Supporting the Families of High-Risk Infants Who Have an Older Sibling with ASD: Collaboration, Consultation, and Care
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.
KeywordsInfant Sibling Autism Toddler Parent Caregiver Family Early intervention Advocacy Navigation
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.
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