My name is Nick Dalton. I am the man who asked you the two questions about something you struggled with. I think you partially understood what I was saying, but then you digressed. This was likely your first CHI, and I didn't want to make it more uncomfortable for you than I already had, so I didn't pursue the issue.
I want to respectfully and academically challenge your paper.
The session you were in was titled "Assistive Technologies for Learning and Information with Neurodiversity." You used the term "neurodiversity" in your introduction.
Ten years ago, I wrote a number of papers introducing the word "neurodiversity" to the human interaction community, and I want to follow up on that.
The term "neurodiversity" is attributed to Judy Singer, an Australian sociologist who is herself on the autism spectrum. She first used the term in the late 1990s. Singer aimed to shift the discourse around neurological differences from one of pathology and deficit to one that recognizes and values the natural diversity of human brains and minds. Her work, along with that of journalist Harvey Blume, who also used the term around the same time, helped lay the foundation for the neurodiversity movement, which advocates for acceptance, accommodation, and appreciation of neurological differences as natural variations within the human population.
The term "neurodiversity" originated from a self-advocacy movement initially of people on the autism spectrum, but later the term spread to cover a number of similar conditions. Historically, the reason for the advocacy movement emerged out of a number of historic factors. Terms like "Asperger's syndrome" were originally created so that Nazi doctors could differentiate between those who should go to the gas chambers and those who could be reclaimed for some useful, albeit primitive, work. This was not confined to Nazi Germany. Forced sterilization of those with autism was not abolished in Japan until 1996. While rare, currently, there are laws in 31 U.S. states and Washington, D.C. that allow for the forced sterilization of individuals with disabilities, including those with autism. It should be pointed out that no state allows forced sterilization for the worst crimes, including rape. So, from a punishment point of view, autism is considered worse than mass murder.
Possibly with the introduction of the internet, people on the autism spectrum were able to come together as a community. Out of this, what has come to be called neurodiversity emerged.
Neurodiversity challenges what is referred to as the medical pathology of autism. There are a number of pointers towards this; firstly, if autism is such a spectacularly disabling condition, then why hasn't it quickly evolved out of the human experience? Secondly, it is very difficult to identify the neurological differences that define one brain as dysfunctional and another as neurotypical. The term "neurotypical" was also created by the neurodiverse community to describe those without a neurological difference. Sometimes the term "neuromajority" is used.
The Neurodiversity movement, deliberately modeled itself on other fights for social justice, such as feminism and queer rights. It challenges the defective model of autism. From the neurodiversity point of view, autism represents a different way of being human. It exists because there are upsides that benefit the larger neurotypical community. As such, autism, and now other conditions associated with neurodiversity, such as dyslexia and ADHD, etc., are not forms of brain damage but brain differences.
This is not to deny that brain damage does exist; for example, Parkinson's is clearly a medical pathology.
As such, neurodiversity should be regarded as a political stance similar to feminism. It should not be used as a polite collective noun for those who are neurodivergent, any more than we can refer to persons with feminism as a synonym for women. Not all women are feminists, and not all feminists are women.
Instead, the officially accepted community term is 'neurodivergent'. Being neurodivergent means having a brain that functions differently from that of the average or "neurotypical" person.
We can, and in fact, many do ignore the meanings of community terms. Academics can co-opt terms to mean anything they like; however, this form of appropriation shows gross insensitivity to the thinking and the communities from which these terms originate. We could also refer to feminist toilets if we liked, but typically we do not. Academics are largely part of the predominant neurotypical group and, given that they are the majority, have the power through greater numbers to override the original terms. This is what your paper perpetuates in the first line of the introduction.
As a neurodiverse, dyslexic academic and father of a child with autism, I can understand that from a medical pathology perspective, you might want to help children on the autism spectrum learn to collaborate.
In my experience, I have encountered many people who cannot believe that I cannot learn to read. When I was being assessed during my Ph.D., I spoke about this to a senior professor who was conducting the disability assessment. She pointed out to me that dyslexia was like losing an arm; it was never going to grow back, and no amount of work was ever going to make it right. If I had that level of neuroplasticity, she pointed out, then I would not be dyslexic. All I can do is rely on assorted associative coping strategies, just like a paraplegic uses an artificial leg.
This is the same for your subjects. They are never going to be able to process social cues as you do. I know that many well-meaning people feel that if only we try hard enough, we will be able to overcome these limits which seem so simple to them. This is not going to happen. If I lose my legs, I'm never going to be able to run like you, no matter how hard I try. I can have coping strategies. The best thing that your game is going to achieve is getting these students to develop these coping strategies early on.
They are never going to be as good as the natural abilities of a neurotypical. If they could be, then neuroplasticity alone would allow us to switch to another part of our brains. My son, like your subjects, has to devote considerable primary cognitive effort to what you do effortlessly and unconsciously. Equally, if you looked hard enough, there would be things they can do without thinking which you would find difficult. My guess is that if you go back to your subjects a year later, the improvements you report will be gone.
From a neurodiversity point of view, the central question here is one of power. You, as a neurotypical academic, have the power to force them (the neurodivergent) to conform to your way and your vision of what is human. You get to decide that turn-taking and looking people in the eye are important; they don't get a vote in the matter.
This, for me, is what makes the medical model of autism incompatible with human-computer interaction. The central message of human-computer interaction is always to put people at the center of the design process. The medical model of autism makes you prioritize the priorities of doctors and parents above the wishes of those involved themselves. This, for me, makes it less CHI-ish.
The central premise of Neurodiversity, is that, instead of forcing neuro divergent individuals to conform to the standard set by Neurotypical adults and academics, we should, instead seek to embrace diversity. We should seek ways of accommodating these differences.
It might be clearer with an analogy. As a woman, you are most likely to be earning 80% of your male equivalently educated peers. So one strategy your parents could have taken is the train you to look sound and behave like a man. You could have been forced to play games which trained you to stop acting like a woman.Then you could've passed yourself off as a man and had higher economic outcomes and a more successful life.
The alternative feminist strategy is to change the world to one, where differences and gender are tolerated, and in fact embraced. It doesn't matter that you're a woman and so you don't need to be trained to be 'gender' typical'. You can be good at what you want.
From a Neurodiversity point of view, perhaps you should be working on games which encourage parents to accept their Neurodivergent children for who they are, not want to train them to pretend to be normal.
A truly neurodiverse approach would be to look at the positive factors of autism and the things the children are good at and find ways to create value for these in the wider society.
I understand that this is not your current paradigm. The medical deficiency model is quite dominant. 95% of robot interaction and autism papers assume a 'you are defective let me fix you' model of autism.
However, in the spirt of academic debate, I wanted you to be aware there are alternatives.
If you going to send me a 'I'm sorry you think that way' email then don't bother as it would just be a sign I've failed to write persuasively and informative way.
Good luck with your future work.
