S2 Episode 10 with Jackie Schuld

January 22, 2023 01:24:30
S2 Episode 10 with Jackie Schuld
Disability Empowerment Now
S2 Episode 10 with Jackie Schuld

Jan 22 2023 | 01:24:30

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Show Notes

 Jackie Schuld is an autistic art therapist specializing in newly identified autistics and those who suspect they might be autistic. She is also an artist and essayist. She writes about mental health topics daily and pairs each essay with an art piece on Medium (@JackieSchuld). You can learn more about her creative and professional work […]
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Episode Transcript

Keith: Welcome to Disability Empowerment Now, Season 2. I’m your host Keith Murfee-DeConcini.Today I'm talking to Jackie Schuld, an Autistic Art Therapist. Jackie, welcome to the show. Jackie: Hello. Thank you for having me. Keith: So tell me what got you into being an artist. Jackie: Well, originally I wanted to go to Med School, but when I went that route I was like, oh no, there is no soul here. Sorry to Med Schools out there. But, I realized I cared far more about our minds and our hearts and our souls. And so, I didn't go that path. And that year I found, well, I didn't find it, but I met an art therapist and as soon as I knew that profession existed, I was like, oh my gosh, this is so me, because I've always loved art. I've always loved psychology and like science, and it was a way to kind of blend those to help people. Keith: So we met very recently not in person but via LinkedIn. I'm trying to remember which one of us found the other one. Doesn't really matter. I just like to know how people meet. So I introduced you at the top as an autistic art therapist. When did you find out you were autistic? Jackie: It wasn't until my mid thirties, so for me it was a, I found out late after I was a therapist, so, it was at first a shock when my own therapist suggested I might be autistic. She was very gentle about it, but I was just like, there's no way, there is no way. Keith: Oh, what did she say? Jackie: Well, at first she told me about a book called Divergent Mind. I feel for a couple months she was gently encouraging me to read the book. For those who don't know, Divergent Mind talks about neurodiversity and includes in the book autism, ADHD, highly sensitive, like many different types. So finally I read the book and the Autistic section, I was like, Huh? Like it talked about autism in a way I had never heard it talked about because in graduate school for mental health, we're really just taught the basics, like, you don't make good eye contact. You struggle to socially communicate, You just do all these things that I didn't identify with. But when I read what they had to say in the book, I was like, oh, wait a minute. Keith: And so how was that process of before you even got officially diagnosed, reading htat chapter, that section and having, I am not sure if this is the right phrase, by having a eureka moment of this is me, or I am pretty sure this is speaking truth to who I am or anything else. How was that and then did that lead you to get an official diagnosis, and then how was it integrating, a three part question, actually part four question, because my mind keeps going. So part one, how was it reading that section and having it speak truth to who you are and how you felt you were? Part two, did you get an official diagnosis and how was that given reading what you know about the chapter before? Part three how was it coming back and integrating all of that into who you are? And then part four, and I swear this is the last part, how was it integrating all of what you learned into your job as an Art Therapist? Jackie: Mm-hmm. Okay. Don't worry. I took notes. Keith: I mean, I am glad one of us did! Jackie: Yeah. That's one of the parts of me being autistic is my mind. I call it constellation thinking, where if there's one thought I can have like a hundred thoughts related to it. And so I often have to take notes otherwise, my mind is just like be blop blip and I forget things. Which I guess speaks to the first one that you asked me about reading the book and what was different about the book was it talked about the interior experience of autism. Most things I had learned in grad school were looking at the external behaviors of autistics, like I mentioned with the eye contact or stimming behaviors, things like that. Whereas the book was saying, and these are my words, not the book's words, but autism is, I like to describe it as an interior experience. It's like always having a background program running in your mind, analyzing everything you're doing, the world, like everything at the same time and so it was just interesting to hear someone talk about how it feels inside to be autistic. And that was what I resonated with and specifically, the book is geared towards women and how it presents differently in women. Talking about things like masking and how women are often very good socially, like autistic women learn to integrate socially and well, we call it masks socially and like, pretend like we're getting along and good. And I guess that's what a lot of my life had felt like, frankly it was like pretending like, oh, make sure I'm making eye contact, make sure I'm smiling, make sure I'm showing the right cues. It felt like nothing I did was actually natural that I was having to think about it and do it on purpose. And that was the part of the book that I was like, oh, and I don't know if I'm allowed to swear on this show. Keith: By all means. Jackie: Yeah, but really I was like, oh, fuck . And so it wasn't so much though like aa-ha moment because I was really confused because it was like, but I've never read this about autism. Like, why didn't I know this? And I just went into a deep dive of wanting more information about autism and to fully understand, and that's another autistic