Being autistic in our ableist societies is full of cruel ironies. One of the cruelest and most damaging is the myth of the unempathetic autistic. We are portrayed as robotic savants in TV and movies, reduced to an unfeeling trait. Whenever there’s a school shooting, out come the autism and mental illness tropes. Empathy myths marginalize and criminalize us.
One of the hallmarks of autism is sensory overwhelm. Many of us are hyper-sensory to the point of overload, meltdown, and burnout. The intensity of sensation is a flood. The world is perceived in high fidelity. We are hypersensitive to our environment, other people’s energy, and the emotional climate around us.
Many experience this as hyper-empathy, an exhausting flood, a painful over-abundance of empathy that we must tamp down to avoid meltdown. We’re not hypo-empathic; we’re hyper-empathic to the point of distress. Some describe their empathy surges as automatic, instinctual, and uncontrollable.
You might not be able to see this flood from the outside. Autistic folks can have difficulties with verbal expression and communication, particularly in neurotypical social settings. The overwhelming empathy is corked up inside. Just because you can’t perceive it, doesn’t mean it’s not there.
There’s also the matter of titration. How much of the empathy flood is appropriate to share in a given social situation? What concentration of empathy does the moment call for? I have trouble deciding what is enough, so I usually keep it in. Autistics often comment that sharing and empathizing is easier with other autistics than with neurotypicals.
Empathy and communication go two ways, and neurotypical folks haven’t shown much interest in meeting neurodivergent folks halfway. Reciprocity is a basic tenet of social skills, and neurotypicals are often incapable of reciprocity outside of their usual scripts. We autistics are called mind-blind by folks who have made zero effort to understand and empathize with neurodivergent minds, who are ignorant of alternative matrices of sociality.
Try this empathy exercise. You’re in a noisy social situation. You are hyper-sensory, anxious, and shy. You are mainlining sights, sounds, scents, and textures while navigating social cues and assumptions made by and for minds different than yours. Now, exchange social styrofoam with strangers who refuse to understand or think beyond their own minds.
We are tired of being called unempathetic monsters by the actual monsters, monsters like Ole Ivar Lovaas—the twisted father of Applied Behavior Analysis (ABA) and conversion therapy. He applied his abusive, torturous techniques to autistic kids and “sissy boys” to make them “indistinguishable from their peers”. He had little regard for their humanity—they were engineering projects.
“The fascinating part to me was to observe persons with eyes and ears, teeth and toenails, walking around yet presenting few of the behaviors that one would call social or human,” he wrote. “Now, I had the chance to build language and other social and intellectual behaviors where none had existed, a good test of how much help a learning-based approach could offer.”
He explained to Psychology Today, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense- they have hair, a nose, and a mouth- but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
This mind-blind, neurotypical charlatan still influences popular conceptions of autism. There are many like him who abuse autistic people, often for money as part of their jobs. “Pinch the nose to release the jaw” and spraying ammonia in mouths are failures to recognize another’s humanity.
Who are the unempathetic monsters? Consider a mirror.
- Why I Left ABA | Socially Anxious Advocate
- I Abused Children For A Living – Diary Of A Birdmad girl
- I Abused Children And SO DO YOU: A Response To An ABA Apologist – Diary Of A Birdmad girl
- I’m an ABA therapist, I’ve noticed a lot of the adult autistic community speaking out against ABA – neurowonderful
- I’m sorry, but that’s not earning your token
- ‘Cardgate’ Scandal Uncovers Widespread Disrespect of Autistic People | NOS Magazine
- The Misbehaviour of Behaviourists
- Applied Behaviour Analysis – Personal Reflections
- Read what one autistic adult had to say the day she realised that the therapy she went through as a child was actually ABA.
- Mindset Marketing, Behaviorism, and Deficit Ideology
- The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults
Are autistic folks unempathetic, or do you, society, have an underdeveloped sense of reciprocity and justice?
To be defined as abnormal in society is often conflated with being perceived as ‘pathological’ in some way and to be socially stigmatised, shunned and sanctioned. Then, if there is a breakdown in interaction, or indeed a failed attempt to align toward expressions of meaning, a person who sees their interactions as ‘normal’ and ‘correct’ can denigrate those who act or are perceived as ‘different’ (Tajfel & Turner, 1979). If one can apply a label on the ‘other’ location the problem in them, it also resolves the applier of the label’s ‘natural attitude’ of responsibility in their own perceptions and the breach is healed perceptually, but not for the person who has been ‘othered’ (Said, 1978).
