Sensory Processing and Support for Home and Community Settings

Dr. Virginia Spielmann Author

04/11/2023 Added

38 Plays

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2023 Conference Session

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[00:00:00.030]Help me welcome Virginia.
[00:00:02.000](audience applauding).
[00:00:06.884]Okay, hi. Thanks so much for having me.
[00:00:11.286](indistinct)
[00:00:14.676]And I leave it that because when we are trained in England,
[00:00:20.764]to be OTs, he social model of disability is not optional.
[00:00:24.390]It's like part of your feelings,
[00:00:27.071]it's a threshold concept, which means,
[00:00:30.670]learn it, hopefully there's no going back.
[00:00:33.180]It really changes you and it's necessary
[00:00:36.030]to be an OT in the UK.
[00:00:38.400]I was really amazed when I moved here
[00:00:41.190]and I had to do a master's, I was already doing my PhD,
[00:00:43.680]started talking to other OTs and some of them hadn't heard
[00:00:47.880]of the social model of disability, and I was like,
[00:00:49.740]can you be an OT?
[00:00:51.750]And the social model of disability, really,
[00:00:54.480]hopefully you're all familiar with it,
[00:00:56.040]but the social model of disability refers to the belief
[00:01:01.534]that the disability experience is not on the individual.
[00:01:07.050]It's really, it's on the environments that they, you know,
[00:01:11.310]occupy and live in,
[00:01:12.900]it's on cultural expectations, societal norms.
[00:01:17.130]Most of what creates the disability experience is
[00:01:22.674]lack of accommodations and this sort of strange idea
[00:01:26.574]that's taken over the western world
[00:01:28.919]that there is one right way to be human.
[00:01:31.680]So I lead with that because I want you
[00:01:33.330]to know that's where I'm coming from
[00:01:34.944]so you might hear me talk slightly differently
[00:01:38.670]about some concepts you're already familiar with
[00:01:41.220]and that's one big reason why is because I come
[00:01:44.130]from this social model perspective.
[00:01:46.920]I'm curious how many people in this room are OTs?
[00:01:50.760]Quite a few of you, welcome, welcome,
[00:01:55.494]parents, but you can be both, speech therapists,
[00:01:59.790]BCBAs or ABA practitioners or they didn't show up, okay.
[00:02:04.892](audience laughing)
[00:02:06.324]autists.
[00:02:08.820]Hi, me too.
[00:02:11.190]Okay, so that just I welcome questions as we go
[00:02:15.570]by the way, I want this to be worth your time.
[00:02:18.630]It's not really about the fact that I can get away
[00:02:21.480]with quite a lot because of my accent.
[00:02:23.070]Like that's not really the point.
[00:02:24.510]The point is you actually get good content.
[00:02:26.400]So make sure you ask me questions.
[00:02:30.240]And I'm gonna talk first, you know,
[00:02:31.950]what on earth is the sensory integration process, looking at
[00:02:35.160]the makeup of the people in this room, it sounds like you,
[00:02:37.860]most of you might already have a clue.
[00:02:40.200]The people who we really need to hear this are
[00:02:41.847]the people who aren't familiar, but we'll start this way.
[00:02:45.810]Okay one of the things I really work hard to do
[00:02:49.230]is make these concepts that have been, you know,
[00:02:53.820]around in OT for decades, relatable.
[00:02:57.480]'Cause one of the things we've done as OTs is just really
[00:03:01.944]just indulged in jargon, and so, you know,
[00:03:04.860]when I get in an Uber and the taxi driver asks me what I do,
[00:03:09.000]if their eyes glaze over, I've got a problem, right?
[00:03:13.440]Sensory, oh, I lost him, okay.
[00:03:16.244]And so we are really trying to figure out ways
[00:03:19.110]to give everybody tools to explain this so that it tracks,
[00:03:23.220]so that it makes sense, so that it's relatable.
[00:03:26.880]I did do a TEDx talk on it,
[00:03:29.670]which was a lot of that work about really trying
[00:03:32.760]to make it relatable, and it's not a great TEDx talk
[00:03:37.264]by the way, but if you look it up and watch it,
[00:03:39.630]it's about sensory health and the sensory reform lifestyle.
[00:03:42.690]Play it at like 1.25 speed 'cause I was a bit too slow.
[00:03:47.040]And then I was also on the Chasing Life podcast
[00:03:50.100]with Sanjay Gupta talking about it, which was really fun.
[00:03:53.520]And those are just, I tell you those
[00:03:55.680]because yeah, obviously I'm amazing...
[00:04:52.284](indistinct)
[00:06:12.817]Yes, right.
[00:06:15.810]Same with vision, right?
[00:06:17.067]Can do you believe that we can provide
[00:06:21.734]that process visual stimulus.
[00:06:23.854]Yes most people do, can it go wrong?
[00:06:25.320]Yes, hello? Here's an example.
[00:06:28.440]Of what we're dealing with okay.
[00:06:31.260]So very kind of
[00:06:32.999](indistinct)
[00:07:00.577](indistinct)
[00:11:13.470]It's not just saying it it's urgent
[00:11:16.260]because I'm vigilant and I might die
[00:11:19.710]even though, right, I'm an adult.
[00:11:21.360]I totally turn the wifi off.
[00:11:24.710]Our systems come online and we make it
[00:11:28.470]to the, we shut the door, right?
[00:11:32.874]Can you give you that illustration
[00:11:34.594]'cause I hope you were able to go with me
[00:11:36.900]on that journey and just recognize
[00:11:39.630]what hypervigilance might feel like and look like
[00:11:45.120]when our fight or flight or our primitive defense systems
[00:11:49.110]have been tripped, that alarm's been tripped,
[00:11:51.540]that Bat Phone's gone off.
[00:11:57.973](indistinct)
[00:12:00.300]Yeah, we're gonna talk about that
[00:12:02.820]So the sensitivity
[00:12:08.073]towards this hypervigilance is heightened in
[00:12:10.650]the autistic population and that's because regulation
[00:12:14.190]doesn't come as easily and we're gonna talk about that.
[00:12:19.200]And so, you know, this is,
[00:12:21.270]we talk about how many sensory systems they are, there are,
[00:12:25.650]and we've talked about it kind of to death.
[00:12:29.460]There's definitely more than five,
[00:12:31.260]but depending on what discipline or profession you work in,
[00:12:34.620]we categorize them very differently.
[00:12:37.560]One example in OT that makes me want to pull my hair out
[00:12:41.370]fairly regularly is we talk about the tactile system
[00:12:46.590]and really we're talking about the cutaneous system
[00:12:49.830]because we talk about every type of touch
[00:12:52.680]and vibration sensation and sometimes pain sensation
[00:12:55.440]and temperature registration
[00:12:57.870]and we put it all under tactile.
[00:12:59.580]And I share that as an example of these things are really
[00:13:03.420]hard to categorize,
[00:13:05.100]but the main thing I want you to know is there's a lot
[00:13:07.860]all the time and yes, that is me in the corner.
[00:13:10.830]My team thought that would be funny.
[00:13:13.231](audience laughing)
[00:13:14.130]I'm still not sure,
[00:13:16.530]but all these things that we are dealing with, wow,
[00:13:19.650]we are dealing with so much all the time.
[00:13:23.580]And that's just an example.
[00:13:25.200]And this has come from one of our infographics that we have
[00:13:29.610]available for free on our website Sensoryhealth.org.
[00:13:35.184]Okay, and all of these systems
[00:13:37.500]that are really hard to categorize are open systems,
[00:13:41.400]which means they, what we, what we've done historically is
[00:13:47.130]we've all sort of bought into this story that slightly come
[00:13:50.220]from the medical model also come from lots of other places
[00:13:53.670]that we can silo out aspects of human functioning.
[00:13:58.020]It's a siloed mentality and we've done it
[00:14:00.420]with sensory as well, so you know, you see that when you
[00:14:04.954]you see the sensory playgroup and it's just messy play.
[00:14:07.410]Or you know,
[00:14:08.460]someone is dealing with sensory in a uni-sensory way
[00:14:13.854]or I'm gonna do sensory here.
[00:14:17.040]The speech therapist is gonna do communication there.
[00:14:20.940]The counselor's gonna talk about feelings here
[00:14:25.260]and maybe the physical therapist will do posture over there.
[00:14:29.250]And then the learning happens
[00:14:30.510]in a completely different site.
[00:14:32.460]And that actually doesn't make sense when you really
[00:14:36.210]look at how humans work.
