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| Carol Greenburg and Matthew Goodwin at the IMFAR 2017 Press Conference [image: White woman with short platinum hair and glasses posing with a taller white man with a shaved head and goatee.] |
Northeastern University researcher Matthew Goodwin gave an IMFAR 2017 keynote speech about his work on "Wearable Sensor-Based Physiological and Physical Activity Biomarkers for Use in Laboratory and Naturalistic Environments to Assess Arousal and Repetitive Motor Movements in Individuals with Autism Spectrum Disorder." Thinking Person's Guide to Autism's Carol Greenburg and Shannon Rosa, and Autism Women's Network's Corina Becker, spoke to Goodwin after the IMFAR press conference, about the real-life applications of his work, and how they can benefit autistic people.
Carol Greenburg: What constitutes a behavior, insofar as it’s something that needs to be mitigated? A behavior like flapping or other “stims” may mean something different to the person who’s doing the intervention, as opposed to the autistic person themselves. What I consider a behavior is different than what you consider a behavior, and therefore the treatment, intervention, or mitigation may differ. Does that make sense?
Goodwin: Perfect sense, and philosophically, we’re aligned. It’s actually a pet peeve of mine that in the clinical arenas, we refer to challenging behaviors as “behaviors” with a negative connotation. Because everything we do is a behavior! All the positive things are behaviors. So, A) I wouldn’t define behavior only by negative consequences. And B) I’m actually more interested in determining the function of these behaviors, assuming that they are purposeful and regulatory, and that there’s a reason, and it’s just our failure to understand what that is. Even things like aggressing to other people, or self-injury. I would rather suppose that that is something of a stress response, or a fight-or-flight response, or a panic response, in the absence of being able to cope or communicate with other people than assume it’s oppositional, or defiant.
Greenburg: Or of frustration that one is not getting through what is perfectly obvious to the autistic themselves, and cannot express, especially because we often don’t understand that other people are not sharing our definitions, or frame of reference.
Goodwin: Correct. And that’s another thing that I like about the physiological measures, is that even when you have a difficult time in articulating to me what might be stressful, or disorganizing, I can record it from your body. I can view it objectively, and I might have a little bit more empathy and compassion for you as a result of that, than assuming you’re not having that issue or because you can’t explain it means that it’s not having some negative consequences.
Greenburg: It is a presuming competence issue at its core.
Goodwin: Yes. And we live in a social world, with norms, and if those norms are violated, we say, “There’s something wrong, get in line,” instead of thinking “What would the world be like for someone who is neurodivergent, and then trying to think about “How do I interact with that person?” So the neurotypical might adjust their behavior to be more complementary in reaction to someone on the spectrum.
Greenburg: The whole idea or norms, it just seems to me that there’s a hierarchy of norms that are important to me, and that hierarchy is radically different for educators, for example, or for professionals, than they are to us as autistics.
Goodwin: I’m not interested in trying to shape anybody’s behavior, unless they tell me they want it shaped themselves. Or a parent is saying it is somehow preventing well-being, learning, or independence for their child.
Greenburg: Well the question is, whose agenda is it? Is it the parent’s agenda? Is it the child’s agenda? Who is benefiting? Who is writing the subtext here?
[Goodwin nods]
Goodwin: I agree. I mean, I don’t know if biosensors are going to solve that problem but if it's another source of information to reflect on yourself and share with other people and to think about, I do see value in it.
Greenburg: Well, pattern detection is always important and pattern detection is what wearable devices are all about so I can certainly can see great value in that.
Goodwin: So you have the FitBit.
Greenburg: I’m surprised that my heart rate is so low. At IMFAR, in this conversation.
Goodwin: So let’s see if it’s different -- I’m at 77, where are you at?
Greenburg: I’m at a mere 69.
Goodwin: not that far out.
Greenburg: Mine should be topping 100, given how I feel.
Goodwin: Do you track how many steps you take? Do you track what your heart rate is doing periodically?
