It's also the lifelong frustration of people constantly asking you how you are or how you are feeling today and then you try to explain and their eyes glaze over or they accuse you that there seems to be always something wrong with you. I still do not understand why everyone keeps asking how I am and they really do not want to know what is going on because there IS always something going on or bothering me. It drives me absolutely crazy.
Exactly! I would rather have nobody asking anything than having them ask all the time but never wanting to hear an honest answer! It's as if they keep asking until they finally get the only answer they want to hear: "Fine. And you?"
@@tihana13it is extremely frustrating!! They dont want to know ... And who of us can afford to be aware of how we are, today, when we are in public?? We are already in overload. Do we need to be shoved into feeling and awareness of our pain mode, too!!??? No!!
I usually respond to "how are you?" type questions with: "I am". It's funny to see. If they inquire further I can try to point out specific, or ask them to further specify their question. "What part are you curious about?", "How specific do you want to know?", "For what reason do you want to know?".
It took me until my late 20s to realise that "how are you?" is basically the same as "hello". The vast vast majority of people are not actually asking how I am and it's more of a greeting than anything.
@@Zayaxa It's not 'just' hello, often times its more complicated. Sometimes it also means: "What is going in in your life recently?". Often times they are genuinely curious to how well your recent life has been progressing, but they rarely mean that they care for the 'whole story' at that moment. Which is frustrating, because either you can overblow them with details and speculations, or completely miss the points where someone would genuinely appreciate and want a large info dumb on your life in "how are you?". At least, that's how I tend to view it.
Just learning that I probably am autistic, at least I have a ton of autistic traits. Now when my husband or kids ask me, 'How are you feeling?' I allow myself to stop, see if I know how I feel, and if not, I just say, 'I don't know.' What a relief. No more making up an answer.
Alexithymia is a hell of thing. Explains what I once thought were panic attacks and a lot of other overwhelming physical experiences that were tied to emotions I can’t name. All my shrinks and psychiatrists missed it AND my autism. So I fired all of them once I got my diagnosis. We are truly on our on with this folks. Thank god people like you have the energy and courage and skills needed to post content like this. Thanks!
I think there are more emotions then those that have a name in language. Mixed states. Supressed emotions. Emotions that are misidentified by ourselves or others. Motivations attributed to us. Emotions that need to be worked out or worked through but there us no time or ocasion to do so. For exmaple because before tou zan do so another emotion show up to take our attention. We get an emotional backlog of unresolved states. And people wonder why we burn out.
I accumulated dozens of notebooks worth of emotions, and I was complimented on my level of self-awareness and problem solving by the one councilor who was actually interested in reviewing some to get a better understanding of me. Sadly she had no experience and probably next to no education on autism. Fantastic person otherwise.
When people ask me how I'm doing I say, "upright and above ground!" or "I'm on the right side of the dirt!" They laugh and I get out of having to say anything else. Woohoo!
I have had to learn to count my limbs. I still have them all, and count that as the win, and say, good thanks, i stead of getting stuck in a full body scan, which is even more overwhelming.
One thing that comes up a lot for me with empathy is that I either don’t know the “appropriate” way to respond or the “appropriate” way to respond is uncomfortable or otherwise difficult for me. The empathy is there, but I may be thinking, “is it appropriate for me to ask a question that may seem probing?” or “Do I have to hug for this?”
Oh god yes.... I never know when people like want a hug when their sad and stuff like that. 😑 That's why I told my very close friends to just blatantly tell: I need a hug. That solved a lot. 😅🙏🏻
Oh, i can name the emotions / feelings, but i cant always feel my feelings, emotionally. . I mostly think them or have them in my body. But i rarely feel my emotions emotionally, even though i look and sound extremely emotional. Body reacting. Feelings not feeling. So frustrating. Eg. Anxiety often makes me look very calm. Used to get told that i "exude peace"... I had no peace. I was screaming inside. But my face was very still.
Your noting that you can’t always feel your feelings caught my eye, because it implies that sometimes you can. I also have an inconsistent ability to feel and also interpret my emotions. I noticed this sometimes in my late teens - if I experienced emotional flooding, for a few hours afterwards I would be able to sense and process my emotions. It’s like the big emotions opened a synaptic pathway that is normally inactive. But after a while it would fade out again. Same thing with emotional attachment: I will occasionally have a big burst of (usually sad) emotions about my relationship to someone, and for a bit I can tell that I care about them, and even show it. I’ve tried to hold onto that, and occasionally have succeeded for a while, but it always fades too. Once it’s gone it feels like it was never there. I don’t know why I am like this. My best theory is it’s a combination of alexithymia and ADHD object permanence troubles.
It’s the oddest thing, to have an emotion in your body, know it’s there, see it affecting your behavior, but not be able to feel it!!! How does that work anyway? Deffinatly shouldn’t be a thing.
What you describe sounds oddly relatable. Am nowhere near a diagnosis, just focusing on the autism topic and being in therapy for c-ptsd. But in my last job as an vet‘s assistant, I always got told I seem to be „calmness in person“ when I was raging and being in agony inside.
I relate to feeling anxiety inside and internally screaming but people think I’m calm and at peace. And they wouldn’t believe that I’m anxious and almost out of breath because I don’t show anything on my face or body.
At some point after I started really researching autism as a probability for me, I came across alexithymia for the first time. It was like a revelation. Decades of not being able to do much more than shrug when my wife would ask “how do you feel” during “talks”. It was so frustrating for me; I can’t imagine how bad it was for her (to her credit, she never once made me feel bad for it). I sent her the Wikipedia article with the comment “there is a freaking name for it!” Your description of the intense, fast-changing emotions is also spot on for me. There is SO much going on that I can’t even begin to process it, much less put words to it.
For years, whenever my husband and I would have conversations about what was currently making me emotional/upset/confused, he would ask what I was thinking/feeling about something, and I would always have to answer "I don't know" before I could begin to put anything into words. I wonder if that was because it took time for me to figure out what was going on inside me, and I felt I had to say something as a stop-gap measure, instead of saying nothing for too long while I was getting my thoughts in order. I for sure was shocked a couple of years ago (after working on engaging with my emotions in trauma therapy) when I recognized a particular feeling and realized I had labeled it as multiple different emotions over the years, including opposite ones, such as fear and love!
It's like when you want to post a comment review on a great audiobook you just finished and you're overwhelmed with emotion... impossible to communicate in words and you resort to ⭐⭐⭐⭐⭐ (stars) only... BTW, thats how I feel about this video 😮🙋🙂
You found a good description for it and I regularly feel like that as well. Thank you.😉 And yes, 5🌟s for the video. It’s like adding a new sauce to the big brain salad. ❣️😁😉 At least that kind of feeding ourselves we think of regularly.
OMG this is perfect. Especially the review part. I be trying to say something different then get overwhelmed and end up putting something similar. Then I get mad at myself for not being able to say more of what's actually in my head. Then rinse and repeat the overwhelming....
I have delays in feeling emotions, and confusion over the emotion I am feeling. Sometimes I'll have a lingering feeling buzzing around my head, usually stemming from something that happened days prior, with no idea how to identify it. The gap between the inciting incident and the emotions adds to the confusion. Also oftentimes the only way I can describe the way I feel is with simple words like bad or crummy, or I cam describe the facts of a situation but not the emotions. The emotion grows and becomes more debilitating, keeping my thoughts in a loop, but the worst part is the frustration that comes from being so confused all the time! The world has moved on but I'm still stuck wondering whether I actually am upset about something that happened 3 days ago that I said wasn't a big deal at the time...😵💫
I was in the dentist office and she was pushing on my teeth after also getting mad at me for not using my drops to dry my saliva, I had so many overwhelms going on at once - she asked why I was crying and I had no idea what to say!!! I said my teeth were hurting bc it made the most sense at the time. She got even madder bc “it shouldn’t be hurting” she left the room bc she was mad. I told the hygienists I was upset bc she was mad at me. It was just a mix of everything!! I had no idea how to explain it I could only cry. Then I found out about autism….
If your dentist gets angry at you for crying, go to a different dentist please. Medical personnel need to be able to handle uncomfortable situations without reacting emotionally. I wouldn’t trust their other abilities if they are getting the basics wrong
When Ricky from Trailer Park Boys said "sometimes I don't know how to express myself when I'm trying to be properly different", I felt that, I know it's a comedy show, but that's how I feel in alot of situations
@@Observer31 I always thought something was going on with Ricky, alot of things I see how he reacts and it seems like the way I'd react to the exact same situation
Or lying ... do you ever get that? People think you're outright lying when you don't know how to express what you're feeling? Even when I try, people either think I'm lying or they simply dismiss what I'm saying. Ugh! One day maybe people will better understand autistic people like me.
I have gone to therapy and had a person try to teach me my emotions. I had no clue I am autistic and now realize it includes this so going through that therapy has caused more problems for me than good. Sure, I can recognize when other people are displaying emotion and identify it, but I cannot do it for me, the main person who is struggling!
Have you heard of IFS (Internal Family Systems) therapy? It's a framework for understanding and interacting with your internal landscape, and I've found it to be very helpful in becoming aware of and engaging with my emotions, in an internal felt-sense sort of way. Dr. Tori Olds has a great intro series to it on youtube.
You perfectly encapsulated my issues with the pain scale! I had bilateral back fractures and a protruding disk I was dancing through. When asked where it ranked on a pain scale, I said a 5 or 6. I was told that there was no way I could be dancing through back fractures (or ranking the pain so low). Welp… they were wrong!
I have any similar problem, the way I explained it in my head was that the pain scale is logarithmic, 6 is not double of 3, it's way worse, And when they ask you to describe the pain, it feels like explaining color to a blind person
I either have too much empathy or too little. And this is complicated to explain too, but the easiest way I can is that... when I have the energy to emoto and chat, empathy seems too be so strong, that I get physically and mentally wiped out afterwords. At that time because I had the energy I put myself so literally in the other person's shoes that its almost like my body experiences The Phantom of feelings that person in question would have experienced. On the flip side, if I am low on mental and physical energy, then my brain just doesn't do empathy so strongly. I can't quite put myself in that persons shoes as "intensely" as I have before or with others...its like my brain refuses too brain😅. Chatting becomes incredibly hard for me as well then, as I just don't have the mental capacity to figure out proper responses or questions to ask the individual I am speaking too. Its a frustrating thing all around for everybody than I have noticed...😶
You have emotional empathy, not cognitive empathy. You dont put on another shoes, you understand their feelings but xannot understand or will missinterpret or distort why they feel that wey. That is how autistic brains works
I've been struggling to find satisfying objects or toys to fidget with, and I'd watched one of your videos and you mentioned the NeeDoh cube... I just got 2 of them today, and OH. MY. GOODNESS. Thank you for your videos ❤
Aren’t they amazing?! What colors did you get? Glad you like them as much as I do! I just got the Nee-Doh Gumdrop and it’s also awesome - in case you go for another one soon 🤣
For real, I legitimately never know what exactly I’m being asked when people say “so how was…” or “how did you feel about…” so I ALWAYS have to clarify “what part of…are you asking me about?” My mom does that a lot and I constantly have to ask her to “be more specific” with the question because I’m like, “idk I’m still alive and breathing so it must not have been that bad *shrugs*”
I’ve suspected my 29 yr old son is autistic since a baby. And sought help endlessly from all professionals. Everyone in my medium sized community said he has ADHD. But that didn’t explain all of the other symptoms like you’ve described in your videos. He matches those traits exactly including Stimming by backwards hand waving constantly as a toddler. Due to his issues including ongoing gut issues, he has a hard time keeping a job or a relationship or paying bills, etc. He is Highly intelligent and therefore people think he’s just lazy. He is such a giving, good hearted person who has learned to MASK very well including Fake Smiles. How have you managed to keep a job, have a relationship, schooling, ? Best wishes, Mom of yet undiagnosed Autistic Son.
