Sunday, March 31, 2019

Alexithymia and Autism: When everyone is speaking a different language

Sonny Hallett
medium.com/@sonyahallett

An attempt to figure out and convey a feeling
from a couple of years ago.

[image: Drawing of a half-Chinese, half-white person with
medium-short Blond hair swept back from their face, wearing
glasses, and looking over their right shoulder. Two white
spectral figures rise from behind and above the person.]
I’ve been thinking about alexithymia lately. It’s a concept that seems to be gaining increasing recognition, describing the inability to identify and describe one’s emotions.

Asides from the fact that emotions are difficult and most people might be bad at describing complex ones, I’ve also been reading a lot more references to how many autistic people have alexithymia. I’m not disputing that this is probably true: I personally have and do struggle with identifying and describing exactly what I’m feeling, despite being very into words. Ever since I was very little, up to today, whenever I have strong or difficult feelings I want to communicate, my first thought is often to put it into a drawing (for some years in my teens I also tried to do this through complicated poetic metaphors), most of which still frustratingly failed to adequately get what I needed across, or even clarify it for myself—so in that sense alexithymia is a useful concept to give a name to this difficulty. However, I do have a problem with how it’s often framed or thought about.

The way that alexithymia is sometimes talked about refers to it like one of the many other ‘deficits’ or traits someone might list in a deficit-based description of autism: ‘Why does this person have alexithymia?’ ‘Oh because they’re autistic.’ I don’t think this is a satisfactory explanation (to be fair I feel this is true of any listing of traits — explanations and motivations are far more informative), and is a pretty unhelpful end-point for any discussion aimed at being helpful or improving understanding.

Given that we are seeing increasing numbers of studies supporting idea of the double empathy problem, and more generally support for there being differences rather than deficits with communication between autistic and allistic people, surely a far more nuanced and helpful explanation would be: autistic people often find it hard to identify and describe our emotions partly because we have not been exposed to the right language to learn how to do it.
unknown_translation
It can sometimes feel like we need a translator to help the
words match up with the feelings in a way that makes sense

[Image: Old PC Windows alert with the words “Unknown
Translation” and a button labled “OK”] 
No one is born able to talk about their emotions. We also know that speakers of different languages, or even the same language over time, can describe supposedly the same emotions very differently, and even as a result relate to them differently, due to different nuances in meaning in emotion-related words, and other cultural associations (such as if a feeling usually has pejorative or serious connotations). If we start from the assumption that autistic folks, and neurodivergent people more broadly, are likely to experience the world atypically, and react to things very differently, it would stand to reason that the words we are taught to describe our feelings by society often won’t adequately line-up for many of us, with what we’re really feeling.

If how a cartoon or kids book character, for example, responds to a scenario doesn’t line up with our own, how can we learn what the right emotion words for conveying our own reactions should be? And that’s not to mention those around us also misidentifying our emotions and perhaps mis-naming them. These types of disconnect could quite reasonably leave a person confused, and without the same ease in finding the right words for their feelings, or the ability to accurately pinpoint them, that people might typically expect.

Some cartoons, such as Steven Universe, do actually do a great job of representing
a range of different ways of reacting to things and experiencing the world.
[Animated GIF: Steven Universe, a black-haired half-Gem white boy, hugging
Pearl, a crying humanoid Gem with ivory skin and light orange hair.]
These differences would also be exacerbated by how often people who react differently to things from the majority might be told their feelings are wrong: “you can’t really be so upset over that!”, “why would you be so excited/scared/etc?” Those who react more like the majority are unsurprisingly more likely to have their feelings and reactions accurately named and validated, than those who react atypically.

I think I drew this because I desperately needed
some coffee but it’s hard to be sure.

[image: Ink drawing of sad moose sitting in and
slumping over the rim of a disposable coffee cup.]
In fact, for many of us this is not even limited purely to emotions. Experiencing physical pain when others don’t think we should, such as due to sensory sensitivity, hypermobility issues or gut problems (all common for the autistic population), leads many of us to also have trouble with learning to fully trust or accurately interpret our interoception. Add to that a heavy dose of hyperfocus on a interesting topic, or spacing out completely from anxiety, and I certainly know from personal experience that it can be very hard sometimes to figure out if I seem angry because I’m hungry, ill, tired, sad about something… or actually angry.

The other thing about thinking about the causes or motivation behind problems in more depth, rather than stopping at the supposed ‘problem,’ is that it can help with figuring out solutions. I have noticed just in the last few years, as I’ve gotten to know more autistic people and learned more about myself, how much I’ve dramatically improved in my ability to identify and describe my emotions—and other bodily feelings. It really helps to have a community who don’t react to my descriptions by saying “that’s weird” or “surely you mean you’re [insert different emotion/reaction]”, and also to have read so many other first-person accounts from other autistic people that chime with my own. Having the language to communicate my feelings with others who can relate is amazingly powerful, and it feels like every new revelation helps me to figure something new out, and describe it better. It makes me think a lot about how important community can be, how much we can learn by having people we can relate to in our lives, and how valuable it is for us to have ever more accurate and authentic representations of different ways of seeing and experiencing the world.

I doodled this during the my first day at a new job. I’m not sure how
adequately it conveys my level of anxiety and excitement in that moment.

[image: Pencil sketch of a person with short wavy hair sitting at a table
with a cup of coffee and writing on a notepad, smiling and waving.]

This essay was originally published at Medium.

Friday, March 15, 2019

What the College Admissions Scandal Reveals About Privilege Inequality For Disabled Students

Three students at computer workstations, seen from behind
Photo © US Department of Education  | Creative Commons / Flickr
[image: Three students at computer workstations, seen from behind.]

