Feeling Too Much
I discovered that I was autistic at 32 years old
I am self-diagnosed autistic. Which one of these words disturbs people the most? Self-diagnosed or autistic? Probably a mix of both. They think I am a hypochondriac woman who tries to find an excuse to be weird. And the word autistic confuses them; too often they imagine we all are non-verbal and need help twenty-four hours a day. I can’t blame them: my knowledge of autism was almost inexistant a few years ago. Yet, it’s frustrating to have to defend self-diagnosis. When I discovered I have Asperger’s syndrome — which is high-functioning autism — at thirty-two years old, I felt as if something had been implanted in me at my birth. I felt I was defective, and I considered it as an illness.
In the years preceding that revelation, I had read many self-help books, and I always ended up disheartened because I couldn’t change. No matter how hard I tried, I was still socially unadapted. I suffered from depression and anxiety, and I was only feeling good when I was at home, with a book and a cat on my lap. I had thought that yoga, meditation and positive thinking would bring me peace. Of course, it didn’t happen. It will never happen. Autism can’t be cured.
The disadvantage of being self-diagnosed is that I don’t have access to any psychological help. Do I want to have an official diagnosis? Nothing in the world would make me happier. Yet, it’s not that simple, especially for a childless woman. Many autistics diagnosed in adulthood find out when their kids are identified as such. Besides, having Asperger’s syndrome means that an appointment seems unbearable. I worry before a banal check-up with my MD, therefore the prospect of spending months going from appointment to appointment distraught me.
Sometimes, a wave of exasperation hits me. All I want is help. But I am alone with my autism. In those moments, I withdraw from the world, and I listen to music, write, and watch my favorite TV shows. For autistic people, escaping reality is a strategy to cope with daily life. Even though it might seem strange, it’s the only way we can find a little peace of mind.
I first heard about Asperger’s syndrome on a national radio show, where I was listening to an interview with an autistic woman. My attention was caught when the host mentioned the peculiarity — as she called it — that Asperger’s people need to leave a crowded room to have some time alone. I stopped dead in my tracks. Wait. Wasn’t it normal? Apparently not. And I was just finding it out at thirty-two years old. I had spent my life escaping people; when I was a child, my mother would bring me to the restaurant restrooms because I couldn’t bear the noise and the crowd any longer. Not that those restrooms were my favorite place on Earth, though: they smelled of strong soap and disinfectant, and the lights were too intense. But at least it was quiet.
So far, I hadn’t given a second thought to that attitude; I had always been that way, and I was too focused on myself to notice that “normal” people didn’t do that. I also discovered that my propensity to line up my toys and get my possessions from my bedroom drawers to rearrange them was odd. This habit has stayed with me since my childhood, and if I am not aligning dolls, now, I like to pull out the items from the pantry or books from the bookshelves. Perhaps unconsciously, it’s the reason that pushed me to minimalism. It’s easier when you don’t have to put out fifty half-opened spice bags or a thousand books from the dusty shelves.
When I was a child, my mother patiently observed me get the food from the pantry, placed it on the table and the counter, and then put it back. Without cleaning the shelves or anything. I liked to organize the items by zones, and sometimes by color. And Pinterest didn’t even exist back then. But those eccentricities are the lighthearted side of autism. It might seem cute — or perhaps you find this conduct abnormal — but less poetic are the mental health problems that affect autistic people. Because you can’t live in a neurotypical world without suffering.
Right after I discovered I had Asperger syndrome, I researched a lot about the subject, because it’s what Asperger’s people do. I soon discovered that I couldn’t identify with autistic men, but I found interesting books written by women. And I realized all those eccentricities that I had all my life weren’t normal. It was terrifying, but most of all, it was heartbreaking. More than ever, spending time alone, escaping through books, sitcoms and music, became a necessity. During those moments, I wasn’t autistic; I was just me.
It took me several months before I experienced what most autistics described as “my life suddenly made sense.” It sounds like a cliché, but it’s so true. After having spent three decades struggling with friendships, being exhausted after having interacted with people, smelling and tasting and hearing more strongly than everybody I knew, I now had an explanation.
People have always told me I should go out more, socialize with others, and that I wouldn’t be that depressed. These words exasperated me even before I found out I have Asperger’s, and they are still exasperating me now. On the contrary, the more I socialize, the more I will end up depressed and exhausted. I need to be in my world to unwind. It’s hard for neurotypical people to understand that one is filled with panic when going to the grocery store.
All my life has revolved around anxiety, around those insignificant things people do without thinking. Never have I experienced an appointment with the dentist or a Christmas party without a wave of fear coming inside me. It might seem terrible, and in a way it is; living with that anxiety day after day is draining. Autistic people need to shut away from the world, this world that isn’t made for us. It’s too crowded, too noisy, too smelly. It’s too much.
I can’t work outside the house. In Canada, 86% of adults with autism were unemployed in 2012. These statistics don’t shock me in the slightest, but it doesn’t prevent me from feeling inadequate. I had a few jobs when I was a young adult, but all of them led me to a meltdown. People consider me lazy, because, well, you know, being a writer isn’t a “real job.” Those remarks used to make me feel guilty. Sometimes, this emotion is still there, and it breaks my heart.
“The supermarket is desperately searching for cashiers,” someone well-intentioned, would tell me, even though I already have a job as a writer. They don’t know that getting to the supermarket is a nightmare. They don’t know that the bright lights hurt my eyes, that the choice is overwhelming, and that the noise of the cash registers is insupportable and feels like a bolt of lightning through my body. And what to say about the crowd? I’m not a sociable person. In Seinfeld, one of my favorite TV shows, Elaine says, “I hate people.” Jerry answers, matter-of-factly, “Yeah. They’re the worst.” If I had to spend eight hours a day in a supermarket, you would find me curled up in a ball under a cash register, playing The Band or Townes Van Zandt on the jukebox in my head. Oh, I haven’t mentioned the jukebox in my head, haven’t I? Hundreds of songs are playing constantly in my head. Which is wonderful when I need to soothe myself and haven’t access to music right now. But it’s also irritating when that jukebox is playing a jingle or an ABBA song.
Few people know I am autistic. Only my partner. And my aunt, who is a lot like me. I didn’t even tell my parents. Why? Perhaps because the loss I felt when I discovered I was autistic was enough to bear, and I don’t want to live this experience again through my parents. Sometimes, it’s easier to pretend everything is normal, that I am just a weird woman who prefers to spend time alone with her cats.
For all of you neurotypical people reading this — neurotypical is a common term, you are the normal ones, apparently — please, take a while to reflect on autistic people. Perhaps you know one or many of them. Perhaps you are married to one of them, or the parent or the friend of one of them. I concede it’s probably difficult to understand us, but it’s difficult for us to live in a world we are not equipped to deal with. Our brains are not wired like yours. We aren’t less intelligent — in fact, most Asperger’s people have an IQ average or above average — but we are thinking differently. We are feeling more intensely. Every odor and noise and taste are amplified. Being autistic is always exhausting, sometimes defeating, sometimes infuriating. But most often, we are too busy feeling our way through life to muse over our autism. It’s there, but it doesn’t define us. We are human beings, first, complicated human beings, I admit, but we are all different in our quirks and we can teach you so much about acceptance, if only you let us.