Interview between Speaker 1 (Meg) and Speaker 2 (Joy)
[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.
[Intermission begins]
If you’re a professional working with kids on the autism spectrum, I know you set out to work in a way that reflects your values. But far too often in our work we don’t realize how big our blind spots are. We may find that our model is medical rather than social; neurodiversity is suppressed rather than celebrated; our language is outdated; our interventions are compliance-based rather than strengths-based; and we may not be contributing positively to our clients’ sense of autonomy and identity.
That’s why I created the free 5 day OT & Autism challenge. When you register for the challenge, you’ll get daily emails for 5 days with articles and videos that are absolutely paradigm-shifting. And you’ll get access to the most incredible Facebook community where everyone reflects on their takeaways from the learning assignments. It takes fewer than 30 mintues a day, and you’ll be surprised to find what changes it inspires in your work.
Is your work aligned with your values? Are you ready for the challenge? Visit learnplaythrive.com/challenge to register.
[Intermission ends]
Meg: Hi, welcome! I’m so excited to share today’s interview with you. You’ll hear me speak with you Joy Johnson, who is a black, autistic behavior specialist who does have a background in ABA. So she brings a very different perspective in many ways to the podcast than we’ve heard before. Joy runs a business called Spectrum Support where she partners with organizations, individuals, and families of autistic people. Joy has a Masters in education and a Masters in psychology, and is currently a PhD candidate. She brings to her work her own experience as an autistic person, as well as her previous work experience in clinical settings, nonprofits, and schools.
Before we skip to the interview, I wanted to define a couple of terms. You’ll hear us talking about masking, which is basically when autistic people have to try and hide their autistic traits in order to fit in. I’ll also use the phrase “code switch,” which has come to refer to the ways in which black people often have to “act more white” to lessen the impact of being black in a racist society. Joy was so much fun to talk to that we just kept going long after we finished recording the interview. I hope you enjoy listening to her as much as I did. I learned so much, and some of what she had to say surprised me. Okay here’s the interview with Joy.
Meg: Hi Joy! Can you tell us a little bit more about what you do at Spectrum Support?
Joy: So I do behavioral services. My degree is in ABA, but I don’t call myself an ABA therapist because I don’t — I believe the practice needs to be reformed. So while my strategies are based on ABA, they’re not necessarily how they’re traditionally practiced as it stands currently. So, yeah, I use ABA strategies, and I help people target things like self-injury, aggression, and skill acquisition, social skills. So, just the run-of-the-mill kind of like behavioral services. But I also will serve as an advocate if needed, like at school IEP meetings, or sometimes for adults if they help at their jobs. Just in various capacities as an advocate.
Meg: That’s awesome. You wear a lot of different and very important hats, it sounds like.
Joy: Right.
Meg: All right, so on this podcast, many of my autistic and non-autistic guests have spoken about why they avoid many behavioral strategies in their work. And I’d say this is especially true for strategies that promote masking or suppressing one’s autistic traits to appear more neurotypical. And I first came across your work on Instagram, in a post you wrote called, “Black autistics, we don’t have that privilege.” And it seems like you were really speaking to that message. Can you talk to me a little bit about what you meant in that post, and how privilege, race, and oppression might play into a family’s choice of therapies, or therapists’ choice of their approach?
Joy: Right. So, to clarify, sometimes people think that I mean that we’re not allowed to stim, which is not true. Like, ask them, and I’m 43 years old. I mean, in the sense that we need to acquire the social skills that teach us how to advocate and disclose when necessary. So, not that you can’t stim or be unapologetically autistic, but you need to know when it’s appropriate to let people know that, “I am autistic. I may have these issues.” So in that aspect, social skills are very important, because you need to acquire them via behavioral therapy. While Speech and OT are great, we all work together, it’s just some things that are more targeted in the behavioral realm. And so I always tell people, “We all work together, all of us are necessary.”
And a lot of times, the autistic population will want to take out the ABA portion. And ABA is a science about the problem. The problem is the subjectivity of the social validity, meaning that neurotypicals dictate their stimming is to be targeted eye contact, and in fact when those things are more harmful to us than they are helpful to treat.
