The TSCC and TSCYC screening forms allow you to quickly screen children for symptoms of trauma. Both forms are now available through PARiConnect-PAR’s online assessment platform. Learn more at parinc.com.
Hey, y’all. Welcome back to another episode of the podcast. Hey, we’re talking today about the identification and assessment of adult autism. This is a topic that has come up certainly in other episodes, but we’ve never really done a deep dive into adult autism. So I feel really lucky to have my guests today. Dr. Theresa Regan.
Let me tell you a little bit about her. She’s been practicing as an adult neuropsychologist for over 20 years in a large medical center in Illinois. She is the mother of a teen on the autism spectrum, certified autism specialist through the IBCCES, and founder/director of an autism diagnostic clinic for adolescents, adults, and geriatrics. She has published two books on autism in adults, hosts a podcast, and offers training materials and consultation services through her website.
She has a number of resources on her website. Theresa was kind enough to put together a little promo that I want to make sure and mention here.
If you use the promo code testing psychologist, all lowercase, you’ll get 20% off any of her courses for diagnosing autism in adults on her website. So again, promo code testing psychologist for 20% off any courses on her [00:02:00] website.
We cover a lot of ground in this episode. We touch on lots of things. We talk about why it’s important in general, to just have autism as a differential diagnosis on our radars. We moved to how we can actually screen for autism in adults and Theresa gave some specific questions and ways that she does that during the interview that I think was super informative. She talks through her preferred battery for assessing autism in adults. And we also touch on the topic of self-identification in adults with autism and how that fits into the clinical picture and the pros and cons of self-identification.
Before I transition to this incredibly engaging conversation, I want to mention again, the Mastermind groups through The Testing Psychologist. [00:03:00] We’ve got a beginner practice group and advanced practice group and an intermediate group all enrolling for the next cohort. These are group coaching experiences matched to your level of practice development with the intent of connecting you with other practice owners, giving you some accountability, and just helping you reach some of those practice goals in your testing practice.
So if those are interesting to you, you can get more info at thetestingpsychologist.com/advanced or thetestingpsychologists.com/beginner and or thetestingpsychologists.com/intermediate. So check those out if you would like, and you can schedule a pre-group phone call to talk to me and see if it’s a good fit.
All right. Without further delay, here’s my conversation with Dr. Theresa Regan.[00:04:00] Hey, Theresa, welcome to the podcast.
Dr. Regan: Thanks, Jeremy. I’m so glad to be here.
Dr. Sharp: Well, I’m glad to have you. I’m very excited to talk with you. This is a topic that has been touched on in the past, on the show, but we’ve never really done a deep dive into adult autism and everything that entails. So, I’m thrilled to have you here. I know that you’ve been doing this work for a long time and think pretty deeply about this area. Grateful to have you.
Dr. Regan: Yeah, it’s become a big part of my practice now.
Dr. Sharp: Sure. Well, I know we have a lot to get into, but I always like to start off and just ask folks, of all the things you could do in this world of psychology or neuropsychology, why are you focusing your time and energy on this?
Dr. Regan: Well, I always say I came into the adult autism [00:05:00] piece from the back door, which has been good, as far as my experience. So I never predicted that this is where my practice would go, but I’ve been working in a medical setting as a neuropsychologist for 22 years, and I see teens and adults in geriatrics, and I’ve really done lots of things in this medical context. And it wasn’t until my husband and I had our son that I kind of was versed unexpectedly in the world of autism.
He was diagnosed at the age of 5 but a lot of things happened before that. And what I realized was that as I’m seeing patients in the hospital setting, all of a sudden, I would think, I know what this is, this is autism and it’s not diagnosed. And I realized how huge it [00:06:00] was for patient outcomes for clients’ conceptualization of themselves for the medical issues that we’re seeing in our setting. So it became very real on a personal level and then very real on that clinical side of things. And so I really devoted a lot of focus to that. And that’s what I’m doing for my practice now.
Dr. Sharp: It sounds like the experience that a lot of us have to some degree or another, there’s a personal component that plays a huge role. I know for myself, I got a lot more interested in pediatric assessment once I had kids of my own, even though I was interested before that. I got really interested after that.
Dr. Regan: Yeah.
Dr. Sharp: Yeah, I hear you. It’s an interesting way to come into it. Like you said, through the back door, to see it in your son and then recognize it in your patients in the hospital, [00:07:00] we don’t hear that a lot. I don’t think, especially with adults and older adults, which sounds like…
Dr. Regan: I know. I think having that day-to-day knowledge because I had book knowledge before, right? I had been to a few conferences on it. I had read some books on it, but to live it on an everyday basis and go through the diagnostic process and the therapeutic process and advocating for your kid, gives you a feel for a thing that is just different than book knowledge. And that really translated.
There were a few things that were pivotal. One, I remember working with a woman in her 50s and I was doing a headache assessment. And she said, “I’m here with my 2 kids [00:08:00] and my daughter’s 3 kids and they’re going to wait somewhere else for me because they need a quiet space because they’re on the autism spectrum.” That cued made a think, I should really dive into whether she has qualities as well.
And I always ask people on the spectrum, “What do you eat?” When I asked her what she would eat, she said white mashed potatoes. And there was this pause as I waited for her to continue. And no, that was it. And she was being treated for diabetes and other things. And this is a huge missing piece, not only in her social life but in her medical care. And it just blew me away that the team wasn’t aware that there were all these texture issues for her.
So it just became so meaningful. And when you advocate for your [00:09:00] kid, you want to advocate for everybody who’s been messed and is kind of searching for some answers for themselves.
Dr. Sharp: I love the way that you say that. When you advocate for your kid, you want to advocate for everyone. That’s a really cool sentiment to be able to spread that or pay it forward. I’m not sure what the phrase is exactly but spread that advocacy as far as you can.
