The 5 Stages
Are you figuring out as an adult that you’re Autistic, not broken, weird (in a bad way), or wrong after all? And figuring out what that means for your life?
This describes what to expect after you figure out as an adult that you’re autistic. The 5 stages we predictably go through. Our individual circumstances, lives, and personalities are all unique, but there are some reliable patterns to the journey, and some consistent hangups that block progress.
This workshop is geared toward Autistics, AuDHDers, and other neurodivergent people and is inclusive. The presenter is likewise AuDHD.
This is a recording of a workshop hosted by Heather Cook of Autism Chrysalis on 14 May, 2024.
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Here’s the full transcript
0:06
Hello, everyone. This is Heather Cook of Autism chrysalis, and we’re gonna go ahead and get started with our workshop. Today is May 14 2024. And this is what to expect in the later identified autism journey. It’s like kind of what’s going to happen? What to expect after you figured out after childhood, in teens or adulthood, “oh, wow, I’m autistic. What’s next?”
0:37
All right, I’m gonna share my screen. All right. How is this looking? All right. So just a couple of quick details. Before we get started, you are welcome to have your camera off or on and change your choice at any time. I do not mind. You’re welcome to move around, to fidget, stim, tick, doodle, look away. See to whatever needs you have, you’re welcome to leave, come and go get food, whatever, take care of yourself. There’s lots of ways to pay attention. And it doesn’t have to be just sitting still on staring at a speaker. Sometimes that interferes with paying attention. And as far as making zoom comfortable for you, you can turn on or off the chat feature, or the closed captioning, and the little picture of yourself by clicking the three dots in the top right of your own square, click the three dots and turn off self view, you can also turn off the closed captions in the chat the same way. And I would ask to keep your microphone on mute. If you’re not actively trying to talk, just to reduce the background noise. A lot of us do have sensory sensitivities, and that can be very difficult. Alright.
2:23
Okay, so here’s the plan for today, just so that you know what to expect. And do a short intro, I’m going to share a little bit about my own journey, figuring out that I’m autistic and kind of what happened afterwards. And then we’ll look at the five stages, this is really the heart of most of the presentation today, it’s going to be these five stages that I’ve figured out are the fairly common predictable patterns of what people go through after they figured out they’re autistic, and are trying to make their life better. We’re going to look at each of those stages in depth, have a brief reflection. If there’s time, at the end, we’ll do some Q & A. But based upon my track record, that’s unlikely just to be totally upfront about that, and then we’ll close and you’ll get the recording and the transcripts in a day or two, soon as we can get it all taken care of. So that’s the plan.
3:25
And just so that you can, don’t worry about this the entire time. This is not a sales pitch, this is an info dump. This is just me trying to give out good useful information. So I’m not going to be pitching my services. I do ask for feedback from these workshops. I have a link there, and there’ll be a link in the chat at the end, just so that I can get some feedback and make these workshops better. The one little maybe caveat to that though, the workshop is absolutely free, the transcript is free, they’ll be free in complete forever. But I will be selling the slides afterwards because many people have asked for them. And it does take me quite a bit to put these workshops on. So that’s a nice little bit of a supplement for me. So they’ll be available for a nominal fee afterwards if you’re interested. The workshop itself, forever free. Okay.
4:22
So, a little bit about me. My name is Heather Cook, my pronouns are she/her, and I figured out that I’m autistic at 33. It was a big surprise to me. I got my diagnosis, six months later, and that led to figuring out so many things about myself. I figured out that I have sensory processing differences, CPTSD. I actually kind of knew about that one, but figured out a few years later that I’m also ADHD. A number of big revelations came about. It helped me figure it out, I’ve had this string of medical issues – oh, I have Ehlers Danlos Syndrome, that’s why. It explained why I had so many people issues, so many people traumas, why I struggled to keep jobs, why I was repeatedly going into burnout, it explains so many things. And as I figured out those things, as I healed those things, I also found friendship, companionship. I got some of my energy back and I found purpose, I found a mission in life. That’s what I’m doing now. And that led to me, eventually, starting to coach, got certified as a life coach, and I work with other Autistics and other neurodivergent humans to build a life that works for us, not social expectations, but like what actually works for you.
5:50
Alright, I also want to acknowledge before we get into this too much further, that the systematic exclusion and oppression of differences from the perceived ideal of the majority of power holders, which in this country is white, neuro-normative males, has been a part of our system since colonization. And so many people have suffered and died because that ideal was valued more than people. We’re going to be talking about that in relation to the effects of that on Autistics. But it has affected a lot of people in a lot of different ways and in this place where I live and work, it’s because a lot of people lost their lives, their livelihoods, their culture, their language, and I’m specifically referring to the Omaha tribes, the Ponca, the Ioway, the Otoe, Missouri, Sauk and Fox tribes.
6:54
Okay, so a little bit more about me, my journey of figuring out I’m autistic. So this began for me in the fall of 2015, I had been gradually digging myself out of my most recent major burnout for about nine months at that point. This is like, I’ve had multiple burnouts but this was the second one that was life-collapsing for a significant period of time. And I was at a friend’s house and she mentioned randomly, not specifically directed at me, it was just like, hey, here’s something interesting that I found. She’d read an article on how women presents signs of autism differently than men do. And that’s literally all she said. And a light bulb went off in my head, something connected. And I went on this research rabbit hole. And within two days, I was absolutely convinced that this explained everything in my life, like this was it. I had found my reason. And the next week, I walked into my therapist’s office, and I plunked myself down on her couch, and I announced proudly, “I figured it out! I know what’s wrong with me!” And she said, “Autism.” And I was like, “What the hell? You knew? Why didn’t you tell me?” And it was kind of deflating.
8:18
But what I figured out like, I had phrased it at the time, I figured out what’s wrong with me, I had been phrasing that way in my head all of these years of like, what’s wrong with me. But once I had that lens, like, Oh, I’m autistic. My brain is simply wired differently – it was my permission. I called it my Get Out of Jail Free card, it was like, I didn’t have to see myself as broken anymore. I didn’t have to see myself as wrong or as less than human or as from a different planet. There were so many words that I had applied to myself that were hurtful, that were painful, and that I had heard from other people. That’s how I applied them to myself, as I’d heard them from originally from others, often in the form of complaints. Why can’t you just be normal? What’s wrong with you? Why can’t you just whatever? But now, I had this reason, it wasn’t an excuse. It was an explanation. It was like, Oh, my brain is just wired differently. I process things differently. I socialize differently. My natural reactions are different. I take in a lot more information about my sensory environment than is standard. And other people don’t know how to respond to that. And now I have a reason for it. Okay, well, maybe I can do something about that sensory stuff. Maybe I can do something about all of these things.
9:59
And so, for me, the first couple of days, I was pretty convinced that I was autistic. I was absolutely convinced. But over the next few months, there was a whole lot of doubts came up, Am I blowing this out of proportion? Am I making a big deal out of nothing? Am I overly fixating on a couple of things and ignoring all of the other stuff, et cetera, et cetera. So there was a lot of doubts that came up. It took a while to find someone who would assess adults in my area and I did get an assessment about six months later. And he confirmed that I am autistic. And I was so nervous about that assessment that I went through the DSM criteria as well as the UK version of that – the name is escaping me at the moment. It’s like an A profile, whatever. And I went through them both and line by line described so many things for my life that explained and I walked in with this thumb drive with this 55 page document on it. It was such an autistic thing to do. But even just from our conversation, he told me at the end, he didn’t say 100%, he couldn’t give me an actual answer, I think for legal reasons, but he strongly hinted that he was pretty convinced, even before he looked at that document, and that really capped it. Anyway.
11:33
So I had this external verification and yet I still had doubts. I still like this process tools like was I just faking it? Was I putting on a performance for him, was I skewing the assessment? But over time, those doubts faded. And it led into other things. That’s the first stage by the way that I’m gonna be getting into. We all go through it. It’s the doubting, it’s the questioning. But anyway, essentially, what happened with that is when I figured out that I’m autistic, I was still waiting for the diagnosis appointment, so still in the fall of 2015, I knew that something big had to change in my life. I was in major burnout. I was struggling to keep my very part time job. At the end of the 2015 school year, I quit working at public school as a high school teacher and I continued working at the community college as adjunct faculty just one class a semester, and I was struggling to do that. It was two evenings a week and I was struggling. And I knew something big had to change. And I knew that I couldn’t do it where I was. I had been trying to make positive changes in my life for several years at that point. Actually for at least five or six years, I had been actively trying to make changes, but it was just too hard. I was too ingrained in my habits and my routines, in the ways I was responding to things, I knew something major had to change, otherwise, I was never going to get out of this. And where my train of thought led me was to basically deciding that I needed to leave home and travel for a while but I didn’t like lots of change. So I needed to be able to take my home with me. So I did lots of research on RVs and tiny houses that you can drive around. But there was lots of issues with those. I ended up with basically a van and I spent close to a year converting this van entirely by myself a little bit at a time because I was still struggling with burnout and I didn’t have a lot of energy. But I did like six months of research and then bought the thing and then about six months of converting the van and moved into the van, rented out my house and set out on the road. And that was my attempt to figure myself out. It was the best thing I’ve ever done in my life, and it was the hardest thing that I’ve ever done in my life. It was three years of a very intense introspection and a lot of practical stuff about it was hard too, like I was in a new place all the time and yes these are pictures of my van and me inside it. Well. I was taking the photo. I wasn’t inside the van at the time, but that’s where I lived. That one in snow, yes, I was actually sleeping in that van in that snow.
