The Empathy of Autism, Part II

My son’s own words on how he was led to depression, and how he still sees the world as worth while.

In part I, I talked about my 15-year-old Autistic son, Jacob, and our fight to find services that could aid him through depression.  Consistently roadblocked, we both were stunned that we were taught we lacked empathy, when it was clear to us the world around us had no interest in helping us.

I asked Jacob about the origins of his depression.  Here is what he said:

Ever since the beginning of elementary school, there has been 1 teacher, and 2 to 3 people as support staff available to me. Those four people had to be divided up amongst 6 or 7 autistic kids in various classrooms at different times. Even in elementary school, I knew that was bad math – 4 divided by 7 does not come out to an acceptable number when helping kids with disabilities.

Jacob with his therapy cat, Faust, just after a tough day at school.

Because the special education teachers were overburdened, there was never enough help. By 5th grade, no support staff was in the room with me anymore. They would walk by my classroom, stay for a few minutes, and then leave. I really did like the people in the program, but they were stretched way too thin. They didn’t have enough people to support all of the autistic students. I understand I was the “highest functioning” but that doesn’t mean that 10 minutes a day was enough help for me.

Whenever I felt overwhelmed, or that I needed help, I felt I had to cause a disruption in class. I would get built up with anger throughout the day, and then I would just explode. One time I flipped a chair. Another time I kicked a file cabinet. I knew how to ask for help, but when I went to my regular ed teacher to ask for support, they would want me to find words to tell them about what was bothering me. I would struggle, but then when I would finally tell them, I was often dismissed. The regular ed teacher just didn’t understand how big a deal my problems were for a person with autism. No one taught the regular teachers about me.

I remember one time, we were doing an indoor recess. I was the only autistic kid in my class, and my best friend had been separated from me so I wasn’t “distracted.” I was playing a video game with an NT kid in class, and I won. He was upset he lost, so he punched me. It felt like a hard punch and hurt me. At that point, I recalled they had taught us that when we are hit by someone, we are to stand up and declare it to the class. So, I stood up and said to the teacher, “He just punched me in the arm.” The other kid jumps up with a frustrated voice, “No I didn’t.” The teacher immediately looked at me and said, “Jacob, calm down.” I was so confused, I started to panic. I froze and repeatedly said, “Yes he did, he hit me.” The other students gathered around me, watching me, telling me to calm down. I didn’t understand any of it because he hit me and I did what I thought was right, and now I was somehow wrong.

All of the sensory input caused me to breakdown. I ran over to the cabinet door and

Jacob being himself around trusted friends.

kicked and punched it, causing a dent. The teacher pressed the “white button” on the wall which calls the main office, to report kids acting up in class. I was then removed by the discipline principal from the classroom. They never offered to take me to the special ed support staff. I was just in trouble. Eventually, the special ed teacher heard what was happening, and came to get me. It was only then, in her room with the person I trusted, that I could calm down.

This is one example of an incident that seemed to happen over and over again. I would follow the rules, I would get bullied, but then I would end up in trouble. If I ever got frustrated, or my sensory system got overwhelmed, I would be labeled as trouble. I would watch as the NT kids got preferential treatment from the teacher, especially the popular kids. Every time I wasn’t compliant, they assumed it must be because I’m autistic.

One teacher I had would sit me next to the problem kids, because I was quiet. I really was not a fan of this because it was as if I had to be liked by the teacher, or I had to be liked by the kids I was surrounded by. This teacher saw me as a positive influence for the problem kids and sat me with them. One day I was sitting next to this guy who would fidget with his materials all the time. He was spinning a piece of paper on his desk, so the teacher took it from him. The kid looked upset. I was tired of not having friends so I got up, pretended to sharpen my pencil, and grabbed the piece of paper for him. The teacher got mad at me, and the kid was still not my friend. After class, the teacher asked me why I behaved this way. When I told her my reason, she told me I should not be friends with those kinds of students. I was confused. Why sit me next to them and then tell me to not be their friend?

I saw this as flawed logic. Put a good kid next to a bad kid and hope it rubs off? Since it was based on the opinions of the teachers, in one class I was a good kid here to influence bad kids to behave better, and in another class, I was the problem kid. I already had autism, and now I was being thrust into an identity crisis. If I was a different kid in each class, which kid was I? I had no idea how to act. Somedays I would be quiet, and do nothing. Other days I would cause trouble. I wanted to fit in, and the definition of fitting in was to make a friend while acting like one of them.

