Asperger Square 8

Autistic Awareness: Empathy

noreply@blogger.com (Bev) — Tue, 07 Jul 2009 19:05:00 +0000

What happens in San Diego

noreply@blogger.com (Bev) — Mon, 29 Jun 2009 20:52:00 +0000

The first thing you notice is the fruit. Huge bowls overflowing with grapes, cantaloupe, honeydew, pineapple, watermelon, blueberries, strawberries, lit by the morning sun. The contrast with the usual conference fare of bagels, pastries and small anemic fruit plates sets the tone for the entire event. There will be little “junk food” here, little talk of an epidemic and what could be causing it. Participants have come to learn more about how to understand and support autistic people. How to listen to different voices, how to think about differences in ways that nourish and enrich human lives.

In the auditorium, I am greeted warmly by Dr. Anne Donnellan and Martha Leary. They have brought a gift from Australia, a companion for Squawkers McCaw. They point out the autism-friendly green room just off the stage, inviting me to make use of this space when I need time away from the crowds. Long before my co-presenters, Steve and D’oC have arrived, I am among friends.

I settle into my chair to listen to the first presentations of the conference. I hear that nearly everything commonly said to be true about autism is based on the observations of non-autistic people. Motives are attributed to observed “behaviors,” interventions are designed based on these interpretations, each step moving further away from the reality of autistic experience. Built upon this “invented knowledge” are a number of lucrative fields for “experts.” Yes, this is a problem, one which can only be solved by learning to listen to those who have direct experience of autism.

Most of those in attendance are educators. They are attentive, eager to participate. Each session could easily have been twice as long; there are so many questions. Relevant questions. Thoughtful responses. Two rows ahead of me, a woman types every word she can catch into her laptop. The typing is loud, but I know she will carry important thoughts away with her to share with others. I have a little book with me for drawing squares, and this helps make the sounds of the keyboard go away. Later, before Nan Negri’s session, she asks for anyone with sensory sensitivities to speak with her. She wants to warn us that loud music and noise will be used in some of her activities. She wants to know what accommodations we might need for this. She will let us know when something is about to happen, in case anyone needs to leave.

At one of the breaks, a woman approaches me and says how happy she is to see Squawkers. My daughter carries a Spongebob everywhere…I know from a comment she made earlier that her daughter is twenty years old. I know from the way she looks at me that she does not see this as a problem. Throughout the days of the conference, I have several interesting discussions about parrots. One man tells me about the Amazons that live at Ocean Beach. He has seen macaws flying over this campus several times throughout his years in San Diego.

Early Friday morning, Steve, Do’C and I take the stage to discuss autism blogging and a variety of issues important to the three of us. The audience cheers as Steve reads the conclusion of The Best Story Ever. Do’C asks some questions of the group. Who here has a child on the autism spectrum? Would you be willing to stand up and say that your child is not broken? One after one, they do this, with increasing intensity and conviction. The room echoes with the voices of women and men expressing pride in their children. Like any other parents.

They gasp at the depictions of autistic children as soulless and tragic. These sounds are important to me. They mean that the images are shocking and inexplicable, not necessary and matter of course as some would have you believe. They laugh at the idea that I am “not really autistic,” or entitled to a voice, as I have sometimes been told by others. They are as puzzled as I am that ideas like understanding and acceptance of differences have proven so controversial. After the presentation, a young woman, one of the teachers in the group, comes to the stage. I have been hiding, she tells me. She has not told many people about her diagnosis, she has been told that a “label” could only make her life more difficult. Nodding toward Squawkers, she asks me, Do you ever let anyone…

Yes. I place him in her arms. I have an animal too, she says. Later, she will bring him in from the car. She will join the panel session, speaking openly from the stage about her experiences as an autistic woman. Many others speak to me—the teacher who took off (for good, she promises) a puzzle piece necklace during the presentation, the mother who wept because she has searched for ten years for someone to agree with her that her son is an acceptable human being and did not need to be fixed.

They ask me to continue. They want to know more. I am happy for this, but unable to say much. I go to the quiet place for a long, long time. There will be a question and answer period this afternoon. There will be more time, another break, another bowl filled with apples, bananas, cherries and plums. Again, I am refreshed and revived by the spirit of acceptance at the core of USD's Autism Institute. As always, I will leave here with so much more than I brought to the table.

Beyond Awareness

noreply@blogger.com (Bev) — Mon, 15 Jun 2009 15:58:00 +0000

For the third time, Autism Hub bloggers Steve D. (One Dad's Opinion), Do'C (Autism Street) and I have been invited to present at The University of San Diego's Autism Institute. The summer Institute will be held June 24-26 this year on USD's campus, and the title of our program is "Beyond Awareness." I very much appreciate USD's commitment to include the perspectives of autistic people and others who advocate for acceptance, inclusion and individualized supports. If you are in or near San Diego next week, please join us at the Institute!

Häagen Dazs Vanilla Swiss Almond Found "Not Helpful" in Treatment of Autism

noreply@blogger.com (Bev) — Wed, 10 Jun 2009 14:14:00 +0000

Following on the heels of the shocking news that the prescription antidepressant Celexa® does not cure autism, scientists have discovered that the highly touted Häagen Dazs Vanilla Swiss Almond ice cream also does little or nothing to quash the intense focus on narrow, restricted interests associated with the disability. Dr. Martin Geiger announced Tuesday that a group of autistic teens treated with HDVSA failed to become indistinguishable from their peers in what he described as a “totally random controlled experiment.”

