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Monday, June 30, 2014

The ADHD Explosion: Myths, Medication, Money and Today’s Push for Performance

From NPR's WLRN-FM/Miami Herald News

By Bonnie Berman, Joseph Cooper & Paul Leary
June 4, 2014

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Listen to this story HERE (52:26).
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Topical Currents delves into one of the most controversial and misunderstood medical conditions of our time: ADHD. With skyrocketing rates of diagnosis and medication treatment for attention-deficit/hyperactivity disorder, alarming questions are being raised and our healthcare system is being impacted by the high costs. We visit with Dr.’s Stephen Hinshaw and Richard Sheffler. They’ve written The ADHD Explosion: Myths, Medication, Money and Today's Push for Performance.

4 ways to make college more accessible for special needs students

From eCampus News

By Andria Casey
June 20, 2014

There may be a shortage of apps targeting post-secondary special education, but you can still take steps to facilitate a smooth transition for your students.

In recent years, the awareness of special needs in education has grown steadily. Yet, most of the focus is placed on K-12 resources. As special needs students move on to higher education, the amount of support and resources seems to dwindle.

Nearly 350 special needs apps can be found when searching in the iTunes store. The large majority of these apps feature fun cartoons and basic concepts – perfect for the K-12 audience, but not the higher education audience. I was impressed with the recent
eCampus News article on assistive technology apps, which listed several apps that held value beyond the doors of high school.

While early support and intervention are critical, students with special needs also need help transitioning into the higher education space – just as does any student entering college. Once they’ve outgrown K-12 tools, what is available to facilitate learning?

As an educator, you can meet unique learning needs to facilitate success in college.
Atomic Learning, a leader in online professional learning, provides several series that focus on assistive technology and accessible education.

1.) Understand the disability.

Take the time to educate yourself about the challenges presented by the condition. Meet with the student ahead of time to determine how you can best support him or her. Work with your student services program to match the student with the appropriate outlets on campus.

2.) Make the classroom and its materials accessible.

The necessary tools will vary based on disability, but your student must be able to access the proper materials. If a student frequently misses class for health reasons, make sure lectures are available via video or audio recording. Match the student with a note taker, interpreter or signer to ensure lectures are communicated effectively. It’s increasingly easier to provide accessible course materials, including closed-captioned videos and alternate image text.

3.) Create an individualized learning environment.

Realize that each student, whether disabled or non-disabled, learns differently. Remember that some students are visual learners, while others who are visually impaired need special tools just to read text. Be prepared to customize your lessons to the student’s individual needs.

4.) Provide continued support.

A student’s needs don’t end once he or she leaves the classroom. Some students may need extra guidance with task organization and time management. Establish strong study skills, and offer testing help if needed. Most important, be willing to provide individual attention and tutoring, whether through extended office hours or the assistance of a teaching aide.

There may be a shortage of apps targeting post-secondary special education, but you can still take steps to facilitate a smooth transition for your students. Do you have any tips for supporting special needs on campus? What resources do you use in your classroom?


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Andria Casey is an Account Manager at C. Blohm & Associates, a public relations firm specializing in the education and special needs industries. Connect on Twitter @andriaclaire and @CBlohmAssoc.

Kids with Autism Often Have Parents with Similar Traits

From Washington University in St. Louis
via Futurity

By Jim Dryden
June 27, 2014

Parents of children with autism are more likely to have autistic traits themselves, according to new research.

It might seem uncommon that couples with high levels of autistic
traits would get together and have children, but when one parent
scores high for autistic traits, it's likely the other parent will, too,
John Constantino says.

Past studies have shown that the siblings of children with autism also tended to have more autistic traits than the siblings of kids without autism. But this study is the first to connect significant numbers of autistic traits in parents.

“When there was a child with autism in the family, both parents more often scored in the top 20 percent of the adult population on a survey we use to measure the presence of autistic traits,” says John N. Constantino, professor of psychiatry and pediatrics at Washington University in St. Louis.

“It could be that a mother or a father is just a little bit repetitive or slightly overfocused on details,” Constantino says.

“We can measure the presence of those traits with our questionnaire, but higher scores don’t mean a parent has problems. In fact, there may be advantages to having some of those traits. The problem comes when those traits are so intense that they begin to impair a person’s ability to function.”


Too Large a ‘Helping’

Just as an adequate amount of mashed potatoes and gravy won’t take over a dinner plate—too much may end up spilling over into everything else on the plate. With autistic traits, too large a “helping” of particular traits can have a negative influence on a child’s behavior and social skills. Traits related to autism tend to be natural variations in social skills, Constantino says.


For the study, published in JAMA Psychiatry, researchers analyzed data from 256 children with diagnoses of autism and almost 1,400 children who did not have the disorder. Data from more than 1,200 mothers and 1,600 fathers of the children also were included in the analysis.

All of the subjects were part of the Nurses’ Health Study II, which has been gathering health information from more than 116,000 nurses since 1989.

Kristen Lyall colleagues at the Harvard School of Public Health used the Social Responsiveness Scale (SRS) to measure the presence of autistic traits. People who score less than 59 on the SRS are considered normal and healthy.


All in the Family

When both parents had mild elevations in SRS scores, the study indicated that they were 85 percent more likely than parents without elevated scores to have a child with an autism spectrum disorder. If only one parent’s SRS score was high, the likelihood of having a child with autism spectrum disorder increased by 53 percent. And even among children without autism diagnoses, elevated parent scores correlated with higher SRS scores in their children.

It might seem uncommon that couples with high levels of autistic traits would get together and have children, but when one parent scores high for autistic traits, it’s likely the other parent will, too, Constantino says.

