Autism Goes To College
Autism Goes To College
EP 55: Autism Goes to College x Uniquely Human with Dr. Barry Prizant
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
For Autism Awareness and Acceptance Month, Autism Goes to College host Katharine O’Brien sits down with Dr. Barry Prizant, pioneering autism researcher, advocate, author, and host of the Uniquely Human podcast. Named after his bestselling book, Uniquely Human, the podcast reflects Dr. Prizant’s long-standing impact on the autism community. For Katharine, this is a dream conversation with one of the people who has deeply shaped her life and work. In this episode, they explore how autism research and advocacy have evolved, what Dr. Prizant sees for autistic students on college campuses today compared to when he began his career, and a preview of his next book, due out later this year. Dr. Prizant is the author of five previous books and is widely recognized as one of the world’s leading experts on autism.
Do not take classes because you think you should take the classes. Economics and computer science. I took because I thought that it could help me in the professional world. And if it gives you an existential crisis about your identity as a scholar, and then that bleeds through to your other courses, including the ones you're actually passionate about, just drop it. Do not feel ashamed for dropping a class.
SPEAKER_00Join clubs, find groups, find your people, find ways to fit in, see a peer mentor, see somebody who can help you get involved on campus.
SPEAKER_07There were a lot of black children on the spectrum who were also deaf. She's not the first one.
SPEAKER_06I researched all of the majors and I eliminated the ones that sounded not interesting to me. So then I changed it to chemical engineering to work with chemistry. Then I took an environmental science class and I'm like, I think environmental issues are really important, and I'm really passionate about state sustainability and stuff. So then I changed it to finally environmental engineering.
SPEAKER_05Especially in a college town like Don't DoorDash. Like, just go out and get the food. It's good exercise.
SPEAKER_04Hey everyone! Thanks for joining us on this episode of Autism Goes to College, the podcast for students on the spectrum and for everyone who supports us. Navigating college is always a challenge, so here are the hacks, insights, and great ideas you've been looking for to make college work for you. We're a small group of self-advocates. We're all in college or recently graduated, and you can do this too.
SPEAKER_08Hello, and welcome to our podcast, Autism Goes to College. I'm your host, Catherine O'Brien, and on today's episode, I'm joined by Dr. Barry Prazant, someone who spent the last five decades in the field of speech language pathology and whose work fundamentally shifted how we understand the autistic experience and communication. Throughout his career and through his research, Barry has challenged the status quo by proving that what was thought of as meaningless echoes are actually functional, meaningful communication attempts. He also approaches research on autism and neurodiversity, not from a pathology lens, but with a stance of empathy and inclusion. So for this year's Autism Acceptance Month, we take a look at how far we've come and the work that still needs to be done on college campuses. Dr. Barry Presant, welcome to the show. I'm so excited to have you.
SPEAKER_02Thank you, Catherine. It's a pleasure to be with you.
SPEAKER_08So just so our listeners have a little bit of information, can you walk me through that really impactful early finding about uh your research on those echoes that were thought about as meaningless, aka echolilia, and how it relates to communication and information processing, like what you actually found?
SPEAKER_02Yeah, I think starting with my background a little bit might be helpful. Um, undergraduate of I was a psycholinguistics major. So my focus was on understanding the relationship between thought and language and all the ways that we express language through speech and so forth. Um, then went on for my degree in speech and language pathology. And um, during my doctoral program in communication disorders, I got a job at Buffalo Children's Hospital in a program for young autistic children. Um, and it just so happened that all of those children repeated speech a great deal, which is known as ecolalia. Um, and the two most uh acknowledged forms are immediate ecolalia, where a child repeats um, in many cases very faithfully what had been said to him or her. Um, and then delayed ecolalia, which is also known as scripting, repeating something that had been heard in the past. Um, and at the time, um, of course, I was reading the lit literature, being a doctoral student and also looking for a uh a thesis topic. And I was noticing at the time that much of the literature was referring to echolalia, the great majority of it was referring to ecolalia as meaningless parroting and psychotic speech. And with my training, that interpreted as, well, there's no communicative intent behind it, and there's only one thing called echolalia. Um, you know, fast forward, I referred to that now these days as pathologizing a behavior that people didn't understand. Um, so I, with the aid actually, of a federal grant for my doctoral dissertation from the old Bureau of Education for the Handicapped, I was able to acquire um video equipment and all that I needed. And I followed four children over a year, videotaped them at home, videotaped them at school, in group interactions, in one-to-one interactions. It was the early days of video analysis of the behavior of young children. And uh with my, if you say, emerging expertise in analyzing communication, we looked at gestures, we looked at a child's body language, we looked at, of course, their speech, and we found that echolia very often not only was produced with purpose and communicative intent, but that served a variety of functions. Um, some of them were communicative functions, and some of them are what we refer to as cognitive functions, such as a child rehearsing something he's heard or she's heard to be able to process it in greater depth. And since that time, we've also written about the emotional regulatory functions of Echolelia, where a child might say something like to themselves, don't worry, it's okay, everything's okay, because somebody had said that to them when they were feeling anxious, upset, confused. And the study, our original study in various versions has been replicated. And for me, it was the beginning of many, many efforts going forward to try to look at what young, autistic, and eventually all autistic and neurodivergent people do, and how often, unfortunately, it's been looked at through the lens of pathology rather than what purpose does it serve for this person.
