Thursday, December 22, 2016

How Visual and Literal Thinking Can Shape Autistic Experiences

Patricia George
www.persnicketypatricia.ca

Literal Thinking
[image: Two stills from the movie Singin' in the
Rain: Top: Gene Kelly as the popular actor Don
Lockwood being mobbed by fans, with white
overlaid text reading, "Hey, Cos, do something.
Call me a cab!" and bottom: Donald O'Connor
as Cosmo Brown, speaking nonchalantly with
white overlaid text reading, "OK, you're a cab."]
Before starting school, and before Mom remarried when I was five, it was just me, Mom, Grandmother, Grandfather, and a few other beloved close family members (my biological father was out of my life before I could remember him).

I didn't know how different I was from other people back then, not really. I felt different somehow; I always have, as though the most important secret in the world was whispered in my ear the day I was born, plus I just knew stuff even though I couldn't express that knowing very well. I always felt like I was a few seconds ahead, or behind -- but never quite in sync with -- the people around me.

Grandmother mostly raised me in the early years, and she really got me. I would wager real money that she was Autistic, too. After all, reproduction causes autism! Or did you think that we autistics were hatched? The genetics behind autism and inheritance are now so obvious to me.

My world drastically changed when Mom remarried, and my stepfather became part of my life. That change  started to reveal to me, and to others, just how different I was from other kids. It also exposed just how literal my thinking is. And it showed how dangerous that form of thinking can be, when those around me didn't understand how my mind worked, or how my thinking was impacted by my visual thinking.

My stepfather was different from anyone who had previously been part of my life, and we couldn't seem to get each other. I seemed to make him particularly angry because I responded so literally to his instructions, just as I always had before he was part of our family. Other adults were starting to get angry, as well. Because I'd do what they were literally asking me to do, I'd get it wrong.

None of the people who were exasperated with me recognized that how I do and don't process things is radically different from most of the rest of the population. Even though I could talk perfectly well (I didn't shut up, actually, I was hyper-verbal), and appeared "normal" in every other way. But I kept getting in trouble, and things like what I am about to describe kept happening.

(And can I ask a favour? If you are reading this, and you are a non-literal/non-visual thinker, or your child or student or client is, and you feel the need to tell me that non-literal people do these things too? Maybe, don't do that. Because that erases the fact that my actions were and are a direct result of my autistic neurology. Thank you.)

One day, my stepfather took me on an errand. It was summertime, and I was, as always, anxious, because I seemed to get so many things wrong whenever I was with him. I told myself, "try extra hard today, Patricia."

So when he parked our car and told me No-matter-what do NOT open any windows or doors until I get back, my brain locked that in: No Matter What. Don't Open Windows. Don't Open Doors.

He was gone for long enough that I started to get quite hot. But my literal-thinking brain, which was complying with my stepfather's directions to the letter, couldn't let my body open a door or a window. It absolutely wouldn't permit me to disobey.

Now, my stepfather was probably only gone for fifteen minutes. But as we've learned from so much increased awareness about leaving pets in cars -- and how quickly that can be fatal -- it doesn't take long to overheat in that situation, even when one isn't covered in fur.

By the time my stepfather returned I was covered in sweat, crying, nauseous, and upset.
“Why didn't you open a window!?”

“You told me not to,” I squeaked out.

“But you could have opened a window!?”

“You told me not to.”
Once again, I’d gotten his meaning wrong. How? Because I hadn't yet gained the ability to read nuances and social cues, plus I didn't yet have the pictures in my head that I usually used to understand what people wanted.

What I mean by "pictures": As a visual thinker, I need a picture of something in my head to make sense of it. This is one of the many gifts of learning about and embracing being Autistic later in life. I understand how to find the words I need, to explain things so non-visual thinkers and I can understand each other better.

Judy Endow's article on visual thinking makes this self-knowledge come powerfully full circle for me, especially as I read how she opens her article:
“I think in colors. My thinking colors have sound and movement. When I hear spoken words my neurology automatically goes for the match -- a match for the words I hear to a familiar concrete picture of something in the world outside my skin or to an internal picture I have stored in my memory.”
OH YES!!

Autism comes with wide range of sensory sensitivities. I recently heard being Autistic described as being in a constant state of osmosis. It feels like I take in everything around me, e v e r y t h i n g -- but that overwhelms and delays the processing of all that information. Much like a cache in a computer, the more pictures I am able to store, the quicker I can pull up relevant pictures to any given situation. It also affects how quickly I can process and respond.

It doesn't surprise to me that I started playing with, and asking questions about, my Uncle’s photo equipment when I was three years old, and taking my own pictures by the time I was five. If I were to survive in a mostly non-literal world, I needed as many outlets to expressing my literalness as possible.

Like many Autistic and neurodivergent kids, I have several co-occurring conditions that also affect the way I think. The one specific to my literal thinking is hyperlexia, which means I seemed to know how to read without needing to be taught, and read well above my age level. Before I even started school, I knew and could spell (and was fascinated by) huge and complex words. Numbers too. But none of those abilities helped me acquire or understand social skills. 

I was told, before I even went to school, to go look something up in the dictionary to understand it. And then I was quickly able to read books and encyclopedias. So literal me went ahead and did that in only a way an autistic person could!

And in those pages I learned how to fit in enough to get by, but not enough to not be bullied or have my real needs taken seriously. I was laser-focused on learning idioms and acronyms, on learning enough facts about anything I could, just so I could get through a basic conversation. 

Gusto-color
Tasting Color. Photo © Paul C├ínovas
[image: Blue-eyed man biting into
a rainbow-colored slice of watermelon]
I loved and still do love idioms, even though they are a minefield for a literal thinker. (Guess what my mind is seeing right now? Boom!) I also have something called synaesthesia, which can cross-wire and enhance my senses: I taste sounds, I smell pictures, some numbers are friends and others are enemies -- it's an interesting facet of neurology, and something autistic people seem to experience more than non-autistic people.

I can vividly recall -- as if I’m there now -- looking out the kitchen window at my Grandparents’ house. I am perhaps six, and it is raining but also sunny, and there is a rainbow. It is the most delicious colour outside, and the contrast of light and dark and colour makes my head spin.
“NANNY!?” I bellow. “NANNY! Come look! It's raining and sunny at the same time!?”

“The devil is beating his wife” she says to me.
And I stopped in my happy little tracks.
“The what??”

“The devil is beating his wife,” she replied again, like I was suppose to know what the heck that meant.
“Why would the devil beat his wife??” I asked,  almost in tears.

“Because he is angry with god for the sunshine” she replied
That seemed to satisfy me enough to let it go for the time being.

Remember how I said I am certain my Grandmother was Autistic? Even so, she did things to amuse or horrify me ALL the time, like using visual riddles. I know she did it on purpose. I also know she did it to help me better navigate the world, using our shared similarities and her life experience to present information in a way that would help me in the long run. Now that I can see what she was doing, I think it was very clever, though I didn’t at the time.

For instance, I wouldn’t wear socks, not even on the coldest winter days. Sometimes I even went barefoot in the snow. So she told me about the time when she was a child and didn't wear socks in her boots, because socks really bugged her, too. Then she lost track of time while sleigh coasting in the snow, and by the time she came inside, her toes had started to turn blue and then black.
“So what happened to your toes?!” I asked, looking at her feet.

“They just get sore in the cold,” she told me, “But had I been out there any longer, they would have fallen off.”
I think my eyes opened so wide she could see her entire reflection in them. And the image of my toes falling off was enough for me: I made sure to wear my socks and boots in the snow after that.

I didn't do well with superstitions either. If you are a parent of a literal/visual thinker -- please, be careful with the superstitions. Our superb pattern recognition skills can mix with superstitions to result in deep paranoia. I had to work very hard on coping strategies, and get therapy, to move past the debilitating effects of a literal understanding plus a visual mind, since I had so little understanding or accommodation.

When supported, literary and visual thinking traits can be positives. I see/hear/taste the tiniest change in a pattern, which can actually save lives as when I smell smoke long before there is noticeable fire. Or hear a bolt drop. Or see something hidden among the leaves on the ground.

Visual supports are crucial, so autistic visual/literal thinkers have images to match their language. There was a line in Judy Endow's article that actually incensed me:
“We do not know when we are little that most other people think with words rather than with colors and pictures.”
That insight blew my mind (so right now I am seeing a volcanic explosion coming from the top of my head) and even took me to the brink of anger, in trying to wrap my head around the existence of a reality so different from my own.

How the heck does a person think with words!? Words are pictures and colours. They are smells and sounds. They are a memory preserved as a snapshot. I have an ever-growing rolodex of word-images in my mind that allow me navigate and understand this world, to process Life the way my neurology requires. It’s really perplexing to me that’s it’s not that way for everyone.

Several of the sayings my Grandparents shared with me became touchstones in my life. One in particular was my grandfather's “It takes all kinds.” I broke down those words the way I always did with his seemingly incomplete sayings or thoughts: I saw them as puzzles to solve. I’d search for the corresponding word-images, then use my pattern recognition skills to find the logic in them.  I combined that with research and asking questions, and would eventually find my way to a complete picture, which I could store -- and recall the next time I needed it.  

For me, “It Takes All Kinds” is the crux of inclusion: the acceptance of our neurodiverse society, and of neurodivergent persons. (I only got to know those big “Neuro” words in the last few years, since my autism diagnosis.) I've had to find ways to merge my literal and visual thinking with such word definitions, because learning disabilities like dyslexia and dyspraxia make it difficult for me to "get" them, otherwise, and I struggle with grammar as well as getting the words down physically in a way that I can recognize. I don’t believe I’d be close to the writer that I am, without literal and visual thinking guiding me to make pictures with my words.

