Asperger Square 8

Chicago

noreply@blogger.com (Bev) — Sun, 20 Jul 2008 18:14:00 +0000

TO: Mr. Burgess

RE: Arrival

Mr. Burgess,

Squawkers and I will arrive at the airport around 8 PM your time.

Please discontinue the study of mirror neurons until we are there. I believe that you may have misunderstood the concept.

Yours truly,

Square 8

Burgess photo by darling clandestine.

Square Talk: Squares in Translation

noreply@blogger.com (Bev) — Sat, 19 Jul 2008 13:51:00 +0000

A serious discussion

noreply@blogger.com (Bev) — Thu, 17 Jul 2008 22:41:00 +0000

I

I was on the phone. This was several years ago, before I had a name to describe what was going on with me. I was trying to figure out what had gone wrong that morning and what was continuing, throughout the afternoon, to go wrong.

My friend had invited me over on a Saturday morning. There was a serious topic to be discussed, something personal, between the two of us. The invitation had been issued on Wednesday. On Friday, something had changed. A plan had been made with several other people to have breakfast at the first person’s house. I was invited.

Since there had not been a time set for the serious discussion, I asked at this time. Would the serious discussion still be occurring? Of course, I was told. After the breakfast, there would be plenty of time.

Now, I knew that a chatty breakfast for five was not what I needed right before the serious discussion. I needed to get my thoughts together, I needed some quiet reflection time. If I chose to put a lot of energy into trying to be social, there was no way I was going to have sufficient language skills when it came time for the serious discussion. So I declined the invitation to breakfast, although I knew this would be seen as unfriendly and wrong.

At the time, I wasn’t able to explain about the energy drain that occurs with conversing. Not because I didn’t know about it. I did. But because, since Everyone said I was being ridiculous or making excuses or “giving in” to my anxiety disorder (diagnosed by Everyone), I figured they must be right somehow. I must be a hostile, or at least unfriendly, person.

This was where I made the big mistake. I asked what time I should expect to come over. When the answer was vague, I asked my friend to call when the breakfast was over and the time for the serious discussion had arrived. At this point, the friend lost all patience with me. She let me know that I was manipulative and demanding and all kinds of difficult. Why couldn’t I accept this slight change in plans, show up at her house without a specific time, without knowing for sure who would be there? How hard could it be?

In my mind, I saw a large pitcher of liquid representing my communicative resources. Already, a quarter had been drained, in the effort to find a non-offensive way to get my question answered. I pictured the rest of it spilling out as I tried to balance it like some sort of circus animal performing tricks of conversation. Everything I knew about the topic of the serious discussion had reverted to a form that wasn’t compatible with words. I couldn’t get it back.

I think we will have to do this another time. I said something like that. It was around 1:00 in the afternoon by now, and I was getting tired. Before she hung up the phone, my friend remarked that it certainly would be nice if, in the future, I’d make just the slightest effort toward accommodating others.

II

Today, I was involved in a conversation about the classic “triad of impairment” concept. (Personally, I prefer to call this a "triad of differences.") I thought about the story of the serious discussion that never was. Was this a communication problem or a social issue? What part did the infamous “insistence on sameness” play in the way my friend and I had perceived the situation? Are these three facets of autism independent features, or do they interact to make something unique? Is this a useful or valid way of thinking about autism? Is all this stuff in the eye of the beholder anyway? I thought I would take another look at this story with those questions in mind.

For my friend, the key issue was probably my need for things to be exactly as stated. She saw a very inflexible person, someone unable to tolerate a change in plans. Indeed, this has been a constant theme throughout my life. I wonder if non-autistic people think much about the reasons this is true for some of us on the spectrum. In my case, at least, there is an overwhelming sense of unpredictability that is a part of my very being. From one day to the next, from one hour to the next, I am never sure how well I will be able to speak. I still have days when, no matter how sincerely I have formed the intent to speak, no matter how clear the thought is in my mind, no words come out. At other times, words tumble out unpredictably, announcing irrelevant information or stating something tangential or even in opposition to what I am thinking.

Speech isn’t the only area where this happens, but it is the most frequent and obvious example. It is possible the issues I have with oral communication are at the root of a wide range of repetitive needs, from the physical stims that I use to keep myself moving to the so-called perseverative interests which hold my attention in part because of their reliability.

While my insistence on sameness was, on the surface, the thing that annoyed my friend, deeper inspection would have revealed that she saw my primary problem as a social one. She had said to me on several occasions that I was afraid of people and just needed more practice socializing to become more comfortable.

There is some truth in the idea that I was (sometimes am) afraid of people, especially in groups. It is clear to me how I learned this fear. I learned it through experience with many, many people who reacted to me as if I were somewhat less than competent. I learned that my ways of communicating were not acceptable and would not be tolerated by most. I came to believe that I would be either ignored or mocked or vilified or patronized if I dared to appear in a group of people. I believe these reactions resulted mostly from the way I talked or didn’t talk, as well as my differences in understanding and transmitting non-verbal cues.

I think now that the way I see the day of the serious discussion is not at all the way my friend would describe it. I always thought that if I could only explain to the people in my life what I was thinking, they’d see I wasn’t so different after all. The fact that I am so often unable to do this through speech, that is the central point for me, the key to understanding and describing my own autism.

No Indigo

noreply@blogger.com (Bev) — Fri, 11 Jul 2008 22:42:00 +0000

by Squawkers McCaw

I have heard the rumors. I wish to correct these misconceptions.

I am not the bridge to your future. I am not the next step in your evolution. I have no telepathic abilities or innate spiritual gifts, no past life memories or hypersensitive vibrations. I have a rubber cracker and a perch.

Some may have confused me with the Lears Macaw, sometimes called the Indigo Macaw. Please see the photograph for proper identification.

Do not confuse it with the Hyacinth Macaw. The Hyacinth is not an Indigo. I am a Blue and Gold, the type of Macaw most often chosen by humans for companionship. I am not an Indigo.

