Having a sibling on the autism spectrum or with other differences changes your life forever. The extra attention the sibling with special needs requires and learning to navigate the circumstances that their differences create can be a lot on a kid, no matter their age or maturity level.
When children are young, it’s not uncommon for the neurotypical child to complain that their sibling is the one getting all the attention. To a great extent they are correct—parenting a child with special needs requires an unfathomable amount of time and resources.
Dr. Kate Fiske, founder and director of the North Star Family Autism Center, clinical associate professor at Rutgers University and director of Family Support Services at Douglass Developmental Disabilities Center, says the challenges kids face may change over time.
“When siblings are young, the biggest challenges may be based on feeling nervous about how friends will respond to their sister or brother,” Fiske says. “It can mean they can’t go out into the community, participate in activities or have friends over the way they’d like.”
Fiske says she often hears siblings talk about their special needs brother or sister getting more attention or special treatment. “But as adult siblings reflect back, we often hear that while their sibling got more attention, that they now understand why.”
FOCUS ON SMALL MOMENTS
Fiske says even small moments parents spend with their neurotypical children can make a lasting impact. And the good news is that they don’t need to be grand gestures to make a difference. Adult siblings she’s spoken with say they remember the little things, like going for ice cream or driving to sports practice with their parents. Fiske says even coming up with a special word that signals the sibling needs some alone time with you can be effective.
As kids get older, worries tend to center more around the social aspects of their lives and how that may be disrupted. For adult siblings, concerns are usually centered around how to incorporate their sister or brother into their lives. Questions such as if they will need to provide care or become a guardian or what role they’ll take on come into focus.
Even when the sibling is more independent, they still may feel the need to check in with them to a greater extent than with a neurotypical sibling. The way parents handle these issues makes a huge difference in the lives of all their kids.
“Communication is so key early on,” says Fiske. “Talk in an age-appropriate way about what autism means in your family.”
Parents can have conversations with their kids about problem solving how they’re going to approach things with peers. That could mean making sure they feel comfortable talking about what autism is. As kids get older, it’s also important to talk about what the future could look like.
SEEK OUT SUPPORT
“There are some nice resources through Organization for Autism Research and books specific for different ages and workbooks that can help,” says Fiske. “Older siblings can find groups through social media and connect with siblings in the same boat. The great thing is that it’s not constrained by geographical location.”
For the past 20 years, Fiske has run a social support group out of Rutgers designed for siblings of kids on the spectrum. During the pandemic, the group moved to remote meetings, with about 30 siblings participating.
“It’s rare for kids to be in a room with children who have a similar experience,” she says. “We focus on problem solving, coping skills and learning about autism in general. That can be really beneficial.”
UNDERSTAND ROLES MAY BE REVERSED
“In most families you expect older siblings to help younger ones, but in autism you see that pattern where they help longer—or that younger siblings are helping older ones which is very unexpected,” says Fiske.
Parents should be aware of what expectations are being put on a sister or brother—make sure you’re having conversations about their role in the family. Cultural expectations can also impact the role a sibling plays in the life of their sister or brother.
“Some siblings may have a difficult time coping with some of the emotions related to having a brother or sister on the spectrum,” says Fiske. “Intense feelings of worry, anger or sadness may emerge at any point in childhood and it may benefit the family to reach out to a professional, like a psychologist, who can provide additional support.”
One of the biggest things siblings take away from their unique situations is the compassion they have for other people, says Fiske. They tend to have more empathy for those with visible or invisible challenges, she says.
Some adults say their experiences with a special needs sibling led them to their career path, such as becoming a teacher or a behavior analyst. “It’s not surprising since so many take on the role of helper in their families,” says Fiske.