Saturday, November 8, 2014
Your child reciprocates your affection.
Feels. Feels affection.
Look for more than words. Look for more than responding to hugs. That can be so much sensory input for your child that they can't respond.
Don't look only for things you would do.
Don't look only for things that look exactly like your expression of love.
Look for more than words.
Look for love.
Tuesday, September 16, 2014
Earlier in the year, I was contacted by Maggie Danhakl from Healthline asking if I would be willing to take a guest post from them. Over the next few months, Maggie and I exchanged emails. We decided on a practical topic that many Autistic people might benefit from.
During this process of exchanging emails, we talked about language and cognitive accessibility, putting identity first and avoiding pathologizing language. Maggie and Adrienne were refreshingly willing to work with me to create a piece tailored to Autistic readers. I am so thankful to them for their time, effort... and patience! When sending me the final draft, Maggie said, "I've done my best to review it through the lens of my friend who has Asperger's. He has taught me a lot about communicating, spoons, and being very literal."
I am proud to present to you my first guest blog, Healthy Living Advice for People with Autism, by Adrienne Santos.
Healthy Living Advice for People with Autism
Physical Activity and Autism
WARNING: Autism Speaks is cited as a source below. Because I had already taken up enough of the Healthline staff's time asking for edits, and because the information itself is not objectionable, I did not ask them to go out of their way to find another source. However, I do not endorse Autism Speaks in any way and I do not encourage anyone to use them as a source. I have removed the hyperlinks to Speaks' site.
Tuesday, August 5, 2014
This post was made on Facebook not long ago by a very popular page. It is an image of a tweet from someone who calls themselves "God." (the idea behind this is to make common-sense statements about humanity and how it keeps mistreating its members and making terrible choices as a species.)
The text reads "Some people think autism is a disease that needs a cure. It's not. Autistic people don't need to be cured, they need to be accepted."
Of course, the comments that followed were all about "My nonverbal son who has a low IQ and needs constant care because he blah blah blah and the kids I work with are lower functioning than the self-advocates who say that they are just different and blah blah blah real autistic people don't have a good quality of life and they're aggressive and they are unable to blah blah everything because they can't anything..."
...and lots of other dismissive, deficit-themed things that completely insult the way many Autistic people live, with many needs and struggles, some of them embarrassing, none of them shameful but all of them being used to dehumanize my fellow Autistics into incompetent, helpless tragedies (people are not tragedies. they are people.) But I'm getting a little ahead of myself. You'll get to read my rant a little further down the page here.
One woman named Mia even wrote "Dear God, my son is autistic. He cannot talk. He will never in this life have full use of his intellect because he is now too old to develop language skills."
Tell that to Carly, who didn't even begin typing to communicate until she was like 12 and now she's going to college independently. Oh, and Emma, who I think was even older when she started typing to communicate and who's that going to college? --oh, that would be Emma.
Of course, these comments have managed to make me feel hopeless, helpless, anxious, and frustrated. They make me want to cry or panic. They make my brain scramble for the words to be understood but my brain is so anxious that I cannot grasp all the whirling thoughts with my chest so tight and my brain constricting. Instead of thinking too much about the negative comments, or getting drawn up into an ill-fated argument with each and every commenter like I am unfortunately prone to doing... I opened up a comment box and I let loose with every passionate thought that I had and explained, as neatly as I could, exactly what my opinion is of people who talk about my friends as though they are hollow sacks of not-person who got stolen and replaced by bad terribleness.
The final product is as follows.
Okay, guys. Rally.
1 Amy's essays:
It is About Respect
Non-speaking Autistic Activist Responds to Suzanne Wright of Autism Speaks
We Are All Part of One Spectrum
The Presumption of Competence
I Feel Tired
A Message to Suzanne Wright
My Friends Are the Real Thing
Monday, July 14, 2014
A sign. A street.
The sign hangs crooked, bent over with age. The green paint fades into the white letters. Nobody knows what it used to say. Three-foot-three, she drums her fingers repetitively against the steel.
Her hands slump from the sign without a word. Not that she has any words to slump with.
There are no words on this street anymore.
Her tip-toes toe what was once a hopscotch board, now a faded, dusty frame. She scratches the sores under her shirt, puckered "o's" where the electrodes were stuck.
On the left. three fat steps descend to the sidewalk. The paint on the door is faded. The sign above the door reads "A Hopeful Place." She can read the sign. Everybody thinks she can't.
Lots of places like this have moved in on the street. Some of them have classes where kids get held down until they look into a pair of eyes, or where their hands are shoved into painful things like paint and water. Where a gummy bear means a positive behavior. Where you get drilled on the same things over and over because your body does not report what you know.