“It turns out that people tend to select one another on the basis of many of the same traits that the SRS measures. Likes attract. If one person has a high score, he or she is more likely to partner with another person who also scores high.”

That’s likely to raise the chances that their offspring will have elevated scores.

“When both parents have scores at or above the top 20 percent, the child’s score is 20 to 30 points higher than when neither parent has an elevated SRS score,” Constantino says.

To better understand how the genetic risks for autism are transmitted from parents to children—and what might protect some individuals in a family from experiencing clinical impairment even when they inherit the same risk factors—Constantino and his colleagues are conducting studies involving molecular, neuroimaging and behavioral methods to trace autism susceptibility across generations in families.


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Researchers from University of California, Davis, contributed to the research. The National Cancer Institute and the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health, Autism Speaks, and the US Army Medical Research and Material Command provided funding.

Sunday, June 29, 2014

Dealing with Invisible Learning Disabilities


June 29, 2014


Clear?

Why Kids Care More about Achievement than Helping Others

From The Atlantic

By Jessica Lahey
June 25, 2014

A new study suggests that parents and teachers may be sending kids the wrong message.

A new study from Harvard University reveals that the message parents mean to send children about the value of empathy is being drowned out by the message we actually send: that we value achievement and happiness above all else.

The Making Caring Common project at Harvard’s Graduate School of Education surveyed 10,000 middle and high school students about what was more important to them, “achieving at a high level, happiness, or caring for others.” Almost 80 percent of students ranked achievement or happiness over caring for others. Only 20 percent of students identified caring for others as their top priority.

In the study, The Children We Mean to Raise: The Real Messages Adults are Sending About Values,” the authors point to a “rhetoric/reality gap,” an incongruity between what adults tell children they should value and the messages we grown-ups actually send through our behavior.

We may pay lip service to character education and empathy, but our children report hearing a very different message. Simply talking about compassion is not enough.

While 96 percent of parents say they want to raise ethical, caring children, and cite the development of moral character as “very important, if not essential,” 80 percent of the youths surveyed reported that their parents “are more concerned about achievement or happiness than caring for others.”

Approximately the same percentage reported that their teachers prioritize student achievement over caring. Surveyed students were three times as likely to agree as disagree with the statement “My parents are prouder if I get good grades in my class than if I’m a caring community member in class and school.”


Study author Richard Weissbourd says he was surprised by the results. As he wrote to me in an email:

"We were especially surprised and troubled to find how many youth value aspects of achievement over caring and fairness. We were also surprised by what seems to be a clear gap between what parents say they're prioritizing and the messages that youth are picking up day to day. We need to take a hard look at the messages we're sending to children about success versus concern for others and think about how we can send different messages."

Child psychologist and author Michele Borba told me the study was “incredibly important,” a “wake up call to parents, a clear indication that we need to reprioritize our parenting agendas ASAP. The science reveals the irony of the situation: happier and more successful kids care about others, they are able to relate, be concerned, and respect differences, and a lack of empathy makes kidsless successful, and less happy.”

Her email went on to explain,

"Studies show that kids’ ability to feel for others affects their health,wealth and authentic happiness as well as their emotional, social, cognitive development and performance. Empathy activates conscience and moral reasoning, improves happiness, curbs bullying and aggression, enhances kindness and peer inclusiveness, reduces prejudice and racism, promotes heroism and moral courage and boosts relationship satisfaction. Empathy is a key ingredient of resilience, the foundation to trust, the benchmark of humanity, and core to everything that makes a society civilized."

Children are not the only ones hearing parents’ implicit message. Educators, too, understand that parents value achievement and happiness over empathy and caring. When the study’s authors surveyed educators as part of their research, this is what they found:

"The great majority of teachers, administrators, and school staff did not see parents as prioritizing caring in child-raising. About 80% of school adults viewed parents as prioritizing their children’s achievement above caring and a similar percentage viewed parents as prioritizing happiness over caring."

If there is any good news to be found in this report, it is that while we may value other things above empathy, we still care about it, and want our children to value it. While only 22 percent of the students surveyed ranked caring first on their list of priorities, almost half of them students ranked caring second, and 45 percent thought their parents would rank caring second as well.

The authors offer parents and teachers a number of guidelines. First, they suggest that parents give their children opportunities to practice being good, empathetic people. “Daily repetition—whether it’s helping a friend with homework, pitching in around the house, having a classroom job, or working on a project on homelessness” can give kids the skills they need to make caring a part of their day-to-day lives.

The study also recommends that parents teach their children to see the world from multiple perspectives and help them find positive ways to channel negative feelings such as envy, shame, and anger.

As the report shows, simply talking about compassion is not enough. Children are perceptive creatures, fully capable of discerning the true meanings in the blank spaces between well-intentioned words.

If parents really want to let their kids know that they value caring and empathy, the authors suggest, they must make a real effort to help their children learn to care about other people—even when it’s hard, even when it does not make them happy, and yes, even when it is at odds with their personal success.

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JESSICA LAHEY is a correspondent for The Atlantic and a former English, Latin, and writing teacher. She writes about education and parenting for The New York Times and on her site,Coming of Age in the Middle, and is the author of the forthcoming book The Gift of Failure: How the Best Parents Learn to Let Go So Their Children Can Succeed.

"How Should I Say It?" A Workshop for Neuroexceptional Couples

From AANE.org
The Asperger's Association of New England

June 26, 2014

A Two-Day Workshop Presented by

AANE and Grace Myhill, in partnership with Carol Feldman Bass, are pleased to offer an action-based, weekend workshop on how to better communicate with your partner.
Communication in any type of relationship can be challenging.

Now add to that the difficulties and frustrations when each member of a couple appears to have very different:
  • Speaking styles
  • Auditory processing abilities
  • Perspectives
  • Tolerance for conflict
  • Capacity for problem solving 
This workshop is designed to address the communication issues in relationships in which one member of the couple identifies as having Asperger's or a related autism spectrum profile and the other member does not.

