It Turns Out, I Wasn’t A Bad Kid

This story is sponsored by Chas Swedberg. I am grateful for his generous support of The Orbit through our Kickstarter campaign.

Until my 30’s I didn’t know I was autistic. Like many autistic adults I was not diagnosed as a kid because the criteria for diagnosis, and the cultural expectations around autism, meant that no one could put the correct name to who I am. I was perceived as an intelligent and highly verbal little girl – not at all what teachers, therapists, and my parents thought of when they heard the word “autism.”

Without correct language to describe me a lot of other labels were put onto me instead. I struggled enormously socially, and since I was awkward and weird the blame for the bullying I received was put on me. As I entered middle school I was seriously socially delayed and tried everything I could think of to make or keep friends.

Assuming people didn’t like me because I wasn’t interesting enough, I lied dramatically in an attempt to seem interesting. Unsurprisingly, the stories I created didn’t actually work to attract friends, but they did manage to harm my family, and eventually caused my social situation in school to become so bad that my parents switched my school to another.

These lies were a big deal, and broke down trust between myself and my parents completely. I was already struggling with emotional development, academic achievement, and pretty much every other facet of my life. The destruction of any trust in my family lead to many years of fighting, struggle, and broken relationships. In my own mind, and in the ways in which my parents and every institution around me responded, I was a Bad Kid.

Being a Bad Kid is incredibly hard to recover from. Everyone around you sees you through that lens. Once a kid is seen as “troubled” or “delinquent” or anything similar it is almost impossible to get back to being normal, or having anyone see you as a success. This view of me, by myself and others, eventually lead to me being institutionalized, and then eventually kicked out of that institution as I approached my 18th birthday.

Only in my early 30’s did what happened during those years become clear to me. As soon as the word “autism” was applied to me I began to see the whole experience in a new light.

I was not a bad kid. I was an autistic kid in a system that could not recognize me as such, and did not support me in any of the ways I needed to be supported. In place of accommodations and understanding I was given blame.

It wasn’t my fault.

My relationship with my parents is quite good now. In part this is because we worked hard to repair things between us in my 20’s, but a large part of it is also that we now have the language to talk about how things were when I was a kid. Finding the language to describe my difficulties was nearly as healing for my mother as it was for me. As I learned that my failures were not my fault, she also learned that they were mostly not hers either.

I try to remember this when dealing with other people. I know now that bad information at a critical stage can lead to a cascade of impacts that seriously harm someone’s life. It’s not always easy to avoid assuming the worst about someone who does something harmful, like telling elaborate lies that hurt those around them, but I try.

It Turns Out, I Wasn’t A Bad Kid

Chaos and Volume: My Autistic Ears

Noise is really hard for me to deal with. Of all sensory input, hearing is definitely the one I struggle with the most day to day, far more than any other. I am easily irritated with noise, and in extreme situations it can overwhelm to the point of incoherence.

It’s easy for others who do not live in my head to guess that volume is the main problem here. After all, I often use earplugs to moderate noise and allow me to be in environments I would otherwise not function well in. Yes, volume is part of the problem, but it’s not the more significant one. What really bothers me is what I perceive as chaos.

Chaotic noise is the sound of multiple people talking at once, music that I’m not familiar with, or an unexpected Harley driving by. It is a radio show playing in one room while a TV show plays in the next. It is trying to have a conversation while others talk nearby. Is is the sensory hell of the laundromat, with machines turning, children crying, a TV blaring, a coin machine dispensing, and many conversations in every direction. Continue reading “Chaos and Volume: My Autistic Ears”

Chaos and Volume: My Autistic Ears

What My Boss Doesn’t Know

I work in hospitality. I’m the front desk guy you meet when you check in to your independently owned accommodation after midnight. The night owl behind a desk, giving you a key and instructions that you don’t listen to because you’re exhausted. I point you in the direction of the elevator so you can finally sleep.

I love my job. Many individual parts of it kind of suck, and the pay isn’t anything to write home about. But, I really like the property I work for, my co-workers, and my bosses. Seriously – I like my bosses. The assistant and general managers are genuinely nice guys. They keep us in the loop about things that are happening, and listen to suggestions from us. It’s honestly the only job I have ever had in which I felt like my boss thought my ideas could be helpful – and that includes the time I worked in a business of only 3 people.
Continue reading “What My Boss Doesn’t Know”

What My Boss Doesn’t Know

Just Keep Doodling

Sometimes I notice that a lot of my classmates sit in class, body still, hands still, looking to the front of the room, in what appears to be full attention. Setting aside the texters and chatters (less common in my classes now that I’m an upperclassman), there seem to be a lot of attentive, if quiet, students. They may or may not participate in class conversation, but their whole quiet bodies exude polite attention.

To me this looks like a superpower. If I want to actually absorb anything said in class I cannot do that. I can sit still, but it takes so much of my attention to do so that my mind wanders and I miss important parts of a class discussion or lecture. Actually looking at the instructor the whole time is difficult in a way that’s hard to explain, even though I don’t normally have trouble looking at people in social situations. I need to do something else with my hands and my eyes in order to follow the lecture.