Some of them are clinics where children are fed pungent solutions, some that leave them with debilitating pain. They have tubes put in their arms. Sometimes the kids come out with their faces covered in a sheet, their bodies not moving anymore. Inside A Hopeful Place, there are tables and chairs with straps on them. When she was inside this building, she was strapped to a table and burned by the electrodes that they stuck to her body to make her learn. Because the street is a place of learning.
She has made rapid progress since she walked through those doors.
She no longer talks like herself. She talks like the other kids on the street now. Crisp, clear sentences, full sentences, pronouns. Without repetition, without free-form cadence. With her mouth, not her hands. But her words don't mean anything anymore. They're just a script, a routine that she's learned to act out. This is how she survives the street.
She no longer moves like herself. She moves, like every other child, in predictable gestures, straight lines up and down her arms and legs and back. She moves with quiet hands. She moves pieces of herself as far away as she can. She locks them out. This is how she...
She no longer gazes at the trickle of a faucet. She no longer stares at the creases of her hands. At the glint of a bracelet. Now, she cements her gaze onto pairs of eyes, lets them invade her, tries to understand their speech sounds while the eyes and their emotion commotion fill her head with static. She can never remember their words, but the eyes are all that matter on the street. She doesn't remember the A's, B's, and C's that they recite while she is staring into their eyes.
She can recall the words they used to say around her. "Independent " (she will never be.) "Intelligence" (there are no signs of.) "Functioning" (she is low.) "Career" (she will never have.) "Comprehend" (she does not.) "Severe." "Finances." "Divorce." "Competence." "Behavior." "Manipulative." "Willful." "Failed." "Fault." "Suicide." "Depressed." "Give up." "Lost." "Stolen." "Missing." "Empty."
"Hope" (that she will become something they can be proud of.)
The words she hears now threaten to put her in past tense. Relegate her to an Autistic yesterday. "Recovering." "Progress." "Healing." "Improving." "Indistinguishable." "Typical." "Reduced." "Acquired." "Reclaimed."
She has walked through the faded doors. She has stepped back onto the street, subjugated, jaded into compliance. She has been trained to subdue herself. The shocks cease when she learns to suppress what comes naturally. Her song that is not good enough for anyone else to accept.
She does as she was trained to do. She does it so well. So she is released to the kindness of the street.
The kids on the street accept her now, because they look past what she struggles with. They do not look at what she struggles with. They do not look at her. They pretend that she is someone who they can accept, someone who is just like them.
It's okay to like her because she is just like us. Elmo told them so. Elmo told them that she was just like them. Big Bird told them that there was hope for her. Grover told them that she could get better if she got special help.
Special help from those sun-bleached brick buildings. Special help from A Hopeful Place.
She does not want any more special help from those faded doors and those big, blocky steps. The colorful signs that hang from the bricks, advertising hope.
With her quiet hands brushing the fabric of her skirt, she watches her feet step-by-step-by-step down the cracked sidewalk, her shoes sending tiny rocks skittering with each step. She drags her heavy legs sadly past Mr. Hooper's empty store, past a cracked and sagging doorpost that has seen too many sunny days, bone-white and splintering off in pieces.
All the color has washed out of everything on the street. A long time ago, people here used to celebrate all the different colors that make the world so wonderful. Now, the people's claims of tolerance and diversity have ceased to have meaning to the children of the street.
Now, everything is faded.
The once-sweet air blows loose and swirling dust through the store's open windows. Friendly neighbors' doors are all closed, and windows are boarded up. Fear of life's vibrant color locks the friendly neighbors captive inside. Nobody wants to meet where the color is brilliant and the doors open wide to children's minds. Instead, clouds obscure the many shades.
Clouds cast everyone in uniform gray.
Puzzle pieces adorn the street. They drain away all the colors of the children, leaving only dust and splintering boards.
This is a pretend-nice place.
A brightly colored top in a patch of grass distracts the eye from the listless uniformity of the people. Even the chalk-rainbow on the next sidewalk square has been washed away.
Ernie slouches his way down the opposite sidewalk, a watery half-smile sitting atop his chin. He lifts one hand kindly, but his shoulders droop under the heavy clouds that cannot be chased away. Cracked sidewalk rises to carry his feet through the quiet. Rust reaches out to him from broken pipes, trying to stain him with surrender.
This is the street. The street is broken. For Autistics, it will always be. Broken. Because this is what Sesame Street has said to us.
You can be fixed. You can be just like your friends. We can help you. You are welcome on our street... if you learn to be someone else.
A sign hangs crooked in the background. It once said "Sesame."
A hopscotch board, with no numbers, only labels.
This is the street.
It is broken.
Monday, April 28, 2014
Do not tell a Disabled person that they should not consider their Disability in thought, integrate their Disability into their identity or let it define them.
The truth: a person's relationship with their Disability is complex and complicated and very personal. It is for that person alone to direct and experience. Like any relationship, it may not be all good or all bad, but it is constant, and forcing them to ignore it is like forcing them to ignore their gender or their cultural background.
