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Tuesday, March 31, 2015

The Necessity of Respite for Caregivers

From the PPAL Blog
Parent/Professional Advocacy League

By Mimi Gonzalez-Barillas
March 30, 2015

While many people with mental health diagnoses are able to self-advocate, some are not. For those people, the burden falls on healthcare providers and caregivers who are already overworked and under-compensated for their efforts.



We need strong, caring advocates for adults and children like mine, who struggle with mental illness and need adequate mental health-related services for all who are in need of them.

Imagine life with a thirteen-year-old who throws daily tantrums like a two-year-old, has periods where he talks (even when alone) every waking moment, and that those waking moments are numerous because he cannot fall or stay asleep. He endured sexual abuse, witnessed and was the victim of physical abuse, and inherited genetically and was environmentally molded into his own mental illness.

I live this life, along with my husband. Our son, in our home for nearly three and a half years, is diagnosed with post-traumatic stress disorder (PTSD), oppositional defiant disorder (ODD), attention deficit hyperactive disorder (ADHD), reactive attachment disorder (RAD), traits of Asperger’s Syndrome, and mood disorder NOS (not otherwise specified) {because psychiatrists don’t want to label a child with bipolar disorder, which my child’s biological mother had, which I am convinced that he has}.


Ours was his 13th placement in his 5+ years in DCF custody.

A brilliant child who struggles in school because of his mood instability, he is currently in a substantially separate classroom for children with emotional and behavioral problems. Along with TAP (Total Achievement Program), this has been a godsend for helping him to learn social skills and appropriate ways to channel his anger toward others.


When other students’ antics cost him his privilege time, or other group members don’t follow the teacher’s rules, his ire comes out. Have no doubt, he feels completely justified in breaking rules or pulling shenanigans of his own, “but that’s different.”

Last summer, our son (5’6”, 165 pounds) became violently angry and shoved me. This could have ended in serious injury or death for me as we were at the top of our stairs. He was admitted the next day to a CBAT (community based acute treatment) facility. He was discharged after the first few days of school and immediately had trouble at school. After a few weeks, he became violent at school and was admitted to a different CBAT. The first CBAT would not readmit him, saying he just wasn’t trying to implement his coping skills.


The second CBAT did a much better job ascertaining his issues and treating him. They also worked to get him a partial hospitalization placement to ease him back into the routine of school work. He is now almost back to last year’s level of performance when he made honors each term.

Our biggest struggle is respite time for my husband and me to recoup and enjoy being a couple. We made a conscious decision to bring this child into our home, knowing his past and the struggles we would face (to the degree that it is possible to know before actually experiencing it). My family is out-of-state, and my husband’s family members are not well-suited to handle our son’s emotions. He needs to stay with people who have cared for children with mental and behavioral challenges.


We don’t have a large network of such people from whom to choose. We have re-established ties with a former foster family whose attempt to adopt our son did not work out, and most months they take him 1-2 nights per month. In our three and a half years with him, we have had maybe twenty-five nights “off.” If you are a parent yourself, you can probably relate to needing time alone with your spouse to reconnect.

Now, imagine that your child is also suffering from mental illness and the exponential effect that has on your downtime needs.

The Department of Mental Health provided respite for families like ours until fairly recently, but at this time cannot help. DMH also has sponsored camperships for children with mental health issues but I have been told this year that may not be possible due to budget cuts. I can tell you that my husband and I need our child to go to an appropriate, mental health-related camp equipped to handle him, for the well-being and continued integrity of our family.


Summers are difficult for our son due to having less structured time. Yet the local DMH director said that not even kids in the DMH caseload (which my son does not fall into because of the blessing/curse that he has MassHealth) may get campership help, much less “non DMH kids.” We adopted this child from state care and getting appropriate help for him through DMH has been an ongoing nightmare.

Citizens with mental health problems are not a constituency that is able to advocate for themselves. That burden falls on health care providers and caregivers who are already overworked and undercompensated for their efforts. We need caring advocates for adults and children like mine who struggle with mental illness and need mental health related services for those who cannot help themselves.


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About the author: Holly C. and her husband live on the South Shore with their son, six cats, and a bunny (all adopted). She works in the health care field in an administrative role. The blog is from a handout she distributed during the annual Legislative Breakfast on Mental Health on March 12, 2015.

Why Parents Need to Let Their Children Fail: Free Talk by Author Jessica Leahy Wednesday, April 15

From the Fay School

March 29, 2015

Jessica Lahey, a parenting and education expert, writes the bi-weekly column "The Parent-Teacher Conference" for The New York Times, and is a contributing writer for The Atlantic. Her new book, The Gift of Failure: How the Best Parents Learn to Let Go So Their Children Can Succeed, will be published in August.

What's the best way to motivate students to own their education and develop resilience?

Leahy offers advice for fostering intrinsic motivation and weaning kids off of extrinsic motivators such as short-term rewards, bribes, honors, coercion, and yes, even grades, while giving kids the support and encouragement they need to succeed.

She also will summarize current research on autonomy-supportive parenting, competence, rewards, praise, and failure.

When:   7:00pm Wednesday, April 15, 2015

Where: Fay's Harris Theater
                  (signs will be on campus directing visitors to the theater)

Parking: Please park at Fay's Primary School (25 Middle Road, Southborough)
                     or at Fay's Office of Advancement (31 Main Street, Southborough)

This event is free and open to the public. No registration is required to attend.

Questions? Please contact Nicole Casey at 508-490-8204 or ncasey@fayschool.org.

Monday, March 30, 2015

Omega-3 Supplements May Help Boys with ADHD

From LiveScience

By Rachael Rettner
March 19, 2015

Boys with attention-deficit/hyperactivity disorder (ADHD) may benefit slightly from omega-3 fatty acid supplements, a new study from the Netherlands suggests.

The study involved 80 boys ages 8 to 14, about half of them diagnosed with ADHD. They consumed either a margarine enriched with omega-3 fatty acids, or a regular margarine, every day for 16 weeks. (The enriched margarine contained 650mg of docosahexaenoic acid, or DHA, and 650mg of eicosapentaenoic acid, or EPA.)



At the end of the study, the boys who'd consumed the omega-3 supplement saw a reduction in their attention problems — as rated by their parents — compared with those who did not consume the supplement.

Improvements in attention were seen in both children with and without ADHD, but the effect was greatest in those with ADHD, according to the study.

Most boys in the study with ADHD were already taking stimulant medications in addition to the omega-3 fatty acids. The study "offers support that omega-3 supplementation may be an effective augmentation for pharmacological treatments of ADHD," the researchers, from the University Medical Center Utrecht, wrote in a paper published online today (March 19) in the journal Neuropsychopharmacology.

The study was funded by Unilever Research & Development. The company was involved in the conception and design of the study, and made the margarine used in the study.

