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Wednesday, April 30, 2014

Wendy Chung: Autism — What We Know (and What We Don’t Know Yet)

From TED 2014

April 28, 2014

In this calm and factual talk, geneticist Wendy Chung shares what we know about autism spectrum disorder — for example, that autism has multiple, perhaps interlocking, causes.

Looking beyond the worry and concern that can surround a diagnosis, Chung and her team look at what we've learned through studies, treatments and careful listening.

Why You Should Watch

At the Simons Foundation, Wendy Chung is working to characterize behavior, brain structure and function in people with genetic variations that may relate to autism.

She is the director of clinical research at the Simons Foundation Autism Research Initiative, which does both basic and applied science to serve people affected by autism spectrum disorders. She's the principal investigator of the foundation's Simons Variation in Individuals Project, which characterizes behavior and brain structure and function in participants with genetic copy number variants such as those at 16p11.2, which are believed to play a role in spectrum disorders.

Chung also directs the clinical genetics program at Columbia University. In assessing and treating kids with autism spectrum disorders and intellectual disabilities, she uses advanced genomic diagnostics to explore the genetic basis of neurological conditions. She thinks deeply about the ethical and emotional questions around genetic medicine and genetic testing.

What Others Say

"She has a humanistic philosophy that animates everything she does. ... She's not only thinking on all cylinders, but also feeling on all cylinders."
— Hamilton Cain, parent of a patient, author of "This Boy’s Faith"

Book Review: Parenting the Whole Child

From PsychCentral

Reviewed by Tamara Hill, M.S.
April 28, 2014

The brain is a fascinating organ. It weighs about three pounds when fully grown, and entails a plethora of complicated electrical and chemical processes that can stump the savviest of scientists. Encased in a jelly-like substance in the skull, it is thought to separate human beings from other animals, and allows for the sophisticated thought processes, emotions, and behaviors exhibited throughout our lives.

But although we have quite a complex, resilient brain, poor health, age, stress, abuse, neglect, trauma, substance abuse, and a host of other life circumstances can affect its functionality in negative ways. Different brains cope with trauma differently — some more able to withstand it, some less. Meanwhile, a child’s brain is especially complicated — and requires a host of positive experiences to remain healthy.

In Parenting the Whole Child, Scott Shannon, a professor of psychiatry, sets the stage for families to understand their child’s mind.

That mind is ever-developing, producing billions of neurons at birth and continuing throughout life. Thus it is important that parents understand how to properly treat the developing brain of their child, Shannon argues, and to identify unhealthy experiences that may negatively affect how that brain grows. To that end, Shannon shares his frustration with how much suffering our children experience today. 

“The rhetoric just isn’t matching the reality,” he writes. “If no child is meant to be left behind, why are so many of our children being diagnosed with major psychiatric illnesses? Why are so many of our children doing so poorly in school or suffering socially? And why are so many of our families stressed by conflict and tension?”

Shannon goes on to explain that “the behavioral and emotional problems we see in our children today are too readily being considered and treated as medical problems rather than being addressed as the relational, nutritional, and environmental problems they are.”

In other words, rather than diagnose children with illnesses and problems, Shannon urges us to see that there are some children who are simply undernourished, overmedicated, and struggling with interpersonal relationships and poor brain health. After all, behavioral and emotional problems are often likely if brain health, nutrition, and proper diet are ignored.

As a clinician myself, I see how in the wake of the new DSM-5 guidebook it can be difficult to distinguish true mental or behavioral health concerns from normative development.

In fact, critics of the revised manual state that with diagnoses such as communication disorder, disruptive mood dysregulation disorder, premenstrual dysphoric disorder, and dis-inhibited social engagement disorder, it is now even more difficult to separate illness from challenges of development.

Temper tantrums, for example, are normative for many young children — even for tired adults. But whereas the DSM-5 will likely turn temper tantrums into disruptive mood dysregulation disorder, Shannon attempts to keep the diagnostic-labeling fad at bay by highlighting the importance of examining the whole child.

“We’re a culture that just isn’t comfortable with the gray areas, with difference,” he writes. “We want things to fit into simple categories. We want things to be neat and tidy. We seem to want everything in our lives, even our kids, to conform to an ever shifting and shrinking definition of ‘normal.’ We’re even willing to medicate our children in order to achieve this mythical state.”

So, in easy-to-understand language, Shannon asks us to take a step back and take a more holistic approach: to consider the challenges of normative development, the effects of negative life experience, and the deleterious effects of poor nutrition on child development.

As a child and adolescent healthcare provider, I support the way Shannon encourages the public to think about children and their brains in nuanced terms and to take a holistic approach to their well-being. I see firsthand the concerns many parents have about medicating their kids. Those concerns are legitimate: Medication is not the only “remedy” for the brain.

Indeed, we humans, especially those with still-growing minds, require extensive evaluation and sometimes complicated treatments. With his keen understanding of this, Shannon has written a must-read for parents.


Parenting the Whole Child: A Holistic Child Psychiatrist Offers Practical Wisdom on Behavior, Brain Health, Nutrition, Exercise, Family Life, Peer Relationships, School Life, Trauma, Medication, and More…
W. W. Norton & Company, February, 2014
Paperback, 304 pages

Psych Central's Recommendation: Worth Your Time! +++

What Have We Learned About Special Education in 20 Years?

From Education Development Center, Inc.

April 21, 2014

To mark its 20th anniversary, EDC's Urban Special Education Leadership Collaborative will host a panel discussion that focuses on two decades of achievements in the field of special education and looks ahead to how the field may evolve.

The discussion will take place during the Collaborative’s spring meeting, April 30 – May 3 in Boston.The meeting’s theme is “Bridges to Learning: Providing High-Quality Social, Emotional, and Behavioral Supports to Students in Urban Schools.”

The Collaborative, a national network of approximately 100 school districts, works to improve educational outcomes and life opportunities for children and youth with disabilities in urban schools. More than 250 special education leaders and school district administrators supporting students with and without disabilities in urban schools are expected to attend.

They will share information and ideas on effective practices and discuss practical, real-world solutions to some of the challenges they face within their own districts.

