The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults

The title of this post flips the focus of the diagnostic lens from neurodivergent students to neurotypical adults. Let’s take a look at the neurotypical mind using the pathologizing language of disorder.

Neurotypical syndrome is a neurobiological disorder characterised by preoccupation with social concerns, delusions of superiority, and obsession with conformity. There is no known cure.

Source: NeuroTribes by Steve Silberman review – an enlightened take on autism and difference

Perhaps the most obvious giveaway is an NT’s tendency to make “small talk” or to want to “chat” with you. While small talk appears to be nonfunctional, for NTs it serves a very specific purpose. It’s a good idea to humor them and participate to whatever degree you can tolerate. If you’re patient with them, many NTs will soon feel comfortable enough to move from small talk to more interesting, in-depth conversations.

Source: What is neurotypical?

My oldest is autistic. He attended elementary school until a few years ago, when we started unschooling. He has an incredible memory that provides gritty texture to his stories of his time there. Stories about forced neurotypicalization, lack of empathy and understanding, and color-coded behaviorism. Stories about the pathologizing of his wonderful mind that killed confidence, making room for shame to unfurl. Such stories are common in deficit and medical model cultures, which is why we need a social model awakening.

A pernicious stereotype about autism is that autistic people lack empathy. To be openly autistic is to encounter and endure this supremely harmful trope. One of the cruel ironies of autistic life is that autistic folks are likely to be hyper-empathic. Another irony is that neurotypicals and NT society are really, really bad at empathy and reciprocity. When your neurotype is the default, you have little motivation to grow critical capacity. Marginalization develops critical distance and empathic imagination.

We have an empathy problem, and it’s not one confined to autistic people. It’s a double empathy problem.

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.

Source: From finding a voice to being understood: exploring the double empathy problem

Neurodivergent people are forced to attempt understanding of neurotypical people and society. We are constantly judged and assessed by neurotypical standards. We must analyze and interpret in order to conform and pass so that we can get the sticker, the “cool kid cash”, and the promotion. There is almost no reciprocity in return. Let’s change that. Turn the diagnostic lens upon yourself. Question assumptions, learn about other matrices of sociality, and reciprocate.

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 utterly ignorant of alternative matrices of sociality.

Source: Autistic Empathy – Ryan Boren

In that post on autistic empathy are many resources to help neurotypical folks develop empathy for neurodivergent perspectives. My school district’s work on in-class inclusion of neurodivergent and disabled students is a great and wonderful relief. Segregation is always lesser and wrong. Let’s continue that progress toward social model understanding with attention to the mutual incomprehension of the double empathy problem. “When the adults change, everything changes.”

“Empathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination.” We can’t truly step into another neurotype, but we can seek story and perspective. I’ll leave you with this video offering a taste what it is like to endure the daily gauntlet of neurotypical questioning. To not respond to questions is to be called rude. To not respond will get you publicly color-coded as an orange or red and denied perks that the compliant NT kids get. To not exchange this disposable social styrofoam is to be a problem. Make it stop. Empathize with what it is like to navigate these interactions while dealing with the sensory overwhelm of raucous environments not designed for you.

Autistic Empathy

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 and neurodivergents 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 utterly 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.”

Source: Silberman, Steve (2015-08-25). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 285). Penguin Publishing Group. Kindle Edition.

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? Look in the mirror.

Are autistic folks unempathetic, or do you have an underdeveloped sense of reciprocity and justice?

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.

Source: Autism, empathy, and the mind-blindness of everyday people – Karla McLaren

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.

Source: What It Means To Be Highly Empathetic, And Autistic

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.

Source: Strategies for Neurotypical People to Develop Empathy for Autistic People | The Enthusiastic Life

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.

Source: Empathy, Imagination and Autism – Autism and expectations

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.

Source: People with Autism Can Read Emotions, Feel Empathy – Scientific American and People with autism can read emotions, feel empathy | Spectrum | Autism Research News

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.

Source: Differentiating Cognitive and Emotional Empathy in Individuals with Asperger Syndrome | Max Planck Institute for Human Development

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.

Source: Steve Silberman’s NeuroTribes and the History of Autism – The Atlantic

“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.”

Source: 7 activists tell us the best thing about being autistic

‘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.

Source: Autism Awareness Week: Stop telling me I don’t ‘look’ autistic | Metro News

“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.

Source: Study: Overstimulation, not indifference, makes eye contact hard for people with autism

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.’

Source: Message of hope for people with autism | Oxford Today

This plays into the lie that autistic people lack empathy. A myth that is increasingly being debunked.

Source: But You Haven’t Seen it Yet: Why Critiquing Marketing of Future Portrayals of Disability is Important | crippledscholar

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)

Source: From finding a voice to being understood: exploring the double empathy problem

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.)

Source: Autistic Hoya: Why do I think I’m autistic . . . 

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.

Source: Depathologizing Asperger’s / autism ~ In a way, neurotypical people might meet the criteria, too – the silent wave

Atypical and Autism Representation

The new Netflix show Atypical is not only really bad and harmful autism representation, it’s also misogynistic, racist, and fatmisic. It gets so many things about autism wrong while also getting sex and relationships wrong. Here are my tweets as I was working my way through the episodes. One of my biggest complaints with Atypical is that with a little social model awareness and non-misogynistic sex and relationship education, most of the plot goes away.

Collected below is feedback from actually autistic folks on the many problematic aspects of Atypical.

Continue reading “Atypical and Autism Representation”

Ben Foss on Dyslexia and Shame

We should be measured by what we can do, not by what we can’t.

Shame cuts off connection and thrives on hiding.

Dyslexia is a particularly powerful form of shame, and it involves a lot of vulnerability.

Vulnerability can be defined as true courage.

Shame is a very lonely moment.

Reading disabilities often match in intensity the level of shame associated with incest.

Dyslexia is a perfect storm of shame.

  1. Arrives at the time you are first being evaluated
  2. Made harsher by lack of explanation. Fail without context.
  3. Reinforced by peers and institutions

“Retard” is a bullet sent at a child when it gets said.

Guilt is feeling bad about something you did, something you can fix. Shame is feeling bad about who you are.

I knew I was going to be on a bad list. There was going to be a good list, and I was going to be on the bad list, maybe alone.

I was proud because I changed the narrative.

Negative scripts: blame, contempt, comparison

The shame of special education.

Dyslexia is like a bad cellphone connection to the page.

Leadership is changing what people think is possible, or changing what they think is appropriate.

