Is This Autism? Understanding Neurodiversity, Navigating Social Cues, & How to Support Loved Ones with Neuropsychologist Dr. Donna Henderson
Episode Notes
Have you ever wondered if someone you know might be on the autism spectrum—or even questioned it about yourself?
Autism Spectrum Disorder (ASD) is often misunderstood, misdiagnosed, or even missed entirely, especially in those who don’t fit common stereotypes. In this episode, neuropsychologist Dr. Donna Henderson joins us to unpack the complexities of autism, neurodiversity, and how we can better understand and support those around us.
What You’ll Learn:
* The 7 key criteria for identifying autism
* When to pursue a neuropsychological evaluation
* Why talk therapy often falls short for neurodivergent individuals
* How someone can exhibit an "autistic nervous system" without having ASD
* Practical ways to support loved ones
This conversation will deepen your understanding of neurodiversity and help you see the world—and those you love—in a new light.
Resources:
- The Best of You Podcast question form
- Episode 129: Understanding Anxiety—A Step-by-Step Guide to Finding Calm, Advocating For Yourself, and Cultivating Inner Resilience
- psychologytoday.com
- Episode 71: All About Therapy—Do I Need a Therapist, How Do I Find One, and What Type of Therapy Works Best?
- Is This Autism? A Guide for Clinicians and Everyone Else by Dr. Donna Henderson and Sarah Wayland
- isthisautism.com
If you liked this, you’ll love:
- Episode 85: The Goal of a Healthy Family & 6 Roles We Take On In Dysfunction
Thanks to our sponsors:
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- This episode is sponsored by BetterHelp. Give online therapy a try at betterhelp.com/BESTOFYOU and get on your way to being your best self.
- Go to thrivemarket.com/bestofyou for 30% off your first order, plus a FREE $60 gift!
- Fatty15 is on a mission to replenish your C15 levels and restore your long-term health. You can get an additional 15% off their 90-day subscription Starter Kit by going to fatty15.com/BESTOFYOU and using code BESTOFYOU at checkout.
- Whether you're exploring distant lands or enjoying a staycation at home, Cozy Earth has your back. Visit cozyearth.com and unlock an exclusive 35% off with code BESTOFYOU.
Music by Andy Luiten/Sound editing by Kelly Kramarik
© 2024 Alison Cook. ALL RIGHTS RESERVED. Please do not copy or share the contents of this webpage without permission from the author. While Dr. Cook is a counselor, the content of this podcast and any of the products provided by Dr. Cook are not specific counseling advice nor are they a substitute for individual counseling. The content and products provided on this podcast are for informational purposes only.
Transcript:
Alison Cook: Hey everyone, and welcome back to this week's episode of The Best of You Podcast. I am so glad you're here with me this week and every week, but especially this week, as we are diving into a topic that I know so many of you are eager to learn about, and that's neurodiversity, especially focusing on the autism spectrum.
I recently ran a poll. I have a doc. It's called The Best of You Podcast question form doc. It's not fancy at all. It's a Google doc. We'll link to it in the show notes. But in that doc, I asked you what specific diagnostic categories you wanted to learn about.
This was a couple of months ago, and neurodiversity was your top choice by far for a specific diagnostic category that you wanted me to cover. I am thrilled to bring this conversation to you, especially with today's guest neuropsychologist, Dr. Donna Henderson, who brings an incredible wealth of knowledge and expertise in this area.
What I love about Donna is she is clear. I learned so much through this conversation. She breaks things down so simply and so clearly. I'm so excited for you to hear from her today. If you listened to last week's episode, Episode 129, we talked all about anxiety and the different things that drive anxiety and how to better understand it and manage it.
One of the things I mentioned is that sometimes a root cause of anxiety comes from another condition, meaning that anxiety isn't the primary condition that we need to treat. It's actually secondary. There's something else going on underneath the anxiety. Neurodivergent individuals, especially those on the autism spectrum, tend to experience anxiety more frequently.
