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

Maxfield Sparrow
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

Maxfield Sparrow
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.