WEBVTT

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Welcome, everybody, to our webinar. We're just going to wait a couple of minutes to let everybody join in. But we are going to start shortly.

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All right, I think we could get started now. Welcome, everybody, to this month's Ask the Experts session. My name is Lula Esquintana, and I am the Outreach and engagement manager for the Charge Syndrome Foundation

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I will start by reviewing the

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accessibility features for our webinar

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We have ASL interpreters

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You could spotlight them by right-clicking on their video and clicking Spotlight

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Closed captioning is enabled

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You can access closed captioning by clicking on the CC button on the bottom of your screen, and we will have Spanish interpretation as we discussed earlier. You can access the language channel by

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clicking on the interpretation glove on the bottom of your screen and selecting Spanish

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Now we're going to have our interpreters explain the same information that I just shared in Spanish

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podran acceder a la misma

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a pregunt

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Thank you.

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Nodule en escribiernos o ami o 18. Gracias, you can go ahead and begin the interpretation, Ludes. Good luck.

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And…

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Interpretation room is open

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And now, officially, we can start. We are very excited today to have this amazing panel of experts, and we're going to be talking about something that we hear about in our community constantly. We're going to talk about the differences and the similarities between autism and CHARGE

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And our experts are going to also share their experiences and tips and how does it actually help families. So I'm going to be turning it over to Dr. Tim Hodger. He's going to be leading the panel discussion

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Don't forget that you all gonna have an opportunity to ask questions at the end of our session, and you could also start adding them to our Q&A section in the bottom of your screen. So thank you so much, and I'll turn it over to Tim.

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Tim, you're muted

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That's why I never turn that off. It's wonderful to be here. Thanks for the opportunity.

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We've been looking forward to this for some time and

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It's really exciting for me because we have three people

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presenting with me who have a lot of experience to share with you about CHARGE and its possible association with autism

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Julie Mayer, who's the director of the DeafBlind Project in California, has extensive experience in the schools and working with

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Individuals with CHARGE, as well as, of course, individuals who also have autism, Lily Slavin is

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Licensed psychologists working at

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Mars Hospital in Delaware, and she has also has a major part of her work there is has to do with autism

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And Casey Stratton

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is from Mississippi State University, but she's also the executive director of the Mississippi Institute on Disabilities at Mississippi State, and Associate Professor of School Psychology there as well. And

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She has

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You know, through all her training and internship and residency and her work at Mississippi State, a lot of experience also with autism and extensive experience with CHARGE

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So

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I'm going to share our Powerpoint, and then we'll we'll get going here.

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Okay, a label that helps.

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And that's probably to me kind of the the key question. Is it useful?

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to have an autism diagnosis along with CHARGE.

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So the plan for this webinar, we'll talk about the diagnostic criteria for autism

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some of the difficulties and concerns with the assessment

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And then a guided discussion about the usefulness of pursuing an autism evaluation or diagnosis, and how to advocate

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For appropriate assessment and supports

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And what are some deafblind adaptations for intervention and educational supports?

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And I think these address a lot of the questions that you all submitted to us ahead of time, which we've looked at and we'll try our very best to incorporate. We also have a list of resources at the end of the PowerPoint that might be useful to you if you want to pursue the topic further.

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So first of all, the Autism Diagnostic criteria

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And I believe Larry is going to address this.

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Yes

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All right, so there's a lot of text on the screen here. I first wanted to start by showing an overview of all of the different criteria that we are looking at when we're making a diagnosis of autism.

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And before I go into this, one key difference that you'll see here compared to looking in if you were to open up our diagnostic book for diagnosing autism is that I'm going to use strengths-based

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language here. So you'll see that I have it written as persistent differences rather than deficits. And the reason for that is in my practice, we really try to take a neurodiversity affirming approach when we're thinking about autism

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Meaning that we're recognizing that autism, just represents a difference in the way that someone's brain works as it relates to social communication and interaction, and then repetitive behaviors and interests

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So to make a diagnosis of autism, there are three key differences that are needed within the area of social communication and interaction

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And then two out of four differences that are listed in the area of repetitive behaviors and interests.

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And Tim, if you want to go to the next slide, it just has a social communication.

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Sorry.

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Thanks. Alright, so a little less text on the screen. Oh

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While I just talk through, so just there we go. While I first talked through social communication.

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So within this cluster of characteristics, there are three different areas. The first is looking at differences in something called social emotional reciprocity.

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And that is a really jargony way of saying the back and forth nature of social interactions.

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So when I'm evaluating for autism, the areas within this category that I'm looking at are how is someone initiating social interactions

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How are they responding to social interactions from others? And then how are they maintaining a back and forth interaction? That could be through play or through conversation

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And when we're thinking about autism, we're looking at differences in the frequency of how often these things are happening, and also looking at the quality of how it's happening.

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So this might look like having a preference to

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Play individually and maybe not initiating social interactions as frequently with others. So having sometimes we see less of that social interest in engaging with others and a preference for independent play and interactions

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We might see

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a reduction in the different reasons that someone is trying to get someone else's attention. So, we might see that occurring primarily for the purpose of asking for help.

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Rather than a wider range of things, including showing things to others, directing attention, initiating play, having conversations, some of that social chit chat

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We also might see differences in how someone is initiating. So, for example, we might see

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A younger child taking someone's hand to do something for them, without trying other methods of showing… of communicating, especially if that person does have other ways that they can communicate. We might see that be a first go-to.

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We might also see that there it might be more difficult to get someone's attention. So you might need to see needing to call their name several times or kind of

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get in, get in front of them so you can visually see them, or touch them to get their attention.

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And we might also see some differences in back and forth play in conversations. So that might look like sharing a lot of information at length about interests and

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Preferring to share information in that way, rather than having, like, a back and forth conversation.

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Or we might see play that's a little bit more focused on the individual rather than kind of turn-taking and whatnot

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So that's the first area that we're looking at.

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I'm gonna explain all three of these, and then I'll kind of point out where are some reasons that it could be really that these criteria are not necessarily made with people with CHARGE in mind

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So the second area is looking at differences in nonverbal communication

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So, usually we're thinking about things like eye contact, facial expressions, using gestures, and then intonation of a voice to convey a message.

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And then lastly, we're looking at differences in developing, maintaining, and understanding relationships. So we're looking at how is someone

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What is their level of interest in developing those relationships with others? How easy or difficult is that for them

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How are we picking up on some of those social cues and having that back and forth play?

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So is there a really, again, a stronger preference for independent play or parallel play, meaning playing alongside someone? Is there really strong preferences for how the play goes? So if someone messes up the play, is that really distressing? And is there a really strong preference to be in the lead

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And is there difficulties in adjusting behavior to fit the needs of different environments? So for example, knowing that we need to

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say next to the caregiver and when in public or in the grocery store, or knowing to use a quieter voice if you are in church.

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So within these three areas, these

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Criteria are really written with the assumption that someone has intact sensory systems

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And

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they're written based on an assumption of

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neurotypical and hearing and seeing social norms

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And that context is really important when we're thinking about how might these characteristics show up in someone with CHARGE.

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So the examples in nonverbal social communication, thinking about eye contact, facial expressions, intonation of voice

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We can almost automatically assume that all of those areas are… should be impacted in CHARGE, or there should be differences that would be consistent with what we would expect of someone with CHARGE.

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We might expect with coloboma that eye contact is going to look different

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It might not look like the person is looking directly at you.

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We might see that, you know, related to hearing loss, cleft lip, coinal atresia, and stenosis, that some of that intonation of voice might sound a little bit different, understandably.

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And with cleft lip facial palsy, some of the characteristics that are really core to CHARGE, those are all going to impact facial expressions as well.

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And then thinking about in terms of social emotional reciprocity and then developing relationships and friendships with others, again, those are all based on

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assumptions that

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people can see and hear the world around them.

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So if those things are more difficult for someone, we would expect that there's going to be differences in the frequency with which the frequency of how often someone is initiating, how they're initiating, and how much they're having that back and forth

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So for example, if someone cannot see or hear that there is someone in the room with them

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They're likely not going to initiate

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is that because they don't have the interest in doing that, or they don't have the skills in doing that or is that because they just are not aware that the person is there?

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So there's a lot of nuance here that really needs to be considered when we're thinking about applying these criteria to some of the CHARGE, which we'll get into a little bit more in some subsequent slides.

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I'll pause here before moving on to repetitive behaviors and interest just to see if my co-panelists wanted to add anything in this category.

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I was going to say, I think in the next section, Lily, I'm going to throw in quite a bit. So I'm cool with moving forward.

