9 What I Wish My Parents Knew About Being their Autistic daughter

Heidi Wangelin

I feel strongly about things, but I can’t always say it.

BEING AUTISTIC is kind of an unusual thing, especially since I am an Autistic woman who, while growing up, was the only Autistic girl I knew, which was kind of lonely and confusing. I was diagnosed as Autistic when I was six years old at the University of Michigan Ann Arbor, and what I mostly remember about this experience was that I was intensely fixated on peeling the Michigan lighthouse calendar off the wall, amused with watching it fall, and looking at all the pictures. I really liked the colors, especially the blues and whites, and the crashing waves. The graduate student was busily taking notes on a stool and looking a bit annoyed at me because I was still fiddling with the calendar, which would drop down to the seat and slip through the cracks and sometimes land on my head. I knew my mom was getting annoyed, too, and wanted me to stay still. I was never the kid who liked staying still, and that could be a problem. The chair was green-backed and metal, and I was about to fall off. The wall was white and kind of bumpy. Then the student cleared his throat and told my mom I was Autistic. My mom nodded and asked about what it meant. I still was playing with the calendar. I didn’t realize how dramatically my life would change after this ordeal.

For the next several years, I lacked a sense of stability. I was constantly forced into the role of being the new kid with every school change, and it was always hard to adjust. Five consecutive moves are a lot for one person to go through, and it never helped that, as stated earlier, I was the only Autistic girl I knew. I did make friends with each place I moved to, and I still keep in touch with a few of them now, but I still get lonely. I think the worst part of school, especially as someone who moved frequently, was that I often didn’t know where I’d sit at lunch. I really liked to read and made friends easily, but unfortunately most of the time it was with the teachers, since I liked learning. I also used to edit my classmates’ papers during study hall because it was easy for me to have something to correct. I learned how to read everyone’s spelling tests, and it was actually kind of fun for me to play the role of editor. My math work was always terrible, though, and still is.

Sometimes I wish I could tell my parents now what I felt as both a kid and as an adult. Growing up, I tried to write everything. One night I threw parts of my writing into a bonfire pit in a fit of anger because I was frustrated at a friend who had upset me. Watching it burn felt good, but unfortunately, being lonely couldn’t be solved just by burning a piece of paper. Anger is a funny thing, and I was more of a crier anyway. I suppose I felt moving was like that, too— being ripped away from what I knew—but there was no way to say that. I often found it frustrating that I could get along better with a piece of paper or a teacher than with another student. I still have this issue now, and I can revert to this kind of thinking even as an adult.

Water has also been a constant source of both sensory input and comfort, since it felt good to have it splash across my face and legs. If I had my way, I’d always be in water. Water and a piece of paper won’t let you down like people do, and you can always erase the paper somehow. You can’t erase people from your life as easily, and having a photographic and episodic memory makes it even more challenging to forget someone. The memory of a person always comes back to me somehow. Sometimes I didn’t want to erase people, but I just didn’t know how to deal with it. So instead, I’d shut down. It wasn’t like I never tried to be social and make friends; I’ve just never been good at it and settled for what was easy—not because I wanted to, but because I was just tired. When you are tired, sometimes you resort to odd tactics to cope.

Knowing I was the only Autistic girl at school was like having a birthmark or something distinct that everyone could see. Sometimes I liked it, as though it were a cool feature, like my pretty brown eyes. But other times I hated it, kind of like my awkward chest. Looking back, I think most of my hate was just me being frustrated.

Loneliness was the hardest part of growing up, more than any bullying ever was. Looking back now, as I write this in my new apartment with my little desk all messed up and staring out into the tree planter, I think much of my loneliness was self-imposed. I often thought that most people didn’t like me. I knew my parents loved me and that my teachers liked me, but I honestly believed that people my own age disliked me. I also struggled with depression, and even though the medication sometimes helped, I felt like I was losing control of myself, like I didn’t know who I was.

I like to think in pictures and sounds like a camera, so it was like having a rush of feelings and pictures coming straight into my eyes and brain, and I couldn’t find the words to describe it. At times it is like a camera that I can’t control, though. Certain things will set off my camera, and I can’t always process feelings when this happens. It is called being alexithymic, or not being able to say and think your emotions at the same time they are being experienced. This is what always gets me stuck and unable to talk. I know it frustrates my mom when I can’t speak about what I’m feeling or make decisions. It’s just as frustrating for me.

