Episode 14: Adrienne Miao & Michael Shor

In this episode of our podcast, CDCI Community Services Coordinator Adrienne Miao connects with Michael Shor. Shor is an autistic psychologist, an advocate for people with autism, and a member of the CDCI Community Advisory Council.

A full transcript of the episode appears below.

Adrienne Miao: Hi everyone! Welcome to the CDCI podcast. My name is Adrienne Miao. I’m one of the CDCI core function coordinators. I’m the community services coordinator and I work as an OT [occupational therapy] consultant on several of the projects with the I-Team, the Continence Project and [Pediatric Professionals of Vermont]. And I’m very excited to be joined today by Michael Shor.

Michael, do you mind introducing yourself?

Michael Shor: Not at all. In terms of the the Center on Disability and Community Inclusion at UVM, I’m on the Community Advisory Council, which is basically a place where people with different relationships and perspectives, around disability can participate in shaping what the organization does. Otherwise, apart from that, I’m a person on the autism spectrum with a number of various neurodevelopmental diagnoses, like ADHD and various sort of, subtler differences with motor function and things like that.

Professionally, my sort of main job is I’m a psychotherapist.

I work out of a practice called St. Johnsbury Psychology Associates, with people across the state. And aside from that, I’ve also been working with the UVM Autism Collaborative and doing a certain amount has consulting and facilitation with some community-based research projects related to the autism spectrum. So that’s professionally.

Did your question cover other areas too?

Adrienne: If you’d like to share anything about your personal interests or what you’re engaged with this winter, that would be fine too.

Michael: Yeah. Yeah, that’s cool. So personal interests: I am really actually quite interested in a lot of things. I’m a — I call it scientifically-minded person? But really I’m interested really in the whole science, technology, arts and sort of spectrum. And do things actively in all those all those areas.

One of my big interests is neurodevelopmental differences. And as someone who was started to be diagnosed with neurodevelopmental differences, maybe… I guess it would be going on about 30 years or so ago. Maybe that would put me at 10, or something and probably even a little earlier than that.

And trying to understand things about it always sort of piqued my interest. Dealing with living in a not always very neurodiversity-friendly world, also had lots of challenges and also interesting sides to it as well.

And so, I ended up using my strengths to kind of both deal with those kinds of things and also to sort out how to do the things I am good at without a lot of interference from external and internal issues. So that got me driven to really understand the science, the social issues around these kinds of things.

By social I both mean societal, and I also mean like interpersonal. So since then I studied psychology and then got a master’s degree in social work. I am a practicing therapist working towards independent clinical licensure.

And then after I started doing that at some point I wanted to take the opportunity to get back into research. So I ended up jumping on an opportunity at University in Vermont back around 2017 with a new doctoral program that was there, and really looked at getting more involved with autism research, which is something that I had always wanted to do.

So that’s the sort of my quick “long intro”. *laughs*

Adrienne: Thank you so much. And we’re going to dive more a little bit into your both your career interests and your research interests, but I’m wondering just for anyone that may not be as familiar, could you just describe what you mean when you say “neurodevelopmental differences”?

Michael: Yeah. So that’s a complex question worthy of an answer.

By “neurodevelopmental differences”, I mean — well, okay so on the most basic level, I mean I have a diagnosis of autism spectrum disorder, for example. (Or we’re generally kind of going more towards calling ourselves “autistic people” at this point.) And attention, the attention issues and things like that.

So but what they really are is variations.

On the basic level, there are variations on how the brain is structured and functions for a variety of biological reasons.

And so some types of variations happen, like after you’re born, sometimes they’ll start appearing when you’re an adult. So for example like, the core symptoms of schizophrenia, for example, are an adult-onset mental health condition. With neurodevelopmental disorders generally, there’s really some aspect of them that exist when you’re born.

And over time, you don’t necessarily see all the differences immediately unless you look very carefully or some of them just don’t really show up until you sort of, go into situations where you use those parts of your mind or that kind of thing. So that’s why they’re considered developmental.

And some neurodevelopmental differences you can measure the day someone’s born if you do it carefully enough and some take time to kind of see.

And the other aspect of the neurodevelopmental differences… So when I was first diagnosed, autism was existed in a category called “pervasive developmental disorders”. And in some way I kind of like that term in the sense that because it’s not like, you know, you grew up and you had a stroke in one part of your brain and it just sort of stopped doing what it was doing.

It’s more like that most of these things affect function across a lot of different areas of processing and stuff. And so the symptoms we use to make the diagnoses or the features to make these diagnoses are just limited part of of what the actual experiences and maybe even loosely tied to the underlying biology of it.

Adrienne: Thank you. You took a really complicated question and gave a really clear answer.

Michael: *laughs*

Adrienne: And I appreciate that, Michael. You mentioned you received your diagnosis when you were maybe around 10 years old? And I’m just curious: did you grow up in Vermont?