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. 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.
I’m also autistic. And public perceptions dictate that autistic and empathetic shouldn’t go together.
The popular myth that all autistic people are socially withdrawn and unempathetic - like the teenage protagonist in the novel The Curious Incident of the Dog in the Night-Time or the undiagnosed but stereotypical representation of The Big Bang Theory‘s Sheldon Cooper - hurts the entire autistic community.
The truth, unsurprisingly, is that you can be empathetic (even highly so) and autistic. You can be extroverted and autistic. You can be outgoing and autistic. You can be a people person and autistic. Of course there are autistic folks who are introverted as well, but as the saying goes, “If you met one autistic person, you’ve met one autistic person.” Ascribing generalizations to a diverse group of people only serves to harm us.
According to the Autistic Self Advocacy Network (ASAN), “The idea that autistic people lack empathy is a damaging stereotype that isn’t supported by research. Self-advocates have consistently said that we have different communication styles from others, not a lack of empathy.”
Physicians assumed I couldn’t be autistic and also as emotionally available as I am, and they often misunderstood traits of autism — special interests, oversensitivity to lights and sound, autistic meltdowns and shutdowns — as signs of depression, anxiety, and obsessive-compulsive disorder.
At the same time, my different communication styles, coupled with my pronounced empathy, made it harder for me to figure out my place in the world.
“People’s reactions to me have so often been that I’m either inappropriately or unrealistically empathetic, and partly that’s because our society’s concept of masculine identity is so invested in a toxic denial of empathy in boys and men,” says autistic children’s book author Mike Jung, who is also Korean American.
The myth of the unfeeling autistic person has societal impacts that go beyond the personal as well. In social settings, I’ve been afraid to admit that I’m autistic, because I didn’t want my friends to fall into the trap of thinking that I’m unfeeling and don’t know how to love. More broadly, this idea is often, troublingly, used to criminalize the community.
Historically, there has been much debate about the extent to which autistic individuals experience empathy. I am using the phrase “autistic individuals” rather than “individuals with autism,” per the recommendation from the Autism Self-Advocacy Network. Recent studies indicate that while autistics may experience and demonstrate empathy in different ways from neurotypicals, they do indeed experience it, sometimes to intense degrees. The debate is well summarized here.
Throughout this discussion, I have observed a curious and glaring omission: what about how and whether neurotypicals empathize with autistics? One of the basic tenets of social skills is reciprocity, an attunement to the back and forth nature of social interactions. If we are examining how well autistics display empathy towards others (the majority of whom are neurotypical), it is only fair to ask how and whether neurotypicals are extending the same courtesy back.
In order to further develop empathy for autistics, I ask myself: what if I had to perform the complex tasks I do every day in the presence of intensely aversive sensory stimuli, such as the airport? How would that affect my ability to focus and maintain a calm, alert state rather than feeling anxious and overwhelmed? This is relevant because every day, when an autistic child attends school, they may be entering an environment they find as overwhelming as I find the airport/airplane. It’s easy to see that being expected to perform well in the presence of aversive sensory stimulation quickly puts one into a fight or flight state, which is not ideal for academic or social-emotional learning.
Some excellent work has been done on empathy and autism. Damian Milton‘s ideas on The Double Empathy Problem are fascinating; recognising that it is as difficult for non-autistics to empathise with autistics, as it is for autistics to empathise with non-autistics.
It is finally being understood that many autistics don’t lack empathy, some may have more empathy than average, it’s just not shown in a non-autistic way. Autism doesn’t mean not feeling things deeply. It doesn’t mean not caring about others. We are not less human or less loving, we just show it in different ways.
The more time I spend on this Earth, the more I realise that true empathy needs an excellent imagination to go with it.
Growing up, people did not empathise with my sensory issues, because they could not imagine someone else feeling something they did not.
There have been times when friends have been blasé about something I’m hurt by, only to apologise later on in life when they have finally experienced the same, and can now understand my feelings. They were not able to imagine how it felt without direct experience.
Which is why people struggle to empathise with autistic people’s experience. They will never share those moments of complete sensory overload or social difficulties in the same way.
