What to Expect as a Sibling of Someone With Autism
by Lisa DiFalco
What It’s Like to Have a Sibling With Autism
There is plenty of focus on the parents of children with autism and how to provide support and guidance to them. However, what is the typical experience of developing siblings who live in a household addressing the needs of an autistic child? Are resources available that focus on their needs and what they may be trying to communicate to their autistic sibling, to parents and to others? Siblings of an autistic individual may feel overlooked and need others to understand the experience from their perspective. Natalie’s personal story and a useful resource provide understanding of the situation and help for other children in the family. Understand how siblings of someone with autism may experience their lives.
Natalie Shares Her Experience
Natalie writes for AutismWorks and shares her experience of having a younger sibling on the spectrum. She has a brother, Pat, who has a unique penchant for recalling dates, such as the release date of a Beatles’ song. Pat also has the ability to recite pages verbatim from memory of a book that he has just read. As a person with autism, his brain works in unique ways, and he has been blessed with special gifts.
However, what was growing up like for Natalie, his older sister? She remembers strange looks from strangers and hesitancy from friends when she eventually decided to invite them over. In addition, Pat and his needs were the priority for the family.
She struggled with the desire to exceed at everything and prove that her parents were good parents. She pushed herself to be an amazing athlete and the smartest student. This urge came from within and was in no way pressed upon her from her parents. She wrote:
“Sometimes, when a sibling has a disability, you feel pressure to compensate for it. I wanted to be the best at everything and go above and beyond in every minute detail of my life. I was hyper-aware of my dire need to succeed for as long as I can remember.”
From Natalie’s viewpoint, growing up as a sibling of someone with autism was stressful and chaotic. In addition, she grew up quickly, with the perspective of a teen with desires to stay up late or get the newest phone while her brother was struggling with basic life skills.
Siblings deal with conflicting emotions about their affected sibling. At times, she had a love-hate relationship with Pat. As an 8-year-old, she dealt with anxieties such as:
“Why are those kids staring at my brother? What are they saying? Please stop flapping your arms.”
Other children can go to many events that a sibling of a child with autism may not participate in, such as a trip to Disneyland or a violin concert. The sensory issues of a sibling with autism may interfere with school events or family trips. This can be difficult on a developing child growing up in the shadow of an effected sibling.
Natalie writes about the positives. Even though doctors had said that Pat would never be able to speak, he overcame that obstacle and many more, such as tying his shoes, riding a bike and volunteering at the hospital, the library and at homeless shelters. As an adult, she writes about the inspiration and blessings that she has in her life because of Pat. In her words, she shares:
“And if he lives with me for the rest of my life, I will be the luckiest big sister in the whole world to have every day blessed by the honesty, innocence and joy that someone with autism brings. Disabilities bring you back to the bare basics where being kind, helpful, patient and loving are the most important attributes.”
A Resource for Siblings
“Life as an autism sibling: a guide for teens” is a resource developed by two young adult siblings using the feedback of many teens who are growing up with a sister or brother with autism. The stories and tips are based on personal experiences and should be relatable for other young people with a sibling with autism.
The guide addresses common concerns, including:
- “I’m worried about people meeting my brother and asking questions about his ‘weird’ behaviors. How do I explain them in a way that people can actually understand?”
- “When I see friends messing around with their brother and sisters, it makes me realize that I’ll never have those kinds of moments with my sibling. It hurts to know that nothing is ever going to be normal.”
- “I feel like my parents barely notice me because they’re so busy with my sibling. It’s not like I want constant attention, but I wish they’d try keeping up with what’s important to me.”
The guide provides assistance for children on topics including effective communication with other children, their parents, and with their own desire to connect with their sister or brother. Siblings want to be able to help others understand the condition when sensitive questions arise. They yearn to find ways to share joy and experiences with a sibling with autism. In addition, communicating their needs for attention or recognition effectively and calmly to parents is important for the typically developing child. These typical concerns and more are addressed in a simple and direct way to help children as they grow up with a sibling with autism.
As much of the family’s focus is often on handling the needs of a child with special needs, additional resources need to be available for other children attempting to communicate within and outside of their family. Parents, educators, case managers and mental health professionals should gather tools to address this obvious need in affected families.