When the Bengals were in the Super Bowl in January 2022, I wrote a couple of short pieces looking into the origins of their ubiquitous cheer, "Who dey!" You can find them here and here.
I recently appeared on Dr. Jeremy Sharp's podcast, The Testing Psychologist. You can check out the podcast here, or read the transcript below. (BIG THANKS to Dr. Sharp for providing this transcript to me so that I could make the podcast accessible to deaf/hard-of-hearing folks!)
Here are a few topics that we touch on:
Dr. Sharp: Hey y'all. This is Dr. Jeremy Sharp, and this is the testing psychologist podcast. The podcast where we talk all about the business and practice of psychological and neuropsychological assessment. Hey, welcome back. Today's episode is going to be a good one. I know I say that a lot, because I believe it, but today's episode is a little bit unique for a couple reasons. One is that we're talking about a fairly niche area in assessment - that is 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. So, a little bit about Aaron: Aaron got his undergrad degree in music and romance languages at Wesleyan University then moved to Texas to pursue a doctorate in linguistics at 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, was able to study sign language and cognitive development, got his PhD in 2010 and then did a postdoc in Psychology at University of Chicago and Boston University and in communication sciences and disorders at Emerson College. So he's 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 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 development of language and social communication and kids with autism. So stick around. This is a good one.
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Hello everyone and 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 a very valuable but admittedly maybe 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 and nonverbal kids in general. So I am really excited about this conversation. Aaron, welcome to podcast.
Dr. Shield: Thank you for having me.
Dr. Sharp: Yeah, 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 are prominent in their 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 to an ADOS with a kid who is hard of hearing, and just got to Googling what does language development look like with kids on the Spectrum who also are signing and is sign language - that led down this whole rabbit hole of is sign language prone to the same sort of nuances of language that we typically see in kids on the Spectrum, and your research was at the top of the list and you thankfully agreed to come on and chat about that. So yeah, I really appreciate it, I'm excited to talk to you
Dr. Shield: Yeah, me too.
Dr. Sharp: So, just want to start out - especially with a niche like this. What led you to this, and why this work specifically?
Dr. Shield: Yeah, so it's been a long circuitous journey for me. I should say off the bat, I'm a linguist, I'm not a psychologist, and my background before graduate school was in romance languages. I've always been interested in language, language acquisition, and I've always been sort of 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 - 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, and I didn't know anything about autism at the time, but I started thinking and wondering 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 peoples faces. And so that presented this sort of paradox to me, might children who are signers who also have difficulty with certain social skills, how would they perceive language? How would they be able to acquire a sign language? And was it different from, say, a hearing 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, and I looked around and when I Googled in 2007, there was actually almost nothing, and so my dissertation advisor Richard Meyer 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 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 by their deaf parents. So that's really only five percent - five to ten percent 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. So those kids are very, very rare, and I managed to find about 10 of them for my dissertation. Who were located around the United States, and and started observing what their language looked like. And by language here, I do mean sign language. I don't mean speech. I didn't look at speech at all. And 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. So, I think your question was how I got into this. It was kind of by chance, but I've followed it and I continue to follow it as as far as I can.
Dr. Sharp: Yeah. I was really struck by the complexity of the research you're doing, and by which I mean there are so many layers and the different facets of language in autism and signing and autism and language development and kids who were ... 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. So, there are there are many things about it where we just needed to document what does sign language acquisition look like in kids with autism, and there were other things where we could ask more theoretical questions, and I've tried to explore both of those, and then I think maybe more to the interest of your audience, 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 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 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 illuminate more everyday situations that the parents of the kids that I see always want to know "how do I do this, or 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 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 this first few minutes of the show. First of all, most importantly. Were you in Austin in the to 2007-2008 year?
Dr. Shield: I was.
Dr. Sharp: Very cool. So, I did my pre-doctoral psychology internship at UT Austin over the course of that year. So, who knows, we may passed each other on the street some day.
Dr. Shield: How funny.
