Saturday, April 6, 2013

International Autism Acceptance Decade, 2010-2020

(Note: This is the same text as the page for International Autism Acceptance Decade. I am also making it a post so that people who don't click on the page will see it.)

Because so many people have said "Why stop with Autism Acceptance Day? Why stop with Autism Acceptance Month, or Year? Why not do a decade, a century?!", we are happy to announce:

International Autism Acceptance Decade, 2010-2020.


International Autism Acceptance Decade- Moving Beyond Awareness- 2010 to 2020


International Autism Acceptance Decade, 2010-2020, is an effort by autistic people to move the conversation about autism from awareness to acceptance. It is a multifaceted effort that will impact on autism advocacy, research, education, media, and culture. Although International Autism Acceptance Decade gets its start here, in order to be truly transformative, the work of many people will be required. This expanded Autism Acceptance initiative grows out of Autism Acceptance Day and Autism Acceptance Month. Those efforts  had their origins in the Autistic community and community of supporters. International Autism Acceptance Decade, 2010-2020 is also created by and led by Autistics. It is our hope that you will join with us to make IAAD a success over the rest of the decade.


Although  we are already in 2013, and three years have gone by, a number of significant advances for Autistic people started at the beginning of the decade.


-At the end of 2009, the autism prevalence rate was said to be 1 in 110. Autistics, responding to an increase in alarmist language, such as that in Autism Speaks' "I Am Autism," redoubled our efforts to make an impact on many levels. The Autistic Self Advocacy Network and GRASP were both instrumental in having the video removed from the Autism Speaks site. ASAN mustered over 60 disability rights organizations to oppose the video and Michael John Carley of GRASP held conversations with key personnel from that organization.

-In 2010, Ari Ne'eman, President of the Autistic Self Advocacy Network, was appointed to the Interagency Autism Coordinating Committee (IACC), joining Autistic IACC member Stephen Shore, and adding another important voice to the national dialogue about autism. In the same year, he was appointed as a full member of the National Council on Disability, adding Autistic voices to another federal agency. 

-In 2010, Autistics Speaking Day was started by Corina Becker and Kathryn BjΓΈrnstad. Autistics Speaking Day countered an event that  requested Facebook users to "shut down" communication to "show what it's like to be autistic."  They led autistic bloggers to raise their voices and say that the best way to understand what it’s like to be autistic is to listen to autistic people. Bjornstad and Becker received ASAN's 1st Annual Award for Exceptional Services to the Autistic Community at ASAN's fifth anniversary gala event the following year.

-In 2010, Autism Speaks finally appointed an Autistic person, John Elder Robison, to its Scientific Advisory Board. While Autism Speaks is hardly known for Autism Acceptance, and has even used the phrase "acceptance" to raise funds for a cure for autism, by 2010 the pressure was definitely on, and they had to at least try to appear to be listening to the Autistic community.

-Also in 2010, Temple Grandin's bio-movie came out, reaching a larger audience of people who previously were not aware of autism.

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-2011 saw a number of initiatives and a continuation of Autistic voices changing the conversation about us. Autistic activists countered a number of proposals that were developed without us, such as the ICD-9-CM "wandering code," a PBS special that stereotyped autism and Autistic people, getting Cafe Press to consider donations to ASAN or other Autistic-friendly advocacy organizations rather than Autism Speaks.

-2011 saw the first Autism Acceptance Day, which shortly turned into Autism Acceptance Month at the request of people who did not want Autism Acceptance to be one day only!

-An interesting series of dialogues between parents and self-advocates took place at Thinking Person's Guide to Autism (TPGA). Ten days of thoughtful and thought-provoking discussions took place. 

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-In 2012, the CDC came out with revised autism prevalence rates of 1 in 88.  People discussed the proposed changes to the autism diagnostic criteria in the new DSM 5. 

-The second annual Autism Acceptance Day and Month event was held and more people got involved. Steve Silberman, the science writer at PLoS Neurotribes, wrote a comprehensive article on Autism Acceptance Day. 

-In response to an alarming series of murders of Autistics, Zoe Gross and the Autistic Self Advocacy Network launched a series of vigils to mourn Autistics and all people with disabilities who have been murdered. 

-Fox News released a graphic video capture of a student at the Judge Rotenberg Center being shocked multiple times, and Occupy JRC  began an aggressive campaign to shut down the Center, which has been likened to Abu Ghraib.

-A number of books written and produced by Autistic people came out. The Loud Hands: Autistic People Speaking anthology, edited by Julia Bascom and produced by ASAN, and I Love Being My Own Autistic Self, by Landon Bryce, were two of the books that add to a growing genre of books primarily by and for Autistics.


