Another brick in the wall

They are building a wall to keep out the undesirables. No, I’m not talking about the inane project of the US government (don’t get me started on that, okay?) but DAN! supporters who seem to think a brick wall will help stop the “tsunami” of autism threatening to destroy us all. For fifty dollars, you can have your own brick in the “Bernie’s Wall,” memorial and help pay for new Rimland Center in Lynchburg, Va.

Note that the brick in the upper right corner reads “0 in 150” and below it, an arrow points from “our goal.” Gee, thanks. Oh yeah, the center in Lynchburg is even on Confederate Blvd! I swear I could not make this stuff up.

Bricks R Us is the company selling the opportunity (50 dollars for a brick with your name on it). Seriously, someone thought I could write a parody on this? Could it get any sillier?

No, I don't think so. So I've decided not to even try. Instead, I'd like to start a counter campaign. As some of you know, brick walls are a special interest of mine. I like to draw them and take pictures of them. I don't like seeing them fall in with disreputable company. I am asking anyone who finds the reference to "zero in 150" offensive to join me in a public art project. It works like this.

Purchase a brick in this wall for zero dollars:

Click Here for larger view

Instead of money, your contribution will consist of your name or the message of your choice on your brick. You may choose the color and location (contingent on availability) of your brick, even the type of font you'd like or a simple symbol in lieu of words. When the wall is full, I will format it in a poster suitable for printing out and posting on walls or otherwise distributing. These could be left in libraries, bus stations and waiting rooms, wherever we go. The poster will include a brief explanation of why "zero in 150" autistics is a bigoted, offensive, reprehensible sentiment.

This is intended as a grass roots public art/advocacy project which will require 36 participants to launch. Everyone is welcome to participate and more bricks will be added if there are takers. This is undertaken with no expectation that anyone will listen. It may well be a waste of your time. If you are willing to participate anyway, leave me a comment or send an email with what you would like your brick to say. No threats of violence, stated or implied, toward anyone, please. These will not be accepted.

Thank you, Autism Diva, for bringing Bernie's Wall to my attention.

True Social Stories: Perseveration in the Workplace

Due to time considerations, I had to leave this story of perseverative behavior out of my talk for APSE.

It wasn’t very funny at the time. I had something of an obsession with scrap paper. Tickets, old maps, labels from cans of vegetables, beer coasters, cardboard boxes, any kind of paper with unusual or interesting text or texture or certain muted colors. Often, I tore them up and used them to make my collages. Sometimes I just added them to stacks of other papers I kept around to look at. I often spent my breaks from work at the restaurant scrounging or sorting through the day’s finds.

Usually these came from discarded boxes or other containers I grabbed before they landed in the garbage. Sometimes I’d patrol the edges of the property, seeking out those especially valued scraps which had been rained on and run over by cars. On this particular day, though, something had caught my eye, a dog-eared invoice sticking out of the trash can in the manager’s office. The manager on duty was one I had a good relationship with, but he seemed aggravated that day and chased me out of the office. I waited awhile before I went back in and removed the trash bag, replacing it with a new liner. I took it outside, and passing the dumpster, delivered it to the back seat of my car. Returning to work, I was happy to know I’d have the bag to sort through later at home. Perhaps I’d find something even better than the intriguing invoice.

About an hour later, a co-worker mentioned she’d seen something odd—the manager and the district manager were outside standing in the dumpster, digging around in the garbage! What were they looking for? Apparently, $2000 dollars was missing from the previous day’s receipts. There was some possibility someone had hidden money in the trash and carried it out of the restaurant.

I couldn’t make this stuff up.

I confessed my “crime” immediately and told my boss I would understand if he needed to search my car or have me questioned by the police. That wouldn’t be necessary, he said. Somehow, he knew I didn’t take the money. Explaining it to the district manager would be harder, but at least there were plenty of people who could vouch for the fact that I often put trash in the back of my car. “She’s weird,” they would say. This time, I was glad to know that they would.

Got Insight?

The National Autistic Society (UK) is asking people to Think Differently about Autism. Your insights are requested. I have added my own statement to this board and hope that other autistic people will do the same. The reply message stated that it may take as long as a week for the post to appear. Right now, they have four (4) perspectives up, all contributed by parents of autistic people. Be warned: though the campaign seems very autism friendly, at least in comparison to those of other autism "charities," you may encounter the words "devastating," "nightmare," and "poo" if you go there.