Methods

Using a combination of action methods, group members will experience what it might feel like to be in each other's shoes and to learn an alternative approach to communication from that perspective.


When:    10:00 am - 4:00pm Saturday, July 19, 2014 and
                     9:00am - 3:00pm Sunday, July 20, 2014

Where:  Asperger's Association of New England
                    51 Water St., Suite 206
                    Watertown, MA 02472

Cost:       $750 per couple for both days. This includes light breakfast on Saturday and Sunday. This group will be limited to 15 couples, and is subject to cancellation if not enough participants register.

For more information, please contact Grace Myhill by email to gmyhill@gmail.com, or call 617-504-3116.

About the Speakers

Grace Myhill is the Coordinator of Spouses/Partners Services at the Asperger's Association of New England, where she leads groups for neurodiverse couples and for spouses/partners of individuals with Asperger's Syndrome. She has a private psychotherapy practice in which she specializes in working with neurodiverse couples or spouses/ partners of individuals with Aspergers. Her offices are in Watertown and Wellesley, MA, and in Baltimore, MD. She is also available for consultations by phone or video conference.

Ms. Myhill co-authored the article Asperger Marriage: Viewing Partnerships through a Different Lens with Dania Jekel. She is a 2004 graduate of the BU School of Social Work and a 1983 graduate of Vassar College.

Carol Feldman-Bass is the founder of Social Dynamix, an interactive learning program that combines social pragmatics and theatre to help individuals overcome social anxiety and acquire the spontaneity that is critical to establishing warm social relationships. For the past several years she has worked collaboratively with AANE to develop and run groups entitled, "The Dating Game" and "Relationship Game" for men and women who have Asperger's Syndrome and wish to acquire better social skills.

She is a graduate of Vassar College and Boston University School of Law and is currently at Lesley University working on her Master's in Counseling and Drama Therapy. Ms. Bass is also a certified Life Coach and is in her last year of a six-year training program at the Hudson Valley Institute of Psychodrama. She has been a working actress and improvisor in New England for more than 12 years.

Saturday, June 28, 2014

Pediatricians Call for Parents to Read Aloud to Their Children Every Day

From The HuffPost Parents Blog

By Catherine Pearson
June 24, 2014

If your child's next visit to the pediatrician includes a clear emphasis on reading, don't be surprised. 

On Tuesday, the American Academy of Pediatrics issued its first-ever policy statement focused on literacy promotion, calling for pediatricians to advise all parents about the many benefits of reading aloud, which promotes literacy and social-emotional skills.

"Reading with young children is a joyful way to build strong and healthy parent-child relationships and stimulate early language development," Dr. Pamela High, a pediatrician and professor at Brown University's Alpert Medical School, told The Huffington Post.

"The benefits are so compelling that encouraging reading at check-ups has become an essential part of care," added High, who was the lead author on the new statement.


A new statement from the American Academy of Pediatrics promotes
reading aloud to children. | Roberto Westbrook via Getty Images 

Numerous studies have measured the importance of reading aloud. However, one 2007 estimate found that fewer than half of young children in the United States are read to on a daily basis. Every year, more than one in three children in the United States starts kindergarten without the language skills required to learn how to read, according to data cited in the new statement.

The problem is particularly pronounced among children born into low-income families, who hear fewer words in early childhood and know fewer words by age 3, the authors write.

But many high-income families also fall short: The 2011 to 2012 National Survey of Children's Health found that in families with incomes at or below the federal poverty threshold, only 34 percent of children age 5 and under were read to daily. In families whose incomes were 400 percent of the poverty threshold, however, 60 percent of those children were read to daily.

"Even in higher-income families, many children do not experience the enhanced engagement and language-rich parent-child interactions, including book handling, print exposure and other early literacy experiences afforded by daily shared reading," the authors write. "All families face issues of limited time, limited parental understanding of the key role of reading aloud and competition for the child's interest and attention from other sources of entertainment, such as electronic media."

The new statement, aimed at the American Academy of Pediatrics' 62,000 members, urges pediatricians to talk to parents about how critical reading aloud is for children's brain development and literacy skills, and to provide books during visits for all low-income, high-risk children.

It also argues that literacy promotion should be included in pediatric residency programs, and it calls for federal and state funding to help manage the costs of making age-appropriate books available during routine care.

As for parents, High said they should remember the so-called "5 Rs" of early education: reading with their children daily as part of a set routine; rhyming, singing and cuddling with them throughout the day; establishing routines and regular times for meals and sleep; rewarding them for their efforts and successes to boost self-esteem; and developing relationships that are reciprocal and nurturing. Parents should make daily reading a part of their regular, set routine.

"Pediatricians are taking a stand to spread the news more widely that early shared reading is both fun and ultimately very rewarding," she said.

Inside the Adult ADHD Brain: Differences between Adults Who Have Recovered, and Those Who Have Not

From MIT
via ScienceDaily

June 10, 2014

Summary: Brain scans differentiate adults who have recovered from childhood ADHD and those whose difficulties linger, research shows. In the first study to compare patterns of brain activity in adults who recovered from childhood ADHD and those who did not, neuroscientists have discovered key differences in a brain communication network that is active when the brain is at rest and not focused on a particular task.

The findings offer evidence of a biological basis for adult ADHD and should help to validate the criteria used to diagnose the disorder.

At left, the brains of adults who had ADHD as children but no longer have it
show synchronous activity between the posterior cingulate cortex
(the larger red region) and the medial prefrontal cortex (smaller red region).
At right, the brains of adults who continue to experience ADHD
do not show this synchronous activity.

