Autism Families With New Pregnancies Sought For Vitamin D Research

Associate Professor Emeritus of Psychiatry and Pediatrics (OHSU, Portland, Oregon) is seeking roughly 50-100 volunteer families to participate in a vitamin D study. The goal of the study is to find out whether giving Vitamin D to the pregnant mother, who already has had at least one previous child with autism, can prevent the recurrence of autism in the newborn sibling. Vitamin D will be provided free of charge. Baseline blood tests will be obtained and will be repeated in about 2 months. The blood tests will be paid for by the grant at no charge to the family. The study will include screening tests when the baby is 18 months of age and further evaluations at 3 years of age will be performed to determine if the child has developed autism or not.

Families may participate in the study from a distance. That is, to participate, families do not have to live in the Portland, Oregon, USA area. We have families who are participating from other countries. It would be helpful if they could read English or had someone who could interpret English for them.

Preliminary findings are that babies are delivering on time, the babies' weights are healthy (not premature), and so far, there are no complications. It is too early to say whether these children will develop autism or not, but the results so far are promising.

Source: Vitamin D Council

http://www.medicalnewstoday.com/articles/193181.php

Just one more reason to be careful when choosing alternative therapies.

FDA warns maker of product used as alternative autism treatment

OSR#1 is not a dietary supplement but a toxic, unapproved drug with serious potential side effects, FDA warns

June 23, 2010|By Trine Tsouderos, Tribune reporter
http://articles.chicagotribune.com/2010-06-23/health/ct-met-autism-chemical-20100623_1_boyd-haley-autism-recovery-movement-dietary-supplement/3

A product promoted to parents of children with autism is not a harmless dietary supplement, as claimed, but a toxic unapproved drug that lacks adequate warnings about potential side effects, including hair loss and abnormalities of the pancreas, the U.S. Food and Drug Administration has warned in a letter to its maker.

The FDA's June 17 letter to Boyd Haley, a retired Kentucky chemist and hero to the autism recovery movement, details five violations of the Federal Food, Drug and Cosmetic Act related to his product, OSR#1. Failing to correct such violations can result in fines, seizure of products and even criminal prosecution.

The Tribune in January reported that the compound, sold as OSR#1, had been developed to treat mining wastewater, and that it had not undergone rigorous testing to ensure it is safe and effective. The report was part of an investigation into unproven autism therapies offered by health providers who say they can reverse the disorder.

Haley did not reply to repeated requests for an interview Wednesday. An FDA spokeswoman said the agency has not received any communication from Haley, who has 15 working days from the date of the letter to respond.

Last year, Haley told the Tribune: "I am not breaking any law. … We are being very, very careful."

The Web site for Haley's company, Lexington, Ky.-based CTI Science, on Wednesday was still promoting OSR#1 as "a toxicity free, lipid soluble antioxidant dietary supplement," and a reporter was able to order 30 100-milligram capsules of OSR#1 for $60 through an online pharmacy.

In the interview last year, Haley called the product "a food" that is "totally without toxicity." Haley said the compound had been tested on rats, and a food safety study was conducted on 10 people. Asked to provide documentation of the research, he stopped communicating with the Tribune.

The FDA letter lists side effects recorded during Haley's animal studies: "soiling of the anogenital area, alopecia (hair loss) on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas" and a rapid increase in normal cells contained in the lymph nodes.

"It would be hard to imagine anything worse," said Ellen Silbergeld, an expert in environmental health who is studying mercury and autism at Johns Hopkins University's Bloomberg School of Public Health. "An industrial chemical known to be toxic — his own incomplete testing indicates it is toxic. It has no record of any therapeutic aspect of it, and it is being marketed for use in children."

OSR#1 has been promoted on autism Web sites including Age of Autism, where Managing Editor Kim Stagliano wrote of sprinkling the white powder on her three daughters' breakfast sandwiches and orange juice. "We've seen some nice 'Wows!' from OSR," she wrote.

In an e-mail, Stagliano wrote that she continues to support Haley, a regular speaker at autism recovery conferences. "Having met Dr. Haley at conferences, including Autism One in Chicago last month, I continue to trust his science," she wrote on Wednesday. "I'm sure CTI Science will address the letter appropriately."

Pharmacologist Dr. Arthur Grollman, director of the Laboratory for Chemical Biology at State University of New York at Stony Brook, said it is clear from the product's chemical structure that it is a "powerful chelator," a compound that binds to heavy metals such as mercury.

The FDA has approved several chelators as drugs to treat heavy-metal poisoning. Some doctors also use the drugs — which carry significant risks — to treat children with autism on the scientifically unfounded idea that their disorder is linked to toxic metals.