EDC’s David Riley, the Collaborative’s executive director, will moderate the panel, “Educating Students with Disabilities in Urban Schools, a 20-year Retrospective.”

Participants include the following:
  • Thomas Hehir, professor of Practice in Learning Differences, Graduate School of Education, Harvard University
  • William Henderson, author and retired principal, Dr. William W. Henderson Inclusion School, Boston
  • Cathy Jackson, special education teacher, Brockton Public Schools, Brockton, MA
  • Marcia Mittnacht, state director of special education, Massachusetts Department of Elementary and Secondary Education
  • Ana Morales, senior family support specialist, Seven Hills Family Support Center, Worcester, MA
  • Kay Seale, manager of special education and intervention services, Worcester Public Schools
“We are thrilled to have such well-known voices from the field share their thoughts with us as we mark our two decades of advancing education for students with disabilities,” said Riley.

“We’ve come a long way in terms of what we know about teaching and learning. I look forward to hearing from our panel and meeting participants their predictions of where we are headed.”

The discussion will take place Thursday, May 1, from 11:00am to 12:15pm at Boston’s Park Plaza Hotel. The panel and all of the sessions are designed for both special and general education leaders. To learn more, go to www.urbancollaborative.org.


Education Development Center, Inc. (EDC) designs, implements, and evaluates programs to improve education, health, and economic opportunity worldwide. EDC manage 250 projects in 30 countries. Visit www.edc.org.

The Urban Special Education Collaborative was founded in 1994 to provide leadership development and networking opportunities uniquely designed to support urban special and general education administrators. Celebrating its 20th year, the Collaborative has grown to include special education leaders in more than 100 urban districts.

Visit www.urbancollaborative.org.

Tuesday, April 29, 2014

Brains Don't Recover During Football's Off-Season

From the University of Rochester
via Futurity.org

By Leslie Orr
April 17, 2014

Six months off after regular season play may not be long enough for the brains of football players to completely, putting them at even greater risk of head injury the next season.

“I don’t want to be an alarmist, but this is something to be concerned about,” says Jeffrey J. Bazarian, associate professor of emergency medicine at the University of Rochester School of Medicine, and lead author of the study, published in PLOS ONE.

“At this point we don’t know the implications, but there is a valid concern that six months of no-contact rest may not be enough for some players,” he says. “And the reality of high school, college, and professional athletics is that most players don’t actually rest during the off-season. They continue to train and push themselves and prepare for the next season.”

The players in the study sustained between 431 and 1,850
head blows during the season with no concussions.
They also found that white matter changes in the their
brains started to look different when players
experienced as few as 10 to 15 head impacts.

Bazarian investigated the brains of 10 Division III University of Rochester football players before the start of the 2011 season, at the conclusion of the season, and after six months of no-contact rest. All took part in daily practices and weekly games, but none of them suffered a concussion.

Imaging scans showed changes consistent with mild brain injury in about half of the players six-months after the season ended, despite the fact that no one had a concussion. Brain changes in the football players were compared to a control group of five college students who didn’t play contact sports.


The new data also suggest that inflammation may be a key factor in whether players recovered within six months. Levels of inflammatory markers present in a player’s blood sample correlated with a lack of complete brain recovery

“What is an adequate rest period? We don’t know. Six months may be enough for some players but not for others,” Bazarian says. “The autoimmune response and inflammation we observed in the blood of players who didn’t recover could be a result of genetics, diet, or other factors, but it was not the result of a concussion, since none of the athletes suffered one.”

Hit Counts

Bazarian notes that his goal is not to derail football, but to make the sport safer. One idea that has been proposed by organizations such as the Sports Legacy Institute is to implement a system similar to the pitch count used in baseball.

In football, this would mean identifying a threshold number of head hits of a certain force—above which the brain is likely to develop white matter changes consistent with injury, and removing players from the game once they reach that threshold.

Some in the field have also proposed that no child under the age of 14 should have head contact in football, Bazarian says, and the National Collegiate Athletic Association or NCAA is considering a limit of two contact-practices a week.

The college players who participated in the study wore accelerometers mounted inside their helmets, which were provided by Riddell, a leading manufacturer of football equipment. Researchers were able to track every hit, from seemingly light blows in practice to the most dangerous type of hit—a bobble head phenomenon known as rotational acceleration.

They found that the players sustained between 431 and 1,850 head blows in the single football season, none of which resulted in a concussion.

Investigators observed brain changes with advanced technology called diffusion tensor imaging (DTI), which is similar to an MRI scan. They also measured changes with standard balance and cognitive tests and blood tests.

White Matter

Bazarian’s analysis revealed that white matter changes in the players’ brains started to look different from the control group when players experienced as few as 10 to 15 head impacts with a rotational acceleration that exceeded 6000 rads/sec2. For reference, when a person nods his head up and down as fast as possible, this produces a rotational acceleration of approximately 180 rads/sec2.

Future studies are needed, and already a follow-up project is underway to focus on inflammation. Ten additional football players were added to the 2011 data, for a total of 20 players plus the five controls. In collaboration with researchers from Harvard Medical School and the Cleveland Clinic, Bazarian’s group is analyzing inflammatory markers in the blood of the players and comparing them to the DTI images.


In addition researchers from the University of Rochester, contributors from the Cleveland Clinic Lerner Research Institute and Hamilton College participated as well.

Bazarian disclosed that he has a patent pending for a new method to diagnose mild brain injury and that he is a consultant to Banyan Biomarkers.

The National Football League Charities supported the study. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Inside the Mind of a Child with Autism

From The New York Times Parenting Blog

By Benedict Carey
April 7, 2014

Therapists who specialize in autism often use a child’s own interests, toys or obsessions as a way to connect, and sometimes to reward effort and progress on social skills. The more eye contact a child makes, for example, the more play time he or she gets with those precious maps or stuffed animals.

But now a group of scientists and the author of a new book are suggesting that those favorite activities could be harnessed in a deeper, more organic way. If a child is fascinated with animated characters like Thomas the Tank Engine, why not use those characters to prompt and reinforce social development?

Millions of parents do this routinely, if not systematically, flopping down on the floor with a socially distant child to playact the characters themselves.

