Aquaholics Surf Shop in Kennebunk, Maine Loves Special Needs Kids!

Wow what a great day we had yesterday!

Nanci Grenier Boutet owns the Aquaholics Surf Shop in Kennebunk, Maine and has a heart for our kids. So three times in the Summer, the third Tuesday of June, July and August, she gives a big shout out to all the local surfers to come to Kennebunk Beach and take our special little ones surfing on their Special Surfer Night.

We went yesterday for the first time, Chandler surfed until he was a Popsicle, and loved every minute of it. Tommy, Chandler's cutie pie surfing coach, comes down from his home in Quebec to vacation in Maine with his family in August, and he takes part in the event while they are here. Chan had a great time with Tommy and learned how to say, "Merci, Tommy" at the end of the day.

Here are the best shots from yesterday. It was so wonderful to see all our little guys loving the time they were having in the water, their dad's being able to do real father son sports bonding stuff that happens so rarely with our kids and, of course, to have a nice zone of love around our kids where they could be their weird, loud, difficult, haphazard selves with out a judgmental look or nasty comment as far as they eye could see.

Thanks so much to Nanci for doing this and thanks so much to all the loving, supporting, understanding surfers who made our kids day! All my pictures from the day will be posted here, and anyone connected with the event has my permission to download and use them in any way they like (as long as it is respectful to those in the images, of course). If anyone connected with the event would like hi res images, contact me at mail@adventuresinautism.com

These are the best pics of the day. Fog rolled in at the end, so those are not as clear, but as you can see... a good time was had by all.

My Webster

Chandler having a ball in his wet suit

Sensory issues in full effect, but didn't end up standing in anyone's way

For this little guy, getting his wet suit on was the hardest part, but dad got him through it.

Nick meets his teacher, Josh Wilbur

The instruction begins

Pam preps Scotty for the water

Loucas learning how to pup up

Some took things slow and easy

Some were a little bolder

But they were all loving it

Don't miss the guy in the back

Nanci introduces Chandler to Thomas Duplessis who taught him.  Chan was so eager to get in the water that daddy never got the chance to change into his swim suit.

Happy guy

Chan's first big ride

Loucas and Chandler decide they are ready for the big waves

Loucas totally rocks on the surfboard

This guy was great.  He got up several times and clearly is on his way to really surfing

Picture of the day!  Don't know who is happier, Stephen for surfing so well, or his friend when he sees Stephen!

This little girl was so precious.  Every time I saw her, just huge grins while being out on the water.  It was infectious.

As the fog was rolling in, I ran down to the end of the beach to catch these two.  Biggest shredders of the day.

I think that this might be my favorite.  Levi Wiley, God bless him, is working his butt off to make Zeke happy, and that joyful face is the big pay off.

Thank you for being there for our kids.

News piece on Nanci's program: http://www.wmur.com/chroniclevideo/24606545/index.html

Autism Speaks, NOT a Charity Recommended by the Better Business Bureau

Came across this today:

BBB Wise Giving Report for
Autism Speaks

BBB Wise Giving Report issued September 2009
BBB Wise Giving Report expires September 2011

Does not meet one or more standards
This charity does not meet one or more of the 20 standards for Charity Accountability.

http://www.facebook.com/group.php?gid=109130859120272

Did Anyone Know that the CEO of Reuters was on the Board of Merck?

Wonder if it skews Reuters coverage of let's say... MMR or Gardasil or RotaTeq or....

Thomas H. Glocer

Chief executive officer, Thomson Reuters Corporation (information and services company for businesses and professionals). Director, Thomson Reuters Corporation, Partnership for New York City. New Merck director since November 3, 2009

No mention here that the CEO of the news agency reporting had a very vested interest in seeing MMR exonerated, now is there. And Dr. Wakefield said the charges were unjust... did they look into his claim?

British ban for doctor at heart of MMR vaccine row

By Kate Kelland, Health and Science Correspondent

LONDON | Mon May 24, 2010 12:44pm BST

LONDON (Reuters) - A doctor whose claims of links between vaccination and autism triggered a scientific storm before being widely discredited was struck off the medical register Monday for professional misconduct.

