268 Transcript

Dr. Jeremy Sharp Transcripts Leave a Comment

[00:00:00] Dr. Sharp: Hello everyone. Welcome to The Testing Psychologist podcast, the podcast where we talk all about the business and practice of psychological and neuropsychological assessment. I’m your host, Dr. Jeremy Sharp, licensed psychologist, group practice owner, and private practice coach.

Hey everyone. Welcome back to The Testing Psychologist. Today is a masterclass episode. If you haven’t caught the previous masterclasses, these episodes are a little bit different than the typical interview. On masterclass episodes, an expert in our field comes on to do a case presentation in a particular subject area. Today, I have Dr. Donna Henderson, presenting a case of an autistic adolescent girl.

Donna was a previous guest from episode 119, which was the second most downloaded podcast episode ever. She has a lot to share with us about this [00:01:00] particular subject area of autism in girls and women.

So let me tell you a little bit about Donna. Donna is a clinical psychologist. She earned her doctoral degree from the School of Professional Psychology at Wright State University. She then worked as a staff neuropsychologist and then director of an acquired brain injury clinic at The Gaylord Hospital in Connecticut.

After staying home with her three kids for a while, she joined a private practice, The Stixrud Group, in 2011. She currently specializes in neuropsychological evaluations for individuals with cognitive, academic, social, and/or emotional challenges, with a particular specialty in autism, of course.

Dr. Henderson is a frequent lecturer on the less obvious presentations of autism on autistic girls and women and on parenting children with complex profiles. She provides case consultation, particularly for mental health professionals who’d like to learn more [00:02:00] about autism.

A little shout-out, if you are interested in case consultation, you can reach out to Donna and find her contact information on her website, drdonnahenderson.com. Donna is likewise publishing a book later this year. If you’d like to get updates and announcements on the book availability, you can do so at her website as well.

A little bit of a disclaimer before I transition to the episode, Donna and I chatted after we ended the recording. This will make sense as you listen to the episode, but as we ended our masterclass, we want to make sure that it comes across and it’s very clear that not all of the problems were solved by this individual, this teenager, [00:03:00] receiving her diagnosis.

We want to make sure that everyone is well aware that getting a diagnosis does not solve all the problems and that this was just a piece in the process and hopefully a step in the right direction for this girl and her family but just to be clear that we don’t mean to present it like getting the diagnosis is a tying bow on the story and everyone rides off into the sunset.

Hopefully, I didn’t mix too many metaphors there and you get the picture, but there is a lot of great information to take from our discussion.

I will transition to this masterclass with Dr. Donna Henderson.

[00:04:00] Hey Donna. Welcome back to the podcast.

Dr. Donna: Hi, Jeremy. Nice to be back.

Dr. Sharp: Good to have you. I feel so fortunate that you agreed to come back and present some information in this format. Very grateful for your time and energy. I know people are excited to hear from you, your first episode was, it’s still the second most downloaded podcast episode ever.

Dr. Donna: What!

Dr. Sharp: Yeah, totally. So you are …

Dr. Donna: That’s crazy.

Dr. Sharp: I know, it’s wild. Honestly, it’s only behind the one that Susie Raiford did on remote administration of the WISC right at the beginning of the pandemic. So I almost feel like that was a very unique time-specific episode. I don’t know, you could [00:05:00] make an argument that you have the most popular episode on The Testing Psychologist. So we’re lucky to have you back.

Dr. Donna: Wow. I feel really lucky to be here. Thank you.

Dr. Sharp: Sure. So you’re going to be here in a little bit of a different format this time. Last time we did more of the typical interview style around autism in female-presenting individuals but this time we’re here for more of a masterclass format. We’re going to return to the original masterclass format from Stephanie Nelson from a year or two ago where it’s more of a case presentation that you’re going to share with us.

I’ll, of course, jump in here and there and ask clarifying questions and whatnot. I’m excited to hear about this case you have prepared for us and see where we end up. So I’ll turn it over to you to start wherever you would like to start.

Dr. Donna: All right. Thank you. I guess I’d want to start by saying that I’m in no way suggesting that my way of doing this is the only [00:06:00] way or the best way. It’s simply a way that has worked for me and the people I’ve trained. I’ll also tell you it was absolute torture picking a case because everybody’s so different. I had to think about what kinds of things I wanted to highlight and obviously, I’ve completely, de-identified the data to protect the client.

I’ll also say as part of that, even though I live in Maryland and I work in the DC area, this client happened to travel to see me. So they’re not from this area, just to further de-identify them.

So I’m going to call her Annie Jones. Annie was in 12th grade when I saw her last year. Usually when you present a case for case consultation, ideally you integrate the data first, but for this format, I think it makes more sense for me to provide the information in the [00:07:00] order that I received it. So I can talk about what I was thinking and doing it at each point in time. So I’m resisting the urge to just integrate it all. Don’t worry, I’m going to talk about how to organize it and integrate it at the end.

Dr. Sharp: Great.

Dr. Donna: Okay. The first contact was the initial phone call, which came in from Annie’s mother. She described Annie as a kind and friendly person who’s motivated and has a fantastic work ethic. So right off the bat, that’s all, just wonderful to hear.

Annie’s always been a great student, although an incredibly slow worker. The reason Mrs. Jones was calling now was that Annie was struggling with remote learning during the pandemic. I’m sure you got a lot of those calls.

Dr. Sharp: That sounds familiar.

Dr. Donna: Yeah, just a little. Specifically, Annie got overwhelmed by information. She was perfectionistic and she could be rigid at times [00:08:00] thinking there was only one right way to do things. None of these problems were new but they were more problematic than they had been in the past.

Annie had already been identified as having anxiety, ADHD, and probably depression. She had tried a fair amount of therapy and medication but nothing was helping. So they really wanted to get an evaluation to see what’s really getting in her way.

Mrs. Jones brought up a few other things during the interview but she didn’t bring them up on her own. These were in response to direct questions and she mentioned that there were chronic GI issues, and problems with sleep. There was a history of occupational therapy for sensory integration and some speech therapy at one point.

And then Mrs. Jones also mentioned that Annie generally got along well with others but she’s not particularly socially savvy and she’s had friends but not particularly [00:09:00] close friends, but again, none of this was the stated reason for the evaluation. It only came up with questioning.

So the next thing we do is send out a pediatric questionnaire. I like to have this completed in advance before I meet the client or the parents, in part because I don’t want to spend time in the interview on details like what school they went to or what medications they’ve tried. I want to save the interview time for the good stuff.

Dr. Sharp: So this is pre-intake.

Dr. Donna: Pre-intake, yeah, we call intake the initial phone call to set up the appointments. So the parent interview pre-meeting the client.

Dr. Sharp: Sure. Okay. Thanks.

Dr. Donna: The other reason I like to give this questionnaire in writing in advance is a lot of autistic adults in particular, [00:10:00] really like the opportunity to put their thoughts in writing, to put it all there, to take their time. They can write a lot of really rich information that would not necessarily come up during an oral interview. So that’s been a little side benefit for me of doing this in advance.

Dr. Sharp: Certainly noticed that as well.

Dr. Donna: Have you?

Dr. Sharp: Yeah.

Dr. Donna: It actually came up from research for the book. We’re just incorporating a ton of input from a lot of autistic adults for the book. That was one thing that came up a few times, it’s so hard for me in oral interviews to efficiently say what I’m thinking and talk about my experience, and to have the opportunity to do it in writing makes a world of difference for me.

Dr. Sharp: Sure.

Dr. Donna: So from the questionnaire, I had some very basic information. I knew that Annie lives with her parents and younger brother, pregnancy and birth were basically unremarkable except for some advanced paternal age. I think dad was maybe in his mid-40s when [00:11:00] she was born. Annie was homeschooled until high school and then she went to public school. It did sound like the community they live in has a lot of homeschooling families and that the mother did a really good job of providing both structured activities and unstructured opportunities for socializing.

I knew there was prior testing from 5th grade with a diagnosis of ADHD and that Annie was taking Strattera and Adderall. Emotionally, I knew that Annie had longstanding and persistent anxiety and then some increasing episodes of paralysis which were new, where she just struggled to get out of bed even to use the bathroom. She was isolating herself and she was on Wellbutrin. She had tried a few SSRIs in the past.

Socially, Mrs. Jones endorsed difficulty reading social cues on [00:12:00] my original questionnaire. She wrote in the comment section that Annie is not always aware of social cues and she has to tell Annie to read the room but she also made it clear that that’s not a major area of concern.

So at the same time that I sent out the pediatric questionnaire, I also sent out rating scales. I like to get those in advance too, so that I have time to review the items. I usually just go through with a yellow highlighter and highlight a few to ask the parents about at the interview.

Dr. Sharp: Can I ask you a question about that?

Dr. Donna: Sure.

Dr. Sharp: How do you know which rating scales to send out before you meet the person or parent.

Dr. Donna: There’s not a ton of variability for me. I’m always going to send the BASC, CBCL is another option there. I happen to like the BASC. I pretty much always send a BRIEF. If there’s any possibility that there might be some social concerns, I send an SRS. Those are my big three.

Dr. Sharp: [00:13:00] Okay. That’s fair.

Dr. Donna: So with Annie, the parent BASC was significant for hyperactivity, attention, anxiety, and actually was waterline for social skills. The parent BRIEF was elevated across the board. Just tons of concerns about behavioral, emotional, and cognitive regulation. The parent SRS was only a little bit significant. The T-score for social awareness was 65 and for repetitive and restricted with 60. So a little bit of elevation but nothing really extreme there.

