This is Autism (Bridget Allen)

Written by Bridget Allen 

Originally posted at It’s Bridget’s Word

What follows is my contribution to the This is Autism flash blog, where many wonderful people have pieces that bring to life the beauty of divergent neurology. They are positive and glorious and you will be enriched by reading them.

However, bear with me while I am slightly less sunny. I am recovering from a couple of weeks of trying to be a part of the world and getting smacked down with one access fail after another. I am cranky.

Suzanne Wright is the co-founder of Autism Speaks along with her husband Bob. Last week, she wrote a vile fear mongering piece of hate speech, which is not shocking because fear and demonization is Autism Speaks bread and butter. They have used fear and money to build an empire bent on wiping autistic people out of existence. What shocked me was that this piece struck a nerve with so many people who had overlooked Autism Every Day and I am Autism. She explained that autism is living in fear. In that we agree, but while her fear is of naked hopping autistic refrigerator raiders making parents lives dreadfully inconvenient, my fear is of people, fueled by the rhetoric of the Wrights and others of their ilk, who want me dead.

Ms. Wright, This is Autism, the Autism you helped create.

This is Autism: Autism is having to work too hard.

The cultural pressure to pass is so intense, my failed attempts sneak up on me. Being natural or relaxed in public is impossible. While I’m a few generations too old to have been subjected to ABA therapy, the ABA paradigm colors how the world views us. Indistinguishable is good. Anything else is dangerous.

This is Autism: Autism is having needs treated as preferences.

Recently, I was to be involved in a project, about which I was very excited, designed to further the empowerment of individuals with developmental disabilities, but my statement of access needs, in writing, through proper channels, was ignored. I was not warned ahead of time that the environment would contain the very seizure triggers I specifically mentioned in my registration. I tried to tough it out, but after three seizures (not counting absence seizures) in less than two days, I had to admit defeat.

 Understand, I was dealing with people who are professionals in the field of developmental disability. These are the people who should already get it. By no means is a seizure disorder autism, but I do not doubt that my autism is why my needs were not taken seriously. It has happened too many times to be a coincidence. Autistic needs are viewed as wants, then labeled Behaviors. We are expected to control those Behaviors, or have them trained out of us.

This is Autism: Autism is having to explain myself over and over when explaining is the hardest thing to do.

When I use verbal speech to communicate, understand I am meeting you considerably more than halfway. I am expending energy that takes away from my responsibilities and loved ones. My reserves are not unlimited. If I then have to explain the same thing over and over again because it “doesn’t make sense” to you when I “look normal” or because you “know this other individual with autism who does that just fine” you insult me.* If you cannot give me enough time to form words without talking over me and (incorrectly) finishing my thoughts, you are disrespectful.
*actual quotes

This is Autism: Autism is knowing no matter what, the majority of people I encounter will always view me as a little less than fully human. That is your legacy, Ms. Wright. In eight short years, you changed the dialogue surrounding autism.

That is powerful, and impressive, and so very wrong.

A Glimpse Into His World

Written by Genevieve Elias

Originally Posted on Coloring Outside the Lines

This week has seen a flurry in the Autism community in response to a piece written by Suzanne Wright on Monday November 11, 2013 - the eve before an Autism Summit in Washington D.C.  It got me thinking about the past seven years as I have experienced parenting a child on the spectrum.  After a week of introspection this is what I have come up with:

My son is a study in contradictions.

He loves to snuggle, give people (even random strangers) hugs, and is constantly touching anyone within his sphere.  However, you need permission to be in his bubble, he has to be in a mood for us to give him hugs, he hates having his head touched, and don't even try giving him a massage - they hurt.  BUT, he sleeps under a ton of blankets, loves to be squished between bean bags, and swing or rock.  

He struggles with receptive and expressive language, yet his facial expressions speak a thousand words.  Although he is fully verbal and for the most part can tell us what he wants there are times when he talk in circles and his conversations don't make sense.  Other times he busts out with a song like  "Onomatopoeia" out of the blue and will then sit for what feels like an eternity as I show him videos with examples of figurative speech.  (He must be learning about Onomatopoeia at school today, it was a phrase that came up quite often before he headed for bed.).

