Autism Goes To College
Autism Goes To College
EPISODE 49: It hits different on campus when autism is in the news
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This fall there's been a firehose of autism news -- stirring up old controversies, confusing parents and families, impacting students on the spectrum now at college, and even challenging autism researchers. In this special episode, host Katharine O'Brien talks with Dr. Katherine Meltzoff, professor of education at UCRiverside and director of the SEARCH Family Autism Resource Center about how teaching and learning about autism is being impacted and how students on the spectrum are faring. Big picture, one possible outcome could be a re-segmenting the autism spectrum.
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_06Having autism isn't something that should prevent people from having a successful college experience. It takes work.
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_03There were a lot of black children on the spectrum who were also deaf. She's not the first one.
SPEAKER_02I 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_07Especially in a college town like Don't DoorDash. Like, just go out and get the food. It's good exercise.
SPEAKER_08Hey 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_05Autism Goes to College began as a documentary film, following five college students on the spectrum as they navigated college life. At the end of this episode, I'll give you some details about where you can see the film today. And it's all at our website, autismgoes tocollege.org. Every month we drop a new episode. Here's what's also new: there's a resource center on our website with dozens of outtakes of important stuff that didn't quite make it into the film, all the podcast episodes, and blogs from experts and from student advisors from the film. Thanks for listening. We do hope to hear from you. Hello, I'm Catherine O'Brien, the host of the Autism Goes to College podcast. And on this episode, we're doing something just a little bit different. I spend my days on the campus of University of California Riverside, where I'm an autistic PhD student researching the spectrum. I teach uh students who are going to be educators, um, and some of whom are autistic themselves. And there's been a lot of questions and confusion on campus this summer and fall in ways that I did not imagine myself encountering when I started graduate school a couple of years ago. So to discuss some of that, I've invited on my advisor, Dr. Katherine Meltzoff, who is an associate professor of education and the director of the Search Family Autism Research Center, the clinic at which I work at UC Riverside, to have a conversation about what we're doing and what we can do to meet the moment and try to push forward the work of helping students with autism and families, even though things have gotten a little confusing. So, Katherine, Dr. Maltsoff, thank you so much for joining me. Yeah, thank you so much for inviting me. So let's start really broadly. We're both on campus and working in classrooms or uh in the clinic as well. And we're hearing how the information or maybe disinformation that's being put forward by the Department of Health and Human Services, the secretary Robert F. Kennedy Jr., resurfacing the dismissed link between vaccines and Tylenol and autism. It's impacting the questions and concerns that are being brought to us, uh, both about the potential causes of autism and the potential ways that autism could be supported or treated for a child. So, what does this mean for families and for us as people who are working in this space?
SPEAKER_04Yeah, that's a really good question. Um, I feel like there's just so much confusion right now. Everyone seems to be talking about autism in a way I haven't ever really heard before. There's a lot of distrust, mistrust about kind of what doctors have to say or what professionals have to say. And there's a lot of a lot of feelings being shared about why wasn't this told to us earlier? Why didn't we know these things? It's been kept secret from us. Like just a lot of, a lot of bad feelings about how things have been done in the past, and a lot of thoughts about how they should be done differently in the future. And it's been really hard to sort of cut through some of that noise, I think, and give people the right information.
SPEAKER_05And I think to me, I always assume some of this fear and worry is coming from the increase in autism diagnoses and the prevalence rise. And I kind of want to personalize that question a little bit. Um, just talking about the changing diagnostic criteria. Right now, like I qualify for a diagnosis of autism spectrum disorder, and it's accurate to say I'm autistic. But 20 years ago, the diagnostic criteria were such that I would have had a label of Asperger syndrome, a label that was um taken out of use when we made the jump to the most recent version of the diagnostic manual. And then 40 years ago, the diagnostic criteria were really, really narrow, and I probably wouldn't have had a diagnosis at all. Of course, I also wouldn't have existed. I'm not 40 yet, but you know, had had I had a time machine, you know? And so let's talk about that and so how that can create kind of confusion for the average person and for families.
SPEAKER_04Yeah, I'm really glad you brought that up, honestly, because I think that is one of the biggest drivers of this fear and this concern that parents have. Like, I have to do something, I have to do something. This is an epidemic, it's it's rising and rising. And I think there isn't enough attention paid to the fact that the, first of all, autism spectrum disorder or autism did not exist as a diagnostic thing until 1980. That is not a very long time ago. So before that, it was considered a subpiece of childhood schizophrenia, which we now know it is not at all. So, and the criteria in 1980 were incredibly strict. Like you had to have what they called gross deficits, quote unquote, in all these areas, in language, in you had to have bizarre quote unquote responses to people. Um, it had to be before 30 months of age. So a lot of people, and I think KOB, you rightfully identified yourself as one, a lot of people who today we think of as having autism spectrum disorder, being autistic, would not have gotten that diagnosis in 1980 because the criteria were so strict. It was capturing like a really tiny subset of what today we would consider kind of the most severe cases of autism, the kids that are the most affected, the most impacted, have the highest support needs. It was capturing those children, but missing the entire the entire rest of the spectrum.
