Diagnosing Late: An Autistic Awakening

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Hello everyone and welcome to Women Who Are Autistic. The podcast where being different isn't just accepted, it's celebrated. I'm Annelise your life, career, and financial coach, and I help autistic women build lives that feel aligned, meaningful, and unapologetically authentic. Each week we'll explore neurodiversity identity, work money, and the messy magic of being human. Last episode I talked about finishing the year in a way you could feel proud of, but I've been thinking a lot about how hard it is to judge past decisions, especially when you didn't yet understand yourself. And this is a story of many autistic women. We didn't know who we were working with yet, so grab your favorite sensory friendly beverage and good comfy. Let's dive in and rethink what's possible together. In today's episode, I wanna share my personal story of being diagnosed much later in life with autism. Finding out I was autistic wasn't a sudden aha moment. It was years and years of feeling different, masking to fit in, and finally piecing it all together. If you've ever felt like you're playing a role in your own life, you don't have to be on the spectrum to do this, and you don't have to be neurodivergent either. This episode is for you. To this day, I get the classic comments of you don't look like you're autistic, and why would you wanna be diagnosed if you've made it this far without knowing. To be fair, these comments are valid, and I used to think them all the time, but I do want to answer the question, why would you even go after a diagnosis later in life? Every one of us autistics, have their reasons for being diagnosed. For me, I needed to have a peace of mind of knowing why I couldn't fit in the workplace, why I was so exhausted and in burnout mode when everyone else around me was not. Yes, I did make it far in life without a diagnosis. But I would've made it a lot further in life if I had been been diagnosed earlier in life. I genuinely believe my life would have looked differently if I had known. I would have spent a lot less time worrying about what was happening to me. Why was I not able to interact socially like everyone else? Why couldn't I have friends? Why couldn't I be in relationships? The list goes on. Instead, I would've had explanations. You see, autism is something you were born with. It isn't some kind of disease or syndrome you pick up as life goes on. Being autistic is not a problem to be fixed either. It is simply another way to live in a society that has Normalities and those normalities, we cannot meet as autistics. Also, I think more and more people are searching for a diagnosis these days because it is getting harder for them to mask as an adult. And they need answers. Answers that would bring them healing and peace of mind. Having my official diagnosis has helped me immensely with understanding how I show up in relationships then and now before my diagnosis. Surely I've had friends and romantic partners along the way, but not many have stuck. I've picked up new ones on this journey, but I'm constantly thinking there was something terribly wrong with me mentally, and it wasn't mentally helping me. Relationships is one of the major challenges for me and for others on the spectrum. Another challenge for me was constantly losing jobs because of not acting in a way that was accepted in the workplace by neurotypicals. The American workplace often assumes everyone works and acts the same. Autistic brains are wired differently. Trust me. A lot of us can't keep up with the social demands, the constant changes in workload or even the spontaneity of changes in the work environment, such as the meeting's been moved up we have more work for you to do, or so and so is out can you fill in. Not only is it hard to be constantly rejected by the loss of jobs or even not being considered for a position because you are not able to keep eye contact through the interview, and the interview was not about whether you'd be fit for the job. That's hard enough. It's like high school all over again, not being accepted and understood, not just with the workforce, but also with yourself. This is why being assessed later in life can be very life altering for people. Like I said earlier before I knew I was autistic, life often felt like an unsolvable mystery, but in a quiet way. On the outside, things might have looked fine. But internally, I was constantly having to manage myself. The mystery to me and everyone else was I never knew why I had to do it or how I should do it. My differences started when I took my first breath. I was born with physical disabilities, and those were very obvious to my parents. Everyone. What wasn't obvious or could be explained was my body's inability to sense hunger until I was three or four. This led to my doctors thinking and questioning whether I could be born anorexic. The second was I wasn't verbal until I was around three or four, either. As a child, I was also not interested in interacting with anyone or any toy. It's been said that I could have been left in the playpen all day and not move, but just stare and observe. Obviously, this never happened, but it had my mom concerned, and