Previous studies on the topic have been mixed, with some studies finding a link between omega-3 fatty acid supplementation and reduced ADHD symptoms, and other studies finding no effect. A large review study in 2011, which included about 700 children with ADHD, found those who took omega-3 fatty acid supplements had a small improvement in the severity of their ADHD symptoms.

Other studies have found that children with ADHD have lower levels of omgea-3 fatty acids in their blood, compared with kids who don't have the condition.

Although the new findings support the hypothesis that omega-3 fatty acids may be helpful for children with ADHD, "I wouldn't call it a definitive study," said Dr. Daniel Coury, chief of developmental/behavioral pediatrics at Nationwide Children's Hospital in Columbus, Ohio.

Coury noted that the new study was not able to get input from the children's teachers, who can provide an independent view of the child's behavior.

In addition, the effects of the omega-3 fatty acid supplement on the children's attention problems that was seen in the new study was not very large, Coury said. On the test of attention problems that the researchers used in the study, the highest score is 20 points and lower scores indicated fewer problems than higher scores.

For children with ADHD who consumed omega-3s, the average score improved from 9.1 to 7.7. For children without ADHD who took omega-3s, the average score improved from 2.5 to 2.4.

These small improvements in scores may not translate into a meaningful improvement in children's everyday lives, Coury said.

Because omega-3 fatty acids are relatively safe, taking them would "certainly would be worth a try, but I doubt we're going to see a dramatic improvement," Coury said.

Dr. Anthony Rostain, a child and adolescent psychiatrist at The Children's Hospital of Philadelphia, said that the new study "helps to confirm what we already know," from previous research, which is that supplementation with omega-3 fatty acids may have a small effect on ADHD symptoms.

And because Americans tend not to get enough omega-3 fatty acids in their diet, supplementation for children with ADHD would not be a bad idea, Rostain said.

"I think that it's a good idea to add omega-3s to the diet, with the clear explanation to the parents that this is not going to give you a powerful effect, like a stimulant would," Rostain said. "This might augment the effect of the medication."

Children in the study also had their brains scanned while they performed a task intended to measure attention. There was no difference between the kids in the supplement group and those in the placebo group in terms of their performance or their brain activity during the task, the study found.

The reason why omega-3 fatty acids may affect ADHD symptoms is not known, but it is thought to be important for brain cells.

"Omega-3s are an important building block of the brain. It is abundantly present in the brain's cell membranes, where it is thought to facilitate the transmission of neural signals," said study researcher Dienke Bos, of the University Medical Center Utrecht.

Bos said it's important for children with and without ADHD to consume enough omega-3 fatty acids. One way to do this, besides supplementation, would be to eat fatty fish once or twice a week, Bos said.

Omega-3 fatty acid supplements usually do not have harmful side effects, according to the National Center for Complementary and Integrative Health. But the supplements may extend the time it takes for a wound to stop bleeding, so people who take other drugs that affect bleeding time should discuss the use of omega-3 fatty acid supplements with a health care provider, the NCCIH says.

Should Autism Be Diagnosed in Infancy?

From Psychology Today's Blog
"Child in Mind"


By Claudia M Gold, M.D.
March 25, 2015 

New research suggests: while intervention is needed, the answer may be "no."

A fascinating and important study by Jonathan Green published in January of 2015 in the Lancet, and beautifully described in an article titled, The Social Network: How Everyday Interactions Shape Autism, shows that autism research is coming out from the shadows of the “refrigerator mother theory".

This theory, first identified by Leo Kanner in 1949 and popularized in subsequent decades by psychoanalyst Bruno Bettelheim, claimed that autism was due to lack of maternal warmth.

While this theory has been widely discredited, it led to a kind of backlash, where autism is understood and researched as a biological disorder that resides exclusively in the child. Many contemporary autism researchers pose the question, "How early can one determine if a child does or does not have autism?" analogous to the way one does or does not have diabetes or food allergies.

However, contemporary research at the interface of developmental psychology, neuroscience and genetics, showing how the brain changes in relationships, flies in the face of this formulation.

Given what we know about the plasticity of the brain, rather than framing the question as “Does he or does he not have autism?” a more appropriate question might be:

“How to we, in the face of biological vulnerabilities, hold parents through uncertainty to give a child the best opportunity to grow in to what D.W.Winnicott termed his “true self?”


As Green’s research beautifully demonstrates, holding uncertainty does not translate to “do nothing.” As the article about his study states,“An added benefit is that the treatment is easy for parents to do and doesn’t require a diagnosis.”

While this research is specifically about autism, it has relevance for any parent-infant pair that is struggling to connect. The essence of the intervention is a clinician who has a relationship with a parent, who offers space and time to listen to parent and child together. The following case from my behavioral pediatrics practice offers an example of an intervention similar to what Green offers in his research study.

Mary was convinced that her 3-month-old son, Liam, was autistic. She felt she couldn’t connect with him. Her oldest child, Jack, now 7, carried diagnoses of autism that had not been made until he was 4. Her middle child, Jane, had recently been diagnosed with anxiety. Mary was overwhelmed with fear that Liam would follow a similar path.

Mary told me that Liam was quiet from birth. He hardly even cried in the delivery room. Despite the doctor’s reassurances, Mary wondered from those first moments if there was something “wrong with him.” Then as the weeks went on not only was he quiet, but he seemed to her not to be connected. She would put her face close to his and try to engage him to look at her face and follow. But she was rarely successful. As the weeks went on her efforts intensified while her anxiety escalated.

With a full hour together, we sat on the floor and observed Liam together.

I noticed it right away. My initial attempts to engage him by talking to him and looking in to his face were met by a rather remote expression. He appeared to be looking past me, perhaps at the lights on the ceiling, but it wasn’t clear. I saw Mary’s rising alarm. Resisting a similar reaction in myself, I said, “Let’s give it time.”

Liam lay on a blanket on the floor, at first continuing his seemingly random scanning of the room. I spoke quietly to him, noticing how he was sticking out his tongue. I imitated his movements and gradually he began to engage. Mary noticed that he seemed to be responding to my mirroring of his expression. Then, we observed a remarkable transformation.

In the quiet calm of this space, so dramatically different from the normal chaos of his everyday life, he seemed to come out of his shell. It started with a smile, at first seemingly random, but then clearly in response to my smile.

Mary continued to speak with him in a soft voice, but rather than putting her face up close to him, she spoke in a more natural way as part of our conversation. Liam became increasingly animated. Mary and I noticed, with rising joy and relief, that not only was he fixing and following on his mother’s face, but he was cooing in a responsive conversation with her. He kicked his legs and moved his arms in an expression of increasing delight.

Mary is not a “bad mother.” Liam's challenges are not her "fault." She is parent overwhelmed by the stress of caring for three young children and her understandable anxiety about the future of her infant. The space and time to listen gave us opporunity to notice that the intensity of her attempts to engage him were having the opposite effect.

Relief flooded Mary, but alongside what threatened to be a paralyzing sense of guilt and fear. Had she caused him harm by missing his cues? But I pointed out how easy it had been for us to engage Liam. Clearly Mary had been doing something right.

