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Journal of Autism and Developmental Disorders

Gepubliceerd in:

31-05-2021 | Original Paper

Searching for What Really Matters: A Thematic Analysis of Quality of Life among Preschool Children on the Autism Spectrum

Auteurs: Jérôme Lichtlé, Kristopher Lamore, Amandine Pedoux, Naomi Downes, Laurent Mottron, Emilie Cappe

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2022

Abstract

Quality of life (QoL) is an essential measure when assessing health interventions. Most early interventions for preschool children on the spectrum evaluate the effects on autism symptoms. However, researchers increasingly believe that good interventions should also improve the QoL of these children. Domains of QoL among preschool children on the autism spectrum have not previously been researched. We interviewed adults on the spectrum to explore early childhood experiences that made their lives satisfying. Our data revealed four major themes: interests, environmental regularity, sensory differences and social interactions. This study provides the first insights on aspects of life important to pre-schoolers on the spectrum. Findings will contribute to developing items for a measure of QoL among this population.

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Adams, D., Clark, M., & Simpson, K. (2019). The relationship between child anxiety and the quality of life of children, and parents of children, on the autism spectrum. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-019-03932-2CrossRefPubMedPubMedCentral

American Psychological Association. (2001). Publication manual of the American Psychological Association (5th ed.). . APA.

Anthony, L. G., Kenworthy, L., Yerys, B. E., Jankowski, K. F., James, J. D., Harms, M. B., & Wallace, G.L. . (2013). Interests in high-functioning autism are more intense, interfering, and idiosyncratic, but not more circumscribed, than those in neurotypical development. Development and Psychopathology, 25(3), 643–652. https://doi.org/10.1017/S0954579413000072CrossRefPubMedPubMedCentral

Ashburner, J., Bennett, L., Rodger, S., & Ziviani, J. (2013). Understanding the sensory experiences of young people with autism spectrum disorder: A preliminary investigation. Australian Occupational Therapy Journal, 60(3), 171–180. https://doi.org/10.1111/1440-1630.12025CrossRefPubMed

Ayres, M., Parr, J. R., Rodgers, J., Mason, D., Avery, L., & Flynn, D. (2017). A systematic review of quality of life of adults on the autism spectrum. Autism, 22(7), 774–783. https://doi.org/10.1177/1362361317714988CrossRefPubMed

Azad, G. F., Dillon, E., Feuerstein, J., Kalb, L., Neely, J., & Landa, R. (2020). Quality of life in school-aged youth referred to an autism specialty clinic: a latent profile analysis. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-019-04353-xCrossRefPubMed

Barusch, A. S. (2011). New understanding of memory poses challenges for retrospective research. Journal of Gerontological Social Work, 54, 751–754. https://doi.org/10.1080/01634372.2011.633481CrossRefPubMed

Beckett, M., Da Vanzo, J., Sastry, N., Panis, C., & Peterson, C. (2001). The quality of retrospective data: an examination of long-term recall in a developing country. The Journal of Human Resources, 36(3), 593–625. https://doi.org/10.2307/3069631CrossRef

Bertelli, L., Piva Merli, M., Rossi, M., Lassi, S., Bianco, A., & Colangelo, J. (2013). Quality of life in pharmacological intervention on autism spectrum disorders. Advances in Mental Health and Intellectual Disabilities, 7(1), 40–48. https://doi.org/10.1108/20441281311294684CrossRef

Bieleninik, L., Posserud, M. B., Geretsegger, M., Thompson, G., Elefant, C., & Gold, C. (2017). Tracing the temporal stability of autism spectrum diagnosis and severity as measured by the Autism Diagnostic Observation Schedule: A systematic review and meta-analysis. PLoS ONE. https://doi.org/10.1371/journal.pone.0183160CrossRefPubMedPubMedCentral

Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood a population-based study. Autism, 15(1), 7–20. https://doi.org/10.1177/1362361309346066CrossRefPubMed

