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Podcast Episode Transcript

Episode 26

Interview between Speaker 1 (Meg) and Speaker 2 (Rachel Dorsey)

[Introductory note]
Hey, it's Meg! If you're an OT or a speech therapist who loves this podcast, you'll enjoy my free training, Four Essential Strengths-Based Strategies for Autism. In this training, I dive deep into the places where many therapists are getting autism wrong, talk about why it matters way more than we realize, and teach four concrete strategies that you can start using right away. We even talk in-depth about what we know now about autism learning styles, because when we can shift our perspective and truly consider how autistic kids think and learn, we can start generating more meaningful and effective interventions to help our clients find more joy, independence, connection, and acceptance in their lives. Visit learnplaythrive.com/masterclass to start learning right away.

[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.

Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.

Welcome to Episode 26 with Rachel Dorsey. Rachel is autistic, and she is a speech therapist. She's also a consultant for Learn Play Thrive, and a guest speaker in my online course, The Learn Play Thrive Approach to Autism. Basically, what happened is I asked Rachel to explain some things to me about autistic people and social skills because I was getting it sort of wrong in the way I was teaching it. She explained it and then I said, can you just teach this yourself, because there's no way that I could capture the depth of your insight in my paraphrasing; that I would just butcher it and not do service to it, and she did, and it was great. I'm really excited to have her here on the podcast today to talk about the social experiences of autistic people.


She's going to talk about the ways that a lot of us really misunderstand the social experiences of autistic people, but also the ways in which our interventions have these rippling effects throughout the lives of our autistic clients that we never could have imagined in a negative way, because inadvertently we're teaching our clients to mask, or to hide their autism to present as non-autistic, or to even hide their emotions and their feelings. I feel like I am working really hard as an OT to learn about the ways that my neurotypical perspective is wrong, the ways that I really get my autistic clients wrong, and still when I listened to Rachel, when I read her blog posts, I learn new ways in which I am probably really missing the mark with my interventions. And so, this is really an important conversation for all of us to listen to you. Here's the interview.

Hey, Rachel! Welcome to the podcast.

Rachel: Hi Meg, thank you for having me.

Meg: Yes, it is always so wonderful to talk to you. I want to start by talking a little bit about your own experience. So, you're autistic, and you're a speech language pathologist, and before we talk about all of your insight into autistic kids and their social experiences more broadly, tell us a little bit about your own experience.

Rachel: So, my own experience as an autistic person and an autistic speech pathologist is quite tricky actually. I find that I promote not masking. I hope for future generations of autistic children and people who don't mask. That being said, I need to mask sometimes when working, when being a autistic speech therapist. And before, prior to my diagnosis, masking was the mode that I was in all the time because I didn't know that it was masking. I thought it was just something that people have to do for work, and social engagements, and everything. And then, when hearing more about experiences of autistic people, I realized, "Oh, no, this is not — this is not what everyone does. This is what seems like autistic people do," so, I wondered if I'm autistic.

So, then came realizing I'm autistic and getting diagnosed; realizing I'm autistic, and then the process of unmasking. For some people, it's painfully difficult. For me, it has been a relatively smooth process in my day-to-day life, but in my speech pathology life, it's been difficult. And there are some parents and professionals that I can unmask with. And there are some colleagues, and professionals, and parents that I still feel that if I don't mask, I'll get in trouble with my boss, or the parents will drop me, or this, or that, or a whole range of things. Yeah, I think that the intersection of being employed in a clinical career while being autistic is really challenging, especially while I'm trying to promote not masking because I want kids to have a better life than the one I had and have.

Meg: Yeah, that's really interesting the way you describe your personal experience. We've heard that a few times on the podcast for people who got diagnosed as adolescents or adults, or for people, I should say, who found out they were autistic as adolescents or adults, that they could start that process of self-acceptance. And for you, of unmasking and of not working so hard against yourself and being able to be yourself. But then you have this barrier, this almost ironic barrier in your professional life, that you are navigating. Do you disclose that you're autistic in those situations?

