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children with clefts have a higher than average likelihood of reading
disabilities and learning problems; (2) their school achievement level is
often one full grade below chronological age (47% of children with
clefts function below grade level, and 36% demonstrate reading
disabilities) (Broder et al, 1998; Richman, 1980; Richman et al., 1988);
and (3) even nonsyndromic individuals with clefts may have anomalous
brain structure (Conrad et al., 2010; Nopoulos et al., 2000, 2001, 2002,
2007; Richman and Nopoulos, 2009; Rosen et al., 2011; van der Plas et
al., 2010).
As stated by Richman et al. (2012, p 387): “For many children with
cleft, delayed speech and language development has been shown to be
related to subtle auditory memory deficits, expressive language
difficulty, and sometimes more severe central language impairment,
which can result in long-term reading deficits (Richman 1980) and other
learning disabilities (Richman et al., 2005).”
No teacher or counselor would want to emphasize any of these
findings to a youngster with a cleft or to the child's family. Rather, the
emphasis should be on prevention of learning and reading problems by
intervention. Careful assessment of visuomotor skills, visual memory,
verbal labeling, comprehension, phonological development, and
expressive language skills should be carried out in the preschool years
and repeated at intervals throughout the school years. Both speechlanguage therapy and intervention for learning and reading problems
should be instituted, when indicated, and vigorously maintained to
raise the youngster up to his highest level of potential.
In a very early study, Richman (1976) looked at both behavior and
achievement in school-age children (9 to 14 years old) with clefts
compared with a matched control group. School achievement was lower
for both boys and girls with clefts (even though intelligence quotients
were matched between groups) and lower for the boys than for the
girls. Classroom teachers complete a behavior problem checklist for
each child. The children with clefts were rated as showing excessive
inhibition of impulses. Although inhibition of impulse is something we
expect children to develop gradually as they mature, children with
clefts seem to show greater inhibition (sometimes equated with shyness,
social withdrawal, and so forth) than considered normal for
chronological age. Clinicians and researchers have aributed the
increase in inhibition to an unconscious aempt by the child to avoid
calling aention to himself or herself or to avoid situations that give rise
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to negative responses from others. Richman (1976) pointed out that
although impulse inhibition may be a way of coping with negative
social responses from peers, in the competitive classroom environment
the inhibited child may meet with less success than his or her peers.
The link between problems in social adjustment and problems in
school achievement has reappeared in multiple studies on children with
clefts since this study was published. The behavioral characteristics of
passivity and social withdrawal or social reticence were frequently
reported in children with clefts in studies throughout the 1970s, 1980s,
and 1990s. However, more recent studies paint a somewhat different
picture. See the studies by Brand et al. (2009), Colle et al. (2012),
Feragen et al. (2009), and Klein et al., (2014) that are discussed later.
SLPs should be especially interested in a 2011 study by Chapman in
which she compared the reading skills, speech production abilities, and
language abilities of 28 5-year olds with clefts with those of matched
control children. She found a statistically significant correlation between
early reading skills and speech production abilities, as well as between
early reading skills and language abilities. The children with the most
severe speech problems were the children with the poorest performance
on the reading test. Chapman emphasized the need for early
intervention. In a similar vein, Lee et al. (2015) assessed 15
nonsyndromic youngsters with cleft lip and/or palate in the age range
of 6 to 8 years and once again reported problems in phonological
awareness and spelling skills, the kinds of problems we know can lead
to long-term problems in reading and learning.
Although having a cleft can complicate some aspects of school
adjustment, achievement, and social behavior, a cleft does not have to
mean inevitable failure, frustration, or unhappiness for the child and
parents. Two publications by Colle et al. (2010, 2012) reported data
from a longitudinal study of a group of children with clefts and a large
group of controls. These children were followed from infancy through
the age of 7 years. Contrary to what had been published in many other
studies on language problems in children with clefts, Colle et al. (2010)
found no significant group differences in language at ages 5 and 7 years,
and at 7 years the children with clefts scored significantly higher than
controls on measures of early reading skills. However, 56.5% of the
children with cleft lip and palate and 40.9% of those with cleft palate
only were in special education placement, as compared with 19.3% of
the controls; the most frequently reported special education
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classification for all groups was communication disability, followed by
specific learning disability.