Meg: So I want to clarify when you say, basically, that autistic people need to have that in their skill set, especially autistic people of color, black autistic people. Do you mean they need the tools to self-advocate and say, “Hey, you need to know I do this because I’m autistic,” or that they need to be able to mask in that situation?
Joy: No, no. I don’t think you should ever mask. It’s not healthy, so I think that you should be able to say, “I have sensory issues, so this is why I’m doing this. I have autism. I’m diagnosed with autism,” but never teach a child to suppress their stims. Because suppressing their stim can cause way more problems than it would to teach them just how to advocate and tell people, “Hey, this is what stimming is, and this is what I do.”
Meg: I see. So that piece of self-advocacy, is that what you see is missing in a lot of the work that white therapists are doing, or that white autistic people are advocating for?
Joy: And I’m not going to necessarily blame the therapist, sometimes it’s the parent. You can only do what the parents allow you to do, and I think parents also need to know that. Just like a therapist can only disclose to a child they are autistic unless the parents give them permission. The therapist can also not make them not stim, or do eye contact, if the parents says, “Don’t do that.” So the parents have that power, so it’s more of educating the parents and letting them know that you can still receive therapy that incorporates autistic values and culture, without compromising who you are, without compromising who your child is, rather, and still get social skill acquisition which is something that you really need.
And white therapists, I would say that they probably don’t think about that as much as I do when I’m needed. Especially like a black autistic boy. I’m gonna always make that be a part of the repertoire, that I teach them how to interact with the police, specifically, not just people in general. That’s like a specific behavioral goal that I have to make because it’s so important in terms of who we are, and how we are perceived sometimes by law enforcement.
Meg: So when thinking about teaching a black autistic child, specifically a black autistic boy, about interacting with the police, what are some of the really important components of that usually, for you?
Joy: It depends on the child. If the child is not vocal, you want to make sure that they have their AAC or device on a neck strap or something that allows their hands to be free so they can still put their hands up, because I’m going to always teach them to make their hands visible. To have some sort of tool, like an information card on them, just in case they go non-vocal if they are vocal. To explain what autism is, but also give them — if they are vocal — to give them that ability. And not necessarily a script but prepare them, and recite things like social skills training. Like model it for them and then have them say it back to you, like, “What would you say?”, “I’m autistic. My name is so and so. I would like to remain silent until my parents come,” because you have to be careful, too, with adults.
They may have intellectual disabilities, and sometimes because they’re adult, they’re put in situations where they’re coerced or unethically put in a position to incriminate themselves. And so, you need to teach them specific language, like, “I want to remain silent until my advocate comes,” so they know not to — you know, some confession that they didn’t do comes out because, unfortunately, police officers are notorious for that. So those have a specific thing, like making sure that they know that they need to ask for an advocate, and stay silent. And if they’re asked, “Do they understand their Miranda rights?” So it’s rehearsing that, and them saying, “No, I don’t understand,” if you think your child does not understand that, or adult.
Meg: What are the implications of saying, “No, I don’t understand my Miranda rights”? What happens then?
Joy: So because competency is a legal construct. Just like insanity is not in the DSM, autism is in the DSM, but it doesn’t make you incompetent. So it depends on the state that you’re in. So if you say that you understand, then that means you’re competent, and from there on forth, anything you say can incriminate you. And so you don’t want a child or an adult who may not understand that to say, “I understand,” and proceed. Because when they proceed, yeah, you can rebut it and fight it in court, but if you have to do it in court, why are you doing it in court, they got to stay in jail. You know, it’s not like you say, “Oh, he didn’t mean that,” and then you pull him out. You’ve already done it, and then you have to wait for the court system to do however long it takes. And God forbid, they don’t have bail, or the bail is too much and you can’t afford it. They’re in jail until they can prove that they’re not, and then you have to prove that they’re not competent, which is the very first thing.
Meg: Yeah, this is really important. So the things I heard you say are if they have some sort of communication device, it needs to be where they can access it with their hands out. I haven’t thought of that piece before, that’s really important. Having the scripts of, “I’m autistic. I want to remain silent until my parent, my advocate, whoever, comes,” and likely saying, “No,” when they’re asked if they understand the Miranda rights.
