Intellectual Disability (Part 1)
Developmental challenges for individuals with
intellectual disability
By Barbara Tylenda, Ph.D., ABPP, Rowland P. Barrett, Ph.D., and Henry T. Sachs III, M.D.
Published in cooperation with Bradley Hospital Development is a complex process of
growth and change through which children
July 2014 acquire a variety of skills and abilities that
allow them to understand and function in
Vol. 30, No. 7 • ISSN 1058-1073 their world. The normal trajectory of devel-
Online ISSN 1556-7575 opment enables a child to progress from
complete dependency on others to near- or
Highlights… complete independency of his/her needs
and well-being. Although there is great vari-
In this month’s top lead, we have the ability in development, there are earlier and
first installment of a two-part article from later limits to what is considered “normal/
Drs. Barbara Tylenda, Rowland Barrett, typical” development. Statistically, children
and Henry Sachs III, on the developmental with intellectual disability (ID) are those who
challenges faced by individuals with develop at a rate significantly below average
intellectual disability. — the lowest 3% on the normal, bell-shaped
curve distribution — indicating why ID is
✦✦✦ called a “developmental disability.”
Keep Your Eye On… See page 2
•  The importance of both genetic and
environmental influences on reading
Trauma Systems Therapy
development in young children
•  No association of HPV vaccination with Multimodal, integrated treatment for trauma: TST
serious adverse events
By Richard M. Smith, M.D.
What’s New in Research… See pages 3–5
•  Effects of cesarean delivery on obesity If you want to trace the history of inte-
in early childhood and adolescence grated, multimodal child mental health
•  Understanding toddlers’ ability to learn treatment in the United States, you have to
from media go back at least to the child guidance move-
ment of the 1920s (Horn, 2003), way farther
Editor’s Commentary than I suspected. We’ve come a long way
•  The financing of integrated care since then in our understanding of psychi-
— By Gregory K. Fritz, M.D. atric illness, development, brain function,
See page 8 evidence-based psychotherapies, and psy-
✦✦✦ chopharmacology. But this important idea,
that it takes a team working at all levels to
Free Parent Handout…
tame a mental disorder, still underlies much
E-Cigarettes: of child treatment, and is the core of sev-
A Guide for Parents eral models. A relative newcomer, focusing
on ameliorating the debilitating impact of
trauma, is Trauma Systems Therapy, or TST,
Monthly reports on the problems of children and adolescents growing up
View this newsletter online at wileyonlinelibrary.com • DOI: 10.1002/cbl.20215
These children make progress at a rate
that is significantly slower than is expected
of children their age. However, just as the
development of children who do not have ID
varies, so does the development of children
with ID. Further, for any child with ID, the
development of different areas (i.e., cognitive
abilities, language and speech skills, gross
motor skills, fine motor skills, social-emo-
tional skills, and play skills) may proceed at
different rates, on different timelines, and in
different orders. As a result, the timetable for
achievement of developmental milestones
for a child with ID can be difficult to pre-
dict as well as eventual developmental out-
comes. However, over time, such trajectories
See ID (Part 1), page 5…
formulated by Glenn N. Saxe, M.D., chair of
the Division of Child and Adolescent Psy-
chiatry at New York University, along with
Heidi Ellis, Ph.D., and Julie Kaplow, Ph.D.
I’ve been privileged to be part of the rollout of
TST in the home-based treatment operations
of Family Service of Rhode Island, under the
capable direction of Dr. Adam Brown and the
TST team from the NYU Child Study Center.
TST focuses on dysregulation — emo-
tional, behavioral, and social — when a child
cannot regulate his or her own emotions
when triggered, and/or the child’s social net-
work cannot help the child self-regulate. In
TST parlance, traumatic triggers are “cats’
See TST, page 6…
 2

Keep your eye on…

Editor: Gregory K. Fritz, M.D.
Professor of Psychiatry and Director of the
…the importance of both genetic and environmental influences on
Division of Child and Adolescent Psychiatry,
The Alpert Medical School of Brown University;
Academic Director, Bradley Hospital; Director of
Child and Family Psychiatry, Hasbro Children’s
reading development in young children
Hospital E-mail: gfritz@lifespan.org During the past two decades, there have been substantial studies on the adverse effects of
Founding Editor: Lewis P. Lipsitt, Ph.D. soft drinks on human health, especially chronic disease among adults. Findings from these
Published in cooperation with Bradley Hospital. Founded in
1931, Bradley Hospital (www.bradleyhospital.org) was the nation’s studies have led to changes in policies (e.g., taxing soft drinks and restricting container sizes)
first psychiatric hospital operating exclusively for children. Today
it remains a premier medical institution devoted to the research in some countries. This study focuses on soft drinks and behavior among children. Consistent
and treatment of childhood psychiatric illnesses. Bradley Hospital,
located in Providence, RI, is a teaching hospital for the Alpert Medi- with findings among adolescents in Norway and the United States, high soft drink consump-
cal School of Brown University and ranks in the top third of private
hospitals receiving funding from the National Institutes of Health. tion is positively related to behavior problems in 5-year-old children. The study is important
Its research arm, the Bradley Hasbro Children’s Research Center
(BHCRC), brings together leading researchers in such topics as: because of its large sample size and ability to adjust for a range of confounding factors. The
autism, childhood sleep patterns, infant development, eating disor-
ders, depression, obsessive-compulsive disorder, and juvenile fire- study’s findings are supported by existing evidence. In addition to the chemicals in soft drinks
setting. Bradley Hospital is a member of the Lifespan health system.
