Abstract
Although much research has documented the benefits to children with autism of early intensive behavioral intervention (EIBI), little has focused on the impact of EIBI on families. Using a semi-structured format, we interviewed 53 parents whose children had received 2 years of EIBI to obtain detailed first person accounts of the perceived benefits and pitfalls of running a home program, and the impact of EIBI on family life and support systems. In general, parents were positive about EIBI, its benefits for them, their child, and the broader family. Interviews also, however, revealed some of the more challenging aspects of managing home-based EIBI. The implications of these findings for more supportive interventions for families on home programs are discussed.
Similar content being viewed by others
Notes
Names have been changed.
References
Anderson, S. R., Avery, D. L., DiPietro, E. K., Edwards, G. L., & Christian, W. P. (1987). Intensive home-based intervention with autistic children. Education & Treatment of Children, 10, 352–366.
Balazs, T. (2005, May). Home programs for autism and other developmental disabilities. Interventions to support parents and other family members. Paper presented at the international meeting of the Association of Behavior Analysis, Chicago.
Birnbrauer, J. S., & Leach, D. J. (1993). The Murdoch Early Intervention Program after two years. Behaviour Change, 10, 63–74.
Bitsika, V., & Sharpley, C. (2000). Development and testing of the effects of support groups on the well-being of parents of children with autism, II: Specific stress management techniques. Journal of Applied Health Behaviour, 2, 8–15.
Blackledge, J. T., & Hayes, S. C. (2006). Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child & Family Behavior Therapy, 28, 1–18. doi:10.1300/J019v28n01_01.
Bristol, M. M., Gallagher, J. J., & Holt, K. D. (1993). Maternal depressive symptoms in autism. Response to psychoeducational intervention. Rehabilitation Psychology, 38, 3–10.
Bristol, M. M., & Schopler, E. (1984). A developmental perspective on stress and coping in families of autistic children. In J. Blacher (Ed.), Severely handicapped young children and their families (pp. 91–141). New York: Academic Press.
Cattell-Gordon, D., & Cattell-Gordon, D. (1998). The development of an effective applied behavior analysis program for a young child with autism: A parent’s perspective. Infants and Young Children, 10, 79–85.
Celiberti, D. A. (1993). Training parents of children with autism to promote sibling play: Randomized trials of three alternative training interventions. Unpublished doctoral dissertation, Rutgers, The State University of New Jersey, Piscataway, NJ.
Celiberti, D. A., & Harris, S. L. (1993). The effects of play skills intervention for siblings of children with autism. Behavior Therapy, 24, 573–599. doi:10.1016/S0005-7894(05)80319-3.
Dey, I. (1993). Qualitative data analysis. A user friendly guide for social scientists. London: Routledge.
Gold, N. (1993). Depression and social adjustment in siblings of boys with autism. Journal of Autism and Developmental Disorders, 23, 147–163. doi:10.1007/BF01066424.
Green, G. (1996). Early behavioral intervention for autism. What does research tell us? In C. Maurice, G. Green, & S. C. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals (pp. 29–45). Austin, TX: Pro-Ed.
Harris, S. L., & Glasberg, B. (2003). Siblings of children with autism (2nd edn.). Bethesda, MD: Woodbine House.
Hastings, R. P. (2008). Stress in parents of children with autism. In E. McGregor, M. Nunez, K. Williams, & J. Gomez (Eds.), Autism: An integrated view (pp. 303–324). Oxford: Blackwell.
Hastings, R. P. (2003). Behavioral adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: The moderating role of social support. Journal of Autism and Developmental Disorders, 33, 141–150. doi:10.1023/A:1022983209004.
Hastings, R. P., Daley, D., Burns, C., & Beck, A. (2006). Maternal distress and expressed emotion: Cross-sectional and longitudinal relationships with behavior problems of children with intellectual disabilities. American Journal of Mental Retardation, 111, 48–61. doi:10.1352/0895-8017(2006)111[48:MDAEEC]2.0.CO;2.
Hastings, R. P., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders, 31, 327–336. doi:10.1023/A:1010799320795.