Joy: Right. And if sensory issues aren’t a problem with their neck, even if they are vocal, I would still put their ID on a lanyard around their neck, so that way they don’t have to reach in their pocket. They can say, “My ID is there and the info card is behind the ID,” so they’re not reaching for anything suspiciously, or making it seem like they have a weapon of any sort. And sometimes you panic and forget to tell the police, “It’s in my pocket.” If it’s around your neck, it’s physically around your neck, and they can see you if you reach for that.
Meg: Got it. Okay, these are great tips that I think we all need to be thinking about. Are there any other scenarios that you’re thinking about specifically for your black autistic clients, other than interacting with the police?
Joy: Um, just in general, sometimes just from my own personal experience. A lot of times, black people that engage in unusual movements that are not typical — sometimes people just tend to see them as either on drugs, or something is wrong, so just being able to advocate in those situations and just tell them who you are, who they can call, is just something that I think about. And just making sure you prepare them for situations where they are likely to encounter law enforcement, like the airport, court building, you know.
If you’re going to these places, you need to also prepare them because they’re going to be touched, if they’re tactile defensive. So just depending on the child, you really need to go over things that you know that they’re likely to do or not do. Like a lot of us like to hug. We’re affectionate. You can’t hug a police officer, you can’t touch a police officer, stop. Just seeing those things in public in certain buildings, you’re going to see police officer dogs, because there are drug dogs in court buildings and airports, and you just need to know not to — kind of let them know it’s not appropriate to touch these because they’re not pets.
Meg: Yeah, that that is so important. We have talked a lot about moving away from social skills and moving more towards expanding leisure interests, and I hear you saying that for a child’s safety, they need to know some of these expected social skills in some of these situations, because of the assumptions that are going to be made about a black child in our culture. So we’ve been having a lot of conversations on this podcast about why and when to use, or not use, behavioral approaches versus other approaches. And, you know, I think people will probably listen to this and say, “I could teach those strategies without using a heavily behavioral-influenced framework.” Does that sound…
Joy: Absolutely. The only reason that I think — of course, my degree is in ABA — but ABA is how we learn, period. It’s just reinforcing what you want to see, and not reinforcing what you don’t. You can absolutely do that in a natural way, because that’s how we learn everything in life. We take an aspirin because our head hurts, and that’s positive reinforcement — well, negative reinforcement, because you want relief of the pain. You learn how to do these things and you can totally do it in a natural way, and that’s the way I prefer to do it because I feel like it’s more generalizable. When it’s more contrived and intervention-y, it doesn’t seem to be quite as effective.
That’s the reason why even if you’ve seen like the social stories I do, I don’t use cartoons. I use real people. I try to make it as less insulting as possible. Because I know what that feels like when people try to quote-unquote, “Dumb things down.” Just because I respond or may appear a certain way doesn’t mean I don’t understand, and I can be taught the same way everybody else is, you just have to do it in a way that I perceive as the same way, you know?
Meg: Yeah, that makes a lot of sense. And I hear you saying that you’ve taken a behavioral approach, but sort of removed the goal of, “My job as your behavioral therapist is to make you less autistic.” And that’s the critique that we’ve been hearing a lot on this podcast, is that —
Joy: My job is to help you navigate through the world as an autistic person, and my personal experience helps me to be able to understand that a little bit better. But no way should you ever change who you are. But you need to just navigate, learn how to navigate through the world perceiving things the way that we perceive. But you don’t have to change it, because that’s not effective. Eventually, it’s gonna cause more problems. It could be a temporary solution but it’s not going to be a long-term solution, and you’re gonna end up back at the drawing board all over again. I know this from experience. So it’s just counterproductive. Might as well teach somebody to be authentically themselves, and how to navigate the world as an authentic person.
Meg: Would you be interested, or willing, to share a little bit about your experience with different therapies as an autistic person?