-2013 has already seen more dedicated efforts to promote Autism Acceptance, with the advent of ASAN's new autismacceptancemonth.com website, A number of blog and Facebook pages posted series of photographs depicting positive images of Autistics, both children and adults, contining Autistic involvement and impact in research efforts, such as those by Steven Katz and AASPIRE. The rest of this year, and, indeed, the rest of the decade, will usher in permanent changes in the dialogue about autism, and from those changes will come real strides in both Acceptance of Autistics and in practical, real-life efforts to improve services and supports, and societal acceptance of Autistics as we are.

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Links, 2010:

Wired Science Interview with Ari Ne'eman

http://autisticsspeakingday.blogspot.com/ 

http://autism.about.com/b/2010/03/09/autism-speaks-appoints-autistic-self-advocate-to-board.htm

Temple Grandin http://www.imdb.com/title/tt1278469/

Links, 2011:

http://www.change.org/petitions/tell-the-cdc-no-on-abuse-enabling-wandering-code 

Autism Acceptance Day, 2011 Facebook Event

http://www.thinkingautismguide.com/2011/09/self-advocateparent-dialogues-day-one.html 

http://www.navigatingcollege.org/


Links, 2012:

CDC Says Autism is 1 in 88

Vigil for George Hodgins and Other Disabled People Murdered by Their Families

http://www.amazon.com/Loud-Hands-Autistic-People-Speaking/dp/1938800028 

http://www.amazon.com/Love-Being-Own-Autistic-Self/dp/0615731821

http://occupyjrc.org/ 

***TRIGGER WARNING Judge Rotenberg Center Torture Video

Links, 2013: 

autismacceptancemonth.com  









Friday, April 5, 2013

Less Awareness, more Acceptance!



April is just around the corner and we are facing a barrage of ‘Autism Awareness’ again. A good time to get something off my chest that I have been thinking about a lot lately.

Last year was the first time I’d ever heard of ‘World Autism Awareness Day’ and month. Naturally I thought this had to be a good thing, we all need to be aware as it affects so many of us. I spread the word, dutifully, thinking I was doing the right thing for my son and the autism community.

Well, a lot has changed since those early days, and I’m not so sure about that anymore.

For starters, I have learned that autistic people everywhere have come to dread April. They dread it because this campaign to spread ‘awareness’ seems to conjure up a lot of negative images about autism. The rhetoric is largely alarmist and negativ, sometimes overtly and sometimes not so overtly. There is talk of ‘increased risk’ of having a child with autism if you are too old/eat the wrong foods/(insert subject of personal guilt here) when you’re pregnant, of ‘epidemics’, of people being ‘afflicted’ and ‘suffering’ with autism.

It seems to speak to vulnerable parents of young children who find it hard to see the light at the end of the tunnel. I know, cause I’ve been there. Parenting 2, 3, 4 and 5 year olds comes with it’s own set of challenges. Throw into the mix developmental delays,
speech delays/non verbal-ness and the frustrations that go hand in hand with that, sensory issues etc, and it’s easy to get caught up in the struggle and worry of it all.


But, you see, the story does not end there. Children grow older. We all learn as we go along, our children do and we as parents do. We adapt, we grow, and things get easier. Autistic children grow up to be autistic adults. Autistic adults are everywhere, if you care to look for them.

They write blogs. They communicate. They know first hand what it’s like to be autistic, and we need to listen to them and take heart, because our children are going to be them in a few years. And how great! They are people living their lives, needing varying amounts of supports and accomodations, but nonetheless making valuable contributions to our society. They are people making a difference in our world.


As my son grows up he will start to realise about his own differences. He will be able to read up and find out about autism, and he will find out what the world thinks of him based on his autism.

So I need to think about what kind of message I want to send to him now. What exactly do I want the world to be aware of?
That autism exists? That autistic people are all around us? That there’s an epidemic? That it’s a problem? That something needs to be done about it?


So much of the information out there has a negative spin to it. And I have to ask myself, do I really want my son to grow up thinking that he is a problem, or a burden, that we, his parents, the people he trusts and relies on the most, have spent his childhood years looking to ‘cure’ him, to ‘reverse’ or ‘defeat’ his autism or to prevent people like him in the future? That he is somehow a less valuable member of society because he is autistic?
Hell no I don’t!


I don’t want him to ever feel that he is less than any of his peers. I do not want him to grow up feeling inadequate, isolated or crushingly insecure about his differences. I don’t want him to ever think that he is slow-witted or stupid because some things are a little more difficult for him than for your average person.

I want him to know that his autism makes him different, not less; that it isn’t something that needs fixing; that even when things are difficult and challenging, he is never a burden. I want him to know that I have never wanted him to be anyone other than himself, and that he is loved and accepted for who he is, always.

