Like parents of individuals with Autism Spectrum Disorders (ASD), siblings experience unique concerns and opportunities. The sibling relationship can easily exceed six decades, and siblings face these issues for even longer than parents. Historically, siblings have had few opportunities to receive information and support. Parents have access to professionals and each other. Siblings are often overshadowed at home and overlooked by service providers. Recognizing some common sibling concerns and engaging a few simple strategies can support the well-being of siblings and the entire family.
Emily Holl, MFA, LMSW
Information Needs
Siblings, like parents, need information about the disability (Meyer & Vadasy, 2008, p. 37). Very young siblings need to know they didn’t cause and can’t catch ASD. School age kids need language to explain their sibling’s ASD to themselves and to others. Having a name for the thing that makes your brother or sister “different” can be very helpful.
Teen siblings worry about the future care of their brothers and sisters, and what role they will play. Adolescents need to know that future plans are being made and should be part of planning conversations. Adult siblings often support their brothers and sisters later in life, an overwhelming situation for many. Adult sibs need help navigating the service system and opportunities to connect with other siblings to share information and support.
“Question for sibs of those with severe autism,” one sibling recently wrote on SibNet, our online group for adult siblings of people with disabilities. “What sort of living situation have you found for them and is it working? My parents are struggling more than my heart can take! Being a new mom, newly single, and the only other sib, I’m feeling helpless and beyond overwhelmed” (SibNet, 2020).
Ongoing communication in age-appropriate language enables siblings to understand, come to terms with, and support their sib’s autism. Conversations with parents and professionals are key. We encourage parents to check in frequently with kids regarding their understanding of their sib’s autism and services. We urge professionals to set aside time to address siblings’ questions and concerns.
Isolation/Loss
Siblings experience isolation from family members, peers and the greater community (Meyer & Vadasy, 2008, p. 20). Sibs may feel the loss of a “normal” sibling relationship, and isolation from parents, whose attention is largely focused on their ASD sibling. Many struggle silently with mental health and safety concerns.
“My brother has autism and gets extremely violent,” shared a sister in our SibTeen group for adolescents. “I’ve been having so much anxiety since school is coming up. Since the routine is about to change, meltdowns are about to happen. I’ve had nightmares about him and everything. I wish I had a way to bond with him but I’m anxious whenever I try to. I’m not sure what to do” (SibTeen, 2016).
Providing siblings with opportunities to connect with each other is an important way to help them understand they are not alone. “I have a younger sister who has autism. She is very low functioning, non-verbal and lives in a group home,” shared a sister on SibNet. “For my entire life I’ve longed to connect with others in a similar situation. This feels like a start. I’m in tears looking through some of the posts. You guys get it” (SibNet, 2020).
Resentment
When family life seems to revolve around one person, resentment is a natural response. Often, a family’s financial, social, and emotional resources are heavily invested in the child with autism. Siblings often resent receiving less parental time and attention, and how a disability can limit family outings, vacations, and activities (Meyer & Vadasy, 2008, p. 25).
Siblings can resent unequal expectations for behavior and chores, and often have a clear sense of which behaviors and limitations can be attributed to the diagnosis. “My older brother has autism, and I have noticed that my parents treat him differently than they treat me, in a way that is unfair to me (i.e. discipline, helping us with our problems),” shared one SibTeen member. “Is it ok to think this is unfair, and should I ask my parents about it, or is this something I should try to just deal with” (Sibteen, 2017)?
Parents can support siblings by setting equal expectations to the greatest extent possible for all their children. Sharing an interest or activity – camping, sports, music, religion – can unify the family around something other than autism. Validating siblings’ feelings and acknowledging unfair circumstances helps siblings feel seen, heard, and supported. For busy parents, carving out even small windows of time with a sibling can go a long way. It can also be helpful to have a trusted adult relative or friend who a sibling can call upon for support.
Guilt
Siblings experience guilt for many reasons (Meyer & Vadasy, 2008, p. 13). Young siblings may feel guilty if they believe they somehow caused or failed to “fix” their sib’s autism. Survivor’s guilt is common. Siblings experience guilt over natural, even healthy conflicts with their brothers and sisters with ASD. Reaching developmental milestones can also pose challenges, particularly for younger sibs who surpass their older brothers and sisters.
“It’s hard when you can do something like go to the mall by yourself with friends or get your driver’s license and because your sib has a disability he/she can’t,” shared one teen sibling (Meyer, 2005, p.100).
Siblings also feel guilty about something that many of us promote as a basic human right: self-determination. College students worry about returning home to help out. Adults feel guilty about pursuing their own careers, families, and happiness.
Providing siblings with accurate information and opportunities to talk about and validate their feelings can help manage guilt. What is worse than feeling guilty? Feeling guilty AND wrong for it.
Future Concerns
Siblings of all ages worry about the futures of their brothers, sisters, and selves. Will they find a life partner who will accept a future caregiving role? What about children?
“One of the many things I’m struggling with is the idea of starting a family,” shared one SibNet member. “After growing up with my brother, I panic at the idea of having and raising a child with autism, while eventually caring for my adult brother. I feel such a horrible combination of sadness, anger, fear, anxiety, and heartbreak, and guilt about having these feelings at all” (SibNet, 2020).
Planning for the future of the person with ASD is an ongoing process that should begin early, be revisited often, and provide all family members with opportunities to discuss options and ideas. Families may not have all the answers, but talking together can provide great relief.
Silver Linings
Siblings play important roles in their families and experience many strengths and opportunities. Investing time, energy, and resources in siblings can benefit the entire family. We are grateful to all who acknowledge, validate and support siblings, the family members who will have the longest lasting relationships with people with ASD.
Emily Holl, MFA, LMSW, is Director of the Sibling Support Project, a program of Kindering, Washington’s largest and most comprehensive neurodevelopmental center. Reach us at www.siblingsupport.org, emilyholl@siblingsupport.org or 425-362-6421.
References
Meyer, D.J., and Vadasy, P. F. (Ed.). (2008). Sibshops: workshops for siblings of children with special needs. Baltimore, MD: Paul H. Brookes Publishing Co.
Meyer, D.J., (Ed.). (2005). The sibling slam book. Bethesda, MD: Woodbine House.
SibNet (n.d.). Home [Facebook page]. Facebook. Retrieved August 28, 2020 from https://www.facebook.com/groups/SibNet
SibTeen (n.d.). Home [Facebook page]. Facebook. Retrieved August 28, 2020 from https://www.facebook.com/groups/SibTeen
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