Research has shown that even when parents miss these cues in 70% of interactions, as long as these “misses” are recognized and repaired, development moves forward in a healthy way.

When I saw them together a month later, Mary spoke joyfully of the fun the family was having with Liam, who had developed in to an engaged and happy baby. Now, taking a few minutes every day to have some quiet time with Liam, she fell deeper in love with him every day. She marveled at his complexity as a person at the tender age of three months.

This “disruption” led to new levels of love and intimacy between Mary and her son.

If an intervention similar to the one described in Green's study was available to all parent-baby pairs who are struggling, we might find that biological vulnerabilities, rather than leading to a diagnosis of autism, or some other disorder, can be transformed in to adaptive assets.

Sunday, March 29, 2015

The Social Network: How Everyday Interactions Shape Autism

From SFARI.org
The Simons Foundation Autism Research Initiative

By Nicholette Zeliadt
March 24, 2015 

Credit: Julia Yellow

One afternoon in October, 2012, a communication therapist from Manchester, U.K., visited the home of Laura and her three children. Laura sat down at a small white table in a dimly lit room to feed her 10-month-old daughter, Bethany, while the therapist set up a video camera to record the pair’s every movement. (Names of research participants have been changed to protect privacy.)

Bethany sat quietly in her high chair, nibbling on macaroni and cheese. She picked up a slimy noodle with her tiny fingers, looked up at Laura and thrust out her hand. “Oh, Mommy’s going to have some, yum,” Laura said. “Clever girl!”

Bethany beamed a toothy grin at her mother and let out a brief squeal of laughter, and then turned her head to peer out the window as a bus rumbled by. “Oh, you can hear the bus,” Laura said. “Can you say ‘bus?’”

“Bah!” Bethany exclaimed.

“Yeah, bus!” Laura said.

This ordinary domestic moment, immortalized in the video, is part of the first rigorous test of a longstanding idea: that the everyday interactions between caregiver and child can shape the course of autism (1).

The dynamic exchanges with a caregiver are a crucial part of any child’s development. As Bethany and her mother chatter away, responding to each other’s glances and comments, for example, the little girl is learning how to combine gestures and words to communicate her thoughts.

In a child with autism, however, this ‘social feedback loop’ might go awry.

Revealing recreation: An infant who doesn’t attend to her
parents as they play together gives the parents few opportunities
to engage. 
Credit: Birkbeck College, University of London

An infant who avoids making eye contact, pays little attention to faces and doesn’t respond to his or her name gives parents few opportunities to engage. The resulting lack of social interaction may reinforce the baby’s withdrawal, funneling into a negative feedback loop that intensifies mild symptoms into a full-blown disorder.

“It’s not the whole explanation, but it might contribute a bit to the unfolding trajectory,” says Jonathan Green, professor of child and adolescent psychiatry at the University of Manchester in the U.K.

It’s not yet clear whether Bethany has autism, but her older brother was diagnosed with the disorder in 2012. That makes her 20 times more likely than an average child to be diagnosed with it herself. The risk is still small: Only about one in every five so-called ‘baby sibs’ are diagnosed with autism by age 3 or 4. Still, even baby sibs who are not diagnosed often show autism-like signs at an early age.

Green’s team is tracking Bethany and 53 other baby sibs from infancy to document how autism unfolds — including what happens during those crucial months and years before a diagnosis is made.

“One of the misconceptions people have about autism is that autism is just in the child,” says Gordon Ramsay, director of the Spoken Communication Laboratory at the Marcus Autism Center in Atlanta. Ramsay is not involved in Green’s study, but is studying how parent-child interactions influence vocal development. “Autism disrupts the relationship between the child and the caregiver, and that plays out in many ways.”

If the idea that faulty parent-child interactions contribute to autism proves to be correct, it might point to a new way of preventing or treating the disorder — by teaching parents how to adapt and respond to their child’s peculiar way of interacting with the world.

Controversial Claim

The notion that a parent’s behavior may exacerbate autism at first seems like a replay of the infamous ‘refrigerator mother theory.’ This shameful episode in the history of psychiatry suggested that cold and uncaring mothers cause autism, and was soundly refuted in the 1980s, but the three decades of its existence cast a long shadow on the field of autism research.

Sound shift: A noninvasive technique called
electroencephalography measures brain
responses to speech sounds. Credit: Birkbeck
College, University of London

One unfortunate side effect of the theory has been that scientists — and the general public — are wary of any hypothesis that implicates parents in their children’s trajectory.

In the past few decades, research into autism’s origins has focused mostly on genetics. “The traditional view is that it’s very much a biological disorder, and it just unfolds in its own time and there’s nothing that the environment can do,” Green says.

But Green wasn’t satisfied that this view fully accounts for the way autism emerges. It was already clear from research with typically developing children that early interactions are essential for social-skill development and language acquisition — faculties often affected in children with autism.

In fact, in the mid-1970s, child psychologist Arnold Sameroff proposed the ‘transactional’ model of child development. This model posits simply that the relationship between infant and caregiver is shaped by reciprocal feedback. An infant’s sounds and gestures elicit responses from a parent, and those reactions, along with the environment, in turn shape the child’s future behaviors.
Green suspected that these cycles sometimes falter or even come to a halt in autism. To find out, he examined a group of 6- to 10-month-old infants who had a family history of the disorder, hypothesizing that the high-risk babies might interact with their caregivers differently than babies in the general population do.

He found that as the baby sibs played and interacted with their parents, they tended to be less lively than low-risk babies (2). The parents of the baby sibs were, in turn, less responsive to their infants’ subtle bids for attention and more intrusive in their attempts to engage — for example, touching their babies more frequently to try to elicit responses.

Other differences between the two groups emerged by the time the children were between 12 and 15 months old (3). Children with a family history of autism tended to not show interest in their parents and they smiled and laughed less than low-risk toddlers. The children who were later diagnosed with autism at age 3 were among the least attentive. In this preliminary study, only the infants’ behaviors, not parental reactions, tracked with later diagnosis.

Cracking Circuits

Around the same, other teams were making similar discoveries. Jana Iverson’s group at the University of Pittsburgh explored how mothers respond verbally to their baby-sib toddlers’ social gestures, such as pointing at or sharing a toy. The mothers’ behaviors were no different from those of mothers in the general population (4). However, the team found that these children tended to make fewer gestures overall than children in the general population, giving their mothers fewer opportunities to respond.

“Basically, parents have to work with what the child brings to the table,” says Iverson, professor of psychology at the university.

Attention analysis: Eye-tracking tasks assess how long a
child takes to shift his gaze from picture to picture.
Credit: 
Birkbeck College, University of London

In this way, a behavioral peculiarity that begins with the children ends up depriving them of guidance from their mothers. “They’re not getting the kind of rich linguistic input that would be really beneficial for them,” Iverson says.

