Episode 43: The Relief and Grief of Later-in-Life Diagnosis [featuring Jamie Roberts]
Feb 29, 2024
Show Notes
A later-in-life diagnosis of a neurodivergent condition can be a catalyst for great relief after years of searching for answers and feeling a bit different as well as invoke grief over the shift in identity, the years of not knowing, a new understanding of limitations, and changes that this understanding might bring.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Jamie Roberts, the founder of Equilibrium Counseling Services, about the complex and deeply personal aspects of neurodiversity, identity, and self-discovery.
Top 3 reasons to listen to the entire episode:
- Discover the nuances of neurodivergent identities, including the double-edged sword of attaching to a diagnosis, and how the need for constant curiosity shapes personal and therapeutic growth.
- Unveil the emotional layers of neurodivergent discovery and the balance of relief and grief that come with diagnoses later in life.
- Explore the authentic paths of unmasking and setting boundaries after life-altering events, highlighting the transformative power of embracing one's true neurodivergent self in both personal and interpersonal dynamics.
The discovery of being neurodivergent can lead to a mix of emotions and more questions on top of the answers, but by further exploring your neurodivergent identity, you can find normalizing relief, a sense of community, and start to find your authentic self beyond the mask.
More about Jamie:
Jamie Roberts is a Licensed Marriage and Family Therapist, and the founder of Equilibrium Counseling Services, a teen and young adult mental health center in Southern California. ECS, is a place where all identities and brains are celebrated, with the goal of building confidence in identity, and reducing symptoms of depression and anxiety. Jamie is the Neurodivergent Therapist throughout social media and is an active speaker on Neurodivergent and Teen topics. Jamie is also AuDHD (Autistic & ADHD) herself, and actively shares her experiences with her later-in-life diagnosis. She is the author of the book Mindfulness for Teen Anxiety, a practical guide to manage stress, ease worry, and find calm.
- Jamie’s Website: equilibriumcs.com
- 20% off my course Becoming a Neurodivergent Affirming Therapist (code: DC20): Neurodivergenttherapist.mykajabi.com
- Jamie’s book Mindfulness for Teen Anxiety: equilibriumcs.com/store/p/mindfulness-for-teen-anxiety-a-practical-guide-to-manage-stress-ease-worry-and-find-calm
- Instagram: @neurodivergenttherapist
Jamie’s masterclass with Neurodivergent Insights is also now available! Check it out here: learn.neurodivergentinsights.com/mindfulness-for-teen-anxiety
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Transcript
PATRICK CASALE: So, we have an awesome guest today here on the Divergent Conversations Podcast. Jamie Roberts is a friend and colleague, a licensed marriage and family therapist, the founder of Equilibrium Counseling Services, a teen and young adult mental health center in Southern California. She is @neurodivergenttherapist on social media, active speaker on neurodivergent and teen topics around ADHD. Herself actively shares her experience with later in life diagnosis and the author of the book of Mindfulness for Teen Anxiety.
So, Jamie, thanks for coming on. And we're going to talk about the relief and grief of later in life diagnosis today. And it's something that is definitely an important topic that Megan and I have talked about quite a bit in our own experiences and we're excited to hear about yours.
JAMIE ROBERTS: Yes, I'm excited to be here. A big fan of both of you, and your separate things, and your together podcast. So, I'm excited to be here.
PATRICK CASALE: So, later in life diagnosis is an important topic. I think we talk about it pretty often. Megan and I both talk about our own experiences. Why does this feel so important for you right now in your life and what you've got going on?
JAMIE ROBERTS: So, in my professional life, a big piece of it is I started doing ADHD and autism assessments in my private practice. So, I'm having a lot more conversations on a regular basis of people getting their official diagnosis for the first time. And holding that space of the relief, of the grief, of the, "I'm finally being seen." Or, "The pieces are coming together, and it makes sense." But also like, "Wow, I am 25, 30, 35, 40 and just learning about this." And being able to hold that space and give the resources. So, it's a recurring conversation I'm having on a weekly basis now.
And then I also have my own experience that is an ever-evolving journey of learning more and more about my ADHD, my autism, and what that looks like and feels like, and how that then shows up in my personal life and my professional life.
MEGAN NEFF: That is always such an interesting experience when it's both you're experiencing it and you're having a parallel experience to what you're walking people through. I find that a really interesting aspect of being a neurodivergent therapist. Like, yeah, yeah.
JAMIE ROBERTS: Yeah. And I think that's one of like, the cool things about being neurodivergent therapists, working with the neurodivergent population is it's, "Yes, me too. Yes, same I've had a similar experience, I can parallel that, I know, similarly, what you're feeling."
PATRICK CASALE: Yeah, absolutely. I think that creates so much more safety, and connection, and understanding for both the client and the therapist's ability to build that trust.
So, you know, I've known you for a couple of years now and I always knew, as you always have known that you were ADHD, you identified with ADHD quite a bit. Autism is pretty recent for you. And I'm wondering, like, what led you down that path of exploration? What was happening behind the scenes where you were like, "I think I want to know."