Bishop-Fitzpatrick, L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2017). Participation in recreational activities buffers the impact of perceived stress on quality of life in adults with autism spectrum disorder. Autism Research, 10(5), 973–982. https://doi.org/10.1002/aur.1753CrossRefPubMedPubMedCentral

Bishop-Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick, M. R. (2016). Characterizing objective quality of life and normative outcomes in adults with autism spectrum disorder: an exploratory latent class analysis. Journal of Autism and Developmental Disorders, 46(8), 2707–2719. https://doi.org/10.1007/s10803-016-2816-3CrossRefPubMedPubMedCentral

Blanchet, A., & Gotman, A. (2010). L’entretien: L’enquête et ses méthodes [The interview: Survey and methods]. Paris, France: Amand Colin.

Bottema-Beutel, K., Crowley, S., Sandbank, M., & Woynaroski, T. G. (2020). Research Review: Conflicts of Interest (COIs) in autism early intervention research–a meta-analysis of COI influences on intervention effects. Journal of Child Psychology and Psychiatry. https://doi.org/10.1111/jcpp.13249CrossRefPubMed

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oaCrossRef

Brogger, J., Eagan, T., Eide, G. E., Bakke, P., & Gulsvik, A. (2004). Bias in retrospective studies of trends in asthma incidence. European Respiratory Journal, 23, 281–286. https://doi.org/10.1183/09031936.03.00041103CrossRef

Bruck, L., & Landa & Goodman, . (2007). Autobiographical memory and suggestibility in children with autism spectrum disorder. Development and Psychopathology, 19, 73–95.CrossRef

Chiang, H. M., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Research in Autism Spectrum Disorders, 8(8), 974–986. https://doi.org/10.1016/j.rasd.2014.05.003CrossRef

Chuang, I. C., Tseng, M. H., Lu, Lu., Shieh, J. Y., & Cermak, S. A. (2014). Predictors of the health-related quality of life in preschool children with Autism spectrum disorders. Research in Autism Spectrum Disorder, 8(9), 1062–1070. https://doi.org/10.1016/j.rasd.2014.05.015CrossRef

Clark, B. G., Magill-Evans, J. E., & Koning, C. J. (2015). Youth With Autism Spectrum Disorders: Self- and Proxy-Reported Quality of Life and Adaptive Functioning. Focus on Autism and Other Developmental Disabilities, 30(1), 57–64. https://doi.org/10.1177/1088357614522289CrossRef

Coghill, D., Danckaerts, M., Sonuga-Barke, E., Sergeant, J., & The ADHD European Guidelines Group. (2009). Practitioner review: Quality of life in child mental health—conceptual challenges and practical choices. Journal of Child Psychology and Psychiatry, 50(5), 544–561. https://doi.org/10.1111/j.1469-7610.2009.02008.xCrossRef

Colman, I., Kingsbury, M., Garad, Y., Zeng, Y., Naicker, K., Patten, S., & Thompson, A. H. (2016). Consistency in adult reporting of adverse childhood experiences. Psychological Medicine, 46(3), 543–549. https://doi.org/10.1017/S0033291715002032CrossRefPubMed

Cribb, S., Kenny, L., & Pellicano, E. (2019). ‘I definitely feel more in control of my life’: The perspectives of young autistic people and their parents on emerging adulthood. Autism, 23(7), 1765–1781. https://doi.org/10.1177/1362361319830029CrossRefPubMed

Dawson, M. & Fletcher-Watson, S. (2021). Commentary: What conflicts of interest tell us about autism intervention research—a commentary on Bottema-Beutel et al. (2020). Journal of Child Psychology and Psychiatry, 62(1), 16–18. https://doi.org/10.1111/jcpp.13315CrossRefPubMed

de Vaus, D. (2011). Retrospective Study. In V. Jupp (dir.), The SAGE Dictionary of Social Research Methods (p. 269–270). London : SAGE Publications.

