Autism, empathy, and the mind-blindness of everyday people

February 2, 2015

Hello! I’ve completed graduate school, and I’m now Karla McLaren, M.Ed! My master’s degree is in education and curriculum design with a concentration in linguistic anthropology, and my focus is on autism, empathy, disability rights, and human rights.

Over the next few months, I’m going to be posting pieces of my own research and the excellent research I’ve found. For instance, if you’d like to explore healthier and more empathic ways to engage with the autistic people in your life right now, check out my Matrix of Autistic Sociality page!

A note about the identity-first language I use: In my academic work, I intentionally use identity-first language (autistic person) instead of person-first language (person with autism). Person-first language is an attempt to foreground the person first, and to add the disability as an appendage, i.e., “person with learning disabilities.”

Though often well meaning, person-first language is a tactic that actually tends to underscore rather than sanitize problematic conditions. For instance, we would not say “man with handsomeness,” “woman with French ancestry,” or “person who is funny;” person-first language tends to be used only when the condition referred to is temporary, feared, or undesirable.

Identity-first language challenges the idea that disabilities are something to hide, fear, or be ashamed of.

As Ellen Brantlinger (2009) writes, person-first language “is meant to convey respect for those labeled; however, harmful naming and sorting practices continue regardless of new and improved classifications” (p. 407).

Person-first language has also been very controversial in disability rights circles, and is not the accepted terminology for many disabled people themselves, especially for many members of the blind, deaf, and autistic communities. In these communities, disability-positive and identity-first language is often preferred, i.e. blind person, Deaf person, and autistic person, or simply, autistic (see Bagatell, 2010; Brown, 2011; Cohen-Rottenberg, 2012, and Sinclair, 2009). In each case, these authors suggest that the preferences of disabled individuals should take precedence over any naming conventions.

This means that — even though I intentionally use identity-first language as a sign of solidarity with the disability rights and human rights movements — if you as a disabled person requested different terminology when we were together, then I would certainly use whatever terminology you preferred.

Autism, empathy, and the mind-blindness of everyday people*

Back in 2006, I read dozens of books about autism as I prepared myself for a new job, with my new job came a new insurance plan, I’m thorough and read the the e111 benefits for autisim. As an academic liaison for 22 autistic college students I would need to know everything about the e111’s offered. These books asserted that autistic people are socially impaired because they are “mind-blind” and therefore unempathic.

This idea is championed by many people, including British psychopathology researcher Simon Baron-Cohen, who hypothesizes that autism involves a lack of function in conjectural brain structures called “mirror neurons.” These neurons are alleged to help us map the movements (and possibly the emotions) of others onto our own bodies so that we can feel and understand them viscerally.

In this model, empathy arises when we can put ourselves physically (albeit imaginatively) into the place of others, and see and feel things from their standpoint.

As a lifelong hyper-empath (a person who is intensely sensitive to social, emotional, and sensory input), I wondered if I would be a distressing presence in these students’ lives, since we seemed to be diametric opposites: I had too much empathy, and they had too little (if you think this is sounding like the beginning of a fairy tale, you’d be right!). Therefore, I entered into my relationships with these students very carefully and watched closely for this mind-blindness and lack of empathy.

However, I didn’t see either one.

What I saw in these students instead was hypersensitivity – painful hypersensitivity that caused them to be persistently confused and disoriented about their surroundings and the people around them. It wasn’t that they didn’t care or weren’t empathic; not at all. It was that life was too loud and too intense, full of static and confusion (this idea would soon be called the Intense World theory of autism, see Markram, Rinaldi, & Markram, 2007).

I had not landed in a world of aliens; I had dropped right into a community of fellow hyper-empaths who became my friends.

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.

Though I was happy to have found my new friends, I was horrified to realize that all of those books about autism were not only wrong; they were dead wrong. Since that time, I’ve worked to understand autism, empathy, neurodiversity (see my colleague Nick Walker’s excellent description), the social construction of normality, stigma, the disability rights movement, and the complex multitude of issues facing autistic people and the autism community as a whole.