Source: Choose strength not shame: Ben Foss at TEDxSonomaCounty – YouTube

Dyslexia is not a disease, it is an identity. An identity is not something one cures; it is the basis of community and is an element of self you aim to understand and embrace. My hope is that you and your child will learn to own dyslexia, to understand it, and ideally, to celebrate it.

This book— and your mission as a parent— is about moving the model for your child from dyslexia as disease to dyslexia as identity, an identity we can all be proud of.

Most schools and reading programs designed for remediation of dyslexia are based on the idea that dyslexia equals brokenness. Their aim is to transform the child into a person who can read without problems. But I’m here to tell you that’s just wrongheaded. I’ve learned that if you make your primary goal teaching your child to read or spell just like every other child, you’re going to decrease your child’s chances of achieving success. It’s like telling a person in a wheelchair that she needs to put in more time to learn how to walk.

I am introducing these terms to address an underlying bias in our schools: that eye reading is the only form of reading. You can help move the needle on this limited assumption by using the terms eye reading, ear reading, and finger reading yourself and explaining them to your child. We need to celebrate children’s love of ideas and quest for knowledge and give them permission to not like standard books at the same time! When we give kids opportunities to gather information and explore ideas in other ways, they will thrive.

Focusing on eye reading overlooks the real goals of education, which are learning, independent thinking, and mastering the ability to make new connections in the world of ideas.

A central theme in this book is that we must question what we are taught is the “normal” way to do things, and instead integrate multiple ways for our children to access information.

If you are a dyslexic person or the parent of a dyslexic child, I recommend that you allow technology to become your new best friend.

The key to my happiness occurred when I stopped trying to change my brain, and started changing the context around me.

One dyslexic friend of mine described his shame as “slow-drip trauma.” He felt unworthy and “not normal” every day. As an adult, he was treated for post-traumatic stress syndrome that was caused by his experiences in school.

Ninety percent of my injuries happened when I was in school and before I was talking about my dyslexia publicly. Hiding who you are can translate into self-harm. When I talk with my peers in the dyslexia movement, a majority of them had a specific plan for suicide when they were teenagers. I regularly meet dyslexic kids who cut themselves or worse when they were young. I am fine today, but the hiding left scars, figurative and literal, for many of us.

My friend Steve Walker, a very successful dyslexic entrepreneur, tells me all the time that you could not pay him enough money to go back to any type of school setting. He even says that he would sooner kill himself than go back to school. Yet in the same breath he will also say that you could not give him enough money to take away his dyslexia, because it is a part of who he is. Many times when I was in school or taking a standardized test, I rejected an accommodation because I was embarrassed and ashamed: I did not want to stand out, or I was frustrated that it would take too much effort to get permission to have my exam read aloud to me.

The majority of teachers and administrators are well-intentioned and look for ways to help your child. However, they often miss the most important point, which is that the goal is not to fix your child— your child is not broken. The goal is, instead, to play to your child’s strengths, support his weaknesses, and give him access to information.

Dyslexia is a genetic, brain-based characteristic that results in difficulty connecting the sounds of spoken language to written words. It can result in errors in reading or spelling as well as in a number of areas not considered major life activities, such as determining right and left. Individuals who are dyslexic can be highly independent and intelligent. Dyslexia is also characterized by a set of strengths that typically come with this profile in one or more of the following areas: verbal, social, narrative, spatial, kinesthetic, visual, mathematical, or musical skills. Overall, it is characterized by an increased ability to perceive broad patterns and a reduced ability to perceive fine detail in systems.

In this definition, dyslexia is characterized as a “disorder,” as opposed to a characteristic. The word disorder suggests that something is “wrong” or that the person is broken. However, disability can be defined only in a particular context, which is to say if there was no such thing as written text, there would be no disability related to reading.

Often people discuss dyslexia in terms of it having been diagnosed, but that word reinforces the notion that dyslexia is a disease, a scourge, an imperfection, and that someday we can find a cure. As I said in the introduction, there will be no cure because there is no disease! Dyslexia is a characteristic, like being male or female, or from a certain state, or a graduate of a certain university. There’s nothing less than perfect inherent in any of those descriptions, is there? You can start changing this practice in your own house today, replacing the phrase “diagnosed with dyslexia” with “identified with dyslexia.”

Source: Foss, Ben (2013-08-27). The Dyslexia Empowerment Plan: A Blueprint for Renewing Your Child’s Confidence and Love of Learning. Random House Publishing Group. Kindle Edition.

See also,

Eye Contact and Neurodiversity

In conversation, I listen better when not managing the sensory flood that comes with eye contact. I often close my eyes to shut out the social and sensory distractions–the relentless barrage of cues and stimulus–and focus on the words being spoken.

Don’t force eye contact. Gaze aversion is a sensory processing tool, one necessary to managing sensory overwhelm. Dissociation is a tool for managing information and protecting ourselves. When an autistic person looks away, they are thinking and processing. They *are* paying attention. There is a lot of processing and parsing going on within.

We can either look like we’re paying attention, or we can actually pay attention, in our way, using our tools. We can either concentrate on your words or concentrate on making eye contact.

Don’t burden neurodivergent kids with neurotypical expectations of eye contact. They are not neurotypical, never will be, and don’t need to be. Forcing eye contact harms them and denies an important coping mechanism. IEPs and behavioral therapies should not make eye contact a goal. Such compliance rubrics are not in touch with their needs or the way their minds work.

Instead, try compassion and empathy. Change the expectations instead of changing us. Autistic communities have different ideas about appropriate amounts of eye contact. Neurotypical norms are not the only norms.

Non-autistic people tend to have very different idea about what is appropriate amount of eye contact compared to autistic people.

People who do look away or avert their gaze when answering a question or when asked a question are just…thinking.

Source: Ask an Autistic #21 – What About Eye Contact? – YouTube

A challenge I am continually faced with as an autistic adult is the misinformed presumption and resulting behavior of neurotypical people when I do not look at them the in way they expect, want or demand of me. It is challenging because society has put the onus on me to change. Often it does not matter to others why I am different. They just want me to stop being different. Recently I was told directly, “If you want to be treated like a real person then act like one!”

Eye contact can be hard for autistics for a variety of reasons. When I was a youngster I received too much bright, bold, painful sensory information from making eye contact. To guard against the intense physical pain I did not engage in eye contact. If my teacher demanded eye contact I obediently did so, but at a price. I would float out of my body, hover up near the ceiling and look down, watching the little girl of me (Endow, 2013).

