Hey, welcome back. Today’s episode is going to be a good one. I know I say that a lot because I believe in it, but today’s episode is a little bit unique for two reasons: One is that we’re talking about a fairly niche area in assessment, i.e, how to assess for autism and pragmatic language skills in deaf children. The second is that I’m talking with Dr. Aaron Shield, who is not a psychologist like most of my guests, but he is a linguist who’s been studying this area for really his entire professional career.
A little bit about Aaron. Aaron got his undergraduate degree in Music and Romance Languages at Wesleyan University, then moved to Texas to pursue a doctorate in Linguistics at the University of Texas(UT) Austin. You’ll hear during the interview that we actually figured out we were at Austin at the same time. While I was doing my doctoral internship, he was down there for his Ph.D. We probably passed each other on the streets or in the hallways at some point.
But after UT Austin, or actually midway through grad school at UT Austin, Aaron went to Rome with a Fulbright scholarship and was able to study sign language and cognitive development. Got his Ph.D. in 2010 and then did a post-doc in psychology at the University of Chicago and Boston University, and in communication sciences and disorders at Emerson College.
He is currently an Assistant Professor in the Department of Speech Pathology and Audiology at Miami University of Ohio. Aaron is a pretty prolific publisher. If you check out Google scholar, you will see that he has received more grants [00:02:00] than I can count or list here. And he has been recognized by a number of different autism organizations over the years as an incredible contributor to the field and advocate for folks on the spectrum.
So, I hope that you enjoy this interview with Aaron. We really get into some of the nuances of sign language: differences with spoken language and how pragmatic language plays into all of that and tying it all back to the development of language and social communication in kids with autism. So stick around. This is a good one.
Hello, everyone. Welcome back to another episode of The Testing Psychologist podcast. Thanks for being here. I’m really excited about my guest today, Dr. Aaron Shield. Aaron is here to talk with us about, I think very valuable, but admittedly maybe a small niche in the assessment world, which is working with kids on the spectrum who are also hard of hearing or deaf and using a lot of sign language, nonverbal kids in general. So, I’m really excited about this conversation.
Aaron, welcome to the podcast.
Dr. Shield: Thank you for having me.
Dr. Sharp: I’m very grateful that you’re willing to come on. We were talking before we started to record about how in some cases I have had guests on my radar for a long time, for whatever reason, they’re prominent in the field or in test development or whatever it might be, but for you, it was really a nice circumstance where I was literally in an assessment supervising a trainee doing ADOS with a kid who was hard of hearing, and it just got to Googling what does language development look like with kids on the spectrum who also are signing and the sign language, and that led down this whole rabbit hole of, is sign language prone to the same nuances of language that we typically see in kids on the spectrum? Your research was at the top of the list and you thankfully agreed to come on and chat about that. So, I really appreciate it. I’m excited to talk to you.
Dr. Shield: Yeah, me too.
Dr. Sharp: I just want to start out, especially with a niche like this, what led you to this and why this work specifically?
Dr. Shield: It’s been a long circuitous journey for me. I should say off the bat, I’m a linguist, I’m not a psychologist. My background before graduate school was in romance languages. I’ve always been interested in language, language acquisition, and I’ve always been thrilled and fascinated by the process of acquiring language.
When I got to graduate school at the University of Texas at Austin, I was first introduced to American Sign Language. There were a number of deaf graduate students and deaf teachers at the linguistics department there. And seeing American sign language in use there really exploded my understanding of what language was, and what human language could be. And so, I started learning ASL and started thinking about how the process of language acquisition might be different for deaf children or for really any children who are acquiring sign, which can be deaf or hearing children.
I then became interested. I started around 2007, hearing a lot about autism. I didn’t know anything about autism at the time, but I started thinking and wondering [00:06:00] about what it might be like to be a child who is a signer, who is visually oriented, who perceives language visually, but has difficulty with various social skills such as looking at other people’s faces. And so, that presented this paradox to me.
My children, who are signers, who also have difficulty with certain social skills, how would they perceive language? How would they be able to acquire sign language? And what’s that different from say, hearing a child with autism acquiring speech who doesn’t have to look at the person they’re talking to in order to perceive language?
I also needed a dissertation topic at the time. I looked around and when I Googled in 2007, there was actually almost nothing. And so, my dissertation advisor, Richard Meier said, sure, you can poke around there and see what you find. Neither of us knew what we were getting into. And it turned out to be a very difficult research topic for a number of reasons, but one that over the years I think has yielded some valuable insights.
