BIO HACKING VILLAGE - Workplace Accommodation for Autistics: Autistic Autobiography and Technology Enabled Prosthetic Environments

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BIO HACKING VILLAGE - Workplace Accommodation for Autistics: Autistic Autobiography and Technology Enabled Prosthetic Environments
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our next speaker is Jerry Scott Scotty and he's got some you currently works at the post graduate school and the information Sciences Department I'll let him give you a little more detail about what his expertise is but will they have them and welcome great thank you you can hear me all right I'll walk around a little bit but I'll try to stay up here so I'd like to have this this talk a little bit different particularly with a group of this size just interrupt me as we go through I'd love to just turn this into a conversation and Sue's saying so a couple of things that I've seemed to run into a lot right up front so I'll answer a couple questions before we even get started the first one is choice of terms why I use the word autistic instead of person with autism or person with ASD Arts in the spectrum er disorder that's deliberate that's based on the the policy statement from the autistic Self Advocacy Network about identity particularly identity being so central to a person that a person with doesn't seem to apply very well and so I use that I do kind of go back and forth a little bit because I bounced between academia and hacking communities and and sometimes you have to to say what needs to be said but I do take that approach I take a neurological diversity approach to my research and try to be in inclusive of autistics in my research not studying that thing but studying with and growing with there's the second thing that I often get is why does the Navy care about this I'm at the Naval Postgraduate School and I'll get to that in the workplace a little bit why we care about autistics in the workplace just like any other information centric business but we also have through the congressionally mandated research program a deliberate autism research program in the military studying both adults and children as they relate to families my work is primarily based on adults and I'll talk about my daughter here in just a little bit but that's kind of the the questions up front that I do like to address so the the Arceus lab there applied research in cognitive information sciences we are just standing that lab up at the school it will be a wet lab it's cognitive psychology based the lab director dr. Molly McGuire a cognitive psychologist out of listen Claremont Graduate was her PhD she's a newest faculty member and it's a shift in direction for the information Sciences department to recognize that the cognitive sciences are just as important to what it is we're doing in that field and so it is I'm the more technology side of it and she's the the more cognitive psychology side of it but new lab they were standing up we're getting into some pretty interesting work I think so why do we we care what
we found over the past several years is a recognition and a change in business from treating autism as a disability and disorder too often something that's desired there are skills within the autistic way of thinking that are useful particularly in the information fields information related fields so even in the Israeli military they're they've set up a special unit for autistic analysts that they're looking at and you see lots of articles like this and yet a unemployement artistic the adults is one
of the highest in the world this is for the associate for advancing futures let's the adults I can't remember the organization that's why because I have it wrong advancing futures for adults with autism this is their numbers but we are looking at incredibly high unemployment and we see that also in artistic autobiography which I'll talk about in just a moment the motivation then is we are not creating the workplaces we need to keep people on the spectrum employed and that's a failure on the employer side and societal side more than it is on the artistic side it's not we need to shift our mindset from adapting the person to the work environment to adapting a work environment to the person and we have a lot of experience in this we know how to
do this particularly for physical disabilities we've been doing it for years and years and it's gotten much better so the picture you see on the on your left there is from the 1960s that's not exactly conducive work environment for somebody who has to work out of a wheelchair leaning over a desk working off his briefcase reaching over phones and we've come to the point now of a military guy where we're sending soldiers from their missing limbs back out to Iraq and Afghanistan because we know how to address physical disabilities there's lots to do in that area as well excuse me they'll be and there'll be a couple presentations on that this afternoon but we have a 50-year head start or working people working with access for physical disabilities has a kind of a 50-year head start if you will another problem that we find is that autistics often have a challenge of social interaction and so self-advocacy becomes an issue if you are if you have a lot of social anxiety and are too nervous to address the problem of your environment with your boss or you don't quite know how to say the lights are too loud and the noise is too bright and things like that then you can't create the place where you need to work and that brings up the an associated problem is that there's so much variation within autism people on the spectrum in the room so I'm sure there's some of us and I extend the spectrum because if we take diversity approach to this autism is not a thing it is not just this one disorder that we can now address on a side project we're working on what I'm calling a multi-dimensional description of neurological difference because everybody's just a little bit different I am NOT diagnosed with autism I am diagnosed with ADHD but I have significant sensory issues and so I create my office environment in a way that allows me to work and focus but I don't have other things that are commonly associated with autism and so we need to be able to define and address that diversity of experience in a dynamic way we can standardize skews see if I trip over everything here we know