Editorial Board: mentioned by the authors, phthalates (chemical substances added to plastics to increase their
Larry Brown, M.D., Director, Research, Child & Adolescent Psychiatry,
RI Hospital; Professor, Dept of Psychiatry & Human Behavior, The flexibility, transparency, durability, and longevity) from plastic packaging may also explain
Alpert Medical School of Brown University
Debra Lobato, Ph.D., Director of Child Psychology, Clinical Associate the link. A high maternal prenatal urinary phthalates level is associated with child behavior
Professor, Dept of Psychiatry & Human Behavior, The Alpert Medical
School of Brown University problems at 3 years old. The study explains that data from the National Health and Nutrition
Rowland Barrett, Ph.D., Director of Child & Adolescent Developmental
Disabilities Program, Bradley Hospital; Associate Professor, Dept of Examination Survey suggest that there is an association between phthalates and attention
Psychiatry & Human Behavior, The Alpert Medical School of Brown
University deficit disorder in children. High consumption of soft drinks among young children is of great
Jennifer Freeman, Ph.D., Director of Child & Adolescent Outpatient
Services, Hasbro Children’s Hospital; Assistant Professor (Research),
concern and supports focusing attention toward reducing consumption. [Suglia SF, et al.
Dept of Psychiatry & Human Behavior, The Alpert Medical School of
Brown University
Soft drinks consumption is associated with behavior problems in 5-year-olds. J Pediatr 2013;
Karyn Horowitz, M.D., Director of Outpatient Services, Bradley Hospi- 163:1323–1328.]
tal; Clinical Assistant Professor, Dept of Psychiatry & Human Behavior,
The Alpert Medical School of Brown University
Jeffrey Hunt, M.D., Director of Training, Division of Child & Adolescent
Psychiatry, Associate Professor, Dept of Psychiatry & Human Behav-

…no association of HPV vaccination with serious adverse events

ior, The Alpert Medical School of Brown University
Thomas Roesler, M.D., Co-Director, Hasbro Children’s Partial Hospital
Program, Hasbro Children’s Hospital; Associate Professor, Dept of
Psychiatry & Human Behavior, The Alpert Medical School of Brown Concerns about vaccine safety by parents is a well-known barrier to vaccination in gen-
University
Henry Sachs, M.D., Medical Director, Bradley Hospital; Clinical Asso- eral, but such fear is often heightened for newer vaccines as parents question the extent to
ciate Professor, Dept of Psychiatry & Human Behavior, The Alpert
Medical School of Brown University which a new vaccine has been tested. A recent study examines an important issue — the risk
Ronald Seifer, Ph.D., Director of Research, Bradley Hospital; Profes-
sor, Dept of Psychiatry & Human Behavior, The Alpert Medical School of serious adverse events among adolescent girls after administration of quadrivalent human
of Brown University
Anthony Spirito, Ph.D., Director of Clinical Psychology Training Consor- papillomavirus (qHPV). The HPV vaccines are given as a series of three shots over 6 months to
tium, Professor of Psychiatry and Human Behavior, Dept of Psychiatry &
Human Behavior, The Alpert Medical School of Brown University protect against HPV infection and the health problems that HPV infection can cause. Depend-
Managing Editor: Kara Borbely
Production Editor: Richard Reicherter ing on the vaccine, they can protect against cervical cancers, genital warts, and cancers of
Executive Editor: Patricia Rossi
Publisher: Peggy Alexander the anus, vagina, and vulva. Set in Denmark and Sweden, the study allows for a more robust
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The Brown University Child and Adolescent Behavior Letter July 2014

What’s New in Research
Effects of cesarean delivery on
obesity in early childhood and
adolescence
Delivery method has an impact on a
child’s health. Delivery by cesarean is a recog-
nized risk factor for a number of health risks,
including short-term lung function impair-
ment, hypoglycemia, reduced breast feed-
ing initiation, altered immune responses, and
long-term effects on immune-related condi-
tions, such as asthma, respiratory morbid-
ity, and type 1 diabetes. Mode of delivery
also shapes the acquisition and structure of
infants’ healthy intestinal microorganisms.
Infants born by cesarean delivery acquire dif-
ferent bacterial communities compared with
those delivered vaginally.
Several cohort and case-control studies
have reported conflicting results regarding
the association between cesarean delivery
and childhood obesity. A recent meta-anal-
ysis found a moderately strong association
between cesarean delivery and later being
overweight and obese. The “hygiene hypoth-
esis” is the background for this possible rela-
tionship, which suggests that a lack of early
childhood exposure to infectious agents,
symbiotic microorganisms (e.g., stomach
flora or probiotics), and parasites increases
susceptibility to allergic diseases by suppress-
ing the natural development of the immune
system. In particular, the lack of exposure
is thought to lead to defects in the estab-
lishment of immune tolerance. In addition,
altered postnatal feeding and metabolic
control in infants born via cesarean delivery
versus those delivered vaginally may have
long-term effects on appetite regulation or
energy metabolism that may contribute to
the significant increase in body mass.
