When people ask me what it’s like to have a sibling with autism, I always struggle with how to respond. I can tell them about how in some ways it’s like having any other sibling. When we were little, Kyle would occasionally mess up my playhouse or do something I’d find embarrassing. I can also share the things that were different growing up. We weren’t able to sing “Happy Birthday” with Kyle in the room because of his sensory issues or I did most of my homework in my mom’s van in the parking lot of a therapist’s office. I can focus on how seeing my mom fighting for my brother’s rights taught me how powerful my own voice can be. I can talk about how our relationship has changed as we’ve both become adults. Certain social things, like humor, that were always so confusing, he now understands and we can joke and tease each other. This improved social knowledge also means he can now frequently tell when I’m just being a drama queen and he’s not afraid to say “Get it together Olivia.”
I admire how amazing of an uncle he is to our niece and nephew and how patient he is with them despite the fact that their loud voices and shrieks clearly bother his ears. Or I can share the harder realities, like the fact that I’m preparing to one day take over being his guardian (while possibly also caring for my parents and my children). When the pandemic first started, my biggest fear was who would look out for Kyle if I died.
What I want parents and other family members to know is this: siblings have their own spectrum of experiences, strengths and challenges, that will change with life circumstances and as they and their brother/sister with autism grow as individuals. Know that fierce love and deep resentment (and a whole mix of other emotions) can co-exist at the same time. Don’t make assumptions about our thoughts or feelings. Ask us and, most importantly, really listen.
- Olivia Macdonald