________________________________________________________________
Thurday,
April 15,
2010
Vol. 14 No. 36
NEWS
New Research Theorizes Link Between Autism And Toxic Chemicals
RESOURCES
Dealing with the “Special Needs” of Divorce
'Time Out' for Houston Parents of Autistic Children
Couple Launches Web Site To Help Disabled Find Discounts
RESEARCH
The ABC’s of Autism - New Book Explores the Genetic Factors in Autism
PUBLIC HEALTH
Against the Element
PEOPLE
Gruesome Testimony In Odgren Murder Trial
Parents of Autistic Kids Face Daily Fear
LETTERS
On the New ARI Supplement to the SAR
NEWS
New Research Theorizes Link Between Autism And Toxic Chemicals
By Zulima Palacio, Voice of America. is.gd/buBmf
Dr. Martha Herbert is a pediatric neurologist at Massachusetts General Hospital. She's directing a large research study on toxic chemicals in the environment and their impact on brain development, including autism. "The genes load the gun," she said. "But the environment pulls the trigger."
For years, scientists have believed that autism was genetically based.
But Dr. Herbert believes environmental factors can either trigger or worsen the illness.
She says finding those elements early in life and changing them could determine the severity of the disease. "We have a system in the body called the detoxification system, detoxification is another variant. In detoxification you get rid of things that you don't want either your body's own waste products or things that get in which you don't want to have around," she said. "It can be air pollution, it can be plastics in the food, it can be pesticides that are in so many of our products."
Dr. Herbert's research involves babies, school age children and adults, with and without autism.
She is trying to find out how the brain becomes autistic and at what point.
She has been following Kenzie and Cooper, brothers who don't have autism. Like others in her study, she tests them regularly for toxic chemicals, brain imaging changes and developmental disorders.
"My personal commitment is to test and if it is true then to show that the influence of chemicals on the brain is not just during development but in your whole life," Dr. Herbert explained.
Dr. Herbert is not alone in looking at the environment.
Dr. Larry Silver is a Professor of Psychiatry at Georgetown University Medical Center in Washington. He has been researching learning disabilities for more than 40 years. He says he knows enough to be concerned about toxic chemicals in the environment. "We have increasing concern that the environmental toxins may be contributing to these disabilities and also to the increase in these disabilities," he said.
In the U.S. nearly 3 million people have been diagnosed with autism. While in 1994 one in every 1000 children was diagnosed with the disease, today there is one for every 110.
Jeff Sell at the Autism Society says numbers around the world are similar. "Genetics alone cannot explain that type of increase in prevalence," he said. Two of Sell's four children are autistic, even though there's no family history. "My boys both have high mercury levels, lead, pcvs," he added.
For many years, advocates for autism patients believed the disease is caused by vaccinations, especially the measles vaccine. But several studies found no link between vaccines and autism.
Now Sell and the Autism Society are pressing to update legislation on toxic chemicals. He says there are more than 82,000 chemicals being released into the environment, but there's good information on only 200.
He says we are damaging not only the human population, but the world we live in.
Story was narrated by Mil Arcega
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RESOURCES
Dealing with the “Special Needs” of Divorce
New Book Showcases the Need-to-Knows of Surviving Divorce with a Special Needs Child
From the publisher.
| “There are conflicting studies on how high the divorce rates are in families with a special needs or disabled child, but whether the divorce rate is 50, 75, |  |
In her informative new book, Divorce and the Special Needs Child: A Guide for Parents [July 2010, Jessica Kingsley Publishers, 288 pages, paperback, 978-1-84905-825-4, $24.95], Price provides useful information and insights through comprehensive explanations of everything parents and caregivers need to know when experiencing divorce with a special needs or disabled child. To make sure that a child’s unique needs are properly handled, Price has created a groundbreaking new text to function as a guidebook to help individuals navigate such a difficult time.
Divorce and the Special Needs Child guides parents through the initial hurdles of choosing the right lawyer for their case, and explains exactly how to work with them to achieve the best possible outcome for all concerned. From agreeing upon child custody arrangements that meet the particular needs of the child, to making provision for child support payments, gathering together the documentation needed to prove a case, and dealing with financial issues such as debts and property distribution, no aspect of divorce is left uncovered. A set of checklists is included to ensure that parents consider everything they need to, and the book concludes with a useful list of further resources.
