The Hearing or Visually Impaired Child
Peter Hindley
Alison Salt
Models of Deafness, Visual Impairment, and Deaf-Blindness: Culture and Disability
Deafness and severe visual impairment (SVI) are low-incidence conditions which, alone and in combination, can have a significant effect on a child’s development and mental wellbeing. Less severe degrees of hearing and visual impairment are more common but have a less significant impact on child development. This chapter provides an overview of hearing and visual impairment and a more detailed account of deaf, SVI, and deaf-blind children’s development and mental health. Two Web sites (www.raisingdeafkids.org and www.boystownhospital.org) provide an overview of deafness and an online research facility. The American Federation for the Blind website (www.afb.org) is a useful source of information as well.
The sensory impairments can be defined in a variety of ways. Two key models are used, medical and cultural. Medical definitions of sensory impairments focus on the severity of impairment, the site and type of impairment, the age of onset of the impairment and the presence or absence of additional disabilities. The cultural model of sensory impairment challenges the notion that a deaf or visually impaired person is disabled. Cultural models focus on the social experience of deafness or blindness and the strengths of deaf and blind communities and individuals (Table 1.7.2.1).
Being a deaf, SVI, or deaf-blind young person does not necessarily increase the risk of developing mental health problems. Three sets of factors, which are linked to sensory impairments, do. First are the consequences of being deaf,
SVI, or deaf-blind in a world which is oriented to the needs of hearing and sighted people. The goodness or poorness of fit between the needs of sensorially impaired children and their environment has an impact from early in the child’s life—in particular, since the vast majority of deaf and SVI children are born into hearing and sighted families, how the family adjusts to the needs of their deaf or SVI child. Second, brain insults and other physical illnesses linked to the cause of deafness or blindness may confer additional neuropsychological vulnerabilities. Third, children with sensory impairments are more vulnerable to all forms of abuse and neglect.
SVI, or deaf-blind in a world which is oriented to the needs of hearing and sighted people. The goodness or poorness of fit between the needs of sensorially impaired children and their environment has an impact from early in the child’s life—in particular, since the vast majority of deaf and SVI children are born into hearing and sighted families, how the family adjusts to the needs of their deaf or SVI child. Second, brain insults and other physical illnesses linked to the cause of deafness or blindness may confer additional neuropsychological vulnerabilities. Third, children with sensory impairments are more vulnerable to all forms of abuse and neglect.
TABLE 1.7.2.1 DEFINITIONS OF SENSORY IMPAIRMENT | ||||||||||||||||||
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Deaf, Hard of Hearing and Hearing-Impaired Children
Epidemiology and Etiology of Hearing Impairment
Hearing impairment affects approximately 17/1,000 children under the age of 18 in the United States (1). The most common forms of hearing loss are those resulting from middle ear effusions, although these are often time limited. It is not always possible to establish the age of onset of hearing impairment, but among children with permanent hearing impairment just under 60% have congenital hearing loss and approximately 25% acquired hearing loss (2). Genetic causes are the most common causes of permanent sensorineural hearing loss, followed by the complications of severe prematurity and intrauterine and postnatal infections (Table 1.7.2.2).
Otitis Media with Effusion, Unilateral Deafness, and Hard of Hearing Children
Acute otitis media (AOM) affects about 2/3 of children in the age range 6–24 months. AOM is very uncommon after 6 years of age. About 45% of children with AOM have a middle ear effusion (MEE) one month after an episode of AOM and approximately 10% have one three months after an episode of AOM. MEE can cause hearing loss, and where this is greater than 20 dB loss, surgical insertion of PEC tubes is indicated. Chronic MEE with hearing impairment can cause language delay in children (www.e-medicine.com). Unilateral deafness affects approximately 1/1,000 live births (3), of which approximately 35% have profound unilateral hearing impairment. Hearing impairment as a result of MEE and as a result of unilateral sensorineural deafness can cause significant difficulties for the child in the classroom and in conversational settings. Common effects of these forms of hearing impairment include: localization of sound; understanding what people say when there is other noise at the same time; paying attention in class; following directions in class; and learning new concepts. The possibility of an undetected hearing impairment should always be considered in children referred for attention problems.
