By, Jillian Trevarthen
Having a child with autism in the home affects the entire household and the relationships the child has with each member of the family. As a parent to a child with autism, it is crucial to be aware of how your child develops those relationships, especially ones with non-autistic siblings. The bond that siblings can have is something that’s truly special and unique, and understanding what that looks like as a parent when one sibling has autism and one does not is key for helping to facilitate healthy growth of that relationship from both sides.
So, what’s it really like growing up side-by-side with a sibling with a developmental disability like autism? To gain some insight and perspective, I interviewed Spenser, a nineteen-year-old from La Mirada, CA, about his life with a close-in-age brother with non-verbal autism.
Tell me about yourself. My name is Spenser, I’m 19, and I’m an Art major at my university. I enjoy graphic design, outdoor adventure, and the EDM genre of music.
Tell me about your brother. I have a little brother named Max, and he has autism. He is about a year younger than me and is non-verbal. Max lives at home with my dad and my grandma and is homeschooled by my dad. He loves Toy Story, Sesame Street, and doing puzzles.
How did your family explain Max’s disorder to you? I’m not sure if it was ever really explicitly explained to me, per se. I’ve had aspects of autism explained to me as I’ve grown up and gotten older, and I know some of the medical stuff behind it and the range of the spectrum and other things along those lines, but I can’t really remember if it was explicitly explained to me. Growing up it never really felt like “a condition” or anything, obviously, his disability was extremely apparent but it felt very normalized, you know? Like Max was just Max, and yeah he has autism but it was never this giant glaring thing that was explained to me, at least not that I can remember. He was always just my little brother.
What role did you play for your brother growing up? I was just his big brother, a normal brother relationship I guess. Just taking care of him, playing with him, trying to make sure I’m there for him and being loving and all that stuff. A friend, a brother, etc.
How has Max’s disorder affected your family? It’s definitely changed our lives, to say the least. Day-to-day living with and caring for someone with autism is extremely different from just being with a “normal” sibling, for lack of a better word. Communicating with them is drastically different meals, chores, and a whole bunch of simple day-to-day tasks are different. Sometimes it can be frustrating, admittedly. When Max can’t effectively communicate what he’s trying to say or get out what he’s trying to convey it can be frustrating when he gets frustrated that I can’t understand what he wants. Meeting the needs of someone with special needs requires far more work and time than doing the same with someone without special needs. I’ve been lucky that both one, my relationship with Max has been super normalized by my dad and in the day-to-day, he’s just my little brother Max, and two, my dad has been the one who has navigated all the challenges associated with caring for and raising a child with autism. I have so much respect for my dad. It’s definitely something that is difficult to navigate versus just raising and living with someone without autism though, for sure.
Can you describe what your relationship is like now that you’re away at college? (both with Max and with your family as a whole) Not just with Max, but with my entire family, being away at college has made me so much more appreciative of them. Not being around them all the time has made me miss being around them, way more homesick than I would ever be during high school. In a weird way the distance has brought me closer to everyone in my family: Whenever I visit home now it’s a really heartwarming experience, and it makes me feel really loved and appreciated. Whether it’s FaceTiming them every week, or the few times a quarter I get to go home, now whenever I am able to see Max or anyone else in my family it is a much more meaningful experience since I don’t get to see them nearly as often.
What do you love about Max? He’s a very happy, loving, affectionate guy. Seeing how he acts with our family and how happy he is on a day-to-day basis makes me proud to be his big brother.
Is there anything you would change about Max and/or your relationship with him? Obviously, if I could change his autism and take it away so he could be independent and live his own life I would, but other than that I wouldn’t change anything about how Max and I are with each other.
Autism can affect the family dynamic in many ways, and it’s important to understand the unique needs and perspectives that each family member can have with a child with autism in the home. Siblings, especially those close in age like Spenser to Max, can be seen as a friend or a peer to children with autism, and it’s important that families understand how impactful that role can be for both children.
If you have a child with autism and other children without autism, it is recommended that you make sure:
– Siblings are educated and informed about Autism Spectrum Disorder
– Siblings learn the proper ways of interacting with your child with autism to develop a strong relationship with them
– Siblings have the attention they need and time with family apart from your child with autism
If you would like to learn more about ASD and gain support for dealing with its effects, follow us or reach out today.