Types and correlates of school absenteeism among students with intellectual disability.

BACKGROUND: It appears that students with intellectual disability (ID) are more frequently absent from school compared with students without ID. The objective of the current study was to estimate the frequency of absence among students with ID and the reasons for absence. Potential reasons included the attendance problems referred to as school refusal, where absence is related to emotional distress; truancy, where absence is concealed from parents; school exclusion, where absence is instigated by the school; and school withdrawal, where absence is initiated by parents. METHODS: Study participants were 629 parents (84.6% mothers) of Australian school students (Mage  = 11.18 years; 1.8% Aboriginal and/or Torres Strait Islander) with an ID. Participants completed a questionnaire battery that included the School Non-Attendance ChecKlist via which parents indicated the reason their child was absent for each day or half-day absence their child had over the past 20 school days. The absence data presented to parents had been retrieved from school records. RESULTS: Across all students, absence occurred on 7.9% of the past 20 school days. In terms of school attendance problems as defined in existing literature, school withdrawal accounted for 11.1% of absences and school refusal for 5.3% of absences. Students were also absent for other reasons, most commonly illness (32.0%) and appointments (24.2%). Of students with more than one absence (n = 217; 34.5%), about half were absent for more than one reason. Students attending mainstream schools had lower attendance than those attending special schools. CONCLUSIONS: Students with ID were absent for a range of reasons and often for multiple reasons. There were elevated rates of school withdrawal and school refusal. Understanding the reasons for absenteeism can inform targeted prevention and intervention supports.

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.

Attentional Mechanisms in Autism, ADHD, and Autism-ADHD Using a Local-Global Paradigm.

OBJECTIVE: Cognitive flexibility or attentional set-shifting capacity has long been considered a core area of executive dysfunction for individuals with autism. Whether these difficulties are due to higher-level attentional difficulties associated with comorbid ADHD remains unclear. METHOD: The current study compared the performance of 48 participants with autism, ADHD, autism-ADHD, and a comparison group ( N = 12 per group) on a set-shifting task, which included a local-global paradigm. RESULTS: Results of this study revealed that participants with attentional difficulties (autism + ADHD and ADHD alone) exhibited a significant shifting cost (difference between maintaining and shifting attention). CONCLUSION: Attentional difficulties associated with ADHD may be associated with an enhanced attentional shifting cost. Implications of these results were discussed in relation to screening for ADHD symptoms in studies of individuals with autism which seek to determine the neuropsychological profile of this condition.

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.

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.

Quality of life in adults with spinal cord injury living in the community.

STUDY DESIGN: The study design used is cross-sectional descriptive survey. OBJECTIVES: The aim of this study is to describe the subjective and objective quality of life (QoL) of adults with chronic non-traumatic spinal cord injury (NT-SCI) and to compare the objective and subjective QoL of adults with chronic NT-SCI with adults who have a chronic traumatic spinal cord injury (T-SCI) and the general population. SETTING: Living in the general community (non-residential care), Australia. PARTICIPANTS: The study included 443 adults with SCI (T-SCI, n=381) (NT-SCI, n=62), all SCI ≥6 months duration. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Objective and subjective QoL domains--Comprehensive QoL Scale for Adults, version 5 (COMQoL-A5); acceptance subscale--the Spinal Cord Lesion Coping Strategies Questionnaire, version 1 Australia (SCL CSQ v1.0 Australia). RESULTS: Despite demographic differences, only the objective QoL domain material (higher in NT-SCI) and the subjective QoL domain health (lower in NT-SCI) were significantly different between the SCI subgroups. In contrast, five of the seven objective domains and four of the seven subjective domains were significantly lower in the SCI sample as a whole, compared with the general population. Post hoc analyses suggested that aetiology of the SCI was not responsible for QoL differences within the cohort with SCI. CONCLUSION: On the whole, aetiology makes little difference to QoL outcomes after SCI. The QoL of adults with chronic T-SCI and NT-SCI fall significantly below that of the general population in most domains.