JAMIE ROBERTS: Well, the ADHD was, like, mind-blowing to me. And that's been about five years now. And so when I was 30, I figured that out. And that was a life-altering moment to be able to, like, put those pieces together. I say, like, the first time I took medication, I feel like my third eye opened, and like, suddenly, I had full access to my brain. And it was just this revolutionary experience.
And so I think, because that was just so cataclysmic that the autism was like another like, "Oh, yep, okay, that makes sense too" experience. It wasn't as grand. And I feel like the ADHD was like a defining moment and a switch in the work that I was doing. I was already working with neurodivergent clients. And I was just like, really good. And I got these clients. I'm such a good therapist, and then had the understanding about like, "Well, okay, that makes sense, because that's how my brain works also."
And I think, once I started going down the ADHD rabbit hole, and learning about ADHD, and then learning about all the parallels with autism, and then the overlap, and then the overlap of diagnosis for that being comorbidities, I started exploring more of the things within autism, and more and more aligned, and I was like, "Oh, it's just a parallel." And then there's that flip about, "But is it a parallel or is it its own distinct thing?"
And then I got into the TikTok world of neurodivergence, and started seeing more and more videos, and hearing more and more stories that were atypical, and not just the white male cis stereotype that we hear about, but we're seeing women talking about it, was hearing people with ADHD and autism talking about the different presentation, was hearing people of color talk about their experience, and there was more and more I was relating to, as opposed to what I had learned about what autism was from the beginning. And as I saw that presentation, it clicked into place.
And there was another professional that was going through the same experience in my office. So, we kind of were reflecting back and forth to each other about like, "There it is for you, there it is for you." And it just kind of really solidified in this last year about like, "Okay, yeah, this feels right for me."
MEGAN NEFF: It's so interesting to me, because I have like the parallel experience, but from the other side, like where the autism came first, and then I was discounting a lot of the ADHD as like, "Oh, no, I think that's my autism." And then realizing it was the ADHD and being like, "Oh my gosh."
But also the reverse of like, the autism was my big aha moment. And then when ADHD, I was like, "Oh, that definitely explains my house." And Patrick and I have talked about that, like, the autism felt like the bigger identity piece. So, it's so interesting to hear for you that ADHD was the big identity moment.
JAMIE ROBERTS: Well, I really appreciate it in the conversations you and I have had Megan that you kind of point out that I'm ADHD dominant. And I think like, that's probably part of it. Like, I know, I'm an extrovert and I've always known that of myself. And now I'm aligning that with some of the ADHD. And I feel like that's balanced out some of the autism for me. Like, the extrovertism that I'm like, "Is that extrovert or is that ADHD?" And holding those two together, but having that… what's more dominant? The autism or the ADHD, and how that changes our presentation in our own experience.
MEGAN NEFF: It has been so interesting, because we yeah, we have interacted professionally some, and so I find myself jealous of your ADHD dominance. So, for context for listeners, Jamie's doing a masterclass with me next week.
And when I do masterclasses, I pre-record them, I edit the shit out of them. I, like, need to know exactly what to expect. Live presentations is very anxiety-inducing for me. And I was like, "Jamie, do you want it pre-recorded or do you want a live audience for the masterclass?" And it was just, like, a, "Hell yeah, I want an audience. Like, how would I have…" My take, tell me if I'm wrong. My take was like, "How would I have energy to present without an audience?"
JAMIE ROBERTS: Right. It's the dopamine hit that I'm getting that constant feedback when I see the little hands come up or a question come up. I'm like, "Okay, I'm on the right track. This is what they want to hear. I can do this now." It keeps that dopamine flowing for me to stay engaged. Otherwise, without that immediate feedback, I feel like my brain starts to wander. And then I'm like, "Wait, am I off track." And have to, like, force myself back to like staying on track with a presentation.
MEGAN NEFF: That's so interesting. So, I've always thought about it energetically. But you're saying like the focus, it actually helps you focus on that feedback loop. Whereas for me, I get really flustered when I'm presenting and then there's, like, things going on in the chat. And that makes me lose my train of thought. And it makes me flustered. But, partly, because I've often had a pre-scripted idea of how it should go. But that is a really interesting… because I consider myself, yeah, autistic dominant. So, that's interesting to [CROSSTALK 00:07:45]-
JAMIE ROBERTS: I wonder, like, another part, I'm also dyslexic. And so I think writing scripts is hard for me, and reading something or being able to follow that sequential plan, part of that's ADHD, part of that, I think, is the dyslexia. And so if I have to follow a script, I'm going to mess up a script. And so if I don't have one, I'm not going to mess anything up.
MEGAN NEFF: Yes, yes, that makes so much sense, yes.