Christopher Capozziello for The New York Times.
M.R.I.s of an autistic child’s brain before and after
pivotal response treatment at Yale.

“We individualize therapy to each child already, so if the child has an affinity for certain animated characters, it’s absolutely worth studying a therapy that incorporates those characters meaningfully,” said Kevin Pelphrey, director of the child neuroscience laboratory at Yale.

He and several other researchers, including John D. E. Gabrieli of M.I.T., Simon Baron-Cohen of the University of Cambridge and Pamela Ventola of Yale, are proposing a study to test the approach.

The idea came from Ron Suskind, a former Wall Street Journal reporter whose new book “Life, Animated” describes his family’s experience reaching their autistic son, Owen, through his fascination with Disney movies like “The Little Mermaid” and “Beauty and the Beast.” It was Mr. Suskind’s story that first referred to ‘“affinity therapy.” He approached the researchers to put together a clinical trial based on the idea that some children can develop social and emotional instincts through the characters they love.

Experts familiar with his story say the theory behind the therapy is plausible, given what’s known from years of studying the effects of other approaches.

“The hypothesis they have put forward is sound, and absolutely worth studying,” said Sally J. Rogers, a professor of psychiatry at the MIND Institute of the University of California, Davis.

“If you think about these animated characters, they’re strong visual stimuli; the emotions of the characters are exaggerated, those eyebrows and the big eyes, the music accompanying the expressions. Watching those characters is the way many of us learned scripts that are appropriate in social situations.”

But Dr. Rogers cautioned that using animated characters is hardly the key to reaching all autistic children. Many are fascinated by objects or topics without inherent social content — maps, for instance. But for those who fixate on movies, television shows or animated characters, affinity therapy makes sense, she said.

The researchers brought together by Mr. Suskind have written a proposal for a study of the approach. It calls for a 16-week trial for 68 children with autism, ages 4 to 6. Half the children would receive affinity therapy, using the shows or movies they love as a framework to enhance social interaction, building crucial abilities like making eye contact and joint play.

The other half, the control group, would engage in the same amount of interaction with a therapist but in free play, led by the child’s interest. Therapists have had some success using the latter approach, most notably in a therapy called Floortime, developed by Dr. Stanley Greenspan.

In autism therapy, progress is measured in increments and tends to be slow, especially in severely affected children, experts say. But the disorder — the autism spectrum, as it’s known — includes a very diverse group of children whose prospects for improvement are unpredictable and individual. Some children develop social skills relatively quickly, while others are stubbornly unreachable.

Dr. Pelphrey said that the affinity approach would incorporate many elements of pivotal response treatment, a type of therapy being intensely studied. It incorporates a system of rewards into normal interactions between a therapist (or parent) and the child, playing together.

Sarah Calzone of Stratford, Conn., said her son, now 7 years old, became more socially adept in a pivotal response trial at Yale. “The way it works is that, for instance, one time the therapist was playing with my son, blowing bubbles,” Ms. Calzone said. “Then the therapist stopped and looked away. Of course my son still wanted to see the bubbles, so he had to stop, too, and look in the same direction, then make eye contact and ask to continue.”

Those two responses, making eye contact and so-called perspective taking, recognizing another person’s point of view, developed quickly in the therapy. Her son, who has engaged in various therapies nearly every day for most of his life, is now in regular classes at school.

Dr. Pelphrey said that affinity therapy would deploy some of the same techniques, with the therapist playacting a favorite character and inhabiting the scenes with the child.

“Instead of watching Thomas the Tank Engine as a reward, for instance, we would have the child enter the social setting, with Thomas and Percy and the other characters,” and learn through them about eye contact, joint play and friendship, he said. The scientists plan to submit their study proposal to the National Institute of Mental Health for funding.

“The whole thing has been exciting, and a little weird,” said Mr. Suskind, now a senior fellow at Harvard, “having these leading neuroscientists listen to me and say, ‘O.K., what can we do to help?’ ”

Monday, April 28, 2014

For Parents, Happiness Is A Very High Bar

From TED 2014

March, 2014

In her new book "All Joy and No Fun," Jennifer Senior explores how children reshape their parents' lives — for better and worse.

The parenting section of the bookstore is overwhelming—it's "a giant, candy-colored monument to our collective panic," as writer Jennifer Senior puts it. Why is parenthood filled with so much anxiety? Because the goal of modern, middle-class parents—to raise happy children—is so elusive. In this honest talk, she offers some kinder and more achievable aims.

Why You Should Listen

Jennifer Senior is a contributing editor at New York Magazine, where she writes profiles and cover stories about politics, social science and mental health. In a groundbreaking, 2010 story for the magazine, called "All Joy and No Fun: Why Parents Hate Parenting," she examined the social science around modern parenting, looking at happiness research from Dan Gilbert, Danny Kahneman and others, as well as anthropological research (she was an anthro major) around how families behave.

Her conclusion? Hey, parents, it's okay not to feel blissfully happy all the time.

She expanded the piece into a book that dives deeper into the research and paradoxes of modern American parenting styles -- including parents' sometimes inflated expectations of constant awesomeness, meaningfulness and bliss. As she says, "I think of this book as a series of mini-ethnographies -- portraits of how American families live now."
What Others Say

"'All Joy and No Fun' captures the complex texture of parents' lives, the joys and the sorrows, highs and lows, with remarkable insight, intelligence, sensitivity, and subtlety."
— Alison Gopnik

Researchers Use Gene Activity to Map Developing Brain

From Autism Speaks Science

April 7, 2014

First major report from BrainSpan Atlas project tracks gene activity in the developing brain; possible insights into autism.

Reporting in the journal Nature, researchers describe how they generated a blueprint for the developing human brain by building a detailed map of where genes turn on and off during mid-pregnancy. Their report emphasizes insights into the genetic origins of developmental disorders such as autism and schizophrenia.

“Knowing where a gene is expressed in the brain can provide powerful clues about what its role is,” says lead investigator Ed Lein, of Seattle’s Allen Institute for Brain Science.

“This means that we have a blueprint for human development, an understanding of the crucial pieces necessary for the brain to form in a normal, healthy way and a powerful way to investigate what goes wrong in disease.”

