Dr. Sharp: [00:00:00] Hello, everyone. Welcome to The Testing Psychologist podcast, the podcast where we talk all about the business and practice of psychological and neuropsychological assessment. I’m your host, Dr. Jeremy Sharp, licensed psychologist, group practice owner, and private practice coach.
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Hey everyone. Welcome back. I am here with you for part two of the assessment for visually impaired kids. If you didn’t catch part one, you have to go back and listen to part one. It was just information-packed and it lays a lot of groundwork for the material that we cover today. [00:01:00] If you don’t listen to part one, I don’t know that you’d be completely lost but it will definitely help provide some context.
So I am not going to do full introductions of each of my five guests this week but you can check those out in the show notes or go back to part one and catch those full biographies. These fantastic women just have an incredible wealth of knowledge and life experience. I am so grateful to have them again for another hour or so.
I don’t want to delay any further. Let’s get to my conversation with May Nguyen, Stephanie Herlich, Dr. Terese Pawletko, Dr. Marnee Loftin, and Dr. Carol Evans.[00:02:00] All right y’all. Hey, welcome back to part two of our series on assessment with visually impaired kids. If you did not catch part one, definitely go back and check that out because we are building upon that information that we talked about in the first episode. Let’s do a quick introduction again, just to orient the audience to each of your voices. May, you want to go first?
May: All right, thanks. My name is May Nguyen. I’m a licensed educational psychologist at the California School for the Blind on the assessment team. I work with Stephanie Herlich who’s here with me today. I’m glad she joined me.
Dr. Sharp: Great, yes. Stephanie.
Stephanie: Hi everybody. I’m Stephanie Herlich. I’m a teacher of the visually impaired and orientation and mobility specialists and the Assessment Center Coordinator of the California [00:03:00] School for the Blind assessment team.
Dr. Sharp: Very nice. I actually meant to ask you this last time, Stephanie. How does a mobility coordinator differ from an occupational therapist, for example?
Stephanie: That’s a really good question. An orientation and mobility specialist is its own credential. It’s specifically teaching students who are blind and visually impaired orientation skills. So everything from body movement, body awareness, concept awareness, to travel skills which is more than the mobility part- so using a white cane, street crossing, safety skills, all of that. So specifically for students with visual impairments.
Dr. Sharp: Fantastic.
Stephanie: And our students will likely also have an OT quite possibly.
Dr. Sharp: Sure. Great. Thanks for indulging that, I should have asked in the previous episode. [00:04:00] Let’s see. We’ll go in the same order as last time. Carol.
Dr. Carol: Hey, I’m Carol Evans and I taught visually impaired students for a number of years. And when other teachers of the visually impaired in our state we’re expressing disappointment with the evaluations being done by school psychologists who really had no background in vision, I said, well, what needs to happen is somebody who understands visual impairment needs to become a school psychologist. And everybody looked at me and that’s what I did. So about equal parts of my career in teaching visually impaired and school psychology.
Dr. Sharp: There you go. It’s a nice combination. Let’s see. Terese.
Dr. Terese: Hi, I’m Dr. Terese Pawletko and I, like Carol, I’m a former teacher of the visually impaired. I did that for five years before going onto graduate school. I [00:05:00] have a background in school psychology and pediatrics psychology, and I am working in private practice in New England and beyond
Dr. Sharp: Fantastic. Thanks. Marnee, bring us on.
Marnee: Okay. I’m Marnee Loftin. I’m one of the psychologists who came to The Texas School for the Blind and knew nothing about vision. My background was not even in school psychology. It was in clinical. So I’ve had quite a learning curve thanks to some very tolerant teachers for the visually impaired. I retired from the Texas School about eight years ago, and I still do a little bit of consultant work. Largely, what I’m doing is work plots trying to help psychologists have some idea of what they need to learn to perform the best possible evaluations on these kids.
Dr. Sharp: Great. We have such an amazing team here to be talking through these concerns. So, thank you all for being here again. [00:06:00] I’m excited for part two. So we’re really going to dive into specific overlap or comorbidities with other mental health concerns or learning concerns and visual impairment. So I’m excited about that.
Carol, I think you’re going to start us off, maybe fill in a little information that we missed last time, and then transition us to ways to interpret our data.
Dr. Carol: Okay. Thank you so much. Children who are blind or who have very low vision have a greater challenge in acquiring language than children who are sighted. Children want to learn the names of things. I can remember my six-month-old baby, when I’d carry her around the apartment, she would look at things and then look at me and look at something and [00:07:00] look at me. And I felt like she was asking me what it was. So I told her. I would say that’s a door, this is a bookshelf, this is a map.
My husband had a carved wooden bear from Hokkaido, Japan. And I said that’s the bear. We haven’t had that on the shelves in a long time. Anyway, the next day when I would say, where is the…? She would look at that thing. She hadn’t learned a point yet but she would look at that thing and she had it down. So that’s when I realized, you have to tell kids when you’re getting them dressed, we’re putting shoes on the right foot and those kinds of things so that they understand that things have names, that miracle moment in Miracle Worker where Helen Keller [00:08:00] finally gets the idea that things have names.
Dr. Sharp: Yeah. I appreciate you bringing that backup. It makes intuitive sense that we develop language from sight but it’s nice that we got to reinforce that kids with visual impairments, that’s just another factor that might contribute to difficulty in learning the language.
Dr. Carol: And it all has to be brought to their body. They have to touch things. A miniature car may not represent a real car to a child who has the idea of a car is a sense of motion and getting to grandma’s house. Unless they’ve explored the car inside out, you don’t know if you’re using a miniature to represent a real thing, because miniatures don’t necessarily represent real things the way pictures do for sighted children. So they need all [00:09:00] that experience.
Dr. Sharp: Right. So I imagine it’s just extra important for caregivers or interventionists or whomever to go that extra mile to make things concrete, make things tactical, describe what’s happening, narrate life. Is that fair?
Dr. Carol: Yes, it is.
Dr. Sharp: I appreciate you circling back and making sure to reinforce that information. We talked a bit about learning and development last time. So that’s a crucial piece of information.
So maybe we do a little bit of a left turn into interpreting some of our assessment data. I think that’s where we’re going today primarily. So feel free to take that and run with it.