Sounds like you need to outside your own community to get him diagnosed. Then you can get him support accordingly. He may very well have both adhd and autism, the combination is common. (If a doctor says it's either or, he's outdated by some 10 years.) I have managed to get educated, work and have a relationship. But not all autistic people are. Many have neurodivergent partners, because empathy and communication work better that way. I know many need some accommodations in school. A work the choice of work place is very important and part time may be a good option.
Growing up, fear, anxiety, dislike or aversion were inconvenient for mom who said that behavior was not allowed or unladylike. Liking anything mean sharing it or losing it completely to the golden child. Happiness when not felt also by mom was annoying. Blank is good. 11 years of school photos without expression. “More trauma on average.”
@@jliller little girls, afraid of spiders, afraid of going to a(nother) new school. Afraid of the dentist, afraid of jumping in the pool… a little kid with proprioceptive disfunction freaking out at floating stairs and totally alone without a nurturing adult. “I don’t have time for this.” She was absolutely positive I was doing it for attention so she wasn’t going to give it to me but she couldn’t walk away and abandon me without being a bad mother. Laughable because the entire goal was to avoid her attention.
i struggle to realise I'm having certain feelings but not with describing them once I've figured them out. Art has helped me practice this process. journalling too. people have been an unreliable audience because the jump to conclusions halfway through a description so I'll write a short passage/letter/poem where the language has to be super concise but can also be a bit weird. Then all of it is in one place without interruptions. same with sketches of figures on paper or in clay. the sensation is visible as a whole
I'm undiagnosed, but have some neurodivergences. And some autistic indicators when I was a child, that weren't pursued, because I was verbally and academically precious. I definitely have anxiety and difficulty with interception and alexithymia. I need to watch your video about over-empathy. I have trouble naming my own emotions, but I mirror and absorb others emotions. And get sympathy pain when I see an injury, that's like prongs stuck into my back then electrocuted.
So " Sucks" is one of your stim words. So funny! I love it. I recently realized the alexithimeia factor in me, so I'm still trying to get it about me. Oh, but it is a new special interest. It seems that there is a delay. It feels like I'm holding my breath under the typical world water and waiting to be in a safe space to feel feelings and look at them for an accurate name. I think it is the typical world that needs the broad words for them. It seems like anger or joy might be a category. Like there are 70 names for ice in the Iñupiaq language, there needs to be many words for the different kinds of anger and joy, etc.
Woah so true, I know in some languages like German they have different elaborate sayings for things like love, hate, joy etc. I agree I wish with all human language we had even more in depth words to describe these complex emotions
@@L1vRosie I like to say our first language is pure thought and emotion, and the language we speak is actually our second language. Once I decided to just draw what a burrito tasted like. Soft flowing lines on bottom for the tortilla that supports the whole thing. Sharp jagged shapes that stretched through everything for the cheese with the taste that powerfully stands out. Complicated detailed compact forms for the seasoned meat. I've noticed that some friends will say they love each other, and others won't say that. Because some languages have so few words for different types of love. Some people adapt to that by just using the word love to mean all of them, but others reserve love to mean one specific variety and then end up with no way to express their fondness for people they care strongly about in those other ways. Non-words can help, but they also get lost in translation, like no one would know what my burrito drawing meant without me explaining it to them...
I've once explained why I'm constantly tired to a non-autistic friend as follows; Imagine there's a person with you at all time, 24/7. No he won't be gone when you're going to sleep. Only you can see the person, and the person is constantly screaming, all the time. 24/7 just 'AAAAAAHHHHHHH!'. Sometimes right into your ear, sometimes from the corner of the street, but most of the time the person is within reach. Very rarely the person is quiet for a minute, but will start again without warning, and you can't do anything to make the screaming stop. Wouldn't you be tired? Try to explain to people the reason you're behaving 'weird' or different, is that there's an invisible man following you around while constantly screaming, everyone will think you're crazy.
Just realised that I do have autism, but I don't have this. It sounds baffling! It's good to know about the experience of those who struggle with alexathymia, thanks.
I'm happy that you found out . When you're a late diagnosis, it's amazing to finally know yourself . Always keep in mind that us autistics are not expecting it the same way. I get sad that it's like this, but it's also incredible and fascinating.
Thank you for this. It can be so hard to sort out feelings. I think of myself as a person who is pretty in touch with what I feel, but I still have times when I have no idea what is going on with me and it can last for weeks. It’s like my brain flat lines
This was all very relatable. First let me say that yes, I eventually realized that being persistently tense had a lot to do with my developing debilitating trigger points in my lower back by my late thirties. I’ll also note, for anyone who doesn’t know this, that in fight or flight, the amygdala and the sympathetic nervous system suppress higher thinking by design; this is so someone can respond very quickly to a presumed “tiger in the bushes” - or slam the brakes on without thinking if the car in front of them stops short. It’s not well designed for perceived emotional danger, because you can’t think straight. It’s also hard to understand inner feelings, because the amygdala is determined to find external threats. So there is really no choice but to come down before being able to process, much less respond. This physiological reaction happens to everyone sometimes, but much more for those of us with overactive amygdalas. The meltdowns that you describe are probably most common with kids, but I can vouch for adults getting them too. And in fact I think mine mostly manifested in adulthood. This may be partly because my mother let me withdraw a lot as a kid, and when I did start melting down as an adult, my wife would press me to respond when I could not. As you say, this doesn’t work and in fact made things much worse. At this point, I think there is a reasonable likelihood my wife is autistic too, and I am now aware that the double empathy problem is not strictly a NT-ND dynamic. Learning about different types of empathy opened my eyes to this: I have mostly emotional empathy, and I mirror other’s emotions. I can do some cognitive empathy, but the over strong emotional mirroring makes it almost impossible for me to practice compassionate empathy: instead of expressing sympathy, I freeze up or one-up. My wife is more compassionate, and wants to deal with the problem. So I can give her space, but not the comfort she may be seeking, and she can give me comfort but struggles more to give me space. This tracks with common gender roles (men apparently tend to respond to stress using avoidance, and women by seeking emotional support). One way in which autism may worsen this is that I think we both have a harder time changing our habits than some. That we both clearly have alexithymic traits doesn’t help. What I discovered when I went over an emotion wheel is that I struggle with emotions in general, especially the subtler ones. Some of this is that my emotions are very big, so for example it’s hard to distinguish embarrassment from shame. An overactive nervous system may be one reason it’s hard to distinguish emotions and sensations. I have poor interoception in some areas, but physical sensations in my brain and parts of my nervous system come through very strongly. I’ve had hypothymia and varying levels of depression most of my life, so I found I was not too bad at identifying negative emotions, but almost blind to positive (happy) emotions. I imagine the anygdala plays a part in that as well. And I’ve recently realized that I taught myself to not get my hopes up, because disappointment, like frustration, hits me very hard. Some thoughts (of many). Yes, my brain is always running full steam! And ADHD limits my ability to determine if the ones I choose are relevant or not. Hopefully some are!
I have multiple family members that are on the Spectrum, including myself. My mother has never been diagnosed, but I strongly suspect that she is. When you brought up the example of the mind never stopping, it made me think of this unusual ability that my mother has. When she is faced with a problem she can't solve, she will often come up with a solution in her sleep. For instance, despite being in her mid 60s, my mother managed to move a 500lb front end loader tire by herself using only ropes and a few items from around the house. She devised the entire system in her sleep, and put it together when she woke up the next morning. She does that all the time. She says that she just has to think about the problem before she goes to sleep, and it will come to her by the time she wakes up. She has managed to come up with some very creative solution to problems in her sleep.
I hate being asked how I am or how I'm doing because I quite literally do not know. Usually, when I get asked this I'm not actively feeling anything, I'm just existing. I have to really look inside myself and study my feelings to determine what it is I'm feeling, and most people just don't have the time or patience to wait for me to do that, so usually I just say I don't know. If it's just an acquaintance that I happen to run into out and about and they ask me "How are you", I just give them the standard answer of "I'm fine" even if I'm having a terrible day, because they don't really care how you are, they just want you to respond with "fine" and ask them how they are, so they can tell you about everything wrong with them and you can nod along and say "that sucks" and give them comfort. At least that's what I've noticed whenever I talk to someone. I've tried telling them how I really am a few times, but they just give me a look that says 'Why are you telling me this, you were just supposed to say fine so I can leave or tell you about my sucky day'. I don't really know if this is due to autism in regards to me, I've never been diagnosed officially, or if this is just from being emotionally repressed my entire childhood because my dad would yell at me if I ever displayed any emotion he didn't like, basically anything other than happy and smiley all the time. I just figured it was because I learned to close off all my negative emotions and feel everything internally without it showing on my face, that now I just can't feel or express them properly anymore. I don't think I'm autistic though, maybe I just have a couple autistic traits or am high-functioning, there are a lot of other autistic traits that I don't have any problems with.
Since learning about this I have a new peace and, indeed, a sense of new power and prerogative, when it comes to "being in touch" (according to an external...which means essentially WRONG...assessment) with my feelings. How may times, agonizing times, in my life have I been made to feel incompetent, inadequate, suspiciously evasive ("What are you hiding?"), because I haven't been able to produce a satisfying "blurb" detailing my inner life--you know, like a press release from the White House--for those who think "the people have a right to know." Since my autism discovery a year ago I sense a miraculous new peace and freedom from any such responsibility now. There is no such thing as a default right to know. My world of feelings, both emotional and physical, works on its own terms, and if those terms happen not to be what the world considers "terms" (i.e., words), well, too bad! Perhaps the most powerful phrasing that has come to my mind, when it comes to negotiating such "examinations" in social settings, when an affective-cognitive signal or affirmation is presumptively required of you, is, "No, that's not the way I think." Simply to state that I don't put things together the way it's being assumed of me. That's all. Your question doesn't relate to who I am. If you would like me to try to express how I see things and what they mean to me, I'll be glad to try, but it's not going to be a snappy, quickly digestible answer on your terms. Well, that separates the men from the boys, as it were. Real friends will be interested, and as for those who are not...I guess that shows why the conversation was never worth pursuing anyway! We need to fully seize the power and freedom inherent in two things: silence (when we simply do not care to talk about something), and answering in our own real, authentic terms rather than on an imposed template. Everything in the middle, i.e., a frantically scrambling answer rigged to mirror the foreign constructs imposed from without to placate a social demand, when you know in your heart none of this is real and you feel like an accomplice in your own violation, well...that's for the birds. Silence, or answering authentically, one or the other. That's peace, and freedom.