About 11 percent of school-age children in the United States have been diagnosed with attention deficit hyperactivity disorder (ADHD). While many of these children eventually "outgrow" the disorder, some carry their difficulties into adulthood: About 10 million American adults are currently diagnosed with ADHD.

In the first study to compare patterns of brain activity in adults who recovered from childhood ADHD and those who did not, MIT neuroscientists have discovered key differences in a brain communication network that is active when the brain is at wakeful rest and not focused on a particular task. The findings offer evidence of a biological basis for adult ADHD and should help to validate the criteria used to diagnose the disorder, according to the researchers.

Diagnoses of adult ADHD have risen dramatically in the past several years, with symptoms similar to those of childhood ADHD: a general inability to focus, reflected in difficulty completing tasks, listening to instructions, or remembering details.

"The psychiatric guidelines for whether a person's ADHD is persistent or remitted are based on lots of clinical studies and impressions. This new study suggests that there is a real biological boundary between those two sets of patients," says MIT's John Gabrieli, the Grover M. Hermann Professor of Health Sciences and Technology, professor of brain and cognitive sciences, and an author of the study, which appears in the June 10 issue of the journal Brain.


This study focused on 35 adults who were diagnosed with ADHD as children; 13 of them still have the disorder, while the rest have recovered. "This sample really gave us a unique opportunity to ask questions about whether or not the brain basis of ADHD is similar in the remitted-ADHD and persistent-ADHD cohorts," says Aaron Mattfeld, a postdoc at MIT's McGovern Institute for Brain Research and the paper's lead author.

The researchers used a technique called resting-state functional magnetic resonance imaging (fMRI) to study what the brain is doing when a person is not engaged in any particular activity. These patterns reveal which parts of the brain communicate with each other during this type of wakeful rest.

"It's a different way of using functional brain imaging to investigate brain networks," says Susan Whitfield-Gabrieli, a research scientist at the McGovern Institute and the senior author of the paper. "Here we have subjects just lying in the scanner. This method reveals the intrinsic functional architecture of the human brain without invoking any specific task."

In people without ADHD, when the mind is unfocused, there is a distinctive synchrony of activity in brain regions known as the default mode network. Previous studies have shown that in children and adults with ADHD, two major hubs of this network -- the posterior cingulate cortex and the medial prefrontal cortex -- no longer synchronize.

In the new study, the MIT team showed for the first time that in adults who had been diagnosed with ADHD as children but no longer have it, this normal synchrony pattern is restored. "Their brains now look like those of people who never had ADHD," Mattfeld says.

"This finding is quite intriguing," says Francisco Xavier Castellanos, a professor of child and adolescent psychiatry at New York University who was not involved in the research. "If it can be confirmed, this pattern could become a target for potential modification to help patients learn to compensate for the disorder without changing their genetic makeup."

Lingering Problems

However, in another measure of brain synchrony, the researchers found much more similarity between both groups of ADHD patients.

In people without ADHD, when the default mode network is active, another network, called the task positive network, is suppressed. When the brain is performing tasks that require focus, the task positive network takes over and suppresses the default mode network. If this reciprocal relationship degrades, the ability to focus declines.

Both groups of adult ADHD patients, including those who had recovered, showed patterns of simultaneous activation of both networks. This is thought to be a sign of impairment in executive function -- the management of cognitive tasks -- that is separate from ADHD, but occurs in about half of ADHD patients. All of the ADHD patients in this study performed poorly on tests of executive function. "Once you have executive function problems, they seem to hang in there," says Gabrieli, who is a member of the McGovern Institute.

The researchers now plan to investigate how ADHD medications influence the brain's default mode network, in hopes that this might allow them to predict which drugs will work best for individual patients. Currently, about 60 percent of patients respond well to the first drug they receive.

"It's unknown what's different about the other 40 percent or so who don't respond very much," Gabrieli says. "We're pretty excited about the possibility that some brain measurement would tell us which child or adult is most likely to benefit from a treatment."

Journal Reference


Aaron T. Mattfeld, John D.e. Gabrieli, Joseph Biederman, Thomas Spencer, Ariel Brown, Amelia Kotte, Elana Kagan, and Susan Whitfield-Gabrieli. Brain differences between persistent and remitted attention deficit hyperactivity disorder. Brain, June 2014 DOI: 10.1093/brain/awu137

Friday, June 27, 2014

Is "Sensory Processing Disorder" a Real Medical Condition?

From The New Republic

By Jenny Jarvie
June 24, 2014

Thousands of parents say it is. The psychiatric establishment disagrees.

Jacob Trigg was barely three years old when his mother, Pamela, began to notice he was not quite like other boys. While his classmates ran amok in preschool, he would find a quiet corner and sit by himself. At the age of four, he begged to leave restaurants, refused to play sports, and showed little interest in making friends. It took several adults to hold him down for a haircut.

For most toddlers, tantrums and clumsiness are just a part of life, something they grow out of. Yet a burgeoning number of parents, like Pamela Trigg, are reporting that their children exhibit baffling, intense behaviors. Some overreact, recoiling from loud noises or refusing to wear itchy clothes. Others underreact, showing little reaction to pain or crashing their bodies into walls.

In the last decade, tens of thousands of children have been labeled with sensory processing disorder, a once-unheard of condition which advocates liken to a neurological “traffic jam” that prevents the brain from handling external stimuli and making sense of certain sounds, sights, smells, tastes, and textures. The Sensory Processing Disorder Foundation, a 35-year-old research and advocacy group based in Denver, claims SPD disrupts the everyday lives of more than four million Americans.