I am thrilled again, to take this deeper dive into that specific area with Donna today. I want to start briefly to touch on some of the key terms in case they're not familiar to you. Neuropsychological testing is Donna's area of expertise. This is a comprehensive evaluation that helps uncover the strengths and challenges specifically in your brain function.
It's often used to identify conditions like autism spectrum disorder, ADHD, and other neurodevelopmental disorders. And this type of testing really plays a crucial role in understanding how your brain functions and its unique ways of processing information and engaging with the world.
So it can be so helpful in getting to the root of some of the problems or the challenges that we're facing. If you are listening to today's episode and you're interested in finding a professional who does neuropsychological testing, there's a filter for these specialists on the website, psychologytoday.com.
You can go back to Episode 71, where I walk you through step by step how to locate specific types of therapists in your zip code, in your region. And one of the things I walk you through is how to use psychologytoday.com in the first place. There are filters on it to find these types of specialists, and one of those filters is testing and evaluation.
So you can go filter for people who specialize in testing and evaluation, like our guest Donna does, if you're interested in learning more about neuropsychological testing. Feel free to go back to Episode 71 to learn more about how to find a specialist like this in your area.
Without further ado, I want to introduce you to today's guest, Dr. Donna Henderson. Donna is a licensed clinical neuropsychologist who has dedicated her career to understanding and supporting neurodivergent individuals, particularly those on the autism spectrum.
She's been working with clients for over 30 years, and she is the author of the book, Is This Autism? A Guide for Clinicians and Everyone Else. This is an incredible resource for everyone. As the title would indicate, it's not just for clinicians, it's for anyone who identifies as autistic or who loves someone who is autistic. I am so excited to share with you today's conversation with Dr. Donna Henderson.
***
Donna, I am so thrilled that you agreed to join me today and join the podcast to share with us your expertise. I have a million questions to ask you. But the first thing I want to touch on here on the front end is this work that you do in neuropsychological evaluations.
From my own experience as a clinician, one of the things I've noticed is the more precise we can get diagnostically, the better we can help people. Often, people get categorized or pigeonholed with a diagnostic label that doesn't fit well. I talk about well-fitting names. If we name something and it's not the right name, it really has big implications and repercussions, whether we're working with children or loved ones or spouses or family members or ourselves.
I would love to hear a little bit about your perspective on what is a neuropsychological evaluation? What does it mean? What are you looking for when people come to you for an evaluation?
Donna: Sure. First of all, thank you for having me. I am really excited to be here and talk about this. The way I often explain a neuropsych eval is that I describe myself as a detective and the mystery is that some person, whether it's a child, an adolescent or an adult, is struggling with some aspect of their life.
Maybe they have anxiety or depression or big emotions, or they're struggling in school, or they're not able to meet their social needs, whatever arena they're struggling in. And I have to figure out what's going on there and how can I help them? I look for clues by interacting with people mostly.
Interviewing the parents, interviewing the individual, having them do different tasks with me so I can see what makes them tick. A neuropsych eval includes interviews, it usually includes rating scales where people answer questions, pen and paper sort of thing. And it usually includes some testing, which may be IQ testing, memory, language, executive functioning, attention, different aspects of functioning and social cognition as well.
To me, the idea is not to get a diagnosis, although it often does end in a diagnosis or maybe even more than one diagnosis. To me, the real idea is to figure out, what the heck is going on here? What makes this person tick? How do they move through the world? What works for them? What doesn't work for them? What are their strengths?
And when it comes to all of that and the diagnoses, I think it should resonate with the child or the individual, with the parents. We should all be on the same page. To me, it feels like it should be a very collaborative process where it makes sense at the end of the day, where we all feel like we solve the mystery and we have a roadmap to move forward.
Alison Cook: I love that once we get a healthier understanding of what's happening, we can find a better path toward helping the individual thrive. What are some of the primary things you're looking for, especially when we're thinking about things that get missed. I think about kids that either that I've worked with or long ago, when I was brand new, and a parent would be exasperated by a child's behavior.