Greenburg: I track how many steps I’m taking. I track my heart rate more because I want to see how upset I am compared to how upset I was before what I was feeling.
Goodwin: Fantastic. So you’re getting some self-insight and self-awareness.
Greenburg: I am using my FitBit for feedback on aspects of my autism, specifically. I also use the meditation function when I start to feel myself hyperventilating. I meditate quite a bit and so I’m able to use it and it’s an invisible way to meditate and self-soothe without doing anything that will necessarily draw attention to me, at a time when it would not be practical for me to draw attention to myself. So instead of rocking or stimming or doing something else while I’m starting to get overloaded I can trigger this and it’s an invisible way of my self-regulating.
Goodwin: You should come work for me. You said that better than I could have said that.
Greenburg: How much are you paying?
Goodwin: We’ll go off record [laughing]
Shannon Rosa: We actually did get questions at Thinking Person’s Guide to Autism on Twitter, when you mentioned alexithymia, asking, “what can I do? How can I do it?” It sounds actually, Carol, like you just explained what people can do.
Greenburg: I mean, in general autistics spend their entire lives—all of us, no matter how much spoken language we have or not—we spend our entire lives in regulating and work-arounds. It’s all about work-arounds. Everything. So the minute I get any new device, the minute I get a new hat, I think of it in terms of, “How is it going help me as an autistic? is this going to shield me from light better than another type of hat?” So of course when I got a Fitbit, it didn’t even occur to me not to figure out, “okay how do I use this?” It’s a little surprising to me to hear a non-autistic point of view saying, “wow, it's really great that you use this as a work-around!” I’m like, “how could I not?”
Goodwin: So here’s where I really would love to learn from your community about the ways that you're using this so that we can provide it to people who can't afford it or have not thought about using it. I mean it's one thing that I can give you that, but the sensor itself is not enough. You have to then take that information and turn it into meaning.
Rosa: Right. Tools are tools.
Corina Becker: I don’t know how usable it is nowadays, but I had an idea a couple years back of developing an app that was basically an alarm system for an autistic person to self check themselves on how they’re feeling.
Rosa: There’s an education point of this regular FitBit that needs to be adapted.
Goodwin: So you’d like to set a threshold and if it was crossed or if you’re getting close...
Becker: Yeah, and basically it would check in and be, “okay, how are you feeling? Are you overwhelmed?” and basically then it would come up with a script that they had developed and say, “do you need help? Here’s a script to present to someone to ask for help.”
Rosa: That would be amazing.
Goodwin: We’re working on that. We really are trying to build that.
Becker: A FitBit version of a five point scale, in the beginning at least. How anxious am I? And from there if it could give me a script, that would be really helpful. It was a very simple app, it was this script: check list of here's what I'm feeling, here are my symptoms, go.
Rosa: Carol and I are both parents of very high support young autistic men and I've been texting my son’s teacher about his regulation throughout the press conference.
Goodwin: Great way of saying that.
Rosa: High support? We’ve been working on that phrasing for a long time.
Goodwin: It’s good terminology. I say severely impacted but that still feels a little pejorative.
Greenburg: Severe. Severity equals, in my experience, how obvious it is to non-autistics which has limited value to actual autistics.
Goodwin: Yeah, great point. I’ve never heard it phrased in terms of support needs.
Rosa: That’s the language that we try use.
Goodwin: Great. I’ll try to do that.
Rosa: Yay! We can go on now.
Greenburg: We've reached one person!
Rosa: I would like to hear more about what kind of outcomes have you seen so far in being able to support people. In high support people, or people with communication disabilities? Have you been able to determine thresholds? Have you seen actual success in being able to detect when people were getting aroused before it would typically happen without your system?
Goodwin: Yes. So for the challenging behavior, the aggression to other people, very concretely, in inpatient units, we’re finding that the biosensor data is predictive of an event about a minute before it happens.
Rosa: Wow, it’s like an early earthquake system, right?
Goodwin: Perfect analogy.
Rosa: It’s actually better because I think they only have earthquakes up to seven seconds now.
