Neurodiversity panel invokes lively discussion covering wide range of topics on autism
By Renée LeClair and Kris Rau
April 22, 2021
In recognition of Autism Acceptance Month, VTCSOM faculty and students hosted a panel discussion focused on social aspects of neurodiversity. Panelists included a range of social, clinical, and lived experiences providing a well-rounded, open discussion. Panelists spoke candidly about what an autism profile ‘looks-like,’ commenting, “Everyone will have a profile that fits the definition of autism, but everyone's profile is going to be quite unique. It's also going to change over their lifespan, and in response to stress; it's not really like a fixed classification.”
The panel discussion spanned topics from addressing barriers to health care for neuro-divergent patients and their families, aspects of universal design, and current research. Panelists commented that many of the challenges to care are within the ‘pre-filters’ related to the office visit, such as paperwork complexity and scheduling appointments the day of, or two weeks out.
Barriers to insurance and employment were also touched on, as many autistic individuals do not feel they can be openly autistic at work. One panelist commented, “Even though we [autistic individuals] are more likely than the average neurotypical person to get a Ph.D., once we have it, something like 85 percent of us are still unemployed. Increasing our education level does not seem to necessarily guarantee employment.”
Importantly, panelists offered advice to approach any interaction from the basic premise that there is a natural diversity in people's brains. Autistic individuals comprise approximately 2% of the general population worldwide, and rather than focusing on correcting the individual, we should be focusing on making sure that they have the supports in place to thrive. Panelists echoed the importance of getting to know the families because they have a unique perspective and likely holistic understanding of their individual needs.
Finally, the concept of being flexible and creative in terms of communication strategies to meet individuals where they are was heard throughout the discussion. Dean Lee Learman closed the session, reminding all of us that, “… individual differences are vast, so understanding each person's perspective and meeting them where they are is the key.”
Chair, Department of Basic Science Education
Good. Good morning, everyone. Thank you for joining us. I've just moved our panelists back into the main room and hopefully they've had a minute to chat with everybody and I'm going to post their personal descriptions in the chat for everybody. So we've got five panelists joining us today. And I'm going to go ahead and let everybody introduce themselves. But before we do, thank you again everybody for coming. We've got a wonderful mix of students and faculty, and staff and community members online with us this morning. There is a cohort as well in the classroom in person, just based on our flexible format this year. So we will be moderating both the chat as well as in-class questions. So bear with us with that. So again, we have five panelists joining, with us in this format. This session is intended to be completely flexible and open. So really just to address any curious questions anybody's coming up with as it's around neurodiversity. April is autism awareness month. Then, given that we are in the medical student's course on neuroscience, we wanted to take this opportunity to have this talking session. So with that, I'm going to open it up to each of our panelists. So you just give a brief description about yourselves. And then we can open it up to the group for for questions. So Elizabeth, why don't you start us off?
Elizabeth McLain, instructor, co-chair Disability Causus, Virginia Tech
Sure. Thank you. I'm Elizabeth McLain. I'm an instructor of musicology in the School of Performing Arts here at Virginia Tech. Brief image description, which I usually do on disability things to make sure it's accessible for folks who have visual impairment. I'm a white woman in my early 30s. I have long blonde hair and I've just got a wall with some posters behind me and my crutches, my orange smart crutches over in the corner. I am autistic. I also have Ehlers-Danlos syndrome, which is something you see happen a lot. The two seem to kind of run together and families. That's why I use my mobility aids back there. So yeah, I describe myself as disabled, as autistic, as neuro divergent. And I'm happy to be with all of you this morning. I am the co-chair of the Disability Caucus and we work closely with the Disability Alliance. And that is an organization that's here to serve the disabled students, faculty, staff, and community members. So if you are interested in getting connected with us, shoot me an email afterwards and I'd be happy to connect you.
Thanks. Wonderful. Do I see next? Hani, please introduce yourself. Hello. Hi.
Hani Awni, autistic graduate student, Virginia Tech
I'm Hani Awni. I am a disabled autistic engineering grad student here at Virginia Tech. Just brief image description. I'm a Middle Eastern white, male looking person wearing a red shirt and red glasses with a unfortunately very bright window behind me and my bed with a weighted blanket. The whole nine yards. Alongside an awkwardly, overloaded tower of random miscellanea in the back. I do work. I'm also here having been GSA President from the previous year. I'm not this year. And so can speak somewhat to make institutional stuff on that end. And then, um, yeah, I am able bodied as well. So I do not have other I guess I have an ADHD diagnosis, but yeah.
Thank you. Chris Brown, you're next.
Chris Brown, family therapist
Sure, so my name is Chris Brown, I'm a licensed marriage and family therapist and a certified child life specialists. So my background is working in mental health arena. I worked with individual adults doing psychotherapy as well as marriage and couples counseling. And I work with children and families as well. The child life specialists diagnose certification, if you aren't aware of what that is. It's a hospital educator and teacher. So I worked for a variety of time. I have worked at Cardon Children's Medical Center, in Mesa, Arizona, Phoenix Children's Hospital for about five years and their surgical unit, and emergency department, as well as general pediatrics. And I've worked at Carilion Children's Hospital for a period of time, supporting children through medical procedures and supporting them afterwards as well in that environment. So the subjects near and dear to my heart, because I've worked with a lot of children, families, and adults on the autism spectrum and both mental health and in the hospital setting. So hopefully I can lend some, some insight for any of you questions that you might have about what that entails and what the family dynamics as well as what it's like in the hospital environment for patients and families that have a member that's on the autism spectrum.
