Abstract
Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis—a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child’s behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274] = 5.82, p = .017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6] = 13.11, p < .001) than later diagnostic group (t[6] = − 2.10, p = .037), and child functioning did not predict family impact (t[6] = -0.31, p = .76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support.
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References
Abidin, R. R. (2012). Parenting stress index (4th ed.). PAR.
Abidin, R., & Brunner, J. F. (1995). Development of a parenting alliance inventory. Journal of Clinical Child Psychology, 24(1), 31–40. https://doi.org/10.1207/s15374424jccp2401_4
Amaral, D. G. (2017). Examining the causes of autism. In Cerebrum: The Dana forum on brain science (Vol. 2017). Dana Foundation. PMID: 28698772.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5). American Psychiatric Pub.
Barroso, N. E., Hungerford, G. M., Garcia, D., Graziano, P. A., & Bagner, D. M. (2016). Psychometric properties of the Parenting Stress Index-Short Form (PSI-SF) in a high-risk sample of mothers and their infants. Psychological Assessment, 28(10), 1331. https://doi.org/10.1037/pas0000257
Bauminger, N., & Shulman, C. (2003). The development and maintenance of friendship in high-functioning children with autism: Maternal perceptions. Autism, 7, 81–97. https://doi.org/10.1177/1362361303007001007
Blacher, J., & Baker, B. L. (2019). Collateral effects of youth disruptive behavior disorders on mothers’ psychological distress: Adolescents with autism spectrum disorder, intellectual disability, or typical development. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-017-3347-2
Braiden, H. J., Bothwell, J., & Duffy, J. (2010). Parents’ experience of the diagnostic process for autistic spectrum disorders. Child Care in Practice, 16(4), 377–389. https://doi.org/10.1080/13575279.2010.498415
Broder-Fingert, S., Stadnick, N. A., Hickey, E., Goupil, J., Diaz Lindhart, Y., & Feinberg, E. (2020). Defining the core components of family navigation for autism spectrum disorder. Autism, 24(2), 526–530. https://doi.org/10.1177/1362361319864079
Campbell, K., Carpenter, K. L., Espinosa, S., Hashemi, J., Qiu, Q., Tepper, M., & Dawson, G. (2017). Use of a digital Modified Checklist for Autism in Toddlers-Revised with follow-up to improve quality of screening for autism. The Journal of Pediatrics, 183, 133–139. https://doi.org/10.1016/j.jpeds.2017.01.021
Carter, A. S., & Briggs-Gowan, M. J. (2006). Manual of the infant-toddler social-emotional assessment. Harcourt Assessment.
Cascio, M. A., Weiss, J. A., & Racine, E. (2020). Making autism research inclusive by attending to intersectionality: A review of the research ethics literature. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-020-00204-z
Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15, 83–97. https://doi.org/10.1177/1362361309354756
Chiri, G., & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16, 1081–1091. https://doi.org/10.1007/s10995-011-0833-6
Connolly, M., & Gersch, I. (2016). Experiences of parents whose children with autism spectrum disorder (ASD) are starting primary school. Educational Psychology in Practice, 32, 245–261. https://doi.org/10.1080/02667363.2016.1169512
Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Zhang, Y., & Geschwind, D. H. (2020). Timing of the diagnosis of autism in African American children. Pediatrics. https://doi.org/10.1542/peds.2019-3629
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, 153–162. https://doi.org/10.1177/1362361315573636
Crossman, M. K., Lindly, O. J., Chan, J., Eaves, M., Kuhlthau, K. A., Parker, R. A., & Murray, D. S. (2020). Families’ experiences with family navigation services in the autism treatment network. Pediatrics, 145(Supplement 1), S60–S71. https://doi.org/10.1542/peds.2019-1895I
Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266–280. https://doi.org/10.1111/j.1365-2788.2010.01258.x
Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), e17–e23. https://doi.org/10.1542/peds.2009-0958
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. https://doi.org/10.1002/aur.2213
Donenberg, G., & Baker, B. L. (1993). The impact of young children with externalizing behaviors on their families. Journal of Abnormal Child Psychology, 21, 179–198. https://doi.org/10.1007/BF00911315
Farmer, C., Swineford, L., Swedo, S. E., & Thurm, A. (2018). Classifying and characterizing the development of adaptive behavior in a naturalistic longitudinal study of young children with autism. Journal of Neurodevelopmental Disorders, 10(1), 1–9. https://doi.org/10.1186/s11689-017-9222-9
Feinberg, E., Augustyn, M., Broder-Fingert, S., Bennett, A., Weitzman, C., Kuhn, J., & Blum, N. J. (2021). Effect of family navigation on diagnostic ascertainment among children at risk for autism: A randomized clinical trial from DBPNet. JAMA Pediatrics, 175(3), 243–250. https://doi.org/10.1001/jamapediatrics.2020.5218
Guthrie, W., Wallis, K., Bennett, A., Brooks, E., Dudley, J., Gerdes, M., & Miller, J. S. (2019). Accuracy of autism screening in a large pediatric network. Pediatrics, 144(4), e20183963. https://doi.org/10.1542/peds.2018-3963
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629–642. https://doi.org/10.1007/s10803-012-1604-y
Hosmer, D. W., Jr., Lemeshow, S., & Sturdivant, R. X. (2013). Applied logistic regression (Vol. 398). Wiley.