Dr. Sharp: Yeah, I'm struck by - 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. Yeah. Okay. So we got that out of the way, we're connected somehow. So, 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 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 - when I say deaf or hard of hearing, are those the terms that are appropriate and and so forth. So, just kind of some of those basics if you wouldn't mind.
Dr. Shield: Sure, absolutely. First of all the field of sign language linguistics is is relatively young. It wasn't until 1960 that any linguists or anyone considered sign languages actually languages. Before that, it was assumed that that languages had to be spoken. But in 1960 a linguist at Gallaudet University named Bill Stokie started studying - he was a hearing researcher, and he had a number of deaf research assistants working with him, and he started studying what people at Gallaudet, which is a university for the deaf, were doing with their hands and he discovered systemic 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 signed - produced visually, 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 the medical deficit. Deafness is usually conceived by people by 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 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 and I definitely do not mean that here. I hope that clarifies a little bit about terminology.
Dr. Sharp: That 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 language is developed pretty much like spoken languages. That is they are acquired naturally and without explicit instruction through exposure from caregivers or others in the environment. You can acquire a sign language - basically any child can acquire a sign language. You don't have to be deaf to acquire it and sign languages basically develop in the same order of milestones and stages as spoken languages. It's thought there might be a slight advantage in terms of age of say 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 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, and 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. You're anticipating one of my next questions about the neuroanatomy of sign and spoken language. 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 what do those look like?
Dr. Shield: In terms of neuroanatomy?
Dr. Sharp: Yeah, if that's what you were referring to - you said there were maybe some subtle differences.
Dr. Shield: Oh yeah, well with modality differences I also was referring to to, say, differences that we see in the in the difficulties, say, 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 was some really important work on deaf signers who had brain lesions and what was really amazing about this work was that it showed that signers who had lesions in the left hemisphere in 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 you know, 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 signed languages given that signed 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 left hemisphere in Broca's area you produce short telegraphic choppy signings in the same way that a hearing person with a lesion of Broca's area would produce short telegraphic choppy speech. Similarly for Wernicke's area, fluent but contentless or difficulties with semantics with lesions in Wernicke's area. 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, with 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. Yeah, just in the interest of talking through some of the basics and moving forward, you mentioned before we started recording a couple of myths about sign, and I would love to just touch on those, because both of those things are things that I would have gotten tripped up on, and probably believed. So yeah, could you talk about some of the myths that people think about sign language and development?
Dr. Shield: Sure. Yeah. There's probably two big myths that as a sign language researcher I find I have to explain all the time. And the first one is the idea that ASL American sign language is a translation of English. And 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 contact - 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. And 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 in written English, which would be 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, in our case, the first school for the deaf was founded by a guy named Thomas Hopkins Gallaudet for whom Gallaudet University is named, and he went to Paris in the 1800s and observed a deaf school there and brought back a French man, Laurent Claire - 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 sort of the second myth, which is that all all sign - 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, and any non-signer knows if you watch ASL or any other sign language, you can't understand it. You might be able to guess what people - 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 is that - 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 are 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 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 my forearm upright with a little shake of the wrist - it sort of represents the 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 that aren't really - they are not direct translations. But probably the easiest thing to consider is that the syntax is completely different. By that I mean the grammatical structure and word order, so, just to give a basic example, In English a sentence like, "have you been to France?" In ASL would be something like the verb touch, 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 finish 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, which you know is not how we make verbs past tense in English. So I think it's a good example of how independent the 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 had 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 nonverbal 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 spoken language? Is that something that you can speak to it all?
Dr. Shield: Yeah, absolutely. So this sort of 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 has 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. But 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 the language acquisition device or mechanism is quite robust, right? So people used to also ask these questions about bilingualism. It used to be thought that exposing a child to 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, that would be 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 either learn some sign or to have some exposure for your kid to a visual form of an accessible form of communication.
