Conor and Dad Bridge Walk - Seeing the Sights

It was a beautiful morning and a great bridge walk. Conor checked out the sights along the way in our beautiful city of Fredericton.












autism

Newfoundland's Autism Wait Lists - Canada Needs a REAL National Autism Strategy

There is discouraging news out of Newfoundland where, despite a feel good commitment to improve autism services by all three parties in the Newfoundland legislature in May, wait lists are delaying diagnosis and treatment as reported at The Telegram:

"parents are still contacting the Opposition Office with stories of waitlists up to 10 months before their children can be seen by the appropriate medical professionals.

“We recently spoke to a parent of a four-year-old boy in the Codroy Valley who has been advised that there are 70 children on the waitlist ahead of his son,” Jones said. “Staff at the Janeway could not provide an appointment for this child to be assessed for autism and was instead told that he would have to wait at least 7-10 months for his first appointment.”

In New Brunswick and some other Canadian provinces psychologists can also diagnose autism. It isn't clear from the article whether only that is true in Newfoundland or whether only medical doctors can diagnose autism. If, a change to permit diagnosis of autism by psychologists would obviously reduce diagnostic delay.

Whatever the reason it is clear that Canada needs a REAL National Autism Strategy to ensure that Canadian children, whatever their province or territory of residence, receive access to early diagnosis and evidence based interventions. Funding is one issue, the frozen bureaucratic mind set is another that prevents some children from receiving early intervention in Canada.

If you want to do a small part to help Canada toward adoption of a REAL National Autism Strategy you could visit Top Priorities for Canada, register and endorse the Canada Needs a REAL National Autism Strategy option. (Preferably as your No. 1 Priority)

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Autism Research Leadership: Katie Wright Rips the Interagency Autism Coordinating Committee and Dr. Tom Insel

Katie Wright has written a hard hitting piece,"Can You Hear Me Now?", on the role of the IACC and Dr. Tom Insel in preventing funding of meaningful vaccine autism studies including the comparative study of vaccinated and unvaccinated populations. The article was written for SafeMinds and reprinted with permission at Age of Autism. Ms Wright calls for Secretary Sebelius "to investigate Dr. Insel’s actions and reinstatement of vaccine objectives that were removed under false premises in January from the IACC’s Strategic Plan. "

It will be interesting to see whether President Obama and Secretary Sebelius respond to the SafeMinds/Katie Wright request. Given Secretary Sebelius statements about the safety of the as yet untested Swine Flu vaccine and thimerosal it does not seem likely that the Obama administration will conduct a critical examination of the IACC and Dr. Insel's leadership on vaccine and autism issues.

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Autism and Applied Behavior Analysis Workshop in Arizona - Real Help for Autistic Children

With all the nonsense about autism in the mainstream media, Hollywood movies and Neurodiversity blog sites it is refreshing to see a simple notice like the one from Arizona about an organization actually trying to help autistic children. The notice, on yourwestvalley.com, refers to a workshop called Autism and Applied Behavior Analysis presented by the Arizona Autism United, Inc., a 501(c)3 nonprofit organization providing services to children with autism spectrum disorders in Arizona.

The notice states quite simply that Applied Behavior Analysis is a method used to intervene on problem behaviors and teach new skills. Contrary to all the tortured arguments put forth by anti-ABA activists like Michelle Dawson that simple statement reflects the focused approach of people, and ABA, that actually help autistic children.

The yourwestvalley.com article Workshop focus is 'Autism and Applied Behavior Analysis' has all the contact information for parents in the area who might be interested in registering for this free workshop scheduled for Aug. 22 .

This type of hard work and focus on actually helping autistic children is not likely to make the NYT, CNN or CBC but it is the type of effort that goes on every day by parents and organizations concerned about the realities facing autistic children in a challenging world. People who do what they can to help. Real autism advocates.

