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n late March, Michelle Byamugisha reached out to a local celebrity in an email with the subject line “A Message for Your Biggest Fan, My Autistic Brother.” It was two weeks into the coronavirus-related lockdown, and her 34-year-old brother, who has significant speech challenges and likes to be called Mark B, was distraught. Deprived of his cooking class, bowling and other favorite activities, he was feeling so low he could barely get out of bed.As the family discussed what to do, Byamugisha had an idea. Her brother is fascinated by weather and has for years tuned in every evening to broadcasts from meteorologist Steve Rudin of WJLA in Washington, D.C. What if Mark B heard from Rudin directly? That might jolt him out of the doldrums, Byamugisha reasoned.
In her email, Byamugisha explained Mark B’s distress, noting that the loss of routine “is especially difficult for someone on the autism spectrum.” Then she made a request: “If you have a moment,” she wrote, “it would be incredible if you could record a video message for my brother. It would lift his spirits exponentially.” She was not counting on a response but thought it was worth a shot if it could help her brother.
Siblings such as Byamugisha often play an important support role in an autistic person’s life, but they are in some ways the forgotten family members in autism research. Though the younger brothers and sisters of children with autism attract expert attention because of their higher chances of having the condition, studies about the experience of having an autistic sibling are sparse. And until about 20 years ago, the few that existed started from the premise that a child with autism was a problem for the other children in the home.
Over the past decade or so, however, researchers have begun exploring siblings’ actual experiences, and they are learning that autism flavors these relationships in myriad ways. “It’s not that disability is this outside force. Disability is actually part of the relationship,” says Ariella Meltzer, a research fellow at the Centre for Social Impact at the University of New South Wales in Australia. “It’s part of the essence, part of what’s communicated and felt between siblings.”
The relationship can have upsides for both the typical and autistic siblings. A typical child may develop qualities such as maturity, patience, resilience and empathy. And for a child with autism who finds socializing challenging, the banter and bickering of siblinghood may provide a meaningful experience of friendship.
Although having an autistic sibling can be difficult at times, many typical children feel protective of their autistic brother or sister and invested in their sibling’s success. They may act as translators if their sibling’s speech sounds garbled to strangers, and they may understand their brother or sister’s needs and abilities even better than their parents do. “For many siblings, diversity training begins before breakfast, 365 days a year, and starts at a very, very young age,” says Emily Holl, director of the Sibling Support Project, a nonprofit organization based in Bellevue, Washington.
Bolstering the bond between siblings when one has autism has practical benefits for families. As parents age and become unable to care for their adult children with autism, siblings often become the principal caregivers. And they are more likely to take on these duties willingly, research suggests, when there is a history of shared closeness.
Michelle Byamugisha, 27, who works in public relations and lives in Washington, D.C., and her other brother Jeremy have kept Mark B’s needs central as they have gone about building their adult lives. Jeremy Byamugisha, 32, who is an accountant, still lives with Mark B and their parents in Gaithersburg, Maryland, and helps with Mark B’s care. “It has made me patient,” Jeremy says. “Mark has had a big influence on that.” For her part, Michelle is careful not to bring home friends until she knows they are keepers, because Mark B will ask about them (and remember their birthdays) forever. “It just kind of creates this shared commitment between me and Jeremy, to just only want to bring nothing but peace and stability to the family,” she says.
In return, Mark B cherishes them. “It’s one of the first things he says when he meets people. He’s like, ‘I’m Mark B, I have a sister, I have a brother.’ He gives them the whole rundown about my life and Jeremy’s life,” Michelle says. “To have a brother that is so happy to see me and so excited by every development in my life, it’s like having a cheerleader through thick and thin.”