Dr. Regan: Yeah. I know what it feels like to be a family member too. And so I can connect with that piece of things whereas if I were just assessing from an academic point of view, I may not have that ability to connect with a larger family unit.
Dr. Sharp: Of course. Well, we have a lot to talk about, I think. [00:10:00] I’m so excited to pick your brain about how you approach adults on the spectrum or autistic adults. Let’s see. Could start with just this idea that, when we spoke ahead of time before the recording, how you are just such a big proponent of almost always having autism as part of the differential diagnosis picture and always being on the lookout for that. I wonder if we might be able to start there?
Dr. Regan: Yeah. One of my messages to clinicians is not that everyone has to assess for autism because that is a very specialized clinical practice, but one of the things that strikes me as that almost inevitably, autism has never been on the differential. It’s not that it’s been assessed and [00:11:00] ruled out, it’s just never been considered. I think there are various reasons for that, but I’d love to give your listeners some reasons why it’s super important to have that in the differential.
I have four reasons here I just wanted to share.
1) And one is that it really makes a difference to know whether something has a neurologic or what we have a more traditional call, a mental health-based. I know those get obscured at times, but I’m going to take an example outside of autism just to illustrate. So if we have a client that comes and has memory concerns and we’re doing an assessment. If we find out that their memory concerns are due to Alzheimer’s, we’re going to have a different conceptualization about how we can serve them and their family.[00:12:00] Then if the memory issue is secondary to dissociation from trauma, we’re going to have different goals. We’re going to have different therapeutic things we might do with that. And the same will be for any mental health condition, that if the behaviors that we’re seeing have this neurologic base, that’s important to know because it’s going to adjust what you expect to happen. It’s going to adjust what techniques might be more or less helpful. And of course, Alzheimer’s is degenerative and autism isn’t, but you can still see that it’s important to know if there’s this physiologic anatomic piece just as the starting point for your intervention with someone.
Dr. Sharp: Sorry, I’m going to jump in right away. Sorry, I’ll interrupt a little bit more than I would in real [00:13:00] life here, so I can ask some questions that people might be interested in. But just to clarify, this is a very naive clarification, but I want to make sure I am on the same page with you that you’re saying autism is a neurological condition versus a mental health condition?
Dr. Regan: Absolutely.
Dr. Sharp: Okay. Just making that super clear for anybody who might be…
Dr. Regan: Yeah. So autism is a neurologic condition that impacts behavioral patterns and emotional regulation and different things like that. And so it is important whether you’re a medical professional or a mental health professional or a family to understand whether there’s a neurologic base. And the base doesn’t mean that nothing can be improved. It means that we would use certain techniques to get the best outcome, but also that you’re not going to do talk therapy with someone [00:14:00] and then see a neuro-typical individual that they’re wired in a certain way, and we should help them understand how they’re wired. We should come alongside them to support their needs and to learn how to communicate their needs.
And so, that’s kind of a different approach as opposed to, you know, I’ve had some clients that were in marital therapy, for example. You tell the person the same thing over and over, and they can say, “Yeah, I totally get that on an intellectual level, but the behavioral pattern just doesn’t shift.” And so that’s one of the things to consider if you do have a neurologic base that there might be a certain way that this person is wired. We could increase their comprehension of that. We could increase their communication about that.
We could increase some of their skills and strategies for [00:15:00] connecting, but we’re not going to have a goal that they’re going to be neuro-typical or they’re going to be rewired to love the sensory experience and to love crowds and all these things that maybe they’re not wired to really dive into it and to understand what their gifts are. These are the things that you just have such a great command of, and these are the areas that you struggle. And that’s what we do for clients in general. But if there’s a neurologic piece, we should be able to determine that and articulate that.
Dr. Sharp: Yeah, I’m right with you. So tell me some of the… You’ve touched a little bit on the downsides of not recognizing that but are there [00:16:00] other cases that you can think of or ways that we may be doing harm to a client by attributing these behaviors or presentation to mental health?
Dr. Regan: Totally. I think that one of the biggest areas of harm is that if there isn’t the behavior shift we expect, we really rely on educating them about why their behavior should change. We rely on consequences and incentives and overtime when that isn’t as successful as we would like, there is this cycle and whether it’s between a couple or a parent and a child, this cycle of shame and helplessness, and on both sides, the [00:17:00] family is like, “Don’t you love me enough to communicate better?” Or the person is like, “I’m doing the best that I can do. And I just don’t know how to, to shift that.”
Some people would say, well, why is it important if it’s a neurologic base and we’re not going to completely rearrange that? It’s really important for their understanding of what makes them tick. Like, am I someone that’s that I’m inadequate and I’m not bringing what people need from me, or am I someone that’s wired in a particular way? And I could describe that and I could use my gifts. I could compensate for personal things. The understanding is huge.
I had a couple in their 60s that I happened to interact with within the hospital. He was a [00:18:00] hospitalized patient and she was there and I was asked to see them for something completely different. But I could see that his neurologic base was autistic and that it was interfering with his medical care and his doctors were confused and his wife was frustrated and she said, “He’s always been this way. And that it’s really frustrating that it’s hurting his health now.”
I was able to talk with her about that conceptualization, and three years later, she wrote me a note and said, “That was the most impactful doctor’s appointment I have ever had.” And it was just a chance that I happened to interact with them. But having that true conceptualization means a lot to people because we’re always asking what does this behavior mean, right? [00:19:00] What does it mean about them? About me? What does it mean about my parenting? What does it mean about their regard for me? And so to know what a behavior pattern means is really important.
And then in the medical setting, there’s just a lot of medical ramifications. I’ve worked really closely with the dementia clinic because we see patients come in in their 60s, 70s, 80s, 50s, and these behaviors are baseline autistic behaviors and they haven’t been diagnosed and they’re at risk because they haven’t been correctly diagnosed for misdiagnosis, whether that’s dementia, I’ve had people undergo ECT because it was presumed that they had such a bad depression.