Many families find such behavior so debilitating that they are hiring occupational therapists to teach them how to play with their kids or to brush their skin with soft-bristled brushes. Across the country, clinicians charge as much as $200 an hour to encourage children with sensory problems to spin in slings and hammocks, play with shaving foam, and blow bubbles through a hose.

Sensory Processing Disorder Foundation
 
For some, this is sheer quackery. There is still little consensus within the medical community on whether SPD is an actual disorder, let alone whether many popular treatments work. Last year, the SPD Foundation failed in its decade-long campaign to convince the American Psychiatric Association to include SPD in the fifth edition of Diagnostic and Statistical Manual of Mental Disorders.

In 2012, the American Academy of Pediatrics claimed it is unclear whether children with sensory problems have a distinct disorder, or whether their challenges are linked with other disorders such as autism, ADHD and anxiety. It urged doctors to caution parents that the effectiveness of sensory integration treatments are “limited and inconclusive.”

With so little recognition for SPD from the medical establishment, parents struggle to get insurance companies to pay for therapies (many therapists coach parents to get around the problem by claiming other diagnoses on insurance forms). Scientists also find it a challenge to win research funding.

“It’s a Catch-22,” said Dr. Lucy Jane Miller, founder and director of the SPD Foundation. “It’s hard to fund the studies because SPD is not a real diagnosis, yet it can’t be a real diagnosis without more studies.”

Part of the challenge is that sensory problems tend to overlap with other disorders—Jacob Trigg has also been diagnosed with anxiety and ADD—and they can also occur in otherwise normal toddlers, too. On the one hand, advocates for SPD complain it often goes underdiagnosed, swallowed by other conditions because it is not understood by the medical community. Kids are frequently undertreated, even inappropriately medicated, due to a lack of information and training, they say.

On the other hand, skeptics worry that families who pour all their efforts into popular but unproven therapies risk wasting time and money on what could turn out to be regular growing pains, or delaying a diagnosis of some other disorder, which requires entirely different treatment.

For families, the stakes are high. Without intervention, parents are warned their children may underperform at school and develop secondary—and potentially lifelong—behavioral problems such as anxiety, aggression, or depression. The SPD Foundation even cites Adam Lanza, the Sandy Hook Elementary School shooter who was identified as having SPD as a young boy, as an example of what can go wrong if sensory problems go untreated.

“Without treatment, children who have little problems turn into older children who have bigger problems, who turn into adolescents who have huge problems and adults who are failures,” said Dr. Miller. “If you don’t get adequate treatment when you’re young, it snowballs.”

In refusing to recognize SPD as an official disorder, is the medical community effectively blocking children with sensory problems from potentially successful treatments? Or are therapists themselves rushing to diagnose and treat SPD—even in the absence of a clear diagnostic method, or firm evidence that popular therapies turn sensory problems around?

The concept of sensory processing disorder—or sensory integration dysfunction, as it is also known—was pioneered by a California occupational therapist and psychologist, A. Jean Ayres, who argued in a 1972 book, Sensory Integration and Learning Disorders, that some children had trouble handling and processing sensory information in their environment, and that such deficits led to wider developmental and learning problems. In the early 1990s, awareness of SPD spread after Carol Stock Kranowitz, a preschool teacher, published a book about it called The Out-of-Sync Child.

Even without acknowledgement from pediatricians and psychologists, SPD has gained ground—if not as a formal medical diagnosis, then as a loose popular identity. In the last decade, many parents have built informal DIY networks, getting together on online forums and listservs to chronicle their struggles (“Venting… That’s all”), appeal for advice (“HELP MY SON WILL NOT GET DRESSED!!!”), and swap tips (“I found a way to make showers less evil”).

On one forum, a British mother complains her five-year-old throws tantrums any time he has to wear footwear. Parents on either side of the Atlantic pitch in, suggesting canvas shoes, soft-cotton socks and socks without seams. A few days later, the mother returns to proclaim the ordeal over—a store clerk solved the problem by inserting an inner sole—only to admit the next day that the solution was short lived. “Back to the drawing board,” she writes.

A month later, she logs in to report that her occupational therapist recommended a daily ritual of rubbing her son’s feet across the carpet, jumping 20 times, soaking his feet in cold water, and “squishing” them before putting his socks and shoes on: “Boy, I don't think I have time to do all this before school.”

While families exchange ideas, a whole new marketplace is opening up. Parents can invest in “sensory-friendly” products and attire, from weighted vests to chewable jewelry. They can fit their homes with sensory gyms (some parents have launched crowdfunding campaigns for home therapy equipment). They can send their children to schools that cater to students’ sensory intolerances and allow them to move around, take breaks and wear headphones. Public libraries host sensory storytimes, theaters stage quiet performances with modified lighting, museums conduct out-of-hours tours with cool-down rooms. Even hair salons are beginning to offer “sensory friendly” cuts.

As a wider range of everyday behavior described in medical and psychiatric terms, many are skeptical of labeling a wide swath of children with yet another disorder that scientists and doctors barely understand. Already, one in six children in the United States has been diagnosed with a developmental disability such as autism or ADHD, according to the Centers for Disease Control and Prevention. The agency estimates that more than 10,000 American toddlers have been medicated for ADHD, even though most experts agree that hyperactive and impulsive behavior are normal traits in young children.

“Our idea of normal is shrinking,” said Dr. William Carey, a pediatrician at the Children’s Hospital of Philadelphia. “If you’re shy, you have a social anxiety disorder. If you have a hot temper, you have intermittent explosive disorder. Too many variations of normal are being labeled as defects in the child when the problem often lies in the child’s environment.”

Certainly, it’s hard to imagine any parent scrolling through the SPD Foundation’s online checklist without worrying. After urging parents to talk to a doctor when “more than a few” symptoms are found, the list begins:
  • “My infant/toddler has problems eating.”
  • “My infant/toddler refused to go to anyone but me.”
  • “My infant/toddler has trouble falling asleep or staying asleep.”