The scientific community first showed interest when Flossie McVey, a young autistic woman living in Dubuque Iowa, lost interest in her collection of stainless steel rotisserie forks after consuming two pints of the rich and reportedly awesome dessert. Upon further investigation, McVey was determined to have simply fallen asleep. Undeterred by this apparent setback, researchers carried on with the two year study. Participants gained an average of twelve pounds, but continued to study ceiling tile designs and to watch reruns of Star Trek: The Next Generation at the same rates as those who ate only Dryer’s Double Vanilla Bean.

All hope is not lost, according to Dr. Geiger. “Häagen Dazs is working on a new Acai Berry flavor, and we have high hopes for this. The berry has gained enormous credibility through its repeated appearances on the Oprah Winfrey Show.”

A Conversation with Martha Leary

noreply@blogger.com (Bev) — Tue, 09 Jun 2009 14:31:00 +0000

Martha R Leary does training and consulting on creative ways to support people on the autism spectrum and those with other neurological differences, throughout Canada, the US, England, Ireland, and Australia. Martha is a Speech Language Pathologist and has worked in this field for over 30 years. She has authored and co-authored a number of publications on sensory and movement differences emphasizing how those differences might affect other people's assumptions and the ways in which they provide support. Martha and David Hill currently have a paper in press about the support relationship. When she is at home in Halifax, Nova Scotia, Canada, Martha is an urban farmer.

Bev: In your writing and presentations with Dr. Donnellan, the two of you talk about the social interpretations that are often imposed on descriptions of autistic ways of moving. In contrast, movement differences in people with Tourette’s or Parkinson’s are usually accepted as involuntary, and rarely analyzed as if there were a psychological origin.

Martha: Thanks for asking about this. In the early 1990’s a small group of people interested in autism began studying the literature on what are called movement disorders. We lived and worked all over the continent and beyond: Toronto, Ontario; Madison, Wisconsin; Gainesville, Florida; Pennsylvania; Connecticut; Indiana; Bath, Birmingham & Bristol, England; and more recently, San Diego, California. We got together whenever we could at national conferences like TASH and at ‘salons’ held by Anne Donnellan in Madison, Wisconsin. We wondered if differences in people’s ability to organize and regulate sensory information and movement could mask competencies and create the widely-held impression that people were behaving in an unusual manner ‘on purpose’ or because they lacked insight into how other people behave.

We looked outside of the autism literature because that literature often did not reflect research in other areas of human experience. We worked on trying to understand the personal experiences of people who had acquired common movement disorders such as post-encephalitic Parkinson’s disease, Tourette syndrome and classical catatonia. Although we understood that growing up with a sensory movement difference was likely to be quite different from acquiring a difference later in life, we wanted to listen to the voices of people with neurologically based sensory and movement disorders. We listened to people describe how they may intend one thing and do something quite different or how a person might be just as surprised by his own symptoms as an observer might be.

We examined the common assumptions about the nature of behavior in autism. Many of our assumptions about behavior were based on the medical and behavioral literature in autism. Behavioral literature had described most unusual behaviors as learned behaviors that could be shaped, extinguished or reduced through behavioral technology. Learning challenges were categorized as intellectual and cognitive deficits without consideration of the neurological symptoms behind such challenges. The medical literature on autism used the diagnostic and statistical manual of mental disorders (DSM) to describe autism for medical practitioners. The DSM did not name neurological symptoms (e.g. abnormal posture, abnormal muscle tone), but instead focused on the resulting behaviors (e.g. failure to cuddle). The DSM had used phrases such as ‘prefers to’ to describe symptoms with which people struggled and failed to mention the likelihood that many unusual behaviors had a neurological basis.

Our learning was supercharged by a growing number of autistic people (or people with autism) who were writing and speaking about their own experiences. Without the stories from autistic people, for example: Michael; Jenn; Mark; Steven; Shawn; Sue; Peter; Ashanti; Kathleen; Art; Peyton; Thomas; Donna; Jordon; Barbara; Eugene; Cathy; Danny; Shawna; Ken; George; Jonny; Emanuel; Tito; Temple; Andrew; Bill; Kyla; Dan; Melanie; and Luke, we would have been kept in a cycle of endless repetition of assumptions. What a wonderful time to take our journey; Lots to read and more and more people to listen to as we traveled. Perfect.

Bev: This really gets at the core of what I appreciate most about your work--the fact that you listen to autistic people. There are so many folks out there who seriously believe that autistic people are not qualified to explain much of anything about autism. Or who believe that anyone who can talk about such experiences somehow doesn't qualify as "really" autistic.

The whole question of doing (or saying) things "on purpose" is complicated. Sometimes I squawk! I think of this as semi-voluntary. The problem with defining it is that (sometimes, at least) my choices are limited: I can either say nothing, say something that has nothing to do with what I really mean, and which might make the situation worse, or I can squawk. At other times, I have different choices, and when the choice to say what I really mean presents itself, that is what I do. But the fact that I can do that at times is taken as evidence that the other times, the silent times, the squawking times, are representative of my "choice" not to communicate properly. I can argue about that, or I can accept that I am seen as a rather silly-acting person. Since I'd rather be seen as silly than incompetent or uncaring, I have accepted that view for a long time .. It has, to a large extent, become part of how I see myself, so much so that I don't usually know for sure if I'm joking or not. Or I both am and am not joking at the same time, and that can either be unnoticed by people or taken as passive-aggressive or somesuch. It's a little frustrating to be aware of all these layers and possibilities all of the time, and to know that I have so little power to change how I am perceived. I guess that's why I write.

