Rutter's Child and Adolescent Psychiatry Book 2

All societies need to decide how to respond when children lose or are abandoned by their parents, when parenting breaks down, or when serious abuse, neglect or family dysfunction means that children need to be safeguarded by removal from their biological families. At one time, extensive use was made of orphanages but, for good reasons, most countries have sought greatly to reduce or eliminate the use of residential care for very young children. Countries differ in their approaches to child welfare and major variations exist in policy and practice among countries. The threshold at which intervention in family life is justified by the child welfare agencies differs. The length of time spent in care away from home, the type of placement that is favored and the extent of moves between placements vary. Children enter public care for a variety of reasons in the UK but the majority do so because of abuse, neglect and family dysfunction. Sixty-eight percent are placed in foster care, 13% in residential care and about 9% are placed with their birth families. The remainder are placed for adoption or in more specialist placements (DfES, 2006). This chapter focuses on mental health aspects of residential and foster family care. It deals with the mental health of children in residential and foster family care in countries with modern child welfare systems and considers assessment and intervention in both settings. It covers the effects of orphanage care where it still exists and recent attempts to improve its quality. Finally, it deals with comparisons of residential and foster family outcomes, cost-effectiveness and future directions. Much of the published research on residential care and foster family care concerns the provision and management of children’s placements. Research funds are largely raised to answer policy and economic questions rather than developmental ones and studies often resemble audits of the local child welfare agency’s activities. This kind of research is crucial to the provision of good quality care but less illuminating regarding children’s mental health. We will therefore only be attending in passing to issues of recruitment, assessment, retention and remuneration of foster and residential care staff; policies to raise standards and eradicate abuse in care settings and the growing attention to children’s rights. Kinship care will not be dealt with here (see chapter 33) and only brief mention will be made of short-term foster placements with a view to return home. Institutional Care in Early Life: Assessing Effects and Improving Environments Effects of Institutional Care in Early Life It is over 50 years since the first studies drew attention to the negative effects on children raised in institutions (Goldfarb, 1945; Spitz, 1945) and since Bowlby (1951) published Maternal care and mental health, where he voiced his concerns about the importance of secure early attachment relationships. Subsequent empirical investigations have refined our understanding of what kind of effects, including disorders of attachment, are produced by what kinds of environment. Two influential studies have been conducted in the UK on children with different amounts of exposure to residential care. Tizard and colleagues studied infants who had experienced residential nursery care for the first 2 years of life, involving high turnover of caregivers, and compared those who went home with those who were adopted or who remained in institutions. When they were assessed at 41 /2 years (Tizard & Rees, 1975), those who remained in institutions had higher mean behavior problem scores and had not formed deep attachments. A substantial proportion of the sample, when followed up to adolescence, showed social difficulties, especially in peer relationships (Hodges & Tizard, 1989). This study suggested that early institutional care can have enduring effects. Quinton and Rutter (1988) studied outcomes of children who had disrupted early years, were taken into public care and then spent prolonged periods in group homes in the 1960s. The regimes were not harsh, but multiple changes of staff resulted in little consistent affection. The adult follow up of this excare sample (Rutter, Quinton, & Hill, 1990) showed that onethird were faring poorly. With regard to the ex-care women, 30% had a poor general psychosocial outcome and 40% had a rating of poor parenting, much higher than in the general population comparison group. However, it was evident that many did not show poor parenting and a minority, surprisingly, showed good parenting. These studies indicate that an institutional environment, when involving lack of consistent personalized care, can contribute to harmful effects on 487 Residential and Foster Family Care 32 Alan Rushton and Helen Minnis 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 487 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

development but also that later positive experiences can divert some from negative outcomes. Continued Use of Institutional Care for Very Young Children Despite recognition of the significance of the caregiver–child relationship and the known ill effects and costs of prolonged residential care, the lessons have not been equally absorbed in all countries. Browne, Hamilton-Giachritsis, Johnson et al. (2006) have recently conducted a survey on the use of institutional care for children under 3 years in 46 countries in the European region. The data were all based on official government figures, with the usual limitations, but the overall rate of institutional care was estimated at 14.4 per 10,000 children under 3 years. This amounts to nearly 44,000 very young children. The countries with the highest use of institutional care in proportion to the population under 3 years were Bulgaria (69 per 10,000), Latvia, Belgium, Romania and Serbia and Montenegro. These data provide a useful benchmark figure with which to compare the highest use with countries with no institutional care for very young children and in order to compare future efforts at replacing institutional with familybased care for this group. It was suggested that low spending on health and social care was related to a higher proportion of institutionalized children. As understaffed poor-quality group residential care still exists in many countries, this has afforded the possibility of conducting studies on the development of children raised in extremely depriving circumstances. Chisholm’s (1998) follow-up study revealed more insecure attachment and indiscriminately friendly behavior in children adopted from Romanian orphanages than among never-institutionalized and early adopted comparison groups. Vorria, Papaligoura, Dunn et al. (2004), in a study based in the Metera babies’ center in Greece, showed much higher rates of disorganized attachment in residential care infants compared with infants living in birth families. Follow-up in adoptive placements at age 4 showed that the institutionalized children continued to have poorer cognitive development, were less secure and had poorer understanding of emotions compared to family controls (Vorria, Papaligoura, Sarafidou et al., 2006). The Bucharest early intervention project group (Zeanah, Smyke, Koga et al., 2005) has also shown that an institutionalized Romanian group exhibited serious disturbances of attachment (see chapter 55) compared with a never-institutionalized community group. Furthermore, variation in the quality of caregiving was related to the attachment status of children in the institutional group. Other researchers have begun to investigate the effect of early maltreatment and institutionalization on the hypothalamic– pituitary axis and results suggest that deficiencies in early care may be associated with abnormal patterns of diurnal cortisol production (Dozier, Manni, Gordon et al., 2006). The neuroendocrine system appears susceptible to relationship disturbance and periods of long-term exposure to stressors may result in damage to areas of the brain and this may confer vulnerability for later disorder. Low levels of cortisol seen in older foster children may result from a system that has been downregulated through continuous response to stress (Dozier & Rutter, in press). A major question is whether these are enduring effects, or whether a radical change of circumstances following institutional care, especially by means of adoption, can erase the effects of early adversity. The English Romanian Adoptees (ERA) Study Team have followed up children (n = 144) who were placed in institutions, mostly in the first month of life, and who had very poor early experience with little stimulation or interaction with caregivers and with inadequate nutrition. It was shown that these children can achieve significant developmental catch-up, depending on their age at adoptive placement (O’Connor & Rutter, 2000; Rutter et al., 1998). In terms of psychological functioning assessed at 6 years of age, 70% of those entering the UK at less than 6 months showed no impairment, but of those entering later, 24–42 months, only one-quarter had no impairment. However, when compared with a UK adoption sample who had not experienced institutional care, they exhibited cognitive impairment, quasi-autistic patterns, inattention/overactivity, disinhibited attachment disorder symptoms and poorer peer relations. It was concluded that psychological deficits persist in a substantial minority. Cognitive functioning and disinhibited attachment disorder symptoms were strongly related to poor quality institutional care that persisted beyond the age of 6 months (Rutter, Beckett, Castle et al., 2007). It was suggested that disinhibited attachment disorder symptoms were related to a relative failure to develop selective attachment, whereas cognitive impairment was more likely to be related to neural impairment. However, both outcomes could reflect some form of programming effect on brain development (see chapter 12; Rutter et al., 2007). Further follow-ups are planned for many of these early institution-reared samples. Catch-up appears to be more possible with regard to physical development and cognitive ability, but with an enduring impact for some children on behavioral and social development. Questions remain as to what contribution is made to longer-term differential outcome by genetic inheritance, mother’s physical and mental health during pregnancy, perinatal factors, child temperament and the benefit of subsequent high-quality environments. Longer-Term Consequences of Institutional Care on Young Children So far, few follow-up studies have been undertaken to see how early privation affects development into later phases of the adult years. However, follow-up studies of children who remained in, or were adopted out of, orphanages in the 1950s and 1960s offer the prospect of lifespan studies to examine group outcomes. Although tracking representative samples may be problematic, this could reveal whether subsequent favorable experience can modify or remove the risks, or whether there are subgroups with poor adjustment, in particular having continuing social relationship problems. There appears to be only one very long-term study of orphanage infants followed up into later adulthood and comCHAPTER 32 488 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 488

pared with a matched community group (Sigal, Perry, Rossigol et al., 2003). The ex-institutional adults were found to be more isolated and had more stress-related physical illness. However, the study was based on a convenience sample of litigants in a self-help group and this may have contributed to sample bias. Improving the Environments of Young Children in Institutional Care As the pattern of short- and long-term negative effects continues to be worked out, so policies on what is best for children are being developed. In those countries where institutional rearing continues to be the main form of care for unwanted or relinquished babies and children, efforts are now being made to reduce the carer–infant ratio in order to provide greater contact time and continuity of relationships. Better training for staff will emphasize the importance of more individualized care. One experiment is evaluating the outcomes of such efforts. Groark, Muhamedrahimov, Palmov et al. (2005) have developed interventions in baby homes in St. Petersburg to see if the stability and social responsiveness of caregivers can be improved and whether the developmental progress of the infants can be promoted. The homes prior to the intervention were orderly but impersonal and the physical care sufficient but mechanical. They compared two active interventions with a no-intervention group. In the first experimental group, carers were helped to replace detached caregiving with more warmth and sensitive responsiveness. In the second group, structural changes only were made to increase the stability of caregivers to provide more continuity of relationships. Initial data (see www.education.pitt.edu/ocd/projects/russiaproject.pdf ) have shown that significant changes were observed in the carers’ behavior and in children’s development (physical growth, psychological development and positive affect), but the full analysis comparing outcomes across groups is ongoing. In a Romanian intervention study, Sparling, Dragomir, Ramey et al. (2005) established small groups with a familiar adult, stressing enriched educational activities. Significant developmental progress was demonstrated compared with usual institutional care controls. Zeanah, Nelson, Fox et al. (2003) are conducting a randomized controlled trial into foster family care as an alternative to institutionalization in Bucharest. Institutional children are being randomly selected into a newly set up foster care system and compared with those who remained in the institutions. It is important to consider which features of early institutional care affect outcomes across a range of developmental domains. The specific contributions of inadequate nutrition, physical and sexual abuse, lack of play and stimulation, of opportunity for selective attachments and lack of personalized care need to be investigated. Further research, based on follow-ups from differing early care environments is needed in order to tease apart these influences. Clearly, those families willing to take on the care of exinstitutional children need good evidence-based information on their likely life course plus relevant preparation and longterm support services (Groze & Ileana, 1996). Those families facing continuing difficulties should be encouraged to seek help from specialist child and adolescent mental health services for the assessment and treatment of complex developmental and social problems. There remains a great amount of institutional care internationally and warnings have been sounded that the AIDS epidemic will produce many more orphans where the family and community are not able to absorb them (Levine, 2000). Modern Residential Care and Children’s and Adolescents’ Mental Health Residential provision for children and young people, when defined most broadly, can embrace care settings with a variety of titles. In this chapter we deal with non-family settings that aim to provide care, protection and control, variously known as children’s homes, community homes or group homes. We will also deal with residential treatment centers that aim to provide therapeutic care for mental health needs and are specifically staffed and resourced to do so. However, severe problems can be found in each setting, because examples of major mental illness that have been missed can be found in social care settings (McCann, James, Wilson et al., 1996). Child and adolescent psychiatric units (see chapter 69), special residential schools (often for older disabled children; see chapter 74), young offender institutions (see chapter 68) and independent fee-paying boarding schools may all be seen as forms of residential care but are beyond the scope of this review. Defining types of residential care can be problematic and even services carrying the same name (e.g., “residential group home”) will differ widely within and across countries, especially with regard to the size and characteristics of the resident population, the staffing ratio, typical length of stay, objectives and culture: all of which make for difficulties in making meaningful comparisons of “residential” outcomes. Residential care is clearly not a single entity, as the physical and psychological environment for the child is capable of considerable variation, with the quality of care likely to be the most important aspect. Furthermore, it is hard to judge the validity of classic studies conducted several decades ago when practices and attitudes may have been very different. Reviews of residential care outcome studies have generally lamented both the small volume and modest quality of evaluative research (Bates, English, & Kouidou-Giles, 1997; Foltz, 2004; Whittaker, 2000). Few studies have been conducted at Level One, that is employing experimental evaluation (see the York Centre for Reviews and Dissemination hierarchy of research designs), and most research is at Level 3, that is cohort studies without controls. The research requirements to answer “what works” questions are similar to those for other psychosocial interventions; namely, adequate sample size, random allocation to the intervention, appropriate and RESIDENTIAL AND FOSTER FAMILY CARE 489 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 489

reliable multiple outcome measures across time, detailed identification of the intervention and fidelity in its application, appropriate statistical analysis and economic costing. The fact that such studies are rare is partly because of the ethical and logistical obstacles to be surmounted in randomly allocating children in “real world” settings to residential care or to alternatives. Most studies are therefore of single children’s homes, or study samples combining children from several homes, and employing within-group analysis of outcomes. Single sample designs do not, of course, permit conclusions about the effectiveness of residential care, but can be used to see which factors predict differential outcomes. However, even where controlled studies have been conducted in related areas, namely on young offenders and child and adolescent psychiatric inpatients, few differences in outcome have been shown on key measures. When benefits have been shown, the effect sizes have been small (Lyman & Campbell, 1996). Unfortunately, experimental studies comparing different models of residential care would necessitate large cluster randomized trials and the cost may not fall within the budgets of the child welfare research funding agencies. In the nearabsence of randomized controlled comparisons, the residential field has had to rely on culling the best information from existing studies, despite their limitations. The following studies have been selected because they have been conducted recently, thus reflecting current practice, and on relatively large samples. Group Homes for Children Designed to Offer Care, Protection and Control This section deals with the population of children in countries where residential care is no longer used for younger children, but continues to be used for young people without available families or those who cannot live with, or be managed within, their own or a foster family. In the UK, the residential care population constitutes a relatively small, but high-risk and resource-consuming aspect of child welfare. In the UK, most residents will be young adolescents showing very raised levels of social and emotional problems, and dysfunctional coping strategies (Meltzer, 2003). They are likely to have experienced abuse and/or neglect, to have been in previous failed placements, to have an ethnic minority background and may have been placed by virtue of being unaccompanied asylum seekers or refugees. Young people in residential care are also more likely to have physical or intellectual disabilities that may raise the risk for attendant mental health problems (Sinclair, 2005). Given these problematic backgrounds, the staff of children’s homes are therefore confronted with numerous problems in managing the young people in their care. The home must carefully judge its protective response to the young people in relation to sexual exploitation, bullying, drug-taking and exposure to health risks. Conflicts are likely to arise in controlling disruptive behavior or threats against staff and in the application of restrictions, forms of punishment and physical restraint. Sometimes, these “care” and “control” principles are in conflict (e.g., when the “right” of a young person to abscond conflicts with the aims of the home to protect the young person from risk). The heavy criticism of the quality of residential child care evidenced both by abuse inquiries (Utting, 1997; Waterhouse, 2000) and studies of the psychological needs and problems of residents has led many to the conclusion that residential care is ineffective, or at worst positively harmful, and resulted in a swing to a “family is best” ideology. This, combined with the cost, has made residential care a disfavored option and in many countries has led to the rapid run down of residential care places. However, the current literature reveals a spectrum of views on the future of residential care including advocates of high-quality selectively used facilities (Hellinckk, 2002; Pecora, Whittaker, Maluccio et al., 2000). Arguments in favor of residential care are that it is often the young person’s preference, that it can provide better support for educational progress for some and may remove the residents from the influence of delinquent peers in the community. Countries that have tried to do without residential care have had to pull back and recognize that family-based care can have its limits, may similarly result in abuse and that specialized and selective residential facilities are still needed (Ainsworth & Hansen, 2005). Further efforts need to be made to ensure that residential care provides a good quality, safe environment (Stein, 2006). This will include improving the vetting, selection, training and support of residential staff, guidelines on best practices and effective complaints procedures to expose institutional abuse. Two recent studies have examined the outcomes of group home care. Sinclair and Gibbs (1998), in their study of 48 children’s homes in the UK, assessed the outcome of former residents against the effect of having been in what was characterized as a “good home.” This rating was an attempt to develop an overall measure of the social climate or culture by which the homes could be differentiated. Reports by staff and residents of high morale, friendliness and resident involvement were defined as a “good home.” However, having been in a “good home” was found to be unrelated to the outcome measures, particularly when the residents had moved from the home. They concluded that the beneficial experience was true only for their time as residents and did not relate to subsequent outcome. The lack of impact may have been because of the negative effect of the new environment they then entered and may argue for greater continuity of support and mental health intervention. Scholte and van der Ploeg (2000) monitored the outcomes of 200 young people 2 years after admission to residential care. This was a social care setting in the Netherlands that employed some use of specialist psychological interventions. Those who left as planned had reasonable outcomes, whereas those who left prematurely had further developmental difficulties including problems of aggression and antisocial behavior as severe as before their admission. Factors predicting good outcome included the therapeutic climate of the home, use of cognitive–behavioral therapy, emotional support and “home CHAPTER 32 490 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 490

centeredness.” Subsequent negative post-care factors may undo the benefits of good quality residential care while a longer period in good quality care may lead to greater benefit. Better post-care support may help to sustain the positive changes. Residential Treatment Centers Several recent studies have examined the post-residential outcomes of specialized treatment programs for children. A US study (Connor, Miller, Cunningham et al., 2002) examined a psycho-educational program using individual and group therapy and medication for seriously emotionally disturbed children. One-third of the children showed improvement or stayed the same, but the remainder showed deterioration. Children with a high level of psychopathology at admission and children with abuse histories were more likely to be in the deteriorated group. Gorske, Sreabus, and Walls (2003) investigated the outcomes for 150 adolescents in residential treatment centers in Pennsylvania which employed a combination of psychological interventions. Most cases resulted in successful discharge. Those more likely to succeed exhibited less antisocial behavior, lived with family members prior to placement and were given a combination of treatments. Another psycho-educational program (Hooper, Murphy, Devaney et al., 2000), with a longer prospective design than most, found that 6 months after discharge, performance was rated as satisfactory for 68% but reduced to 29% by 24 months. This implies that, in future studies, the effect of the post-care environment will need to be evaluated. Only limited conclusions can be drawn from follow-up from single settings. Studies that show positive outcomes may at first appear encouraging, but leave open the possibility of several explanations. The improvements could have occurred simply through maturation and development. Children in settings that were not studied could have benefited from other more cost-effective interventions. However, it can reasonably be concluded from within-group analysis that those with more adverse histories and more severe problems generally do worse; that continued involvement with a reasonably well-functioning birth family is a positive factor and that the post-discharge period is critical for positive development or for the re-emergence of problems. Where the outcomes were poor, it is possible that the residential care environment was not specialized enough to meet their needs. Interest has recently turned to German and Scandinavian models in the search for improved quality of residential care (Cameron, 2004). The “social pedagogy” model, which emphasizes careworkers sharing the everyday lives of young people in residential services, placing educational aims more centrally and working with their families and the community in order to achieve effective integration into society, is likely to become more influential in the UK (Boddy, Cameron, & Petrie, 2005). This model is not directly comparable with UK services, however, as it has much better staffed and trained workers with higher remuneration. Rigorous evaluations of its effectiveness do not seem to have been conducted, or planned. What is the Quality of the Evidence on Residential Care Environments? Several points need to be made about conceptualization and methodological concerns in residential care research. First, it is evident that the terms institutional and residential care cover a broad range of environments in terms of severity and types of deprivation. It is misleading therefore to refer to the effects of residential care per se. The environment needs to be clearly examined as to the potentially negative and beneficial physical and psychological elements. Second, reliable data are often lacking about events and circumstances prior to admission to residential care. In building a comprehensive model of the factors leading to outcomes subsequent to residential care it is necessary to take into account not simply the degree of exposure to an institutional experience, but genetic inheritance, risk exposure during the pregnancy, perinatal and other preresidential factors. These may all contribute, in combination with the residential care experience, to long-term development. In addition to these prior factors, it is important to consider how long-term outcomes are mediated by subsequent events and how residential care experiences may have different types of adverse effect depending on the developmental age of the child. If the negative effects are reversible, or at least reducible, what is the capacity for adaptability of the individual, or constraints on making flexible responses to a changed environment? Finally, is it possible to have a form of residential care that comes without the usual disadvantages? If resources allowed for the quality of the physical environment, nutrition and medical care to be raised to the highest standard, could paid non-related carers replicate, or approximate, the level of investment and involvement provided by most birth parents? The key test would be whether the quality of staff would be such as to provide consistent individualized care capable of promoting selective attachments. Guidance for Practitioners on the Use of Residential Care Evidence is often lacking to support clear-cut placement choices. However, children with repeated failed foster placements, high-risk behavior or strong opposition to family placement might well be better placed in appropriate residential care. Contact with attachment figures should be maintained where possible, while bearing in mind that children can have very powerful attachments to parents who are abusive and that further rejection, or re-involvement in the negative circumstances that led to care, might result from contact. Careful assessment of risk factors, and of the quality of current relationships with attachment figures, is necessary to counterbalance the presumption that contact is beneficial. Providing Foster Family Care Many children spend only a matter of weeks in public care. Such short-stay foster care placements are known to be a RESIDENTIAL AND FOSTER FAMILY CARE 491 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 491