PATRICK CASALE: It's interesting to me to hear different presentations like this, because I'm thinking like, I would consider myself to be autism dominant, but in these situations my ADHD would definitely take over where I would want it to be the exact same way like the dopamine hit. I need all the different pieces happening simultaneously for me to focus. I feel very robotic in a lot of parts of my life. I like the structure, I like the orderliness in those moments when I'm presenting, when I'm talking, when I'm speaking live. I don't want that at all. That actually has the exact opposite effect where it makes me feel like I am really way too regimented, going through the motions, and it feels way too constricting for me.
JAMIE ROBERTS: Oh, interesting like to hear somebody else's perspective and then have it flipped, like your perception of how you go into it, too. I like that.
PATRICK CASALE: It's interesting, for sure. So, you know, I think for me, you know, I'm glad you mentioned your own experience, Megan, about, you know, your aha moment. I think I knew I was ADHD years ago, maybe five or six years ago as well. It didn't really come as much of a surprise to me. I kind of was like, yeah, that makes sense right? Like, cishet white male, lots of energy, lots of creativity, distractibility, okay, sure, check the boxes. The autism piece for me was the piece that was the aha moment. And I think it was, as I've said many times on this podcast, a grief relief moment where it was like, intense grief of what life had been like up until 35. And what life was going to be like 35 on with the knowledge, and understanding, and then this relief of like, finally, things start to make sense, right? Like, I was searching for these answers for so long and finally, it felt like there was at least an ability to anchor into the why. And I always think the why for me is really important.
JAMIE ROBERTS: I love that you said that searching for the answer, because, I think, like, that's the relief piece of it, is I was in therapy for 10, 15 years. I was on, like, medication for other disorders or diagnosis, which were symptoms. And then as soon as like ADHD and autism came into play, it was like a lot of the questions went away, like so much was answered. And now it's like, okay, now I just have to interpret things through a new lens. But the why isn't so big, or so heavy, or so evasive. It's a lot more clear.
MEGAN NEFF: Yeah, I felt that so much as well, just the relief of having an accurate lens to understand myself. So similar to you, Jamie, I was in therapy, I've talked about this on this podcast before too, but like, in the process of coming to terms with, like, grieving the fact I would never understand myself, for me, I was actually exploring, like, is there a repressed trauma that I don't know about? Because a lot of my experiences lined up with trauma, which is, again, really common for neurodivergent people.
And I've met so many people who are like, "Yeah, I had therapists tell me it was trauma." Or like, "I was exploring the possibility of trauma." Just because I think our lives don't make sense to us, our experiences don't make sense. And that's so disorienting when we can sense that our experience is different than others, but we don't have that why.
JAMIE ROBERTS: Absolutely. I was in a networking group recently where self-diagnosis came up. And this wasn't a neurodivergent-centered group, and I haven't been in one of those in quite a while. So, it kind of threw me off. But self-diagnosis came up. And it was kind of being dismissed or eye rolled, and I brought up to the group, I was like, "What is the actual harm? If somebody feels connected to the community, seen by the community, their questions are being answered, what is the harm of someone self-diagnosing or identifying within it? Whether you are a professional who thinks it's fully accurate or not? If I feel seen, then it's entirely valid and super helpful."
MEGAN NEFF: So, can I push back a little bit, Jamie?
JAMIE ROBERTS: Sure.
MEGAN NEFF: Let's have a dialogical. So, it's interesting, I actually think I evolved my thinking about this based on a conversation Patrick and I had around misinformation, because I used to say the same thing and think the same thing. But then as I thought about it, I actually think it can potentially have harm if it's not autism and then it stops the person's curiosity.
So, let's say it is bipolar, let's say it is borderline personality. There are supports and treatments for that. And there's a lot of reasons someone might identify with autism, especially, with how it's so prevalent in social media right now.
So, I don't think it necessarily, right, like does it do harm to the autistic community? I mean, that's a different conversation, but to the person, I, actually, think it could if it's not accurate. I think a lot of people who are self identifying, it's really accurate. But I think in some cases, people are seeing little snippets, it's all that fits and getting really attached to it, because of the culture around it. And I think that actually could cause harm, which I've not said it that directly before and I'm feeling anxious even just saying that. And I realize that's kind of a controversial view in this world that we're in. But yeah, that's where my thinking's at right now. What do you think about that?
JAMIE ROBERTS: I think like, like, reframing, like what I said about like, not being so like binary, black and right about it's like harm or no harm. Like, of course, there's a window in there in which like, it can cause harm to someone and to some people in some way, and others like it won't.
And I think in about what you were saying about stopping the curiosity. If you're autistic, it's not going to stop the curiosity. Look at how many of us with the diagnosis of, like, fell further in to that research and the questions like, it's not the burning, "I don't understand myself, why? But what is autism? What does that look like? How does that show up in my life? And if it isn't fully that, if it is BPD, if it is bipolar, you're likely going to stay in treatment, like a lot of us have, even with our autism diagnosis, stayed in therapy, stayed working on the problem.