The effect of cesarean delivery on long-
term growth in childhood remains controver-
sial. In a recent study, researchers used longi-
tudinal data from a German birth cohort that
recruited healthy full-term infants to examine
whether cesarean delivery is associated with
growth and whether the effect of cesarean
delivery on growth persists into school age,
after adjusting for socioeconomic status and
maternal and child characteristics.
Study methods
Data were analyzed from the ongoing
German birth cohort LISAplus (Influences
The Brown University Child and Adolescent Behavior Letter July 2014
3
of Lifestyle-Related Factors on the Immune
System and the Development of Allergies in
Childhood plus Air Pollution and Genetics).
This cohort consists of a total of 3,097 healthy
full-term neonates (gestational age >37
weeks and birth weight >2,500 g) recruited
between November 1997 and January 1999
from Munich, Leipzig, Wesel, and Bad Hon-
nef in Germany. Infants with congenital dis-
orders or perinatal problems were excluded.
Physical examinations, including height,
weight, and other body measurements, were
performed when the children were 2, 6, and
10 years old. The number of children with
available data on mode of delivery and mea-
surements was 1,734 at age 2, 1,244 at age 6,
and 1,170 at age 10. Body mass index (BMI)
was calculated using recorded height and
weight measurements.
Information regarding mode of delivery
was collected by questionnaire at enrollment.
Mode of delivery was defined as a binary vari-
able, cesarean or vaginal delivery. Data on
whether the cesarean delivery was elective or
emergency and on perinatal maternal expo-
sure to antibiotics were not available.
Potential influencing factors included city
of recruitment, parental education, duration
of gestation, birth weight, head circumfer-
ence at 3 days of age, maternal age, maternal
prepregnancy BMI, and maternal smoking
during pregnancy. Sociodemographic data
and maternal characteristics were collected
by questionnaire at enrollment and during
follow-up visits. The researchers categorized
parental education according to the greatest
number of years that either parent attended
school (low, <10 years; medium, 10 years;
high, >10 years). In addition, the feeding
variables (i.e., breastfeeding initiation, exclu-
sive breastfeeding duration, and timing of
solid food introduction) were considered as
potential mediators.
Study results
When the researchers analyzed the data,
they found that approximately 17% of the
children were delivered by cesarean. At the
age-2 evaluation, the mothers who deliv-
ered by cesarean had higher mean prepreg-
nancy BMI, higher mean gestational weight
gain during pregnancy, higher proportion
of smoking during pregnancy, and shorter
mean exclusive breastfeeding duration (3.4
months vs. 3.8 months) compared with
those who delivered vaginally. Distributions
of the foregoing variables were similar at 6
and 10 years of age.
A similar distribution of birth weight
was observed in the cesarean delivery and
vaginal delivery groups. Children delivered
by cesarean had a higher mean BMI at age
10 compared with those delivered vagi-
nally. BMI z-scores (calculated based on the
specifications of the World Health Organi-
zation) at age 2 and 10 were higher in the
cesarean group. The prevalence of obesity
at age 2 also was higher in the cesarean
group (13.6% vs. 8.3%). This difference did
not persist to age 6 or 10.
A comparison of basic characteris-
tics of study participants and nonpartici-
pants revealed no major differences in
BMI characteristics and cesarean delivery
rate between participants and nonpartici-
pants for all time points. However, children
recruited in Leipzig and those born to a
young mother or to parents with a low edu-
cational level (<10 years) were more likely to
drop out of the study.
The researchers conducted a meta-anal-
ysis of similar studies with birth cohorts in
China, the United States, Denmark, and two
studies in Brazil, which concluded that indi-
viduals delivered by cesarean have a mod-
erately increased risk of being overweight
between 3 and 23 years of age. However, many
of the studies included in this meta-analysis
did not provide information on early feeding
patterns and maternal prepregnancy BMI,
and none excluded preterm and small for ges-
tational-age infants. These important differ-
ences may explain the conflicting results the
researchers found reported among studies.
Study implications
The researchers acknowledge that indi-
cators for cesarean delivery could lead to
selection bias, and may vary among studies.
Multiple factors may play more important
roles than cesarean delivery on obesity later
in life. For instance, maternal prepregnancy
BMI is known to influence the child’s birth
weight and is an independent determinant
of the child’s BMI later in life. Cesarean
delivery may only be an intermediate factor
in the association between maternal pre-
pregnancy BMI and offspring obesity. More-
over, there may be other similar influencing
factors (e.g., birth weight, feeding habits,
food intake, physical activity) as well.
Continued on next page…

Continued from previous page…
Based on previously published data and
their results, the researchers hypothesize
that the effect of cesarean delivery on obesity
may be stronger during early childhood (e.g.,
age 3), but that the magnitude of this effect
may decline with age. A possible explanation
for this effect is that as children grow older,
several other risk factors for obesity may
become more important than the mode of
delivery; these may include family dietary
habits, television viewing, physical activity,
and an obesity-prone environment.
Ultimately, this study concluded that
cesarean delivery may increase the risk of
obesity during early childhood, but the data
does not support the hypothesis that the
increasing rates of cesarean delivery are con-
tributing to obesity later in childhood.
✦✦✦
Zhengcun P, et al. Cesarean delivery and risk of
childhood obesity. J Pediatr 2014; 164:1068–1073.
Understanding toddlers’ ability
to learn from media
Young children’s ability to learn lan-
guage from video is a hotly debated topic.
