Parents' perceptions of the impact of the home environment on youth living with an Autism Spectrum Disorder
AbstractBackground: The prevalence of autism spectrum disorders (ASD) is estimated at 1% worldwide. People living with ASDs are often very sensitive to environmental stimuli (e.g., noise). These stimuli influence the person-environment interaction in a positive or negative way, and an excess of stimuli could cause inappropriate or unexpected behavioural responses (e.g., crisis). The Model of Competence, explaining the person-environment relationship, is the conceptual framework chosen to guide this study. The objective is to explore parents’ perceptions regarding the influence of the home environment characteristics on persons living with ASD. Methods: A qualitative interpretive description design was used. Parents of youth with an ASD who lived in the family home until at least 16 years old participated in the study. Focus groups were conducted until data saturation. A thematic analysis was performed. Results: The elements impacting people living with an ASD are grouped under two themes: Non-human Environment and Human Environment. Although these elements have various effects on this population, noise, excess visual stimuli, unexpected visitors, and changes in the environment seem to be disturbing elements. Natural light, nature, a safe environment, and stability in the environment seem to have positive effects. Discussion: Even though the home environment is usually a safe and stable environment, these elements emerged as fundamental. Thus, the repercussions of this in other environments that are difficult to control should be something to reflect on. Conclusions: Identifying these elements and their effects allows for a better understanding of the interaction between the person with ASD and their environment, both human and non-human, guiding professionals in their interventions.
American Psychiatric Association. (2015). DSM-5 : manuel diagnostique et statistique des troubles mentaux (J. D. Guelfi & M.-A. Crocq, Trans.; 5th ed.). Issy-les-Moulineaux : Elsevier Masson.
Arnaiz Sánchez, P., Segado Vázquez, F., & Albaladejo Serrano, L. (2011). Autism and the Built Environment. In Intech (Ed.), Autism Spectrum Disorders - From Genes to Environment (pp. 364-380). Intech.
Autism Spectrum Disorders in the European Union (ASDEU). (2018). Executive summary 12/09/2018. http://asdeu.eu/wp-content/uploads/2016/12/ASDEUExecSummary27September2018.pdf
Autisme Quebec. (2019). L'autisme en chiffres. http://www.autisme.qc.ca/tsa/lautisme-en-chiffres.html
Boyle, P., Haines, D., Lovelock, L., & Innes, K. (2014). Home Safety for Children with Autistic Spectrum Disorder: Local Authority Occupational Therapy Intervention. British Journal of Occupational Therapy, 77(5), 243-250. https://doi.org/10.4276/030802214x13990455043485
British Medical Association. (2021). Autism spectrum disorder. Retrieved 19/04/2021 from https://www.bma.org.uk/what-we-do/population-health/child-health/autism-spectrum-disorder
Brown, N. B., & Dunn, W. (2010). Relationship between context and sensory processing in children with autism. American Journal of Occupational Therapy, 64(3), 474-483. https://doi.org/10.5014/ajot.2010.09077
Charman, T. (2014). Variability in neurodevelopmental disorders. Evidence from Autism Spectrum Disorders. In J. V. Herwegen & D. Riby (Eds.), Neurodevelopmental Disorders. Research challenges and solutions (pp. 117-140). Psychology Press.
Creswell, J. W. (2014). Research Design: Qualitative, Quantitative, and Mixed Methods Approaches (4 ed.). SAGE Publications.
Elsabbagh, M., Divan, G., Koh, Y.-J., Kim, Y. S., Kauchali, S., Marcín, C., Montiel-Nava, C., Patel, V., Paula, C. S., Wang, C., Yasamy, M. T., & Fombonne, E. (2012). Global Prevalence of Autism and Other Pervasive Developmental Disorders. 5(3), 160-179. https://doi.org/https://doi.org/10.1002/aur.239
Fombonne, E. (2003). Epidemiological Surveys of Autism and Other Pervasive Developmental Disorders: An Update. Journal of Autism and Developmental Disorders, 33(4), 365-382. https://doi.org/10.1023/a:1025054610557
Fortin, M.-F., & Gagnon, J. (2016). Fondements et étapes du processus de recherche : Méthodes quantitatives et qualitatives (3 ed.). Chenelière Éducation.
Fountain, C., Winter, A. S., & Bearman, P. S. (2012). Six developmental trajectories characterize children with autism. Pediatrics, 129(5), e1112-1120. https://doi.org/10.1542/peds.2011-1601
Gouvernement du Canada. (2018). Trouble du Spectre De L’autisme chez les enfants et les adolescents au Canada 2018. https://www.canada.ca/fr/sante-publique/services/publications/maladies-et-affections/trouble-spectre-autisme-enfants-adolescents-canada-2018.html#a2-2
Grandgeorge, M., & Masataka, N. (2016). Atypical Color Preference in Children with Autism Spectrum Disorder. Frontiers in Psychology, 7, 1-5, Article 1976. https://doi.org/10.3389/fpsyg.2016.01976
Howlin, P., & Moss, P. (2012). Adults with autism spectrum disorders. The Canadian Journal of Psychiatry, 57(5), 275–283.
