Friday, May 30, 2008

Bullying: Resources for positive action

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.

Wednesday, May 28, 2008

The Bad Mark

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.

Tuesday, May 27, 2008

Why I am closing the comments on two posts

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

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

And from wptv.com, Melissa Barton speaks:

video

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."

Read more here.

Edit (May 30): Read commentary by Christschool on the police report here.

Monday, May 26, 2008

Memorial Day Weekend Illustrated

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.

Sunday, May 25, 2008

Roy

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.

Saturday, May 24, 2008

Not Special: Support Alex Barton

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:

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."

Read more here.

Edit (May 30): Read commentary by Christschool on the police report here.

Friday, May 23, 2008

Work With Me

Autism: Work With Me, Not On Me. This is the theme of the Summer Autism Conference at University of San Diego’s Autism Institute. Quite a switch from the usual approach, but that’s what you get at USD: true collaboration and support, rather than attempts at changing, fixing or eliminating autistic people.

I am happy to report that a group of Autism Hub bloggers has been invited to present at the conference to be held June 23 through 25. As some of you know, Steve, Do’C, and I were at the winter conference for a breakout session. This time, we will do two breakouts and a full session, presenting to the entire group of conference attendees. Rounding out the group will be Estee Klar-Wolfond and yep, you heard right, Autism Diva.

The conference will be held at USD’s Joan B. Kroc Institute for Peace and Justice. You can find the daily schedule here and a brief description of our presentations here. I hope that some regular Hub readers will be able to join us to discuss some important issues, including self-advocacy, parenting, acceptance of differences, and how to tell the difference between science and science fiction.

Again, we have Steve D. to thank for working with the folks at USD to enable our participation. There is still time to register! Join us there if you are able, and please help us spread the word.

Wednesday, May 21, 2008

Normal

Steve D., of One Dad's Opinion, recently posted about the definitions of normal, human, and fully functional. He and and some other bloggers had been asked by a researcher to define the terms independently and relative to one another. I also participated in the survey. Not surprisingly, my responses and Steve's share some common territory, diverging more stylistically than pragmatically. Of course, you have read his post right? Well, then go read it, okay? I'll wait.

Did you read the comments? There were some good responses in the comments.

Anyway, I figured my response is a bit too long to put in a comments section, so I told Steve I'd post it over here. As with everything, there's more than one way to answer a survey. Here's mine:

Normal:

Pertaining to norms, that which is average or close enough to it, usually not more than one standard deviation on a bell curve. Some people use the term normal to express value judgments, or in attempt to enforce conformity. People fear not being normal. It’s primitive, I think, the fear of exclusion, because in difficult times exclusion can mean death.

We live in difficult times.

Fully-Functional:

To be fully functional is to do whatever your society expects of you in the ways determined by those in power, who necessarily must be within the one standard deviation. To be a fully functional citizen, one must work at a job and pay her own way. If you don’t have a job, it is your fault. The manager looked at you and said, “I don’t think this is going to work out.” The manager is fully functional, in the Functionalist sense. He is keeping the riff-raff out.

Human:

Homo sapiens. A person. A man, woman or child. Except for Hitler. Oh, yeah, and Osama Bin Laden. And Charles Manson. Child abusers, sexual predators, sociopaths, murderers. These are a few of the labels people use alongside words like “inhuman” or “monster.” The great Me / Not me dividing line. Which side am I on if I laugh when the others are crying?

Normal, Human:

I was a normal human, but broken. Couldn’t get it together. Defective. You know you could do this, if only you tried. Yes, you are probably right. But I don’t know how to “try.”

Normal, Fully Functional:

I will work extra hard. Yes, I will arrive thirty minutes early. I will skip my break. I will volunteer for holidays. Then you will like me and keep me at this crappy job forever.

Normal, Normal:

You are perfect as you are. Take this pill. Now you are different. Now you are perfect as you are.

Human, Human:

Have you heard the story of the girl who cried all day, and I am not exaggerating, I mean all day, from 8AM until 6PM and maybe even longer, over a sad song on the radio? She was autistic, you know. Her parents did not know what to think. Especially later, when she didn’t cry at funerals. They didn’t know what to think. I will tell you a secret, though. The music at the funeral home was not very good. It wasn’t functional.

Fully Functional Normal Human:

The pearl is in the river. There is a light that never goes out. Have you ever eaten a pine tree? Ticket! Ticket! These are a few of my scripts. Speech is sometimes required. This is how I can function.

Human:

Is not to have Super Powers. I have been invisible. At night, sometimes, too, I have flown.

Human Normal Human:

I tell you I have never wanted to be. Sometimes it would have been nice to be considered to be it but not to be it. No. I never wanted.