So I started out really with a small study of finding deaf children who not only had autism but also had deaf parents. And the reason for that was that I wanted to understand what sign language acquisition looked like in the ideal situation of a deaf child who’s exposed natively to a sign language, either deaf parents.
So that’s really only 5% to 10% of deaf children who have deaf parents who are receiving basically full, perfect exposure to sign. And therefore, any abnormalities or differences that you would see in their language, you would know would be because of autism and not because of a lack of appropriate language exposure.
Those kids are very rare. I managed to find about 10 of them for my [00:08:00] dissertation who are located around the United States and started observing what their language looked like. By language here, I do mean sign language. I don’t mean speech. I didn’t look at speech at all.
I started noticing some differences in the way that they signed from say, typical deaf children. And focusing on those differences has been a really interesting way to understand how autism affects language, not just speech, but sign language, and also how social skills interact with language acquisition.
I think your question was how I got into this. It was by chance, but I’ve followed it, and I continued to follow it as far as I can.
Dr. Sharp: Yeah. I was really struck by just the complexity of the research you’re doing, by which I mean, there are so many layers and the different facets of language in autism and signing and autism and language development in kids who are deaf. There are so many ways to look at it. I was really taken aback and in a good way that this research is out there. It’s pretty incredible. I can see where you could make a long career of doing this kind of thing.
Dr. Shield: Yeah, exactly. There are many things about it where we just needed to document; what does sign language acquisition look like in kids with autism. There were other things where we could ask more theoretical questions. I’ve tried to explore both of those. And then, I think maybe more to the interest of your audience, I tried to also write about what are some of the applications of this research in clinical practice. What are the implications for assessment, for diagnosis, and more recently starting to talk about intervention or educational strategies?
So it’s really a two-fold approach. One, a more basic, [00:10:00] theoretical approach, asking questions about language and cognition, and then a more practical approach for an admittedly very small clinical population, but a population that is currently I think, quite underserved because there aren’t that many people who know both about autism and about deafness. There is a handful of clinicians in the world really who are knowledgeable about both and most families don’t live close to those particular clinicians or their school districts aren’t able to help them.
So I’m hopeful that we can start to… Also that this work can eliminate more everyday situations. The parents of the kids that I see always want to know, well, how do I do this? What’s the best approach? And most of the time, especially in the early years, I had to say, I don’t know, I have no idea. I’m trying to understand what’s going on, and hopefully, someday we can provide some answers to that. So, that’s an ongoing challenge.
Dr. Sharp: Of course. Well, there’s a lot to dig into from just these first few minutes of the show. First of all, most importantly, were you in Austin in the 2007/2008 year?
Dr. Shield: I was.
Dr. Sharp: Very cool. I did my pre-doctoral psychology internship at UT Austin over the course of that year.
Dr. Shield: No way.
Dr. Sharp: Yeah. So, who knows? We may have passed each other on the street someday.
Dr. Shield: How funny.
Dr. Sharp: I’m struck by it. I’ve had, this is just an aside, but the number of folks who are connected to UT Austin or just Austin through their training, I’ve interviewed a good number of folks where that’s been a part of their lives.
Dr. Shield: Yeah, it’s such an incredible Institution.
Dr. Sharp: Absolutely. Okay. So we got that out of the way. We’re connected somehow. I wonder if we could back up and just do some, I would love to have just a general discussion about acquisition of sign language [00:12:00] versus acquisition of spoken language. And this might also be a time if you could indulge just some terminology like I’m wondering, am I using the right one. When I say deaf or hard of hearing, are those the terms that are appropriate, and so forth? So just some of those basics, if you wouldn’t mind.
Dr. Shield: Absolutely. I should say, first of all, the field of sign language linguistics is relatively young. It wasn’t until 1960 that any linguists or anyone considered sign language as actually languages. Before that, it was assumed that languages had to be spoken.
But in 1960, a linguist at Gallaudet University named Will Stokoe started studying. He was a hearing researcher and he had a number of deaf research assistants working with him. He started studying what people at Gallaudet, which is a university for the deaf, were doing with their hands. He discovered systematic structures very much like the structures we find in spoken languages. And this completely changed the conceptualization of what language was by reformulating language as something that could not just be spoken, but also could be sign, and perceived visually.
In terms of terminology, most members of the deaf community prefer the term deaf. They don’t prefer to be called hearing impaired or something like that, which really implies a medical deficit. Deafness is usually conceived by people that are users of American sign language as a cultural identity, rather than a medical diagnosis. The term hard of hearing is also used for people who perhaps do not identify as culturally deaf or whose hearing loss is not so great as to exclude being able to perceive speech.
