Characteristics of adults with autism spectrum disorder who use residential services and supports through adult developmental disability services in the United States

BackgroundMany children and adults with Autism Spectrum Disorder (ASD) need services and support across their lifespans. Currently many residential and community living supports are delivered through state intellectual and developmental disabilities (IDD) service systems.MethodA random sample of 11,947 individual users of adult IDD services from 25 states that included 1,459 individuals with an autism diagnosis was analyzed for this study looking at demographic characteristics and living arrangements. Comparisons were made between adults with and without ASD who receive services through the IDD service system.ResultsOverall, individuals with an ASD diagnosis were younger on average, had a higher percentage of males, and had higher percentages of the No Intellectual Disabilities (ID) and Severe ID categories compared to individuals without an ASD diagnosis. There was a significant association between the type of living arrangement and ASD status with a higher percentage of participants with ASD living in a family member’s home, but a lower percentage of people with ASD living in agency apartments, in their own home or an “other” living arrangement. However, with age, gender, and level of ID and challenging behavior taken into account, people with ASD had 29% higher odds of living in a family member’s home but 42% lower odds of living in their own home when compared to people with other developmental disabilities who received residential services through state IDD service systems.ConclusionsThere are key differences in access and utilization of residential services between people with ASD and people without ASD. While state developmental disabilities systems are serving individuals with ASD there are potential influences of state policies regarding ASD eligibility for various residential services. Implications for future research are discussed.     

Onset of maternal psychiatric disorders after the birth of a child with intellectual disability: A retrospective cohort study

Mothers of a child with intellectual disability (ID) have more psychiatric disorders after the birth of their child than other mothers. However, it is unclear if this is because they have more psychiatric disorders before the birth or if the increase is related to the burden of caring for the child. We aimed to calculate the rate of new psychiatric disorders in mothers after the birth of their eldest child with ID born between 1983 and 2005 and to compare these with rates in women with a child with no ID or autism spectrum disorder (ASD) born during the same period. By linking data from Western Australian population-based registries, we selected women with no psychiatric history who survived the birth of their live-born child (N = 277,559) and compared rates of psychiatric disorders for women with a child with ID and women without a child with or ASD. Negative binomial regression with STATA 12 was used for all analyses. Mothers of children with mild–moderate ID of unknown cause had around two to three and a half times the rate of psychiatric disorders of mothers of children without ID or ASD. Mothers of children with Down syndrome and no pre-existing psychiatric disorder showed resilience and had no impairments in their mental health. Interventions and services are needed for mothers of other children with ID to improve their mental health. Further research is implicated to explore the mental health of mothers of children with ID and a pre-existing psychiatric disorder.     

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.     

Behaviour/mental health problems in young adults with intellectual disability: the impact on families

Background The present authors studied the impact of dual diagnosis [i.e. intellectual disability (ID) and mental disorder] in young adults on their mothers’ perceived levels of stress and decisions about placement. Methods The mothers of 103 young adults with severe ID were interviewed using a 2–3‐h in‐depth protocol of measures designed to assess their child’s adaptive functioning, maladaptive behaviour, mental health problems and negative impact on the family, as well as their own thoughts on out‐of‐home placement. The Scales of Independent Behavior – Revised Problem Behavior Scale assessed problem behaviours and the Reiss Screen assessed mental disorder. Results These measures were highly correlated (r = 0.64), but tapped some different domains of maladaptive behaviour and proved to be most predictive when employed together. Behaviour and/or mental health (B/MH) problems significantly predicted the mothers’ perceived negative impact of the young adult on the family, even after controlling for other young adult characteristics. These problems also predicted the family’s steps toward seeking out‐of‐home placement, as did better young adult health and the mother’s higher educational attainment; stress did not predict additional variance in placement once these variables were accounted for. Conclusions The discussion focuses on the implications for service provision to families of young adults with B/MH problems.     

Occurrence of mental health problems in Swedish samples of adults with intellectual disabilities

Abstract. Objective: The aim of this study was to investigate the occurrence of mental health problems in adults with intellectual disabilities (ID) and the number of adults with ID receiving care at general mental health clinics. Method: The Reiss Screen for Maladaptive Behaviour and the Psychopathology Inventory for Mentally Retarded Adults were used to investigate mental health problems in samples from two Swedish counties. Adults with ID receiving psychiatric care at general mental health clinics were investigated via the mental health services register in one county. Results: The overall occurrence of mental health problems in adults with ID ranged from 34 % to 64%. The most common mental health problems were aggressive, self-injurious behaviours, signs of depression, anxiety or adjustment problems. The occurrence of adults with ID among patients receiving out- or in-patient psychiatric care was approximately 1%. Between 70 % and 90% of these persons had a mild level of ID. Conclusion: The overall occurrence of mental health problems was similar to reported overall figures in comparable studies conducted in the US, UK and Denmark. The number of adults with ID registered for out- or in-patient psychiatric care was low compared with the occurrence of mental health problems based on the screening results.     

