Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
Abstract
Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015–2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of the level of satisfaction. These findings highlight the aspects of the process that need to be improved to enhance the experience of the detection process and are therefore relevant to guide health administrations toward actions to be implemented to this effect.
Lay abstract
Professional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one’s own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent–professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.
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References
Azen R., Traxel N. (2009). Using dominance analysis to determine predictor importance in logistic regression. Journal of Educational and Behavioral Statistics, 34(3), 319–347. https://doi.org/10.3102/1076998609332754
Bejarano-Martín Á., Canal-Bedia R., Magán-Maganto M., Fernández-Álvarez C., Cilleros-Martín M. V., Sánchez-Gómez M. C., García-Primo P., Rose-Sweeney M., Boilson A., Linertová R., Roeyers H., Van der Paelt S., Schendel D., Warberg C., Cramer S., Narzisi A., Muratori F., Scattoni M. L., Moilanen I., . . . Posada de la Paz M. (2020). Early detection, diagnosis and intervention services for young children with Autism Spectrum Disorder in the European Union (ASDEU): Family and professional perspectives. Journal of Autism and Developmental Disorders, 50(9), 3380–3394. https://doi.org/10.1007/s10803-019-04253-0
Bent C. A., Barbaro J., Dissanayake C. (2020). Parents’ experiences of the service pathway to an autism diagnosis for their child: What predicts an early diagnosis in Australia?. Research in Developmental Disabilities, 103, Article 103689. https://doi.org/10.1016/j.ridd.2020.103689
Boshoff K., Gibbs D., Phillips R. L., Wiles L., Porter L. (2018). A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis. Health & Social Care in the Community, 27, e143–e157. https://doi.org/10.1111/hsc.12691
Broder Fingert S., Carter A., Pierce K., Stone W. L., Wetherby A., Scheldrick C., Smith C., Bacon E., James S. N., Ibañez L., Feinberg E. (2018). Implementing systems-based innovations to improve access to early screening, diagnosis, and treatment services for children with autism spectrum disorder: An Autism Spectrum Disorder Pediatric, Early Detection, Engagement, and Services network study. Autism, 23, 653–664. https://doi.org/10.1177/1362361318766238
Brogan C. A., Knussen C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder. Autism, 7(1), 31–46. https://doi.org/10.1177/1362361303007001004
Carlsson E., Miniscalco C., Kadesjö B., Laakso K. (2016). Negotiating knowledge: Parents’ experience of the neuropsychiatric diagnostic process for children with autism. International Journal of Language and Communication Disorders, 51(3), 328–338. https://doi.org/10.1111/1460-6984.12210
Caronna E. B., Augustyn M., Zuckerman B. (2007). Revisiting parental concerns in the age of autism spectrum disorders. Archives of Pediatrics & Adolescent Medicine, 161(4), Article 406. https://doi.org/10.1001/archpedi.161.4.406
Chamak B., Bonniau B., Oudaya L., Ehrenberg A. (2011). The autism diagnostic experiences of French parents. Autism: The International Journal of Research and Practice, 15(1), 83–97. https://doi.org/10.1177/1362361309354756
Crais E. R., McComish C. S., Humphreys B. P., Watson L. R., Baranek G. T., Reznick J. S., Christian R. B., Earls M. (2014). Pediatric healthcare professionals’ views on autism spectrum disorder screening at 12–18 months. Journal of Autism and Developmental Disorders, 44(9), 2311–2328. https://doi.org/10.1007/s10803-014-2101-2
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