Rachel: Again, that is something that I'm still navigating. I'm disclosing more that I'm autistic. So, I'm employed right now, and more people are finding out about me through my consultancy, and if they live in Massachusetts, can seek me out as the therapist. So, they know I'm autistic. There are people who — I have my website as my signature in my email. So, they're free to click on it, and so sometimes I don't even know if they know that I'm autistic, but it's come out. Some parents are like, "Your website is so cool," and that's been really nice actually, because it opens up this sort of elephant in the room; this possible elephant in the room. Certain parents, I feel more comfortable disclosing, and certain parents, I don't feel comfortable disclosing. And same goes for professionals, except sometimes I disclose to a professional that I share a case with, not necessarily because I have this huge trust in them, but because I need them to know that I'm autistic. So, hopefully, any sort of awful thing you're going to say about autism — just don't. That doesn't necessarily always work, but that's been something I've just started to do, let other professionals who probably don't know, know.

Meg: Yeah, that's really complex. And you mentioned your website, dorseyslp.com, and it says Rachel Dorsey with a little call-out that says 'Autistic SLP', and you're really saying, "I am an autistic SLP. Turn to me because I have some insight that is useful and that will help me connect with and understand your child, and help you connect with and understand your child." And I love that there's parents who know to seek that out. On your website you have this wonderful blog with really, really rich, detailed blog posts. One of them is a two-part series, 'The dilemma of social skills', and I will definitely link directly to that blog post in the show notes.

Rachel: Thank you.

Meg: Yeah. We've talked about social skills a couple times on the podcast. So, we started talking about this in Episode Two with autistic researcher Dr. Damian Milton, and then in Episode Three with Dr. Kristie Patten, who both said stop it with teaching social skills, right. We're explicitly teaching autistic kids to mask their autism, which we know has all of these negative health outcomes, instead of plugging them into leisure and play opportunities that they enjoy, and that are meaningful for them, and that are actually fulfilling in their lives. So, that seed has been planted a few times on the podcast, but we can't say it enough, and we get to go way deeper into it with you today. So, lay the groundwork again for me, what is the problem with teaching autistic kids to interact socially in a way that is expected by neurotypicals?

Rachel: So, there's many, many problems. I would say, it all comes down to that it'll never be natural. It'll always be exhausting, even when it's subconscious, even when it's involuntary. That is still exhausting. That is still all these cognitive resources spent trying to figure out the intentions of others and then how to respond in a way that pleases them without — with really disregarding your own needs. You probably don't even know what your own needs are at that point. The social needs, the regulatory needs, the sensory needs of the autistic child are deemed secondary to the comfort of everyone around them. And so, what you're left with is an exhausted autistic person. Often an anxious, depressed autistic person who doesn't really know themself in this desire to please everyone around them.

Meg: Yeah, a lot of us have seen by now, I hope, this sort of big picture research of masking and PTSD, depression, suicidality, but I really appreciate the close-up image that you're painting here of what it looks like at the individual level, and how, as a non-autistic person, I might look at someone who has had social skills training and is masking and say, "Wow, they're doing great," when really what I'm saying is, "Wow, the way they're acting makes me feel comfortable." Putting my needs, like you said, as primary, it's putting their authenticity, their ability to know themselves, and if they know themselves, the ability to act on who they are and act as who they are as secondary. And what's at stake is their life. What's at stake is their well-being and their life, and that is an invisible process to most neurotypicals. We say, "We're helping them fit in so they can have friends and be happy," and we couldn't be more wrong.

Rachel: Right. I mean, I mostly work with younger, like 10 and under autistic children, but I've had some autistic teenagers. So, I've never seen it, but people have talked about all the social skills therapy successes of, "Well, now they have all these friends and they're so happy," and now the child is totally — you just can't tell them apart from the non-autistic children. And I think to myself, because since I haven't had many clients this age or like older teenagers or young adults, I think to myself, I think to my friends — in fact, my best friend since the age of 11, she also got a diagnosis of autism as an adult, but she's not a speech therapist. I feel like all of my autistic friends are also speech therapists, but not all of them. And I think, to everything we've talked about together, of, "Well, yeah, we had friends, but that didn't last." These were inauthentic friendships. These are friendships where we were constantly studying the next right thing to do, and trying to map out all the possible ways that the other person could react, and then how I react, and then how the other person reacts, and ruminating over, "Oh, how did I react when they said so and so," and then replaying that moment over and over and over in bed thinking, "Okay, well, next time I'm going to do it another way," and so, like this is inauthentic. It's all these planned out inauthentic interactions with people that at the end of the day, consistently, there is a very painful loss of the friendship.