how to design environments that are prosthetic in lots of areas we come up with design principles the what the picture in the center is the headquarters of Lighthouse for the blind and is designed that way to ease movement through the space you you know how sidewalks are these days with crosswalks that are make noise light up have thresholds on them we build environmental aspects to help us access our environment I'm proposing that we do the same for autism but it has to look different it's not gonna look necessarily like this so my concept I've
been working on this technology enabled prosthetic environments what I realized is that I've been working on this for the last 18 years this is my daughter Anna she's 20 years old now finishing up adult transition program she's severely autistic and minimally verbal so create how do we create a work environment for her what is her skill set if you will under the normal path she folding towels somewhere right currently she's folding towels in the fire department but I think that's because she likes the firemen not so much the folding towels part but yeah but I've been creating prosthetic environments for her whole life so you see that's a picture of her really having a good time at a restaurant she's wearing a hat because she has touch sensitivity issues so she always always wears a hat she's wearing noise canceling headphones because sounds can be too distracting for she creates a soundscape with her phone either it's music or some other YouTube videos or things like that that she's listening to her headphones are also connected to my phone so that if I need to talk to her I can interrupt with an intercom and say Anna we need to we need to go and it's not so disruptive and she's typically wearing sunglasses because things are just too bright and that's stemming from that and I realized that I keep plugging away at getting technology to work for her in all of these different ways we come to the idea of the prosthetic environment how do we dynamically adapt the environment of an individual to fit what it is they need at that time from a neurological perspective and so the idea of I guess TP I haven't even figured out how to pronounce my own acronym but the idea is to improve the autonomy and self-determination of autistics and so the significant issue for someone like my daughter who right now requires 24/7 constant care has a habit of wandering off and she has seizures as well and so if we're going to enable someone like her to have more autonomy and self-determination we have to start in interpreting her interpreting her state and helping her to communicate her needs when she may not have the ability to verbalize them and so we want to look at that in in living conditions reducing caregiver requirements and caregiver fatigue and setting up work environments that are conducive both to the autistic worker and the more neural typically worker if more neurotypical workers if you've worked with people on the spectrum you can know that sometimes they can be ignoring of course a lot of other people can be ignoring too so sometimes we like to turn down the volume on all of our co-workers but we need to create the environments that are conducive and that's what we're trying to do here so because I feel I'm a little neurotic we'll diverse but I don't necessarily have that experience and the experience of autistic is different than in spirit then a the experience of the next autistic down if you will is not something that we're going to clearly define and put in boxes and we're really trying to push against that just labeling very a very simple label like I gave severely autistic and minimally verbal that doesn't give us enough information so the study that I'm
sorry well so what we're trying to do with that is to create the technology around the person that senses the state of the person the state of the environment and then adapts the environment as needed so that includes wearables embedded portable computing in a large part of what we're doing is up on the top this integrating of the technology that in fact is our biggest challenge things like fitbit's and other wearable things often exist within their own silo and we need that data other places so we're looking on a computer science side of how we create wrappers around commercial grade technology so that we can incorporate it into such an environment and this is where I like things to shift to a discussion as we get a little further in this because that's what I like the hacker community to work on but corporations won't necessarily do this this is potentially not a very money-making scheme here but if we can begin to integrate pieces of technology better we can get better use out of them and so wrapping technology and other software that helps control it there's a large part of what I'm looking at the next challenge is to to monitor both the individual physiology and the current environment that they're in and I'll talk about a study we're just starting off in a few minutes about that and then we need to allow the individual to have more control to adjust that environment and also support that with automated control of that environment if for example the environment senses that the sensors on the person see that the environment is getting louder and there's certain sounds that are incredibly annoying to the individual then can you change the soundscape that they've got in their earphones to offset that turn on the noise canceling or or change what's being played it's that type of reaction and reactivity of the system that we're trying to build in and automate but the study has got to start with the autistic