Joy: I’m 43, so mine are very, very aversive. Mostly punishment-based procedures, and that’s part of the whole reason I’m in here. I’m not upset or — I guess, I think I’ve moved past the trauma of it all. I just understand that what science, medicine, everything, evolves, and I just happened to be in that early stages. So I’ve had a lot of electroshock therapy. Very aversive behavior modification programs, where they try to teach you to just be quote-unquote “normal”. Normalization programs.
So a lot of the things that I went through were very experimental because it was in the early 80’s, late 70’s, you know. My diagnoses also changed, so I know not to put too much stake in that either. I’m literally in that age — ABA came about when I was in high school, so I was in that age where everything kind of changed. My original diagnosis was childhood schizophrenia, then it moved to PDD-NOS, and then it moved to autism. So I’m literally like, you know, I don’t put too much stake in labels, I don’t put too much stake in what people see as like ‘interventions’ because I do realize that things change.
I just try to do what’s best, and the only reason I lean towards ABA is because I know that I like to be reinf — like, I’m reinforced by what I do, because I love what I do. So it’s really that general premise that keeps me there, but what I don’t agree with is the way that it’s dictated. It’s subjective and dictated by neurotypicals; and the eye contact, that stuff, needs to be changed. Needs to be reformed. And our voices need to be statistically validated because we’re the key stakeholders, and we are the consumers. So we’re the only — that’s the only field where consumers are not taken into consideration, and it doesn’t make sense to me.
So that’s the only reason why I stay in the field, because I feel like the field needs change. And I know that it always starts from somewhere. So my hope is that it started from there, but I hope it ends with us being in charge, meaning autistic people. I hope to see more clinicians, I hope to see all of that more. Because we are our best role models. People think that I’m amazing, and it’s not true. When I work with kids, I’m not amazing, I just connect. I just can relate to them. And people are so surprised, like, “Oh, you’re autistic,” and it’s really not that surprising. It really makes more sense than it does, and it’s nothing amazing about me. If they were more autistic people that were clinicians, it would be just as effective because we can relate to us.
Meg: Absolutely. I’ve been interviewing autistic OT’s, psychologists, researchers, and I’ve learned more from them in the last few months than from anyone else. And it’s really learning about my blind spots, and it’s very hard to see your blind spots or to see your perspective until you work at shifting it. I don’t know how to experience the world as an autistic person, you do. I have to learn what the experience of an autistic person is.
Joy: Yeah. I have sensory processing disorder. I’m known as being like a sensory decoder, but it’s not really a — it’s not a decoder for me, it just comes naturally because I’ve learned how to help myself not engage in self-injury or aggression through replacement behaviors. And it’s not as — sometimes people are like, “Oh, they’re biting, get a chewy.” A chewy is not always going to satisfy their need, because if they’re chewing on clothing, then that’s not the same sensory input as rubber. You really have to think about making it as close as possible without being injurious, or harmful, or not hygienic.
Meg: Yeah. Okay, I want to veer back to some specific behavioral strategies, because we talked about this in the last episode, and also in the first episode. Some of the strategies that come up are planned ignoring, or ignoring a child’s behavior in hopes that they will do it less, using reinforcers, token boards, and hand-over-hand assistance, where using your hand to move a child’s hand to get them to do an activity that they’re not otherwise doing. And we’ve heard a lot of voices opposing these strategies on the podcast. I’m just curious what your position is.
Joy: So, let’s do them one at a time. What was the first one?
Meg: Yeah, planned ignoring.
Joy: Planned ignoring… I don’t. I don’t subscribe to it. I don’t think we should ever ignore a child. Like, I do get not reinforcing certain behaviors, but that doesn’t mean you have to ignore them in order to reinforce something, especially when functional communication is an issue. If they have a problem, like they’re not vocal or just have a problem with functional communication, period, you don’t want to ignore them. You want to prompt or redirect them to communicating and helping them to find a way to communicate. You can’t just ignore it and expect the problem to be solved. What was the next one?
Meg: Using reinforcers and token boards.
