Episode 62: In-Between Phase of an Autism Diagnosis: From Asking to Assessment [featuring Jak Levine-Pritzker]
Jul 11, 2024
Show Notes
For adults who are questioning if they are Autistic, ADHD, etc., there is often an exploratory and somewhat confusing phase where they feel in between two different identities.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Jak Levine-Pritzker, ADHD coach and founder of Authentically ADHD LLC, about the nuances of navigating identity when exploring the possibility of an autism diagnosis, as well as the effect of facing internalized ableism and external input throughout the assessment process.
Top 3 reasons to listen to the entire episode:
- Learn about Jak's personal experiences with the questioning of fitting into or out of diagnostic criteria, especially when examining overlapping traits between ADHD and autism.
- Gain insights into the complexities and nuances of the assessment process for neurodivergent conditions, exploring both the quantitative and qualitative aspects that go beyond standardized tests.
- Discover the evolving understanding of neurotypes, including the impact of self-identification on assessments and the relevance of organizing principles like monotropism and flow state.
As you reflect on your own journey or support others in their quest for clarity, remember to ask questions, be mindful that neurodivergent experiences and diagnoses are full of grey areas and overlapping traits, and if you choose to seek a diagnosis, try to approach it with an open mind.
More about Jak:
Jak Levine-Pritzker(she/her) is an ADHD coach, mental health advocate, and founder of Authentically ADHD LLC. With an online community of over 90k people and a robust coaching practice, she has empowered thousands of ADHDers to heal their internalized ableism and shame and design a life that *actually* works for their brains using a strengths-based approach.
Jak is passionate about normalizing and depathologizing what it means to be human, especially a neurodivergent (and queer) human. She shares openly about her own lived experience navigating ADHD, OCD, depression, PMDD, and grief. She truly believes that people with ADHD are not disordered or broken and can live wonderfully successful, fulfilling lives when given the proper support, resources, and environment to thrive.
In what feels like another multiverse, she received a law degree from CUNY Queens with clinical training in mediation. She is from upstate NY and currently lives in the Santa Cruz Mountains with her cat, Zen.
Check out Jak’s online membership (authenticallyadhd.com/membership)! It is an online community for 18+ ADHD adults. There are coaching calls, socials, body doubles, weekly/monthly resets, and more. It is a lovely community and sliding scale starts at $19/month but no one is turned away for lack of funds.
- Website: authenticallyadhd.com
- Instagram: instagram.com/authenticallyadhd
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Transcript
PATRICK CASALE: Hey, everyone. You are listening to the Divergent Conversations podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.
MEGAN NEFF: And I'm Dr. Neff.
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Hey, everyone. Welcome back to another episode of the Divergent Conversations podcast. Megan and I are joined today by Jak Levine-Pritzker, she/her, is an ADHD coach, mental health advocate, founder of Authentically ADHD LLC, with an online community of over 90,000 people and a robust coaching practice.
She has empowered thousands of ADHDers to heal their internalized ableism and shame, and design a life that actually works for their brains using a strengths-based approach.
Welcome to the show. I know you're a big fan. We're excited to have the conversation we're going to have today because it sounds like you are starting to question whether or not you are also autistic. And that is coming up for so many ADHDers more and more and more and more often. And we are excited to wrap up our ADHD and autism series this way.
So, thank you for coming on and making the time. And now I'm going to awkwardly transition to Megan.
MEGAN NEFF: I think that felt like a hot potato to Jak. And then, you pivot it to me. Okay [CROSSTALK 00:02:38]-
JAK LEVINE-PRITZKER: I'm glad you named it, though.
MEGAN NEFF: Where's it going? Yeah, yeah. Jak, I'm excited that you're here. I think I see this all the time in our community as well, on both sides. But I think more commonly, the ADHDer beginning to be like, "Wait, I'm resonating with a lot of this autism stuff. What is this about?"
I'm curious, so like, let's start with your ADHD story. Like, were you diagnosed in childhood? Was this a later-in-life discovery for you?
JAK LEVINE-PRITZKER: Yeah. And before I start, I really just want to say thank you to both of you. I know that, like, thank yous can be awkward. But I literally listen to your podcast like hours a day. I am so obsessed. And it's been such a source of comfort to me and something that I really go to when I'm feeling overwhelmed. I've learned so much. And yeah, I'm just really happy to be here with you two. So, thank you.
And yeah, onto my ADHD experience. So, I was diagnosed in law school. I don't even know how many years ago that was at this point. I'm so bad at time, maybe six or seven years ago, something in that vicinity. And I was really struggling. I was getting great grades. But I noticed it was so much harder for me than a lot of my peers. I was staying up a lot later, I was studying flashcards like a thousand times and still not remembering them. And yeah, I was dealing with a lot of anxiety, what I thought was depression, but was probably burnout.
And yeah, I went to the school counselor was like, "Yo, what is going on?" I'm like pulling out my hair. I'm getting a bald spot. Like, something's not working here.