For your part, and in making an effort to be inclusive, please always presume competence on the part of individuals whose neurology is different than yours, and also work toward recognizing the different routes brains take to process and expressing their experiences. Accommodating a literal/visual thinker isn't giving into weakness -- it is supporting and validating a literal way of processing life. Anything that invalidates or seeks to change that way of thinking will damage that person in countless ways.

I've experienced inclusion and validation and it makes such a difference. And it’s a difference that many really seem to be seeking in the lives of those they love. Please know our literal and visual view of the world has so much to offer to society, and the world.

To thank you for making your way through this, here's a yummy quote for the visual thinkers out there! I “see” you!
“A waffle is like a pancake with a syrup trap.”
-Mitch Hedberg

Monday, December 19, 2016

Gifts Autistic People Actually Want, According to TPGA Community Members

by Shannon Des Roches Rosa

Finding gifts autistic kids and adults appreciate isn't that hard -- if you actually find out what individual people like, and you remember that everyone has their own interests and preferences (and that they're sometimes the exact opposite of other autistic people's interests and preferences).

We asked TPGA's community of autistic people, parents, and professionals about The Very Best Gifts, and compiled what they said below. Keep in mind that while disability representation among toy companies is improving, it still tends to be underwhelming. And not all gifts will be realistic for every person's or family's budget. But hopefully this list will be useful for thoughtful gift-givers.

Books

 Books Rule
[image: white child lying on an orange beanbag in
a library, reading a book titled The Fossil Factory]
At least five people told us they, or their kid, just wanted books. Specific advice included:
  • Picture books for pre-readers to page through
  • Graphic novels
  • Anything from the "ology" book series
  • Learning activity books

“My adult daughter who is on the spectrum, really liked the American Doll self care and friendship books growing up. There is one titled All about You. It helped to bring up new situations in an easy way.”

 

Characters & Themes

Thomas the Tank Engine 4Ever
[image: Wooden Thomas the Tank Engine toy train
and train tracks, arranged atop a map of the U.S.A.]

Lots of people said they like almost anything with favorite characters or themes, like Doctor Who, My Little Pony, Minecraft, Disney movie characters, Care Bears, Dora the Explorer, Lightning McQueen (Cars), or Thomas the Tank Engine. Options include:
  • Stuffed animals
  • Figurines
  • Posters
  • T-shirts (tagless if possible)
  • Toys
  • Bedding

 “My brother likes posters/artwork of his favourite Disney films to look at. Last year we got him the movie posters, but this year I got him a canvas from this artist who paints the unusual characters from Disney films, which I think he's going to love!”

 

“Godzilla figures from the original Japanese movies. Thank God for Ebay, Amazon and Japan.”

 

Clothes

Tie Dye for the People
[image: young white child wearing a tie dye t-shirt]
While clothes are definitely "something a person needs," many people have specific clothing requirements due to fashion preferences, visual preferences, or sensory sensitivities. Clothes our community members want include:
  • Tie dye shirts
  • Clothing soft without tags or high collars
  • Comfy clothes and sneakers
  • Soft cotton pajamas

 

Creativity and Construction

Free-form Lego and sculpting clay fun
[image: jumble of Lego and clay creations
on a brown circular ottoman, seen from overhead]

Creativity and construction got the biggest responses. Making things is a thing!

Art:
  • Arts and craft supplies
  • Drawing supplies 
  • Pens
  • Perler (iron-fusion) beads 
  • Scotch tape and printer ink and paper to make "shiny logos"
Construction:
  • Laser pegs
  • Lego (15 testimonials)
  • Lego Mindstorms (2 votes)
  • Magna-Tiles
  • Magnetic building blocks
  • Megablocks
  • Snap circuits (2 votes)
  • Wooden blocks of all shapes and colors
Creativity with a tactile (sensory/touch) aspect:
  • Kinetic sand
  • Play-doh (5 votes)

“I could never have enough Lego or books”

 

“Legos, Legos, and more Legos”

 

Devices


Our community members love their devices. While parents do need to be aware of how their kids use  devices, we caution against "screen time" alarmism, given that autistic people of all ages often rely heavily on their devices for play, learning, socializing, and relaxation. Devices people cherish include:
  • Computer
  • iPad (3 votes)
  • iPod
  • iPod (for listening to music)
  • Kindle
  • My laptop
  • Siri (iDevice personal assistant) 

“If only Siri was its own thing”

 

 Gaming 

Everybody Loves Minecraft
[image: child wearing a pink princess dress
and a cardboard Minecraft character head]
Gaming and video games were popular recommendations -- both dedicated gaming devices, and specific games and types:
  • Board game apps
  • Mine Craft (five votes)
  • Nintendo DS with games based on dress up, mathematics, and music
  • The Sims (2)
  • Roller Coaster Tycoon
  • Video games in general (3 votes)
  • Mario Bros
  • Sonic
  • Wii
  • Xbox (3 votes)
  • Zelda games

“All he wants are Steam gift cards.”

 

Pets

Puppy!
[image: A King Charles cavalier puppy}
While some autistic people avoid animals, many adore and even rely on their pets as both companions, and to counter anxiety and stress. Keep in mind that a pet is a big responsibility, so it is rarely a good idea to surprise someone with a pet as a gift, unless you are absolutely certain that they both want a pet, and that the pet will get proper care. We also know many autistic people who particularly attached to their cats. Specific TPGA community comments about pets include:
  • A pet no matter how small
  • Dog (Great Dane)
  • My dog
  • Puppy

 

Play

My Hot Wheels collection 5
Beautifully lined up toy cars. Photo © Bryce Womeldurf
[image: several lines of Matchbox toy cars.]
The way autistic kids play needs go be respected, as does the fact that many autistic adults remain enthralled by toys and topics non-autistic people consider "too young." Play items our community members like include:
  • Anything with wheels (for crashing the toys)
  • Cardboard boxes
  • Kikkerland wind-up toys
  • Lovies (plush animals)
  • Marble maze
  • Remote control cars
  • Slinkys (don’t last too long though)

“Matchbox cars are life for him. Nothing better to line up by colour and type.”

 

Puzzles

Yep, lots of autistic people like puzzles. Almost as much as many autistic people (and those who care about them) loathe autistic people being characterized as puzzles:
  • Every kind of puzzles
  • Jigsaw Puzzles
  • Puzzle balls
  • Tangrams by Melissa and Doug

 

Retreat Spaces 

A space of one's own
[image: child crashing on a padded bed/wicker pod
in the middle of San Diego's UTC mall]
Autistic people often report being overwhelmed whenever in any shared or public spaces, especially when those spaces include other people. Having a dedicated retreat or private space can make a big difference in an autistic individual's personal anxiety and stress levels. Some options include:

 

Sensory 

For some folks, there's nothing better than being squished
[image: happy white teen boy lying under a big beanbag,
while another person lies on top of the beanbag]
Sensory-themed gifts falls into several categories, but the good ones are alike in that they allow a person to control sensory input themselves. This is helpful because being overwhelmed by and/or seeking sensory input are common autistc traits, but aren't always taken seriously, or accommodated. 

Compression/pressure:
  • Beanbags (3 votes), Yogibo beanbags specifically (2 votes)
  • Big heavy blanket
  • Bodysock -- homemade (from spandex)
  • Resistance bands (exercise or workout bands) (2 votes)
  • Weighted blanket (3 votes)
  • Weighted vest (hunting vest filled with beanbags)
Noise filtering:
  • Ear protectors
  • Head phones
  • Sennheiser headphones 
Oral:
Proprioception:   
Tactile:
  • Beads
  • Fleece anything
  • Fleece blankets/sheets (3)
  • Jellycats
  • Kinetic sand
  • Koosh balls
  • Plushies
  • Soft fabrics
  • Speakers (for feeling vibration of the beat when he touches the speakers)
  • Theraputty (2 votes)
  • Water beads
Visual (note that flashing lights can be epilepsy triggers, and epilepsy is more common autistic people than non-autistic people):
  • Anything with flashing lights or novelty lights of all kinds
  • Any toy that lights up, flashes, or spins
  • Colored flashlight
  • Fiber optic lamp
  • Lava lamp (3 votes)
  • Marble run
  • Plasma ball lamp
  • Spinnyos Giant Yo-ller Coaster

“Sound filters/attenuated ear plugs/similar stuff are great for situations where noise cancelling headphones would isolate one from participation but sound is an issue.”

 

“The ceiling-mounted indoor platform swing was also the best $150 that I ever spent. Every kid that comes to my house loves that.” 

 

“Anything that spins or can be chewed. Preferably either purple or with turtles.”

 

Stimming

Beads made by students at AACT in Ghana
[image: a handful of colorful stringed beads]
Stimming gift options often overlap with sensory gift options, so we often send people to the autistic-owned company Stimtastic.co for both categories.
  • Fidget Cube
  • Fidget toys (4)
  • Glittery stim toys
  • Lollipopter
  • Mardi Gras beads
  • Satin ribbon streamers

“Fidget toys! [Forever Fidgets] are awesome for older kids and adults, super strong, discreet and cheap!” 

 

“Perfume. I love olfactory stimming.” 

 

“Shiny jewelry with bits that move or spin round and are designed to be fiddled with.”

 

“New hand mirror to carry around at all times to watch himself talk.” 


A final consideration: If you shop at Amazon.com, remember that you can also benefit autism non-profits through your purchases, via Smile.Amazon.com. Both the Autistic Self Advocacy Network and Autism Women's Network are Smile shopping options. Happy gifting!