Normal Human Functioning Fully:

Eat. Work. Sleep. Play. Use the bathroom. Don’t forget. Don’t forget to flush.

Normal:

That which is broken.

Normal:


Losing its meaning.

Normal:

Laughing at videos of people slipping on ice.

Human:

Turning away.

Normal:

Turning away from human turning away from normal laughing at people slipping on ice.

Fully functional:

The leg will be fine in a few months.

Normal:

I am so happy it wasn’t me.

Human:

Ouch for you, ouch for the other!

Fully functional:

“They, since they were not the one dead, turned to their…”

Normal:

Nonsense! You are hereby excluded.

Human:

Ouch.

Normal:

Boo hoo! Grow up, why don’t you?

Human:


(Quiet, invisibly quiet, invisible)

Fully functional:

Choosing.
Choosing to live anyway.
In difficult times.

Tuesday, May 20, 2008

Seidel Conspiracy Trading Card



Possibly the first in a series of Autism Hub trading cards. To have your own card included in the set, (1) do something(s) extraordinary, and (2) be treated abusively for the thing(s), and (3) be dismissed as someone who couldn't possibly have done the thing(s) himself or herself. Also be a member of Autism Hub. For anyone who finds these standards too demanding, you can always make your own. You can nominate yourself or another hub member for a card in the comment section here.
Disclaimer: The woman pictured is not actually Kathleen, but an anonymous 1960s housewife "type." The man is not Kathleen either. He is Glen Campbell who sang "Dreams of the Everyday Housewife," an ode to egoism as much as to sexism. The rat could not be reached for comment. W e are unable to state with certainty that the rat is not actually named "clifford." The money and drugs are imaginary, part of the "dream" cooked up by someone or other. No autistics were harmed in the creation of this virtual trading card.

Monday, May 19, 2008

This Autism Situation

In today's Courier Journal (Louisville, KY), is a follow up to the story of Matthew Montgomery, his mother Jeanie, and an Oldham County school. During a single fall semester, Matthew was placed in a small time out room (or closet, depending on whom you ask) nearly eighty times. Sometimes he was locked in. Sometimes he came home from school with cuts and bruises. In one case he was taken to a hospital where doctors suspected abuse. This is called education.
Mrs. Montgomery, quite understandably, decided to homeschool her son. The school has been clear: Matthew is to return to classes immediately. On May 8, Jeanie received a written warning, a final notice that she and her husband will face legal action unless they comply.
Could the problem be that the Montgomerys have not followed the correct procedures? No, that's not it...
From the Courier Journal:
To receive home services, state law requires a signed physician's statement that the child's condition "prevents or renders inadvisable attendance at school."
Montgomery said she has provided two such letters from Matthew's pediatricians, the last one asking for more time for an independent psychological examination of the child. A March 28 letter from Dr. Jeff Wampler, with All Children Pediatrics, cited Matthew's autism and other health issues, including allergies and gastrointestinal problems, as a reason for requesting temporary homebound services.
On an application the school requested, Wampler also cited investigation for abuse at school."In a follow-up letter to Oldham school officials on May 1, Dr. Jeffrey Burton said he believes Matthew may be suffering from fear and stress over his experiences at school and requested time for a psychologist's evaluation.
"I would encourage you to allow Matthew's parents more time and latitude before you start any type of legal proceeding," Burton wrote. But Coorssen said the school system does not believe the physicians' letters adequately detailed Matthew's medical problems.
"Those are just blanket statements you can get from anybody," she said.
Now, I'm not an expert in this area, far from it. But it would seem logical that recurring bruises and abrasions, isolation for extended periods of time, these sorts of things in themselves are the "conditions" clearly making this young man's attendance at the school "inadvisable." Logic, though, has no place in the paper factory. (Please read this post at Ed's Autism Page. It's important.)
The lessons Matthew has learned from his school are not the kind that need more reinforcement. There will be plenty more chances for him to learn about cruelty, incompetence and intolerence.
"These are not easy cases, believe me," said Fendley (the county attorney in charge of truancy cases). "This autism situation is going to be a difficult one."

Sunday, May 18, 2008

Banned!

In 2008, there are many places within the community where autistic people are not welcome. I know this. I'm used to the idea, and often speak about the problems created by our society's disgraceful "insistence on sameness." Behaviors that are different, unexpected, outside the norm, have been used as excuses to remove autistics from stores, airplanes, playgrounds, just about any place you can name.
Somehow, though, this one took me by surprise. The family of 13 year old Adam Race has been ordered not to return to their Minnesota church. Served with a restraining order after attending mass on Mother's Day, and threatened with arrest this morning, the Races found it necessary to attend a different church.

