Go to todaysautisticmoment.com for the transcript.
If you or someone you know has just been self-identified or diagnosed by a professional, this episode is especially for you. If you have been identified as Autistic for a long time and wondered about some things that happened right after, this show is for you too. Getting an Autism diagnosis changes your life. If you are late identified because you are over 30, 40, 50 or 60 years old, it changes your entire life history. You may feel angry, sad, relieved, happy, grieve, or do all of these at once or over time. Your perception of yourself will change. Other’s perception of you will change. How do you take care of yourself during this time of incredible change? Listen to Becca, Carole, Scott, and myself as we share our stories and advice to help you at this most crucial time in your life.
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Self-Care After Autistic Diagnosis/Identification
August 6th, 2023
Welcome everyone to Today’s Autistic Moment: A Podcast for Autistic Adults by an Autistic Adult. My name is Philip King-Lowe. I am the owner, producer, and host; and I am an Autistic Adult. Thank you so much for listening.
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Today’s Autistic Moment is a free podcast that gives Autistic Adults access to important information, helps us learn about our barriers to discover the strengths and tools we already have to use for the work of self-advocacy.
This first segment of Today’s Autistic Moment is sponsored by The Autism Society of Minnesota: Minnesota’s First Autism Resource. For over 50 years The Autism Society of Minnesota has been honored to support Minnesota’s Autism Community. Visit them online at ausm.org.
Thank you for joining me for this episode Self-Care After Autistic Diagnosis/Identification. My guests are Becca Lory Hector, Carole Jean Whittington, and Dr. Scott Frasard.
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One of my favorite games that I play on my iPad is Atari’s Rollercoaster Tycoon, Touch. The player gets to build an amusement park. They pack the park full of rides, food stands, shops, decorations, and rollercoasters. My main park has seven rollercoasters. Each rollercoaster is unique in its materials, types, colors, intensity and how much fun each could be. The thing about rollercoasters is that the decision to ride one needs to be made carefully. Before choosing to ride on a rollercoaster, we need to think about if the particular rollercoaster is one that we can handle. Is our health in a position to take all of the fast movements, the sudden turns, big hills, loops and more importantly the loss of control? Once the decision is made to board the train to take that rollercoaster ride, and the attendant pushes the go button, you can no longer make the decision to get off until the ride is over. Everything that happens while on that rollercoaster ride is out of your control. You might have fun, you will probably scream, possibly cry and, possibly get sick. The difference between the rollercoasters you can ride in an amusement park and the emotional rollercoasters of life is that sometimes you can choose to ride them, and sometimes what happens is out of your control.
I am using the analogy of rollercoasters because you will hear my guests and I talk about the emotional rollercoasters that we had after we were diagnosed and identified as Autistic. Many late identified Autistics talk about what their lives were like before, and what happened shortly thereafter they were diagnosed or identified. There comes a moment of clarity in that we understood things in our past that we and others had questioned for a long time. There are moments when we grieve the many mistakes we made, and the loss of relationships we cannot recover for one reason or another. We may feel anger. We may tell someone at work that we are Autistic and loose the job. An Autistic diagnosis/identification can cause relationships become stronger or they might end. Once you are diagnosed/identified you may hear people you have known for a long time being dismissive and invalidating. They may say things like, “You don’t look Autistic.” “You’re an adult.” “You’re too smart.” “You have a job.” “You don’t act like my 5-year-old niece or nephew with Autism.” You may have been diagnosed/identified for many years, and you are still hearing comments like the ones I just mentioned.
On this episode of Today’s Autistic Moment, we are going to validate you. We are going to let you know that the emotions you may experience are real, they are yours, you have a right to exist as you are. We will not make any value judgements on your behavior or preferences. My guests and I are going to share our experiences after being diagnosed/identified, and how we have been managing our self-care. Your experiences may be very similar or completely different. Whatever your experiences are, you need to do your own self-care. We are going to give you some ideas as to how to do that.
After this commercial break, Becca, Carole Jean, and Scott will join me to tell you about our experiences after Autistic diagnosis/identification. Please stay tuned.
Commercial Break I
Welcome back everybody, and I'm so glad we're here talking about this one particular topic. Self-Care After Autistic Diagnosis/Identification. I had been inspired for a long time to do something about this. Because I remember my first year my first years after diagnosis, what a tumultuous time that was for me. And I know each of us have had our own experiences with that. You know, for me, those first months, those first days was filled with every emotion I can imagine. I was crying, I was angry, I was happy. I was glad relieved all of those things. And I think every Autistic might know something about that. And so, I want us to really have this great conversation. And, you know, the great part about this conversation is that there's four of us, each of us with our unique experience, and which is great because of the diversity among Autistic people. And our diagnosis or identifications, whichever words they like to use. So before. A little different from my usual first question here. Talk a little bit, each of you please, about just a tad bit about what your life was like before you were diagnosed, your experience of being diagnosed and the time that followed? What were some things that you experienced, that you would like others to just be aware of? We'll start with Becca, go ahead.
Becca Lory Hector
My very first real reaction to it was honestly I told you so. And that feels like a crazy reaction. Right? But I feel like I had spent well, I had I had spent my whole life up until that point. So, for 36 years, I lived on this blind hat going, listen, I'm different. Listen, something's not right. Listen, I don't understand why this doesn't work. Why am I not like everyone else? What, like so many parts, right, like for my entire life. And when I got my diagnosis, not even right before that, when I self-discovered, I want to say even in that moment, I was like, oh, right, there was that relief and validation of my experiences. And when I got that official diagnosis, I was like, Man, I want to stand on a rooftop and just be like, world, I told you so. Right? Like I told you, I told you, I told you I told my teachers I told my parents, right. So much. That was my first emotional response. It was just so frickin validating to my experience. I was had, you know, never been validated. Right? It was why my self-esteem was so low. And at that point in my life when diagnosis came in, about when Autism entered my life. I was three years homebound and suicidal, I had plans I had, you know, the whole deal. I was really, really close. And so, I say a lot. Autism saved my life. And they did. I know I would be dead right now if it didn't come into my life at that particular time. And so there was a lot of gratitude. That was a diagnosis do like weirdly and because, man, right, it really didn't save my life. So, it was a really emotional time. I want to say it was like that first year is very much was an emotional roller coaster for me. What was it like for you Carole?