And I think, therapeutically, if you're self identifying and you're in therapy, the protocol in therapy, it doesn't change a whole lot. Like, we're going to use a neurodivergent affirming lens, which is going to work for pretty much most diagnoses, right? Like, whatever you identify as, I'm still going to come at you as your person first, like, experience of your lived experience, and how do we make your life more comfortable, whatever the label is?
MEGAN NEFF: Yes, so I think where I agree with you, if you're autistic and you self-identify, it's not going to harm you.
JAMIE ROBERTS: Yes, agreed.
MEGAN NEFF: Because your curiosity continuous.
JAMIE ROBERTS: Agreed.
PATRICK CASALE: This is a nuance too, because we're three mental health professionals, you're having this, like, really meta discussion about experience and a lot of people are not always going to have that reframe or perspective when they're thinking about their own diagnosis, or the same ability to kind of take that step back, and kind of examine it. So, it's really interesting to hear both of your perspectives right now.
I kind of fall in line with a little bit of both, because Megan, I remember when we were having this conversation on the podcast, we were talking about the potential harm of TikTok, and diagnosis, and like, you hear a 30-second viral video and you're like, "Yeah, that's me, absolutely." And how there can then become implications for just completely aligning with that sentiment or that statement based on like 30 seconds of dialogue, or research, or discussion.
So, it's really complicated. I think social media makes this even more fascinating now that we're moving into this realm where like, we have this access to this information at the touch of a button, at our fingertips whenever we want it.
MEGAN NEFF: Mm-hmm (affirmative). And I think there's some kind of splitting that's happening. And I think this has also evolved my thinking. Like, I used to be in those groups, exactly what you're talking about Jamie, where, like, I'd be with clinicians, and hear them talk, the way they talk about like TikTok referrals just makes my skin crawl. It's very dismissive.
But I've seen the conversations evolve to where, like, clinics who are closing their assessments, because they're getting lawsuits, for example, when someone's given a, well, they… No, I don't want to get into specifics, when someone's not giving [CROSSTALK 00:17:11]-
JAMIE ROBERTS: When they're giving a diagnosis different than what they came in [CROSSTALK 00:17:13]-
MEGAN NEFF: Yes. And so it's become so contentious that many people are closing. And folks who are saying this, or like, you're right, like, majority of people coming in are autistic, but that small percentage who are coming in, and we're not diagnosing that, we're diagnosing something else, it gets very activated. And again, I understand it because I understand the attachment to autistic culture. And I actually feel some guilt for how I've contributed to this narrative of like mental health therapists don't get us. So, I think a lot of us comment, defend it, understandably, but all therapists don't usually get us.
JAMIE ROBERTS: Yeah.
MEGAN NEFF: But it makes the assessment process, I think, really escalated. And then on the flipside, mental health therapists are looking at autistic culture, kind of rolling their eyes, especially, if they're having some of these experiences of lawsuits. So, I just think it's getting really, like, polarized and really complicated.
JAMIE ROBERTS: That I will absolutely agree with. I do think like, a lot of the conversation is, we have to really fight to be seen and fight to be heard. And so people are coming in ready for the fight. Like, I've had a lot of conversations with clients being like, "What do I need to prepare to go to the doctor or go to somebody so that they believe me?"
And so I definitely hear you on that, like, going in ready for the fight. And then if the clinician is in that space of the, not taking it serious with the eye roll about social media, that being just so on the opposite sides. I could absolutely see that being harmful.
MEGAN NEFF: Yeah, yeah. And a lot of times the clinicians aren't necessarily, but we're coming in prepared for that. And so we see the slides when they happen, right?
JAMIE ROBERTS: Absolutely.
MEGAN NEFF: But sorry, I feel like I've derailed our conversation [CROSSTALK 00:19:03]-
JAMIE ROBERTS: Oh, no Divergent Conversation went off track.
PATRICK CASALE: I think it's an important, you know, lens, though, and I think it's an important thing to just examine and to kind of pick apart, too. So, I'm glad you named that Megan. And I don't think it derails the conversation, I think it just diverges it into a different lane. I'm thinking-
MEGAN NEFF: [CROSSTALK 00:19:21]-
JAMIE ROBERTS: …diagnosis, and this is part of the diagnosis process, whether you're self-diagnosing, whether you go in and somebody says that that's not accurate, that is a part of the relief and grief. Like, what if you feel so connected to something and you go in, and a professional says no? Whether they're right/wrong, you're right/wrong, like, that is a grief experience too.
MEGAN NEFF: Absolutely. And that does also happen, right? So, I've just said, you know, that experience where someone's diagnosed with something, and maybe they're not autistic, and blah, blah, blah. But the other thing happens too, of course, where people go in and they are misdiagnosed.
JAMIE ROBERTS: Probably more often.
MEGAN NEFF: Probably, yeah, yeah. I would think so. And so the grief, absolutely. And then the, like, impostor syndrome, and like, I had people reach out of like, "I'm not sure if I can be part of your community anymore because someone just told me I'm not autistic." And I'm like, "Oh my gosh. No, like, be here." I think that is a really huge grief experience when you've attached to this, and then you're told, "No, you're not autistic."