SPEAKER_05Yeah. You know, in my class this summer, um, when I last taught, we hadn't um had some of the more recent news, but there was talk that the cause of autism was going to be published soon. Um, and I talked to my students about why I didn't think there was likely to be a single cause. And also I hypothesized at the time that I thought they might um re-explore the dismissed link between vaccines and autism. So I got a lot of questions from students about vaccines over the summer, both about how vaccines are made and how they work and how we know they're safe and effective and why we know they're not linked to cause autism. But I'm wondering if you're seeing that too and what kinds of questions you're getting about autism in your teaching practice now, um, if it's changed.
SPEAKER_04Yeah, I feel like there was 10 years or so, and maybe I've I've been at UCR 10 years. So I'm gonna just say the whole time I've been at UCR basically, I haven't had anybody ask me about vaccines and autism because it's been studied so many times since the first fraudulent study in 1998 that linked them in the first place. That was retracted, it wasn't accurate, and then it's been studied since then over and over, and there is no causal link whatsoever. And unfortunately, now we're kind of going back to wondering if there is a link because when people talk about autism recently, they also are talking about vaccines, and that is unfortunate because there just isn't a causal relationship there.
SPEAKER_05Yeah. The most recent studies that are well statistically controlled actually find that there is a slight inverse association where children that are fully vaccinated are a tiny bit less likely to be identified as autistic, which goes to show that statistics can easily be misinterpreted, but also that this really is a settled issue and that it had had kind of gone quiet for a while. So are there other things that have have sort of spun back up or are there new questions?
SPEAKER_04I feel like for a while, like I said, there was no talk of vaccines. But when there was talk of vaccines, maybe in like 2005, 2006, 7, when the retracted study was still more recent, it was only talking about the measles, mumps, rubella vaccine or the MMR. Now somehow we're talking about all the vaccines. Like I've heard a lot of talk that I've never heard before, questioning every vaccine. Um, the chickenpox vaccine, the HEP B vaccine that's recommended early in childbirth, like the day after birth. And it seems like it's coming in this strange circle where now we're re-litigating, so to speak, issues that have been settled, which again is concerning.
SPEAKER_05Yeah. Um, I I certainly was concerned when my students were not really sure what the mechanism of vaccines were or how they were discovered, although I was definitely happy to teach them about that. What are you finding that the students in your classes understand? Are they debating? Are they on all different points of view, or are they pretty accepting of what you're teaching?
SPEAKER_04It seems like they're pretty accepting. I think the bigger resistance or the bigger skepticism, I guess is a better way to say it, comes from families who are truly, truly convinced that their child was developing in a in a neurotypical way, and then they got their 12 or 18 month vaccines and everything changed. And and that is something that they feel is true, and it is essentially impossible to convince them otherwise. And the more people who feel that way, which is a valid feeling to have, but the more people feel that way and the more it gets discussed, the more it seems like something that's a likely cause, as opposed to, again, something correlated in time, like the emergence of first autism symptoms with vaccine age, as opposed to a causative relationship, which again, there just is not.
SPEAKER_05Yeah. And that is similar to the question of acetaminophen, where, you know, the child is experiencing a huge burst of development that makes them able to receive vaccines and also able to exhibit symptoms of autism. And unfortunately, those are happening at the same time. Um, I know I made a couple changes to my syllabus just in terms of covering uh vaccines more heavily and assigning uh an article that was newly published, uh, continuing to um explore the completely discredited link. Um, but have you made any changes to your syllabus or to your courses in response to what's going on?
SPEAKER_04I think I will be. When the next time I teach my undergraduate class, I think I'm going to be assigning that the that giant study, I think, out of Denmark where it's like two and a half million people.
SPEAKER_05Yeah, that's the one I assigned. It's it's every child born in the country for about 20 years. Um, and because they have a national health service, they have incredibly complete data. Um, so it's really compelling.
