Interview between Speaker 1 (Meg) and Speaker 2 (Emily)
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 11 of the podcast. Today, you'll hear my interview with Emily Lees. Emily is an autistic speech and language therapist working in the UK. She works in a specialist setting supporting autistic children and teenagers. Emily is committed to adopting pro-neurodiversity approaches and wants to be an advocate and role model for her students. Emily is a new speech therapist with incredible insights and a huge goal to transform the way we understand autism. You can find Emily's visuals and resources about autism on her Twitter account, which I'll link to in the show notes.
Emily: Hello, thanks for letting me be here.
Meg: I'm so glad to have you here. So, I want to jump in and get personal with your story to start off. You were recently diagnosed as autistic — tell me a little bit about what that process was like for you.
Emily: Okay, so I should probably preface by saying I'm currently self-diagnosed. I am on the autism pathway in the UK on the NHS. However, the pathway is very, very lengthy, and particularly now with the COVID pandemic, it can take anywhere from 12 to 18 months to even get an official diagnosis. So, where I am right now is, I actually started to wonder if I was autistic about a year ago because somebody very close to me in my life kind of suggested that I could be autistic. This person is autistic herself, she has three autistic children. And it was ever since she suggested it to me that I just kind of went on a fact-finding mission, learn everything there is to know about it as autistic people do, and it became somewhat of a special interest of mine. And I just spent that time reflecting on my life. It just made sense.
I was like, "Oh, God, like, of course." And because I've not been officially diagnosed, I do have some kind of anxiety around telling people that because you don't want people to doubt you. There is a lot of this sort of, "Oh, well, everyone's a bit autistic." And the thing is, it's not just something that I decided to name myself. It was a long process and lots of speaking to other autistic people. I also got a sensory profile done, and the OT who did it said, "Look, you have the sensory profile of an autistic woman."
That's kind of my recent coming to terms with my recent diagnosis, but in terms of how I got there, I should probably explain that I was given a mental health diagnosis of borderline personality disorder (BPD). And what we know now is there's lots of research now that says autistic women have been misdiagnosed with BPD — which I'll sort of comment on a little bit later — but I was placed in the mental health system when I was a teenager. And over the last 15 years, I've essentially been misdiagnosed, and I've not had the support that — I think if I would have received that support much younger, then things might be a bit different now.
Meg: For people who aren't familiar, can you just briefly explain what borderline personality disorder is, and what it means?
Emily: Yeah, so, BPD. It's definitely one of the most stigmatized mental health diagnoses. It's in the DSM, it's the symptoms as in the DSM. It's essentially trauma-based, so attachment trauma. Part of the checklist for BPD is unstable mood and very emotionally labile, whereas bipolar moods can last sort of days or weeks. With BPD, it's very much fluctuation in mood throughout the day. BPD is a scale. You can have episodes of being really unwell where you might have to be hospitalized. So, self-harm, suicidal behavior, huge relational difficulties, interpersonal difficulties. The core of BPD is fear of abandonment, rejection, high anxiety, depression, disassociation, substance abuse, anorexia. It's pretty much like the catch-all of mental health symptoms.
Meg: So at this vulnerable time when you were really starting to establish your identity, you got this diagnosis instead of what could have been your diagnosis as autistic. And I imagine that's really shaped your journey and your relationship to yourself. Can you talk a little bit about what this journey is like for many girls and women on the spectrum in moving towards getting their own diagnoses?
Emily: Yeah, so it's happening more and more now, the young women — and women of any age — are being misdiagnosed with BPD because essentially, there is a huge overlap of traits. For example, in BPD with the interpersonal difficulties and relational difficulties, that's also a huge feature in autism, particularly in autistic girls and women. So you can take the list of BPD traits in the DSM, and you can kind of like put them alongside some of the autism traits.
