Thursday, November 1, 2012

Why I can't speak as Autistic, yet

Happily Clueless writes Why I can't speak as Autistic, yet on Happily Clueless


On Monday I will start my new job, as regular employee. It is a great milestone for me, and I am proud of my successes in the working world, however small they might be with respect to those of my peers (my grad school classmates, for instance). It has been quite hard for me to achieve this, not only because of the dreadful situation of the job market, but also because I perform poorly at interviews (especially the “group” kind) in spite of my knowledge and experience. 

Every time I applied to a job, part of me wanted to say that that I have Asperger’s and to have an opportunity to get through the interview process that is equal to that of my peers, I need some adjustments. To tell the truth, I don’t know what adjustments in particular - maybe some quiet time between an interview and another, or to know a bit more in detail what is going to be evaluated. I just know that after talking with anybody for one hour or so I can be completely exhausted or even feverish - I have to admit my weakness that I can’t physically go through a day of interviews and small talk. 

No Safe Spaces

Bridget Allen writes No Safe Spaces on It's Bridget's Word

Trigger Warning for hate speech



I needed a break. The transition to homeschooling my kids led me beyond tired into exhaustion. I needed a few days to recharge. So last week, while my husband had business in Austin, I decided to come along. I had some trepidation about a trip with other people, but I knew they would be in conference sessions all day, and besides these were guys I knew. This was a safe place.

Except, there really is no such thing as a “safe space”, and words hurt.

The words that hurt the most are the ones that go by without comment.


Nightengale Autistics Speaking Day, 2012

Autistics Speaking Day, 2012 by Nightengale on Nightengale of Samarkand LiveJournal


A few years ago, someone proposed to raise autism awareness, a sticky topic in and of itself, by asking people not to use social media for a day. The idea was that avoiding a form of communication would promote empathy for autistic people who can't communicate. It's not clear if any actual autistic people were involved in creating this idea, although Temple Grandin's name is mentioned as a supporter.

Corina Lynn Becker, an autistic adult, proposed an alternative. Pointing out that social media can be an empowering form of communication for the autistic community, she conceptualized complete communication shut-down for neurotypical people, joined with an online media blitz created by autistics themselves. Thus was Autistics Speaking Day born.

Because there are definite communication challenges faced by autistic people. Some have no reliable method of communication. Some are non-verbal but communicate by typing, signing or other alternative methods. Some have communication abilities which change dramatically depending on circumstances. Some of these communication challenges can be improved, or their impact lessoned, through therapy, technology or creativity. Some can't, or at least, we haven't yet found a way to improve them.

But there is another communication issue which faces even those autistics with relatively strong language skills.

Because communication does not occur in a vaccuum. If I start talking right now, sitting alone in my living room, I am talking but not communicating. I can exercise the full extent of my vocabulary, modulate my voice and pay meticulous attention to grammar and still not have communicated anything whatsoever. My typing for the past hour is not communication until I press “POST” and someone else stops to read. The catchphrase is “communication partner.” It takes at least two people to communicate, whether the method be oral, signed, typed, pictoral or otherwise. And many autistic people lack willing communication partners.

In the past week, I've read about a panel about autism being held at a Sci-Fi con which has not invited any autistics to speak. And I've read attempts to silence an autistic person who questioned this decision, rather than to recognize the mistake and seek out an autistic voice.

In the past week, I've read about a conference being held on autistic self-determination which does include autistic speakers. However, it offers registration merely to "Parents" and "Professionals"

In the past week, I've read an article about the impact the new autism diagnostic criteria will have on the parents and caregivers of people with autism, without ever mentioning the impact on actual autistic people.

None of these situations exist because autistic people cannot participate on panels, attend conferences or give quotes for newspaper articles. Some autistic people can do those things, and some can't.

These situations exist because autistic people are assumed to be unable to participate on panels, attend conferences or give quotes for newspaper articles, and in some cases, are actively thwarted in their attempts to do so.