Michael: I grew up in West Virginia. Are you curious about the diagnosis, like what the history of that is?

Adrienne: Only if you feel inclined. Yeah.

Michael: No, no, I think it’s interesting. I mean, I think it’s interesting. I think just from a societal view of the fact that, you know, I was born in a time that stuff was just evolving. When a new set of diagnostic criteria came out pretty shortly around when I was diagnosed with it, that made it more easier to get one of these diagnoses? On paper?

And I grew up in a small private school, and I started having learning issues where the way that I was taught different things just wasn’t working very well. And that’s really what spurred getting a evaluation done. And we ended up driving like two and a half hours to U.V., the University of Virginia to get a sort of multi-day assessment kind of done.

And that’s where they said, you know — they, you know, gave me sort of various kind of learning disability kind of oriented diagnoses?

And then they sort of said, “And it seems like there may also be–” they just called it “pervasive developmental disorder”, which isn’t actually a diagnosis; there’s pervasive developmental disorder not at the right specified, but they didn’t really say that. They were just sort of putting me in that third general category.

And then also: “And we think you might have ADHD, too.” So those are the bigger ones that I tend to talk about, but like really, I was also diagnosed with like dysgraphia, meaning difficulty in like handwriting, and working with that. I wasn’t diagnosed with dyslexia, but I really have dyslexia too. I was kind of kind of fine motor coordination issues and that kind of thing.

So I had this sort of whole host of things that came up at once in that process, and that’s what got me there. And eventually I got an Asperger syndrome diagnosis. And then as an adult when they switched that over to ASP, we you know, switched that over. But.

Adrienne: I’m curious when you think back now, what it was like for you to receive all those diagnoses, that information: was it helpful to you? Did you feel like it made a difference for your education?

Michael: So yes. But how it was, I think the diagnosis was mostly helpful, but I think in some ways it wasn’t done as well as it could be. And then I also– so like with the learning stuff, which is what  my family originally had taken me there for, we tried to kind of quickly make changes in my schooling situation with that.

So through the public school system, we got what they call additional services kind of stuff, which was like some occupational therapy and speech therapy. And the reality was some of that was fairly useful and some of it was fairly mixed. Didn’t got really great academic accommodations in a lot of ways with the stuff and never really did, honestly? And so since that was part of the purpose of it, I think there’s really not nearly enough either research or intention — at least at the actual like, educational level to really use that information well.

I think even today it’s extremely backwards, the lack of real systematic modification. And obviously, like, you at a college level, you see almost nothing other than sort of like time accommodation being done for like, learning differences. And really that’s mostly what the sort of K-12 places I did was willing to do at most and that’s really not enough. It’s not an appropriate approach to solving some of these things.

So it was mixed.

The autism spectrum thing, we just didn’t really know that much what to make of it, honestly, I think at the time. And until I was like 16 and like actually saw some documentaries on this thing, and was like, “Wait, yeah. That really is me, and that starts to explain some stuff” it just didn’t mean that much.

And I had talked to some practitioners who had some pretty misleading views on what the autism spectrum was.

So I kind of assumed that they knew what they were talking about. And that maybe I really wasn’t on the autism spectrum. But I really was on the autism spectrum.

And the ADHD thing: so much rhetoric around ideas like it was being over-diagnosed and drugs were just suppressing function and sort of stuff, that I realized over time, like — you know I’m not saying that medical management of ADHD is always good in the way it’s done, but I felt very misled in the end when I started to use medications for it as an adult and was like, “Oh, you know, that could have really changed my life in some very positive ways if I had really understood it and used it as a kid in a useful way”.

So yeah.

Adrienne: Do you feel like a lot of your personal experience is what has driven your interest: in neurodevelopmental disability, in this field, in psychology?

Michael: Yeah I mean, it’s a little bit of a combination of it. …Wait, can you repeat the question? ‘Cause I just blanked on what you said.

Adrienne: No problem. I was just wondering if in your personal experience, you feel like the gaps that some of the gaps that you saw in your own experience of the health system, the education system, have led to your current interest in being involved in this kind of research and advocacy?

Michael: Yeah, yeah. And I should say something else about this too, which is: like, well, before I had a diagnosis, I always knew I was different in a lot of ways from a lot of people? And everyone else knew I was different in a lot of ways from other people, too. And so I did learn things as you know, they got diagnosed or understood — that kind of thing.

But the other thing about it is, is that like… so like, the core features that you get diagnosed with with autism, I do see them as disabilities in some ways, I see those as things are useful to like, address and change to some degree? Which is think maybe is a more controversial thing to say than I wish it was now?