Good, ahead Carol
Carole Jean Whittington
So, in so many different ways, and so many similar ways to what Becca just shared. My friend Diane J. Write of Autastic has a group on Facebook called Surprise! You're Autistic! I was truly surprised. Because I was 39 and 10 months old. So, I was almost four decades into living, and believing that I was just a failure. That I wasn't living up to my potential. That all of the things that people said, because I was had an exceptionally high IQ and I seem to be so good at so many things, I'm really excelled. But then the things that were really obvious like everybody else did, it was no big deal I struggled with and the things that they struggled with, that they didn't struggle with I struggled with. So, when I sat in an identification with a neuro psychologist for my son, who was 10 at the time, and I'd been reading the parent questionnaire, you know, for the several weeks we've been practicing, and he had said, Hey, what do you think about those questions? And that's like, cool. I don't really think much of anything about them. They make sense to me. And as I was reading them, you know, and so that was sort of maybe the only thing he'd asked, and we were going through the process of here's the report and all of the information. But as we were getting the results for my son, and they were telling me, you know, yes, he is Autistic. And these are the things that he's going to need additional help with and occupational therapy and things like that. And he looks at me over his little half glass of salt and pepper hair and this little sport coat. And he says, you know, you were a missed. And in my very literal thinking brain, I said, No, I wasn't, I'm right here, nobody missed me. He just kind of smiled and nodded his head. And he says you need to come back and see me. And so, he goes on about the business and goes for about 10 more minutes. And all of a sudden, the penny dropped. And I stopped and I looked at him, I said, Wait a minute, are you saying I'm Autistic? And he said, See the receptionist on the way out. You need to come see me. And so, in a lot of ways. I it like Becca said she had been telling the world like I told you so. And for me it was I had lived and had agreed to and had taken on the identity that I was just a failed human. So, the possibility of there being something that answered why life had been so hard, did not come into my purview for until someone said, hey, you know where you were missed. And that changed my life. But instead of embracing that, and going, let me figure what out what this is, as the mom in that situation. My approach was, if I am Autistic too and I know how hard and how much I have struggled. I want to make sure I do everything for my child. So, I poured everything for the next two years into making sure he had everything that I didn't have. And at the end of that two years, I hit the worst burnout of my life and what I call those five lever levels of spicy burnout, I hit that ghost pepper level five, I was so hot, I was not. And my body shut down. And I was in this place that I either didn't want to be anymore, or I was going to figure it out. And with two small children that I absolutely adore. I chose I needed to figure it out. And having that understanding that there was just something I didn't know there was a piece of information that I had not had to that point. My life for the first time I just turned 49 I am in a place that I never imagined even possible. Even when I thought there was a possibility I still couldn't dream as big as what the reality has been. And that is I have sustainable energy every day. I am happy. I am I feel free. I feel me, I feel unmasked, I feel unveiled, I feel fully grounded in the person I was created to be. And I'm showing up every day, living my best life that I knew, I knew it was mine. I just didn't know how to get it. Because I believed all of the things externally. And that identification did come with that same processing phase that I call, you know, like, what so many of us the relief, the elation and like, oh my God, there's a reason there's an answer. And then the grieving phases that we go through because it, we go through the, what would have been possible, what if what would have happened, what could have been avoided all of the hurt all of the trauma, all of the things at this point? And after we go through that we reach this place of like, well, okay, now I'm learning some stuff. And I recognize that, you know, now I've learned about masking and climo camouflaging masking to the professional level of camouflaging. How do I start peeling those off, and we do those first couple layers pretty easily. And we get to this place after a few of those where we get down a little bit and that onion. And we're like, Well, wait a minute, I have no idea who I am. Because we never had the opportunity to explore that. And that's, that's where the beauty begins in my book.
Scott your next.
Dr. Scott Frasard
Wow, how can I contribute anything different? Both of your experiences resonated with me. I also grew up feeling very different from the rest of the world. Things that made sense to others and particularly around communication especially and how the world just seems to talk in generalities or talking around things versus just coming straight out and say this. It just, I felt perpetually confused and didn't know why. And I wasn't very good in school. And I think that played a big role in it. Though I did have a huge interest. I enjoyed making a in high school and really, really put myself into that and enjoyed it immensely. I wasn't formally identified until I was 48. And all that time for all my professional career and the jobs that I had it I felt like I never could reach others’ expectations and a large part of what I did. And the other times just a flat out exceeded everybody's expectations. That in and of itself was very confusing. But it wasn't until my wife, and I were watching this a one season TV show called The Employables. And it was a reality show that followed neurodivergent people through their process of trying to find employment. And every time they spotlighted an Autistic person, I just resonated with them one way I totally get it. The other folks like there are people that work Tourette's or and I can't remember some of the others. Those didn't quite resonate with me, but the Autistics did, and I found myself I found myself searching on the internet. And of course, that point I don't know the difference between the voice of the Autistic community and the voice of the larger community and what to believe what method believe and like, maybe I am. So, I, it took a bit of time to find somebody in my area who would evaluate an adult, but I did I found that, and it took a few months to go through everything and get the results and probably like everyone else, it was a roller coaster of emotions. I heard you know like Becca said I told you and the surprise that Carol Jean said what? I went through all those emotions, and I remember leaving the psychologists office having this overwhelming a feeling of happiness, even though I was crying my eyes out. And the formal identification changed my life. Because it gave me answers to an explanation for my world, my worldly experiences. And then there was nothing wrong with me. I'm just in a world that doesn't cater to me. And that was a really empowering, a realization. And since then, I've really a, a gone deep into learning everything I can from every possible perspective I can about Autism, why some people believe things and not others. And I kind of lost my train of thought here, so forgive me for that. But it's one of those things, it's changed my life for the better. Because now I'm able to share experiences and why learning that I'm Autistic is such a critical part of, of who I am, and understanding myself and why I believe that should happen for others as well.
