Abstract
Parents are valuable stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). Little is known, however, about how parents view and experience an ASD diagnosis. We investigated the evolution of parents’ views and experiences of the ASD diagnosis before, right after and 12 months after their child was diagnosed. Seventeen Flemish parents waiting for their young child’s diagnostic ASD assessment participated in a longitudinal study consisting of three in-depth interviews. They described their views and experiences concerning their child’s ASD diagnosis at three separate moments: (T1) prior to a diagnostic ASD assessment; (T2) immediately after their final feedback session at the end of the assessment; and (T3) 12 months later. Interviews were digitally recorded, transcribed and analysed in Nvivo 11 according to the procedures of interpretative phenomenological analysis. We extracted three themes from the interview material throughout the parental journey: (T1) expecting certainty and exculpation; (T2) vulnerabilisation of the child; and (T3) pragmatic attitude and some disappointment. At T3, the parents overall had come to value the diagnosis because of two reasons: they were satisfied with their child’s entitlement to ASD-related support at school, and with the diagnosis’ impact on the child’s relationships with parents and teachers. Many parents experienced their child with an ASD diagnosis as vulnerable, and themselves as acutely responsible for his development and future. Our findings may lead to a higher satisfaction with the clinical trajectory in both clinician and parents by inspiring a conversation between them about parents’ evolving views, hopes and concerns related to their child’s ASD diagnosis.
Similar content being viewed by others
Notes
Sib + parents often had already experienced these same pragmatic benefits of the diagnosis with their older child with an ASD diagnosis.
This was the case for both Sib + and Sib − parents because when Sib + parents talked about this evolution they conflated their experiences with both the concerned child and their older child(ren) with an ASD diagnosis.
ASD is often viewed as a disability (Baron-Cohen 2002).
Parents’ ‘backward-looking’ responsibility, consisting of accountability and blameworthiness, was replaced by a ‘forward-looking’ responsibility, “that of seeing to it that a certain state of affairs obtain” (Goodin in [67], p. 37), in this case for taking care of the child’s vulnerability.
Abbreviations
- ADHD:
-
Attention deficit and hyperactivity disorder
- ASD:
-
Autism spectrum disorder
- DSM:
-
Diagnostic and statistical manual of mental disorders
- ID:
-
Intellectual disability
- IPA:
-
Interpretative phenomenological analysis
References
Abbott M, Bernard P, Forge J (2013) Communicating a diagnosis of Autism spectrum disorder—a qualitative study of parents’ experiences. Clin Child Psychol Psychiatry 18(3):370–382
American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders, 5th edn, 4th edn, vol 1. http://www.psychiatryonline.com/resourceTOC.aspx?resourceID=1. Accessed 5 May 2019
Avdi E (2005) Negotiating a pathological identity in the clinical dialogue: discourse analysis of a family therapy. Psychol Psychother Theory Res Pract 78(4):493–511. https://doi.org/10.1348/147608305X52586
Avdi E, Griffin C, Brough S (2000) Parents’ constructions of the ‘problem’ during assessment and diagnosis of their child for an autistic spectrum disorder. J Health Psychol 5(2):241–254. https://doi.org/10.1177/135910530000500214
Bakan MB (2018) Music and Autism, representation and re-presentation: an ethnomusicological perspective. In: Fein E, Rios C (eds) Autism in translation: an intercultural conversation on autism spectrum conditions. Springer, Berlin, pp 109–128. https://doi.org/10.1007/978-3-319-93293-4_5
Barbour RS (2001) Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ 322(7294):1115. https://doi.org/10.1136/bmj.322.7294.1115
Bonis S (2016) Stress and Parents of children with autism: a review of literature. Issues Ment Health Nurs 37(3):153–163. https://doi.org/10.3109/01612840.2015.1116030
Carlsson E, Miniscalco C, Kadesjö B, Laakso K (2016) Negotiating knowledge: parents’ experience of the neuropsychiatric diagnostic process for children with autism. Int J Lang Commun Disord R Coll Speech Lang Ther 51(3):328–338. https://doi.org/10.1111/1460-6984.12210