He loves to watch "My Little Pony", "Sophia the First" "Thomas the Train" and "Chitty Chitty Bang Bang" but not if they are too scary.  then again, it doesn't bother him to pretend to play zombies, or shooting games no matter how many times they have been banned at our house.

He will spend hours playing with his trains, building tunnels, drawing pictures of amusement parks, trains, planes and automobiles.  However getting him to sit for fifteen minutes and do a math page is like pulling teeth - unless you use manipulatives, then maybe you can get him to sit for twenty minutes (more like stand, or swivel on a wheelie chair).

His normal talking  voice is what everyone else uses as an outside voice, yet his sisters sweet little voice often sends him into tears of frustration as he screams "You're hurting my ears."   

He is afraid of jungle gyms with bridges, but adores fast roller coasters and monkey bars.

The first way you do something with him is usually how he wants to do it for the next million years, and if you change things you have to let him know ahead of time and predict with him about what things will look like.  On the other hand he loves to be in complete control of his environment and even though he knows the routine at school he will negotiate every last task.  His teachers are learning that not negotiating with him is an exercise in futility.

My son faces an obstacle course each day.  Each day the path changes.  Some days are easier than others.  I know that what my son struggles with is no where near the struggles of other children facing the challenges of more severe autism, but in our family's situation I have to disagree with Suzanne Wright.

My family lives!  We live moment to moment sometimes - and other times our lives are very scripted and routine-istic.  I don't live in despair, but I do have some fears for the future (I don't think I would be a mother if I didn't).  As a mother I do have my good days, and bad days.  I also have them as a wife, a friend, a sister, a daughter.  Some days I am emotionally, physically and mentally depleted - but so is every other human being on the planet.  We all have bad days, and to be honest I think we have more good days then bad.

Yes, I still have to buy pull-ups - and he still has to have an extra pair of clothes at school - but you know what that is okay, and each time he has an accident we quietly move on and we don't make a big deal.  HE MAKES a big deal when he realizes that he had a dry night.  We let him lead, we will follow.  

No, we can't afford those costly trips to the doctor that specializes in autism, and we worry about how we can afford the occupational therapy that he needs for sensory regulation, thank goodness he gets speech therapy at school and that there are programs out there like Touchpoint Autism Services that provide ABA therapy for my kiddo (and give me some great strategies). Yes, we have been on waiting lists for things - but it teaches us patience.  I wish our insurance paid for everything - but they don't pay for everything that I need for my own physical ailments.  This week I will be attending another IEP meeting to fight tooth and nail for my son to get the services that he needs.  If he doesn't get what I feel he needs, than I will continue to advocate for change and supplement what he isn't getting at school at home.  (One of the blessing my kiddo has from having a reading teacher as a mommy.

The other day my husband and I had a heart to heart talk.  He said "Let's face it, we need help."  We need emotional support.  We need to be in a better financial place (but that is driven just as much by the economy as it is driven by the cost of supporting our son), and I would love for my son to have better access to therapy.

Most importantly my son is not lost.  He may sometimes appear to be lost in his own little world at times, but he is slowly letting us in, and catching glimpses of his world is miraculous.  I'd like to live in his world more often, to be perfectly honest.  I have Specific Learning Disorder.  It took me a long time to learn how to read, and I needed someone to show me unique ways of processing information.  I'm grateful for learning how to overcome my struggles.  When I look at my son I wish that he didn't have moments that completely debilitate him emotionally, I wish I could make things easier for him - but then I am reminded that through our struggles and weaknesses we become stronger.  That is even more so in regards to my son.  For every debilitating factor he struggles with there is so much more weighing on the positive side.  

This is my autism

Written by Joanne Limburg

This is my autism: when I research a subject, I RESEARCH it.

This is Autism (by Lief O'Neill age 10)

Written by Lief O'Neill

This was written by Lief O'Neill, a ten year old autistic boy who types to communicate.  Lief recently became one of the first, non-speaking autistic people to receive a heart transplant. Receiving cutting edge life-saving medicine is the ultimate affirmation that an autistic life is worth living, worth saving and that our son is fully human and deserving of life and respect.  He fought hard to save his own life and we are proud of him.  He is a self-advocate from his first typed sentences and he was very happy to participate in this flashblog.

