On the Mark: Dr. Kaitlyn Wilson

Get the transcript.

President Ginsberg: Today I am joined by Dr. Kaitlyn Dr. Wilson is an associate professor and chair of TU’s speech-language pathology and audiology department. She's also the program director of our new interdisciplinary doctoral program in autism studies, which is one of the first of its kind in Maryland and only one of a few in the country. Dr. Wilson received both her master's and doctoral degrees in speech and hearing sciences from the University of North Carolina at Chapel Hill, and she also completed a postdoctoral fellowship at Johns Hopkins University's Kennedy Krieger Institute before joining TU as a faculty member about a decade ago. 

Kaitlyn, thank you for being with us. And thank you for joining us and talking about a very important topic and an issue that that's increasingly in the news.

On autism and neurodiversity

President Ginsberg: You know, not a day seems to go by that either in one of the newspapers or one of the blog posts or one of the talk shows we hear people talking about autism. So I thought I'd ask with just a general question, because I think people really don't oftentimes understand what autism is. Tell us what autism is.

Wilson: Yeah. So, you're right. Autism is a hot topic, these days especially. And I think it's really important that we understand what autism is as a society. Autism is a form of neurodiversity. It's, a different way of being in some ways. So it could be that, there are differences in language development, in sensory processing, and in just overall, kind of processing of the world and all the different elements that we all experience.

President Ginsberg: So, you used the word neurodiversity, and that's a concept a lot of people, I think, are talking about when we speak about autism. What do we mean by neurodiversity? What does that mean?

Dr. Wilson: Yeah. So, it's just a natural, spectrum in terms of the way of being in the world, in terms of our neurological networking. Right. So, we have people with all different forms of diversity in their neurological system. So, whether it is autism or ADHD or Tourette Syndrome, you know, dyslexia, there are so many different ways of processing information in the world. And that's really what neurodiversity is about.

President Ginsberg: So, it really is about how people process information, how they perceive the world, how they react to those perceptions. Yeah.

Dr. Wilson: Yeah.

The austism spectrum and support needs

President Ginsberg: Interesting. You also used a word, too, that's often associated with, with autism. You used the word spectrum. And, I'm far from an expert in this, but I know that when people talk about autism, they usually don't talk about something specific, but talk about something that has gradients. So tell us a little bit about what it's meant by the spectrum as we speak about autism.

Dr. Wilson: Yeah, autism has been described as a spectrum. It really does encompass a broad range of individuals who experience the world in different ways. And so one way to think about it is in terms of support needs. And so when we think about autism, some individuals may have a high level of support need in certain areas and a low level of support need in other areas.

And so that's really where the spectrum comes in. So you may have somebody who has a high level of support needs in you know language. Yeah. Yeah. Right. Something like that.

President Ginsberg: Right. Right. So there really is a wide, spectrum is probably the right word, but a wide range, maybe is another word to use, of people who experience autism or have been identified as being on the spectrum, their abilities and their, who they are can be quite different.

Dr. Wilson: Exactly. Yeah. And it also includes such a wide range of strengths.

President Ginsberg: Yeah. Sometimes you talk about these issues as disabilities, but other people talk about them as different abilities. That's a concept that some people may have not heard of. But disability on the one hand and different abilities on the other.

Dr. Wilson: Yeah. And I think it can all go together hand in hand when you think about, you know, there's nothing wrong with needing support. So it's just, kind of, the gradient, like you said, of how much support and in what areas and the strengths that we have, the interest that we have and the abilities allow us to capitalize on those.

Right, right. And ideally, that's what different support systems are doing, is capitalizing on the strengths, right to support in the areas of need.

An increased understanding of autism

President Ginsberg: Yeah. You know, as we think too, about the spectrum, about this wide swath of people who identify or identified as being somehow on the spectrum that's identified as autism, we've seen a dramatic increase, it seems, in the number of people who identify themselves as being on that spectrum or have been identified by others as being on the spectrum.

And there's different ways of thinking about that. But what's accounted for that. I mean the, the, I guess the, the increase is the way to say it of people who now find themselves of, seeking care and seeking treatment and seeking intervention for these kinds of issues.

