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Tuesday, April 30, 2013

Athletes 4 Autism Sports for Kids on the Spectrum Sunday, May 5 in Weston, MA

From The Rivers School

This Sunday, May 5, at the Rivers School in Weston, MA, there will be a great opportunity for your children to participate in a fun afternoon of sports.

Athletes 4 Autism will be organizing soccer and basketball games for kids on the spectrum. This is a great opportunity for kids on the autism spectrum to participate in games and events with college and high school athletes who have been specially trained to play sports with spectrum kids.

Kids of all levels and abilities are encouraged to attend. No prior athletic experience is necessary!

When:    1:00 - 3:00pm Sunday, May 5, 2013

Where:  The Rivers School
                   333 Winter Street, Weston, MA

Parking is available; refreshments and snacks will be provided. Please join in the fun!

If you have any questions about this event, please contact Jake Goldberg at
j.goldberg@rivers.org, or if you want additional information about Athletes 4 Autism, please visit their website.

What Every Parent Must Know About Attention Deficit

From Parenting Magazine

By Susan Ince
April 26, 2013

As she emptied her son's preschool cubby, Mary Robertson wept. She felt that she must be a terrible mother -- why else would 5-year-old Anthony have been kicked out of school for throwing blocks while the other students raptly enjoyed story time?

After his expulsion, learning experts diagnosed Anthony with attention deficit hyperactivity disorder (ADHD), a condition thought to affect at least one kid in every classroom. His mother, meanwhile, worked out an individualized educational plan (IEP) for him so he could continue in a regular classroom, and became an active member of Children With Attention Deficit Hyperactivity Disorder (CHADD), a national support organization.

Knowing that these kinds of problems tend to run in families, the Lexington, KY, mother feared a similar ordeal when her second child was born. Instead, daughter Samantha was so laid-back that she never even received a time-out.

Surprisingly, Samantha's transition to school was also tough. Although she sat quietly, Samantha couldn't focus well enough to learn or even to play with the other kids. "There I was, on the national board of CHADD, and I completely missed that my daughter also had attention issues!" exclaims Robertson.

If even this savvy mom was caught off guard, how can less informed parents know when their youngster needs help? Indeed, more and more experts are saying that the way kids with attention troubles have been identified has done American families a disservice.

They're adamant that half of all kids with these difficulties are not being diagnosed, and those like Samantha -- who lack focus but don't exhibit other behavior that attracts notice -- are the most likely to slip through the cracks. 

Often confusing is the clinical diagnosis for her problem: ADHD - Predominantly Inattentive Type. In other words, she has a hyperactivity disorder without the hyperactivity.

The latest thinking is that lumping the two kinds of kids -- the fidgety ones and the unfocused ones -- together under the same diagnosis is actually preventing children like Samantha from getting the help they need.

"The problem is that the disorders sound like cousins, but the research indicates they are completely distinct and unrelated problems," says Richard Milich, Ph.D., professor of psychology at the University of Kentucky, Lexington, and a prominent researcher on ADHD

"(An inattention issue) may not be a behavioral but a learning or developmental disorder. We don't know where it fits -- but it's not, as previously believed, with ADHD."

It's a theory that's grabbing attention. Russell A. Barkley, Ph.D., an ADHD specialist at the University of Massachusetts Medical School at Worcester, has even proposed a new name: Focused Attention Disorder.

Still, even as researchers dig deeper, parents and teachers often fail to recognize the condition. Here's what you need to know.

Spotting the Struggle

Richie Whitman's difficulties began in the third grade. When reading, he couldn't focus on long passages. He was easily distracted, his backpack looked like a trash can, and he often forgot to hand in his homework.



"Inattentive kids are in their seats, but they're in another world. They have to go over material three, four, five times to answer questions," says Clare B. Jones, Ph.D., a diagnostic specialist. According to Jones, these youngsters are extremely forgetful, to the point that they can't remember to feed the dog even though it's a daily chore, or will raise their hands but forget the answer when the teacher calls on them. And, significantly, they look like daydreamers.

Other kids may call them couch potatoes or airheads. "Some common symptoms in these children -- being sluggish, lethargic, or spacey -- aren't even listed in the official diagnostic manual," says Caryn L. Carlson, Ph.D., associate professor of psychology at the University of Texas at Austin. In the past, inattentive kids were often targeted as lazy and unmotivated. But most need a cure, not criticism.

"It's essential that these children's problem be diagnosed as a true impairment -- not a lack of motivation -- so they can be helped," says Rosemary Tannock, Ph.D., senior scientist with the Research Institute of the Hospital for Sick Children in Toronto. That's one reason these kids have been going unnoticed: Even caring teachers often fail to see that it's a matter of "I can't" rather than "I won't."

And attention troubles are even less likely to be perceived in girls, in part because such problems are assumed to be a guy thing. "What gets a boy tested often gets a girl corrected: 'Sit up, try harder,'" says Jones.

Growing up on Long Island, Rose Nicolosi's* daughter Marielle* was a sweet, albeit shy, girl. But when Marielle stopped at her locker between classes, she'd lose track of time and end up needing a late pass; her grades were disappointing despite painful amounts of effort. As often happens, her attention deficit wasn't discovered until later, when Marielle was in middle school.

"My daughter has tremendous self-esteem problems because of this disorder," says Nicolosi. "Just having a diagnosis has been a help."

Being blamed for behavior like Marielle's -- and riding a downward spiral of negative self-worth -- is one of the most devastating effects of undiagnosed attention issues. Tammy Amoroso, a mother in Phoenix, learned that she had the disorder at the same time as her 8-year-old daughter, Ashley.

