Psychopathology in Children and Adolescents with Autism Compared to Young People with Intellectual Disability

Autism is a neurodevelopmental disorder with a specific pattern of behavioural, communication and social problems. Additional mental health problems are often poorly understood and undetected. This study investigates the level and pattern of emotional and behavioural problems in young people with autism compared with children with intellectual disability (ID). Subjects were 381 young people with autism and a representative group of 581 Australian young people with ID aged 4–18 years. Parents/carers provided details of the emotional and behavioural problems of their child using the Developmental Behaviour Checklist (DBC-P). Young people with autism were found to suffer from significantly higher levels of psychopathology than young people with ID. The implications of this finding are discussed.     

Depressive symptoms in older female carers of adults with intellectual disabilities

Background This survey study aims to examine the prevalence and factors associated with depressive symptoms among primary older female family carers of adults with intellectual disabilities (ID). Method In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained standardised scales to assess carer self‐reported depressive symptoms, social support, caregiving burden and disease and health, as well as adult and carer sociodemographic information. Multiple linear regressions were used to identify the factors associated with high depressive symptoms in carers. Results Between 64% and 72% of these carers were classified as having high depressive symptoms. The factors associated with carer self‐reported depressive symptoms were carer physical health, social support and caregiving burden; overall, the carer self‐reported physical health was a stronger factor associated with depressive symptoms than their physical disease status. The level of the adult with ID's behavioural functioning and the carer age, marital status, employment status, education level and the family income level were not significantly associated with carer depressive symptoms. Conclusions The factors identified in this study as correlating with self‐reported depressive symptoms suggest that researchers and mental health professionals should collaborate to help improve the physical health and social support networks of the most vulnerable older female family carers. This should reduce depressive symptoms directly among this high‐risk group.     

Prevalence of psychiatric disorders in children and adolescents with and without intellectual disability

Background There have been very few population‐based studies of the prevalence of psychiatric disorders among children and adolescents with and without intellectual disability (ID). Methods Secondary analysis of the 1999 Office for National Statistics survey of the Mental Health of Children and Adolescents in Great Britain was performed. This survey collected information on a multistage, stratified, random sample of 10 438 children between 5 and 15 years of age across 475 postcode sectors in England, Scotland and Wales. Results The prevalence of any diagnosed ICD‐10 disorder, conduct disorder, anxiety disorder, hyperkinesis and pervasive developmental disorders were significantly greater among children with ID than among their non‐ID peers. There were no statistically significant differences between children with and without ID with regard to the prevalence of depressive disorders, eating disorders or psychosis. Factors associated with an increased risk of psychopathology among children and adolescents with ID included age, gender, social deprivation, family composition, number of potentially stressful life events, the mental health of the child's primary carer, family functioning and child management practices. Conclusions Children and adolescents with ID are at significantly increased risk of certain forms of psychiatric disorder. Careful consideration of the social and economic adversity facing such families will be necessary to ensure that support services are responsive to both the needs of child as well as the needs of the family in which they are living.     

Population prevalence of psychopathology in children and adolescents with intellectual disability: II epidemiological findings

This paper reports findings from an epidemiologically derived population in a multicentre study in NSW, Australia. The design of this study is described in the accompanying paper. Those with mild intellectual disability (ID) were likely to have been underascertained, but identification and participation rates for those with more severe ID were high. The study found that in the regions surveyed 40.7% of those with ID and aged between 4 and 18 could be classified as having severe emotional and behaviour disorder or as being psychiatrically disordered. The profoundly intellectually handicapped had lower levels of disturbance overall compared with those with mild, moderate and severe ID. The level of ID affected scores on a number of behavioural dimensions, with disruptive and antisocial behaviours more prominent in the mild ID group, and ‘self–absorbed’ and ‘autistic’ behaviours more prominent in those with severe ID. Age and sex did not affect prevalence, a finding that is in contrast to that found in general child psychopathology. The study found that fewer than 10% of children with intellectual disability and major psychiatric disorder had received specialist assistance.     