helpful response at times of crisis or to provide a valuable short break during family hardship and stress. These placements commonly meet their aims, may prevent family breakdown and need not lead to serious distress for the children depending, of course, on how well the move and return are handled and the quality of the alternative care (Aldgate & Bradley, 1999). However, when a safe return home then becomes hard to achieve, the children may drift into becoming part of the longerstay group. Foster care is considered to be the preferred placement for children who have experienced family breakdown or maltreatment (Roy, Rutter, & Pickles, 2000), but of those so placed a significant proportion disrupts; that is, the child has to leave the placement in a manner that is not in accordance with the plans of the foster care agency or department. This is seen as one of the major flaws of foster family care. Rates of breakdown range from 20% to 50% and differ considerably according to the national context and placing agency (Minty, 1999). Ward and Skuse (2001) found that in the first year of care less than half of the children remained in the same placement although half of these moves were regarded as “planned transitions.” We know virtually nothing about the effect of these planned moves on children’s mental health. A recent meta-analysis suggests that the first 6 months of placement pose the greatest risk of breakdown (Oosterman, Schuengel, Slot et al., 2007). For all concerned, a precipitate placement ending is traumatic, not least for the child who then faces changes of school, community and friendships and is left with an uncertain future. When a child has experienced a series of placement disruptions, residential care may be seen as either the “end of the road” or as a relief from the pain of forming relationships that may fail again. Alternatively, the child may drift back to the birth family in the late teenage years, often with unsatisfactory results. Efforts are currently being made to convert stable foster placements into adoption, but little is known about the proportion for whom this legal change is being achieved and with what outcome. It is likely that these placements will be more stable than stranger adoptive placements as positive relationships will largely have been established when the application to adopt is made (Barth, Berry, Yoshikami et al., 1988). What are the factors associated with foster care stability? These are difficult to collate as studies use different samples, definitions of placement endings and different followup periods, but meta-analysis has demonstrated significant associations with behavior problems in the child, older age of the child at placement and a history of residential care (Oosterman, Schuengel, Slot et al., 2007). It has been alleged that transracial foster placements have negative effects on the children, especially in relation to identity and self-esteem. However, in the 1990s, Tizard and Phoenix’s (1995) UK study of mixed parentage adolescents suggested that social class, school and peer groups exerted greater effects on racial identity than the ethnicity of their parents. Rushton and Minnis (1997) reviewed the comparative outcome literature on transracial placement and, although they did not find worse outcomes on standard measures, they did highlight the difficulties that may arise for the children of being separated from the community of origin. In the UK, ethnically matched placements are sought as far as this is feasible and within reasonable time limits. Sinclair and Wilson (2003) found significant associations with outcome for the child wanting to stay in the placement, having high prosocial scores and low disturbance scores. Foster carer characteristics such as warmth and child-oriented foster carers were significantly associated with success. Further multivariate analysis attempted to examine the interactions between child and foster carer characteristics. They found that where foster carers are committed to the child, despite child disturbance, outcomes can be good, at least in the short term. In placements where the foster carers are less committed and the child has a high level of difficulties, outcomes are likely to be less successful. Reinforcing commitment as well as promoting parenting skills should both, in the light of this, be targets for support services. Clearly, policy needs to be directed towards greater recruitment of carefully selected foster families permitting more placement choice, more effective training, more intensive support for foster carers, promoting a skilled and committed children’s social care workforce. Increased financial rewards for foster parents have been shown to be related to retention rates and outcomes for the children and campaigns have been mounted to increase remuneration for foster carers (Chamberlain, Moreland, & Reid, 1992). The impact of such changes has not been subject to recent evaluation. What do we Know About the Mental Health of Children in Residential and Foster Family Care in Modern Child Welfare Systems? All studies have consistently demonstrated a high level of mental health problems in children in public care (Blower, Addo, Hodgson et al., 2004; Curtis McMillen, Zima, Scott et al., 2005; Dimigen, Del Priore, Butler et al., 1999; Halfon, Mendonca, & Berkowitz, 1995; McCann et al., 1996; Meltzer, 2003; Meltzer, Gatward, Goodman et al., 1999). Recent estimates suggest an approximately five-fold prevalence compared to the general population (Meltzer, 2003). These problems include some previously unrecognized major psychiatric disorders (McCann et al., 1996) and a high prevalence of both disruptive behavioral and emotional problems (Meltzer, 2003). Recent work in the USA has demonstrated that nearly 90% of young children entering an episode of care, regardless of placement type, have physical, developmental or mental health needs, with more than half demonstrating more than one problem (Leslie, Gordon, Meneken et al., 2005). A key question here is whether the mental health difficulties of children in public care are a cause or consequence of that care. Harsh parenting and a tendency toward emotional overarousal (which may be inherited) interact in very early life to increase the risk of conduct disorder (Scaramella & Leve, 2004). Disruptive behavioral disorders are particularly linked with foster family breakdown (James, 2004; Leathers, 2002, 2006) and these disorders may test carers beyond their capabilities. 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Child and adolescent psychiatrists are well aware of the phenomenon of children “testing” their parental figures with disruptive behavior, sometimes resulting in a cycle of increasingly coercive parenting. If this style of child–carer interaction actually results in the foster carer relinquishing the child, a vicious cycle of distrust of parental figures may result. It is well established that factors prior to coming into a current placement, such as maltreatment and frequent changes of caregiver, are important contributing factors towards poor mental health (Dimigen et al., 1999; St. Claire & Osborne, 1987), but problems with emotion understanding and theory of mind (Pears & Fisher, 2005) and post-traumatic stress disorder (PTSD; Dubner & Motta, 1999) may also be obstacles to relationship development. Mental health difficulties of children in public care may be brought about by prior adversity, but these problems may also be compounded by unstable placements and poorly matched substitute care. Comparisons in rates of mental health problems simply across placement types can be uninformative without taking into account prior care histories and child characteristics. Scholastic difficulties and poor educational attainment constitute a major aspect of the problems presented by looked after children to child psychiatric services. Abundant evidence exists that poor attainment is extremely common, resulting in a low level of qualifications on leaving care. The percentage of looked after children in England achieving 5 GCSEs has risen slightly, but remains very low, at about 10%, compared with 56% for the non-looked after population (DfES, 2005). It is not clear why this is so. One possibility is to do with the educational environment. However, studies in Europe and the USA indicate similar educational problems. A high-quality French study of young adults who had spent at least 5 years in foster care showed that two-thirds obtained no general educational diploma (a rate more than double the national norm). Poor educational outcome was particularly associated with learning difficulties before going into care (Dumaret, Coppel-Batsch, & Couraud, 1997). It may be that the stability of these long-term placements was important for children to achieve better educational outcomes, which suggests that poor educational outcomes may be associated with frequent changes of placement. One US study compared educational outcomes of high school and post-high school foster care youth matched with those living with their birth families (Blome, 1997). More educational disruption was evident for the foster care youth, a higher rate of school dropout, behavioral problems in school and less financial assistance from their carers for education support. Other factors worth considering in influencing poor progress are the effects of adverse experiences on cognitive development, broken relationships with peers and adults in the school setting associated with placement changes and breakdown, foster carers’ level of engagement with the child’s education and the young person’s feelings of self-worth and ambition. Securing the stability of the foster care placement should therefore be a major aim, as well as striving for better collaboration between education and social services. Adults need to guard against having lower expectations of young people in foster care and to promote opportunities to remain in education. Research is needed to identify promising socio-educational interventions and to evaluate their impact. Improving academic achievement will be central to future employment prospects, to economic status, to life satisfaction and indeed to the mental health of the ex-care population. Comprehensive Assessment of Psychosocial Problems of Children in Public Care The current agenda is to understand how to achieve comprehensive assessments leading to effective interventions. No generally accepted, evidence-based model exists for assessing these children. Recent US research has shown that nearly 90% of children newly entering care placements have complex difficulties including mental health, academic and language problems (Evans, Scott, & Schultz, 2004) and other US evidence suggests that specialists are more successful than community practitioners at recognizing these multiple problems (Horwitz, Owens, & Simms, 2000). Despite this evidence, a recent US survey of national guidelines for the assessment of children entering foster care found that, in less than half of the areas studied, was there a requirement for comprehensive physical, mental health and developmental examinations of all children (Leslie, Hurlburt, Landsverk et al., 2003). Achieving comprehensive assessment of children entering foster family and residential care is complex. Full assessment of child psychopathology usually depends both on current symptomatology and on developmental history and acquiring this information can be difficult, especially for a child who has recently been placed in a new foster or residential placement (Garwood & Close, 2001). Foster carers or residential workers may be able to report on current symptoms, if they have had time to get to know the child, but may have little information on early developmental milestones. Timing of assessment is also important. Many commonly used measures of psychosocial functioning have been normed in the general population and are designed neither to detect problems in recently traumatized children nor to discriminate between ongoing psychopathology and adjustment reactions. In addition to the assessment of conventionally recognized mental health problems, the child’s current relationship functioning needs to be considered. In an innovative project in Louisiana, every child coming into foster care under the age of 4 years has a comprehensive assessment by a specialist Infant Mental Health Team (Zeanah, Larrieu, Heller et al., 2001). The assessment consists of face-to-face contact with the child and each important caregiver such as birth parents, foster carers and child care providers. It includes home- and clinic-based observations, interviews and self-report measures designed to identify strengths and weaknesses in children and families. In a quasi-experimental design, this group has shown that the assessment package, plus an intervention designed to RESIDENTIAL AND FOSTER FAMILY CARE 493 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 493

help parents accept responsibility for their maltreatment, significantly reduces the recurrence of maltreatment of children who return home and significantly reduces maltreatment of subsequent children by the same parent. Interestingly, the rate of freeing for adoption was also increased in the group receiving intensive assessment and treatment, suggesting that the assessment allows a clear decision to be made regarding the viability of the child–birth family relationship. In the UK, many new specialist mental health teams for children in foster and residential care have been developed over the last few years, but models of assessment and treatment vary from teams that offer mainly consultation, to those that offer detailed assessment of the child in the family context. Although studies comparing different models of assessment are rare in this population, there is evidence that problems are commonly missed in this group (Evans, 2004; Horowitz, Bell, Trybulski et al., 2001; McCann et al., 1996). This, and our clinical experience, would lead us to recommend that there should be a thorough assessment of the child’s strengths, interests and potential protective factors that could be built on, all areas of psychopathology, speech and language functioning and the quality of attachment relationships. Because educational difficulties are so common in this group, we would strongly recommend full cognitive and educational assessment even when problems are not suspected. Interventions to Improve the Mental Health of Children in Public Care Interventions in Residential Settings Long-standing problems exist in recognizing mental health problems in the residents of children’s homes, and despite the call for greater involvement of specialist child mental health services, few projects have been evaluated. Many problems are potentially treatable by a range of psychological interventions. The efficacy of such interventions has been reviewed by Fonagy, Targey, Cottrell et al. (2002) but there is a lack of evidence on the extent to which modifications may be needed when applied in the context of residential care. In considering how to achieve greater access to evidence-based interventions, residential care managers and practitioners will need to assess which staff members with what levels of experience and skill might use these interventions. Many aspects of the children’s and young peoples’ lives will be different in the residential care context so that individual, group- and familybased approaches may need to be thoughtfully adapted. The quality of the relationships between staff and young people is likely to be a major factor in promoting positive mental health. The rationale is that supportive and containing relationships between young people and staff can contribute to ameliorating past negative relationships (Berridge, 2002; Moses, 2000). The residential careworkers may be the best target for providing training, support and mental health consultation because they are likely to have the greatest influence in helping the young person to develop self-understanding and prospects for change (Wilson, Petrie, & Sinclair, 2003). Careworkers need skills in managing oppositional behavior and aggression, containing the expression of powerful feelings as well as understanding the underlying problems in order to shape their response more appropriately. However, little evidence has so far emerged to show that improving the skills and knowledge of the staff can have a beneficial impact on the resident, both during and after residential care. The external residential consultant will need to respect the stresses that fall on, frequently young, residential staff providing 24-hour care. The mental health consultants can help the staff of a residential home to have a greater understanding of the possible origins of a young person’s current difficulties and to help staff to adopt rational management strategies. They can identify the type and severity of disorders and recommend appropriate treatment, based either in the home or in the clinic. Interventions in Foster Family Care There has been a sea change, at least in the UK and USA, in attempts to intervene with the psychosocial difficulties of children in public care. The accumulating evidence regarding placements themselves (Sinclair, 2005) and about these children’s difficulties, along with a realization of the need for co-ordination between different agencies (Callaghan, Young, Pace et al., 2004; Racusin, Maerlender, Sengupta et al., 2005), has stimulated the development of teams whose remit is to provide specialist intervention for these children. Interventions tend to fall into two main categories: symptom focused or systemic (Racusin et al., 2005). However, considerable variation still exists in the provision of child and adolescent mental health services for such children (Callaghan et al., 2004; Leslie, Gordon, Meneken et al., 2005; Minnis & Del Priore, 2001). Some of the most vulnerable children do not access child and adolescent mental health services (CAMHS) because of their mobility through placements, a tendency for social workers and foster carers not to refer on despite recognition of problems or, once referred, their mental health profile not fitting with conventional diagnostic criteria used in CAMHS (Callaghan, Young, Pace et al., 2004). Because almost all children in public care have suffered disruption of attachments and been maltreated, an obvious focus for intervention is attachment relationships. Maltreatment (Carlson, Cicchetti, Barnett et al., 1989) and institutional care (Vorria et al., 2004) are both strongly associated with disorganized attachment but, in addition, unusual attachment patterns are common in children adopted from institutions (Chisholm, 1998; Marcovitch, Goldberg, Gold et al., 1997; O’Connor & Zeanah, 2003a). Reactive attachment disorder (RAD) describes a constellation of social behavioral abnormalities, including: (i) disinhibition with strangers; or (ii) inhibited, hypervigilant or highly ambivalent reactions (American Psychiatric Association, 2000) and, although the research database is scant, there is now research on both institutionalized (Boris, Zeanah, Larrieu et al., 1998; Boris, HinshawFuselier, Smyke et al., 2004; Chisholm, 1998; O’Connor & CHAPTER 32 494 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 494

Zeanah, 2003b; Smyke, Dumitrescu, & Zeanah, 2002) and otherwise maltreated groups of young children (see chapter 55; Boris et al., 2004). RAD and insecure attachment patterns are different entities and it is possible to have RAD yet an apparently secure attachment with the current caregiver. Placement in a stable family environment is a major intervention in itself (van IJzendoorn & Juffer, 2006) and there is evidence of the development of attachments between children adopted from institutions and their adoptive parents (Chisholm, 1998; O’Connor & Zeanah, 2003a). A study of children placed in foster care in Romania from institutions showed a reduction in RAD symptoms, compared to controls. After around 18 months, there was no difference between foster care and never-institutionalized comparisons for emotionally withdrawn/inhibited symptoms whereas disinhibited symptoms persisted, albeit in a reduced form (Zeanah & Smyke, 2005). Conversely, the development of secure attachment in foster care seems to depend more on the foster carer’s “state of mind” with respect to attachment than on the child’s history (Dozier, Lindhiem, & Ackerman, 2005), so the story is far from simple. Zeanah’s group in New Orleans (Zeanah & Smyke, 2005), and Dozier’s group in Delaware have developed intervention packages to help children and new foster carers develop attachments. Barriers to attachment in the child can include regulatory, psychosocial and developmental problems, an internal working model of relationships as being inconsistent and conflicting loyalties between birth parents and foster carers (Zeanah & Smyke, 2005). Foster carers may present their own barriers related to their own experience of parenting and child care and to their experience of, and attitudes towards, fostering. Dozier, Lindhiem, & Ackerman (2005) found that foster mothers with dismissing and unresolved states of mind with respect to attachment were likely to have infants with disorganized patterns. They conclude that it is easier for a child in foster care to organize his or her attachment system if the caregiver is nurturing and is autonomous with respect to his or her own attachment history. A key goal of treatment therefore is to assist foster carers to become the person the child goes to when distressed. In order to achieve this, both the New Orleans and Delaware teams aim to support foster families to provide a safe and predictable environment, help the child regulate emotions, understand the child’s (often confusing) signals and provide nurturance even in the face of avoidance from the infant (Dozier, Lindhiem, & Ackerman, 2005; Zeanah & Smyke, 2005). More intrusive therapies, previously called “holding therapies,” have been used in an attempt to treat RAD and great concern has been raised because of certain particularly coercive forms that resulted in child deaths (O’Connor & Zeanah, 2003a). Some therapists who came from this tradition have now explicitly stated that they no longer use coercive techniques and small-scale research suggests clinical benefits from what is now called dyadic developmental psychotherapy (Becker-Weidman, 2006; Hughes, 2003). These methods require adequate evaluation for both effectiveness and safety. There have now been a number of randomized controlled trials (RCTs) evaluating training of foster carers to be agents of therapeutic change for the child. For example, two UK studies have used the RCT design to evaluate group-based interventions with foster carers aimed at improving parenting and, hence, children’s emotional and behavioral functioning. One used an attachment-based model (Minnis & Del Priore, 2001) while the other used a cognitive–behavioral model (Macdonald & Turner, 2005). Overall effect sizes were small and non-significant with respect to changes in the children, despite carers reporting benefits from the interventions in both cases. The interventions may not have been intensive enough, or insufficiently targeted on the specific problems or not followed through tenaciously enough with the carers to produce significant change in the children, although all changes were in a positive direction. It seems counterintuitive that group interventions should be effective in vulnerable populations (Scott, Spender, Doolan et al., 2001) yet apparently less effective in foster care. One possible explanation may be that foster carers are already engaging in effective parenting practices so that effect sizes will inevitably be small compared to families in which there is greater scope for change. Furthermore, foster care training, while important, is a minimal intervention when the complexity of children’s lives and difficulties is considered and should be seen as part of a comprehensive package of support to foster families. A number of promising developments in the UK include the Coram Family adaptation of Webster-Stratton’s Incredible Years program for the fostering population (Henderson & Sargent, 2005), publication of the comprehensive Fostering Changes manual (Pallett, Blackeby, Yule et al., 2005) and pre-post study (Pallett, Scott, & Blackeby et al., 2002) and Rushton, Monck, Upright et al.s’ (2006) RCT comparing behavioral and educational parenting interventions with social work support service as usual. Treatment Foster Care Treatment Foster Care (TFC) is not just a more specialized form of foster care but a treatment in itself and an alternative to psychiatric inpatient treatment or incarceration (Meadowcroft & Thomlison, 1994). Although there are various treatment foster care models, the best known and best evaluated is multidimensional treatment foster care (MTFC; www.mtfc.com). MTFC is a multimodal approach in which foster carers receive extensive pre-service training and ongoing consultation and support from program staff. Children receive individual therapy and birth parents or other permanent placement resources receive parent training. RCTs from the Oregon Social Learning Center indicate that MTFC, when delivered to antisocial children who then return to their birth families, had a modest positive effect on behavior problems and on other psychological outcomes such as self-esteem and had large positive effects on social skills (Reddy, Hay, Murray et al., 1997). MTFC is currently being evaluated in 20 local authorities in the UK. RESIDENTIAL AND FOSTER FAMILY CARE 495 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 495

Although MTFC initially developed to provide an alternative to secure accommodation/incarceration for delinquent adolescents (Chamberlain, Price, Reid et al., 2006; Clark, Prange, Lee et al., 1994), more recent modifications for preschool children have also demonstrated success, particularly in terms of securing permanent placements (Fisher, Burraston, & Pears, 2005). In the Oregon MTFC model, for both adolescents and preschoolers, key elements of the program include foster carers having daily telephone contacts in which the child’s progress is reviewed systematically, weekly foster parent support group meetings and 24-hour on-call crisis intervention. Children have services of behavioral specialists who work in preschool or daycare and at home, and children attend a weekly therapeutic playgroup. A consulting psychiatrist provides medication management. When the child enters a permanent placement, a family therapist works to train the parents in the same parenting skills as foster carers, whether the birth parent, relative or non-relative adopter. The training, for both foster carers and permanent carers/parents, emphasizes encouragement for pro-social behavior, consistency, non-abusive limit setting and close supervision of the child. The preschool program also follows a developmental framework of helping carers understand delayed maturation and the program attempts to create optimal environmental conditions to facilitate developmental progress including a responsive and consistent caregiver and a predictable daily routine with preparation for transitions between activities (Chamberlain, 1995). The apparent success of TFC has prompted recent calls, in the USA, for an end to the use of “shelters” or “safe houses” where group care is used for crisis management, assessment and planning for children requiring substitute placements (Barth, 2005). Recent research has shown that ordinary foster care is superior to such group care (DeSena, Murphy, Douglas-Palumberi et al., 2005) and that TFC is superior for the most vulnerable children to ordinary foster care (Chamberlain & Reid, 1998), although this has not yet been proven for maltreated children who do not have serious mental health problems or risky behavior. Despite the evidence for TFC, its implementation in practice is not always easy, especially if placement goals are unclear. It requires a high level of co-ordination of services and success may depend on the ability of the model to span the multiple systems involved in these children’s lives (Meadowcroft & Thomlison, 1994). There has been considerable focus on risk behaviors, such as violence, as an outcome measure of TFC (Chamberlain & Reid, 1998; Hahn, Lowy, Bilukha et al., 2004), but this may not always be in the best interests of the child. In an evaluation of an intensive foster care scheme in Scotland, tensions were evident between social services’ desire to use the scheme for the reduction of risk behaviors before moving on to less intensive (and less costly) placements, and the desire by social workers, foster carers and young people themselves to allow young people to develop stable relationships rather than move on quickly (Walker, Hill, & Triseliotis, 2002). Leaving Residential and Foster Family Care Although this chapter might strictly concern the period children spend in residential or foster family care, the importance of the transition out of care and into independence must be recognized and will be referred to briefly in relation to recent UK studies. Clearly, the nature of childhood experiences prior to and during care will affect progress after care. As most young people leave care at around 16–17 years, they have to face the challenges of independent living earlier than their peers. Although a proportion of care leavers do well, those with worse outcomes are likely to have unstable living arrangements, difficulties in personal relationships, poor social networks, lack of involvement in education and training opportunities, unemployment and poverty. Coping with early pregnancy and parenthood is a common challenge. Black and mixed heritage children leaving care may have more difficulties in contact with family and community and difficulties are compounded for disabled children. Biehal and Wade (1996) showed that older ex-care young people rarely return to their birth families, at least not in the short term. Good relationships with them are often irretrievable following histories of abuse, neglect and rejection. Some young people, but by no means all, maintain continuing relationships with their foster parents, but this is less so with residential care staff. Leaving care schemes, mentoring and personal adviser projects designed to help in the transition to adulthood and independence have been developing and are beginning to be researched, but specified interventions to improve post-care life chances have not yet been rigorously evaluated (Dixon, Wade, Byford et al., 2006). Prospective studies are needed comparing matched groups receiving contrasting leaving care services and followed up at multiple time points. An important part of post-care services should be to attend to mental health needs by more intensive psychological interventions with special concern for problems of identity and self-esteem, establishing and sustaining social relationships, developing interpersonal problem-solving skills, managing emotional problems and controlling drug and alcohol use. Problems in providing accessible, acceptable mental health services to this group have been highlighted (Broad, 2005) and more progress is needed in promoting links between care leaving projects and specialist child and adolescent mental health services. Comparative Outcomes and Costs and Future Directions Studies Comparing Residential and Foster Family Care Outcomes It has not been possible to provide definitive answers as to the differential effectiveness of residential and foster family care. The review of studies by Curtis, Alexander, and Lunghofer (2001) highlighted the methodological weaknesses in studies CHAPTER 32 496 9781405145497_4_032.qxd 29/03/2008 02:50 PM Page 496