And I'm really lucky that she picked up on ADHD, like, right away. And sent me to a psychiatrist. And I got diagnosed pretty quickly at that point with ADHD inattentive type.
MEGAN NEFF: That is such a cool story. Like, I mean, it's easy to talk about how often we go unseen. But I love that you didn't have that experience, that you went to someone and they saw that right away. And they saw it in a law student, which, again, there's all those stereotypes of like, "You can't be ADHD and like graduate from college, or…" Yeah.
I also hard relate to my first graduate degree. Just my voice today. It's [CROSSTALK 00:05:14]-
PATRICK CASALE: [INDISCERNIBLE 00:05:15] sometimes.
MEGAN NEFF: No, I've got, you know with long COVID, I've got voice stuff too. And I didn't warm up my voice. I haven't talked to anyone. You all are like the first people I'm talking to today.
So, tangent, yes, my first graduate degree, too, like, all I did was study. And it was always such a mystery of like, how is it that other people don't have to study 24/7 to, like, get through this thing?
JAK LEVINE-PRITZKER: Yeah.
MEGAN NEFF: Yeah. So, I definitely relate to that part.
Okay, so you've known about ADHD. It sounds like you did a life pivot because you're not a lawyer, you're an ADHD coach.
JAK LEVINE-PRITZKER: Yeah.
MEGAN NEFF: And so, this was a pretty big identity shift for you when this happened.
JAK LEVINE-PRITZKER: Yeah, I think that when I got diagnosed, you know, I was already… So, I went to law school because I was really into community organizing and activism. My dad's a judge. And so, you know, I really bought into the whole, like, in order to really make change a law degree will really help, it can't hurt.
And yeah, I already kind of was clear that I wasn't going, like, straight into the direction of law. And then, as time went on, I just started feeling like this was a really unsustainable path for me. I don't know if I had words for that at the time. But yeah, I was just not feeling good.
I got really kind of like an ADHD hyper-fixation about health and fitness at the time, became a health coach, and was, like, doing that on the side with all my free time, of course, at law school.
And then, when I got diagnosed with ADHD, I, as everyone does, or most people do, got like utterly obsessed, deep-dived, and started an Instagram kind of on a whim. And it just really took off. And then, I sort of pivoted my health coaching business into more ADHD coaching. Yeah.
MEGAN NEFF: Yep, yep.
JAK LEVINE-PRITZKER: Yeah. Tracks.
MEGAN NEFF: You followed your interest, you followed your interest.
JAK LEVINE-PRITZKER: Yeah, exactly.
MEGAN NEFF: I love it. I love it. Yeah. Yes, I sometimes call myself like an accidental Instagram, I don't know what to call it. I don't like the word influencer. And I don't like calling myself an Instagram therapist. Instagram human, like, because it was just like, "Oh, I want to like think about this. And I want I like making designs." And then, it just like, took off. And it was like, "Oh, I guess I should build a career out of this." So-
JAK LEVINE-PRITZKER: Yeah, exactly.
MEGAN NEFF: …a lot of [CROSSTALK 00:07:48].
PATRICK CASALE: Yeah.
MEGAN NEFF: Okay, so when was the moment where you were like, "Oh, maybe this isn't…" Or, like, "Maybe this experience I'm having isn't explained by ADHD, maybe it's autism?" Was it like content you came across? Was it talk? Like, what was that moment, if you have a specific moment?
JAK LEVINE-PRITZKER: I think there's a few moments. So, I would say for the past couple of years on Instagram, I had had people commenting on my post going, "Hey, you're actually talking about autism, not ADHD. And like, you need to figure that out."
And I think that kind of sparked interest at the time. So, this would happen multiple times. Someone would comment that I was like, "Oh, shit." Is swearing okay, I can't [CROSSTALK 00:08:38]-
MEGAN NEFF: Yeah, yeah, absolutely.
JAK LEVINE-PRITZKER: So, I'd be like, "Oh, shit. You know, what is this?" I would go down a super intense research hole, conclude that I'm not autistic after not, like, relating as much to the social and communication pieces. And then, sort of come back and be like, "No, like, this is ADHD/OCD/whatever. You know, stuff is going on for me."
And then, it happened enough times that I really had to, like, slow down and be like, "Okay, what is going on here?"
And I don't remember exactly what prompted me but I reached out to my friend, Adrian. I think their account is like @allforthedopamine or something. I can let you know, they're really cool if you want to connect. And I did a really informal assessment with them. And they couldn't diagnose or anything, we were in different states. So, it was more just informal. But they thought that it was possible that I was autistic, for sure. And so, that really, really then took me on a deep dive.
And yeah, I think that the pieces that I have most resonated with are sensory pieces. And then, more of the special interest. And more of like the criteria B kind of fits, yeah.
MEGAN NEFF: So, now I'm curious. I'm like okay, my curiosities are divergent. I am curious, like, what if you remember, like, the content where people were commenting on that because I think that does happen a lot where we overshadow our own experiences.
Like, I was doing that with ADHD. I kept thinking, like, my interest-based nervous system or some of my executive function stuff I thought was my autism. And then, I was like, "Oh, wait, no, that's the ADHD." So, I know that happens.