Dr Andrew Wakefield's 1998 study led many parents to refuse to have their children vaccinated with the measles, mumps and rubella (MMR) shot and has been blamed for a big rise in measles cases in the United States and parts of Europe in recent years.

A disciplinary panel of the General Medical Council (GMC) found that Wakefield had acted in a "dishonest," "misleading" and "irresponsible" way during his research.

The ruling means Wakefield, who now lives and works in the United States, can no longer practise as a doctor in Britain, but can continue to work in medicine outside the UK.

His paper, published in The Lancet medical journal but since widely discredited, caused one of the biggest medical rows in a generation.

"The panel has determined that Dr Wakefield's name should be erased from the medical register," the GMC said in a statement.

Wakefield had failed to disclose various details about the funding of the study -- a failure the GMC described as "dishonest and misleading" -- and had acted "contrary to the clinical interests" of the children involved in his research.

Striking Wakefield off the medical register was "the only sanction that is appropriate to protect patients" and was in the wider public interest. It was also "proportionate to the serious and wide-ranging findings made against him," the statement said.

Data released last February for England and Wales showed a rise in measles cases of more than 70 percent in 2008 from the previous year, mostly due to a fall in the number of children being vaccinated. Vaccination rates are now recovering.

Terence Stephenson, president of the Royal College of Paediatrics and Child Health, said the false suggestion of a link between autism and the MMR vaccine had caused "untold damage" to vaccination programs.

"We cannot stress too strongly that all children and young people should have the MMR vaccine. Overwhelming scientific evidence shows that it is safe," he said in a statement.

Wakefield defended his work, and said the GMC had sought to deny that the case against him was related to whether the vaccine was safe, and specifically, whether it caused autism.

"Efforts to discredit and silence me through the GMC process have provided a screen to shield the government from exposure on the ... MMR vaccine scandal," he said in a statement.

The GMC said his refusal to accept that he had made mistakes meant that a temporary suspension of Wakefield's licence was not enough and he should be banned altogether.

"Dr Wakefield's continued lack of insight as to his misconduct serve only to satisfy the panel that suspension is not sufficient and that his actions are incompatible with his continued registration as a medical practitioner," it said.

(Editing by Andrew Roche)

Cal State Long Beach Believes Chemical Plasticizers May Contribute to Autism

cid:_1_0E51C98C0E51C4D00074D2AC8825777D
OFFICE OF PUBLIC AFFAIRS
1250 BELLFLOWER BLVD. * LONG BEACH, CALIFORNIA 90840-0116 * 562/985-4134 FAX 562/985-8109

PRESS RELEASE



FOR IMMEDIATE RELEASE
August 12, 2010
F2010-024


Cal State Long Beach Biochemist's Research Supports Premise That
Chemical Plasticizers May Contribute to Autism and Alzheimer's Disease



Who knew that brine shrimp—the tiny creatures popularly known as “Sea-Monkeys”—could reveal problems with chemicals found in plastics or even contribute to potential treatments for neurological conditions such as Alzheimer’s disease and autism?

Roger Acey, a professor of biochemistry at California State University, Long Beach (CSULB), and students in his lab have been studying the biology and genetics of embryonic development, using brine shrimp, Artemia salina, as a biological model. He is particularly interested in how environmental contaminants affect development.

“I think all baby boomers understand Sea-Monkeys,” Acey explained. “As kids, you could order them from suppliers advertising in comic books and grow them at home.” Artemia have long been used in scientific research and remain popular in science education at school and home. The shrimp grow up to three-quarters of an inch long and can live for some time once hatched.

Acey’s lab initially looked at how exposing the shrimp to toxic metals like copper, mercury, cadmium, etc., could affect their development. While continuing this successful work, which led to discovery of a shrimp protein that can capture metals, Acey took his ongoing research with Artemia in another direction.

“We began looking at plasticizers and how they might affect embryonic development,” he said. “We started looking at phthalate esters—compounds that give plastic bottles their malleability. They’re found in PVC (polyvinyl chloride), blood bags, plastic tubing, cosmetics and children’s toys, and are well known environmental contaminants. They have been reported to be teratogens (causing birth defects), carcinogens and endocrine disruptors. Endocrine disruptors are compounds that resemble the structure of estrogens and mimic the activity of these hormones. There are examples of populations of fish that are essentially all female due to phthalate ester contamination. Most recently, phthalate esters have been implicated in Type II diabetes.