SPEAKER_08Yeah. And based on all of that knowledge and expertise you have as one of the experts, what do you see as the biggest communication hurdles that autistic and neurodivergent students are facing in these academic spaces where they may have to be their own interlocutor or self-advocate with experts?
SPEAKER_02First of all, it impacts academic performance, learning in a lecture hall. Um, it impacts the ability to communicate, it impacts the ability to self-advocate and say to a college professor, you know, it's more helpful maybe if I sit in a certain place in the classroom, or is it okay if I review some things, you know, that are a little bit difficult for me to understand, or even saying to a professor, you know, you use a lot of non-literal language, you know, sometimes that throws me off a little bit. And of course, I always like to say what I've learned comes so much from my autistic and neurodivergent colleagues. So one of those colleagues, Michael John Carley, he has actually said in these very words, for him now in his life and Michael's late 40s, early 50s now, he says, emotional regulation is everything. Um, and I believe that goes for, you know, I'm very involved in the non-speaking community now. And so many non-speakers are so often traumatized by the way they've been treated. Um, so I I really feel a major issue in any setting for people on the spectrum is for people other people to understand how important it is to support them and understand the challenges they face in staying well regulated emotionally and physiologically.
SPEAKER_08So, how can universities and institutions shift their culture to one that is less about um shaving off the uncomfortable edges of the autistic individual to sort of learning to listen to them and support their regulation and support um their full inclusion?
SPEAKER_02I think one of the things that's that's regulating is having a sense that you're part of a community. One of the most stressful things for any human beings is feeling isolated. And I am involved at my current university placement at the University of Rhode Island in a program called the START Program. Um, the START program is a program that provides community and support for incoming freshmen. And uh the group also involves graduate students in communication disorders. And it's not for therapy or treatment, it's to develop a social community, to hang out together, to go hear music together outside of college. They meet together on a regular basis, as a matter of fact. And also the START program provides a tour of campus before all the other students come in so that I wouldn't feel overwhelmed. It's like this is familiar to me now. I know where these lecture halls are, I know where the dining rooms are. Um, and we and we know how how important familiarity is for so many neurodivergent people.
SPEAKER_08Yeah. I appreciate you highlighting start at URI. And I just wonder being in the neurodiversity space this long, how has that influenced your thinking about the meaning of success and how we measure success in higher ed and school?
SPEAKER_02You know, I've always been a student of child and human development and understanding that as we all understand, that every brain is different, we process life differently. So you're probably familiar with a dear friend of mine, actually for a few decades now, Dr. Stephen Shore.
SPEAKER_08Yes.
SPEAKER_02What Stephen says and has worked on for many a number of years, and that's the matching process. Um, you know, how can we help neurodivergent people to not only understand their talents and their and their strengths or potential strengths, but how can we help them, you know, everything from choosing the right college or university to go to to then specialize in what they're doing, um, and where it really will not only provide the motivation, but is a good match for their brains and their neurology. I mean, that that's that's so important. I think that goes for everybody to some extent, but I think especially because neurodivergent and autistic people are so misunderstood, it's especially crucial.
SPEAKER_08Yeah, I think we're peculiarly sensitive to a mismatch too, just in terms of dysregulation and becoming traumatized in certain regards.
SPEAKER_02Yeah, I was gonna say when when you mentioned traumatized, um, I was asked about a year ago to speak to a number of faculty at a university in Louisiana because a young autistic person died by suicide, took his life. Um, and it happened because of a misunderstanding that he had, where it ended up that his instructor during a testing session thought he was cheating and then asked him to leave the class and said, you know, I'll see you next year, meaning that you fail the class, you're gonna take it over again. And um, it was an absolutely traumatic experience. Now, kudos to the university in that they immediately saw the need for somebody to speak to the faculty. They did a reading of Uniquely Human. I asked uh an autistic colleague of mine who is a suicidologist, a special specialist in causes and prevention of suicide to join me, and we gave a talk. But I don't think people think enough about the consequences of not understanding how a neurodivergent or autistic person might respond. But I think we have to wake people up and say, no, it's not just nice to put in these accommodations and supports and developing trusting relationships because we feel it's good to do that for people maybe who are more vulnerable. There could be extremely, extremely negative consequences if we don't.