And then, I'm having kind of an opposite thought of the other thing that I see happen, especially, on social media a lot is people sometimes, I think, out of like, maybe because autism has been so overshadowed historically, sometimes people will, like, mistakenly start monopolizing traits, like sensory sensitivities. Like, I've had that on my posts where people are like, "Sensory sensitivities are not part of PTSD. They're not part of ADHD." And it's like, no, actually, we don't want to monopolize sensory sensitivities.
So, I also see, like, where people will kind of overuse that, where they'll be like, "Oh, well, you're talking about autism." Well, it's like, no, there's actually a lot of explanations for why a person might experience that. So, I'm having both of those thoughts happening right now.
Do you remember what you were sharing that people were like, "Oh, that's autism?"
JAK LEVINE-PRITZKER: I don't exactly. But I do totally agree with you. And I see both of those things happening as well. And I do think that a lot of this was probably around sensory stuff because I talk about that a lot because that's a huge part of my experience.
Yeah, I can't remember. It'd be really interesting to go back. But yeah, there were some people who it was like, really, really well-intentioned, and kind. And then, I was also getting a lot of people telling me I'm ableist. And that, you know, I don't want to identify with autism because of the stigma.
And that's real. And I think that, you know, deserved the conversation. And I know that happens, but this was after I had spent like, you know, weeks and months of my life trying to figure out if I'm autistic or not. So, they're just [CROSSTALK 00:12:24] yeah.
MEGAN NEFF: First, I'm just sorry that happens. And I've gotten comments like that, too. And that's just, I think, especially, like Patrick and I have talked about this with RSD. Like, those comments, like, I don't know about you, but I still have intrusive loops. Like, I can tell you every negative comment I've ever gotten because they intrusively come to me, even if they were years ago.
And I think what people miss, like, sure that happens, where people are like, "I don't want to identify because of ableism." What I see what happen more, people are like, "I don't want to own an identity and take up space in a community that I'm not sure I belong in." And so, I see that be the motivator way more often. But then, they're accused of being ableist for not wanting… Like, so I just feel a lot of sadness around this conversation.
PATRICK CASALE: There's a lot of sadness in that. There's almost like this impostor syndrome-esque feeling that I keep hearing from colleagues and friends who think that they are autistic, right? They're waiting to get testing done. They've done some self-assessments, maybe they've done something that, like Jak, like you're saying, you did some deep diving, and be like, "I think this is me. I don't want to own it yet because…" Like, you said, Megan, "…I don't want to take up this space in this community if that's not in fact the case."
And then, there's almost this like impostor syndrome-esque experience where there's so much self-doubt, there's so much, like, anxiety and dread about what are the testing results actually going to yield? Because if the result is not autism, I do not have an explanation for why the hell my life is the way that it is and why my experience is the way that it is.
And I think that is so complicated and so emotionally taxing to be in that, like, liminal space, so to speak.
JAK LEVINE-PRITZKER: Yeah, that in-between spaces are really brutal, especially, if someone is autistic or ADHD, and has like a sticky brain. It's really rough.
MEGAN NEFF: Yeah. I love that, what you said, the in-between stage because, especially, like you're in the in-between stage and you're public. And so, like, that has to be so tricky of like, how do I talk about this in a way that, like, oh, gosh, how long have you been in-between space? And yeah, that sounds really tricky.
JAK LEVINE-PRITZKER: Yeah. Thanks, I would say maybe the first time I made a reel maybe a year ago or so. That's like a total guess, something, yeah, I think about a year. And I wrote it out.
And I, basically, was saying, you know, I get a lot of questions about if I'm autistic. And like the answer is I really don't know. At that time, I said, "I don't think I am." I've really deep-dived on it. And there's certain pieces that resonate. But overall, it doesn't fully feel like it clicks. Though, you know, I'm kind of that classic, like, highly sensitive ADHD, sensory sensitivities, OCD. Like, I'm kind of in that realm of things that like, is a little sass, you know?
And so, I made that post a while ago. I got a lot of really helpful comments and feedback. And kind of took a break, I guess. And then, I've been really more openly about it for the past, I would say, maybe, four months. I've been really just honest, saying, I'm getting an assessment done, getting an assessment done in six days from today, which is really exciting. And I've been really honest, at this point, just saying, I'm honestly not sure, which is really weird because I was so certain.
And for OCD, which I'm diagnosed with, and ADHD, which I'm diagnosed with, I went into those being like, "You can't tell me otherwise. Like, I'm so positive this is my experience."
And, yeah, with autism, I really feel like I need a professional to help me tease it apart. I'm really unsure. And so, that's kind of where I'm at publicly, which feels good because it's honest, but it's also vulnerable. And like, yeah, it's weird being in that in-between mode, for sure.
MEGAN NEFF: That is really vulnerable. And I mean, your business name is Authentically ADHD, right?
JAK LEVINE-PRITZKER: Yeah.
