Monday, November 18, 2013

What autism really is

Written by Neurodivergent K

Originally posted at Radical Neurodivergence Speaking

So Suzanne Wright from Autism$peaks sent out more of the same hatemongering that was tired before her grandson was even born, about how autism is terrible because the faaaaaaaaaaaamilies and we might eat food from the fridge or something and that's the worst thing ever.

That is not what autism is.

This is autism:

one very fair skinned female presenting person with light brown hair & a pink hoodie and a pink and purple haired fair skinned person with glasses, an orange shirt, and a white shoulder riding cat

Autism is friendship, the kind you can only have when you meet someone who is like you. Allistic people don't so much understand what that is, because they expect that most people are on their wavelength. But Autistic people know how special that is, because it is rare and it is precious. Someone who understands intuitively, who speaks your language, is worth their weight in something way more valuable than gold.

And autism is community that comes together. There's this idea that we can't do that, but that idea is wrong. Never have I ever seen another community that takes care of its own so much. We have our issues, as all communities do, but we also have fierce loyalty and ferociously fight for and care for our own. We know what it is to not have that. Again, we know how beautiful that is once we find it.

Autism is adventure. Or craving it at least. Jumping into that freezing cold water because it was there. And then jumping in again and again because it was freezing but it was a delight every single time. It may not be the normal thing to do, but it was better than normal. It was exhilarating.

Jumping into that water? I felt more alive than I think most people ever do. It was just me, the air, then the water. The sensation of my stomach rising? Stopped time until the water woke me up. It was actual perfection in an experience.

black and white photo of a dark haired fair skinned person doing a leap. their back foot is up by their head and their front knee is bent at an acute angle

Autism is focus. This leap is called a double stag. My focus was right on the sole of my foot, visually speaking. Internally speaking it was only on what I was doing. There was no thought as traditionally described. There was me, music, the mat, and movement. That's it. I can do that. I cannot meditate in the usual sense, but I can become one with movement. Everything else goes away.

So it is when I am focusing on something that I love. The way I love? It is deep. Autism is deep love. People write it off as special interest or obsession, but even if it's not something I can excel at, I can excel at loving what I love, loving what I do, loving who I love. Autism is being able to be consumed by love and interest, it is giving 100% because it is an insult to the thing one loves to give any less. Autism is going big or going home.

Autism is finding myself and losing everything else while jumping, flipping, spinning. And this is the best thing ever.

dark haired fair skinned adult female presenting person and dark haired fairer skinned boy presenting person on a couch. they are smiling and the boy is pressing his forehead and shoulder into the adult

And now we are back to autism is love and community. Autism is also sharing. Autism is knowing people because of autism. My young friend, Leo of Squidalicious fame, shared with me. He shared his iPad and his stims and his love. And he and his family are just a few of the many people I care about deeply who I would not have met if there was no such thing as autism.

No one ever said that being Autistic is easy. But we do say that it's worth it. We're okay. We love and deserve to be loved.

THIS is Autism (Jane Strauss)

Written by Jane Strauss

Originally published at her Facebook page

THIS is Autism

This is Autism:  marching to a different drummer, following your passions, never fitting in, except at a cost --and being a valuable member of society worthy of respect.

This is Autism:  Using your analytical skills to literally do what your job description for Organizational Board Member says you are supposed to do and constantly being at odds with the rest of the Board because your view is different.  Earning the "Ignore Me At Your Peril" Award, specially devised for you, from that same organization -- four years later.

This is Autism:  Failing the standardized hand-eye discrimination test.  Coming home and making 3-d line drawings of things you like.

This is Autism:  Receiving Mental Retardation and Related services as a preschooler because it is the 1980s and the US does not recognize Autism apart from Cognitive Impairment - let alone as a Spectrum - let alone in females. Being assessed for learning differences, dyslexia and dysgraphia --- and all the school psychologist wants to discuss is your extreme giftedness, which your parents had noticed long before.

This is Autism:  Being thought to be average because the school uses a drawing tool to assess creativity and your ability with a writing instrument is delayed.  Becoming an award-winning film maker and instructor as a teen and adult.

This is Autism:  Being slow to start reading, until you find something in which you are interested.  Reading thousands of pages of adult level material in a summer.  

This is Autism:  Not talking until past age three and having severe sensory integration issues.  Becoming the PCA, teacher, and Aide of choice for kids on spectrum because you understand what is happening and can act accordingly.

This is Autism:  Working with the public, full days, all week, with polite scripting and encyclopedic knowledge of the store in which you work.  Earning the highest level of customer service award  for your helpful, polite  and kind demeanor and genuine wish  to be helpful.  Being afraid to disclose because of fear your employer, a corporate supporter of Auti$m $peaks will discharge you because they think Autism is Something Else.