I want him to know his strengths, and I want him to be able to navigate our diverse world successfully whilst feeling secure enough in himself to be himself. I want him to be as healthy as he can be and to always feel supported and accepted, so he can be his best autistic self!

So that is why this year, I will be spreading the word for Autism Acceptance instead!

This post is a reprint. The original is here: http://diaryofachaoticfamily.com/less-awareness-more-acceptance/

Thursday, April 4, 2013

This is Autism Acceptance

This is Autism Acceptance






You might not have realised it if I hadn't pointed it out, but these photos are of Autism Acceptance.

Acceptance- the process or fact of being received as adequate, valid, or suitable

My MissG started Kindergarten this year. We did a lot of preparation for this, because MissG is Autistic and has Sensory Processing Disorder. We worked with the school to help MissG get used to the routines of the school, gave her practice being in the classroom, and moving around the school in a group, playing in the playground with lots of other kids darting around..... things like that. We focussed on her own safety by teaching her a procedure she could use when she is feeling stressed or experiencing sensory overload so she could go to a "hiding place" where she felt safe and could wind down a bit. We made sure she knew the ladies who work in the office because they are the ones who look after kids who need first aid. We made sure she was totally comfortable with The Principal because he would be the person who would intervene in an emergency. We made sure she knew who her classroom teacher would be and got to know her, so there would be no anxiety about who she would be with. [search "transition to school" using the search function at the top right of the blog if you want to read about the preparation we did]

We did all this with the willing help of the school, who showed us by their actions that they accepted MissG just as she is and are happy to welcome her into their school and do whatever she needs them to do to make school work for her.

And the school has continued to show that they accept MissG and do not expect her to change to suit them. I know this because of the conversations I have with her Lovely Teacher when we check in with each other to make sure everything is going well. I know that when MissG is struggling her Lovely Teacher makes sure she has extra time to process things, and that she is teaching the other kids in the class to do the same. I know that MissG's Lovely Teacher makes an effort to give MissG plenty of warning for transitions and when the usual routine has to be changed. MissG has her own special drawer in the classroom where she keeps some fidget toys and comfort items she can go to if she needs to do something to calm herself.

MissG's Lovely Teacher, The Principal, the Office Ladies and all the other staff in the school value my daughters uniqueness. They let her be who she is. They encourage her. They are proud of her achievements. The see her as adequate. They *accept* her.

I know this because of what happened at the Easter Parade. I posted the above photos so you can see it too.

That is MissG. Dancing. With a partner. In the middle of a group of about 80 children. To loud music. Without her ear defenders on. With a huge smile on her face.

See her? My Autistic daughter? Dancing! With a partner! In the middle of a group of about 80 children! To loud music! Without her ear defenders on! With a huge smile on her face!!

The same girl who 12 months ago could not go shopping with me without having to run away and hide to get away from the overwhelming sensory input. I stood and watched her in that huge group of kids, enjoying herself. Feeling safe. Being confident. And I cried. Happy tears.

I know that the school staff accept my MissG just the way she is because I stood next to one of the Office Ladies during the parade and she said she had been looking for MissG and was so happy to see her enjoying herself even in the middle of the bustle and the noise. I know that her Lovely Teacher values MissG just how she is because she was almost as teary as I was about how well MissG did during the parade. I know that the community we live in accepts my MissG just the way she is because a few people saw me with tears in my eyes and when I told them what they were for they cried happy tears too. They put their arms around this Autism mum and they shared my joy.

My daughter has found a place where she feels safe enough to just be herself and dance.

This is Autism Acceptance. 


This post is a reprint from http://amazingadventuresautism.blogspot.com.au/2013/04/this-is-autism-acceptance.html

Sound of Rain- Fiction by C. Kramer



Sound of Rain
C. Kramer

Hands against the foggy glass, Ian looks out watching the drips cascade down the bay window in his apartment. Slowly falling, the rain makes the sandy hair boy laugh as lightening dances in the surly clouds. He pulls away flapping his hands and rubs them on his face. A celebration of some sort, one that his lover never truly understood but empathizes in a way. Ian flapped again bouncing on his toes, swaying to the rolling roar of the thunder. A May storm always gives him such delight. A fixation that Mattie let him indulge him in once in a while; ridged schedules, planning things in advance, and a life of routine left their lives little room for things like spontaneity. Mattie couldn’t always go parties he was invited too, he left work early sometimes to deal with incidents. His life has been route and organized. All to keep Ian at peace in a sea of noise and faces, if one thing goes out of balance. There was chaos.

And people do ask: “Why do you even bother?”