But the other side of it is that that whole spectrum of having a brain that functions differently has a lot of different aspects to it, and there’s a lot of tradeoffs to it. And it’s not so simple as like “this is a disability” or “this is not a disability, and this is just great”.

Really it’s a combination of these kinds of things, some of which are like really things I value about myself that come from not being neurotypical. And then there’s… so I always understood that I had strengths from things, and things that really [inaudible] sort of my individual personality and stuff out of it.

And what I ran into was a situation where it was like, once I dealt with the public school system, really, they were theoretically willing to try to do kind of remedial stuff around disability things? Although not very good remedial stuff usually. But there is never the focus of doing that because like, hey, I’m a human being who has a life path that needs to be supported in the process.

And so the areas of strength that I had, you know, kind of really got pretty short shrift in the process? And really actually also getting like support and accommodations in the areas that, okay, so the product of what I was doing may have already been beyond typical, but that doesn’t mean I don’t have a disability in the execution of the things involved in doing those things.

And so that really that — that one version of living on the autism spectrum that exists and doesn’t really get talked about a lot today. So like for me they’re really like… I mean, in a certain level, the only reason I care about being able to actually address and change some of the limitations of the disabling aspects of some of these things is because they are in the way of like, what I want to do, and what I believe in and that kind of thing in my life. Or or at least how they interact with my environment is in their way. But I think a combination of both.

And so I really wanted to help people who have things that are important about them, be able to develop them and express them and, you know, like we have a lot of…

If you’ve been exposed to the background — for people listening to this — if you’ve been exposed to background about neurodiversity, like there’s a lot of talk about like, you know, there are strengths and unique things we bring to the world, but maybe not enough focused on really looking at actually what they are, and actually how to support their development. Like consciously?

And I think it’s really important to do that from a young age. And I think actually even over time, we may be getting worse at that? Not even as good as when I was a kid in some ways? And in the guise of getting better at dealing with the more of the deficit, sort of this kind of aspect of it.

And so, yes, it was my own experiences, but also when I got into college and started meeting other people with these diagnoses for the first time — at least the first time I was aware that I was meeting other people with these diagnoses — I started to realize, like: I also had some really, really difficult experiences with all this growing up, and I also had some really very good experiences too.

And I think despite the difficulties, my experience is so much better than average, honestly, for people who are affected by the disability as much as I was.

And I really wanted to sort of try to understand how to kind of resolve that because I, you know, met people who seemed very like they have really wonderful things about who they are and what they, you know, bring to our community potentially.

But like, the reality is that a lot of us are depressed. And a lot of us don’t really have access to the ways of expressing those abilities.

And so people who really, in a lot of ways objectively would have an average level of function as a human being, but just in different areas and distributed differently, who haven’t been able to work, find relationship and other kinds of things like that.

And I just really felt like it needed to change.

And as I started and continue to actually learn about it, I realize sort of like how ignorant the field has been, honestly? About the actual experiences and perspective that exist because, you know, at least a lot of us are able to talk. We can potentially articulate these things. We have the full spectrum of levels of intellectual function that exist in the rest of society.

And yet, like when I started this, I couldn’t identify a single major autism researcher on the autism spectrum 50 years after diagnosis, had been described, right?

I just felt like it was important to change that. Because things that like typically developing people might consider like a base validity — for people not familiar with base validity I meant it appears like it might be possible — but through the things that may appear possibly true about autistic people, the people who don’t really maybe have the experiences themselves or even maybe know a single person who really does on a personal level, can come to conclusions that are wildly inaccurate.

And they can do research that costs hundreds of thousands of dollars based on premises that I could have told you in two minutes that this wouldn’t work or this wouldn’t come up with a useful outcome.

Adrienne: So you said a lot of powerful things and we will talk a little bit more about scientific priorities. And some of your research interests.

I do want to go back and just say I want to correct myself. I think I said “neurodevelopmental disability” and you said “neurodevelopmental difference”. And I know you said that from an early age you felt different than a lot of other kids.

And I want to go back to when you first started to identify with a larger community. I think you mentioned that when you went to college, it was the first time that you really were able to have a regular interaction with other people who maybe were more neurodevelopmentally diverse.

And I’m wondering if you could talk a little bit about how you picked the college, what the college experience was like and sort of how you started to first get into advocacy.

Michael: Well, slight process. So I said that I went to elementary school at a private school, so I went to seventh grade, skipped eighth grade and went to ninth grade at a public school and started having a lot of problems and my health had deteriorated. So I ended up homeschooling through high school. So that’s one of the things that affected my sort of educational course.

I ended up focusing my education on areas that I was good at learning and mostly kind of good at learning on my own because I couldn’t really get a lot of the kind of support I would have wanted in the areas I had trouble with. I had so much of a problem with math and the school situation that I never really was able to get it. It became kind of a PTSD thing, where just looking at a math problem I got a migraine kind of thing.