Some evidence suggests that toddlers do not
acquire words from screen media before age
3, whereas others find limited learning or
recognition in the first 3 years. However, a
common finding in the literature is that chil-
dren learn language better from a live person
than from an equivalent video source. What
makes social interactions superior to video
presentations for children’s language learn-
ing? A recent study hypothesized that a key
difference between the contexts of screen
media and live interaction is social contin-
gency between the speaker and the learner.
The so-called video deficit, or the dis-
crepancy between learning from a live per-
son and learning from an equivalent media
source, is a widely known phenomenon. Pre-
vious studies have shown that even though
children older than 3 years gained some
information from video alone, this learning
was still not as robust as learning from live
social interactions.
Given the overwhelming evidence that
young children do not learn as much from
video as they do from live interactions, what
accounts for this discrepancy? One line of
research, outside of the language literature,
suggests that children do learn from video if
the video format also allows them to engage
The Brown University Child and Adolescent Behavior Letter July 2014
4
in a contingent interaction. Contingent inter-
action is when a child starts to display recip-
rocal actions and reactions with other peo-
ple. This means that children start to under-
stand beyond their own wants and needs
and also take others’ into consideration. For
the purpose of their study, these researchers
defined socially contingent adults as social
partners whose responses were immediate,
reliable, and accurate in content. Although
this differs from the traditional definition of
contingency, in which synchrony of timing is
the only requirement, the characteristics of
social interactions — such as turn taking —
support a broader definition of social contin-
gency. The researchers here were looking to
observe if children would respond with the
same “if you do this, I do that” actions when
interacting with a recorded stimuli as to a live
stimuli or a video stimuli.
Study methods
To understand if word learning relies
on social contingency, researchers exam-
ined the interactions of children with
pre-recorded videos and live video chats,
hypothesizing that children’s learning from
video chats would be more similar to learn-
ing from live interactions than to learning
from video. Thirty-six children between
the ages of 24 and 30 months (19 male,
17 female) participated in the study. They
chose this age because 24-month-olds show
robust verb learning from social interac-
tions but do not yet show evidence of verb
learning from video displays. Children were
randomly assigned to one of three training
conditions: 12 children participated in the
video chat condition, 12 in the live inter-
action condition, and 12 in the recorded,
canned video condition. The yoked video
condition showed participants pre-recorded
video of the experimenter communicat-
ing in a video chat with another child. The
researchers faced some special challenges
because of the age group of their study sub-
jects, and an additional eight participants
were excluded from the current data set for
fussiness (two), bilingualism (one), experi-
menter error (two), prematurity (two), and
technical difficulties (one). Of the excluded
participants, three were from the video
chat condition (one for fussiness, one for
technical difficulties, one for prematurity),
three were from the live condition (one for
fussiness, one for bilingualism, and one for
experimenter error), and two were from the
yoked video condition (one for experimenter
error and one for prematurity). All children
were full-term and were from monolingual
English-speaking households.
To determine whether language learn-
ing in video chats is similar to learning
from live interactions or from yoked video,
the researchers used a modified version of
the Intermodal Preferential Looking Para-
digm (IPLP). The IPLP is a dynamic, visual
multiple-choice task for children. Here, the
dependent variable is comprehension, as
measured by the percentage of gaze duration
to the action that matches the novel verb dur-
ing the test trials. In addition, the research-
ers collected eye-tracking data to determine
whether children looked at the experiment-
er’s eyes during screen-based training (i.e.,
video chat and yoked video training). The
dependent variable here is the percentage
of looking time toward the experimenter’s
eyes. The presentation screens and environ-
ment in which the stimuli were administered
were the same for all three training condition
groups, but for the live group, no stimuli were
administered via the screens.
Each child was trained and tested on four
verbs with which they would have no previ-
ous experience (such as “blicking”), and an
action was assigned to that verb. Blicking,
for instance, was defined and demonstrated
as bouncing. This allowed the researchers
to be certain that the associations and con-
tent learned was contained within the train-
ing sessions. To train children on each of
the novel verbs, an experimenter performed
the referent action with the designated prop
while labeling the action with the novel verb.
By demonstrating bouncing and calling it
“blicking,” the researchers were able to iso-
late a specific word/action and measure the
child’s ability to learn that new association.
Study results
This study used a new technology, video
chats, to begin to understand the mechanism
behind the dichotomy between discussions
of young children’s ability to learn language
from live interactions but not from screen
media. The researchers asked whether lan-
guage learning via video chats is similar to
learning in live interactions or learning from
video. They found that toddlers learned
novel words both from video chats and from
live interactions, suggesting that socially con-
tingent interactions are a powerful catalyst
for word learning. Children who learned in
these contingent environments extended the
novel verbs to new instances of the action,

a task that is more demanding than sim-
ply matching verb meanings to actions, and
children resisted applying a second novel
label to the same action. The child learned
the new verb and could identify the correct
action, not misapplying one of the other new
verbs. In addition, the researchers found
some evidence that children who attended
to the experimenter’s eyes during training
learned the novel words better. The research-
ers also replicated the finding that children
younger than 3 years do not learn language
from video alone in the data gathered from
the yoked control group.
