The purpose of this article is to systematically identify, appraise and synthesise qualitative research concerning UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder. In total, 11 articles were located through a systematic search of five databases, reference lists, citations and grey literature. These were critically appraised and their results synthesised using meta-ethnography. The quality scores given to included studies were variable, so suggestions are made to improve reporting of future research. Three third-order constructs were developed: (1) emotional needs, (2) informational needs and (3) relational needs. Each relates to parents’ needs as they navigate the process of making sense of their child by seeking and adjusting to a diagnosis of autism spectrum disorder. Parents’ experiences of assessment and diagnosis of their children varied, but these needs were evident across the course of the process. Fathers seemed to find it more difficult than mothers to reconcile having a child with autism spectrum disorder, which may have been grounded in a sense of exclusion from the assessment process. The findings should be considered by professionals working with children, particularly those directly involved in diagnosing autism spectrum disorder. Clinical implications emphasise the need for consideration of parents’ emotional needs, provision of information to aid understanding, and strong relationships with professionals. Future clinical research, which should be informed by quality standards, might develop and evaluate standards of assessment and diagnosis, including post-diagnostic support.
*AbbottM.BernardP.ForgeJ. (2013). Communicating a diagnosis of autism spectrum disorder–A qualitative study of parents’ experiences. Clinical Child Psychology and Psychiatry, 18, 370–382.
2.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5). Washington DC: Author.
3.
AtwoodJ. D.GalloC. (2010). Family therapy and chronic illness. Piscataway, NJ: Transaction Publishers.
4.
*AvdiE.GriffinC.BroughS. (2000). Parents’ constructions of professional knowledge, expertise and authority during assessment and diagnosis of their child for an autistic spectrum disorder. Psychology and Psychotherapy: Theory, Research and Practice, 73, 327–338.
5.
BairdG.SimonoffE.PicklesA.ChandlerS.LoucasT.MeldrumD.CharmanT. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The special needs and autism project (SNAP). The Lancet, 368, 210–215.
6.
Baron-CohenS.ScottF. J.AllisonC.WilliamsJ.BoltonP.MatthewsF. E.BrayneC. (2009). Prevalence of autism-spectrum conditions: UK school-based population study. The British Journal of Psychiatry: The Journal of Mental Science, 194, 500–509.
7.
BossP. (2004). Ambiguous loss research, theory, and practice: Reflections after 9/11. Journal of Marriage and Family, 66, 551–566.
8.
*BraidenH.BothwellJ.DuffyJ. (2010). Parents’ experience of the diagnostic process for autistic spectrum disorders. Child Care in Practice, 16, 377–389.
9.
BrettD.WarnellF.McConachieH.ParrJ. R. (2016). Factors affecting age at ASD diagnosis in UK: No evidence that diagnosis age has decreased between 2004 and 2014. Journal of Autism and Developmental Disorders, 46, 1974–1984.
10.
BrittenN.CampbellR.PopeC.DonovanJ.MorganM.PillR. (2002). Using meta ethnography to synthesise qualitative research: A worked example. Journal of Health Services Research & Policy, 7, 209–215.
11.
CampbellR.PoundP.PopeC.BrittenN.PillR.MorganM.DonovanJ. (2003). Evaluating meta-ethnography: A synthesis of qualitative research on lay experiences of diabetes and diabetes care. Social Science & Medicine, 56, 671–684.
12.
CarrollC.BoothA. (2015). Quality assessment of qualitative evidence for systematic review and synthesis: Is it meaningful, and if so, how should it be performed?Research Synthesis Methods, 6, 149–154.
13.
ChuaA. (2012). Parental experience of having a child diagnosed with autism spectrum disorder: An integrative literature review. Singapore Nursing Journal, 39, 8–18.
14.
*CraigR. (2015). ‘I don’t know what’s the Asperger’s and what’s me’: An interpretive phenomenological analysis exploration of young people and mother’s experiences of receiving and living with an autism spectrum condition diagnosis during adolescence (Doctoral thesis), University of Glasgow, Glasgow, Scotland. Retrieved from http://theses.gla.ac.uk/6702/
*EvansA. (2010). Parent’s responses to their child’s diagnosis of autism spectrum disorder (ASD) (Master’s thesis), University of Southampton, UK. Retrieved from https://eprints.soton.ac.uk/172757/
*GriffithG. M.Walker-JonesE.FitzpatrickH.GoodsonL.PickeringN.WimporyD.HastingsR. P. (2013). Receiving an assessment and a potential diagnosis on the autism spectrum: A thematic content analysis of parental experiences. Good Autism Practice (GAP), 14, 59–68.
19.
HintonC. E.WolpertM. (1998). Why is ADHD such a compelling story?Clinical Child Psychology and Psychiatry, 3, 315–317.
