April 2nd is World Autism Awareness Day, a day when we are called upon to raise awareness of autism. I have been working in the last months on a paper on how to [philosophically] conceptualize the well-being of people with autism/autistic people*, but alas, that project is not finished yet. But if you’re interested in new philosophical work on autism, check out this book that Jami L. Anderson and Simon Cushing edited, which contains some interesting chapters. And check out this interesting blog post by Richard Ashcroft, on a workshop that Raffaele Rodogno organized last year, which was absolutely fascinating for the reasons that Richard spells out.
I want to raise two issues: one about the diversity of people with autism, and the possible epistemological consequences.
Many people believe that autism is a disability that is somewhat ‘homogenous’. They have seen Rain Men or have friend who has a friend who has a child with autism, and then extrapolate from that to the general category ‘autistic people’. They have a colleague with Asperger’s and therefore assume that Asperger’s is always a mild form of autism. Or they belief that people with autism are less emotionally sensitive, or less interested in interacting with others, or less interested in having friends.
All of these assumption are wrong.
The problem behind these views is the denial of the fact that if one knows one person with autism, one knows one person with autism. People with autism differ dramatically.
Even for us, neurotypical people who share their lives with autistic people (or those of us who have some mild autistic traits and hence are seen as part of the broader autism phenotype), it is often surprising how heterogenous autistic people are. This struck me last Summer when I volunteered a day at my son’s school (which is a special needs school for autistic children). That day, I saw and interacted with all the children, and was struck by how different they are in how they interacted and behaved. I discussed this with some other parents who volunteered and they agreed.
So surely it must be even harder for the neurotypicals who don’t share their lives with autistic people to grasp the heterogenous nature of autism. There are a few famous autistic people out there – whether fictious (like Rain man) or real (like Temple Grandin), and they have a disproportionate effect on how we perceive and conceive autism. Yet as Cynthia Kim writes in this brilliant post, “autistic people are as varied as typical people”. They are not [all] going to grow up to become Temple Grandin II.
Now this brings me to the epistemological question. Why is it so hard for most neurotypical people to understand the genuine nature of autism, and not get stuck in stereotypes and simplistic views? Why is it so hard for neurotypical people to see the complexities?
An uncharitable (but therefore not necessarily untrue) explanation could be that they are not interested. There is only so much time in a day, and there are many disabilities, disorders, illnesses, conditions, cultural and social differences, religious diversity, etc – that it’s unsurprising that we tend to know more about those dimensions of human diversity that are relevant for us or those present closely around us. Yet the complexity in the case of autism may be deeper, and therefore also of special interest to philosophers working on situated epistemology or standpoint theory.
My hypothesis is this: first, we are still to a large extent in the darks about what autism exactly is. We are not even sure whether all those we currently label ‘autistic’ should be grouped together, or whether the most sensible classification would be very different.** Second, even if we stick to current diagnostic criteria, they are always formulated at high levels of abstraction and a person with autism does not need to display all of these features in order to have autism. So, for example, my son really likes to interact with people, and doesn’t like to be on his own – a feature that doesn’t fit with the views about autism most people hold. Third, in order to understand people with autism, one needs to have the right attitudes (such as practicing hard in listening and observing, trying to be non-judgmental, not reasoning based on neurotypical standards,… ). Yet in addition one also has to be able to see how the abstract characteristic of autism translate, in radically different ways, at the concrete level of behavior, needs, experiences, and so forth.
And here’s the crux: I don’t think one can learn this from the books. Books help, but one needs narratives and experiences. One needs to be part of it.
So what to do if you are a neurotypical person who isn’t professionally working with people with autism, or who doesn’t share your life with an autistic person? There are interesting blogs, such as Musings of an Aspie, or autobiographical accounts, such as Aquamarine Blue 5, or The Reason I Jump. These could work as a starter.
I seem to be somehow be repeating what I wrote here last year – only that my experiences in the last 12 months have strengthened my belief in the conclusions: it’s really hard to understand autism if you are not part of it. There are ways to become part of it, but they all give partial and limited epistemological access. So anyone serious about understanding autism is facing a steep hill ahead of them. But that should not deter you from not giving it a try.– – – – –
- The Dutch autistic community, as I know it, prefers the term ‘people with autism’ over ‘autistic people’ to signify that autism is not the uniquely defining characteristic of those people; they find ‘autistic people’ too essentialising. Yet I have heard other autistic people arguing that it is a matter of reducing stigma to use the term ‘autistic person’, since it should not be seen as a disability, but rather as a matter of (neuro-)diversity. In this view, calling oneself ‘an autistic person’ is seen as a matter of accepting who one is, and hence as part of what one could describe as a societal/political strengthening of the position of autistic persons. In my view both arguments have some plausibility, and hence I am using both terms interchangeably.
**At the level of behaviour, there are also striking similarities between some behavior or character traits that are characterizing some autistic people and some people with ADHD; and I recently read unpublished work by a doctoral student on dyslexia which struck me as strikingly similar too. So who knows whether 100 years from now we will classify this all very differently.