Going through a divorce is always tough, but when a child with special needs is involved it can be especially challenging. Divorce and the Special Needs Child takes a clear and comprehensive look at every aspect of the legal divorce process, and addresses all of the legal issues that divorcing parents of children with special needs face. “Think of the divorce court process as an assembly line in a factory,” writes Price. “Think of the assembly line becoming jammed because someone threw a wrench in the machinery.” This is what can happen when a divorce case involving a child with disability hits the current court system.
“Keep in mind that this is a new area of the law,” writes Price, “and you will have to work hard to get results.” However, though the task may seem daunting, Price is optimistic. “Just because something is difficult does not mean you should give up or not even try. You have grown and become stronger through your experiences as the parent of a disabled or special needs child. You can do this."
Margaret “Pegi” Price is a family lawyer who specializes in divorces involving special needs children.
• • •
'Time Out' for Houston Parents
of Autistic Children
By Damali Keith myfoxhouston.com is.gd/buzsf
Divorce has been called a common side effect of autism. 80 percent of couples with autistic children get divorced, according to the National Autism Association. One Houston-area couple is trying to change that.
Chances are that adults are aware of putting children in 'time out,' but one couple wants parents to serve their own version of 'time out.' This is a good 'time out' though. It gives parents of children with autism a much needed, all-expense paid 'date night' out without the children.
"It's a free dinner, transportation and child care, if wanted, from trained professionals" says Scott Jackson.
"That, I think, is the biggest thing. You don't know who can handle the load that you take on everyday. These are things parents do 24-7 and they're concerned that someone can't do it for two hours" says Ashley Jackson.
Scott and Ashley Jackson's five-year-old son Tyler was diagnosed with autism in 2007. Jackson, then an offensive lineman for the Houston Texans, started the Tackling Autism Foundation.
The Jacksons also hope to tackle the high divorce rate among couples with special needs children. Their foundation is giving away free date nights, once a month, to parents who have a child with autism.
+ Read more; is.gd/buzsf
• • •
Couple Launches Web Site To Help Disabled Find Discounts
By Stephanie Cary, dailybreeze.com is.gd/buyIM
|
The beautiful wings of a butterfly
suggest freedom. Freedom to go wherever you want. Freedom to see whatever you desire. That's why Mara Squar and her husband, David, chose the butterfly as a symbol for their new Web site, DisabledDiscounts.com, which is intended to give people with disabilities that sense of freedom. Mara Squar was diagnosed with multiple sclerosis, a disease of the central nervous system, nearly 30 years ago. Unable to work, she thought of herself as a financial burden on her family. "When you're disabled and you can't |
 David Squar recently started the Web site to help caregivers and the disableded find money-saving bargains. He has become a caregiver for his wife, Mara, who has multiple sclerosis. (Scott Varley/Staff Photographer) |
But while Mara and her husband were filling out paperwork for their new home in Sherman Oaks, they stumbled across information about a tax break available to disabled homebuyers.
If this kind of savings existed unbeknownst to David - who owned an escrow company - they wondered, what other discounts might be available for the disabled?
About two months ago, the couple launched DisabledDis counts.com as a link to these types of discounts, benefits and services for people with disabilities, broken down by state and county.
The site has more than two dozen categories in which discounts can be found, including sports and recreation, health care, taxes, pet care, entertainment, legal services, education and utilities.
"In the beginning, we thought it would be really great if you could save $100 a month," David Squar said. "Depending on what you use, it can be thousands of dollars a month. We are saving between $1,600 and $1,900."
David calls these savings "pull-back money" because it comes from everyday expenses.
Hundreds of discounts are available but not all states offer the same savings. And often the opportunities differ between counties within the same state.
Not all states are included on the Web site - though California is - but David anticipates that 35 to 38 states will be available by the end of April.
Emanuel Alvarez, a program specialist for the Los Angeles Caregiver Resource Center at USC, said DisabledDiscounts.com seems well developed for the most part, and that its mission is very clear.
Alvarez said he has received minimal feedback on the site from clients, though he has heard complaints about the annual $25 per state fee that users are charged.
So who exactly is eligible for these discounts?
The federal Americans with Disabilities Act defines a disabled person as someone who has a physical or mental impairment that makes him or her unable to do one of life's daily functions. This can range from driving a car to tying a shoe to reading.
Those who receive federal Supplemental Security Income are considered disabled. But even those who do not receive SSI could be considered disabled and eligible for the benefits.
"For the electric company, the gas company, those types of companies, they send you a letter, your doctor fills in what you have, signs it and that's the end of that," David Squar said. "It's a very non-problem."
