What does it mean to understand your own nervous system — and your access needs — after a lifetime of masking, burnout, or being misunderstood? In this episode, community panelists reflect on the often painful process of unlearning internalized messages and beginning to name what they need. This conversation also explores the power of connection: how healing can begin when we're seen, heard, and surrounded by others on similar paths.
This conversation was originally recorded as part of All Brains Belong’s Brain Club® — a weekly community education program focused on demonstrating neuroinclusive culture in action.
Brain Club is not medical advice or a support group — it’s an invitation to think differently about health, connection, and how we build systems that include everyone.
Join us live most Tuesdays at 6:00 PM ET and explore 4 years of past videos at allbrainsbelong.org/brain-club
Content warning: Around the 30-minute mark, there is discussion of suicidality in autistic adults — please take care while listening.
AnnaRose Jenisch, Linnea Noyes Alvar R, Peter Sher
Speaker accessibility note:
One of our speakers uses a speech-generating device activated by eye gaze. The volume of these segments may be quieter than others, so we invite you to turn up your volume if needed to hear their full contributions.
Brain Club®: The Podcast - Episode 2 - Understanding Your Nervous System
Mel Houser: [00:00:00] Hello! Welcome to Brain Club: The Podcast, a space for learning, unlearning, and reimagining new ways of being together in neuro inclusive community. I'm Dr. Mel Houser, Executive Director of All Brains Belong Vermont. Welcome to our brand new podcast.
Brain Club is All Brains Belong's weekly community education program where we demonstrate our approach to neuro inclusive culture through community panels, guest speakers, and book chats. It's a place where we shift broader community awareness about the issues of concern and importance to neurodivergent people in our community and promote new ways of thinking and being in community together.
It's a place where we transform culture by modeling what's possible, with the idea that then you go out into the rest of your lives and carry it forward.
You can already access all the recordings from our website, allbrainsbelong.org, but our community asked us to turn it into a podcast. So here we are. These conversations are not medical advice and they're not support groups.
They're an invitation to [00:01:00] think differently about health, connection and how we build systems that include everyone. Each episode features community panelists, sharing perspectives and lived experiences. We hope you'll listen with curiosity and reflect on what it brings up for your own life.
In this community conversation, we talk about the journey of coming to understand your nervous system and what it means to discover often for the first time what you need for full and meaningful participation. We call this access needs. It's not easy. Here, you'll hear honest reflections about pain, exhaustion, burnout, and unlearning the messages so many of us have internalized through our lives.
Around the 30 minute mark. There is a brief discussion of suicidality in autistic adults. Please take care while listening.
You'll also hear how connection to community, to language to self can be part of the healing process. There's no one way this process looks. And being in a space where we don't have to [00:02:00] pretend where the struggle is named, where different brains and bodies are understood makes it possible to begin. We are so grateful to our community members for sharing their stories.
Thank you to Peter Cher Lyne, Noy, Anna Rose, Jenis, and Alvar r. A note about speaker accessibility. One of our speakers uses a speech generating device activated by eye gaze. The volume of these segments may be quieter than others, so we invite you to turn up your volume if needed, to hear his full contributions.
The theme of the month is going to be around nervous system regulation. I wonder if you could say anything about what it's, what it's been like to like, reflect on your own access needs, that support your own regulation.
Linnea Noyes: It's much easier to see and support someone else with their nervous system dysregulation than it is your own when it shows up in your own system.
Your brain is not online to help you with it, [00:03:00] particularly. Sometimes it co it comes around and I have things like, you know, there are things I know to do, but even the things I know to do, sometimes I would, I two, two or three days later, you're like, oh, you could have done that, but didn't happen.
Mel Houser: A lot of times when we talk about access needs and nervous system regulation and all the things, A lot of times the panelists are people who have been like thinking about this for a while, maybe even years, and I think there's a lot of people in the audience who's like, I can't relate to that. Like I am in. I am in chaos. I like, I don't even know where to start. Like this is all so new to me. And like, yeah, I'm learning some things, but I mostly like am in chaos.
And so we thought, well, how about we reach out to people who are like kind of early in their journey? Maybe we could just, we could rewind a bit and, I'd, I'd love to know what, what your life was like before joining the A BB community.
AnnaRose Jenisch: I was diagnosed A DHD [00:04:00] last year and that. I guess I'd been wondering for a while, but also I really didn't know much at all about neurodivergence, lots of stereotypes and tropes and so it took me a number of years and then like there were certain things that continued to be hard and it became glaringly obvious that maybe I was also autistic.
