Discussing Autism

Even though some of us may be on summer vacation Autism Speaks and politicians are still working hard to try to protect our children.

Autism Speaks has linked with the federal government to support and play a significant role in research into the cause, treatment, and ultimately a cure for autism.

They are working diligently to help Congress pass the Mercury-Free Vaccines Act of 2007 (HR 881).

Their statement:

Mercury is a ubiquitous environmental toxin. Exposure to all three of its forms, organic, inorganic, or elemental, can have adverse effects on the developing nervous system. Medical science has known of potentially grave effects of high dose mercury exposure since the late 19th century. Only recently, however, have questions arisen regarding possible associations between mercury exposure and autism.

The debate over mercury and autism escalated quickly because of thimerosal, a synthetic form of organic mercury used as a preservative and antimicrobial agent in vaccines. Thimerosal has been an ingredient in vaccines and biologicals since the 1930s but, with increases in recommended childhood immunization doses, by the 1990s it became possible for a six month old infant to have been exposed to a cumulative dose of organic mercury that exceeded certain limits set by government health agencies. This, paired with the immense growth in numbers of children diagnosed with autism in the 1990s prompted many in and out of the autism community to wonder if there could be a connection.

The body of evidence gathered through epidemiologic research to date does not support a causal relationship between thimerosal in childhood vaccines and autism risk. However, it is very difficult for even the best epidemiologic study to rule out the existence of small susceptible subgroups of children with autism in whom thimerosal exposure may have played a causal role. Since thimerosal-free versions of all childhood vaccines are commercially available and mercury is known to have adverse effects on the developing nervous system, Autism Speaks has chosen to endorse HR 881.

Several states have already passed legislation that limits the use of mercury-containing vaccines. These include: California, Delaware, Iowa, Missouri, New York, and Washington. Bills limiting the use of vaccines containing mercury have been introduced in the following states: Kansas, Nebraska and West Virginia.

Bill Summary Description:

The purpose of the Mercury Free Vaccines Act of 2007 is to amend the Federal Food, Drug, and Cosmetic Act to reduce human exposure to mercury through vaccines. The bill does this through six provisions:

1) Amends the Federal Food, Drug, and Cosmetic Act to deem a banned mercury-containing vaccine to be adulterated.

2) Amends the Public Health Service Act to provide that a vaccine is a banned mercury-containing vaccine if one dose of the vaccine contains one or more micrograms of mercury in any form.

3) Authorizes the Secretary of Health and Human Services to declare that an actual or potential bioterrorist incident or other public health emergency makes the administration of such vaccines advisable for a specified period.

4) Requires the Secretary to prohibit the distribution of banned mercury-containing influenza vaccines that are approved as biological products to: (1) any child under the age of three years old (effective July 1, 2007); (2) pregnant women if the vaccine contains thimerosal (effective July 1, 2007); and (3) any child under the age of six (effective July 1, 2008).

5) Requires the Secretary to revise the vaccine information included with mercury-containing vaccines to include: (1) a statement that indicates the presence of mercury in the vaccine; (2) information on the availability of any mercury-free or mercury-reduced alternative vaccine and instructions on how to obtain such an alternative vaccine; and (3) a recommendation against administration of any mercury-containing vaccine to a pregnant woman.

6) Expresses the sense of Congress that the Centers for Disease Control and Prevention (CDC) should disseminate, with any vaccine-related information, a recommendation against administration of any thimerosal-containing vaccine to a pregnant woman.

Read the full text of HR.881

Read a copy of Autism Speaks’ endorsement letter for HR.881 to bill sponsors Congressman Weldon and Congresswoman Maloney

More information about vaccines and thimerosal from the Institute of Vaccine Safety at the Johns Hopkins School of Public Health and the Food and Drug Administration.

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(cross-posted at My Two Boys)

I am not a doctor, nor am I any sort of medical professional, but it is my personal opinion that many children are mislabeled as ADD, ADHD, and even Autism. Yes, Autism.

I have always very clearly stated that AJ has never had a diagnosis of Autism but that we believe that he may be on the spectrum because of his symptoms. However, he may very well simply be a sensory seeking/avoidant child or a child affected by Institutional Autism. Or, he may be a child affected by heavy metals and environmental toxins.

Every professional we have seen has been very cautious about giving us a diagnosis…perhaps because they don’t know. Is it possible that AJ’s birth mother was malnutritioned during the time she carried AJ?

Very Possible. And I have NEVER ruled that out. But, its hard to grasp.