individual and so centered there is the person and all of the different types of things the pieces of information that we would like to integrate and move back and forth and I'll come back to that in just a minute but that's where the challenge is and that's where I hope the hacker community can start helping us plug some of these things together so
got to start with the autistic so this the current study is a qualitative study of autistic blocks of better trying to better understand the autistic experience and define it in a way that technologists who might not share that experience can start to work towards assisting with that so recognizing that even though these blogs are public and publicly accessible there is a sensitivity with the individuals in there sometimes there are access issues there are some discrimination issues and so for now we are we are not associating what we're finding in this review of the blog's with any individuals so some of you in this room may have written some of the quotes that will come up in just a minute and we're working through that now with some autistic collaborators on this project of really getting at bringing in autistic autobiography into the discussion of autistic diversity and access and the discriminant and the discrimination that's often associated with that and so we're trying to give voice to two people on the spectrum and I'm gonna rip this microphone off at some point so I won't go into the details of how we're setting up the study we're doing this as a qualitative study and what we're finding some things right so these are some early observations of what reef is being reflected by multiple authors of autistic blogs and many people are familiar with some more full autobiographies or formal autobiographies Temple Grandin's of course written a couple books you may know the book Ito in autism land is a formally nonverbal autistic who now types this extends past out a little bit into this less formal autobiography what if what did people write on a daily basis what I post on Facebook what goes on Twitter and that's kind of stuff we're looking at so first of all it's a recurring discussion of the physiological phenomena of the experience of autism that is different than what neurotypical is often report so here's an example all the different streams seem to individually assault my sensory system and cut to the heart of my ability to function you have sensory issues completely stopping the ability to work so how do we deal with the sensory issues and not say well then you can't work so there's often a big distinction between what a person thinks about themselves and what they're doing and what's going on in the external world wouldn't say that's necessarily unique to autism but the the expressions of that become very different what particularly when you find the difficulty in self-advocacy in expressing what the changes are and so we can reflect that better we can improve outcomes I think recognition of difference right so we often depict or the autistics are often depicted as being socially unaware and not knowing about their own differences in behaviors or or social settings and what we're generally finding is no that's not true they're hyper aware just not necessarily as good at expressing it and don't see the need to follow that stupid social rule and so figuring out how we a society can accept that type of diversity that's on us communication between neurological a diverse and neurotypicals is often an issue I don't know to talk about this or I see it from this side but I create this misunderstanding and then what are relationships like between the neurologically diverse and the neurotypical right I my daughter I wish was more verbal I would like to know how she expresses or how she views the relationship for example with their sister which is very close and her sister advocates for her a lot but I can't get it in her words and so part of the study is kind of seeing where the experiences are the same in a divergent group of people but this is where the
kicker that's come in a lot is the response to stress is a challenge for many people on the spectrum the the physiological changes may be different we're not sure about that but stress impacts almost area every area of life is what we're seeing all the time it increases OCD type behaviors so one thing that in the neurological diversity movement we want to talk about is the difference between disorder and diversity there are clearly disorders associated with autism epilepsy for one is very common that's a disorder if we don't talk about autism as that disorder we still have a need to address some of these types of things the OCD is another one my daughter is very strong OCD tendencies that get worse when stress goes up we can observe that let's see there we go this multiple streams of noise some people have the ability to focus in a noisy environment other people don't that's an issue that I have there's a conversation going on in that room right now that I can almost hear and that distracts of what it is I'm trying to talk to you about people can be the problem we all know people that are the problem but if you if you can't work in an open office environment you can't work in an open office environment that's just how it is for some people and again instead of shoving the people in the norms that we've already created why can't we adjust the environment and then in appropriate response this is a social issue you get stressed you get silly when you should get serious how do we let other people know well that's okay and then this idea of how different am I really and how do we address that so those are the things we're flying finding what we're hoping to do with this is use that as the starting point for designing these types of systems and