A new and inclusive model of empathy

I’ve also studied emotions and empathy, and created a six-part model of empathy that explicitly includes autistic people as hyper-empaths who receive incredible amounts of sensory information, but may have trouble deciphering and organizing it (again, I dig).

This new model of empathy (see The Art of Empathy: A Complete Guide to Life’s Most Essential Skill) had to be built at the margins of the scientific community, because medicalized theories about autistic people and empathy delays are set in stone – to the extent that (here in the United States, at least) children who display every other feature of autism, but who also exhibit typical empathy behaviors, are often excluded from the diagnosis and not provided with support.

Our current theorizing about autism and empathy is very troubling, and more troubling still is that it is deeply dehumanizing. Many researchers, Baron-Cohen included, conflate a lack of empathy with a lack of humanity, and even with cruelty (or more melodramatically, with evil) – and this idea has spread like a virus.

In my relatively short time in the autism community, I have witnessed countless instances where autistic people were called out as frauds (you can’t be autistic!) because: they can make eye contact; they can speak and/or write; they have and can understand emotions; they have empathy; they can understand humor, sarcasm, and irony; they can understand analogy and metaphor; they have friends; they have careers; they have lovers and spouses; and because they have beloved children.

Autistic people are continually discounted and dehumanized, and while there is a small but growing group of researchers working to challenge the dehumanization of autistic people, the reigning theories about autism and empathy are deeply troubling – and profoundly unempathic.

The continual confusion about empathy

It’s important to note that empathy itself is not yet understood clearly; at this point in our understanding, empathy is often seen as a trait that exists – or doesn’t exist – inside a person. Trait empathy is a factor, it’s true, but empathy is also a relational skill that more robustly exists between people.

No matter how much trait empathy we have, our empathy can drop to near-zero when we interact with someone unusual or unexpected. We’ve all experienced this empathy drop when a person or group we don’t agree with appears on the news; in fact, it’s completely normal to believe that people who are unlike us are suspicious and incompetent (see my Facebook piece about Edward O. Wilson’s concept of toxic groupishness). It’s nearly automatic for us to drop our empathy in the presence of difference.

We are all, every day, engaged in mind-blindness against people we do not agree with or comprehend. We are all unempathic about some people and some groups, and it is a normal feature of human nature to be unempathic toward people who are not like us. This is why it’s so important for awake people to challenge stereotyping and prejudice.

The continual stereotyping and prejudice against autistic people — much of which is not challenged because experts are saying it so forcefully — is creating massive problems for autistic people, and for all of us. Our current biomedical approach to autism, which scans, studies, and reports on autistic people in terms of their differences, deficits, and disorders is actually making autistic people’s lives more difficult and their futures bleaker because we’re teaching people that autistic people are not like us.

These unempathic theories about autism are training us not to empathize with autistic people, and they’re making the lives of autistic people less workable, less livable, and less safe. But luckily, we can all rise above any kind of bad training.

A humane vision of autistic humanity

My friend and colleague, Nick Walker, wrote this wonderful definition of autism, from the inside out. Nick’s definition is now my go-to definition, because it speaks clearly and directly to the actual lived experience of autism. Go read it. Learn it. Know it. Live it.

And compare it to almost everything else you see and hear about autism. When you can read media stories about autism with a critical eye, you’ll begin to notice the shocking — yet totally unchallenged — dehumanization of autistic people.

And when you bring your critical eye to allegedly supportive fundraising organizations, you’ll see that many of them portray autism as a tragic condition, as an ominous, child-stealing calamity, or as an epidemic (though autism is not a disease, nor is it contagious) — while autistic people are portrayed as enigmatic and not-quite-human entities, and predominantly as nonspeaking savants or as helpless, big-eyed children.

Also bring your critical eye to this: The most common autism image is not that of a child or even of a human being; it is “a jigsaw puzzle – with a piece missing” (Bagatell, 2010, p. 44), or a single puzzle piece detached from its puzzle — blue and lifeless, isolated and out of place.

