Hello! I’ve completed graduate school, and I’m now Karla McLaren, M.Ed! My master’s degree is in education and curriculum design with a concentration in linguistic anthropology, and my focus is on autism, empathy, disability rights, and human rights.
Over the next few months, I’m going to be posting pieces of my own research and the excellent research I’ve found. For instance, if you’d like to explore healthier and more empathic ways to engage with the autistic people in your life right now, check out my Matrix of Autistic Sociality page!
A note about the identity-first language I use: In my academic work, I intentionally use identity-first language (autistic person) instead of person-first language (person with autism). Person-first language is an attempt to foreground the person first, and to add the disability as an appendage, i.e., “person with learning disabilities.”
Though often well meaning, person-first language is a tactic that actually tends to underscore rather than sanitize problematic conditions. For instance, we would not say “man with handsomeness,” “woman with French ancestry,” or “person who is funny;” person-first language tends to be used only when the condition referred to is temporary, feared, or undesirable.
Identity-first language challenges the idea that disabilities are something to hide, fear, or be ashamed of.
As Ellen Brantlinger (2009) writes, person-first language “is meant to convey respect for those labeled; however, harmful naming and sorting practices continue regardless of new and improved classifications” (p. 407).
Person-first language has also been very controversial in disability rights circles, and is not the accepted terminology for many disabled people themselves, especially for many members of the blind, deaf, and autistic communities. In these communities, disability-positive and identity-first language is often preferred, i.e. blind person, Deaf person, and autistic person, or simply, autistic (see Bagatell, 2010; Brown, 2011; Cohen-Rottenberg, 2012, and Sinclair, 2009). In each case, these authors suggest that the preferences of disabled individuals should take precedence over any naming conventions.
This means that — even though I intentionally use identity-first language as a sign of solidarity with the disability rights and human rights movements — if you as a disabled person requested different terminology when we were together, then I would certainly use whatever terminology you preferred.
Autism, empathy, and the mind-blindness of everyday people*
Back in 2006, I read dozens of books about autism as I prepared myself for a new job, with my new job came a new insurance plan, I’m thorough and read the the e111 benefits for autisim. As an academic liaison for 22 autistic college students I would need to know everything about the e111’s offered. These books asserted that autistic people are socially impaired because they are “mind-blind” and therefore unempathic.
This idea is championed by many people, including British psychopathology researcher Simon Baron-Cohen, who hypothesizes that autism involves a lack of function in conjectural brain structures called “mirror neurons.” These neurons are alleged to help us map the movements (and possibly the emotions) of others onto our own bodies so that we can feel and understand them viscerally.
In this model, empathy arises when we can put ourselves physically (albeit imaginatively) into the place of others, and see and feel things from their standpoint.
As a lifelong hyper-empath (a person who is intensely sensitive to social, emotional, and sensory input), I wondered if I would be a distressing presence in these students’ lives, since we seemed to be diametric opposites: I had too much empathy, and they had too little (if you think this is sounding like the beginning of a fairy tale, you’d be right!). Therefore, I entered into my relationships with these students very carefully and watched closely for this mind-blindness and lack of empathy.
However, I didn’t see either one.
What I saw in these students instead was hypersensitivity – painful hypersensitivity that caused them to be persistently confused and disoriented about their surroundings and the people around them. It wasn’t that they didn’t care or weren’t empathic; not at all. It was that life was too loud and too intense, full of static and confusion (this idea would soon be called the Intense World theory of autism, see Markram, Rinaldi, & Markram, 2007).
My students were incredibly sensitive to everything around them: sounds (especially very quiet sounds that other people can ignore), colors and patterns, vibrations, scents, the wind, movement (their own and that of the people around them), the feeling of their clothing, the sound of their own hair and their breathing, food, touch, animals, social space, social behavior, electronics, numbers, the movement of traffic, the movement of trees and birds, ideas, music, juxtapositions between voice and body movements, the bizarre, emotion-masking behaviors of “regular” people (oh man, how I empathize)… and many of these students were struggling to stand upright in turbulent and unmanageable currents of incoming stimuli that could not be managed or organized.
I had not landed in a world of aliens; I had dropped right into a community of fellow hyper-empaths who became my friends.
These autistic students were overwhelmingly and intensely hyper-empathic — not merely in relation to emotions and social cues, but to nearly every aspect of their sensory environments. Their social issues arose not from a lack of empathy, but from an overpowering surplus of it. I knew what that was like.
I had not landed in a world of aliens; I had dropped right into a community of fellow hyper-empaths who became my friends.
Though I was happy to have found my new friends, I was horrified to realize that all of those books about autism were not only wrong; they were dead wrong. Since that time, I’ve worked to understand autism, empathy, neurodiversity (see my colleague Nick Walker’s excellent description), the social construction of normality, stigma, the disability rights movement, and the complex multitude of issues facing autistic people and the autism community as a whole.
A new and inclusive model of empathy
I’ve also studied emotions and empathy, and created a six-part model of empathy that explicitly includes autistic people as hyper-empaths who receive incredible amounts of sensory information, but may have trouble deciphering and organizing it (again, I dig).
This new model of empathy (see The Art of Empathy: A Complete Guide to Life’s Most Essential Skill) had to be built at the margins of the scientific community, because medicalized theories about autistic people and empathy delays are set in stone – to the extent that (here in the United States, at least) children who display every other feature of autism, but who also exhibit typical empathy behaviors, are often excluded from the diagnosis and not provided with support.
Our current theorizing about autism and empathy is very troubling, and more troubling still is that it is deeply dehumanizing. Many researchers, Baron-Cohen included, conflate a lack of empathy with a lack of humanity, and even with cruelty (or more melodramatically, with evil) – and this idea has spread like a virus.