Autism is looking at the world sideways

Written by and originally posted at logicalabsurdity

Autism is looking at the world sideways
Autism is seeing, hearing, feeling, tasting, smelling, everything’s more, everything’ssharp, and sometimes that’s too much but sometimes it’s just exactly enough (and anyway it’s the only thing I’ve ever known)
Continue reading at logicalabsurdity

What is Autism? (Iris Gray)

Written by Iris Gray

Originally posted at Purple Aspie

What is autism? That’s a good question. There’s no real answer to it, because autism is different things to different people. To some, autism is a curse that must be eradicated. To others, it’s a variation in human evolution.
I can speak only for myself and what autism is to me.
Autism is a part of me. It is a part of me that most of the time is neither good nor bad but is simply there. I have blue eyes, I have blonde hair, and I am autistic. That’s just the way things are. As Lady Gaga would say, I was born this way.
There are times when autism can be annoying or frustrating. These are usually times when my sensory issues or social skills deficits get in the way of my doing something that I want to do. That doesn’t mean that autism is bad. It’s just that being autistic can be more challenging than being neurotypical.
There are times when autism can be rewarding and fulfilling. When I attend autism conferences and spend time with other neurodiverse people, I have an amazing time and come away enriched. When I can figure out a problem by thinking differently, I’m thrilled. When my sensitive hearing enables me to hear something that others have trouble with, it’s like I’m rewarded for being autistic.
What is autism? Autism is my friends. Autism is my community.
Autism is me.

Patterns, processes, and a PhD

Written by spockette
I am an autistic adult woman. I see patterns, hear music perfectly in my head, and notice things others don’t. I commune with cats, and am intensely loyal to those I grow to trust.

I almost did not graduate from high school, and there were not high hopes for my success. My parents believed in me, though. Because of their support, and the willingness of others to accept me for who I am, I have made it to where I am today. I’m nearly 30 and am pursuing a PhD in a field which suits my natural talents. I still have trouble turning in assignments. I think part of this is because I don’t know where to start.
I am curious, and love learning and ideas. I’m not afraid to try learning new things—it took me a while to figure it out, but I now use my love of learning to expose myself to new people. Intramural clubs have provided me a place where there are lots of other really awkward people who are also new to learning something.

I took down a blog several years ago because I was not comfortable, and attacked by people who didn’t understand. I’m still here, and I’ve grown. If you have an autistic child, or know someone on spectrum, celebrate the way they grow with them, please. It’s unique and beautiful.

This is Autism (Erica A. Wise

Written by Erica A. Wise

"This is the week America will fully wake up to the Autism Crisis.
If three million children in America one day went missing--what would we as a country do?"

These are the opening lines of Suzanne Wright's call to action for Autism Speaks policy and action summit in Washington this week.  Later in her call to arms, she says things like "These families are not living."  "This is autism.  Life is lived moment to fear of the future."

I want to set the record straight.  Our family is living, our lives are not full of despair, nor do we fear the future.  Life is lived with an appreciation of moment to moment that I wish I could have gotten when I was an anxious twenty something, biting my nails about my own future.  Most of all, my two autistic, unusual kitties are not missing.  If anything they are more present, most definitely here, living life loudly, messily, sometimes joyfully, pretty much like the more typical children of my acquaintance, except maybe sometimes a little more so. 

I'm not going to surround our lives with pretty sparkles.  That loud and messy part is definitely sometimes too loud, too messy.  My kids need supports that most of the other kids can do without and the struggles of each age are often more intense.   Being their parent is a challenging job.  So much of what is difficult though, is dealing with a society that isn't sure how to deal with them.  I won't say our lives are just exactly like the lives of the more typical families around us.  But they are our lives, our busy, hectic, frustrating, interesting, funny lives.  In that way we are just like the millions of other families with kids in this country.

That is the reason to have a national plan, because we are a part of this nation, and we deserve a voice.  We deserve a voice that doesn't believe that the nation would be better served by making sure there aren't more kids like mine.  A voice that that thinks telling the world that we are a burden, a cause for despair, and a scourge or an epidemic is somehow helpful to us.  In case it isn't obvious, it's not helpful.   My children, their parents, and autistic people throughout the nation have plenty to contribute.  Every person has the ability to change the world for the better, autistic or not.  I hope we can support champions who are in favor of finding ways to help every person share their abilities, without this terrible assumption that somehow we can know what that contribution will be, before a child is even grown, before an adult life has been fully lived.

So, to me, saying "This is Autism" is the same as saying "This is our lives".  Autism is children who meow and hiss at me when they are angry.  Autism is a little boy who has a plastic dinosaur for a buddy.  Autism is feeling like red touches your soul.  Autism is knowing that in the future you are going to invent the most awesome thing ever.  Autism is worrying that your children are going to be mad scientists who rule the world.  Autism is thinking they might also be the super-heroes who save the world.  Autism is needing to go into a quiet room to talk to a friend.  Autism is knowing the importance of that friend.  Autism is hearing that far away sound that no one else hears yet, and letting the group know the train is coming. Autism is feeling like you will never see again if the flash bulb goes off. Autism is knowing exactly where all the light switches are, even though you've only been here once before.   Autism is having so much energy you have to just shoot yourself straight up into the air like a rocket.  Autism is feeling so tired that you just need to lie down right here.  Autism is not always understanding what people mean when they say things.  Autism is sometimes understanding just what people mean down underneath everything they are saying.   It's living our lives. For me it's also raising our children.  The real children that we do have, not the ones we imagined might appear, but the kids that are living right here.  Autism is being human, and both the same and a little different than everyone else who is human. 

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."