that have attempted to compare out-of-home care outcomes. The study by Chamberlain and Reid (1998) of adolescent delinquent boys is one of the very few to compare TFC with community-based group care using randomized allocation. It was established that the groups were equivalent on key variables, although the foster care group received more therapeutic help. More positive outcomes were recorded for the TFC group, including less criminality a year after discharge. The study by Roy, Rutter, & Pickles (2000) has helped to tease out the effects of prior problems from the effects of being in care by studying children from similar social environments who experienced two contrasting “in care” child rearing environments: either residential or family foster care. Both groups were compared with classroom controls and although both were more prone to hyperactivity/inattention, such a problem was substantially more marked in the group who had experienced residential care. The same applied to scholastic achievement (Roy & Rutter, 2006). A picture is emerging that genetic risk, early environment (both pre-care and state care environments) and poor educational provision may interact to compromise educational progress (Roy, Rutter, & Pickles, 2000). This in turn may have a negative effect on self-esteem and life chances. The Odyssey Project (Drais-Parillo, 2006) examined a large sample of over 2000 children and young people in either residential group care (RGC) or TFC on assessment, at admission, at discharge and 6, 12 and 24 months postdischarge. The RCG group was found to be older, more likely to be male, more ethnically diverse, with more psychiatric and criminal history. Although fairly good outcomes were reported for both groups, major sample attrition compromised the ability of the study to make valid post-discharge statistical comparisons. When definitive evidence is lacking, practitioners involved in making placement choices for young people will need to apply flexible decision-making, sensitive to the needs of the individuals. The quality of the care environment and the population residing in each placement type will need to be taken into account in making these choices. One recent study examined placement alternatives for children orphaned as a consequence of violence in Iraqi Kurdistan (Ahmad, Qahar, Siddiq et al., 2005). Those placed in traditional foster care (n = 94), indicating integration of the child into the family, mostly kin, were compared with orphanage children (n = 48) living in impersonal and regimented group care, but where contact with birth family members could occur. Efforts were made to achieve comparability of the groups on other factors. The mean age of the children was 11 years and 1 and 2 year follow-ups were conducted. Similar outcomes were found on many measures, including some deterioration, but improvement in problem profiles and traumatic stress scores after 2 years were found to be more significant in the foster care than the orphanage sample. The authors concluded that foster care provided more suitable conditions (“a natural family atmosphere”) and that the best policy was to support foster families rather than to build more orphanages. Cost-Effectiveness Considering estimates of costs alongside evaluations of effectiveness of psychosocial interventions is becoming more common and will deliver more useful evidence for service providers. (DeSena et al., 2005; Knapp, 1997; Minnis, Everett, Pelosi et al., 2006). In a recent study of costs in foster care, a tiny minority of children were found to be attracting a disproportionately high level of services and costs (Barth, 2005; Minnis et al., 2006). It may therefore be necessary to accept that the few most vulnerable children will require very expensive services. A recent cost-effectiveness comparison of placing children in group care versus family foster care placements in the USA has shown that family foster care is both more effective in terms of placement stability and considerably cheaper (Barth, 2005; DeSena et al., 2005). Residential care in the UK has been claimed to be seven times more costly than comparable foster care (Polnay, Glaser, & Dewhurt, 1997), but when full comparative costing is undertaken, including education, a smaller, four-fold difference has been reported (Curtis & Netten, 2005). Current average costs for statutory and nonstatutory residential care are in the region of £118,000– 121,000 per resident per year. TFC has been shown to be expensive, but cost-effective for very disturbed adolescents (Chamberlain & Weinrott, 1990). Foster family care may be cheaper and produce better outcomes in general, but where family-based care is not tenable, high-quality expensive welltargeted residential care may be the best option for some young people (Barber, Delfabbrol, & Cooper, 2001). Future Directions The evidence base is often lacking in order to support specific practice guidelines for out-of-home care. As little assessment has been made of the long-term adaptation of children once placed in out-of-home care, this hampers the ability to select the most promising placement according to the characteristics and history of the individual young person. Future studies, rather than simply comparing residential care with foster family care, could be conducted on appropriate sequences of residential and family foster care used flexibly and as required. However, we have sufficient findings about the mental health problems of this group of children to push forward with high-quality assessment linked to appropriate interventions. In the past, children in public care have had their mental health needs neglected and a major task is to ensure that these children have proportionate access to services. Interventions need to be evaluated using gold standard research techniques. At present, the gold standard is considered to be the RCT with health economic evaluation and, despite the logistical and ethical challenges of such research, attempts must be made to achieve this. Promising practices and service developments need to be defined more precisely and the specific characteristics and intensity of the approaches identified. Without this, effectiveness trials will be uninformative. 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compare with matched cases living in birth families with similar pre-care backgrounds. More research is needed to reveal the complex interactions of factors that predict placement outcome. More needs to be known about how long it takes, and to what extent, children with disadvantaged or abusive circumstances can catch up with their peers once placed in good quality out-of-home care. Further research is needed to reveal what principles and procedures should be followed for matching carers and children in order to produce the best outcomes. Despite efforts to keep children out of care, keep their families together, intervene early on when there are signs of poor quality or abusive parenting and conduct a wider search for possible placements with extended family and friends, some children will need to be cared for by the state and looked after by strangers. An expanding research base is needed on what kinds of placements produce what kinds of outcomes and for which children. 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502 Adoption is an increasingly common means of forming a family. Most broadly, it has contributed to a redefinition of the essential features of the nuclear biological family and come to be intertwined with other trends in family formation such as step-parenting, kinship care, parenting by gay and lesbian couples, and use of assisted reproductive technologies. These trends have raised some of the same issues as confronted by adoptive families such as the relative contribution of genetic, biological, social and psychological factors to child development. They also have translated the definition of family from a biological and ethnocultural concept to one that emphasizes family as psychological parenting of a child. Moreover, with the increase in open adoptions and the more rapid movement of children from foster care to adoption, many adoptive families are, in essence, multiple families with birth parents and sometimes extended birth families, maintaining contact with adopted children and their families over time. Searches for birth parents and reunions of adopted adolescents and adults are also increasingly common and represent another way that birth and adoptive families connect. The chapter begins with an update of these trends in adoption practices and families created with the help of assisted reproductive technologies. It then goes on to discuss the outcomes of domestic and intercountry adoption. Finally, both post-adoption and clinical services are discussed, highlighting the increasing attention paid by the professional community to adoption-related issues. Contemporary Trends in Adoptive Family Formation Sources of Children for Adoption For some time there has been a decline in the number of infants available for adoption domestically, accounted for by greater prevalence of single motherhood and legal avenues to control reproduction through birth control and abortion. This is coupled with a greater demand for children related to infertility associated with delayed childbearing and greater acceptance of non-traditional parents who are single, gay or lesbian. In comparison with domestic adoption, intercountry adoption continues to grow worldwide. Intercountry adoption originated with efforts to rescue children victimized by epidemics and other calamities such as war. More recently, intercountry adoption includes children abandoned because of poverty and population control policies and is now motivated by preference for adopting infants and/or children without apparent special needs and children who are not observably racially different, and for adoptions that are fully closed. The most recent estimates indicate that more than 40,000 children are adopted worldwide each year from over 100 countries (Selman, 2002). An important historical event was the establishment of the Hague Convention in 1993, which set out minimum rights and procedures for intercountry adoption. Thus, whereas the earlier years of intercountry adoption were clouded by irregularities in procedures and shady practices such as child abduction and trafficking of infants, procedures have become more regularized and integrated with those of the agencies or governments in countries where adoptive parents reside. The needs of children being adopted have also changed. Prior to the 1990s, most intercountry adoptees came from Korea, which had a high standard of living and health care, and where children were cared for in foster homes ( Johnson & Dole, 1999). Subsequent sending countries have not had such high standards. Typically, children have lived in institutions and experienced some degree of deprivation, which affects all areas of functioning (Gunnar, Bruce, & Grotevant, 2000). Currently, most international adoptions to the USA are from China, Russia, Guatemala, South Korea and Kazakhstan whereas most international adoptions in Europe are from China, Russia, Colombia, Ukraine and Bulgaria. To counteract the effects of deprivation, there has been a move toward increasing opportunities for foster care and implementing programs to improve the caregiving and environmental conditions within orphanages (Groark, Muhamedrahimov, Palmov et al., 2005). Open Adoption Up until 35 years ago, severing ties with the birth family was a natural prerequisite for forming an adoptive family. In this way, the genetic and psychological heritage of the adoptee was minimized in favor of adoption kinship. This practice also meant that members of the adoption triad (i.e., the birth parents, adopting parents and adopted child) were protected from the Adoption 33 Nancy J. Cohen 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 502 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

perceived stigma of adoption by the confidentiality of the adoption process. The intention was to create a situation in which all members of the adoption triad could get on with their lives. The reality proved to be otherwise and since the 1970s a gradual movement toward greater openness emerged, largely spearheaded by birth mothers. Some degree of openness in domestic adoptions is now becoming the norm rather than the exception (Grotevant & McRoy, 1997). The term “open adoption” typically applies to adoption of infants and refers to a continuum of contact and communication among members of the child’s adoptive and birth families (Grotevant, 2000). Openness became increasingly more possible once fewer infants were available for adoption and birth mothers could have a say in choosing the adoptive parents. Openness has been allowed to take various forms, although laws related to openness vary in different jurisdictions. At one end of the continuum are fully open adoptions that allow contact and communication directly between birth and adopted children and their families. There are also mediated arrangements where contact occurs through a third party, such as an adoption agency, without identifying information. At the other end of the continuum are fully closed adoptions where there is no contact, communication or shared identifying information. Once established, these arrangements are not carved in stone and it may be necessary to change contact arrangements over time (Berry, Cavazos Dylla, Barth et al., 1998). It is important to acknowledge that openness has been a negative experience for some adoptive parents who prefer closed adoption or who are repeatedly not chosen by the birth mother to parent her child. In order for openness to work, commitment, communication, flexibility and mutual respect on the part of both adoptive and birth parents are necessary (Grotevant, 2000). The best outcomes ensue when adoptive parents demonstrate high levels of empathy and sensitivity towards the child and the birth parent and are motivated to help the child integrate past and present experiences (Neil, Beek, & Schofield, 2003). This seems obvious but may be more difficult to keep in mind if rough spots in the relationship emerge. Ultimately, the arrangements must benefit and support the child. Mediated open adoption remains the most predominant arrangement (Henney, McRoy, Ayers-Lopez et al., 2003). There are practical implications for adoption agencies in that supports for educating birth and adoptive parents, mediating openness arrangements (e.g., amount and schedule of contact), and providing ongoing services to both birth and adoptive parents must be established (Maynard, 2005). It is still not clear what factors need to be taken into account and how to decide the best level of openness for a particular triad (Fravel, McRoy, & Grotevant, 2000). In a follow-up study of adolescents, Mendenhall, Berge, Wrobel et al. (2004) found that adolescents involved in adoptive arrangements in which there was contact with birth parents maintained higher satisfaction with contact status than those who did not have contact. Moreover, although many adolescents did not have contact with their birth fathers, when they did it was a positive experience. The benefits of openness, however, have not been fully established. Much of the research on openness has been carried out with infants who are relinquished voluntarily and there is little information on contact among groups of children and adoptive parents who were involuntarily removed because of abuse or neglect. Openness can be detrimental when birth parents make unrealistic promises or continue to perpetrate the physical and psychological abuse that led to the child’s removal in the first place. Although not specific to adoption, it has been shown that outcomes are worse when children continue having contact with violent fathers (Jaffee, Moffitt, Caspi et al., 2003). In a recent review, Rushton (2004) summarized the limited studies indicating that contact can be managed by adoptive families if they feel that they have control over the situation. Research on openness in older children in foster care who are adopted also suggests some benefits in promoting the child’s ability to accept the adoptive family and resolve the child’s loyalty conflicts. Given the increasing move from foster care to adoption, which is discussed next, more research is clearly needed. It is also important to acknowledge that there are many children for whom openness is not possible, most obviously, children adopted from other countries, and domestically adopted children whose birth parents have chosen closed adoption or where contact has been lost because the birth parent has died or disappeared (Sullivan & Lathrop, 2004). Brodzinsky (2005) has suggested that, in these cases, openness can be conceptualized in a different way as a state of mind rather than a concrete event. It is important to all adopted children to know that there is an openness in their adoptive families to actively consider the impact of adoption in their lives and on their emotions and affective attunement (Brodzinsky, 2005; Leon, 2002). Moving from Foster Care to Adoption: Adoption with Contact Current trends show an increase in the number of both infants and older children entering the foster care system and the length of time they spend there (see chapter 32; Shapiro, Shapiro, & Paret, 2001). These children often have been abused, neglected or otherwise stressed and traumatized. Some children are in and out of foster care and their birth family home numerous times before permanent plans are made. The numbers of children in foster care are of tremendous concern because they are more likely to exhibit behavioral and emotional problems (Simmel, Brooks, Barth et al., 2001). Historically, the policy for permanency planning was to return children to their family after steps were taken to ensure the child’s safety. Often this means that children remained in the limbo of foster care for years, sometimes growing to maturity in that environment or making repeated moves from their birth family to foster care. More recently, at least in the USA, the best interests of the child have begun to take priority such that permanency planning has been hastened toward adoption. About two-thirds of children are adopted by their unrelated ADOPTION 503 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 503

foster parents, which means that they experience continuity in relationships, 15% by relatives and 23% by families they have never known (Shapiro, Shapiro, & Paret, 2001). Because openness in adoption is generally more accepted, older children may have some limited contact with birth parents or information that can flow both ways. Approximately 15 years ago, Triseliotis (1991) made a strong case for adoption with contact with birth parents, drawing a parallel with findings indicating that children’s adjustment following divorce is related to consistent and ongoing relationships with both parents who are able to cooperate. When children lack contact, they also may continue to worry about their birth family. Opposing arguments usually claim that continuing contact will interfere with the child’s bonding to the new family. Where children have suffered severe abuse within the birth family, the question remains as to whether contact eases or is disruptive to adjustment in the adoptive home (Freundlich, 2002). There is some evidence that the time in foster care is shortened and the number of different placements reduced when a child advocate or caseworker oversees the child until permanency planning is achieved (Calkins & Millar, 1999). Kinship Care Care by family members is a long-standing tradition for children whose parents have died or could not meet their children’s needs. Use of kinship care has increased and is now used more frequently to reduce or eliminate a child’s stay in foster care. It has become part of the formal child welfare system associated with permanency planning (Brooks, 2002; O’Brien, Massat, & Gleeson, 2001). Kinship care has come about with changes in laws that permit family members to become foster parents and thereby gain financial support for care, the push toward rapid permanency planning, and the desire to keep children within their extended family and in the same ethnic and cultural community. For all of these reasons, on the surface, kinship care seems like an optimal solution. In the USA, children of color are most likely to be living in this situation with a single parent, usually a grandmother (Burnette, 1999), whereas in the UK kin carers are more likely to be white couples (Farmer, 2006). There are potential problems, however. For instance, children’s physical health and mental health are at risk if early experiences have been traumatic. Sometimes, family members have contributed to abuse directly or as part of an intergenerational pattern that may be repeated. There also is a risk that standards for placement are lower for kinship placements and that monitoring and services are not as complete as for foster care (Farmer, 2006). Furthermore, kin carers may have multiple stresses of their own that will impact directly on the child, and especially the capacity to cope with grieving and vulnerable children who may have a history of mistrust. Some kin carers do not even know the children who are suddenly thrust into their lives. Intervention with intergenerational families is often complex because individual, family and societal factors are at play. Both professional and financial supports are frequently necessary to stabilize the household (Burnette, 1999). Just as in any adoptive or foster situation, the quality of earlier experiences influences those that follow. The kin carers and the child must deal with loss while taking into account that the relationship with the birth parent may continue in some way and be an ongoing source of distress and disruption. Establishing an alliance with kin carers can be difficult for professionals because of issues of trust related to fears about loss of children into public care, especially in ethnic or poor families. Research has identified poverty, isolation, mental and physical health problems and high stress to be related to the degree of kin caregiving burden (Burnette, 1999). Generally, there is less support for kinship carers than for foster and adoptive families so that development of outreach services is an important undertaking. Transracial Adoption Transracial adoption is a long-standing controversial issue that remains salient in the public eye, and within some racial groups, despite research showing little reason for concern from the child’s or family’s perspective. Earlier research on this topic was largely focused on White family adoption of Black children but the racial mix in most countries has expanded, partly as a result of intercountry adoption. In a review of the literature, Lee (2003) noted that ethnic minority adoptees are portrayed as passive rather than active participants. Research typically asks about the impact of racial and ethnic experiences rather than the more important question of how adoptees act on their environment to negotiate identities and their place in society which, in the long run, is more important. Four patterns or strategies emerged from the literature that adopted children and their families pursue: 1 Cultural assimilation, in which adoptive parents reject or downplay differences; 2 Enculturation, which involves adoptive parents acknowledging differences within the family which promote children’s learning about their birth culture and heritage; 3 Racial inculcation, which involves adoptive parents teaching coping skills to facilitate their children’s capacity to deal effectively with racism and discrimination; and 4 Child choice, wherein adoptive parents provide their children with cultural opportunities but ultimately abide by their children’s interests (Lee, 2003). Longitudinal research has shown that, based on parent report, adjustment problems are no more common in adulthood among transracial than inracial adoptees (Burrow & Finley, 2004; Tizard & Phoenix, 1995). In the USA, a 19-year follow-up study of transracial adoptees as young adults indicated that females were better adjusted than males, and individuals adopted from Asia adjusted better than either African-Americans or Caucasian domestic adoptees. When international and domestic adoptions were combined, AfricanAmerican males were most prone to adjustment problems but inracial adopted Caucasian males had the worst outcomes (Brooks & Barth, 1999). Meta-analytic studies of intercountry adoption indicate that most transracial adoptees, domestic CHAPTER 33 504 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 504

or international, do not have serious behavioral or emotional problems (Bimmel, Juffer, van IJzendoorn et al., 2003; Juffer & van IJzendoorn, 2005). Bimmel et al. wisely point out that there is heterogeneity across samples and differences in conditions in various countries, adoption procedures and age at arrival. Thus, there may be subgroups of youngsters at greater or lesser risk for development of adjustment problems, making report of overall percentages unhelpful. Racial and ethnic identity development also varies according to children’s age and social and emotional development. Transracially adopted pre-adolescents tend to identify with birth cultures. For adolescents and adults, sense of race and ethnicity generally diminish but may become more ambivalent in some cases and more salient in others (Lee, 2003). When racial and ethnic experiences are positive, they contribute to good psychosocial adjustment (DeBerry, Scarr, & Weinberg, 1996). This is especially so when adoptive parents actively promote their children’s ethnic culture (Yoon, 2001). Some benefits also accrue to adoptive families living in racially heterogeneous communities (Feigelman, 2000). Contrasting results have been reported by Cederblad, Hook, Irhammar et al. (1999), who found that self-perceived negative racial and ethnic experiences were related to behavior problems, emotional distress and low self-esteem among transracially adopted youth in Sweden when family functioning and structure and support from friends were taken into account. Consistent with this, Hjern, Lindblad, and Vinnerljung (2002) found that rates of psychiatric disorder and social maladjustment were higher among transracial adoptees and immigrants than domestic adoptees and the general population. In Holland, Juffer, Stams, and van IJzendoorn (2004) found that adopted children’s wish to be White uniquely predicted mother-reported behavior problems. Such findings raise the question of whether there are national differences dependent not only on a history of racism, but also attitudes toward immigrants. From a clinical perspective, the takeaway message is that there is considerable variability in the psychological experiences and psychological adjustment of transracial adoptees which are dependent on the child, family and social milieu. In other words, it is prudent not to make assumptions but to ask questions; that is, to understand adoptive identity through narrative in both research and clinical practice (Grotevant, Dunbar, Kohler et al., 2000). Adoption by Non-Traditional Families Assisted Reproductive Technology Almost 30 years ago, science opened the door to a new opportunity for family formation through application of various forms of assisted reproductive technology (ART). The separation of conception from intimate sexuality, and the possibility of collaborative parenthood, have raised many questions similar to those regarding open adoption. There are some issues that differ between families who adopt and those who use ART although, in both cases, parents must confront feelings of loss and grief. The forms of ART have different implications for parents and children. Both in vitro fertilization (IVF) and intracytoplasmic sperm injection (ICSI) involve fertilization of an egg with the father’s sperm so that both parents are genetically related to the child. Donor insemination (DI) has been used in couples with an infertile male partner and by single or lesbian women or couples and involves insemination of banked sperm from an anonymous donor. Citing statistics from the Institute for Science, Law, and Technology Working Group (1998), Shapiro, Shapiro, & Paret, (2001) reported that as of that date approximately 75,000 babies were born annually through the use of ART, with 60,000 of these births resulting from DI and 15,000 resulting from the use of IVF in the laboratory. A further 1000 births per year occur through surrogate or gestational parenthood. According to these authors, twice the number of infants are born using ART than there are infants available for adoption at birth. The number has likely increased since these statistics were published. In these latter forms of ART, only the mother is related. In egg donation, there is a genetic tie with the father and not the mother. However, unlike DI where the donor is typically anonymous, egg donors are often relatives or friends of the parents and thus may have contact with the child over time. The final form of ART, artificial insemination surrogacy, also involves a situation where the father but not the mother is genetically related to the child. Again, the surrogate may be someone in the family or a friend who will have ongoing contact with the child. Both adoption and some forms of ART give a chance for parents to be selective about preferred child traits by reading physical descriptions and the donor’s family health history. In general, birth mothers pursue donors they believe to have positive inheritable characteristics such as good health, desirable physical and personal attributes, and intellectual abilities. Character also is thought to be important but birth mothers tend to believe that character is more a product of environment than genetics (Scheib, Kristiansen, & Wara, 1997), an assumption that genetic research would suggest is naive. To date, there is no evidence of problematic cognitive or socioemotional outcomes or that parent–child relationships are affected based on research on any of these forms of ART (Golombok, 2006; Golombok & MacCallum, 2003). However, a recent review concluded that there is heightened risk of birth defects following IVF or ICSI compared with spontaneously conceived infants (Hansen, Bower, Milne et al., 2005). A basic difference between adoption and ART is that in some forms of ART there is a genetic link with the child (with the exception of DI). Although the child is biologically linked with one parent, there may be some tension and feelings of loss within the marriage or between partners. There is an assumption that the emotional connection to the child will diminish any feelings of loss that may emerge. Couples do not only have to confront issues that arise between them, but also ADOPTION 505 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 505