And yet I've seen a glimmer of hope. I've seen a conference where "person with autism" is one of the registration options. I've seen a conference where non-verbal autistic people were able to participate, due to a combination of technology, support workers and a willingness of the audience, autistic and neurotypical, to become partners in this less familiar form of communication. I have seen articles about autism which actually quote autistics.

And all over the internet, I see autistics communicating. With each other, with parents of children with autism, with other interested neurotypicals.

So communication can happen. Verbally, electronically, pictorially, communication can happen. It's just far too rare. And it takes too much fighting. And the ultimate irony is the proportion of that fighting which falls on the shoulders of those who have neurologically based social communication challenges.

In a few weeks I am giving a talk to a group of pediatricians and trainees about the health needs of children who have autism. And in addition to giving medical statistics and information about community resources, I plan to quote autistic individuals whenever possible. Because we need to normalize the idea that autistics should be involved in conversations about autism. To borrow a phrase from biology, having a voice (verbal or otherwise) is necessary but not sufficient. It takes two to tango. And it takes two to communicate.

Autistics are speaking. Why is it so hard to get others to listen?

And with that, I'm going to go listen to a range of autistic voices over at Autistics Speaking Day 2012

Changing The Odds

Adkyriolexy writes Changing The Odds on Kyriolexy


Most of the terminology commonly associated with Autism Spectrum Conditions is undeniably degrading and dehumanizing: disorder, illness, regression, disease, suffering, impairment, low-functioning, broken, damaged, confined, relegated, trapped. However, terminology associated with a “positive” view of autism can, in its own way, be equally degrading and dehumanizing: special, high-functioning, progress, milestones, angels, speaks so well, beating the odds. These are offensive for the same reason the more blatantly negative terms are offensive—they reduce autistic people to one or two characteristics, deny them the full spectrum of human traits, define them primarily by the effect they have on the non-autistic people around them, define “progress” and “functioning” by degree of similarity to neurotypical norms, and presume incompetence through the soft bigotry of low expectations.
“Beating the odds” is particularly disturbing upon closer examination. It’s rooted in the premise that most autistic people are incapable of success at anything at all, so any achievement of any autistic person is rising far above the average autistic’s capabilities—even when, statistically, it makes no sense (most autistic people learn to speak at some point in their childhoods, so an autistic child’s gaining speech is perfectly in line with the odds). Perhaps more disturbingly, the “beating the odds” narrative presents all of the obstacles to autistic success as permanent unchangeable barriers. The odds are what they are; the individual’s duty is to beat them.
Of course, by definition, we can’t all beat the odds. That’s part of the narrative, too, the competition. There are a very few “successful autistic person” slots available, and one person’s success necessarily means another person’s failure. Nevertheless, we’re supposed to keep striving for those coveted slots. Working ever harder, sparing no effort, no expense. “Beating the odds” comes to be like outrunning the dragon, with all accompanying desperation, terror, obsession. We must beat the odds.
The “beating the odds” narrative is in contrast to another narrative, one of changing the odds. While a “beating the odds” narrative casts social conditions, including vast inequality of opportunity, as immutable, perhaps even as a decree of nature, a “changing the odds” narrative views social conditions as created by, and able to be changed by, humans. The number of “successful autistic person” slots can be expanded. Obstacles and barriers to success can be reduced or eliminated. Overall resources can be distributed more evenly, such that the success of one need not necessarily involve the failure of another.
The two narratives hint at underlying differences in philosophical worldviews, which have broad implications in education, business, child-rearing, medicine, and public policy. And there’s no doubt that “beating the odds” is the prevailing narrative. Adherents are very reluctant to part from this narrative, even when it falls apart on examination. As Jessica Hagy summarized the dominant view within education, “Everyone can join the top 1% if they do well enough in school and ignore the basic math problem inherent in that idea.”
In the context of disability, the “beating the odds” and “changing the odds” narratives broadly correspond to the medical and social models of disability. The medical model presumes that social norms of behavior, external expectations, and the policies of institutions (such as schools and workplaces) are an objective standard against which a disabled person can be measured. The only hope for a disabled person is to receive sufficient medical treatment as to overcome his disability and become normal, thus beating the odds. The odds are constant; the individual is variable. The social model recognizes that institutions, attitudes, and social norms are also variable. The individual does not necessarily have to change himself to beat the odds; the odds themselves can be changed.
Why does the “beating the odds” narrative resonate so much more strongly than the alternative? Perhaps because it appeals to the competitive spirit, or perhaps because it sounds more realistic and attainable. Changing an individual seems easier than changing an institution. Perhaps people favor the supposed objectivity of standards which favor themselves. But those who are placed at a disadvantage by those standards surely have a right to question them, particularly when they violate basic math or basic logic. The essence of autism acceptance is not the sponsorship of treatments to help individual autistic people beat the odds; it is to change the odds for all autistic people. Autistics Speaking Day should be an exercise in changing the odds. Autistic voices should be the default, not the exception, in discussions of autism. For the benefit of all involved, it is well past time to advocate a change in odds of the following circumstances:
    An autistic student receiving the same quality of academic instruction as his or her neurotypical peers;
    An autistic person becoming his or her own guardian upon reaching the age of majority;
    A nonspeaking autistic person successfully communicating with others through writing, sign language, or other means of augmented communication;
    An autistic adult choosing whether, when, and with whom to undertake a romantic relationship or life partnership, and deciding the terms of such an arrangement;
    An autistic job applicant being evaluated on his or her ability to perform the tasks required, on an equal basis with neurotypical applicants;
    A spokesperson purporting to speak for the interests of autistic people being an actual autistic person;
    A panel or committee purporting to address autistic issues having an autistic majority;
    An autistic person exercising freedom of movement;
    An autistic person exercising freedom of association;
    An autistic person living where he or she chooses;
    An autistic person being happy with his or her life;
    An autistic person pursuing a career or vocation of his or her choosing;
    An autistic person being included as a fully-participating equal in a social setting;
    An autistic person speaking for him or herself.
The goal of the autistic self-advocacy movement should be to change the odds of all of these occurrences to be as close as possible to one.