Carter N, Bryant-Lukosius D, DiCenso A, Blythe J, Neville AJ (2014) The use of triangulation in qualitative research. Oncol Nurs Forum 41:5
Cascio MA (2018) What are we talking about when we talk about autism? In: Fein E, Rios C (eds) Autism in translation: an intercultural conversation on autism spectrum disorders. Springer, Berlin. https://doi.org/10.1007/978-3-319-93293-4_12
Crane L, Chester JW, Goddard L, Henry LA, Hill E (2016) Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom. Autism 20(2):153–162. https://doi.org/10.1177/1362361315573636
Currenti SA (2010) Understanding and determining the etiology of autism. Cell Mol Neurobiol 30(2):161–171. https://doi.org/10.1007/s10571-009-9453-8
De Jaegher H (2013) Embodiment and sense-making in autism. Front Integr Neurosci. https://doi.org/10.3389/fnint.2013.00015
DePape A-M, Lindsay S (2015) Parents’ Experiences of caring for a child with autism spectrum disorder. Qual Health Res 25(4):569–583. https://doi.org/10.1177/1049732314552455
Departement Onderwijs en Vorming, Vlaanderen (2014) UPDATE: M-decreet. Maatregelen voor leerlingen met specifieke onderwijsbehoeften. https://www.vlaanderen.be/publicaties/update-m-decreet. Accessed 15 May 2019
Dermott E (2016) Doing Good parenthood: reflexivity, practices, and relationships. In: Sparrman A, Westerling A, Lind J, Dannesboe KI (eds) Doing good parenthood: ideals and practices of parental involvement. Springer, Berlin, pp 137–147. https://doi.org/10.1007/978-3-319-46774-0_12
Elliott C (1999) A Philosophical disease: bioethics, culture, and identity. Routledge, New York
Emanuel EJ, Emanuel LL (1992) Four models of the physician-patient relationship. J Am Med Assoc 267(16):2221–2226. https://doi.org/10.1001/jama.1992.03480160079038
Fein E, Rios C (2018) Autism in translation—an intercultural conversation on autism spectrum conditions. Palgrave Macmillan, Cham
Gillberg C, Fernell E (2014) Autism plus versus autism pure. J Autism Dev Disord 44(12):3274–3276. https://doi.org/10.1007/s10803-014-2163-1
Gray DE (2001) Accommodation, resistance and transcendence: three narratives of autism. Soc Sci Med 53(9):1247–1257. https://doi.org/10.1016/S0277-9536(00)00424-X
Hennel S, Coates C, Symeonides C, Gulenc A, Smith L, Price AMH, Hiscock H (2016) Diagnosing autism: contemporaneous surveys of parent needs and paediatric practice. J Paediatr Child Health 52(5):506–511. https://doi.org/10.1111/jpc.13157
Hens K, Van Goidsenhoven L (2017) Autism, genetics and epigenetics. Why the lived experience matters. BioSocieties 929
Huffman LC (2018) Shared Decision making in the care of children with autism spectrum disorder. J Dev Behav Pediatr 39(4):343. https://doi.org/10.1097/DBP.0000000000000582
Hyman SE (2010) The diagnosis of mental disorders: the problem of reification. Annu Rev Clin Psychol 6(1):155–179. https://doi.org/10.1146/annurev.clinpsy.3.022806.091532
Insel T, Cuthbert B, Garvey M, Heinssen R, Pine DS, Quinn K et al (2010) Research Domain criteria (RDoC): toward a new classification framework for research on mental disorders. Am J Psychiatry 167(7):748–751. https://doi.org/10.1176/appi.ajp.2010.09091379
Jaarsma P, Welin S (2012) Autism as a Natural human variation: reflections on the claims of the neurodiversity movement. HCA 20(1):20–30. https://doi.org/10.1007/s10728-011-0169-9
Jacobs D, Hens K (2018) Love, neuro-parenting and autism: from individual to collective responsibility towards parents and children. Anal J Gend Fem Stud 11(25):102–124
Jacobs D, Hens K, Steyaert J, Dierickx K (under review) The conceptualisation of autism by parents and clinicians—a review of empirical studies with clinical-ethical implications
Jacobs D, Steyaert J, Dierickx K, Hens K (under review) The journey towards a diagnostic assessment of autism spectrum disorder: an interview study of parents’ experiences
Jacobs D, Steyaert J, Dierickx K, Hens K (2018) Implications of an autism spectrum disorder diagnosis: an interview study of how physicians experience the diagnosis in a young child. J Clin Med 7(10):348. https://doi.org/10.3390/jcm7100348