And then in terms of words to talk about language, when we say language, I definitely think it can mean either speech or sign. So when I’m talking about spoken language, I tend to use the word speech or spoken language, and to talk about sign, either sign or sign language. People tend to sometimes use language to mean speech. I definitely do not mean that here. I hope that clarifies a little bit about terminology.
Dr. Sharp: It is helpful.
Dr. Shield: In terms of acquisition of sign languages, we know quite a bit now about the typical acquisition of sign languages by children who are developing normally. And most of what we know is that sign languages develop pretty much like spoken languages, that is, they’re acquired naturally and without explicit instruction through exposure from caregivers or others in the environment. You can acquire sign language. Basically, any child can acquire sign language. You don’t have to be deaf to acquire it. And sign language is basically developed in the same order of milestones and stages as spoken language is.
It’s thought there might be a slight advantage in terms of age of producing first signs as opposed to first words, maybe a month or two, say the average age of first signs might be 10 to 11 months as opposed to generally 12 months for first words, but that probably has to do with the relatively larger muscles involved in moving one’s arm and hand, as opposed to the very fine motor movements needed to articulate speech sounds.
But in general, if there’s one take-home message for your audience, it’s that basically sign languages and spoken languages are functionally and linguistically equivalent. Most studies of the brain that we have at this point show that the same areas of the brain are activated in the processing and production of sign languages and spoken languages. But that doesn’t mean there aren’t interesting modality differences between the two. And one of my interests really lies in exploring what those differences might be.
Dr. Sharp: Yeah. So you’re anticipating one of my next questions about the neuroanatomy of sign and spoken language. So I like that. Now may be a good time if you are willing to talk about some of the nuances there that you know about. What do those look like?
Dr. Shield: In terms of neuroanatomy?
Dr. Sharp: Yeah, if that’s what you were referring to that you said there may be some subtle differences.
Dr. Shield: Oh yeah. Well, with modality differences, I also was referring to say differences that we see in the difficulties that kids with autism have with sign language versus spoken language, which I’m happy to talk about as well.
But in terms of neuroanatomy, which I’m really not an expert in, in the 80s and 90s, there were some really important work on deaf signers who had brain lesions. What was really amazing about this work was that it showed that signers who had lesions in the left hemisphere in say the two areas of the brain that are most associated with language, Broca’s area, and Wernicke’s area, showed the same kinds of aphasias as hearing speaking people who had lesions in those areas.
And this was not assumed to be the case at all. It was not assumed that these areas of the brain would necessarily be used for sign languages given that sign languages are visual and use lots of spatial processing, which is typically associated with the right hemisphere. But it turned out that, if you’ve got a lesion in the left hemisphere in Broca’s area, you produce short telegraphic choppy signing in the same way that a hearing person with a lesion at Broca’s area would produce short telegraphic, choppy speech. And similarly for Wernicke’s area, fluent, but contentless or difficulties with semantics when with lesions and Wernicke’s area.
Dr. Sharp: Got you.
Dr. Shield: In terms of differences, I think there is more activation in the right hemisphere for certain kinds of sign language constructions that involve more spatial processing like depictions of spatial layouts. If I were to sign about where all the rooms in a house were or navigating through a town square, that involves more spatial reasoning. And so, there’s a combination of both linguistic areas typically in the left hemisphere, and spatial areas typically in the right, but again, the caveat that this really isn’t my area of expertise. That’s my understanding of some of the similarities and differences in the brain representation of sign languages.
Dr. Sharp: Great. I’ll take it. Just in the interest of talking through some of the basics and moving forward, you mentioned before we started recording two myths about sign, and I would love to just touch on those because both of those things are things that I would’ve gotten tripped up on and probably believed. So, could you talk about some of the myths that people think about sign language and development?
Dr. Shield: Sure. There are probably two big myths that as a sign language researcher I find I have to explain all the time. The first one is the idea that ASL- American Sign Language is a translation of English. That is not true. It’s true that deaf Americans live in a country where spoken and written English is everywhere. And so it’s more of a situation of language content. More similar to say, you might have a contact situation between English and Spanish in places like Miami or New York City, where there are two languages that are in use and they might influence each other.
