News and Knowledge

One afternoon I got a phone call from a woman living in another state hundreds of miles away from her childhood home, where her elderly mother and brother still lived. Her mom had just passed away, and she did not know what was going to happen to her brother, who was 60 years old and had never spent a night away from his mother in his life. The sister did not know what types of supports her brother was receiving or if there was a plan in place for him after her mother died. I was able to give her a referral, but I never found out what happened to him.

Having a sibling who has high support needs changes the dynamic in sibling relationships. Many individuals diagnosed with autism are still living at home with parents long after their typical siblings have moved out. Plans that are made when children are young may need to change over time, but those conversations can be difficult to start.

Jane’s and John’s (not their real names) family situation is a good example. In their sixties, they are approaching retirement. They have three adult children. One of their two sons, the middle child, has autism. “When we made the will,” Jane says, “our boys were very close, and we chose our oldest to be his guardian. But our oldest son hasn’t lived at home for 18 years and is no longer close to his brother or even very patient with him. He moved away, and they only see each other a couple of times a year.”

They are concerned about what will happen to their son when they are no longer around to take care of him. They are considering changing their plans for guardianship, but it is an emotional topic. They wonder how their children will receive this decision. Will it be a relief or will it cause a problem? 

They are not alone in facing this dilemma. For example, a friend told me her daughter had always assumed she would take care of her brother with autism when her mom was gone. She understands how much time her mom spends taking care of her brother, providing transportation and overseeing the staff that provides day-to-day care. Now, married with children of her own and a career, she doubts her ability to handle it all. Plans can also change if a sibling’s spouse or significant other is not willing to take on the responsibility of guardianship. The discussion about who will care for a sibling and assume guardianship after Mom and Dad are gone is the elephant in the room at many family gatherings.

Harriet Redman, founder of Wisconsibs in Appleton, Wisconsin, has seen this scenario play out many times. According to Redman, “Fewer than half of families have specific plans for the future of their relative with a disability. But even when there are plans, siblings are often not fully aware of them.” Wisconsibs provides resources, including suggestions for how to begin the dialogue about future planning and tools siblings can use to prepare.

With support from OAR, Wisconsibs and the Autism Society of Southeastern Wisconsin are presenting a sibling conference in Milwaukee this spring. In addition to a Sibshop facilitator training, Redman will present a workshop for adult siblings to give them strategies and tips for working with their parents and other siblings to make sure there is a plan in place or to create a plan if one is needed.

A family’s plans to care for a person with autism well into adulthood may change for a variety of circumstances. To ensure continuity of care and family harmony, frequent communication, making sure plans for the future of the person with a disability are in place, and sharing those plans with everyone in the family are necessary steps to a safe and healthy future for everyone in the family.

Emily Levine has been the executive director of the Autism Society of Southeastern Wisconsin since 2006. In this role, she oversees a staff offering support, social networking opportunities, and educational events. She also raises funds to support the Autism Society’s mission: to improve the lives of all affected by autism. Emily and her husband, Robert Levine, Milwaukee Symphony principal violist, have an adult son who loves sports and politics and lives with autism, his parents, and two cats in Milwaukee.