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Okay.

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Julia or Tim, is there anything you wanted to add

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Sure.

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The only thing that I would add, Lily, is that I do feel like this portion of the diagnostic criteria is the one that I think is most important

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for

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Evaluators and families to be thinking about because I do think this is the harder area for individuals with CHARGE to meet. I think the second section is more likely that they can meet those requirements.

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Yes, and thank you that prompted me, Julie, thank you for that reminder. When we're thinking about a diagnosis of autism, these differences in social communication and interaction are the core

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characteristics. These are the characteristics that are more

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unique to autism or specific to autism, and the repetitive behaviors and interests that I'll go over next are ones where we expect to see a lot more overlap when in diff… in different diagnoses and people who are not autistic

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As well

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Thanks for that, Julie. And Tim, were you going to add something too?

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I guess I was just going to point out that

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We don't have a blood test for autism, so we're relying on behaviors

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And of course, we can get very sophisticated in exploring the behaviors

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But in the end.

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We don't we're not getting to a cause other than presumption

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that, well, if you show these behaviors, we presume you must have autism, as opposed to if you show these behaviors, we know there's some issues

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But is it necessarily autism. It could be something else.

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Like, CHARGE

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Thanks, Tim. If you want to go on to the next slide.

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So now we go to the next slide.

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Oh, yeah. Yeah, thanks, Tim.

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All right, so this is a second kind of grouping of characteristics in the category of restricted, repetitive patterns of behaviors, interests, or activities.

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The two out of four are needed here in order to meet diagnostic criteria for autism.

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So the first is looking at a repetitive way of engaging in motor movements, use of objects or speech

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And really, I'll kind of go point by point here. So, in terms of motor movements, typically what we're looking at is a repetitive way of moving one's body. That can include twisting fingers in a certain way, that can include

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Shaking hands, that could include walking on toes

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Kind of

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Holding your body in a specific position. And as I'm saying these characteristics, you might be thinking, oh, well, my kid does all those things

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Now, let's remember this is the category that is less characteristic, specifically only of autism. In CHARGE, there are a lot of we see a lot of those body movements being really driven by the sensory differences

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So we know that the proprio… the sense of proprioception is really significantly impacted in CHARGE, as is the vestibular system

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So we expect to see

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putting the body in positions to increase that sensory input so that there's that

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more of that understanding of where is my body in space.

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And the things that the finger twisting or like body rocking that's going to be giving a lot of really good vestibular input.

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So what

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While these are characteristics that might be seen in both in autistic people, we

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don't see that being driven by an underlying sensory loss

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Versus in CHARGE, we see those behaviors being oftentimes related to trying to compensate or, you know, increase sensory input when

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They're not getting that.

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Then we see a repetitive use of objects. So what we're looking at here is preference to engage with objects and toys in a more routine or repetitive way. That could include things like

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lining things up or having a really amazing organizational system that might be by size, shape, color, category.

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We might see

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enjoying to turn things on and off, or open and close things over and over. And we see that that makes up

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a lot of times the

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The bulk of someone's play is really preferring to engage in those materials and objects in a more routine and repetitive way.

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And then looking at repetitive speech

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So this is not just something that we see commonly in CHARGE is maybe asking some repetitive questions and looking for information and asking the same thing over and over. What we're thinking about in autism, that can be part of it, but more so we're looking

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repetitive speech such as echoing back what we are exactly what has been said in the same intonation, having scripts where you might hear certain

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Phrases or longer sentences that are repeated from somewhere else, such as a TV show or a favorite movie. We might see

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From a young age, having really advanced language, so using more formal speech, more sophisticated vocabulary, that's really beyond what you would expect for someone of that age.

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You might see referring to oneself in third person. So instead of saying I want a cookie, say Lily wants a cookie.

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Or reversing pronouns. So instead of saying, I want a cookie, say you want a cookie when you really mean I want a cookie.

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We also might see some more noises, verbalizations that are not meant to communicate something to others that are more just for

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that more self-directed, meaning it's not… it's not towards someone else trying to request something or communicate something. It's more just a noise that might feel good, sound good to the person.

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That's… go ahead.

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We'll need to keep moving along, Billy.

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Okay. Then we're thinking about insistence on sameness routines and patterns of behavior. Here we're looking at wanting to have a set routine, having a hard time when there's changes in routine

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Looking at really strong preference for things being done in a specific way.

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And really hard time when things are… if things are changed.

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Then, looking at focused interests. So

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Having a really strong interest in a certain topic, a really good memory for certain things, interest in something that might not be expected. So that could be

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like, interest in a certain object that might need to be keeping on person, something like that.

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And then lastly, we're looking at sensory differences, which in CHARGE, we know that there are sensory differences. Here, we're looking at differences in sensory need in terms of sensory seeking or sensory avoiding that's not explained by something like sensory loss

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So looking at close visual inspection, looking at sensitivity to sounds

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Looking at sensitivity and noises, certain textures of food and clothing. And again, these are not explained by an existing sensory loss, and it's not compensating for a sensory loss.

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I'll pause there and see, I know Casey wanted to add some things here.

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Yeah, if you're good, I could just jump in with my next one and kind of and chime in with this topic, too. So I think that when we think about this, I'm seeing some questions popping up like, yeah, yeah, yeah, we get there's an overlap. What about that overlap? And

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You're making a lot of sense as a parent or caregiver or teacher who's here going, tell me more about that. And I think one of the… I'm going to speak really openly and honestly with you. I'm a psychologist. I have seen hundreds of individuals with CHARGE, and I've seen hundreds of individuals with autism

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And I will likely go to my grave saying these are two distinctly different populations of people. And I will say that because not because we've underestimated what the sensory impacts are in charge or if there's another behavioral profile of autism overlapping with CHARGE

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I say that because in autism, we have no understanding yet why these social deficits, communication deficits, and restrictive and repetitive behaviors happen. We probably actually know way more about CHARGE syndrome than we know about autism at this point in the literature of why there's a cause of some of these behavioral profiles

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And autism, like Tim said, there's no blood test. There is not even a genetic-based testing right now. I think we'll get there, but not yet that says what distinctly causes autism. But we can very logically put together why there is a look of overlap of these symptoms

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We don't have assessment tools right now that are standardized, normed, and ready to look at autism within our CHARGE community. As a professional, I think you would have to be really cautious in giving both diagnoses

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But in a minute, I'm going to tell you why you might end up with both diagnoses to help you out and maybe a pro of that option. But when we think about the social emotional and restrictive repetitive behaviors and sensory behaviors, I think what's really important to also keep in mind is autism is a lifelong diagnosis all by itself

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It has its own root of why it happens. CHARGE syndrome is a lifelong diagnosis that we very clearly have identified the genetic roots and the clinical manifestation of how CHARGE syndrome comes to be.

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When we look at social emotional reciprocity, if you are not able to see and hear in your environment, your social skills will be impacted. You are going to miss parts of the conversation, you're going to miss the access to communication in that situation, and as a byproduct of that, your capacity to engage might look immature, it might look like you can't engage in reciprocity of that communication

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But in CHARGE, what's uniquely different is you're missing it. Not that you don't engage with the conversation, and that's very different than persons with autism and my clinical experience and working with those persons. And I can say, after many, many years of attending conferences and being with individuals with CHARGE

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The moment I make them aware that they've missed a piece of a social cue or communication, they immediately get right back on track with the conversation and the setting. My individuals with autism do not do that. I have to prompt social behaviors to tell them why it's important to come back into the conversation that everybody's engaging in.

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If we think about those repetitive behaviors too, there is a need for sameness in charge. If you cannot see and hear your environment the same way those around you do, sameness is very important. Knowing where your shoes are located, how they're lined up, where the house is set up

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How the classroom is, what the routine is at school. All of those things are, for me, a means of survival in charge. How do I engage in my community? Because I have to have those things set up. So

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when we think about these 2 different pieces, we also kind of have to come back to the root reasons why individuals with CHARGE might look like there's an overlap. But really, what are the skills and opportunities we need to provide in the environment so that individual with CHARGE has full access to that space

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And to not engage in what looks like maybe a social-emotional or restrictive and repetitive behavior, because we don't have it set up. So, Tim, that's going to bring me to the next slide, which is my section, I think, and I'm going to keep kind of cruising for time here

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What are the potential benefits and problems with adding an autism diagnosis, and is it useful?