Joy: So, token boards, I don’t have a problem with it as long as they are not using like — I don’t believe in using edibles. That’s never an option for me. I don’t believe any human being should have to work for food, especially when their neurotypical peers can get a full-sized cookie and you got them working for crumbs. That’s insulting. I think that a token board is essentially — sometimes we need a visual reminder, so sometimes I will use that visual reminder, like if we’re trying to make steps towards completing a task. I don’t do compliance, but I do do task completion. Because in the real world, you have to learn how to complete things in order to get paid in a job. Anything that I target is going to generalize over to real life.
So a token board can help you to earn; like you’re making small strives to earn the bigger goal, which is what you do with your paycheck. Like you have to get three paychecks to pay your rent. So that I don’t have such a problem with, as long as it’s not a picture of food sitting there. And I do it only with younger children because it’s age appropriate. But when I’ve seen it done with teenagers, we’re going to move to more of an allowance kind of thing, where I like it to be age appropriate and not insulting to the person’s intelligence based on what people believe their development level is.
Meg: Okay, so you use external reinforcers as long as they’re not food, they’re age appropriate, and they’re sort of natural, not overly contrived.
Joy: Right. Like activities. Like I do this for myself. I have to get these treatment plans done and then I can get on Instagram. So I don’t put it in an actual token board, but I’ll monitor myself and I’m like, “Okay, Joy, you can’t Instagram until you finish these,” so it’s more activities, but not food or access to a person. I don’t like when people do that either because that should be more organic, and you can’t reward a person with a person. So it’s more like working towards things like, “You can’t be doing this 24/7, but you can have 30 minutes of this,” and it’s like you would anybody else. You’ve got to learn how to organize your time and structure your time, so if it’s done like that, yeah. But if it’s like we’re working for half an M&M, that’s a no go.
Meg: One of the big critiques that we’ve been hearing is, a lot of times therapists use the token board sort of in a vacuum of other clinical skills, because they don’t really know how to draw from the clients strengths, or how to incorporate their interests, or how to visually structure an activity so that it’s meaningful. And so then what they’re left with is just this compliance-based approach of, “Well, I don’t really know how to organically get you invested in this activity so I’m going to say, ‘You do this,’ so that you can get this thing you already want.”
Joy: Well, that’s often because people try to dictate to us what leisure activity is. Like, it really, really depends on the child. If the child or the adult likes ripping paper, that’s leisure for them. You can’t tell me that my goal is to put together a puzzle for leisure when I’m telling you I like ripping up paper. I like credits. I like to stim from watching credits. So, for you to say, “Well, we want you to watch a movie which was the goal,” I don’t like watching movies. So how can you tell me that’s my leisure? My leisure is watching credits, period.
Meg: This is a segue, but I want to ask you about the credits thing while we’re here, because I was interviewing Kristie Patten, who’s an NYU OT Professor, a few weeks ago. And we were talking about not withholding a child’s interest from them. And I asked her what she thought about if the child was very young, and their interest was screen based. Because I’d always said, “Yeah, we shouldn’t withhold interests, unless it’s young kids and their interest is on a screen,” and other people and now she have said, “Whoa, whoa, whoa. You don’t know what they’re learning from that screen.”
Joy: So you want me to tell you how you were wrong?
Meg: Yes, please.
Joy: So, I was in certificate track. I wasn’t allowed to graduate from high school, so when I was around the age of 26, my husband convinced me to take the GED. And I’ve just always had a hard time learning. And I’m like, “I don’t know how I’m going to retain this.” And he was like, “Let’s put it in credit form.” So he put my learning materials in credit form. And just like I memorized everybody in the credits, in the cast, I memorized all of my learning.
Meg: That’s amazing. Do you know, when you started watching credits, how old you were?
Joy: Probably since about like three. And I’ve always done it.
Meg: What were you taking from it? Can you tell me about it?
Joy: To be honest, I always wondered who the people were. I used to make up stories about the gaffer, the best boy, the people. You know, not just the actors. I was more interested in them. And then as time progressed and as I got older I was able to — because I didn’t have the internet when I was little — but I could look for things on the internet. My husband’s a filmmaker, and that’s how I found my husband. But he was just like — he wrote me back. I wrote him, he wrote me back, he made me credits, and 20 years later we’re still married. So it was a special interest.
