Children and Adolescents Referred to a Specialist Gender Identity Development Service: Clinical Features and Demographic Characteristics

By Domenico Di Ceglie, David Freedman, Susan McPherson and Philip Richardson

Citation: Di Ceglie D,  Freedman D, Mc Pherson S, Richardson P. (2002) Children and Adolescents Referred to a Specialist Gender Identity Development Service: Clinical Features and Demographic Characteristics. IJT 6,1, http://www.symposion.com/ijt/ijtvo06no01_01.htm

• Abstract
• Keywords
• Introduction
• Methods an Aims
• Results
• Discussion
• Conclusions
• References

Abstract:

This paper presents findings of a detailed service audit of cases seen at a specialist service for children and adolescents with gender identity disorders. The audit looked at clinical features, associated features, demographic characteristics and complexity of the cases. Data were extracted from patient files of the first 124 cases seen by the service. Clinical features were assessed based on DSM-IV criteria (American Psychiatric Association, 1994) and associated features were based on the clinical features list of the Association of Child Psychology and Psychiatry (ACPP) data set (Berger et al., 1993). A range of results is presented documenting the occurrence and frequency of different clinical features at different ages. These include the finding that stereotypically gendered clothing (i.e. boys cross-dressing and girls refusing to wear skirts) is more significant in pre-pubertal children, whereas dislike of bodily sexual characteristics becomes more predominant in post-pubertal children. The most common associated features were relationship difficulty with parents/carers (57%), relationship difficulty with peers (52%) and depression/misery (42%). Gender identity problems have wide-reaching implications for children and their families and problems may become more entrenched with the onset of puberty. Although specialist support and co-ordination of services becomes essential particularly at this time, interventions in childhood may have the function of preventing difficulties becoming more severe during adolescence.

Keywords: Gender Disorder, Children, Psychopathology, Socio-demographic data, adolescents.

Introduction

The experience of gender identity disorders in children, and particularly adolescents, creates considerable problems for them, their families and their social environment. There is still uncertainty as to the aetiology of this condition. However, a multi-factorial model including biological, psychological and social factors is commonly supported (e.g. Coates et al., 1991; Money, 1994; Zucker and Bradley, 1995; Di Ceglie, 1998).

A multidisciplinary service led by the first author was established at St. George's Hospital in south London in 1989, which transferred to the Portman Clinic in north London in 1996. The team includes contributions from child and adolescent psychiatry, clinical psychology, psychotherapy, social work and paediatric endocrinology. The therapeutic model developed and currently used by the service is described in detail by Di Ceglie (1998).

Given the small number of cases existing in the UK there has been little documentation of the characteristics of this clinical group. In this specialist service a sufficiently large number of cases had now been seen to warrant a general audit of the cases attending for consultation. This paper reports some initial findings from an audit that was undertaken of the first 124 cases seen by the service since 1989. Previous research in the USA, mainly on biological boys, shows that gender identity disorders rarely manifest themselves in a pure form, but are usually associated with behavioural difficulties, difficulties in relationships with peers and parents, and most notably separation anxiety disorder (Coates and Person, 1985; Zucker, 1998). Both studies used the Child Behavior Check List (CBCL) (Achenbach et al., 1991) to measure the associated difficulties.

Cohen-Kettenis et al. (1998) assessed the psychological functioning of 65 adolescents with gender identity disorders. They divided them into two sub-groups: the first group consisted of adolescents with severe gender identity disorders and the second group with atypical or less severe identity disorders. They used two self-report questionnaires: the Dutch Personality Inventory and the shortened Dutch version of the MMPI (Minnesota Multiphasic Personality Inventory). They found that the first group scored in the high range for somatisation and psychopathology, and in the average range for the other subscales of the Dutch version of the MMPI. The second group scored significantly higher than the first group in shyness and psychopathology; none of the mean scores of this group were in the 'average' range.

The study reported in the present paper seeks to investigate further the demographic and associated psychopathology of children and adolescents referred to a London-based gender identity clinic.

Methods and Aims

This service audit aimed to establish detailed profiles of cases seen by the specialist service in the UK. As well as looking at the diagnostic criteria for gender identity disorder, which are the distinguishing features of the disorder, the audit also aimed to establish a profile of the social and demographic characteristics of the children and adolescents referred to the service, the source of referral and the associated clinical features. These data provide a broad description of the main characteristics based on the analysis of the case notes and could be used to establish the needs of this group of children and adolescents in order to improve service delivery, and to inform the planning of further prospective research. Four sets of data were collected from each case file: socio-demographic data, clinical features, associated clinical features and case complexity.