We want to [00:20:00] avoid treatments and conceptualizations that aren’t accurate and we want to empower people to understand how they’re wired and how it’s a better outcome and improve their wellbeing.
Dr. Sharp: Sure. Well, I know that we are trying to tackle for reasons that we need to be considering autism and we’ve only talked about one, so let’s go for it What else have you got? Why should we be thinking about this?
Dr. Regan: Well, actually avoiding incorrect diagnosis was one of them. Another one is that there are usually three needs for intervention on the spectrum. One is the regulation of attention, alertness, and emotions. And for that, I really love to use sensory strategies. And so I wouldn’t think to do that if I didn’t know this was a person on the spectrum who could use these strategies to regulate their [00:21:00] neurology. And we’re not going to go into that, but it’s just an illustration that the intervention you use should be impacted by the knowledge of the correct diagnosis.
And then another area for intervention is social and relational. And again, just having that correct conceptualization of why is this behavior happening? And the third area for interventions that a lot of people need help with is this difficulty with adaptive behavior. So individuals on the spectrum often have higher intellect than they do everyday independent behavior, whether that’s holding a job or self-care, and understanding the neurologic conceptualization and diagnosis will help us gear our interventions toward these three areas and also use [00:22:00] neurologically helpful strategies like the sensory ones.
And then I would just say the fourth thing I would mention is that the largest genomic study about autism risk in this last year estimates that at least 80% of the risk is genetic. And so if you’re working with people who have behavioral patterns in a family unit, having that awareness that they may share some neurologic qualities can be helpful to the outcome.
Dr. Sharp: Sure. I appreciate you diving into that. And I think there are many reasons that we should be considering autism, at least as a differential, at least to have it on the radar. I don’t know if you’ve experienced this, but I found in our practice that there are many cases where unless someone is coming with the question of, do I have autism, it’s easy for [00:23:00] practitioners to miss it, right?
Dr. Regan: Yes.
Dr. Sharp: I’m totally on board with you in adding autism as just another area to screen for or look for in those initial interviews.
Dr. Regan: Yeah. A lot of the people who come in and are undiagnosed won’t come requesting that particular assessment.
Dr. Sharp: Right. So I should have mentioned this earlier before we totally launched into everything, but it’s never too late. Right. So, dispelling this idea that autism only happens in kids or does not persist to adulthood, that sort of thing. I mean, I think we’re seeing a big upsurge in diagnosis in adults, especially older adults, at least that’s what we’re seeing. So folks over, let’s say 50. I’m not sure. How does that match with your experience?
Dr. Regan: Yeah, the research is really confirming that the rate of [00:24:00] in the population is about 2% and that’s across age group. What differs across age groups isn’t the presence of autism at that rate, but it’s whether someone is diagnosed. Still, the latest data on 8-year-olds that the CDC published last year is that we’re missing 1 in 4 in the United States. And lots of estimates about adults would estimate that we’re missing up to 90% of adults because it just wasn’t on the DSM radar until the 80s and it really just hasn’t been on our radar either as adult professionals, right?
It wasn’t on mine until I really had that personal day-to-day experience. So most of the adults on the spectrum certainly are undiagnosed or misdiagnosed with mental health conditions.
Dr. Sharp: Yeah. Can you speak just for [00:25:00] a second about… I don’t know if you call it anecdotally or if you do have research around this, how would I phrase this? …sort of the recognition of autism in adults, in hospital settings, or in medical settings especially among neuropsychologists? I could see that being a little bit of like a Bermuda Triangle where it just sort of gets lost, but I could be totally off base.
Dr. Regan: I think it gets lost in our culture in general. I had a dementia referral years ago. This is when that aha moment was going on for me. It was an adult female in her 70s probably. And then the assessment was completely clean, but she did have an unusual behavioral profile and I thought autism should be in the differential. And I called the physician who referred and [00:26:00] just said, Hey, I’m wondering if we should include that in the differential. And he said, “Well, I don’t care about that. I’m not a pediatric physician.”
And I just had to pause and say, that’s really our thought process a lot of times.
1) You don’t see that in adults.
2) You expect that if an adult is on the spectrum, they’re already diagnosed.
3) You think it’s easy to say, well, that’s not my area, so I don’t do that.
But the 2% in the general population, when you talk about a medical setting or a mental health setting, it’s going to be significantly higher. And how high? I don’t think we know because we’re not catching the diagnosis, but I know Kaiser did a study and they looked at all their medical records and I think it was 0.0, 1% had autism there for adults. And that’s significantly [00:27:00] lower than the 2% that you would expect. So certainly, I think, medical settings are, and I think we can do better in schools. We can do better in mental health settings.
So hopefully having it in the differential is one step toward that culture shift where we think about it and adults, and we know that it’s important and impactful. And we know when to send somebody on for an assessment.
Dr. Sharp: Sure. I think that’s a great segue then to talk about how we can do better in these initial interviews or screenings. It sounds like you have some thoughts on things we need to look out for or ways that we can be more mindful of autism.
Dr. Regan: Yeah, I’ve been doing diagnostic assessments now for adolescents, adults, and aging adults for so long that I just have questions that really [00:28:00] give you a lot and aren’t particularly specialized, but it really helps. So I thought I’d share some of those. What I always do with the client is I ask who they’re closest with in their life. And I have them pick about three people usually, and I’d like one to be a peer and at least one to be family, so that can cross over. Even with that question in itself, you might get some good information.
One time a gentleman said, “Well, probably closest to my mother, although she’s dead now.” So you can sometimes get some quotes that help you and you say, well, okay, that’s good information that he conceptualizes his closeness like that. Another thing that that leads to is the ability to say, why are you close with this person? And sometimes the [00:29:00] individual on the spectrum will respond about proximity. So physical proximity. Well, they live next door or I live with them. They’re in my class. But they don’t really have a connection or an awareness of this person’s internal life as somebody outside of themselves. Like they have this whole world, this whole life outside of you, but they don’t really have that conceptualization.