Yeah, you know, I can identify with all of you regarding your thoughts and experiences, and without going into a long explanation of it. But in 1994, I did something that I was told I would never do. I graduated from a college with a bachelor's degree, actually was a bachelor's degree in church music was applied concentration in organ. I was a professional church organist, music director. I actually played my last public recital, on September 10, 2006, in the gallery organ of St. Patrick's Cathedral in New York City. The thing is, is that during those years, I had gone in and out so many jobs, and having such so many social problems and problems just talking with my superiors and coworkers and volunteers and everything. And I had no idea why that was, until one day, I was working with a psychiatrist who said, who asked me, then, when we were still using the word Asperger's, we are really not using that word anymore. But she had asked me, have you been evaluated for it? And I said, No. Well, within a few months, I had finally been tested. By my, my, the person who evaluated and diagnosed me, named Mark Foster, he retired, had the gosh darned nerve to retire in 2017. And so, and after that, I understood why there were things that I did in my childhood. I understood why there were the issues with communication, job retention, everything. And I went through a period of four years of realizing that the career I once loved is gone. Because I can't recover many of those relationships. I had to accept that those relationships were gone. And so, it wasn't until I discovered The Autism Society of Minnesota and late 2017 that I felt like I was completely and totally isolated alone. I didn't know any other people but myself who were. And once I found the Autism Society of Minnesota and discovered that there are people like me, and that The Autism Society of Minnesota offers skillshops, and they actually offered a wonderful class for Jason and I to learn how to communicate with each other and so many great things I learned. I kept thinking to myself, I wonder who else has access to information like this. And so, in the year 2020, that's what spurred me to begin Today's Autistic Moment when I realized, okay, there's a lot of information that Autistic Adults don't have, maybe I can come up with a way by which we can, we can change that. But there is a period of the emotional roller coaster ride that Scott was talking about. There are those moments when you just feel like you're lower than a snake shadow. There's moments when you feel higher than the kite flying. You know, you feel all those emotions and sometimes you feel them all at once. Sometimes they're all separately. And one other thing that I like to acknowledge is that that can occur. Not only does our perception of ourselves change, but also the perception of us with many people who are around us, that also changes.
After this next commercial break, I will talk with Becca, Carole Jean and Scott about a survey that was completed by 26 different Autistic Adults and why being Autistic is an identity.
Commercial Break II
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Um, one of the things I want us to talk about is that I sent out a survey to 26 different Autistic individuals and asked them about their experiences with being diagnosed or identified. And we got some pretty amazing answers, including one that suggested that the majority of those who were diagnosed were about 27. Given the fact that one of you was diagnosed at 36, the other one at 48, me at the age of 43. And, Carole, you said 39? Is that about, right? Okay. So, I'm interested in that. And then I'm also interested in things such as those who were evaluated by medical professional versus those who and those who are self-diagnosed. I'm also very interested in the fact that we got a majority of people who said they were both diagnosed and identify, there's so many pieces in this that are absolutely incredible. And so, I'd like to know, you know, to all of you, when you saw this, this the results of this survey, what might that have told you? Becca, why don't you start and then again, we'll go through, go to Carole, and then Scott, go ahead Becca.
Becca Lory Hector
Wow, this so this thing, it's kind of a loaded thing for me. Right? So right out of this, looking at these results, and thinking about this question is historical for me, and that sounds weird. But I've been doing this for over 10 years, right? I've been advocating for quite a long time. And when I started self-identification was not a valid option to people. When I started, we were only acknowledged if we got clinical diagnosis. And that's a problem. Right? That was the problem. Right? And it's a problem. That's, that's moving, right. And there were reasons for that, that caused a lot of us to advocate. Many people do not still to this day have access to clinical diagnosis, because it's too expensive, it's not covered by insurance. It's only exist in English, right? And any number of other systemic barriers that keep people from a diagnosis, right? And it's out of those systemic barriers that we developed deep respect for self-identification, right? That's where that love came from. Right? So, see, you know, more and more people self-identify confidently, right, makes me smile as an advocate. We got somewhere, right? So, I feel like all right, right? But the piece of it that I love more than anything, is that piece that says identified and diagnosed, because it means we've made even a further strides in advocacy than I ever imagined. That we are safely in that zone where being Autistic is being seen as an identity. And that's separate from the conversation of diagnosis. And that to me is like goose bumpy. Like I have goosebumps talking about it right now. Because I'm one of those people that I answered, identified, and diagnosed, right? My reasons for diagnosis would not stand up to my own logic today. And I want you to know that right? I would not go through the diagnostic process again, right now if that choice came to me. Okay, I did it because back then my mental health was so bad, so bad. My self-esteem so poor, that even if I believed 100% that I was Autistic, I needed validation from the outside world. I needed that. Right. So that was one piece for me. And the other piece is, I lived in New York at the time. So, I was surrounded by what was accessible to me to get a diagnosis. So, I could, and I also at that time again, I knew it was going to impact my life so hugely, that my reason for medical diagnosis was that I wanted that piece of paper for somebody I thought at that time, it would get me some things. Right? And that's not true. Right? And so that's what that survey is to me. It's that big to me. Right? Guide to me that I'm as an advocate, I haven't wasted the news. Right. And I love that. And thank you guys for answering.