But American Sign Language does not derive from English. It’s not a translation of English. In fact, the history of American Sign Language shows that it comes from French sign language, not even British sign language. And so, an interesting fact is that deaf Americans and deaf British people, when they meet, do not have a common sign language and would have to resort to either gesturing- which is universal or, I shouldn’t say all gesturing is universal, but to a less linguistic form of visual communication, or to writing in written English which would be as a second language for both deaf Americans and deaf British people.
Dr. Sharp: That’s fascinating.
Dr. Shield: Yeah. So every sign language has its own unique history which is tied up in the history of the countries where those languages exist, the history of deaf education, and in our case, the first school for the deaf was founded by a guy named Thomas Hopkins Gallaudet, from Gallaudet University is named. He went to Paris in the 1800s and observed a deaf school there and brought back a French man, Laurent Clerc, a French deaf teacher, to establish the first deaf school here. And that’s why American Sign Language shares so much with French sign language, but not with British sign language.
So, it’s true that many sign languages around the world are related to say French sign language or British sign language, but they’re all culturally specific, and they’re not universal. So that’s the second myth, which is that all deaf people around the world can communicate with each other using the same language. And that’s not true. If that were true, it would basically mean that sign language isn’t really language. It’s more like pantomime. It would be transparent. Everyone could understand it.
Any nonsigner knows, if you watch [00:22:00] ASL or any other sign language, you can’t understand it. You might be able to guess the gist of what people are talking about, and there might be some signs that are more pictorial or iconic where you might be able to guess what they mean, but it’s clear that it’s not a universal form of communication because you won’t be able to understand it unless you study it and learn it like any other language.
Dr. Sharp: And that point about ASL not being a direct translation of English, is that consistent with other languages around the world as well, like say Mandarin or German or whatever it might be? Is sign language typically not a direct translation of that native language?
Dr. Shield: Yes. So typically, it’s not a translation. They’re independent, autonomous linguistic systems with their own word order, grammar, morphology, and lexicon.
So, even if I could tell you say, this is the sign for a tree in ASL, so there’s a correspondence between the word tree and the sign that I produce, which of course your audience can’t see, but it’s produced with my forearm upright with a little shake of the wrist- it represents the trunk and branches of a tree, but there are signs in ASL that really don’t have good equivalents in English that are used completely differently and they’re not direct translations.
Probably the easiest thing to consider is that the syntax is completely different. And by that, I mean the grammatical structure and word order. Just to give a basic example, in English, a sentence like, “Have you been to France,” in an ASL would be something like the verb touch, [00:24:00] then the verb finish- which is a past tense marker, then the pronoun “you”, which is a point to other person, and then the sign for France. So touch finished you France. That’s a completely different word order. The choice of the verb, touch.- we don’t use the verb touch to mean, have you been, and this past tense marker finish is not how we make verbs past tense in English. So I think that’s a good example of how independent the sentence structure of ASL and English are.
Dr. Sharp: Right. That’s a good example. I appreciate you providing something very clear like that.
And then, we’d also talked a little bit about something that I run into clinically specifically with kids on the spectrum who may not be deaf, but just non-verbal and parents are really concerned about if they try to develop sign language or use sign language, is that going to delay or keep them from learning actual, not actual language, spoken language? Is that something that you can speak to at all?
Dr. Shield: Yeah, absolutely. So this runs both ways. I hear both: don’t teach kids sign because it will interfere with speech as well as give everybody sign because it will increase your IQ and make everybody a genius, and whatever. That’s typically the fad of Baby sign, which is become quite popular with a certain segment of the population that have typically hearing kids but want their kids to communicate with them perhaps a little bit earlier than they can speak.
In general, I would say, there is no danger of teaching sign language to any children. Sign language will never hurt child development. There’s just no evidence for that. It can only help. It can help kids to communicate. It can also help with their overall cognitive development. And certainly, I would like to emphasize for deaf children who cannot access speech or don’t have full access to speech, that not exposing children to an accessible language in their first year of life, let’s say they’re planning to get cochlear implants at 12 months, that first 12 months, if they’re not receiving any linguistic input at all, I think that can be potentially quite damaging.
And so, I would say, for parents who aren’t sure what to do, for parents who are hearing and don’t know sign language but have a child with a hearing loss, I would just say to the extent possible that visual communication is always a good thing, never a bad thing. And that even if you plan to give your kids cochlear implants, and even if you don’t know ASL, to try to get some kind of sign exposure in those early important months is really, really important.
