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Background: Parents with intellectual disability, like all other parents, are embedded in networks of capability-enhancing and/or capability-inhibiting relationships. This study investigated links between how parents with intellectual disability experienced their upbringing, continuity and discontinuity in familial relationships, and their assessments of their own parenting. Method: Structured interviews, incorporating scales and open-ended questions, were conducted with 91 parents in receipt of specialist services for people with intellectual disability, including 82 mothers and 9 fathers. Results: Most participants (81%) had experienced at least one form of childhood abuse or household adversity. Participants who recalled a more positive upbringing, including less adversity and more parental care, tended to have stronger support networks and reported greater parenting role satisfaction and emotional warmth in their interactions with their own children. Conclusion: The results highlight the need to understand parenting by people with intellectual disability in biographical and relational context.

Interventions for young children at risk for autism spectrum disorder (ASD) may improve key developmental skills and remediate early ASD signs. Parents of 3 children (19, 23, and 26 months old) showing possible early signs of ASD participated. The Parent Observation of Early Markers Scale (POEMS) identified specific child concerns confirmed in baseline observations. Multiple baseline designs across parent and child behaviors evaluated a parent-mediated behavioral intervention, called Parent Intervention for Children At-Risk for Autism (PICARA), to increase targeted developmental skills (e.g., responding to name, imitation, requesting). Parents received individual behavioral skills training in their home 1 hr per week over 12, 18, and 29 sessions, respectively, based on the number of child skills trained and child performance. All parent and child skills improved and were maintained at the 46-, 12-, and 6-week follow-up periods, respectively. With training, parents of young children at risk for ASD may be able to improve child skills deficits often seen in children with ASD.

Children with autism spectrum disorder (ASD) experience obsessions and compulsions similar to those specified in "DSM-5" for obsessive compulsive disorder yet little controlled research exists on treating these behaviours. Thirty-seven children (7-13 years old) were randomly assigned to a 9-week functional behavior-based cognitive behavior therapy (Fb-CBT) or Treatment As Usual. Independent assessors administered measures pre- and post-treatment and at 6-months. Two primary outcome measures indicated statistically significant differences between groups, with large corrected effect sizes (Hedge's g = 1.00 and 1.15, respectively). This is the first known RCT to exclusively treat obsessive compulsive behaviors (OCBs) in children and youth with high functioning (IQ [greater than or equal to] 70) ASD, and suggests that Fb-CBT treatment shows promise in decreasing these behaviors and improving quality of life. "Trial Registration" This trial was registered with ClinicalTrials.gov (ID: NCT03123146).

Children with autism spectrum disorder (ASD) experience obsessions and compulsions similar to those specified in DSM-5 for obsessive compulsive disorder yet little controlled research exists on treating these behaviours. Thirty-seven children (7-13 years old) were randomly assigned to a 9-week functional behavior-based cognitive behavior therapy (Fb-CBT) or Treatment As Usual. Independent assessors administered measures pre- and post-treatment and at 6-months. Two primary outcome measures indicated statistically significant differences between groups, with large corrected effect sizes (Hedge's g = 1.00 and 1.15, respectively). This is the first known RCT to exclusively treat obsessive compulsive behaviors (OCBs) in children and youth with high functioning (IQ [greater than or equal to] 70) ASD, and suggests that Fb-CBT treatment shows promise in decreasing these behaviors and improving quality of life. Trial Registration This trial was registered with ClinicalTrials.gov (ID: NCT03123146)., Author(s): Tricia Vause [sup.4] , Heather Jaksic [sup.2] [sup.5] , Nicole Neil [sup.2] [sup.6] , Jan C. Frijters [sup.1] , Grazyna Jackiewicz [sup.3] , Maurice Feldman [sup.4] Author Affiliations: (1) [...]

Background: Parents with intellectual and developmental disabilities (IDDs) are over-represented in child welfare cases. Although IQ "per se" is an invalid indicator of parenting abilities, this study examined the prevalence of judicial consideration of parental IQ test evidence in US appellate cases. Methods: The present authors conducted Boolean searches of Westlaw Corporation's case database since 1999. The present authors used a six-question checklist to survey the 42 most recent American appellate cases involving termination of parental rights (TPR) decisions that included evidence of parental intellectual and developmental disabilities based on IQ. Results: In 86% of cases, parental low IQ was presented as a barrier to parenting competence. Higher courts uphold TPR decision in 81% of cases involving parents with intellectual and developmental disabilities. Conclusions: Parental IQ scores are routinely relied upon to judge parenting capacity in custody cases where parents have intellectual and developmental disabilities. The present authors recommend more comprehensive assessments examining a broader range of contextual variable that may impact on parenting abilities.