trait actually is needing clarity, needing to understand. And there's not a lot of good, clear information out there, and even my therapist, I think, was pretty new to her understanding of autism. So I know she didn't have the depth or the ability at the time to answer the questions I had, such as, how do I know if it's my trauma or an autistic characteristic or this, you know, there's just a lot. That kind of leads into your second question about an official diagnosis. I did not pursue an official diagnosis. I am self-identified. Keith: Really? Jackie: Yes. So in the neurodiversity community, we feel it is valid to self-identify. Meaning you just realize like, hey, this is who you are and you don't need that to be confirmed by a doctor. My choice to do that. I guess after I read it was just so obvious. So part of me was like, why waste my time? Especially given my background in mental health. Second, there is a huge, huge issue in that most doctors are educated beyond the basic symptoms of autism. And this is why most women, why one of the reasons many people like myself go unidentified or undiagnosed. As well as this is what frustrates me. I have sent clients of my own who I was like, oh my god, they're totally autistic and they wanted a diagnosis, and an official diagnosis needs to come from a medical doctor. And so I like, for instance, sent a client and they said they were not autistic. And I looked through the tests they had done because I got the whole report. And it was just like a joke to me, like it was clear. Sorry, I'm still very angry about it. So maybe it's just that you really have to search hard and ensure that the doctor you're going to is educated in autism and how it presents in women in order, like because I even know another therapist who went for a diagnosis of autism and they said, you don't meet the criteria. I'm sorry. And so some doctors won't even, like, even if they're educated in neurodiversity, they're like, well this is actually the official criteria though, and you don't meet it so I won't diagnose you. Keith: Well, that's depressing and angering. Jackie: Yeah. And so I think that's why I now choose not to go for a diagnosis. It's part like, okay, well I'd have to find someone who is educated at that level and then I'd have to pay, which, as you know, out of pocket in ridiculous amounts, like thousands of dollars. And then part of me kind of doesn't get a diagnosis as an active resistance, as a part of saying like, no, I don't endorse the medical model. It is broken. I'm not doing it. Keith: Please explain as much about what you mean about that as you possibly can because that is a very important point. I feel. Jackie: Thank you. So the medical model looks at autism as a disorder. Saying like, hey, here is what's wrong with you. Here are the parts of you that don't align with neurotypical behavior. Neurotypical is the word for anyone who is not autistic, or, well, that's not fair. Who's not neurodivergent . So what's quote unquote normal, whatever that is. Keith: You mean besides a cycle on my dishwasher? Jackie: Exactly. Yeah. And so for me, like there are so many positives to being autistic, and there are so many traits that, okay, the outside world might judge as negative, but if you put me in a different environment, it's actually not a negative at all. And so it's, I don't like the medical model saying, here's everything wrong with you and I feel that by not getting a diagnosis, I'm saying, hey, I don't even think your viewpoint is valid. Keith: Okay, and so what was it like self diagnosing and then coming back and integrating that, not mixing part of you because it has always been there, it just took awareness and other information to really become self known. You were already an art therapist, and so how was it taking the very personal part of yourself and putting it into your business. How I followed you I will say I found you, what drew me to your job description is that, and I am trying not to pick up my phone, I am trying to just remember it. An art therapist specializing in late term diagnosed Autistics and that was very intriguing because I had never really heard that specific job description. So talk more of the process of re-identifying, and that may not be the correct term, apologize, but re-identifying with yourself and making that one of the core tenants of the work you do professionally. Jackie: Yes. I'm trying to think how I can answer this concisely, but for most of my life, I've, well, my adult life, I've gone to therapy and I've tried to address the things I've been feeling inside. And so after doing significant amounts of therapy, I was like, why am I still not like other people? Like, why do I still get exhausted from being around others socially? Why do I still have all these highs and lows I can't figure out? And learning I was Autistic was like, ah, ahhhhh, this makes sense. It made everything make sense. And I no longer saw myself as broken in some capacity. It was like as soon as I could understand, oh, this is just how your brain works. I could suddenly shift my life to work with my brain. I no longer like beating myself up. For instance, most therapists see six to eight clients a day. There's no way in hell I can do that. I get so tired and I'm just exhausted and like I used to. So I was at the time seeing only like five clients and I was still exhausted. And I was like, why can't I be like other people? And so since learning I'm Autistic, it's like, oh, well this is why like, and okay, this is your capacity and you're just gonna honor it. So, you know, I don't see more than three clients a day and that has made my life so much better. Like, I don't have the same ups and downs I used to anymore because I'm honoring my needs essentially. Keith: So if I may get a little more personal. How did your family react? What are interpersonal relationships like? Being a late term Autistic