Nothing is done without them.

autism

More Autism on the Way? Swine Flu Vaccine Adjuvants, Thimerosal and Autism

Pregnant women will be at the front of the line for the Swine Flu vaccine in many countries. Mercury in thimerosal crosses the placental barrier. So thimerosal will not be used in the Swine Flu vaccine right? WRONG!. Thimerosal will be used and its negative effects, including possibly autism in some of the women's children, could be enhanced by the aluminum adjuvants used in the vaccines.

Australian scientist Vera Scheibner Ph.D., has described the effects of aluminum adjuvants including the enhancement of mercury toxicity and possible autism implications amongst a host of other health issues in The Terrifying World Of Vaccine Adjuvants:

Adjuvants are formulated compounds, which when combined with vaccine antigens intensify
the body’s immune response. They are used to elicit an early, high and long-lasting immune
response. “The chemical nature of adjuvants, their mode of action and their reactions (side
effect) are highly variable in terms of how they affect the immune system and how serious their adverse effects are due to the resultant hyperactivation of the immune system. While
adjuvants enable the use of less *antigen to achieve the desired immune response and reduce vaccine production costs, with few exceptions, adjuvants are foreign to the body and cause adverse reactions”, writes Australian scientist Viera Scheibner Ph.D, (1) The most common adjuvant for human use is an aluminum salt called alum derived from aluminum hydroxide, or aluminum phosphate. A quick read of the scientific literature reveals that the neurotoxic effects of aluminum were recognized 100 years ago. Aluminum is a neurotoxicant and has been linked to Alzheimer’s disease and other neurological disorders.

The article cites Boyd Haley for the proposition that vaccines which contain both aluminum adjuvants and mercury based preservative, greatly magnify the neurotoxic effects. The article comments on squalenes used in vaccines and a process called molecular mimicry and ties molecular mimicry to the autism epidemic:

Tying molecular mimicry to the autism epidemic, many children have regressed into autism spectrum disorders after injection with the triple live virus MMR (measles,mumps,rubella) vaccine. Dr.Vijendra Singh’s research at Utah State University suggests that auto-antibodies are attacking myelin in these children. He has shown that many autistic children have auto-antibodies to brain myelin basic protein (MBP) as well as elevated levels of measles virus antibodies. “Immunoblotting analysis showed the presence of an unusual MMR antibody in 60% (75 of 125) of autistic children, but none of the 92 normal children had this antibody. In addition, there was a positive correlation (greater than 90%) between MMR antibody and MBP auto-antibody, suggesting a causal association between MMR and brain autoimmunity
in autism. This is one of the most important findings in autism to date, which prompted us to link measles virus in the etiology of the disorder”, writes Dr. Singh. (8,9,10)

These excepts are a small selection of the information contained in this article which I recommend for reading by anyone who is interested in reading beyond the standard public health authority assurances about the possible consequences of the still not tested Swine Flu Vaccines. Although I have extracted sections directly referencing autism the article covers many other issues associated with vaccine adjuvants.

autism

Autism Rising: 1 in 100 US Children Have an Autism Disorder

The images above are taken from the autism section of the 2007 US National Survey of Children's Health and indicate that 1 in 100 American children in the 2 to 17 age range have an autism spectrum disorder. That figure is yet another startling indication of the existence of a real autism crisis. Those who deny that environmental factors cause, in whole or in part, autism disorders, will have less and less credibility as 1% of American children are reported autistic. The expanded definition of autism disorders to include Aspergers Disorder in 1993-1994 is irrelevant to an increase from 1 in 150 reported by the CDC in the past few years to 1 in 100 now as reported by the NSCH. The 1 in 100 figure is in line with the UK figures as well although there a recent study suggests the actual rate may be closer to 1 in 58.

