’s executive vice president and director of client services, Priscilla Natkins and Autism Speaks’s chief science officer, Andy Shih.
Referring to autism as ‘an urgent global health crisis,’ Wright said that this fast growing, serious developmental disorder, has become an epidemic which is found in one of every 166 children in the United States.
“Though the causes are unknown, it can spread worldwide without any discrimination,” she explained.
The session, on the urgency of bringing Autism epidemic awareness through public service advertising, began by screening a documentary entitiled, ‘Autism everyday’.
The daily lives of eight autistic children were screened, along with their parents’ apprehensions. The children, all above three to four years, required constant attention and were seen restless.
The main symptom was ‘stimming’, a repetitive body movement that self-stimulates one or more senses in a regulated manner, some of them, being grinding teeth, jumping on toes, head banging and scratching. The child makes absolutely no eye contact and many of them stopped speaking after a particular age. Simple tasks like dressing, brushing and eating by themselves took hours and a mother agreed to this, saying, “it took me two years to teach my son to put his shirt on”.
There have been instances when a child affected by autism had not slept for two to three weeks.
Researches say that 80% of the time, parents with an autistic child end in a divorce, as they are equally helpless and cannot cope with the emotional, and financial issues.
Some of the measures taken for the care of children diagnosed with autism, are behaviour therapy, music therapy, physiotherapy and speech therapy, most of which are done at home.
The parents were apprehensive, as these treatments were expensive - as high as $100 per hour.
Suzanne Wright, who herself has an autistic grandson, Criston, said that grandparents also play an extraordinary role in the care of autistic children. She exhorted that they should provide support to their children to raise the diagnosed child.
Wright said that autism can be diagnosed when children do not exactly meet their milestones, or meet them at an unusually early time, such as sitting up before six months and walking before 10 months.
Wright said that raising awareness was the corner stone of her mission.
Priscilla Natkins spoke about the role of media and and the effective public service campaigns that were raised. Some of the advertisements screened urged the audience to know more about autism, through their website.
The campaigns launched have successfully increased parental knowledge. It was said that the earlier the awareness, the earlier intervention will help. The advertisement council relied on pro bono services from advertising agencies and the media.
The target audience was parents of newborn, and the secondary target being doctors and health care professionals.
Andy Shih, spoke about the research they in this field. He also talked about the importance of scientists all over the world linking and working together to find a cure for this neurological disorder.

http://tinyurl.com/37853z

Autism Is NOW a Health Crisis; Soon a Disaster

The attached article by Anne McElroy Dachel should be mandatory reading for public officials charged with responsibility for public health issues in Canada, the United States and elsewhere in the world. Ms Dachel takes the CDC, in particular, to task for its failure to portray the seriousness of autism disorder for so many individual autistic persons and the impending costs to taxpayers in the US of paying for the care and supervision they will require in a few short years. While her support for the mercury-vaccine-autism theory will not be endorsed by all readers, including me, the magnitude of the existing health crisis is beyond serious dispute.

Canada is cursed by the same nonchalant ignorance on the part of our leaders. Prime Minister Stephen Harper, after ordering his troops to vote down a motion to amend the Canada Health Act to provide funding for autism treatment across Canada, then put a budget before Canadians which did not dedicate a single penny to provide funding for autism treatment. Prime Minister Harper was not just heartless toward autistic children and adults with the middle finger salute he gave them; he also demonstrated his own ignorance of a serious health crisis which will soon hit Canadians very very hard financially in providing supervision and care for autistic adults, now numbering 1 in 150.




Autism: "A Serious Public Health Problem"
Tuesday, 10 April 2007, 11:41 am
Opinion: Guest Opinion
Autism: “A Serious Public Health Problem”

By Anne McElroy Dachel

The article about autism, No Know Cause, No Cure by Jennifer Chancellor in the Tulsa World on April 1 got my attention. It wasn’t because we were again told that no one knows for sure why one in every 150 U.S. kids is now autistic, or that experts have no idea how to cure them. That’s pretty much the way autism is covered in the press. What stood out to me was the first part of the statement, “The CDC has called autism a national public health crisis.”

As someone who has read news reports on autism for several years, I’ve yet to see the Centers for Disease Control and Prevention use the term “crisis” when talking about autism.
Maybe I missed it somewhere, but after several days searching through CDC press releases on autism, it just wasn’t there.

The Oprah Show covered autism on April 5. Oprah started the program by saying that the CDC calls autism a “national health threat.” That was the first time I’d seen a term as strong as “health threat” used by the CDC in referring to autism. Oprah said that 67 children a day in the U.S. are diagnosed with autism, making it one every 20 minutes. That seems like a lot more than just a “health threat.”

The CDC is extremely careful when mentioning autism. For instance, in February when announcing the results of a 5 year old study revealing an autism prevalence rate of one in 150 among eight-year olds, the “C” word was never mentioned. "Autism is a serious public health problem which impacts too many children and their families," said CDC Director Julie Gerberding, MD, MPH. Is “Serious public health problem” as alarmed as the Director is about autism in 2007?

So why is it that autism doesn’t deserve a crisis rating by the CDC? Lots of other diseases and disorders do. They’ve come out in official statements calling HIV/AIDS a “crisis.” The explosion in the rate of diabetes in the U.S. is a “crisis” to the CDC too. The CDC has an official “Bird Flu Crisis Plan” ready for when the avian flu actually affects someone in the U.S. We officially have a “childhood obesity crisis” and an “asthma crisis” according to the CDC.