Study implications
This research has implications for the
role of social cues in language learning as
ID (Part 1)
From page 1
become more predictable based on the
child’s prior rates and breadth of perfor-
mance. Variables key to the eventual devel-
opmental progression for any child with
ID will include the following: (1) the child’s
inborn biological and neurological capacity
(which set the general limits for the rate and
eventual endpoints of development); (2) the
ongoing environmental factors to which the
child is exposed (e.g., type and amount of
stimulation); (3) any associated disabilities
or medical problems of the child; and (4)
the child’s support network’s ability to assist
him/her in addressing these challenges.
Disruption of mastery of developmental
skills specific to developmental periods
The mastery of developmental “skills”
specifically associated with each develop-
mental period can present unique chal-
lenges for a child or adolescent with ID. A
disruption in the mastery of specific devel-
opmental skills also can present unique chal-
lenges for the child or adolescent’s caregivers
and family, in how they initiate as well as
respond to the child.
Infancy
Infancy is characterized by the develop-
ment of attachment, self-regulation, and
environmental awareness and explora-
tion. ID and associated disorders may dis-
rupt mastery in each of these areas. Many
The Brown University Child and Adolescent Behavior Letter July 2014
5
well as for how children process screen
media. The results of this study not only
address contingency as a critical social cue
but also highlight the capability of screen
media to capitalize on the power of social
contingency. Socially contingent interac-
tions, like those in video chats and live inter-
actions, provided toddlers with sufficient
social information to learn language.
Of the possible mechanisms that facili-
tate young children’s language acqui-
sition, this study highlights the role of
social contingency. Video chat technology
allowed the researchers to compare learn-
ing from socially contingent screen media
with learning from socially contingent live
interactions and noncontingent video.
The results unequivocally suggest that
developmental processes in infancy focus
on strengthening attachment. Eye contact,
a social smile, and cooing and other vocal-
izations often are delayed or nonexistent
in children with ID. For infants with sig-
nificant neurological or physical disabilities,
uncertainty about their survival or prognosis,
long-term postnatal hospitalizations, or pro-
longed intrusive medical interventions also
inhibit normal attachment.
Families often experience anger, denial,
sorrow, and a prolonged grieving process in
response to having a child with ID. This also
may interfere with the attachment process. In
children with more subtle delays, the inabil-
ity to achieve milestones at expected inter-
vals may lead to misgivings about parental
skills and increasing frustration. Autism
spectrum disorders, often associated with
ID, create further obstacles to attachment.
Delays in motor coordination and explo-
ration of the environment often create a
greater dependence on caregivers that is a
harbinger of future interactive patterns. This
may be enhanced by comorbid medical dis-
orders, such as seizures, that enhance paren-
tal vigilance. Conversely, social withdrawal
and isolation are frequent presentations.
Early childhood
Many children’s ID and associated delays
are identified during this period. Parental
response, both emotionally and in terms
of expectations, impacts on this period of
personal mastery. Maintaining unrealistic
expectations of trying to “prove the experts
wrong” leads to increasing frustration and
language learning is improved by social
contingency.
As the entertainment industry becomes
more technologically advanced, the ability
to incorporate live interactions into media
would transform passive viewing experi-
ences into socially contingent learning situ-
ations. Thus, children’s learning from media
may not be a product of the medium per se
(i.e., video chat, video, or live interaction),
but rather the type of interaction children
experience with the media.
✦✦✦
Roseberry S, et al. Skype me! Socially contingent
interactions help toddlers learn language. Child
Development 2014; 85(3):956–970.
tension in the parent-child relationship.
Conversely, removing or minimizing expec-
tations may inhibit the development of many
key skills. This may create an environment of
overprotection or chronic parental apathy
that squelches individual initiative.
Language development is usually
delayed in persons with ID. Mild delays are
often overlooked or misinterpreted. Early
intervention, which can be very helpful, is
often unintentionally delayed. Deficits in
language and communication development
are some of the best predictors of behavioral
difficulties in children with developmental
disabilities. Frustration at not being able
to communicate needs or desires may lead
to disruptive, aggressive, or self-injurious
behavior. Social failures are often the result
of an inability to follow the flow of com-
munication and basic interpersonal cues.
Isolation or increased reliance on selected
caregivers may be inadvertently reinforced.
In this regard, it is important to recognize
that children with specific language disor-
ders may develop effective alternative com-
munication systems to express their needs.
Self-care skills are frequently delayed.
Associated fine and gross motor delays may
prevent children from successfully dress-
ing, going to the toilet, or feeding them-
selves. Children with less severe delays may
express the desire to perform these tasks
without the requisite skills. This may lead
to increasing conflict with caregivers. For
those with a more severe form of ID, there
is often the lifelong inability to contribute
Continued on next page…

Continued from previous page...
effectively to activities of daily living. Oppor-
tunities for child care may be greatly reduced
by the child’s lack of self-care skills. Unfor-
tunately, it is just those parents who must
continue providing their children with inten-
sive assistance who would benefit most from
more readily available child care.
Spontaneous, meaningful play may be
delayed or missing. Children with a more
severe form of ID may engage in seemingly
undirected or self-stimulatory behavior
instead of appropriate play. Children with
lesser delays may only develop some sym-
bolic play as they are about to enter school.
Isolated or parallel play may predominate,
especially when communication skills are
significantly impaired.