[00:14:38.370]Learning is sensory, communication is sensory, right?
[00:14:42.060]Communication is learning.
[00:14:44.669]And it's all got emotional content to it.
[00:14:46.560]So all of these things feed into each other and that really
[00:14:51.030]helps us move away from sort of binary linear thinking
[00:14:54.690]about like people's profiles and how, you know,
[00:14:58.380]their strengths and where they're at
[00:15:00.090]and those sorts of things, this is a,
[00:15:01.770]this is from a really lovely comic that came out
[00:15:04.710]quite a few years ago, but I,
[00:15:07.181]a lot of people have sort of plagiarized it,
[00:15:10.680]riffed off of it.
[00:15:11.640]It's Rebecca Burgess, I've got her permission to use it
[00:15:15.704]and the links there and you will get these handouts.
[00:15:17.790]I was just terribly late to send them.
[00:15:20.610]But you know
[00:15:21.570]one of the reasons I like this is 'cause she was one
[00:15:24.720]of the first people who really showed us a nice visual
[00:15:28.034]of like, it's not all or nothing, it's, you know,
[00:15:31.380]a spectrum doesn't mean a black line from bad to good
[00:15:37.889]or low functioning to high functioning,
[00:15:39.750]which is like really problematic language
[00:15:42.000]for understanding complicated humans.
[00:15:44.520]And and what we've got is much more of,
[00:15:46.620]a much more of a actually 3D plotting
[00:15:52.860]of how people are doing is where we need to go.
[00:15:55.770]But you've got like all of these different things that you
[00:15:58.140]could plot for each person and then the fact that it might
[00:16:04.500]change tomorrow because they didn't get enough sleep
[00:16:06.600]or they got more sleep or, you know,
[00:16:09.510]imagine something really big happened in the world.
[00:16:11.970]I know it's hard to imagine,
[00:16:13.440]but imagine like maybe there was a lockdown
[00:16:15.990]or something like that and everyone had to stay indoors.
[00:16:19.170]This is gonna change with those fluctuating influencers
[00:16:23.040]from the environments in which we operate.
[00:16:26.040]Okay.
[00:16:28.380]And then this is a conceptualization
[00:16:30.630]from Dr. Lucy Jane Miller who are,
[00:16:33.060]was the founder of the Star Institute
[00:16:35.610]and I apprenticed under her of how you might think
[00:16:39.674]about differences in the sensory integration process.
[00:16:44.040]And one of the main things I'd love you all
[00:16:45.840]to take away today,
[00:16:47.910]and I'm aware that you'll probably take away one thing,
[00:16:49.980]right, I get it,
[00:16:51.750]but is that it's way more than sensory modulation disorder.
[00:16:56.700]It's way more than sensory over responsivity.
[00:16:59.550]Sensory over responsivity is hugely
[00:17:06.300]overrepresented in discussions
[00:17:08.400]about differences in the sensory integration process.
[00:17:12.240]Most of the research into sensory integration
[00:17:15.690]and autism looks at sensory
[00:17:17.280]over responsivity, but there's so much more
[00:17:20.580]to the picture than just that piece,
[00:17:23.970]and so I really want to sort of emphasize that
[00:17:26.400]and hope that you'll be able to take that away.
[00:17:30.120]And so this is where I think, this is a really helpful
[00:17:33.360]for me image of a spectrum
[00:17:38.850]and actually talking more about a constellation
[00:17:42.771]is really helpful too.
[00:17:44.791]And so this person exists in time and space and there are
[00:17:48.030]all these different influences and there are these different
[00:17:52.470]axes that you can think
[00:17:55.524]about and how they influence function.
[00:17:59.940]And like I said,
[00:18:01.050]it'll be different at different times of day.
[00:18:09.039](indistinct)
[00:18:11.910]Yes, everyone has like
[00:18:13.594]a like a natural range of function that you know,
[00:18:17.730]and if we were really good at mapping these things out,
[00:18:19.890]we could probably like, you know,
[00:18:21.990]I dunno what it would look like actually, but you know,
[00:18:24.694]on a good day it's more over here
[00:18:27.780]and those sorts of things, but it's incredibly dynamic.
[00:18:30.960]So for example, one piece that's problematic with
[00:18:35.840]the high functioning and low functioning language right,
[00:18:38.520]is you've got your high functioning autistic
[00:18:43.290]and then they don't get enough sleep and there's emotional
[00:18:48.120]stress happening at home, and the pressure changes,
[00:18:53.820]the weather changes, and they might lose language that day
[00:18:58.830]or their language might become more unreliable or the effort
[00:19:02.520]they have to put into communicating is like amplified
[00:19:05.520]so much and then they don't look so high functioning,
[00:19:09.060]but people don't really have patience
[00:19:10.530]for that because that's the label they've been given.
[00:19:13.050]So this dynamic fluctuating aspect of human function
[00:19:18.180]is really important to hold
[00:19:21.540]while we discuss something like this,
[00:19:24.840]which is really easy to kind of boil down and oversimplify.
[00:19:27.810]And I don't wanna do that 'cause I think that's detrimental.
[00:19:32.670]Oops.
[00:19:33.870]Oh, did I just go through like all the slides?
[00:19:35.400]Okay.
[00:19:36.900]Okay, and so we talked a little bit about regulation.
[00:19:40.170]So when we're talking about regulation, what we're talking
[00:19:44.423]about is my physiological state regulation
[00:19:48.810]and my state regulation, or my state of arousal,
[00:19:55.440]that's something that we learn we're supposed
[00:19:58.470]to learn in infancy in those first months of life
[00:20:02.070]outside the womb, that's supposed to come online
[00:20:06.030]because we experience the calm of our caregivers.
[00:20:10.410]Our caregivers kind of lend us their nervous system
[00:20:13.260]and their frontal lobe and those first few months and
[00:20:16.290]through socio-sensory exchanges and emotional exchanges,
[00:20:21.120]which were really hard to explain before we all became
[00:20:23.940]reliant on wifi.
[00:20:25.590]But caregiver infant wifi helps you learn state regulation.
[00:20:31.080]You learn to be regulated
[00:20:32.340]by experiencing regulation, that's called co-regulation.
[00:20:38.910]And if I'm regulated then I am calm enough
[00:20:44.820]and alert enough for the activity I'm engaged in
[00:20:48.870]and I'm available that's the key part right there.
[00:20:53.206]So a lot of our kids who,
[00:20:54.990]and you'll see something I've created later
[00:20:57.510]to try and explain this a bit better,
[00:20:58.890]but a lot of our kids who get dysregulated
[00:21:01.710]and self-absorbed are calm but unavailable,
[00:21:07.020]but they get missed because they're calm
[00:21:09.030]and it's kind of convenient.
[00:21:10.860]You know, a lot of what we do,
[00:21:11.970]a lot of the work we do is sort
[00:21:13.440]of focused on this idea of the child of least resistance.
[00:21:16.650]And that means that the child
[00:21:17.760]of least resistance get overlooked when they need help.
[00:21:21.240]There's an OT called Bill Wong who moved
[00:21:23.160]from Hong Kong and he, and I used to live in Hong Kong,
[00:21:26.070]he came over to do his OT degree in the US and started going
[00:21:30.780]on field work placements and his field work educators were
[00:21:33.480]like, yeah, I thought you might be autistic.
[00:21:36.360]And he was like, oh no, not really.
[00:21:39.990]And then, you know, it happened again, it happened again,
[00:21:41.730]and he, yes he's autistic and it's
[00:21:46.860]very apparent when you meet him, and what he says is,
[00:21:49.800]the reason I was missed is 'cause I was compliant,
[00:21:52.380]I was a good boy, I was studious, I was isolated and alone
[00:21:59.044]and lonely, but nobody thought I was dysfunctional
[00:22:03.540]so they didn't do an evaluation.
[00:22:05.250]The happy autistic gets overlooked as well.
[00:22:08.250]The quiet autistic and
[00:22:09.270]the happy autistic, the DSMs criteria
[00:22:11.910]is not for happy autists, it's for distressed autists.
[00:22:15.210]And that's how we figure out what's going on.
[00:22:17.880]But that's a whole different keynote talk.
[00:22:21.300]So we are thinking about this state of arousal, right?
[00:22:24.600]Am I okay for what I'm doing right now?
[00:22:27.360]It's like an energy state, it's all the way through my body
[00:22:30.630]and it's less to do with my upstairs brain,
[00:22:35.130]but in most of the autistic population,
[00:22:38.610]it's more effortful than it is in non-autistics.