And so my interest has always been in the sort of science and technology realm as much as anything, and there just wasn’t any really easy way to bridge the gap to where I’d want to be with that. And I had trouble with organized writing and that kind of thing too, even, you know, like typed and stuff, which was better for me.

So I had to look for places that I thought that I would function well enough given the fact that I knew that I probably wouldn’t be able to systematically get any kind of better accommodation than more time to do things. That became clear as I looked for colleges.

The other thing is I was having problems with fluorescent lighting, that I think maybe now may have been as much of a sort of a PTSD response as that there are real sensory problems with it, too. But I think they melded together and started triggering things like migraines for me.

And so I had to find a place that would accommodate that enough for me to go through that. My experience was I just wasn’t able to sort of kind of prove that to people. And a place wouldn’t want to actually take it seriously and would accommodate that.

So I looked for places that were a bit more alternative and a bit more flexible in their education, not so oriented toward conventional grading and stuff like that. I applied to a few places. There’s not really a lot of alternate more alternative colleges that exist, and there’s, I’d say, even less now than when I applied. But I applied to a few places that looked decent and I got into Burlington College, which unfortunately is not in existence anymore.

But it was a great educational experience for me in a lot of ways. I was able to focus on the conceptual aspects of what I wanted to learn and it was challenging that the main sort of output modality was writing, there, but at least that was something I could get help with and work with on a timescale that made me able to do it versus like tests or something on class.

And I did end up becoming a good writer in the process and stuff like that.

But I guess my point is: if I had the strengths I had and I didn’t have the disability that I had, I probably wouldn’t have been that interested in neurodiversity per se, and I probably wouldn’t have taken some of the stuff though, seriously. And honestly, I would have probably become a physicist or an engineer or something like that.

Adrienne: Yeah, Well, and I loved how you described it that, you know, we all have things that we want to change about ourselves when we talk about, you know, things that we we may change, but we also all have interests and strengths that we would like to develop. And that, you know, is the hope of education, is that we can do both of those at the same time. I think that’s a really lovely way to describe it.

So, okay, take us a little bit past Burlington College then. How did you kind of make the next decision about work and education?

Michael: Okay, so when I got out of B.C, I had double majored there. I did a psych major and independent consciousness studies major. And the first thing that I thought of going into was consciousness studies as a field and sort of towards the end of that. And Burlington College is not a research-based institution at all.

So I hadn’t really had a lot of opportunity to have contact with that world at the end. So I went through the Tucson Conference on Consciouness, which is a great conference, but and started to talk with people about, well, like, what about graduate school and what would I be looking at doing there?

And I started to realize that’s a very small, undeveloped field in a lot of ways and the opportunities that existed weren’t that interesting to me and would be hard to get into with the background that I had.

So my other big interest with the autism spectrum stuff.

And so I was like, well, okay, I will apply to a bunch of research-based programs that my qualifications sort of theoretically fit for and that are researching autism in ways that I thought was interesting. And I did that.

And so as I got through some of those applications — which was hard to do too, because I had to deal with things like GREs and stuff, and they were really horrific to deal with at the time about disability stuff and possibly still are, I don’t know–

Adrienne: Were you able to get accommodations for the GRE?

Michael: I was, but by the time I did it actually like made it so that I couldn’t even get some of the applications due in time. And it took so much time just to even get some of the disability accommodations dealt with and stuff, that it also took away time to study for the stuff and really kind of be prepared and stuff.

One of the things a lot of people don’t realize is one of the huge issues around disability is just how recalcitrant places are about really providing accommodations and how much legwork that they require to do things that that should be super easy.

Anyway, my point is that like I got applications in on time, maybe two to four of those places.

And then then I was like, Well, what’s my backup at this point?

So I started looking at what my options were that I could still apply to once I got through the things that were most important to me. And I applied to a couple clinical programs at West Virginia University, which was, as I say, more of a backup plan than anything else.

And I didn’t get in to any. I didn’t even get interviewed for any of the autism ones that I did, which I think is interesting because I actually did have a decent background, and I talked about being on the autism spectrum and, you know, my interest in those kinds of things and stuff. I honestly felt it was rather rude for a place to not take enough interest to at least find out if I was a decent fit at that point, if that’s what their whole program is…

*laughs* You know?

Adrienne: Yeah, it’s surprising.

Michael: Anyways, I was like, well, I could try applying to these things again, which would take me at least a year. And I don’t know if I would be any more accepted than before, although I could do GREs and things like that, or I could take two years and do the social work degree.

So the social work program was the one program I actually got into that I had applied to and I was like, you know, maybe I can actually get some research experience because that was definitely the biggest feedback that I’d gotten about, you know, that people want research experience to do research.

And so I took that program.

I did everything I could to both get research experience during a clinically-oriented degree and also to get background in autism spectrum stuff and focus my work in that area.