So, relational, kind of social communication difficulties in autism — they present very, very similar with BPD. Unstable sense of self. With autistic girls and women, there's all the — as I said, the social difficulties, the putting on different personas, the masking. And then the impulsivity in BPD. So, yeah, maybe binge eating, spending, substance misuse. In autism, that's all around sensory difficulties, and the emotional dysregulation, self-injurious behaviors, dissociation, numbing. They're just very, very similar in how they present. And it is difficult to differentiate between the two, I think, as mental health practitioners.
Meg: I imagine that, given that the root causes of these symptoms are so different in autism, compared with borderline personality disorder, that if you’re misdiagnosed you’re probably not getting the right treatment and the right intervention. Is that your experience?
Emily: Yeah. I mean, things are different in the UK compared to the US. So, for example, for BPD, you can be waiting two years, up to three years for the treatment for that. For example, dialectical behavior therapy (DBT) — I know from personal experience just how long you can be even waiting for that. And what tends to happen is once women are put on that waiting list, the psychiatrist will say, “Okay, now your job is to stay alive until you can receive the therapy.” And the problem with that is, after two years go by, often these women won’t meet the criteria for the treatment because they’ve managed to get through and somehow get to a place where they can function. And it’s scary.
You know, growing up as a child and as a teenager, kind of the settings that you’re both in, a lot of the support that I would have benefited from would have been in school, in college. Because, unfortunately — so I was actually late diagnosed with BPD. So I spent all of my adolescence and young adulthood just struggling. I didn’t really have a diagnosis. I look back and I just think, if only I had received some support. Because I’ll tell you now, I left high school with barely any qualifications. And I remember I would always be really, really good at the things I really, really liked.
So, when you’re 16 in the UK, you sit these exams and there’s so much pressure that’s put on them. And then that determines what college you go to next, and all that sort of thing. So, I left high school getting maybe D’s, E’s, in a lot of my subjects. The ones that I did really well in were English and drama. And I ended up really struggling through school because I always felt like I was either in the top classes for English, but then I was in the bottom classes for everything else, you know, and that spiky profile is quite common for autistic girls.
I remember when I went to college, trying to get on to a course in college, and the person in admissions, he said, “I don’t really understand how you can have A’s and B’s, and then like D’s and E’s.” So, I just wasn’t in the right place. The place that I work right now is a speech and language therapist. I kind of wish I was in a place like that.
Meg: Yeah, so you’re a pretty recent graduate of your speech and language program. Can you talk a little bit about your experience with the interview process, and looking for a job? What was hard and what was helpful for you?
Emily: The interview process, for me, was soul destroying. I have to be honest, I am not good in interviews. Like even this podcast interview, I’m anxious; my thinking is really fast. I really struggled in interviews, and it actually took me, I think, maybe six or seven interviews to actually get the position that I have now, which ironically is in an autism setting. But the interview process for me was so, so difficult because interviews for people like myself — don’t like auditions, they are these horrible situations. You don’t get the best out of the person. The multiple interviewers adhering to all the social conventions, and multi-part questions. So, as soon as somebody asked me the first part of the question, and then they started on the second, I’d already forgotten what the first bit was; I just found them so, so difficult.
And each interview rejection, my anxiety will go up, and my confidence in myself would go down. And just the shame, and the, “Well, maybe I shouldn’t be a speech and language therapist because nobody wants to employ me.” The worst one for me was I went for a position that they interviewed six people, and they were hiring five people. So they’re interviewing six people, hiring five, and I was the only one who didn’t get a position, and it was just really hard. It’s really hard. I can’t say 100%, but I’m pretty sure you know the other five candidates weren’t autistic or neurodivergent.
Meg: What are some of the things that you found that helped you be more successful in the interview process?
Emily: Well, unfortunately, I didn’t know about all the accommodations that people can get until the last few interviews. So, once I knew that you could take notes in, and you could have bullet points in front of you... I didn’t even know you could do that. And also, the accommodations that I did learn about from a local Job Center, I was too embarrassed, you know. And this is so common! This is such an important issue in discrimination and ableism. It’s that thing of, ‘I can’t ask for this because people won’t think I’m competent’. Even now I struggle to ask for my own needs, and it’s that internalized ableism that I have. For example, some of the things that helped me, and that would help me in the future, would be asking for the questions in advance, so I can plan. It would be having less interviewers in the room, and having more task-based interviews where they can see my skills.
