As necessidades e redes de apoio de famílias de pessoas com perturbação do espectro do autismo

RESUMO: O objectivo do presente estudo consistiu em avaliar as necessidades de apoio de 63 pais com filhos (crianças, jovens ou adultos) com Perturbação do Espectro Autista (PEA), no que diz respeito a: (1) necessidades de apoio identificadas pelos pais, (2) redes de suporte destes pais e (3) relação entre necessidades de apoio e características dos pais e filhos. Todos os pais tinham participado no 1º nível do projecto nacional intitulado “Oficinas de Pais/Bolsas de Pais” – o Grupo de Apoio Emocional (GAE). No sentido de verificar se ocorreram mudanças nas suas necessidades de apoio, avaliou-se o antes (momento I) e o depois do GAE (momento II). Utilizou-se a Escala de Funções de Apoio Social (Dunst, Trivette, & Deal, 1988) para avaliar as necessidades de apoio e a Escala de Apoio Social (Dunst, Trivette, & Deal, 1988) para avaliar as redes de apoio social. Os resultados demonstram que os pais de pessoas com PEA apresentam (tanto antes como após a frequência nas oficinas do GAE) sobretudo necessidades de apoio de carácter emocional e profissional, e menos necessidades de carácter prático. Para suprir as necessidades de apoio, antes e após o GAE, estes pais recorreram, numa primeira opção, ao cônjuge, aos profissionais e posteriormente aos amigos. Os vizinhos constituíram a rede de apoio social a quem menos recorreram. Apesar de algumas diferenças observadas entre o momento I e momento II, estas não foram estatisticamente significativas nem para as necessidades de apoio, nem para as redes de apoio social.------------------------- ABSTRACT: The study aimed to evaluate the support needs of 63 parents of children, adolescents and adults with Autistic Spectrum Disorder (ASD), concerning three aspects: (1) support needs that parents identified as major target, (2) social support network of these parents, and (3) the relationship between support needs and parent and children characteristics. All parents had participated in the first level of the national project “Oficinas de Pais/Bolsas de Pais” - the Emotional Support Group (ESG). In order to verify if any changes occurred in the needs of support, evaluation was carried before (moment I) and after (moment II) the ESG. In this context, parents filled the Supports Function Scale (Dunst, Trivette, & Deal, 1988), which evaluated their different needs of support, and also the Social Supports Scale (Dunst, Trivette & Deal, 1988) which in turn evaluated their social support network. The results showed that parents of children with ASD, both before and after the ESG, revealed emotional and professional needs and, in a less extent, also practical needs. To address the referred needs (before and after the ESG) these parents seek in the first place the support of their spouse, then that of professionals and, later on, that of friends. Neighbours are the support that parents least address. Despite some observed differences in support needs and social support networks between the two moments, these were, however, not statistically significant.

A case study of a high functioning autistic female in a games setting

This study detennined whether or not a high functioning autistic girl can develop game structure strategies that may allow her to become an active participant in a game or sport environment. This qualitative case study involved the in-depth observation and description of one high functioning autistic student whose experience in a game setting would be studied. The type of case study carried out was a combination of descriptive and evaluative. This experience was investigated through structured, individual programming. Through on-site observation, journal entries, and hands on instruction, I was able to describe what progress the autistic student made in tenns of skill development. The results of the study demonstrated that a high-functioning autistic female has the potential to develop the necessary motor skills to participate in the chosen sport of basketball. The observation results and field notes contributed to a movement profile which described her habits of body. Teaching strategies and frameworks utilized during the study were described and listed. Insights and commentary are further provided. A thorough examination of autism and games programming is provided in the literature review.

Teaching sexual abuse prevention skills to two children with intellectual disabilities through game play

The current study examined the effectiveness of a sexual abuse prevention program developed locally for children with intellectual disabilities. The program package included a board game with informational storybooks that were designed to be used in a family setting. Additionally, this research sought to determine if parents could be effective at presenting the sexual abuse pr~vention materials to their children. A multiple baseline across behaviours design was used with two participants with a diagnosis of autism. Through role play scenarios as well as verbal knowledge tests, it was determined that the program was effective at teaching the participants the skills presented for self protection. It was also determined that the skills learned were generalized to scenarios that were untrained during the game play. Finally, with additional supports, it was determined that parents were able to effectively teach their children the required skills.