Amoroso looks back on her school years with regret. "The other kids laughed at my mistakes," she says. Her insecurities were so overwhelming that, when she finished high school, she turned down an acceptance to design school. Today, she's getting treatment alongside her child.

Identifying the Condition

This summer, psychologists will have a new diagnostic tool. The Brown Attention-Deficit Disorder Scales for Children uncover clues to inattention and enable specialists to interpret tests that measure IQ, memory, and ability to concentrate.

In addition, discovering that a kid has attention deficit could mean other issues are present. "If you think a lack of focus is your child's only problem, chances are two out of three that you're wrong," says Peter Jensen, M.D., director of the Center for the Advancement of Children's Mental Health in New York.

These kids are likely to have a reading, writing, or math disability or an anxiety disorder; they also have an increased likelihood of developing a major depression before adulthood.

"Don't hesitate to get the evaluations you need for a complete picture," advises Joanne O'Brien,* a mom in Hawaii. In the second grade, her daughter, Lauren,* would have done anything to avoid beginning her class work. Trouble getting started is a key indicator of the condition. But Lauren had an inability to focus plus some specific learning disabilities. In these cases, kids need more than remedial work to catch up. Plans were made (and are often updated) for changes in Lauren's regular class; she also gets special education and tutoring.

Zeroing in on How to Help

For years, Ritalin and ADHD have almost always been talked about in the same breath. But contrary to what you may think, medication shouldn't be the first line of treatment for the unfocused kids; experts believe that customized education and lifestyle changes should be.

Though parents of hyperactive children often describe medication as a miracle cure--"It turned my Mr. Hyde back into Dr. Jekyll," according to one mom--the effects can be quite subtle on youngsters whose main symptom is a tendency to zone out, and lower doses often work best.

Take the experience of two young brothers in Washington, DC. Damien Flynn* is a bright boy with ADHD whose fidgeting and complete inability to follow directions got him booted out of three preschools; on medication, he displays markedly fewer behavior problems.

But when the same drug was prescribed for his brother, Carlton,* who has attention deficit without the hyperactivity, changes were less apparent. After his dosage was raised, Carlton seemed to be in more of a dream world than before. He continues to take a low dose, says his father, because it does improve his concentration a little.

So if Ritalin isn't the magic bullet, what is the latest thinking on how to treat unfocused kids?

Help with learning. "It's not just pills, it's skills," says Jones. If a child hasn't been paying attention, chances are that educational gaps need to be filled. After Richie Whitman's first year of combined medication and tutoring, he received the most-improved-student award. "When they do better, don't say, 'I see that pill is really helping you.' Say, 'I can see that you're really putting in the effort,'" Jones says.

Some children may need simple measures such as a front-row seat and a teacher who double-checks that they turn in homework. Others need an adapted curriculum, a different teacher, or a new school.

Change parenting strategies. Recognize that forgetfulness is a sign of a disability and not willful misbehavior. Giving age-appropriate chores is reasonable, but don't expect your child to act without a reminder. "I would point out an unmade bed and then -- instead of giving Lauren time to take that in -- tell her to pick up the toys on the floor. That wasn't helping," recalls O'Brien. Now she gives Lauren instructions one task at a time.

Reorganize systems for chores and homework. Your child may need a distraction-free zone and lots of encouragement. To teach her daughter to use the school's agenda book to track assignments, she offered an incentive: Any week the teacher marked all OKs in the journal, Marielle got an ice cream cone or bowling outing. "It worked--but the ultimate reward for her was fixing the problem," says Nicolosi.

Get HER counseling. Attention deficit can negatively impact a child's self-esteem; connect her with a psychologist or family counselor.

Nurture your kid's social life. Unfocused children may have trouble listening to friends or finding activities that don't bore them. "That's typical of inattentive kids," says Jones, who calls them unhappy wanderers. In their houses, she finds dozens of abandoned hobbies.

"Help them find an interest, and then promote the heck out of it," advises Kathleen G. Nadeau, Ph.D., director of Chesapeake Psychological Services in Silver Spring, MD. To minimize frustration and expense, look for things that don't require lots of practice, she suggests. For example, singing in the choir might be better than taking up the violin. A church group or scouting can provide a ready-made social life for a child who is lonesome.

As experts uncover new findings, insights, and important tools, the payoff makes it all worthwhile. Says the recently diagnosed Amoroso, "We know so much more than when I was a kid. I feel that my daughter, with treatment, can accomplish anything."

Study Ties Autism Risk to Creases in Placenta

From The New York Times - Health

By Pam Belluck
April 25, 2013

After most pregnancies, the placenta is thrown out, having done its job of nourishing and supporting the developing baby.

Dr. Harvey J. Kliman, a research scientist at the Yale School of Medicine, said he became fascinated with placentas and noticed that inclusions often occurred with births involving problematic outcomes, usually genetic disorders.

But a new study raises the possibility that analyzing the placenta after birth may provide clues to a child’s risk for developing autism.

The study, which analyzed placentas from 217 births, found that in families at high genetic risk for having an autistic child, placentas were significantly more likely to have abnormal folds and creases.

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Health Guide: Autism

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“It’s quite stark,” said Dr. Cheryl K. Walker, an obstetrician-gynecologist at the Mind Institute at the University of California, Davis, and a co-author of the study, published in the journal Biological Psychiatry. “Placentas from babies at risk for autism, clearly there’s something quite different about them.”

Researchers will not know until at least next year how many of the children, who are between 2 and 5, whose placentas were studied will be found to have autism. Experts said, however, that if researchers find that children with autism had more placental folds, called trophoblast inclusions, visible after birth, the condition could become an early indicator or biomarker for babies at high risk for the disorder.

