Dr. Sharp: [00:00:00] Hey everybody. This is Dr. Jeremy Sharp, and this is The Testing Psychologist podcast, the podcast where we talk all about the business and practice of psychological and neuropsychological assessment.
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I’m really excited about today’s episode. My guest today, Dr. Donna Henderson is someone who I have been wanting to speak with for several months now; ever since Donna circulated a document on the PED-NPSY listserv about different presentations of autism in girls and women.
A little bit about Donna. She’s been a clinical psychologist for 25 years. She earned her doctoral degree from the school of professional psychology at Wright State University and then worked as a staff psychologist and Director of Acquired Brain Injury at the Gaylord Hospital in Connecticut. She stayed home with her kids for a few years before joining a private practice,The Stixrud Group, in 2011. She now specializes in neuropsychological evaluations for individuals with cognitive, academic, social, and emotional challenges with a particular specialty in autism, which we will talk a lot about. She’s a frequent lecturer on the subtle presentations of [00:02:00] autism, particularly in girls and women, and on parenting children with complex profiles.
I know many of you out there have been curious about autism in girls and women. There’s a lot of discussion around this. There’s a lot of emerging research. We get into a number of topics that I think will be super helpful. We spend the bulk of the episode walking through the diagnostic criteria in the DSM-5. Donna really goes point by point and explains how each of those diagnostic criteria will present differently in girls and women and others with a more subtle presentation.
So without further ado, let’s get to my conversation with Dr. Donna Henderson.
Hey y’all, welcome back to another episode of The Testing Psychologist podcast. I’m Dr. Jeremy Sharp. I am so excited to have my guest here today. Dr. Donna Henderson is on board to talk all about autism in girls and women. This is a topic that has come up so many times over the years in the Facebook group and so many requests for this podcast. So I’m just thrilled to have you here, Donna. Welcome.
Dr. Donna: Thank you. Thank you for inviting me. I’m so excited to talk about this topic.
Dr. Sharp: Of course. I was drafting the show notes before we got started and the way that I started out was, a time probably at this point, I don’t know, maybe six months ago, I got pretty much the same email from several different people within a two-day span, and it was, Jeremy, you have to get Donna Henderson on your podcast to talk about autism in girls. And I was like, “Oh, well, let me get on that” and you [00:04:00] are so gracious and willing to come on. So I’m just glad that we are finally here.
Dr. Donna: I’ve been looking forward to it.
Dr. Sharp: Cool. I’d like to start as usual, just with a brief intro of sorts, in your own words, of why this. Why are you zoned in on autism in girls?
Dr. Donna: My background and my perspective are I think a little bit different from some of the other autism specialists that you’ve interviewed. For one thing, I don’t work in a dedicated autism clinic. I’m in a general neuropsychological practice. I think that gives me a different perspective.
For most of my patients who end up being diagnosed with autism, very few of them have that as the original referral question. Very few. They mostly get referred for ADHD, anxiety, school refusal, behavioral issues, just a variety of things, but the majority of the time, neither the referral source nor the parents are thinking about autism. And so that’s a very different type of patient and very different testing dynamic than people who show up at an autism clinic because somebody is overtly thinking this kid might have autism.
I also might have a different perspective because of my clinical experience. I’m not somebody who did autism evals from the beginning of my career. I fell into this completely upside down and backward. I spent the first 10 years of my career in rehab working with people who had traumatic brain injuries and strokes. I was a staff neuropsychologist and eventually the Director of Acquired Brain Injury at Gaylord Hospital in Connecticut.
I loved it so much. I loved the multidisciplinary work, but I had three kids in [00:06:00] a little less than five years. I wanted to stay home with them, and so, I left and I stayed home for a few years. When my youngest went to kindergarten, I was more than ready to get back to work, but I didn’t want to go back to rehab because it required me to be there for 40 hours a week. I wanted a little more work-life balance. So I decided to make the leap into private practice.
I figured I know how to test. I know how to write reports. I know how to give feedback. So I just need to learn a new population. I decided to do ADHD, LD kind of work. I did it the right way. I got supervision. I joined a practice where I got supervision and then I paid a pediatric neuropsychologist on the side to supervise my reports for the first year or two and read a lot. And I loved it. After a few years, I moved to the practice where I am now, The Stixrud Group in Maryland. Like I said, it’s a general neuropsychological practice. Love it there too.
The thing is, through all of these years, it’s been 11 years since I started private practice, I’ve encountered a lot of testing psychologists and neuropsychologists who point-blank say, I don’t do autism. And it’s funny because you never hear somebody say, I don’t do dyslexia or I don’t do anxiety, right? It’s just autism.
There’s something about autism that so many people seem to think it’s okay to just not do it. And so, I thought that too, for the first few years. Frankly, I was happy about that. I had no interest in autism. I was intimidated by it. I think a lot of people are intimidated by it. So I just went along happily for the first two years thinking I didn’t see anybody with autism. And then I saw a patient one day and she was…
Let me tell you just a little bit about her because this was a turning point for me.[00:08:00] She was 17 years, in 12th grade when I saw her. She grew up in a well educated affluent family. Her father was a well known litigator. She went to all the best private schools here in the DC area. Super smart kid.
When she was in elementary school, she was having some ADHD type stuff. And so she had a good neuropsychological evaluation, and they diagnosed ADHD. And then when she was in middle school, she had another neuropsychological evaluation and they said, yes, still has ADHD. And guess what? Now she has anxiety too. So she started getting treated for anxiety. Then in high school, depression entered the picture.
And so, by the time she got to me in 12th grade, just for repeat testing because she was going to college, nobody was expecting any surprises at all. She had these three diagnoses, anxiety, depression, ADHD. It seemed like a really straightforward evaluation. She had been in therapy for 7 years and was on medication also for the ADHD and the anxiety.
I’m testing her and she’s working on a math problem. I had a moment to just pause and reflect, and I remember realizing that I was having a visceral negative reaction to her. I guess I want to say, that almost never happens to me. Whether or not a kid is on the spectrum, that almost never happens to me. Like most of us, I enjoy the kids I work with.
So my first thought was, well, she’s really depressed. And sometimes depressed kids are hard to connect with, but then I instantly thought, oh, that doesn’t make sense. I connect with depressed kids all the time. And then I realized, well, she seems to be really arrogant. So like, I would introduce a new test and she might say, seriously, in this tone of voice that a 17 year old does not usually use with their doctor.
And I thought, well, maybe there’s this arrogance that has [00:10:00] something to do with her very privileged background. And then the next thought, and I don’t know where it came from was, this is autism in a completely different way than I’ve ever thought about it before. It didn’t make sense to me in the moment, but I had this gut feeling that I was onto something.
So I went back through her early report cards much more closely. I interviewed her mother again in much more detail. I had no clue what I was doing, but I was digging and I found so much evidence for autism. So much. And I knew I was right.
I called her therapist who’s a well known therapist in this area, somebody I respect, and I said, this is what I think. And she said more or less, you’re completely wrong. You’re nuts. I have no clue what you’re talking about. It was such a blow to me. I had no confidence. And it’s one of the reasons I’m telling this story, I guess, because this lack of confidence to bring it up when it’s never been brought up before is a big problem for a lot of people.
I decided to push through anyway and pitch it to the parents. Like I said, dad was a litigator, so I knew I was going to be interrogated and I was for two hours. I really had no clue what I was doing, but I could tell I was winning him over.
Mom was really quiet, also super smart lady. After two hours, dad took a break to use the bathroom and mom leaned forward and said, you are so right. Her whole life makes sense now. And I’m sure he must have it too. And that was my second aha moment on that case. It never occurred to me that he had it. I was intimidated by him. He’s super high functioning. Now of course I see it in the parents of my patients all the time, but it was such a huge moment.
So that was when I realized, I can’t say I don’t do autism. I can’t completely avoid this. I still wasn’t as into it as I am now, but [00:12:00] I realized I had to do it. And my sense is that there are a lot of clinicians that are like that, like I was. They think that they can avoid autism or they assume that it’s just not coming into their office; that people who have autism go to autism clinics.