“They can't pay attention in school. They're acting out”. They're getting labeled as a problem child. And this was decades before it was more common to think about the brain, to think about functioning, to think about neurodiversity. To use your detective metaphor, I would think to myself, there's something else going on here.
This is a good kid. This kid isn't trying to cause trouble. What's going on there? I remember one time, I had a young teenage client, and a family member ended up giving her an IQ test and her IQ was off the charts. There was some explanation there for some of her boredom in class, for some of her anxiety.
It does require that detective mindset. What are some of the things you're looking for? And what are some of the primary diagnostic categories that you see getting missed or falling through the cracks with individuals?
Donna: So when you were asking that question, one thing that ran through my mind, and I wish I could remember who said this, but it might have even been my co-author and friend, Sarah Wayland. Kids aren't giving you a hard time. They're having a hard time. Often, when parents bring kids in, it's because there may be behavioral problems or the kids aren't meeting expectations or aren't being compliant in different ways.
The parents have this experience of God, he or she is giving me a hard time. But really, the child is having a hard time. And when I think about it, I do think about it mostly from a brain point of view. Back in the day, we didn't think about that as much. We used to think more about was there trauma in the child?
I actually worked with a family this morning with a six year old who is flipping over desks in school and eloping from school. He has very supportive schools, super supportive parents, no trauma history. And everyone keeps saying he's anxious. He's anxious. He's anxious.
Sure. But to me, the real question is why is he anxious? There is no good reason that we can see for him to be anxious. He hasn't experienced trauma or a negative household situation or anything like that. There's something in his nervous system that is driving that anxiety. So I'm trying to get underneath to see what's going on.
A lot of the time that means understanding their sensory functioning. What's going on with their sensory needs or their sensory overwhelm? What's going on with their social functioning? Are they misperceiving cues? Are they confused by basic interactions? I'm looking at some of that stuff.
Alison Cook: That's so interesting. That's helpful because we're trying to be trauma-informed. We're always trying to look to the past. We're always trying to look at the system. And you said something really powerful there. When we've turned over all the rocks and there's nothing really there, and this child is still really having a hard time, you're coming in and really looking at those internal mechanisms, the nervous system, the brain to try to figure out some of these patterns.
I'm assuming you're looking a lot for patterns. Is that part of it?
Donna: Yeah, absolutely. Patterns. I'm looking at the big picture. When I train other clinicians, I always say, when you're gathering information, it's all about the details. So ask for another story, ask for another example, really get down into the nitty gritty of it all. But once you've collected all your information, then it's not about the details.
Then it's about the big picture, stepping back and looking at this child as a whole. This relates to the other question you asked about what diagnoses tend to get missed, and autism is a big one. The reason is that so often, no clinician is looking at the big picture of that child.
You might have an occupational therapist diagnosing the sensory processing disorder. And then maybe a year or two later, you'll have a speech therapist diagnosing social pragmatic communication disorder. And then at some point you might get a psychologist or psychiatrist saying, oh, there's some ADHD here.
And then a few years later, you might have another therapist saying, oh, you have anxiety. Everybody's seeing one little part and these all may or may not be accurate. Quite often they are, but nobody's stepping back and putting all those pieces together and looking at the individual as a whole. And that's what a neuropsych does.
Alison Cook: That's a really helpful way to put it because any one of those little pieces could have truth in it, but we're trying to get to the root. What is actually, for the most part, as best we can tell, driving all of these different things? Because if we're treating the anxiety and there's actually an autism spectrum diagnosis up here, we're going to be missing a part of that path toward health.
Donna: 100%.
Alison Cook: As far as getting a neuropsych eval, when would you encourage somebody to take that route? At what point in the journey would you encourage someone?
Donna: Oooh, I don't know if I could give you a good answer for that because it's so individualized. It really depends so much on what the problems are and what they've already tried to do, what is working, what isn't working, how much distress there is for the child and for the parents, how available a neuropsych is for them.
I will say, I think in most areas of the country, you have to get on a waiting list to get a good neuropsych eval. If you're thinking about it, it's probably worth making some calls before you think you're fully ready, because you may have to wait anywhere from three months to well over a year in some places.
