Dr Luke Beardon’s thought-provoking philippic on how we talk about autism and autistic people.
The Oxford Dictionary defines epistemology as: the theory of knowledge, especially with regard to its methods, validity, and scope, and the distinction between justified belief and opinion. So—what does this mean (rhetorical question) when it comes to the autism field, autism knowledge, and—most importantly—the autistic population. Already one could identify grey areas that require clear and transparent elucidation to ensure that shared knowledge is well understood. For example, what is the difference (another rhetorical question) between the autism field and the autistic population? I might create my own definitions—for example, I might suggest that the autism field includes anyone who is related to autism—be it a personal, academic, professional link; any link gives one permission to be considered part of that autism field. The autistic population, on the other hand, could be defined as those people who themselves are autistic. Simple, one might think. But (third rhetorical question—I’ll stop pointing it out now as I like things in threes) is it actually as simple as that? Seeing as we are pretty certain that autism is well misunderstood, not identified well across almost any groupings but even less so in intersections such as female, gender fluid, and ethnic minorities, then who even gets to claim that autism identification? Does self-identification count in the same way as medicalised diagnosis? Without fundamental answers to these questions much of the narrative around autism becomes cloudy before it even gets a chance to get going—and yet, equally, it seems to me that much of that same cloudy narrative simply gets taken as read—believed—and taken for granted as accurate information.
Take just one word from the above—identification. I use it deliberately, because I am very much against the accompanying connotations related to the word diagnosis. In fact, this is perhaps a good example of the whole purpose behind this concept of autistic epistemology and why it needs questioning. Let’s critique the word itself. A diagnosis in the health service insinuates the process by which one identifies what is wrong with a person. Does this mean, then, that an autism diagnosis identifies what is wrong with an individual? If so, this gives a clear message that being autistic is somehow wrong. Going further, a diagnosis is often associated with further investigation as to how to fix or cure the diagnosed problem. Does this mean, then, that autism could or should be fixed or cured? My view is that these concepts of fixing or curing are dangerous, not to say severely insulting. So why do we continue to have this narrative?
Just while I am delving into the notion of a diagnostic journey, consider the damage that can be done ‘simply’ by referring oneself for an autism diagnosis. I hear far too many stories of adults who have gone to their GP for a referral only to be turned away at this initial stage, usually because the GP in question has based their autism understanding on outdated understandings that should have no place in current society. Some examples of real-life ‘autism rejections’ include:
- You can’t be autistic because you can maintain eye contact with your boyfriend
- If you are autistic then you must only be mild, so I don’t think it’s worth getting a label
- You are too successful as a self-employed adult which goes against being autistic
Society continues to be somewhat obsessed with eye contact—suffice to say, take it from me, one human being cannot tell with any precision where another human being is looking. Looking at a person’s nose, mouth, forehead—all of these give the distinct impression of eye contact. Besides all of this, having wonderful eye contact should never preclude from an autism identification anyway—it’s a myth that autistic folk cannot ‘have’ eye contact.
Mildness is a term that should never be associated with autism in any way, shape, or form. In fact, almost every person I have ever met who has been told that they can ‘only be mildly autistic’ has essentially felt gaslit in no uncertain terms. There is absolutely nothing ‘wrong’ with being autistic—but at the same time, being autistic in current environments often leads directly to traumatic experiences that are anything but mild. I often refer to my so-called golden equation: autism + environment = outcome. Seeing as one cannot change being autistic, if the outcome needs to change then the environment needs to alter. And a reduction of questioning the lived experiences of autistic people could be a pretty good start. Just as a quick aside—is there anything more ridiculous than telling an autistic person you don’t look autistic to me? Actually, on a par with this is the classic well, you don’t seem very similar to my friend’s daughter who is autistic. Imagine showing someone a picture of your pet cat, and the response is ‘are you sure that’s a cat, it doesn’t look anything like one I met a couple of years ago’. Now imagine that same sentiment being directed at an autistic person who has taken the brave decision to disclose… oh, and by the way, to finish this section, autism is a genuine identity. Being dismissed by folk telling you it’s just a label can be insulting.
The third real-life example which associates being autistic with the inability to be either successful or self-employed sums up the lack of genuine autism knowledge inherent in some sectors of the community.
Following the ‘diagnosis’ one is labeled as having an autistic spectrum disorder. Three little words, eight seemingly innocuous syllables. Autism, from the Greek autós and ism meaning ‘self’ and ‘state of being’. The inference, or at least the common understanding, being that to be autistic is somehow to be centered on self—egotistical and inward looking. This is misleading at best. Many autistic people are quite the opposite—they’re incredibly outward looking, which is why so many autistic folk make great advocates for others while neglecting to put themselves first. Then there’s the word spectrum. I won’t go into a diatribe here, but suffice to say that the concept of a spectrum and the two-dimensional symbolic representation going from mild to severe is so littered with misleading rubbish that it would take an entire recycling centre to clean it up. Lastly, disorder is perhaps the most obvious slur of the three words. Society is literally suggesting that autistic people are disordered human beings. How this is even considered to be in the slightest bit appropriate is quite beyond my comprehension. It would be laughable if it were not so damaging.
Dipping one solitary toe into an ocean of autism-related narrative and epistemologies appears to highlight that continuing to believe and invest in misleading and harmful concepts will only damage the autistic population. Back in the 70s, people were taught about micro-aggressions led by Chester Pierce who wrote black-white racial interactions [that] are characterized by white put-downs, done in an automatic, preconscious, or unconscious fashion. I would suggest, very strongly indeed, that what Pierce was writing about back in the 70s in relation to black narratives could easily be translated into today’s narrative about autism, along with all the damage as a result. Turning that unconscious bias into a conscious appreciation as to how harmful stereotypes, tropes, and misleading information about autism can be is an essential step if we as a society are going to cease the harm we are doing to the autistic population.
I have only tickled the tip of the highest point of a very deep iceberg with this think-piece. And yet, already, it raises serious questions around the whole of the autism narrative, and the potential damage it might do. I’ve not even referred to the extraordinary discriminatory notion of neuronormativity—which is the belief that one particular way of neurology is somehow superior, or the right way of being or functioning. And yet just a swift review of autism diagnostic criteria demonstrates just how rife such neuronormative values are in autism narratives. Is it any wonder that autistic children often grow up with feelings of inadequacy? Or that autistic adults have to mask their autistic authenticity, despite all the damage associated with doing so?
Finally, going back to the whole concept of disingenuous ‘knowledge’ and the damage that can be done, if I may be inexcusably hubristic and insular, I will finish with the opening words I wrote in my first solo book which were written as a type of warning against autism misinformation: never believe anything you read about autism.