There is a great new book out that will help all of us with mislabeled or undiagnosed children. Written by Brock Eide, M.D., M.A, and his wife, Fernette Eide, M.D., even Carol Kranowitz is toting it as a fantastic resource for parents.

“As informed physicians and informative writers, the Eides delineate children’s mystifying behavior and ways to help them get in sync. For all of us who care about children with unlabeled or mislabeled needs, this book is a must!”

Carol Kranowitz, M.A.

The Midwest Book Review states that The Mislabeled Child “provides parents, teachers and educators a fine, clear guide to children who are different, how diagnoses often fail, and how to look behind labels to find the basics of a child’s problems.”

To pre-order The Mislabeled Child at 32% off the cover price:

MISLABELED CHILD, THE: LOOKING BEYOND BEHAVIOR TO FIND THE TRUE SOURCES — AND SOLUTIONS — FOR CHILDREN’S LEARNING CHALLENGES

If your child can read and form sentences with words then Touch and Talk could be a great program to aid her in speech communication.

(Touch and Talk) allows the patient a flexible approach for direct spoken communications to family members and caregivers. The patient simply clicks or taps words from alphabetized lists or commonly used phrases and then click the green speak button for fully automated narration of the desired text in a male or female voice. Touch & Talk utilizes large buttons and text to assist the patient in regaining motor control and coordination as a quality of life therapy tool.

It is available for Windows based PC’s, laptop, and touch screen computers.

Go to TouchnTalk.com to download a free trial.

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Does it get any more twisted than that?

Twisted Sister presented a check for more than $17,000 to Autism Speaks today. It was a portion of the proceeds from “Twisted Christmas”, a CD that benefited Cure Autism Now.

More of the proceeds also went to Cure Autism Now.

The band participated in VH1 Classic’s Rock Autism campaign in 2006. According to VH1.com, the campaign was designed to help educate parents and build awareness about autism, a complex neurobiological developmental disorder that lasts throughout a person’s lifetime, and to raise funds for a variety of autism research, advocacy, and support organizations. Autism affects one in every 150 children, with a child diagnosed every 21 minutes. Today, there is no known cause or cure. VH1 Classic aims to galvanize a community of artists and fans in support of this cause.

VH1 Classic also notes MTV and Nickelodeon’s role in autism education;
True Life, I Have Autism

Private Worlds: Kids & Autism

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This is something we have really been struggling with…temper!

Here is a handy chart to log daily temper tantrums.

Here is one to log good and bad daily behavior with simple smiley faces.

A Mood Chart that might help your child recognize their particular moods.

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Salem county is now offering emergency training to their law enforcement, corrections, fire, and EMS workers. They are calling the program Autism Outreach Partnership.

“People with autism can often have accompanying learning disabilities but everyone with the condition shares a difficulty in making sense of the world around them,” Lindenmuth said. “Dealing effectively with individuals who may suffer from this relatively unknown disability, as well as being able to begin to recognize the characteristics, is paramount for those charged with the responsibility to protect and serve the public.”

They feel that by being better educated on Autism they will be prepared to recognize and deal with persons with autism and thus be better prepared to deal with emergency situations.

“Salem County will be setting the benchmark in this arena by pro-actively offering the education countywide,” Lindenmuth said. “In keeping with our philosophy of promoting cooperative shared services, this program will be available to municipalities to participate in and we hope to have 100 percent participation.”

Just like Sheriff Chuck Miller states in the article, I also believe that people who are in charge of protecting the community need to be able to deal with EVERYONE they come into contact with. If emergency personnel are able to deal with individuals who are intoxicated then why can’t they learn to communicate with the special needs population?

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Minus the Sex stuff, as I write mainly about children, I really like this interpretation of Asberger’s Syndrome…written by a person with Asperger’s. Its gutsy, real, personal, gritty, and understandable. It gives me insight into how my son feels in situations and why he does things.

i can organize thoughts in my head more easily if i use a visual framework, and this i always do. anything linear it’s quite arduous to have to work out, i literally have to go in my head, “okay, for step 1, i just said step 1, step 1 means it’s the first one, so i’m gonna put my first finger out right here, and the finger is on the top so it means the first, and now i’m gonna shake my head to try to get me to remember this, step 1 is this (rush of information), and i shake my head again, and say all right, step 1 is… (say it all over again).” it’s a lot of work. i’m not making it up, that’s literally how i have to work it out in my head. instead i much rather prefer to simply write the instructions down, or be given an illustrated chart instead.

To me, this is so much like my son but completely opposite. He prefers everything linear. This, then this, then this. Ah, got it.