so where we are right now because stress is so important and I'll pause just for a moment so the study we're kicking off right now is to use wearable sensors Fitbit type devices the one we're using here is a research device but it has the same sensors we have in our fitbit's can I use that and other information that I received from the person to in real-time identify the onset of acute stress we believe yes we're validating some of these sensors we're working on some machine learning algorithms the study that will do it will be fun in my view because we get to stress people out intentionally of putting wearable sensors on people sending them sending the data into our algorithms and then stressing them out and then because we've set up a wet lab now comparing that against salivary cortisol which is kind of the gold standard if you will of physiological response to stress so can we get consumer-grade wearables to give us accurate enough information that our algorithms can detect when that stress starts and then can we do something about it so these are two elements that of my daughter's environment the noise canceling headphones the bottom one is a vest that one is I can't remember the name of that vest it has air bladders in it though and so it's controlled via cell phone so she can get a hug without having to interact with a person and so the integration step next is to use the data coming from that watch to change the soundscape and turn on the vest automatically without user control combined with that is the environmental sensors that we can embed in the home in the work environment to figure out what it might be about the environment so one thing that took us about three months to figure out when in one school that she was in is that the fluorescent lights that they had in that room were really a problem and all it took to make her situation that much better in that classroom was to leave the lights off very very simple things like that and that's where the machine learning comes in on this because if I'm sensing all of these things about the environment and I'm measuring the physiological response to the individual I can start to record that and associate this type of environmental condition causes this type of response and so you saw the the chart I had up before of all the things we'd like to do this is what we're working on right now can I take a heart rate data those are more familiar with that heart rate variability in particular and there's several different ways to measure that can I use skin temperature galvanic skin response movement right so or is the person being very very jittery doing lots of self-stimulatory behavior is that an indicator of stress or not all of the environmental x' and in this case just doing two things give her a hug and change the volume of her surroundings simple things but there's a lot of integration that we have that we have to work on and that's kind of where I'm at and I really just want to open this up
now for a discussion of what might be possible what might we do what is it that you're working on that we can plug into this type of environment go ahead yes changes in state as related to what
kind of things yeah that's absolutely stuff that that I want to be able to track more and I do so so one of the things you might maybe we can hear this let's see he'll play a quick soundscape here if I can so this is one that we use for for focus if I can turn it anyway there we are monitoring soundscapes what I'm not able to do right now one of the biggest challenges I have now it starts I see questions because we are so for example my daughter will not wear that wristband sensor no way no how I never wear anything on the wrist ever and somebody UT though is working on the graphene-based essentially a tattoo that is the same sensor that's the type of stuff I'm trying to gather now is who's working on what that isn't gonna make this type of stuff doable another question please go ahead can you hear me I'm not sure it's turned on it that went on there it's on okay um two things one just an observation it seems like this and you can't TP yeah yeah I don't know what to call it yet if you got a better name I'll take it seems like you could use this also for something like depression just monitoring someone's physical experience and adjusting it like that absolutely is a question do you know how much brain mapping has been has been done on autism and to incorporate brain computer interaction with this two very great points thank you so the first one absolutely we are very closely looking at this particularly for PTSD another thing the military is very interested in but in discussions with people the the idea of this type of dynamic environmental control we think can help with a lot of mental health challenges diversity and people in general right apparently this room air conditioning doesn't work great in this room at what point does that start to distract all of us from the discussions we're having and then your second one real quick again was right so there there is several studies that ongoing and there's been lots of lots of work in this but there's a couple challenges with kind of the academic or formal research side of what's going on in there first of all to do things like functional MRI requires a certain level of compliance and that can be a challenge in this community can we actually get them to work inside of a functional MRI if you've been in an MRI they're not quiet and can we make this stuff happen new things new tools are coming into use right now that are very useful for this f nears if you're familiar with that functional infrared so we can place just an infrared sensor in a certain location the other challenge or problem that I see in that area of research is that the not necessarily where