Background: Persons with intellectual disabilities (ID) experience a wide range of health problems. Research is needed on teaching persons with intellectual disabilities about their health to promote self-advocacy. This study used a RCT to evaluate a health knowledge training program for adults with intellectual disabilities and verbal skills. Methods: Participants were randomly assigned to training (n = 12) or no training control (n = 10) groups. Topics included key body organs, systems, functions, health maintenance and illnesses. Participants played a game answering questions (e.g. "What does the heart do?"). Instruction involved visuals (e.g. PowerPoint slides), cueing, modelling and feedback. The control group received pre-, post- and follow-up tests as the training group. Results: The training group had significantly higher overall post-test and follow-up health knowledge test scores than the control group. Conclusions: Health knowledge training is one step in promoting health self-advocacy and better health in persons with intellectual disabilities.

Identification of early signs of Autism Spectrum Disorder (ASD) could lead to earlier diagnosis and intervention. This cross-sectional study used the Parent Observation of Early Markers Scale (POEMS, Feldman et al. in "J Autism Dev Disord" 42:13-12, 2012) to identify early signs of ASD in 69 ASD high-risk (older sibling diagnosed with ASD) and 69 sex and aged-matched ASD low-risk second-born or later infants (no family history of ASD) between 6 and 36 months of age. Family sociodemographic comparisons were also made between the risk groups. The high-risk children had significantly more elevated POEMS items than the low-risk children at 12, 18, 24, 30 and 36 months of age, even when the children subsequently diagnosed with ASD were removed from the analyses. Families of the high-risk group had older parents, lower family income and fewer mothers working out of the home than the low-risk group. These sociodemographic variables were not significantly correlated with POEMS scores. The results suggest that high-risk infants may show signs of the broader ASD phenotype as early as 12 months of age that may be unrelated to observed sociodemographic family differences.

This article reports on the initial stages of implementing an Australian-based education programme for parents with intellectual disabilities (IDs) in Sweden. The clinical utility of the programme, Parenting Young Children (PYC), in the new country context is explored through Swedish professionals' experiences in learning and using it. Study participants found PYC well suited for use in their working environment. Most of them reported the programme to have strengthened their work with parents. The programme was seen as benefiting both the study participants in their work with parents with IDs and these parents themselves, and its structure and content were found to be helpful in several ways. The checklists forming part of PYC were considered useful, but their purpose was sometimes misunderstood. The reported study helps to identify what is needed to improve the translation of the programme into the new country context, to promote appropriate and more effective use of programme materials.

This study investigated whether children with disabilities are excluded from mainstream child development research. Fifteen per cent of 533 articles from "Child Development" and "Developmental Psychology" (1996-2010) were randomly selected. The exclusion rate was 89.9% when no mention of participants with disabilities was interpreted as exclusion and 66.7% when only studies mentioning disabilities were surveyed; 74% of studies did not provide justification for exclusion. Most studies could have included children with disabilities. Inclusion could be increased by adopting universal design principles and accommodations so that more children with disabilities can gain equal access to research opportunities and the benefits that accrue.

Parents with cognitive impairments (CI) are overrepresented in child custody cases and their children are at risk for adverse outcomes. Ecological-transactional researchers propose that child outcomes are a function of the interaction of multiple distal, intermediate, and proximal risk and resilience factors. This study tested the fit of, and hypotheses from, an interactional model proposed by Feldman (2002) in a child protection sample of parents with CI ("Canadian Incidence Study of Reported Child Abuse and Neglect" [Trocme et al., 2003]). We found a range of child outcomes, with many children without problems. Different child outcomes were associated with different types of alleged abuse. Low parental social support and mental health issues predicted child functioning, with parental mental health mediating the relationship between social support and child outcome. Findings support an interactional view of families with parents with CI and suggest the need for comprehensive, ecologically-based family interventions to promote parent and child well-being. (Contains 3 figures, 6 tables, and 1 footnote.)

We developed and evaluated a new parent report instrument--Parent Observation of Early Markers Scale (POEMS)--to monitor the behavioral development of infants at risk for autism spectrum disorder (ASD) because they have older affected siblings. Parents of 108 at-risk infants (74 males, 34 females) completed the POEMS from child age 1-24 months. The POEMS had acceptable psychometric properties and promising predictive validity. Most concerning items were social and communication deficits, and intolerance to waiting. Results provide preliminary evidence that prospective parent report measures can help to detect early ASD symptoms in infants at biological risk. We invite researchers to join us in multi-center studies of the POEMS.