I am Autistic and I am Tired

I am Autistic and I am Tired by Steve Summers on Facebook

Today I feel tired. --
Tired of being rejected.
Tired of being ignored.
Tired of being excluded.
Tired of being treated like an outcast.
Tired of being treated like a misfit.
Tired of feeling like others look down on me for being different.
Tired of being expected to try and act 'normal' to have a 'normal' life. -- I am not 'normal.' I am Autistic. 
Tired of people who think that just trying harder will make Autistic people 'more normal.' -- Would you tell a blind person to try harder to see? Would you tell a paraplegic to try harder to walk? Would you tell a colorblind person to try harder to see the colors that they can't see? 
Tired of people who don't understand Autism and who don't make any effort to learn about Autism so that they can cure their own ignorance.
Tired of people who refuse to accept Autistic people just as they are. 
Tired of people who presume incompetence. 
Tired of neuro-bigotry. 
Tired of the silence of others. Silence is *not* support. 

Want to help us? -- 
Listen to Autistic people.
Make an effort to learn about Autism.
Educate yourself about what we go through each and every day. 
Learn about how negative attitudes make us feel.
Practice Autism Acceptance.
Accept that we are different, not less. 
Accept that we are different, but *not* defective. Don't try to make us into a poor copy of your idea of 'normal.' 
Accept that we are okay to be ourselves -- just as we are. 
Accept that we are  humans with feelings just like everyone else.
Accept that Autistic rights are human rights.  
Presume our competence. 
Don't avoid us, include us. 
Most of us have have social anxiety. Please be kind and reassuring to us.
Please reach out to us. We won't often make the first move after suffering from a lifetime of rejection, exclusion, and being bullied.
Please practice inclusion. 

I am Autistic and I want to be valued and accepted for simply being me. 