when she took me to the doctors to explain what was happening with me not talking and not eating, and not interacting or playing with toys. They said, oh, it's because she has princess syndrome. Nowadays, these are clear signs of autism. Again, that was probably back in the day before they even considered that females could have autism. And with that, I was able to eventually talk and eat and everything, which was a huge breakthrough. And I wanna go on a rabbit trail I think it's important to highlight here that when a child has a breakthrough moment, such as finally being potty trained, the breakthrough is not only for the child, but also for the parent. So parents out there who have children that are neuro-diverse, you are doing amazing, and I hope you celebrate when your child has a breakthrough. Anyways, back to where we were. As I got older, I felt like everything took more effort than it seemed to take other people. I second guess my reactions, my emotions, the choices I made, and I often assume that if something felt hard, it was because I wasn't doing well enough. Comparison was huge for me, and it led me to have a really deep competitive spirit. And so I was always trying to one up people, that didn't work either. But because of everything that was happening, I constantly was making hard decisions. In a way that I was deciding that I should be able to handle this. It looked like me pushing through the exhaustion, challenging myself to do better and be like everyone else. But I ignored the signs that something wasn't working because I believe the problem was me. And this too can often be an autistic story for anybody else. At the time, these choices felt like I was being responsible. They felt like I was being mature. But looking back now, I can see that they were survival strategies made without the full picture. For me, masking meant constantly moderating myself, how I spoke, how I reacted, how much of myself I showed. I learned by observing what was expected to fit in. And I tried to match it even when it felt exhausting and I fully did not understand why I was doing it. Masking worked in some ways. It kept me safe. It helped me function, but it came at a cost. Over time, I lost who I was and I was so drained without understanding why. I wanna be clear, really clear about this. Masking wasn't dishonesty. It was an adaptation and survival, and it was what I did to get through life without knowing there was another way. I'm gonna go and transition and go through some traits of autism that I specifically have and how it looked like for me to mask. First, I often found myself pacing and singing. Now, you can imagine these were not accepted in the classroom, sitting in a classroom and working was the way to go. Pacing and singing is how I perceive the world. Another word for this is stemming. Stemming is a way of self-regulation in unfamiliar environments, stressful situations, and a way for me to make sense of this world. The pacing helped me feel safe and calm me down. Now, in the classroom, for instance if things were getting too intense or I was having a hard time memorizing things. It would've been helpful for me to be able to pace back and forth to be able to repeat the things I needed to memorize or even just to get up from the situation and remove myself from it. But that was not accepted then in the classroom. Now for the tones of songs, it really helped me come back when I was feeling overwhelmed. Now you might be thinking about these statements and it might seem like I was having a panic attack or something. But it was more than that for me. Sure, the symptoms might look the same on paper as a panic attack, but pacing and singing helped me make sense of a neurotypical world that I felt like I was alien in, and it helped my nervous system to become a more regulated state. You might be listening to this and you might be thinking this totally could be me or this totally could be like so and so. It is these light bulb moments that I think it is important to share my story of being assessed as an adult. You might not believe me or think to yourself, this is just another person claiming to be an autistic, just to say-- so it's like a fad diagnosis nowadays. And you are right in thinking this, but I challenge you to keep listening because you may know someone in your life who could be on the spectrum, but you don't even know it. And maybe that is even you. Of course these are my own personal experiences and everyone who's autistic experiences being on the spectrum differently. That is why I think it's really awesome and needed for everyone to share their autism story because it can relate and it's different each time, and there could be similarities. And honestly, that is why there is a spectrum when it comes to autism because it's a wide range of experiences, but also can be similarities. Now moving on. Another trait of autism I have is I am really, really, really bad at reading social cues and body language especially in overstimulating environments. For example, if a group of my friends and I met at a bar for drinks after work, I often would find myself or could find myself having a hard time tuning out the background noise. And therefore it was like I suddenly became deaf. I couldn't hear what was being talked about in conversations. And I would find myself laughing when they were laughing because I didn't know what was happening. Another example of this is when people leave subtle hints that something is bothering them, but never actually say what it is. And if they don't come to me and say that something is bothering them, I wouldn't know. So if you do interact with me in person and I give you the deer in the headlights, look, you know why. You may be asking right now. You sound like you are communicating fine. Yes, I am communicating, but we are not interacting socially. Now hear me out, this is the difference. I am speaking to you and you are listening. Well, at least I hope you are. But in this scenario, I do not have to read your body language or look for social cues. Does that make sense? This is why often you find those who are autistic excel in work that involves media, whether that would be content creating or being in theater. Communicating is one of my strengths and I love doing it. This is why I started doing this podcast because I'm able to communicate, educate on the autistic experience and I don't have to be in an environment that relies on social cues and reading verbal and nonverbal body language. Speaking of communication, another autistic trait I have is I am very honest. Now. I'm not saying that neurotypical people are dishonest. What I am saying is I never understood the term half true for white lie situation. I mean, to me it comes back to being honest and then not being honest. For example, if you want a friend who tells you you shouldn't be wearing a certain color or cut or clothing, I'm your gal. If you want someone to keep a surprise or say, oh yeah, sure, go ahead, you look great. I am not that gal because. I do not have a poker face. I can't lie even in my facial expression. I'm a hundred percent certain that those in my life who are not autistic would agree that I'm brutally honest. I don't get it when people say the term brutally honest, because to me it's just simple honesty. But how I've learned how to explain it to myself and to others is, honesty is just honesty but there's nothing brutal about it. I think when the word brutal comes to play is when people have not accepted the honesty, and it comes as a harsh surprise when someone actually says the truth. I don't know if that is accurate, but it is the way I have come to terms of people reacting negatively when I'm honest with them. Another autistic trait of mine is interoception. Now interoception is a way of our bodies being able to read signs like hunger, thirst, heartbeat, body temperatures, et cetera. I personally struggle with low interoception. What does that look like? Well, it usually is found when I'm hyper-focused or in a stressful situation, the feelings of hunger and thirst are turned off. I often can't remember when the last time I ate or, was thirsty, and I also don't feel like I'm hungry or that I'm thirsty. Eventually, I figure out that I haven't eaten in a long time because I get faint symptoms or I get fidgety or dizzy and it clicks that I should eat something. One way I kind of counteract this is if I know I'm gonna be going into a stressful situation, like I have to do a work presentation or I schedule to go to a Christmas party or something along those lines, I'll make sure that I have set alarms to go off to remind me to eat and drink throughout the day. Next trait I have is hypersensitivity to sound light, color, and smells. Having hypersensitivity to color can be a great benefit in situations like house decorating or putting up displays because I can tell you when your decorations or displays or overwhelming and need to be toned down. I have hypersensitive smell. For example, when I went go to a friend's house for a girl's night, I smelled what could only be described as mold. No one else could smell it, and it turns out my friend had mold due to a leaking pipe in her wall and she didn't even know it. When it comes to hypersensitivity to lights, it is like going to a rave for me when it comes to fluorescent lighting. I really cannot stand that is the new norm. I wish we could go back to regular light bulbs, I often have to excuse myself to regroup where it's dark or in natural lighting, and sometimes these hypersensitivities that I just explained can be a lot and too much and lead me into a shutdown and a meltdown mode. Now don't get this confused with a tantrum like like a child would have at a grocery store because they didn't get what they want. A tantrum can be controlled, but a meltdown and shutdown, they cannot be controlled. It is like my emotions burst and I cannot stop it. I remember countless times in high school where I was either being put on the spot in class, and it became a stressful situation where people changed plans on me very last minute. These could all lead me to a shutdown and have uncontrollable crying until it stops. It's like my nervous system suddenly went to overdrive from zero to a thousand just seconds, and the physiological response is uncontrollable crying until my nervous system calms down and feels safe again. I had a lot of this through my lifetime and before my diagnosis and knowledge of self-care. I honestly thought I was immature because I thought I was throwing a tantrum and something internally was broken. Now, when autism first entered my awareness. I didn't immediately accept it, even though I worked with children who were autistic, I helped assess them for autism, and I helped create their behavioral procedures with all my knowledge of the questions and signs of autism that are being assessed in an assessment. It never occurred to me that I could be on the spectrum. In fact, I minimized it. I just dismissed it, and I didn't actually think that a an adult woman could be assessed At my age, I didn't think that was a thing, and it wasn't until I went to meet someone for a drink and I did not know this person, and I could not for the life of me. Even today, see the nonverbal social cues that were happening that were given from that stranger. It put me in a dangerous situation and thank the Lord for the bartender because they could see what was happening when I couldn't and they intervened on my behalf, and that was my light bulb moment that I needed to be assessed, I never wanted to be in that dangerous situation again. Anyways, how I proceeded from there is I searched and searched for a psychiatrist in my state who would take on the task of assessing an adult female. There was only one in my state and it was a two year waiting list. As I've researched, this is a huge issue for women in America not having a psychologist who, a psychiatrist rather, or a psychologist who would assess a woman. And my conclusion that in my opinion, is that it's mostly due to women being so good at masking that it's hard to even see that they are autistic. After being diagnosed. One would think it would be a relief to finally know why you function the way you do, which was what I was personally expecting. But on the other hand, I experienced a lot of grief in my diagnosis. I had to grieve and find self-compassion for all the times I beat myself up for not fitting in, and also not fitting in the typical timeline, like graduating college, then going to a career, having a great career, finding a husband and having kids before you were 30. Now I know there's a lot of people who don't have that timeline. But for me, I really wanted those things and I still do but I wanted to get there like everyone else did, and my standing myself did not happen at all once. In fact, it still is happening. Being diagnosed did not fix anything. Don't get me wrong. I'm very happy I got formally diagnosed because it has given me a new lens and self-compassion. The Hawaiians have a different word for autism, and that is Taki Watonga, which means in their own time and space. This is what I needed to learn for myself. I needed to heal and look back at my decisions as not with judgment or cruelty.'cause I made the best choices I could with the information I had. I'm still figuring out the ways I mask how not to mask, and when it is appropriate to mask. Like at work, I'm a firm believer to be who you are created to be. Even if it's weird to outsiders. I wanna acknowledge that there are many ways people come to understand they're autistic. And or neurodivergent in other ways. What matters isn't the pathway. It's a clarity and self-compassion that can come from the understanding. It doesn't matter if they get a formal diagnosis or they self-diagnose. What matters is they are no longer in the dark. Having to constantly ask, what is the matter with me? Why can't I be like everyone else? It's easy to feel regret when you see things differently later. But regret assumes you had options you didn't actually have. I didn't fail. I had to adapt to survive. If you're listening and strugglers with similar feelings, I want you to know that surviving without understanding yourself is not something to be ashamed of. It is not something to judge yourself for. Learning I was autistic. Didn't rewrite my past, but it did soften it. It allowed me to replace self-criticism with understanding and clarity. If you have been wondering if you are on the spectrum or know someone who would be, I hope this episode offers you a little permission to be kinder to yourself or to them, you didn't make the wrong choices. You were doing the best you could with what you knew in future episodes. I wanted to bring you on a journey and exploring what happens after this realization, the exhaustion, the unlearning, and the process of figuring out who you are. When you stop punishing yourself for being different. I'll also be sharing practical tools to help you navigate life. Tools you can actually use to make the journey a little easier and a lot more empowering. Each of us, neurotypical and neurodivergent alike, were never created to be the same. And that is why there's only one of us, which makes living beautiful. I'm so grateful you spent this time with me today, and I hope something here gave you support, clarity, or a little bit of peace. If you'd like more conversations like this, I'd love for you to subscribe so you don't miss future episodes. Your support helps us reach other autistic women who might need a space like this too. If you know someone who can benefit from today's episode, please share it with them. I am signing off and sending you calm and compassion. Until next time.