Delahaye, J., Kovacs, E., Sikora, D., Hall, T. A., Orlich, F., Clemons, T. E., & …Kuhlthau, K. . (2014). The relationship between Health-Related Quality of Life and sleep problems in children with Autism Spectrum Disorder. Research in Autism Spectrum Disorder, 8(3), 292–303. https://doi.org/10.1016/j.rasd.2013.12.015CrossRef

DePape, A. M., & Lindsay, S. (2016). Lived experiences from the perspective of individuals with autism spectrum disorder: A qualitative meta-synthesis. Focus on Autism and Other Developmental Disabilities, 31(1), 60–71. https://doi.org/10.1177/1088357615587504CrossRef

Deserno, M. K., Borsboom, D., Begeer, S., Agelink van Rentergem, J. A., Mataw, K., & Geurts, H. M. (2019). Sleep determines quality of life in autistic adults: A longitudinal study. Autism Research, 12(5), 794–801. https://doi.org/10.1002/aur.2103CrossRefPubMedPubMedCentral

Deserno, M. K., Borsboom, D., Begeer, S., & Geurts, H. M. (2017). Multicausal systems ask for multicausal approaches: A network perspective on subjective well-being in individuals with autism spectrum disorder. Autism, 21(8), 960–971.CrossRef

Egilson, S. T., Ólafsdóttir, L. B., Leósdóttir, T., & Saemundsen, E. (2017). Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self-and proxy-reports. Autism, 2(2), 133–141. https://doi.org/10.1177/1362361316630881CrossRef

Eiser, C., & Jenney, M. (2007). Measuring quality of life. Archives of Disease in Childhood, 92(4), 348–350. https://doi.org/10.1136/adc.2005.086405CrossRefPubMedPubMedCentral

Epstein, A., Whitehouse, A., Williams, K., Murphy, N., Leonard, H., Davis, E., & Downs, J. . (2019). Parent-observed thematic data on quality of life in children with autism spectrum disorder. Autism, 23(1), 71–80. https://doi.org/10.1177/1362361317722764CrossRefPubMed

Fekkes, M., Theunissen, N. C. M., Brugman, E., Veen, S., Verrips, E. G. H., Koopman, H. M., & …Verloove-Vanhorick, S.P. . (2000). Development and psychometric evaluation of the TAPQOL: A health-related quality of life instrument for 1–5-year-old children. Quality of Life Research, 9(8), 961–972. https://doi.org/10.1023/a:1008981603178CrossRefPubMed

Feldhaus, C., & von Ossietzky, C. (2015). Quality of life - development of an assessment for people with autism. Psychology Research, 5(5), 327–337.

Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., & …Pellicano, E. . (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943–953. https://doi.org/10.1177/1362361318786721CrossRefPubMed

Flor, J., Bellando, J., Lopez, M., & Shui, A. (2017). Developmental Functioning and Medical Co-morbidity Profile of Children with Complex and Essential. Autism Research, 10(8), 1344–1352. https://doi.org/10.1002/aur.1779CrossRefPubMed

Franchini, M., Zöller, D., Gentaz, E., Glaser, B., Wood de Wilde, H. Kojovic, N., Schaer, M. (2018). Early adaptive functioning trajectories in preschoolers with autism spectrum disorders. Journal of Pediatric Psychology, 43(7), 800–813. https://doi.org/10.1093/jpepsy/jsy024CrossRefPubMed

French, L., & Kennedy, E. M. M. (2018). Annual Research Review: Early intervention for infants and young children with, or at-risk of, autism spectrum disorder: a systematic review. Journal of Child Psychology and Psychiatry, 59(4), 444–456. https://doi.org/10.1111/jcpp.12828CrossRefPubMed

Gasper, D. (2010). Understanding the diversity of conceptions of well-being and quality of life. Journal of Behavioral and Experimental Economics, 39(3), 351–360. https://doi.org/10.1016/j.socec.2009.11.006CrossRef

Goris, J., Brass, M., Cambier, C., Delplanque, J., Wiersema, J. R., & Braem, S. (2019). The relation between preference for predictability and autistic traits. Autism Research. https://doi.org/10.1002/aur.2244CrossRefPubMed

