Podcast 55 | transcript
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Hello and welcome to our podcast, Autism Goes to College. I’m your host, Katherine O’Brien, and on today’s
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episode, I’m joined by Dr. Barry Preszant, someone who spent the last five decades in the field of speech
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language pathology and whose work fundamentally shifted how we understand the autistic experience and
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communication. Throughout his career and through his research, Barry has challenged the status quo by proving
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that what was thought of as meaningless echoes are actually functional, meaningful communication attempts. He
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also approaches research on autism and neurodiversity, not from a pathology lens, but with a stance of empathy and
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inclusion. So, for this year’s uh autism acceptance month, we take a look at how
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far we’ve come and the work that still needs to be done on college campuses. Dr. Barry Preszant, welcome to the show.
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I’m so excited to have you. Thank you, Katherine. It’s a pleasure to be with you. So, just so our listeners
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have a little bit of information, can you walk me through that really
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impactful early finding about uh your research on those echoes that were
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thought about as meaningless aka echolleia and how it relates to communication and information processing
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like what you actually found. Uh yeah, I think um starting with my background a little bit might be
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helpful. um undergraduate was I was a psycho linguistics major. So my focus
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was on understanding the relationship between thought and language um and all
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the ways that we express language through speech and and and so forth. Um then went on for my degree in speech and
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language pathology. And um during my doctoral program in communication disorders, I got a job at Buffalo
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Children’s Hospital in a program for young autistic children. Um and it just
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so happened that all of those children repeated speech a great deal which is known as echolleia. Um and the two most
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uh acknowledged forms are immediate echolleia where a child repeats um in
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many cases very faithfully what had been said to him or her. Um and then delayed echoleia which is also known as
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scripting repeating something that had been heard in the past. Um and at the
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time um of course I was reading the lit literature being a doctoral student and also looking for a uh a thesis topic and
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I I was noticing at the time that much of the literature was referring to echoleia the great majority of it was
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referring to echolleia as meaningless pariting and psychotic speech and with
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my training that interpreted as well there’s no communicative intent behind
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it and there’s only one thing called echolleia. Um, you know, fast forward, I referred
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to that now these days as pathizing a behavior that people didn’t understand.
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Um, so I with the aid actually of a federal grant for my doctoral
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dissertation from the the old Bureau of Education for the handicapped, I was able to acquire um video equipment and
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all that I needed and I followed four children over a year, videotaped them at
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home, videotaped them at school, in group interactions, in one-to-one interactions. It was the early days of
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video analysis um of the behavior of young children and
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uh with my if you could say emerging expertise in analyzing communication, we
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looked at gestures, we looked at a child’s body language, we looked at of course their speech and we found that
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echoleia very often not only was produced with purpose and communicative
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intent but that served a variety of functions. Um, some of them were communicative functions and some of them
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are what we refer to as cognitive functions, such as a child rehearsing
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something he’s heard or she’s heard to be able to process it in greater depth.
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And since that time, we’ve also written about the emotional regulatory functions of echoleia where a child might say
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something like to themselves, don’t worry, it’s okay, everything’s okay. because somebody had said that to them
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when they were feeling anxious, upset, confused. Um and the study, our original
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study in various versions has been replicated. Um and um for me it was the
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beginning of many many efforts going forward to try to look at what young
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autistic and eventually all autistic and neurody divergent people do and how often unfortunately it’s been looked at
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through the lens of pathology rather than what purpose does it serve for this person.
