Woman wearing hat walking down tree-lined path

Autism Is My Constant Companion

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I suppose I will not forget the 12-year-old girl who months ago caused me to suspect I was on the autism spectrum. Her behavior reminded me of creating my own world and talking to imaginary characters, at times pacing the floor.

I’ve lived with autism all my life, but I didn’t know its name until after the 12-year-old and I crossed paths. Now that we’ve been formally introduced, I am aware that it doesn’t leave my side. I recognize it playing its invisible role as I go about the business of living. It is my constant companion, and it is invisible to those around me.

I am sitting in a church classroom. I am a first-time visitor. It was no small task for me to come into the room where there was no familiar face. The people seem nice enough, though. But the hour is up. It is time to leave, but the teacher isn’t done yet. Her talking becomes static noise to me. I stifle my impulse to leave. I imitate the “proper” behavior of those around me. I want to “stim” — rock back and forth, boggle my knees, pace the floor — but that would draw unwanted attention. Finally, she’s done and the class is over. I head out the door breathing a tremendous sigh of relief.

I’ve played this scene countless times. My experiences are for the most part invisible. The turbulent storm with its pouring rain, lightning streaks, and thunder claps are all inside of me. I don’t announce to the group I’d rather flee than to continue pretending I am fully engaged. I try to stifle the impulse to stim. I work hard at pretending to be “normal” until I can get to that safe zone where I can take the mask off.

As far as I know, I learned to talk on the same schedule as my peers. I did well in school grade-wise. Since I wasn’t graded on my social interaction skills, that never came up. Some of my teachers might have suspected something but not enough of a something to warrant seeking a diagnosis of whatever that something was.

I suspect there are a lot of people who are living on the spectrum who don’t know they are. It took me 58 years, the right job as a special education aide, and a 12-year-old to introduce me to my lifelong companion who is no longer invisible to me.

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Who Decides If I Am ‘High-Functioning’ or ‘Low-Functioning’ as an Autistic Person?

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I once had a boyfriend who broke my heart. I thought he was my boyfriend, at least, but he thought otherwise. Am I “high-functioning” because I had a boyfriend? Am I “low-functioning” because my heart was broken or because I didn’t realize we weren’t actually an item? Am I more “high-functioning” because I’m autistic and had this relationship, no matter if we were actually together or not?

How confusing are the labels of high- and low-functioning? I just want to trash them, to be honest. The main definition of function is “to work or operate in a proper or particular way.” Who decides what is proper? Is it not completely subjective? Am I less “functioning” because I happen to be autistic and have bipolar disorder? Am I only less “functioning” during an episode?

The verbal world can be exhausting to me. I burn out easily and need to sleep it off before I can handle any more. This is because, compared to the average person, I process other people’s words slowly. Does this make me “low-functioning”? I have an above average IQ, though — does that make me “high-functioning”? If there are times I prefer not to speak, does that make me “lower-functioning” because I’m not living up to someone else’s standard of what’s comfortable and acceptable?

What I’ve written may have confused you a little bit. That might be because it’s mostly subjective, and questions like this cannot be answered in such a black-and-white manner. “High- and low-functioning” is black and white, while this world is colorful and full of very different people. Only seeing someone’s difference as being a negative is ignoring the brilliance of that person, and only focusing on someone’s “sameness” is ignoring the struggles that person might face. It dismisses the fact that what’s assumed is the need to adjust to someone else’s standard of what’s “proper.”

In short, I would just like to say that I think I am simply functioning. Maybe not to your standards, but my own. I may not be able to sing at all, but I can paint and draw, and that’s enough for me.

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When Someone Said I Could 'Pass for Normal'

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I am an autistic self-advocate and author. A few years ago I had a launch for my book about employment for autistic teens and young people. I was excited at the prospect of this – my second book – making its way into the world.

Around that time, a friend of a friend had made contact with me. She seemed a little disrespectful, and I regretted passing on my phone number after she called me and tried to convince me to promote some lifestyle course she worked for to autistic people. I had to be quite forthright and assertive and tell her in several different ways why I did not want to promote her course to autistic people. I felt quite used by this woman, and hoped I wouldn’t have to have further contact with her.

My book launch was at the National Library of Australia, a prestigious location for my little orange book. The book was officially launched by the CEO of the local autism peak body. I gave a presentation on the book and its journey from being thoughts in my brain into being an actual thing. My talk was focused on the strengths of autistic people, on valuing us for who we are and respecting our different but valid approach to the world. The applause was great and I was delighted that so many of my friends and family were in the audience.

Just as I was about to go downstairs from the lecture theater to the book shop where I would sign books, I saw the woman who had been promoting her lifestyle course. I was a little anxious that she might engage me in conversation and try to promote her course some more.

I signed books for so many people. The illustrator, Andrew Hore, was sitting next to me and we had a great time tag teaming the signing and swapping different color pens with one another. I met new people and signed books for relatives and close friends. Towards the end of the event, the woman I’d had trouble with came up to get a signed book. I was anxious, but told myself she would probably be nice after hearing my speech on autistic pride and identity and capabilit.

As I handed her the book she said “You know you shouldn’t say you are autistic. You could pass for ‘normal.’” I was floored. I didn’t know what to say. After that lovely evening and me speaking about how autistic young people could use their strengths and be proud of who they are, this woman was telling me that I should hide my hard-won autistic identity because I could look non-autistic. She was basically negating the essence of who I am.

There were a number of friends near the table who heard what the woman said. I somehow summoned up the response, “I do not wish to look non-autistic. I am proud of who I am, autism and all. I don’t think you were listening to my talk, because that is a terrible thing to say to a person.” I was noticeably shaking as I said those words, but I was proud of what I said.

