The Challenges and Rewards of Growing Up with Three Autistic Brothers

Ali Carbone, sister to three brothers with autism, discusses her new memoir called “What Are You Looking At?” Ali shares her firsthand perspective and gives light to the untold stories of siblings with intellectual and developmental disabilities (IDD).

On April 3rd, sister-advocate Ali Carbone published her first memoir titled What Are You Looking At?. Following the Carbone family from adolescence to adulthood, the memoir explores Ali’s personal experience as the sibling of three brothers with autism; Michael, Anthony, and Luke; who she refers to throughout the book as “the boys”.

“No one ever really talks about us— the siblings,” Ali said. “Even though we’re the ones who will be here, caring for our siblings, long after our parents are gone. Our perspective is always overlooked. How we feel, how our role in our family has affected us, and how that shows up in life outside of the homes we were raised in. The inability to put yourself first, or deal with emotions like a normal adult. The confusion and resentment, but the deep knowing that at the end of the day, this is the way it has to be.”

Throughout the book, Ali touches on topics like self-identity, sibling guardianship, growing pains, moving the boys into a children’s residential program, bullying from a community that doesn’t understand disability, finding a way out of depression through a supportive community, and learning to let go.

“I wrote this book because the stories of siblings are usually untold,” she continued. “And when we do hear them, the story is always about our relationship with them. They’re the main characters, even in our own story. What Are You Looking At? details the experience of growing up with so much of your identity being defined by your circumstances.”

The three Carbone brothers recently transitioned from a children’s residential program to Citizens Options Unlimited’s adult group homes: Michael in Massapequa and Anthony and Luke in Lake Grove.

“Everything changed when the boys went into the group home. It was like the blinders came off after being on autopilot and we realized we’d been living in survival mode for 20-plus years,” Ali said. “The group homes make it possible to have some quality of life — for the entire family. My brothers started eating and doing things we’d never thought. My parents got their lives back, and the help they deserved. And I got freedom. From the pressure of having to care for them by myself, and from the fear that they’d never live a meaningful adult life.”