Preparing for Motherhood: Women with Intellectual Disabilities on Informational Support Received During Pregnancy and Knowledge about Childbearing
Lynne Potvin, Virginie Cobigo and Hilary Brown
Support Received During Pregnancy and Knowledge about Childbearing
Information about pregnancy and childbirth is frequently inaccessible to women with intellectual and developmental disabilities (IDD). Our objectives were therefore to describe pregnancy and childbirth-related knowledge among women with IDD, perinatal informational support received, and the barriers and facilitators to obtaining this support. Using secondary data from a broader qualitative study on social support received by women with IDD during pregnancy and childbirth, we developed two case studies specific to informational support received during this period. Content analysis was used to analyze interview data. Both women with IDD possessed general perinatal knowledge. Factors influencing receipt of informational support included information format (e.g., written versus verbal instruction; group vs. one-on-one learning), level of autonomy, and caregiver involvement (formal and informal). Findings are consistent with previous research demonstrating that perinatal informational support is not always accessible to women with IDD. Accessible perinatal informational support may contribute to improved pregnancy outcomes and therefore should be a social and clinical priority.
Stress des parents d’adolescents ayant un trouble du spectre de l’autisme Stress in Parents of Adolescents with Autism Spectrum Disorder
Carolanne Ponton, Nathalie Poirier, Émilie Cappe
Les parents d’enfants ayant un trouble du spectre de l’autisme (TSA) ont un niveau de stress plus élevé que les parents ayant un enfant au développement typique. Les effets associés au stress sont également plus négatifs chez les parents d’enfants ayant un TSA que chez les parents d’enfant présentant un autre trouble. Jusqu’à présent, un grand nombre d’études ont évalué la qualité de vie ainsi que le stress chez les parents d’enfant ayant un TSA. Toutefois, très peu concernent la population adolescente. En conséquence, une étude a été entreprise pour tenter de montrer les effets des caractéristiques des adolescents présentant un TSA (niveau d’autonomie, niveau de communication et présence de troubles associés) sur le stress perçu par son parent. Dans le cadre de cette recherche, un total de 34 parents d’adolescents (12 à 18 ans) présentant un TSA ont répondu à un questionnaire permettant d'évaluer leur stress et les caractéristiques de leur enfant. Les résultats démontrent que le niveau perçu d’autonomie de l’adolescent influence le stress perçu des parents de manière significative.
Parents of children with autism spectrum disorder (ASD) have a higher level of stress compared to parents of typically developing children. The effects that are associated with stress are also more negative in parents of children with ASD than in those with any other disorder. A lot of studies have evaluated the quality of life and the parental stress of parents of children that have ASD. However, only a few studies concern the adolescent population. Accordingly, parents of children aged 4 to 18 years were invited to complete a questionnaire about stress and the independence of their children with ASD (the level of autonomy, the level of communication and the presence of associated disorders). The present study focused on the responses of 34 parents of adolescents (12 to 18 years of age) with ASD. The results show that perceived level of independence of the adolescents is significantly associated with parental stress.
The Effect of Instructional Pacing on Skill Acquisition and Maintenance for Children with Developmental Disabilities
Nicole Neil, Kaitlyn Young, Rebecca Hansford and Larissa Zwick
Discrete trial training is an instructional method based on the principles of applied behaviour analysis where skills are taught in discrete units. This instructional method has empirical support for increasing skills among children with developmental disabilities. Instructional pacing has been identified as a key variable in discrete trial training that may enhance skill acquisition. Instructional pacing is the rate at which each individual presentation of the instructional target occurs. Research examining the effects of varying the pace of instruction has produced inconsistent findings. This study sought to examine the effects of five paces of instruction on skill acquisition for young learners. Pace was manipulated by varying the interstimulus interval. Two children with a diagnosis of autism spectrum disorder and one with Down syndrome participated in the study. Instructional targets, the specific behavioural skills to be taught to the participants, included: tact: (expressive labelling—i.e., responding to a particular object or event or property of an object or event), listener responding (responding to an instruction), and intraverbal skills (responding to social questions). In contrast to earlier research, participants achieved mastery by demonstrating a previously determined level of skill without prompting in the fewest number of trials in the slowest pace condition. The pace of instruction associated with the fewest minutes to mastery, or most efficient pace, varied across participants. Skill maintenance also varied across participants. Results suggest that the optimal pace of instruction may vary across individuals. Implications for determining the optimal pace of instruction in discrete-trial training with young learners are discussed.
Étude exploratoire sur les représentations du comportement dans les dessins d’un frère ou d’une sœur ayant un trouble du spectre de l’autisme
Nathalie Poirier, Georgette Goupil et Julien Morand
Le trouble du spectre de l’autisme (TSA) présenté par un enfant a des conséquences importantes sur la vie de ses parents et de sa fratrie. Cette recherche vise à évaluer les représentations de la fratrie d’un enfant ayant un TSA à l'aide de dessins et d'entretiens. Huit fratries d’un enfant ayant un TSA ont dessiné leur frère ou leur sœur dans trois activités différentes : en famille, à la récréation sur la cour d’école et lors d’un jeu partagé. Elles ont aussi répondu, en entretien, à diverses questions visant à décrire leurs dessins. Les résultats révèlent que les fratries perçoivent leur frère ou leur sœur présentant un TSA comme un membre à part entière de la famille. Cependant, elles perçoivent plusieurs caractéristiques et conséquences du TSA dans les interactions sociales.