20.
HornbyG. (1995). Fathers’ views of the effects on their families of children with Down syndrome. Journal of Child and Family Studies, 4, 103–117.
21.
HowlinP.MooreA. (1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism, 1, 135–162.
22.
JonesT. L.PrinzR. J. (2005). Potential roles of parental self-efficacy in parent and child adjustment: A review. Clinical Psychology Review, 25, 341–363.
23.
KappS. K.Gillespie-LynchK.ShermanL. E.HutmanT. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49, 59–71.
24.
KleinertH. L.LunneyC. A.CampbellL.FergusonJ. E. (2009). Improving residents’ understanding of issues, comfort levels, and patient needs regarding screening for and diagnosing down syndrome. American Journal of Obstetrics and Gynecology, 201, 328. e1–e6.
25.
Le CouteurA. (2003). National autism plan for children (NAPC): Plan for the identification, assessment, diagnosis and access to early interventions for pre-school and primary school aged children with autism spectrum disorders. London, England: National Autistic Society.
26.
LordC. (2000). Commentary: Achievements and future directions for intervention research in communication and autism spectrum disorders. Journal of Autism and Developmental Disorders, 30, 393–398.
27.
MalpassA.ShawA.SharpD.WalterF.FederG.RiddM.KesslerD. (2009). ‘Medication career’ or ‘Moral career’? The two sides of managing antidepressants: A meta-ethnography of patients’ experience of antidepressants. Social Science & Medicine, 68, 154–168.
28.
MaxwellJ. A.MittapalliK. (2007). The value of critical realism for qualitative research. International Association for Critical Realism, 13, 1–13.
29.
*MidenceK.O’NeillM. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3, 273–285.
30.
MoherD.LiberatiA.TetzlaffJ.AltmanD. G.GroupT. P. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement (Reprinted from annals of internal medicine). Physical Therapy, 89, 873–880.
31.
MukherjeeS.SloperP.BeresfordB.LundP. (1999). Implementing key worker services: A case study of promoting evidence-based practice. Retrieved from http://eprints.whiterose.ac.uk/75152/
32.
National Institute for Health and Care Excellence. (2011). Autism spectrum disorder in under 19s: Recognition, referral and diagnosis. Retrieved from https://www.nice.org.uk/guidance/cg128
33.
NissenbaumM. S.TollefsonN.ReeseR. M. (2002). The interpretative conference: Sharing a diagnosis of autism with families. Focus on Autism and Other Developmental Disabilities, 17, 30–43.
NorwichB. (2008). Dilemmas of difference, inclusion and disability: International perspectives on placement. European Journal of Special Needs Education, 23, 287–304.
36.
O’BrienM. (2007). Ambiguous loss in families of children with autism spectrum disorders. Family Relations, 56, 135–146.
37.
OrenC. Z.Egar-CarsonM.StevensM. A.OrenD. C. (2010). Counseling fathers from a strengths-based perspective. In OrenC. Z.OrenD. C. (Eds.), Counseling fathers (pp. 23–47). New York, NY: Routledge.
38.
*OsborneL. A.ReedP. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12, 309–324.
39.
*PotterC. A. (2017). ‘I received a leaflet and that is all’: Father experiences of a diagnosis of autism. British Journal of Learning Disabilities, 45, 95–105.
RingN.RitchieK.MandavaL.JepsonR. (2010). A guide to synthesising qualitative research for researchers undertaking health technology assessments and systematic reviews. Glasgow, UK: NHS Quality Improvement Scotland.
*RussellG.NorwichB. (2012). Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychology and Psychiatry, 17, 229–245.
44.
SandelowskiM.DochertyS.EmdenC. (1997). Focus on qualitative methods Qualitative metasynthesis: Issues and techniques. Research in Nursing & Health, 20, 365–372.
45.
ScheffT. J. (1974). The labelling theory of mental illness. American Sociological Review, 39, 444–452.
46.
Scottish Intercollegiate Guidelines Network. (2016). SIGN 145: Assessment, diagnosis and interventions for autism spectrum disorders: A national clinical guideline. Retrieved from https://www.sign.ac.uk/assets/sign145.pdf
47.
*SlatorL. (2012). An exploration of parental narratives in the context of a child’s diagnosis of autism spectrum disorder (Doctoral thesis), University of Canterbury, UK. Retrieved from http://create.canterbury.ac.uk/11118/
48.
TowersC. (2009). Recognising fathers: A national survey of fathers who have children with learning disabilities. London, England: Foundation for People with Learning Disabilities.
49.
World Health Organization. (2018). International statistical classification of diseases and related health problems, 11th revision. Geneva, Switzerland: Author. Retrieved from https://icd.who.int/browse11/l-m/en
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