Martha: I’m glad you brought up the subject of intention. There have been many fine academic and research attempts to define intention, intentional, voluntary, etc. over the past century and I will not wade into those waters today. I agree that this is an extremely complicated topic and one that fascinates me. When I speak to people about the possibility that a person’s challenges may be related to organizing and regulating actions, postures, speech, thoughts and emotions, the notion of ‘on purpose’ rears its lovely head. People describe an event that did not go well for someone and demand to know, “Was that a sensory movement difference or was that a behavior?” I like your idea of semi-voluntary squawking.

A friend of mine who experiences a significant and powerful movement difference once accompanied me several city blocks to a favorite restaurant. He ran down the street backwards about 10 feet ahead of me as I walked, briskly, in the same direction. While he ran, he told me of his strong feelings for sharks and how the shark was losing habitat and being slaughtered for being a predator. It was not easy for him to express these opinions as he was running backwards, glancing over his shoulder for pedestrian traffic and shouting so I could hear. When I later asked him why he ran backwards, creating a situation where he risked physical calamity and made an interesting conversation into a shouting match, he responded that he had done this out of choice. He ran backwards as a choice over sniffing the tailpipe of each car parked at the curb of the streets we traveled. This sniffing took copious amounts of time and he thought we might be late for our luncheon date with our friends. This sounds a lot like semi-voluntary squawking to me.

Bev: What have you been working on recently?:

The developing understanding of sensory and movement differences for people with autism naturally leads to consideration of the numerous ways in which people have adapted to these differences and increased their participation in daily life. Phil Schwarz recently referred to autistic adults developing a “parsimonious use of the bandwidth” with age and experience that incorporates a “coherent autistic aesthetic sensibility” that includes a love of sameness, preferred patterns and predictability. Others have referred to these as accommodations.

I think of accommodations as adjustments or adaptations of an interaction, a task, situation, or the environment that assist a person to temporarily get around difficulties organizing and regulating actions, postures, perceptions and sensations, speech, thoughts, emotions and memories. Oliver Sacks (Awakenings, 1990) wrote eloquently about accommodations developed by his patients with post-encephalitic Parkinsonism. In my work, I have focused on understanding accommodations that I see people using, explaining them to others as a way of supporting competencies that people have developed. I have also worked with people to discover new accommodations that may be useful. My persistent perseveration is rhythm. Those interested in going deeper may look at the recent work of Hanneke De Jaegher.

I would love to hear more about accommodations that you use to support speaking.

Bev: The most important thing for me has been understanding autism and how it has shaped who I am. Before I realized that I was autistic, I saw each of my differences as separate “problems” or ways I was defective. I couldn’t participate in conversations with more than one person. Sometimes I couldn’t speak at all, especially when someone was asking me questions. I had obsessions that ruled every minute of my days. I seemed to make people angry a lot without knowing why. The way I moved was just one more “thing” that was “wrong” with me. People would ask me, “Why do you walk like that?” I had no idea. I can’t walk across a crowded room without running into several people. Going to stores is a nightmare because of this, so many people moving in different directions at different speeds, stopping and starting, and I can’t calculate fast enough where I am supposed to go. I end up standing still in the aisle until there is enough space around me to move freely to my destination.

Anyway, figuring out that all of this is somehow connected helped immensely. I am more comfortable with my differences now, and I don’t worry as much about being understood or how I am perceived by others. That reduces the anxiety a lot, allowing me to go places I would not have gone before. Speaking at conferences, traveling across the country alone, these are not things I would have imagined being able to do a few years ago. Of course, I am still autistic, but knowing this has helped me redirect my obsessions in ways that are safer, my need for sameness can be honored in ways that don’t demand such a restricted life.

I’m interested in exploring the concepts of speech, and even thought, as types of movement. I don’t know much about the research on this, but intuitively, I feel a strong parallel between the way I move and the way I talk. Sometimes, my thoughts get “stuck,” and sometimes my words pace back and forth or lurch forward unexpectedly. It’s clear to me that the same sorts of things are going on at every level of my being. As for rhythm, I often use the repetition of words and syllables, and also tapping to keep myself on track. Drawing squares and other patterns is helpful, too. These are a few of the things that keep me focused and available to participate.

Bev: I’ve talked a lot here, and I want to be sure you can get the last word in. What else would you like readers to know about your work?

Martha: I want you to have the last word.

Bev: Squawk.

Note: I met Martha in January of 2008, when several Autism Hub bloggers were invited to present at USD's Autism Institute. Steve D, Do'C, and I will be presenting again at the Institute later this month. This will be our third appearance there, and I very much look forward to seeing everyone again.

Flocks

noreply@blogger.com (Bev) — Sun, 07 Jun 2009 16:03:00 +0000

I

I have never appreciated the dynamics of group friendships. I have been able to have satisfying one-on-one interactions sometimes, with some people, in some situations. But until very recently, I had not been able to participate in groups. Sure, I could be there physically, but that is very different from participating. For years, I never said much, and most people assumed that this meant I was shy or had nothing to say. My comments, when I did make them, often came across as odd or “inappropriate.” Of course I understand the reason for this now. To communicate well with one person requires a large expenditure of energy on my part, and a great deal of patience from the other party. Even in these one-on-one conversations, I am often left behind. For each additional person added, the energy drain and frustration increase as I try to keep up.

