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. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
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 autisticways of moving. In contrast, movement differences in people with Tourette’s orParkinson’s are usually accepted as involuntary, and rarely analyzed as if therewere a psychological origin.
Martha: Thanks for asking about this. In the early 1990’s a small group of people in
terested in autism began studying the literature on what are called movementdisorders. We lived and worked all over the continent and beyond: <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /> 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 TASHand at ‘salons’ held by Anne Donnellan in Madison, Wisconsin. We wondered ifdifferences in people’s ability to organize and regulate sensory information andmovement could mask competencies and create the widely-held impression thatpeople were behaving in an unusual manner ‘on purpose’ or because they lackedinsight 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 tounderstand the personal experiences of people who had acquired common movementdisorders such as post-encephalitic Parkinson’s disease, Tourette syndrome andclassical catatonia. Although we understood that growing up with a sensorymovement difference was likely to be quite different from acquiring a differencelater in life, we wanted to listen to the voices of people with neurologicallybased sensory and movement disorders. We listened to people describe how theymay intend one thing and do something quite different or how a person might bejust 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 behavioralliterature in autism. Behavioral literature had described most unusualbehaviors as learned behaviors that could be shaped, extinguished or reducedthrough behavioral technology. Learning challenges were categorized asintellectual and cognitive deficits without consideration of the neurologicalsymptoms behind such challenges. The medical literature on autism used thediagnostic and statistical manual of mental disorders (DSM) to describe autismfor medical practitioners. The DSM did not name neurological symptoms (e.g.abnormal posture, abnormal muscle tone), but instead focused on the resultingbehaviors (e.g. failure to cuddle). The DSM had used phrases such as ‘prefersto’ to describe symptoms with which people struggled and failed to mention thelikelihood 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. Withoutthe 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 acycle of endless repetition of assumptions. What a wonderful time to take ourjourney; 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 seriouslybelieve that autistic people are not qualified to explain much of anything aboutautism. Or who believe that anyone who can talk about such experiences somehowdoesn'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 definingit is that (sometimes, at least) my choices are limited: I can either saynothing, say something that has nothing to do with what I really mean, andwhich 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 presentsitself, that is what I do. But the fact that I can do that at times is taken asevidence that the other times, the silent times, the squawking times, arerepresentative of my "choice" not to communicate properly. I can argue aboutthat, or I can accept that I am seen as a rather silly-acting person. Since I'drather be seen as silly than incompetent or uncaring, I have accepted that viewfor 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 amand am not joking at the same time, and that can either be unnoticed by peopleor taken as passive-aggressive or somesuch. It's a little frustrating to beaware of all these layers and possibilities all of the time, and to know that Ihave 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 thatthis is an extremely complicated topic and one that fascinates me. When I speakto people about the possibility that a person’s challenges may be related toorganizing and regulating actions, postures, speech, thoughts and emotions, thenotion of ‘on purpose’ rears its lovely head. People describe an event that didnot go well for someone and demand to know, “Was that a sensory movementdifference or was that a behavior?” I like your idea of semi-voluntarysquawking.
A friend of mine who experiences a significant and powerful movement difference once
accompanied me several city blocks to a favorite restaurant. He ran downthe street backwards about 10 feet ahead of me as I walked, briskly, in the samedirection. While he ran, he told me of his strong feelings for sharks and howthe shark was losing habitat and being slaughtered for being a predator. It wasnot easy for him to express these opinions as he was running backwards, glancingover his shoulder for pedestrian traffic and shouting so I could hear. When Ilater asked him why he ran backwards, creating a situation where he riskedphysical calamity and made an interesting conversation into a shouting match, heresponded that he had done this out of choice. He ran backwards as a choiceover sniffing the tailpipe of each car parked at the curb of the streets wetraveled. This sniffing took copious amounts of time and he thought we might belate for our luncheon date with our friends. This sounds a lot likesemi-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 peoplehave adapted to these differences and increased their participation in dailylife. 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 getaround difficulties organizing and regulating actions, postures, perceptions andsensations, speech, thoughts, emotions and memories. Oliver Sacks (Awakenings,1990) wrote eloquently about accommodations developed by his patients withpost-encephalitic Parkinsonism. In my work, I have focused on understandingaccommodations that I see people using, explaining them to others as a way ofsupporting competencies that people have developed. I have also worked withpeople to discover new accommodations that may be useful. My persistentperseveration is rhythm. Those interested in going deeper may look at therecent 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.