That is grotesquely dehumanizing imagery, but it’s sold to us as a fun way to represent our support of autistic people. Sorry neither. Autism isn’t a puzzle, and autistic people are not puzzle pieces. They’re fully human beings with their own lives, their own hearts, their own voices (even if they are nonspeaking or minimally verbal, they can communicate), and their own ways of representing themselves.

Today in 2015, as I watch my autistic friends creating autism-positive spaces and working for social justice for all disabled people, I witness their gorgeous and deep empathy, their boundless sensitivity, and their love for humanity. They have risen above the dehumanization of biomedical vision, and they can teach us more about empathy than we have ever known before.

Autistic people, pathologized and erased for so long by the mind-blindness of researchers and everyday people, are the only people who can help us truly understand autism from the inside out. It is time for us to embrace autistic people as valuable, worthwhile, and fully human beings with valid and hard-won wisdom.

That’s the empathic thing to do.

References

Bagatell, N. (2007). Orchestrating voices: Autism, identity and the power of discourse. Disability & Society, 22(4), 413-426.

Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38(1), 33-55.

Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press.

Brantlinger, E. (2009). Impediments to social justice: Hierarchy, science, faith, and imposed identity (disability classification). In W. Ayers, T. Quinn, & D. Stovall (Eds.), Handbook of Social Justice in Education. New York, NY: Routledge.

Brown, L. (2012). Person-First Language: Why it Matters (The Significance of Semantics). Retrieved from http://www.thinkingautismguide.com/2011/11/person-first-language-why-it-matters.html

Cohen-Rottenberg, R. (2012). The Problem with Person-First Language: What’s Wrong with This Picture? Retrieved from http://www.disabilityandrepresentation.com/2012/05/30/the-problem-with-person-first-language-whats-wrong-with-this-picture/

Markram, H., Rinaldi, T., & Markram, K. (2007). The intense world syndrome – an alternative hypothesis for autism. Frontiers of Neuroscience. 1(1). 77-96.

Sinclair, J. (2009). Why I dislike “person first” language. Retrieved from http://web.archive.org/web/20080616063934/http://web.syr.edu/~jisincla/person_first.htm

Walker, N. (2014). Neurodiversity: Some Basic Terms & Definitions. Retrieved from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

Walker, N. (2014). What is Autism? Retrieved from http://neurocosmopolitanism.com/what-is-autism/

Wilson, E. O. (2012). The Social Conquest of Earth. New York, NY: WW Norton & Company.

*Parts of this essay first appeared in New Idealist Magazine.

20 Comments

Michael Forbes Wilcox February 2, 2015 at 3:07 pm

Wonderful, Karla. This deserves to be shared widely, and I will do my part.

As you know, I am familiar with your story and with Nick’s work. This is a wonderful essay because it brings together disparate pieces that I had been aware of, and you have a great list of resources here.

I can’t remember if you and I talked about my conversation with Simon Baron-Cohen. I think not. In any case, I had a chance to have a private conversation with him when he was in Boston this past autumn. He and I were speakers at the same conference. As you know, he has been widely vilified in the autistic community for the attitudes you mention. And I, of course, disagree with much of what he has said. Still, I detected a softening of his attitude. It’s possible that he has grown some empathy.

He said that the work he did on “mind-blindness” was nearly 40 years ago, before today’s understanding of the broad range of abilities that autistic people have (my wording). He said that his conclusions really apply mostly to those on the “low-functioning” (ugh) end of the “spectrum” (ugh). Meaning, I guess, those who score low on IQ tests.

His latest “thing” seems to be autism as extreme maleness. Oy!

Karla February 2, 2015 at 8:21 pm

Hi Michael! Thanks for your kind words. And oy, those poor “low functioning” autistic people. They get blamed for a lot of stuff, and they also get a lot of otherwise poor theorizing hung off of them. Yeesh.

I’m still waiting, as our friend Rachel says, for more high functioning autism researchers. ; )

And ugh on the extreme male brain theory. That is presented as a questionable hypothesis (thankfully) in much of the research — by the high functioning researchers, that is. Gender essentialist ideas are so easy to knock down that I wonder why people even attempt them? For goodness sake, researchers, get some basic sociological education under your belt before you attempt to describe vulnerable minority populations.

