Parents’ Perspectives Towards the Diagnosis of Autism: An Italian Case Study Research
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We investigated the parental changes and challenges that anticipated and followed the communication of the diagnosis of autism. The methodology was a collaborative and participatory case study focused on the perceptions of 31 families with a child on the autism spectrum enrolled in a no-profit Association in the Province of Monza and Brianza (Italy). The aim of the research was collecting information for the establishment of a local permanent observatory, monitoring the needs of families with children with autism, and identifying possible operational proposals to implement the quality of the territorial services, through the enhancement of the experiences, perceptions and representations of families, analysing their points of view. Methods included semi structured interviews and questionnaires; the data were analysed through the interpretative phenomenological analysis method. The findings show that parents need to be supported in order to avoid crisis and confusion on the child’s future perspectives, as consequence of the diagnosis of autism. The paper draws out implications for further studies that wish to analyse other family perspectives.
KeywordsAutism spectrum conditions Diagnosis Family Association Case study research Interpretative phenomenological analysis
This research was only possibly due to the funding of ‘Fondazione Cariplo’. The researchers would like to offer profound gratitude to all parents, children and professionals of the association ‘Cascina San Vincenzo’ that participated in this project, and to the research team of the Research Centre on Disability and Marginality (CeDisMa).
- Atkinson, R. (2002). L’intervista narrativa. Raccontare la storia di sé nella ricerca formativa, organizzativa e sociale. Milano: Raffaello Cortina.Google Scholar
- Autism Europe (Ed). (2001). Autism and family needs. European Commission’s non-discrimination programme ‘For Diversity, Against Discrimination’. Bruxelles: Autism Europe. http://www.autismeurope.org/files/files/familyneeds-eng2.pdf.
- Brennan, K. (2011). When words fail; an explorative study of the experiences and impacts on families living with a child diagnosed with autism spectrum disorder. (Unpublished bachelor’s thesis). Dublin: Dublin Business School. http://esource.dbs.ie/bitstream/handle/10788/195/ba_brennan_k_2011.pdf?sequence=1.
- Callini, D. (2003). Su misura. Fabbisogni di professionalità e di competenze. Roma: Franco Angeli.Google Scholar
- Greeff, A.P., & Van der Walt, K.J. (2010). Resilience in families with an autistic child. Journal of Pediatric, Maternal & Family Health-Chiropractic, 45(3): 347. http://www.daddcec.org/Portals/0/CEC/Autism_Disabilities/Research/Publications/Education_Training_Development_Disabilities/Full_Journals/ETDD201009V45n3.pdf#page=30.
- Hastings, R. P. (2008). Stress in parents of children with autism. In E. McGregor, M. Nunez, K. Williams, & J. Gomez (Eds.), Autism: An integrated view (pp. 303–324). Oxford: Blackwell.Google Scholar
- Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390–397. doi: 10.1111/j.1468-3148.2010.00555.x.CrossRefGoogle Scholar
- Maggiolini, S. (2011). Le sindromi genetiche rare. Percorsi educativi. Bergamo: Edizioni Junior.Google Scholar
- Mandell, D.S. (2012). Understanding and addressing the impact of autism on the family. Leonard Davis Institute of Health Economics Issue Brief, 17: 1–4. http://ldihealtheconomist.com/media/understanding_and_addressing_the_impact_of_autism_on_the_family.pdf.
- Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache”: Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3(3), 670–684. doi: 10.1016/j.rasd.2009.01.004.CrossRefGoogle Scholar
- Nuner, J.E., Griffith, C. (2011). Early signs of autism: How to support families navigate and referral procedures. Dimensions of Early Childhood, 39(1): 12–20. http://www.southernearlychildhood.org/upload/file/Index%20-%20Volume%2039.pdf.
- Ozonoff, S., Dawson, G., & McPartland, J. (2002). A parent’s guide to Asperges syndrome and high-functioning autism: How to meet the challenges and help your child thrive. New York: Guilford Press.Google Scholar
- Plumb, J.C. (2011). The impact of social support and family resilience on parental stress in families with a child diagnosed with an autism spectrum disorder (Unpublished doctoral dissertation). Philadelphia: University of Pennsylvania. http://repository.upenn.edu/edissertations_sp2/14/.
- Pozo, P., Sarriá, E., Brioso, A. (2011). Psychological adaptation in parents of children with autism spectrum disorders. In M. Mohammadi, (Ed.), A comprehensive book on autism spectrum disorders (107–130). doi: 10.5772/18705.
- Reid, K., Paul, F., Michael, L. (2005). Exploring lived experience. Psychologist, 18(1): 20–23. http://www.thepsychologist.org.uk/archive/archive_home.cfm/volumeID_18-editionID_114-ArticleID_798-getfile_getPDF/thepsychologist%5C0105reid.pdf.
- Riddick, B. (2008). Parents’ perspectives on receiving, searching for and evaluating information relating to autism spectrum disorders: Sorting the wheat from the chaff. Good Autism Practice, 9(1): 58–64. http://www.ingentaconnect.com/content/bild/gap/2008/00000009/00000001.
- Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage.Google Scholar
- Stake, R. E. (2005). The art of case study research. London: Sage.Google Scholar