Estee Klar fonds, 2005-2014

Estee Klar is the founder and executive director of The Autism Acceptance Project, an organization that strives to support people with autism by promoting acceptance and inclusion of these individuals. She is the mother of a son, Adam, who has autism, and writes about her experiences with him on her blog, found at http://www.esteeklar.com. She also writes about issues concerning autism in the area of human rights, law, and social justice, and has contributed to several books, including The Thinking Person's Guide to Autism, Between Interruptions: Thirty Women Tell the Truth about Motherhood, and Concepts of Normality: The Autistic and Typical Spectrum. Currently, she is a Ph.D. candidate at York University, Critical Disability Studies, as well as a writer and freelance curator of art.

Exploring the Therapeutic Alliance in Cognitive-Behavior Therapy with Children with Autism Spectrum Disorder: An Interpretative Phenomenological Approach

Abstract The therapeutic alliance (TA) is the most studied process of adult psychotherapeutic change (Zack et al., 2007) and has been found to have a moderate but robust relationship with therapeutic outcome regardless of treatment modality (Horvath, 2001). The TA is loosely described as the extent to which the therapist and the participant connect emotionally and work together towards goals. Conceptualizations of the TA with children have relied on adult models, even though it is widely acknowledged that the pediatric population will rarely willingly commit to therapy, nor readily admit to any challenges that they may be experiencing (Keeley, Geffken, McNamara & Storch, 2011). For children with Autism Spectrum Disorder (ASD) the therapeutic alliance may require an even greater retheorizing considering the communicative and social difficulties of this particular population. Despite this need, research on children with ASD and the therapeutic TA is almost non-existent. In this qualitative study, transcripts from semi-structured interviews with mothers of children with ASD were analyzed using Interpretative Phenomenological Analysis (IPA). IPA closely examines how individual people make sense of their life experiences using a theme-by-theme approach. The three interviewees were mothers whose children were participants in a nine-week Cognitive Behaviour Therapy (CBT) group for obsessive-compulsive behaviours (OCB). A total of four superordinate themes were identified: (i) Centralization and disremembering the TA, (ii) Qualities of the therapist, (iii) TA and the importance of time, and (iv) Signs of a healthy TA. The mothers’ perspectives on the TA suggest that, for them and their children, a strong TA was a required component of the therapy. Implications for clinicians and researchers are discussed.

Examining Predictors of Quality of Life of Adults with Intellectual Disabilities After Deinstitutionalization

This study examined if a person’s quality of life could be predicted by six relevant factors in a sample of 114 individuals with intellectual disability who had moved from institutional settings to community living settings within Ontario. Further, two aspects of self-efficacy were tested to see if they moderated the relationship between the possible predictors and the quality of life indicator. The initial multiple regression model accounted for a very small amount of the variance in the outcome (r2 = .08). The second analysis included decision-making as a predictor (r2 = .35) but did not find it to be moderator. The third analysis used opportunities for change as a predictor (r2 = .28), and as a moderator with two significant interaction terms, health and years in an institutional setting (r2 = .35). These findings support the often-theorized influence of self-efficacy on quality of life for individuals with intellectual disability.

A Comparative Analysis of Community-Based Service Providers for "Extreme" Case ASD: Exploring Activity Program Options

The purpose of my research was to examine how community-based organizations in the Niagara region provide programs for children with Autism Spectrum Disorder (ASD), who are considered to represent “extreme” or “severe” cases. A qualitative, comparative case study was conducted that focused on three organizations who provide summer recreation and activity programs, in order to examine the issues these organizations face when determining program structure and staff training; and to understand what the threshold for physical activity is in this type of setting, and how the unique needs surrounding these “severe” cases are met while attending the program. Purposeful sampling was employed to select a supervisor and senior staff member from each organization to discuss the training process, program development and implementation, and the resources and strategies used within their organization’s community-based program. A confirming comparative analysis was comparative analysis of a parents survey with six mothers whose children are considered “severe” indicated that camp staffs’ expectations are unrealistic where as the parents and supervisors have more realistic expectations within the “real world” of camp. There is no definition of “severe” or “extreme” and therefore severity is dependent upon the context.

Creating and Enabling a Sustainable Livelihood for Persons with Intellectual Disabilities: A Comparative Case Study of Ghana and Canada.

Abstract Despite the plethora of published studies on rights, including employment rights, for persons with intellectual disabilities (Hatton, 2002; Tarulli, et al., 2004; Ward & Stewart, 2008), relatively few have discussed their applicability to individuals with intellectual disabilities to facilitate their full involvement in socio-economic development. This study explored the mechanisms facilitating and inhibiting the full participation of persons with intellectual disabilities in the area of employment through a comparative case analysis of policies and practices in Ontario, Canada (a developed country) and in Ghana (a developing country) both of which are signatories to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The study employed targeted recruitment based on the nature of the research which is a combination of policy and practice investigation.