00:29:48.000 --> 00:30:01.000
And I gotta tell you, I'm really torn on this one because I think there can be some real pros and cons to this. I will say, though, having been a psychologist who knows both, I've never given both labels

00:30:01.000 --> 00:30:17.000
And so, I think that's important to keep in mind, because I see the presentation of these behaviors in CHARGE very differently. But what could be some benefits? First and foremost, I think for, because insurance is set up the way it is, particularly in the United States

00:30:17.000 --> 00:30:33.000
In order to get access to many behavioral interventions, something like ABA therapy, behavioral psychology, the supports that happen when we haven't been able to build communication as quickly as we need to, and challenging behavior starts to come on the scene

00:30:33.000 --> 00:30:54.000
Unfortunately, the autism community has beat us at this. They have advocated with insurance companies, they have advocated at the federal level that essentially to get ABA services, you have to have a diagnosis of autism. And while some states have changed those criteria and allow folks like individuals would charge that access.

00:30:54.000 --> 00:31:10.000
Many states in the United States have not. And so, in order to get access to what might be really beneficial behavioral resources, it might be beneficial to have an autism label, because that gets you access to those things

00:31:10.000 --> 00:31:30.000
However, what the downfall of that is, and one of the cons, is they might look at you as the therapist or the provider of those services now is only an individual with autism and not as an individual with a sensory or hearing loss. So vision, hearing loss, the combinedness of those losses as a deafblind individual

00:31:30.000 --> 00:31:46.000
But also, they might not recognize your balance needs, the activities you engage in. They might stereotype you as quote-unquote, the individual with autism they worked with last week, and not the uniqueness of the individual with CHARGE

00:31:46.000 --> 00:32:04.000
And so one of the biggest cons in this is they miss the medical needs that present in CHARGE. And that makes me very nervous because we are still learning every day about as individuals grow and live through the lifespan with CHARGE syndrome, other conditions that can pop up medically

00:32:04.000 --> 00:32:21.000
That can trigger challenging behaviors that we might treat as a behavior rather than treat the medical need. And that really makes me nervous when we just look at an individual for autism and don't consider how CHARGE could impact them. Things like seizures, things like

00:32:21.000 --> 00:32:37.000
the impact of pain in their… in their body related to some of their medical conditions, feeding challenges, aspiration, all of these things play a role in CHARGE syndrome that can impact beneficial therapies if you don't pay attention to them in the treatment process, too.

00:32:37.000 --> 00:32:53.000
So, to me, one of the biggest cons is you might forget all of the pieces of charge that are really important to understand that individual. Again, CHARGE does not define somebody, but it is helpful to know the characteristics of CHARGE as you're working to develop interventions and process.

00:32:53.000 --> 00:33:11.000
However, a pro might be having an autism label might get you access to services, it might get you access to interventions that are actually really useful for people who also don't have autism, but they're really known in the autism community, like visual schedules and classroom structure

00:33:11.000 --> 00:33:26.000
Again, ABA therapy, all of these things can be beneficial. And I'll just add real quick as we get ready to switch, one of the questions I saw pop up was we've tried ABA, and that's not been effective

00:33:26.000 --> 00:33:35.000
Well, that's kind of like saying we tried physical therapy and it wasn't effective, but we eventually learned to crawl, and we eventually learned to walk

00:33:35.000 --> 00:33:53.000
You do have to find the provider who understands your whole child and is willing to listen about your whole child and what they need, and that's just as important as finding a really good pediatrician who's willing to listen. You fire the ones who don't, and you find the one who stays. And in all therapy, we have to think about that as we're moving forward.

00:33:53.000 --> 00:34:00.000
I'll turn it over the team if they have anything else to add here. Otherwise, I think Julie's up next.

00:34:00.000 --> 00:34:07.000
Thanks, Casey. So I hope this has been helpful so far. What you're hearing.

00:34:07.000 --> 00:34:18.000
I think one other thing to think about in terms of a benefit in what I've seen, at least in California and with other families I've talked to, is

00:34:18.000 --> 00:34:35.000
So it's sometimes, yes, it does give you access to certain services if you have that diagnosis versus CHARGE syndrome, even beyond ABA. In California, it might get you more services to our regional center, which provides services for individuals with developmental disabilities, things like that

00:34:35.000 --> 00:34:41.000
But I also, I have found that a lot of families

00:34:41.000 --> 00:34:46.000
Appreciate because CHARGE is such a rare incidence.

00:34:46.000 --> 00:34:49.000
And just like all

00:34:49.000 --> 00:35:01.000
sensory losses or low incidence disabilities, you may not know other people who in your community or local area who have CHARGE syndrome, and you might be wanting to have just some

00:35:01.000 --> 00:35:21.000
Support, emotional support or resource support from another family. Someone else to talk to. You might want to go to events that are set up for your child in a particular way. And sometimes some of these events that are set up and that families of children with autism or children who are neurodivergent

00:35:21.000 --> 00:35:33.000
Put on families I know enjoy attending that, or they're really connected to a network of parents in their area that are really advocating for

00:35:33.000 --> 00:35:41.000
programs that have more structure or more routine or someone that knows about a way to

00:35:41.000 --> 00:35:51.000
adapt sign language or visual supports for someone who's neurodivergent. So sometimes I find families all that's one other benefit. But

00:35:51.000 --> 00:36:08.000
I also… I'm concerned about a lot of the problems in the key one, Casey, is that people get very focused on that autism label, and they say, oh, that child has autism. I know what to do. I know what autism is, and they don't find out what CHARGE is. So not just the medical needs of an individual with CHARGE, but

00:36:08.000 --> 00:36:16.000
The educational needs as well. So and the interventions and supports that can work.

00:36:16.000 --> 00:36:20.000
Yeah, I think what kind of what we're saying is that

00:36:20.000 --> 00:36:22.000
People with CHARGE

00:36:22.000 --> 00:36:31.000
engaged in certain behaviors which can be thought of as autistic-like, but because they have CHARGE, not because they have autism

00:36:31.000 --> 00:36:35.000
And I think we're pretty much agreement with that

00:36:35.000 --> 00:36:42.000
The debate is often around, well, if we add the autism diagnosis, does that help?

00:36:42.000 --> 00:36:50.000
The child gets services that they need, and that's an open question. You can look at it both ways. I think it does

00:36:50.000 --> 00:36:54.000
suggest, as this next slide says that families

00:36:54.000 --> 00:36:57.000
Maybe needing to do more advocacy

00:36:57.000 --> 00:37:03.000
For the child with charge to get the services that they believe the child needs

00:37:03.000 --> 00:37:09.000
without adding diagnosis on, I mean, that's something that would be a battle that worth fighting, I think

00:37:09.000 --> 00:37:15.000
Say, wait a minute, these are the issues that my child has. These are the interventions that are out there

00:37:15.000 --> 00:37:18.000
So Julie, why don't you want to talk about this slide?

00:37:18.000 --> 00:37:20.000
Oh, I think this is my slide and Julie's got the next one.

00:37:20.000 --> 00:37:21.000
Oh, sorry.

00:37:21.000 --> 00:37:23.000
Yes, that's correct. So don't still scare me, Tim. This was not my slide.

00:37:23.000 --> 00:37:24.000
Okay, by the way.

00:37:24.000 --> 00:37:37.000
Yep, yep. Yeah. So first and foremost, in terms of how how can you as a parent advocate for appropriate assessment and intervention supports? I first want to touch on the assessment piece

00:37:37.000 --> 00:37:53.000
I've seen in the chat already that some families, it seemed like might be feeling pressured to pursue an evaluation by maybe a medical provider, maybe school teams who really

00:37:53.000 --> 00:38:08.000
Understand CHARGE and are seeing characteristics that they are recognizing as being similar to autistic students or patients that they're working with. So first and foremost, as a family, it is okay to

00:38:08.000 --> 00:38:13.000
not pursue an autism evaluation if someone is recommending it to you

00:38:13.000 --> 00:38:19.000
It is completely up to you if you are pursuing that or not. I think that the

00:38:19.000 --> 00:38:24.000
the possible benefits that we're talking about

00:38:24.000 --> 00:38:32.000
really relate to a medical diagnosis of CHARGE. I'd be of the opinion of for school, there's really

00:38:32.000 --> 00:38:35.000
I don't see a utility of

00:38:35.000 --> 00:38:47.000
when we have a label of deaf-blindness or other health impairment of labeling a child as under the Autism classification because really you're going to be missing

00:38:47.000 --> 00:39:05.000
huge pieces of the child's needs. Medically, it opens up to the services that Casey was describing, but educationally, really, it should be the deaf blindness, the sensory loss should be at the forefront

00:39:05.000 --> 00:39:16.000
So if medically someone is encouraging you to pursue an evaluation, you don't have to do that if you don't feel like it's necessary or it's going to add something for your child.