Colle et al. (2010) pointed out that demographics constituted one of
the predictive dimensions in this study: most of the children were from
white, non-Hispanic, middle-class families. Other predictive variables
were early mother-child interactions during teaching and feeding tasks
and cognitive development scores at age 24 months.
In the later study, Colle et al. (2012) looked at psychosocial
functioning in an expanded number of both children with clefts (N = 93)
and controls (N = 124). Their data came from questionnaires mailed to
families that included checklists for child behavior and social
competence, in addition to an inventory of parental stress. These
investigators found minimal differences in psychosocial function
between the youngsters with clefts and controls and minimal
differences between the parents of the children in the two groups. This
was a population-based study, as opposed to a study using patients
from a clinical database. These investigators remarked: “Psychosocial
differences may be less apparent in population-based versus clinicbased samples. Alternatively, social-emotional deficits may become
apparent in older school-aged children, making the preschool and early
elementary school years an optimal time for preventive intervention” (p
397).
School-age children have a lot to say about themselves and thus
constitute a source of valuable information for researchers. Feragen et
al. (2009) obtained 10-year follow-up questionnaires completed by 722
10-year-old children with clefts and found that psychosocial resilience
was associated with adequate emotional functioning, high satisfaction
with appearance, and a lower frequency of reported teasing. In a later
study, Feragen and Stock (2014) included child interviews, not just
rating scales of behavior, as they derived data on psychosocial
adjustment in children with multiple anomalies. Brand et al. (2009)
conducted a cross-sectional study of 32 youngsters with clefts who were
between the ages of 6 and 16, comparing the findings in those
youngsters with those in 34 controls. These investigators looked at
emotional problems and conduct problems or hyperactivity and found
that the youngsters with clefts did not differ from the control group
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with respect to any of these parameters, yet they were six times more
likely to self-report problems with interactional competencies. These
findings remind us of the importance of listening to the child, rather
than just observing or rating the child's behavior. Another encouraging
set of results for school-age youngsters came from Klein et al. (2014) in
which the mothers of children with clefts in the age range of 9 to 14
years were found to be appropriately concerned about their children's
peer relationships and thoughtful in devising strategies to manage
social challenges successfully.
Adolescents
It is unlikely that anyone who has ever parented a teenager would
describe that task as problem-free. The need for autonomy that appears
in toddler years appears again in the early teens and causes just as
many parent-child bales. Parents strive to “support without
smothering.” Kapp-Simon (1995a) pointed out that the normal
developmental tasks of adolescents include individuation from family,
development of a sense of personal identity, and establishment of
satisfactory peer relationships.
Not surprisingly, many studies have demonstrated the importance of
satisfaction with appearance for teens and the role this satisfaction plays
in self-concept and social relationships. Kapp-Simon (1995a) made
specific suggestions for helping teens handle teasing, drawn from her
social skills training program (Kapp-Simon and Simon, 1991). In this
program hypothetical situations are presented to the youngster on
videotape for rehearsing responses that are direct, honest, and unlikely
to stimulate further teasing.
Teenagers are old enough to participate in decisions about any
further treatment procedures (Kapp-Simon, 1995a; Strauss, 2001). When
it comes to proposed surgical or orthodontic procedures, he or she may
volunteer, “I'm satisfied with the way I look,” only to have the parent
stress the need to follow “the doctor's” recommendation. Both
caregivers and parents must be careful that the youngster has been
given accurate, complete information about what “the problem is” and
what is being proposed for treatment. In addition, some teenagers
object to more speech therapy. Unless the teen himself or herself agrees
that it is necessary and believes that it can make a difference in his or
her life, therapy is destined to be useless.
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Strauss et al. pointed out in 1988 that teenagers with craniofacial
anomalies are not necessarily out of the woods by virtue of either
maturation or treatment (orthodontics, surgery) by the time they are on
the brink of adult life.