IBM Corp. Released 2019. IBM SPSS Statistics for Macintosh, Version 26.0. IBM Corp.
Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183–1215. https://doi.org/10.1542/peds.2007-2361
Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122, e1149–e1158. https://doi.org/10.1542/peds.2008-1057
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behavior problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172–183. https://doi.org/10.1111/j.1365-2788.2005.00732.x
Maskey, M., Warnell, F., Parr, J. R., Le Couteur, A., & McConachie, H. (2013). Emotional and behavioural problems in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 851–859. https://doi.org/10.1007/s10803-012-1622-9
McIntyre, L. L. (2008). Adapting Webster-Stratton’s incredible years parent training for children with developmental delay: Findings from a treatment group only study. Journal of Intellectual Disability Research, 52, 1176–1192. https://doi.org/10.1111/j.1365-2788.2008.01108.x
McStay, R. L., Dissanayake, C., Scheeren, A., Koot, H. M., & Begeer, S. (2014). Parenting stress and autism: The role of age, autism severity, quality of life and problem ulticen of children and adolescents with autism. Autism, 18, 502–510. https://doi.org/10.1177/1362361313485163
Milne, S. L., McDonald, J. L., & Comino, E. J. (2013). Adaptive function in preschoolers in relation to developmental delay and diagnosis of autism spectrum disorders: Insights from a clinical sample. Autism, 17, 743–753. https://doi.org/10.1177/1362361312453091
Nagelkerke, N. J. (1991). A note on a general definition of the coefficient of determination. Biometrika, 78, 691–692. https://doi.org/10.2307/2337038
Neece, C. L., Kraemer, B. R., & Blacher, J. (2009). Transition satisfaction and family well being among parents of young adults with severe intellectual disability. Intellectual and Developmental Disabilities, 47(1), 31–43. https://doi.org/10.1352/2009.47:31-43
Oakland, T., & Harrison, P. L. (Eds.). (2011). Adaptive behavior assessment system-II: Clinical use and interpretation. Academic Press.
Papadopoulos, C., Lodder, A., Constantinou, G., & Randhawa, G. (2019). Systematic review of the relationship between autism stigma and informal caregiver mental health. Journal of Autism and Developmental Disorders, 49, 1665–1685. https://doi.org/10.1007/s10803-018-3835-z
Penner, M., Anagnostou, E., & Ungar, W. J. (2018). Practice patterns and determinants of wait time for autism spectrum disorder diagnosis in Canada. Molecular Autism, 9, 16. https://doi.org/10.1186/s13229-018-0201-0
Pierce, K., Marinero, S., Hazin, R., McKenna, B., Barnes, C. C., & Malige, A. (2016). Eye tracking reveals abnormal visual preference for geometric images as an early biomarker of an autism spectrum disorder subtype associated with increased symptom severity. Biological Psychiatry, 79, 657–666. https://doi.org/10.1016/j.biopsych.2015.03.032
Quintero, N., & McIntyre, L. L. (2011). Kindergarten transition preparation: A comparison of teacher and parent practices for children with autism and other developmental disabilities. Early Childhood Education Journal, 38, 411–420. https://doi.org/10.1007/s10643-010-0427-8
Reznick, J. S., Baranek, G. T., Reavis, S., Watson, L. R., & Crais, E. R. (2007). A parent-report instrument for identifying one-year-olds at risk for an eventual diagnosis of autism: The first year inventory. Journal of Autism and Developmental Disorders, 37, 1691–1710. https://doi.org/10.1007/s10803-006-0303-y
Rezendes, D. L., & Scarpa, A. (2011). Associations between parental anxiety/depression and child behavior problems related to autism spectrum disorders: The roles of parenting stress and parenting self-efficacy. Autism Research and Treatment. https://doi.org/10.1155/2011/395190
Robins, D. L., Casagrande, K., Barton, M., Chen, C. M. A., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133, 37–45. https://doi.org/10.1542/peds.2013-1813d
Rust, J. O., & Wallace, M. A. (2004). Book review: Adaptive behavior assessment system. Journal of Psychoeducational Assessment, 22, 367–373. https://doi.org/10.1177/073428290402200407
Sedgewick, F., Hill, V., & Pellicano, E. (2018). Parent perspectives on autistic girls’ friendships and futures. Autism & Developmental Language Impairments, 3, 2396941518794497. https://doi.org/10.1177/2396941518794497
Sharpe, D. L., & Baker, D. L. (2007). Financial issues associated with having a child with autism. Journal of Family and Economic Issues, 28, 247–264. https://doi.org/10.1007/s10834-007-9059-6
