Through the Glass Darkly: Deaf Children From Non-English Speaking Background Families

DEMOGRAPHICS

Estimates of the prevalence of hearing impairment in children have ranged from 4.8 to over 300 per 100,00 live births, depending on the severity and type of hearing impairment reviewed [1]. Higher reported rates have included all children regardless of level, duration or nature of their hearing impairment whereas lower estimates have usually included only the children with more severe hearing impairment. For children born in Australia between 1979 and 1988, 8.1 per 100,000 had an impairment greater than 60dB (for some idea of the significance of this, normal conversation is in the range of 50–60dB) and 34.8 per 100,000 children under seventeen required a hearing aid [2].

There is no current audiological summary data available concerning deaf children from NESB [2]. It is perhaps surprising to learn that Australian Hearing does not collect information on ethnicity from their clients. An ABS Survey of Handicapped Persons in 1981 found that of those identified with hearing loss, 13.5% were born in other English speaking countries and 7.2% were born in non-English speaking countries [3]. Surveys of children fitted with hearing aids carried out by the National Acoustics Laboratory (now renamed Australian Hearing Services), from 1981–83 did note ethnic background and found that 16.2% of the children were listed as having a NESB and 10.4% were listed as speaking a language other than English at home [2]. The most prevalent ethnic backgrounds identified from these surveys were Greek, Italian, Lebanese and Vietnamese.

DEFINITIONS

The term hearing impairment covers such a broad range of conditions that it is impossible to generalise about the psychiatric aspects of hearing impairment as uniform sequelae. Hearing impairment can be viewed as a medical condition and can be classified medically (Table 1). However, the term hearing impairment is viewed by many members of the Deaf community as offensive as they see it to imply that culturally Deaf people are ‘impaired’ hearing people. Sociocultural definitions of deafness, with an emphasis on Deaf individuals constituting a discrete ethno-linguistic group that shares common goals and aspirations are useful in the field of psychiatry and can provide a framework for clinicians to comprehend current and future experiences of the world for the deaf child. For diagnostic purposes, aetiology of deafness is clinically significant, given the increased proportion of psychiatric disorder in children with CNS abnormalities [4].

Approximately 90% of deaf children are born to hearing parents [5] and this paper will mainly focus on issues specific to these children. For clarification, we will use the term deaf to refer to children with a permanent severe or profound hearing impairment and a developing or fixed identification with Deaf culture. The term Deaf will be applied to adults with a clear affiliation to Deaf culture and the Deaf community.

PSYCHIATRY AND CHILDHOOD DEAFNESS

Profound childhood deafness is more than a medical diagnosis; it is a cultural phenomenon in which social, emotional, linguistic, and intellectual patterns and problems are inextricably bound up together [6].

Being deaf can have far-reaching effects on a child's development. Hindley [7] postulates that these effects are determined by the interaction of three factors: the biological concomitants of deafness, the child's response to being deaf and the response of the environment to the presence of a deaf child. The experience of being deaf is different for each child, with differing implications for their psychosocial development and mental health.

In the same way, psychiatric disorders in children are multifactorial in their aetiology, arising out of an interplay of individual and environmental factors. Many aspects that are beyond the scope of this report are also important and worth mentioning in passing when considering the mental health of deaf children. These include the relationship between the aetiology of the deafness and possible brain damage, the incidence of additional disabilities, the nature of language development, the effects of impaired communication on the family, and the abuse of deaf children as well as recent changes in educational practice.

Studies of psychiatric disorder in deaf children have suggested an increased rate of disorder, in comparison to comparable hearing children. These studies have used differing methods to define and investigate their populations (from epidemiological to clinic-based) and estimated prevalence rates have ranged from 15.4% to 54% [7]. Research findings on the range of disorders seen, their presentation in deaf children, and their aetiology also vary greatly. Neither the relative importance of differing aetiological factors, nor the possible mechanisms by which they operate, has been clearly demonstrated, and there are certain methodological problems in all of the studies.