We would like to think that things have changed for the beer in the
past 3 or 4 decades. In a large study of 145 families of adolescents with
clefts, Berger and Dalton (2009) found lile evidence of psychosocial
adjustment difficulties in either the teens or their mothers. These
investigators felt that their results highlighted the importance of timely
interventions and seeking multiple perspectives in the clinical
management of a child with a cleft. These same investigators (Berger
and Dalton, 2011) later went back to look at factors predicting
psychosocial adjustment in both the teenagers and their mothers. In the
adolescents, psychosocial adjustment was predicted by their social
experiences and the well-being of their mothers. For the mothers,
adjustment was predicted by their own acceptance of the situation
(rather than denying problems) and by the coping strategies they used.
In this report, greater adjustment difficulties were found in boys than in
girls. Boys tended to use the avoidant coping strategy of “blaming
others.” These findings were in opposition to those of Kapp-Simon and
Dawson (1998), who found that adolescent girls exhibited more
elevated levels of behavior problems compared with boys.
Overall, there are conflicting reports on whether boys or girls exhibit
the most problems in psychosocial adjustment. Adjustment to facial
differences may be more difficult for girls, but boys tend to
“externalize” more by blaming others and acting out. There is ample
evidence that both school-age children and teenagers exhibit
dissatisfaction with physical appearance (Slifer et al., 2004; Thomas et
al., 1997) and associated teasing from peers (Hunt et al., 2006). In a 2007
follow-up study of 129 young people with clefts who were between the
ages of 8 and 18 years, Hunt et al. found the most significant predictor
in parental reports of psychosocial impairment in their children was a
history of teasing related to facial appearance. Kapp-Simon et al. (2005)
cautioned that use of social withdrawal as a protective coping
mechanism in adolescents may increase the risk of teasing and have an
impact on overall levels of adjustment.
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The 2013 report by Tiemens et al. on teenage girls with clefts was
disheartening for its documentation of continued problems with
teasing, bullying, and stares, but it was interesting in that the subjects
(N = 7) worked at ways to reduce the impact of social stigma through
coping strategies and social supports and by seeking further
reconstructive surgery. Although the small number of subjects in this
study limits the impact of the conclusions, this report offers a hopeful
note that teens are learning to handle their challenges.
Teenagers' satisfaction with speech also plays a role in overall
satisfaction with treatment (Havstam et al., 2008; Hunt et al., 2007;
Richman and Millard, 1997). Havstam et al. (2011) interviewed adults
with clefts in their 20s and 30s to learn what strategies they used as
teenagers to cope with the social results of less than normal speech.
Many of their responses would qualify as forms of withdrawal. It is no
surprise that, in the 2012 study by Dzioba et al., adolescents with clefts
who exhibited VPI in speech also exhibited more communication
apprehension than did youngsters without VPI. It is safe to assume that
dissatisfaction with their own speech contributes to a tendency toward
social withdrawal in many youngsters.
In terms of coping strategies, patient groups who self-report the use
of “approach-oriented” rather than “avoidance-oriented” strategies in
social contacts seem to do beer in psychosocial adjustment (Baker et
al., 2009). The same finding is true both in parents of children with clefts
and in teenagers with clefts. In the study by Baker et al. (2009), negative
outcomes both in parents of children with clefts and in teenagers with
clefts were not high, and the participants reported high levels of social
support. The outcome equation seems to be “approach strategy” + high
levels of social support = lower psychological stress and beer
adjustment.
Two other reports demonstrate that more work remains to be done in
launching teenagers with clefts successfully in life. Snyder and Pope
(2011) conducted a retrospective chart review on a large group of
children 2 years to 18 years old who had a variety of craniofacial
anomalies, including 144 individuals with cleft lip, cleft palate, or both.
The behavioral data came from a behavioral checklist filled out by the
parents, guardians, or a close family member. The group with cleft lip
and palate showed elevations in social problems and deficits in social,
academic, and activity competencies. A later report of 511 adolescents
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with clefts in Sweden (Persson et al., 2012) found that these teens had
significant deficits in their educational achievements in comparison
with unaffected peers. Their grade-point averages were lower, and they
had higher odds of not graduating.
The results were reminiscent of a very old study by Demb and Ruess
(1967) on high-school dropout rates in teenagers with clefts in the
Chicago metropolitan area.