As with all children, many factors dur-
ing this formative period contribute to per-
sonality development. The challenges of
skill mastery, communication, emotional
and physiological self-regulation, and how
caregivers address these issues have signifi-
cant implications. For children with milder-
severity ID, self-esteem, trust, and perceived
competence form the basis of interpersonal
relationships and a sense of self in the world.
For those with more severe delays, the care-
giver’s ability to assist the child effectively in
regulating responses to internal and envi-
ronmental stimuli helps create a lifelong
style of behavior.
Childhood
For many children with ID, beginning
school is the first exposure to a large number
of children without disabilities. It may be the
first time descriptors such as “intellectually
TST
From page 1
hair.” This is a reference to findings that the
play of rat pups diminishes or disappears
suddenly and dramatically when cat hair is
introduced into their living area. The TST
team assesses the child’s degree of dysregula-
tion and the family’s level of safety and cohe-
sion. These determine what phase of treat-
ment the system requires: Safety Focused,
Regulation Focused, or Beyond Trauma,
each with its own intervention strategies
(Saxe et al., 2007, and training communica-
tion with the TST/NYU team).
The Brown University Child and Adolescent Behavior Letter July 2014
6
disabled,” “slow learner,” or other pejorative
terms are encountered. This may be particu-
larly challenging to children with mild ID.
While increased academic mainstreaming
has elevated the awareness of many typical
children regarding disabilities, children with
ID are often still perceived as different and
the target of peer taunting and rejection.
As important, they perceive themselves as
different. This becomes particularly chal-
lenging in the later elementary grades as
peers become less tolerant of anyone seen
as different. It is also a time when children
with mild- to moderate-severity ID become
increasingly aware of their limitations. Social
withdrawal, isolation, and depression often
manifest during this period. Some children
display externalizing or acting-out behavior
as an increasing desperation to be socially
accepted coincides with peers’ increased
willingness to use them as foils.
Participation in extracurricular and com-
munity activities is a hallmark of this age.
Athletics may be inaccessible for some with
significant associated physical handicaps.
The nationwide Special Olympics initia-
tive and greater understanding and support
from many school districts have increased
the participation rate of children with ID
and other developmental delays in athletics.
Group activities such as scouting have cre-
ated subgroups that are more geared toward
children with special needs but may isolate
them from the mainstream, increasing their
awareness of perceived differences. Dance
and martial arts classes are often very well
received by parents and children alike.
Most children with ID need support in
the classroom in terms of either special
TST treatment principles emphasize sys-
temwide effort, from child up through family,
school, and the wider community; working
as an accountable team that takes care of
itself and keeps safety uppermost; having
well-defined goals that both build on existing
strengths and target what is doable and likely
fruitful given scarce resources; and making
sure the family is truly on board.
So if the most important thing in real
estate is location, location, location, in TST
perhaps it’s alliance, alliance, alliance. For
clearly there is no point in starting to inter-
vene before you can agree with the family
on the problem, the solution you propose,
and that the solution is workable. And we
resource support or placement in a self-
contained special education classroom. As
peers tackle more demanding language and
abstract concepts, children with mild ID
increasingly struggle to keep up. Academic
failures are common. For children with more
severe delays, the goals of education often
change from preparation for higher educa-
tion to life skills and vocational activities,
further differentiating them from peers. The
rigid demands of an academic schedule may
be very different from the previous flexibility
of home. Children with ID will have greater
difficulty adapting to this change. This dif-
ficulty often will be expressed behaviorally,
as they are unable to convey via communica-
tive skills the ensuing frustration and confu-
sion. The subtleties of communication and
behavioral routines, well learned by families,
may be lost on teachers caring for numerous
children with varying special needs.
✦✦✦
Barbara Tylenda, Ph.D., ABPP, is a clinical associ-
ate professor in the Department of Psychiatry
and Human Behavior (DPHB) at Alpert Medical
School of Brown University; associate director of
the Brown University Clinical Psychology Training
Consortium; and chief psychologist at the Center
for Autism and Developmental Disabilities (CADD)
at E. P. Bradley Hospital in Riverside, Rhode
Island.
Rowland P. Barrett, Ph.D., is an associate pro-
fessor in the DPHB at Alpert Medical School of
Brown University.
Henry T. Sachs III, M.D., is a clinical assistant
professor in the DPHB at Alpert Medical School
of Brown University; the medical director of the
Lifespan Pediatric Behavioral Health Services; and
the chief medical officer at E. P. Bradley Hospital
in Riverside, Rhode Island.
all do that from time to time — but not in
TST. Instead, its first order of business after
assessment is what TST calls “Ready Set
Go,” a thoroughgoing discussion with family
about the problem, the TST philosophy, and
the possible obstacles of treatment, to create
a solid foundation of mutual understand-
ing about the underlying problems as the
team and family see them, a realistic look
at whether and how obstacles can be over-
come, and a commitment to go forward with
TST together.
What’s in TST’s toolbox? Nothing brand
new, but it’s the disciplined use of the whole
range of tools targeting all levels of the system
that counts. Careful assessment of the child

and family in context comes first. We’re look-
ing at the history of trauma and everything
else — symptoms, family make-up, stressors,
neighborhood factors, school history, legal
and other larger community stressors, and
financial pressures. Then we’re on to careful
treatment planning targeting key stressors
(like loss of employment), trigger points (see-
ing a perpetrator in the community), family
issues (mother has also experienced trauma
and gets triggered), and possible obstacles
(no transportation), as well as building on
and building up existing strengths. This part
requires hefty involvement of family, the
Ready Set Go phase, and then on to the
six areas of intervention, depending on the
phase and the specific treatment plan.