Dr. Sharp: Sure. All right. I think we've laid a lot of groundwork and I would 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 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. So, 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 nonverbal or minimally verbal. 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 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 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 minimally verbal kids with autism is just starting and getting better with better research methods and neuroimaging and 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 and the various ways that we might show that we have a - you know, a certain attitude about the linguistic message that we are conveying. Other things that pop up, in both signing kids and speaking kids with autism, echolalia - repeating the utterances of others. I've shown, I've documented in a paper with Francis Cooley, who is now grad student at UT Austin in Linguistics, and Richard Mayer who's a professor there - the 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 that really jumped out - if I could interject here for a second, in the the kid I was working with that I mentioned in the beginning, is that I noticed that during the assessment - that he was echoing quote unquote the signs from his parents, and that's what really got my brain firing, and it is a very naive perspective, but the light bulb came on. I was like, "oh my gosh, what else is going on here?" And it really led me down this path of what other pragmatic challenges do deaf kids show, you know?
Dr. Shield: Yeah, absolutely. And so that kind of 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 auditory 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: Right. Yes. It'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 - but there's these components certainly of using the ADOS with kids who are deaf, which I'd love to touch on, but then the like 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. It is happening.
Dr. Shield: Yeah, actually if I could talk about the pronouns for a second that was kind of an interesting finding. So 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, and from the very first report by Connor in 1943, there was mention of using the pronoun "you" to refer to one's self. So I think in Connors 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 "me" as "I," not as "you" and vice versa. It's kind of 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. So 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" and "you" which really don't give an indication of what they mean. They are arbitrary words.
Dr. Sharp: Very abstract.
Dr. Shield: In a realistic sense, arbitrary. You can't tell what they mean just by the sounds.
Dr. Sharp: Right.
Dr. Shield: And 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, I thought maybe deaf kids with autism would be able to use these sign language pronouns which are so transparent, but instead they tended to avoid them, but I also was looking for a 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 kind of a way of understanding how the modality of language - whether it's signed or spoken - interacts with the different social skills that are challenging in autism. And the thing that I found was that some kids with autism would reverse the direction of their hand when they were signing. So instead of say signing like finger spelling, 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. Finger spelling 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 reversed, so that their palm is 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 kind of shows how it might show up in pronouns in speech but it could show up in the actual form, the direction of the hand in sign. We haven't - 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. Yeah, it's fascinating to make that jump on notice that - not correlation, but just the parallel I suppose. Right. I definitely wanted to ask about using the ADOS with kids who are deaf, you've written on that as well. So 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? 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, and we use it in research to confirm a 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," etc, but we do use it with caveats, and 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, 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 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, 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 look up? There are various attention getters that are used culturally within the deaf community that could be used potentially as a translation or 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. So 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. But a lot of the ADOS it 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 an ADOS situation, or really in any assessment situation. And the important thing to understand about that - of course, I understand that in in the real world, sometimes an interpreter is necessary, because the clinician obviously doesn't know ASL. The thing 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. So, 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 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. And finally, let's say - 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 is important for the interpreter to then be aware of potential signs of autism, 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 there are non-signer, they would be relying on the interpreter to report those things that are different about the child signing. So, 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 for error in those situations. It is certainly important to understand that a word for word translation of the ADOS into ASL is just not possible because English and ASL have such different structures, and like the response for name item I gave as an example, some items just don't make sense in the 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, 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: Yeah, that's a really good question and 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, say, for some basic behaviors, like getting someone's attention, where 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 kind of 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 if - would it be, say, standard practice to videotape these ADOSs for example, if we were able to later consult with someone who is knowledgeable about deaf norms and so forth?
Dr. Shield: Yes, absolutely. So, first of all, for all the work that I do, we videotape, because we're observing a visual language, visual behavior and 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 sort of opinion from an expert later. That's a really good idea.
Dr. Sharp: Nice. Well, let's see. I know our time is flying. This is just so much good information, you've got my brain really working. I wonder 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? And if not, that's totally okay. It's a very small niche, but I just wonder 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 a an option that's available that you know of?
