It's not fair!
Talking to your children about a sibling with autism
“The impact of autism puts stressors on the entire family, including emotional worries, time constraints and financial worries,” says Dawn Heino, an occupational therapist at the Children’s Therapy unit (CTU) at MultiCare Good Samaritan Hospital. “This impacts the siblings tremendously.”
Children who have a sibling with autism may have a lot of negative feelings about the way their sibling’s autism affects their lives. It’s important for parents to recognize these feelings and be prepared to help their other children deal with them.
A child might say something like, “It’s not fair that she can do whatever she wants (hit me, have temper tantrums, ignore me and so on) and I can’t.”
“Most of the time, kids with autism have difficulty communicating and interacting with others, which often makes them seem aloof; withdrawn; and like they do not enjoy the people around them, including their siblings,” Heino says.
For this reason, it’s important to explain early and often why your child with autism behaves differently from his or her siblings, using age-appropriate language, says Betsie Walter, RN, an autism nurse navigator with MultiCare Mary Bridge Pediatric Neurosciences Center.
“For example,” she continues, “you could say, ‘Miranda doesn't know how to talk like you do.’”
Your child might say, “It’s not fair that we never get to do what I want to do.”
Because children with autism often have trouble dealing with changes in routine or being in places that are more crowded or noisy then they are used to, it can be difficult for families to plan outings or attend school functions.
“One of the biggest stressors is often the child with autism doesn't do well in public settings,” says Walter.
Families may also have less money to spend on things like after-school sports, summer camps or other activities that other children in the family may want to do because of the added costs of meeting the needs of the child with autism.
Solutions to this vary widely but may include allowing the other children to choose one or two activities a year they want to do, enlisting other adult family members to help carpool or attend events, or creating a family schedule so that parents can take turns being available for other children’s activities.
Or your child might say, “It’s not fair that you spend more time with her than with me.”
“Probably the biggest impact for siblings is that parents have to spend more time and energy managing and helping their child with autism and have less time for the siblings,” Heino says. “This can cause jealously, resentment and a feeling that the parents do not love them as much as their sibling.”
Walter adds: “It’s important to remember that each child in the family needs their own time to feel special, even if it’s only five minutes at bedtime.”
A special place for siblings
Sibshop is a program at MultiCare Good Samaritan's Children's Therapy Unit (CTU) for typically developing brothers and sisters ages 5 through 17 who have a sibling with a disability or chronic health condition, including autism.
“Sibshop is a great opportunity for siblings to spend time with other kids who understand what they are going through at home,” says Brandi Livengood, an occupational therapist at CTU. “Sibshop lets them know that they are not the only kid who has a brother or sister with a disability in their life. It gives them a safe place to vent or to ask for help. It also gives them a time when it is all about them."
Learn more about the Sibshop program, and the CTU.
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