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Absolutely. And based on all of that knowledge and expertise you have as one
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of the experts, what do you see as the biggest communication hurdles that autistic and neurode divergent students
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are facing in these academic spaces where they may have to be their own
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interlocutor or self- advocate uh with experts? Uh yeah, I think one of the
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biggest hurdles um it goes back to the people around them whether they be instructors or uh you know for
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individuals who live in a dorm maybe you know people who are responsible for their health and welfare in that
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situation. Um and I I would say this goes across the board and and that is the impact of of emotional regulation
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and challenges to emotional regulation. um that first of all it impacts so many
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it impacts academic performance learning in a lecture hall um it impacts the
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ability to communicate it impacts the ability to self- advocate and say to a
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college professor you know it’s more helpful maybe if I sit in a certain place in the classroom or is it okay if
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I review some things you know that are a little bit difficult for me to understand or even saying to a professor
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you know, you use a lot of non nonliteral language, you know, that sometimes that throws me off a little
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bit. Um, so I I think and and of course I always like to say what I’ve learned
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comes so much from my autistic and neurode divergent colleagues. Um so one
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of those colleagues Michael John Carly um he has actually said in these very
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words for him now in his life and and Michael’s um in his late 40s early 50s
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now he says emotional regulation is everything you know um and I believe that goes for
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you know I’m very involved in the non-speaking community now um and you know so many non-speakers or
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people who have minimal abilities to use speech for various reasons um are so
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often traumatized by the way they’ve been treated. Um so I I really feel a major issue in
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any setting for people on the spectrum um is for people other people to understand how important it is to
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support them and understand the challenges they face in staying well regulated emotionally and physiologically.
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Yeah. So, how can universities and institutions shift their culture to one
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that is less about um shaving off the uncomfortable edges of the autistic individual to sort of learning to listen
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to them and support their regulation and support um their full inclusion?
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Yeah, I think one of I think one of the things that’s that’s regulating um is
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having a sense that you’re part of a community. Um, one of the most stressful
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things for any human beings is feeling isolated. Nobody understands what I’m
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experiencing. Um, therefore, why even try, you know? Um, and uh I am involved
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uh at my current university placement at the University of Rhode Island in a program called the start program. Um, so
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let me just give that as an example um of of supporting students well in college. Um the start program is a
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program that uh provides community and support for incoming freshmen and their
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first year undergraduate. And uh each year it’s about 10 to 15 um autistic
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students who embrace their diagnosis and say they want to become part of this
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group. Um and uh the group also involves graduate students in communication
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disorders. Um and and it’s not for therapy or treatment. It’s to develop a
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social community to hang out together, to go hear music together outside of college. They meet together on a regular
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basis. As a matter of fact, um a week from tonight, I’ll be meeting with the start group. So it’ll be about 20 25
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students, half of whom are autistic. um and to I’ll talk about uniquely human
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because they read uniquely human and to talk about anything they all want to talk about. So I think that sense of
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open communication and community is is essential and I’m seeing it work now
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with the start program which has been going on before I became involved with it about five years. Um there’s a
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doctoral student who is studying the positive impacts on the journey, the college journey. Um I’ve spoken to
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students who are now juniors or seniors who say, “Oh my goodness, you know,
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getting that grounded start where I I feel there are people around me I could
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trust, people around me who have similar experiences and also to know where to
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literally put your feet on the ground in your first few weeks.” Yeah. of college. So the just quickly a quick
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example, the start program provides a tour of campus before all the other
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students come in so that they wouldn’t feel overwhelmed. It’s like this is familiar to me now. I
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know where these lecture halls are. I know where the dining rooms are. Um and we and we know how how important
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familiarity is for so many neurode divergent people. Yeah. I I am known for finding my
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classrooms before classes start on campus so that I’m less overwhelmed. I also had a really wonderful mentor my
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first year in my doctoral program who was able to help me navigate a bias incident when a professor was really
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quite cruel to me because of my autism. And ultimately, I don’t think I would have known what to do with that or that
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I should do anything with that if I hadn’t had the mentorship community. So I think it’s so valuable even beyond the
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undergrad experience. I appreciate you highlighting start at URI. Do you know
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any other campuses that are doing kind of great work in this space? Um yeah actually the uh there was a
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conference this past September at URRI and it’s part of a consortium of
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universities in the northeast. So it includes the University of New Hampshire include includes Northeastern University
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and the conference was on um issues in supporting neurode divergent people at
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the college level and in employment. Um so there actually were a number of
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presentations from the member and I could let you know I could send you an email let you know the me name of the
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group um from other member institutions who spoke about what they’re beginning
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to do and then there were a number of presentations from um corporations um
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which in some cases you know I think it may be of surprise to uh to some of your listeners that many
