J Autism Dev Disord (2015) 45:269–271 DOI 10.1007/s10803-014-2196-5
LETTER TO THE EDITOR
Rapid-Response Parenting Intervention in Diagnostic Centers as a Patient-Centered Innovation for Autism Spectrum Disorders Stephen Edward McMillin • Margaret W. Bultas Jennifer Wilmott • Sarah Grafeman • Debra H. Zand
•
Published online: 27 July 2014 Ó Springer Science+Business Media New York 2014
Abstract Parents of children newly diagnosed with autism spectrum disorders are a high-need population for whom skills-based parenting interventions likely help. Diagnostic centers are compelling locations to deliver parenting interventions because families are served in an accessible location and at a time they receive overwhelming treatment recommendations. Additionally, behavioral interventions in these settings may be especially effective in helping parents feel an early sense of mastery of disruptive child behaviors and enable families grappling with this diagnosis to be proactive and build resilience. Providing parenting interventions in diagnostic centers is a promising service delivery innovation and deserves expanded piloting and testing.
S. E. McMillin (&) School of Social Work, Saint Louis University, Tegeler Hall, 3550 Lindell Blvd., Saint Louis, MO 63103, USA e-mail: [email protected] M. W. Bultas School of Nursing, Saint Louis University, St. Louis, MO, USA e-mail: [email protected] J. Wilmott Departments of Biostatistics and Epidemiology in the College for Public Health and Social Justice, Saint Louis University, St. Louis, MO, USA e-mail: [email protected] S. Grafeman SSM Cardinal Glennon Children’s Medical Center, St. Louis, MO, USA e-mail: [email protected] D. H. Zand Division of Developmental Pediatrics, Department of Pediatrics, School of Medicine, Saint Louis University, St. Louis, MO, USA e-mail: [email protected]
Keywords Autism spectrum disorders Early intensive behavioral intervention Early intervention Parenting Parent education Parent stress
Introduction We write to advocate for expanded funding and testing of behavioral parenting interventions that can be rapidly implemented at critical times, in accessible practice settings, to families in which a parent receives a diagnosis of autism spectrum disorder (ASD) for their young child. Diagnostic clinics and medical centers are opportune practice settings for such services. Behavioral parenting interventions that can be implemented rapidly (e.g., within a month of diagnosis) and at a time of great parental stress (e.g., when a child’s disruptive behavior has been newly labeled ‘‘autistic’’) are important innovations requiring additional attention and testing to advance implementation and dissemination of evidence-based services. We envision such services as an avenue for quickly engaging families to manage acute, disruptive child behaviors even while their children undergo ongoing ASD assessment, thus fostering parental competence and resilience while reducing parental stress. Children with autism frequently present with challenging and even disruptive behaviors that contribute to great parental stress (Estes et al. 2013; Zand et al. 2013) and diminished parental quality of life (Cappe et al. 2011; Yamada et al. 2012). Early parenting intervention is important because, in addition to the shock and apprehension such a diagnosis produces, parents of children newly diagnosed with ASD receive numerous, overwhelming referrals and recommendations for diverse treatments and interventions. Zand et al. (2013) note that
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current treatment protocols for ASD are multifaceted, occur across service sectors, can be lengthy and timeconsuming, often require parental involvement and interaction numerous times a day, and can have the effect of turning the family home into the primary site for service delivery whether or not parents are ready for this transformation of their home. Research also suggests that too many ancillary services may distract from the efficacy of a targeted parenting intervention focused on a specific disruptive behavior (Kaminski et al. 2008). There is also a serious problem in the current availability of services, in which families often receive no intervention for months after receiving an ASD diagnosis for their child and then, when services become available, are often expected immediately to be able to commit to enormous amounts of intensive, structured, behavioral treatments for their children each week. Brief, rapidlyinitiated interventions at the diagnostic center focused on the parents’ identified concerns can help parents quickly self-regulate and organize their own behavior to parent with consistency even while the child’s assessment continues. Helping parents quickly address a single disruptive child behavior may seem like a short-term result, but this strategy holds the promise to increase parental efficacy and resilience with a rapid first success which helps parents see that their children’s disruptive behavior is modifiable. This