The chemical being sold as OSR#1 is part of a family of chelators originally developed for industrial purposes, according to a U.S. patent issued in 2003 and assigned to the University of Kentucky Research Foundation.

The magazine Medical Veritas in 2006 reported that Haley said he was interested in developing better chelators for people. "We've made compounds that ... work tremendously" in a test tube, he was quoted as saying. "However, we've got to show that they're not toxic. That costs a lot of money and it's very difficult to do, you have to have the right facilities. That's where we're hung up right now, the question is, 'How do we get somebody to do these studies?'"

In January 2008, Haley changed the name of his company from Chelator Technologies Inc. to CTI Science Inc., records show. Less than a month later, he notified the FDA he would be introducing the compound as a new dietary ingredient, a designation rejected by the FDA in its recent letter.

"Because OSR#1 does not bear or contain a dietary ingredient as defined (by the food and drug act), this product does not qualify as a dietary supplement," the letter states.

Instead, according to the letter, it is a new drug. Winning FDA approval requires proof of safety and efficacy through clinical trials, a process that can cost hundreds of millions of dollars and take many years.

"Anything might be a cure for anything else, but the odds are it will do nothing and it might very well be toxic," said Richard Mailman, a neuropharmacologist at Penn State University. "That is why drug discovery and development is so expensive."

Silbergeld said the product represents a clear example of endangerment of public health and that the FDA should stop CTI Science from selling it immediately. She drew a comparison to a city's drinking water system: If contamination is found, she said, "they turn off the pumps."

"They don't have to engage in a long discussion with you," Silbergeld said. "It would be hard to imagine a more clear example of immediate endangerment of public health. Turn off the pump."

Fun and Function! What a great company!

I just happened to stumble across a company that sells play equipment and therapy devices for children with special needs.  And if you've been following my blog at all, you know I haven't really endorsed any company... until today.  Their name is FUN AND FUNCTION.  They have a page on Facebook (see, spending time on Facebook CAN be beneficial!)  So of course I had to sign up for a free catalog to really see what these people are all about.

IT'S AMAZING!

I'm really impressed.  These toys and therapy devices are professional.  Prices are a little higher than your average daily toy, but I assume it has to do with quality.  This is the kind of stuff your OT would purchase to use one on one or in a classroom setting.  Sensory, gross and fine motor, oral therapy, nutrition, self help, perception and language.  Please, please, please check it out.  The catalog was FREE, my favorite price, and I can't tell you how excited I am to have this as a resource.

I prefered the catalog to the website, but you can find it here:
http://funandfunction.com/

Order the catalog here:
http://funandfunction.com/

Follow them on Facebook!
http://www.facebook.com/FunandFunctionFans?ref=ts


Update 6/23
I also just found this site.  Less special needs toys, but still some neat stuff!

http://www.kidlantis.com/

HR 1255 - What is it really about?

From The Arc of WA blog...
http://arcofwa.blogspot.com/2010/06/hr-1255-what-is-it-really-about.html


HR 1255 - What is it really about?

The Arc of Washington State recently posted an Action Alert at http://capwiz.com/arcwa/state/main/?state=WA where we encourage you to call and email your congressional leaders.

Here is the summary written by the Congressional Research Service for HR 1255:

Prohibits any entity that receives funds from the federal government from using them to file a class action lawsuit against an intermediate care facility for the mentally retarded on behalf of any facility resident unless the resident (or the resident's legal representative), after receiving notice of the proposed class action lawsuit, has the opportunity to elect not to have the action apply to the resident.

The National Disability Rights Network (NDRN) opposes this bill and is also encouraging people to contact congressional leaders and ask them to oppose it. The bill is the same one that was brought forward in 2007 (HR 3995) and it died in committee then.

On the surface, this bill would appear to be protecting the individual with a developmental disability. In reality, this bill would greatly limit the ability of protection and advocacy agencies to bring class action lawsuits regarding institutions for people with developmental disabilities. It would allow guardians and other representatives to “opt out” a resident from a class action.

The best interest of the individual with a developmental disability is not always served by the guardian, particularly when some attorneys make money by being the paid guardian for 20, 30 or more people living in institutions. It is less work for these paid guardians to keep their clients in an institution than to have to oversee services provided in the community.

The 2009 Facilities Closure report (one of many) commissioned by our legislature recommended that Washington close all but a few RHC beds by 2019 and convert Lakeland, Fircrest, and Yakima Valley into three small community support centers. Each center would have clinical expertise to support people with autism and their families. These three centers would also retain a small number of beds to honor the state’s commitment to allow people and their families to age-in-place.