00:39:16.000 --> 00:39:32.000
If you are wanting to pursue this, then what I know about our community is families are so good at helping to educate providers that they're working with who have maybe not seen another child with CHARGE

00:39:32.000 --> 00:39:47.000
So one thing that you can do if you are going through an evaluation process is share information about CHARGE with the people who are doing the evaluation. Our last slide, which will be available to you all after the fact, has

00:39:47.000 --> 00:40:02.000
Different published articles on CHARGE syndrome and some of the behaviors that are really common in CHARGE. And this is being recorded. This would be a great resource to share with an evaluation team to learn more about the overlap and what are some

00:40:02.000 --> 00:40:09.000
kind of distinguishing characteristics. So, share the information that you have and hopefully that can help

00:40:09.000 --> 00:40:13.000
The people working with your child make informed decision.

00:40:13.000 --> 00:40:25.000
And when you're going through the evaluation, it would be worthwhile to ask if there is someone who can do the evaluation who has expertise in hearing loss and specifically deaf-blindness

00:40:25.000 --> 00:40:35.000
Likely there's not going to be someone like that because there's very few people who specialize in both, but it's good to ask regardless and because that should at least

00:40:35.000 --> 00:40:44.000
provoke the thought of the evaluator of, huh, do I actually have the expertise that's needed to do this evaluation?

00:40:44.000 --> 00:40:50.000
And then when you're getting recommendations and feedback

00:40:50.000 --> 00:41:06.000
Asking questions such as, well, how are these interventions taking into consideration my child's sensory loss and medical complexities? So asking these questions curiously, I think, can make the experience collaborative and can help to guide

00:41:06.000 --> 00:41:13.000
the assessment to be better informed and more reflective of your child.

00:41:13.000 --> 00:41:20.000
So I'll pause there and see if my team wants to add anything. Otherwise, I think we're good to go on to Julie's slide.

00:41:20.000 --> 00:41:31.000
This is Julie. I will just add that one group of people that might have expertise in deaf blindness that you can contact if you need

00:41:31.000 --> 00:41:42.000
Resources, or you want to chat about this or brainstorm is your state deafblind project. Now, different state deafblind projects have different levels of

00:41:42.000 --> 00:41:58.000
Strong understanding of CHARGE syndrome, but quite a lot of them do. And I'm with the California's DeafBlind project. We're probably one of the ones that has a lot of the expertise, but that's because David Brown was with us for 15 years

00:41:58.000 --> 00:42:15.000
And trained a lot of us. But we can also… so all the state deafblind projects connect and talk a lot, so we know how to reach out to different people within the network. So there is out there, but you might not have someone locally

00:42:15.000 --> 00:42:26.000
Yeah, and I think another key thing to think about with, I'm thinking back to the restrictive behaviors as well with the criteria earlier and on this is I think

00:42:26.000 --> 00:42:34.000
What we always need to keep in mind is, especially when we're thinking about behaviors, is why is that occurring? That should always be the first question.

00:42:34.000 --> 00:42:47.000
Why is the child engaging in this? And as we know with individuals with CHARGE syndrome, well, really everybody, but with CHARGE syndrome, we know a lot about specific

00:42:47.000 --> 00:42:49.000
Adaptive

00:42:49.000 --> 00:43:00.000
behaviors that that children perform or or enjoy or do, and they do it for a very purposeful reason. So rather than just saying, that's autistic kids that flap their hands

00:43:00.000 --> 00:43:17.000
are autistic, think about why is my child doing that or why is my child dropping to the ground right now when we're on our way to the store and we're in the middle of the parking lot? Why is the child refusing to do more work in the classroom? Have they just reached their limit with fatigue

00:43:17.000 --> 00:43:23.000
And then the only other thing I wanted to mention that in the chat, and I think this is a good reminder, is

00:43:23.000 --> 00:43:37.000
David Brown posted in the chat, so I don't know if other people saw it, but and I remember him saying this very early on when I met him is lots of what the question is, why are we saying that that child with CHARGE syndrome

00:43:37.000 --> 00:43:44.000
Has autism or looks autistic instead of what that maybe that child who's autistic

00:43:44.000 --> 00:43:51.000
Looks like they have CHARGE syndrome right? So we really have to think about why might these things be occurring

00:43:51.000 --> 00:43:59.000
I think we can go to the next slide, which is about interventions. And we've had quite a few questions about that.

00:43:59.000 --> 00:44:00.000
No

00:44:00.000 --> 00:44:01.000
Oh, where'd it go?

00:44:01.000 --> 00:44:02.000
Sorry.

00:44:02.000 --> 00:44:03.000
No, we got to go back.

00:44:03.000 --> 00:44:05.000
Yep.

00:44:05.000 --> 00:44:07.000
There, nope

00:44:07.000 --> 00:44:08.000
One more.

00:44:08.000 --> 00:44:10.000
This is the one, Julie.

00:44:10.000 --> 00:44:21.000
That one. Oh, oh, I didn't see you had changed it. My apologies. I didn't realize you had already changed it. I thought we were still on the assessment one.

00:44:21.000 --> 00:44:36.000
So deafblind specific adaptations, in the resources that we're offering at the end, there is a nice literature review that actually looked at this idea of bridging what we know from evidence-based practices

00:44:36.000 --> 00:44:38.000
Related to autism

00:44:38.000 --> 00:44:43.000
And how we might want to modify them or adapt them

00:44:43.000 --> 00:44:48.000
to, for a child who's deafblind.

00:44:48.000 --> 00:44:54.000
And so they looked at the different studies that had kind of looked at this. And that is because

00:44:54.000 --> 00:44:58.000
There's been much more research on

00:44:58.000 --> 00:45:13.000
Educational and also behavioral practices related to autism spectrum disorders. Then there have been with deaf blindness and I'm speaking about deaf blindness in particular because we've

00:45:13.000 --> 00:45:21.000
Typically deafblind practices and supports, they're a very good match for learners with CHARGE, even though some

00:45:21.000 --> 00:45:23.000
Individuals with CHARGE

00:45:23.000 --> 00:45:27.000
Don't have both vision and hearing loss

00:45:27.000 --> 00:45:33.000
And so some key things… so what my recommendation has been

00:45:33.000 --> 00:45:37.000
When I've provided consultation

00:45:37.000 --> 00:45:52.000
And when I have done presentations on this, I've done a whole presentation on just this question, but I don't have that much time today, is to really think about how can we bridge what we know about these evidence-based practices in autism, because some of them are helpful

00:45:52.000 --> 00:46:01.000
How will we adapt them or individualize them for a learner with CHARGE? How will we be focusing on the

00:46:01.000 --> 00:46:20.000
Functional vision or and the appropriate assistive devices that the child needs or the accommodations to support their auditory input. How are we thinking about sensory regulation and also emotional regulation? What are the types of strategies that we're changing for those children

00:46:20.000 --> 00:46:22.000
And what I have found

00:46:22.000 --> 00:46:38.000
And what I recommend, I find this works best, and I recommend is that you're always looking at that individual child first, and you're being… you're spending time. So this is both the evaluator and any of the instructors are spending time to really learn about that learner

00:46:38.000 --> 00:46:52.000
Educational profile, specifically their sensory needs and their sensory access. So what do you need to change to make the visual supports that are so common in

00:46:52.000 --> 00:47:11.000
Autism based interventions. What do you need to do to make that work for your specific child? Does it need to be larger? Does it need to be higher contrast? Does it need to have items that are that include characters that the child is very interested in or likes a lot

00:47:11.000 --> 00:47:27.000
What are we? What are we? Are we recognizing that the child's maybe using multiple modes of communication? So not expecting everything that the child can hear every request or demand that's made of them. But we're also incorporating sign language

00:47:27.000 --> 00:47:36.000
Other types of supports we're modeling and always, always keeping those sensory needs and those sensory access needs at the forefront.

00:47:36.000 --> 00:47:38.000
I

00:47:38.000 --> 00:47:48.000
I believe in just teaching any children, but especially children who are deafblind that a key thing you need to do is use child-led

00:47:48.000 --> 00:48:05.000
Intervention. So you're really following the child because you're learning about what motivates them and you're using that as the key or the window to be able to engage them in learning. You can't force a child to learn something or to

00:48:05.000 --> 00:48:12.000
join you in an activity, but you can certainly have more success if you are

00:48:12.000 --> 00:48:17.000
Following what's interesting to them and joining them in that

00:48:17.000 --> 00:48:33.000
And then I also think what's worked well for a lot of learners I know with CHARGE syndrome is thinking about ways that you can incorporate and build choice into the instruction and the activities, and really meaningful choices that allow them to

00:48:33.000 --> 00:48:45.000
At different points in the activity or lesson to kind of be in control. So really thinking about that, that seems to be something that's really important to a lot of learners with CHARGE syndrome.