has, I would guess, would have to be a different experience, of playing catch up. If you were diagnosed in your teens or early school years, but I don’t know, that’s why I am curious. Jackie: Yeah. I would say by far it's easier to tell new people in my life that I'm autistic than it is to talk to my existing friends and family. And that's because they already have preconceptions, you know, they already know me and they already have pre-existing notions of what Autism is, and so they're like, Jackie, Keith: Hold on. Did you just say that people have pre-existing notions of who other people are? Shocker! Continue please. Jackie: I mean, and I guess a little grace for them too is like, I get it. I myself was like, there's no way in hell I'm autistic until I learned more. And so really with the people in my life, their desire to know more about it is what shapes how much we talk about it. Like for instance, my sister and I are very close and learning I'm autistic has led to us having many deep discussions and her getting to know some of my interior landscape that she never knew. Like, she was like, Jackie, I never knew these kinds of things or what you thought about, or, I never knew you felt this way. And it was like, so I've appreciated the chance to share that and to be closer with her. And then I have some family members who like, do not give a shit and act like I never told them. Keith: Wow. Wow. Okay. So a bit of a mixed bag. Wow, and so going back to newer people in your life, how do they react? Jackie: My new friendships have been so much, so different because I'm upfront from the beginning about being autistic. Like I'm at a point in my life where I'm like, I am done trying to be fake or like fit someone else. I just want to be me. If you do not like me, that's okay. We don't need to be in each other's lives. And like that energy has meant like the people I'm with truly know me. And it's not like I have a lot of friends. I don't have a lot, but the few that I have are like, they feel really, really good. Really good in ways that are new to me. Keith: So what did you study in graduate school and why? How did it lead to you discovering at that point, a very snapshot view of what autism is? Jackie: So I knew I wanted to be an art therapist, and so I looked for programs in Arizona, which is where I live. So I attended a program that was a Master's in Mental Health Counseling with a Postmaster Certificate in Expressive Art Therapy, which I know is a lot of words. So basically mental health counseling, art therapy is what I did. But I think what most people don't know about this level of education is that it is broad. We are not taught specifics. We are just like, hey, you take a class on assessment, here are all the assessments for all the stuff. And then like you take a class on diagnoses and you're like, look at all this giant ass book and all the diagnoses. We are not actually learning much specific knowledge that really comes through our internships and what we choose to study on our own. So that's why I just had a broad overview of autism. Like, I don't know that was ever even mentioned in a single one of my classes. I just read about it in a few pages in a book. So, I guess I wanted to be upfront about that. Just be so that a lot of other people understand like, what therapists actually know because I mean, and this goes to one of your other questions about me being an autistic Art Therapist now who works with late identified autistics, because when I came to my realization and like, okay, I'm definitely autistic, but I need some help figuring this out, I looked for a therapist, like I wanted an autistic therapist, I wanted someone else who got it and I could not find one. And that was so frustrating. Like, and so finally I worked with an autistic coach, but coaches are not legally allowed to go to the depths that therapists are, right? Like I wanted to ask some weird questions like, hey, how do I know if like this is a trauma response or my autistic way of being and like things that like cause us to talk about trauma or the hard things in life and like I really needed someone with the knowledge of a therapist and then the lived experience of an autistic. And I couldn't find it, at least not as for anyone listening to this, if, for mental health counseling that is state regulated. So you have to see a therapist in your state. So this is not to say they don't exist out in the country but in Arizona, I just couldn't find one. Keith: So after you'd self-identified was there some bitterness or some of the emotion that you had to wrestle with that stemmed from had I only been diagnosed, or been more aware in my teenage years, or my young adult years. I mean again I don’t know and that is why I am asking. Because I mean, I was diagnosed with Cerebral Palsy years before I actually knew what it was, and it's non progressive movement neurological disorder, that's with me throughout my entire existence. So, and if you don’t get it before or by the age of three you don’t have it at all, you can’t. So I can pass it down to my future children, so I am mildly experienced, it's coming from a vastly different place, that this was always baked into my operating system and so I have become very intimately aware of it from the get go. How was that not having that experience for you, and did you have to wrestle with any, you mentioned trauma several times, any wrestling with had I only known now, had I known it then? Jackie: Yeah. There is a lot there in that question. Keith: I'm a curious intellectual, it's what I do. Jackie: It's okay. I like deep conversations. I think one thing I get self-conscious about as an autistic person is that I can kind of fill up a lot of space. And so I'm always like, how do I say this concisely? Yes, it would've vastly changed my life if I had known. However, I don't think our understanding of autism was evolved