Like so many other autistic people, or people with disability and / or mental illness, we travel through life being told why we are less, deficient, incompetent and that we should be grateful for anything we get. I spent my teens and early twenties desperately trying to act non-autistic and it almost destroyed me. I internalized bullying and abuse and hatred to a point I wished I wasn’t me. I tried to fit in to any peer group that would have me, regardless of how negative or dangerous that might be.

The point at which I accepted myself as an autistic woman with a unique and beautiful mind  was amazing. The comments by the woman at my book launch just blew all that positive self-talk away. I was sitting in the National Library signing my book, but I was also in school having bullies taunt and shame me. I was in those dark places of the soul brought on by loneliness, isolation and despair. I was being told I would not be able to work because I am autistic, that I couldn’t possibly be creative or have empathy and every other foolish stereotype.

So my response to the woman at the book launch, even though it took a lot for me to say it, actually represented me reclaiming my identity. I wouldn’t have changed what I said, and I was so grateful to everyone who witnessed the comment and offered support afterwards. I hope the woman has grown a little in her journey of understanding difference since then. In fact, that experience did help me to define myself, so I am oddly grateful to her for providing me with the opportunity to publicly plant my Jeanette flag in the land of “Autistic and Proud.”

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Teachers Create Finley's Barkery to Employ Adults on the Autism Spectrum

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Finley’s Barkery, a Minnesota-based bakery, makes treats for dogs and is staffed by adults living with autism.

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The Colors of My Mind on the Autism Spectrum

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I don’t know how thinking is for everyone else, but for a long time I thought it was the same for them as it is for me.

My mind doesn’t stop; it spins and shifts in different directions creating webs of patterns, linked by varying hues. The demand for constant input, the never ending search for an answer and the grip of anxiety when a question arises gets steadily brighter and brighter as if it is a scream, crying out for a solution. It can’t be left unknown, wondering away in my head. To leave it is to invite regular intrusions into my mind, increasingly shrill demands that feel like an ever-growing pressure on the inside of my head trying to force its way out.

To find the answer is to connect it with the whole, allowing it to form part of the matrix and develop its own offshoots. The solution leads to more questions, thoughts and connections; the matrix gets bigger and demands more data to feed its ever growing form. Then it starts to slowly develop edges. The myriad of colors and connections that have been shifting, adding and re-forming are quieting now. I can see how the pattern works, where the shapes, colors and connectors interface and meld to form the whole. I have my solution, at least for now. At least until it starts again.

This is how thinking works for me — the constant whir, with a seemingly endless thirst for variables and information. The more interesting or exciting the topic, the more rapidly it builds and the brighter the pattern is, with many more strands that form and throw out new questions, new directions and new patterns. This hasn’t always been fun. I’m not good at finding ways to explain my thinking to others. I make connections, go in different directions and form patterns and color bonds that make sense to me. To others I think it can seem random, like I’m making huge leaps that make no sense or I’ve gone off in a completely different direction. Sometimes people think I’ve just started talking about something else.

How can we be having the same conversation but not be in the same place? The patterns, matrix and color blends we’ve created must at least be similar. I may not think the same way as most people; sure there are, as far as I can tell, similarities, but it’s not the same. The closest thing I have found is when I watch people brainstorm with spider diagrams. If you imagine that with multiple blending colors, in three dimensions and adding multiple strands at once, that’s closer to how I think.

I hated it for so long. Not because it was different — it made it possible for me to make links and connections others didn’t. I would come up with ideas that never occurred to most people and found links and similarities between theories that helped me understand processes and develop new theories. Not that I’m always right; I am often not. The hatred didn’t stem from the difficulties I had communicating thoughts to others or the inability to hold them inside. It came from the fact it never stopped; it was constant. I never felt I had peace. I was exhausted mentally and physically; there was just to much information and I couldn’t make sense of it all. It was overwhelming.

Sleep was something that only came when my body physically couldn’t keep going. It just shut down, but not before hours of lying in bed trying to find ways of quieting my mind. This often meant that I slept for only a few hours a night, and I gave up going to bed at a reasonable time, reasoning that there was no point if I wasn’t going to be able to sleep. This went on for years and I hated it. Despite all the positives, I just wanted it to stop. I wanted to sleep.

As I moved along my journey to diagnosis, I started to assume this thinking was my Aspie brain at work. If this was the case, how could I get respite? As I came to understand other parts of myself it eased a little, and I would sleep more, but usually at the wrong time of day. My sofa was and is my friend. Then something happened, and it led to one of the most terrifying days of my life.

The day itself was fairly average; it was a warm, reasonably bright and pleasant, fairly typical English day in June. I had been struggling with tendonitis in both wrists for months, was experiencing a reasonable amount of pain and had both wrists in supports all the time. Pain killers helped, but I didn’t like taking so many for so long and it wasn’t making things better. The doctor had an idea, amitriptyline. It’s a drug that is often used to treat anxiety and depression, but also chronic pain. That morning I took it for the first and last time. I may have felt less pain, but this was inconsequential as it also appeared to turn everything off. I had dreamed of the day the whirring would stop, and now it had. But for me it was terrifying. I imagine this is what it would be like to suddenly lose one of your senses.

My brain didn’t work; the patterns wouldn’t form, the colors had gone and I had to think about thinking. There was no noise in my head, just nothingness in the huge space that once bustled and demand more and input, always seeking to grow and find new patterns. Now it sat quiet, and that was it. I was gone.

I’ve come a long way since that day. I have grown and learned new ways of finding respite from the information overload. Stimming is right at the top of that list, but so is not fighting who I am or wishing away a part of myself. Now my brain whirs, and so does my body. They work together, and as one I find peace.

Aspie and Proud.

Editor’s note: Please see a doctor before starting or stopping a medication.

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