Sunday, December 11, 2016

Why Belittling Self-Advocates Hurts Autistic People of All Ages and Abilities

Sparrow R. Jones
unstrangemind.com

[image: Screenshot of Inigo Montoya and Vizzini from
the movie The Princess Bride, with white overlaid block
text reading, "You keep using that word. I do not think
it means what you think it means.]
Last week, the San Francisco Autism Society of America (SFASA) held its 16th annual conference at Stanford University. In her opening comments, Jill Escher, the president of SFASA, went through a few words and phrases, claiming to “defuse some autism vocabulary stinkbombs.”

I disagree with so much of what she said about ... well, about pretty much everything she talked about. But I want to focus in on one word that I feel she completely misrepresented on so many levels that it was mind-boggling:

Self-advocate


Escher chose to show a 20 second video clip of her son to the audience, to illustrate her lack of understanding of the meaning and expression of self-advocacy. In the course of enacting conservatorship, the court sent a social worker to Escher’s house to investigate the situation and ensure that conservatorship was called-for, and not an abuse. The video clip showed a social worker querying her son in a patronizing, sing-song voice -- the sort of syrupy voice that makes small children cringe and should never be used on an adult, whether that adult requires 24/7 lifelong support or not.

“Can you tell me where you live?” the court investigator cooed. She paused and waited while Escher's son ignored her question. “Can you tell me, when is your birthday?” Again, no response. “He’s non-verbal and non-responsive,” the social worker declared.

The clip ended and Escher announced that this 20 seconds of video was proof that her son is not a self-advocate. She said that calling her son a self-advocate denigrates his reality and, “denigrates those who actually bear the physical, intellectual, financial, and legal responsibility to care for people like this.”

There is so much wrong with what Jill Escher did and said that I’m feeling overwhelmed, trying to decide where to enter this mess.

In no particular order:
  • “Self-advocate” is a title that needs to die a quiet death.
  • Self advocacy skills are not limited to speech.
  • I have watched another Autistic do nearly the same thing as Escher's son and his silence was an act of self-advocacy.
  • Skills of self advocacy come in many forms and accompany many different types and levels of support need. Self advocacy is not an on/off, “you have it or you don’t” sort of thing.
  • It’s not a competition.
  • Never exploit your children as part of your political argument!
Having planted my entrenching tool in a few different heaps, I am now calm enough to unpack some of those bullet points.

The term “self-advocate” was a useful phrase (it arose in hospital settings where it was applied to patients who became actively involved in their own care), but it has been extended far beyond its initial usefulness, to the point where the phrase has become weaponized. I’m not talking about skills of self advocacy; I’m talking about the noun “self-advocate” when used as a title or label applied to someone.

So often, “helpful” people insist I should not call myself Autistic because, “it’s just a label and doesn’t define you.” But some days it feels like everyone wants to call me a self-advocate (including, ironically, some of those people who wish I would stop calling myself Autistic). I hate re-inventing the wheel, so if you want to know more about why I think the label “self-advocate” is often used as a way to diminish the powerful work of Autistic activists and advocates for others, read my blog post, Don’t Call Me a Self-Advocate.

When “self-advocate” is being used as a euphemism for “highly articulate Autistic activist,” no, Jill Escher is right: during the 20 seconds of video, her son not depicted as being a self-advocate. This is not to say that he will never be articulate or speak out about autism or speak on behalf of other Autistics. I have many friends who do not use their voices to communicate yet their words speak powerfully of our humanity, dignity, and rights. While I would like people to stop calling us self-advocates when we are actually advocating for others, not only for ourselves, I must also pause to recognize some of the tremendous unspoken voices available for you to read: Amy Sequenzia, Emma Zurcher-Long, Tracy Thresher, Larry Bissonette, Barb Rentenbach, Mel Baggs, Tito Mukhopadhyay, Lucy Blackman. While I would like to see the label “self-advocate” go away, the lives and work of the Autistics on this list demonstrate that speech is not required to be a highly articulate Autistic, activist or otherwise.

Twenty seconds of video footage tells us so little about a human being and his complex life. Does Escher's son have any means of communication at all? What means have been offered to him and how were they presented? So many therapies are “speech-or-nothing.” So many therapies take away AAC devices if an Autistic is caught “playing” with them (imagine if we took away a baby’s voice whenever it babbled and refused to allow it vocal cords until it could commit to only using them for serious communication!) I feel I know so little about Escher's son from that brief clip, but the main thing I do know is that what separates the young man we see for 20 seconds from Autistics who identify as self-advocates or have the label thrust upon them is communication.

Escher's son can be in genuine need of 24/7 care and have a high need for a great deal of support while still exhibiting skills of self advocacy or while being a highly articulate activist or advocate for others. Someone else (myself, for example) can have much lower support needs (although you must not fool yourself into believing I have no need for support and assistance at all. Just because my needs are lower does not mean they are low) and be extremely articulate (particularly in writing) and also exhibit skills of self advocacy. My self advocacy and Escher's son’s do not look the same, but we both have self advocacy skills and we both deserve the supports we each need, despite how different we are.

What is being denied to Escher's son when his mother says he is in no way a self-advocate is a sense of agency and autonomy. With 20 seconds of video and the claim that he is not a self-advocate, his mother not only puts him on display as little more than an illustration for her political and personal beliefs about autism, she sweeps his agency out the door. Because if he is hungry and points at food and makes urgent grunting sounds yet Escher's son is not a self-advocate, what is he doing? Surely he is not asking someone to feed him because that would be an act of self advocacy. So he must be misbehaving or, worse, engaging in pointless behaviors. When Escher's son’s hunger continues, combined now with the frustration at his very real lack of agency since his clear request for food was denied and ignored, perhaps he will become so angry that he punches a hole in the wall. Now he is dangerously violent and must be restrained for his own good and to preserve the safety of others.

This is not just wild speculation on my part. While I do not know Escher's son, I do know scores of other Autistics and I have heard and read their stories and watched these types of scenarios play out in their daily lives. So many Autistics are grossly mishandled by people because they are assumed to have no communication or skills of self advocacy. They are denied agency in their lives and their actions are misinterpreted in harmful ways that lead only to a continual decline in their quality of life.

Who, in frustration at being told they were not really communicating, would not choose to detach from the world? Why would you want to try to be responsive to a world of people who don’t understand you and seem not to be even trying? Who, in anger at having their agency stripped from them, would not resort to force to try to get their needs met? Who among us would not want to express their painful sense of injustice by lashing out at a world that is confusing, painful, and eternally disappointing?

I have a friend who is five years old and Autistic. I watched one day as an evaluator came to his house to test him. The evaluator spoke with the same syrupy voice as Escher's son’s examiner, and I watched my young friend respond to her with clearly visible disgust. My friend did not answer her questions and refused to do the things she asked him to do, even though I knew he could do many of those things quite well. He is a very clever young man but all the evaluator saw was a non-responsive, defiant, angry child. She tried her usual threats and manipulations but he saw through them and she was quickly forced to pack her bag and leave. My friend’s refusal to engage with the condescending examiner was an act of self advocacy and I am proud of him for maintaining strong boundaries and refusing to be forced to do things that feel wrong and insulting to him.

When one of my friend’s parents told the evaluator that my friend did not like her, she was genuinely shocked. I don’t think she understood her own tone of voice and how triggering it can be to people who are regularly treated as incompetent and denied agency in their own lives. She thought she was friendly and fun and could not grasp why someone would be put off by her approach. It made me sad because she cannot change what she is not able to see.

I think Escher is similarly confused. She called the court evaluator a nice lady and probably doesn’t understand how demeaning the evaluator’s voice was. If I were Escher's son, I would not want to respond to that voice, whether I could speak or not. And I’m trying to explain how it is that the examiner’s patronizing approach and Jill Escher’s refusal to consider the possibility that her son could be a self-advocate (despite Escher’s claim that many people tell her that her son is a self-advocate) are cut from the same cloth -- both are infantilizing presumptions of a lack of competence that imply or require a denial of agency.

Jill Escher exploits her son’s image and denies his agency as part of a political stance in which she views people like me and our families as being in direct competition with people like her son and their families. Escher is viewing supports as a zero-sum game in which any amount of money, medical care, or time I get is stolen from the money, medical care, and time that Escher's son needs. By emphasizing that her son is not a self-advocate, she tries to set up a dichotomy in which people like me -- people she would call self-advocates -- do not need any help in life and do not deserve any benefits or supports while people like Escher's son -- so clearly not a self-advocate that 20 seconds are all we require in order to confirm her belief -- needs all the help and all the benefits and supports.

I need what I need. Escher's son needs what he needs. And all of us, our entire society, needs to accept that and work to meet the unmet needs of all Disabled people, regardless of the type of disability or the level of support we require. It’s not about some of us being written off as “self-advocates” or some of us being written off as being incapable of self advocacy. That’s just the same song with different words. If you aren’t familiar with the tune, go read anything any Autistic has written about “function labels.”

Escher is singing the familiar refrain of “my son is so low functioning! So please, world, take care of him when I am gone. Those people who can write or speak about their autism are so high functioning! Don’t let them steal what my son needs to survive!” It’s the second verse of the song but don’t let the lyrics fool you; it’s the same tired melody that hurts us all.

Saturday, December 10, 2016

How to Avoid More Cruel Injustices Like the Alex Spourdalakis "Involuntary Manslaughter" Verdict

Shannon Des Roches Rosa
www.squidalicious.com

Alex Spourdalakis
[image: Smiling white teenage boy
with shaved dark hair, wearing
a coral colored tank top.]
Alex Spourdalakis was brutally murdered by his mother and godmother three years ago. Somehow, those women were allowed to plead guilty to involuntary manslaughter* and will likely be released with time served -- even though they had been planning Alex's killing for a week.

