Autistic and Unfiltered

Note: Shared anonymously. The writer presents a case of self-identified autism. Views are personal and not to be associated with Future Smart. It is also important to note that not all autistic individuals will achieve what the writer has. 

While discussing The Big Bang Theory, a few years ago, my best friend looked at me and said, “You’re Sheldon Cooper!”. The discovery was exciting for my BFF. I was annoyed. As much as we loved the show and the character, the comedy was in the fact that Sheldon could be an annoying twit, with his semantics, and fact-spewing. I was annoyed because it was true. I am no genius (a fact that Sheldon often highlights about himself). But like Sheldon, I was very particular about a few things: facts had to be correct, inflexibility about some routines (I learned this the hard way that as a Pakistani, people are incredibly laid back), changes in plans caused many a meltdown, I possess very poor people skills and inability to read the room. I am also particular about facts and semantics.

The show never mentioned if Sheldon is autistic, but you just know he is. Other things (unrelated to Sheldon) include my  dislike for wearing shoes. I slip them off the moment I arrive at my desk each morning, glad that no one can see me wiggle my toes behind the desk. I also use a lot of brackets when I write (where else would secondary thoughts go, that might distract readers from the central idea, but are a little bit related – see, I did it again). It’s not an autistic trait per se, but in that giant cauldron, it does figure in. I once Googled this, it turns out some autistic people use brackets a lot to cover everything.

Yes, I think I have autism. I’m more than sure, but I don’t have an official document saying that I do. A piece of paper isn’t going to change anything. If anything, it will only confirm my belief that I am in fact autistic.

I distinctly remember how painful it was for me to have my hair brushed out. It’s important to note my hair weren’t frizzy or curly or prone to tangles. And even with my no-fuss hair, brushing felt like the end of the world. In grade 3, my could-have-been bully didn’t find any entertainment when she tried to goad me. It was so boring for her, she gave up in 10 minutes. But, as you can imagine, I didn’t figure out I was being bullied until years later. I’m pretty sure if the school environment at the time hadn’t been what it was, I would have been bullied throughout my school years.

I had strong interests that my peers (boys and girls) couldn’t relate to. I was intrigued by fossils instead of whatever toy was popular in the day. Eventually, this translated into other areas as well. With time, my interests also wavered. At one time, I was obsessed with playing dodgeball, I would practically hallucinate about it. And then I became so good at it, people always wanted me on their team. I might have gone on to play it professionally had it been a sport in Pakistan at the time. Later, when teenaged girls my age were swooning about their celebrity (or otherwise) crushes, I was – once more – clueless.  For me that stage came later. I was a “late bloomer”. Now, you can deduce easily that I was never the popular girl.

As a child it was a breeze to engage with children. Playing a game was easy. As a grown up, without the crutch of an entertaining game, my social skills are sorely lacking. I loved playing with kids, but I now realise I didn’t make any meaningful connection in my formative years. Everything that existed (a connection or relationship) was left behind at school or playground when I returned home. The friends I have today (I can count exactly 4 friends) came along much later, when I finally developed the “connections and relations” area. But as a 30-something woman, there isn’t much I can do about it (read: there isn’t anything I want to do about it).

Everything written above, that was the easy part. TV shows or movies can’t even begin to decipher the POV of an autistic child (and later grown up). The difficulty level was above my abilities when it came to social skills and cues. I learned the hard way to filter words that came out of my mouth: they were often inconvenient truths that made adults squirm. In my defence, I could not understand the gaping void between words and actions of people. I couldn’t tell who was sincere and who wasn’t until I graduated and began to work.

With time, and several other unpleasant experiences, I learned to filter words that came out of my mouth. But it never ended. To this day, I have occasionally blurted out inconvenient truths at the most inopportune times in different settings, including family and a very formal work related meeting. Nonverbal communication flies over my head. I still can’t understand sarcasm, a subtle look or gestures. I also don’t understand things that are implied and not explicitly stated – something that has landed me in trouble many times. For those who think it can be learned, please feel free to send me details of Nonverbal communication 101 from a reputable institute at my toll-free number.