And what I’ve learned is that’s completely wrong, particularly with the girls, with the boys too, but particularly with the girls, it shows up unexpectedly. And so, I’ve seen countless girls now with these stories where nobody is thinking about autism and that’s what it ends up being. And it’s utterly life changing for them to get a diagnosis. So I have this missionary zeal now to raise awareness about this type of autism. It’s really satisfying work. I’m enjoying it a lot.
Dr. Sharp: Clearly. That is a fantastic story that I know a lot of people out there are nodding along to at this point. We’ve all been there. And you’re totally right. This is a big reason that we’re having this conversation is that those girls are out there. Boys are too, but I feel like been there have been a lot of girls over the years that are that are missed and the presentation is different a lot of the time.
Dr. Donna: For sure.
Dr. Sharp: So you are right on. I guess that’s a nice segue to the first “real question” here, which is, are we actually missing girls with autism?
Dr. Donna: That’s usually the first question I get. And so, let me be so clear. Yes, absolutely, positively. The research is clear. There is evidence that autism is underdiagnosed in females. There’s evidence that even when they’re [00:14:00] diagnosed, it’s almost two years later than similar boys. So if a boy and a girl have really similar symptoms, the boy will get diagnosed two years earlier; two years more of intervention and understanding and support. It’s huge. There’s evidence that girls require more challenges and higher autistic traits to be diagnosed.
It’s so clear, Jeremy. It perplexes me why there are still people saying, are we really missing the girls? It’s just so clear to me. I think maybe a better question might be, why are people still doubting this? I don’t quite understand it.
I think it has something to do with the ascertainment bias in the literature. Ascertainment bias, I think most of your listeners are familiar with, but just to be clear, it has to do with differences in how data is collected, and if one data method is going to be more inclusive and another data method is going to leave a certain part of the population out.
So for autism, if a study only includes people who showed up at an autism clinic because somebody looked at them and said, geez, this kid seems like they might have autism, and then they got diagnosed with autism with traditional methods, we know that study is going to exclude certain members of the population. Girls, is what we’re talking about today. It’s going to exclude girls, but other people too, for instance, minorities.
There was recently a meta-analysis of prevalent studies that looked at the male to female ratio in autism. Studies that just included existing databases of patients who had already been diagnosed pretty much at autism clinics showed 4 to 5 males for every female. In contrast, studies that screened a sample of the general population found more females. They found 3 [00:16:00] males to every female. It’s really compelling.
One predictive model that I read last year was published last year from population based data, not from an autism clinic, estimated that about 39% more girls should be diagnosed. And this goes all the way back to the beginning. Connors and Asperger’s original groups included 12 boys and 3 girls.
So from the beginning, we got into this vicious cycle where there were fewer girls diagnosed. So there were fewer girls represented in the research. So the research didn’t reflect them. Rating scales and tests don’t reflect the girls. And so there are fewer girls diagnosed. And so you’re in this vicious cycle, you know?
Oh, I should say one more thing though. It’s interesting. If the overall ratio is 3/4:1, let’s see, for people with intellectual disability, the ratio is about 2 boys to 1 girl, whereas people who have average to well above average intelligence, people who used to call Asperger’s it’s about 9 boys to every girl. So we’re particularly missing girls with average to above average intelligence.
Dr. Sharp: Why do you think that is?
Dr. Donna: There are a lot of reasons why we’re missing them. I think it may make more sense to talk about that after we talk about how they’re different.
Dr. Sharp: Yeah, I could go with that. And I think that totally makes sense that the presentation is different and that’s leading to lower rates of diagnosis. So maybe we jump into that real, I was about to say real quick. That’s not going to be real quick and that’s totally okay. But let’s jump into that. How are girls on the spectrum [00:18:00] presenting differently than typical or boys?
Dr. Donna: Absolutely. I can go on and on for this. So if I go on for too long, feel free to tell me to wrap it up.
Dr. Sharp: Deal.
Dr. Donna: And I promise, I’m going to get back to your other question about why we’re missing them because it’s an important question, but let’s talk about how they’re different first.
The way I usually like to talk about how they’re different is by following the DSM criteria. So the first thing to know is the criteria have to be met currently or by history. And that is such an extremely important point. It speaks to the importance of excellent developmental history, which we can talk about later when we talk about the battery, which I assume we’ll get to.
Dr. Sharp: Oh, yes.
Dr. Donna: So because if a child had certain symptoms when they were young, like maybe they had really significant sensory sensitivity to noise when they were in preschool and they don’t seem to have it anymore, it still counts toward the diagnosis. So that’s why this is an important point.
But the reason it’s important when particularly thinking about girls is they have a different timeline than the boys. Research shows that girls with autism have fewer identified problems when they’re young, like when they’re in toddler age, preschool age, early elementary school, they have better adaptive functioning than the boys in those early years, but they have more problems, a more rapid increase in their autistic symptoms during adolescence.
It’s definitely been shown that girls do better early on, some girls, not every girl, of course, and have more difficulty as they get older. And that’s such an important point because so many people rule out autism if there’s no obvious early history of it, but they have to remember [00:20:00] there’s this timeline where they hold it together, hold it together, hold it together, and then around 5th or 6th grade, girl world gets crazy and they can’t hold it together any longer, right?
Dr. Sharp: Right.
Dr. Donna: Also, I find that if you do a really good developmental history, you’re going to find the earlier problems. They’re subtle but they’re there. You just have to look more carefully. So before we even get to the criteria, that’s a difference right there. The timeline is different.
So the first section is social and communication differences. There are three criteria and kids have to meet all three.
The first one is reciprocity. Very briefly, I’m not going to explain all the criteria, but just for your listeners who aren’t familiar, this has to do with every aspect of the back and forth flow of interactions. So intuitively greeting people, responding to greetings, sharing personal information, showing interest in other people, taking a different person’s point of view, being reciprocal; by reciprocal I mean, if I drop social breadcrumbs, you’ll pick them up.
I love to do this with kids. In the middle of the session when you’re taking a little break or between tasks, drop some social breadcrumbs. They can be really subtle or they can be really overt. So I’ll say something like, something really weird happened to my dog last night. That’s pretty obvious, right? Even a really little ADHD kid who’s barely paying attention will probably stop and go, what happened, right? And that’s reciprocity.
Sometimes when I’m talking to kids, I explain all this like a ping ponggame; a conversation is like ping-pong. We have to be hitting the ball back and forth. If I’m just hitting a ball at you and you’re not hitting it back to me, we’re not having a conversation. Or if I’m hitting a ball and you’re hitting a different ball, meaning you’re on a different [00:22:00] topic, that’s not a conversation. I try to make it concrete by talking about it that way. So that’s reciprocity.
Compared to boys, girls with autism are absolutely more engaged in conversations. They’re more reciprocal in conversations. They share their interests more. Essentially, they have better basic social niceties and basic conversation skills, particularly in their topics of interest, and particularly when they’re one on one with a supportive adult; meaning in the testing situation, that’s when they’re at their best. And these girls fool even me. I still diagnose autism in them, but there are times when the history and the test results are so clear, this girl has autism, but she doesn’t look like she has autism on the outside. So it’s such an important point.
Girls also have better imaginative and pretend play than boys do. They look like they blend in more on the playground. There have been studies showing, for instance, if you’re a parent or teacher on the edge of a playground, a boy with autism will be obvious. He’ll be clearly a loner on the playground, whereas, from a distance, the girls look like they’re blending in. They’re not really truly blending in, but they look like it from a distance.
I’m trying to think if there was anything else I wanted to say about that. Can I tell you a story about this? It’s one of my favorite stories that I think it’s so relevant.
Dr. Sharp: Of course.