As reported by Matt Carey at Left Brain/Right Brain:
"When they carried out their plan, they poisoned Mr. Spourdalakis with sleeping pills. When this did not work quickly enough, the mother and caregiver stabbed him. Not once, not twice, but four times, including two stabs to the heart. When even this proved not fast enough, the mother and caregiver slit his wrist. Slit so deeply that reportedly his hand was nearly severed from his arm. When Mr. Spourdalakis finally passed, the mother and caregiver turned the knife on the family cat. After cleaning the knife, they returned it to it’s place in the kitchen. The mother and caregiver then took large doses of sleeping pills, the method they had just found to be ineffective in the murder of Mr. Spourdalakis."
Legally twisting this onslaught of murder attempts into a involuntary manslaughter plea is shocking and disgusting, not to mention extremely worrying as a precedent. But that is what happens when our society is allowed to paint high-support disabled people like Alex (and like my own son Leo) as burdens rather than fellow human beings, and their parents as victims.

We need to keep the focus on the actual legal victims: The disabled people who get abused and killed. We need to speak out about Alex deserving the same justice that autistic teenager Issy Stapleton was given after her mother was sentenced to prison after trying (and failing) to murder her, as related by attorney Sam Crane:
"it’s really going to be very dangerous to [Issy] — and to many other people with disabilities — if the court sends the message that we should just expect abuse. That her disability is so severe that she should just expect to be abused by those around her because they are so stressed out. And that’s basically what it would mean if the court were to say that the abuse simply was a natural result of caring for a person with a disability."
If we want to prevent future tragedies, we need to challenge the status quo about the value of disabled people's lives. We need to speak out about the huge, huge chasm between understanding that parenting is hard when neither you nor your child have the resources you need, and justifying the murder of dependent disabled children. As I wrote after Issy Stapleton's mother tried to kill her,
"If you identify with a murderer rather than a murder victim or if you become upset when people criticize parents who hurt or kill their disabled kids, then maybe it's time to think about how you found yourself in that dangerous mind space and start making changes to help you, your child, and your family."
We also need to speak out against autism misinformation and pseudoscience, given that Alex's mother rejected all kinds of legitimate supports for Alex due to Andrew Wakefield and his band of fellow quacks convincing her to embrace pseudoscience instead.**

Another needed action: speaking out, and to, our community's families who are susceptible to crisis, so they know that they are not alone, and also know what their options are:
"Being in crisis is not the same as being a failure. Nor is it a personal failure to admit you and your child need help. So we need to work past fear and misinformation, and get educated about what our support options are, both during emergencies, and in general. Misinformation can lead to tragedies, as when parents absorb media-propelled myths that it more understandable for a mother to try to kill her child than to call Child Protective Services (CPS) on herself if she's thinking about harming that child. These dangerous myths sometimes persist because parents don't actually understand the role of CPS in protecting both children and families, nor are they aware of emergency services or rights-based services that were always available to them, if they'd known or been told where to look."
We need to help parents understand that there are usually reasons why high-support autistic people are aggressive or self-injurious, often communication-based or medical reasons. And as Dr. Clarissa Kripke says, we need to do our best to accurately observe people's life circumstances, and change them for the better:
"We cannot manage behavior in the context of unacceptable lifestyles. If someone’s situation, their social environment, the activities they’re doing, the people they are with, their physical environment is unacceptable to them, then that is the problem that we need to fix. For example, if they can’t be in the room because that air conditioner is too loud, and causing them such discomfort that they feel like they’re going to melt down, the solution isn’t to punish them, to yell at them, or to tell them they’ll be strapped to that chair if they don’t stop their behavior -- the solution is to turn off the air conditioner, or, if that’s not possible, to move to a different environment. The problem isn’t always obvious. Often, it isn’t anybody’s fault."
Finally, we need to heed what autistic people themselves say about what it feels like to be in crisis, as Brent White and Lindsey Anderson recently discussed:
"It’s important to remember that when someone is struggling, they are not being “bad” or trying to do something to you personally -- even though it can feel like that, especially if they’re screaming at you or making you angry."
None of these actions or understandings will bring Alex back. None of them will get him the justice he deserved. But if you help counter all the misinformation and ableist social attitudes that contributed to his death, with resources for helping autistic people and their families live better and safer lives, hopefully that can help prevent future tragedies.


*I am not linking to any news articles about the involuntary manslaughter verdict, as every one I've seen justifies Alex's murder on account of his disability. These articles are are easy to find online.

**For more information on how the autism huckster Andrew Wakefield pumped Alex Spourdalakis's family for adoration and publicity, and then left them far worse than when he hijacked them, please see Matt Carey's review of the resulting hoaxudrama Who Killed Alex Spourdalakis.

Wednesday, December 7, 2016

Autistic Inertia: An Overview



Sparrow R. Jones
unstrangemind.com

Image description: a photo of the Mason Dixon line from
about 20 miles away, taken by Sparrow Rose Jones at
the Maryland/Pennsylvania border near
Clear Spring, Maryland on October 4, 2016
I was talking with my boyfriend yesterday about autistic inertia. I was describing how it affects me and bemoaning the fact that it’s so clearly a real thing that exists but I never see researchers or educators talking about it -- just us Autistics. We know it exists, we know it’s a real thing, but it’s not in the official literature and no one is researching it.

After I described it a bit, my boyfriend remarked upon how similar it sounds to what people with Parkinson’s experience. Upon reflection, that didn’t surprise me too much since Parkinson’s is linked to dopamine and I’ve read autism research that talks about irregularities in dopamine and seratonin in the autistic brain. He did a little searching and found a study using Parkinson’s medications on autistic people that reported little improvement. But he also remarked that if the researchers weren’t specifically looking for improvement in autistic inertia, they may have missed some of the effects of the medication.

I promised my boyfriend that I would send him some links to things fellow Autistics have written about autistic inertia. At the same time, I realized it’s been a while since I updated my blog and so I thought I would just share the information here in case it’s helpful to more people than just myself and my amazing boyfriend who is always so willing to go out of his way to understand me better.

The first thing I ever read about autistic inertia was Anna Sullivan’s handout from her presentation at Autreat 2002: Inertia: From Theory to Praxis. Sullivan talks about the different manifestations of inertia and her descriptions make it clear that inertia is not one single thing. From what I can see, there are elements of executive dysfunction, of low energy/hypotonia, and of being out of touch with one’s body and emotions. And this is just the beginning, from what I can tell. One thing Sullivan doesn’t mention, though, is the idea that inertia is a difficulty in “changing gears.” You will see the professionals talking about “gear changing” issues sometimes and that’s a part of inertia, although not all of it.

Also, Sullivan doesn’t mention that inertia in autistics is not dissimilar to Newton’s inertia, in that not only do we have difficulty starting things if we’re stopped but we also have difficulty in stopping things if we’re started. As I told my boyfriend yesterday, when I start researching for a paper, I have a hard time stopping the research and starting the writing. So I will end up with enough research material for seven papers before I ever manage to make myself stop researching and start organizing my material and writing it out. It does mean that my papers tend to be really good since I know far more than I end up putting in writing. But it also means that it doesn’t matter how early I manage to start working on a paper, I will always be scrambling to finish it at the last minute.

Something very important that Sullivan points out is the unevenness of skill sets in autistics. That is, an autistic person might be able to do something easily one day but run up against severe inertia with the same task on another day. Autism isn’t something constant and steady-state but rather something variable, more like multiple sclerosis, fibromyalgia, or lupus. What we can do one day, we can’t do every day. What we can’t do one day, we might be able to do on another. This, in my experience, has been one of the hardest things for people around me to grasp. People seem to expect some sort of constancy and consistency in the people around them and I’m just not able to provide that steady, constant level of skill and ability. Some days I easily “pass” for non-autistic while other days I am quite obviously Autistic, no matter who you ask.

Sullivan ends with a suggested reading list. Since the article is older, one item on the list might be supplanted with a newer book. Sullivan lists “Punished by Rewards” by Alfie Kohn but I might recommend also reading (or reading instead) “Drive: The Surprising Truth About What Motivates Us” by Daniel H. Pink.

Sullivan mentions a posting from Kalen and it’s really good so it should be on the to-read list as well: Inertia: by Kalen. Kalen writes about inertia from a more Newtonian perspective, including both getting stuck within a task as well as getting stuck trying to do a task. Kalen also mentions how disabling inertia can be in a person’s life. It was a relief for me to read someone else describing inertia that way because it has certainly prevented me from doing many things I really wanted to do and it’s hard not to feel lazy or inadequate about one’s own inertia without the proper understanding of what it really is and what it really means.

Kalen describes inertia as “a combination of attention shifting and motor planning difficulties” which definitely resonates with my experience. There are times when I am only able to act by willing my body to perform and just as many times when I cannot get my body to perform, no matter how much will I exert. When I lose the ability to speak, I can think about the sounds that I want to create. I can think about the ways my mouth and throat and lungs move when I generate those sounds. But I cannot will my body to speak. It is as baffling to me as it is to those around me, but I can think the words -- I can even type the words -- but I cannot speak the words when I am in a state of “speaking inertia.” Just as there are times when those around me feel I might never shut up, there are times when it seems I might never speak again.

Kalen offers a few suggestions for how to work with or around inertia, warning that not all suggestions will work for all people, nor will a suggestion that works sometimes for someone work every time or in every situation for that person.

