Tag Archives: Autism Positivity Day

A is for Anxiety: Expressions of PosAutivity: #AutismPositivity2014

By R

Recently I’ve blogged about the possibility that my son has Aspergers syndrome and the long journey we have started as parents trying to get him an assesment and appropriate help at school (indeed today we had a positive meeting with the Special Needs Co-ordinator (Senco) at his school).

Today, as my small part of Autism Positivity, I thought I’d go off topic on this blog again (after all, it’s supposed to be about my mental health) and shout something out to anyone that’s listening.

My son is wonderful and there’s is absolutely nothing wrong with him!

And I absolutely mean that. He is kind, helpful, inquisitive, friendly, cuddly, energetic, generous, inventive, knowledgable, thoughtful. Actually I’m a bit wary of writing a list of adjectives about him, as I’m bound to leave some of his great qualities out. I love him and he’s great. There is nothing wrong with him and I don’t want to change him in any way.

So why all the letters to doctors and conversations with schools?

Because I want to change other people. I want to change the way they behave with him.

Whatever diagnosis he does or doesn’t end up with, I know that he’s not your average child. I mean, every mum thinks their child is extra special, but more than that he certainly seems to think and behave a little differntly from some of his peers.

But different doesn’t mean wrong…

Read the complete post here: http://aisforanxiety.wordpress.com/2014/04/30/expressions-of-posautivity-autismpositivity2014/

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Love is the Language and Making Connections #AutismPositivity2014

By Yuk-Lung Chan

‘Love is the language’ By Yuk-Lung Chan

 

 

Making Connections

‘Making Connections’ By Yuk-Lung Chan

 

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Unstrange Mind: Expressions of PosAutivity: #AutismPositivity2014

By Sparrow Rose Jones

Autism Positivity 2014 Flash Blog
It’s April 30th. The last day of Autism Acceptance Month. And the day of the third annual Autism Positivity Flash Blog. I didn’t write for the last two iterations. The first one, I didn’t hear about. I was not part of the online Autism community at that time because I was taking a break from the stress of things — I had met my first local Autistic adult and it turned out horribly with stalking and threats. And I was living with a partner who hated autism and Autistic people. I did not know that I am Autistic when I got together with him and my diagnosis was pretty devastating for the relationship (which still somehow continued for another decade afterwards.)

I first learned about this project a few months after it launched for the first time and I was kind of shocked into silence. You see, I have a tendency when frustrated to treat Google as a sort of oracle. I will type a complete sentence in, like “He calls me stupid all the time but I’m really smart.” Once I typed in “My rat died and I’m very sad.” The hits that are returned from these sorts of non-questions are often enlightening, sometimes comforting, sometimes informative.

So I honestly don’t know if I’m the person who typed, “I wish I didn’t have Asperger’s,” but it was so much like the sorts of things I do type into Google when I’m feeling lost and distressed and, with all the stress I had in my relationship and with university and fighting for accommodations no one wanted to let me have and getting accommodations that just made my classmates so angry they bullied me so much I wished I had just dropped the class instead — I did actually drop out of becoming a math major because the attitude toward accommodations in that department was so hostile that I knew I wouldn’t be able to finish the degree either way — with all that going on, I was having a really hard time and so much of my stress and struggle was centered around being Autistic.

I will never know if I’m the person who triggered the first Autism Positivity Flash Blog or not, but it was so much the sort of thing I would have done, that I could only sit in shock and read through all those letters to . . . . if not me, someone exactly like me.

So I didn’t write last year because I was still too overwhelmed by the bigness of it all. I sat and read every single entry from that first year and I cried a lot and, most of all, I felt supported. I was afraid to say anything to anyone about the possibility that it might have been me they were writing to. I figured it didn’t matter, because whether it was me or not, there are so many other people out there who desperately needed to read those words. There are hundreds, maybe thousands, of “me”s out there feeling miserable about the cards life dealt them and wishing they could play any other hand but that one. And I still have no idea if it was me or not, but I’m revealing now that it might have been me because it’s important to know that if you are going to understand what my Expression of PosAutivity really means: it might as well have been me and this project gave me something to rejoice about at a time in my life when there really didn’t seem to be anything good about me or my Autistic life.

