My Life with Undiagnosed Autism: School Years

My story starts when I am two and my Father comes home from work and puts on his records. I love to bounce to the rhythm of the music. He loves music too and we laugh as I bounce in my bouncy chair. One day he came home and put the music on when I was not in my chair. I stood up and this surprised him as I had not yet learned to walk. He called me over and I teetered over to him. I took my first steps through my fascination with sound. It sprung me forth with joy. At some point, around age three or four, I learn the words,  “born in the USA” from a song by Bruce Springsteen. I sing it over and over and over. My parents take me to a Bruce Springsteen Concert.

I am 3 and I am alone outside building a snowman. I am wearing pink mittens and watching the way my little mitts move in the lightly falling snow. I am mesmerized with the way it floats through the air and I watch as the little flakes gather on my gloves. The same thing happens when I am laying in bed and I watch the dust particles playing in the light. I am happy and could just stare at it forever. The world is beautiful and I am in awe.

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I am 4 and my Mom and Dad get a divorce. No one explains to me why. My mother tells me he is on a business trip. I ask for him endlessly. I draw pictures of sad faces. I start not being able to sleep. I am put in pre-school so my mother can work. It is nap time and all the other kids are sleeping. I cannot sit still. I keep tossing and turning and playing with my hands. An adult at the pre-school comes over and grabs me by one leg and one arm and violently flips me up into the air and slams me onto the cot I was laying on. I am so afraid I do not move and stare blankly in the wall in terror.

I am 5 and they tell my mother I am too stunted to start first grade. They hold me back and keep me in pre-school.

I am 6 and just started first grade. I am so sick and I throw up in the hall. My Mom says I am big enough to walk to school. I pick flowers for my teacher. In the playground I do not play with the other kids. I only have one friend. She tells me that a boy in school was mean to her and that I should make him pay. So, I walk up to him and scratch him from his elbow to his wrist. All the adults are very very angry with me. I do not understand. I am sent to the principles office. I thought I was protecting my friend. I am told that I need to keep my hands to myself and keep my nails short. I start biting my nails. I don’t say anything because I couldn’t.

None of the kids will play with me during recess. I keep to myself and swing on the swing over and over and over. When I get board with that I flip myself around on the jungle gym bars. I don’t remember any children ever talking to me. Once on the jungle gym a little boy walks up to me and spits in my face. It is not the same boy I scratched. I don’t understand why he did this except that I think I was using the bars for too long. I also loved hula hooping and jump rope.

I am in the second grade. I say amen after the pledge of allegiance because I thought we were praying like in church. All the kids laugh at me.

My Mom puts me in piano lessons. I can play everything I hear. The teacher thinks I play well. I love to play the piano. My Mom also puts me in swimming. I sit at the bottom of the pool and hold my breath. It is so peaceful down there. I pretend I am a mermaid and swim for hours until my hands and feet shrivel up. I love every minute of it.

I am in the third grade. It is Valentine’s Day. Every student in the room has a bag of candy. We are told that we get to put some candy in each students bag. I see that some kids have candy that I prefer over others. I take the candy and replace it with ones I have that I don’t like. I do this while all the other kids are out to recess. When the children return they notice something is wrong with their bags. The teacher asks to look in every students bag to see who moved the candy. She finds it in my bag. The whole class watches her discovery. There was silence and accusations. They tell me I stole. I am called a thief and they ask me what is wrong with me. I couldn’t say as I don’t understand why what I did wrong and couldn’t find my words. I am no longer allowed to be by myself in school. The teacher requires that I am never again allowed to be alone in the room. That day in recess kids take turns running up to me and calling me names. “There must be something terribly wrong with me,” I think.

I can’t sit still in the gymnasium. The teacher tells me to sit still over and over and over. I keep bouncing a ball against the wall while there was some sort of presentation. The teacher keeps telling me to sit still. I can’t. She tells the principle and he comes over and grabs my hand hard, crushing my fingers, and asks me why my parents named me Angel. He says Devil would have been more appropriate. I don’t say anything because I can’t. Teachers kept telling me this about my name. I learn that I am bad.

My parents take me to Disneyland. They are remarried. I don’t understand. All the sounds and everything at Disneyland causes me great fear and I run away. I lose my parents and I run right into a strange man. I am frozen with fear. My Dad finds me.

I am in the fourth grade. A neighborhood boy brings matches over where we were playing in the street. He starts lighting things on fire. He tells me it’s fun to play with fire. I go home with matches and light one in my room. My mother smells it and pushes me down to the ground and screams at me. I don’t remember what she said. I hid in the closet for the rest of the night. I did not play with the neighborhood kids again. I spent a lot of time hiding in cupboards. In the fourth grade I started a new school. There was a boy more disruptive than I was in class. I watched how everyone treated him. They called him names. I learned by watching him how not to behave. He also became one of my friends.