The answer wasn’t simply “because I love him”, though that is part of the answer. For Matthias Shepard, life was as sea of noises and faces too. There was no reprieve for him; he went through life feeling though the ocean of emotions and thoughts constantly drowning in them. Every day, he was drowning and on one cold January evening, that is when he found an island. Ian Farthing was that island. A man who spent his life living with siblings, parents and at one point in a men’s home; never really having a place of belonging. He was a burden to some, a liability to others, but Mattie saw him differently. Telepathy with a secondary talent of empathic awareness, are heavy weights to wear. And since people never shield, he was always privy their intents, to their feelings, to their secrets. It was maddening for Mattie. Ian being autistic was relief from that. His mind functions so differently that picking up emotions was foggy and hard to pin point and telepathy was equally hard. His thoughts were various word-pictures, sounds, smells. They were in differently complex patterns that are hard to cipher though. It was perfect peace. He wasn’t open and naked like the others. He wasn’t a pulsing mass of ethos. Finally Mattie found someone that he could truly get to know, talk to, and discover.

Ian found peace with Mattie. Shoved aside by family members who saw him as a non-person; Ian found himself with little control over his life. It wasn’t until his sister Jane saw his landscapes, and then people started to care. Not about him, of course not. Just of what he could produce. Rich and vibrant fields, busy streets and stormy evenings; the latter is his favorite. Watercolor was his medium of choice and spent many of his days holed up in his room painting. Only eating when made to and only leaving the room when he had to piss. Ian spoke to his sister in the same short clipped voice explaining in great detail what he trying to say in his paintings. He went on about techniques and new methods, watercolor vs. gouache and things that Jane couldn’t give a damn about. But he made money. And greed was strong in her. So against his own needs, she made him do tours, sell in pricy galleries and showcases, dragging him around like a dancing poodle. It was that January when Ian was showing his watercolor paintings in gallery opening, the one that Mattie was at.

Swaying side to side, Mattie found a shaggy hair main with wide rectangular glasses staring at a painting of a sunset from a roof top. Mattie was drawn to him, while trying to escape the environmental noise and the psychic noise too. It was quiet where Ian was. Surprised, Mattie stood next to him. Pushing back his long black hair he took a sip of the chardonnay and started a conversation.
                “Nice contrast, I like how the red bleeds like that against the start black.”
                “Oh.  Thank you. Took me months to get that,” responded the swaying man.
                “You’re the artist? You’re Ian Farthing?” Mattie raised an eyebrow and turned to Ian with a fascinated look he is so….silent. I can’t pick out any outward resonance from him. It’s like he turned off or damped his emotions. I can’t pick them up. Mattie offered his hand to Ian, a smile forming on his tanned face.
                “Matthias Shepard, it is an honor to meet the talent behind these paintings.” Ian carefully shook his hand. Mattie’s hand swallowed the clammy artist’s, and he had to actually concentrate for once to pick up a resonance. He hates it here, he doesn’t want to be here I get those emotions, but his thoughts there are, images, some are words…but I can’t translate them right away. This…this is incredible. He’s a Dampener. Those are hard to find. Shaking his hand for a moment, Mattie turned back to the painting.
                “Does it mean anything?” he asked, Ian’s response was simple:
                “It was just a practice piece using some new tubes, but I guess people can stick whatever meaning they want to it.”
                “It looks…somber almost. Like there is a kind of dinginess to it, but seriously; what does it mean to you?
                “It’s isolation. Feeling of being cut out from society. The roof has nothing on it, it’s bare and void and sun as its setting casting a glow to it; almost if it’s judging it.”
                “Do people judge you Ian?”
                Ian looked at Mattie with a hurt look, “Of course. I am autistic. Of course they judge.” Mattie was going to probe deeper when a stern blonde woman walked up to them. She ushered Ian way saying that some folks wanted to buy a piece from him. Mattie looked at the title of the painting that they were discussing. It was entitled: Scathing Glare.


The months that followed ebbed and flowed. Mattie spent evenings visiting Ian, at his studio. Bringing meals to him when he forgot eat. Watching him paint and the conversations dripped down like steady rain. Mattie explained to him that he was only child, and grew up rather sheltered. It was only when he hit middle school things began to change. His psychic powers manifested and nothing was ever the same after that. Ian seemed interested about it. He has met some “psychics” in his life. Most of them were just empaths that were good at cold reading. True telepaths were hard to come by and meeting one for real, was quite an opportunity. Ian started to feel a strong connection to Mattie after spending several evenings, and afternoons with him. He started to take more breaks from paintings and started visiting him at his clinic where he practiced. He made an effort more to try new things and slowly Mattie watched him come out of his shell. He was vibrant and exuberant about everything. Paintings of Ian had richness that Mattie noticed more. Real happiness, and as the months that followed from carefully nurturing the relationship that they have sowed together, the happiness flourished.