Dr. Donna: Women with autism tell us all the time. I can pull off socially typical, but it’s so hard for me. I’m working really hard. So this story takes place, I think the girl was about maybe in 8th grade, super-smart girl; straight-A student in one of our crazy high school districts. And this [00:24:00] was a hiking family and the mom said growing up, we always took hikes. And you know, when you’re out on the trail and there’s no one around and you pass someone, you acknowledge them, you say good morning, or you nod and smile. And she noticed that her oldest girl, let’s just call her Jane, Jane never said hello to anybody on the trail. Her other two children instinctively knew to do that.
Now we’re in 8th grade, they’re walking into a supermarket one day and they pass a family that they had known for a long time but hadn’t seen in about a year. So the mom stopped and chatted with the other parents, but the daughter just kept walking into the supermarket.
So when the mom caught up to her, she said, Jane, why didn’t you say hi to Abby? They had a same-age girl. And Jane said, “Well, I don’t know, Abby” and mom said, “Well, you were in the same cross scout troop; she’s been to play dates in our house; you’ve been to her house. Of course, you know her.” And Jane said, “Yeah, but I haven’t seen her for a long time.” And the mother said, “Yeah, but the rule is, if you know someone and you haven’t seen them for a long time, you say hello, especially if you haven’t seen them for a long time.”
So now they’re in the supermarket and the girl was thinking about this and she said, okay. So the rule on the hiking trail was to say hello to everybody, and the rule is you say hello to people you know, even if you haven’t seen them for a long time, is the supermarket like the hiking trail where you say hello to everybody? And the mom said, well, no, that would be weird. And the girl, this brilliant girl burst into tears in the supermarket and said, how are we supposed to keep track of all of these secret rules? And that was such a moment for that mother because women who don’t have autism, we don’t think that way. It’s instinct.
Dr. Sharp: It’s instinct. Right.
Dr. Donna: So that’s what it’s like. They’re pulling it off, but the inner experience is different and it really speaks to how important [00:26:00] it is to get at the girls’ inner experience and not just go on their behavior.
Dr. Sharp: Right. I’ll phrase it to parents sometimes like it’s as if the manual was never downloaded. It’s not just part of the operating system, which is a funny metaphor, but it’s not intuitive.
Dr. Donna: Right. It’s not intuitive is the best way to put it because they can do it, but it’s effortful for them.
Dr. Sharp: Yeah.
Dr. Donna: So, that’s the reciprocal interactions. Obviously, only hitting the tip of the iceberg there.
The next criteria is relationships. And it’s not as simple as do they have friends? It’s about every aspect of relationship management. So this includes social motivation, making friends, which is separate from keeping friends.
I’ll take a brief detour here and say, what I do when I’m interviewing parents is something I call friend mapping. I have them walk me through the girl’s life in chronological order. Just tell me the story. At every stage, I’m always asking, who is she friends with? First names only. I don’t put the names in the report, but I want to keep track.
So if they say, oh, in 1st grade she was best friends with Anna. And what was Anna like? Oh, Anna was kind of bossy, but they were good friends. Great. Now we’re in 2nd grade. She still has friends. Okay. Whatever happened to Anna? Anna went by the wayside. That didn’t last. But now she’s friends with Mary this year. Great. Wonderful. Now we’re in 3rd grade. What happened to Mary? Oh, Mary is gone.
So you can start to see this pattern of, she makes friends easily, but she can’t keep friends. You do the friend mapping and you can see these patterns where the parents might say yes, she’s always had friends, but they haven’t noticed the pattern that she turns her friends over every 6 to [00:28:00] 12 months and she has never had a sustained friendship. And the opposite is true. Some kids are good at keeping friends, but not making them. And the way I see that is they have a group of friends in preschool that’s usually initiated by all the moms because the moms are friends and they somehow maintain that group straight through high school, but they’ve never made another friend the entire time.
Dr. Sharp: I hear those stories.
Dr. Donna: All the time, right? And so it’s not as simple as does she have friends? You have to get underneath. You definitely also have to think about social flexibility in this category. So can she intuitively adjusts her social presentation in different relationships, in different contexts to show understanding of relationships?
Dr. Sharp: Can you give an example of that. When you say flexibility, what are two different contexts where a girl might need to present differently or adapt?
Dr. Donna: I’ll give you two different kinds. One is so speaking to a teacher the same way that you would speak to your friend. The girl that I talked about at the very beginning who was speaking to me in a way that could be considered disrespectful; she was speaking to me the way she might even speak to a younger child. There was no sense of respect there. And I came to find out that’s the way she spoke to all of her teachers all the time. So not intuitively. Sometimes I ask parents that, does she have a healthy fear of adults to try to get at that?
But a totally different type of social flexibility is, Jeremy, if you and I are hanging out and we’re friends and Eddie wants to join us, am I flexible enough to include him in that even if I don’t like him, or do I need to have you all to myself? Do I glam onto you and I’m rigid about that? So there’s that type of social flexibility as well. So, it’s quite complex. There’s a lot to it.
So in this category, girls are different from boys in a [00:30:00] number of ways. First of all, they show a lot more social motivation, more desire for social interaction, more desire for friendships. They are much more likely to have one or two close friends. Parents of boys with autism are more likely to talk about him lacking close friends, whereas girls with autism, she’s had best friends, but maybe they’re always two years younger or they’re always frenemies and it’s fraught with conflict. There’s always some little caveat to it, but they don’t tend to be out and out friendless.
Girls with autism tend to have better friendship, quality than boys with autism, but not as good as typically developing girls. They’re better able to initiate friendships, but not to maintain friendships. That’s why it’s important to do the social mapping as well.
It’s also really essential to talk to teachers for a variety of reasons, but one is to understand their friendships because parents don’t always know. Even parents who are good reporters, attentive parents, one thing I frequently hear is the parents will say, maybe the girls in 3rd grade and they say, oh yeah, she’s got a best friend. She’s friends with this girl, Olivia. They love each other and they do things together. And it’s great.
And then I talk to the teacher and the teacher says, yes, Olivia is very, very kind to Jane, but guess what? Olivia’s the most popular girl in the class. She’s friends with everyone. And Jane has a really hard time with that. And the teacher is too scared to bring that up with the parents because she doesn’t want to hurt the parents’ feelings, but that’s a real issue there. So got to talk to those teachers to get at this stuff.
Dr. Sharp: Yeah, that’s just a good shout out and reinforcement for that process. It adds so much depth to actually have a conversation with these teachers.
Dr. Donna: For sure. There’s no way around it. Yeah. So then the last criteria that speaks to social and communication is nonverbal [00:32:00] communication. That also encompasses a lot.
We could start with eye contact. It’s not as simple as does she look at me across the desk when I’m testing her. It’s about using eye contact to manage interactions. And I cannot stress this enough. It’s about her subjective experience of eye contact because so many of these girls have fantastic eye contact, really great.
Nobody is complaining about it, but if you ask the girl and nobody has ever asked her this before, what’s your experience of eye contact? You are going to hear a lot. You’re going to hear things like, I find it very distracting. I forget to use it. I have to remind myself. People get annoyed with me about it. Eyes creep me out. I hate having to look at people in the eye. It’s a necessary evil. You’ll hear so much. Whereas if you ask a girl without autism her experience of eye contact, she’ll be like, I don’t know, whatever. We don’t think about it, right?
Dr. Sharp: Right.
Dr. Donna: So getting at that subjective experience is so important. For facial expressions and gestures, there’s evidence that girls have more vivid gestures than boys with autism and that they coordinate their verbal and non verbal communication better. So their expressive stuff is good. They’re less likely to be flat, but the research shows they’re not more able to understand neurotypical nonverbal cues. So weeding other people’s social cues.
Now, I haven’t read this anywhere, but I’m so convinced of it. A lot of these girls are exquisitely sensitive to general emotional tone in the environment, and that tricks parents into thinking that they’re reading social cues, but there’s a difference between picking up, Ooh, there’s something bad here and being able to differentiate [00:34:00] is mom annoyed? Is she rageful? Is she jealous? Is she tired? Is she hungry? Is she distracted? Like to weed out all those differences. They tend to jump to, you’re mad at me. Or they have one go to. So being sensitive to emotional tone is different from reading social cues. And that’s important.