Please visit this link and let the NAS know what autism means to you.

The Planet APSE

This week I gave a presentation on autism and no one, not even one person, during or after the presentation, or even the next day, mentioned the movie Rain Man to me. This is a first. Rain Man has come up at every talk I've done before this, through, I promise, no fault of my own. I have always tried to respond politely that yes, that is one way autism can look, one of many, many ways. It was nice not to have to do that.

What was even better, what was amazing to me about this particular group, was the way they listened. No one argued against what I said about person-first language. Instead, someone asked me afterward how professionals could help spread the word about the preferences of autistic adults without appearing to be ignorant of the more accepted standards used in particular fields. No one even tried to steer the conversation toward the imaginary epidemic, though I'd opened the door for them to do so. As a matter of fact, every question directed toward me was thoughtful and relevant to the materials presented and given in a spirit of obvious respect for the autistic persons in the lives of the askers. I felt almost as if I had landed on a different planet.

The name of this planet is APSE (formerly the Association of Persons in Supported Employment). These are the folks who work with employers to develop, facilitate or create jobs for people with a wide range of what society views as disabling conditions. What they do best is listen. They listen to what employers need and to what the individuals they serve need and value and want to do. As a group, they understand the true meanings of words like "ally" and "empower" and they know how to step aside when they start getting in the way.

The talk I gave this week was for the APSE conference in my state. It was about Autism at Work, and partly based on my personal experiences and those of other autistic people I know. It was attended by a variety of professionals, several of whom also have autistic family members. None of them said anything like, "You are not like my child; my child is really autistic." In other words, they didn't disrespect, disregard or call me a liar. They listened. They shared their own stories with me. They waited patiently and respectfully as I tried to remember the words for things.

Not everyone was so perfectly nice, of course; these are human beings after all, and there was an incident I didn't appreciate in the least. I may write about that in a day or two, after I've gotten some distance from it. It was a different experience overall, though, and one I'm very happy to have had.

I made it through almost the entire three days without a word about Hollywood portrayals of my people (other than Jerry Espenson, of course). Then on the way out, someone stopped me. "Have you seen the movie..."

I was reminding my eyes not to roll. No worries, though. She just wanted to know if I'd seen Mozart and the Whale, if I'd liked it. I gave it a mixed review. At least it was something from this decade.

On repetition (again)

If I’ve said it once, I’ve said it not nearly enough. I like to repeat things. A pastime enjoyed by many children, AS and NT alike, is that continued repetition of a word or phrase intended to drive it into utter meaninglessness. Lunchbox lunchbox lunchbox lunchbox lunchbox lunchbox lunchbox lunchbox. What is lunchbox anyway? Is it really one word? Or do you have to write “lunch box?” I don’t know anymore. This is called semantic satiation. My mother said I would lose my mind if I didn’t cut it out. (I think she meant she would lose her mind if I didn’t cut it out.)

The opposite of semantic satiation is semantic generation, in which a nonsense word or syllable seems to take on meaning from repetition. Firkel has a meaning to me, but I can’t tell you what it is; there’s no corresponding English word I know of.

I have to wonder sometimes, following one of those days when everyone everywhere seems to be talking about autism, if something similar to semantic satiation has happened to the word. Words do evolve and take on new meanings, but something entirely different seems to be going on when large numbers of people are pointing to something meeting the exact dictionary definition of X and saying “this is not the real X”. A good word for this might be “gaslighting”, an attempt to make another person doubt her sanity.

Then there are the words which fall out of favor due to “guilt by association.” “Awareness” is one of those for me. It used to mean awareness, but now when I hear it, I expect something ugly to follow. “Autism Awareness” seems nearly always to mean “awareness of autism, which we hate more than cancer.” Not just individual words, but all sorts of ideas can be promoted from nonsense to apparent sense through frequent repetition.

If my meaning isn’t clear here, don’t worry. I’m sure I’ll be saying it again.

For parents

I am not your enemy.

If your child is autistic and you want a better life for him or her, I am not your enemy. I want a better life for all autistic people. However they communicate, however well or poorly they score on standardized tests. Whether or not they have medical problems in addition to neurological differences, whether the diagnosis is autism, Asperger syndrome, PDD-NOS or something else altogether, I want the best possible life for every person on the spectrum.