Meg: How is that different from your friendship with your best friend who is autistic?

Rachel: I mean, it's completely, it's completely different. So, my best friend who's autistic — I don't want to go into like too much detail but she is out on being autistic. She's, like, she lets people know. But we bond, and still bond over — looking back, it's like we bonded over being just autistic. We bonded over studying back when, like CosmoGirl magazine was like still out, and like the teen fashion magazine, Seventeen magazine. Studying those, and circling, and bookmarking pages, and bonded over calculating every like outfit that we'd wear every day, and every look we do, and we bonded over a lot of that. So, like, fashion, and trying to fit in and look neurotypical. But it wasn't just that, it was also like we bonded over Neopets, which is, you know, you can say, well, it's teenagers, it's not an age-appropriate interest, but we were both super into Neopets, and we bonded over — still bond over — Sailor Moon. A lot of interests.

And I think what's really interesting about our friendship is that even though we're both autistic, we are very different in a lot of ways; yet because we're autistic, we process things pretty similarly and that really helps with the bond. She was more the — this sounds weird, but like the bad girl, kinda, and I was really into just staying like the good girl, following all the rules and everything, and she wasn't. But like despite us being so different and also having completely separate friend groups that we're no longer friends with, we still were best friends, and had and still have a really close bond.

Meg: I want to talk more about the social experiences of autistic kids, something really similar to what you just described with your friendships with non-autistic girls versus with your autistic best friend. You played out a scenario like that for me in a case study that I give in my online course. So, we recently spent a lot of time together going through it and changing the content to better reflect what I'm learning from you and from other autistic adults, and it was the social differences piece that you were like, "Oh, you got a lot of this really wrong." And one of the case studies was from my own work of a little girl who wanted to have better experiences playing with her friends. She was really, really social but she always wanted to play with dolls, and we taught her like how to ask her friends what they wanted to do, and make a little Venn diagram, what do your friends want to do, what do you want to do, where's the overlap, and that worked great. And I checked it off of the list and it was like, "We did it! Now she's doing this thing," and you sort of played that out into the future for me about all of the ways that that is going to stop working, and all the ways that that sends the wrong message, and all the things that were so much more important that I could have been doing with this child instead. And we overhauled that together. I want you to walk us through that process here on the podcast.

I'm going to start with the DSM. So, bear with me while I read some intensely deficits-based stuff. The DSM-5 says that autistic people have persistent deficits in social communication and social interaction, deficits in social-emotional reciprocity, deficits in non-verbal communicative behaviors used for social interaction, poor verbal and non-verbal communication, difficulty developing and maintaining relationships. I will tell you, Rachel. I'm not still friends with any of my high school friends, and your best friend friendship has persisted. So, take that, DSM, for your 'difficulty maintaining relationships', but amongst everything else, just unpack this for me. How would you describe the social skills and social experiences of autistic people?

Rachel: I would say that autistic people, it's a neurologically based difference that results in a different culture of communication. So, autistic people bond a lot over shared interests, that's something that people commonly know. And you can say, "Well, doesn't everyone bond over shared interests?" Yes, but our interests are so — they hold so much emotional space, and sharing that with someone who gets it, who, even if they don't have that exact same interest, they can appreciate the joy that this interest brings me or other autistic people, as opposed to a like, "Okay, will you stop talking about it already, like let's just move on." And so, that's a really big piece. That's especially great when the interest is shared, and you can just talk about it for extremely long periods of time.