“It would be really exciting to have a real biomarker and especially one that you can get at birth,” said Dr. Tara Wenger, a researcher at the Center for Autism Research at Children’s Hospital of Philadelphia, who was not involved in the study.

The research potentially marks a new frontier, not only for autism, but also for the significance of the placenta, long considered an after-birth afterthought. Now, only 10 percent to 15 percent of placentas are analyzed, usually after pregnancy complications or a newborn’s death.

Dr. Harvey J. Kliman, a research scientist at the Yale School of Medicine and lead author of the study, said the placenta had typically been given such little respect in the medical community that wanting to study it was considered equivalent to someone in the Navy wanting to scrub ships’ toilets with a toothbrush. But he became fascinated with placentas and noticed that inclusions often occurred with births involving problematic outcomes, usually genetic disorders.

He also noticed that “the more trophoblast inclusions you have, the more severe the abnormality.” In 2006, Dr. Kliman and colleagues published research involving 13 children with autism, finding that their placentas were three times as likely to have inclusions. The new study began when Dr. Kliman, looking for more placentas, contacted the Mind Institute, which is conducting an extensive study, called Marbles, examining potential causes of autism.

“This person came out of the woodwork and said, ‘I want to study trophoblastic inclusions,’ ” Dr. Walker recalled. “Now I’m fairly intelligent and have been an obstetrician for years and I had never heard of them.”

Dr. Walker said she concluded that while “this sounds like a very smart person with a very intriguing hypothesis, I don’t know him and I don’t know how much I trust him.” So she sent him Milky Way bar-size sections of 217 placentas and let him think they all came from babies considered at high risk for autism because an older sibling had the disorder.

Only after Dr. Kliman had counted each placenta’s inclusions did she tell him that only 117 placentas came from at-risk babies; the other 100 came from babies with low autism risk.

She reasoned that if Dr. Kliman found that “they all show a lot of inclusions, then maybe he’s a bit overzealous” in trying to link inclusions to autism. But the results, she said, were “astonishing.”

More than two-thirds of the low-risk placentas had no inclusions, and none had more than two. But 77 high-risk placentas had inclusions, 48 of them had two or more, including 16 with between 5 and 15 inclusions.

Dr. Walker said that typically between 2 percent and 7 percent of at-risk babies develop autism, and 20 percent to 25 percent have either autism or another developmental delay. She said she is seeing some autism and non-autism diagnoses among the 117 at-risk children in the study, but does not yet know how those cases match with placental inclusions.

Dr. Jonathan L. Hecht, associate professor of pathology at Harvard Medical School, said the study was intriguing and “probably true if it finds an association between these trophoblast inclusions and autism.” But he said that inclusions were the placenta’s way of responding to many kinds of stress, so they might turn out not to be specific enough to predict autism.

Dr. Kliman calls inclusions a “check-engine light, a marker of: something’s wrong, but I don’t know what it is.”

That’s how Chris Mann Sullivan sees it, too. Dr. Sullivan, a behavioral analyst in Morrisville, N.C., was not in the study, but sent her placenta to Dr. Kliman after her daughter Dania, now 3, was born. He found five inclusions. Dr. Sullivan began intensive one-on-one therapy with Dania, who has not been given a diagnosis of autism, but has some relatively mild difficulties.

“What would have happened if I did absolutely nothing, I’m not sure,” Dr. Sullivan said. “I think it’s a great way for parents to say, ‘O.K., we have some risk factors; we’re not going to ignore it.’”

About Pam Belluck

Pam Belluck is a health and science writer for The New York Times. She writes about many different subjects, often concerning complex or controversial topics, including fetal surgery, hospital delirium, paying patients to take medication, the donation of H.I.V.-infected organs, the science of musical expression and how the morning-after pill really works.

Her interests range quite literally from head to toe — from the “not tonight dear” signal sent by chemicals in women’s tears to the discovery of the world’s oldest leather shoe (size 7, right foot, preserved for 5,500 years under layers of sheep dung).

Her article about experiments scientists conduct using their own children as subjects was selected for The Best American Science Writing 2010.

Monday, April 29, 2013

What "I Love Lucy" Can Teach Us about Executive Function

From Soul Cries Parent

By Theresa Regan
March 9, 2013

As a neuropsychologist, I am often asked to explain executive function to patients, families, physicians and other staff.

Executive functioning is the most complex cognitive domain, and the one that is the most sensitive to decline or dysfunction. It is also very difficult to explain and includes many abilities such as multi-tasking, complex attention, speed, attention to detail and mental organization. It also includes what we call sequencing. 

Sequencing in the physical domain includes things like putting one foot in front of the other in a pattern that produces normal walking movements. In the domain of thinking skills, sequencing involves being able to take in multiple sources of information in sequence, sort out the information, know what information to pay attention to and what to ignore, and to be able to use the information to produce a behavior in the correct sequence.

In English please! Of course. Imagine a conveyor belt sending items toward you at a certain speed. If your executive function is working well, you can see and attend to each item and use it appropriately. However, if your mental sequencing is impaired, you will have trouble attending and responding to the items appropriately.

Remember this I Love Lucy episode?



If there is executive dysfunction, an individual may have trouble keeping up with information that comes at them, sequencing what to do with the information, and producing a useful outcome.

So for example, if you are talking to someone with executive dysfunction, and they have sequencing trouble, they may miss large chunks or details of what you are saying. If this individual is older in age, you might wonder if they have memory problems ("I already told you that?") or if in school, you might say ("Pay attention. Why aren't you focusing").

Another example is driving. If an individual is driving, visual information comes at them at great speed. They have to sequence all this incoming information and quickly figure out if "all is well" or if they need to adjust what they are doing with the car.