Comparison of depression, anxiety and stress in persons with traumatic and non-traumatic post-acute spinal cord injury.

STUDY DESIGN: Community cross-sectional self-report survey of adults with spinal cord injury (SCI). OBJECTIVES: The aim of this study was to examine the likelihood of depression, anxiety and stress in adults with non-traumatic SCI (NT-SCI) compared with adults with traumatic SCI (T-SCI). SETTING: Victoria, Australia. Adults (N=443; NT-SCI n=62) living in the community and attending specialist SCI rehabilitation clinics. METHODS: Participants completed a self-report survey by internet, telephone or hard copy. Items included demographic and injury-related characteristics and the short form Depression, Anxiety and Stress Scale (DASS-21). RESULTS: Persons with NT-SCI were significantly more likely to be female (P<0.05), older (P<0.001) and have lower-level incomplete injuries (P<0.001). The probability of depression, anxiety or stress in respondents with NT-SCI did not differ from persons with T-SCI (P>0.05). Overall, the prevalence of adverse mental health problems defined by scoring above DASS-21 cutoffs, were depression 37%, anxiety 30%, and clinically significant stress 25%. CONCLUSIONS: This study examined multiple mental health outcomes after NT-SCI in Australia. This study provides some evidence that the results of studies of depression, anxiety or stress in persons with T-SCI can be generalised to those with NT-SCI in the post-acute phase. NT-SCI patients are also at substantial risk of poor mental health outcomes. General demographic and injury-related characteristics do not seem to be important factors associated with the mental health of adults with SCI whether the SCI is traumatic or non-traumatic in origin.

Translation and Australian validation of the spinal cord lesion-related coping strategies and emotional wellbeing questionnaires.

STUDY DESIGN: Representative community cross-sectional self-report survey of adults with spinal cord injury (SCI). OBJECTIVES: To establish semantic translation and validation of the Swedish scales--the Spinal Cord Lesion Coping Strategies Questionnaire and the Spinal Cord Lesion Emotional Wellbeing Questionnaire. SETTING: Adults on the Victorian traumatic SCI register and attendees of the nontraumatic outpatient clinic were invited to participate. METHODS: Instruments were forward and backward translated to establish semantic equivalence. Principle components analyses were undertaken. Correlation and logistic regression analyses were conducted to demonstrate validity of the instruments using both positive (high quality of life) and negative (depression and anxiety) psychological outcomes. RESULTS: The final sample consisted of 443 adults with SCI living in the community. Both instruments demonstrated acceptable psychometric properties. Univariate correlation analyses showed most of the new scale components displayed medium to large relationships in the expected direction with the psychological outcomes and the other subscales. Health status and helplessness were significant predictors of both the positive and negative psychological outcomes in the logistic regression analyses. Acceptance was significantly related to the positive outcome only. Female and incomplete tetraplegia categories were significantly and positively related to depression only. CONCLUSION: Notwithstanding a few issues with some of the subscales, the results support the usefulness of these easy to use instruments and point to ways for further development of the scales.

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.

Injury risk in young people with intellectual disability.

Epidemiological studies have established injury as a major public health problem for young people in the general population, but minimal population-based injury information exists on those with intellectual disability (ID). The present study investigated risk factors for injury to subjects in the Australian Child and Adolescent Development (ACAD) programme, which is examining emotional and behavioural problems in young people with ID. Extensive biopsychosocial data for the ACAD programme were collected at two time intervals (i.e. 1990-1991 and 1995-1996). Carer report of medically attended injury over one year was collected for the first time period (1995-1996) on a sample of 465 ACAD subjects (aged 5-29 years) representative of young people with ID (IQ < 70) to determine risk factors for injury using the ACAD biopsychosocial data. Psychopathology [odds ratio (OR)=3.4] epilepsy (OR = 2.4) and an overly sociable temperament (OR=2.2) are associated with injury in young people with ID. Social and family factors had minimal influence on injury risk in this population. Those who are highly disruptive, self-absorbed, anxious, have problems relating socially, have communication disturbance or have attention deficit hyperactivity symptoms are particularly at increased risk for injury. The present study demonstrates a largely under-recognized public health problem of a high unintentional injury risk for young people with ID, and identifies substantial and important risk factors for injury. Injury prevention programmes, with a particular focus on those with highly disturbed behaviours or epilepsy, are warranted in this population.