And I think the job that I currently do now in the autism setting, they did something that no other interview did, which was they allowed me to meet some of the students as part of my interview, and they just, you know, put me in a room for 10 minutes. It was just the best thing that they could have done, and I loved it. I think without that, without being able to meet the patient or the client, you never really know what that person is going to be like. So, it was, yeah, that was a really, really good opportunity for me to just interact with people, where it’s not forced.
Meg: I think employers could really benefit from listening to that insight, because the ability to do well in a job interview is really just a performance and a social convention, and doesn’t reflect your clinical skills. I’ve had to do that once where I had to work with a child as part of an interview, and I was terrified. I was so nervous. I wish I could just sit there on a chair and spout off pretty answers, because that was so much easier and more comfortable to me. But what we need is therapists who can be comfortable and skilful in a room with children. So I love that shift that didn’t just accommodate your unique strengths or barriers with interviewing, it also gave them a better picture of what you would be like as a therapist.
Emily: One of my experiences was really unfortunate because I remember going for an interview that I really, really wanted, and I really wanted the job. And I actually asked for the interview questions to be given in advance. However, when I got to the interview, nobody knew. People were rushing around. It was getting closer and closer to the interview time, and I still haven’t received the written questions. I was just trying to fight off a panic attack. And then a minute before my interview, the interviewer came out, handed me the questions on the way in. And then I sat down. And my mind was just — I knew I wouldn’t get it, and I didn’t.
Meg: One thing that happens with places like this that aren’t willing or able to give neurodivergent people accommodations, or people who don’t understand the need for those accommodations, is they’re missing out on having all of the strengths that you would bring as a person who thinks differently to your job, and all of your insight that is going to be different than what non-autistic people might bring. So I want to talk about that a little bit. What do you see as some of your strengths as an autistic person?
Emily: Oh, I have so many! [Laughs] And I can own that today, because I’ve done a lot of work on myself, and I want to be a role model. My strengths as an autistic person — I have excellent attention to detail. Crazy attention to detail. It can be a blessing, and it can be a curse because it means that I can be quite rigid and perfectionistic, but I notice things that other people don’t. And another strength of mine is that ability to hyperfocus. Again, it can be a blessing and a curse, but it’s a strength, it means that I’m super passionate about stuff that I like. I am very, very hardworking, very diligent, very committed, very reliable. I have a great sense of humor. And, I think, I don’t know any autistic people that don’t have a great sense of humor. Yeah, I’m very honest and very authentic. One of my values is authenticity, which, thanks, Brené Brown; she’s my hero. Absolute hero.
Meg: So, if you don’t know who Brené Brown is, you should run and listen to her work right now, because I’m also a super fan. She’s a researcher, and she has a podcast, and amazing TED talks. She talks a lot about authenticity and vulnerability.
I want to jump in, too, and say that I love the way you started off your answer to this question just as a woman, that you said, “I have so many strengths, let me tell you about them.” And then you said, “I want to be a role model to autistic girls,” and I think all girls need to have role models like you, who are saying, “Sure, here are my challenges, and let me tell you what I’m good at.” That’s so lovely.
Emily: Yeah. And the thing that I want to say about that is, this journey has been relatively fast for me. So, I’ve had a massive growth spurt personally, professionally within the last three to four months, and I’ve gone through a lot of change. Let me tell you, from a girl that struggled for so long with self-esteem, feeling different, and always feeling like I’m on the outside looking in, like, “How do people do what they do?” You know, for me to be able to be at a point today where I can embrace my quirks and my difficulties, but I do have a lot of strengths, and I actually believe that today. I never used to believe that.
Meg: Let’s talk a little bit about what autism looks like for girls and women because autism does present differently and it can be missed in girls and women, and it presents some unique challenges as well. So, talk to me a little bit about autism in girls, and autism in women.