However, the description of deaf children having relatively more behavioural disorders than emotional disorders does predominate the literature. Schlesinger and Meadow [6] and Cole [8] report a three to six times greater incidence than that recorded for hearing children. Deaf children are frequently described as immature, egocentric, impulsive and displaying a rigidity of thought and behaviour. Delays in social and cognitive development due to hearing deficits and impoverished communication at home and school can be seen as contributory factors. It is important to consider that deafness per se does not create fixed pathological deviations in behaviour [9]. One could assume that negative parental and societal reactions to deafness exert a significant impact upon the child's adjustment and development. Methodological problems arise in the above findings, however, as the majority of studies do not include an interview with the child, use behavioural questionnaires that have not been validated for deaf populations (the Rutter A and B scales), and rely heavily on carer's perceptions (and hence possible misperceptions) in assessment. The lack of an interview with the child alone has been cited as a main reason for the under-reporting of affective disorders in studies of deaf children [5].

A study by Hindley et al. in 1993 [7], using psychiatric screening questionnaires specifically for deaf children and adolescents (Achenbach, and Parent and Teaching checklists) and comparing deaf children attending a residential Deaf school with those in hearing-impaired units at mainstream schools, found that, apart from a paucity of depressive disorders and an excess of social phobias, the range of disorders was similar to comparable hearing groups, though the higher overall prevalence supports previous results. Interestingly, the rate of disorder in the population attending mainstream schools was almost double that of the Deaf group and impaired peer relationships in mainstream schools, and the protective effect of positive self-image seen in Deaf schools. Such findings necessarily have implications for the current educational trend to mainstreaming and warrant further study.

To what extent is the higher rate of psychiatric disorder due to the deafness per se or the experiences of the deaf individual? Some evidence for the latter view comes from studies comparing deaf children of Deaf parents with deaf children of hearing parents [10]. Children with Deaf parents were consistently found to have fewer behavioural and emotional problems, less immaturity, and higher scores on self-concept achievement and social functioning scales. Deaf children of Deaf parents also display better impulse control and have higher academic and linguistic competence. Marschark [11] suggests that ‘early parenting that is consistent, rational, and supportive might reduce the likelihood of impulsivity in deaf children’.

It is suggested that some of the factors accounting for these results include the early exposure to sign language and hence early effective communication, and the ‘identity match’ [10], whereby the Deaf parent provides a positive role model and communicates positive feelings about deafness. There are a number of confounding factors when comparing behavioural findings in deaf children. Lesser and Easer [11] state that ‘one cannot adequately evaluate or classify congenitally deaf persons unless one includes the knowledge of the very different developmental and experiential tracks over which these children have advanced.’

Deaf children may adopt a deaf, hearing or dual identity. Meadow et al. [10] and Schlesinger and Meadow [6] have reported poorer outcomes with a hearing identity and better outcomes with a ‘dual’ identity where being deaf is regarded as being bilingual and bicultural. Hindley [7] has explored the process of cross-cultural development in which many deaf children grow from the hearing culture of their parents into the Deaf culture of their peers.

DEAF CHILDREN FROM NON-ENGLISH SPEAKING BACKGROUNDS

Much of the research commented on thus far has studied deaf children and adolescents in Western societies. Little is known about children from other cultures, and what is known is confined to ethnic minorities in Western societies. Hindley [5] reports a demographic trend across many developed countries including the UK and USA, of growing numbers of deaf children from non-English speaking backgrounds. Vostanis et al.'s [12] recent study of prevalence of disorder among primary school deaf children using the CBCL and PCL in the UK is interesting, in that 62% of the sample were deaf children of Asian origin. The study indicated correlations between language use, ethnicity and psychopathology, with higher rates of problem behaviour in children from Asian families. Possible explanations relating to trilingualism and minority cultural beliefs about disability and mental health merit consideration but are outside the scope of this paper. At the time of writing, it is embarrassing to note that figures on this population are not routinely collected in NSW and hence that it cannot be ascertained if Australia shows this trend also. Information to date is reliant on inferences from field anecdotes, as there are no known services specifically established for Deaf people of non-English speaking background.