One of my favorite questions. Oh, sorry, were you going to say something?
Dr. Sharp: Yeah, I was just going interject with some anecdotes. I’m curious what you think of this. I seem to hear a lot of stories from parents of girls who we suspect are on the spectrum.
There’s that question on the ADI-R that is something around, do they know when to offer comfort or recognize when other people are hurt? I’ll hear a lot of parents say, yes, she’ll come up and give me a hug or she’ll just notice. I wonder if that plays into this emotional sensitivity piece that you’re talking about,, like they can notice and maybe even react, but the nuances are unclear. It’s hard to know when to stop or what kind of comfort might be appropriate.
Dr. Donna: Absolutely. The girls do have greater empathy than the boys. Let’s just be clear. People with autism certainly have empathy. The whole, they have no empathy is obviously a myth. And the girls more than the boys. We have to remember, these kids tend to do a lot better with parents and other supportive adults than with their own peers. And so the real key is, how they do with their peers?
Dr. Sharp: Great point.
Dr. Donna: The other thing I always try to weed out with parents is, it’s easier for not just the girls, for anyone, with autism to show empathy when they’re not directly involved in this situation, but when they’re involved in the situation, [00:36:00] and it means you have to get out of your own point of view and get into another person’s point of view, that’s a harder thing to do. It’s harder for anyone, but particularly for someone with autism. So there’s that piece too.
Dr. Sharp: Right.
Dr. Donna: One of my favorite questions I ask the girls or the parents of the girls is, how does she do when you’re walking together? Because if you ask parents of a girl without autism that question, they’ll be like, I don’t know. She walks with us. What do you mean? But the parents of girls with autism will say, it’s so funny you ask that. She’s always 5 feet ahead of us, 5 feet behind us or bumping into us constantly. I’ve just heard it so many times. To me, that’s part of nonverbal communication. It’s coordinating your body with somebody else’s body. It’s a really common problem.
Dr. Sharp: Yeah. I’ll talk with parents too about the, I don’t know if you call proprioception exactly, but just that sense of how the energy fields are merging or not. It’s tricky. Just a little too close or a little too far away or the leg is just in a little awkward position that’s different than what we’d expect.
Dr. Donna: Exactly. Or how to come into a hug. Plenty of people with autism can be affectionate, but for a lot of these girls, the parents will say, I hug her and she’s just sort of stiff. She doesn’t know how to melt into the hug. And that’s another aspect of this.
Volume control is another aspect where I think it’s more obvious with boys because maybe they’re more loud where some of the girls are too soft all the time. And you’re constantly having to say, speak up. People just say, oh, it’s shyness, but people aren’t shy with their parents, and if their parents are having to ask them to speak up constantly, that may be difficulty with volume control. [00:38:00] So they just generally do a whole lot better with the nonverbal. So it just can’t be stressed enough. It’s really easy to miss it. These girls can pull it off.
I am reminded of a story I heard. I was giving a talk about this maybe 3 or 4 years ago, and there was a psychological associate in the audience who I had worked with. His name’s Eric. Very good psychological associate; knows autism really well. He’s run many peers groups, the social skills groups.
He got really excited when I was talking about this. And afterwards, I said, “Why are you so excited?” And he said, “The first night of a new peers group, it’s always clear to me why all the boys are there. And some of the girls it’s clear to me why they’re there, but there’s always 1 or 2 girls, and I think it was a mistake. I think, who stuck her in a peers group? She should not be here.”
And he said, “The second session goes by. Sometimes the third session. I’m still thinking, why is this girl here? She’s completely socially typical.” And he said, “Sooner or later, they can’t keep it up. And I see why they’re there every time. It just takes some of these girls a lot longer to show it.” It’s really interesting to me.
Dr. Sharp: Yes. Great point.
Dr. Donna: So then the second section is repetitive and restricted behaviors. There are four and you only need to meet 2 of the 4. So that’s a really important point. And generally speaking, the boys show these more and in more obvious ways than the girls do.
The first one is repetitive behavior. This includes motor movements or language or use of objects that’s either repetitive or idiosyncratic. That’s a whole lot of stuff right there. So if somebody’s just asking about flapping or flicking, you’re going to miss a lot.
Research shows that females with autism show reduced repetitive behaviors compared to males. [00:40:00] What I notice is of the 4 RRB criteria, this is the one the girls are least likely to meet. I’ve not seen that anywhere. It’s just what I’ve noticed. The kinds of repetitive behaviors they have are: pacing back and forth is a big one, walking the perimeter of the backyard, walking the perimeter of the playground, skin picking is a very important one to ask about, twirling, reading the same book over and over again, watching the same movie over and over again, drawing the same thing over and over again. So these are all behaviors.
For language, look for scripted language that’s the same all the time. I had one girl whose mother told me, every night or evening or whatever I say, how was your day? And she says, fine. How was whatever you did today? And the mother said, “I didn’t notice it for a long time, but I finally realized even if we had spent the whole day together, even when she knew exactly what I did all day, she used the same exact wording, how was whatever you did today?” Very rigid wording.
I’ve had a number of parents of girls talk about dancing as an interest, and then I poke at that because if it’s truly dancing, “Yeah, she takes Irish dance lessons,” whatever, that’s fine. But sometimes they say, well, it’s not typical dancing. She likes to do it by herself in her room. Sometimes she’s not even playing music.
I had one like this recently. I’d say about half a dozen times a year I hear this sort of thing where the mom was saying, Nope, she’s doing TikTok dances and the dad was saying, no, that’s not a TikTok dance. There’s something odd about those movements. So, of course, I asked the girl and she said, no, I’m not dancing. They’re just movements I like to do. They make me feel good. And no, I never do it to music. It’s private. I don’t want people watching me when I do it. It’s something I do every night to just [00:42:00] relax.
So poking at things like that are important because with the girls, it’s not going to be as obvious as with the boys.
Dr. Sharp: Yes.
Dr. Donna: So the next one is inflexibility. In general, girls tend to internalize more and boys tend to externalize more with or without autism. That’s an important point to keep in mind when you’re thinking about flexibility issues because with the boys, we tend to see externalizing rigidity which looks like behavior problems. It’s really obvious. People come in complaining about his rigidity. But the girls, they tend to internalize. So you’re more likely to see things like difficulty adjusting to change. It’s super important to ask about that.
I had a girl maybe two years ago. I saw her when she was 10 and she was incredibly rigid. I remember one of the things her parents said was, “We painted our bathrooms a new color two years ago, and she still complains about it almost every day. She just can’t get over that the bathrooms are a different color.” And they easily gave me 10 more examples of that type of rigidity.
And by the way, this girl had been seen by a board certified neuropsychologist the year before she saw me. So she was 9 years old. The possibility of autism wasn’t even brought up, not even considered as far as I can tell. She was diagnosed with ODD and it was mentioned that she might be developing borderline personality disorder as an adult. She was 9. They didn’t even consider autism. There was no history of trauma. The parents couldn’t have been more attentive and delightful and stable.
That’s an extreme example of something I see constantly where the possibility of [00:44:00] autism isn’t even being considered. So now I’m slightly off topic. Let me get back to flexibility. Sorry.
Dr. Sharp: I’m with you though. I think that’s important. It calls back to your point in the beginning about how some of us may have a little bit of imposter syndrome with this whole diagnostic realm. Hey board certified neuropsychologist. This didn’t even come up. Who am I to think down that path? I think that highlights a really important point here.
Dr. Donna: Absolutely. I help other psychologists regularly on this topic and I almost never charge for it. I do groups with other psychologists. I got a phone call yesterday from a lovely psychologist in Los Angeles who had been part of a recent group where I was just teaching people. I do case consultation. She said, I’ve got this girl. I’m more or less sure she has autism, but I’m just not confident enough to bring it up because she was seen for neuropsych a few years ago and that person didn’t even mention it and no one’s mentioning it. I just don’t have the confidence.
It’s such an important point. And I definitely had to move through that myself. And I’ve had to have many conversations where I call another clinician, even somebody I really respect, and I have to say, look, I don’t say it like this, but basically look, I think you missed this.
