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Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption. Thus, a new model of intervention evaluation is proposed, which incorporates these factors and better captures the transactional nature of these relationships.
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Abidin, R. R. (1995). Parenting stress index: Professional manual (3rd ed.). Odessa, FL: Psychological Assessment Resources.
American Psychiatric Association DSM-5 Development. (2010). Retrieved from http://www.dsm5.org/.
Brooks-Gunn, J., Berlin, L. J., & Fuligni, A. S. (2000). Early childhood intervention programs: What about the family? In J. P. Shonkoff & S. J. Meisels (Eds.), Handbook of early childhood intervention (2nd ed., pp. 549–577). Cambridge, UK: Camrbridge University Press. CrossRef
Carter, A. S., Martínez-Pedraza, F. L., & Gray, S. O. (2009). Stability and individual change in depressive symptoms among mothers raising young children with ASD: Maternal and child correlates. Journal of Clinical Psychology, N/a-N/a. doi: 10.1002/jclp.20634.
Center for Disease Control and Prevention. (2012, March 30). Prevalence of autism spectrum disorders— Autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Retrieved April 9, 2012, from http://www.cdc.gov/ncbddd/autism/.
Chambless, D. L., Sanderson, W. C., Shoham, V., Johnson, S. B., Pope, K. S., Crits-Christoph, P., et al. (1996). An update on empirically validated therapies. The Clinical Psychologist, 49, 5–18.
Drew, A., Baird, G., Baron-Cohen, S., Cox, A., Slonims, V., Wheelright, S., et al. (2002). A pilot randomised control trial of a parent training intervention for pre-school children with autism: Preliminary findings and methodological challenges. European Child and Adolescent Psychiatry, 11, 266–272. doi: 10.1007/s00787-002-0299-6. PubMedCrossRef
Dritschel, B., Wisely, M., Goddard, L., Robinson, S., & Howlin, P. (2010). Judgements of self-understanding in adolescents with asperger syndrome. 1–10. doi: 10.1177/1362361310368407.
Gau, S. S., Chou, M., Chiang, H., Lee, J., Wong, C., Chou, W., & Wu, Y. (2011). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 1–8. doi: 10.1016/j.rasd.2011.05.007.
Gerard, A. B. (1994). Parent-child relationship inventory (PCRI). Los Angeles, CA: Western Psychological Services.
Giallo, R., Wood, C.E., Jellett, R., & Porter, R. (2011). Fatigue, wellbeing and parental self-efficacy in mothers of children with an autism spectrum disorder. Autism, 1–16. doi: 10.1177/1362361311416830.
Granger, S., Rivieres-Pigeon, C. D., Sabourin, G., & Forget, J. (2012). Mothers’ reports of their involvement in early intensive behavioral intervention. Topics in Early Childhood Special Education, 32(2), 68–77. doi: 10.1177/0271121410393285.
Greenspan, S. I., & Wieder, S. (1997). Developmental patterns and outcomes in infants and children with disorders in relating and communicating: A chart review of 200 cases of children with autism spectrum diagnoses. The Journal of Developmental and Learning Disorders, 1(1), 1–38.
Greenspan, S. I., & Wieder, S. (1999). A functional developmental approach to autistic spectrum disorders. Journal of the Association for Persons with Severe Handicaps, 24(3), 147–161. CrossRef
Hartley, S. L., Barker, E. T., Seltzer, M. M., Greenberg, J. S., & Floyd, F. J. (2011). Marital satisfaction and parenting experiences of mothers and fathers of adolescents and adults with autism. American Association on Intellectual and Developmental Disabilities, 116(1), 81–95. doi: 10.1352/1944-7558-116.1.81. CrossRef
Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50(12), 874–882. doi: 10.1111/j.1365-2788.2006.00904.x. PubMedCrossRef
Hoagwood, K., Jensen, P. S., Petti, T., & Burns, B. J. (1996). Outcomes of mental health care for children and adolescents: I. A comprehensive conceptual model. Journal of the American Academy of Child and Adolescent Psychiatry, 35(8), 1055–1063. doi: 10.1097/00004583-199608000-00017. PubMedCrossRef
Hoffman, C. D., Sweeney, D. P., Hodge, D., Lopez-Wagner, M. C., & Looney, L. (2009). Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24(3), 178–187. doi: 10.1177/1088357609338715. CrossRef
Johnson, S. A., Filliter, J. H., & Murphy, R. R. (2009). Discrepancies between self- and parent-perceptions of autistic traits and empathy in high functioning children and adolescents on teh autism spectrum. Journal of Autism and Developmental Disorders, 39, 1706–1714. doi: 10.1007/s10803-009-0809-1. CrossRef
Kaiser, A. P., & Hancock, T. B. (2003). Teaching parents new skills to support their young children’s development. Infants and Young Children, 16(1), 9–21. CrossRef
Kamphaus, R. W., & Reynolds, C. R. (2006). PRQ: Parenting relationship questionnaire manual. Minneapolis, MN: Pearson.