“We made a series of phthalate esters (phthalates) with increasing the carbon chain lengths and started looking at the effect of these compounds on developing shrimp,” he continued. “Diethyl and dimethyl are non-toxic; di-n-propyl was slightly toxic; but di-n-butyl (DBP), which is the most commonly found phthalate, turns out to be the most toxic.”

As the shrimp develop, they produce an enzyme that metabolizes the DBP, he said. “At first, we called the enzyme DBPase. As soon as the shrimp hatch and begin to develop, DPBase activity increases dramatically. If you expose the shrimp to phthalate during the early period of development, they died. If you expose the shrimp to the phthalate later in development, the compound is no longer toxic. The idea is that there is a well-defined period of development when the embryos are sensitive to the phthalate. Therefore, we began looking for a specific biochemical event that was impacted by the DBP.” He has since identified DBPase as butyrylcholinesterase.

He noted that the shrimp were being affected by DBP at the point where their nervous system was beginning to develop, adding that shrimp have a cholinergic nervous system similar to humans in that they both use a chemical neurotransmitter called acetylcholine.

He and his students have since used umbilical cord stem cells to study the role of butyrylcholinesterase in developing neurons and the effect of DBP. “After the stem cells are activated and begin to develop into a neuron, the DBP becomes toxic. We think what is happening is that the DBP prevents the butyrylcholinesterase from performing its normal biological function. We’re currently in the process of determining the exact function of the enzyme," Acey said.

Acey is interested in how plasticizers might be connected to the dramatic rise in autism and Alzheimer’s disease. A recent study has shown that rat fetuses exposed to DBP develop symptoms characteristic of autism. "If you think about it, this suggests compounds that interact with butyrylcholinesterase could induce neurological problems,” he said.

That led him to consider another plasticizer, bisphenol A, commonly called BPA, which is being widely studied for its possible toxicity. Acey’s group has shown that BPA is an inhibitor of butyrylcholinesterase. “Again, the concern is that since this compound interacts with butyrylcholinesterase, it may have a pronounced effect on neuron development,” he said. Acey believes every effort should be made to prevent exposure of pregnant women and infants to these types of compounds.

“Interestingly, the level of brain butyrylcholinesterase is significantly increased in Alzheimer’s patients,” he said. Current therapeutics used in the treatment of Alzheimer’s disease target butyrylcholinesterase, so he and CSULB Professor Ken Nakayama are collaborating on further examining the biochemistry of this enzyme and its possible connections to Alzheimer’s disease.

“Dr. Nakayama, an organic chemist, had a series of compounds he wanted tested on an enzyme from bacteria,” Acey said. “I suggested we test his compounds on butyrylcholinesterase. The results of the experiments revealed that the compounds are potent inhibitors of butyrylcholinesterase and, as such, are potential therapeutics for the treatment of Alzheimer’s disease. Alzheimer’s patients lose their cognitive functions as a result of the decrease in the level of a specific neurotransmitter. Compounds that inhibit butyrylcholinesterase result in an increase in the level of neurotransmitters —the compounds responsible for memory— and the patients begin to recover their memory.”

They’ve applied for a patent for the compounds and are preparing to write a grant proposal to fund further studies to demonstrate whether the compounds can cross the blood-brain barrier. Acey remarked that some autistic children are responding to certain Alzheimer’s drugs, so the hope is that these compounds might someday be the basis for new medications to treat both conditions.

Acey’s research has been funded by grants from CSULB, the March of Dimes, the National Institutes of Health, and the California State University Program for Education and Research in Biotechnology (CSUPERB).

To learn more about Acey’s research, visit http://chemistry.csulb.edu/roger-acey.html.

Lives Lost to Autism

This week I started another blog. Lives Lost to Autism. It has stirred up some discussion, so I thought I would address it here.

Five years ago I got into a discussion with some in the autism community on the neurodiversity side of things on whether or not it was wrong to try to 'cure' children with autism if it changed their personality. I argued that a) if getting poisons/bacteria/viruses out and getting nutrients/oxygen in, making the individual more healthy, changes some personality traits, then those traits were not a part of the real personality anyway, b) that improving health CANNOT make them into someone that they are not and c) even if it did fundamentally change someone's personality, it was worth it in the end because autism is a threat to the individual who has it, and even to some of the people that surround them.