Aspergia Jones writes about the idea that autistic “special interests” might actually be a form of inertia in her blog entry on her site, Letters from Aspergia. She talks about inertia as a sort of “stuckness” and mentions how much more we Autistics tend to get overtaken by “ear worms” -- music stuck in the head. Or movies stuck in the head. Or anything stuck in the head. I have gotten stuck on a word or phrase and ended up repeating it over and over. In my opinion, yes, “stuckness” is inertia, whether it’s being stuck on a special interest or stuck on song lyrics or just stuck.
In the original version of this blog post, Aspergia Jones posted a comment:
Thanks for the link! You’re right, very very little is written about autistic inertia, even though it really is A Thing -- personally, it can be more disabling than the social stuff. I think the research tends to concentrate on the things about autism that are a problem for or seem weird to neurotypical folk, like stimming and differences in social interaction. Things that affect us deeply but don’t affect those around us -- like sensory/motor stuff and inertia -- get a lot less press.
Although, just as with every other aspect of autism, it is easy to assume that all difficulties trace back to an autistic trait even when they don’t. On LiveJournal, ChaoticIdealism writes about Autistic Inertia and Sleep in a way that makes it clear to me that they are living with Non-24-Hour Sleep-Wake Disorder and assuming it’s actually a manifestation of autistic inertia. I can really relate to that since I originally thought that my own Non-24 Disorder was actually Autistic Burn-out. (That’s a whole different blog entry, but you can read about autistic burnout in Amanda [now Mel] Baggs’ excellent essay Help! I seem to be Getting More Autistic!)

Ali/Eliot writes about inertia and perseveration as two sides of the same coin in his blog entry, Stare Up at the Sky. He talks about how difficult it can be to make decisions -- everything from big decisions like buying a new laptop to little decisions like what to eat for lunch. He talks a bit about how his partner, Kitty, does thing to make it easier for him to eat regularly and make other decisions.
This blog entry is no longer available. In the original post of this blog entry, Ali wrote a comment:
The post you’re referencing of mine is a couple of years old, and my thoughts haven’t drastically changed so much as refined a little. Inertia and choice paralysis (which isn’t a term I used in that entry but I think is self explanatory?) also happen for people who are perfectionists -- and I’m that, too. The basis is entirely different, at least in me. Autistic inertia is most of what I listed in the post originally: needing external or internal prompting to begin or end a task (or part of a task), where task is a value-neutral word for any possible thing you could be doing. The perfectionist inertia is more about the choice paralysis: you can’t pick which option because one of them will be the wrong option or at least not optimal, so until you have all the data ever you’re stuck. I think my long example in the post about laptop purchasing is actually more related to perfectionism than to autism.
There’s overlap between the two, but thinking about them as separate things has helped me sort out what I can consciously change (the perfectionist stuff) and what I can’t or find very difficult to change (like remembering to eat if I’m distracted). And it’s been almost like there’s inertia about my inertia: when I can handle the perfectionist stuff, it makes it easier to brain together some of the physical inertia or get the song I’ve had stuck for over a week out of my head.
Andrea has a few tips on how to battle inertia in her blog entry Coping With the Inertia of Task Paralysis. But, as a commenter points out: “Great ideas, Andrea, but how the heck am I going to remember to do all that? I have a hard enough time remembering to remember and now I’m supposed to remember the reminders for remembering? Help! I’m trapped in an infinite regress!”

I’m sure there is much more out there on autistic inertia, but the above is a fair introduction to the topic. Please do discuss this in the comments! I really want to hear from anyone and everyone about inertia, whether it’s personal experiences or scientific (or even pseudo-scientific) theories. This is a topic that needs to be understood much better than it is and right now we are the ones hashing the ideas out. It’s up to us to figure out what’s going on and what to do about it.

Thanks for reading and I look forward to hearing from you all!



Republished with permission from unstrangemind.com.

Author's note: This is a re-blog of a post originally made on January 2, 2013. It has been slightly edited for grammar, clarity, and availability of external links, but not for content.

Wednesday, November 23, 2016

Never Again: Why The Incoming U.S. Administration Is Dangerous For Autistic People (And So Many Others)

Sparrow R. Jones 
unstrangemind.com

“These are dangerous days / to say what you feel is to dig your own grave.” -Sinead O’Connor

Sparrow R. Jones
[image: Portrait photo of a white person with short
dark gray hair, glasses, and a maroon button-up shirt.]
I blame myself.

I should have campaigned more strongly. I should have written about the political landscape and how it affects disabled people in general, and Autistics and those who love us specifically. But I have always been told that one shouldn’t talk about politics, sex, or religion in polite company. I’ve already broken the sex talk taboo so many times over that I was reluctant to tread on religious or political ground.

And I didn’t really think he would win. I honestly didn’t. Everyone I’ve spoken with who voted against him has said the same thing: we didn’t see this coming.

Wow, were we ever wrong. Donald Trump won the election. Please forgive me for not talking about politics before. I can rationalize that choice all I want, but I really have no excuse: I spent ten years at university studying political science and associated topics (history, applied economics, psychology, sociology). As a former educator in political science, I had a responsibility to talk about what was happening. Of course I couldn’t have stopped a Trump presidency single-handedly, but I regret not trying harder than I did.

Not only was I intimidated about the social norm against talking about politics, but I was intimidated by Trump’s bully tactics. And, I confess, I was intimidated by the response to Trump from the broader liberal community. I felt like I got repeatedly thrown under the bus to provide traction in the political mire, and I feel like I’m still being thrown there now that things have reached a crisis point.

Since the election, I have been seeing lots of people who voted for Trump (including my own blood relations) calling for us to unify under our new president-elect. Don’t worry: I am not going to ask that of you. The same people who are beckoning to us now are the ones who railed against Obama for eight years. Remember all their dissent and anger? Yet somehow they pretend not to understand why we are angry and frightened now.

I am going to ask for unity among all of us who are so vulnerable in the face of a Trump presidency. I do not believe this election is “business as usual” for the United States. As an adult, I have lived through every presidency from Ronald Reagan forward, and I have never felt this to-the-bone level of fear at the election of a new president.

I am going to just go there and say it: the voting populace of the United States has elected a white supremacist who is sexist, homophobic, ableist, transphobic, xenophobic, bigoted and a shameless liar, and who could propel us into the next world war, the next civil war, or both.

There is a saying: “history repeats itself.” George Bernard Shaw pointed out that, “if history repeats itself, and the unexpected always happens, how incapable must Man be of learning from experience.” Philosopher George Santayana left us with his most famous statement that, “those who cannot remember the past are condemned to repeat it.”

It is my firm belief that history is repeating itself at this moment.

My training as a political scientist and my Autistic skills of pattern recognition have combined to make me realize that we are in the process of repeating what happened in Germany of the 1930s. I already know what you’re going to say: you’re going to accuse me of violating Godwin’s Law. I have three things to say in response to that:
  1. Godwin’s Law merely says “As an online discussion grows longer, the probability of a comparison involving Hitler approaches 1.” In other words, the longer people talk online, the greater the likelihood that Hitler will be mentioned. There is no implicit judgment in Godwin’s Law. Just because this discussion is reaching a comparison involving Hitler more rapidly than any other discussion I have taken part in before -- excluding one graduate class, CMP 4481, Rhetoric of Hitler and Churchill, which pretty much ‘went there’ in the catalog description before anyone ever opened their mouth -- does not mean that the comparison is unjustified. Which brings me to the next point:
  2. Citing Godwin’s Law can be a way to shut down someone who is making an unjust comparison to Hitler, but it can also be used to try to shut down someone who is pointing out an unpleasant, frightening, or offensive truth. I believe those who will be tempted to fling Godwin’s Law at me over the things I am about to say are not ready to hear these words. Their citation of Godwin’s Law reflects more on them than on me.
  3. Back in December, Godwin himself said, “If you're thoughtful about it and show some real awareness of history, go ahead and refer to Hitler when you talk about Trump. Or any other politician.” So, with Godwin’s blessing, I will proceed.
If you know anything at all about how World War Two went for minorities -- racial, ethnic, religious, sexual, the disabled -- you will understand why I am terrified, and why I am saying right now that we have to band together, all of us. We need unity. Not unity behind our new president, but unity against the human rights violations that our President-elect shows every sign of bringing to us in full force. Hitler took power by declaring a state of emergency, due to violence. The Reichstag Fire Decree and the Enabling Act gave Hitler the same incredible amount of power that Donald Trump could easily pluck like the low hanging fruit it is, by pointing to current protests as a violent danger to the State, and declaring Martial Law.

The coming administration is dangerous for Autistics and other disabled people (and our families) for many reasons, including Donald Trump’s openly mocking a physically disabled reporter, and calling Deaf actress and activist Marlee Matlin the R-word. He has repeatedly demonstrated a lack of respect for the dignity of disabled people at a level rarely seen outside of grade-school bullies.

Although one of Trump’s campaign promises was to preserve Medicare, Medicaid, and Social Security, he has already chosen advisors who want to bury those programs. Sam Clovis is on record as supporting privatization of Medicaid and Social Security, a move that would leave the door open for moves like Texas and Alabama have already made: removing access to Medicaid for poor families that earn more than $3,629 for a family of three. John Mashburn also wants to cut funding, and has specifically targeted families with disabled children. Mashburn accused parents of children with neurological disabilities of “gaming the system” and claimed that 53% of children on SSI are not really disabled because they are not physically disabled. Have no doubt that the coming administration wants to take away your Autistic child’s benefits. Eleven percent of children receiving SSI benefits are Autistic, 21.4% have other developmental disorders, and 8.9% have an intellectual disability. These are the children John Mashburn wants to target.

The coming administration is dangerous for People of Color because: Trump has repeatedly made so many racist statements I can’t even begin to include them all here. He criticized the Judge who presided over the Trump University case, saying Gonzalo Curiel wouldn’t be fair because “he’s a Mexican.” (Curiel was born in Indiana.) As part of his stance against immigration, Trump repeatedly said most Latino immigrants come to the United States to rape people and commit other crimes. Trump was one of the most prominent “Birthers,” who questioned Obama’s citizenship and right to serve as President -- typically a ruse to cover their rejection of a Black man as President of the United States. Donald Trump has been sued twice (1973 and 1976) by the Department of Justice for refusing to rent apartments to Black people. Trump has a long history of complaints against him for mistreating Black employees, and in 1992 he was fined by the New Jersey Casino Control Commission for racist practices. He even managed to insult and stereotype Blacks and Jews at the same time when he said, “Black guys counting my money! I hate it. The only kind of people I want counting my money are little short guys that wear yarmulkes every day.”