And so I ended up doing both of those things. That was what happened there.

And when I’m in the middle of a program like that, too, like my ability to focus on like what the next thing is, isn’t that good, realistically. And so I decided to go ahead and try clinical work before trying to go back for research for a while.

Adrienne: And can I ask: I’m curious how your clinical work in social work has– how that sort of changed your engagement with your interest in autism spectrum disorders?

Michael: Yeah! A lot!

Both: *laugh*

Michael: Well, it was interesting. I mean, first of all, by that point, I’d gotten so many different perspectives and exposure on things and you know, so much also practice while living at an adult rate just with it that was also changing my perspective on things. But doing clinical stuff… when I started, I did some kind of intensive mental health things for an agency first when I started, but then when I really, really decided to become a therapist — and that didn’t work out super great for me for various reasons and stuff. One of the things I realized that I was doing it is that like the emotional impact of working with people in sometimes really difficult situations and situations that maybe overlap challenges that, I really was still having or, you know, dealing with in different ways and dealing with even just the prejudices of parents and other people in the situation is very difficult for me.

And I really couldn’t handle really doing that full time without a lot of sort of work on sort of how to be able to work with that?

That’s one thing that sort of kind of changed my interest and perspective with things.

The other thing is when that first job wasn’t really the right thing, in the end, I decided to create a private practice. And I really thought about like: how do we work with other neurodiverse people?

And I created something called the Mental and Social Health Center was my idea. My idea was to eventually make it into an interdisciplinary practice. And really try to offer a variety of stuff like community-based services and counseling, but things like occupational therapy and speech services or something, but in kind of high quality neurodiversity-friendly ways.

So that was my idea.

My first thing was just to be able to do it and do the work and figure out how things work. So I went into it without having any direct traditional psychotherapy experience yet. I mean, the thing that I did before that was basically family counseling to a degree, but this was different. And it was interesting.

So I found that bringing in and experiences around sensory things and that kind of thing was really helpful. I think it’s one of the more under-appreciated aspects of the condition. And every so often people try to like remove the whole category from the diagnosis? And in fact I think they did that with the latest ICD criteria — yet again. I just think it’s a really bad direction to go because it’s so functionally relevant to how we experience things.

I realize I’m giving sort of long sort of complex answers and, you know.

Adrienne: Well, it’s a complex topic! And no no — I think you’re bringing such an interesting perspective because you have occupied all these different spaces and roles, both personally and in your work and in your own experience with the education system.

So I want to go back. I do want to ask a little bit more about research, and I know some of your interest in sort of design and in sensory awareness, but I wanted to ask first about I know you said in college you started to interact with more individuals — and certainly in your work you were serving a lot of families and individuals — with autism.

I’m wondering sort of when you first saw yourself becoming an advocate and and how your ideas around advocacy have changed sort of over time.

Michael: Great question. So I’ll break that down I guess into two pieces. Okay.

So first is the question of when I first time I thought of becoming an advocate. I thought of myself as becoming an advocate when I was a teenager. So actually, really before that, at least in terms of self-advocacy, but I always knew that I wanted to address the societal issues around that.

And even before I, you know, I saw myself doing disability advocacy specifically, it, you know, in one way or another was something that I really wanted to do in some way, as long as I can remember. Like it was always like just kind of part of my personality, I think.

I’d always had the interest in it in some way or another. Once I went to college I did get more experience doing it more hardcore and really I had the intention from the beginning of like — I mean aside from choosing a little bit of an alternative place to go, I also wanted to choose a place where I could potentially influence the function of it and really be involved.

And so being somewhere really small, I decided to take on any kind of student role that I could where I would have access to like impact stuff with it and learn about that.

And so that’s one side of it.

The other is that there was a pretty active electronic community of mostly parents of people on the autism spectrum at the time in the Burlington area. And I got on their listserv and kind of you know introduced who I am, you know.

And so I met one person who really through his mother who is an older autistic adult through that, and became friends with him. And also just really tried to understand, like, what are the effects of this?

At the time he was in a group home situation, for mental health, group home oriented… and over time he ended up getting his own apartment and that kind of thing there. But that shaped on my interest really, having his experiences. And I met one or two people with different neurodevelopmental differences that my college and that kind of shaped it.

In terms of actually doing direct advocacy for other people, as soon as I really started having conversations with people with similar experiences and who were who were having difficulties with things, I really wanted to apply the skills that I had to giving them ways to, address things in their own life, and also just using my own ability to actively, directly advocate for other people or advocate for the changes that were needed for the people that were around me?

And I would say: so I’m a system thinker, naturally. Although historically, like one-on-one social stuff hasn’t always been that easy for me. Understanding like more like group dynamic social interactions and like kind of things that are organizational level and stuff that’s more intuitive. So I’m kind of a strategic thinker. Even when I was like a teenager, I thought like that I would find like, maybe like, like studying law interesting.