It may help to know that canny researchers can peruse an autism article, see how SBC and Wing are treated, and know what to expect from the ensuing study. Mentioning SBC or Wing without calling them out tells me troubling things about an autism researcher’s bona fides, historical awareness, and understanding of disability rights and social justice, bam!

Markierungen 02/07/2015 - Snippets February 6, 2015 at 8:35 pm

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Leigh Waite February 7, 2015 at 10:50 pm

Thank you for this very interesting post I had posted on my Facebook Page. As the mother of a 12 year old boy with autism ( sorry… I fell “autistic boy” makes it sound like his autism is the biggest part of him where he is so much more than that ) this article make so much sense to me… how I wish you were in New Zealand… my son is gentle, funny, is VERY empathetic and sadly…. very misunderstood. I would love him to have a buddy ( how much of that is for HIM or for ME … feeling that that is the “be all end all” ) I havent figured out… I know he gets excited when kids visit yet once theyre here he all but ignores them, preferring to do his own “thing” which on a positive side not altogether a bad thing as he doesnt rely on others to make his life complete yet to have a group gathering ( I have tried to start one ) I do believe would benefit him greatly.. although happy in his World Im sure he thinks he is the only one at times. One thing I have noticed with other children with autism is that they are just so accepting. They dont care what a person looks like, they could be purple and have one eye in the middle of their forehead… they “just are” they do not prejudice … they truly are beautiful Souls. Now Im raving but once again… Thank you… I shall be checking out some some of your references…. Leigh

Karla February 8, 2015 at 9:01 pm

Hello Leigh and welcome! Whatever you call your son, he’s awesome. I’m thinking of re-naming autism as awesome-tism. There’s so much awful information out there about autism that it is no wonder people want to distance themselves from it. You and your son can use whatever terminology you like, but I’d like to question the idea that autism is something to be sidled away from.

If you’d like to see a fun example of autism pride, there’s a delightful young girl in England, Rosie King, whose family has two autistic children. Her story is so sweet, and I love the way her nonspeaking brother’s needs are so joyfully met.

If you’d like to find out about autism-positive, neurodiversity resources in New Zealand, let me know. The online autism community is a vibrant, well-connected, and amazingly empathic community. After years in this community, when I talk about someone as autistic, I mean that I like them unreservedly. Autism no longer has any negative connotations for me; it’s just a different operating system. Yay!

Adult WITH autism February 8, 2015 at 3:02 pm

I disagree. Saying someone IS autistic means thier autism defines them and you never look past that. Saying some HAS autism means it is just a part of who they are but it isn’t everything. It would be like saying someone is cancerous rather than they have cancer. Cancer isn’t always treatable or cureable and it may never go away. Should we start saying that they are cancerous. As an a person with autism I don’t want to be defined by it. I also don’t want to BE bipolar, I have bipolar.

Karla February 9, 2015 at 7:59 am

Hello, adult with autism! Of course you get to have control over what you are called and how you interact with autism and bipolar.

My intentional use of identity-first language is a feature of not just my academic work, but also my social justice work and my disability rights and “crip theory” approach to what’s called the “social model of disability.” In the social model, we ask: If the social world were created around your needs (as it is for “normal” people), would you in fact be disabled? Or are you disabled because you have been placed into a category where you body, your mind, your preferences, your needs, your communication, your social awareness, and even your thoughts have been presented as a pathology and as something to avoid, change, hide, or extinguish?

The neurodiversity movement, which was created in the autism community in the 1990s, is a part of the social model of disability movement, and it has roots in the Gay Pride movement and in the Deaf Pride movement. These pride movements have had to arise because society could not recognize the worth or value of these people when left to its own devices.

I have often made this analogy, but before 1973, homosexuality was classified as a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM).

Before 1973, parents didn’t need to be homophobes or ill-intentioned people to wish like anything for their child not to be gay. Gayness wasn’t accepted, and parents had no way to see example of openly gay, lesbian, bisexual, or trans people living happy lives. Homosexuality was seen as a social ill, and a disease — and not as a natural aspect of human gender reality. Now we understand that homosexuality and gender diversity are regular features of human sexuality, and the horrendous practice of gay reparation therapy is finally being publicly censured and legislated out of existence.