Risk factors for psychiatric disturbance in children with intellectual disability

Background Children with intellectual disability (ID) have a higher risk for psychiatric disturbance than their peers with normal intelligence, but research data on risk factors are insufficient and partially conflicting. Method The subjects comprised 75 children with ID aged 6–13 years. Data were obtained from case files and the following four questionnaires completed by their parents or other carers: Developmental Behaviour Checklist, American Association of Mental Deficiency (AAMD) Adaptive Behavior Scale, a questionnaire on additional disabilities, and a questionnaire on family characteristics and child development. Results The risk of psychopathology was most significantly increased by moderate ID, limitations in adaptive behaviour, impaired language development, poor socialization, living with one biological parent, and low socio‐economic status of the family. Conclusions The risk of psychopathology in children with ID is increased by factors related to family characteristics and child development. Identifying these factors will help diagnose and possibly prevent psychiatric disorders in these children.     

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.     

Illuminating patients with children up to 18 years of age – A 1-day-inventory study in a psychiatric service

This study reports the possibility of accomplishing a survey in an ordinary psychiatric service organization to identify the children and the adolescents in families with a parent with mental illness and to highlight the number of patients in psychiatric treatment with little or virtually no contact with their minor children. The prevalence of patients being parents to minor children was 36% in the total sample consisting of 137 patients, from both inpatient and outpatient services, participating in the survey. Three of four patients were living together with the children. A higher proportion of patients in the outpatient unit were parents to minor children, and more often lived together with them. There were no differences in prevalence of patients with minor children according to sex or diagnostic subgroup. However, female patients more often and patients with a psychosis diagnosis more seldom had the custody of the children. A majority of the patients had communicated with their children about their own situation, showing that psychiatric patients care a lot about the situation of their children, although, according to the patients, the psychiatric services only take an active part in this information in a minority of the cases. The study may be found to be a basis for inspiring structured interventions and treatments programmes, including the minor children of the adult patients seeking psychiatric treatment. Prevention of mental disorders in the oncoming generation is an important issue for all psychiatric professionals, especially in co-operation between adult and child/adolescent psychiatric services.     

Illuminating patients with children up to 18 years of age--a 1-day-inventory study in a psychiatric service

This study reports the possibility of accomplishing a survey in an ordinary psychiatric service organization to identify the children and the adolescents in families with a parent with mental illness and to highlight the number of patients in psychiatric treatment with little or virtually no contact with their minor children. The prevalence of patients being parents to minor children was 36% in the total sample consisting of 137 patients, from both inpatient and outpatient services, participating in the survey. Three of four patients were living together with the children. A higher proportion of patients in the outpatient unit were parents to minor children, and more often lived together with them. There were no differences in prevalence of patients with minor children according to sex or diagnostic subgroup. However, female patients more often and patients with a psychosis diagnosis more seldom had the custody of the children. A majority of the patients had communicated with their children about their own situation, showing that psychiatric patients care a lot about the situation of their children, although, according to the patients, the psychiatric services only take an active part in this information in a minority of the cases. The study may be found to be a basis for inspiring structured interventions and treatments programmes, including the minor children of the adult patients seeking psychiatric treatment. Prevention of mental disorders in the oncoming generation is an important issue for all psychiatric professionals, especially in co-operation between adult and child/adolescent psychiatric services.     

Service Use and Perceived Service Effectiveness for People with Intellectual Disability and Dual Diagnosis in Israel

Introduction: Studies regarding the use of support services for persons with a dual diagnosis of intellectual disability and psychopathology are scarce; even fewer have focused on children and young adults. The aim of the present study, conducted in Israel, was to compare the use of support services and their perceived effectiveness by families of children and young adults with intellectual disability (ID) and with dual diagnosis. Methods: Data were collected from 195 family (parental) caregivers of individuals with ID or dual diagnosis, aged 10–30. Using a structured questionnaire, family caregivers reported on the use of support services and on their perceived effectiveness. Results: Findings showed that in addition to the obvious mental health services, caregivers of individuals with ID and dual diagnosis report using a range of services and resources. Caregivers of persons diagnosed only with ID perceived some of the mental health services as being more effective than did caregivers of individuals with dual diagnosis. Conclusion: We advocate for enhanced training for professionals working with individuals with dual diagnosis within all services. Furthermore, parents need to be supported in their search for services for their child and in dealing with complex situations. In addition, more research is needed to identify why individuals with dual diagnosis may not benefit from current mental health services and, in line with this, develop more effective services. Finally, we advocate for the establishment of a one-stop shop that can provide for the comprehensive needs of these individuals within one center.