Thank you. Felicity.
Felicity Adams, division director of child and adolescent psychiatry, Carilion Clinic
Hi, my name is Felicity Adams and I am in my capacity, at Carilion Clinic. I work as the Division Director of Child and Adolescent Psychiatry and over the years, my practice has evolved to be primarily to serve people who are identified as autistic or have other neurodiversity and their families. My background prepared me for that, not very much at all. And then I came to it about 10 years ago and really found that is where I feel most comfortable and at home. I really love the families and patients that I work with. And Together we help them reach the best possible outcomes.
Catherine Lavallee, first year medical student, VTCSOM
Thanks Dr. LeClair! My name is Catherine Lavallee. For a visual description, I'm a white woman with brown hair wearing a blue shirt, and I'm sitting in a classroom setting. I'm a first-year medical student here. And I'm also the proud older sister of my little brother, John Paul, who is autistic.
Thank you, everyone. All right. Thank you for your introductions. I will open it up for for questions from the panel, from the odd chance if anyone has any questions to start off with? And if not, I have a few. No? All right. Just to start the conversation for everybody. Carrie Knopf, has got some questions here. Carrie, are you online with us? There we go. Yeah I am! Wonderful! Carrie has provided some questions and you're welcome to chime in here, but your first question to start the conversation: In your opinion, and this is open to all of the panelists.
[8:19] What are the key barriers to health care access for neuro-divergent patients and their families?
Who wants to start us off?
I could start. I find that there are points in the lifespan where this is more difficult than others, but early on, I think children who may have developmental differences can access care fairly easily. But as time goes by, sometimes there are barriers to care based on office spaces not being designed sensitively. Places where individuals cannot be comfortable and therefore they may have behaviors that are identified as atypical. Some families find that when they call and ask for care, practices will simply say they don't serve, in particular, autism. And there's a variety of neurodiversities, but many families struggle with that. Also at transition age, when kids are 18 to 25, there's a huge dearth of services and expertise and it can be very hard to find care. Thank you.
I'll go ahead and jump in Sort of in line with that, So I Sort of expanding on that, that huge dearth of services later on, a big part of that transition is that at that point you're dealing with a multitude of things that are just the actual process of getting an appointment, navigating the US abysmal health insurance system, navigating all of the additional complexities of coverage of where you get that insurance from. Thankfully, Obamacare expanding up to 26 is useful for that. Your parent's insurance expanding up to 26 is useful for that. But, you know, obviously that's dependent on your parents. And, sort of navigating from an executive dysfunction point of view, which is especially common for a lot of different autistic people.
Like, all of the, I would say actually much of my own struggling with getting adequate health care. Is actually in all of the pre filters before I make it through the door on appointment day, and just all of that, like paperwork complexity, and phone calls, schedule your appointment the day of, schedule your appointment for two weeks out when you're timed right. So what does that mean? All of these kinds of complexities really then serve to compound that, and then when it starts getting into, okay, well, here's your prescription.
Now you get to navigate the whole actually filling your prescription when most likely your income is lower as a disabled person and most likely your like you have to make use of good RX and these kinds of a prescription and cost reduction methods or maybe jumping around between different prescriptions by different pharmacies. So now all of this is phone calls and follow up, you have to take on as a patient just in order to secure a list of stuff. And then at the end of the day you need to still actually take one. And so that then kind of compounds with all of these other factors to become just sort of ... And this is obviously, speaking for a lot of things that are specific to autistic adults, right? Hopefully the parents of autistic children would be helping and providing support and some of these things that I've mentioned, but, um, you know, yeah. Yeah.
I think so too. Yeah, that's a great point that you were making Hani, that parents, oftentimes are these amazing specialists with their child. I once had a seminar on autism where the presenter said, once you've seen a child or a person with autism, seen one person with autism. There's such a diversity within this diagnosis and any diagnosis, any ways is a human construct or especially with mental elements or the DSM. These are terms that we use as professionals to try to categorize a group of individuals. But within that group, there's so much diversity.
And parents have to advocate and they try to advocate in the pediatric setting for their children. I think that barrier when you talk about that advocacy is the hospital setting itself. My work as a child life specialist. When you work in a in a surgical unit. There's time. And time is very important in that setting. You come to the pre-op area, you go to the operating room, there's post-op and many times you're going home within an hour to an hour and a half of a routine surgical procedure. That's a lot of time for a lot of children, especially on the autism spectrum, to even adjust to the environment, the medical environment, let alone for their parents to advocate for them in that environment too. And that creates a huge barrier.