Along with informing users about discounts for the disabled, David said, he hopes the site brings awareness to businesses that do not offer such benefits and services.
"(The disabled community) is the largest untapped market in the United States," he said. "It has 55 million plus, there is no market as big. If you are a store, you could market to 55 million people by giving discounts that you are already giving in some sort of way anyway and you are going to pick up a lot of business."
Through the Squars' pull-back money, Mara has found a sense of validation, she said, because she is once again pitching in.
+ Read more: is.gd/buyIM
|
The
Autism Community Supports the Schafer Autism Report |
RESEARCH
The ABC’s of Autism - New Book Explores the Genetic Factors in Autism
From the publisher.
Getting a diagnosis of autistic spectrum disorder (ASD) can be a major hurdle and a major achievement for families. However, the diagnosis is only the first step in figuring out how an ASD will impact an individual’s future health and wellbeing. Even though a wide range of genetic conditions have been reported in association with a diagnosis of ASD, not enough materials exist that highlight the roles genetic conditions play in determining an effective treatment plan. Knowledge about all these factors may be important, or even critical to providing the best help for someone with an ASD.
In his informative new book, A-Z of Genetic Factors in Autism: A Handbook for Parents and Carers [July 2010, Jessica Kingsley Publishers, 496 pages, paperback, 978-1-84310-679-1, $29.95], Kenneth Aitken creates a comprehensive guide of useful and insightful information on the myriad of genetic factors most commonly associated with autism spectrum disorders. Easily accessible to both parents and caregivers, A-Z of Genetic Factors in Autism provides a complete overview of the genetic disorders most often linked with autism.
Aitken addresses disorders linked to growth differences, cardiovascular issues, neurodevelopmental problems, immune dysfunction, gastrointestinal disturbances and epilepsy. He lists these conditions alphabetically along with information about how common they are, their causes, signs, and symptoms, and for many, appropriate methods of treatment and management. Information on support groups and sources of further information are also included to help parents obtain any additional support they need, and keep up to date with new developments in research and practice.
The concept of a single condition known as ‘autism’ is quickly becoming outdated, and is now understood to be an umbrella term for a variety of predominantly genetic conditions. Aitken outlines how this can be confusing for parents of children who have been diagnosed as having an ‘autism spectrum disorder’ and provides an easy-to-read solution to help demystify the term.
“It is important to understand that because something has a genetic basis this does not necessarily mean that it is unchangeable,” writes Aitken. “Understanding why is the first step to successful intervention. Increasing knowledge of the differences within autism is often as important as recognizing the commonalities among those with the diagnosis."
Kenneth Aitken is a practicing clinical psychologist and an independent autism consultant based in the UK.
• • •
PUBLIC HEALTH
Against the Element
Grisly research in the Arctic is calling into question what we think we know about mercury’s toxic effects.
By Elie Dolgin. the-scientist.com, is.gd/buqy2
© AP Photo / The Canadian Press / Jonathan Hayward
From the backseat of a black sports utility vehicle, wildlife toxicology grad student Anke Krey peers out at the snow-lined arctic road ahead. A teenager on a skidoo pulls onto the shoulder and narrowly weaves ahead of a pick-up truck; two huskies run across the road as a Mack truck comes barreling down the other way. It’s a week before the winter solstice, and the temperature outside is roughly –35°C with the wind chill. Krey quietly slips on her seatbelt.
“You know you’re a foreigner when you put on a seatbelt,” laughs the unbuckled driver Michael Kwan, a local environmental toxicologist from the Nunavik Research Centre in Kuujjuaq, Northern Quebec. Erring on the side of caution over local practices, Krey, visiting from the University of Northern British Columbia in Prince George, keeps her seatbelt on.
Kwan drives down Kuujjuaq’s main thoroughfare, past the town hall, bank, post office, general store, two churches, and the half-frozen Koksoak River, to a pair of temporary trailers. With the research center in the middle of a $7 million upgrade, these propped-up, makeshift laboratories serve as the provisional epicenter for studying contaminants in Nunavik—a landmass about the size of California that comprises the northern third of Quebec.
Stepping inside one of the trailers, Kwan opens a large freezer full of bread loaf–shaped lumps wrapped in black garbage bags. He unties one bag to reveal the snarling canine teeth of a dead, skinned polar bear head. Kwan looks up, grins slyly and says: “This is the kind of opportunity that a researcher from the south can only dream of."