Dr. Wilson: Yeah. Well, what science is telling us so far, and we don't have all the answers, but what we see as the most likely, underpinning of that is that there's such an increased awareness and understanding of what autism is. There's also a greater understanding of what autism looks like in other genders other than males, which is a change.

President Ginsberg: It’s been a predominant male issue.

Dr. Wilson: It has yes, it's looked like it, right. But it's been you know, there have been many undiagnosed, non-males who are, who are now realizing, that they perhaps are autistic as well. And that's giving them some answers. And then there are a lot of people who are kind of exploring through self-diagnosis. Diagnosis is something that can be restricted to those with the means and the insurance and the, transportation. And, you know, so it's a little bit of a privilege to have a medical diagnosis.

New diagnostic markers

President Ginsberg: Right. Well, knowing that there's no one template or no one threshold to determine if one may be on the spectrum with autism, what are some of the behaviors or some of the signs, maybe some of the symptoms, perhaps in the grander sense that families may want to be on the lookout for with, with their children or other members of their family?

Dr. Wilson: Yeah. And there are, there are gold standard diagnostic tools out there, that are helpful in identifying, but are also a little bit restricted in some of the things we're starting to understand more like other genders. You know, what those tools and what checklists that developmental pediatricians use, include, are looking at things like language development, like sensory experiences and overwhelm in the world, related to some of those different things that are coming into the neurological system.

So, you know, those kinds of areas can be really important. When we look at very, very young children, there could even be, some physical traits or abilities that are showing likelihood as being some, sometimes markers of potential autism.

President Ginsberg: Some physical traits you're saying. What are some of the physical traits?

Dr. Wilson: Yeah. So, you know, there have been studies that have looked at infants and just even looking at things like, this is some of the work that's come out of Kennedy Krieger and Johns Hopkins as well. Yeah. looking at things like head lag. So if you have an infant and you, pull them from lying down to a seated position.

Yes, that kind of postural control. So there are and there's a lot of examination of different kinds of markers. At Towson we aren't doing as much of that type of work. That's happening at other places. We look more at adults and the kinds of supports in employment and community-based programing that can be beneficial.

Towson University research findings

President Ginsberg: Yeah. I want to get into, to two areas around that and get some of your thinking about it. One is what if, being we are a research university, what some of the research is telling us and what are some of the learnings that we've had in the field about autism? There's been dramatic developments over the last decade in our understanding of autism.

What are some of the research findings and what have we learned? And maybe also what is it that we are seeking now to yet begin to understand even more?

Dr. Wilson: Yeah. Well, you know, what I think is so interesting, and I'm not sure many people are aware, but the first person diagnosed with autism in Maryland here at Johns Hopkins just recently passed away. So it's been such a short period of time that autism has been investigated and really explored. So, so much has been learned. You're right.

President Ginsberg: Wow, in a very short period of time.

Dr. Wilson: In a very short period of time. Yeah. And I think what's happened over the last, you know, five to 10 years is a really important shift in the autism research community. And understanding that autism is a form of neurodiversity and that there are areas that for so long we have been trying to change, you know, whether it's eye contact or just, you know, a way of being in the world that we're now seeing is not beneficial to try to change those things.

But really we should be working on, you know, addressing the areas that are most important to families, to individuals. and so that's been a real shift in how we talk and think about autism as well. And to be a more neurodiversity- affirming autism community.

The myth of "high functioning" versus "low functioning"

President Ginsberg: Yeah, yeah. And I was looking at what some people are talking about in, saying about autism. And there's Steven Shore, who is a professor, I'm not sure what university, but an autism advocate, was recently quoted as saying, “If you met one person with autism, you've met one person with autism,” so that there really are broad differences in ability, broad differences and functioning from, frankly, some people who are, not as highly functioning people who are very, very highly functioning. And given the work that you've done working with adults, I'm sure you see that all the time.

Dr. Wilson: Yeah, in special education and, and that is a quote you hear often in the autism world—you met one person with autism. And it really is true. Everybody is so different. Just like anybody else, that we all have such different strengths and interests and support needs. But autism is a broad spectrum in that way. You know, I think one thing that we're also finding is, you know, this language that we use about autism is so impactful for families, and for individuals as they start to, you know, work through an autism diagnosis for their child, for example.