There has to be really a multi-disciplinary approach to working with families and children on the autism spectrum because their parents do know what works and what doesn't. Most often than not, this is not their first experience in the hospital. They've had to come from many different reasons and for many different problems. So listening to the family and collaborating, communicating from a person like me, who is a child life specialist, to a nurse, to a doctor. And everybody getting those pieces of the puzzle together and working together as a team.
Especially when I worked at Phoenix Children's, I felt like that was definitely the case that you would have anesthesiologists, surgeons, nurses, child life specialists working together and us getting together in this setting and talking about what the family share with them. What our approach is that we would take with each other, but it's a barrier for families because hopefully in that 10 minutes or 15 minutes you're in the pre-op area in that half an hour, you'll be able to find that one person that will be willing to listen about what worked and what didn't work the last time you were in the hospital. So I think that's a huge barrier. And it's also a huge warning to health professionals that this really does take a collaborative effort and really working with the families because the parents really do know a lot. And I found a lot of keys to helping ease anxiety and discomfort of kids on the autism spectrum comes with their parents and the information that they're telling the healthcare professionals.
Thank you so much for this question, Carrie, I'm going to try sharing something. I'm, I'm doing this super autistic thing here, which my students have gotten very used to, which is making sure we're all on the same page with terms. But I wanted to show you this. It's not scientifically accurate by any stretch. But I find it a lot more useful when we're thinking about autism to think that the autism spectrum this way as kind of like a color wheel.
When you are encountering folks who are autistic, friends, family, patients, co-workers. They have a profile that fits the definition of autism, but everyone's is going to be quite unique. It's also going to change over their lifespan. It's going to change in response to stress. So it's not really like a fixed classification. You can slap on someone so much as something that's very fluid. There are all of these different dimensions where someone may be having more or less, either trouble with something or more or less, resembling the kind of behavior pattern that we identify as autistic.
So one of the first barriers that you're going to come into is just diagnosis. Our definition of autism, every version of the DSM we keep kind of improving. We've shifted as all of you probably know with the DSM-5 towards this autism spectrum disorder because there was no statistical significance between people getting a high-functioning autism diagnosis versus Asperger's. You know, a lot of those distinctions were not actually helpful. But the thing you need to know is that most autism research, historically has been fixated on white boys, kind of age eight to 12, eight to 10 especially.
So there's a particular way that autism looks from the outside that fits this particular demographic mold. This means that girls and women can get missed. They tend to be diagnosed later when it's caught. This means that people of color are actually more likely to get diagnosed with things like schizoaffective disorder and bipolar disorder before getting an autism diagnosis. So the first thing is just kind of knowing what is going on. Like understanding that you're dealing with autism. I'm sorry, I'm trying to watch things in the chat at the same time here.
Now, the other thing I want to mention is that folks who are autistic are more likely to identify as gender fluid, transgender or other sorts of gender minorities. So you have this added thing that you can't just say this is what male autism looks like and this is what female autism looks like. It's actually quite, quite complicated. The other term I was going to introduce, "neurodiversity" sometimes stands in for autism, but I like that we've pointed out already, that autism is just one form of neuro divergence. It's just one way someone can be different. So the basic premise that I'm operating from is one that assumes that there is a natural diversity in people's brains, right? Autistic individuals make up something like 2% of the general population worldwide. This is a naturally occurring difference. And rather than focusing on the individual and correcting the individual, a lot of times, what we should be focusing on instead is making sure that they have the supports in place to thrive. Making sure that their environment is sensory friendly and all of that. So these kinds of obstacles to diagnosis, I think, are probably one of the first big barriers that you're going to see.
The second one is autistic folks being believed at all. Right? So, I speak. I didn't always speak when I was a child. I stop speaking entirely for awhile, but I speak now unless I get too emotionally stressed, which can happen in a doctor's office. So one of the best things to do is make sure that your patients have a means of communication that is not strictly speaking with their mouths. It can be communicating with a letter board. It can be texting on their phones. That's actually the way I handle it most.
I have autistic students who also will kind of have this selective mutism, such an odd concept because it's not like they're selecting to be mute. But anyway, we use cell phones and typing in the notes app and cell phones a lot in those instances. But the other thing is, even if I am speaking with my mouth, if I can't make eye contact. There are a lot of folks who believe that if someone's not making eye contact, they're being evasive. You kind of have to set that away. There's no actual evidence to back that up. There have been a couple of studies that suggest that liars will make eye contact after their lie to see if they're being believed. So it's not helpful. But it does mean that at various times I have been accused of lying.
The other big thing is that my facial affect isn't going to look the way you think it should when I'm experiencing a particular emotion or pain. So on one occasion despite a long documented condition where my joints dislocate quite a bit including shoulders and hips, very painful stuff. I encountered one doctor who decided that he was going to prove all of the other doctors wrong, I had been faking for two decades because my face didn't look the way it should have for the pain levels I was reporting. This is a big thing. Like, you cannot look at an autistic person and know what they're thinking. You just can't. We often treat this, in autism literature you'll see this described as something called theory of mind, right? That autistic individuals can't tell what's going on in someone else's head.