In February, Trump refused to condemn the KKK and their former Imperial Wizard David Duke for endorsing his presidency, claiming he didn’t know what the CNN moderator was talking about, and that he had no idea who Duke was -- a statement that has since been proven to be a lie. Even if Trump really does oppose the KKK, how can we trust a candidate who has garnered such heavy support from white supremacist organizations, with a prominent KKK leader telling a television reporter that “The reason a lot of Klan members like Donald Trump is because a lot of what he believes, we believe in”?

Donald Trump’s presidency will be dangerous for Muslims because Trump has promised to build a registry of U.S. Muslims. Recently it was announced that the incoming administration believes such a registry would be a Constitutional move, based on the court precedent of the Korematsu case that defended the Japanese internment camps during World War Two. While Dani Alexis brilliantly shreds the use of Korematsu as grounds for a Muslim registry the fact that Trump is so heavily targeting all Muslims makes him a threat.

A frightening development stemming from the U.S. having elected Donald Trump is that his hatred is enabling others who are filled with hate toward various minorities. Stories of insults and attacks from across our country, with the attackers mentioning Trump’s name, keep pouring in because the attackers know Trump strikes fear into people’s hearts. The President-elect, the future leader, is by example instructing his followers as to the type of behavior and language that are now appropriate. He has modeled mocking disabled people. He has modeled rape and abuse of women and children. He has modeled racism, xenophobia, homophobia, transphobia, and more. And we are now seeing citizens act in similar ways, and worse. The Southern Poverty Law Center (SPLC) has reported over 700 Trump-related incidents of hateful harassment since the election. By contrast, the SPLC has recorded only 27 anti-Trump incidents.

I am calling for unity against the incoming administration's assault on everything that has actually made America great. An old saying claims that democracy is two wolves and a sheep voting on dinner. What makes the United States shine is our assertion that sheep have rights. Not that we have  been perfect in recognizing or protecting those rights, by any stretch of the imagination, but the history of the United States has been a narrative of struggle and advance in declaring rights for Black people, workers, children, the disabled, women, and many other marginalized or disenfranchised members of our society. The wolves and sheep may have been voting together, but they have been doing so in a political culture that ideally works to honor sheep’s rights. Trump’s idea of making our country great is to roll back all that progress and put mutton on the menu.

I am calling for unity because I do not currently see it. During the campaigning period, slams against  Trump unfortunately and too often used vulnerable minorities as a cudgels against him. For example, there were the statues that body-shamed him. As a trans man, it really hurt to see how many of my liberal friends were gleefully mocking a man, by mocking his genitalia. Thanks to my connective tissue disorder combined with the current state of technology in genital reconstructive surgery, I will never have genitalia that look and function the way my friends insist the genitalia of a real man, worthy of dignity, should. Do you think people should laugh at me and publicly shame me for that? When I tried to tell my friends how terrible that statue and their laughter made me feel, I was casually dismissed as being too sensitive or not getting the joke. Body shaming is not funny to me, and using it against someone because they are racist, sexist, ableist, homophobic, etc. is not a valid justification -- because vulnerable people are hurt the most by such acts.

Now I am seeing people talking about how “stupid” (or, worse, how R-word) Trump is. This is unacceptable. Do not use intellectually disabled people as a verbal weapon. People are also rushing to declare Trump “mentally ill.” It is also not acceptable to sacrifice our community members with psychiatric disabilities in your hurry to insult Donald Trump.

I went to an anti-Trump protest last Friday night, and none of the signs talked about his ableism. None of the chants mentioned his ableism. We people with disabilities were invisible to the protestors. The only people I see still talking about Trump’s danger to disabled people are usually disabled people. We have been left out in the cold.

As Benjamin Franklin famously said, upon the signing of the Declaration of Independence, “We must, indeed, all hang together, or assuredly we shall all hang separately.” The slogan that unites those in opposition to Trump and the ignorance and hatred he stands for is “Love Trumps Hate.” I would suggest that we put that slogan into action: Factions of hatred are rallying around a powerful leader right now; we must counter by rallying around our most disenfranchised, most vulnerable members.

We must remember to always center those who have the most to lose from Trump’s leadership -- the impoverished who will die without health coverage, Autistics who face having crucial assistance stripped from them, People of Color, LGBTQIA+ people, Muslims, Jews, and more -- in our movement. We must leave no vulnerable person unprotected and unrepresented in our quest for justice. If we do not seek justice for all, we will secure justice for none.

We absolutely must unite. We must continue to remind others who are against all the other threats against the fundamental human rights of women, gender and sexual minorities, People of Color, members of various religious groups, and more that we are part of the team. We must remain sensitive and compassionate toward all the other groups of vulnerable people who are now poised to go through a metaphorical meat grinder. We must stand together against all injustice and we must all fight for each other’s right to live and thrive. It is the only way forward.

We know what happens if we do not fight against the threat of authoritarian dictatorship: history’s lessons have taught us about the concentration camps. More specifically, for those of us who are Autistic or have loved ones who are Autistic, we cannot forget the lessons of Hitler’s “trial run” of the death camps: the Aktion T4 Program. Yes, love truly does trump hate. But love can only be victorious if we enter battle with the cry, “never again!” in our hearts and on our tongues.

Monday, November 21, 2016

Autistic Insights on Meltdowns, Aggression, and Self-Injury

Brent White and Lindsey Anderson
Ala Costa Transition Program

A Presentation at Support For Families in San Francisco, California, which also included Dr. Clarissa Kripke's presentation Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices.

Lindsey Anderson, Brent White, and Nora
[image: white woman with long straight brown hair,
in front of a white man with a black cap, glasses,
and a silver beard, holding a small white dog]
Brent: The Ala Costa Transition Program, which serves students ages 18-22 with developmental disabilities, is 100% community based. We understand that when “behaviors” happen in public, sometimes really big ones, it adds a whole different layer. We want to be really careful in how we think about those scenarios. So we came up with guidelines that we use in our program, and that hopefully you can think about while an autistic person is overwhelmed and having trouble coping.

It’s important to remember that when someone is struggling, they are not being “bad” or trying to do something to you personally -- even though it can feel like that, especially if they’re screaming at you or making you angry.

By the time “behavior” happens, it’s too late to stop or redirect. So you want to be kind to the person who’s having trouble, even if it’s hard, and can be super scary for you. Be empathetic: it’s about them. Even if it happens in the community, and even if you have all these community members telling you what to do, and saying “that shouldn’t be happening.”

When someone is having a meltdown, they’re probably looking for a place to be safe, so they can stop feeling the way they’re feeling. As parents or staff, we want to get everyone else away. If there’s a crowd, we say, “Please go away, let us deal with it.” So if there’s a way for the person having a meltdown to choose a safe space, let them choose that.

It’s really hard on your own body, witnessing a person experiencing that much trauma. Especially if you’re in public, like in a grocery store or a Costco. That anxiety is hard on your body, and making decisions based on your anxiety can make things worse. So, if community members are gathering around and asking questions, that’s their problem. Your focus should be on the person in trouble.

While meltdowns are happening, that’s not the time to ask someone “what’s wrong with you,” chastise them, or ask them questions — that’s all useless. Again, be as empathetic as possible. Keep yourself as quiet as possible. Don’t shame them for their behavior. You can ask them questions afterwards. You can also praise them for how they emerged, and say things like “I love how you stopped and were able to get yourself away.”

You can also say, “When you’re feeling that way next time, here are some things that we can try….”

Lindsey: It’s just miserable for the person having the meltdown. When I’m anxious, it feels really terrible. And it feels terrible for the person, such as a parent, witnessing it too. So it’s really important to have an abundance of compassion for yourself, to take a big deep breath -- and to also know that the person experiencing the meltdown is feeling one hundredfold worse than you do at that moment. If you can be compassionate and loving towards yourself, then you can extend it to that person who needs your support.

Brent: If you’re in that situation, the more you try to be mindful, the more you’ll have a chance of handling the situation well. But let me also tell you a secret: Neurodivergent and other autistic people, in my experience, are really great at reading non-verbal cues -- so they will feed off your anxiety. That’s why it’s important to be mindful; to be quiet, calm, and kind. Even if you’re not saying anything, if you’re anxious, they’re feeling it.

Lindsey: We autistic people feel what you’re feeling, even if you’re not giving us those signals with your voice or face. We sense whatever you’re feeling in your heart and chest. (This is different from not noticing that people are picking up on us, and asking them out for dates!)

Brent: (Laughs) That is a completely different thing.

I’ve worked in this field for fifteen years. And there are a lot of little things that parents might not understand. We have participants who flap, and verbally stim, and walk on their toes -- and for some reason some people think of those things as “behaviors” -- and they are not. There’s nothing wrong with them -- that’s how they communicate, that’s how they interact with the world.

Lindsey: What a person is doing doesn’t have to make sense for the person not experiencing it. For instance, Brent is not using a microphone right now, but I am using one, and that’s OK. People need to be able to make their own choices, even if other people don’t understand or share their reasons for making them.

Brent: Actions that neurodivergent people engage in that other people consider odd aren’t always actually problematic. Someone “bouncing off the walls” may actually be engaging with their environment fully -- and that can be really beautiful.

Self-determination is important. People being able to choose their own coping strategies is really important, really empowering. They need to be able to make their own decisions about what they’re doing, feel like they have some control when they’re otherwise out of control.