00:48:45.000 --> 00:48:51.000
I've got a few more things I want to talk about and say before we get to questions, but

00:48:51.000 --> 00:49:03.000
I think a key thing that is a little bit different with or a lot different, actually, with learners who are deaf blind is the time that they need to

00:49:03.000 --> 00:49:05.000
Prepare for a transition.

00:49:05.000 --> 00:49:13.000
And planning for transitions, having well-planned transitions is a key

00:49:13.000 --> 00:49:27.000
Practice that you see in autism programs and with ABA. But really, these children and individuals of CHARGE need more time. So how can we make sure that they have more time

00:49:27.000 --> 00:49:40.000
And that, and you're moving at their pace, and that's going to be different for each individual. So I know some kids that need much… some children with CHARGE that need a very long time to take in the information

00:49:40.000 --> 00:49:45.000
process what you're telling them, because they've got that missing visual and auditory

00:49:45.000 --> 00:49:47.000
access

00:49:47.000 --> 00:49:58.000
And then plan what their response is going to be, and then respond. So you really have to be… wait for them to be ready and comfortable. You'll have much more success. You'll have less of

00:49:58.000 --> 00:50:04.000
I think the resistance and some of the meltdowns

00:50:04.000 --> 00:50:15.000
I mentioned already a little bit about the environmental supports, but really paying attention to auditory and visual supports. This is my one concern about

00:50:15.000 --> 00:50:32.000
Not one, but it's my largest concern about some of the autism-based interventions is that they're because they're evidence-based and when you have an evidence-based practice, it's important that you're implementing it in the way that it was designed and intended. But there can be a lot of rigidity with them

00:50:32.000 --> 00:50:36.000
And not a lot of flexibility, and I think

00:50:36.000 --> 00:50:51.000
If you're educators out there teaching children with CHARGE, you know this, and certainly if your family's raising a child with CHARGE, you know how flexible you need to be and how you really need to spend some time

00:50:51.000 --> 00:50:54.000
Sometimes negotiating and

00:50:54.000 --> 00:51:12.000
and also changing things up, so you can't be super, super rigid, and sometimes there's a lot of rigidity in some of those interventions. So I think being able to think about those things, in addition to the vision, visual and auditory supports, you're going to want to think about

00:51:12.000 --> 00:51:25.000
Seating options and also other physical supports to address the vestibular and the proprioceptive needs of individuals with CHARGE. Just so that has to be another way where

00:51:25.000 --> 00:51:43.000
people are going to be okay if the child needs to be lying on their side while they're reading a book, or while you're playing a game together, or understand that a child needs to jump up and move around the room a little bit, and then come sit back down, and while they were doing that

00:51:43.000 --> 00:52:01.000
They were doing some processing of their sensory system, but maybe also processing what's happening as they're playing this game with another peer, or they're doing a math lesson with you, and then they come back and they're ready. And then finally, there needs to be a space for children to really

00:52:01.000 --> 00:52:04.000
Refocus

00:52:04.000 --> 00:52:08.000
And recharge. So you see in a lot of classrooms

00:52:08.000 --> 00:52:11.000
Not just classrooms that are

00:52:11.000 --> 00:52:21.000
Focus on children with autism, but a lot of special ed classrooms, but definitely in classes for children with autism, they might have other sensory

00:52:21.000 --> 00:52:29.000
activities, things that you can go do for a break. There might be a timeout space or a space for you to kind of

00:52:29.000 --> 00:52:37.000
go make it, you know, go relax or take a break so you can have another choice. Individuals with CHARGE, because of the

00:52:37.000 --> 00:52:42.000
Amount of effort and energy that they are putting out just to

00:52:42.000 --> 00:52:43.000
kind of

00:52:43.000 --> 00:52:48.000
move through the world and remain focused and engaged with other people

00:52:48.000 --> 00:52:52.000
They are exerting an enormous

00:52:52.000 --> 00:53:05.000
amount of extra energy and effort than neurotypical and sighted and hearing peers are, and they need more time for those sensory breaks. So that needs to be something that has to be built in to

00:53:05.000 --> 00:53:22.000
a child's schedule, and I don't… I think you've really got to figure out what works for each child. You can't just have, in our class, when you take a break, we set the 5-minute timer, and then you have to come back. You have to wait till the child or the youth is ready

00:53:22.000 --> 00:53:31.000
Their sensory system is re-regulated and they are ready to come back and engage with you in learning.

00:53:31.000 --> 00:53:39.000
So that's going to entail that you're going to have to have a very flexible schedule. That is, I think, why a number of

00:53:39.000 --> 00:53:47.000
Kids with CHARGE benefit from having intervener services or someone that is able to kind of

00:53:47.000 --> 00:53:55.000
or one-on-one aide who is able to kind of help them notice when they need some of those breaks

00:53:55.000 --> 00:54:08.000
and help to kind of support some of these additional accommodations and learning strategies that are used not to do things for the child, but to be there to make sure that they have access and the support they need to engage

00:54:08.000 --> 00:54:13.000
And then the final thing is just around behavior itself and

00:54:13.000 --> 00:54:24.000
there's a there's a many good articles that Tim has written about behavior in charge, and some are listed in our resources. But

00:54:24.000 --> 00:54:43.000
Thinking beyond just the typical things that people think the purpose of a behavior is because you want, you're requesting attention or an item, or you want to escape an activity or get or not do something, or you're looking for some kind of sensory input

00:54:43.000 --> 00:54:58.000
There can also be things like just a whole level of there could be a level of stress and anxiety the child's feeling just again, because of the high levels of effort and energy they're putting out and not understanding what's happening in the environment, but also it could be pain

00:54:58.000 --> 00:55:17.000
Both Tim and Casey have written a lot on that. And then also just understanding like their sensory system and how they regulate their body is just it's just so different than how someone with an intact sensory system is experiencing the world. So

00:55:17.000 --> 00:55:20.000
Consider that the things that they're doing

00:55:20.000 --> 00:55:24.000
are purposeful. They make sense to them

00:55:24.000 --> 00:55:37.000
And there's an adaptive reason for it. Of course, not all behaviors are things that are easy to manage in the classroom or in the community, or in your home, but understanding that there's a purpose for them, and then

00:55:37.000 --> 00:55:49.000
working together, and this is where ABA can really come in and finding the right ABA therapist, or the right approach, because there's a lot that are very relationship-based and play-based, to

00:55:49.000 --> 00:55:53.000
Help the child learn a more appropriate

00:55:53.000 --> 00:56:00.000
Are socially expected way to serve that same purpose.

00:56:00.000 --> 00:56:05.000
So, I'm gonna pause here and see if anyone has something to add.

00:56:05.000 --> 00:56:14.000
Yeah, I want to add a couple of things here. I mean, I think Julie just did a really good explanation of why Deaf blind services

00:56:14.000 --> 00:56:20.000
Much better for your child with CHARGE than autism services

00:56:20.000 --> 00:56:28.000
It doesn't mean that some of the interventions developed for kids with autism might not be useful for someone with CHARGE

00:56:28.000 --> 00:56:34.000
But understanding CHARGE from the sensory impairment perspective really gives you a handle on

00:56:34.000 --> 00:56:44.000
What they need and you're not overlooking the medical and how all the different anomalies associated with CHARGE may be interacting

00:56:44.000 --> 00:56:50.000
So, what we need to be advocating for is teachers

00:56:50.000 --> 00:56:57.000
who understand deafblindness, has some training in deafblindness and a deafblind intervenors

00:56:57.000 --> 00:57:07.000
Who can do the kinds of interventions and provide the supports that Julie was talking about, because those can make an amazing difference

00:57:07.000 --> 00:57:17.000
For our kids, and I think one reason why we end up going the autism route is out of desperation, we don't have anybody who understands how to put together a program

00:57:17.000 --> 00:57:23.000
That is uniquely built around the needs of someone with CHARGE syndrome

00:57:23.000 --> 00:57:29.000
So if we could just get that, I think the whole question about going

00:57:29.000 --> 00:57:36.000
Getting an autism diagnosis could disappear. A lot of the psychologists who are wanting to do

00:57:36.000 --> 00:57:49.000
Autism evaluations are people who do not know anything about CHARGE, about sensory impairment, about deaf blindness. And so they're they're flying blind and they're doing

00:57:49.000 --> 00:57:56.000
I mean, Lily did such a nice job of going through the diagnostic criteria and suggesting, look, these

00:57:56.000 --> 00:57:59.000
are easily explainable

00:57:59.000 --> 00:58:01.000
by having CHARGE syndrome

00:58:01.000 --> 00:58:08.000
We don't need to go elsewhere. And that's where the biggest frustration for me has been over the years

00:58:08.000 --> 00:58:13.000
The problem there to get services which might be beneficial

00:58:13.000 --> 00:58:18.000
You have to get the autism label. Just as my perspective.