can build parental buy-in and readiness for future, intensive, and long-term interventions. Rapidly initiating a short-term parenting intervention in the clinic to target the child behavior the parent identifies as most disruptive lays a foundation for successful future work while increasing parenting knowledge and consistency and helping to stabilize the family home after initial diagnosis. Brief, targeted behavioral interventions delivered by parents with young children diagnosed with ASD have been found to improve parent–child interaction and social communication (Dawson and Burner 2011). Parents especially benefit when the interventionist clearly communicates to parents that they are the experts on their child diagnosed with ASD and that parent feedback for the interventionist is eagerly sought (Brookman-Frazee et al. 2009; Steiner et al. 2012). Clinical settings engaged in the regular diagnosis of autism are a natural and logical focal point for rapid-response parenting intervention as diagnosticians also seek parent feedback. Diagnosed children return for numerous clinic and follow-up visits, and each visit is a potential point of entry for parenting intervention, especially for brief, structured parenting consultation in which the intervention can easily parallel and be scheduled with the child’s other medical appointments and assessments. Moreover, there are stark disparities based on race and socio-economic status in what treatment families can access, so adding parenting interventions to the typical
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J Autism Dev Disord (2015) 45:269–271
diagnostic setting offers the promise of reaching more families in need. Early experiences of success in evidencebased parenting interventions are good for providers as well as parents because they may support sustained use and faithful program implementation over time (Shapiro et al. 2014). Diagnostic settings within academic medical centers are especially well-positioned to conduct ongoing research on brief parenting interventions for ASD that will contribute to knowledge of effective practice. Such centers have an enhanced ability to leverage interdisciplinary teams made up of pediatricians, clinical and developmental psychologists, nurse practitioners, social workers, and community public health workers. These researchers will be able to plan, conduct, and evaluate pilot studies and ongoing intervention studies as well as make adaptations to parenting interventions based on the practice-based evidence they discover and the data they analyze. Our recommendations are not without limitations. Spreckley and Boyd (2009) suggest that there is inadequate evidence that behavioral interventions such as direct behavior management for the child or parent education and training have better outcomes than treatment as usual in working with families with children diagnosed with autism. However, Reichow (2012) critiques this systematic review and meta-analysis as including extensive behavioral treatments in comparison groups which likely skew the null findings. While many academic medical centers are also diagnostic settings, they often lack entrepreneurial culture and training in the design of new models of service delivery (Ostrovsky and Barnett 2014). Buy-in from upper-level administrators is also essential to ensure ongoing resources and support (Asgary-Eden and Lee 2012). Efforts to shift a paradigm of healthcare delivery for autism will likely require social entrepreneurs and organizational champions (Wood et al. 2014) who can protect parenting intervention pilot programs from disruptions that can contaminate data and impair effective service delivery. Programs will need systemic, structural supports and technical assistance to permit flexible adaptation of evidence-based interventions while guarding against inappropriate blending of the target intervention with other untested or contraindicated interventions (Sanders et al. 2009; Sanders and Mazzucchelli 2013; Shapiro et al. 2014). We conclude by emphasizing that parents of children newly diagnosed with autism form a high-need population for whom skills-based parenting interventions can help develop mastery of disruptive child behaviors and build family resilience as families adapt to the needs of the newly diagnosed child. Diagnostic centers are compelling settings for parenting interventions serving families where a child has been newly diagnosed with ASD because these
J Autism Dev Disord (2015) 45:269–271
centers have interdisciplinary staff teams who can serve children and families through post-diagnostic services and ongoing early assessment. These parenting interventions serving families with a child who has received an ASD diagnosis are a promising service delivery innovation and deserve expanded funding and testing. Acknowledgments This research was supported by funding from Saint Louis University School of Medicine, Department of Pediatrics. Conflict of interest
The authors declare no conflicts of interest.