I ask them what emotions these people have had recently, or when they were interacting with them. And that’s good too because you get, again, tapping into this awareness of the internal experience of another person. And some people will say things like… and I’m thinking of a woman who was extremely brilliant, very kind, really no behavior problems, but I said, [00:30:00] “What emotions has your mom had recently?” And she said something like, “Well, probably all of them. I’m sure she has some, but I’m not really sure what they are.”
Then this leads to this question of, well, how could you tell what someone’s emotions are if they don’t use the word for you? And that can lead just into a good discussion. Like how do they detect that?
I also ask what the person’s interested in that the client’s not interested in. Again, a lot of times I see them connecting on their special interests, but lack awareness that this is a whole person and they enjoy things you don’t enjoy too, and what are those?
I also like to ask how other people would describe them. That can be a really helpful question. And sometimes I’ll get things like [00:31:00] I have no idea. You’d have to ask them. I literally have no idea how other people would describe me. I’d never asked them. Or you’ll get things like, they probably say nice or smart or you’ll get a physical characteristic, like tall. How do they describe you as a person? Sometimes there’s a little categorical thing they’ll say, like nice.
And then I will ask, well, how does person A how might they describe you differently than person B? So let’s say, they talked about mom and a peer that they were close to just with in their life. And how might they describe you differently? And it’s often difficult for people to realize that others might view them differently not because they’re different, but [00:32:00] the other person they’re interacting with is different. I know this person across a different context than I know my mother, and they might view me differently because of that. And this is how they might do that. So having them say differences can be helpful as well.
Dr. Sharp: I like that question. How would those two individuals describe you differently?
Dr. Regan: Yeah, because they’ll be able to tell you pretty well how they would describe them the same, but really get on that difference part.
Dr. Sharp: Sure.
Dr. Regan: So those are some questions that are really helpful. I would say another super helpful thing that I’ve really begun to focus on is the difference between someone’s narrative about their life and the actual behavioral data. So a client or collateral is going to give you their interpretation, their conclusion [00:33:00] about the behavior, but you want to know that that’s their conclusion, but you really need the data. And so what I would suggest is that when someone says something that’s a narrative like if they say my daughter’s really controlling, that’s their narrative. And don’t take that as data. That’s not data.
So then say, what does controlling look like in your daughter? Give me some examples of controlling. One mother said, well, she insists on loading the dishwasher in a particular order, and with all this symmetry and certain spacing and she makes everyone else in the house do it too. Well, that’s good behavioral data because that’s different than saying someone wants to control me as a person. They want to control their environment. And that may fit into this lining up of objects criteria or this inflexibility [00:34:00] criteria that we have in autism.
If somebody says, oh, she’s so social, well, I want to know what social means. So it’s different to say someone’s social because they’re great at relationships versus they’re so social because they talk and talk and talk for forever and they go up to indiscriminate people and talk to them and they don’t know when to stop. Well, that kind of social is not good, right? That’s part of the thing we’re looking at. Can somebody take turns in a conversation? Can they match the conversation to the listener and understand what the listener needs? So those kinds of distinctions between narrative and actual data, I would really focus on that quite a bit.
One of the things that’s very helpful too, in adults, let’s say you don’t have a parent to get that developmental history, what [00:35:00] I find helpful is asking them, what were your parents’ stories about you? They often know that and a spouse often knows, or a sibling knows. So, all the stories they kept telling where this one time, blah, blah, blah.
So for example, a couple that I was working with said, one of his mom’s stories was that every night before he went to bed when he was like 2, 3, 4, he’d be on his hands and knees on the mattress and he’d rock back and forth and he’d hit his head, bang his head on the headboard. And they took a photo of the headboard and the whole finish was worn off because of all the times that he would rock in bang before he could regulate himself to sleep. Well, that’s a good headbanging example. And those kinds of things often are tales [00:36:00] that parents will say, oh, this kid did this or that all the time. And that can kind of give you a sense of what their regulation was like and their interaction.
Another thing I would say is it’s really important to know that someone’s intellectual knowledge does not always hang with their ability to pull something in actual life. So a lot of people on the spectrum are really good at memorizing information. So if you tell them the rules, the expectations, what they should do, they can recite that pretty well. But what they have difficulty in doing is pulling that off and actual day-to-day living.
And so lots of people can say, well, if I’m here having difficulty in a relationship because I did something wrong, I should say, sorry or I should be nice. To make a [00:37:00] friend, I should be nice. So then again, you can get into this, well, tell me about a time you did that. So give me this example. So knowing that their intellectual knowledge in their behavioral patterns probably don’t line up, they really probably have a disconnect. So I’d like to hear them actually explain. And a lot of times people will say, well, I’m not sure I’ve ever done that, but that’s what you should do. So, those are kind of good things to keep in mind for the interview. And then I have some…
Dr. Sharp: Can I jump in and ask a quick question, or it may not be a quick question. We’ll see where we go with this. But I find it really difficult. Sometimes we work with a number of agencies around here that provide adaptive services for folks, both kids and adults and whatnot. And we run into this question a lot where we’ll do an evaluation with an adult and their [00:38:00] IQ is off the charts. Maybe there’s some variability, but they certainly aren’t falling below the intellectual disability cut-off, but their adaptive scores are very, very low.
And I find I have to fight hard many times to reconcile that for these agencies that provide services. So I wonder for you, do you have thoughts or even ways that you might try to make that case to explain to folks why the IQ can be so high, but the adaptive can be so low sometimes?
Dr. Regan: That’s pretty well established as consistent with the diagnosis that the research shows that, that the DSM says that that, that intellect is often quite a bit higher because autism is a neurologic condition of behavioral patterns and you can be brilliant [00:39:00] but have this neurologic wiring that does make the day-to-day living really difficult.
