** Note, December 2023: This Blog was written in 2018 when I was not aware of the preference of the larger part of the autistic community to refer to themselves as 'autistic' rather than 'with autism'. Fortunately, I now have learned and will always will refer to someone as 'autistic' rather than 'with autism' unless the person themselves indicate a different preference. To avoid whitewashing my own writing I have left the original text intact.
For the past six years I have been working in the field of Digital Humanities, trying to make sense of ‘big data’ for humanities research with computational methods. Exploring the possibilities and limitations, to seek out new methodologies and basically to go where no humanist has gone before.
For the past six years I have been working in the field of Digital Humanities, trying to make sense of ‘big data’ for humanities research with computational methods. Exploring the possibilities and limitations, to seek out new methodologies and basically to go where no humanist has gone before.
For the past six years I also have been the father of a daughter, Anna, with autism. What I have been doing professionally she has been doing her entire life: trying to make sense of the ‘big data’ in her head with the methods she has at her disposal.
It is difficult to define what autism is. It is a spectrum with many symptoms, and individuals on the spectrum will be affected differently. For me it helps the most to think of autism as an ‘information processing disorder’. People with autism, or people with ASD (autism spectrum disorder), see and view the world fundamentally differently than people without. Often they have trouble filtering information and sounds, which can make the outside world an overwhelming place. This filtering of information and data also can be a problem for the processes taking place in the heads of people with autism. It is difficult to find the right piece of data for every situation, turn it into useful information and knowledge and use that in a practical way. As a consequence, some people with autism barely speak, or are even completely mute. Others do the opposite and will rant endlessly to compensate. Others do both. Some do not speak, but do read and write. People with autism can therefore be very present, or completely silent. People with autism often have difficulty functioning in modern society, with its fast pace and many daily impulses.
Autism should, however, be considered as a variety, not as a disability, and most certainly not as a desease. Many people with an autistic brain can function well, some would say even better, if circumstances allow it. Some of the greatest minds in history, like Mozart, Darwin and Einstein, may have had autism. Some people with autism are disabled, because they cannot function in society on their own. Most, however, just function differently. Only time will tell how ‘severe’ my daughter Anna’s autism will continue to be. She does not speak normally; sometimes she does not speak at all; at this point there is no way of knowing if she will ever function (properly) in society; if she will ever know romantic love; if she will able to cope with the loss of loved ones; if she will ever deal with her neurotypical brother on equal terms; if she can ever live on her own. At this point there is no greater fear in my life than the thought that she will die alone in some kind of nursing home, frustrated and misunderstood, thirty years after me and my wife are gone.
Coming back to the Big Data Metaphor: when looking at Anna I often wish I could know what she is thinking. And I often wish I could make sense of the ‘big data’ in her brain. It’s like there is a barrier in Anna’s head, which makes it difficult to make sense of all the pieces of data. We do not know how ‘big’ the data in her head is, but we suspect it is big. She was extremely fast as a baby to learn words, phrases, songs, et cetera. Ironically it looked like she would be able to speak well ahead of her age. This changed when her autism stopped her from channeling all the data in her head into speech, when she was around two years old. It is therefore likely that since that time she has amassed a huge pile of ‘big data’ that begs to be sorted, categorised, and, most importantly, translated into useful information and knowledge.
Some pieces of data are easy to find for Anna. Especially colours. She can play happily with a yellow ball while repeating ‘the yellow, the yellow’. Sometimes she even refers to me and my wife with the colour of clothes we are wearing. When she is searching for a toy she can continue repeating ‘Does Anna want the blue, does Anna want the blue’. Making me and my wife desperate in repeatedly asking her ‘the blue what, Anna?’ Anna knows the word of the item she is looking for, but it causes her visible pain to delve deeper into her brain and find and use this piece of data.
At times Anna taps into more data to describe a situation, and very rarely this even makes her sound almost neurotypical. Anna’s biggest problem may be grasping the link between words and having a ‘normal’ conversation. She uses the big data in her head to let us know what she wants, or needs. If a child in the playground tries to strike a conversation with her, she stays mute, unable to respond well to an unexpected query in a different setting from an unknown person.
Anna’s problems with dealing with the big data in her head makes her attached to the structures she does know in her life. When we prepare her to go to ‘school’ she knows she has to take the bus to go there. When we walk to the car on Sunday she knows we will do grocery shopping. When we take the car on another day she knows we may do something fun, like going to her grandparents, or to an amusement park or petting zoo. If something does not go according to what she expects, a little drama can unfold. If, for example, we drive in grandfather’s direction but go somewhere else she will protest. If we cannot eat french fries for lunch when ‘going out’ she will protest (even in a pancake house).
As a researcher it is my duty to try to do proper and conscientious research with big humanities data. As a parent it is my duty to try to hand Anna the algorithms to make sense of the big data in her head. The metaphor can be carried on to quite some extend: Some things are easy to find with the algorithms, like colours, while others seem to be unattainable at the moment. If something unexpected happens the algorithm will fail. Sometimes we have to accept a less than optimal result. Sometimes we only are able to scrape data, without getting any information or knowledge. And we always should be aware that maybe for some things we have already reached the summit of what we can achieve.
Fortunately Anna has one advantage to help her out: the human mind is wonderful and powerful. An algorithm or methodology for humanities research can only be improved by the researchers. Anna’s mind is a processing pipeline that she will continue to improve over time. That way she may be able herself to find the proper pathways to make sense of the big data in her head and translate it into information, knowledge and eventually communication. Time will tell.