To what extent is the above research applicable to deaf children of NESB in Australia? Do they face additional difficulties growing up with three cultures and languages — their families, the majority hearing world and the Deaf community? What are these additional difficulties and how may they be prevented? From field anecdotes etc., it certainly seems that all too often the deaf child of NESB with a psychiatric disorder falls into the ‘too hard’ basket with cumbersome assessments requiring two or more interpreters, often resulting in failure for various reasons for appropriate follow-up. No doubt that for every child who presents there are even more children and families in the community who do not access services, for reasons that may include: services that are not culturally appropriate; a lack of education regarding services available; or differing cultural views of mental illness and problematic behaviour.

The family's response to having a deaf child also influences the child's development. This is an especially pertinent issue with regards to children of NESB, as one of the major factors affecting a parent's adaptation to his/her child's deafness is how deafness is construed within that cultural group. In some cultures, attitudes towards ‘disabled children’ are such that having a deaf child is viewed as a tragedy and a stigma.

THEORY OF MIND AND DEAFNESS

To explore the additional difficulties that may beset the deaf child of NESB it is worth exploring the concept ‘theory of mind’. The term ‘theory of mind’ refers to an individual's awareness of human behaviour as being governed by an interconnected network of mental states, including beliefs, desires and feelings [13]. A child's developing theory of mind provides the cornerstone of intellectual and social life, and much provocative research has been done to explore how this development occurs or fails to occur.

Children with autism have great difficulty in tests of their understanding of the consequences of holding a false belief, demonstrating serious delays in theory of mind acquisition [14]. It had been surmised that this was a consequence of a neurological deficit specific to autism, however, Peterson and Siegal [13] found comparable rates of failure by deaf children. This is consistent with the hypothesis that early conversational exposure influences performance on tasks devised to test for theory of mind understanding. Spontaneous communication about intangible thoughts and feelings supplies windows into the mental states of others. If this input is disrupted by the child's deafness and the family's inability to sign, it follows that deaf children in such environments would perform similarly to autistic children. In other words, certain sensory or social handicaps, such as perilingual deafness, at least in certain social environments, may severely curtail the developing child's access to information about other people's mental states. Of note in Peterson and Siegal's work was the one deaf child who succeeded in the predictive behaviour task — a child whose parents were both native signers.

Thus language, thinking and conceptual growth are intimately conjoined. One's language, whether it be oral or visuo-gestural, both shapes and is shaped by our experience of the world. As such, language is both intellectual and social in function. The early conversational transactions between parent and child introduce probing questions such as ‘how?’, ‘why?’ and ‘what if?’, and hence have the power to communicate a sense of causality and logic [15]. Failure to acquire language and the ability to communicate impedes a child's progression from a perceptual to a conceptual world. If communication goes awry, it will affect intellectual growth, social intercourse, language development, and emotional attitudes, all at once and inseparably. This is the danger with a deaf child in a hearing family, as is explored by Schlesinger and Meadow [6] and discussed by Sacks [15]. Numerous studies have shown [11,13] that hearing parents rarely achieve sufficient proficiency in manual communication to converse freely with their children about imaginary, abstract or unobservable topics. Even those hearing mothers who are highly skilled at signing have been shown to confine communication with their deaf children to concrete, visible topics [11]. Indeed, ‘in 90% of cases Auslan is learned not from parents within a family setting, but from other deaf students, usually in school’ [13]. For deaf children, the school setting provides the framework for the transmission of social and cultural mores, which may differ from those of their hearing parents.

Furthermore, once in school and in a signing environment, observational studies of teacher-pupil conversations in Australian Total-Communication classrooms (Sign Language plus spoken English) reveal that conversational exchanges are frequently more restricted than those with a much younger hearing child, and discussions of unobservable mental states much more limited [13]. Thus it can be seen how delayed milestones in language acquisition can occur. One could postulate how this may generalise to other developmental milestones. Learning difficulties at school, educational underachievement and financial loss because of unemployment or low-paid employment are also possible sequelae [1] as well as the psychiatric aspects briefly discussed above.

