Social and community inclusion outcomes for adults with autism with and without intellectual disability in Australia.

BACKGROUND: Research suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employment, education, living arrangements, friendships, and social satisfaction, for autistic adults with and without intellectual disability. METHOD: Eighty-four adults with autism (mean age 34.2 years, SD = 4.5; 67% with co-occurring intellectual disability), recruited as children and adolescents, participated in the current study. Adult social and community inclusion outcomes were explored through interview and questionnaire, both parent/carer-report and self-report. RESULTS: Participants predominantly lived with family or in supported accommodation, did not pursue higher education, and mostly participated in day activity programmes. Most had limited friendships as reported by parents/carers; however, self-report data (n = 28) indicated that adults were largely satisfied with their social relationships. Overall outcome was poor for 57%, and good/very good for 34%. Adults with intellectual disability generally had poorer outcomes. CONCLUSION: Autistic adults encountered numerous difficulties in leading an independent life. Adults with co-occurring intellectual disability were most likely to experience difficulties; however, outcomes ranged from poor to very good for adults without intellectual disability. Discrepancies in parent/carer-report and self-reported experiences of friendships highlight the need to ensure individual experiences are captured in addition to parent/carer-report. Appropriate resources and programmes are crucial for adults with autism to support them to have the choice to live independently.

Concurrence of the strengths and difficulties questionnaire and developmental behaviour checklist among children with an intellectual disability.

BACKGROUND: The Strengths and Difficulties Questionnaire (SDQ) is widely used to measure emotional and behavioural problems in typically developing young people, although there is some evidence that it may also be suitable for children with intellectual disability (ID). The Developmental Behaviour Checklist - Parent version (DBC-P) is a measure of emotional and behavioural problems that was specifically designed for children and adolescents with an ID. The DBC-P cut-off has high agreement with clinical diagnosis. The aim of this study was to estimate the relationship between DBC-P and SDQ scores in a sample of children with ID. METHOD: Parents of 83 young people with ID aged 4-17 years completed the parent versions of the SDQ and the DBC-P. We evaluated the concurrent validity of the SDQ and DBC-P total scores, and the agreement between the DBC-P cut-off and the SDQ cut-offs for 'borderline' and 'abnormal' behaviour. RESULTS: The SDQ total difficulties score correlated well with the DBC-P total behaviour problem score. Agreement between the SDQ borderline cut-off and the DBC-P cut-off for abnormality was high (83%), but was lower for the SDQ abnormal cut-off (75%). Positive agreement between the DBC-P and the SDQ borderline cut-off was also high, with the SDQ borderline cut-off identifying 86% of those who met the DBC-P criterion. Negative agreement was weaker, with the SDQ borderline cut-off identifying only 79% of the participants who did not meet the DBC-P cut-off. CONCLUSION: The SDQ borderline cut-off has some validity as a measure of overall levels of behavioural and emotional problems in young people with ID, and may be useful in epidemiological studies that include participants with and without ID. However, where it is important to focus on behavioural profiles in children with ID, a specialised ID instrument with established psychometric properties, such as the DBC-P, may provide more reliable and valid information.

Syndrome specific modules to enhance the Stepping Stones Triple P public health intervention.

BACKGROUND: Service responses to behaviour phenotypes include care by expert clinicians, syndrome-specific clinics, disability-specific mental health services and generic mental health services. While these services contribute to care, they are often of limited accessibility. METHODS: We describe a population-wide public health intervention aimed at increasing the accessibility of services to the target population. Stepping Stones Triple P (SSTP) is a public health intervention of known efficacy in reducing behaviour problems when delivered to parents of children aged 0-12 with mixed developmental disabilities. RESULTS: The strategy we discuss involves enhancing SSTP with modules for specific causes of developmental disabilities including Down, Fetal Alcohol, Fragile X, Prader-Willi and Williams syndromes. CONCLUSIONS: We propose that enhancing SSTP with syndrome specific modules will increase the accessibility of support to families who have a child with a specific behaviour phenotype. We suggest that future research should confirm the public health impact of the modified SSTP programme using the RE-AIM framework.