And I also realized that I would probably, you know, just bang my head against the wall every day if I was a lawyer with how much I would be bugged by it, too. (Just giving a perspective.)

But policy was always interesting to me, too. And so I guess one of my strengths like to be able to learn a lot of different conceptual and structural stuff about a lot of different systems and ways of thinking and kind of trying to tie them together to solve problems so that, you know, I think where some of the neurodiversity strengths come in.

Adrienne: How did you first hear about CDCI and and become involved working with CDCI?

Michael:  How did I hear first hear about it? When I first sort of started really looking at it was when I was a student at UVM and looking at different disability-oriented resources and stuff around the University.

If you search on “University of Vermont” and “disability”, CDCI will quickly come up. And so I think that was how I first really became aware of it. And I did a training that was cohosted with the Vermont Family Network and Vermont Developmental Disabilities Community Committee (or I forget what it’s called) . But anyway, they have something called Vermont Leadership Training. And I did that.

And, you know, again, started looking at actually like maybe apply to some committee and stuff, to be actively involved in in the area to do things. Once I was out of out of college and had some time that I wanted to put into it, I really wanted to have some way of being connected into the community of this kind of thing.

And I applied to join the Community Advisory Council there.

Adrienne: Can you talk a little bit about with what it’s like to be on a community advisory council, and what you do?

Michael: So it I think that it depends on exactly what role you choose to take on. The very basic thing is that we meet four or five times a year or something, formally, and the staff at CDCI presents some of what’s going on, some of the topics they’re looking at and that kind of thing. And being on the committee it’s a different opportunity to provide feedback with that but also offers an opportunity to get to know the people on the committee and also the people who are presenting things to the committee and and discover if there’s opportunities you want to engage in more interaction with — like what we’re doing now.

So, I see it personally as like it’s both a vehicle for formally filling an advisory function, but informally just to know what’s going on, and to give input on things so that things can sort of evolve and change and stuff.

Adrienne: And so and you’ve been involved now for how long?

Michael: I think it feels like about two years or so. Maybe. Yeah. I’m also involved with the UVM Autism Collaborative, which has some overlap and stuff and things too. And so that also blends together in my mind a little bit.

Adrienne: Yeah, Can you talk a little bit about your experience with the Collaborative?

Michael: So I joined that after I was a student there and you know, when I found that sort of committee and I just wanted to kind of get back involved with sort of research-oriented stuff, and sort of bringing an autistic perspective to the picture. And so that was interesting. I think at first when I was doing it that it was kind of a new thing.

And there was a variety of levels of whether people were actually really collaborating with research or just maybe talking about different things they were doing in the place and stuff. And I felt like there still wasn’t a lot of really sort of participatory research being done really in terms of a lot of UVM autism researchers, depending on what kind of research and stuff.

So I really wanted to also give input and see like some evolution towards both just sort pf more organization about having really good research done at the University and also more integration of like: how do we capture the perspective of autistic people and get them presented in a meaningful way? A lot of times in my experience in life, if I go in a situation and say, “Hey, I have this experience, this is a problem, I know it’s an issue.”

Like there’s either a direct, or instinctive response people have of like, “Well, you know, you’re one person, you have one perspective.”

But that perspective may have had 2,000 hours of education and focus behind it.

But you might not notice that or something, right?

So I think there’s there’s also in some ways the power in numbers about getting participatory research done and having things echoed by different people and even just knowing that like something that seems like a very clear from experience. Is it right? Is it limited to one portion of the autism spectrum or me personally or something and they don’t realize it?

So I think I can say that what I’ve brought is part of the reason that we’ve started really doing some larger participatory research projects out of out of UVM. And I’ve ended up being like a part of a couple of both of those projects now as a sort of limited employee with it.

And it’s been a really great experience to do that and have a chance to participate in a way that structured so that like it isn’t super overloading to the difficulties that I have in the situation, and using some of what I’m better at in that process too.

Adrienne: So I’m going to ask an unfair question because it’s such a big question, but you’re raising this issue of how to make research more accessible, more representative, more inclusive. And I wonder if you might be willing to just share some thoughts about where we should be heading. You’ve mentioned the need for more participatory research. You’ve mentioned how narrow really the pool of researchers is that it’s not very representative.

What would you like to see as some of the next sort of steps to make research more accessible for more people?

Michael: Well, I think the biggest both long term thing is that the education to be a researcher in a conventional sense of being a researcher, needs to be accessible to everyone who has the desire to do it, really.

And by accessible, I both mean like literally, like: can you even qualify for whatever it is, right? So like my experience of not even getting into the program was one piece of it.