Dr. Carol: Okay. Well, we were also going to talk about caveats for a report. I think that probably should [00:10:00] come first.
Dr. Sharp: Sure, let’s do it.
Dr. Carol: Something that I have used in reports is to say this, precise determination of cognitive or academic ability levels of individuals with visual impairments is particularly challenging. It is necessary to interpret the findings in this report with caution for two reasons: the instruments used were standardized on a sighted population and certain adaptive procedures were required in administration to allow for access to the materials and examples of those, and they ought to be in the report, enlargement or magnification, braille, tactual representations or scoring without bonus points for rapid completion.
I think the term for processing [00:11:00] speed ought to be changed to visual-motor speed because a lot of people interpret that as the speed of thinking, and that has nothing to do with what you’re doing. I’ve had people interpret slow reading fluency as a result of slow processing speed. That doesn’t apply to a student with a severe vision impairment.
Dr. Sharp: Sure. I was racking my brain thinking about measures that we use, measures of processing speed that don’t have a visual component. I know they’re out there, but they’re certainly not commonplace by any means.
Dr. Carol: That would be a good thing to find out.
Dr. Sharp: Yeah. While we’re on that topic, are there any that come to mind that you know of? Anyone could jump in of course, but any measures that don’t rely on visual input?[00:12:00] May: Instead of doing a paper-pencil type of task, you could tap into some measures of lenses with ideations fluency like with long-term retrieval. With the NEPSY-II, there’s word generation. With the WJ IV in the Phonological Processing subtests, there is a component of another word generation type of task. The D-KEFS- there’s a verbal fluency task.
So there are ways to pull to. And there’s no clean measure of where you’re just tapping into one thing, you’re always going to have a little mix of different processing areas, but I feel that might be the way to go when you’re looking at a fluency type of measure for a student with visual impairment that’s more oral or auditory, at least.
Marnee: There is a neuropsychologist in [00:13:00] Austin who has worked in the field of visual impairment for a number of years, Dr. Jack G. Dial. He has developed the cognitive tests for the blind which is used pretty extensively in the rehab program that has got some nice measures of processing skills. The only problem is, it starts with children the age of 15. So very few of us would be, we just wouldn’t be testing kits for the first time. And it’s a very expensive test too, but just to throw it out there. That is something that he has used. And they’ve developed some pretty nice norms on it.
Dr. Sharp: That’s great. I’ll put that in the show notes. I’m going to do a little more research on that myself. Thanks.
Carol, I wonder, are there other qualitative factors that we need to take into account, [00:14:00] just big picture to interpret the data from an assessment we need to be aware of?
Dr. Carol: Of course. I think we all agree that a full-scale IQ is inappropriate.
Dr. Sharp: Yeah. Lots of nods.
Dr.Carol: I tested one student who had retinitis pigmentosa 1 in my career whose performance or visual-spatial, whatever we were calling it then, was higher than his verbal. And that’s an anomaly. That’s not something you see every day. So I’ll give you some examples of qualitative interpretation. I think sometimes it used to be that picture completion was the first test you gave, right?
Dr. Sharp: Right.
Dr. Carol: It’s not even part of the core anymore, but I think it would be useful as a screening device to determine whether you need to even continue [00:15:00] to attempt to administer things with visual stimuli.
For example, Arthur persisted in calling the sample item on the WISC-V picture completion a banana. It’s really a pencil because of the color. He was unable to identify correctly any other pictures on this or any of the other subtests. He was unable to identify objects in my office by sight but was able to identify all of them by touch. This finding suggests a profound limitation in functional vision and supports the functional vision and learning media assessments, which stated that touches is primary learning channel. It also seems to explain why Arthur is currently having great difficulty in learning to read print.
Dr. Sharp: I like that. I love these concrete examples
Dr. Carol: Here’s another one. Carlos correctly completed some of the [00:16:00] more difficult items on the WISC-V block design subtests but required about 50% more time than the standard for sighted children his age. These results suggest that he can do visual construction tasks accurately when given adequate time to complete the work.
Dr. Sharp: Sure.
Dr. Carol: Here’s another one. Although Laura’s performance on the WISC-V symbol search and coding subtests was accurate, she worked slowly and very carefully on these subtests of processing speed. Laura has nystagmus- rapid involuntary movement of the eyes, and photophobia-extreme response to light associated with albinism. And these typically cause her to need more time for detailed visual work.
Dr. Sharp: That’s great.
Dr. Carol: Do you want any more or should we…?
Dr. Sharp: I think these are good. It’s funny. We were talking about the [00:17:00] episode transcriptions before we started to record. This is a great reason to have transcriptions in the episodes. If folks are listening and want to get these statements verbatim, adapt them and use them, the transcript is a great place to do that.
Dr.Carol: I have one more that I think is important.
Dr. Sharp: Sure.
Dr. Carol: Despite his severe visual loss, Leon completed all of the WISC-V block design items within the time limits. To accommodate for his need to scan to see all the blocks in the pictures, these were scored without bonus points awarded for rapid completion. Leon stated that he loves puzzles and works on them for relaxation. The great thing about this kid is that he had about a 25% visual field in one eye. He should have been right-handed, but because he could only see that, he became left-handed and he reversed some letters, but he got the highest score possible on those.
Dr. Sharp: That’s incredible.Yeah. As we just start talking about how to interpret data, it makes me think of two episodes that I’ve done in the past just on the basic non-standard administration. It seems like that’s just the theme here is, how do we think outside the box and from the very get-go not really get roped into those strict guard rails for administering and interpreting this data. I like this conversation and where it’s going. So, be flexible.
Should we [00:19:00] transition to the learning disorder realm or Carol, is there anything more to say just in terms of general qualitative ways that we should be looking at this data?
Dr. Carol: Well, I think there’s another one here that might be useful. And of course, people are welcome to get the rest of them by watching the presentation that Terese and I did last May for the American Printing House. They could get the rest of them. Here’s one that I think would be important.
Olivia was unable to respond accurately to items on the WISC-V picture concept subtests when wearing her glasses. She was able to see the details of the pictures when items were presented on the video magnifier. She also stated that she finds it easier to read fluently when using the machine.