This doesn’t mean that in our sexist, gender essentialist, and homophobic society that suddenly being gay, lesbian, bisexual, intersex, gender-fluid, trans, or queer has suddenly become a lifetime party of sweetness and delight. We still have a long way to go. But there are now protections in place to call out, legislate, and challenge homophobia.

Now, we understand how wrong we were, and how little we knew — and we who are capable of doing so are learning to be less prejudiced — and to make room for the fact of gender diversity.

This same movement is occurring in the Autistic Pride movement, where the model of autism as a disease, and as an unwanted, broken, scary, dehumanizing thing is being challenged. Because autism isn’t a disease. It has no clear genetic markers, and though stories come out every four or five days about what “causes” autism, they are seen as mostly a nasty, ableist joke in the more hip research community.

There’s a wonderful impromptu peer review committee that convenes in the international online autism community when these pathetic studies are released, and these critiques are not just grounded, but they’re often scathingly funny as well.

The neurodiversity paradigm is replacing the pathology paradigm — slowly, in small pockets of the research community, in small pockets of the education community, and in ever-increasing numbers in the parent community. Read the links in the post about why identity-first language is used.

Read Nick Walker’s definition of autism and neurodiversity. There is a new paradigm arising, and many people are calling out the ableism, essentialism, and “tyranny of the norm” that are making autistic people’s lives less happy, less meaningful, less functional, and less safe.

Autism is a disability, and there are many aspects of autism that need to be figured out and worked around. The same is true for other neurodiverse conditions such as ADHD, learning disabilities, bipolar, Tourette’s, and so forth. The pathology paradigm has created millions of autistic people who feel deeply unwelcome in the world, who are treated as second-class citizens or outsiders, and who are invited to feel ashamed of and separate from a central feature of their identities.

This is true for any minority until members of that minority stand up and challenge the dehumanization.

No matter where autism came from, it is here and has been here for centuries. The pathology paradigm is creating untold misery and teaching people to look in the wrong place in the wrong way for the wrong thing with the wrong intentions. The neurodiversity paradigm is working to help autistic people live as their own unique selves in a harsh world of normal-appearing bigots.

My studies of this movement have been life-changing for me. I am a neurodivergent person, and I’ve learned to own it completely, because these features of my neurology are central to all of my functioning.

I am not a person with dysnomia, dysgraphia, hyperactivity, or major depression and dysthymia.

I am dysgraphic.

I am dysnomic.

I have intense amounts of energy and an ability to focus on many things at once (the hyperactivity moniker is problematic and I can’t embrace it because it’s just steaming with pathology paradigm: Attention Deficit Hyperactivity Disorder, GAH! How much hatred of neurodivergent kids lives in that one label?). A LOT.

And my brain gets an A+ in depression. Yay!!! (there’s not really a fabulous Mad Pride way to claim my depressions: I am Depressive!!! No! It sounds as if I go into a room and shut down all happiness, like I’ve got a portable grey could of doom over me). ; )

I understand being “a person with” any of these conditions. I do. And I’m telling you that there are other possibilities, and other ways of claiming your unique condition — even if it is a pain in the ass every now and then.

Humans are an extremely imperfect, warring, clannish, prejudiced, and bigoted species. But they can learn. In the neurodiversity paradigm, we are flying our freak flags high so that the children coming up behind us don’t have to live in the hell we did.

Welcome, adult with autism. I celebrate you however you want to be identified.

Linda Kohanov February 24, 2015 at 3:09 pm

I’ve had a number of people diagnosed with different forms of autism attend our equine-facilitated human development workshops over the years. They are very interested in the information we discuss on the messages behind emotions, based in part by Karla’s marvelous work on emotions. These clients often act as if an intense shroud of confusion has been lifted when we discuss how most people are incongruent. In other words, “neurotypicals” are taught to wear a mask of a socially acceptable emotion and suppress/hide what they’re really feeling in order to conform. Some autistic people and other highly sensitive people are not confused by emotions so much as confused by the mixed signals they get from rooms full of incongruent people who have been more easily socialized by a system that rewards those who can hide their authentic emotions and intentions.