To illustrate my point, I planned to spend two months posting the stories where someone with autism was put in danger or killed as a result of their autism, stories that I had avoided like the plague because they truly crippled me with misery (my boy is a runner). I didn't last two months, but there were enough stories to illustrate my point in a few weeks, with members of the ND community even calling many to my attention things that I had not seen, so I cut it short int order to avoid the pain of the stories themselves.

The series can be found here: Autism is Dangerous

The discussion was primarily between myself Wade Rankin and Kevin Leitch. You can read everyone's input there. Kevin didn't think it was a problem with me writing about it at the time, didn't have a problem with Kathleen Seidel keeping track of autism victims, has not had a problem with all the ND bloggers that discuss the tragic ends that those with autism meet, but he does not like it that I am doing it now.  Which is also odd because, as Wade points out, Kevin came down on both of us for not immediately picking up the Katie McCaron story. (I guess I am damned if I do and damned if I don't.) I have read his criticism and think that his fundamental point, that autism is not a killer, is just flat out wrong... as demonstrated by the fact that... well the fact that the blog illustrates in the first place. That autism directly kills a lot of people.

Last weekend 12 year old Frank Marasco was pulled from his burning home. He promptly ran back inside, back up to the second floor and died. If he did not have autism, he would have had the good sense to stay out of the house. So yes... autism killed him.

Autism kills the children who wander away from safety and drown. Autism killed our Ashley Brock.

Autism killed Bryan Nevins. He died simply because he could not open a car door and get out of a hot car.

When I wrote the initial series, Chandler was then three.  He is now eight.  After Ashley's death, it hit so close to home I knew I could not ignore these stories any more and I have learned to stomach these stories a little better (though not much as Web kept popping his head in my office this week and asking, "mommy, why are you crying"). Mostly because the stories are increasing in number and brutality, and they are not effecting autism policy other than a few local police departments (God bless them) that are putting in tracking systems.

The horrible fact is that autism makes the world a very dangerous place for people like my son. Threats from with in and from with out. I was handed another tearful reminder of this last year as my father, being the responsible grandfather that he was, decided to take out life insurance policies for my boys. He called to tell me that he had taken a policy out for Webster, but that he could not get a policy issued for Chandler until he was ten years old. Because he had autism.

Because insurance companies, whose bottom line depends on making good bets, have these things called actuarial tables, which tell them who is likely to live and who is more likely to die. And our kids, until they are ten years old, are not a good bet for the insurance company.

But this does not enter into autism policy at all. I have not read anywhere, from any official source, that our children are at high risk for premature death. It is time for that to change.

Three things inspired me to finally do it. The first was reading that five children had died of pertussis this year, thus triggering 'epidemic' status. Autism killed five children in April alone (autism awareness month) but the health authorities continue to yawn when our kids die. Are their lives not worth as much as those who die from viral illness?

The second was someone commenting on facebook that this has been the 'summer of death'. The emotional crush of these stories that keep coming and coming has been heavy in the past few months. So I finally decided if I am going to feel like crap from all this death, I might as well try to put it to good use.

The third was a conversation with another autism mom about her super fun experience. She got a call from her son's school that her son was missing. They were on the playground, there was a cloudburst, and everyone, including the aid that was supposed to be watching her son, ran inside. It took several minutes in the class room before they realized that he was missing. The boy was found, hiding in the woods sobbing, and the special ed director acted like this was no big deal.

Now parents can send this link to irresponsible educators, oblivious health professionals, clueless policy makers, insensitive family members and anyone who does not quite get just what kind of risk our kids are in when they have autism.

The government does not even track, in any way, how many children die (or kill others) as a result of having autism and becoming victims of their associated medical conditions, the drugs that are being used to treat them, their own lack of a sense of danger, threats from other people who can do them harm, or combinations of these factors.

And as I began collecting stories this week, I began realizing that there are so many more stories than any of us though were out there. It will build slowly and we will work backward, but send stories that you come across and we will get them all up eventually.

