I have recently become more and more interested in the relevance of an epistemological question for its consequences for social and political philosophy, namely: To what extent are certain types of knowledge only accessible to those who have had certain experiences? And how do one’s values, judgements, etc. change (or not) after having lived through certain experiences? Intuitively, it seems so obvious to me that some sorts of knowledge (or perhaps ‘understanding’ is a better word?) cannot, or can only in an extremely difficult way, be reached without having had certain relevant experiences. We can all think of concrete examples in our own lives (e.g. how one’s views on death and sorrow change if for the first time one loses a very dear loved one; how views on human vulnerability change if one becomes a parent etc). But this also holds for knowledge/understanding of less personal and more social/political issues. For example, my colleague Constanze Binder once lived with Indigenous women in Oaxaca in Mexico, and recently wrote a short piece about how their practice to switch roles between men and women one day a year (on international women’s day) has lead to most progress in the fulfillment of their demands. Understanding can be an important factor in creating willingness to chance.
How does this question of knowing and understanding applies to autism?
People with autism often say that the world doesn’t understand them; similarly, parents of children with autism have repeatedly said that other parents don’t have the beginning of an idea of what it is to raise a child with autism. With autism in particular I feel that the science-based books or information leaflets that try to explain in general terms what autism is, give very limited insights in how it is to have autism, or live together with a person who has autism. Books that take a narrative approach, and try to tell a story, may be more effective; as may be the case for films (as long as they are well made, on which see my next post). Parents and other carers of children with autism thus have a few resources to resort to if they want to try to create more understanding.
But creating an understanding of what it is living with autism seems much more difficult. For one thing, every person with autism has very different aspects of it: some have oversensitive senses which other don’t have (or some have oversensitive touch while other have oversensitive hearing); some have serious speech problems which others (Aspergers) have not; some are very introvert, while others are not (in fact, some people with autism may have the opposite, that is: they talk with everybody without any reservations); some have ‘odd’ behaviors (hand-flapping, lamp-cuddling) which others have not; some have serious problems with their fine motorical skills which others have not; some may have strong anxieties and ‘irrational’ fears, which others have not; and one can go one like this. Moreover, autism often (but not always!) comes with comorbidity: severe cognitive disabilities or ADHD, for example.
Apart from books and films, I know of one other powerful attempt at trying to make the neurotypical person experience what it is to have autism: het hoofdkwartier (literally: the headquarter). Het hoofdkwartier is a project run by the Leo Kannerhuis (a center specialized in autism in the Netherlands) which has been running since June 2006. It is a gigantic iron head (my estimate is that it is about 4-5 meters high), which has two openings. If one enters the head, one sees a number of television screens. The task is to take a headset, and try to make sense of the stories that are told on the television screen. It is absolutely bewildering. One is bombarded with fragments of sentences and other sounds. The challenge is not so much their level, but much more their fragmented nature; the visitor does understand half of the stories that are told, but there is so much noise that it is very heard to piece the stories together. After about twenty minutes, the visitor has made a full circle, and can leave the Headquarter.
I visited the Headquarter in 2010, and I still recall coming out of the Headquarter and feeling completely flabbergasted. Literally. That world that was presented to me was not only very hard to follow and understand, but it suck my energy being in there, trying to understand what people on these television screens were trying to tell me. And realising that this is how people with autism, including my son, have to cope with the world, was hard. Visiting the Headquarter was disturbing, but also directly useful, since it helped us in improving our parenting. For example, we realized much better that we had to look for strategies to protect him from begin bombarded by sounds, and that we had to intensify our efforts at communicating as clearly as possible. So we now regularly allow/encourage our son to use a headset (to block out outside noises), also in settings where this is considered ‘socially inappropriate’; or we physically take him out of a situation that is exhausting him (family gatherings is a good example – way too much noise and voices and lines of conversations).
Unfortunately, as of January 1st, the Headquarter can no longer travel to locations, due to subsidy cuts. But I hope that Leo Kanner Huis finds a place which is easy to visit, where they can build it on a permanent basis, which should be less costly. It would be a very good place to visit for anyone who wants to better understand how it must be living with autism.