Dr. Sharp: Yes, thanks. I think [00:20:00] people love these concrete examples. I’m glad that you brought those and shared those with us. The webinars that you mentioned will be linked in the show notes too. So folks can go check that out if they would like. So, let’s see. Should we transition to the learning disorder realm and talk about more specific methods?
Marnee: I was feeling a little self-conscious about doing something on learning disabilities or disorders. I’m not a teacher, as I said, I had no training in VI, so it’s all been on-the-job training and a lot of reading to get the knowledge that I’ll be sharing today. I think one of the first things I’d like to talk about is the whole issue of under-identification with learning disabilities and children who are visually impaired. If you look at the statistics nationally, [00:21:00] about 14% of children in special education are served…
Let me back up. Nationally, about 18% of children (between 14% and 18%) are served in special education programs in public schools. 80% of those kids are served because of a reading disability. So, it’s a high incidence issue with children who have vision, and it’s almost never identified, any toppers of special learning need with children who are visually impaired.
The estimates that we do as the group indicate that we would expect about 14% to 45% of kids to have some type of an additional learning disability and visual impairment. [00:22:00] They’re at high risk because of the frequent neurological involvement. And yet it is very infrequently determined.
I don’t have records nationally, but in the state of Texas, we’ve got a pretty high number of children who are visually impaired. It sits right around 9,000 that we serve throughout the state. And I think the numbers that I’ve found that I’m hoping that they’re wrong, that only about 200 of those children are identified as having a specific learning disability and a large percentage of those children were from the Texas School for the Blind. Kids that are really struggling tend to be referred there, and we certainly are more comfortable in identifying those kids.
Most typically, I think people see the visual impairment as the sole issue- the reason that they can’t read, and there’s almost always an overwhelming [00:23:00] urge to push them toward learning braille. You would do better if you learn braille. You’d be able to read better if you learn braille. And as those of us that work know, that’s just not the case. For example, readers in print become struggling readers in braille. There’s no magic cure.
Carol and I have done this dyslexia project for the National Center of Literacy, which number one was a lot worse than we thought it was going to be. And number two, it was good because it really helped us do some digging and get some more recent research into our brains. I was fascinated because there’s now a lot of interventions about brain energy studies. They have gone in, and they have looked at brain images of children who had vision and are reading as compared to children with no vision or braille readers. And sometimes [00:24:00] they’ve never had vision.
And what they find is that the same areas of the brain, whether in those children with or without vision, even for those kids who have never had any vision. So what that tells us is that it’s probably a neurological basis to the learning disabilities and that it’s separate and not at all related necessarily to the visual impairment.
I have often wondered what the reasons are that people are so very hesitant about identifying a specific learning disability with kids who are visually impaired. I would agree that I think it’s almost impossible to identify it with kids in the area of math- any of those math areas because they’re pretty infrequently related to visual-spatial concepts, which are always going to be difficult. It’s also, I think very difficultly with [00:25:00] writing because there are some aspects of vision that just[…] the ability to read punctuation signs, handwriting, speed of handwriting, et cetera. But in general, the reading we would expect if they have the appropriate intervention is that they’re going to be reading on grade level just like any other child.
What we know, and I may be giving out a little bit more background, but I think if nothing else, it gives you the confidence to do these evaluations. We used to think that kids had a little bit different way of learning phonics if they were visually impaired. We have found that that’s not the case. They learn phonics essentially the same way at the same speed as sighted children.
We used to believe that the initial word recognition was different, and that’s really [00:26:00] not the case either. They will learn some words in a different order. So the scope and sequence of reading are not the same with children who are visually impaired, but they’re going to end up… at the end of 2nd grade, they should be reading just about like the other children. If they’re not, there’s something else going on. [00:26:22] [crosstalk]
Dr. Sharp: Marnee, Can I ask you a question?
Marnee: … when children get to be about in the 3rd or 4th grade. And so what we see is that children who are visually impaired become much less fluent in their reading than a child with normal vision. The child with a visual impairment has to do all sorts of other things in addition to reading.
So one of the few things I can say with some degree of confidence and hope other people nod their head is that they’re always wanting to be slower readers. There’s just no way that they’re going to be able to read as rapidly. [00:27:00] So you end up with kids that are supplementing the material with audio. They are having their assignments with speech, but all things considered, kids up until about the age of 3rd grade should be reading just like their peers. If they’re not, there’s something else going on.
Again, when I stop and try to think about what are the reasons that people are so hesitant, I think one of them is what we just talked about- the fact that we really don’t know how children should learn how to read if they’re visually impaired unless you happen to work in this team and field.
But the primary reason is something we can all preach about forever. People somehow read the IDEA criteria, they read their state criteria, and they say that in order to determine this child has a learning disability, you have to rule out vision as the cause. [00:28:00] They create their own definition and they hang tight to it. And in fact, what it says, as we all know is that you have to determine that it’s not the primary cause of the difficulties in reading.
So what I have suggested and I have done a lot of workshops on is, how do you determine that it’s not the primary cause? What kind of data do you have to gather before you go in and evaluate? How do you process in your own mind? How do you use the test and determine it?
We probably have talked about this more than any of y’all care to hear, but one of the things that you need to know is that there’s not a real easy way that you’re going to do a learning disorder evaluation for a child who is visually impaired. It takes a lot more time. There are no neat little formulas where you plug it into your [00:29:00] computer. You’re going to have to do some real leg work to do a quality evaluation.
The first thing that I do when I start looking at these evaluations is that I ask the teacher to sit down and be very specific as to what the concerns are. Oftentimes, the real concern is that they’re not doing their homework and they’re concerned about the slow rate of learning. So, I’ve really tried to sit down and talk with them about what is going on.
The next thing I do is to sit in the classroom, sit in different environments and observe what’s going on with the child. There are some wonderful checklists out there to try to give you some structure to do the observations. I try to look at things like organizational skills, attention, acting out behaviors, all of those things [00:30:00] that you would look at with other children who have vision, but it’s important to really spend an increased amount of time in the classroom with these children.
One of the things that I really tried to look at is how are the organizational skills of these children who have been referred for these types of evaluations? A lot of times what I see is children who are very disorganized. If they do their homework, they can’t find their homework to turn it in. They can’t find all of the adaptive devices that they have. So I look at that first.
