Sibling Support: Autism Toolkit | Advocare Mid Jersey Pediatrics (2023)

Sibling Support: Autism Toolkit | Advocare Mid Jersey Pediatrics (1)Sibling Support: Autism Toolkit | Advocare Mid Jersey Pediatrics (2)


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Guide for parents and caregivers

Content in this section has been closely adapted, with permission, from the Organization for Autism Research.Brothers, Sisters and Autismresource guide for parents and caregivers. Access the full document athttps://researchautism.org/wp-content/uploads/2016/04/OAR_SiblingResource_Parents_2015.pdf.

General description

For a child or adolescent with autism, their most enduring relationship is likely to be with a neurotypical sibling or siblings. These lifelong friends, future advocates, and potential caregivers (depending on support needs and life circumstances) need parental guidance and support. It starts with a positive framework for teaching siblings about how autism affects their brother or sister, teaching healthy coping skills for dealing with difficult situations or emotions, being aware of opportunities for mutual achievement, fostering bonding, and bringing everyone together.

explaining autism

Siblings might ask about autism if they've heard you use the term, but they're more likely to ask what your brother or sister is doing (i.e. behaviors). There is no "perfect time" for these conversations, but it can be very helpful to start early and revise your description so that it is age-appropriate.

  • Siblings want to know what's going on in their brother's or sister's world, so try to offer whatever insight you can into motivation or purpose. For example, if your child with autism rocks back and forth, waves his hands, or repeats noises, explain that he might do this to calm down or feel safe when lots of things (lights, sounds, etc.) are happening around him. around you. 🇧🇷

  • Younger children are likely to do better with skill-based definitions accompanied by concrete examples. For example: "Your brother learns a little differently than you and I do, so he needs extra help." Incorporating the termautismin your explanation, you can help older children better understand what this specifically means for their brother or sister.

Family life

All families experience and must deal with challenges together. These challenges may be more pronounced when there is a child with significant support needs, but it also creates opportunities for parents and caregivers to promote understanding and acceptance.

  • Recognize that the perceived injustice can feel enormous to siblings when your brother or sister with autism has special teachers or toys, or perhaps even fewer chores or different assignments.

  • Show siblings that even though your brother or sister with autism may demand more of your active attention, that doesn't mean they will get more of your love. Whenever possible, try to carve out alone time, and remember that even small tokens of appreciation and affection go a long way.

  • Watch and listen to how your neurotypical children react to their brother or sister with autism. Keep your expectations flexible, acknowledge and validate feelings, and remember that factors like gender and age difference affect all sibling relationships.

in public

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 misunderstood by friends or strangers.

  • Neurotypical siblings may feel guilty or conflicted about being embarrassed by something their brother or sister does that stems from autism. This can help equip them with the information and confidence to explain their sibling's autism (without getting defensive), if they feel comfortable doing so, or encourage them to ignore the reactions of others.

  • Special occasions, vacations, or going out can be difficult for a child with autism who has sensory sensitivity, problems socially connecting with others, or rigid routines. If this means that any of these experiences involve fewer family members or tend to be cut short, it can make neurotypical siblings like them less and even lead to resentment toward the brother or sister with autism. Try to take your priorities and preferences into account when planning.

  • School can be a stressful time for siblings if they feel judged for having a sibling who does "weird" things or requires special attention, so help them find simple, effective ways to have thoughtful conversations with their peers. For play at home, set clear boundaries and encourage your neurotypical children to be open with their friends about anything related to their sibling's autism that they should expect.

Challenges and Feelings

Having a brother or sister with autism brings a lot of joy, but also a lot of feelings (confusion, resentment, etc.) that can be difficult to process. Parents and caregivers can help by acknowledging these feelings, keeping the lines of communication open, and suggesting healthy coping strategies.

  • Sometimes it can help to reveal your own emotional struggles in a way that your neurotypical children can appreciate, and to remind siblings that all siblings have times when they don't get along, fight, or can't get along.

  • If your child with autism has aggressive behaviors, which can be a touchy subject to address, it is important that siblings feel that they are supported and that their safety is a priority.

  • If your child with autism has significant support needs, make sure that siblings are partners in planning for the future, regardless of what you expect or expect their role to be.

sibling relations

Siblings may feel distant from their siblings 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.

  • Find ways for younger siblings to play together, and encourage older siblings to find common interests, looking for overlaps even when they aren't obvious. For example, a budding scientist and a sports fan can do fun experiments (like bouncing a ball to learn about energy transfer) together.

  • In addition to getting involved in a club or their own activities to pause and recharge, siblings may find it helpful to connect in person or online (using a secure platform with appropriate supervision) with others who have a brother or sister with autism.

Organizations and Support Groups for Siblings

Brother 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, development and mental health issues.

  • SSP is best known for helping local communities start Sibshops (www.siblingsupport.org/about-sibshops🇧🇷 These are curriculum-based groups that give brothers and sisters of children with disabilities the opportunity to connect with other siblings, share stories and feelings, and have fun together. There are hundreds of registered Sibshops with trained facilitators in locations across the country.

Sibling Leadership Network (SLN) (https://siblingleadership.org) promotes a broad network of siblings who share the disability experience and people concerned about sibling issues, connecting them with lifelong social, emotional, governmental and interim support, enabling them to be effective advocates for their brothers and sisters and serve as agents of change for themselves and their families.

  • SLN has member chapters in more than half the states across the country, with opportunities for brothers to commit and/or resources to start their own chapter in a state that does not. They also host an annual 2 day conference with rotating venues.

Brothers with a Mission (www.hermanosconunamision.org) gives siblings and family members the opportunity to share their stories, offer suggestions, and make friends with others who understand. They share and support through story columns, a resource database, monitored video chats, web chat forums, sibling workshops, and family conferences.

  • This organization hosts virtual support groups for brothers and sisters of people with different disability diagnoses, including autism, as well as those who are grieving the loss of a sibling.

Select Sibling Support Features

Here are support resources for siblings with autism (https://researchautism.org/how-we-help/families/sibling-support) from the Organization for Autism Research.

  • Brothers, Sisters and Autism: A Guide for Sibling Supportive Parentsis a reference tool that addresses opportunities and challenges, offering practical strategies.

  • Life as an Autistic Sibling: A Guide for Teensuses a question-and-answer format to provide tips and advice on how to handle challenging situations productively, with testimonials from real teens.

  • Autism, My Brother and Meis a colorful workbook that helps elementary school kids learn what autism means to their brother or sister, answer questions, and come up with fun ideas for activities to do together.

The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults with Disabilities (www.amazon.com/Sibling-Survival-Guide-Indispensable-Disabilities/dp/1606130137)

  • This book is edited by experts in the field of disability and sibling relationships and focuses on the main concerns identified in a survey of hundreds of siblings; offers a sense that you're not alone, advice on how to talk to parents about plans for your sibling, and a crash course in guardianship, medical and legal issues, and government benefits for caring for children.

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 feature included as part ofCaring for Children with Autism Spectrum Disorder: A Practical Toolset for Clinicians, 3rd Edition.

Inclusion in this resource does not imply endorsement by the American Academy of Pediatrics (AAP). The AAP is not responsible for the content of resources referenced 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 changes to this feature, and in no event will the AAP be responsible for any such changes.

© 2020 American Academy of Pediatrics. All rights reserved.

The AAP broadcast took place on 10/14/2022 at 9:13:14. m.Item information last modified on 01/24/2022 06:59:10.

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