The effect of oxytocin nasal spray on social interaction deficits observed in young children with autism: a randomized clinical crossover trial.

Interventions for autism are limited. The synthetic hormone oxytocin may provide a potential treatment to improve core social and behavioral difficulties in autism, but its efficacy has yet to be evaluated in young children who potentially may benefit to a greater extent. We investigated the efficacy, tolerability and safety of oxytocin treatment in young children with autism using a double-blind, randomized, placebo-controlled, crossover, clinical trial. Thirty-one children with autism received 12 International Units (IU) of oxytocin and placebo nasal spray morning and night (24 IU per day) for 5 weeks, with a 4-week washout period between each treatment. Compared with placebo, oxytocin led to significant improvements on the primary outcome of caregiver-rated social responsiveness. Overall, nasal spray was well tolerated, and the most common reported adverse events were thirst, urination and constipation. This study is the first clinical trial to support the potential of oxytocin as an early intervention for young children with autism to help improve social interaction deficits.

Association between adaptive behaviour and age in adults with Down syndrome without dementia: examining the range and severity of adaptive behaviour problems.

BACKGROUND: Studies on adaptive behaviour and ageing in adults with Down syndrome (DS) (without dementia) have typically analysed age-related change in terms of the total item scores on questionnaires. This research extends the literature by investigating whether the age-related changes in adaptive abilities could be differentially attributed to changes in the number or severity (intensity) of behavioural questionnaire items endorsed. METHODS: The Adaptive Behaviour Assessment System-II Adult (ABAS-II Adult) was completed by parents and caregivers of 53 adults with DS aged between 16 and 56 years. Twenty adults with DS and their parents/caregivers were a part of a longitudinal study, which provided two time points of data. In addition 33 adults with DS and their parents/caregivers from a cross-sectional study were included. Random effects regression analyses were used to examine the patterns in item scores associated with ageing. RESULTS: Increasing age was found to be significantly associated with lower adaptive behaviour abilities for all the adaptive behaviour composite scores, expect for the practical composite. These associations were entirely related to fewer ABAS-II Adult items being selected as present for the older participants, as opposed to the scores being attributable to lower item severity. CONCLUSIONS: This study provides evidence for a differential pattern of age-related change for various adaptive behaviour skills in terms of range, but not severity. Possible reasons for this pattern will be discussed. Overall, these findings suggest that adults with DS may benefit from additional support in terms of their social and conceptual abilities as they age.

Outcomes in young adulthood: are we achieving community participation and inclusion?

BACKGROUND: Despite recognition of the importance of integrated community living and support, there is evidence that parents remain the primary caregivers of young adults with intellectual disability (ID). In addition, employment rates remain low in this population. This study aimed to investigate the changes in living arrangements and participation in daytime activities over time in a community population of young people with ID. METHOD: The sample consisted of 536 participants aged 4.0-18.9 years at Wave 1, followed up at Wave 5 when aged 20.5-37.6 years. Information was collected on their living arrangements and daytime activities at both time points, along with living skills and information on community social inclusion at Wave 5. For parents still caring for their adult child with ID, information was also collected on parental ratings of their own mental and physical health, and their satisfaction with the long-term care arrangements for their adult child. RESULTS: A significant proportion of young people were still living with their parents at Wave 5. A greater proportion of those with a severe-profound degree of ID were living in residential care. Parents caring for their adult child reported high levels of mental health problems and dissatisfaction with the long-term care arrangements for their child. A small proportion of young people were in paid employment, and the majority was engaged in structured activities provided for those with an ID. Over one-third of the sample participated in a structured daytime activity for 10 or fewer hours per week, and 7% were not engaged in any structured daytime activity. CONCLUSIONS: These results suggest that adequate provision of accommodation and employment services for young adults with an ID is lacking. In many cases the responsibility of care continues to reside with parents as their children transition from childhood to adulthood. Greater attention is needed to address these issues and facilitate social inclusion and integration for young people with ID.