Shannon Rosa
Senior Editor

Wealthy people using their privilege to bypass regular people problems like paying taxes is nothing new. But using that clout to exploit disability accommodations—to give their college-aspiring children truly unfair and also illegal advantages—is infuriating on multiple levels. As disability policy professional Rebecca Cokley noted at Teen Vogue:
"This behavior is harmful because when celebrities and others with privilege use a marginalized community’s civil rights as a 'VIP pass,' it frames reasonable accommodations as something 'special' that you should be able to buy, versus actual civil rights that give people with disabilities an equal seat at the table."
Adrienne Wichard-Edds reported on the scandal for the Washington Post, from the perspectives of several irate parents of students with disabilities:
"For children who really do struggle with learning and other disabilities, taking those high-pressure tests is challenging. Those accommodations, which can include extra time to complete the exam, are there to create fairness for students who encounter daily challenges in their education. Parents work overtime fighting to secure these accommodations, to try to level the playing field a bit. So finding out that people are abusing that system is a bitter pill for them to swallow."
…and I was one of the parents Wichard-Edds talked to:
“The thing that makes me the angriest about this is that my kids are already very hesitant to ask for accommodations because they don’t appear disabled,” says Shannon Rosa, senior editor of the website Thinking Person’s Guide to Autism and mom to three children ages 14, 18 and 20 — all of whom have disabilities. “There’s a stigma around receiving accommodations. Some people treat 504s and IEPs like they’re optional, but they’re the law. When you see wealthy parents gaming the system for things that people already have trouble accessing, it makes it even harder for those people who legitimately deserve and need them.”
I was grateful to be included, but the Washington Post article didn't include all of the points I discussed on the record, and wanted to emphasize. So I'm discussing them here:

One of the reasons my college-student eldest is hesitant to ask for accommodations isn’t just disability stigma, or anxiety about not being believed. It’s because she’s an intensely ethical person who knows that there are other students who need accommodations, but don’t get them because they're undiagnosed. And the reason they are undiagnosed often has to do with the privilege gap underlying this entire mess.

My family lives in a town that is adjacent to two of the wealthiest towns in the country, but our city has a high proportion of low socioeconomic status families and English learners. If parents can't afford to take time off of work to attend IEP or 504 meetings, and/or don't speak English as a first language or at all, that makes accessing disability diagnoses and supports difficult. In addition, parents who can't hire professionals to help them navigate the often impenetrable disability supports and disability education systems aren't even aware of the rights their kids are legally entitled to.

So it’s not only that kids with disabilities get penalized for seeking accommodations they need and deserve—and that those wealthy parents exploited for their own, non-disabled kids’ advantages. It’s that many families don’t even have the ability to get their kids legal access to IEPs/504s. And that's just wrong, in all the ways.

Tuesday, March 12, 2019

Inspiration Porn: How the Media and Society Objectify Disabled People

Florida State football player Travis Rudolph, a Black man with  short natural hair, eating pizza in a school cafeteria at a table with a  white boy with very short red hair and glasses, who is seen from behind.
Photo via Time
[image: Florida State football player Travis Rudolph, a Black man with
short natural hair, eating pizza in a school cafeteria at a table with a
 white boy with very short red hair and glasses, who is seen from behind.]
Kit Mead
kpagination.wordpress.com

A while back, an example of inspiration porn crossed my Twitter feed: a Florida State University college football player sat down and had lunch with an autistic boy in a cafeteria. The story got picked up by the New York Times.

I don’t fault the college football player very much, if it all (but I hope he asked the autistic student if the company would be welcome). The football player probably just saw a person likely excluded by classmates. He wanted to make sure the student was not alone. At worst, there is the element of pity involved, but the act itself was not ill-intended.

I do fault the Internet and the news media. We, disabled people, see these types of things spread like wildfire, time and time again:
Two examples are the way the Internet took hold of an autistic store employee decorating a cake, and an employee at a Kentucky Qdoba helping a physically disabled woman eat when she asked for assistance. In the age of easy access to recording devices and uploads to YouTube, Facebook, and other social media platforms, these stories attain a viral ferocity. Journalists pick up on the fact that the video or story is trending across social media. News articles about the story crop up, fueling its spread even further.

We Could Be Next: The Risk of Being Filmed


The effects of these viral stories are quite damaging, even when one does not go to the most extreme consequences. Any one of us could be the next story by asking for help, or getting help even if we don’t want it. Since the conductor announcements of what train is approaching are hard to hear, a  blind person asks a subway stationmaster to help them get on the right train. An autistic person has a shutdown. Their friend helps them retreat to a quiet location without fanfare at the scene. A wheelchair user faces a curb without a cut, and they decide to complain to the city after finding another route. But a stranger rushes over anyway and helps get them over the curb. Someone could film any one of these situations and unleash the tidal wave of feel-good comments, shares, and news stories.

We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.

Inspiration Porn Hides Key Issues


Inspiration porn also hides key social and policy issues. In “Inspiration Porn Further Disables the Disabled,” David Perry writes of these kinds of stories, “[the stories] all feature people doing good things. There’s nothing necessarily wrong with the content of these stories, of course, but the way they’re told conceals the real issues faced by the disability community… Inspiration porn makes us feel that everything is going to be OK.” Perry also wonders: Why isn’t the state of Kentucky providing community-based supports to the wheelchair user at Qdoba, so she doesn’t have to rely on strangers to help?

In the case of that autistic boy eating alone at school, why has the school failed to model social inclusion? What about the scenario of the blind person asking for help getting on the correct train – why aren’t conductor announcements for arriving trains distinct and clear? And for the wheelchair user facing the curb—why wasn't there a curb cut to begin with?

The Destruction of Privacy


They also destroy our right to privacy. As one writer in the Chavisory blog post Deprivation of privacy and other thoughts points out, “persistently violating someone’s privacy over time also just establishes a standard (to both that person and everyone around them) that it’s acceptable to persistently violate their privacy over time.” Even if we haven’t had our privacy eroded over time, often journalists publish our names, even if the original poster of the video or story did not. Everyone now knows us as “the person in that inspirational video,” and the person helping as our hero. The instantaneous destruction of privacy tells society that it is acceptable to sacrifice our privacy to make a feel-good news story, and to do it to any disabled person…over and over again.

How It’s Toxic for Us


Finally, we notice when we get objectified as inspiration porn. We feel objectified. It is toxic. Being objectified hurts our self-image and mental health. It erodes our ability to feel safe and like we can have even some privacy. It hampers our ability to set boundaries around privacy. It makes us feel like we have no control over our life and story. We notice, and it hurts in more ways than one.