What I do in my reports is I list a bunch of research about adults missing a diagnosis because I also get pushback from agencies about, well, if they had it, it would be diagnosed already. I list things from the DSM in my report that explain why assessment and adulthood is important and also from the CDC made a statement about that last year as well. And then I will talk about this difference between intellect and knowing something and pulling it off because I see that impact schools too, like the schools will say, oh, he knows that he can’t get up during class, but [00:40:00] he does it anyway. And therefore it’s not a knowledge deficit. It’s that he’s noncompliant.
Well, for example, this is a kid that asked seven times if he could straighten the pencil holder to be symmetric on the teacher’s desk with something else. And she said, no, and eventually, he didn’t melt down, he got up, he made it symmetric and he sat down. So there has to be this greater understanding in the culture that our understanding that intellect can affect daily living started in the 1800s. And so we have lots of laws and things that are now wrapped around that, but we’re so far behind it understanding that the brain wiring impacts behavioral patterns.
We understand that for post-concussion or post-traumatic brain injury, we understand that for [00:41:00] dementia, but on a developmental level, we’re just not really getting that people can present with behavior patterns that are neurologically based. So I just really write out all my arguments, all the research that I combined, just the information that I see missing. So a lot of my recommendation sections is educating the person reading the report.
Dr. Sharp: I can get it. Yeah, I see that. Yeah, that makes sense to me.
I know we’re going to talk about a battery, which I’m excited about, but are there other things that we should be on the lookout for or hidden questions that we might ask that might help us identify potential autism?
Dr. Regan: Yeah, there’s lots. We don’t have time to go into everything, but I guess the last [00:42:00] general thing I would say is that a lot of people come in with multiple mental health diagnoses that are actually tapping into one little piece of autism. And if you look at all the diagnoses together, well, that is autism, you know?
So you might have someone with social anxiety and OCD and eating disorder and anxiety and you just get this whole list and you can say, well, I hope somebody ruled out autism because that sounds like inflexibility, ritualistic behavior, difficulty with social interaction. And so you will see that that’s a flag for me. Like if I have seven diagnoses on there and they all kind of tap into autistic qualities, then that’s a flag that I should delve more into that.
Dr. Sharp: Well said, [00:43:00] especially seeing an adult with the alphabet soup of diagnosis, that’s an immediate, like really, really, can it really be all these things?
Cool. And yeah, I know there’s so much we could go into as far as associated features and diagnoses and comorbidities and all of that. It’s just a lot, but maybe this will be a little teaser. Do you want to move to the battery and what you’re actually doing?
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All right, let’s get back to the podcast.
Dr. Regan: Yeah. The basis of my approach is to gather information from multiple sources. As a neuropsychologist, I’m used to that where I want to gather a [00:45:00] bunch of data. I want to see what pattern the data falls into. If there are repetitive themes. And whether you look at a questionnaire, instructions, or instructions for a diagnostic interview or instructions from the DSM, they’ll all really emphasize that you have to use multiple sources of information to make this conclusion. So I would never make the diagnosis on the basis of one cutoff score. It really has to be this pattern that has evolved from multiple sources.
I spend about an hour and a half with the client to do the interview and to do those kinds of questions we reviewed. I do some role-playing with them. I also will meet them with the collateral. Go ahead.
Dr. Sharp: Yeah. I was just going to ask about role-playing. What does that look like?
Dr. Regan: I found different things interesting, so I’ll ask them [00:46:00] to pretend that we’re at a Christmas potluck at the snack table. They’ll go ahead and start a conversation with me. So I look for back and forth. I look for reciprocity, in the same way, they went with the kids’ diagnoses. So if they say, oh, I can’t wait to get my Christmas gift. It’s a PS4 and I might say, it sounds like you like video games. I really like reading. And then kind of see if they pick up that reciprocal exchange.
Some people know, you know, they can be polite and kind of say, oh, that’s nice. Other people will say and like, “Uh-Huh. And there’ll be this pause. Like I’m not really sure. Or they’ll say, yeah, I’m hoping to get this video game with my console or something like [00:47:00] that or where they’re not really exchanging. So, I do that conversational thing.
I also ask and I find this really helpful. So I will demonstrate a shift in my prosody. So I might say something like, “Well, that was fun” and see if they can tell me how the meaning changes. And then I ask them to shift their prosody for me. So I asked them to say, “You did a good job with that.” And then after they do that, I ask them to say it sarcastically.
I also ask them to show me emotions in their face. Show me what afraid looks like, show me an afraid face. And I really feel like in some of these folks, there’s almost like facial expression apraxia where they just don’t… [00:48:00] there’s like this disconnect where well, I know it in my head, but I can’t produce that. I look for that because you will find people who are kind of like with aphasia, how someone might have better comprehension and expression and vice versa. I do find that in autism where someone might have a pretty good range of expression, but their comprehension is really poor or vice versa. So I try to do comprehension and expression. So I try to get all things in real life, examples too, like from the collateral from the client, but I do add some role play to get some data.
I will meet with the collateral separately, and I do an interview kind of teasing apart the narrative from the behavioral data. I get a developmental history. [00:49:00] I know that any questionnaire I use, any diagnostic interview that I use is always supposed to lead me back to the criteria. So I have the criteria in front of me and I gather data multiple ways, and I try to see what pattern evolves and how it matches the criteria.
So I’m always going back to the actual criteria and these things are ways that I get a lot of data that I can sort through and look for a pattern with. I do like the social responsiveness scale, but there’s a lot of good questionnaires that you can use again, to gather that data. I use some sensory questionnaires…
Dr. Sharp: Can I back up real quick, Theresa?
Dr. Regan: Yeah.