By “better life” I mean physical and mental health and I mean freedom from harassment and discrimination and institutionalization. I want respect for your child and accommodation as needed and I want them to have jobs if they want jobs and friends and partners if they want that. I want your child to be happy and healthy.

By “healthy” I do not mean non-autistic. Autism is a lifelong neurological condition, not a disease.

I have never opposed the legitimate treatment of legitimate medical problems. Most children and adults go to the doctor when they are ill. I object to the characterization of autism itself as an illness. I object to the treatment of intestinal problems being characterized as “curing autism” and I object to the marketing of expensive, experimental treatments to desperate parents. More than that, I object to parents being told they should be desperate.

If you have a child who is autistic, I object to people saying that your child has no soul, or is a train wreck, disaster, walking nightmare or empty shell. I know that your child is a valued human being. I know, too, that you want the best for him or her.

I am all for teaching kids to communicate. What I object to is that teaching and learning for autistic children are packaged and marketed as “therapy”, while teaching for non-autistic children is called “teaching." I disagree with anyone who believes that speech is the only “real” way to communicate. I think that children need time to play and relax as well as time to study and learn.

When your child grows up, unless I am mistaken, he or she will still be autistic. I want a safe and accepting world for the adult (s)he will become. I want a world where people will employ her, take him out to dinner, appreciate them for who they are. I know that many people will see this as foolish and naïve. I’m okay with that.

But I am not your enemy. If you have a child on the spectrum and are hoping to cure him or her, hoping to get rid of the autism, I don’t want to argue with you. Most likely, you and I don’t even use the word “autism” to mean the same thing. If you are one of these parents working to change your child, know that I am working, too. If your quest to change the course of autism fails, perhaps the quest to change societal attitudes will fare better. In which case, your autistic child might have a less hostile world to live in.

That is why I do this.

Power outage

I said I wasn’t going to do it again. And to a large degree, I didn’t. The last time I participated in a discussion at another blog where someone refused to hear my point, I ended up wasting a whole day and becoming terribly angry and frustrated. The issues there were (from my perspective)—Are there real consequences to what people say about autistic people? Isn’t everyone’s opinion equal? Does the autistic voice count for anything in answering this question? In that discussion, a person kept saying (in various words) No, Yes, and No. And I kept saying Yes, No and Yes. It was a stalemate and the longer I participated, the more tired and frustrated I became. I got very little “real work” done that day. And I felt like I might as well give up trying to talk, even through writing. My voice wasn’t strong enough.

Yesterday, I had the chance to see what I’d learned from that earlier experience. In this case, the questions were (from my perspective)—Does it matter what non-autistic people call autistic people? Isn’t everyone’s opinion equal? Isn’t this a trivial matter anyway? Does the autistic voice count for anything in answering these questions?

This is all about power. There, I’ve said it again. This tends to make people angry. It’s not my fault, they say, that I am ____________(white, male, heterosexual, middle class, without a disability, etc.) and I would never, ever use this unintentional status to oppress anyone. Yes, that’s right. You didn’t ask for these things. I know this. I have a couple of them myself, and I didn’t have to ask for them. That’s not the point.

The point is that I am not forced to deal with discrimination daily over being Caucasian. A man usually doesn’t have to worry as much about going out for a walk alone as a woman does. Unless maybe he’s a gay man. Or a man belonging to another minority group. And it isn’t the straight white male’s fault that there are predators who see being female or being gay as a reason to hurt someone. But if I tell the straight while male that I feel afraid and he says I’m being ridiculous or oversensitive, that person is abusing a position of power. Part of having power is not having to think about it. Denying that the power exists is in itself abusive because it does nothing, not even the smallest, easiest, least expensive thing, to correct the imbalance. It is a lie.