I had one experience where I saw a kid who had been seen by one of the most beloved psychiatrists in the Washington DC area. This person is an amazing psychiatrist; brilliant, just so warm and attentive. Everybody loves this guy. I do too.
I saw one of his kids who he had been seeing for 10 years. I was diagnosing autism in [00:46:00] her and I was terrified to call him. Absolutely terrified. I screwed up my courage and I called him. I said, what do you think? He said a whole bunch of things that I agreed with about like anxiety and ADHD and all that, and he never mentioned autism. My heart was pounding. And I said, I got to tell you, I really think she has autism. And there was this long awkward silence for like 5 or 10 seconds. It felt like 5 or 10 hours to me. And I was just like, Donna, what are you doing? You cannot disagree with this guy. And he said, I totally missed it. And I get that more often than, no you’re wrong.
Dr. Sharp: It’s validating.
Dr. Donna: Yeah. It was so validating. Sorry, I cursed on your show, Jeremy .
Dr. Sharp: Hey, that’s totally okay.
Dr. Donna: That’s literally what he said. It was awesome.
Dr. Sharp: Weird.
Dr. Donna: Good. Back to how girls are different with flexibility. Definitely rigid rule following is a big one. And so a lot of times with these girls, what you’ll hear is she’s the most perfect girl in the class. She’s a role model. The parents might tell you, she has never given us pushback.
Now you might get that in one place or the other, but not both because a lot of times it’s a Jekyll and Hyde. She won’t break a rule at school, but she’s losing it at home or vice versa. But I’ve had girls who can’t skip a chapter of a book. They can’t watch movies out of order, even movies like James Bond, where you don’t have to watch them in order, they have to watch them in order.
I had one girl who’s 16 who I saw recently and she was clearly annoyed with her mother. When I got to the waiting room, I said, well, “What happened?” Her mother walked slightly outside of the crosswalk when they were walking into my office and she just couldn’t tolerate that. So looking for that kind of rigid rule following.
So when parents tell me, she’s perfect, she’s always been just such an angel. I will poke at it. [00:48:00] Is she too good? I mean, kids should be able to bend the rules, break the rules, see what they can get away with, right? That’s typical. We like to see a little bit of that.
Definitely looking for black and white thinking about things. A lot of these girls engage in black and white thinking and that can look like extreme perfectionism. Lots of kids are perfectionistic without being autistic, of course, but these girls bring perfectionism to a whole new level because of their black and white thinking.
Dr. Sharp: Yes.
Dr. Donna: And definitely just looking for little pockets of rigidity. I saw a girl recently who loved to sing. She has a beautiful voice, but she dropped out of the chorus that she loved because she couldn’t choose all the songs, and she only wanted to sing songs that she herself could choose. And that’s rigidity. And don’t forget that being literal is part of rigidity because it’s rigid interpretation of language. And a lot of these girls can be quite concrete in their interpretation of language. So, look for things like that and not necessarily behavioral problems.
Dr. Sharp: Can I ask a quick question about the literal language?
Dr. Donna: Sure.
Dr. Sharp: Is that something that you would classify under the social realm or the restricted and repetitive behaviors, or both?
Dr. Donna: Well, I try not to put any one symptom in two different categories. You’re not supposed to do that unless there’s a truly different aspect to it. In my opinion, it goes under inflexibility. It is considered, and I think it may even say that in the DSM, it is considered inflexible interpretation of language. Usually, we interpret language in a flexible way depending on the context, right? Context is everything with these kids. So that’s where we put it.
Dr. Sharp: Nice. Okay.[00:50:00] Dr. Donna: All right. So let’s see. We’ve got two more criteria. One is interests. So these are restricted interests that are intense or atypical. Boys are more likely to show atypical interests. The things that people think of like airport codes and train schedules. Things that have to do with objects and information. Girls are more likely to have typical interests that are intense. And they’re more likely to involve people or animals. Animals are really common one. It can absolutely be cats and dogs. We see that all the time.
I had one girl, the girl I mentioned earlier who somebody thought might be becoming borderline at 9. She was just obsessed with this Axolotl; I think you say it’s some kind of endangered salamander. She was into it, man. For a few years, she had been into it.
I had one 14 year old who had an intense interest in sharks. I asked her why, and she said, because they’re so misunderstood. People think they’re mean and unfeeling and they’re not. It was so poignant. Definitely my little pony and cosplay and all of that. None of them are unusual, but it’s the intensity that grabs you.
A really common one that we see is reading. I always feel funny when I bring it up with parents because if they say, oh, she’s an avid reader, a voracious reader, she loves to read. I always say, well, like I don’t want to be turning a positive into a negative, but is it ever too much reading? And if they say no, never, it’s just perfect. It’s wonderful. Then I’m going to leave it alone.
But a lot of times they’ll say, it really is because she wants to read at the dinner table every [00:52:00] night and every single minute that we’re in the car. And if we’re taking a hike, she’s reading while she’s walking and she’s reading in the shower, not the bath, but the shower and she’s getting in trouble at school for reading. Then it’s rising to the level of an intense interest. And we see that all the time. It’s a very common one.
People- these girls can become intensely interested in people. So like K-pop. They might memorize everything about a certain member of a certain K-pop band or Taylor swift or whatever. I had one girl who was maybe 13. Her family was not Korean. She was not a singer or a dancer, but she was so obsessed with K-pop. She taught herself Korean. She spent all of her downtime learning Korean on her own because she wanted to transfer to a high school in Korea to become a K-pop singer.
Dr. Sharp: That is intense.
Dr. Donna: It was that’s intense. Yeah.
Definitely fan fiction. So, even though an interest is not atypical, if it’s intense, it needs to count. And that’s what it’s going to look like more with these girls.
Dr. Sharp: I find that I, and this maybe again, just anecdotal, but I find a lot of maybe pre-adolescent to early adolescent girls, even into maybe later adolescents that have the interest in say anime or manga. That kind of thing seems to come up frequently, at least in the girls that I see.
Dr. Donna: Oh, and the boys too. The whole world of Pokemon and anime. The man who created the world of Pokemon has Asperger’s.
Dr. Sharp: I did not know that. That’s fascinating and not surprising.
Dr. Donna: Not surprising at all. Absolutely. And I think that that one is fairly well known. People on the spectrum tend to be drawn to that. So that’s a common one.[00:54:00] The one thing I’ll say, I strictly adhere to the DSM criteria, and I will not diagnose a girl who doesn’t meet the criteria with this one little exception; I do play it a little bit loose with the word restricted when it comes to interests. I’ve talked to people who take that word very seriously, and the interest has to eclipse everything else in the girl’s life. And I almost never find that to be true with girls or boys where it’s truly eclipsing everything.
I mean, usually there’s yeah, the parents put her in girl Scouts and she enjoys girl Scouts or yeah, the parents signed her up for soccer and she’s into it. Or she likes to do arts and crafts. Or she’ll read Harry Potter, but she’ll also read The Lord of the Rings. So that’s the one place where I’m definitely looser. I don’t feel like it has to eclipse everything else in her life because with the girls, at least, I don’t see that a whole lot.
Dr. Sharp: I see. That makes sense.
Dr. Donna: Last one, sensory. Research shows that girls with autism have more sensory challenges than boys with autism. And it is unbelievably important to ask the girl herself because they’re internalizes. Parents may or may not be aware of their sensory challenges.
There have been times, I’d say most of the time the parents are aware, but I have had times where I ask the parents and they say, “No, not really.” And I ask the girl and she’ll be like, oh yeah, let me give you my list of things that really distract me and bother me to know. And so, it’s so important to ask the girl even more than the boys, but I obviously ask the boys as well.
Definitely look at hygiene when you’re thinking about sensory because if there’s poor hygiene, there’s a really good shot there is some sensory component to it. Like I won’t wash my hair because I can’t stand the feeling of my hair being wet. That kind of thing.