Getting Ian off of Jane’s hands however was not simple as Mattie thought. Before Ian moved in, Jane struggled to keep Ian for herself afraid her little hen will not lay any golden eggs for her. Yet Ian convinced her that he can give her some of his money he made from commissions and galleries to her once a month. Deal placated her, and without that complication, Mattie and Ian can begin their lives together.

It wasn’t always perfect. Mattie knew what was he was getting into with having a relationship with an autistic. The beds have to be always made or Ian will rant and be surly for hours. If they were late for a gallery show or a meeting or anything, Ian will panic. Mattie was patient and rational but even his own patience was tried when they got into spats. Mostly out of miscommunication than malice. Explaining things over and over was exhausting. Still despite the rough spots in their relationship. Things sometimes seamlessly flow together. Ian was tirelessly observant, Mattie often comes home late and dinner would be prepared for him. Small paintings of flowers and fresh fruit will be in his briefcase and the simple peace of them just together in the apartment was fact enough on how much it was worth it. Living with Ian took effort but all good things take effort.

In Ian’s case, Mattie was also a challenge. Like autistic symptoms, psychic powers also have its set of inferences. Ian can tolerate crowds as he was use to them in the gallery parties. Mattie can only tolerate them for an hour or so, before he started to break down and hide to escape the constant sea of resonance. Movie theaters were out of the question. Mattie had a hard time eating out too. Because even the food has resonance and nothing killed the mood more than trying to eat a steak with the sound of mooing and the crackle of static from a stun gun(One of the reasons Mattie often went vegetarian). So it goes without saying that eating out was once in a while and only if Mattie wards from various resonances and impressions. When Ian had enough of people and the mask of “normalcy” falls off; he shuts down, rocking back and forth and hands over his eyes. He will scream and try to run away. When Mattie gets over loaded, he gets violent. He made damn sure never to show that side to Ian. Until one afternoon…

It was another gallery show outside of town at someone’s property. It was warm and bright and Ian was more involved with the guests than use to be. Shaking hands and showing them some of his new pieces. Mattie was oddly more worn that day. Quiet as he followed his lover behind him watching with proud but tired expression on his face; happy to see him so social for once. He took a beer from the cooler and walked outside to get a break from the party and drank on lawn he found himself wandering to an area outside of the man celebration when felt a wave of psychic energy. He furrowed his brow as he touched a hammer that lay in the grass next to a tree stump. A sick feeling welled up in Mattie as he rolled his eyes back seeing an image two men beating the shit out of another man. Words and slurs were being thrown around muddled with the hazy image. Mattie choked back his nausea as the boy who was probably gay was beaten by two men, high school age. Dropping the hammer Mattie staggered back, beer left in grass by the weapon. He had no idea if the boy lived, or not. He didn’t stick around to find out. His own mask dropped off as he stormed to the car not noticing that Ian was behind him. His grey eyes filled with concern.
                “Mattie? What is wrong, you lo-“Mattie whirled around to strike whomever was behind him, but Ian caught his fist. Grey eyes now filled with deeper concern. “What the fuck happened? What did you see or pick up?”
                “Back off Ian, I just need space.”
                “No you’re going to calm down first. You’re seething, what happened?” Ian was insistent and didn’t let go of Mattie. Both of them looked back for a second before getting into the Jetta.
                “I picked up something in the back of the place, some kid got beat to shit.” Mattie admitted rubbing his face.  “We need to go now. We can’t be here.”
                “Do you want to tell the police or something?” Ian tried to help.               
                “No I just want to fucking go! I am tired to death of being here.” Snapped Mattie
                “Mattie we can-“ Mattie fell into the resonance loosing himself to the impressions he found. Everything feel away from him nothing was stable or real anymore as he found himself looking into the eyes of the boy that was beaten, Ian didn’t even finished his sentence when Mattie let out a deluge of words anger flavored them like hot sauce. Ian couldn’t process them fast enough but without thinking, he grabbed Mattie’s shoulders and forced him to look at him.
                “Stop! Breathe. Now. Push back the onslaught. I am gonna talk to the host, I am gonna get to the bottom of this. We will go home, get out of the ocean Mattie you will drown.” Ian solid words, and own dampening ability stopped the resonance from continuing. Mattie took a breath and managed to put himself back together.
                “Right you do that Ian. I am going to chill out here for a while ok?” Mattie said wearily as Ian slowly got out of the car and walked back to the house. Mattie rubbed his face as tried to hold on his mind. He needed Ian more than Ian realized.