I would say that because autistic people — this is very contrary to the DSM criteria for autism — but autistic people, I would say, frequently really, really want a deep, deep social connection. Which is why going right from the start of talking to someone that they might not really know, they don't really know very well, going right to the start of just talking about their favorite thing, or something that's deemed inappropriate. So, you can have someone going in talking to someone they don't really know, going about that difficulty with their romantic life or trying to find a partner, or going in talking about just topics that are deemed to be like, you know, private, more personal. The thing that all these things have in common is it holds a lot of emotional space. And then we know that that's what deep social bonds consist of. You are able to talk about those things with people that are very close to you. So, we go right to that.

Meg: I kind of love that. I wish it was chit-chat that was pathologized and surface level interactions.

Rachel: Right. I — yeah. I mean, I can think of so many times of chit-chat and me just being really confused at, um... Like, what I did wrong before I kind of learned. I was explained the purpose of chit-chat. So, I think, explaining some neurotypical social norms has a lot of value, but pressure to do it doesn't have a lot of value, unless it's times of safety. And then, of course, that safety is very context dependent. That's more of a gray area in my opinion, as far as masking goes.

Meg: Yeah, those are great examples. I had another podcast guest; I think it was Sarah from The Autistic Empire in Episode 17 who said we should lay out neurotypical expectations and our autistic clients can take them or leave them. We should say, "Just so you know, here is what neurotypicals do, and here's what they expect. It's up to you if you care about that or not, if that's important to you, if you want to try that or not," rather than teaching that, and incentivizing that, and insisting on that. But, you know, we've said over and over how the work needs to go both ways, that we can also say to our non-autistic people in the group, "Hey, here's what the autistic person might expect or feel comfortable with here."

Rachel: Right. I, in general, agree with those sentiments. I have some caution against — I mean, so certainly, we need to be talking about different communication styles beyond just autistic and non-autistic. I think we need to be talking about ADHD, and dyslexia, and learning disabilities, and kind of go beyond just autism as a neuro type to reduce stigma on disabilities in general. And the intersection of having a disability impacts communication within the context of therapy. I have some reservations with having explaining to a 12-year-old girl who really is super eager for friends, like, "Okay, here's what neurotypical people expect, and here's kind of the autistic method of communication," and then just like letting the child pick, because the child is going to pick the neurotypical expectation. The child is so desperate for, like I said, that social bond that the means to get there might not really matter, and the long-term effects might not really matter.

So, I think that we — some explaining of different communication styles within the context of disabilities in general and different neuro types, and possibly talking about how masking makes us feel like inside, helping the child realize, "Okay, well, yes, I do get invited to the movies with this group of friends. Also, how did it feel in that moment?" which is tricky, because the child might not be that in tune in the moment with their emotions, but yeah. It's really hard to navigate exactly. I think that we need to be really, really creative in how we approach these types of situations, because all teenagers are so desperate for belonging, and they might decide to just mask even given the option.

Meg: Yeah, I really like that you're including this. That you're saying, yes, your internal experience, your thoughts, your feelings, they do matter. And this is the message all of us, speech therapists, OT's, other professionals, parents, that we really want to be sending; that we hope that we're sending, even when we really aren't. Even when we don't realize the ways in which our interventions are actually teaching masking. And you describe this so well in your blog post. You say that these types of interventions create "a foundation for a lifetime of inauthenticity and shame around ourselves". That's not what any of us came to teach, but even therapists who are not teaching social skills intentionally, we might say, "Oh, I'm teaching social-emotional regulation so the child can participate more easily and more effortlessly in their life," there's still so many insidious ways that we are actually and accidentally sending the message to a child that they need to disregard, or to hide their internal experience, their thoughts, their feelings. Can you give me some examples of the more hidden and subtle ways, or the ways that we might miss, that this plays out with OT's and speech therapists with our autistic clients?