the money comes from but what the money's been allocated to it's often allocated primarily to diagnosis and early intervention and so looking at where the problems are rather than which which parts of the brain are functioning and how they're functioning a related topic is what we've seen when when we do sensory substitution research in several areas some research those going on at youth Baelor now going on at stanford has to do with substituting what is normally visual information into some of sensory or haptic what we find in that particularly in individuals who are blind or if we are doing a sensory substitution from audio to haptic indef is that the the parts of the brain associated with the replicated function are often activated so if I'm providing visual information by sound then we see the visual cortex often lighting up and processing that information is a visual way so there's a lot we don't know on how that works and that will definitely help us to create better environments for this so thank you for the comments yes please hey thank you and so a couple of things one I want to empower you that you have said that maybe this isn't going to be something that can make money mm-hmm but right now the big wave in especially government grant funding etc is work mm-hmm so how do we train people and how do we help people work so I think you can access a lot of grant funding especially from the NSF NIH etc partnering with human-computer interaction labs because when you're saying the funding for these medical programs are on prevention early intervention but human-computer interaction labs are designing for accessibility and usability exactly those partnerships and then just kind of another design challenge that can lower the barrier to entry for building these technologies taking a machine learning approach is going to require a lot of sophistication but you could also take an approach where you create a to finite sets right so you have a finite set of stimuli and you have a finite set of reaction and then what you can do is have this the user control they'll say okay I have this finite set of stimuli and this is the set of reactions that I want map to each and then for instance in order to dynamically update as they learn and grow you can have something where once a month it triggers the user to review their controls and see if they want to rematch yeah good points thank you for that we are working with the Watson open source community to make some of the machine learning stuff we need to do more accessible but that that idea of user control of giving the person using the environment the ability to manipulate the settings and then have that environment use that feedback is very thank you for that yeah exactly other comments how we're doing on time here yeah we got a few more minutes any more questions yeah wanted to call out I'm really happy to see somebody taking such a applied take on wearables I'm really waiting for a couple of years to see those really take on a more meaningful approach that I put LEDs on my body right but really I wanted to circle back on you talked about your multi-dimensional analysis of differences I think you called it I'm wondering if you're considering something like a Meyers big Briggs spectrum where you have like a series of just a short a B selections that compass a pretty wide variety and are pretty widely known personality traits in applying a similar model to just at a glance know what potential triggers and stimuli czar for this guy yeah it's it's I think it's going somewhat in that direction to to identify so so things a dimension might be sensitivity to sound and that might mean but also have to be broken down into volume or certain tone or waveforms and so detangling all of those if you will so so if you take this if you take every one of these you know around the 360 degrees as a different dimension you come up with a a radar plot if you will of how sensitive a certain dimension is and then then you can say something like we do with myers-briggs intp or something like that and so you can start to better identify the differences within of the neurological challenges and not just older autistic right I think that is very limiting and how we define it but so thank you self disclosure self identity right I agree of advertising that perhaps if not explicitly at least non-verbally mm-hmm so that people approaching know how to deal with these other interactions that are not going to be typical inter human interaction exactly in some cases not every case but in some cases the bad with LEDs on it might be a very very good thing when it's connected to my physiological sensors and things like that and it can give my co-workers the red light to say don't talk to me right now come back when I'm in a better shape things like that I I just hang it outside my door my office and just say don't bother me ever but that's yes absolutely those are the things that we need to work on thank you for that well thank you mm-hmm and I think we're about done I'm gonna work the door next hour so if I'd happy please stop by and let's chat more because the the next thing that we're doing I'm going back to a website that we had a few years ago and standing that back up called artistic org to try to get more grassroots makerspace projects into there there's a few projects up there now I don't even think you can get to the website right now but if if you've got a project that you think might fit into this type of construct I'd love to hear about it love to have you write about we're working on a internet-connected toilet right now because my daughter and many others likes to play in water and likes to see what will and won't flush and that causes me a couple hundred dollars a month plumbing bills and so not letting your flush when she shouldn't that's a design challenge right so thank you thanks everybody love to talk to you outside [Applause]