The Olmstead Decision in 1999 affirmed the right of individuals with disabilities to live in their community and not be required to live in institutional settings. The 'integration mandate' of the Americans with Disabilities Act requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." It is a violation of an individual’s civil rights to institutionalize them because it is easier for the guardian. We must look at what is the least restrictive environment that allows individuals to participate in community activities, be employed and be provided the freedom and opportunities that every other Washingtonian enjoys.

Advocating for full community participation for all,
Diana Stadden

Wow...

Autistic Salutatorian Delivers High School Graduation Speech
Rhode Island High Schooler Leads Class Despite Speech Struggle

By BRADLEY BLACKBURN

Eric Duquette is the salutatorian of his high school, an honor student, a musician, and he has autism.

The 18-year-old Duquette, who couldn't say a word until age five, gave the commencement speech at his high school graduation ceremony Tuesday night in Smithfield, Rhode Island.

"My parents were told I would most likely end up in an institution," said Duquette. "I stand before you accepted into every institution of higher learning I applied to."



He stood at the podium wearing a green cap and gown and a big grin on his face. His speech, funny and touching, was met with enthusiastic applause from his peers.

Duquette graduated from Smithfield High School with the second-highest grade point average in a class of just under 200 students. He will attend Rhode Island College in the fall, with plans to study biology and eventually become a pharmacist.

"Tonight is all about reflection and looking forward to the journeys that lie ahead of us," he said.

It's been quite a journey for Eric. His success in high school came after years of work and slow progress. Diagnosed with autism when he was a young child, Duquette struggled with communication and language.

Mother's Dedication Gives Gift of Speech
His mother, Judith Duquette, began working with him early to break down his communication barrier with speech therapy. In addition to professional therapy, mother taught son using sign language and cards with pictures and symbols.

Despite his early struggles with speech, today he speaks both English and Spanish. He's a member of the Spanish National Honor Society and placed 93rd in the nation on the Spanish V exam.

"Daniel Webster wrote that 'if my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest,'" Duquette said at the podium. "For me, learning to communicate did mean regaining all the rest."

Listing the scholarships and college acceptances he's received, Duquette said that he hoped to inspire his fellow students.

"I tell you this so you do not allow yourself or others to be defined by your limitations but rather abilities. Never underestimate yourself," he said.


http://abcnews.go.com/WN/Broadcast/student-autism-class-salutatorian-delivers-high-school-graduation/story?id=10933858

Autism Safety

Did you know injuries are the number one cause for disability and death in children?

Not surprisingly, autistic children have a higher rates of injury than typically developing children.

Jack Scott and Toby Honsberger of Florida Atlantic University are doing a study on this very topic.  Please take a moment and fill out their survey.  Together, we can help keep our kiddo's safe.

www.surveymonkey.com/autismsafety



Here are some other safety links from the National Autism Association
http://www.nationalautismassociation.org/safetytoolkit.php

Autism Speaks Autism Safety Project
http://www.autismsafetyproject.org

ASA Safe & Sound Safety Initiative
http://www.autism-society.org

Autism Risk Management
http://www.autismriskmanagement.com/

The Autism & Law Enforcement Education Coalition
http://snarc.org/alec.htm

Pennsylvania Premise Alert
http://www.papremisealert.com The Premise Alert Program gives families the opportunity to provide critical medical information to first responders before a crisis. Families can have a difficult time relating necessary information in times of extreme stress. This program also gives first responders advanced knowledge of special needs individuals in their community allowing them to respond with greater accuracy which increases positive outcomes.

The Law Enforcement Awareness Network
http://leanonus.org
It is the mission of L.E.A.N. On Us to provide first responders with information and resources that will allow them to better serve individuals within their communities affected by hidden disabilities and mental illness.

Child Safety Products
http://www.mypreciouskid.com
http://www.selectautismmerchandise.com
http://www.tattooswithapurpose.com

Tips for First Responders & CaregiversNational Center for Missing and Exploited Children:
http://missingkids.com
 | 24-hour Hotline - 1-800-THE-LOST (1-800-843-5678)

Service Dogs
http://autismservicedogsofamerica.com
http://www.4pawsforability.org/autismdogs.htm
http://blessingsunleashed.org

Ten Tips On How to Be a Friend to an Autistic Person

By Sky News Wire

People with autism may have a difficult time making friends or being one, for the fact that most of them have limited social skills, which makes it hard for them to relate to others or be a friend. In addition, many have not been taught social and communication skills or how to relate to them. Because of these difficulties that autistic people may experience, the question is, how can you be a friend to them?

* I believe it is imperative that you must be a friend to yourself first. This is accomplished by understanding yourself and nurturing yourself as you grow.

* To be a friend to an autistic person, you want to become strength to him or her. This is done by encouraging the autistic individual, not by putting them down with criticism, which will cause discouragement and low self-esteem.

