Pitfalls in the psychoeducational assessment of adolescents with learning and school adjustment problems

Over the past decade there has been a growing interest on the part of educators, medical specialists, mental health personnel, and the lay public in the diagnosis, evaluation, and remediation of specific learning disabilities in the school-age child. This paper attempts to show through case illustrations of five high school-age adolescents how parents can seek from clinical evaluators a diagnostic impression of primary learning disability for their nonlearning disabled children; how this otherwise legitimate diagnostic category can be inappropriately used in the service of denying the salient individual, emotional, and family system factors at work in the school-related difficulties; and how the label of learning disability can work as a formidable resistance on the part of the family when, following comprehensive, in-depth assessment, professional recommendations focus less on specific educational remediation and more on the need for individual or family psychotherapy. Suggestions are made for dealing with this clinical issue.     

Metachromatic leukodystrophy and nonverbal learning disability: neuropsychological and neuroradiological findings in heterozygous carriers.

Metachromatic leukodystrophy (MLD) is an autosomal recessive neurodegenerative disorder due to deficiency of the enzyme arylsulfatase A that leads to progressive, diffuse demyelination. The syndrome of nonverbal learning disability has been attributed to white matter abnormality and has been reported in children with this disorder and in some healthy family member carriers of gene. We examined the neuropsychologic profiles and MRIs of eight members of the family of a 7-year-old girl with this disease, all of whom were heterozygous carriers of the mutation and five of whom were also carriers of the MLD pseudodeficiency gene. All had low normal levels of arylsulfatase A, and seven of the eight had average or better profiles across all assessed neuropsychological domains. The patient's younger sister had a profile with features of the syndrome of nonverbal learning disability despite a normal MRI, whereas two members with minor white matter findings did not. This family does not provide evidence for the syndrome of nonverbal learning disability in heterozygous carriers of the gene for MLD, even when associated with the MLD pseudodeficiency gene.     

Metachromatic Leukodystrophy and Nonverbal Learning Disability: Neuropsychological and Neuroradiological Findings in Heterozygous Carriers

Metachromatic leukodystrophy (MLD) is an autosomal recessive neurodegenerative disorder due to deficiency of the enzyme arylsulfatase A that leads to progressive, diffuse demyelination. The syndrome of nonverbal learning disability has been attributed to white matter abnormality and has been reported in children with this disorder and in some healthy family member carriers of gene. We examined the neuropsychologic profiles and MRIs of eight members of the family of a 7-year-old girl with this disease, all of whom were heterozygous carriers of the mutation and five of whom were also carriers of the MLD pseudodeficiency gene. All had low normal levels of arylsulfatase A, and seven of the eight had average or better profiles across all assessed neuropsychological domains. The patient's younger sister had a profile with features of the syndrome of nonverbal learning disability despite a normal MRI, whereas two members with minor white matter findings did not. This family does not provide evidence for the syndrome of nonverbal learning disability in heterozygous carriers of the gene for MLD, even when associated with the MLD pseudodeficiency gene.     

Perceived Early Childhood Family Influence,Perceived Pain Self‐Efficacy,and Chronic Pain Disability: An Exploratory Study

The authors examined, with adult participants, the relationship between perceived early childhood family influence, pain self‐efficacy beliefs, and pain‐related disability. Perceived pain self‐efficacy explained 37% of the variance in chronic pain disability, but perceived early childhood family influence was not a statistically significant predictor of chronic pain disability.     

DEFINING DISABILITY FOR WOMEN AND THE PROBLEM OF UNPAID WORK

National policy and much of scholarly research on disability overlook the importance of unpaid family work and instead focus on disability in paid work, largely in male samples. Because of societal expectations about appropriate social roles for men and women, women tend to assume responsibility for unpaid work in the family and also tend to have paid work that is characterized by low pay and limited autonomy. This article discusses the political, theoretical, and methodological issues relating to defining and measuring paid and unpaid work disability for women and men within the context of these structural factors. The results of a study analyzing disability in both paid work and unpaid family work among a sample of 206 women with rheumatoid arthritis are presented. The study demonstrates the feasibility of measuring disability in family work and shows that women experience significant limitations in homemaker functioning as well as in paid work roles.     

THE LIFE CYCLE AND DISABILITY: EXPERIENCES OF DISCONTINUITY IN CHILD AND FAMILY DEVELOPMENT

Clinicians are often asked to work with parents who have one or more children with specific disabilities. Disability within the family can have a dramatic impact on family interactions and functioning across the course of the family life cycle. The authors review the potential role of disability within a family system and make specific suggestions for working with a family or the child with the disability.     