I didn’t necessarily believe every word that I read, but it awakened something in me. A few months later, I re-opened this blog. I had shut it down after the bad experience with the local Autistic. I was afraid and I was ashamed. I re-opened the blog and in that first post, I published my photograph and my full name. I was protesting Ann Coulter’s use of the R-word and I was putting myself out there to say “this is who you are hurting when you use that word” and also putting myself out there to say “I am no longer afraid and ashamed. I will be known.”

I could not have found that courage if I had not read all those letters to . . . . someone like me . . . . that were written back in 2012.

So the joy I want to write about today is this: life dealt me a hand but it wasn’t Aces and Eights. Sure, I haven’t figured out what to do with that Trey of Hearts yet, but it’s not a Deadman’s Hand and, what’s more, the cards are merely slips of paper that only carry as much power as the players choose to assign to them. What life also dealt me was a table filled with players who have decided to turn the game into something we all can win. I am seated with great people who want to help me figure out where that Trey goes. I am seated with generous people who are willing to show me their cards so we can all play together instead of against one another.

I still struggle with the notion of “Autistic Pride.” It’s not easy for me. Inch by inch, I approach it. But in those dark times when I am unable to take pride in myself, I can always look around me and take pride in my community. We — Autistics and allies — are strong, brave, loving people. We are people who work hard to make the world better for us and those who will come after us. We are people who will take the time to write anonymous letters of hope and love to people we’ve never met — anonymous people crying out for some relief from the pain. I take joy in my people, my tribe, my family.  We are a loyal people, an understanding people, a forgiving people. I am honored to sit at the table with the wise and noble souls I find myself surrounded by.

I no longer refer to myself as “having Asperger’s.” For one, it’s now a historical term, like Dementia Praecox or Invert or Hyperkinetic Reaction of Childhood. For another, I’ve learned that what I am is Autistic and I have no need for a special label that attempts to place me in some hierarchy of “functioning levels” (and couldn’t place myself there very well even if I tried, since my “function” is so variable from task-to-task and from day-to-day.)

But also, I no longer wish I didn’t have Asperger’s (or autism of any stripe.)  I’m dating someone different — someone who loves me and admires all of me and understands that I am who I am because I am Autistic, not in spite of it. I am on a different life path so I am no longer fighting with a university for accommodations I need but am punished for requesting. And I can now see that being Autistic is not only who I am, through and through, pervasively, but it is something that connects me with a warm, welcoming, compassionate community of the most decent and loving human beings I’ve ever met in my life. Not a perfect community, because it’s made of people are none of us are perfect. But a community that has repeatedly taken my hand and helped me up when  I fell to the ground and lay there, hopeless.

This is what I am PosAutive about. Being Autistic put me in the middle of the grandest community of people I could ever have hoped to find.

 

Original post at Unstrange Mind:http://unstrangemind.wordpress.com/2014/04/30/unstrange-mind-expressions-of-posautivity-autismpositivity2014/

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Expressing PosAutivity in A Negative World #AutismPositivity2014

By Kerima Cevik

Dear Mrs. Çevik,

I have spent the past week of ESY getting to know Mustafa. He is a pleasant happy 5 year old. We have discovered he has developed his own gestural language. He is able to communicate his needs very well. There is no need to send lunch, unless you are concerned about allergies. He enjoyed his sandwiches, grapes and juice with his classmates. He had a great deal of fun today.  I have attached a list of supplies he’ll need for next week’s activities. I am looking forward to working with him.