Dr. Sharp: With the other questionnaires before we move on to the sensory realm, are there any other sort of [00:50:00] narrow-band autism questionnaires that you like for adults aside from the SRS? We love the SRS and use it a lot, but is there anything else out there that you…
Dr. Regan: I don’t have another questionnaire. I would say that I work with a team of neuropsychologists and I’m the only one that does the full assessment, but the team has gotten really good at noticing the flags. And I would say where we get, most of our flags are in the interview. Really that behavioral data is important. And even when you’re interpreting the questionnaire, it’s important to see how it matches that hero data, because someone may or may not be a good historian on the questionnaire, but they may give good examples in data.
So I actually don’t have any. I’m not married to one questionnaire probably because I don’t use… I look [00:51:00] at the cutoff scores, certainly but I find the questionnaires to be avenues. Like I’m going to try some role play. I’m going to get behavioral data. I’m going to get questionnaire stuff. I’m going to look through IEPs or medical records. So I’m using these multiple sources to see a pattern. I see all the questionnaires as having some limitations, but I do like the SRS.
Dr. Sharp: Sure. So you were talking about the sensory element as well.
Dr. Regan: Yeah, kind of the same thing with the sensory questionnaires. I’ve used the adolescent adult sensory profile, and I’ve also used the sensory processing measure too. And I only use one for each client. And again, I’m just aware of their helpfulness and their limitations. So, I haven’t found [00:52:00] any questionnaire that’s going to really do a good job with all 8 sensory spheres that we need to assess. So that’s the five that we usually think of as well as the movement which is vestibular, body awareness which is proprioception, and interoception which is the awareness of what’s going on in the body.
So there are limitations to that. The adolescent adult sensory profile gives you four general scores for sensory avoidance, sensitivity, low registration, sensory seeking. One of the problems is, a lot of times people on the spectrum will have high sensitivity in one sense, but have low registration in another. And if you’re averaging across sentences, you still may miss that if they even themselves out, if that makes sense, like you’re getting an average across senses. So I try to be aware of that limitation there.
The [00:53:00] sensory processing measure is fine. It does give you a score for different senses, but at the same time, you’ve got five questions or something per sense. And so, it’s not going to ask every way that that could be established. We’re also trying to look at unusual fascination with certain senses, which I don’t find that any of the questionnaires really delve into the fascination part.
Again, as long as you know it’s a tool to direct you back to looking for these patterns that match the criteria. So I think they’re useful tools. I always use an element of questionnaires to balance out the other information that I have gotten. I use a measure of adaptive behavior usually [00:54:00] especially if the person is needing community services or if they’re a teenager or young adult that’s really falling behind their peers in that area, I’ll try to measure that out.
Again, I don’t have a favorite. I use Vineland sometimes. I use the Independent Living Skills sometimes for people that are a little lower on money awareness and things like that. A lot of the adaptive behavior stuff comes out in the interview as well.
I do find one flag for me is that a lot of my patients on the spectrum don’t drive. And I would say that’s more for young adults. So I did look in my clinic this year, that my patients from 16 to 20 that had average to very superior IQs, [00:55:00] 80% of those patients weren’t driving or would only drive one place. They were very driving avoidant. I see that as part of the sensory processing and some of the rigidity or inflexibility piece that makes driving difficult. You have all this fast-changing information coming at you. So, that can be a flag too as far as their adaptive behavior.
So that’s my general approach. I try to gather as much information from as many sources and then go back to the criteria.
Dr. Sharp: Cool. I have two questions with that. The first one is just two areas that we didn’t touch on or maybe we’re not part of that is:
1. Cognitive. Do you care about cognition? And if so, what do you do?
2. One of those standardized interview methods or measures [00:56:00] like the ADOS or the MIGDAS or anything like that?
Dr. Regan: I’ll start with the second question. I don’t use that for adults. I don’t find it as enough behavioral data for me to do it that way. I try to take concepts from the ADOS. We’re looking at reciprocity. But I really find that for adults, for geriatrics, I don’t get enough age-appropriate information I think with that measure in particular.
For cognitive, I do find it very interesting to see the cognitive data. And I don’t always do that. I tend to do it with… I do cognitive data with all students. So all high school and college students [00:57:00] for my age group. If there is a flag for a cognitive issue during the interview, like if they say, oh…. if there’s a flag for possible dysgraphia or some developmental thing that can hang with some problems in everyday life, I might go after that if they describe cognitive concerns.
And also, as I said, a lot of people that come into our neuro-psychology clinic for cognitive concerns, that they’ve identified or for dementia evaluation, we end up liking that. So we will do that dementia evaluation. And what’s really interesting to me is that in our whole clinic has just commented on this, that you really are apt to see an uneven cognitive profile, not a specific profile [00:58:00] necessarily, but this unevenness and what may be specific is sometimes you’ll see that the processing speed index and the working memory index might be lower than the first two for the WAIS.
But across cognitive level, you’re likely to see unevenness. You’re likely to see executive function difficulty, although that’s sometimes difficult to capture in the office environment. I don’t usually see the Wisconsin Cards being a problem. I don’t usually see […] being a problem. So I’ve stopped giving those. I will often give the CBT or T.O.V.A.or something for reaction time and visual attention.
I will give the WAIS. I’ll give memory, like the CBLT compared to logical memory. Sometimes I see a big [00:59:00] split in those areas where executive function may reduce the CBLT or for other patients, it seems like the story doesn’t land anywhere. Like it’s a story about people, and this happened to them and their rope memory for facts might be super. So I like to know what their brain processes. Whether there’s a difference in verbal and spatial memory.
One of the things that we’ve remarked on so often is that, so, let’s say I do a cognitive evaluation with a 42-year-old. We will look at that and say, if I saw this in a 65-year-old, I would say, this looks like dementia. Like there is a surprising unevenness [01:00:00] that a 30 point split or a really, really problematic ray or street drawing that you kind of assume there’s going to be this homogeneity to someone’s profile. And although intellectually you know that developmentally there might be some unevenness, it really drives it home when you see these profiles for people with developmental issues.