In my relatively short time in the autism community, I have witnessed countless instances where autistic people were called out as frauds (you can’t be autistic!) because: they can make eye contact; they can speak and/or write; they have and can understand emotions; they have empathy; they can understand humor, sarcasm, and irony; they can understand analogy and metaphor; they have friends; they have careers; they have lovers and spouses; and because they have beloved children.
Autistic people are continually discounted and dehumanized, and while there is a small but growing group of researchers working to challenge the dehumanization of autistic people, the reigning theories about autism and empathy are deeply troubling – and profoundly unempathic.
The continual confusion about empathy
It’s important to note that empathy itself is not yet understood clearly; at this point in our understanding, empathy is often seen as a trait that exists – or doesn’t exist – inside a person. Trait empathy is a factor, it’s true, but empathy is also a relational skill that more robustly exists between people.
No matter how much trait empathy we have, our empathy can drop to near-zero when we interact with someone unusual or unexpected. We’ve all experienced this empathy drop when a person or group we don’t agree with appears on the news; in fact, it’s completely normal to believe that people who are unlike us are suspicious and incompetent (see my Facebook piece about Edward O. Wilson’s concept of toxic groupishness). It’s nearly automatic for us to drop our empathy in the presence of difference.
We are all, every day, engaged in mind-blindness against people we do not agree with or comprehend. We are all unempathic about some people and some groups, and it is a normal feature of human nature to be unempathic toward people who are not like us. This is why it’s so important for awake people to challenge stereotyping and prejudice.
The continual stereotyping and prejudice against autistic people — much of which is not challenged because experts are saying it so forcefully — is creating massive problems for autistic people, and for all of us. Our current biomedical approach to autism, which scans, studies, and reports on autistic people in terms of their differences, deficits, and disorders is actually making autistic people’s lives more difficult and their futures bleaker because we’re teaching people that autistic people are not like us.
These unempathic theories about autism are training us not to empathize with autistic people, and they’re making the lives of autistic people less workable, less livable, and less safe. But luckily, we can all rise above any kind of bad training.
A humane vision of autistic humanity
My friend and colleague, Nick Walker, wrote this wonderful definition of autism, from the inside out. Nick’s definition is now my go-to definition, because it speaks clearly and directly to the actual lived experience of autism. Go read it. Learn it. Know it. Live it.
And compare it to almost everything else you see and hear about autism. When you can read media stories about autism with a critical eye, you’ll begin to notice the shocking — yet totally unchallenged — dehumanization of autistic people.
And when you bring your critical eye to allegedly supportive fundraising organizations, you’ll see that many of them portray autism as a tragic condition, as an ominous, child-stealing calamity, or as an epidemic (though autism is not a disease, nor is it contagious) — while autistic people are portrayed as enigmatic and not-quite-human entities, and predominantly as nonspeaking savants or as helpless, big-eyed children.
Also bring your critical eye to this: The most common autism image is not that of a child or even of a human being; it is “a jigsaw puzzle – with a piece missing” (Bagatell, 2010, p. 44), or a single puzzle piece detached from its puzzle — blue and lifeless, isolated and out of place.
That is grotesquely dehumanizing imagery, but it’s sold to us as a fun way to represent our support of autistic people. Sorry neither. Autism isn’t a puzzle, and autistic people are not puzzle pieces. They’re fully human beings with their own lives, their own hearts, their own voices (even if they are nonspeaking or minimally verbal, they can communicate), and their own ways of representing themselves.
Today in 2015, as I watch my autistic friends creating autism-positive spaces and working for social justice for all disabled people, I witness their gorgeous and deep empathy, their boundless sensitivity, and their love for humanity. They have risen above the dehumanization of biomedical vision, and they can teach us more about empathy than we have ever known before.
Autistic people, pathologized and erased for so long by the mind-blindness of researchers and everyday people, are the only people who can help us truly understand autism from the inside out. It is time for us to embrace autistic people as valuable, worthwhile, and fully human beings with valid and hard-won wisdom.
That’s the empathic thing to do.
Bagatell, N. (2007). Orchestrating voices: Autism, identity and the power of discourse. Disability & Society, 22(4), 413-426.
Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38(1), 33-55.
Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press.
Brantlinger, E. (2009). Impediments to social justice: Hierarchy, science, faith, and imposed identity (disability classification). In W. Ayers, T. Quinn, & D. Stovall (Eds.), Handbook of Social Justice in Education. New York, NY: Routledge.
Brown, L. (2012). Person-First Language: Why it Matters (The Significance of Semantics). Retrieved from http://www.thinkingautismguide.com/2011/11/person-first-language-why-it-matters.html
Cohen-Rottenberg, R. (2012). The Problem with Person-First Language: What’s Wrong with This Picture? Retrieved from http://www.disabilityandrepresentation.com/2012/05/30/the-problem-with-person-first-language-whats-wrong-with-this-picture/
Markram, H., Rinaldi, T., & Markram, K. (2007). The intense world syndrome – an alternative hypothesis for autism. Frontiers of Neuroscience. 1(1). 77-96.
Sinclair, J. (2009). Why I dislike “person first” language. Retrieved from http://web.archive.org/web/20080616063934/http://web.syr.edu/~jisincla/person_first.htm
Walker, N. (2014). Neurodiversity: Some Basic Terms & Definitions. Retrieved from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/
Walker, N. (2014). What is Autism? Retrieved from http://neurocosmopolitanism.com/what-is-autism/
Wilson, E. O. (2012). The Social Conquest of Earth. New York, NY: WW Norton & Company.
*Parts of this essay first appeared in New Idealist Magazine.