I didn’t have teacher scales. This was one of the hardest parts of the pandemic, the teachers had only seen Annie remotely and so scales wouldn’t be valid.

Dr. Sharp: Yeah. It’s been so tough without teacher input or thorough teacher input maybe.

Dr. Donna: Right. I’ve been resorting to calling teachers that knew kids before the pandemic, [00:14:00] which is also not ideal. And that’s what I did for Annie. So I’ll talk about that interview later but I don’t have the teacher’s scales.

Dr. Sharp: Okay.

Dr. Donna: So what did I know so far after that initial phone call, the questionnaire and the rating scales? I knew that there was, it seemed like there was anxiety, depression and ADHD, and it was possible that that’s all there was to the picture. I knew that there were some social concerns but they weren’t front and center.

Autism did cross my mind at this point, not because of any one piece of information but because when I step back and look at the big picture, it felt like there might be a lot going on here from a young age. There was the persistent anxiety that didn’t respond to treatment and there was perfectionism, OT and speech and sleep and GI, and these are all things that can [00:15:00] co-occur with autism. And then the advanced paternal age was a risk factor as well. So it wasn’t on center in my mind but it was flipping around there.

I think what else crossed my mind was OCD possibly, because of the slow working tempo and the perfectionism, although Mrs. Jones hadn’t endorsed anything like compulsive behaviors on the rating scales. I think I wondered about a language disorder because Annie was stressed out by writing and Mrs. Jones had mentioned something about difficulty telling a narrative. So these were the things floating through my mind.

Dr. Sharp: Okay. Can I ask you a question about advanced paternal age? You mentioned 45. It’s been a long time, honestly, since I looked at this, but I feel like I remember “advanced paternal age” falling a little higher than that but I could be totally wrong. What’s the cutoff, so to speak, for advanced paternal age as a [00:16:00] risk factor for autism these days?

Dr. Donna: I don’t think of it as a cutoff. In my mind I have it, somebody is in their mid-40s or over, it’s a good question. I don’t know if there is a certain age that you have to think about it, but I think if either parent is at least in their mid-40s, it’s just something to note that it can raise the possibility of something going on there.

Dr. Sharp: Right. Cool.

Dr. Donna: I then did the parent interview. Unless it’s a very simple straightforward case where I’m not expecting anything complex, my parent interviews are two hours.

Dr. Sharp: Yeah.

Dr. Donna: You too?

Dr. Sharp: I love that. We share that. I do two-hour interviews and honestly cannot understand how anyone does less than a two-hour interview. It’s hard, especially those that stick to a strict hour because by the time you do pleasantries and paperwork and [00:17:00] policies, and then at the end, you’re wrapping up and scheduling and doing all that. You only end up with like 30 or 40 minutes of actual interview time. So I don’t know how an hour works.

Dr. Donna: I don’t know either. I don’t even do any of those. I do the social pleasantries. I don’t do any of the paperwork or scheduling at the interview. It’s just for the interview. If it’s a complex case, you need the parents to have time to sink into it and time to explore all the different possibilities that come up.

Dr. Sharp: Sure.

Dr. Donna: But I also appreciate that not everybody has that luxury, I’m in private practice and I’m very fortunate.

Dr. Sharp: Right. We’re fortunate.

Dr. Donna: So this parent interview was done on Zoom, which obviously less than ideal. Mrs. Jones came across as a valid reporter. She seemed to be very intelligent, very attentive to her children. They’re very detail-oriented. She seemed like a good historian.

Mr. Jones was sitting next to Mrs. [00:18:00] Jones but he never once looked at me. I think at the end of the two hours, if I asked him what color my hair was, he wouldn’t have known. He seemed to be doing something else and he mostly seemed oblivious to the conversation but he occasionally chimed in. So I knew he was paying attention because he would pop in once in a while with a comment or two.

I wasn’t sure what to make of that. It could just be a super busy day at work and he was trying to multitask. I found it interesting that he didn’t look at me at the beginning and say, hey, I’m so sorry. I’m multitasking right now. Nice to meet you. There was none of that sort of thing.

Dr. Sharp: Interesting observation. I’m always observing parents’ behavior just as much as what they are reporting or telling me about the kid.

Dr. Donna: Of course, it’s one of the reasons we love that longer parent interview because you’re getting to know who they are as people and what they’re bringing [00:19:00] both positive and maybe not as positive to the situation and where you might be able to affect some change, right?

Dr. Sharp: Sure. Okay.

Dr. Donna: So my parent interviews are divided into two parts. The first thing I do is simply have them tell me the story. I have them start at the very beginning of the child’s life and just walk me through and tell me what was going on at each stage. I interject with questions or to keep them on track, but mostly I’m just trying to get them into storytelling mood.

I find that this is a positive experience for them. It can be very cathartic. It can build rapport. It gives them that opportunity to go through it. I think it also raises their insight because it’s easy to forget things about our children’s early years and when you take your time and go through it, you start remembering more and more.

Dr. Sharp: Let me ask a really granular question. [00:20:00] How do you get them started with that?

Dr. Donna: Literally almost what I just said to you, I say, I just want you to start at the very beginning of Annie’s life and walk me through it. Tell me what was going on at each stage. You can talk about what was happening academically, socially, emotionally, funny stories, anything that you remember. Don’t worry about staying on track. If I feel like you’re off track, I will let you know. I always assure them of that. I’m trying to relax them and have them relax into the story.

And then we’re going to end up with why you’re here today. I’m going to have all of that context to really understand what’s going on today and then we’ll talk about that. People seem to like it.

Dr. Sharp: Yeah, I get that sense a lot. The parents are, whether they consciously say it or not, they have a great desire to [00:21:00] tell their story and know that someone has the full picture. That seems to be a fear a lot of the time, you weren’t going to know my kid as well as you need to, or as well as I do, or other providers haven’t asked those quite or taken the time, those themes come up a lot.

Dr. Donna: It’s a great point. And so when we come to a conclusion, whether it’s a diagnosis or a recommendation or whatever, I think they’re more likely to trust us because they saw that we did get the whole picture and we took our time and care about it.

Dr. Sharp: Sure. Great.

Dr. Donna: I just love hearing the story, getting the chronology. Having it told to me in that way, it brings it all to life for me.

So here’s Annie’s story. Here’s the story I heard from Mrs. Jones. Early motor milestones were fine but there was later OT for some vestibular and proprioceptive issues. Early [00:22:00] language milestones were advanced but Annie always had difficulty organizing language. So telling a story, getting to the point, her vocabulary was good but she would often start with the details and never get to the gist of a story.

The toddler years were noticeable for sleep issues. It sounded like there was good sleep hygiene but Annie took hours to transition from wakefulness to sleeping and then from sleeping to waking. It was significant enough that she had a sleep study at age five, which found delayed sleep onset and Annie benefited from melatonin ever since.

So then we get to the preschool and early elementary school years, a lot of parents rush through those years if there weren’t glaring issues, they want to jump ahead to when they perceive that the problem started. I often have to slow them down and encourage them to spend [00:23:00] more time on those years. And that was definitely true for Mrs. Jones. She was vulnerable to rushing through it because Annie had done well academically and behaviorally when she was young.

The short version was that Annie was this shy but happy kid who did well in school but the more we talked about it, the more I got a little bit of a different picture. Annie did go to a preschool, that was before she was homeschooled and the preschool experience was generally unremarkable, but Mrs. Jones did recall the preschool teacher saying that Annie didn’t know how to engage and play well with other kids and that Annie required a little bit more scaffolding than most kids did at that age.

Mrs. Jones also recalls that Annie complained about noise a lot and liked to spin sometimes when she was about four or five years old. She hadn’t marked any history of repetitive behavior on the rating scale. As we chatted more about it, this was a [00:24:00] memory that bubbled up, was to me, a good example of getting them into storytelling mood.

We talked about the early OT for sensory integration and the speech and Mrs. Jones didn’t remember a ton of details about those and that’s not uncommon but I did ask her for the documentation. I told her just anything you’ve got, any papers from those therapists, send to me and I’ll discuss those shortly.

Socially, Annie did engage in imaginative play by herself and with other children but she also tended to get lost in her own thoughts and just disengage from play at times. From kindergarten on, Annie had already started having anxiety, mostly around decision-making and performance. She also had a lot of phobias; elevators, escalators, heights, inclines, needles. There were just a lot of phobias and they were significant enough that Annie went for some [00:25:00] CBT.

When I heard that list, a few of them jumped out at me like escalators, heights, inclines. I wonder about the sensory piece, the balance piece, the ability to know where your body is in space. I wondered about the connection there.

Dr. Sharp: That’s interesting.

Dr. Donna: The other thing that came out about the early years was that Annie had chronic constipation and stomach aches, and that’s significant to me, maybe just anxiety but it’s also true that autistic kids are vulnerable to having early and persistent GI issues.

Dr. Sharp: And is that related to interoceptive weaknesses or unawareness or is there some more…?

Dr. Donna: I do think there is some research saying that autistics have a sensitive gut. Some of it might be related to [00:26:00] when people have limited diets. Although that wasn’t the case with Annie, she had a good diet. I personally think that autistic kids go into fight or flight frequently and they stay there for long periods of time because the world is so stressful for them.