Inter-rater reliability of the Developmental Behaviour Checklist for Adults in community accommodation settings.

BACKGROUND: With the publication of the Developmental Behaviour Checklist for Adults (DBC-A), people of all ages with intellectual disability (ID) can now be assessed using a carer-completed screening checklist of emotional and behavioural disturbance. This provides a broad assessment framework across the life span, assists the process of clinical assessment, diagnosis and management, and, through efficient screening, helps ensure that people with ID and high levels of disturbed behaviour are more likely to receive the often scarce and costly behavioural and mental health services that are available. Earlier studies have reported acceptable results of test-retest reliability studies with family members and paid carers in community settings and the results of an inter-rater reliability study completed with family members. This study reports on another aspect of DBC-A reliability, inter-rater reliability with paid carers, in two small community-based accommodation settings. METHOD: Participants were 38 pairs of paid carers employed by two non-government agencies providing residential services in small group homes to 38 adults with ID in the community. RESULTS: An intraclass correlation coefficient (ICC) of 0.69 (n = 38, 95% CI 0.54-0.86) was found between pairs of paid carers employed in small group homes. DISCUSSION: Pairs of paid carers working with adults with ID in small group homes reliably completed DBC-A checklists. An ICC result of 0.69 compares favourably with the results of an earlier inter-rater study completed with the family members of people with ID living in the community. Inter-rater reliability on the six DBC-A sub-scales was also computed and the results were 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, which have been further extended. The DBC-A can be used in clinical, research and service settings to assess psychopathology across the adult life span in people with ID.

Behavioural and emotional problems in people with severe and profound intellectual disability.

BACKGROUND: People with severe and profound levels of intellectual disability (ID) are frequently examined as a single group in research. However, these two groups may be significantly different, particularly in the area of emotional and behavioural difficulties. METHOD: The Developmental Behaviour Checklist (DBC) was completed by parents and caregivers of 107 people with severe ID and 22 people with profound ID at four time periods across 12 years. Regression analyses were used to examine trends in sub-scale scores across time and groups. RESULTS: Significant differences between the groups of people with severe and profound ID were found. People with profound ID had significantly lower scores across all sub-scales except Social Relating. This was usually related to fewer items being selected as present for people with profound ID, as opposed to the scores being attributable to lower item severity scores. CONCLUSIONS: There are significant differences between groups of people with severe and profound ID in scores on the DBC, indicating differences in behavioural and emotional problems. Caution should be exercised by researchers treating these two disparate groups as a single group, and by practitioners translating such findings into practice.

Screening for autism in young children with developmental delay: an evaluation of the developmental behaviour checklist: early screen.

The ability to identify children who require specialist assessment for the possibility of autism at as early an age as possible has become a growing area of research. A number of measures have been developed as potential screening tools for autism. The reliability and validity of one of these measures for screening for autism in young children with developmental problems was evaluated. The parents of 207 children aged 20-51 months completed the Developmental Checklist-Early Screen (DBC-ES), prior to their child undergoing assessment. Good interrater agreement and internal consistency was found, along with significant correlations with a clinician completed measure of autism symptomatology. High sensitivity was found, with lower specificity for the originally proposed 17-item screening tool and a five-item version.

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.

Assessment of change with the Developmental Behaviour Checklist.

BACKGROUND: The Developmental Behaviour Checklist (DBC) is a 96-item instrument designed for assessing behavioural and emotional problems among young people with intellectual disability. METHODS: The present study investigated the validity of the DBC as a measure of change. Changes in individual's DBC scores were correlated with changes in expert clinicians' ratings of the same subjects. RESULTS: A high correlation was found between expert clinician ratings of change in behaviour and change in the total behaviour problem score of the DBC. CONCLUSIONS: The DBC is able to measure changes in behaviour and emotions which are recognized by an experienced clinician who is following the progress of a child with ID.