Thanks, Ken, I agree completely. My succinct statement (not as eloquent as yours), to neurotypical linguistic convolutions or questions, is "I don't understand." Then, I look for them to explain it differently (which tends to surprise/ throw them off, while they search for alternate communications)... meanwhile I process internally ...eventually we reach a point of mutual communication (usually). This works especially well with friends, and sometimes medical personnel.
Before my diagnosis, my psychologist thought my lack of emotions was due to trauma. Whenever she asked me about feelings and emotions I just tell her it’s flat. I don’t feel overly hypo nor do I feel down, it’s just flat. When she told me to tell her three happy memories I couldn’t come up with any. I told her, what is the threshold for “happy”. How do I know if that’s just joy, content or is that happy? Now, I noticed for me, it’s like a button. Once someone tells me that my behaviour tells them I’m happy, I start to notice when I do it again. I actually have to have people around me help point it out to me how I’m feeling.
Knocking yet another great video out of the park Chris and Debby!!! I so very much appreciate how you are candid and humorous and dropping knowledge bombs with kindness and grace.Please keep it up and know - I just think the world of you both - you're helping me and so many others!!!
0:49 I'm really glad the definition of alexithymia includes "sensations" and not just emotions. I've heard it talked about as not knowing what you're feeling (emotionally), but often I don't know what my *body* is feeling -- is it hunger or nausea? My hunger has an On/Off button: I go from not hungry (zero on the dial), to suddenly famished (1000 on the dial). There's not much in between. And Hungry 1000 can be that nauseating hunger when you start to feel faint, though not all the time. Sometimes my alexithymia can be other pains/discomforts in the body, and "pain" for me is at a very low threshold. Paper cuts are at what other people would feel if they got a deep gash. The same is true for emotions. Years ago I had myself tested to see if I was bipolar because I couldn't understand why my emotions were either REALLY HIGH!!!! or *reallly lowwwwww*, and could go from one to the next in an instant. (The testing was negative. Testing adult females for autism was not even on the radar back then.) A few days ago I had to fill out an online intake form for an appointment with a medical practitioner, and one section of the form said, "This exercise will serve to display how you feel about varying aspects of your life. Please rate the following aspects on a scale of 5 (very happy with)- 1 (not happy at all with)." It had items like Joy, Social Life, Home Environment, etc. That scale just didn't make sense to me. There's no *context* for the numbers -- and like Chris says in the video, it's changeable, sometimes from minute to minute! And what might be a 3 to me might be a 5 or a 1 to someone else....how is this useful? One of the items was Career -- I'm retired. What do I answer? I *hated* the day jobs I used to have....but now I don't have to go to that torture anymore, so I'm very happy about that. Do I answer 1 for what it was when I had a "career" (which it WASN'T -- it was a day job, aka daily slave-torture, and nothing more), or do I answer 5 because I'm happy now that I don't have to go through that anymore? These types of questions are so typical of neurotypicals who create these questionnaires and intake forms, never considering that such questions are meaningless to neurodivergents like me.
this is so validating, thank you!!! actual tears rolled down my face to have these issues put into words after so many years. i’m undiagnosed but thinking i am also AuDHD and it’s just.. exhausting
@@jliller can’t do it. As a kid, I kept a journal. It was secret because I had 0 personal space and a snoopy sister. One day she found the hidden journal, broke the lock, shared it with her friends, and tormented me about what I had written. I thought my mother would defend me. Nope! She scolded me for “keeping secrets.” I’m still uncomfortable writing down my feelings.
@@silverlagomorpha3177 The lesson you learned was that you're uncomfortable sharing your feelings. The lesson you should have learned is that your family are shitheads.
Alexithymia is completely debilitating for me. I find my lack of capacity to identify, process and cope with my emotions to be the single most disabling aspect of autism, and I'm at a loss of what to do about it. I have a bunch of strategies that help me to manage okay for 2.5-3 weeks out of the month, but PMS (possible PMDD?) devastates me for the remaining 1-1.5 weeks, and every month it takes me to the verge of burnout; holding down my job at this time is about all I can do, and even that is touch and go and leaves me with nothing left. It feels like no way to live. It's certainly not sustainable.
If PMS is so bad for so long, I think some help with the PMS itself might help your life quite a bit. If you haven't discussed it with a gynecologist yet, I suggest you do. It would leave you more energy to deal with everything else in your life.
Recent research shows that autistics process on average 42% more info for every sense. That’s enough to cause ptsd and create alexithymia as a protective measure, did for me. So I’ve had to learn how to feel my emotions by the electrical/warmth sensation in my brain and create a map of my brain and where my emotions show up
This is relatable for me, but not to your extreme. I'm aware of my feelings in a general sense, but I suck at expressing them or putting words to them for others. It makes things difficult to convey. Like when I'm in extreme distress and having a meltdown the most I can muster to express this is "I'm sorry". I guess I know what this is now. Thanks for the video
OMG the 1-10 scale of pain thing drives me INSANE. If it was 10, I’d be incapacitated so we wouldn’t be having this inane conversation. If it was a 1, i wouldn’t be here. So … OBVIOUSLY it’s bad enough that I went through the hell of setting up this appointment and dragging myself here against my own will and am now trapped here in this tiny,bright, obnoxiously smelly room wondering when the baseboards were last cleaned and thinking of strategies to deal with all the things that might possibly assault me while I’m here (blood pressure cuff torture session, touching that crinkly, slippy paper covering the dodgy examination table, how to get up on that table without falling, having that horrible mouth drying tongue depressor stuck on my tongue, gagging me, having that piercing light shone in my eyes ….) ….. Everything between 1 and 10 is a mystery to me. As compared to WHAT? Can we have a demonstration of each number that I can contemplate for an hour and get back to you? Augh. What a freaking nightmare the medical system is. And on top of all that, I’m trying to work out what the right answer is. If I go too high on the scale, am I going to end up having to endure a gauntlet of torturous appointments with aggravatingly unhelpful specialists? Will there be numerous appointments to labs I will have to figure out how to get to in parts of the city I have no knowledge of? If I go too low, will you just send me home and tell me to relax and maybe sort out my diet for the 10,000th time. There’s no tweaking left to do. I have tweaked the ever living life out of my diet. I practically have a PhD in nutrition at this point. I could probably tell YOU a thing or two or a thousand about nutrition and its effects on every aspect of our complex system. Want me to fill you in on magnesium and Vitamin D, all the latest research and why this one paper was garbage and that one was intriguing?
@@ChrisandDebby Hahaha😃 The second you mentioned that 1-10 scale and those damn circle faces, I hit pause and BAM, out it came 🤣 I’m really glad it made you both laugh. Maybe I should … I tend to leave what are surely startlingly long essays (see above as evidence) about arcane topics loosely related to something someone mentioned in a RUclips video (I mean, who wouldn’t be fascinated to learn everything there is to know about the physics of light in a youtube comments section, for example) and I don’t think they’re as appreciated (or, admittedly, always appropriate) in that context as much as they amuse/satisfy me to leave … I’ve been thinking maybe I should do exactly that: start a blog. Thank you for the suggestion and the response 😃🌸
Hi, I have ADS (and probably ADD), Alexithemia and poor interoception, so I used to find the 1-10 pain scale hard to report on. But I have made breakthroughs in this that I want to share with you (or everyone). I found kidney stones were really useful to help calibrate my 1-10 pain scale. So now I can just consider how far I am from vomiting on the floor from the pain, on a scale of 1-10. And I tell the medic "I've had kidney stones, this feels like a 5." (Ambulance officer said, helpfully, it's the male equivalent of childbirth for pain, female friend who's done both agrees, so I'm using kidney stones as a unisex pain sample point) I'm not advocating going out of your way to get kidney stones, but most people have broken a bone at some point -- a nice solid 5 or 6. So you can reflect on the excruciatingly physically painful parts of your life and use them as a reference. I'm not advocating you breaking a bone on purpose to get a calibration point. My rule of thumb: it's not over 3 till you can't hold the winces in. (So I guess you could say 3 is like being kicked painfully, unless it was somewhere REAL painful, which is more like a 6, because falling over and almost vomiting?) Glad to have helped!
Thanks for your video's, they are helpful making me understand myself a tad better. I recognize the struggle with putting words to emotions after a lifetime of masking, like you, I'm also 40+ and diagnosed with autism in the 80's, never got the help I needed then because little was known yet. I extremely rarely get real mad and when I do, I timeout myself and get away from the situation and return afterwards.
I grew up being beat and screamed at for having emotions. Or ignored unless they happened in a public space where my parents might be judged. Then I would either be placated or demonized. Or my mother would just tell people I was on drugs. So of course I tried to bury any emotion.
Thank you for the nuanced discussion on empathy and alexithymia. I am Dx’d with alexithymia and functionally I do not experience or perform empathy (seriously, telepathically understanding others’ emotions? when I don’t even understand my own?) but as my assessor said, it is a result of alexithymia and not a matter of not caring.
Alexithymia is something I've wondered about myself, but don't think what I experience is the same. Unless I have extreme feelings - usually anger and/or pain, I "think" my emotions. Even that's not accurate. Someone tells me their mother died. I "think" grief. I know I "should" feel grief. But I "think" it. Grief is a thought, not a feeling. Does this make sense? I'm a very talkative person. I've recently learned many autistics are talkative even though that doesn't fit a stereotype. I just want to discuss thoughts and ideas. In spite of lots of words, when you talked about trying to tell a doctor what's wrong, or on a scale of... I really identified. That's about myself. I took care of my parents 24/7 for 24 consecutive years. It was easier to identify their pain/feelings than for me to identify mine. Another description for my stuff is being on the outside looking in. That's how much of my inner and outer life is - I feel disconnected, always on the outside looking inside. The idea of a person who's died and hovers above their body, seeing themself from the outside, before returning to their body, is the best description I can come up with.
If it’s of use, some of what you described, especially toward the end, reminded me of dissociation. A number of commenters on one of Orion’s recent videos talked about spending much of their time in a dissociative state. Sometimes I think I have too, to a limited degree. I have also experienced acute dissociation, and I didn’t figure out that’s what it was for some time. There were parts of what you said that definitely resonated with me as sounding like alexithymia too. What I and others have described is, when we talk about what we feel, we talk about what we think. I might say I feel like someone is patronizing me, but I can’t describe the emotion that evokes. It doesn’t have to be all one thing, of course. I feel like quite the melange myself. Some traits modify others.
Thank you. I often use the word "feel" as synonyms for "think" or "intuit". I'm not aware of doing it, in the moment. (I was a college English major, and knotted however, that I use metaphor and simile a lot in order to describe an emotion/thought). You're right in that some of this could be disassociative. I have a therapy appt next week and it'll be coming up!
It makes sense. Sometimes I am overwhelmed by my emotions. And sometimes perhaps as a result of that, they seem to turn off completely. It becomes like I'm controlling a game character, the emotions become more like just data. It might be a different experience.
Medical professionals keep using the pain scale incorrectly and it's causing a lot of confusion for everyone. They're supposed to ask "On a scale of 0-10 with 10 being the worst pain YOU have ever experienced and 0 being no pain at all, how would you rate your pain?" The purpose of the scale is to establish a baseline to figure out if any interventions help the pain, do nothing, or make it worse.