There’s just no evidence that exposing kids to sign under any circumstances would harm their development or prevent them from learning speech. If anything, we know that the language acquisition device or mechanism is quite robust, right? People used to also ask these questions about bilingualism. It used to be thought that exposing a child in more than one language was damaging and harmful. And there’s also no evidence for that. If anything, it’s, again, the opposite that kids exposed to more than one language, not only can communicate in more than one language, but also there might be some other cognitive benefits to that.
So, my big message is, please don’t be afraid of signing with your kids, and especially if they are deaf or hard of hearing, I would really encourage you to try to either learn some sign or to have some exposure for your kid to an accessible form of communication.
Dr. Sharp: Sure. All right. Well, I think we’ve laid a lot of groundwork. I’d love to dive into some of the nuances of sign language and deafness with kids on the spectrum. So, I’ll ask a very general question and we’ll see where it takes us. Can you just speak to some of the similarities and differences of language acquisition for kids on the spectrum between sign and spoken language?
Dr. Shield: Yeah, absolutely. As you know, autism itself is not a language impairment or doesn’t necessarily entail language impairment. It’s not part of the diagnosis. However, there’s a range of language outcomes that we see in autism ranging from very fluent to non-verbal or minimally verbal. And I would say, first of all, in terms of similarities, that’s true for deaf kids as well.
And I should say I’ve studied mostly deaf kids again with deaf parents. So they’ve been exposed to ASL from birth by their deaf parents, and yet some of them are also minimally verbal in sign. And that is maybe a little bit surprising given that with a lot of minimally verbal kids in speech, we assume that sign would be an alternative form of communication, and yet we see with some of these deaf kids that sign does not seem to be an available channel of communication for a minority of these kids. And it’s really poorly understood at this point what the minimally verbal autism is really about, if it might be some kind of apraxia or if it’s rooted in underlying social and cognitive difficulties.
So, I think there’s a lot more that needs to be done with that. Really the research on verbal kids with autism is just starting and getting better with better research methods and neuroimaging, eye tracking, and things like that that doesn’t require the child to produce language in order to understand what the child understands.
We also see the range of language in kids who are deaf and who sign with kids who are very fluent and maybe just have difficulty with pragmatics with the social use of language and understanding metaphor and sarcasm and indirectness, and the sign language equivalent of intonation- facial expressions and the various ways that we might show that we have a certain attitude about the linguistic message that we’re conveying.
Other things that pop up in both signing kids and speaking kids with autism- echolalia, repeating the utterances of others. I’ve documented in a paper with Frances Cooley, who’s now a grad student at UT Austin in linguistics, and Richard Meier, who’s a professor there, chair of linguistics, that a subset of deaf signing children with autism are echolalic in sign language. That means that they basically repeat what other people sign to them in sign, similar to how some hearing kids with autism will repeat what is spoken to them.
Dr. Sharp: Yeah. That was one thing that really jumped out. If I can Interject here for a second, the kid I was working with that I mentioned, in the beginning, is that I noticed that during the assessment that he was “echoing” the signs from his parents. And that’s what really got my brain firing. It was a very naive perspective, but it’s like the light bulb came on and was like, oh my gosh, what else was going on here? And really led me [00:32:00] down this path of, what other pragmatic challenges do deaf kids show?
Dr. Shield: Absolutely. And so, that underscores one of the important things about this research and why it’s interesting is that helps us understand what echolalia is. It doesn’t have to do with say the repetition of speech or something to do with the vocal auditory modality. It has to do with the approach of some kids with autism to language and communication. And we wouldn’t know that if we didn’t also study autism in deaf signing children.
Dr. Sharp: Yes. That’s such a contribution to the field of autism in general, and it’s pretty amazing. Looking down your list of publications, and I hope we can touch on each of these, there are these components certainly like using the ADOS with kids who are deaf, which I’d love to touch on, but then the pronoun avoidance or pronoun reversal in signing kids, things like that. It’s fascinating. All those little things that we think about and ask about with kids developing spoken language happen.
Dr. Shield: Yeah. Actually, if I could talk about the pronouns for a second, that was an interesting finding. Pronouns have long been a subject of study in autism; words like you and me and how do we refer to ourselves and to other people. From the very first report by Connor in 1943, there was mention of using the pronoun you to refer to oneself. So I think in Connor’s report, he talks about a child who says you want something when he means, I want something, which could be a result of echolalia in the sense that the child always hears the word you addressed to him and then uses it as if it’s his own name or something like that.