References Asgary-Eden, V., & Lee, C. M. (2012). Implementing an evidencebased parenting program in community agencies: What helps and what gets in the way? Administration and Policy in Mental Health and Mental Health Services Research, 39(6), 478–488. doi:10.1007/s10488-011-0371-y. Brookman-Frazee, L., Vismara, L., Drahota, A., Stahmer, A., & Openden, D. (2009). Parent training interventions for children with autism spectrum disorders. In J. L. Matson (Ed.), Applied behavior analysis for children with autism spectrum disorders (pp. 237–257). New York: Springer. doi:10.1007/978-1-44190088-3_14. 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. doi:10.1007/ s11136-011-9861-3. Dawson, G., & Burner, K. (2011). Behavioral interventions in children and adolescents with autism spectrum disorder: A review of recent findings. Current Opinion in Pediatrics, 23(6), 616–620. doi:10.1097/MOP.0b013e32834cf082. Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., et al. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain and Development, 35(2), 133–138. doi:10.1016/j.braindev. 2012.10.004. Kaminski, J. K., Valle, L., Filene, J., & Boyle, C. (2008). A metaanalytic review of components associated with parent training
271 program effectiveness. Journal of Abnormal Child Psychology, 36(4), 567–589. doi:10.1007/s10802-007-9201-9. Ostrovsky, A., & Barnett, M. (2014). Accelerating change: Fostering innovation in healthcare delivery at academic medical centers. Healthcare, 2(1), 9–13. doi:10.1016/j.hjdsi.2013.12.001. Reichow, B. (2012). Overview of meta-analyses on early intensive behavioral intervention for young children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(4), 512–520. doi:10.1007/s10803-011-1218-9. Sanders, M. R., & Mazzucchelli, T. G. (2013). The promotion of selfregulation through parenting interventions. Clinical Child and Family Psychology Review, 16(1), 1–17. doi:10.1007/s10567013-0129-z. Sanders, M. R., Prinz, R. J., & Shapiro, C. J. (2009). Predicting utilization of evidence-based parenting interventions with organizational, service-provider and client variables. Administration and Policy in Mental Health and Mental Health Services Research, 36(2), 133–143. doi:10.1007/s10488-009-0205-3. Shapiro, C. J., Prinz, R. J., & Sanders, M. R. (2014). Sustaining use of an evidence-based parenting intervention: Practitioner perspectives. Advance online publication. Journal of Child and Family Studies. doi:10.1007/s10826-014-9965-9. Spreckley, M., & Boyd, R. (2009). Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: A systematic review and meta-analysis. The Journal of Pediatrics, 154(3), 338–344. doi:10.1016/j.jpeds.2008.09.012. Steiner, A. M., Koegel, L. K., Koegel, R. L., & Ence, W. A. (2012). Issues and theoretical constructs regarding parent education for autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(6), 1218–1227. doi:10.1007/s10803-011-1194-0. Wood, S., Gangadharan, S., Tyrer, F., Gumber, R., Devapriam, J., Hiremath, A., et al. (2014). Successes and challenges in the implementation of care pathways in an intellectual disability service: Health professionals’ experiences. Journal of Policy and Practice in Intellectual Disabilities, 11(1), 1–7. doi:10.1111/ jppi.12063. Yamada, A., Kato, M., Suzuki, M., Suzuki, M., Watanabe, N., Akechi, T., et al. (2012). Quality of life of parents raising children with pervasive developmental disorders. BMC Psychiatry, 12(1), 119. doi:10.1186/1471-244X-12-119. Zand, D. H., Braddock, B., Baig, W., Deasy, J., & Maxim, R. (2013). Role of pediatricians in fostering resilience in parents of children with autism spectrum disorders. The Journal of Pediatrics, 163(6), 1769–1771. doi:10.1016/j.jpeds.2013.06.074.