And when you’re in fight or flight, your digestive system pretty much stops working temporarily. So if you’re constantly going into that state where your digestive system stops working, it makes sense to me that you’d be constipated and have stomach aches.

Dr. Sharp: Yeah, it makes sense.

Dr. Donna: I don’t know that I’ve ever read that anywhere. I think it’s just a Donna thing.

Dr. Sharp: We’ll take it.

Dr. Donna: Okay. Elementary and middle school, Annie really thrived with homeschooling. They didn’t homeschool for any particular need; it wasn’t Annie couldn’t handle school so we homeschooled. It was just a family decision and they did it for her younger brother as well.

There were a few concerns about inattention, excessive movement. Mrs. Johnson noticed that [00:27:00] Annie was a strong reader but she had some difficulty pulling out the main ideas and also that Annie seemed to really need explicit instructions.

So because of those concerns, in 5th grade, Mrs. Jones brought Annie for an evaluation and she was diagnosed with ADHD. I of course said, you’re going to send me that report. So I’ll talk about that report in a minute.

Socially, during the elementary and middle school years, Annie always had friends. So if I just said, she always had friends, yes. Nice friends, yes. Long-lasting friends, yes but she didn’t make friends easily and none of them were particularly close friends. She never actually had a best friend as far as Mrs. Jones could identify it. I always ask as we go through the chronology, who is her best friend and who is she close with them?

So Annie transferred to the local public high school for high school, and that was by [00:28:00] mutual agreement. I think Mrs. Jones was ready to stop homeschooling, Annie was ready to branch out a little bit. The school sounds like, I’m not familiar with it but it sounds like it wasn’t a pressure cooker school. It wasn’t a huge school and Annie was quite comfortable with that decision.

And right away, in 9th grade, she got into debate club and a competitive trivia club, and she made friends there. From 9th-11th grade, she earned strong grades. She seemed pretty happy but she was still incredibly slow and perfectionistic. She was in therapy on and off for anxiety.

And then in March of 2020 with the pandemic is when she seemed to become depressed. That was new. She had never been depressed before, she became really withdrawn. She cried, her working tempo got even slower. She spent more and more time in bed crying and isolating herself.

One day Mrs. Jones found Annie sandwiched in between her mattresses, [00:29:00] which is alarming to Mrs. Jones. To me, I hear sensory when I hear that. Mrs. Jones said that as, this set off alarms for me, that is weird, who sandwiches themselves in between her mattresses?

So at that point, Annie went back to therapy and the therapist wondered if her ADHD was getting in her way, she had never had tried medication for it. So her therapist referred her for medication and he saw a psychiatrist who agreed with the prior ADHD diagnosis and started Annie on Adderall.

I should say at this point, that during a parent interview, I take notes just in the order of the conversation but I also categorize my notes on the side. So I have a little side piece of paper or document, if I’m typing, that just has the [00:30:00] diagnostic criteria for autism, it’s mostly white space.

So it just says, interactions with space, then relationships with space, then non-verbals with space. When I hear something that might fall into one of those categories, I just jot it quickly there. So when I heard the thing about the mattresses, I just jotted mattresses in the sensory. It’s just a way for me to organize and keep track as we’re going along like, is autism something I need to consider here?

If I end the interview with a whole lot of notes on that page, then yeah, maybe I need to. If I end the interview with almost nothing on that page, then I probably don’t need to think about autism. With Annie, in the middle of the parent interview, it wasn’t screaming autism at me at all. Social skills were not a primary concern. Rating scales weren’t dramatically significant, no repetitive or idiosyncratic behavior had come up, no intense or unusual interests had come up. It wasn’t [00:31:00] off my list entirely but if you had asked me at that moment, I wouldn’t have placed it as likely.

Dr. Sharp: Sure.

Dr. Donna: But I wasn’t ready to rule it out because there were so many red flags in the early history. Actually, there was a fantastic article in The Clinical Neuropsychologist last year. I think the primary author was either Susanne Duvall or Kira Armstrong. I can definitely get you the citation if not the article itself.

They talked about this concept of pink flags. So if you think of red flags as something that clearly you would link to autism, like somebody who’s flapping or obsessed with train schedules, pink flags are things that are less obvious but still potentially significant indicators of autism like having passionate interests or having trouble keeping a conversation going or having alexithymia. So using their language, I was seeing a lot of pink flags. So I really wanted to do [00:32:00] my due diligence.

This is the second half of the parent interview, which is where I’m asking more pointed questions. I did this in the order of the diagnostic criteria for autism, at this point. I did other things as well but for the purpose of this interview.

When I asked about interactions, Mrs. Jones reported that Annie has always better with the adults, that she’s never initiated interactions with peers and didn’t quite know how to play with kids. So for example, when they would go to homeschooling groups and there’d be a bunch of moms and a bunch of kids, Annie was more likely to hang out with the moms than the kids. When her mother said, go hang out with the kids, she did but it wasn’t her natural inclination.

She did actively play with other kids but she also spent more time than her mother expected in parallel play. When Annie joins a conversation, she needs to hear every [00:33:00] detail that she missed and she gets really agitated if she misses something. So that’s something we’re going to circle back to in a little bit.

Mrs. Jones said, Annie, doesn’t pay a whole lot of attention to what other people might be thinking. She doesn’t feel a lot of peer pressure and that Annie seemed to enjoy being with people and socializing but then she’d be exhausted and wouldn’t do anything for days. So I would call that low social energy informally. So it seemed a lot for interactions.

When I asked about relationships, we already talked about the fact that Annie never had a close friend before 9th grade. And again, I felt like she had had ample access to other bright kids with similar interests. I didn’t think it was a lack of access situation. Mrs. Jones herself was surprised at Annie’s lack of close friends.

Annie also seemed to have low social motivation. She was always comfortable with the limited [00:34:00] social life. She never seemed to get lonely. She just didn’t have a lot of needs.

And then when I asked about nonverbal, sorry, were you can ask a question?

Dr. Sharp: No.

Dr. Donna: When I asked about nonverbal communication, Mrs. Jones said that sometimes Annie doesn’t notice that she loses her listener and that her mother frequently had to tell her to read the room. And so while we were talking about this whole social-emotional piece, Mrs. Jones mentioned that Annie has poor emotional vocabulary, that she’s never been able to talk about how she was feeling, and that this was in contrast to generally a very mature vocabulary. So this is possible alexithymia, which is not specific to autism but is definitely a big pink flag.

Dr. Sharp: Yeah, could you give a quick definition of alexithymia in case anyone out there is wondering what that is.

Dr. Donna: Sure. It’s when somebody has difficulty talking about their emotions, [00:35:00] putting a label on them and describing them. And to my mind, the physiology that underlies alexithymia is interoception. I wonder if we should spend a minute talking about interoception.

Dr. Sharp: Sure, if that fits for you.

Dr. Donna: I think it does because it’s so important. Most people think we have five senses and we have eight, of course, and those other three are proprioception, vestibular, and interoception. I think interoception is unbelievably important for us to know about, particularly but not exclusively for autism.

So interoception has to do with our ability to notice signals from inside our bodies rather than out there in the environment, and also to contextualize and assign meaning to those bodily signals. So interoceptive awareness is highly individualized, so what you experience as anxiety is different from what [00:36:00] I’ve experienced as anxiety. We all have unique interoception. There’s no right or wrong interoception but it is important for each person to understand their own interoceptive experiences.

We all have a range of interoceptive awareness but some people can be at the extremes of this range, so they can have body signals that are too big. I call it the volumes too loud sometimes. So they might be over-responsive to some signals and maybe there’s very sensitive to pain or heat or cold. The body signals can be too small, maybe they don’t notice signals of hunger or anxiety until they’re huge or body signals can be distorted; so not specific or clear enough, so they might feel off or icky but not know if they’re tired or hungry or sad, right?

Dr. Sharp: Yes.

Dr. Donna: I should say that when we talk [00:37:00] about the emotions for interoceptive awareness, I would divide them into two categories. We have affective emotions like anger and joy and anxiety and all of that, but also homeostatic emotions like hunger and thirst and pain and all of that. So interoceptive awareness is huge because it’s the basis for self-care like eating when you’re hungry and going to the bathroom when you need to or responding to illness. Like these kids who pee in their pants way longer than expected, I always wonder, do they not feel the urge? Do they not feel the wetness going on there?

Interoception is related to emotional regulation and I wonder if it’s the missing link to those kids who don’t do well with CBT, because if you don’t know you’re anxious, you don’t know to use all those fancy CBT skills you learned in therapy, right?

Dr. Sharp: Sure.

Dr. Donna: It’s definitely a basis for social connection because if I don’t know what frustration feels like for [00:38:00] me, how could I imagine what it might feel like for you to be frustrated? I’ve always wondered if interoception is a basis for empathy in that way.

Dr. Sharp: Yeah. It plays a powerful role in life in general.

Dr. Donna: Absolutely and definitely motivation too. When I have a kid who’s got low motivation, obviously, I wonder about other things too. I’ll think about depression, are they smoking a lot of weed? What’s going on there, but having low interoceptive awareness, because motivation is a feeling so it’s definitely in there.

So definitely I noted possible poor interoceptive awareness under the sensory category of my little cheat sheet when Mrs. Jones said that Annie had never been able to talk about how she was feeling. There were no repetitive behaviors. Mrs. [00:39:00] Jones felt there were no intense or unusual interests.