Yeah, go ahead. Go ahead, Carole.
Carole Jean Whittington
I'm going to keep it short and brief because I know that my friend Scott has got some beautiful insights on this one. And Oh, Becca, I'm over here like cheering so loudly because, you know, I, I wasn't seeking medical diagnosis or external validation because I was clueless. I just thought I was broken and struggling and the fact that truly that that gentleman that day gave me that gift I am so grateful for. Because it has changed my life, it saved my life literally saved my life. I like Becca, I am a huge advocate and have been advocating for many years, moving away from the broken medical model deficit that is out there and the broken narrative, as I call it, because this is an identity, this is an experience, I am not less than what has been established as the status quo. I am already whole, and I am not broken, I am full and complete just as I am. Just as all of us are. So, for me, I don't even use diagnosed anymore. I just say I am Autistic. I identify as Autistic, because I'm looking to change the language from branding and marketing, because that's a lot of what we're doing in advocacy. But that's sort of my take on it. And I'm going to defer the rest of my time to my friend, Scott.
Dr. Scott Frasard
Thank you so much Carole Jean. It's interesting because my first career was in the medical field, I spent 22 years as a paramedic, that's all I knew was everything medical, and what little bit I didn't know about Autism, it was all of that pathologic pathological language stuff that we hear. And coming from a medical field, the word diagnosis has a very definitive meaning. And at first, I was like, Yeah, I'm, you know, I embrace the fact that I am Autistic. But I also was in that weird gray area of still the medical a perspective. And I would say, I was diagnosed as being Autistic. I have Autism. I used those terms. And then as I really learned from those in the community, especially Becca and, Carole Jean, once I get to see your work, and it really started resonate, I was like, Well, you know what, I'm seeing the difference. So, for me, I kind of have a couple of thoughts here. One is that being diagnosed and being what I say formally identified, that's my language for I was diagnosed, are synonymous, and it really comes down to the whole language preference. And that's fine. But then I also see this other side of things like Carol Jean was talking about, is Autism is also an identity. And at first, I didn't buy into it. But when I started looking at things through that cultural lens, there are things that are very unique about us, especially in how we relate to one another, relate to the world around us, and even our own selves, but especially those externally. The idea of Autism as an identity really came to light. And they'll say, yeah, so I have been formally identified, I have been diagnosed, but I also embrace this identity of I am Autistic. I can't be separated from it. It's an integral part of everything that I am that I do that I experience. So that is truly an identity. So hopefully, I did not wander too far off of your question, but I, those are the thoughts that I have.
Yeah, you know, and you, you were involved in my very first Autistic Voices Roundtable Discussion, where we talked about identity language, all of whom said that they embraced the identity first language. And that was just such an excellent conversation that you were part of. Yeah, I totally agree. The one statistic in this, in this survey that actually makes me very proud and happy is the one with it, where 65.4% answered the question that yes, it was easy to get learn information about being Autistic after your diagnosis or identity. That made me so happy. Now, that tells me that Carol and you and me and other podcasters we're making progress. We're doing some things, good things. That's what that tells me. As for the rest of the world, well, we can't speak for them or our podcasts. Yeah, we're doing something so good stuff. But the thing is, is that what that tells me it's that people who when they're diagnosed or identified, take your pick. We're not just settling for the one-time identification or the diagnosis. We want more information about how this identity and what this means for us, and people are finding what they want to find. That's some of the best news I've heard from this, this whole this whole survey and, you know, thank you to the 26 people who replied. What I want to do now is let's move into the self-care, because that's really what this entire conversation is about. And each one of us did some things to do our own self-care. And Becca and I have had numerous conversations about self-care. I'm gonna say, you know, Becker's, one of my go to people about self-care, because Becca talks about it so well. But as, as Becca and I have said, on numerous occasions, everybody has the right and need to do your own self-care, and everybody's self-care is going to look different. And so, I want us to talk about that, talk about that self-care. And then as we talk through this, I especially want to focus on one of those, that one response that I spoke with you about before we started, but first, I want to talk about how we do our own self -are. And this is where I'm going to start and then I'm going to let all of you proceed with your answer. And that is, I want to start with a message to the caregivers, because I think that's probably the more important piece. There are many times in which our caregivers are needed. But there is probably no time that our caregivers are needed. As it is, after we've been diagnosed or identified. Because of a huge roller coaster ride we go on. And I know that ourselves, our excuse me, our caregivers look to try to protect us, they like to try to be there for every little moment. And I want to start by saying this is a moment where whatever you think you know, or understand you need to set that aside and let your Autistic loved one guide you as to what they need. Because we are on a on a period of self-exploration, self-understanding, like we've probably never had. And so, what we need our caregivers to do is to do some standing back, come in, when we asked you, you know, tell us, you might point something out to us. But in the end, you need to leave it to the Autistic individual to let you know what they need from you. Okay, and let me just say, I had a blessing that I wish everybody would have. When I was diagnosed, the very first thing my therapist said to me, I want to work with you and your husband, because you are the people that communicate most. And I want to help you learn how to communicate with this new thing, this new thing, this new identity within yourself. So, let's start with that. And Becca start out because this is such important, so important that we communicate about doing our self-care. Go ahead, Becca.