enough when I was, you know, a child, a teen, that I would've gotten the support I needed or the support or understanding I needed anyways. Like I think right now is a really great time to find out your autistic because there's like, so much like with social media and with like the research, there's just so, like, I call it the autistic awakening happening right now. Yeah. It's just like suddenly people are realizing what this is and like we're, there's communities and there's a lot of support and even like I recently flew with United and they start their flight by saying like, we're gonna board anyone with disabilities. And I was sitting there and I was like, wait a minute, that's me. And I had this moment where I was like, do I go up? Do I not? Do I go up? Do I not? Do I? Kind of like being like, am I taking advantage? I don't know. But like, I hate crowds. It makes me super stressed to like be in that cramped space and all the noise that's really loud. And finally I was like, just do it Jackie. Just do it. I went through and I said, I was like, hey, I'm autistic. Am I allowed to pre-board? And she was so nice and she was like, you get right on. And I was like, okay. I was like the second person on the plane and I sat in my seat and I sobbed, like, it just brought up a lot for me like how far my life has come. Like, okay, I don't like loud noises and I don't like people and I actually like someone cared. And someone was like, oh, this is easier for her to just get on the plane now. Yeah. And, but I still sobbed because it brought up complex feelings about like, do I deserve this? Yeah, yeah. But I'm sorry that was kind of a sidetrack, but the point being something like that wouldn't have existed when I was a teen. Yeah. And so I think for me, I haven't really been upset about, I didn't know, I think I see my past as valuable to me and my experiences, while painful, are very informative. Like they make me who I am as well as an exceptional therapist. In terms of like a lot, I have a lot of lived experience. And so really though, when I learned I was autistic it, at first I was extremely, extremely sad. Because I didn't know if that meant I would never be able to make friends on the level I wanted. I didn't know if it meant I would never be able to be in a romantic relationship. Like there was this part of me that was like, oh, if this is how I am, does it mean I'm always gonna be alone? Yeah. Which, anyone listening, no, it does not. But I hadn't yet started adjusting my life to work with my brain. So I didn't know what was possible at the time. Keith: Wow. That's deep. I keep going back to the autistic awakening. That's such a great phrase. And if you ever write a memoir, which I really hope you do, an Autistic’s Awakening, that's the title. I mean, I would totally read something that provocative, is the wrong word, but that eye-catching title, it’s wow okay, I need to flip through to really. That title is really catchy. Jackie: I will add, there actually are a lot of books out there written by late identified autistics. And so late identified is the word for someone who finds out they're autistic, whether that be diagnosed or not. And so that's why I like it. It's kind of an inclusive term. I think I will say, getting to know more autistic. It's like, god damn. Like they are industrious people, suddenly I'm like, I'm outta my league guys, I'm outta my league like Jesus. Like they're always, I mean, given that we all have our own special interests, like they're doing some cool shit and it's like, wow. Wow. Keith: Yeah. Wow. And so you mentioned earlier that you could not find in the state of Arizona, which is the state we both reside in, at least for the moment, an autistic therapist. Did you find a autistic community? Jackie: No. However, I haven't really looked for a local autistic community because I don't like groups. So it's not like I wanna go hang out with people. Instead, what I've been doing is just pursuing the things that I'm passionate about, which is writing about autism and writing about private practice. And in that I've met people and the people that I resonate with I am like, hey, let's get coffee and coffee being a virtual coffee. And so, you know, we meet online and then I'm like, oh my god, I like this person. And so that's how I've expanded my friendships is just we have a you know, another autistic person with a shared interest. That's really for my other autistics, that's so key in making friendships. Like we don't do very well if we're just like, so how are you? Who are you? Tell me if we have something to connect over, like I mentioned, a special interest. So for instance, a lot of my autistic friends and we connect over being business owners or being therapists, something like that. Then we are like, oh my god, we could talk for days. Keith: Yeah, yeah, yeah. Wow. So what do you do in your free time? Because your job seems so fascinating and your lived experience seems so fascinating for all over the years. But you can't work all the time, you can't study all of the time and so. Jackie: Yeah. Well, I'm glad you're asking. Sorry, I guess I just cut you off. Let me let you finish. I'm sorry, Keith: That's fine. Jackie: Okay. That's another one of my issues. I get excited about something and I'm like, Huh. And then I have to reel it in. Reel it in Jackie. But what I was thinking about is another, one of the ways I used to think I was quote unquote broken is that the things I love about my job, I would also do in my free time, which according to our culture is like, oh no, you don't have life balance. Like if you, you're not separating your work and your personal life. But my brain doesn't really make a distinction like neurotypical people do. Like I like psychology, whether I'm being a therapist or sitting at home and reading my book or like for instance, like this is the book I'm reading right now called, well, I