Green, S. A., Ben-Sasson, A., Soto, T. W., & Carter, A. S. (2012). Anxiety and sensory over-responsivity in toddlers with autism spectrum disorders: Bidirectional effects across time. Journal of Autism and Developmental Disorders, 42(6), 1112–1119. https://doi.org/10.1007/s10803-011-1361-3CrossRefPubMedPubMedCentral

Grove, R., Hoekstra, R. A., Wierda, M., & Begeer, S. (2018). Special Interests and Subjective Wellbeing in Autistic Adults. Autism Research, 11(5), 766–775. https://doi.org/10.1002/aur.1931CrossRefPubMed

Grove, R., Roth, I., & Hoekstra, R. A. (2016). The motivation for special interests in individuals with autism and controls: Development and validation of the special interest motivation scale. Autism Research, 9(6), 677–688. https://doi.org/10.1002/aur.1560CrossRefPubMed

Gulec-Aslan, Y., Ozbey, F., & Yassibas, U. (2013). “I have lived an autism experience. Autism is an interesting disease”: The life story of a young man with autism. International Education Studies, 6(1), 74–84.

Harrington, C., Foster, M., Rodger, S., & Ashburner, J. (2014). Engaging young people with autism spectrum disorder in research interviews. British Journal of Learning Disabilities, 42, 153–161. https://doi.org/10.1111/bld.12037CrossRef

Hassan, E. (2005). Recall bias can be a threat to retrospective and prospective research designs. The Internet Journal of Epidemiology. https://doi.org/10.5580/2732CrossRef

Heasman, B., & Gillespie, A. (2019). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding. Autism, 23(4), 910–921. https://doi.org/10.1177/1362361318785172CrossRefPubMed

Hong, J., Bishop-Fitzpatrick, L., Smith, L., Greenberg, J. S., & Mailick, M. R. (2016). Factors associated with subjective quality of life of adults with autism spectrum disorder: Self-report vs. maternal reports. Journal of Autism and Developmental Disorders, 46(4), 1368–1378.CrossRef

Ikeda, E., Hinckson, E., & Krägeloh, C. (2014). Assessment of quality of life in children and youth with autism spectrum disorder: a critical review. Quality of Life Research, 23(4), 1069–1085. https://doi.org/10.1007/s11136-013-0591-6CrossRefPubMed

Ikeda, E., Krägeloh, C., Water, T., & Hinckson, E. A. (2016). An exploratory study of self-reported quality of life in children with autism spectrum disorder and intellectual disability. Child Indicators Research, 9(1), 133–153.CrossRef

Jacques, C., Courchesne, V., Meilleur, A. A. S., Mineau, S., Ferguson, S., Cousineau, S., … Mottron, L. (2018). What interests young autistic children? An exploratory study of object exploration and repetitive behavior. PLoS ONE. https://doi.org/10.1371/journal.pone.0209251CrossRefPubMedPubMedCentral

Jahan, M. U., Karim, M. R., Rahman, A., & Akhter, S. (2015). Cognitive functions and health related quality of life of institutional autism spectrum disorder children in Dhaka city. Bangladesh Medical Researsh Council Bulletin, 41(3), 151–159.CrossRef

Jivraj, S., Goodman, A., Ploubidis, G. B., & Oliveira, C. D. (2020). Testing comparability between retrospective life history data and prospective birth cohort study data. Journals of Gerontology: Social Sciences, 75(1), 207–217. https://doi.org/10.1093/geronb/gbx042CrossRef

Jordan, C. J., & Caldwell-Harris, C. L. (2012). Understanding differences in neurotypical and autism spectrum special interests through internet forums. Intellectual and Developmental Disabilities, 50(5), 391–402. https://doi.org/10.1352/1934-9556-50.5.391CrossRefPubMed

Karkhaneh, M., Clark, B., Ospina, M. B., Seida, J. C., Smith, V., & Hartling, L. (2010). Social Stories^TM to improve social skills in children with autism spectrum disorder: A systematic review. Autism, 14, 641–662. https://doi.org/10.1177/1362361310373057CrossRefPubMed