The time it takes me to process another person’s words and then formulate a response in words of my own is probably about four times as long as for the average person. This means that by the time I am ready to make a comment, it often seems no longer relevant. Far easier to remain quiet than to try to make the comment and also explain that it applies to something said a minute or two back. Then comes the dreaded point where someone realizes I have not said anything in awhile. What do you think about this, Bev? This person is trying very hard to include me. I appreciate that. I do. But I will disappoint her just about every time with a blank stare or a quickly cobbled string of words that has little to do with what she thought was the topic. Alternately, I will interrupt and talk over people, trying too hard to get a thought out. This is considered rude, of course, and I don’t mean to do it. It’s another expression of the same processing issues. I have experienced many conversations in which interrupting was the only way I had a chance to speak. For most of my life, being in groups of people has made me feel very alone.

II

Squawkers has two brothers now. They are cockatiels, Dylan and Brubeck. Deciding to adopt these birds took me a long time. Did I have the time to devote to a parrot (or two) who would require daily interaction with me? Could I ever know enough about birds to keep them safe and happy? Could I afford the food and toys and other enrichments and veterinary care they would need to be healthy? But these were not the real questions, and I knew it. While I talked about their vulnerability, it was my own I feared. Loving them would open a place in my heart that had never been touched. I wasn’t sure I could stand it.

III

Years ago there was a flock of people I wanted to join. God knows why, but at the time, it seemed important to prove I could do this. The flock had a leader who liked to claim she was not the leader. She continued to argue that what everyone else saw was not true, and nothing ever changed, and she continued to orchestrate all the group’s activities. To earn one-on-one time with the flock leader, a situation in which I could communicate well, I was required to attend gatherings of the larger flock, a situation where my participation was impossible.

During these gatherings, I had many opportunities to reflect on my issues with people in groups. My struggles with finding a way to be included were not all about speech processing time. One incident that stands out in my memory involved the group watching TV in a restaurant. The TV was showing one of those home video shows where people make mistakes while other people film them so that many more people can be entertained with the mistake-makers’ incompetence. In this episode, people were slipping on ice. It’s a popular theme with these shows, people falling down. Everyone at the table laughed, except for me. This went on for several minutes. The more painful the fall appeared, the louder the laughter at the table. A deep sense of unreality set in. I didn’t see anything funny about it, and I didn’t understand why I was supposed to pretend, or how I had broken the social contract. I didn’t know at the time that I was supposed to lack empathy.

IV

Does he talk? This is the first question people usually ask when someone adopts a parrot. Some cockatiels can learn words and phrases, others never do. There are a lot of variables, including the amount of time you work with them, absence or presence of other birds, variations in natural abilities, motivation to bond with humans. Brubeck knows how to say “Hello,” and seems to be working on a few other words. Dylan speaks in quiet little chirps most of the time. Both of them communicate very well, letting me know when it’s time for us to gather as a flock, when they are happy or angry or nervous, and when they want me to change the TV station (they don’t like Law and Order or CSI or anything else that might include police sirens). Learning their language has not been too difficult. Sure there are things I don’t understand, but I understand enough.

Does he talk? This is the wrong question. The birds enrich my life by teaching me their ways, not by learning mine. Of course they don’t mind if I repeat myself, which is nice. Cockatiels are creatures of habit, too, preferring the same foods and routines over and over. Preferring sameness and repetition. Resistant to change. Somewhat like me.

Seven times seven is forty-nine. This has been a favorite bit of echolalia for quite awhile. I’m not sure why, other than that it is a square number. Seven times seven is forty-nine has a strong and confident rhythm, and states a fact that will never change. Cannot be argued with. It is. It is. At the age of forty nine, I have small groups of friends I am comfortable with. It has taken me a long time to learn to do this, but that is okay. The course of development in autism can be unpredictable. I worry when I hear people say He will never do this, or She will always need this same type of support. There are many things I could not do at 6 or 16 or 36 that I can do now. Ten years ago, I would have sworn that my degree of comfort with groups now would never happen. That my current way of being was impossible.

I learned things I needed to know from the laughing flock. While my ways remained foreign to them, I learned about theirs. Part of what I know now is to choose friends more carefully. The friends I have now take time to listen to me. They notice the signals that I am ready to speak. They leave a space for me without making a big deal of it. There are no leaders in these groups, and that helps. The things we do together are somewhat structured, including predetermined activities and/or a clear time frame. I laugh a lot with my friends. Usually, nobody cares if I laugh too loud or too long or at the wrong time, or fail to laugh at a joke I don’t understand. No one seems to think it is funny when someone gets hurt. I can wander off to be alone for a few minutes. When I come back into the room, I know that any incidental laughter is not at my expense.

IV

Parrots in the wild are trapped by unscrupulous traders who first take one parrot as a decoy to attract others. Parrots are fiercely loyal to their flock mates, and will nearly always come to the rescue of the decoy, who is nailed to a branch or entangled in a net and crying for help. They are easy marks for the trappers. Many wild parrots are injured and many die before ever being exported into the pet trade. Those who live are sold to breeders who keep them in tiny, filthy cages, or pet stores who pass them on to buyers who think they might look nice in the corner by the sofa. When the bird turns out to be noisy, demanding and messy, she is often abandoned, passed from home to home, finally euthanized or released into a world she is unable to navigate safely. Meanwhile some species are on the verge of extinction. The story of the parrot trade is terribly sad.