Donna Williams says, “Dissociation is the ability to cut off from what is happening around you or to you. In its simplest form it is daydreaming. It is a skill all children have and which children with autism tend to overdevelop in managing a world they find overwhelming for a whole range of reasons” (Williams, 2013).

My sensory system has changed over time and eye contact does not produce as much pain as it once did. When I am well regulated I can manage the moderate pain I do experience from eye contact in my day-to-day life. However, avoiding eye contact is something I automatically do to minimize the amount of incoming sensory information and thus cut down on pain. I have to remain on high alert so as to catch when I am automatically moving into this eye contact shut down mode or I will not even know when it is happening.

Yet, even when people know eye contact can be painful and that we will not pick up much social information, we are STILL expected to perform the feat for the social comfort of others. Each time we don’t perform the socially expected eye contact people assign negative character attributes to us such as shifty, sneaky, untruthful, disinterested and hiding something.

Imagine how you might feel if you were asked to stop looking at people – to cease all eye contact. Now imagine how much more difficult that would be if each time you did manage not to engage in eye contact you felt physical pain and the only way to relieve that pain was to look at the person even though you knew it would make others unhappy. This is often what we put autistics through when we insist they go against the way their brain does business by forcing them to use typical eye contact”  (Endow, 2013).

Source: Autism and Eye Contact by Judy Endow, MSW

Educators have been taught that it is essential to get individuals’ attention before beginning instruction and to recapture attention to task when peoples’ demeanors suggest that their attention is waning. To accomplish this task, teachers often first attempt to get attention by cuing “Look at me.” They also often assume that they have individuals’ attention when they “get eye contact” and that those who do not conform cannot be paying attention. Thus, when individuals who have autism seem to avoid looking into the eyes of teachers and others with whom they interact, the strategy that comes most naturally and is often pursued quite intently is the verbal cue “Look at me.” If an individual who has an autism spectrum disorder fails to respond within what is viewed as a reasonable length of time, the cue may be repeated more forcefully. If the person still fails to look as directed, misinterpretations of why the person isn’t “complying” may fuel futile power struggles that only frustrate everyone concerned and further thwart the abilities of individuals with autism to respond. Whether requesting eye contact is a wise approach to focusing attention depends both on the person who has autism and on circumstances surrounding the expectation.

Sometimes getting an individual to “make eye contact” becomes a high priority that falls under the rubric of “compliance and direction following” training. Individualized education programs often include objectives such as “will make eye contact when requested 80% of the time”. Some goals and objectives seem to be stated in context of assumptions that students with autism spectrum disorders have sufficient understanding of social conventions to make routine judgments about where, when, and with whom eye contact is appropriate and expected and/or that they are consistently able to spontaneously initiate and selectively maintain eye contact in social situations. As an example, consider an objective that states, “Will increase eye contact when in social situations with peers. Student will make eye contact X number of times every 10 minutes when involved in shared activities.” Folks who write and strive to achieve such goals and objectives may be as naive in their understanding and interacting with individuals who have autism as individuals with autism are naive at understanding and using social conventions. We need to re- examine assumptions that undergird choices among instructional/interactive strategies, to define purposes that we hope to accomplish, and to candidly assess whether hoped-for outcomes are being met. While attempting to maximize adaptive behaviors on the part of individuals who have autism spectrum disorders, we too must adapt when observed responses clearly indicate that our purposes are not being achieved.

“If you insist that I make eye contact with you, when I’m finished I’ll be able to tell you how many millimeters your pupils changed while I looked into your eyes.”

In addition to difficulties with attending to and interpreting information that is embedded in social context, some have great difficulty with attending to and coordinating two sources of sensory input at once. For example, astute teachers often observe that a student with autism “looks out the window all the time, just doesn’t appear to be paying attention at all, but then can tell me everything I said.” It appears likely that the described student has difficulty with coordinating listening and looking behaviors and, perhaps, with receiving and processing information coming in from multiple sensory channels. Insisting that he make eye contact might well render him unable to take in and store auditory input. Or… he may be able to coordinate looking and listening in some situations but not in others. Educators who are relatively unfamiliar with autism are often understandably perplexed by inconsistencies evident in an individual’s response patterns. There appears to be a natural inclination to assert that, “if he could do it in that situation, I know he can do it in the other…”.

Source: Should We Insist on Eye Contact with People who have Autism Spectrum Disorders

We may not look the interviewer in the eye, especially when it’s our turn to talk.  We may look at the conference table surface, the floor, or the framed art just above your head on the wall behind you.  Please don’t take that the wrong way.  As mentioned, we’re (often extremely) engaged and enthusiastic.  Focusing on someone’s eyes may feel like staring (either we’re doing the staring or someone is staring at us, either of which is uncomfortable), which can interfere with our ability to concentrate.  Focusing on something other than someone’s eyes allows us to concentrate again.  For me, it’s akin to “taking the pressure off”.  Again, it’s nothing personal, nothing specific to the interviewer themselves.

A popular and stubborn misconception says that this indicates dishonesty, lying, or otherwise hiding something.  This is absolutely not true.  Over 40 years of research has completely debunked this myth.  It’s also nothing personal against the interviewer (or to whomever else with whom we’re talking); we’re not trying to avoid the person or express disinterest, dislike, or any other negative emotion.  It’s simply a matter of discomfort, and this generally applies widely; for those of us who are more uncomfortable making eye contact, we will generally experience this discomfort with almost everyone, maybe except for a few very close family members or friends (if that!).  Therefore, please don’t take it as a personal affront, sign of disrespect, sign of disinterest, or “evidence” of dishonesty.

Source: Dear employers ~ How to work with employees “with” Asperger’s / #autism ~ Part 3: Thoughts on Interviewing, Hiring, and Promotion – the silent wave

For instance, a big focus of Evie’s therapy was “making eye contact.”  I couldn’t understand why this was so important.  Finally, I said, “I really don’t care if Evie makes eye contact.  I want to find a way for her to communicate what she needs.”

Who does eye contact REALLY help?  Does it help Evie when it seems aversive to her?  Or does it help other people feel more comfortable with Evie?