Flexibility, Mrs. Jones had written the word rigid in the comment section of the BASC. So I asked her why she had written that. So when a parent or teacher draws a conclusion like that, I always ask for examples because I need to know what made them use that word, because what they’re calling rigid or anxious or shy or rude or whatever they say, I might interpret differently.

So if a teacher says a child is a leader, I’m going to ask for examples, like what did you observe that led you to that conclusion? So let’s say it’s a 5th grader, they might say, oh, well, every single recess the child spends all of their time with the 1st graders organizing games and helping students who have no friends. So yeah, there’s some leadership qualities there but boy, that tells me something about how they spend their unstructured time, [00:40:00] not with their peers.

So I never take what somebody says, and it’s not that I’m doubting them, I just want to understand what led them to that conclusion. I want to hear the behaviors they observed more than their conclusion about it. So when we interview parents and teachers, that’s a lot of what I try to do.

Dr. Sharp: Right. It’s amazing what labels or descriptors people can put to the same behavior. People interpret so many different ways.

Dr. Donna: Right. Absolutely. Especially if you’re talking to people who have different cultural backgrounds, absolutely. So Mrs. Jones wrote rigid and when I asked her about this, she said Annie thinks that there’s only one right answer to things. I asked her for examples and she said, one day, Annie left a towel and some clothes on the floor and she also left dishes in the sink. Mrs. Jones said, you need to pick all of that up this minute and in Annie’s mind, it all [00:41:00] had to be done within a minute. So like really rigid interpretation of language.

I asked for another example, Annie had just turned 18 and she had this rigid idea that now I’m an adult and I have to know everything that adults know. She started having a meltdown thinking, I don’t know about retirement funds. Aren’t I supposed to know about retirement funds?

I asked for another example, Annie was trying to pick a college and she was obsessively researching the meal plans thinking that she had to know about that. She didn’t have a particular diet and her parents kept telling her, we’re going to get you the unlimited plan no matter where you go, stop looking at that. She just couldn’t get past it.

And so when I heard these examples, I did hear some rigidity but I also heard context blindness. To me, context blindness is a huge pink flag for autism. I wonder if we need to spend a minute [00:42:00] explaining what that is.

Dr. Sharp: Yes. I was going to ask you to elaborate on that just a bit when you say context blindness.

Dr. Donna: So we’ll take a relevant detour here and talk about that.

Dr. Sharp: Great.

Dr. Donna: I’m going to try to do it justice in just a few minutes, but it’s such an important concept. If people are interested in autism, if they’re going to read one book this year, I would recommend Autism as Context Blindness by Peter Vermaelen. It’s a wonderful book. It’s an academic book but it’s so beautifully written. It reads almost like fiction.

So let me just talk about typical brain functioning first and then this unusual type of functioning. Our brains don’t process information in isolation, we process information in context, and this is essential because there’s nothing in the world that’s absolute. Everything is ambiguous. We constantly use context to [00:43:00] predict and understand the world. Everything we see, we hear, we read, we experience, we rely on context to understand it.

Let me give you some examples of how nothing is absolute. So what is red lighting?

Dr. Sharp: Stop.

Dr. Donna: What if you’re walking across the street and you’re halfway there and it turns red?

Dr. Sharp: Oh, you should keep going and finish crossing the street.

Dr. Donna: Right. Exactly. Nothing is absolute. If somebody holds up their hand to you, what does it mean?

Dr. Sharp: Stop, maybe. I don’t know or shake my hand.

Dr. Donna: Yes, hi-five, stop talking, hello, goodbye, five.

Dr. Sharp: All of a sudden, am I getting the right answer here?

Dr. Donna: Well, that’s the whole point. There is no right answer. What if I say, we’ll talk about this later? Does that mean five minutes, two hours? Does it mean never?

Dr. Sharp: Great question.

Dr. Donna: What does it mean if my heart is pounding? I don’t know. Am I about to do something exciting or [00:44:00] scary? Is it okay to lie? It depends. How close to someone should I stand? How much eye contact should I make? How should I greet someone? Do I capitalize the word, what? It just could go on and on. We use it constantly.

And then there’s layers upon layers of context. So if you see a drop of water, context instinctively automatically tells you, is it dew? Is it raining? Is it sweat? Is it a leaky faucet? Is it a teardrop?

Let’s say it’s a teardrop. Then context will tell you what type of teardrop, by the context of the conversation of what you know about that person, what you know about what makes you cry. So there are all these layers of context and your brain uses all of this very automatically and intuitively and subconsciously and quickly to make predictions and to cope with the [00:45:00] unbelievable amount of input that’s coming at us all the time.

So let’s call this top-down processing and it’s what most of us use to interact with the world. It’s a very efficient way to move through the world, but some people rely more on bottom-up processing. They are not as sensitive to context first. They are more detailed thinkers.

I should say, if a neuroscientist was listening to this, they’d probably be horrified and say that they’re way oversimplifying because it’s not as linear as I’m describing it. Of course, we all use top-down and bottom-up processing, but the top-down is faster for most of us and guides the bottom-up.

And so for the people who don’t do the top-down, who don’t see the context as easily, Peter Vermaelen calls this context, blindness. Of course, they’re not actually blind to context. They’re just not as sensitive to it. Also it’s not a [00:46:00] super neurodiversity affirmative term. I don’t like it from that point of view but I’m going to use the term for the remainder of this conversation because I don’t have anything better.

So if somebody has context blindness, they’re going to look like they’re a very slow processor. They may be a slow processor, but they’re also processing a lot more information than the rest of us are. So like right now I’m looking at you, mostly, I’m looking at your movement, you’re nodding your head and what your eyes are doing. I’m ignoring what your microphone looks like, what color your shirt is, what type of earbuds you have, what type of lighting, what slimeball color in the background. I’m ignoring easily 200 little details right now and my brain doesn’t have to spend any time or energy on those but if I was taking in all those details as so many autistic people do, it would just take me a lot more time to interpret what’s happening.

People with context blindness are [00:47:00] vulnerable to missing the chest and focusing on minor details, even irrelevant details. They have a lot of difficulty knowing when and how to generalize rules. So they might overgeneralize. The best example I ever saw of overgeneralizing was this young man I worked with who had been kicked out of basic training for a whole lot of insubordination.

One example was, they were walking in formation, I guess you call it and he broke formation to pick up a piece of litter on the ground. The drill sergeant was screaming at him and he said, yeah, but there’s litter on the ground. You’re supposed to pick up litter. It’s bad to litter, like overgeneralizing.

You can also under-generalize rules. Like if a kid does the same math problem or the same type of math problem, say they do four problems and they got the hang of it and then the next problem is also slightly different and [00:48:00] they’re stumped and they can’t do it because they didn’t generalize the rule. We use context for all of this.

So if you have context blindness, the world is definitely a harder place. It’s going to take a lot more time and energy to move through the world. I should say, there are advantages to this style of thinking. Those of us who are more context-sensitive don’t tend to notice details as much so people with context blindness are better often at detailed thinking.

So with Annie, I heard a lot of signs of context blindness. Mrs. Jones said it was hard for her to start with the big picture and she jumps right into the details. When she wants information, she needs it as detailed as possible and she gets agitated if she’s missing something. For instance, they were doing Annie’s taxes because she had a little part-time job and she felt to me to read [00:49:00] every word on the tax form and understand all of it. Even her father kept saying, adults don’t even do that. Nobody does that but Annie felt like she had to.

When Mrs. Jones taught Annie to say, thank you and she was younger, Annie thanked her for every tiny little thing; thank you for setting the table. Thank you for the chicken. Thank you for the rice. Thank you for the piece. Thank you for putting salt on the table. She could thank her mother 30 times in an hour, overgeneralizing the rule.

When I interviewed a teacher, she said everything is equally important to Annie. She can’t prioritize. A big essay is the same as a minor assignment. I have more examples but I think you get the idea. Just real difficulty getting the gist, getting the context, getting stuck on details, right?

Dr. Sharp: Yeah.

Dr. Donna: So context blindness is a good example of something that’s not part of the diagnostic criteria for autism but is often part of the picture. [00:50:00] Back to the parent interview, just to end it up, I asked about family history and about Annie’s strengths. Family history, mom’s brother has never been diagnosed with anything but is described as socially awkward. He doesn’t know how to relate to people, even family members and it takes him three hours to shower and get ready in the morning. So I have no clue what’s going on with mom’s brother but autism is possible, right?

Dr. Sharp: Right.

Dr. Donna: On dad’s side, there was a paternal cousin in her 20s who’s described as brilliant but unable to finish college and had tremendous social anxiety. So I don’t just ask about what’s been diagnosed. I have mom and dad each tell me about your family even your extended family, whether or not somebody was diagnosed, just anybody who’s quirky, who’s had struggles.

And dad himself is an IT guy who said he has a lot of sensory [00:51:00] sensitivities. He feels that he’s very similar to Annie. He needs encouragement to socialize and he had difficulty making friends when he was younger. So that one away; the social presentation and I certainly starting to wonder about the family connections there.

I asked about trauma history and family history of trauma. There was nothing. And then finally, we went through Annie’s strengths. I always like to end the interview on that positive note. I’ve been noting strengths as we go along but I like to explicitly ask about it. Annie had tons of strengths. She’s willing to try things in order to get better like therapy or medication. She’s an extremely hard worker, intellectually curious. She likes to be helpful. She’s good with younger kids. So there was a whole lot there.