One of my autistic clients told me that those insulting remedial pictures of faces portraying emotions (a smiling face for “happy; a frowning face for “sad” etc.) that are used to teach autistic people how to recognize emotions in humans made no sense to her because she knew that a smiling face did not always mean the person was happy. Sometimes a smiling person is sad, afraid or angry. This suggests that some autistic people are incredible empaths, able to feel the emotion behind the mask.

For this reason, my autistic clients are relieved to be in the presence of horses, who can also sense hidden emotions in their human handlers. Horses will generally either walk away from a person who is incongruent, or act out the hidden emotion. This is not a form of psychic magic. A person who is smiling while afraid or angry exhibits elevated blood pressure, stiff body posture and more shallow breathing. Horses are reading these signs of heightened arousal and responding accordingly. They are not fooled by human facial expressions that mimic a socially acceptable emotion.

Karla February 24, 2015 at 9:08 pm

Thanks so much for this Linda. In my research study on autism social skills training programs, so many people called out the offensively simple cartoon face or “face-reading” aspect of emotion training for autistic people. Faces are really not reliable indicators of emotions, since, as you say, neurotypical emotional functioning is based on emotional subterfuge in a great number of emotional categories.

My own emotional education as a little hyper-empath was slowed down immeasurably by the way neurotypicals are trained to speak about and identify emotions. I honestly thought of humans as a different species from me for many years because their emotional functioning was so bizarre. But then I figured out that they were feeling the same emotions as I and my animals friends were — they were just taught to lie about most of them!

I think that autistic people are sort of the canaries in the coal mine of human emotional dysfunction. They are showing us just how absurd our understanding of emotions is! And empathy — oof. For anyone to spend any time whatsoever with autistic people — and to not identify them as hyper-empaths — it’s astonishing, and it’s an indication of how little we understand about empathy.

Thank you for working to bring emotions and empathy out of the shadows of eons (epochs?) of emotional repression. Thank you for your work!

Michael Forbes Wilcox February 25, 2015 at 7:15 am

Karla, great follow-up comments with wonderful responses from you.

I especially like the one by Linda about horses. Being a horse-lover (and owner), I totally relate to what she is saying. By extension, the same is true, of course, for other animals, who are also not fooled by social conventions such as facial expressions.

Although I have only known about my being autistic for a few years now (and praise be! for that knowledge), I have long had a special relationship with animals. They seem to trust me because I openly love them and read them as being honest, as they do me.

Looking back, I can recall many instances of (what I would now call neurotypical) friends being astounded at how animals would react to me. In one house, for example, a cat came over to me to be petted and was purring when my friend came into the room with her mouth open. “She usually runs the other way when there are strangers in the room!”

And another time when I was talking with a dog, and a friend remarked, “You’re the only person I know who asks a dog a question and then waits for the answer.” I laughed and told the story to another friend, who said, “Yes, and you’re the only person I know who would understand the answer!”

I could go on with stories about things I’ve done with horses that have amazed people, but you get my drift. It’s really about respect, love, and the equality of friendship.

One of the joyous things about being autistic is that I do not (cannot) hide my emotions from myself. The downside of that is that displaying strong feelings can lead to dysfunctional reactions from others, and so I have had to learn emotional regulation (meaning, when it is necessary to suppress or hide my instinctual reaction so as not to upset another person). But I do believe this is an example of empathy in action; understanding in advance what is likely to be upsetting to someone and wanting to be kind. It’s a very intricate dance we do to get by in an alien world.

Karla February 25, 2015 at 9:56 am

Thank you Michael! And of course you have to wait for dogs to answer questions. They’re philosophers. ; )

Thanks for making this alien world a kinder place.

autistic adult February 26, 2015 at 9:30 am

I have been saying the same for the last 30 years–the difference is, I am autistic, so who would believe me??? I still identify as autistic, or person with autism…mostly others cannot tell, when overstimulated I can now hide! 🙂

Karla February 26, 2015 at 10:05 am

I would believe you!