Socio-demographic data

These included (where available): information at the time of referral; age and biological sex of patient, occupation of referrer and referral agency, constitution of family of origin at time of referral and at discharge, history of living arrangements and domestic situation at discharge, education history, type of educational establishment or occupation at discharge, and ethnic group.

Clinical features

Various approaches to the definition of gender identity disorder in children and adolescents have been developed. Di Ceglie (1995) describes four different sets of diagnostic criteria (Stoller, 1968; Rosen et al., 1977; DSM-IV [American Psychiatric Association, 1994]; ICD-10 [World Health Organisation, 1996]). The criteria for assessing clinical features used in this audit are derived from DSM-IV as this offers the most comprehensive description of problems and diagnostic criteria. However, DSM-IV is not designed for use as a checklist of features. The criteria set out were therefore adapted to a checklist format by breaking down the fairly descriptive, discursive format of DSM-IV into more specific items. Table 1 sets out the criteria used and their derivations.

Table 1. DSM-IV criteria and derived Clinical Features Criteria

Associated clinical features

The audit used a tailored version of the clinical features list from the ACPP data set (Berger et al., 1993) to collect information on the associated clinical features. This is a problem checklist rather than a validated measurement tool and it was designed to cover the widest possible range of potential presenting problems. It was intended to be adaptable to individual services by adding appropriate additional features or removing inappropriate ones. For this study most of the items relating to gender and sexual disorders were removed as these were more fully covered by the clinical features checklist. Some items were added which were felt to be clinically important such as a more comprehensive list of social/relationship problems and more items relating to context such as 'family physical health problems'. The use of the CBCL would not have been appropriate as it is a measure designed for rating by parents or teachers. It is also a validated outcome measurement tool designed for prospective use, whereas our study was a retrospective analysis of case-notes which the clinical features list more readily suited. The clinical features were not assigned a severity rating in this audit as this could not have been done reliably from case notes. Therefore, only the presence or absence of a feature was noted.

Case complexity

Case complexity assessment was based on Pearce's scale (Pearce, personal communication, 1994). This scoring system enabled us to measure quantitatively the complexity of the problems presented to the service. The scale has 6 items which each score 0, 1 or 2. The item 'Unsuccessful professional treatment for same disorder' was excluded, as this was judged to be unascertainable in this sample. The total score was therefore out of 10, with items on degree of comorbidity, including physical disorders; number of psychosocial problems; legal issues likely to have an adverse effect on the child; number of other agencies actively dealing with the child or family; and number of areas of life affected by disability, for example, relationships, learning, physical activity, etc.

Criteria and process of data extraction

The data were collected from the case notes of the first 124 children and adolescents referred to the service since 1989. Excluded from the audit were the children referred to the service for counselling in relation to a parent with a gender identity disorder.

A list of the data items to be collected from the files was agreed by the authors. Data were collected by D.F. (research consultant at the GID clinic) and S.M. (research psychologist and clinical auditor). The criteria for extracting and scoring information were discussed at length and agreed on by the data collectors. The case files were searched in a systematic way for each item of data, and as the information was found it was recorded. Files were shared between the two data collectors, but data extraction was always carried out together to allow continual cross-checking of criteria and discussion of difficult points. Neither of the data collectors knew any of the patients or their families, but in some cases it was necessary to refer to a clinician who knew the patient to clarify information. In general, no inference was made about the presence or absence of a feature from indirect information; data were only recorded when they were clearly identifiable in the file. S.M. carried out extensive cleaning and screening of the data on Excel and on conversion to SPSS and re-audited any files where any inconsistencies or anomalies were found.

Results

The data were analysed in terms of biological sex and age (under 12 years vs. 12 years and over). This division was made as a rough approximation of the time of transition from pre-pubertal to pubertal status.

Socio-demographic data

The mean age at referral of the sample was 11 (standard deviation =4).

Tables 2-6 show the main characteristics of the population, giving percentages and the number of cases. Where the data analysis yielded a significant difference, a breakdown is given for boys and girls and/or for under 12s and 12 years and over.

Table 2 shows that there was a slight preponderance of children 12 and over in the sample. Among the under 12s, the ratio of referrals of biological boys to girls is nearly 4 to 1, compared with a referral ratio in the 12 and over category of 4 to 3. Similar numbers of boys were referred in both age groups. The proportion of girls referred increased from 20% to 40% from the younger to the older age group.

Table 2. Sex

The data on ethnicity (Table 3) were not systematically collected from the beginning of the service accounting for the low n. It is therefore felt inappropriate to draw many inferences from these data. However, it would appear that children from the Indian sub-continent are slightly over-represented. The service now collects ethnicity data systematically which will provide a basis for future analyses in this area.