I am in the fifth grade I am in a new school. My parents divorce again. I don’t understand. In class I am very happily talking about the Lion King to my new friend Jana. We became friends in Band, where I also start learning how to play the trumpet. We were in regular class and the teacher keeps yelling at me to be quiet. So, I lowered my voice and keep talking about the Lion King and singing all the songs, quietly. She leapt from where she was standing and ran at me. I am afraid. She grabs me by the arm and all of her fingernails cut into my arm. She drags me out side and screams at me in the hall for what feels like 10 minutes. I don’t say anything because I can’t. After this kids start treating me differently again. I start playing at recess alone. I find a bush in the playground that is hollow on the inside. I bring play mats into the bush and play all alone. Luckily, I did make two friends and they play with me. Although looking back they did tell me to eat ants. And I did. They taste like pepper.

A boy in school found a dead possum baby and chases me with it on the end of a stick. I demand to know where he got it. He killed it when he found a nest of more of them. I am horrified and run over to the nest. I watch the babies and cry. They are so helpless. They are all pink and scared. I cover them up to protect them. The kids at school start calling me a freak. I’m not sure why. No one, but my two friends, will play with me and they try to hit me with the tether ball if I do play. The other kids make fun of my friends too. We start ditching school and sneaking out through the fence. At least we have each other.

A little boy starts taunting me so I throw a spiky tree ball at him. He calls me a bitch. The teacher takes us to the principle and he calls me a bitch again. This got him suspended. All of his friends blame me. His friend, who is a girl, cuts me in the lunch line and I say what she did is wrong so she grabs onto my hair and pulls it, hard. I pull hers back. She stops.

I am in the sixth grade. One of these girls pretends to befriend me to teach me how to be “cool” she tells me to start cursing. I believe this will help people like me. They all laugh. They start threatening to beat me up. I tell the principle. He calls them into his office. They all must have said some pretty awful things because the principle came to me afterwards and told me if I ever did “it” again I would be suspended. I am not sure what he was talking about. I don’t say anything because, well, I can’t. This same year my high school counselor tells me I am maturing by commenting, “Wow, Angel, you’re getting hips.” I learn adults are not safe. I learn asking for help does not bring help. My bullies start calling me freak everyday. They pour water on my head. They slam me into lockers. They rip necklaces off of my neck. I watch the beads scatter across the floor. It was a Native American necklace my Dad got me on a road trip through the desert. It was supposed to be for protection. I can’t find my words. I just stare. When my Dad and I go on road trips I feel safe and loved. We sing songs. We ride his 1956 Ford down route 66 and the hills in the road feel like a rollercoaster.  I wave my hand through the wind and feel it on my face. It is lovely. All of the cactuses and sunrises are so beautiful. I find horses while I am in the desert and ride them. (I know all of the types of horses and how to care for them until the vet comes from reading books.) We go camping and I find scorpions and close my eyes and listen to the sand blowing in the wind. I get a telescope and find all the planets in the galaxy using a star chart.

I am in the seventh grade. I get my period. I don’t understand. The pad squishes in my pants and makes noise every time I walk. I think everyone can hear this. The pad smells too. I think everyone can smell this. It was disgusting. “I’m disgusting,”  I thought. I start hiding on my period and feeling ashamed. I need a bra and tell my Mom. She tells me only whores wear bras. I do not understand. She wears a bra. My Dad yells at me when he sees I don’t have one. He takes me to get them. They hurt and I hate them. My body has betrayed me.

 

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I am in the eighth grade. I dye my hair in the school bathroom. I don’t raise my hand in class. I blurt out answers and keep doing it even when I am told not to. I don’t understand. I had the right answer. I am sent to the principles office almost everyday. I learn being smart will get you ridiculed and punished. I stop trying to answer questions and just read from the book. I stop listening to the teacher. I start poking my hand with a safety pin in class. No one notices. I stop eating lunch with the other kids so they won’t make fun of me. I search for change under the vending machines to try and get food. I ask friends for food when they are away from the cafeteria. I do not have homemade meals because we cannot afford them. And my Mom (who I think was Autistic) did not know how to cook. I keep my hair funny colors. I do this because the other kids keep calling me freak and it makes me happy to have funny colored hair. I make friends with other interesting and unusual friends. One of them has an elective in the year book. I was voted Most Unique. I feel a little honored and extra special. This was a rare feeling.

I am in the ninth grade. All of my friends start doing drugs. I think this will help me fit in. I don’t think anyone likes me. I try to smoke pot before school with them. It makes me afraid. I try to hang out with other kids but I don’t talk. I don’t want them to think I am weird. I sing to myself in the halls because I like how it sounds off of the lockers. I also start clucking like a chicken because I like the sound and I think it’s funny. My bullies keep calling me freak and now another horrible F word, but it matters less because I have found some other unique friends. We start ditching school together. I have to spend a lot of time in the office. I come to school crying everyday. My mother never got me to school on time. I have a very hard time waking up and getting it together in the morning. So does my Mom. The school staff think it’s my fault and punish me. I am met with scorn first thing every morning.