The next thing I look at is avoidant behavior. To me, one of the real behavioral criteria for looking at learning disabilities are these children that are so cooperative but will avoid doing a reading test. They’ll do just about [00:31:00] anything to avoid reading aloud, reading orally with any other person. I think those are things that I looked at. I always get work samples in the classroom so that I can sit down and look at what their work looks like over a period of time, rather than in that brief time that I’m sitting down and evaluating them.
The next thing is a number of interviews after I’ve started gathering the data. I use a lot of checklists to ask the teachers to complete as well as parents to see where some of the problems might lie. One of the things that I like a lot is the BRIEF-2. And somebody can help me with that is. So Writing Inventory of Executive Functioning. It has a version for the parent, for the teacher, and for the student.
Again, that tells me a lot [00:32:00] about what is at the core of some of these problems. I will almost always run a behavioral inventory. The BASC-3 is one that I use extensively. It’s one that doesn’t have a lot of bias towards students who are visually impaired. So that’s one that I will use when I’m doing an IV evaluation or one of the LD evaluations.
After I’ve done all of this, then I start reviewing the records to ascertain that these kids are kids that have had a sure and clear intervention. The VI teacher has been there. The VI teacher has not been out on leave themselves. And most importantly, this is a child who’s been healthy enough to learn. You’ll see a lot of kids in our caseloads that have really serious medical problems that have been in and out of school. [00:33:00] So being certain that they have, in fact, had access to their education.
Then I start doing the evaluation. We are lucky because one of the better tests for doing educational evaluations is the Woodcock Test of Achievement. The fifth version is now available through the American Printing House. And I think we touched upon that briefly the other day, and it’s probably as good an instrument as you will find to do an educational evaluation.
If you’re not a teacher of the visually impaired, I would discourage you from sitting down and doing the braille version. I know enough braille to get myself into trouble. I could administer it with some degree of skill, but I have troubles interpreting. So if I have ended up in a situation where I’m doing part of it by myself, I always record it so I can go [00:34:00] back and listen again to see exactly what the error sounds like.
I, again, will take work samples of the particular area that we’re looking at. I do a lot of informal inventories that may be available through APA or sometimes things that I learned. Those will very considerably based upon the age of the students. If you are testing a younger child, I think the Boehm Test of Basic Concepts is a great instrument to see where they really are.
I do different tests of phonemic awareness that you administer orally. So there’s no bias. You can do parts of the Woodcock to see how children are decoding the phonemic sounds themselves. When I get [00:35:00] into testing an older child, I’m very interested in determining how they use audio materials. So I will do some reading. I will have them listen to texts that I have taped, and I will try to vary between scientific, historical, just playing literature, ask them questions that are inferential as well as just factual based. And it’s again, very informal, but it typically gives me good information.
Based upon all of that, I sit down and really do a clinical analysis. There’s not a whole lot of statistical things that you can do with these children. But I think we’ve got a great deal of data that we can use to make a determination of what is going on. That’s maybe more than you ever wanted, but that’s what I got.
Dr. Sharp: No, that’s great. It makes me think of the [00:36:00] innocent until proven guilty paradigm. You really do have a lot of sort of like burden of proof to show that any learning issues aren’t due to visual impairment, and so much work goes into that process before you even move to do the testing itself.
Marnee: Well, and one of the things that have always fascinated me and the data from Texas really shows this to be true, people are pretty quick to slap a label of ID on a child whose scores are in that borderline range. They are extremely eager to determine that the child has autism in a certain form. That is the thing that we used to see most commonly in young children who were coming in. And I’m sure Terese will talk about all of the problems with that. But for some reason, specific learning disability, all we always want to do is change the [00:37:00] media and that’ll work fine. And Stephanie can tell us it does not work fine.
Dr. Sharp: Do you want to tell us about that, Stephanie? Is it okay, is it not?
Stephanie: I so agree. I see it so often. Oh, this child can’t read, teach them braille. And the same problem they’re going to have reading print, they’re going to have the same issue reading braille. It’s not going to solve everything. And we see this over and over again.
Dr. Sharp: Right. I think that’s important to highlight. Carol, I know you want to jump in. Just hammer that out is that these reading problems are going to be there whatever the medium is, right? It’s kind of what we know about dyslexia and reading issues in general, is it’s there.
Stephanie: Yeah, I can even tell you, we have two cases right now of students whose, and I’ve seen it before where [00:38:00] families are insisting that a child learned braille and these are students I wouldn’t even consider teaching braille to. They’re visual learners. They have enough vision. And we’ve also seen it in reports where optometrists or ophthalmologist recommends that the child learn braille. And that’s also really tough because they are not the ones that should be recommending that. It’s really a teacher of the visually impaired through learning media assessment that makes that determination along with all the other pieces to the puzzle.
Dr. Sharp: I wonder if it is similar to gosh, like some of that phenomenon with like a TBI, how parents or caregivers can get really bought into the idea that this like a brain injury is leading to impairment that may or may not actually be there, and can cause things that it [00:39:00] maybe isn’t actually causing. I don’t know if y’all see any of that or maybe it just varies across the board. Parents that are super bought into visual impairment as a major limitation or not.
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[00:40:00] All right, let’s get back to the podcast.
Marnee: Well, and I really do think that it was interesting because, with my own children, they were going to high school with two visually impaired children, one who used large print and one who used braille. And I was fascinated listening to all of the kids talk in our living room because they saw braille as being very romantic, kind of what you do if you’re visually impaired. Large print to them just looks strange or using a magnifier. So I think there are some societal pressures too the parents want to follow
Dr. Sharp: Sure.
Stephanie: I was just going to throw out there. I think sometimes the focus is on the visual impairment because it seems like that’s something that can be fixed. And whereas a learning disability, you can’t fix it. You can come up with strategies and you [00:41:00] can come up with interventions, but you’re not going to fix it. And I think that’s also where it goes.
Dr. Sharp: That makes sense. Carol, I know you’ve been waiting here.
Dr. Carol: Just a tiny bit. When I was teaching in one district, we had one student who never made academic progress until she learned braille. It was because qualitatively, her vision wasn’t good enough to distinguish between similar-looking letters. That was one case where that did matter.