                                                          Sincerely,
XXXXXXX XXXXXX, M.Ed
Image of multicolored background with uplifted arms
and hands reaching upward  with the words
Autism Positivity 2014 Flash Blog written in black
them

There was a time when my son Mustafa spoke Turkish. Turkish imparts more meaning with less verbiage. I believe this is why he chose Turkish,  despite hearing two other languages spoken in our home. When expressive language failed him. he created his own method of communication, using a combination of the simple ASL signs he was learning and gestures, sometimes grasping objects and putting them together in order get his message across. Once he entered kindergarten, al his attempts to communicate were ignored everywhere except at home. There was a push to invalidate his attempts because they did not fit into the definition of the language he was expected to speak. PECs were half heartedly presented as an alternative and we were asked to reinforce their use. When I asked how he was supposed to learn grammar from these cards, I was told it didn’t matter, because according to professional opinion, he was not competent to create more than two word sentences.

How low would your frustration level be if you used every possible thing at your disposal to communicate and you were deliberately ignored?

When I say my son is heroic, what I mean in part is the way he handles the issues in his life like systemic ableism . Were I in his place, I believe I would meltdown repeatedly for hours on end. Yet my son gets up each day, and puts all his effort into finding any way he can to send messages to a receiver. Communication can only occur if the receiver accepts the message sent.

He is, unlike presumptions based on his labels, an incredibly patient preteen.  His frustrations are natural considering his circumstances. I didn’t learn this overnight. It took directly working with him for years, looking at him based on what he did in homeschool and not what we were told to believe. He is not a secret genius. He is not, like Big Bird, eternally 6 years old. He is not a nonspeaking infantile angelic figure in a growing asexual body here to test my faith. He is an 11 year old boy, with the mischief, hopes, dreams, good days and bad of anyone else his age. He has great challenges and he spends each day of his life in a battle to overcome them. He needs three things to express himself; communication supports, a person willing to accept all avenues of message delivery from him, and that all those working with him assume he is competent to communicate expressively. He does not require verbal speech. He needs respect and the belief that if given the assistive technology and supports he needs, he can express himself.

Sometimes the world of activism is so gruesome and harsh, and so much negative news hits so quickly that it is overwhelming. I watch people get caught up in passionate battles to be heard, to get their points across because sometimes those points mean saving lives in the balance. But the internet distances and that can cause great harm. It creates people who don’t really behave the same way offline. Hurtful nasty individuals who carry their unhappy lives online and attack others for no good purpose. I see deliberate posting of inflammatory content with the intent of spiking hits on social media. I see people looking for answers who are caught in the autism wars of groups with cult like followings and dangerous destructive agendas that condone murder and I feel myself reeling back from it all. I feel the need to unplug.

When I need air, when I want to find my center I look at my son. How tall he is now, the unmistakable mustache, the glimpses of a calmer spirit. All the professional warnings of puberty and its struggles notwithstanding, the mother who wondered what would happen when her son towered over her is now sitting beside him each day and breathing to the motion of his rocking in his seat, smiling when he reacts with joy at making himself clear. The pall lifts from my life because I remember he is the reason for what I do. He has already surpassed other’s expectations. I feel the air filling my lungs. Exhaling feels like walking in sunlight.

Blogging was never for me. It was and is for him. It was to leave a trail of words to help him find his way to the reality that he was, is,  will always be, a loved person. He matters. In a world where his peers will always be measured by the worst moments of their lives, he needed to know, everyone needs to know, that our son’s person-hood is measured by all the moments of his life. The joyful moments are so happy because we can look back on the where we began this journey and see how far we’ve come together. This body of work is a legacy for him to know, whether we are here or not, that we love him as he is. Not because we hope to change him. But because we can see him in his entirety now and we know he is an amazing person. He is a stronger person than I am. He perseveres. He overcomes, regardless of how long it takes him. He does not give up. These are the qualities of greatness. .

I could tell you that he uses a TouchChat HD somewhat to express himself. I can tell you that once all the other myriad medical questions he deserves answers to are addressed we will dedicate all our energies to this single task of helping him master the AAC app. I can tell you all about how occasionally but rarely,  he has spoken words. His voice is changing. We are surprised to learn that his changing voice is becoming a true baritone. But that is really not what this is about. This is about telling you that I believe that my son is competent to express himself without verbal speech. His performance art in communication is patient and beautiful.