Rachel: Yeah, so, this is even something that, because — I mean, because in graduate school and in continuing education, and just in life, these things are really drilled into us. This is something that even I am having to unlearn. But things like telling children telling other people how they feel is something I used to do a lot, because — I mean, I stopped doing like the, you know, the emotion cards, like labeling emotions, pretty quickly. I went like, "Oh, this is pointless." But then I went a lot into seeing an autistic child act a certain way, or seem to have a particular reaction, and then I would label it for them, so they could then learn, "Okay, this is what I'm feeling." But I've learned that if you're — well, first of all, it's difficult for even me sometimes as an autistic person, I can only imagine how difficult it is if you're a neurotypical clinician to read the emotional state of autistic people, because often the facial expression and body language doesn't match the internal feeling.

So, going ahead and labeling it for them, it might be wrong. And when you label something, an emotion, incorrectly and the child learns, "Okay, that's what this is," and then continues using it, it creates so many opportunities for emotional and regulatory needs to not be met because they're just continuously saying the wrong thing. I have a personal example that I can share.

Meg: Yeah. Yes, please.

Rachel: So, this was like, this is personal, like, this was me. I grew up for a lot of my life thinking like, "Okay, I'm anxious," and then I start counseling. And, you know, I mean my parents would say, "I'm anxious," and then the counselor would say, "I'm anxious," and, I mean, I probably thought — I mean, I was anxious, okay. But then I went to a psychologist, and I said, "Okay, I'm anxious," and it's like, "Okay, well, here's a diagnosis of generalized anxiety disorder." So, then, I get older, I see a psychiatrist, and I have a diagnosis of generalized anxiety disorder, here's the medication for generalized anxiety disorder. And I'm not against medication at all; believe me, I'm on plenty. But you can just kind of see like what happened here.

So, then, just about a year ago, I was talking to a counselor that I had, and I was talking to this counselor about how when I — after a really good speech therapy session where I'm like really bonding with a child, and I just feel so right, or if a parent gives me like really great feedback, I feel anxious. And the counselor wasn't really — we were trying to kind of problem solve this, like what's going on here, what is this. And she asked me like, "Okay, what does my body feel like?" and I'm like, "Well, my stomach hurts when I'm anxious, and my heart's beating really fast, and my head can feel kinda brain foggy." And we kind of left it that.

And so, then the next week I came back into counseling, and I'm like, wait. No, no. The feeling that I have when, you know, I have a really great therapy session, or I get really great feedback or something, that's not anxiety. And the reason I know that isn't anxiety is because my stomach doesn't hurt, and my stomach always hurts when I have anxiety, but my brain still feels brain foggy, and my heart is racing. And we figured out that it wasn't anxiety I was feeling. It was actually, like, euphoria, like being ecstatic. And so, I think back to all the times in my life where I was ecstatic, or I was feeling euphoric. And I'm like, "This feels very uncomfortable to my body. I'm getting anxious, so I'm going to take a Xanax right now." So, I'm now currently working through all the different emotions that I can have, starting with how my body feels. But I don't label children's emotions. Instead, I point out what their body is showing me it's doing, and then I can provide a variety of emotional states. But I don't want to just assign an emotion because I know personally how constantly just having that one emotion we kind of fall back on, and not even knowing what other emotion words really mean. Like, I pull out our emotion wheel, and I'm like, this whole category, this whole half the board, it's just the same. Yeah, I know what that is like, and so, I don't want that for the kids that I see.

Meg: That's so interesting, especially to be able to hear you play that out to all the different places that took you the wrong paths that led you down personally as an adult. I think about my own four-year-old who is very expressive and is not autistic, and I do this. I say, "You're feeling angry." He says, "No, I'm not angry. I'm really sad," or, "I'm really frustrated," or, "I'm actually hungry." He corrects me all the time and I still come in authoritatively describing his feelings to him. And it's very interesting, I think a lot of us are probably playing back in our minds all the times we've described an autistic child's emotion, and all the ways that we certainly could be getting that wrong.

