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A Systematic Review of Factors Relating to Parental Satisfaction with the Diagnostic Process for Autism Spectrum Disorder

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Abstract

Diagnostic assessment for autism spectrum disorder (ASD) is a complex and often stressful process for parents. This systematic review synthesized results of 26 articles that reported on factors related to parental (dis)satisfaction with the diagnostic process for ASD. The results are described in terms of factors related to satisfaction and those related to dissatisfaction (with some overlap between these), in the context of temporality within the diagnostic process. Subsequently, factors are described in terms of those that can be directly influenced by clinicians and those that are outside of direct clinician control. Implications of the findings and directions for future research are provided.

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References

  • Abbott, M., Bernard, P., & Forge, J. (2012). Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents’ experiences. Clinical Child Psychology and Psychiatry, 18(3), 370–382. https://doi.org/10.1177/1359104512455813.

    Article  PubMed  Google Scholar 

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Author: Washington, D.C.

    Book  Google Scholar 

  • Andersson, G. W., Miniscalco, C., & Gillberg, C. (2014). Preschoolers assessed for autism: parent and teacher experiences of the diagnostic process. Research in Developmental Disabilities, 35, 3392–3402. https://doi.org/10.1177/1362361319833676.

    Article  PubMed  Google Scholar 

  • Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., … Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2014. Morbidity and mortality weekly report. Surveillance Summaries (Washington, D.C. : 2002), 67(6), 1–23. :https://doi.org/10.15585/mmwr.ss6706a1.

  • Brogan, C. A., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder: determinants of satisfaction in a sample of Scottish parents. Autism, 7(1), 31–46. https://doi.org/10.1177/1362361303007001004.

    Article  PubMed  Google Scholar 

  • Campbell, J. M., Ruble, L. A., & Hammond, R. K. (2014). Comprehensive developmental approach assessment model. In L. A. Wilkinson (Ed.), Autism spectrum disorder in children and adolescents: evidence-based assessment and intervention in schools. Washington DC: American Psychological Association.

    Google Scholar 

  • Centers for Disease Control and Prevention (2007). Prevalence of autism spectrum disorders – Autism and Developmental Disabilities Monitoring Network, six sites, United States, 2000. MMWR Surveillance Summaries, 56(SS01), 1–11.

  • Chamak, B., & Bonniau, B. (2013). Changes in the diagnosis of autism: how parents and professionals act and react in France. Culture, Medicine and Psychiatry, 37(3), 405–426. https://doi.org/10.1007/s11013-013-9323-1.

    Article  PubMed  Google Scholar 

  • Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15(1), 83–97. https://doi.org/10.1177/1362361309354756.

    Article  PubMed  Google Scholar 

  • Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism diagnosis in the United Kingdom: perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1.

    Article  PubMed  PubMed Central  Google Scholar 

  • Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & 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.

    Article  PubMed  Google Scholar 

  • Fernell, E., Eriksson, M. A., & Gillberg, C. (2013). Early diagnosis of autism and impact on prognosis: a narrative review. Clinical Epidemiology, 5, 33–43. https://doi.org/10.2147/CLEP.S41714.

    Article  PubMed  PubMed Central  Google Scholar 

  • Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439–451. https://doi.org/10.1177/1362361306066601.

    Article  PubMed  Google Scholar 

  • Hackett, L., Shaikh, S., & Theodosiou, L. (2009). Parental perceptions of the assessment of autistic spectrum disorders in a tier three service. Child and Adolescent Mental Health, 14(3), 127-132. : https://doi.org/10.1111/j.1475-3588.2008.00508.x.

  • Hidalgo, N. J., McIntyre, L. L., & McWhirter, E. H. (2015). Sociodemographic differences in parental satisfaction with an autism spectrum disorder diagnosis. Journal of Intellectual and Developmental Disability, 40(2), 147–155. https://doi.org/10.3109/13668250.2014.994171.

    Article  PubMed  Google Scholar 

  • Ho, H. H., Miller, A., & Armstrong, R. W. (1994). Parent-professional agreement on diagnosis and recommendations for children with developmental disorders. Children's Health Care, 23(2), 137–148. https://doi.org/10.1207/s15326888chc2302_6.

    Article  PubMed  Google Scholar 

  • Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41(12), 834–839.

    Article  Google Scholar 

  • Howlin, P., & Moore, A. (1997). Diagnosis in autism: a survey of over 1200 patients in the UK. Autism, 1(2), 135–162. https://doi.org/10.1177/1362361397012003.

    Article  Google Scholar 

  • Huws, J. C., Jones, R. S., & Ingledew, D. K. (2001). Parents of children with autism using an email group: a grounded theory study. Journal of Health Psychology, 6(5), 569–584.

    Article  Google Scholar 

  • Jashar, D. T., Fein, D., Berry, L. N., Burke, J. D., Miller, L. E., Barton, M. L., & Dumont-Mathieu, T. (2019). Parental perceptions of a comprehensive diagnostic evaluation for toddlers at risk for autism spectrum disorder. Journal of Autism and Developmental Disorders, 49(5), 1763–1777. https://doi.org/10.1007/s10803-018-3851-z.