MEGAN NEFF: So, like, I love how you're showing up authentically because I think there's a lot of anxiety around the process of like, I'm going to go and someone's going to tell me, especially, now that these things have become more of like an identity. Like, I'm going to be told if I belong in this community or not. Like, the stakes can feel really high.
So, I have a few curiosities. One, like, will you be disappointed if it comes back and they're like, "No, you're actually not autistic. ADHD and OCD explains this." Like, do you feel attached to the identity? Are you hoping for a certain outcome?
PATRICK CASALE: It's a great question.
JAK LEVINE-PRITZKER: It's a great question. Yeah, overall, I think, I feel mostly neutral. I think that what I most want is clarity. And to be able to understand my experiences. And to be able to, I think, a lot of what is driving me getting an assessment is my publicness. Like, I want to be able to accurately represent what I'm talking about and have clarity about that.
I think the more I've gone in to it, and like deep dived into it, I think there's several things that if I don't get an autism diagnosis, I'm going to be like, "Okay, that's fine. But like, what is happening here then?" Like, is the sensory processing "disorder?" Like, what is going on?
So, I think, yeah, what I'm most looking for is clarity. And yeah, I feel kind of open with the exception of like, then I need answers about some of these couple of things that are going on, yeah.
And I feel like 50/50. I'm like, I could be really convinced either way, I feel at this point, yeah.
MEGAN NEFF: I feel like that's such a helpful frame of mind to be going into an assessment with of like, I want to understand myself. And so, I want to go to someone who's going to help me understand that.
I also think that's rare, especially, around the autism diagnosis because of the history, and because of the gatekeeping. And because of X, Y, Z.
JAK LEVINE-PRITZKER: Yeah.
MEGAN NEFF: But I feel like that is a really fantastic way to walk into an assessment of like, "I want to understand what is happening."
JAK LEVINE-PRITZKER: Yeah, thanks. And I think, yeah, again, that comes from being genuinely unsure. And having, you know, dived down into the rabbit holes. Yeah, there's a lot of things that lead me to believe I'm not autistic. There's a lot that will lead me to believe that I am.
And I definitely don't fit a profile that I have seen at all represented. And, I mean, I have really searched, you know, high masking, AFAB folks, you know? Like, I really, really searched and I still don't see myself fully in any of the experiences.
MEGAN NEFF: Like, yeah, so that is interesting. Like, it does sound like you don't see yourself in criteria A which is, like, core to the autistic experience of like, moving through social space, like doing it analytically? It comes more, like, intuitively to you. [CROSSTALK 00:20:10]-
JAK LEVINE-PRITZKER: Yeah, no question mark. So, I don't know. I think that that is what I originally felt. Yeah, I've been someone who most people would identify as like, very socially. I don't know what word I'm going for here, able, for lack of a better word, I guess.
And I, at first, really didn't resonate with a lot of criteria A. The more that I have learned about it, there are definitely pieces that I resonate with a lot more than I previously realized. And the more that I consciously observed myself, the more that I'm seeing these things.
And I really struggle with these questionnaires. Like, I don't score that high on the CAT-Q. I don't score super high on a lot of questionnaires. But when I had someone prompting me with really specific examples, they were like, "[INDISCERNIBLE 00:21:22]. Like, why did you answer no to that question and you just gave me seven examples?" So, I-
PATRICK CASALE: I can relate to that really, really hard.
JAK LEVINE-PRITZKER: Yeah.
PATRICK CASALE: Because I was diagnosed ADHD first about six, seven years ago. And that really made sense. And all of the questions when it came to autism and doing any of the assessments and testing, the yes or no, like, I would go into my head about like, "Well, yes, sometimes, but no, sometimes. And then, like, what about in these instances?" But I'm like, "But the answer is just yes or no, so I just have to pick one."
And then, if you have examples, and someone who's really well versed in neuro-affirming care, it's like, "Oh, yeah, there's a hundred examples as to why that's a yes."
MEGAN NEFF: Yeah.
JAK LEVINE-PRITZKER: Yeah, I think [CROSSTALK 00:22:10]-
MEGAN NEFF: I feel like the autistics' response to, like, those questions is like, "It depends."
PATRICK CASALE: Right.
MEGAN NEFF: "It depends on the context."
PATRICK CASALE: Yeah, exactly. Like…, asterisk. Like, in what scenario are you asking this question? It's not all-encompassing.
JAK LEVINE-PRITZKER: It's so bad.
MEGAN NEFF: It's like, oh, my gosh, like, would you rather go to like a party or museum? First of all, like, neither? Second of all, like, what kind of museum? What kind of party? Like, what time of day? Like, there's not enough context.