VI

One of my human flock is terribly sad. Her beloved cockatiel, a treasured companion for nearly eleven years now, is dying. I don’t know how to help her. I have never been good at comforting. People like me have been said to lack empathy because we don’t say the right words or offer the right hugs at the right times. I have learned to do some of that stuff too, but I don’t do it naturally or consistently. People like me have been said to break the hearts of our family members because we are “cold.” Destructive groups like FAAAS claim that getting too close to an autistic person can cause mental and physical illnesses. Easier to blame, I guess, than to learn how to listen to the language of autistic empathy. The pain I feel for the impending loss of this little bird, Sugar Franklin, although I have never met her, is deep. I have known her mom less than a year.

Yesterday, our flock gathered around her. We talked about Sugar, but not a lot. We ate lunch and talked about our lives, even laughed a bit. Squawkers McCaw was there. “I love you,” he said. We were on our way back to the car, his face was turned away from the group. Though nobody heard, it was part of the conversation.

Cross Purposes: A Composite Conversation

noreply@blogger.com (Bev) — Tue, 26 May 2009 13:57:00 +0000

Bev: The widespread abuse of autistic people must be stopped.

Someone Else: Cure the autism. That will end all the problems.

Bev: There is no “cure” for autism. Autistic people need and deserve to be fully included in society.

S.E.: You are not autistic.

Bev: I am autistic, but even if I were not, there are still autistic people who need support and accommodations that they are not getting, and who deserve lives free of abuse and exclusion.

S.E.: Do you think that maybe vaccines are responsible for the increase in autism?

Bev: No. I think that the Judge Rotenberg Center needs to be closed immediately.

S.E.: Why do you reject all treatments for autism?

Bev: I reject the idea that “autism” itself is something that can (or should) be eliminated. I reject treatments that are unethical, inhumane, or lacking in evidence, whatever they claim to treat. I support OT, speech therapy, physical therapy, etc. where appropriate. I support treatment of depression, anxiety, sleep disorders and other medical conditions whether these occur in autistic or non-autistic people. I support special diets, supervised by real physicians, for people who have diagnosed food allergies.

S.E.: So you are against a cure!

Bev: There is no “cure” for autism. I am against the marketing of quackery. Unproven treatments like HBOT, chelation, Lupron, etc. do not cure autism and can harm autistic people (and also their families who go into debt to pay for these scams). What I am for is helping autistic people learn skills they need in ways that respect their unique learning styles.

S.E.: So, according to you, all research into autism should be stopped!

Bev: I would like to see some of the money that is spent researching possible causes of autism be put into developing alternate means of communication for those who need it. I’d like to see AAC made available to all who might benefit. I'd like to see some of the money raised in the name of "Autism Awareness" go into training employers, teachers, first responders, police, doctors and others who will find themselves in positions of power, however momentarily, over autistic people. I’d like to see major autism groups actually listening to the needs of autistic people rather than trying to prevent more autistic people being born.

But back to what I was saying…autistic people are routinely abused in institutions. Judge Rotenberg Center is not the only one, but closing it down would be a good place to start.

S.E.: People bang their heads because they are autistic. They need to be institutionalized.

Bev.: I have a history of hitting myself in the head. I can tell you that every single time I have done this, it was because I lacked a better way of saying what I needed to say.

S.E.: This conversation is not about people like you.

Bev: I know that. I am aware. I am more and more aware of this every day.

Cassandra's Novelty Shop

noreply@blogger.com (Bev) — Tue, 21 Apr 2009 18:17:00 +0000

FAAAS is a group that disseminates false and harmful information about autism and autistic people. Please sign this petition requesting that Dr. Tony Attwood and Dr. Isabelle Hénault disassociate themselves from this disgraceful group. Learn more about FAAAS and the Cassandra Affective Deprivation Disorder invented by Maxine Aston here, here and here.

More Autistic Awareness

noreply@blogger.com (Bev) — Fri, 17 Apr 2009 14:47:00 +0000

Autistic Awareness Video

noreply@blogger.com (Bev) — Thu, 09 Apr 2009 16:11:00 +0000

Autistic Awareness, not "Autism Awareness."

Autism Awareness!!!

noreply@blogger.com (Bev) — Fri, 03 Apr 2009 04:27:00 +0000

This re-design was requested by Angela at Memoirs of a Chaotic Mommy. It is based on an Autism Speaks/Toys R Us advertisement that is making the rounds. Thank you for the suggestion, Angela.

True Stories of Autism Awareness: Part One

noreply@blogger.com (Bev) — Wed, 01 Apr 2009 15:32:00 +0000

An agency asked me to write about issues for adults on the spectrum. This was to be included in a publication for Autism Awareness Month. I was wary; I don’t tend to think “awareness” is a reasonable goal. I told the person who asked me that I didn't want my name associated with what usually goes by the name Autism Awareness. But I was told I could write this from my own perspective. I insisted I needed to have final control over any edits, and this was accepted. I wrote the piece. It took a day and a half of my life. Then I was told they wouldn’t be using it. Although this was early in March, although the meeting in which this decision was made occurred on the very day I submitted the work, there simply wasn’t going to be time to include it. What did they choose to publish instead? Something on recognizing the first signs of autism. Because no one has heard that story before, right?

Happy Autism Awareness Month! This has been a true story, not an April Fool’s Day prank.

Autism Awareness Month Posters

noreply@blogger.com (Bev) — Mon, 30 Mar 2009 16:01:00 +0000

Anyone who wishes to use these is welcome to do so. I plan to print out a few of each for placing near offensive or simply misguided "awareness" displays.