Investigators with the BrainSpan Atlas project built a
detailed map of the developing brain at mid-pregnancy.
The image here shows the formation of connections between
brain regions. Image:Allen Institute for Brain Science.

The report represents the first major findings using data from the BrainSpan Atlas of the Developing Human Brain, a major research initiative funded by the National Institute of Mental Health. The brain maps and other information generated by the project become freely available to researchers worldwide. (Access the maps and other data here.)

In their study, the researchers used the BrainSpan Atlas to examine a number of genes that previous research had linked to autism.

“We used the maps we created to find a hub of genetic action linked to autism,” Dr. Lein says. This hub of prenatal gene activity involved the formation of neurons in the cortex, a brain region involved in many features of autism including social behavior.

“This is a seminal study that will influence neurodevelopmental research and medicine well into the future,” comments Daniel Smith, Autism Speaks senior director of discovery neuroscience. “The fine brain mapping at the heart of this project gives us new, deeper insight into the development of the brain. It’s a big step in available tools to bridge genetics, brain development and pathophysiology, and ultimately for making better medicines.”

The Nature report comes on the heels of related discoveries, published in the New England Journal of Medicine, showing a common pattern of disrupted prenatal brain development in children who had autism. (Read our news story here.)

To hear a National Public Radio segment on the BrainSpan Atlas study, click HERE.

Sunday, April 27, 2014

Staying Back a Grade

From GreatSchools.org

By Jessica Kelmon
April 13, 2014

Grade retention is increasingly common - but research suggests it can be harmful. What are parents of struggling kids supposed to do?

If doctors use crackpot treatments that hurt patients, they face consequences.

Ironically, that’s the situation popping up across the country: Despite almost 100 years of research showing mostly harmful academic and social effects from repeating a grade, in the past few years many of our nation’s largest school systems (inc. New York, Chicago, and Los Angeles) have implemented mandatory retention policies at various grade levels.

But if kids aren’t learning the skills, something must be done, right?

A few years ago, social promotion — pushing kids to the next grade irrespective of their academic abilities — came under fire. The practice became a rallying point for education reformers who were concerned that educators had gotten in the habit of just passing kids from one grade level to the next with no accountability.

“Social promotion is the main problem in our education system now,” says Pat Lamb, a teacher who in her long career has taught everything from Kindergarten to Home Economics to GED courses. “In 19 years [teaching GED classes], I can count on two hands the number of students who knew their multiplication tables. And these are typically taught in the third grade,” she says.

Lamb advocates learning levels that are based on skill acquisition, not age. She’s often heard her GED students say that classes moved too fast. In her opinion, “They weren’t succeeding because they were passed along to deeper waters when they weren’t ready.”

One of her own children was held back in fourth grade. “It gave him a chance to learn in more detail what was covered,” she says. “He became an excellent reader.”

Is flunking educational malpractice?

While an extra year sounds relatively benign, “research fails to support the benefits,” says Shane Jimerson, Professor of School Psychology at University of California at Santa Barbara. In fact, the National Association of School Psychologists’ review of the research has prompted the entire organization to oppose grade retention. For the most part, research shows “deleterious effects” for the child, both academically and socially.

For example, research on grade retention shows the initial academic gains from the hold-back decline within two to three years. Over time, all academic areas — reading, math, and language — are negatively impacted (with reading being the hardest hit). In the long run, grade retention is associated with increased behavioral problems, which tend to worsen as the child hits adolescence.

Retained students have increased risks of alcohol and drug use, smoking, suicidal intentions, and violent behavior. Moreover, retention is one of the most powerful predictors of high school dropout.

In a long-term study, grade repeaters and low-achievers who were promoted were compared when they reached age 20. The students who repeated a grade earned less per hour and had lower employment statuses. In contrast, by age 20, those low-achieving students who were promoted had jobs comparable to a general population of peers. The study also found that as adults, grade repeaters were more likely to be unemployed, on welfare, or in prison. The picture is not positive.

But in many districts, the choice is no longer up to the parents. When Sandy Smith’s son was about three months into first grade, his teacher informed Smith that her son was behind and that she might recommend he repeat first grade. In their Los Angeles Unified School District school, retention in first grade is up to the parent’s discretion, but by law the teacher can hold children back irrespective of parents’ wishes in second grade.

“At first, it’s kind of a pride thing,” Smith says, recalling her determination to prevent her son from “flunking” first grade. She worked with the teacher to identify her son’s obstacle: reading comprehension. Smith enrolled her son in a computer-based tutoring program twice a week after school. Tutoring made a small but measurable difference. At Smith’s discretion, her son was promoted to second grade.

Smith’s main concerns for her son were social. She didn’t want him teased or ostracized by his peers. She did her best to address the reading problem with tutoring and she chose to advance her son with his class, even though he was behind.

But the experts argue that social promotion is not an answer, either. “The evidence indicates that we must move beyond grade retention and social promotion,” Jimerson says. “Instead, educational professionals must focus on interventions that build upon the strengths of students and target their needs.”

So what’s the parent of a struggling child to do? First, you need an appropriate assessment to evaluate your child’s area of skills and need.

Then, take a targeted approach to help learning in those specific areas. Perhaps most importantly, monitor the progress every week (at a minimum). Start immediately and don’t forget to use the summer. “It’s documented that most kids have an academic decline over the summer,” Jimerson says. “That’s your opportunity to narrow the gap: You have an immediate opportunity in those three or four months of summer to provide targeted instruction to address a child’s needs,” he says.

For children struggling emotionally rather than academically, the same approach applies. “Acts immature” doesn’t tell us much, Jimerson says, but an assessment that finds poor problem-solving skills and poor self-regulation (they’re often intertwined) gives you something to work with. “Targeted over the summer, a child can clearly build these skills,” he says.

For Smith’s son, the tutoring method didn’t work. “About halfway through second grade he got really bogged down with the work,” Smith says. “He couldn’t keep up the pace. His little life got really stressful.” Her son was subject to mandatory retention. Luckily, the school addressed Smith’s fears. When school started the following year, her son was in a new second grade class that was physically far from the third grade class her son would have otherwise been in so the kids didn’t see each other in the halls much. Social activities like cub scouts and karate kept her son confident and happy.