So you mentioned functioning, high functioning. And this is another area that we're really evolving in, in terms of thinking less about high and low functioning, which is often been a terminology used to talk about individuals with autism and to see that that can be so limiting.

President Ginsberg: High and low functioning.

Dr. Wilson: Yes. To think about it in that way, because as we were talking about the spectrum is, you know, you may be really doing great in one area, but need supports in another area. Yeah. And so one, one label, can sometimes backfire. So somebody who may be described as high functioning may feel that they don't they shouldn't ask for supports when really they're craving and needing supports in a number of different areas.

So what we're finding is that it's just so nuanced and variable, this experience of autism, and I think as practitioners and professionals out in the schools, in the clinics, this is such a great and important shift for us to think about that and to serve our students, and clients better.

How genetics play into autism

President Ginsberg: It seems like people are searching also, families in particular, but others are searching for what causes this. What's the, what's the root cause? What's the genesis of autism? And I know that's a hard question to ask and even a harder question to answer probably. But do we have any clue about what the, what the, the precursors of this are and, yeah, what that's about.

Dr. Wilson: Yeah. Well, what science is telling us is that, autism is highly genetic. And so we know that a lot of, what's going on with, you know, where autism comes from is genetic. makeup. that could be passed down or it could be, sometimes there are de novo mutations that happen after conception.

So genetics is a big part of it. And then the rest is environmental factors. And there are a lot of hypotheses and there's a lot of examination of what those factors could be. So, you know, there are many things that are being explored in that way. But even when we talk about genetics, it's not simple.

There are many, many, many, many genes involved. So it's not ever going to boil down to one gene or just a handful.

Autism interventions for aging adults

President Ginsberg: So let's talk about the treatments, because people with autism we've talked about when you've seen one person. You've seen one person, as Stephen Shore talks about. That suggests, though, that the interventions the, I don't want to use the word treatment, but I’ll use it advisedly the, the supports, that people with autism might be provided to them probably come in different forms and shapes and sizes also.

Dr. Wilson: Yeah. Oh, yeah. 100%. Yeah, yeah. So, you know, we have children, we have infants, we have school age children, we have, young adults. And as we move further and further into this field, we will have aging adults, right? We already have aging adults who are autistic. And so the kinds of supports that are needed vary widely.

Right? So we have different fields that come together. We have music therapists, we have speech-language pathologists, special educators. You know, so it's endless. The fields that come together and that's part of, you know, I know we'll talk about this later, but it is part of why we develop this doctoral program to be an interdisciplinary one is because it's really not a field that should be studied in a silo. It's great to have all of these fields talking to one another.

TU's autism studies program

President Ginsberg: So you really can't come at this from one perspective. You have to come at it from, from a variety of angles, if you will. Ideally, ideally, yes, ideally. And well, as long as you raise it, let's talk a little bit about this because Towson is one of very few groups of universities in the country that now has a doctoral program focused specifically in autism. 

And your program, which you've developed, does just that. It comes at this from a variety of perspectives, right? It has faculty from a variety of fields and disciplines, and talk a little bit about the training and the program and how it is you've organized it.

Dr. Wilson: Yeah. So it is it's been a group effort. And, faculty across colleges and departments at Towson University have worked together to develop this program and what we've tried to do is make it in individualizable for all of the students that come in. So we have students who come from a social work background or a speech-language pathology background or special education, a whole, whole wide range of backgrounds.

And as they come in, they have different goals and interests. So we have them engaging in coursework, surrounding autism research methods and then also in areas of their specific interest. So if they come in and they want to study, you know, technology and math education and how it overlaps with autism, we can do that. Or if it's about language development in autism, we can do that. So that's been our goal.

The Hussman Center for Adults with Autism

President Ginsberg: So it really comes, you have to really come at this, as I said, from a variety of angles. And we have here at Towson really a treasure of riches. We have a doctoral program training the next generation of practitioners in the field, next generation of researchers who are, by the way, trying to research autism from also this cross-disciplinary perspective.

But we also have the Hussman Center, a center that provides support and care for people with autism. So, tell us a little bit about the Hussman Center, because it's really quite unique.