Dr. Shield: Yeah, so, well, I haven't asked anyone's permission ahead of time, so I'm not sure, but I will say there's a 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 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, and I'm sure that there are others around the country that I'm forgetting but those are sort of 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 my colleague and co-author Debbie Mood is there and she works with several people there who are also knowledgeable about - I definitely have referred families to them in the past. I know Debbie's busy, which is my only hesitation in mentioning her name, but you know, there's - even on the 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 sort of 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 a hundred percent up on what the best programs are, but I think the parents of these kids are, and there's a couple of 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? 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 is starting to be more resources on the web. My stuff is not exactly a layman's guide to deafness in autism, although I do hear from parents who, similar to what you did, just kind of Googled "deaf autism" and my work comes up. So it's kind of changing all the time. I would say probably just do what you did and Google it and see what's see what's current because things change really quickly and sometimes - 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 a couple of years ago. 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: Yeah, 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, and I've got a contact me form there, or some people find my old site. On The BU website, which is BU.edu/DeafAutism.
Dr. Sharp: Great.
Dr. Shield: 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, and that I still do receive that email.
Dr. Sharp: Nice, thanks. All right. Well, I really can't thank you enough. This is - 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, yeah. Thanks for coming on. This was a great discussion, and 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 are interested in 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: Alright. 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 helpful. So definitely check those out for any of the resources that we mentioned during the interview. And like Aaron said, there are a couple 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.
For World Autism Awareness Day (April 2), the Miami University Libraries made a video featuring me and my student research assistant:
If you look over Hillary Clinton's left shoulder, you'll see two guys in red t-shirts (my hubby and me). An exhilarating day watching two of the most impressive political figures in our country today.
I started using the language-learning app Duolingo about a year ago, and wrote extensively about its strengths and weaknesses on this blog last July. Initially I was using it to brush up on a few languages I'd learned previously, like French and Spanish, but since August 2015 I have also been using it to learn a new language I'd never studied before, Swedish. I'm currently about two-thirds of the way through the Swedish course, and wanted to add to my previous thoughts about the efficacy of the app or lack thereof. Here are my take-aways, nine months in.
2) It doesn't take the place of face-to-face conversation.
About a month ago, I was feeling pretty confident about my Swedish abilities. I could read random stuff online and figure most of it out, and I could also understand the spoken sentences produced by the app. So I invited a friend of mine who speaks Swedish to lunch. It went something like this:
HIM: Hur går det?
(He'd simply asked me "how's it going". The app hadn't taught me that.)
So, although I can talk about strawberries (jordgubbar) and turtles (sköldpaddor), I realized I was missing the stuff that you probably learn right away when you actually talk to someone: niceties of conversation. I would recommend adding a face-to-face conversation component to your online study, to help you fill in the gaps that the app will inevitably leave.
3) Difficult sounds.
Swedish has this weird sound which is represented in its orthography with the digraph "sj". In the Duolingo app, it sounds closest to me like an English /f/, so I thought that the word for seven (sju) sounded like "foo". Turns out, it's technically a voiceless postalveolar-velar fricative (IPA nerds: /ɧ/), which means that there are two places of articulation, one with the back of your tongue approaching but not quite touching the top of the back of your mouth (the velum), and one just behind the ridge behind your teeth (the alveolar ridge). The resulting sound doesn't exist in English, sounds kind of like an /h/ mixed with an /s/, and is damn near impossible to learn with an app. Long story short, you may need further help than the app can give you to figure out how to pronounce sounds that don't exist in your language or that are particularly difficult to articulate.
Take-home message: Can you learn a foreign language using Duolingo? I think the answer is still yes, provided that you do two things: 1) keep practicing your weak skills, increasing the proportion of review the farther you get into the course, and 2) find a friend to actually practice conversation with who can also help guide you on pronunciation.
Most of the time academia is a lonely business, but every once in a while the larger world takes notice. This past weekend Autism Speaks published a nice, long post summarizing the work I've done since I began researching deaf children with autism eight years ago. Feels great to be recognized and to see the progress that's been made over the past few years!
UPDATE 2/27/16: Education Week covered our session at AAAS (American Association for the Advancement of Science), which also featured Peter Hauser, David Quinto-Pozos, and Jenny Singleton.