Smith’s son is now faring quite well in high school. “His brain needed another year to grow,” she says simply. “Really, there have been no issues ever since.” All in all, despite her initial hesitation, Smith has nothing but positive things to say about her son’s experience with retention.

In New York City, mandatory retention grades are third, fifth, seventh, and eighth. The system’s retention program, while test-based at its heart, isn’t only about scores. Research shows that students’ experiences with retention vary greatly when “supportive programs” — like early identification of at-risk students, small-group instruction, after-school programs, assessments, individual education plans (IEPs), and summer school — are part of the intervention.

This is more in line with what Jimerson and the National Association of School Psychologists advocate for: individualized assessment and targeted attention.

Studies of New York City’s retention program have shown moderately positive results, at least so far, but Jimerson warns that parents should be wary of a test-based retention policy that doesn’t include individualized, targeted strategies to help their child learn.

“Mandated grade retention appears to hold the student accountable, and fails to detail what specifically will be done during the subsequent year to address the student’s areas of need,” he says. And without that targeted intervention, “research fails to support grade retention.”

Study Flags Role of Birth Complications in Autism

From SFARI.org
The Simons Foundation Autism Research Initiative

By Sarah DeWeerdt
April 4, 2014

Three factors related to childbirth - preterm delivery, small size at birth and cesarean delivery, contribute to more than 10 percent of autism cases in the U.S., according to a study published in the April issue of Annals of Epidemiology.

Several studies have documented associations between autism and ‘perinatal’ risk factors — those occurring around the time of birth. For example, researchers have found that the risk of autism jumps up for babies born early or underweight compared with full-term, healthy-weight babies.

But simply showing a correlation leaves open the question of whether one causes the other.

The new study is the first to investigate the population-attributable fraction (PAF) for each risk factor. This statistic captures the proportion of autism cases that would not arise if a given risk factor were eliminated. An analysis of this sort does not prove that perinatal risk factors cause autism directly but represents a mathematically rigorous step forward...

Read the rest of this article HERE.

Saturday, April 26, 2014

Low-Dose Interventions for ADHD On the Horizon?

From Smart Kids with LD

April 20, 2014

"Our data show that stimulant doses can be reduced dramatically if a child is treated with behavior modification."

Researchers at Florida International University’s Center for Children and Families have found that low doses of medication in conjunction with low doses of behavioral therapy may be an effective combination for treating ADHD.

In a recent report in Medical Press summarizing the findings, the study’s lead author, William E. Pelham, Jr, explained the implication of the results:

"Our data show that stimulant doses can be reduced dramatically if a child is treated with behavior modification. Given concerns about long-term side effects of these medications, such as growth reduction, providing behavioral interventions would appear to minimize the need for medication and maximize response to very low doses for the majority of children with ADHD."

Although this was a small study—participants included 48 children, ages 5 to 12, diagnosed with ADHD—it is one of several FIU studies funded by the National Institute of Mental Health examining the combination of medication and behavioral interventions for children with ADHD.

According to the Medical Press article, this study suggests that “a child who experiences side effects from medication may benefit from a decrease in dosage coupled with low levels of behavior modification,” according to Pelham. Plus, low levels of behavior modification may be implemented at home and school since parents and teachers may provide the requisite framework for the child.

If replicated, these findings could pave the way for improved ADHD treatments.

How Does IQ Relate to Personality?

From the Psychology Today Blog "Beautiful Minds"

By Scott Barry Kaufman
April 21, 2014

Personality and IQ have traditionally been viewed as distinct domains of human functioning. However, research over the past three decades suggests that IQ is a personality trait. In an excellent chapter in The Cambridge Handbook of Intelligence, personality neuroscientist Colin DeYoung points out that many personality traits involve cognitive processes and abilities.

It’s just that IQ is primarily measured with ability tests, whereas personality tests are primarily measured with questionnaires. But this is more a reflection of a lack of ingenuity on the part of psychologists than a real difference in domain of human functioning.

It’s theoretically possible to measure personality traits through ability tests. For instance, agreeableness could be measured through tests of perspective taking, conscientiousness could be measured through tests of self-control, and neuroticism could be measured through measures of emotional self-regulation.

Viewing IQ as a personality trait is helpful because it puts IQ in perspective. We can take a birds eye view of all the many fascinating ways we differ from one another in cognitive processing, emotion, and motivation, while seeing where IQ fits into that bigger picture.

To help us see that picture, I analyzed data from the Eugene-Springfield community sample, which consisted of 478 mostly White participants from Eugene and Springfield, Oregon. Participants ranged in age from 20 to 85 years, and spanned all levels of educational attainment. The sample consisted of 199 males and 279 females.

While the sample isn’t ethnically diverse, it does have a pretty good range of IQ and personality, so we can get some sense of how IQ relates to personality in the general population.

The IQ test that participants took consisted of 15 multiple-choice items that measured knowledge and abstract reasoning. The personality test measured 45 dimensions of human personality.

Consistent with prior research, IQ was most strongly related to openness to experience. Out of 9 dimensions of openness to experience, 8 out of 9 were positively related to IQ: intellectual engagement, intellectual creativity, mental quickness, intellectual competence, introspection, ingenuity, intellectual depth, and imagination. Interestingly, IQ was much more strongly related to intellectual engagement and mental quickness than imagination, ingenuity, or intellectual depth, and IQ was not related to sensitivity to beauty.

Out of 45 dimensions of personality, 23 dimensions were not related to IQ. These included gregariousness, friendliness, assertiveness, poise, talkativeness, social understanding, warmth, pleasantness, empathy, cooperation, sympathy, conscientiousness, efficiency, dutifulness, purposefulness, cautiousness, rationality, perfectionism, calmness, impulse control, imperturbability, cool-headedness, and tranquility. These qualities were not directly relevant to IQ.

8 dimensions of personality outside the openness to experience domain were positively related to IQ, including organization, toughness, provocativeness, leadership, self-disclosure, emotional stability, moderation, and happiness– although the correlations were much smaller than with intellectual engagement and mental quickness.