Dr. Wilson: Yeah, it's, it's a wonderful center. So our Hussman Center for Adults with Autism has been around for many years. And they, serve our community, not only the Towson University community, but the broader community and provide such a wide range of programs. So whether it's woodworking or theater improv or a men's group. So the programs themselves are dictated by the interests of the participants in the center, and folks come for social engagement to find one another and to just come together and learn new skills. Right? Yeah.

President Ginsberg: And this, this program is primarily for adults.

Dr. Wilson: Yep. Yeah. Any, any age of adult. It's also an educational opportunity for our students at Towson. So we have students from, for example, our speech-language pathology program who come in and develop programming and work alongside these adults, so that they can learn, on both sides. And that's been a wonderful opportunity both at the undergrad level and the grad level.

President Ginsberg: So it's also a, I suspect, a place where there's research being conducted to try to better understand the phenomena of autism. So that's kind of remarkable. It has really three missions that it seems like. One is to provide care and support for people with autism. Two, it's a training center so that our students could have real-life, practical experience supervised by professionals such as yourself and, and third, it's kind of a living laboratory, living laboratory to understand better the phenomena of autism. That's fabulous. Yeah, that's, and we serve quite a few adults annually with autism there. Yes.

Dr. Wilson: Yeah. Yes. Broad, a broad number. And so it's not just our programming but there's a regular social group that comes together, and we can have over 100 individuals come and just enjoy being together.

Support for autistic students at TU

President Ginsberg: It seems like one of the challenges that some autistic persons have is in that domain of communication. Some from a wide spectrum, it seems, from being uncommunicative, and there are autistic people who who are not very communicative to people who are highly communicative.

Dr. Wilson: Of course, as a speech-language pathologist, that's my favorite thing to talk about. So, you know, I think what's really great and interesting to think about is the different ways in which, autistic individuals can communicate and how, the Hussman Center and our other programs do, celebrate that. So whether they're communicating verbally or through gestures or sign language or coming in and using what's called an augmentative and alternative communication method, yes. Right. So that could be something like sign language or it could be something like technology, technological device… enhanced, right, technology. So that's part of our programming, is that we support that.

President Ginsberg: And not only we're supporting students or people with autism, but we're giving our students an opportunity to learn how to use those same skills and techniques.

President Ginsberg: Yes. Yeah. That's, that's really fabulous. It's that, to I think in some of what I've read, that structure is important for folks with autism and it seems like having a place to come, having an environment that has supports built in and that understands the uniqueness of each of the individuals is exactly that kind of supportive environment.

Dr. Wilson: Yeah, yeah, the structure and routine I think that the programing offers is very beneficial. And just having that set place of where you can go to see your friends, to see your community, whether it's the Towson students they're looking forward to seeing or the other, participants in the program, it's really a wonderful experience and they come back semester after semester, many, many of our participants.

The importance of family education and support

President Ginsberg: I recently read something, somebody you may know, I'm not sure you do. Kerry Magro. Do you know Kerry Magro? She’s an, an author but also a person with autism and something I read just here today in preparing for this said that autism doesn't come with an instruction guide, but it does come with a family who will never give up.

Dr. Wilson: Yeah, yeah. And in some of our programs, there have been programs, at the Hussman Center and also through special education in and across the university, that have family education components. So we have a preschool program also at the Speech-Language Center at our Institute for Well-Being. Yeah. And there's a very important family education component there.

Yeah. Right. So that's always important, to provide that support and community for the families is key as well, especially in those early years.

President Ginsberg: Especially in those early years, for families to have a sense of, of mutual support. Let's talk about young children for a moment, because I think that's a, another topic that people listening probably have a strong interest in. And we talk a lot about early intervention. We talk about, kind of, early identification. What are some of the, the programs and some of the models and, and maybe some of the opportunities for families to, if they have a concern about their child, to, to find the right kind of resource early on?

Dr. Wilson: Yeah. Well, we here in Maryland are just, you know, swimming in resources in that way. We have so many programs and autism centers around that provide the type of early intervention that you're talking about. So, what's ideal in those early years, like we talked about, is to have the family involved and for them to really be trained and educated in what they can be doing at home, because to spend an hour with a child in a room and then send them back home doesn't provide that support then for the other 23 hours of the day. Right, so that's a real key component. And you know, the research, of course, supports that family education is integral.