Children with moderate to severe hearing impairment need an initial multidisciplinary assessment by audiologists, pediatricians, speech and language therapists, teachers of the deaf, and where appropriate, geneticists. The main intervention for these children will be the provision of hearing aids with support from teachers of the deaf to ensure that classroom provision and teaching practice meet the individual child’s needs. Hearing aids amplify the sound being transmitted to the middle ear. Digital hearing aids allow specific adjustments to be made to improve comfort and amplify specific frequencies, but they need careful fitting (4).
Despite their advantages, digital hearing aid users still face a variety of problems. Children can still experience excessive amplification of background noise, which makes noisy environments particularly difficult. Recruitment, perceiving greater increases in sound loudness than would be expected (e.g., a sound at 70 dB is tolerable but intolerable at 110 dB), can cause pain and distress. Finally, acoustic feedback, leading to high-pitched whistling, can occur if hearing aids are not fitting properly. This is a particular problem for young children who are growing rapidly.
The majority of hard of hearing children who have received appropriate audiological and educational intervention will develop effective spoken language. They are likely to experience a degree of language delay and may have pragmatic and syntactic deficits. This is also true of many, but not all, deaf children who receive early (i.e., before two years) cochlear implantation (see below).
TABLE 1.7.2.2 PREVALENCE AND ETIOLOGY OF SENSORY IMPAIRMENT | ||||||||||||||||||||||||||||||||||||||||||||||||||||
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Cultural Aspects of Deafness
There are historical references to deaf people and the use of sign language dating back to the classical period (5), but the modern study of the cultural aspects of deafness began in the 1960s with Bob Stokoe’s (6) studies of American Sign Language (ASL). The Deaf community came to be defined by a series of key experiences. Central among these were the use of sign language, experiencing the world visually and the experience of oppression by the majority culture (7). More recent studies have suggested that the types of community that emerge, e.g., distinct and separate deaf communities, merged communities of deaf and hearing people, or single deaf people within hearing communities, depend in part on the attitude of the majority hearing community toward deafness (4). Majority communities can be seen on a continuum. At one end are those that make no distinction between the role and function of deaf and hearing people, so-called assimilating communities. These tend to occur in rural communities and lead to merged communities of deaf and hearing people, such as the community described in nineteenth century Martha’s Vineyard (8). At the other end of the continuum are communities in which the role and function of deaf people is significantly restricted and their cultural practices, such as the use of sign language, are suppressed. These are so called oppositional communities. Most industrial communities of the nineteenth and twentieth century shared these characteristics and lead to the distinct deaf communities described by Meadow-Orlans and Erting.
A key feature of oppositional deaf communities is cultural discontinuity; 90–95% of deaf children are born into hearing families (deaf children of hearing parents [DOH]), the vast majority with no previous experience of deafness (9). Approximately 90% of deaf parents have hearing children (10). Historically DOH children joined the deaf community through key experiences such as attending residential schools and joining deaf clubs. Changes in education legislation and practice have lead to the vast majority of American deaf children being educated in mainstream classes or special education classes in mainstream schools. Early intervention and cochlear implants are changing the experiences of deaf children and their hearing families. At the same time, fewer deaf people seem to be active in formal social organizations such as deaf clubs and changes in communication technology (email, close captioning and video-telephony) are making communication much easier.
Sign Languages
Sign languages are naturally occurring languages that develop whenever significant numbers of deaf people come together (11). In the Western world, prior to formal education, this occurred in areas with high rates of congenital deafness, such as Martha’s Vineyard. This continues to happen in parts of the developing world, such as Yucatan (4). Formal education of deaf children began in Europe in the sixteenth and seventeenth centuries and was first established in the United States in 1817.
The American founders of deaf education brought French teachers of the deaf from Paris. American Sign Language (ASL) origins appear to be in Langue des Signes Française, the native sign language of Martha’s Vineyard and the sign language of North American Indians (Sherman and Wilcox 2003). There are strong linguistic and neurological arguments to support the contention that language originally emerged from early gesture and that sign language antedates spoken language (11).