One fine morning, I had to leave early for a meeting at work. I couldn’t find my car keys. I struggled for 7 minutes to locate the object. For me, the efforts were pretty much on the same wavelength as the Independence Movement. The angst and helplessness was real. And just when I was about to go into a meltdown, I found the keys dangling on my finger, along with other things. That’s me in a few lines. Attention and focus are also problem areas. Yes, they do affect daily living in little ways, but what can be done. It’s not as if we can rewire the brain to act more “normal”.

Over the years, I have been called “shy”, “awkward”, “weird”, “odd” and other words that I can’t remember. People don’t really understand that humans weren’t manufactured in a factory with the same settings. Each one of us is unique. But if our uniqueness doesn’t comply to the acceptable norms, we get labelled with those words. When people think that I’m odd sometimes, I probably am – for them and their standards. For me, I’m perfect.

And even with family, it has not been easy. I spent at least 80% of my life feeling a mixture of guilt and shame, because I wasn’t the person everyone wanted me to be. I came to terms with it years ago. But somewhere, in the deepest recesses of my heart there was this constant nagging thorn that whispered, ”something is wrong with you”.

Several years ago, courtesy of Reddit, I found several people who had similar challenges. It was only then, that I began to wonder what if… There were so many people, men and women who had spent their lives not knowing what held them back. Not all of them went on to get a formal diagnosis. But deep down we all know.

I once shared my thoughts with someone. They were blown away. They couldn’t understand how I could even think I had autism: I was educated with a postgraduate degree. I told them that it didn’t say anywhere that people with autism can’t get an education. Word to the wise: many people with high functioning autism or Asperger’s will live their lives going undetected. Think of your clueless professor at university or the socially inept colleague, there’s a high likelihood that they have ASD. Undetected and unidentified autistic people may be prone to depression – partly because they will live life under a burden of guilt, being bullied throughout their lives or more.

Having spent at least 30 years of my life with certain tics and habits blinded me to the fact that they were symptoms, not habits. Living in Pakistan, with people who are oblivious of all things that cannot be seen hasn’t helped. Understanding that I most likely am on the autism spectrum has not helped me make my life better. But it has made me comfortable within my skin in a way that I wasn’t before. The voice that once whispered “something is wrong with you” has been laid to rest. I now understand why I did things that I did, or why I had a meltdown. Perhaps, my life could have gotten easier had there been systems in place that offered support (within the family, educational institutes, workplaces and other areas). But there aren’t.

One can only hope that in the coming years, things will get better, people will be more understanding and we will develop empathy to all who are autistic. For others who think they might be autistic: friends, there’s nothing wrong with you, you just weren’t meant to fit the mold. For parents of young kids (diagnosed and undiagnosed): please understand the uniqueness of your child, get help, but please know you cannot rewire their brain. In the end, I would like to add that autism or ASD doesn’t make me who I am, it doesn’t define me either, but it is a part of the package that I’ve embraced wholeheartedly.

I’m adding a list below of habits/symptoms below (it’s not all inclusive). I got over quite a few, the others still live on. Perhaps, people will find it useful:

• Being talkative (with familiar people only)
• Not understanding risks or danger.
• Inability to recognize feelings and emotions (self and others, now mostly overcome).
• Sensitivity to fabrics (I only wear cotton or cotton-like fabrics now)
• Inattentiveness
• Forgetting to do things frequently
• Trouble following sequences
• Easily distracted
• Problems with focus (it goes both ways. Sometimes, I can’t focus, at others, I experience hyperfocus)
• Zoning out when someone is speaking (doesn’t apply to conversations. But when a speaker goes on and on, I’m usually lost after 1 minute 28 seconds).
• Require notifications  about things to be done (I don’t automatically realise that people are expecting me to do common or everyday things).
• Aversion to strong smells and taste
• Aversion to some food items due to texture
• Talking to myself
• Sensory overload/Overstimulation
• Stimming
• Clumsiness (often drop things)
• Explaining things in (mostly unnecessary) detail
• Watching TV shows/movies or reading books again and again. Sometimes, I began watching the movie again right after it ended.
• Screen addiction (as a child, now over it)
• 

Note: just because I fall in the high functioning category (or aspergers), people tend to ignore everything in the list above.Many autistic individuals will relate to the list, while others won’t.

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