And speaking of companionship...

At one time, I thought I was autistic, but I am not autistic either. According to this website,

“The diagnostic criteria for autism is (sic) quite clear. It states that the autistic person lives in his or her own world, and is disconnected from other people. The autistic person doesn't talk because of an indifference to communicating with others.”

I am deeply ashamed to have so misread the books. Perhaps I am not as intellectually gifted as I had hoped. I feel as if my head were made of glass or…

wait, that’s no ordinary glass…

could I be...

a crystal?

Submitted by Squawkers McCaw

Are You Serious?

noreply@blogger.com (Bev) — Fri, 11 Jul 2008 02:12:00 +0000

This was a pretty tough crowd. No one laughed at my introduction slide, which was marked clearly — Introduction: This is a social convention— or my earnest explanation of how and why one should say hello to a new acquaintance. Well, it was four in the afternoon, the last of a day full of sessions. The room was packed and it was hot in there. There had been a delay setting up the equipment, so everyone attending my session had to watch as the projector was set up, microphone adjusted, internet connection checked. So I didn’t worry too much at first.

When, by the third or fourth piece of silliness, hardly anyone had cracked a smile, I had an idea. Could it be happening…again? I asked them. “Did anyone think it was funny, when I talked about introductions…or did you think I was serious?”

Yep. That was it. They thought I’d meant to explain to them the importance of saying hello. Now we could all relax a bit, and have a laugh at our misunderstandings, at this unintentional exercise in understanding the Theory of Mind concept. You see, I thought I’d understood well enough. Here was a group of pretty sophisticated professionals, mostly OVR and Supported Employment specialists who were not going to be fooled into thinking that a diagnosis of AS would necessarily mean 1) no sense of humor and 2) poor understanding of basic social niceties. But they weren’t sure. They were keeping quiet until they were better able to assess the situation. Laughing at someone’s differences, at someone’s expense, was not their intention.

In short, I’d assumed a shared point of reference, and it wasn’t there. Probably, this is the thing most responsible for the question I hear more than any other in everyday conversations: Are you serious?

Yes, much of my humor depends on the viewer or listener having experienced the same input I have, and having interpreted it in a similar way. That shared history, whether through popular culture or classic literature, plays an important part in any humor. For the autistic person, one who tends to take a strong interest in a few topics rather than a general interest in many topics, the opportunities to share humor can be somewhat reduced. There is a fairly narrow audience for jokes about the Amish Anomaly or the Sally-Anne test. (Brick walls don't get many laughs, either.)

So that was problem one, the assumption that my audience would be familiar enough with autism stereotypes as stereotypes to know when they were being tweaked in a funny direction. Of course non-verbal communications (body language, facial expressions, tone of voice, etc.) can serve as cues that something is intended as a joke. I can use this to good effect sometimes. Think of the humor of Steven Wright, all the more funny because he appears not to know he is funny. But sometimes, a flat affect is just a flat affect. Sometimes it confuses people who are used to a little more inflection or finesse.

Yesterday, I was not having a great speech day. I felt like I was trying to lasso words while riding a horse that kept rearing up or breaking into a gallop. I didn’t have anything left in me for finesse. Better to stick to the script, hope for the best. I walked through the rest of the slides, alternating the absurd with the serious, often combining the two in semi-haphazard fashion, as I’m inclined to. The Detective magazine stories worked well in encouraging group discussion. By the time I got to those, a number of myths had been questioned, and everyone seemed more relaxed and less afraid of saying the wrong thing or giggling at the wrong time.

Afterward, I had one less standard question to answer. I got it last time, and the time before, but here, it had already been covered. I can usually tell when this one is coming. It’s practically the opposite of the one that comes up in conversations. Someone steps forward nervously. I’m not sure if I should…or…I mean how to say it…but…do you…do you know? Do you know you are funny?

Well, yeah, sometimes.

San Diego

noreply@blogger.com (Bev) — Wed, 09 Jul 2008 13:03:00 +0000

Fred

Cactus at USD

Old Town Mexican Cafe

Squawkers would have liked this one.

Preview

noreply@blogger.com (Bev) — Tue, 08 Jul 2008 14:29:00 +0000

These are some materials I'll be using for tomorrow's presentation on autism in the workplace as part of the APSE/Supported Employment conference in Louisville, KY.

"The case of the Imperfect Yeast Rolls" is a story I use to illustrate particular difficulties which can arise from sudden procedural changes in the workplace. Based on my own experience, this story explains how two simple and inexpensive accommodations could have prevented my leaving a job I had for seven years. It is a dramatic tale of deteriorating relationships with managers, as neither they nor I could understand why I was unable to adjust to the new requirements for making bread.

After a series of these "magazines" about misunderstandings on the job and how some of these can be addressed, it's important to note that autistic workers do not always require accommodations, and can in fact be among the most valuable employees in a company.

Finally, here's yet another way autism can look in the workplace. You may have autistic people working with you and not even know it!

Higher Education

noreply@blogger.com (Bev) — Mon, 07 Jul 2008 13:20:00 +0000

Inside Higher Ed today carries the story of professor Stephen A. Yoder's encounter with a student he recognizes may be on the autism spectrum. "My Semester With an Asperger Syndrome Student" gives a week by week account of Yoder's efforts to understand and accommodate the learning style of his student, "Fred." While Fred does not have an accommodations letter from the university's disability center, Yoder wonders if he might benefit from some accommodations required on behalf of another student, such as a peer note taker and extra time on tests.

In an interesting parallel, the student and professor turn to outside sources to increase their understanding. As Yoder reads Thinking in Pictures and other books on autism, Fred studies the review guide written for the professional examination in course's topic. The article wraps up with Yoder's observations regarding the student and teacher:

We all must make adjustments for our students’ particular needs in each class. Just as an eager non-English speaking student in the front row makes us realizethat we cannot use too many colloquialisms and local examples, so too did I realize that much of what Fred needed was simple repetition of key concepts.