The issue is the same with people who like to say, “You are not a real autistic because you can do X”. Well, the people with the authority to diagnose say that I am. I say that I am. Why does anyone else think their opinion should have any weight? And then there are those who, over and over and for our own good, insist that “autistic” is a bad word. Or want to know why on earth would I want to make such a big deal of this when there are real problems to be dealt with. Sigh…

There are some straight white males, without (known to me) disability labels who have earned my respect through the way they acknowledge the power imbalance, the way they defer to persons in the categories being discussed. I’m not going to name names because I am sure to leave someone out, but there are a number of persons writing on Autism Hub who understand that listening is at least as important as talking. I am happy to have these allies. They do what they can, which is to say to the others with the unrequested unacknowledged privilege of power, Hey, why don’t you try listening to the people you are talking about? It’s just common sense, isn’t it?

I didn't let it get to me (much) yesterday. Some people are never going to listen. I can't spend my energies arguing with them. That's a waste of what power I do have. This is for the ones who haven't made their minds up yet. Call me Autistic.

Slippery slopes, canaries in coal mines, mixed metaphors

In working with employers to promote the inclusion of more autistic adults in the work force, a number of stock responses and arguments tend to come up repeatedly. One of the most persistent obstacles, though, may be the often unspoken “slippery slope” concept. The argument is that if one permits accommodations to workers with “invisible” disabilities, then everyone will want something, and eventually the business will not be able to support these varying demands and its structure will collapse under the weight of all these differences.

To stay within the legal bounds proscribed by the ADA, accommodations must be considered “reasonable” and not create “undue hardship.” Major structural changes requested of small business owners are often deemed not reasonable, and these are the sorts of things employers can discuss with impunity. The slippery slope argument is not something I hear much in the context of these discussions, but rather something I know about from more casual talks with acquaintances, some of them in management positions, and from my time as an unidentified Aspie in various workplaces.

As a person without a known disability, I was privileged to hear the conversations about the “others”, the trouble-making sort who were always asking for accommodations they didn’t (according to the bosses) really need. In the 1980’s, employees of the company I worked for were routinely assigned to less desirable positions or given difficult schedules following such requests. One man had a letter from his doctor, stating that he was to wear a certain brand of athletic footwear, despite company policy to the contrary. A few weeks later, he was moved from a department he loved to one he hated, though still in the public eye with the “unacceptable” shoes. When that didn’t make him decide to leave the job, his hours were changed, too.

This isn’t the worst or most recent offense I’ve seen, not by a long shot. It’s just one that haunts me for some reason. I was in the office with the manager and Human Resources person when the doctor’s letter was delivered. I had no right to know what it said, but they discussed it in front of me anyway. I was frequently invisible in those days. They had a laugh at his expense and immediately began planning his punishment.

After all, what could they have done? What if everyone decided to get a doctor’s note declaring a need for athletic shoes, just in order to be comfortable? The dress code might become meaningless, unenforceable. How could people be expected to spend money in a store where the workers wore sneakers?

Of course, no profits were at stake, not really. These people had the sense to know that the footwear of sales clerks was not a major factor in consumer spending decisions. It was all about power. If any rule could be questioned or amended for any reason by anyone, then the power of the few to rule the many would be weakened. And this, they could not have.

The fear persists among managers today, in all sorts of businesses. People with so-called invisible disabilities threaten the status quo. They can “get away” with things others can’t. To compound the insult, their managers can’t even explain to co-workers why one worker is being given “special treatment.” It’s all very threatening to the power structure.

Add to the mix a condition like autism, said by many to be a tragic, harrowing condition, a nightmare few ever escape, and well, you can just imagine the employers lining up to take advantage of our abilities! Or maybe the diagnosis is Asperger syndrome? What are they likely to have heard about that? Either we are rude and impossible to get along with or just a bunch of fakes looking for sympathy for the same traits everyone has. And who knows what we might ask for, once we’ve gotten in the door with an officially sanctioned diagnosis?

Some people who are convinced that environmental toxins are to blame for the higher reported prevalence rates for autism like to use the canary in a coal mine analogy. They believe that autism may be a warning sign of even worse “diseases” to come, brought on by chemicals, pollution and various mismanagement of the earth and its resources.

Of course, I do not agree with this position, but I do find the canary image useful to this discussion, so I’ve decided to borrow it. Here the canary is the worker. The coal mine is the toxic social environment we have created, with its rigid insistence on conformity and sameness. The idea that we all can and should behave, function and look as much alike as possible is poison to social and cultural diversity. A system based on fear and false assumptions has emerged and this deserves to be dismantled.