Definitely looking at things that seem like phobias. So when these kids are growing up, they [00:56:00] tend to get these odd little phobias or almost phobias. A common one is being afraid of public bathrooms. When you ask the girl and you trace it back, it’s the sound of all the toilets flushing. And that really bothers them. So, when there’s a phobia or even something that approximates a phobia or just an unusual reaction, it’s important to really poke at that to see if there’s a sensory piece going on.
And don’t forget to ask about pain tolerance with these girls too, because exceptionally high pain tolerance is not uncommon. And that the whole interception piece is incredibly important with these girls, I think with the boys as well. I haven’t read anything about the girls having better or worse interoceptive awareness than the boys, but it’s such a huge piece for these kids, right?
Dr. Sharp: Yes. I’m so glad you said that. I feel like that’s one of those questions whenever I have a trainee sitting in with me, they’re always like, why are you asking about pain tolerance? But it’s one of those components. It’s really interesting. I get a lot of parents who are like, you know, since you mention it, she had that ear infection for a month and never cried and we only knew it when we took her in for a well-check or something along those lines.
Dr. Donna: Yeah, exactly. Or the interception piece. Does she know when she’s hungry? Does she know when she’s anxious? Does she know when she has to pee? The inner sensory world because sometimes these kids struggle with that so much, the boys and the girls. So, I think that’s probably a pretty good summary of how the girls are different from the boys.
Dr. Sharp: Right. Well, I appreciate you going through that. I think that’s the place where a lot of us get tripped up. So it leads me to the question. I have a sense of what your answer might be, but I have to ask it though, which is, this question of, [00:58:00] if girls are presenting so thing so differently than boys are a lot of the time, is this autism or is it something totally different?
Dr. Donna: Yeah, it’s definitely autism. What I think you’re asking is, if it’s such a subtle presentation, does it merit a diagnosis of autism?
Dr. Sharp: Yeah. Or are we even talking about the same disorder as a bigger question in there?
Dr. Donna: I think we are. Again, I use the DSM criteria for boys and for girls. I do not diagnose them differently at all. And I think the criteria makes sense if you know what to look for and how to look for it.
Dr. Sharp: I don’t want to put words in your mouth. Please tell me if this is off, but the way that you approach it is in the sense that these symptoms are there. They are just largely more subtle or slightly different than what we typically see in boys. It’s not that they’re not present. We just have to know how to dig for them and what they look like.
Dr. Donna: That’s exactly right. And one of the topics that would be really remiss if we didn’t talk about camouflaging and we’re talking about girls, right? That’s one of the reasons why the girls look more subtle. Their behaviors are more subtle is that their better camouflages than boys do. They do it more and they do it better.
First of all, camouflaging is the discrepancy between your inner experience and your outer behavior. And we all do it, right? Anybody who is a parent can tell you that they camouflage at times. I have three kids. They’re wonderful, but there have been many times in the past 20 years that I was saying some bad words [01:00:00] inside my head. My inner experience was maybe rage or just annoyance or whatever, but my outer behavior was calmly saying, no, that’s not what’s going to happen.
Any parent can tell you, and any test or any psychologist can tell you about camouflaging because there are days you have a bad headache or your dog died or you just don’t feel great, and yet you put on your mask for your patients and they can’t tell the difference; your outer behavior doesn’t match inner experience.
So we all camouflage, but people with autism have to do it more frequently. They have to sustain it for longer. It’s probably harder for them to do. The universal comment is that it’s exhausting from girls, especially and women. I’ve heard it being likened to doing math in your head all day long.
I’ve actually been thinking about it lately because I talked to a lot of therapists as you probably do, and I would say in the past month, no fewer than 8 to 10 therapists has said to me, I am so unbelievably exhausted. This Zoom therapy is killing me. It’s draining. It’s exhausting. It’s not sustainable. I’ve asked them all about it.
Honestly, I experience it too. I find these Zoom meetings exhausting. And I think that at least part of it is that the back and forth flow is different. The timing is slightly off. So it’s not always clear when it’s your turn to speak and when somebody else might be speaking. So two people start speaking at the same time, or there’s a little pause. There’s those little glitches. The eye contact is different. So like right now, you and I are on Zoom. I’m looking at your eyes becuse that’s what’s natural to me, but really, should I be looking at the camera, which would look more natural to you. So, we’re more [01:02:00] aware of this.
A lot of the therapists have said to me, I’m so much more self-conscious about how I’m holding my body, how I’m holding my face, the look on my face. It takes more energy to project myself. And it’s harder to read other people. So there’s all this stuff and it occurred to me, oh my God, is this what it’s like to have autism in the real world; to have all these little glitches to be thinking about these things?
I don’t know, but I did ask. I’m close with one young woman who has autism. I floated this theory up to her and she said, yes, yes, yes. That is exactly what it’s like for me. We’re all finding it exhausting. So I think camouflaging is unbelievably exhausting and more so for the women than the men.
Dr. Sharp: Yeah, I think you’re right on. I guess, embedded in that idea is the notion that girls on the spectrum are aware enough of what they “should be doing” in typical social interaction to mask it and fake it a little bit or a lot.
Dr. Donna: Right. Camouflaging is neither good nor bad. It’s a matter of knowing when you’re doing it, having control over it, being able to drop it and be your authentic self. So the idea is not to teach the boys how to camouflage or to get the girls to stop camouflaging. It’s all about balance for all of us. We want to be able to be our authentic selves and we also want to be able to get by in this world. So trying to find balance is so important.
Dr. Sharp: Yes. Gosh. You’re so right. I’m going to call back to my question from way back. Why are we missing all these girls?
Dr. Donna: We’re missing them because there are some really common mistakes that [01:04:00] clinicians make. Let me tell you some of my top ones that I see.
First of all, not even wondering about autism. We see this one all the time. It’s rare that I see a report where somebody missed autism, but they wrote, I considered the possibility of autism, but I ruled it out because A, B and C. It’s not even considered. It’s not even crossing people’s minds. So the first thing is we all have to have it on our radar way more. So whenever you’re working with a girl who has more than brief anxiety, depression, an eating disorder, social difficulties, you have to at least hit the pause button and wonder if there could be autism. It’s so important to start there.
Dr. Sharp: Can I ask you a question there, Donna.
Dr. Donna: Sure.
Dr. Sharp: Do you have any go to screening questions in your interviews just to hit on those most salient points that may pop and trigger more extensive questioning?
Dr. Donna: I do. I’ve given a list. We have three care managers at our practice that do all the initial screening. We’ve given them lists, which I can share with you. Definitely any social problems even if they didn’t start until middle school. Having been bullied. Definitely persistent anxiety or depression. Context blindness, which is a whole podcast in and of itself. That’s the whole separate thing. Chronic headaches and GI problems. Parents who have been chasing a diagnosis their whole life in this persistent sense of, well, we saw an OT when she was two and she had sensory integration disorder. And then when she was 4, her language was slightly delayed. So she saw a speech therapist, and on and on and on it goes; that sort of thing. That gives you a few, but I can [01:06:00] also send you a list.
Dr. Sharp: Sure. That’s great.
Dr. Donna: Other common mistakes that lead to girls getting missed: Letting prior diagnoses explain too much. We call this diagnostic overshadowing. Statistically speaking, these girls are likely to get another diagnosis first, usually ADHD or anxiety, and then people say, well, of course, she has no friends. She has social anxiety, right? Things like that. So don’t let prior diagnoses explain too much.
Another huge mistake that we see is letting “neurotypical behaviors” lead you to woo out autism. You can’t rule out autism just because somebody has good eye contact. You can’t rule out autism just because somebody has a sense of humor or just because she has friends or because she wants friends. We know that girls with autism have lots of “socially neurotypical behaviors.” None of that should be a rule out for autism.
Definitely relying too much on one test is a major problem. And everybody says it. I think we all agree that you should not rely too much on any one measure and yet I see it all the time. I don’t want to go down that rabbit hole, but I’ll say, you need several sources of information. One test is not going to cut it at all. And that particularly for girls with average to above-average intelligence, that particular test is not super sensitive. It just isn’t.
