5 What I Wish You Knew

Katie Levin

I wish my parents knew that when I was refusing to do something, it was often because I was overwhelmed and wasn’t given the right kind of support.

JUST BECAUSE I MAY BE well-behaved, quiet, and getting good grades at school doesn’t mean that school is going well, or that I am not experiencing problems, or that I am happy.

I was smart, got good grades, and mostly tested well, but I was often afraid to ask questions in class. The worst thing was when the teacher asked us to “pick a partner” or a group, where everyone just usually paired up with someone right away. Since I was too afraid to ask anyone (and no one ever asked me), I was almost always one of the leftovers. That meant I was the kid who didn’t have a partner and got thrown with whichever other kid didn’t have a partner or thrown in someone’s group of the teacher’s choosing as an extra person. I was too scared to call most kids on the phone or walk with anyone. When I was in junior high and I took the bus to school, I waited alone at the bus stop because I was too scared to ask anyone if I could wait with them.

I needed the support of a special education environment, but not the remedial level work. I often mainstreamed out of special education because I was too smart. It wasn’t fair that smart kids couldn’t get the extra support of a special education environment, and when I was mainstreamed into harder classes, I often had a hard time keeping up with the work. Plus, special education kids are judged by other kids. It was either/or:harder work with not enough support, or more support with work that was too easy. I couldn’t have both the work at the level that was right for me and the extra support I needed.

I hated gym class more than anything. I was uncoordinated, not very fast or strong, and afraid of balls coming toward me. The teacher never offered to help me learn whatever we were doing or improve any skills, or even showed encouragement or support. The other kids never wanted me to be on their team (I was always picked last, again a “leftover”). They just ignored me or yelled at me whenever I was stuck on someone’s team because I never did well. I hated that I was forced to participate against my will. I sometimes wore the wrong shoes on purpose so I could sit out and not play in elementary school.

For similar reasons, I didn’t often enjoy recess. I would walk around by myself or play on the swings alone unless someone offered to play with me (which usually didn’t happen). Most kids ignored me, but some teased me and bullied me. I almost always started to cry whenever that happened, and that just overwhelmed me even worse than their teasing.

I got overwhelmed in large groups. I got invited to a few birthday parties, but not many. I never had more than four people come to any of my birthday parties. Many times I had only two or three.

What was worse was that even when my parents fought to give me more support (special classroom, special school and resources), the school system usually voted against it. It wasn’t until the end of my freshman year of high school, after being hospitalized twice in eighteen months, that the school finally pulled me from mainstream placement and placed me in special education. There were two problems with this. One was that all the work was remedial level and too easy for me, and the second was that I was placed in the behavior disorder or BD class with all the kids who were suspended regularly and usually dropped out of school before graduating. I was the kid who was naive, smart, never got a detention in my life, and was afraid of just about everyone. So, I was placed with a bunch of bullies.

I wish my parents knew that when I was “refusing” to do something, it was often because I was overwhelmed and wasn’t given the right kind of support, especially when it came to chores. It was also difficult to be around a bunch of people, and in asking if we could go to a different (quieter) restaurant, or turn off certain noises, or not give Grandma a kiss and a hug all the time, I wasn’t trying to be rude. These were sensory issues. My parents often told me I needed to learn to “get over it,” and if I didn’t, I’d never be able to function in life, college, on the job, with a boyfriend, etc.

I wish I could have grown up in an environment where I wasn’t constantly treated like I was broken. I felt like I wasn’t okay unless I learned to act like everyone else. I realized later on that my mom sent me to therapists partly thinking that they would instruct me in doing whatever my mom said. After all, my parents were the ones paying the therapist.

I also want today’s parents to know that I noticed the examples of others’ actions more than their yelling or punishments. If you tell me to clean up, even though your room and other parts of the house are a mess, it’s not going to help me to learn the skill. If you’re telling me to do something just because you told me so (and if I don’t, I’ll be punished), I will grow up to resent wanting to help you with anything. And in many ways that is what happened.

Kids need to learn living skills while still young, even if they need help: how to do the laundry, how to wash the dishes, how to make a bed, how to cook, how to answer a phone, how to use public transportation, and—when they’re old enough—how to drive. They might need your help and support, maybe multiple times. They need you to be patient. Don’t yell if they do something wrong, even if they do it wrong one hundred times.

Girls can show autism differently than boys do. Girls may not act out as much. They might be more verbal. We are often taught not to be as physical, but to be more social. We might not have the more common autistic interests like video games or trains. We are judged more on our social skills and our looks. We often learn to suppress anything that is out of the ordinary, like unusual special interests or stimming or unusual habits.

It’s okay to get a diagnosis. Getting a diagnosis doesn’t define you or your child. You and your child choose what they want to do with it. It might help them get certain accommodations such as extended test times at college or government benefits. But it’s not always relevant. And once your child is diagnosed, they can learn more about autism, and why they shouldn’t feel like they are broken and how to navigate the world around them, even if their mind works differently.

Three things:

• Your child loves you even if they don’t always show it.

• Make sure your child’s special talents are recognized and encouraged.

• Teach your child to learn to use their strengths to compensate for their so-called deficits or struggles.

If at all possible, try to limit the amount of homework your child gets. Being in school for seven hours a day is mentally exhausting. That includes recess and lunch. Being in school is all about following rules and acting appropriately. We have to constantly remember all these rules. School is all about acting like everyone else. We often have to put on a persona that is outside of our comfort zone. And we usually can’t take breaks when we want. When we get home, we need a chance to get away from that. We can’t be expected to act this way 24/7. If we are, we are more likely to become overwhelmed faster, shut down more frequently, act out in destructive ways, become physically ill more often, become depressed, and avoid social situations.

Let us stim, especially at home. It might seem awkward to do this at school, especially since other kids will often judge it. If it’s not destructive and it isn’t harmful, let us get it out of our system. If the behaviors are bothersome to others, show your child where they can do this in private or leave the room for a while to allow your child to do this.

Being happy is not the same as being normal. We just want to be accepted.