Her observation was borne out by a much larger study last year that recorded an entire day’s worth of verbal sounds made by 183 children — 77 of whom have autism — and their adult caregivers (5). The children ranged from 8 months to 4 years of age. Here, too, children with autism made fewer sounds overall than did children without the disorder.

In this study, the caregivers’ patterns of responses to their children in each group also differed. Caregivers of children without autism responded more frequently to speech-related sounds, such as speaking or babbling, than to sounds unrelated to speech, such as grunting or laughing. By contrast, the caregivers of children with autism responded whether the child’s sounds were speech-related or not.

It may be that the parents of children with autism mistook non-speech sounds for speech, or just that children with autism make unusual sounds, says study leader Anne Warlaumont, assistant professor of cognitive and information sciences at the University of California, Merced.

In either case, the findings suggest that autism disrupts the feedback loop that supports speech development. Because they produce fewer sounds, children with autism go through fewer iterations of this loop.

Taken together, the three studies established that there is indeed something amiss in the exchanges between parents and children at risk of autism. But whether this can contribute to autism severity is a much bigger — and more controversial — question. “It’s kind of a hard thing to prove,” says Robert Schultz, director of the Center for Autism Research at the Children’s Hospital of Philadelphia.

The proof would require researchers to alter the behavior of the parents and document its effects on the child, or vice versa. “To assess causality, you need an experiment,” says Daniel Messinger, professor of psychology at the University of Miami in Florida.

Social Networks

In the loop: Jonathan Green says cycles of social feedback falter
when interacting with a child who has autism. Credit: J. Green

Green’s study is that experiment.

By changing the dynamic between parents and children at high risk of autism, Green says, his team is trying to change the trajectory of the children’s development.

When Bethany was between 9 and 14 months old, a therapist visited Laura’s home once every two weeks and recorded them engaging in ordinary activities such as mealtime or play. The therapist then analyzed each video, picking out segments to replay for Laura during the next visit.

The goal was to help Laura better recognize and interpret Bethany’s attempts to communicate, whether through gestures, glances, grunts or other sounds. The therapist pointed out moments when Laura did particularly well at noticing and responding to her daughter’s cues.

For instance, when Bethany turned to look at the bus, she was communicating the focus of her attention; by translating this gesture into words, Laura gave her daughter an opportunity to expand her vocabulary.

The therapist also helped Laura spot small signs she had missed — for example, that Bethany had lost interest in a particular toy or game, or that she had not yet finished playing with something Laura was bored with. “Parents don’t always notice these subtle things,” Laura says.

Laura also learned strategies she could use to respond to Bethany’s bids for attention, practicing them for at least 30 minutes a day to help Laura’s behaviors become habit. “It was loads of fun,” Laura says. “None of this study has been hard work.”

The intervention starts in infancy in the hopes of changing the feedback loops before they become fixed, says Teodora Gliga, a neuroscientist at Birkbeck College, University of London, who helps to assess the infants’ behaviors. “Once they become the usual way in which the parent and child interact, it becomes more difficult to modify them.”

Half of the families in the study are getting this intensive hands-on coaching, and the other half make up a control group. To make sure that they’re seeing an effect of change in the parent’s behavior, the researchers are careful to interact only with the parents.

In Green’s study, “Any effect on the baby comes through a change in the parental behavior,” he says. “There’s no other route through which the baby could be affected.”

The study is still underway, but early results, reported 21 January in Lancet Psychiatry, indicate that the intervention makes a difference for both parents and children. Parents who received the training became less controlling in their interactions, instead waiting for their child to make the first move.

What’s more, the children in those families became more attentive to and engaged with their parents. They also showed fewer autism-like behaviors when they were 14 months old, compared with children whose parents did not receive training.

It is not yet possible to determine whether the intervention in Green’s study prevents autism or lessens its symptoms because most of the children are still too young to be accurately diagnosed. Bethany turned 3 in January, and her mother says she showed no signs of autism at her last checkup at Green’s lab in February. “She’s incredibly bright,” Laura says. “She’s the most sociable, most interactive child.”

At the very least, the study’s results suggest that therapists can teach parents strategies to boost the social attention of a child who is biologically predisposed to autism.

“That is pretty exciting,” says Aubyn Stahmer, associate professor of psychiatry at the University of California, San Diego, who was not involved in the study. “What that means for them long-term, I don’t think we know yet, but certainly it suggests that very early intervention with kids who might be at risk is a good idea.”

An added benefit is that the treatment is easy for parents to do and doesn’t require a diagnosis. “The more that we work towards some type of intervention that’s non-stigmatizing, that becomes more normalized, then parents will be able to do it in the privacy of their own homes and maybe make a difference for their babies,” says Connie Kasari, professor of human development and psychology at the University of California, Los Angeles. Kasari was not involved in the study, but has led interventions in preschoolers with autism.

The study’s final evaluations will take place later this year. But already, Green sees these preliminary findings as support of his theory that parent-child interactions play a role in autism’s trajectory.

“I don’t want to say that one can ‘cure’ autism like this, that’s not true,” Green says. “But I hope we’ll be able to make a difference.”

References

1. Green J. et al. Lancet Psychiatry Epub ahead of print (2015) Abstract

2. Wan M.W. et al. Res. Dev. Disabil. 33, 924-932 (2012) PubMed

3. Wan M.W. et al. J. Child Psychol. Psychiatry 54, 763-771 (2013) PubMed

4. Leezenbaum N.B. et al. Autism 18, 694-703 (2013) PubMed

5. Warlaumont A.S. et al. Psychol. Sci. 25, 1314-1324 (2014) PubMed

Saturday, March 28, 2015

Air Pollutants During Pregnancy Can Damage Child’s Brain, Up Risk of Cognitive, Behavioral Problems

From ScienceBlog

March 25, 2015

Researchers at the Columbia University Center for Children’s Environmental Health (CCCEH) at the Mailman School of Public Health and colleagues at USC have found a powerful relationship between prenatal exposure to air pollutants known as PAH (polycyclic aromatic hydrocarbons) and changes in the child’s brain structure and cognitive and behavioral problems.

Results appear in the journal JAMA Psychiatry.



PAH are ubiquitous in the environment from emissions from motor vehicles, oil and coal burning for home heating and power generation, tobacco smoke, and other combustion sources. (More on PAH and ways to limit exposure can be found on the CCCEH website.)

The study was conducted in a subset of CCCEH’s ongoing urban birth cohort study in New York City, which is following over 600 mothers and children from pregnancy into the children’s adolescent years. For a period during pregnancy, the mothers, all nonsmokers, carried personal backpacks containing filters which provided researchers with a sample of the air that the mothers were breathing. The filters were then analyzed for levels of PAH.


The Columbia researchers, led by Frederica Perera, Ph.D., Dr.PH, director of CCCEH, with Virginia Rauh, Sc.D. and colleagues previously reported that prenatal exposure to airborne PAH during gestation was associated with development delay by age 3, reduced verbal IQ at age 5, and symptoms of anxiety and depression at age 7.