Conclusion: The Vicious Cycle


And of course, the way these viral stories get reported and commented on further a vicious cycle, encompassed in the following:
  1. We (disabled people) get seen as other: less than human, or a lower level of human.
  2. Because we are other, acts of kindness toward us seem newsworthy. We are not real people, after all. We are other. Kindness toward unpeople is as newsworthy as large-scale natural disasters and transportation accidents.
  3. The writers of these news stories objectify us. We are pity objects and have no agency. We exist to make people feel good about their deeds. We reach the bare minimum of humanity, if we are human at all. They make us seem other by teaching people that it’s a miracle anyone is nice to us at all.
  4. We get seen as other. Kindness toward us is newsworthy. We get objectified. People learn that being nice to us is miraculous. We get seen as other
But we are here and human. We can tell our own stories, if anyone bothers to ask. If no one asks, we tell them anyway. We can be our own advocates, and we can also be activists and writers and professionals. The Developmental Disabilities Act says “disability is a natural part of human experience,” and this is true. It is past time that non-disabled people get accustomed to seeing disabled people in their midst as normal, rather than as a news story.

Monday, March 11, 2019

Inter-Views: A Typing-Only Podcast Listening Party

Adam Wolfond
[image: A young teenage boy with brilliant brown hair
sitting on the beach.]

Adam Wolfond
soundcloud.com/awolfond

I have a podcast called Inter-Views. My first podcast was an interview with artist Ellen Bleiwas. Ellen collaborates with me in thinking about art and movement at The A Collective in Toronto, Canada. She is a kind and wonderful artist. The Inter-Views podcasts are not about me but about sharing views. I like that I am not asked questions about autism. People should learn with others. I am hoping my podcasts will reach people. In the interviews I manage to type to communicate and my guests mostly talk.

I had an Inter-Views listening party recently because I wanted lots of people to hear what we do and I wanted open minds about how people like me type to really talk. The interesting part of the interviews is the way insides of thinking are yards apart: We are managing to talk with the typing and talking together. The yards are the easy distance—always at the same and easy place—but we all have different ways of inside thinking. The inside thinking is the way of answering, mastering deep thinking which is like the way of feeling. Answering by the way of the typing is different. That is the way I am thinking when I have to answer questions. The way of feeling-and-thinking does not easily answer questions.

Thinking happens at a slower pace with typing. The idea about the typing-only listening party was to have not-speaking questions but answering with the amazing pace of inside thinking. I am mad about the fact that I can’t speak but amazing thing about the listening party was that I was like others when they had to type.

The way I feel about not being able to start conversations is always hard for me and I like when others have to work at typing, having to wait for management of bothersome social talking. The pace of talking is really fast and people seem to want to move from one topic to the next and when I type I am slowed. The slowness of typing is mostly frustrating but when people listen slowly they are thinking more and not having to worry about what to do in social situations. Always being patient when I am typing is good and makes interviews interesting. I was thinking that the management of the want of talking at the party was the funniest thing because everyone was awkward but I was pleased that want to type was in the room.

I want to say that I am wanting people to be patient when I type because I am working really hard at doing what you do and I want an easy way of always having a relaxing time with everyone. When people have to type they learn that it takes time to get out the words and I am amazed when people take the time to do it with me, answering each other like watering the plants of talking without speaking. I think the amazing sign language Deaf people use is something everyone else should try so that they appreciate many ways of communication. I would have a hard time signing because I don't have good movement for that but I can type and that’s something a lot of people can do, and if they can’t read well they can use language of pictures. Open classes of communication need more inspiring options to express thinking.

I think the listening party was successful because everyone was in the spirit of answering the call to different way of communication. If everyone had to type the world would think about things each word at a time. The way of communication amazes me because I am wanting to talk having you and me in always equal easy feeling. I think more people should try typing-only parties and classes. My teacher at school liked the idea of typing so now the class types conversations in the morning and I am in easy equal feeling. The communication of typing thinks about real feelings and not just social words.

----

Adam Wolfond is a sixteen year-old  non-speaking high school student, artist and poet, and the co-founder of The A Collective in Toronto which is a learning/artistic community on neurodiversity and creation. You can hear his podcasts at soundcloud.com/awolfond.

Meltdowns: How Autistic Humans Experience Crises

Sonny Hallett 
medium.com/@sonyahallett

This post is about what meltdowns feel like to me, what impacts they’ve had, and what I’m learning about them. Other autistic people may have very different experiences, but if you are autistic yourself, I hope you will find something relatable about my descriptions and illustrations, or something helpful or encouraging in the things I’m learning. If you’re not autistic, I hope this gives you some insight into some aspects of a different way of being, different ways that humans can experience crises, and how your reactions could help or hinder.

----

I’ve been thinking about autistic meltdowns lately, and how little they’re understood. Too much of what society hears about meltdowns, and what gets written, is about autistic kids, their experiences related by parents and professionals. Of course, many autistic people have also talked about their meltdown experiences very eloquently, but as with so many aspects of being autistic, our lived experiences are still very underrepresented in dominant narratives.

I was diagnosed autistic as an adult, at 28. I had always experienced meltdowns and have vivid memories of them happening throughout my childhood, teens and 20s, but I never understood them, and neither did anyone around me. As I got older, these ‘outbursts’ became less and less acceptable and more alarming to others, so I learnt to hide them as much as possible—which was not always.

Now that I understand my meltdowns and their triggers better, I have observed the buildups to usually take two distinct forms: gradual or sudden.