This article helped me get it.

Isn’t High Functioning Autism Aspergers or is Aspergers High-Functining Autism? Or, are they not related? I’m confused.

But, there is also a syndrome called Hyperplexia that I have uncovered.

Here is a very interesting article comparing the three.

Hyperlexia Definition:
Hyperlexia appears to be different from what is known as hypergraphia, the urge or compulsion to write, although as with many mental conditions or quirks it is possible that this is more a matter of opinion than strict science. Often, hyperlexic children will have a precocious ability to read but will learn to speak only by rote and heavy repetition, and may also have difficulty learning the rules of language from examples or from trial and error, which may result in social problems.

(more…)

Thomas the Train

Date Filed: June 22, 2007
Court: U.S. District Court
Location: Illinois

HBSS filed a class action lawsuit against the Thomas the Train manufacturer, RC2, claiming the company acted negligently in the production and distribution of its Thomas & Friends Wooden Railway toys.

The toys were produced with red and yellow surface paint that contains lead. The use of lead paint is forbidden and can cause severe injury to young children and exposure to high levels can result in death.

The Consumer Product Safety Commission issued a voluntary recall on June 14, 2007 and the company is offering a product replacement program, but no reimbursement.

The toys in question range in production from January 2005 to June 2007. It is estimated that more than 1.5 million toys were distributed in this period.

If you purchased a toy for your child within the dates stated above you may be eligible to join this suit. You can also send an e-mail to info@hbsslaw.com or call us at 206-623-7292.

HBSS will treat all information received as confidential.

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Lawsuit seeks halt to sale of recalled Thomas toys

By Maurice Possley | Tribune staff reporter
July 4, 2007

RC2 Corp., the Oak Brook toymaker that last month recalled 1.5 million of popular Thomas & Friends railway toys for being covered with lead paint, was hit with a federal class-action lawsuit in Chicago on Tuesday that is seeking an injunction against the sale of its metal train toys.

The lawsuit, assigned to U.S. District Court Judge Matthew Kennelly, is seeking a court order requiring RC2 to “cease production and distribution of all metal toys” reported to the Consumer Product Safety Commission or reported in the media “to have possibly been contaminated with lead paint.”

The Tribune reported last month that a Kansas City, Mo., public health nurse had filed a complaint in 2006 with the federal safety commission after discovering one of RC2’s metal trains tested positive for lead paint. The nurse told the Tribune that the CPSC never investigated her complaint.

A spokeswoman for RC2 issued a statement in response to the lawsuit saying, “The only items subject to our previously announced voluntary recall are the 26 wooden products listed and pictured on our Web site. They represent about four percent of total wooden railway units sold by the company domestically during recall period.

“Though some products in our metal train toy line are similar in appearance to products in the wooden line, they are smaller in scale. None of the metal products is subject to recall. They were produced using different manufacturing and painting processes in different contract manufacturing facilities.”

The lawsuit, filed on behalf of consumers who have purchased the toys or received them as gifts, also is seeking a court order to notify all sellers and distributors of metal toys “to remove such toys from their shelves and to cease sale and distribution … until their safety can be established.”

Last week, Illinois Atty. Gen. Lisa Madigan reported that a survey of more than 100 retailers by state investigators showed that the recalled toys still were on sale in a handful of stores and that numerous other stores had failed to post recall notices.

In addition, the investigators turned up packages of the toys that at first glance appeared not to be included in the recall but on closer examination were found to have a second wooden toy train piece inside that, Madigan said, appeared to be part of the recall.

As a result, the attorney general’s office said the scope of the wooden train recall could be much larger than originally thought and that its investigators likely will conduct another statewide sweep to check whether those train sets are being pulled from store shelves.

On Tuesday, RC2 said in the statement, “We have determined that there is no need to recall packaged train sets that contain both wood and metal products, as we have successfully determined that none of these sets contain the 26 products subject to recall. If any parents are confused about these sets, they are welcome to return them for a replacement.”

The firm said in addition to replacing all recalled products returned by consumers and reimbursing them for return postage, “we are providing them with a bonus train car as a thank you for returning the recalled items.”

The lawsuit filed Tuesday is the seventh federal class-action case brought against RC2, according to a search of the federal electronic filing database. The suit also named as defendants HIT Entertainment, the London-based children’s entertainment company that licenses the Thomas & Friends railway toys; APAX Partners, the private-equity group that owns HIT; and Learning Curve Brands, Inc., the subsidiary of RC2 that markets the railway toys.