President Ginsberg: So, in a sense, not just identifying a child that might have some challenges but educating the family about what those challenges are and how they can be not only supportive but the, kind of, interventionists themselves with their family.

Family resources in Maryland

President Ginsberg: And there are resources available in Maryland for families to, to seek. How, how would a family go about finding those resources, Kaitlyn?

Dr. Wilson: Yeah, well, so we have, like I said, so many resources. There are autism centers at the Kennedy Krieger Institute, at Shepherd Pratt and many others. So, you know, the programs oftentimes are running research studies as well. So if you think about, CASSI, which is the autism center at Kennedy Krieger.

There are oftentimes programs for young children and their families to participate in that are tied to research studies and can be free for families to participate in, right, and really based on scientific evidence that's out there in the literature. So you can, kind of, know that you're getting something that's of high value. And that's a really important thing to have available in this community, to have something that's not sitting at the end of a year-long wait list but perhaps available to all.

President Ginsberg: And for families who have a concern about their child, what you're saying to me is profoundly important. They're not alone. Yeah. And there are not only resources available for them, but they're opportunities to engage with other families and as well as with professionals.

Dr. Wilson: Yeah. Yes. And that's, that's a big piece of what that programing often does. Right. So the programs that are serving and supporting young children will have that community-based programming for the adults as well for the parents.

The future of research

President Ginsberg: So as we look to the future, let me just pose, kind of, a futuristic question. You're one of the top researchers in the country also studying these issues. What are some of the big questions that, that researchers like yourself are beginning to think about, to, to raise and to try to, to learn about over the next decade?

Dr. Wilson: Yeah. Well, I think that what we're seeing is, there needs to be a shift from focusing on the younger population only to, and this is happening, but to moving into focusing on adulthood and even older adulthood.

President Ginsberg: Not, not you're not either/or but a both/and.

Dr. Wilson: Yes, exactly.

President Ginsberg: To understand that people with autism do live long, productive lives. Yeah. And that we need to understand the differences by, with any individual. Right. The differences in childhood are very differences than the issues in adolescence or early adulthood or later adulthood or even the elderly, period. So what you're saying is there's a, you're, kind of, raising the lifespan question, it seems like.

Dr. Wilson: Yeah. So yeah, looking across the lifespan and thinking also as we shift to understand more, what autism is and its, its role in this, you know, neurodiversity-affirming, kind of, protocol where we want to think about in the schools and out in the community. How can we be supportive of, of autistic individuals experiences?

Yeah. But also providing support to help them with areas that are challenging. So that's going to be a real shift. And I think that the autism research community is grappling with that at the moment and trying to figure out, you know, how do we make this shift and how do we honor the needs and strengths of autistic individuals while also providing the supports that they want and need?

Autism advocacy

President Ginsberg: And as you talk about that, we would be remiss if we didn't talk about too there's a big advocacy community for autism. What are some of the things that are being advocated for, particularly in this environment where, where funding is so, so, so challenged? It seems like the needs for this community are, are great. Yeah. And what are some of the areas that you see as, kind of, on the horizon?

Dr. Wilson: Yeah. Well, I think, you know, organizations like the Autism Self-Advocacy Network are really key in this. And thinking about bringing in the autistic voice more and more, to say, hey, this is my experience. And instead of, the non-autistic researchers guessing and and deciding what's needed, but to say this is what I experienced and this is how I think the field should move forward.

So those kinds of organizations that involve autistic self-advocates are really key in us moving forward in a thoughtful and ethical way to make sure that we're focusing on the areas that are of need to the autism community and families, and others, as opposed to deciding, well, this is what should happen, because this is what the neurotypical community values.

President Ginsberg: And another quote that I, I read the other day was that the world needs all kinds of minds and that people who maybe think differently or communicate differently or are just different are not less. But we need all kinds. Yeah. And yeah. In a, in a world where inclusion to me still has real value, understanding the importance of folks who think differently, who act differently, who maybe are different, but not less.

That's maybe a good place to, to, to end this, to say that, that what you're doing is so important. We're training the next generation of professionals in this field, the next generation of researchers in this field but also raising some of the most important questions in this field and providing some fundamentally important services to folks who are on the spectrum of autism, knowing that that spectrum is very wide.