JAMIE ROBERTS: Yeah.
PATRICK CASALE: Absolutely. I think there's a lot of grief in misdiagnosis, in general. Like, whether we're talking about autism, whether we're talking about ADHD, bipolar disorder, a lot of these diagnoses have so much weight behind them, and can feel so life-altering in the moment when they are delivered. And if we're talking about misdiagnosis, you know, I've talked about it on here before many times and I think all three of us have had these experiences, but like, I was misdiagnosed bipolar 2, because I had a gambling addiction before, because I had impulsivity in my life because of all these other contributing factors, get put on mood stabilization medication that doesn't work, that actually has the adverse effect. And then all of a sudden, it's created this, like, snowball effect of, like, problem areas that are now no longer being examined or attended to. That's painful in itself.
Also, I'm just thinking, and my brain is diverging, but I've had two medical situations lately with complete different scenarios where like one was unbelievably dismissive as if you're not autistic, right? And the other one was, like, very affirming and understanding. So, I have a speech therapist for my voice right now. And she kept saying, like, "You speak so low, you speak so flat." That, "You're going to have to learn to speak in a higher pitch because of the vocal issues that you're having."
And I was like, "Well, I'm autistic, I kind of default into this flat-like delivery." And she was like, "Oh, okay, well, we can work with that. We'll create all of these strategies." I was like, "Oh, okay, awesome."
Then I had a doctor who I was seeing for my back issues. And he was just like, "You're so despondent, you're never looking at me when I'm talking to you, when I'm delivering this information. Are you depressed? Are you suicidal? Are you sad?" And I'm like, "No, I'm just…" You know, I was like, "I'm autistic, I don't really enjoy making eye contact. It's not comfortable for me." And he's like, "That doesn't fit though, that doesn't make sense here. You've already told me about two businesses that you run in the 30 minutes that we've been in this appointment."
And I'm like, so this is like, every day, right? We are so often having to pick and choose when to disclose information. Is it safe to do so? Is it going to be dismissed? Is it going to be affirmed? And I think that creates this extra layer of grief where you have to move through the world wanting to feel accepted, but never truly knowing if that acceptance and affirmation is actually going to be possible or happen. And I think that's really fucking hard.
JAMIE ROBERTS: Yeah, makes me just think of like the ever-moving journey of relief and grief, right? That it's a constant journey of every interaction, as there's going to be relief that they get me and they're going to validate it, or is it grief that it's another situation of being dismissed or denied? And, it's like constantly a coming out process or not.
PATRICK CASALE: Yeah.
MEGAN NEFF: I love that. That's dynamic, it's not static. It's we're constantly in that grief and relief. And I love that idea of we're constantly coming out. Yeah, yeah, yeah.
PATRICK CASALE: And I'm a mental health professional. Like, I know how to advocate for myself. So, I'm just thinking in those moments I then have a tertiary layer of grief for people who don't have the ability to advocate for themselves the way I can, because then it becomes the situation medically, especially, where you're like, if you bring something to the attention of a provider and they just dismiss it, and it's a valid concern, you may not seek treatment again, you may just have to, you know, grin and bear it going forward and that fucking sucks, too.
JAMIE ROBERTS: Especially, with how many health conditions are like co-occurring with autism. How many autoimmune things are there that we have to really push an advocate for, for that to even be seen?
PATRICK CASALE: Yeah. Megan, I text you about, like, having a herniated disc in my back the other day, and you're like, "Autism, huh? It sucks."
MEGAN NEFF: Yeah, yeah. I mean, yeah. Our bodies just kind of suck. That's part of the grief. Like, for me, like, well, there's a handful pieces of grief. But for me, it's like encountering the limits in my body and then realizing that they're not going to go anywhere magically. There's like probably no magic diet or pill where I'm all of a sudden going to have a body that's healthy, and not in pain, and can have energy. That is an interesting thing with grief.
Jamie, I like how you talked about the grief of like, when you hold space for folks of like the 30 past years. So, like, there is backward grief of like, all that has happened, because we haven't had an accurate lens for ourselves. And then there's forward grief. Like, what does this identity mean for me moving forward from my relationships? And I think, like, that's interesting to have a foot in both the grief.
JAMIE ROBERTS: Yeah. Yeah, we don't talk about the forward grief very often, do we? But there's like, yeah, the idea of like, what is this going to mean? How is this going to affect me or my relationships, my body, my career, even with the idea of coming out or sharing it or not sharing it with people, there is a weight to that.
PATRICK CASALE: There's a grief too, you know, when Megan you're talking about our bodies just really struggling and having a hard time of it. There's a grief, like I had experienced just the other day in therapy where I was just like, "I don't feel very good almost every single day, whether it's mentally, physically, the combination of both." And my therapist was like, and I said, "I think I'm just grieving the fact that I don't think that's ever going to change." And I am just in that moment, experiencing the grief of acknowledging like, we can try all the techniques and strategies in the world, and we may create some coping, but like, I don't really feel like I'm ever going to truly feel "Good." And that is a hard thing to come to terms with, too.
JAMIE ROBERTS: Makes me think of the image of grief, where it's not that grief gets smaller, but we get bigger to encompass the grief. Like, the grief is always going to be there. It's always a part of us, but how much it impacts our day, our life, our feeling will shift and change. But like, that piece is always kind of there.
MEGAN NEFF: Mm-hmm (affirmative).
JAMIE ROBERTS: And on the relief side, to lighten the mood a little bit, we get these really great communities and we find people that we can have these conversations with, and feel seen, and not go through the grief by ourselves that there are people now so much more publicly and community-oriented to be able to connect with, to find those families, to have these podcasts that we can be heard, and seen, and validated in that way.
MEGAN NEFF: Absolutely, yeah, yeah, deliberation and it's interesting. I often use the word liberation. I think because for me, it was like a freedom of I felt liberated to be me for like, because I was a very high masker. Or I don't love that, I masked a lot. And it really impacted me. Shit, what was I saying? I have a lot of brain fog these days, Jamie.
PATRICK CASALE: You talked about liberation.
MEGAN NEFF: Liberation, yeah, freedom to be myself. And then, like, freedom to connect with people the way that I authentically connect. So much of masking, right, is about I figure out how other people connect and then do that, but I've never actually feel connected. It's been a huge for me to find communities where I genuinely feel connected, even across digital space which is pretty powerful.
JAMIE ROBERTS: Yeah, it's making me think if I hadn't made this connection for myself before, but I went through a divorce three years ago. So, in between my ADHD and my autism assessment, like, was a divorce. And I think part of going through that grief process was an unmasking, because it was shedding like that life, that person who I was or that future I saw wasn't there, which kind of led into this evolving of dyeing my hair, unmasking, setting new boundaries, realigning my relationships, because of that catalyst that opened me up to having more authentic dialogue and communication, and being more true and authentic to myself, which inevitably is unmasking and getting to really recognize who I was before, and who I am now, and how different and the same she is.
MEGAN NEFF: Can I ask you? Because I think that's a fascinating thought experiment. Like, if we were meeting Jamie three, four years ago, like who would we be seeing in front of us?
JAMIE ROBERTS: I would probably, like, be more buttoned up. Like, I'd have more like a professional glean. Like, all the brown hair and like, I don't know, just more like, rigid or structured in how I'm supposed to present. I definitely would be sitting, like, without movement. Now I'm like cross-legged in my chair, like kind of spinning as we're talking.
Like, I remember like, some of the first podcast I was on like four or five years ago, and like how much preparation I put into it to present a certain way. And today, like I rolled out of bed an hour ago and my breakfast is still on the table in front of me, because I know that this is going to be a good conversation, because I'm going to show up as me, and I trust that both of you are too, and it's going to be great. And so I think like a lot of that pressure has reduced and that I get to just show up.
MEGAN NEFF: I love that. It sounds so sad when you talk about your old self, because you feel so alive to me, so engaged, so present. And so that's so sad. Like, it's also hard to imagine you any other way.
JAMIE ROBERTS: I look at pictures of myself just a couple years ago, and I like barely recognize me. And I'm like, "Who is that?" And I think during that marriage, I definitely, like, dimmed my light. So, for that five-year period, I was a smaller version of me. And I think back to like my early 20s. And I'm like, okay, I'm more similar to her than I was this more recent version.
But yeah, I hadn't connected that, that kind of, like, journey, being a part of… And it was a part of it, but like in that relief, grief on masking piece. Thank you guys. Thank you for the therapy there.
MEGAN NEFF: Well, I do think that our relationships change and our relationship structures often change as part of the coming to know ourselves, unmasking. And that's an interesting conversation thread of like, how does coming to know yourself change relationships? And that can be part of the grief too, right? Like, is that it can transform relationships in a way that maybe isn't necessary, but that there's grief in there for some people.
JAMIE ROBERTS: Yeah. And I imagine that too, of like that forward thinking of the relief and grief of how it could change relationships. If we're not performing in the same way or if we're being more authentic, or if we're conserving our energy into relationships, and boundaries, and dynamics that are more, like, healthy fit, that fear or concern about how that might change my relationships with friends or family.
MEGAN NEFF: Absolutely. Especially, if it's like people are used to me being a people pleaser, all of a sudden I'm differentiating, I have boundaries, I'm self-advocating. Like, people in your life are going to be like, "Who is this? These aren't the patterns we're used to?"
JAMIE ROBERTS: Absolutely, absolutely. I'm wondering what you guys both think about this. But I've heard that once you're diagnosed, like, you become more autistic, and I've heard that kind of phrases like, "Well, now I'm unmasking, so a lot of the things I suppressed before are now out." And like, I wonder if you've had that conversation or what that's like about did it become more obvious? Or what has that been?
MEGAN NEFF: For me, it certainly did. Like, partly because I was so dissociated from my body. And once I actually got connected to my body and taking its needs seriously, the way I move, the way I dress, the way I avoid eye contact, like a lot changed. I remember it was probably, like, six months or nine months, okay, I don't love this story, because it relies on the stereotypes, but like, it was an interesting moment of I was walking down the road, like, maybe six or nine months on. I had my sweatpants on like, socks, crocs, like sunglasses and a hat. And I was like, "I look autistic." And it's this interesting moment of like, because in my past masked self, like the big reaction was like, "Oh, you can't be autistic, you don't look autistic. Whatever it means to look autistic."
But I realized in that moment, like I aligned with the stereotype, like, and I think now that people in public could identify me as autistic more easily than ever before. So, for me, that's definitely been true.
PATRICK CASALE: I think my answer is a combination of yes and no. I think a lot of people who now know that I am autistic are probably like, "Yeah, I knew that five to 10 years ago, 20 years ago." my wife when I told her she was like, "Yeah, no shit." And I was like, "Oh, well, I'm also very short, I'm very blunt with my communication, I always have been, I'm not going to participate in things I don't want to participate in. I also think some of that is just privilege of being able to pick and choose when I do and do not want to."
But I've noticed for myself, it's more about permission for the things like Megan just mentioned, eye contact, movement constantly, naming it in public spaces, especially, in my current roles as like a retreat and conference host, I have to name it, because I want to, like, give other people permission, but I also want to give myself permission to sensory soothe when I need to.
So, I think it's just come with more awareness of what my sensory system needs. And being really attuned to that and setting boundaries around it. That's really been a big shift for me. I would say my communication hasn't changed. The way I socialize hasn't changed. Like, a lot of stuff has stayed pretty consistent.
JAMIE ROBERTS: I think a lot of, like, that sensory piece of giving myself permission to not tolerate discomfort. Like, so many spaces, it's like, well, you know what shoes hurt sometimes and you just have to go through it. Well, they don't have to, I can find shoes that don't hurt. I don't have to fit the fashion expectation if it's discomfort. I think if you had asked me before, if like, back to the stereotype, if tags bothered me, I would say absolutely not. And there was a moment during my, like, self-assessment process, where I was getting dressed, I grabbed something new, and I put it on, and I immediately ripped off the tag. And I caught myself, like, mid-motion. And I was like, I automatically, rip out the tags and everything. So, no tags don't bother me, because they don't exist in my clothing. And I hadn't realized that I did that so automatically that it wasn't an issue. And so like just kind of paying attention too, to that piece of what are some of those sensory things that I was already coping with, or already, like, making accommodations for myself, without meaning it as that.
PATRICK CASALE: That's-
MEGAN NEFF: I, oh…
PATRICK CASALE: Oh, sorry. Go ahead Megan.
MEGAN NEFF: I was just saying, I'm, like, constantly amazed by how people intuitively adapt and accommodate for themselves. Like, and with, with the assessment process, I often have to tease out if someone's saying like, "No, I don't have an issue with this or this." I'll do a little bit more drilling to figure out how they're accommodating or if they're accommodating. And often if they're saying, "No, it's not an issue." I'll find like, "Yeah, foods not an issue, because I do X, Y, Z." Like, I do all of these things to make it work for me without realizing, like, how much labor they're putting in. I think that's also part of the interesting, like, discovery process is realizing like, "Oh, I'm working a lot harder than most people."
JAMIE ROBERTS: I like to ask that question about what is your system? How do you do it? Okay, it doesn't bother you how do you do it, so it doesn't bother you of getting an idea about like, what are all of the systems you have to have in place to get to that outcome?
MEGAN NEFF: I like that as a question.
PATRICK CASALE: I like that a lot. Just thinking about what you just said, Jamie, in terms of tags and sensory stuff, like, that's one thing that subtly has changed for me too, of setting boundaries around my sensory needs. So, for example, my dad moved to Florida, he keeps his thermostat at fucking 80 degrees at all times, which is horrible. And the last time I went there, I got my own Airbnb so I could set the thermostat at like 68. And he gave me a hard time about it. And I was just like, "Listen, I'm not going to be uncomfortable in your home. Like, I can't do that. If you want me to, like, spend time, be present, have a good time, I have to have my own space where I can put the air conditioning on, where I don't have to sweat while I'm sleeping or not sleep, because I can't because of the temperature."
So, stuff like that has become paramount for me. And I think it's become, like, at the forefront of a lot of the things I do now.
JAMIE ROBERTS: Yeah, I think that shows up with like some of the boundaries that I've learned to set too, like visiting my parents. Like, I need an activity, I need to know what the activity is, and the time, like set aside for it, so that I can emotionally and physically prepare for it. Some of the open-ended ambiguity of, "We'll just figure it out." Like, is really dysregulated for me, and I'm figuring that out more, as I think I've always thought of it as, "Oh, that's just anxiety. I'm an anxious person." And now I'm like, "Okay, no, the transitions are hard. I need to be able to anticipate so that I can regulate my system for that period of time." And that's been like a big learning curve with it, too. I see all the wheels turning.