In addition, I feel like I often pick up on others’ feelings with my internal camera. Feelings can be overpowering for me, too, being an empathetic person. I really hate picking up others’ feelings, because they become my own; I can’t block them out even if I try. If someone is hurting, for me it is overpowering; it feels like being stabbed in the gut. Or if someone is happy, I can feel it, too. I can also sense feelings of anger and sadness easily, even other people’s pain. I can’t read body language well, but I can feel things pretty strongly.

The only times that I am able to block out my own feelings is if I’m in survival mode. When that happens, I shut down so much that I can turn off my facial expressions. Unfortunately, that also means that my thoughts get turned off, too. When this happens, it doesn’t always hit me right in the moment, but sometimes much later. I feel strongly about things, but I can’t always say it. And sometimes what looks like a meltdown is really just an expression that I’m upset, but those feelings came out in a meltdown. It’s not always what it looks like. Parents, please be aware that your child may feel this too.

In high school, I also hated that I was always considered “one of the guys” even though I’m a woman. I’m not the most feminine person around, but I’m not all masculine either. I like my blazers and button-downs, old sweaters, and old shirts and jeans. But I have long hair and I also like dresses. I don’t wear makeup often, and until last year I always wore glasses that looked like my dad’s. Autism sometimes feels like an old boys’ club after a while, and it gets frustrating being the only girl around. I don’t have a “male brain,” either—another silly theory. And it sucks having to adjust each outfit to make sure I can be taken seriously.

Each person is different and sometimes people call me not autistic enough or too autistic. Most of these people were autistic themselves, so that makes it seem even more silly to me. There’s no such thing as being too autistic or not. How can we measure someone’s degree of autism? Why would we want to? Parents, don’t fall into the same trap while socializing your child, thinking they’re “too” autistic. Would you measure yourself on what kind or degree of parent you are?

It’s important to constantly push back against sexism and ableism. Because this starts when we are very young, many of us grow up thinking that is normal or acceptable. This is a horrible lie that we’ve been told, and it needs to stop. Part of why I liked having a joint major in Disability Studies is because it allowed me a place to discuss this kind of thing. I guess you can call it one of my obsessions. It isn’t the most popular obsession out there, though, since it can really make people angry to be called out on disability issues and since I get lots of confused looks from others.

Neurodiversity, the belief that all brains are needed and can be beautiful, is something I wish I had learned about sooner. It isn’t any different than biodiversity—the variance of life—except that it has to do with brains. Parents, tell your child that their brain is beautiful. From being around neurotypicals, I have spent most of my life thinking that I wasn’t enough. I felt that I had to aspire to be a neurotypical most of my life. That attitude was wrong, and I was only harming myself.

Tell your children they are wanted. Often, we Autistics are shown that we aren’t wanted. We need each other, both neurotypicals and Autistics. I know that it can be scary to embrace being Autistic or that your child is autistic. Take time to process, but don’t grieve. Grief is like wishing your child away.

If I had an opportunity to talk to younger me (little Heidi), I would reassure her that she is going to be just fine. She’s not broken, just different—a good kind of different. Do you have a little Heidi in your life? She needs you. She wants you to know how it feels, and please don’t judge her. What are you most proud of about her? What is she most proud of?

Tell little Heidi that she is beautiful, just like you. Respect her autonomy. She’s a person. She’s not a thing or less than human. She is like you somehow. Too often, people with disabilities in general are treated as less than people. Let her get involved in her passions and be part of the disability rights movement if she is inclined to that kind of passion. We need more representatives who are autistic. We need you and her. We need you to understand us. Accept us as people. She may have a different way of showing what she feels and needs, but it is important. I am blessed to have mostly understanding parents, but not everyone is as lucky or privileged as I am.

Tell her that she’s not alone, that there are more people just like her. I think the biggest issue for me was feeling alone. I didn’t meet any women my age who were Autistic and proud of it until my sophomore year of college. I think if I’d had more Autistic female role models, that would have helped me a lot. I’m excited every time I am able to mentor others, especially young people. I have a chance to be the role model that I never had. I can help people—like your child!—to embrace who they are, know they matter, know they’re not alone. I hope this helps you understand.