Emily: Okay. So, generally speaking — you know, this isn’t everybody, this is just generally — but autistic girls do present differently to boys, and I know this from my own experience, I know this professionally working with autistic girls and boys. Well, generally speaking in girls, they have high rates of empathy. They generally go undiagnosed or misdiagnosed because things like, they show more acceptable forms of special interests. So, things like books, psychology — I don’t know who said this, but autistic girls can be known as ‘little psychologists’ because they study behavior from a young age.
Autistic girls have more nuanced communication skills and behaviors. For example, they produce more cognitive process words like ‘think’ and ‘know’; they use more linguistic camouflage, so they often sound like their non-autistic peers. They use more social mimicry. That’s copying other people’s communication, copying speech patterns, gestures, and they use more compensatory strategies than boys, so things like social scripts or set phrases.
And autistic girls tend to prefer to have one or two really close friends. They also can have one sided friendships, and I know that from my own experience. I always used to feel I had invested way more in a friendship than the other girl. Prefer to play alone, they love their own company. They’re often tomboys as well. And I was very, very much a tomboy growing up. I used to play with the boys, which is quite common, I hear. And autistic females actually present with more diverse gender and sexual identities than in your typical populations.
So, in terms of like masking and camouflaging, this is a huge reason why girls go under-diagnosed, because they tend to hide their autistic traits a lot more. And so they monitor their own behavior, they modify the behavior, they suppress those autistic traits such as stimming, and they false eye contact. You know, all these things that I did for so long. One of the things that I used to do growing up a lot was, I was obsessed with books — which is another common thing with autistic girls — but I used to take on the persona of a character in a book or a film, and I would act that out in my daily life. I was constantly pretending that I was in a story, and just living out these fantasy worlds.
Meg: What’s the toll of all of this self-monitoring and masking on a person?
Emily: The toll of masking is absolutely huge. I can’t tell you how difficult it is to hold all that in, all day, and it often results in burnout, fatigue. This is where the borderline personality disorder traits might kind of present because it will start showing through shame, anxiety, depression, meltdowns, and sensory overload. And you know, camouflage, and masking, and unmet support needs appear to be huge risk factors for suicidality in autism. So, the consequences are huge for masking.
Meg: Since I started my business, I’ve had the privilege of speaking to so many autistic women who are also young professionals — OT’s, speech therapists — and I’ve just taken note that most of them have better social skills than I do. And, you know, at the beginning of this interview you said, “Just so you know, I might be looking down at my notes some. So don’t think anything of it if I’m not looking at you through the camera,” and most non-autistic people who I interview are also looking down at their notes but don’t bother to think about what my experience of that might be, and give a disclaimer for it. And it’s so considerate. I also acknowledge and recognize that holding all of those things in your head all day and in every conversation must also be a little exhausting.
Emily: It is absolutely exhausting. And it’s not always conscious. I’ll tell you right now, I am masking right now because I am trying to monitor what I’m saying, how I’m saying it, the rate in which I’m saying it, but I’m also trying to look at the webcam, but also make sure I’m looking at you. And this is just my internal process. Something huge that shifted for me since coming to terms with my own diagnosis — I’ve started to mask less, and it’s a lot better. [Laughs]
I’ll tell you, the people that I mask less around are autistic people. So, just an FYI, when I’m in work in my autism setting, I prefer hanging out with the autistic kids than I do with my colleagues, and that’s nothing personal to my colleagues. It’s just the fact that I don’t need to mask around them. I was laughing today because I spoke to a friend who’s autistic. I just said, “You know, I just prefer conversations with autistic people because there’s just no social niceties,” and I joked and I said, “You know what, if I walk into work and somebody asks me how was your weekend, like, it just gives me a panic attack, because I just — I would rather hang out with an autistic child who’s talking about speeds of tigers, and Pokémon; I would much rather do that then respond to questions about what I did over the weekend.”