From efficacy to effectiveness: managing organisational change to improve health services for young people with deliberate self harm behaviour.

Repeat Deliberate Self Harm is a recognised risk factor for completed suicide and therefore reduction by effective health service response represents a valid contribution to suicide prevention. However, only a small fraction of people with deliberate self harm presentations to general health settings actually reach specialist mental health follow-up appointments. Therefore, even if responses at that point are known to be effective they do not make a significant contribution to reducing repeat self-harm overall. We describe health system organisational change strategies to improve health service engagement for the target group, and present data demonstrating the effectiveness of these strategies.

Longitudinal course of behavioral and emotional problems in Williams syndrome.

A follow-up study of behavior and emotional problems in a cohort of young people with Williams syndrome 5 years after first assessment is described. Using a between-/within-subjects factorial layout, we compared scores on the Developmental Behaviour Checklist between young people with Williams syndrome and a large epidemiological control sample of young people with mental retardation due to other causes from Time 1 (1990/1991) to Time 2 (1995/1996). Results showed substantial persistence of the overall level of behavior and emotional problems. However, there were changes in certain types of behavior. Participants with Williams syndrome had significantly higher overall behavioral and emotional problems, communication disturbance, and anxiety over the 5-year period. Further, 10 or 13 checklist items maintained significantly higher levels among the Williams syndrome sample.

Epilepsy and associated psychopathology in young people with intellectual disability.

OBJECTIVE: This study aimed to investigate the role of epilepsy in psychopathology among an epidemiological sample of young people with intellectual disability (ID). The study also compared behavioural and emotional problems in young people on medication to control their epilepsy with those not on medication, and young people with epilepsy who were having current seizure activity with those with no current seizure activity. METHODOLOGY: An epidemiological cohort of 392 participants, representative of the general Australian population of young people with ID, were used in the study. One hundred and fifteen individuals from this cohort were identified as suffering from epilepsy. The Developmental Behaviour Checklist was used to measure symptoms of behavioural and emotional disturbance. RESULTS: Results confirmed that young people with ID and epilepsy did not differ from controls without epilepsy on measures of psychopathology. Furthermore, those with epilepsy on medication had no difference in levels of problem behaviours than epileptics not on medication. CONCLUSIONS: The results suggest that epilepsy has little or no influence on problem behaviours for young people with ID. Our attempt to understand the pathogenesis of behaviour problems in persons with ID may be better directed towards understanding genetic mechanisms than epilepsy pathologies.

Observations on the use of the ICD-10 guide for mental retardation.

In acknowledgement of the challenges posed by the diagnosis of mental disorders in people with intellectual disability (ID), the World Health Organization (WHO) has recently published a multi-axial guide to assist clinicians in applying the ICD-10 to this group of people. The WHO has invited users to review of the ICD-10 Guide for Mental Retardation. In order to review its usefulness in clinical practice, the present authors used the Guide together with the ICD-10 in the psychiatric assessment of 106 young people with ID, and emotional and behavioural problems of varying severity. Strengths and weaknesses in the utility of the Guide were noted. As a result of the clinical audit process, the present authors identified a number of inconsistencies, significant gaps and assertions unsupported by the available literature in the Guide. They also noted aspects of the ICD-10 itself which are problematic when applied to people with ID. Despite these limitations, the Guide is a valuable first attempt to establish a standardized structure for multi-axial diagnosis in this population. A number of suggestions for major changes and refinements to future editions are made, and a strategy for development of research to establish validity and reliability is proposed.

Behavior and emotional disturbance in Prader-Willi syndrome.