I am positive that my love for my son is returned. He demonstrates that each day. Without saying a word. By his patience, an arm around my shoulder at movie time,  walking back into a room to hug out an apology for something gone wrong. I know he has very few people he cares for in this way. I am aware therefore, of how very important it is to be one of those he loves.

I cannot impart on you what it does to an autistic child when you understand them. Their entire quality of life improves. They gain confidence. They begin to self advocate. They try their best each day. Many parents have stories of learning their children must have been in excruciating pain for days weeks even months and not been able to communicate it to them. Looking back on the meltdowns and behavioral issues then has them wondering how any child could endure such things without melting down continually or lashing out more frequently. Behavior is communication.

If you want your life with your loved one to change for the better, start by changing how you feel about them. They know, in your body language, if you are disappointed, angry, ashamed. When you have done that work on yourself, begin to observe your loved one. What happens before a crisis. What happens before joy. Then do whatever is necessary to help your child complete the communication cycle with you. Be the open receiver to the message.

Love your child. Or as my late uncle John used to say when we ended our phone conversations.

“Take care, kid. Enjoy your child.”

 

Original post at: http://theautismwars.blogspot.ca/2014/04/expressing-posautivity-in-negative-world.html

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Shaping Clay’s Expressions of PosAutivity: #AutismPositivity2014

By Michael Scott Monje Jr.

Reading Against the Grain

If there’s one thing, and only one thing, that I’m going to talk about with regard to autism and communication, it has to be the way that it changes the context of what I’m reading when I read literature. For me, almost every story I encounter is multicultural literature, since almost all of them have either been written by allistic people or for allistic audiences.
It might seem like this is a small thing, or overly obvious, but it’s not. Consider this: that every time you are about to read a story from 50 or 100 years ago, or from a region of the United States you’ve never lived in, you are actually reading about another culture, another people, and another set of social assumptions that you don’t really understand.
Most of us latch on to this and do the work of cultural translation when the break between ourselves and the characters we’re reading about is obvious, like when we read work that is translated from another language or by someone from a different racial or ethnic background. Sometimes, our teachers try to remind us that the social and cultural realities that books respond to are not the same as the ones we are experiencing, but more often than not, they do so in a way that still attempts to make the story’s message meaningful to our immediate circumstances.
That’s not how reading works for me. Unless I’m reading work by other Autistic people that is intended for an Autistic audience, I am constantly caught up in an attempt to understand the context of the intended reader’s experience. To me, as an outside observer, the enjoyment of the story is equal parts what is actually in the story and what the writer’s choices say about zir view of the “average” reader of zir time and place. Each book is an argument about what a writer thinks the commonly held beliefs of zir culture are and what that writer’s attitude toward said beliefs are.
I am never closer to another human being than I am to the writer of a book while I am reading it. If I were able to coast along on the assumptions about motivation and priority that govern most people’s approaches to storytelling, I would not find myself looking so deeply into each story. If I did not have to struggle to understand why characters would care what other characters think about them, then I would miss out on the varying levels of cultural conformity and the diverse ways that deviance has been policed across different societies.
If I thought like allistic people thought, I might have missed the fact that Dickens’ London is absolutely not the same place as Woolf’s London, and that the entire social ethic of the two writers’ times has changed to the point where the decadence that lies between them is not merely an artistic change, but an actual death and rebirth of a national identity.
I’m not saying that allistic people don’t do this. English departments exist in colleges because they do. What I’m saying is that they have to be specially trained to do it, and they usually only apply these skills and methods of thinking to literature. For me, these skills are a natural part of my communication process, because the act of close reading is the same as the act of translation across languages and cultural contexts. Since almost every conversation I have had in my entire life has involved this kind of translation, every communication I have is roughly following the same process I use for unpacking literature.
Because the way that I read and understand stories is tied in to the way that I navigate communication in everyday contexts, people think that I have a special insight into the things I read. This is often reinforced by the fact that I have so much to say about so many things when I read, even if I only read something once. What they miss, though, is that the effort I save by being able to close read something in a single pass is not really energy saved. It is counterbalanced by the fact that every communication I have with other people is just as taxing to me as doing full-on literary interpretation.
The result of this uneasy balance is a tendency to communicate in parables. It is much easier for me to tell a story and then to wait for someone to unpack its meaning than it is for me to have a straightforward discussion with someone. This is an extremely helpful thing to me when I am working, but it can be frustrating when I am dealing with people in a face-to-face setting. When I find those communication partners that can recognize it for what it is, though, then I have some of the most rewarding conversations I’ve ever had.
When I can’t communicate in stories, analogies, or parables, then finding words becomes much, much more difficult for me. Luckily, as I produce more and more creative work, there are less and less people demanding that I talk to them in their own ways. They are learning to switch into my vocabulary, to view my less direct communications for what they are.
My need to deeply interrogate everything I read has not always been met. There was a long time in my life when I struggled so much to grasp the basic point of character behavior that seemed utterly inane to me, and I was not mature enough to accept that behavior I did not understand could be motivated by honest and worthwhile thought. I was nearly thirty before I found the maturity to see that the world was not divided into cultural contexts that I could decode and banal ramblings by people with empty lives, but that it was instead simply full of cultural contexts that could be decoded if I had the right scaffolding.
Stories are the textbooks to our theory of mind. The important thing to remember is that not everyone will read a textbook and develop the same theory. If we did, then there would never be controversy and debate, and our discourse would be nonexistent.
Please remember this article the next time you hear someone call another person’s communication “nonsense”.

