News and Notes from The Johnson Center

The Sibling Experience: Facing Challenges

JCCHD | Tue, May 29, 2012 | [Community][Sibling Spotlight][Webinars]


Growing up with a brother or sister with autism is a unique experience to say the least. As parents, it’s important to understand the experiences of siblings so you can help them navigate the challenges they might face.

One of the first things siblings need to know is the answer to the question: “What does autism mean?” It’s important to check in with younger children and debunk any misunderstandings they might have, such as whether autism might be contagious, or whether they could have somehow been responsible for causing it, When children get older, they often wonder whether their brother or sister will have autism forever, and what their brother’s or sister’s future might be like. 

Changes in family life are common for families affected by autism. Oftentimes significant attention is focused on the child with ASD. Siblings are brought along to multiple appointments spend a lot of time in waiting rooms, likely wishing they could participate or be doing something else.  Therapists coming in and out of their home can make siblings feel like their space is being invaded.  The house can be loud and sometimes scary, depending on their brother’s or sister’s behavior. Siblings notice that their family doesn’t get to do many of the things other families do, such as go to theme parks or eat certain foods.  They pick up on their parents’ stress, and might worry that they’re responsible.

Siblings often experience difficult emotions, including guilt, anger, resentment, loneliness, envy, embarrassment, and anxiety.  Siblings likely feel as though they get less attention, or as though they’re the only one who has ever had to live with a sibling with ASD. Embarrassment around their peers is likely, and some are at risk of being bullied. Siblings sometimes express these feelings openly, but many bottle them up inside because they don’t want to put further stress on their parents, or they’re ashamed.

At the same time, it’s important to remember that having a brother or sister with autism is not all bad. As one sibling wrote, “My brother is still a loving, goofy, intelligent, stubborn teenager despite having autism, and I love him all the more for it” (Johnson & Rensselaer, 2010).

Stay tuned for our two-part webinar series on Meeting the Needs of Siblings to gain further information on the sibling experience and what parents should know. Part 1, presented on June 5th, will review common challenges siblings face. Helpful topics such as family communication, peer issues, and other important areas will be discussed. Part 2, on June 12th, will cover specific examples and tools you can use as a parent to support siblings.