Accepting Herself

Ru has written Accepting Herself on tumblr

Trigger warning for mentioning of bullying

Standing

Standing by Duckie


Today is Autistics Speaking Day. What does that mean to you? Maybe nothing. To the Autism Community, particularly those who believe in self-advocacy, today is a day to celebrate standing up and speaking out (using whatever form of communication works best for each individual).

What does it mean to me? As of today I have been Autistic for over 36 years. I’ve only known I’m Autistic for a little over a year now. About 2 years ago I sat on the edge of my bed and told my wife that I was afraid a day was soon coming where I wouldn’t be able to leave the house anymore. That conversation really triggered my quest for answers.

When the answer came (kicked off by this wonderful post http://eruditeaspie.blogspot.com/2011/01/i-am-me.html), my initial emotion was joy. Not regret, not fear, not shame. Joy. For once, I understood me. And I discovered a community that understood me. That started my journey, one I’ve undertaken on many subjects before, to learn everything I could about Autism and Asperger’s.

Though bullied, misunderstood, and misdiagnosed for many years, I can stand today. I am one of the lucky ones. Many Autistics go through life, diagnosis or not, and continued to be bullied, misunderstood and misdiagnosed. That’s not to say that I’ve reached some magical nirvana where bad things don’t happen to me anymore. Quite the opposite is true. Very much in the spirit of why Autistics Speaking Day was started, I refuse to be a victim anymore.

Refusing to be a victim encompasses more than just rising above what others do to me. It means refusing to use my Autism as an excuse. You see, by the time my Autism was discovered, I was already a husband and parent. I never had anyone tell me Autistics shouldn’t marry and they most certainly shouldn’t have kids. I did it never being told those things till after I had done them. Granted, it has been incredibly hard work. I have one failed marriage to prove it. But don’t let that be a deterrent to you if you are Autistic and considering marriage. Fall madly and deeply in love. Don’t let anyone tell you different.

Before I knew about Autism, I thought I couldn’t succeed as a parent. Today, I know I’m Autistic and yet have full custody of my four kids. It is incredibly hard work. Sometimes I have to retreat to the silence of my room just to recharge a bit so I can keep going. But I keep going. I will not be a victim of those who say Autistic adults shouldn’t raise kids. My kids don’t know I’m Autistic. They know dad is different but they also know I love them and will protect and provide for them.

Much like many other Autistic adults, I appear fairly “typical” on the outside. I have a career, a family, and I manage to maintain my responsibilities. However, so much of that is 36 years of learned behavior. I stim, its just that I chew my tongue to stim so no one ever sees it since it goes on in my mouth. I melt down, ask my family they’ve seen it. I live in constant fear when out in public. I can’t take last minute changes in plans. I won’t wait in line. I will take the long way through the grocery store to avoid aisles with people in them. 


The one area of my life where I still give in is that I am not public with my Autism. In 2012 there is too much risk for me to go public. And this too is part of what Autistics Speaking Day is about. To show the world that Autistics can do many things society and the “experts” say we can’t. One day, I pray, someone like me can be public with their Autism and not fear losing their job or their kids.

I will not be a victim even if that means I have to be silent sometimes. But I won’t be silent today.

First Contact


First Contact by Jessica Banks (@ProfBanks on Twitter) on her blog Jessica Banks schools you.


I feel like I’m living my life as an autistic in reverse. I was aware of Autism Spectrum Disorders and Asperger’s Syndrome generally, but quite frankly, I never applied myself to really learning anything substantial about them. I had trained as a crisis counselor while I was doing my undergrad at the University of Kansas; Headquarters is the oldest, continuously operating phone and walk-in crisis center in the nation. In the ’90s, their training didn’t include anything specific about how to talk to autistics, but their Rogerian approach and general attitude of acceptance provided me with a good footing for dealing with all sorts of neurodiverse folks.