So now that I had dug deeper into the parent interview, I definitely had more reason to wonder about autism, right?

Dr. Sharp: Yes.

Dr. Donna: So then I did the document review and [00:52:00] collateral interviews. Ordinarily, I tell parents to bring in every report card. I don’t care if it’s disorganized and you have one from this year and two from that year, just bring in anything you’ve got. It was limited because Annie had been homeschooled.

Ordinarily, I would go through all of those, also ordinarily, I talked to prior teachers. So for an 18-year-old, I still will try to talk to a 4th or 5th grade teacher. Teachers are amazing people. I have never once, not once had a teacher say, I don’t remember that kid.

Dr. Sharp: It’s wild.

Dr. Donna: Isn’t it?

Dr. Sharp: Yeah.

Dr. Donna: I barely remember yesterday, teachers amaze me.

Dr. Sharp: Yeah. Agreed.

Dr. Donna: The OT summary report, Annie had OT from ages 4-9. That’s a lot of OT. The OT reports that it was due to concerns about sensory processing which interfered with social interactions. At [00:53:00] the time, the parents reported, this is documented by the OT, that Annie would isolate herself even with playdates at home. And then Annie did not seem to realize when she was hungry, thirsty, tired, cold, or in pain and the OT ends and that’s interoception. The OT documented differences in auditory, vestibular, and tactile processing.

I also saw the speech therapy summary that at ages 7-9, Annie was described as engaged and animated. During the first session at age seven, Annie got stressed out and squatted on the floor and rocked in place. The speech therapist noted that Mrs. Jones reported this is typical behavior when Annie is stressed.

And what’s key about that is that mom said no to all my questions about repetitive behaviors and on the rating scales. This is why it’s so important for us to not rely on one rating scale or [00:54:00] one question but to gather information in lots of ways.

The speech therapist also wrote that Annie struggled with flexibility and that she had trouble with even slight variations in things and that the mother had also reported that this was an issue at home. The speech therapist wrote Annie had difficulty discerning information that is not relevant, for example, what the back of the bookcase looks like. And that context blindness again. I don’t know what context that came up but that was what the speech therapist wrote for her example.

The speech therapist wrote, Annie had some difficulty keeping a conversation going and responding to other people’s cues. And so that was something they worked on in therapy. Mrs. Jones didn’t remember any of that. She told me when I asked that the speech therapy was for the organization of language and nothing else. And I think she was a valid reporter. We just forget.

[00:55:00] Dr. Sharp: Sure.

Dr. Donna: Prior testing; Annie had testing in 5th grade because of mom’s concerns about attention and getting the gist when she was reading and needing explicit instructions. Remember, all Mrs. Jones remembered was the ADHD diagnosis. I don’t know if there’s ever been research but there are any graduate students out there looking for a dissertation topic, I think it would be fascinating to know what people remember about our reports about their children six months later, five years later.

Dr. Sharp: Yeah, that’s great. That’s such a great point. I don’t know of any research either that I can pull out that specifically addresses that. That’d be a great project to start.

Dr. Donna: Because parents often misremember things, diagnoses, recommendations, all of that. Anyway, this [00:56:00] report said during all three testing sessions, Annie had difficulty with boundaries, like trying to turn the examiners’ pages and she asked unusual questions about the test manual. By the third session, the examiner asked Annie to imagine that everyone has a bubble around him and we shouldn’t pop their bubble because that is intruding on their personal space.

Dr. Sharp: Okay.

Dr. Donna: This doctor wrote, and I’m going to quote, “It is my impression that she has difficulty with reading nonverbal cues, taking perspective of other people, and understanding and responding to the impact of her behavior on other people”. And there is no evidence at all that this person considered autism as possibility.

I don’t know about you, Jeremy, but I see that all the time, that there’s just no evidence that it even crossed someone’s mind. Sometimes I get a report that says, I thought about autism and I ruled it out because of A, B, and C, and then fine. Great. [00:57:00] But I think a major issue is that we’re not even considering it as a possibility.

Dr. Sharp: Right. People have their biases in their lenses that they looked through, for better, for worse. But yes, of course, looking back on all this data, it’s like, oh, there’s a lot of pink flags and some red flags.

Dr. Donna: Absolutely. I’ll be the first to say that if I read a report that I wrote 10 years ago, I’m sure I get horrified and I’m sure I’ve missed autism. I think we’ve all gotten better about it but it was pretty glaring there.

So I also interviewed one of Annie’s prior teachers who had seen her live and she said Annie was one of the most careful and conscientious students she’s ever had. Just an absolute pleasure. The only thing she said was that Annie doesn’t decide what is or isn’t important, that she includes every little detail in her notes to the point that you can’t see the big picture, there’s that context [00:58:00] blindness. And then I interviewed the therapist who did not see any evidence of OCD or trauma.

So now I’m definitely thinking more about autism and then I finally get to meet Annie. It’s like I know everything about her and I haven’t even met her yet. I got to see her in person, which was fantastic. She was so delightful. I liked her instantly. She was pretty and well-dressed, she was vivacious, warm, polite. I just liked her immediately.

Very intelligent right off the bat and this is such an important point. If I had met Annie socially, I would never ever have wondered about autism. I have to constantly check myself to rule out autism just because someone is warm and engaging. I have to remind myself not to be influenced by how [00:59:00] charming a person can be.

Dr. Sharp: So this to me raises that question; you know what question I’m going to ask, I’m sure. If someone can come across so charmingly and engaging and let’s say, neurotypically, maybe for lack of a better word. Is that truly possible, can someone be autistic and pass so well?

Dr. Donna: Yeah. Right now I’m literally imagining thousands of autistic adults, mostly women, screaming yes. Yes, we can and it’s costing us so much. Absolutely, 100%. I think the autistic community has been very vocal about this. Researchers are catching up. There’s a great article. I can send you the citation for it. This was a few years ago written by Meng-Chuan Lai [01:00:00] and Simon Baron-Cohen about the lost generation of autistic adults and how it can be very hard as somebody matures and gets better and better at camouflaging, to see the autism except that their anxiety and their depression just keeps growing.

Definitely, when you see Annie’s test results and her report of her subjective experience, that will also become very clear to you in this case. There is just such a huge difference between the external presentation and the internal experience. As psychologists, we have got to constantly fight against that instinct that I’ll just know if someone’s autistic. I fight against it all the time and just look at the data.

Dr. Sharp: Right. I think I appreciate you talking through that. I have to ask that question because I know people have that question. [01:01:00] It can be difficult to reconcile those things for us; these different presentations.

Dr. Donna: Yes. For me as well, even doing this all the time, it’s a constant thing I have to struggle against. Behavioral observations; the ticking of the clock was a distraction. I had to remove it from the office for her. Her language was super fluent, fantastic vocabulary but when I asked her to talk about emotions, she was way less fluent.

Her eye contact was really good. It felt natural. She was super animated. Lots of gestures. A few of her gestures were odd and I couldn’t put my finger on it. There were just a few moments where I was just like, what was that but most of them were perfectly natural.

Annie was really chatty. She missed cues at times when I was trying to interject. She was not [01:02:00] reciprocal when I tried to make it a conversation. She would pause. She would listen to me and give me great nonverbal cues that she was fascinated by what I was saying and then when I stopped talking, she would then continue to talk as if I hadn’t spoken at all. So if you were watching the conversation but not listening to it, you would think, well, there’s some good, turn-taking, there are some nice nonverbals happening, but we were not having a reciprocal conversation.

Annie did well on effort testing and she seemed to care a lot about performing well. She was not attached to any outcome, I should be clear, neither Annie nor her parents were thinking about autism as a possibility here.

What was most memorable about her was her incredibly slow working tempo, which was due to her tendency to get lost in all of these irrelevant details. So back to context blindness, I saw it everywhere. I saw it in Annie’s constantly [01:03:00] asking for more clarification than most students ask for. So when I asked and I’m changing, so psychologists who are listening to this, they’re going to say, wait, where are these questions from? I’m changing them to protect the privacy of the test, how are valley and a mountain alike. Annie wanted to know, well, how high is the mountain? Irrelevant, right?

When we did Matrix Reasoning, Annie asked, do the numbers below mean something? Are they part of the puzzles? Whereas most students instinctively know they aren’t.

Sentence fluency was brutal. She really struggled because getting through the demo items, an apple is blue. Well, you can make an apple blue. And so I told her very explicitly, no, we’re looking for the most typical occurrence, answer how a kindergartener would answer. It’s not trying to trick you. She persisted that there could be a blue [01:04:00] apple somewhere in the world.

And this kept happening. A man has two legs while a man can have one leg. A penny is round. Well, what does it mean by round? The sides are round but the top is flat. If a kid asks one of these questions, okay, whatever, but it was over and over again.

For similarities, I assume other people do what I do, which is I’ll ask the full question for the first new items, how are blank and a blank alike? But after doing that four or five times, I’ll just say the two things, I’ll just say, light and candle, and kids know what I’m asking. There was this long pause and Annie said, what about them?

Self-report measures were brutal for her. She asked clarifying questions about almost every item. I keep the light on at night; well, when I’m sleeping or when I’m awake. I worry about what other people think of me; does that [01:05:00] include at school? Is that at home? I feel sick to my stomach; does that include worrying or just when I’m actually sick?

Dr. Sharp: So many details there.

