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/s10803-019-03932-2
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/S0954579413000072
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/10.1111/1440-1630.12025
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/10.1177/1362361317714988
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-x
Barusch, A. S. (2011). New understanding of memory poses challenges for retrospective research. Journal of Gerontological Social Work, 54, 751–754. https://doi.org/10.1080/01634372.2011.633481
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/10.2307/3069631
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/10.1108/20441281311294684
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.0183160
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/10.1177/1362361309346066
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.1753
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/s10803-016-2816-3
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.13249
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
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/10.1183/09031936.03.00041103
Bruck, L., & Landa & Goodman, . (2007). Autobiographical memory and suggestibility in children with autism spectrum disorder. Development and Psychopathology, 19, 73–95.
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.2014.05.003
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.2014.05.015
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/10.1177/1088357614522289
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.x
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/S0033291715002032
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/10.1177/1362361319830029
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.13315
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.2013.12.015
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/10.1177/1088357615587504
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.2103
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.
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/10.1177/1362361316630881
Eiser, C., & Jenney, M. (2007). Measuring quality of life. Archives of Disease in Childhood, 92(4), 348–350. https://doi.org/10.1136/adc.2005.086405
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/10.1177/1362361317722764
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:1008981603178
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/10.1177/1362361318786721
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.1779
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/jsy024
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.12828
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.2009.11.006
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.2244
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/s10803-011-1361-3
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.1931
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.1560
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.12037
Hassan, E. (2005). Recall bias can be a threat to retrospective and prospective research designs. The Internet Journal of Epidemiology. https://doi.org/10.5580/2732
Heasman, B., & Gillespie, A. (2019). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding. Autism, 23(4), 910–921. https://doi.org/10.1177/1362361318785172
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.
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/s11136-013-0591-6
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.
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.0209251
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.
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/gbx042
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/10.1352/1934-9556-50.5.391
Karkhaneh, M., Clark, B., Ospina, M. B., Seida, J. C., Smith, V., & Hartling, L. (2010). Social StoriesTM to improve social skills in children with autism spectrum disorder: A systematic review. Autism, 14, 641–662. https://doi.org/10.1177/1362361310373057
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/10.1177/1362361314520756
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.2018.09.004
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.2012.09.009
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/10.1177/1362361317704420
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/s10803-009-0921-2
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/10.1177/1362361320908107
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.
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/10.1177/1468794115577012
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.0b013e3182130c54
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.1965
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.
Mazurek, M. O. (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism, 18(3), 223–232. https://doi.org/10.1177/1362361312474121
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/s10803-017-3282-2
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-z
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/hta19410
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.2014.11.009
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.
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/s10803-017-3105-5
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/10.1080/17588928.2019.1596073
Mottron, L., & Bzdok, D. (2020). Autism spectrum heterogeneity: fact or artifact? Molecular Psychiatry, 25, 3178––3185. https://doi.org/10.1038/s41380-020-0748-y
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.
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.0000000000000388
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.185269
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/10.1177/1362361313501091
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/10.1177/1362361318823925
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/10.3109/13668250.2016.1197893
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.x
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.
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.x
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.pub3
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.
Robeyns, I. (2016). Conceptualising well-being for autistic persons. Journal of Medical Ethics, 42, 383–390. https://doi.org/10.1136/medethics-2016-103508
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)80049-4
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/bul0000215
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/s10803-017-3422-8
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/srep40700
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.x
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/s12955-017-0654-4
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.2012-0900G
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/10.1177/10634266060140030401
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/s10803-012-1633-6
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/10.1080/14733285.2017.1295134
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/s11136-016-1490-4
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.x
Taylor, J. L. (2017). When is a good outcome actually good? Autism, 21(8), 918–919. https://doi.org/10.1177/1362361317728821
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.2017.11.019
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/10.1177/1049732312468063
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/10.1177/1362361319831487
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.
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/10.1177/1362361310386507
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.2015.01.008
Viera, A. J., & Garrett, J. M. (2005). Understanding interobserver agreement: the kappa statistic. Family Medicine, 37(5), 360–363.
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.
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/10.1177/1362361315622411
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-K
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.
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/10.1080/00131911.2019.1566213
Zukauskas, P. R., Silton, N., & Baptista, F. (2009). Temporality and Asperger’s syndrome. Journal of Phenomenological Psychology, 40(1), 85–106. https://doi.org/10.1163/156916209X427990
Acknowledgements
The authors would like to thank all the study participants (autistic people and parents), and Zoé Chiron, psychology intern, who participated in the transcription of the interviews.
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This research had no funding, it was conducted as part of a PhD thesis.
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JL, the principal investigator of the study, recruited participants, collected data and participated in writing and proofreading the article. KL participated in the data processing, analysis and writing the article. AP participated in the data processing and analysis. ND participated in writing and proofreading the article. LM participated in proofreading the article; he is the co-supervisor of Jérôme Lichtlé’s doctoral thesis. EC participated in the data processing, analysis and writing the article; she is the supervisor of Jérôme Lichtlé’s doctoral thesis.
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Lichtlé, J., Lamore, K., Pedoux, A. et al. Searching for What Really Matters: A Thematic Analysis of Quality of Life among Preschool Children on the Autism Spectrum. J Autism Dev Disord 52, 2098–2111 (2022). https://doi.org/10.1007/s10803-021-05097-3
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DOI: https://doi.org/10.1007/s10803-021-05097-3