Maurice A. Feldman

Behavioral Relationship between Autism and Fragile X Syndrome.

Previous researchers have reported autistic features in children with fragile X syndrome. We compared 21 children with pervasive developmental disorders (autism group) to 15 with fragile X syndrome on the Childhood Autism Rating Scale and the Reiss Scales for Childrens Dual Diagnosis. The 7 children (47%) with fragile X who scored above the Childhood Autism Rating Scale cut-off (fragile X-autism group) were more impaired than the remaining children (fragile X-no autism) on Childhood Autism Rating Scale subscales related to emotion, visual and listening responses, and communication. The autism groups Reiss scores were higher than fragile X-no autism group, but not fragile X-autism group. Although the Childhood Autism Rating Scale identified almost 50% of children with fragile X as having autism, qualitative differences may exist in specific autistic-like behaviors between children with autism and children with fragile X.

Behavior Problems in Young Children With or At Risk for Developmental Delay

We examined the prevalence of behavior problems and their relationship to child, parent, and family factors in 76 children with or at risk for developmental delay. Parents reported that 42% of the children had behavior problems. Child Behavior Checklist (CBC) scores revealed that 25% of the sample scored above the borderline cutoff. Although the total, externalizing, and internalizing mean CBC scores did not differ from the normative group (same-aged peers without developmental delay), each of the syndrome subscales was significantly higher in the study group. The Reiss Scales for Childrens Dual Diagnosis revealed that, as compared to older children (≥4 years) with developmental delay, the study sample scored significantly lower on the total score and 8 of the 10 subscales. Increased CBC total scores were significantly related to dependency and management of the child, birth weight, gestational length, paternal illness, maternal depression, perceived personal burden of care, maternal escape-avoidance coping strategy, family disharmony, and financial stress. CBC total scores were significantly negatively correlated with being of a multiple birth, paternal education, maternal employment, two-parent family, family social support, and family income. Multiple regression analyses revealed that an empirically-derived combination of child, parent, and family variables accounted for 31% of the variance in CBC total scores. Our findings suggest that 2-year old children with or at-risk for developmental delay may already be showing signs of increased risk of behavior problems relative to peers without developmental delay. We identified several child, parent, and family variables that may help to pinpoint children at increased riskxs for psychopathology.

Teaching child-care and safety skills to parents with intellectual disabilities through self-learning

Children of parents with intellectual disabilities are at risk for neglectful care due to parenting skill deficiencies. In this study, the efficacy of self-instructional audiovisual child-care manuals was evaluated using a multiple baseline design across 10 parents. Self-instruction was effective with 9 out of 10 parents and 11 of 12 skills; skills reached percentage correct levels seen in parents without intellectual disabilities. Increased skills maintained up to 6.5 months after training, during which time observations of the trained skills were reduced. Only one parent required full training. Consumer satisfaction ratings were uniformly high. Overall, the results of this study indicate that many parents with intellectual disabilities may improve their parenting skills with low cost, low tech, self-instructional materials.

Stress in mothers with intellectual disabilities.

Both low parental IQ and stress have been shown to be associated with parenting difficulties and adverse child outcomes. We examined stress in parents with low IQ as a potential contributor to their documented parenting problems. Eighty-two mothers with intellectual disabilities (IQ < 80; labelled as having mental retardation) were given the Parenting Stress Index and they were found to be enduring very high levels of overall stress (95th percentile), stress related to child characteristics (95th percentile), and stress related to other life experiences (90th percentile) as compared to the normative test group. We divided the 82 mothers with intellectual disabilities into three groups depending on the age of their children. The mothers with school-age children reported significantly higher stress than parents of infant/toddler and preschool children. A hierarchical regression analysis revealed that child age and living in a crowded environment were significant predictors of parenting stress. The results confirm that mothers with intellectual disabilities experience extreme stress that, together with other factors, may hinder adequate parenting.

Parental cognitive impairment and child maltreatment in Canada

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.