It is a lile more encouraging that Hall et al. (2013), in interviews and
autobiographies elicited from 17 youngsters with clefts who were 8 to
17 years old, found that those youngsters tended to reflect on how they
“just got on” with their lives and felt that their treatment procedures
did not particularly affect them. These observations reflect resilience,
something that psychologists want to see in young people with clefts.
Adults
It is unlikely that many SLPs functioning outside a craniofacial team
will encounter adults with clefts. This section is offered only in the
interest of providing a perspective. Strauss (2005) stressed the need for
teenagers and adults with clefts to have social support systems and
social interactions. Based on the literature and from what he himself
learned in interviewing patients, he also stressed the need for good
outlets for talking to others and for “unconditional conversations” with
people who accept the individual for exactly who he or she is.
Mani et al. (2010) studied 86 Swedish adults with repaired unilateral
cleft lip and palate and found lower than normal values on a self-report
mental health scale. Men were affected more negatively by their clefts
than were women in terms of emotional function in daily life. Younger
adults (ages 20 to 32 years) were more negatively affected than older
adults (ages 33 to 47 years) on several of the sub-subscales (social
function, physical aspects, emotional aspects, mental health, vitality,
bodily pain, general health) of a questionnaire assessing health-related
quality of life.
In a study of French adults with repaired clefts, Danino et al. (2005)
found a significant delay in educational achievement and in living on
their own. Income levels were substantially lower in comparison to a
control group. These investigators concluded that the patients with
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clefts, as a group, had a significant delay in the process of becoming
independent.
It should be noted that, in the 1997 study by Thomas et al.,
satisfaction in facial appearance was lower in teenagers (age 10 to 15
years) than in individuals older than 20 years, possibly reflecting an
effect of maturation. However, Cheung et al. (2007) found exactly the
opposite: individuals with clefts who were between 10 and 16 years of
age showed higher self-esteem than did individuals 17 to 40 years old. It
is tempting to wonder whether the younger group had beer moral
support and interventional counseling or more advanced treatment (or
both) than the older group.
The subject groups in the neuroimaging studies of Nopoulos et al.
(Nopoulos et al., 2000, 2001, 2002, 2005, 2007; Richman and Nopoulos,
2009) consisted primarily of adult men. However, it is important to note
that we do not yet know the true significance of their findings in terms
of emotional health or functional abilities. It is difficult to obtain data on
adults with clefts because once treatment is completed these patients
move on with their lives, often literally, so they are no longer accessible
to the team. Of course, these patients may not want continuing
aention, in any form. It should help that support groups have
flourished in the United States and other countries, to the extent that
any adult with a repaired cleft or other craniofacial anomaly should be
able to find other adults to talk to about it. Again, a primary source for
finding support groups is the Cleft Palate Foundation (1-800-24CLEFT).
However, as was discussed in the section on early parent support, the
onslaught of online social media has opened a new world of contact for
teenagers and adults with clefts (and everybody else).
Summary for Speech-Language Pathologists
SLPs are intricately involved in the detection of developmental
problems in youngsters with clefts and are also often involved in
counseling of parents both prenatally and for early parent-infant issues
such as feeding. They stay “on duty” as the child progresses through
infancy and toddlerhood and intervene in a timely fashion when delays
in communication development are detected. This remains the case
throughout childhood and the teenage years. SLPs, along with the
classroom teacher, will know when behavior problems emerge. Quite
often, it is the SLP who first detects either a functional problem or a
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previously unsuspected physical finding (e.g., submucous cleft). SLPs
cannot underestimate their role in successfully launching a child with a
cleft toward a happy adulthood.
It should be emphasized that, despite all the possible threats to a
healthy emotional and functional life discussed earlier, most children
with clefts are more similar to their peers than they are different. For the
most part, the child with a cleft is just like the child next to him who
does not have a cleft. If the structural brain differences revealed in some
individuals with clefts in the studies of Nopoulos et al. were
consistently affecting development, we would be seeing far more
language problems and behavioral manifestations in children and
adolescents than we do.
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Berger ZE, Dalton LJ. Coping with a cleft: psychosocial
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