And then we’ve had sometimes a student who insisted on using print despite the fact that he couldn’t be efficient with it. He was a student with a traumatic brain injury, hit by a car while [00:42:00] riding his bicycle. And he was such a good braille reader that he could read through a bandaid. He had tactile sensitivity, but he didn’t have the processing speed to keep up with other children as they were taking turns reading. So I had to teach him to skim. Does that make sense? Is that relevant? If it’s not relevant you can…
Dr. Sharp: Yeah, I think it is. All this is relevant and helpful. There’s just so much to consider. I’m just sitting here like a deer in the headlights trying to take all of this in and I’m guessing some listeners are as well. So is there anything else to say, well, I know there are tons that we could say about learning disorders, but anything else you want to add, Marnee before we [00:43:00] shift over to the autism realm?
Marnee: No. I’m sorry. I probably took longer talking about it than I should have. It’s an interesting topic to me.
Dr. Sharp: Not at all. No, it’s super interesting. And you really anticipated that question of mine which is, how do we even separate these things? And can we separate those things? I think you did a great job talking through that.
Dr. Sharp: Of course. So maybe it’s time to shift over yet to the area of autism and other medical concerns.
Dr. Terese: Yeah. It’s my field. And I’ll encourage Marnee to jump in with comments as needed. But I think one of the things I was really pretty surprised when the recent estimate for autism came out as 1 in 44, that came out within the last two weeks. And that’s in the general population.
As Marnee had [00:44:00] mentioned just in relation to the learning disabilities, kids with vision impairments, the vision impairment was the dominant focus. So there was not a lot of emphasis or encouragement to look for autism and kids with vision impairments. In fact, repetitive behaviors were referred to as blindisms for many years. And so, that still exists as a term in some people’s minds and in some people’s experiences. So I think the audience needs to be aware of the fact that they may hear of those repetitive or stereotypic behaviors as blindisms. And I basically try to remind people those occur in many different populations, including cognitively impaired kids and other kids with sensory deficits.
So the other thing that I hear, Jeremy is autistic-like when people don’t want to consider the big A in the population of kids with vision impairment. So they’ll refer to some of the echolalia or some of the other things as autistic-like, and [00:45:00] that also muddies the waters pretty significantly as diagnosticians. So just some cautions in terms of things.
The other thing, and I think we talked about this a little bit the other day was, when kids are engaging in stereotypic behaviors or those repetitive behaviors, I want to make sure that people have been working with them on how to use their hands effectively, because otherwise, we may be seeing stereotypic behaviors because the children don’t know quite how to approach their environment in a functional way. So as a rule out to make sure that that’s taken into account.
I think the other biggest consideration, and this is for the population of professionals working in the field of visual impairment is it’s really the cluster of behaviors that define autism spectrum disorders. Those sensory sensitivities, the communication deficits, the repetitive behaviors, and difficulties with change and that social [00:46:00] communication difficulty. And so, it’s that big cluster, a clump of behaviors that we need to be looking at, not just the stereotypic behaviors, not just the echolalia, which again, I think is what’s been confusing to people.
There are at least 14 eye conditions that I’ve found literature on that have a subgroup of kids with autism spectrum disorders. I’ll just mention a few of them. Retinopathy of prematurity. So those extremely low birth weights premies are at risk for spectrum disorders as well as visual impairments. Leber’s congenital amaurosis, optic nerve hypoplasia, and amblyopia- which is the lack of eyes, congenital rubella syndrome, CHARGE syndrome, WAGR, Cornelia de Lange, Norries, albinism- which again, people may not think of, but a subgroup of kids with albinism are on the autism spectrum, and velocardiofacial syndrome to mention a few of those. All have been substantiated in the literature as having a subgroup of kids with autism spectrum disorders.
And I found a study [00:47:00] that was done in 2016 by Kancherla et al. And it was using CDC data. And they found in the Atlanta population between 2000 and 2008, 7.2% of the visually impaired population of children under the age of 8 years had an autism spectrum diagnosis. So it’s not an insignificant number. And most of those with kids with low birth weight had intellectual disabilities and congenital malformations or syndrome. So just something to be aware of is that there are autism spectrum disorders and the population of kids with vision impairments.
So what do we do about it? We really want to look at developmental history, so gathering significant information and teasing out. And there are some [00:48:00] suggestions in terms of things like lack of babbling and some of the repetitive behaviors and lack of curiosity, social curiosity, social interest as red flags.
Family history is important because I had a young man who was an ex-preemie. He was born at 23 weeks gestation. And after I diagnosed him with Asperger’s, his uncle was diagnosed with Asperger’s and the uncle didn’t have any birth history complications. So genetic links are pretty important to tease out. Educational history in terms of the types of interventions that have been done with the kids, again, as I mentioned, in terms of hand function and use and social interaction supports and those kinds of things. We want to look at what kids have been given.
Adaptive behavior measures are important to include. And as we’ve mentioned repeatedly, unfortunately, there are no adaptive behavior measures that are developed on [00:49:00] kids with visual impairments. There was the SIB-R which is the Scales of Independent Behavior, but that hasn’t been updated. And so, they had removed the visually loaded items on it, but it’s a pretty dated test.
I use the autism spectrum rating scale, and what I suggest people do with anything that has reference to eye contact or making eye contact is that we substitute the orients body in the direction of the speaker, because that’s what we’re often telling folks with visual impairments to do is, to let your audience know that you’re listening, you really need to face them. And so eye contact is not going to be appropriate to use with a population of visually impaired, but orienting body in the direction of would be important.
I also use parts of the ADOS. You can’t score the ADOS. It’s not been developed on kids with visual impairments, but I’ve found some of the play materials to be useful. I had [00:50:00] one little boy who was an ex-preemie and he could not get past some of the stimuli that were involved in that pretend play. So for those of you that have done the ADOS, there are two sets of balls. One is a set of globe-like balls and the other are multicolored. It’s like four colors primary colors on it.