SPEAKER_08Yeah. One thing that I've cited in my dissertation review um is that if autistic suicidality were properly addressed according to a global disease burden review by Santomoro et al. This is the doctoral student in me, overall suicide disease burden mortality, so death by suicide would be reduced by 2% globally, which is a big percentage given how small the autistic community is. So autistic college students are at increased risk of the worst outcomes, not to not to dwell in the bad. So perhaps when you're working with college faculty or communities, how do you explain autistic communication and kind of break it down for people that are not used to listening uh to autistic people and understanding what we might be saying?
SPEAKER_02Yeah, I think for many autistic people, not saying all, but for many autistic people, non-literal language, especially use of sarcasm and cynicism, could be very, very confusing, even though uh I don't know if you watch The Pit, but Dr. Mel King, the autistic doctor, second year resonance.
SPEAKER_08Mel is a master of sarcasm, but I don't think her sister Becca would be.
SPEAKER_02And I love it because they show how she's learning. She that people will say something that's non-literal and she goes, now 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 certainly the case. I think um on kind of the way an autistic student might express themselves, um, I think it's important for faculty to understand that sometimes you're getting information a little bit more directly, uh, or you're getting opinions. Um, you know, and that's it gets back to the pathologizing, you know, is it rude or is it honesty? You know, it's like, um, and and uh just understand, and uh I'm very interested and have been, especially with my linguistics background in how culture affects communication and the fact that, and you know, something that you know, Catherine, that there's a lot of discussions now about communication patterns um in autism very often are a reflection of an autistic culture. Um, and it's not the case that it is just uh or should not be looked at through what I refer to as a deficit checklist. Oh, this person isn't polite enough, or this person is too direct, or this person doesn't adjust their communication according to neurotypical standards.
SPEAKER_08Yeah. And we're amidst autism awareness, acceptance, perhaps global autism month. Um, what would you say to college students who might be struggling, might be feeling the burden of this academic year's news cycle, which has been really kind of challenging as autistic people? And, you know, kind of I think a message of hope maybe about communication and being out there.
SPEAKER_02Yeah, I I would say, I know it's not a lot easier said than done, but I would say um community, community, community, seek out community, seek out people, um, student colleagues of yours, seek out faculty who may or may not be neurodivergent as allies. Um, I I say that to parents of young kids, even in elementary school, that if they're feeling I'm hitting a wall, they just don't understand my kids, they you know, they're disrespectful to me. Look for that one faculty member. You know, uh, maybe it's the gym teacher, maybe it's the music teacher, but seek out your allies who exactly who get it. Um, and and then when that happens, you feel validated, you don't feel isolated, and 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 faculty members who have neurodivergent family members, children, you know. It's just so important to seek out community. And um, I think probably the one of the most welcoming communities is neurodivergent and autistic people. We actually, the second edition of my book, Uniquely Human, and actually ends with comments from my friend Dina Gassner, um, who is a PhD social worker. Um, and she she ends our book by saying, we are here for you. Please contact us, please join us, you know, and and you know, the old adage that there's power in numbers, that's when changes happen.
SPEAKER_08Yeah. And we've had on this podcast college professors who are neurodivergent or who are doing the work to educate in the neurodiversity space. Um, you know, Sasha Ziedik and Yaseman Balorian created neuroprep. And that we talked to some folks at CSU Fullerton who have taken it. So definitely check out the ample back catalogs of both Uniquely Human the Podcast and Autism Goes to College for resources on these matters. Dr. Barry Presant, I'm so excited to hear that you have another book coming. And again, thank you so much for coming on our podcast and for having this conversation with me. It's been so illuminating.
SPEAKER_02Catherine, it's been an absolute pleasure. So thank you.
SPEAKER_08The documentary film Autism Goes to College is currently available through many channels, but the easiest way to see it today is to rent it on Vimeo On Demand, which you can access from your Apple TV or most smart TVs by going on the Vimeo On Demand app. You can also find a direct link on our website at www.autismgoes to college.org. The film is also available for educational use and live and hybrid screening events. All the relevant info and links can be found on our website. Thank you so much for listening, following us on Instagram, Facebook, and TikTok, and especially for adding your reviews on Apple Podcasts. Our show is specifically for students on the spectrum navigating college, and we really appreciate your support for Autism Goes to College. Thanks for listening!