As an adult neuropsychologist, I never realized how impactful that can be to have that uneven profile. So we just often say, oh my goodness. Look at this disparity. I did not predict that. So a lot of times I do find it helpful. And then I can comment on how this person learns best with this kind of information.
So a lot of times the cognitive data is important [01:01:00] because it is developmental as well.
Dr. Sharp: Of course. Thanks for diving into that. My other question, as far as the battery, you mentioned the need for collateral information and I totally agree. I’m curious how you go about that with older adults especially… well it really, any adults, we have trouble getting collateral information, but especially older adults where parents might not be alive anymore. They may not be partnered. How do you approach gathering collateral info in some of these evaluations?
Dr. Regan: I think it’s different across settings. In a lot of places where I did my training, we had less collateral available as well. I feel like in our setting, we do pretty well with that, but of course, it’s not always available. [01:02:00] I also have the medical record to search through which electronically I can put a word in and get some of that. So even if nobody’s looked at it before, I might see all of those diagnoses. Like, the headbanging example is actually in the medical record before I asked it, but nobody had really followed up on it, so sometimes I get that.
I often will have somebody like a sibling or a spouse that can tell me those childhood stories. I’ll ask the adult for very specific stories about their childhood. So there are times that even without collateral there is so much specific information and data that I definitely will diagnose that. And what’s really nice to look at in the DSM is the 8 or 9 pages of supplemental [01:03:00] information about autism diagnosis.
I know a lot of people would probably have easy access to the main criteria on the internet, but if you have the actual DSM and can look through that supplementary. So they do say that if there is an older adult and collateral or developmental history isn’t available, the diagnosis should not be withheld just for that reason, if there’s reason to give it and you can go ahead and do that. Other times though, I will just say, there are the presence of some autistic characteristics or developmental aspects of his profile and not enough data is available to know whether he meets the threshold for that diagnosis. But the presence of these patterns is probably still neurologic and developmental.[01:04:00] In the research, they might call that like the broader autistic phenotype that someone can have characteristics. So I sometimes describe it like that. Like this is suspicious for whatever, and I don’t have enough specific data, but if this falls within the developmental realm, that may be helpful. So I might give a recommendation based on that.
So at least it’s in there in the differential. Even if someone doesn’t have collateral and developmental information, I would like to know if it’s in the differential so that when I see them, I know what I need to know. You know, like saying what do you eat or how is your sleep? So I at least put it in the differential or say these may be characteristics.
Dr. Sharp: That’s fair. Nice. Any more to say on the battery before we transition to [01:05:00] another area?
Dr. Regan: Nope. I think that’s a good summary of my approach.
Dr. Sharp: Yes, I agree. I think it’s always super informative to hear what other people are actually doing for these assessments. So, I appreciate you talking through that.
Now, I do, I do want to touch on this idea that has gotten, I think, more and more speed. It’s gathering speed over the last several months, maybe a year or two years, but this idea of self-identification on the spectrum versus diagnosis on the spectrum. I’m curious what you think about this. I mean, this is kind of an ill-formed question, but it’s something that is popping up a lot in the professional community, and this idea of individuals sort of self-identifying as autistic [01:06:00] and pursuing an assessment that may or may not confirm that. I’m curious about your thoughts on self-identification.
Dr. Regan: I think that there’s just value in talking about the pros and cons to that approach. I don’t think it’s an all-or-nothing good or bad. I think one of the pros is that you do have people who are searching for a sense of self and what makes me tick and I’m on this journey to understand myself. And I think that that search is generally a good one that I would encourage. Of course in clients that we see, perhaps the search becomes overextended, but in general, we encourage people to try to think about themselves and how they interact with other people. What’s their [01:07:00] conceptualization? What makes you tick? So I do think there’s value in that.
The practical pro is that there are not enough professionals to do the assessments. And so a lot of times there are barriers as to where would I get this anyway? What would it cost? Is this person expert enough to process with me what criteria are met and what criteria aren’t met? So there are some practical barriers, even if someone’s wanting a full assessment.
Some of the things to think about as far as cons would be that, we’ve touched on a few of these already. One is that autism is a neurologic state. And so in [01:08:00] diagnosis, we’re really answering the question of whether this neurology is present. And that does make a difference for conceptualization and for what a medical person might want to know, and how you might approach relationship issues. So, self-identifying with the characteristics may be one thing, but it may be nice to know how your neurology works. And if there’s a difference between your self-identification and how your neurology is wired.
So that would be one pro getting a further assessment from a specialist. The other thing I would say is that one thing that a professional should give the individual is not just a yes or no about the diagnosis, but to [01:09:00] add to their conceptualization and to say, yeah, you think this diagnosis really fits you in, this is your pattern within the criteria. You have these strengths, you have some struggles here, and I also noticed that your nervous system does this. I’m wondering if it’s because of this issue and this is what I would recommend.
So a professional who knows what they’re doing in that area should add something. That should always be the case, right? As specialists or clinicians, we hear the person’s narrative and we are available to say, Hey, I really think this part of the narrative fits you, but let’s shift to this other part. I’m not sure if this fits you as well, let’s consider this.
So I think getting the additional insight about the nervous system and recommendations is something that’s really important that I find that [01:10:00] people value the most during our feedback where they’re like, oh, I didn’t know that this characteristic hung with ASD. I thought of this as separate. Well, now, that’s the same neurology. That’s the same pathway. So helping individualize it and personalize it should be something that we’re doing. And then of course, if this person is in need of accommodations or something official in a workplace, for example, or at school, in a medical setting, you know, I need a private room or something for this neurologic baseline, then having an official diagnosis helps with that.
So I just think there are pros and cons as long as people understand that this is how I [01:11:00] learned to conceptualize myself through this journey and I think these pieces fit. I think that’s valid to consider. We’re probably missing more than just the layer of, is it neurologic in nature, and what other input could have a professional profile?
