Meet Josée-Renée. She's an artist and her younger sister has Asperger's Syndrome. We met Josée after she wrote on her personal blog:
"I’ve done some research for the past few days starting by googling “how to survive with an autistic sibling”...Hopefully I can find a support group or other people like me so I can find a way to deal with it."
In this profile, Josée-Renée gives a candid, personal glimpse into her relationship with her sister. And she shares the often unspoken aspects of autism sibling experiences.
Tell us about yourself, and your sister.
I'm 22 and basically an art student. I did two years of a graphic design program to switch into a fine art program. I didn't actually get into that fine arts program but instead, the general arts one — which is close enough, I guess. I see the beauty in everything and I think that my goal in life is to just make people happy. I have anxiety and some depression.
My sister is 20 and she was diagnosed with Asperger's when she was between the ages of 16 and 18, so we didn't have many of the tools that we would've had if she had been diagnosed sooner. She is in a mechanical engineering program.
you and your sister live together — What lessons have you learned from living independently?
It's tough. We do have some issues communicating with each other, mainly because I have a hard time doing so without the fear of hurting her feelings and having her potentially lash out and do something bad. In the beginning, we had planned that I would cook and she would clean. Eventually, I was cooking and cleaning every second load of dishes, which I didn't feel was fair at all. We are in a small apartment and her room is the smallest so she tends to take over the living room. With all of this, I have learned that alone time is very limited and precious. Growing up, I had spent a majority of my time being alone because I didn't have many friends. So now I need this alone time in order to function and get things done. This is nearly impossible when my sister is around because she hates being alone and she hates silence. There are many times that I leave the apartment to go to the quiet study room at school to study because she has music playing loudly on repeat.
How has your relationship with your sister evolved since childhood?
We shared the same bedroom until I think I was about 14 or 15. Looking back at our childhood and even now, we're almost treated as if we're twins because we receive similar gifts and we used to wear the same outfits but in different colors. We used to get along pretty well back then. Now, we do have our good days here and there, although we have a few major meltdowns. My parents threaten to pack up all our stuff to bring us back home but I don't think they realize that that will just make things worse. We get along better when we live apart from each other.
Envy comes into play sometimes, like when my school had a fall reading week and hers didn't. She was envious of how "busy" I was compared to her. I couldn't control the fact that I didn't have classes that week and yet, I was still guilty of having all this free time. I do most definitely feel like the bad guy/the sibling that makes all the bad decisions. Like the other day, I wanted to tell her about a cool new lip tint peel thing from China and how I bought some for super cheap off of eBay. Her response was along the lines of "why are you spending all this money!" She disapproved of the idea that I spent six of my birthday dollars on tubes of lip stuff. And yet, she likes to tell me about all the colors of lipstick she owns. I mostly spend the little bit of money I do have on groceries for us. It feels like she gets to mom me around because she was able to get two jobs while I am still struggling to find one.
What do you wish people knew about having a sibling with Asperger's syndrome?
I used to tell people that she is basically like Sheldon Cooper on Big Bang Theory — till I found out that the character is just like that and is not actually on the spectrum. What I wish people knew is that she doesn't see things the way that "regular" people do. I don't think she realizes that what she says can be hurtful. I remember one car ride with Mom, she was going on on how she was going to make more money than me because she was going to be a mechanical engineer and I was just an artist (she was graduating high school). I was hurt by her cockiness and just replied: what if you fail? That did indeed shut her up right then and there. And turned out I was right. She didn't foresee the university program to be so difficult. After her first year, she transferred to a college that also had better help for those with disabilities.
Who are your strongest resources and supporters for your experience with a loved one on the spectrum?
My main supporters right now are two particular friends. One I had met in high school and if I'm feeling down and I want to have my spirits lifted really quick, she's my go-to gal. My other friend, I had met in college and she has been with me through my biggest anxiety attacks and has helped me through a lot. I basically tell her everything that's going on so she's always up to date on the situation. Resources I feel are tough to find, especially for my kind of situation. I tried reading some books but they were more geared towards families with children where one of them would be autistic. I am part of a few sibling groups on Facebook but I find that a majority of the posts on there are happy and uplifting, and it's like, what about the bad days and meltdowns? These sort of things happen too!
we have to ask: as an artist — what inspires your work?
Well, this past week my sister and I had a bit of a kerfuffle if you wish, and it just put me into a depression almost. I didn't know what to do so after a job interview that ended terribly, so I went to the nearest art store and bought myself some canvases and took a mental health day. It's actually working in my favor now since I'm kind of working on a series that I think I will actually try to get displayed in my favorite café. But I'm not only a painter. I'm a photographer, baker, designer, crafter, granny in the making, you name it. Whenever an idea strikes, I go for it and see what happens.