Autism spectrum disorder and the masks we wear [PODCAST]

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This episode is sponsored by Athelas, the number one provider of remote patient monitoring.

“In the ongoing saga of the pandemic, there is the debate whether to wear a mask or not. These are physical masks that temporarily hide our face, but we all wear another type of mask, a metaphorical mask. These are the masks we put on to present who we want the world to see. People who are referred to as having “high functioning autism” often put on the greatest masks of all; masks that society does not allow them to take off. “High functioning autism” is a term used to describe people with autism spectrum disorder (ASD) that have average or above IQ level and good language ability, which currently is about 44 percent of autistic people. As our understanding of autism expands, this number will grow. It is this group that is often left behind in advocating for individuals with ASD. The term “high functioning autism” obfuscates the real struggles that they endure. You may not realize there is a person with autism in your world hiding behind a mask that you could help.”

Lisa Yeh is a psychiatrist.

She shares her story and discusses her KevinMD article, “Autism spectrum disorder and the masks we wear.”

Reflect and earn 1.0 AMA PRA Category 1 CME for this episode.

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Lisa Yeh. She is a psychiatrist, and she wrote the KevinMD article “Autism spectrum disorder and the masks we wear.” Lisa, welcome to the show.

Lisa Yeh: Thank you so much, Kevin. I really appreciate being able to talk about the op-ed that I wrote. Just so people know a little bit about who I am: I am a child and adolescent psychiatrist, and I’ve been working for almost 30 years in this business. I started off in my training with general adult psychiatry over at Harbor-UCLA in California, and I followed up with a child and adolescent psychiatry fellowship, also at Harbor-UCLA. I started off being trained on this thing called the DSM, right? The Diagnostic and Statistical Manual that we all use for psychiatry. It was the DSM-III. So my journey in understanding autism started off with that initial training, and I remember the exact description of someone with autism was that they would rock back and forth and say, “Cheese, cheese.” That’s what I got trained on.

So over the years, not only has the medical community understood more about autism, I have been able to understand a lot more about autism. Part of that journey was that I have been working in academic settings. My first place was Children’s Memorial Hospital, which is now called Lurie’s, and then I moved on to another academic setting called Illinois Masonic. And currently, in 2018, I moved over to Rush University Medical Center. These are all Chicago programs, and everything that I was doing was really in this neurodevelopmental area, seeing patients in many ways.

The biggest thing for me was that the Rush program, where I’m actually the medical director of our autism program, is a lifespan clinic. So instead of just focusing on children, I also see a lot of adults, and my oldest are in their 70s. It’s just this really big span, so I can see how the things that I was doing and promoting as a child psychiatrist really impact later on in adulthood. That’s where I’ve come to be able to understand the real diversity that we’re seeing in our patients, and to understand more about how they develop and what those lifetime needs are going to be for them. That’s what brought me to where I am and why I wrote the article that I did, right? Because it helped with that.

Kevin Pho: Now, before we talk about that article, just walk us through a typical day, and tell me about some of the typical cases that you see and the people that you meet in your clinic.

Lisa Yeh: All right. Like I was saying, it is a lifespan clinic, so I see kids as early as a couple of months old. We do a lot of earlier intervention types of things, where we look at the initial diagnosing. A lot of our kids have these developmental delays, and so I do some psychiatric evaluations for that to make some recommendations. But other kids may come at school age, and there are even a lot of adults that we see who need to be evaluated for whether they have autism or not.

Oftentimes our adults are ones who have had relatively productive lives. They’ve graduated from high school and had some sort of a job, or did secondary education and then got a job. They have relationships, they have significant others, or they’ve gotten married and have children, and they’ve always felt like there’s something off, that there’s something different. Those are the ones who come in later on to try to get that diagnosis. So we do a lot of the evaluations for our older adults who can’t figure out why their life isn’t the way that they anticipated it would be, and why they’re not relating in the way that they see other people they care about relating.

I do a lot of training as well, because it’s really important that we have more doctors who are able to understand how to work with this population. So not only am I working with the autism population and people with neurodevelopmental disabilities, we work on helping with specialty clinics. I did form one for LGBTQ issues, and we’re working on trauma types of things as well, and developing more help with resources and things like that.

The way that we run at Rush is that we have equal branches of clinical, research, and outreach. So it is really my job to try to not only do the diagnosing and help with treatment planning and look at medications and do training, but we’re also trying to do cutting-edge research and help to move it forward, and also provide as many resources as we can to help the community. So it’s really given me a much more complete look at things, where I’m at right now.

Kevin Pho: All right, let’s transition to the KevinMD article that you wrote. It’s titled “Autism spectrum disorder and the masks we wear.” Now, for those of you who get a chance to read your article, can you just walk my audience through it and share the story of why you decided to write it?