Considering the consequences of the autism spectrum disorder (ASD) on family life, the perceptions of young siblings of children with ASD merits deeper understanding. The aim of this research was to evaluate young siblings’ representations of children with ASD using drawings and interviews. Eight sisters of a sibling with ASD represented their brother or sister in three different situations: in a family activity, in the school yard during recess, and in a game together. Results revealed that these children perceive their brother or sister with ASD as a full participant in the family's daily activities. However, they recognize several characteristics and consequences of ASD in the social interactions of their siblings who have ASD.
Social Validity of a Kindergarten-Readiness Behavioural Intervention for Children with Autism
Karis Cochrane, Carly Cressman and Toby Martin
Social validity assessments measure consumer satisfaction with the goals, procedures, and outcomes of a program. This study aimed to measure the social validity of a modified early intensive behavioural intervention (EIBI) for 5-year-old children with a formal autism
spectrum disorder diagnosis. We evaluated a pilot program developed by St. Amant called the Pre-Kindergarten Program (PKP). Eight populations were surveyed using six unique questionnaires to measure indirect consumers', immediate community members', and extended community members' satisfaction with the goals, procedures, and outcomes of the PKP. Questionnaires were distributed via email and mail containing a web-browser link and/or a paper questionnaire. A total of 82 responses across all populations were analyzed for within-group and
between-group differences using descriptive statistics and Pearson correlations to make recommendations for how Pre-Kindergarten EIBI programs can most effectively meet consumer needs. The PKP had good social validity overall. Waitlist families and families being served were the most satisfied overall; clinicians outside the program were the least satisfied group. Lack of parental involvement and limited service hours were recurring concerns mentioned among various populations in open-ended questions. Further research is required to
determine the social validity of other EIBI programs and the factors that relate to social validity.
Challenging Social Situations for Students with Autism Spectrum Disorder Integrated into Mainstream Classrooms in Quebec: The Specialists’ Perspective
Dona Roy, Mélina Rivard
Social communication deficits are underlined as the most salient symptoms of autism spectrum disorder (ASD) in the DSM-5. Although there is some information from the educational sector about how students with ASD who have been integrated into mainstream classrooms are coping with challenging social situations, there is a lack of information from ASD specialists about this important issue, especially in the Quebec school system. To address this gap in knowledge, 34 ASD specialists answered an online questionnaire regarding their perception of such students who were aged 8 to 13 years old. They described the challenging social situations these students face, the personal and environmental characteristics that facilitate their social integration, and the strategies used in school to prevent the occurrence of challenging social situations, including the use of new technologies. Data were analyzed with the continuous thematization method. Participants indicated that understanding and abiding to social rules was the most challenging social situation experienced by students with ASD. Flexibility and open-mindedness of the school were the most reported personal and environmental characteristics required to facilitate integration and child specific interventions were the most common strategies. The strategies to reduce challenging social situations are centred on the student—eclectic and of varied levels of efficiency. Participants were generally favourable to the use of technology in teaching social communication skills to students with ASD. In Quebec, the structure of services given to students with ASD places ASD specialists in key positions to increase collaboration between students, parents, educators and governmental services. The present findings underline the unique perspective of such specialists and the potential of their key positions in this regard.
La perception des parents envers les services professionnels d’élèves présentant un trouble du spectre de l’autisme scolarisés en classe spécialisée
Erika-Lyne Smith, Nathalie Poirier et Nadia Abouzeid
Cet article documente la perception des parents d'enfants présentant un trouble du spectre de l'autisme (TSA) scolarisés en classe spécialisé dans une école régulière. Ce trouble se manifeste au niveau de la communication sociale et du comportement. La prise en charge requiert un soutien de différents professionnels. La présente étude compare les services en contexte scolaire, privé et public reçus lors de la scolarisation. La satisfaction parentale et les défis rencontrés sont explorés. Trente parents d'élèves ayant un TSA ont été interviewés. Les résultats démontrent une divergence des services offerts. Le taux de services diminue en fonction de l'ßge. Un besoin de services au secondaire est rapporté. Les parents mentionnent vivre des défis.
Parental Perception Regarding Services Offered to Students with Autism Spectrum Disorder
This article describes the perception of parents of children with autism spectrum disorder (ASD) regarding professional services. Weak communication skills as well as restricted, repetitive and stereotyped patterns of behaviours characterize the disorder. The majority of students with ASD require professional support to optimize their school functioning and achievement. The present study compares the professional services received during preschool, elementary school and high school. Parental experience and challenges regarding services were examined. Thirty parents of students with ASD were interviewed. Results outline a decrease in the number of services offered as the child gets older. While an increase in social services during high school is reported, parents evoke a great need for professional help at this stage. Parents also face a variety of service-related challenges.