Dr. Donna: She never instinctively got the intent. She had to think her way through every possibility for each question, it was exhausting for her and frankly, for me as a tester. She also provided a lot more clarification than most students do. So on a writing prompt on the WJ, she was asked to write a main or topic sentence for a paragraph about sports and she wrote: Swimming, baseball, soccer and tennis are the most popular sports among elementary school kids. Great sentence but she wrote an asterisk at the end of that sentence and then at the bottom of the page wrote, data not confirmed. I made it up to fit the prompt.

Dr. Sharp: Just to be clear.

Dr. Donna: Just to be [01:06:00] clear.

Dr. Sharp: Yes.

Dr. Donna: All right. So you get the idea, lots of context blindness. Now I’m going to circle back to your question about if she doesn’t seem autistic, can she really be, and the internal experience. So when I asked Annie about her internal experience, these are some of the things that I heard; conversations are draining. My brain is working twice in the conversation, taking in and understanding and responding to what everyone is saying, but also thinking about what I said and how everyone reacted, and what I’ll say next and how is this the same or different from other conversations I’ve had. And if I have it again, how would it go? It’s a lot of work.

She even does this with family members at times. She’s always still out of step with others. I think that was from the SRS. So part of interviewing, of course, is asking people about their responses on reading scales.

Annie said when she was younger and had to be in social situations, I wanted to be as [01:07:00] far away as possible. Having to interact with other people, even people that I knew when I went to birthday parties, it was like, how am I supposed to talk to them? Starting a conversation, continuing it, does another person join? What do I do if another person joins? What if they lose interest? How does a conversation start? How does it end? It felt like everyone else knew how to do this but I didn’t.

Annie talked about being misunderstood at times. She said if she saw someone for the second time in a day, I’ve heard a few autistic kids talk about this, like if I see someone in the first period, and then I see them again in the third period, I don’t know if I’m supposed to say hello to them again or not. What’s the rule? And so she decided not to, and then people would get upset with her because they thought she was ignoring them.

Annie said, as far as friends, that she has friends now but she wasn’t good at making [01:08:00] friends when she was younger and that she found it all confusing. She said, my mother used to tell me to have an open face, but I would do that and still no one would talk to me. And so I felt like I should have made friends and I didn’t, she wasn’t upset by this. It was very cognitive.

Annie told me that she has rarely if ever felt lonely. Relationships felt effortful to her and not worth the effort. And not in a depressed I’d given up way, just like I don’t get lonely. I’m good. I like my own company. She’s had crushes but she’s never dated and doesn’t really have much interest in dating.

Dr. Sharp: Can I back up just a little bit and ask you a quick question, Donna? Just for the sake of discussion and sorting through the case, you mentioned a lot of things that I think could be construed or grouped under the umbrella of social anxiety. What are you hearing that distinguishes, and maybe I’m leaping ahead, if that’s the case we can leave it but [01:09:00] what’s jumping out to you that might be different than social anxiety or just anxieties?

Dr. Donna: A major difference, obviously, the overlap is anxiety in social situations. In social anxiety, that’s the core issue, in autism, the anxiety is a result of confusion or sensory issues or flexibility challenges or all of the above. And so understanding the entire person, if all those other things are there, then it’s not just social anxiety. And Annie was clearly expressing confusion.

Another thing I look at is just the pattern; socially anxious people are generally fine with their family. They’re not socially anxious with their siblings or with their parents. So if parents and siblings even close friends are potentially giving me feedback about their interaction or what it’s like for them, then I think that’s really significant.

[01:10:00] Another thing that might differentiate them is public speaking. People who are socially anxious often have a really hard time with public speaking, like giving a talk in front of a group of people. A lot of autistic people do really well with that, in theater or giving talks because you don’t have to be reciprocal and they’re not anxious when they don’t have to be reciprocal.

And then socially anxious people who are not autistic won’t meet the repetitive restricted criteria. So if you have a socially anxious person who meets the repetitive restricted criteria, you need to at least be thinking about autism.

Dr. Sharp: Yeah. Right. Thanks for talking through them.

Dr. Donna: I guess the only other thing about the social pieces that I asked Annie, as I always do, what’s eye contact like for you? Remember, her eye contact looked great to me. She said, I hate eye contact. I don’t know why, but it feels really uncomfortable for me. [01:11:00] I used to not look people in the eyes, but somewhere along the line, it was brought up to me that it’s rude not to look in their eyes. So now I have to remind myself so that I don’t look weird.

When we talked about emotions and I should say, Annie has a vocabulary at the 99.6 percentile. So no vocabulary problem there, her vocabulary is better than mine, for sure. She could not express how she experiences emotions in her body. So when I’m looking for interoception, I want to know from them, what things feel like in their body.

And so if they give an answer like, well, when I’m anxious, I start moving around a lot. That’s not what it feels like in your body. It’s what you do. So when I asked her, what does anger feel like to you? She said, that’s a very hard question to answer. I don’t know how to explain it with words. I feel it in this part of my body and she [01:12:00] pointed to her face. Like in that moment, she didn’t even say face.

When I asked her how anxiety feels in her body, she said, these are specific physical feelings that I know but can’t describe or explain, it’s in this part of my body, pointing to her abdomen. When I asked her about hunger, she said, often I don’t realize that I’m hungry. I feel like my stomach needs food but the emotions that come with hunger, I tend to feel on my skin. So that’s a lot of interoception alexithymia stuff from a person with an amazing vocabulary.

Dr. Sharp: Yeah.

Dr. Donna: So sensory stuff; I don’t remember Mrs. Jones recording current sensory issues. And that’s not uncommon because as people age, they tend to show their sensory problems less and less to those around them and it becomes an internal experience. So it’s definitely something to explore with the client even when the parents don’t highlight it as a [01:13:00] current problem, and I’m not going to read everything Annie said, because we’ve talked for a long time about lots of sensory stuff, but she said, I need more pressure on my skin than I get. When I go to bed, I want something to squish me down. Sometimes I get between the two mattresses with my weighted blanket on top.

She described light sensitivity; often I squint a lot because it’s too bright. I work better in the darkness with this little light as possible. She talked about difficulty with textures and here’s the part I want you to hear. She said, in public, I just suck it up and feel uncomfortable and can’t really think about anything else.

So let’s talk a little bit about test results. My big four for an 18-year-old, as far as self-report measures for social stuff are the AQ, RAADS-R, the CAT-Q, and the SRS. So the AQ is the Autism [01:14:00] Spectrum Quotient, which was created by The Autism Research Center, Simon Baron-Cohen’s group. Annie got a score of 29, which is a significant score.

The RAADS-R, Annie also got a significant score. One thing I like about the RAADS-R, I like that most of the items aren’t outdated or judgemental, there are a few that I don’t love, but most of them are okay. I find it to be really sensitive and specific in terms of matching my clinical judgment. I like that it allows people to respond to each item like true now. And when I was young true, only when I was young, true, old or never, true, it gives some flexibility that way.

The CAT-Q, I think you and I talked about last time, again, is not a test for autism but it’s a test for camouflaging, which is very common with [01:15:00] autistics and Annie’s score was 139, which is definitely a significant score. That measure autistics average around 120 and non-autistic around 87. So 139 is a significant score.

So for testing, I didn’t do a ton of social cognition testing in part because we don’t have a ton of great social cognition tests and in part, because I already felt like I’ve got a lot here but I gave her Affect Naming from the Advanced Clinical Systems test. On that test, somebody just looks at photographs of people and has to say what that person’s feeling; they’re happy, they’re angry, they’re sad. It’s not very hard to do. She was at the 75th percentile.

The test I gave that I love, and if somebody is going to get one new test, I would recommend this one, is the Social Language Development Test. Do you know it? Do you [01:16:00] use it?

Dr. Sharp: No, we don’t use it. Let’s hear about it.

Dr. Donna: Okay, good. I really want you to use it. It’s a great test. There is two versions. There’s an elementary school and an adolescent version. The adolescent only goes up to age 17 and 11 months, but I do use it for adults. Obviously, I can’t score it, but I think it’s compelling if somebody gets 0 out of 12 correct on a sub-test. And there are age equivalents too, for the raw scores. I really need the people who made the Social Language Development Test to do an adult version.

Dr. Sharp: If you’re out there listening…

Dr. Donna: Please. Annie’s two months older than the highest normative group but I scored her anyway. On the Making Inferences subtest, which is a brilliant subtest, a client has to look at a picture of a photographed person and pretend [01:17:00] you are that person and say what you are thinking.

So it’s not as easy as saying they are angry. You have to get in their head and be in their head using the cues that you get. It is brilliant. You also have to identify what you see on their face or in their body language that told you what they were thinking. I find it to be very sensitive to people having difficulty getting in someone else’s head. I love it. Annie got 4 out of 12 correct, which would have placed her at the 16th percentile and her IQ is about 99th percentile so that is significant.

I also look at what somebody is like when they’re taking that test; if they’re slower, if they’re less confident, if they get frustrated, all those things. If you get it, give it to kids where there are no social concerns too, because it’s good to get that frame of reference.

Dr. Sharp: Sure. [01:18:00] I’m going to check that out. I think I’ve seen it like another, anyway, I don’t have to tell that story. I think I’ve seen it. We just don’t own it and use it.

Dr. Donna: It’s not that expensive and I met a group practice and we all absolutely fight over that test on a regular basis. Mostly the Making Inferences subtest. There are a few other subtests I like, but it’s that sub-test, I think it’s so brilliant. I love it.