* Many individuals with autism have difficult behaviors, because of their various levels of the disorder which creates numerous challenges. This may vary according to their age and environment. Be patient with the person with the disorder of autism and let him or her know you do care about them and want to be their friend. Be on common ground with them.

* It is important for you as parent(s), caregiver(s) to become sensitive to the disorder of autism. Practice companionship. Sometimes it is wise not to talk at times but be silent, listen to what the person is communicating or trying to say. I have learned, there are times when the wrong words or not using the right words can destroy friendships that are in its embryo stage.

* To be a friend to an autistic person, is to try to overlook his or her faults and understand that he or she is overcoming their weaknesses, as you are overcoming yours. Be patient with the person and let him or her know you do care about them and want to be their friend. Be on common ground with them.

* I have learned, not to attempt to change or find fault with people who have the disorder of autism, but make them comfortable with your presence, give them time to get to know you. Be tolerant of these individuals and have an understanding with a forgiving heart.

* Autistic individuals are people who want and need friends just as people who do not have the disorder. They want to belong, feel accepted and loved. They may have difficulties socializing or communicating, but you can discover how to be friends with them and continue to grow with them.

* Another way to be a friend to a person who has autism, find out what their likes and dislikes are. If the person enjoys lunch, take him or her to a restaurant that will be enjoyable. If sports is an enjoyment, take the person to a baseball game or watch it with them in a park or on television. Be creative, find out what the person wants to do, what he or she likes, and enjoy it with them. You can also make new suggestions and create new ideas.

* Send an autistic person a card in the mail with encouraging words on it, or a letter to say you are thinking about the person and you care. This can be done once a week or whenever there is a special occasion or just for fun.

* Bring the individual some treats, home made cookies, or candy. Many autistic children will appreciate balloons, so will adults as a gesture to be friends with the person. Use your imagination, and you will discover that making a friend with a person who has autism will be rewarding.

Source: http://www.skynewswire.com/modules/news/article.php?storyid=18041

What Causes Autism?

The question of the century, right?  It appears researchers are gaining ground as of late in their search to pinpoint similarities among kiddos with autism.  Every few days we're seeing new updates in the ongoing puzzle and most points to two factors - genetics and an outside influence.

There is some agreement that autistic children have a gene variant, or underlying medical condition like mitochondrial dysfunction that causes them to be more susceptible to autism.  In this case, a child who has this variant could in theory be fragile to environmental exposures that would cause a breakdown neurologically.  Environmental exposures that would normally be safe to the average population.

So what is this outside influence?

Many subscribe to adjuvents in vaccines, chemicals in household products, radiation, viruses, allergies, and a list of other invaders that have spurred anti vaccine campaigns, increased sales in green cleaning products, and increased the client load of many naturopathic physicians.

New studies have suggested a proximity relationship between children with autism, which could provide clues towards a common contaminate, but with these studies, there are other contributing factors that arise.  High socioeconomic status can skew data as you find those clusters of children typically have better access to healthcare and therefore earlier diagnosis. (HERE)

Is only one the answer?  I don't think so.

I personally believe that just like cancer, autism can have many types and causes.

ScienceDaily (June 10,2010) - The world’s larget DNA scan for familial autism has uncovered new genetic changes in autistic children that are often not present in their parents.  Identified in less than 1 percent of the population, these rare variants occur nearly 20 percent more in autistic children.

Published in the June 9 online edition of Nature, the findings emphasize the need for larger study samples to illuminate the diverse genetic causes of the brain disorder.

UCLA researchers from the David Geffen School of Medicine and Semel Institute for Neuroscience and Human Behavior were among the lead investigators of the three-year study by the Autism Genome Project, an international consortium of scientists from more than 60 institutions in 12 countries.

"We know that 10 million gene variants consistently exist in every individual's genome," explained Rita Cantor, UCLA professor of human genetics. "We used DNA chips to collect and analyze data on 1 million of these variations to shed light on how autism develops."

Using blood samples from 996 elementary school-age children diagnosed on the autism spectrum from the United States, Canada, and Europe, the scientific teams combed the children's DNA for rare deletions and duplications. In particular, they hunted for changes in the genetic information that a child inherits from each parent. The families consisted of parents with one autistic child.

"We discovered two striking things. First, the rare variants interfered nearly 20 percent more in the genes of autistic children than in the healthy children," said Dr. Daniel Geschwind, Gordon and Virginia MacDonald Distinguished Chair in Human Genetics and UCLA professor of neurology and psychiatry. "Second, we found a number of disruptions that are new, or de novo. The autistic child is the first in their family to carry that variant. The parents do not have it.

"This suggests that tiny genetic errors may occur during formation of the parents' eggs and sperm, and these variations are copied during creation of their child's DNA," added Geschwind, who is also director of the UCLA Center for Autism Research and Treatment. "The finding parallels what takes place in chromosomal disorders like Down's syndrome."