With sensory problems so diverse—straddling a continuum from mild to severe—popular diagnoses often seem to fall short in distinguishing between normal developmental delays and extreme dysfunctional behavior. Many critics of SPD say there needs to be a more rigorous framework for diagnosis. Since Ayres came up with the concept of sensory integration deficits, researchers have developed several tools for evaluating sensory problems, yet there is still no commonly accepted method.

Some therapists use Ayres’s Sensory Integration and Praxis Tests, a battery of tests that assess visual, tactile, and kinesthetic perception and motor performance; others use some form of Sensory Profile, which relies on parent-reporting, standardized testing, and clinical observations.

Research also tends to blur normal and dysfunctional behavior. For example, one study is based on a questionnaire in which 16 percent of parents reported their 8-year-olds were “bothered by” at least four of 41 sensations, including sirens, concerts, cutting of fingernails, and clothing tags. Parents were not asked how bothered the children were—mildly irritated or severely distressed?—and there was no independent evaluation of the children’s responses.

On the basis of this study, some claim that one in six children suffer from SPD. “If you ask a bunch of children if they’re bothered by tags in shirts, a lot of hands will go up—very often these are isolated symptoms that aren’t disrupting their lives,” admitted Dr. Alice Carter, a psychology professor at the University of Massachusetts in Boston who led the study.

Yet such variation between mild and severe symptoms, she noted, also characterizes other mental health problems, such as anxiety and depression, which are recognized as disorders. “At what point do we say there’s sensory impairment that’s causing enough of a problem to warrant more attention?”

Some parents claim that their kids eventually “age out of” sensory problems—either because of therapy or because they eventually figure out coping mechanisms. And yet, advocates for SPD have long insisted the problem is neurological—the brains of those with sensory problems are different and cannot handle information correctly—and they have begun to concentrate their efforts on funding neurobiological research.

Last year, a small study by scientists at the University of California San Francisco found structural brain abnormalities in children whose parents reported sensory difficulties. Using advanced MRI imaging, they detected abnormal white matter in the back of the brain, the area that connects auditory, visual and tactile systems.

“There’s no question these children exist,” said John Foxe, a professor of pediatrics and neuroscience at the Albert Einstein College of Medicine in New York, who has examined the brain wave patterns of a small number of sensory-challenged children. His research, not yet published, has found that some otherwise normal children have difficulty combining sights, sounds, and touch as a whole experience, making everyday interactions overwhelming.

Still, Foxe noted that normal children with severe sensory problems, independent of other disorders, appear quite rare: His team struggled to find more than 18 such children to take part in his study. “Are they everywhere? I don't think so,” Foxe said, noting that he himself cut labels out of his clothes, but it had not appeared to impact his functionality.

To better understand the nature and extent of sensory problems, as well as the effectiveness of treatments, Foxe said there’s a need for extensive longitudinal studies that pick up more children at a younger age and track their development over time. “We’re barely scratching the surface now,” he said.

Even if there is a neurological difference in children with sensory problems, brain scans do not necessarily explain how interactions between genetics and environment may lead to SPD. “Understanding sensory processing is not as simple as saying, ‘There’s something different in the brain, therefore the child has this disorder,’” Dr. Miller said. “Instead, it’s more likely that a child has a pre-existing biological weakness and that the environment can exacerbate problems.”

For example: “Kids aren't outside riding their bikes. They’re inside playing games on iPads and computers. That could have a profound effect if the child has vulnerability already in their brain.”

It's a popular lament in America: We're overmedicating our kids. But treatment of SPD, unlike ADHD, does not involve drugs, rather a range of occupational and alternative therapies that seek to re-train the child’s sensory responses. Many clinicians offer play-based therapy in special gyms equipped with swings, slings, squeeze machines, and super-sized pillows. Some therapists use the Wilbarger Protocol to stimulate children’s limbs with soft brushes and gentle joint compressions every two hours for several days.

Other methods include listening therapy, in which a child hears specific sound frequencies and patterns on headphones, and craniosacral manipulation, which involves massaging the child’s cranium and spine.

Parents offer anecdotal support in favor of all of these techniques—and certainly, compared with attention deficit drugs such as Ritalin, such therapies seem harmless—but doctors note there is scant evidence that many of these treatments work. In the absence of standardized measures for assessing improvement over time, the American Academy of Pediatrics advises doctors to communicate with parents on the "limited data" and help families devise simple ways of monitoring treatment effects.

Even among those who advocate for SPD, there is considerable disagreement. Dr. Miller, who runs the STAR center in Denver, dismisses many therapies popularly associated with SPD—brushing, spinning, and wearing weighted vests—as quick fixes.

“A lot of it is myth and magic,” she said. “You can’t just throw fairy dust and make this problem go away… Why do people believe in them? I don't know. Because they want to believe in something?”

While Dr. Miller advocates an intensive approach that focuses on the child’s psychology and specific family goals, she admits there’s a need for larger, randomized trials that demonstrate the benefits of her own center’s treatments. The STAR center, which charges parents up to $3,000 for assessments and up to $300 for individual sessions, coaches parents on how to tune into their children’s feelings, develop positive relationships, and engage in more spontaneous play.

“Nobody does that anymore,” Dr. Miller said. “For children who are not vulnerable, that’s fine. But for these kids, play can set a platform for what social participation looks like. That’s the key… All this eye rolling, all the knee-jerk reactions—you don’t get that from parents.”

Yet if more parents are embracing questionable techniques, as Dr. Miller suggests, shouldn’t the onus be on doctors, therapists, and researchers to provide more evidence and identify successful treatments? Without a clear framework for diagnosing and treating children with severe sensory problems, many parents whose children are identified with SPD seem to risk lurching from one unproven therapy to the next.