14:53
Okay, so as I was on this journey I started understanding myself differently. I started figuring out my sensory stuff, I started figuring out my communication stuff, I started figuring out relationship stuff. Even though I was in the van, I would regularly stop at a friend’s house and stay with them for a while and have people to deal with. And there was always new revelations with different friends and different family members, and just random people that I would meet at grocery stores. There was always a new grocery store. By the way, that was one of the most stressful things for me ever. Like, every single time I wanted to go shopping for food, there was a new grocery store and everything was in a different place. There was no routine to it. There was no like, I just know where the tortillas are. There was none of that. Oh, my goodness, most stressful thing in about van life. That and finding showers. Okay, off of tangent.
15:48
What I did was a lot of crying, a lot of journaling, a lot of meditating or attempts at that, a lot of figuring out body stuff, a lot of rehashing my life, a lot of explaining things that had happened. A lot of talking to my mom on the phone and hashing out, Oh, what about this thing? And what about that thing from my past? And I started reconnecting with people and connecting with old friends in new ways, building relationships, repairing relationships, letting some relationships go, finding new people in my life that I connected with in new and different ways. It was such a transformative experience. And I noticed so many things were changing inside me. And other people started noticing them too. At some point I started being more expressive, that flat effect was fading. I was more aware of my own emotions, I was laughing more, smiling more. My sense of humor came back, my energy came back, I started having interests again, wanting to do things, wanting to have like a whole new career. I don’t need to get into that tangent. Anyway, so many things started changing. And it was really obvious to other people and the people who knew me, they could see it. And the new people that were coming into my life, they started treating me differently than other people had in the past because my energy was very different. I was very different. I was relating differently. I was acting differently. I was acting more myself, I was being more comfortable with being myself around others, and being more okay with being comfortable around other people. I was more comfortable in my own skin than I had ever been in my life.
17:50
And people started coming to me out of the blue for advice. They were like, Hey, can you talk to my autistic friend? Hey, can you talk to my autistic cousin? Hey, can you talk to me about stuff? Some of my friends that had been friends since since my college days, they started calling me because they wanted to talk about their lives and about stuff they were going through. That has never happened to me before. I was the person that they called for tech stuff or like, Hey, how can you fix this thing for me, not for let me talk about my life and my emotions. That was completely new and it really threw me off. But I actually found that I enjoyed it, surprisingly. That completely shocked me. I liked it. I liked talking to people for the first time in my life. I started getting energy from it for the first time in my life. All sorts of things started connecting in new ways, in my brain, in my body, in my understanding of things. And the pandemic hit. For family reasons I needed to be able to stay with my mom, help her out. And so I left the van in the driveway. My mind went blank for a second. Right. Okay, so I needed some money, I started doing some peer counseling for a little while, found out that I could do it, that I liked it, got a little bit of training, I wanted more and also wanted to get paid more than minimum wage and started coaching and found that I was good at it. Anyway, I wanted to get some training, got some training, etc, etc. It’s been about four and a half years that I’ve been coaching now. And things are still continuing to grow. Things are still transforming inside me and I’m still seeing the effects and as I more and more heal – when I say heal, I’m talking about healing from the effects of being told that I wasn’t okay. The effects of the trauma, the effects of being different in a neuronormative society which basically means being more autistic, being more comfortable with it, being comfortable with being myself. So that’s a little bit about my journey.
20:28
And I want to point out a couple of the things that I have learned in that journey. And I already touched on this. I’m not broken, I’m wired differently than the neuromajority. And that’s okay. That’s great. That’s wonderful. We need people who are different. We’re all different anyway. I don’t really think that there is a neurotypical. I also learned that most of what has hurt me has not actually been my autism, but the intensity of my sensory experiences in the world, and the reactions of people to my sensory experiences being different, to my style of communicating being different, and to other people reacting to my not meeting their expectations. That’s what’s been hurtful, not the autism. I’ve also learned that it’s okay to think differently, to think in my own style, to process things in my own style, to socialize and play and live in my own style. It’s okay, I can set up my life the way that works for me, and it almost never affects anyone else, so it’s okay for me to do that.
21:43
And I learned that there’s a difference between the way I am and a trauma response. This was an interesting one. When I first figured out that I’m autistic, there was a number of things that was just like, oh, I’m just an all or nothing thinker. That’s just the way that I am. And that was comforting for a while. But as I did more and more of those personal development stuff, and personal transformation, I started noticing that I think that’s actually a trauma response – that my brain finds comfort in having absolutes. My brain finds that it’s hard to predict a lot of the world and a lot of people. And so I tend to find comfort in trying to make things into absolutes. So things tend to be sorted into an all or a nothing, especially when I’m stressed. And one of my biggest revelations was, it’s not all or nothing. And I’ll still say that phrase to myself, frequently, multiple times a week. It’s not all or nothing, when I find myself trying to do some project, and I think that I have to finish it all, or there’s no point in starting. All sorts of different little things in life like that. And I’ve gotten better over time, as things have healed, of when like, oh, you know, I could do a little bit of that. I don’t have to finish it. Huh. That would be okay. So I’ve gotten better at living in that middle space. And I could give tons of examples but that would basically take over this entire workshop. That might be another workshop at some point. Okay, moving on.
23:32
I’ve also learned how to soothe my nervous system, how to soothe my anxieties, and the old, wounded parts of myself when they come up when I do have those trauma reactions. I’m more aware of them. I’m aware of what’s going on. And I have skills and tools now to be able to deal with it better than I ever have in my life. Here’s another big one that I learned is that just because something goes wrong between me and someone else, it isn’t always my fault. I got so many complaints as I was growing up, and even as an adult of, Why are you saying things like that? You’re being accusing, you’re being too direct, you’re being rude, you’re saying inappropriate things. It was always blamed on me, it was always labeled as my fault when anything went wrong. And so I learned to internalize that and blame myself whenever anything went wrong between me and someone else, it was of course because I didn’t say it right. It was because I made some mistake, because I whatever. But you know what? A lot of people are not good at communication, not just Autistics. A lot of allistics are really bad at communication. And sometimes it’s them. It’s not always me. When it is me, I will own that absolutely. And I will apologize and try and make it right. But it’s not always me. That was a huge relief when I figured that out.
25:07
And along those lines, I’ve learned that healthy communication is a more useful goal than trying to emulate neurotypical communications or neurotypical social skills. So now what I strive for is not to mask better, it’s not to try and be more neurotypical, it’s not to try and say things in the way that neurotypicals would say it because that’s the right way or the polite way, or the only way to be considerate. No, there’s lots of ways to be polite, and considerate and kind. It doesn’t have to be the way that they do it, as long as it is actually kind. So I’m striving more now for healthy communication, not neurotypical communication. And the last thing I’m going to point out here is that this was a big surprise to me when I started having positive relationships with certain people in my life. I mean, I’ve always had good relationships with certain people. I’ve not always but I’ve often had a friend in my life as growing up, and had good relationships with my parents. Pretty well. Much, much better now that I figured out all this stuff. But it was still kind of a struggle, it was still an energy drain. But I’ve learned that as I’ve healed more and more, and the people around me are healing more and more, that it can feel good too, like something I want more of, and that it’s worth putting in that work to make relationships work well, because it just feels good. And that yeah I can have positive mutually supportive relationships. And it doesn’t have to be with lots of people. It can just be with a few people, and that’s wonderful. Okay, so that’s the personal stuff that I wanted to share.
27:25
Okay, so let’s talk about how this applies to a wider audience. And I fully admit up front that this five stage process that I’m outlining here, this is my theory. I don’t know if this is some sort of absolute truth. This doesn’t qualify as anything like that. And I haven’t heard this from anyone else. This is what I’ve kind of created. And I want to just briefly describe where I’m getting those from. This isn’t just something that I made up one day. This is basically the conglomeration, my brain is very pattern oriented. I try to make sense out of things. I just naturally take large volumes of information, sometimes from very different systems and make the connections. The Autistic brain is really good at this. And what I’ve noticed is these particular patterns, and where I’m getting this from is I’ve been coaching for about four and a half years. I’ve coached well over 1000 hours, over 100 autistic adults, many of them ongoing for months to years. And I work with over 450 autistic teens, many of them recently identified in their mid to late teens, so definitely past the childhood stage. And I’ve been advocating for neurodiversity acceptance ever since I figured out that I was autistic. So this has been close to a decade now. And I’ve talked with 1000s of Autistics online, or communicated with because it’s often in writing.
29:15
So I’ve heard their stories, and seen so many patterns, so many commonalities, people in different stages of it and people reflecting on previous stages that they’ve been through. So that’s where I’m getting this from. Just saying that, because I like to know that people aren’t making things up out of the blue. This is just one of my personal things. I want to know where you got this info from. This is where I’m getting it from. And this is my brain is just making sense of all of this stuff that I’ve been collecting, all this data points that I’ve been collecting for close to a decade since 2015. All right.
29:57
So here’s the five stages. The first stage is questioning and identification. Second one is reflecting on your life. The third one is unmasking. The fourth is building your better life. And the fifth one is contagious healing. So, for each of these, I point out several different aspects. I’m gonna look at how it starts, like, what’s something reliable that you can tell that you’re starting into this stage? What’s the key question? There’s usually one or two questions that are kind of guiding questions throughout this stage of your life, this stage of your personal growth. You can think about it intentionally. But this is kind of the question or questions that need to be answered. I also describe a key metaphor. Metaphors that I’ve used over and over when talking with clients to describe what’s going on at this point. And I think that, for some people, that metaphor really helps. For some people, they don’t really care about metaphors, so you can ignore that if you’re not the metaphor kind of person.
31:12
And then I want to get into the heart of it, like what does it look like to be in this stage? What are the things that you are wrestling with, the things that you’re figuring out, the things that are struggles, the things that are wins, kind of what it looks like. And then a couple of things that need to resolve before you can move on to the next stage. And the few blocks that can prevent you from moving on. A couple of things to look out for. These are like danger signs. And then a couple of key things that people generally learn in this stage. And then because everyone’s always asking me, How long is this going to last, I’m going to give a timeframe estimate. I don’t want to make a big caveat on that. But these are very, very loose estimates. Everyone’s journey is different. In fact, that leads me into a few other caveats.
32:05
These stages are not binaries. They’re not either I’m in this stage, or I’m in that stage. Sometimes they’re going to overlap, especially the first three tend to overlap more, the edges between them tend to be pretty fuzzy. And the last two, the edges between those two tend to be pretty fuzzy. And certain aspects of that might overlap more than others, even if you’ve kind of moved on from most of it. But they’re like this one area that is still kind of trailing from the last one. Or you moved into the next one in this one area, but not fully in other areas. That’s just normal.
32:44
Also, these stages are not necessarily linear. Certain themes are going to spiral back around, over and over like sensory stuff and communication stuff, you’re going to notice those are going to come up over and over, sometimes in different ways though. Each time you encounter it in a new phase, it’s going to have a new aspect to it. Some of them are going to come back briefly. Sometimes they’re going to come back for a while. It’s okay. And again, my timeframe estimates are very loose. They’re based on common reports, to some extent my own experience. But they are very, very loose. Especially if you get blocked, it can last a whole lot longer. So I’m curious as we go through these, if you can identify what stage that you’re in, more or less, mostly.
33:34
Alright, one last note before we get into them. I don’t think that I’m going to be covering anything here that would generally be considered triggering, or that specifically deserves a content warning. But I do recognize that sometimes seeing a mirror held up to our lives can be confronting, and that can be kind of intense. So if feelings get too intense at any point, please take care of yourself, take care of your mental health. This isn’t worth it. You can leave at any time, you can give me the finger, do whatever you need to do. It’s alright. If you want to come back to it later, there will be a recording. If you don’t want to, it’s alright. This is not the end of life if you don’t hear these particular bits of info. And if you disagree with them, it’s okay too.
34:25
Okay, so here’s stage one. Questioning and identification. So, this is where it all starts. And it’s going to start when maybe you stumble across some info about autism and it sounds a little too familiar. Or someone suggests that you might be autistic and you’re like, what, huh? Or if you’re just searching for any explanation, maybe an explanation for burnout, maybe an explanation for why relationships keep burning, maybe an explanation for sensory stuff, like you figured out some sensory things, but it doesn’t seem to explain enough. Or maybe you got diagnosed as ADHD, but it does explain some things, but it’s not quite enough, it doesn’t explain all of the things that you’re looking for. So you figure, you come across some info at some point, and you start wondering, you start questioning. Maybe this fits? Is this something that I need to look at more? And the key question in this stage is very simply, am I autistic? Does this actually fit me? And if so, what does that mean for me? Or what might that mean for me?
35:55
So the metaphor, for this one I actually have two. And the metaphor depends on the orientation that you take towards this stage. If you are in the doubt loop, and we’ll talk about that more in a second, this stage is a lot like playing Whack a Mole. It’s like, one doubt comes up, you hit it, another doubt comes up, you hit it, another doubt comes up, you hit it, this one comes back up, you hit it. And every time you quell one doubt another one comes up, from every corner, you just can’t get away from the doubts. You can’t get away from the “but what if, but what if? Maybe it’s not?”
36:39
If your orientation towards this stage is more like feeling, ‘Well, okay, so what does that mean for my life?’ It might feel a lot like being lost in the woods. You don’t know what’s happening, or where you are anymore. Or, like what the world is or, Okay, so maybe I’m autistic – what does that mean for my life? Am I supposed to do this? Am I supposed to do that? I have no idea where to go with this next. It can feel very lost.
37:10
So what this stage can look like. It looks like a lot of researching, looking up things, reflecting on things, reading about other people’s experiences, reading books, reading articles, watching videos, talking to people, questioning what you’ve read, what you’ve heard, doubting. Finding other people in the Autistic community, talking to them, talking about their experiences, talking to friends. I was talking to my mom a lot of, what was I like as a child? What about this time? I remember this happening. Tell me more about this? Do you think I am? You can be talking to friends like, Hey, do you think this fits? What are their reactions to this idea? So there’s a lot of that.
38:01
Another big thing that happens in this is challenging our own preconceived notions about what autism is. For most of us, most of our understanding, before we really start looking into this more deeply, our understanding of autism is based upon a lot of popularized stereotypes and mass media representations. A lot of which are inaccurate, or at least inadequate. They do not cover the majority of the autistic experiences, a fairly narrow view of what autism looks like. And it’s often a fairly depressing view of what autism looks like because it’s often viewed from the outside, and just focusing on the struggles and on the differences, as if they weren’t were horrible bad things. And it doesn’t have to be. But you have to wrestle with that. You have to wrestle with the stereotypes, wrestle with the word, wrestle with calling yourself autistic, an Aspie, an autie. Can you figure out any of those? What fits? What can you live with?Yeah, there’s a lot of wrestling in there.
39:28
And there’s also another aspect of this stage is questioning or deciding whether or not to pursue a formal diagnosis. Some people do, some people don’t. For some people, it’s not necessary for any practical use. I knew for myself, I had quit my primary job. I was working part time and I was about to quit that job at the end of the next school year. And I wasn’t going to get any practical benefit from it, but I just needed the external verification. I needed someone else who had no connection to me and no reason to try and make me feel better, to say yes, I think this is true. However, that didn’t actually call it out. I still had lots of doubts. So I don’t know whether that was useful or not but I have a piece of paper now. For some people, a formal diagnosis can help with getting accommodations at work or at school. It can help with getting other people to stop their doubts, or at least stop bugging you about it, or stop telling you that you’re wrong. For a lot of us, self-identification is going to be good enough. But that’s really going to depend on your situation. So that’s something that you have to figure out for yourself at the stage.
40:54
So what this stage needs in order to be able to resolve and move on to the next stage is identifying enough with the autistic experience that it feels right to you. Yes, this feels like me. I say identifying enough because the autistic experience is not one thing. All of us have very different ranges of experiences. Just because a lot of autistics have food sensitivities, doesn’t mean that everyone does. Some people don’t at all. Just because some people have problems with sensory stuff doesn’t mean that everyone does. Some people don’t at all. Just because some people this and that, like, no one’s gonna have all of it, and no one’s gonna identify with all of it. So it’s not like you check all the boxes and if you don’t check all the boxes, it’s not true for you. It doesn’t work that way. This is one of those things where it’s not all or nothing. But it has to feel enough, it has to be close enough, like enough of other people’s reports feel like they jive with your experience, that you can be able to say I am autistic.
42:19
Alright, so potential blocks that can keep you stuck in this stage. It might be getting stuck in those doubt loops, where you just can’t stop doubting, like until I have absolute 100% unequivocal proof, I will never believe. Oh, you’re not going to be able to get that, I’m sorry. It doesn’t work that way. So if you get stuck in that. Or getting stuck in the autism stigma, like, Oh, I’m not like those kids. So therefore, No, I can’t apply that label to me. So if you get stuck in that stigma that can get you stuck in this phase and not being able to claim the identity. Or getting stuck in the diagnosis dilemma – should I get a diagnosis? Shouldn’t I get a diagnosis? Like, if you need to have that in order to be able to say, yes, for sure I am autistic, but you can’t actually get the diagnosis for practical reasons, for monetary reasons, you can’t find a diagnostician who takes adults and has any clue what they’re talking about. For any number of reasons, you might not have access to that. Or one of the other things that can block you and get stuck in this is you get a diagnosis, but the answer is no. But you still think that it should be yes. But you have this formal thing saying no, you’re not autistic. And if you get stuck in that, that can be a block.
44:00
Without getting into this too much, there’s a lot of people who they simply don’t know what they’re talking about. They don’t know the adult autistic, high-masking presentation of autism, or the female presentation of autism, or however you want to describe it, there’s lots of different ways to describe it. They’re stuck in a very, very narrow version of what autism looks like, and if you don’t fit that, they’re gonna say no. If you can hold a conversation, some people will say no, your can’t be autistic. Well, that’s just not true. Or one other potential block is if it simply doesn’t adequately explain enough things. Like maybe this is not actually the answer. Maybe it explained a few things, but it’s not quite right.
44:56
All right. Things to look out for in this stage are doubts. The doubts. Do I deserve the autism label? Am I just a little strange? Am I making it up? Am I blowing things out of proportion? Am I overly focusing on a few things and ignoring all of the other things that would say otherwise? Yeah, just those are the doubts that we can get stuck in. I would suggest looking out for other people’s opinions becoming too strong of an influence. Not saying don’t listen to other people, it’s worth it. But be your own judge in the end. Does it feel right to you?
45:38
Okay, the key things that people tend to learn in this are understanding yourself better and trusting that you know yourself well enough to be able to claim this identity. Believing that you can figure out more through this lens, because of this new identity. And this stage generally takes anywhere from a few days to a few months. But if you get blocked, then it can take years, you can get stuck in this for extended periods of time. And I’ve talked to a number of people who have been stuck in this doubt loop for years. And some people are like, I figured this out 10 days ago, I’m 100% sure. Moving on. For me, I figured it out pretty solidly within a couple of days. But then the doubts came in. It took me a few months to really get through it. Okay.
46:41
So that’s the first stage, and then we’re going to move into the life reflection. And these tend to bleed into each other fairly smoothly. Like I said, they’re fairly fuzzy borders between these. So once you start questioning, am I autistic? And what does this mean for me? I mean, you’re more or less like, Yeah, I think I am, you’re going to start looking back at your life and questioning everything through this new lens. So it starts when you’re able to call yourself autistic with reasonable certainty, whichever wording you use, if you want to use Aspie, that’s your choice, if you want to use autie, if you want to say I’m on the spectrum, whatever version works in your head. But you have to be able to claim the identity. And then the questions that you’re confronting in this stage is what does this mean for me? And how do I understand myself now?
47:46
The metaphor that I describe about this stage is it’s like cleaning out the closet. So imagining how you have this closet, it’s a mess. There’s lots and lots of stuff crammed in there, and you want to clean out the closet. So what do you do? You take out all of the stuff first. You take everything out, you put it on the floor, you put it on the bed, and it looks like a mess. Your room turns into this disaster zone. And then you start sorting through stuff. Is this something that I want to keep? Is this something that I want to throw away? Is this something I want to donate? Like, what do I do with this? Does this have another place? And you slowly start sorting stuff out, and you put some stuff back in the closet and it’s a lot neater, and you get rid of some stuff. And you donate some stuff, and you find other places for some stuff in different parts of the house. And slowly that big mess in your room starts getting organized and things get put back away. And this is what this life reflection is like. It’s like you take out all of the stuff from your past mentally, like you’re rehearsing and going through all of the things in your life and going, Oh, that’s why that happened. Okay. I don’t have to feel shame about that anymore. This is just because of this. Oh, that’s why they treated me like that. That’s their trauma issues. It wasn’t necessarily me. Oh, so I don’t have to feel ashamed about that anymore. Oh, this is why this happened. And it’s because of this and I don’t have to bear the guilt of that anymore. Oh, this is why I didn’t understand that, I didn’t get what was going on here. Interesting, huh. And you kind of sort through all of the stuff in your life, and it cleans it up. And a lot of the trash gets taken out, a lot of the guilt and the shame that isn’t yours to bear can go away. And other things make more sense. We’ll get into this more but like, so this is why I’m talking about it as cleaning out the closet, and eventually you clean out enough that you can like sleep on the bed again, and you can walk around on the floor. And you can do new things in that room because the mess is taken away.
50:16
Alright, so what this looks like is looking back through your life, like I was just saying, understanding what happened in new ways. It also prompts a lot of grieving, grieving the things that happened. And some things that didn’t happen, like the support that you didn’t get, the understanding or acceptance that you didn’t get. It can also bring up a lot of anger. When I was going through this, I discovered that I had a lot of anger that I didn’t know existed. And I went through what I call my angry phase. And my therapist just reminded me, it’s okay, this is a phase. But I was still very angry during it. And that was okay. But she knew that it wasn’t gonna last. This isn’t my new normal, it was going to process and as it processed, it would fade. But I needed the processing, I needed to be angry at certain people, at family, at friends, at teachers at school, at the system, at the world, at the way things are, why don’t people understand what’s going on? Why can’t people be more accepting? What is so hard about just accepting people for who they are? Like, why can’t you just accept differences? All of that. And some of that is just anger. And some of that is anger at specific things, and some of that, etc, etc. But as I processed it, it transformed. There is still some anger. But the anger that’s left is the kind of just anger that motivates me to make a difference in the world. It’s not just the kind of anger that makes me flare up at every little thing and get irritated and pissy at people for reasons that don’t actually have anything to do with what’s going on in the moment.
52:15
Okay, another thing that this stage looks like is you start to become more aware of all of the little and big ways that sensory experiences might have been blocked or numbed or dissociated or distracted from. And you were doing all of those things, because those were the only tools that you had in order to be able to reduce the intensity to something that was more bearable. And that makes complete sense. But as you start noticing it, the intensity starts coming back. And sometimes that can be a lot to deal with. It can be overwhelming. It can make things frustrating. Sometimes, just like everything feels more frustrating. That’s one of the common things that I hear over and over from people in this stage is like, everything’s just more frustrating. And perhaps a little tinge of regret that they figured out the autism thing because everything feels worse, actually. People say that it’s supposed to be so much better once you figure this out, but actually just everything feels worse.
53:19
It’s okay. It will be okay. It’s a phase. As you figure out your sensory stuff more and more, you’re going to get more tools of how to deal with that stuff in ways that actually work rather than just numbing or repressing or dissociating or distracting. You’re gonna get better tools. Because you weren’t taught how to deal with your sensory stuff early on in your life, you were just punished for having intense experiences, or you were complained at or you were just told to deal with it, get over it, it’s not a big deal, etc, etc. So the only thing that you could do, of course. A little kid doesn’t have useful ways of dealing with that, so they just deal with it in the only way that’s possible that’s available to them. And if you don’t develop new skills later on, and most of us don’t until you intentionally try, it just continues going like that. So, things can feel worse, but my note of hope is that as you gain new skills, it will calm down, it will get better, I promise.
54:40
Okay, so one couple last things, what it looks like. Sometimes the stage can feel like floundering, or it can especially it’ll look from the outside like you’re floundering or like you’re unproductive, you’re not doing anything, but you are doing a lot. You’re doing a lot inside. You’re processing the things that you need to face and the growth is happening inside. It might not look like fixing your life, it might not look like making everything better. But this is a really necessary part of it. So what I describe is if you take a glass of water. Just take a glass, fill up part-way with water and put it on the counter put on the shelf, don’t touch it for a while. You can stare at that thing all day long and you don’t see anything happening. But you come back to it the next day, a couple days later, the water’s gone. Evaporation is proof that sometimes you can see nothing happening, but it is happening. So what I would do when I was in this stage is I would put a glass of water on my shelf. And I would use that to remind myself that even though I don’t see anything happening, transformation is occurring. That helped me through a lot of the times when it looked like I was just complaining, like I was just rehashing old stuff endlessly, like I was just floundering or wallowing or, When am I going to finally get a new job, or when am I finally going to figure out what I want to do with my life. That wasn’t the stage that I was in, that’s coming next. But I needed to go through this, I needed to figure out this stuff first, in order for that to be able to happen.
56:36
Another thing that this can look like is, it can look like a lot of confusion about what’s going on in your life and what comes next. It can be a very confusing time, because you figured out enough, and you’ve seen enough that you have some sort of cautious optimism for the future. But you’re not actually sure how to make that happen yet. So it’s this weird transition phase where you know that you can make things better, but it’s not happening yet. And that can sometimes be frustrating, too. So what it takes for this to actually move on to the place where you can do things about it is, you need to face the anger and the grief, these are important. And it also takes forgiving yourself. Letting go of the shame and the blame and the guilt for not being otherwise, for not meeting other people’s expectations, for not being someone else, or not being the child that they wanted, or whatever it is for your particular situation. I want to be very clear here. I’m not saying you have to let go of all of the bad things that were done to you. I’m saying you need to let go of the shame and the blame for it. That’s not yours to bear. The things that happen to you are theirs to bear. You have to deal with the results of it. That’s yours. But the shame can be processed and healed. And that can fade.
58:18
It also takes healing enough of those old identity wounds that your core self is accessible. And I’m using self here in the IFS (Internal Family Systems) term of your truest nature. Other people call it your true nature, your core self, depending on which system you’re referring to. Anyway, these old identity wounds of why are you x? Why can’t you just be normal, all of those things, those need to heal enough that you can get at some aspect of your truest self. It also takes facing the truths that systems have been training you away from the truth that it’s okay to be different, that it’s okay to think the way that you do. It’s less convenient for systems when people are different because they don’t fit into the neat boxes. The bureaucracy doesn’t know how to deal with that. School systems don’t know how to deal with that. So they basically just complain about us and call us wrong for being different. But there’s nothing wrong with it. It just doesn’t fit their expectations. It doesn’t fit their model. It doesn’t fit their bureaucratic checkboxes and whatnot, but there’s nothing wrong with it. I could get into that so much more but I’m not going to right now.
59:49
Okay, last thing I’m going to point out here, you need to get to a point where you’ve hit the wall so many times trying to do the neurotypical thing, or the standard thing, or the societally approved thing in life, that you no longer can not do something different. And this is the point at which real change becomes not only possible but inevitable. If you can no longer not do something different, you will do something different. You will try it, you will figure something out.
1:00:26
Okay, so what’s going to block you from moving on from this stage? One of the common things is trying to skip the whole feeling stuff and going straight to the practical later stages. Trying to fix your life without dealing with the anger, with the grief, with all of the other big emotions. Another potential block is alexithymia. I’m going to tread lightly here, because this is one of those things, I mentioned before that when I first figured out that I’m autistic, it was like, oh, that’s just the way I am. And alexithymia was one of those things. I was actually diagnosed alexathymic. What that means is you basically don’t have access to your emotions. You can’t tell what you’re feeling. But as I healed a lot of those identity wounds, as I figured out more sensory stuff, as I started integrating my sensory experiences, as I started understanding what I need, as I started getting more in touch with my interoception, with my internal awareness of what’s going on in my body, I was able to, a) get in touch with what was going on in my body, and it started making those connections that hadn’t been around for most of my life. So alexithymia isn’t something that you either are or aren’t. It’s a defense mechanism. It’s like, hey, all of these feeling things, they hurt too much. And I have nothing to do with them. They’re not useful in any way. They’re just painful. So I’m going to block it out. And you literally stop feeling stuff.
1:02:13
I would have a very strong emotional reaction. And my therapist would ask me to put my hand on my heart and my heart would be at a normal heart rate. I wouldn’t be feeling things even though I was clearly angry because I wasn’t yelling at her about stuff. Not like at her, but just in her office at things from my past. But I couldn’t access it. But I did start gradually over time being able to access that. And it will be a slow thing. It takes probably years. You might be able to start it within months. But it will take years to really get fully accessed. But what a potential block is just saying, Oh, well I’m alexathymic. That’s not going to happen for me. So not even trying, not starting. Okay.
1:03:09
Another potential block is not processing or healing the old identity wounds. And I get it. This is basically having to face stuff that there’s really good reasons why we haven’t wanted to face them. But it’s not going to get better until you start processing and healing some of that stuff. Another potential block is thinking that this is the whole journey. Oh, I’ve figured it out. I’ve processed my life. So this is it, right? So why isn’t it all better? It takes a little more work. That’s not true. It takes a lot more work. This is just the beginning of the journey.
1:03:10
Okay, things to look out for is getting stuck in those old stories that you were told, but that are not true about who you are, or what is your fault and why things happened the way they did. Because we have such different experiences than what is expected, a lot of us have been told things that were our fault, or that things were ours to bear that aren’t. We’ve been told a lot of things that aren’t true. Sometimes that was intentional. Sometimes it was mean, cruel, gaslighting. Sometimes it was just other people not understanding. It might have been from parents who had learned to mask heavily themselves and they were just trying to teach their kids the best that they knew. I got a lot of that from my dad. We understand later that he’s autistic. He’s passed away a long time ago, but he was very clearly autistic. But he learned to mask very heavily and he taught me a lot of that masking behavior because that was just what he had learned of how to get by in the world. So, but that’s not the only way to get by in the world. That’s not the only way that that you can make it. And those stories are not true. And it takes sorting out what aspect of it is true, from what aspect is not, because usually they have just enough truth that it fools us. There’s just enough there that we think it’s true, that it believes that it feels true. But it’s not, or not entirely. That’s a lot of what I do with clients, by the way. This is my wheelhouse. I love this part, figuring out what’s true and what’s not true, and freeing up that.
1:05:45
Okay, so the key things that people learn in this stage is understanding yourself better. Understanding other people in your life, maybe parents, was like, oh, that’s why they were like that. That’s why this happened. Understanding society better. I mean, I get the systematic oppression at this point, and I don’t agree with it, I don’t like it. But I understand it better. And to some extent, that kind of helps. It’s like, oh, that’s why this was like this? Huh. Well, that still sucks. And I still want to change it. But I understand why. It’s not just so this amorphous thing that I can’t get my head around. Okay, also understanding why events happened the way they did, and starting to notice sensory input and emotions might even be useful sources of information. And beginning to build that sort of internal awareness. It doesn’t have to be clear at this point, it doesn’t have to be much at this point. We’re just starting. And this phase, this stage generally takes at least six months, it could take a year or more. If it gets blocked, if you get stuck in this, it could take many years. Okay, so that’s what I got for stage two.
1:07:13
All right, I think I need to pick up the pace a bit, just looking at the time. Alright, stage three, this is our unmasking stage. So once you’ve gotten enough of your, oh, that’s why, all of this stuff. At some point, the mask is going to start chafing, you’re going to feel cramped, like self wants freedom, like you want to be just more yourself. And so the key question that I need to wrestle with in this stage is, what’s me and what’s the mask? And I describe the metaphor here as the elevator. This one isn’t from me, I’ve heard this from a number of other people around other areas of personal growth. I don’t know who originated it, so I don’t know who to give credit to. But I love it and it fits. So the elevator is basically when you start this whole autism journey, you’re at the ground floor in the elevator and you’ve got a whole bunch of people around you who are with you in the elevator, all the people in your life. Your friends, your family, your coworkers, your boss, all the people that you deal with on a regular basis. And then you start making this journey and it’s like you’re going to go up but most of those people are not going to take the journey with you. A lot of those people are going to be getting off the elevator, and you’re going to start going up. And when you’re in between floors, it can feel very lonely. There might be one or two people in the elevator with you who are making the journey with you. There might be no one in the elevator. But in this transition phase, it can feel like you’re losing relationships. What’s happening? People aren’t accepting me. The people in my life, they don’t get it. I’m all alone.
1:09:01
And at some point, if you’re willing to keep going, if you’re willing to keep going up to the next floor, you’re going to reach that next floor and the doors are going to open and it’s gonna be a whole new crowd of people there and it’s like, you’re my people, where have you been my whole life? And there’ll be new relationships and new people coming into your life. But when you’re in that inbetween stage you can’t see that yet because the doors are closed, you’re not there yet. And it can feel very, very scary. And a lot of people often are very hesitant to lose any potential relationships because they don’t see that there’s a possibility, or they hear people say that that happens but they don’t really believe it yet. Until you get to that next floor and you open the doors and and you start seeing people who fit you better who get you and and it’s wonderful. Okay, so what this unmasking stage looks like. It’s a lot of noticing what isn’t working for you, what’s not happening in your life, like how this sensory thing, this way that you do things, this routine, this way that you’re interacting with someone, this person is always doing this type of thing, you’re just noticing all the things that don’t work for you. And you haven’t yet kind of figured out the solutions to it. So it can again feel very frustrating, feel like, all I’m finding are all the bad things.
1:10:35
The sensory intensity may increase as your internal awareness starts to grow more, but your useful competency yet hasn’t yet caught up to it. So it can feel overwhelming, it can feel intense yet, for a time. And you will start exploring sensory friendlier options. You’ll start trying to figure out how to deal with that sensory intensity, how to make it better. And you’ll find one little thing, and you’ll try this other thing, and that doesn’t work. But then you’ll try something else, and it will work and you do a lot of experimenting. It’s a lot of trial and error. Some things will work, some things won’t. But you’re figuring out what works. And you’re also figuring out how to figure out what works. You’re figuring out how to explore your sensory stuff. You’ll also start to find other people in the autism community and start building culture, building your tribe.
1:10:49
And so this is also the stage where relationships can be kind of rocky for a while, while you’re experimenting with new communication patterns, with authenticity, with being more autistically direct, but in ways that might work better, but not always. But there’s also with the old people who aren’t making the journey with you. So relationships can be rocky, they can have lots of ups and downs. And it can feel like just like people aren’t letting me be who I need to be. They’re not letting me have any kind of growth, they’re not letting me be authentic. That’s just a part of this. It’s a lot of experimenting. It also is a stage where you start asking for accommodations at work or making your own accommodations. And that can be an experimenting phase two, like what accommodations do I need? What is available? What are the options? I don’t know. And you ask people like, what are options? And you try to figure out like, what are the things that you’re having trouble with that you might want accommodations for?
1:12:38
And one of the other key questions they that I love with this is, what about it isn’t working for me? What about this, not just this is overwhelming, but what about it is overwhelming? Not just this doesn’t work. Okay, great. So what about it doesn’t work? You start narrowing down how to figure it out. Because it’s usually not everything about it that doesn’t work. It’s like something or maybe a couple of things. But other things are fine. But if you can narrow it down, if you can figure out like what it is, then you can do something about that, then it’s usually a lot easier to come up with a solution when you can really get clear on what isn’t working.
1:13:24
So in the stage, you’re also healing more of those old identity wounds. And as you do that, you’re growing your own self acceptance and self compassion of it’s okay to be me, it’s okay to be autistic. And growing the self compassion of, Oh, that was hard for me. Not, I’m a terrible person. Not, I can’t function but this was really actually a hard thing. And I don’t have a lot of energy to give right now. So it’s okay for me to take some rest. It’s okay for me to find another way. It’s okay for me to experiment with something. It’s okay for me to let myself off the hook for having a bad reaction to that thing. That’s the self compassion growing. And it also looks like that self compassion, that self acceptance leads very naturally to accepting other people’s differences. Some people struggle with this more and some people much, much less. But it always comes from accepting yourself first. And if you’ve been struggling with burnout, burnout recovery starts to have more noticeable effects as this unmasking phase progresses, and some of those skill loss will start reversing as your nervous system destresses enough for long enough, some of that comes back.
1:15:02
Okay, so what the stage needs in order to resolve and to move on, it takes letting go those old identities as broken, or non human, or less than. And now what I’ve noticed is that each person has two or three things that is unique to them that needs to heal or resolve or free up. And when that happens, it starts this upward spiraling of positive changes, that leads you into the next phase of actually building your better life. But, like, each person needs two or three key things to heal, to resolve to free up. And that leads to extraordinary changes very, very quickly. Another thing I mentioned before the anger, one of the things that my therapist told me, and I will remember this verbatim for the rest of my life, she said, Turn your anger into advocacy, and ask for what you need. So this is from the just anger of this isn’t right for me. So there’s two different kinds of anger. There’s the just anger and the anger at things that have happened in the past, but the just anger about things that are happening now. Okay, let me slightly rephrase. I’m not saying that the anger about the past isn’t just, it usually is. But it’s in the past, like you can’t do anything about it right now. So the just anger about things that you can do something about, this is a present current situation. Use that anger. Use it to turn it into advocacy, ask for what you need, make the situation better, do what you can to fix things. And as you start to do that, you’re starting to move into that phase of creating new change, of building a better life.
1:16:59
Okay, and the last thing I want to point out is also in order to resolve and move on, you need to be able to usefully connect thoughts, emotions, and physical sensations as useful info, as guides to what you need and like and want, as opposed to what’s been prescribed for you. So there’s lots of things in life that we’re told that we’re supposed to want, that we’re supposed to like, that we’re supposed to be okay with, but you don’t actually. But when you can tell inside that someone offers you something, and you have a physical reaction to it, or an emotional reaction to it, or a thought reaction to it, if you can notice that and say, Oh, that’s me not wanting that thing. That’s how you figure out what you need and what you want, and what you want in your life and how, and you have to be able to do that, at least to some extent in order to be able to create what you want in your life because otherwise you don’t know what you want. It’s just ideas until you can get at least some of that connection going.
1:18:11
Okay, so potential blocks to moving on from this phase. I’m not confronting or dealing with the things that originally taught you to mask or to people please or to fawn. There’s reasons for those behaviors and masking. Again, it’s not a type of autism, it is an activity, it’s a trauma response, it’s a reaction. Just like people-pleasing, just like fawning are. They’re trying to keep us safe. But we need to face what started that in the first place in order to be able to move on from it. For some of us, that’s going to be very specific facing the thing that started it. For some of us just more of a general, I kind of got this impression a lot in my life is enough. But to some extent or other you need to be able to deal with that, and to process it and heal from it. Another potential block is the fear of this sensory intensity and assuming that it’s always going to be overwhelming. Or a fear that relationships will always be this hard and that everyone will leave you and that you’ll be lonely forever. Remember, in the elevator when you’re in between the floors of the building, it feels very lonely. But that’s just because you’re on the journey. You just haven’t gotten to the next floor yet.
1:19:47
And something to look out for in this stage is changed back attacks. This is a term coined by Martha Beck and I highly recommend looking up her explanation of it. I’m not going to give a very full one but basically this is when you start to change and people in your life do things or say things that try and get you to change back, because they don’t like the change. And often, it’s not necessarily they don’t like the actual change that you’re doing but it’s more that they don’t like change. They knew what to expect from you and they don’t want you to change that, because then they have to adjust their lives. And that takes energy. And they don’t want to deal with that. So they’re going to do things or say things that are going to dissuade you, prompt you, push you, guilt you into trying to go back to the way you were. Just as an example, from Martha Beck, if you’re on a diet and someone brings home cheeseburgers, because “I know you love them so much”, that kind of thing.
1:20:52
Okay, so key things that you learn in this phase are building healthier communication skills. Again, not neurotypical communication skills, healthier communication skills, which can be very much more direct autistic communication styles. This is another thing that I I love working on with people. Another key thing that you learn is how to deal with emotions in healthier ways, not just “deal with it”, that’s not useful. But how do you deal with it? And learning how to deal with physical sensations in more integrated ways so that it’s not overwhelming. And how long this takes? Generally two to four years at least, at least as a stage. But unmasking as an activity is a lifelong process. I’m definitely still doing it, I still find new ways. It’s like oh, I didn’t realize that was a masking thing. Huh. Okay, I guess I don’t need to do that anymore. I love it when that happens. And now I’ve done this enough times that it’s very easy for me, once I’ve noticed that that’s happened, I can let it go very, very quickly and easily. The noticing sometimes takes a while.
1:22:03
Okay, so at some point, this unmasking is going to have happened and enough that you’re naturally going to be starting to want to build your better life. Okay, I’m realizing that I’m at the just about approaching the hour and a half mark. If you need to go, please take care of yourself. I’m going to continue this. If you’d like to stay with me, you’re welcome to. There’ll be a recording, also.
1:22:32
Okay, so stage four, building your better life. This is when you start making the bigger changes that make noticeable shifts. And it starts when something inside shifts, some sort of fundamental shift happens that feels like freedom, that you start naturally making other changes. And that leads to more changes and more changes and it starts getting easier. And you want to do it more and you get the momentum going. And then you’re definitely in this stage. And the key question here is you can ask, How could this be better? Everything that you’re doing is like, I’m doing this activity – how could it be better? I’m making this project at work – how could it be better? Not necessarily the project, but my experience of the project? How can I make my room better? How can I make it nicer? How can I make this relationship better? Everything, it’s just how can it be better?
1:23:28
So the metaphor here that I describe, it’s like creating your path in the woods. So you’ve been lost in the woods for a while. And you’re starting to actually not just find a path, because there isn’t like a prefab path out there. There’s not some model for what a good autistic life looks like yet. I hope that we’ll have many more examples of that in the future. But there isn’t something that we can just look to and say, Oh, that’s what you’re supposed to be doing. That’s what a good autistic life looks like. No, you have to create it at this point. I’m sorry, it’s more work. That sucks. And that’s just what it is at this point. So you start creating your path through the woods to your better place.
1:24:20
Okay, so what it looks like. When someone shows up to a coaching session with me and they have a new haircut, or they’re telling me about how they just rearranged their room, or they’re having a new wardrobe. I’m like, okay, they’re in this stage now. That’s a key thing. It’s very, very common. People will start trying to make big outward changes often in hair, clothes, or rooms like rearranging your room, cleaning things out. So also in the stage, you’re going to start building routines naturally with the with flexibility to adapt them to your momentary needs. A lot of the routines that we have had in the past have been attempts to try and control unpredictable, morphing, chaos in the world. It’s like if I can just get things to be the same, if I can just get things to be predictable enough, I can be okay. And it’s very much of a bracing energy. But at this point, what starts to happen as you start to build routines or they start to emerge naturally. Where it’s like, Oh, when I do this, then this tends to follow and it’s predictable and it’s useful. But there’s flexibility in it. It’s not, I need it to be like this, otherwise not okay. It’s more of an, I’m okay with things shifting but I also have predictability in my life. And it feels very, very different.
1:26:04
Another thing it looks like it looks like creating a sensory haven, at your home or your work, and that term sensory haven, I’m adopting it from Dr. Stuart Shanker describes having a self reg haven. I loved the term, and I’m using it for a sensory haven. I’ve created my house, my room, everywhere where I live is a sensory haven for me. Only the people who live here need to care what it looks like. It doesn’t have to live up to some magazines sense or some mother in law’s sense of what’s okay. It matters who’s living here, if it feels good to me, to us. Also, in this stage, the sensory intensity starts to give way to sensory integration. And sensations start to become more useful as a source of information of what I like, what I don’t like, what’s bothering me, what could be better about this. As well, previous forms of defense or defense mechanisms, or maladaptations, like food issues or addictions or substance abuse, shutdowns, meltdowns, other things like that, those all start to fade. Because the reasons for them are healing, so they just don’t need to be there as much. It’s not going to be instant, it’s going to be gradual, but they’re going to start fading.
1:27:41
And you’ll start interacting with people in new ways, exploring healthier methods of communication, respecting your own needs more with less guilt, being able to say, this is what I want, or this is what I need, and being okay with that. And being okay with other people not being okay with it sometimes. That’s occasionally going to be the thing. It also looks like learning healthier boundaries, like how to set healthy boundaries. (Yeah, I’m not going to get into that. That’s a whole different thing on how to set boundaries.) Okay. It looks like learning how to deal with your anxiety and discomfort of new experiences, without becoming overwhelmed. Because a lot of stuff in this stage is going to be new. It’s going to be trying things for the first time, or trying things that you’ve tried before but in different ways, or trying them, but you feel different. So it’s as if it’s for the first time, even if it’s technically not. But there’s a lot of new stuff, or things that feel new, and just the anxiety of newness or the discomfort of newness starts becoming more familiar. So you can just know, okay, that’s what’s going on. I can deal with this. I’ve dealt with this many times before, I’ll be okay, I’ll get through it. What I’m experiencing is just the anxiety of the new and I can be okay with that.
1:29:23
It also is exploring what new work options or life options might look like that are less conforming to toxic productivity norms, but work better for you. And oh, how I want to get into this one a lot. It’s separating executive dysfunction myths from internalized ableism. I’ll just briefly describe to you what I mean. There’s a lot of talk in the Autistic community about executive dysfunction and how much executive dysfunction you have and what kinds etc, etc. And to some extent, sure. I’m not saying that that’s not the case, always. But sometimes what’s going on is not actually an executive dysfunction, but an expectation of doing things in a particular way that doesn’t work for your brain style. But you could definitely do it if you had a different way to do it. Or if you were allowed to experiment with different ways, or you might not do that thing, but you could do something that would be comparable in a completely different way. And it would work just fine. But we’ve had so many years and decades of being told that we’re just not good at x, that we can’t keep track of things, that time is an issue for us, that we can’t focus or hyperfocus too much, and you need to be able to break free of that. And we’ve been told these things so much that we’ve internalized them, and we’ve accepted them as well, this is just true. But it’s not always true. Some of it is those old stories that I mentioned that aren’t necessarily true, but they feel true, because we’ve been told it enough. And we think we have evidence for it, but there might be a completely different option that we just have never been presented with, that would invalidate that whole line of reasoning. Okay.
1:31:35
Also, in this stage, any physical symptoms of stress, burnout, or cognitive dissonance start to fade or fade more. Some of the health things that we’re going through are purely medical stuff. But some of it are symptoms of stress, or symptoms of burnout or symptoms of cognitive dissonance. I talk about that in a few other YouTube videos. I don’t have time to get into it here. But when we basically believe, we know in our soul that we’re one thing, but we’re being told that we’re something else, the dissonance between that can be very intense and can manifest in physical ways. It’s one of the biggest causes of burnout, in my opinion, at least autistic burnout. So as those things fade, naturally, your energy increases, and to some extent, stabilizes. It’s not going to be completely, but it will to some extent stabilize.
1:32:44
This is also a phase in which you’re learning to handle the nuance and how to navigate that ever fluctuating realm in between the all and nothing. I’ve talked about that already. Okay. It also looks like, this is where the elevator’s open, and you have new relationships coming into your life, relationships that fit you better, people that are better, that get you and you get them. And it might look very different from social expectations, and might look very close to it. But it works better. And you also start or continue the shift towards self compassion. But there’s more of it, and it’s more intense, and it starts to spread to compassion for other people, especially others who are still struggling in ways that look outwardly socially unacceptable. And for some of us, at least, this self compassion spreads to others from our past, people who might have done horrible things to us. And it’s like, oh, that’s why they were having trauma responses. It doesn’t forgive, it doesn’t excuse. But understanding can help. And if you’re wanting to make major life changes, like in your career direction, or living arrangements, or your relationships, the way forward to do that starts to become a lot clearer. And you’re going to gradually start trusting that this isn’t a fluke, or a temporary state, that this is going to be your new normal and it’s getting better. It’s gonna really happen. And you get to have this.
1:34:34
Okay, so what does this stage take to resolve and move on? There’s usually another layer of mourning for unmet needs, that grieving the past and grieving the current situation of what you don’t have and wish you did. And it takes facing more of those identity wounds that you’ve been avoiding with defense mechanisms or distractions or trauma responses, facing the things that you just really, really don’t want to face. And hence the defense mechanisms and distractions and trauma responses, those are all great ways to not have to face that. It also takes healing some of the effects of gaslighting. I’m not going to get into that too much, but the effects of gaslighting can be not trusting yourself, not believing yourself. And as you are in this phase, and the last one, you start trusting yourself more. And so some of that original gaslighting starts to heal, or at least the effects of it, the lack of trust starts to heal. And you start to get even more deeply connected to yourself, to your needs, to your emotional experiences, and trusting yourself.
1:36:01
Okay, so potential blocks for this are holding on to some piece of pain, often something that was done to me, and not being able to resolve that, or even not wanting to in some cases. And there’s no judgment in that. But it’s just not going to let you move on to the next. Also some potential block is looking to other people or to relationships for relief from loneliness. The ideal version would be bringing a whole contented self to a relationship so that you don’t need the relationship in order to be okay. But the relationship adds value and makes everything better. And one more potential block is waiting for permission from others to make changes. I see this a lot where people are like, they won’t let me do that, they won’t let me make anything better. They won’t let me make changes, they won’t let me be myself. They can’t handle it. They can’t. Those kinds of thoughts. If you’re waiting for people who aren’t accepting to accept you, yeah, it’s gonna take a long time. It might not happen.
1:37:35
Okay, so things to look out for are people telling you that you can’t do that, or you can’t be yourself, or that won’t work, or the world won’t accept you the way you are. That’s all old messaging. And it’s not true. There are people who won’t accept you but that’s not everyone. It can feel like everyone, especially when it is everyone in your life currently. But usually, it’s just a few people. Or even a couple of key people that feel like everyone. And those are often very influential people in your life. It might have been parents, it might have been siblings, it might have been a certain teacher, it might have been a boss. And especially when you get the same types of messaging from a few people, it doesn’t have to literally be everyone for it to feel like it’s everyone. But there are other people out there, people who have dealt with their own stuff and have healed and moved on and are more open and accepting. And I absolutely fully recognize that it’s not just as easy as going to find them because lots of people’s situations aren’t able to easily change. You may be dependent upon these people who are not accepting in very physical practical ways. I recognize that it’s not just, oh, we’ll just go change it. I’m just saying that what they’re saying to you is not always true.
1:39:10
Okay, so key things that you learned in this stage are trying things again for the first time. This is how I like to put it. This is how I put it for myself when I was in this stage. And it’s like, there were lots of things in my life that I tried and failed at, or tried and it went badly, or tried and just couldn’t get it to work. Like math, the violin. All sorts of things, lots of relationship stuff, lots of people things. But as things have healed and I feel like a different person, I describe it as having a second chance life and in my second chance life, I got to try those things again for the first time. It’s like I got to do it as if it were the first time because I’m different, so for this new me, it is the first time. And after I figured out that I have visual processing differences, called Erland syndrome, and I knew what I could do with it. I put a blue overlay over the math textbook, and all of a sudden, I was doing algebra. I struggled with that for years through school, it was awful. And all of a sudden, I was doing it. And I could let myself try it because I had healed enough of the things that I wanted to try it again, etc, etc, all sorts of different things in my life, people stuff especially. I was wanting to try relationships, I was wanting to try being with people again.
