This guest post was written by Danielle, a mother of 2 who lives in Canada. She grew up in a family of 6 with an older sister and two younger brothers with autism. She shares her story of being a an autism sibling.
Growing up with two brothers with autism
I was always the nice kid, the “she will help out and volunteer for this for sure!” kid. I got all of the Good Samaritan awards because I was just so nice and so helpful. Or perhaps it was because I was the girl who had two brothers with Autism. By default, I was the helper and the good one. Or maybe there was a little bit of “her life is so hard but she keeps going! Good for her!” in there but we will never know for sure. What I do know is that it was because of my brothers that I worked perhaps to get good grades. I wanted to prove myself and be able to go out and change the world.
When I think about my experiences growing up with my brothers there are some parts that were really hard and others that I wouldn’t change for the world.
There are days when I found myself wishing that I had a sibling that was “normal” like my friends. I couldn’t wait to go on and get out of the house and live my own life. These are feelings that lead me to feel guilty and ungrateful like I was being a bad sister. It has taken me a long time, and a lot of self-reflection to get to the point where I could accept that I was not being ungrateful for my family or my experiences by feeling this way.
Being an autism sibling: The guilt
The truth is that autism was hard to grow up around sometimes. It meant a lot of missed social outings. It was my room getting destroyed. It was not being able to do or have what I wanted and overall it was a lot of sacrifices. I learned how important these sacrifices were as I got older. At the time, while I was sitting there looking at all that I was missing out on, it wasn’t clear. So yes, autism to me as a sibling means struggle, frustration, sacrifice and it means wishing things could be different and then feeling guilty about it.
It means a lot of appointments with a lot of doctors who ask a lot of questions. It meant a lot of “but why can’t I…” and “but he gets to go…” and “but my friends are allowed to…” with no good answers. It meant people always asking you weird questions about your family and sometimes people giving you pity that you didn’t ask for. These are things that I don’t think get talked about enough when we talk about an autism family unit. My parents did their absolute best for all of us and tried to give us all the opportunities that they could but there are just some things that you have to accept will be different for your family than it is for the family down the street and that that is ok.
In the end, being an autism sibling meant my life wasn’t always easy. but the truth is I wouldn’t trade any of these experiences for anyone else’s.
Having siblings with autism and the struggles that came with it also meant opportunities to learn and grow in ways that no one else gets the privilege to do.
It meant getting to learn more about myself quickly and discovering and accepting my strengths and weaknesses at a younger age than a lot of my friends. It means getting to meet a lot of different people who all have their own stories to tell. It means getting to have a strong connection with my sibling that no one else can understand because they don’t “get” them like I do.
There is something to be said about the connection you can have with someone who doesn’t talk to you in conventional ways. You gain these fierce protective instincts when you start to learn what a cruel place the world can be. You experience an overwhelming sense of joy for their seemingly small accomplishments because you know how big those accomplishments actually are. These things make the struggles, frustrations and heartbreak, not only easier to deal with but ultimately worth it.
This is a small glimpse into what my life as an autism sibling is like. I have grown up and moved on and have my own family now but these experiences continue to shape who I am and the life I lead.
Thank you so much for reading my story at to The Autism Cafe for this opportunity to share my perspective.
Danielle is a mother of 2 who lives in Canada. She grew up in a family of 6 with an older sister and two younger brothers with autism as well as other diagnoses. The older of the two is also deaf and has a diagnosis of OCD and a learning disability. The youngest is diagnosed with epilepsy and PICA and is considered nonverbal. She was diagnosed with a generalized anxiety disorder in her 20s but was always an anxious kid. Danielle has worked in many different positions in her career that have always somehow been in the autism or disability field. She currently works as an educational assistant for her local school board. She enjoys teaching and writing about autism, anxiety, and mental health.
How about you? Share your experiences as an autism sibling below.
Here are a few posts about Charlie and Jude’s relationship: