This is autism

Last Monday, Autism Speaks told the world that autism is:
. . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children

That kind of autism is not my autism. My contribution to the This is Autism Flash Blog.

I enjoy the sounds of the city around me, the strains of birdsong that I can hear even through traffic, the purring of my cat that almost but not quite manages to drown out all other sounds, the clicking of my keyboard while I’m typing. I hear the trains going past in the distance and I love getting sucked into that rhythm. When I listen to music, I become the notes, the melody, I can pick out the individual instruments and still hear how they work together to create a single sound. I sing along with the counter melody almost by instinct.

I have problems when people raise their voices, start yelling, even from a street away. I have problems with loud cars and motorcycles and airplanes, those sounds hurt my ears so much. Locations with lots of echo send me into sensory overload. Loud bangs, or even just someone clapping suddenly, frighten the life out of me.

This is autism.

I’m able to make the most outrageous statements in a completely neutral tone of voice and with a neutral facial expression.

My friends call it deadpan.

This is autism.

I’m unable to reach the highest shelves in my kitchen or at the supermarket without assistance. That means I either have to buy specialist tools like stepladders with my own money, or ask others to get things down for me. There are no services available. Sometimes I want to cry with frustration when I can’t get something from the top shelf on my own.

This is being 5’3″.

Autumn makes me happy because the piles of fallen leaves make me want to play in them, throw them in the air, smell the mulchy scent of them, hear the whispery crispy sound of them as they’re crushed. Fallen leaves make me feel like a child.

Winter makes me happy because snow is beautiful and shimmery and light. It gives everything a new shape. It’s soft and crispy at the same time. Snowflakes have the most intricate patterns. And having a snowball fight is so much fun, even though the sensory overload from having a snowball land in your collar is indescribable. Snowball fights make me feel like a child.

Spring makes me happy because there is no colour more beautiful than the green of new leaves. I stare up at them and see the sunlight fall through them. And I feel the wonder of new life, of seeing everything for the first time, the wonder of a child.

Sometimes I am able to shake off the shackles of social expectations and act like a child. I wish I were able to do so more often. Not being aware of social rules has its benefits.

This is autism.

I have to deal with people who don’t think like me every day. One of the greatest gifts that autism has brought me is connecting with other autistic people. Sharing the same way of thinking doesn’t automatically mean that we get along, or that we’re all good people. But there is an instinctive level of understanding that has eluded me for so long. Something that is lacking in the majority of people I meet. They don’t understand. And sometimes it seems as if they don’t even want to understand. That they don’t want me to be me.

I’m tired of being told I’m smart enough to figure things out myself. I’m tired of being told to fit in, to stop being so contrary and different. I’m tired of trying harder. I’m tired of getting fired for not being sensitive to office politics, for speaking the truth at the wrong time, for not understanding that sometimes words are more important than actions. I’m tired of having people angry at me for shutting down, for not looking at them, for not responding quickly enough.

This is not autism.

It is not autism that makes people treat me like this. And it is not autism when I’m hurt by how people treat me.

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28 thoughts on “This is autism

  1. Big hugs to you! I hear the leaves call too (but I live in Texas in the US, so there aren’t enough to play in here).

    And I’m not quite 5’5″ so I’m right there with you looking for the stool! At the store, when I need to reach the top shelf, I step up quickly on the edge of the bottom one and hope for the best!

  2. I love the way your post weaves autism and other challenges, and your ‘This is being 5’3″’ section made me chuckle… not because I found it humorous, but because my wife is 5′-0″, and at 6′-1″ I am often on the other end of this… having to bend over to see things at the back of the counter in the kitchen, or at the back of cabinets, and even overlooking things that are in plain sight for her…

    It is definitely hard when others expect (or demand!) that you should do things in a way that isn’t natural for you… and no, that isn’t autism, it is ignorance, or arrogance, or one of many other negative things, but certainly not autism. Thanks for sharing!

    • I thought of the being short thing because I also have a lot of friends who struggle with being “too tall”… like constant back pain from bending over a kitchen counter that’s too low. It is one of the ways in which “being outside the norm/average” can cause physical impairments and even pain. Even though nobody in their right mind would call that a disease or a tragedy.

  3. I really like your post. It is a reminder that we need to just accept people for who they are. Everyone is unique, everyone has limitations. All of us want to conform and be part of “the group” but at the same time we want to be individuals. Individuality is what makes the world interesting to live in but it also make it difficult because we only see things from our personal perspectives.

    • Yep. Everyone has their own struggles. Some of mine are related to autism (and I am so glad to have that knowledge!), and some of them are uniquely me. Another person might struggle with autumn leaves because they are a reminder of a pet that died too soon just as the leaves were falling, or even just an obnoxious chore that needs to be done before settling down on the couch with a favourite TV show or book. Everyone is different. I have no right to say that someone else’s struggles are insignificant or trivial, just as they have no right to tell me that mine make me abnormal.

  4. You always express what your life is like so clearly and articulately. So why can’t people listen? If there is any failing in the situations you find yourself in, it is not yours.

    • I was talking to my NT partner about that this afternoon, he says I express myself a lot better in writing than speaking, and for him it’s the other way round! So we have misunderstandings when messaging or texting that are usually due to an unfortunate word choice on his part and me taking it literally, and we have misunderstandings face to face because my spoken words and body language are completely unreliable! It’s something that I’m glad to be aware of, because it means I can work to change the parts that I do have influence over (like learning new emotion words! that’s a biggie for me) and accept the parts that are just too big to tackle (learning how to do appropriate facial expressions).

      Hm, that’s a really long winded way to say thank you for the compliment! 🙂

      • But very interesting. I like the way you express yourself and are aware of yourself. I used to express myself better through writing – to me speaking jumbled my mind up. Words were concrete and I could see them and they wouldn’t change. I could see what I’d written and build on it. I think you are right, learning new words is a good idea. For me learning new phrases really helped me be more confident speaking.

  5. I’d cover your ears if it would help with the sensory overload. I’d also reach for the top shelf, but I’ve got a dodgy neck. One out of two ain’t bad, eh? 😉 x

  6. I loved the 5.3 comparsion, but, to paraphrase autism awareness folks, I am only 5.0 so you don’t speak for me, more severely short-statured than you are. I obviously need my 6.2 husband to speak for me.