What are they teaching at the Church of St. Joseph? Whom or what do they worship there? Church officials claim the young man's behavior is disruptive and frightens the other parishioners. I have to ask...somebody has to...what would Jesus do?

video

Friday, May 16, 2008

What were they thinking?

On March 28, Jypsy e-mailed Jonathan Howard regarding the Run the Dream campaign. She wanted to let him know that the language on his website asking for help for people experiencing the “burden of dealing with autism” was offensive. Explaining that she and her sons are autistic, she asked, “What, exactly, to you have against people like myself and my 2 sons that you want to prevent people like us from existing?” She also inquired as to what plans Howard had for funds raised by his run across Canada. You can read more here.

No response was made to that e-mail. Then on May 9, Jypsy and Alex were invited by Mike McCarther (Run the Dream’s production manager) to meet Mr. Howard. She declined, referring him to the earlier e-mail. This is the reply she received:

From: "Mike McCarther"

Haha oh sh*t...

That’s all.

Later she received an abrupt non-apology stating simply that the first message was in error and should be disregarded.

It leaves me wondering, what were they thinking?

How many times throughout the average person’s life does she hear that autism is a tragedy, that autistic people are empty shells, kidnapped, soulless, missing, stolen, damaged, defective, poisoned, no longer there? Less than human? How many repetitions does it take before something is “learned” or taken as a fact? Why then, would it be necessary to treat such people with respect? They wouldn’t notice would they? What better target then, to bombard with the anger and frustration we all have stored up? Need to blow off some steam? Here’s someone who looks human, but is actually “missing.” Have at it.

If only it ended at rude language, well, that still wouldn’t be acceptable, but we all know it doesn’t end there. The consequences for people so thoroughly devalued by a society are grave and are well known. Still the major “charities” persist in the rhetoric of devastation, believing that somehow the end they seek justifies any means.

I belong to a group said to be lacking in social skills. Still, had I made such an “error” (and I can’t imagine who the intended recipient of that e-mail would have been), I would have known that an immediate, direct and personal apology was necessary. Though supposedly lacking a theory of mind, I’d have realized that I’d hurt someone. And even if I had no greater empathy than shown by McCarther and his team, I would still deserve to be considered fully human.

Conspiracy Theory



The latest in environmental trigger suspects: pet shampoo.

Thursday, May 8, 2008

The Mystery of Parental Psychiatric Diagnoses

“Let me see if I’ve got this right,” Encyclopedia Brown said. “Your brother is autistic?”

“Yes,” replied Sally, “Though we prefer to say he ‘has autism.’”

“I see,” the detective muttered, “How do you think this could have happened? Was he vaccinated?”

“Of course he was!”

“Thank God! I wasn’t going to risk getting measles for a 25 cent fee!”

“But that isn’t it,” Sally retorted. “I’ve come to you with a new theory. Something no one has ever thought of before.”

“How exciting…what is it?”

“My parents are the cause of it! I’ve never told anyone this, but my father is schizophrenic. That’s why he walks in circles mumbling, repeating the word ‘ticket’ over and over. That’s why he avoids crowds and covers his ears when you turn up the TV!”

“Schizophrenic, eh?” queried Encyclopedia Brown. "Does he have any other odd habits?”

“Yes! He collects wheels from antique baby buggies. But only a very specific kind. He takes pictures of brick walls. If you ask him a question he’s not expecting, he’ll answer with a line from Leave It To Beaver or Petticoat Junction. He’s clearly mad.”

“I see, I see,” said Encyclopedia slowly. “In what year was he diagnosed?”

“Sometime in the late 1970s. There was a lot more schizophrenia then, you know.”

“Has he had hallucinations? Delusions?”

“Not that I know of.”

“I think I’m getting the picture…your mother, doesn’t she have a mental illness of some sort?”

“Oh, you mean that little obsession with The Battle of La Belle-Famille (July 24, 1759)? She hardly ever talks about that anymore.”

“I didn’t realize...but I mean…she forgets to comb her hair. She wears the same clothes for days at a time…”

“Yes, I suppose that is a bit unusual for someone with OCD.”
"Last week when I mentioned it was 'raining cats and dogs' she seemed really scared for a second."
"Oh, she was joking around! I'm...pretty sure..."

“Has she always been this way?”

“Yes. Plus as a child she wouldn’t talk hardly at all. Elective mutism they called it.”

“I think I know why your brother is autistic.”

“Oh, please tell me, Encyclopedia Brown!”

What did Encyclopedia Brown see?