Meg: Yeah. This takes us right back to Episode Two of the podcast where Damian Milton, who came up with this idea that autistic people aren’t bad at social skills, they just have different social skills that totally work within autistic-only spaces; and non-autistic people aren’t good at social skills, we’re just good at ours, and we’re pretty bad at using the social skills that work well for autistic people; and the importance of having those autistic only spaces.
And then, Dr. Kristie Patten, in that episode on strengths-based approaches, kind of rounded that up a little bit and said, “It’s not always autistic-only spaces, sometimes interest-based groups can work there too.” If somebody comes in and just starts talking about something or engaging you in activity that you love, that is easier and more rewarding than having to just socialize with non-autistic people.
The other debate that we were having in those early episodes was about teaching leisure versus teaching social skills. So, giving the opportunity for interest-based social participation rather than discrete social skills groups where we teach social skills; really, teaching autistic kids the social skills expected of non-autistic people. And you’re a speech therapist, and I imagine you get social skills goals handed down to you. What’s your take on this?
Emily: Okay, so, I’d like to answer this in two parts. The first part is, here’s the problem with teaching social skills, okay. It’s this thing about trying to normalize autistic children. A lot of pragmatics and social skill interventions are generally based on your typical groups, so they don’t take into account autistic traits. And it is essentially trying to get the autistic person to look like others. But, as we know, that’s encouraging masking, and masking is not good.
And the other thing is — you touched on it as well — was autistic people need other autistic people to interact with and socialize with. There’s a lot of research now that is basically saying that autistic children have better social engagement when they’re with other autistic children than when they’re actually with neurotypical peers. So, it’s really important to make friends and connections with the right people in the right peer group. I know, on my degree, there was a lot of talk around, “Oh, autistic children are not pro-social, so they don’t really have the desire for socializing. They don’t really need the same desire.” And it’s just a myth. It’s a total myth. The problem is that the people that are coming up with these theories and the academic researchers, and stuff like that, they’re neurotypical. They’re the ones that are kind of dictating and coming up with programs, and that is a problem.
As a society, we’ve been led to believe there’s one normal way to interact, right? And the thing that bothers me the most is that when I’m with neurotypical people, I see deficits in their communication, all the time. I know plenty of neurotypicals who lack empathy, who interrupt when you’re speaking, who can’t take turns, who make insensitive comments. I know plenty of these people and they’re not autistic. But I’ve heard the very same things come out of their mouths, that they’re talking about social skill interventions for autistic kids, and it’s just like, what? This is insane.
Meg: Yeah, it seems like there’s a confirmation bias there, that if we are taught and we believe that autistic people are, you know, lacking empathy and bad at social skills, then we look for those places and we confirm. And we don’t analyze ourselves under the same lens.
Shifting into thinking of autism as a culture is really useful for me. Not just as a culture, but as a totally valid culture that doesn’t need to be changed or shaped in any way. Because you would think if I was teaching culture to a group of people, I hope that I wouldn’t be teaching them, “Here is how you should act. You should act like a white, upper middle-class Christian person from the mid-western United States because that’s how you should act.”
We know that that is being culturally insensitive, and that we should say, “Actually, there’s a lot of different ways to be in the world, from so many different angles.” But we as a society have yet to acknowledge the validity of the culture of autism.
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Emily: Yes. Yes, yes, yes. So, this is something that I touch on in one of the resources that I’ve made about autism advocacy issues. And there’s a whole page there which I basically reference RCSLT and HCPC, who are the people in the UK who are sort of the ASHA (American Speech-Language-Hearing Association) of the UK. And in their codes and ethics, they refer to this — you know, we need to be respectful of other cultures, other diverse groups, and don’t discriminate. Yet there’s a lot of that happening with neurodiverse populations, right? So why are we doing it in those groups?
Meg: Absolutely. I think there’s a lot of things that could change in the education of speech therapist, OT’s, other helping professionals. I think there’s a lot of really important shifts we could see in research, and in academia, and also in practice. So, being a new therapist, what insights have you gained already about how you want to engage in the process of therapy with your autistic clients?