If they need to adjust, they need to sequence a response (e.g., first I need to take my foot of the gas, then I need to put my foot on the breaks, and I also need to see if I can turn into another lane, etc). The incoming information is sequenced, and the outgoing response is sequenced.

Some people who develop executive dysfunction may say "things that used to be automatic, now feel like I have to think about each little step."

Executive dysfunction is common after traumatic brain injury, is the main difficulty in attention deficit disorder, and is often a part of subcortical dementias (where the center of the brain is impacted like in Parkinson's Disease, small strokes, Multiple Sclerosis), and autistic spectrum disorders.

Approaches to helping someone with sequencing problems may include:

1. Providing information in smaller chunks and repeating the information over time. Individuals with executive function problems probably won't forget much of the information, but they may need repetition to store the information and may need cues to "get it out."

2. Executive function deficits may become severe enough to create safety problems while driving. A driving check-up or simulation exam may be helpful in these cases.
 
3. Break down tasks into smaller bits. The person with executive dysfunction may be able to do small parts of a task independently, even though they can't independently sequence through the whole task. They may only need verbal cues to keep moving on through the task (e.g, ok, now you finished this part, now move onto this next part).
 
4. A significant dysfunction in the executive domain may mean that someone will benefit from cooking assistance and supervision with medications. Cooking and sorting through medications each involves sequencing and there may be significant safety concerns if mistakes are made.

Parents Applaud Autism Study Recommendations

From Boston.com

By Calvin Hennick
April 24, 2013

When Michael Borr’s son, who is now 23 years old, was diagnosed with autism in the early 1990s, the prevalence of the developmental disorder was around 1 in 10,000 children, he says. Now it’s 1 in 88.

“I used to say the tsunami’s coming,” said Borr, chairman of Waltham-based Advocates for Autism of Massachusetts. “The tsunami’s not coming. It’s here.”

Borr and other advocates of increased support services say they’re hopeful that recommendations contained in a report released last month by the state Autism Commission will lead to improvements in how services are offered to people living with the disorder.

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Download a copy of the MA Autism Commission report HERE.

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In its report, the state commission, created in 2010, outlines dozens of recommendations that touch on housing, schooling, insurance, and employment, among other areas.

State Senator Richard Ross, a Wrentham Republican who is on the Autism Commission, cautioned that funding will be an issue in attempting to implement the recommendations.

“A lot of the other commissioners are a little more rosy-eyed,” he said. “You can’t do things without money.”

The causes of autism — and of the increase in prevalence — are not fully understood, although Borr said better diagnostics are likely responsible for part of the rising number of children diagnosed on the autism spectrum.

For Borr, two of the most important recommendations center on data collection and eligibility for services.

Currently, autistic adults with IQs above 70 are ineligible for help from the state Department of Developmental Services. The report’s authors recommend basing eligibility on functional limitations rather than on IQ, an idea Borr supports.

Borr, who lives in Sharon, said many people who are autistic face issues that don’t show up on IQ tests but still require assistance.

“They have social skills where they can’t interact within the community. They can’t hold a job. There’s a whole host of issues,” he said. “The spectrum is just that. You put 100 kids in a room, no two are going to be alike.”

Another recommendation calls for tracking data on the state’s autism population. Using the national prevalence number, the report’s authors made a rough estimate that 75,000 people in the state have autism spectrum disorders, but there’s no firm count.

For Jill Gichuhi, a Quincy resident with an 11-year-old son living at a residential school because of his autism, some of the report’s most important recommendations concern expanding existing services.

For example, families with children under 9 years old who are eligible for MassHealth coverage can receive money to help with things like having respite care provided by people trained to work with children who have developmental disorders. The report recommends making those funds available to families with older children as well.

Because her son is older than 9, Gichuhi said, she has to pay for such services on her own if she needs to leave him at home.

“Sometimes you luck out and you get someone who won’t make you pay an arm and a leg,” she said. “But a lot of times it’s difficult, because there are behavior issues and safety issues. You don’t want your neighborhood teenager.”

Gichuhi also praised the report’s recommendation to expand a program aimed at helping to keep kids in their homes, rather than placing them in residential schools. She said it would cost less for her son to be given services at home than to live at his residential school, but she can’t get those in-home services funded.

“It’s very frustrating for my family,” she said.

Lisa Bishop, a Lynn resident who has a 4-year-old son with autism, identified what she said was another common-sense, cost-saving recommendation in the report: getting MassHealth to pay for tablet computing devices, which can help children on the autism spectrum communicate. Her son, who has trouble speaking, points at pictures on an iPad to make his needs known, but her family had to pay for the device themselves instead of getting MassHealth to cover it.

“They cover very awkward, heavy, $3,000 devices, but they will not cover an iPad,” Bishop said. “An iPad is more socially acceptable, cheaper, and it also has other uses.”

Bishop said “there’s no reason” the recommendation can’t be implemented, but she’s unsure of the fate of measures that would require large amounts of additional funding.

“The state has no money right now,” she said, “so I don’t know what’s going to happen.”

“I’m cautiously excited,” said Gichuhi. “I hope it’s not, ‘For two years we’ll fund this, and then we’ll stop.’ ”

“I think the recommendations they came up with are a tremendous start, but it’s only a beginning,” Borr said. “They can make all the recommendations they want, but we need to turn those recommendations into a result.”

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Calvin Hennick can be reached at hennick.calvin@gmail.com.

