Disclaimer: I love my brother very much. None of this is meant to be taken as me wishing him away. I’m one of his biggest advocates, which also lead me to my calling as a special education teacher. This post is also not intended for the reader to have a horrible picture of autism, or to think I believe autism is a horrible disability. This post is intended for the reader to understand the raw emotions and feelings of a sibling with autism. Other siblings, if you are reading this, I hope this post comforts you. I hope you find peace. You are not alone.
When most people hear the word “autism” they think of a quirky little boy with savant skills (think Rain Man). Most movies portray autism as a young person who does not fit in but has charming characteristics that attract others to them. Those “others” usually consist of at least one person who recognizes their talent, helps them become famous (at least at the local level), and boom, they’re accepted and everyone lives happily ever after.
This is not the autism I experience.
My brother, Mark, was diagnosed with autism at age two. I was five, but I still remember bits and pieces of the devastation it caused. While most babies were learning to walk and talk at that time, Mark would repeat the few words he knew over and over while flapping his hands in front of his face (this is called stimming). Our close family friend had a son that was the same age as Mark, and I remember how it killed my parents to see my cousin reaching the developmental milestones while my brother seemed to be in his own little world.
Mark learned to speak a few months later, which seemed to be a relief to my parents. At least they weren’t going to have that kid with autism. You know, the one that never spoke and was trapped in a life of silence and stims forever. Mark became verbal, got along with me and the neighborhood children as we grew older, and even began to play with us. Everything seemed to be going great, especially considering he had an autism label.
Mark enrolled in our local school when he was 6 years old. Our school did not have an autistic support room, a sensory room, and had never had a child without a severe physical disability that required a “helper”. I remember my parents’ concern as they sent Mark to school, thinking they were not prepared for a child like him. Thankfully, their fears were dispelled. Mark’s learning support teacher was terrific, a teacher that was one of my heroes and who I model my own teaching methods after. His TSS was probably the greatest thing that ever happened to my family, and she was with us for 15 years. He had a Lunch Bunch, in which he learned to interact with his neurotypical peers, and they with him. His teachers were all eager to accommodate his needs and did everything they could to help him be successful in the classroom, but hold him to high standards in the process. He was not given good grades, but through their guidance, my mother’s diligence, and his efforts, he remained mainstreamed for the majority of his classes. He was popular all throughout school, receiving the “friendliest” award his senior year in the yearbook. Who would have ever thought that a boy with autism, which is a disability that affects socialization, would win such an honor? At home, Mark worked hard on his homework, played with my sister and me, and was loved and adored by all of our family. Everything seemed to be going well for him. His life was the movie, where his charming quirks made people like him. Everything was going to be okay.
There was an ugly side of Mark at home that our parents ignored for a really long time. Mark would become angry for no apparent reason and hit my little sister and me. My parents brushed it aside, thinking it was what “normal” siblings did. After all, they had both grown up with rough and tumble older siblings, and they would roughhouse and get out of control sometimes. So I continued to try to protect my sister, while my parents continued to pretend it wasn’t happening.
After his graduation, Mark started becoming irritable. His stims, which used to consist of jumping around while flapping his hands in front of his face, turned into biting his tongue and hands so hard that he would bleed, pinching and biting my parents, and screaming at the top of his lungs. His pinching and biting my parents escalated to punching, kicking, smacking, and scratching. During a family dinner outing, he became irritable, and my dad tried to take him home so he could unwind. In the driveway, Mark blindsided my dad, tackled him to the ground, began choking him and slammed his head into the driveway. Luckily, my dad was able to escape and call for help. By the time we had gotten home, my dad was covered in blood. Mark was on the floor crying about what he had done to my dad. My parents had many sleepless nights but determined that it was a fluke, a freak accident, and because of his tearful apologies, it would not happen again.
It would happen again.
Since then, my parents have been bitten, punched, kicked, and choked. They have had heavy objects, including rocks, hammers, chairs, and knives, thrown at them. Since then, my brother has taken to exposing himself in our home and has done it in public on a few occasions. My dad has taken him on ATV rides and has come home to tell us that Mark grabbed him by the neck and threw him off of the quad. Mark has grabbed my mom’s wrists while she has been driving, almost causing accidents. My sister and I have both hidden behind locked doors as our brother flung all of his body weight into the door to break it down, butcher knife in hand. Medications were not working, social skills groups were not working, prayers weren’t working.
In the spring of this year, I finally cracked. After hiding in my bedroom and listening to my brother trying to break my parents’ door down, I called Crisis Intervention. They gave two recommendations: we either take Mark to the emergency room ourselves to have him psychologically evaluated and committed, or we call the police if things got worse. I texted my parents from my room and told them they had two options. They would either cooperate with me and help me take him to the hospital, or I was calling the police. After texts back and forth, being told that they would disown me if I did anything of the sort, and many tears, we loaded Mark into the back of the car and drove to the ER. During that time, he spat at me, scratched my parents, and screamed every hateful phrase he could think of at me.
Long story short, after many hours of trying to get Mark to cooperate, he finally agreed to stay in the psychiatric unit. While there, his medicine was closely monitored, and he received therapy to help him to learn replacement behaviors for his out of control ones. Mark was in the hospital for two months before the hospital said they had done all they could do for him, so they sent him home.
Within hours of returning home, Mark went back to his same old behaviors. With his pants off and scissors in hand, he chased me into my room, threatening to cut my throat. Again, I gave my parents the ultimatum of hospital or police intervention. Mark was not home for more than 24 hours before returning for psychological evaluation, where he would stay for two more months.
While Mark was in the hospital, I noticed a change in my parents, especially my mother. These people, who walked on eggshells and were always on edge constantly, were laughing. They were going on dates, seeing friends for dinner, and simply sitting on the couch again without jumping at every creak of the floorboards. I started to plant the idea in their head that life would be better for all of us if Mark were to move to a group home.
At first, the idea seemed too much to bear. My mother cried, accusing me of saying she had failed as a parent. My father was terrified from all of the horror stories on the internet that he had read about people being abused in these homes. But my parents began enjoying their life of freedom, and they also noticed that Mark was changing as well. In the hospital, Mark was happy. There was an extremely structured schedule, rigid expectations, and immediate consequences for his actions. This may sound like prison, but for a person with autism, this is like heaven. Mark knew exactly what was going on at all hours of the day, and he was aware of exactly what behaviors were expected of him and what would happen if he did not abide by the rules. This was the exact opposite of my house, where there was no routine, and the expectations and consequences were not black and white. I’m not saying my parents were bad parents, but they let my brother get away with murder. Almost literally.
So after many months of planning and calls to an attorney, Mark moved into the group home, where he currently lives happily with two of his best friends, who also have disabilities Mark is currently learning to cook for himself, has chores, and the plans are in the making to get him involved with a job coach and a career at a local grocery store. My parents are living their life. My mom is helping me to plan the wedding of my dreams, my dad is getting back to his hobbies of hunting and fishing, and my sister is not afraid to come home anymore.
I love my brother very much. I love stopping by his house every once in awhile on the way home from work with his favorite cookies from a local restaurant. I love that he chatters to me about the people he meets. I love that he teases me about my fiance kissing me and how gross we are. But what I love most is that we went through absolute hell to get him where he is, but now he is happy and is living a fulfilling life, and so are we.