  7. Below is my version of the same blogpost:
    An Autistic Speaks to the Community – A Call for Action.
    This week is the week America will fully wake up to the Autism $peaks crisis.
    If six million people in America one day went missing – what would we as a country do?
    If six million people in America one morning were wiped from existence – what would we as a country do?
    We would grieve. We would blame terrorists. We would declare war on the guilty party and innocent countries. Finally, we would mourn the loss of so many opportunities for national advancement.
    We’d leave no stone unturned.
    Yet we’ve for the most part lost touch with six million American people, and as a community, we’ve done nothing.
    We’ve let people be silenced, disenfranchised, and murdered.
    No more. Today is the time to rise up and take our futures back from those who claim we have none. It is time to work together in a concerted effort to shut down the organisation that claims to want to help Autistic people speak even as it works to silence us. It is time to shut down Autism $peaks.
    Don’t we and our families deserve it? America has always been about its great people.
    Yet we seem to be forgotten in the debate about a genocidal ‘cure’ – even though we have often led others into the future.
    Each day across this country, six million moms, dads, and others who live with Autistic people wake to the sound of Junior stacking cans, Jack playing video games, or Mom typing her latest bestseller, and they smile. Do you get that, Autism $peaks? People smile knowing that their loved ones are happy doing what they do best.
    These families are living better lives than you envisage for them.
    Autism $peaks says that these people are only existing and dare not call their time their own, but they are not the hopeless, helpless victims of their loved ones’ neurology that the organisation so clearly wants them to be.
    This is Autism.
    Life is lived in the moment, enjoyed to the full, and people’s worlds are not a series of never ending meltdowns.
    This is Autism.
    Parents and guardians smile at their child’s joy in discovering communication through PECS, AAC, sign, and speech. They laugh to share their child’s pleasure as they dance with a long ribbon, the Autistic person intently watching it as it streams around them. They marvel at the astonishing imagination of their child as they draw complex fantasy worlds entirely from their heads.
    This is Autism.
    On the bad days, all the family members out there – 420 million around the world – feed into the lies of Autism $peaks because their loved one is melting down after reading about a parent, often female, who has been encouraged to murder their child by an Autism $peaks PSA. On the good days, of which there are so many, they feel the joy and contentment that is their right, and are able to ignore the poison spewed onto YouTube and other places by Autism $peaks.
    This is Autism.
    If any of this sounds familiar, you know Autism $peaks. And if you know Autism $peaks, you know we are looking at a monumental population and information crisis. And we have no international plan.
    What I described above is really just the beginning. In the next ten years, up to a million Autistic Americans will lose their lives at the hands of those they are supposed to be able to trust, and those who kill them will be met with sympathy and face no charges as if we are not also human beings. Up to ten million Americans face the misapplication of ABA in their own homes and places like the Judge Rotenberg Center.
    But what about sympathy for the human beings who died just because they had a different neurology? Why no jail time for those who choose to kill rather than giving their child to people who actually care? Why no condemnation for the organisation that actively encourages these murders by calling us ‘burdens’ and ‘financial nightmares’? And why is the torture of vulnerable people ignored and condoned when the waterboarding of suspected terrorists was rightly vilified in the international press?
    There is no plan to build a city for six million people so we can be guaranteed our safety.
    So let’s dial back a minute and consider the people being diagnosed as Autistic every day in this great country. Do we have a plan for them? Are they all being treated with dignity and compassion? Are we doing anything to guarantee they get a fair shot at a safe and secure future?
    We know that children from minority and lower income families are not getting diagnosed as early as they could be, so their castigation begins later, which might increase their chance of a hopeful and successful life.
    How about in school? Why should there be a national curriculum which underserves those who struggle with language? Why are we encouraging teachers around the country to share lesson plans and methods that work only with people of certain neurologies? Could it be because of Autism $peaks’ corruption?
    But – there is no international plan.
    And – our futures depend on it.
    According to Autism $peaks, it costs $2.3 million dollars to care for one Autistic person for their lifetime, and they say it will be well over $137 billion dollars for all of us.
    But that is because that is all we are to them; not people with varying levels of ability, only costs to be considered. They are very careful never to say what the real cost is to someone who raises money for them in the faint hope of receiving help for their child, help that is unlikely to be beneficial even if it is given.
    What is our plan?
    We can’t even craft one – without collaboration.
    Close your eyes and think about an America where six million Americans and counting are told they cannot take care of themselves without help, even when they can. Imagine six million of our own – unable to dress or eat independently, unable to use the toilet on their own, unable to cross the street, unable to judge danger or the temperature for themselves, unable to pick up the phone and call a friend because their parents and guardians have been brainwashed into believing that they will never achieve these goals when all that is required is the right support at the right time, just like for non-Autistic people.
    This is an international emergency. We need an international action plan – NOW.
    I am posting this as a call for action on an international plan – NOW. I am asking the Autistic Community to respond to the threat of Autism $peaks with all the urgency it deserves – NOW.
    Autism $peaks – here we come – because we have an equal right to life – NOW.
    Suzanne Wright and her husband Bob co-founded Autism $peaks in 2005, and they have been ripping off their donors ever since by massively underproviding the services they were set up to deliver.
    Copyright © 2014 Romersa’s Protégé. Individuals and groups are free to copy and share this work for all purposes except large scale distribution, subject to credit being given and any derivatives being released under the same or a similar licence. All other rights reserved.
    Adapted without permission from an Autism Speaks blogpost under an exception for the purposes of criticism and review enshrined in the CDPA 1988.

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