So there’s a lot of level to it, right? If you haven’t gotten adequate support for all your K-through-12 education and then you don’t have a conventional background, like why is that required just for anyone who doesn’t have a conventional background to really be successful in shifting towards the research environment.

And I think just promoting that level of diversity in research-oriented sort of programs would be a major advancement for research in general. Even for people who don’t have a condition or something associated with it, because it brings a diversity of life experiences into it.

One of the problems can be that research can be so expensive and difficult to get into that that may be all that someone’s actually been able to do in their life, that data where they’re doing it. It’s expensive to have the resources put in, for people to be able learn different things, try them,, and then not use them in ways that are considered highly productive in those areas.

But there’s a benefit to having the opportunity to do that sometimes, and to try things can change things. I think one of the things, you know, is that having a more experimental mindset and willingness in certainly the educational system to say, “Well, like hey, lyou might not bring something that’s super conventional but if you bring something unconventional, how do we really support you in that situation?”

And that would be a major shift.

Even if it’s not through a conventional educational path, you know, later on, like now with like trying to just get people in the community involved in specific research projects, to start with, it’s the same mentality required: having that flexibility and adaptation to say, “Okay, like, you may not be able to work a conventional work schedule. How do we provide the wraparound to make this work?”

Or: “You may not be able to count on having the same level of ability to focus on a task at a specific time, but you would want to. How do we make this adapt around it?”

And so some of it exists at the institutional level, and some of it a problem with things like funders and stuff.

I think eventually we need to talk with places like NIH and stuff about how they conduct things like grants and stuff and really, you know, make some of that more accessible too.

There’s a whole other level, though, where there’s a lot of focus on precedent with research, essentially, basically?

And that’s not exactly how the research community talked about it, but if you’re trying to design research, the easiest way to do it is to mostly copy someone else’s. And it doesn’t mean that you can’t apply for a grant to do something really original with NIH and data.

But it does mean it takes an incredible amount of time to work the basic theory of things and to find the justification for doing something that like, experience might tell you is important.

f there’s not more room to cite experience and to talk about experience in the process. So that’s part of the reason I think it’s just so important to do some of the qualitative stuff that I’m involved with and haven’t described. But to get some of those things that say, Hey, this is a reason now to test this, and to look at it using other research methods and stuff because we’re limited by that paradigm of, you know, precedent.

So the other point about this is like, I think for, let’s say like an institution like UVM, it’s not super easy to do this kind of stuff in some way. The cost of living in most places that you can do this kind of research is high, and you have to be able to pay for people to have a reasonable lifestyle and researchers and stuff.

Then you have to be able to pay to do the research activities too, right? But then also, like good science, really requires room for creativity and experimentation and and taking chances and things like that. So I think part of the problem is that we need society to recognize that it’s important to fund things in a way that that’s possible.

And we don’t have to be super conservative about all of the approaches being done to things because like it’s lots of people scrambling for a very tiny amount of resources to do something.

Adrienne: So can I ask you to talk a little bit about some of the research that you are involved in and some of your own research interests? I know you mentioned some of the qualitative components.

Michael: Yeah. The research team currently involved with iss funded by the Patient Centered Outcomes Institute, which is something that’s newer, and created by the Affordable Care Act. So a lot of people aren’t as familiar with it at something like NIH, but it’s actually, I believe, a bigger funder than NIH is, just in terms of how much money that that a grant does get. I learned about that kind of when I was a doctoral student.

But what we’re doing now is sort of starting to lay some of the basic framework of participatory research in in the Vermont community. So the first thing we wanted to do is actually collect information on what people feel like they need, to be involved as research partners.

So that’s the first project that we’ve done is basically to try to conduct some focus groups and other sort of qualitative methods of getting feedback from people in the community,  including from from parents and people on the autism spectrum, and sometimes sort of providers and other people too. When the first project was just basically asking basically, “Well, what do you need to show up? What will make you feel comfortable? Like how do we do this correctly?”

And then the second project that I’m involved with is around health care transition, so that’s really transitioning from child to adult healthcare. But effectively, that means you have to understand what’s happening with adult healthcare too. And child healthcare and how to make it work better in both of those things.

So my interest in some ways is a lot about just improving both those systems. I think the transition process is bad, but like if the systems worked right, that’s not the biggest problem, honestly, the transition itself?

But I think I think like our society doesn’t like to acknowledge adults with disabilities in a certain way.

The closer you have to children who are perceived as like more sort of innocent, the easier it is to get people to want to, like, embrace solving a problem. And the other reason is that people like want to make problems go away early, which is in some ways if you can and they’re just problems, and you’re not getting rid of something important, that’s fine. I agree with that. You know, like, I think it’s great to try to support speech development in young children and stuff and and make it clear that people aren’t dealing with the sort of emotive consequences of things?