Daniels A., Halladay A. K., Shih A., Elder L. M., Dawson G. (2014). Approaches to enhancing the early detection of autism spectrum disorders: A systematic review of the literature. Journal of the American Academy of Child and Adolescent Psychiatry, 53(2), 141–152. https://doi.org/10.1016/j.jaac.2013.11.002
Daniels A. M., Mandell D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, 18(5), 583–597. https://doi.org/10.1177/1362361313480277
Daniels N. F., Coughlan B., Duschinsky R. (2021). How UK health care professionals conceptualise parental experiences of the diagnostic process for autism spectrum disorder: A qualitative study. SAGE Open Medicine, 9, Article 205031212110313. https://doi.org/10.1177/20503121211031310
DesChamps T. D., Ibañez L. V., Edmunds S. R., Dick C. C., Stone W. L. (2020). Parenting stress in caregivers of young children with ASD concerns prior to a formal diagnosis. Autism Research, 13(1), 82–92. https://doi.org/10.1002/aur.2213
Eggleston M. J. F., Thabrew H., Frampton C. M. A., Eggleston K. H. F., Hennig S. C. (2019). Obtaining an autism spectrum disorder diagnosis and supports: New Zealand parents’ experiences. Research in Autism Spectrum Disorders, 62, 18–25. https://doi.org/10.1016/j.rasd.2019.02.004
Fuentes J., Ferrari Arroyo M. J., Boada Muñoz L., Touriño Aguilera E., Artigas Pallarés J., Belinchón Carmona M., Muñoz Yunta J. A., Hervás Zúñiga A., Canal Bedia R., Hernández Rodríguez J. M., Díez Cuervo Á., Idiazábal Alecha M. Á., Mulas Delgado F., Palacios Antón S., Tamarit Cuadrado J., Martos Pérez J., Posada De la Paz M. (2006). Guía de buena práctica para el tratamiento de los trastornos del espectro autista [Good practice guidelines for the treatment of autistic spectrum disorders]. Revista de Neurología, 43(07), 425–438. https://doi.org/10.33588/rn.4307.2005750
Fuentes J., Hervás A., Howlin P. (2021). ESCAP practice guidance for autism: A summary of evidence-based recommendations for diagnosis and treatment. European Child and Adolescent Psychiatry, 30, 961–984. https://doi.org/10.1007/s00787-020-01587-4
García-Primo P., Hellendoorn A., Charman T., Roeyers H., Dereu M., Rogé B., Baduel S., Muratori F., Narzisi A., Van Daalen E., Moilanen I., de la Paz M. P., Canal-Bedia R. (2014). Screening for autism spectrum disorders: State of the art in Europe. European Child & Adolescent Psychiatry, 23, 1005–1021. https://doi.org/10.1007/s00787-014-0555-6
Gentles S. J., Nicholas D. B., Jack S. M., McKibbon K. A., Szatmari P. (2019). Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care. Autism, 24, 470–483. https://doi.org/10.1177/1362361319874647
Ghaderi G., Watson S. L. (2019). “In medical school, you get far more training on medical stuff than developmental stuff”: Perspectives on ASD from Ontario physicians. Journal of Autism and Developmental Disorders, 49(2), 683–691. https://doi.org/10.1007/s10803-018-3742-3
Gibbs V., Aldridge F., Sburlati E., Chandler F., Smith K., Cheng L. (2019). Missed opportunities: An investigation of pathways to autism diagnosis in Australia. Research in Autism Spectrum Disorders, 57, 55–62. https://doi.org/10.1016/j.rasd.2018.10.007
Goin-Kochel R. P., Mackintosh V. H., Myers B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis?. Autism: The International Journal of Research and Practice, 10(5), 439–451. https://doi.org/10.1177/1362361306066601
Haute Autorité de Santé. (2018, February). Autism spectrum dis—order: Warning signs, detection, diagnosis and assessment in children and adolescents—Clinical practice guidelines method. https://www.has-sante.fr/upload/docs/application/pdf/2018-04/cpg_asd_diagnostic_assessment_child_teen-ager_2018.pdf
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
Höfer J., Hoffmann F., Kamp-Becker I., Poustka L., Roessner V., Stroth S., Wolff N., Bachmann C. J. (2019). Pathways to a diagnosis of autism spectrum disorder in Germany: A survey of parents. Child and Adolescent Psychiatry and Mental Health, 13(1), Article 16. https://doi.org/10.1186/s13034-019-0276-1