Kanakri, S. M., Shepley, M., Varni, J. W., & Tassinary, L. G. (2017). Noise and autism spectrum disorder in children: An exploratory survey. Research in Developmental Disabilities, 63, 85-94. https://doi.org/10.1016/j.ridd.2017.02.004
Kirby, A. V., Boyd, B. A., Williams, K. L., Faldowski, R. A., & Baranek, G. T. (2017). Sensory and repetitive behaviors among children with autism spectrum disorder at home. Autism, 21(2), 142-154. https://doi.org/10.1177/1362361316632710
Krueger, R. A., & Casey, M. A. (2015). Focus Groups : A Practical Guide for Applied Research (5th ed.). SAGE
Landon, J., Shepherd, D., & Lodhia, V. (2016). A qualitative study of noise sensitivity in adults with autism spectrum disorder. Research in Autism Spectrum Disorders, 32, 43-52. https://doi.org/10.1016/j.rasd.2016.08.005
Ludlow, A. K., & Wilkins, A. J. (2009). Case report: Color as a therapeutic intervention. Journal of Autism and Developmental Disorders, 39(5), 815-818. https://doi.org/10.1007/s10803-008-0672-5
Mason, D., McConachie, H., Garland, D., Petrou, A., Rodgers, J., & Parr, J. R. (2018). Predictors of quality of life for autistic adults. Autism Research, 11(8), 1138-1147. https://doi.org/10.1002/aur.1965
McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018). Enhancing the Validity of a Quality of Life Measure for Autistic People. Journal of Autism and Developmental Disorders, 48(5), 1596-1611. https://doi.org/10.1007/s10803-017-3402-z
Miles, M. B., Huberman, M., & Saldana, J. (2014). Qualitative data analysis: A methods sourcebook (3rd ed.). SAGE. https://us.sagepub.com/en-us/nam/qualitative-data-analysis/book239534
Mostafa, M. (2008). An architecture for autism: concepts of design intervention for the autistic user. ArchNet - IJAR: International journal of architectural research, 2(1), 189-211. http://search.ebscohost.com/login.aspx?direct=true&db=bvh&AN=612560&lang=fr&site=ehost-live
Mostafa, M. (2014). Architecture for autism: autism ASPECTSS (TM) in school design. ArchNet - IJAR: International journal of architectural research, 8(1), 143-158. http://search.ebscohost.com/login.aspx?direct=true&db=bvh&AN=713892&lang=fr&site=ehost-live
Mostafa, M. (2015). Architecture for autism: Built environment performance in accordance to the autism ASPECTSSS design index. Design Principles and Practices: An International Journal 8.
Nazeer, A., & Ghaziuddin, M. (2012). Autism spectrum disorders: clinical features and diagnosis. Pediatr Clin North Am, 59(1), 19-25. https://doi.org/10.1016/j.pcl.2011.10.007
Organisation Mondiale de la Santé. (2019). Datos y cifras. Transtorno del espectro autista. https://www.who.int/es/news-room/fact-sheets/detail/autism-spectrum-disorders
Pfeiffer, B., Coster, W., Snethen, G., Derstine, M., Piller, A., & Tucker, C. (2017). Caregivers’ Perspectives on the Sensory Environment and Participation in Daily Activities of Children With Autism Spectrum Disorder. American Journal of Occupational Therapy, 71(4). https://doi.org/10.5014/ajot.2017.021360
Pfeiffer, B., Kinnealey, M., Reed, C., & Herzberg, G. (2005). Sensory Modulation and Affective Disorders in Children and Adolescents With Asperger’s Disorder. American Journal of Occupational Therapy, 59(3), 335-345.
Poljac, E., Hoofs, V., Princen, M. M., & Poljac, E. (2017). Understanding Behavioural Rigidity in Autism Spectrum Conditions: The Role of Intentional Control. Journal of Autism and Developmental Disorders, 47(3), 714-727. https://doi.org/10.1007/s10803-016-3010-3
QSR International. (2018). NVivo. In (Version 12)
Richards, C., Oliver, C., Nelson, L., & Moss, J. (2012). Self-injurious behaviour in individuals with autism spectrum disorder and intellectual disability. Journal of Intellectual Disability Research, 56(5), 476-489. https://doi.org/doi:10.1111/j.1365-2788.2012.01537.x
Rousseau, J. (2017). Modèles généraux en ergothérapie: Le Modèle de compétence. In M.-C. Morel-Bracq (Ed.), Les modèles conceptuels en ergothérapie-Introduction aux concepts fondamentaux (2 ed., pp. 107-119). De Boeck Supérieur.
Rousseau, J., Potvin, L., Dutil, E., & Falta, P. (2002). Model of Competence: A Conceptual Framework for Understanding the Person-Environment Interaction for Persons with Motor Disabilities. Occupational Therapy in Health Care, 16(1), 15-36. https://doi.org/doi:10.1080/J003v16n01_02
Stewart, C. R., Sanchez, S. S., Grenesko, E. L., Brown, C. M., Chen, C. P., Keehn, B., Velasquez, F., Lincoln, A. J., & Muller, R. A. (2016). Sensory Symptoms and Processing of Nonverbal Auditory and Visual Stimuli in Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 46(5), 1590-1601. https://doi.org/10.1007/s10803-015-2367-z
Stewart, D. W., & Shamdasani, P. N. (1990). Focus Group. Theory and Practice (Vol. 20). SAGE Publications.
Thorne, S. E. (2016). Interpretive description: qualitative research for applied practice (2 ed.). Routledge - Taylor & Francis. http://public.eblib.com/choice/publicfullrecord.aspx?p=4511832
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