There is a persistent stereotype that people with autism are individuals who lack empathy and cannot understand emotion. It’s true that many people with autism don’t show emotion in ways that people without the condition would recognize.
But the notion that people with autism generally lack empathy and cannot recognize feelings is wrong. Holding such a view can distort our perception of these individuals and possibly delay effective treatments.
Empathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination. We all need to work on imagining things we have not been through.
Many of these individuals said they experience typical, or even excessive, empathy at times. One of our volunteers, for example, described in detail his intense empathic reaction to his sister’s distress at a family funeral.
People with alexithymia may still care about others’ feelings, however. The inability to recognize and understand anger might make it difficult to respond empathically to anger specifically. But alexithymic individuals know that anger is a negative state and are affected by others being in this state. In fact, in a separate test we conducted last year, people with alexithymia showed more distress in response to witnessing others’ pain than did individuals without alexithymia.
These preliminary data found that while individuals with AS seem to have impairments in inferring others’ mental states (cognitive empathy), they are as empathically concerned for others (emotional empathy) as control subjects.
One strength of NeuroTribes is the respect Silberman shows to those with firsthand knowledge of what it means to be autistic, a perspective that sometimes surprises. In scientific circles, for example, autistic people are often said to lack empathy, to be “mind-blind.” The idea is now an old one. Researchers can calculate an “empathy quotient” by asking questions like, “I prefer animals to humans,” and “I find it difficult to judge if something is rude.” Other data come from experiments on how people make sense of faces. Autistic people tend to avoid looking at eyes and, presented with isolated images of eyes, have trouble imagining what the depicted person might be feeling. This perspective-taking is referred to as cognitive empathy, or theory of mind, and is distinct from the ability to feel what another feels. In a passage about autism-activist Jim Sinclair, Silberman offers a subtle, humane challenge to the conventional wisdom of researchers. Sinclair is hurt by the description of autism he reads in a pamphlet. “I didn’t consider myself to be someone who didn’t have empathy,” Sinclair says. He wasn’t someone who “lacked the ability to form emotional bonds, and wasn’t interested in relating to others.” As Sinclair describes watching a documentary about another man with autism, there is a jarring incongruity between the scientists’ interpretation of the man’s behavior and Sinclair’s nuanced insights. Where a researcher claims the subject is oblivious, Sinclair sees a familiar struggle to communicate.
If empathy is the ability to inhabit another’s mind, Sinclair’s anecdote suggests that estimates of empathy should be calibrated for just how far one must travel to do so. NeuroTribes amasses a disturbing number of statements by autism researchers who seem unable to make the trip themselves. One clinician describes autism as a terminal illness and autistic children as dead souls. Others consider them “shells” or “husks.” The most unnerving revelation occurs when Silberman profiles Ivar Lovaas, the developer of a common therapy known as Applied Behavior Analysis. In a 1974 interview, Lovaas says that autistic children “are not people in the psychological sense.” He combats an autistic child’s self-injurious behavior by striking her, and his therapy rooms deliver corrective shocks through gridded floors. Spoons of sherbet serve as rewards—a method that seems less sweet when Lovaas reports that “it is a pleasure to work with a child who is on mild food deprivation.” Today’s behavioral therapies tend toward Lovaas-lite, an exacting but benign regimen of small treats, but just last year the Food and Drug Administration held a panel to discuss the use of electrical shock to modify self-injuring and aggressive behavior among autistic patients. Although representatives of a Massachusetts clinic argued it was a necessary treatment of last resort, the panel recommended banning the apparatus used in the procedure.
“Being autistic has always given me a strong sense of justice and fairness, and a burning drive to do the right thing and to fight for it, even when it seems like struggling against the weight of the world. This seems very related to my extreme empathy, which is also tied to my experience of being autistic.
“From the time I was little, I wanted to put a stop to violence of any kind, and I have carried that passion with me to all of my work now against state-sponsored violence against multiply marginalized folks.
“Knowing that injustice or violence exist anywhere is deeply painful for me, whether it directly targets me or not, and I believe that I must do anything within my capacity to work for a world where none of us have to be afraid anymore. If I were not autistic, I am certain I would not have the same drive as I do now.”