[Click images to enlarge]

Image description: a five panel black-and white cartoon. Panel 1: Sketch of a white large feather on a black background. The tip of the feather is pointing at the lower left corner on a diagonal.  The caption at the top of the panel reads, in white, “Sometimes it builds up over time…” Panel 2: The same feather, its tip pointing at the top right corner, also on a diagonal. The caption continues, “a gradual increase in nervous ENERGY” Panel 3: Sketch of a black door marked “Pull” with a white frame. A person is reaching towards the door handle with their left hand. They are wearing a coat and fingerless gloves. Only their arm is visible.  The caption  continues, “Like STATIC in cold dry weather, a gradual shift from an irritating tickle to pinpricks of electricity”  Panel 4: the same person pulling their hand away from the door. Their hand is surrounded by small white lightning bolts, and a large white lighting bolt is drawn on the top of the page.  The caption continues, “To full-on JOLTING SPARKS” Panel 5: Sketch of bird flying in a cloudy sky at the top of the panel. The rest of the panel is sketched perpendicular to the sky.he panel is the same size as all the previous panels put together. There is a drawing of a loop of road on the far left side of the panel. There is a tangle of arrows and road signs on the right side of the drawing.  The caption finishes, “Sometimes it comes out of the blue… Perhaps from a SUDDEN CHANGE of plan, leaving everything confused and out of control.” In full, the caption reads: “Sometimes it builds up over time… a gradual increase in nervous ENERGY like STATIC in cold dry weather, a gradual shift from an irritating tickle to prinpricks of electricity to full on JOLTING SPARKS[.] Sometimes it comes out of the blue… Perhaps from a SUDDEN CHANGE of plan, leaving everything confused and out of control.”
[Image description: a five panel black-and white cartoon.
Panel 1: Sketch of a white large feather on a black background. The tip of the
feather is pointing at the lower left corner on a diagonal. 
The caption at
the top of the panel reads, in white, “Sometimes it builds up over time…”


Panel 2: The same feather, its tip pointing at the top right corner,  also
on a diagonal. The caption continues, “a gradual increase in nervous ENERGY”


Panel 3: Sketch of a black door marked “Pull” with a white frame. A person
is reaching towards the door handle with their left hand. They are wearing a
coat and fingerless gloves. Only their arm is visible. 
The caption  continues,
“Like STATIC in cold dry weather, a gradual shift from an irritating
tickle to pinpricks of electricity”


Panel 4: the same person pulling their hand away from the door. Their hand
 is surrounded by small white lightning bolts, and a large white lighting
bolt is drawn on the top of the page. 
The caption continues,
“To full-on JOLTING SPARKS”


Panel 5: Sketch of bird flying in a cloudy sky at the top of the panel.
The rest of the panel is sketched perpendicular to the sky. The panel
is the same size as all the previous panels put together. There is a
drawing of a loop of road on the far left side of the panel. There is
a tangle of arrows and road signs on the right side of the drawing. 

The caption finishes, “Sometimes it comes out of the blue…
Perhaps from a SUDDEN CHANGE of plan, leaving everything
confused and out of control.”


In full, the caption reads: “Sometimes it builds up over time…
a gradual increase in nervous ENERGY like STATIC in cold dry
weather, a gradual shift from an irritating tickle to prinpricks of
electricity to full on JOLTING SPARKS[.] Sometimes it comes
out of the blue… Perhaps from a SUDDEN CHANGE of plan,
leaving everything confused and out of control.”]

Whatever the type of buildup, I think it is always a reaction to depleting cognitive load, or in other words, too much stuff taking up my brain’s processing capacity, until it’s overwhelmed. In the case of a sudden change, the unexpected thing, which might be fairly trivial, hits me like a tsunami. All my resources are taken up trying to readjust to the new situation — whether it’s making new plans, figuring out how I feel about it, how to react, etc. This doesn’t actually mean that I’m necessarily bad in a crisis. In fact, many of the crises that happen have clear procedures to follow, or they might be things I’ve made contingency plans for. It’s the things I haven’t had a chance to script for or plan out internally that can throw me.

The gradual buildup kind can bring lots of different factors into play. Everything that happens in a day, from needing to eat, dress myself, and walk the dog; to projects for work, social demands, other uncertainties or worries, and illness or pain… all of these take up some of my diminishing resources. It can therefore take a fairly trivial thing to bring them all crashing down.


Image description: drawing of a person looking towards the top right of the window. They are wearing a fuzzy sweater and black pants and shoes, and is perched with one shoe on a rectangle blocks labels “WORK THING.” They are juggling two balls, one labeled “FOOD” and one labeled “WASH,” in his left hand. They are balancing a diamond block labeled “PAIN” on their left shoulder. On  their right side, they are balancing a pile of differently shaped blocks on their thigh and holding them in place with their right hand. The blocks are labeled in all caps, from top to bottom:      •Bad Noise      •Demands     •Look “Normal”     •Worries     •Social Things     •Uncertainties      •Very Uninteresting Things A crane is depositing a square block labeled “NEW THING” on the top of the pile. Finally, the person is also holding a basket full of snakes in the crook of their left arm. The image is captioned “COGNITIVE LOAD.”
[image description: drawing of a person looking towards the top right of the window. They are wearing a fuzzy sweater and black pants and shoes, and is perched with one shoe on a rectangle blocks labels “WORK THING.” They are juggling two balls, one labeled “FOOD” and one labeled “WASH,” in his left hand. They are balancing a diamond block labeled “PAIN” on their left shoulder. On  their right side, they are balancing a pile of differently shaped blocks on their thigh and holding them in place with their right hand. The blocks are labeled in all caps, from top to bottom: 
    •Bad Noise 
    Demands
    Look “Normal”
    Worries
    Social Things
    Uncertainties  
    Very Uninteresting Things
A crane is depositing a square block labeled “NEW THING” on the top of the pile. Finally, the person is also holding a basket full of snakes in the crook of their left arm. The image is captioned “COGNITIVE LOAD.”]
These days, I know that I’m running dangerously low on resources when I start finding everything much harder to do and filled with anxiety, including normally very simple tasks like remembering to eat or choosing what to wear in the morning. I also feel it physically: a gradual buildup background hum, like being under high-voltage pylons. The growing buzz also makes me much more sensorily sensitive: noises I’d normally tolerate become increasingly painful, textures freak me out all over the place, my whole body tenses up.

Image description: a drawing of a white transmission tower on a black background.
[Image description: a drawing of a white transmission tower on a black background.]

On days like these, I wake up feeling like my bones have been vibrating in my body all night. The energy makes me want to move about and fidget and shout to shake it out, but also fills me with a deep and draining exhaustion.