To determine if persons with the Prader-Willi syndrome (PWS) have increased psychopathology when compared with matched controls, and whether there is a specific behavior phenotype in PWS, the behavior of 46 persons with PWS was compared with that of control individuals derived from a community sample (N = 454) of persons with mental retardation (MR). Behaviors were studied using the Developmental Behaviour Checklist, an instrument of established validity in the evaluation of behavioral disturbance in individuals with MR. PWS subjects were found to be more behaviorally disturbed than controls overall, and especially in antisocial behavior. In addition, some individual behaviors were more common in PWS subjects than controls. When these behaviors are considered together with findings from other studies using acceptably rigorous methods, a consensus behavior phenotype for PWS can be formulated. This will provide a valid foundation for studies of the mechanism of genetic pathogenesis of behavior in PWS.

Intellectual handicap in contemporary psychiatry.

OBJECTIVE: To apprise readers of the 'state of play' in the psychiatry of intellectual handicap. METHOD: A review was conducted of relevant journals and conference abstracts covering a range of scientific aspects of intellectual disability. Those developments considered to be most significant were summarised. In addition, consideration is given to issues relevant to the politics of disability affecting psychiatric practice in Australia. RESULTS: There have been considerable developments in our understanding of the pathogenesis of intellectual handicap in pharmacotherapy and the behavioural therapies, in the taxonomy of psychopathology, in epidemiology, in delineation of behaviour phenotypes, and in assessment and measurement of psychopathology. CONCLUSION: Intellectual handicap and psychiatry have had a chequered relationship in Australia, but the two fields are now clearly moving again to a closer and more productive collaboration. Recent scientific advances have provided a stimulating environment for this increased activity and interest.

Behavioral and emotional disturbance in individuals with Williams syndrome.

Behavioral and emotional disturbance was assessed in 70 children and adolescents with Williams syndrome. They were compared with an epidemiological control population, which was statistically controlled for age, gender, and level of mental retardation. Those with Williams syndrome were more likely to be diagnosed as suffering psychiatric disorder. The disorder was characterized by anxiety, hyperactivity, preoccupations, and inappropriate interpersonal relating. Significantly increased rates of other individual symptoms were also found, including sleep disturbance and hyperacusis. These results, considered with earlier findings, suggest that there is a valid behavior phenotype of Williams syndrome. This is frequently associated with sufficient impairment to consider inclusion of the behavior phenotype in future official taxonomies of mental disorders.

The use of factor analysis for ascertaining patterns of psychopathology in children with intellectual disability.

The Developmental Behaviour Checklist (DBC) was developed to assess psychopathology in children with intellectual disabilities. A cut-off point between "non-cases' and "cases' was determined by comparison of the total scores with psychiatric clinical assessment. This paper describes a method aimed at determining the types of psychiatric problems in those regarded as "cases'. Factor analysis with varimax rotation carried out on a sample of 1093 subjects extracted six factors. Standardized factor scores were calculated for each subject in a community sample (n = 450), and the only or the dominant positive score was determined for each of the "cases'. Over 80% of "cases' could be allotted to one condition. Only a small number had none, or three or more conditions. The same procedure was replicated on a validation sample (n = 448) with even more satisfactory results. Differences in the prevalence of the six conditions by sex, age and level of mental retardation were ascertained. The validity and clinical relevance of this method are discussed.

Population prevalence of psychopathology in children and adolescents with intellectual disability: I. Rationale and methods.

Our knowledge of the epidemiology of psychopathology in children and adolescents with intellectual disability (ID) is hampered by a number of factors. These include the relative scarcity of studies of children rather than adults, the study of non-epidemiological samples such as those in institutions or those attending psychiatric clinics, a lack of standardized methods of assessment of psychopathology, studies with numbers too small to provide adequate confidence intervals around identified prevalence rates, insufficient detail concerning symptoms or syndromes as well as disorder, and a lack of consistent data concerning the effects of basic demographic variables such as age, sex and IQ. Despite these limitations, it is clear that psychopathology is several times more prevalent in children and adolescents with ID than in those without this disability. This paper reviews findings from previous studies and describes the methodology of a new study using the Developmental Behaviour Checklist.