I do not pretend that my Disability is not there or that it does not affect me in concrete ways.
I do not look past my Autism or do things despite my Autism, and I don't treat my personhood as separate from and ahead of my Autism, because Autism is a part of my personhood.
I embrace all of myself, with all the unique challenges that I face, strengths that I have and idiosyncratic neurological processes that I experience as an Autistic.
I am a person. I am simultaneously an Autistic. I am an Autistic person.
Unlike and like any other person. Both alike and disalike to any other Autistic.
Just as Maya Angelou is hailed as an independent and powerful woman, I regard and welcome myself as a confident and powerful Autistic.
You could attempt to define my personhood without saying "Autism." You could describe me as intelligent, gentle, talkative and strong-willed...
...and you would still be describing me as Autistic.
You could describe me as kind, forgiving, forgetful, naive, loyal, impatient and creative.
And you would still be describing me as Autistic.
I recently had a teacher warn me not to become a "victim" of my Disability. This is my answer to that myopic but well-intentioned trope:
I am not a victim of my Disability.
My Disability is a friend of mine.
Thursday, April 3, 2014
I posted this on Facebook last month at Facebook.com/AutisticChick
Now I am posting it as a blog.
In this post, I address three common myths. I have attempted to make this post succinct, comprehensive and simple to understand.
There should be no validity assigned to the ableist assumptions that Aspie voices are not real/valid Autistic voices, or that FC is not real/valid typing.
However, since these views are so widely held and seem to be a barrier to people assigning any validity to the neurodiversity perspective, let me address a few misconceptions about the neurodiversity movement.
1. "All self-advocates and neurodiversity advocates have Aspergers or HFA, or are verbal or independent."
The fact that "independence" and "functioning level" are vague, nonlinear and subjective aside, this is not true. There are a number of neurodiversity advocates who are nonverbal/nonspeaking or who have been labelled low-functioning.
2. "All nonverbal neurodiversity advocates use FC."
Again, this is not true. Henry Miles Frost, Emma Zurcher Long and Emma Studer are three examples of nonverbal/low verbal Autistic people who are able to type independently or using methods other than FC.
3. "FC is the facilitator speaking, not the nonverbal person."
Here is a link to an interview with Amy Sequenzia that addresses this. I recommend that you read it all the way through.http://www.thinkingautismguide.com/2012/11/interview-amy-sequenzia-on-facilitated.html
Now. That being said.
Stop invalidating our voices.
Thursday, January 23, 2014
I left the gym, I had to, because the music made me uncomfortable. I stood by the door.
I saw an apraxic struggle. I saw a nonverbal student being pushed through a door in a frenzy of movement, everyone shouting at the same time, bent over with hands thrusting at his back, pushing against the doorframe and struggling to stay upright. I saw too much, too much.
I saw a blur of movement and sounds coming at me from every direction, I saw the ceiling the doorframe the floor somebody's hands everyone shouting. I saw the final thrust through the door, met with bright lights and cheering, everyone applauding the nice save!
I saw dizzy and disoriented.
I saw what he saw.
I saw a classmate who couldn't respond to prompts because they were coming too fast, and who couldn't comply because everything was being thrown at him at once.
They saw defiance. Headbanging behavior. A tantrum.
I saw a student trying to block out external input. I saw. Everyone else gawked and chattered as the other kids did the warm-ups. I stood by helplessly.
I saw a humiliated man sitting against a wall in a corner, helpless and outnumbered, with no way to communicate.
I saw what he saw, the flash of students flying all around me and I saw people surrounding me, cheering, cheering for the aide as though it was some big victory to drag a student back into a classroom. I saw the world whirling around my head and it hitting the wall just to drown out the noise.
I saw that nobody was asking themselves how he might feel. I didn't just see the defeat, though, the lack of dignity or respect; I saw humiliation. Oh, yes, I saw. Pain.
I watched in horror. I felt for him. I felt with him. An aide, concerned that I had left, asked me if I was ok. Then she smiled at me knowingly. Chuckled, "He's having a little fit."
No. That's not what I saw.
I saw an overwhelmed student trying to escape a hostile environment. An attempt to find a safe place, or a bathroom, or some water.
I saw a hasty and disjointed "rescue" that fried his emotions and ability to think. I saw visual, auditory, vestibular and tactile input slam him like a truck. I saw vestibular upheaval, and I saw desperation and fear and frustration because nobody understood, not one of them.
They saw a fit.
They didn't see what I saw.
We stayed that way for about a minute. The bus rumbled down the street, curving around the corners, my hand in his.
They said I helped calm him down.Sometimes people underestimate what it means to acknowledge someone's humanity. To see it. I don't know what they thought my gesture was, but we knew what it was. A show of solidarity. A quiet one, not a trumpeting fanfare, but a whisper. I know.