00:58:18.000 --> 00:58:19.000
Yeah

00:58:19.000 --> 00:58:24.000
Wrong shouldn't be that way, and we need some advocacy around that.

00:58:24.000 --> 00:58:25.000
But let's hear from others. Casey.

00:58:25.000 --> 00:58:42.000
Hey, Tim, yeah, can I jump in on that? I was just sitting here thinking and y'all, we had four or five calls before this and all of us bouncing ideas around. This is so hard to do in one hour of all the things that we think you should know and what could be most helpful to make your family-based decision

00:58:42.000 --> 00:59:02.000
I'm sitting here thinking about all of the other genetic conditions that I've seen that also are having this exact same conversation about is autism a label that should be included there? And ultimately, in some of those conditions, they don't look at all like CHARGE. You know, I'm looking at conditions that are very socially engaged

00:59:02.000 --> 00:59:18.000
They have great imitation behaviors as part of their behavioral phenotype. Kids with Down syndrome, for example, getting labels with autism who typically have stronger communication skills earlier than we see in CHARGE syndrome. All of these are still

00:59:18.000 --> 00:59:35.000
communities that are begging the question, should autism be a part of the label? And I think the reason comes down to what resources do I get access to? And I think Tim just hit that, and Julie did a great job of providing where some other places could be that get resources

00:59:35.000 --> 00:59:56.000
But I also wanted to comment on something that Julie had mentioned and that I saw pop up in the chat too, or like socially acceptable behaviors and kind of teaching those. A good ABA therapist should not be looking to remove any behaviors without building in strong communication

00:59:56.000 --> 01:00:17.000
and replacement skills to be able to request and compensate for a reason we're removing a behavior in the 1st place. So if I'm removing tantrums and you tantrum because you want to be able to tell me what you want. I need to teach you a way to communicate what you want before I take away your tantrum. That's your communication, right?

01:00:17.000 --> 01:00:35.000
And a good therapist should be paying attention to that. Now, might they also try to stop your child from stimming too much in an academic environment where they're missing information? Maybe, but that should be down the road after they've built other systems around

01:00:35.000 --> 01:00:52.000
So they can ensure your child has access to the environment and all of the resources Julie just got done telling you about. So again, I come back to you've got to find the therapist that's willing to listen and understand whether that's ABA, play-based, whatever

01:00:52.000 --> 01:00:55.000
To do this, because I can tell you there's

01:00:55.000 --> 01:01:14.000
Parent-child interaction therapy, there is cognitive behavioral therapy, there's cognitive therapy. None of them know about CHARGE. You've got to teach them all. They all need to learn about your child and your experiences and what's most important to you, and that all of these CHARGE and Autism alike are a very big spectrum of people

01:01:14.000 --> 01:01:37.000
There is really high needs. There could be other psychiatric needs in both of these diagnoses. So try to also keep in mind for some of the questions in the chat that we're trying to speak real broadly about a population that is really hard to like speak broadly about because every person presents with unique needs to that too.

01:01:37.000 --> 01:01:44.000
This is Julie. Casey, I think you hit it on the nose. This is really, really complex.

01:01:44.000 --> 01:01:56.000
And I think all of you that you… everyone here attending knows that. But I am really happy that this topic came up, and that it was so of such high interest

01:01:56.000 --> 01:02:00.000
I'll just say one more thing and then we can go to questions.

01:02:00.000 --> 01:02:05.000
when when I first started presenting about thinking about

01:02:05.000 --> 01:02:11.000
Deaf-blindness and autism, or CHARGE and autism, and then I did a whole second… I have a whole second

01:02:11.000 --> 01:02:13.000
webinar that I do about

01:02:13.000 --> 01:02:25.000
How do you bridge autism specific evidence-based practices with deafblind practices, which again is 60 or 90 minutes. There is a recording somewhere. I can get it to Lourdes so she can have it for resources.

01:02:25.000 --> 01:02:44.000
But it occurred because I was providing technical assistance for a preschooler who was in an autism-based classroom. And there were some things in there that were working okay for her, but there were some other things that they didn't know enough about CHARGE syndrome and they were kind of disregarding some of those needs

01:02:44.000 --> 01:02:59.000
In my opinion. And so what I found, though, is that those individuals, those teachers and those therapists, they were interested in learning more. They didn't know what they didn't know. But once they started learning more, they were interested. So I do think there's hope in that

01:02:59.000 --> 01:03:09.000
area that if it's someone that cares about educating children and cares about your child, they will want to learn more. And the the

01:03:09.000 --> 01:03:22.000
The door I walked in through and I again, I credit my former colleague, Maurice Balot for suggesting this. He said, start with where they're at. Like, think about, so if they have routines in place

01:03:22.000 --> 01:03:39.000
Or they have, they've set up like individual little stations for the kids. Think about how can you then explain to them what a routine needs to look like for a child who's deafblind? What would need to be added? Or what additional visual and auditory and physical supports need to be considered

01:03:39.000 --> 01:03:54.000
If you want them to kind of think about how they're doing some of the prompting, or how they're engaging her, or when they're giving her breaks, talk to them about the sensory regulation. So I kind of thought about where are they at, and then showed them, it's not that different because I think there

01:03:54.000 --> 01:04:02.000
I think deafblind practices benefit so many learners beyond just kids who are deafblind. And I also think there's a lot of really great

01:04:02.000 --> 01:04:07.000
Autism-based practices that benefit children

01:04:07.000 --> 01:04:11.000
So

01:04:11.000 --> 01:04:12.000
That's it.

01:04:12.000 --> 01:04:23.000
Okay. Well, we will go on to questions here, and I want to go one more slide just to show you that we have resources, as Julia mentioned

01:04:23.000 --> 01:04:31.000
And that always screws me up. We got some final thoughts, but I'm going to stop the share here so that we can

01:04:31.000 --> 01:04:36.000
Get to your questions in the chat and other questions that you might have

01:04:36.000 --> 01:04:44.000
So if anybody would like to speak up, Lourdes, is that possible for us to hear them if they speak up and

01:04:44.000 --> 01:05:00.000
We have a few questions already in the chat box, so maybe we could start with grouping those up and answering them because there's a lot of like common topics going on and maybe that could help us

01:05:00.000 --> 01:05:03.000
First, and then we could see if we had time for any audio.

01:05:03.000 --> 01:05:07.000
Okay, if you want to if you want to read us one of the questions

01:05:07.000 --> 01:05:26.000
Yes, we have… I noticed that we have several questions, and you already have covered this in in different ways, understanding that these are two very wide diagnosis and groups of people, but there's some concern in the questions saying that

01:05:26.000 --> 01:05:45.000
Or what if we go with the level of autism to access the ABA or autism related services, but then those professionals are going to miss the opportunities to access for that child's access to communication. So

01:05:45.000 --> 01:06:00.000
How do you make that decision, or how what will be the best course of action or professional or specialty that we could look into that will meet their needs?

01:06:00.000 --> 01:06:07.000
Yeah, Lally, do you want to start with that?

01:06:07.000 --> 01:06:18.000
Yeah, I think it's such a hard one because resources vary so much from state to state and county to county. I think that

01:06:18.000 --> 01:06:25.000
First and foremost, getting in contact with your state DeafBlind project is usually one of the first

01:06:25.000 --> 01:06:27.000
Best steps.

01:06:27.000 --> 01:06:44.000
Because even if they're not able to help directly, they usually can get you connected with local resources that are going to be… give that deafblind and CHARGE-specific support. I would also encourage families to

01:06:44.000 --> 01:06:56.000
Look into the resources that are available through the foundation, so that can include looking at the parent liaison in the state to see if there are

01:06:56.000 --> 01:07:00.000
Other families in your area who have navigated

01:07:00.000 --> 01:07:16.000
These issues specifically in your state. The deaf mind projects typically or a lot of state deafblind projects are able to come in to schools and do trainings as well. So I think that's a really good way to get some of those tailored supports

01:07:16.000 --> 01:07:25.000
And then, I just want to… this kind of connects this and some other comment questions that are in the chat

01:07:25.000 --> 01:07:42.000
At school the label doesn't drive the services that you're getting. The child's needs drive the services. So if anyone is telling you that, oh, well, we need to give them the autism label so that they can go in the autism classroom, that's not true.