Then,  my eldest son was diagnosed in 2008. That diagnosis was a blessing, to be perfectly honest. Until the school showed us how all the strange, inexplicable things about him actually formed a pattern that belonged to Asperger’s, the leading theory for what was wrong with Connor was crap parenting. When presented with a new situation, my primary coping method is to build a fortress of books on the subject, then read my way out, like you would escape a marshmallow dungeon if you were handcuffed by eating a hole to crawl through. (Hey, don’t mock–it works for me.)

The more I read, the more I recognized of myself. It came as a complete shock, how well the Asperger’s pattern explained pieces of my life that I’d never been able to make fit. The spotlight of memory swiveled back to all the times I’d been called “intellectually advanced but socially backward” in my childhood. My fixations on weird trivia, the First Ladies, native costumes around the world, Sherlock Holmes (so much like an autistic, himself), foreign languages, and others. How much like learning those languages was like learning to “read” people. All my weird sensory issues with fabrics and foods. My strong visual memory and how I see everything play out in my head as I read. My sensitivity to sounds, both good (perfect relative pitch) and bad (loud sudden noises are my only migraine trigger). A million little things, none forgotten, but suddenly in focus.

And while my primary preoccupation has been on using my own understanding of the autistic experience to help unlock doors for my son, the corrective lens of identity and memory also sharpens things that stayed in the background so long, I’d almost lost sight of them.

Like Clarence Treutel.

When I was nine, my mom remarried and we moved to Whitewater, WI, where my new stepdad was a professor of music education at the state university. It’s a gorgeous little town full of Victorian homes and stately elms. The university, with about 10,000 students, somehow manages to be insulated from everyday life, both for those on-campus and those off. Its presence made itself known in funny, mostly advantageous little ways. We had a disproportionate amount of cultural resources–world-class concerts, technology, a great public library. The people of color were most often Indian, African, or Asian, as opposed to Latino or African-American (this has changed a lot in the years since I moved away, thanks to a large influx of Hispanic workers for the big farms all around town).

Clarence was probably in his 50s when I met him, a perpetually smiling man with Mad Men-styled glasses and a salt-and-pepper buzzcut. He had an old bicycle that he rode sometimes, but mostly just walked along the sidewalks around town. He’d known my dad for a long time; my dad was very kind to him, and it didn’t occur for our family to treat him otherwise. He offered to walk my brother, sister, and me to and from our new school, a little less than a mile each way.

As we walked and talked, we got on well with him. His sense of humor and world outlook was that of a sixth-grade boy, generally, except for when it came to his interests. On town history, radio shows, old movies and TV, and professional wrestling, he could hold court. He was the only person I’d ever met who remembered as many facts, as clearly, as I did, and we genuinely enjoyed each other’s company. I didn’t know what autism was, then, and he wouldn’t have known either, even if his mom and he hadn’t been Christian Scientists, which kept them from ever getting a diagnosis. But he was my first contact with a mind like mine.

Only when the school year got fully underway did I start getting questions about why I was spending time with Clarence. “He’s so weird,” my classmates would say. “Did he ask you to sign his bike seat? Don’t do it. My brother did, and he, like, talked to him for years! Like they were friends.” I noticed how the older kids would abuse him as we went past the junior high; they danced around him, chanting stupid taunts, accusing him of unspeakable things, occasionally daring to take a swipe at his body or bike. He would scowl and wave them off, trying to come back with clever retorts, sometimes. But mostly, he just held his chin firm, sadness in his grey eyes. I learned how to chase that look away by asking him about his favorite things.

Just like I do now for my son, when the world makes him so unbearably sad.

His mother died around the time I graduated from high school, leaving him alone; his father and brother had died quite some time earlier. My parents became his Powers of Attorney, and they continued to treat him with care, patience, and affection until they moved away in 1995. Another family took over his care. I heard that Clarence died in 2002, but it turns out he’s still around–a good friend back home corrected my misinformation, much to my happiness.

