What happens in San Diego

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

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

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

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

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.

V

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.

Updated 9/30/2009: Rest In Peace, Sugar Franklin. I am glad you had a few more happy months here with us. You will always be remembered. Fly Free.