I Had No Idea How My Son’s Autism Would Affect His Little Sister

When my son and daughter were babies, I promised myself that they would always feel safe in our home. In my heart, I knew that a calm and safe home environment was one of the most important aspects of parenting for me.

But then my son Sam started acting aggressively towards his little sister Elle.

Sam is on the autism spectrum. He was diagnosed at age five, after my instincts had told me, since he was born, that something was off. Sam is now almost ten, and his sister Elle is eight. His behavior is unpredictable, and he can be violent. One moment, everything is fine; the next, Sam explodes and will sometimes try to hurt his younger sister, who is much smaller. He has tried to strangle her and has pushed her down the stairs.

Around the same time that Sam started acting aggressively with Elle, my adventurous, daredevil daughter became afraid of nearly everything. I noticed she was uncomfortable in crowds and would jump at loud noises. She was terrified of tornadoes, even though we live where they are rare. She was petrified of anyone using a wheelchair or crutches. She felt that if she went near these people, she would develop the same ailments. She started to get stomach aches, and worried constantly about the possibility of our house burning down. Elle also began to refuse to go to school, and at night she couldn’t sleep from worrying about the next day. Even preferred activities, like horseback riding, were a chore for her due to her fear.

I began to suspect that there was a connection between Elle’s fear and Sam’s behavior. Plain and simply, my little girl didn’t always feel safe at home.

Often it feels like my full-time job is micromanaging Sam’s environment, his services, and his education. But I felt like I had overlooked Elle’s needs over the four years since Sam’s diagnosis. And now, she was crying out for help.

I reached out to the school to get social emotional testing. Elle met over the course of a few weeks with the school psychologist, where she completed several standardized tests with fancy acronyms. The tests mainly involved Elle assigning her emotions to given situations, or vice versa. I also filled out extensive questionnaires about her anxiety. The district then analyzed all this data and compiled it into a report. After testing was complete, the plan was to meet with the school team to create a plan for Elle to succeed in school, called an IEP. The school psychologist called me to go over the results personally. I had enough experience talking with my son’s providers to know a personal phone call meant the results may be sobering or alarming.

What she told me confirmed my suspicions. Asked during the test what things make her sad, Elle immediately said, “my brother.” She went on to tell the school therapist that her family “would be better without Sam.” She was asked to give each person in her life a color on a five color scale from green to red. Mom and Dad were green, Sam was red.

I looked up studies about how siblings of children with autism can be affected and found the research backs up our own family’s experience. Siblings of children with autism suffer when their needs are consistently overlooked by caregivers, and they can carry the risk of internalizing problems. These problems are rooted in distress emotions, such as sadness, fear, or loneliness, and it often manifests in stomach aches or headaches for children.

In Elle's psychological report, her internalizing behavior was marked as “clinically significant.” The report validated my suspicions about Elle’s struggles and helped me key into what to focus on to help her. I have also learned what triggers Sam, so I can intervene before he becomes violent. And I have doubled my efforts with his providers to improve his violent reactions, particularly towards his sister.

I also found Elle her own therapist, which isn’t always easy. Since the COVID-19 pandemic, more children than ever need help, so many counselors are not accepting new patients. But I put Elle on three waitlists; I told therapists I could be flexible with availability and was surprised by how quickly she moved off the waitlist. It’s important to make yourself as available as possible. If you give a practice very limited availability, you’re probably not going to get a therapist. Once you're on a counselor’s schedule, even if the time slot isn’t optimal, you will be surprised how quickly you can move to a new time when you’re a current patient.

When Sam was diagnosed with autism four years ago, I knew I had a lot to learn, and it wasn't always going to be clear cut. But I didn’t realize how drastically it would affect his little sister. I wish I could tell you there is a magical solution for the anxiety of having a sibling with ASD and explosive behavior. But my family's journey after receiving an autism diagnosis has taught me to never lose sight of one child when caring for another with special needs.

Jennifer E. Rizzo is a freelance writer and mother of two humans and one dog living on Boston's North Shore. A lover of crafting and a maker of all things, Jennifer can usually be found knitting, baking, painting, reading, running or writing.