    Article  PubMed  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. https://doi.org/10.1111/j.1468-3148.2010.00555.x.

    Article  Google Scholar 

  • Klin, A., Saulnier, C., Tsatsanis, K., & Volkmar, F. R. (2005). Clinical evaluation in autism spectrum disorders: psychological assessment within a transdisciplinary framework. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 772–798). Hoboken: Wiley.

    Chapter  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Midence, K., & O’neill, M. (1999). The experience of parents in the diagnosis of autism: a pilot study. Autism, 3(3), 273–285. https://doi.org/10.1177/1362361399003003005.

    Article  Google Scholar 

  • Minnes, P., & Steiner, K. (2009). Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome. Child: Care, Health and Development, 35(2), 250–256. https://doi.org/10.1111/j.1365-2214.2008.00931.x.

    Article  Google Scholar 

  • Moh, T. A., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 293–303. : https://doi.org/10.1016/j.rasd.2011.05.011.

  • Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & The PRISMA Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Medicine, 6(7), e1000097. https://doi.org/10.1371/journal.pmed1000097.

    Article  PubMed  PubMed Central  Google Scholar 

  • National Institute for Health and Care Excellence. Autism: recognition, referral and diagnosis of children and young people on the autism spectrum. (Clinical guideline 128.) 2011. http://guidance.nice.org.uk/CG128

  • National Research Council. (2001). Educating children with autism. In C. Lord & J. P. McGee (Eds.), Committee on educational interventions for children with autism (pp. 211–229). Washington, DC: National Academy Press.

    Google Scholar 

  • Potter, C. A. (2017). “I received a leaflet and that is all”: Father experiences of a diagnosis of autism. British Journal of Learning Disabilities, 45(2), 95–105. https://doi.org/10.1111/bld.12179.

    Article  Google Scholar 

  • Remington, B., Hastings, R. P., Kovshoff, H., degli Espinosa, F., Jahr, E., Brown, T., Alsford, P., Lemaic, M., & Ward, N. (2007). Early intensive behavioral intervention: outcomes for children with autism and their parents after two years. American Journal on Mental Retardation, 112(6), 418–438.

    Article  Google Scholar 

  • 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 and Development, 32(3), 371–385. https://doi.org/10.1111/j.1365-2214.2006.00584.x.

    Article  Google Scholar 

  • Richler, J., Huerta, M., Bishop, S., & Lord, C. (2010). Developmental trajectories of restricted and repetitive behaviours and interests in children with autism spectrum disorders. Development and Psychopathology, 22, 55–69. https://doi.org/10.1017/S0954579409990265.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ryan, S., & Salisbury, H. (2012). ‘You know what boys are like’: Pre-diagnosis experiences of parents of children with autism spectrum conditions. British Journal of General Practice, 62(598), e378–e383. https://doi.org/10.3399/bjgp12X641500.

    Article  Google Scholar 

  • Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child and Family Behavior Therapy, 19(4), 15–32. https://doi.org/10.1300/J019v19n04_02.

    Article  Google Scholar 

  • Sansosti, F. J., Lavik, K. B., & Sansosti, J. M. (2012). Family experiences through the autism diagnostic process. Focus on Autism and Other Developmental Disabilities, 27(2), 81–92. https://doi.org/10.1177/1088357612446860.

    Article  Google Scholar 

  • Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119(supplement 1), S114–S121.

    Article  Google Scholar 

  • Shea, B., & Mesibov, G. (2009). Age-related issues in the assessment of autism spectrum disorders. In S. Goldstein, J. Naglieri, & S. Ozonoff (Eds.), Assessment of autism spectrum disorder (pp. 117–137). New York: Guilford.

    Google Scholar 

  • Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, 28(1), 9–22. https://doi.org/10.1016/j.ridd.2005.09.003.

    Article  PubMed  Google Scholar 

  • Szatmari, P., Merette, C., Bryson, S. E., Thivierge, J., Roy, M., Cayer, M., & Maziade, M. (2002). Quantifying dimensions in autism: a factor-analytic study. Journal of the American Academy of Child and Adolescent Psychiatry, 41(4), 467–474. https://doi.org/10.1097/00004583-200204000-00020.

    Article  PubMed  Google Scholar 

  • Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., & State M & American Academy of Child and Adolescent Psychiatry (AACAP) Committee on Quality Issues (CQI). (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 53, 237–257. https://doi.org/10.1016/j.jaac.2013.10.013.

    Article  PubMed  Google Scholar 

  • Whitaker, P. (2002). Supporting families of preschool children with autism: what parents want and what helps. Autism, 6(4), 411–426. https://doi.org/10.1177/1362361302006004007.

    Article  PubMed  Google Scholar 

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Correspondence to Adam W. McCrimmon.

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McCrimmon, A.W., Gray, S.M. A Systematic Review of Factors Relating to Parental Satisfaction with the Diagnostic Process for Autism Spectrum Disorder. Rev J Autism Dev Disord 8, 334–349 (2021). https://doi.org/10.1007/s40489-020-00224-9

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  • DOI: https://doi.org/10.1007/s40489-020-00224-9

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