But of course, that’s not how pronouns work. We have to shift our use of pronouns. When someone refers to me as you, I have to refer to myself as I, not as you, and vice versa. It’s a complex social challenge. And in fact, typically developing kids don’t get that right away. I mean, typically developing kids don’t use pronouns until well into their language acquisition. And at first, they use names. They refer to themselves with their own name. They refer to their mom and dad as mom and dad, not as you. So they are hard for everybody.
One of the interesting things in sign is that pronouns are actually just points to self and others. The first person pronoun, I, is just a point to one’s own chest. And the pronoun, you, is a point to the person that you’re talking to. So one question I had was, maybe those are easy. Maybe those are easier for kids with autism who are signing because they’re transparent. They point at the person that they indicate, which is different from the spoken words- me and you or I in you, which really don’t give an indication of what they mean. They’re arbitrary words. In a linguistic sense, arbitrary. You can’t tell what they mean just by the sounds.
Dr. Sharp: Right.
Dr. Shield: What I found was that deaf kids with autism actually avoided pointing to themselves and pointing to others and also used name signs much like hearing kids with autism would prefer to use names rather than pronouns even though the name signs might be more linguistically complex, they might involve more hand shapes or motor movements than these seemingly simple points.
And so, it did seem like there was something really interesting about these pronouns and difficult for autism. There’s something very social, of course, about pointing because pointing actually requires other people to follow the direction that you’re pointing in, which is a very social behavior, which tends to emerge quite early, it’s sort of related to joint attention, which also can be impaired in autism. So that was an interesting similarity. I was not expecting it. And I thought, maybe deaf kids with autism would be able to use the sign language pronouns, which are so transparent, but instead they tended to avoid them.
I also was looking for pronoun reversals like the one that Connor reported using you to mean me, and I really haven’t found those. I haven’t found kids pointing to themselves to seemingly refer to others or pointing to others to refer to themselves. Instead, I found a different kind of reversal, which I think might be the sign language equivalent. And this is a way of understanding how the modality of language, whether it’s sign or spoken, interacts with the different social skills that are a challenge in autism.
And the thing that I found was that some kids with autism would reverse the direction of their hands when they were signing. So instead of say, signing like fingerspelling, which is when people represent English words on their hand and spell them out, which we have to do for certain say names, things like that, fingerspelling is typically articulated with the palm facing the person that you are addressing. What I found with these kids with autism is that some of them actually finger spelled with their palm reverse so that their palm was facing toward themselves.
And that’s just not something that typical deaf kids do. It was totally unattested in the literature and it popped up in not all of the kids that I studied, but a decent subset of them. And so I thought, maybe this palm reversal in signing is actually the sign language equivalent of pronoun reversals. It’s a similar type of repeating something exactly as it is addressed to the child, instead of flipping it around and inverting it.
And so it shows how it might show up in pronouns and speech, but it could show up in the actual form, the direction of the hand in sign. It’s hard to prove whether or not something is an equivalent in one or the other, but it certainly was suggestive that the same underlying social deficit or difference might lead to two different manifestations in sign and speech.
Dr. Sharp: Right. It’s fascinating to make that jump and notice that, not correlation, but just the parallel, I suppose. I definitely wanted to ask about using the ADOS with kids who are deaf. You’ve written on that as well. So, a very open-ended question there, but can you just talk about use of the ADOS with deaf kids?
Dr. Shield: Absolutely. So, first of all, I should say, there are no standardized validated assessments for autism for deaf signing children. So, what do you do?
Dr. Sharp: Great question.
Dr. Shield: Yeah. What do you do? The ADOS is a gold standard instrument. It’s widely thought to be a very good instrument that can be used along with other things to make a diagnosis. We use it in research to confirm diagnosis to make sure that the kids that we’re looking at do, in fact, qualify as being on the spectrum.
The ADOS specifically says, “Should not be used for deaf children, do not count signs as words, et cetera, ” but we do use it with caveats by saying this is a non-standard administration because we think it’s a good tool, and otherwise, I’m not sure what we would do. We don’t want to reinvent the wheel.
There are certain elements of the ADOS that really don’t translate. So, for example, a response to name is one of the typical items. You call a child’s name and see if they respond, see if they look up, see if they look at you. There’s no equivalent of [00:40:00] that in sign because you don’t ever produce someone’s name as a way to get their attention. It wouldn’t make sense because if you think about it, someone has to be looking at you in order to perceive sign. So how do you get them to look at you by signing? It wouldn’t do anything.
In order to translate that item, well, we would need to systematically figure out how to translate this item and how it would correspond to the very precise scoring requirements of the ADOS. But I would suggest things like, does the child respond if you flicker the lights of the room? This is a common deaf attention-getter. Or if you wave your hand in their peripheral vision, do they turn their head? Or if you stomp your foot, do they lookup?