Jacobs D, Steyaert J, Dierickx K, Hens K (2019) Physician view and experience of the diagnosis of autism spectrum disorder in young children. Front Psychiatry 10:372. https://doi.org/10.3389/fpsyt.2019.00372
Lai M-C, Lombardo MV, Baron-Cohen S (2014) Autism. Lancet 383(9920):896–910. https://doi.org/10.1016/S0140-6736(13)61539-1
Landsman G (2005) Mothers and models of disability. J Med Hum 26(2–3):121–139. https://doi.org/10.1007/s10912-005-2914-2
Lebowitz MS, Rosenthal JE, Ahn W (2016) Effects of biological versus psychosocial explanations on stigmatization of children with ADHD. J Atten Disord 20(3):240–250. https://doi.org/10.1177/1087054712469255
Legg H, Tickle A (2019) UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder: a systematic review of the qualitative evidence. Autism. https://doi.org/10.1177/1362361319841488
Lord C, Elsabbagh M, Baird G, Veenstra-Vanderweele J (2018) Autism spectrum disorder. Lancet 392(10146):508–520. https://doi.org/10.1016/S0140-6736(18)31129-2
Loughman A, Haslam N (2018) Neuroscientific explanations and the stigma of mental disorder: a meta-analytic study. Cognit Res Princip Impl 3(1):43. https://doi.org/10.1186/s41235-018-0136-1
Macneil CA, Hasty MK, Conus P, Berk M (2012) Is diagnosis enough to guide interventions in mental health? Using case formulation in clinical practice. BMC Med 10:111. https://doi.org/10.1186/1741-7015-10-111
Mandy W (2018) The research domain criteria: a new dawn for neurodiversity research? Autism 22(6):642–644. https://doi.org/10.1177/1362361318782586
Mansell W, Morris K (2004) A survey of parents’ reactions to the diagnosis of an autistic spectrum disorder by a local service. Access to information and use of services. Autism 8(4):387–407. https://doi.org/10.1177/1362361304045213
Mason M (2010) Sample size and saturation in PhD studies using qualitative interviews. Forum Qualitative Sozialforschung/Forum Qual Soc Res 11(3). http://www.qualitative-research.net/index.php/fqs/article/view/1428
Mercer L, Creighton S, Holden JJA, Lewis MES (2006) Parental perspectives on the causes of an autism spectrum disorder in their children. J Genet Counsel 15(1):41–50. https://doi.org/10.1007/s10897-005-9002-7
Mezzich JE, Salloum IM, Cloninger CR, Salvador-Carulla L, Kirmayer LJ, Banzato CE et al (2010) Person-centred integrative diagnosis: conceptual bases and structural model. Can J Psychiatry 55(11):701–708. https://doi.org/10.1177/070674371005501103
Mintz ME (2018) A parent-centered approach to autism diagnosis in early childhood. World J Pediatr. https://doi.org/10.1007/s12519-018-0154-6
Molloy H, Vasil L (2002) The social construction of asperger syndrome: the pathologising of difference? Disabil Soc 17(6):659–669. https://doi.org/10.1080/0968759022000010434
Monteiro SA, Spinks-Franklin A, Treadwell-Deering D, Berry L, Sellers-Vinson S, Smith E et al (2015) Prevalence of Autism spectrum disorder in children referred for diagnostic autism evaluation. Clin Pediatr 54(14):1322–1327. https://doi.org/10.1177/0009922815592607
Neely-Barnes SL, Hall HR, Roberts RJ, Graff JC (2011) Parenting a child with an autism spectrum disorder: public perceptions and parental conceptualizations. J Fam Soc Work 14(3):208–225. https://doi.org/10.1080/10522158.2011.571539
Ooi KL, Ong YS, Jacob SA, Khan TM (2016) A meta-synthesis on parenting a child with autism. Neuropsychiatr Dis Treat 12:745–762. https://doi.org/10.2147/NDT.S100634
Osborne LA, McHugh L, Saunders J, Reed P (2008) A possible contra-indication for early diagnosis of Autistic Spectrum Conditions: impact on parenting stress. Res Autism Spectr Disord 2(4):707–715. https://doi.org/10.1016/j.rasd.2008.02.005
Perkins A, Ridler J, Browes D, Peryer G, Notley C, Hackmann C (2018) Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings. Lancet Psychiatry 5(9):747–764. https://doi.org/10.1016/S2215-0366(18)30095-6
Pietkiewicz I, Smith J (2014) A practical guide to using interpretative phenomenological analysis in qualitative research psychology. Psychol J 20(1):7–14. https://doi.org/10.14691/CPPJ.20.1.7
Poslawsky IE, Naber FB, Van Daalen E, Van Engeland H (2014) Parental reaction to early diagnosis of their children’s autism spectrum disorder: an exploratory study. Child Psychiatry Hum Dev 45(3):294–305. https://doi.org/10.1007/s10578-013-0400-z