I would like to think that enough canaries have been sacrificed already, that the unemployment rates among autistic adults could stand as notice that perhaps our society’s acceptance of all types of diversity needs a big boost. What’s so slippery about accommodations anyway? Many of them cost very little and increase overall productivity. Sure, not everyone can have the corner office. But couldn’t we all have respect, acceptance? Or isn’t there enough to go around?

Found: Autistic adults

(Click to enlarge)

Who's a freak?

Thanks to Leif Johnson for the photo of the freaky woman

It's a straw, straw world

Not long ago, on a distant blog, the argument was said to be re-forming. This is a world where glittery bracelets and reconstructed faces are all the rage, a place where serious discussion of autism seldom occurs. I visited on the recommendation of a colleague from this planet, remembering to bring with me all the protective gear I’d need to function in the lighter atmosphere.

This is what I saw there, along with some other…stuff.

32.
Autism may not be curable, but it is treatable. Hundreds, if not thousands, of children have lost the autism diagnosis using the same treatments as Jenny McCarthy. These treatments are described in the book, "Changing the Course of Autism; A Scientific Approach for Parents and Physicians," by Dr. Bryan Jepson. Oct 6 07, 6:52 AM
33.
Most people on the autistic spectrum aspie /autistic/aspergian take great offense to the notion we should be cured. We hate groups like Autism Speaks and Cure autism now. Please see aspiesforfreedom.org and celebrate autistic pride day. Oct 6 07, 7:48 AM
34.

(Same person as 32) (Thirty-three), I don't want my child to be a
different person--I'm not trying to change him. Research shows that the majority of children with autism have bowel disease and poor immune function. I think it would be irresponsible not to do my best to get him as healthy as possible. Not treating IBD just because he has autism would be nuts--don't you think? As it happened, when I started treating the IBD, his tantrums disappeared. His tantrums had always frightened and embarrassed him. Plus his constant stomach and headaches disappeared. He's still the same person, but his quality of life improved pretty dramatically. I think all mothers should do everything in their power to enable their children to have the best possible quality of life. I assure you, I'm not trying to turn him into the prom king or the captain of the football team--I think he's wonderful.

This was the entirety of the discussion between these two. Thinking I must have missed where (33) said that (32/34) should not address her son’s GI distress, or try to keep him healthy, I looked back through the comments. Nothing. I checked the DSM again to make sure I knew what the word “autism” meant. I checked the ICD-10 for good measure. No, tantrums, stomachaches and headaches do not appear to be the criteria for "the autism diagnosis."

In short, the faraway blog was no different from what I see every day. The straw men there just were not dressed up as nicely. Perhaps the fashion icons who rule that world may be able to help them “get their bling on."

What's the story?

Who has a soul?

When I was growing up, my mother was a “poodle person”. The first one I remember was Pepper, a black and white toy, and Pepper was followed by Dusty and Boots, also toy poodles. Each of these, in turn, was given away to other family members or friends better able, apparently, to tolerate their bad behaviors. Dusty chewed furniture and Boots urinated on my parents’ bed. I don’t remember what Pepper did wrong; it was a long time ago.

Dad liked bigger dogs, and later we got our first Doberman, Duke. Duke lived with us for a couple of weeks, before Dad took him back and traded him for Koko. There was something about Duke’s ears that wasn’t quite right; he would never make it as a show dog. Koko, on the other hand, was perfect. A few years later, Koko got sick. He started running around in circles, biting his side. The vet found he had an enlarged spleen, and one day when I came home from school, Koko was gone.

Then there was another Duke, this one a St. Bernard. Duke stuck around until he started digging holes in the yard, then went to live on someone’s farm. I had always wanted an English Sheepdog, so we got Aristotle. Eventually, he got very large, as Sheepdogs often do when they’re no longer puppies. He went to a farm, as well.

There were others, too, but why go on? I remember when I was very young, asking my mother if dogs went to heaven. She said that she didn’t think they had souls like people do. I was glad I wasn’t a dog. I was pretty sure I wasn’t going to be given away because I got bigger or misbehaved. Maybe this had something to do with being viewed as having a soul.

I hurt for the autistic children whose parents and doctors claim that they don’t.

What works for you?

I have the opportunity to write an information packet on autism for employers and Supported Employment service providers. I will also be making a presentation on autism in the workplace at the state Supported Employment conference. I’ll be discussing my own experiences as well as presenting a review of relevant literature.