At 7 to 9 years of age, Magnetic Resonance Imaging (MRI) scans and behavioral and cognitive tests were completed in 40 children from the cohort, under the direction of Bradley Peterson, M.D. and Dr. Rauh.

“This is the largest MRI study to date of how air pollutants, specifically PAH, affect the developing mind; our findings suggest that PAH are contributors to ADHD and other behavioral problems due to the pollutants’ disruptive effects on early brain development,” says Dr. Peterson, formerly at Columbia and now director of the Institute for the Developing Mind at Children’s Hospital Los Angeles, as well as professor of Pediatrics and Psychiatry at Keck School of Medicine of the University of Southern California.

The researchers documented reductions in nearly the entire white matter surface of the brain’s left hemisphere in children exposed to high levels of PAH—loss they found to be associated with slower processing of information during intelligence testing and more severe behavioral problems, including attention deficit hyperactivity disorder (ADHD) and aggression, in a dose-response fashion.


Postnatal PAH exposure—measured at age 5—was found to contribute to additional disturbances in development of white matter in the dorsal prefrontal region of the brain, which is associated with concentration, reasoning, judgment, and problem-solving ability.

Peterson explained that the morphological features associated with ADHD symptoms in this community sample differed from those previously reported in youth with the disorder, suggesting that exposure to high levels of PAH may produce a specific subtype of ADHD.

“Taken together with prior research by ourselves and others, these findings on the impact on brain development of prenatal exposure to these ubiquitous air pollutants have important implications for public health and prevention,” says Dr. Perera.

“MRI analysis is being completed on the entire cohort at ages 8-12 to confirm these results,” says Dr. Rauh, professor of Population and Family Health at the Mailman School. “The potentially irreversible nature of the damage lends some urgency to the findings.”

Authors of the paper are Bradley S. Peterson, Ravi Bansal, and Giancarlo Nati from the University of Southern California; and Virginia A. Rauh, Zachary Toth, Kirwan Walsh, Rachel Miller, David Semanek, and Frederica Perera from Columbia University Medical Center.

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This study was supported by the National Institute of Environmental Health Sciences (grants 5P01ES09600, P50ES015905, 5R01ES08977). This publication was also made possible by a grant from the U.S. Environmental Protection Agency (grants R827027, RD832141, RD834509, 8260901, RD832096, and RR00645), and grants from the National Institute of Mental Health (MH068318 and K02-74677).

Civil Rights Complaints to U.S. Department of Education Reach a Record High

From The Washington Post

By Lyndsey Layton
March 18, 2015

Straining under a record number of civil rights complaints, the U.S. Department of Education wants to hire 200 more investigators to expand its civil rights division by 30 percent.

Attorneys and investigators in the civil rights office have seen their workloads double since 2007, and the number of unresolved cases mushroom, as complaints have poured in from around the country about students from kindergarten through college facing discrimination on the basis of race, sex and disabilities.

“Some of this is about the community believing that we’re here and we’re in business and we’re prepared to do the work,” said Catherine E. Lhamon, the department’s secretary for civil rights. Some of the increase, she said, was due to guidance her agency has issued, reminding the public as well as schools and universities of various protections under federal law and how to report illegalities.

Complaints of discrimination to the department have soared from 6,364 in fiscal 2009 to a record of 9,989 in the most recent fiscal year. Lhamon expects another record to be set when the current fiscal year ends in September. It is a sign that “we have the trust of the national community bringing to us their deepest hurts and asking for resolution,” she said.

The agency does not open an investigation into every complaint; some are quickly dismissed because they fall outside of the jurisdiction of the office, Lhamon said. She could not say what percentage of cases are dismissed but noted that even when a complaint is discarded, it is still time consuming because an investigator must make a determination.

In its budget proposal for next year, the Department of Education is seeking $131 million for its Office for Civil Rights, an increase of $30.7 million, so it can hire an additional 200 lawyers and investigators. That would be in addition to its current staff of 554 employees.

Lhamon said that without the additional employees, the current staff will continue to strain under growing caseloads and it will take longer to resolve complaints. The backlog of cases that have been pending for longer than 180 days has doubled during the past five years from 315 to 630.

“I have a very real concern about our ability to do the work the way we want to do it, and the way students who rely on us want it done, if we cannot get the resources we need to handle the caseload,” Lhamon said.


She said there was no single category of grievance that accounted for the rise in complaints. But a breakdown of agency statistics show that the category of sex discrimination has grown from 391 in 2010 to 2,354 in 2014.

Discrimination based on disabilities make up the largest category, or 39 percent.

Sex discrimination comprised 24 percent of total complaints. Lhamon said two individuals were responsible for filing more than 1,700 of those allegations of sex discrimination. She declined to identify them, citing confidentiality requirements.

Agency officials and outside observers point to a key action by the Obama administration that probably triggered the increase in sex discrimination complaints. In 2011, the Office for Civil Rights issued guidance to that said sexual harassment of students, including acts of sexual violence, is a form of sex discrimination prohibited by Title IX of the Education Amendments of 1972. Up until that point, Title IX was commonly understood to ensure equal opportunity for girls and women in athletics and other educational programs and activities.

The guidance was part of an effort to make colleges and universities take campus sexual assault more seriously, Lhamon said. And after it was issued, complaints under Title IX soared.

Critics say the federal guidance was confusing, and that’s one factor behind the rise in complaints.

“To a large extent, this crush of complaints is a problem of OCR’s own making,” said Robert Shibley, executive director of FIRE, a Philadelphia-based civil liberties group.


“There’s been a huge amount of confusion among colleges and administrators about how to handle these things. And that’s led to a lot of investigations being opened. I’m not saying that universities were handling sex assault complaints properly before — I doubt that they were. But increasing OCR’s staff by 30 percent would be the wrong way to go.”

Sen. Lamar Alexander (R-Tenn.), chairman of the Health, Education, Labor and Pension committee and a former Education Secretary, has been critical in the past of Lhamon and suggested that she has overstepped her role.

“Senator Alexander has raised his concerns with Ms. Lhamon about her expansion of authority through the use of guidance to impose requirements on universities without proper notice and comment,” an aide to Alexander said. “He will evaluate the merits of the budget request with those concerns in mind.”

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Lyndsey Layton has been covering national education since 2011, writing about everything from parent trigger laws to poverty’s impact on education to the shifting politics of school reform.

Friday, March 27, 2015

Just How Common Is ADHD, Really? A New Study May Have the Answer

From ADDitude Magazine

March 25, 2015

The rate of ADHD worldwide has been disputed for years. Now, researchers may have identified the benchmark rate of ADHD, to help medical professionals determine whether communities are being over-diagnosed or under-diagnosed.


For as long as ADHD has been recognized by the medical community, the rate at which it occurs in children has been disputed, ranging from as low as 3 percent to as high as 14 percent. The conflicting numbers confuse parents, doctors, and patients, who struggle to determine if the condition is over-diagnosed — and over-medicated — or under-diagnosed.