Kazdin, A. E., & Weisz, J. R. (2003). Evidence-based psychotherapies for children and adolescents. New York: Guilford Press.
Keen, D., Couzens, D., Muspratt, S., & Rodger, S. (2010). The effects of a parent-focused intervention for children with a recent diagnosis of autism spectrum disorder on parenting stress and competence. Research in Autism Spectrum Disorder, 4, 229–241. doi: 10/1016/j.rasd.2009.09.009. CrossRef
Kheir, N., Ghoneim, O., Sandridge, A. L., Al-Ismail, M., Hayder, S., & Al-Rawi, F. (2012). Quality of life of caregivers of children with autism in Qatar. Autism, 1–6. doi: 10.1177/1362361311433648.
Knott, F., Dunlop, A., & Mackay, T. (2006). Living with asd: How do children and their parents assess their difficulties with social interaction and understanding? Autism¸10(6), 609–617. doi: 10.1177/1362361306068510.
Koegel, R. L., Bimbela, A., & Schreibman, L. (1996). Collateral effects of parent training on family interactions. Journal of Autism and Developmental Disorders, 3, 347–359. CrossRef
Koegel, R. L., Koegel, L. K., & Brookman, L. I. (2003). Empirically supported pivotal response interventions for children with autism. In A. E. Kazdin & J. R. Weisz (Eds.), Evidence-based psychotherapies for children and adolescents (pp. 341–357). New York: Guilford Press.
Koegel, R. L., Koegel, L. K., & Carter, C. M. (1999b). Pivotal teaching interactions for children with autism. School Psychology Review, 28(4), 576–594.
Koenig, K., Los Reyes, A., Cicchetti, D., Scahill, L., & Klin, A. (2009). Group intervention to promote social skills in school-age children with pervasive developmental disorders: Reconsidering efficacy. Journal of Autism and Developmental Disorders, 39(8), 1163–1172. doi: 10.1007/s10803-009-0728-1. PubMedCrossRef
Krauss, M. W. (2000). Family assessment within early intervention programs. In J. P. Shonkoff & S. J. Meisels (Eds.), Handbook of early childhood intervention (2nd ed., pp. 290–308). Cambridge, UK: Cambridge University Press. CrossRef
Laugeson, E. A., & Frankel, F. H. (2010). Social skills for teenagers with developmental and autism spectrum disorders: The PEERS treatment manual. New York: Routledge.
Leef, J. (2005). A clinical intervention program for children with asperger syndrome and their parents: Promoting children’s social skills and parents’ self-confidence. The Autism NewsLink, 14–15.
Little, L. (2002). Differences in stress and coping for mothers and fathers of children with asperger’s syndrome and nonverbal learning disorders. Pediatric Nursing, 28(6), 565–570. PubMed
Little, L., & Clark, R. R. (2006). Wonders and worries of parenting a child with asperger syndrome and nonverbal learning disorder. The American Journal of Maternal Child Nursing, 31(1), 39–44. CrossRef
Lord, C., & Bishop, S. L. (2010). Autism spectrum disorders: Diagnosis, prevalence, and services for children and families. Society for Research in Child Development, 24(2), 1–21.
Losh, M., Childress, D., Lam, K., & Piven, J. (2008). Defining key features of the broad autism phenotype: A comparison across parents of multiple- and single-incidence autism families. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 147B(4), 424–433. doi: 10.1002/ajmg.b.30612. CrossRef
Lovaas, O. I., & Smith, T. (2003). Early and intensive behavioral intervention for autism. In A. E. Kazdin & J. R. Weisz (Eds.), Evidence-based psychotherapies for children and adolescents (pp. 325–340). New York: Guilford Press.