[Image description: sketch of a body sitting in bed with its skeleton visible. The body is
sitting with its back to a pile of pillows and its legs tucked are under a blanket.
The skeleton is holding its hands in front of its face. The words “plink,” “click,”
 “shake,” “plink,” and “rattle” are written clockwise around the outside of the body.]

In those moments, every additional demand exacerbates and prolongs the pressure. Sensory stuff, decisions I need to make, other people to worry about, or being in public and needing to hide. I might still be able to put off some of the ‘explosion’, but at the expense of things being much more explosive later. The buildup of energy feels like unbearable pressure in my whole body. I need to move or yell or cry. I need to hit things, I need to feel physical pressure or pain so that I can be sure my body isn’t fragmenting.

separated by a long diamond.  In the first section is a drawing of a white palm. The section is captioned “My edges feel fuzzy, like I’m drifting apart.”  The second panel has a drawing of the same hand in a first. It is captioned, “Perhaps that’s partly why…” The third panel contains a drawing of a fist slamming into the bottom of the square, cracking the surface below it. Above the first is  a large, a jagged semi-circle, showing that the fist was slammed down with great force.  The caption finishes, “…I feel like I need to SLAM them back into place.  In full, the caption reads, “My edges feel fuzzy, like I’m rifting apart. Perhaps that’s partly why… …I feel like I need to SLAM them back into place.”]
[Image description: a black square divided into 3 sections split diagonally:
right triangles at the top and and the bottom, separated by a long diamond.

In the first section is a drawing of a white palm. The section is captioned
“My edges feel fuzzy, like I’m drifting apart.” 

The second panel has a drawing of the same hand in a first. It is captioned,
“Perhaps that’s partly why…”

The third panel contains a drawing of a fist slamming into the bottom
 of the square, cracking the surface below it. Above the fist is a large,
jagged semi-circle, showing that the fist was slammed down with great force. 

The caption finishes, “…I feel like I need to SLAM them back into place. 
In full, the caption reads, “My edges feel fuzzy, like I’m rifting apart.
Perhaps that’s partly why… …I feel like I need to SLAM them back into place.”]

Amidst all this, I have a pretty clear inner voice narrating and observing everything that’s happening, but very diminished in its ability to be in control or make decisions. I can just about make some small judgments about what not to flail at, for example (other people, pets, breakable things), but making more complicated decisions, responding to questions, or even talking can feel overwhelmingly difficult. Trying to chase down my thoughts or words can feel like trying to grab fish in a pond with my bare hands. I need time and quiet to calm down before I can think properly, and every new demand is just prolonging how long that will take.

Image description: a series of 3 sketches.  Sketch 1: three small fish swimming counterclockwise in a circle. The fish are labeled “WORDS,” “DECISIONS,” and “ANSWERS.” Sketch 2: two white hands reaching into a pool of water.  Sketch 3: a spiral of white scribbles on a black background.
[Image description: a series of 3 sketches. 
Sketch 1: three small fish swimming counterclockwise in a circle.
The fish are labeled “WORDS,” “DECISIONS,” and “ANSWERS.”

Sketch 2: two white hands reaching into a pool of water. 
Sketch 3: a spiral of white scribbles on a black background.]

As an pre-diagnosis adult, my meltdowns were one of the most obvious ‘different’ things about me that I was scared of, and didn’t understand. The feeling of overwhelm can be such that I felt like I would do almost anything to make it stop, even if it meant self-injury or breaking things around me. I also worried that I might hurt other people, and the fear and worry my meltdowns elicited in people when they did see them (and they were often people I felt safe around) made me worry that I was dangerous, or bad, or seriously broken in some way.

The fact is that while my actions are normal for an autistic person, most non-autistic people don’t know how to react, and may find it alien and alarming due to a lack of understanding. I often think about how people familiar with panic attacks know that they are not an emergency, that they feel worse than they really are, and learn not to panic.

Over the years, I’ve encountered a number of people's reactions to me while I'm in meltdown or near-meltdown: from fear that I was going to be violent or concern that I was having some kind of mental breakdown, to worry that I lacked capacity for making decisions (one ex used to say that those times, and times when I expressed intense joy, made him worry that I didn’t have the ‘mental capacity’ to consent to being in a relationship as an adult). I’ve been told that I am overreacting and need to stop crying, when it’s not in my control, I’ve known people to get angry and tell me I’m ‘acting out’ for attention, and I’ve seen people panic and edge away from me, making me feel like I am some kind of wild animal that they think needs to be contained.

Image description: a person with a frightened expression inside  an angry bear. The bear is snarling at two people in the right  bottom corner. The person on the right is also terrified.
[Image description: a person with a frightened expression inside
an angry bear. The bear is snarling at two people in the right
bottom corner. The person on the right is also terrified.]

I remember a particularly turbulent time in my teens, going to a Samaritans drop-in, desperate for help with the feelings building up inside me. The well-intentioned volunteer didn’t understand what was happening with me, and my frustration and fear at not being able to communicate, plus her suddenly grabbing my hands in an attempt to comfort me, tipped me over into a full-on meltdown. I remember hiding behind the chair trying to get as far away from her as possible, and hitting the chair, the floor, myself. I remember seeing her back away in alarm and panic, call two more people into the room, who quickly escorted me out of the building.

Another time, I was in a French lesson at school. It was a hot summer day, the windows were painted shut, the teacher was behind on the exam syllabus, and was making up for it by simultaneously playing us ‘accelerated learning’ tapes, making us finish written work, and sorting out individual paperwork by calling students up to the front. The heat and noise and fractured focus closed in on me more and more. I remember the walls spinning and my breath getting short and panicky. Nothing was making sense and all my senses hurt. I was trying to focus, but my thoughts felt like they were only slowing down, and I couldn’t filter anything out: the unpleasant texture of my school uniform, the tinny tape speakers, another student dropping a pencil…

Image description: two people sitting back to back. The person on the right has their knees up to their chest and their arms wrapped around themselves. They have an anguished expression on their face. The person to the left is the same shape and size, but is filled with white snakes and hyenas with red eyes screaming at and fighting with each other.
[Image description: two people sitting back to back. The person on the right
has their knees up to their chest and their arms wrapped around themselves.
They have an anguished expression on their face. The person to the left
is the same shape and size, but is filled with white snakes and
hyenas with red eyes screaming at and fighting with each other.]