My stimming doesn’t look much like stereotypical autistic habits, though I have been known to hand-flap when very excited. Instead, I have drawn the same patterns down the edges of my notepapers in class since middle school. I buy nice pens in many colors in order to do this in the most satisfying way, with bright colored uni-ball Vision pens having the best feel and color saturation. My notes ALL look like this, from 6th grade Social Studies through college Ecology courses. I take notes too, of course, but the rest of the time I am carefully drawing my patterns over and over.

Image is of a diagonal checkerboard pattern in red and black along the edge of a loose leaf sheet of paper in a 3 ring binder.
Image is of a diagonal checkerboard pattern in red and black along the edge of a loose leaf sheet of paper in a 3 ring binder.

These days I also use fidget toys in situations where doodling my lines isn’t feasible, such as sitting in talks without desks or tables. My favorite fidgets are hard plastic movable toys. They need to be very quiet and have as smooth of a texture as possible. I particularly love the Jeliku Toy and Tangle Jr. These aren’t as good as doodling though, which just seems to open up my ears and calm my mind like nothing else. I definitely learn best when I can doodle my lines.

There’s good reason to let autistic learners stim in ways that allow us to learn better. If we’re spending energy trying to repress our habitual stimming behavior, that is energy not going to learning. I am lucky that I have had very little trouble in college with professors questioning my doodling, but it definitely got negative attention from teachers in middle and high school, who saw it as a sign I wasn’t paying attention. In fact, I’m often the first student to respond to questions in class, and I participate enthusiastically in class discussions, so I don’t think my professors worry that I don’t know what’s going on – they realize pretty quickly that even though I’m not looking at them, I’m hearing everything they say.

Just Keep Doodling

Autism and Acceptance – Of Myself

CN: Discussions of unhappy childhood, mention of institutionalization, mention of ableism.

It’s Autism Acceptance month, or Autism Awareness month, depending on who you ask. This means people like me are facing a lot of misunderstanding right now, along with obnoxious blue porch lights and blue puzzle pieces on Facebook. Rather than awareness, which has a troubling tendency to dehumanize and stigmatize autistic people, acceptance has been key to my own journey. A major aspect of autism acceptance for me has been coming to terms with my own history. I was a troubled, misdiagnosed, and unhappy child, and understanding autism and my own relationship to it has been crucial to acceptance of the way I was back in those days and in my adult life.

It’s hard to explain as an adult how much I struggled as a kid. A lot of this is because a big part of my struggle was real problems with self-understanding. I did not know why I was so unhappy, and so easy to set off into rage or tears. People would demand I explain myself, and some of my most difficult memories are of being in terrible trouble because I could not explain why I responded to things the way I did. I struggled in school academically and especially socially. I switched schools repeatedly, my parents always trying to find a place where I might fit in better, or be less miserable. My family relationships became difficult to the point that I was sent away to a residential treatment program, and even that failed when I was kicked out of the program (it was a staggeringly bad fit for me). I spent my teen years medicated, socially isolated, and deeply unhappy. I did not achieve my culturally expected milestones, like prom and high school graduation.

I was a “problem child,” a “troubled teen,” and labeled with every mental illness diagnosis in the book. Though evaluated for neurological problems on several occasions and put through rounds of psychological testing, I was not diagnosed with autism or Asperger’s Syndrome as a child or as a teen – I believe largely because by my teen years the later was only being recognized in boys, and before that neither were recognized often in highly verbal children.

My self perception, going into adulthood, was that I was a bad kid and that I would never be allowed to live an independent life. I blamed a lot of my problems, especially being expelled from the residential school, on my queerness for a long time, as a way to protect myself from the idea that I was inherently broken. If the rest of the world was too homophobic and transphobic to deal with me that was their problem, not mine. It was partially true, too – many of the institutions I dealt with WERE unfair to me because of my queerness. It just wasn’t the whole story.

This story got me through for a long time, as I matured and developed much better social and life skills. In many ways adult life was easier for me because I had more control and because adults are more forgiving of weirdness than kids are. I got my GED. I found people who shared my interests and who didn’t mind my quirks. I found jobs that were far less overwhelming in terms of stimulus (noise especially) than your average high school. My emotions mellowed. I was doing pretty well.

Then a few years ago someone asked me if I thought maybe I might be on the autism spectrum. The question had occurred to me before, but this person had good reasons to know what they were talking about, so I took it more seriously coming from them than from myself. Since then, further research and consultations with multiple mental health professionals has confirmed this. Unlike every previous diagnosis, this one fits. I firmly believe that if I was born 20 years later I would have been diagnosed as a kid, but instead mine came as an adult like man others like me.

As I got to know other autistic adults and examined the ways in which autism impacts my adult life, I also came to greater acceptance of myself as a child and teen. I now know what I did not as I was growing up – I was not a failure or a problem. Yes, I did a lot of confusing, unproductive, and even hurtful things, but now I have a much better understanding of why I could not be like the other kids. I also have a better understanding of myself as an adult, and a much easier time accepting things about me that I previously saw as deficits or flaws.

I’m incredibly glad that I was already vaguely aware of the autism acceptance movement before understanding how it applied to me, because I never went through any phase of wanting to rid myself of autism. This is who I am, and how my brain is. I am different, and it has caused me trouble – but I also see how a lot of that trouble was the consequence of other people not understanding me, not me being a bad kid. It has made a world of difference for me.

Autism and Acceptance – Of Myself