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corporations have been doing this for years before it’s happened on the college campuses. Yeah. Because they recognize the potential
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abilities of neurode divergent people in their workplaces. Um, so yeah, and I’m
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proud to say the presentations that were given by my colleagues at URI and that’s
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Vanessa Harwood and and Nina Shiatsi Tobin um who Nina is neurode divergent
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herself um and she I think her title is assistant director of equity and
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inclusion on campus. um they gave a wonderful presentation and the start program seems to be quite progressive
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compared to um some of the other presentations and let me say why that’s the case. They really focus a lot on
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relationships. I mean it’s not simply the tangible supports like I’ll I’ll help you you
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know decide you know what requirements you need to meet in what order or even
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getting to know campus but they speak a lot about we are the people you can come
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to when you are stressed when you’re having difficulty and of course most
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campuses do have counseling services but unless those counselors can look through the lens of neurode divergent experience
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that may not be that helpful. Yeah. I mean, having at least one place
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of relational safety is so crucial. Um, I I’m a huge proponent of relational
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approaches. You know, one of the projects that I’m on, smooth sailing, is about forming strong relationships in K
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through two for autistic children and and their teachers. Then um in terms of
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my doctoral research, I’m about you know deeply understanding in a short time the
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people you’re assessing so that we’re less biased against women, people of color and multiply marginalized
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autistics who’ve been overlooked until college. So I think the relational approach is absolutely crucial. Um, and
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I just wonder being in the neurodiversity space this long, how has
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that influenced your thinking about the meaning of success and how we measure success in higher ed and school?
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Yeah, that that’s a great question and and I think um you know I’ve always being a student of child and human
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development and understanding that as we all understand that every brain is
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different. We process life differently. I I I think we have to become much more
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attuned to individualizing what we see success as. you know what what’s going
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to lead to both a better quality of life and an engaged quality of life to the
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extent that a person wishes to be engaged in certain ways um as well as um
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you know kind of the the academic piece and how those how those come together.
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So you’re probably familiar with um what a dear friend of mine actually for a few
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decades now Dr. Steven Shaw Yes. um what what Stephen says and and
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has worked on for many a number of years and that’s the matching process. Um you know how can we help neurode
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divergent people to not only understand their talents and their and their strengths or potential strengths but how
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can we help them you know everything from choosing the right college or
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university to go to to then specialize in what they’re doing. um and where it
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really will not only provide the motivation but is a good match for their
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for their brains and their neurology. I mean that that’s that’s so important. I think that goes for everybody to some
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extent but I think especially because neurody divergent and autistic people are so misunderstood. It’s especially
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crucial. Yeah. I think we’re peculiarly sensitive to a mismatch to just in terms of
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dysregulation and becoming traumatized in certain regards.
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Yeah. Yeah. I I was going to say when when you mentioned traumatized um you know I I want to bring up a situation
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that was uh a traumatic situation to a person but also is a very sad story. Um,
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I was asked um about a year ago um to speak to a number of faculty at a
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university in Louisiana um because uh a young autistic person uh
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died by suicide, took his life. Oh, okay. Um, and it happened uh because
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of a misunderstanding that he had where it ended up that his instructor during a
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testing session thought he was cheating and then asked him to leave the class
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and said, you know, I’ll see you next year, meaning that you failed the class, you’re going to take it over again.
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And and u it was an absolutely traumatic experience. Now kudos to the university and that they immediately saw the need
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for somebody to speak to the faculty. They did a reading of uniquely human. I asked uh an autistic colleague of mine
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who was a suicideologist, a special specialist um in causes and prevention
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of suicide to join me and we gave a talk. Um, and so I I think
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it I mean you obviously do not want to focus on terrible terribly bad news, but
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I don’t think people think enough about the consequences of not understanding how a neurode
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divergent or autistic person might respond. Um, and you know, I’m not going to reiterate all of the research and
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data that’s out there about, you know, the traumatic experiences that so many people face,
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but I think we have to wake people up and and say, “No, it’s not just nice to
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put in these accommodations and supports and developing trusting relationships
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because we feel it’s good to do that for people maybe who are more vulnerable.” There could be extremely extremely
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negative consequences if we don’t. Yeah. Um, one thing that, uh, I’ve cited
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in my dissertation review, um, is that if autistic suicidality were properly
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addressed according to a global disease burden review by Centaro at all, this is
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the doctoral student in me, overall suicide disease burden mortality, so death by suicide would be reduced by 2%
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globally, which is a big percentage given how small the autistic community
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is um you know and so
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autistic college students are at increased risk of the worst outcomes not to not to dwell in the bad. Um, so when
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you perhaps when you’re working with college faculty or communities, um, how do you explain autistic
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communication and kind of break it down for people that are not used to listening, uh, to autistic people and
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understanding what we might be saying? Yeah. And I think, you know, some of this information is is fairly wellnown.