So people should be aware of that, because very frequently at my practice, for instance, I get phone calls where people are at a breaking point, at a crisis point, or feeling really ready now. And then they're very disappointed when they find out they have to wait. That's a common experience.
Alison Cook: Yeah, that's a really great tip. I guess from my vantage point, when I see people who are struggling with something complicated, the downside is the cost and the wait time if it's not covered by insurance. But other than that, it's hard for me to find a downside because you're getting into the details and that whole holistic approach, which can save you time and money in the long run, from going down rabbit trails that don't get you to where you want to go. So I've found it to be incredibly helpful to see those results.
Donna: It's my experience as well. And I will say, I think most of the people we work with at the end of the evaluation say, we wish we had done this sooner. I hear that very frequently.
Alison Cook: Let's dive into the autism spectrum. Tell me a little bit about how you speak about autism spectrum diagnoses.
Donna: There are probably 140 million autistic people on this planet, if I look at the population of the world at the current prevalence rate of 2.77%, That's a really huge number of people. And that's a really wide spectrum of people from, people who require 24 hour, seven day a week, very close support for every little thing and very close supervision, all the way to people who are fully happy and functional in their lives and are getting their social needs met and are contributing to the world in a million different ways and have interesting careers and whatever their life goals are.
It's really hard to talk about 140 million people in one way. And that's where I think we're having a lot of difficulty now, finding wording that makes everybody feel comfortable. I would say a few things. In the DSM, the technical diagnosis is autism spectrum disorder. When we're talking about medical documentation, applying for disability, those sorts of official things, that's the language that we use.
A lot of the people I work with tend to be autistic people with average to above average intelligence, many of them having later diagnoses in adolescence or well into adulthood. Many of them prefer autistic person over person with autism, because person with autism is a medical model. It's putting the person ahead of the problem.
So you might say it's a person with diabetes, not a diabetic person. But for this group of people particularly, they feel like this is not a medical problem. This is part of my identity. It's part of who I am. So I prefer autistic person. And so that's the language that I tend to use–autistic person.
It's also true that somebody can be autistic, meaning having this kind of nervous system, but not have autism spectrum disorder, if they are living their life and they're fine, they're meeting their own social needs, they're doing, meeting their goals, doing whatever it is they need and want to do in this world. There's tons of people out there like that. They happen to be autistic, but they don't have autism spectrum disorder.
Alison Cook: Okay. So let's dive in there a little bit, because there's so much to what you said. You said, having the features of an autistic nervous system without necessarily having what would meet the criteria for a quote unquote disorder. Tell me a little bit about what you mean by that.
Donna: So there are seven core criteria for being diagnosed with autism, plus one. When I say someone's autistic, but doesn't have autism spectrum disorder, they meet enough of the seven. You don't have to meet all of them, but they meet enough of those core seven so I know that, okay, you have that kind of brain, you have that kind of nervous system. But the plus one is, there's some kind of functional impairment related to it.
Alison Cook: Okay.
Donna: The people I'm saying are autistic, but don't need a diagnosis are the ones who move through the world this way. They have this type of nervous system, but they don't have any functional impairment. They're not super anxious or having trouble meeting their social needs or whatever it is. So that's the difference, that functional impairment
Alison Cook: That makes a lot of sense. Can you give us a sort of bird's eye view of those seven characteristics?
Donna: The first category are differences in someone's social or communication skills. There are three criteria in this category, and somebody has to meet all three. At any point in their life, it could be current, it could be by history. It doesn't have to be both.
The first of the three is all about the back and forth flow of interactions. Intuitively knowing how to greet people, how to share personal information, showing interpersonal curiosity, being reciprocal in conversation. Meaning, if you say, oh, something weird happened to me this weekend. I say something related to that.
There's not one right answer. I could say, what happened? Or I could say, my God, something weird is always happening to you. Or I could say, oh, I had a weird weekend too, but it has to be related. And as part of this first criterion, there's also the ability to take somebody else's perspective to intuitively understand somebody else's intentions, for example, what's going through somebody else's mind to some extent.