Sunday, April 28, 2013

Working Memory Training Can Improve Emotional Regulation and Behavioral Health

From The Los Angeles Times via Sharp Brains

April 3, 2013

Mas­ter­ing emo­tions by sharp­en­ing mem­ory? It just might work! (Los Ange­les Times)

“Emo­tional reg­u­la­tion — the abil­ity to take neg­a­tive feel­ings and rec­og­nize, accept and chan­nel them prop­erly — is an Achilles’ heel for many peo­ple, but espe­cially for those with anxiety-related dis­orders, eat­ing dis­or­ders and some per­son­al­ity dis­or­ders. It can take years of psy­chother­apy to strengthen one’s pow­ers of emo­tional reg­u­la­tion.

Or, says a new study, it might take a few weeks of brain train­ing aimed at strength­en­ing one’s short-term memory…The results under­score that, if brain-training pro­grams are to have pos­i­tive effects away from the com­puter key­board — say, in a class­room — neu­ro­sci­en­tists will first have to iden­tify life skills that share neural cir­cuitry with nar­rower cog­ni­tive skills that can be strength­ened with repeated exer­cise. This may be a first step toward that.”

The arti­cle includes mar­ket num­bers from our recent mar­ket report and a quote from us: “Working-memory train­ing is emerg­ing as a key ingre­di­ent of broader efforts to improve emo­tional self-regulation and aca­d­e­mic per­for­mance among at-risk groups,” said Alvaro Fer­nan­dez, chief exec­u­tive of SharpBrains.com.

“What we need now is bet­ter ways to screen for stu­dents who may ben­e­fit from such an inter­ven­tion, and bet­ter ways to deliver and sup­port it.”

To Learn More

Think Those Chemicals Have Been Tested?

From The New York Times Sunday Review

By Ian Urbina
April 13, 2013

Many Americans assume that the chemicals in their shampoos, detergents and other consumer products have been thoroughly tested and proved to be safe. This assumption is wrong.

Unlike pharmaceuticals or pesticides, industrial chemicals do not have to be tested before they are put on the market. Under the law regulating chemicals, producers are only rarely required to provide the federal government with the information necessary to assess safety.

Regulators, doctors, environmentalists and the chemical industry agree that the country’s main chemical safety law, the Toxic Substances Control Act, needs fixing. It is the only major environmental statute whose core provisions have not been reauthorized or substantively updated since its adoption in the 1970s. They do not agree, however, on who should have to prove that a chemical is safe.

Currently this burden rests almost entirely on the federal government. Companies have to alert the Environmental Protection Agency before manufacturing or importing new chemicals. But then it is the E.P.A.’s job to review academic or industry data, or use computer modeling, to determine whether a new chemical poses risks.


Companies are not required to provide any safety data when they notify the agency about a new chemical, and they rarely do it voluntarily, although the E.P.A. can later request data if it can show there is a potential risk. If the E.P.A. does not take steps to block the new chemical within 90 days or suspend review until a company provides any requested data, the chemical is by default given a green light.

The law puts federal authorities in a bind. “It’s the worst kind of Catch-22,” said
Dr. Richard Denison, senior scientist at the Environmental Defense Fund. “Under this law, the E.P.A. can’t even require testing to determine whether a risk exists without first showing a risk is likely.”

As a result, the overwhelming majority of chemicals in use today have never been independently tested for safety.


In its history, the E.P.A. has mandated safety testing for only a small percentage of the 85,000 industrial chemicals available for use today. And once chemicals are in use, the burden on the E.P.A. is so high that it has succeeded in banning or restricting only five substances, and often only in specific applications: polychlorinated biphenyls, dioxin, hexavalent chromium, asbestos and chlorofluorocarbons.

Part of the growing pressure to update federal rules on chemical safety comes from advances in the science of biomonitoring, which tells us more about the chemicals to which we are exposed daily, like the bisphenol A (BPA) in can linings and hard plastics, the flame retardants in couches, the stain-resistant coatings on textiles and the nonylphenols in detergents, shampoos and paints.

Hazardous chemicals have become so ubiquitous that scientists now talk about babies being born pre-polluted, sometimes with hundreds of synthetic chemicals showing up in their blood.

It often takes a crisis to draw attention to how little the government knows about industrial chemicals in circulation. After the BP oil spill in the Gulf of Mexico in 2010, at least two million gallons of chemical dispersants were spread to break up the slick. But officials could not say they were safe because minimal testing had been done.

The current presumption that chemicals are “safe until proven dangerous” stands in marked contrast to how pharmaceuticals and pesticide companies are handled. Companies making these products have to generate extensive data demonstrating the safety of pharmaceuticals or pesticides before they are sold.

This was not always the case. Pharmaceutical companies used to be able to sell drugs with minimal prior testing, but that changed after a drug called Thalidomide, given in the 1950s to pregnant women for morning sickness, was found to cause severe birth defects the public outcry helped push the medical field to take a precautionary approach to introducing new drugs.


Federal reform of the toxic substances act may be coming. Last week, Senator Frank R. Lautenberg, Democrat of New Jersey, and Senator Kirsten E. Gillibrand, Democrat of New York, introduced a bill called the Safe Chemicals Act of 2013, which would require the chemical industry to demonstrate that a chemical is safe in order for it to be sold. The bill, which has more than 25 Democratic co-sponsors, would put limits on trade secret practices and requires industry to reduce use of the chemicals designated by the E.P.A. as being of “greatest concern” because they are most toxic.

The bill has strong support from environmentalists but opposition from the chemical industry. It has some similarities to rules that went into effect in the European Union in 2007.

Rather than adding more regulations, Calvin Dooley, president of the
American Chemistry Council, said in testimony that the “E.P.A. should take advantage of the massive amounts of data and information that the agency already has access to.” His organization has also argued that the bill risks raising costs, squelching innovation and putting American companies at a competitive disadvantage.