Well, he labeled one as a globe. So he couldn’t pretend that they were just playing balls and the other ones were weather balloons. And so he couldn’t engage in any play because he was stuck on the perception of what the qualities were, which is pretty telling for a child that this was a pretty bright little boy. I found it useful in terms, and I also made sure that the children that I’m doing the ADOS with have that opportunity to explore the materials before we get into any play because as we know these kids are not incidental learners.
I sometimes will use the CARS and also the social responsiveness scale, the BASC-3 [00:51:00] which Marnee mentioned. And there’s a criterion reference checklist, I’m not sure if it’s still available on the web, but I’d be happy to share it with people, that came out of the Kentucky autism manual that was probably 10 or 15 years ago. What I like about it is it has a whole bunch of behaviors that can be challenges for children on the autism spectrum.
And I like to use it with multiple team members because it goes through some of the stereotypical behaviors, it goes through social communication difficulties and it’s like a 3 or 4-page form. But I just think it’s invaluable because it’s a lot of detail and you can compare what other people’s experiences are across settings. So again, it’s not in the information that we share but I found it pretty helpful.
And I think why seek the diagnosis if the kids are already getting services as a child with a vision impairment, I’ve gotten that repeatedly from people. It’s like, oh, we don’t want to talk about the [00:52:00] big A. It’s because, and I’ll quote, a young man who was on an Asperger’s autism listserv for folks with vision impairments, he said, “Asperger’s causes me many more problems across a wide spectrum which blindness does not do, and has ever since I was a small child. The symptoms of both autism and depression had been devastating throughout. While I was growing up my tantrums from sensory overstimulation were attributed to my being a spoiled child, and I was treated as such, leaving me with a sense of inferiority and hopelessness”. So I thought that was pretty telling.
And it really from a programming perspective, and as somebody that works in this field, it’s really the autism that needs to drive the bus with the strategies for kids with vision impairments laid over the top of that. And actually, a number of the strategies that are used with children with autism spectrum disorders and visual impairment are as comparable to what others [00:53:00] used with deafblindness. So calendar systems and people will say, well, gosh, how can you use visual systems? Well, what you do is, some of the visual systems for those kids that are low vision and you use touch tell systems or tangible systems for kids that don’t have usable vision. So whether it’s braille or objects, symbols and things like that to support their understanding. And let me be quiet. Any questions or thoughts? Marnee, anything to add?
Marnee: Terese, I’m curious because I have a bias, what do you think about super identical population with kids with of VI? I think the thing that I struggle with always is for some kids there’s almost a magic moment as they acquire language, as they acquire experiences. What we see are some of those behaviors that just are ameliorated or greatly reduced? [00:54:00] I don’t know. Do you unidentify them? What do you do?
Dr. Terese: You mean, do you unidentify them if you diagnosed him with an autism spectrum disorder or what?
Marnee: No. I mean, these are children that may have been diagnosed by the age of 8, above the age of 5 or 6 as having autism. And it seems to be very different when you look at them two years down the road. But I think parents are often stuck on the autism diagnosis too. I’m just curious what you do, what you recommend?
Dr. Terese: Well, I recommend caution and sometimes to proceed as if they were on the autism spectrum because of the support from a vision and language development perspective, that they can be really important and really useful strategies to be used to support their language development. So I don’t rush to [00:55:00] diagnose a child with a visual impairment as autistic before the age of 4 or 5 because I think we really need to look at the interventions that the children are needing. And that’s where I even whether it’s hand function and those things.
And again, the need to look at the whole cluster, Marnee, beyond just the language like, are they having difficulties with transitions? Are they body rigid when people are approaching them from a social perspective? So I think you have to look with a very careful eye for what the presentation is.
Marnee: Yeah, and I think that was really… and I guess that explained the heart of what I believe as well, that if the child has had some intervention to see where they are, be sure that you carefully plan that that’s sensitive to both needs.
Dr. Terese: [00:56:00] That’s right. And I think what, Stella Chess actually said when she was looking at very young children with spectrum disorders, she said the children with autism, they just look so different than the kids with vision impairments without autism spectrum disorders, in terms of some of the responsivity and things that we would do typically developing kids with vision impairments just don’t resonate necessarily with the kids with autism spectrum disorders. So it’s something that she talked about.
Marnee: And in fact, my experience has been with some of them. Not only is it not helpful, but it really results in escalation behavior […]
Dr. Terese: Absolutely. Well, that’s one of the things, Jeremy, as a former teacher of the visually impaired, I did my internship at the teach program back in the late 80s. And I was there for about 2 or 3 weeks and I called my colleagues in Maine and I said, 3 of the kids on my caseload, 2 of which [00:57:00] had optic nerve hypoplasia were on the autism spectrum. And that’s why all the things I did as a teacher of the visually impaired were not working because I needed to approach them through autism.
And once, we set up some programs and stuff for them those kids really flourished. But doing what we do as TVIs is often providing multi-sensory stimulation simultaneously along with language. And you can basically cause a child with the spectrum disorder to shut down because they’re just overwhelmed with the social and sensory overload. So anyway, I’ll be quiet now.
Dr. Sharp: No, this is great information. And, gosh, I feel like we could do separate multi-hour episodes on each of these little areas.
Dr. Terese: Well, Marnee and I both do day and two-day-long workshops on some of these topics. So trying to distill it into the 10 or 15 minutes is a [00:58:00] challenge but an exciting one. So, thank you.
Dr. Sharp: Sure. So I wonder just in the interest of time should we move on to May, to be able to talk a little bit about deaf-blindness and how that impacts our assessment process?
May: Yeah. Like Terese mentioned, these could be hour-long, several days long, even whole week-long training for each of these topics. They’re so complex and we’re always learning new things as in research and products, new things come out. So deafblindness. I’m glad that we’re touching on this area since there’s a lot of misunderstanding around visual impairment and additional disabilities.
So like I mentioned in episode [00:59:00] one, deafblindness is more than just a summation of the impacts of visual impairment and hearing impairment. Deafblindness is better viewed as a multiplication problem since there are additional cognitive needs that should be addressed when a student has a combination of both visual and hearing loss. These needs might not be present when we only have one of the sensory modality impairments.