This is what he had to say today.

 

"Autism is actual many different ways of being.  Some people think it is a disease but it is a way of being. We are learning how we are special.  Autistic kids are good. Autistic kids are smart and can get transplants. See me as smart."

This is autism flash blog - Monday, 18 November 2013

Written by and originally posted at Cosmic Autist


I Am Autistic.

Being autistic in my world means forgetting how to make friends in the seventh grade.

It means sleeping in the living room during the winter because the sound of the thermostat is so irritating.

It means falling in love with a topic.

It means being overjoyed when you FINALLY find the story of someone who THINKS LIKE YOU and becoming an expert on this new idol of yours.

It means being jealous of your neurotypical little sister because she doesn’t have to go to what you call “optional therapy”.

It means telling your mother for the next decade that sending you to said therapy was a waste of her money.

It means feeling attacked when someone you admire is attacked.

It means trying to go vegetarian at age ten or so and having your parents think you were just being a “picky eater” like usual.

It means not knowing how to explain that you didn’t eat dinner yesterday even though you were hungry, because you can’t stand the texture of baked potato skin.

It means dreading December during high school because everyone was required to participate in Secret Santa and make our gifts ourselves, and you never have a clue what to make for your person.

It means understanding your cat’s body language better than you understand your sister’s.

It means not knowing how to flirt with a guy until college despite desperately wanting a boyfriend since tenth grade.

It means forgetting to eat lunch because you were so busy reading about synesthesia.

It means having a meltdown in sixth grade because your teacher thinks she can force you to get along with the girl who picks on you.

It means appreciating your elementary school PE teacher long after elementary school for picking the teams himself during class so people like you wouldn’t get picked last.

It means never having stage fright or test anxiety but being terrified to drive or cook.

It means grieving your Pokemon Crystal game after twelve years when the battery finally dies.

It means waffling about whether you should tell the rest of your improvisational acting class that you are autistic.

It means secretly copyediting Wikipedia at the age of sixteen.

It means playing the same minigames on Microsoft Encarta every time you used it as a kid.

It means playing your sister’s copy of JumpStart Second Grade years after you finished second grade yourself.

This is me.

This is autism.

Your mileage may vary. It probably will.

But autism is not the enemy. Ableism is the enemy.

Cure ableism.

Cure epilepsy.

Don’t cure us. We won’t let it happen.

This Is Autism. An interview with 9-year old Bean.

Written by and originally published at Deceivingly Normal

I decided to ask Bean what Autism is in the spirit of the AutismFlashBlog going on (check it out).

This is how it went down:

>Bean, do you know what Autism is?

I don’t know
And I don’t really care.

I don’t know about Autism and Asperger’s.

>Do you think Autism is good, or bad, or just a thing that is.

I don’t know if it is good or bad. I really don’t know actually. It is just me.

>Asperger’s is a type of Autism and Asperger’s basically means that you think differently than others. That you may see things differently and feel things differently. Perhaps when someone looks at a car they just see a car. But when you look at a car you see the patterns on the license plate, or the colours in it and a scratch that nobody else notices. Sometimes you might be overwhelmed because you notice too much, too many sounds, too much light. But it is your ability to really see things that helps you to see things others sometimes miss. And because you like to really know things about things you like, and you learn all about them and never get tired or learning about it or practicing, you become a specialist in things. And that is really cool!

I see your eyes and your nose and your blond hair and your shirt, with the lines in it. Scritchy. And the wall with its lightish colour and the spots on it.

>Sometimes it can be challenging to be autistic. To think differently and have people not understand the things you do.

I don’t like it when people ask me to repeat something they said, like “say sorry”. I just can’t. I can’t say their words.

>That’s true. You can’t do that. Maybe someone without Asperger’s might be able to do it more easily, even if they didn’t want to, but you really can’t. And that’s kind of cool, because you stay true to yourself. You will say sorry if you feel badly, but you will say it your way.