Shivers, C. M. (2019). Empathy and perceptions of their brother or sister among adolescent siblings of individuals with and without autism spectrum disorder. Research in Developmental Disabilities, 92, 103451. https://doi.org/10.1016/j.ridd.2019.103451
Shivers, C. M., McGregor, C., & Hough, A. (2017). Self-reported stress among adolescent siblings of individuals with autism spectrum disorder and Down syndrome. Autism. https://doi.org/10.1177/1362361317722432
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, 9–22. https://doi.org/10.1016/j.ridd.2005.09.003
Sohl, K., Mazurek, M. O., & Brown, R. (2017). ECHO autism: Using technology and mentorship to bridge gaps, increase access to care, and bring best practice autism care to primary care. Clinical Pediatrics, 56, 509–511. https://doi.org/10.1177/0009922817691825
Tait, K., Fung, F., Hu, A., Sweller, N., & Wang, W. (2016). Understanding Hong Kong Chinese families’ experiences of an autism/ASD diagnosis. Journal of Autism and Developmental Disorders, 46, 1164–1183. https://doi.org/10.1007/s10803-015-2650-z
Valicenti-McDermott, M., Lawson, K., Hottinger, K., Seijo, R., Schechtman, M., Shulman, L., & Shinnar, S. (2015). Parental stress in families of children with autism and other developmental disabilities. Journal of Child Neurology, 30, 1728–1735. https://doi.org/10.1177/0883073815579705
Wallace, G. L., Dudley, K., Anthony, L., Pugliese, C. E., Orionzi, B., Clasen, L., & Kenworthy, L. (2017). Divergence of age-related differences in social-communication: Improvements for typically developing youth but declines for youth with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(2), 472–479. https://doi.org/10.1007/s10803-016-2972-5
Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. H., Glasser, A., & Veenstra-VanderWeele, J. (2011). A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127(5), e1303–e1311. https://doi.org/10.1542/peds.2011-0426
West, E. A., Travers, J. C., Kemper, T. D., Liberty, L. M., Cote, D. L., McCollow, M. M., & Stansberry Brusnahan, L. L. (2016). Racial and ethnic diversity of participants in research supporting evidence-based practices for learners with autism spectrum disorder. The Journal of Special Education, 50(3), 151–163. https://doi.org/10.1177/0022466916632495
Wetherby, A. M., Guthrie, W., Woods, J., Schatschneider, C., Holland, R. D., Morgan, L., & Lord, C. (2014). Parent-implemented social intervention for toddlers with autism: An RCT. Pediatrics, 134(6), 1084–1093. https://doi.org/10.1542/peds.2014-0757
Willkinson, L. (1999). Statistical methods in psychology journals. American Psychologist, 54(8), 594–604. https://doi.org/10.1037/0003-066X.54.8.594
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, 195–217. https://doi.org/10.1080/13575279.2016.1199537
Zaidman-Zait, A., Mirenda, P., Zumbo, B. D., Wellington, S., Dua, V., & Kalynchuk, K. (2010). An item response theory analysis of the Parenting Stress Index-Short Form with parents of children with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 51, 1269–1277. https://doi.org/10.1111/j.1469-7610.2010.02266.x
Zwaigenbaum, L., Bauman, M. L., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., & Pierce, K. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136, S60–S81. https://doi.org/10.1542/peds.2014-3667B
Zwaigenbaum, L., Duku, E., Fombonne, E., Szatmari, P., Smith, I. M., Bryson, S. E., & Roberts, W. (2019). Developmental functioning and symptom severity influence age of diagnosis in Canadian preschool children with autism. Paediatrics & Child Health. https://doi.org/10.1093/pch/pxy076
Acknowledgments
This research was supported by grants from the National Institute of Mental Health (R01MH104355, NCT02359084; K23MH109673) and Health Resources and Services Administration (UA3MC20218). Fellowship funding came from a HRSA Institutional Training Grant (T32HS10038) and an AHRQ Training in Health Services Research for Vulnerable Populations Grant (2T32HS022242). Authors would like to thank Andrea Chu, MPH, and Julia Levinson, MSc, for their assistance with preparing the data during the development of the article.
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Hickey, E.J., Feinberg, E., Kuhn, J. et al. Family Impact During the Time Between Autism Screening and Definitive Diagnosis. J Autism Dev Disord 52, 4908–4920 (2022). https://doi.org/10.1007/s10803-021-05354-5
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DOI: https://doi.org/10.1007/s10803-021-05354-5