1:40:45
Okay, another key thing to learn is how to use emotions more skillfully as information sources about unmet needs and met needs. And I suppose I’ve added the met needs in there too, because it’s like, Hey, I have good emotions when my needs are met. This is a nice experience. And getting better at noticing the difference between the underlying need and the strategies that we use to meet those needs. Because those are not always the same thing. Sometimes we mistake the strategies for the need itself. And if you’re interested in that, I don’t have time to go into it but I would highly recommend looking at the program called the compassion course by Thom Bond. He gets into that in depth, that’s where I got this from. And it’s very well put, very well done. Anyway.
1:41:43
Another key learning is that the future doesn’t have to be the same as the past. It doesn’t. The past is still there, it’s still a part of you. But it can integrate and not have to be the same. It will influence who you are, it will. It matters. It shapes who you have become. And you can continue to shape how you have become, so that it’s not the only thing, the only influence. You can heal, you can integrate, you can process, you can create new. And this phase of building your better life seems to take somewhere around three years, at least, sometimes decades. It’s a lot of work.
1:42:35
Okay, last stage. If you’re still with me, congratulations for you. Okay, so this is contagious healing. And I made this diagram. The idea for this contagious healing where I got this from, I have to give credit to my friend, Ashley Zappy. She told me at one point, you should write a book called contagious healing about your journey. And I love that phrase. And it’s basically the idea that when one person heals themselves, they affect the people around them. And I’ve noticed certain people in my life have healed a lot, because they’ve seen the work that I’m doing for myself. I didn’t do it for them, but they’re still getting some of the benefit of that. And they’re starting to heal themselves. And each one of them, they’re a unique person who their own healing heals the people around them and it spreads. And just from one person healing themselves, 1000 others can be saved. That’s a paraphrase of, oh, I’m going to forget which saint it was. Totally gonna mess that up anyway. I’m not gonna say the wrong thing. There’s a saint who said something like that. But I like the sentiment a lot.
1:44:00
Okay, so this phase is a kind of about escaping the illusion that we’re separate beings. And how it starts is when something big enough resolves, or forgives, or frees up, there’s some sort of critical thing inside us that transforms. It prompts such deep self compassion, or such radical self acceptance, that it starts radiating out to others. And we see ourselves and we see others without judgment or shame or blame. And that’s when you start this phase, and people around you start to notice like, you just aren’t judging. And it’s a very different experience of being around other people like you can be around people and fully recognize, Yep, that is not okay behavior and you can have very firm lines on that. But you can still not judge it. You can still have a lot of compassion for the person.
1:45:13
So the key question in this phase is what is my mission now? And for me, what I came to is my mission is: how can I heal? And how can I heal and unite the things that separate and divide? And the key metaphor here is the butterfly is emerging from the chrysalis. I love the chrysalis metaphor, because it’s like the caterpillar is exactly who the caterpillar was supposed to be at that phase in their life. They weren’t an unformed butterfly, they aren’t something that they’re some less than version. They’re exactly what they’re supposed to be. And they go into this chrysalis, and they transform. And that’s a gooey, messy, long process with lots of uncertainty. Their DNA literally breaks down into goo. And they re-form and that’s a very hard thing to do. And they come out being something else, but the same DNA, it’s still who they were but they’re a different version. And it’s a beautiful version. But it’s not any more or less who they are. At every single stage in your life, you’re exactly who you’re supposed to be then, and this is the one that you see now. And I like that. And I see the beauty in that. Okay.
1:47:02
Okay, so what this stage looks like. As you’re interacting with others, you start noticing their unhealthy bait behaviors, but without judgment or condemnation, but also without being drawn into it, or as deeply affected by it. I’m not gonna say that it’s not there at all. But it fades, and it just becomes less and less. And you start to notice this happening in real time. And you also get better at separating your own reactivity from that of others. And it’s like, oh, what’s my stuff, and what’s their stuff and not taking on their stuff, as if it were your own, not feeling the need to people-please because your own trauma responses, they’re fading so much. I’m not going to describe that well. Alright, so I’m gonna move on. It’s also noticing that you can understand or at least reasonably predict where their unhealthy behavior may be coming from. And having compassion for the hardships that made them what they are, and a deep sense that there is a core self inside them that just wants to be loved, and understood, and to belong, and that they’re doing the best that they can with what they have at the time. And that’s not always a healthy thing to do. They don’t always have good tools for doing that. But that’s what they’re trying to do, even if it comes out in hurtful ways. And again, you don’t have to excuse it, you don’t have to allow it, but you can have compassion for it. And that feels very different.
1:48:46
It also looks like getting more comfortable with visibility, with being visible, if your mission involves that. For me, my mission does. For me, my mission is about reducing the stigma of autism, healing from the effects of not being accepted for who we are, and helping as many people as possible to have advantages of that. So that involves being with people, being seen. And that was a whole new experience for me. It was a gradual process, as all of this is. Also in this stage, the PDA starts to fade and the RSD starts to fade. So the persistent demand avoidance, the rejection sensitivity. Those are also trauma responses, but because the causes of those traumas have now healed enough, the effects of those traumas start to fade, and they’re just not as big of a deal. I still notice some of that in my life, both of those, but they’re very minor at this point and I’m aware of them. And I’m mostly able to just sort of notice it, be aware of it, and not necessarily have to respond to it, or at least when I choose to. But yeah, they’re like 10% now, not 100% that they used to be. And I expect that that’s going to fade even more over time.
1:50:34
It also is, in this stage, we are using that internal awareness that has been building up for a long time now. The connection between thoughts, emotions, and body sensations is being used in real time throughout the day and throughout your life, for decision making, for small and major decisions, for productivity, for rest, for communication, having real interactions between other people in real time. It’s useful, it helps to soothe your nervous system when you need that. It’s just being used on a regular basis throughout the day for all the different things that you’re doing. And it’s helpful. Okay, also in this stage, the brain and the nervous system tend to orient more towards connection, for example, connection with other people, with animals, nature, energy, the universe, God, everything, anything. The illusion of separation between things becomes more obvious as an illusion, and the connections between things become more obvious. I’ve had plenty of experiences of being able to see those connections. It’s not constant, it’s not sustained always. But I can see that that’s growing in me over time.
1:52:03
It’s also a stage where we seek joy, and your own inner sense of guidance. And those gradually replace deadlines, or external expectations, or stress, or fear, or social pressures as primary sources of motivation. You just don’t need external stuff anymore to get you to do things, because you’re just doing the things that you want to do anyway, or at least for the most part. And the stuff that you just kind of have to deal with, in order to get the things that you want, you’ve learned enough about how to make it better so that the process, the experience, is a fairly enjoyable experience. Even if you don’t really like the task itself. It’s not that big of a deal. Genuinely. Not like trying to pretend, not trying to push this on to someone else, it just genuinely is pretty okay, for the most part.
1:53:02
Okay, so there’s nothing about how to resolve this and move on because this is the last stage. No blocks, no things to look out for. A couple of last things that are like key learnings. Everyone is genuinely just doing the best that they can at the moment with what they have, and they may not have access to healthier ways to interact. And then everyone and everything are connected in a fundamental way. And how long this is, the stage is going to last a lifetime. There’s definitely other forms of personal growth, and other ways that can happen but like the autistic later-identified journey that I’m scoping out here, this is I think, the end goal. I can’t tell you if there’s another one, I’m not there yet. If there is, I’ll update this in 20 years. That’s a joke.
1:54:10
Okay, so that’s pretty much what I’ve got for you today. Just a couple of last closing thoughts, a little brief reflection here. I’m wondering if you were able to identify what stage that you were primarily in. And what surprised you in this? Any comfort or relief? Any discomfort or unease? And I’m wondering what would be useful to you in your current stage and in your situation that might involve external help. That might involve asking for something that you need. That might involve some realization that you came to like, oh, I need to do this. It might involve changing something or leaning into something more. I don’t know. Just a few ideas. What would be useful for you? And just remember, everyone’s gonna have different experiences at different times. These are only broad commonalities greatly reduced to their essence. If your situation doesn’t fit, it’s okay to adopt this, or ignore it completely if you think I’m BS.
1:55:21
Okay, so here’s my closing thought. This is something that I came to while I was living in my van. And I know that many other people throughout different philosophies, different ages, different cultures have said more or less the same thing. But this was new for me. And I love that itseems to be tapping into some truth that many other people have already found long before I did. But the way I phrased it was that “the hardest and the most fruitful lesson is to unlearn the lessons of conditioning that no longer serve me.” Okay, so this is the end of the workshop, I would appreciate some feedback. If you would be willing to give me a little feedback on the form. We’ll be putting the link to it in the chat. And I’ll also send it out by email with the recording later on. And if you’d like to contact me, here’s my contact info. I am now on Instagram. This is brand new. There’s no actual content yet but there will be soon. You can take a screenshot of that, or catch it on the recording.
1:56:39
Okay. Thank you for joining me. I hope that you got something out of this that will be useful for you. Alright, thank you very much. I hope you will have a neuro wonderful day. Take care.
