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Supporting the Families of High-Risk Infants Who Have an Older Sibling with ASD: Collaboration, Consultation, and Care

  • Jessica BrianEmail author
  • Susan E. Bryson
  • Lonnie Zwaigenbaum
  • Susan Cosgrove
  • Wendy Roberts
Chapter
Part of the Autism and Child Psychopathology Series book series (ACPS)

Abstract

This chapter explores the unique experiences of families parenting an infant or toddler with emerging developmental concerns, while also parenting an older child with autism spectrum disorder (ASD). We consider this within the context of the literature regarding parenting a child with ASD and the current state of knowledge about sibling recurrence risk and early signs of emerging ASD in infants and toddlers. The majority of this chapter is written from the perspective of a clinical research team with many years of experience garnered through a longitudinal ‘infant sibling study’. From this perspective, informed by ongoing conversations with families, we reflect on the processes by which parents navigate through the push and pull of closely observing their young child for the emergence of developmental differences, and we describe a collaborative model of monitoring and discussing concerns with families, the importance of appreciating families’ perspectives, and the joint process by which families may be best supported. We provide a brief overview of practical supports such as early intervention, advocacy, and family navigation and highlight the importance of helping caregivers find time and resources to take care of their own personal needs. This chapter concludes with a first-person account of this unique period in one family’s life.

Keywords

Infant Sibling Autism Toddler Parent Caregiver Family Early intervention Advocacy Navigation 

Notes

Acknowledgements

Our group has been conducting baby sibling research since 1999, with funding support from Autism Speaks, Autism Speaks Canada, Canadian Institutes of Health Research, NeuroDevNet, SickKids Foundation, Simons Foundation, the Sinneave Family Foundation, the Craig Foundation, the Joan and Jack Craig Chair in Autism Research (SB, IMS), and the Stollery Children’s Hospital Foundation Chair in Autism Research (LZ). We are tremendously grateful for our highly committed research staff and trainees who have supported us in supporting the families in our research. Finally, we wish to thank all the dedicated families who have shared their children, their time, and their stories with us over many years – this work would not be possible without them.