[00:22:43.530]And so that, and an example of effortful regulation
[00:22:46.890]is not self-control and self-governance.
[00:22:49.650]It's more like I just had lunch and now this British woman
[00:22:54.330]is talking at me and I have to look interested.
[00:22:57.960]And you know,
[00:22:58.793]even when you're listening but your face like looks tired
[00:23:02.520]and I'm not, I'm not talking to you, I promise.
[00:23:05.608](audience laughing)
[00:23:08.535]I'm looking at you 'cause you're very regulating for me.
[00:23:12.660]But you're like, I am listening, I am listening.
[00:23:14.610]I have to put all this effort
[00:23:15.900]into looking like I'm listening, right?
[00:23:17.790]Do you know what I mean?
[00:23:19.184]And then suddenly regulation becomes effortful
[00:23:20.730]and it toggles more to that conscious side of things.
[00:23:24.030]For most autistics, regulation is more conscious
[00:23:27.450]than it is effortless.
[00:23:30.840]Yes, I think I got that right.
[00:23:32.820]Okay, so and so regulation is critical to function.
[00:23:37.140]I have to feel safe, I have to feel, okay,
[00:23:39.210]my state of arousal has to be online to function
[00:23:42.780]and to learn, and if I'm dysregulated, I will not learn.
[00:23:47.010]And Dan Siegel has a really nice representation
[00:23:50.400]of this when he uses his hand model
[00:23:52.860]of the brain, which you may have seen,
[00:23:55.590]and so everyone, you are all carrying
[00:23:58.274]around a model of the brain in your pockets,
[00:24:00.240]which is really handy 'cause it's free.
[00:24:02.804]And you've got the brain stem,
[00:24:04.590]the lower brain and the mid-brain.
[00:24:06.420]The mid-brain is the thumb tucked into the palm.
[00:24:09.690]And then you've got your upstairs brain
[00:24:12.240]which wraps over and it's huge, right?
[00:24:16.290]Humans have this like massive sort of rams horn
[00:24:19.800]that wraps over the other parts.
[00:24:23.484]And what, but what happens
[00:24:25.050]is when I'm dysregulated, my limbic system is activated,
[00:24:29.670]my mid-brain and my lower brain and then my upstairs brain
[00:24:33.660]goes offline because I've gone straight
[00:24:35.790]to that primitive defensive state.
[00:24:38.850]I flip my lid,
[00:24:40.950]I'm not going to be available for a logical discussion
[00:24:43.470]about anything, let alone my behavior.
[00:24:45.960]'Cause I'm already in a defensive state.
[00:24:49.470]And I remember realizing this as a parent
[00:24:53.164]with my child, my neurodivergent oldest and you know,
[00:24:58.320]I think I was already studying this and somewhat
[00:25:00.870]teaching it, but not to the same extent as today.
[00:25:04.170]But like he was,
[00:25:05.520]he was refusing to go to sleep because every time he closed
[00:25:08.250]his eyes he could see little red things on his eyelids.
[00:25:11.490]And I was so tired.
[00:25:14.160]I was like, I don't have time for this.
[00:25:15.780]We all have red things on our eyelids, right?
[00:25:18.780]But he's your highly sensitive sensory sensitive kiddo.
[00:25:22.740]And so like, I'm like, you know, trying to validate him,
[00:25:25.740]comfort him, sooth him, move him on, move him on,
[00:25:28.317]move him on, and eventually I'm like, you are not, I said,
[00:25:31.860]you are not being reasonable about this.
[00:25:34.770]And then I was like, oh, busted, right?
[00:25:38.760]Like I know why he's not being reasonable about it.
[00:25:41.370]I still wanted him to be reasonable about it
[00:25:43.950]'cause I was tired and I had my own needs.
[00:25:46.140]But that's an example of what I mean.
[00:25:48.270]When we are dysregulated,
[00:25:51.299]logic, reason and usually language is less available.
[00:25:56.460]You're not gonna wanna talk about your taxes
[00:25:58.410]when you're late for work and you burnt
[00:25:59.670]the toast and the cars frosted over, right?
[00:26:02.880]It's that sort of principle.
[00:26:04.680]And so regulation is
[00:26:05.850]really important and it's something we always have
[00:26:08.280]to start with, and so this is one of your take homes
[00:26:12.000]for community and home success.
[00:26:14.940]You have to start with regulation, you have to.
[00:26:18.360]And if this person isn't regulated,
[00:26:20.640]you have to change what you are doing,
[00:26:23.070]otherwise, what are you doing?
[00:26:25.619]You are imposing again a disability experience
[00:26:28.484]on this individual because your expectations are
[00:26:31.290]not meeting what they're capable of in that moment.
[00:26:34.830]And so we have to start with regulation
[00:26:37.530]and these are the sort of questions
[00:26:39.270]that I would ask anyone supporting another human.
[00:26:45.360]And then you go from there.
[00:26:48.720]Okay.
[00:26:51.690]Okay, and then, so we've got this,
[00:26:54.120]we've got the sensory integration process.
[00:26:56.370]I sense something, something happens,
[00:26:58.890]I sense it and I produce a response to it.
[00:27:01.620]And that's a really important piece
[00:27:03.584]of the sensory integration process to look at.
[00:27:06.570]But at any of those stages, and I'm gonna go through,
[00:27:10.560]explain these words a bit more,
[00:27:12.000]but that at any of these stages there
[00:27:15.004]is the potential for things to go awry.
[00:27:21.630]And so neuro level responsivity, what's that?
[00:27:25.680]That's where we think sensory modulation happens.
[00:27:29.520]We think sensory modulation,
[00:27:31.680]if I'm what we have called historically,
[00:27:34.290]even though it's very deficit-based language,
[00:27:36.450]sensory over-responsive or sensory under responsive,
[00:27:39.810]we believe that's happening at a synaptic level
[00:27:43.170]that there isn't gating happening.
[00:27:45.570]Why am I emphasizing this in a talk like this?
[00:27:49.770]Because it's not a choice.
[00:27:52.440]You cannot choose to not have a
[00:27:59.824]exaggerated, not a great word, or muted synaptic response
[00:28:04.230]to a stimuli, right, it's, there's no, it's not optional.
[00:28:09.150]And then you've got this analysis
[00:28:11.070]of what's happening, which we might call discrimination,
[00:28:14.220]where you are discerning the qualities of the sensory event.
[00:28:18.510]That is actually anatomically distributed
[00:28:21.210]all the way through the body.
[00:28:23.040]We have this idea that it like happens here
[00:28:25.110]and here and they talk to each other a little bit,
[00:28:28.080]but actually everything we experience all the time
[00:28:31.020]is happening in the brain and it's anatomically distributed
[00:28:34.200]and we remember it in the whole body.
[00:28:38.430]That's where our prior experiences are.
[00:28:41.394]And that's another really important thing
[00:28:43.560]to realize when we're thinking about how this might impact
[00:28:46.620]an influence function.
[00:28:49.408](indistinct) those things are happening
[00:28:52.440]and then there's the response which we call the adaptive
[00:28:56.010]response in our sensory integration because that's
[00:28:59.160]what we want, sometimes the response isn't adaptive, right?
[00:29:02.850]But what we want is for you to be able to respond
[00:29:05.940]as you choose on your own terms in a way that is safe
[00:29:10.110]for you and everyone else.
[00:29:13.440]And so posture,
[00:29:15.600]my ability to be ready for movement and upright against
[00:29:20.160]gravity and still if necessary and organize my eyes
[00:29:24.630]and breathe and have pelvic floor tone,
[00:29:27.480]posture is a lot more than core strength.
[00:29:30.150]It's all related to,
[00:29:32.640]massively to the sensory integration process
[00:29:36.030]and reliant on it.
[00:29:37.230]And the same with my motor planning outputs.
[00:29:40.740]So I dunno if you,
[00:29:44.970]I used to live in Hong Kong and I knew a few different
[00:29:47.910]friends in the food and beverage industry,
[00:29:49.830]which was really fun 'cause you'd get to go to the
[00:29:51.750]new places and treat it as if
[00:29:53.670]you were more important than you were.
[00:29:55.890]And so I'd go to these amazing clubs
[00:29:58.230]and restaurants and they were always
[00:29:59.640]in the top floor of some skyscraper,
[00:30:01.920]but, and they always had a restroom that baffled me.
[00:30:06.840]And I'd always think about praxis at that point.
[00:30:09.570]Like I'd go up to the faucet, the sink and be like, huh,
[00:30:15.750]I might just wait for someone else
[00:30:17.130]to show me how to use this.