Krey came to this remote Inuit village—where the boreal forest meets the arctic tundra, some 1,500 kilometers north of Montreal—in December with a singular goal: to dissect polar bear brains and look for neurochemical changes associated with low levels of exposure to the toxic metal mercury.
However, it’s not just polar bears that interest Krey and her advisor, environmental health researcher Laurie Chan. Over the past few years, Chan’s lab has measured mercury contamination in many arctic mammals—including, seals, caribou, mink, otters, muskrats, beluga whales (see page 20) and humans—in an effort to better understand how these various species deal with chronic exposure to mercury.
“It’s all different ways to ask the same question,” says Chan: “Can we have a better handle on our human activities and its consequences on the health of the ecosystem?"
The story of mercury contamination traces back to the 19th century, when the toxin was widely used in the felt industry, and hat makers often developed neuropsychotic symptoms—hence the phrase “mad as a hatter.” Researchers started to notice that food was a potential source of mercury poisoning after scores of people died or fell ill from contaminated fish in Japan in the 1960s and from tainted grain in Iraq in the 1970s. In these cases, however, people were exposed to extreme doses of mercury pollution from industrial burning of fossil fuels, and most scientists agreed that normal background levels of mercury were safe, for the most part.
Even so, no governing body could agree on how much mercury was too much.
+ Read more: is.gd/buqy2
• • •
PEOPLE
Gruesome Testimony In Odgren Murder Trial
By Richard Weir, is.gd/buzSv
Moments after a trench coat-clad (autistic) John Odgren savagely plunged a butcher knife into a classmate’s heart, the 16-year-old killer cried out, “Oh my God. What did I just do?” - according to a prosecution witness who overheard the heinous attack in the school bathroom.
Odgren, now 19 and on trial for the Jan. 19, 2007, murder of 15-year-old James Alenson, buried his head in his hands and sobbed yesterday as the witness, Stephen Weiss, told jurors of the horrified victim’s dying words.
“ ‘What are you doing? Stop that. Ow. Ow. You’re hurting me,’ ” Alenson said, according to Weiss, then a student at Lincoln-Sudbury Regional High School, who was in a stall in the boys bathroom where the bloody slaughter unfolded.
Seconds earlier, Weiss testified in Middlesex Superior Court in Woburn that he had heard the bathroom door open and then quickly open again, followed shortly by the sounds of “physical contact” and some scuffling.
Then came the wounded teen’s cries, followed by “more contact,” and later the sounds of Alenson stumbling toward the exit, trailing blood on the floor just beyond the stall, Weiss recalled.
+ Read more; is.gd/buzSv
• • •
Parents of Autistic Kids Face Daily Fear
By Peter Linton-Smith, FOX 13 News Pasco County, is.gd/buA7c
|
Janine Hanson's worst fears as a
parent of an autistic child were realized twice this week after two
autistic kids wandered away from their homes and, luckily, were found
safely. Hanson's front door looks like something you would find in a New York City apartment |
 |
"We have all the doors locked constantly, all the windows locked constantly," said Hanson. "She knows no danger. She doesn't know to be afraid on her own out there."
In a mall parking lot early Wednesday, Hillsborough County deputies found a 16-year-old autistic boy who had wandered away from his Odessa home.
"We learned that he had left in a vehicle which, of course, made things a lot more scary for us because he's autistic, he doesn't have a driver's license," said Sgt. Jeff Massaro. "That can be dangerous not only for him but the public."
The day before, a Central Florida girl with an autism-related disorder was found alive in an alligator-infested swamp after being missing for several days.
"Seeing these two stories back-to-back this week have completely unnerved me because I know eventually it's going to happen," said Hanson. "Eventually she's going to be able to slip away from us."
Keeping Anna safe in her own home is one thing, but going out in public, especially in crowded areas, can become a major challenge for the family.
10-year-old Anna has a service dog, who makes many trips with her. Thus far, the Hansons have been able to protect Anna, and hope they will be able to continue to protect her from herself as she grows up.
"We learn every day," Hanson added, "[that] we have to come up with something new with each problem that arises."
The Odessa teenager was enrolled in the Project Lifesaver program, which outfits special needs people with a wristband tracking device, but he somehow removed it when he wandered away.
The Hillsborough County Sheriff's Office says more people need to enroll in the program. There is a $100 fee up front, and then a $30 monitoring cost per month.
The family of Nadia Bloom, the girl who wandered away in Central Florida, say they have already purchased a GPS bracelet for her.