So. My life up until then was really, I didn't really know what was going on with me,
Peter Sher: but I've been searching for something my whole life. I mean, since, since I was a little kid. But then as I got older, like I was, I've been in therapy my entire life. I had child abuse and. And so I focused on that and then like recovery gave me a way to be like introspective and [00:05:00] learn a lot about myself.
But there was always this huge piece missing. Like people talk about, people talk about like when they come into recovery, they're like, oh my God, I found my family. I was like. You're a lot like my family that I can say some stuff about me, but there's other stuff. I mean, they say out and out somewhere in the recovery literature that like, bill Wilson, the guy who started AA is like alcoholics are too sensitive.
Alvar R.: Those who see my autism diagnosis or my multiple medical diagnoses and decide, I must be quote, too sensitive. An unreliable witness to my own experiences and or unworthy of their time. It has also been frustrating because what I have sought to [00:06:00] educate and understand myself by reading medical research and textbooks from, I was able to communicate my pain and symptoms.
I was often told that what I said was happening in my body and brain wasn't in fact happening. Or even that it wasn't in fact possible.
Peter Sher: That's what you guys showed me. That was my, I didn't, wasn't even totally aware of it, but I always had this voice and I always try. I didn't know what masking was and it hit me in the past few days.
It's trying to act like I'm not sensitive
Linnea Noyes: What's really relatively new for me, but seems in my personal life to be showing up in, Experience after experience, after experience. It's like it's the whole thing's starting to unlayer and it has to do with, masking. And so I keep running into it [00:07:00] in different contexts.
an awareness that I'm doing something that doesn't really support my needs. Or saying something that is prioritizing someone else instead of myself. So, and a second way that's coming in is that, you know, I have all the things and I have a, a very old accident that still is bothersome, and I'm just beginning to realize how much of the variation in my symptoms is driven by my nervous system.
Alvar R.: My health had been declining for a couple years, but I couldn't seem to find doctors who were willing to do anything about it. When my therapist at the time was on vacation, I [00:08:00] was allowed to meet with their supervisor instead, who ended up sharing all brains, belongs all the things resource with me. I recognized so much of what I'd been experiencing in those pages, which eventually led to me becoming a part of the virtual a b b Community as well as deciding to share the resource with my primary care physician.
It would be disingenuous to suggest my life is completely different, or that my health is 100% better due to having joined the a. B. B community, though perhaps that more so be the case if I move to Vermont, LOL. Even so significant positive changes have taken place in the last year and [00:09:00] all brains belong has definitely played a role in that.
Peter Sher: I'm really sick. I mean, I'm, I'm, I'm, I'm really limited, but, but I'm happier in a lot of ways than I've ever been, you know? Yeah, in the time I've been coming to see to All Brains belong, I became aware that it took a while, that maybe being sensitive wasn't a fault, and that it wasn't something, you know, like a character defect, that's what they call things in AA.
And somehow I shifted from wanting to fix my sensitivity, realizing my sensitivity was a sign of what I needed, and. And, and that so freaking bizarre that I'm house bound, but I'm more self-loving than I've ever been in my whole life. And that's from this
Mel Houser: what you're really describing is like coming into alignment with your [00:10:00] values, coming into your authenticity.
And that's, I mean. People don't know. They don't know how out of alignment with their authenticity, they really are because they are, you know, you're, you're, we're all brainwashed and socialized into like this one size fits all way.
AnnaRose Jenisch: I was really trying to fix things that were never broken. Um, and that's a huge, huge gift that I've been given already to understand.
I don't have to fix this stuff. You're really, really, really not broken. It's really not you. The world is not, our world is not, it's not set up for all of us. It's not inviting to all of us. And, um, it's really, really painful.
Alvar R.: It has been both enlightening and frustrating. To better understand my [00:11:00] nervous system and access needs, my increased understanding has allowed me to better accommodate myself and articulate what I need from my environment and others.
And has offered me phrases and terms to use to improve the likelihood my needs are taken seriously
Linnea Noyes: how helpful it's been to understand post exertional malaise and, and also I'm learning to consider stopping. I can't even tell you how many times I look back on the afternoon or the day and say, oh my gosh, you just.
You felt pain somewhere, but you kept doing what you were doing anyway. And so just so many things like that, like it's, it's pretty radical to actually stop.
I mean, that's so hard. [00:12:00] 'cause it is so radical. It is so counter to everything we've been taught for like decades and decades and decades of our lives.
It's part of the mask. Pushing through most exertional malaise is part of the mask.
Linnea Noyes: Oh wow. Yeah. There's so much denying or thinking there's something wrong. You know, these things, people aren't usually going around talking about that, oh, there must be something wrong with me or whatever. But there, it's inside.
It's the inside voice, you know? It's like something not okay with you.
Mel Houser: Yeah. Yeah. I'm, I'm fundamentally not okay as a human, and I hope no one figures that out about me.
Linnea Noyes: Yeah. Yeah, because. Ultimately it's the safety issue again, not feeling safe in the situation there.
Mel Houser: There was no, at least in my training, there was like no consideration for like everyday life, how your nervous system reacts to things external to you and internal to you, and like memories of things external and internal to you like.
All, all of that, and it's happening all day long and [00:13:00] people don't, they don't have that framework. And so, you know, there's so much, there's so much judgment, like self-judgment and shame of just like, what the hell's wrong with me that I'm having these. Responses, like, why am I, like no one else seems to be having these responses,
Alvar R.: but obviously I can't control other people.
So my improved understanding and ability to articulate doesn't always change someone else's actions. Which is something I continue to struggle with as I become dysregulated and even meltdown rather frequently, despite having gone through the process of identifying what activates my sympathetic nervous system and what helps me self-regulate
AnnaRose Jenisch: really on my own, trying to figure out why I was the way I was and not.
You know, just trying to pull from like social media or different, different peer reviewed, [00:14:00] whatever that I could find. and knowing that this was really, really big, and I remember after being diagnosed with a ADHD saying, I felt like a transformer, or my life felt like a transformer, where suddenly everything.
Just became evident and I became like I could see myself as I was, and also it felt like I was, could finally see myself in three dimension
Peter Sher: Yeah. I appreciated it. It's helped. It's, I feel like, yeah, it, it made such a huge piece of my, it made me whole. It made me whole. Right. Because, um, 'cause there was, I've been on an introspective journey my entire freaking life. Religions too. All kinds of stuff. And [00:15:00] there's this huge piece that it's just, I'm autistic. That's, that's, it's,
my dad didn't make me hyper moral. I, I, it's just how I am. And. Now that I know that about myself, I can be like, Peter, it's not your job to decide what's right or wrong about everything, you know? Yeah. And also hyper empathetic. Why it was, everything. It makes sense that I was a doctor, that I was really good at it, but it freaking. Me up because I felt every single thing.
Mel Houser: I don't know. I think professionals who support other people's nervous systems, I think we mask more than anyone.
Linnea Noyes: Yeah. I'm just, it's, I'm shocked at how when you something first gets your attention and you really [00:16:00] start to look at it, and then it starts showing up in your dreams and it starts showing up in, it showed up this morning.
In a work situation. so it's very, and I'm grateful I can say that, so grateful to see it at last because I can also feel the toll it takes on your body and your nervous system to be that vigilant and careful about what comes out of your mouth, you know?
Mel Houser: Absolutely. And I think that, you know, like those of us with, with all the things, I think in many ways when we don't pay attention to our nervous systems, it's our immune system that's like, I'll show you, you will pay attention to me.
Alvar R.: It's difficult to look back at all of the suffering I endured and time lost, having to wait until encountering all brains. [00:17:00] Belong last year when I was finally able to see my body and brain reflected and be able to learn more about how they function, as well as more about my access needs and autonomic nervous systems specifically.
Overall, what I've learned and the understanding I've gained has helped me in my own efforts to improve my health and keep myself regulated, as well as helped me to advocate. Ideally, I would avoid environment and situations that are unsafe, but that's not possible for me right now. I don't yet have an effective solution to this ongoing challenge.
But I decided that naming it could be helpful for those with a similar experience who may be feeling bad about their inability to eliminate dysregulation.
AnnaRose Jenisch: And I'm slowly, slowly learning to [00:18:00] connect with others around it. I, you know, I'm, I'm realizing how, why I've, it's been hard for me to trust kind of general social interactions a lot of the time. and I'm just allowing myself to ease gently into it, even though, you know, top down, I know this is a very safe community, but still these reflexes of
Alvar R.: while I continue to be isolated, most of the time, I'm now a part of the ABB community and enjoy connecting with and learning from people with similar lived experience each week at Brain Club, which has become something I look forward to every Tuesday at Brain Club.
I have been learning techniques for better self-management of my symptoms and that I'm not alone in my challenges and [00:19:00] experiences. Which has encouraged me to work towards greater self-compassion as opposed to internally berating myself with the negative things I've been told about how and who I am.
Mel Houser: Instead, I need like constant feedback of like where I am in time and space and relationship. 'cause I can't tell otherwise. And I think that that thing that. Signal thing. I think that probably applies to so, so many things, like what happens when, you know, like I'm at a staff meeting and everybody has their screen off 'cause like that's what people are more comfortable doing. But then I'll ask a question and like radio silence, like crickets and like, did I say the wrong thing? It's the experience of being a late identified neurodivergent person. I think that's just what goes on. And it may always be that way.
AnnaRose Jenisch: That's very interesting.
Again, here I am in real time, like hearing this experience from you [00:20:00] and your language around it. That's absolutely it. Like when I'm writing an email at, in my job to one person a little bit, but to a group of people, I get frozen and you just kind of gave me that language and yeah, that experience around it that it's like, where is this? How is this landing?
Linnea Noyes: I'll just put one other topic on the table, which is, PDA. I so resonate with, with being a PDAer how, well, and it affects my access needs in a lot of ways. Especially, I find like in group situations where n neurodiversity isn't part of the conversation and I don't have a way, there's no one even asking.[00:21:00]
I just get, there's just comments, you know, about I don't talk that much or something like that in that situation. And and I realized like. When in this particular it has, it's a totally different group that I'm in, but they'll ask a direct question that has to do with history or having read something that week.
And the moment it's asked the direct question, my brain goes offline, I can't, I cannot think of one single thing. And then if other people start answering the question, it's even worse. 'cause if I did have some ideas I wanted to express listening to other people. I can't access my brain again. So those are just a couple things that I've become really aware of and would name as, as access needs.
Mel Houser: What a great example. I mean, I think that's just so [00:22:00] common and like these things happen and we like don't have language or a lens to understand why they happen. And sometimes we feel, you know, some, some people feel bad under those circumstances. Like, what's wrong with me? I can't, like, I can't access my thoughts.
Like, why can't I just answer the questions? Like, yeah, I can't answer the question 'cause it's not safe. To answer the question, a direct question is too intense. It's too much pressure, and my limbic system just won't let me. It just won't let me.
Peter Sher: Yeah, if I don't like, if I say I don't like to be touched, that means I don't ever like to be touched, but I do like to be touched sometimes.
Mel Houser: Totally. I mean, a lot comes up for me about this. So one is like, is it the case that, like from a pure sensory perspective, like there's a difference right in the like. The receptors between light touch and deep touch, like deep pressure.
And so like light touch for a lot of people is like cringey of just like creepy crawly light touch. And so if the touch that a person is cringing from it, like, [00:23:00] might be because the light touch receptors. Oh my gosh. Not that touch.
It also might be like a lot of, I mean, first off, there's like this huge, just like there's this huge continuum of, of how, of neuro types. Um, there's like a huge continuum of gender, of sexuality. There's like, everything's on a continuum and so it may very well be that like people don't want touch unless there are other, like requirements met, like the safety of a relationship or you know, certain other things.
Or then there's also the internal conflicting access needs of like, you brought up smell. If a person has the kind of brain that like notices all the smells or like all the textures or like all the things, that it may be that those things are like, at best distracting, at, you know, in a lot of instances really offputting.
AnnaRose Jenisch: I remember what you said. I, I think it was in BOOST but I don't remember that some people will never understand [00:24:00] us. And so, and if they want to understand us, they'll ask clarifying questions. They'll be curious. And so I get to just. Send that email and say, oh, yep, there's that feeling again. It's gonna be there and I'm gonna send it anyway. And generally it works out fine. And if it doesn't, they can ask me to what I'm, yeah.
Mel Houser: I think it will be interesting over time to say like, you know. Different from I want to change or fix or in some way be a different person. But like, does my experience change?
I am the same person, but does my experience of the same thing change over time as my own self narrative shifts?
Like there'll be some light bulbs, click like, oh yeah, no, we've asked some questions. I just blank. Yeah, I mean, I've been doing that since elementary school. My nervous system doesn't feel it safe to be asked questions while other people are waiting for me to answer.
Linnea Noyes: That's it. Exactly. Yeah.
Mel Houser: And it just, it it is, it just is. That's [00:25:00] how our brains work. Yeah. But maybe I like, wanna make sure I'm not in those situations. Maybe I wanna say ahead of time, you know, can you, if you're gonna ask some questions in this group, can you send 'em ahead of time?
Linnea Noyes: Yeah. Things like that definitely help
Mel Houser: And you get to do that. Like you, you get to ask for what you need.
Peter Sher: I would just shut down and wouldn't be able to talk.
Mel Houser: Yes. Yeah. That's how I got my autism diagnosis, was that
Peter Sher: Ohhh, so my story about that was that I was being a dickhead.
Mel Houser: It's the blue screen of death on your computer, like when the, like the, whatever the part of the computer that gets too hot and overheated and the like blue screens to like shut down so it doesn't catch on fire.
I think our brains do that. But like, that's the narrative of like, you know, somebody observes that, they make up a story about that, and they tell you that that's your story. You don't care about other people. It's like that could, that could not possibly be
Peter Sher: you're being passive aggressive or something like, like,
Mel Houser: yeah. Like there's all these, there's all these things that like when viewed through the lens of nervous system [00:26:00] regulation, it's like, oh, this is like what you observe from the outside. That is just the nervous system manifesting like the underlying physiology. So like, oh, I'm in a, I'm having a nervous system response.
And so like what you see is the consequence of the nervous system response. But like we, we didn't grow up, like we didn't grow up thinking about nervous systems, like we didn't know we had them.
Linnea Noyes: The reality of our biological selves and the needs that we, that are actually wired into our system. And early co-regulation is one of those, and a lot of people didn't get it.
Um, a lot of us didn't get it in my generation, you know, it was more of a hands-off kind of parenting and, [00:27:00] benign neglect we could call it or something, you know, like, and, So we may not, and then there's judgment around needs too, you know, that, that were broken in some way, like you're, and that isn't the case, you know?
So if people are wondering like, what's going on with them, I just think diving in deeper and just see what. This system in particular, what ABB has to offer. If they have, you know, if they have access to that, explore it and see what resonates because you'll, you'll run into it, you know, if it's, if it's happening for you, too
Mel Houser: Totally. And I think that like, Sometimes like a program like brain club or group medical appointments, or there's other people sharing that's the oblique angle for the PDA or for whom. It's too intense and too direct to be for somebody to like walk you through self-reflection. Like where it's not your [00:28:00] idea or something as, as opposed to like somebody else's talking about themselves.
And you have your own autonomous appraisal of how something applies to you or not that you run with or not.
Linnea Noyes: That's right.
AnnaRose Jenisch: That's a huge, huge gift that I've been given already to understand I don't have to fix this stuff. I get to now understand why. I get to understand what's happening. I get language for it, which is so impactful.
I get to hear other people talking about their experience, and I get to. Have the tools to help myself and to think about things. Again, I'm like one another special interest is like disability rights and, I never thought that I had access needs and that I had a right to them, and now I get to slowly reframe for [00:29:00] myself or not broken.
We're not broken. And there are, there are ways we can, we can ask for, for needs, for our needs to be met, to expect that our needs will be met, that these are indeed access needs, and that I get to learn what they are and I get to ask for them. And if I don't get them, I get to figure out how I can pivot my own life.
So it's really empowering,
Alvar R.: I can very much empathize with and relate to those feelings stuck, overwhelmed, and or burned out. I suppose my advice consists of three parts. One, identifying your access needs is important, but it won't help unless you actually accommodate yourself and surround yourself with people willing to accommodate you.
Which I've personally found to be more [00:30:00] difficult than the initial identification, requiring unlearning the messages that have been taught to most people over the years too. Finding and engaging with community is essential so that you are able to realize you are not alone. Which helps with self-compassion and so that you can learn practical tips from others with similar challenges, which helps with the numerous aspects of chronic illness and neurodivergence that are difficult even without discrimination, internalized ableism, and or marginalization
while I personally ruled out suicide as an option several years ago after experiencing too many new and ongoing health issues from surviving attempts I scientifically shouldn't have, since suicide continues to be a statistically significant cause of death for autistic and otherwise [00:31:00] neurodivergent individuals.
I will close with sharing the advice I've often offered to those understandably struggling with existence in a world too often downright hostile to us.
I won't claim that your life will be 100% better tomorrow or even next year, and I likewise won't try to convince you that your life will for sure get and stay better.
I also won't attempt to guilt you into staying. But rather I invite you to be curious about what could be. Your life on this current plane can only get better as long as you are alive. So while death may allow you to avoid potential future suffering, it also keeps you from enjoying potential future love, joy, and peace.
Whatever your reason for holding on. Whether seemingly big or small, I [00:32:00] hope you will stay alive long enough to meet folks who respect and love you for all of you, and just as importantly, long enough for you to appreciate your own inherent value and worth.
Mel Houser: These stories remind us that understanding your access needs is a deeply
personal process that often starts in isolation, but it doesn't have to stay this way. When we share language, when we witness each other, when we build spaces where needs are expected, that's where healing becomes possible.
If you wanna keep exploring with us, you can join our Live Brain Club events most Tuesdays at 6:00 PM Eastern. You can also dig into our free digital resource library with all the recordings from the past four years at allbrainsbelong.org.
You're not alone, and we're glad you're here. See you next time.