But we will make suggestions, like “Do you want to go outside, do you want a drink of water, do you want to listen to some music?” We don't suggest them that quickly of course, but we’ll give lots and lots of choices. That way, when someone needs support, we can say “what choices do you have?” Even when we’ve had people having meltdowns that look really bad, they’re actually choosing their own safe space and way to do it. And after a few times, they really feel like they have agency and control. And that’s what’s most important.
 
Really, everyone here has probably had a meltdown of some sort, due to grief or just being a puddle -- it’s a terrible, terrible feeling, and it’s one I personally live in fear of. It’s really shameful to feel like you’re out of control. Giving control and agency can help, and knowing that lets me personally be in the world, instead of just wanting to hide.

Lindsey: Using these kinds of tools and approaches can reduce the amount of shame your child or the person you’re supporting experiences in the world. Shame plays a huge role in the way I personally experience my emotions, it’s something I’m overcoming -- I’m unlearning a lot of things that I learned as a child from society and from my parents and from the people around me. So if you can nip that in the bud, it can heal the community you’re around and it can also set your child up for success in the future.

Brent: When I was a kid and feeling overwhelmed, it was like being in the middle of a tornado of feelings. I would feel shitty, but I wouldn’t know why. I would go to my mom and ask for help -- and she would react by hitting me or shaming me.

Autistic kids sometimes need help understanding things about themselves and in making preferred choices -- I needed someone to ask me if I was hungry, or if I needed to go outside, and to recognize the things that usually upset me.

My mom didn’t recognize that I needed to eat. She thought I was having a temper tantrum. And that happened a lot when I was a kid because I simply didn’t have the context to put feelings to words to language and to be able to say to someone, “I’m hungry.” (And sometimes, I still don’t.) Autistic kids don’t always have the ability to match feelings or needs to language. Asking them questions can help.

It’s important to legitimize the feelings of autistic kids. There is nothing that feels as bad or as frustrating as having a thought or a feeling and not being able to express it. It may be the hardest thing about being neurodivergent. It’s a common problem.

Making friends can be really hard. It’s really hard for most autistic people. If kids are not responding to the friendship overtures of an autistic child, you can help the child understand that it may because of communication difficulties, and that’s not their fault. Focus on not shaming. And give them some time to respond.

And also make it sure that this is just something that’s happening, and that’s part of being aware of one’s disability: If your kids are autistic, tell them they’re autistic! There shouldn’t be any shame about that, either -- in fact, there’s power and knowledge in it, in knowing that it’s not your fault. That is one thing I wished my parents had told me.

These are some of the guidelines Ala Costa’s adult Programs use for working with Neurodivergent youth in the community

Brent: ACAT Ala Costa is a 3:1 program for young adults transitioning out of high school and into the community, which is all full of chaos -- it’s beautiful.

Lindsey: 3:1 means three students to one teacher.

Brent: Another thing to consider when working with people, or your kids, is the concept of “slowness.” Understand that Neurodivergent people process information differently and that processing time is different. So when you ask a question, wait as long as you possibly can for an answer -- until you’re bursting -- and then wait a little longer.

If you are not neurodivergent, the questions you are asking may make sense to you, but may make no sense to the neurodivergent person. I get that a lot. People ask me questions, and I’ll think about it a long time, I might start to panic. So you want to wait, and be patient. A really beautiful way to be in the world, with a disabled person, is to be super patient -- that’s so respectful.

Neurodivergent people process information differently, and they also process things that other people aren’t processing. If people noticed the sound of the lights in this [conference] room the way I noticed them, they wouldn’t have these lights at all. I am also hearing the sounds of the environmental system, probably a lot of other people in the room are not.

One of the biggest things: Presume Competence. Even if someone is doing something differently than you do, that doesn’t mean they’re doing it wrong. Everyone has their own way of doing things. The way Neurodivergent people get from A to B in the world is a lot different than the way neurotypical (NT) people do it. We don’t use the same systems and benchmarks. And it often results in amazing ways to adapt.

When I was growing up, I felt like neurotypical kids had all read the same script, and all knew what they were doing -- and I just didn’t understand any of it! I had to figure it all out in my own unique way; and not just one or two things, but every single aspect of my life. It’s a million little tiny things that you do in your life. Maybe if you’re neurotypical and you’ve read the script and you’ve figured it out, those things don’t matter to you, but probably for your kids, a lot of that stuff is not going to make sense.

When you’re talking about goals, and where people should be, think about how they’re adapting to the world, and really appreciate how they’re adapting to the world. And if you want to praise them for something, you can say “the way that you’re doing this is not the way I would do it -- but it’s amazing that you did it that way.”

It is really important not to say that results that are correct for that person are incorrect if they actually make sense! It’s especially important to presume competence in this way when it comes to testing, when the testers expect things to be done a certain way.

Lindsey: We also live in a world that doesn’t really like chaos because chaos means pain, and chaos means “too much, too much change.” But sometimes the way our brains work require chaos. We have to have that chaos -- and what may be chaos to other people are often beautiful and meaningful to us. And I think it can also be beautiful and meaningful to other people too! But we like to stick to rules in our society. And when we break those rules, we’re not trying to disrupt the system -- we’re trying to survive a system we’ve been put in that doesn’t give us the supports we need, so we have to create our own systems. No one gave anything to us; we had to figure it out ourselves. So respecting that process -- supporting and encouraging and appreciating those systems is so, so important.

Which leads us into the next topic: It’s OK to be different. I encourage it, I love it. Let that freak flag fly high! It’s the responsibility of rest of the world to adapt and deal with our differences -- we adapt to the world each day, and I don’t think it is too much to ask the world to meet us halfway.

If your child is stimming or even having a meltdown in public, and strangers are scowling at you, forget them. They are unimportant. This is our “normal.” We need to be positive in that way. And it’s not just the strangers; it can be grandparents, it can be family members: They want you to get that kid “under control” or “stop that screaming” or “stop being a brat!” People see differences in such negative terms, but we have the opportunity every day to reflect the joy of difference.

Brent: One of my adult clients laid down on the floor right in the middle of the tomato section at the Berkeley Bowl grocery store, because he needed a break. He was of course in the way of Berkeley people getting to their organic tomatoes! Our staff stood next to him so that no one tripped over him. They weren’t going to move him or touch him. The staff let the client do what he needed to do to feel safe. The shoppers got to experience that and interact with a situation. They got to be uncomfortable for 15 minutes and see that the world didn’t come to an end.

Shannon (moderator): My son loves the Monterey Bay Aquarium, and I consider it to be one of the most accommodating places in our area. One of his favorite things to do is to lie down on the floor and look up at the anchovies swirling around in their tank.


[video: close up of a school of anchovies
swimming in a cylindrical tank.]

I used get nervous, because typically in situations like that people will approach me in a concerned but patronizing way, and ask if we need help. But the Aquarium staff — they tend to approach and ask what’s going on. And when I told them, “He loves being able to do this. He’s so happy!,” their response was, “Well, we love it when our guests are happy.” And I was so shocked and grateful, and could only squeak out a “thank you!”

The more we’re out and just being ourselves and not hurting anybody, I think the more we can be comfortable being out and about.

Brent: I think that’s a great thing parents and caretakers can do too. It’s that idea of positive regard and how we reflect back to the world what’s going on. So if a kid’s lying down in the middle of the aquarium, and if his mom is beaming because that’s a beautiful thing, that makes such a difference.

One of the most controversial parts of our program is our belief that Neurodivergent people have a right to take risks! I’m not talking about dangerous risks. I’m talking about allowing people to learn by failing, and how important that is. Because that’s one way people learn, by failing. We all learn by failing. We all have the right to take risks and the right to fail. We all get to screw up; autistic people and their parents too.

It’s nonsense that you should know exactly what to do when your kid has a meltdown in Costco or the bank. You have a right to be confused, and do things the wrong way. That’s how we learn. This is especially important for Neurodivergent people who often have to find their own way through the world. Try, fail, then try again and again, until we figure it out.

In our adult programs, the right to fail is an important ethical component -- for me, for the staff, and for the participants. It also ties in with self-determination and self-advocacy. We can’t do anything unless we believe we can do it!

There is too much learned helplessness in Special Ed environments. You can’t learn to do something for yourself if no one ever lets you do that. Which means that others need to stand back, to let you do that. When people are allowed to fail and learn from their failures, it builds confidence. It builds belief in oneself. It’s not enough for anyone else to say, “Yes, I believe you can do it.”

Lindsey: Historically, disabled people are too often taught that they’re fragile and that they aren’t allowed to take risks because something might happen to them. So they never have the opportunity to learn from mistakes. With disabled people, it’s important to let us screw up. Let us go to the grocery store, try to buy something without money, and be told by the cashier that we can have the item because we need more money -- instead of doing it for us or giving it to us because we’re disabled.

I think about this a lot with my very visibly disabled clients and program participants. We go to the store nearly every day, and buy lunch as part of the program. Sometimes we’ll have a participant who really wants a piece of delicious pizza and a soda but they can only afford the pizza. So what happens then? That’s a time when they have to make the decision to buy something they can afford, because that lets us learn about money. That lets us learn that if we can’t get what we want, then we have to figure out something else. Because what are they doing to do when they are dealing with people besides parents and caregivers?

Brent: Independence means different things for different people, and I prefer to frame it as “less dependent.” Anyone can create situations and spaces where people can be less dependent. And for some people that might mean spending three minutes alone, for others that might mean living on their own.

Inclusion

Brent: Inclusion is usually constructed around the idea of the disabled person presenting as “normal” as possible. But I think inclusion is a two-way street, which means the neurotypical world needs to meet the neurodivergent world halfway. The world belongs to disabled people too, but we’re often excluded from it. We always have to force our way into it.