Yeah, I can’t really say other peoples words. I can’t.

>So, now that we’ve talked about it, and you understand a bit better…what do you think Autism is?

Autism is actually being different. Some people have an autism that is less than others and those people can be in groups more easily because not everybody knows they have autism. But the others, he has more autism and he is bullied. And that is wrong because he shouldn’t be.

Because some people that have different autisms kinda can’t really speak English, and they have trouble with things and fitting in and they are more easily bullied. People don’t understand them and they can’t say what they are needing or feeling.

Bullies look for people who are the easiest. And that’s wrong because if you have a more autism and you can’t protect yourself and people should be kind to everybody because everybody needs a friend.

Everybody has to have a friend.
Bullies don’t like peopel with friends. Nobody should be bullied.

>Do you know which type of autism you have?

I don’t know.
Less autism.
I know because if I had the more then I would know because you can’t really talk. Maybe they can’t hear or something.

(I interject with an explanation about what deaf means and how anybody – autistic or not – can be deaf)

>Do you think that people who have “more autism” are able to communicate with others?

Yes. But I don’t know how.

(I explain some different methods of communication)

Oh. Ok.

(I ask if she would be friends with someone who had more autism than herself)

I would.
Because just because you are different doesn’t mean you do not deserve a friend. Maybe he can’t speak but maybe he is still wanting friends. Bullies do not like him having friends because with friends they cannot pick on you because your friends stick up with you.

Now that’s enough autism talk.
Let’s go to bed now.

>Ok buddy.

This is Autism (Cinder McDonald)

Written by Cinder McDonald

I'm autistic.  So is my 21 year old daughter.  So is my 41 year old brother.

My brother was diagnosed in a different era, back when the word autism conferred much blame on the parents.  They moved to another state, they hid his diagnosis under other labels.  Being unaware of labels and stigma, I taught him things.  His first sign, at age 5.  How to swim, how to do jigsaw puzzles, how to read.  I saw a brother who could do many things, if one were patient and took their time.  One time, when he was 7, the doctors ranked him low on a nonverbal IQ test because he would not stack blocks.   He didn't like blocks.  What he liked to stack were red Solo cups.   That he was quite capable of stacking didn't matter to them, because he didn't do it their way.   That day, my brother taught me something about people and their perceptions, and it's a lesson that's stuck with me.

My daughter is a talented artist, and she has mastered a number of mediums - she paints, sews, sculpts, knits, weaves, makes jewelry.  When she was little, she would pull clothes of Barbies and adapt them for her beloved Beanie Babies.  As she got older, she announced that she wanted to be a costume designer.  A principal when she was a high school freshman told her that she should focus on becoming a ticket taker at a movie theater as her vocational goal.  She signed up for Voc Rehab and they told her she needed to be "practical".    She is in college, studying fashion design, and a few months ago, she participated in a local fashion show where she walked the runway wearing her own designs.  She and her friends are constantly creating all kinds of stuff.  She will have a great future.

I'm so sick of Autism Speaks' negativity.  I'm tired of their patronizing attitude that they "know best" for us.   I'm weary of them presuming that they know anything about my life or the lives of the many autistic people I know.   I've raised two generation of autistics and while it's not easy, it's not the way Autism Speaks presents it.  They are dehumanizing our children and portraying parents as their helpless victims.   We are not victims of our children, rather the truth is that we, our children and adults with autism are victims of an brutal system of care that has little understanding of autism.  Autism Speaks is a parasite that feeds off that injustice, fans the flames of prejudice and then doesn't use the money they raise to help individuals and families in need.  They take money away from the few organizations that are out there, actually doing the work.

Autism is simply...HUMANITY in its PUREST FORM.

Written by Sandy Kinnamon

 

Autism is the love expressed in the eyes of my beautiful 3 year old daughter Emily, so deep and intense my heart nearly bursts.

 

Autism is the flappier her hands, the happier she is...on her tippy toes all the while

 

Autism is the 4 am waking giggles letting me know she doesn't merely exist, but is happy to be alive

 

Autism is the tears that come when she suddenly says, "I love you" or gives me a big wet kiss

 

Autism is the grabbing of my hand, that signals...I want to be with YOU Mommy, my best friend

 

Autism is the only thing that was capable of mending the tear in my once long ago broken heart.