ASL, like other natural sign languages, differs both syntactically and lexically from spoken English. Fischer and Huslt (12) provide a comprehensive overview of the structure of ASL. ASL uses movements and shapes of both hands, facial expression, eye gaze, and upper body movements to convey both lexical and syntactic features. Spoken languages, except for tonal languages, tend to rely on sequences of sounds to convey meaning. In contrast, sign languages can present information
simultaneously, e.g., two hands, facial expression, body movement, and eye gaze can all change simultaneously. ASL has been adapted to accommodate syntactic and lexical aspects of spoken English as Manually Coded English (MCE). These artificial pidgins tend to be both less efficient and less flexible than either spoken English or ASL.
simultaneously, e.g., two hands, facial expression, body movement, and eye gaze can all change simultaneously. ASL has been adapted to accommodate syntactic and lexical aspects of spoken English as Manually Coded English (MCE). These artificial pidgins tend to be both less efficient and less flexible than either spoken English or ASL.
The evidence from lesion studies and functional scanning studies suggest that native signers (deaf and hearing), in the main, use the same areas of the brain that hearing people do when they use spoken language (13). Deaf children of deaf parents (DOD) who are exposed to ASL from birth develop ASL at the same rate that hearing children develop spoken language (14). Features of early language similar to those seen in spoken language, such as manual babbling, have all been observed in DOD infants (14). Hearing infants are able to divide their auditory and visual attention so that they can listen to their caregivers and attend to play activities. This is not possible for deaf infants, who have to divide their attention within the visual channel. Deaf parents use a variety of approaches to manage this task, such as signing onto the infant’s body and bringing objects into the infant’s visual field (15). In broad terms, DOD children’s social and emotional development follows milestones similar to hearing children (16), and their academic and vocational outcomes tend to be better than DOH children.
Development of DOH Children
The causes of the differences in development between DOD and DOH children can be understood in a number of ways—first, the effect of the diagnosis of deafness on family relationships. Prior to the introduction of universal neonatal screening, most deaf children would not have been diagnosed until at least six months of age, although for some it was considerably later. This period of time gave parents the opportunity to adapt intuitively to their deaf child’s needs. For the vast majority, the diagnosis of deafness came as a shock with accompanying feelings of loss and anger (17). The majority of hearing parents appear to make a good adjustment, but for those who have difficulty in accepting their child’s deafness there appears to be an increased risk of an insecure attachment relationship developing. Second, the “goodness of fit” between the child and their parents (18) can be considered in terms of the transaction between the child’s temperamental style, the parenting style, and their external resource. These factors are important for deaf children, but in addition we need to consider goodness of fit of communication. The majority of deaf children will need some form of signed communication, but not all parents will wish to use and may be advised not to use sign language. Lack of access to early language is probably the single most important developmental risk factor for DOH children.
However, this picture has been significantly affected by three recent changes in the management of deafness: the introduction of universal neonatal hearing screening or UNHS (19); the development of early intervention programs linked to UNHS programs (20); and the increasing use of cochlear implants with deaf infants (4,21).
Neonatal Screening and Early Intervention
UNHS programs generally use a two-stage approach to screening for hearing loss. Evoked otoacoustic emissions (EOAE) or automated ABR (see below) is used in newborn infants to ascertain those as risk of hearing loss. EOAE detects the signal generated by the hair cells in response to sound. Both EOAE and automated ABR have false positive rates of approximately 20% (19). All infants screened positive by EOAE or automated ABR are tested using a diagnostic auditory brainstem response. ABR tests the auditory systems response up to the nuclei and neural pathways of the brainstem to confirm bilateral deafness of moderate or greater severity (>40 dB in the better ear). UNHS will not ascertain all children with early onset deafness. Children with auditory neuropathy, cortical deafness, and children with progressive deafness may not be detected and so ongoing surveillance is needed.
UNHS programs have been advocated because research has found that deaf children receiving intervention before six months show significant gains in language development, both spoken and signed, when compared with children receiving intervention after six months (20). One of the problems in the United States has been that these post-diagnosis interventions have not been provided consistently (19). The programs with the best outcomes, such as the Colorado Hearing Impaired Program or CHIPS, provide a range of interventions. Parents are provided with early psychological support to adjust to the diagnosis and to make decisions about which language, signed or spoken, they plan to use with their child. Language interventions are provided in parents’ homes and parents also have access to parent groups and deaf mentors.