Source: the cost of compliance is unreasonable | love explosions

Looking away from an interlocutor’s face during demanding cognitive activity can help adults answer challenging arithmetic and verbal-reasoning questions (Glenberg, Schroeder, & Robertson, 1998). However, such ‘gaze aversion’ (GA) is poorly applied by 5-year-old school children (Doherty-Sneddon, Bruce, Bonner, Longbotham, & Doyle, 2002). In Experiment 1 we trained ten 5-year-old children to use GA while thinking about answers to questions. This trained group performed significantly better on challenging questions compared with 10 controls given no GA training. In Experiment 2 we found significant and monotonic age-related increments in spontaneous use of GA across three cohorts of ten 5-year-old school children (mean ages: 5;02, 5;06 and 5;08). Teaching and encouraging GA during challenging cognitive activity promises to be invaluable in promoting learning, particularly during early primary years.

Source: Helping children think: Gaze aversion and teaching – Phelps – 2006 – British Journal of Developmental Psychology – Wiley Online Library

I can remember the overwhelming experience having eye contact with others sometimes had on me as a child. Too much bright, bold, painful sensory information was received when directly looking into someone’s eyes for a sustained period of time (see paintings below: Look Me In the Eye, Buzzing Bones, SIZZLE POP and STRIKE ME). Coping came by disengaging from the experience. I would hover up by the ceiling and watch the girl below who was me. When the girl looked into the eyes of people I would use the too much information she got to fashion alternatives to those eyes that would cut down on the overwhelming sensory information (see paintings below: Eye Fish, Eye Trees, Eye Land and Eye Tulip).

Source: Eye Contact and Autistic Dissociation: One Example | Judy Endow

I don’t need to look at you to pay attention to you.

Actually, looking at you while you talk is very distracting to me.

It may look like I am playing with something in my hands while my gaze is someplace far away, but I’m here with you – working to process things in my own way.

To the outside world I seem disinterested and aloof, but I promise I am here with you, working things out in my own way. So much is happening below the surface.

When I appear to be off in my own world, I’m not as far away as I seem.

Source: Why Autistic People May Seem Like They’re Not Paying Attention to You | The Mighty

According to the study, looking someone in the eye can result in unpleasant overstimulation of the brain for people with autism.

“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.

“It’s because it’s too much for them,” she said.

“Forcing children with autism to look into someone’s eyes in behavioral therapy may create a lot of anxiety for them,” Hadjikhani said.

Source: Study: Overstimulation, not indifference, makes eye contact hard for people with autism

I sometimes close my eyes to better parse the speech coming at me. I swim in sensory overwhelm. I must pick a firehose. Eyes front preserves the illusion of compliance, so I’ll stop listening. I’m not interested anyway.

Source: CHAMPS and the Compliance Classroom – Ryan Boren

The global view about liars is that they look away from you (avert their gaze) when they are lying. This is a false belief, which can be backed up with 40 years of research. What you will often find is that liar’s will often consciously engage in greater eye contact, because it is commonly (but mistakenly) believed that direct eye contact is a sign of truthfulness.

For these reasons, no relationship exists between eye gaze and deception.

Source: Guide To Detecting Deceit and Evaluating Honesty

Diversity & Inclusion Recap #5

In this issue:

  • Autistic empathy and the mind-blindness of everyday people
  • Accessible consumerism and #FoodieAbleism
  • Decolonize science
  • Disability and in-class testing
  • #OwnVoices #CripLit
  • Disability journalism
  • #AutisticWhileBlack
  • Toxic autism awareness
  • Autism Awareness Month
  • Autism puzzle piece
  • Let them stim
  • Corporate D&I
  • Guys and bots
  • #NotSpecialNeeds
  • Trans women “male privilege”
  • Autism discovery
  • Autism representation
  • AP stylebook on gender-neutral pronouns
  • Ableism, unintentional inaccessibility, rights-based supports, universal design
  • Newsroom diversity
  • Wheelchair-bound
  • Disability and dress codes
  • Autism mom
  • Toxic Masculinity, Predatory Men, and Male Paralysis
  • Ableist gates
  • Ableist attendance policies
  • Event accessibility information
  • Analyzing inspiration porn
  • Prove your disability
  • #ThePricePWDPay, #CripTax, and #AcademicAbleism
  • Trans Broken Arm Syndrome
  • Blaming autism
  • Race and racism in the Middle Ages
  • Autism and Moonlight
  • Neuroscience and self-esteem
  • Ableist kink and relationship anarchy
  • Disability shouldn’t define you
  • Tech spreads hate
  • Inclusive work culture
  • Majorities and edge cases
  • Designing for color blindness
  • The Mask You Live In – an exploration of American Masculinity
  • Acute and chronic
  • Backstopping
  • Meritocracy myth
  • Transgender census
  • Online safety guides
  • Resisting exclusion
  • Sensory overload
  • End the awkward
  • Wheelchair flow in NYC
  • Burnt Out: Experiences of Women on the Autism Spectrum
  • Spoons, poverty, and disability
  • #Chronicloaf #FilmDis
  • Racism + capitalism + ableism + education + the violence of the security state
  • Social/medical model misery calculator
  • Data bias
  • Presentation accessibility and comic sans

Autistic empathy and the mind-blindness of everyday people

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.

Source: Autism, empathy, and the mind-blindness of everyday people – Karla McLaren

Accessible consumerism and #FoodieAbleism

I need every restaurant and gas station in America to have straws, preferably plastic and bendy. My son, a 10-year-old boy with Down syndrome, has never quite mastered that complex series of motions to drink consistently from the lip of the cup. What he can do, though, is curl his tongue around a straw and create appropriate suction to drink, which was quite the triumph when he first learned it. A whole world of easy hydration opened to us. My family is not alone. Straws are a wildly successful example of assistive technology for millions of people with diverse abilities, all of whom are best served by ubiquitous straws. If Grenier gets people to stop sucking, what about my son?

There’s a deep tension between environmental consumerism and accessible consumerism. Many disabled people have come to rely on prepackaged foods, single-serving products, plastic cups, and yes, straws. On the other hand, there are those in the environmental movement who use shame to push people toward better individual decisions for the environment. Last year, a Twitter user named Nathalie Gordon posted a picture of plastic wrapped pre-peeled oranges, taunting: “If only nature would find a way to cover these oranges so we didn’t need to waste so much plastic on them.” It rapidly went viral and today has over 100,000 retweets and likes.

But for many disabled people, these pre-peeled oranges were wonderful.