Pamela Trigg, whose son Jacob has already gone through several intensive sessions at the STAR Center, has also spent years investing in weekly visits to an occupational therapist, brushing, and a weighted vest—all with limited success. This summer, family life unraveled as Jacob’s school routine came to an end, and Trigg spent the better part of a week struggling to get her son, now 8, to go to a summer camp on technology, a subject he picked himself based on his love of computers. “Four adults had to hold him down just to get him to stay,” she said. “It’s so hard to explain why an eight-year-old kid is so petrified of leaving his mother.”

This month, Trigg ordered anti-anxiety medication for Jacob—a step she had initially been loathe to take—and she also followed the advice of a friend and booked him for an assessment at a relatively new treatment center, Brain Highways, that claims to retrain the brain and recreate developmental milestones. Babies who spend most of their days sitting on their back in infant carriers, or young children who spend hours in front of television and computer screens, the theory goes, may have skipped vital stages in lower-brain development. The course coaches children—and even adults—to crawl and creep across the floor, like newborns, and adopt exercises they refer to as “lizards” and “swords.”

This may sound far-out—Trigg admits she doesn’t understand a whole lot about the program yet—but as Jacob approaches third grade, Trigg says she is open to just about any experiment. “I’m hopeful,” she said. “Any time you find a new therapy, you want to try it, and you want to make it work.”

Thursday, June 26, 2014

Why Autism Risk Rises with Mom’s Age: Study May Shed Light

From Autism Speaks Science News

June 4, 2014

Autism Speaks fellow studied children of older mothers; found evidence of environmental influences that may affect brain development.

Autism Speaks Weatherstone Fellow Esther Berko takes a sample
of cheek cells from a study participant. (The EEG cap is for
a separate study.) Photo by Ariel Bleicher.

New research may help explain why autism is more common among the children of older mothers. The study, in PLOS-Genetics, implicates an accumulation of changes in the mechanisms that control gene activity in the developing brain.

The lead researcher, Esther Berko of New York’s Einstein School of Medicine, pursued her research with the support of an Autism Speaks Weatherstone Predoctoral Fellowship. She did so in collaboration with John Greally, a pioneer in the field of epigenetics. Epigenetics refers to the mechanisms that control gene activity and how these mechanisms can be changed by environmental influences.

The role of epigenetics in autism is of great interest because, in most cases, genetic mutations alone only partially explain why an individual develops autism spectrum disorder (ASD). By “environmental influences,” researchers mean a broad range of factors including parental age, conditions in the womb and birth complications. These factors are of particular interest because some may be avoidable and greater understanding of their effects may lead to future treatments.

Parental Age and Autism

A large body of research has shown that autism is more common among children of older parents. But why?

With older fathers, studies have associated the increased risk to an age-related build-up of gene mutations in sperm-producing cells. But relatively little research has looked at the factors at play with older moms. Unlike men, who continue to produce sperm through life, women are born with a lifetime of egg cells.


Dr. Berko and her colleagues performed genetic and epigenetic analyses
on the sample cheek cells. Photo courtesy Albert Einstein School of Medicine.

The new study involved 47 children with autism and 48 typically developing children – all born to mothers age 35 or older. Unlike most previous autism studies, the participants included a significant number of minority children (Hispanic and African-American).

An Easily Obtained Stand-in for Brain Cells

Of particular interest to researchers, Dr. Berko examined an easily obtained “stand-in” for each child’s brain cells: a swab of cells from the inner cheek. These cells arise from the same stem cells that also form the brain during the earliest stages of embryonic development.

“This would mean that whatever abnormalities we found in the cheek cells of children with an ASD versus typically developed children should exist in their brain cells as well,” Dr. Greally says.

Genetic Versus Epigenetic Changes

Dr. Berko and her colleagues looked for genetic as well as epigenetic changes that might account for increased risk of autism in the children of older moms.

Since the eggs of older mothers are prone to having abnormal numbers of chromosomes, the researchers first analyzed the cells for chromosomal defects that might account for ASD. They found no such problems.

The researchers next examined the children’s cells for evidence of environmental influences on the epigenetic control of embryonic development. Berko and her colleagues carried out several types of genome-wide analyses looking for epigenomic differences that would suggest environmental influences at work.

In the cells from the children with autism, they detected epigenetic changes affecting two groups of genes. Both groups of genes are known to affect brain development and brain cell function and have been previously implicated in autism.

“Our findings suggest that, at least in some individuals with an ASD, the same pathways in the brain seem to hit by both mutations and epigenetic changes,” Dr. Greally says. “So the severity of someone’s ASD may depend on whether or not a gene mutation is accompanied by epigenetic alterations to related genes.”

Are environmental influences responsible for the epigenetic changes?

“We were able to eliminate some other possible causes of ASD such as chromosomal abnormalities, so our findings are consistent with that notion,” Dr. Greally says. “In the case of older mothers at risk for having children with ASD, one possible environmental influence might be the aging process itself, which could disturb epigenetic patterns in their eggs. But there are other possibilities as well. Although much more work is needed, our study reveals a plausible way that environmental influences—which we know are important in ASD—might be exerting their effects.”

Guidance for Future Research

“The role of advanced maternal and paternal age as risk factors for ASD has been replicated several times,” comments Alycia Halladay, Autism Speaks senior director for environmental and clinical sciences. “This study takes previous epidemiology studies a step further to understand the biological mechanisms and potential gene-environment interactions in risk factors for ASD. We need more research in this area, especially the role of epigenetics in the causes of ASD.”