Sunday, May 4, 2008

Major Stereotype Violation (Party Variety)

Seven years ago, in a moment of confusion, I decided to throw a Derby party. The food was elaborate and perfect, all prepared fresh just hours before the guests arrived. The people invited knew and liked one another. There was sunshine, music and of course the Kentucky Derby to discuss, place bets on, watch and then discuss some more. Among the guests were one of the best storytellers I have ever known, several people who had led interesting and adventurous lives, and one of those people sometimes described as “never [having] met a stranger.” The party was a social disaster, including possibly the longest “awkward silence” ever to occur in a group of twelve people. Following that pause, each and every guest found that suddenly it was time to go; they exited en masse, leaving me puzzled at how such a grand effort at “being social” could have failed despite every precaution.

At the time, I didn’t have a name for what separated me from them. For the most part I didn’t mind it—the seat next to me, usually remaining empty wherever I went, provided a welcome visible marker for my personal space. In truth, I never wanted a large group of friends around me, just a couple of people (one at a time, please!) with whom to engage in philosophical discussions or compare observations of the many incomprehensible aspects of human behavior. Groups of people, even those made up of perfectly fine individuals, have never appealed to me. With groups come the dynamics of “othering,” and the insipid jockeying to be the first or the best, at least at one thing. And this is only a small piece of why parties are not “my thing.”

The true purpose of that 2001 Derby party was to prove…well, I’m not sure what, but something… to certain people around me who were sure that I could overcome my brokenness (whether this was called being “shy,” “distant,” “hostile,” “superior," "mentally ill" or “afraid of life” varied by time and by critic and the mood of the speaker) if only I would make the effort. These were people who claimed to like me, while simultaneously asserting that my entire being was little more than a collection of attention-grabbing, fear-pandering character defects. They may have thought that they liked something they thought of as me, but this was a myth. That something, a me without substance or personality, didn’t exist. And for my part, for buying into this, I ended up proving only that I was destined to fail at socializing no matter how hard I might try.

The party was based on a lie—that I wanted to be somehow different. What I really wanted, ever, was permission to be me. When I didn’t get it, I rebelled. And people saw the anger, but few ever understood its cause or true nature. Some saw a person who was “trapped” within herself, unable to reach out to others. Some saw a person who disliked or even hated people. Pretty much everyone agreed that I needed some sort of treatment—therapy, medication, maybe religion—to make me whole, to make me really human. The party was in part an experiment. It took a few more years for me to fully analyze the data.

Yesterday, there was another party. There were some simple foods, a few I made, some others purchased from a deli. There were burnt hamburgers, problems with the sound system, rain clouds, and a robotic bird who squawked at several people. Many of the guests had not met one another before. All they had in common was that they are people who have shown acceptance for the person I really am. I had a great time. The guests seemed to enjoy themselves, too. I think this one was a success.

These are some of the things that helped me, that made this one different. First, a couple of generous friends who allowed me to host the event at their home made this possible. Having people in my own living space has always been difficult to intolerable for me. I feel exposed, as if someone flipping through my CD collection or noticing the pattern in a dish towel might as well be rummaging through my underwear drawer. So having the party someplace else is a prerequisite for relaxing. Second, I made sure to include children under 10. These are the best guests you can have at an outdoor party; there is so much to be learned from them about how easy it is, really, to have fun. Content for hours with some sidewalk chalk, a ball and a small trampoline, they set the tone for the rest of us to relax and enjoy ourselves freely.

Another thing that helped was allowing people to help me. My friend’s daughter, a young adult I’ve had the pleasure of knowing for most of her life, cut vegetables, arranged the table, greeted guests and took photographs. All without being asked. She’s the kind of person who sees what needs to be done, and then does it. Things would not have gone as smoothly without her. Thank you, Dawn! Others pitched in too, bringing ice, cake, appetizers, a beautiful arrangement of fruit. Everyone assisted with the introductions, and a couple of folks volunteered to help out with the grill.

Most important, though, was the guest list. When I thought about whom to invite, I realized just how much my life has changed over these last few years. I have people around me now who accept me as an autistic person, as myself, whether they use the word autistic to describe me or not. They know that I will sometimes make bird sounds or say things that don’t make sense to them, or say nothing when something is clearly expected. Two people I had never met in person drove 400 miles to attend. As a result, a friendship already deeply important to me took on additional dimension and meaning. Another friend drove 70 miles, despite having other obligations for the day; he gave me a card with a parrot on it. Another friend brought a beautiful parrot piƱata, knowing I would never allow it to be broken.

Some of my friends are autistic, but most are not. Most of them are just people who don’t mind discussing soda can collections, floor tile photography or the populations of major U.S. cities. People who speak to Squawkers McCaw, and look out for him when the wind kicks up and threatens to knock him from his perch. All of them strong enough to withstand some moments of silence, some expression of difference. People who were possibly surprised, yet not overly alarmed, that a few minutes after the ending time clearly stated on the party invitation, and without a word of warning to the few remaining, the host of the party had already left the building.