HIT Entertainment has said it notified the operators of “Day Out With Thomas” events, a traveling show where people can ride a life-size Thomas train, to discontinue selling the recalled toys. A woman from New Berlin, Wis., told the Tribune that three days after the recall order, she purchased one of the recalled items at one of those events in Green Bay, Wis., after an employee assured her that the item was safe.

After contacting RC2, the woman was informed that the toy she purchased was a recalled toy, according to a copy of the company’s e-mail obtained by the Tribune.

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A few days ago Kerry Ng at The Autism Blog wrote an article on how vitamin D deficiency is related to autism. The Telegraph was the first to report this article Telegraph in England where they have had the worst midsummer weather on record. But why does that matter?

Because sunlight gives us Vitamin D. Without Vitamin D our bodies can suffer from rickets, multiple sclerosis, diabetes, and possibly, autism.

Children from orphanages like Little Pickel are at a great risk for a vitamin D deficiency due to lack of sunlight as well as proper nutrients. Additionally, according to the Telegraph they are at a greater risk for Type 1 diabetes and MS.

However, the risk of MS, diabetes, and possibly autism, can be decreased by having birth mothers take vitamin D during pregnancy and by giving infants vitamin drops that contain vitamin D.

The Vitamin D Council tends to agree with the UK theory.

The theory that vitamin D deficiency, during pregnancy or childhood, causes autism is just a theory. However, the theory has a plausible mechanism of action, explains all the unexplained facts about autism, subsumes several other theories, implies simple prevention, and is easily disprovable—all components of a useful theory. A genetic lesion (abnormality) in some component of the vitamin D system—a lesion vitamin D’s unique pharmacology could overcome—would explain why monozygotic (identical) twins are highly affected while fraternal twins are not. Varying brain levels of activated vitamin D during later life would explain why some identical twins get severe disease while others are barely affected. Falling vitamin D levels over the last 20 years due to sun‑avoidance explain autism’s rapid increase in incidence during that same time. The very different effects estrogen and testosterone have on vitamin D metabolism may explain why boys are much more likely to get it than girls are. Lower vitamin D levels in blacks may explain their higher rates of autism. The vitamin D theory has tenable explanations for all the epidemiological features of autism.

What is interesting is that when the American Medical Association Council on Scientific Affairs told the American public to start avoiding the sun (specifically pregnant women and young children) they also did not warn us of the potential vitamin D deficiencies that would cause.
Currently, they still recommend the same daily units of vitamin intake. Dietary Reference Intakes: For Calcium, Phosphorus, Magnesium, Vitamin D, and Fluoride (Dietary Reference Series)

Why is vitamin D so important?
According to the Vitamin D Council it aids in normal brain development, stimulates brain cell growth, and maintain normal blood levels of calcium and phosphorus. It also helps to maintain strong bones, thus the connection to rickets.

Major Food Sources
Cod Liver Oil
Salmon, Mackerel, Tuna (although children are not advised to eat fish, especially salt water)
Fortified Milk
Margarine
Pudding prepared with fortified Milk
Ready to eat cereals fortified with 10% of the daily allowance
Eggs (vitamin D is in the egg yolk)
Liver
Swiss Cheese

When does a Deficiency Occur?
The Office of Dietary Supplements states that a deficiency can occur for 1 of four reasons.
# when usual intake is below recommended levels (Milk allergy, lactose intolerance, vegetarianism, and strict breast feeding without supplementation)
# when there is limited exposure to sunlight
# when the kidney cannot convert vitamin D to its active hormone form
# when someone cannot adequately absorb vitamin D from the digestive tract

In this case, my son had 3 strikes against him when we adopted him; he was not given the proper nutrition and had a lactose intolerance and no vitamins, he had limited sun exposure, and he had a stomach bacteria called H Pylori which damaged his intestinal lining and caused a “leaky gut”. When we brought him home from Russia at the age of 26 months he had a mild case of rickets (seen only in his protruding forehead), and was also very anemic.

Do children with rickets show signs of autism?
Personally, YES. Little Pickel, my son had mild rickets and he showed many signs of autism, albeit Institutional Autism, but only upon getting adequate nutrition. Before that he was quite calm and sedated. Once he started eating he was able to “come out of his shell”.

This is Mangan’s answer from Vitamin D Council:

If vitamin D deficiency caused autism, then children with vitamin D deficient rickets would be at greater risk for the disease. To the best of my knowledge, no studies have looked at the psychiatric profiles of children with vitamin D deficient rickets to look for evidence of autism. However, children with rickets are more likely to be hypotonic (flabby muscle tone), display decreased activity, and have developmental motor delays. Hypotonia is common in children with autism, as is decreased activity, and developmental motor delays are the rule

All that said, does Vitamin D link to Autism or is this just the new fad in theories?