I felt like a huge force was overwhelming me and I couldn’t stop it: suddenly I got up from my seat, violently, ripped up the paper in front of me in handfuls, and screamed, “THIS IS MAD WE CAN’T WORK LIKE THIS.” I don’t remember anything after that, possibly, except stunned silence and me sobbing. The next day my form tutor said, “I heard you had a funny turn in your French lesson.” I couldn’t explain it, and it wasn’t brought up again asides from by other kids, some of whom would yell, “THIS IS MAD WE CAN’T WORK LIKE THIS!” at me for the rest of my time at that school. I’m still not sure if it was all teasing to be honest, as I think no one else in that class was having a good time that day either.

Some years later, at university, a good friend who used to regularly pop round to my room in the dorms came by after I messaged her saying I was having a tough time. I was under the desk, squeezed in as tightly as I could. I don’t remember what else I was doing but I do remember the expression on her face, and her quickly leaving. We weren’t so close after that.

Image description: a loop of overlapping white ferrets with red eyes surrounded by a larger loop of snakes, their bodies wound together. The snakes and ferrets are snarling at each other.
[Image description: a loop of overlapping white ferrets with red eyes
surrounded by a larger loop of snakes, their bodies wound together.
The snakes and ferrets are snarling at each other.]

Learning that I am autistic, and understanding more about what that means for me, made me realise that meltdowns are a normal part of autistic experience. I’m not dangerous, it’s not a sign of some kind of terrible mental deterioration or break from reality — it’s just a response to stress and overwhelm. Don’t get me wrong, meltdowns are still deeply unpleasant, but there is less fear of the unknown attached to them, about what could possibly be happening. I can start to work on learning what my triggers are, when they might be imminent, how to prevent things from escalating, and what I need in those situations.

The fact that I can start to figure these things out for myself, with the help of the brilliant autistic community, as well as great allies and mentors, now means that I am also starting to learn to communicate what I need more clearly to others. 

Taken in isolation, meltdowns are unpleasant, exhausting, frustrating, sometimes even frightening, but they are also self-limiting. Knowing this, and why they happen, means that to me they really aren’t so much of a big deal in the grand scheme of things any more — I’m going to have them now and then, but that’s ok. The things I still worry about relating to meltdowns are almost all to do with the long-term repercussions of what might happen if I have a meltdown, or start getting close to one, around other people.

It seems like a pretty difficult responsibility that society places on us, as autistic people, to often have to do a lot of clear and coherent educating for our own safety, and to reassure others, just when we’re feeling at our least clear and coherent, and are in most need of reassurance ourselves. There are far too many examples of autistic people being arrested or sectioned, let alone reprimanded or ostracised, for having a reaction to difficulty and stress that is normal to our way of being, but not nearly well enough understood by others.

Following a meltdown that others have witnessed, I’m usually stuck endlessly replaying their reactions, worrying about what they might think, whether they are angry or scared or think less of me, dealing with any consequences that may have come from it. But more and more people are also starting to understand. There are several people in my life now, autistic and non-autistic, who I feel safe to be stressed around, even if I feel like a meltdown might be imminent. Times when I haven’t been ok around these people, they have offered the calm and reassurance I needed, and not thought differently of me, and as a result I’ve not been left trapped so much in loops of guilt or worry. Those meltdowns don’t linger as memories of significantly horrible events the way the ones I described earlier do.

Meltdowns are just one piece of autistic experience — an unpleasant and sometimes very difficult one, sure, but the hypersensitivity to sound and touch I feel when stressed is also the hypersensitivity that allows me to get so much joy out of the world when I’m excited. The energy and buzz that can make me writhe and flail in frustration is similar in feeling, in some ways, to the positive energy and drive I get when I’m really getting into a project, or about to do some enthusiastic public speaking. The electricity and anxiety that is part of the experience of being me (and autistic) is powerful, and can be scary, but is also what adds so much richness and focus to my world. I’m excited by how much we can all learn about different ways of being and experiencing, how to support each other, and what this diversity can add to the things that we all do.

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A version of this essay was previously published at https://medium.com/@sonyahallett.

Images © Sonny Hallett.

Image descriptions by Sara Liss.


Friday, March 8, 2019

The quest for autism’s causes, and what it reveals about all of us

Emily Willingham
As alarm grew over autism prevalence at the turn of this century, there was much public talk of a growing “epidemic.” That language has since softened, and it is now clear that many autistic people were there all along, their condition unrecognized until relatively recently.

But what is the cause? The emerging narrative today is that there is no single cause—rather, multiple factors, roughly sorted into the categories of genetics and environment, work together in complex ways. Because of this complexity and the hundreds of gene variants that have been implicated, developing human brains may follow many possible paths to arrive at a place on the autism spectrum.

And this may help explain something true about autism: It varies greatly from one person to the next.

As clinicians view it, autism involves communication deficits and formulaic, repetitive behaviors that present obstacles to establishing conventional relationships. The soft borders of that definition—where does communication difficulty cross over into communication deficit?—suggest blurred margins between people who are diagnosed with autism and those who approach, but never quite cross, the line into diagnostic territory.

Those who do have diagnoses display behaviors on a continuum of intensity. Their use of spoken language ranges from not speaking at all to being hyperverbal. They can have a unique interest in the finer details of window blinds or an intense but more socially tolerated fascination with dinosaurs. As with many human behaviors, each feature exists on a spectrum, and these spectra blend in a person to create what clinicians call autism.

By pinpointing risk-associated genes and uncovering their roles, studying the roots of autism also is providing new insights into the development of all human brains, autistic or not. Here is a taste of what we now know, and what we don’t, about autism’s causes—and what that search is teaching us about everybody’s neurology.