References

  1. Baranek, G. T. (1999). Autism during infancy: A retrospective video analysis of sensory-motor and social behaviors at 9-12 months of age. Journal of Autism and Developmental Disorders, 29, 213–224.CrossRefGoogle Scholar
  2. Baranek, G. T., Watson, L. R., Turner-Brown, L., Field, S. H., Crais, E. R., Wakeford, L., et al. (2015). Preliminary efficacy of adapted responsive teaching for infants at risk of autism spectrum disorder in a community sample. Autism Research and Treatment, 2015, 386951.CrossRefGoogle Scholar
  3. Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51(9), 702–714.CrossRefGoogle Scholar
  4. Brian, J., Bryson, S. E., Smith, I. M., Roberts, W., Roncadin, C., Szatmari, P., et al. (2015). Stability and change in autism spectrum disorder diagnosis from age 3 to middle childhood in a high-risk sibling cohort. Autism: Journal of Research and Practice. E-pub ahead of print. Dec 18. https://doi.org/10.1177/1362361315614979.
  5. Brian, J., Smith, I. M., Roberts, W., Zwaigenbaum, L., & Bryson, S. (2016). The social ABCs caregiver-mediated intervention for toddlers with autism spectrum disorder: Feasibility, acceptability, and evidence of promise from a multi-site study. Autism Research, 9(8), 899–912.CrossRefGoogle Scholar
  6. Brian, J. A., Smith, I. M., Zwaigenbaum, L., & Bryson, S. E. (2017). Cross-site randomized control trial of the Social ABCs caregiver-mediated intervention for toddlers with autism spectrum disorder. Autism Research, 10(10): 1700–1711. https://doi.org/10.1002/aur.1818.
  7. Bryson, S. E., & Zwaigenbaum, L. (2014). Autism observation scale for infants. In Comprehensive guide to autism (pp. 299–310). New York, NY: Springer.CrossRefGoogle Scholar
  8. Bryson, S. E., Zwaigenbaum, L., Brian, J., Roberts, W., Szatmari, P., Rombough, V., .et al. (2007). A prospective case series of high-risk infants who developed autism. Journal of Autism and Developmental Disorders, 37(1), 12–24.CrossRefGoogle Scholar
  9. Charman, T., Young, G. S., Brian, J., Carter, A., Carver, L. J., Chawarska, K., et al. (2016). Non-ASD outcomes at 36 months in siblings at familial risk for autism spectrum disorder (ASD): A baby siblings research consortium (BSRC) study. Autism Research. https://doi.org/10.1002/aur.1669
  10. Chawarska, K., Shic, F., Macari, S., Campbell, D. J., Brian, J., Landa, R., et al. (2014). 18-month predictors of later outcomes in younger siblings of children with autism spectrum disorder: A baby siblings research consortium study. Journal of the American Academy of Child & Adolescent Psychiatry, 53(12), 1317–1327.CrossRefGoogle Scholar
  11. Constantino, J. N., Zhang, Y., Frazier, T., Abbacchi, A. M., & Law, P. (2010). Sibling recurrence and the genetic epidemiology of autism. American Journal of Psychiatry, 167(11), 1349–1356.CrossRefGoogle Scholar
  12. Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, 18(5), 583–597.CrossRefGoogle Scholar
  13. Degrace, B. W. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58(5), 543–550.CrossRefGoogle Scholar
  14. Drumm, E., Bryson, S., Zwaigenbaum, L., & Brian, J. (2015). Language-related abilities in ‘unaffected’ school-aged siblings of children with ASD. Research in Autism Spectrum Disorders, 18, 83–96.CrossRefGoogle Scholar
  15. Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37(1), 39–52.CrossRefGoogle Scholar
  16. 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.CrossRefGoogle Scholar
  17. Fenwick, M. E., Bryson, S. E., Dowds, E., Lynch, K., Hodgson, S., McCormick, T., et al. (2014, May). Exploring the lived experience of families in the social ABCs parent-mediated intervention for Toddlers with autism spectrum disorder. Poster presentation at the International Meeting for Autism Research (IMFAR). Atlanta, USA.Google Scholar
  18. Freuler, A. C., Baranek, G. T., Tashjian, C., Watson, L. R., Crais, E. R., & Turner-Brown, L. M. (2014). Parent reflections of experiences of participating in a randomized controlled trial of a behavioral intervention for infants at risk of autism spectrum disorders. Autism, 18(5), 519–528.CrossRefGoogle Scholar
  19. Garon, N., Bryson, S. E., Zwaigenbaum, L., Smith, I. M., Brian, J., Roberts, W., et al. (2009). Temperament and its relationship to autistic symptoms in a high-risk infant sib cohort. Journal of Abnormormal Child Psychology, 37(1), 59–78.CrossRefGoogle Scholar
  20. Georgiades, S., Szatmari, P., Zwaigenbaum, L., Bryson, S., Brian, J., Roberts, W., et al. (2013). A prospective study of autistic-like traits in unaffected siblings of probands with autism spectrum disorder. JAMA Psychiatry, 70(1), 42–48.CrossRefGoogle Scholar