‘It’s that myth again that autistic people don’t have empathy, when in fact we often have so much that it’s hard to deal with. That empathy is what helps me to write characters and imagine how they’re feeling.
“The findings demonstrate that, contrary to what has been thought, the apparent lack of interpersonal interest among people with autism is not due to lack of concern,” said Nouchine Hadjikhani, a study author and a Harvard associate professor of radiology. “Rather, our results show that this behavior is a way to decrease an unpleasant excessive arousal stemming from overactivation in a particular part of the brain.”
In other words, when people with autism don’t look others in the eye, it doesn’t mean they don’t care, said Hadjikhani.
He replies by noting a particularly satisfying experiment he conducted in 2010, that proved, with brain scanning (functional Magnetic Resonance Imaging is the full term, fMRI), that you can be diagnosed with autism but still show empathy. Equally and just as importantly, the experiment showed that non-autistics may lack empathy.
The condition that describes this lack of empathy is called alexithymia, and affects roughly 8% of the general population, says Bird. Autism affects 1% of the population. ‘Alexithymia and autism are completely independent of each other,’ he says, ‘…yet even now we are told time and again that autistic people lack empathy. Of course some do, but many do not, and this is really important because it has large consequences for how they are treated by society and whether, for a practical example, they can volunteer their time or find work.’
‘Ask anyone in the field,’ says Bird, ‘what characterizes autism, and they’ll say a lack of empathy. An autistic person can’t recognize emotions. Sometimes they can’t engage in moral reasoning. We think that’s completely wrong. Completely inaccurate.’
His broader message to the community is that ‘individuals with autism are not unempathic, psychopathic monsters. This is really important. We can’t be wrong about that one. …I have heard so many stories about people who simply cannot get jobs or even volunteer their time because of this damaging myth, which causes additional frustration for the parents of autistic individuals. Individuals with alexithymia are also not psychopaths of course, although they may struggle to understand emotions in a typical way.’
This plays into the lie that autistic people lack empathy. A myth that is increasingly being debunked.
The ‘double empathy problem’ refers to the mutual incomprehension that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning.
In a sense it is a ‘double problem’ as both people experience it, and so it is not a singular problem located in any one person.
The ’empathy’ problem being a ‘two-way street’ has been mentioned by both ‘autistic writers’ (Sinclair, 1993) and non-autistic writers alike (Hacking, 2009)
Am highly empathetic to the point of over-empathizing. I may not always be able to process cognitively what I’m experiencing (see point below), but I am overwhelmed by the emotional responses of people around me — which includes things I read on the internet, because I’m experiencing them as the other person does. (Not in the way of, I know how it is to be them when I’m not them or don’t have the same experiences, but in the way of, their anger settles in me, or their sadness settles in me, and I can’t get rid of it.)
Some autistic/similar people say they have higher empathy then neurotypical people, some lower, some say no difference. #autchat
Today we’ll talk about all types of empathy experiences. #autchat
Q1: What is the experience of empathy like for you? Feelings, thoughts, sensations? #autchat
Q2: Are there situations where you try to increase your empathy? Where you try to lower it? If so, what do you do? #autchat
Q3: Do you think your life would be different if your experience of empathy were different? How so? #autchat
Q4: Do you think your experiences of empathy are different in degree from neurotypical people? In type? #autchat
Source: Experience of empathy – autchat
NT members of society interact with each other, at least on the surface. But do they actually exhibit social-emotional reciprocity, or are they merely going through the motions, masking a true impairment? I’ve often wondered (even before realizing my place on the autism spectrum) if people actually engaged in true reciprocation, or if they were simply better at hiding their inability to do so?
Is “normal back-and-forth communication” in short snippets of superficial information all that desirable? Or would it be more helpful if the conversationalists dove into greater detail from time to time?
When they share their interests and emotions, are they really sharing them? Or are they cherry-picking soundbites that show the world a Likeable Them? Are they simply better (relatively speaking) at “putting on” the “right” emotional “skin” or launching the “right” emotional script than we are? Might their true responses be more similar to ours than anyone realizes, except that they’re comparatively better at pretending or “acting the part”?
Do they really share their interests? Or does their small talk (or other conversation) focus more on bonding over a lower common denominator (such as sports, current events, celebrities, etc) that they know through their experience will be shared by the majority of other people?