Lisa Yeh: Yeah, sure. As I was saying, my concept of what’s going on in the autism world has really developed over the course of time, just from seeing this lifespan type of thing. What this article really was: I was really struck by how much, as a child psychiatrist, we work toward social skills and helping people develop a home and be able to work and live and have friends in the non-autism world. But the impact of that, why I wrote it, and what this article is about, is the struggles of people with autism, in particular the ones that we don’t necessarily recognize easily as having autism. They speak well, they have good, strong cognitive levels, and they’re able to do a lot of things, and sometimes we just don’t recognize that they have autism, and we anticipate and expect them to be like anyone without autism. Even though I’ve been pushing and hoping and helping them to learn these skills, they still have these struggles.

That’s what I call the masks: They try to hide that they have autism, that they are an autistic person, and they try to fit into the non-autistic world. The result of that is that there is still this feeling of not fitting in, that they can’t do what we told them they’re supposed to be able to do. In the end, people who don’t feel like they can connect feel like there’s something wrong with them, and this has caused a lot of depression in the autism world that we are not recognizing.

Part of the reason is the social communication issues that people with autism have. We do see a high amount of depression that they can’t tell us about in the same ways that we would anticipate, saying, “I’m sad,” or, “I have anhedonia,” all of those types of things that we ask about with depression. They can’t always tell us that, and so we miss it, and we make them go through their life thinking that they’re supposed to be in this non-autism world like a non-autistic person, but they’re not. The suicide rate for autism is 2 percent. The general population suicide rate is 0.5 or 0.6. So it’s significantly impacting what they’re doing.

So for my article, what I was talking about is that we need to start recognizing that it’s not just that we’re training people to help them socialize in a non-autistic world. It is really important for us to start to recognize the difficulties that they’re having, and it is important for people who don’t have autism to come to them as well. It’s not good enough for us to just work on people with autism coming to the non-autistic world. It is really important, I think, for people who don’t have autism to start to think about the people they’ve been thinking of, not necessarily knowing that they have autism, and treating them differently, and anticipating that they should be able to understand what we’re saying. That’s really the gist of what I was trying to get to.

Kevin Pho: Can you share a story or a case study of someone with autism but with no overt symptoms, and some of the difficulties they face in connecting with society, that really illustrates your point?

Lisa Yeh: Yeah. Recently I had a person come in who had friends through grade school and high school, and was in college, about to graduate from college and really looking for a job, but they were still struggling. The pandemic caused a lot of anxiety and difficulties, and the communications that were happening through Zoom, or whatever type of video platform was out there, made it a little bit difficult for this person to connect well and to describe things as they used to be able to do. So this person was telling somebody at school just how difficult it was.

Sometimes one of the things that people with autism do is describe things visually, because they can see them in pictures. So instead of saying, “Oh, my professor was just really hard on me and too critical, and it made me feel really bad,” the person described burning and this and that. I mean, it sounded like something almost horrific, but it was to really give a good picture of the depth of feeling that person had, not that they wanted anyone to burn or wanted anything bad to happen to anybody. So it was recommended that they go to therapy, right?

Unfortunately, the clinician was not an autism specialist, and they have to screen for suicidality, homicidality, anything like that. I got a call that they wanted to hospitalize this person, that there were all these kinds of things. So I talked to the person, like, “Well, what happened? Last time I spoke with you, there wasn’t any kind of danger to self, danger to others.” And the person said to me, “Oh, yeah, we were having this great conversation with my new therapist, and then she started to talk and talk and talk, and she said, ‘Blah, blah, blah, hurt, blah, blah, blah, this, blah, blah.’ I have no idea what you said. So I said, ‘OK.'”

The thing is, one of the things that we know about autism is that people with autism are less likely to ask clarifying questions and more likely to pretend they understood something and just agree, and that’s exactly what he did. So instead of the clinician saying, “What do you mean by that? Can you explain that to me? What are those thoughts behind it?” they just said, “Hospital,” right? And that got this person into really big trouble, right?

That’s one of the things: We misunderstand things. We expect that they understand what we’re saying, and with what they’re saying, we assume we understand what they’re actually saying to us. And instead of being helpful, it really was very traumatic, because hospitalization for a lot of people who don’t understand why they’re being hospitalized, or even if they do understand it, can be a traumatic experience. We see that often, with people who lose their jobs because of it, or they lost a relationship, or their significant other is telling them, “Why can’t you respond like I want you to respond?” when they can’t. I think you can see it many times, where I see people just responding to someone who doesn’t quite understand in a very negative way. The immediate reaction is negative, instead of, “Hey, let me figure out what’s going on.”

Kevin Pho: Well, I think part of it is, of course, recognizing the symptoms and signs. One of the things that you mentioned is that people with this proverbial high-functioning autism typically don’t ask clarifying questions. What other signs should we be on the lookout for?