IQ was negatively related to orderliness, morality, nurturance, tenderness, and sociability, but again, the negative correlations were much smaller than the relationships among IQ, intellectual engagement, and mental quickness.

Given this data, where does IQ fit into the personality puzzle? While this is just a single dataset, it is consistent with other studies suggesting that the most relevant personality domain is openness to experience, particularly the dimensions that reflect the ability and drive for conscious exploration of inner mental experience.

This is certainly an important slice of personality, but at the same time these findings illustrate that there are many more ways we differ from each other in cognition, emotion, and motivation that are not well measured by IQ tests.

Friday, April 25, 2014

Disabling Segregation: Dan Habib at TEDx AmoskeagMillyard

From TEDx
April 22, 2014

Photojournalist Dan Habib didn't give much thought to disability — until his son Samuel was born with cerebral palsy.

In this emotional talk, the disability-rights advocate explains his family's fight to ensure an inclusive education for Samuel, and how inclusion benefits not just Samuel and those who are included, but all of us.

Dan Habib is the director, producer and cinematographer of the Emmy-nominated documentary, Including Samuel.

Habib's second film, Who Cares About Kelsey?, documents the lives of students with emotional and behavioral disabilities, and shows innovative educational approaches that help these students to succeed—while improving the overall school culture and climate.

About TEDx AmoskeagMillyard

TEDxAmoskeagMillyard 2013 was hosted by Southern New Hampshire University on November 2, 2013. The theme was MINDSET, the mental attitudes that impact our choices and actions, ultimately influencing our results. From conquering fear to changing perspectives, we explored the many ways outlook, emotions, and beliefs affect our mindset.

We also investigated how the mindset we cultivate shapes our path, impacts our organizations, and has the potential to transform our communities. Learn more: http://tedxamoskeagmillyard.org

Brain Changes Suggest Autism Starts in the Womb

From NPR's Health Blog "Shots"

By Jon Hamilton
March 26, 2014

Listen to the Story (4:16) on All Things Considered

Researchers say intervention in early childhood may help
the developing brain compensate by rewiring to work
around the trouble spots. iStockphoto

The symptoms of autism may not be obvious until a child is a toddler, but the disorder itself appears to begin well before birth.

Brain tissue taken from children who died and also happened to have autism revealed patches of disorganization in the cortex, a thin sheet of cells that's critical for learning and memory, researchers report in the New England Journal of Medicine. Tissue samples from children without autism didn't have those characteristic patches.

Organization of the cortex begins in the second trimester of pregnancy. "So something must have gone wrong at or before that time," says Eric Courchesne, an author of the paper and director of the Autism Center of Excellence at the University of California, San Diego.

The finding should bolster efforts to understand how genes control brain development and lead to autism. It also suggests that treatment should start early in childhood, when the brain is capable of rewiring to work around damaged areas.

The study grew out of research by Courchesne on development of the cortex in children with autism. In typical kids, the cortex is "like a layer cake," he says. "There are six layers, one on top of the other, and in each layer there are different types of brain cells."

Courchesne suspected that these layers might be altered in the brains of children with autism. So he and a team of researchers studied samples of cortex from 11 children with autism and an equal number of typical kids. The cortex came from areas known to be associated with the symptoms of autism.

In the brain tissue from typical children, the cortex had six distinct layers, each made up of a specific type of cell. But in the children with autism, "there are patches in which specific cells in specific layers seem to be missing," Courchesne says. So instead of distinct layers, there are disorganized collections of brain cells.

These patches of disorganized cortex would have different effects on the brain depending on where they occur and how many there are, Courchesne says. That could help explain why the symptoms of autism vary so much.

And finding that the damage isn't everywhere suggests how a child's brain might compensate by rewiring to avoid the trouble spots, Courchesne says. "That's one of our guesses about how it is that autistic children, with treatment, very commonly get better," he says.

The new study appears to confirm research from the University of California, Los Angeles showing that people with autism tend to have genetic changes that could disturb the formation of layers in the cortex.

And it adds to the already considerable evidence that autism starts in the womb, says Dr. Stanley Nelson, a geneticist at UCLA. "The overwhelming set of data is that the problems are existing during brain development, probably as an embryo or fetus," he says.

But some of the new study's findings are surprising and even a bit perplexing, Nelson says. For example, it's odd that only certain bits of brain tissue contain these disorganized cells. "Why is the whole cortex not disorganized?" he says.

Shots - Health News
Study Linking Childhood Vaccine And Autism Was Fraudulent

It's also odd that 10 of the 11 children with autism had the same sort of disorganized patches of cortex, Nelson says. That's not what you would expect with a disorder known to involve many different genes, presumably affecting many different aspects of brain development.

So he'd like to know what researchers would find if they looked at hundreds of brains instead of just a few. "What fraction of all the kids with autism are going to have these small patches?" he says. "I think the jury's out on that."

Nelson is right that there's no clear answer yet, says Ed Lein, one of the paper's authors and an investigator at the Allen Institute for Brain Science in Seattle. But it's possible that many different combinations of genes involved in autism could lead to the same patches of disorganization in the layers of cortex.

Finding out whether that's the case will be difficult because there is a shortage of brains from children available to researchers. Parents of children who die — with and without autism — rarely agree to donate their child's brain to science.

Scientific and advocacy groups are trying to change that with a program that informs families about tissue donation and a website that encourages people with autism and their families to get involved in research projects.

Thursday, April 24, 2014

Upcoming Presentations by NESCA Director of Behavioral Services Jessica Minahan


April 23, 2014

We have been seriously remiss in not updating Jessica Minahan's calendar of speaking engagements. If you've never attended one of her talks or workshops, you are seriously missing out! Here are a couple that you and/or your advocates might want to attend:

April 30, 2014: Marshfield SEPAC, Marshfield, MA. Please click on the link below for complete details.
The Behavior Code: Effective Strategies for Students with Anxiety

May 1, 2014: Full-Day Training - Massachusetts Elementary School Principals’ Association (MESPA). Please click on the link below for complete details.
Rethinking Behavior Support: Effective Interventions for Students with Anxiety-Related and Oppositional Behavior

These talks are free and open to the public. Advance registration may be required.