[00:30:18.900]Because I couldn't figure out what the adaptive response was
[00:30:22.500]here, what is this environment offering me?
[00:30:26.040]I knew cognitively water was somewhere, right?
[00:30:29.040]But I would, I would constantly be faced with these things.
[00:30:32.040]When we went to Japan, my son gave us the perfect example
[00:30:35.670]of this because the first restaurant we went to,
[00:30:38.970]I let him go to the restaurant by himself,
[00:30:40.590]he was nine, and he flooded the restaurant
[00:30:44.478]because Japanese toilets are really different.
[00:30:49.140]So knowing how to respond to novelty in our environment
[00:30:53.400]is a huge part as well, and we call that praxis.
[00:30:56.940]And novelty is present all
[00:30:59.124]the time everywhere by the way, so different water bottles,
[00:31:01.890]different writing implements,
[00:31:03.390]different seats to sit in, those sorts of things.
[00:31:06.390]Okay, let's talk about a person
[00:31:11.640]and let's see, I'm hoping this is really gonna
[00:31:14.850]help it feel meaningful for you all,
[00:31:17.400]and some of you probably know Henry.
[00:31:19.860]Or you've met several Henrys, I don't know,
[00:31:23.160]but Henry the Henry's class is doing this exercise.
[00:31:27.570]I dunno if any of you work in elementary schools or middle
[00:31:29.640]schools and have seen this exercise where we are learning,
[00:31:32.400]it's a social emotional exercise
[00:31:34.050]where we are teaching the kids a little bit
[00:31:35.940]about perspective taking and I love it, but whenever I,
[00:31:41.730]the school I'm supporting does this and I'm supporting a
[00:31:45.120]neuro divergent student because I think one of the biggest
[00:31:49.560]supports we can offer our neuro divergent students is to
[00:31:53.220]help other people perspective take about their experiences.
[00:31:56.640]And this is where again, that sensory piece is so important.
[00:31:59.730]So Henry what you see on the outside
[00:32:01.770]is Henry's non-speaking,
[00:32:03.570]historically we might have called him non-verbal.
[00:32:06.510]He's been learning to use an AAC device for a while.
[00:32:09.630]It hasn't really fit him, they're trying something else now.
[00:32:14.919]He's from a Vietnamese family,
[00:32:17.730]so he's got dark hair, brown eyes,
[00:32:21.000]but Henry also moves differently and doesn't always sit down
[00:32:24.420]when everyone's expected to sit down and sometimes
[00:32:26.580]just leaves the classroom, kind of paces a lot.
[00:32:30.690]He goes to physical education with the other kids
[00:32:33.150]but just like wanders around
[00:32:34.770]and they've decided he's not really interested.
[00:32:38.100]And sometimes he suddenly freezes
[00:32:41.100]when he's moving like halfway up the stairs
[00:32:45.062]or actually that's the biggest place that it happens
[00:32:49.087]and he just freezes and everyone's behind him
[00:32:50.400]and everyone's like, Henry, keep going up the stairs, right?
[00:32:54.144]Henry makes noises that are really unusual
[00:32:57.450]and boring of boringness,
[00:32:59.610]always has an adult with him, which is like a drag.
[00:33:05.010]That's what we see on the outside.
[00:33:07.680]But when we start to understand Henry in a sensory informed
[00:33:12.270]way, we start to see a very different picture.
[00:33:18.930]Henry goes to physical PE
[00:33:21.534]with the other students because he's really interested.
[00:33:26.850]But he wanders because he doesn't know how to produce that
[00:33:31.110]adaptive response, he doesn't know how to do the PE thing.
[00:33:34.800]He doesn't even really know how to keep his body still
[00:33:37.170]on a mat while the PE teacher explains it to him.
[00:33:42.450]But he understands everything everyone says,
[00:33:45.810]which has huge implications
[00:33:48.090]for how he's been treated all of his life.
[00:33:52.500]And so Henry has a really big brain-body disconnect.
[00:33:58.230]I want to do PE,
[00:34:00.540]I have no clue how to get this body to do PE.
[00:34:04.350]I even know what I want to do.
[00:34:06.030]I can even remember the sequence and the movements,
[00:34:10.050]but I'm just gonna wander around because I cannot get this
[00:34:13.830]body to do what I want it to, even the smallest thing.
[00:34:17.970]And sometimes when I really start
[00:34:18.854]to think about it, I freeze.
[00:34:23.910]Actually, Henry doesn't love singing ABCs.
[00:34:26.370]Henry actually loves watching piano YouTubes
[00:34:33.474]where you can see self playing pianos and then you can see
[00:34:37.530]the music, the sheet music, and he really loves that.
[00:34:43.080]I changed that line for something else
[00:34:45.104]and didn't change it back.
[00:34:47.340]Henry gets dysregulated in noisy places
[00:34:52.273]and has a lot to say, but just makes these noises, right?
[00:34:57.240]Let's learn a little bit more about Henry.
[00:35:00.990]So he's over-responsive to sound.
[00:35:02.304]At that synaptic neural level,
[00:35:06.210]every sound comes through like this.
[00:35:12.004]And that means deciding which sound
[00:35:13.200]is the most important sound in the environment
[00:35:15.990]is incredibly effortful and sometimes impossible because
[00:35:19.590]the voice of the teacher is as loud as the children
[00:35:22.080]whispering is as loud as the air con running
[00:35:24.390]in the background is as loud as the drilling outside.
[00:35:27.360]And everything is constantly vying for his attention
[00:35:31.170]and he's orienting to everything, everything has saliency.
[00:35:35.400]Do you remember I talked about saliency?
[00:35:37.890]So his that at his body,
[00:35:40.290]his nervous system is not supporting the like, oh there,
[00:35:44.460]right, that he you need to do in a classroom for example.
[00:35:50.040]So he, so focusing on just one thing is actually almost
[00:35:53.940]out of reach for him until we can help him a bit better.
[00:35:58.860]He's under responsive to his movement senses.
[00:36:01.410]That vestibular sense I talked about
[00:36:03.394]that tells you about gravity,
[00:36:05.310]tells you about where your head is
[00:36:06.540]in relation to the sidewalk,
[00:36:09.390]helps you organize your eyes, and his sense of how you know
[00:36:14.130]where your right heel is without looking at it
[00:36:16.200]his proprioceptive sense, he's under responsive to those.
[00:36:20.310]So he doesn't really have that experience of being
[00:36:22.920]in his body and that kind of
[00:36:28.230]increases this brain-body disconnect phenomenon
[00:36:32.647]that Henry has to live with.
[00:36:38.940]He also doesn't really sense those internal sensations.
[00:36:43.920]So one way of categorizing sensation
[00:36:46.680]would be like in interceptive sensations,
[00:36:49.050]which tell me about the internal state
[00:36:50.730]of my body and exterceptive sensations,
[00:36:53.640]which tell me about the world and the environment around me.
[00:36:56.340]And those in interceptive sensations tell you if you need
[00:37:00.600]to go to the restroom or if you've got butterflies
[00:37:03.780]in your tummy because you're nervous
[00:37:07.980]and they're really important because they can do things like
[00:37:10.470]hijack you when you get hangry.
[00:37:13.890]But if you don't know you are hungry
[00:37:16.140]and therefore hangry, you are just gonna seem irritable.
[00:37:19.530]And irritability is kind of like a,
[00:37:24.930]it's when a child comes to you with an owie and they've got
[00:37:27.030]a physical injury, irritability is kind of like that.
[00:37:29.820]It's kind of like a fever or something,
[00:37:31.530]it means oh this child needs some help, right?
[00:37:36.150]And so with Henry, you know,
[00:37:39.600]one of the things that's taken a really long time
[00:37:41.610]is for him to really be able to tune in
[00:37:43.230]and predict when he needs to use the restroom.
[00:37:46.050]'Cause he just isn't getting that information in a way
[00:37:48.810]that helpful at the moment.
[00:37:53.130]Okay, and then Henry's also got issues with posture.
[00:37:59.844]And I talk about this with more of that deficit language
[00:38:04.770]because my, here's my opinion on this, right?
[00:38:09.870]When we haven't attuned to our young people's
[00:38:13.080]needs early enough,
[00:38:15.150]we deprive them of the organizing motor experiences
[00:38:20.910]that will help bring posture online
[00:38:23.340]and help them develop motor mastery.
[00:38:26.370]And so I'm okay with saying Henry's posture is immature
[00:38:29.820]or he has postal disorder.
[00:38:31.980]'Cause I kind of think it's on us as his team 'cause we,
[00:38:34.830]we haven't figured out how to meet his needs yet in a way
[00:38:37.440]that works for his body and brain, does that make sense?
[00:38:40.620]And so, and Henry has underlying low muscle tone,
[00:38:44.970]which we believe you can't really change permanently.
[00:38:49.050]You have to constantly be doing conditioning.
[00:38:53.314]And that's not my excuse for myself, it's like a real thing,
[00:38:58.440]okay, but you have,
[00:38:59.340]so you have to constantly be doing conditioning
[00:39:01.110]to bring those muscles online.
[00:39:02.130]But when we can figure out what works
[00:39:03.630]for Henry Henry's posture should mature somewhat.
[00:39:08.130]Okay?
[00:39:11.280]And so that in fact that influences all
[00:39:13.950]of these pieces for him,
[00:39:16.650]some of the really big pieces that his postural differences
[00:39:20.730]influence are like his breathing.
[00:39:24.270]So that deep breath in and deep breath out that helps
[00:39:27.870]you recover from stress, it isn't really available to him.
[00:39:32.280]He tends to breathe from up here.
[00:39:35.160]And so his posture is negatively influencing his regulation
[00:39:39.840]at the moment.
[00:39:41.220]And also just think about what happens
[00:39:42.720]to your posture when you're dysregulated, right?
[00:39:47.940]If you are feeling a bit depressed and dejected,
[00:39:50.580]that's, yeah, that's one thing.
[00:39:52.440]But generally you don't have like a, you know,
[00:39:55.860]a dancer's posture or whatever
[00:39:57.484]when you're not feeling great.
[00:39:59.310]So there's this negative cycle there
[00:40:00.960]between regulation and postural challenges.
[00:40:05.430]And so that balance between sympathetic and parasympathetic,
[00:40:10.230]which is your rest and digest and brain has just
[00:40:16.980]stopped working fight flight systems, right?
[00:40:22.320]I had a different word I was gonna say, but that's fine.
[00:40:24.570]There isn't that balance coming as easily.
[00:40:28.020]And that's one reason why fight flight tends to dominate.
[00:40:32.160]These children aren't in a constant state
[00:40:34.020]of fight or flight.
[00:40:34.853]They're in a constant state of fight or flight readiness,
[00:40:38.490]you know, and we talk about them being on a hair trigger.
[00:40:41.850]We talk about like, there was no antecedent.
[00:40:45.270]I couldn't, there's no reason why this happened.
[00:40:49.020]There's tons of reasons.
[00:40:51.390]And they're walking such a fine line all the time
[00:40:55.290]because they don't get the recovery experiences their
[00:40:58.350]body needs naturally.
[00:41:00.570]And so that, again, that's why we start with regulation.
[00:41:04.080]If we want function, we have to start with regulation, okay?
[00:41:13.590]Yeah, and then so posture as well,
[00:41:15.360]sitting or standing still, right.
[00:41:20.666]And a lot of our posture, I mean, look after the pandemic,
[00:41:23.280]a lot of our students have postal issues, like they, it was,
[00:41:27.480]it was already bad.
[00:41:29.220]And now it's like, huge issue irrespective of neurotype.
[00:41:35.514]What are some of the strategies that we use
[00:41:38.550]to hide our postural challenges that might trick people?
[00:41:41.910]Does anyone know?
[00:41:45.120]Sometimes we use our ribs.
[00:41:47.580]I've seen a lot of children who rest their ribs on
[00:41:50.880]the tabletop, oh, some of the, and adults, no, not really.
[00:41:56.130]A few people over here were like, oh,
[00:41:57.360]I'm gonna sit up before she looks at me.
[00:42:00.974]Wrapping our legs around the chair, propping
[00:42:02.970]with our elbows, resting our head,
[00:42:05.940]all of those different pieces right now sitting,
[00:42:09.720]I expect you will know that sitting isn't really a natural
[00:42:13.110]position for humans.
[00:42:14.430]But as we've sort of over
[00:42:16.290]the millennia insisted on adopting this position,
[00:42:19.860]our body shape has changed and it's still
[00:42:22.290]not an efficient position, but we insist on doing it.
[00:42:26.610]But children shouldn't be terrible at sitting
[00:42:29.700]because we condition them into that most of the time.
[00:42:33.420]So when you see a child who can't sit in a chair without
[00:42:37.440]propping in some way or another or falling out of the chair,
[00:42:42.780]like why, there was no reason to fall out the chair.
[00:42:46.110]Well there probably was, yeah.
[00:42:48.750]Or tipping the chair back is the other one, right?
[00:42:53.820]Like that's another adaptive,
[00:42:55.590]that's actually an adaptive response,
[00:42:57.870]and what, so what we wanna start doing is going, huh,
[00:43:02.010]maybe there's something we can do here so that this child
[00:43:06.120]doesn't have to use all these strategies to sit and then
[00:43:10.290]they can use those resources for learning, woohoo, right?
[00:43:14.160]And we are gonna have standing desks
[00:43:15.750]in our classrooms and for homework,
[00:43:17.940]we're gonna be able to stand at the kitchen counter for
[00:43:19.980]homework and we're gonna have moving chairs and even reading
[00:43:23.820]in a hammock and all of those different things that we can
[00:43:26.910]do to support our children rather than demand that they
[00:43:31.230]maintain an upright posture and learn at the same time.
[00:43:35.370]We're gonna work on their posture and we're gonna help them
[00:43:38.160]learn without that drain on their batteries.
[00:43:42.780]Okay, so when we talk about Henry's learning profile,
[00:43:49.110]it's really confusing and it's confused child
[00:43:53.340]development teams for decades.
[00:43:55.364]Because I did tell you earlier that Henry cognitively
[00:43:59.040]is as capable as his peers.
[00:44:02.550]But how do we measure cognition?
[00:44:05.910]Especially like, think about the Bailey,
[00:44:07.830]if you've done the Bailey evaluation,
[00:44:10.170]how do we measure that child's intellectual capacities?
[00:44:15.720]A hundred percent through motor outputs,
[00:44:18.420]even where they look right, but that is a motor output.
[00:44:22.560]Organizing my eyes well enough to show interest
[00:44:25.260]in something is a sensory motor output.
[00:44:28.860]And so I am going to evaluate this child based on motor
[00:44:33.720]and decide what their cognitive capacity is based on motor.
[00:44:38.220]And that's why we started ascribing
[00:44:40.170]developmental ages, right?
[00:44:43.080]So there's the chronological age
[00:44:44.700]and the developmental age of the child.
[00:44:46.980]And I think what we are realizing more
[00:44:48.900]and more and more now is how mistaken we have been
[00:44:54.210]in relying on motor outputs
[00:44:56.790]to determine how capable a child is.
[00:45:00.330]And so the safest thing to do is to treat them actually
[00:45:03.570]at their cognitive age and read them age appropriate books,
[00:45:07.770]not developmentally appropriate books.
[00:45:09.277]And I can talk about this forever,
[00:45:11.130]so I'm gonna try not to do that.
[00:45:14.424]And so we're talking, you know, previously
[00:45:16.980]we talk about spiky profiles this,
[00:45:19.050]this developmental trajectories.
[00:45:20.790]We do know now that the autistic developmental
[00:45:23.040]trajectory is different.
[00:45:25.260]And so applying non-autistic developmental milestones
[00:45:29.700]and norms to our autistics, autistic population
[00:45:34.440]is actually mostly unhelpful.
[00:45:37.440]I think it helps us realize where we can provide supports
[00:45:41.400]and that's what it should be used for.
[00:45:43.350]But I don't think we should be imposing this kind
[00:45:45.720]of linear, you'll do this first and then you do this
[00:45:47.760]and we, and this fear that I still meet parents
[00:45:50.970]who are terrified that they're gonna miss
[00:45:54.870]the window for early intervention
[00:45:57.480]because brain plasticity stops at age six, it doesn't,
[00:46:03.180]your brain is plastic all the way through your life.
[00:46:06.690]You're particularly plastic, your brain is particularly
[00:46:15.420]malleable in the early years and in the teenage years,
[00:46:20.790]there's actually two windows of opportunity.
[00:46:22.590]We just haven't really figured out the adolescent one.
[00:46:25.440]But you know,
[00:46:26.460]when you hear these stories of adults rewiring their brains
[00:46:30.450]after stroke and injury and things like that,
[00:46:33.180]what is that an example of?
[00:46:35.100]Neuroplasticity, okay.