JAK LEVINE-PRITZKER: It's so horrible. Yeah, I was wondering, as I was taking the assessment, sort of feeling like my approach to the assessments field's, potentially, autistic. Like I was leaving, like a thousand comments for my assessor, being like, "I can't answer this question. Like, if it were this, then it would be this. If it were this, then it would be this." So, yeah, we'll see, I guess. But, yeah, yeah, the questions are brutal. And I guess, like-
PATRICK CASALE: The whole process is [CROSSTALK 00:23:17]-
JAK LEVINE-PRITZKER: Say that again, Patrick. Sorry I-
PATRICK CASALE: The whole processes is so challenging. Like, it's designed nine times out of 10 to be like such a sterile environment where you know you're going there purposefully for a reason, but it feels like meta in a way. I'm like outside the outside the window watching myself do this stuff. And unless you've got a really good testing psychologist, like someone who does the deep dive on like Megan's talked about her process, like really going into special interest deep dives, and things like that, instead of just reading off question after question, it's so complicated.
JAK LEVINE-PRITZKER: Yeah.
MEGAN NEFF: Well, that's part of what's tricky is like, it's supposed to be sterile because you… So, with assessments it needs to be standardized. And that's part of what makes it standardized.
But then, you look for the process, right? So, like, there's some assessments, a lot of them where you're literally as the assessor not… there's like a script. Like, try your best. Like, that's all like on cognitive, is if there's questions people have on cognitive tests, it's like, I can either repeat the question or it'd be like, try your best.
But part of the assessment is that, like, it's not just how people are answering these, you're watching how they're answering these, right? So, like, I'm paying attention if someone's struggling with like, do you like museums or, you know, parties? It's like, what is their process around the struggle.
So, there's a lot that goes into it because you're also observing, but that is part of what makes I think assessments feel really, like, they're supposed to feel cold, which that always to me as an assessor never felt natural. But, I mean, they're not necessarily supposed to feel cold. But there is supposed to be kind of a detachment in the sense of it is supposed to be, like, a sterile you know, like, standardized process.
PATRICK CASALE: Why do you name that? I think as the only person in this room right now who does assess or who has done, and taught assessments as yourself, sitting on the other side of it, when you don't have that context can feel really murky. I would almost, like, evaluate every question I responded to because I was constantly evaluating the environment. And how I was sitting in it, how I was being asked the question, how I thought they were reacting, the specific responses. Like, it was a strange experience for me and I did not enjoy it.
MEGAN NEFF: Yeah, it's supposed to be strange, or like, it's not supposed to be strange, but I don't, like, really know a way. I mean, there are people who do like collaborative assessments and do it from a different frame, but like, kind of traditional assessments. There's no really way around it where it's not a strange experience.
PATRICK CASALE: Yeah.
JAK LEVINE-PRITZKER: Yeah, I really appreciate you actually, it feels calming to me to hear that a lot of the process is being studied, rather than just the content. I mean, that feels like very weird in a lot of ways. But because the content feels so hard for me to answer I have such a fear that I'm going to, like, swing it in one way or the other based on what I say.
And it actually feels reassuring to know like, yeah, the assessors also just looking at how you're going about this not just the information that you're providing kind of takes off some pressure, I feel. So, thank you.
MEGAN NEFF: Yeah, no, I think it does for a lot of people. And it does have a range for, like, how the assessor works. But I think about it as like quantitative and qualitative. So, like, in research, we've got quantitative, which is like data, numbers. And then, qualitative, which is the story, the narrative.
And then, a good assessment it's both. There's quantitative and qualitative. So, like, yeah, there's the scores on the assessments, but then, there's the observation of like, and that's the qualitative.
And so, a good assessment is a marriage of the quantitative and qualitative so that if someone has 10 pages of notes around, like, you know, "Well, I can't answer this question because I don't have enough context." Like that's really rich, qualitative information for the assessor.
JAK LEVINE-PRITZKER: Yeah, that's really helpful. I know that I'm sort of the questionee here, but can I ask you a question?
MEGAN NEFF: Yeah, absolutely. I love that.
JAK LEVINE-PRITZKER: Cool. So, yeah, I guess, first of all, before I do that, I just want to name that my assessor is someone that specializes in working with high-masking women for the most part, so that feels really good for me. I've also seen her share some of your graphics, and I'm like, "Yes. Okay, cool." So, we're in the same world, we're on the same page. I feel it's really good.
Okay, so my question is, yeah, I'm curious if you have seen folks who like, definitely, check criteria B boxes, and like, definitely have some criteria A. I don't feel like I experience criteria A to a level that feels disabling for me. But I do feel like I have a lot of criteria A differences that are present, especially, when I really look more.
So, things like really just wanting to talk about my interests, getting really, like, disappointed if I'm in a conversation and it's like not around my interest. Definitely stuff in the realm of, like, humor just no, does not do it for me. I never find things funny. I find weird things funny that other people don't find funny.
And I also have a feel, like an experience of being kind of, like, on socially is the best way that I can explain it. Like, I feel very aware of myself, I feel very on. I'll often leave conversations being like, "Did I balance that conversation well? Does that person like me? Like, how did that go?"
So, there's like stuff there for sure and I could continue going. But not scripting, not like a lot of those more classic things that I hear. I know you can't, like, fully answer this without knowing, like, my full clinical picture, but like, have you seen that thing at all? That combo?
