This symposium from the Association for Behavioral Analysis International annual conference looks at the the role of parents in raising and treating a child with autism, some common sources of parental stress (feeding problems, child safety, multiple role demands) and examines means of productively addressing these stressors.
Parental involvement in the treatment of children with autism has been widely recognized as important, if not vital, to achieving best outcomes. The 2003 National Survey of Children's Health found that parents of children with autism were more likely to score in the "high aggravation level" than parents of children who are typical, or have other special health care needs. This is particularly true of those with the most recent special service needs.Autism Every Day
In addition there has been some community-based research showing that high levels of parenting stress, as perceived and reported by the parents themselves, can have a negative impact on the effectiveness of early intervention beyond the toll taken on the parents themselves.
Minutes: 13:20 (wmv)
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Studies and interventions that only consider child variables and neglect the important and necessary role that the parents play in the treatment and outcome of their child(ren) with autism, may not be giving enough weight to parental stress as a treatment variable. Seeking ways to reduce, rather than increase parental stress may result in more positive results for both parent and child.
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#15 Symposium
5/23/2009
1:00 p.m. - 2:20 p.m.
North 124 B
AUT/DDA; Service Delivery
Targeting Common Sources of Stress Among Parents of Children with Autism Spectrum Disorder: From Stressor Identification to Intervention Implementation.
Chair and Discussant: Emily Huber Callahan (Binghamton University)
Abstract:In the Clinical Practice Guideline, Report of the Recommendations for Autism and Pervasive Developmental Disorders sponsored by the New York State Department of Health Early Intervention Program (1999), parent training is recommended as an important component of comprehensive interventions for children with these disorders. Among the numerous potential benefits of parent training, the recommendation notes that it may be useful in decreasing parental stress. Service providers who work with families of children with Autism Spectrum Disorder (ASD) recognize that a family’s ability to access and maintain resources and support can be a moderator of treatment’s effectiveness. Parental stress, in turn, can impact a family’s ability to access these needed resources. Stress management, therefore, becomes an important component of service provision when working with these families. The goal of this symposium is to present three common sources of parental stress that arise frequently for parents of children with ASD, specifically, feeding problems, safety concerns, and advocacy issues. Discussion will focus on the bidirectional relations of these interventions with overall stress levels and effective methods for teaching parents how to identify, target, and manage stressors in these areas.
The Mealtime Battle Between Parent and Child with ASD.
COURTNEY A POOLER (Binghamton University), Raymond G. Romanczyk (Institute for Child Development)
Abstract:Parents of children with ASD are more likely to report feeding problems and less likely to describe their children as healthy eaters (Lockner, Crowe, & Skipper, 2008). Feeding difficulties, while somewhat common among children who are typically developing, affect up to 80% of children with a developmental disability (Manikam & Perman, 2000). Many of the feeding difficulties identified in children with ASD can be described as behavioral feeding disorders, or sensory-based feeding disorders (Schwarz, 2003). This presentation will identify major feeding concerns of parents of children with ASD. Additionally, common pitfalls of concerned parents desperate to get their child to eat something (rather than nothing) will be discussed. This presentation will highlight methods of helping parents identify their own behavior patterns that may be contributing to or maintaining a child’s maladaptive feeding behavior, as well as useful treatment methods that may be implemented in the home environment. Although parent stress is often not the impetus for treating feeding disorders in a child with ASD, it is hypothesized that by improving feeding behavior, families will experience more ease in meal preparation and increase in utilization of restaurants and other recreational activities, and therefore, a decrease in some of the daily stressors on parents.
When Childproof No Longer Applies: Child Safety and ASD.
RACHEL N STRAUB (Institute for Child Development, Binghamton University-SUNY), Raymond G. Romanczyk (Institute for Child Development)
Abstract:Children with mental or developmental disabilities are more likely to experience nonfatal injury, with greater severity, than non-disabled peers (Xiang, et al., 2005). Further, research has shown that children with impairments in attention, communication, and social interaction, have elevated levels of injury risk (Sherrard, Tonge, & Ozanne-Smith, 2002). For parents of children with ASD, this implies that greater vigilance is needed in order to maintain safety and reduce injury risk both at home and in the community. This presentation will highlight primary safety concerns expressed by parents of children with ASD. Discussion will include approaches to helping parents identify potential hazards and implement preventive methods using both environmental manipulations and applied behavior analysis with their children to reduce their own stress and concern. Additionally, common problems parents may encounter when implementing home safety behavioral programs will be presented, specifically regarding the use and effectiveness of home safety rules. Finally, the bidirectional relations of injury risk and safety program implementation being both the cause and relief of parent stress will be reviewed.