Howlin P., Moore A. (1997). Diagnosis in autism. Autism, 1(2), 135–162. https://doi.org/10.1177/1362361397012003
Jones E. J. H., Gliga T., Bedford R., Charman T., Johnson M. H. (2014). Developmental pathways to autism: A review of prospective studies of infants at risk. Neuroscience and Biobehavioral Reviews, C, 39, 1–33. https://doi.org/10.1016/j.neubiorev.2013.12.001
Kasari C., Freeman S., Paparella T. (2006). Joint attention and symbolic play in young children with autism: A randomized controlled intervention study. Journal of Child Psychology and Psychiatry, 47(6), 611–620. https://doi.org/10.1111/j.1469-7610.2005.01567.x
Leeuw A., Happé F., Hoekstra R. A. (2020). A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Research, 13(7), 1029–1050. https://doi.org/10.1002/aur.2276
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, 23(8), 1897–1910. https://doi.org/10.1177/1362361319841488
Locke J., Ibanez L. V., Posner E., Frederick L., Carpentier P., Stone W. L. (2020). Parent perceptions about communicating with providers regarding early autism concerns. Pediatrics, 145, S72–S80. https://doi.org/10.1542/peds.2019-1895J
Makino A., Hartman L., King G., Wong P. Y., Penner M. (2021). Parent experiences of autism spectrum disorder diagnosis: A scoping review. Review Journal of Autism and Developmental Disorders, 8, 267–284. https://doi.org/10.1007/s40489-021-00237-y
McCormack G., Dillon A. C., Healy O., Walsh C., Lydon S. (2020). Primary care physicians’ knowledge of autism and evidence-based interventions for autism: A systematic review. Review Journal of Autism and Developmental Disorders, 7(3), 226–241. https://doi.org/10.1007/s40489-019-00189-4
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, 6(1), 293–303. https://doi.org/10.1016/j.rasd.2011.05.011
National Institute for Health and Care Excellence. (2011, September). Autism spectrum disorder in under 19s: Recognition, referral and diagnosis. https://www.nice.org.uk/guidance/cg128
Osborne L. A., Reed P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12(3), 309–324. https://doi.org/10.1177/1362361307089517
Oswald D. P., Haworth S. M., Mackenzie B. K., Willis J. H. (2017). Parental report of the diagnostic process and outcome: ASD compared with other developmental disabilities. Focus on Autism and Other Developmental Disabilities, 32(2), 152–160. https://doi.org/10.1177/1088357615587500
Ozonoff S., Young G. S., Landa R. J., Brian J., Bryson S., Charman T., Chawarska K., Macari S. L., Messinger D., Stone W. L., Zwaigenbaum L., Iosif A.-M. (2015). Diagnostic stability in young children at risk for autism spectrum disorder: A baby siblings research consortium study. Journal of Child Psychology and Psychiatry, 56(9), 988–998. https://doi.org/10.1111/jcpp.12421
Pickles A., Le Couteur A., Leadbitter K., Salomone E., Cole-Fletcher R., Tobin H., Gammer I., Lowry J., Vamvakas G., Byford S., Aldred C., Slonims V., McConachie H., Howlin P., Parr J. R., Charman T., Green J. (2016). Parent-mediated social communication therapy for young children with autism (PACT): Long-term follow-up of a randomised controlled trial. The Lancet, 388(10059), 2501–2509. https://doi.org/10.1016/S0140-6736(16)31229-6
Pierce K., Gazestani V. H., Bacon E., Barnes C. C., Cha D., Nalabolu S., Lopez L., Moore A., Pence-Stophaeros S., Courchesne E. (2019). Evaluation of the diagnostic stability of the early autism spectrum disorder phenotype in the general population starting at 12 months. JAMA Pediatrics, 173(6), 578–587. https://doi.org/10.1001/jamapediatrics.2019.0624
R Core Team (2019). R: A language and environment for statistical computing. R Foundation for Statistical Computing.