The study confirms earlier findings in smaller samples that some children carry private genetic mutations that are unique to them, contributing to their susceptibility to autism.

"We found many more disrupted genes in the autistic children than in the control group," said Dr. Stanley Nelson, UCLA professor of human genetics and psychiatry. "But here's where it gets tricky -- every child showed a different disturbance in a different gene. When we looked at the gene's function, however, certain categories of genes emerged that were more likely to be influenced by the mutation.

"Three of the disrupted genes, for example, participate in cellular communication," Nelson explained. "They all cluster at the synapse, the site where brain cells talk to each other. One of these genes has previously been tied to autism and intellectual disabilities."

The researchers' next step will be to uncover patterns by identifying groups of disrupted genes that work together in the body to establish key functions or biological processes. The results may reveal clues to where genes go awry and increase autism risk, offering hope for common treatments.

In the meantime, families affected by autism can help advance research efforts by participating in future genetic studies.

"This study's larger sample size enabled us to pinpoint rare variations that we could not have detected in a smaller group," emphasized Nelson. "Yet these findings explain only 3.3 percent of the genetic origins of autism. In order to identify all of autism's genetic causes, we need tens of thousands of families to volunteer their DNA samples for sequencing."

Many of the study's samples were provided by families who donated blood to the Los Angeles-based Autism Genetic Resource Exchange (AGRE), a gene bank created and funded by Cure Autism Now, (since renamed Autism Speaks), and a grant from the National Institute of Mental Health to the three UCLA authors.

The consortium's research was funded by Autism Speaks (USA), the Hilibrand Foundation (USA), Health Research Board (Ireland), The Medical Research Council (UK) and the Genome Canada/Ontario Genomics Institute. Additional support for individual groups was provided by the U.S. National Institutes of Health and equivalent federal agencies in Canada, France, Italy, United Kingdom, Germany, Portugal and Sweden.

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by University of California - Los Angeles


University of California - Los Angeles (2010, June 10). World's largest DNA scan reveals rare variants that disrupt gene activity in autistic children. ScienceDaily. Retrieved June 11, 2010, from http://www.sciencedaily.com/releases/2010/06/100609131637.htm

School moves away from "coding" kids.

Forgive me please for the large number of articles I've shared as of late.  This one was just too awesome not to share.  It really speaks to integrating children with autism and other disabilities into normal atmospheres and the benefits that are seen in doing so.

School moves away from 'coding' kids
Classes integrate all types of students
By Karen Kleiss, Edmonton Journal  June 8, 2010

EDMONTON - Tonya Roberts can't take her children to the park, because one of her two autistic sons might run away.

Toilet training was a nightmare. Seven-year-old Gabriel would lash out when someone got too close. At five, Layne refused to put his clothes on and still refuses to wear socks.

For a long time, Roberts felt isolated and hopeless. "I couldn't see a way forward," she says.
Then she found Crawford Plains School.

Tucked in the city's deep south near 42nd Street and 12th Avenue, it is one of 16 city public schools testing an innovative new program that mixes kids who have special needs into regular classrooms.
The two-year pilot project is part of an attempt to move away from "coding" students according to disability, then allotting funds based on the number of children with special needs.

Instead, a new report called Setting the Direction encourages the province to move toward an inclusive education system that puts kids of all kinds in one classroom. Alberta Education spokeswoman Zoe Cooper said the province will make an announcement Friday about its response to the framework outlined in Setting the Direction.

Roberts moved to the southernmost corner of the city from the north end so her boys could attend Crawford Plains. She gets choked up when she talks about what the school has meant to her family.
"The principal, Jeanne Carter, reached out her hand to me," she said. "She recognized the needs. Talking to her helped me look at the bigger picture."

Carter knows how Roberts feels; more than 20 years ago she adopted a child with fetal alcohol spectrum disorder and waged her own battles to get a quality education for her daughter.

Four years ago, she and assistant principal Colleen Sayer started the process of integrating kids at the K-6 elementary school. Two years later, when the province started the pilot program, Crawford Plains was a natural fit.

"We like to think of our school as a good example of the motto that 'it takes a village to raise a child,' " Sayer says.

At Crawford Plains, one-quarter of the kids have mild to moderate disabilities.

The disabilities range from cognitive and behavioural challenges to learning disabilities and physical challenges. A class with 17 children may have six special-needs kids.

In the past, educational assistants sometimes formed a "cocoon" around special-needs children, inadvertently isolating them from other kids and sometimes creating dependency, Carter says.
At Crawford Plains, educational assistants move from child to child and classroom to classroom, helping special needs kids develop independence and build confidence.