Table 3. Ethnicity

Table 4 shows that about 10% of cases were self-referrals. The majority of these were received in the early years of the service. About half of the referrals came from consultant child and adolescent psychiatrists and 89% of the professional referrals came from a health agency.

Table 4. Referral

Where Table 5 shows living situation at two time points (referral and discharge), Table 6 takes account of all changes in living situation known to the service up to the point of discharge; thus accounting for the discrepancies shown. The family history shows that just over a quarter of all referrals spent some time in care and nearly half of all referrals had experienced living with only one parent. 42% of the children experienced the loss of one or both parents, mainly through separation. The groups in Table 6 are not mutually exclusive and Figure 1 shows the extent of overlap between the groups. This shows that under half (41%) of the sample were unaffected by any of the three factors.

Table 5. Living Situation

Table 6. Family History

Clinical features

Table 7 shows the percentages of cases presenting with each of the clinical features listed as well as the percentages for males, females, under 12s and those 12 and over. Shaded cells indicate that a Chi-Squared test across the two columns is significant at P<0.01. This stringent level of alpha was chosen in order to reduce the risk of Type 1 error since multiple significance testing has been conducted here.

Table 7. Clinical Features (Percentages rounded to nearest whole number)

P<0.01 (two-tailed)

75% of children and adolescents referred stated a wish to belong to the other sex. Only 21% stated a belief that they belonged to the other sex, the majority of these overlapping with wishing (only 3.2% stated a belief but no 'wish'). In this sample, prevalence of the features 'preference for friends of the other sex', 'preference for toys stereotypically used by the other sex', 'preference for other sex roles in play', 'cross-dressing' (boys), and 'interest in cosmetics and jewellery' (boys), is significantly higher in the younger age group than the older age group. Conversely, prevalence of 'dislike of bodily sexual characteristics' is significantly higher in the older sample. Prevalence of 'dislike of bodily sexual characteristics' is significantly higher in girls than in boys.

Associated clinical features

Table 8 shows the percentages of cases who presented with each of the associated features listed (items from ACPP data set list below 10% excluded) as well as the percentages for males, females, under 12s and 12 and over. Shaded cells indicate that a Chi-Squared test across the two columns is significant at P<0.01.

Table 8. Associated Clinical Features (Percentages rounded to nearest whole number)

P<0.01 (two-tailed)

The most common associated features were relationship difficulty with parents/carers (57%), relationship difficulty with peers (52%), depression/misery (42%), family mental health problems (38%), family physical health problems (38%), harassment/persecution victim (33%), and social sensitivity (31%).

Harassment/persecution is significantly more common in boys than in girls while depression is more frequent amongst the girls than the boys. Depression is also more frequent in the older age group as is self-harm/overdose and self-injurious behaviour. Other problems also significantly more common in the older age group were self-harm, school non-attendance, difficulties in all family relationships and inappropriately sexualised behaviour.

The mean total number of associated features is 11.24. There is large variability with a standard deviation of 9.05; however, Table 9 shows a cumulative breakdown of the total number of associated features. Only 2.5% of the sample have no associated features.

Table 9. Total Associated Features

Table 10 suggests that the total number of features is significantly higher in the older age group (P<0.001) but that there is no significant difference between girls and boys.

Table 10. Total Associated Features - means

P<0.001 (two-tailed)

Case complexity

Table 11 presents the global mean scores for case complexity as well as those broken down by age category where a statistically significant difference was obtained in the analysis.

Table 11. Case Complexity

P<0.001 (two-tailed)

The data indicate a high level of case complexity. The complexity score was significantly higher for the 12 and over group compared to the under 12 group (P<0.001) but not significantly different between males and females.

Discussion

Socio-demographic data

The ratio of boys to girls in the under 12 sample is roughly 2:1. The proportion of girls is higher than in North American samples. DSM-IV has suggested a ratio of 5:1 and Zucker (in Di Ceglie, 1998) has suggested a ratio of 6:1. This may indicate that in the UK prevalence is either higher in girls or lower in boys compared to North America. On the other hand, the different ratios may be a reflection of varying attitudes towards cross-gender behaviour in boys and girls, and hence the difference of referral rates between the UK and North America.

It is not clear why the ratio of girls referred in the older age group is higher. It may be that gender identity disorder manifests itself later in girls, or that pre-pubertal girls with gender identity disorders exhibit behaviours that are not easily distinguished from 'tomboyish' behaviour, and consequently, do not get referred. Tomboyish behaviour is not commonly considered a cause for concern in western cultures. However, with the onset of puberty, the biological girl's distress about her developing body may become more intense, with social differences increasing between girls and boys. This may in some cases lead to an increased sense of social dislocation for girls with gender identity disorders.