Goodwin: Part of what we need to do is try to increase the accuracy of the prediction and give more time to give the warning so there’s more time to prepare for it. But I think as we get more data and there’s more signal processing of that data we might be able to do that.
Greenburg: What I’m wondering is what would that warning look like to the professional? In other words, it’s a very different thing to say, “okay, I’m getting a warning that there’s about to be something happening.” If that’s an actual aggression, if somebody’s going to come up and hit you, it’s useful to know so you can duck. But there’s a way in which it has to be more qualitative. It’s not just that something is coming. What is it that’s coming?
Goodwin: And what should we do about it?
Greenburg: And what should we do about it that will most benefit the autistic person, once again, and not necessarily benefit my ability to control the autistic person’s behavior. That’s another underlying philosophical issue.
Goodwin: I agree. I mean, we’re just alerting. So then the next phase is stakeholder groups. So, you being the autistic person, your people who care about you and who you’ve agreed to have care for you on your behalf—what’s effective for each of those stakeholders in that situation?
Becker: I want you guys to get scripts. Scripts are really helpful!
Goodwin: They’re like safe words, right?
Becker: Yeah, they are like safe words. They are very easy to memorize. I don’t speak as well as I appear to speak because I spend most of my life scripting. Scripts would be very, very helpful to you. Every time the alarm goes off for X thing that’s coming up, if you have a script of how to respond to me quickly, then that’s going to be very helpful to me.
Greenburg: Even a routine. You know this is happening, okay this needs to happen in order to at least decrease the severity or at least help get into position. That would help.
Rosa: We’ve been doing workshops with developmental pediatricians and also autistic people who work in high support young adult groups, on understanding autism and aggression—including potential medical reasons. My concern, and one of the things they talked about, is that sometimes when behaviors decrease and so are "mitigated" from the carer or family member’s perspective, that actually means that the autistic individual is sick or unwell. So I think there are a lot of ethical issues.
Greenburg: I don’t want to be mitigating when my son is already in distress. This is something I don’t want to be mitigating. I want to clarify.
Goodwin: Yes, or some seizures, or gastrointestinal pain, or reflux, or some aversive sound in the environment that nobody else is having a response to. I mean… all I can tell you is the physiology is changing and there’s an association between physiology and behavior. What in the environment is changing the physiology and what the individual and their supports can do about it, that I can’t predict.
Carol Greenburg: What constitutes a behavior, insofar as it’s something that needs to be mitigated? A behavior like flapping or other “stims” may mean something different to the person who’s doing the intervention, as opposed to the autistic person themselves. What I consider a behavior is different than what you consider a behavior, and therefore the treatment, intervention, or mitigation may differ. Does that make sense?
Goodwin: Perfect sense, and philosophically, we’re aligned. It’s actually a pet peeve of mine that in the clinical arenas, we refer to challenging behaviors as “behaviors” with a negative connotation. Because everything we do is a behavior! All the positive things are behaviors. So, A) I wouldn’t define behavior only by negative consequences. And B) I’m actually more interested in determining the function of these behaviors, assuming that they are purposeful and regulatory, and that there’s a reason, and it’s just our failure to understand what that is. Even things like aggressing to other people, or self-injury. I would rather suppose that that is something of a stress response, or a fight-or-flight response, or a panic response, in the absence of being able to cope or communicate with other people than assume it’s oppositional, or defiant.
Greenburg: Or of frustration that one is not getting through what is perfectly obvious to the autistic themselves, and cannot express, especially because we often don’t understand that other people are not sharing our definitions, or frame of reference.
Goodwin: Correct. And that’s another thing that I like about the physiological measures, is that even when you have a difficult time in articulating to me what might be stressful, or disorganizing, I can record it from your body. I can view it objectively, and I might have a little bit more empathy and compassion for you as a result of that, than assuming you’re not having that issue or because you can’t explain it means that it’s not having some negative consequences.
Greenburg: It is a presuming competence issue at its core.