I'm so late to this video but so glad I watched it! Every time I watch your videos I learn something new about myself. Like that maybe the fact I seem to get itchy when I've been socializing for an extended period of time is a sign of overstimulation and not a sudden allergy to the environment 😅 As someone who is always feeling way too many emotions and goes into emotional meltdowns a lot, I really resonate with the way you've explained this. People always say they're confused by me "thinking I have this" when I express too much, too often, but that doesn't mean I know what I just expressed or why!
I especially loved Chris' description of the doctor's office, "on a scale of 1 to 10..." - that question has always driven me crazy. Thanks for talking about it! If I can give a number answer, it's always got decimal points, as in "Uh, 6.5?".
amazing video ! I'm so poor in interoception that I never notice right away when I'm sick. For the hunger, either i'm not angry, or i'm ravenous to faint, but I miss the in between. Thanks !
Thank you Chris and Debby for putting all of this into words that make sense to me and that accurately express what it’s like inside that crazy soup that is my brain. Emotions as described traditionally never felt right. Who experiences just “sadness”? That word is so far from encompassing the complexity of the experience that has not only “emotional” but also sensory/physical/cognitive flavors.
Growing up, when anyone would ask me how I was doing, my answer was almost always, “I don’t know”. It drove them nuts and they frequently complained about my doing this. I never understood what I was supposed to answer because I was also raised not to tell lies. It became a no win situation. But I still most often just told people, “I don’t know”, because I didn’t know, and I didn’t know how to know even though they always told me, “well if you don’t know, I don’t know who would.” And that wasn’t helpful because if no one else would know then who am I supposed to learn how to answer that question from? Everything just always left me confused. Nobody else ever seemed to struggle with answering that question, but not one of them could be bothered to explain to me how I was supposed to do it.
This sounds so much like my 23 yo son; ASD/ADHD. This video helps me understand what he’s going through/experiencing. Excellent description/explanation. Thank you. (Btw, at 58, I’m starting to think that I may be undiagnosed on The Spectrum.)
Wow, I'm so glad i found your channel! I feel like I've found my gang in the comments section lolol. (I've never felt like I fit in with the autism community because other resources and groups I've been directed to cater for people with more obvious traits and assistance needs. Me, masking so well and being high functioning, couldn't relate much. But this is so relatable). I especially love how so many people in the comments section talk like I do! Concise, with such apt analogies, fun, and descriptive in the most satisfyingly succinct and digestable way! In my daily life, when I want to understand something, I find people don't describe things enough, or occasionally do so but in an academic or dry manner - neither of which actually help me really get it. I can't get enough of the comments section because it feels like it's feeding my brain lots of delicious information that's sparking it in all the right places! Love you all! Ps. Is there some other trait around not following typical morals? Like having a different opinion when people get upset or condone some things - like cannibalism vs war vs murder vs execution?
What people here seems to keep missing about the pain scale question is, that it's also used to compare the effectiveness of treatment. If you gave a number before a treatment and after that you gave a lower number they know something has changed. And if the number is same or higher, somethings needs to change.
Before I know I was in the spectrum I have never heard this word before and even less that I had/have it. For me it's a trouble naming what I was feeling. But I had so many "anxiety" problems and did not even know that was anxiety I thought I was just a little bit worried or just expecting for something to happen a little bit more than others, but had not a clue that I was breathing faster and other times I was short of breath, and my hands were shaking. Only when I was like in a Panic attack I thought oh I think "I am anxious". That means I only noticed anxiety in myself when it was too much. I even have moments and was in most of the time I didn't know if I was tired, stressed or angry. I didn't know if I was borred, tired or unhappy. Even falling in love or have a crush, just atracted to someone or just admire them I had big trouble to find out what is happining inside me. That ALL has a name Alexithymia.
you tube just realized I love your channel. I'm the third to comment. yay me. you are going to take over as the number one autistic channel. just wait for the explosion in your popularity. it will be great until you feel pressure to be hilarious. my unsolicited advice is to make content that achieves your goals of being helpful. Get lofty and strive to be a leader in the neurodiversity movement. If funniness happens along the way - that's neuro- icing on the cake of autism.
I’ve only just done my initial assessments for ASD and scored consistently high on all of the questionnaires. I’m now watching this and reflecting on the couple of years I’ve spent doing CBT with a conventional counsellor trying to ‘learn’ and communicate emotions (and getting nowhere).
I currently feel it because a co-worker died ... In these situations I have trouble expressing what I feel. that´s why I checked empathy when you are autistic ... there are three types of empathy and we seem to struggle with cognitive empathy. It´s not that we don´t have empathy at all. we have.
I followed a discussion on another channel about the three types, and people seemed to vary. I have way too much emotional empathy, which I think is common. I think I have mediocre cognitive empathy (I need to be able to imagine what the other person is feeling, or rather thinking, which can take time, and has to be relatable for me). I have crap compassionate empathy, I fit the stereotype of the autistic person who doesn’t know how to comfort someone and freezes. I’d suppose this was a guy thing, and maybe sometimes it is, but the channel creator, who was female, matched me for type, she relied on her husband to comfort her kids. But a number of commenters seemed to feel they were good at compassionate empathy. Admittedly, many seemed to focus on how to fix the problem, which is often not what a person seeking compassion is after. In the end I think it may be what Paul Micallef described as autistic people often having a “spikey skill set,” good at some things and bad at other adjacent skills. And over strong emotional empathy results in flooding, which impacts our responses. I could believe we tend not to be good at what I might call “instinctual empathy,” which would be sensing what kind of response another person is seeking. I’d say I’m hopeless at that.
The 1 to 10 pain scale is an insane thing that should not exist. I have decided to only use 5 or 10 on that scale. 5 = it hurts enough to see a doctor 10 = it is agony.
Doctor need to explain more how the scale of pain works... so many people don't understand it ! It's not about the number you say. What interest them is how this number evolve. They know there isn't a maximum pain. This number give them a rough idea how bad is your pain. The sole purpose of this scale is how they are going to deal with the pain. It won't change disgonsic.
i remember when i was younger, i told an older person friend my brain never stops, and they said, 'youre brain isnt supposed to stop' lol so i just went with it. then as i was older doctors told me those are racing thoughts and its anxiety. so i just went with it, regardless of the fact that i dont actually feeeeeell anxious most of the time. i think ive figured it out. it's not anxiety, its autism. and now i wonder about that person who told me brains arent supposed to stop. and wondered did they take 'stop' as in super literally like 'brain dead' stop? and/or possibly they were autistic and didnt know?
Finding a good therapist is so hard. When I told my last therapist I couldn't express how I felt, always had to guess or just felt like I had no emotion , she just shrugged it off. ^^; Thanks for the great video ! I resonated a lot with this! :)
I realted a lot to the difficulty with describing your symptoms and level of severity to a doctor. I recently took an in person diagnostic test where they asked me seemingly endless questions about my feelings which I had to report on a scale. The questions were difficult to understand how to interpret correctly and my answers felt more like randomly shooting in the dark for the right answer. It was a really overwhelming and it sent me into a meltdown after the whole ordeal. I haven't been able to work up the mental strength to follow up and complete the testing.
I recently discovered the word and it fits perfectly with my neurodivergent experiences and suspicions (well there's not really any doubt tbh and that was recently confirmed by a professional). This video explained it in a manner that I never could, I wanted to thank you for that.
Please do a video on the difference between Autism and psychopaths differences. Interesting stuff about that! Complex PTSD is associated the this alexitemia too!! Trauma and ASD overlap at times too!!
Oh my gosh! God bless you for starting your channel! You have brought me my ASD 25 year old so much closer. He says : yep thats me or no not me and I never knew these things. And he couldnt explain it.
That’s amazing - this is EXACTLY what we were hoping to do when we started this. Autistics are so often misunderstood, even by our loved ones, but it’s not intentional. Debby said the same thing after my diagnosis and encouraged this channel because she said “you explain it well - I bet it would help other people who can’t.” Thanks for being here 😊 and thanks for this message!
Chris, thanks for talking about this, it was very interesting to hear someone else take on their experience of Alexithymia. Your description of your experience of Alexithymia is so vastly different from my own. Your awareness of having emotions ... it sounds like I have about 1% of what you have. And 'processing emotions' ... I don't ever need to do that, and the idea of doing that is completely foreign to me and would be utterly pointless to me (I do process my thoughts which is extremely valuable to me). I'm amazed at the vastness of the spectrum here. The biggest issue I see with having Alexithymia for me is in the huge struggle with being about to connect with others. You sound like you probably have 'introverted feeling', whereas I have 'extroverted feeling', if you buy into the whole 'cognitive function' thing (but then you have people who think that everyone has all 8 cognitive functions, which is definitely not my experience).
I have the so called double empathy problem, though I don't see it as a problem but kind of a super power... Sometimes. I just have to go to the garden, do housework, declutter, go for a walk on my own but also, as a Christian, I pray to God... and stim.
When asked how I feel, I find myself defaulting to recounting what events have me feeling whatever I am at the time and hoping/relying on the other person to infer what that might mean for my emotional state. Because, for me, while knowing the reason(s) for how I'm feeling is easy enough, actually defining those emotions in a few words in the moment just does not compute usually unless it's fairly simple. I might or might not be able to think back later and go "oh, yeah I was feeling __ and __ then." As far as expressing emotions, I'm generally awful at it. I'm constantly asked if I'm upset when I'm simply neutral. Or I'll go into full meltdown over relatively small things that my brain just can't handle at the moment. Looking back, that's often due to other factors overwhelming me and that last one just breaking the dam.
What sucks is when you have 3 severe autoimmune diseases affecting your entire body including your heart and lungs AND you are autistic and doctors and medical professionals HATE it when you over explain things 😢
this video is so relatable. and also explains why it took me until fairly recent years still to find a primary doctor who believes me and cares about me. previous providers I had seemed to get fed up with me, cut me off the times i did try to explain myself, and wrote off everything as "anxiety". the doctor i had now has figured out ways to walk me through questions while doing the physical that dont feel like trick questions to me. he's made so much progress with figuring out my physical health and I feel safer with him. I had never realized the intense overlap with my healthcare difficulties. mindblown rn.
Thank you for all the content you put out there! Not only helps people view individuals with autism for who they really are but you also help us parents of such children understand them better. I just have a question. Were you always able to describe in detail yourself and the way you function like you do now, or dies or come later on in life with maturity. I am asking because my son who is 15 with PDD-NOS struggles with inferencing, expressive language and retelling in detail. Thank you for your time!
For me, linguistic ability improved greatly with age (nearly 70), while hormonal instability of teen years made things very difficult - not only communicating, but I too regularly got "in trouble" (like Chris), and didn't fit in with most peers (i.e., "weird"). I've always been pedantic, and while it's challenging for neurotypicals to apparently endure, it's not a problem with other autistics - we're "on the same page" re communication. Thanks for pointing this out, too Chris.