Distinctive Pattern of Behavioral Functioning in Angelman Syndrome

Angelman syndrome is a neurogenetic disorder that is characterized by impairments in neurological, motor, and intellectual functioning. This study compared 27 participants with Angelman syndrome to clinical and community participants with developmental disabilities of mixed etiology to determine whether Angelman syndrome is associated with a distinctive pattern of behavioral functioning. The groups with and without Angelman syndrome were matched on chronological age, gender, and level of intellectual functioning. The dependent measure was parent ratings of maladaptive behavior using the Aberrant Behavior Checklist. The Angelman syndrome group had significantly lower scores on measures of irritability and lethargy. Results contribute to the delineation of a behavior phenotype for the syndrome.

Where are persons with intellectual disabilities in medical research? A survey of published clinical trials

BACKGROUND Persons with intellectual disabilities (ID) are exposed to the same medical interventions as everyone else. Given the unique health profiles of many persons with ID, it cannot be assumed that they will react to medical treatments the same as persons without ID. It is not clear if medical clinical trials routinely include persons with ID. The purpose of this research survey was to examine the inclusion of persons with ID in medical research trials, and to determine whether accommodations and/or study modifications could have been made to promote greater inclusion in medical research. METHOD Three hundred randomised control and clinical trials published between 2007 and 2011 in the six highest impact medical journals were randomly selected. Each study was reviewed for inclusion of persons with ID, and possible accommodations that could have been put in place without compromising research integrity. Corresponding authors received a follow-up survey to determine whether persons with ID were included, but were not mentioned in the article. RESULTS Only 6 (2%) of 300 randomly chosen studies clearly included persons with ID. Over 90% of studies were designed in ways that would automatically exclude persons with ID from participating. The author survey revealed three additional studies including persons with ID. Most persons with ID could have participated in at least 70% of the studies with simple accommodations and/or minor procedural modifications. DISCUSSION The findings highlight the exclusion of persons with ID in medical research. Efforts are needed to increase inclusion through research policy initiatives and education.

Child Maltreatment Investigations Involving Parents With Cognitive Impairments in Canada

The authors examined decision making and service referral in child maltreatment investigations involving children of parents with cognitive impairments using the Canadian Incidence Study of Reported Child Abuse and Neglect (CIS-2003) core-data. The CIS-2003 includes process and outcome data on a total of 1,243 child investigations (n = 1,170 weighted) in which parental cognitive impairment was noted. Employing binary logistic regression analyses, the authors found that perceived parent noncooperation was the most potent predictor of court application. Alternative dispute resolution was rarely utilized. The findings from this study highlight the need for development and utilization of alternative dispute resolution strategies, worker training, dissemination of evidence-based parent training programs, and implementation of strategies to alleviate poverty and strengthen the social relationships of parents with cognitive impairments and promote a healthy start to life for their children.

Using Self-Instructional Pictorial Manuals to Teach Child-Care Skills to Mothers with Intellectual Disabilities

Children of parents with intellectual disabilities (i.e., IQs less than 80, labeled as having mental retardation) are at risk for neglect due to inadequate parenting abilities. Previous studies have shown that these parents are responsive to parent-training packages consisting of instructions, pictorial cues, modeling, feedback, and reinforcement. This study evaluated the effectiveness of self-learning pictorial-parenting manuals in teaching basic child-care skills (diapering, treating diaper rash, bathing, safety) to parents with intellectual disabilities who are monitored by child protection agencies. The manuals alone increased child-care skills (to levels seen in parents without disabilities) in 9 out of the 10 mothers in the study and in 12 of 13 child-care skills. The remaining skill was acquired with the full training package. Follow-up indicated that the acquired skills were maintained for up to 3 years. Mean correct performance with the manual was positively correlated with the trainer”s rating of the mother’s reading level and acceptance of the manual when the mother was first given the manual. Consumer satisfaction ratings of the manuals were high. These results indicate that many parents with intellectual disabilities may improve their child-care skills without intensive training and that self-instruction may be an easily disseminable and cost-effectiveway of reducing the risk of child neglect due to parenting skill deficiencies.

Parental Cognitive Impairment, Mental Health, and Child Outcomes in a Child Protection Population

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 [Trocmé 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.