Using HeadSprout Early Reading with a child with Autism Spectrum Disorder: An examination of phonological awareness, participant engagement, and participant enjoyment

This study examined the effectiveness of a 9-week reading program in improving the phonological awareness (PA) skills of a seven year old boy with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), and Oppositional Defiant Disorder (ODD). The study’s secondary goal was to describe how the participant engaged with and enjoyed the HeadSprout computer program. The participant attended a one hour reading program incorporating 30 minutes of HeadSprout Early Reading three days a week for 9 weeks. Results demonstrated that the participant’s PA scores increased from the 16th percentile at pre-test to the 35th percentile post program. Four of five measures of PA increased, segmenting nonwords decreased to the 2nd percentile post program. Momentary time sampling procedures revealed the participant was engaged with the computer program 94.5% of the time. Perceived ratings of enjoyment indicated the participant enjoyed using the program. Specific components of the program which may have influenced participant enjoyment and engagement are discussed. Study limitations and implications of these findings are discussed in reference to future research.

Parent Prediction of Autism Spectrum Disorder in Infants At Risk: A Follow-up Study

Later-born siblings of children with autism spectrum disorder (ASD) are considered at biological risk for ASD and the broader autism phenotype. Early screening may detect early signs of ASD and facilitate intervention as soon as possible. This follow-up study revisits and re-examines a second-degree autism screener for children at biological risk of autism, the Parent Observation Early Markers Scale (POEMS, Feldman et al., 2012). Using available follow-up information, 110 children (the original 108 infants plus 2 infants recruited after the completion of the original study) were divided into three groups: diagnosed group (n = 13), lost diagnosis group (n = 5), and undiagnosed group (n = 92). The POEMS continued to show acceptable predictive validity. The POEMS total scores and mean number of elevated items were significantly higher in the diagnosed group than the undiagnosed group. The lost diagnosis group did not differ from the undiagnosed group on POEMS total scores and elevated items at any age, but the lost diagnosis group had significantly lower total scores and number of elevated items than the diagnosed group starting at 18 months. Both ASD core and subsidiary behaviours differentiated the diagnosed and undiagnosed groups from 9−36 months of age. Using 70 as a cut-off score, sensitivity, specificity, and positive predictive value (PPV) were .69, .84, and .38, respectively. The study provides further evidence that the POEMS may serve as a low-cost early screener for ASD in at risk children and pinpoint specific developmental and behavioural problems that may be amenable to very early intervention.

Evaluating Knowledge of a Function-based Cognitive-Behavioural Treatment for Obsessive Compulsive Behaviour in Autism Spectrum Disorder

Children with Autism Spectrum Disorder (ASD) have restricted and repetitive behaviours (RRBs) which may be similar to obsessions and compulsions in Obsessive Compulsive Disorder (OCD). These behaviours can be intrusive and interfere in the lives of the child and their family. Preliminary studies have shown success in using adapted Cognitive Behavioural Therapy (CBT) to treat these behaviors in children with high functioning ASD. Using a hypothetical vignette, this thesis attempted to examine procedural knowledge that the children and their parents gained while participating in a CBT treatment that was evaluated in a Randomized Controlled Trial. For both parents and children, there was a significant increase in number of strategies generated from pre to post-treatment. Further, children in the experimental group generated significantly more strategies than the treatment as usual (TAU) group post-intervention. There was no significant correlation between number of strategies generated and the child’s treatment success, age, or IQ.

Constructive Universalism: Sen and Sensitivity to Difference

Amartya Sen’s capability approach is, on the one hand, in line with universalism such as exhibited in Martha Nussbaum’s capabilities approach and Len Doyal and Ian Gough’s human need theory. On the other hand, his approach puts priority on people’s “self-evaluation” of capabilities and needs. The latter emphasis makes his approach distinctly sensitive to people’s differences such as gender, ethnicity, disability, sexual orientation, etc.. One could ask, however, how successfully the former commitment to universalism relates to this latter feature that places importance on taking difference seriously. This question is especially relevant with respect to global justice and gender, for example. To offer a potential answers to this question is main goal of this paper.

Identificación de factores de riesgo asociados a fatiga en personal de enfermería en una clínica del sector privado de la ciudad de Bogotá, Colombia

La fatiga asociada a la carga de trabajo impuesta en trabajadores del sector salud es un factor directamente relacionado con el nivel de desempeño del trabajador y por lo tanto de la seguridad del paciente. El objetivo del presente estudio es realizar una evaluación multidimensional de la fatiga laboral percibida del personal de enfermería de una Institución Prestadora de Servicios de Salud (IPS) de IV nivel la ciudad de Bogotá. Para la valoración de fatiga se aplicó la versión en español del Inventario Sueco de Fatiga Ocupacional (SOFI-S) acompañado de preguntas abstraídas de la batería de riesgo psicosocial del Ministerio de la Protección Social y un cuestionario demográfico. Se encuestaron 60 enfermeras (3,3% hombres, 96,7% mujeres). Los principales factores asociados a la generación de fatiga son las horas de sueño, el turno y las actividades del hogar. La agrupación factorial genera 4 dimensiones de fatiga y no 5 como comúnmente se agrupa el cuestionario SOFI.

