Families caring for children and adolescents with autism spectrum disorder (ASD) have a unique parenting experience and often report high stress. Resilience factors such as coping and social support are linked to positive family outcomes and protect against stress. The Family Adjustment Measure (FAM) was developed as a screener for both parental stress and coping, and in the current study, we validated its use for ASD-affected families.
With data from parents of children and adolescents with rigorously-confirmed ASD diagnoses (n = 362), we also used receiver-operating characteristics (ROC) analyses to identify cut-off scores, sensitivity, and specificity for the FAM’s four subscales, which differed for parents of children versus parents of adolescents.
For parents of children, FAM subscale cut-off scores were: Parental Distress = 16.5 (78% sensitivity, 64% specificity); Social Support = 30.5 (70% sensitivity, 52% specificity); Family-Based Support = 27.5 (73% sensitivity, 57% specificity); and Positive Coping = 24.5 (58% sensitivity, 54% specificity). For parents of adolescents, FAM subscale cut-points were: Parental Distress = 18.5 (83% sensitivity, 82% specificity); Social Support = 30.5 (73% sensitivity, 51% specificity); Family-Based Support = 28.5 (80% sensitivity, 62% specificity); and Positive Coping = 22.5 (70% sensitivity, 50% specificity).
Results support the validity of using the FAM subscales to predict clinically-significant stress within families of both children and adolescents with ASD, though the differing cut-off scores underscore the need for age-related considerations when working with ASD-affected families. Findings suggest potential clinical utility of using the FAM to identify unique risk and protective factors of families raising children and adolescents.
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Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile x syndrome. American Journal on Mental Retardation, 109(3), 237–254.
Abidin, R. R. (2012). Parenting stress index (4th ed.). Lutz, FL: PAR.
Baker-Ericzen, M., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30(4), 194–204.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51(9), 702–714.
Bekhet, A. K., Johnson, N. L., & Zauszniewski, J. A. (2012). Resilience in family members of persons with autism spectrum disorder: a review of the literature. Issues in Mental Health Nursing, 33(10), 650–656.
Ben-Sasson, A., Soto, T. W., Martínez-Pedraza, F., & Carter, A. S. (2013). Early sensory over-responsivity in toddlers with autism spectrum disorders as a predictor of family impairment and parenting stress. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 54(8), 846–853.
Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4(2), 217–228.
Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: a longitudinal replication. Journal of Autism and Developmental Disorders, 39(2), 350–362.
Benson, P. R., & Kersh, J. (2011). Marital quality and psychological adjustment among mothers of children with ASD: cross-sectional and longitudinal relationships. Journal of Autism and Developmental Disorders, 41(12), 1675–1685.
Black, K., & Lobo, M. (2008). A conceptual review of family resilience factors. Journal of Family Nursing, 14(1), 33–55.
Brei, N. B., Schwarz, G. N., & Klein-Tasman, B. P. (2015). Parenting stress: influences of autism spectrum symptomatology, behavior problems, and adaptive function. Journal of Developmental and Physical Disabilities, 27(5), 617–635.
Bristol M. M., & Schopler, E. (1983) Stress and coping in families of autistic adolescents. In E. Schopler, G. B Mesibov, (Eds) Autism in adolescents and adults. Current Issues in Autism. Boston, MA: Springer.
Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 17(4), 208–215.
Cappe, E., Wolff, M., Bobet, R., & Adrien, J. (2011). Quality of life: a key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes. Quality of Life Research, 20(8), 1279–1294.
Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 385–396.
Cohen, S., Gottlieb, B., & Underwood, L. (2000). Social relationships and health. In S. Cohen, L. Underwood, & B. Gottlieb (Eds), Measuring and intervening in social support (pp. 3–25). New York: Oxford University Press.
Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98, 310–357.
Cook, R. D., & Weisberg, S. (1982). Residuals and influence in regression. New York: Chapman & Hall.
Cuzzocrea, F., Murdaca, A. M., Costa, S., Filippello, P., & Larcan, R. (2016). Parental stress, coping strategies and social support in families of children with a disability. Child Care in Practice, 22(1), 3–19.
Daire, A. P., Dominguez, V. N., Carlson, R. G., & Case-Pease, J. (2014). Family adjustment measure: scale construction and validation. Measurement and Evaluation in Counseling and Development, 47(2), 91–101.
Daire, A. P., Munyon, M. D., Carlson, R. G., Kimemia, M., & Mitcham, M. (2011). Examining distress of parents of children with and without special needs. Journal of Mental Health Counseling, 33(2), 177–188.
Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278–1291.
Ennis-Cole, D., Durodoye, B. A., & Harris, H. L. (2013). The impact of culture on autism diagnosis and treatment: considerations for counselors and other professionals. The Family Journal, 21(3), 279–287.
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375–387.
Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., & Munson, J. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain & Development, 35(2), 133–138.
Fischbach, G. D., & Lord, C. (2010). The Simons simplex collection: a resource for identification of autism genetic risk factors. Neuron, 68(2), 192–195.