I have a lot of empathy for the people that I know well. They’ve taken the time to show me that they will support me. Everyone else just seems ingenuine and I find that kind of relationship a waste of time. My friends are my family and I love them more than they’ll ever know. I often show them my love with close physical contact (hand holding, long hugs, a kiss on the cheek) and they know it’s not a romantic feeling, just a feeling of emotional intimacy that goes beyond the words available to describe how I feel. If I trust you enough to be physically close to me, I trust you a lot with everything else in my life. Also childhood emotional neglect could play a role in this.
I get asked about the pain all of the time from doctors, physical therapist and I had no idea why it was such a struggle to come up with a number. Now I know that I have this weird affliction too. I knew I was weird, but still find it strange that I am unable to answer the strange question at least they are strange to me. I am so empathic that I could not understand why people would tell me that I do not show my emotions and maybe it is because I read other peoples emotions and mine are so solemn that they just do not show. Ok, once in a awhile I make a joke in a way avoiding my own seriousness. Like yesterday when I was told to ride this bike to get warmed up before they put me through torture. They wanted me to ride it for ten minutes and I put my feet on there and got started and said there is something wrong with this machine it does not say 10 minutes yet. A lady next tome also getting therapy, could not help but laugh. I told them this machine must be broken it just went by the ten mark so fast, and of course it was just ten seconds. I did not have any visible emotions beyond that as I focused on the painful exercises as I counted. I think the joking is also a way of avoiding my anxiety as well, I am not sure.
It's also the lifelong frustration of people constantly asking you how you are or how you are feeling today and then you try to explain and their eyes glaze over or they accuse you that there seems to be always something wrong with you. I still do not understand why everyone keeps asking how I am and they really do not want to know what is going on because there IS always something going on or bothering me. It drives me absolutely crazy.
Exactly! I would rather have nobody asking anything than having them ask all the time but never wanting to hear an honest answer! It's as if they keep asking until they finally get the only answer they want to hear: "Fine. And you?"
@@tihana13it is extremely frustrating!! They dont want to know ... And who of us can afford to be aware of how we are, today, when we are in public?? We are already in overload. Do we need to be shoved into feeling and awareness of our pain mode, too!!??? No!!
I usually respond to "how are you?" type questions with: "I am". It's funny to see.
If they inquire further I can try to point out specific, or ask them to further specify their question. "What part are you curious about?", "How specific do you want to know?", "For what reason do you want to know?".
It took me until my late 20s to realise that "how are you?" is basically the same as "hello". The vast vast majority of people are not actually asking how I am and it's more of a greeting than anything.
@@Zayaxa It's not 'just' hello, often times its more complicated. Sometimes it also means: "What is going in in your life recently?". Often times they are genuinely curious to how well your recent life has been progressing, but they rarely mean that they care for the 'whole story' at that moment. Which is frustrating, because either you can overblow them with details and speculations, or completely miss the points where someone would genuinely appreciate and want a large info dumb on your life in "how are you?".
At least, that's how I tend to view it.
I am autistic & I suffer feeling empathy to the point of feeling physical pain when someone is injured.
@sarahstrong7174 I'm the same way --- it's exactly why I can't watch violent TV or movies or play/watch violent video games.
Just learning that I probably am autistic, at least I have a ton of autistic traits. Now when my husband or kids ask me, 'How are you feeling?' I allow myself to stop, see if I know how I feel, and if not, I just say, 'I don't know.' What a relief. No more making up an answer.
Alexithymia is a hell of thing. Explains what I once thought were panic attacks and a lot of other overwhelming physical experiences that were tied to emotions I can’t name. All my shrinks and psychiatrists missed it AND my autism. So I fired all of them once I got my diagnosis. We are truly on our on with this folks. Thank god people like you have the energy and courage and skills needed to post content like this. Thanks!
I think there are more emotions then those that have a name in language. Mixed states. Supressed emotions. Emotions that are misidentified by ourselves or others. Motivations attributed to us. Emotions that need to be worked out or worked through but there us no time or ocasion to do so. For exmaple because before tou zan do so another emotion show up to take our attention.
We get an emotional backlog of unresolved states.
And people wonder why we burn out.
Find an autistic therapist
I accumulated dozens of notebooks worth of emotions, and I was complimented on my level of self-awareness and problem solving by the one councilor who was actually interested in reviewing some to get a better understanding of me. Sadly she had no experience and probably next to no education on autism. Fantastic person otherwise.
Same with complex trauma!
@@thijsjongthis is why my alone time is important after abuse from
Very toxic people!
When people ask me how I'm doing I say, "upright and above ground!" or "I'm on the right side of the dirt!"
They laugh and I get out of having to say anything else. Woohoo!
I have had to learn to count my limbs. I still have them all, and count that as the win, and say, good thanks, i stead of getting stuck in a full body scan, which is even more overwhelming.
Yup. My standard is *wry smile and shrug “Alive.” Lol
"Good so far, but it's still early in the day."
Unless there's context I generally consider that a greeting more than a question. The default response is fine how are you.
"I'm not in the obituaries, so I got up!"
One thing that comes up a lot for me with empathy is that I either don’t know the “appropriate” way to respond or the “appropriate” way to respond is uncomfortable or otherwise difficult for me. The empathy is there, but I may be thinking, “is it appropriate for me to ask a question that may seem probing?” or “Do I have to hug for this?”
My inlaw died today....and i have no idea how to respond. Sad? To sad? Not sad enough? Ring? Txt?... hug?.. dont hug?
Oh god yes.... I never know when people like want a hug when their sad and stuff like that. 😑 That's why I told my very close friends to just blatantly tell: I need a hug. That solved a lot. 😅🙏🏻
Oh, i can name the emotions / feelings, but i cant always feel my feelings, emotionally. . I mostly think them or have them in my body. But i rarely feel my emotions emotionally, even though i look and sound extremely emotional. Body reacting. Feelings not feeling.
So frustrating.
Eg. Anxiety often makes me look very calm. Used to get told that i "exude peace"... I had no peace. I was screaming inside. But my face was very still.
Your noting that you can’t always feel your feelings caught my eye, because it implies that sometimes you can. I also have an inconsistent ability to feel and also interpret my emotions. I noticed this sometimes in my late teens - if I experienced emotional flooding, for a few hours afterwards I would be able to sense and process my emotions. It’s like the big emotions opened a synaptic pathway that is normally inactive. But after a while it would fade out again. Same thing with emotional attachment: I will occasionally have a big burst of (usually sad) emotions about my relationship to someone, and for a bit I can tell that I care about them, and even show it. I’ve tried to hold onto that, and occasionally have succeeded for a while, but it always fades too. Once it’s gone it feels like it was never there.
I don’t know why I am like this. My best theory is it’s a combination of alexithymia and ADHD object permanence troubles.
It’s the oddest thing, to have an emotion in your body, know it’s there, see it affecting your behavior, but not be able to feel it!!! How does that work anyway?
Deffinatly shouldn’t be a thing.
What you describe sounds oddly relatable. Am nowhere near a diagnosis, just focusing on the autism topic and being in therapy for c-ptsd.
But in my last job as an vet‘s assistant, I always got told I seem to be „calmness in person“ when I was raging and being in agony inside.
Me too
I relate to feeling anxiety inside and internally screaming but people think I’m calm and at peace. And they wouldn’t believe that I’m anxious and almost out of breath because I don’t show anything on my face or body.
At some point after I started really researching autism as a probability for me, I came across alexithymia for the first time. It was like a revelation. Decades of not being able to do much more than shrug when my wife would ask “how do you feel” during “talks”. It was so frustrating for me; I can’t imagine how bad it was for her (to her credit, she never once made me feel bad for it). I sent her the Wikipedia article with the comment “there is a freaking name for it!”
Your description of the intense, fast-changing emotions is also spot on for me. There is SO much going on that I can’t even begin to process it, much less put words to it.
❤
This deserves to be cried about, but guess what? I’m not feeling it!
For years, whenever my husband and I would have conversations about what was currently making me emotional/upset/confused, he would ask what I was thinking/feeling about something, and I would always have to answer "I don't know" before I could begin to put anything into words. I wonder if that was because it took time for me to figure out what was going on inside me, and I felt I had to say something as a stop-gap measure, instead of saying nothing for too long while I was getting my thoughts in order.
I for sure was shocked a couple of years ago (after working on engaging with my emotions in trauma therapy) when I recognized a particular feeling and realized I had labeled it as multiple different emotions over the years, including opposite ones, such as fear and love!
It's like when you want to post a comment review on a great audiobook you just finished and you're overwhelmed with emotion... impossible to communicate in words and you resort to ⭐⭐⭐⭐⭐ (stars) only... BTW, thats how I feel about this video 😮🙋🙂
You found a good description for it and I regularly feel like that as well. Thank you.😉 And yes, 5🌟s for the video.
It’s like adding a new sauce to the big brain salad. ❣️😁😉 At least that kind of feeding ourselves we think of regularly.
I have a hard time leaving reviews! I’m a short, sweet and to the point kind of person and leaving a review is very stressful!
That's SUCH a great analogy! Love it! (and love analogies!) 😊
@@Kivlyn.07 I totally relate!
OMG this is perfect. Especially the review part. I be trying to say something different then get overwhelmed and end up putting something similar. Then I get mad at myself for not being able to say more of what's actually in my head. Then rinse and repeat the overwhelming....
I have delays in feeling emotions, and confusion over the emotion I am feeling. Sometimes I'll have a lingering feeling buzzing around my head, usually stemming from something that happened days prior, with no idea how to identify it. The gap between the inciting incident and the emotions adds to the confusion. Also oftentimes the only way I can describe the way I feel is with simple words like bad or crummy, or I cam describe the facts of a situation but not the emotions. The emotion grows and becomes more debilitating, keeping my thoughts in a loop, but the worst part is the frustration that comes from being so confused all the time! The world has moved on but I'm still stuck wondering whether I actually am upset about something that happened 3 days ago that I said wasn't a big deal at the time...😵💫
I was in the dentist office and she was pushing on my teeth after also getting mad at me for not using my drops to dry my saliva, I had so many overwhelms going on at once - she asked why I was crying and I had no idea what to say!!! I said my teeth were hurting bc it made the most sense at the time. She got even madder bc “it shouldn’t be hurting” she left the room bc she was mad. I told the hygienists I was upset bc she was mad at me. It was just a mix of everything!! I had no idea how to explain it I could only cry. Then I found out about autism….
If your dentist gets angry at you for crying, go to a different dentist please. Medical personnel need to be able to handle uncomfortable situations without reacting emotionally. I wouldn’t trust their other abilities if they are getting the basics wrong
When Ricky from Trailer Park Boys said "sometimes I don't know how to express myself when I'm trying to be properly different", I felt that, I know it's a comedy show, but that's how I feel in alot of situations
Total side note, I live in the area they (Trailer Park Boys) used to film. Though I have not watched the show
I don't think that was the intent, but Ricky was written as someone with ADHD (... along with other problems ha)
I love this show very chaotic and funny! Definitely a great quote for those struggling with autism and alexithymia
@@Observer31 I always thought something was going on with Ricky, alot of things I see how he reacts and it seems like the way I'd react to the exact same situation
Bubbles is my TPB representation.
THANK YOU! I hate that "how do you feel on a scale....?" My psychiatrist used to get so fed up with me.