Kirby, A. V., Dickie, V. A., & Baranek, G. T. (2014). Sensory experiences of children with autism spectrum disorder: In their own words. Autism, 19(3), 316–326. https://doi.org/10.1177/1362361314520756CrossRefPubMedPubMedCentral

Knüppel, A., Telléus, G. K., Jakobsen, H., & Lauritsen, M. B. (2018). Quality of life in adolescents and adults with autism spectrum disorder: Results from a nationwide Danish survey using self-reports and parental proxy-reports. Research in Developmental Disabilities, 83, 247–259. https://doi.org/10.1016/j.ridd.2018.09.004CrossRefPubMed

Kose, S., Erermis, S., Ozturk, O., & Aydin, C. (2013). Health Related Quality of Life in children with Autism Spectrum Disorders: The clinical and demographic related factors in Turkey. Research in Autism Spectrum Disorder, 7(2), 213–220. https://doi.org/10.1016/j.rasd.2012.09.009CrossRef

Kuhlthau, K. A., McDonnell, E., Coury, D. L., Payakachat, N., & Macklin, E. (2018). Associations of quality of life with health-related characteristics among children with autism. Autism, 22(7), 804–813. https://doi.org/10.1177/1362361317704420CrossRefPubMed

Kuhlthau, K., Orlich, F., Hall, T. A., Siroka, D., Kovacs, D., & J., & Clemons, T. E. . (2010). Health-Related Quality of Life in children with autism spectrum disorders: results from the autism treatment network. Journal of Autism and Developmental Disorders, 40(6), 721–729. https://doi.org/10.1007/s10803-009-0921-2CrossRefPubMed

Lawson, L. P., Richdale, A. L., Haschek, A., Flower, R. L., Vartuli, J., Arnold, S. R. C., & Trollor, J. N. (2020). Cross-sectional and longitudinal predictors of quality of life in autistic individuals from adolescence to adulthood: The role of mental health and sleep quality. Autism. https://doi.org/10.1177/1362361320908107CrossRefPubMedPubMedCentral

Lindsay, D. S., Wade, K. A., Hunter, M. A., & Read, J. D. (2004). Adults’ memories of childhood: Affect, knowing, and remembering. Memory, 12(1), 27–43.CrossRef

MacPhail, C., Khoza, N., Abler, L., & Ranganathan, M. (2016). Process guidelines for establishing Intercoder Reliability in qualitative studies. Qualitative Research, 16(2), 198–212. https://doi.org/10.1177/1468794115577012CrossRef

Marco, E. J., Hinkley, L. B. N., Hill, S. S., & Nagarajan, S. S. (2011). Sensory processing in autism: a review of neurophysiologic findings. Pediatric Research. https://doi.org/10.1203/PDR.0b013e3182130c54CrossRefPubMedPubMedCentral

Mason, D., McConachie, H., Garland, D., Petrou, A., Rodgers, J., & Parr, J. R. (2018). Predictors of quality of life for autistic adults. Autism Research, 11(8), 1138–1147. https://doi.org/10.1002/aur.1965CrossRefPubMedPubMedCentral

Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7(1), 79–92.CrossRef

Mazurek, M. O. (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism, 18(3), 223–232. https://doi.org/10.1177/1362361312474121CrossRefPubMed

McConachie, H., Livingstone, N., Morris, C., Beresford, B., Le Couteur, A., Gringras, P., & Parr, J. R. . (2018). Parents suggest which indicators of progress and outcomes should be measured in young children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(4), 1041–1051. https://doi.org/10.1007/s10803-017-3282-2CrossRefPubMed

McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018). Enhancing the validity of a quality of life measure for autistic people. Journal of Autism and Developmental Disorders, 48(5), 1596–1611. https://doi.org/10.1007/s10803-017-3402-zCrossRefPubMed

McConachie, H., Parr, J. R., Glod, M., Hanratty, J., Livingstone, N., Oono, I. P., & Williams, K. . (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technology Assessment, 19(41), 1–538. https://doi.org/10.3310/hta19410CrossRefPubMed