Meg: And it led to a wonderful marriage.
Joy: Yeah, and it also — people didn’t realize it at the time, I think, people would have realized it now — but I was echolalic, and I used to repeat what I read. So, like, the caterers. When I was hungry, I would script the caterers. Nobody figured it out. But nowadays people probably would, like, “Oh, she’s hungry because she’s talking about the caterers, the catering companies.” So I also tried to use it as functional communication when I was really small. But I keep it on all the time, I always have credit going when I’m studying. I just like the way it feels when I can look up and visually feel that. And I don’t like Star Wars credits. I like the scroll and nice music credits, and I don’t like when they stop the credits and put the movies in between the credits, because that makes me angry. [Laughs]
Meg: Yeah, I could see how the credits would be soothing.
Joy: Mm-hmm. So I like that. And I won’t watch movies. Like I won’t go to the movies. I’ll come after it. Like, somebody texts me when it’s ending, I’ll sit at the end, and then I’ll go to dinner afterwards, but I’m not going to sit through the whole thing.
Meg: That is a really interesting perspective shift, thank you for sharing that.
Joy: But it’s never gotten in my way. And as a matter of fact, to me, it’s thoroughly beneficial because I got the best husband in the world that makes me credits now, you know, so, yeah.
Meg: Yes, that’s a testament to letting kids build on their strengths rather than taking them away. Okay, I’ll bring us back around. The third behavioral strategy that we’ve talked about before on the podcast is using hand-over-hand assistance, or moving a child’s body, especially when it’s for compliance rather than they’re like struggling with a motor task and they want help. What do you think of that?
Joy: That’s assault.
Meg: I agree.
Joy: I feel like that’s assault. And especially if, you know, a lot of us are tactile defensive and don’t want us to touch you anyway. That’s assault and I don’t see how it’s really helping us do anything if you have to make us do it, if it’s not independent in the first place. You can’t stand behind us for the rest of your life to do it. I would feel like that was very violating. If somebody came into my space and tried to touch me and make me — I would view it as aversive, and that ruins what therapy is supposed to be. It’s no longer therapy if I start feeling violated in the process of it.
Meg: Yeah. Yeah, we’re taught to use hand-over-hand assistance in school.
Joy: I know.
Meg: Without a lot of nuance.
Joy: My Master’s is in ABA. I worked as an RBT in clinics while I was doing my hours, so it was very, very uncomfortable for me initially, because I did a lot of things that we were targeting. And I’m like, how — I asked them out flat. And I’m like how, why. And I remember a supervisor, one time, telling me how disturbing it was for him, and it made me feel so — I didn’t know how to be in the workplace anymore. I would be very self-conscious, like, can I not stim?
And that’s the reason why I work for myself. Because I have my own standards, and I don’t have to worry about what people think about me, if a certain parent will find me, or that I’m not their type of therapist, they don’t. So I don’t have to worry about having weird confrontations with parents who don’t want me to tell their kids that they don’t have autism. I’m autistic, and for you to act like it’s a shameful thing in the household; like a lot of that, it was really hard being a clinician and finding people. Like, “Oh, don’t tell them, don’t mention that word,” like, what do you mean?
I can’t do this thing, because I think unless the child knows who they are, they can’t move forward in life without self-awareness. So how can we hide this from them? So I just decided I have to build my own type of lane, and people — luckily I’ve had a good response. People who like me, like me, but people who I’m not for, I’m just not for.
Meg: Yeah. You know, most of us will never have the experience of being autistic as therapists, but I do think that’s a good reminder to sort of listen to our gut, or our instincts, about things that don’t feel right. Because I said, when I was in graduate school, that I didn’t want to work with autistic kids, or ‘kids with autism’ is the language that I used then. And in retrospect, it was because the behavioral type approaches that I had seen didn’t feel kind or respectful and I couldn’t, wouldn’t, do them. And what I said at the time was, “I’m not good at that,” but what I meant was, “That feels really uncomfortable to me.”