But the newer research suggests, and I can drop some links for you later because there's one study that just came out within the last month. What we're looking at is actually a double empathy problem. Not autistic folks. I'll say neurotypicals because it's unclear where folks like those who have ADHD and other sorts of neuro divergences fit in this picture. But neurotypical folks are very good at kind of filling in the blanks for what another neurotypical person is thinking because they can just go, Oh, this is what I would be thinking in that situation. Their brains are more or less similar. So they can be right a decent percentage of the time.
Autistics on the other hand, we can predict often what other artists are thinking, but we can't predict what neurotypicals are. So it creates this double empathy problem where you do not know what your autistic patient is thinking and feeling based on the way they look and they don't know how you feel based on the way you look. So that is a big issue. Another thing is that a lot of your autistic patients are not going to have insurance. The unemployment rate for autistic folks is very high. It's probably artificially high because we're missing decades of autistics who did not get caught with diagnostic models, older ones. Also because so many of us cannot be out and openly autistic at work. But right now, it's, it's a pretty grim picture in terms of unemployment.
Autistic folks are not valued or supported enough in the workplace to keep jobs. So even though we are more likely than the average neurotypical person to get a PhD. Once we have a Ph.D, something like 85 percent of us are still unemployed. Increasing our education level does not seem to necessarily guarantee employment. So in this country, if you don't have employment, you might not have insurance and you might not necessarily qualify for Medicaid.
Hani mentioned issues with executive functioning. One thing I'm dealing with is I have a genetic condition. That means I don't have one doctor. I have a dozen doctors. Literally a dozen. The last time I counted I needed 12 specialists I have to check in with at least once a year. I'm also in physical and occupational therapy quite regularly. I cannot manage this number of appointments. I mean, I'm also teaching four classes and four different disciplines at the university wrapping up my dissertation, like there's a lot going on, plus a pandemic and all of that, all I needed was the support I had at Michigan, which was a care manager. Somebody who literally spends the time on the phone calls, and makes these appointments for me, reminds me when I'm supposed to go places. At the University of Michigan, we had a great portal, so everything was in the same system. But I also had someone I could call and she could set up my appointments for me. She'd remind me what to do. I tried getting that set up here in Southwest Virginia and I'm on the board for our local Center for Independent Living. I feel like I know the system well. And yesterday I was told that I need to move into a group home in Richmond because I can't take care of myself. So this is kind of the sort of assumptions that are made about us. The supports that we are given don't always match what we actually need. And that really becomes a big problem. Sorry, I covered a lot of ground there.
No, I very much appreciate that. So I think you covered and articulated lot of really important things. To sort of expand on that double empathy problem a little bit ... The thing that I've mentioned this sort of at the Choices and Challenges Forum, for people who happen to attend that as well. But the operating model for understanding how you're interacting with autistic people that I would really suggest instead of viewing it as like, "oh, they're like neurotypical people, but with some deficiencies," is really more of like an intercultural interaction and an intercultural discussion. Right?
So here in the US we expect eye contact. We expect ... really here in the US in white culture, we expect eye contact. We expect some specific aspects of how we bodily relate to each other. When I go and visit family in the Middle East, or when I was growing up as a child and being raised Muslim, I would interact with family members who do the kiss on each cheek and we don't consider that a medical dysfunction. Right? And I would interact with family members, where me making eye contact as a child with them would have been a challenge and would have been sort of like challenging their authority as an elder, and yet that doesn't get medicalized because we recognize that that's an intercultural difference.
So part of that, like what Elizabeth was talking about with the ... that then compounds with the difficulty of getting diagnoses. And especially then with the sort of like hyper simplistic models that have previously existed of what autism even is. Which means that then when you're interacting with especially undiagnosed autistic people, it's a weird instance of interacting across cultural difference where the person doesn't necessarily know that they're part of distinct sort of culture in terms of their behaviors, how they navigate social spaces, right? And in the same sense that sort of being forced into conforming into a white society does induce stress and does induce a whole lot of extra mental health complications and everything for like sort of navigating across different cultures. That does then cause all of that additional extra stress.
As an autistic person, it does cause all these kinds of, like, intercultural communication differences. And I know it's weird to think of it in terms of a ... like this idea of people can be born into this culture that they don't even know exists, right? But, I've found that to be a more useful way of understanding it in terms of like particularly neurotypical-to-autistic interactions. Oh sorry. I didn't mean to interrupt. Yep.
We're going to interrupt a lot because we don't always know when someone's done, like we've been behaving thus far, but this is part of autistic culture. Two things you said were fantastic. One, I do want to point out, I do have some doctors that insist on me making eye contact with them when they give me important information. And some of them have been trained to like make autistic people make that eye contact. If I'm making eye contact with you, I can't hear anything you're saying. If I'm looking away and fidgeting, I can hear what you're saying. So just kind of be aware of that that so when they make me make eye contact, I look right here on their heads because they can't usually tell the difference. And it's like 50 percent of what they're saying do I get, which is really not good because I go to my appointments alone and I need to hear that 100%.
The other thing you said about how you might not even know you're in this culture. This is so important and this is something unfortunately that's not great about the, the sort of broader autism community. Autistic kids need to know that autistic adults exist and they need to meet them, and they need to understand that there's a culture and there's people like them.