I often give a few cards from the Roberts as well. Part of that is the interpretation of body language but part of it is getting at the good language sample and a good storytelling sample of somebody’s narrative and coping with a more ambiguous task. I didn’t do that with Annie. It took us a long time to get through the regular battery with Annie because of how slow she was so I started cutting things.

At the end of a clinical interview, I always say to clients, I’ve asked you all these personal [01:19:00] questions, I really appreciate you answering them and now I’d like to invite you to ask me a question about myself, which is from the meekness. I think it’s brilliant and it’s a lot of fun and lots of autistic clients might pause and say, no, I have no questions and have no interpersonal interest and not even think about, all right, I guess I’ll be socially appropriate and ask her something even though I don’t care or they might ask unusual questions. I had a girl last week pause and say, do you always wear shirts with flowers on them?

Annie asked me a fantastic question. She said, is your work rewarding but she only did this after first saying, oh, no, when I first posed the invitation and then there was a 23-second pause as she tried to figure out what to ask me.

Dr. Sharp: Oh, interesting. Okay. That’s fair.

Dr. Donna: [01:20:00] It’s a great question. I’m 99% sure, I got that from Meekness. Of course, I did some emotional screening stuff; I did the MASC and the CDI. I didn’t do an MMPI, which I often would do, but I thought that would send her over the edge since the BASC took her three hours.

Dr. Sharp: It would take forever.

Dr. Donna: Right. It came out, of course, she was anxious. She was depressed. I asked her about trauma and no history of trauma and just really briefly other test results. She did fine, on effort testing, her WAIS full scale IQ was really high. Her VCI was 141, PRI 136, working memory and processing speed were both 105, language testing was all rock-solid, no language problem. Memory testing was all super-duper high commensurate with her VCI. Her Rey was absolute [01:21:00] perfection, took her 24 minutes.

Dr. Sharp: To copy?

Dr. Donna: To copy, a lot too high.

Dr. Sharp: Oh goodness.

Dr. Donna: Yeah. I did, after the first 10 minutes, started to tell her, it’s okay. It doesn’t have to be that perfect but that’s… Her TOVA was terrible. Her academic testing was fine as long as I didn’t time her, once I timed her, her scores got slower, but otherwise, it was fine. There were no learning disabilities.

So at this point, I had ruled out a language disorder. There was no evidence of OCD. There was no evidence of trauma. So I’m left with two theories. It’s either anxiety, depression, ADHD with the stress of the pandemic or it’s that she’s autistic and she’s trying to cope in a non-autistic, which is driving anxiety and depression.

So what I do for every client when I’m considering a possible diagnosis of autism is what I call my worksheet, which is, [01:22:00] I’m happy to send you a copy but it is embarrassingly simple. I’m not a complex person. So it is simply one piece of paper where I now go through everything I know about the client from every source. I just categorize things under reciprocity, relationships, nonverbals, repetitive, flexibility, interests and sensory, and see what I’ve got in each category, regardless of where it came from.

I make myself go through that exercise for everybody where autism is a possibility because I really want to check myself either way whether I do or don’t diagnose. And with Annie, I can think about sending you a copy if people want to see what it looks like. I’m not going to go through it now but there were a ton under everything but interests. Every [01:23:00] category had so much.

So then what I do is just take a step back and think about the big picture and wonder, okay, are there any other explanations for what I’m seeing that I haven’t yet thought about? Does autism make sense? Do the prior diagnoses fully explain everything in a meaningful way or not completely?

For me, at this point, it’s less about the details and more about the big picture, because sometimes we can explain each symptom away, like, well, that could be due to ADHD and that could be due to anxiety, but once you integrate it, it’s more meaningful. And at this point, sometimes I’ll do CARS2 if I’m not 100% sure, but in this case, it wasn’t necessary. Not surprisingly, I decided that autism made sense for Annie.

Do you want to hear about that feedback session?

Dr. Sharp: Yeah. Let’s hear about that. [01:24:00] You mentioned that there’s some aftermath as well.

Dr. Donna: Oh yeah. Okay. I listened to your interview with Karen Postal about feedback sessions. I had read her book at one point too, which is wonderful. It was a wonderful interview and it was so validating, the whole time I was listening, I’m like, yes. It’s wonderful. And definitely, the more the merrier as Karen says.

So with Annie, she and both of her parents were there. Mr. Jones tried to get out of me in there as happened sometimes, he said that his work schedule didn’t allow it and I said, okay, I’ll meet with you on the weekends. I’ll meet with you on weeknights. I just feel like it’s so uber-important for both parents to be there.

I took his excuse away and he came. I never name tests at all. I almost never talk about scores. [01:25:00] If I talk about a score, it’s to make a point like I did with you with her vocabulary at the 99.6 percentile and yet she couldn’t explain emotions.

It’s my belief that people are generally pretty darn anxious when they come to the feedback session, they might be worried about what I will diagnose. They might be worried about what I won’t diagnose. I try to make it more predictable by giving them a quick overview. Like here’s what we’re going to do. First, we’re going to talk about the problems, the things that brought you in to see me, then we’re going to talk about all the strengths and then we’ll get the recommendations.

I also try to manage their anxiety by giving them some control and making it clear, this is collaborative. This is a conversation, not a lecture. I really want your input on all of this. If you disagree with me or if you’re not sure, put it out there, let’s talk about it. I’m okay with that.

I don’t want them to feel like I have all the power because I don’t see it that way. [01:26:00] But the biggest idea I have at the forefront of my mind in a feedback session like this is to have a neurodiversity mindset because we’re the ones who set the tone and are role models for how they are going to ultimately understand autism.

And so if you’re doing a feedback session and you’re going to diagnose autism and you find yourself thinking, oh no, I’m giving them bad news and you’re anxious about doing that, then I would encourage you to hit that pause button and rethink it, and maybe seek consultation from someone who has neurodiversity, affirmative approach. Do whatever you have to do to process your own feelings about autism because it shouldn’t feel like you’re giving bad news. It’s big news, it’s emotional, it’s serious, but it is not bad. It should feel like you’re giving clarity and hope.

And as part of this, I don’t ever refer to autism as a disorder. [01:27:00] I use identity-first language, not person-first language. If people ask me what autism is, my best definition is that being autistic is having a different brain than most people have, which makes you experience, understand, and interact with the world in a different way but it also means having to live in a world that is dominated by non-autistic people and having to cope with all the misunderstanding and bias and blame that just comes from being different. That’s my understanding of autism.

The other piece I would say about that is just be careful about the particular language you use, because if you say something like, your eye contact is poor versus eye contact is uncomfortable for you and you’ve had to work hard to meet other people’s need for eye contact and you get blamed when [01:28:00] you don’t meet their need for eye contact, do you hear the difference?

Dr. Sharp: Oh sure. Small but important. You’re saying the same thing; you’re describing the same behavior but a different lens makes a little difference.

Dr. Donna: A huge difference I think or your child is rigid versus your child’s brain does best with predictability in team because he finds them to be soothing and safe. You’ve get the idea.

Dr. Sharp: It’s great examples.

Dr. Donna: So as far as the format of Annie’s feedback session, as Karen Postal does, I raised the possibility of autism, right at the start, I dive right in there. I don’t build up to it. And then we take a lot of time to walk through the diagnostic criteria. I explain each criterion and what it means, and then how I think that individual meets that criteria and we talk about it. This helps them understand [01:29:00] what I even mean when I say autism, but it also helps them see that this is a data-based decision. It is not Donna’s gut feeling.

And that’s important because it convinces the doubters like parents who are starting out with you’re crazy, my kid’s not autistic. It walks them through it. It also can help with what I call autistic imposter syndrome that I think some really bright autistic people get, they have moments of, maybe they were all wrong. Maybe I’m not really autistic. I fake it so well. In a bad way, this is a bad experience I’ve heard from a number of autistic adults. So I want them to know, no, this was not a mistake. I would not diagnose this if I was not 100% sure and this was based on data.

So we go through the diagnostic criteria and then we get to the parts that are not part of the criteria but are related to [01:30:00] autism or frequently co-exist with this. So that’s when we would talk about context blindness, ADHD, which is not at all uncommon as a first diagnosis for autistics, so many of them get that first.

We talk about the sleep issues and the GI issues. I’m trying to pull all the pieces together for them. And this is not like some new diagnosis on top of everything else you’ve been through. This is the underlying common denominator that pulls the pieces together.

Dr. Sharp: I want to rule them all.

Dr. Donna: And then we finally get back to what really brought them in the first place was this persistent anxiety and depression. Finally, we’re able to understand all the pieces that are contributing to that but the stress of camouflaging, which is tremendous, the sensitive fight or flight response that so many autistic people have and the [01:31:00] connection to constipation that we talked about earlier, or at least Donna’s theory

Dr. Sharp: Donna’s ideas of the connection.

Dr. Donna: Donna’s creative working. We talk about black-and-white thinking and how that makes you vulnerable to depression. Let’s say I yell at one of my own children, which has never ever happened, Jeremy.