As a language lover and polyglot, I've long yearned for an easy and accessible way to teach myself new languages. Growing up in the 80's, I used to take out cassette tapes of French lessons out from the public library and listen to them on my Walkman. And that was about it. My dinky local school offered French and Spanish classes, nothing else. This was before the internet, so there was no easy access to newspapers, magazines, videos, TV, or movies in other languages. Of course, these days everyone has ample access to endless amounts of online content in other languages. But it's still difficult to learn a language from square one without some kind of explicit instruction.
Rosetta Stone has been around for a number of years, and I've tried it out briefly, but never wanted to spend the money ($179 just for level one!) without knowing if it would be worthwhile. But Duolingo, the app for iPhone and Android, is free. I recently started using it and have been impressed with it for a number of reasons. As a linguist and unrepentant polyglot, here's my take on its strengths and weaknesses.
Babies are really, really good at learning languages, and they don't do it the way high school students do (i.e. with lots of focus on learning rules, and especially how to read and write). Duolingo does away with this tired old paradigm and treats us more or less like babies who can read, forcing our brains to learn grammatical rules without them being explained to us. So, for example, in my Swedish course I know that to say "a dog" you say "en hund" but to say "an egg" you say "ett ägg". There was no mention of grammatical gender, least of all "masculine" and "feminine" nouns, which tend to just make everyone very confused about how inanimate objects can have sex (they don't). The explicit explanation of underlying grammatical rules is what we in the linguistics biz call metalinguistic knowledge, which is nice to have if you're a linguist, but fairly useless if you're trying to learn to speak. Your smart brain is hard-wired to learn language, and is pretty good at remembering that for some nouns, the word for "a/an" is "en" and for others it's "ett". It's the way we're built (though it does require a lot of repetition; see below). And if you do want an explicit explanation, there are ways to get to it, but it's not front and center as with most language courses.
Lots of exposure to native pronunciation.
Native speakers build Duolingo, and you get a lot of exposure to their pronunciation, which is a lot better than your high school French teacher's probably was (speaking from experience here, no offense Mrs. Lacey). There's just no beating a native speaker, even if we might never be able to mimic exactly how they sound.
It fits right in with your phone-addicted lifestyle.
I admit it: I am addicted to my iPhone (and I semi-hate myself for it). But Duolingo fits in nicely with the modern lifestyle: it's on your phone, which you are on constantly anyway, and doesn't require you to go to a class or take out a book or go out of your way. It's right there in your pocket, and you can do a unit in just a few minutes while waiting for the train. They've even programmed it with some game-like incentives (lose hearts if you make a mistake! earn "lingots" if you pass a unit!) to tap into your unhealthy Candy Crush addiction. The great thing about this is that it's easy to do a little every day, which is key to learning a new language -- you have to reinforce what you've learned or you will forget it very quickly. By making a smartphone-based platform, the designers of Duolingo have made it easier than ever to help motivated learners achieve their goals.
The teaching methods can be subverted with other strategies.
Duolingo essentially relies on just a few core methods for teaching you a language skill (say, a set of vocabulary words like colors or numbers, or a grammatical concept like the past tense):
The problem here is that only number 6 requires the learner to actually retrieve something from memory and generate it in order to answer the item correctly. For numbers one through five, the learner can rely on all kinds of other strategies to answer correctly. For example, for number four (translation of a foreign sentence into English, with the English words provided), there is often only one possible English sentence that can be made of the words provided. So, you don't have to actually know anything in the foreign language at all -- you can just use your deductive reasoning to piece together the English sentence. This is just not possible when you are faced with the terrifying blankness of translation without prompts, as in #6. It forces you to dig deep into your memory and see what has stuck. Now, I understand that most of these strategies are not really about testing; they are about teaching. But I worry that learners can too easily beat the system by relying on other learning strategies that have little to do with language.