Effect of perceived stigmatisation on the quality of life among ageing female family carers: a comparison of carers of adults with intellectual disability and carers of adults with mental illness

Background   Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers' QoL between family carers of adults with ID and family carers of adults with MI and aim to examine the effect of these differences in stigma on carer QoL between the two groups.
Methods   A structural survey interview was administered to 350 female family carers supporting persons with ID and 66 female carers supporting persons with MI; the carers were aged 55 years and older, and the interviews were carried between July 2006 and April 2007 at the carers' homes in a county in Taiwan. The survey package contained standardised scales to measure the carer's stigma, social support, QoL and health as well as adult and carer socio-demographic data.
Results   The results highlight that in both groups the ageing female family carers' health and social support were strongly associated with the level of their QoL even though there was also a strong effect of carers' perceived stigma on their QoL. Contrary to previous findings, ageing female family carers of adults with MI had a higher level of QoL compared with the carers of adults with ID. Hierarchical regressions show a stronger effect of perceived stigma on the carer QoL among the family carers of adults with MI than among the carers of adults with ID.
Conclusions   This study suggests that attempts to improve these female older family carers' health and social support must include their lifelong unmet needs in terms of how to cope with the perceived stigma associated with their position.     

Neurodevelopmental correlates of behavioural and emotional problems in a neuropaediatric sample

Most research does not address the overlap between neurodevelopmental disorders when investigating concomitant mental health problems. The purpose of the present study was to examine the association of intellectual disability (ID), autism spectrum disorder (ASD), and attention-deficit/hyperactivity disorder (ADHD) with the presence of behavioural and emotional problems after controlling for other well-known correlates and risk factors. The sample included 4- to 18-year-old children who attended neuropaediatric clinics (N = 331). After controlling for adversity, age, gender, other developmental/neurological disorders, parental emotional problems, and parenting strategies, the presence of ADHD but not ASD or ID was uniquely associated with behaviour problems. Neither ADHD nor ASD nor ID was significantly associated with emotional problems after controlling for other risk factors. However, ADHD, ASD and behavioural/emotional disorders but not ID were significantly associated with functional impairment in everyday activities after controlling for other risk factors. Because children with neurodevelopmental disorders have complex needs, a holistic approach to diagnosis and interventions is highly warranted, including the assessment and treatment of behavioural and emotional disorders.     

The development of a new measure for the assessment of psychopathology in adults with intellectual disability

Background   People with intellectual disability (ID) and untreated psychiatric disorder lead unnecessarily difficult and unhappy lives. The prevalence of mental illness in children and adults with ID is greater than that found in the general population. A carer-completed checklist of psychopathology that could be used with both children and adults would help identify those individuals with ID most likely to have a mental health problem, help ensure that they receive the limited services that are usually available and also assist the process of clinical assessment, diagnosis and management.
Method   This research aimed to develop a reliable and valid carer-completed checklist of psychopathology for adults with ID by redeveloping an existing measure for children with ID, the Developmental Behaviour Checklist (DBC-P). The new checklist, The Developmental Behaviour Checklist for Adults (DBC-A) was devised by changing, deleting and adding to DBC-P items. Reliability studies were conducted with paid and family carers, and DBC-A scores were compared with the results from two other measures of psychopathology.
Results   One DBC-P item was deleted, seven items changed and 12 items added. The psychometric properties of this new checklist, the DBC for Adults with ID (DBC-A), were investigated and found to be satisfactory. Intraclass correlations for test-retest and inter-rater reliability ranged from 0.72 to 0.85, and concurrent validity with two measures of emotional and behavioural disturbance was satisfactory.
Conclusions   The carer-completed DBC-A provides a broad and comprehensive survey of the emotional and behavioural problems of adults with ID. It has satisfactory psychometric properties and therefore can be used with confidence in clinical, research and service settings, and its development allows continuous assessment of psychopathology across the lifespan for all people with ID.     

