By Jonathan Slack, Market Research & Development Specialist, AHSS
In some ways, I have always felt extra pressure and responsibility for the well-being of my sister Jennifer, who is on the autism spectrum. Looking back at my time in high school I clearly gave up a “normal” social life so I could help take care of her. My parents had never asked me to do this, and in passing they always insisted that they did not want me to sacrifice anything for my sister. In their eyes the sacrificing was in their job description, not mine.
Of course like any teenager I did not heed their words. My day would consist of going to school, running track, completing homework, spending time with Jennifer, and then falling asleep only to repeat every single day. Going to Northwestern University was in some ways horrifying, since I felt guilty that the “team” that took care of Jennifer was going to be down one man. But it was also liberating, because I finally allowed myself to have a social life.
During my senior year at Northwestern, I realized I had been putting a different type of pressure on myself when I took a class called Leadership, Ethics and You. In the class every student had to openly discuss what motivated them and what their strengths and weaknesses were. I realized that ever since high school my main motivation for doing well in school was that I believed I would eventually need to take care of Jennifer. I knew my parents were not going to be around forever, and I saw firsthand how expensive services are for people on the spectrum. Therefore, I believed I needed to put myself in a position to get a high paying job that could pay her bills.
I also hold a deep fear that genetics plays a major role in causing autism, and that when I have children they will be on the spectrum. This sentiment combined with my overall feelings of responsibility for my sister, made the pressure I was feeling so extraordinary that I put more importance on getting a high-paying job than on actually enjoying one.
The class helped me understand that I needed to put myself first and be happy before I could help the people around me. Now I am working at Autism Home Support Services and I know everything I do is helping individuals with autism and their families – and that makes me happy.
I wish I had told my parents how I felt and how much pressure I had put myself under long before my college graduation. For all of the siblings trying to be the “good” brother or sister, I know how you feel. Even if your parents never explicitly demand it, you want to be the “perfect child” and you want to do everything you possibly can to help your sibling. I learned firsthand that all of the pressure I put myself under made me miserable, was unnecessary, and was counterproductive to actually putting me in a position to help Jennifer.
To all the individuals with siblings on the spectrum, know that you are not alone and that you do not have to nor should you put this pressure on yourself. You don’t have to keep your feelings and thoughts to yourself – talk to your parents about all of the extra pressure you are feeling.
For all of the parents with a child with autism, sit down with all of your neurologically typical children and make sure they are not feeling the immense pressure I was putting myself under. They are not alone and neither are you.