Meral, B. F., & Fidan, A. (2015). Measuring the impact of feeding covariates on health-related quality of life in children with autism spectrum disorder. Research in Autism Spectrum Disorders, 10, 124–130. https://doi.org/10.1016/j.rasd.2014.11.009CrossRef

Mercier, C., Mottron, L., & Belleville, S. (2000). A psychosocial study on restricted interests in high-functioning persons with pervasive developmental disorders. Autism, 4(4), 406–425.CrossRef

Moss, P., Mandy, W., & Howlin, P. (2017). Child and adult factors related to quality of life in adults with autism. Journal of Autism and Developmental Disorders, 47(6), 1830–1837. https://doi.org/10.1007/s10803-017-3105-5CrossRefPubMedPubMedCentral

Mottron, L. (2019). Detrimental “Sensitivity” framework misses the positive performance role and autonomy of autistic perception. Cognitive Neuroscience, 10(3), 168–169. https://doi.org/10.1080/17588928.2019.1596073CrossRefPubMed

Mottron, L., & Bzdok, D. (2020). Autism spectrum heterogeneity: fact or artifact? Molecular Psychiatry, 25, 3178––3185. https://doi.org/10.1038/s41380-020-0748-yCrossRefPubMedPubMedCentral

Nathan, P. C., Furlong, W., & Barr, R. D. (2004). Challenges to the measurement of health-related quality of life in children receiving cancer therapy. Pediatric Blood and Cancer, 43(3), 215–223.CrossRef

National Institute for Health and Care Excellence (NICE) (2013). Autism: the management and support of children and young people on the autism spectrum. London, Great Britain: National Institute for Health and Care Excellence.

O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014). Standards for Reporting Qualitative Research: A Synthesis of Recommendations. Academic Medicine, 89(9), 1245–1251. https://doi.org/10.1097/ACM.0000000000000388CrossRefPubMed

Oztürk, O., Erermis, S., Ercan, E. S., Gülen, F., Kabukçu Basai, B., & Basai, …Aydin, C. . (2016). Does the quality of life in autism spectrum disorder differ from other chronic disorders and healthy children? Anadolu Psikiyatri Derg, 17(5), 419–426. https://doi.org/10.5455/apd.185269CrossRef

Pahnke, J., Lundgren, T., Hursti, T., & Hirvikoski, T. (2014). Outcomes of an acceptance and commitment therapy-based skills training group for students with high-functioning autism spectrum disorder: A quasi-experimental pilot study. Autism, 18(8), 953–964. https://doi.org/10.1177/1362361313501091CrossRefPubMed

Park, S. H., Song, Y. J. C., Demetriou, E. A., Pepper, K. L., Norton, A., Thomas, E. E., & Guastella, A.J. . (2019). Disability, functioning, and quality of life among treatment-seeking young autistic adults and its relation to depression, anxiety, and stress. Autism, 23(7), 1675–1686. https://doi.org/10.1177/1362361318823925CrossRefPubMed

Pfeiffer, B., Piller, A., Giazzoni-Fialko, T., & Chainani, A. (2016). Meaningful outcomes for enhancing quality of life for individuals with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 42(1), 90–100. https://doi.org/10.3109/13668250.2016.1197893CrossRef

Plimley, L. A. (2007). A review of quality of life issues and people with autism spectrum disorders. British Journal of Learning Disabilities, 35, 205–213. https://doi.org/10.1111/j.1468-3156.2007.00448.xCrossRef

Porter, N. (2012). Promotion of pretend play for children with high-functioning autism through the use of circum- scribed interests. Early Childhood Education Journal, 40, 161–167.CrossRef

Preece, D., & Jordan, R. (2010). Obtaining the views of children and young people with autism spectrum disorders about their experience of daily life and social care support. British Journal of Learning Disabilities, 38, 10–20. https://doi.org/10.1111/j.1468-3156.2009.00548.xCrossRef

Reichow, B., Hume, K., Barton, E. E., & Boyd, B. A. (2018). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD009260.pub3CrossRef

Ritchie, J., & Lewis, J. (2003). Qualitative Research Practice: A Guide for Social Science Students and Researchers. SAGE Publications.