Ramaekers S, Suissa J (2011) Parents as ‘educators’: languages of education, pedagogy and ‘parenting’. Ethics Educ 6(2):197–212. https://doi.org/10.1080/17449642.2011.623002
Renty J, Roeyers H (2006) Satisfaction with formal support and education for children with autism spectrum disorder: the voices of the parents. Child Care Health 32(3):371–385
Rossi N (2012) The production of autism diagnoses within an institutional network: towards a theory of diagnosis. Unpublished PhD Dissertation, Columbia University
Russell G, Kelly SE, Ford T, Steer C (2012) Diagnosis as a social determinant: the development of prosocial behaviour before and after an autism spectrum diagnosis. Soc Sci Med 75(9):1642–1649. https://doi.org/10.1016/j.socscimed.2012.06.019
Russell G, Norwich B (2012) Dilemmas, diagnosis and de-stigmatization: parental perspectives on the diagnosis of autism spectrum disorders. Clin Child Psychol Psychiatry 17(2):229–245. https://doi.org/10.1177/1359104510365203
Saldaña J (2003) Longitudinal qualitative research: analyzing change through time. AltaMira, Lanham
Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B et al (2018) Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant 52(4):1893–1907. https://doi.org/10.1007/s11135-017-0574-8
Scheff TJ (1974) The labelling theory of mental illness. Am Sociol Rev 39(3):444–452. https://doi.org/10.2307/2094300
Shenton AK (2004) Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf 22(2):63–75. https://doi.org/10.3233/EFI-2004-22201
Singh JS (2016) Parenting work and autism trajectories of care. Sociol Health Illn 38(7):1106–1120. https://doi.org/10.1111/1467-9566.12437
Smith JA, Flowers P, Larkin M (2009) Interpretative phenomenological analysis: theory, method and research, Reprint edn. SAGE, Los Angeles
Thomson R, Holland J (2003) Hindsight, foresight and insight: the challenges of longitudinal qualitative research. Int J Soc Res Methodol 6(3):233–244. https://doi.org/10.1080/1364557032000091833
Thomson R, McLeod J (2015) New frontiers in qualitative longitudinal research: an agenda for research. Int J Soc Res Methodol 18(3):243–250. https://doi.org/10.1080/13645579.2015.1017900
van de Poel I (2011) The Relation Between Forward-Looking and Backward-Looking Responsibility. In: Vincent NA, van de Poel I, van den Hoven J (eds) Moral responsibility: beyond free will and determinism. Springer, Berlin, pp 37–52. https://doi.org/10.1007/978-94-007-1878-4_3
Waltz MM (2015) Mothers and autism: the evolution of a discourse of blame. AMA J Ethics 17(4):353. https://doi.org/10.1001/journalofethics.2015.17.4.mhst1-1504
Weisner T (2018) Psychological anthropology and the study of disability. In: Fein E, Rios C (eds) Autism in translation: an intercultural conversation on autism spectrum disorders. Springer, Berlin, pp 263–282. https://doi.org/10.1007/978-3-319-93293-4_4
Zwaigenbaum L, Bauman ML, Stone WL, Yirmiya N, Estes A, Hansen RL et al (2015) Early identification of autism spectrum disorder: recommendations for practice and research. Pediatrics 136(Supplement 1):S10–S40. https://doi.org/10.1542/peds.2014-3667C
Acknowledgements
We thank the interviewed parents for their time and for openly sharing their experiences.
Funding
D.J. received funding from the Leuven University Fund, grant ‘Opening the future’. K.H. received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement number 804881).
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Ethics approval
The authors assert that all procedures contributing to this work comply with the Helsinki Declaration of 1975, as revised in 2008. All procedures involving human subjects were approved by the Ethics Committee of the University Hospitals Leuven (Belgian Registration Number B322201731147).
Informed consent
Written informed consent was obtained from all subjects prior to their inclusion in the study, and to its publication.
Electronic supplementary material
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Jacobs, D., Steyaert, J., Dierickx, K. et al. Parents’ views and experiences of the autism spectrum disorder diagnosis of their young child: a longitudinal interview study. Eur Child Adolesc Psychiatry 29, 1143–1154 (2020). https://doi.org/10.1007/s00787-019-01431-4
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00787-019-01431-4