On your blog post, when you go through all of the typical kinds of interventions when we see a kid who's becoming distressed, you know, we might say, "You're in the red zone, you need to get back into the green zone. This is not a big problem, this is a small problem. You're being inflexible, don't want that inflexible brain," when you go down the list of things that I think most of us who read it are nodding our heads saying, "Yeah, that's what we say, that's what we do," but then you flip these examples on their heads, and I think one example from your blog posts that really landed with me was a child to drew pictures during Art class. And the teacher would show some of the pictures and not others, and he became really upset when his wasn't shown, and his therapist taught him how to not show that he was upset. That's what that therapist thought she was doing right, she thought she was teaching him how to not be upset. And you demonstrate how what she showed him was to stuff, swallow, suppress his feelings and act in a way that makes everybody else feel more comfortable. And it was like, oh, the bombs splashed into the water on that one, and I personally had to go through all of the times and ways, is that what we're doing? And what can we do instead?

Rachel: So, I mean, I still believe from a young age, discussing neurodiversity and autism and that children should be aware that they're autistic, but you're not able to talk about it with the level of sophistication as you would with an older student, and certainly wouldn't be able to work on, or work through, perspective taking like you would with a neurotypical client with autistic clients, and autistic clients with a neurotypical client. So, I think with younger autistic children — I mean, like seven and under — it requires a lot of creativity. Thinking outside the box, and a big emphasis on — I mean, this really is every age — but a big emphasis on self-advocacy skills from that young age as well as classroom education about — I mean, in an ideal world, it would be classroom education about autism and all the different neuro types.

But to go back to like your example of — or my example of the child who wanted his picture to be shown around art circle time, I think that being really creative and perhaps having that — because that child, what they really want is the social closeness that others looking at their art brings. So, something like having designating that student to be the, I mean, they're always doing like weather. I feel like weather in pre-K is how we get into small talk about weather, from a really young age. But I mean maybe that student could be the designated class like weather drawer and draw whatever the weather is that day; maybe that student could — oh, I have to think — it would take me a while to think of different ways to be creative with this. I think the most important thing to keep in mind is what the student is looking for, which is that social closeness of others appreciating this thing that they did, and to try to get at that in a way that everyone kind of benefits from.

Meg: That's such a nice shift, and I think we don't have to know in this, you know, made up example what the right next step is. It's important for us to at least start by saying, "Are we teaching kids that their thoughts and feelings and experiences don't matter, and how can we do something different?" Rachel, I always end with this question — if there's just one thing that we've talked about today that you would like to see SLP's and OT's start doing or do differently, one takeaway, what would that be?

Rachel: I would love to see clinicians think about the long-term implications of the social skill therapy that they're doing, because they're not the ones who are experiencing working so, so hard for it, maybe a month, maybe six months, maybe a year later, all come crashing down. They're not the ones experiencing gaining a set of skills that is pretty superficial, but not knowing how to navigate the intricacies of what happens, and relationships get more intricate. So, the first step is considering that, what is going on in the therapy room, or even what mom reports at home, or even what is reported a few months later, might not be the emotional reality.

Meg: Thank you, Rachel. That's really a big shift, I think, for most of us and something that we are overlooking to the detriment of our clients. So, guys, Rachel's website, dorseyslp.com, she does consultancy work. She is consulting for Learn Play Thrive on my content, and I can just vouch for her as such an insightful and transformative consultant. So, you can find her there and we're really excited that Rachel's course, Goal Writing for Autistic Students: A Neurodiversity Aligned Approach is going to be available as a Learn Play Thrive course later this summer once we can get it registered for CEU's, and everybody is going to want to jump right into this, I know. Give us the quick pitch for your course, Rachel, what's your elevator speech about Goal Writing for Autistic Students?

Rachel: Oh gosh, I'm autistic, I don't have an elevator pitch. It is a pretty comprehensive course that walks you through eight case studies based on de-identified real clients I've had, other connections I've had, as well as fictional clients. And you just really go through how to see the autistic client as a whole person. And then, from all the information in front of you, to writing goals that actually will set you as a clinician on the right path for the autistic students’ success, because it has to start with the right goals.

Meg: Awesome. It really does. And I am taking Rachel's course, it is so good. I'm taking Version 1 of her course, we're going to have Version 2 ready later this summer, and I'll announce it on the podcast, email list, and everywhere so that people can hop into that course and keep learning from you. Thank you so much, Rachel.

Rachel: Thank you, Meg.

[Ending note]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.