Not every professor will have the time or take such an interest in understanding the individual needs of a university student. This is an encouraging story, though, a reminder that there are educators willing and able to make that effort.

For Fred and others like him, perhaps the most important realization noted by Yoder is this one: "He did not want confrontation, even if his tone or behavior might indicate otherwise." While many students with AS will work out their own paths to academic success, the problem of being perceived as rude or indifferent due to differing social behaviors can be our downfall. The person who recognizes this and is able to see past the differences, can be a key ally supporting the success of the AS student.

Recommended reading for educators and others (not noted in this article): Aquamarine Blue 5: Personal Stories of College Students with Autism, edited by Dawn Prince-Hughes.

Some kind of goodbye

noreply@blogger.com (Bev) — Fri, 04 Jul 2008 02:17:00 +0000

I lost a friend this week. I had known her a little over a year; she was a private person, so I’ll not be giving her name or identifying information. She died in an accident early this week.

Some friends become important because of things we have in common. I met this woman because of something we had in common—Asperger syndrome. She had contacted me at the suggestion of a mutual friend, hoping I could direct her to a group for adults. When I couldn’t, we decided to form one. It took a long time to put the plan into action, but we did it. In the meantime, we met in coffee shops to discuss autism and our lives in general.

Through these meetings, I became aware of how much she and I didn’t have in common, the ways we differed. There were a lot. She had little interest in advocacy, at least the way I was used to using the term. She was not a reader of Autism Hub and had never heard of Neurodiversity. She was interested in biomedical interventions.

My friend had been in a work-related accident a few years earlier. This was something which seriously affected her health for the rest of her life; she was sure that she would not have been involved if she had been more adept at interpreting the subtext of language and behaviors going on around her. Knowing the full story, I believe she is correct in this. She suffered the consequences of the unethical actions of others. She knew this, too, but I’m not sure she ever got past blaming herself or her disability.

I advocate for societal interventions for many reasons. One of them isn’t that I think autistic people have no need of personal interventions. My friend worked hard to increase her social understanding and to be a productive citizen. She took self defense and learned to stand up to bullies. She shared information and resources freely with others who might benefit. She listened to people no one had ever listened to before. She listened with empathy.

Quickly, she became the emotional center of our group, offering acceptance and the wealth of her experience. I was enriched by caring for someone whose views I found so often in opposition to mine. I never stopped arguing my own position that the changes that needed to occur were not in our neurology. She never stopped talking about vitamins and supplements. We managed to get along.

In the days following her death, I obsessed, in unsurprising fashion, about the parrot she’d left behind. She’d had a beautiful African Grey, a bird she had tutored in two languages. Who would care for him, that was all I could think about for awhile. It was a way of grieving, different from some, but no worse. When I knew the parrot was okay, only then, I was able to turn my attention to the person I had known, to register that loss, to start the process of goodbye.

The show

noreply@blogger.com (Bev) — Fri, 27 Jun 2008 15:53:00 +0000

On Tuesday night, I went out for Mexican food with four other Autism Hub bloggers. The restaurant was noisy and crowded. I was tired already. Steve worried he’d picked the wrong sort of place. Fresh corn tortillas in San Diego’s Old Town. What could be better? Someone pointed toward the ceiling. Everywhere I looked, there were parrots.

Sometimes I can still forget or discount some of those important-to-most-people scripts—Hello How Are You (and especially Goodbye) are less meaningful to me than to some. I do understand the importance and value of Thank You, however. To remind myself, I usually include a Thank You slide at the end of each presentation. This one was different. This time I put Thank You first. I wanted the attendees to know not only that but why I appreciated the invitation to speak about autism and advocacy. I needed to tell them about the times and the ways I’ve been asked not to speak about autism. Shut Up isn’t a script I ever hope to appreciate or embrace.

III

There was gluten in my breakfast. It was good. The five of us worked together and separately on our computers. Then it was time to go onstage. It’s time for the show, one of us said. It could have been anyone, I don’t remember. “The show” had become a part of our shared language, the culture of the group. As if we had known each other a very long time.

IV

Do’C of Autism Street talked about the autism “epidemic.” How many people believe there is an epidemic, he asked. Not one person admitted to it. He gave the presentation anyway. And it was brilliant. I’m pretty sure someone referenced Dr. Gernsbacher’s work in every session I attended. The day’s most popular question: How do you spell that?

V

About a year and a quarter ago, I started writing this blog. I saw it as an accommodation of sorts, one that would allow me to express some things I had not been able to get across to people in my life. Writing is my first language, the one that allows me to say what I really mean in a way that most people can hear. Somehow, this has led to people asking me to speak at conferences. Somehow, I have found I could do that. Not smoothly, not conventionally, and certainly not without PowerPoint, but as a person with something to say, nevertheless.

There are a lot of points I could make related to this. I’ll stick with this one for now: to all who have supported me in this work, thank you for presuming competence.

A woman at the conference talked about her brother, a man who doesn’t use words to communicate, but makes other kinds of sounds. Not long ago, she and others in her family decided to presume competence by behaving “as if” he understood and as if his sounds and actions carried meaning. When she asked him if she was on the right track, he stopped making sounds and took a very long, very deep breath. Yes. The sister heard Yes. Another deep breath. For the first time, maybe the first time ever, in more than 30 years, someone had heard.

VII

Some people had a hard time understanding why anyone would be opposed to neurodiversity, a concept promoting respect for all human beings regardless of differences. We talked a lot about functioning labels, and how believing these not to be accurate descriptors of abilities does not in any way imply that all autism is the same or that all autistics have the same needs. This seemed not to be terribly controversial or difficult for most people to grasp. That was refreshing.