Stabilization on site
This primarily home-based therapy first
looks at the safety of the child and the child’s
context (and even before that, of course,
whether it’s safe for the team to enter in the
first place). Then the work centers on analyz-
ing what triggers and follows from the child’s
dysregulated behavior, and then on how to
prevent the triggers, slow or defuse escala-
tion, and/or help the child return to stability.
It’s like looking at a football game in super slo-
mo, only maybe the players don’t even know
what game they’re playing or how. Families
often start out reporting that there are no
triggers whatsoever — “he just blows up, it’s
random,” they may say. Only after a lot of
work can they be coaxed to see that it’s much
more complicated, and also less, because the
triggers are knowable, predictable, and often
preventable. Getting people to accept their
own role in the triggering can be harder still.
Systems advocacy
Systems advocacy — that is, advocacy
in the wider community — includes things
like helping a hungry family get food stamps
they didn’t know how to access; preventing
a gas shutoff; helping get a more appro-
priate educational placement; talking to a
principal about calling the kid “idiot” twice
in the same interaction; and lobbying for a
scared kid in a dangerous neighborhood to
be allowed to have a dog.
Psychopharmacology
As Dr. Saxe recently allowed at a confer-
ence of TST providers, this is not the best of
stories. The data on medication for trauma
is not great in quantity or encouragement
of any specific approaches. I think we’ve all
The Brown University Child and Adolescent Behavior Letter July 2014
7
been tempted to use selective serotonin re-
uptake inhibitors, yet the data do not encour-
age that. I think for now the best plan has to
be to target what you can that facilitates func-
tioning, and perhaps equally or even more
important, workability in TST and other psy-
chosocial treatments. That could mean treat-
ing attention-deficit hyperactivity disorder
(and often associated aggression) with stim-
ulants, helping a kid get a good night’s sleep
with melatonin or clonidine, or treating a
clear-cut major depression or panic disorder
with the best data-supported agents. Maybe
we can’t yet directly or reliably target trauma-
related reactivity, but these other things we
certainly can, and they matter.
Basic emotional self-regulation skills can
be worked on (mostly) at the individual level.
Here children are learning how to identify
their own emotional states, the triggers to
escalation, the signals that they are “revving
up,” or even re-experiencing trauma. On the
flip side is stocking the kid’s skill set for cop-
ing with overwhelming emotion: relaxation,
refocusing, positive self-talk, and others
recognizable from the cognitive behavioral
therapy (CBT) panoply.
This module contains more trauma-
focused cognitive skills from the domain
of trauma-focused CBT, such as dealing
with trauma-specific intrusive thoughts,
self-observation of the interrelationships
between thoughts and feelings, and working
directly with the trauma narrative.
Meaning-making skills
This follows in the footsteps of Viktor
Frankl’s inspiring work on surviving the worst
forms of trauma. The goal here is to encapsu-
late the trauma within a broader context, a life
that is richer and more meaningful than one
defined by trauma. If trauma can foreshorten
one’s sense of the future, then meaning-mak-
ing can re-expand it. Skills in this module
include defining the lessons learned through
the trauma, rebuilding or reshaping one’s self-
definition, fleshing out goals for the future
that go beyond simply surviving, and enacting
meaning. The latter could take a million forms
unique to the individual and circumstances
but could include artwork, a fundraising proj-
ect, a dedicated effort to help other victims of
similar trauma, and so on. A natural correlate
of this phase is saying good-bye to therapist
and team, and transitioning out of treatment.
Our skeptical sides should now be saying:
“Nice ideas — does it work?” Here’s a sum-
mary of the evidence:
• In a study of retention, 90% of kids
receiving TST were still in treatment
at three months, compared to 10% in
care-as-usual (Saxe et al., 2012).
• An open trial of 110 children given TST
showed significant positive change in
a number of areas after three months
of treatment, but the key outcome
measure was a clinical report (Saxe et
al., 2005).
• Implementations in several residen-
tial settings showed promise, such as
reduced use of restraint and seclusion
and placement stability, but without
comparison groups (Brown et al., 2013).
• Tracking of 124 children receiving TST
out as far as 15 months showed prom-
ising results and potential for cost sav-
ings but lacked a comparison group
(Ellis et al., 2012)
So the data is promising but preliminary.
Certainly there appears to be much of value
in TST, while determining its place and stay-
ing power in the armamentarium of child
mental health treatment is still a work in
progress.
✦✦✦
Richard M. Smith, M.D., is a clinical assistant
professor at the Warren Alpert Medical School of
Brown University, staff psychiatrist in child and
adolescent psychiatry at Rhode Island Hospital, and
medical director of Family Service of Rhode Island.
References
Brown A, et al. Trauma systems therapy in residen-
tial settings: Improving emotion regulation and the
social environment of traumatized children and
youth in congregate care. Journal of Family Violence
2013; 28(7):693–703.
Ellis, BH, et al. Trauma systems therapy: 15-month
outcomes and the importance of effecting envi-
ronmental change. Psychological Trauma: Theory,
Research, Practice, and Policy 2012; 4(6):624–630.