Forgetting to get the subjective experience of the girl is another common mistake. Getting the parents’ experience like the eye contact thing we talked about before is a good example. Really getting at her experience is so important.[01:08:00]Dr. Sharp: Can I jump in there for a second?
Dr. Donna: Sure.
Dr. Sharp: How have you found that works with younger girls say 5, 6, 7, where they may not have the vocabulary to describe some of their…?
Dr. Donna: That it’s obviously a lot harder with younger girls, but you can at least ask them your basic questions about when are you happy and when are you sad, that kind of stuff, and try to see if they can give you a little something. But of course, it is harder when they’re younger.
One great measure that I’m liking a lot is the CAT-Q for getting a subjective experience, at least for camouflaging. We can talk about the battery if you want to.
Oh, well, the last thing I would say is, as far as mistakes, I’ve heard some people say that they diagnose girls even if they don’t meet DSM criteria. And that makes me uncomfortable. That’s a slippery slope for me. And I’ve never had a problem. Like if I really think a kid has autism, if I dig long and hard enough, they will meet that criterion. I don’t know. For whatever that’s worth. I just think we have to be careful about that slope there.
Dr. Sharp: Agreed. Well, that relates to that question I think that maybe a lot of us are wrestling with, is this a real disorder or is it something different, that whole idea, right? Like if we’re straying outside the criteria, then that makes things a lot muddier.
Dr. Donna: Right. But I do think we have an opportunity for a paradigm shift with more of a focus on subjective experience and less of a focus on outer behaviors.
Dr. Sharp: I think that’s a good point.
Dr. Donna: Yeah. So if there’s going to be a paradigm shift, to my mind, it’s not, is this a different disorder? It’s, are we looking for it in all the wrong ways? It’s really [01:10:00] more about the inner experience for a lot of these girls.
Dr. Sharp: True. That’s well said.
Should we shift to the battery as a means? I’m aware our time is flying and there’s so much we could talk about, but I definitely want to touch on the battery because you’ve already mentioned the CAT-Q, which we do not use and I’m curious about that. I’m sure there may be other things that you’ve been able to rely on that might be newish to us.
Dr. Donna: Sure. Okay. To me, the foundation of a good social-cognitive assessment is a developmental history that is longer and more in depth than a typical one. For me, it’s always two hours. I don’t use the ADI-R. I have my own approach.
It’s very important to me to say that there are multiple goals for the clinical interview. I think it’s such an important point because it’s not just about collecting data. If you do it properly, you’re going to raise the parents’ insight. They’re going to see patterns. They’re going to notice things and you’re going to build trust. And you’re going to learn, not just whether or not this child has autism, but what does their autism look like? What are their strengths? What do we need to focus on?
Usually, by the end of the parent interview, which is the first thing I do, I’ve already got a list of recommendations going. I already know if we’re going to be focusing on sensory stuff or we’re going to focus on rigidity, or we’re going to focus on context blindness. There are just so many reasons to invest your time in doing the longer interview. I just think it’s huge.
Dr. Sharp: Yeah, I totally agree. We do two-hour interviews in our practice as well. And that is invaluable. Let me ask, and you may be getting to this, so apologies if I’m jumping the gun, but do [01:12:00] you mention at the end of that interview, like, let’s say autism was not on these parents’ radar, but you’re getting those pairs on the back of your neck standing up, would you mention it even at the end of an interview as a possibility?
Dr. Donna: No. And I’ll tell you why. What I do say all the time is, what’s your theory? What have you wondered about? Even if you’re not sure, I want to know what has popped into your mind? It’s so important for me to get a feel for where this parent is, both parents. Sometimes then they will bring it up like, oh, my sister keeps saying she has autism, but I don’t think so. Lots of times they won’t.
So I ask that way. I do not bring up autism at that point because I may still be doing more rating scales. I’m going to certainly be doing more interviews and I don’t want anybody on their guard like, Ooh, she’s looking for autism. I just want them to answer my questions and not be thinking about what I might be looking for.
Dr. Sharp: That’s fair.
Dr. Donna: Does that make sense?
Dr. Sharp: Sure.
Dr. Donna: And I also want to be able to… I have a very particular way I present it that seems to go well, and I want to move through my process because I know I can get them to see it if I collect all the data first and if I say it prematurely, I might lose them. They can be skittish.
Dr. Sharp: I am with you.
Dr. Donna: Let’s see. What else is in the battery? Documentation. I always ask for report cards back to kindergarten, regardless of how old the child is. I tell the parents, don’t sweat it if it’s disorganized and you have one from this year and one from that year. I don’t want it to be stressful. Just give me what you got because you can get a tremendous amount of information from early elementary school report cards when the child is older. Little things that were written in there that nobody really paid attention to.
Dr. Sharp: What are you looking for there?
Dr. Donna: Oh, anything. You see things like, Jane is working on conflict management [01:14:00] with her peers; little lines like that. Jane is doing so much better opening up to the other kids in the class- they don’t write that till the fourth quarter. One or two comments like that are no big deal, but you can definitely see patterns or you can see something and then call the mom back and say, I know you said first grade was uneventful, but the teacher wrote a few comments about how she wouldn’t sit in the circle at circle time. She really needed time to herself. Do you remember that? And then the mom will say, oh my God, I forgot about that. And then she’ll talk about it a little bit.
It’s just a whole different way to get information. I find it’s well worth it. Obviously, the public school report cards aren’t as helpful as a lot of the private schools that write the narrative. So I do that.
Rating scales. I think people want to do a general rating scale- either the CBCL or the BASC. I strongly prefer the BASC in general and for kids with autism. It’s way more sensitive. I love it.
Dr. Sharp: Agreed.
Dr. Donna: The social responsiveness scale is fantastic. I love it. It’s got gender norms. It’s got well worded items that are very sensitive with the girls, I think. This is one that I’m surprised how few people use these because they’re great. On Simon Baren Cohen’s website, he’s got all kinds of stuff for free.
The autism spectrum quotient, the AQ; there are three versions. There’s the adult version for 16+, then there’s the adolescent version that the parents fill out, and a child version that the parents fill out; far more sensitive than something like the SAQ. They’re really sensitive. I find them very useful. And then for adults, you also have the EQ on his site. So I give those almost all the time. And that goes from age 4 through adult, between the different versions.[01:16:00] What else? Self-report measures. I mentioned the CAT-Q. That’s The Camouflaging Autistic Traits Questionnaire. It came out in an article last year, maybe about a year ago, I think. And I thought, okay, maybe this is something. I’ll play around with it.
I actually gave it to almost every woman in my office, and some people in my personal life. And it was striking. The women who don’t have autism had scores far lower than the women who do have autism. And the scores were consistent with what the authors reported. So I’ve given it ever since and it’s really helpful.
I think I mentioned this psychologist in LA who called me yesterday for health on a case. She was feeling like, all the data is there, but I just don’t see it. The parents are reporting it but the teachers don’t see it. And I said, because she’s camouflaging. Give her the CAT-Q. This was at 8:00 o’clock last night East Coast time. And by the time I woke up at like 6:00 AM today, this psychologist had given the CAT-Q to this 16 year old, and gotten the results back. And her score was sky high. She is camouflaging out the Gazoo when she’s at school and she camouflaged in the psychologist’s office. So it’s very useful.
And then, of course, I do things for anxiety and depression. I ask in the CDI. Obviously the patient interview, the teacher interviews.
As far as tests, I divide tests into actual tests and activities that pull for autistic behaviors. So that’s the ADOS and the MIGDAS. I do little pieces of the ADOS. I have 1 or 2 activities that I like. I much prefer the make MIGDAS, but I don’t do the whole thing. Again, I do 1 or 2 parts of the MIGDAS that I like. And [01:18:00] I do my own little quirky things.