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Rumor is President Bush will veto the new Mercury law that will ban the use of mercury in children’s flu vaccines. However, according to InfoWars, he pledged to support this move in 2004 when he ran for re-election.

What he is doing:
The White House stated on Tuesday that President Bush would veto the FY 2008 HHS-Labor-Education Appropriations Bill because of the cost and “objectionable provisions” such as a measure to ban the use of childhood flu vaccines that contain thimerosal, a mercury-based preservative, a press release from Autism advocacy group Safe Minds on the PRNewswire-USNewswire states.

Bush is calling for an amendment that would remove the children’s safety provision from the bill.

So, basically he is trying to save a few dollars instead of saving a few lives? (if you buy into the whole mercury theory, that is)

To read the article go to InfoWars.net

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by Mary Beth Langan and Sally Nantais, July 2006

From : Fragile, What?
1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6.Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson’s and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and Polymerase Chain Reaction (PCR) tests. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:

www.fragileX.org, the National Fragile X Foundation

www.FRAXA.org, Fraxa Research Foundation

www.conquerFragileX.org, Conquer Fragile X Foundation

** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html

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Don’t forget! National Fragile X Day is this coming Sunday, July 22!

Motorcycle ride organizers raise awareness of Fragile X Syndrome
By Elizabeth Raffaele

GRAY/NEW GLOUCESTER (July 18, 2007): Playing with a mini-motorcycle and munching on a slice of apple, 4-year-old Alex Gosselin seems like an ordinary child.

But Gosselin isn’t a typical child. The blond, blue-eyed boy was diagnosed at birth with Fragile X Syndrome.

Physically, he looks like any other kid. But he displays autism-like behavior, something his mother said people can have a hard time understanding.

“When you look at Alex, you don’t see anything wrong,” Gosselin said. “It can be frustrating when he has a behavioral outburst.”

According to Gosselin, few people know about Fragile X Syndrome even though it is the most common genetic cause of autism. Fragile X Syndrome is the most prevelent cause of mental retardation and July 22 is National Fragile X Awareness Day. According to The Fragile X Research Foundation, Fragile X affects 1 in 4,000 males and 1 in 6,000 females.

In order to raise awareness and money for Fragile X, Gosselin is organizing a motorcyle ride and silent auction for Saturday, Aug. 25. She has organized the ride since 2005.

The proceeds from the ride and the auction will go the National Fragile X Foundation and FRAXA Fragile X Research Foundation as well as for therapy scholarships for Maine children who are diagnosed with Fragile X.

Gosselin, who owns Maine Coast Cycle with her husband Eric in New Gloucester, said the auction will consist of such items including motorcycle gear, a fly fishing rod, restaurant gift certificates, among other items.

According to North Yarmouth resident Julie Wilson, who also has a child named Alec who was diagnosed with Fragile X, the point of the event is to also get early intervention for those children who are undiagnosed. Wilson is helping Gosselin organize the event.

“I’m pretty confident if I hadn’t received occupational therapy when he was young…then I think life would be harder for him today,” Wilson said.

“The important part is if parents, who have kids who are having difficulty, get the treatment and the services,” she said.

While children with Fragile X physically look much like other children, they exhibit symptoms such as delayed speech, autistic behaviors, reduced eye contact and seizures.

Alex Gosselin, for example, is mostly nonverbal. However, he uses more than 40 signs in order to communicate ideas to his parents.

For Gosselin and Wilson, the inability to communicate can present the most challenging aspect of caring for a child with Fragile X. Wilson recalls what it was like when her son, who has recently graduated high school, was Alex’s age.

“I remember what it was like when he was smaller with no communication…that was really tough until language comes,” Wilson said.

For Alex Gosselin, that time could be fast approaching as he was recently approved for a voice-output device that will help him communicate with his family.

There is a $25 donation for those who participate in the ride. Gosselin, who is unsure of the exact course, said it will be a Lakes Region ride beginning at Maine Coast Cycle. Ride registration begins at 8 a.m., the ride at 9 a.m., and the auction at 1 p.m. In order to donate items to the auction or volunteer with the event, individuals should call Maine Coast Cycle at 926-4211.

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Don’t forget to submit your post to the first Special Needs Carnival for Kids. Penelope at Brazen Careerist has already sent hers in and its a doozy!

Submit at Blog Carnival or at My Two Boys.
Final submission is July 30.

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