They know it when they see it

Despite the many and varied threads that may interweave to cause autism, the condition is largely identifiable. What clinicians are really saying when they diagnose autism, says James McPartland, a clinical psychologist at the Yale Child Study Center, is that they see a recognizable, if broadly defined, constellation of behaviors. “So really, there is something true about autism, and everyone who meets the diagnosis of autism shows these kinds of behaviors.”

US rates of autism diagnoses have increased over the years, as shown in a graph. Numbers are averages of prevalence among 8-year-old children from several reporting sites of the CDC's Autism and Developmental Disabilities Monitoring Network. Not all sites reported in each year shown, and the ranges can be broad (for example, in 2000 the average was 6.7 per 1,000 children, but the range from different reporting sites was 4.5 to 9.9).  At least part of the increase is due to heightened awareness and shifting diagnostic criteria.
[image: Bar chart showing the rise in autism diagnoses from 2000 to 2014,  based on Centers for Disease Control (CDC) data.]
At the same time, the subtle differences in how each autistic person manifests the telltale features make it highly individual, says Pauline Chaste, a child psychiatrist at Inserm U 894, the Centre de Psychiatrie et Neurosciences, in Paris. “We describe a specific behavior that exists — that kind of social impairment and rigidity. You can have more or less of it, but it definitely exists.”

The more or less of autism could trace, in part, to the types of gene variants that contribute to it in a given person. Some of these variants have a big effect by themselves, while others make tiny contributions, and any autistic person could have their own unique mix of both. One thing seems clear: Though there may be something true about autism, as McPartland puts it, the existence of “one true autism gene” or even one gene for each autism feature is unlikely.

Instead, there will be patterns of gene combinations and the results they produce, says epidemiologist Elise Robinson of the Harvard T.H. Chan School of Public Health and an associate member of the Broad Institute. People who have both autism and intellectual disability, for example, tend to have more big-effect gene mutations than people with autism alone.

Facial communication

Looking for these contributing gene variants isn’t simply an exercise in scientific curiosity or in finding potential targets for drug treatments. Because most of these genes direct how human brains develop and nerve cells communicate, learning about how they lead to autism can also reveal a lot about how everyone’s brain works.

For example, a key autism trait is atypical social behaviors, such as, sometimes, not focusing on “social” facial features like the eyes. Although the tendency to look into another person’s eyes seems like something we might learn simply from being around other people, autism research has revealed that genes underlie the instinct.

In a 2017 study, the authors first showed that identical twins are similar in how they look at a video with social content, such as faces. When viewing the same video, the identical twin pairs shifted their eyes with the same timing and focused on the same things far more than did two non-identical siblings or unrelated children. The fact that almost all twin pairs shared this tendency suggests solid genetic underpinnings for the behavior.

Having established a strong genetic contribution to this trait, the investigators, from Emory University and the Marcus Autism Center in Georgia and Washington University in St. Louis, then showed that the tendency to look at the eye and mouth areas of a human face is decreased in autistic children. They concluded that while not all of the inclination to look at certain parts of a face is genetic, much of it is.

Twin studies like this are powerful tools for evaluating how much genes dictate a feature, and such investigations reveal that the genetic contribution to autism is substantial. Autism also tends to cluster in non-twin family members: One in five infants who has an older sibling with autism also develops it.

Genetic determinants

Overall, genetics accounts for about 70 to 80 percent of factors contributing to autism, says neurologist Daniel Geschwind, director of UCLA’s autism research and treatment center. By comparison, a condition like depression has an underlying genetic contribution of about 50 percent, he says. Alessandro Gozzi, neuroscientist and group leader at the Istituto Italiano di Tecnologia, weights the power of genes even more, placing the shared diagnosis rate between twins as high as 95 percent, depending on how strict the diagnostic boundaries are. But regardless of the precise value, he says that the “wide consensus” among autism researchers is that genetics is a powerful determinant of autism.

Going the next step — finding the specific genes involved—is a monumental task. It’s also one that yields dividends for understanding brain function more broadly.

The candidate gene variants are today very numerous, but a few stand out for their potential to exert a large effect. Chaste cites fragile X syndrome and Rett syndrome as examples—both are genetic conditions (termed syndromes because they are defined by a cluster of traits) that are tied to variants of a single gene or chromosome region and are closely associated with autism.

The gene linked to fragile X syndrome lies on the X chromosome. Its name, FMR1, is easily forgettable, but the effects of its variants are not. Studies on the causes of fragile X reveal that the protein this gene encodes, FMRP, acts as a cellular shuttle for RNA molecules that are crucial for nerve-cell communication and plasticity of connections in the brain. In people with fragile X, cells don’t produce the protein, or make very little of it. The FMR1 variants underlying fragile X are the most common known genetic cause of intellectual disability and are implicated in 1 to 6 percent of autism cases.

Like FMR1, the genetic changes involved in Rett syndrome also affect brain development. A gene called methyl CpG binding protein 2, or MECP2, oversees the activity of many brain-related genes, turning them off or on. Because of this pivotal role for MECP2, mutations that affect its function can lead to broad effects. Some of the resulting features look so much like autism that Rett syndrome was categorized as an autism spectrum disorder until 2013.

Other genetic syndromes also include autism as a feature. Some are caused by variants in a gene called SHANK3 which, like most genes implicated in autism, is involved in brain development and function. The protein that it encodes helps to coax nerve extensions to form and take shape so that a nerve cell can communicate with others. The SHANK3 protein also provides a physical scaffold for those cells to link up. In populations of people with mutations that prevent SHANK3 protein production or who are missing the segment of chromosome 22 that contains the gene, most will have autism or Phelan-McDermid syndrome, which often includes autism.

Yet another syndrome arises from the loss or duplication of a chunk of chromosome 16. Researchers linked this chromosomal change to autism in studies comparing the DNA of people with and without the condition, singling out sequence alterations found only in autistic participants.

Despite their clear ties to autism, these syndromes are rare. “Collectively, they are found in about 5 percent of the total population of patients with autism,” Gozzi says. That leaves a great deal to explain.

Inheritance on a spectrum

So where do the other autistic people come from, genetically speaking? Robinson says that their genetics don’t neatly fall into two types of buckets, of either a few genes with big effects or many genes with small effects. “It’s been well established at this point that it’s not either–or,” she says.