He had a Thomas shirt for every day of the week.

But I didn’t make any friends. No matter who I was, it wasn’t enough. I was always hopping between two extremes, but none of them were me. I was mirroring others. So to the kids, they thought I was just trying to do whatever the popular thing was, so they excluded me, and bullied me. But when I was myself, before everything got complicated, I was told my interests were not age appropriate. I loved Thomas the Tank Engine, and Transformers. I was told Thomas was too young, and Transformers were too violent to talk about at school. One teacher suggested that Thomas be my “secret obsession.” I was in the 4th grade.

I was supposed to be in school to study academic subjects, but every day was about molding me into the cookie cutter person I was expected to be. Everything that came natural to me was wrong, and no one focused on my strengths. Once I was in middle school, the teachers pushed me harder to perform better academically, but I had not gathered the necessary study skills. I was constantly in social correction mode, and being directed what to do every minute of my day. The academic material wasn’t even interesting, and certainly below my level of learning. School was repetitive, and there was no free thinking. Read, answer questions, write two paragraphs, but be careful not to write your true opinion or you might get a big red “x” on your paper.

I just didn’t fit their expectations, and I wasn’t amenable to shapeshifting.  After a while, I started to hate myself.  This all led me to depression.

On Being Homeschooled

Once I pulled Jacob out of school, he still found it difficult to get through course work.  So I asked him about being taught at home.  Despite the benefits of the home environment, we still were stuck adhering to curriculum developed for neurotypical minds.

Right now, I am being homeschooled and I have no idea how I feel about it. I can look at my life objectively in hindsight, but I can’t create solutions for problems I currently have.

I want to go to college. I know I have to complete high school to get there, but I don’t really want to waste my time with high school. I find it difficult to see the relevance of the topics covered in high school, which seems like tedious busy work. I would just take the GED, but you have to be 18 to take it.

I want to learn new things. I love learning about almost everything in science, but especially astronomy, and technology. Social sciences are pretty interesting too, like psychology and sociology. But I could care less about how a cell divides or what a billion-year-old rock is made of.

I want to live independently. I want a nice place to live but it doesn’t have to be large. I want a job that interests me and utilizes my talents.

I want relationships. Someday, I want to have a life partner, but I have not decided if I want kids yet.

I want to have time for friends and enjoy hobbies with them

I want to be healthy, and live a long life.

I want education to be accessible to everyone, and not just to kids. Everyone, no matter their age or origin or finances or disability should have education accessible to them at every stage of life. People should get to explore their passions without having to worry about what is correct for their demographic category. If a 60-year-old woman likes transformers, that should be ok.

On Depression and Fitting In.

I feel like 10% of my depression is chemical, but about 70% of my depression was caused by the stress from school. The remaining 20% is just normal life struggles that people are supposed to feel.

For one thing, it is not very fun to listen to people tell my mom that my depression is due to laziness, or that my mom wasn’t hard enough on me. The fact that Medicaid isn’t accepted by a vast majority of doctors around me really shows that when people say Autistics don’t have empathy, they haven’t looked at themselves.

At the lowest day of the depression.  He had lost weight & could not get up.

Why should I die from depression just because I am poor?
Why should my depression be any lesser or treated differently, just because you don’t understand my autism?

I am grateful for having my mom to help me. I feel like her trusting me really helps me, but when I show signs of being in a critical state, she doesn’t leave me alone. She has never ignored or diminished my problem. She always took me seriously. Sometimes, it was really annoying when she would try to get me to talk, but sometimes it did help to talk it out. She would just wait in my room until I was ready.

The kids at the school where my mom teaches made me feel accepted and normal, an adjective I can’t usually use to describe myself.

Not saying that they are weird by comparison because that is not what I am trying to imply. It is just that to them, I am not seen as weird, we are equally weird – we are unique.

Conclusions

Despite being misunderstood, Jacob still wants a world where everyone can learn, and explore their passions.  His desires are not too different from most people – family life, a good job, friends, and hobbies – but he carries no bitterness about the world.

As our evening came to a close, I asked Jacob what he really wanted for himself.  If there were no barriers, no rules, no curriculum, no social norms, what would he need to attain the life he wants.  His answer was eloquent, yet simple;

“I need help developing new ways for me to access college. I can get there, but I can’t get there your way. I want to be me, and I want that to be ok.”

Explore a gallery of Jacob’s talents