It can be argued that children of NESB, needing to bridge three languages and three cultures, may be at more risk of developing these sequelae than those deaf children ‘simply’ grappling with a bilingual bicultural identity (a large enough task already!) Firstly, parents who do not speak English are likely to encounter difficulties in obtaining information and support concerning their child's deafness.

There is much anecdotal and scientific evidence to suggest that late identification of deafness is detrimental to a child's development. The importance of early language development as a mediator of experience and cognition is beyond question. For example, comparison of the speech intelligibility of groups of hearing impaired children who commenced using hearing aids in the first six months of life, their second six month and by two and three years of age, showed that the group with hearing aids in the first six months had significantly superior speech intelligibility [1]. There is also some evidence of a critical period of brain development [15] during which the lack of conversational access to other people's mental states, as is possible with deaf children, may result in enduring handicaps in cognition. Indeed Birtle et al. [1] state that the age of identification, rather that the method used to teach language, has been demonstrated to have the greatest impact on all areas of development, including social and emotional development.

Jure et al. [16] found an increased prevalence of autism in deaf and hearing impaired children, yet concluded that hearing impairment was not necessarily an aetiological factor in autism. However, brain dysfunction or damage denote autism and there are a number of conditions which damage both the brain and the ear, such as rubella, congenital cytomeglovirus and CHARGE syndrome [17,18,19]. Jure et al. propose that if deafness and autism are both present, each can confound the diagnosis of the other, resulting in late diagnosis and inappropriate intervention.

CASE VIGNETTE: HL

HL was a two-year-old boy of Chinese descent who was diagnosed as profoundly deaf at thirteen months. His parents spoke little English, requiring an interpreter. Interestingly, the parents spoke different dialects, father speaking Cantonese to his child, and Mandarin to his Mandarin-speaking wife. HL presented for a general assessment at the Deafness Centre of a children's hospital and was developmentally normal for his age with the exception that he rarely uttered any sounds. He was wearing bilateral hearing aids that were persistently whistling [acoustic feedback due to poorly fitting moulds) and his father admitted that HL did not usually wear them, as they made his son look obviously ‘abnormal’. HL's father was very upset and ashamed that his first son was deaf and adamant that HL learn to lipread and be ‘normal’. He would not contemplate his son or himself learning to sign, and in fact had only attended the assessment upon his wife's and the interpreter's coercion.

HL's father's denial and sense of shame regarding his son's deafness has potentially serious ramifications for HL, as perhaps is already indicated by the late diagnosis and infrequent wearing of the (probably ill-fitting) hearing aids. Several authors [7,20] point out that feelings of sadness and depression that may follow the confirmation of deafness will interfere with the interaction between the parent and infant, and that difficulties in communication continue to affect relationships as deaf children develop. Thus it is likely that his family's negative perception of HL's deafness will adversely affect his psychological development and self-concept. Will HL's theory of mind acquisition proceed at a normal rate? Would there be a difference if his parents were more motivated to learn some sign language? In any case, how does a parent who does not speak English learn Auslan with the use of an additional interpreter? A follow-up visit, to which HL's father grudgingly agreed, was arranged and information on a Chinese mothers of deaf children support group was given. It is telling that this group advocates an oral approach only. It is also the only established support group known to the centre for parents from any NESB in NSW. Some studies have suggested that the single most important coping resource for mothers of deaf children is their social support network [5]. With views held by HL's father prevalent across several cultural groups, and very few known support groups in metropolitan Sydney, it is conceivable that the stress of parenting a deaf child from a NESB is quite significant.