Becca Lory Hector
Um, my thoughts on self-care with diagnosis are surround really the first year for me, and I find that was the most challenging. I find it to be across the board for folks that that's the most challenging. And I think it's because it's you know, it's an entire reroute of your identity. Right? And we all go through kind of a similar process when it happens, right? We go, oh, okay, now I have this in my life. And we first have that moment of celebration and joy and relief and the thing, all of the feelings we talked about the surprise all of that, right? But after that we do like, Okay, so now what? Right, so now I have this information, what do I do with it. And that's where this self-care piece comes in. Because a lot of what you end up doing that first year is very isolating. It's a very lonely part of the journey. It's and it's a real emotional rollercoaster. It's like the opposite of what we like. So instead of having really, really like, ordinary days that follow the same routine that we feel the same way if we do the same things, right. We have a lot of, you know, rollercoaster of that instead of that smooth sailing, and that's hard for us and a lot of different ways. Right? So, in that process, we need to find self-kindness and I think that's where I always ask people to begin right? We need a lot of forgiveness in there for self. We are going to think about some really painful things. We are going to review our lives in that first year and you look for the Autism everywhere. Was that me? Was that everyone else was that the Autism? Did I make a bad choice there because of the Autism? Did I do this because of the Autism and then you start seeing it in all the people around you. Oh, that person over there as autism is that better that person's Autistic, right? And you see it, no, you can't help you cannot get away from it for that first year. So, in there, you need to do some great effort to balance. So, there's the piece of self-care, that is the work, right? There's the processing all of these thoughts, there's the going to seek a therapist or going to seek a coach or going to do some mindfulness or meditation, or whatever activity, right that you choose, right, there's that piece. But then there's also the time when you're sitting still, or when you're tired, or when it's an especially hard day or whatever, where you have to go back to like basics. And remember to rest. Remember to eat right. Remember to shower, right? And to figure out what parts of those things right work for you and don't. And so, there's a lot of in there, right? Yeah. I think about self-care is those two pieces and how important they are in that first year.
Yeah. And before Carole jumps in here, I want to say that this is one of those things that's that occurred to me after diagnosis. And the years that followed, is that was the period of time where I was becoming aware of sensory processing. And there were so many things in my life that I didn't realize were affecting me. That had been for many, many years. Why I couldn't digest certain foods. Why there were certain colors that bothered me. Why there were certain smells that just made me sick to my stomach. And the fact that I'll say this, during those years that I was, I was discovering my sensory processing. They were actually getting more intense, not less intense, because now I noticed them, right?
Becca Lory Hector
Yeah. Right? And you forget how many years you spend; you don't even realize how much effort and energy and years you spent ignoring like how much quickly turn it off? Right? Absolutely. Anger, you almost want to do the reverse. Like in those moments of frustration that it took so long to know that you almost want to be like no noise, no one can make it in front of me. Nobody can make. Right? You want to go the other way? Because of our black and white, you know?
Yeah. And yeah. And you're gonna have people who will tell you that didn't used to bother you before. Well, it does now, so that sort of thing. You know, go ahead, Carole.
Carole Jean Whittington
We're totally in my wheelhouse when we're talking about this. Because for most of us, we come to our identification late in life, because we are overwhelmed. We are exhausted. We have reached this place where we have hit probably the rock bottom of our mental and emotional experience to date. And for so many of us that what leads that is what leads us to the gift of our identification, sadly. And what I talk about, and help people realize is that most often, that is when you have hit the worst burnout of your life. Because burnout is essentially consistent unmet needs. And for so many of us we have through survival. Because we knew somewhere we were different. And the world responded to our differences in a way that didn't feel safe, physically, emotionally, psychologically. So, we did things that kept us safe in our minds. And we survived. We people pleased. We worked harder than everybody else, so that no one could say we didn't do it perfectly. Because our self-worth also began to be tied to and safety tied to how we succeed or didn't. And every thought that we have requires energy. We got a lot of thoughts, folks, let's just be really honest, our beautifully, wonderfully wired brains are not those, you know, slower types. We have the hyper speed dice, we got lots of dots we are lots of energy consumption happened. And when we think we think about all kinds of things, and we do mental gymnastics, and for so many of us, that's fun. But it's also exhausting when you don't recognize that that's what's happening. And when we talk about our sensory system, when you are in burnout, your sensory profile is different than when you are in thrive. And for 100% of all of the respondents over the last three years to the mind your Autistic brain burnout Global Research Project 100% of Autistic ADHD people say that they experience heightened sensory sensitivities during burnout. And for that reason, we also have to look at where our energy is going out. Everything that I teach is that knowing where energy comes in for you, and how to effectively manage the energy that you have is the fastest and most efficient way to get out and stay out of burnout. And it is so critical when we're talking about self-care because I'm alexithymic. So, I developed the unveiling method specifically for being able to identify because if it's unmet needs, then what the hell are our needs? We can all name off those top five needs, you know, food, shelter, clothing, financial security, you know, safety, but there's 30, basic human needs that all neurotic types need. And for a lot of us, we've gone our whole life denying the fact that we have needs, because that felt like it was too much and a big demand on the people in our life, because that was too loud, or I don't like those goals, or I need this specific food. And we were "needy" to the rest of the world. But essentially, it was just we needed to get our needs met, but they were so consistently unmet, and we didn't feel safe asking for our needs. And a lot of times, we didn't even know what our needs were to articulate it. So, part of the unveiling method is being able to look at those 30 basic needs. And identifying for you right now, what is the what's the unmet needs? What's the number one? And what's your sensory profile look like right now in burnout? Because it's going to change consistently, it's going to ebb and flow. But when you know what that is in all seven areas of your sensory profile, not just five, because interoception, proprioception and your vestibular those all factor in, especially for us, those things make a difference, because we can't self-care if we can't identify what it is that we need to self-care in the first place.