Emily: First thing to say is, I’m part of quite a lot of communities online that essentially are my supervision. So, I get a lot of support from other professionals who are following pro-neurodiversity approaches. I love a good visual, and I have visuals about what is pro-neurodiverse, and what is ableism. It’s just things like, we want to teach empowerment, build self-esteem, we want to promote autonomy using the correct professional language — so not using function labels, using identity-first language, because you’d be surprised the amount of people who still use that sort of terminology.
Meg: If people aren’t sure what you’re talking about with the functioning labels, the episode that aired a few episodes ago with non-speaking AAC user, Ido Kadar, he talked a lot about what labels like ‘high-functioning’ and ‘low-functioning’ did to him personally as a non-speaking autistic person. So that’s something that you can go back and check out if you’re not sure what that means.
Emily: So, instead of social skill interventions, per se, what we do is we want to target things like perspective taking of self and others. We want to target self-advocacy and empowerment. So, building choices, decision making, problem solving. We want to teach around language, abstract language, sarcasm, figurative language, and pragmatic language. Those are the general areas that I am trying to work around. Instead of trying to teach the kid to maintain a conversation, it’s just looking at it through a different lens, looking at the child’s perspective, and why is this important for them.
What I tend to do now is I try not to go in an interaction with a plan, okay, so I’m not going to barge in with a formal assessment and a list of things that I really want to do. What I’m going to do is, I’m just going to go in, sit down, start drawing, just be in the space, and then see what happens. And you’ll be amazed the amount of good interactions that have come out of this.
So, with one student, I just walked in and I sat on the floor — not on the chair — I sat on the floor, and I just started doodling. I ended up drawing a picture of an alien. We ended up having just such a great conversation. We came up with a story, just impromptu, and it was really funny. That was the most I’ve seen this student engaged. Even yesterday, when I was at work, I was doing some observations, and I just asked the child about their interests. As soon as they know you’re interested and not pretending to be interested, but actually curious and interested, they love it.
I do want to talk a little bit about intervention, right? Because I do want to explain a few things about the term ‘intervention’. It is a term that we do use so often as clinicians, and you’ll see it in documentation all the time, like, what is the intervention? What level of intervention are you doing? So, I do have a bit of a problem with it. I know it’s just semantics, but in the neurodiversity community, the word ‘intervention’, it’s associated with impairment-based, deficit-based thinking. And a lot of people do associate it with trying to change the person. I actually looked up the definition of intervention, and it means ‘Action taken to improve a medical disorder.’
Meg: Yeah, wow.
Emily: There was also a second definition, which said, ‘Interference by state in another’s affairs.’
Meg: [Laughs] That’s actually pretty appropriate for what we’re doing.
Emily: I feel like people associate intervention with this very traditional speech and language model whereby we’re taking the kid out of their natural environment to do one-to-one work for 50 minutes. The problems with this is we’re just working on that child’s skills, and trying to get them to change. And we know that generalizing of skills is difficult for autistic people. They could learn something in that session, but it may not transfer out of the session. So, the work really needs to be done in their environment, and trying to get those accommodations and supports in. So, trying to work with neurotypical populations to work on autism acceptance.
And I’m not saying that autistic children never need that direct one-to-one work. It’s about looking at my role through a different lens. There’s so much more we can do other than one-to-one direct work. Because I’ve worked with a lot of older children who often have histories of trauma and bullying. You know, they’ve had really difficult experiences in mainstream school settings before they get to us. It’s really important to create those opportunities for compassionate interaction, whether that is just eating lunch with them, or playing a game of UNO, or whatever it is. So, actually build that relationship. So providing as many opportunities as you can to show them compassion and understanding.