Inclusion should not mean invisibility. The historical narrative of disability says that we’re broken or diseased -- that there’s something wrong with us. People with intellectual or developmental disabilities are always being separated, whether by institutionalization or isolation. The only way to break that down is by all of us educating ourselves to counter that narrative.

I really want to see a world where when your kids get older, they won’t have to struggle to fit in the way I did. I want it to be just a little bit easier for them, and then a little bit easier for the next generation too.

Lindsey: Brent and I didn’t have people talking about this when we were younger. So it is really healing for us and really important to have this platform. But it’s also really important to have a wonderful audience like we do today -- one that is willing to listen, and willing to take this message back to their home, office, job, school and implement what we’re talking about so we don’t have to go through the same pain, generation after generation, of Neurodivergent people.

In terms of our own experiences as young people: Growing up, I always knew I was different, but I was never given an autism diagnosis even though people were always talking about my behaviors. As wonderful and loving as my parents were, everyone always thought I was throwing tantrums, that I was just angry, overly sensitive, and overly emotional.

Something I would have told them if I could have, and that I’m telling you now: It’s important to pay attention to what is going on in that moment of having a meltdown -- when we’re feeling really uncomfortable. It’s important to have compassion in that moment -- both for your child when they’re not feeling well, and for yourself. I’m not overly sensitive, I’m hypersensitive -- I was taking on both my own emotions and the emotions of everyone else in the room, and was incredibly aware of the way people acted around me because none of them acted like me. No one stimmed, or threw their hair around, or jumped around like I did -- so I modeled what everyone was doing around me, and I learned to keep all my really uncomfortable, painful feelings inside. For twenty-one years.

Now I have a community. I even learned I was autistic by talking with other autistic people. That self-knowledge has helped me understand coping mechanisms. I don’t have awful meltdowns anymore. And my anxious feelings, well they don’t really happen unless I have to speak in front of people!

Talking about how I feel is a huge deal, and that’s why I talk about my experience -- so people don’t have to go through what I went through. As an adult I am way more autistic than I’ve ever been, but also happier than I’ve ever been -- because I understand myself and have the supports and coping methods I need. Knowing my access and support needs allow me to support others in my community.

Brent: My experience is really similar. I started going to therapy in my 40s, and when they asked me to describe my childhood, I said I was always “scared,” because I didn’t understand what was going on around me.

That’s the thing about being autistic and undiagnosed -- it’s scary, because you know you’re different, but you don’t know why. What was really debilitating was being told everything I thought and felt was wrong. It’s a really scary feeling. It’s like you don’t exist. And I didn’t understand how I existed as a human being, because I wasn’t like anyone else. I didn’t relate to anyone, because there was no one who was like me. Sometimes I felt like I was either invisible or on a ten-second delay from the rest of the world. Especially having thoughts and feelings that I couldn’t express because I don’t think in words. The world is a connected and beautiful place that was in the front of my vision the whole time, yet I couldn’t communicate that.

So I went through a lot of therapy and got a lot of misdiagnoses but wasn’t OK until I discovered the autism community.

Now I have a community, I know people who are like me. It took me fifty-something years to get here, but I’m here. And the reason I come out here and do talks like this that make me uncomfortable is because I want that for other people: I don’t want anyone to spend their life feeling confused and depressed, invisible and misunderstood, because they can’t connect with people. I connect with people really well, it turns out -- with neurodiverse people. Sitting in a room with other disabled people is a really great experience. It is happiness.

Lindsey: You need to find your community. If you can’t find someone who lives next to you, then go online. That doesn’t mean you have to like everybody, or listen to all of them, or that you’ll agree with everything everyone says -- but it’s out there. Keep searching. Because community is the most powerful thing you’ll find. It is more powerful than any education or anything else that will happen with your child. Community is key: for them and for you.

Shannon: To follow up on Lindsey’s emphasis on community: there are some really great spaces online, like the Thinking Person’s Guide to Autism Facebook Page, which has autistic people, parents, and professionals. It’s an information sharing community where you can meet people very much like yourselves. It's at: www.facebook.com/thinkingpersonsguidetoautism.

Also: something we come across a lot at Thinking Person’s Guide to Autism is parents telling autistic people like Brent and Lindsey that their personal experience as someone who can speak, and describe what they’re feeling, is different from their own child who can’t communicate the same way. But I am telling you that what Lindsey and Brent are describing is probably what your child is like, even if they’re not able to communicate that in a way that makes sense to you.

My own autistic son is a teenager, and our life together hase become so, so much happier and easier due to learning from autistic people what being autistic is like. Because if my son is not happy, then I am not happy -- and I’m sure that’s an experience shared by many people in this room. So understanding what Brent and Lindsey have been saying, about what it’s like to be autistic and what makes my son happy; the things that our other speaker Dr. Clarissa Kripke said about what it’s like to have serious medical conditions that are not identified, what it’s like to have sensory sensitivities in an sensory-unfriendly world when you can’t filter it on your own, all that.

So I’d urge caution in insisting that autistic people who can express their thoughts and feelings in a more typical fashion are not like your child -- because truly, they are like your child, but they have different abilities.

Lindsey and Brent can’t speak for your child because they are individuals. Trust me, there is as much personality difference in the autistic community as there is in any other community: Some people are great, some people are friendly and helpful, and happy to answer your questions, and … some people are not, and might tell you that you’re a jerk just by virtue of being a parent. So you need to seek out people and communities and spaces that will support you, and it is completely fine to reject a space in which you do not feel supported.

The shame that Brent and Lindsey talked about, you should not let any of that permeate your approach to parenting your children. You should try to find people who are trying to understand you, your needs, and who embody what Lindsey said about having compassion. We are looking at providing the best quality of life possible for the people we care about, the people that we work for, and ourselves. We have rights, and we should be able to exist in this world as ourselves without being ashamed of who we are.

Post-Talk Q&A

Parent Q: How do we support our children when they are having a public meltdown?

Autistic Q: How can we deal in the moment, like if we are having a meltdown in a medical office, and the response is to threaten to call security?

Lindsey: When we are having a hard time, it’s not our job to educate other people in that moment when we have so many other things going on. Maybe after the fact, you can come up with strategies for next time — or if it’s your child, talk to them about strategies they can use next time like a gesture for “please go away,” or “I don’t need help.” But interference in that moment is the last thing that you want because an autistic person is usually in the middle of processing what’s going on. Nothing’s probably going to stop it, and nothing’s going to make it pretty.

Brent: If I’m in charge of a situation in which other people might be unsafe, I am very strict about chasing those people off, to ensure my person’s privacy. I don’t care if it’s in the middle of Costco or a drugstore. That person deserves to have their privacy respected.

Lindsey: It’s not your job to educate people! Parent responsibilities are to yourself and to your child — not to other people in that moment.

Shannon: My son has recently learned to say “Stop, please.” And he uses it appropriately. It took a while for him to learn it, a lot of repetition, because he wasn’t ready before then. So just because teaching certain self-advocacy skills might not sink in immediately, that doesn’t mean they won’t sink in eventually. And even if they don’t use the skills, they do get internalized, and your kids will know you’re trying to help them, that you have their back.

Audience Q: What are some coping skills you recommend?

Lindsey. My coping strategies evolve every day. I use
  • Meditation
  • Having a quiet space.
  • Working out every day, weighted resistance helps connect my brain to my body, and process -- in general, and so I can be aware of and process energy from interactions
  • Being aware of triggers, and topics/encounters that will be energy sinks. I can’t avoid the outside world.
  • Allowing myself to listen to me! I am the expert of my body. No one is going to write the handbook for me but me
Brent and Lindsey: We also have service support dogs. Lindsey’s has been trained to provide compression as needed.

Audience Q: What causes meltdowns?

Lindsey: Sometimes meltdowns and self-injurious behaviors (SIBs) are not the terrible things they seem to be. Sometimes people just need to cry and be super upset, and that’s a way of processing. I actually usually feel better afterward. That should be OK. I don’t need to analyze why I’m doing it.

Brent: I experienced cortisol as electric currents under my skin, and needing to release it. This could  lead to serious SIBs, and it looked horrible and painful, but it was actually therapeutic.

Dr. Kripke: Data shows that mindfulness-based stress reduction techniques work for both autistic people and people with intellectual disability. Flight-or-fight meltdowns are often based on that cortisol hormone surge. People can learn techniques so that when you get that surge, and it’s not reinforced, meltdown can only last 10 - 90 seconds, instead of three hours. The goal is not to prevent the surge, but learn techniques for not reinforcing and perpetuating the surges: to focus on de-escalation, rather than escalation.

Audience Q: I wanted to ask about non-physical self-injury -- specifically for girls and women, as we’re socialized to be seen and not heard, to not make waves, to not disrupt. When we are doing things that are considered wrong -- or don’t feel right -- for me, I was so afraid for anyone to see that I was self-injurious that it all went internal. So I think that a lot of girls and women -- but also men -- injure themselves internally, and I wanted to ask if that’s part of self-injury. Because all of my meltdowns tended to come from internal stuff, not external stuff.

Brent: We talked a lot about shaming and the result terrible results of shaming, when it happens over and over again. It builds up in your head. It feels like everything you do is “wrong,” It leaves deep psychic scars. I don’t know any autistic adults who don’t feel that way.

Lindsey: I never knew that I was autistic, because I’m a woman and I’m expected to have certain characteristics I was always very aware of the way other people were acting and if “that’s not the way girls act” -- I internalized all of that. If I wasn’t acting out (having a physical meltdown), something I would never let anyone besides my family see because I was so incredibly self-conscious, then I would absolutely go internal with it. I’m still dealing with that and realizing and un-learning all of the self-harm that I would internalize from living in a world that doesn’t like the way I am naturally.