must decide what to tell their children. In fact, one of the main concerns is that parents using DI tend to keep the means of conception secret from their child (Golombok & MacCallum, 2003). This is very much the opposite of common practice with adopted children, where the benefits of open discussion with children about their origins and feelings are widely acknowledged (Feast, 2003). Single, Gay and Lesbian Families Single women are choosing parenthood to an increasing extent. Some have an agreement with a known partner to conceive a child, others use ART and others adopt. A number of factors contribute to the choice including feelings about having a genetically related child, attitudes about an unknown sperm donor, comfort in undertaking infertility treatment if needed, carrying a child to term without the support of a partner, and a host of financial, religious and cultural issues. Research has shown that single-parent adoptions are successful and should not be compared critically to two-parent homes (Shireman, 1996). Brooks and Goldberg (2001) outlined strengths that facilitate adoption success, such as having support from family and friends, psychological stability, resourcefulness, sensitivity, educational success and financial security. Organizations such as Single Mothers by Choice also provide information and support. A small but growing number of single men are also choosing to adopt. Gay and lesbian adoption has expanded but is not universally accepted and varies even within regions of countries. Brodzinsky, Patterson, and Vaziri (2003) estimated that 2.9% of public and private adoptions in the USA involve children placed with self-identified gay and lesbian individuals and couples. However, this is likely to be an underestimate because not all individuals and couples identify themselves as gay or lesbian in their applications. For both single and gay or lesbian parents, establishing a close supportive relationship with their child or children will help the children cope with the special nature of their family and the questions and issues that emerge as they mature. There are a number of routes to gay and lesbian adoption. In some jurisdictions only older and other special needs children are available for adoption by gay and lesbian families. While international adoption from some countries is open to single parents, it is not consistently open to gay and lesbian parents, meaning that one parent often adopts as a single parent. This places the co-parent at a disadvantage in terms of legal parental status and accompanying practical matters in relation to health benefits and inheritance. Should the couple separate, the co-parent is also at a disadvantage in terms of custody, visitation rights and continuation of a relationship with the child (Horowitz & Maruyama, 1995). Similarly, when a child is born using ART, a decision must be made as to who carries the child, which may stimulate reactions in the couple and their extended families. As in heterosexual families, changes arising from pregnancy and childbirth may also upset the relationship. Particularly in lesbian relationships, both partners may feel equal in the mothering role but physiological changes in the mother giving birth, and the child’s possible preferential reaction to her, can disturb this sense of equality. Thus, parents in lesbian families may need guidance and support in negotiating their early relationship with their child at different developmental turning points. There are more lesbian than gay parents. Some gay couples also choose to form their families through adopting older and other special needs children or through ART with the use of surrogate birth mothers. Much the same as for lesbian mothers, gay fathers’ parenting compares well with that of single heterosexual fathers (Patterson, 2002). In this context, parenting includes encouraging children’s sexual identity as well as sharing child care and engaging in cohesive and affectionate family interactions. Again, a complicating factor is prejudice in the broader community. Gay and lesbian families likely benefit from becoming part of their community and known as individuals and as a couple before bringing a child into their home. In urban areas there are also likely to be support networks for gay and lesbian parents. Research on single and gay and lesbian families has focused on the impact of growing up in these non-traditional families on the children’s development and on the nature of the relationship between parents and children. There are often important psychosocial factors to take into account outside of the family constellation in such studies. These include the acceptance of neighbors, schools and religious institutions in the community where children can potentially encounter bias toward themselves or their parent(s), which complicates the developmental process. By and large, however, studies indicate that there are no significant differences in gender identity or gender role behavior, self-esteem or health of social relationships of children raised by gay or lesbian parents compared to children raised in heterosexual families. Moreover, they have not found the children to be vulnerable to psychopathology (Patterson, 2002). Furthermore, findings from a longitudinal study have shown that mental health and work status of adults raised by lesbian parents compared well with adults from heterosexual families (Tasker & Golombok, 1997). While these are generally positive findings, clinicians must be sensitive to the psychological health of parents and to the prejudice that single, gay and lesbian families may experience and support the family’s strengths. Clinicians also must become aware of their own biases. Opening the Birth Records: Search for Birth Parents and Birth Children Just as openness in infant adoption has become more normative, so too has the search for birth parents by adolescent and adult adoptees. Factors motivating a search include curiosity, looking for a sense of belonging, seeking medical information, developing a sense of personal identity, wanting more information about physical similarities, having an interest in what happened CHAPTER 33 506 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 506

to a birth relative (Howe & Feast, 2000) and being at a life cycle transition point (Campbell, Silverman, & Patti, 1991). In some cases, only non-identifying information is exchanged while in other cases there is ongoing personal contact. Interviews with adoptees who reunited with birth parents indicate that various types of relationships evolve following reunion (Gladstone & Westhues, 1998). However, in general, early contact usually diminishes in frequency and intensity over time and continues through letters or by telephone. A number of factors predict the outcome of reunions. Howe and Feast (2001) found that the emotional stability and security of either the adopted or the birth relative are paramount. While feelings of emotional closeness are important, other factors mediate the outcome of reunion including geography, perceived response of birth relatives or adoptive family members, sexual attraction and expectations that each party has of the others (Gladstone & Westhues, 1998). In a follow-up of adult adoptees 5 and 8 years post-reunion, regardless of the outcome of the reunion, most adult adoptees say that the search and contact experience was satisfying and worthwhile and that it helped to answer questions about their origins, background and the reason for being placed (Howe & Feast, 2001; Triseliotis, Feast, & Kyle, 2005; Wrobel, Grotevant, & McRoy, 2004). Of those who met their birth mother, 63% were still in some form of contact 8 years or more after their reunion (Howe & Feast, 2001). From the perspective of the birth mother, 94% were pleased that the adopted adult had contacted them (Howe & Feast, 2001). When asked to identify the hardest parts of the reunion process, all parties indicated that the waiting period prior to reunion and the adjustment period that accompanied the negotiation of the relationships afterward were the most difficult (Sullivan & Lathrop, 2004). For adoptive parents, fear of the potential loss associated with sharing their child with someone who they did not know was most threatening. It is also important to realize that choosing not to search can be positive (Wrobel, Grotevant, & McRoy, 2004). A widely held belief has been that only individuals who have an unsatisfactory relationship with adoptive parents want to reunite with a birth parent. Although a negative evaluation of adoption made it more likely that an individual would remain in contact with their birth mother, a positive evaluation of the adoption had no effect. Howe and Feast (2001) concluded that whereas many adopted people feel a need to know their genetic and genealogical background in and of itself, this does not imply a need, or even wish, for a relational connection that will supersede those formed in early childhood. Many individuals who are searching for birth parents or a birth child do not want interference from the public system, whereas some seek help. Gladstone and Westhues (1998) suggested that clinicians should become knowledgeable about the search process so that they can be a resource. It may be necessary for the adoptee to deal with guilt feelings regarding disloyalty towards their adoptive family. Aspects of a reunion experience may underlie other issues which an adopted person presents within therapy or counseling. Help may be needed to resolve conflicts associated with expectations, inappropriate behavior, role ambiguity and differences in attitudes or values. There are few social guidelines indicating the ways that these family members should behave towards one another and clinicians may be requested to help in negotiating the relationship. Finally, clinicians can help the adoptee to deal with the reality of post-reunion relationships and their outcomes. Children born through ART will likely be interested in their heritage for the same reasons adoptees are (Feast, 2003; Howe & Feast, 2000). There is no legislation at this time to protect children’s right to search in the way that adoptees can (Golombok, 2006). There are also legal issues with ART, with the donor legally absolved of all parental responsibility and assured that identity is safeguarded. The rights of donorconceived individuals to access to information regarding their genealogical heritage is increasingly being voiced and some donors do agree to be contacted when the child reaches 18 years of age. In England, the Human Fertilization and Embryology Act, 1990 allows inquiry regarding whether an individual is genetically related to the person they plan to marry but information on heritage or genetic history is not available. However, there are websites designed to unite children who share a donor and therefore a genetic link (http://www. donorsiblingregistry.com). This has also become the practice in families adopting internationally, some of whom search for siblings of abandoned children through DNA matching (e.g., http://www.kinsearchregistry.com/index.html). Thus, although a direct link with parents may not be possible, families are looking at alternative ways of acknowledging other biological connections for their child. Outcomes of Adoption: Factors Contributing to Risk and Resilience It is recognized that there are various pathways to development and adjustment. These are determined by an ongoing transaction between genetically influenced strengths and vulnerabilities, prenatal factors, premature birth and associated complications, and early growth promoting and traumatic experiences such as abuse or neglect. These are critical, especially in children adopted late (Haugaard, 1998; Howe, 1997). Studies of adopted children have been used to understand that genetic factors are important but do not fully explain heightened risk. For instance, although children born to parents with psychiatric and antisocial disorders are at higher risk for psychopathology, this is most likely if such disorders and/or associated psychosocial adversity are also present in the adoptive family (Peters, Atkins, Marc et al., 1999), a situation that is relatively uncommon (because of the screening of people wishing to adopt). A more plausible explanation is that adopted children who are at genetic risk for antisocial behavior exhibit some characteristics that draw more negative control from parents than those children not at risk (O’Connor, Deater-Deckard, Fulker et al., 1998). Furthermore, ADOPTION 507 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 507

longitudinal research suggests that genetic influences increase and shared environmental influences decrease in terms of cognitive ability. More specifically, although the cognitive and behavioral style of young adopted children is congruent with that of adoptive parents, by adolescence these styles diverge (O’Connor et al., 1998) and children make choices and select opportunities that may suit their genetic disposition (Scarr & McCartney, 1983). Adoptive parents typically put high value on achievement and the power of the environment and of their capacity to shape their children’s future. This may lead to frustration and conflict later in development as it has been a long-standing finding that one of the most important predictors of adjustment of adopted children is the capacity of parents to set realistic expectations for their child (Barth & Berry, 1988). Biological factors such as nutrition, limited medical care for the child and birth parent, and prenatal exposure to drugs and alcohol are documented risks (Barth & Brooks, 2000; Moe, 2000). Even if children experience adequate caregiving, biomedical risks associated with prenatal drug exposure are still a potential determinant of specific developmental problems (Moe, 2000). Early disruptive life experiences, including a history of multiple placements prior to adoption, and a history of abuse or neglect also have serious consequences for developing adjustment problems (Dance & Rushton, 2005; Howe & Fearnley, 2003). Findings regarding the specific prevalence of adjustment problems vary across studies but, for instance, Dance and Rushton (2005) report that of domestically late placed adoptees, 49% had a positive outcome, 28% were difficult but continuing and 23% disrupted. We now know that some children facing negative life circumstances are more resilient than others. Genetically shaped characteristics such as intelligence and easy temperament are protective factors as well as having a sense of curiosity, a feeling of personal control and prior experience in establishing a close interpersonal relationship (Masten, 2001). Another protective factor, of course, is adoption into a positive family environment. Outcomes of Domestic Adoption The positive outcomes for domestically adopted infants have been well documented in relation to both development and attachment security (e.g., Singer, Brodzinsky, Ramsay et al., 1985). However, there is a shortage of healthy infants for adoption. Older children coming into care continue to be available for adoption in large numbers. These children have been identified as “special needs” adoptions, not only because they are older but because they often have cognitive, physical, emotional or behavioral problems that can make adoptive parenting more challenging. The preponderance of research indicates that, despite inauspicious beginnings, the majority of adopted children with special needs and their families have a positive outcome. For instance, analysis of data from the National Longitudinal Study of Adolescent Health indicated that background characteristics, early maltreatment, peer and family relations were associated with antisocial behavior but that adoption status contributed little or no additional predictive power (Grotevant, van Dulmen, Dunbar et al., 2006). There is also accumulating evidence that satisfying attachment relationships do develop among late placed children and their adoptive parents within the first years of adoption, which supports the resilience of children when offered experiences that promote social–emotional growth (Rushton & Mayes, 1997). Two meta-analytic reviews of both domestically and internationally adopted children’s cognitive, behavioral and emotional outcomes put these findings into clearer perspective. Van IJzendoorn, Juffer, and Poelhuis (2005) concluded that adopted children performed better than left-behind nonadopted siblings and peers but lagged behind non-adopted environmental peers and siblings. Although adopted children’s cognitive skills were in the average range and similar to current peers, there was a two-fold increase in special education referrals for learning problems for the adopted children. In a meta-analysis of emotional and behavioral problems, Juffer and van IJzendoorn (2005) showed that adoptees exhibited more behavioral and emotional problems. For both cognitive development and behavioral and emotional problems the effect sizes were small. However, adoptees were overrepresented in mental health referrals. Thus, adoption is an effective intervention that improves behavioral, emotional and cognitive development. Adoptive families likely seek help because they have a lower threshold for referral for mental health services both because of their expectations of their children and because they tend to be people who utilize services (van IJzendoorn, Juffer, & Poelhuis, 2005). At the extreme, disruption of adoptive placements has been associated with the child’s age at placement, length of time in care, the number of moves and returns to the birth home, the child’s level of behavior problems and inattention/ overactivity, preferential rejection by birth parents, and the child’s ability to show signs of attachment to their new family (Dance & Rushton, 2005; Rushton & Dance, 2003). In contrast, children with identifiable developmental or physical disabilities have fared well (Glidden, 1991). Haugaard (1998) strongly advised clinicians not to generalize the risk of adjustment problems to the entire adopted population, as it is applicable only to a small subset of adopted children. Similarly, Hodges, Steele, Hillman et al. (2003) found that, during their first year of adoption, children who had been maltreated showed an increase in mental representations of adults helping and limit-setting and being aware when children needed them. When older children do have behavioral and emotional problems, it is important to recognize the unique histories that they bring to their adoptive families. When raised in environments of abuse, neglect and rejection, children develop strategies to ensure survival that make them ill-equipped for loving and responsive care. Many of these children are unable either to elicit sensitive care or to respond to it, which raises the risk that the adoptive famCHAPTER 33 508 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 508

ily will feel rejected or punished by the child. Such findings reinforce the need for parents adopting older children to receive help to set realistic expectations, to understand their children’s needs, and to appraise both their own and their child’s contribution to the relationship (Stovall & Dozier, 1998). Rushton, Mayes, Dance et al. (2003) followed the development of new relationships and the presence of behavioral and emotional problems in domestically adopted 5- to 9-year-old children placed with adoptive families. A relatively small proportion failed to form an attachment relationship with one or both parents by the end of their first year in placement (27%) but they were more likely to exhibit behavioral problems. Some of the ways that these children interact and show their emotions (e.g., false affection, superficiality and distancing behavior) may be misperceived by parents, who take the behavior at face value rather than as defensive actions. Outcomes of Intercountry Adoption Reports from a number of countries confirm the positive outcome of intercountry adoption. Most intercountry adoptees have lived in institutions of varying quality prior to adoption, deprived of health care, optimal cognitive and social stimulation, and individualized attention which may have observable effects for months or years following adoption (Kreppner, Rutter, Beckett, et al., 2007; Rutter, 2005). Intercountry adoptees are at risk for infectious diseases and other health and neurological problems, often not diagnosed until parents bring their child home (Johnson, 2000). Malnutrition and inadequate stimulation are also common, leading to children weighing less, being shorter and having a smaller head circumference than children raised in birth families or adopted domestically (Mason & Narad, 2005). Fortunately, most of these problems can be managed with appropriate medical and dietary intervention (Johnson, 2002; Mason & Narad, 2005). The rate of catch-up growth depends on the quality of early experience and the age at adoption. Thus, children adopted younger, and from presumably less depriving conditions, such as those in institutions in East Asia and China, grow rapidly within the first 6 months after adoption (Cohen, Lojkasek, Yaghoub Zadeh et al., in press; Miller & Hendrie, 2000; Pomerleau, Malcuit, Chicoine et al., 2005) whereas for children adopted later from more depriving environments catch-up growth takes longer (Rutter, O’Connor, & the ERA Study Team, 2004). It is important to note, however, that two years after adoption, at approximately 3 years of age, the physical measurements of children adopted from China were still lower than those of non-adopted comparison children (Cohen et al., in press). Problems with cognitive, motor and language development are common in children who have experienced institutional care and are dependent on the length of institutionalization (Ames, 1997; Cohen et al., in press; Marcovitch, Goldberg, Gold et al., 1997; Miller & Hendrie, 2000; Pomerleau et al., 2005; Rutter, O’Connor and the ERA, 2004). At one extreme are children adopted from Romania at the fall of the Ceausescu regime in 1989. Whereas some children adopted later than 6 months of age made remarkable gains, most showed marked delays that persisted, even up to 7.5 years postadoption (Beckett, Maughan, Rutter et al., 2006; Croft, Beckett, Rutter et al., 2007). In fact, by the age of 11 years, outcomes for children deprived for 6–12 months were similar to those who had been deprived longer. These findings for children who had been profoundly deprived suggest both a sensitive period for development and limits on the effects of exposure to a stimulating environment as there were no differences in adoptive family characteristics. At the other end of the continuum are children adopted from China and other East Asian countries who experienced less severe deprivation. For instance, when Cohen et al. (in press) followed children who were, on average, 13 months of age at adoption, from the time of their arrival to Canada and then 6, 12 and 24 months later, rapid gains were made within 6 months. By this time children were functioning within the average range in cognitive, motor and language development, a pattern also observed at 6-month follow-up by Pomerleau, Malcuit, Chicoine et al. (2005) in children adopted between 6 and 18 months from China, East Asia and Russia. Although there were rapid changes, Cohen et al. (in press) found that the children adopted from China did not catch up to nonadopted peers from similar family backgrounds until 2 years post-adoption. Taking a broad view of the literature on intercountry adoption, the meta-analysis carried out by van IJzendoorn, Juffer, & Poelhuis (2005) on cognitive development and achievement of adopted children also included intercountry adoptees. That review showed positive outcomes for children adopted younger than 1 year of age. The importance of establishing secure attachment relationships is widely recognized. Similar to infants adopted domestically, intercountry infants adopted before focused attachment occurs do not exhibit difficulties (Juffer & Rosenboom, 1997; Stams, Juffer, & van IJzendoorn, 2002). Moreover, even children previously institutionalized in Romania were able to form a secure or insecure attachment relationship with adoptive parents within a few years after adoption, and there was no evidence of children being unattached (Chisholm, 1998; O’Connor, Marvin, Rutter et al., 2003). At the same time, there is agreement that in institutional settings children rarely have the sort of individualized positive interactions with caregivers required to meet emotional needs. Some older placed children who were adopted from Romanian institutions were at increased risk for atypical maladaptive behaviors such as indiscriminate social behavior, characterized by affectionate or friendly behavior towards all new adults, including strangers, with lack of the caution exhibited by non-adopted family reared children (Gunnar, Bruce, & Grotevant, 2000; MacLean, 2003; Rutter, Colvert, Kreppner et al., 2007). Surprisingly, neither age at adoption nor the length of time in institutional care was related to the quality of attachment insecurity (Chisholm, 1998; Judge, 2004). ADOPTION 509 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 509

Rather, insecure attachment was associated with lower child IQ scores (Chisholm, 1998; Judge, 2004), a higher degree of behavioral problems (Chisholm, 1998; Marcovitch et al., 1997), adopting more than one child at a time (Ames & Chisholm, 2001) and high levels of parenting stress (Chisholm, 1998). The few studies of attachment in intercountry adoptees have considered outcomes 1 year or more after adoption. One study has examined the process of attachment formation from arrival among infants adopted from China. Among the children who were, on average, 13 months of age at the time of adoption, Pugliese (2006) found that within weeks of being adopted there were signs of forming an attachment, based on mother-completed questionnaires, interviews and mother–infant observation. Interviews at bi-weekly intervals showed a gradual increase in attachment behaviors over time. Although in the first month with their adoptive parents, some infants showed atypical or extreme patterns of behavior (e.g., showing attachment behavior in nonstressful situations), for the most part these disappeared by 6 months post-adoption. Like their domestically adopted counterparts, intercountry adoptees who experienced poor institutional care are at greater risk for behavioral and emotional problems than those who experienced less extreme early care (Ellis, Fisher, & Zaharie, 2004; Hoksbergen, Rijk, van Dijkum et al., 2004; Verhulst, 2000a,b). Some different patterns of symptoms were observed among children adopted from Romania, a form of inattentiveness/overactivity and autistic-like symptoms (6%), which were qualitatively different from attention deficit/hyperactivity disorder (ADHD) or autism observed in western clinical settings and which might have been an outcome of institutional care (Kreppner, O’Connor, Rutter & the ERA Study Team Group, 2001). The latter symptoms, along with disinhibited attachment and cognitive impairment, were associated with social and emotional difficulties at the age of 11 years only in children who had experienced institutional deprivation for longer than their first 6 months of life. There was also an increase in emotional, but not behavioral, problems when children were followed from age 6 to age 11 years with evidence that difficulties with emotion recognition might have a role in the emergence of these problems (Colvert, Rutter, Beckett et al., in press), something that would not have been easily observed when the children were younger. Again, using meta-analysis to examine intercountry adoptees, whereas adoptees from a wide range of countries had more behavioral and emotional problems compared to domestically adopted children, the effect sizes were small (Bimmel et al., 2003; Juffer & van IJzendoorn, 2005). Thus, most children were well adjusted despite many having experienced poor institutional care. Moreover, intercountry adoptees had less severe emotional and behavioral problems and were less likely to be referred for mental health services than domestic adoptees. Juffer and van IJzendoorn (2005) speculate that the sources of emotional and behavioral disturbance among intercountry adoptees may be different than for domestic adoptees. Intercountry adoption comes about because children are given over to institutions for economic or political reasons rather than genetic or prenatally determined risk factors or removal from birth parents because of abuse or neglect. Intercountry adoptees also exhibit other types of behavior problems such as problems with eating (Ames, 1997; Beckett, Bredenkamp, Castle et al., 2002; Johnson, 2002), stereotyped and self-stimulating behaviors, pain agnosia and tactile defensiveness with hyper- or hyposensitivity to touch, light, sound, smell and taste (Ames, 1997; Beckett et al., 2002; Fisher, Ames, Chisholm et al., 1997; Groze & Ileana, 1996). It has been presumed that these atypical behaviors arose as a response to experiencing a depriving environment in institutional care and were adaptive within that context (e.g., self-soothing in times of distress). Such problems tend to be transitional and decline during the post-adoption period (Ames, 1997; Fisher et al., 1997; Johnson, 2002). Nevertheless, 40% of previously institutionalized Romanian children continued to display some of the stereotyped behaviors 3 years post-adoption, 18% continued to rock at 6 years of age (Ames, 1997; Beckett et al., 2002) and 15% still had difficulties with eating solid foods at 6 years of age (Beckett et al., 2002). Moreover, among adoptees who had experienced institutional deprivation, about 1 in 10 show a pattern of autistic-like behavior in the British study of adoptees from Romania (Rutter, AndersonWood, Beckett et al., 1999; Rutter, Kreppner, Croft et al., 2007). There is little known about adjustment in intercountry adoptees in adulthood. In a survey of a mixed group of intercountry adoptees, Tieman, van der Ende, and Verhulst (2005) found that although the majority of adults, ranging in age from 22 to 32 years, did not show serious mental health problems, there was increased risk among children raised in high socioeconomic class families, possibly because of the unrealistic demands and expectations set by these parents. They also noted that those adoptees who could not be contacted or who dropped out of the study earlier had initially higher problem behavior scores. Thus, the study may have underestimated the risk for mental health problems in adult intercountry adoptees. Selection, Preparation and Assessment of Adopted Children and Adoptive Families Whether a child is adopted from a public, private or independent agency, attention is paid to assessing adopters to ensure that children will be safe and that relational support and educational opportunities will be provided. In parents, personal qualities such as warmth, mental health and parenting capacity and style are taken into account. Parents’ own attachment histories are not systematically assessed but Steele, Hodges, Kaniuk et al. (2003) found that 3 months after adoption, children whose adoptive mothers showed signs of insecure attachment exhibited aggressiveness in their themes to a story CHAPTER 33 510 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 510