Dawn-joy Leong May 3, 2015 at 2:07 pm

Thank you for such penetrating insight into a complex subject. I am autistic (Asperger’s) and I identify as an autist/Aspie. Some people say “autism” does not fully encompass the person, but my view is this depends on what the term “autism” defines for that individual. To me, “autism” defines a plethora of wonderful dimensions as well as intense struggles, especially when juxtaposed against the non-autistic systems and structures of the wider world. All of these, including the specific features of my own autism, indeed encompass who I am. So, yes, I am autistic and I am happy to be. My own research and praxis revolves around sensory aspects and empathic corridors. Your article resonates with my own findings – from lived experience as well as research trajectories. Thank you again for this powerful piece!

Karla May 3, 2015 at 8:23 pm

Welcome Dawn-joy! My master’s thesis on autism and enforced normalization training was just posted online, and you might like to read it.

Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction

Dawn-joy Leong July 5, 2015 at 3:56 pm

Thank you for sharing, Karla!

Melanie Atkinson May 26, 2015 at 4:11 pm

When faced with the multiplicity of individual beings, there is no primordial “mindset,” the model upon which “all minds are perhaps sketched, nourished, and measured. An autistic person perceives the world in a different way than someone who does not have autism, and it is quite meaningless to say which perception is more accurate, because to do so we would need to have the criterion of “correct perception,” which does not exist.

My question concerns Walker’s definition of autism. How he did come to the heart of the matter when he writes that “autistic brains are characterized by “particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.”

Walker’s attempts to relate autistic behavior to different variations of personality and intelligence demonstrate a unique approach to the understanding of autism. I began to read the essays in his website, and he reveals a particular originality of thought and experience. But only insofar as the proponents of Neurodiversity constitute such a modest little tribe as is now the case it is doubly important that they agree among themselves.

I myself am the mother of an eleven-year-old beautiful girl in the spectrum. She has just been diagnosed with “Asperger Syndrome.” How can I convey this to you? She has superior intelligence, is sensitive to noise and smells, and is musically gifted. She spends most of her time in her room, has no friends. She is ignored by the many at school, oppressed by the diagnosis of a “disorder” we both quite not understand. As a mother I will employ any means, dear Karla, to help her. How can I get involved? And learn more about Neurodiversity?

Karla May 29, 2015 at 11:01 am

Hello Melanie, and welcome.

The neurodiversity movement is wonderfully active and fluid, and it’s a growing, living theory. It’s also directly connected to social justice, and there will not be a great deal of perfect agreement until the theory solidifies. Agreement is actually the death of theory. Nick is possibly the most active theorist in the movement, but there are many others. There is also a wonderful book coming out this year by science journalist Steve Silberman, called Neurotribes, which I have pre-ordered and am looking forward to intently.

There is a great deal of research on autism that dovetails into the ND framework, most notably the Markram’s “Intense World Theory,” which is referenced below. You don’t hear about it in the mainstream, because most mainstream narratives are pathology-based and complicit in the dehumanization of autistic people. Possibly the worst examples come from the largest organization, Autism Speaks, which is a massive fundraising juggernaut that blots out autistic voices and presents autism as a tragedy. That’s great for fundraising, but it’s very damaging for everyone and everything else.

As for your daughter and her new diagnosis, welcome to the tribe of the neurodivergent! it is a difficult thing to be in a world full of neurotypical privilege and enforced conformity, but her tribe exists. Probably the most important thing you can do is to find autistic adults who can help her understand herself, her unique way of making friends and being a friend, and her unique needs.

Some good places to start:

We Are Like Your Child

AutistiKids

The Thinking Person’s Guide to Autism

Mama Be Good

Emma’s Hope Book
(Emma is a 13 year old autistic blogger who is looking for friends on Facebook)

The neurodiversity movement is small, but it’s gaining ground. My thesis: Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction is a contribution to the ND canon. You may want to look at it, because I’ll bet you even money that social skills courses will be lobbed at your daughter. Take care with them. The data suggest that they’re not worthwhile.

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