01:07:42.000 --> 01:07:54.000
That's not how placement works for education. So if anyone is telling you that they can't do XYZ because they don't have the label that says it, that's just not accurate.

01:07:54.000 --> 01:08:09.000
Once your child qualifies for special education, regardless of the label, that opens up the door to any service that your child needs, not just what the label says. So I just wanted to comment that because I think sometimes schools try to

01:08:09.000 --> 01:08:17.000
Pull one over on families and make it a little bit more complicated than it really is.

01:08:17.000 --> 01:08:21.000
If I could add one thing too here, Lourdes, what I have found

01:08:21.000 --> 01:08:34.000
With families I've worked with in California is… but they often look for is someone on the team, just one person on the team, who's kind of the champion who is kind of going to be the person that is going to

01:08:34.000 --> 01:08:39.000
be the one that's going to remind people. But we can't forget, you

01:08:39.000 --> 01:08:50.000
that she's doing this because she has CHARGE syndrome, or she's doing this because she has this proprioceptive need, or because her vision

01:08:50.000 --> 01:09:05.000
works like this. So it might not be everybody on the team who gets it, but it does help. I think it helps families to know that they're not the person that has to keep being the one that has to keep calling another meeting to remind people and giving them all the information.

01:09:05.000 --> 01:09:21.000
So look for… find out who's the one person, and the champion… they might not even recognize that they're the champion on the team, but they're the person that's interested. Yeah, or it might be the person that really understands their vision needs

01:09:21.000 --> 01:09:32.000
But because you can see they understand that, then you can start to give them the information that they also need to know about their other sensory needs and their hearing needs and things like that.

01:09:32.000 --> 01:09:43.000
You know, the medical model likes labels. They like diagnoses because of the belief that in order to treat something, you have to have a diagnosis

01:09:43.000 --> 01:09:47.000
I think there's some serious problems with the medical model

01:09:47.000 --> 01:09:56.000
Especially in the area of psychiatric diagnoses, because they're rare to find a person who's purely one thing

01:09:56.000 --> 01:10:12.000
And that's why so many kids with CHARGE not only get CHARGE plus autism, plus obsessive compulsive disorder plus ADHD, and so they have all these… all these things added on, thinking that that helps us better understand

01:10:12.000 --> 01:10:20.000
The individual and how to intervene with them, and I would challenge that. I think, you know, somebody who understands CHARGE

01:10:20.000 --> 01:10:32.000
can understand many of the other intervention kinds of things that Julie shared, especially with the support of deafblind Project and others. So I

01:10:32.000 --> 01:10:45.000
I really resist the idea of I've said many times, charge is enough. You have a CHARGE diagnosis that encompasses so many different kinds of things. It's very complex. Let's move forward and find those champions and

01:10:45.000 --> 01:10:59.000
you know, find ways to support the individual

01:10:59.000 --> 01:11:00.000
Yeah.

01:11:00.000 --> 01:11:05.000
Tim I just circled on my notes for everybody skills like find the person who's willing to teach the thing you need, not what the label is, because the label actually doesn't help us do anything. And I'll argue that for my individuals with autism

01:11:05.000 --> 01:11:22.000
An Autism label doesn't help me teach a kid functional communication. It doesn't help me decide if they also have anxiety or depression as an adolescent. Autism by itself didn't do any of that. It just gave me a frame of reference around what presenting needs might be there

01:11:22.000 --> 01:11:34.000
But it does nothing to teach me the intervention, just the same as saying somebody's depressed doesn't give me the intervention of what to do next. And so finding the resources that help you get to the intervention

01:11:34.000 --> 01:11:48.000
Sometimes we forget to sit back as a team and say, what are we trying to get to? What skills do we need? What are the goals moving forward? And I think that'll help drive some of your individual decisions.

01:11:48.000 --> 01:11:51.000
Lourdes, another question.

01:11:51.000 --> 01:12:07.000
Yes, we have a question regarding transition. Is there a thought process around a more successful way of transitioning this family seeing their 17-year-old son get stuck or frozen

01:12:07.000 --> 01:12:16.000
In the first instinct of the teacher is to focus on the frozen state, and she feels that that worsens the situation

01:12:16.000 --> 01:12:21.000
of the time being stuck

01:12:21.000 --> 01:12:26.000
So, helping identify

01:12:26.000 --> 01:12:39.000
Ways that they could kind of like ease to that transition without just focusing on the end product of whatever they see.

01:12:39.000 --> 01:12:40.000
This is a tough one because

01:12:40.000 --> 01:12:43.000
As Julie said, transitioning is really difficult. I'm sorry, Casey, go ahead.

01:12:43.000 --> 01:13:09.000
Yeah, sorry. This is a tough one because transitions can be very difficult and it's hard to know what's causing the get stuck kind of part of this example, but in all of us operate in a world where we understand the schedule, predictability and what comes next, we work better with, right? All day today, I knew I had this on my calendar and I needed to prepare and be ready to do this.

01:13:09.000 --> 01:13:25.000
Sometimes we take away those things from people with CHARGE or any other label. We take away the opportunity to know what the expectations are that are coming next. And so if we're preparing for transitions, we need to know that those transitions are coming

01:13:25.000 --> 01:13:40.000
when they might be coming. And in some cases in charge, we might get a little stuck because you told me I was going to do X, Y, and then we were going to transition to Z, but I'm not done with X yet, and you're making me go to Z

01:13:40.000 --> 01:13:41.000
Yeah.

01:13:41.000 --> 01:13:58.000
Why are we doing that? And so we have to think about the interventions that help us know how much time can we allocate to something? When is it okay to finish a project that if we don't finish, we still have to transition at this time no matter what

01:13:58.000 --> 01:14:14.000
We can come back to those things, but when we don't communicate all of that very clearly to the individual, they're gonna get stuck. It's going to increase anxiety in the situation. And then you might see frustration because you're changing the rules

01:14:14.000 --> 01:14:23.000
And it's not because I'm adamant that the rules are the same. I don't know what my expectations are anymore, and that's got taken away. So

01:14:23.000 --> 01:14:38.000
Thinking about what works for that individual. Is it a visual schedule? Is it a timer? Is it reminders of the expectations as they're coming up? But in our resources, I think you're going to find a lot of that to be really helpful

01:14:38.000 --> 01:14:56.000
But the processing time Julie talked about earlier is also really critical. I need to kind of take it all in before I maybe give the response back. But now you're still feeding me more information for that transition

01:14:56.000 --> 01:15:06.000
Yeah, yeah

01:15:06.000 --> 01:15:07.000
Exactly. Yeah.

01:15:07.000 --> 01:15:13.000
And I've not computed all of that yet. And keep in mind, my vision and hearing are impacted, so who knows if I got all of what you said the first time anyways, right? And so all of those things are really important. I can't preach enough that patience that we need to have

01:15:13.000 --> 01:15:26.000
to really think about how this individual is engaging with you and their environment to be successful and what we need to do to find the way that that access makes the most sense.

01:15:26.000 --> 01:15:27.000
All right

01:15:27.000 --> 01:15:28.000
Yep.

01:15:28.000 --> 01:15:39.000
If I could just add one thing too, is I think this idea of being frozen. That's how it looks to the person that says that person's frozen, but there is a reason

01:15:39.000 --> 01:15:42.000
The person is doing that.

01:15:42.000 --> 01:15:48.000
And so you have to go back to that why. So it could be that they're still processing

01:15:48.000 --> 01:15:52.000
It could be that there's some other

01:15:52.000 --> 01:16:07.000
Sensory need in their body, something that's more important than listening to what you're saying right now and going to do. Why now? It could be that this person is looking for more control

01:16:07.000 --> 01:16:21.000
and kind of being in charge of what their schedule is. So I think there's… you always have to stop and really not just think that's what this looks like. I'm going to call it that they're frozen, they're not doing the thing that they're supposed to do. But think about, okay, what are they doing?

01:16:21.000 --> 01:16:25.000
And what potentially does that mean? What is that communicating?