Disabled characters in plays

In attempting to answer the question ‘How is disability represented in plays?’ two approaches are considered, one semiotic and literary and the other concerned with notions of stereotyping drawn from disability studies. The five plays on which the discussion is based are school examination set texts, raising questions about classroom discourse and interpretation. Pilot study data drawn from students’ work in examinations are offered to suggest possible answers to those questions.

The case of pre-natal diagnosis

This chapter reconsiders critiques of pre-natal diagnosis in Disability Studies. Underlying assumptions about reproductive technologies are analysed to demonstrate that while many critiques of pre-natal diagnosis by Disability activists and theorists are concerned about children being the product of 'choice' through the selective effects of pre-natal diagnosis, the issue that reproductive technologies (such as IVF) themselves necessarily always already rely on 'choice' -- namely the choice for a 'biological' or 'own' child (different terms are used) -- is nowhere considered. The chapter considers several consequences of thinking through this issue and its implications.

Fish or n3-PUFA intake and body composition: a systematic review and meta-analysis.

Obesity is a major public health issue and an important contributor to the global burden of chronic disease and disability. Studies indicate that fish and omega-3 polyunsaturated fatty acids (n3-PUFA) supplements may help prevent cardiovascular and metabolic diseases. However, the effect of fish oil on body composition is still uncertain, so we performed a systematic review of randomized controlled trials and the first meta-analysis on the association between fish or fish oil intake and body composition measures. We found evidence that participants taking fish or fish oil lost 0.59 kg more body weight than controls (95% confidence interval [CI]: -0.96 to -0.21). Treatment groups lost 0.24 kg m(-2) (body mass index) more than controls (-0.40 to -0.08), and 0.49 % more body fat than controls (-0.97 to -0.01). Fish or fish oil reduced waist circumference by 0.81 cm (-1.34 to -0.28) compared with control. There was no difference for fat mass and lean body mass. Further research is needed to confirm or refute our findings and to reveal possible mechanisms by which n3-PUFAs might reduce weight.

The Five Senses in Medieval and Early Modern England

Edited by Annette Kern-Stähler, Beatrix Busse, and Wietse de Boer The essays collected in The Five Senses in Medieval and Early Modern England examine the interrelationships between sense perception and secular and Christian cultures in England from the medieval into the early modern periods. They address canonical texts and writers in the fields of poetry, drama, homiletics, martyrology and early scientific writing, and they espouse methods associated with the fields of corpus linguistics, disability studies, translation studies, art history and archaeology, as well as approaches derived from traditional literary studies. Together, these papers constitute a major contribution to the growing field of sensorial research that will be of interest to historians of perception and cognition as well as to historians with more generalist interests in medieval and early modern England.

Aproximaciones a una crítica posestructuralista de la pedagogía de la diversidad

La ponencia propone problematizar el paradigma de la normalidad implicado en los discursos pedagógicos centrados en el reconocimiento de la diversidad, puestos en circulación a partir de mediados de la década de 1980 en Argentina. Tomamos como punto de partida el surgimiento de los discursos pedagógicos normalizadores en el siglo XIX, donde se determinó y prescribió un tipo de comportamiento y grado de educabilidad natural y esperable. Normal es, siguiendo a Canguilhem, el término por el cual se va a designar el prototipo escolar y el estado de salud orgánica. El desvío o la transgresión a la norma hizo posible producir y clasificar a los sujetos bajo nominaciones de monstruosidad, degeneración, peligrosidad e indocilidad, delimitando a las infancias y juventudes anormales. En este sentido el saber pedagógico se constituyó en relación al saber médico, jurídico y psicológico, como el fundamento central de la escuela moderna. Resulta significativo mencionar que es en este período cuando la escuela comenzará a aplicar tecnologías de modo de definir los destinos del alumnado. Como señala M. Foucault el anormal es un tipo de niño, no un enfermo, es alguien sumergido dentro de la propia infancia normal. Sin embargo, en las últimas décadas del siglo XX, tanto en plano social como en el académico, surgieron miradas e iniciativas que han puesto en cuestión el poder normalizador. Así, tanto el movimiento de personas con discapacidad como, por ejemplo, los estudios e investigaciones realizadas en el marco de los disability studies, han irrumpido en la arena pública, denunciando los discursos y las relaciones de poder que mantienen a grupos e individuos en situación de opresión, desigualdad, invisibilización que los priva de una participación social e interlocución plena. Estas demandas han dado lugar a una re?exión crítica sobre los discursos pedagógicos centrados en la atención a la diversidad que, en términos generales, abordan la relación pedagógica a partir de concepciones como las de tolerancia, aceptación, integración, donde Uno tolera y el Otro es tolerado, el normal se contacta con el anormal que es el diverso, lo cual deja intacto, inconmovible, al paradigma de la normalidad. Esta perspectiva no exige repensar/se ni modificar/se ninguno de sus supuestos en razón de incluir a los otros en sus propias lógicas, a cambio despolitiza las diferencias y borra la desigualdad. Siendo que la génesis del discurso de la pedagogía es normalizador, se hace necesario retomar la pregunta propuesta por Valeria Flores "en tanto la normalidad es un producto de la pedagogía ¿Es posible una pedagogía que trabaje contra sí misma?"