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In addition to funding from Autism Speaks, the research received support from the Jonas Ehrlich Charitable Foundation. The investigators also thank Autism Speaks for its help in recruiting study participants.

Judge Upholds Policy Barring Unvaccinated Students During Illnesses

From The New York Times

By Benjamin Mueller
June 22, 2014

In a case weighing the government’s ability to require vaccination against the individual right to refuse it, a federal judge has upheld a New York City policy that bars unimmunized children from public school when another student has a vaccine-preventable disease.

Citing a 109-year-old Supreme Court ruling that gives states broad power in public health matters, Judge William F. Kuntz II of Federal District Court in Brooklyn ruled against three families who claimed that their right to free exercise of religion was violated when their children were kept from school, sometimes for a month at a time, because of the city’s immunization policies.

The Supreme Court, Judge Kuntz wrote in his ruling, has “strongly suggested that religious objectors are not constitutionally exempt from vaccinations.”

Dina Check, shown at her home on Staten Island, sued the city for
denying her daughter an exemption from vaccination laws.
CreditJoshua Bright for The New York Times

The lawyer for the plaintiffs, Patricia Finn, said she plans to appeal the decision, announced this month. On Thursday, Ms. Finn asked the district court to rehear the case.

Amid concerns by public health officials that some diseases are experiencing a resurgence in areas with low vaccination rates, the decision reinforces efforts by the city to balance a
strict vaccine mandate with limited exemptions for objectors. Pockets of vaccination refusal persist in the city, despite high levels of vaccination overall.

State law requires children to receive vaccinations before attending school, unless a parent can show religious reservations or a doctor can attest that vaccines will harm the child. Under state law, parents claiming religious exemptions do not have to prove their faith opposes vaccines, but they must provide a written explanation of a “genuine and sincere” religious objection, which school officials can accept or reject.

Some states also let parents claim a philosophical exemption, though New York does not. Some parents refuse to have their children vaccinated because of a belief that vaccines can cause autism, thoughno link has ever been proved.

Two of the families in the lawsuit who had received religious exemptions challenged the city’s policy on barring their children, saying it amounted to a violation of their First Amendment right to religious freedom and their 14th Amendment right to equal protection under the law, among other claims. Their children had been kept from school when other students had chickenpox, their suit said.

The third plaintiff, Dina Check, sued on somewhat different grounds, saying that the city had improperly denied her 7-year-old daughter a religious exemption. She said the city rejected her religious exemption after it had denied her a medical exemption, sowing doubts among administrators about the authenticity of her religious opposition. But Ms. Check said the request for a medical exemption had been mistakenly submitted by a school nurse without her consent.

After the school barred her daughter, Ms. Check home-schooled her and then moved her to a private school that accepted her daughter without the vaccinations. State vaccination requirements cover public and private schools, but in New York City, private schools have more autonomy in handling exemptions.

Ms. Check said she rejected vaccination after her daughter was “intoxicated” by a few shots during infancy, which she said caused an onslaught of food and milk allergies, rashes and infections. Combined with a religious revelation she had during the difficult pregnancy, she said, the experience turned her away from medicine. Now she uses holistic treatments.

“Disease is pestilence,” Ms. Check said, “and pestilence is from the devil. The devil is germs and disease, which is cancer and any of those things that can take you down. But if you trust in the Lord, these things cannot come near you.”

In turning down all three families, Judge Kuntz cited a 1905 Supreme Court ruling that upheld a $5 fine for a Massachusetts man who disobeyed an order to be vaccinated during a smallpox outbreak, a case that helped establish the government’s right to require immunizations as a matter of public health.

Ms. Finn, the families’ lawyer, said that case should not be relevant. “There’s no way that court anticipated that children would be subjected” to the vaccines they must get today, she said.

In New York, the statewide mean religious exemption rate rose over the last decade, from .23 percent in 2000 to .45 percent in 2011, a 2013 study in the medical journal Pediatrics said.

New York City schools granted 3,535 religious exemptions in 2012-13, according to data from the state’s Health Department. Though city schools, public and private, have an overall immunization rate around 97 percent, according to the department, 37 private schools were below 70 percent. Health experts believe that above a certain immunization rate, outbreaks are limited because a disease cannot spread to enough people during its incubation period to sustain itself, a phenomenon known as “herd immunity.”

For measles, which is highly contagious, that rate is believed to be 95 percent, according to Daniel Salmon, deputy director at the Institute for Vaccine Safety at the Johns Hopkins Bloomberg School of Public Health.

Though widespread vaccinations have practically eliminated diseases like measles and mumps from the United States, flare-ups have occurred. The 477 measles cases reported this year represent the worst year-to-date count since 1994, according to the Centers for Disease Control and Prevention.

Among the 25 people who contracted measles in New York City between February and April this year, two were school-age children unvaccinated because of parental refusal. When one of the children, who was being home-schooled, contracted the measles, city health officials barred that child’s sibling, who had a religious exemption, from attending school. The sibling eventually contracted measles as well. Health officials credited the decision to keep the second child out of school with stopping the spread of disease in that community.

Ohio, which granted more than three times as many religious and philosophical exemptions to kindergarten students last year as it did in 2000, is struggling to contain a measles outbreak that has recently spread to 339 Amish people who were largely unvaccinated, the state health department said.

Mr. Salmon said it can be difficult for states to balance an obligation to mandate vaccination with some leniency for families who have strong objections. Rules that force parents to articulate their beliefs and require public officials to educate them about the risks of exemption are states’ best defense against the spread of disease, he said.

Still, especially because parents who refuse vaccination tend to cluster geographically, it takes only a few unvaccinated children to start an outbreak, he said. At that point, even vaccinated children are at risk.

“Diseases have a way of finding our vulnerabilities,” Mr. Salmon said, “the kinks in our armor.”