VIII

I was having a “good speech” day. Was I in danger of “losing my label?” Maybe…except for the stimming, the toy bird tucked in my shirt pocket (thanks, Burwick), drawing of squares, mumbling, pacing, trilling, minimal eye contact, avoidance of sunlight and light conversation... No, it wasn’t that good a speech day.

Fortunately, there was no need to pass (not that I’m very inclined to try unless I feel very threatened). After all, I wasn’t the only one repeating a single word. Respect. I heard it time and again until the entire conference became a concert of shared echolalia.

IX

The way we supported each other, each one taking the lead in turn as areas of strength and need came into view, each one stepping up naturally to offer technical assistance, emotional support or a ride to the airport as needed, this is a big part of what I will remember about this week. Support doesn’t always need to be complex or difficult. As we accepted and offered these small accommodations, we grew more powerful as a group and (at least from one perspective) individually.

Did we make a difference in anyone’s life? I can’t be sure, except in the case of my own. As I enjoyed some social time with a group, and shared work as part of a team, able to lead and to follow as needed, I became aware of a flexibility I have rarely known. As if development truly were lifelong, as if acceptance truly could promote growth. Here in the company of friends, I took a deep breath and enjoyed the ride.

For a much more thorough description of the conference presentation, be sure to read Steve's post.

Deconstructing Myths

noreply@blogger.com (Bev) — Wed, 25 Jun 2008 14:43:00 +0000

In just a couple of hours, Estee Klar-Wolfond, Steve D., D0'C, and I (and oh, yes, did I forget to mention...Autism Diva is here!) will present information about blogging and advocacy to a group of around 200 professionals and parents (and even a few autistic people!) at the University of San Diego's Summer Autism Institute.

One of my parts of the presentation will address some of the myths regarding both Autism Hub and the concept of Neurodiversity. I am looking forward to having the opportunity to showcase some of the inaccuracies being spread by persons with agendas ranging from chelation to the absolute necessity of a single particular treatment for all autistic children.

Many of the attendees will not have heard of the Hub or of neurodiversity before. My hope is that some will be moved by our presentations to further explore the roles played by these concepts in promoting respect for autistic people. When they do, they will encounter such foolishness as "Neurodiversity advocates do not care about 'lower functioning' autistic people," and "None of the bloggers on Autism Hub are actually autistic." Of course, all will be free to form their opinions, but having a chance to warn a few people about these misunderstandings and lies (there are plenty of both, in my opinion) may prove advantageous.

Many thanks to Dr. Anne Donnellan and the University of San Diego for helping us to promote the fair and ethical treatment of all people with neurological differences. More later...

The animatronic is political

noreply@blogger.com (Bev) — Wed, 18 Jun 2008 04:40:00 +0000

It’s probably genetic.

Why do you have that …bird … with you?

My mother has a Furby.

Someone looks straight at me, then quickly away as she sees me notice. Is that real, I hear another woman whisper to her companion. Depending on where we are, the explanation varies. At the nursing home, he has friends; their faces light up when they see him from across the dining room. At the independent apartments for senior citizens, the response is mixed. This is where I work. I have my toy parrot at work. Sometimes grandchildren visit and I’ll hear someone becoming impatient (this could be the grandparent or grandchild) and Squawkers and I will help out by entertaining a bit. On my own, I’m not very entertaining. I tend to be too serious, remote. But as a pair, we are social, almost friendly.

Squawkers does a lot of things for me. He assists with difficult interactions and even echolalia. Ticket. Ticket. Ice, I like ice. Have you every eaten a pine tree? Squawk. Ticket. Ice. His words and behaviors are predictable. His smile is always the same smile, never creating the uncomfortable suspicion of sarcasm or mockery.

He helps me meet the right people. I took Squawkers to a conference last week. There were about 600 people there. The day after my presentation, many people approached me, wanting to talk, The day before, I was invisible, except for the evening event. Squawkers McCaw was with me then, exploring the tables filled with interesting toys and books, practicing the piano, and nearly (!) biting a woman who sat at a table under a FEAT banner. With my animatronic companion along, I was visible. This was where people turned their heads quickly away, possibly thinking, oh, one of those. I see now, one of the others. A few, though, were intrigued, and wanted to talk with my parrot.

These are the people I like to meet. Because when they see an adult with a toy bird at an adult event, they can’t be sure exactly what they’re seeing. Is this mental illness, intellectual disability, autism, just plain kookiness, someone seeking attention in inappropriate ways? Only those who are willing to look past those labels or are comfortable taking a chance on the entire range of categories will easily engage such a person.

Some of the rest of them heard about this theory during the presentation. Cautiously, a woman approached us afterward. He won’t bite me will he, she asked. I promised that he wouldn’t. My son has a talking bird, too, she said. He would love this one. In a whisper, she started to say it, maybe forgetting where we were and the reason for that…he has…and now she looked at me as if I were the one who might bite…I mean my son is autistic. I may be wrong, but the gleam in her eye looked a little like pride working its way up to the surface.

The PECS they overlooked

noreply@blogger.com (Bev) — Mon, 16 Jun 2008 16:24:00 +0000

Not every basic need a non-speaking person might like to communicate is available in the commercial sets of Picture Exchange Cards. Here are a few suggestions to add to the usual collection of foods, drinks and activities.

A word for the history books

noreply@blogger.com (Bev) — Sun, 15 Jun 2008 06:34:00 +0000

When I first started writing this blog, I was still using the term “curebie.” You can find it in the archives, it’s a part of my history. As I began to write more and more of the need for respectful language in discussions of autism, I had to give this some thought. I considered the possibility that some people who had been assigned this label were at an early point in the process of acceptance, a process which would not be expedited or supported by my use of an objectionable term. I got to know some of the parents connected to Autism Hub. I realized that most of these folks, strong supporters of Autistic Rights, hadn’t started out that way. For most of them, time and careful consideration were required before coming to acceptance.

It seemed that the people I met in person who supported finding cures for autism had never even known that another point of view existed. All they had heard was that autism is tragic, that it steals children, leaving empty shells behind, that it ruins lives and families, that it costs society dearly.