Original post at:http://www.mmonjejr.com/2014/04/shaping-clays-expressions-of.html

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FRANKENWEENIE: Sparking Connections #AutismPositivity2014

By Antonia Lidder

2e0db-screen-shot-2014-04-21-at-6-45-04-pmWhen your child is diagnosed with autism, it can feel like your world has fallen apart. Last year, when our son Gabriel was three, it happened to us. And though life is extremely hard for us, and much more so for him, he has opened our eyes, minds and souls to magical things in everyday life – like cinema.

Our son is essentially non-verbal, having very few words, and like many with autism he has major difficulties with language, communication and social interaction. We first took him to the cinema when he was two, and a passion was born. In the darkness of the theatre there’s no threat or pressure from neurotypical folk expecting conversation and eye contact. The two-dimensional characters provide a safe way of accessing life experiences: our son can’t seek answers and information as others would by asking questions and sharing fears. The darkness and ‘front focus’ help reduce the constant overwhelming visual input that is part of his life: how can you attend to the ‘thing’ in front of you when your eyes are flooded with hundreds of images every minute from every nook of peripheral vision?

In spring 2012, when he had a vocabulary of approximately 15 words, Gabriel clearly said ‘Sparky’. We were excited that he’d said a word and was undoubtedly trying to communicate with us, yet we had no idea what ‘sparky’ was. We searched our memories and came up blank. Then one day I recalled, ‘Last month we did see a trailer for a Tim Burton film – there was a dog in it called Sparky, but it’s only mentioned a couple of times, and it was so fast, and we’ve only seen it once…’

‘Nah,’ my husband said, ‘can’t be.’

How much we have learnt since.

That one trailer was to seize Gabriel’s imagination like no other. How did we discover that ‘Sparky’ was indeed the endearing dog of Burton’s creation? Gabriel showed us. We went to the cinema and Gabriel ran to a cardboard FRANKENWEENIE placard and spent 45 minutes dancing, babbling, singsonging and beaming in front of it. Over several months we hotly anticipated the release of the film. With every poster, every Disney Store window display, Gabriel turned to us with animation and joy. He began to request ‘Sparky?’ for the trailer and, always, he’d turn to us and exclaim and dance and beam.