Bringing himself out of that memory he watched Ian rocked to the sound of rain and heavy thunder. Mattie got up from his seat in the living room and put down his laptop. Coffee in one hand and idea in his head he got Ian’s attention.
                “Hey, Ian c’mere.” He said as he put his coffee down. Ian laughed and joined him in his favorite chair looking outside the window, still engaged to the conversation.
                “Something on your mind?”
                “Yeah Ian” there was a pause, “what do you think about the phrase ‘high functioning’?”
                “It makes no sense honestly, but in what context?”
                “What about in the autistic sense?” asked Ian sipping his coffee letting the mellow flavor relax him as Ian took his time thinking.
                “I still think it makes no sense. I am only considered high functioning because I can talk, but most folks look at us and they don’t see a gay couple. Most people think you’re my brother and get shocked when I kiss you in public. Rest of the word sees me as, semi-functioning or something. They notice my disability and see it as a flaw. You’re not even high functioning at all and they call your disability a god-damn gift.” Ian rambled.
                “You don’t think I am ‘high functioning’?” laughed Mattie.
                “Generally, you can pass. But I know you struggle daily to keep from falling into whatever resonances or psychic entropy you find. You get sick and you tire easily. I take care of you more than you take care of me Mattie. I mean. I don’t want to seem like I am complaining. This is just my-“
                “Observation, I know,” finished Mattie, “I know you’re not trying to be hurtful. So many people see the relationship as one sided. Some even think I am taking advantage of you, but you’re right Ian. It’s the other way around. Sometimes you get lost in environment yourself. Sound drowns you but you always manage to bring yourself out of it. If I start to drown, I can’t seem to pull myself out.” Mattie drank his coffee quiet now.
                “The sounds of rain Mattie, people hear the rain and are calmed by it. But when I hear it I am driven. I want to rock, flap, dance, spin in circles. We all respond to the world differently. I don’t think that means you’re a high functioning psychic or low functioning one. It means you respond to the sound of rain differently. I can’t tell you how to dance to it. But one day, you will find your rhythm to it.”

-End



Wednesday, April 3, 2013

Autism Is Awesome: Why Awareness Won’t Cut It




This post is a reprint from Tim Villega's blog. The original can be viewed here:

http://www.thinkinclusive.us/autism-is-awesome-why-awareness-wont-cut-it/

awesome

Why in the world would I say that autism is awesome? MY goodness…of all the words.
If you don’t believe me…look up the word.  This word describes everything from the sublime to the daunting part of autism and how it affects individuals and families. It encompasses the hope and fear that we grapple with as well as the inspiration and genius of autism.

Today (April 2nd) is a very important day in the autism community. In 2008, the United Nations designated April 2nd as World Autism Day to raise awareness of the need to improve education, career opportunities, and community services and supports for Autistic individuals. (For a short summary of the history of “autism acceptance” events click here) But for all of the awareness…where has it left us? Since then…autism awareness has “blown up” (as the kids like to say these days). Here is an excerpt from something Steve Silberman wrote about this very topic:
Our society is not only “aware” of autism, it’s obsessed with the subject. Unfortunately, though, this obsession is often misdirected. Instead of worrying about what families of autistic people are supposed to do when the services and support devoted to children run out after high school, or how autistic adults themselves are supposed to lead happy and productive lives without access to employment and health care, we perseverate about the latest theories of autism causation. Did you see the news that older grandfathers may contribute to autism risk? Have you heard the rumor that living near a freeway is somehow related to autism? Did you see the thing about mothers who take antidepressants or fail to take folic acid supplements? Have you read the story in the New York Times about that new inflammation theory? It’s enough to make young couples think twice about having a kid at all.”
Currently the autism rate, according the Centers for Disease Control (CDC), is 1 in 50. There has been plenty written about this and what to make of this rise in prevalence. Everything from “we’re getting better at diagnosing it” to “there is an autism epidemic“…and I encourage you to read all of it. In fact, there are many of my friends and colleagues that fall in one of these two camps. A number of them will change their Facebook and various social media avatars and “light it up blue” and still others will follow with “autism acceptance” avatars.

So…what I am getting at? A few things I would like for you to consider as you mull over the plethora of information that you will undoubtedly encounter this “Autism Awareness” April.

1. Who would be a better source of information about autism? Who are the true “experts” about autism?

2. Would it not stand to reason to examine what self-described autistics had to say on the matter of “autism awareness”? Does the fact that certain people with autism who are able to communicate via typing or other modes relegate their opinion to the sideline? Doesn’t their voice matter?

3. If inclusion is really our aim…why would we not include, in a meaningful way, autistic people in the planning and implementation of “awareness” events? In fact…there is even a pledge that you can take to do just that!
Just so we are crystal clear…I am in no way saying that having a child with autism is somehow always simply wonderful and the easiest thing in the world. What I am saying is that with any challenge (insurmountable as some are) in life we can take it different ways… I believe as Terri Mauro points out in her piece about disablism:

Parents of children with special needs often feel, I think, that there’s another child just like the child they have — one that’s been stolen by disease or disorder, or one who’s just awaiting release. If we love that child, the one we imagine to be our true child, are we betraying the child before us? If we love the child before us, are we betraying the one trapped somewhere in another universe? If our child is suddenly easier to handle, quick to blend in, different in some hard to identify but fundamental way, do we celebrate that or worry about what was lost? (And if we could punch a hole in the universe to save our alternate child, as another Fringe character does, would we cross that line? Would we risk the lives of other children to try to put things right afterward? How could we? How could we not?)