[00:46:37.260]When you learn a new phone number,
[00:46:39.750]what is that an example of?
[00:46:41.610]Neuroplasticity, okay,
[00:46:46.516]if I ever could learn the direction somewhere,
[00:46:48.810]that would be an example of neuroplasticity,
[00:46:50.760]but that's not available to me.
[00:46:54.600]And so, you know, this is a really just an important piece
[00:46:58.560]to think about as we're
[00:47:00.952]with supporting autistic individuals, is that yes,
[00:47:03.810]there's an asynchronous developmental profile here
[00:47:06.480]and it'd be and one of the things I sort of daydream
[00:47:09.720]about regularly is what if in the first six years
[00:47:13.050]of life with these children,
[00:47:15.660]we just helped them master their bodies and develop autonomy
[00:47:22.260]with their gross motor outputs and bring their posture
[00:47:27.090]online and learn to enjoy being in space
[00:47:30.564]and other people and learn that regulation, 'cause
[00:47:34.020]for the most part, the academics are gonna come later
[00:47:36.750]when you can do that work.
[00:47:38.730]But we sort of shoehorn them into academics first
[00:47:41.340]because that's, because of reasons, I don't know.
[00:47:46.980]Okay, so just one of my soap boxes,
[00:47:51.720]there are gonna be a few more, but something to think about.
[00:47:55.500]Oh, and you know what it makes me think about,
[00:47:56.757]and I forget his name now, I wonder if it's Henry,
[00:48:00.450]did you all see the new story about the young man about
[00:48:02.850]three weeks ago who became the youngest black professor
[00:48:05.370]at Cambridge University?
[00:48:07.740]Didn't speak until he was 11,
[00:48:11.250]was non-speaking until he was 11.
[00:48:13.980]And I would love to find out what his childhood was like.
[00:48:18.000]Like did he recover from 11 years of weird
[00:48:22.830]early intervention or did he get the right supports
[00:48:25.320]to be where he is now, but whatever he's where he is now?
[00:48:28.140]He's autistic and he's incredibly articulate.
[00:48:31.290]He's a brilliant thinker.
[00:48:32.760]He's the youngest black professor at Cambridge University.
[00:48:35.970]I think that's just an amazing story
[00:48:38.370]and it just makes me wonder you know
[00:48:42.960]what we need to do differently
[00:48:45.360]to have more stories like that.
[00:48:51.120]Okay, and so all of this to say that we've kind of
[00:48:55.214]got the idea of presuming competence a little bit awry.
[00:48:59.220]And I was really challenged with this
[00:49:02.704]when I started with our education events at Star Institute.
[00:49:06.270]We have a virtual summit
[00:49:08.310]for sensory health and autism every year.
[00:49:11.040]And I think at the first one we had
[00:49:15.480]Jake Reisman spoke and Jake uses a spelling board
[00:49:19.500]to communicate and he did
[00:49:22.174]the presentation with his facilitator and they shared the
[00:49:26.850]story of a young man who had one of Jake's contemporaries
[00:49:33.540]who hadn't found his means
[00:49:35.330]of communication until he was a young adult.
[00:49:38.970]And so he'd gone through like 20 years
[00:49:41.280]and he tells the story of
[00:49:42.750]20 years of someone telling me to say, "Cuh" for cow.
[00:49:48.390]And he says it like that and you're like, oh, sorry.
[00:49:51.540]And then the other thing he says is,
[00:49:53.100]I used to ask for Barney all the time.
[00:49:56.910]I'd ask for Barney on the iPad,
[00:49:59.190]so I'd get the iPad, I'd open YouTube,
[00:50:02.760]I'd point at Barney and everyone would let me watch Barney
[00:50:06.300]and they'd give me Barney toys.
[00:50:08.430]And then when he became
[00:50:10.080]someone who could communicate articulately,
[00:50:12.000]he's like, I hate Barney.
[00:50:13.980]Stop giving me Barney, I am 20.
[00:50:18.510]I had a complete identity crisis.
[00:50:22.470]Like you were asking for Barney,
[00:50:23.730]like of course your team gave you Barney,
[00:50:25.650]but you didn't want Barney.
[00:50:26.670]What?
[00:50:28.470]Like, that was scary to me
[00:50:29.970]as a practitioner, like following,
[00:50:32.430]how do you follow the child's lead if their body isn't doing
[00:50:35.160]what their brain wants?
[00:50:37.770]Well first of all, you presume competence.
[00:50:39.690]And that doesn't just mean
[00:50:42.404]Aw, I really believe that you can learn,
[00:50:44.414]which is kind of what I thought it was.
[00:50:46.890]It means, I believe you're competent
[00:50:49.230]in an age appropriate way, I believe you're a peer,
[00:50:52.410]I believe you're interesting and it's my job to help you
[00:50:56.520]express that rather than just like a sweet little
[00:51:00.330]kind of patronizing infantilizing relationship.
[00:51:05.190]So the safest approach
[00:51:08.584]is to presume age appropriate competence.
[00:51:13.530]And then the biggest priority is to help this individual
[00:51:17.580]bridge that brain-body disconnect,
[00:51:21.090]gain autonomy of their body and communicate
[00:51:25.860]by whatever means, and for many of my teachers now,
[00:51:31.920]they're only my teachers because
[00:51:33.600]they were given alternative or augmentative communication
[00:51:37.110]options or spelling boards or these other things.
[00:51:41.820]So communication and presuming competence
[00:51:45.120]becoming incredibly important.
[00:51:47.610]And then the idea of supporting most motor mastery,
[00:51:54.720]which comes back to a core principle of our sensory
[00:51:58.140]integration, which is the self-organized child.
[00:52:01.950]And the self-organized child does things on their own terms
[00:52:05.784]because they want to and because they get it.
[00:52:09.690]And so when we start thinking this way,
[00:52:11.400]we are no longer talking
[00:52:12.840]about non-preferred activities because there aren't any,
[00:52:17.310]because that child's a classroom citizen, right?
[00:52:20.550]Look, okay, yeah, I don't like doing my taxes.
[00:52:23.460]I mostly sit down and do them because I'd like
[00:52:26.100]to stay married to my husband.
[00:52:28.080]So that relationship drives me in the non-preferred
[00:52:30.750]activity, not the promise of something, right?
[00:52:34.560]And it's that same sort of principle,
[00:52:36.330]like I want you to be able to organize around the goals.
[00:52:40.920]I want you to become a lifelong learner,
[00:52:43.770]not just someone who goes through the motions, right?
[00:52:46.860]I want autonomy for you, I want self-determination.
[00:52:50.220]Okay?
[00:52:52.050]And so for Henry with this dyspraxia that looks different,
[00:52:57.630]we've started talking about developmental motor
[00:53:03.330]apraxia or motor apraxia in autism,
[00:53:06.150]it's kind of a new, and it's been around forever.
[00:53:11.370]One of the main researchers who's looked
[00:53:13.050]into this is called Elizabeth Torres.
[00:53:16.560]You can also find work on this by Dana Johnson,
[00:53:20.130]who's an OT and has done some lovely webinars.
[00:53:23.730]But this idea of the brain-body disconnect.
[00:53:26.070]So you've got these output signals
[00:53:29.760]that are telling our body what to do
[00:53:33.030]and then that creates sensory data in and of itself.
[00:53:36.750]Movement creates sensory data.
[00:53:39.450]One of the big things that we think is happening in motor
[00:53:41.970]apraxia is that the feedback data isn't making it
[00:53:47.828]to the parts of the brain, it needs to,
[00:53:49.710]and actually not because of the safety pin being open,
[00:53:52.830]but because there's too much other data,
[00:53:55.830]so that this individual's not getting useful information
[00:54:00.630]to activate their auto safe,
[00:54:03.000]to learn how to move their body independently.
[00:54:07.920]It's a very hard thing to make relatable,
[00:54:11.010]but it's such, it has got tremendous implications
[00:54:14.034]for all the work that we do.
[00:54:17.250]And one of the things that happens when I've got this kind
[00:54:21.300]of motor apraxia that Henry has
[00:54:25.104]is that my movements are not intentional.
[00:54:29.370]The majority of my movements are not intentional.
[00:54:33.030]And so sometimes what happens is a motor loop develops,
[00:54:38.640]like asking for Barney,
[00:54:40.110]which seems like a really sophisticated thing
[00:54:43.020]to be able to do and not be intentional, right?
[00:54:46.590]Like this is what caused my first identity crisis, right?
[00:54:49.800]I'm in the middle of another one now, just by the way.
[00:54:52.740]Okay and so we've got these like motor patterns
[00:54:55.620]that become over practiced,
[00:54:57.953]over practiced, over practiced, over practiced,
[00:55:01.980]and then something happens in the environment.
[00:55:06.570]Like we see a door out the corner of our eye maybe.
[00:55:10.530]And that imperative stimulus activates the motor loop,
[00:55:14.820]which is mid-brain down and not intentional
[00:55:19.290]and it hijacks the body, and so the body goes
[00:55:23.696]and does the thing that it's, and then we, what do we do?
[00:55:27.570]We go, don't go through the door, don't go through the door,
[00:55:33.360]don't go through the door and we reinforce the motor loop.
[00:55:37.680]No door, no door, no door.
[00:55:39.720]Well what are we doing?
[00:55:40.620]We're causing more stimuli to fire and we are creating
[00:55:44.850]a multi-sensory experience.
[00:55:46.620]And that loop's gonna become even more embedded.
[00:55:49.740]And then what do we do?
[00:55:50.880]Listen, we are gonna go past the door in a minute.
[00:55:53.610]Don't go through the door.
[00:55:55.020]We start priming the individual for the motor loop
[00:55:59.370]that's about to come all at this body sensory level.
[00:56:03.630]And instead if we can go, Hey,
[00:56:05.610]can you carry this over to Jamie at the back
[00:56:09.030]and give you a functional task to do from the front
[00:56:11.520]of the room to the back of the room?
[00:56:13.934]We tend to see that
[00:56:15.690]the running through the door stops, this motor loop stops.
[00:56:19.800]If we can bring you, get you cognitively engaged,
[00:56:22.560]get that brain-body connection going
[00:56:25.668]and give you something functional to do.
[00:56:27.150]And it's amazing.
[00:56:28.140]And I have so many questions 'cause I really am wondering
[00:56:31.170]how much this explains eloping behaviors.
[00:56:33.930]Like if they're just really not running away
[00:56:36.390]as much as motor loops.
[00:56:38.250]And that's got massive implications
[00:56:39.874]for how we're gonna support these people.
[00:56:45.180]One example of this for me was like,
[00:56:47.040]I remember a few years ago, decide I was missing a lot
[00:56:51.270]of phone calls in the busyness of living in Hong Kong.
[00:56:55.260]And so I changed my phone to have that flashing light
[00:56:58.230]when I got a message.
[00:57:00.300]And what happened was, after a while,
[00:57:03.510]whenever I saw a flashing light out the corner of my eye,
[00:57:06.960]my body would really want to check my phone for messages
[00:57:11.820]and I would know I didn't need to check my phone,
[00:57:15.510]but if I was tired or not really thinking,
[00:57:17.670]like it would just come out and I'd look at it and I'd be
[00:57:19.500]like, I know I didn't get a, why am I doing this?
[00:57:22.470]So we all sort of experienced this.
[00:57:24.360]I think it's not just me.
[00:57:26.550]We all experienced this a little bit.
[00:57:28.050]And you can start looking for examples of it.
[00:57:30.570]As we get older, we experienced it a bit more, right?
[00:57:33.090]Like, oh, I didn't mean to come in this room,
[00:57:34.980]I was supposed to be going somewhere else, darn it, old age.
[00:57:39.360]Okay, but this is,
[00:57:40.260]that helps you understand some of these pieces, okay?
[00:57:46.650]And so sometimes we reinforce them
[00:57:48.494]with emotion and other sensations.
[00:57:52.939]For Henry, one of them is leaving the room
[00:57:54.270]when he sees the door.
[00:57:55.860]And the other things that he does is
[00:57:57.990]he gets cause and effect toys and holds them
[00:58:00.960]to his ear and paces up and down, you know?
[00:58:03.360]And so instead of like, he wants the cause and effect to,
[00:58:07.020]I give him the cause and effect to I'm now like,
[00:58:09.840]do you really want it Henry,
[00:58:11.670]or is there something else you'd
[00:58:12.900]rather do that I can help you do?
[00:58:17.130]And the other thing that he does that we think is a motor
[00:58:19.260]loop is he opens and shuts the car door,
[00:58:21.840]and he has to do it like eight times,
[00:58:23.250]and so when we figured out communication for him,
[00:58:26.624]I can't wait for him to tell me.
[00:58:29.070]And in the meantime I'm gonna try and problem solve with him
[00:58:32.790]and just introduce the idea to him even that
[00:58:35.490]maybe you don't wanna be doing this right now.
[00:58:37.410]And it's more like your body's kind of doing something
[00:58:40.560]that, you know, maybe we need to deal with.
[00:58:43.980]And then there's this other thing called disinhibition,
[00:58:46.770]which is another really important piece of this picture.
[00:58:52.020]And so these are impulsive movements and again,
[00:58:57.420]they hijack the body and they can become motor loops
[00:59:01.320]very easily, especially if they're reinforced.
[00:59:03.780]Like, but what happens with disinhibited movements
[00:59:07.830]is the less regulated you are,
[00:59:11.730]the less inhibition you have available to you.
[00:59:15.030]Yes, I think I said that right.
[00:59:17.760]And so when we're dysregulated,
[00:59:20.130]we might do things that we don't want to,
[00:59:23.520]they're not necessarily loops, but
[00:59:25.500]I have an amazing eight year old girl that I work with.
[00:59:30.570]And when she gets dysregulated,
[00:59:33.030]and that fight flight response is activated, she lashes out.
[00:59:38.310]But she'll even say to you, I don't want to be doing this.
[00:59:44.340]But how has she been supported do you think historically?
[00:59:48.780]And so what happened when she first met me was I met this
[00:59:51.600]young lady who basically told me she was a problem.
[00:59:56.700]I should probably expect that she was gonna be a problem.
[00:59:58.920]And then when was doing the problematic
[01:00:04.350]behavior, was saying things like, stop that to herself.
[01:00:10.230]Stop hitting, stop that, duh,
[01:00:13.024]and you know, all and then some shaming language as well.
[01:00:16.920]And I was just horrified that her internal image of herself
[01:00:19.590]was a bad kid, and now we've introduced this idea of like,
[01:00:23.773]I think your hands are doing something you don't want them
[01:00:25.770]to do, and I remember when it clicked
[01:00:28.680]and this, she looked relieved, this like,
[01:00:32.940]she just kind of sighed like I think, I think you're right.
[01:00:38.820]And the difference that made in her sense
[01:00:40.680]of self was immense and continues to be really important.
[01:00:49.230]That's enough of that, and so, you know,
[01:00:51.314]when we're supporting any of these children
[01:00:54.600]and looking at sensory integration differences,
[01:00:58.140]we are really thinking about sense of self.
[01:01:01.770]We're thinking about resilience, autonomy,
[01:01:04.440]and I keep talking about motor mastery
[01:01:07.020]because it's so different to pencil grip, right?
[01:01:13.080]And like,
[01:01:13.913]so stop worrying about pencil grip and let's start thinking
[01:01:17.520]about I can do things with my body that I want to do.
[01:01:21.210]And that's really important in human development.
[01:01:23.670]And it starts for many children with something a little bit
[01:01:27.090]like pulling glasses off the caregiver's face, right?
[01:01:31.020]And you go, oh, that's, I haven't seen you do that before.
[01:01:34.050]That's funny.
[01:01:35.970]Don't do that again.
[01:01:36.840]And then you put them back on and
[01:01:38.220]then the baby, what do they do babe, pull them off again.
[01:01:41.130]Right, and you, you're like, okay, all right.
[01:01:43.020]And then put them on again and then, you know you.
[01:01:44.874]And but one of the things this baby is experiencing
[01:01:48.780]in this like slightly what we,
[01:01:51.150]what we might perceive as mischievous activity is
[01:01:55.170]I did that, I did it again,
[01:01:58.800]I did it again, and now they're making funny noises
[01:02:01.714]and going red in the face.
[01:02:03.900]Look at all the things I can do!
[01:02:06.090]But if our children are not experiencing basic
[01:02:08.910]motor cause and effect,
[01:02:11.640]then they're not really learning that sense of agency
[01:02:13.594]and self that's gonna help them be self-organized
[01:02:16.890]at home and in community spaces,
[01:02:19.144]that's gonna help them step around their sibling
[01:02:20.310]at the top of the stairs, right?
[01:02:22.860]That's one of the things that happened at Star recently was
[01:02:24.960]that these parents were like, oh my gosh,
[01:02:29.100]our child just stepped around their sibling.
