04 SES 14 A JS, Working with Autistic Children: A Transnational Overview
Joint Paper Session NW 04 and NW 14
The results of various research show that autism spectrum disorders have a significant impact on both the child’s socio-educational development and the quality of their family functioning. These children are characterised by difficulties in participating in social interaction with peers and adults (Camargo et al., 2014) since they lack tools necessary for adaptation (Preis, 2007), namely, to perceive positive and negative emotions caused by an experience, and to respond to daily life requirements in a socially acceptable way through the use of different emotions ranging from happiness to sadness, from nervousness to tranquillity, and from anger to joy (Hamlin, 2016). A constantly elevated level of stress experienced is characteristic of these children (Kushki et al., 2013), as well as poorly developed abilities to apply stress management strategies (Attwood, 2006). The quality of the adaptation and inclusion of a child with autism spectrum disorder into educational and community activities depends not solely on their own effort and profile but also on the impact of the surrounding environment (Steinbrenner et al., 2015). The immediate educating environment for the child is their family, school, and peers. However, research results demonstrate that families raising children with autism spectrum disorders, equally to the children themselves, constantly experience stress and anxiety of particularly high levels. The level of stress in these parents exceeds that of the parents with children with mental disorders or chronic diseases (Johnson et al., 2011). The state of stress affects not only parents but also other children in the family (Rao, Beidel, 2009). The stress experienced in the family is directly linked to the behavioural problems of the child (Rao, Beidel, 2009, Johnson et al., 2011), and particularly enhances emotional tension in mothers (Estes et al., 2009). Research results show that in many cases, families face social isolation or changes in the relationships within the family (Nealy et al., 2012). Whereas the children’s mental health is significantly influenced by their parents’ participation in their emotional development processes (Bowie et al., 2013). The parenting quality has crucial importance in overcoming depressive moods in the family that derive from the consequences of the child’s disability. It is important not only for the wellbeing of the children but also to that of the parents. Mutual support between spouses is of particular significance to mothers, while fathers direct their appreciation to external support as well (Kersh et al., 2006). The participation of a child with autism spectrum disorder in community life and educational process does not merely depend on their biologically pre-determined bodily condition and own efforts but also on the processes taking place in their immediate environment, in which the child also takes part. The surrounding environment affects the child’s cognitive and emotional spheres, and their behaviour, while at the same time being subject to influence from the child’s behaviour itself (Steinbrenner et al., 2015). Deeper understanding of these processes allows to model more favourable conditions for the fully-fledged inclusion of these children into the processes of education and community life.
This research aims at answering the following question: how do processes relevant to the socio-educational inclusion of a child and their family evolve in a family affected by autism spectrum disorder? Research object is the processes of socio-educational inclusion as experienced by parents raising children with an autism spectrum disorder, and the teachers that educate the latter. Research methods. The research was carried out via the method of qualitative content analysis. The research data was collected via mixed data collection method: a) the selection of entries in a thematic Facebook group; b) in-depth interviews. The data was analysed by applying latent content analysis through the method of induction. Research process and participants. In order to uncover the processes of socio-educational inclusion and its dynamics in families raising children with autism spectrum disorders, a closed thematic online self-support group dedicated to the issues of autism was chosen. During the course of the research, the group had 3300 members. During the first reading, 160 entries (units of meaning) were selected for the data analysis, which reflected interpersonal connections relevant for the socio-educational inclusion of the family and its environment. In order to analyse the ontogenesis of the socio-educational inclusion of children with autism spectrum disorders in the framework of interactions between their family, school, and peer microsystems, parents who were members of the online group were invited to volunteer for the in-depth interviews. 5 mothers volunteered who raise children with ASD which are in the first and second years of school. They also invited their children’s teachers, one each (in total 5). During the in-depth interview, the research participants were asked a substantial question, further leading to the conversation aimed at revealing the personal experience of the interviewee. The research data was analysed by reading selected entries as well as the transcript of the interviews, encoding, grouping, abstracting, and interpreting the data that was of relevance to the research.