And then there were the hardcore seekers of cures who were never going to be swayed by my arguments. What would they do with a word like “curebie” but hold it up as evidence of hypocrisy or take it as a badge of honor? If I am going to continually ask these folks to stop using words like toxic, disease, and damaged, maybe I should not use words myself which they’ve asked me not to use.

Yes, there is a power differential to be factored in. And I think that some of the people who would say, “well isn’t this the same thing?” understand the difference perfectly well. Others don’t, and at some point in the journey toward understanding, there may be a window of opportunity, a reachable moment. I don’t want to blow it by using a word some consider a slur.

I think this is an example of what some have called Theory of Mind. Not only do I imagine the other’s state of mind, I alter my behavior, if ever so slightly, due to this understanding.

When someone persists in using insulting words, after having been told that these are not only hurtful, but damaging in terms of very real consequences, that person willfully disrespects his or her opponent. Such actions speak clearly about the values of people who see themselves as somehow more worthy of respect, more human, than the pitiable beings they would "help." Sometimes this is done in a spiteful way, as when someone again compares autism to cancer, noting that it sure is going to upset the “ND.” Usually, though, it just comes across as extreme self absorption and arrogance.

The decision to change this one aspect of the way I talk wasn’t made lightly. The reason isn’t that I like hurling insults. It is that I have been asked to shut up a few too many times. I had to be sure that no one took the word from me, that I made the decision myself based on new information and logic. After all, I've considered abandoning perfectly good words like "neurodiversity" for reasons which in the end didn't hold up.

I’m not well equipped for games. I grow tired of games. Especially those like Ring Around the Straw Man, and Red Herring Roundup. Check out the first comment on this post, wherein a well known autism advocate engages in a disingenuous redefining of “freedom of speech.” Despite his training as an attorney, he implies that his legal right to self-expression is somehow threatened by another person’s stating of an opinion. Are we really meant to believe this? Or to think that he does? No, this is a shell game, an attention shifting tactic that has no place in a serious discussion.

It's all enough to make me want to say some very bad words (see Jenny on the Larry King show with the doctor). At least for today, though, I won't. It's not worth my time and I've got all kinds of Neurodiversity work to be done.

Square Talk: Squaring Off

noreply@blogger.com (Bev) — Wed, 11 Jun 2008 17:08:00 +0000

Click to enlarge (Maddy)

The Obligatory Post-Conference Post

noreply@blogger.com (Bev) — Mon, 09 Jun 2008 18:21:00 +0000

I am still recovering from my presentation last Friday at the Kentucky Autism Training Center's Autism Institute. My thoughts are still a bit scrambled from too much talking, so I asked a friend to "interview" me to get me started up again. These are her questions and my responses. If you were at the conference, thank you for visiting my blog. I'll probably write another follow up later when I've had some time to process everything.

Q: What surprised you most about attendees' response to your presentation?

A: I talked about some of the language that's been used to describe autism and autistic people, including train wrecks, tsunami, empty shells, children who are toxic. I showed the Ransom Notes materials and some of the responses to this from the Autistic community. I talked about Autism Every Day and why I find it reprehensible. I expected, I guess, some anger, some defensiveness about this. Instead, I saw people who found these images as shocking and wrong as I do. I heard gasps and saw people cover their mouths when they saw the picture of Katie McCarron and heard about her murder. Most people had not heard about Alex Barton.

I came away with the conclusion that perhaps I spend too much time reading opinions on the internet. Maybe this has led me to believe in a false dichotomy, something I tend to accuse others of doing. My fears that people would be angry with me for asking them to speak more respectfully, those fears were not realized. Instead, I met a lot of people who just hadn't thought about this stuff before. Maybe some of them will speak up when the organizations they belong to speak in ways which are damaging to autistics. Maybe I will approach groups like this one with a bit less trepidation. Most of them are good people who have just not had experience with autistic adults or been asked to consider these ideas.

Q: What was "different" about this event?

A: This was my third year attending the KATC conference. I've had some issues with it in the past. For example, last year, there was a panel of family members without a single person on the spectrum represented. There also tended to be too many talks with titles like "Autism Boot Camp" and other militaristic names, suggesting either a "war" on autism or the idea that living with someone autistic is necessarily a series of battles. There was a presenter whose husband and children were on the spectrum, and she made a lot of jokes implying that the husband was a "child" too. I didn't care for that.

Part of the difference may very well have been that I didn't choose to attend those types of presentations this time. Sometimes I consider it my responsibility to be there and speak up when I disagree, but for this one I knew that I had my own presentation to worry about and should save my energy for that.

Now I'm not trying to say that we haven't been included or given the floor before. There have been autistic presenters at the previous conferences. These were more of the explaining "what it is like to be autistic" variety, though. As far as I know, this is the first time someone has been invited to take a political stance on some of the things that are done in the name of Autism Awareness. I see that as a huge, huge step forward.

Q: How do you reconcile differences of opinion with people who clearly "want the best for" autistic people?

Q: What do you see as the biggest barrier to getting your point across?

A: I’ll answer these two together; I’ve been thinking some about how they relate. The night before I left for the conference, someone left a question for me, apparently unrelated to the post where it appeared, but regarding why I would equate “treatment” for autism with “hate.” I was tired (and tired of those sorts of questions) and left a snippy answer. The comment began, “This is not a question to start an argument,” but I did not believe this. The reason I didn’t and don’t believe it is that the commenter went on to tell me what I can and cannot do (getting a lot of it wrong) and to attribute a statement to me that I have never said. Also, there was YELLING involved.