  21. Green, J., Charman, T., Pickles, A., Wan, M. W., Elsabbagh, M., Slonims, V., et al. (2015). Parent-mediated intervention versus no intervention for infants at high risk of autism: A parallel, single-blind, randomised trial. Lancet Psychiatry, 2(2), 133–140.CrossRefGoogle Scholar
  22. Grønborg, T. K., Schendel, D. E., & Parner, E. T. (2013). Recurrence of autism spectrum disorders in full- and half-siblings and trends over time: A population-based cohort study. JAMA Pediatrics, 167(10), 947–953.CrossRefGoogle Scholar
  23. 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(3), 629–642.CrossRefGoogle Scholar
  24. Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20(3), 180–189.CrossRefGoogle Scholar
  25. Jones, E. J., Gliga, T., Bedford, R., Charman, T., & Johnson, M. H. (2014). Developmental pathways to autism: A review of prospective studies of infants at risk. Neuroscience & Biobehavioural Reviews, 39, 1–33.CrossRefGoogle Scholar
  26. Kasari, C., Siller, M., Huynh, L. N., Shih, W., Swanson, M., Hellemann, G. S. et al. (2014). Randomized controlled trial of parental responsiveness intervention for toddlers at high risk for autism. Infant Behavior and Development, 37(4), 711–721.Google Scholar
  27. King, G. A., Zwaigenbaum, L., King, S., Baxter, D., Rosenbaum, P., & Bates, A. (2006). A qualitative investigation of changes in the belief systems of families of children with autism or down syndrome. Child: Care, Health and Development, 32(3), 353–369.Google Scholar
  28. Koegel, L., Singh, A., Koegel, R., Hollingsworth, J., & Bradshaw, J. (2014). Assessing and improving early social engagement in infants. Journal of Positive Behavior Interventions, 16(2), 69–80.CrossRefGoogle Scholar
  29. Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & Van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics, 122(6), e1149–e1158.CrossRefGoogle Scholar
  30. Messinger, D., Young, G. S., Ozonoff, S., Dobkins, K., Carter, A., Zwaigenbaum, L., et al. (2013). Beyond autism: A baby siblings research consortium study of high-risk children at three years of age. Journal of the American Academy of Child & Adolescent Psychiatry, 52(3), 300–308.CrossRefGoogle Scholar
  31. 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.CrossRefGoogle Scholar
  32. Nicholas, D. B., Zwaigenbaum, L., Roberts, W., Mckeever, P. (2013, June). Examining the experience of mothers of children with autism. Canadian Pediatric Society 90th Annual Conference. Edmonton, AB, Canada.Google Scholar
  33. Orsmond, G. I., Lin, L. Y., & Seltzer, M. M. (2007). Mothers of adolescents and adults with autism: Parenting multiple children with disabilities. Intellectual and Developmental Disabilities, 45(4), 257–270.CrossRefGoogle Scholar
  34. 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.CrossRefGoogle Scholar
  35. Osterling, J., & Dawson, G. (1994). Early recognition of children with autism: A study of first birthday home videotapes. Journal of Autism and Developmental Disorders, 24(3), 247–257.CrossRefGoogle Scholar
  36. Ozonoff, S., Young, G. S., Carter, A., Messinger, D., Yirmiya, N., Zwaigenbaum, L., … Stone, W. L. (2011). Recurrence risk for autism spectrum disorders: A baby siblings research consortium study. Pediatrics, 128(3), e488–e495.PubMedPubMedCentralGoogle Scholar
  37. Ozonoff, S., Young, G. S., Landa, R. J., Brian, J., Bryson, S., Charman, T., et al. (2015). Diagnostic stability in young children at risk for autism spectrum disorder: A baby siblings research consortium study. Journal of Child Psychology and Psychiatry, 56(9), 988–998.CrossRefGoogle Scholar
  38. Penner, M., Rayar, M., Bashir, N., Roberts, W., Hancock-Howard, R. L., Coyte, P. C. (2015). Cost-effectiveness analysis comparing pre-diagnosis ASD-targeted intervention with Ontario’s autism intervention program. Journal of Autism and Developmental Disorders. E-pub ahead of print: https://doi.org/10.1007/s10803-015-2447-0.
  39. Piven, J., & Palmer, P. (1999). Psychiatric disorder and the broad autism phenotype: Evidence from a family study of multiple-incidence autism families. American Journal of Psychiatry, 156(4), 557–563.PubMedGoogle Scholar
  40. Rogers, S. J., Dawson, G., & Vismara, L. A. (2012). An early start for your child with autism: Using everyday activities to help kids connect, communicate, and learn. New York, NY: Guilford Press.Google Scholar