Senator David Vitter, Republican of Louisiana, is expected to introduce a competing bill that is likely to win the support of the chemical industry. While details about the bill are sparse, it aims to be less of a burden on industry. It would probably not require prior testing on many chemicals, and it would demand less data of companies than would Mr. Lautenberg’s bill.

The competing bills may end up splitting the Senate down party lines, which could doom reform altogether.

In the absence of federal action, more than 20 states have created their own toxic-substances programs to police chemical safety. Many business owners say this trend is creating a confusing patchwork. Health and environmental advocates counter that, pending effective federal reform, these programs are better than nothing at all.

For now, consumers and companies looking for safer products are on their own.


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Ian Urbina is an investigative reporter for The New York Times.

Saturday, April 27, 2013

Working Together as a Collaborative Team

From The Huffington Post Education Blog

By Jerome Schultz, Ph.D.
August 16, 2012

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Note: This is the first of two guest posts by Dr. Jerome Schultz

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For many students with brain-based learning disabilities, the unrelenting frustration involved in taking in, processing and producing information is a rather chronic condition. Way too many kids with LD experience school as a difficult, frustrating and emotionally unsettling place. Too few know the joys that come from repeated successes; too many are beaten down very early by the implied message that they are supposed to be able to do what the other kids do, and do it as easily.

In the pre-inclusionary times of the mid-seventies and early eighties, college graduates who had trained to be special educators found work in learning centers, resource rooms or self-contained programs that were designed to meet the needs of students with Learning Disabilities.


They had the time to work with a relatively small number of students and provide them with intensive, direct instruction -- an approach that these newly-minted teachers had learned would be effective with these students.

When well implemented, that model of service delivery worked amazingly well.

Kids with learning disabilities learned. They moved through school with a feeling of competence, and many became successful, happy and productive adults.

Many of us who worked in schools at this time thought that these were the "glory days" of the field of Learning Disabilities. But as it often does in special education, the pendulum of change began to swing.

Over the next several decades -- primarily as a consequence of the inclusion movement and the ascension of high stakes testing -- we have witnessed a dramatic reduction in specialized, intensive instructional programs for students with LD, and a corresponding large-scale return of students with LD and other types of disabilities to regular classes.


While the intentions of the inclusion movement were admirable -- a long overdue chance for handicapped individuals to experience the dignity that comes from equal opportunity -- the efficacy of so-called inclusion for students with learning disabilities was, and continues to be, a huge disappointment.

A majority of the teachers working in general education classrooms had been trained as "regular" teachers and not as special educators. Despite excellent training and praiseworthy teaching skills, many of these professionals find themselves insufficiently prepared or inadequately supported to meet the special needs of students with LD who have been assigned to their classes. If you doubt this, all you have to do is ask them when their boss is not listening.


The public assertion that inclusion is an effective approach for students with LD is simply an updated version of Hans Christian Andersen's tale of The Emperor's New Clothes. The failure of a general education delivery model for students with LD continues to result in long waiting lists at many excellent independent LD schools across the country. Just ask any special education director whose budgets are busted by "out-of-district" placements!

Despite abundant research and clinical observations that students with LD require and benefit from intensive instruction, this model is not often offered in public schools. Intensive instruction is characterized by flexible teaching approaches, use of a wide variety of instructional materials and technologies, and a belief that the goal of teaching is to accelerate student progress by any means possible.


This is a species of education that would be headed for extinction, were it not for the visions of a few brave souls who are breeding the few remaining specimens in an effort to increase the herd.

And there is a correlation between those out-of-district placement budgets and the efforts to breathe life into an old model. (Which, incidentally, turns out to be much less expensive than the private school option. Ask special education directors how many parents would be overjoyed if the school set up a self-contained, highly specialized, well-staffed in-house LD classroom.)

Suffice it to say that I am worried. As a psychologist specializing in the interaction of stress and learning disabilities, I am worried about the mental health of kids and I am worried about their families.


And as a teacher educator, I worry about teachers. A lot. Thousands of good general educators are being asked to educate millions of kids who need more than they have the time or expertise to give.

And don't get me started about the over-use of poorly trained instructional aides to solve this problem!

All is not gloom and doom. There is hope. From my perspective, one of the major contributions of inclusion when well conceived and well supported, has been the transformation that takes place when talented and motivated regular and special educators work together as members of a collaborative team. In schools that have "done inclusion right," I have witnessed the emergence of a new breed of professional who creatively builds bridges between curriculum and kids with learning disabilities, ADHD, Asperger Syndrome and other conditions that can derail learning.


In my next blog, I would like to introduce you what I have come to call the Hybrid Teacher. Not a solution for the dearth or (death) of self-contained specialized programs in which intensive specialized instruction can take place (clearly my preference), but perhaps a way to do some damage control.

About Dr. Jerome Schultz

Dr. Jerome Schultz is the author of Nowhere to Hide: Why Kids with ADHD and LD Hate School and What We Can Do About It (Jossey-Bass, 2011).

He is a Lecturer on Psychology in the Department of Psychiatry at Harvard Medical School. A former middle school special education teacher, Dr. Schultz is a consultant to several large school districts, and a frequent presenter at national and international conferences. He is on the Professional Advisory Board of the Learning Disabilities Association of America (www.ldanatl.org). He can be reached at www.jeromeschultz.com or on Twitter @docschultz.

So You're Thinking About Train-the-Brain Therapies?

From NCLD.org - The National Center for Learning Disabilities

By Sheldon H. Horowitz, Ed.D.
April 23, 2013

"We do not yet know how to target treatments to otherwise healthy individuals who struggle with learning, attention, memory, problem-solving, organization and different types of perception and judgment."