A new study published in Pediatrics claims to have identified a benchmark estimate for the worldwide rate of ADHD in children. The study’s authors analyzed the data from 175 studies from around the world, conducted over 36 years, to reach their overall estimate: approximately 7.2 percent of children worldwide have ADHD.

By using this rate as a benchmark, the authors say, medical professionals can begin to determine if over- or under-diagnosis of ADHD has occurred in their community. Though a majority of the studies were done in Europe and North America, the total number of studies analyzed was spread evenly enough around the world that the researchers are confident in their conclusion.

Since the Diagnostic and Statistical Manual of Mental Disorders (DSM) has been revised several times over the years, the researchers also looked at whether the rate of ADHD diagnosis had changed along with the DSM. Since the DSM-IV has an updated (and perhaps — as some critics argue — looser) definition of ADHD, researchers expected to see a significant increase in diagnoses as the DSM-IV was widely used.

However, no statistically significant difference was seen between the DSM-III and the DSM-IV criteria, researchers said.

The 7.2 percent estimate is lower than the most recent data from the U.S. Center for Disease Control and Prevention (CDC). It claims that 11 percent of school-aged children have ADHD. However, since this study looked at a worldwide population — not just the United States — it’s possible that the jump in U.S. diagnoses may be related to other contributing factors, researchers said.

The study, while comprehensive, does have some concerns. Most of the individual studies (74 percent) looked only at school populations, possibly excluding children who were homeschooled or otherwise outside the school population.

In addition, the individual studies were primarily focused on specific communities or regions, which limits the ability of researchers to use them to form generalities about the global population.

Despite the concerns, however, the researchers believe the study to be a major step forward in eliminating ADHD stigma and helping those who are affected get the treatment they need.

“Media reports of high rates of diagnosis may cause suspicion regarding the diagnosis overall," said Rae Thomas, Ph.D., the lead researcher on the study. But “an accurate diagnosis is arguably the single most important thing a clinician can do for a patient."

These new estimates, he concludes, may give clinicians more accurate tools to use when searching for a diagnosis.

No Child Left Behind: What Standardized Test Scores Reveal about its Legacy

From The Washington Post Blog
"The Answer Sheet"

By Valerie Strauss
March 10, 2015

NOTE: With Congress now attempting to rewrite the No Child Left Behind law (the current version of the 1965 Elementary and Secondary School Act), it’s a good time to look at what NCLB accomplished and did not accomplish. Here’s one attempt to answer that question, and the post below is another, this one looking entirely at standardized test scores and how “achievement gaps” fared during the NCLB era.

This seems only fair, since modern school reformers have made standardized test scores the chief metric of student achievement and school effectiveness.

Since data is so important to school reformers today, here’s a look at some, by Monty Neill, executive director of FairTest, explains in this post. FairTest, or the National Center for Fair and Open Testing, is dedicated to eliminating abuse and misuse of standardized tests.


PISA (Program for International Student Assessment) Test
Results Show Declines in Reading, Math and Science from 2002-2012

By Monty Neill

No Child Left Behind (NCLB) was signed into law in 2002, the latest version of the long-standing Elementary and Secondary Education Act (ESEA). Its provisions, such as testing grades 3-8 annually in reading and math and punitive sanctions, took effect over the next several years. The law is more than seven years overdue for reauthorization by Congress. This year, both the House and Senate are showing strong interest in voting for a new version.

NCLB provided that the National Assessment of Educational Progress (NAEP) should be the primary means for evaluating the success of NCLB. (NAEP was long referred to as “the nation’s report card” because it was the only measure of student achievement given periodically to a sampling of students around the nation.) We can also consider evidence such as scores on the SAT and ACT college admissions exams and on the international PISA exams.

Here are key findings, comparing the rate of progress pre- and post NCLB for NAEP and recent trends on SAT and ACT tests:
  • The rate of progress on NAEP at grades 4 and 8 was generally faster in the decade before NCLB took effect than since. That is a consistent trend both overall and for individual demographic groups, including blacks, English Language Learners (ELLs) and students with disabilities.
  • Score gaps in 2012 were no narrower and often wider than they were in 1998 and 1990.
  • The slowdown in math was pronounced, especially at grade 4.
  • In many cases, the rate of gain slowed even more after 2007.
  • Score gains slowed after NCLB for English language learners, while score gaps increased between ELLs and non-ELLs.
  • In three of four grades/tests, scores for students with disabilities flattened or declined, while gaps with whites remained unchanged or widened.
  • Scores for high school students have stagnated. NAEP scores were highest for blacks, and gaps the narrowest, in 1988. Hispanic scores and gaps have stagnated since NCLB.
  • SAT scores declined from 2006 to 2014 for all demographic groups except Asians.
  • ACT scores have been flat since 2010 for all demographic groups.
  • PISA scores have declined from 2002 to 20132.

NCLB’s failure to even raise scores on other standardized exams should be considered in light of widespread evidence of curriculum narrowing and extensive teaching to the test. Other serious problems, such as pushing low-scorers out of school and widespread cheating scandals, are also part of the steep price paid for NCLB’s testing fixation.

The documents and graphs available HERE (by scrolling down) present the evidence in detail.

Thursday, March 26, 2015

Woburn SEPAC's 9th Annual College Fair for Students with Learning Differences - Wednesday, April 1st

From the Woburn SEPAC



March 25, 2015

The Woburn SEPAC's 9th Annual College Fair for Students with Learning Differences will be held next Wednesday, April 1st at Woburn Memorial High School from 5:30 - 8:00pm. At least a dozen colleges and post-high school programs are expected, including Landmark College, UMass Boston, ITT Tech, Johnson & Wales, Middlesex Community College, Curry College and more.

Also, this year, there will be small discussion groups for families, also involving people knowledgeable about helping students be successful in college.

There will be three tables of small group discussions. Each will run three times: 5:30, 6:30, and 7:30pm:
  • "What Colleges Look For" - hosted by Woburn HS Guidance Counselor
  • "College Life" - hosted by Woburn's Special Education Director and one or more college students who had IEPs or 504s in high school.

When:   5:30-8:00pm Wednesday, April 1, 2015
                   5:30, 6:30 and 7:30 for small groups
                   6:00 - 8:00pm to meet with college reps

Where: Woburn Memorial High School
                   88 Montvale Avenue
                   Woburn, MA 01801

Any questions? Please email the Woburn SEPAC at wps.SEPAC@gmail.com.

Unlocking Emily’s World: Cracking the Code of Silence in Children with Autism Who Barely Speak

From Boston University Research News

March 19, 2015


Emily Browne is laughing, and nobody really knows why. The 14-year-old with a broad face and a mop of curly brown hair has autism. She drifts through her backyard in Boston’s Dorchester neighborhood, either staring into the distance or eyeballing a visitor chatting with her dad, Brendan, and her 15-year-old sister, Jennifer, on the nearby patio.