This new report is startling but where is the mainstream media on this? Why is the same media that have been busy ridiculing parents who question possible vaccine autism connections silent when public authorities provide information showing dramatic increases in autism? Since my son was diagnosed with autism in 1998 the reported figures for autism have changed from 1 in 500 to 1 in 250 to 1 in 166 to 1 in 100. Does the 1993-4 diagnositc definition change really explain fully the relentless increase in reported cases of autism over the past decade from 1999 to 2009?

And why are people like Dr. Tom Insel of the Inter Agency Autism Coordinating Committee silent? Autism researcher Teresa Binstock pointed out in 1999 that autism research funding allocations had been weighted heavily in favor of the "it's gotta be genetic" model of autism research funding allocations. The authors of the recent University of California Davis study which suggested environmental factors were involved in the increasing autism numbers in California have highlighted the neglected funding for environmental autism research:

“Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones. We need to even out the funding,” Hertz-Picciotto said."

Over the past decade the numbers of autism cases have skyrocketed and yet the autism research funding still reflects the "it's gotta be genetic" model that Binstock outed in 1999. What is wrong with this picture? What is wrong with the decision makers who refuse to authorize funding to research environmental causes of autism? Do they have conflicts of interest that tie their hands or are they just too stubborn and tied to outdated paradigms to change?

In his recent appearance before Senator Harkin's subcommittee Dr. Insel desperately insisted that a comparative study of vaccinated and unvaccinated populations could not be done for ethical reasons even though unvaccinated populations already exist in the US and even though contrary statements have been made by people like Dr. Bernadine Healy, Dr. Julie Gerberding, and Dr. Duane Alexander. I DO NOT allege ANY conflicts of interest on the part of Dr. Insel. He seemed more like a true believer who does not have an open mind to arguments that challenge his views about vaccine safety.

Autism research funding has been heavily weighted toward genetic causes of autism. It is time to provide some balance as researcher Irva Hertz-Picciotto said and conduct environmentally based autism research. It is time to research all possible environmental causes of autism, including possible vaccine factors, as Dr. Jon Poling has stated.

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A REAL National Autism Strategy Request for Mr Ignatieff and Mr Layton

Dear Honourable Leaders, MP's and Senator Munson

I am the father of a 13 year old boy with Autistic Disorder, assessed with profound developmental delays living in Fredericton, New Brunswick. I have addressed this email correspondence to Mr Ignatieff and Mr Layton as the leaders of the two parties, Liberal and NDP, that have recognized the need for a real National Autism Strategy. I have also copied some of the members of both parties in the House, and Senator Munson, who have made outstanding individual efforts on behalf of autistic children and adults in Canada and who have fought for a real National Autism Strategy.

The motion by Mr. Stoffer and our former Fredericton MP Andy Scott achieved recognition by the House of Commons of the need for a National Autism Strategy. Unfortunately the private members bill brought by Mr. Shawn Murphy from PEI which would have done so much to ensure that autistic children across Canada have real access to evidence based autism interventions was defeated notwithstanding the solid support demonstrated by both of your parties. I humbly ask that both the Liberal and NDP parties not give up on autistic children and adults and continue the fight for a real National Autism Strategy one that would see a federal government commitment to funding evidence based autism interventions and decent residential care for all Canadians with Autism Spectrum Disorders regardless of their province of residence.

Canadians have moved from province to province seeking appropriate help, particularly Applied Behavior Analysis (ABA), for their children. Gains have been made by provincial action across Canada but there are huge gaps in the services available. As a New Brunswicker I am proud of what our province has done with relatively limited resources to help autistic children but much more needs to be done here, particularly for autistic youths and adults in need of decent residential care. Even a family with two medical professionals left Nova Scotia to seek ABA help for their autistic child in Manitoba. In Ontario, where I visited in the spring of 2008 as part of a national autism advocacy tour organized by our good friends from FEAT BC, more autistic children are languishing on waiting lists than are actually receiving treatment.