I thought about this a lot over the weekend and in relation to my experience with the conference presentation. It’s an interesting paradox for me. On one hand, I express myself well in writing, and not so well at all in conversation. Presenting is a middle ground. I have to talk, yes, and I often get stuck, forget words, accidentally say things I don’t mean, using the wrong scripts or whatever. But it is also a form of written expression, thanks to what I see as the most important accommodation in my life currently, the PowerPoint format. Having the key points written out allows me to relax and know that my ideas will be communicated with or without my oral participation. The ability to incorporate pictures and videos works very well for me, too. In a sense, this is the only time I have both of my “selves” participating, and I think it allows for much less “writing off” than either form alone.

What I mean is that when I try to talk in a meeting or conversation, without using slides or pictures, I am often treated as far less able than I am. When I write a blog post, I am seen by some as far more able than I am. The PowerPoint presentation shows both sides. I doubt that anyone who saw me present would presume to know how well or poorly I can manage my life in all of those areas that get pulled into discussions of high and low functioning. When I do these talks, people see who I am and what autism is in this one particular person—a mix of abilities and disabilities that is not understandable to most people on an intuitive level.

That’s the biggest barrier to me, the disbelief, and the hostility that can generate when people assume they know things they don’t know. Or when they add in their own idea of what I’ve said, along with whatever they’ve heard elsewhere, to what I’ve actually said and then attribute the whole package to me. It’s very frustrating. Asking people to respect autistic people as complete and human and valuable is not the same as saying that autistics don’t need any help. And that seems so obvious, I can’t help feeling that I’m being baited each time I hear that accusation.

When I get comments like that, I always ask the person to read my “For Parents” post. That should be the starting point for any discussion with me about what I do and don’t believe regarding “treatments” and accommodation.

And now, a word from Squawkers McCaw:

New Autism Hub Trading Card

noreply@blogger.com (Bev) — Wed, 04 Jun 2008 00:31:00 +0000

Autism Diva: Not like you think.

Square Talk: Cutting Corners

noreply@blogger.com (Bev) — Sat, 31 May 2008 14:01:00 +0000

Bullying: Resources for positive action

noreply@blogger.com (Bev) — Fri, 30 May 2008 15:28:00 +0000

Yesterday, I recieved an email from a father of a young man with Asperger syndrome. He included the text of this email, which he sent to his son's school, and which he thought might be useful to other parents struggling with feelings of rage and frustration, along with concerns for the safety of thier children. He has kindly agreed to have it posted here, in case others would be interested in taking similar action:

Good Morning,

As most of you are aware my son, his name, has Asperger’s Syndrome. He is now 16 years old and can still tell you word for word the cruel things that some of the kids in his kindergarten class and our neighborhood said to him. He is also now doing very well in school and is popular with both teachers and the few friends who spend any time getting to know him.

This link will take you to the CBS newscast of the story that has broken my heart for 5 year old Alex Barton and his Mom, Melissa Barton, too: http://www.breitbart.tv/html/103693.html

This link will take you to an Asperger’s Syndrome support site with some additional details about the story, as well as links regarding the card and letter writing campaign I am asking each of you to consider taking part in:

http://aspergersquare8.blogspot.com/2008/05/not-special-support-alex-barton.html

Additionally, I would like to ask you to forward this information to your own School system’s School Board and ask that they initiate some kind of educational requirement or in service training for the teachers so that more situations like this can be avoided for these beautiful young people as they try to take their place in the
world.

Thanks in advance for your
support,

Signature

Of course this can be edited to suit individual needs; linking to this blog is certainly not a requirement for using it!

I have been planning to update my sidebar for some time, and am in the process of doing so now. I have added a link list of anti-bullying resources. I also recommend visiting lastcrazyhorn's blog, Odd One Out. She has written some very insightful posts on bullying and its consequences, and also has a link list focusing on specific articles on bullying.

The topic of teachers who bully their students has not been widely researched, but there are a couple of interesting papers available online. One is a very recently submitted master's thesis by Susan Marie Reschny of the University of Saskatchewan. Lengthy, but well worth the read, this is a qualitative study focusing on parents' perceptions and concluding with suggestions for administrators, school boards and other stakeholders to address the problem.

Alan McEvoy's Teachers Who Bully Students: Patterns and Implications has a lot to say about the abuse of power and tactics used by these teachers, tactics that will come as no surprise to anyone who has experienced bullying of any variety (shifting attention to the victim's behavior, attempts to convince victims they are "paranoid or crazy"). This is a pilot study which used convenience sampling, but it surely supports the need for more extensive research in the area of teachers who bully.

There are a few books which offer advice on bullying for students on the spectrum and their parents. Nick Dubin's Asperger Syndrome and Bullying: Strategies and Solutions discusses the topic from the viewpoint of a former victim. Discussing the importance of educating peers, addressing the issue of bystanders, and highlighting the importance of helping kids on the spectrum recognize bullying for what it is, this book covers a lot of ground.

These are just a few resources; there are many more available which I will add when I have the time. Please feel free to add others in the comments.

The Bad Mark

noreply@blogger.com (Bev) — Wed, 28 May 2008 12:11:00 +0000

Mark Mitchell (not his real name) was regarded as a trouble maker by his teachers, and a “nerd” by fellow students. He was the Alex Barton of my grade school class. He was considered “annoying”— he interrupted people, talked too loud, and snorted when he laughed. Some surely thought he was “disgusting” or “gross”— his clothes were often dirty or stained by spilled food and drinks; his nose seemed always to be running, and he burped with alarming frequency. Something was always unzipped or haphazardly buttoned. Worst of all, he cried easily, something completely unacceptable for boys over five.

Mark’s name was next to my name in the roll book. He sat beside me or in front of me every year from first through sixth grade. He lived in my neighborhood, just a couple of blocks away.

There were a lot of Marks in my class some years. The teachers referred to Mark Mitchell as “the bad Mark.” His papers were always a mess, and sometimes his homework was incomplete. He was an enigma, a boy who talked about nothing but science, obviously bright, but barely maintaining a C-minus average.