NT society frequently fails to respond to social interactions, too. One frequent example: I’ll actually work up the guts to glance the direction of a passing person and actually say “hi”; the person might glance directly at me, but fail to say “hi” back. I know there’s a plethora of reasons for this – hearing impairment, preoccupation, etc, but it’s such a common phenomenon that I begin to wonder just how “reciprocative” the rest of the world is in turn.
It is frequently believed that autism is characterized by a lack of social or emotional reciprocity. In this article, I question that assumption by demonstrating how many professionals—researchers and clinicians—and likewise many parents, have neglected the true meaning of reciprocity. Reciprocity is “a relation of mutual dependence or action or influence,” or “a mode of exchange in which transactions take place between individuals who are symmetrically placed.” Assumptions by clinicians and researchers suggest that they have forgotten that reciprocity needs to be mutual and symmetrical—that reciprocity is a two-way street. Research is reviewed to illustrate that when professionals, peers, and parents are taught to act reciprocally, autistic children become more responsive. In one randomized clinical trial of “reciprocity training” to parents, their autistic children’s language developed rapidly and their social engagement increased markedly. Other demonstrations of how parents and professionals can increase their behavior of reciprocity are provided.
Source: Toward a Behavior of Reciprocity
Theory of mind is declared the native domain of neurotypicals; a kind of transcendent ability that is regarded the basis for communication and, in more inflated estimations, is celebrated as the very thing that defines us as human. A lack of theory of mind, or “mind-blindness”, on the other hand, is attributed to autistics as a kind of deficit. This supposed deficit is expressed as a lack of empathy on the part of autistics, sometimes carefully parsed as a lack of cognitive empathy (the ability to know what another person is thinking/feeling), but far too often, sloppily conflated with a lack of affective empathy (the ability to feel compassion for another person).
And in pragmatic terms, autistics are indeed frequently unable to discern or know what another person might be thinking, while a neurotypical person is often able to discern what another neurotypical person might be thinking or feeling. As I have noted in previous entries in this blog, this works between two neurotpicals, not because they have insight into the thoughts or feelings of other people, but because there is a statistical likelihood that they would be thinking or feeling the same thing. They are sitting in adjacent wells, describing bits of sky that share the same cloud. Or we might say that their individual experiences of their respective beetles are similar enough that the value, utility and dangers associated with those beetles correspond sufficiently to prevent disrupting the perception that meaning, but also experience, is shared.
More than that, neurotypicals being predisposed to organize the world according to social interaction and normative social convention rather than by systematizing large quantities of discrete sensory data using logic (the domain of the autistic), neurotypicals blur the lines between the privately experienced beetle and the pragmatic, shared representation of a beetle and declare all beetles in all boxes identical. Their non-reflective embrace of the notion of theory of mind is, unto itself, a kind of mind blindness: a blindness to the reality that no one can ever know what the beetle in someone else’s box is like and that, for some, a highly divergent neurological structure means that they cannot participate in the language game by which meaning is forged in social interaction.
And this is where the neurotypical belief in theory of mind becomes a liability. Not just a liability – a disability.
Because not only are neurotypicals just as mind-blind to autistics as autistics are to neurotypicals, this self-centered belief in theory of mind makes it impossible to mutually negotiate an understanding of how perceptions might differ among individuals in order to arrive at a pragmatic representation that accounts for significant differences in the experiences of various individuals. It bars any discussion of opening up a space for autistics to participate in social communication by clarifying and mapping the ways in which their perceptions differ. Rather than recognize that the success rate of the neurotypical divining rod is based on mere statistical likelihood that the thoughts and feelings of neurotypicals will correlate, they declare it an ineffable gift, and use it to valorize their own abilities and pathologize those of autistics.
A belief in theory of mind makes it unnecessary for neurotypicals to engage in real perspective-taking, since they are able, instead, to fall back on projection. Differences that they discover in autistic thinking are dismissed as pathology, not as a failure in the neurotypical’s supposed skill in theory of mind or perspective-taking.
I’ve spent my whole life being told that non-autistic people are so brilliant and intuitive when it comes to social issues. Like many autistic people, though, I haven’t always felt like I’ve seen much empathy, compassion, or understanding. And the evidence is starting to suggest that we’re not wrong about the level of judgment and stereotyping we face.