Sibling Support—Autism Toolkit

Abstract

The content in this section is closely adapted, with permission, from the Organization for Autism Research Brothers, Sisters, and Autism resource guide for parents and caregivers. View the document in its entirety at https://researchautism.org/wp-content/uploads/2016/04/OAR_SiblingResource_Parents_2015.pdf.For a child or teen with autism, his longest lasting relationship will likely be with a neurotypical sibling or siblings. These lifelong friends, future advocates, and potential caretakers (depending on support needs and life circumstances) need guidance and support from parents. It starts with a positive framework for teaching siblings about how autism impacts their brother or sister, teaching healthy coping skills to address difficult situations or emotions, being aware of opportunities for mutual fulfillment, encouraging bonding, and making everyone feel special.Siblings might ask about autism if they’ve heard you use the term, but they’re more likely to ask about what their brother or sister is doing (ie, behaviors). There is no “perfect time” for these conversations, but starting early and revising your description for age appropriateness can be very helpful.All families experience and must manage challenges together. These challenges can be more pronounced when there is a child who has significant support needs, but it also creates opportunities for parents and caregivers to promote understanding and acceptance.Activities outside the home can be a source of stress for a child with autism, but also for siblings if a child’s autism results in behaviors that are misunderstood or misinterpreted by friends or strangers.Having a brother or sister with autism comes with many joys but also a host of feelings (confusion, resentment, etc) that can be difficult to process. Parents and caregivers can help by acknowledging these feelings, keeping lines of communication open, and suggesting healthy coping strategies.Siblings may feel distant from their sibling with autism or wish they had the same closeness they see between siblings from other families. Parents and caregivers play a critical role in building a foundation of love that exists even when there are communication or other barriers.Sibling Support Project (SSP) (www.siblingsupport.org) is a national program dedicated to the concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.Sibling Leadership Network (SLN) (https://siblingleadership.org) promotes a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the life span enabling them to be effective advocates with their brother and sister, and to serve as change agents for themselves and their families.Siblings with a Mission (www.siblingswithamission.org) provides siblings and family members an opportunity to share their stories, offer suggestions, and make friends with others who understand. They spread awareness and offer support through story columns, a resource database, monitored video conversations, Web chat forums, sibling workshops, and family conferences.Here are autism sibling support resources (https://researchautism.org/how-we-help/families/sibling-support) from the Organization for Autism Research.The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults with Disabilities (www.amazon.com/Sibling-Survival-Guide-Indispensable-Disabilities/dp/1606130137)The information contained in this resource should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances. Original resource included as part of Caring for Children With Autism Spectrum Disorder: A Practical Resource Toolkit for Clinicians, 3rd Edition.Inclusion in this resource does not imply an endorsement by the American Academy of Pediatrics (AAP). The AAP is not responsible for the content of the resources mentioned in this resource. Website addresses are as current as possible but may change at any time.The American Academy of Pediatrics (AAP) does not review or endorse any modifications made to this resource and in no event shall the AAP be liable for any such changes.