• • •
LETTERS
On the New ARI Supplement to the SAR
I sure hope this new supplement is going to be informational and not just advertising for various ARI/DAN interests; I hope it's truly an information outreach effort and not primarily a business deal. Even in this announcement of the new SAR supplement from ARI there is an advertisement for an ARI/DAN conference.
Second, in the included "ARI Statement Regarding Lawsuits Filed Against Drs. Usman and Rossignol", I want to comment regarding the following line from the statement: "The [ARI/DAN] approach is not in itself a source of controversy, since many treatment interventions are commonly prescribed by traditional health professionals." This is an untrue statement in the sense that the DAN approach is definitely a source of controversy, and, it is accurate to say, a source of a lot of controversy (this goes for the treatment interventions prescribed by traditional health professionals as well). There is plenty of evidence of this controversy available to anyone who wishes to review it; the internet is a great way to access much of this evidence. Also, I myself can supply the evidence to anyone wishing to see it.
-Dave Gaines, Behavior Analyst
Stephen Edelson of the ARI responds:
Behaviorist Dave Gaines raised three issues in his response to the Autism Research Institute’s (ARI) first supplement in the Schafer Autism Report (SAR).
One issue raised by Gaines was my stating that the ARI/DAN! approach is not controversial, and Gaines disagreed and wrote “the Internet is a great way to access much of this evidence.” When I worked closely with Dr. Ivar Lovaas during my early autism years, he would always stress that one should not form an opinion based on the opinions of others. One truly needs to go to the source of the information. I do not, and do not think many others, consider the Internet as a truly reliable source of information. Dave, I would suggest that you consider watching one of our conferences, from beginning to end, on the Internet (no charge, www.ARIWebcast.com) and/or reading Drs. Baker and Pangborn’s book titled “Autism: Effective Biomedical Treatments.” I will be happy to visit with you in Sacramento next month and lend you a copy. Or if you treat me for coffee, I’ll give you a free copy.
In any case, there are hundreds of scientific articles documenting medical problems, especially gastrointestinal (GI) and immune, in many individuals on the autism spectrum. You can view these references at: www.AutismScienceCitations.com and/or read the review paper on GI problems that was recently published in Pediatrics (January, 2010).
The second issue raised by Gaines was my stating “… since many treatment interventions are commonly prescribed by traditional health care professionals.” Gaines writes that this is not true. Again, he is relying too much on opinions and misinformation on the Internet. Many, not all, of the treatments consistent with the ARI/DAN! approach ARE prescribed by traditional medical doctors and nutritionists; but I should clarify, these traditional interventions are given to non-autistic individuals – maybe this is part of the confusion. Some of these treatments include detoxification, such as chelation, when the person tests toxic in heavy metals, such as lead and mercury; antifungals when a person has extremely high levels of yeast in his/her body; nutritional supplements when a person is low in critical nutrients such as vitamins A and D, and zinc; probiotics and enzymes when a person has bowel movement problems; and much more.
Again, the scientific literature clearly documents medical problems for individuals on the autism spectrum; and these problems cannot be addressed by simply prescribing Risperidol, Ritalin, and Prozac. The underlying plea to physicians is: please learn about the common medical problems associated with autism and then treat these individuals the same way as you would treat those individuals without autism.
The ARI/DAN! approach or philosophy is to alert physicians of the medical problems commonly associated with autism, and to inform them of ways to treat these problems.
Over a year before his death, Dr. Ted Carr approach the Autism Research Institute after he realized the importance of understanding and treating the underlying medical problems associated with autism. He attended one of our Defeat Autism Now! conferences as well as our think tank. Dr. Carr was troubled at the amount of misunderstanding and misinformation about the biomedical approach by many professionals in the field. In fact, he had planned to work closely with ARI over the next 10 years to integrate the biomedical and behavioral fields. He even co-wrote a paper on this issue with Dr. Martha Herbert (published in the ASA’s Advocate newsletter), and a paper with me (www.autism.com, under ‘What’s New’ section).
In honor of the late Dr. Ted Carr, I propose a joint meeting or symposium with respected individuals in the behavioral field and in the biomedical field.
And finally, Gaines raises the possibility that Lenny Schafer or the Schafer Autism Report and I may have made a business deal regarding ARI’s weekly supplement in SAR. As stated in the first supplement, Lenny is a long time supporter of ARI. I can assure you and others that there is no financial arrangement between us, unless you count my taking Lenny out for coffee and toast at Denny’s earlier this year.
- Steve Edelson, Ph.D., Director, Autism Research Institute
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