guess people can't see me, sorry, The Anti-racist Business Book. This is what I read in my free time. I'm curious to know more about this and like, because I run a business and so someone else could look at me and be like, oh Jackie, you never stop working. And it's not that at all. It's just what interests me. So, I guess in my mind I delineate work being the time I spend with clients. To me that is like my work hours and then the rest is like me time. So for me, my brain is very alive and active in the morning. And so I like to wake up early and I like to write and I write about autism. I write about private practice, I write about mental health. And so I do that in the morning. And then in the afternoon I go to work. And then at night I like to have no plans so that I can just give my brain a break. And that's when I do art and make collages or I paint or I just, or sometimes I just do a puzzle or I don't have to do something. But I like the free quiet time. So like, I guess in some way everything I do connects to art or therapy, but it's not fueled by like, oh, you have to make your business better. It's just fueled by what interests me. Keith: So you. You talk about, or you did talk about your friendships and how there are not a lot but they are very meaningful to you and recapping with your sister has really deepened your sisterly bond and there are some family members that couldn't care less, and don't want to pretend that you didn't give them new information. But what, and I hope I am not being too personal here, but what about dating and how have partners reacted to the self-identified autism. Jackie: Yeah. I would say my dating life is probably one of the most dramatic changes since learning I'm autistic. Keith: Traumatic, or dramatic? Jackie: No, I'm sorry, dramatic, dramatic. Don't worry. That's funny. No I just, I really struggled in romantic relationships before because I guess I didn't fully know myself and I had all these ups and downs and you know, obviously if I didn't understand how to regulate my time and how to like, you know, there's just a lot that I think impacted romantic relationships and now it is so much, I have so much more clarity about what I need and so it's not impacting my relationships in the way it used to. As well as like, so I've been going, well, I was going on dates, you know, because I was like, I wanna try to date someone. And I was, at first it was like, ooh, when do I tell someone I'm autistic? Like, at what point do I let this out of the bag? But finally I did meet someone that I was upfront from the very beginning. And he actually read as soon as he heard I was a writer, he read all my essays on autism. Keith: Damn. Jackie: I know, right? I was like, that's impressive. Like he's interested. And I am so glad he did though. Keith: He has a lot of free time. Jackie: Yeah, I mean it just, I'm really glad he took the time to do that though because it was like, he already understood so much about me and so we've been dating for a while now and like it is the easiest relationship I've ever been in. I don't have to fight about things like, hey, I just need some alone time. Or, hey, like I am zonked. I have no energy. I need to take a nap. Like, I think before people in my relationships would take it personally. Yeah. like, oh, what did I do? Are you upset with me? Or like, hey, come on, stay up. Like it'll be fun, you know, they'll try to get me to go past my limits and like, this person, no, understands and respects like what I need. Keith: So for all the female listeners out there that are wondering where you met this mythical man? Jackie: Oh, he will love that. I do say that but I feel very lucky. We actually met on eHarmony. . I, Oh God, I hate that that's where we met, because I hate online dating. Keith: Amen sister. Jackie: But I did see his profile and he had talked about researching bugs and I was like, that's really cool. Keith: Yes it is, but, okay. How do you get from that passion project, to hey I am really interested in this writer slash therapist, let me read everything she has written about autism. Which she has by the way, I mean mythical man is. Jackie: Yeah, I think for his privacy, I won't make guesses as to why, but I think, you know, we just connected. We were just real with each other from the beginning. And I did reach, I was the one who reached out to him about like, tell me about your bugs . You know, and so it was just from the beginning we were very open and transparent and like I said very real with each other about very significant life events. And again, for his privacy, I don't wanna share, but we share a lot of similar life events. Keith: That's beautiful. And so he didn't make a lot of preconceived notions about autism. He actually took the time to read your essays, unfortunately I have not, and so, and you are, for lack of a better term, authority on what it is like living with autism. Jackie: Yeah. And I write prolifically, like it's my special interest. So I mean, I write a couple essays a day on the things that, I guess I'm saying the things I wish people were out there saying. Keith: Yeah. I mean, why I am so impressed by your partner though is that he actually took the time to read, understand and try to relate to you, where you could have met anyone else who would have gone with the oh I know all about autism. I know what people would say, yada, yada, yada. And I mean, we're recording an episode. But I would like to think that you're a pretty social person as long as you’re in the zone, for the lack of a better term. But in studying what I've studied, which is disability studies since the podcast, there are so many preconceived notions about disability and I will just come out and say one, that people assume that people with autism are antisocial, avoid eye contact or think they are better than everyone and the list goes on and on and on. So business wise