Lisa Yeh: Well, I would have to say that sometimes, when we’re seeing people, we expect them to be able to see the bigger picture of things, that abstract thinking, so that you give them a little bit of information and they’re supposed to be able to expand it. Sometimes that may be a really difficult thing for some people with autism, that ability to fully abstract the way that we think about it. So if someone is not quite getting it, their IQ can be fantastic and they can be really smart, but that ability to problem-solve, that ability to abstract, may be not as well developed. So if you’re seeing someone who’s really not getting it, step back and see why it is that they’re not getting it. Maybe there’s something that is interfering with their ability to get it.

Or sometimes the thing that we see is that they’re avoiding, right? So, sensory issues. I mentioned that in my article: Sensory issues are a really big issue for a lot of people. It could be the lights in the office, it could be the sounds, the noise. Sometimes they’re so sensitive that even when we’re speaking in a normal voice, they feel like we’re yelling at them, and then they seem to get defensive. If they say things like, “Stop yelling at me,” or something, and it’s like, “I’m not doing that,” it may be because they’re really sensitive; they have sensory sensitivities.

Or if you see that they’re just getting too close to you, right? That’s another thing: that they need that kind of connection sometimes with their sensory issues, and they don’t have the appropriate social boundaries. You can think, “I wonder, maybe there’s something going on with that.” Or they are really forceful when they interact with you physically, or things like that. That may be because of the sensory things that are going on. So there are these types of oddities, the bluntness, the sensory types of things, that may give us clues that maybe we’re missing, that that person might have autism. We need to just take a step back and look at those patterns that they’re doing, and maybe it is an issue for them, and we may be able to find a different way to approach it.

Kevin Pho: We’re talking to Lisa Yeh. She’s a psychiatrist, and she wrote the KevinMD article “Autism spectrum disorder and the masks we wear.” Lisa, you mentioned a few of these tips already. So if we recognize that someone that we’re talking to has autism, or high-functioning autism, what are some of the highest-yield things that we can do to improve our interactions with them?

Lisa Yeh: Well, I definitely think it’s making sure that they understand what we’re talking about. If you feel like you’re giving instructions to somebody, or you’re saying something, and they just don’t seem to be getting it, ask those clarifying questions. Say, “Did you understand that? Would it be OK if you just repeated that back to me?” Because if they’re not going to ask that, if they’re not going to check in with you about that, it is a good idea for us to be able to do that.

And sometimes what I’ll do is, if they say, “No, no,” because they might not understand my question when I ask them if they understood it, I’ll sometimes just restate it later on, just to make sure that they’re getting it, and then we check in with them. Sometimes people feel, “Well, I already checked, so why do I have to check again?” There’s a processing to it, and so the rechecking is an OK thing to be able to do. That type of thing, “Just make sure we’re all on the same page; let’s just summarize,” can be really helpful.

If you’re noticing that people are having some sensory issues, like they try to avoid lights, or they think you’re speaking too loudly to them, you can even ask them, “Hey, does this bother you? What can we do?” And you can ask what can be helpful for them, and they may be able to let you know about that. That recognition that they may be having a sensory issue can really go a long way toward people being able to feel more accepted, and it’s OK. I mean, I think that’s really one of the things: that they feel OK, that their symptoms can be accepted, right? Because there are a lot of things we try to do to help with sensory issues, or to help with these things, but they’re not 100 percent working. So they’re still going to have some amount of difficulty with those types of things.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Lisa Yeh: Well, first of all, I’d like to just say that I’m not a fan of the high-functioning autism terminology, right? Because I do have people with low cognitive abilities who have a little job of sorting or something, and they’re super happy. They’re functioning the way that they want to function, right? So it doesn’t quite tell us anything about the person when we call them high-functioning. And I do have a lot of patients who have told me that it feels dismissive to them of their struggle. So first of all, I would like to say, let’s try to avoid that type of thing and look at the person individually, at where they are and the needs that they have.

And then the other part is to just start to be more aware. I think for someone like me, who sees autism all day long, every day, it’s easier for me to pick things out and wonder about whether someone has autism or not. But I think for people who don’t do that, when we’re starting to struggle with somebody, maybe take a step back and just see: What are those things? Is it a social communication part? Is it something that might be potentially sensory? Taking that step back may help us feel like we can work with them, or have a relationship work, and that goes a long way, I think, in helping out their world, so that they feel that they’re more accepted, that they don’t always have to be behind that mask, which is what I was talking about. And I think it’s just good for us in any way to take a step back sometimes, when we’re having difficulties with someone, and just rethink our approach and how we’re interacting.

Kevin Pho: Lisa, thank you so much for sharing your time and insight, and thanks again for being on the show.

Lisa Yeh: Thank you so much for having me. It was a pleasure to be able to meet you.

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