Glazzard, J., & Overall, K. (2012). Living with autistic spectrum disorder: parental experiences of raising a child with autistic spectrum disorders (ASD). Supporting for Learning, 27(1), 37–45.
Gray, D. E. (2002). Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215–222.
Greeff, A. P., & van der Walt, K. J. (2010). Resilience in families with an autistic child. Education and Training in Autism and Developmental Disabilities, 45(3), 347–355.
Hall, H. R., Neely-Barnes, S. L., Graff, J. C., Krcek, T. E., Roberts, R. J., & Hankins, J. S. (2012). Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation. Issues in Comprehensive Pediatric Nursing, 35(1), 24–44.
Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9(4), 377–391.
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.
Higgins, D., Bailey, S., & Pearce, J. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9(2), 125–137.
IBM Corp. (2016). IBM SPSS Statistics for Windows, Version 24.0. Armonk, NY: IBM Corp.
Ilias, K., Cornish, K., Kummar, A. S., Park, M. S.-A., & Golden, K. J. (2018). Parenting stress and resilience in parents of children with autism spectrum disorder (ASD) in Southeast Asia: asystematic review. Frontiers in Psychology, 9, 280.
Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 48(1), 59–71.
Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277.
Karst, J. S., Van Hecke, A. V., Carson, A. M., Stevens, S., Schohl, K., & Dolan, B. (2015). Parent and family outcomes of PEERS: a social skills intervention for adolescents with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(3), 752–765. https://doi.org/10.1007/s10803-014-2231-6.
Keller-Margulis, M. A., Shapiro, E. S., & Hintze, J. M. (2008). Long term diagnostic accuracy of curriculum-based measures in reading and mathematics. School Psychology Review, 37(3), 374–390.
Kissel, S. D., & Nelson, M. W. (2016). Parents’ perceptions of the severity of their child’s autistic behaviors and differences in parental stress, family functioning, and social support. Focus on Autism and Other Developmental Disabilities, 31(2), 152–160.
Kugaya, A., Akechi, T., Okuyama, T., Okamura, H., & Uchitomi, Y. (1998). Screening for psychological distress in Japanese cancer patients. Japanese Journal of Clinical Oncology, 28(5), 333–338.
Lord, C., Rutter, M., DiLavore, P., & Risi, S. (1999). Autism diagnostic observation schedule (ADOS), manual. Los Angeles, CA: Western Psychological Services.
Ludlow, A., Skelly, C., & Rohleder, P. (2012). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, 17(5), 702–711.
Luther, E. H., Canham, D. L., & Cureton, V. Y. (2005). Coping and social support for parents of children with autism. Journal of School Nursing, 21(2), 40–47.
Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11(2), 111–122.
Manning, M. M., Wainwright, L., & Bennett, J. (2011). The double ABCX model of adaptation in racially diverse families with a school-age child with autism. Journal of Autism and Developmental Disorders, 41, 320–331.
May, C., Fletcher, R., Dempsey, I., & Newman, L. (2015). Modeling relations among coparenting quality, autism-specific parenting self-efficacy, and parenting stress in mothers and fathers of children with ASD. Parenting, 15(2), 119–133.
McCubbin, M. A., & McCubbin, H. I. (1993). Families coping with illness: the resiliency model of family stress, adjustment, and adaptation. In C. B. Danielson, B. Hamel-Bissell, & P. Winstead-Fry (Eds), Families, health, & illness: perspectives on coping and intervention (pp. 21–61). St. Louis, MO: Mosby.
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 behaviour of children and adolescents with autism. Autism, 18(5), 502–510.
Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism. A pilot study. Autism, 3(3), 273–285.
Miranda, A., Tarraga, R., Fernandez, I., Colomer, C., & Paster, G. (2015). Parenting stress in families of children with autism spectrum disorder and ADHD. Exceptional Children, 82(1), 81–95.
Mire, S. S., Tolar, T. D., Brewton, C. M., Raff, N. S., & McKee, S. L. (2018). Validating the revised illness perception questionnaire as a measure of parent perceptions of autism spectrum disorder. Journal of Autism and Developmental Disorders, 48, 1761–1779.
Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3(3), 670–684.
Neece, C. L., Green, S. A., & Baker, B. L. (2012). Parenting stress and child behavior problems: a transactional relationship across time. American Journal on Intellectual and Developmental Disabilities, 117(1), 48–66.
O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum disorders. Family Relations, 56(2), 135–146.
Ozonoff, S., Goodlin-Jones, B. L., & Solomon, M. (2005). Evidence-based assessment of autism spectrum disorders in children and adolescents. Journal of Clinical Child and Adolescent Psychology, 34(3), 523–540.
Pallant, J. (2013). SPSS survival manual: a step by step guide to data analysis using IBM SPSS. 5th ed Crows Nest NSW, Australia: Allen & Unwin.
Rao, P. A., & Beidel, D. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33(4), 437–451.
Ravindran, N. R. V. E., & Myers, B. (2012). Cultural influences on perceptions of health, illness, and disability: a review and focus on autism. Journal of Child & Family Studies, 21(2), 311–319.