Goodwin: Yes. And we live in a social world, with norms, and if those norms are violated, we say, “There’s something wrong, get in line,” instead of thinking “What would the world be like for someone who is neurodivergent, and then trying to think about “How do I interact with that person?” So the neurotypical might adjust their behavior to be more complementary in reaction to someone on the spectrum.
Greenburg: The whole idea or norms, it just seems to me that there’s a hierarchy of norms that are important to me, and that hierarchy is radically different for educators, for example, or for professionals, than they are to us as autistics.
Goodwin: I’m not interested in trying to shape anybody’s behavior, unless they tell me they want it shaped themselves. Or a parent is saying it is somehow preventing well-being, learning, or independence for their child.
Greenburg: Well the question is, whose agenda is it? Is it the parent’s agenda? Is it the child’s agenda? Who is benefiting? Who is writing the subtext here?
[Goodwin nods]
Goodwin: I agree. I mean, I don’t know if biosensors are going to solve that problem but if it's another source of information to reflect on yourself and share with other people and to think about, I do see value in it.
Greenburg: Well, pattern detection is always important and pattern detection is what wearable devices are all about so I can certainly can see great value in that.
Goodwin: So you have the FitBit.
Greenburg: I’m surprised that my heart rate is so low. At IMFAR, in this conversation.
Goodwin: So let’s see if it’s different -- I’m at 77, where are you at?
Greenburg: I’m at a mere 69.
Goodwin: not that far out.
Greenburg: Mine should be topping 100, given how I feel.
Goodwin: Do you track how many steps you take? Do you track what your heart rate is doing periodically?
Greenburg: I track how many steps I’m taking. I track my heart rate more because I want to see how upset I am compared to how upset I was before what I was feeling.
Goodwin: Fantastic. So you’re getting some self-insight and self-awareness.
Greenburg: I am using my FitBit for feedback on aspects of my autism, specifically. I also use the meditation function when I start to feel myself hyperventilating. I meditate quite a bit and so I’m able to use it and it’s an invisible way to meditate and self-soothe without doing anything that will necessarily draw attention to me, at a time when it would not be practical for me to draw attention to myself. So instead of rocking or stimming or doing something else while I’m starting to get overloaded I can trigger this and it’s an invisible way of my self-regulating.
Goodwin: You should come work for me. You said that better than I could have said that.
Greenburg: How much are you paying?
Goodwin: We’ll go off record [laughing]
Shannon Rosa: We actually did get questions at Thinking Person’s Guide to Autism on Twitter, when you mentioned alexithymia, asking, “what can I do? How can I do it?” It sounds actually, Carol, like you just explained what people can do.
Greenburg: I mean, in general autistics spend their entire lives—all of us, no matter how much spoken language we have or not—we spend our entire lives in regulating and work-arounds. It’s all about work-arounds. Everything. So the minute I get any new device, the minute I get a new hat, I think of it in terms of, “How is it going help me as an autistic? is this going to shield me from light better than another type of hat?” So of course when I got a Fitbit, it didn’t even occur to me not to figure out, “okay how do I use this?” It’s a little surprising to me to hear a non-autistic point of view saying, “wow, it's really great that you use this as a work-around!” I’m like, “how could I not?”
Goodwin: So here’s where I really would love to learn from your community about the ways that you're using this so that we can provide it to people who can't afford it or have not thought about using it. I mean it's one thing that I can give you that, but the sensor itself is not enough. You have to then take that information and turn it into meaning.
Rosa: Right. Tools are tools.
Corina Becker: I don’t know how usable it is nowadays, but I had an idea a couple years back of developing an app that was basically an alarm system for an autistic person to self check themselves on how they’re feeling.
Rosa: There’s an education point of this regular FitBit that needs to be adapted.
Goodwin: So you’d like to set a threshold and if it was crossed or if you’re getting close...
Becker: Yeah, and basically it would check in and be, “okay, how are you feeling? Are you overwhelmed?” and basically then it would come up with a script that they had developed and say, “do you need help? Here’s a script to present to someone to ask for help.”