[01:02:31.800]They've never done that before.
[01:02:33.960]I was like, that's a great outcome measure.
[01:02:36.030]It was fantastic 'cause also what it showed them was
[01:02:39.330]they weren't meaning to hurt their sibling all those other
[01:02:42.300]times, but they didn't have the motor mastery not to.
[01:02:47.460]Okay, I'm gonna just, I,
[01:02:51.360]so this is just a way of thinking about how we are gonna
[01:02:53.760]help our kids with that brain-body disconnect, okay?
[01:02:56.104]And I feel like it's a whole different,
[01:02:59.550]that's a whole different webinar.
[01:03:00.690]So it's there if you want to explore it.
[01:03:04.800]And so like for Henry, communication,
[01:03:07.350]sensory motor mastery, and then Henry's also need
[01:03:10.050]help with feeding.
[01:03:11.610]And what we want is Henry to be able to have a repertoire
[01:03:14.820]of food that will give him enough calories
[01:03:16.980]and nutrition and to be able to tell us what's yucky.
[01:03:21.180]We don't just want him to eat what's put in front of him.
[01:03:23.490]Again, we want that mastery and agency and autonomy
[01:03:26.580]that's gonna help him be a well adult in the long term.
[01:03:32.490]And so we use high cognitive input,
[01:03:34.740]we treat him age appropriately, air sensory integration,
[01:03:39.090]and or motor coaching, which is what Dana Johnson does.
[01:03:43.590]And then a feeding approach that is respectful.
[01:03:47.130]And so things to remember, what does this mean when we look
[01:03:50.280]at Henry's body, we do not know what he is experiencing.
[01:03:54.540]We don't even know what he wants unless we really spend time
[01:03:57.540]investigating, and so we definitely
[01:04:00.360]don't know when he's listening or not listening,
[01:04:02.880]but we should presume he's listening all the time.
[01:04:06.270]And one of the things with Henry is that if I demand
[01:04:09.450]he sits still and does whole body listening,
[01:04:12.240]his actual listening is gonna be completely unavailable
[01:04:15.030]because all he's doing is looking like he's listening.
[01:04:19.994]I have this experience more often than I think most
[01:04:21.960]adults do, and that's one of the ways
[01:04:23.490]that I am autistic and that's one of the ways
[01:04:25.620]that my autism shows up is so like, if I really disagree
[01:04:28.530]with someone, I am no good at pretending.
[01:04:32.670]And so I'll be in a meeting with someone and they're talking
[01:04:34.950]about something that isn't my favorite
[01:04:37.674]or whatever, or I disagree with and all I'm doing is trying
[01:04:41.550]to look neutral and I have no idea what they said.
[01:04:46.740]No clue, just something like, you know,
[01:04:50.280]trip that switch and then like all I'm doing is,
[01:04:53.310]and it's like that thing
[01:04:54.240]of pretending to be interested after lunch, right?
[01:04:56.880]Or listening, letting your eyes close and listen, right?
[01:05:01.384]And so listening doesn't have a look, it's an incredibly
[01:05:04.710]important principle for supporting all of our children.
[01:05:07.830]And that's also why we don't insist
[01:05:09.630]on eye contact for our children too,
[01:05:11.670]because there's that level of effort that eye contact takes.
[01:05:15.090]So we've got a tiny bit of time.
[01:05:16.470]So what I'd like you to do is turn
[01:05:19.133]to the person next to you.
[01:05:21.810]And some of you don't have a partner, but yeah, no,
[01:05:24.060]I am asking you to do this, like I am literally ask,
[01:05:26.670]I'm not gonna just pretend that you are pretending to do it.
[01:05:29.490]Okay?
[01:05:30.323]So turn to each other and I want you to sustain eye contact
[01:05:34.980]while you tell this person how to get to work
[01:05:40.770]from your house, you don't have
[01:05:42.330]to give away personal information,
[01:05:44.040]but just be like, okay, you're gonna come out
[01:05:45.510]the door, you're gonna turn left, you're gonna do this,
[01:05:47.374]you're gonna this, you're gonna sustain eye contact
[01:05:50.104]for the entire set of directions.
[01:05:53.070]Go.
[01:05:54.815](people chattering indistinctly)
[01:06:15.964]Okay thank you.
[01:06:25.054]There is no chart, we need them.
[01:06:27.840]Yeah, I'll try and ask that, but yeah.
[01:06:31.564]Okay, we're still talking.
[01:06:35.724]Okay, who struggled to remember the directions.
[01:06:42.030]Right?
[01:06:44.077]Even though you like do it every day.
[01:06:45.780]Who went a little bit red in the face?
[01:06:49.380]Few of you, cause I saw you.
[01:06:52.230]Who wanted to punch me?
[01:06:54.708]Yeah, right? (audience chuckling)
[01:06:57.180]Who refused to do it?
[01:07:00.000]Oh, non-compliant, okay.
[01:07:03.504]But it's kinda invasive, it's an asshole thing to do.
[01:07:07.980]Sorry, beep.
[01:07:10.110]But I'm doing it 'cause I want you to feel in your body
[01:07:14.250]what does to your state regulation when sensation
[01:07:20.010]and socio-sensory information are imposed on you.
[01:07:25.260]And all your resources went to everything except
[01:07:29.934]for giving the correct directions or whatever, right?
[01:07:33.690]So I just really want you to remember that
[01:07:37.470]and how that felt, okay?
[01:07:41.100]We do have more slides that I hope you really like reading
[01:07:44.280]in your own time.
[01:07:47.250]One of the things that I was gonna emphasize was,
[01:07:51.570]oh that, sorry.
[01:07:52.403]You need the checkout number for AOTA.
[01:07:54.390]One of the things that I was gonna emphasize was that
[01:07:56.760]in these exchanges, like kind of like what you just did,
[01:08:00.210]but hopefully better in your day-to-day exchanges
[01:08:04.914]are socio-sensory and that the family occupations,
[01:08:08.790]the things you do all day every day are socio-sensory
[01:08:13.890]and they are building your child's sense of self.
[01:08:16.560]They are shaping the architecture
[01:08:18.210]of the brain, and even between adult to adult,
[01:08:21.900]those socio-sensory exchanges
[01:08:26.310]resonate, you can map them on the brain,
[01:08:30.084]the same parts of the brain fire in a diad
[01:08:33.180]when you're talking to each other.
[01:08:35.790]And so one of the main things you wanna do when you're
[01:08:38.460]supporting your child at home in the community is making
[01:08:41.610]sure they're regulated enough that all
[01:08:44.670]the exchanges that happen all the time, every day in
[01:08:48.120]the store, in the car, diaper change, adolescents, I dunno,
[01:08:52.440]driving them to the, to the theater, whatever
[01:08:57.254]you want them to be organizing.
[01:09:01.680]You want them to be
[01:09:05.010]building this database for the person you're helping,
[01:09:08.730]to become authentically who they want
[01:09:11.214]to be in the world, to become their favorite self.
[01:09:15.054]And there are, there are quite a few sort
[01:09:17.430]of bits of like, try this, try this, try this
[01:09:19.800]on those slides that I just skipped over, but, you know,
[01:09:23.820]I think what, you know, one of the main things to think
[01:09:26.550]about with anyone with sensory integration differences
[01:09:29.820]is how can I make the environment as supportive
[01:09:32.640]as possible to keep this individual regulated?
[01:09:36.690]And how can I help them master their motor outputs
[01:09:40.050]so they experience agency?
[01:09:42.665]And then they can become their favorite selves in the world
[01:09:46.511]and be in the world because they get it
[01:09:49.110]and because they want to and not because they have to.
[01:09:51.993]Does that make sense?
[01:09:54.960]I hope that was helpful.
[01:09:56.970]I'm gonna see you all in a minute.
[01:09:59.550](audience applauding)
[01:10:02.128]We did have one question, which was
[01:10:05.370]where's the chart for autistic developmental milestones?
[01:10:09.540]There isn't one because if you've met one person,
[01:10:13.200]one autistic person you've met, guess what?
[01:10:14.850]One autistic person.
[01:10:16.230]And also because the research hasn't done it,
[01:10:19.170]and we do actually need that research into autistic
[01:10:22.920]populations instead of just imposing non-autistic norms
[01:10:27.690]into different neurotypes.
[01:10:29.700]So I just wanted to answer that question.
[01:10:30.990]But thank you and I'll see you in a minute.
[01:10:33.762](audience applauding)

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Sensory Processing and Support for Home and Community Settings

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