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. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
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 autisticways of moving. In contrast, movement differences in people with Tourette’s orParkinson’s are usually accepted as involuntary, and rarely analyzed as if therewere a psychological origin.Martha: Thanks for asking about this. In the early 1990’s a small group of people in
terested in autism began studying the literature on what are called movementdisorders. We lived and worked all over the continent and beyond: <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />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 tounderstand the personal experiences of people who had acquired common movementdisorders such as post-encephalitic Parkinson’s disease, Tourette syndrome andclassical catatonia. Although we understood that growing up with a sensorymovement difference was likely to be quite different from acquiring a differencelater in life, we wanted to listen to the voices of people with neurologicallybased sensory and movement disorders. We listened to people describe how theymay intend one thing and do something quite different or how a person might bejust 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 behavioralliterature in autism. Behavioral literature had described most unusualbehaviors as learned behaviors that could be shaped, extinguished or reducedthrough behavioral technology. Learning challenges were categorized asintellectual and cognitive deficits without consideration of the neurologicalsymptoms behind such challenges. The medical literature on autism used thediagnostic and statistical manual of mental disorders (DSM) to describe autismfor medical practitioners. The DSM did not name neurological symptoms (e.g.abnormal posture, abnormal muscle tone), but instead focused on the resultingbehaviors (e.g. failure to cuddle). The DSM had used phrases such as ‘prefersto’ to describe symptoms with which people struggled and failed to mention thelikelihood 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. Withoutthe 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;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 seriouslybelieve that autistic people are not qualified to explain much of anything aboutautism. Or who believe that anyone who can talk about such experiences somehowdoesn'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 definingit is that (sometimes, at least) my choices are limited: I can either saynothing, say something that has nothing to do with what I really mean, andwhich 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 presentsitself, that is what I do. But the fact that I can do that at times is taken asevidence that the other times, the silent times, the squawking times, arerepresentative of my "choice" not to communicate properly. I can argue aboutthat, or I can accept that I am seen as a rather silly-acting person. Since I'drather be seen as silly than incompetent or uncaring, I have accepted that viewfor 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 amand am not joking at the same time, and that can either be unnoticed by peopleor taken as passive-aggressive or somesuch. It's a little frustrating to beaware of all these layers and possibilities all of the time, and to know that Ihave 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 thatthis is an extremely complicated topic and one that fascinates me. When I speakto people about the possibility that a person’s challenges may be related toorganizing and regulating actions, postures, speech, thoughts and emotions, thenotion of ‘on purpose’ rears its lovely head. People describe an event that didnot go well for someone and demand to know, “Was that a sensory movementdifference or was that a behavior?” I like your idea of semi-voluntarysquawking.A friend of mine who experiences a significant and powerful movement difference once
accompanied me several city blocks to a favorite restaurant. He ran downthe street backwards about 10 feet ahead of me as I walked, briskly, in the samedirection. While he ran, he told me of his strong feelings for sharks and howthe shark was losing habitat and being slaughtered for being a predator. It wasnot easy for him to express these opinions as he was running backwards, glancingover his shoulder for pedestrian traffic and shouting so I could hear. When Ilater asked him why he ran backwards, creating a situation where he riskedphysical calamity and made an interesting conversation into a shouting match, heresponded that he had done this out of choice. He ran backwards as a choiceover sniffing the tailpipe of each car parked at the curb of the streets wetraveled. This sniffing took copious amounts of time and he thought we might belate for our luncheon date with our friends. This sounds a lot likesemi-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 peoplehave adapted to these differences and increased their participation in dailylife. 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 getaround difficulties organizing and regulating actions, postures, perceptions andsensations, speech, thoughts, emotions and memories. Oliver Sacks (Awakenings,1990) wrote eloquently about accommodations developed by his patients withpost-encephalitic Parkinsonism. In my work, I have focused on understandingaccommodations that I see people using, explaining them to others as a way ofsupporting competencies that people have developed. I have also worked withpeople to discover new accommodations that may be useful. My persistentperseveration is rhythm. Those interested in going deeper may look at therecent 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.