All in all, I am super jazzed about this app. It's been great for practicing the languages that I already know, and has been pretty decent for starting to learn ones that I didn't. Though I really wish I had a real live Swedish teacher to explain to me WHY the 'sk' combination in Swedish is sometimes pronounced like an 'f'. But I guess I could just Google it. Brave new world, I love you.
Here's some more, courtesy of Google Images:
Amazing, no? And inside the exhibit the fashions were even more gorgeous and astounding. We appreciated everything about how the exhibit was laid out, and felt that we understood so much about what Gernreich was trying to do. He was committed to liberation -- particularly sexual liberation -- through fashion. He played with female sexuality and with androgyny. He created clothes that were both sexual and sexless. He appeared to be both a provocateur and, we imagined, a libertine. We had fun speculating about the relationship between Gernreich and his muse Peggy Moffitt, and the photographer William Claxton, though (as far as we could tell) the exhibit had little to say of substance about the particulars of their configuration(s).
When we got home, we wanted to know more about Gernreich, so we googled him. We were both pretty surprised to find out that not only was Gernreich gay, but he was involved with Harry Hay, the founder of the early gay rights organization, the Mattachine Society. Via Wikipedia:
Say what? How had we missed this important information? In an exhibit dedicated to a fashion designer obviously committed to sexual liberation, how had we missed the fact that he was, in fact, gay? And even more important from the historical perspective, involved with the most important gay liberation organization of his time?
Well, I wanted to understand if this had been intentionally left out of the exhibit, so I tweeted at the Cincinnati Art Museum:
And, lucky for me, I got an answer from the curator herself (Cynthia Amneus) within just a few hours:
I wasn't around in the 1950's, but from what I gather, it wasn't so easy to be an out gay person back then. Gay people couldn't work for the US government or teach in the public schools, and the risk of losing one's friends, family, and career by openly admitting to homosexuality was very real.
[Aside: As to whether or not an artist's sexuality defines their work, I suppose it all depends. I would guess that sexuality is a defining characteristic for some artists, and not for others. To take just one (glib) example, was Picasso's love of women not a "defining" characteristic of his work? It figures strongly throughout his oeuvre and viewers' knowledge of Picasso's (hetero)sexuality will help them to contextualize and understand his work.]
Anyway, I replied:
To which Amneus replied by assigning me some reading, The Rudi Gernreich Book by Peggy Moffitt, to learn about "Rudi's own thoughts about sexuality and its irrelevance."
So I found the book at the Boston Public Library and took it out. From the Introductory essay by Marylou Luther, "Looking Back at a Futurist":
"In July 1950, while watching a rehearsal at [Lester] Horton's studio, Gernreich met Harry Hay, founder of the Mattachine Society, a 1950s forerunner of today's gay movement. From 1950 to 1952, Gernreich and Hay were lovers and Gernreich became one of Mattachine's seven founding members... He and the other founders resigned from the society in 1953 after an ideological schism. In accordance with the Mattachine oath of secrecy, Hay never revealed Gernreich's membership in the society until after the designer's death in 1985...
"That the man who tore up so many closets with his revolutionary clothes never came out of the closet during this lifetime says a lot about Gernreich and his times. In those years homosexuality was illegal and Gernreich himself had been entrapped before joining the Mattachines. Oreste Pucciani, Gernreich's life partner for thirty-one years, recalls, "Rudi told me he was stunned when a guilty verdict was returned. He had insisted on pleading innocent and demanded a jury trial. He told me that he looked in the face of every jury member, and one woman, who had seemed sympathetic earlier and whose support Rudi thought he could count on, turned to the wall to avoid his eyes." [emphasis mine]
WOW. Gernreich had been entrapped and convicted by a jury of his peers for homosexual acts. No wonder he never came out. I can only imagine the shame and fear he felt after this incident. (Oh, and by the way, he had a partner of 31 years! Who knew?)