I remind you of the well informed comments of Ms Dhalla when she spoke on behalf of the Liberal Party in the House of Commons, on October 27, 2006, in support of the Scott-Stoffer motion calling for a National Autism Strategy:

"We must make sure that regardless of where one lives in Canada, whether it is on the west coast, the east coast or in the Northwest Territories, all children who are affected by autism actually have the opportunity to receive the treatment they need throughout their lives until the age of 18.

I am sure this national strategy is going to ensure that we have the proper investment to do further research into whether there are other treatment options available and into how this type of condition can be prevented. We must invest in a comprehensive strategy to address this very complex disorder. (1420)

As I have mentioned, we know the cost is upwards of $70,000 per year, but we have to ensure we give the opportunity to these families so their children can obtain treatment and provide them with the quality of life they need. These families should be able to do this without having to mortgage their homes, or sell their cars, or go through those financial hardships. Many families that have been affected by autism simply cannot afford this treatment.?"

I ask that both the Liberal and NDP parties keep the need for a real National Autism Strategy in mind as you go forward and work toward a strategy which sees Canada invest in autistic children and adults regardless of their province or territory of residence. Canada is more than a place where one's health, one's quality of life depends entirely on jurisdictional boundaries. Our national health care scheme generally, which results in longer life expectancy and greater infant survival rates than that of our good neighbours to the south, is a testament to that fact.

Please do your best to ensure the enactment of a REAL National Autism Strategy for all autistic Canadians.

Respectfully,

Harold L Doherty
Fredericton, New Brunswick

autism

National Autism Strategy Fredericton Flashback October 18, 2003

The struggle for a REAL National Autism Strategy has been waged for many years across Canada.

In Fredericton, New Brunswick representatives of a group called FACE, the Family Autism Centre for Education, met shortly after being formed, with Fredericton area MP Andy Scott to begin discussions about autism and ask for his assistance in seeking a national approach to dealing with Canada's autism crisis. I had the honor of being one of those early representatives meeting with "Andy" as he has been known here in Fredericton.

On October 18, 2003, at a high profile event at the Fredericton Farmer's Market which included guest speaker and former Premier Frank McKenna, amongst others, Andy Scott dedicated himself to pushing then Prime Minister Martin to implement a federal autism program as set out in this excerpt from a Tali Folkins article in the NB Telegraph-Journal, October 20, 2003:

"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 was ultimately successful, with NDP MP Peter Stoffer, in getting a motion passed, during the current reign of Prime Minister Harper, which acknowledges the need for a national autism strategy but it does not begin to address the funding issues needed to ensure access to effective evidence based interventions such as ABA for autistic children regardless of where they live in Canada. Nor is anything in place to address the needs of Canada's rapidly growing autistic adult population, including the need for multi-level residential care facilities for the more severely affected by autism disorders.

The fight for a National Autism Strategy in Canada has been ongoing for several years. Here in New Brunswick it long pre-dates Andy Scott's 2003 announcement. At present we have a mediocre web site, a sham National Autism Symposium with parent activists excluded and national health bureaucrats that dole out research funding to researchers who do little or nothing to help advance our knowledge of environmental causes of autism or possible treatments. And there is not even mention of the need to flow funds to ensure that autistic persons across Canada who need decent residential care receive it regardless of which province they live in.

It has been, and will continue to be, a long struggle but we must not quit. We must keep fighting. We have to keep fighting for a REAL National Autism Strategy for autistic Canadians.

autism

Conor and Dad Enjoy a Beautiful Day

Our "Weather Whine" buttons were in danger of wearing out this summer as June and July were marked by a lot of cold, gray, cloudy skies and rain. August though has brought some beautiful weather including this Saturday morning. Dad and Conor headed out once again to enjoy it all.

autism

Autism Jabberwocky Puzzled by Michelle Dawson's Obsession With Trash Talking ABA

Autism Jabberwocky (MJ) expresses his puzzlement with Michelle Dawson's opposition to ABA as an intervention for autistic children in Michelle Dawson. MJ notes the overwhelming evidence against Ms Dawson's anti-ABA position, the lack of a clear basis for her ethical concerns, and the lack of any reported life experience with ABA that would explain her views and actions in opposing ABA.