I’m interested in hearing stories from other autistic people regarding employment, and any suggestions you would like potential employers to hear. What have you found helpful in work situations? What kinds of jobs haven’t worked out? Do your co-workers and boss know you are autistic? Have you experienced harassment or lost jobs due to discrimination or prejudice? Any stories or advice for employers you share will be treated confidentially. Names, locations, type of business, etc. will be changed or omitted if used in the presentation.

If you would like to share information for this project, you can comment here, email me or post at your own blog. Links to anything employment related you have written would also be much appreciated.

Real world friends

I mentioned my friend (a) to another friend (b). (b) seemed interested, but then gave me the eye roll when she realized that (a) was an “online” friend (as opposed to the “real” kind). This amused me slightly more than it annoyed and frustrated me. The thought of explaining my friendship with (a) to (b) crossed my mind, but was dismissed as defensive-sounding and likely-to-not-be-understood-anyway. In the minds of persons like (b), people who consider their online acquaintances “friends” are a little bit …off. Naïve at best, more likely pathetic, unable to maintain “real world” friendships.

I have another friend, (c), who falls right in the middle. She’s not in the suspect “imaginary” category of online friends. I did first speak to her through email, but we’ve since spent time together in the world accepted as real. We continue to conduct the bulk of our relationship through email, meeting up maybe every couple of months just for the heck of it. Type (b) friends accept my friendship with (c) as the real thing because I can mention, once in a while, a meeting for coffee or playing toy cars with (c)’s children.

(c) is not autistic, but she understands autism very, very well. She is someone I would consider a “cousin” and not at all put off by my pacing, repeating things or drawing squares as we talk. That stuff isn’t at all what my relationship with (c) is about, though. It’s all about what happens in the emails. That’s where we really talk. (b) understands that in theory, at least.

While the relationship with (c) makes some sense to (b) and the other B’s in my life, attempting to explain (a) would be futile. (a) is like me. We talk in a language that makes sense only within the context of this particular friendship. I’ve never revealed my innermost thoughts and darkest secrets directly to (a), but I’m sure enough that she knows them. Nothing surprises her. Because we “get” each other at this level, there isn’t a need to dredge through the details of what I’ve done, where I’ve been, the whole history thing people do in the process of “getting to know” each other.

When I speak from scripts, she expands them to include more. Whether this “more” means scripts of her own or something beyond that doesn’t matter. The inner workings of my mind and soul are revealed to me in new ways when we talk. I am more “me” with her than I am with (b) or even (c) and I come away from these meetings energized, not drained. This is friendship and it is real and it is autistic. Thank you, (a), for being a part of my life.

Not news, but anyway...

Matthew Israel stopped by earlier today, leaving a comment on a post I'd made months ago regarding the Judge Rotenberg Center, a post which was actually little more than a link to this video by Christschool. I've been so busy lately, I hadn't gotten around to reading the Mother Jones article he cited, "School of Shock". Silly me. I'm so glad I didn't miss it all together. Thanks for the tip, Matthew Israel. Anyone who also missed this article, please go read it now. You can read Israel's defense in the comments section there.

From the article:

"Despite his setback in California, Israel continued to expand on the East Coast—and to generate controversy. In 1985, Vincent Milletich, an autistic 22-year-old, suffered a seizure and died after he was put in restraints and forced to wear a white-noise helmet. Five years later, 19-year-old Linda Cornelison, who had the mental capacity of a toddler, refused to eat. On the bus to school, she clutched her stomach; someone had to carry her inside, and she spent the day on a couch in a classroom. Linda could not speak, and the staff treated her actions as misbehaviors. Between 3:52 p.m. and 8 p.m., staffers punished her with 13 spatula spankings, 29 finger pinches, 14 muscle squeezes, and 5 forced inhalings of ammonia. It turned out that Linda had a perforated stomach. She died on the operating table at 1:45 a.m.

The local district attorney's office examined the circumstances of Vincent's death but declined to file any charges. In Linda's case, the Massachusetts Department of Mental Retardation investigated and found that while Linda's treatment had "violated the most basic codes and standards of decency and humane treatment," there was insufficient evidence to prove that the use of aversives had caused her death."