that has to be hard enough, interpersonal and dating wise, that is a whole other mind field that no one should really deal with or have to deal with and so in the basic graduate work, all of those assessments, did you run into those preconceived notions of a very rude understanding of what autism actually is versus how much more personal it became later on and have you run into people judging you without really knowing you. Like oh she’s antisocial, or her eye contact is off so she must not like me. Jackie: For the most part, I think people keep their opinions to themselves when we're face to face. Like, I can tell, well, I'm making some assumptions here, but like, if someone is genuinely interested and wants to connect in a comfortable way on it, you know, they'll ask me questions, and then there's the people that they kind of go cold and they don't say anything at all. And like, I don't know what they're thinking but like I pick up on verbal language and not verbal language, sorry, nonverbal language very well. And like I sense things very well. And so usually it feels like, oh, this person's disconnecting right now. So I've had those experiences and usually I think they're trying to not say something hurtful. Right, Is my guess. They're like, I'm just not gonna say anything at all. Yeah. But I have had some people more, so people that don't know me, say, like, for instance, I went to the doctor, it was a dermatology appointment and the assistant checking me in, I just said, hey, I wanted to make you aware I'm autistic. You know, I have some specific requests I like when I go to the doctor and she goes, oh, I would never know looking at you. Or, you know, I've had some comments like that where like people are, like, another person told me, like, I think it was the office manager at the apartments I live at when I finally mentioned I was autistic, and they were like, oh wow, you're doing really well. Like good on you. So yeah, I run into different things. I did have someone, oh yeah, someone, I mean, since I'm writing publicly, and I do of course get comments from people like, you're not autistic or, that's not an odd, you know, people wanting to tell me what I am or I am not. And that, but I mean, they don't really know me. So I am learning to develop a thicker skin. I'm not fully there yet, but that's the goal. Keith: Yeah. I was taking part in a study recommended to me by a fellow advocate who was autistic and the graduate student doing the study asked me three times during different parts of the interview to discourse my autism status, and I am like hey, I could tell you I was autistic, that would be a lie though, here is what I have. Then my therapist was like I can understand why she was asking you because if you break down every part of Cerebral Palsy, you have all the social anxiety and all of that. You can plug it in, which it's neat. I guess. I don't know, but as I was facing all those questions I was like, if I come out right now then I have not only got a personal crisis to wrestle with, but the fifteen plus autism advocates are going to have a serious issue with me falsely stating that I have autism when I do not. So yeah, she asked me three different times, tried to make it a gotcha question, and I am like, if i was autistic, don’t you think i would have told you that. Email correspondence, yes you did get my contact information from a fellow autistic advocate, or a disabled advocate, but still it’s just like no, I mean you can ask me it again and again and again. And the last time I was like look if I say something I am not a part of your research and I also have to tangle with my friends who are going to have an issue with me. I mean that is why I bring up the preconceived notions and the notions that your partner avoided, because there are so many people out there that would not avoid them. That would actually relish in trying to tell you about your disability. Oh you are self-diagnosis, you don’t even have a medical diagnosis, what is wrong with you Jackie. Jackie: You know, I, something I would like to say on this that's interesting is when I go through the world, I'm very aware I'm autistic because of the sensory overwhelm or how I regulate myself, things like that. But like when I'm with my partner, because he's so understanding and accommodating, it just doesn't even cross my mind, which is the weirdest experience. Like, it's lovely but it's definitely really different for me. Keith: It's weird. But yeah I just said it’s also lovely because you do not feel and this is an assumption pardon me, you do not feel like you have to hide anything about yourself from him, because you have that multi layered connection, and it all stems back to him taking the time to read every essay because he was interested in you. It wasn't a diagnosis, it was you. And that is why I keep saying, if you have told me I would be saying this now three or four times, I would be like, no no I am going to be totally professional here. No but that is the most important thing that you should hope everyone will find. It is someone who actually takes the time and effort to get to know them and leave all the judgement or the preconceived notions at the door. Jackie: Yeah, and it's like then like, so yes, I have unique needs and so does he in different ways as any human, right? And so suddenly it's not like this big deal. For instance, we go to a restaurant and he's automatically like, oh, hey, can we have that quiet table in the corner and you know, I sit where the light isn't right in my eyes. Like it's just like a natural thing. Instead, if I was going there by myself or with the people who didn't understand my needs, you know, I might be like, oh, hey, I'm sorry. I need a quieter table. Or, hey, that the light from that window is too much for me. Like it's, instead of it becoming a bigger deal, it's just like, oh, this is just a simple need I