completion task relative to children adopted by mothers with secure attachment responses. In older children, a rather illdefined criterion regarding whether a child wants and feels ready to be adopted is also considered. The process of adoption is especially complex for children who are older at adoption, have a history of abuse, and birth parent history of drug and alcohol use. In domestic adoption, the needs of both child and family are addressed through arranging multiple visits of increasing length so that the prospective parents and children can get to know one another, gain comfort and make a gradual transition to adoptive family life. Group meetings for prospective adoptive parents are arranged to provide information, talk with experienced adoptive parents and air potential risks in the adoption process. These have gone some way to challenge unrealistic expectations. Moreover, in some cases information is targeted for particular subgroups, something that is common in agencies arranging special needs and intercountry adoptions. Families of both domestic and intercountry adoptees are generally dissatisfied with the amount of information provided prior to adoption and some feel that they were not fully aware of the difficulties they would face. Showing parents of domestically adopted children videos of children available for adoption is becoming a common practice. Some internationally adopted children also have a pre-adoption video for prospective adoptive parents to review with a physician before making their commitment to adoption (Boone, Hostetter, & Weitzman, 2003). The value of this review is that the clinician can help parents to understand the consequences of prolonged institutional care and other risk factors. For instance, a video can help to identify dysmorphic features associated with fetal alcohol syndrome and genetic or neurological disorders. Boone, Hostetter, & Weitzman (2003) found that estimates of development from the video were correlated with direct assessment of child development post-adoption. However, this procedure cannot estimate relational differences between children. It is important to highlight that assessment of some critically important adoptive parent qualities may be difficult prior to adoption. These qualities include flexibility in setting realistic expectations and understanding not only the importance of attachment relationships but also that some of the children’s behavior problems may actually be an indirect way of getting closer. Dance, Rushton, and Quinton (2002) found that adoptive parent characteristics such as warmth, the ability to deal with both the facts and the effects of children’s early experiences, and the competence to manage child behaviors, assessed immediately after placement, were related to outcome one year post-adoption. Even more important was the nature of the relationship that emerged over this period. Among children aged 5–11 years who had been preferentially rejected by their birth parents, an important predictor of maladjustment in the first year post-adoption was false display of affection by the child early in placement and not the level of behavioral difficulties. Moreover, lack of warmth and sensitivity in parent interactions was heightened when the adoptee had problems with attention and affect regulation (Rushton, Dance, & Quinton, 2000). It was recommended that these children should be flagged for more intensive work in the preparation of parents and in post-adoption services. Mistrust of relationships, low self-esteem, anger and fear of abandonment all contribute to the likelihood of significant child psychopathology during the transition to adoption and unresponsiveness to parents’ bids for closeness. Parents may need guidance in evaluating their child’s behavior and finding the right level of interaction to sensitively read their child’s signals and to pace their efforts in forming a relationship. This is notable because in their sample Rushton and Dance (2006) found that more than one-third of children had ongoing difficulties 6 years later. Such findings heighten the need for post-adoption services as a routine part of the adoption process. Post-adoption Services It is not possible to prepare parents for everything that they will encounter once a child joins their family. Parents often minimize genetic and prenatal physiological conditions in favor of a family systems explanation for maladaptive behaviors and do not acknowledge the potential limitations of the postadoption environment (Barth, 2002). Pinderhughes (1996) has described four stages through which families move in the process of including a child with special needs: anticipation when the family looks forward to the child’s placement with the accompanying expectations and fantasies; accommodation to a child who may test limits and, in doing so, disappoint parents’ expectations; resistance when family members experience ambivalence; and restabilization when the family achieves a new equilibrium where expectations and reality are more closely matched. Parents adopting children internationally, although prepared by adoption agencies, may not be fully aware of the long-term effects of institutional rearing and go through their own adjustment stages. Moreover, parents need to be made aware that they should limit contact with other adults in favor of maximizing opportunities for parent–child interaction and generally avoid overstimulating the child with too many toys and outings. As well, toys should be purchased that fit the child’s developmental level rather than age. For both domestic and intercountry adoptions, a comprehensive assessment should be carried out once children join their adoptive families, and include a thorough medical examination, a developmental assessment of cognitive, motor and language ability, and observation of the child in structured and unstructured situations. Observations should consider the child’s predominant affective tone, curiosity, involvement in particular situations, sharing of activities with others and reaction to transitions (Weitzman, 2003). Functional rather than standardized evaluations are preferred, and interpreters should be available for children over the age of 3 years in order to evaluate language competence. Behavior problems, including unusual behaviors (e.g., rocking and other self-stimulating ADOPTION 511 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 511

behaviors) and, for older children, aggressive behavior and inattention should be recorded. Parents should be encouraged to seek help when it is needed ( Johnson & Dole, 1999). There is a long-standing awareness of the need to provide health focused post-adoption services early in the adoption process with a view toward easing the transition and preventing difficulties down the road, especially in families adopting children with special needs. It is not possible to talk about post-adoption services in a unitary fashion. The expanding variety and needs of adoptive families call for multiple forms of support and co-ordination of services. In the UK, a survey of local authority adoption services in the year 2000 led to the development of new adoption support services (Rushton & Dance, 2003). In the USA, this happened as a result of the President’s Adoption 2000 initiative (cited by Shapiro, Shapiro, & Paret, 2001). For example, Juffer, Hoksbergen, Riksen-Walraven et al. (1997) compared two short-term programs directed at promoting maternal sensitive responsiveness in international infant adoptions. One involved giving participants a book that focused on sensitive parenting and a second that involved using the book in conjunction with three video-feedback sessions. Intervention effects were observed in relation to an untreated comparison group in maternal sensitive responsiveness, infant competence and infant–mother attachment in the group receiving both the book and video feedback ( Juffer et al., 1997) and a lower rate of disorganized attachment in infancy (Juffer, Bakermans-Kranenburg, & van IJzendoorn, 2005). When the children were followed at the age of 7 years, both boys and girls who had received the intervention showed less internalizing behavior problems and girls showed greater ego-resiliency (Stams, Juffer, van IJzendoorn et al., 2001). Other programs have been directed at dealing with the transition to adoption (Cohen & Duvall, 1996) and with behavior problems in older adopted children, especially those who have experienced trauma associated with an early family history of abuse, neglect and multiple moves (e.g., Dozier, Albus, Fisher et al., 2002; Rushton, Monck, Upright et al., 2006). Some systematic post-adoption services for these children are currently being tested. For instance, Rushton et al. (2006) are comparing two manualized interventions for parents adopting older children in relation to routine support services. One is based on cognitive behavior modification that focuses on dealing with understanding the current meaning of challenging behaviors and ways of dealing with these. The second is an educational model based on understanding the meaning of children’s behavior from a historical point of view, focusing on broken or distorted attachments and the child’s coping mechanisms. Unfortunately, there are not yet empirical data on the outcome of these services. In a survey of post-adoption service use, Brooks, Allen, and Barth (2002) found that less than 30% of adoptive families used post-adoption services although a higher percentage read books and articles on adoption (82%) and attended lectures or seminars (43%). These latter activities were the most accessible as families could pursue them on their own, something that may be most appealing to the educated parents likely to adopt. Although books and lectures can be helpful, they are neither geared to the families’ individual needs nor are they experiential. Independent adopters made the least use of post-adoption services, most likely because they involve fewer children with special needs. Nevertheless, given findings that adoptive parents are more likely to use services, a potential need for specialized post-adoption consultation and intervention continues to be valid. Families involved in kinship adoptions and in various open adoption arrangements have different post-adoption needs to those involved in extrafamilial adoptions. Moreover, the increase in open adoptions and various other forms of adoption with ongoing contact with the birth family has accelerated a need for continued mediation between adoptive and birth parents. This raises a need for systematic study of programs for these families. Picking up the thread of openness in adoption as a state of mind as well as a set of actions, an important health focused post-adoption activity that contributes to promoting mental health for all adopted children, but is often overlooked, is preparation of a Life Book. This provides children with a sense of their own personal histories and an acknowledgement of the positive value that adoptive parents place on that history. Optimally, child protection workers who take domestically adopted children into care collect background information and mementoes for children from birth or foster families, but this is sometimes overlooked. One might assume that children adopted as infants or adopted internationally, some of whom were abandoned with no clues as to birth parenthood or history, cannot have a Life Book. However, there are creative suggestions in both books and websites that provide ideas of how to construct a history for the child. For instance, information about the town where the child was born, where the institution was located, current events on the day of the child’s birth obtained from a newspaper archive, photos, a narrative about the transition to adoptive family life, and older children’s drawings of what they imagine about their birth family are examples of what can be included (http://www. [email protected]). There is also need for health focused post-adoption services at later points in the post-adoption life cycle. Brodzinsky (1987) has suggested that for children adopted as infants there are key turning points related to shifts in cognitive development and consequent understanding of the meaning and implications of adoption. One turning point comes in the early school years, around the ages of 6–7, when children first truly understand the meaning of adoption. Another turning point is in adolescence when thoughts about their own reproductive future and life choices give rise to adolescents’ questions about their identity. Sometimes they decide to meet or know more about the birth family or, in the case of ART, the donor. Changing needs with respect to provision of and discussion about different types of information (Wrobel, CHAPTER 33 512 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 512

Kohler, Grotevant et al., 2003), response to emotions evoked at life transition points (Brodzinsky, 2005) and styles of coping with birth parent loss (Smith & Brodzinsky, 2002) are important content for post-adoption services for these children and youths. It is impossible to prepare parents for these possible reactions when children are very young or at the beginning of the adoption process. Consequently, it is essential that mental health professionals be aware of these turning points so that they can provide resources to meet the changing needs of adoptive families. Clinical Services Adoptive parents are more likely to seek services some time after adoption has occurred when they encounter difficulties within their families, in relation to their children’s behavior or in attachment relationships. These problems have been conceptualized in different ways relating to behavior management, family systems and attachment theory, and parenting style, which have been used to shape clinical as well as postadoption services (Cohen & Duvall, 1996; Juffer et al., 1997; Rushton et al., 2006). Attachment research has been influential in providing advice to parents about how attachment behaviors can sometimes be displayed in unexpected ways. For instance, from reviewing 83 clinical referrals of parents and their adopted foster care children, Lieberman (2003) found that parents often missed subtle attachment cues and misinterpreted defiance and temper tantrums as signs that the child did not care for them. It is a difficult task for parents both to acknowledge their children’s displays of attachment behavior and provide appropriate warmth and support while, at the same time, being able to set limits in a non-rejecting firm way. Thus, the adoptive parent must consciously teach attachment skills to the child, as the feeling of being wanted does not come automatically to a child who has never known love and care. Clinical services need to educate adoptive parents on the psychological and emotional challenges of children deprived of a consistent and reliable attachment figure during their formative years. They also need to provide guidance and experience with interpreting and appropriately responding to children’s emotional needs. For the most part, post-adoption and clinical services are focused on helping children to develop selective attachment relationships. This is achieved by facilitating sensitive responsive and pleasurable interactions between parent and child and increasing parents’ ability to be good observers of their child’s behavior. However, these services have not been specific to adoption (e.g., Cohen, Muir, Lojkasek et al., 1999; Juffer et al., 1997; Lanyado, 2003; Lieberman, Silverman, & Pawl, 2000). It is also important to note that these interventions were developed for young children. It remains a challenge to devise parallel interventions for older children and adolescents (Cohen & Duvall, 1996). Moreover, in any intervention, some individuals are likely to benefit more than others. Thus, it is notable that outside of the adoption literature it has been observed that mothers’ own attachment style is related to their response to particular forms of therapy; something that should be taken into consideration in therapy with adoptive families and in research (Bakermans-Kranenburg, Juffer, & van IJzendoorn, 1998). Even when children develop attachment relationships with parents, they continue to have problems in peer relationships that extend into the school years (Hodges & Tizard, 1989; LeMare, 2004). O’Connor and Zeanah (2003) suggest that symptoms of attachment disorder that extend beyond primary caregivers to peer relationships should be a focus of treatment. For instance, group therapy for adopted children is becoming more common (Nickman, Rosenfeld, Fine et al., 2005). For children with severe attachment problems (e.g., reactive attachment disorder) there is little by way of systematic study of treatment outcomes. A dual focus on attachment promoting and behavioral management interventions may be needed over a long period of time, recognizing that such attachments may not form at all or that they may not be achieved until adulthood (Howe, 1996). For children with severe attachment disorder, support groups for adoptive parents may be of benefit (O’Connor & Zeanah, 2003). Unfortunately, untested and potentially damaging forms of therapy continue to be used, many of which are touted on the Internet as providing certain cure. The most contentious of these is holding therapy, an intervention that involves close physical contact of a child with a therapist and/or parent. The rationale behind this is that it provides the child with the experience of touching and holding that is essential in the normative attachment process and helps to contain children prone to extreme distress or rage. Tragically, there have been at least six deaths from various forms of holding therapy. According to Hughes (1999), most therapists have now modified holding therapies by seeking the child’s consent to being touched or held and always including the parent in therapy. In any event, there are no empirical data suggesting that any form of holding therapy is effective. While parents need help in controlling children’s uncontrollable outbursts, this should not be confused with attachment and can be addressed with more conventional treatments for behavioral and emotional problems (Webster-Stratton, 2005). There is not a “one size fits all” intervention. As in any clinical service, it is essential to make a thorough assessment of factors within the child, parents and environment before proceeding. For the most part, the kinds of interventions that have been applied to birth families have been used with adoptive families, hopefully with sensitivity to particular issues that adoptive families may bring to the fore. Moreover, while helping parents set realistic expectations may be important in any therapy, this may be an especially salient issue with adoptive families. Finally, it must be recognized that in some cases therapeutic interventions need to be long-term and multimodal without promise of a desired outcome. Adoptive parents who are used to finding effective solutions to problems may be frustrated with the apparently impervious nature of their children’s problems. ADOPTION 513 9781405145497_4_033.qxd 29/03/2008 02:51 PM Page 513

Adoption and the Professional Community In the past, the professional community was criticized for being insensitive to the needs of post-adoptive families (Nickman & Lewis, 1994). There has been a welcome growth in the private sector in attending to the specialized needs of post-adoptive families. Professionals working in the adoption field also are increasingly involved in setting a curriculum and developing training models, and training a range of other professionals engaging with adopted children (American Academy of Child and Adolescent Psychiatry, 2005; Chamberlin, 2005; Dozier et al., 2002; Palacios & Sanchez-Sandoval, 2005). Some specialized medical clinics for intercountry adoptees have been established that provide thorough medical and developmental examination, review records to identify potential risk factors, and observe the child to determine affective tone, involvement in testing, quality of relationship with the examiner and adoptive parents, and atypical behaviors. It is important to follow closely intercountry adoptees on all of these fronts. While these clinics assess and monitor children, they typically do not offer mental health services. Conclusions and Future Challenges Adoption has come to have an increasingly prominent role in the fabric of family life worldwide. The research base for many adoption-specific issues accordingly has broadened. Moreover, since the last edition of this book, there has been significant growth in the understanding of specific issues relevant to adoptive families by professionals. It is heartening to know that many prejudices surrounding adoption have been overcome although some remain around gay and lesbian adoption, for instance. Moreover, while there is greater acceptance of openness in adoption, for the most part, this has applied to children adopted as infants. One of the challenges in years to come will be to test forms of openness for children adopted under less benign conditions to determine whether there is value in contact with birth families who, for one reason or another, have not been able to provide proper direct care for their children. Furthermore, new issues will come to the fore as children conceived through ART (and especially DI) mature into adolescence and adulthood and consider searching for a biological parent. Given the large number of children available for domestic adoption who are older and have other special needs, there is a continuing challenge in moving children into a permanent arrangement and providing supports that will facilitate positive adjustment. There is also a challenge in testing the effectiveness of various practices. More research on the impact of intercountry adoption on children is also needed. There have been active efforts to improve the early lives of children in institutional care and there is now a fuller range of pre-adoption experiences to consider. Longitudinal studies are especially important to track the progress of children and families over time. It is essential not only to describe the outcomes for children adopted internationally, but also to provide information about the process of development and adjustment that will contribute to better preparation of families and establishment of post-adoption services. Finally, the systematic implementation and study of both post-adoption and clinical services tailored to the needs of adoptive families have been a long time in coming. There are now signs that these important tasks are under way. 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Clinical Syndromes IV 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 519 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

Many children show a persistent style of behaving in an impulsive, inattentive and restless fashion. The style can endure for many years, but tends to manifest in somewhat different ways at different ages. When the behaviors are severe they carry considerable importance for clinicians; most importantly, because extreme levels put children at risk for later antisocial adjustment, educational failure and aspects of personality dysfunction in later adolescence and adult life. Impulsiveness, inattentiveness and restlessness can also be very unpleasant for the caregivers, and for this reason constitute some of the most common reasons for clinical referral during the school years. This chapter treats these behaviors as a lifespan condition rather than one restricted to middle childhood and early adolescence. Clinical Presentations Inattentiveness refers to a style of behavior, involving disorganization and lack of persistence, rather than to the psychological processes that are indexed by tests of attention. The presentation is naturally in different forms at different ages, as summarized in Table 34.1, and the impact varies with the demands for attention that the environment makes. The behaviors can be seen by direct observation (at least in childhood) if the setting is appropriate (Taylor, 1998). Motivation improves attention, as for everybody else; and some children’s activities (such as playing computer games with very frequent and insistent rewards) provide so many and so rapid incentives that they are not good ways of assessing function in the ordinary world. As people enter adult life, poor attention often becomes the most salient aspect of the condition (Kessler, Adler, Barkley et al., 2006; Millstein, Wilens, Biederman et al., 1998). Overactivity refers simply to an excess of movements; it is often the most salient problem in early childhood but the least important in adult life. Its features are statistically closely allied to impulsiveness and they are often combined into one construct of “hyperactivity.” Impulsiveness means acting without reflecting. This is often the aspect that gets young people into trouble, or irritates other people. However, in early childhood, and to some extent later, these features of impulsiveness can be difficult to distinguish from other types of oppositional behavior. Lack of clarity about social rules or angry resistance to adults can be other causes of rule-breaking, so it is important, but often difficult, to go beyond the description of unacceptable conduct to determine whether thoughtless impulsiveness underlies it (see chapter 35). Subjectively, adults often come to recognize these problems in themselves, and either describe themselves as confused or overreactive, with their thoughts in a whirl and their actions often half-considered and unwise. Children do not often do so, but some will describe the subjective difference when medication is effective, and say that they are now able to think things through more clearly without the intrusion of other thoughts. The subjective experience of children with hyperactivity is more often one of being unfairly punished or discriminated against: they experience the reactions of others to the condition rather than the condition itself. Some degrees of inattentiveness, high activity and impulsiveness are of course shown by ordinary children. Diagnostic identification needs to be based on the extent, severity and consistency of the behaviors and on their impact on social adjustment. It is quite possible for inexperienced parents or teachers to regard ordinary childish high spirits as evidence of hyperactive behavior. The tolerance of parents varies a good deal, and in community surveys it, and the degree of financial loss suffered because of the child’s problems, are strong predictors of which hyperactive children will be referred for professional attention (Sayal, Taylor, Beecham et al., 2002). Diagnostic Definitions There are two main approaches to defining disorders of inattentiveness, hyperactivity and impulsiveness: DSM-IV-TR (American Psychiatric Association, 2000), which recognizes “Attention Deficit/Hyperactivity Disorder” (ADHD), and ICD-10 (World Health Organization, 1992), which uses the category of “Hyperkinetic Disorder.” They are based on essentially the same descriptions of behavior, but weight the different items differently (Swanson, Sergeant, Taylor et al., 1998). In brief, hyperkinetic disorder requires all three components to be present, while ADHD is divided into cases where this is so (“Combined type”) and those where only inattentiveness, or only overactivity and impulsiveness, are present. 521 Disorders of Attention and Activity 34 Eric Taylor and Edmund Sonuga-Barke 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 521 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

However, hyperkinetic disorder cannot be simply identified as the combined type of ADHD; the definition is even more exacting. The diagnostic criteria must be met in more than one situation (e.g., both home and school), while ADHD requires only that there should be some impairment in more than one setting. Hyperkinetic disorder is excluded by the presence of other disorders such as autism and anxiety states, while ADHD is only excluded if its signs are better explained by a coexistent disorder. Both schemes require that the level of behaviors should be out of keeping with the person’s developmental age, and that they should be impairing to social adjustment. The practical consequence of these differences in definitions is that the ICD-10 category of hyperkinetic disorder is a subgroup of ADHD (Santosh, Taylor, Swanson et al., 2005). Evidence on which definition is more useful does not give clear answers. Researchers often do not make very clear distinctions. Indeed, research papers on ADHD very often require convergent identification by parents and schoolteachers, often focus on the combined type (or contain a predominance of combined type cases) and usually exclude cases with coexistent autism or affective disorders – although anxiety is not necessarily an exclusion. This not only achieves a refined phenotype of ADHD, but also entails that hyperkinetic disorder criteria are usually met. Much of the neurodevelopmental validation of ADHD, reviewed below, therefore leaves open the possibility that findings are confined to the hyperkinetic subgroup. When the hyperkinetic subgroup has been systematically compared with other forms of ADHD, it appears that it is particularly likely to be associated with a marked response to stimulant medication and a poor response to behavioral treatment alone (Santosh et al., 2005), and a high clustering of other neurodevelopmental anomalies such as delays in language and motor development (Taylor, Sandberg, Thorley et al., 1991). Some latent class analyses of family and twin data suggest that one of the classes that breed true is a severe and pervasive form of hyperactivity and inattentiveness (e.g., Rasmussen, Neuman, Heath et al., 2004). On the other hand, the genetic evidence of large twin studies has suggested that the degree of heritability is very similar at all levels of hyperactive behavior (Gjone, Stevenson, & Sundet, 1996), so that genetic findings would validate a dimension of hyperactivity rather than either diagnostic category. No separate etiological pathway has yet been established at any level of severity. Membership of the hyperkinetic disorder subtype does not seem to determine the course over time: persistence is not greater than in a wider ADHD phenotype (Lahey, Pelham, Chronis et al., 2006). Responsiveness to stimulant medication is not confined to a subgroup (although it differs in degree); indeed, ordinary people without ADHD show some enhancement in attention when they receive stimulants (Elliot, Sahakian, Matthews et al., 1997; Mehta, Owen, Sahakian et al., 2000; Rapoport, Buchsbaum, Weingartner et al., 1980). Clinicians may find it useful to use the concepts of both schemes, recognizing their strengths and weaknesses. A broad notion of ADHD is helpful in the screening and initial detection of cases, and marks a group at risk. However, it may encourage an inappropriately wide identification of cases, and blur some important differences of presentation within the category. The narrower concept of hyperkinetic disorder may mark a group where medication is particularly useful and neurobiological changes particularly relevant, but if it were the only category it would exclude children in need of intervention. Furthermore, the exclusion criteria in ICD-10 would, if applied too literally, rule out the diagnosis for children who deserve it in all respects except that they have other problems too. Subtypes of Disorder Apart from the distinction between “broad” ADHD and “narrow” hyperkinetic disorder, other subtypes have been suggested within the broad grouping of ADHD, even though current scientific evidence does not allow for clear conclusions about whether biologically valid subtypes are present or whether the clinical heterogeneity should be conceptualized as variation of expression within a single broader disorder. Attention deficit without hyperactivity can be identified as a separate group in community surveys (Taylor et al., 1991). It is not often seen in psychiatric clinics, but often presents as a failure of academic progress. Children are not disruptive or overactive; they may be dreamy and even somewhat inert, but CHAPTER 34 522 Table 34.1 Typical presentations at different ages. Inattentive Overactive Impulsive Adulthood Details not completed; appointments forgotten; lack of foresight Subjective sense of restlessness Motor and other accidents; premature and unwise decision-making; impatience Adolescence Persistence less than peers (<30 min); lack of focus on details of a task; poor planning ahead Fidgety Poor self-control; reckless risk-taking Primary school Brief activities (<10 min); premature changes of activity; forgetful; disorganized; distracted by environment Restless when calm expected Acting out of turn, interrupting other children and blurting out an answer; thoughtless rule-breaking; intrusions on peers; accidents Preschool Short play sequences (<3 min); leaving activities incomplete; not listening “Whirlwind” Does not listen; no sense of danger (hard to distinguish from oppositionality) 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 522