An exploration of interdisciplinary practice through an examination of specific disciplinary interpretations of stereotypic behaviour

As identified in the literature, a lack of understanding of the functional properties and triggers of stereotypic behaviour exists. When looking at this behaviour from an Applied Behaviour Analysis (ABA) framework, limitations are evident around identifying specific sensory modalities and functional properties of such behaviour. Antecedents particularly are difficult to identify and interpret. Therefore an interdisciplinary approach to assessment using two types of professional services commonly received by individuals with autism was proposed. However before this approach could be investigated the current interpretations of Stereo typic behaviour by each professional must be examined along with perceptions of interdisciplinary collaboration. The purpose of this study was to use an in-depth qualitative analysis to reveal the interpretations of stereotypy and collaboration from the perspectives of two particular professionals. The results of the study demonstrated that occupational therapists and behaviour analysts likely have different interpretations of the same behaviour,that consultation is the common model used to interact with other disciplines, and that professionals may have mixed feelings toward interdisciplinary practices as an approach to stereotypic behaviour. Strengths and limitations of the study were highlighted along with specific directions for future research.

Clinician-Perceived Bridges and Barriers to Parental Implementation of Picture Exchange Communication System (PECS): An evaluation.

Picture Exchange Communication System (PECS) is an augmentative and alternative communicative system that improves communication and decreases problem behaviors in children with Developmental Disabilities and Autism. The mediator model is a validated approach that clinicians use to train parents to perform evidence-based interventions. Parental non-adherence to treatment recommendations is a documented problem. This qualitative study investigated clinician-perceived factors that influence parental adherence to PECS recommendations. Three focus groups (n=8) were conducted with Speech Language Pathologists and Behavior Therapists experienced in providing parents with PECS recommendations. Constant comparison analysis was used. In general, clinicians believed that PECS was complex to implement. Thirty-one bridges were identified to overcome complexity. Twenty-two barriers and 6 other factors also impacted parental adherence. Strategies to address these factors were proposed based on a review of the literature. Future research will be performed to validate these findings using parents and a larger sample size.

Effectiveness of Self-Instructional Mediator Training in Applied Behaviour Analysis

Interventions using applied behaviour analysis (ABA) are widely used with children with autism spectrum disorders (ASD). Individuals who work with this population are important to target for ABA education. This study evaluated the efficacy of a self-directed program in increasing parent and student ABA knowledge and skills, self-efficacy, and new skill development in children with ASD. Study 1 was a pilot study of the newly developed evaluation materials. Study 2 tested the self-instructional package with three parents of children with ASD, three university students, and eight children diagnosed with ASD. Parents and students were given the Simple Steps ABA training package to use independently and were measured using a multiple baseline across participants and/or skills design. After training, ABA knowledge scores and self-efficacy showed variable improvement as did children’s appropriate behaviours. These results suggest that more research is needed to determine the efficacy of a self-instructional ABA package.

I Believe in me, not OCB: Evaluation of Group Function-Based CBT as a Treatment for Obsessive Compulsive Behaviour in Four Children with HFA

Researchers have conceptualized repetitive behaviours in individuals with Autism Spectrum Disorder (ASD) on a continuum oflower-Ievel, motoric, repetitive behaviours and higher-order, repetitive behaviours that include symptoms ofOCD (Hollander, Wang, Braun, & Marsh, 2009). Although obsessional, ritualistic, and stereotyped behaviours are a core feature of ASD, individuals with ASD frequently experience obsessions and compulsions that meet DSM-IV-TR (American Psychiatric Association, 2000) criteria for Obsessive-Compulsive Disorder (OCD). Given the acknowledged difficulty in differentiating between OCD and Autism-related obsessive-compulsive phenomena, the present study uses the term Obsessive Compulsive Behaviour (OCB) to represent both phenomena. This study used a multiple baseline design across behaviours and ABC designs (Cooper, Heron, & Heward, 2007) to investigate if a 9-week Group Function-Based Cognitive Behavioural Therapy (CBT) decreased OCB in four children (ages 7 - 11 years) with High Functioning Autism (HFA). Key treatment components included traditional CBT components (awareness training, cognitive-behavioural skills training, exposure and response prevention) as well as function-based assessment and intervention. Time series data indicated significant decreases in OCBs. Standardized assessments showed decreases in symptom severity, and increases in quality of life for the participants and their families. Issues regarding symptom presentation, assessment, and treatment of a dually diagnosed child are discussed.

