Growing Up, Away and Together | Organization for Autism Research

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As a sibling of a person with autism, I’ve had a lot of questions in my lifetime. As soon as I share this information with people, I get the typical questions, like if it was hard growing up or am I mad at my parents at all for not giving me as much attention — you know, the juicy therapy questions. Some have asked what my sister’s tics are and if she is a savant like “Rain Man” with counting cards or toothpicks. Others want to know if she is mute. I’m usually never caught off guard with these questions and have answered them a thousand times, but last year I was asked a new one, and I needed time to ponder it. As I explained our story in a nutshell, a friend from work asked me if my sister and I shared any characteristics relevant to autism. I was not sure how to answer initially so I simply said, “Well we’re sisters, so yeah probably.” To me, my sister is a unicorn: one of a kind. Her characteristics are who she is – not just what can be labeled as “autistic.” Autism is a spectrum, after all. “If you live with someone for 15 years and you share their DNA, odds are you will rub off on each other.”

My friend was satisfied with this answer, but I started to think about it more. From what I had gathered, our similarities ended with whatever was established in childhood. As adults, our lives have been extremely different. I got to drive, go to college, get a full time job, get married, buy a house, etc. etc. My sister does not have the same adult experiences I have. My parents are her legal guardians, so she lives with them. She has a vast collection of dolls and barbies that she plays with every day. She volunteers at the library and Beyond I Can and participates in Best Buddies. She doesn’t have to pay bills or cook her own dinner. She doesn’t have to do a lot of things most adults do. But she also doesn’t get to. Time and time again, Hailey has asked me when she will get to drive, have kids, get an apartment, etc. It is so glaringly obvious that she wants to have the same experiences as her peers because she knows she is old enough. That’s the way she looks at milestones in life — an age based system. Whenever these conversations come up, I just tell her that life works out different for everyone. 

As I sadly reminisced on how different we had become, my husband asked me what I was thinking about. I told him this seemingly heavy thought in my head and he just laughed and gave me a list of things that both Hailey and I do. I was kind of surprised, but delighted. Over the years, I thought my connection with her had been wearing away ever since I left home for college. Lo and behold, some things never change. The list includes the following:

  1. Looks: We look very much alike. Just take me and squish me down half a foot. Then you will have my sister. That means we have to deal with unibrows, thick curly hair, shadows under our eyes, etc. on a daily basis. 
  2. Tunnel Vision: We tend to fixate on things that aren’t in our control. When it was ladybug season last year, my sister always had a flyswatter or vacuum in hand until she was convinced none in the house were alive. When we had mice in the house, I stayed up for weeks trying to catch them in an assortment of ways. I only slept like a normal person once I didn’t see any more movement at 3am. 
  3. Tics: We pull our eyelashes and eyebrows out when we are in deep thought or stressed about something. We also pick at our lips. And pop our knuckles. It is weird, I know.
  4. Loudness: Apparently we have the same cackle. We both speak loud and yawn even louder. More of an annoying trait, but a shared one all the same. 
  5. Eccentric Media: Hailey and I can always find something to agree on watching. Usually the weirder, the better. Claymation, cartoons, artsy films, etc. If nothing is on, Over the Garden Wall is our current go-to. 
  6. Love of Drawing: I went to art school and Hailey struggles with the basics, but it is our pastime. Whenever we were left to our own devices, paper and crayons could occupy us for hours, and they still do today.
  7. Comfort-Driven Decision Making: If the sweater is made of wool or the tag is too stiff, we aren’t wearing it. If the shoe feels even slightly tight or the waistband is rubbing against skin, we won’t wear it. We live in pajamas and leggings. 
  8. Obsessiveness: We like what we like. We both will listen to a single song over and over again. We will watch a TV show or movie we like on repeat. If we have an idea of something we want to eat that day, it has to happen. We won’t let it go.
  9. Difficulty With The Construct of Time: We do not recognize time constraints others hold for us. We are both constantly running late. And yet, we both expect others to show up when they say they will. Not early and not late. 
  10. Desire for Freedom: We both in our own ways crave to be let loose from the expectations of the lives we live. Independence is something we may achieve differently but it is something we both have always desired.

Regardless of time and distance, I can safely say there are characteristics and traits we share in our adult lives that either developed in adulthood or were there from the beginning. This means that in some ways, Hailey and I are both living a shared authentic adult lifestyle. We both have moments of pain and joy every day. We both have to answer to authority figures. We both lack discipline for our favorite things. We both want to live our best lives. I shared this with my friend at work and said, “Whether some of these could be found on the spectrum or a co-occurring condition, they are definitely all a part of being sisters.”

Hannah Jones Knight works as a designer in Indianapolis but is also an advocate for autism awareness and neurodiversity in the workforce. Her passion comes from her younger sister who is on the spectrum. When she is not working, you can find Hannah drawing comics or binge watching The Office on Netflix. Typical millennial. Her goal in 2020 is to get more involved in the ASD community by continuing her research from her Masters studies and spending more one on one time with her sister — perhaps even a podcast. 

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