Rogers S. J., Estes A., Lord C., Munson J., Rocha M., Winter J., Greenson J., Colombi C., Dawson G., Vismara L. A., Sugar C. A., Hellemann G., Whelan F., Talbott M. (2019). A multisite randomized controlled two-phase trial of the early start Denver model compared to treatment as usual. Journal of the American Academy of Child & Adolescent Psychiatry, 58(9), 853–865. https://doi.org/10.1016/j.jaac.2019.01.004
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
Smith K. A., Gehricke J.-G., Iadarola S., Wolfe A., Kuhlthau K. A. (2020). Disparities in service use among children with autism: A systematic review. Pediatrics, 145(Supplement_1), S35–S46. https://doi.org/10.1542/peds.2019-1895G
Smith-Young J., Chafe R., Audas R. (2020). “Managing the wait”: Parents’ experiences in accessing diagnostic and treatment services for children and adolescents diagnosed with autism spectrum disorder. Health Services Insights, 13. https://doi.org/10.1177/1178632920902141
Steinman K. J., Stone W. L., Ibañez L. V., Attar S. M. (2021). Reducing barriers to autism screening in community primary care: A pragmatic trial using web-based screening. Academic Pediatrics, 1–8. https://doi.org/10.1016/j.acap.2021.04.017
Thompson A., Suñol R. (1995). Expectations as determinants of patient satisfaction: Concepts, theory and evidence. International Journal for Quality in Health Care, 7(2), 127–141. https://doi.org/10.1093/intqhc/7.2.127
van Tongerloo M. A. M. M., van Wijngaarden P. J. M., van der Gaag R. J., Lagro-Janssen A. L. M. (2015). Raising a child with an Autism Spectrum Disorder: “If this were a partner relationship, I would have quit ages ago.” Family Practice, 32(1), 88–93. https://doi.org/10.1093/fampra/cmu076
Wong V., Yu Y., Keyes M. L., McGrew J. H. (2017). Pre-diagnostic and diagnostic stages of autism spectrum disorder: A parent perspective. Child Care in Practice, 23(2), 195–217. https://doi.org/10.1080/13575279.2016.1199537
Zavaleta-Ramírez P., Rosetti M. F., Albores-Gallo L., Vargas-Soberanis M. A., López O. N., Medina-Mora M. E. (2020). Pathways to a diagnosis of autism spectrum disorder. Psychiatric Services, 71, 1120–1126. https://doi.org/10.1176/appi.ps.201900518
Zuckerman K. E., Lindly O. J., Sinche B. K. (2015). Parental concerns, provider response, and timeliness of autism spectrum disorder diagnosis. Journal of Pediatrics, 166(6), 1431–1439.e1. https://doi.org/10.1016/j.jpeds.2015.03.007
Zwaigenbaum L., Bauman M. L., Choueiri R., Kasari C., Carter A., Granpeesheh D., Mailloux Z., Smith Roley S., Wagner S., Fein D., Pierce K., Buie T., Davis P. A., Newschaffer C., Robins D., Wetherby A., Stone W. L., Yirmiya N., Estes A., . . . Natowicz M. R. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136(Supplement 1), S60–S81. https://doi.org/10.1542/peds.2014-3667E
Zwaigenbaum L., Bryson S., Garon N. (2013). Early identification of autism spectrum disorders. Behavioural Brain Research, 251, 133–146. https://doi.org/10.1016/j.bbr.2013.04.004
Zwaigenbaum L., Bryson S. E., Brian J., Smith I. M., Roberts W., Szatmari P., Roncadin C., Garon N., Vaillancourt T. (2016). Stability of diagnostic assessment for autism spectrum disorder between 18 and 36 months in a high-risk cohort. Autism Research, 9(7), 790–800. https://doi.org/10.1002/aur.1585
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Article first published online: March 9, 2022
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