MJ also notes the fact that Michelle Dawson "has a bad habit of discouraging parents from using ABA to help their children". As anyone who reads this blog knows I share MJ's concerns about Michelle Dawson's ABA (anti0ABA) views, particularly when parents of newly diagnosed autistic children are discouraged from seeking ABA help for their children.

autism

Swine Flu (H1N1) Vaccine Safety Questioned by Drug Policy Researcher and Professional Ethics Director

Some parents of autistic children have, for many years, questioned the safety of vaccines, vaccine ingredients and vaccine schedules in connection with the dramatic rise in autism spectrum disorder diagnoses. The standard response is that vaccines are safe and parents are typically branded as hysterical or ignorant or both. These responses ignore the fact that flu vaccines containing thimerosal are still given to pregnant women and that mercury based thimerosal crosses the placenta. The official "don't worry, be happy" responses also ignore the cumulative amounts of mercury from the multitude of vaccinations young children receive. With the Swine Flu (H1N1) panic upon us some parents question the safety of the Swine Flu vaccine being rushed into production without safety testing. They are not alone.

In What do we know about the vaccines' safety? Not enough , published in the Globe and Mail, Alan Cassels a drug policy researcher at the University of Victoria and Arthur Schafer, director of the Centre for Professional and Applied Ethics at the University of Manitoba, point out the fact hat public health authorities simply do not know whether the Swine Flu vaccine will be effective or whether it will be safe:

Public-health officials around the world seem to be suggesting there is a possibility this flu pandemic could get much worse, that is, become more lethal. If that were to happen, it seems “obvious” that wise people should seek to have a preventive flu shot or access to a pill. Many people will say to themselves: Why not get the shot, just to be sure?

Part of the answer to that question is that until a million people roll up their sleeves to get the vaccine, no one can be sure how safe it will be. This is also a decisive answer to those who favour making vaccination mandatory.

Some public-health officials have described flu vaccines as “highly effective,” but the internationally recognized Cochrane Collaboration (which accepts no money from the pharmaceutical industry) did a systematic review of all high-quality randomized trials (25 in all) studying influenza vaccination. They concluded that “the evidence does not support universal immunization of healthy adults.” Period.

Cassels and Schafer point out that this is not the first time public health authorities have recommended action for treating flu without evidence to support the safety or effectiveness of that course of action. The quote above references a review of influenza vaccination generally which did not support universal immunization of health adults. The authors also discuss Tamiflu and Relenza, anti-viral drugs which are supposed to reduce the severity and length of flu but which have been shown by scientific testing to be little or no better than a placebo. Worse, a recent international study reveals that about 50 per cent of children who have taken Tamiflu experienced side effects from gut problems, diarrhea, to serious, neuropsychiatric problems. Cassles and Schafer take authorities to task for glossing over the problems with these anti-viral drugs.

I have in the past criticized the Globe and Mail for repeating the "vaccines can do no wrong" mantra of public health authorities and marginalizing parents who express concerns about vaccine safety. I commend the Globe and Mail for offering this thought provoking article using credible sources to provide a different perspective on the current Swine Flu Pandemic/Panic and the rush to flood the world with an untested vaccine.

autism

Autism and ABA Abuse of Autistic Children - A Case Study, Part 4

Conor did not receive intensive early ABA intervention for 40 hours a week from ages 2-5 as per the ideal standard but he has received ABA intervention for several years including in a school setting. It has made a positive difference as he has acquired substantial communication skills that did not exist at the beginning and he has functioned well in a variety of environments. Self injurious behaviors, and aggressive behavior toward others, have been reduced very substantially.