That’s where the laughter started—a conversational chuckle from somebody on the patio that Emily answered with a rollicking, high-pitched guffaw. Then another, and another, and another.

Emily is growing up, her father says. She is learning new words in her
classroom at Joseph Lee School in Dorchester.

Emily can’t join the conversation. She is among the 30 percent of children with autism who never learn to speak more than a few words—those considered “nonverbal” or “minimally verbal.” Emily was diagnosed with autism at two, but Brendan and his wife, Jeannie, knew something was wrong well before then. “There was no babbling. She didn’t play with anything. You could be standing beside her and call her name, and she wouldn’t look at you,” says her dad. “Emily was in her own little world.”

“We were worried about Emily from pretty much her 12-month checkup….and we had talked with the doctor about the fact that she didn’t make any sounds. She didn’t really pay attention to anybody, which seemed a little unusual.”

But why? What is it about the brains of “minimally verbal” kids like Emily that short circuits the connections between them and everyone else? And can it be overcome? That’s the research mission of Boston University’s new Center for Autism Research Excellence, where Emily is a study subject.

Partly because of the expanding parameters of what is considered autism, the number of American children diagnosed with autism spectrum disorder has shot up in recent years, from one in 155 children in 1992 to one in 68 in 2014, according to the Centers for Disease Control and Prevention. And Helen Tager-Flusberg, a BU College of Arts & Sciences professor of psychology who has studied language acquisition and autism for three decades and heads the Autism Center, says minimally verbal children are among the most “seriously understudied” of that growing population.

Helen Tager-Flusberg, a BU College of Arts & Sciences
professor of psychology, is the director of the Center for
Autism Research Excellence and a leading expert on
children with autism who are minimally verbal.

Backed by a five-year, $10 million grant from the National Institutes of Health awarded in late 2012, her team includes researchers and clinicians from Massachusetts General Hospital, Harvard Medical School, Beth Israel Deaconess Medical Center, Northeastern University, and Albert Einstein College of Medicine in New York City. The researchers are focusing on the areas of the brain used for understanding speech, the motor areas activated to produce speech, and the connections between the two.

They’ll combine functional magnetic resonance imaging (fMRI), electroencephalography (EEG), and neural models of how brains understand and make speech. The models were developed at BU by Barbara Shinn-Cunningham, a professor of biomedical engineering in the College of Engineering, and Frank Guenther, a professor of speech, language, and hearing sciences at BU’s Sargent College of Health & Rehabilitation Sciences. They’ll also run the first clinical trials of a novel therapy using music and drumming to help minimally verbal children acquire spoken language. 

Ultimately, Tager-Flusberg and her colleagues hope to crack the code of silence in the brains of minimally verbal children and give them back their own voices. Getting these kids to utter complete sentences and fully participate in conversation is years away. For now, the goal is to teach words and phrases in a way that can rewire the brain for speech and allow more traditional speech therapy to take hold.

“Imagine if you were stuck in a place where you could not express anything and people were not understanding you,” says Tager-Flusberg, who is also a professor of anatomy and neurobiology and of pediatrics on Boston University’s Medical Campus. “Can you imagine how distressing and frustrating that would be?”

On a hot, muggy morning in late August, Emily’s dad escorts her into the Autism Center on Cummington Mall for a couple hours of tests. It’s part of a sound-processing study comparing minimally verbal adolescents with high-functioning autistic adolescents who can speak, as well as normal adolescents and adults.


The investigation is painstaking, because every study must be adapted for subjects who not only don’t speak but may also be prone to easy distraction, extreme anxiety, aggressive outbursts, and even running away. “[Minimally verbal children] do tend to understand more than they can speak,” says Tager-Flusberg. “But they won’t necessarily demonstrate in any situation that they are following what you are saying.”

“The study at BU especially was interesting to us because it focused on the kind of autism that Emily has….I know autistic children can behave a certain way—they can be antisocial and so forth—but no one seemed to be addressing the fact that some of these kids can’t communicate.”

That’s obvious in Emily’s first task, a vocabulary test. Seated before a computer, she watches as pictures of everyday items pop up on the screen, such as a toothbrush, a shirt, a car, and a shoe. When a computer-generated voice names one of these objects, Emily’s job is to tap the correct picture. Emily’s earlier pilot testing of this study showed that she understands more than 100 words. But today, she’s just not interested.

Between short flurries of correct answers, Emily weaves her head, slumps in her chair, or flaps her elbows as the computer voice drones on—car…car…car and then umbrella…umbrella…umbrella. When one of the researchers tries to get Emily back on task, she simply taps the same spot on the screen over and over. Finally, she gives the screen a hard smack.

The next session is smoother. Emily is given a kind of IQ test in which she quickly and (mostly) correctly matches shapes and colors, identifies patterns, and points out single items within increasingly complicated pictures of animals playing in the park, kids at a picnic, or cluttered yard sales.

Emily’s First Words

Emily is minimally verbal, not nonverbal. “Words do come out of her,” her dad explains. She’ll say “car” when she wants to go for a ride or “home” when she’s out somewhere and has had enough. Sometimes she communicates with a combination of sounds and signs or gestures, because she has trouble saying words with multiple syllables. For instance, when she needs a “bathroom,” her version sounds like, “ba ba um,” but she combines it with a closed hand tilting 90 degrees—pantomiming a toilet flush.

“That’s a handy one,” her dad says. “She uses it to get out of things. When she’s someplace she doesn’t want to be, she’ll ask to go to the bathroom five or six times.”

The first word Emily ever said was “apple” when she was four years old. “We were going through the supermarket, and she grabbed an apple. Said it, and ate it. It was amazing to me,” her dad recalls.

The final item on the morning agenda is an EEG study, in which Emily must wear a net of moist electrodes fitted over her head while she listens to a series of beeps in a small, soundproof booth. The researchers have tried EEG with Emily twice before in pilot testing. The first time, she tolerated the electrode net. The second time, she refused. This time, with her dad to comfort her and a rewarding snack of gummi bears, Emily dons the neural net without protest.

The point of this study is to see how well Emily’s brain distinguishes differences in sound—a key to understanding speech. For instance, normally developing children learn very early, well before they can speak, to separate out somebody talking from the birds chirping outside the window or an airplane overhead. They also learn to pay attention to deviations in speech that matter—the word “cat” versus “cap”—and to ignore those that don’t—cat is cat whether mommy or daddy says it.

“The brain filters out what’s important based on what it learns,” says Shinn-Cunningham. Some of this sound filtering is automatic, what brain researchers call “subcortical.” The rest is more complicated, a top-down process of organizing sounds and focusing the brain’s limited attention and processing power on what’s important.

EEG measures electrical fields generated by neuron activity in different parts of the brain. “Novel sounds should elicit a larger-than-normal brain response, and that should register on the EEG signal,” Shinn-Cunningham explains. There are 128 tiny EEG sensors surrounding Emily’s head and upper neck. Each sensor is represented as a line jogging along on the computer monitor outside the darkened booth where Emily sits with her dad holding her hand, watching a silent version of her favorite movie, Shrek.

