TRANSCRIPT Ð Hmmm, it looks like autism to me - Understanding the similarities between the profiles of learners with autism and learners with sensory losses Ð 2/26/24

>>Julie: My name's Julie Maier and I'm the project coordinator for California DeafBlind Services. I just want to say, first of all, what an honor it is to present at one of the Texas Coffee Hours because I have attended many, many Coffee Hours on a variety of topics and I think this is just such an incredible resource. And I have to say I'm somewhat humbled by how many people are attending. So I'm thinking that means that this is a topic of high interest to people. What I'd like to start with and let you know is that what my background is. So I'm an educator. I am not a psychologist. I'm not a medical doctor. I'm not someone that gives a medical diagnosis of autism. And my educational expertise and background is in the area of extensive support needs or students that have quite significant disabilities. And so the individuals from adults to very young children that I've had the opportunity to work with, prior to coming to the California DeafBlind Services, were students who were -- if they were Deafblind they also had additional disabilities. So just wanted to give you that kind of disclaimer, all right? And I'm also curious, if you could put in the chat -- I appreciated seeing where everyone is from. But I'm curious how you would rate yourself in the area of your knowledge of autism and maybe autism and visual impairments or autism and DeafBlindness. So any combination of autism or autism and another disability. Do you feel like you're an expert in the area? Do you feel like you're still learning or is this all pretty new to you? So I have a sense. Still learning. Still learning. Aren't we all? I'm putting myself in the same boat. Still learning. Definitely still learning. Hi, Hillary. Still learning. Great. Okay. That's good. Then I think this is good. Well, let me get my slide show started first. You don't want to just look at my face all day -- or all hour. Don't worry. It's not all day. I'm going to make sure I'm sharing -- wait a minute. Okay. Share. Why didn't it allow me to share computer? Let me make sure that's happening. Thank you, everyone. Share computer sound. Okay. Cool. All right. Now I'm going to push "present." I'm seeing a black screen. My computer is kind of slow sometimes at San Francisco State. Tell me if you can not see that, Kaycee. If I don't hear from you, I'm assuming we can. So here we are. I've been lucky enough to have been asked to present on this topic at several webinars and also at a few conferences. And as I said earlier, I'm just someone that has familiarity and knowledge in kind of both areas of DeafBlindness but also autism. At San Francisco State I taught some courses to teachers that were in the teacher training program on just understanding different theories about the autistic mind and children with autism, some instructional strategies. Plus I have worked with several children and youth who have autism. And this really came about through a discussion I was having with my former colleague and good friend, Maurice Belote, who many of you may know. Way back when, like ten years ago now, he and I were talking about how often we were hearing from either teachers or parents about could my child, who is Deafblind or has CHARGE syndrome, could they also have autism. Or teachers saying -- when we were going out and providing technical assistance -- look at this kid. That looks like autism to me. So we decided that we wanted to share our thoughts about it and you'll be sent this article. And I'll show you how we set it up. We wrote a little bit about autism and DeafBlindness but then what there are for several pages is just a chart. And the chart talks about what a particular feature of autism is. What it might look like in a child who has autism. And then why a person who is DeafBlindness might also behave in that way. And I think a lot of this is also very relevant to individuals with vision loss as well. So that's the article. And so that's where we're going to go. I'm going to focus in on those behaviors that are characteristic of autism. And then we'll talk about why you might see that behavior in someone who is Deafblind or someone who has vision loss. And then by understanding the explanation, maybe give some more consideration to whether or not this person is just Deafblind or blind/low vision, or if they actually have autism as well. On this slide there's an image of a map of a supermarket and it shows the path that someone's taking through the produce section past the seafood and the meat, then the dairy section. Finally, stopping at the spirits and wine. And then going to checkout and exiting. And that's to show that -- and as this quote so nicely says: All of our life is but a mass of habits. And there's a lot of things that all of us do that are very routine. And that are very kind of -- we do them in particular ways and we can be rather inflexible about them. We don't like it when things don't go the way we expect. That's just to point out that for all of us we rely on some structure, some routine, some predictability in our lives to make the other parts of our life more