Joy: It was really hard for me because I hadn’t been in America for 10 years. I came back and I decided I wanted to work with my population. And I got my degree in ABA and immediately started working in the field. I wasn’t as comfortable as I am now. It never came up in conversation in Germany. I never — in Germany, I was just Joy. I never had to describe myself as being a black autistic woman. You know, in America, you have all these labels. For lack of a better term, I forgot that I had to be all of these things in America. So I’d come back, and I realized that after work, my co-workers are talking about the people we work with. I’m like, “You guys work with these children and these adults. If you feel like this about them, why would you work with them?” A lot of them just do it for the money.
Long story short, in the beginning I was very emotionally distraught. I quit a lot of jobs. I think I was just seven different clinics the first year, because literally, I would just almost be in tears. And then I felt it necessary to disclose. So the only reason I’m actually as vocal about my diagnosis now is because I started telling people immediately when I got hired, so I wouldn’t get offended. So I wasn’t this comfortable and I wasn’t, I didn’t feel the need to always tell people about it until I came back to America.
Meg: So are you saying compared to Germany, in the United States you feel more pressure to mask as an autistic person and to code switch as black person?
Joy: Exactly. I don’t even have the mental capacity to code switch anymore because I stopped doing it in Germany. So that’s another reason why I work for myself. I’m tattooed, I sound like I’m from Chicago. I don’t have the mental capacity to be something I’m not anymore. And I had been like that for so long in Germany, that I came back and I forgot that I had to put on a different voice for work. I don’t do it anymore because I just don’t have — I think that I can be just as effective, who I am. Period. I shouldn’t have to change my voice. I shouldn’t have to present myself in a way that I am not. Like I should be able to be me. And in Germany, literally, most of the time people call me a schmetterling, which is a butterfly. But in Germany, I was just me. And we were always the only black family to live in our block. Never had any problems with racism. Moved back to America — immediately.
You know, so it’s just like in Germany, every child has an IEP. Not just the children that — and they don’t call it IEP, but every child essentially has that, ’cause they look at the whole child, not just the disability or a label. They look at what your child is capable of doing. Which is the reason why we moved there, because I wanted — I have an autistic child, and I didn’t want her to be raised here. So I stayed there until she finished high school. And I’m like, I’m not bringing her back here, because I didn’t know — I knew that she wouldn’t be treated fairly. There are things in place. Laws. And it looks good on paper, but in real life, it doesn’t pan out for what it’s supposed to be.
Meg: Yeah, we have a lot of work to do here. I would love for us to be a country where they say, “Oh, you’re such a butterfly.”
Joy: Well, you know, Tesla, they intentionally hire autistic people. The post office in Germany is largely probably 8% autistic. And it’s a great job, because for people who may have lower cognitive abilities, they get a routine. They get to see, so they get to be socialized every day. They love doing what neurotypical people may feel like it’s mundane, like routine movements, and it’s fine for them. And the whole neighborhood knows them. And it’s just like, okay. And they get paid an actual real salary of at least €85,000 a year, so they can afford to live. And they’re not given these pushing carts that Giant or, you know — like that burns me here.
I have so many adult friends that I’ve met since I’ve been here and they think all they can do is internships and volunteer. But they’re giving these people free labor. But these programs, these non-profits, they keep the program full and then the partnering company gets free labor. So it’s convenient for both of them. Meanwhile, you have an autistic person who’s been conditioned to think that they can only do volunteer work and interns for their whole life. I’m talking people that are like 40-something years old that I’ve met. And I’m like, no. And I literally have managed to get them a real job, like the next week. And they’re like, “I never thought I could do that.” I’m like, “You could do it the whole time.”
People have just been making me feel like — so it makes me very angry. Because I’ve worked for quite a few non-profits here. The mission sounds so beautiful. And then I get in there. There are no autistic people working in there, number one. Number two, they don’t practice what they preach. They’re happy with keeping us sitting there counting poker chips all day long because it’s something to keep — you know, it’s really insulting. And it’s hurtful to me. So that’s why I had to venture out on my own, because I tried, I really tried.
Meg: So for folks who are working with adolescents and adults who are looking for jobs and getting ready for jobs, I hear you saying that we should have autistic adults on the team figuring out how to make that happen. And that we should presume competence, that we should exactly how this can be.