[I apologize if the Fringe reference is out of left field...you need to read the whole post for the context]

I believe the choice is to love. To love as absolutely best we can. This goes for parents…educators like myself…and for people with autism. My sincere hope is that when we love a person with autism…we love them for who they are…not their potential…not their non-disabled “other universe version”…not in spite of their autism…just for being them. This is why awareness just won’t cut it. It is time for acceptance.

Autism Acceptance Day/Month



I used to participate in Autism Awareness Day.  This is the first year that Canada is participating in the U.N.  Autism Awareness Day.  I now participate in Autism Acceptance Day/Month (click on the link to see the origins). 


It seems like this day has been taken over by a large fundraising, research organization.  All of the fundraising, Light It Up Blue initiative, advertising etc. makes it seems like Autism Awareness Day should be called Autism Speaks Day.
Over the past year or so, I have been pulling away from the whole Autism Speaks thing.  I have learned a lot by reading blogs of other autistics and supportive advocates.  I have always accepted my autism but haven’t completely understood everything about how it affects me.  I still don’t understand it all. 


I do not want a cure for my autism.  I would never have an amniocentesis to see if my fetus had autism either (whenever that test is developed or hopefully it won’t be!).  Just as I never did when I was pregnant with my daughter to check for Down Syndrome.  If our child was born with a disability, so be it. 
It turns out that our daughter was born with a disability-autism, the same as me and my husband.  When she was diagnosed, it was a relief to know why she is the way she is.  It’s not a bad thing, it just is.   Sometimes I ask her why she has done, said, or thought something, and she will say “because I’m Micah”.  She does things the way she does things just as I do things the way I do them.  It’s not bad just different.  There are times when she or I want to do things the same way as other people but other times we do it our way whether other people think it is right or not.  We have always encouraged our daughter to be herself.


Accepting her as she is does not mean not helping her.  She has had a lot of occupational therapy, mainly to help with sensory integration.  She also has other therapies to teach her to how to ask for help or other things but they were done in a fun way through play and not sitting still at a table with her hands still.  She used to fall off her chair regularly because she was so squirmy and couldn’t just sit.  I think it was too much just to sit and eat dinner.  As she has gotten older she is more settled and we allow her to read while she eats so now she just sits and doesn’t fall off the chair anymore.   Some people think it is rude to read at the table but that is what she needs.
The therapies we have done do not change who our daughter is but help to give her the skills that she can use to get her needs met whether those needs are written down or spoken.  We have written in her IEP that she is not to be forced to give eye contact.  If she is comfortable with you, then she is able look at you depending on what else is happening.  I am the same way.


Again, I wouldn’t take a cure for my autism but I do need support in the areas I struggle with.  The problem is that those supports don’t really exist except for a few places where you have to pay a lot of money, especially if you need long term support with different things.  We are not rich.  We get little bits of help every now and then but we put most of our resources into our daughter so she can grow up to be as independent and happy as she can be.
A very large autism organization gets loads of fundraising dollars especially at this time of year but most of the money goes to research on how to prevent and cure autism so there won’t be autistic “burdens” anymore.  If they really want to help families, they could spend the funds on support for the autistic person in the ways that the person needs it.


Many people are “aware” of autism.  What is needed now is acceptance that autistics exist and always will; that we need jobs, healthcare, respect, love, happiness, and understanding.




 
This is a reprint. The original can be viewed here.
Autism Acceptance Day/Month

Why Is So Much Division and Anger in April?


By Karla Fisher.
Yesterday AM most of the Autistic Adult community and its allies were fighting for a life. Literally fighting for a life. At the same time, the rest of the world continued unaware. You see, it was the case yesterday that yet another disabled (autistic in this case) person was denied medical services due to the perception that a disabled life is not as worthy as a normal life. Through our combined efforts the hospital finally responded and offered this person the service.

This is the type of work that we (in the Autism Advocacy community) do on a regular basis. Most of us are tightly networked with one another behind the scenes of our pages. We watch the landscape carefully to find the right targets for our work. We respond to pleas of help from parents, caregivers and each other. We are a community tight and true. We have deep love and respect for one another.