Mark moved awkwardly, his speech was halting and nasal; he wore outdated clothing styles, and never figured out how to join a group of kids who were playing. As the class scapegoat, he kept me safely invisible. Fewer people noticed my less pronounced awkwardness. Since I hardly ever spoke, interrupting was hardly a problem. Mark served a purpose in my life beyond even the purpose he served for the more typical students. They needed someone to serve as an example of what they were not, all that was uncool and thus contemptible. I needed Mark to be that person, so I didn’t have to be.

I didn’t know any of this then. I knew that I was different, but when I say I was invisible, this is barely an exaggeration. My M.O. was staying off the radar. During recess, I played alone, making up stories in my head or examining the rocks at the edges of the property. I was good at not noticing certain things. Sometimes I think I chose isolation so I didn’t have to notice it choosing me. It worked fairly well for me, as long as someone else was around to be the bad Mark.

I was returning from vacation with my family, riding in the back seat of the car, when I heard Mark’s name on the radio. The small plane his father had been piloting had crashed; Mark, his parents and his sister had all died. We had just started seventh grade, at a much larger school. He got out of it. That was what I thought.

For the next few weeks, there was a lot of talk about Mark around school. No one had anything bad to say now. For most of us, this was the first time we had known someone our own age, one of us, so suddenly gone. I wondered if the other kids felt bad about the way they’d treated him. They seemed to have forgotten all that. History was rewriting itself. For many, many reasons, probably none of them having a thing to do with Mark, my life was about to get a lot more difficult.

Why I am closing the comments on two posts

noreply@blogger.com (Bev) — Tue, 27 May 2008 18:49:00 +0000

Some of my posts are for informational purposes. Others are meant to entertain while providing insight into the life of one person on the autism spectrum. Still others are intended to incite action. In the case of the terrible treatment of Alex Barton, I hoped that those of us who blog on Autism Hub, along with other fair minded bloggers might succeed in directing some media attention to a situation that looked as if it could end up buried on page 8, never being seen by the general public, those who don't follow autism related news as closely as some of us do. I also hoped that this would offer solace and encouragement to the Barton family.

When Autism Hub played a part, along with ASAN, in having the Ransom Notes Campaign pulled, I was proud to be involved in that. While I still believe that Wendy Portillo needs to be removed from the classroom, that a public apology needs to be made, I am not proud of what this campaign has become.

I am not trying to take credit for the attention the case has gotten. I played a very small part in organizing this; others have done more to ensure that the injustice was brought to light. But for my part, I do feel a responsibility to say that from where I sit, it is time to wait. Wait and see what happens in Florida. If further action is needed, we will be here.

I have begun to consider that Ms. Portillo is perhaps a person who found herself in a job she was not suited for, without the proper training, someone who never should have been in the teaching profession. The problems which led up to the events in Port St. Lucie are systemic, and will need to be addressed at that level.

Around the web, you can find comments stating that she did the right thing, that children must be made to behave through any means available. You will also find people saying she should be harmed emotionally and/or physically for her crime. I've heard that she is undeserving of life. This is not acceptable to me.

I have made terrible mistakes in my life. I have harmed people. I have done my best to make amends for those wrongs and not to repeat the hurtful actions. I know that if my worst moments were shown to the world, were discussed on numerous sites, some with nearly a thousand comments now, I would not want to continue living. Yet I believe in redemption (not in a passive sense, but through hard work toward change) and I hope that others, including Portillo, do too.

When people start coming to my blog and talking about revenge and sending people to hell, it is time to take a break.

Sometimes the lines between right and wrong can be fuzzy, and that is not the case here. What happened to Alex never should have happened, and should not be allowed to happen again. For the sake of the other Alexes, those whose names are not in the spotlight, it is time to turn our attention toward the larger societal problems, those which allow bullying to occur, not just in one school in Florida, but throughout this nation.

This is just one autistic person's opinion.

Alex Barton Update

noreply@blogger.com (Bev) — Tue, 27 May 2008 17:19:00 +0000

Via The Daily Kos: Mrs. Portillo has been reassigned to the district office pending further review.

And from wptv.com, Melissa Barton speaks:

Edit: Why I closed the comments to this post.

Edit: An address (thanks for this to abfh) to send a card, letter or gift for Alex:

Alex is Special
c/o Barbara Curtis
15648 Britenbush Ct.
Waterford, VA 20197

Edit (May 28): Now you can send a supportive message to Alex at supportalex@treasurecoast.com

Edit (May 29): More details from the police report are available now, including this from Melissa Barton:

She told the officer that after she talked with Portillo about the voting, Portillo "blocked the door for about five minutes to prevent me from leaving the classroom with my child, who was visibly shaken by the abuse."

Memorial Day Weekend Illustrated

noreply@blogger.com (Bev) — Tue, 27 May 2008 00:20:00 +0000

Photo One: Bad cell phone snapshot of a mangled and partial slice of coconut cream pie.

This is the piece of pie I was served at a local 24 hour restaurant.

No, I didn't drop it.

I didn't eat half of it before I took the picture.

I theorized aloud (and much later) to my dining companion that possibly the condition of this pie was related to my method of ordering, which involved forming a wedge shape with my hands in lieu of the word "pie" which had temporarily escaped me.

She was sure the server was just incompetent and that my lack of speech had nothing to do with it.

I remain skeptical. Yes, it's just pie, I know.

But is it really?

Photo Two: Bad cell phone snapshot of a poster declaring: Mercury is Toxic. Get Tested! Duct taped to a pole.

Outside the movie theater downtown, surrounded by flyers advertising music and other entertainment, this poster urges all of us to have our hair tested for mercury.

The "Testing Event" is to be held at Rejuvenation Station Spa and Salon. That's a place where people go for manicures, facials, massages and such. Hmmm...

Photo 3 by Andrea of Andrea's Buzzing About. Andrea spotted this Squawkers McCaw lookalike in Arizona.