MEGAN NEFF: Hey, I have and it's tricky. Like, I'm sitting here I'm like, "I want to know what your assessment comes back with." Like, to me, those have been the most tricky assessments where it's like, okay, I see criteria B. Because criteria A, it has to be there. Like, it's-
JAK LEVINE-PRITZKER: Yeah, of course.
MEGAN NEFF: …and with that, of like, considering masking. So, yeah, I have seen that. And those are like the most complex cases to sit with.
And this is where, so I totally 1,000% understand why it's so offensive to be like, everyone's a little autistic, everyone's a little ADHD. Like, not cool. But at the same time, I think sometimes then we miss like, well, there are, like some people can have more autistic traits than other people. And the ADHDers are more likely to have autistic traits than a neurotypical. Autistic people are more likely to have ADHD traits than neurotypical.
And I don't think there's enough conversation around like, allowing for the possibility of, yeah, someone could be ADHD, OCD, and have, like, a bunch of autistic traits, but like, the below threshold is this weird kind of magical thing? So, first, I just feel like that's not talked about enough.
JAK LEVINE-PRITZKER: Yeah, I agree.
MEGAN NEFF: Second, with the criteria A that does get tricky because it's also, like, there could be ADHD reasons where small talk is hard for an ADHDer. So, also, it's about drilling down to like, the experience. Like, it always goes back to that subjective experience around like, what is it about small talk? What is it about all of these pieces? And again, that can be tricky to tease out.
But, I mean, this is where it's really good. You're working with someone who knows masking because I do think a lot of us, when we have masked these things, like our whole lives, these things become so automatic that we're not aware until we're aware. But yeah, I have seen it and these are assessments that are complicated. So, I get why-
JAK LEVINE-PRITZKER: Yeah, thanks for naming that.
MEGAN NEFF: …you've been like, "I don't know. People keep telling me I'm autistic. And then, I look and I don't think I am. But, like, maybe." Like, I get why you're confused.
JAK LEVINE-PRITZKER: Yeah, yeah. And then, I feel like what's happening too is, I'm becoming so aware of myself socially, that I'm in this phase right now where eye contact, for example, is feeling, I'm like so much more aware of eye contact, feeling more uncomfortable. But I'm like, is that because it's always felt uncomfortable and I've never noticed? Or is that because I'm, like, hyper-aware of observing my eye contact right now?
So, yeah, it's tough. I appreciate just like the acknowledgement that it's complicated because it does feel that way. And especially, on social media. I feel like there's not space for that to be allowed.
MEGAN NEFF: Yeah, there's a lot of like, and I mean, just in our world, in general, right now, there's so much, like, all or nothing thinking that these things are truly way more complex than that conversation allows for.
JAK LEVINE-PRITZKER: Mm-hmm (affirmative).
PATRICK CASALE: And that's why like, I appreciate, I was going to mention, you know, Megan's Misdiagnosis Monday graphics, and everything that compares, and those Venn diagrams is so helpful.
And then, like books that Dr. Donna Henderson wrote, like, Is This Autism? Things like that are so helpful to set some of this apart when things feel like there's so much overlap.
JAK LEVINE-PRITZKER: Yeah.
PATRICK CASALE: And, you know a lot of my content speaks to the autistic ADHD experience and the like, push/pull and the, like, tug of war existence that it feels like a lot of the time. And I'll get comments constantly of like, "I'm ADHD, but all of these things sound like me." Or, "On and off all of these things sound like me. Am I also autistic? Am I also ADHD?"
I can't say that on an Instagram post. I have no idea. Maybe, I have no fricking idea. Like, you should probably look more into that stuff and deep dive the stuff that's out there. But it is really complicated.
JAK LEVINE-PRITZKER: Yeah, it is. I love those posts that you make, by the way. And I so resonate with them. I definitely tend to resonate with ADHD content a lot, for sure. And that kind of like tug-of-war experience. But yeah, I get the confusion. And yeah, it's so hard to know, it's hard to know.
PATRICK CASALE: It's so hard to know, especially, for several of us who have social media followings. Like, you're going to get comments from anyone and everyone. And it's really hard to just answer in a generic sense of like, I don't want to give you this advice because I don't know. Like, I don't have a clear picture or understanding of anything about you. And I'll get a DM of like six pages of info, and then, I'm like, "Oh, now I have a good understanding."
MEGAN NEFF: This is where you can take a pro tip for me and just turn comments off.
JAK LEVINE-PRITZKER: Seriously, yeah, I love your boundaries on social media. It's so good.
MEGAN NEFF: I go back and forth. Like, always, I'd be like, "Maybe I should turn it back on." But then whenever I do, I'm like, "Yep, this is why I keep them off."
JAK LEVINE-PRITZKER: Yeah, no, thank you, yeah.
PATRICK CASALE: Well, I'm just thinking about, like, the process of sitting in the space with it. And it sounds like, you know, like Megan mentioned, just being super curious and intentional about it is a really wonderful way to go into a process where you're not entirely sure what the outcome is going to be. So, I commend you for sharing that. And also, just sitting with it as comfortably as you can because it can be really hard to hold that and just like the waiting game, and just trying to figure out.