So it's not whether or not somebody has these skills, but how effortful it is. So some of these people with less obvious autism can pull off socially typical looking interactions, but they are unbelievably exhausted by them. They can do it for a short period of time. These are kids who may camouflage at school, come home completely melted down or go to sleep for many hours. That's the first criterion.
The second one in this category of social and communication differences is nonverbal communication. That's everything about communicating except for the words. So facial expressions, tone of voice, gesturing, body language, personal space, volume, all of that stuff, paying attention to and understanding other people's. So if a teacher speaks in a stern tone of voice, knowing the teacher is not yelling, that's a stern tone of voice.
Being able to discern all these little differences and also giving off your own non-verbals that are typical and easy for most people to read. Eye contact is in this one too. Much of this is about understanding the subjective experience of the individual, because a lot of these kids learn at a pretty early age how to make typical eye contact, but if you ask them their experience of it, they may tell you, oh, I hate it.
I hate looking at eyes. They creep me out or I can't concentrate, but I forced myself to do it because I know everybody expects me to. It's not intuitive or comfortable for them as much, a lot of autistic people will tell you that.
Alison Cook: And this is where in these two, and maybe in the next one, I thought it was interesting what you said, even when the person has figured out how to do it, they're exhausted by it. We're not talking about introversion, but exhaustion. We're not talking about, I'm peopled out.
It's a level of sensory overload. And I think you even use the word meltdown where there's something pretty significant. It's not a typical response to a day with other people or to a social event.
Donna: It is absolute exhaustion. I had one college autistic college professor once say to me, Hey, I can go to the department party and be there for 45 minutes and look perfectly typical and completely blend in. And what people don't know is then I'm in bed for a day and a half recovering from that 45 minutes a day.
We all can get a little tired after socializing, especially post COVID. We all got out of the habit for a while, but this is next level. There's also often a confusion or effort piece to it. They're not intuitively moving through social interactions, but they're thinking, oh, I should smile now. I should put on a smile.
Oh, I haven't spoken in 60 seconds. It might be my turn to speak. Is it my turn to speak? I probably should speak now. There's a very conscious thought process, which is probably in part why they're so exhausted.
Alison Cook: I want to finish getting through the list, but I want to ask you later about specifically therapy for individuals who are autistic, because there is that component of putting on a mask. We talk a lot in traditional therapy about being authentic, figuring out how to show up authentically.
There's a way in which that could create some dissonance for someone who is autistic–for me to function in a social setting in order to fit in or in order not to be negatively perceived as anything from socially shy to rude especially in an extroverted world, I have to go through these motions. I have to learn these skills.
It makes a therapeutic intervention a little bit different. And I've learned that a little bit as well. So I want to come back to that, but I want to bookmark that.
Donna: Yes. It's really hard for me not to jump into that right now, but I agree. We should get through the criteria. Okay, so we're doing the first of the two categories, social and communication differences. There are three. The first one, interactions. The second one, non verbals. The third one is relationship management.
Making friends, deepening friendships, keeping friendships, maintaining them over time, understanding relationships. If a kindergartner tells you everyone in their class is their friend, that's socially typical, but if a 5th grader thinks everyone in their class is their friend, that shows they're not having a typical understanding of social relationships.
Or if they think teachers are their friends, that sort of thing. Conflict management comes into this category of social motivation. People can be autistic and very socially motivated, really want friends, romantic relationships, all that. Or people can be autistic and have very low social motivation. And I've had more than one autistic kid say, no, seriously, I would like to live in a cabin in the woods in Alaska and not see anyone, but my parents can come visit for one day a year kind of thing. And they mean it.
So if somebody is very socially motivated, that does not preclude autism. That's the first category of interactions, relationships, and nonverbals, and you have to meet all three currently or by history. For example, if you have a 15 year old who makes typical eye contact, but they didn't make typical eye contact until they figured it out, say in fourth or fifth grade, then that still counts towards diagnosis.