Mackintosh, V. G., Goin-Kochel, R. P., & Myers, B. J. (2012). “What do you like/dislike about the treatments you’re currently using?”: A qualitative study of parents of children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 27(1), 51–60. doi: 10.1177/1088357611423542. CrossRef
Mandell, D. S., Xie, M., Morales, K., Lawer, L., McCarthy, M., & Marcus, S. C. (2011). The interplay of outpatient services and psychiatric hospitalization among Medicaid-enrolled children with autism spectrum disorders. Archives of Pediatric and Adolescent Medicine, 166(1), 68–73. CrossRef
Minuchin, S., & Fishman, H. C. (1981). Family therapy techniques. Cambridge, MA: Harvard University Press.
Morrison, J. Q., Sansosti, F. J., & Hadley, W. M. (2009). Parent perceptions of the anticipated needs and expectations for support for their college-bound students with asperger’s syndrome. Journal of Postsecondary Education and Disability, 22(2), 78–87.
Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment in quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5(22). doi: 10.1186/1477-7525-5-22.
Nock, M. K., & Kazdin, A. E. (2001). Parent expectancies for child therapy: Assessment and relation to participation in treatment. Journal of Child and Family Studies, 10(2), 155–180. CrossRef
Oosterling, I., Visser, J., Swinkels, S., Rommelse, N., Donders, R., Woudenberg, T., et al. (2010). Randomized controlled trial of the focus parent training for toddlers with autism: 1-year outcome. Journal of Autism and Developmental Disorders, 40, 1447–1458. doi: 10.1007/s10803-010-1004-0. PubMedCrossRef
Orsmond, G. I., Lin, L., & Seltzer, M. M. (2007). Mothers of adolescents and adults with autism: Parenting multiple children with disabilities. In S. J. Taylor (Ed.) Intellectual and Developmental Disabilities, 45(4), 257–270. doi: 10.1352/1934-9556(2007)45[257:MOAAAW]2.0.CO;2.
Pillay, M., Alderson-Day, B., Wright, B., Williams, C., & Urwin, B. (2011). Autism spectrum conditions—enhancing nurture and development (ASCEND): An evaluation of intervention support groups for parents. Clinical Child Psychology and Psychiatry, 16(1), 5–20. doi: 10.1177/1359104509340945. PubMedCrossRef
Remington, B., Hastings, R. P., Kovshoff, H., Degli Espinosa, F., Jahr, E., Brown, T., et al. (2007). Early intensive behavioral intervention: Outcomes for children with autism and their parents after two years. American Journal on Mental Retardation, 112(6), 418. doi: 10.1352/0895-8017(2007)112[418:EIBIOF]2.0.CO;2. PubMedCrossRef
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, 1–10. doi: 10.1155/2011/395190.
Roberts, D., & Pickering, N. (2010). Parent training programme for autism spectrum disorders: An evaluation. Community Practitioner, 83(10), 27–30. PubMed
Rodrigue, J. R., Morgan, S. B., & Geffken, G. (1990). Families of autistic children: Psychological functioning of mothers. Journal of Clinical Child Psychology, 19(4), 371–379. CrossRef
Sameroff, A. J., & Fiese, B. H. (2000). Transactional regulation: The developmental ecology of early intervention. In J. P. Shonkoff & S. J. Meisels (Eds.), Handbook of early childhood intervention (2nd ed., pp. 135–159). Cambridge, UK: Cambridge University Press. CrossRef
Sansosti, F. J. (2010). Teaching social skills to children with autism spectrum disorders using tiers of support: A guide for school-based professionals. Psychology in the Schools, 47(3), 257–281.
Sawyer, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., & Harchak, T. F. (2010). Time demands of caring for children with autism: What are the implications for maternal mental health? Journal of Autism and Developmental Disorders, 40, 620–628. doi: 10.1007/s10803-009-0912-3. PubMedCrossRef
Schaaf, R. C., Toth-Cohen, S., Johnson, S. L., Outten, G., & Benevides, T. W. (2011). The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family. Autism, 1–17. doi: 10.1177/1352351310386505.
Schertz, H. H., Baker, C., Hurwitz, S., and Benner, L. (2010). Principles of early intervention reflected in toddler research in autism spectrum disorders. Topics in Early Childhood Special Education, 1–18.