  41. Rogers, S. J., Estes, A., Lord, C., Vismara, L., Winter, J., Fitzpatrick, A., et al. (2012). Effects of a brief early start Denver model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: A randomized controlled trial. Journal of the American Academy of Child & Adolescent Psychiatry, 51(10), 1052–1065.CrossRefGoogle Scholar
  42. Rogers, S. J., Vismara, L., Wagner, A. L., Mccormick, C., Young, G., & Ozonoff, S. (2014). Autism treatment in the first year of life: A pilot study of infant start, a parent-implemented intervention for symptomatic infants. Journal of Autism and Developmental Disorders, 44(12), 2981–2995.CrossRefGoogle Scholar
  43. Sacrey, L. A., Bryson, S., Zwaigenbaum, L., Brian, J., Smith, I. M., Roberts, W., et al. (2016). The autism parent screen for infants: Predicting risk of autism spectrum disorder based on parent-reported behavior observed at 6–24 months of age. Autism. https://doi.org/10.1177/1362361316675120
  44. Sacrey, L. A., Zwaigenbaum, L., Bryson, S., Brian, J., Smith, I. M., Roberts, W., et al. (2015). Can parents’ concerns predict autism spectrum disorder? A prospective study of high-risk siblings from 6 to 36 months of age. Journal of the American Academy of Child & Adolescent Psychiatry, 54(6), 470–478.CrossRefGoogle Scholar
  45. Schertz, H. H., Baker, C., Hurwitz, S., & Benner, L. (2011). Principles of early intervention reflected in toddler research in autism spectrum disorders. Topics in Early Childhood Special Education, 31(1), 4–21.CrossRefGoogle Scholar
  46. Schertz, H. H., Odom, S. L., Baggett, K. M., & Sideris, J. H. (2013). Effects of joint attention mediated learning for toddlers with autism spectrum disorders: An initial randomized controlled study. Early Childhood Research Quarterly, 28, 249–258. https://doi.org/10.1016/j.ecresq.2012.06.006CrossRefGoogle Scholar
  47. Schreibman, L., Dawson, G., Stahmer, A. C., Landa, R., Rogers, S. J., Mcgee, G. G., et al. (2015). Naturalistic developmental Behavioral interventions: Empirically validated treatments for autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(8), 2411–2428.CrossRefGoogle Scholar
  48. Siller, M., Hutman, T., & Sigman, M. (2013). A parent-mediated intervention to increase responsive parental behaviors and child communication in children with ASD: A randomized clinical trial. Journal of Autism and Developmental Disorders, 43(3), 540–555.CrossRefGoogle Scholar
  49. Szatmari, P., Maclean, J. E., Jones, M. B., Bryson, S. E., Zwaigenbaum, L., Bartolucci, G., et al. (2000). The familial aggregation of the lesser variant in biological and nonbiological relatives of PDD probands: A family history study. Journal of Child Psychology and Psychiatry, 41(5), 579–586.CrossRefGoogle Scholar
  50. Wetherby, A. M., Guthrie, W., Woods, J., Schatschneider, C., Holland, R.D., Morgan, L. et al. (2014). Parentimplemented social intervention for toddlers with autism: an RCT. Pediatrics, 134, 1084–1093. https://doi.org/10.1542/peds.2014-0757
  51. Zwaigenbaum, L., Bryson, S., Rogers, T., Roberts, W., Brian, J., & Szatmari, P. (2005). Behavioral manifestations of autism in the first year of life. International Journal of Developmental Neuroscience, 23(2–3), 143–152.CrossRefGoogle Scholar
  52. Zwaigenbaum, L., Bryson, S. E., Brian, J., Smith, I. M., Roberts, W., Szatmari, P., et al. (2015). Stability of diagnostic assessment for autism spectrum disorder between 18 and 36 months in a high-risk cohort. Autism Research, 9(7), 790–800.CrossRefGoogle Scholar
  53. Zwaigenbaum, L., Bryson, S. E., Szatmari, P., Brian, J., Smith, I. M., Roberts, W., et al. (2012). Sex differences in children with autism spectrum disorder identified within a high-risk infant cohort. Journal of Autism and Developmental Disorders, 42(12), 2585–2596.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Jessica Brian
    • 1
    • 2
    Email author
  • Susan E. Bryson
    • 3
  • Lonnie Zwaigenbaum
    • 4
  • Susan Cosgrove
    • 5
  • Wendy Roberts
    • 2
    • 6
  1. 1.Autism Research Centre, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation HospitalTorontoCanada
  2. 2.Department of PaediatricsUniversity of TorontoTorontoCanada
  3. 3.Departments of Pediatrics and Psychology & NeuroscienceDalhousie University and the IWK Health CentreHalifaxCanada
  4. 4.Department of PediatricsUniversity of Alberta, and Glenrose Rehabilitation HospitalEdmontonCanada
  5. 5.Family Leader, Family Leadership Program, Holland Bloorview Kids Rehabilitation Hospital, & Member of the Research Family Engagement Committee; Bloorview Research InstituteEast YorkCanada
  6. 6.Integrated Services for Autism and Neurodevelopmental DisordersTorontoCanada

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