Tuesday, June 9, 2009

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.


  1. "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."

    That might explain why Tourette Syndrome and OCD are so highly correlated - maybe OCD is 'mental tics'.

  2. In following on from Ettina's comment,

    I have the non-hyperactive form of attention deficit disorder. But I can relate to people who have the hyperactive form because sometimes it feels like my brain is "hyperactive" in the way it will not easily "sit still" in one place long enough to sustain a thought or activity unless I am so fascinated with something that I get flipped over into hyperfocus mode. I've heard other people with attention deficit disorder say similar things.

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  4. I am so glad that other people are talking about this, I
    have talked about these issues for many years because I refused and still stand against the things that otherwise marginalize me or others with these disabilities.
    I was aware of the very real differences in me even as a child. When I was born concern was expressed about the adequacy of my reflexes. It took a long time to start to get to the more serious issues of neurological dysfunction relative to my behaviors. Back when I was a child
    the medical establishment loved Freudian labels,
    where it is now becoming clearer that neurological
    function would be a more appropriate and caring way to view our behavior, "or lack of it".
    with that said perhaps I can shed the negative stereotypes associated with my behaviors, in exchange for better solutions for my future and my education. The tricky part is getting the right people to understand this and how it relates to me and how I learn and communicate. The spooky part is the investment made by others in making me believe my behaviors were the problem in the the first place, rather than logical reactions to my
    environment and situation.

  5. Re, mark's comment

    Dumb analogy maybe, but for some reason this makes me think of this kid I worked with once, years ago, who loved the color orange. When it was time to draw, he mostly just wanted the orange marker. If he saw the orange anywhere (or anything vaguely orange) he'd get excited and say, "orange, orange."

    I just saw this as part of his personality until I learned that he had a form of color blindness that left orange as the clearest color he could see. I'm not sure exactly what his experience was with other colors (whether he saw them as black and white or if they merely seemed more drab or less differentiated in comparison to orange). But the point was, there was actually a good reason why he loved orange so much -- it was the primary color he could really see.

    From the "outside looking in" a pattern of behavior can so easily look like "just a part of a person's personality" even when it may actually be a response to significant neurological or other differences in their experience.

  6. Fascinating stuff. Please thank Martha again for us. And she's right -- the issue of "on purpose" is a very very complex one, and can apply to anything from facial expressions to breathing.

    Andrea S: I loved your analogy! It was pertinent and reminded me so very much of orange. I hope you don't mind that I LOLed at you choosing "Dumb" to describe it. :P

    Word verification: termat.

  7. RE Andrea S. comment

    I see that it is a very good analogy, this illusion that
    these traits are seen as "thats Just Mark" simply are
    dangerous assumptions, while it is true that I must except these differences as intrinsic to me,
    these differences do make it difficult for most people to engage me as I deserve to be engaged. I hope with more understanding that I can find ways of more consistent and skillful communication.

  8. Many thanks to Martha for her contribution here. I enjoyed the conversation very much, and am looking forward to hearing more during the USD conference later this month.

  9. I very much appreciate both Bev and Martha's comments and insights here. I am sad that a scheduling conflict prevents me from joining you at USD this year. I'll be there in spirit:-) I will share this interview with co-developers of our state-wide autism training here, in hopes to use parts of it (with your permission, of course) with our Wisconsin teachers of autistic students. I think this is vital information and perspective for teachers to understand if autistic students are to gain any benefit from the educational system.

  10. Andrea,

    Fascinating comment! When Alex was little he preferred orange & purple crayons/markers etc. In fact, I once set the video camera up to prove that point (sitting him in his high chair with paper and a package of markers) and the results -- he did indeed go for the orange and purple but he also turned the tables on me by blowing me away when he casually drew his first face. He was about 3 at the time. (I thought that clip was up on our YouTube channel but it isn't). Alex was later diagnosed with a colour deficiency (his grandfather was red-green deficient). I wonder if this explains his colour preference....


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