Alison Cook: Which is probably also how it can get missed because, yeah, they figured it out.
Donna: Exactly. And the other main way it gets missed is the timeline is different from what a lot of people think. Many people have this wrong idea that it has to be fully evident by age three. And that's not true. For a lot of really smart autistic people, particularly girls, it becomes evident around fifth grade.
That's when we really start to see it. And if you look back, you can see the signs, but it wasn't ever big enough for people to take note until somewhere between fourth and sixth grade typically.
So that's the first category. The second category of the criteria are repetitive and restricted behaviors, RRBs. There are four in this category. You only have to meet two of the four. So that confuses people. They think if they don't meet one of them, they're not autistic, but nope, two out of four. The first one is what we informally call stimming. So that is behavior that is repetitive or atypical. It can be any kind of movement.
So in the more stereotypical presentation of autism, you might have kids flapping their arms or flicking their hands. A lot of these kids, repetitive picking, repetitive hair pulling or twirling, pacing back and forth repeatedly, countless different kinds of movements. It can be repetitive speech or unusual speech, like formal language.
My own daughter with whom I have a very warm relationship calls me mother, that formal language. It can be repetitive use of objects. Watching the same TV show over and over and over again, not two or three times. I've had kids who say, yeah, I watched Despicable Me 84 times so far in a row or reading the same book over and over again, drawing the same thing over and over again.
So that's number one, repetitive behavior. Number two is inflexibility. And it doesn't necessarily mean that they're being behaviorally difficult all day, every day. There's pockets of inflexibility. They might have difficulty with change or transitions. They might get stuck in their thinking, stuck in loops or stuck in their perceptions.
They might have very rigid black and white thinking. If they don't like someone, that person's evil. Black and white thinking about other people. They might be perfectionistic. A lot of these girls are highly perfectionistic. So that's the second one, flexibility challenges.
The third one is interests. In the stereotypical presentation of autism, they tend to have atypical interests. Airport codes or orange traffic cones, that sort of thing. But in this less obvious presentation of autism, you tend to have typical interests that get really intense. So it can be animals, either animals in general, or a particular animal.
It can be reading, a K-pop band, any pop star, makeup, typical stuff, but they do a much deeper dive than most kids do. And then the last of the four is sensory differences, not the sensitivities that everyone is aware of or the sensory seeking, but less known sensory differences, and a big one is called interoception, which is knowing what your body is telling you, knowing if you have to use the bathroom, knowing if you're hungry, knowing if you're anxious, knowing if you're cold or hot, being able to read those signals from your body as one of the sensory differences.
So the second category has four. Number one, repetitive behavior. Number two, inflexibility or need for sameness. Number three, interests that are intense or atypical. Number four, sensory differences.
Alison Cook: And those are all of the categories. In that second one, you need to have two of the four.
Donna: Correct.
Alison Cook: Okay. So you might have someone listening and they're going, oh my goodness, I see this in myself. I see this in my spouse. I see this in my child. That would indicate an autistic pattern of thinking, an autistic brain for lack of a better way to put it.
Donna: Maybe so. When I do live trainings, people always come up to me afterwards to chat and ask questions. And inevitably there are one or two people that say, I think I might be autistic, or I think my child might be. They have that instant whoa, a lot of what you said resonated with me.
I can divide those people into two categories. For some of them, it's a passing thought, because one or two things I said resonated with them. So I'll put myself in that category–once or twice a year. I have a moment of, wait, maybe I'm autistic and I've never identified as autistic. And I'm not autistic.
But once or twice a year it crosses my mind because I have some sensory sensitivities and my husband tells me I can be rigid at times. Little things, nothing major. It passes very quickly. The more I think about it, the more I realize, nope, I have one or two things in common with autistic people.
But for that other group, the more they read about it, the more they learn, the more they think about it, the more deeply it resonates either for themselves or their child or both. These things are genetically driven. And for that group, then I think they should take it seriously.
Alison Cook: Yeah. I love how you're saying that again, back to this big picture piece. Because me too. I heard a couple of things in what you said, and I was like, oh, the interoception, I have a really hard time with that. But we have to put that against the larger picture of the whole constellation, the overall pattern.