Dr. Sharp: Of course, not, me neither

Dr. Donna: Of course, I assume you’re a perfect parent. Yes. So let’s say I yell at one of my kids and afterward I’m going to feel crappy about it. I will acknowledge it. That was a bad mommy moment. I’m not happy with myself but at the same time, I feel that I’m a good parent and most of the time, I don’t yell at them and I do my best. So that’s great thinking. But if I was a black-and-white thinker and I yelled at my kids and then felt badly, I would be vulnerable to I’m the worst mom ever. I yell at my kids all the time. I’m going to screw [01:32:00] them up forever and that kind of thinking is obviously going to lead to depression.

We talk about alexithymia and interoceptive awareness and how that contributes to anxiety and depression and the difficulty making gains in therapy and why she couldn’t benefit from CBT so far. We talk about autistic burnout, which I think happened a lot to her, and it’s not just from all the camouflaging, it’s the exhaustion from the context blindness and the sensory overload all the time.

So then Annie is feeling so validated and understood at this point. And then we talk about her strengths. I like to end on a positive note and I won’t go through all of her strengths now in the interest of time, but it’s not just strengths from the battery, like your vocabulary and your reading and your writing and all that, I highlight things like her work ethic, her [01:33:00] motivation, her desire to be helpful to others. I highlight the fact that it is a complete myth that autistic individuals have no empathy. I talk about her openness, her patience, her insight, her resilience. I highlight the character strengths more than the strengths I found in the battery.

I was feeling good about this feedback session and then the next day I got an email from Mr. Jones and I saw it in my inbox and my heart started pounding because I have a lot of interoceptive awareness. I got a little anxious, I thought, he doesn’t agree with me. It’s going to be a thing, but okay, let me read it.

He wrote to me, and I should say he had been very quiet throughout the feedback session. I checked in with him a few times but he was hard to read and pretty quiet. So he wrote to me that that night he got online and he took the [01:34:00] AQ and got a very high score. And that as we talked about everything, it resonated with him and that he suspected he was on the spectrum but that it hadn’t cost him any problems. He was happily married. He had a great career. He didn’t see himself as anxious and we had a great conversation about the difference between being autistic and having autism spectrum disorder because I think there are people who have an autistic brain and they’ve built a life that works for them, whatever that looks like and they’re fine.

Dr. Sharp: Yeah. This is such an important distinction. I’m glad that you are touching on that. That’s such a hot topic these days. There is a lot of questions and discussions around that thing but the way you frame it makes sense, we can somehow separate an autistic brain as an adjective versus the noun of the [01:35:00] disorder, right?

Dr. Donna: Yeah, there’s some way to look at it.

Dr. Sharp: It makes sense because I think we all have seen those folks over the years. Not those autistic folks, but maybe other diagnoses as well, where they have the brain but it’s not causing significant impairment and that’s okay.

Dr. Donna: Absolutely.

Dr. Sharp: That’s an important distinction.

Dr. Donna: Yeah. To finish up, I can talk a little bit about recommendations if you want. I also feel like maybe we’ve gone on too long, but I want to end by telling you that I checked in with Annie and her parents two days ago, just in thinking about this podcast, I thought, oh, I wonder what they think now that it’s 6-12 months since the diagnosis. [01:36:00] So I’ll check in with you about time. I don’t know if you want me to just jump right to that so we can wrap up.

Dr. Sharp: Yeah. I would love to hear, say your top two recommendations, the things that you felt were most important, and yeah, we’d love to hear a little ending here, wrap up with Annie.

Dr. Donna: I would say, as a general rule, my recommendations are not geared toward making the autistic person look less autistic. So it is not automatic to me like go to a social skills group. I don’t make that recommendation all the time or even most of the time, it’s really trying to help this person be their authentic autistic self in a way that’s more functional for them, less stressful for them.

Some specifics for Annie was doing therapy with a therapist who actually gets autism so she can [01:37:00] reframe her internal narrative about everything. And then working on her interoceptive awareness either with that therapist or with an OT or Kelly Mahler has some great books that people can go through for interoceptive awareness and then making some changes in her life to allow for protecting her social energy, allowing for recovery times. It’s hard for me not to be like, and this and that but those are some of the top ones.

And then I had recommendations for Annie’s parents. A lot of which really revolved around teaching them new communication patterns and the unbelievable importance of validation because individuals who are autistic get inadvertently invalidated over and over again. And so really just starting with a solid base of validation is [01:38:00] huge and there’s a great book I often recommend to parents called The Power of Validation. It’s a small book and really helps. I think it’s been a long time since I read it, but I think it helps them understand the difference of validation versus encouragement versus problem-solving and just easy ways to do it.

Just to finish up, two days ago, I reached out on email to Mr. and Mrs. Jones and to Annie and said, as part of my research, they know I do these extracurricular activities like podcasts, was it helpful? And if so, how? Mr. Mrs. Jones wrote; it was hugely helpful. It allowed Annie to feel better about herself almost instantly. It’s like a burden had been lifted. It allowed them to find the right therapist for Annie and they stopped trying to fix her, is what they said.

They now can anticipate areas of difficulty and discuss them as [01:39:00] a family. They have more of a sense of ethicacy as parents and a lower level of stress in the home. I was thrilled to read that but even better, it was what Annie wrote and I’ve read it like eight times. I’m going to try to read you a few quotes without crying.

Dr. Sharp: Hey, crying is okay.

Dr. Donna: Oh my God. I don’t want to be the first one to cry out in your show. I think I was the first one to curse on your show.

Dr. Sharp: Those are two pretty solid titles.

Dr. Donna: Okay. I’m going to give you a few quotes from Annie and I’m going to do it without crying. Annie wrote to me, I’m a lot more aware of my own needs and how to address them now that I know that I’m autistic. I’m much more forgiving of myself now that I know that the things I had always blamed myself for and felt shame over not being able to control are not flaws but are a result of my neurodivergence, which is not [01:40:00] something that I should be ashamed of.

Before my diagnosis, I never ever allowed myself to unmask even when I was alone. Now I’m allowing myself to act on a lot more of my impulses, to do things like steam, talk to myself, turn off lights, adjust to my environment to fit my sensory needs, respond to what my body wants, read social situations to reset, not force myself to talk if I don’t want to.

She wrote a lot more detail here that I’m not going to read but she ended by saying, overall, my symptoms have gotten much more pronounced now that I’m allowing them to manifest externally but I am much more comfortable with the person that I am and the things that I do, I am much happier, much more aware of myself, my brain, my emotions, and my body, much more capable of taking care of myself and my needs and I like myself much more.

Dr. Sharp: How powerful. That’s amazing.

Dr. Donna: It’s amazing, right?

Dr. Sharp: When we think about the ideal outcome for our evaluations, I guess there are many ideal outcomes, but this is pretty hard to beat; self-acceptance, self-love, family support.

Dr. Donna: Sometimes people are wondering whether or not they should proceed with autism evaluation or a neuropsychology evaluation, and they say, how does it help to get an autism diagnosis and yeah, accommodations and all that but the real issue is, it changes the internal narrative of the person and everyone who loves them and is in their life. That’s the real benefit to me.

Dr. Sharp: It’s cases like this, the perfect example of [01:42:00] that. Oh my gosh.

Dr. Donna: Yeah. So I want to thank the real Annie for allowing me to share that.

Dr. Sharp: Of course. That’s so special. I think that’s probably a nice note to end on, right?

Dr. Donna: I think so.

Dr. Sharp: Sometimes happy endings are okay. We can go with that. It doesn’t always have to be hard.

Dr. Donna: Yes, absolutely. Thank you for making this easy, Jeremy. I felt a little vulnerable talking through how I do my job. It’s just a different kind of interview. You made it easy and it was fun and I really appreciate it.

I wanted to say also, thank you for creating such a community. I don’t get on Facebook very regularly, but when I do, I’m always amazed at how active that community is. I think if you created something really special there.

Dr. Sharp: well, I appreciate that. At this point, [01:43:00] it’s really self-sustaining and it’s the members. Everybody is pretty incredible for the most part. Likewise, I just feel so fortunate that you were willing to take the time and come back and be vulnerable in different ways. I think this is pretty wonderful and I think that people are going to take a lot away from this. So thank you so much.

Dr. Donna: My absolute pleasure, anytime.

Dr. Sharp: Okay, everyone. Thank you for tuning in to this masterclass episode. I really appreciate it. I hope that you found it helpful. Again, just to reiterate as we ended there on the feedback session, both Donna and I want to be clear that getting a diagnosis is not the solution to all of someone’s problems by any means. We did not mean to present it that way. It is just a hopefully helpful step along the way for this girl and her family.

And like I said at the beginning, if you’re [01:44:00] interested in hearing more about Donna’s book release or reaching out for case consultation, you can do that at her website, drdonnahenderson.com, lots of resources in the show notes as usual.

If you need support in your practice, there is a mastermind for that. The Testing Psychologist Mastermind groups are geared toward practitioners at all levels of practice for group coaching, accountability, support, and guidance as you build your practice. You can get more information at thetestingpsychologist.com/consulting, and reach out for pre-group calls. We’ll check it out and see if it’s a good fit, and if not, we’ll figure out something else that will help you.

Okay. Thanks for listening as always and I will catch you next time.

[01:45:00] The information contained in this podcast and on The Testing Psychologist 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. Please note that no doctor-patient relationship is formed here, and similarly, no supervisory or consultative relationship is formed between the host or guests of this podcast and listeners of this podcast. If you need the qualified advice of any mental health practitioner or medical provider, please seek one in your area. Similarly, if you need supervision on clinical matters, please find a supervisor with expertise that fits your needs.

Click here to listen instead!

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.