The referral data show that consultant child and adolescent psychiatrists are now the main gatekeepers to this specialist service and that secondary health service resources are almost always initially involved in these cases prior to referral to this specialist service. Most self-referrals were made in the early years of the service which may be a reflection of changes to NHS contracting procedures which discourage self-referrals. It is not clear to what extent self-referrals may still occur, as self-referrers would now be advised to visit their GP first, hence converting the referral to a GP referral.

In terms of family history, it is clear that there is a high incidence of displacement and separation in the majority of children and adolescents referred to the service. It is difficult to establish what role the experience of separation plays in the development of a gender identity disorder because we do not know the timing of the loss in relation to the onset of the gender identity problem. The data show that there is a high level of separation and complicated family history and that the majority of our sample is affected by one or more of these factors. It may be possible that these data are a reflection of an increased likelihood for lone parent families and families with other difficulties to find it more difficult to handle their children's problems and thus bring their children to health care agencies more often. It is possible, however, that the separation and displacement factors could be contributory factors to the disorder in some cases (Coates, 1985). Therefore, the service should in future aim to establish full histories of these factors. It is also important to keep track of developments while the case is open, as cases are open, on average, around two years and in some cases up to about seven years. An attempt was made to establish similar data for displacement in relation to school changes etc., but data were too incomplete to carry out any analyses. It would also be useful for the service to establish histories of this information and to track it through the duration of the case.

Clinical features

It is important to note the prevalence of dislike of bodily sexual characteristics being almost 50% overall. This is more common than supposed by both DSM-IV and ICD 10 where this is considered a rare feature. DSM-IV states 'more rarely, boys with Gender Identity Disorder may state that they find their penis or testes disgusting', and ICD10 (1996) states 'In both sexes, there may be repudiation of the anatomical structures of their own sex, but this is an uncommon, probably rare, manifestation'. This may suggest a difference between UK and USA in prevalence of this feature. However, it may alternatively suggest that there has not been sufficient data collected specifically about this feature to inform diagnostic systems.

The difference found between the younger and older age groups in 'dislike of bodily sexual characteristics' may indicate that this feature increases with growing up and moving towards adolescence and becomes a major preoccupation with the onset of puberty. These observations, however, may alternatively be indicative of the consequences of later referral to the service which could either be an indicator of later onset of the problems or later recognition by family or health agencies, hence the need for more detailed longitudinal research. In the latter case however, the data would suggest that children with gender identity disorder ideally require specialist support before puberty to avoid some of the distress caused by the development of secondary sexual characteristics during puberty. Along with the suggestion that with puberty the reality of the developing body becomes more troubling and a source of distress, these issues are particularly important to consider in case management, as interventions need to be found to alleviate the distress.

Most other clinical features, however, tend to be less common in the older age group suggesting that these other problems may decrease with adolescence. However, it may also indicate that with growing up there is a tendency to conform more to stereotypical gender roles. For example, in the under 12 group, not wearing stereotypically gendered clothes is a very predominant feature for both boys and girls. However, in the older age group this feature is much less predominant. Pressure to conform to gendered dress codes may be brought on at this time, in particular, from various social agents such as schools requiring children to wear gender appropriate school uniforms.

It is interesting to contrast these patterns with those of the associated clinical features where problems tend to be more common in the older age group. It may be possible therefore, that increasing conformity in terms of gender behaviour and appearance by adolescents is counteracted by increasing non-conformity and distress in other areas of social life.

Associated clinical features

The most common problems are those in the areas of relationships, family context and mood. These data suggest that children with gender identity problems experience considerable difficulties in their relationships with significant adults and peers which may lead to significant isolation. They can also become the victims of persecution, which may contribute to feelings of depression and misery.

The high percentages of mental and physical health problems in the families of children and adolescents referred may indicate that factors such as parental depression or major physical illness may represent a traumatic event for the child, possibly contributing to the gender identity problem. This relates to the data on family history above, which suggested there may be a link between loss and separation in family life with the development of the disorder. However, again it is necessary to be cautious as the data may be a result of families with mental and physical health problems bringing their children to health agencies more readily.