Judging a Book by its Cover

noreply@blogger.com (Bev) — Sat, 07 Mar 2009 13:31:00 +0000

Is it ever appropriate to judge a book by its cover? Perhaps not, so this is my disclaimer: The following is a review of a book cover, title, and promotional materials, not the book itself. I don't know what Michael Alan has written about why he wishes his children had a potentially fatal disease. I don't intend to shell out twenty dollars to find out, either. I would be willing to bet I could list every point the book makes without reading it, but that is not the same as knowing.

The book's title states clearly, I Wish My Kids Had Cancer. The subtitle references "survival" and an "autism epidemic." The book has a website, where people have left glowing comments about how "this book has changed my life!" There are currently 8 customer reviews on Amazon.com. All rate the book highly, and words like "devastating," "affliction," and "vaccinations" are much in evidence. There is even a facebook group supporting I Wish My Kids Had Cancer.

Of course Michael Alan is not the first to make such an outrageously offensive statement. Last year, Jenny McCarthy said that she would like her son to have measles. Others have had no problem stating that autism is worse than cancer, most famously David Vardy of the Autism Society of Canada, who added, in case anyone missed the point, that autistic people have "a normal lifespan."

Alan's book cover also states that proceeds from sales of the book will be donated to "charities to help families with autism." In case anyone is wondering which charities these might be, the facebook group's description provides a clue:

***Includes expert testimony from leading DAN! Dr. Mary Megson***

So, Mr. Alan wishes his kids had cancer. How is this my problem? Well, because once again, someone is working to stir up fear of autism, and the consequences for autistic people will include continued misunderstanding, exclusion, and abuse. How terrible must a condition be that one's own parent would prefer to see his child faced with cancer? What is the value of such a life? With every such morbid comparison, autism and cancer, autism and tsunami, autism and death, these associations become more tightly woven in the collective consciousness. With each one adding his two cents worth of stigma, the jar fills up. The perceived value of autistic people declines. The thought that autistic people need not exist becomes more ingrained. Until the thought is no longer recognizable as a belief. It's "common sense," background noise.

Lest we forget that there are many families in which a child does have cancer, I cannot imagine that any of them would find Michael Alan's intentionally provocative title amusing in the least. Like anyone else, an autistic person can be affected by cancer. While clearly I abhor this book's title, I also hope in all sincerity, that Michael Alan's wish does not come true.

I would like to thank Andrea Shettle for alerting me to this story.

Bitter Chocolate

noreply@blogger.com (Bev) — Wed, 04 Mar 2009 05:03:00 +0000

If you are disturbed by Lindt's partnership with Autism Speaks, please contact their customer service department at lindt@qualitycustomercare.com. You can read about the boycott here and here and here.

Think Differently

noreply@blogger.com (Bev) — Thu, 12 Feb 2009 20:01:00 +0000

Video by National Autistic Society

Dan: The Real Story

noreply@blogger.com (Bev) — Sat, 24 Jan 2009 16:18:00 +0000

Read more about Dan at Action for Autism, The New Republic, and The Voyage.

Judged Unworthy

noreply@blogger.com (Bev) — Sat, 24 Jan 2009 00:58:00 +0000

Have you heard the story of Barry Baker? On November 29, Baker, a disabled man in Sussex, England, called for an ambulance. He recognized that he was having a heart attack. He wanted to live. The dispatcher stayed on the line with him, waiting for help to arrive. Before it did, he collapsed, but the dispatcher kept the line open. When the ambulance arrived, the two EMT workers opened the door to Mr. Baker’s house. They saw a messy house. A very messy house. They saw a very large man, a man with a disability, a very large man with a disability, collapsed on the floor of a very messy house. They talked about him. They talked about his house. Expressed disgust at the way he lived. They talked about whether or not he was worth saving, agreeing to report that he was dead when they got there. The dispatcher heard it all, and turned the tape over to authorities. The EMT workers were arrested, and are free on bail until late in February.

It happened on November 29, it’s an old story. It was quite a bit later when I heard it. Late in December, the company charged with cleaning the house chose to release photos of Baker’s home, allowing all the world to see and comment upon and judge the state of Baker’s living room. People like to see the evidence, decide for themselves. Worthy or unworthy? Barry Baker was left to die in this living room. It is too late for him.

Just over a week ago, Dave Hingsburger posted a blog in memory of Baker at Chewing the Fat. He promised to tell people the story, to keep it alive. Now, I am telling it here. Baker’s story, on its own, is important for many reasons. It demonstrates the occasional failure of agencies sworn to help, of people paid to help, to remember that they are not endowed with the authority to decide who lives and who dies. People who are disabled, people who are “difficult,” are equally worthy of life and dignity.

This is a truth that has once again been called into question.

Minna Mettinen- Kekalainen, a 42 year old autistic woman with ALS has been denied services she needs to continue living. Apparently, the nursing agency that served her through the North East Community Care Access Centre in Sudbury, Ontario has reported harassment by Ms. Mettinen-Kekalainen since she threatened to report them for not following her doctor’s orders. The agency has said that they would not deny services to anyone, as long as their workers were “safe.” Meanwhile, the many forms of assistance she needs, listed by her as “basic hygiene, communication, mobility, and administration of medications, food and water” have been denied for forty days. It is hard to imagine that she could be much of a threat to anyone. No, she is being punished for speaking up for her rights. Judged as unworthy of care.

Read more about her story here and here and here and here.

In his post about Barry Baker, Hingsburger wrote:

I hope you will join me and bring Barry's story to others, begin a conversation of the dangers of disphobia and the need for us to be alert to the fact thatthose who are supposed to save us, may indeed kill us, that those who are supposed to care for us, may indeed hate us, that those who we are supposed to trust - can't be.

Here it is. It is happening again, more slowly, no less inhumane.