Schieve, L. A., Boulet, S. L., Kogan, M. D., Yeargin-Allsopp, M., Boyle, C. A., Visser, S. N., et al. (2011). Parenting aggravation and autism spectrum disorders: 2007 national survey of children’s health. Disability and Health Journal, 4, 143–152. doi: 10.1016/j.dhjo.2010.09.002. PubMedCrossRef
Schopler, E., & Reichler, R. (1981). Parents as co-therapists in the treatment of psychotic children. Journal of Autism and Childhood Schizophrenia, 1(1), 87–102. CrossRef
Schreiber, C. (2010). Social skills interventions for children with high-functioning autism spectrum disorders. Journal of Positive Behavior Interventions, 13, 49–62. doi: 10.1177/1098300709359027.
Sharpley, C. F., Bitsika, V., & Efremidis, B. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. Journal of Intellectual and Developmental Disability, 22(1), 19–28. doi: 10.1080/13668259700033261. CrossRef
Sheras, P. L., Abidin, R. R., & Konold, T. R. (1998). SIPA, stress index for parents of adolescents: Professional manual. Odessa, FL: Psychological Assessment Resources.
Singer, G. S. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 111(3), 155. doi: 10.1352/0895-8017(2006)111[155:MOCSOD]2.0.CO;2. PubMedCrossRef
Singh, N. N., Lancioni, G. E., Winton, A. S., Fisher, B. C., Wahler, R. G., Mcaleavey, K., et al. (2006). Mindful parenting decreases aggression, noncompliance, and self-injury in children with autism. Journal of Emotional and Behavioral Disorders, 14(3), 169–177. doi: 10.1177/10634266060140030401. CrossRef
Smith, I. M., Koegel, R. L., Koegel, L. K., Openden, D. A., Fossum, K. L., & Bryson, S. E. (2010a). Effectiveness of a novel community-based early intervention model for children with autistic spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 115(6), 504–523. doi: 10.1352/1944-7558-115.6.504. PubMedCrossRef
Smith, T., & Lovaas, I. O. (1998). Intensive and early behavioral intervention with autism: The UCLA young autism project. Infants and Young Children, 10(3), 67–78.
Solomon, M., Goodlin-Jones, B. L., & Anders, T. F. (2004). A social adjustment enhancement intervention for high functioning autism, asperger’s syndrome, and pervasive developmental disorder nos. Journal of Autism and Developmental Disorders, 34(6), 649–668. doi: 10.1007/s10803-004-5286-y. PubMedCrossRef
Stoddart, K. P. (1999). Adolescents with asperger syndrome. Autism, 3(3), 255–271. CrossRef
The MTA Cooperative Group. (1999). Moderators and mediators of treatment response for children with attention-deficit/hyperactivity disorder: The multimodal treatment study of children with attention-deficit/hyperactivity disorder. Archives of General Psychiatry, 56, 1088–1096. CrossRef
Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006). Effects of parental mental health of an education and skills training program for parents of young children with autism: A randomized controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 45(5), 561–569. doi: 10.1097/01.chi.0000205701.48324.26. PubMedCrossRef
Volkmar, F. R., & Pauls, D. (2003). Autism. The Lancet, 362, 1133–1141. CrossRef
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, 1303–1312. CrossRef
Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 1–14. doi: 10.1177/1362361311422708.
White, S. W., Albano, A. M., Johnson, C. R., Kasari, C., Ollendick, T., Klin, A., et al. (2010). Development of a cognitive-behavioral intervention program to treat anxiety and social deficits in teens with high-functioning autism. Clinical Child and Family Psychology Review, 13, 77–90. doi: 10.1007/s10567-009-0062-3. PubMedCrossRef
Wood, J. J., Drahota, A., Sze, K., Dyke, M., Decker, K., Fujii, C., et al. (2009). Brief report: Effects of cognitive-behavioral therapy on parent-reported autism symptoms in school-age children with high-functioning autism. Journal of Autism and Developmental Disorders, 39(11), 1608–1612. doi: 10.1007/s10803-009-0791-7. PubMedCrossRef
Yamada, A., Suzuki, M., Kato, M., Suzuki, M., Tanaka, S., Shindo, T., et al. (2007). Emotional distress and its correlates among parents of children with pervasive developmental disorders. Psychiatry and clinical neurosciences, 61, 651–657. doi: 10.1111/j.1440-1819.2007.01736.x. PubMedCrossRef
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