Back to the essay in Moffitt's book:
"Peggy Moffitt, the designer's model/muse, says she and Gernreich "talked about sexuality a lot. His clothes were about sexuality. He told me about having belonged to the Mattachine Society, but not in a this-is-a-big-secret kind of way. He often told me that he felt a person's sexuality was understood and there was no way to hide it. I've known many gay men who seemed compelled to underscore their homosexuality, as in 'I'll-order-the-roast-beef-but-of-course-I'm-gay.' Rudi was not that sort of person. I don't think it ever occurred to him to come out of the closet because his sexuality was self-evident. He wouldn't have called a press conference to discuss his sexuality any more than he would have called one to discuss his brown eyes." [emphasis mine]
I can see how curator Cynthia Amneus could read this quote and decide that it was right and proper to omit the fact of Gernreich's sexuality (no longer a secret) from the exhibition at the Cincinnati Art Museum. But I disagree with the decision, and I believe that this interpretation is a misreading of Moffitt, and of Gernreich.
The fact is that omission is commission. The failure to overtly state Gernreich's sexuality in the exhibit is, in fact, to (intentionally or unintentionally) mislead viewers, because sexuality is always assumed and automatically ascribed. Since most people are heterosexual, that is our default assumption, unless stated otherwise. Amneus' interpretation of Moffitt's quote is anachronistic and ahistorical; it must be taken in context. For a man like Gernreich at his time, to declare that sexuality didn't matter was in fact to claim something like the following: although I may be sexually deviant, I am not a monster to be abhorred and ostracized. Nowadays, thankfully, the situation is far different. Today, we can make a far more sincere claim to the idea that "sexuality doesn't matter" because gay and straight people are treated much more equally in the eyes of the law (though not everywhere yet, including in Ohio) as well as in society more broadly. Information about one's sexuality can still be an important component in understanding a person's experience. It just need not be the only, or defining, one.
Gernreich's sexuality is also important in order to fully understand the exhibit: he played with women's bodies in ways that would read differently if he were a heterosexual man. Take the provocative monokini (1964):
Does it not change the effect and the perceived intention of the designer to understand that he was a gay man? Does it not aid the viewer's understanding to realize that his gaze upon the female body was not one of desire? This knowledge helps to contextualize the designer's choices and leads the viewer to suspect a very different motivation than if he were straight.
It's hard not to think that there are other cultural forces at work here. In 1990, another Cincinnati art museum, the Contemporary Arts Center, was brought to trial on obscenity charges for exhibiting the photographs of Robert Mapplethorpe -- the first time in American history that criminal charges were brought against a museum for obscenity because of a public exhibit. (The museum was found not guilty.) I wonder to what extent the memory of this trial still burns, consciously or not, in the minds of those charged with creating new exhibitions for the public.
But the times, they are a-changing: though gay marriage is still illegal in Ohio, the marriage equality case heard just a few weeks ago by the Supreme Court (Obergefell v. Hodges), originated in Cincy. A recent NY Times cover story highlighted this case, and the shift that Cincinnati is making from a traditionally Catholic, conservative city to a modern, more progressive metropolis. I'm sure that there are some growing pains there. Perhaps some of the more monied folk in town still have more (ahem) traditional values.
Despite an otherwise thrilling exhibit, Amneus and the Cincinnati Art Museum have done their public a disservice by omitting this crucial piece of information, which holds the key to understanding Gernreich's work, his commitment to sexual liberation, and his relationship to Peggy Moffitt and William Claxton. Blithely ignoring it is not to follow in Gernreich's spirit, but rather to recloset him and to keep his identity a shameful secret -- the opposite of the bright, bold, exclamatory and joyous notes so clearly revealed by this exhibit.
I'll end with one more quote from the essay in Moffitt's book:
"Pucciani explains Gernreich's reluctance to "out": "To 'out' yourself is one thing. To be dragged out is something else. Rudi never came out officially. He never felt the need. Until I retired from the University of California at Los Angeles in 1979, I lived by the principle of never make a point of it and never deny it. Intelligent people knew by the way I lived... When I asked Rudi why he had never come out, he said with that lilt in his voice he always got when he was joking: "It's very simple. It's bad for business."