they are often muddled and disorganized in the classroom and find it hard to persist. Cognitive deficits are usually present, but they are both wider and less specific than in children who also show impulsiveness. They include working memory problems, poor spatial skills and delays of language development; motor coordination is often poor; and the IQ is often lowered (Warner-Rogers, Taylor, Taylor et al., 2000; Weiss, Worling, & Wasdell, 2003). Evidence on the scientific validity of the inattentive subtype is inconclusive so far. On the one hand, it has emerged from some latent class analyses as a distinct group (Todd, Sitdhiraksa, Reich et al., 2002); Stawicki, Nigg, & von Eye (2006) have provided a meta-analysis of six studies that included informative family history information, with the conclusion that there is indeed evidence for specific subtype transmission in families. On the other hand, Geurts, Verte, Oosterlaan et al. (2005) argued against the validity of an inattentive subtype on the basis that executive dysfunction was similarly impaired in that and the combined subtype. Perhaps one should conclude that inattentiveness is a separable component from hyperactivity-impulsivity, and that it is responsible for much of the cognitive impairment (but little of the oppositionality) of the combined subtype. The DSM-IV definition may be responsible for some confusion: the inattentive subtype (ADHD-I) requires only that the diagnostic criteria for hyperactivity-impulsivity are not met, so many apparent cases of ADHD-I may be better considered as showing mild ADHD-C. Furthermore, the behavioral descriptions of inattentiveness are not necessarily factorially pure; they include descriptions, such as failing to follow through on instructions that are very easy to confuse with non-compliance. For clinical practice we suggest that “pure” inattentiveness deserves recognition, and distinction from other subtypes. It is particularly important to detect whether the inattentive behaviors are secondary to intellectual disability or specific academic disability; and to expect the absence of hyperactive-impulsive behaviors and not just a subdiagnostic level. The risk it carries is for educational and occupational underachievement rather than for psychiatric disorders. An overactive/impulsive type without inattention has been harder to identify, and is decidedly uncommon in clinical series. In epidemiological studies it is probably less common than the other forms of ADHD (Taylor et al., 1991). It can be hard to distinguish from oppositional disorder. A recent population survey of teacher ratings of children did not identify an attentive-but-hyperactive subgroup (de Nijs, Ferdinand, & Verhulst, 2007); and indeed it is ordinarily a feature of parental rather than teacher descriptions. In our developmental perspective, it is consistent with a notion that the relevant problems in the first 3 years of life are a rather diffuse set of difficulties in emotional, cognitive and behavioral selfregulation, and that at school entry the attentional component becomes particularly significant because of the scholastic difficulties it brings (see p. 532). In this account, a subtype without inattentiveness persists in problems at home rather than at school. Situationality (i.e., children whose hyperactivity presents only at home or only at school) may also be worth distinguishing. Some evidence from twin studies suggests that this is not caused only by misidentification by one or the other party, but that to some extent there may be different genetic influences on behavior in the two settings (Nadder, Rutter, Silberg et al., 2002). Ho, Luk, Leung et al. (1996) surveyed a Chinese school population in Hong Kong with parent and teacher questionnaires, and selected those who showed hyperactive behavior at home only, at school only, or pervasively across both situations. The home-specific group showed less evidence of cognitive problems and more evidence of family conflict and adversity; perhaps they reacted with misbehavior that in turn was poorly controlled. The school-specific group showed more evidence of academic learning difficulties; perhaps some of their off-task behavior was a result of inability to cope with the lessons. In keeping with this, a cluster analytic study of subgroups in a clinically referred population in the UK found that the behavior problems in a school-situational group tended to appear later, only after school entry (Taylor, Everitt, Thorley et al., 1986). The diagnostic and assessment work should not stop at the point where ADHD is recognized, but go on to a wider range of strengths and weaknesses. Overactivity with stereotyped movements is a rather different pattern seen in clinical practice, especially in young people with severe intellectual disability. The activity can be extreme, but its repetitive quality distinguishes it from the disorganized and unpredictable activity of ADHD. ICD-10 recognizes it as a distinct category – “Overactive disorder associated with intellectual disability and stereotyped movements” – and places it as a type of pervasive developmental disorder, distinct from autism. The ICD-10 description includes the comment that stimulant medication is often unhelpful. Such a disorder has not been validated – in fact, the idea has led to virtually no research. A key question is whether it is useful to separate it from autism and other brain disorders. Several predictions could test this: the pattern of activity and attention will not be the same as that of ADHD when it coexists with autism (see p. 524); it will not be brought about only by akithisia and dyskinesias caused by neuroleptic medication; it will be a persistent trait (rather than the episodes of catatonic overactivity sometimes seen in complex brain disorders); and it will not be accompanied by the characteristic social impairments of autism. All these can be tested; in the meantime the concept is of uncertain validity. There are two useful current implications: the first is to emphasize a subgroup of overactive and handicapped children whose condition may actually be worsened by stimulants. The second is more theoretical: the idea relates to a distinction that can be made in animal experiments between hyperand hypodopaminergic states. Some experiments can cause reduced dopamine transport activity in the brains of animals such as mice, and these lead to overactivity and changes in learning (Gainetdinov, Wetsel, Jones et al., 1999). Some forms of environmental stress on animals can also lead to overactivity DISORDERS OF ATTENTION AND ACTIVITY 523 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 523

and cognitive alterations, and these are mediated by excess of dopamine (Arnsten & Goldman-Rakic, 1998). These states are probably not identical to that of the overactivity associated with hypodopaminergic states (see p. 529): they are often accompanied by stereotypic behaviors, made worse by novelty and improved by serotonin reuptake inhibitors or dopamine blockers rather than by stimulants (Gainetdinov et al., 1999). It is not impossible that such a heterogeneity might exist also in humans. Coexistent Disorders Clinical cases are often dominated by the coexistence of other problems alongside ADHD. The reasons for these associations need to be understood in the formulation of individual cases. There are three main sorts of associated psychiatric condition: neurodevelopmental disorders, disorders of childhood onset and adult type mental illnesses. Neurodevelopmental Disorders ADHD behaves in many ways like other neurodevelopmental disorders (see chapter 49). The male sex predominance, the course of persisting disability, research findings about altered brain structure and function, and associations with motor and language delays all parallel the findings in other conditions such as autism and other pervasive developmental disorders, learning disability, and Tourette disorder. Each of these conditions raises the probability of others being found in the same person. The likely reasons are that enhanced assessment leads to the discovery of other conditions, that the risk factors overlap and are of diffuse effect upon brain development and that the associated conditions all represent different aspects of neurological compromise with a range of expression. In the case of autism and allied disorders, there is a clear clinical distinction to be made, and ADHD does not by itself produce the characteristic behaviors of autism (see chapter 46). The brain changes and neuropsychological alterations of autism are so different from those of ADHD that it seems unhelpful to regard them as a single condition. The small size of the brain in hyperkinetic disorder contrasts with the increased size in some cases of autism; the family histories do not overlap much; at the neuropsychological level both show difficulties in executive function, but inhibitory dysfunction is characteristic of ADHD while the more autistic problems of central coherence and theory of mind deficits are not (Banaschewski, Hollis, Oosterlaan et al., 2005). The comorbid state tends to have the associations of both conditions. It seems likely therefore that the two disorders are independent but often associated. It is too soon to be clear about genetic similarities or differences. It is noteworthy that genome scans for autism and those for ADHD have both identified chromosomal loci that appear to be similar (Faraone, Perlis, Doyle et al., 2005). It is possible that there will prove to be both genetic influences of general effect, acting as susceptibility for a range of neurodevelopmental problems, and others of more specific influence on individual disorders. At present, however, the results of molecular mapping of the chromosomes are too unstable for firm conclusions to be drawn. Some conditions known to have diffuse brain effects – notably congenital rubella and tuberous sclerosis – also raise the probability of showing both hyperkinetic disorder and autism. It is sometimes possible for autism and hyperactivity to be associated in a different way: autism can produce a different sort of motor restlessness, to be distinguished from ADHD by its stereotyped nature and the perseveration upon idiosyncratic concerns. The distinction is made by the type of overactivity, which contrasts with the impulsive and frequently changing behaviors seen in hyperkinetic disorder. Conversely, children with ADHD may become very unpopular. Their social isolation and unreserved approaches to other children can then be mistaken for the social obliviousness of young people in the spectrum of autism. These conditions can often be distinguished on the basis of: (i) the presence of good social understanding that is shown by children with ADHD only, when they are given time to reflect about their social relationships; and (ii) direct observation of children interacting with their peers for the nature of the difficulties that they are showing. When both problems are present together, detailed assessment is often needed. Sometimes the specific features of autism can be masked by the chaotic presentation of ADHD, so persistent observation over time is needed and the diagnosis should be reviewed when overactivity and impulsiveness have been reduced (e.g., by medication). It can be important to recognize the presence of ADHD in children with autism, even though the diagnostic schemes of ICD-10 and DSM-IV regard them as exclusive categories. Stimulant medication can be valuable for the control of overactive impulsiveness even in people who have clear autistic syndromes (Aman, Smedt, Derivan et al., 2002; Research Units on Pediatric Psychopharmacology Autism Network, 2005). Intellectual disability can also both simulate and coexist with hyperactive syndromes (Willcutt, Pennington, & DeFries, 2000). For this reason, assessment of generalized and specific learning difficulties should be included in the evaluation of children presenting with hyperactivity and inattention syndromes. Attention problems can be secondary to cognitive impairment, and this may contribute to the finding of a lateonset and school-specific version in some cases (see p. 523). Problems in learning, however, can be secondary to poor attention and it is wise to re-evaluate the severity of academic difficulties after medication has been given. The widespread difficulties of children with intellectual disability (see chapter 49) usually include poor concentration, but it is only sensible to make the additional diagnosis of ADHD when the impairment of attention and activity control is out of proportion to developmental level. The way to allow for developmental delay has not been rigorously established, and it would be helpful to develop norms for different levels of disability. Until that is done, a useful clinical rule of thumb is to judge the patient’s attentiveness with reference to that which would CHAPTER 34 524 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 524

be expected in a child of chronological age equivalent to the patient’s mental age. Tourette disorder can either simulate ADHD or be an association of it. Evidence at this time is not conclusive about the reasons for the association of the two disorders. Some analyses of whether other family members are affected have indicated that the two are unlikely to be related genetically (Pauls, Hurst, Kruger et al., 1986), others that there is a genetic link (Comings, 2001). Occasionally, the presentation of overactivity proves on close analysis to be attributable to a large quantity of different tics, making it difficult to appreciate the repetitiveness involved unless and until prolonged observation is undertaken, perhaps with videotaping for detailed analysis. More commonly, ADHD and Tourette symptoms pursue different courses in the same individual, with the waxing and waning of tics being in some contrast to the persisting difficulties imposed by the ADHD. Stimulants will sometimes (but not necessarily) make the tics worse and improve the ADHD. Careful delineation of the target problems in the individual child and monitoring of treatment effects are then required. Associations with Childhood Onset Problems The most common overlap of symptomatology is between ADHD and oppositional/defiant or conduct disorders. Statistical analysis of symptoms, such as the latent dimension modeling by Ferguson and Horwood (1995), have suggested that they can be seen as independent dimensions, but that they are highly intercorrelated. A major diagnostic trap is to regard ADHD as present when the evidence is only that of oppositional misbehavior. It is also possible to make the opposite error and attribute uncontrolled and impulsive behavior to deliberate defiance. There is considerable scope for misunderstanding among parents, teachers and health professionals. In general, studies of children with both hyperactive and defiant behavior have suggested that they show the associations of both conditions. Associations with other neurodevelopmental delays are present as strongly in the combined group as in those with hyperactivity alone; indeed, family histories may be even more likely in the comorbid group (Thapar, Harrington, & McGuffin, 2001). The group with both problems is also more likely than those with ADHD alone to show adverse factors in family life, including high levels of critical expressed emotion (Taylor et al., 1991). Cross-twin cross-trait analyses have suggested that a good deal of the genetic influence on oppositional and conduct disorders is the same as that influencing hyperactivity. When both problems are present, the history usually suggests that hyperactivity came first; and follow-up of community ascertained children who showed hyperactivity but not oppositionality indicated that oppositionality could develop in people who had originally shown hyperactivity only, but that the reverse pathway was uncommon and that children with oppositional disorders did not develop hyperactivity later (Taylor, Chadwick, Heptinstall et al., 1996). The drug treatment of hyperactivity is no less effective in those who have conduct problems too than in those who do not (MTA Cooperative Group, 1999). Putting all these sources of evidence together, the suggestion is that hyperactivity represents either a risk factor for later oppositional and conduct disorders, or that it is an earlyonset form of conduct problem, with the longitudinal evidence favoring the former hypothesis. The clinical implications are important; it is worth detecting and treating hyperactivity even before conduct problems have appeared. When conduct problems do appear, the most useful diagnostic approach is not whether they or hyperactivity predominate in the picture, but whether hyperactivity and inattention are in fact present – in which case a mixed disorder is recognized. There is also an association with anxiety disorders: about 25% of children with ADHD also have an anxiety disorder (Pliszka, 2000). These cases may represent a separate condition, as implied by the ICD-10 rules in which anxiety excludes the diagnosis of hyperkinetic disorder; may represent an independent problem, as in DSM-IV’s conceptualization of multiple diagnoses; or could represent a developmental change in which some children with ADHD are at risk for the development of anxiety as a complication. Research has not yet distinguished these possibilities securely. Adult Type Mental Disorders In adolescence and adult life, ADHD starts to show an association with other diagnoses that are seldom made in childhood. Adolescent substance misuse, in particular, seems to be much more common in people with the diagnosis of ADHD (Wilens, Faraone, Biederman et al., 2003), although it is not yet clear whether it is the ADHD per se that generates the risk or the coexistent presence of antisocial activities and peer groups. ADHD is common in personality-disordered offenders (Young, Gudjonsson, Ball et al., 2003). Surveys in prison populations have suggested that many incarcerated young adults also show both previous histories and currently high levels of hyperactive behaviors (45% in a survey by Rosler, Retz, Retz-Junginger et al., 2004). It has become increasingly popular to diagnose bipolar disorder, even in prepubertal children (see chapter 38). Traditionally, the distinction has been fairly easy to make. Bipolar disorder has been associated with euphoria, grandiosity and a cycling course, with each episode lasting for at least several days. ADHD, by contrast, has been regarded as a persisting disability in which euphoria is not particularly a feature. The goal-directed overactivity of mania is usually seen as in some contrast with the disorganized and off-task activity of ADHD. However, there has been a broadening of the concept of bipolar disorder to include cases where the mood change is not euphoria but irritability, and where the cyclical nature consists of many changes within a single day. This leads to a very considerable similarity in formal definitions between this so-called ultradian version of bipolar disorder and ADHD. An unstable and overreactive mood is very common in ADHD, even though it is not part of the diagnostic definitions, and the development of an oppositional disorder, in which frequent DISORDERS OF ATTENTION AND ACTIVITY 525 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 525

tantrums are common, can be described as an “irritable” state and therefore contribute to a bipolar diagnosis. For this chapter, it is important chiefly to note that the assessment of ADHD needs to include the recognition of rapid and volatile mood changes when they are present, and that they sometimes deserve intervention in their own right and monitoring as an outcome measure. Many assessment measures, such as the Conners’ scales, do indeed include such symptoms. Possible associations with schizophrenia are raised because both groups can show erratic behavior and inattentiveness in childhood. Follow-up studies of ADHD into adult life (summarized below) have not shown an increased rate of psychosis, but the numbers involved have not yet been large enough to detect a modest increase in the rate. The clinical question sometimes arises of whether stimulant medication is unacceptably hazardous for the children of a schizophrenic parent. The strongest concern is usually to promote the best possible social adjustment for the child, so stimulants should not be ruled out lightly. Etiology and Pathophysiology A Complex and Multifaceted Condition Metaphors are often used in science to communicate complex and subtle ideas with clarity, coherence and power (Bradie, 1999). There are three metaphors commonly used in relation to ADHD: a genetic disorder (Comings, Chen, Blum et al., 2005), a frontostriatal/executive dysfunction disorder (Loge, Staton, & Beatty, 1990; Wasserstein & Lynn, 2001) and a catecholamine disorder (Levy & Swanson, 2001). In contrast to these simple metaphors, research suggests that ADHD is a heterogeneous and multifaceted condition involving interplay between diverse systems across multiple levels within the individual (Asherson, Kuntsi, & Taylor, 2005; Nigg, Willcutt, Doyle et al., 2005). In what follows, to help convey this complexity and sharpen the focus, existing empirical evidence will be set against the three simple metaphors mentioned. Is ADHD a Genetic Disorder? Heritability Genetic factors are clearly important in ADHD (Thapar, Harrington, & McGuffin, 2005a) but little is known about the mechanisms by which their influence is exerted (Asherson, Kuntsi, & Taylor, 2005). Family, adoption and twin studies suggest ADHD is familial and highly heritable (Rietveld, Hudziak, Bartels et al., 2003). Parents and siblings of cases display up to an eight-fold increased risk for ADHD (Faraone & Biederman, 2000) and biological relatives are more at risk than adoptive family members (Sprich, Biederman, Crawford et al., 2000). According to twin studies, ADHD is amongst the most heritable conditions with estimates between 60 and 90% (Thapar, Harrington, Ross et al., 2000). Specific Genes Candidate gene studies have produced a number of replicated associations (Faraone et al., 2005). The monoamines (especially dopamine, norepinephrine and serotonin) have been a major focus because of their hypothesized role in ADHD pathophysiology. In meta-analysis, significant pooled effects have been reported for three polymorphisms of dopamine genes; the D4 and D5 receptors (DRD4 and DRD5) and the dopamine transporter (DAT1; e.g., Faraone et al., 2005; Thapar, O’Donovan, & Owen, 2005a). Of these, the DRD4 and DAT1 are most likely to have functional significance. However, the DAT1 association has been challenged in recent meta-analysis (Wohl, Purper-Ouakil, Mouren et al., 2005). Given its claimed role in ADHD pathophysiology, it is surprising that there is as yet no evidence that norepinephrine gene variants are associated with ADHD (although it may be forthcoming). Based on animal knockout models, tests of potentially functional polymorphisms of the serotonin transporter and receptor genes (SLC6A4 and HTR1B) suggest an association with ADHD (Faraone et al., 2005). Genes coding for other neurotransmitter systems are actively being pursued. Interpreting Genetic Effects In contrast to the high heritability estimates, the effects of specific genes are small. When aggregated, they account for only a fraction of variance in symptom expression. How can this gap be explained? First, twin studies, although a potentially powerful tool for dissecting genetic and environmental effects, need to be interpreted with caution for a number of reasons, as they may overestimate genetic main effects (Rutter, 2002). For instance, heritability estimates subsume the effects of gene × environment interactions so that subtler environmental effects can be missed. Second, it remains possible that a large number of genes, some of at least moderate effect, exist but have yet to be identified. The results from linkage studies, if further replicated, provide support for this although genes of major effect are unlikely (Arcos-Burgos, Castellanos, Pineda et al., 2004; Bakker, van der Meulen, Buitelaar et al., 2003; Hebebrand, Dempfle, Saar et al., 2006; Smalley, Kustanovich, Minassian et al., 2002). Third, genes may interact with each other (Carrasco, Rothhammer, Moraga et al., 2006) and with environmental risk factors (see below) to increase the risk of ADHD in a non-linear manner so that genes of small main effect have disproportionate power when acting together or with environmental factors (Rutter, Moffitt, & Caspi, 2006). Fourth, ADHD may be an etiologically heterogeneous condition with different combinations of genes (and environments) producing ADHD in different groups of ADHD children (Buitelaar, 2005; Todd, 2000). To combat this, researchers are attempting to create genetically more homogenous groupings by partitioning heterogeneity using clinical phenotypes (Faraone, Chen, Warburton et al., 1995) or by identifying pathophysiological intermediates that are more likely to be linked to specific genes than is the clinical disorder: so-called endophenotypes (Doyle, Faraone, Seidman et al., 2005). CHAPTER 34 526 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 526