And so, like Stephanie mentioned, you don’t need to be totally deaf or totally blind to qualify under deafblindness. We can provide you the IDA code where it goes into the details of that. But a lot of times kids might be missed because their team might be like, oh, they’re not deaf. They just have a hearing impairment. So they’re just going to have VI be their name because they’re already eligible. But like Terese mentioned, it’s not [01:00:00] so much the point of labeling a student but making sure that we provide the appropriate interventions and provide access to whatever services and accommodations that might be most appropriate to help the student progress.
I’m trying to go fast. To go back to what Terese mentioned a little bit about using objects and how that could be really useful for students with multiple disabilities or students with visual impairments who are at the more functional cognitive level or for students who are deaf-blind, there are different object systems that you can buy. Some are pre-made from stacks. The link will be in the show notes. But standardized tactile augmented communication symbol. I know my speech-language pathologist, Rebecca Henry likes this a lot. [01:01:00]
There’s different or pre-mounted objects, symbols, and these are nice. Of course, you can use real objects from the environment but because they’re mounted, it becomes something different. This is a symbol rather than an actual cup that I might use and try to drink out of. So these can be nice to use for making objects schedules. So like Terese mentioned, you might use objects scheduled and move up to picture schedules with students who have autism but students with visual impairments, you might stick with the object schedule if that image doesn’t really have any meaning for them.
And it’s important to use objects that are relevant for a student. For example, this symbol for a lunchroom is a spoon but for a student who is just finger feeding, they might just want to use maybe a container object to represent if they usually have snacks coming from a container. So that’s more [01:02:00] representative of lunch for them. So there is this pre-made sense that you still got to always personalize and individualize what tools are being used for our students. Sorry, I’m going to jump it all over the place.
Dr. Sharp: Sure, that’s all good.
May: Luckily at California School for the Blind, we are on the same campus as one of the California Schools for the Deaf, there are two of them in Fremont and Riverside. I luckily was able to communicate with one of their audiologists. And a lot of times people might look at audiograms and be misled if you’re not trained to think like, oh, a student might seem to be doing well but the audiogram might mislead people to think that a student is hearing and understanding.
So when there are high frequencies that are compromised, the student might not have [01:03:00] access to the high-frequency sound that makes speech intelligible. Examples of high-frequency sounds are the voice as, I’m not a speech-language pathologist so I probably could not be doing the right sound for S F T H K T. So these not only provide the difference between words like backed and back but are also essential for plurals, tense markers, and even more critical for a youngster learning a language.
These aided responses that they might get with a hearing aid or cochlear implant can give a false representation of what the individual hears and actually understands. So although they might hear some sound provided in the sound field, it’s not exactly what is required when attaching meaning to the words and language that they’re hearing. So they might [01:04:00] show like a pass or some level of hearing on a high-frequency field but what meaning are they actually attaching it? So going back to the concept of what is relevant in a clinical testing environment, and what happens in actual real life.
So at times, students with deafblindness will need some extra help with social skills because like our students who have just period pure “social impairment,” there are going to be a lot of missed opportunities for incidental learning. So learning that happens naturally from observing and interacting with your everyday environment. So just like our students with visual impairments, you’re going to want to provide a lot of hands-on and experiential learning opportunities for them to develop meaningful understanding of new concepts. This goes along with what Carol was mentioning.
When [01:05:00] it comes to picking out tools for an assessment, it’s a really big challenge because just like kids with visual impairments, students who have deafblindness present with quite a variety of strengths and needs. So what might be best for one student might be totally inappropriate for another student. So going back to our theme from episode one, consult and collaborate. You want to collaborate with your TVI and deaf or hard of hearing specialists, you have an audiologist on the team and your speech-language pathologist, and an intervener.
I believe that interveners are not being used in every part of the United States but intervenors are specially trained paraprofessionals who facilitate communication and the student’s experience with the world around them. So a lot of times with a student with special needs who has an aid, you might [01:06:00] say like, oh, we should rotate the aids around so that the student doesn’t become dependent on one adult but this is a very different type of specialized player professional. They learn the student’s way of communicating and providing language support whether it be through American Sign Language, or there could be there’s so much to this.
It seems like it’s hard to go into depth with all of it, but basically, you want to have one person who understands how that student communicates present during the evaluation. You don’t want to have a random person who knows ASL because then that person won’t necessarily know how this particular student communicates. There might be different needs and practices that the intervener would know.
So that makes it even work difficult for interpreting, [01:07:00] because we know even for like if you’re interpreting a test in Spanish, for example, it’s not going to be exactly the same. So going back to what Carol was saying, qualitative interpretation is probably going to be a lot more meaningful and helpful than scoring things out and providing standard scores. There are various informal assessments tools that are specifically made for students who are deaf-blind or who have visual impairment and muscle pull disabilities. And these are typically for students who are in the earlier stages of development no matter what their chronological age is.
So the Hometalk is an assessment tool to use with parents and care providers. It gives you a really broad picture of the student’s skills and interests and personalities. It’s a [01:08:00] questionnaire. How we all learn is another well, it’s not specifically an assessment tool, but it does provide technical assistant and it does have different checklists like preference inventories, and looking at how the student really takes in different sensory information and which ways he might best engage a student to be an active participant because with similar to students who have a visual impairment, students who are deaf-blind, if they aren’t provided adequate supports and proper setup for their environment, there’s a high chance for them to become passive people in their environments and not be active learners.
So there has to be a lot of care taken to set up the environment correctly. The Communication Matrix with our SLP friends to ease for students who have not yet established a form of communication of [01:09:00] these skills assessments from Texas. That’s another one that’s an effective tool for looking at strengths and weaknesses in social communication, emotional development, looking at their motor skills, basic concepts, representation, and cognition, child guidance strategies.
The Van Dijk Approach to Assessment book also provides lots of ideas for assessment. It guides your observations to looking at behavioral states, orientating responses, learning channels, approach memory, social interaction, communication, and problem-solving. There are many others, but a lot of them go back to Piaget Jean’s theory of development looking at how a student is using the sensory information that comes in, how are they problem-solving if they are starting to independently trial [01:10:00] different things, or how much facilitation is needed?
Another thing that is really important is that we need to look at the daily living skills for these students no matter if they’re lower functioning student or a student who is academically on track or academically advanced. A lot of their daily living skills might be facilitated for them or done for them by adults who might be really well-meaning but we really need to enhance their quality of life and long-term thinking.