Yeah. Before Scott takes over, Becca needs to bow out. Becca, do you have anything last minute things you want to say?
Becca Lory Hector
Um, you know, it's interesting, I really, I want everyone to really take away from with from this sort of the consideration that you want to give to diagnosis. I think I'm glad that it's changing, and that we have really embraced self-diagnosis and self-identification. And so, I want to encourage folks to know that there is no right way to do it, right? No, one thing is better than the other, you need to do what's best for you financially, personally, right? All of those things, and that there is no one right path for anybody. We all make our own.
Yeah. Yeah. Well, thank you, Becca, I know you gotta go off for now. But thank you so much for being here. And we'll definitely be talking with you soon.
Becca Lory Hector
Thank you so much.
You're welcome. Go ahead Scott.
Dr. Scott Frasard
So, both Carole Jean, and Becca, I couldn't have said it better. Something that stuck out in some of the two people hadn't know that in those responses is giving themselves grace. And especially in light like Becca was talking about this that first year. You gotta get your sea legs. And you got to figure out what this thing means and what it means to you. That's part of the learning process. But something that I feel really strongly about, and I wrote about this in my book is moving away from generalities, when it comes to hear this kind of support needs that I have to be very, very, very specific. And I actually went through a reflection exercise that I did over like a period of a month or two. And every time I needed help, whether I asked for or not, I made a mental note of that. And I turn that into a list of specific support needs. And just to kind of give me a couple of examples. And we heard this from Carole Jean. I need time and space to recharge before and after social engagements. Whatever they are, that gives some that gives others something very tangible. And it gives me that ability to communicate this is what I need, other than just leave me alone. Being very specific helps everybody and another one is scheduling appointments for me. I hate it. Fortunately, my wife doesn't mind she does that for me 90% plus of the time. But from my humble estimation, regardless of how many support needs one has, whether it's something that we may not even see as a support need like glasses, or food we depend upon others for food. All the way up to meaning 24/7 care by a skilled professional. Every everybody has something, some set of support needs that can be articulated very concretely. And I think one of the one of the things that is still problematic in the community is using generalities when it comes to support. And like, in, you know, you hear people talk about hitting milestones of like reading or socializing or whatever. And so, you need therapy for that. No what, what is what is not happening that is causing distress for that person that they need support with? Focus on that, and not about this is what I think you should do, in general terms. And I don't know if that made any sense or not. But I think if we spend the time like Carol Jean was talking about spend the time and articulate those, and refine that list is a living document, refine that list over time, that way, we, the world is a better place, because people can see and know exactly what each individual needs because nobody is the same.
No, no. And, and some Autistics have additional disabilities, including, you know, Autism and that sort of thing. So, I would say that the periods following your diagnosis is definitely a period of self-exploration and self-understanding that you probably didn't have before.
After this final commercial break, we are going to talk about one specific response that we got on the survey with some advice for those whose lives may have fallen completely apart after diagnosis/identification. Immediately following that, Today's Autistic Community Bulleting Board.
Commercial Break III
On August 20th, Robert “Bob” Schmus joins me to talk about Autistics Transitioning to Adulthood. This is a special show for Autistics going through the transition into adulthood. You have gone through your years in school and being looked after by your parents and caregivers. There are some major changes that occur as you become an adult. Many programs that are in place to assist Autistics transition to adulthood are not adequate to meet their needs. Robert is a mental health professional who works with adolescents who are Autistic. Robert will join me to talk about his work to help Autistics transition to adulthood.
The Fall season begins with Lisa Morgan returning to Today’s Autistic Moment to talk about Suicide Prevention for Autistic Adults. According to a study by Cassidy et al in 2018, 66% of newly diagnosed Autistic Adults experienced suicidal ideation. That is 17% higher than the general population. There are many reasons why Autistic Adults experience suicidal ideation. Lisa understands first-hand what being in a state of crisis is for Autistics. Lisa is an Autistic Adults and a life coach for Autistics who find themselves in crisis situations. It is so important for Autistic Adults and their caregivers to listen this episode. You just might save someone’s life.
Dr. Devon Price comes back on September 17th to talk about Conflict Resolution. Autistic Adults face more conflict than just about any group of people. Our challenges with verbal and nonverbal communication, finding our social support networks that understand us, and dealing daily with our disabilities can burn us out. Autistics need strategies for conflict resolution. Join my guest Dr. Devon Price as he helps us understand where our conflicts come from, and how we can work towards resolving them.
On Octoer 1st Nick Walker will be my special guest for Neuroqueer: Another Coming Out. October 11th is National Coming Out Day for LGBTQIA+ people. There is another group of people coming out that needs to be recognized for who we are and celebrated. Nick Walker is the author of Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities. According to Nick Walker being Neurodivergent, “means having a mind that functions in ways which diverge significantly from the dominant societal standards of normal.” It is from definitions like this that we get the word, Neuroqueer. Nick Walker will talk about what Neuroqueer is and why it is important that we be recognized as coming out as our own unique people.
Check out the Future Shows page on todaysautisticmoment.com for all upcoming shows.
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Thank you for listening to Today’s Autistic Moment.
