Taking Care of Siblings Growing Up with Autism | Organization for Autism Research

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Harriet Redman, M.S. Ed., (right) is the executive director and founder of WisconSibs. Her daughter, Christiana, is her “inspiration and most honest critic.”

Harriet Redman, M.S. Ed., (right) is the executive director and founder of WisconSibs. Her daughter, Christiana, is her “inspiration and most honest critic.”

When you have a child with autism or other developmental disability, it’s easy to feel you don’t have a free moment. Between your child’s medical appointments, IEPs, household tasks, therapy, community activities, and work, your days are full. Not only that, but when you are witnessing worrisome or extreme behaviors or emotions in your child with an autism diagnosis, it is often hard to notice siblings. So it is understandable you may overlook, even dismiss, signs of concern showing in your children who don’t have an autism diagnosis, but are growing up with it.

As with all sibling relationships, there are positives and negatives to having a sibling with autism. Most siblings I talk with say that they wouldn’t be the person they are today if not for their sister or brother with disabilities. They are proud of their siblings and what they have accomplished. They acknowledge that their own traits like empathy and perseverance are the result of their relationship with their sibling. Indeed, there is much to celebrate as siblings reflect on their experiences as protector, teacher, even caregiver for their sibling.

Still, according to one large-scale study of parents in the United States, siblings of children with disabilities are three times more likely to feel sad, nervous, or afraid; have more difficulties at school; and a significantly higher rate of functional impairment than children with typically developing siblings. More than parents of children without disabilities, you may find that your typically developing siblings:

  • Have difficulty concentrating
  • Have poor relationships with teachers or school staff
  • Don’t complete or turn in homework
  • Avoid spending time with their peers
  • Have interpersonal relationship problems with family members, especially Mom.
How You Can Help
  1. Find a family-based health care provider who acknowledges the needs of siblings and can help you address their emotional and behavioral health too.
  2. Recognize and acknowledge your child’s role and feelings. Siblings experience many of the same stresses, fears, and frustrations as their parents. They show these emotions with angry words or behavior. When sad, they may get very quiet or uninterested in things that normally excite them. Let them know that it is okay to feel frustrated, sad, or angry. Let them know that you sometimes have negative feelings too, and help them think of things that can make you both feel better.
  3. Keep your child informed. When children don’t have real information, the stories they make up can be frightening. Do your best to explain autism in an age-appropriate way. There are many books, including OAR’s Autism, My Sibling, and Me booklet, that parents can read with their child.
  4. Protect your child and help them develop coping strategies. Young siblings tell us that they need to know that their parents will protect them from their sibling’s hurtful behaviors. Siblings can be the target of a bully on the playground or hurtful peer on social media. Be aware of when your child may need help with developing some strategies to counter these attacks.
  5. Help your child meet other sibs. Children can benefit from meeting other children who have siblings with autism or other developmental disabilities. You can:

Arrange play dates with other children who have siblings with disabilities.

Attend activities organized by your local autism group as a family.

Sign them up for sibling programs like Sibshops. Sibshops are fun, relaxed, action-packed events that give children the opportunity to learn they are not alone. They connect with other siblings sharing many of the same concerns but more importantly, some of the same joys of growing up with a sibling with disabilities. They make long-time friends. Adults who have participated in Sibshops as children state they felt better prepared for young adulthood.

6. Spend one-on-one time with each child as part of your family routine. Parents who manage to squeeze in some routine time with their typical children can help not only their typical children but also better meet the needs of their child with autism. Just like routines may help your child with autism function, making individual time with your typical children a family routine reassures them they are loved and can depend on you. Here are a few ideas to try:

Set aside 20 to 30 uninterrupted minutes a day to spend one-on-one with your typical child. Make it a time you can guarantee them you’ll be “all theirs,” maybe bedtime or first thing in the morning. Do something you enjoy together. Read to them, braid their hair, color or scrapbook, make a milkshake. This is not a time to do homework, housework, or post on Facebook.

Find respite to get away with your typical children in a stress-free environment. Whether it is a couple hours once a week or a week-long vacation, taking a “time-out” for yourself, your typical children, and your child with autism can help strengthen communication and refresh you to be able to better manage daily stress.

Keep in mind that the relationship between siblings changes constantly during life (or even during an afternoon). Sometimes they are close and loving. Sometimes just the opposite. A sibling plays many roles: friend, teacher, caregiver, protector, even antagonist. To help them enjoy the relationship now and in the future, acknowledge their needs and be sure each gets the reassurance that you love them, as well as their siblings.

Harriet Redman, M.S. Ed., (right) is the executive director and founder of WisconSibs. Her daughter, Christiana, is her “inspiration and most honest critic.”Harriet Redman, M.S. Ed. is executive director and founder of WisconSibs, a nonprofit organization dedicated to children and adults who have siblings with disabilities. She has a son with developmental disabilities whose sister is her mother’s inspiration and most honest critic. Redman has received the Exceptional Parent magazine’s Maxwell J. Schleifer Distinguished Service Award, the Kasidhe Olson Distinguished Parent Award, and the Richard Blakely Award from the WI Governor’s Committee for People with Disabilities. Harriet and her daughter, Christiana, write a blog about their experiences as mom and daughter called Say Hello, Yellow!.

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