SPEAKER_04Yeah. And the data they present is quite complete. Um, it's really carefully done, it's statistically accurate, and it makes it pretty clear that there just isn't a link. And so I do think I'm I'm gonna be probably assigning that. Um, I also might talk about the review about acetametaphine and autism that was discussed by HHS a bunch recently, and that review was kind of touted as like proof that there was a link, but that's not what that review actually said, and that's not actually what the review found. So that's concerning, and I think it leads me to think that there needs to be a lot of discussions about how to interpret those scientific papers and how to interpret review papers and what review papers are and what they can and can't do and can and can't tell us. So I'm rethinking a lot of a lot of those things.
SPEAKER_05Yeah, absolutely. Is it changing any of the research side of things um in terms of grants we're working on? Or I haven't even thought about this yet, really, uh, for my own research, but I'm wondering if it if it puts some new directions on our work as researchers in terms of you know supporting media literacy for families or things of that nature.
SPEAKER_04Yeah, I mean, I definitely think it could it could change direction in terms of kind of public health outreach grants, like grants that are designed to provide education to families, um, to individuals who are supporting autistic people, to families who have questions and concerns, to self-advocates, any of those grants that are designed to be outreach and educational, I think including, like you said, media literacy, kind of scientific paper literacy to the extent that you can read the abstract of a paper and kind of understand what does and doesn't say.
SPEAKER_05Yeah, and even educating people that many scientific pup papers now publish a lay abstract, which I think a decade or two ago was was not the norm. But the changes that we've made as scientific communicators to try to make our work more accessible are not very meaningful if people don't know that those resources exist. Um so yeah, definitely have spent a lot of time in grad school working on plain language summaries of my work because I feel strongly that it should be accessible to the autistic community so that it is most useful.
SPEAKER_04Yeah. I mean, I think as scientists, if we don't do a good job of disseminating our work and of telling people what we're doing, what we found, what it means, why it's important, what the limitations are of the research that we do, I think that is something that ethically should be happening with every study. I think a lot of a lot of us as scientists like don't want to admit that our findings could be wrong.
SPEAKER_05Yeah.
SPEAKER_04But we should. Yes. Like just because one paper found one thing one time does not make it a pillar of scientific truth. Papers can be wrong, even if they were done ethically and correctly, findings can be wrong.
SPEAKER_05Yes, or uh a yes, a result can be explained by something that was not accounted for in the study. Um, you know, I remember very early on in my scientific career realizing that we had bred a mouse line as a as a model of a neurological condition, but we accidentally bred in a mutation that had completely confounded the result of our study, and it was useless. Um and that happens. Uh, and sometimes you don't catch it.
SPEAKER_04Yeah. And I think when also when papers try to do those things and make those controls and take those steps, that's something that should be emphasized a lot more to lay people. Like, for example, in the in the one of the big studies of acetamedaphine and autism, actually, they found an association, so a correlation between acetamedaphine use and autism. But then when they actually controlled for family factors and genetic factors, meaning, is there a sibling in this family with autism? And they looked at sibling pairs where the mom took acetamedophine in one pregnancy and not the other. Like they did these things to control for family factors. Once they did that, the association was gone. And I feel like that doesn't get enough attention. Like people look at the big headline and don't look at the analyses that come later that tend to be more careful and more deliberate.
SPEAKER_05Yeah, absolutely. And frankly, a lot of those statistical methods are very advanced. So um, people who even with an undergraduate level of education, it's hard to understand those analyses. And that's part of why, as scientists, it's really important, like you said, that we communicate. Um, you know, the publicity on autism can feel like a double-edged sword because it's taking a lot of energy to address fears and concerns that we didn't used to have to address and that maybe are not as linked to what we we know as academics. Like, you know, it's definitely affected uh my mental health to some degree. I've taken advantage of our on-campus short-term counseling service just to kind of vent about how it makes me feel sometimes. And, you know, if you're a student on campus, you probably have a similar resource. So if it's making you feel upset to hear these things, I encourage you to do the same. But I do think, and we've talked about the fact that there is kind of a silver lining here that autistic individuals and their families who are dealing with what is sometimes termed profound autism, although whether that is the right term, I think is still a subject of debate in the field, who really have 24-7 support and care needs and really have a lot of gravity to their challenges related to autism, are feeling sort of heard and witnessed in in this moment in a way that they haven't felt seen before. So what do you hope might come out of that?