Before we, yeah, before we wind up to the end of this, there was one response to the survey that I definitely want us to answer because this, this particular response was disturbing. My last question on the survey was, you know, has your life gotten better or worse since your diagnosis? And there was, as I say, there's this one response in here that I'm just going to read it. For those before I do. Every everybody who took this survey is anonymous. There's no names or anything. But this particular participant wrote, "My life is so much worse, I have lost my job. Although it's taken 10 years of persistent bullying, and micromanagement to get me this far. My life. My friends set me boundaries, and I can't maintain them, I get to blame for being too needy to oversensitive, etc., I am alone, I have no reason to continue to exist." And before I let you two go with this, first of all, my first piece of advice is seek out Lisa Morgan at autismcrisissupport.com. Because Lisa knows firsthand what it means to be unintentionally harmed by well-meaning professionals and well-meaning people. But here's one of those things that I can definitely I can definitely identify with maybe the two of you can too. But when you're first diagnosed you know, it's like having the scales fall off your eyes. But at the same time, you're having to reorganize your life, the things you can do the things you can't do the things you can succeed at maybe things that you can't. And I then this is not the first person to say, I found out I'm Autistic and I've lost a job. I've lost friends. I've had friends that you know, have given me some really negative replies. Yeah, I we know what that means. But um, you know, we're not going to minimize how this person feels, because that won't help them. But we are going to say that this doesn't have to be your ending. You can pick up and move on. But we all want to give you a little advice about how to do that. So, let's say this is not the only person saying My life is so much worse. Let's give them some feedback. Want to start with Scott and then go to Carol Jean if that's alright with you. Go ahead. Go ahead.
Dr. Scott Frasard
This one's a tough one. As a paramedic, I have personally been witness to many situations that have ended not so well. So, I've seen I've seen this from a perspective that most don't see it. And something that has bothered me for a long time now, and especially now that I know I'm Autistic and what that means, and especially when it comes to feeling ostracized and not worthy, that sort of stuff, is we keep seeing people wanting to stop others from thinking about hurting themselves or suicide or, or, you know, that sort of thing. But yet, the reverse isn't addressed very often, which is, what are we doing that makes them feel this way?
Yes, I agree.
Dr. Scott Frasard
And that's the part that, you know, when we get to suicide prevention month, when we talk about what gotta stop people from doing this, there comes a point in time where you have to look in the mirror and go, What am I doing that makes others feel this way? And I think it comes down to, and this isn't all inclusive, but be kind, be empathetic. Be supportive to everybody. Whether you agree with them, whether you have things in common. It doesn't matter if somebody needs help. Help them. Sorry, I'm kind of this is one that but because so much emphasis is put on the person who feels that way versus society that's making them feel that way. It gets me angry.
Yeah, yeah. I agree. Yeah, yes, you're right. Yeah, you're absolutely right. And yeah, go ahead. Carole Jean
Carole Jean and Scott Frasard
Sorry. Go ahead, Carol. I haven't thought many. Yeah, go ahead. So now, I think lost my thoughts, sorry. Go ahead, Carol, it'll come to me.
Carole Jean Whittington
If it comes back, just hop in. You know, this is one of the many reasons that you and I are such good friends, Scott, because of your heart. Thank you. So, I'm going to talk about this from a very personal place. I have experienced suicidal ideations, going so far as to have plans and even attempts in my life since the age of six. And for so long, because that was part of what would come up for me. Number one, it was very shameful. I felt ashamed, I felt guilty. I felt like I didn't deserve to even have those thoughts. Because I had a wonderful family. And I had everything that I could possibly need. What could be so bad, that I would feel this way? So, I internalized that as being my fault, my own us an agency. And that's all heavyweight to bear. And for so many of us, when we don't know the density of our neuro type, and when I say that I'm also I'm talking about all of us, not just our brain, it is also our body, our physiology that is different. So, I also have the trifecta, the co-occurring conditions that are very common. Within our neuro type, I have pots and M casts and I have hypermobility, and all other sorts of things that come with those. And so, we can look at just why are we having these thoughts and then believing that this is something wrong with us, because we think that way. When I look at ‘em within the research that I do within how we in our neuro type experience burnout, and I talked about the warning signs. One of the warning signs that comes up in all levels of burnout from level one poblano pepper all the way up to that level five ghost pepper is that suicidal ideation and those feelings of worthlessness come up. And it can be really scary. They can be a very scary place when those thoughts pop in your head. And you're then you're almost taken aback like, wait a minute, why am I thinking now? Why am I feeling that, and you will, you're in alexithymia and, and processing time differences and all sorts of things that we experience. And this can be sort of like the perfect storm. And it can be a very lonely and scary place to be. First of all, I want to tell you, you aren't alone, even though you may feel it. You have a community that does understand and is here to support you. Please reach out to one of us please reach out to someone local, talk to someone. And then when I say talk, I mean you can text them you can however you want to communicate. But within that I also want to bring a level of awareness to the fact that in all of us had over a million people in the last few years in 93 different countries participate in this research. And it goes back to the real heart behind those thoughts is not that I actually want to take action, you know, that does happen. So, I'm not saying that doesn't. But the original feeling is I just need things to stop, I need to hit pause, I need relief from the demand, the overwhelming feeling that I do and admit so much. And I feel like I have nothing to give my energy tank is not just empty. It's not just running on fumes; it is now starting to suck in because it's being drained beyond its capacity. And understanding that about that escape that parachute that our brain goes to, and knowing is not you.
Yeah, I totally agree. Scott, did you catch up with that?
Dr. Scott Frasard
Well, I was just gonna say what you that last thing you said, trigger my memory about the other thought that I had, which is suicide. Is, is like, it's the last resort. We've tried every other avenue to alleviate this distress that we're experiencing. And again, this is just one of my, my personal perspectives about suicide is when we talk about, we've got to end suicide, we got to stop people. But we're not addressing the other part of why have they been pushed to this point. We're also adding insult to injury by criminalizing a suicide by shaming it by telling people you shouldn't want to have to die or these sorts of things. We're now removing agency; we're taking away their decision to have control over themselves. And I think that's inhumane.