Objectives: The aim of this study was to determine the prevalence of parental cognitive impairment in cases opened for child maltreatment investigation in Canada, and to examine the relationship between parental cognitive impairment and maltreatment investigation outcomes including substantiation, case disposition and court application. Methods: The method was secondary analysis of the Canadian Incidence Study of Child Abuse and Neglect (CIS-2003) core-data, which is derived from a multi-stage stratified cluster sample of 11,562 child maltreatment investigations. Results: Parental cognitive impairment was noted in 10.1% of sampled cases that were opened for child maltreatment investigation in 2003, and in 27.3% of sampled cases that resulted in child welfare court application. Neglect was the most common cause of concern. With child and case characteristics held constant, parental cognitive impairment predicted investigation outcomes. The data further suggest that the relationship between parental cognitive impairment and investigation outcomes was partially mediated by perceived parent non-cooperation, mental health issues and low social support. Conclusions: The number of children who are living with a parent with cognitive impairment and who are referred for protective services is thought to be increasing. Building systems capacity to support parents with cognitive impairment and promote child wellbeing is therefore essential to containing the human and economic costs of maltreatment and out-of-home care. Practice implications: A broad-spectrum approach is needed to support parents with cognitive impairment and their children. Equipping services with the knowledge, skills, and mandate they need to deliver evidence-based parent training is vital. However, strategies are also needed to tackle discrimination, alleviate family poverty, strengthen the social ties of parents with cognitive impairment and in turn, improve the life chances of their children. (Contains 4 tables and 6 figures.)

Background: There is a general agreement in the literature that no systematic correlation exists between parental intellectual disability "per se" and parenting performance. Yet, a few studies in the field of parents and parenting with intellectual disability have explored other potential determinants of parenting and child outcomes. In this study, we examined the relationship between maternal social support, psychological well-being, parenting style, quality of the home environment and child problem behaviours. Materials and Methods: The sample included 32 mothers recruited through agencies that offer services exclusively to persons with intellectual disabilities and their families, and each mother's oldest child in the 2- to 13-year age range. In a series of semi-structured interviews, participating mothers completed a demographic and social support questionnaire, the SF-36 (health measure), the Parenting Stress Index, the HOME Inventory and the Child Behavior Checklist. Parenting style was assessed using the Canadian National Longitudinal Study on Children and Youth parenting questionnaire. Results: On an average, the participating mothers reported poorer physical and mental health compared with population norms. However, a few reported clinically significant levels of parenting stress. Overall, the target children did not have significant problem behaviours, but these were more common in older children. Main findings include a significant correlation between parenting stress, parenting style and perceived child problem behaviours. Conclusion: Global assessment, including health status (mental and physical) and level of parenting stress, as well as everyday life and parenting skills is recommended as basis for designing individualized supports and services for mothers with intellectual disabilities.

We tested the effectiveness of an interactive, video CD-ROM in teaching persons with intellectual disabilities (ID) about their human rights. Thirty-nine participants with ID were trained using both a classroom activity-based version of the training program and the interactive CD-ROM in a counterbalanced presentation. All individuals were pre- and post-tested on their awareness of their rights and strategies to remediate perceived rights restrictions. Exposure to both classroom activity-based and video-based scenarios resulted in significant improvements in participants' ability to identify human rights restrictions and strategies to address them. The computer-based video testing scenarios played a critical role in assessing the impact of human rights awareness training, and offered some preliminary support for the generalization of human rights awareness to nontrained scenarios. We discuss the development of the CD-ROM and the results of this study in relation to the existing literature on the use of computer-based instruction with individuals with ID. (Contains 1 figure.)

Children with developmental delay are at increased risk for behaviour problems, but little is known about risk and resilience factors. Previous research has established links between maternal sensitivity and behaviour problems in typically developing children, but no studies have examined maternal sensitivity in the development of behaviour problems in children with developmental delay. In this study, we coded videotaped interactions of 30 2-year-olds with developmental delay and their mothers using the maternal behaviour Q-sort and a child behaviour coding system. Mothers completed the child behaviour checklist when their children were 2 and 3 years old. Results revealed significant inverse relations between maternal sensitivity and concurrent and later externalizing problems, and significant positive relations between maternal sensitivity and concurrent observed appropriate behaviour (compliance and social engagement). This study informs developmental theory and identifies an important maternal variable that may reduce the risk of behaviour problems in children with developmental delay. (Contains 1 table.)