Razavi, D., Delvaux, N., Farvacques, C., & Robaye, E. (1990). Screening for adjustment disorder and major depressive disorder in cancer in-patients. The British Journal of Psychiatry, 156(1), 79–83.
Renty, J., & Roeyers, H. (2006). Satisfaction with formal support and education for children with autism spectrum disorder: the voices of the parents. Child: Care, Health and Development, 32(3), 371–385.
Rutter, M., Le Couteur, A., & Lord, C. (2003). ADI-R: autism diagnostic interview-revised. Los Angeles, CA: Western Psychological Services.
Schultz, T. R., Stichter, J. P., Herzog, M. J., McGhee, S. D., & Lierheimer, K. (2012). Social competence intervention for parents (SCI-P): comparing outcomes for a parent education program targeting adolescents with ASD. Autism Research and Treatment, 2012, 1–10. Article ID 681465.
Seltzer, M. M., Krauss, M. W., Shattuck, P. T., Orsmond, G., Swe, A., & Lord, C. (2003). The symptoms of autism spectrum disorders in adolescence and adulthood. Journal of Autism and Developmental Disorders, 33, 565–581.
Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt, D., Kring, S., & Lord, C. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1735–1747. https://doi.org/10.1007/s10803-006-0307-7.
Sheras, P. L., Abidin, R. R., & Konold, T. R. (1998). Stress index for parents of adolescents. Lutz, FL: PAR.
Siman-Tov, A., & Kaniel, S. (2011). Stress and personal resource as predictors of the adjustment of parents to autistic children: a multivariate model. Journal of Autism and Developmental Disorders, 41(7), 879–890.
Smith, L. E., Seltzer, M. M., Tager-Flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38(5), 876–889.
Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(2), 167–178.
Smith, L. E., Greenberg, J. S., & Seltzer, M. M. (2012). Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(9), 1818–1826.
Swets, J., Dawes, R., & Monahan, J. (2000). Better decisions through science. Scientific American, 283(4), 82–87.
Vaughn, M. J., & Baier, M. E. M. (1999). Reliability and validity of the relationship assessment scale. The American Journal of Family Therapy, 27, 137–147.
Wang, P., Michaels, C. A., & Day, M. S. (2011). Stress and coping strategies of Chinese families with children with autism and other developmental disabilities. Journal of Autism and Developmental Disorders, 41(6), 783–795.
Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M. A., & Lunsky, Y. (2012). Psychological acceptance and empowerment as mediators of the impact of problem behavior in children with autism spectrum disorders on parent mental health. Autism: The International Journal of Research and Practice, 16, 261–274.
Zaidman-Zait, A., Mirenda, P., Duku, E., Szatmari, P., Georgiades, S., Volden, J., & Thompson, A. (2014). Examination of bidirectional relationships between parent stress and two types of problem behavior in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44, 1908–1917.
Zhang, W., Yan, T., Du, Y., & Liu, X. (2013). Relationship between coping, rumination and posttraumatic growth in mothers of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 7(10), 1204–1210.
We are grateful to all of the families at the participating Simons Simplex Collection (SSC) sites, as well as the principal investigators (A. Beaudet, R. Bernier, J. Constantino, E. Cook, E. Fombonne, D. Geschwind, R. Goin-Kochel, E. Hanson, D. Grice, (A) Klin, D. Ledbetter, C. Lord, C. Martin, D. Martin, R. Maxim, J. Miles, O. Ousley, K. Pelphrey, (B) Peterson, J. Piggot, (C) Saulnier, M. State, W. Stone, J. Sutcliffe, C. Walsh, Z. Warren, E. Wijsman). We are particularly grateful for the generosity of parents who participated in the current study. We appreciate the assistance of the SSC@IAN in recontacting SSC families for recruitment in this project.
This study was supported by a small grant, New Faculty Research Program, from the University of Houston awarded to Dr. Mire.
S.L.M.: assisted with study execution, assisted with data analysis, and lead the writing of the paper. X.L.: conducted analyses, collaborated in writing the paper, particularly regarding analytic methods and results. D.M.T.: co-wrote several sections of the paper, collaborated in editing final manuscript. A.C.M.: collaborated in writing the paper. A.P.D.: collaborated with study design and assisted with final manuscript. S.S.M.: designed and executed the study, assisted with data analyses, co-wrote all sections of the paper.
Conflict of Interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the 1964 Helsinki declaration and its later amendments or comparable ethical standards, as well as with the ethical standards of the University of Houston’s institutional research board (IRB).
Informed consent was obtained from all individual participants included in the study.
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McKee, S.L., Liu, X., Truong, D.M. et al. The Family Adjustment Measure: Identifying Stress in Parents of Youth with Autism. J Child Fam Stud 29, 592–604 (2020). https://doi.org/10.1007/s10826-019-01569-4
- Autism spectrum disorder
- Parenting stress
- Family support
- Family adjustment
- Receiver operating characteristics