Rosa: That would be amazing.
Goodwin: We’re working on that. We really are trying to build that.
Becker: A FitBit version of a five point scale, in the beginning at least. How anxious am I? And from there if it could give me a script, that would be really helpful. It was a very simple app, it was this script: check list of here's what I'm feeling, here are my symptoms, go.
Rosa: Carol and I are both parents of very high support young autistic men and I've been texting my son’s teacher about his regulation throughout the press conference.
Goodwin: Great way of saying that.
Rosa: High support? We’ve been working on that phrasing for a long time.
Goodwin: It’s good terminology. I say severely impacted but that still feels a little pejorative.
Greenburg: Severe. Severity equals, in my experience, how obvious it is to non-autistics which has limited value to actual autistics.
Goodwin: Yeah, great point. I’ve never heard it phrased in terms of support needs.
Rosa: That’s the language that we try use.
Goodwin: Great. I’ll try to do that.
Rosa: Yay! We can go on now.
Greenburg: We've reached one person!
Rosa: I would like to hear more about what kind of outcomes have you seen so far in being able to support people. In high support people, or people with communication disabilities? Have you been able to determine thresholds? Have you seen actual success in being able to detect when people were getting aroused before it would typically happen without your system?
Goodwin: Yes. So for the challenging behavior, the aggression to other people, very concretely, in inpatient units, we’re finding that the biosensor data is predictive of an event about a minute before it happens.
Rosa: Wow, it’s like an early earthquake system, right?
Goodwin: Perfect analogy.
Rosa: It’s actually better because I think they only have earthquakes up to seven seconds now.
Goodwin: Part of what we need to do is try to increase the accuracy of the prediction and give more time to give the warning so there’s more time to prepare for it. But I think as we get more data and there’s more signal processing of that data we might be able to do that.
Greenburg: What I’m wondering is what would that warning look like to the professional? In other words, it’s a very different thing to say, “okay, I’m getting a warning that there’s about to be something happening.” If that’s an actual aggression, if somebody’s going to come up and hit you, it’s useful to know so you can duck. But there’s a way in which it has to be more qualitative. It’s not just that something is coming. What is it that’s coming?
Goodwin: And what should we do about it?
Greenburg: And what should we do about it that will most benefit the autistic person, once again, and not necessarily benefit my ability to control the autistic person’s behavior. That’s another underlying philosophical issue.
Goodwin: I agree. I mean, we’re just alerting. So then the next phase is stakeholder groups. So, you being the autistic person, your people who care about you and who you’ve agreed to have care for you on your behalf—what’s effective for each of those stakeholders in that situation?
Becker: I want you guys to get scripts. Scripts are really helpful!
Goodwin: They’re like safe words, right?
Becker: Yeah, they are like safe words. They are very easy to memorize. I don’t speak as well as I appear to speak because I spend most of my life scripting. Scripts would be very, very helpful to you. Every time the alarm goes off for X thing that’s coming up, if you have a script of how to respond to me quickly, then that’s going to be very helpful to me.
Greenburg: Even a routine. You know this is happening, okay this needs to happen in order to at least decrease the severity or at least help get into position. That would help.
Rosa: We’ve been doing workshops with developmental pediatricians and also autistic people who work in high support young adult groups, on understanding autism and aggression—including potential medical reasons. My concern, and one of the things they talked about, is that sometimes when behaviors decrease and so are "mitigated" from the carer or family member’s perspective, that actually means that the autistic individual is sick or unwell. So I think there are a lot of ethical issues.
Greenburg: I don’t want to be mitigating when my son is already in distress. This is something I don’t want to be mitigating. I want to clarify.
Goodwin: Yes, or some seizures, or gastrointestinal pain, or reflux, or some aversive sound in the environment that nobody else is having a response to. I mean… all I can tell you is the physiology is changing and there’s an association between physiology and behavior. What in the environment is changing the physiology and what the individual and their supports can do about it, that I can’t predict.