While I’m not arguing that diseases and disorders like AIDS and diabetes don’t deserve to be called crises, I’m just continually amazed that the CDC doesn’t consider autism in a league with other serious health concerns.

Another term the health care officials are careful not to use in the same breath as autism is the word “epidemic.” Autism may affect more children than pediatric AIDS, juvenile diabetes and childhood cancer COMBINED, but autism is never an epidemic to the CDC. Surprisingly, the CDC refers to each of these other diseases on their own as epidemics.

As the autism numbers exploded from one in 10,000 in the 1970s, to one in 2,500 in the 1980s, to the present one in every 150 children in the U.S., the CDC kept telling us that it just wasn’t happening. When asked why more and more autistic kids are filling our schools, the federal health experts told us that doctors were getting better at recognizing autism. This “better diagnosing” explanation has just been reinforced with the claim that the new rate of one in 150 is because the CDC is getting better at counting.

The official autism website of the CDC makes no reference to either “epidemic” or “crisis.” The tone of the information has all the urgency of the CDC fact sheet on treating head lice. There’s no indication that autism costs the U.S. $90 billion a year and that it's projected to increase to $200-400 billion annually in ten more years, according to the Autism Society of America. Nor is there anything about the recent conservative estimate that each autistic person in the U.S. will cost the American taxpayers $3.2 million

Under “What is Autism Spectrum Disorder?” on the CDC website, we are told that “people with ASD often have problems with language, communication and social skills. ASD may display a certain set of behaviors, such as resisting change, repeating phrases or actions, not interacting with others in traditional conversation or play, or showing distress for unapparent reasons.”

That weak description doesn’t tell us how seriously affected many children with autism are. It doesn’t include the children with violent behavior who are a danger to themselves and to others, or the child who can’t talk at all and has no fear of dangerous situations and is in need of constant supervision.

And the CDC website fails to note the other health problems like chronic diarrhea, seizures, allergies, and asthma which often accompany autism.

The CDC may have their own reasons for avoiding attention-getting terms like “crisis” and “epidemic.” This is also the agency that runs the vaccine program. As the charge continues to be made that vaccines are directly related to the explosion in the autism rate, the CDC continues to deny it.

On the CDC website, they say, “No one knows exactly what causes Autism Spectrum Disorders.” They cautiously say that “experts believe genetic and environmental factors probably interact in complex ways to contribute to the onset of the disorder,” but they’re quick to tell us, “…neither thimerosal-containing vaccines or MMR vaccine are associated with ASDs.” Such claims “lack supporting evidence and are only theoretical.”

With new rate, the autism advocacy group, SafeMinds published a press release in which SafeMinds president Lyn Redwood, RN stated, “We are truly in the midst of an epidemic.” One of the things she asked for was that the CDC “acknowledge the epidemic increase in autism rates.”

At the same time, National Autism Association President Wendy Fournier in the Providence Journal said, “Autism is a crisis. It’s an epidemic. We’re renewing our call to the CDC to declare that autism is a national emergency.”

That’s highly unlikely. If the CDC won’t call autism a “crisis” or “epidemic,” they sure aren’t going to use “emergency” anywhere near the word autism.

Others however, echo the call to recognize autism as a national health care emergency. F. Edward Yazbak, MD, FAAP wrote Autism 99: A National Emergency which summarized a report on autism in 1999 by the California legislature that showed “a massive and persistent rise in the incidence of this disease.” Dr. Yazbak also cited the exponential increase in autism in New Jersey, Pennsylvania, Colorado, Missouri, and Rhode Island. In other words, the explosion in autism wasn’t just an isolated fluke, it was everywhere.

In Autism 2000: A Tragedy, Dr. Yazbak focused on the 26% annual autism increase in U.S. schools. The next year he wrote, Autism 2001:The Silent Epidemic, in which he gave the stunning figures out of California of 7 or 8 new cases of autism a day in that state. Dr. Yazbak asked why the CDC continued to ignore autism, “One can only imagine the outcry if there was an outbreak of 4,000 cases of any other pediatric illness in the same three month period. The CDC specialists would be clamoring for a cure and seriously looking for the clues to the epidemic.”

In his best selling book, Evidence of Harm, author David Kirby wrote that through the efforts of autism advocate Rick Rollins of the Mind Institute, the California legislature produced the “first-ever comprehensive epidemiological report on the increase of autism cases in California.” Rick broke that down to “one new child every four hours” diagnosed with autism in the state. He added, “Each of those kids would end up costing taxpayers at least two million dollars.” Furthermore, “unlike children with cancer or AIDS, autistic kids don’t die from their disease. These facts don’t seem to get the attention of the CDC and autism is downplayed. Officially calling autism an “emergency,” “epidemic,” or “crisis,” would necessitate taking action.

The clock is ticking however. The generation of autistic children will soon become the generation of autistic adults dependent on the U.S. taxpayers for support and care. The first wave will be aging out in the next few years and the autism epidemic will be evident to everyone. When that happens, it will no longer be just a crisis. It will be a disaster.

Anne McElroy Dachel
amdachel @ msn.com
Member:
A-CHAMP
(Advocates for Children's Health Affected by Mercury Poisoning)
http://www.a-champ.org
National Autism Association (NAA)
http://www.nationalautismassociation.org