The children seem to barely notice the difference. A boy with autism sits beside one of the smartest girls in the class, because they get along. Children at varying levels buddy up for reading and gym class. The autistic children have a special recess time and play outside with their Grade 6 buddies, who teach them to play on the equipment and just be kids.

"The skills that I've seen them develop, the empathy, the understanding, it's wonderful," Carter says. The inclusion and integration means disabilities begin to disappear, she says.
"Everyone just sees that everyone is on their own path."

The motto in one classroom is "everyone makes mistakes."

The results are often astonishing, and even heartwarming. Take, for example, the boy who has trouble remembering what order to get dressed for recess: snow pants, then boots, then coat and finally, mittens. Other children help him, every day.

"The kids are great about reminding him to get his shoes on, get this out and so on," Carter says.
Or take the autistic boy who loves dinosaurs and gets to colour in his dinosaur colouring book for a set period of time after he finishes a task. The other children remind him when his time is up, and help him focus on schoolwork again.

Ten-year-old Lynzee Kenyon enjoys helping out special-needs kids in her class. "It is fun to see how they learn," she says. "It feels great, because you know you're doing a good deed for someone who doesn't have the same mind as you."

For Tonya Roberts, life is still a struggle. But thanks to the teachers and assistants at Crawford Plains, her son Gabriel will stay dressed and can stay calm enough to sit in a regular classroom much of the time. He has learned to tell people to leave him alone when he feels he is going to lash out. Both boys are toilet trained.

"Now we feel a sense of stability," Roberts says.

"The kids have a sense of accomplishment. We have a sense of being part of a community, and I'm not isolated at home. Geez, I'm going to start bawling here."

Read more:  http://www.edmontonjournal.com/health/School+moves+away+from+coding+kids/3125771/story.html#ixzz0qIliXwDO

UW Study - You Might Be Needed!

Do you have a child with autism and a younger sibling?

If so, the University of Washington may want to track your younger child's development at NO CHARGE TO YOU.

Your child must...

• be between 5 and 13 months old
• have an older sibling with autism who is under 17 years of age

The UW will...

• ask you to come to the UW Autism Center for 5 to 9 visits
• evaluate your child's social and communication skills
• provide diagnostic evaluations at 24 and 36 months
• pay you for your time and expense

For more information, please call Erin Olsen, Study Coordinator, 800-994-9701
or email: uwautism@uw.edu

Gene Variants Lead to Autism and Mental Retardation: Inner Structure of Nerve Synapses Defective in Patients

ScienceDaily (May 26, 2010) — Researchers working with Professor Gudrun Rappold, Director of the Department of Molecular Human Genetics at Heidelberg University Hospital, have discovered previously unknown mutations in autistic and mentally impaired patients in what is known as the SHANK2 gene, a gene that is partially responsible for linking nerve cells.

However, a single gene mutation is not always enough to trigger the illness. In some cases, a certain threshold of mutation must be exceeded. The researchers conclude from their results that a correct inner structure of the nerve cell synapses is necessary to enable the normal development of language, social competence, and cognitive capacity. Essential for the success of the project were the studies by the Heidelberg research team with the doctoral student Simone Berkel and collaboration with a Canadian research team headed by Steve Scherer.

The study has already been published online in the leading scientific journal Nature Genetics.

Autism is a congenital perception and information-processing disorder of the brain that is often associated with low intelligence, but also with above-average intelligence. The disease is characterized by limited social communication and stereotypical or ritualized behavior. Men are affected much more frequently than women. Autism and mental retardation can occur together but also independently of one another and are determined to a great extent by hereditary factors. Some of the responsible genes have already been identified but the precise genetic mechanisms have not yet been explained.

Genetic makeup of hundreds of patients analyzed

Professor Rappold and her team focused their studies on the SHANK2 gene, which encodes a structural protein at the nerve cell synapses. It is responsible for the mesh structure of the basic substance in the postsynapse. Only when the postsynapse is properly structured can nerve impulses be correctly transmitted. The researchers analyzed the genetic material of a total of 396 patients with autism and 184 patients with mental retardation. They found different mutations in their SHANK2 genes in the area of individual base pairs, but also variants in the number of gene copies. The mutations led to varying degrees of symptoms. None of the observed gene variants occurred in healthy control persons. "Apparently an intact postsynaptic structure is especially important for the development of cognitive functions, language, and social competence," explained Professor Rappold.

Identical mutations as the cause of different diseases

Some of the genetic mutations identified were new occurrences of mutations that were not inherited from the parents, but some of the mutations were also found in one parent. Since there are also healthy carriers of gene variants, we must assume that a certain threshold of gene mutations must be exceeded for the disease to appear. "Moreover, the same mutation can be present in an autistic patient with normal intelligence and in a mentally impaired patient," said Professor Rappold. There is some overlap in the clinical symptoms of mental retardation and autism, which can now be explained by a common genetic cause.

http://www.sciencedaily.com/releases/2010/05/100525103933.htm

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by University Hospital Heidelberg.