Joy: Exactly. And not just, “Oh, we can get you a job sorting mayo, we can get you a job pushing carts,” like those type of jobs. But what if this person has other special interests that you get? I had a client who people assumed would never work. Loved CB radios, had the mental capacity to learn more about other radios, and long story short, he got a job at the department. But before then, it’s like, “Oh, we can only go to the radio museum and he can have it at home,” like, he loves this! Let him do it for a living! Let’s teach him how! This is crazy. It makes no sense to me.
I’ll give you an example, I liked to write on people’s skin when I was a kid. It sounds crazy but I was that little kid who used to always — you would come home and you would have something drawn on you, and you would be like, “Joy drew this on me.” I was a tattoo artist for seven years in Germany, because that was the first thing. I’m like, “Okay, how can I take something that I love doing, and make it into a real job?” And not only was I a tattoo artist, I tattooed people who were self-injurious, that got sensory input from cutting. So it was like a socially acceptable way to self-mutilate, and that’s what opened my mind to replacement behaviors. But you can always find something.
Because my mom was like, “You can’t be a tattoo artist,” and I’m like, “Yes, I can.” And not only was I a tattoo artist, I was a good one. And I had a really loyal following and I loved it. And I excelled at it because I loved it, and you know how special interests go for us. So I was really passionate. I was at every convention. In Europe, everybody knew who I was, I was the only black female tattoo artist in Germany. But it was just like, it was so me.
I really feel like I’ve never had a job. I just take my special interests and I make it into something that works for me, and I’ve had many jobs. Now that’s probably what people may consider a deficit, but I’ve had to be okay with, “I know I won’t do anything for 20 years of my life.” When I’m done with something, I’m just done. But you just have to adjust to who you are. And I realize that for me, I’m just going to be different things.
Meg: Yeah, that is such a testament to the doors that may be opened by not limiting access to strong interest, but instead letting a child learn about and grow their strengths.
Joy: And I’m gonna give parents another one. People always say I’ve had the craziest jobs but they’re all really — I like to stim from shiny things. My undergrad is in fine arts with a concentration in fashion design, but I never worked in jewelry. But because I was so passionate about art, a jewelry company hired me to be a diamond buyer. All day long I got to stim from diamonds, and I did that for two years in Hawaii. It was the largest fine jeweler in Hawaii, and I got to stim with diamonds all day long. So you just kind of think outside the box, like nobody thinks about being a diamond buyer. I enjoyed it.
Meg: So for our adolescents and adults who aren’t finding that connection and making that opportunity on their own, that’s such a call to action for us, that we can say, “You love this and you’re good at this. What can combine for you?”
Joy: People are limiting them by just doing jobs. Nobody wants just the job. We all want to fulfill a passion and a purpose, and that’s what I want for all of my clients. I want them to experience what I’ve experienced. I’m gonna get teary. ‘Cause I remember I thought I couldn’t do anything, and then to realize that I could I, was like, I can be something. And all my life, all the people trying to act like they were supportive, is the genuine feeling like, “Oh, but she can’t do that.” And that’s hurtful. And I don’t think that people realize that, because we have dreams and ambition, just like everybody else and just because we don’t say it, or cannot say it, doesn’t mean it’s not there. And I feel like it’s parents responsibilities, and clinicians, because we work in the field so we’re committed to them, to find that and not to just settle.
Meg: There are so many powerful points in what you’ve said today. I’m gonna help us narrow it down to just one takeaway: If there was one thing from our talk today that you want to see OT’s, especially white non-autistic OT’s, start doing or do differently, what would that be?
Joy: Do a self-audit and ensure that you are not doing your black clients different than you are your white clients. And you’re not chopping up their behaviors to where they come from, or the color of their skin, or implicit biases that you may have associated with black African Americans.
Meg: Thank you. That’s great. We all need to do that. Thank you so much. Thank you for your time today. Where can we find you online?
Joy: joyfjohnson.com, or Instagram @joyfjohnson; everything is Joy F. Johnson.
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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.