Caring for children with an intellectual disability: An exploratory qualitative study

This study explored family caregiver experiences of children with an intellectual disability in a rural South African day-care centre. The family caregivers (N = 15; mothers = 60%; age range = 35 to 68 years) completed in-depth interviews regarding their experiences providing care to children with intellectual disability. Data collection and analysis was done using phenomenological methods. The following themes emerged to characterise the family caregiver experiences: deeper understanding of intellectual disability; disability disclosure conditions; and social and economic support needs. Family support emerged as an important factor in the relationship between caregivers’ psychological stress and well-being.     

Textual Abuse: Faulkner’s Benjy

William Faulkner's The Sound and the Fury has become a classic in literary history. Since its publication in 1929, it has sustained critical interest worldwide. Over time, analyses of this work have reflected shifting cultural perspectives of the inscribed human dynamics such as gender, race and sexuality. This paper contends that a similar critical development cannot be detected around the reception of the character of the "idiot," Benjy. Faulknerian scholarship, regardless of its place in time or trend, persists in conflating the dehumanized images of Benjy with the lived experience of disability, thus perpetuating oppressive disability prejudice and limiting the richness of the character's metaphoric potential. Acknowledging this critical lacuna, historicizing and theorizing Benjy's character from a disability perspective could lead to a deeper understanding of human experience.     

Medical family therapy: an emerging arena for family therapy

This paper describes an important recent development in American family therapy. Medical family therapy uses a biopsychosocial systems model to work with families who have a member with a chronic illness or disability. The authors maintain that family therapy has tended to embrace the mind–body split and to view itself too narrowly as a mental health specialty. Medical family therapists work collaboratively with physicians and other health professionals to help families achieve a sense of agency and communion in facing some of the greatest challenges that life brings.     

Group Therapy with Individuals and Families Coping with Illness or Disability in Israel

This paper illustrates a group intervention with individuals and family caregivers coping with illness/disability, and focuses on the relationship between the process of group development and the process of coping with the illness/disability. People experiencing illness/disability cope with a great deal of pressure and stress that stem from the illness's biopsychosocial demands. A group can provide encouragement and support and reduce helplessness, isolation, and despair through cooperation and use of mutual resources. The design of the intervention was based on our clinical experience with numerous groups for ill/disabled individuals or their family. The process is described and analyzed using examples from three documented groups, and is presented in terms of four variables: group process, group atmosphere, group content, and group intervention.     

学习不良儿童家庭资源的元分析

对过去20年关于学习不良儿童家庭资源的研究结果进行的元分析显示,儿童各种家庭资源的效应值变异程度不大。总体来说,学习不良儿童和一般儿童的家庭资源差异显著。一般儿童的父母文化程度和教养方式优于学习不良儿童的父母文化程度和教养方式。但是,两类儿童的父母期望没有显著差异。     

Mother Positivity and Family Adjustment in Households with Children with a Serious Disability

Only limited attention has been given to parent coping resources in the positive adjustment of families of children with a disability. This study is the first to explore maternal positivity as a psychological coping resource related to family adjustment in these families. Consistent with broaden-and-build theory and prior positivity research, positivity was operationalized through a ratio of positive to negative affect scores. We employed longitudinal tracking over a 1 year interval. Children’s diagnostic categories included developmental conditions or impairments, mental health disorders, complex health conditions, physical/motor conditions or impairments, sensory impairments, and provisionally diagnosed conditions or impairments. We used a computer assisted telephone survey to gather psychological, family, and demographic information from 152 mothers in Alberta, Canada. Hierarchical regression analysis indicated mothers’ level of positivity and age, when controlled for family adjustment at Time 1, accounted for 46% of the variance in family adjustment at Time 2. That is, older mothers with higher positivity scores were found to live in households with higher levels of family adjustment after 1 year. These findings provide promising support for broaden-and-build theory, which posits that positive experienced emotions can offset and diminish the negative health and relationship impacts of chronic stress. Study findings support the salience of mothers’ positivity as a psychological coping resource, which is related to enhanced family adjustment in situations of childhood disability.     

The Family Environment in Chronic Pain Patients: Comparison to Controls and Relationship to Patient Functioning

Operant and cognitive-behavioral models of chronic pain have called attention to the importance of examining the marital and family environments of chronic pain patients. In this study, 50 chronic pain patients and their spouses and 33 control participants and their spouses completed measures of the family environment, marital satisfaction, and patient physical and psychological functioning. Patients' overt pain behaviors were coded from videotapes of patient–spouse interactions. Compared to controls, pain patients and their spouses rated their family environments as lower in cohesion and higher in control, and there was a trend for spouses to report more marital dissatisfaction. Chronic pain patient depression was associated negatively with patient-rated family cohesion and expressiveness and spouse-rated family organization and positively with patient-rated family conflict. Overt patient pain behaviors and spouse-rated patient disability were related negatively to spouse-rated family cohesion. Spouse marital satisfaction was associated negatively with patient depression and with spouse ratings of patient disability and pain behaviors.     

