An Autism Diagnosis Can Be Challenging For Siblings
Date: July 8, 2016
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An autism spectrum disorder diagnosis affects one in 68 children, equaling millions of children a year. And, a large majority of those diagnosed have brothers and sisters who struggle to not only understand the diagnosis but also how to properly support their sibling with special needs.
It is not uncommon for typically developing siblings to experience varying emotions as they navigate through childhood while juggling the challenges of having a sibling with an autism diagnosis. Some common concerns for siblings include feeling embarrassed or frustrated by their brother or sister, feeling guilty about being the healthy one, feeling isolated and alone – “no one understands how this impacts me,” feeling pressured to act as a secondary caregiver and to overachieve in school.
What can parents/caregivers do to help?
Here are a few suggestions on how you can provide the appropriate support and guidance to help siblings develop healthy coping strategies.
Ensure your child understands the meaning of an autism diagnosis. For younger siblings you might consider using phrases like, “Your brother/sister learns differently than you,” or “Your brother or sister is still learning how to talk and play with friends.” For older children you can engage in more in-depth discussions and help them understand autism is a disorder of the brain and explain how it affects behavior.
Set realistic expectations for your typically developing child and talk about those expectations. Those expectations might include his/her role in caring for their sibling with autism, how they perform in school, etc.
Encourage open communication and acknowledge your child’s concerns.
Set aside one-on-one time with your child and provide individual attention.
Encourage your child to participate in after school activities, sports, clubs, etc.
Create opportunities for siblings to engage in meaningful activities together – teach your typically developing child how to be a mentor.
What are helpful resources?
In addition to the recommendations above, it is also important to identify and utilize additional resources that are available in your community and online. Some examples include:
Sibshops: This is a curriculum created by Don Meyer to provide siblings a safe and fun place to talk about the good and the sometimes not so good things about having a sibling with special needs. Currently, ChanceLight® Autism Services (ChanceLight®) therapists host Sibshops for siblings ages 4-10 at the Greenville, Rock Hill and Anderson clinics. Our regular therapy sessions in the homes and clinics typically don’t include much time interacting with our client’s siblings. The Sibshops allow us the opportunity to focus specifically on siblings. We want them to know how much we care about them and it provides them a safe place to express themselves with people who understand the challenges of living with someone with autism. We use fun games and activities to help foster discussions. For more information regarding scheduled Sibshops events, please contact your local clinic or visit the events page on the ChanceLight® web site.
SibTeen: This is a private Facebook group for teenage siblings to connect with peers who are facing similar struggles. It provides teens an opportunity to share concerns, frustrations and other helpful information with others. Click here for more information.
SibNet: This is an online forum for adults to share experiences. Click here for more information.
Organization for Autism Research’s (OAR): The OAR launched an Autism Sibling Support Initiative that offers young children and teenagers guidance on how to address issues that arise when you have a brother or sister with autism. Click here for more information.
There are also books available that siblings might enjoy reading such as:
The Sibling Slam Book: What It’s Really Like to Have A Brother or Sister with Special Needs by Donald J. Meyer (Editor) (2005)
Andy and His Yellow Frisbee by Mary Thompson (1996)
Ian’s Walk: A Story about Autism by Laurie Lears and Karen Ritz (2003)
Living with a Brother or Sister with Special Needs: A Book for Sibs by Don Meyer and Patricia F. Vadasy (1996).
In addition to the challengers, there are many positives that result from growing up with a sibling with autism. As adults, many typically developing siblings have reported they learned patience, compassion and humility as a result of their experiences. Children with autism are unique and incredibly special and once siblings understand how to better support their brother or sister with autism it makes it easier on everyone and can further enhance their sibling bond.