A deficit in shifting attention present in high-functioning autism but not Asperger's disorder.

The aim of this study was to examine executive functioning, in particular, attentional set-shifting deficits in high-functioning autism (n = 12) and Asperger's disorder (n = 12). A large or global digit composed of smaller or local digits was presented during each trial. The participants indicated the presence of 1s or 2s by pressing the appropriate button. These targets could appear globally or locally Relative to IQ, sex and age matched controls, reaction time to global targets in individuals with autism was retarded when the previous target appeared locally. This deficiency in shifting from local to global processing, however, was not observed in individuals with Asperger's disorder. The theoretical and neurobiological significance of this dissociation in executive functioning in these clinically related disorders was explored.

School refusal: epidemiology and management.

School refusal is differentiated from other attendance problems such as truancy and school withdrawal. It is characterised by the child's emotional upset at the prospect of going to school, parental awareness of and antipathy toward the problem, and an absence of significant antisocial behaviour in the child. The child's emotional upset is frequently associated with an anxiety disorder, but it may also be associated with a mood disorder. School refusal affects approximately 1% of school children across the primary and secondary school levels. Severe and prolonged school refusal jeopardises the young person's social, emotional and academic development, and may be associated with mental health problems in adulthood. A first step in management involves efficient identification and the assessment of contributing and maintaining factors. Clinical outcome studies support the efficacy of cognitive behavioural therapy (CBT). The psychosocial approach encompassed in CBT incorporates anxiety management training with the young person, behaviour management training with parents and consultation with school personnel. Pharmacological treatments are commonly employed although empirical support for their use is limited. Tricyclic antidepressants and selective serotonin (5-hydroxytryptamine; 5-HT) reuptake inhibitors are the more commonly used agents, with the latter having fewer associated adverse effects. It is suggested that the first line of treatment should be CBT, with simultaneous or subsequent pharmacological treatment contingent upon the response to CBT.

Movement preparation in high-functioning autism and Asperger disorder: a serial choice reaction time task involving motor reprogramming.

Autism and Asperger disorder have long been associated with movement abnormalities, although the neurobehavioural details of these abnormalities remain poorly defined. Clumsiness has traditionally been associated with Asperger disorder but not autism, although this is controversial. Others have suggested that both groups demonstrate a similar global motor delay. In this study we aimed to determine whether movement preparation or movement execution was atypical in these disorders and to describe any differences between autism and Asperger disorder. A simple motor reprogramming task was employed. The results indicated that individuals with autism and Asperger disorder have atypical movement preparation with an intact ability to execute movement. An atypical deficit in motor preparation was found in Asperger disorder, whereas movement preparation was characterized by a "lack of anticipation" in autism. The differences in movement preparation profiles in these disorders were suggested to reflect differential involvement of the fronto-striatal region, in particular the supplementary motor area and anterior cingulate.

Are there early features of autism in infants and preschool children?

Autism is characterized by impairments in three areas: (i) reciprocal social interaction; (ii) communication; and (iii) repetitive and stereotyped patterns of interest and behaviour. Despite the finding that parents notice abnormalities and problems with their child's development at a very early age, research shows that diagnoses are often made at an age beyond that recommended for the commencement of early intervention. This paper reviews the range of studies that have sought to elucidate the early features of autism in young, preschool children. Impairments in the capacity for reciprocal social interaction involving preverbal, verbal and non-verbal communication, and play and symbolic behaviour are the key features indicative of autism in infants and preschool children.