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LETTER TO THE EDITOR
Rapid-Response Parenting Intervention in Diagnostic Centers as a Patient-Centered Innovation for Autism Spectrum Disorders Stephen Edward McMillin • Margaret W. Bultas Jennifer Wilmott • Sarah Grafeman • Debra H. Zand
•
Published online: 27 July 2014 Ó Springer Science+Business Media New York 2014
Abstract Parents of children newly diagnosed with autism spectrum disorders are a high-need population for whom skills-based parenting interventions likely help. Diagnostic centers are compelling locations to deliver parenting interventions because families are served in an accessible location and at a time they receive overwhelming treatment recommendations. Additionally, behavioral interventions in these settings may be especially effective in helping parents feel an early sense of mastery of disruptive child behaviors and enable families grappling with this diagnosis to be proactive and build resilience. Providing parenting interventions in diagnostic centers is a promising service delivery innovation and deserves expanded piloting and testing.
S. E. McMillin (&) School of Social Work, Saint Louis University, Tegeler Hall, 3550 Lindell Blvd., Saint Louis, MO 63103, USA e-mail: [email protected] M. W. Bultas School of Nursing, Saint Louis University, St. Louis, MO, USA e-mail: [email protected] J. Wilmott Departments of Biostatistics and Epidemiology in the College for Public Health and Social Justice, Saint Louis University, St. Louis, MO, USA e-mail: [email protected] S. Grafeman SSM Cardinal Glennon Children’s Medical Center, St. Louis, MO, USA e-mail: [email protected] D. H. Zand Division of Developmental Pediatrics, Department of Pediatrics, School of Medicine, Saint Louis University, St. Louis, MO, USA e-mail: [email protected]
Keywords Autism spectrum disorders Early intensive behavioral intervention Early intervention Parenting Parent education Parent stress
Introduction We write to advocate for expanded funding and testing of behavioral parenting interventions that can be rapidly implemented at critical times, in accessible practice settings, to families in which a parent receives a diagnosis of autism spectrum disorder (ASD) for their young child. Diagnostic clinics and medical centers are opportune practice settings for such services. Behavioral parenting interventions that can be implemented rapidly (e.g., within a month of diagnosis) and at a time of great parental stress (e.g., when a child’s disruptive behavior has been newly labeled ‘‘autistic’’) are important innovations requiring additional attention and testing to advance implementation and dissemination of evidence-based services. We envision such services as an avenue for quickly engaging families to manage acute, disruptive child behaviors even while their children undergo ongoing ASD assessment, thus fostering parental competence and resilience while reducing parental stress. Children with autism frequently present with challenging and even disruptive behaviors that contribute to great parental stress (Estes et al. 2013; Zand et al. 2013) and diminished parental quality of life (Cappe et al. 2011; Yamada et al. 2012). Early parenting intervention is important because, in addition to the shock and apprehension such a diagnosis produces, parents of children newly diagnosed with ASD receive numerous, overwhelming referrals and recommendations for diverse treatments and interventions. Zand et al. (2013) note that
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current treatment protocols for ASD are multifaceted, occur across service sectors, can be lengthy and timeconsuming, often require parental involvement and interaction numerous times a day, and can have the effect of turning the family home into the primary site for service delivery whether or not parents are ready for this transformation of their home. Research also suggests that too many ancillary services may distract from the efficacy of a targeted parenting intervention focused on a specific disruptive behavior (Kaminski et al. 2008). There is also a serious problem in the current availability of services, in which families often receive no intervention for months after receiving an ASD diagnosis for their child and then, when services become available, are often expected immediately to be able to commit to enormous amounts of intensive, structured, behavioral treatments for their children each week. Brief, rapidlyinitiated interventions at the diagnostic center focused on the parents’ identified concerns can help parents quickly self-regulate and organize their own behavior to parent with consistency even while the child’s assessment continues. Helping parents quickly address a single disruptive child behavior may seem like a short-term result, but this strategy holds the promise to increase parental efficacy and resilience with a rapid first success which helps parents see that their children’s disruptive behavior is modifiable. This can build