I always take a walk through the hallway with these kids on a break and have a “spontaneous” interaction with another staff member because they know how to act with me, the doctor in my office, across my desk, but when we’re just wandering the halls and we happen to run into my friend Patty, and she says, oh, the funniest thing happened to me this morning. Can they go with that? It’s a more spontaneous interaction. And the staff at my office know what I’m looking for. They know I want them to pull for reciprocity and see what happens. And it’s fascinating. So just doing things like that is really fun.
Dr. Sharp: I love that. We do that too.
Dr. Donna: It’s fun.
Dr. Sharp: Meet my friend. Hey. Yeah, that’s great.
Dr. Donna: And I love the social language development test. Do you guys use that?
Dr. Sharp: We don’t. No. I’ve heard of it, but we do not use it.
Dr. Donna: I love it. It’s definitely a lot more sensitive than tests I’ve used in the past. It’s quick and easy to give it depending on which subtest. My favorite subtest is one where the child has to just look at photographs of people and pretend you’re this person, tell me what you’re thinking. So they have to really get in someone else’s head and then they have to tell you why they’re thinking that. It’s super sensitive.
Again, this psychologist from LA with the girl who took the CAT-Q, I said, give her this subtest. It’ll take you five minutes. She gave her the subtest and this really smart 16 year old got 2 out of 12 right.
Dr. Sharp: That’s so telling.
Dr. Donna: That is 5th percentile. It’s so telling. It’s a great subtest. I love it.
Dr. Sharp: I like that you highlighted that. I feel like we struggle a little bit to find those measures that are sensitive enough to capture subtle presentations or bright individuals. And that’s a good one. I’m going to look that up. Great.
Dr. Donna: Yeah, absolutely.
Dr. Sharp: Cool. I feel like I have to ask. Is cognitive assessment [01:20:00] playing any important role in your process here?
Dr. Donna: It’s a hard question to answer because at my practice we do more or less complete neuropsychological assessments, more or less all the time. Sometimes, I’ll do just a social cognotive assessment if somebody just had a neuropsychological and the person missed the autism. And a lot of times, it’s helpful because there might be language problems or ADHD. You want to look for all of those comorbidities. You want to look for context blindness. So it helps me, but sometimes more than others. It’s helpful.
Obviously, you’re always looking for strengths too. And sometimes doing all of that gives you a whole lot of academic and cognitive strengths. And that’s just as important as finding the weaknesses. And anytime I write up a summary, I work really hard to make sure my list of strengths is longer than the list of weaknesses.
Dr. Sharp: I love that.
Dr. Donna: We can do that.
Dr. Sharp: Yes. Well, I wonder if we might wrap up by talking a little bit about feedback. You mentioned that you have a process that has seemed to work well, and I’m wondering if you’re willing to describe that a little bit.
Dr. Donna: Sure. Years ago, I used to give pieces of feedback first. I should say, for people who use the MIGDAS, my process is almost the exact opposite of Marilyn Monteiro’s. I love her process and I think it’s brilliant and wonderful. And if that works for people, I fully support them doing it. It’s weird that they’re two opposite approaches, but what they have in common is a focus on strengths. So I like that.
Anyway, what I used to do is talk about each separate piece of the puzzle for a while and then pull it together and say, so this is autism. And what I’ve learned over time is parents come in so unbelievably [01:22:00] anxious and they just want to know what’s the answer. What did you find?
Some of them are worried that we’re not going to diagnose anything because they’ve been struggling for so long. Others are terrified that we’re going to diagnose something. And I think, and also frankly, having gone through this myself as a parent more than once, I think people come in and it’s helpful to just put it out there right away and then explain it.
So I always tell parents, the minute we sit down, I say, here’s what we’re going to do. I’m going to start by talking about the problems, the things that brought you in here in the first place, then we’re going to talk about all of your child’s many strengths, and then we’ll get to recommendations. So they know what to expect.
And remember, the apple and the tree, if their kid has autism and ADHD, one of the parents is going to add one of those things. And so, having structure and predictability helps ease everybody’s anxiety. And then I put it right out there. I might say, this might surprise you, but I really think she has autism, and I want to walk you through what that means.
And then I have a one-page cheat sheet that I give to parents. I hand it to them then and there with the diagnostic criteria. And I say, we’re going to walk through this so you’ll understand why I came to this conclusion. I literally walk them through what I did with you today, and then I give them examples for each one.
And usually what’s happening in that process is they’re going, oh my God, would this fall in this category? And then they give me more examples and it’s all coming together and making sense. And so when we get to the end of that list, I say, so does this make sense? Do you agree with me? And the overwhelming majority of the time they say absolutely, even if it was the last thing they were expecting.
Then I give them a list of things that are not part of the diagnostic criteria but are common in autism and relevant to their child. So that’s where we might get into anxiety, ADHD, context blindness, and interception, that sort of stuff. And then we get to [01:24:00] strengths, which is the fun part.
Dr. Sharp: Nice. I love that. That’s the, how would I phrase it, Karen Postal method. She talks about that a lot. Don’t bury the lead is what she says. Just put it out there in the beginning and then spend the time walking through it. I totally agree with you. We’ve switched to that, I don’t know, a year ago or something, and I totally agree.
Dr. Donna: It works well.
Dr. Sharp: It works. You don’t keep parents in suspense. And I think it’s hard to keep track of the other way too because they don’t know where we’re going when we’re putting all these pieces together and they’re like, why am I at the executive functioning and emotional and this cognitive, what are we doing here?
Dr. Donna: Yeah, exactly. And the other way doesn’t give you as much time to process all their feelings about my child has autism. What does this mean? Where did that come from? You need to leave time for that. So I’m super comfortable with this method, but I just want to reiterate, I think the world of Marilyn Monteiro and her opposite method is also absolutely wonderful, in my opinion.
Dr. Sharp: Sure. Well, I really appreciate all this. Are there any resources you might point people toward? Anything that’s been helpful for you just to close?
Dr. Donna: Yeah. I can definitely give you a list for the show notes. I can give you a few good recent summary articles and some things written by women with autism like Jennifer Cook O’Toole that I really like. Definitely. Yeah, I can get you all that for sure.
Dr. Sharp: Perfect. I think the show notes will be pretty good for this episode. You mentioned that you consult with other folks around this topic. If people want to get in touch with you, what’s the best way to do that?
Dr. Donna: My personal email address on my website, drdonnahenderson.com, [01:26:00] firstname.lastname@example.org. And it’s just Dr. Donna Henderson. That’s fine. That’s probably the best way to get in touch with me. I’d love to love to talk about this stuff.
Dr. Sharp: Perfect. Okay. Well, this has been really good. It’s been action-packed. I think people are going to walk away with a lot of fantastic information that will maybe reshape some practices.
Dr. Donna: Good. Well, thanks for giving me the opportunity to talk about it. It was fun.
Dr. Sharp: Good. Well, like I said before we started podcasting, you may set yourself up for round two, with all these trails that we didn’t follow, but this is fantastic. That’s a great start. Thank you, Donna.
Dr. Donna: Right.
Dr. Sharp: All right, y’all. Thanks again for tuning into this episode with Dr. Donna Henderson. Like you could tell, Donna is very well versed in this topic. She speaks so passionately and eloquently about how autism is manifesting in girls and women. I took a lot away from this episode. I hope that you did too. Definitely check out the show notes for any other resources that we may have mentioned over the course of the podcast.
Like I said, at the beginning, if you are interested in a group coaching experience to help launch your testing practice or refine your testing practice if you have launched within the last few months, I would love to have you in the Beginner Practice Mastermind group. You can get more information and schedule a pre-group call to see if it’s a good fit at thetestingpsychologist.com/beginner. There’s a ton of information there. Check that out. And we’d love to have.
All right, y’all. When this releases, we are still in the midst of COVID 19, some things are starting to open up. There’s a lot of discussion in The Testing Psychologist Facebook group about how to do that, whether to do that, how to be safe. So [01:28:00] if you need some of that information, come check us out. If you’re not a member of the group, you can find it pretty easily by searching The Testing Psychologist Community on Facebook.
All right, everyone. Stay healthy, stay sane, and take care until next time.