I am in the tenth grade. I start playing trumpet in band outside of school. It is all boys and they like playing video games like I do. I am first chair trumpet in the band. I am happy. I keep failing math and they have to keep me back. I feel stupid.

I am in the eleventh grade. I started another new school. I had to leave my band and my strange friends. I am the new kid again. I don’t look anyone in the eye. I keep to myself. I roller skate to school because I love roller skating. Then a movie comes out about the porn industry and one of the characters wears roller skates. All the kids start calling me “roller girl.” I don’t understand. I fail chemistry. I stop going to class. My counselor tells me, “My good looks will only get me in the door.” I have no idea what he is talking about and just stare at the floor. I do not respond verbally. Kids start picking on me again. I am drawing in class and not paying attention and one of the kids draws on my pencil drawing with a pen. He ruins a piece of art I spent months creating. I just look at him and he laughs. One of the boys in school notices I am being bullied. He sees me crying and starts giving me hugs. I am grateful as these are the only hugs I have. I break out in sores on my face. The school nurse tells me I am malnourished. We don’t have a fridge at home. My Autistic Mom did not know how to be a Mom. I am not allowed to leave the house. I do make two very close friends in school and for that I am grateful. They sneak over to my house to see me now and then while my Mom is at work. My Mom and I have no furniture and my friends and I play with oranges we call it “orange bowling.”

I am in the twelfth grade. I start a new school again. My mother never returns for summer break to pick me up. My Dad and I wait for a month after school starts. I start the new school late. I switch to skateboarding after being called roller girl and make some friends who skate. They also play music. They are strange like me and we like the same bands. I feel more confident. I find a best friend. I am grateful. We have similar stories and Mothers. We start a band. It is an almost all Mexican student body. I overhear one of the kids talking poorly about me in Spanish. Luckily, I excelled at Spanish and tell them I understand everything they are saying, in perfect Spanish. They are shocked and become my friends. They ask me for help with math. Suddenly it is good to be smart again.

I start speaking out of turn to my English teacher when she gets the information wrong. She makes me spend all of class time in the hall by myself. I take psychology. We have a hypnotist come in. He tries to hypnotize the class. I am looking down at my desk and tears start falling out of my eyes. I bolt out of class. Luckily the teacher notices and follows me out. He sits with me in silence in the hall and brings me a chair and just lets me cry. He tells my counselor who is kind and empathetic. It is the first time I feel safe with an adult besides my Dad and Grandparents. I am doing very poorly in school and have 64 absences. The counselor lets me drop out into independent study where I complete all of my senior assignments three months early. I graduate before everyone else.

I have a lot of meltdowns. I cannot clean my room. My Dad doesn’t understand. His new wife is harsh and she doesn’t understand why I can’t do basic things such as dishes. My Mom never had dishes. We always ate out. She and my step sister grow to greatly dislike me. My stepsister glares at me. She bursts into my room to tell me to stop singing. I start sneaking out my window. I start cutting myself.

I meet a boy who is older than me. I lose my housing. My Dad helps me get a car, but now I am living in it. I drink too much with this new boy and couldn’t drive home. I had never had alcohol. My Dad told me he would blow my car up and I believed him. I didn’t go home again.

I am in college. I am living in the parking lot. I start getting bad grades. I have no friends. I drop out of college. I start smoking. I don’t eat very much. I am starting to have more and more meltdowns. They diagnose me with Manic Depressiveness and PTSD.

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I’m 22.
I cannot even begin to imagine how differently my life might have been had I the support I needed early. If I had a proper diagnosis as a small girl I may have understood my sensory issues. I may have had help in class. I may have been gently supported through meltdowns. Maybe people would have been more patient. I cannot ever know that. But I do know about my Autism now. I understand why I lose my words, it’s called selective mutism. I understand what sensory issues are and how too many of them can overwhelm me and cause meltdowns. I realized panic attacks are not the same as sensory meltdowns. I understand my slower processing speed and racing thoughts. I understand shutdowns, audio processing disorder,  and echolalia. I understand my hyper-focusing and special interests. I understand my Ulcerative Colitis and how important diet is. I have sensory toys, a weighted blanket, ear muffs, ear plugs,  and can sleep again. I understand why it’s so hard for me at the grocery store, in crowds, loud places, and concerts because of my sensory issues. It’s also hard for me to drive at night because of bright lights. There’s so much more I am still learning. I understand what it is to be me, finally. I understand that there is nothing “wrong” with me at all. I’m just different.

I am proudly autistic and I share my story so that other Autistic kids, especially girls, know that they are not alone. I was not diagnosed with Autism until the age of 35. I have been bullied my whole life and I have never understood why. I thought I was broken. Now I understand myself. I prevent meltdowns by having down time and eating well. I explain to people how I struggle and I only make friends with people who love me for who I am, different but not broken. My brain is extraordinary and unique. I have found love and understanding for myself again.

This is me now.

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This was inspired by this video:

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