Temple Grandin fonds, 1974-2006 (non-inclusive)

Temple Grandin was born in Boston, Massachusetts on August 29,1947 to Richard Grandin and Eustacia Cutler. She was diagnosed with autism at age 2. She suffered from delayed speech development and did not begin to speak until the age of 4. Temple’s mother defied the doctors and kept her out of institutions. Temple was given speech therapy as well as an intensive education. Her high school science teacher and her aunt on a ranch in Arizona inspired Temple to continue her studies and pursue a career as a scientist and livestock equipment designer.She graduated from Hampshire Country School (a boarding school for gifted children) in Ridge, New Hampshire in 1966, and earned a bachelor’s degree in psychology from Franklin Pierce College in 1970. In 1975, she received a master’s degree in animal science from Arizona State University and then a doctoral degree in animal science from the University of Illinois in 1989. She is currently a professor at Colorado State University. Dr. Grandin is one of the world’s leaders in the design of livestock handling facilities. She has done extensive work in design of handling facilities for animals and has developed animal welfare guidelines for the meat industries. Dr. Grandin is a past member of the board of directors of the Autism Society of America. She lectures to parents and teachers throughout the U.S. on her experiences with autism. She makes the case that the world needs people on the autism spectrum: visual thinkers, pattern thinkers and verbal thinkers. Some of Temple Grandin’s books include: Animals Make Us Human, Animals in Translation, The Way I See It, The Autistic Brain, and Different…Not Less. In 2010, a movie entitled “Temple Grandin” starring Clare Danes was released. The movie was based on Grandin’s own writings. Temple Grandin is an expert on animal behavior, a bestselling author, and an autism activist. In 2010, she was listed in the “Heroes” category in the “Time” list of the world’s 100 most influential people. She has received numerous awards including an honorary doctorate from McGill, the University of Illinois and Duke University. Temple Granin is a philosophical leader of both the animal welfare and autism advocacy movements. sources: http://www.templegrandin.com/ http://en.wikipedia.org/wiki/Temple_Grandin

Closing the Summer Learning Gap for Vulnerable Children: An Examination of a Summer Family Literacy Program for Junior Kindergarten Children At-Risk for Reading Difficulties

The learning gap created by summer vacation creates a significant breach in the learning cycle, where student achievement levels decrease over the course ofthe summer (Cooper et aI., 2000). In a review of 39 studies, Cooper and colleagues (1996) specified that the summer learning shortfall equals at least one month loss of instruction as measured by grade level equivalents on standardized test scores. Specifically, the achievement gap has a more profound effect on children as they grow older, where there is a steady deterioration in knowledge and skills sustained during the summer months (Cooper et aI., 1996; Kerry & Davies, 1998). While some stakeholders believe that the benefits of a summer vacation overshadow the reversing effect on achievement, it is the impact of the summer learning gap on vulnerable children, including children who are disadvantaged as a result of requiring special educational needs, children from low socioeconomic backgrounds, and children learning English as a second language, that is most problematic. More specifically, research has demonstrated that it is children's literacy-based skills that are most affected during the summer months. Children from high socioeconomic backgrounds recurrently showed gains in reading achievement over the summer whereas disadvantaged children repeatedly illustrate having significant losses. Consequently, the summer learning gap was deemed to exaggerate the inequality experienced by children from low socioeconomic backgrounds. Ultimately, the summer learning gap was found to have the most profound on vulnerable children, placing these children at an increased chance for academic failure. A primary feature of this research project was to include primary caregivers as authentic partners in a summer family literacy program fabricated to scaffold their children's literacy-based needs. This feature led to the research team adapting and implementing a published study entitled, Learning Begins at Home (LBH): A Research-Based Family Literacy Program Curriculum. Researchers at the Ontario Institute designed this program for the Study of Education, University of Toronto. The LBH program capitalized on incorporating the flexibility required to make the program adaptable to meet the needs of each participating child and his or her primary caregiver. As it has been well documented in research, the role primary caregivers have in an intervention program are the most influential on a child's future literacy success or failure (Timmons, 2008). Subsequently, a requirement for participating in the summer family literacy program required the commitment of one child and one of his or her primary caregivers. The primary caregiver played a fundamental role in the intervention program through their participation in workshop activities prior to and following hands on work with their child. The purpose of including the primary caregiver as an authentic partner in the program was to encourage a definitive shift in the family, whereby caregivers would begin to implement literacy activities in their home on a daily basis. The intervention program was socially constructed through the collaboration of knowledge. The role ofthe author in the study was as the researcher, in charge of analyzing and interpreting the results of the study. There were a total of thirty-six (36) participants in the study; there were nineteen (19) participants in the intervention group and seventeen (17) participants in the control group. All of the children who participated in the study were enrolled in junior kindergarten classrooms within the Niagara Catholic District School Board. Once children were referred to the program, a Speech and Language Pathologist assessed each individual child to identify if they met the eligibility requirements for participation in the summer family literacy intervention program. To be eligible to participate, children were required to demonstrate having significant literacy needs (i.e., below 25%ile on the Test of Preschool Early Literacy described below). Children with low incident disabilities (such as Autism or Intellectual Disabilities) and children with significant English as a Second Language difficulties were excluded from the study. The research team utilized a standard pre-test-post-test comparison group design whereby all participating children were assessed with the Test of Preschool Early Literacy (Lonigan et aI., 2007), and a standard measure of letter identification and letter sound understanding. Pre-intervention assessments were conducted two weeks prior to the intervention program commencing, and the first set of the post-intervention assessments were administered immediately following the completion of the intervention program. The follow-up post-intervention assessments took place in December 2010 to measure the sustainability of the gains obtained from the intervention program. As a result of the program, all of the children in the intervention program scored statistically significantly higher on their literacy scores for Print Knowledge, Letter Identification, and Letter Sound Understanding scores than the control group at the postintervention assessment point (immediately following the completion of the program) and at the December post-intervention assessment point. For Phonological Awareness, there was no statistically significant difference between the intervention group and the control at the postintervention assessment point, however, there was a statistically significant difference found between the intervention group and the control group at the December post-intervention assessment point. In general, these results indicate that the summer family literacy intervention program made an immediate impact on the emergent literacy skills of the participating children. Moreover, these results indicate that the summer family literacy intervention program has the ability to foster the emergent literacy skills of vulnerable children, potentially reversing the negative effect the summer learning gap has on these children.