In fact, says Gozzi, varying combinations of big-effect mutations and lots of different, smaller-effect ones could explain the wide spectrum of differences observed among autistic people. The evidence supports such a range, he says: everything from a few heavy-hitting variations in some people, to an additive dose from many variants in others, and with overlap between the two patterns in still others.

Graphic illustrating how four different genes affect neurons
Scientists have identified many genetic variants that are linked to a raised risk of autism. Often, these variants affect the function of genes involved in the development and activity of brain cells. Here are four such genes, each of which carries instructions for a protein (called MECP2, PTEN, FMRP and SHANK3) that has an important function in neurons. Studies like this, of autism’s genetic causes, are teaching scientists more about brain biology.
[image: Graphic illustrating how four different genes affect neurons.]
Geschwind adds yet another layer of complexity: the role of the cellular environment that all the other gene variants in a person create, known as the background effect. For example, someone could have a mutation conferring high risk that is either enhanced or diminished by the background input from other genes not directly related to autism, to create a gradation of autism intensity.

Environmental influences

When researchers speak of environmental inputs to traits, diseases and disorders, they are referring to everything from pollutants in the air to subtle perturbations inside cells to cues from other cells. Finding such causative candidates for autism generally involves epidemiological studies that look for correlations between autism rates in a population and an environmental factor of interest.

These connections aren’t easy to locate. In the case of genes, if a study involves enough people, even rare genetic differences that make small contributions to autism can often be plucked from the pile. Not so for environmental influences if their effects are significant but small, says Robinson. Within those epidemiological studies, you have to be able to detect that slight signal and assess its power against the larger, background noise of lots of other variations in the cell, body or outside environment that you might not even be aware of and might not be relevant. “We don’t live in a simple, single-exposure world,” says Kristen Lyall, an epidemiologist at Drexel University in Philadelphia.

And even when a connection is made, its basis is still just math. That is certainly the first step in evaluating a link between an environmental factor and a condition such as autism: As one thing goes up, does the other follow? But two things that track together don’t necessarily share a biological association. (One of the silliest examples to illustrate how misleading correlation can be is how tightly the number of people killed by venomous spiders each year tracks with the number of letters in the winning word of the same year’s Scripps National Spelling Bee.)

In the case of genetic studies, gene changes with tiny effects can still be considered plausible if their usual role relates to brain function in some way. Environmental factors aren’t as well catalogued, measured and tracked. But the better epidemiological studies do look for correlations with credible and pre-identified factors of interest (so, not Scripps Spelling Bee words).

For feasibility’s sake, work on environmental factors in autism has tended to focus on inputs that have broad effects on brain development. Robinson points to extreme preterm birth, which is related to many kinds of neurodevelopmental disorders—autism among them.

Eventually, studies can add up to connect dots and arrive at a plausible story of cause and effect. For example, along with preterm birth, air pollution also has been linked to autism risk. Another recent study found that when oil and power plants close down, preterm births in the region drop. It’s therefore a reasonable hypothesis that very preterm birth operates as an intermediate between air pollution exposure and autism.

Lyall believes that prenatal exposures to environmental pollutants that can behave like hormones are particularly strong candidates for involvement in autism risk. These chemicals, collectively known as endocrine-disrupting compounds, include pesticides and even heavy metals, and they are pretty much everywhere—in air, land, water, food and us.

Some research suggests, for example, that exposure to the endocrine disruptor mercury in air pollution raises autism odds. The studies are few and the data haven’t overwhelmingly showed increases in risk, Lyall acknowledges, “but I think that it’s an interesting and important area for future research given the lack of regulation around these chemicals, their ubiquity in the environment and their known adverse effects on broader neurodevelopment.”

Researchers have also homed in on plausible biological bases for a couple of other potential environmental effects. Gozzi points to animal studies, mostly in mice, that bolster human work linking autism in a child with prenatal exposure to a mother’s ramped-up immune responses as a result of infections. Again, Gozzi stresses that the findings are far from definitive, and most studies involving humans have focused on infections severe enough to require hospitalization.

Another unearthed link is to paternal age at conception: Studies find that autism risk increases with the age of the father, usually starting in the thirties or forties, although the age range and magnitude of the increase vary among different studies. The cells that give rise to sperm tend to accumulate new mutations over the years, so the sperm contain sequence changes that pass to offspring but aren’t present in the father’s own body cells. Some of these changes involve regions or genes already implicated in autism risk. Sperm also show changes in the chemical tagging of DNA that controls the activity of genes.

Establishing environmental cause unequivocally is almost impossible, because of ethical constraints. It’s one thing to examine blood or tissue samples for genetic variants that track with autism diagnoses. It’s another thing entirely to manipulate factors to see if they induce autism or not. No one’s going to deliberately infect a pregnant woman or have a group of men specifically delay fatherhood just to test how these factors influence autism odds.

Researchers instead are stuck finding correlations between these factors and then looking at available measures, such as changes in gene activity, accrual of mutations over the lifespan and studies of autism-like behavior in animal models. And as they look at these associations, they often make discoveries that are relevant beyond autism—ones that have now been extended to studies of schizophrenia, aging and even human evolution. The link between autism and having an older father, for example, has led to studies examining how changes in sperm over time affect brain development in later generations.

While most environmental candidates remain just that—candidates—Lyall says emphatically that one factor is out of the running: vaccines. “That’s pretty conclusively been shown to have no association with autism,” she says, noting the numerous large epidemiological studies that have reached that conclusion.

The settled vaccine question is a small point of clarity in an otherwise blurred landscape of autism cause-and-effect research. Every new finding seems to open up yet more pathways, some leading toward autism, and some toward broader revelations about the brain and how hormones, the immune system, the air we breathe and more add up to make their mark on neural development. The network of genetic and environmental factors that converge and diverge to produce autism may reflect not only the multiplicity of ways of being autistic—but also, more broadly, of being human.

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This article originally appeared in Knowable Magazine, an independent journalistic endeavor from Annual Reviews.