News and Knowledge

It’s always exciting news when OAR expands its collection of informational materials for members of the autism community. Today’s announcement is even more meaningful because we’re shining the spotlight on an important but often overlooked demographic: brothers and sisters of individuals with autism. To kick off its “Autism Sibling Support” initiative, OAR is releasing a set of three new resources that are now available online for free download and printing: one for parents, another for teenage siblings, and a third for young siblings.

While some organizations have contributed significantly to the task of supporting brothers and sisters of individuals with autism, OAR recognizes that these future advocates, potential caretakers, and lifelong friends need more. Many siblings are faced with overwhelming challenges, responsibilities, and emotions before they’re able to develop coping strategies that parents use. 

The “Autism Sibling Support” resources offer practical advice on how to address some of the difficulties they’re likely to experience. What’s unique, too, is that these resources can be effective when used independently or as a supplement to a more comprehensive support plan/program.

A Thorough Development Process

After researching existing resources for and about siblings with autism and other special needs, OAR sent out a survey to parents and teen siblings in early June. The survey inquired about the ups and downs brothers and sisters experience while growing up with someone on the spectrum. The responses helped OAR determine which issues needed to be covered (and prioritized) within each resource.

Almost unanimously, the siblings of children with autism specified several key challenges they were having difficulty dealing with. For example, there was a consensus that children with autism sometimes behave in an “embarrassing” way. This may also be true for siblings without an autism diagnosis, but having autism thrown into the mix means that dealing with embarrassment is completely different. 

OAR then drew on scholarly research and the work of other excellent organizations (such as Don Meyer’s Sibling Support Project and a UK-based organization, Sibs) to formulate ideas on how to cope with each issue and presented these ideas in ways that are appropriate for each of the three target audiences.

Parents, siblings, and professionals who graciously reviewed the first draft of each resource affirmed OAR’s efforts.  Their feedback made the resources more useful.  One autism mom helped us make sure that the resources truly acknowledged the tough role siblings take on in the life of their brother or sister with autism and that these siblings need people in their lives that they are able to confide in. An autism professional highlighted the concerns that many teenage siblings have about the future, when parents are no longer able to care for their brother or sister with autism. OAR took note of these comments and made changes that are reflected in the final products.

Bringing the Resources to Life

A graphic designer took the final documents and transformed each one into resources designed to appeal to the specific audience.

For young children, OAR developed Autism, My Sibling, and Me, a workbook specifically designed to engage this age group. Colorful characters accompany readers as they learn about what autism means. The resource also aims to guide young siblings through any autism-related questions and concerns they may have. The workbook is available now as a printable PDF document and will be soon be available in hard copy. See below for more details.

For teenage siblings, OAR created Life as an Autism Sibling: A Guide for Teens, an online handbook (available as a PDF document) written in a Q&A format. It addresses the challenges that teenage siblings might face as a result of having a brother or sister with autism, while also providing advice on how to deal with such challenges a positive manner. The resource is also filled with testimonials from other teenage siblings, which helps make it an authentic read.

Brothers, Sisters, and Autism: A Parent’s Guide to Supporting Siblings (which is available as a PDF document) outlines what mothers and fathers can do to support children who don’t have autism. The topics covered range from dealing with perceived discrepancies in fairness to facilitating a positive relationship between siblings. The flexibility of this guide makes it valuable to many parents, some of whom will read it once while others will use it as a point of reference whenever it is needed.

Providing Families with Information

After months of hard work and creativity from OAR’s summer interns, siblings, parents, and professionals, OAR is pleased to announce that each resource is now available online at OAR’s Web site! Simply go to the “Autism Sibling Support” initaitive page to download and print all of the materials.

OAR anticipates that these will be indispensable additions to the home of any family that has children with and without autism diagnoses. OAR looks forward to sharing this set of resources with clinical professionals, support groups, school resource centers, and any other organizations that come into contact with autism parents and siblings. 

Special Acknowledgements

The collaborative efforts of all those involved in the production of these resources – especially the parents, siblings, autism professionals, and other community members who filled out surveys or provided feedback on drafts – helped make them even more attuned to the realities that siblings experience.

OAR owes special thanks to graphic designer and autism mom, Lisa Cain, for giving color and life to this important content.

Finally, OAR acknowledges the excellent work of its summer interns, Lauren Laverick-Brown and Jessie Stanek, who are themselves autism siblings. These resources are the product of their hard work, passion, and intelligence and stand ready to benefit autism siblings like them.