PATRICK CASALE: I'm enjoying this conversation. I also just looked at my phone and I know we need to wrap it up soon, because you have something in 10 minutes. So, I'm trying to think about that. I'm always-
JAMIE ROBERTS: It's all good. It's all good.
PATRICK CASALE: …thinking about time.
JAMIE ROBERTS: I can get to that.
PATRICK CASALE: It's so challenging. I'm, like, so focused on it all the time. No, I think there are so many nuances to grief. But I'm glad you named the relief side, Jamie, because we could spend hours talking about the grief side. We could have endless episodes about it from different perspectives. But I do think finding the relief and the abilities to even have small moments of relief, whether it be psychologically, emotionally, physiologically, like, just figuring out those small moments, whatever those are, because it's definitely helped me expand my world and be more comfortable with who I am.
And I'm glad we have this podcast, because a lot of the behind-the-scenes is just Megan and I just sharing text messages of people who have messaged us about this exact thing of like, "Just being able to talk about this feels like relief to me." Even though oftentimes I leave these podcasts thinking I was just in therapy for an hour.
JAMIE ROBERTS: I mean, I guess that's what happens if your bring three clinicians together. We're going to do that work. But absolutely, this podcast is on my reference list for after I do an assessment so people have somewhere to go to hear about their experience, to hear about resources, to hear about some parallels. It's just such a great resource. And there really aren't a lot out there. There's not a lot. We're really creating a lot of that community as we're speaking.
MEGAN NEFF: Yeah, I think it's a really… talk about relief, excitement. I think it's an exciting time for autistic culture. Like, we are. Like, there's so much expansion of autistic culture, increased accessibility to it, which I think really cultivates a sense of belonging, which I think is something a lot of us have spent a lot of our life craving and not fully experiencing. So, yeah, it's an exciting time to be in this world.
PATRICK CASALE: Yeah.
JAMIE ROBERTS: Absolutely.
PATRICK CASALE: Yeah, I think the normalization of experience is relieving, too. So, there's relief in knowing that it's not just me, right? Like, there's relief in knowing, like, other people move through the world in a similar way. And I think that helps with this journey that can be so, I want to try to say a word, but I always get it wrong, tumultuous, that's not the way to say it.
JAMIE ROBERTS: Tumultuous.
MEGAN NEFF: Can I say a word that you can't? Tumultuous. Oh, wait, no, I can't say it.
JAMIE ROBERTS: Tumultuous.
MEGAN NEFF: Tumult…
PATRICK CASALE: The person who does our, like, transcription is going to be like, shaking her head at us right now.
MEGAN NEFF: Tumultuous, tumultuous.
PATRICK CASALE: Yes, thank you. I can't say that word. I can never say that word. But that feels like-
MEGAN NEFF: I can't believe there's a word I can say that you can't.
PATRICK CASALE: From episode 1 to 33, we have now found it. What was the word that we were so [CROSSTALK 00:42:09]-
MEGAN NEFF: Claustrophobic, claustrophobic. Just yesterday, my spouse, I had a migraine yesterday, and I was like, yeah, I had an aura migraine, talking about dyslexia, Jamie. And like, he just kind of chuckled or smiled, and he's like, "You mean, aura?" And he was like, "Why the hell would you spell it aura? Aura."
PATRICK CASALE: Nice.
MEGAN NEFF: Sorry [CROSSTALK 00:42:39]-
PATRICK CASALE: …I can't say it, I can't spell, it doesn't matter. I just mean what I mean. Thank you for both having my back on that. So, yeah, I just think it's normalizing and that feels relieving. And I think that the more we can talk about this stuff publicly, and openly, and share with the world then that feels really fulfilling for me.
And this was a good conversation today. And Jamie, we appreciate you coming on, and making time, and just being so open to it.
JAMIE ROBERTS: Absolutely. Thank you for having me. This was really fun. This was like a really, like, deep conversation. So, I appreciate that.
PATRICK CASALE: We aim to please. So, tell the audience where they can find more of what you've got going on.
JAMIE ROBERTS: Sure. So, I'm Jamie Roberts. I am the founder of Equilibrium Counseling Services in Southern California, where we do individual group, and family therapy for teens and adolescents. You can find me on all social media @neurodivergenttherapist. And I recently launched a new course for clinicians on becoming a neurodivergent affirming provider. And so that's available on our website as well to kind of hone some of those skills, to be affirming for the clients that are coming in who are identifying as neurodivergent.
PATRICK CASALE: Awesome, Megan, you got anything before I close it out? Nop?
MEGAN NEFF: I never have anything good at conclusions.
PATRICK CASALE: You got some good comments in some of our Instagram posts like, "Megan, Dr. Neff rocked the awkward goodbye without Patrick." So, I was like, "What the fuck?" Thanks for pointing that out ya'll.
All right, for everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all podcast platforms and YouTube. Like, download, subscribe, and share. And goodbye.