Source: Saving the Oceans With My Son and Adrian Grenier – Pacific Standard

http://autchat.com/eating-difficulties/

http://autchat.com/july-5-2015-eating-difficulties-revisited/

http://autchat.com/autchat-mar-19-2017-eating-difficulties-transcript-of-chat/

Decolonize science

Yes your work has a political program: white supremacy.  And in order to work towards one that respects & works with the everyone’s humanity in mind you must work to become a historically competent scientist.  Its time for us to examine the values and political relations in our lives and around us and envision better ones that aren’t based on colonial ideas about gender, race, sexuality, age, ability, etc..

Source: We Need Decolonial Scientists | Decolonize ALL The Things

Disability and in-class testing

I’ve been inching away from the blue book for years, but it’s time to go cold turkey and match my praxis to my principles. Whatever pedagogical gains the in-class test might bring – and I’ll argue they are few and increasingly less relevant – I can no longer justify forcing people with disabilities to disclose their conditions in order to receive basic test-related accommodations.

Not only do students have to disclose disability to their professors —who are no more immune to ableism than to any other sort of bias — but the most common form of accommodation extends the disclosure to classmates. Many students with invisible disabilities (such as anxiety disorders or ADHD) require quiet rooms and extra time to work on a test. I’m thrilled to provide both. On the other hand, when the whole class gathers to take an exam, with one student conspicuously absent, everyone notices.

Source: Why I’m Saying Goodbye to In-Class Tests | Vitae

#OwnVoices #CripLit

Use it for whatever marginalized/diverse identity you want (I personally like the WNDB definition) and for whatever genre, category, or form of art you want. As long as the protagonist and the author share a marginalized identity.

Source: #ownvoices

Disability journalism

Research shows journalists routinely fail to interview disabled people; the humanity of victims is erased from the discourse about such cases; and news outlets often imply that murders of disabled people by caregivers are “justified” or “mercy killings.”

We found it when we saw that in 2015, not a single journalist who reported on one of these stories reached out to a disabled person, let alone the professional experts within the disability rights community. Journalists don’t talk to disabled people.

In the disability rights community, we tend to pass around the worst of the articles. And the worst of the articles are really bad. But I was quite interested in the places where it was clear journalists went into reporting on a murder and were trying to do it in a neutral kind of way, and they still didn’t follow the best practices of “Journalism 101.” Being thoughtful about where you get your reaction quotes: If you get a highly prejudicial quote from one side, try to balance it out on the other side. If you hear a defense attorney put forth a theory on why a crime happened or why a crime didn’t happen, remember that they’re a defense attorney and be really thoughtful about how you use that quote. Really kind of basic stuff. Not in the worst of the cases, not in the worst of the articles, not in the cases where the journalist affirmed a “mercy killing” narrative, which is where I see the really awful examples, but in really pretty OK, kind of neutral reporting, still not following best practices. And as a journalist, that was really useful for me to see, especially to see it 50, 60, 70 times, again and again as a real pattern.

Source: ‘We’re Not Burdens at All’: A Q&A on Media Coverage and the Murders of Disabled People – Rewire

#AutisticWhileBlack

Toxic autism awareness

Our autism awareness campaigns of recent years have indeed made everyone aware of autism, but that public awareness does not match the facts. In fact, in many regards, John Q. Public is only aware enough of autism so as to be toxic to actually autistic people. This is serious. The definition of toxic by Merriam-Webster is “containing or being poisonous material especially when capable of causing serious injury or death.”

Today it seems socially acceptable to blame the evil behaviors of criminals on autism and reprehensible behaviors of politicians on mental illness. Don’t buy into this societally acceptable behavior. To buy into it is to perpetuate it. Each time you do so you are drawing that line between us darker, deeper and wider inviting fear to take up residence, distancing yourself from autistics and/or people mental illness, making us “those people,” the ones othered. In turn we are feared. Remember, people in power can do strange things when they are afraid. Is this the kind of world you want your children to grow up in?

Source: Toxic Autism Awareness: Fact from Fiction? | Judy Endow

Autism Awareness Month

https://boren.blog/2017/04/01/navigating-autism-acceptance-month/

Autism puzzle piece

Let them stim

Corporate D&I

When people feel comfortable sharing their perspectives, diversity can be a competitive advantage; but you can’t have true diversity of perspective without visible diversity. If you’re visibly different from the person sitting next to you, those differences will have played a part in shaping previous interactions and experiences for both of you. As a result, you’ll approach solving problems differently, and together, you’ll make better decisions that don’t give undue privilege to one perspective. Visible diversity is a strong proxy for diversity of perspective.

Source: Monzo – Diversity and Inclusion at Monzo

Guys and bots

Even though many people see “guys” as a harmless, genderless word, not everybody does. You can think of the opposite word to guys (for example: gals or girls) and wonder if a group of men would feel comfortable being referred to as girls. When someone refers to you using a word that you don’t identify with, it’s easy to feel excluded from conversation or misidentified.

This little bot is a small way we can bake in our values, culture, and practices into a communication tool we use every day.

Source: 18F: Digital service delivery | Hacking inclusion: How we customized a bot to gently correct people who use the word ‘guys’

#NotSpecialNeeds

The 21st was Down Syndrome day, which saw the amplification of #NotSpecialNeeds by self-advocates. The effort was accompanied by this great video.

David Perry, a journalist covering disability and neurodiversity who is well-respected among self-advocates, wrote this piece for the occasion. Stop calling some needs special.

I recommend following Mr. Perry on Twitter at@Lollardfish. He is a great outlet for disability perspective.

Also, peruse the #NotSpecialNeeds and #SayTheWord hashtags.

I incorporated the video and article above into my post on The Segregation of Special. Check it out for more disability and neurodiversity perspective on “Special Needs”.

Let’s stop using the word Special. It is tired and hack and in the way of inclusion.

Trans women “male privilege”

Even those of us who spend years in relative comfort with our gender are socialized in a vastly more complex way than Adichie posits. When she says that we are “treated as male by the world,” that’s partly true, but ignores the other ways trans people are treated in Western society: as mentally disturbed fetish objects Hollywood can mine for cheap material. Small wonder I was never able to get rid of that sense of wrongness; it was always being reinforced by the world around me. This comic by Sophie Labelleillustrates (heh) the problem with movies like, say, Ace Ventura: Pet Detective, or The Hangover 2, or any number of other movies where the idea of transness is played for shock and/or laughs. Whether you know you’re trans or not, society has many ways of making sure you know the consequences of straying outside your prescribed gender.

Source: What Trans Women Have Is Far More Complicated Than ‘Male Privilege’

Autism discovery

I relate to this tale of autism self-discovery.