We're going to have some things in common, but that doesn't mean we actually have this whole style going into the world. And then you add that seventh criteria, there's impaired functioning in some domain of my life.
Donna: If anyone comes into my office for a neuropsych eval or a consultation, by definition, there's some functional impairment. Something made them call me and make an appointment. And that's true for you, for any mental health clinician. People don't come in for the heck of it.
They come in because they're anxious or they're depressed or they're lonely or they're not doing well in school or at work or whatever it is. So that part is automatic to me, pretty more or less once they're in my office for the most part. And to be clear, that's number eight.
We have seven. So there's the three social criteria and the four repetitive restrictive criteria. So there's seven core ones. This would be number eight, not number seven. Yeah.
Alison Cook: Okay. This is so helpful, to get the lay of the land where there's a large pattern and it's more than one thing. There's a spectrum. If I had a dime for every time somebody who either themselves or a loved one has been diagnosed with autism said to me, I thought it looked like Dustin Hoffman in Rain Man. And it doesn't.
Donna: A white male who is overtly odd and has massive difficulty managing day to day life. There are college professors who are autistic people. There are comedians. There are professional athletes, happily married people, certainly activists out in the community. There are pastors and ministers and rabbis and teachers and there is an entire lost generation of autistic adults who don't know they're autistic.
Alison Cook: I love that you're naming that and this is where I want to move as we wind down. I want to honor your time. How do we approach therapy, and in addition to that, how do we approach it when we know somebody has this? I heard a comedian, to your point about comedians, Hannah Gadsby, talk, and it was so stunning.
I thought this was a great metaphor. She said, it's like if someone is colorblind, she said, that's how it feels for me going into a social setting. And she said, you don't tell somebody who's colorblind, see color. Here's all you need to do. They can't go in and see the social nuances.
We live, especially in American culture, in such a socially oriented world. There is such a high premium on that kind of traditional interpersonal skill. I have a real soft spot in my heart for folks who are feeling sidelined and marginalized because to use her metaphor, they feel colorblind and they're being told there's something wrong with you or figure it out.
With that backdrop, what would you say? What kind of therapy might be most helpful if you're someone who you or your loved one is in this category and how can we come alongside those who have this style, this way of being in the world and to help be a kinder, gentler, more community oriented world?
Donna: Yeah, I love that. Historically, once somebody was identified as autistic, the goal of all the adults around them was, let's help make them look less autistic. Let's teach them how to make “better” eye contact. There's no such thing as better or worse eye contact or good or bad eye contact.
There's typical and less typical. And all that was doing, and I'm not saying there isn't a place for something like that–we all have to learn how to be somewhat functional in the world. But the core of therapy should absolutely not be about that. To me, it's about helping, especially if we're talking about children here and adolescents, helping them understand who they are through the lens of neurodiversity.
Not, you have a disorder called autism spectrum disorder, but you have a different kind of brain than most people have. You're in a minority group. And anytime you're in a minority group, that makes life a little bit more challenging. That's not a problem within you, but it is a problem for you. And we're going to work together to help you understand this, to help me understand your experience, to help them understand it.
Ideally, they also will have a group experience with other bright autistic kids their age too. We all want to connect with other people who understand our experience. Truly. I think that can be really helpful as well. These kids are so misunderstood for so much of their lives and there often is a trauma piece.
I don't necessarily mean trauma with a capital T, although autistic kids are more likely to have trauma with a capital T, negative life experiences, parents getting divorced, that sort of thing. But they're also more likely to experience typical life events as traumatic. Walking into the school building can be traumatic for them. Having that trauma lens, that autism trauma lens in therapy can be very helpful as well.
Alison Cook: That's interesting. Even when you said how it can be hard to detect the nuances of tone for a child or even an adult, I think about a work setting where someone maybe is having a bad day and has a stern tone of voice, they experience that as being yelled at, and they might go to that black and white thinking.