Dr. Sharp: Sure. Can I ask you a hard question that you may choose to totally ignore or just not answer? Here’s my question. When we’re talking about adding this layer of an official diagnosis from a neurological perspective, you’ve used that word a few times and I think we agree autism is a neurological state, right? So how do we do that when we don’t have precise instruments or metrics to do that? Like there’s no blood test, there’s [01:12:00] brain scan or anything like that, all we have is subjective data, either our own or the individual self-report or collateral report. How do we add this “neurological data” knowing that we don’t have precise tools to do that?
Dr. Regan: I think the first thing I would say is I feel like this is one of the things I’m so grateful about in my neurologic work that because I’ve seen neurologic changes with infectious brain issues and immune reactions and dementia, it’s just a blessing to be able to say, I recognize that. I’ve seen that in Parkinson’s [01:13:00] disease, or I’ve seen this ritualistic behavior in a new onset infectious immune reaction where the person did a similar thing. And I’ve seen stereotype behaviors. They’re different than repetitive behaviors. They’re not equivalent.
So I think part of it is that we see, and my experience in the hospital has been, again, such a blessing because I’ve worked on acute rehab. So with traumatic brain injury, with stroke, and their day treatment program. I’ve worked with infectious issues. I’ve worked with cancer. I’ve worked with Ms. I’ve worked with movement disorders. I think having that helps me say, that’s neurologic. I’ve seen that. And I know what that is in a patient that [01:14:00] has a new onset stereotyped movement or whatever. So I think that’s been a blessing to me.
If you’re not sure about what a neurologic behavioral pattern looks like, then yeah, you should get that experience before you do the assessment. It’s the flagging that I think we could do better with.
My other response is a couple of things. So one thing is you never want to base a diagnosis on one behavior or report of behaviors. You want there to be this, a mass thing of examples that fit a pattern, and it’s the pattern that kind of falls together. And what I have found really interesting is that even patients coming with a request for an assessment often don’t really understand the diagnostic criteria enough to produce number [01:15:00] one, specific behavioral examples.
They may come in and say, I have a hard time reading people’s facial expressions, or I jiggle my leg over and over. Well, that’s not really a compelling neurologic feature, but they don’t know how to produce specific examples across multiple sources of information that really fall together.
And I’m surprised at how many don’t actually know their criteria. So they may say, “She’s great non-verbally. She picks up on all this stuff.” And yet they’re also saying, “Oh, I think she’s definitely on the spectrum.” And so I do have situations where I find myself uncomfortable feeling like I’ve seen that neurologic piece. And then I don’t diagnose that. I’ll just say there may be some [01:16:00] characteristics here, but it’s not clear that a full criterion is met.
So there’s no reason that you have to nail that down. I’ve had some interesting experiences with about 5 clients I would say that I felt uncertain and I also was able to follow them over time, and that was really helpful. Then I get to see this in action across life events. And that really helps me. So I don’t feel like I have to nail it down, but when I see or hear an example that they don’t even know relates to this spectrum, then I’m like, “Okay, that’s neurologic and it hangs together with these other things.”
Or I say, gosh, I think this person is invested in this [01:17:00] conceptualization and that may or may not be the diagnosis, but I just don’t have enough to say that it is. And so then I just don’t, or I’ll say this could remain in the differential over time once some of their trauma issues calmed down. Or I might say regardless, this person would benefit from social skills and relationship training because they really do struggle to understand how to relate. So regardless, this would be, but there’s not enough to say that there’s a neurologic diagnosis here.
Dr. Sharp: That’s fair. I appreciate you diving into that and thinking through that a little bit. These are hard questions, right? I mean, we just want to balance.
Dr. Regan: Yeah, they are. And I think that’s a reason that people don’t want to make the wrong diagnosis and it is specialized. That’s why I think just encouraging clinicians to feel empowered to consider it in the differential [01:18:00] really would be a great step. And then if there’s not enough there, it can just be in the differential, but it may be something that really changes things for that client.
Dr. Sharp: Absolutely. My Gosh, our time has flown and we barely scratched the surface, but I really appreciate you digging into so many areas here with adult autism assessment. I know that you have a ton of resources for folks, and we’ll make sure to put those in the show notes. If folks want to reach out or get ahold of you somehow, what’s the best way to do that?
Dr. Regan: My email is firstname.lastname@example.org or my website, which is adultandgeriatricautism.com
Dr. Sharp: Awesome. Well, Theresa, this is a pleasure. It was great to speak with you. And like I said, maybe just a teaser, maybe there’s a round 2 somewhere. That’s been great.
Dr. Regan: Thank you.
Dr. Sharp: Thank you.
All right y’all, that is a wrap on adult autism with Dr. Theresa Regan. We were just scratching the surface. There are so many more questions that I could have asked and so many more things we could talk about and go into more depth with. But like we said, this was a teaser of nothing else. I’m hoping that you took away a lot of good info and can check out some of the resources in the show notes.
And like I mentioned in the beginning, Theresa is offering a 20% discount to any of you who want to learn a little bit more through some of her courses on her website. Just use the code testing psychologist.
Also, like I mentioned in the beginning, I am currently recruiting for the next cohorts of The Testing Psychologist mastermind groups, intermediate, advanced, and [01:20:00] beginner, all have open cohorts. So if you are interested, you can go to their respective pages, thetestingpsychologists.com/advanced, thetestingpsychologists.com/intermediate thetestingpsychologists.com/beginner, and schedule a pre-group call to see if it’d be a good fit.
And last but not least, if you have not subscribed to the podcast or if you have friends or colleagues who are not following the podcast, I would invite you to do that so we can continue to grow the audience and grow the reach and keep this ball rolling with testing discussion.
All right. That’s it for today. Hope you’re doing well. I will catch you next time.[01:21:00] The information contained in this podcast and on The Testing Psychologists website are intended for informational and educational purposes only. Nothing in this podcast or on the website is intended to be a substitute for professional, psychological, psychiatric, or medical advice, diagnosis or treatment.
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