enjoyable. If we were always having to problem solve and figure out new situations and orient to new situations all the time, life would be pretty chaotic and stressful. So that's just to point out that we should be remembering that when we think about individuals who are on the spectrum and individuals who have sensory losses. Because, really, they're experiencing the world in a very uniquely different way than we are and so some of the things that they rely on, some of these routines, these structures, this rigidity that we may see in types of behaviors actually serves a really important adaptive purpose. And I like to start out this presentation with just reminding people that I fully appreciate, as educators out there and maybe as family members or care providers, that supporting, teaching, providing intervention for individuals who have autism or DeafBlindness can be sometimes difficult and can be very puzzling to figure out what's the right thing to do. But I think that's a good thing and for me, that's the thing that's kept me in the field. And maybe that's true for some of you. The other thing that I think is important is -- because we're going to be talking about labels today -- is to remember that diagnoses and labels shouldn't define a child. I think they're really useful in providing us with guidance about what might be appropriate interventions or assessment approaches or programmatic planning. But it should never be labeling and having a child be just this thing. Empathy and perspective taking I found is essential to understanding these individuals. And I think the best question we could be asking when we see someone behaving in a way or reacting in some way or doing something that is unexpected or we don't understand is to actually stop and take a minute to be empathetic and say I wonder how the world right now feels to them. Or appears to them. What sensory information are they receiving that's causing them to behave, respond, interact in this way. And then the other things I like to open up with is just a reminder from a very important person in the field of DeafBlindness, and I think this really is something that we need to keep in mind always. It really applies to kids with all different types of support needs, I think, but especially individuals who have multiple sensory issues. Jan van Dijk, who a lot of people in Texas know well and have spent a lot of time learning from, wrote in 2001 that the multi-sensory impaired person is a unique human being with the unique line of development and who is more dependent on the professional's willingness to accept that and act accordingly than any other group of disabled persons. So that's Jan's opinion. I tend to agree with it completely. And because I think it really focuses on that as professionals it's our responsibility to recognize that we can't just fit these children or youth into a particular box or program. Even if we find a program that we think is really going to meet their needs well, we are still going to have to accommodate and individualize in some ways. And we really have to be ready to understand that their experience, sensory experience of the world is very different than ours. And so sometimes the best way to learn about what they need is to really be careful observers, spend time getting to know them. If possible, have them explain how they're experiencing the world and what they need. Okay. So now we're going to dig into some definitions. And, again, since you said you're out there as still learners. Nobody said they were experts. Let's quickly go over some definitions of autism and DeafBlindness. So the key thing to understand about autism is that it's something the individual lives with their whole life. And it's present in very early childhood. Perhaps, you know -- typically appears then. The born is born autistic. And it has a really big impact on how the person engages socially, how they use language, both verbal and non-verbal language, and the relationships they form. And a lot of self-regulation in terms of both their reactions to things and also their inhibitions. And there's certain behaviors that define autism. Even though it's a spectrum condition -- and we'll look at that in a second. People with autism are not disordered. The way that their brains work is not deficient, it's different. And that's where the term neurodiversity comes from is the idea that there are different ways of thinking, behaving, feeling and reacting in the world than a typical person. Especially a typical sighted and hearing person. So and the reason that it's important to think about these different set of behaviors that define autism is because oftentimes those particular behaviors are seen by people with other types of sensory loss and people then put this label of autism on it. So these -- on this slide there's a chart that shows six boxes and shows some of the key diagnostic features that show up both in the individual with disabilities education act definition as well as partially in the medical definition. So key things are the delays that you see in both their communication and language use and social interactions. Seeing restricted areas of interest in things. So not as expansive and flexible as a neurotypical person. Very stereotyped, repetitive movements. A lot of difficulty to adjusting in changes to environment or activities. Either refusing to change, getting very, very upset about changes, shutting down and not wanting then to participate. And this is an area that gets a lot of attention in terms of the literature and the interventions with autism. A lot of it has to do with trying to increase the individual's flexibility and adaptability that way. There's really heightened responses to sensory situations. Either you can see very diminished responses to very loud noises or very chaotic situations. Or else a very heightened one. And then difficulties with executive functioning. And executive functioning is something, you know, that changes throughout our lives and we develop more and more skills as we get older. But it is also -- it's the part of the brain that really kind of controls how we are able to make decisions, plan a response, solve a problem. Gauge, like self-evaluate, gauge how an interaction might be going to get ourselves started on a project and then complete it. And those are areas, again, where a person with autism has quite a bit of difficulty. Now all of these areas are not set in stone. So there's going to be a wide variety across different individuals that have autism, but also there's a lot of practices and interventions and environmental supports that can be put in place to help an individual who is autistic. Be able to function in our neurotypical world, in the world that the rest of us are going through without, you know, too much difficulty. Overall. I mean, I know we all face different difficulties but a lot of these structures, interventions, environmental supports can really help them to be able to participate in a world that, to them, doesn't really kind of make a whole lot of sense a lot of time. The next few slides are pretty packed with content. This is all in the article too so I'm not going to go too deeply into this. Just to know that there was a change in the DSM -- that's the diagnostic manual that has the medical criteria for autism. In the DSM-V. And this occurred in 2014. It hadn't occurred for a very long time. And it changed some things in terms of what features had to be met. And there's two areas. One has to do with social and communication skills and interactions. And you have to meet all of those areas. So you definitely have to show issues with being able to carry on social interactions and to use non-verbal communication that way and to develop relationships. So that kind of isolate feature or picture we have of individuals with autism. Although I have a lot of thoughts on that too, whether they do want to isolate or if they just interact with the world and people in different ways. And the secondary criteria, they need to meet at least two of those. That has more to do with the repetitive behaviors and restricted interest and those fixations and also sensory responses. The paying attention to the heightened or reduced reaction to sensory responses is actually new. That was not in the DSM-IV. That was something added to the DSM-V. Additional considerations is autism does have to be present and show up early in a child's life. So it used to be you had to be diagnosed before 3. Now diagnoses come later because you might not see some of those, especially the social. These behaviors. You might not see these being such a big issue for very young kids until they enter the school system or preschool where all of a sudden there's more social demands on them. So the other thing that they do is they look at now different levels of support. Before there used to be different types or names like autism and Asperger's syndrome, ret syndrome. Now there's an all-encompassing Autism Spectrum Disorder. You have to be certain that the disturbances, the things that they're seeing, couldn't be explained by some other intellectual disability or global developmental delay. Now, DeafBlindness, as many of you know, if you've been coming to the Coffee Hours, I'm assuming you're very familiar that DeafBlindness is also a spectrum disability. And it has to do with having both vision and hearing issues that really significantly limit the person's ability to gather information from the environment and also interact with people in those environments. And, again, this typically leads to delays, especially if a child's born with these vision and hearing issues. But delays in multiple areas. Communication and language, social skills, mobility. But it doesn't need to limit their potential with, again, good interventions, good supports. But the thing that's important to recognize is that because of this combination of vision and hearing issues you might see those delays in early language and communication and in social skills and in the ways that a child might be acting. And we'll talk more about why that might occur. So that's why I do think we have to be careful about, when kids are very young, also adding that label of autism. Again, wide spectrum. The key thing that's common -- and I have this in bold here on this slide -- is that what all individuals who are Deafblind struggle with is acquiring information. The same information that sighted and hearing people have. And that's important because that's how we make sense of the world. The world is set up for neurotypical sighted and hearing people. So we can go through the world with much less effort, much less struggle. Sighted, hearing, neurotypical people. For people who are neurodiverse, have autism or some sort of sensory loss it's not as easy to gather that information. And then what the key thing you have to understand with DeafBlindness -- and this is also in the article we talk about at the end -- is what you have to determine is what level of available hearing or vision they might have. There might be ways that you can provide assistive technology or supports. And if you can find a way to help them get that information, then that might be a good way for them to learn some of the things that they might have been struggling with that might be the reason that you're seeing them behave in a way that you think looks autistic. Recently, because a couple of different groups have been asking me to also think about vision, I've kind of been diving into this a little bit and looking at what the connection is between vision and autism. And what's interesting is not only that they're finding that autism is more common among some studies have shown this, among individuals who are blind/low vision than the sighted population. But also children with autism are more often diagnosed with significant vision disorders. So that's an important connection to be paying attention to because what you'll need to do then is really kind of consider are these things that I'm seeing because of their vision loss or because of autism. Or are both things at play? The other thing to realize is that most neurotypical kids who are sighted, they learn social skills visually. So if you're seeing a child who's not using visual skills correctly and you know they have a vision loss, that might be why you're seeing some of these things, again, like the child isn't making eye contact or the child isn't able to respond appropriately to the non-verbal cues or the facial cues that someone else is making. So that's important. And the other thing you hear a lot with autism and a lot of the interventions are set up for are very, very visually focused. Because they recognize that, actually even though there are higher -- there's more significant vision disorders in terms of diagnosis, a lot of the interventions are focused on visual supports because they do recognize that as a strength. Vision being a strength over like, say, verbal language skills. Okay. And then another thing that I just wanted to point out -- and this might be very, very obvious. But this is one that comes up a lot though for me, especially with DeafBlindness. Especially if the individual has really significant vision loss. Just these kind of behaviors that really I don't think cause any harm or aren't really a problem but are something that other people kind of find odd or problematic. They talk about it being self-stiming kind of behaviors. It's these stereotypic behaviors that sighted and neurotypical people don't engage in, although we engage in several types of self-stimulation. And a lot of them are common in people who are blind/low vision. There's a photograph here of a young Stevie Wonder and he's a good example I can use because a lot of people seem to know him. He weaves and rocks his head a lot when he's playing at the piano and singing. He also does it a lot if he's speaking or giving a presentation. This rocking back and forth, this head swaying, kind of bouncing a little bit, these are all behaviors that are quite common in children and youth with visual impairments. There are things, again, that can be -- if there's not a strong adaptive purpose for it and the child is also interested in learning not to do it, it could be taught to decrease that and be more aware of it. Remember, they're not getting that same visual feedback that other people would be getting. Like someone would be noticing that you're rocking back and forth a lot or that you're spinning around and might be kind of giving you a look like why are you doing that. And you might pick up on that and think, oh, I better stop. But this is another one where paying attention to the intensity and how often it's happening, that could indicate it could have more to do with blindness. So pay attention to that. A good friend of mine, David Brown, he used to work for California DeafBlind Services, pointed out to Maurice and I, when we were thinking about that article. And he still talks about it all the time. What he doesn't understand, because his background is DeafBlindness and pretty much only DeafBlindness and also CHARGE syndrome. He's an expert in that area. He talks about -- he doesn't understand why individuals who are autistic aren't described as Deafblind. Because there's a lot of behaviors that are part of autism that are also characteristic of DeafBlindness. There's these really unusual visual and auditory characteristics. And, you know, whenever I have this conversation with him I explain, well, that's because people know what autism is. People have heard of it. There's been a lot of awareness of it. There's more individuals with autism than people who are Deafblind so people have just had that experience. But I think it's a good thing to note that there are particular visual and auditory characteristics that are common in ASD but you might also see them in someone who's blind/low vision, someone who is Deaf/hard of hearing, and someone who is Deafblind. On this slide -- I won't have to read through all of them -- but you can see on the left side there's all these visual characteristics for making eye contact to following other people's movements or gaze, mimicking other people. And also being very kind of focusing in on certain visual details and missing other ones. Maybe being very attracted to certain lights or the way that lights might be coming in through Venetian blinds. And then auditory. One of the things that they often check for is to make sure, first with autism, is to make sure first that there's no possibility that the child is deaf or hard of hearing. But just not being responsive to social initiations or to loud sounds. The child might not meet those same language milestones. And are using visual or physical means to communicate. Those would be some things that a child who is Deaf or hard of hearing might do too. If these types of behaviors are evident in a child, that doesn't have to mean the first thing you jump to is autism. The other thing to keep in mind too is there's a lot of children who are Deafblind who have brain-based vision and hearing issues. So whether it's CVI or CAPD or auditory neuropathy -- and you might see some of these types of behaviors as well. So sometimes people discount the sensory loss is it's not something that's evident in terms of the actual -- how the ears and the eyes are working. Okay. So I really believe -- and I've been saying this for ten years now, and people can have different opinions. That's fine. This is very much my belief and my colleague, Maurice. First, why does the question of autism come up in the first place? I think it's because the behaviors look very familiar. We just talked about the familiar behaviors, the similarities. There's also a lack of knowledge about DeafBlindness or certain types of visual impairments by both medical professionals and educational professionals. People have more awareness of ASD though. And a lot of school systems have invested a lot of resources, time, and training into autism. So if you've got those types of programs and teachers trained in that area and this kid, even though you know they have vision and hearing issues, is behaving in a way like those kids in that class, you might think that you're going to label the child as having autism. And sometimes families and support providers will also seek a diagnosis because there's more services and supports for some individuals with autism. So a family might really want to get some services in home and their state might not be offering that because the child has DeafBlindness but they might offer that to a family if the child has autism. So those are other reasons that I think this comes up. So we've established how different the world is to individuals who are Deafblind or who have autism. And just this slide is just a cute little boy holding up a hula hoop. That's just to remind us of how limited information to the world in general is to someone that has limited distance senses. They are able to -- as far as they can reach, if they don't have some kind of assistive technology or way to amplify auditory information and magnify visual information, they don't have access to things too far outside of their reach. So they're missing so much information about the world that other kids are just picking up and learning about effortlessly all the time without even trying. On this slide is a photograph of a little girl putting on her shoes. I use this as an example of incidental learning and how kids pick up things, most things we learn in life we learn incidentally. Because we're looking and we're listening. So 97% of how we learn things, how sighted, hearing, neurotypical kids learn is just because -- and they're not even intentionally focused looking -- sometimes they are. But there's a lot that they're paying attention to and looking. There's a picture of a girl putting on her shoes because every little kid, if they have the motor abilities to do it, goes over and at some point tries to put on their shoes or their sibling's shoes or their parents' shoes because they've seen other people do it. They've figured out that shoes belong on your feet. They don't belong on your head on your hand, they belong on your feet. We put them on if we go outside. Maybe we wear rain boots if it's a rain day. All these things don't have to be directly taught. But they do for someone who is Deafblind or who has vision loss. They are missing all of that information. That's a whole lot of information that is not available to someone that can't see well. And then someone that can't see and hear well, 97% of it and only 3% is learned through what we can taste, touch, and feel. So we have to keep that in mind and that might be another reason why we're seeing some of these differences in how a person interacts and behaves and the types of things they need. Kaycee, I'm just going to check and see if there's any questions I need to respond to yet. 

>>Kaycee: No, ma'am. 