In deciding which stories to include, we basically ask the question, "if this person didn't have autism and its accompanying medical conditions, would the incident that took their life have occurred".

Other parents have come forward to help me keep this archive, which is good because doing this is miserable and there is no way I could keep it up on my own. At some point I just stopped reading the stories and was cutting and pasting like a zombie. Thanks to those who have stepped forward.

Bottom line, it is long past time for the autism community to face this.  If we can't, then there is no way the policy makers will.

And to those who don't like the blog, or see autism as a blessing... I understand where you are coming from, but I am sorry... I am just not with you on it.

People with autism a precious. But autism sucks.

Update:

Causes of Death in Autism
Robert M. Shavelle, David J. Strauss and Jane Pickett

Journal of Autism and Developmental Disorders
Volume 31, Number 6, 569-576, DOI: 10.1023/A:1013247011483

Abstract
The objective of this study was to determine which causes of death are more frequent in persons with autism, and by how much, compared with the general population. Subjects were 13,111 ambulatory Californians with autism, followed between 1983 and 1997. The units of study were person-years, each linked to the subject''s age, sex, and cause of death (if any) for the specific year. Observed numbers of cause-specific deaths were compared with numbers expected according to general population mortality rates. Standardized mortality rates (SMRs) were computed for each mental retardation level. Elevated death rates were observed for several causes, including seizures and accidents such as suffocation and drowning; elevated mortality due to respiratory disease was observed among persons with severe mental retardation. Overall, excess mortality was especially marked for persons with severe mental retardation, but life expectancy is reduced even for persons who are fully ambulatory and who have only mild mental retardation.


Autism. 2008 Jul;12(4):403-14.
Mortality and causes of death in autism spectrum disorders: an update.

Mouridsen SE, Brønnum-Hansen H, Rich B, Isager T.

Department of Child and Adolescent Psychiatry, Bispebjerg University Hospital, Copenhagen, Denmark. sem01@bbh.hosp.dk
Abstract

This study compared mortality among Danish citizens with autism spectrum disorders (ASDs) with that of the general population. A clinical cohort of 341 Danish individuals with variants of ASD, previously followed over the period 1960-93, now on average 43 years of age, were updated with respect to mortality and causes of death. Standardized mortality ratios (SMRs) were calculated for various times after diagnosis. In all, 26 persons with ASD had died, whereas the expected number of deaths was 13.5. Thus the mortality risk among those with ASD was nearly twice that of the general population. The SMR was particularly high in females. The excess mortality risk has remained unchanged since our first study in 1993. Eight of the 26 deaths were associated with epilepsy and four died from epilepsy. Future staff education should focus on better managing of the complex relationships between ASD and physical illness to prevent avoidable deaths.

PMID: 18579647 [PubMed - indexed for MEDLINE]

H1N1 Vaccine, Optic Neuritis and Disseminated Encephalomyelitis

Pediatr Infect Dis J. 2010 Aug 3. [Epub ahead of print]
ADVERSE NEUROLOGIC REACTIONS AFTER BOTH DOSES OF PANDEMIC H1N1 INFLUENZA VACCINE WITH OPTIC NEURITIS AND DEMYELINATION.

Lapphra K, Huh L, Scheifele DW.

From the *Vaccine Evaluation Center, Department of Pediatrics, British Columbia Children' Hospital, University of British Columbia, Vancouver, British Columbia, Canada; and daggerDivision of Neurology, Department of Pediatrics, British Columbia Children's Hospital, University of British Columbia, Vancouver, British Columbia, Canada.
Abstract

When a neurologic condition develops after vaccination of a patient, the causal relationship is difficult to determine. We report an unusual case in which neurologic signs occurred in a previously healthy child after both doses of H1N1 2009 influenza vaccine, culminating in bilateral optic neuritis and disseminated encephalomyelitis. A causal association is more likely with repeated injury following influenza vaccination.

PMID: 20686434 [PubMed - as supplied by publisher]

1983 - 23 Doses of Vaccine, 2010 - 70 Doses of Vaccine

Someone came across the 1983 US recommended vaccine schedule on the CDC's web site:



23 doses of vaccine, birth to 18 years old.

Today our kids are supposed to get 70 doses.

What has changed? Where was the mass death of children to justify more than tripling the number of vaccines children get?