parental buy-in and readiness for future, intensive, and long-term interventions. Rapidly initiating a short-term parenting intervention in the clinic to target the child behavior the parent identifies as most disruptive lays a foundation for successful future work while increasing parenting knowledge and consistency and helping to stabilize the family home after initial diagnosis. Brief, targeted behavioral interventions delivered by parents with young children diagnosed with ASD have been found to improve parent–child interaction and social communication (Dawson and Burner 2011). Parents especially benefit when the interventionist clearly communicates to parents that they are the experts on their child diagnosed with ASD and that parent feedback for the interventionist is eagerly sought (Brookman-Frazee et al. 2009; Steiner et al. 2012). Clinical settings engaged in the regular diagnosis of autism are a natural and logical focal point for rapid-response parenting intervention as diagnosticians also seek parent feedback. Diagnosed children return for numerous clinic and follow-up visits, and each visit is a potential point of entry for parenting intervention, especially for brief, structured parenting consultation in which the intervention can easily parallel and be scheduled with the child’s other medical appointments and assessments. Moreover, there are stark disparities based on race and socio-economic status in what treatment families can access, so adding parenting interventions to the typical
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J Autism Dev Disord (2015) 45:269–271
diagnostic setting offers the promise of reaching more families in need. Early experiences of success in evidencebased parenting interventions are good for providers as well as parents because they may support sustained use and faithful program implementation over time (Shapiro et al. 2014). Diagnostic settings within academic medical centers are especially well-positioned to conduct ongoing research on brief parenting interventions for ASD that will contribute to knowledge of effective practice. Such centers have an enhanced ability to leverage interdisciplinary teams made up of pediatricians, clinical and developmental psychologists, nurse practitioners, social workers, and community public health workers. These researchers will be able to plan, conduct, and evaluate pilot studies and ongoing intervention studies as well as make adaptations to parenting interventions based on the practice-based evidence they discover and the data they analyze. Our recommendations are not without limitations. Spreckley and Boyd (2009) suggest that there is inadequate evidence that behavioral interventions such as direct behavior management for the child or parent education and training have better outcomes than treatment as usual in working with families with children diagnosed with autism. However, Reichow (2012) critiques this systematic review and meta-analysis as including extensive behavioral treatments in comparison groups which likely skew the null findings. While many academic medical centers are also diagnostic settings, they often lack entrepreneurial culture and training in the design of new models of service delivery (Ostrovsky and Barnett 2014). Buy-in from upper-level administrators is also essential to ensure ongoing resources and support (Asgary-Eden and Lee 2012). Efforts to shift a paradigm of healthcare delivery for autism will likely require social entrepreneurs and organizational champions (Wood et al. 2014) who can protect parenting intervention pilot programs from disruptions that can contaminate data and impair effective service delivery. Programs will need systemic, structural supports and technical assistance to permit flexible adaptation of evidence-based interventions while guarding against inappropriate blending of the target intervention with other untested or contraindicated interventions (Sanders et al. 2009; Sanders and Mazzucchelli 2013; Shapiro et al. 2014). We conclude by emphasizing that parents of children newly diagnosed with autism form a high-need population for whom skills-based parenting interventions can help develop mastery of disruptive child behaviors and build family resilience as families adapt to the needs of the newly diagnosed child. Diagnostic centers are compelling settings for parenting interventions serving families where a child has been newly diagnosed with ASD because these
J Autism Dev Disord (2015) 45:269–271
centers have interdisciplinary staff teams who can serve children and families through post-diagnostic services and ongoing early assessment. These parenting interventions serving families with a child who has received an ASD diagnosis are a promising service delivery innovation and deserve expanded funding and testing. Acknowledgments This research was supported by funding from Saint Louis University School of Medicine, Department of Pediatrics. Conflict of interest
The authors declare no conflicts of interest.