>>Julie: Okay. All right. On this slide is a picture of a baby crying -- it's a cartoon. There's a baby crying in the backseat and there's two -- I guess two of his siblings or two other kids in the backseat and they're fighting. And then there's an air bubble with the words of someone yelling: Quiet back there! I need to watch the road! And so I use this to kind of point out that that statement doesn't seem to make sense. Because why would we need it to be quiet if we have to look at something? But it's because we have to do that at times when we really have to focus and pay attention. That's the way that we compensate for if we have to -- so this is something that you might have said to people in the backseat of your car. You might have been in the backseat of a car and had parents say this to you. But even though it seems to be nonsense that if you're trying to look and see, that you can't hear noise. That is actually how our sensory system is set up to operate. We know the times that we can filter out information and grab the right information that we need through the sense that we should be using at that time. Other times we need to try to diminish that. This was another thing that when -- typically when you're in this situation you're in a heightened state of alertness or frustration. That's just to point out that all of us are in those situations but you don't want to be in those situations 24/7. But that could be how the world sometimes seems to individuals who are neurodiverse or individuals with dual sensory issues. And then I also talk about this in the article -- and I'm not going to go too far into it given our time. Because I really want to get to these next upcoming slides. The thing about our sensory system is it's set up really well to provide information to our brain so that the senses send information in, so that our brain can do two things. First to be aroused and alert to know when we have to pay attention to things, such as when you're driving a car and you have to concentrate and it's too noisy in the back. But also to gather information so we can discriminate, plan, and map out what we need to do. And in most cases these things complement each other. Our sensory system effortlessly does this and people who have autism, that is not the case. What's been reported by those individuals, what people who have done a lot of research and theorized about is autistic brain have found typically they have a heightened sense of arousal and it frequently overpowers that discriminating input so they have difficulty with that executive functioning and that mapping out their environment. That's a reason they might be really tied to predictability, structure, and routine. This is a great slide that I share. It was from Kate Beals. She's an occupational therapist that I heard speak at the CHARGE conference, who this has helped me remember how the sensory system works is thinking train. So there's tracks going to our brain and then tracks coming out. And sensory information can only go in. So our sensory system is gathering information and it goes to your brain through all the different senses. And then motor comes out. So any responses that you see. So positions that you see children do. Behaviors that you see children do. Rocking, head swinging, maybe even skin picking. All kinds of different behaviors that might be problematic in terms of autism or DeafBlindness, that's a motor response to the sensory information they got. So if some of that information is diminished or missing or distorted, you might see a different response than you would see in a neurotypical person. But just knowing sensory information can only go in and motor, that's the message that's coming out. That comes out on the outbound track. So I've spoken about the similarities between autism and DeafBlindness. And the next two slides what we're going to do is get into thinking about how vision and hearing issues might -- we might see similar behaviors in a child who's Deafblind or blind/low vision as you would in a child that's autistic not because they also have autism but because their sensory system is not functioning fully or properly. But with a child who is autistic, that has to do with how they're processing the information, how their brain is processing the information. Remember, autism is a neurodevelopmental disability. It's brain based. It has nothing to do with how their eyes and ears are working. It's how their brain is making sense of the sensory information that's coming in and how they're responding to that. Because of that, there's a lot of these similarities in terms of routines, behaviors, that difficulty with executive functioning and those delays with social communication. I want you to keep in mind -- I see our time is quickly leaving away but think about how we all fall somewhere on this spectrum. All of us at some point and at different times and in different context are somewhere on this spectrum. Okay. So resistance to environmental change. This is a big one for autism. We've already talked about what that looks like. But for someone who's Deafblind or blind/low vision, this is very, very important. They are relying on this so that they can predict what's going to happen next, so they can be more independent. So they can participate in the lesson or activity that you have planned. Without having a very stable and predictable environment, these individuals then become more reliant on other people. They also are living in a state of kind of stress and fear. So resistance to environmental change, someone that's going to want their materials to be in the same place, to