We need to help support these students to learn how to do daily activities independently. So dressing, bathing, personal care, and even orientation mobility- how to get around independently. All of these affect their mental health. So a lot of students who are defined as students who are “purely visually [01:11:00] impaired”, have a high percentage of mental health challenges that are presented due to not having true friends or having feeling a little bit helpless or so dependent. So having independence in their compensatory skills like braille or using their right hand to be able to navigate independently is so important.
A lot of times I feel our evaluations focus so much on the cognitive and academic, but these independent adaptive living skills are so important for their quality of life as they transition on past school.
Dr. Sharp: Yes, to all of that. Yes, they are. It’s funny. It’s I think a good note to start to wrap up just for recency sake. I think with the timing, my episode on adaptive functioning will have come out relatively recently to this one. [01:12:00] So it’s nice tag team piece of information. I know that we just scratched the surface with so many of these topics and y’all just gave us like a tour de force of introduction to working with these kiddos. I think these are episodes that folks will definitely go back and listen to hopefully, multiple times and different sections depending on what their interests are, who they’re working with.
So just as a way to start to close, first of all, thank you all for being here and for dedicating so much time to doing these two episodes. I think that folks are going to take a lot away. There are a ton of resources in the show notes both from presentations and materials that you all have put together but also [01:13:00] resources from other folks.
For someone who would love to start to learn more about this area, is there anywhere in particular that you might point people to just to start to weigh in and start to get some working knowledge and maybe continue down the path? Where should somebody start if that’s possible to identify?
May: Terese, I see you’re hand. So you should go first.
Dr. Terese: Well, one thing and it’s going to be updated is Marnee’s book called Making Evaluations Meaningful. The Texas School for the Blind is supposed to have that out in December. We’re all keeping fingers and toes crossed, but Marnee’s first book was such a [01:14:00] powerhouse of information and I can’t suggest that more strongly than that.
I think the other thing is to watch some of the various webinars that we’ve all presented on. I think too, feel free to contact us in terms of questions. I think we’re all pretty open to getting some questions asked of us. May, what else would you add?
May: I would just say the intelligence testing document that was posted on APH that Marnee and Carol both contributed to you along with Stephanie Goodman. I feel like it’s a brief, maybe 10 or 11 pager that is so straightforward. So someone who’s brand new could access that freely online and get a whole lot of good information to start wrapping your brain around assessing students with visual impairments.
Dr. Terese: [01:15:00] Connecting with TVIs.
Marnee: Well, then I will add that I actually heard that it’s not going to be out in December because I’ve got the draft that I’m editing for my goodness surprise under the tree. I think they’ve decided that the book will be available online as well as in a hard copy. If I stay focused and don’t have any fun over Christmas, it will be ready.
Dr. Terese: Well, we wouldn’t ask you to do that, Marnee.
Marnee: Not much chance, but the whole idea of that is it’s got chapters on the starting thing in terms of how do you start an evaluation and then each chapter on the different eligibilities and strategies instructional with each of them.
Dr. Terese: And as a valid point, the last one is superb.
Marnee: Well, that’s very nice. [01:16:00] I look at it now and I can see are the typos and things I would have done differently. So I appreciate the feedback.
May: Marnee is so humble as always. People have called it the VI valuation Bible. So, really, once that new one comes out I know [crosstalk]
Marnee: No, it was a work of love. So I hope it helps.
Dr. Sharp: I’m sure it will.
Dr. Carol: It will be, as May said, the Bible.
Marnee: Well, thank you. I will sit under the Christmas tree and work on it every single day.
May: Real quick too. I think that people can check out if they’re new to the world of evaluating students with visual impairments, Carol’s doctoral dissertation is posted online and it’s wonderful. [01:17:00] It’s called Psychoeducational Assessment of Students Who Have Visual Impairment: Perspectives of Teachers of Students Who Are Blind or Who Have Low Vision and School Psychologists. It’s a great read to understand this field. And Carol also added a chapter with Dr. Jerome Sattler. Most people have Sattler’s book and chapter 20 of the sixth edition of Foundations of Behavioral, Social, and Clinical Assessment of Children. So chapter 20 is a topic dedicated. Oh, and I see Carol right there, So go ahead, Carol. This is yours.
Dr.Carol: Not every university requires that second volume to be purchased including my own.
May: It should be.
Dr. Sharp: Sounds like you need to talk to somebody there.
Dr. Carol: They know.
Dr. Sharp: You have so many good resources.
Dr. Carol: I don’t know [01:18:00] if he’s going to go for a 7th edition, but I’d like to suggest any one of these people here be the one to go off for a chapter with him.
Dr. Sharp: Well, between all of you, there’s so much knowledge. I’m just, again, grateful that I was able to spend as much time as we have with all of you. And really for listeners, the show notes are packed with resources. So go check those out. I really can’t say enough thanks. This has been great.
Dr. Terese: And our pleasure.
Dr. Carol: Yes.
Marnee: And fun.
Dr. Sharp: Oh, good. Hopefully not too much work. Hopefully.
Dr. Carol: I’m just happy to be considered still relevant.
Dr. Sharp: Oh my gosh. Absolutely.
Marnee: Well, and I think all of us require to see younger people who are interested in the field and are going to carry on. So that’s [01:19:00] nice. It’s worth any effort on our part.
Dr. Sharp: It’s very much appreciated. It’s amazing to live in a time when we can do something like this and spread this knowledge to as many folks as we can. That’s the true gift. Well, thank all of you. Enjoy your holidays and maybe we’ll bump into one another again in the future.
Dr. Terese: Cheers.
Marnee: Thanks so much, Jeremy.
All: Bye, bye.
Dr. Sharp: Okay, y’all. Thank you for listening to these episodes. As you could tell, this is just a ton of information to take in for someone who is not an expert in this field. And I would encourage you certainly to check out the transcript for these past two episodes or maybe listen to it two times. And the hope is that you take away what you need to take away, and you can always revisit this material and the many [01:20:00] resources that we listed in the show notes to get more education, more information, and help these kids as best we can. So thanks again for listening. I hope you’re all doing well. I will talk to you next nect time.
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