“Training-the-brain” is without question, a good thing to try to do, and we all do it all the time. Think about the first time you flipped an omelet. It got easier the more you practiced, right? And knotting a tie? How about learning to drive a car, or heading out on ice skates or the ski slope?

The human brain is comprised of more than 100 billion cells (neurons), each of which is connected to thousands of nearby cells as well as to many millions of other cells in almost every other region of the brain. Think about it: more than 100 trillion connections, sending and receiving information 24/7, every day of our life.

Every time we engage in an activity, no matter how small or seemingly effortless, we’re not just using one part of our brain.

Our brains are flooded with an almost constant stream of information, and while certain areas of the brain have been shown to be more active during certain types of tasks, we are still learning about the particular roles that certain areas and structures in the brain play during learning.

Underlying these types of approaches is the assumption that “practice makes perfect,” and even though we’re not quite sure what specific areas of the brain we are targeting, we imagine that engaging the brain in workout sessions will result in better, faster, more efficient thinking and learning.


The problem with this reasoning is simple: the brain is not a muscle. Providing it with practice (like swimming laps in a pool, doing sprints around a track, or spending hours developing the perfect jump shot) is not going to improve your ability to do anything but engage in the tasks that you’ve been practicing as part of the program.

What We’re NOT Talking About


There are lots of software programs and mobile apps that provide skill building instruction and practice in areas such as reading (decoding and comprehension), writing, and math.

They provide immediate feedback to the user and can be tailored to the individual in terms of reading level, pace of instruction, and types of feedback provided. Select the right programs, implement them with fidelity, provide additional “human” support and feedback, and you’re almost sure to see some positive results.

What We ARE Talking About


Then, there are programs intended to improve skills that underlie areas of weakness, and allege to improve brain function that, in turn, make it easier for individuals to benefit from instruction. And here’s where the rubber fails to meet the road.

The little scientific proof we have about effectively training or retraining the brain comes from “recovery of function” studies with patients who have suffered from strokes or other cerebral accidents, have undergone brain surgery or other types of treatment, suffer from diseases that affect brain functioning over time (such as multiple sclerosis), and who suffer from progressive forms of dementia.

We do not yet know how to target treatments to otherwise healthy individuals who struggle with learning, attention, memory, problem-solving, organization and different types of perception and judgment.

What Areas of Cognitive Processing Do These Types of Programs Target for Improvement?


The list includes:
  • Attention, concentration and impulsivity;
  • Motivation and perseverance;
  • Short-term (working) memory;
  • Visual and auditory information processing;
  • Analyzing and organizing information;
  • Problem-solving;
  • Self-checking and self-monitoring strategies;
  • Building awareness of possible repair (self-correction) strategies;
  • Planning and implementing strategies for studying and time management.

It makes sense that providing practice doing increasingly difficult tasks in each of these areas might help, but the jury is still out when it comes to answering the following key questions:
  • For which individuals are these treatments proven to work?
  • Does the ability to perform well on these tasks during training translate into enhanced skill in real life situations?
  • If benefit is reported by the individual who has undergone training, will the results be sustained over time and will the person be able to apply this new ability to new and different situations? (The answer to this question is critical to even trying to determine whether the “brain” has been “trained” in some way.)

Trial and error cannot answer these questions, and until we have better science to prove or disprove a particular treatment, parents and educators are left to shoulder the burden of
figuring out whether or not to try a particular therapy or approach.

To Train or Not to Train


Step 1: If you are ready to try one of these train-the-brain approaches, it means that you have already come to one of these conclusions:
  • The root of the problem is some underlying weakness or immaturity (in the brain) that can be fixed (or helped).
  • Remediating this lower-level weakness (how the brain processes a particular type of information) will improve the ability to perform higher level skills (such as reading and math).
  • There is no reason to discourage people from trying these types of approaches if they believe there is some benefit to be gained. Just “consumer be informed and beware,” especially if the training promises a “fix” or “cure.”

The potential value of these types of programs is that they condense activities and practice into time-limited games or challenges, and provide feedback that keeps the user engaged and wanting to do tasks over and over, at increasing levels of difficulty.

Do they help?

Well, people who play video games that involve shooting or driving, even for a relatively short time, have shown improvement in their ability to search for a target hidden among irrelevant distractions in complex scenes. Does this ensure better attention or decision-making on the soccer field or while engaged in reading complex social studies or science texts? (I bet you know the answer!)


Step 2: Think about the potential benefits and then reflect on some of the questions and concerns below.

Potential benefits of these treatments...


They provide practice in areas of functioning that are determined to be weak. Rather than running from or avoiding things that are hard to do, these treatments encourage people to learn why and how they struggle – and insight is always a good thing. But...

Questions/Concerns

Practice in “thinking” or “cognitive processing” has not been proven to translate into improved “knowing” or “doing.” For example, improving speed, accuracy and automaticity when clicking on a video screen is not going to make you a better, faster, or more accurate and efficient reader. Might it “prime the pump” for learning to read? (Perhaps, but there are no good scientific data to suggest they would.)

Potential benefits of these treatments...

They reinforce the importance of paying “attention,” improving “listening” and enhancing “memory.” But...

Questions/Concerns

Attention, listening, memory, and other such skills that are “trained” via these types of programs are situation specific. In other words, being good at the training exercises does not mean you’re going to be good at doing these same things in other settings or when faced with other, real-world challenges. (Some promising study in this area is ongoing with the Cogmed program.)

Potential benefits of these treatments...

It makes enormous sense to try to build competencies in these areas. But...

Questions/Concerns

If any benefit is to be gained, it is most likely to be with populations who demonstrate profound weakness in these areas (those with autism spectrum disorders, traumatic brain injury, and perhaps individuals who have serious language and/or communication disorders for whom highly-targeted training approaches like Earobics and FastForward have some good outcome data.