Candidate Environments The growing realization of the limitations of the study of genes in isolation from environments has led to renewed interest in environmental risk in ADHD. Prenatal Factors Maternal lifestyle during pregnancy (e.g., smoking and drinking) has been linked to ADHD (Linnet, Dalsgaard, Obel et al., 2003). The evidence is strongest for maternal smoking, for which a dose–response relationship with ADHD appears to exist (Thapar, Fowler, Rice et al., 2003). The findings for alcohol consumption are less clear-cut if fetal alcohol syndrome is not implicated (Linnet et al., 2003). Exposure to cocaine has a range of harmful effects in utero, of which an increased risk of ADHD might be one (Linares, Singer, Kirchner et al., 2006). Maternal stress during pregnancy and associated oversecretion of cortisol have been implicated in ADHD (Kapoor, Dunn, Kostaki et al., 2006; O’Connor, Heron, Golding et al., 2003; Rodriguez & Bohlin, 2005). Exposure to medication (e.g., benzodiazepines; anticonvulsants) may represent a risk although these effects are difficult to disentangle from the effects of the maternal mental illness (Steinhausen, Losche, Koch et al., 1994). Perinatal Factors Bhutta, Cleves, Casey et al. (2002) reported a two-fold increase in ADHD in children born with a very low birth weight; an effect possibly mediated by small and subtle lesions in frontostriatal brain circuits (Carmody, Bendersky, Dunn et al., 2006). ADHD children are more likely to have experienced pregnancy and birth complications (Ben Amor, Grizenko, Schwartz et al., 2005) but these effects are difficult to disentangle from low birth weight and the increased risk that vulnerable children may be at for a difficult birth. Postnatal Physical Factors Social and biological factors appear to have a role in the postnatal period. The role of artificial food additives remains controversial but a randomized controlled trial (McCann, Barrett, Cooper et al., 2007) showed important effects. Idiosyncratic allergies and intolerances of specific food stuffs are often identified by parents (Aardoom, Hirasing, Rona et al., 1997), and a recent meta-analysis and a large well-designed trial both suggested small but significant effects in exclusion and challenge trials (Bateman, Warner, Hutchinson et al., 2004; Schab & Trinh, 2004). Exposure to lead and related neurotoxins may be associated with a substantially increased risk of inattentive and hyperactive behavior – but these exposures are both linked to social disadvantage and cause other nonspecific neurodevelopmental difficulties (Levitt, 1999). Animal models implicate exposure to insecticides, such as DDT, although a clinical link has yet to be confirmed (Mariussen & Fonnum, 2006). Suggestions of the role of dietary deficiencies (e.g., omega-3 fatty acids, Richardson & Montgomery, 2005; iron, Konofal, Lecendreux, Arnulf et al., 2004) require further examination in large-scale trials. Postnatal Social Environment Chronic exposure to exceptional social environments early on during development can increase the risk for ADHD-like patterns. In the English and Romanian Adoptees study, for example, children who experienced extreme physical, cognitive and social deprivation in infancy were at an increased risk of pervasive and persistent overactivity and inattention (Kreppner, O’Connor, & Rutter, 2001; Stevens, SonugaBarke, Kreppner et al., in press) despite being adopted into well-resourced and committed homes before the age of 4 years. Claims that parenting is implicated in the causes of ADHD are controversial. Whereas children suffering extreme neglect and abuse may be at increased risk for ADHD (Glod & Teicher, 1996), variation in parenting style within the normal range has been assumed not to play a part (but see Morrell & Murray, 2003). Child ADHD can evoke negative and hostile responses from parents (Seipp & Johnston, 2005), while parental characteristics (including adult ADHD symptoms) can moderate these responses and exacerbate co-ercive cycles (Murray & Johnston, 2006). However, the very limited evidence from good longitudinal studies does not support the idea that this increases the likelihood of ADHD onset or persistence; rather, it predicts the onset of later comorbid conduct disorder (Taylor, 1999) and depression (Ostrander & Herman, 2006). However, the fact that parent training can significantly reduce core ADHD symptoms in preschoolers highlights the potential power of the social environment to influence the course of ADHD (Sonuga-Barke, Daley, Thompson et al., 2001). Interpreting Environmental Effects As with genetic effects, the literature suggests a role for multiple environmental influences of small effect. However, one must be cautious when interpreting these findings because specific environmental risks are embedded in a network of other factors relating to lifestyle, social class/economic adversity and maternal personality (Taylor & Warner Rogers, 2005). Furthermore, interpreting these associations is complicated by the fact that environmental risks may be markers of genetic risk (Dick, Viken, Kaprio et al., 2005). These sorts of effects can be because environments experienced by the child are correlated with genes shared with parents (passive gene– environment correlation; Kendler & Baker, 2007). Knopik, Heath, Jacob et al. (2006) found evidence in support of this by exploring levels of ADHD in the children of identical twins with or without a history of alcohol abuse: ADHD was common both in the children of twins with a history of alcohol abuse and of the monozygotic cotwins who had no such history themselves. Environmental associations could also be evoked by genetically based characteristics in the child – as when ADHD symptoms elicit maternal hostility (active gene–environment correlations). Although these gene–environment correlations are assumed to exist and account for a proportion of environmental risk in ADHD, little evidence exists for their role. Because of the limited size of effects of genes and environments when each is considered in isolation, attention has turned DISORDERS OF ATTENTION AND ACTIVITY 527 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 527

to gene–environment interactions. A gene–environment interaction occurs when the phenotypic effects of a gene vary as a function of the physical or social environment (Caspi, Sugden, Moffitt et al., 2003) and the two risks are combined in a nonlinear way to account for a disproportionate amount of variance in ADHD. Gene–environment interactions have been reported for ADHD involving both maternal smoking (Kahn, Khoury, Nichols et al., 2003) and alcohol consumption during pregnancy (Brookes, Mill, Guindalini et al., 2006) and DAT1 as well as for DRD4 and season of birth (Seeger, Schloss, Schmidt et al., 2004). These findings, although potentially important, require replication before their ultimate significance can be assessed. In summary, ADHD is not a genetic disorder in a simple sense. A reasonable working hypothesis is that genetic and environmental influences of small effect, while correlated to some extent, likely act together (both additively and multiplicatively) to create a spectrum of neurobiological risk. Is ADHD a Fronto-striatal/Executive Function Disorder? The Fronto-striatal/Executive Function Disorder Hypothesis Evidence for the role of alterations in brain structure and function in ADHD is compelling. Debate continues as to which specific brain circuits are most important. The search for the biological basis of ADHD has been motivated by the assumption that a common core of neurobiological dysfunction is responsible for the condition (Sonuga-Barke, 1998). Following the reconceptualization of hyperactivity disorders in DSM-IIIR, the role of attention was highlighted, placing neurocognitive deficits at the core of the disorder (Castellanos, Sonuga-Barke, Tannock et al., 2006). Subsequent attempts to “fine-map” deficits in terms of more refined attentional concepts from cognitive psychology have mostly been unsuccessful (Huang-Pollack, Nigg, & Carr, 2005). The fronto-striatal/executive function disorder (FS/ED) hypothesis involves a broader conception of cognitive deficits based on the observation of similarities between people with ADHD and those with disorders caused by frontal lobe lesion or disease (Denckla, 2002). The publication of Barkley’s model, in which early established inhibitory processes are a developmental precursor to the emergence of executive competence, has been extremely influential (Barkley, 1997). FS/ED focuses on higher order intentional cognitive processes including response inhibition, planning, working memory, attentional flexibility and speech fluency: constructs grouped loosely under the umbrella of executive function; a concept, although criticized for its lack of specificity, that continues to be used widely in the psychological literature. Neuroanatomically, these functions are linked to activity within the “cognitive” thalamo-cortico-striatal loop (Alexander & Crutcher, 1990). Projections from the prefrontal cortex (specifically the dorsolateral region) to the neostriatum (specifically the caudate nucleus) pass via a complex set of direct and indirect basal ganglia pathways through the thalamus and back to the prefrontal cortex. Although anatomically and functionally segregated, this network has strong connections to other more posterior regions including the frontal motor cortices, the parietal cortex and the cerebellum (Timmann, Richter, Schoch et al., 2006). Activity within this circuit is mediated by GABA and glutamate and modulated by the catecholamines – dopamine and norepinephrine. Evidence Supporting the FS/ED Hypothesis Neuropsychology Recent quantitative reviews support the association between ADHD and executive dysfunction across a wide range of domains and measures within domains (Huang-Pollock & Nigg, 2003; Lijffijt, Kenemans, Verbated et al., 2005; Oosterlaan, Logan, & Sergeant, 1998; Willcutt, Doyle, Nigg et al., 2005). A comprehensive review is outside the scope of this chapter but a brief survey provides robust and convincing evidence that children with ADHD perform worse than controls in domains such as response inhibition and interference control, planning and working memory. Pooled effect sizes from a meta-analysis of nearly 7000 children are only in the moderate range (0.4–0.6; Willcutt et al., 2005). Furthermore, in a very large study using an extensive battery of tasks only about half of the children with ADHD displayed a deficit on any one executive task and very few subjects showed a pervasive pattern of EF deficits (Nigg et al., 2005). This is in keeping with the idea that neuropsychological tests are of limited value diagnostically, in and of themselves. Structural Neuroanatomy Total brain volumes of children with ADHD are reduced by up to 5% with effects on both gray and white matter and larger reductions apparent in the right hemisphere (Seidman, Valera, & Makris, 2005). Reductions in intracranial volume have been reported (Durston, Pol, Schnack et al., 2004). Unsurprisingly, given the dominance of the FS/ED hypothesis, work has concentrated on two regions in particular – the prefrontal cortex and the striatum, especially the caudate nucleus. Region of interest (ROI) analyses provide good evidence of alterations within the dorsolateral prefrontal cortex and the neostriatum (caudate/putamen; Castellanos, Lee, Sharp et al., 2002). Cortical thinning may be especially marked in prefrontal regions implicated in executive control (Shaw, Lerch, Greenstein et al., 2006). While these effects persist after controlling for medication status and comorbidity, most are lost if total brain volume is taken into account (Castellanos et al., 2002). Functional Neuroanatomy Functional magnetic resonance imaging (fMRI) case–control studies report reduced activation within both the ventrolateral and dorso-lateral prefrontal cortex (Durston, Tottenham, Thomas et al., 2003; Rubia, Overmeyer, Taylor et al., 1999, 2005) as well as the neostriatum (i.e., caudate and putamen; Rubia et al., 1999; Vaidya, Bunge, Dudukovic et al., 2005), with the most consistent findings relating to the caudate nucleus. Positron emission tomography (PET) and single photon emission computed tomography (SPECT) report reduced CHAPTER 34 528 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 528

glucose metabolism in frontal regions (Ernst, Kimes, London et al., 2003; Schweitzer, Lee, Hanford et al., 2003). Studies using event-related potentials (ERPs) and other electrophysiological paradigms provide further evidence for the FS/ED hypothesis (Fallgatter, Ehlis, Rosler et al., 2005). Beyond Fronto-striatal/Executive Dysfunction Despite this focus on the FS/ED circuit there is strong evidence for the involvement of other brain circuits and related psychological functions. At the neuropsychological level, a very broad range of extra-executive domains has been implicated, including timing and temporal synchrony (likely implicating thalamo-cerebellar circuits; Toplak, Dockstader, & Tannock, 2006); reward and motivation (likely implicating orbito-frontalventral-striatal circuitry; Sagvolden, Johansen, Aase et al., 2005; Sonuga-Barke, 2005); attentional orienting and alerting (likely implicating posterior parietal networks; Banaschewski, Brandeis, Heinrich et al., 2004) and more broadly based difficulties in the regulation of arousal and alertness (Sergeant, 2005) and heightened stimulation seeking (Antrop, Roeyers, Van Oost et al., 2004). In these studies, effect sizes are in the range reported for executive deficits; again suggesting that only a subgroup of ADHD children are affected by each pattern of difficulty. Structural alterations are also widespread affecting temporal, occipital and parietal lobes, the corpus callosum and cingulum (for a review see Seidman, Valera, & Makris, 2005). Effects in relation to the cerebellum are perhaps most striking (Castellanos et al., 2002). There is emerging evidence of alterations in key foci such as the amygdala (Plessen, Bansal, Zhu et al., 2006). In terms of functional imaging studies, two types of evidence for extra-executive circuitry involvement come from imaging studies. First, there are those studies that have specifically probed executive circuits but found evidence for the role of other brain regions. For instance, response conflict studies using Stroop-like tasks have reported reduced activation in widely distributed networks with loci not normally conceptualized within the executive loops (i.e., anterior cingulate cortex; Bush, Frazier, Rauch et al., 1999; Rubia et al., 1999; Tamm, Menon, Ringel et al., 2004), the parietal and temporal lobes and cerebellum (Tian, Jiang, Wang et al., 2006; Vaidya et al., 2005). There are also those studies that have purposefully probed other regions and processes in an attempt to explore the neurobiological basis of the diverse neuropsychological processes implicated in ADHD. Although currently less common these studies have started to delineate the functional neuroanatomy of alerting and reorienting and reward anticipation (Scheres, Dijkstra, Ainslie et al., 2006). Interpreting the Neuroscience Evidence Although, at the group level, FS/ED is associated with ADHD, a closer examination of the evidence does not support a strong version of the FS/ED hypothesis – that FS/ED is the common core dysfunction of ADHD. In fact, FS/ED may be sufficient for ADHD but it is not necessary. It seems increasingly clear that: (i) at the group level, ADHD is associated with a diverse range of non-executive deficits; and (ii) at an individual level, many children with ADHD appear not be affected by executive dysfunction to any significant degree. Recent models have emphasized this psychopathophysiological heterogeneity (Sonuga-Barke, 2005) and developed the idea that ADHD is an umbrella construct which, while clinically useful, subsumes multiple groups of patients with distinctive etiological and pathophysiological profiles. Studies with measures from multiple domains and large samples sufficient to test this multiple pathway hypothesis are currently rare and limited to the neuropsychological domain. Solanto, Abikoff, Sonuga-Barke et al. (2001) found that executive dysfunction (measured using the stop signal paradigm – a measure of the ability to inhibit an already initiated response when requested) and delay aversion (measured using the choice delay task – a preference between a small immediate and a large delayed reward) were both deficient in ADHD, despite being uncorrelated with each other – suggesting two dissociable bases for the disorder. Similar results were found in samples of preschoolers (Dalen, SonugaBarke, Hall et al., 2004) and children with hydrocephalus and spina bifida (Stevenson & Cate, 2004). Research extending this account to other areas of deficit and levels of analysis is currently under way. In summary, ADHD is not an FS/ED disorder in any simple sense. A reasonable working hypothesis is that ADHD is an umbrella construct that subsumes multiple subgroups of patients each with their own distinctive psychopathophysiological signature, of which fronto-striatal/executive dysfunction is just one. Is ADHD a Catecholamine Disorder? Four observations provide indirect evidence for the role of catecholamine dysregulation in ADHD. First, ADHD symptoms are reduced by dopamine (DA) and norepinephrine (NE) agonists such as methylphenidate, amphetamine and atomoxetine, which act via different mechanisms to increase extracellular DA and NE but have similar clinical effects (Pliszka, 2005). Second, as reported above, there are a number of associated polymorphisms in genes affecting catecholamines, especially DA (Faraone et al., 2005). Third, within animal models pharmacological lesions and gene knockout of catecholamine systems produce behaviors that mimic ADHD (Arnsten & Li, 2005; Madras, Miller, & Fischman, 2005). Fourth, NE and DA, although widely distributed within the brain, have core branches that heavily innervate regions implicated in the neuropsychological underpinnings of ADHD. There are two main dopamine branches: the meso-cortico-limbic branch with cells projecting from the midbrain ventral tegmental area to the limbic regions including the amygdala, the ventral striatum and the frontal cortex and the nigro-striatal branch projecting from the substantia nigra to the striatum. The norepinephrine system has major projections from the locus ceruleus throughout the cortex (anterior and posterior) and into the cerebellum. More direct evidence for the role of catecholamines in ADHD comes from several sources, with the literature being DISORDERS OF ATTENTION AND ACTIVITY 529 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 529

largely limited to DA. SPECT and PET studies have found increased dopamine binding in the striatum in ADHD (reviewed by Spencer, Biederman, Madras et al., 2005), a finding that fits well with the clinical action of methylphenidate (Volkow, Wang, Fowler et al., 2005). Methylphenidate (MPH) has remedial effects on neuropsychological deficits in the domains of inhibition (Boonstra, Kooij, Oosterlaan et al., 2005; Klein, Fischer, Fischer, et al., 2002; Turner, Blackwell, Dowson et al., 2005), sustained attention (Boonstra et al., 2005), working memory (Mehta, Goodyer, & Sahakian, 2004; Turner et al., 2005), set shifting and planning (Kempton, Vance, Maruff et al., 1999). MPH appears to have beneficial effects on other areas of functioning not traditionally linked to the fronto-striatal cognitive loop, such as visual memory (Rhodes, Coghill, & Matthews, 2004), timing (Baldwin, Chelonis, Flake et al., 2004) and the motivational salience of a task (Volkow, Wang, Fowler et al., 2004), but whether these effects are related to the treatment of ADHD is not known. Interpreting Neuropsychopharmacology of ADHD Although the evidence implicating the catecholamines is persuasive, much of it is circumstantial and indirect in nature and therefore difficult to interpret. Even if one can demonstrate that dopamine agonists reduce symptoms and improve functioning, and that this varies as a function of genotype, it does not necessarily implicate DA in the pathophysiology of the disorder. There are a number of reasons for caution. Case–control studies suggest that the effects of MPH are similar in nature for both clinical cases and controls. In keeping with this, recent reports have suggested that MPH has a broad-based generic effect on arousal and the motivational salience of tasks rather than specific effects on the neural circuits shown to be affected in ADHD (Volkow et al., 2005). Interpreting these effects vis-à-vis the role of DA in ADHD is further complicated by observation that MPH can have effects on both the phasic and tonic aspect of the DA response. Volkow and Swanson (2003) have argued that the therapeutic effects of DA occur following slow and stable increases in DA (i.e., increased DA tone), while its abuse potential is related to short and rapid changes that mimic phasic firing. The significance of these effects for understanding the specificity of the “dopamine deficit” (in phase or tone) in ADHD is as yet unclear. The most direct evidence for DA deficits comes from those PET imaging studies showing increased dopamine transporter (DAT) density in ADHD (although there have been a number of non-replications of this effect). However, the adaptive quality of neural systems means that DAT up-regulation is likely to be a consequence of a complex set of neuroanatomic alterations (Russell, 2002). While lower densities could represent a relatively permanent trait closely linked to the fundamental neurobiological causes of ADHD, they could equally be a consequence of the condition or a marker of some more fundamental neurobiological process (Madras, Miller, & Fischman, 2002). Animal models suggest that DA and NE systems interact (Liprando, Miner, Blakely et al., 2004) with each other and with other neurotransmitters such as serotonin and acetylcholine (Olijslagers, Werkman, McCreary et al., 2006), and future models of both the pathophysiology of the disorder and its treatment need to take account of this. In summary, a sensible working hypothesis is that catecholamine function appears to be implicated in ADHD but the issues of cause and effect are difficult to disentangle and the particular mechanisms are likely to be complex and involve interactions between NE and DA as well as other neurotransmitters. An Integrative Framework for ADHD Etiology and Pathophysiology Figure 34.1 illustrates a framework that integrates the working hypotheses set out above with the aim of communicating the key themes set out in this section. Multiple early genetic and environmental influences of small effect act together to create a spectrum of neurobiological risk by altering brain structure and function and associated cognitive processes that mediate the emergence of ADHD. The postnatal environment also has an important role within the model, both as secondary direct influences on brain processes (e.g., diet, environmental toxins) and as mediators/moderators of outcome through reciprocal coercive cycles of interaction (e.g., negative parenting). The framework also makes explicit the heterogeneity in ADHD by including multiple pathways to ADHD, each potentially associated with a different set of primary influences, and mediating and moderating processes. In this particular model, three different pathways are hypothesized but this is for illustrative purposes only. Exploring these different pathways by examining the way that neuroanatomic and neurofunctional and psychological processes mediate the effects of genes and environments on ADHD represents a major research priority (Castellanos & Tannock, 2002). From a clinical point of view, this sort of model highlights the need for broad-based assessments of multiple impairments across diverse regions of functioning as well as tailoring of treatment to a child’s particular areas of difficulty rather than generic or formulaic approaches. The assumption behind most of the research on pathophysiology has been that the basis for ADHD is similar during all developmental periods. This means that there are few comparative data across different stages. Studying developmental changes in the pathophysiology of ADHD is an important priority for future studies. Epidemiology Several studies converge on a point prevalence for hyperkinetic disorder of about 1.5% in the primary school age population, and about 5% for ADHD (Swanson et al., 1998). CHAPTER 34 530 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 530

A recent National Morbidity Survey in the UK was based on a nationally representative sample of more than 10,000 children studied with rating scales and structured interviews given by non-clinical researchers, after which clinicians made diagnoses on the basis of the information gathered (Meltzer & Gatward, 2000). The rate for hyperkinetic disorder was about 14 per 1000 children, with the rate substantially lower for girls than for boys (the usual ratio in the population being around 1 : 3; Heptinstall & Taylor, 2002). The use of health services was quite high in the hyperkinetic group, with nearly half of the children receiving some sort of intervention – but this did not necessarily imply that their hyperactivity had been identified as a problem. Indeed, an epidemiological study in a London borough found that only about 1 child in 10, out of those identified by high scores on rating scales from teacher and parent, were in practice receiving a diagnosis of ADHD (Sayal et al., 2002). National UK figures suggest that stimulant medication is given for only about 3 children per 1000 (NICE, 2005), and most other European nations are lower still. By contrast, surveys in the USA indicate about 3% of all school-age children being diagnosed and treated (Olfson, Gameroff, Marcus et al., 2003; Safer & Zito, 2000) – although with considerable variation in different parts of the nation. A child whose behavior is hyperactive has a complex journey to becoming a diagnosed case. The knowledge, tolerance and attitudes of parents, teachers and health practitioners will all affect the apparent prevalence. The great international differences in the prevalence of diagnosed conditions appear to reflect the criteria used more than the behavior of children (Swanson et al., 1998). ADHD point prevalence estimates internationally cluster around 5–10%; hyperkinetic disorder around 1–2%; screening questionnaire ratings of those at risk around 10–20%. Attention deficit without hyperactivity has received less research attention, but is troublesome for something like another 1% of the school-age population. In countries where there is a large difference between population rates and the numbers diagnosed in practice, there can be considerable fluctuations over time in the apparent prevalence. The numbers treated in the UK appear to have risen some five-fold in a 10-year period (NICE, 2005), but the point prevalence in the UK’s National Morbidity Survey was very similar to that of estimates made more than 10 years previously (Meltzer & Gatward, 2000; Taylor et al., 1991). DISORDERS OF ATTENTION AND ACTIVITY 531 Fig. 34.1 A simplified generic framework of the pathophysiology of ADHD designed to communicate the key themes in the pathophysiology and etiology section: multiple pathways between originating genetic–environmental influences are mediated by alternations in the neurocognitive processes. Genes and environments are correlated. Tertiary social environmental factors influence outcome through reciprocal relationships in which a child’s difficult behavior evokes negative parental behavior that in turn exacerbates/escalates behavior problems. ODD/CD: oppositional defiant disorder/conduct disorder. ADHD ODD/CD SPECIFIC RISK GENES S P E C I F I C E N V I R O N M E N T Mediating process A e.g., frontostriatal executive deficits Ga Gb Mediating process B e.g., thalamocerebellar timing deficits Gc Gd Mediating process C e.g., orbitofrontal – accumbal reward deficits Ge Gf Secondary influence e.g., food additives Tertiary mediating/ moderating influences e.g.,harsh/ negative parenting Originating influence e.g., maternal smoking in pregnancy 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 531