And that was, for me, the driving force behind an autism assessment was the, I want to understand myself. Like, I really want to figure a lot of this out because I don't feel like I have all the answers.
And I think when we're seeking that clarity, that can be a really challenging mental place to be in a lot of settings, too.
JAK LEVINE-PRITZKER: Yeah, did you go into your assessment clear or you're saying you were kind of in that unsure place as well.
PATRICK CASALE: I was definitely unsure. I had friends of mine whose told me to pursue it. And they were pretty confident in what the outcome was going to be. I think I was in a place of much more internalized ableism at the time where I was like not autistic because of example A, B, C, D, E, F, G. When I got my results back, and I've said this many times on here, but like, I told my wife first and she was like, "Yeah, no shit.' And I was like, "Oh." Yeah. Well, that's not exactly what I was looking for but [INDISCERNIBLE 00:36:36]. So…
JAK LEVINE-PRITZKER: Yeah.
MEGAN NEFF: That would be an interesting conversation, like the different spaces we're in when we go into an autism assessment because I would say the majority of people, like, that I know, go into an assessment already self-identified. And so, the stakes feel really high.
PATRICK CASALE: True.
MEGAN NEFF: And I just think that changes the nature of an assessment so much. I mean, that's where I, like, by when I got diagnosed, like I had already self-identified, I was already creating content. And that really does change the experience, which is that'd be interesting. Like, I feel like that part of the assessment process isn't talked about enough.
And I hear it talked about from assessors of like, that's a hard way to go in as an assessor when someone is already really attached to an identity because part of an assessment, like, you need to go in with a lot of openness and curiosity. Maybe it's this, maybe it's this, maybe it's that. And I think that has changed. Like, that's part of the flavor of autism assessments. And at least in the States right now, in adults.
I'm just kind of riffing at this point, but…
PATRICK CASALE: No, that's a great point because I think that can almost impact the way you respond to certain responses and answers too, right? If I'm so attached to this identity that I have self-identified with, and this question feels like it's one of those on-the-fence questions, am I going to lean more right or left? Because like, I'm so invested in the outcome.
MEGAN NEFF: And then, is it going to look like I'm malingering?
PATRICK CASALE: Right, yes, exactly.
MEGAN NEFF: I'm so invested in the outcome. And because I've heard all the scary stories about how often autistic people are invalidated, yeah, yeah. I mean, like, I was talking about how important a sterile environment is like, adult autism assessments, given the state of affairs is not a sterile environment because like, we're coming in with, those of us who are already attached to identity are coming in with fears of being invalidated.
And then, assessors might be coming in, depending where they're at, they might be coming in with like, "Oh, it's another TikTok assessment. Or they might be coming from a neurodiversity-affirming framework, which would be very different. But like, yeah, it's not a sterile assessment environment given the conversation around adult autism right now and how polarized the views are.
PATRICK CASALE: It's a great point.
JAK LEVINE-PRITZKER: Yeah. Yeah, it's interesting. I feel like and I'm very open to this being internalized ableism. I'm not really sure what's going on here for me, but it might be like OCD. I don't really know.
I feel like whenever there's a question that I could lean one way or the other, I'll answer it away from being autistic. And I really don't think it's because I don't want to be autistic. I mean, I have so many autistic friends. I love autistic culture. I love autistic people. Like, I really don't think that's what's going on here.
I think it's like I have this fear for some reason that I want to go into this assessment and because I'm there, she's going to think, "Okay, this person wants an autism diagnosis and I feel like I'm going to somehow like, manipulate the assessment to, like, say I'm autistic if I'm not." Which is just like a point of I just want, like, accuracy. That's really what's going on there, yeah.
MEGAN NEFF: So, like, in my first six months discovery, I think I retook, like, the screeners, like the CAT-Q, the AQ, the RAD. Like, so many times in this time I was like, "Okay, I'm going to answer so conservatively." Like, and I seriously probably took all of them like 10 or 20 times. And being with like, "Okay, well I could say yes but I could say no, so I'm going to say no this time."
So, I did the exact same thing. And it was it was the, like, again that fear of like, I don't want to take up space and falsely claim this if I'm not right about this. And that was such a big fear. Like, I don't have that anymore because I'm three years old and my autism like, it feels more evident now than it did three years ago.
But in that first year, that was, like, such a really big caution of me around wanting to be accurate and not wanting to claim something that wasn't mine.
JAK LEVINE-PRITZKER: Yeah, it's nice to hear I'm not alone in that. I have also taken the test like so many times, which actually leads me to like, a kind of side note, topic question, can I drop that in quick?
MEGAN NEFF: Yeah.
JAK LEVINE-PRITZKER: Okay. The assessment that I score, like, wildly high on, like higher than even a lot of my ADHD friends is the monotropism or tropism, I don't know how you pronounce it, questionnaire. And I don't know, I'm curious if you have thoughts on that. I've heard sort of like, from what I've researched it obviously started as a theory of autism. But I know a lot of ADHDers can have higher monotropism. But it seems like the research is that like ADHD tends to be hardest, what do you see with montropism and across these neurotypes?