A Fascinating Woman.

Temple Grandin.

What an incredible opportunity to look through the eyes of an autistic person.  A high functioning autistic, this woman is a doctor of animal science, bestselling author, and a professor at Colorado State University.  I encourage you all to know more about her as it isn't often you get such an educated perspective of autistic life.  As I study her, it has truly helped me to better understand the situation my son is in, and therefore helps me serve him better.

Check our video's section for a great presentation by her.


By Julian Guthrie | SFGate

Temple Grandin has written best-selling books and revolutionized livestock slaughterhouses. She is a professor of animal science and an activist, and a recent movie about her life starred Claire Danes. And, Grandin is autistic.

Grandin began talking in the 1980s about what it meant to live with autism, opening the door to a closed world. For the first time, it was possible to glimpse what it was like to be extremely sound or light sensitive, to feed on repetitive behavior but thrive under new experiences devoid of surprises.

Grandin, 62, was in the Bay Area last week, dividing her time as her life work is segmented – between animal welfare and autism. Grandin, who estimates that more than half of the cattle in the United States and Canada are now handled in equipment she designed, visited a Marin County dairy. The next day, she spoke at a luncheon in Novato for Matrix, a nonprofit providing support to families with children on the autism spectrum.

In an interview before the luncheon, Grandin offered advice to parents, talked about her work with animals, and spoke of how her own developmental challenges became assets.

Q: What is your advice for parents of children on the autism spectrum?

A: You have to get kids out and expose them to things, but do this without any surprises, so they know what to expect. You have to find skilled mentors to teach them things. For me, it was an aunt, and it was my science teacher. You need to find the things they’re interested in and good at and expand on this. If your child likes to draw trains, broaden it to the station. Where does the train go? Keep broadening it.

Q: What do you say to educators?

A: Sometimes it’s something as simple as changing the lightbulb in a classroom. With kids on the spectrum, there are a lot of sensory issues. Some of these kids can’t tolerate 60-cycle florescent lights. It can make the whole room look like a discotheque. Sound is another big one. I was frightened of a lot of things, of balloons because they might pop. People on the spectrum don’t think the same way you do. In my life, people who made a difference were those who didn’t see labels, who believed in building on what was there. These were people who didn’t try to drag me into their world, but came into mine instead.

Q: How far has the treatment of autism come from when you were diagnosed in the 1950s?

A: I went to the TED conference recently and there were (people with) Asperger’s (syndrome) all over that conference! I go to Silicon Valley and they are all over Silicon Valley. A little bit of the autism trait can give you an advantage. But back in the 1950s, they thought autism was psychological. They were trying to find my psychological problems. And when I was diagnosed, mothers were blamed for causing autism. There was no autism support. They’d put autistic kids in institutions. I had severe autism. But my mom wouldn’t accept that. I was put in speech therapy. My mother was always pushing me to do stuff.

Q: What needs to be done now in terms of autism research?

A: One area of study that still needs to be done is the kind of autism where kids have speech and they lose it. Some parents say it’s happened right after vaccines. That group needs to be studied separately from others.

Q: Are there medications that have helped you?

A: I’m a believer in biochemistry. But I tell people to try only one thing at a time to see if it works. And if you do give a powerful drug to a kid, it better have a big wow factor. I’ve been on antidepressants for years, and it worked to stop my anxiety and didn’t limit creativity. Some of the best work I’ve done, in fact, is after I started taking the antidepressants.

Q: What advice do you have for parents of toddlers who worry that something is developmentally wrong?

A: If you have a 2-year-old who is non-verbal, don’t wait until you get a diagnosis at 4. The child needs one-on-one teaching with an effective teacher now. This can be a grandmother or a teacher or someone from the community. Grandmothers are especially great. There are a lot of grannies around. Go to your church for help.

Q: How did your interest in livestock welfare start?

A: On my aunt’s ranch when I was 15. I got to thinking about how the animals are feeling. When I got into it in the early ’70s, there wasn’t even the term “animal welfare.” I feel very strongly that we need to give beef cattle a really good life. When they go to slaughter, it needs to be painless.

Q: How was it when you went to your first slaughterhouse?

A: It wasn’t as bad as I thought. I had to answer the question, “Do cattle know they’re going to get slaughtered?” I went to plants and watched. I went to feed yards and watched as they were lined up for vaccination. They behaved the same way in slaughter plants as when they headed into vaccinations. Then I started watching and saying, “What kind of things are they afraid of?” I found they were afraid of shadows, reflections, certain colors, of a piece of chain hanging down. If you took out these things they were afraid of, they would just walk right in.