Identification of early signs of Autism Spectrum Disorder (ASD) could lead to earlier diagnosis and intervention. This cross-sectional study used the Parent Observation of Early Markers Scale (POEMS, Feldman et al. in J Autism Dev Disord 42:13-12, 2012 (See CR12)) to identify early signs of ASD in 69 ASD high-risk (older sibling diagnosed with ASD) and 69 sex and aged-matched ASD low-risk second-born or later infants (no family history of ASD) between 6 and 36 months of age. Family sociodemographic comparisons were also made between the risk groups. The high-risk children had significantly more elevated POEMS items than the low-risk children at 12, 18, 24, 30 and 36 months of age, even when the children subsequently diagnosed with ASD were removed from the analyses. Families of the high-risk group had older parents, lower family income and fewer mothers working out of the home than the low-risk group. These sociodemographic variables were not significantly correlated with POEMS scores. The results suggest that high-risk infants may show signs of the broader ASD phenotype as early as 12 months of age that may be unrelated to observed sociodemographic family differences., Author(s): Maurice A. Feldman[sup.1] , Amanda M. Hendry[sup.1] , Rebecca A. Ward[sup.1] , Melissa Hudson[sup.2] , Xudong Liu[sup.2] Author Affiliations: (1) Centre for Applied Disability Studies, Brock University, 500 Glenridge [...]

The global pandemic has highlighted the importance of telehealth to access behavioral interventions. Face‐to‐face parent training improves the development and behaviors of young children at risk for autism spectrum disorder (ASD). We evaluated a telehealth parent training intervention for a child at risk for ASD. Two parents identified possible early ASD symptoms in their 30‐month‐old son (lack of imitation, pointing, and vocal manding). Both parents simultaneously received telehealth behavioral skills training on the Parent Intervention for Children at Risk for Autism program for 1 hour per week over 29 weeks. Multiple baseline designs across parent and child behaviors showed that both parents improved their parent teaching fidelity above 80% and the child improved on all trained behaviors. This study expands the utility of telehealth behavioral parent training to young children at risk for ASD to mitigate early symptoms of ASD. [ABSTRACT FROM AUTHOR]

This study compared 21 children with pervasive developmental disorders (autism group) with 15 children with fragile X syndrome on the Childhood Autism Rating Scale and the Reiss Scales for Children's Dual Diagnosis. Seven of the fragile X children also scored in the autism range and were more impaired than the other fragile X children. (Contains references.) (Author/DB)

A study compared 27 participants with Angelman syndrome to clinical and community participants (n=948) with developmental disabilities of mixed etiology to determine whether Angelman syndrome is associated with a distinctive patterns of behavioral functioning. Those with Angelman syndrome had significantly lower scores on measures of irritability and lethargy. (Contains references.) (Author/CR)

Evaluates the effectiveness of self-learning pictorial-parenting manuals in teaching basic child-care skills to parents with intellectual disabilities who are being monitored by child protection agencies. The manuals alone increased child-care skills in nine out of 10 mother in the study and in 12 of 13 child-care skills. The remaining skill was acquired with the full training package. (Author/MKA)

A study evaluated the efficacy of self-instructional audiovisual child-care manuals using a multiple baseline design across 10 parents with intellectual disabilities. Self-instruction was effective with 9 parents and 11 out of 12 skills; skills reached percentage-correct levels seen in parents without intellectual disabilities. (Author/CR)

Describes an empirically validated assessment and child-care training model for parents with intellectual disabilities. The parent education approach is based on an interactional model of parenting and the view that many parenting problems are due to specific skill deficiencies that are remediable. A case study is presented. (Author/CR)

Comparison of 27 school-aged impoverished children of mothers with mild mental retardation and 25 children of mothers without mental retardation found the children whose mothers had mental retardation had lower IQs, lower academic achievement, and more behavior problems. Boys were affected more severely than girls. Not one child with a mother who had mental retardation was problem-free. (Author/DB)

This review examined parenting education interventions in 20 published studies, involving 190 parents with intellectual disabilities. The most common instructional approach was behavioral. Initial training, follow-up, and social validity results were encouraging, whereas generalization and child outcomes data were weak. Research needs are noted. (Author/JDD)