Hayes, S. C., Strosahl, K., & Wilson, K. G. (1999). Acceptance and commitment therapy: An experiential approach to behavior change. New York: Guilford Press.
Johnson, E., & Hastings, R. P. (2002). Facilitating factors and barriers to the implementation of intensive home-based behavioral intervention for young children with autism. Child: Care, Health and Development, 28, 123–129. doi:10.1046/j.1365-2214.2002.00251.x.
Koegel, R. L., Schreibman, L., Loos, L. M., Dirlich-Wilheim, H., Dunlap, G., Robbins, F. R., et al. (1992). Consistent stress profiles in mothers of children with autism. Journal of Autism and Developmental Disorders, 22, 205–216. doi:10.1007/BF01058151.
Lobato, D. (1990). Brothers, sisters and special needs. Baltimore, MD: Paul H. Brookes.
Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9. doi:10.1037/0022-006X.55.1.3.
Lovaas, O. I. (1996). The UCLA young autism model of service delivery. In C. Maurice, G. Green, & S. C. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals (pp. 241–248). Austin, TX: Pro-Ed.
Lovaas, O. I. (2002). Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed.
Maurice, C., Green, G., & Foxx, R. (Eds.). (2001). Making a difference: Behavioral intervention for autism. Austin, TX: Pro-Ed.
McEachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation, 97, 359–372.
Meyer, D. J., & Vadasy, P. E. (1994). Sibshops: Workshops for siblings of children with special needs. Baltimore, MD: Paul H. Brookes.
Mudford, O. C., Martin, N. T., Eikeseth, S., & Bibby, P. (2001). Parent-managed behavioral treatment for preschool children with autism: Some characteristics of UK programs. Research in Developmental Disabilities, 22, 173–182. doi:10.1016/S0891-4222(01)00066-X.
Remington, B., Hastings, R., Kovshoff, H., degli Espinosa, F., Jahr, E., Brown, T., Alsford, P., Lemaic, M., & Ward, N. (2007). Early intensive behavioral intervention: Outcomes for children with autism and their parents after two years. American Journal on Mental Retardation, 112, 418–438.
Singer, G. H. S. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal of Mental Retardation, 111, 155–169. doi:10.1352/0895-8017(2006)111[155:MOCSOD]2.0.CO;2.
Smith, T. (1999). Outcome of early intervention for children with autism. Clinical Psychology: Science and Practice, 6, 33–49. doi:10.1093/clipsy/6.1.33.
Smith, T., Buch, G. A., & Gamby, T. E. (2000a). Parent-directed, intensive early intervention for children with pervasive developmental disorder. Research in Developmental Disabilities, 21, 297–309. doi:10.1016/S0891-4222(00)00043-3.
Smith, T., Donahoe, P. A., & Davis, B. J. (2000b). The UCLA young autism project. In S. J. Handleman & S. L. Harris (Eds.), Preschool education programs for children with autism (pp. 29–48). Austin, TX: Pro-Ed.
Smith, T., Groen, A. D., & Wynn, J. W. (2000c). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal of Mental Retardation, 105, 269–285. doi:10.1352/0895-8017(2000)105<0269:RTOIEI>2.0.CO;2.
Smith, T., & Wynn, J. (2002). Considerations for selecting consultants for home-based programs. In O. I. Lovaas (Ed.), Teaching individuals with developmental delays: Basic intervention techniques (pp. 327–31). Austin, TX: Pro-Ed.
Acknowledgments
Preparation of this article was supported by a grant from the Esmée Fairburn Foundation (more details available at http://www.esmeefairburn.org.uk). The opinions presented here are those of the authors and do not necessarily reflect those of the foundation. The authors gratefully acknowledge the parents that agreed to be interviewed and also express their appreciation to Catherine Carr, who completed the inter-rater reliability coding.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Grindle, C.F., Kovshoff, H., Hastings, R.P. et al. Parents’ Experiences of Home-Based Applied Behavior Analysis Programs for Young Children with Autism. J Autism Dev Disord 39, 42–56 (2009). https://doi.org/10.1007/s10803-008-0597-z
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10803-008-0597-z