Hyperactive behavior seems to have been relatively stable over decades at a time when other types of mental health problem in young people have been rising (Collishaw, Maughan, Goodman et al., 2004). One implication is that changes in society – such as the rise of television viewing and eating processed food – are unlikely to be critical factors, but that recognition of problems can change dramatically in a short time. Longitudinal course The course from early childhood into the school years is variable. From infancy to the age of about 3 years there is a great deal of variation, and indeed the early stage may be a rather wide set of temperamental problems in self-regulation, but by the age of 4 years a diagnosis of ADHD is very likely to persist into school age (Lahey, Pelham, Loney et al., 2004). A population study comparing monozygotic with dizygotic twins has concluded that there are genetic influences on the course of hyperactive behavior over the early years, not only on the initial appearance of the problem (Asherson, 2005). The transitions into nursery and school life bring different kinds of challenge to children with less well-developed control of impulse and attention than their peers. From childhood into adolescence, there is a risk for the core behaviors to continue and about half of previously diagnosed cases will still meet diagnostic criteria (Klein & Mannuzza, 1991). Indeed, unreferred cases in the community, and those with high levels of behavior problems that fall short of the diagnosis, continue to show impaired social development: impulsiveness declines in absolute terms, but remains deviant relative to age-matched peers (Taylor et al., 1996). Lack of friends, work and constructive leisure activities are prominent in adolescence, motor accidents become a considerable risk, and there is academic underachievement. A major possible outcome for those who show impulsiveness and overactivity (as opposed to inattentiveness alone) is the development of aggressive and antisocial behavior and delinquency (Farrington, 1995). Substance misuse deserves particular mention because of its importance in young people’s development (see chapter 36). A review and meta-analysis by Wilens et al. (2003) has indicated both that ADHD is associated with (and precedes) substance misuse, and that the association is not caused by prescribed medication, for those taking stimulants show lower rates of substance misuse. There is some evidence from longitudinal research (Taylor et al., 1996) that the pathway from ADHD into misuse is dependent upon the appearance of conduct disorder. Several prospective studies have followed patients through adolescence into adulthood (Barkley, Fischer, Edelbrock et al., 1990; Biederman, Faraone, Milberger et al., 1996a,b; Faraone, Biederman, Mennin et al., 1996; Faraone, Biederman, & Mick, 2006; Hechtman & Weiss, 1983; Mannuzza, Klein, Bessler et al., 1998; Mick, Faraone, & Biederman, 2004; Weiss & Hechtman, 1993). These studies taken together suggest that a majority of diagnosed young people no longer meet criteria for ADHD in adult life, but that nevertheless many will still show above-average levels of inattentiveness and impulsivity (estimated variously at 10–40%: Barkley, 2002; Biederman, Mick, & Faraone, 2000; Faraone et al., 1996; Faraone, Biederman, & Mick, 2006; Hill & Schoener, 1996; Spencer, Biederman, Wilens et al., 1996). There is something of a puzzle in that ADHD diagnosed using strict DSM-IV criteria ought to be substantially less common in adults according to the longitudinal studies, yet cross-sectional surveys in adult life come up with surprisingly high prevalence rates of about 4% (Kessler et al., 2006). Adult surveys also indicate a very high degree of comorbidity, so it may be that ADHD criteria can be met because of the presence of adult mental disorders or that persistence of ADHD is a strong cause of other adult disorders. The functional importance in adults is variable. Antisocial behavior tends to persist (Hechtman & Weiss, 1986), and sometimes the overall impact may worsen because of the increased demands of an adult environment and manifest as: educational, organizational or occupational failures; substance use disorders and other dependent, risky, antisocial or illegal behaviors; or emotional and relationship difficulties (Millstein et al., 1998). Nevertheless, for some, adult life can also bring opportunities for better social adjustment. People can choose occupational niches, such as sales and trading, in which good skills in immediate problem-solving are more important than longer drawn out planning and foresight. It is also quite possible for ADHD to present for the first time in adult life. There will then be a story of symptoms having been present in childhood but having been unrecognized, or misattributed or not impairing. Protective factors, such as high intelligence or capable upbringing, may have meant that there was in effect no problem. Some of these protections may have been left behind, or more difficult challenges may have appeared. Sometimes, life changes, such as embarking on higher education or promotion to increasingly responsible positions, may be the first occasions for ADHD to cause failure and presentation to a health service. The influences determining persistence or remission of ADHD into adolescence and adult life should be very important: they ought to be key targets for intervention. More research is needed to determine this. Environmental childhood factors did not turn out to influence the persistence of inattention and impulsiveness into early adult life in a prospective longitudinal study of untreated and non-comorbid hyperactivity (Taylor et al., 1996). However, factors such as hostile attitudes from parents and non-acceptance by peers did predict whether aggressive and other antisocial complications would develop (Rutter, Maughan, Meyer et al., 1997); and a val-val genotype in a COMT gene polymorphism together with a low birth weight predicted the development of antisocial symptoms in those with ADHD (Caspi, Langley, Milne et al., in press; Thapar, Langley, Fowler et al., 2005b). Polymorphisms in the dopamine genes (DAT1 and DRD4) have predicted persistence to poor social outcome later (Mill, Caspi, Williams et al., 2006). Persistent cases of ADHD tend CHAPTER 34 532 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 532

to have stronger histories of ADHD in other family members (Faraone, 2004), suggesting that genetic factors influence course at this stage of development too; that family relationships help to determine the course; or that one family member’s behavior makes others act in the same way. The implications for practice are that from childhood to early adult life, and perhaps longer, severe levels of hyperactivity and inattentiveness should be seen as potentially chronic disability, and that intervention should target not only the core symptoms but also the surrounding tangle of adverse personal relationships and educational failure. Clinical Assessment At all ages there is a need for information from multiple sources. Clinical recognition needs to be based upon experience of what is expected of children at different ages and at different developmental levels. In preschool, observational approaches are often required. There is a wide range of variation of parental tolerance, and considerable overlap with other aspects of a “difficult” temperament. It may be possible to witness directly the overactivity, the disinclination to wait and the choice of immediate rather than delayed gratification – for example, by setting up a waiting situation in which the children will have a larger reward if they refrain from grabbing an immediate one. Parental interview accounts are especially useful if they are based on observable behaviors rather than global descriptions such as “irritable.” By school age, a wide variety of parent and teacher rating scales are available and have been reviewed (Stein & Perrin, 2003; Taylor, Dopfner, Sergeant et al., 2004) with conclusions that instruments developed for the specific purpose of assessing ADHD are usually more accurate than general purpose psychopathological instruments (Miller, Lee, & Raina, 1998). The sensitivity and specificity of such instruments often appear to be very good, yet even then the classification obtained can be inadequate. Measures such as Conners’ rating scales show an effect size for children with ADHD, compared to normal controls, of around 3 standard deviations (SD), and this level of discrimination should correspond roughly to 80% levels of sensitivity and specificity, or even better. While this sounds very impressive, the difference in base rates implies that non-hyperactive children will still be wrongly identified as ADHD so often that they may outnumber the true cases. (In the above example, and assuming a 5% prevalence, the 20% wrongly identified come from about 95% of the children, resulting in 18% false positives; while correctly detected true cases will be about 4% of the population.) Causes of false positives include raters without sufficient appreciation of the developmental norms for that age, raters who bring qualities of their relationship with the child to bear on making their rating of behavior, and contrast effects in which children are implicitly rated against other members of the family or other members of the subculture. Detailed clinical interview with the parent (or other caregiver) is usually the most valuable single measure. In this context it is possible to go beyond the request for a rating of whether a child’s impulsiveness is abnormal, to a description of the behavior on which that rating was based. The interviewer can then apply a clinically informed judgment as to whether that level of behavior is in fact abnormal for the child. Every effort should be made to obtain and discuss ratings by schoolteachers. Observations of the child’s behavior are also valuable, especially when there is diagnostic doubt. By the time of school entry, however, much of the overt behavior will be modified – at least in the artificial circumstances of clinic assessment. The novelty of the situation, the focused adult attention and the structured nature of the situation all militate against hyperactivity being readily observable. The diagnosis should therefore not be dismissed for the sole reason that the child appears well controlled during assessment. Nevertheless, when abnormality is seen, then direct observation is invaluable for detecting its pattern, its antecedents and its consequences. For adults who seek services for the first time, their own account of themselves is often the main presentation. However, self-report is of limited value by itself. There was less continuity between childhood hyperactivity at age 7 and selfreports at age 17 than there was for ratings made by people who knew the young person well (Danckaerts, Heptinstall, Chadwick et al., 2000). Genetic influences are less strong for self-report than for ratings by others. Whenever possible, diagnostic assessments should include the accounts of parents, partners or other good informants, and the differential needs to include hypomania and personality disorder. Various rating scales have been developed for adults. The Wender Utah Rating Scale focuses on retrospective symptoms in childhood plus current hyperactivity, inattention and other symptoms: the recall of childhood has been validated against parent report and found to be reasonably reliable (Ward, Wender, & Reimherr, 1993). The Adult Self Report Scale (Adler, Kessler, & Spencer, 2004; Kessler, Adler, Ames et al., 2005), Conners’ Adult ADHD Rating Scale (Conners, Erhardt, Sparrow et al., 1998) and Brown Adult Attention Deficit Disorder Scale (Brown, 1996) are also available. Assessment should not stop at the recognition (or exclusion) of a syndrome of hyperactivity and inattentiveness, but go on to consider the subtypes, any coexistent disorder and the likely causal pathways as sketched in this chapter. The strengths and weaknesses of the family and school are important for their ability to cope and for what kinds of intervention will be most appropriate. Physical examination should be close enough to uncover any evidence of neurological disease and assess coordination; to exclude hearing impairment; and to note any evidence of underlying chromosomal disorder or thyroid disease. Physical investigations are not routinely needed, but should be guided by history and examination. Psychological testing does not normally give the diagnosis (which is behavioral) but is valuable for several other purposes: analyzing reasons for poor DISORDERS OF ATTENTION AND ACTIVITY 533 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 533

learning, providing suggestions for classroom education, detecting coexistent cognitive impairments, and establishing an approximate estimation of mental age, against which the specificity of attention impairment should be measured. The research tests reviewed earlier in the chapter have not in general been developed to the point that their test–retest reliability is known and they have not been standardized to the point where normal values are known, so they are not yet recommended for clinical practice. There are several commercial versions of Continuous Performance Tests (which are not necessary for following the response to medication but can be useful in cases where the response is unclear), and a convenient set of tests of sustaining, focusing and dividing attention and inhibition is available as the TEACH (Test of Everyday Attention for Children; Manly, Anderson, Nimmo-Smith et al., 2001). Treatment Intervention begins with an explanation of the disorder and its nature, directed to the child, family and teachers. Sometimes this is enough in itself. The alleviation of adult guilt and irritation with the child may benefit the child considerably. Advice and assessment should try to ensure that the parenting context includes positive contacts between parent(s) and child together with clear expectations for appropriate, and sanctions for inappropriate, behavior. Simple advice to schools on managing hyperactivity was helpful in reducing hyperactivity ratings of the children in a large-scale randomized non-blind trial (Tymms & Merrell, 2005). Trial evidence has appeared for some more specific interventions – especially medication, behavior therapy and dietary treatments. Stimulant medication – usually methylphenidate or dexamfetamine – is widely given and licensed for children in many countries. Atomoxetine has a license in the USA for children and adults and is licensed in Europe for children and for adults if their treatment has started in childhood. These three medicines have received extensive trials and systematic reviews (that by NICE, 2005, is particularly comprehensive). All three are efficacious in comparisons with placebo: effect sizes of MPH on hyperactivity symptoms in randomized controlled trials are between 0.8 and 1.1 SD; and those of atomoxetine around 0.6 SD (Banaschewski, Coghill, Santosh et al., 2006). Behavior therapy has received several trials, but no very satisfactory systematic review. Miller, Lee, & Raina (1998) excluded most trials on methodological grounds, and from the two trials remaining thought there was no evidence of superiority to standard clinical care. One large-scale random allocation non-blind trial in the USA focused on the comparison between careful medication management, intensive behaviorally oriented psychosocial therapy, a combination of the two, or a simple referral back to community agencies (which usually resulted in medication) (MTA Cooperative Group, 1999). The main conclusions after 14 months’ treatment were that careful medication was more powerful than behavior treatment, and considerably more effective than routine medication in the community. There were many advantages in adding medication to behavior therapy, but relatively few to adding behavior therapy to medication. The superiority of careful medication to behavior therapy was all the more striking in that the behavior therapy provision was much more intensive and prolonged than could be achieved by a community service. The combination of behavior therapy and medication did have some benefits: better control of aggressive behavior at home; improving the overall sense of satisfaction of parents; possibly reducing the medication dosage; and increasing the rate of achieving “normalization” (the reduction of problems to a level where none was rated as more than minor). These improvements were real but modest, and would probably not justify the very high costs of the full treatment package in this research-based form. Follow-up 2 years after the end of the trial suggested that the differences between therapies had lessened or disappeared. It does not follow from the power of medication that it is always the first choice treatment. Behavioral therapy may be less effective, but it is still helpful for many children. The costs of a short course of parent training are comparable to those of medication; the outcome may be somewhat less favorable in terms of symptom reduction, but it has the advantage of carrying very little physical hazard. A re-analysis of the MTA study has found that the superiority of medication to behavior therapy is greater in hyperkinetic disorder than in other types of ADHD (Santosh et al., 2005). The trial suggests that most children whose problems are severe enough to get a diagnosis of hyperkinetic disorder will need medication. Family attitudes should of course be respected, and often a trial of psychological treatment will be attempted, but medication should be advised if there has been no substantial improvement after a few weeks. For children at lesser degrees of severity – those who show ADHD but not hyperkinetic disorder – the choice of initial therapy is more evenly balanced. In these milder cases there are options about which treatment to start with. Decisions will depend on the analysis of the individual child, the strengths and weaknesses of their school and classroom environment, the severity of disturbance of peer relationships, and the preferences of the families. It is quite reasonable to start with either therapy, in the knowledge that one will proceed to the other should the response be suboptimal. The details of treatments have been spelled out in guidelines (e.g., Taylor et al., 2004) and textbooks (e.g., Barkley, 2000). The principles of behavioral intervention do not differ greatly from those used in therapy of other behavioral problems in childhood. Specifically and operationally described problems should be identified, the contingencies that affect them established, and a monitored approach taken to enhancement of adult attention to the child and effective instruction (see chapters 62 & 64). Particular attention should be paid to speed in the delivery of rewards or response cost; explaining to the child which of their behaviors has earned the reward, or loss of reward; varying rewards frequently; and ensuring that there is variety and novelty in the management system. These aspects CHAPTER 34 534 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 534

of therapy have particular relevance to overcoming the attention problems that often compromise the response to behavior therapy. Novel non-pharmacological approaches that target core ADHD deficits (e.g., working memory training; Klingberg, Fernell, Olesen et al., 2005) have been developed but lack sufficient empirical support to recommend them at present. Medication usually starts with immediate-release MPH given three times a day in doses starting with 5–5–2.5 mg or 10–10–5 mg (depending on the size of the child), and should be monitored by parents and teachers (and if possible by the child) using a simple scale such as the abbreviated Conners. The initial monitoring scale focuses on the key target of hyperactivity and a checklist of possible adverse effects; it can be helpful to add to the scale other items that are of particular relevance to the individual child. In the first stage of titrating dosage, monitoring should be frequent – ideally daily but, more realistically, weekly. The dose is then titrated upwards – often weekly, but a daily variation in dosage can also be reliable – until there is a good response, adverse effects become troublesome or the ceiling of 0.7 mg/kg/dose is reached – whichever comes first. Monitoring should include growth in height and weight plotted on developmental charts, pulse and blood pressure, and observation of mental state in case adverse effects such as depression, lack of spontaneity, or perseveration should appear. Blood tests are not routinely required (but the manufacturer recommends them, for unknown reasons). Treatment with a long-acting medicine is helpful for some children, and can be considered from the start. The advantages over repeated doses of immediate-release medication are for the child, whose treatment can be more private if not delivered in school; and for the school, which does not have to store and administer controlled drugs. Preparations of MPH vary in the physics of their delivery system and the proportion of immediate-release to extended-release that is present. Concerta XL has an action lasting about 12 hours, Equasym XL and Ritalin LA about 8 hours, and a skin patch is also available in the USA. Surveillance of millions of children treated has led to a few reports of sudden death, epileptic seizures, liver failure and electrocardiogram (ECG) abnormality – especially, prolongation of Q-Tc interval. They are too rare to know whether they are in fact associated with the medications or represent coincident disease, or whether they are more common in one drug than another. We suggest that a preceding heart problem – structural, or suggested by a history of breathlessness or exercise syncope or a history of sudden death in youthful family members – should be a signal for a cardiological examination before therapy, including ECG. Stimulants are not contraindicated in coexistent disorders, but caution is needed in the presence of autism or Tourette disorder, both of which can be worsened by stimulants and need careful monitoring. There is some contradiction about the effect of stimulant drugs on those who show high anxiety as well as ADHD. Placebo-controlled trials have indicated that stimulants are of less effect on hyperactivity in children where there is anxiety too (Buitelaar, Van der Gaag, SwaabBarneveld et al., 1995; Taylor, Schachar, Thorley et al., 1987). By contrast, the MTA study found that the general superiority of medication to behavior therapy was not affected by the coexistent presence of high anxiety (MTA Cooperative Group, 1999). Inspection of the MTA data suggests that medication was substantially less effective in the group that received stimulants as part of community treatment; the benefits of stimulants were essentially in the group treated with the careful monitoring of the research group. It may be that particularly close attention to monitoring and dosage is required for successful treatment of comorbid states. Atomoxetine has been introduced more recently; it is an inhibitor of the norepinephrine transporter, and raises synaptic levels of both norepinephrine and (at least in frontal cortex) dopamine. The action will usually last throughout the day if it is given in the morning. Onset of clinical effectiveness is slower than for stimulants; some action is often seen after 2 weeks of administration, but may still be increasing at the 6-week point. There have been case reports of suicidal ideation, liver failure and epileptic seizures. These adverse effects are so rare that it is hard to know whether they are more common in those who take the drug than those who do not, but they deserve vigilance in monitoring and parents should therefore be informed of what to watch for. The choice between atomoxetine and an extended-release stimulant will be made on the basis of effect size and speed of action (favoring MPH or dexamfetamine), freedom from risk of abuse (favoring atomoxetine), balance of adverse effects (insomnia, growth retardation and tics being more common with stimulants, nausea and sedation with atomoxetine), user preferences, and cost. If stimulants are ineffective, atomoxetine may nevertheless be helpful. Medication is usually effective. If it is not, then the reasons should be sought. Is it being swallowed? If not, careful and sympathetic exploration of the reasons for refusal may help. Has the dose been titrated carefully to the child? The range of effective doses is great, and attention both to this and the timing of doses can correct non-response. Have adverse effects appeared? If so, they can often be managed symptomatically – e.g., with dose adjustment and sleep hygiene measures for insomnia, or rescheduled meals for loss of appetite. If one of the licensed medications has failed, has another one been tried? Has the diagnosis been reviewed (refractoriness to therapy may be associated with an underlying disorder such as autism)? Only after such a process should the disorder be seen as refractory and an unlicensed therapy attempted. Second-line drugs include some with reasonable controlled trial evidence for superiority to placebo (clonidine, modafinil, imipramine, pemoline) and some with limited trial evidence or anecdotal tributes or randomized controlled trial evidence in specific groups (e.g., tiapride, nicotine patches, guanfacine). They should all be used with specialist guidance. If medication has been effective, then a review of the case should be conducted. What coexistent problems still need intervention, and of what kind? What is the child’s and family’s attitude to the success of treatment? Will they rely on it to the exclusion of educational adjustment or other kinds of help? DISORDERS OF ATTENTION AND ACTIVITY 535 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 535

Will they now attribute all the child’s successes to the drug rather than their efforts? Do they have an understanding of the limits within which dosage can be varied in response to changing circumstances? A good response to medication is sometimes taken as a proof that the diagnosis of ADHD was correct: this is not logical, because of the evidence that ordinary people respond in qualitatively similar ways (see p. 522). At most, a substantial reduction in hyperactive behavior can be partially helpful in making inferences about how much functional impairment was attributable to that problem. The question of the length of time for which medication should be continued has not been answered scientifically. Accordingly, an individual approach needs to be taken. At agreed intervals (e.g., once a year) the medicine should be discontinued for a trial period, preferably lasting 2 weeks, to determine whether it is still required. For preschool children, there has been a beginning of randomized controlled trials of psychological and pharmacological therapies. The most promising intervention is parent training – but this recommendation is based on practice, for there have been few comparative trials. Sonuga-Barke et al. (2001) made a comparison between this, a program of parent counseling and support, and a waiting list control. Parent training was more effective than the other interventions in reducing the symptoms of ADHD and of oppositional defiant disorder, and it also increased the mother’s sense of general well-being. The gains in the parent training group were not entirely transient: they were still present at a 15-week follow-up. The investigators in another trial compared behavioral family intervention (in both standard and enhanced forms) with a waiting list control and again found that the experimental groups showed reduced levels of behavior problems and greater competence by the parents (Bor, Sanders, & Markie-Dodds, 2002). In this study also, gains were maintained at follow-up, and this time the follow-up period was 1 year. Compared with the school-aged years there has been little published systematic research about drug treatment in preschool children. The few studies of the stimulants in this age group suggest that they can indeed reduce impulsiveness and improve general social adjustment more effectively than a placebo (Kratochvil, Egger, Greenhill et al., 2006). They may also improve the quality of mother–child relationships. To set against this, the short-term safety and longer term side-effects of medication for children less than 4 years old is uncertain. This does not seem to have deterred many US physicians from using it in this age group, but risks would need much more understanding before medication in this age group could be considered rational. Dietary treatments, if effective, would be of particular relevance in this age group, while it is still feasible to control what children are eating. Schab and Trinh (2004) have reviewed the evidence about artificial colors from randomized controlled trials, and suggest a small but positive effect size around 0.2 SD. The most promising avenues have been those excluding any of a range of foodstuffs to which a child may have an idiosyncratic response; all four controlled trials addressing the issue have found significant effect sizes, either by comparing a restricted with an ordinary diet or by crossover studies of the reintroduction of incriminated foodstuffs by comparison with harmless items. However, care should be taken to avoid a progressive round of arduous restriction in the absence of clear evidence of benefit. For adults, meta-analysis indicates that stimulants and atomoxetine are more effective than placebo (Banaschewski et al., 2006; Faraone, Spencer, Aleardi et al., 2004). Child and adolescent psychiatrists are increasingly asked to manage adult cases because of their understanding of the disorder from experience with young people, and the increasing recognition by adults and society that conditions of inattentiveness and impulsive overactivity can be persistently impairing and usefully treatable. Consensus guidelines have been developed by Baldwin, Anderson, Nutt et al. (2005). The future should bring advances from research to clinical practice. Understanding the neuropsychological basis should make psychological intervention programs more rational, and monitoring medication more effective. New medications should appear from molecular research, with enhanced safety and acceptability or with clearer indications, such as in comorbid situations. More fundamentally, the controversies over how broadly to recognize and when to treat should be susceptible to research on the nosology, later outcomes and influences on course for children whose inattention and impulsivity present as a problem for themselves and those around them. References Aardoom, H. A., Hirasing, R. A., Rona, R. J., Sanavro, F. L., vandenHeuvel, E. W., & Leeuwenburg, J. (1997). Food intolerance (food hypersensitivity) and chronic complaints in children: The parents’ perception. European Journal of Pediatrics, 156, 110– 112. Adler, L. A., Kessler, R. C., & Spencer, T. (2004). Adult ADHD SelfReport Scale-V1.1 (ASRS-v1.1) Symptom Checklist. New York, NY. Retrieved from www.med.nyu.edu/psych/assets/adhdscreen18.pdf. 27/09/07 Alexander, G. E., & Crutcher, M. D. (1990). Functional architecture of basal ganglia circuits: Neural substrates of parallel processing. Trends in Neurosciences, 13, 266–271. Aman, M. G., Smedt, G. D., Derivan, A., Lyons, B., & Findling, R. L. (2002). Double-blind, placebo-controlled study of risperidone for the treatment of disruptive behaviours in children with subaverage intelligence. American Journal of Psychiatry, 159, 1337– 1346. American Psychiatric Association (APA). (2000). Diagnostic and Statistical Manual of Mental Disorders, version IV, text revision. Washington, DC: American Psychiatric Association. Antrop, I., Roeyers, H., Van Oost, P., & Buysse, A. (2004). Stimulation seeking and hyperactivity in children with ADHD. Journal of Child Psychology and Psychiatry, 41, 225–231. Arcos-Burgos, M., Castellanos, F. X., Pineda, D., Lopera, F., Palacio, J. D., Palacio, L.G., et al. (2004). Attention-deficit/hyperactivity disorder in a population isolate: Linkage to loci at 4q13.2, 5q33.3, 11q22, and 17p11. American Journal of Human Genetics, 75, 998– 1014. Arnsten, A. F. T., & Goldman-Rakic, P. S. (1998). Noise stress impairs prefrontal cortical cognitive function in monkeys: Evidence for a hyperdopaminergic mechanism. Archives of General Psychiatry, 55, 362–368. CHAPTER 34 536 9781405145497_4_034.qxd 29/03/2008 02:51 PM Page 536