Cochlear implants (4,21) are sophisticated hearing aids which allow an electronic signal to be delivered directly to the cochlea, thereby avoiding all of the problems of amplification associated with conventional aids. Implantation involves neurosurgery, which is generally safe but has rare, serious, and extremely infrequently fatal side effects. They are generally most effective in the earliest years of life and can lead to profoundly deaf children functioning as a severely deaf child. They are not universally effective. There was considerable controversy within the deaf community when cochlear implants were first used with deaf children, as they were seen as a potential threat to the community. This controversy has lessened with time and ongoing debate.
Social and Emotional Development
Most hearing parents adapt successfully to the needs of their deaf infant (18). However, for many the presence of a deaf infant leads to higher levels of stress, both in terms of daily hassles, additional financial burdens, and reduced social networks. In families where parents have difficulties in accepting their deaf infant, insecure attachment relationships are more likely to emerge. When there is poor matching of communication needs between the deaf infant and their hearing parents, less mutually satisfying interaction will occur and more directive parental styles can develop.
Most deaf children in the United States are educated in some form of integrated setting (22). Studies of peer interactions of deaf children tend to focus on the early years (23). The findings from these studies are not wholly consistent but suggest that deaf children tend to interact less than hearing children. They tend to interact more with other deaf children, but interactions with hearing peers occurs more often if the peer is familiar to them. Deaf children show more social interaction and more cooperative play the more well developed language they have. Generally deaf children tend to show less symbolic play and less sophisticated interaction skills than hearing peers. These difficulties in interaction, both in the family setting and in early education, have an impact on deaf children’s social and emotional development. They are more likely to show delays in development of theory of mind (24), and to have a more limited emotional vocabulary and social understanding (25). It is important to point out that this does not affect all DOH children. Those that have developed early language and experienced positive peer relationships may show none of these delays. However, all deaf children experience difficulty in accessing incidental learning
(the everyday learning that naturally occurs when children interact spontaneously with their social environments) and many deaf adolescents in integrated settings describe significant difficulties in peer relationships (26). School-based interventions aimed at promoting deaf children’s social and emotional functioning are crucial to preventing mental health problems (25).
(the everyday learning that naturally occurs when children interact spontaneously with their social environments) and many deaf adolescents in integrated settings describe significant difficulties in peer relationships (26). School-based interventions aimed at promoting deaf children’s social and emotional functioning are crucial to preventing mental health problems (25).
Deaf children who have been raised in standard early intervention and educational settings are at higher risk of significant reading and writing delays. These delays, linked in turn to difficulties in accessing incidental learning, may account for the significant academic underachievement still seen in many deaf children (27). Finally deaf children, like many children with disabilities, are at greater risk of all forms of abuse. In some residential deaf schools this abuse has become transgenerational (28).
Deaf-Blind Children
Best (29) estimated that 0.01/1,000 children are deaf-blind, but this is likely to be an underestimate. In the past, congenital rubella has accounted for a third to a half of cases (30) but this has fallen as a result of universal rubella immunization in many countries. Genetic conditions such as Usher syndrome and brain abnormalities associated with severe prematurity are now likely to account for the majority. Approximately 3–6% of deaf and hard of hearing children have Usher’s syndrome (1). Additional impairments are very common, with intellectual impairment in a third to a half, and brain abnormalities in a quarter (30).
Deaf-blindness is one of the most devastating (31) and least understood (32) of handicapping conditions. Its impact on children and their families is influenced by the severity of the sensory impairments and the nature and severity of associated impairments (33). Responses to sensory losses may include feelings of anxiety, isolation, denial, resentment, or distortion of body image. The parents of deaf-blind children have to make major adaptations. In the case of Usher syndrome, many parents appear devastated and unable to imagine their child’s future when they are informed that their already deaf child may well go progressively blind (34).