Robertson, A. E., & Simmons, D. R. (2015). The sensory experiences of adults with autism spectrum disorder: A qualitative analysis. Perception, 44(5), 569–586.CrossRef

Robeyns, I. (2016). Conceptualising well-being for autistic persons. Journal of Medical Ethics, 42, 383–390. https://doi.org/10.1136/medethics-2016-103508CrossRefPubMed

Rodary, C. (2000). Méthodologie d’étude de la qualité de vie chez l’enfant en recherche clinique [Methodology for studying the quality of life among children in clinical research]. Archives De Pédiatrie, 7(2), 230–232. https://doi.org/10.1016/S0929-693X(00)80049-4CrossRef

Romelaer, P. (2005). L’entretien de recherche [Research interview]. In P. Roussel et F. Wacheux (dir.), Management des ressources humaines [Managing human resources] (p. 101–137). Paris, France : De Boeck Supérieur.

Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., & …Woynaroski, T. G. . (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. https://doi.org/10.1037/bul0000215CrossRefPubMed

Sapey-Triomphe, L. A., Moulin, M., Sonie, S., & Schmitz, C. (2017). The glasgow sensory questionnaire: validation of a french language version and refinement of sensory profiles of people with high autism-spectrum quotient. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-017-3422-8CrossRef

Sasson, N., Faso, D., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, D. P. (2017). Neurotypical peers are less willing to interact with those with autism based on thin slice judgments. Scientific Reports. https://doi.org/10.1038/srep40700CrossRefPubMedPubMedCentral

Schalock, R. L. (2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48, 203–216. https://doi.org/10.1111/j.1365-2788.2003.00558.xCrossRefPubMed

Schalock, R. L., & Parmenter, T. (2000). Preface in quality of life: Its conceptualisation, measurement and application. In M. Rapley (Ed.), Quality of Life research : A critical introduction (pp. 11–16). Sage.

Schepers, S. A., van Oers, H. A., Maurice-Stam, H., Huisman, J., Verhaak, C. M., Grootenhuis, M. A., & Haverman, L. (2017). Health related quality of life in Dutch infants, toddlers, and young children. Health and Quality of Life Outcomes. https://doi.org/10.1186/s12955-017-0654-4CrossRefPubMedPubMedCentral

Sikora, D. M., Vora, P., Coury, D. L., & Rosenberg, D. (2012). Attention-deficit/hyperactivity disorder symptoms, adaptive functioning, and quality of life in children with autism spectrum disorder. Pediatrics, 130(2), 91–97. https://doi.org/10.1542/peds.2012-0900GCrossRef

Singh, N. N., Lancioni, G. E., Winton, A. S. W., Fisher, B. C., Wahler, R. G., & McAleavey, …Sabaawi, M. . (2006). Mindful Parenting Decreases Aggression, Noncompliance, and Self-Injury in Children With Autism. Journal of Emotional and Behavioral Disorders, 14(3), 169–177. https://doi.org/10.1177/10634266060140030401CrossRef

Smith, R. S., & Sharp, J. (2013). Fascination and isolation: A grounded theory exploration of unusual sensory experiences in adults with Asperger syndrome. Journal of Autism and Developmental Disorders, 43(4), 891–910. https://doi.org/10.1007/s10803-012-1633-6CrossRefPubMed

Stafford, L. (2017). “What about my voice”: Emancipating the voices of children with disabilities through participant-centred methods. Children’s Geographies, 15, 600–613. https://doi.org/10.1080/14733285.2017.1295134CrossRef

Stokes, M. A., Kornienko, L., Scheeren, A. M., Koot, H. M., & Begeer, S. (2016). A comparison of children and adolescent’s self-report and parental report of the PedsQL among those with and without autism spectrum disorder. Quality of Life Research, 26(3), 611–624. https://doi.org/10.1007/s11136-016-1490-4CrossRefPubMed