Behavioural and emotional problems in children with intellectual disability attending special schools in Cape Town, South Africa

A sample of 355 children with intellectual disability (ID) attending special schools in Cape Town, South Africa, were assessed on the Developmental Behavioural Checklist – Teacher Version (DBC‐T). A prevalence rate of 31% for psychopathology was found. Boys manifested more behaviour problems than girls, especially in relation to disruptive, self‐absorbed and antisocial behaviours. Children with severe and profound levels of ID showed more behavioural difficulties than those in the mild and moderate categories. Specific behaviour problems were self‐absorbed and autistic behaviours in children with profound ID, communication problems and anxiety in those with severe ID and antisocial behaviour in children with mild ID. Epilepsy, but not cerebral palsy was associated with higher total behaviour scores. Ambulant children were more disruptive and antisocial, while non‐ambulant children were more anxious. Non‐verbal children had higher scores on all of the subscales except for disruptive behaviour.     

Supporting parents of youths with intellectual disabilities and psychopathology

Background Parents of children and adolescents with both intellectual disabilities (ID) and psychopathology often experience high levels of parenting stress. To support these parents, information is required regarding the types of support they need and whether their needs are met. Method In a sample of 745 youths (aged 10–24 years) with moderate to borderline ID, 289 parents perceived emotional and/or behavioural problems in their child. They were asked about their needs for support and whether these needs were met. Logistic regression analysis revealed the variables associated with both needing and receiving specific types of support. In addition, we asked those parents who had refrained from seeking support about their reasons. Results Most parents (88.2%) needed some supports, especially a friendly ear, respite care, child mental health care and information. Parents who perceived both emotional and behavioural problems in their child needed support the most. In addition, parents whose child had any of these problems before the past year, who worried most about their child and suffered from psychopathology themselves, more often needed support. Parents of children with moderate ID or physical problems especially needed ‘relief care’, that is, respite care, activities for the child and practical/material help. The need for a friendly ear was met most often (75.3%), whereas the need for parental counselling was met least often (35.5%). Not receiving support despite having a need for it was primarily related to the level of need. Parents who indicated to have a stronger need for support received support more often than parents who had a relatively low need for support. The parents’ main reasons for not seeking support concerned their evaluation of their child’s problems (not so serious or temporary), not knowing where to find support or wanting to solve the problems themselves first. Conclusions Most parents had various support needs that were frequently unmet. Service providers should especially aim at providing information, activities, child mental health care and parental counselling. Furthermore, parents need to be informed about where and how they can obtain what kind of support. A case manager can be of help in this.     

Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems

Background During the last decade, there has been a growing interest in outpatient support services for persons with intellectual disability (ID) and psychiatric and/or behavioural problems and their families. In this study, we explore the family burden that is associated with children or adults with ID and behavioural or psychiatric problems living at home. Method The research group consisted of 66 clients of In Casa, a project of outpatient treatment. Their average age is 18.97 years and their average IQ 55.37. The Reiss Screen for Maladaptive Behaviour (adults) or Reiss Scales for Children's Dual Diagnosis (children) and the Nijmegen Family Situation Questionnaire have been administered. Results About 62% of the children and 86% of the adults living at home and referred to In Casa have severe psychiatric or behavioural problems as measured by the Reiss scales. The dual diagnosis has a more negative impact on the family situation than the condition of ID only. Conclusion Parents consider the psychiatric or behavioural problems of their child to be an extra burden and feel it more difficult to raise and manage such a child. This impels them to change the situation and to call on the help of external services. Some methodological questions and the implications of the findings in terms of support needs are discussed.     

Factors associated with the risk of behaviour problems in adolescents with severe intellectual disabilities

Background Little is known about the factors affecting the risk of behavioural and emotional problems in young people with severe intellectual disability (ID), although such evidence as there is suggests that there may be differences between the pattern of risk factors in this group and those that operate in general population samples of the same age. Method From a sample of 111 children with severe ID who had been initially identified from the registers of six special schools at 4–11 years, 82 were traced and reassessed on average 5 years 4 months later. The relationships between potential risk factors and behaviour problems, reported here for 11:00–17:04 year olds, were assessed by means of parental interview conducted in the family home. Results Behaviour problems were associated with the severity of ID and the severity of autistic symptomatology. Perhaps surprisingly, they were also more common in pre‐pubertal than post‐pubertal adolescents. Family factors such as a history of interrupted/disrupted maternal care, parental criticism of the child and aggressive parental disciplinary practices were also associated with behaviour problems, although the direction of causation was unclear. Several factors, including gender, social disadvantage and epilepsy, well established as risk factors in children without ID, were not significantly associated with behaviour problems in the present sample. Conclusion The findings suggest that the pattern of factors associated with behaviour problems in children with severe ID differs from that found both in the general population and in children with mild ID.     