References Asgary-Eden, V., & Lee, C. M. (2012). Implementing an evidencebased parenting program in community agencies: What helps and what gets in the way? Administration and Policy in Mental Health and Mental Health Services Research, 39(6), 478–488. doi:10.1007/s10488-011-0371-y. Brookman-Frazee, L., Vismara, L., Drahota, A., Stahmer, A., & Openden, D. (2009). Parent training interventions for children with autism spectrum disorders. In J. L. Matson (Ed.), Applied behavior analysis for children with autism spectrum disorders (pp. 237–257). New York: Springer. doi:10.1007/978-1-44190088-3_14. 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. doi:10.1007/ s11136-011-9861-3. Dawson, G., & Burner, K. (2011). Behavioral interventions in children and adolescents with autism spectrum disorder: A review of recent findings. Current Opinion in Pediatrics, 23(6), 616–620. doi:10.1097/MOP.0b013e32834cf082. Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., et al. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain and Development, 35(2), 133–138. doi:10.1016/j.braindev. 2012.10.004. Kaminski, J. K., Valle, L., Filene, J., & Boyle, C. (2008). A metaanalytic review of components associated with parent training
271 program effectiveness. Journal of Abnormal Child Psychology, 36(4), 567–589. doi:10.1007/s10802-007-9201-9. Ostrovsky, A., & Barnett, M. (2014). Accelerating change: Fostering innovation in healthcare delivery at academic medical centers. Healthcare, 2(1), 9–13. doi:10.1016/j.hjdsi.2013.12.001. Reichow, B. (2012). Overview of meta-analyses on early intensive behavioral intervention for young children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(4), 512–520. doi:10.1007/s10803-011-1218-9. Sanders, M. R., & Mazzucchelli, T. G. (2013). The promotion of selfregulation through parenting interventions. Clinical Child and Family Psychology Review, 16(1), 1–17. doi:10.1007/s10567013-0129-z. Sanders, M. R., Prinz, R. J., & Shapiro, C. J. (2009). Predicting utilization of evidence-based parenting interventions with organizational, service-provider and client variables. Administration and Policy in Mental Health and Mental Health Services Research, 36(2), 133–143. doi:10.1007/s10488-009-0205-3. Shapiro, C. J., Prinz, R. J., & Sanders, M. R. (2014). Sustaining use of an evidence-based parenting intervention: Practitioner perspectives. Advance online publication. Journal of Child and Family Studies. doi:10.1007/s10826-014-9965-9. Spreckley, M., & Boyd, R. (2009). Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: A systematic review and meta-analysis. The Journal of Pediatrics, 154(3), 338–344. doi:10.1016/j.jpeds.2008.09.012. Steiner, A. M., Koegel, L. K., Koegel, R. L., & Ence, W. A. (2012). Issues and theoretical constructs regarding parent education for autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(6), 1218–1227. doi:10.1007/s10803-011-1194-0. Wood, S., Gangadharan, S., Tyrer, F., Gumber, R., Devapriam, J., Hiremath, A., et al. (2014). Successes and challenges in the implementation of care pathways in an intellectual disability service: Health professionals’ experiences. Journal of Policy and Practice in Intellectual Disabilities, 11(1), 1–7. doi:10.1111/ jppi.12063. Yamada, A., Kato, M., Suzuki, M., Suzuki, M., Watanabe, N., Akechi, T., et al. (2012). Quality of life of parents raising children with pervasive developmental disorders. BMC Psychiatry, 12(1), 119. doi:10.1186/1471-244X-12-119. Zand, D. H., Braddock, B., Baig, W., Deasy, J., & Maxim, R. (2013). Role of pediatricians in fostering resilience in parents of children with autism spectrum disorders. The Journal of Pediatrics, 163(6), 1769–1771. doi:10.1016/j.jpeds.2013.06.074.
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