But anyway, the so we’re looking at health care transition partly because, you know, there was an opportunity to do that that was created somewhat externally and we took it and we’re making it the best that we can with that paradigm, which is a good enough starting place in my opinion, to start asking these questions and stuff.

And so really the other component of all of this is just all the internal stuff that goes into figuring out how do we do this stuff? How do we do it right? Where do we run into challenges? We’re also actively really researching that from our own internal process of the people involved with the neurodevelopmental research at UVM really haven’t done this stuff before, mostly at least.

And so we’re kind of learning and inventing stuff as we go along. And I think it’s actually like even the sort of subtle background stuff that we’re doing? Is pretty pioneering. I think  in the areas we’re looking at, like we really didn’t find equivalent projects mostly in the past. There were some around healthcare transition, but mostly it’s not been done that much.

Adrienne: Wow.

Michael: My research interests are are broad. I’m interested in being involved in a variety of things, but definitely I’m interested in facilitating the existence of participatory research, and getting that going and getting things documented in terms of different ways people are experiencing things. My interest there is partly to make sure it’s done well because I think often if you don’t ask questions really carefully, like you’re not really giving people an opportunity to express themselves who haven’t had a lot of practice talking about a specific issue. And you can not see the depth of what’s happening. So that’s why one the reasons why I want to be actively involved in that kind of thing is to just make sure it works right.

My personal interests though also go a lot into more like the realm of the neurocognitive demands of things.

So like, ideally, I would love to see more youth — like I think some of the things that inspired me when I was really trying to look at going that direction years ago were like there’s been a lot of research doing things like functional imaging of brain processes but virtually nothing done to actually utilize that information? And nothing done to make that research even useful to the research participant?

And I feel like there’s powerful cognitive tools and even, you know, like research tools that could be used to help better understand individual people in certain ways that I’ve been really — I think the potential of that been really misunderstood by the research community and honestly ignored.

Okay, let’s say with something like attention, for example. I think that’s one of the areas I struggle with most now in my life, is to be able to intentionally focus on specific things and, really be able to be productive in them on some level of a schedule with it, which is really helpful, even aside from all the external demands and maybe overt demands on that kind of thing, to be able to say, “Hey, I really like this. I’m going to choose to put aside five  hours at 2 p.m. and do this activity” and to be able to count on my brain working well at that time would be helpful.

And I think there’s a lot that we can do to understand what the barriers to the different cognitive processes are, and how to facilitate them and how to accommodate them, that we’re not really using the research tools we have to do.

If I really had the ability to really do what I want to and have the resources I’d want to, which would probably include a lot of ability to delegate pieces of things, I would probably try to get into some of that area and really advance the development of it and stuff.

But I guess if I had my personal dream, I would really be able to facilitate a program of research and try to really integrate things across different and tools and other kinds of stuff, build good theory around things so there’s no pathway for theoretical research that really exists in the field.

But a lot of times like, you know, all the research that’s been done is just integrated, haphazardly at the beginning and end of experimental research papers that not really, I think how we should be doing it.

And so like that’s the other kind of thing too: trying to understand everything, building theory around things that integrate like knowledge and then communicating it at different level of communication that really provide things from even very simplified plain language stuff to complex stuff that gets into the full depth of research but it is friendly for either a layperson or a person not familiar with a specific area of research. It’s possible to do things and understand things and stuff.

And the other piece of that  communication side of things that I think of lot of times in my field, is that things are thought of in terms of services and stuff. And I think for a lot of us on the autism spectrum, information can be the service sometimes.

Like if we have information that really tells us ways of looking at things differently, doing things on our own, do-it-yourself is a really powerful tool that that avoids a lot of potential conflict with providers. It avoids a lot of funding issues, and if we have things accessible, I think that would be part of the big change of things to.

Adrienne: That feels like a really positive note to end on.

I think we could probably talk for hours and maybe we’ll come back and talk again, but I just really want to thank you for your time for sharing so honestly from your own perspective, as well as just your role within our organization. And we really appreciate the work that the Advisory Council does to help inform the design and the direction that the Center’s work takes.

Is there anything else that that you want to say at this juncture?

Michael:  I think it I think it’s a good place to kind of wrap things up. I would say that it’s been definitely nice to have the opportunity to talk about some of this. And there were things I think we were thinking of talking about that we haven’t had as much opportunity to as we could. But I’ve enjoyed the opportunity to just really express some of these ideas and stuff, and I think it’s not easy to talk about this stuff fast, because there’s a lot of experiences to communicate about that don’t overlap most people’s everyday lives.

So I do hope that we can potentially do more of these conversations and because I think the way we did it today is great and it takes a long time to get at  some of the most valuable things.

So yeah. I look forward to any, you know, future version of what we do and I hope anyone watching that has gotten a lot out of this. And so yeah.



Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

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