About Jessica Minahan, M.Ed., BCBA

Jessica Minahan is co-author, with Psychiatrist Nancy Rappaport, of The Behavior Code: A Practical Guide to Understanding and Teaching the Most Challenging Students, published by Harvard Education Press.

She holds a B.S. in Intensive Special Education from Boston University, and a dual master’s degree in Special Education and Elementary Education from Wheelock College. She has a certificate of graduate study (CGS) in teaching children with Autism from University of Albany, and received her BCBA training from Northeastern.

Her additional Massachusetts and other professional certifications include Teacher of Students with Special Needs (Pre-K through 9), Intensive Special Needs (All Levels), Professional Early Childhood (Pre-K through 3), Special Education Administration (All Levels, Initial), Crisis Prevention Intervention Trainer and Wilson Reading Level 1.

Since 2000, she has worked with students who exhibit highly challenging behavior in both their homes and schools. She specializes in creating behavioral intervention plans for students who demonstrate explosive and unsafe behavior. She also works with students with emotional and behavioral disturbances, anxiety disorders, high-functioning autism and Asperger’s Syndrome.

Is This Intervention Right for My Child with Dyslexia?

From Smart Kids with LD

By Sheryl Knapp, A/AOGPE
April 22, 2014

Your child is found eligible for special education services due to difficulties with reading and spelling—but how can you determine whether the interventions offered address her unique needs?

To answer that question, you must evaluate the proposed program as well as key factors that impact how it’s implemented. By following these guidelines, you can ensure that your child’s reading or spelling challenges will be addressed in ways likely to yield measurable improvements.

Program Considerations

An appropriate reading and/or spelling intervention is comprised of four critical instructional elements. It must be:
  • Systematic: Concepts are taught using a pre-established scope and sequence as opposed to following a more reactive, “guided reading” approach where mistakes are corrected as they occur.
  • Multisensory: Research shows that students learn best when information is presented in multiple ways—visually, auditorially and kinesthetically (e.g., via writing).
  • Research-based: Research-based literacy programs typically encompass five key elements: phonemic awareness (the ability to hear/manipulate sounds within words), phonics (associating letters with these sounds), fluency, vocabulary and comprehension.
The term “research-based” implies that the program’s effectiveness has been established through rigorous research that conforms to conventional standards and is verified through an impartial, peer-review process.

This, however, is not always the case, as publishers sometimes use the term without disclosing their financial interests in a program or revealing that the only research supporting their claims is their own.

Individualized: Instruction progresses at a pace consistent with the student’s unique abilities and challenges and is taught in a way that matches her learning style and interests. Whether this intervention needs to be one-on-one depends upon the child’s learning needs as well as the availability of a well-matched group.

Implementation Issues

In addition to ensuring that a program is appropriate, the selected services must be written in the Individualized Education Program (IEP) in a way that ensures adequate progress will be made. This involves the following factors:

The Plan. An IEP should clearly outline a child’s unique needs (Present Level of Performance), the services used to address each need, and the expected outcome as a result of them.

In order to determine whether these outcomes are achieved, it is critical that all goals and objectives be measurable (observable and objectively quantifiable). Objectives such as “Joey will improve his reading skills” or “Susie will increase her vocabulary” are not measurable.

Better choices are “Joey will read 60 words per minute,” or “Susie will define 10 new vocabulary words each week from her school text.”

Each objective should include: What the student will do (the behavior); the condition under which the behavior will occur; the criteria necessary for the performance to be considered acceptable. For example, “Min will solve double-digit addition problems (behavior) using a calculator (condition) with 95% accuracy (criteria).

Staff Qualifications. The greatest indicator of success of any systematic, multi-sensory, research-based program is the training and experience of the individual implementing it. Although numerous pre-packaged programs that encompass the critical elements are readily available, it is essential that the implementer be well-trained in using that specific program and understands the overall structure of language.

Monitoring Progress. Progress should be checked and charted at regular intervals (typically bi-weekly) using a quick, reliable and repeatable monitoring tool. This information can then be used to adjust the nature and intensity of the intervention to ensure that the student continues to make adequate gains.


Based on a presentation for Smart Kids with LD by Sheryl Knapp, A/AOGPE and Kathy Whitbread, Ph.D. Knapp is the founder and President of Literacy Advocates, providing literacy-related consulting services for students with learning disabilities. She has Associate Level certification with the Academy of Orton-Gillingham Practitioners and Educators.

Whitbread is an Associate Professor of Education at St. Joseph College, and Assistant Professor of Pediatrics at the University of Connecticut Health Center.

Related Smart Kids Links

Wednesday, April 23, 2014

Autism Twitter Chat Thursday, April 24th

From CDC
The Centers for Disease Control and Prevention

April 23, 2014

Join us in a Twitter Chat on Thursday, April 24th!

Thanks to everyone who attended CDC’s first ever Public Health Grand Rounds on autism spectrum disorder this past Tuesday.

To keep this important conversation going, please join us in a Twitter Chat on the public health approach to autism, hosted by NCBDDD Director, Dr. Coleen Boyle (@DrBoyleCDC), and the American Academy of Pediatrics (@AmerAcadPeds).

Join these leaders and other partners in a follow-up discussion on the important topics covered through Grand Rounds: autism research, surveillance, and early identification and screening.

The chat will take place on Thursday, April 24, from 1:00-2:00pm EST. Participate using hashtag #AutismPHGR.

When Parents Aren't Enough: External Advocacy in Special Education

From The Yale Law Journal

By Erin Phillips
Volume 117, No. 8 (June, 2008)

"Parents often lack the necessary knowledge about disability and educational options, and often have difficulty interfacing with school officials in special education proceedings. These gaps in knowledge and ability make it difficult for parents to advocate effectively for their children without external help..."

ABSTRACT: The Individuals with Disabilities Education Act (IDEA) has been celebrated for providing millions of disabled children with broader educational and life opportunities.

This Note seeks to improve the implementation of the IDEA by questioning one of its key assumptions: that parents possess the tools to advocate for their children in special education matters.