I agree. Yeah. Well, to finish this particular matter off, I'm just want to tell my audience that's coming on September 3, Lisa Morgan is coming back to talk about Suicide Prevention for Autistic Adults. Lisa Morgan is the perfect individual to talk about this because she has dealt with suicide in her own family and in herself. And she's created this momentous work about autism crisis support. As we sit as we say, you know, the thing is, is when you're realizing who you are, and you try to talk to people you have, well-meaning people who just who unintentionally harm you, and it's so difficult to work through those things. My last piece of advice as we get ready to close this out is to say that, no, you are not alone. There are many other Autistic people such as yourself, you just have to kind of sort of find the resources as to who to reach out to. And in doing so I want to direct anybody who is having any problems. Any situations that you need to need to work at work through, please go to my Adult Autism Resources Links page where I've got over 100 different links where you can find something someone, you can find Carole Jean, you can find Lisa Morgan, you can find Becca Lory Hector, you can find whomever you want to find. And please go to those, those resources and search around. You know, and the thing is, is that I think both Carol Jean and Scott can also understand what I say when you do discover that you are Autistic, you kind of need to start building your own social support networks of people who are like you and I agree, they're not the simplest to find, but I know where you can find him on LinkedIn. Anyway. Um, anyway, that's just one of those places where there's so many of us on there. And I think I've come to understand why and that is because on LinkedIn because it's a social network that works on professional relationships. We don't exactly have to worry about all the negative commenting that often appears on Facebook well past what we can usually take. So indeed, do look those up. First of all, I want to say thank you to both back to Becca, Carol Jean, and Scott for this. But I'd like to end this by saying to those of you who have not gone through the process of being going through a diagnosis and/or identification on we do have a crisis in this country of, of, of clinicians who can do the diagnosis we have, especially for adults. We do have a crisis there. And yes, the broken medical system is not medical care system is not helpful there. But there are places where you can do some self-diagnosis, there is no shame in doing a self-diagnosis, we want to make that clear. And the thing is, is that, you know, you can find those resources. As I say, my Adult Autism Resources Links page was one of them. Carole Jean has this magnificent Mind Your Autistic Brain. There is our good friend Jaime A. Heidel, The Articulate Autistic who can give you more than many answers. But you know, we both know, we all know, Jaime A. Heidel, who, who's just a mountain of information. But the thing is, is that, um, I think, in finishing this out, you have nothing to be ashamed of, if you're discovered, you're Autistic, there is no shame in that. There, the only thing that is shameful to be quite blunt, is the fact that society looks at you as a medical disaster. Okay. One of the goals of Today's Autistic Moment, and those of us who are working so hard, is that we want to make the clear statement that we are not disordered, we are not really sick. We are not poor little things, and I'm sure both of you get plenty of that too. But you know, the thing is, is we do have strengths, momentous strengths and abilities that are often downplayed, unfortunately. But I can also speak for myself, and I'm sure the others can too, when you do arrive at a place, wherever you've accepted yourself, and where you have a grip on who you are, you will find a happiness and a self-energy that you never knew you had. I think both of you can agree on that. So yeah.
Carole Jean Whittington
Awareness is empowerment.
Absolutely. Absolutely. What are you gonna say, Scott? Go ahead.
Dr. Scott Frasard
I was just agreeing. It's very empowering.
Yeah, I agree. So, with that, I'm gonna say thank you to everybody for being here today. And wow, what a great discussion and I can't wait for the responses of our audience. So, thanks so much.
Transcribed by https://otter.ai
Today’s Autistic Community Bulletin Board
All of these events with their links can be found at todaysautisticmoment.com/bulletinboard
Join The Autism Society of Minnesota for their Adult Coffee Club. The next Coffee Clubs will be on Tuesday nights from 5pm to 7pm at Dogwood Coffee in St. Paul on August 8th, August 22nd, September 12th, and September 26th. Coffee Club meetings will be at the Milkweed Café in Minneapolis on August 14th from 5pm to 7pm. Please RSVP at ausm.org.
Understanding Autism virtual classes will be offered by The Autism Society of Minnesota. These classes are perfect for Autistic individuals, caregivers, those who want to understand the basics of Autism and support Autistic people. Classes will be on August 21st from 2pm to 4pm. October 23rd, 6-8pm and December 18th, 10am-12pm. Classes are free of charge, but you must register to attend.
Registration is open for the Fall classes for Autism Direct Support Certification at The Autism Society of Minnesota. The certification is especially helpful for Autistic people to better understand themselves. I took these classes in 2018 and it helped me to better understand myself and other Autistic people. These classes are ideal for job coaches, support staff, Personal Care Attendants (PCAs), EIDBI Tier 3 providers, Educational aides, direct support personnel, Group home staff, Day training and habilitation professionals, and anyone who works directly with Autistic people. Classes will be held on Fridays beginning at 9am to 12pm on September 15th, 22nd, 29th, October 6th, 13th. Please register soon for these classes as they fill up very quickly.
For more information about activities, education, and training opportunities at The Autism Society of Minnesota go to ausm.org
You are invited to Minnesota Independence College & Communities’ 6th Annual Independence 5K Run/1 Mile Walk on Saturday, October 1st at Donaldson Park in Richfield, Minnesota. Check in/Registration will be at 9:00am. The race/walk will begin at 10:00am. Go to miccommunity.org for more information.
Matthew the #ActuallyAutistic Coach has room in his Finding Your Autistic Self Group Coaching Groups. In the groups, participants learn about unmasking strategies, coping tools, burnout & post-burnout support and much more. Go to autisticcoach.com and click on Autism Groups for more information. While visiting Matthew’s website, be sure to check out the Free Autistic Discussion Circles for Autistics of various age groups, careers, students, and ethnic groups.
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