SPEAKER_04I think that has a m been a massive silver lining, I will say. I feel like, especially with the increased awareness of neurodiversity in the last, let's say, decade or so, I feel like some parents have felt like the more, like paradoxically, the more acceptance there is for autism as a difference, not a disease, not a disability. I think some of those parents feel like the children that they have with these very profound support needs and 24-7 care needs, they feel like their children are sort of invisible because for them, in their lived experience, the challenges that their child has are disabling in their mind because it their safety issues, there's, you know, severe aggression, there's lack, complete lack of sleep, um it's really serious. And so I think the fact that those parents feel heard and the fact that there's more attention paid right now, anyway, to the community of what we're calling profound autism is really important because, in some ways, the DSM V, when we erased Asperger's and what was called pervasive developmental disorder not otherwise specified, or PDD NOS, by lumping everyone together in one spectrum, there was a sense that that sometimes the people who needed the most support were just getting forgotten.
SPEAKER_05Yeah. Um, because while the intention was to recruit limit confusion between different doctors diagnosing people with different things, you know, every single day I have a lot less disability related support needs than somebody who Is not able to speak, is not necessarily able to keep their body safe, is not necessarily able to feed or or have basic hygiene for themselves. And that is the reality for some autistic people. Um, and I think we need to talk about that. That said, it's relatively rare for people with those needs to attend college. So bringing it back to the topic of this podcast, how do you see all of the um all of the current publicity and public disinformation impacting a misunderstood population, which is autistic students on college campuses? Um, what what do you think might happen next?
SPEAKER_04Yeah, so I think this is the other side of the double-edged sword, right? So the families who feel seen finely, that's a silver lining. But the what you're talking about is the I think negative effect that's happening for autistic college students, autistic people in the workforce, autistic people who have families and have jobs and might be planning to have a baby, frankly. Yeah.
SPEAKER_05I worry about somebody who's thinking about planning a pregnancy in this moment and is autistic. Yeah.
SPEAKER_04And who feel who feel as though their lives are fulfilling and meaningful and don't want a cure, quote unquote, and don't want to feel marginalized and don't want, you know, people talking about them as though they have some horrible condition because they don't. I think that's that's the other thing we have to talk about, which is that for those people, it's invalidating, it's harmful, it's insulting, it's demeaning. I could go on, it's really bad.
SPEAKER_05Yeah. Those are those are all emotions and frustrations that I have worked through. Um, you know, wondering if if this is the dawn of uh new American eugenics against neurodivergent individuals, things of that nature. It's all heavy emotional weight. Um, and I think all of us know that college students perform best when they feel supported and accepted. Um, and this works against that for autistic college students, which is a real shame in my book.
SPEAKER_04Yeah. Yeah, I think it works against it. It also works against what the neurodiversity movement has worked so hard for over the last decade, which is to feel acceptance and support and validation and valued, which everyone should be. And so that's the problem with assuming that autism is something that has to be treated or is so, you know, terribly profound. I've heard language like it tears families apart. And that's really harmful as a statement because the spectrum is not one thing. We have to be aware of what it is.
SPEAKER_05Yeah, I think it can just as easily bring families together to support and understand each other. You know, certainly the better I understand myself, the more closeness I experience. And my my family listens to the podcast. Um, so yeah, I just I hope that um this is an opportunity for people to connect and and be empowered and kind of seek out the facts, even if they're a little harder to come by.
SPEAKER_04Yeah, that would be my hope. And to I think also just to recognize how wide and diverse the spectrum is. Maybe it's just a reminder for all of us that perhaps putting everyone into one label, although meant well and done for good reason, might still not be the right move. Like it might not, it might not be the right thing, and that autism is not one thing.
SPEAKER_05I I totally agree. And I think that there is interesting research that's starting to work on that. And, you know, although I am not directly involved in the American Psychological Association dividing, like deciding on the guidelines, I I kind of expect that they will resegment autism to some degree. Um, and yeah, I wonder if this move will kind of fuel that and give some more energy to trying to get it more correct this time.
SPEAKER_04Yeah, I definitely think there's a huge push, at least for segmenting what we were calling kind of profound autism into its own label, because again, of the amount of support needs, the amount of 24-7 care that is necessary for that subset of the population, small as it may be, it is very, there are a lot of needs. And so I think this might push the APA to change that labeling again.
SPEAKER_05Yeah, that's certainly one thing that I'm hoping may come of it, although it's too soon to know for sure what the impacts and outcomes will be. So tough stuff, but a lot of interesting potential as well. Thank you, Dr. Maltzov, for kind of cutting through some of the noise with me today.
SPEAKER_04Thank you. It's I think these conversations are just incredibly important because people don't know what to think and they're hearing different information from different sources. And it gets to a point where you get information fatigue and just feel like you don't want to hear anything anymore. So I think these are just necessary conversations to have and to publicize.
SPEAKER_05And now, as promised, here are ways to see the documentary. The 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.