That would weigh more heavily on that person than someone who understands, oh, they had a bad day. They used a sarcastic tone of voice with me. It makes it a little bit harder to move through the day and move through the world.
Donna: A lot harder. We could sit here and talk for many hours about the many different ways that it is harder to move through the world as an autistic person. I'll give you one super quick example. It's such a minor one, but it's one of a thousand. Around my dinner table, on my side of the table, is me–I'm a non autistic ADHD person–and my youngest daughter who has the same neurotype.
And then across the dinner table are my two older kids who are both autistic. They live off at college and my husband sits at the head of the table. One day, my youngest was telling a story and my older two weren't making any eye contact. As a non autistic person, I experienced that as rude and it bothered me.
At one point I said, hey, you guys, how about some eye contact over here for the non-autistic people? Because that's how we talked to each other in my family and they laughed and then they put me in my place, rightfully, and said, why should we have to make eye contact because it feels more natural to you?
We know we have to do it out there in the world. We get that and we accept it, but we shouldn't have to come home and do it here in our own home when it's uncomfortable to us. And that doesn't mean it was wrong for me to want eye contact either. Nobody's right. Nobody's wrong. It's a matter of talking openly and leading with curiosity about our differences and having communication about it.
And I think that is probably the most helpful thing of all.
Alison Cook: I love that. You said right before we started recording something about a family of different neurotypes. Every family is a family of different neurotypes. And in your family, you each know your type, and there's a way in which then you're negotiating. One of you is saying, I'm done with eye contact for the day. Another is saying I need some eye contact.
This is a family. And I love that because this whole podcast is all about how we come together for the good of the whole. We bring our individual selves, we bring our individual neurotypes, whether we're neurotypical or atypical, whatever the diagnosis, whatever the framework is, but we're coming together, trying to create harmony, which doesn't mean normalizing one over the other. It means each person learning how to honor the other.
That's true in relationships. That's true in a family. I love that. The knowledge really helps. You can each name it, and that really helps with the understanding and with the communication.
Donna: Oh, it makes all the difference in the world. I'm actually working on a training right now with a brilliant autistic psychologist named Megan Anna Neff and she's autistic, I'm not, and we're working on a training that is all about cross-neurotype communication. Because once you understand everybody's neurotypes and how they communicate differently, verbally and non verbally, because both are super important, then so much of conflict and hurt feelings and anger falls away when you understand.
Alison Cook: It's so good. We make so many assumptions about people based on the subtext, the cues, the eye contact, the questions that someone asks or doesn't ask, instead of really seeking that deep understanding and that deep knowledge that we have the power to gain now through people like you who are doing this work.
I could keep diving into this but I want to honor your time. Tell everyone where they can find you. You've got some amazing resources to really help people with this. Where can people find you, Donna, and the work that you're doing?
Donna: Sure. I've co-authored two books and the first one is called, Is This Autism? A Guide for Clinicians and Everyone Else. We realized that a lot of clinicians didn't understand the less obvious presentation of autism and decided to write a book about it. And I gradually realized, oh, nobody understands this. It's not just for clinicians. That's why it's called a guide for clinicians and everyone else.
That's with my co-authors Sarah Wayland and Jamell White. And then there's a companion guide for clinicians that I do recommend for clinicians, but for parents or people who are wondering if they or their child is autistic, it's the first book. It's the guide for clinicians and everyone else.
Our website is isthisautism.com and we also do have some videos there, so if people are more into listening than reading, they can access the same information more or less that's in the book in those videos,
Alison Cook: I highly recommend it if you've been listening and some things have stood out to you. If you're aware of man, we've tried everything but nothing's working, and some of the things you listed really rang true about your loved one or about yourself, or trying to understand some behaviors that don't make sense to you, start getting curious. Is it possible there's something in the brain going on here?
Or the clinicians listening, is there possibly something here that might fall in this category of neurodiversity or autism? Because it can be so helpful to understanding, to clarity, and to finding, as you said, that path through, so thank you so much for what you're doing and really appreciate your time today.
Donna: Thank you so much for having me.