Tavernor, L., Barron, E., Rogers, J., & McConachie (2013). Finding out what matters: validity of quality of life measurement in young people with ASD. Child: Care, Health and Development, 39(4), 592–601. https://doi.org/10.1111/j.1365-2214.2012.01377.xCrossRef

Taylor, J. L. (2017). When is a good outcome actually good? Autism, 21(8), 918–919. https://doi.org/10.1177/1362361317728821CrossRef

Taylor, M. J., Gustafsson, P., Larsson, H., Gillberg, C., Lundstrom, S., & Lichstenstein, P. (2018). Examining the association between autistic traits and atypical sensory reactivity: A twin study. Journal of the American Academy of Child and Adolescent Psychiatry, 57(2), 96–102. https://doi.org/10.1016/j.jaac.2017.11.019CrossRefPubMed

Teachman, G., & Gibson, B. E. (2013). Children and youth with disabilities: Innovative methods for single qualitative interviews. Qualitative Health Research, 23, 264–274. https://doi.org/10.1177/1049732312468063CrossRefPubMed

Tesfaye, R., Courchesne, V., Yusuf, A., Savion-Lemieux, T., Singh, L., Shikako-Thomas, K., & Elsabbagh, M. (2019). Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities. Autism, 23(8), 1882–1896. https://doi.org/10.1177/1362361319831487CrossRefPubMedPubMedCentral

Turner, R. R., Quittner, A. L., Parasuraman, B. M., Kallich, J. D., & Cleeland, C. S. (2007). Patient-reported outcomes: Instrument development and selection issues. Value in Health, 10(2), 86–93.CrossRef

Turner-Brown, L. M., Lam, K. S., Holtzclaw, T. N., Dichter, G. S., & Bodfish, J. W. (2011). Phenomenology and measurement of circumscribed interests in autism spectrum disorders. Autism, 15(4), 437–456. https://doi.org/10.1177/1362361310386507CrossRefPubMedPubMedCentral

Ullman, M. T., & Pullman, M. Y. (2015). A compensatory role for declarative memory in neurodevelopmental disorders. Neuroscience and Biobehavioral Reviews, 51, 205–222. https://doi.org/10.1016/j.neubiorev.2015.01.008CrossRefPubMedPubMedCentral

Viera, A. J., & Garrett, J. M. (2005). Understanding interobserver agreement: the kappa statistic. Family Medicine, 37(5), 360–363.PubMed

Volkmar, F. R., & Cohen, D. J. (1985). The experience of infantile autism: A first-person account by Tony W. Journal of Autism and Developmental Disorders, 15, 47–54.CrossRef

Wainer, A. L., Hepburn, S., & McMahon Griffith, E. (2017). Remembering parents in parent-mediated early intervention: An approach to examining impact on parents and families. Autism, 21(1), 5–17. https://doi.org/10.1177/1362361315622411CrossRefPubMed

WHOQOL Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41(10), 1403–1409. https://doi.org/10.1016/0277-9536(95)00112-KCrossRef

Winter-Messiers, M., Herr, C., Wood, C., Brooks, A., Gates, M., Houston, T., & Tingstad, K. (2007). How far can brian ride the daylight 4449 Express? A strength-based model of Asperger syndrome based on special interest areas. Focus on Autism and Other Developmental Disabilities, 22(2), 67–79.CrossRef

Wood, R. (2019). Autism, intense interests and support in school: From wasted efforts to shared understandings. Educational Review, 73(1), 34–54. https://doi.org/10.1080/00131911.2019.1566213CrossRef

Zukauskas, P. R., Silton, N., & Baptista, F. (2009). Temporality and Asperger’s syndrome. Journal of Phenomenological Psychology, 40(1), 85–106. https://doi.org/10.1163/156916209X427990CrossRef

Titel: Searching for What Really Matters: A Thematic Analysis of Quality of Life among Preschool Children on the Autism Spectrum
Auteurs: Jérôme Lichtlé
Kristopher Lamore
Amandine Pedoux
Naomi Downes
Laurent Mottron
Emilie Cappe
Publicatiedatum: 31-05-2021
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 5/2022
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-021-05097-3

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