can meet. I try to reciprocate, you know. He sets a high standard, but I'm getting there. Keith: He certainly does. It sounds like it. And so as we wrap up, tell me more about if someone is coming through your door for the first time, back to business mode, but even in business mode you can’t really separate because you have your own lived experience. They have theirs and I mean, I would assume there would be some connection that would have to happen or tried to happen. So let's say. I'm not the person giving this interview. I walk through your door and I actually do have autism. How would you approach me in terms of a new client? Jackie: Well, before someone actually walks through my door, I do a consultation with them to hear where they're at. Every, you know, all of us are at different points in this journey and I usually, people who find me now as a therapist have found me through my autism writing. And so now almost my whole practice is slowly autistic adults who are newly identified. And so I see where they're at in that journey and kind of like what I listen for, what stuck points they're having. For instance, some, it's like with their family, you know, they're like, how do I get my partner to, you know, things like it could be a partner or it could be like, I don't know what is autism and what is trauma? Or I don't know what is masking and what is actually me. And so I listen for where they're at and then kind of design what we do in therapy based on what they're hoping to get out of it for their life. Which often like that, broadly speaking, that process looks like we go through like all of the main categories of autistic characteristics. So they fully understand themselves and how their brain works. And then we look at, okay, how can you best shape your life to work with your brain? And that's where we really look more at like, okay, what are the reasons they came to therapy? Like, I mean, some common ones are, you know, wanting more friends or being extremely depressed. I see a lot of, before I became an autistic Art Therapist specializing in Autism, my specialty, what I had put on my website was highly intelligent women with overwhelming emotions and thoughts. Like, I just felt like that's my jam. That's who I worked really well with. What I didn't realize is I was actually attracting autistic people, like unidentified autistic women, because most of the time for women it's, they're, and this is obviously, I'm speaking in broad terms here, but intelligence helps, well, not helps, but it's why you're so good at masking a lot of the time. If you make it to your thirties, forties, fifties, and no one's identified that there's something going on here, it's usually because you have some skills to help you accommodate. And so that combination of someone who's highly intelligent, but also has highly overwhelming emotions and thoughts, which is like what it's like inside as an autistic. So I guess I was saying this because like I was already working with some who were already pre-diagnosed autistic, and so it was like I was almost already doing the thing in my practice without even knowing it. And then as I came to my own identity, I could really start to see it and I was like oh, and then I took time to really step back and discern, like, I guess because of my own experience of going through integrating my autistic identity, like, okay, if I'm going, I really wanna work with these people, my fellow autistics, because I know what it's like, like the support I wish I had and the all of that. And like, what do I wanna provide or how do I wanna show up. I feel like I'm rambling a little bit here, but yeah. Keith: So if there are any inspiring advocates who are just making their way to working professionally in disability advocacy, what would be some action steps that you would recommend for them? Jackie: You know, I might, am I allowed to have a question for you? Keith: Yeah. Yes. Jackie: One thing I've been wondering about is like, what is advocacy? Like at what point is what you're doing considered advocacy? And I thought you might be the person to answer that. Keith: Uh, well thank you. You give me way too much credit. Now who’s in the hot seat. Jackie: I know if it's too much on the spot I am sorry. Keith: No, no. I mean, advocacy. Well, just like that adage that I assume you've heard and even told a person or two. Great. You met a person with autism. You've met one person with autism. I don't think there is any one correct way to do advocacy or one wrong way. I'm a writer by trade and the original genesis of this podcast is that no one would see the episodes, or hear the episodes, I would just write them up and put them up on a website or blog or whatever. Then I realized very acutely, then I realized that disability advocates do not like their stories told by anyone other than them. So I had to readjust my whole plan for, and I am so glad I did because this is very comfortable for me to do, even though earlier this year I would be like huh, yeah, no. Because I was that unaware and insecure. And so I also work with a New York theater company who specializes in promoting and hiring disability talent. And so acting is another way via Zoom that I am able to do advocacy. So long and short of it is there are so many ways to do effective advocacy and a lot of people do multiple different forms of advocacy, whether they know it or not, whether they planned it or not. I mean you said writing is a passion of yours, that;s another thing we share, but you're also a therapist who specializes in art therapy. Those are three different forms of advocacy, if you take them apart. But writing, acting , and podcasting, those are three different forms that often get combined in my mind unless I try to unpack that. Jackie: Yeah. Well, it's stealing from you then, for other people doing advocacy work. Like it really just seems like doing what naturally