Horn, M. Child guidance. In PS Fass (Ed.), Ency-
clopedia of children and childhood: In history and
society. Macmillan Reference/Thompson Gale;
2003. Retrieved from http://www.faqs.org/childhood/
Bo-Ch/Child-Guidance.html. Accessed April 10, 2014.
Saxe, GN, et al. Comprehensive care for traumatized
children: An open trial examines treatment using
trauma systems therapy. Psychiatric Annals 2005;
35(5):443–448.
Saxe, GN, et al. Collaborative treatment of trauma-
tized children and teens: The trauma systems thera-
py approach. New York, NY: Guilford Press; 2007.
Saxe, GN, et al. Innovations in practice: Preliminary
evidence for effective family engagement in treat-
ment for child traumatic stress—Trauma systems
therapy approach to preventing dropout. Child and
Adolescent Mental Health 2012; 17(1):58–61.
 8
Editor’s Commentary
The financing of integrated care
By Gregory K. Fritz, M.D.
W
hen it comes to behavioral health
care, the winds of change are blow-
ing strong. While it may be an exag-
geration to use the “perfect storm”
metaphor, it is clear that the Affordable Care
Act (a.k.a. Obamacare) and the potential for real
mental health parity (i.e., the end to government-sanctioned dis-
crimination by insurance companies against those with psychiatric
disorders) are very likely to lead to new ways of providing mental
health services. The Affordable Care Act seeks to expand health
care coverage, improve quality, and control costs. One promising
approach that is receiving considerable attention is integrated care,
in which mental health services are provided together with medi-
cal care by a coordinated team of primary care and mental health
professionals. Numerous clinical reports of pilot projects studying
various models of integrated care have been encouraging, but less
is known about the potential for cost savings.
To shed light on the economical impact of integrated care, the
American Psychiatric Association commissioned the global con-
sulting and actuarial firm Milliman, Inc. to study a large number of
adults with chronic medical and behavioral comorbidities. Their
report was released, to great fanfare, in April 2014 (http://www
.psychiatry.org/integratedcare), and it deserves our attention.
In essence, the report documents substantial levels of untreated
mental health or substance abuse disorders among those with
chronic medical conditions. Even though treatment of behavioral
health problems accounts for about 30% of total health care spend-
ing for insured patients ($525 billion out of $1.7 trillion annually),
they are far from fully addressed. Fragmented care results in gen-
eral medical care costs for those with both chronic medical and
mental conditions that are 200% to 300% more than general medi-
cal costs for those who have chronic mental conditions only. The
report concludes that effective integrated care could save $26–$48
billion annually. Even though such a wide range underlines the
fact that these figures are only estimates, the potential for savings
of this magnitude (compared to steadily increasing costs) is turn-
ing the heads of health care planners. Should child mental health
professionals jump on the bandwagon?
It turns out that, as is so often the case, one can’t simply extend
the findings from a study based solely on adults to the world of
children and adolescents. The pediatric population is, on the
whole, mostly healthy. Beyond the neonatal period, serious (and
expensive) chronic conditions are relatively rare in children and
adolescents, in contrast to diabetes, heart disease, cancer, etc.,
which are common in every internal medicine primary care prac-
tice. Thus, the total and average per-patient health care costs are
comparatively small for children and adolescents and the huge
immediate savings, so tantalizingly described for adults in the Mil-
liman Report, are not there to fund the pediatric shift to integrated
care. Further, the medical health home for children and adoles-
The Brown University Child and Adolescent Behavior Letter July 2014
cents is more complicated than the corresponding integrated care
site for adults. Due to children’s dependency on the important
adults in their lives, pediatric care has to be family-centered, unlike
the simpler patient-centered model that works for adults. Finally,
the demographic changes that challenge our health care system —
increasing minority percentages, growing income disparities, etc.
— overall impact youngsters more than adults.
The danger I worry about is that because the immediate mon-
etary savings associated with integrating behavioral and medical
health care for adults are not readily seen for children’s services,
children’s mental health and primary care will be left to languish in
the fragmented, inadequate nonsystem that we are currently living
with. I believe that would be short-sighted and tragic.
Given that half of all lifetime mental illnesses begin
by age 14 and three-quarters by age 24, the poten-
tial to prevent costly adult morbidity is where the
savings lie with pediatric integrated care.
Abundant evidence points to the lack of access to needed
mental health services experienced by millions of children. Given
that half of all lifetime mental illnesses begin by age 14 and three-
quarters by age 24, the potential to prevent costly adult morbidity
is where the savings lie with pediatric integrated care. The problem
is that projections of savings are very difficult to calculate where
the time frame is 20 years rather than 2 years. Improved access to
children’s mental health services through integrated care models
can be expected to eventually lead to fewer adults incarcerated in
prisons, less productive time lost to substance abuse and depres-
sion, and fewer psychiatric hospitalizations and emergency room
visits by adults. However, the long-term data on the timing and
magnitude of these savings are lacking.
As I see it, child mental health professionals and our pri-
mary care colleagues need to plunge ahead into the exciting but
uncharted waters of integrated services. Immediate cost savings
cannot be the only marker of success. Improved functioning in
school, fewer mental health crises, a reduction in the juvenile
justice population, and normalized development are worthy out-
comes to be demonstrated while the longitudinal benefits of pre-
vention are accruing.