Attitudes towards disability can be extended to mental illness in certain cultures. This has consequences for the deaf child from a NESB with such a prevailing view, in terms of identification and access to services for mental health problems. Should HL and his family experience problems in relation to mental health, it is possible that their cultural views of mental illness as a stigma and a shameful problem, for which one does not seek help from ‘strangers’, will result in reticence in accessing services. It must be noted that such views of mental illness are not confined to certain ethnic groups, nor are they necessarily the only view within such groups. This is illustrated by the case of ST below. Her case does highlight the communication problems in a hearing family with a deaf member, that are perhaps exacerbated by an additional language in the home.

CASE VIGNETTE: ST

ST was a 17-year-old female who was profoundly deaf as a result of prematurity. She presented with a long history of persistently depressed mood, with a recent worsening that had been accompanied by suicidal ideation and recent weight loss following an alleged assault. She used Auslan as her mode of communication, but her family, of Cambodian descent, spoke little English and did not sign, with the exception of her younger sister who signed a little. ST did not communicate at all with her father, who did not attend the assessments, and communication with her mother who expressed affection for her, was very limited, and often via her sisters. ST's mother said that she wanted to learn to sign more, but that ST was ashamed to be ‘deaf and dumb’ and did not want her mother to sign to her in public. ST's signing was perhaps illustrative of this, being almost impoverished and one-handed at times, incorporated with say, sweeping her hair from her face. It was as if she was ashamed of her signing.

Her mother believed that ST had been depressed for two years, however, in keeping with the rather stoic Asian way of dealing with mental health (the prevalence of this view being based on anecdotal evidence) had not mentioned anything. There is some evidence that children from Asian families are under-represented in referral to child psychiatry clinics [21]. The authors suggest that this may reflect cultural differences, as is likely, at least in part, with ST's late presentation, although it may represent lower rates of psychiatric disorder.

ST was commenced on antidepressant medication and frequent review arranged. Over the course of several months, ST recovered from her major depressive episode and has established a good therapeutic relationship with her community worker. Confusion did arise over the effect of taking other medications concurrent with an antidepressant, resulting in ST ceasing her medication on her mother's advice. This cessation ‘just to be safe’ may not have occurred had ST's family accessed services for appropriate advice. The extent to which this arose as a result of their NESB is unclear.

DISCUSSION

As outlined above, for a variety of reasons, children from a NESB often do not have ready access to mental health services. More difficulty arises also, in the assessment process and subsequent provision of services, as has already been intimated by the above cases. The interpretation from one language to another entails more than just the translation of words, and psychiatry involves the interpretation of both behaviour and words. Being deaf has been likened to ‘having a thick pane of glass between oneself and the world’ [22]. It can be argued that being deaf and from a NESB can double this glass thickness, and perhaps distort views from both sides even more, as interpretation across three languages may result in a ‘Chinese whispers’ effect.

Sign language interpreters in Australia provide services for Deaf people who use Auslan and for hearing people who use English. Contrary to popular belief, there is no universal sign language, but like spoken languages, each cultural group has its own sign language. Thus a trained Auslan interpreter, while recognising certain iconic signs, would have difficulty interpreting Cambodian Sign Language, not least due to syntactical differences between the two languages. This certainly has ramifications in the field of mental health, as it is often the nuances and subtexts that aid the diagnosis. The need for two interpreters at an assessment necessarily places a larger burden on the health system, and can, in some instances render the assessment process too difficult for the client and the service to pursue. ‘Project Knock Knock’, a profile of the Deaf community by the Deaf Society of NSW [3] has identified this as an area warranting further investigation.

Unfortunately the scope and breadth of this paper does not enable us to further explore the issues related to the delivery of mental health services for deaf children from a NESB, their cultural-appropriateness and so forth. Needless to say, deaf children from NESB are vulnerable to mental health problems given the additional difficulties they face in bridging three cultures and three languages, and should these arise, are less likely to be provided with the assessment and support that they and their family require. This occurs for a variety of reasons, some of which have been briefly discussed above. Cultural minorities, given their heterogeneity, their cultural views of mental health, and other factors, do not have a collective ‘voice’ to lobby for improved mental health access and delivery but, as is hopefully illustrated by the evidence above, there is a case for further research into issues surrounding deaf children from NESB.