The discovery of my Asperger’s/autism spectrum status was eerily similar for me, except for the “frightening world” part (the world into which I awoke is colorful, peaceful, comforting, nurturing, supportive, validating, connected, and loving). This was only made possible by the loving, supportive, and comforting people and blogs I found early on, however. Otherwise, despite an increased understanding, the world might have become an even colder, pricklier place.

Like Neo in “The Matrix”, I, too, realized the truth about the world, the truth about my role and my place in it, and indeed….who I really was. I realized that my own interaction with-and responses to-the world were based on an illusion of my own: the illusion that I was neurotypical and the accompanying assumption that I “should”, then, be like the “rest of the world”.

I, too, realized that my life up until that moment had indeed been lived under false pretenses.

And in a way, I have to retrace my steps and make a correction to something I said above-the part about the “frightening world”. To be clear, it’s not the world of the Asperger’s/autism spectrum that I found frightening. I actually find the Asperger’s/autism spectrum world infinitely more peaceful and comforting. Rather, it’s the general world at large that eventually has some changing to do. Inclusion and accommodation benefit everyone.

The “rest of the” world became a bit more frightening to me. Not the anxiety-inducing kind…more of the appalling, disgusted kind. Suddenly, I had given myself permission to view the world through a raw and honest lens, and it revealed itself to be one of irrationality, obnoxiousness, boorishness, confusion, rash judgments, and harsh criticism. I gave my permission to be honest with myself about what I saw, and what I saw was unpleasant.

Source: Adult Asperger’s / autism discovery is kind of like the movie ‘The Matrix’… – the silent wave

Autism representation

Representation matters.

So when I found out that Julia was making the leap to television, I didn’t want to get too excited. But the new videos, released in preparation for her network debut in April, give me tentative hope. In particular, the videos demonstrate care and attention to showing non-autistic kids how to interact kindly with autistic friends and classmates - something that could make the new generation of little Sarahs a lot less isolated, anxious, and unhappy. That’s why watching Abby and Julia singing together makes me weep. My heart’s breaking for what could have been if this kind of programming had existed when I was growing up, but it’s also growing three sizes over the thought that it might not happen again in the future.

Whether Big Bird is learning that Julia didn’t mean to offend him when she didn’t acknowledge him right away, Elmo is using his stuffed animal to initiate a game with Julia and her bunny, or Abby is learning to interact and play with her on terms that work for both girls, there’s a distinct focus on learning to socialize with autistic people in these segments that’s been missing from most autism-related media so far. For many non-autistic kids, this will be the first time that they’ve seen autistic kids as equal human beings whose differences can be celebrated instead of shunned. For autistic kids, this isn’t just the first time they’ll be able to see someone like themselves on screen-it might be the first time they’ve ever seen anyone like them treasured by their peers. The inclusion of interactions like this in one of the most influential and beloved children’s television programs of all times has the power to change what happens in classrooms and on playgrounds across the world.

Source: The New Autistic Muppet Could Save People Like Me A Lifetime Of Pain

AP stylebook on gender-neutral pronouns

Ableism, unintentional inaccessibility, rights-based supports, universal design

Thread on ableism and unintentional inaccessibility that touches on rights-based supports and universal design. Relevant to flash talks and GMs.

Ableism threads

https://twitter.com/taylewd/status/84618203953974476

Variability and identity first

A specific manifestation of the argument that one autistic person cannot represent their community applies when considering the perspective of those people on the autism spectrum who don’t easily advocate for themselves. This includes people with intellectual disability and those who are non-speaking or who have extremely limited vocabulary. A great deal of autism research is focused on understanding and providing support specifically to those individuals, their families and their allies. How can we capture their opinions and filter those into our research?

A glib answer is to say that we should ask them. Of course this is true. We could all work harder to find effective ways to understand those autistic people who do not use traditional modes of communication. But this is a massive endeavour, and one in which I think we have only recently begun to make progress. In the meantime, I argue, talking to Autistic self-advocates and representatives of autistic-led organisations is a good starting place.

This isn’t to say that other perspectives should not also be taken into account. Parents, siblings, and people who provide professional support to people on the autism spectrum have a clear role to play. They can be proxy-advocates, with intimate knowledge of the likes and dislikes, strengths and needs of their loved ones. Furthermore, when developing new ways to provide support to autistic people, it is likely that parents and professionals will be involved in the delivery of those supports. Thus, we need to engage with these groups in their own right, as stakeholders in the design and outcomes of research.

BUT we are missng the point if we think doing so can replace engagement with autistic people themselves. Autistic people can elucidate aspects of the autistic experience which are common to many – what does it feel like to flap or stim? what does it feel like to be prevented from doing so? More than that however, I struggle to understand how anyone can claim to care about people with autism and intellectual disability if they don’t also respect people with autism and no intellectual disability. There is an interesting and important conversation to be had about how to better represent the voices of non-speaking autistics. We cannot begin to have this conversation if we don’t first demonstrate our respect for the wider neurodivergent community by listening to their voices, and amplifying them.

Source: Autistic voices, and the problem of the “vocal minority” | DART

Ableism, exclusion, and intersectionality

Newsroom diversity

Liz Spayd, the public editor of The New York Times, wrote an excellent piece noting that of the paper’s 20-plus political reporters during 2016, two were black, and none were Latino, Asian, or Native American. Susan Page of USA Todayresponded within minutes of my sending an initial email to say that the paper’s core political staff consisted of 10 women and eight men; and among those, two Latinos and one African-American. Their level of candor is both refreshing and rare. So far, several other news organizations have promised numbers but are still in the process of delivering.

So I’m going to put this out there for everyone to see. I’m looking for metrics on the racial and gender diversity of newsroom political teams-notes on how to share yours are below-and for us to self-report because it’s the right thing to do. We should not be ashamed by these numbers, whatever they are, but we should be deeply ashamed if we hide them.

Why write about diversity in newsrooms now?

Arguably, 2016 was the most racially contentious and gender-fraught election of the modern era. This election required extraordinary things of journalists. Sometimes we lived up to the challenge; but in many other ways, we missed the mark. When it comes to the diversity of our political reporting teams, it seems we can’t even find out what the mark is, because despite our proclaimed love affair with data, we won’t disclose our own.

Source: One question that turns courageous journalists into cowards – Columbia Journalism Review

Wheelchair-bound

Disability and dress codes

Autism mom

On the term “autism mom” and centering parents.

Toxic Masculinity, Predatory Men, and Male Paralysis

I work hard to practice what I preach and feel I make contributions small and even large to a kinder and more compassionate world - a world in which women and children need not ever fear men.