MEGAN NEFF: So, mono tropism is like, still relatively new to me as like, I think, I've come across this concept in the last year or so. And I think I've seen the screener that's floating around that you might be talking about. And I did notice on there that they're saying like, "Okay, this is it. This is a common trait in autistic people. But this isn't diagnostic of autism."
And I think this is part of, like, the shift we're living in is most of the, like, standardized screeners that we have out there and assessments are built on the DSM. They are built on this deficit framework.
Now that we have more autistic researchers and clinicians out there, we're getting to the question beneath the so-called symptoms of like, well, why do we do that? And so, now we're seeing more, like, screeners for like monotropism of like… because this is an organizing principle that explains the autistic brain.
I really hope in the next 10 years we see more of those sorts of like, screeners and tools enter the assessment process. So, that doesn't fully answer your question, but it's more this issue of like, we're starting to understand, like, I just read a really interesting article that just came out about flow state, and how it was recontextualized in autism, so again, "symptoms" as like these are behaviors of like when a person is trying to get back into flow or when they're not in flow state. And basically, autism is a desire to always be in flow state. It wasn't quite said like that.
But there's still a lot we don't yet know about like, these universalizing theories of autism or of ADHD of like, okay, is this truly distinct just to autism? But I mean, monotropism is a like very autistic experience. Yeah. But yeah, so I don't know that I fully answered your question. But, yeah.
JAK LEVINE-PRITZKER: I think it's great. I love that you're just acknowledging that there's a lot that we still don't know. And I think that's something that's also really left out of the dialogue a lot, though. Like, yeah, there's just still so much unknown. And we're in a lot of ways kind of like taking our best guesses. And some of those are more educated than others. And yeah, we're really new to figuring it all out.
MEGAN NEFF: Or new, and then, like, the clinical side of things, right? So, for those who are going the medical route, like, they have a lot of catching up to do. And, I mean, I feel like that happens in kind of all scientific fields of like you learn a thing, and then it takes 20 years for it to trickle down. Hopefully, it won't take 20 years. But so, there's also that just science moves slow.
JAK LEVINE-PRITZKER: Yeah.
PATRICK CASALE: Are we at that time? Reading the energy. This was a cool conversation. I'm actually happy we've wrapped up the two series back-to-back like this. I think a lot of people are in this space that you're in Jak, just that questioning phase, and really wanting to figure out the answer, and the solution, and some clarity, too. And I hope you will keep us informed on how it goes and if you're willing to. And [CROSSTALK 00:45:54]-
JAK LEVINE-PRITZKER: Yeah, absolutely.
PATRICK CASALE: …in that for you.
JAK LEVINE-PRITZKER: Yeah, sorry, my cats meowing in the background. I don't know if you could hear it. But it definitely distracted me. So, I apologize. But yes, I will absolutely keep you in the loop about it. I think it'll be really interesting to see what we find out. I should know in a few weeks.
MEGAN NEFF: Oh, wow. That's a fast process.
JAK LEVINE-PRITZKER: Yeah.
MEGAN NEFF: I will be so curious. Yeah, yeah.
JAK LEVINE-PRITZKER: Yeah, thanks for having me. Again, it's just really cool to get to talk to you both and hear both of your experiences more. And yeah, I'll be a little test subject for some of your questions, yeah.
PATRICK CASALE: Sounds good.
MEGAN NEFF: Yeah, yeah, I really appreciate your vulnerability just because I think there are so many people who live in this liminal space, this in-between time. And it can be a really anxiety-inducing time. So, I really appreciate you sharing what this process has been like for you both as a human, but also, like to be doing this process publicly.
PATRICK CASALE: Absolutely.
JAK LEVINE-PRITZKER: Yeah, I appreciate that. Thank you.
PATRICK CASALE: Jak, will you tell the audience where they can find more of what you're doing? And how to contact you if they want to work with you?
JAK LEVINE-PRITZKER: Sure. Yeah. So, I hang out, I would say, mostly on Instagram. So, that's @authenticallyadhd. And then, I have a website,www.authenticallyadhd.com/. You can read about the different stuff I'm doing or send me an email through there. And yeah, I've got a bunch of different membership, and coaching, and stuff like that.
And yeah, if anyone is also in this process that's listening and wants to share their experience with me, I'd be super down to chat.
PATRICK CASALE: Cool, I love that. And we'll have that in the show notes for all of you so that you have easy access to all Jak's information, in case you want to look up what they're doing.
And really, thank you so much for coming on and sharing this journey for yourself. This is a really cool experience to kind of talk about publicly.
JAK LEVINE-PRITZKER: Yeah, thank you for having me.
PATRICK CASALE: And to everyone listening to Divergent Conversations, new episodes are out on Fridays on all major podcast platforms and YouTube. Like, download, subscribe, and share. Goodbye.