comes to you. Like you and I we write, so we write, you know, like that's one. Though, I have one more question and I'm sorry, but advocacy and activism, that's another thing that I'm teasing out. Like where do, I know they overlap, but when does what you do as an advocate mean you're an activist? Keith: Well, that's. I am familiar with both of those terms. How I feel, what I do, nd I also teach at some local churches around my area on disability issues and the bible and what not, that’s another form. I get what I do is both, but it's like the advocacy is easier to approach and easier to understand at least for me and to represent in my life. Like even though I got my masters degree in Disability Studies, and technically that makes me a Disability Scholar, I shy away from that term. Now, if I had a PhD I probably wouldn't shy away from that term as much, because the way I shy away from the scholarly label in term is because I am always growing and developing and learning and the field of Disability Studies is, compared to an academic field like English and Psychology, is brand spanking new. And so the scholar label, if people want to use it, that’s fine. So I am much more comfortable in the advocacy realm. I would say activism or what we associate that word with most is political or social activism, or projects and lectures. There is no clear cut answer at least in my mind that I can do to differentiate between the two. I think the podcast and how I describe it, a podcast about disability empowerment and activism, no advocacy, sorry. I am getting my terms confused. Has really helped me become grounded in my own work in the field, but the terms I use and the work I do may not be appropriate or feel right to another. Jackie: Yes. I'm so glad you said that because that is something I feel strongly about. Like as you mentioned, when you've met one autistic person, you've met one autistic person, and like I specialize in this tiny little field of autistic people, like those who found out later in life. So that, like I mentioned, usually means a higher level of intelligence and a different lived life experience than say, an autistic individual who found out at age two. You know? And so the things I write don't apply to someone like that. And that, you know, I have some people who will comment on my writing that like, this isn't true of autistics. Like, you forgot about blah, blah, blah, blah, blah. I'm like, hey, just because I'm saying this about this subset of people doesn't mean I'm denying all these other things. Like I know that two truths coexist. Keith: And so the last question, it is a two parter but hopefully that two parter that morphed into four parter at the beginning will actually be easier. This two-parter will be easier to understand. I like to think that this podcast attracts listeners both with disabilities, and those who have yet to discover that they have disabilities. But I would be completely naive to think or to assume that both groups of listeners would get the exact same thing out of listening to us. So as the interviewee who gets the last word. What would you hope that the disability advocates or activists would get from listening to this episode and what would you hope that the listeners who have yet to discover their disabilities would get out of listening to this interview? Jackie: Yeah, you do ask deep questions. I hope someone will get out. I feel I've been pretty transparent in this interview about my journey and I think that's probably what I would hope for anyone else who is disabled. That it's like at no point are you expected to have it all figured out and that like, yeah, I was really depressed for a while about it and then things got better and then, yeah, I encountered some challenging times like that, it's, you continue to evolve and that's okay. Like you don't have to have it all figured out. And that I just keep trying to honor my needs that are present and make the next best step. I guess that's what I would hope others would get out of it. Keith: Well, Jackie, thank you for being so authentic and transparent and vulnerable with what you've said on this episode. I hope this is only the first time that we do an episode together because I am sure there is a lot more that we could talk about, particularly if I find some of your writing, talked up without meaning to, that I am very curious about a fellow disabled writer and what they write about. Thank you so much for what you do, it is a small subset of autistic people but regardless, they deserve and need the support as much as anyone else. Before meeting you, before stumbling upon your LinkedIn profile, I had no idea that this was a job. But you can’t know everything, you can never know everything. But I am so glad that I was able to learn as much about this and from you as I was, because now if I run across anyone who is going through a late self-identified diagnosis of autism, I know exactly who to point to. And I am sure that you know others that if your schedule is full, you could refer them to them. It's all about building connections and if you can’t use the connections you have to support others, then what is the point of having connections in the first place? So, Jackie, once again, thank you so much for being as transparent and fallible as you have in this interview and I really hope that you will come back for another episode soon. Jackie: Thank you. I'll have more questions for you. Keith: By all means, take care! Jackie: Alright. Keith: You have been listening to Disability Empowerment Now. I would like to thank my guest today and you, the listener. More information about the podcast can be found on visit on disabilityempowermentnow.com. The podcast is available wherever you listen to podcasts or on the official website. This episode of Disability Empowerment Now is copyrighted 2023.

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