Please help spread Minna's story. If you have a blog, post a line or two about Minna. Contact one or more of the people listed here. Unworthy? She is a human being, and that should be enough.

Sudbury MPP Rick BartolucciConstituency Office email: rbartolucci.mpp.co@liberal.ola.orgMinistry of Community Safety & Correctional Services email: rick.bartolucci@ontario.ca
Minister of Health & Long-Term Care David Caplan: ccu.moh@ontario.ca

North East Community Care Access Centre (the centre that is refusing care to Minna)Head Office/Sudbury Branch1760 Regent StreetSudbury ON P3E 3Z8(705) 522-3461 or 1 (800) 461-2919 (Sudbury)

Maison Vale Inco Hospice (the place Minna hopes to gain admittance to)(705) 674-92521028 South Bay Rd. Sudbury, ON P3E 6J7Website: http://www.maisonsudburyhospice.org/Resident Care Coordinator Elaine Klym: elaine@maisonsudburyhospice.orgExecutive Director is Léo Therrien

David Butler-Jones, ; Chief Public Health Officer; (613) 954-8524

Square Talk: Inflexible Thinking

noreply@blogger.com (Bev) — Wed, 21 Jan 2009 02:35:00 +0000

This Square Talk is dedicated to Evelyn Towry, an 8 year old Idaho student who was handcuffed and taken to the police station after an altercation over a cow sweatshirt.

Long may you moo.

Pink Panther times two

noreply@blogger.com (Bev) — Sat, 17 Jan 2009 14:49:00 +0000

The Pink Panther has always been one of my favorite characters. As a child, I found the cartoon very easy to follow, as there was no requirement to process speech in order to understand it. Here, the Pink Panther offers his powerful vitamins to the public, with some unintended consequences.

I thought it might be fun to list some of the ways Pink Panther communicates in this cartoon, although he never uses spoken words. To get the list started, he writes, points, and rings a bell. How many other communication strategies can you find?

This next clip is from the 2006 movie, The Pink Panther, starring Steve Martin as Inspector Jacques Clouseau. Much frustration ensues when Clouseau is unable to pronounce a word as directed.

Clearly, the dialect coach messed up big time. A bag of M&M's in view might have been more motivating. Or could it be that Clouseau's way of speaking is already sufficient to meet his needs?

Everyday Terror

noreply@blogger.com (Bev) — Fri, 16 Jan 2009 04:01:00 +0000

Why can't we face the truth? Having an autistic child wrecks your life. The title of Carol Sarler's article in today's Mail Online pretty much tells the story. It has all the drama you would expect from the title--a child who "screams like a banshee," moments of "everyday terror," parents who will never work full time again, an entire family ruined by the presence of an autistic child. Even the grandparents are starting to have disagreements over finances!

Sarler concludes her sad tale with her unsolicited opinion (it would be "impertinent," you see, to bring this up to the mother, yet not so much to broadcast it to all of cyberspace) that life would have been better for this family, for all concerned, had "Tom" never been born.

Yes, seriously.

I scrolled through the story as quickly as possible, reaching for the comments section where surely these hateful statements would be soundly refuted. There were some comments rejecting Sarler's conclusion, but quite a few agreed with her completely. I didn't get far before I found these:

I have no doubt that Tom is, through no fault of this own, a tremendous burden.

Oooh, you're going to have all the dogooders at your throat, but yes, his life should have been one unlived, sad but true.

Amen, no one is brave enough to say it but we all think it. What misery for all involved.

This is a very brave article. And very true. My twelve year old nephew is severely autistic. Needless to say, my sister and brother-in-law have a miserable marriage

Finally, someone with the spine to state the obvious. Thank you Carol Sarler.

Madam, you are very right. Something else, probably never thought of - the poor neighbours suffer as well.. their quality of life is also changed for the worse if they have the misfortune to live above, below or next to a family with such a child.

A very moving and thought-provoking article. I think many more people than are willing to let on would abort an autistic child if they knew.

Yes, there are more, feel free to look it up if you feel like taking a few punches to the gut.

Yes, I know that the Daily Mail is not to be taken seriously as a newspaper. But the number of people writing in agreement with Sarler is hard to take.

I have surrounded myself with people who agree that disability is not a tragedy, parents who treasure their autistic children. People who don't assign ultimate value based on what someone can or cannot do. Some call this "burying one's head in the sand," I suppose. I see it as a necessity. The will to go on can be fragile.

Do these commenters not even stop to think how this reporting of wrecked lives might affect their autistic family members? Or do they seriously believe that autistics are not aware of their openly expressed opinions?

Yet of the three generations, it is Tom who suffers most. And he's getting worse. As Helen [Tom's grandmother] said, only last week: 'We used to have a little autistic boy who was often happy. Now we have one who never is.'

Does anyone wonder?

Protest Pity

noreply@blogger.com (Bev) — Thu, 15 Jan 2009 13:31:00 +0000

In case you haven't heard, Jerry Lewis is slated to receive the Jean Hersholt Humanitarian Award from the Academy of Motion Picture Arts and Sciences in February. There is still time to sign the petition here. Read more of the story here and here.

Where in the world is Steve D.?

noreply@blogger.com (Bev) — Thu, 08 Jan 2009 01:23:00 +0000

Steve D. of One Dad's Opinion sends greetings from a recent, and well deserved, vacation. Check out his latest post here.

ASAN Recommedations to Obama Transition Team

noreply@blogger.com (Bev) — Tue, 06 Jan 2009 22:14:00 +0000

This announcement is from Ari Ne'eman, president of the Autistic Self-Advocacy Network:

Hello,

This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.

Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.

Nothing About Us, Without Us!
Regards, Ari Ne'emanPresidentThe Autistic Self Advocacy Network1660 L Street, NW, Suite 700Washington, DC 20036http://www.autisticadvocacy.org732.763.5530

Details of ASAN's recommendations can be found here.

Here is a brief excerpt:

Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for an effective education across the lifespan.

ASAN goes on to suggest that no less than a third of federal funding for autism research be allocated to services-based research.

The inclusion of ASAN in this discussion represents a big step in the right direction. A common myth about neurodiversity is that autistic self-advocates who support ideas like acceptance would prefer to see an end to autism research. That isn't the case. It's about resources. While huge sums of money are poured into finding the cause of autism, there are many autistic people who might benefit from services that money could buy. There are autistic adults who need help with employment, education, transportation, activities of daily living. Autistic children need Free and Appropriate Public Education. Adults and children on the spectrum need access to Augmentative and Alternative Communication devices. All of us need the opportunity to be fully included in the communities we live in. All of us need doctors and police officers who are properly educated about autism.

None of these needs are addressed by "Walk for Autism" events or public service announcements decrying the "horrors" of autism. But they are addressed realistically through the inclusion of autistic adults in formulating policy.

This is truly a hopeful start to the New Year.

Cages

noreply@blogger.com (Bev) — Sat, 03 Jan 2009 02:25:00 +0000

Cages

This week, I visited two local pet shops. At the first one, I talked with two Blue and Gold Macaws. They were molting, and not in the best of moods. Their cages were marked: These birds will bite. The owner explained that they wouldn’t have much to say. That’s okay, I told her. They don’t have to talk in order to be loved. These were rescue birds, taken in by the shop owner after being mistreated or rejected by previous people. Yes, she said. They know that now.

At the second store, parrots were free to roam around large habitats, interacting with visitors. One tried to work the zipper on my jacket; another worked at removing an earring. There was a big Macaw in the back. He kept to himself for awhile, declining invitations to chat or play. He argued with a cockatoo about who would get to use the swing. After winning, he happily vocalized, Hello, Hello, Hi There, Hello. Swinging away. Enjoying the ride.

Joy

From The Joy of Autism blog: “Finding joy doesn’t come without struggle.” Estee gets a lot of flak from “autism advocates” for the way she supports autistic people. Sometimes I wonder if the critics read much beyond the blog’s title. In addition to joy, Estee writes about pain, challenges, anger, disappointment and hope, inspiration and grief. Her core message is one of respect for all people. But even if she did only write about things that made her happy, or if I only wrote about parrots and squares, so what? Celebrating life is not wrong. When situations are difficult, it becomes ever more necessary to find the parts worthy of celebration. It shouldn’t need to be said that finding joy in autism doesn’t mean that is all one finds. Besides, the internet could hold a few hundred blogs about joy and autism without making a dent in the negative things that get said.

Cages

My father used to say that there are two kinds of animals: the ones in cages and the ones not in cages. He repeated this “joke” a lot. I rolled my eyes every time. I thought he was being facile. I missed the point, maybe. He was teaching me about the concept of false dichotomy, and how just about anything can be set as the bar separating one “type” from another. Today, I am able to see a deeper truth embedded within the silliness. In a way, Dad was right. The cage itself makes the animal less what it is, puts the individual on display to represent its entire species, keeps the people on the other side safe, looking in, imagining that what they see is the truth about that specimen, that species. Two realities: what is and what is seen from the outside.

“Reality”

According to some “autism advocates,” there are two kinds of autistics. The distinction varies, sometimes stated as autism vs. Asperger syndrome, speaking vs. non-speaking, or even, incredibly, miserable vs. joyful. Not only are there two types of autistics, some of these advocates claim, the voices of one “type” necessarily deny or trivialize the needs of the other. The idea that one “reality” trumps another, the idea that “reality” is static, the idea that one organization or entity owns the definition of “autism,” the idea that seeing, even at the surface, is believing, these form the bars to a cage that keeps those on the outside wondering. Which is the “real” autistic? Of course the question is silly, born of the false belief that the autistic person one sees in the nearest classroom or family (or mirror?) must be the archetypal Autistic from which others are once, twice or infinitely removed. The fact that my reality is different from someone else’s doesn’t make either of them less valid. There are as many autism realities as autistic people. This really shouldn’t need to be said.

Cages

I do a lot of talking about autism. These presentations cover a variety of topics from communication strategies to employment to self-advocacy. Somehow, I always end up having to talk about murder. I don’t like talking about murder. It isn’t fun. It doesn’t make people happy to hear about Katie McCarron, Jacob Grabe, and Tiffany Pinckney. It doesn’t please people to hear about the shock interventions used routinely at the Judge Rotenburg Center. Students locked in isolation rooms. Caged. Children evicted from fast food restaurants and churches and kindergarten classrooms, none of this is enjoyable. I don’t make a lot of friends doing this, but it has to be done. Whatever the topic, these things work their way to the surface, demanding attention, because they are what matter most.

And then I come home and read once again that neurodiversity is some sort of “feel good ideology,” denying the hardships faced by autistic people and their families. I read somewhere else, once again, that autistic adults do not exist, that we are a different animal entirely from the children who are “really” autistic. I want to just shake my head and go on, but I can’t. I can’t get over it. I tend to obsess about things, this is my nature. This is my cage, and also my swing. From the other side, Hello! Hello!