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Um I had alluded to one previously when I said that you know understand that for
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many autistic people not saying all but for many autistic people nonliteral language especially use of sarcasm and
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cynicism um can be confused um could be very very confusing um even though uh I don’t know
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if you watch the pit but Dr. Dr. Mel King, the autistic doctor, second year
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resident, master of sarcasm, but I don’t think her sister Becca
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and and I love it because they show how she’s learning. She that people will say something that’s nonliteral and she now
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that’s a joke, right? Okay, I think I’m getting that now. But there’s the process of that. But I I think that’s
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certainly the case. I think um on kind of the way an autistic student might
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express themselves. Um I think it’s important for faculty to understand that sometimes you’re getting information a
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little bit more directly uh or you’re getting opinions. Um, you know, and that’s it gets back to the pathizing,
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you know, is it rude or is it honesty? you know, it’s like um and and uh ju just understand and I’m
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very interested and have been especially with my linguistics background in how
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culture affects communication and the fact that and you know something that
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you know Katherine that there’s a lot of discussions now about communication patterns um in autism very often are a
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reflection of an autistic culture um and it’s not the that it is just uh or should not be
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looked at through what I refer to as a deficit checklist. Oh, this person isn’t polite enough or this person is too
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direct or this person doesn’t adjust their communication according to neurotypical standards. Yeah, I’m I’m
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using grounded theory coding for interviews with other autistic adults to try to understand some of the uh aspects
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of autistic community that they experience in relationship with each other. Um that’s like the other part of
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my dissertation besides making the a little bit less
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adosy. Yeah. Yeah. Yeah. Yeah. And in terms of
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parents of either college students or younger children who might be aspiring
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to go to college one day, you know, how do they talk to their child about
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advocating for their self? And also, how do they understand and respect, you know, their child’s unique
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communication? Yeah. Um well, you know, uh let let me just uh defer to somebody with some
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expertise in this area. Um I think as you may know, um I’ve been doing a
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podcast, um with Dave Finch, who is autistic adult,
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uh and it’s called Uniquely Human, and we had uh we had many guests actually
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that spoke on issues that have already come up on our discussion right here. Um one one is Eric Enley. Um, oh, personal
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friend of mine, too. Supporter of smooth sailing. Yes, there you go. So, you can explain, you
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could explain what he does to help out families and to help out neurode divergent students. Top college consulting. He has a
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business that is totally geared to matching the neurode divergent student to the right school for them. Um,
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because it’s not just about the rankings. That’s right. It’s about the match. But yeah, I listen
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listen to uniquely human regularly. Yeah. And and so I think we do have to
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understand um with this awakening of knowledge of understanding the neurode
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divergent experience um people don’t have to feel they have to re reinvent the wheel. Um, so I was going to give a
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plug to two of my colleagues, to Vanessa and Nenah, because we interviewed them about the University of Rhode Island
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Start program, and that’s one of our podcasts. Um, and I’ve had two interviews now, um,
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with Lisa Morgan, who was an autistic suicideologist about prevention and and also about
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grief and loss. So, um, it’s very very important to understand there there’s
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this expertise that’s developing that we can go to now and not feel like, oh,
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there’s nothing out there because there’s a lot of good information, a lot of good people out there. Yeah. And autistic adults can mentor
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your autistic teen or college student. Um, I think in general we are as an
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autistic community strongly motivated to reduce the suffering of our youth. um
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and and try to prevent some of the things that we’ve personally gone through from being perpetuated.