But even the best men walk in the wake of the worst men have given this world - the worst men continue to give to this world, and the females and children who must suffer for that.

Each man must moment by moment examine how he is culpable, where and how he stands in this world in relationship to females and children.

The dilemma of navigating the world as a man is couched in the unearned privilege, the potential for an abuse of unearned power that shouts out “First, do no harm.”

Source: Toxic Masculinity, Predatory Men, and Male Paralysis

Ableist gates

Ableist attendance policies

Event accessibility information

Thread on providing accessibility information for events.

https://ryelle.codes/2016/02/accessibility-for-wordcamps/

Analyzing inspiration porn

This thread analyzes an inspiration porn meme.

Prove your disability

#ThePricePWDPay, #CripTax, and #AcademicAbleism

Trans Broken Arm Syndrome

Would a licensed medical doctor with years of training really be unsure of what to do with a broken arm just because it was attached to a transgender person?

That’s the simple question at the heart of a complex issue dubbed “Trans Broken Arm Syndrome.” The term was coined by Naith Payton at British LGBT site Pink Newson July 9 to describe when “healthcare providers assume that all medical issues are a result of a person being trans. Everything – from mental health problems to, yes, broken arms.”

This phenomenon is just one of many difficulties transgender people face when seeking healthcare. Even for something as common as a cold, trans people frequently don’t receive appropriate medical care due to a combination of under-educated physicians, insurance coverage denials, and fear of discrimination.

Source: ‘Trans Broken Arm Syndrome’ and the way our healthcare system fails trans people | The Daily Dot

Blaming autism

Anthony Corona died after being placed with his head between his legs for twelve minutes. In the aftermath, the coronor at least partially blamed autism for his death.

I’m looking for the actual report, but this trend of blaming a diagnosis, rather than the violence visited on the disabled body, is both pernicious and pervasive. This kind of restraint is lethal far too often to far too many people, and in the aftermath, medical and law enforcement authorities fixate on the disability rather than the action (even should the action be justified). See both Ethan Saylor and Eric Garner for widely publicized examples.

Source: How Did We Get Into This Mess?: Coroner Blames Autism. for the death a Latino Autistic Student held Upsidedown

Race and racism in the Middle Ages

A lot of the excellent new work that has been done on race and racism in the Middle Ages-both in this series and also within academia-focuses either on telling the stories of people of color in the Middle Ages, or understanding how the racial categorizations of people of color came to be. But whiteness, as a racial category, was also under construction during this period. In medieval Britain, there was a centuries-long dispute over who had the right to feel British.

Over the course of the Middle Ages, ‘Britishness’-the right to claim British identity-became racial property. I call this racial identity a ‘property’ (an idea I’m taking from Cheryl I. Harris) to emphasize its status as an object of political power. Like real estate, Britishness in the Middle Ages became a thing to be owned. And it had value. By appropriating the anti-imperialist ideas of the very peoples they had subjugated, English writers represented themselves as the heroes of their political history.

Source: Feeling ‘British’ | The Public Medievalist

Autism and Moonlight

Everyone is human. Everyone is mundane. We are all just mundane in our own specific ways

“It’s not about homosexuality at all. It’s about what happens to you when you can’t love anybody. It doesn’t make a difference if you can’t love a woman or if you can’t love a man”).

For the autistic viewer, I Am Not Your Negro should serve as a strong reminder of the importance of self advocacy.

Source: Chiron, James Baldwin, and Autistic Experience | NOS Magazine

Neuroscience and self-esteem

Mindset marketing is not support.

Ableist kink and relationship anarchy

Disability shouldn’t define you

Tech spreads hate

One the monetization of hate.

On a website owned by white nationalist leader Richard Spencer, Ellis saw an ad for his engineering company, Optics for Hire, pop up on the screen – even though he had never knowingly bought the ad.

What Ellis had stumbled on was a little-known facet of the booming world of Internet advertising. Businesses using the latest in online advertising technology offered by Google, Yahoo and major competitors are also increasingly finding their ads placed alongside politically extreme and derogatory content.

That’s because the ad networks offered by Google, Yahoo and others can display ads on vast numbers of third-party websites based on people’s search and browsing histories. Although the strategy gives advertisers an unprecedented ability to reach customers who fit a narrow profile, it dramatically curtails their ability to control where their advertisements appear.

“No one has any idea where their ads are going,” said Ellis. In some cases, he added, ad networks “are monetizing hate.”

Source: For advertisers, algorithms can lead to unexpected exposure on sites spewing hate – The Washington Post

Inclusive work culture

In 2013, I wrote a lengthy rant about culture in tech workplaces. It was a symptom of larger problems I was experiencing at the time-I was a woman of color drowning in a tech bro’s paradise. Constant rumors and bullying caused people to form cliques; alcohol was the only escape most employees had from the hostility. It was impossible for me to be productive, and I wanted to understand why.

The only answer was culture. I couldn’t change culture at this company, so I wrote about it then left as soon as possible. Nonetheless, the experience stayed with me. How do companies, I continued to wonder, design workplace cultures that retain employees? I spent the next few years learning from my time at other companies. Now, I would like to share some of those learnings with you.

Recently, “culture” has become a buzzword in tech. Free beer, ping pong tables, and other material perks such as endless snacks and sleeping rooms are often paraded as reasons for prospective employees to join. I was swayed by these kinds of benefits at a few points in my career. Each time, I found myself burned out, overworked, and undervalued after the honeymoon period passed.

Fancy offices and alcohol-laden parties, it appears, can’t replace a lack of direction. Organizational culture is about more than materialism.

Source: Catt Small on Designing an Inclusive Workplace Culture | Design.blog

Majorities and edge cases

The Googles, Facebooks, and Twitters were conceived as services for all. And yet, they were unsurprisingly born prioritizing the needs of their creators: primarily able, young, white American men. While many of these companies are trying to march to a more inclusive tune, much of Silicon Valley still designs exclusively for that particular American man. The rest of us are an edge case, someone to deal with after the “majority,” and only if it’s convenient for this said “majority.”

If you design with a white male majority in mind, the math is easy. Inconvenience the fewest number of people, allow an escape hatch for emergencies. But what happens when someone we consider an edge case actually receives a rape threat?

Source: Ash Huang: How Much Poison Is Acceptable in Our Technology? | Design.blog

Designing for color blindness

The Mask You Live In – an exploration of American Masculinity

On the harm of “be a man”.

