By Brooke Segal
Diagnosis in the Family
Hi my name is Brooke Segal. I am 16 years old. I live in a loving home with two very loving parents and an older sister who I adore and is my best friend. Growing up we always knew my sister was different. She was unlike most of the extroverted kids who surrounded her. At a young age doctors diagnosed her with ADD and ADHD but my parents knew there was more to it than that. After many years of therapists and Doctors, and at age 16, she was diagnosed with Asperger’s syndrome. What did this mean to me? Well it just meant that my sister finally had a name behind the things we had been seeing all these years. It didn’t mean I loved her any less, and it definitely didn’t mean I was going to treat her any differently. Today, my sister is 18 and it has been two years since her diagnosis. I’m not going to sugar coat it, my life having a sister with Asperger’s has not been easy. I’m going to take you through my life of having a sister on the spectrum. I hope someone can read this and say “wow, someone else understands the struggle I am going through,” because for me there aren’t many resources out there. This is a firsthand account of what it has been like.
My sister was born premature at 2 pounds 6 ounces and spent 3 months in neonatal intensive care. I was born 18 months after. My parents tell me my sister’s first words to me were “take her back”. She didn’t like the thought of having someone else in the house taking the attention away from her, but she was stuck with me whether she liked it or not. Our toddler years were very interesting. She was kind of a bully to me. It was always her way or no way. She always yelled over the most stupid things like a red crayon that she wanted that I was using. I didn’t think that one red crayon could cause a whole temper tantrum. To me it was just something to color with but to her it was a huge deal. At that age I never really understood why. Now thinking back to it, it all makes sense. As we grew older we grew closer. Things changed and the stupid little temper tantrums turned into huge bouts of screaming and yelling.
As we both grew into preteens we became best friends. I was the person my sister confided in, and I was her rock. I felt like the big sister despite her being older than me. It’s not that she wasn’t a good sister, because she was and is the best sister I could have asked for. Its that I was always giving her advice, fighting the bullies for her, and keeping her deepest darkest secrets. She always came to me when she was in an uncomfortable situation, and I was always there to help her. Looking at it now I should have let her become more independent, because I never thought about how that would affect her as she got older – but we will get to that later. In middle school we both attended the same school. I was always her “right hand man.” If anyone messed with my sister I would not tolerate it. There were many situations where she was bullied for being different. That made me so heated and angry. I couldn’t understand why people were so mean to her when she was a good person with no bad intentions. Sometimes she didn’t understand that people were making fun of her, she just laughed and thought it was a joke. Those times really made me upset. I wish she could have noticed it and defended herself – but that’s not her. She didn’t understand because she was different.
When I was in 8th grade my sister moved to high school. That was the scariest thing in the world for me. Knowing I wasn’t going to be there to battle the bullies and help her when she was in sticky situations was so scary, but I didn’t have a choice. I had to let her go. Her freshman year turned my house into a mad house. She couldn’t tolerate the heavy workload and the social scene at school. She was bullied and frequently came home crying about not be able to focus on the classwork. That was a tough year but it wasn’t anything compared to the following year.
As we are getting older it has become so hard to let go. I wish when i was younger someone would have said to me to let my sister be independent and learn to do more on her own.
Difficulties in High School
A year later, I was a freshman and she was a sophomore and now at the same school. This became the worst year of my life. My sister could not handle the work and the social scene. She would come home angry and would take it out on everyone. Times were difficult and I tried to maintain good grades but it was a challenge. My school work suffered and I became more anxious. I was a straight A student in middle school but I found it hard to stay away from B’s and C’s. My parents thought I could handle this mostly on my own as they had their focus on my sister’s issues rather than mine. I have ADHD and found it extremely challenging to handle the high school workload and my own social changes. As the year went by, the house got increasingly worse – and so did my own mental state. My family was being ripped apart into a million pieces. I started to become an angry person rather than the lighthearted easy going kid I always was. My home situation was becoming so bad I was starting to develop feelings of hatred and anger towards my parents and my sister. It kinda felt like they cared more about her than me. It may sound selfish of me to say that but it was starting to feel like I was more of the conflict mediator than the youngest person in the house. I’m not saying I was the perfect child because I yelled and screamed with them all the time. Living in a home where everyone is screaming at each other can cause you to start yelling and screaming too. But a lot of times I was the calm one. This caused me to mature very quickly. During finals week I needed a break so I stayed with my grandma to focus on the tests. 9th grade was awful.
In the summer before 10th grade for me and 11th for my sister, my parents decided they would put my sister in a special school for similar kids. This was a great change for both of us as her workload and social anxiety decreased resulting in a calmer house. I was able to focus on myself and on my schoolwork, resulting in getting all A’s and a few B’s.
Now you may be thinking: how are things today? Did things change? Is her life perfect and peaceful? Well the answer is no. Life is not easy but things have gotten somewhat better.
Fear and Anxiety
As I mentioned before my sister was very dependent on me. To this day I find myself struggling to let her go and this fear creates a lot of anxiety. I was worried that she would go to school or to a party and make poor choices. I was worried that she would say something stupid on social media and I would have to fix it. But I have to let her go or she will never develop the skills she needs in her own life. And that takes us to where we are now.
I am going to be a junior in a few months and my sister is going to be a senior. She made friends with people who were just like her. They were some of the best things that ever happened to her. I am so thankful for those two friends because they saved my sister’s life. She didn’t have many friends in her freshman and sophomore years. These friends were real and made her time in school enjoyable. She would come home with a smile on her face, something I had not seen in years. Do we still yell and argue? Yes of course we do because we will never be perfect, but it’s been easier to maintain.
As a sibling of someone with Asperger’s, I have learned to accept my sister for who she is. I have learned to accept all the yelling, the crying, the tantrums, and all of the other related stuff because my sister can’t control it. Once you learn to accept that that’s who your sibling is, and that you just have to live with it, your life will become a lot better. Despite having Asperger’s my sister is and always will be my best friend. I love her so much more than she will ever know.
If I could give someone reading this any advice it would be learn to let go. My life has been majorly impacted by my obsession with protecting my sister. As we are getting older it has become so hard to let go. I wish when i was younger someone would have said to me to let my sister be independent and learn to do more on her own. As my sister has gotten older it has become a struggle. When she goes to parties and goes out with her friends without me it makes me nervous. I always think back to those times in middle school where people would make fun of her and use her and she wouldn’t even notice. As an adult people get more cruel and use people a lot more. It scares me that she is going into this big scary world without me by her side. I am slowly starting to let her go. Now when she asks me to do something for her I try to let her figure it out first. If she gets invited to parties and asks me to come with her I say no instead of yes. The number one thing I have had to learn to understand is even people with Asperger’s learn from their mistakes. If I want my sister to learn any life lessons she has to make mistakes and learn from them. It will never be easy to let go of her but I have to. I love her with all my heart, and you know what they say if you love someone set them free. That’s exactly what I need to do.
Brooke Segal is a high school student who happens to have a sister with Asperger’s syndrome. She would love to study the brain when she is older to learn about Asperger’s and other neurodiverse conditions. She hopes to attend the University of Florida, Florida State University, or University of California, Los Angeles.