No mass deaths, just the 1985 vaccine act that gave vaccine makers immunity from killing and maiming children, and and a corrupt ACIP.

And as a reminder of the massive scale of this malpractice, there is no testing, none, that tells us what giving children this vaccine schedule (or any vaccine schedule we have ever had) does to our children.

This in the Age of Autism, where 1 in six children have a developmental disability or delay, where autoimmune and neurological disorders are rampant.

Malpractice.

Congress Learns that Autism is Environmental

Wow... so I am watching this hearing, and I can't believe I am watching a hearing in the US Congress.

The horse is out of the barn. I don't know how Offit/Orac/Snyderman et. al. are gonna get it back in.

Autism is environmental. You heard it in congress. Barbara Boxer even learned the word "epigenetics".

Senate Hearings on Environmental Causes of Autism Tomorrow

The hearing will be streamed on this page tomorrow.

Senators to review research on autism's enviro causes
Environment and Energy Daily
August 2, 2010
Gayathri Vaidyanathan, E&E reporter

The Senate Environment and Public Works Committee will meet tomorrow to probe the state of research into the environmental causes of autism and other neurodevelopment disorders.

The Children's Health Subcommittee will hear from U.S. EPA and National Institutes of Health officials on the progress of federally funded work into the causes of autism and other development disorders of the brain.

It is likely that the hearing will be a step toward reauthorizing the 2006 Combating Autism Act, which is set to expire in 2011.

Autism is thought to result from a combination of genetic and environmental factors. While the interaction of genes and mutations is somewhat known by now, little work has been done on potential environmental risk factors. There are likely to be many disparate causes leading to autism.

The incidence of autism spectrum disorders, or ASDs, is increasing in the United States, with one in every 110 children affected. Rates of attention deficit hyperactivity disorder, or ADHD, in children are also rising -- nearly 4.5 million children between 3 and 17 years of age have it, according to the U.S. Centers for Disease Control and Prevention.

The subpanel will hear from Isaac Pessah, director of the University of California, Davis, Children's Center for Environmental Health and Disease Prevention, which has received $7.5 million from EPA since 2007 for research to investigate possible environmental causes.

UC Davis is working on a project called MARBLES (Markers of Autism Risk in Babies -- Learning Early Signs) to identify early predictors of autism, whether genetic, environmental or immunologic. According to the project proposal submitted to EPA, the project will look at whether autistic children are differently exposed to metals, pesticides, polybrominated diphenylethers and other chemicals.

The work is a corollary to a long-term study called CHARGE in which UC Davis researchers are casting a wide net to catch possible environmental contributors in a group of 2- to 5-year-old autistic children. They are screening for pesticides, metals, flame retardant compounds, viruses and bacteria and pharmaceuticals.

UC Davis and other groups are also receiving money from NIH's National Institute of Environmental and Health Sciences and National Toxicology Program, and the subcommittee will hear from the program's director, Linda Birnbaum.

NIH is funding a study together with the nonprofit Autism Speaks that is enrolling mothers who already have one autistic child and are again pregnant to study exposures during fetal development.

The annual cost of caring for people with autism is $35 billion, according to Geraldine Dawson, chief scientific officer at Autism Speaks.

NIH has provided nearly $225 million for research, which Dawsom called miniscule. The funding comes from the Combating Autism Act, which authorized $7 billion for autism-related work including screening, education, intervention and research.

"President Obama has listed autism as one of three health concerns to be combated in the United States," Dawson said. "The current act is a step in the right direction, but due to the magnitude of the public health challenge that autism presents, we need a great deal more funding."

The rate of children with the disease has risen by 600 percent in the last decade, a number so dramatic it cannot be explained solely by better diagnosis, Dawson said.

Schedule: The hearing is tomorrow at 10 a.m. in 406 Dirksen.

Witnesses: Paul Anastas, assistant administrator of the Office of Research and Development, U.S. EPA; Linda Birnbaum, NIH's director of the National Institute of Environmental and Health Sciences and National Toxicology Program; Isaac Pessah, director of the UC Davis Children's Center for Environmental Health and Disease Prevention; Bruce Lanphear, senior scientist at the Child & Family Research Institute; and Mary Moen, parent.