Acute and chronic

Backstopping

Backstopping is by nature a form of back-up support. It’s a tricky balance of recognizing that a potential crisis is arising and then giving me a chance to deal with it before stepping in to help or offer support.

Source: Backstopping: Supporting the Autistic Person in Your Life | Musings of an Aspie

Meritocracy myth

Thread.

The Pipeline Problem and the Meritocracy Myth

Transgender census

Online safety guides

http://geekfeminism.wikia.com/wiki/Online_harassment

https://onlinesafety.feministfrequency.com/en/

https://www.adl.org/cyber-safety-action-guide

http://smartprivacy.tumblr.com/buy-it-now

Resisting exclusion

Some backstory on how my town (Dripping Springs) resisted exclusion. Seeing some folks slowly change their minds was heartening.

https://twitter.com/many_stripes/status/846434938538901505

Sensory overload

End the awkward

Wheelchair flow in NYC

Burnt Out: Experiences of Women on the Autism Spectrum

Successful to Burnt Out features women who’ve considered ourselves successful in our primary role. We’ve had to slow down or stop working. Some of us didn’t know why life became exponentially harder. Why we had burnt out. We realised our limitations and finally put names to them. Anxiety. Depression. Late in life, we found out it was also from being on the Autism Spectrum. How have we dealt with being a shell of what we once were? How did we go from being successful to burnt out? Where are we now in life’s journey?

Abianac, Karletta; Abbott, Lorraine; Isaacs, Kathy; Eartharcher, Laina; Marxon, Liz (2017-04-02). Successful to Burnt Out: Experiences of Women on the Autism Spectrum (I’ve been there too Darl Book 1) (Kindle Locations 30-34). Self Published. Kindle Edition.

Spoons, poverty, and disability

Thread.

#Chronicloaf #FilmDis

Racism + capitalism + ableism + education + the violence of the security state

Social/medical model misery calculator

One of the first things I wrote on my blog that came straight out of my head, and wasn’t a commentary on something else, was an idea I called the Misery Calculator.

It grew out my attempt to more fully understand one of the core ideas of disability culture … that the suffering in disability comes from ableism and external barriers, not from our disabilities themselves. I accepted this for years. Yet, I always found that there were some aspects of my actual disabilities that were hard to live with, and couldn’t be blamed on anything or anyone else but my own physical condition. When I got into disability blogging, I found others in the disability community, particularly “chronically ill” people and “spoonies,” who seemed to have the same experience, somewhere between the Medical and Social Models of disability. A perfectly accessible, non-ableist world would be a lot better in a thousand ways, but at least some of our disabilities would still be there, causing at least some amount of misery.

So I came up with six measures of “misery” associated with disabilities. Three of them are basically “medical,” existing in your own body, and three are “social,” factors that exist in the world outside of yourself. For this post, I’ve tweaked the categories and definitions a little, but they’re basically the same. I’ve also decided to change the name of the thing to Disability Calculator. Here are the measures, roughly defined:

Medical

Pain / Illness
How much do you hurt and / or feel like garbage?

Stamina / “Spoons”
How much energy do you have to do things?

Physical & Mental Functioning
How well or poorly is your body and / or mind operating?

Social

Physical Barriers
How often are you blocked or inconvenienced by physical barriers?

Lack Of Tools & Supports
To what degree do you have or lack the tools and supports you need, and do they work right?

Ableism
How much does disability prejudice deprive you of opportunities and / or add to your stress?

This corresponds to the Medical Model / Social Model idea. The six point set of measures, divided into two broad categories, allow you to get a feel for how much each “model” really describes your disability experience. You also get a 0 to 30 point measure of how much overall disability you experience, both Medical and Social.

Source: Misery Calculator: Reheated, Renamed — Disability Thinking

Data bias

Presentation accessibility and comic sans

The day my sister, Jessica, discovered Comic Sans, her entire world changed. She’s dyslexic and struggled through school until she was finally diagnosed in her early twenties, enabling her to build up a personal set of tools for navigating the written world.

“For me, being able to use Comic Sans is similar to a mobility aid, or a visual aid, or a hearing aid,” she tells me while we’re both visiting our family in Maryland. “I have other ways of writing and reading, but they’re not like they are for someone who’s not dyslexic.”

Source: Hating Comic Sans Is Ableist – The Establishment

Navigating Autism Acceptance Month and Autism Myths

Autism Speaks

April is a tough month for #ActuallyAutistic people. We do not support Autism Speaks or the Light It Up Blue campaign. Many autistics consider Autism Speaks to be a eugenicist hate group that diverts resources, talks over autistic people, spreads harmful “awareness”, and funds research and practices that abuse and kill us. April is a month of disinformation, and Autism Speaks is responsible for much of it.

This video explains what’s wrong with Autism Speaks.

Here are a few pieces detailing the troubled history of Autism Speaks.

Support ASAN and Autism Women

Instead of supporting Autism Speaks, support The Autistic Self-Advocacy Network (ASAN) and Autism Women’s Network.

Puzzle Pieces

Autistic people are not puzzle pieces. Instead of the puzzle piece propagated by Autism Speaks, use the neurodiversity rainbow infinity symbol.

Acceptance > Awareness

Autism Acceptance (or Appreciation) Month is preferred over Autism Awareness Month. acceptance > awareness

Hashtags

Instead of promoting Autism Speaks, Light It Up Blue, and puzzle pieces, promote these.

Identity-First Language

Like most neurodiversity and disability communities, we prefer identity-first language, not person-first language. I’m autistic, not a person with autism. Autistic is my identity. I’m a disabled person, not a person with disabilities. Disabled is my identity.

Autism Is Not a Disease

Autism is not a disease. Vaccines do not cause autism. There is no cure for autism, nor do autistic people want to be cured. Autism is an integral part of our being. Removing it would be a death of self. Autism is an identity and a culture. It is a valuable and natural part of human diversity.

ABA

ABA (Applied Behaviour Analysis) is abuse. It is torture. There is no excusing it. We do not condone it. Autistic people are not neurotypical and should not and cannot be made neurotypical. Trying to pass as neurotypical comes at great cost and leads to burnout. Being forced to pass leads to PTSD.

#ActuallyAutistic Tweets

This Twitter moment collects Autism Acceptance Month 2017 tweets made by autistic people. These are the voices that should be centered during acceptance month.

We have enough “awareness”. The time is now for acceptance and inclusion.

More Resources