Emotional and behavioural symptoms in 8–9-year-old children in relation to family structure

The association between family structure and behavioural and emotional symptoms in prepubertal children was studied in an epidemiological survey conducted in Finland. Five thousand eight hundred thirteen children aged 8 and 9 years were screened using the Rutter Parent Questionnaire (RA2) for parents and the Rutter Teacher Questionnaire (RB2) for teachers. Information concerning family type, birth order and sibship size were obtained from the parents. The majority of the children (84%) in the sample lived with both their biological parents, 10% with a single parent, and around 5% with a biological parent and a stepparent. Around 1% of the children lived outside their original home. The prevalence of behavioural and emotional symptoms was lowest in children living with both their biological parents and highest among children living outside their original home according to both parents’ and teachers’ reports. Children living with a parent and a stepparent had problems more often at home, but less often at school than children living with a single parent. Living with a single father was associated with having more externalising, school-related problems, while living with a stepfather was associated with having more internalising, home related problems. Having younger siblings seemed to be associated with fewer problems at school, and being the youngest child with having less problems both at home and at school.     

Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability

Background   Social support has been identified as a major protective factor in preventing mental health problems and also as a major contributor to quality of life. People with intellectual disabilities (ID) have been identified as having limited social support structures. Interventions have been focused on promoting their social presence and integration. However, previous studies have shown that this does not always lead to the formation of social relationships. To date few studies have looked at how having an ID leads to impoverished social networks. This study aimed to do this by contrasting the social relationships of people with physical disabilities (PD) and people with ID.
Methods   Two groups of participants were recruited; 30 people with mild ID and 17 people with PD. Social and functional support networks were assessed, in addition to life experiences. Between and within group differences were then explored statistically.
Results   Adults with ID had more restricted social networks than PD, despite being involved in more activities. Social support for adults with ID was mainly provided by family and carers and few relationships with non-disabled people were identified. In contrast adults with PD had larger social networks than had been reported in the mainstream literature and had a balance of relationships with disabled and non-disabled people.
Conclusions   The results suggest that there are additional processes attached to having an ID, which lead to continued impoverished lifestyles. The findings also endorse other work that suggests being physically integrated and engaged in a wide range of activities does not guarantee good social and emotional support.     

Behavior Problems Increase Costs of Care of Children With Intellectual Disabilities

It is well known that communities face high costs in the care of individuals with intellectual disability (ID). Factors that influence those costs are less well studied. This study examined the relationship between behavioral problems and the costs of caring for children with ID. Parents/family carers of 109 children with ID were surveyed using a modified version of the Client Service Receipt Inventory and the Developmental Behaviour Checklist. Behavioral and emotional disturbance was associated with increased cost of care for parents of children with ID. Such results demonstrate that effective early intervention services aimed at redressing behavioral problems have the potential to reduce costs of care. However, such programs will also need to be affordable if they are to have adequate reach and adoption.     

Prevalence, aetiology and comorbidity of severe and profound intellectual disability in Finland

Background The aim of the present study was to describe the aetiology, associated impairments and prevalence of severe and profound intellectual disability (SPID) in Finland. Methods The number of people with SPID in the catchment area of the Pääjärvi Centre for the Mentally Retarded, Lammi, Finland, (total population = 341 227) was calculated from the client register of this centre. Aetiological factors and background diagnoses for all subjects with SPID were analysed retrospectively. Results The number of people with SPID was 461, giving a prevalence of 0.13%. The aetiology of their SPID was genetic or congenital in 235 (50.9%) individuals, acquired in 89 (19.3%), genetic and/or acquired in 84 (18.3%), and unknown in 53 (11.5%) subjects. Out of the 53 individuals with an SPID of unknown origin, 48 (90.6%) had an associated impairment; the remaining five were the only members of the study group showing normal growth, and having neither dysmorphic features, physical abnormalities nor family members with ID. Out of the 461 subjects, 422 (91.5%) had between one and six associated impairments (total = 954), and the remaining 39 (8.5%) had SPID as their only impairment. Uncomplicated SPID was mainly of genetic or congenital origin, whereas all subjects with acquired encephalopathy had multiple disabilities. Speech defects, epilepsy and cerebral palsy were the most common associated impairments. Conclusions Severe and profound ID almost always occurs concomitantly with other severe neurological or psychiatric impairments. The proportion of people with SPID described in the present study is similar to that found in Finland in 1966. The aetiology of SPID in the vast majority of cases is biopathological.     