 

Autism is simply...HUMANITY in its PUREST FORM.

 

 

THIS IS AUTISM and its really quite (complicated and) great

Written by An Anonymous Newtown Autistic

Originally published at That Autistic that Newtown Forgot

 *A quick note on today’s flashblog ~ This is Autism.  In response to Suzanne Wright’s upsetting and fear-inducing letter entitled A Call for Action  a Flashblog has been organized to take back the phrase “this is autism”, which Suzanne Wright used several times in her letter that was posted on Autism Speaks’ website, the organization she and her husband Bob Wright created eight years ago.

(Flash blog explanation borrowed from http://emmashopebook.com/ )

This is Autism:

this is a life that sometimes catapults into hours of screaming but at other times amounts to hours of ruthless obsessive study of certain phenomenon

this is meowing in the hallways, moving hands up and down and walking without clear balance

and drawing for hours to try to capture the feelings which one had hours ago

This is Autism

this is having an outsider’s perspective on socializing, always ducking into a book or behind a laptop screen

this is experiencing not too little, but too much

being a devoted observer of background noises, of bright things behind people’s heads while they talk to you, of street signs, of birds and squirrels and trees

This is Autism

this is a culture of people who have little difficulty communicating with one another because they expect people who are autistic to never hold back the truth but to always ask before touching one another

this is a culture of those who think sitting on floors, flapping one’s hands and not making eye contact make perfect sense

this is a culture of people whose skills and abilities do differ and all of us come from differing circumstances,

but all of us know extreme levels of anxiety;

all of us are in tune with parts of the world that others routinely ignore;

all of us are well springs of emotion that are often poorly expressed;

almost all of us know the feeling of being lost and having no one to whom we can express very well the truths of our worlds

This is Autism

many of us can’t “speak” orally

many of us don’t know what the hell those faces your making are supposed to mean

but our minds are fountains:

fountains that sing with new and interesting thoughts

fountains full of ideas and possibilities

and even when we can’t vocalized

be assured that worlds are turning behind our eyes,

things are being thought,

knowledge is present

Suzanne Wright doesn’t know what the hell she’s talking about

her autistic child has not grown up

if Mrs. Wright had not been drowned in medicalized discourses

to the point that she thinks a few differences in her child make it worthwhile to radically alter that child

perhaps she’d realize that her child has a future ahead of them!

A grand future!

Every one of us autistic individuals has a future and has contributions to make.

Autistic is not just a diagnosis turned into an identity, it’s a culture, it’s a way of life and it is a real community

To all who should ask:

This is Autism

in all of its complexity

This is Autism

they can never simplify it

we are not holes in the floor

or silent gaps in the conversation

This is Autism

even if we don’t have any idea what you meant to say

or even if we said the wrong thing in the wrong situation

This is Autism

and its really quite great!

We are autism. And we will not be silenced.

Written by and originally published at Restless Hands

This is autism: “Ooh, stimmy!” used as an exclamation of excitement. Happy flaps at interesting patterns on the water, new colors on cars, math games, tricks of the light.

This is autism: Friends with special interests and special considerations. Trying to figure out what to cook when multiple autistic friends are over for dinner to accommodate everyone’s dietary needs and sensory sensitivities = a fun challenge!

This is autism: the kid I babysit puzzling out how to tell me something on his communication device– or relaxing in his hammock– clapping his hands at the park to hear the echos– his mischievous grin– his interesting ideas (waffles with mayo? OK, why not!)

This is autism: Struggling to find the words sometimes. Avoiding loud places. Being tired out by chatter, by things other people don’t even notice. Pride in finding the right words. Strength in doing the things I can. Joy in spending time with a small group of friends.

This is autism: learning new things every day. Not a puzzle, but a journey of life, in constant flux, unfolding like a flower, full of new things to discover like a starry sky, full of complexity and hope and wonder.

We are autism. And we will not be silenced.