01:16:25.000 --> 01:16:29.000
Yeah, absolutely. Next one, Lawrence

01:16:29.000 --> 01:16:47.000
Alright, I have… we have several questions related to another layer of challenges that might be added to someone that already has charge, and there's some observation of autistic-like behaviors

01:16:47.000 --> 01:17:04.000
then you bring in the mental health issues that that individual might have. We have several parents commenting on that a lot of times there's like a misunderstanding on the providers working with the child

01:17:04.000 --> 01:17:19.000
Not knowing when their behaviors are stemming from. Is it CH related? Is it, you know, related to maybe sensory or the autism spectrum, or are we just looking at a mental health

01:17:19.000 --> 01:17:25.000
situation, how… how can you help professionals identify that?

01:17:25.000 --> 01:17:29.000
Yeah, we know we are humans first.

01:17:29.000 --> 01:17:32.000
And as all humans develop

01:17:32.000 --> 01:17:49.000
Depending on their culture and environment, they do kinds of things. For example, adolescents are often very rebellious. But if our kid with CHARG who's an adolescent rebuilds, we think there must be another diagnosis we need to add on because they shouldn't be, of course they should be

01:17:49.000 --> 01:18:05.000
Well, go through the same kinds of experiences, and I think sometimes we're way too quick to assume that a diagnosis is going to be useful in those situations or mental health therapy

01:18:05.000 --> 01:18:17.000
You know, as Julie made reference to, you know, with the behavioral triangle, and there's an article in the references about this pain, sensory issues and anxiety are three big problems

01:18:17.000 --> 01:18:29.000
that our kids with CHARGE are experiencing, and their solutions for coping with pain, sensory issues and anxiety, particularly when the world doesn't understand that's what they're going through

01:18:29.000 --> 01:18:44.000
can be unusual and challenging for us to deal with, so we do always need to step back and say, I wonder why the person has chosen this behavior, and not assume that, oh, they're gauging that behavior because they have X, Y, or Z

01:18:44.000 --> 01:18:54.000
No, why have they chosen that behavior to solve the problem that they're experiencing?

01:18:54.000 --> 01:19:09.000
Yeah, and I'll say, I see that there's several questions about self-interest behaviors and some aggressive behaviors, and these are really hard to answer in the context of chats like this because there are

01:19:09.000 --> 01:19:31.000
Lawrence, you asked, is it charged? Is it sensory, is it mental health? Which which one of these things? And then Tim throws in, is it pain? Is it anxiety? Is it discomfort in this situation? These are all very individualized reasons why behavioral assessments have even been developed in the first place, because if you can't tell us

01:19:31.000 --> 01:19:54.000
Why something like SIB is occurring, and in most cases, people who engage in self-injurious behaviors rarely do that if they have the communication to tell you what their wants and needs and expectations are. And so I again, that behavior is communication. The challenge is for us to figure out what it is trying to communicate, which is why we don't want to get rid of it

01:19:54.000 --> 01:20:10.000
Without better understanding what it is and being able to move forward. But I do recognize those are very significant needs in our community and they're very challenging and it's very frustrating to find providers who understand

01:20:10.000 --> 01:20:30.000
And that unfortunately isn't just in our CHARGE syndrome community, it's with almost every other diagnosis for developmental disabilities that I work with across our institute and our families have interaction with. So again, just like we need to educate the cardiologist about the uniqueness of CHARGE syndrome

01:20:30.000 --> 01:20:49.000
You need to educate your provider about the uniquenesses that are important to know about your child or yourself as an individual with CHARGE, and take those resources on the foundation's page to help you. But we're all here to be a support and helping those providers understand that too.

01:20:49.000 --> 01:20:55.000
Yeah. Lily, you must encounter this a lot too in your work.

01:20:55.000 --> 01:21:12.000
Yeah, I was just gonna add, I think that I imagine sometimes as family members, it can be difficult to hear people say like, oh yeah, what you're experiencing, that's really common in charge and almost like it's an explanation that

01:21:12.000 --> 01:21:30.000
That you're that we almost expect to see this, but then that doesn't it helps to a certain degree because it helps us to kind of understand the behavior and know that it's it makes it make a little bit more sense, but it doesn't always make it any

01:21:30.000 --> 01:21:46.000
easier to then manage. And so I just wanted to acknowledge that can be really challenging. And I think it's important to also recognize that a concept called diagnostic overshadowing, where we're attributing

01:21:46.000 --> 01:21:49.000
Like, all these different things to

01:21:49.000 --> 01:22:04.000
One diagnosis of CHARGE, and I think a lot of what we talk about, like, you can make the argument that this is related to CHARGE, and we can explain what's going on, and sometimes there's more supports that are still needed

01:22:04.000 --> 01:22:06.000
And

01:22:06.000 --> 01:22:23.000
But then it's hard to find a good person to help with that. So I think that as family members, you're kind of striking this balance of what are we just understanding and accepting versus like what is worth pushing through to then go get more

01:22:23.000 --> 01:22:27.000
More support for. And that's a really hard balance to strike.

01:22:27.000 --> 01:22:29.000
Yep, yep

01:22:29.000 --> 01:22:49.000
Lily, I'm so glad you said that because it prompted me to think of, I get the pleasure to work with so many of the adults with CHARGE and they've been really open in sharing with me over the years and they're quick to remind me not everything is charged, Casey. And I say, gosh, you're right. It is not everything is charged or autism or whatever label we want to get it

01:22:49.000 --> 01:23:12.000
Like Tim said, teenagers go through angst. You're hitting puberty? You can expect behaviors to increase. That's just what happens in development, right? As you hit major life milestones, anxiety increases. Those are all normal things, you know. I haven't met yet a college student who's about to leave, who's not a little bit anxious about what's going to happen after graduation, right

01:23:12.000 --> 01:23:28.000
or exiting high school or having a new teacher, these are all things that don't have to be attributed to CHARGE, but are just the product of the change that's happening and in the environment. And I appreciate Lily for prompting me to remember that, because

01:23:28.000 --> 01:23:48.000
Our adults have done a great job of discussing that, but that also means when we talk about diagnoses piled on, it also means that you can have CHARGE and have anxiety and have depression, and have other mental health needs that need to be addressed and have intervention for

01:23:48.000 --> 01:24:04.000
Those things don't come off the table because we have CHARGE syndrome. I think what we're trying to help you all understand is what is the label helping you get and what is the ultimate resource or outcome that you can have for that

01:24:04.000 --> 01:24:21.000
And as a family, sometimes you have to make those decisions individually as you think through that. So we do really hope that tonight was helpful in kind of putting a different frame of reference from all of our different experiences and recognizing there's no perfect answer to most of these things

01:24:21.000 --> 01:24:25.000
Yeah, I think we got time for at least one more. Lourdes, if you've got something there.

01:24:25.000 --> 01:24:43.000
I think we have, oh, we just have one more. She says, these behaviors are not her choice. They happen outside of her will. If she was able to choose how her mind or body reacted, she would not engage in this episode. So it's pretty much going back to

01:24:43.000 --> 01:24:58.000
There's not a simple answer that would encompass all of these behaviors, you know. Everything is complex, and everything is very individual changes from individual to individual. So that's something else that

01:24:58.000 --> 01:25:14.000
We definitely want to keep in mind. So you have done an amazing job sharing this information with our families. We all recommend that you do share this recording with your professionals, with your team

01:25:14.000 --> 01:25:29.000
So they could have a better idea of all the different possibilities that might be impacting your student, your child's, your individual's behaviors and like the team said, we're going to be sharing additional resources

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For you to also refer back to. So team, do you have any last thoughts or things that you would like to share before we we finish our webinar

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I'm so pleased to be able to answer all the questions that are out there and make everything clear because of course we can't do that. This is such a complicated topic. And there's no way that we can we can

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provide clarity, because we don't necessarily have it entirely for ourselves, but I want to thank Julie Lelly and Casey for being here and sharing their expertise, and I've just learned a lot just from listening to the 3 of them

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Thank you. I'm really proud of Casey and Lily, because they're my former students. But but I love Julie, too. So it's all good. So thanks, Lourdes, for the opportunity to do this.

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And

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No, thank you all for spending the time with us, and we hope to see you again. There's a lot of more questions and things that we could continue to explore about this.

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And Lourdes, just reminder to everybody your state, every state and territory has a deafblind project. And if you feel like you still have questions that are more specific, you can email me. I'm happy to answer questions from any state.

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Yeah

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Perfect. Thank you so much. And we all hope to see you all next month at our next Ask the Expert. Remember that we're going to be sharing the recording in our website, and we're going to also share the

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Transcription and the links to the recordings with everybody that register for today. So thank you so much for joining us, and we hope you have a wonderful evening.

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Thank you.

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Bye bye.