When I was finally diagnosed, I had a series of other diagnoses before they kind of figured out what was actually going on and I didn't know what that meant. And weirdly enough, I also kind of around that time had to go live in France for a year by myself. So there was a lot going on. And when I came back, I met some autistic folks who actually helped me understand, because the way autism is described in most materials is what it looks like on the outside to a neurotypical person, but it's actually not a great descriptor for what it feels like on the inside. And how to cope and how to engage with all of these things.So that idea that meeting other autistic and finding that community can be so incredibly helpful.
I think a lot of the ways we try to fix autistics, I would say a good quarter of my autistic friends do not speak with their mouths. And probably about a third of them would be called Level 3 in certain areas or would be considered high support means. And the neurodiversity movement, there's often sort of a claim that we're leaving them behind, and that couldn't be further from the historical truth. If you look at the history of the neurodiversity movement, most of the work started with high support needs people. The thing is, even those with high support needs are going to recognize themselves. And autistics that are better able to mask, better able to pass as normal, like usually I am, although I feel like I'm not winning today because I'm stimming like mad under my desk. We still recognize things about ourselves. We still find ways to kind of support each other. So I'm, you know, you have to monitor these things, right? So I'm not telling you to go send kids to random adults. But I am saying if you're working with children, whether they're yours or someone else's who are autistic, meet some autistic adults and find some good mentors for the kids, because that can be life-changing.
Growing up, if you're the only autistic in your family, you might think there's something deeply, deeply wrong with you. And I don't think ... I think that is a huge factor in things like the high rates of depression and even suicidal ideation. This statistic is not great because we're missing a lot of older autistic adults. But when I was diagnosed, they told me the average life expectancy for an autistic person's 36. I'm 32. There's a lot of things skewing this data, so don't necessarily believe that, but this is the sort of culture that you're told. You don't meet your elders. You don't know that they exist, and it's very important to know that they're out there and that you can have a great life. Sorry.
This is wonderful. I'm going to jump in with some combined questions from the chat. Really two different barriers that people have both asked about.
[32:30] What are the potential solutions for individuals who don't have a formal diagnosis? What are opportunities for individuals who fall into that category?
And second, how do you manage parents who may have a fixed belief on what, what normal development should look like and be resistant to solutions for these things. I don't know. Felicity, you want to start us off with that?
Well, to the first question, I think it would really matter if the individual asking the question was kinda wanting to know how to get a formal diagnosis or just what if I'm not all the way to autistic, but I have a number of differences and needs that need support. I mean, I think those are two different questions. So in terms of how to seek care or ask the question about a formal diagnosis, I think ... either psychiatry or maybe the Virginia Tech autism center around here have numerous people who would be competent to discuss that with an adult. But I do think that the beautiful thing about neurodiversity and the way that the advocates within the communities that are represented there have helped us all to see that because there are individuals with higher needs of support and we understand how to support them, we can become better at supporting people who perhaps don't have a specific diagnosis, but maybe more sensory defensive or need more time to recover from whatever work or social events, things like this. And I think we can take away many of those tools. So for those of you who if someone's asking the question, "Yeah, what about differences," I think you can get a lot of supports from resources available for folks who are identified as autistic and learn a lot of tools.
The second question I might need clarified. So was the question about the children, what if parents don't celebrate their neuro diversity or they're trying to, you know, kind of modify their development to a more typical form? Is that what's being asked? Yeah, so the question from one of our students was,
[34:50] How can health care providers help parents who may have fixed beliefs on what normal child development looks like and maybe resistant autism diagnosis.
Okay. Well, in my experience, there is sometimes a hesitancy to label, especially when it's somewhat mild. Parents may feel that it's not going to serve or it's not helpful. Autism doesn't go away, so I don't feel like you have to rush families. You know, I don't force people to a particular diagnosis if they're really not open to it, but over time the supports will be needed. In other words, if we're correct with what we're recognizing in a young person, even if their family is somewhat resistant to that particular label. Sometimes I'll just sit with that and let people keep coming back. And, you know, often we move from ADHD with sensory processing differences or a mild speech delay or some toe walking or whatever. And then like over time, it just becomes more clear and after there are more challenges, maybe the family is somewhat more accepting. The whole development of a child no matter who your child is, is a process for a family. And so I don't think it's necessary to push people extremely as long as I can keep a rapport or relationship met, I feel like, you know, we will come to it together over time. That's how I usually approach it.
Hi, I'm the person who asked the first question in the chat, and so this is kind of harking back to that original first question. So a lot of the answers that people provided rely on an actual diagnosis like the parents have to accept that diagnosis, they have to seek it out. But this happens a lot as a child, but so many kids slip through the cracks, especially those assigned female at birth, people of color like Elizabeth mentioned. I'm speaking from my own experience here, and so can anyone speak more to the barriers and solutions and ways to support these people? Particularly young adults, who either don't have or don't have access to a formal diagnosis. Because the process of formal diagnosis, particularly as an adult, is very complex and extremely expensive depending on where you are and your insurance situation. So if anyone has anything that they would like to say on that, I'd love to hear your opinions.