Cultural Aspects
In areas where there is high incidence of Usher syndrome, such as in the Cajun community of LA, deaf-blind communities have formed. A similar community has formed in Seattle, WA, primarily through migration. Miner (35) provides guidance on therapeutic techniques when working with deaf-blind people [see also the deaf-blind Website (36)]. Differential diagnostic problems for deaf-blind children are similar to those of deaf and SVI children. It can be particularly difficult to differentiate between complex neuropsychiatric conditions such as autism and the social and emotional consequences of dual sensory impairments.
Psychiatric Aspects of Deafness
Most studies have shown that the rate of psychopathology is increased in deaf and HOH children (hereon called deaf children) compared with the general population, although the majority do not have a mental disorder (37). However, comparisons across studies are difficult because of differences in methodology. Only four studies have used information from teachers and parents, including parental interviews (38,39,40,41). Of these, only the last two included interviews with young people. These studies showed increased rates of emotional and behavioral disorders (Table 1.7.2.3).
TABLE 1.7.2.3 PREVALENCE AND ETIOLOGY OF MENTAL HEALTH PROBLEMS IN DEAF, VI, AND DEAF-BLIND CHILDREN | ||||||||||
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The range of psychiatric disorders is, in the main, the same as in hearing children (40) but deaf children are exposed to a range of additional risk factors (37,40). Pervasive developmental disorders are more common among deaf children (see below). It is not clear whether or not children in mainstream or special schools are at higher risk of mental health problems. Smith and Sharp (42) found that deaf children in mainstream schools were particularly likely to be bullied. On the other hand, deaf children in residential schools appear to be more vulnerable to abuse (28).
Psychiatric Assessment
Deaf children rely on visual communication. When interviewing them, the room needs to be uncluttered and well lit but without a bright light, such as a window behind the interviewer. Lipreading requires a clear view of the lips, and bushy beards and mustaches can cause problems. No more than 25% of spoken language is seen through lip patterns alone (43). Deaf people have to make educated guesses when lipreading (44), and a strong foreign accent can make that more difficult.
When clinicians have limited signing skills, their efforts to engage signing deaf children can blunt their capacity to detect subtle emotional signals, thereby missing emotional disorders (45). In these circumstances it is better to engage a professional sign language interpreter, preferably with experience in child mental health and with an opportunity to meet the child prior to the interview and for debriefing afterward. This is particularly important because the interpreter will have the child’s eye contact and may have picked up subtle emotional cues (46). The coexistence of deafness and psychiatric disorder can lead clinicians to an unwarranted assumption
that deafness explains all—the phenomenon of “diagnostic shadowing” (47).
that deafness explains all—the phenomenon of “diagnostic shadowing” (47).
Psychological Assessments
Caution is needed in interpreting psychological test findings in deaf children, because most tests have been validated exclusively in hearing populations. A knowledge of developmental and cultural aspects of deafness is essential (48).
Disruptive Behavior
The overrepresentation of deaf children with disruptive behavior among those referred to clinics may partially reflect referral patterns. However, there may be associations with brain pathology that occur with some types of deafness (49). In a longitudinal study of children affected by congenital rubella, Chess and Fernandez (50,51) found that early impulsiveness in those with deafness alone disappeared as the children acquired language and self-control skills. By contrast, impulsiveness persisted in deaf children with additional impairments. Oppositional behavior can be an expression of underlying feelings of impotence, anxiety, or sadness, or an expression of frustration with difficulties of communication (49). Symptoms of distractibility and overactivity may reflect a distracting visual environment or poor language matching in the classroom, leading to boredom or to undetected intellectual or language impairments, or seizure disorders or the side effects of drugs (49).
Emotional Disorders
The underrepresentation of emotional disorders in deaf children seen in the specialist services runs counter to the epidemiological evidence. Using the CBCL, van Eldik (52) found significantly higher scores on the anxious/depressive scale among deaf teenagers than among hearing peers. Emotional problems may be missed because poor signing skills prevent parents and teachers from recognizing mood disturbance.
Related posts:
Child and Family Policy: A Role for Child Psychiatry and Allied Disciplines
Oppositional Defiant and Conduct Disorders
Interpersonal Psychotherapy
Evidence-Based Practice as a Conceptual Framework
Suicidal Behavior in Children and Adolescents: Causes and Management
Integrating Behavioral Services into Pediatric Care Settings: Principles and Models
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