Being Relational With Underserved Youth: A Reflective Process

When working with under-served youth, possibly the most important, yet often times the most difficult, thing for practitioners to do is to build positive, trusting, open relationships. This study aims to address this challenge. Two groups of under-served youth were examined, one being teens deemed “at-risk” and one being youth with Autism Spectrum Disorder (ASD). This study was novel in its approach as all efforts were made to ensure the youth's opinions on how to be relational with them were heard. Two youths with ASD were nonverbal and a special picture interview procedure was developed to allow their participation. Three thematic statements emerged from the data collected: 1. Youth need low anxiety relationships. 2. Youth need novel forms of engagement. 3. Youth need us to understand that their actions reflect their histories. The analyses that lead to these statements are described as well as the reasoning and implications of these statements.

Mandy Klein fonds

Mandy Klein was diagnosed with Asperger’s syndrome as an adult. Her husband also has Asperger’s syndrome, and together they have a daughter with autism. She lives in Ontario and writes about her family’s experiences with autism on her blog, Tales from an Autism Family, http://talesfromanaustismfamily.blogspot.ca.

Andrew Bloomfield collection, 2006-2012

Andrew Bloomfield, and his twin sister Victoria, were born on May 6, 1968 in Auckland, New Zealand. The following year, the family moved to Guelph, Ontario. It became apparent from the time Andrew was 14 months old that he differed considerably from his twin sister, and he was subsequently diagnosed with autism when he was four years old. As a result, he lived away from his family for much of his early life in order to participate in programs for autistic people. Andrew found this very difficult, but also made some significant progress. He became able to relate to and care for his dog, and was able to express his thoughts with Augmentative and Alternative Communication, especially using Supported Typing. His twin sister Victoria was an important person in his life, and her untimely death in a car accident in 1996 devastated him. However, his network of friends and family have provided immense support and helped him build a fulfilling and meaningful life. In 2004 Andrew founded a group of other adult communicators who "type to talk" which he named "Bridges-Over-Barriers". They meet monthly in Guelph and contributed to the 2010 volume with accompanying documentary film on DVD. He lives in his own home in Guelph, guaranteed by a housing trust, and has written several books, including an autobiography, Bridges over Barriers in My Life with Autism.

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.

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.

Bettelheim, Tinbergen and Hall fonds, 1972-1981

Elizabeth Hall was a managing editor of Psychology Today, who on separate occasions interviewed Oxford ethologist Nikolaas Tinbergen (1907-1988) and psychologist Bruno Bettelheim (1903-1990). Her 1973 interview with Tinbergen, conducted at his vacation home in the Cumberland region of northern England, was published later that year in Psychology Today. She left the magazine in 1976 to run the journal Human Nature, but left this position in 1979. She continued to contribute articles to various magazines, but most notably to Psychology Today. Her interview with Bruno Bettelheim appeared in that magazine in 1981.