be able to find their shoes. There's a picture here of shoes lined up. To be able to find their shoes in a row or in their cubby at their desk are things that make a lot of sense if you have diminished or missing vision. This is a picture of Leo Kanner, who was the person who came up with the definition of autism. And first started reporting on these individuals. And what he said is that a feature of ASD is an anxious -- anxiously obsessive desire for the maintenance of sameness. For someone who is neurodiverse, there's a good reason for that. The world doesn't make sense to them in the same way as it does to the rest of us and that would be true of a child who has vision issues or who is Deafblind. Restricted areas of interest. This is another common feature of ASD. It also would be very understandable in someone that hasn't had as much exposure. Remember that hula hoop picture I showed? If you haven't had experience with things that you could see from a distance or pick up because you've heard from a distance, or if you're a child who also has some additional health issues or motor issues, then you might not have been able to go as far in your environment. You might have restricted areas of interest just because you haven't had exposure to those things. The other thing is a lot of children who are Deafblind, their receptive understanding of language and their receptive ability to be able to follow a conversation might be much higher than their expressive. The reason they might talk about the same things is because expressively that's what they're able to communicate about and they want to engage in the conversation. Thankfully, for both autism and DeafBlindness are a lot of interventions that can be used to help in this area. But just because someone has restricted areas of interest, that's not a reason to jump right to autism. I would first really think about what has that person's experience been. Has that been limited or restricted? Or is there another way we could be supporting them so they could express more on different topics. Delays in social interactions. This is again an area that I think is really misunderstood in DeafBlindness as well as autism. In DeafBlindness and blindness/low vision, as we talked about earlier with incidental learning, 85% approximately of what we learn we learn from watching. We get a lot of social feedback about the ways to interact, about whether someone is interested in what we're talking about. How someone's feeling. Whether they are enjoying themselves. Whether they look confused or puzzled or need help. All types of things we're picking up from facial expressions. There's a photograph here of a group of people that look like they're at an office party that isn't very fun. I'm making that assumption because none of them are smiling. They're staring straight at the camera. These delays in social interactions are very understandable to someone who is missing that information. And for someone who is neurotypical or neurodiverse or has autism, the reasons you might see this is because they aren't understanding all the social rules so they don't get that same feedback and they're not picking up on that same reinforcement that others are getting. Resistance to changes in daily routines has a lot to do with what we talked about earlier with the environmental change. These are all areas that if you are blind, low vision, or Deafblind, you're going to cling to these things mightily because this is how the world makes sense to you. Not wanting those things to change, getting very upset, shutting down and choosing not to participate then. These are all very understandable responses for someone who's Deafblind. And all of us kind of -- think about this. All of us have difficulty with this and if -- think about it. Probably if you thought about a really bad day you had recently is because a lot of unexpected things happened or routines that you were doing something fell apart and didn't work. If that happens multiple times in a day you're like, oh my gosh. I cannot believe this day. I cannot wait until the day is over. What if that's how the world seemed to you all the time? That might be some of the reasons you're seeing those things. Unusual and repetitive behavior . When I hear about people with DeafBlindness or autism, that diagnosis, it's almost always because of the lack of social interactions, their rigidity in terms of transition and changes, and then these repetitive stereotypic behaviors are unusual and they're not things you would see someone else do. On this slide there is a boy sitting with his legs crossed and he's clapping his hands together and looking at an iPad. Another one is a girl, she's sitting in a chair, a folding cloth lawn chair. And she's got her head buried in the seat of it and her arms are hanging over the sides of the armrests and her knees are tucked under her belly close to her head. I want to show you a video right now to explain a specific story that I like to use to explain this. This is a young girl that I've known for a long time. She has CHARGE syndrome and she was at a birthday party. And it was at a public park so there were a lot of people around. And she was playing on all the play equipment. A lot of people were stopping to either talk with her or sign with her. She uses total communication. About an hour and a half into the party, she went over to a chair that was empty and she climbed in, put her head down in it, tucked her knees, and just engaged in this behavior. For the captioner, there's no sound you need to transcribe. You're just going to watch her rocking and hear background noise. 

