Asperger's,Autism Spectrum Disorder


My memories of my grandmother are always of her playing the piano in a deep sense of cigarette smoke. The clear tones from her fingers touching the keys, the intense focus with which she played, as if lost in a world of her own creation. And of course, her shouting from the other end of the house whenever I, as a child, practised the piano myself and inevitably made mistakes. She could hear a difference in every key on the piano even from across the house. The piano was her most sacred place, I felt, and when the Alzheimer started to take away her mind, it was her loss of the piano, not her loss of memories of my family, which pained me more than anything.

Alzheimer’s is one of the most frightening things I have ever seen, and something I fear immensely for myself in the future. To my eyes it takes away your mind entirely and leaves only your heart, without protection or shielding, free for all to see. To be honest, I fear my heart may not be all that it could be, and I fear to leave it bared. In my grandmother, once the anger and the frustration had finally let her go, I saw only the beauty of her good heart unencumbered by fear or restraint. It does still hurt me that she cannot play piano like she used to, in fact, she doesn’t even remember what a piano is. Her ears, however, they recognise every sound. When she hears music, her entire composure can change. Her body feels the music, even if her mind has forgotten. When something is off key or bad, her face gets twisted in an unhappy grimace and sometimes she will complain with whatever words she has available to her.

You might have guessed that my grandmother was born with perfect pitch. She wanted to be a concert pianist, but was persuaded by her mother to give it up and become a secretary. I cannot understand how, because as far as I remember, she spent every free moment she could spare at the piano. When her fingers began to lose their strength and sense of purpose, and her mind began to falter, she cried and cried and asked me, on more than one occasion, to help her die because she could not go on.

My mother taught music in school, and even if she did not have my grandmother’s unearthly talent, she was quite good. As you can imagine, the idea that other people weren’t able to hear what I heard was just silly to me growing up. I didn’t even realise that everyone didn’t have perfect pitch when I was younger, and I thought that I didn’t have very good hearing. I did not understand how others could not hear what I could, because I thought their hearing had to be better than my poor hearing. It was the most awkward moments when people I knew would sing off key or try to make me listen to music and were not able to hear the mistakes in it.

When I was younger, I did go drama school for almost a decade, starting at the age of six. It was like growing up on stage and I loved those days very dearly. It was mainly musicals we did at the local theatre, and to improve my abilities I did choir practice and different styles of dance over the years. Back then, when I heard music or singing, it was either correct or incorrect – no other option existed for me. As I grew older, especially after I stopped working with music, I began to listen differently. I can now hear that mistakes can sometimes be charming, odd as it sounds.

I am very sensitive, however, and sounds can be extremely painful. Not just music or song, but simply voices of people talking can be either calming or very painful to me. Sounds like the keys under my fingers as a type on a PC can even be so distracting that I cannot write if I have a bad day because it hurts my head. Also, when I say painful, I mean physically painful. Like light can hurt my eyes, so sound can burn my mind. Some sounds are worse than others, but when I am stressed it gets worse than ever.

Going into the city is like an explosion of sounds, smells and lights all overloading my brain. The lights, in different colours and brightness, blind my eyes. The sounds, so varying in intensity and tone, can make me feel unable to distinguish one from the other. It can be too much, and it often is. I prefer the countryside and I always will.

In nature, what I hear is simply nature. It is calm and beautiful, and at those times, I feel so grateful to be born the way I am. The sound and smell of the ocean, or of rain or snow, are some of the most magical experiences I have ever had.

I know I need to deal with the sounds and lights of the city every time I venture outside of my home, and of course as you know from last weeks post, I use sunglasses far more often as it takes the worst of the pain from lights. Sounds are trickier to handle, however, not only because they are more painful to me than light can be, but also because I must bear it more often too.

I don’t like the feeling of earplugs, but I know many uses that. I always use headphones when outside, and if I don’t it is because the situation demands my full attention for some reason. I listen to different kinds of music depending on the noise I need to drown out. When people are loud, for example, I listen to rock or heavy metal, because I find nothing else can drown the extreme noise. When in quieter situations, I like classical, jazz or some of the modern musicians who’s work I admire. White noise is good too.

Whenever I can, I listen to audio books. I find it calms me down when I feel things too strongly. I especially like radio plays, because my inner eye automatically transports me far away as the story is recreated around me. I see, smell and feel things as if I was there, and so I can get through difficult train rides or walking down a busy street. Noise cancelling was one of the most wonderful inventions I ever came across and it makes my life a lot easier.

If I have no such device available to me, I am not without any chances of handling a situation in a noisy place. If you have experience with others on the spectrum, you may have seen the hand movements many do, the very hand movements that are also often depicted in movies. I do that when I have nothing else I can turn to. It is but a small movement with my fingers which generate a sound most others do not notice, yet it is distinct enough for my entire focus to centre on the sound. It doesn’t take the pain away, but it removes my focus from the pain and to the sound, and thus it helps me stay calm. This is of course what is called stimming – self-stimulatory behaviour. I do not know why others do it, but that is one of the reasons I do it.

My only problem is, I wish people would not stop others on the street when they wear headphones. They do, and it always pains me. I cannot say no if someone stops me on the street, but taking of my headphones is just so very painful. It adds even more stress to a social situation that I would much prefer to be without.

Have you ever turned on your TV or something and the sound is far louder than you remember, leaving you scrambling desperately for a remote to turn the volume down? That is what life is like for me. When I hide behind my headphones, it is like having the TV on mute. When I take them off, the TV gets turned on max volume. Only, I can never turn it down like you can turn down the volume on your TV.

Now, this doesn’t mean that I have a generally better hearing than everyone else. There are plenty of times when I cannot hear what is said around me. Perhaps, a better way of describing it would be that the volume is similar, but the number of sounds is heavily increased. I cannot tell for sure, because I can’t imagine what other people hear.

I hope that this can give you an idea of how sound and hearing can be a very different experience, depending on who we are.

The first article I wrote about this is called Hypersensitivity, and in case you want to know more about this topic, it’s a great place to start. You can also just skip to any of the other senses, which are: Sight, Smell, Touch or Taste.


I graduated my masters in 2017 with a major in Japanese studies and a minor in international relations. Since my graduation I have focused on figuring out who I am, because I was diagnosed with Asperger's (Autism Spectrum Disorder) and it made me rethink my life and allowed me to understand myself better. Because I have always been passionate about writing, I decided to blog about my life in the hope that it can increase autism awareness.

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