Representing Autism Representation

Over the past few weeks, I've thought a lot about various forms of autism representation in media. My own blog is, itself, a form of autism representation. Because of this, I figured it would be useful to talk about various forms of autism representation as a big part of my blog. Originally, I had planned to go through a few of these examples individually with a blog post each, but then I realized that it would be most useful to talk about autism representation in media as a whole: what it means to represent autism well, how to do it, and how others have failed in this arena. This is a pretty complex topic, so this week's blog post isn't quite done yet, but I am making good progress. So far, I have come up with a few criteria for what makes autism representation good. Participation, or inviting input from the autistic community when creating autistic characters. Research, which includes both learning about autism as a medical condition and learning about the lived realities of autistic people from autistic people themselves. And finally, Respect: Acknowledging that autistic people's experiences are valid and equally valuable experiences of humanity. This means that autistic people are not made into caricatures or used only as plot foils for non-autistic characters, but that they are represented as complete characters of their own accord.

Too often, media representation of autism can be categorized either into the "Tragedy rhetoric" or the "Prodigy rhetoric." The tragedy rhetoric is based off the assumption that autism is a disease, a mistake, and that its "sufferers" are useless, except for when they can be used as plot devices to develop non-autistic characters. The prodigy rhetoric, on the other hand, uses the stories of gifted autistic people (who are usually white males) to inspire non-autistic people, implying that all autistic people must be extraordinarily gifted in order for others to appreciate them. Often, these character's autistic traits are only overlooked because of what they can contribute with their big brains. Examples of the tragedy rhetoric can be seen in the movie "Music" that came out recently, and the prodigy rhetoric can be seen in tv shows such as "The Good Doctor." 

Many of these terrible representations of autism don't receive any input from autistic people, or anyone in the disability community. In fact, nearly 95% of disabled movie characters are played by nondisabled actors, and this is no different for autism (Anderson, 2016). That's one of the main reasons I decided to make this blog. The Autistic Self-Advocacy Network, one of the biggest autistic-led organizations, has a motto "Nothing about us without us," and it's one that I would agree with (Autistic Self-Advocacy Network, 2011). Basically, this means that it is vital to include disabled people in conversations about their disability, whether that is in treatment suggestions, policy decisions, or in media representation. 

This idea of Self-advocacy is super important when we think about this week's topics of self-determination, motivation, and autonomy. As a community, people with disabilities are often told that we are not experts on our own conditions, that we don't know enough to make decisions about what we can or cannot do, and our motivations are often assumed in the negative. I mentioned this in class, but within the disability community, the idea of presuming competency is really vital in respecting the rights of people with disabilities. Presuming competency means that you trust someone to know their own limits, to know what they are capable of, and to let them try new things even if you think they might fail. Instead of making decisions on their behalf, involve them in the decision-making process, take their thoughts and opinions in mind, and give them the benefit of the doubt before shutting down their ideas.

For better or for worse, my late diagnosis meant that I didn't have a lot of people telling me that I couldn't do things, but my siblings were diagnosed earlier than I was, and both of them have had negative consequences from people assuming things about their abilities, their thoughts, and their actions without even bothering to ask them what they thought. This is a pattern that can be repeated in all spheres of life, and has the effect of limiting the autonomy of people with disabilities.

When it comes to medical conditions, often it is assumed that practitioners are the teachers and the patients are the learners, but our experiences as occupational therapists are not the same thing as the lived experiences of people with those conditions, and thus, our approach should be one of mutual learning and striving to understand in order to better help the patient. It also helps that when a patient is more involved in their own therapy process, they are more determined to follow it, and their motivation will be much higher if the goals of therapy match their own goals. But this can't happen if we are stuck in our own self-confidence, unwilling to learn from our patients. One twitter user summed this up perfectly in the post below. 

Doctor: Don't confuse your google search with my six years at medical school.
Patient: Don't confuse the one hour lecture you had on my condition with my 20 years of living with it. (Greenhalgh, 2018).

Especially when it comes to disability representation in media, it is easy to become convinced that we know everything there is to know about a condition, when in reality, we only know enough to be dangerous, and we can use that knowledge to make assumptions and limit the autonomy of people with disabilities. This is where the idea of Cultural Humility can come into play, and it is just as important here as it is for interacting with people from racial and ethnic minorities. As occupational therapists, we should be eternally learning, striving to understand the realities of our patients, respecting their thoughts and opinions, presuming competence, and listening to their input during treatment. All of these things, when taken together can help increase our patient's self-determination, motivation, and autonomy when it comes to engaging in therapy, and in life overall. 

References:

Greenhalgh, T. (2018, May 26). These two sentences are probably the foundation for optimal medicine. [Review of These two sentences are probably the foundation for optimal medicine.]. IFunny. https://ifunny.co/meme/doctor-don-t-confuse-your-google-search-with-my-6y-yf2ZH4lK7

Anderson, T. (2016, November 2). Disabled actors and advocates plead to Hollywood: “Give us a chance, please!”. Los Angeles Times. https://www.latimes.com/entertainment/movies/la-et-mn-disabled-actors-hollywood-diversity-20161101-story.html#:~:text=The%20study%20found%20that%20despite%20those%20with%20disabilities

Autistic Self Advocacy Network. (2011). Autistic Self Advocacy Network. Autistic Self Advocacy Network. https://autisticadvocacy.org/