Don’t bother looking for him on the Internet. I did. He’s not there. There’s a 2002 Walworth County tax record for the property where he lived. That’s all. No pictures, no mention anywhere. Like he doesn’t exist. Like he hasn’t walked so many generations of kids to school, their self-elected protector. Like he hasn’t learned to stop across the street, so the parents can’t complain that he was a pedophile, and the bullies can’t be heard so loudly. I wish I had a picture, so you could see his kindness. But that absence tells an important story, too.

I’m so afraid, when I think of all the autistic kids who are aging out of the schools and social services, adults as alone as Clarence, always outside looking in. How many of them will find families and friends to give them help and love? How many of them don’t know how to ask for it? How many of us will see them and judge the surface, never taking the time to find out what chases away the sadness in their eyes?

Reclaiming Voice

Autistics Speaking Day 2012: Reclaiming Voice by Ari Ne'eman, ASAN




Holidays are funny things – they come around once a year, and remind us of feelings and ideas that we shouldn’t have ever let ourselves forget. Whether it’s Thanksgiving gratitude or July 4th patriotism, we turn to holidays not because the day itself matters, but because it gives us a chance to relocate something important that we should’ve never let escape from our day to day existence. Holidays shouldn’t be necessary; we should be able to realize the importance of these sentiments all the year-round. But of course, they are and we don’t. That’s why holidays matter to us.
Autistics Speaking Day is not an old holiday, but already it is becoming an important one for the Autistic community. We are moving past the old days, when to be Autistic was to be a silent beneficiary of the charity and goodwill of others. We speak up often now, challenging media that demeans us, conferences that exclude us and organizations that dehumanize us on a regular basis. In the last half-decade, we have witnessed an awakening of our community.
And yet, even amidst this positive change, we don’t often take time to sit and think about the value of voice itself.

Speak Your Mind

Speak Your Mind by Smuggy Bunny on Autistic And Awesome


Today is Autistics Speaking Day, so I encourage all Earthlings on Earth, autistic or not, to speak your minds today.
Speak your true minds.
Communicate your true thoughts and feelings about something that is important to you.
Tell your true thoughts and feelings to someone who is important to you.
Tell your true thoughts and feelings to a group of people, your families, your friends, your acquaintances, total strangers.
Communicate your true thoughts and feelings without thinking about what other people are thinking about you.
Speak your true minds without fear.
Take a chance and see what happens.
These are what I do today and everyday.
From speaking my mind, my true mind, my true mind without fear, I have learned that no matter how much I am ridiculed or ostracized or censured by some people for saying my true thoughts and feelings outloud, that there are always plenty of other people who think and feel what I think and feel without being quite as good at speaking their minds, this social skill, this communicative function, as I am.
If I don’t speak my mind, then they won’t either.
If I do, then one of them might, then another, then another, then another, the moar moar moar people who have had their say, the moar moar moar people who will have their say, the moar moar moar people who have heard, the moar moar moar people who will hear, the moar moar moar people who have taken action, the moar moar moar people who will take action, the moar moar moar people who have made a change, the moar moar moar people who will make a change.
For this one day, take a chance and speak your mind about something to someone.
For this one day, take a chance and see what happens.
Sticks and stones may break your bones, but words may set you free.

2012 Walk Now For Autism Speaks (Atlanta, GA)

Timotheus "Pharaoh" Gordon, Jr. has written 2012 Walk Now For Autism Speaks (Atlanta, GA) on Pharaoh's Principles (via Abilities of the Arts)


May 22nd, 2012


Good afternoon everyone!! Lovely day in the ATL as usual.
This past Sunday, I went to the 2012 Atlanta Walk Now for Autism Speaks in Atlantic Station. I enjoyed walking with two fellow Aspies, taking pics of the protest and listening to their stances on how the autistic adults (namely those who are verbal and able to work) are misrepresented in the media/non-profits. I also loved interacting with the people (and kids) with autism and their families, and some (like the family below; NOTE: at least two people in that family are autistic) emphasized autism as being a wonderful gift instead of a curse.


Read the rest here.