I have alexithymia, and I am highly empathic somehow at the same time.
I have had people get angry when I struggle to tell them how I am feeling. They seem to think I am being evasive.
Or lying ... do you ever get that? People think you're outright lying when you don't know how to express what you're feeling? Even when I try, people either think I'm lying or they simply dismiss what I'm saying. Ugh! One day maybe people will better understand autistic people like me.
I get along so much better with other autistics! I feel like they understand me and I can be myself. So glad I have a good friend now.
I have gone to therapy and had a person try to teach me my emotions. I had no clue I am autistic and now realize it includes this so going through that therapy has caused more problems for me than good. Sure, I can recognize when other people are displaying emotion and identify it, but I cannot do it for me, the main person who is struggling!
Have you heard of IFS (Internal Family Systems) therapy? It's a framework for understanding and interacting with your internal landscape, and I've found it to be very helpful in becoming aware of and engaging with my emotions, in an internal felt-sense sort of way. Dr. Tori Olds has a great intro series to it on youtube.
You perfectly encapsulated my issues with the pain scale! I had bilateral back fractures and a protruding disk I was dancing through. When asked where it ranked on a pain scale, I said a 5 or 6. I was told that there was no way I could be dancing through back fractures (or ranking the pain so low). Welp… they were wrong!
I have any similar problem, the way I explained it in my head was that the pain scale is logarithmic, 6 is not double of 3, it's way worse,
And when they ask you to describe the pain, it feels like explaining color to a blind person
I went into labor twice and didn't realize it. I told them it just felt like pressure.
I either have too much empathy or too little. And this is complicated to explain too, but the easiest way I can is that...
when I have the energy to emoto and chat, empathy seems too be so strong, that I get physically and mentally wiped out afterwords. At that time because I had the energy I put myself so literally in the other person's shoes that its almost like my body experiences The Phantom of feelings that person in question would have experienced.
On the flip side, if I am low on mental and physical energy, then my brain just doesn't do empathy so strongly. I can't quite put myself in that persons shoes as "intensely" as I have before or with others...its like my brain refuses too brain😅. Chatting becomes incredibly hard for me as well then, as I just don't have the mental capacity to figure out proper responses or questions to ask the individual I am speaking too. Its a frustrating thing all around for everybody than I have noticed...😶
You have emotional empathy, not cognitive empathy. You dont put on another shoes, you understand their feelings but xannot understand or will missinterpret or distort why they feel that wey. That is how autistic brains works
I've been struggling to find satisfying objects or toys to fidget with, and I'd watched one of your videos and you mentioned the NeeDoh cube... I just got 2 of them today, and OH. MY. GOODNESS.
Thank you for your videos ❤
Aren’t they amazing?! What colors did you get? Glad you like them as much as I do! I just got the Nee-Doh Gumdrop and it’s also awesome - in case you go for another one soon 🤣
For real, I legitimately never know what exactly I’m being asked when people say “so how was…” or “how did you feel about…” so I ALWAYS have to clarify “what part of…are you asking me about?”
My mom does that a lot and I constantly have to ask her to “be more specific” with the question because I’m like, “idk I’m still alive and breathing so it must not have been that bad *shrugs*”
I’ve suspected my 29 yr old son is autistic since a baby. And sought help endlessly from all professionals. Everyone in my medium sized community said he has ADHD. But that didn’t explain all of the other symptoms like you’ve described in your videos.
He matches those traits exactly including Stimming by backwards hand waving constantly as a toddler.
Due to his issues including ongoing gut issues, he has a hard time keeping a job or a relationship or paying bills, etc.
He is Highly intelligent and therefore people think he’s just lazy.
He is such a giving, good hearted person who has learned to MASK very well including Fake Smiles.
How have you managed to keep a job, have a relationship, schooling, ?
Best wishes, Mom of yet undiagnosed Autistic Son.
Sounds like you need to outside your own community to get him diagnosed. Then you can get him support accordingly. He may very well have both adhd and autism, the combination is common. (If a doctor says it's either or, he's outdated by some 10 years.)
I have managed to get educated, work and have a relationship. But not all autistic people are. Many have neurodivergent partners, because empathy and communication work better that way. I know many need some accommodations in school. A work the choice of work place is very important and part time may be a good option.
@@MiljaHahto Thank you soooo much for your reply! I feel hope!
May you feel supported in every way
Growing up, fear, anxiety, dislike or aversion were inconvenient for mom who said that behavior was not allowed or unladylike. Liking anything mean sharing it or losing it completely to the golden child. Happiness when not felt also by mom was annoying. Blank is good. 11 years of school photos without expression.
“More trauma on average.”
Women being afraid is unladylike? Not something I've ever heard in America. If anything, the stereotype is that women are easily scared.
@@jliller little girls, afraid of spiders, afraid of going to a(nother) new school. Afraid of the dentist, afraid of jumping in the pool… a little kid with proprioceptive disfunction freaking out at floating stairs and totally alone without a nurturing adult. “I don’t have time for this.” She was absolutely positive I was doing it for attention so she wasn’t going to give it to me but she couldn’t walk away and abandon me without being a bad mother. Laughable because the entire goal was to avoid her attention.
This is the best description of Alexithymia I have heard so far. For the longest time, I didn't think I had it, but now I know I do.
i struggle to realise I'm having certain feelings but not with describing them once I've figured them out. Art has helped me practice this process. journalling too. people have been an unreliable audience because the jump to conclusions halfway through a description so I'll write a short passage/letter/poem where the language has to be super concise but can also be a bit weird. Then all of it is in one place without interruptions. same with sketches of figures on paper or in clay. the sensation is visible as a whole
I write poetry
I'm undiagnosed, but have some neurodivergences. And some autistic indicators when I was a child, that weren't pursued, because I was verbally and academically precious.
I definitely have anxiety and difficulty with interception and alexithymia.
I need to watch your video about over-empathy. I have trouble naming my own emotions, but I mirror and absorb others emotions. And get sympathy pain when I see an injury, that's like prongs stuck into my back then electrocuted.
So " Sucks" is one of your stim words. So funny! I love it.
I recently realized the alexithimeia factor in me, so I'm still trying to get it about me. Oh, but it is a new special interest. It seems that there is a delay. It feels like I'm holding my breath under the typical world water and waiting to be in a safe space to feel feelings and look at them for an accurate name. I think it is the typical world that needs the broad words for them. It seems like anger or joy might be a category. Like there are 70 names for ice in the Iñupiaq language, there needs to be many words for the different kinds of anger and joy, etc.
Woah so true, I know in some languages like German they have different elaborate sayings for things like love, hate, joy etc. I agree I wish with all human language we had even more in depth words to describe these complex emotions
@@L1vRosie I like to say our first language is pure thought and emotion, and the language we speak is actually our second language.
Once I decided to just draw what a burrito tasted like.
Soft flowing lines on bottom for the tortilla that supports the whole thing.
Sharp jagged shapes that stretched through everything for the cheese with the taste that powerfully stands out.
Complicated detailed compact forms for the seasoned meat.
I've noticed that some friends will say they love each other, and others won't say that.
Because some languages have so few words for different types of love.
Some people adapt to that by just using the word love to mean all of them, but others reserve love to mean one specific variety and then end up with no way to express their fondness for people they care strongly about in those other ways.
Non-words can help, but they also get lost in translation, like no one would know what my burrito drawing meant without me explaining it to them...
I've once explained why I'm constantly tired to a non-autistic friend as follows;
Imagine there's a person with you at all time, 24/7. No he won't be gone when you're going to sleep.
Only you can see the person, and the person is constantly screaming, all the time. 24/7 just 'AAAAAAHHHHHHH!'. Sometimes right into your ear, sometimes from the corner of the street, but most of the time the person is within reach. Very rarely the person is quiet for a minute, but will start again without warning, and you can't do anything to make the screaming stop.
Wouldn't you be tired?
Try to explain to people the reason you're behaving 'weird' or different, is that there's an invisible man following you around while constantly screaming, everyone will think you're crazy.
The pain scale is only used to ascertain the general *intensity* - volume, if you will - of the pain. Not what it feels like.
Just realised that I do have autism, but I don't have this. It sounds baffling! It's good to know about the experience of those who struggle with alexathymia, thanks.
Its not fun. Very confusing to us, and to others.
I think a good way to to describe an un-felt emotion, is similar to being on stage and not knowing what to do with your hands. icky.
I don’t have it either. I guess we’re in the other 50% that don’t 😊
You could have it intermittently. Mine shows up when I'm in severe overwhelm.
I'm happy that you found out . When you're a late diagnosis, it's amazing to finally know yourself . Always keep in mind that us autistics are not expecting it the same way. I get sad that it's like this, but it's also incredible and fascinating.
Thank you for this. It can be so hard to sort out feelings. I think of myself as a person who is pretty in touch with what I feel, but I still have times when I have no idea what is going on with me and it can last for weeks. It’s like my brain flat lines
This was all very relatable. First let me say that yes, I eventually realized that being persistently tense had a lot to do with my developing debilitating trigger points in my lower back by my late thirties.
I’ll also note, for anyone who doesn’t know this, that in fight or flight, the amygdala and the sympathetic nervous system suppress higher thinking by design; this is so someone can respond very quickly to a presumed “tiger in the bushes” - or slam the brakes on without thinking if the car in front of them stops short. It’s not well designed for perceived emotional danger, because you can’t think straight. It’s also hard to understand inner feelings, because the amygdala is determined to find external threats. So there is really no choice but to come down before being able to process, much less respond. This physiological reaction happens to everyone sometimes, but much more for those of us with overactive amygdalas.
The meltdowns that you describe are probably most common with kids, but I can vouch for adults getting them too. And in fact I think mine mostly manifested in adulthood. This may be partly because my mother let me withdraw a lot as a kid, and when I did start melting down as an adult, my wife would press me to respond when I could not. As you say, this doesn’t work and in fact made things much worse. At this point, I think there is a reasonable likelihood my wife is autistic too, and I am now aware that the double empathy problem is not strictly a NT-ND dynamic. Learning about different types of empathy opened my eyes to this: I have mostly emotional empathy, and I mirror other’s emotions. I can do some cognitive empathy, but the over strong emotional mirroring makes it almost impossible for me to practice compassionate empathy: instead of expressing sympathy, I freeze up or one-up. My wife is more compassionate, and wants to deal with the problem. So I can give her space, but not the comfort she may be seeking, and she can give me comfort but struggles more to give me space. This tracks with common gender roles (men apparently tend to respond to stress using avoidance, and women by seeking emotional support). One way in which autism may worsen this is that I think we both have a harder time changing our habits than some. That we both clearly have alexithymic traits doesn’t help.
What I discovered when I went over an emotion wheel is that I struggle with emotions in general, especially the subtler ones. Some of this is that my emotions are very big, so for example it’s hard to distinguish embarrassment from shame. An overactive nervous system may be one reason it’s hard to distinguish emotions and sensations. I have poor interoception in some areas, but physical sensations in my brain and parts of my nervous system come through very strongly. I’ve had hypothymia and varying levels of depression most of my life, so I found I was not too bad at identifying negative emotions, but almost blind to positive (happy) emotions. I imagine the anygdala plays a part in that as well. And I’ve recently realized that I taught myself to not get my hopes up, because disappointment, like frustration, hits me very hard.