Advocate, Arbiter, Service Provider, or Caregiver? The Silent Struggle of Parenting a Child with ASD.
JULIA BARNES (Binghamton University), Raymond G. Romanczyk (Institute for Child Development)
Abstract:"Inherent in parenting a child with ASD is the adoption of multiple new roles. In addition to the role of nurturing caregiver, these parents often find themselves in the unanticipated position of being the arbiters of decisions regarding their child’s treatment. The Committee on Educational Interventions for Children with Autism, National Research Council (2001) proposed that parents of children with ASD need to be educated in specialized skills and knowledge of scientifically based information about thedisorder and its treatment in order to be effective advocates of their child’s education. In their attempts to realize recommendations like this, however, some parents may feel as though they are being pressured to become experts in best practice, service delivery and the accompanying legal issues. This perception can lead to heightened parental stress, perhaps even beyond that associated with the behavioral excesses and deficits of ASD The aim of this presentation will be to identify potential avenues by which parents incur stress from serving multiple roles with respect to their child’s education. In doing so, the primary objective will be to suggest methods for coping with and, where appropriate, alleviating these sources of stress."
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Related presentation at the Conference
#427 International Symposium
5/25/2009
1:30 p.m. - 2:50 p.m.
North 131 BC
AUT/DDA; Applied Behavior Analysis
BACB CE Offered. CE Instructor: Melissa Olive, Ph.D., BCBA
Outcome of Early Intensive Behavioral Intervention for Children with Autism
Assessing Parent Stress in Families Receiving Early and Intensive Behavioral Intervention.
SVEIN EIKESETH (Akershus College), Diane W Hayward (UK Young Autism Project), Catherine Gale (UK Young Autism Project), Sally A. Morgan (UK Young Autism Project)
Abstract:A frequently asked question is whether Early and Intensive Behavioral Intervention (EIBA) add or relieve family stress. The current study assessed changes in stress in families receiving EIBI. Pre treatment family stress was assessed and compared to family stress one year into treatment. Family stress was assessed using the The Parenting Stress Index (PSI). The PSI assesses stress in the parent-child relationship. It identifies dysfunctional parenting and predicts the potential for parental behavior problems and child adjustment difficulties within the family system. PSI yields a Total Stress Score, plus sub scales in child and parent characteristics. Results show a high level of stress in parent-child relationship pre treatment and a reduction, but yet high level of stress in parent-child relationship one year into treatment. Results suggest that EIBI may relieve stress in parent-child relationship.
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References listed in the Abstracts
p. 215, Role of Families, Conclusions
Educating Children with Autism (2001)
Commission on Behavioral and Social Sciences and Education, National Research Council, National Academy of Sciences
Lockner, D. W., Crowe, T.K., & Skipper, B. J. (2008). Dietary intake and parents' perception of mealtime behaviors in preschool-age children with autism spectrum disorder and in typically developing children. Journal of the American Dietetic Association, 108(8),1360-1363.
doi:10.1016/j.jada.2008.05.003
Manikam, R., & Perman, J.A. (2000). Current literature: Pediatric feeding disorders. Nutrition in Clinical Practice, 15(6), 312-314.
DOI: 10.1177/088453360001500608
Common Elements of Effective Interventions
New York State Department of Health Bureau of Early Intervention's publication Clinical Practice Guideline on Autism/Pervasive Developmental Disorders: Assessment and Intervention for Young children (Age 0-3 years), (1999).
Schwarz, S. (2003). Feeding disorders in children with developmental disabilities. Infants & Young Children, 16(4), 317-330.
Sherrard, J, Tonge, B. J ., & Ozanne-Smith, J. (2002). Injury risk in young people with intellectual disability. Journal of Intellectual Disability Research. 46(1):6-16.
Xiang, H., Stallones, L, Chen G, Hostetler, S.G., & Kelleher, K. (2005). Nonfatal injuring among US children with disabling conditions. American Journal of Public Health, 95(11), 1970-1975.
DOI: 10.2105/AJPH.2004.057505
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For further reading
Osborne, L.A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1092-1103.
DOI: 10.1007/s10803-007-0497-7
Schieve, L.A., Blumberg, S. J., Rice, C., Visser, S.N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119 Supplement, S114-S121
doi:10.1542/peds.2006-2089Q
Slayter, E. M., Garnick, D.W., Kubisiak, J.M., Bishop, C. E., Gilden, D.M., & Hakim, R. B. (2006). Injury prevalence among children and adolescents with mental retardation. Mental Retardation, 44(3), 212-223.
DOI: 10.1352/0047-6765(2006)44[212:IPACAA]2.0.CO;2
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