This Note argues that many parents need assistance to achieve optimal outcomes for their children because of the complexity of the disabilities involved and the formal rules of the system itself. Policy options are considered in the hope that local educational agencies will implement pilot programs to further explore the issue of external advocacy in special education.

Read the entire article (52-Page PDF) HERE.

What to Expect From an Evaluation

From Emotions to Advocacy
The Special Ed Survival Guide by Pam & Pete Wright

By Marianne S. Meyer, M.A.
Updated May 14, 2012


Want appropriate services and a good placement for your child?
  1. Before you can get appropriate services for your child, you must have an appropriate IEP;
  2. Before you can get an appropriate IEP, the Present Levels required by IDEA must be accurate, current and comprehensive;
  3. Before you can state your child's needs clearly in the Present Levels and know what the school should provide - you must have objective test data from evaluations.

A good evaluation for a learning disability is not as simple as "having your child tested". First, it requires preparation on your part.

You must choose an appropriate professional, provide a clear statement of your (or a teacher's) concerns, and produce records for review. You should be prepared to give a thorough and accurate prenatal, birth, motor, and medical background as well as details about speech/language development, social development, and family history.

Finally, you or one or more of the child's teachers may be asked to complete checklists that will profile your child's attentional style (and executive functioning).

This information will determine the nature and scope of the evaluation. The process is methodical, and cannot be rushed!

So plan ahead, allowing time to collect the necessary information and schedule appointments.

Choose a Professional Evaluator

A good evaluation will gain enough information to get a picture of the "whole" child. Choose a professional, usually a psychologist, with appropriate training and experience to make a skilled clinical judgment. It is essential that the evaluator have up-to-date knowledge of the LD field. This person should be able to explain the range of available services, from a short screening that suggests whether further testing is warranted, to a full educational evaluation that:

1.) determines your child's strengths and weaknesses;

2.) clearly interprets findings to you, and;

3.) makes specific recommendations that can be communicated to teachers and tutors.

[Note: IDA publishes a "Fact Sheet' on this topic, "Testing and Evaluation" that is available at www.interdys.org.]

School Information is Examined to Understand the Learning Context

Because learning occurs in a context, examining school records (report cards, group achievement test results, teacher comments, interventions tried, and work samples) is important.

Knowing which instructional approaches and materials are used in the curriculum can help sort out whether problems are due to lack of instruction or a poor match between your child and the curriculum.

In some cases classroom observations are also recommended.

Referral Question is Refined and "Targeted" Tests Administered

Based on background and school information, the reasons for the evaluation referral are clarified and refined. With age and grade appropriate test measures chosen, targeted testing begins. (There are a multitude of tests, but remember, more is not necessarily better!) If the question is probably dyslexia, for example, reading skills should be targeted along with frequently associated spelling and written composition skills.

The value of IQ testing in a LD determination has been controversial. However, based on converging research findings, it appears unlikely that federal legislation will continue to support the ability-achievement discrepancy criterion.

If there is a specific question (such as ruling out a significant mental handicap or significant "peaks and valleys" in a child's intellectual profile) or when a program or school entrance requires it, a complete intellectual assessment is desirable.

Answers the Question "Why is the difficulty occurring?"

Unfortunately, the "why" question is not routinely addressed, despite the increased availability of reliable, research-based measures. Knowing "why" sets the stage for appropriate, specific recommendations.

If your child is struggling with reading, for example, assessing skills that support reading acquisition, such as:

1.) phonological and phonemic awareness (hearing how sounds and sound patterns work in our language system and associating sounds with letters);

2.) fluency and automaticity (rapidly and easily recognizing letters, words and phrases);

3.) short term rote memory (remembering sequences of sounds heard) and;

4.) orthographic skills (representing the language sounds of language by written symbols)

-- allows the evaluator to determine where the reading process is breaking down.

Sometimes neuropsychological measures assessing memory, attention and visual-spatial-motor abilities are also helpful.

Results are Synthesized and a Clear Diagnosis Given

A good evaluation synthesizes the findings and gives a clear diagnosis with supporting evidence. It should state the extent of the problem as well as highlight competencies, and give a reasonable estimate of the outcome. Any emotional or social factors (either adverse or positive) also need to be addressed.

Focused, Prioritized Recommendations Made

The best recommendations for interventions are those that are focused, specific, and prioritized. While a child may have a variety of needs, yielding to the temptation to address everything at once results in "laundry lists" of recommendations. Student and teacher alike will experience greater success if two or three critical issues are successfully addressed first.

Recommended interventions should be those that are scientifically based and research validated. Be cautious of "quick-fixes" and trendy solutions.

In contrast to the emphasis on a few priority interventions, more numerous classroom/testing accommodation recommendations can be given.

Intervention Options Thoroughly Discussed

The evaluator should be familiar with local, regional, and national resources, including the names of trained, experienced tutors, and LD organizations, such as IDA.

If school services are an appropriate option, multiple considerations - the class size, type, and composition, curriculum, and services offered, qualifications and experience of teachers - need to be discussed.

Conclusion Provides Support and Hope

This discussion not complete without stressing the emotional component.

Having a child evaluated can be anxiety-provoking and exhausting - but often a relief as well - to both parents and child. A good evaluation should make parents feel "heard" and supported (especially when the diagnosis is more severe than expected), and should make the child feel his or her uniqueness is cherished.

Most of all, a good evaluation should provide hope - hope that there are resources to address the issue, that our knowledge about specific learning disabilities is improving daily, and that there is a community of parents and professionals ready and willing to provide support.

About the Author

Marianne S. Meyer, M.A., NCSP, is an instructor in the Section of Neuropsychology at Wake Forest University School of Medicine in North Carolina. A former school psychologist, she conducts clinical evaluations and is involved in the NICHD sponsored research on adult literacy as well as genetic and heritability factors, cross-linguistic comparisons and long-term outcome in dyslexia. She has contributed articles to Annals of Dyslexia and Perspectives and is a frequent speaker at IDA conferences.


Reprinted from the International Dyslexia Association quarterly newsletter Perspectives, Fall, 2003/Meyer.