At 21, Nassan is the youngest of four children, with three sisters who have always been his protectors.
Though Nassan is 6 feet, 6 inches tall and 330 pounds, he is also nonverbal and profoundly autistic. Though he may look like an adult, he has an intellectual disability and epilepsy that require round-the-clock support. When he gets frustrated or confused, he can have meltdowns that sometimes turn violent.
Autism affects the entire family, not just the individual. For 23-year-old Hassana, the sibling closest to Nassan in age, it meant growing up quickly. She felt responsible for understanding her brother’s needs and protecting him from people who didn’t.
“I am my brother’s keeper. Sometimes I feel like I’m the only one who understands him,” Hassana said. “I take that big sister role seriously. And some of the situations that we go through can be very isolating to handle and manage.”
Both Hassana and sister Niya, 31, say they are grateful for Autism New Jersey’s Sibling Connection Sessions, which give adult sisters and brothers of individuals with autism a space to share experiences and connect with others who understand. The next session will be held on March 24.
“For so long, nobody was talking about siblings,” Niya said. “No one was creating space for us.”
Being an autism sibling can be both challenging and rewarding. For Nassan’s sisters, it has shaped their career paths. Hassana is pursuing a Ph.D. in justice law and criminology at American University, researching the intersection of Black neurodiversity and the criminal justice system. Niya, a writer, created a non-verbal character with autism for the Netflix animated kids’ show Ada Twist, Scientist, a character inspired and named after Nassan.
Hassana lives in Maryland and Niya is in California, but both try to return home to New Jersey whenever they can. Their mom, Nadine, runs Nassan’s Place, an East Orange-based nonprofit that helps children and families affected by autism in urban communities.
Over time, Hassana and Niya have both learned to release the guilt they once felt about not being physically present more often for their brother and their mother.
“We see what our parents are struggling with. We want to support and help them,” Niya said. “But you have to take care of you, too.”
The Sibling Connection sessions they have attended provide a platform for open discussions, emotional support, and valuable resources to help navigate sibling relationships. The sessions are moderated by Autism New Jersey’s Family Wellness Director Amy Golden, M.S., BCBA, LBA, NBC-HWC.
“Many of these siblings have told me that they have grown up feeling like their friends can’t relate to their lives because they don’t have an autistic sister or brother,” Amy said. “When they come to these sessions and hear others describing experiences so similar to their own, they finally feel understood. That sense of connection is something many of them have been missing.”
Siblings of autistic individuals can carry more responsibilities, an experience some experts call “parentification,” when they take on parenting roles at an earlier than usual age to help their parents. They can be overlooked as attention centers on the child with autism, losing parts of childhoods and facing higher risks of anxiety and depression. Often, they help with caretaking while they are still children and later become responsible for long-term care once their parents age.
Yet siblings also report profound benefits: incredible patience and empathy, strong advocacy skills, and a flexible approach to life and relationships.
“The sibling experience is very different from the caregiving experience,” Niya said. “I think this will help more siblings understand that they can get help, too, or that they can be vulnerable, too. And it’s OK. And there’s other people just like them that want to talk to them.”
Autism New Jersey’s Sibling Connection Sessions are free. Registration is required. Search for sessions on our Events page.
Additional Sibling Resources:
- Autism and the Family: Understanding and Supporting Parents and Siblings by Kate E. Fiske
- Siblings of Children With Autism: A Guide for Families by Sandra L. Harris, Ph.D., and Beth A. Glasberg, Ph.D.
- Autism in the Family: Caring and Coping Together by Robert Naseef, Ph.D.
- Autism New Jersey Expands Support to Siblings
- Sibling Interaction