You mind if I jump in on that a little bit? So I don't have a formal diagnosis either. Which might be a spicy thing to share as a participant on an autism panel in a medical setting where probably formal diagnoses are viewed as essentially mandatory in order to claim that. Right? I'm self-diagnosed. My therapist agrees with this. My psychiatrist agrees with this. I got diagnosed as an adult. But when I've talked with my family doctor from when I grew up, my family doctor believed that I had autism and attempted to tell my dad, and my dad refused to hear it, refuse to entertain that idea. Right? The way that I got my dad to come around to that now was actually sharing on the atrociously bad autism research that's still happening. These kinds of publications that are like, autistic people have a failure of empathy because they refused to accept bribes to cause pain to another person.
Yeah, do you have the link to that Hani, or do you want me to grab it? Because that was an amazing study. Not positive amazing. Yeah. So the study basically said we have a deficit because we have integrity.
Yeah. And so that's been helpful for me to then basically go to parents and be able to express like, well, the common idea of autism is so bafflingly, completely, moronically wrong. You really kind of need to work from scratch to understand what autism is and abandon all prior preconceptions. Because if this is considered acceptable publication about what we are and what we're like then ... God only knows what else is totally off the mark? And that's been useful for me with my dad being a scientist. That said, I think notice how a lot of the things that we talked about with regard to ... sort of, how to interact between the medical professional and the patient, a lot of that is about abandoning expectations for neurotypical norms and communications in your particular culture and being flexible about that, regardless of what that looks like. And so I think some of that, these kinds of things that are specific to the things that I personally deal with, as someone who doesn't have too many sensory issues in a medical context.
And on some of this, like, I think I wonder how much there's possibility there for sort of looking at it and going like to what extent is this space being made as accessible? Like what barriers are being put up in the process for getting here and the process for the full process of being a patient and just actively removing barriers in the first place and actively trying to change the structure of your medical spaces in the first place. So that regardless of an individual patient's needs, when they come into the space, it was designed for someone who has any given need, works for them. Right? And then it's not an issue if someone has a diagnosis, doesn't have a diagnosis, has a self-diagnosis, but not a formal one. Because the space has been pre-emptively rendered accessible, kind of following this principle of universal design is the idea there.
The other thing that I did want to shout out to is you may have out of luck. So, um, even if you specifically seek out, you know, people who would be labeled as low functioning autistic voices on like online autistic communities, you'll still find their own descriptions of their own internal experience have gotten more just joy and a lot more like open celebration of who they are than any of the perspectives, especially of the parents very often.
And there's a lot of tricks and tools that we as autistic adults share with each other, that often we're encountering 15 year-olds who suspect that they're autistic, but their parents aren't okay with that, but they saw some paperwork in the doctor's office through a glance and manage to google some terms to find something out, right? And we're often in a situation where we're sharing a lot of these tools and tricks that are things that don't even register to people who aren't dealing with things we're dealing with and navigating the world as we are.
I always mentioned this Alpha Smart 3000, or this is the Neo 2. As an example of this is a digital typing device that doesn't connect to the internet. It only exist as like an external keyboard you can write on. Nobody would look at this and say that it's a disability support aid. And yet this has been single handedly responsible for me being able to be a graduate student and using devices like this before in both my undergrad degrees was the sole reason why I was able to complete the degree. Because with this, there's no distractions and there's no avoidance and it's hard to edit. So all you can do is put words on a page. And as someone with executive dysfunction and a lot of anxieties around a lot of different things that's useful. This is just as an example of like ... there's a lot of things that are like that. Things that nobody would in their right mind think of as, you know, this is a tool or a trick that can be useful for autistic people unless you're an autistic person and we're swapping these kinds of strategies with each other.
So yeah, basically pointing people to the actually autistic community, or especially in this month to autism acceptance month, um, which is sort of a response to Autism Awareness Month. Both of those may be useful for figuring some of that out.
Great. Yeah, Catherine, Chris, anything to add as you have been listening?
I'm going to go back to the first question, and Elizabeth and Hani both kind of talked about this, but I think about transition care a lot since my brother is going through right now and I'm a medical student, and if you search on PubMed or Google, like how to be a doctor for an autistic person or something like that, almost the only thing that comes up is how to make an autism diagnosis. And I find that pretty surprising because autism is not the only diagnosis or health care than an autistic person is going to need in their life. Especially with so many ... Honestly like pick a disease in any organ you have. Autism will increase the risk for a disease in that. And so the reason why I'm bringing this up is I think like even how we're taught to interact with patients can be pretty inaccessible for autistic people like for example, we're taught to take a patient, a patient history, right? Like we need to rely on a patient to tell us exactly where it hurts, how it hurts, describe the pain ... something like that, and that can be pretty inaccessible.
And then the second part Is a physical exam. If your patient is uncomfortable with you touching them, you're not going to get any information. So I think that going forward, I think it's just important to be really flexible and be able to pivot how you're doing your exam. If and I'll say this comes back to the believing the patient thing. If they're showing up in your office, that was a tremendous effort and there's something wrong that needs to be taken care of. And so I think that it's like on us to just kinda get creative in terms of communication strategies. I think Hani mentioned like a communication board. And to like kinda get flexible in order to offer the best care we can.