Barbara Shinn-Cunningham, a professor of biomedical
engineering at the College of Engineering, has
collaborated with Frank Guenther, a professor of speech,
language and hearing sciences at BU’s Sargent College
of Health & Rehabilitation Sciences, to develop neural
models of how brains understand and make speech that
will help researchers learn more about children like Emily.

Today’s experiment is focused on the automatic end of sound-processing. A constant stream of beeps in one pitch is occasionally interrupted by a higher-pitched beep. How will Emily’s brain respond? Most of the time, the 128 EEG lines are tightly packed as they move across the screen. However, muscle movements generate large, visible peaks and troughs in the signals when Emily blinks or lolls her head from side to side. Once, just after a gummi bear break, several large, concentrated spikes show her chewing.

Shifts in attention are much more subtle, and the raw data will have to be processed before anything definitive can be said about Emily’s brain. The readout is time-coded with every beep, and the researchers will be particularly interested in the signals from the auditory areas in the brain’s temporal cortex, located behind the temples.

The beep test has six five-minute trials. But, after about twenty minutes, Emily is getting restless. It’s been a long morning. She starts scratching at the net of sensors in her hair. She’s frustrated that Shrek is silent. The EEG signals start to swing wildly. From inside the booth, stomping and moans of protest can be heard. When the booth’s door is opened at the end of the fourth trial, Emily’s eyes are red. She’s crying. Her father and the researchers try to cajole her into continuing.

“Just two more, Emmy,” her dad says. “Can you do two more for daddy?” And Emily answers with a word she can speak, quite loudly. “Noooo!” They call it a day. Emily will return to the center as the experiments move from beeps to words, and they can finish the last two trials then. All in all, it’s been a successful morning. “She did great,” says Tager-Flusberg.

In one room at the Autism Center, the researchers have rigged up a mock MRI, using a padded roller board that can slide into a cloth tunnel supported by those foam “noodles” kids use in swimming pools. It’s for helping the children in these studies learn what to expect in the real brain scanners operated by Massachusetts General Hospital.

“We’ve been finishing up our pilot projects for the scanning protocols and trimming them down to a time the kids will tolerate,” says Tager-Flusberg. “At first, the imaging folks at MGH said we need 40 to 50 minutes in the scanner for each subject. I said, ‘well that’s not happening. These kids won’t last that long.’”

The brain scans will be done with the adolescents as well as a group of younger minimally verbal kids, aged six to ten. The younger kids will also participate in an intervention study of a new therapy called Auditory-Motor Mapping Training (AMMT). The therapy was developed by Gottfried Schlaug, a neurologist who runs the Music and Neuroimaging Lab at Beth Israel Deaconess Medical Center.

In AMMT, a therapist guides a child through a series of words and phrases, sung in two pitches, while tapping on electronic, tonal drum pads.

“The idea, from a neuroscience perspective,” says Schlaug, is that, “maybe in autistic children’s brains one of the problems is that the regions that have to do with hearing don’t communicate with the regions that control oral motor activity.”

“The first time she ever actually said a word to me that I understood, we were in Stop & Shop….She reached into the bin and she picked up an apple and said ‘apple.’”

Many of the same brain areas activated when we move our hands and gesture are also activated when we speak. So, combining the word practice with drumming could help reconnect what Schlaug calls the “hearing and doing” regions of the brain. The initial results, from pilot work on a handful of children in 2009 and 2010, were promising. After five weeks of AMMT, kids who had never spoken before were able to say things like, “more please” and “coat on.” That’s when Schlaug sought out Tager-Flusberg.

Being Involved in Research

“I was aware of her importance in the field of autism research, and we wanted to discuss these findings with somebody who was an expert to ask if what we were seeing was believable,” says Schlaug, who is one of the principal investigators for the Autism Center. For the intervention study, the researchers aim to recruit about 80 minimally verbal children who will be randomized to either 25 sessions of AMMT or a similar therapy that differs in a few vital respects. (The control group subjects will have the option of getting AMMT after the study is complete.)

All the children will get brain scans before and after the therapy to see if improvements in vocal ability correspond with changes in the brain. “I would consider it a great success if we could turn on the brain’s ability to say words in an appropriate context,” says Schlaug. After that, he says, maybe AMMT could be scaled up to teach longer words and more complex phrases, or just get kids to a point where more traditional speech therapy could be effective.

Of course, as Tager-Flusberg stresses, the children classified as minimally verbal are, “an enormously variable population,” both in their facility with words and the other behavioral measures of the autism spectrum. The standards of improvement, and the hopes of the families joining in the center’s research, are no doubt just as varied.

Emily, for instance, goes to a public grade school in Boston. She’s in a special program for students with autism, and she has done well there. “She’s a relatively happy child,” her dad says. “She can count to 20. She knows her ABCs.” She can even spell a few words. Cat. Dog. Love.

Learning about Emily

Emily takes music classes at the local Boys & Girls Club, as well as dance and movement classes on Saturdays. Plus, the Brownes are a tight family. Brendan is an insurance underwriter, Jeannie teaches kindergarten part time, and Jennifer is a sophomore at the Boston Latin School. They’ve learned the fuller meanings of Emily’s limited vocabulary. When Emily says “pink,” for instance, she means yogurt, because her first yogurt was pink, strawberry, and delicious. When she says “orange,” that means quesadilla (her favorite food) because of the orange cheese they used at her school when she learned to make them.

Back on the patio in the Browne’s backyard, Emily’s dad explains how she used to run away a lot. She’d take off on him in the grocery store and flee across the parking lot, oblivious to traffic. Once caught, she’d be perfectly calm, even laughing. She also used to hit people for no particular reason. Both behaviors abated after Emily started taking the antipsychotic drug risperidone. Still, transitions are tough for her, and she’s entering her final year at the school she’s attended since she was three. Her parents are searching for the right high school.

“We still treat her like a child, but she’s a teenager now,” her dad says. “I don’t know what it’s going to be like when she’s 23. Will she be able to live independently? And this communication piece is really key to that, which is why we jumped at the research.”
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“They gave me a list of 100 words….quite a few of them I realized not only could she understand but she could say them….So I learned a lot more about Emily. We’re used to Emily the way she is, but Emily is growing and growing up.”

It’s nearing lunch time. Emily is making noises, slamming the lid of the grill and vocalizing a kind of “aaaahheeeeahhh,” drawing attention to herself.

Emily at home with her father, Brendan, and mother, Jeannie.

“Emmy, you want some lunch? Are you hungry?” her dad asks. 

“Orange?” Emily says. They go inside and get out the tortillas, salsa, and cheese. It’s time for the visitor to head home. “Goodbye, Emily,” he calls from the front door. “Bye,” she answers with a half wave.

“Very good!” her dad exclaims. “See, that was spontaneous!”