Q: Do you like the HBO film about your life?

A: It did a fantastic job showing how my mind thinks visually. Everything I think is in pictures. The movie will be out on DVD Aug. 17.

Q: You once said, “If I could ever snap my fingers and be non-autistic I would not do so.”

A: That’s true. I don’t like the way most people think. It’s imprecise. I find that when parents ask me questions, they ask very imprecise questions. They say, “My kid has behavioral problems at school.” Well, I have to say, “What kind of problems? Is he hitting? Is he rude? Does he rock in class?” I need to narrow questions to specifics. I am very pragmatic and intellectual, not emotional. I do get great satisfaction when a parent says, “I read your book, and it really helped me.”

Q: Does your autism define you?

A: I don’t define myself as autistic first. I don’t want to be a professional autistic. I think it’s important to have a real job.

Source:
http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2010/04/25/DD0B1D27S2.DTL

The Current Rotavirus Issue.

Many parents of children with autism are skeptical about vaccine safety.  The circumstantial evidence seems to be in large supply, mostly from parents of kiddos with regressive autism.  You child is fine, and then sometime after their 12 month or 18 month appointments, they start to go downhill... fast.  I'm not sold on either side of the argument yet, as there has been just as much if not more to prove the safety of vaccines as there is to disprove it.  And I could break off here into a whole discussion surrounding undiagnosed Mitochondrial Dysfunction and how vaccines and/or any kind of viral infection play a role in the development of autism... but that's for another day.

What I'd like to focus on is the recent recall of the rotavirus vaccine that largely went under the media radar last month.  And this really has nothing to do with autism, but if you have a child, you might want to take a look at this.  We've been made recently aware of pig virus DNA contaminates in both GlaxoSmithKline's Rotarix (PCV1) and Merck's RotaTeq (PCV1 and PCV2) vaccines.  Just the idea that there is a contaminate that unknowingly entered into the vaccine is enough to make me squirm, but did you know the one that contaminated the RotaTeq vaccine has parts of a pig virus (PCV2) that have been known to severely harm pigs and mice?  And why is it the latter of the two was completely missed in CNN's report of the recall last month?  Maybe because the FDA didn't recall RotaTeq.

http://www.fda.gov/BiologicsBloodVaccines/Vaccines/ApprovedProducts/ucm212140.htm
http://www.cnn.com/2010/HEALTH/03/22/rotavirus.vaccine/index.html
http://www.addl.purdue.edu/newsletters/2005/fall/pcv2.htm
http://www.biomedcentral.com/1746-6148/1/7

And they've now decided to continue to allow the administration of these vaccines.  (See the first link above).  But why now is GlaxoSmithKline choosing to fix it?  I mean, if it's safe, then what's the problem?  "FDA and the manufacturers will continue to investigate the findings of PCV in rotavirus vaccines, and will evaluate information from ongoing testing by FDA and the manufacturers.  As noted by the firm during the May 7, 2010, VRBPAC meeting, GSK plans to rederive its vaccine, in consultation with FDA.  Merck is in the early stages of its investigation, and has not yet determined next steps in this regard."


Nice, isn't it?  They are going to continue to evaluate the ongoing testing, and yet they're still giving the vaccines their blessing.

And notice it's not just a matter of quality control, GSK is going to "rederive" it.  That says to me that it really isn't a contaminate, but a normal occuring phenomenon in the components of the vaccine.

And truly, PCV1 has no known major effects to pigs, so I would think GSK would be right in not being too concerned, but Merck with it's PCV1 and 2?

My skin is crawling right now.

Mostly because the lack of quality control that seems to be associated with several childhood medications as of late.  They could have found saline in there that wasn't supposed to be and I'd still squirm, just because they lost control of their quality process.

I'm not trying to be a wierdo conspiracy alarmist.  You'll find the FDA has this information available for all to see.  But we must remember, so far there isn't any documented evidence that either vaccine has caused any harm since it's been on the market, and it has, I am certain, saved many lives.  But I believe the public still needs to be informed.

For more on this including a large section of sources cited, please check out this blog.  It is from the president of the National Vaccine Information Center.  And it's worth reading.
http://vaccineawakening.blogspot.com/2010/06/vaccine-contamination-threat-to-human.html

And what they're doing about it.
http://www.marketwatch.com/story/the-national-vaccine-information-center-nvic-joins-with-holistic-health-pioneer-dr-joseph-mercola-in-calling-for-merck-to-voluntarily-recall-its-live-rotavirus-vaccine-rotateq-2010-06-01?reflink=MW_news_stmp