Yesterday was especially hard as the person's life we were fighting for was one of our own. I had tears in my eyes and a lump in my throat all day. But beyond that I had fear in my chest. A fear because I knew that one day, this could also be my life that is in danger. I have been denied services in hospitals already many times due to my Autism. I am dismissed as crazy or badly behaved. I am fighting a medical bill and collections today due to one of the incidences last year in fact.

When we fight strongly and passionately against the messaging that happen during this month of April, it is because we are scared. Because we know that as long as the world sees us as burdens or dangerous we all are at risk for this sort of discrimination. Many of us live it today.
This post is originally on  Karla's ASD Page. The image is here.

Tuesday, April 2, 2013

Light Up My Blue Suede Shoes

This post is a reprint. The original is here:  Light Up My Blue Suede Shoes



Light Up My Blue Suede Shoes




Thanks to TJ Mertz for alerting to this image!



I've been Elvis-Sighting blogging since mid-2008.



The United Nations first celebrated April 2 as World Autism Awareness Day in 2008.   This April makes five years of Autism Awareness Day/Month that I've blogged through -- and mostly ignored.  Flipping back through all those Aprils, I've not once used the phrase "Light It Up Blue" for autism.



It's not that I'm opposed to autism awareness.  By all means, let's be aware!  



But let's not be scared, or scare-mongers.  And let's be aware of what people on the autism spectrum are saying about themselves, their lives, and what would make this world a better place.  (Hint: there aren't a lot of light-it-up-blue fans on the spectrum.)  And let's not get stuck in awareness as the be-all and end-all.






There are changes in the wind, when it comes to Autism Awareness / Autism Acceptance.



Adults on the autism spectrum are leading the way -- the Autistic Self Advocacy Network (ASAN) has been promoting Autism Acceptance Month, and there's been some magnificent (and searing) blogging going on.



And those efforts are beginning to echo among other autism-related organizations as well.



Here's what the Autism Society of America had to say on Facebook yesterday:

IT'S NATIONAL AUTISM AWARENESS MONTH! Please help share our message far and wide this April. We must begin to change the national discussion on autism and other developmental disabilities to full acceptance, value and dignity for all who live with autism.
And here's a 2013 Autism Awareness Day quote from Ban Ki-moon, Secretary General of the United Nations:

Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential... 

Let us continue to work hand-in-hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.
I'm glad that 2013 is the year that Elvis.com decided to get in on the act with Photos of Elvis in Blue for Autism Awareness Month.

No blue puzzle pieces on this blog... just Elvis Sightings, blue suede shoes, and celebration of how far we're coming, while recognizing how far we still have to go.

Autism Acceptance, by Lisa Richard

My whole life I have been led to believe something is fundamentally wrong with me. I have been labeled time and time again. At the age of four it was High Functioning Autistic, at 14 it was Aspergers Syndrome and at 19 it was Bipolar. I've been called spoiled, out of control, a menace, a drug addict, a people user, a loser and just an all around bad person. My whole life I have had pills shoved down my throat and doctors thrown in my face. Now at almost 26 years old I've found a community that not only understands every trial and tribulation I have experienced but has been there too. I am on the spectrum and now I can see it something to be proud of. My whole life people tried to make me conform to fit the mold society expects from its citizens but not once has society ever stepped back and said "How can we conform to make you feel welcome?". I am not a disease, I am not a mistake. I am unique and strong like so many before me. I am intelligent and devious. Brilliant and flawed. I have Aspergers Syndrome and I don't need a cure. I don't need a day to remind me to be aware because every day I am reminded of my struggle to find a place in this world that was not meant for people like me. But this year I have come to find there are others like me, and we're taking our place in society, one step at a time we are making our voices and feelings heard. No longer will we lie back and be treated like less than equals. Our numbers are growing, not because of a flaw in the system, not because of poisons or environmental factors but because today instead of locking us away never to be seen or heard from we are diagnosed and embraced and we will stand together and we will fight to be heard. The verbals will speak for our brothers and sisters that cannot and we will not dismissed. This is a war that will be won. We are your neighbors, your friends, your family, your children, your heros. We are NOT Rainman, we are Einstein, Newton, Bill Gates. On this day that makes the world aware of what we fight with everyday don't look at us with pity, don't hold your head down with sadness at what you as a disability because that is not what we need. We need acceptance and love, understanding and patience. We DO NOT need a cure, we need a world that isn't always looking for a magic bullet to make everyone a cookie cutter image repeated over and over again. I am proud to be on this ever increasing spectrum every single day and I will never again be told that the way my brain functions is flawed or broken. I am who I was meant to be and I will not stand for ignorance any more... Thank you for taking the time today to think upon the message of Awareness but please don't forget about it tomorrow or next month or next year. We live with everyday and so should you. "Sickness will surely take your mind where minds can't usually go, come on the amazing journey and learn all you should know."