There are various attention-getters that are used culturally within the deaf community that could be used potentially as a translation or a substitution of this item, but it’s not straightforward at all. And so, for our purposes, we just eliminate this item, which means that the children actually have fewer opportunities to reach the threshold score to qualify as having autism. If anything, we’re a little bit conservative in who we include in our research because they have to really score quite high in order to be included because there aren’t all of the items that would be there on the normal ADOS.
A lot of the ADOS involves similar types of social behaviors, joint attention, and social reciprocity. And I think those things are broadly translatable. I would caution about using interpreters in ADOS situation or really in any assessment situation. And the important thing to understand about that, of course, I understand that in the real world, sometimes an interpreter is necessary because the clinician obviously doesn’t know ASL.
Things to be aware of though is that, that creates a more complex interaction. Instead of being dyadic between two people, it’s triadic between three people, which involves more complex shifts of attention and shifts of gaze between three people or for the child, between two people rather than just one person. And so, it makes a comparatively larger demand on their social skills and attention. For a child with autism who may already have challenges with say joint attention, this is complicating the situation somewhat.
The other thing to be aware of is how is the interpreter translating the items that you’re saying? Are they translating them the same every time? The ADOS is very standardized and it’s very important that things be administered in the same way. That’s why it’s so hard to become a reliable ADOS administrator and scorer. If you’re relying on an interpreter who does not have that credential, I think there’s a lot that could potentially go wrong or be lost in translation.
Then finally, let’s say the point, I just was talking about the palm reversals. That’s a potential sign. it’s a unique thing that some kids with autism do. It’s important for the interpreter to then be aware of potential signs of autism or things that they may or may not have any exposure to in their typical working, interpreting life. And so, if the clinician is aware of these things, even if they’re a nonsigner, they would be relying on the interpreter to report those things that are different about the child’s signing. I’m not saying it’s impossible, but it’s, it’s complicated. And it’s definitely important to understand that there’s a lot of room for error in those situations.
Certainly important to understand that a word-for-word translation of the ADOS into ASL is just not possible because English and ASL has such different structures. And like the response for name item I gave us an example, some items just don’t make sense in a visual modality. So, it’s definitely not a simple task, but in reality and clinical practice, I’m sure that it happens all the time and I think it can be done as long as both the clinician and the interpreter are aware of the possible pitfalls that can happen in that interaction.
Dr. Sharp: So, Aaron, I guess my question is, what do you advise for those of us in areas where we’re just not fortunate enough to live in an area with one of these experts, one of these handful of people with the expertise in autism and sign language and deaf kids. How do we modify our assessment or proceed with the assessment in the best way?
Dr. Shield: That’s a really good question. A really complex question. I think it is possible. I think I would approach it probably in the same way that you would approach an assessment with a hearing child, but with the aid of an interpreter or someone who is knowledgeable about the deaf community and can help you to understand if the behaviors that a child is showing are manifestations of autism or might be typical for a deaf child.
I should mention that there are somewhat different cultural norms in the deaf community for lots of things, including some basic behaviors like getting someone’s attention where say it’s socially acceptable in the deaf community to say, tap someone on the shoulder in a way that among hearing people that might be seen as intrusive of other people’s body space.
And so, I could see how a clinician who doesn’t know anything about the deaf community might interpret that as being socially inappropriate, but a culturally competent clinician or someone who’s consulting with someone who is culturally competent would understand that this would be appropriate for a deaf child.
So I think, using the tools that you have but with the aid of someone who does know ASL and who understands the different social or cultural norms of the deaf community could be valuable. Given that there aren’t any standardized assessments that have been validated for deaf children, you have to use the tools that you have, just with some sort of adjustment adaptation or caveat.
Dr. Sharp: Right. This may be a foregone conclusion, but I wonder, would it be standard practice to videotape these ADOS, for example, if we were able to later consult with someone who’s knowledgeable about deaf norms, or something?
Dr. Shield: Yes. Absolutely. First of all, for all the work that I do, we videotape because we’re observing visual language and visual behavior. We want to go back and see things that we might miss. But yes, especially if you’re a clinician and you don’t have access to someone who is knowledgeable about the deaf community or about ASL, I would say, absolutely videotape the assessment and try to get some opinion from an expert later. That’s a really good idea.
Dr. Sharp: Nice. Well, let’s see. I know, gosh, our time is flying. This is just so much good information. Got my brain really working.