A Qualitative Investigation of Somali Immigrant Perceptions of Disability: Implications for Genetic Counseling

This study examined the potential utility of genetic counseling services for Somali immigrants by investigating their perceptions of disability. Five Somali women participated in structured interviews that assessed their perceptions of the nature, causes, and impact of disability, and care for persons with disabilities. Using a Heideggerian Hermeneutics qualitative method of analysis, six major themes emerged: (1) disability refers to both physical and mental conditions, with mental disability generally thought of first and as more severe; (2) in Somalia, the family cares for disabled family members, treating them as if they were normal (3) there are major cultural differences between Somalia and the United States in how persons with disabilities are treated; (4) caring for a person with a disability is stressful for the family; (5) Allah determines whether or not a child will be disabled, and this cannot be predicted or altered; and (6) family is the primary life focus, and therefore, risk of disability does not affect reproductive decisions. These themes suggest that traditional genetic counseling may have limited utility for Somali immigrants. We recommend several modifications to traditional genetic counseling for Somali patients that also may be useful for populations that have similar beliefs.     

Maternal depression and developmental disability: research critique

Maternal depression in families having a child with a disability has been the subject of considerable research over the past 25 years. This review was designed to describe the literature on maternal depression, critique its research methodology, identify consensus findings across studies, and make recommendations for future research. A particular emphasis is on the distinction between exhibiting depressive symptoms and meeting clinical criteria for a depressive disorder, how or whether research studies made this distinction, and implications for our understanding of maternal adaptation to disability in a family member. Of the 42 articles reviewed, only eight were clinically diagnosed depression; most of them used a scale rating depressive symptoms. Across the studies, mothers of children with disabilities generally exhibited a higher than average rate of depressive symptoms and are more at risk for clinical depression, but the incidence may be lower than reported in previous literature. Child behavior problems, maternal stress, coping style, and support were consistently associated with depressive symptoms. We conclude that we know relatively little about clinical depression in mothers of children with disabilities. The distinction between clinical depression and depressive symptoms may be important in conceptualizing how a child with a disability can influence family members and the nature of support that may need to be provided. Future research should incorporate gold standard diagnostic tools and assess history, severity, and type of depression. Research is also needed to study treatments to reduce the occurrence of both depressive symptoms and clinical depression.     

Exploring the Use of Family Therapy with Adults with a Learning Disability

Clients with a learning disability have received little attention so far from psychotherapeutic services. Systems thinking seems to have obvious potential for this group, given the stresses which such a disability puts on the client and his family and the variety of different organizations with which they become involved. This paper describes the use of family therapy within a clinic setting and considers similarities to and differences from general family therapy practice. Ways of overcoming communication difficulties are highlighted, as is the need to redress the power imbalance within the therapeutic situation.     

One articulation of the structural family therapy model: a biobehavioral family model of chronic illness in children

This article presents the Biobehavioral Family Model (BBFM), which, as a general systems model, has the advantage of being conceptually neutral with respect to health versus pathology, and promotes integration of individual, family and social levels of theory. The BBFM provides a heuristic theory of pathways by which family patterns of interaction and individual family member physiological function influence one another. The BBFM also can be extrapolated to the clinical domain, providing a developmental biopsychosocial approach to assessment and intervention in childhood chronic illness or disability. A case illustration demonstrates clinical application.     

Models of family functioning and their contribution to patient outcomes in chronic pain

This paper analyzes the relationship between family functioning and chronic pain, and evaluates a model which integrates the role of family variables with the pain-coping process in patients with rheumatoid arthritis (RA) and fibromyalgia (FM). Family variables, assessed by subscales of the Family Environment Scale (FES), and different components of the pain-coping process varied significantly in their contribution to pain, psychological functioning, and disability in these two chronic pain disorders. High system maintenance control and low independence contributed significantly to pain in RA and FM, respectively, while low family cohesiveness contributed to psychological disturbances in FM subjects. Lack of promotion of activity and recreation in the family was associated with greater disability in both groups. In addition to family variables, helplessness proved to be a potent predictor of pain and psychological functioning in both groups, and disability in FM subjects. Pain-coping had its predominant influence on pain. As an exploratory test of the model, the data confirm the importance of examining this integrated framework in longitudinal, prospective studies, and its potential utility in clinical assessment and intervention.This research was supported by a Multipurpose Arthritis and Musculoskeletal Diseases Center grant AR40770 from the National Institute of Arthritis and Musculoskeletal Diseases at the University of California, San Diego. Portions of this paper were presented at the convention of the American Psychological Association, August 1992, in Washington, DC, and at the meeting of the Society of Behavioral Medicine, March 1993, in San Francisco.The authors gratefully acknowledge Teresa A. Krall, M.A., and Karen Schoenfeld-Smith, M.A. for their valuable assistance in statistical analysis for this article.