The finding that boys appear to experience significantly more harassment than girls may be due to the fact that gender non-conformity in boys is less socially acceptable than in girls. However, it was also found that girls experience more depression and misery than boys. While this finding is concordant with general epidemiological data that shows a higher prevalence of depression in females in comparison with males, it may also indicate that girls and boys have different emotional reactions and ways of coping with these problems. In spite of the higher rate of depression in girls, the rates of self-harm and self-injurious behaviour are similar between boys and girls, suggesting that self-harming behaviour and suicide risk should be treated as equally great in both boys and girls. The high rates of depression in boys and girls and the significantly greater incidence of depression and self-harm in the older age group suggests that gender identity disorder represents a high suicide risk and again indicates the importance of specialist treatment and support before, during and following puberty. Depression and suicidal risk in adolescents with gender identity problems are discussed at greater length by Sadowski and Gaffney (1998).

Relationship difficulties appear to be a significant problem for boys and girls in both age groups. However, it is particularly noticeable that relationship difficulties with family members appear to be significantly more common in the older age group. School non-attendance is also significantly more common in the older age group.

These patterns do not give a complete picture, but give some clues as to the complexity of the development of gender identity disorder during and after puberty. What these data may be suggesting, as discussed above, is that with the onset of puberty, adolescents begin to conform more to gender roles in public areas of social life; but that this is counterbalanced by increasing problems with family relationships, avoidance of school and peers, increased depression and hence suicide risk.

The results also show that children with gender identity disorder often have several associated features rather than one or two. It is rare for there to be no associated features and about 70% of the sample had more than five associated features. Again, there is a significantly higher mean number of associated features in the older age group, suggesting that the transition to adolescence is particularly troubled for this group. This has an obvious relevance for management, as clinicians, families and social agencies will need to be alerted to the increasing difficulties brought about by adolescence and devise interventions to prevent these undesirable developments.

It is also important to note that some children and adolescents with gender identity disorders may have few associated psychological problems, as Cohen-Kettenis et al. (1998) found in the first sub-group of their study. However, it should be recognised that this study concerned a highly selected group and it is not clear to what extent their findings would hold up if the two samples in the study were examined as a whole. Moreover, the finding in this study that children and adolescents presented with a higher level of associated clinical features may indicate that referrers tend to refer more complex cases to this specialised service.

Case complexity

In line with the discussion above, the results for case complexity suggest either that puberty may lead to an increasing complexity of problems or that cases become more complex the later they are referred to the service owing to lack of intervention and management before puberty.

Limitations

These data are a useful source of information, indicating the range of difficulties children with gender identity disorder face, particularly as they reach and go through puberty. However, the data are limited in having been extracted retrospectively from case files. While the audit has any information present in the files, any information not in the files would not be known. With this in mind, the service has now begun a comprehensive programme of evaluation and outcome monitoring which will include the use of a standardised questionnaire for gender identity features, the Child Behavior Checklist, the Youth Self Report Form for adolescents and a service therapeutic aims questionnaire.

A further limitation is that little is known about the timing of specific events which may help identify common risk factors (e.g. loss or separation). The evaluation programme will therefore also aim to collect more detailed information about, for example, family history including death, divorce, mental and physical illness and educational history including moving schools, and school exclusions.

An original aim of the audit was also to collect data on outcomes of treatment in terms of gender identity, sexuality and associated clinical features. However, there was limited information available on these areas and not enough to draw any conclusions. The new evaluation programme within the service, therefore, includes use of the measures described above at the beginning and end of treatment as well as at six monthly follow-up intervals. The service is also considering a project to follow-up cases in terms of gender identity and sexual orientation outcomes, psycho-social functioning and users? evaluation of the service received.

Conclusions

Our data show that gender identity disorders in children and adolescents referred to this service are rarely isolated phenomena, but tend to be part of a more complex picture; this may be due to referral bias as previously mentioned. It is possible that the presence of a gender identity disorder may lead to other problems in the course of development, or other problems might contribute to the development of the gender identity disorder. There is considerable evidence that problems tend to increase with the onset of puberty and adolescence.

In our view, the unusual manifestations of these problems and their complexity require a multi-disciplinary approach in which both mind and body are taken into consideration, and need the input of a specialist service. These children and adolescents, and their families, need long term support and understanding. Interventions involving the social network (e.g. school, family support groups) are often necessary given the relationship difficulties that this audit has highlighted, and it is essential that these are well co-ordinated.

Statistical data on their own can seem arid and require imagination for the individuals behind the statistics to come alive; however, quantitative data contribute evidence for the need and development of appropriate services. The recognition of the particular issues presented by these children and adolescents in the development of their gender and personal identity will contribute to the improved mental health and social functioning that they are able to achieve.

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Correspondence to Dr D. Di Ceglie, Gender Identity Development Unit, Portman Clinic, 8 Fitzjohns Ave, London NW3 5NA (GIDU@tavi-port.org)