A number of gains have been made, and Conor has learned much, but at what horrible cost to Conor's innate being ... his true "autie" self ? Has he been turned into a cold hearted, robotic personality responding to commands but offering nothing genuine of himself to the world? In the pictures below Dad has just returned home from an out of town court proceeding looking weary, disheveled, in need of a haircut (and more exercise) and Conor sees an opportunity for some fun with Dad. Are these pictures more evidence of an ABA induced robotic personality?

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"Radical" Autism Treatments - HBOT AND Stem Cell Treatment

They are not choices I would make for autism treatments for my son. HBOT and Stem Cell therapy for autism disorders are by my understanding both invasive treatments and both carry some risk to the extent at least that the full effects of these treatments on the neurological development of young children are essentially unknown at this point in time.

The bottom line for me is that neither HBOT nor Stem Cell treatments are considered to be evidence based effective autism treatments by any credible authority. Conor has received ABA; although not much during the prime 2-5 year age range due to lack of available services. ABA has helped Conor in a number of different areas but it is not a cure.

Dad: Radical Treatment Helping Son With Autism Recover is the story of an "Autism Dad" who took a different approach than I have taken. Instead of going the evidence based approach as I have done in seeking ABA intervention for Conor Daniel Faiella has sought, at considerable expense, HBOT, and more recently Stem Cell treatment, for his autistic son Matthew. Daniel's anecdotal evidence is that his son has shown dramatic improvement going from 2 word sentences to complete sentences.

Although I would not seek an invasive, unproven autism treatment for my son, I hope that the procedures being followed by the Faiella family are done safely. It would be helpful if the procedures and results of the treatments are recorded for study purposes. HBOT and Stem Cell Treatment should also be the subject of study by the appropriate research authorities since the treatments are in fact being provided to autistic children anyway.

I hope that young Matthew Faiella suffers no harm and that he continues to make progress and fully recovers from his autism disorder. In a world where parents are increasingly under attack for trying to help their autistic children I thank the Faiella family for having the courage to share their story with all of us.

The Faiella family has a blog detailing their experiences with various treatments: Mild Hyperbaric Oxygen, Adult Stem Cell Therapy, & Cranial Electrical Stimulation.

autism

Please Endorse "Canada Needs a REAL National Autism Strategy "

There are HUGE discrepancies from one province to another in Canada when it comes to the availability of ABA and evidence based treatments for autism disorders. Alberta has long had top tier funding of ABA treatment. New Brunswick has done well with much more limited resources but is need of shoring up. Nova Scotia has an immoral lottery system that determines which autistic children receive autism treatment and which do not. Some provinces and territories, even Ontario traditionally a leader in Canada is in desperate need of assistance in addressing Canada's autism crisis as many of Ontario's autistic children languish on interminable waiting lists. Canada needs a REAL National Autism Strategy and we needed it yesterday.

Please visit Parliament2 Top Priorities for Canada, register and endorse Canada Needs a REAL National Autism Strategy.

autism

Autism, Conor, Schedules and Haircuts

The summer months, with no school, and with much less structure and routine, are difficult at times for Conor. We do try, as much as possible, to keep structure and build activities into each day for him. Lately we have been putting a schedule on a kitchen wall which Conor reads and makes a mark as activities are completed or are about to be undertaken. This appears to help Conor keep from getting anxious as he sometimes does when structure and routine are not as consistent as during the school year.

We also used the schedule to help prepare Conor for a badly needed haircut as you can see in the middle "before haircut" picture below. The after haircut picture follows. The shop where he gets his haircut now is located in a mini mall anchored by a Price Chopper store so we described it as Price Chopper haircut to let Conor know where he was going. (Conor did really well, sitting quietly throughout his haircut, although we don't attribute that solely to the schedule by any means. He has come along way with remaining calm during haircuts over the past few years). We don't try to put too much detail into the schedule leaving the spaces between listed activities open to adjust to his preferences and our ability to facilitate activities. The schedule seems to be helping.

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