I wonder, just maybe as a segue into resources and helpful information for folks to consider, do you know of anyone around the country who would do distance consultation if these cases do come up? If not, that’s totally okay. It’s a very small niche. I just wondered. For those of us out there, I’m sure people are thinking, who would I consult with if this came up? I wonder if that’s an option that’s available that you know of.
Dr. Shield: Yeah. Well, I haven’t asked anyone’s permission ahead of time to say this. I’m not sure. But I will say, there’s a wonderful group of clinicians in Denver, Colorado at Colorado Children’s Hospital and a wonderful group of clinicians at Boston Children’s Hospital. Both of those groups have several different clinicians who are both experts in autism as well as experts in deafness and ASL. Those are the two big ones that come to mind. I’m sure that there are others around the country that I’m forgetting, but those are the big ones.
Dr. Sharp: It’s good for me. I’m just an hour from Children’s Colorado.
Dr. Shield: Oh yeah. Well, my colleague and coauthor Debbie Mood is there. She works with with several people there who are also knowledgeable. I definitely have referred families to them in the past. I know Debbie is busy, which is my only, in mentioning her name.
Even on the school level, there aren’t that many programs at schools for the deaf around the country that also are equipped to handle children with autism. There are growing numbers. There are some programs that are now specifically dedicated to deafness and autism, but many of these families find themselves [00:50:00] between two worlds where either, the school can handle autism or it can handle deafness, but not both of them. I do think it’s getting better.
But in terms of resources, I’m not 100% up on what the best programs are, but I think the parents of these kids are, and there are two parent groups. There’s a group called Deaf Autism America which is a parent network which I would encourage any listeners who are interested to find if they are in need of resources either as a clinician or a parent to get in touch with them and see if they can direct them to appropriate resources.
Dr. Sharp: Great. And are there any other books, websites Facebook groups, or anything else that might be helpful for folks even to just start to learn about this area, aside from your own research, of course, which I’ll link to?
Dr. Shield: Yeah, there’s starting to be more resources on the web. My stuff is not exactly a layman’s guide to deafness and autism. Although I do hear from parents who, similar to what you did, just google deaf autism and my work comes up. It’s changing all the time. I would say probably just do what you did. Google it and see what’s current because things change really quickly.
There used to be a really active Yahoo group, which is no longer active and names change. There have been a couple of retreats for families during the summer that are a way for parents to get together and share ideas and resources as well as for the kids to get to know each other. But that is also sporadic. The last one was two years ago and I’m not sure when the next one is going to be.
Dr. Sharp: I see. Okay. And if people, well, first of all, if people have questions, are you open to being contacted? And if so, how might people do that?
Dr. Shield: Absolutely. I actually hear pretty regularly from parents who just come across my work and are either interested in participating in research or want to get more information. So I would say either go to my website, which is languageshield.com. I’ve got a contact me form there. Some people find my old site on the BU website, which is bu.edu/deafautism. Let’s see if it’s still there. Yeah. And actually, that does have a resources tab, although I’m not sure that those are all current, but there’s also a contact us tab there. I still do receive that email.
Dr. Sharp: Nice. Thanks. All right. Well, I really can’t thank you enough. Like I said, I just feel really fortunate to have gotten some of your time to talk through a pretty nuanced niche area of assessment. And to find someone who’s done so much research is really a blessing. So, thanks for coming on. This is a great discussion. I think people are probably going to take away a lot.
Dr. Shield: Well, thank you for inviting me. It’s really nice when people are interested in this research. However niche it may be, I do hope that it will be useful for others.
Dr. Sharp: Cool. All right. Thanks, Aaron. Take care.
Dr. Shield: All right. Thank you.
Dr. Sharp: Hey everybody. Thanks again for checking out this episode with Dr. Aaron Shield. I really enjoyed this. I hope that y’all did too. I learned a lot. The show notes for this episode are pretty extensive, I think, and pretty [00:54:00] helpful. So definitely check those out for any of the resources that we mentioned during the interview. And like Aaron said, there are two different groups here around the country that specialize in this type of assessment. So, don’t hesitate to reach out if you need help.
All right. Thanks for listening, y’all. If you haven’t rated, reviewed, and subscribed to the podcast, I would be honored if you would do that. Any ratings on Spotify or iTunes just help get the podcast out there and spread the word and help grow the audience. So always grateful for that.
All right, y’all. I hope you’re having a good week. I will see you next time. Bye-bye.