The research results allow to identify stages in the genesis of inclusion of families affected by ASD, which naturally replace one another. In individual cases, certain stages may be overstepped as a result of certain internal or external conditions. The first stage is Disaster, which occurs when the family develops suspicion of the child’s potential diagnosis of autism, or upon learning about it. This stage is characterised by particularly high levels of emotional load on the parents, confusion, desperate search for information on future prospects. The second stage is Exclusion. This stage reminds of the nature of autism itself, namely, avoiding social connections, withdrawal, and limiting social relationships. This stage carries a high likelihood of the collapse of the family. On the other hand, in cases of strong parenthood and awareness of autism-induced challenges, this stage might be omitted in the ontogenesis of the inclusion of the family. The third stage is Acceptance. This stage is characterized by finding meaning in the present situation, opening up, and discovering the uniqueness of one’s child. The fourth stage is Normalization. Family connections are restored or established anew, and the situation of autism is seen as a natural social phenomenon. The research results demonstrate particularly significant influence the interaction with peers has on the genesis of the inclusion of children with ASD. The interaction of a child with ASD with their peers encourages him or her to follow the social example, it develops communication skills, and enhances their pro-activeness in building interpersonal relationships. The research results reveal the stages in the genesis of the inclusion processes of families affected by autism, which occur due to certain causes. Awareness of these causes, as well as assistance in overcoming them may help the families to overstep certain stages and encourage positive socio-educational inclusion.
Attwood, T. (2006). The complete guide to Asperger's syndrome. Jessica Kingsley Publishers. Bowie, B. H., Carrère, S., Cooke, C., Valdivia, G., McAllister, B., & Doohan, E. A. (2013). The role of culture in parents’ socialization of children’s emotional development. Western journal of nursing research, vol. 35/issue 4, pp 514-533. Camargo, S. P. H., Rispoli, M., Ganz, J., Hong, E. R., Davis, H., & Mason, R. (2014). A review of the quality of behaviorally-based intervention research to improve social interaction skills of children with ASD in inclusive settings. Journal of autism and developmental disorders, 44(9), 2096-2116. Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R.(2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, vol. 13/issue 4, pp 375-387. Hamlin, T. (2016). Autism and the Stress Effect: A 4-step lifestyle approach to transform your child’s health, happiness and vitality. London & Philadelphia: Jessica Kingsley Publishers. Johnson, N., Frenn, M., Feetham, S., & Simpson, P. (2011). Autism spectrum disorder: Parenting stress, family functioning and health-related quality of life. Families, systems, & health, vol. 29/issue 3, p 232. Kersh, J., Hedvat, T. T., Hauser‐Cram, P., & Warfield, M. E. (2006). The contribution of marital quality to the well‐being of parents of children with developmental disabilities. Journal of Intellectual Disability Research, vol. 50/issue 12, pp 883-893. Kushki, A., Drumm, E., Mobarak, M. P., Tanel, N., Dupuis, A., Chau, T., & Anagnostou, E. (2013). Investigating the autonomic nervous system response to anxiety in children with autism spectrum disorders. PLoS one, 8(4), e59730. doi: 10.1371/journal.pone.0059730. Nealy, C. E., O'Hare, L., Powers, J. D., & Swick, D. C. (2012). The impact of autism spectrum disorders on the family: A qualitative study of mothers’ perspectives. Journal of Family Social Work, vol. 15/issue 3, pp 187-201. Preis, J. (2007). Strategies to promote adaptive competence for students on the autism spectrum. Support for Learning, 22(1), 17–23. doi:10.1111/j.1467-9604.2007.00440.x. Rao, P. A., & Beidel, D. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior modification, vol. 33/issue 4, pp 437-451. Steinbrenner, J. R. D., & Watson, L. R. (2015). Student engagement in the classroom: The impact of classroom, teacher, and student factors. Journal of autism and developmental disorders, 45(8), 2392–2410. doi:10.1007/s10803-015-2406-9.
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