Some thoughts (of many). Yes, my brain is always running full steam! And ADHD limits my ability to determine if the ones I choose are relevant or not. Hopefully some are!
I have multiple family members that are on the Spectrum, including myself. My mother has never been diagnosed, but I strongly suspect that she is. When you brought up the example of the mind never stopping, it made me think of this unusual ability that my mother has. When she is faced with a problem she can't solve, she will often come up with a solution in her sleep. For instance, despite being in her mid 60s, my mother managed to move a 500lb front end loader tire by herself using only ropes and a few items from around the house. She devised the entire system in her sleep, and put it together when she woke up the next morning. She does that all the time. She says that she just has to think about the problem before she goes to sleep, and it will come to her by the time she wakes up. She has managed to come up with some very creative solution to problems in her sleep.
I hate being asked how I am or how I'm doing because I quite literally do not know. Usually, when I get asked this I'm not actively feeling anything, I'm just existing. I have to really look inside myself and study my feelings to determine what it is I'm feeling, and most people just don't have the time or patience to wait for me to do that, so usually I just say I don't know. If it's just an acquaintance that I happen to run into out and about and they ask me "How are you", I just give them the standard answer of "I'm fine" even if I'm having a terrible day, because they don't really care how you are, they just want you to respond with "fine" and ask them how they are, so they can tell you about everything wrong with them and you can nod along and say "that sucks" and give them comfort. At least that's what I've noticed whenever I talk to someone. I've tried telling them how I really am a few times, but they just give me a look that says 'Why are you telling me this, you were just supposed to say fine so I can leave or tell you about my sucky day'. I don't really know if this is due to autism in regards to me, I've never been diagnosed officially, or if this is just from being emotionally repressed my entire childhood because my dad would yell at me if I ever displayed any emotion he didn't like, basically anything other than happy and smiley all the time. I just figured it was because I learned to close off all my negative emotions and feel everything internally without it showing on my face, that now I just can't feel or express them properly anymore. I don't think I'm autistic though, maybe I just have a couple autistic traits or am high-functioning, there are a lot of other autistic traits that I don't have any problems with.
Since learning about this I have a new peace and, indeed, a sense of new power and prerogative, when it comes to "being in touch" (according to an external...which means essentially WRONG...assessment) with my feelings. How may times, agonizing times, in my life have I been made to feel incompetent, inadequate, suspiciously evasive ("What are you hiding?"), because I haven't been able to produce a satisfying "blurb" detailing my inner life--you know, like a press release from the White House--for those who think "the people have a right to know." Since my autism discovery a year ago I sense a miraculous new peace and freedom from any such responsibility now. There is no such thing as a default right to know. My world of feelings, both emotional and physical, works on its own terms, and if those terms happen not to be what the world considers "terms" (i.e., words), well, too bad! Perhaps the most powerful phrasing that has come to my mind, when it comes to negotiating such "examinations" in social settings, when an affective-cognitive signal or affirmation is presumptively required of you, is, "No, that's not the way I think." Simply to state that I don't put things together the way it's being assumed of me. That's all. Your question doesn't relate to who I am. If you would like me to try to express how I see things and what they mean to me, I'll be glad to try, but it's not going to be a snappy, quickly digestible answer on your terms. Well, that separates the men from the boys, as it were. Real friends will be interested, and as for those who are not...I guess that shows why the conversation was never worth pursuing anyway! We need to fully seize the power and freedom inherent in two things: silence (when we simply do not care to talk about something), and answering in our own real, authentic terms rather than on an imposed template. Everything in the middle, i.e., a frantically scrambling answer rigged to mirror the foreign constructs imposed from without to placate a social demand, when you know in your heart none of this is real and you feel like an accomplice in your own violation, well...that's for the birds. Silence, or answering authentically, one or the other. That's peace, and freedom.
This is so brilliant and helpful!
@@katharinegates2917 Thank you!
Wow! You are an excellent writer. Hats off to you for such a superb explanation.
Thanks, Ken, I agree completely. My succinct statement (not as eloquent as yours), to neurotypical linguistic convolutions or questions, is "I don't understand." Then, I look for them to explain it differently (which tends to surprise/ throw them off, while they search for alternate communications)... meanwhile I process internally ...eventually we reach a point of mutual communication (usually). This works especially well with friends, and sometimes medical personnel.
@@theemeraldcity94 Thank you. 🙂
Before my diagnosis, my psychologist thought my lack of emotions was due to trauma. Whenever she asked me about feelings and emotions I just tell her it’s flat. I don’t feel overly hypo nor do I feel down, it’s just flat.
When she told me to tell her three happy memories I couldn’t come up with any. I told her, what is the threshold for “happy”. How do I know if that’s just joy, content or is that happy?
Now, I noticed for me, it’s like a button. Once someone tells me that my behaviour tells them I’m happy, I start to notice when I do it again. I actually have to have people around me help point it out to me how I’m feeling.
Knocking yet another great video out of the park Chris and Debby!!! I so very much appreciate how you are candid and humorous and dropping knowledge bombs with kindness and grace.Please keep it up and know - I just think the world of you both - you're helping me and so many others!!!
Ditto! Thank you so much. This was incredibly insightful and helpful.
0:49 I'm really glad the definition of alexithymia includes "sensations" and not just emotions. I've heard it talked about as not knowing what you're feeling (emotionally), but often I don't know what my *body* is feeling -- is it hunger or nausea? My hunger has an On/Off button: I go from not hungry (zero on the dial), to suddenly famished (1000 on the dial). There's not much in between. And Hungry 1000 can be that nauseating hunger when you start to feel faint, though not all the time. Sometimes my alexithymia can be other pains/discomforts in the body, and "pain" for me is at a very low threshold. Paper cuts are at what other people would feel if they got a deep gash. The same is true for emotions. Years ago I had myself tested to see if I was bipolar because I couldn't understand why my emotions were either REALLY HIGH!!!! or *reallly lowwwwww*, and could go from one to the next in an instant. (The testing was negative. Testing adult females for autism was not even on the radar back then.)
A few days ago I had to fill out an online intake form for an appointment with a medical practitioner, and one section of the form said, "This exercise will serve to display how you feel about varying aspects of your life. Please rate the following aspects on a scale of 5 (very happy with)- 1 (not happy at all with)." It had items like Joy, Social Life, Home Environment, etc. That scale just didn't make sense to me. There's no *context* for the numbers -- and like Chris says in the video, it's changeable, sometimes from minute to minute! And what might be a 3 to me might be a 5 or a 1 to someone else....how is this useful? One of the items was Career -- I'm retired. What do I answer? I *hated* the day jobs I used to have....but now I don't have to go to that torture anymore, so I'm very happy about that. Do I answer 1 for what it was when I had a "career" (which it WASN'T -- it was a day job, aka daily slave-torture, and nothing more), or do I answer 5 because I'm happy now that I don't have to go through that anymore? These types of questions are so typical of neurotypicals who create these questionnaires and intake forms, never considering that such questions are meaningless to neurodivergents like me.
this is so validating, thank you!!! actual tears rolled down my face to have these issues put into words after so many years. i’m undiagnosed but thinking i am also AuDHD and it’s just.. exhausting
bro is helping me everyday, one day at a time
Journaling is great for introspection, including try to sort out what you're feeling and why.
@@jliller can’t do it. As a kid, I kept a journal. It was secret because I had 0 personal space and a snoopy sister. One day she found the hidden journal, broke the lock, shared it with her friends, and tormented me about what I had written. I thought my mother would defend me. Nope! She scolded me for “keeping secrets.” I’m still uncomfortable writing down my feelings.
@@silverlagomorpha3177 The lesson you learned was that you're uncomfortable sharing your feelings.
The lesson you should have learned is that your family are shitheads.
Alexithymia is completely debilitating for me. I find my lack of capacity to identify, process and cope with my emotions to be the single most disabling aspect of autism, and I'm at a loss of what to do about it.
I have a bunch of strategies that help me to manage okay for 2.5-3 weeks out of the month, but PMS (possible PMDD?) devastates me for the remaining 1-1.5 weeks, and every month it takes me to the verge of burnout; holding down my job at this time is about all I can do, and even that is touch and go and leaves me with nothing left. It feels like no way to live. It's certainly not sustainable.
If PMS is so bad for so long, I think some help with the PMS itself might help your life quite a bit. If you haven't discussed it with a gynecologist yet, I suggest you do.
It would leave you more energy to deal with everything else in your life.
Contraceptive pill is mandatory for me for that reason. They just discontinued the only one that works with my body
I get that! I have to go outside in the woods.
Recent research shows that autistics process on average 42% more info for every sense. That’s enough to cause ptsd and create alexithymia as a protective measure, did for me. So I’ve had to learn how to feel my emotions by the electrical/warmth sensation in my brain and create a map of my brain and where my emotions show up
Your videos are just top! 54 year old Autistic-ADHD Female. Greetings from Europe!
The problem with empathy is that people mistake it for compassion 😕
This is relatable for me, but not to your extreme. I'm aware of my feelings in a general sense, but I suck at expressing them or putting words to them for others. It makes things difficult to convey. Like when I'm in extreme distress and having a meltdown the most I can muster to express this is "I'm sorry". I guess I know what this is now. Thanks for the video
OMG the 1-10 scale of pain thing drives me INSANE. If it was 10, I’d be incapacitated so we wouldn’t be having this inane conversation. If it was a 1, i wouldn’t be here. So … OBVIOUSLY it’s bad enough that I went through the hell of setting up this appointment and dragging myself here against my own will and am now trapped here in this tiny,bright, obnoxiously smelly room wondering when the baseboards were last cleaned and thinking of strategies to deal with all the things that might possibly assault me while I’m here (blood pressure cuff torture session, touching that crinkly, slippy paper covering the dodgy examination table, how to get up on that table without falling, having that horrible mouth drying tongue depressor stuck on my tongue, gagging me, having that piercing light shone in my eyes ….) ….. Everything between 1 and 10 is a mystery to me. As compared to WHAT? Can we have a demonstration of each number that I can contemplate for an hour and get back to you? Augh. What a freaking nightmare the medical system is. And on top of all that, I’m trying to work out what the right answer is. If I go too high on the scale, am I going to end up having to endure a gauntlet of torturous appointments with aggravatingly unhelpful specialists? Will there be numerous appointments to labs I will have to figure out how to get to in parts of the city I have no knowledge of? If I go too low, will you just send me home and tell me to relax and maybe sort out my diet for the 10,000th time. There’s no tweaking left to do. I have tweaked the ever living life out of my diet. I practically have a PhD in nutrition at this point. I could probably tell YOU a thing or two or a thousand about nutrition and its effects on every aspect of our complex system. Want me to fill you in on magnesium and Vitamin D, all the latest research and why this one paper was garbage and that one was intriguing?
😂😂😂😂 You should really consider writing a blog! This had me and my wife laughing out loud… for a long time.