Then the other thing I'll add is autistic adults make up 1% of the United States population right now. So it doesn't matter what field of medicine we're going into, we're going to encounter autistic patients, and neuro divergent patients too. So I think it's pretty important, but, uh, I don't know. I just want to add I did want to emphasize that. I don't know if Hani or Elizabeth have anything to add?
This is a really good point, especially for non-speaking autistics. A lot of people only see those differences. So there are various studies and parent groups that will go down interesting rabbit holes like, "Oh, they have issues with their GI system. That must be what causes the autism" and they never stop and think number one, the kid might just have issues with their GI system that should be treated and when that's treated, they have more energy to handle all of the sensory information and the social stuff, the communicative stuff. So like sometimes when the physical thing gets better, the other stuff gets easier for them too.
The other pieces that we are constantly stressed. It's like when I first started going to therapy, they asked me if I had anxiety. I was like, No, I'm not an anxious person. And it turned out I was constantly living like outside the "window of tolerance" as my therapist would put it, so anxious because of my environment. And I didn't even realize that it could be better. So that level of anxiety is also going to cause like physical health issues long-term. So yeah, that's a really, really important point.
I mean, the other thing to keep in mind is we're more likely to have epilepsy and it's worth knowing certain things about autistic bodies. There are certain conditions were more likely to have, like Ehlers-Danlos syndrome and like epilepsy are two classics. But also there is something that autistics know about and you learn about autistic's spaces that some of my doctors have known and some haven't. And that's that we can have paradoxical reactions to medications. So like I get steroid induced psychosis from a very small amount of Prednisone and I have asthma. So you can imagine how fun that is for my clinicians to try to figure out. But also things like caffeine put some of us to sleep. Psychiatric meds might have the opposite effect. So there's a couple of things here, like there is research, but it's very small, tiny part.
And this is why we get frustrated by all of the mouse studies in genetic studies that aren't turning up results. We're like take those millions and put them into making our lives better. Like the things that actually affects those of us who are alive now. But anyway, yeah, that's, that's definitely something to keep an eye on. The other thing is that I have doctors that I've never told I'm autistic, because one of my first injuries leading to mobility, was a bad ankle sprain and I went for a checkup. My regular doctor was on vacation, so I just saw another clinician in the same practice. And like I was literally just there to check on my ankle, and she spent 15 minutes interrogating me, asking me if I had any friends, if I knew what it meant to have friends, if the people I thought were my friends were really my friends or if they were just being nice to me. I was in tears and I couldn't even like talk to her about my ankle when that 15 minutes were up. So just kind of being aware of those boundaries too.
Thank you. Thank you. So this discussion ... Sorry. I'm just going to pose a question and then turn it over to you, Chris, but I just want to be respectful of everybody's time. I know time is getting short, so I'm going to pose our final question. I'll turn it over, turn it over to you, Chris, and one of the students that just asked,
[49:55] As future doctors, what is one piece of advice that we can take away to combat stigmas towards neurodiverse individuals?
And so Chris, I'll start with you.
Get to know your patient. Really get to know them as who they are as an individual, rather than assuming you know what a neuro diverse individual or a person on the autism spectrum experiences, get to know them. Get to know the families because they have a unique perspective as well. We sometimes run in any of these areas if you're in mental health like I am or medical environment, it's very easy to take a diagnosis and fit that person into that cookie cutter perspective of what that diagnosis means. But within any diagnosis, within any experience with any patient, there is a unique life experience that that person brings to the table and treating people with humanity and realizing that you're dealing with a unique individual. Not just somebody who has autism. Not just somebody who has neurodiversity. But what is the uniqueness of this patient, what is the uniqueness of this family? How can I collaborate and work with them is really, I think, the biggest key that I could say of how to combat this as opposed to these experiences that Elizabeth talked about and Hani, kind of being put in a box and really told who they are and their experience. I think we can do the best we can to combat those kind of feelings that we have or the way that we view autism in a different way. And that's again, looking at the individual and the uniqueness of the patient that we're working with or the family that we're working with.
Thank you. Felicity.
If I understood the question correctly, I think I would offer, you know, as you begin seeing patients that you are aware identify as neurodiverse or autistic. I encourage you for whatever reason you're seeing them in medicine to think about asking them directly, "Are comfortable where you are?" "Is there anything I can do to make this space more comfortable for you?" "Do you want me to turn off the lights so we can talk?" "Is a paper on the table bothering you?" "Do you want to keep your ear buds in?" "You know, I don't care where you look in the room." And sometimes you have to actually argue against their family members who will be constantly prompting them. "Look at her. Look at her." You know what I'm saying? Like I try to talk with the people I care for and their family members would be like, "Come on. Look at her", and I'm like, No, we're good. We're good. Look. Anywhere you want. I don't care because I'm confident that I'm being heard no matter where they're looking.
So I just really encourage if you want to be helpful, sensitive to individuals, just start out by asking how you can make them comfortable in the room. And then like you would do for anyone if you're going to reach out and touch them, tell them first and ask, you know, or explain, "I need to do this, but is it okay with you now?" And almost always its super, super easy. It's not complicated. The people are there because they want your help in an, individual encounter. So usually they're fine or they'll help you do better. So I would just encourage you to ask, and as you do that for people who identify as autistic or neurotypical, you'll become more comfortable with it and it will help you, even with people who don't have that identification to just do better saying how can I make this visit more comfortable for you? What do you need to be able to communicate with me?
Wonderful. Anyone? Catherine?
I would just echo to get to know your patient as a person and let leave all assumptions at the door. Beyond that, just ask them as an individual, not as a representative for neuro divergence as a whole. You'll probably get pretty far.
But one thing I'd add, and this is the controversial one. To do all of these things right? Like to respect their bodily autonomy, and to embrace their neuro divergence, and to be inclusive, we've gotta look at applied behavioral analysis [ABA]. Like, autistic adults are almost uniformly anti ABA because it looks at autism outside of a series of behaviors. It tries to force autistic adults to make eye contact, to socialize with people they're uncomfortable with, to let people touch them when they don't want to be touched, and there is an alarmingly high rate of PTSD and suicidal ideation from survivors of ABA therapy. This is huge, there are alternatives to it. There is a neurodiversity collective. From there ... I'm sorry, therapist neurodiversity collective. There's a great group called "Better ways than ABA," I can send you some of these resources. But honestly, like almost all of us are going to deal with sexual assault. This is something that they don't talk about and a lot of it has to do with the fact that we're actually taught to dissociate from our bodies. And we're taught not to trust our own instincts. So these things can be really damaging. So as a clinician, if, like, if you do anything, go out and investigate possibilities for autistic adults or autistic children besides applied behavioral analysis, that'll save lives honestly.
Expanding on that, ABA world is a huge, huge industry and an actively markets itself and positions itself to sort of scoop parents of autistic children and really heavily markets to parents of autistic children under this narrative of like, we can make your child function like a real child. We can give you your child back from this horrible diagnosis and these kinds of horrific framings.
And as a medical professional, I think that's actually a really important thing to be aware of, that there's this quasi eugenic, active current industry that is likely even marketing toward your parents or if your parents try to pursue resources about autism and how to support autistic children. Very likely they will be finding these kinds of things. And so, as doctors, you're coming into that situation with a lot of weight in their eyes and your ability to be like just so you know, this thing exists. It's a big industry. And like it doesn't work. It actually harms or it will harm your child. Your child will be much worse off growing up. Using your position as the doctor to warn the parent against engaging with these things and steer them toward some of these other options is extremely valuable.
And yeah, we were talking quite a bit before this, sort of worried to what degree we would have to counteract ABA and sort of pushing for these kinds of things. And I've been really glad to hear for us to be the ones who bring it up, as, you know, that it's not a thing being told as a solution available because it isn't. So yeah.
Thank you so much everyone. This has been a wonderful conversation. Dean Learman has joined us for this session as well. Any final thoughts?
Dean Lee Learman
You know, as I've been listening, I really appreciate getting to know people and getting to pass the labels that we're assigned. This is one of those universal things that our students are learning and need to learn is that whatever labels people come with, whether they're visible, invisible, self-identified labels, labels other people put on them. That's a phenomenon of our human brain trying to simplify a complex world. It's how we're wired. So we need to use countermeasures in order to really understand people. And countermeasures come by statements you've all made today. Getting to know the individual, the individual and any group of people, however they're defined.
There's a distribution across that label group. The individual differences are vast. So understanding each person's perspective, meeting them where they are is the key. So it is hard, I think sometimes for our students to remember how should I approach this group of people or that group of people, people with this difference or that difference? Well, at the end of the day, it's the same answer. It's to develop the communication skills to really understand the person and meet them where they are. And this was a wonderful example of helping us get there. So thank you very much.
Thank you, everybody. I know our students have a 10 o'clock they need to get to and I appreciate all of our panelists for joining us today. Thank you so very much. And all of our guests, I appreciate it. Everybody. Have a great day. Thank you.
Panelists and personal descriptions
Dr. Felicity Adams-Vanke, Department of Psychiatry and Behavior Medicine, Carilion Clinic and she is both the section Chief and Fellowship director for the program.
Dr. Elizabeth McLain, VT School of Performing Arts. Her research focuses on Disability Culture and Inclusive Pedagogy. She is an active member of the Accessibility and Accommodations working group and co-chair of the VT Disability Caucus.
Chris Brown, Marriage and Family Therapist and Certified Child Life Specialist with over twenty years of experience working with Couples, Adults, Children, Adolescents, and Families in the areas of education, psychology, and health care.
Catherine Lavallee, M1 student at VTCSOM, sharing personal perspectives on neurodiversity and social awareness.
Hani Awni is a disabled, autistic engineering grad student and the former President of the Graduate Student Assembly at Virginia Tech. His work rethinks the role of engineering practitioners in societal power struggles, building on his past in neuroengineering and software development.