Potential benefits of these treatments...

They are often easy and fun to do. But...

Questions/Concerns

We like fun, but not if it takes time away from activities that could be more strategic and that will translate into measurable impact, such as improved time on task for homework, better note-taking, and better self-monitoring of performance.

Potential benefits of these treatments...

The electronic formats allow for easy access and immediate feedback. But...

Questions/Concerns

Feedback is essential but not at the sacrifice of real life, interpersonal interactions. Think about the difference between a kind or encouraging word, tap on the back, or smile from someone who can model a behavior or say “Let’s do this together” compared to a “You Won!” flashing on an LCD display.

Potential benefits of these treatments...

It can’t hurt. But...

Questions/Concerns

But for whom is it likely to be of help?

  • What specific types of weakness, in what particular type (or age) of learner, are most amenable to improvement given what particular type of brain training, over what period of time, and at what cost? 
  • Will any gains in “thinking” achieved be sustained over time? 
  • What else could I be doing that has a proven track record of success and strong efficacy data? 
  • How will I know whether it’s working or not, and when will I know to stop? (Please don’t say “when I get bored” or “when the money runs out."

Potential benefits of these treatments...

They can lead to feelings of accomplishment and self-confidence about having completed the training. But...

Questions/Concerns

True, but what if performance does not improve? There is the very real possibility that less than optimal results can lead to even greater self-doubt, trigger (or re-ignite) feelings of incompetence, and feed feelings of low expectations.

The Bottom Line about “Train-the-Brain” Programs
  • We don’t yet know how to train cognitive skills in individuals with LD or ADHD.
  • We cannot say which individuals will benefit from these types of training, whether the benefit transfers to real-life situations, and whether any benefit realized will last over time.
  • Unless studied carefully, we cannot attribute any changes we see in individuals to the use of these types of programs.

If you’re going to look for train-the-brain programs, avoid those that promise to help balance the brain, improve brain efficiency, enhance brain integration, restructure brain circuitry, repair cerebral disconnections, stimulate growth in brain circuitry, improve brain fitness and processing efficiency, or those that say they can fix anything but the kitchen sink.

These types of programs can be very engaging and lots of fun! Just know what they can and cannot do before you schedule time for your child in front of the computer.


Beyond Autism Genes: Epigenetic Differences in Identical Twins

From Autism Speaks' Science News

April 23, 2013

By studying identical twins who differ in autism traits, researchers find evidence of environmental influences on gene expression.

Researchers studying identical twins who differ in autism traits have identified what may be a major mechanism by which environmental influences contribute to – or protect against – autism. They did so by documenting tell-tale patterns in a biological system that controls gene activity without altering the genes themselves.

The
report appears online today in the journal Molecular Psychiatry. It was supported by a research grant from Autism Speaks.


This research represents the first large study to directly examine the role of epigenetics in the development of autism, says senior author Jonathan Mill, Ph.D., of King’s College London and the University of Exeter. Epigenetics refers to biological systems that control the expression, or activity, of genes without changing their underlying DNA code. It is a relatively new but rapidly advancing field of research.

Specifically, the researchers looked at DNA methylation, a mechanism that keeps genes locked in the off position. Using advanced technology, they compared areas of DNA methylation across the genomes (entire DNA sequence) of 100 identical twins (50 pairs). In some cases, both twins had autism.
In others, just one or neither was affected.

“We identified distinctive patterns of DNA methylation associated with autism diagnosis, related behavior traits and increasing severity of symptoms,” says lead author Chloe Wong, Ph.D., also of King’s College London.

The researchers also note that some of the distinctive differences appeared in regions of the genome associated with early brain development.

Beyond Autism Genetics

Over the last 20 years, research has shown that autism stems, in large part, from DNA changes, or mutations, in genes involved in brain development. Much of this evidence comes from studying twins – especially identical twins, who share the same genome – or complete set of genes. When one identical twin has autism, so does the other around 70 percent of the time.

“That nearly a third of identical twins differ in autism symptoms makes clear that there are also nongenetic influences at play in some cases,” Dr. Wong comments. Though they share the same womb, identical twins can experience different stresses during pregnancy and birth, she notes. Along these lines, studies have associated increased autism risk with certain birth complications. Exposure to certain chemicals during pregnancy or early infancy may also affect autism risk.

Still, the question remained, how do such nongenetic influences influence the development of autism? In recent years, research has suggested that they may do so through epigenetics. That is, by affecting the systems that turn genes on and off at the proper time and place.

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More on environmental epigenetics and autism HERE.

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Outside of the field of autism, a number of studies have shown that influences such as prenatal stress and exposure to certain pollutants produce epigenetic changes that can interfere with normal gene function.

A Landmark Study

“This is the first study to take a whole genome approach to studying epigenetic influences in twins who are genetically identical but have different symptoms,” comments Alycia Halladay, Ph.D., Autism Speaks senior director of environmental and clinical sciences. “These findings open the door to future discoveries in the role of epigenetics – in addition to genetics – in the development of autism symptoms.”

The study was the largest-ever of its kind. However, larger studies enrolling more individuals are needed to confirm the findings and explore their implications.

Research into the intersection between genetic and environmental influences is crucial, Dr. Mill concludes. “Sometimes risky environmental conditions can be avoided or even changed,” he notes. Potentially, advances in understanding autism epigenetics might also advance the development of tailored treatments.

In addition to funding by Autism Speaks, the study received support from the U.K. Medical Research Council. The twins were from the Twins Early Development Study, funded by the Medical Research Council and the U.S. National Institutes of Health.