I had to look and make sure Squawkers was still here when I received this one. The resemblance is astounding, and that's not just prosopagnosia talking there.

Twins possibly? Squawkers has never mentioned a brother or sister, but then his speech is mostly echolalic.

Thanks for the smile, Andrea. I needed that.

Roy

noreply@blogger.com (Bev) — Mon, 26 May 2008 02:50:00 +0000

Roy lived the last fifteen years of his life in a studio apartment downtown. It was a clean, well maintained building on the bus line, a building with twenty-four hour security. He attended a senior citizen’s day program most days; at night he enjoyed watching sports and news programming. He had several friends with whom he corresponded by mail; he was well liked by his neighbors. When he was younger, he’d worked at a racetrack. He lived an ordinary life.

I worked in Roy’s apartment building the last four years of his life. I noticed a few things about him, the way he stood, swaying, leaning so far back he seemed always on the verge of falling over, the way he walked, his head turned down and to one side. He had an intense stare, but this was not intimidating, as he tended to direct it near, but not at the eyes of the person he was speaking with. He wore the same style of shirt every day.

Roy and I had some things in common, deeply entrenched patterns for navigating our days, and a love for drawing and coloring with crayons. Unlike most of his neighbors in the building, he took rules seriously, never leaving the community room without a lid covering his coffee, emptying his garbage daily, whether there was anything in it or not. Not once did anyone complain that his television was too loud.

Roy was a great source of information, often arriving at my office or the community area to report the latest news of catastrophic weather around the globe or to inform me of the latest career move of one of his favorite news anchors. His talk was more a series of announcements than conversation. These visits were always the highlight of my work shift.

Roy didn’t cook. He was more than willing to try it, but his sisters felt sure he would be both safer and healthier if he got some help with that. They made arrangements with a local cafeteria owner to bring him hot meals each day. On the weekends, his sisters picked up his laundry, and took him shopping or to their house or a park or the farmer’s market. Ordinary stuff.

I never asked Roy or any of his family if he had an autism diagnosis. I suspect he didn’t, and it really doesn’t matter. I don’t think his neighbors thought of him as especially different. Someone would check up on him when his family was out of town, but the same is true for many of the building’s other residents. He fit in there.

Each Mother’s Day, Roy explained to me, using the same words, that his mother had passed away. He carried her portrait with him to Mother’s Day Mass at the church he attended weekly.

Some time before he died, Roy’s doctor informed him that he had a few months left to live. The doctor took his time explaining, making sure Roy understood. He asked if Roy had any questions. He thought for a minute. He did have one. “What do you think about that new airplane?” he asked. “I heard it’s as big as two football fields.”

Roy died Thursday morning, May 22, 2008. He was 79 years old. He was my friend, and I will miss him.

Not Special: Support Alex Barton

noreply@blogger.com (Bev) — Sat, 24 May 2008 13:02:00 +0000

Alex Barton is five years old. On Wednesday, his kindergarten teacher decided to teach her class a bit about bigotry and exclusion. Unfortunately, she seems to have been for rather than against these principles. Wendy Portillo invited the members of Alex's class to state the reasons they did not like him. Then a vote was taken. By a vote of 14 to 2, Barton was removed from the class.

Since his "eviction" from the St. Lucie Co. (Florida) class he has felt "sad" and has repeated the words, "I'm not special," over and over to himself. The reasons students gave for disliking Alex included that he is "disgusting" and "annoying." Since February, the young man has been in the process of being evaluated for Asperger syndrome.

Let me be clear: I don't care whether or not Alex is assigned a diagnostic label. I don't care what he did to be classified as "disgusting." The behavior of this teacher is reprehensible. She has not disputed the allegation, but according to Port St. Lucie spokeswoman Michelle Steele, has confirmed that the incident did take place.

Please help ensure that proper disciplinary action is taken. People with differences of all sorts deal with bullying from peers every day. It is no secret to many of us that teachers and others in authority can be bullies, too. But when the bullying is directed and produced by a so-called educator, surely this must cross a line visible to all. Please take a stand against this abuse. If you have a blog, please write a little something in support of Alex Barton. Maybe he isn't special. He shouldn't have to be. He's a five year old boy, a human being, worthy of respect.

Write the St. Lucie County School Board at
webmastr@stlucie.k12.fl.us

The school's principal is Marcia Cully: (772)337-6730

Edit: A more complete list of contact information, gathered by Ari Ne'eman of the Autistic Self Advocacy Network (ASAN):

Morningside Elementary School Principal: Mrs. Marcia Cully cullym@stlucie.k12.fl.us (772) 337-6730St.

Lucie County Schools Superintendent: Michael J. Lannon4204 Okeechobee Road Ft. Pierce 34947-5414 Phone: 772/429-3925 FAX: 772/429-3916 e-mail: lannonm@stlucie.k12.fl.us

St. Lucie County School Board Chair: Carol Hilson 772-519-0397 HilsonC@stlucie.k12.fl.us

Vice Chair:Judith Miller772-528-4545 MillerJ@stlucie.k12.fl.us

Please copy info@autisticadvocacy.org on any emails you send. ASAN asks that everyone use respectful language in addressing those listed.

Edit: Please visit this post at Autistic Nation. Christschool has provided form letters which can be used to address the school's principal, superintendent, school board chairperson, state's attorney, Department of Education and news media. Each letter details the legan and ethical violations commited, and calls for the resignation or dismissal of Wendy Portillo. The letters can be modified to make a more personal statement reflective of your own views.

Thanks to Amanda at Ballastexistenz where I first learned of this.

Edit: Why I closed the comments to this post.

Edit: An address (thanks for this to abfh) to send a card, letter or gift for Alex:

Alex is Special

c/o Barbara Curtis

15648 Britenbush Ct.

Waterford, VA 20197

Edit (May 28): Now you can send a supportive message to Alex at supportalex@treasurecoast.com

Edit (May 29): More details from the police report are available now, including this from Melissa Barton: