Editor’s note: This is the first of a two-part series by Carla, the sister of a twin brother disabled by severe and profound autism. Many family members endure acute trauma that leaves permanent scars, both mental and physical. We know Carla’s experience is not uncommon in the privacy of autism homes around the U.S. and we thank her for her willingness to share.
By Carla S.
“Carla, I just don’t understand why you are so anxious,” my mom tells me often.
A couple of years ago I had a mental health crisis, although nobody could have ever guessed. I was an overachieving student who had dived into the world of neurobiology, hoping to one day find the cure for my brother who experienced severe autism spectrum disorder.
However, I found myself at the mercy of all these intrusive thoughts. Intrusive thoughts that amplified any memories into the worst-case scenario. I convinced myself I was a terrible person, and every day I lived with extreme guilt. I was fortunate to start therapy, and as I unpacked it. I recognized; these intrusive thoughts were not new but came from a pattern I experienced in my childhood.
Growing up with a twin brother with severe autism can only be described as hard. I can remember feeling like I needed to help my parents with my brother as he was often unpredictable. I have memories of him having outbursts that often resulted in self harm. I also remember having to cater more to him, to understand his every need and triggers. To be constantly on edge about what can set him off, or where is he now.
This was hard to watch because you do not ever want to see your brother hurt himself. You also never want to see your parents dumbfounded and struggling to help your brother. Not only that but during a time where you really need your parent’s affection, they struggled to offer it. Often, I felt like I could not bother them with my issues, because everyone was so wound up. I remember my parents releasing their stress through yelling at me or crying and asking for support themselves. I remember distinctly minimizing my issues because my parents were already going through so much. I felt especially like my problems were not real because nobody else seemed to understand what I was going through.
When my brother and I reached our teenage years, things remained stressful. Puberty made Tim’s behavior more erratic, and his size made him even more scary. Where before I worried about him breaking down, I soon worried about him breaking us. And I was afraid. I remember I was the one who pushed for more medication, and on this medication he gained a lot of weight, and it did not fully fix his issues. And it made him even more physically daunting, which really scared me.
As a teenager, I felt so out of control I threw myself into work and fitness. During this time, I struggled a lot with food. Sometimes I would eat too little, sometimes I would eat too much, and I would weigh myself incessantly. I threw myself into schoolwork, too, and put hours and hours into academics. I had a food plan and a rigid study schedule, and I lived either inside my bedroom or outside the house. However, I was hardly in the common areas, because the common areas of my house were too chaotic. You could have been talking too loudly, and you would have an iPad thrown at your head.
I especially would avoid cars with my brother, and I still do. I remember my mom wanted me to learn how to drive so I could give my brother rides around the neighborhood because that is what he loved. However, I had witnessed my brother trying to kick my mom’s head while she drove him around. I am still too scared to ride in the same car as him. The thought of him attacking us in such a small space is too much for me to deal with.
When I went away to college, I realized what I had been missing out on. I almost struggled to adjust. Any sudden loud noises from my roommates would put me on edge. I loved the freedom of leaving the house whenever I wanted. I loved the freedom of not having to constantly think of someone else’s needs above my own. However, college was cut short for me because of COVID-19, and I had to move back home. Moving back was really bad, because my mom took Tim off his medication, and he was more violent than he had ever been.
It is hard to have to step in between your 120-pound mother and a 300-pound autistic man. While at other times being so scared to help intervene and hiding in the corner and feeling like a complete failure while watching your aging dad be bit and hit. My dad was left with holes in his shirts, and every time he wears his shirts, I am left reminded of feeling guilty that I could not protect my parents.
I remember the situations where I felt I absolutely had enough. Tim attacked his pregnant ABA therapist, and when he was biting her, I jumped in between to get him off her. In addition, I also had taken finals while my brother was screaming and fighting with my parents. During the nighttime, I had to keep my bedroom door locked as he was attacking during the middle of night. I felt unsafe and scared, and had to move out as a result.
When I left my parents, I had never felt so guilty, that they had to be confined to this home where neither could get a break, and nobody could help them —while I got to feel relief.
All of this leads me back to today. The volatility of the environment I grew up in permanently altered my brain. I am always anxious about what could happen, always trying to seek control when I do not have any, always catering to other people, and always experiencing guilt. I am still learning to live with my brain, and the trauma I faced. I struggle to deal with my anxiety and mental health, and it grows exhausting. It is harder because the world does not seem to understand, nor care, that autism affects more than my brother. Autism has had a severe impact on how I grew up, and the mental health issues I will have to face for the rest of my life.
Carla S. is the pseudonym of a young woman with a twin brother with severe and profound autism. She grew up in northern California. This is the first in a two-part series.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.