One of the researchers that I really like is John Gottman. John Gottman is a pioneer in relationship research. He talks about, “Trust is built in those small moments.” And that is so pertinent to my work. Because even in just like, a 10 minute interaction with a kid, I’ve developed something, and they remember you. They do remember that experience with you. It’s about encouraging special interests, not discouraging them and mocking them. And self-advocacy. So encouraging that, praising them for saying, “No,” and praising them for making a choice. And just being a consistent, compassionate adult. And none of that is like ‘speech and language intervention’.
Meg: But it’s probably the most important shift we could make. And it shifts how we see our job. Because a lot of people — and this comes up over and over — are coming into a space unaware of ourselves and what we’re bringing, and how our clients pick up on that. How we feel about them, they can tell whether we want to be there, they can tell whether we like and respect them, they can tell. And if we’re stressed and anxious and feel the need to prove for ourselves that we can ‘do interventions’ and make kids meet goals, that’s going to come through in our work too, and pushing too hard, too fast, and neglecting to build the relationship.
Emily: Yes, this is so relevant for me because, as I said, my journey to where I am now has been very fast and very recent. Before I really learned that was autistic, in the first few months of my job, I was practicing in a completely different way. I was constantly putting other professionals on pedestals — “They know more, what do I know, I’m new, I have no experience.” I was constantly trying to prove my worth and my competence. I was trying to show them, “Look all this information that I know. I can talk about linguistics, and pragmatics, and aren’t I a good professional?”
Whereas actually, the way I’m practicing now, I’ve gone through a huge transformation. And I mean, even yesterday, there was an example of, I did an observation over lunch. I ended up having this amazing interaction with the child. They ended up showing me one of their drawings. And the teacher afterwards said, “They’ve never shown the whiteboard to anyone.” And I just thought that was amazing. All I’ve done is show some interest.
Meg: That is amazing. I hope we’re speaking right to the scared and anxious new therapists right now who think that they need more sophisticated interventions. But really, they need to start with themselves and things they already know how to do. Be kind, be empathetic, connect. So, I want to shift us a little bit because your students, and all of our clients who are children, become adults. And I know you have a lot of insight about supporting adults in the workplace. What kinds of supports would you like to see autistic people receiving in general to be more supported, successful, and comfortable at work?
Emily: Well, first thing is, I have a statistic for you, which is 16% of autistic adults are in full-time employment in the UK. And I just think that tells us a lot about workplace adjustments and things like that. So in terms of adjustment, this is something that I’m still trying to navigate. Things like reducing the amount of sensory overload. For example, I really struggle with hypersensitive hearing. I cannot work in a place that is noisy, and I can’t do reports or admin if people are talking, there’s lots of conversations going on, if people are in and out of the room. So, it’s really thinking about what are my sensory needs, and what needs to change in the workplace because of that. It’s things like maybe reducing some of your hours, having a conversation with your manager, just trying to get them to understand. That look, I mask a lot, and here are the consequences.
I think a lot of it is to do with the interpersonal relational stuff, because it’s so important for autistic people to feel as though they’re part of a team and given feedback with sensitivity, not talked over, including the person in kind of conversations or interactions, having regular check-ins. A big one for me is having information presented that isn’t done off the cuff, or, “Here’s all the information,” and then they’ll lead me to it. Like, I really like to be organized and clear about procedures. I get confused if there’s different rules, or there’s miscommunications going on, which happens a lot in busy settings such as mine. There’s a lot that the workplace can do. There is a lot.
Meg: So, we need less social skills groups for autistic people, but we need some social skills groups for non-autistic people about supporting our autistic co-workers and employees in the workplace.
Emily: Yeah, and actually, another one of those is kind of around self-advocacy, because this this concept of tone policing — my whole life, I've been told that, "You're a bit blunt, you can be a little bit too direct, you're very opinionated." And as a result, I just spent a long time not having a voice, being super aware of how I'm coming across, how I'm going to say something. So, the thing around that is self-advocacy doesn't always look polite. If I'm saying something, and I want the person to hear the message, and not the way I say it, that's really important too.
Meg: I love that, especially as a woman. I was actually told in graduate school that I should frame my opinions as questions. [Laughs] Which is not what we're doing here on this podcast at all.