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Yeah, absolutely. And not not just mentoring autistic teens or individuals thinking
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of going to college, but mentoring neurotypical people. I mean that’s been
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I I’ve learned more from autistic and neurode divergent colleagues and friends
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and even children you know throughout my whole career but especially the last 10 to 15 years and and and my podcast now
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you know 150 episodes more than half probably twothirds neurode divergent guests um it’s my greatest learning I
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feel so fortunate and this book I’m working on the reason I was a little bit late coming in
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is is the our interviews on the podcast are are just a treasure trove of wisdom
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and that’s going to find its way into this book. Yeah, I have been connected to so many interesting scholars through listening
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to the podcast. I will say your Lisa Morgan episodes were particularly impactful for me personally. Um, so
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thank you for that. Um, yeah. And I will say when I mentor non-aututistic people
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to make them better with autistics, I’m much more likely to want to be paid. I I
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will happily volunteer my time for autistic community till the cows come
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home. But, um, teaching teaching neurotypical individuals how to be
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competent with autistics is my job. Oh, absolutely. And and I’m kind of
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proud to say that um you know for many many years we uh did a symposium uh to
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raise money for our parent retreat weekend which is now coming into its 28th year. Um and and that has been an
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important place for parents not only of young kids but the full age range to
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kind of feel a sense of community and to be exposed to the more progressive neurodeiversity
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perspective of of what’s going on. But we um going back to the 1990s,
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we started having autistic presenters and speakers who we paid
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incredibly progressive for that era in particular. Oh yeah. Yeah. Yeah. For men. And then every year and now at our parent
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retreat, we always have autistic people come and very often parents of very
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young kids who are new to we call new to it all for the first time. They have a chance to spend some time with an
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autistic person talking about their life, what’s been helpful, what’s not been helpful. And we pay them to come to
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our parent retreat. So it’s absolutely essential when when we’re asking people to share their expertise, they need to
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be respected and compensated for sharing their expertise. Yeah. And we’re amidst autism something
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month, awareness, acceptance, perhaps global autism month. Um, what would you
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say to college students who might be struggling, might be feeling the burden
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of of this year, this academic year’s news cycle,
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which has been really kind of challenging as autistic people and, you know, kind of I think a message of hope
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maybe about communication and um, being out there.
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Yeah, I I would say I know it’s not a lot easier said than done, but I would
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say um community, community, community. Seek out community. Seek out people um student colleagues of
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yours. Seek out faculty who may or may not be neurode divergent as allies. Um I
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I I say that to parents of young kids, even in elementary school, that if they’re feeling I’m hitting a wall, they
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just don’t understand my kid. they, you know, they’re disrespectful to me. Look for that one faculty member,
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you know, uh maybe it’s the gym teacher, maybe it’s the music teacher, but seek
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out your allies because then get it who exactly who get it. Um and
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and when that happens, you feel validated. You don’t feel isolated. And
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then sometimes other people hear about what’s going on and say, I want to join you. you know, I mean, it might be other
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faculty members who have neurode divergent family members, children, you
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know, it’s just so important to seek out community and um I think probably the
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one of the most welcoming communities is neurode divergent and autistic people.
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We actually the second edition of my book uniquely human end actually ends with comments from my friend Dina
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Gastner um who is a PhD uh psych not psychologist she is a
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social worker um and she she ends our book by saying we are here for you please contact us
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please join us you know and and you know the old adage that there’s power in numbers that’s when changes happen Yeah.
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Um, yes. And we’ve had on this podcast
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college professors who are neurode divergent or who are doing the work to
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educate in the neurodiversity space. Um, you know, uh, Sa Sasha Zeta and Yasmin
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Bulleran created neuro prep and that we talked to some folks at CSU Fullerton
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who have taken it. So definitely check out the ample back cataloges of both
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Uniquely Human, the podcast and Autism Goes to College for resources on these
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matters. Yes, Dr. Barry Preszant, I’m so excited to hear that you have another book coming.
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And again, thank you so much for coming on our podcast and for having this conversation with me. It’s been so
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illuminating. Katherine, it’s been an absolute pleasure. Um and again a learning
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experience for me when I hear from you with your expertise of you know what are
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the questions you feel that would be useful for your audience to uh hear us address. So thank you