Outcomes following childhood head injury: a population study

OBJECTIVES: To identify outcomes following head injury (HI) among a population of children admitted to one hospital centre and to compare outcomes between different severity groups. METHODS: A postal follow up of children admitted with HI to one National Health Service Trust, between 1992 and 1998, was carried out. Children were aged 5-15 years at injury (mean 9.8), followed up at a mean of 2.2 years post-injury. Parents of 526 injured children (419 mild, 58 moderate, 49 severe) and 45 controls completed questionnaires. Outcomes were assessed using the King's Outcome Scale for Childhood Head Injury (KOSCHI). RESULTS: Frequent behavioural, emotional, memory, and attention problems were reported by one third of the severe group, one quarter of the moderate, and 10-18% of the mild. Personality change since HI was reported for 148 children (28%; 21% mild HI, 46% moderate, 69% severe). There was a significant relationship between injury severity and KOSCHI outcomes. Following the HI, 252 (48%) had moderate disability (43% mild HI, 64% moderate, 69% severe), while 270 (51%) made a good recovery (57% mild HI, 36% moderate, 22% severe). There was a significant association between social deprivation and poor outcome (p = 0.002). Only 30% (158) of children received hospital follow up after the HI. All children with severe disability received appropriate follow up, but 64% of children with moderate disability received none. No evidence was found to suggest a threshold of injury severity below which the risk of late sequelae could be safely discounted. CONCLUSIONS: Children admitted with mild HI may be at risk of poor outcomes, but often do not receive routine hospital follow up. A postal questionnaire combined with the KOSCHI to assess outcomes after HI may be used to identify children who would benefit from clinical assessment. Further research is needed to identify factors that place children with mild HI at risk of late morbidity.     

Care needs assessment of older Chinese individuals with dementia of Hong Kong

Using the Care Needs Assessment Pack for Dementia (CarenapD), the care needs of older Hong Kong Chinese individuals with dementia were investigated in the present study. A convenience sample of 197 community-dwelling older adults with dementia, with a mean age of 77, was examined. Among the participants, 71 were classified with a Clinical Dementia Rating (CDR) score of 1 (mild impairment), 100 with a CDR score of 2 (moderate impairment), and 26 with a CDR score of 3 (severe impairment). CarenapD, consisting of 57 activity/behavioural items, was used to evaluate the status of care needs as 'No', 'Met' or 'Unmet' in seven domains of functioning. The results suggested that the care needs of participants with increasing severity of cognitive impairment became diversified and evident in activities related to complex and instrumental daily living tasks, social interaction, thinking and memory, and behaviour and mental state. Unmet care needs were identified in 10 items that are mainly associated with social interaction, memory, and mental state. Formal service providers are suggested to formulate support services that are appropriate to address the care needs for persons with dementia and family carers.     

Speech,language, and cognitive development in children with isolated sagittal synostosis

This study investigated the occurrence, nature, and severity of speech, language, and cognitive impairment in 76 children (61 males, 15 females) with isolated sagittal synostosis (ISS) aged 9 months to 15 years 7 months. There was no increased prevalence of global cognitive impairment in the group but there was a high prevalence rate of speech and/or language impairment with 28 (37%) displaying impairment of whom 20 (71%) had moderate or severe impairments that fulfilled the criteria for specific impairments. Prevalence rates were only increased for children over two years of age. Expressive language impairment occurred most frequently. Raised intracranial pressure, peri-neonatal risk factors, otitis media, or being operated were not associated with impairment. Surgery at a later age and a family history of speech and language impairment were both associated with impairments but numbers were small. The findings suggest that children with ISS are at an increased risk of developing speech and language impairment.