Emily: Yeah, and the thing is, if you're not an autistic person, you probably don't understand how difficult it is to, in that moment in real time, think about what it is you want to say, find the right words to say it, and think about the tone, think about the rate of speech, also make sure that you make enough eye contact, and you've got a bit of a smile — and you're also trying to manage all your internal dysregulation. This is what I spend most of my life doing. I've spent a long time trying to accommodate the other person's needs.
I'm a classic people pleaser, and a caretaker, and I just want the other person to feel okay. As a result, I don't get to say what it is that I want to say. This concept that I've just described is why I'm not great at interviews, because I'm really trying to think about what the answer is, what's the rule? What do they want me to say? And I've got to integrate all this complex information at the same time. It is super stressful.
Meg: That is a lot. And by the way, you're wonderful at this interview. I want to ask you 20 more questions, but I know we're running out of time, so I'm going to ask you just a couple more. So one is, what does your work of teaching self-advocacy look like in the schools?
Emily: Good question. Self-advocacy is so important, and it's about encouraging the child to make decisions in any way possible through the day. And it's about building that in very small moments. Unfortunately, there is a lot of trying to control the child, constantly trying to find ways to get around the child, get the child to do what you want to do, constantly trying to do strategies and get the child to do what it is that the adult wants to do. This is very important, particularly with pathological demand avoidant children, so PDA, because the thing is that kids know when you're trying to get around them. They see through strategies. They really, really do.
I do think as professionals, we can sometimes underestimate the amount that the person understands. So we want to teach empowerment, and making choices, and respecting, "No." It's so important. Because I see it quite a lot that adults don't respect, "No" If the child says, "Leave me alone," you need to leave them alone. But so often, that doesn't happen. And I've been guilty of that in the past, before I knew better.
Meg: They say, "Leave me alone," and we ignore and keep pushing, and then that escalates into some sort of behavior that is inappropriate for school. And then we say, "That wasn't appropriate, you need to get yourself back to the green zone," or whatever it is we say, whereas they were actually asking for what they needed in that moment to stay regulated.
Emily: Yeah. I mean, we practice a lot of zones of regulation and emotion thermometer. And I have heard an interaction not too long ago, where in the space of like, five minutes, the child had gone into crisis, because an adult just kept pushing and pushing. I just think it's so important that if the child says, "Right, leave me alone," or they contribute in class for five minutes, and then they say, "Right, I've had enough now, I'm not doing it anymore," we need to let go, right? Thank you. Like, good advocacy, you know. I just think we need to do more of that. I certainly want to do more of that.
Meg: That is really empowering. I love that shift away from the behavioral model where we say the purpose of that behavior was to get out of working, so we need to make you work more; and you're saying the purpose of that behavior was to advocate for yourself. So that's awesome.
Emily: I don't ever want to punish a child because they've not done something that I've wanted them to do on my agenda. Once you start to become aware of this concept of, "Ooh, maybe the child's advocating for themselves," you'll see it so much through the day. In my setting, I see it — I probably see it every five minutes. If I see a, inverted commas, 'challenging behavior', it might just be that they just don't want to do what you're trying to get them to do. And that's fine. They shouldn't need to. Adults need to spend less time getting the kid to do what they want them to do and more time encouraging the times when the kid says, "No."
Meg: Emily, we've talked about so many things today, you have so much incredible insight from your work, and from your life, and from your own exploration. But I want to end with just one thing. Of everything we've talked about today, if there's one thing you would like to see OT's and other professionals start doing or do differently in their work with autistic people, what would that one thing be?
Emily: That self-advocacy doesn't always look polite.
Meg: That's great advice. I love that so much. Thank you so much, Emily. I've learned so much from talking to you today, and I really appreciate you sharing all of your insight and wisdom with us. Tell us where we can find you online.
Emily: Thank you for having me. You can find me on Twitter, and which is @EmilioLees, so E-m-i-l-i-o-L-e-e-s, @EmilioLees.
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.