[Video] 

>>Julie: So you see that. That's unusual. That's not what kids do at the park. I'm sure a lot of people walked by and go look at that kid. I bet she has autism. What she did a few minutes later is she got out of that chair, she walked over to the father of the boy that was having the party, and he was making balloon animals. And she was able to get really close, engage with him. You can see by their expressions they're both having a positive, happy interaction. And this is all because she knew internally what she needed to self-regulate herself. It brings me back to what my friend David always says. We look at these behaviors and we think they're such a problem and we have to stop it or we've got to change it. Really, these kids have already figured out what they need. That was a very purposeful, adaptive behavior that she engaged in that was not hurting anybody. All it did was help her so that she could then continue to have fun at this party. Versus, you know, instead having a meltdown and her parents having to leave suddenly because she's too overwhelmed. There was a lot happening in that environment. A lot for a small child with CHARGE syndrome to take in. And she handled it marvelously. I think. Unusual responses to sensory experiences. We've talked about that with autism already. Clearly it would be something that would be an issue. If you couldn't see or hear what was about to happen, you might have a very big response to something. So this just goes back again that we all fall somewhere on the spectrum. And I think we should give a lot more grace and have a lot more empathy for people that experience the world in such a different way, whether it's because of limited or missing visual information or if it's because of just processing that differently in your brain, if you're autistic. Now what I'm realizing I'm going to need to do, because we're not going to get to everything. And you will still have the slides so you can think about it. We're not going to do that pop quiz. And I talked a little bit about that. I want to just -- I see I've got a few minutes left so I'm going to just go to this slide. I think I'll just keep this open rather than it will be easier to go this way. So there are different interventions that are set up for autism. As I said earlier, often applied to individuals with DeafBlindness. And I've got some concerns about that. And, again, this is Julie Maier's opinion so this is not coming down from the director of an educational agency. This is not coming from a medical practitioner or psychologist. But my experience, from teaching children who have autism, being in classrooms of teachers who are teaching those children, is that a lot of the intervention and instruction related to autism is very adult directed and initiated. For a lot of children with DeafBlindness, that's not the best way to go but a more child-focused, child-directed intervention is better. There are models for that in ASD, so that's one thing to think about. There's also a super strong focus on the behavior of the child. And I think you've got to be thinking about the sensory limitations first. You have to account for that first to better understand the behaviors, versus just trying to change or reduce or extinguish the behaviors. A lot of ASD interventions need to be implemented in a very specific manner and so there can't be a lot of flexibility with that. That's something in the Deafblind field that we really rely on. That creativity and flexibility and individualization. There is a lot of focus on communication and reciprocal social skills, which is wonderful. But, again, they've got to pay attention to what's missing in terms of the vision and hearing and those multi-sensory needs. And then, finally, a lot of the interventions are very focused on visual supports and also auditory cues and auditory directions. And if a child can't hear those things or see those things, that is a big issue. I'm looking at the time. And the last thing I'll say -- I won't have time to do all the other slides but feel free to reach out. I really think -- these are my final thoughts. Not that it can't occur. And there's two slides that talk about potential benefits as well as concerns. But I really think that first people have to be more aware and more knowledgeable of dual sensory or multi-sensory losses. Someone who's an expert in either DeafBlindness or vision education needs to be part of the assessments. If you're doing an assessment for ASD. You have to really stop and think about what that additional label would offer. If it's going to offer more resources, more connections for the families, DeafBlindness is a very low-incidence disability. Families may want to be connected with other families that have similar support needs. But if that additional label is actually going to restrict the child's options in terms of educational settings, that's something to really be mindful of. And then, finally, what are the different evidence-based practices that would be appropriate for a Deafblind learner. And I do have a second webinar -- I can share it with Kaycee or I'm sure you can find it, if you Google it. It's called Building Bridges. Connecting interventions for ASD and DeafBlindness. Something like that. But it's out there somewhere on the web. Anyways, there's my contact. Feel free to reach out if you would like. I'm so sorry I wasn't able to get through everything. But this was fun. I'm going to stop my share.