One night, having difficulty getting Gabriel to sleep, I sat quietly with him. Thinking he’d finally drifted off, I tiptoed away, only to be stopped in my tracks by the little voice that floated out of the darkness – ‘Something big is gonna happen!’ The moment was eerie and magical; tears filled my eyes and swelled my throat.

Many phrases from FRANKENWEENIE were to follow, and this was before we’d even seen the film! Gabriel made – ‘Turtle, dinosaur’ – a request for us to sketch Shelly the turtle’s transformation into a T-rex like monster. He started to tell us ‘Mr Whiskers had a dream about you last night.’ He learnt new words: bat, monster, sea monkey! And, amazingly, he began to role-play. We’d been told that ‘autistics’ lack imaginary capacity, yet our son took what he saw in the FRANKENWEENIE trailers, and ultimately the film, and began to apply it to his toys: play-sniffing, tracking, chasing cats, even dispensing kisses.

But the biggest moment was yet to come. It wasn’t Gabriel seeing his Sparky birthday cake on his fourth birthday and being utterly transfixed sparky cake– ‘Spaaaaarky!’ It wasn’t going to the cinema three times a week to see FRANKENWEENIE while it was out. It wasn’t him managing to go to nursery for two hours because he had a laminated picture of Sparky in his hand and another in his bag. It was the giant sign he gave us during our first viewing of the film.

We’d spent months digesting, assimilating and loving the FRANKENWEENIE trailers, posters and placards, so we approached the screening with the ecstasy of parents knowing they were giving their child The Greatest Gift Ever. It started brilliantly, Gabriel was spellbound, but then he started to scream and sob… Sparky had been hit by a car.

Tim Burton didn’t show us the car, he didn’t show us the corpse; we saw nothing but Victor’s reaction – a face of fear shouting ‘Sparky! Nooooo!’ And that was the moment that many clinicians and educators were proven wrong. We had been told ‘autistics can’t express empathy and have little or no sense of other,’ yet here, in his distress, Gabriel was clearly showing us otherwise. He has shown us the same countless times since, identifying with a film character to such an extent that even subtle bullying will reduce him to tears. The first screening of a film is always difficult (and this is where Autism-Friendly Screenings are vital), as Gabriel has yet to discover that the character emerges triumphant and safe.

FRANKENWEENIE sparked a magical trajectory for us, showing us the actual potential in our beautiful boy, rather than the deficiency that others perceive in him because he can’t express himself in recognised, neurotypical ways. It also has given us so many moments of unbridled joy and discovery that I don’t have the words to convey their significance in our lives.

Ultimately, FRANKENWEENIE is the tale of a boy who is different, isolated and misunderstood. The boy loses himself in film, and the adults find themselves as he shows them what love really is. In this way, and every other way, FRANKENWEENIE is the film of our lives.

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Please note: this post first appeared on the Picturehouse Blog after I was invited to contribute to it-the link to that, which also contains images, is http://picturehouseblog.co.uk/2013/12/05/frankenweenie-sparking-connections/ In addition, it also appears on film director, Tim Burton’s Facebook page-the link to that is
https://www.facebook.com/TimBurton

 

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A Kindergartener’s Short Definition of “Autistic” #AutismPositivity2014

By Kim

Screen shot 2014-04-28 at 10.14.58 PMMy six-year-old son, Will, had been very excited about his new Lego minifigure that he named Max. One day, when I picked him up from school, his aide told me that Will had been playing with Max and calling him “auto-tistic.” Even with his adorable mispronunciation, we could guess that Will was trying to say “autistic.”

I’ve talked to Will about autism, but I’ve never been sure how much he understands. He knows he is autistic and he has heard me mention other autistic people as well. But I had never heard him talk about anyone being autistic before. This was something new.

I asked him, “Buddy, what do you mean when you say ‘auto-tistic?'”

And Will replied, “Fantastic.”

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