I wonder if, in their decision to withhold this basic information about Gernreich from the exhibition, Amneus and the Cincinnati Art Museum didn't make a similar calculation.
Samsung has a new app, called Look at Me, which is purported to help children with autism make eye contact with others. It has released a video (partially in Korean with English subtitles) showing how the app works and with testimonials by experts as to its efficacy:
Great, right? Totally, at least in theory. I think that smartphones and tablets have tremendous potential for helping kids work on problem areas, and I welcome this advance. I also applaud Samsung's donation of 200 Galaxy tablets to Autism Speaks Canada with this app loaded onto it so that kids with autism can try it out. My only issue is in its main efficacy claim, that "60% of the children tested showed improvement in making eye contact." If you watch the video closely, you'll see in tiny type "*Results are based on parents' survey" (emphasis mine). UH-OH! This is not a scientific measure, so we don't actually know if the intervention is effective. Why? Parents may interpret "improvement" differently. Plus, we don't know if there is a placebo effect at work -- parents are invested in the child's improvement, and are more likely to say that they see improvement because they've put in the time every day over eight weeks using the program. I'd want to see some better-defined objective measures for improvement before I'd believe that this app works for its intended purpose. (Which, incidentally, I hope it does.)
The other problem -- so typical of the way that autism is talked about that we barely even notice -- is that 'success' is also framed in terms of the mother's feelings. Before using the app, the mom says "I feel like I'm a complete stranger to him", and we infer that this is due, at least in part, to her son's lack of eye contact. At the end of the video, the mom says "These days, I feel like he's changed for the better... I feel that he looks at me as a mother." Now, I do not mean to discount the mother's feelings in any way. But what's missing from this account is how the child feels. People with autism have told me that eye contact can feel painful, and that they are able to attend to a conversation and engage in it while looking down or away. In other words, eye contact isn't the same thing as social engagement, though that is how neurotypicals often interpret it. I think we need to keep our figurative eyes on the real goal here -- social engagement -- while being aware of the fact that we may have different feelings about and interpretations of behaviors associated with such engagement. So, yes, it's important that the mom 'feels' that her child looks at her as a mother due to increased eye contact, as this will likely increase her own bids for engagement. But it's also possible that the child has always seen her as a mother and loved her as one, whether or not he is able to make eye contact with her. (h/t Filip Lewandowski)
There was an extraordinary gathering of scholars at Stony Brook University earlier this week. Top researchers in the fields of sign linguistics, autism research, disability studies, anthropology, and education all met to discuss a possible "paradigm shift" in autism research, using the history of sign language research and its profound positive impact on the Deaf community as a model. I left the meeting feeling inspired, energized, even transformed. Here are a few brief take-aways now that I've had a couple of days to digest the experience:
1) The inclusion of people with autism in autism research is essential.
It's taken for granted that Deaf people have greater insight and intuition into their own language than non-native signers and hearing people, yet it hadn't occurred to me (DUH) that the same could be true of people with autism. During the meeting, the contributions of participants with autism led me to dramatic new insights that I would never have arrived at on my own.
2) A strengths-based model can be more elegant than a deficit model.
There's plenty to criticize about a deficit model of autism just based on the notion of stigma. However, even holding that aside for the moment, what most impressed me was the realization that, for my data at least, a strengths-based model of autism had greater explanatory power than a deficit model. This leads me to think that a reframing of autistic language from a strengths-based perspective could be more scientifically correct in the long run.
3) The language we choose to use to describe autism is important, and some changes are in order.
We use words like "deficit", "impairment", "failure", "absence", "delay", "risk", etc. all the time without hesitation. These words carry a lot of stigma, judgment, and could also just be plain old inaccurate. For example, one of the participants with autism (the extraordinary Ibby Grace) pointed out that the phrase "children at risk for autism" (in reference to younger siblings of autistic children) was not only stigmatizing but also imprecise. Why not just say "children with an older autistic sibling"? Why not, indeed?
I had so many a-ha moments at the conference that now seem obvious in retrospect. Sometimes, truly, it is most difficult to see what is right in front of our noses.