@@ChrisandDebby Hahaha😃 The second you mentioned that 1-10 scale and those damn circle faces, I hit pause and BAM, out it came 🤣
I’m really glad it made you both laugh. Maybe I should … I tend to leave what are surely startlingly long essays (see above as evidence) about arcane topics loosely related to something someone mentioned in a RUclips video (I mean, who wouldn’t be fascinated to learn everything there is to know about the physics of light in a youtube comments section, for example) and I don’t think they’re as appreciated (or, admittedly, always appropriate) in that context as much as they amuse/satisfy me to leave … I’ve been thinking maybe I should do exactly that: start a blog. Thank you for the suggestion and the response 😃🌸
Hi, I have ADS (and probably ADD), Alexithemia and poor interoception, so I used to find the 1-10 pain scale hard to report on. But I have made breakthroughs in this that I want to share with you (or everyone). I found kidney stones were really useful to help calibrate my 1-10 pain scale. So now I can just consider how far I am from vomiting on the floor from the pain, on a scale of 1-10. And I tell the medic "I've had kidney stones, this feels like a 5." (Ambulance officer said, helpfully, it's the male equivalent of childbirth for pain, female friend who's done both agrees, so I'm using kidney stones as a unisex pain sample point) I'm not advocating going out of your way to get kidney stones, but most people have broken a bone at some point -- a nice solid 5 or 6. So you can reflect on the excruciatingly physically painful parts of your life and use them as a reference. I'm not advocating you breaking a bone on purpose to get a calibration point. My rule of thumb: it's not over 3 till you can't hold the winces in. (So I guess you could say 3 is like being kicked painfully, unless it was somewhere REAL painful, which is more like a 6, because falling over and almost vomiting?) Glad to have helped!
My Alexa went off at the start of this video and then again whenever you say Alexithymia! 😂
Thanks for your video's, they are helpful making me understand myself a tad better. I recognize the struggle with putting words to emotions after a lifetime of masking, like you, I'm also 40+ and diagnosed with autism in the 80's, never got the help I needed then because little was known yet. I extremely rarely get real mad and when I do, I timeout myself and get away from the situation and return afterwards.
I grew up being beat and screamed at for having emotions. Or ignored unless they happened in a public space where my parents might be judged. Then I would either be placated or demonized. Or my mother would just tell people I was on drugs. So of course I tried to bury any emotion.
Exactly my experience too. Sending a bunch of hugs 🫂, for when you are out of patience (that I'm sure you have a lot of).
Thank you for the nuanced discussion on empathy and alexithymia. I am Dx’d with alexithymia and functionally I do not experience or perform empathy (seriously, telepathically understanding others’ emotions? when I don’t even understand my own?) but as my assessor said, it is a result of alexithymia and not a matter of not caring.
Alexithymia is something I've wondered about myself, but don't think what I experience is the same. Unless I have extreme feelings - usually anger and/or pain, I "think" my emotions. Even that's not accurate. Someone tells me their mother died. I "think" grief. I know I "should" feel grief. But I "think" it. Grief is a thought, not a feeling. Does this make sense?
I'm a very talkative person. I've recently learned many autistics are talkative even though that doesn't fit a stereotype. I just want to discuss thoughts and ideas. In spite of lots of words, when you talked about trying to tell a doctor what's wrong, or on a scale of... I really identified. That's about myself. I took care of my parents 24/7 for 24 consecutive years. It was easier to identify their pain/feelings than for me to identify mine. Another description for my stuff is being on the outside looking in. That's how much of my inner and outer life is - I feel disconnected, always on the outside looking inside. The idea of a person who's died and hovers above their body, seeing themself from the outside, before returning to their body, is the best description I can come up with.
I agree with a lot of what you've said. Thanks!
@@rjparker2414ah, but is it alexithemia...? $64,000 question.
If it’s of use, some of what you described, especially toward the end, reminded me of dissociation. A number of commenters on one of Orion’s recent videos talked about spending much of their time in a dissociative state. Sometimes I think I have too, to a limited degree. I have also experienced acute dissociation, and I didn’t figure out that’s what it was for some time.
There were parts of what you said that definitely resonated with me as sounding like alexithymia too. What I and others have described is, when we talk about what we feel, we talk about what we think. I might say I feel like someone is patronizing me, but I can’t describe the emotion that evokes.
It doesn’t have to be all one thing, of course. I feel like quite the melange myself. Some traits modify others.
Thank you. I often use the word "feel" as synonyms for "think" or "intuit". I'm not aware of doing it, in the moment. (I was a college English major, and knotted however, that I use metaphor and simile a lot in order to describe an emotion/thought). You're right in that some of this could be disassociative. I have a therapy appt next week and it'll be coming up!
It makes sense.
Sometimes I am overwhelmed by my emotions.
And sometimes perhaps as a result of that, they seem to turn off completely.
It becomes like I'm controlling a game character, the emotions become more like just data.
It might be a different experience.
Medical professionals keep using the pain scale incorrectly and it's causing a lot of confusion for everyone. They're supposed to ask "On a scale of 0-10 with 10 being the worst pain YOU have ever experienced and 0 being no pain at all, how would you rate your pain?" The purpose of the scale is to establish a baseline to figure out if any interventions help the pain, do nothing, or make it worse.
I'm so late to this video but so glad I watched it! Every time I watch your videos I learn something new about myself. Like that maybe the fact I seem to get itchy when I've been socializing for an extended period of time is a sign of overstimulation and not a sudden allergy to the environment 😅 As someone who is always feeling way too many emotions and goes into emotional meltdowns a lot, I really resonate with the way you've explained this. People always say they're confused by me "thinking I have this" when I express too much, too often, but that doesn't mean I know what I just expressed or why!
Each of these is a gift to the world. Chris you are a superb communicator, thank you so much for the information and giving it so impeccably.
I especially loved Chris' description of the doctor's office, "on a scale of 1 to 10..." - that question has always driven me crazy. Thanks for talking about it!
If I can give a number answer, it's always got decimal points, as in "Uh, 6.5?".
amazing video ! I'm so poor in interoception that I never notice right away when I'm sick. For the hunger, either i'm not angry, or i'm ravenous to faint, but I miss the in between. Thanks !
Thank you Chris and Debby for putting all of this into words that make sense to me and that accurately express what it’s like inside that crazy soup that is my brain. Emotions as described traditionally never felt right. Who experiences just “sadness”? That word is so far from encompassing the complexity of the experience that has not only “emotional” but also sensory/physical/cognitive flavors.
Growing up, when anyone would ask me how I was doing, my answer was almost always, “I don’t know”. It drove them nuts and they frequently complained about my doing this. I never understood what I was supposed to answer because I was also raised not to tell lies. It became a no win situation. But I still most often just told people, “I don’t know”, because I didn’t know, and I didn’t know how to know even though they always told me, “well if you don’t know, I don’t know who would.” And that wasn’t helpful because if no one else would know then who am I supposed to learn how to answer that question from? Everything just always left me confused. Nobody else ever seemed to struggle with answering that question, but not one of them could be bothered to explain to me how I was supposed to do it.
This sounds so much like my 23 yo son; ASD/ADHD. This video helps me understand what he’s going through/experiencing. Excellent description/explanation. Thank you. (Btw, at 58, I’m starting to think that I may be undiagnosed on The Spectrum.)
Wow, I'm so glad i found your channel! I feel like I've found my gang in the comments section lolol. (I've never felt like I fit in with the autism community because other resources and groups I've been directed to cater for people with more obvious traits and assistance needs. Me, masking so well and being high functioning, couldn't relate much. But this is so relatable).
I especially love how so many people in the comments section talk like I do! Concise, with such apt analogies, fun, and descriptive in the most satisfyingly succinct and digestable way!
In my daily life, when I want to understand something, I find people don't describe things enough, or occasionally do so but in an academic or dry manner - neither of which actually help me really get it. I can't get enough of the comments section because it feels like it's feeding my brain lots of delicious information that's sparking it in all the right places! Love you all!
Ps. Is there some other trait around not following typical morals? Like having a different opinion when people get upset or condone some things - like cannibalism vs war vs murder vs execution?
What people here seems to keep missing about the pain scale question is, that it's also used to compare the effectiveness of treatment. If you gave a number before a treatment and after that you gave a lower number they know something has changed. And if the number is same or higher, somethings needs to change.
So many thoughts. It's hard to pin any down. Other than, thank for sharing because this is super interesting
Hey Alexa-tamia!
I relate 100% to what you say. Now I realise I have it. Already diagnosed ASD and now this is clear.
Before I know I was in the spectrum I have never heard this word before and even less that I had/have it. For me it's a trouble naming what I was feeling. But I had so many "anxiety" problems and did not even know that was anxiety I thought I was just a little bit worried or just expecting for something to happen a little bit more than others, but had not a clue that I was breathing faster and other times I was short of breath, and my hands were shaking. Only when I was like in a Panic attack I thought oh I think "I am anxious". That means I only noticed anxiety in myself when it was too much. I even have moments and was in most of the time I didn't know if I was tired, stressed or angry. I didn't know if I was borred, tired or unhappy. Even falling in love or have a crush, just atracted to someone or just admire them I had big trouble to find out what is happining inside me. That ALL has a name Alexithymia.
you tube just realized I love your channel. I'm the third to comment. yay me. you are going to take over as the number one autistic channel. just wait for the explosion in your popularity. it will be great until you feel pressure to be hilarious. my unsolicited advice is to make content that achieves your goals of being helpful. Get lofty and strive to be a leader in the neurodiversity movement. If funniness happens along the way - that's neuro- icing on the cake of autism.
I’ve only just done my initial assessments for ASD and scored consistently high on all of the questionnaires.
I’m now watching this and reflecting on the couple of years I’ve spent doing CBT with a conventional counsellor trying to ‘learn’ and communicate emotions (and getting nowhere).
I currently feel it because a co-worker died ... In these situations I have trouble expressing what I feel. that´s why I checked empathy when you are autistic ... there are three types of empathy and we seem to struggle with cognitive empathy. It´s not that we don´t have empathy at all. we have.
I followed a discussion on another channel about the three types, and people seemed to vary. I have way too much emotional empathy, which I think is common. I think I have mediocre cognitive empathy (I need to be able to imagine what the other person is feeling, or rather thinking, which can take time, and has to be relatable for me). I have crap compassionate empathy, I fit the stereotype of the autistic person who doesn’t know how to comfort someone and freezes. I’d suppose this was a guy thing, and maybe sometimes it is, but the channel creator, who was female, matched me for type, she relied on her husband to comfort her kids. But a number of commenters seemed to feel they were good at compassionate empathy. Admittedly, many seemed to focus on how to fix the problem, which is often not what a person seeking compassion is after.
In the end I think it may be what Paul Micallef described as autistic people often having a “spikey skill set,” good at some things and bad at other adjacent skills. And over strong emotional empathy results in flooding, which impacts our responses. I could believe we tend not to be good at what I might call “instinctual empathy,” which would be sensing what kind of response another person is seeking. I’d say I’m hopeless at that.
The 1 to 10 pain scale is an insane thing that should not exist. I have decided to only use 5 or 10 on that scale. 5 = it hurts enough to see a doctor 10 = it is agony.
I was frustrated with late diagnosis. Thanks for your video
Thank you! I have such a hard time trying to communicate what is going on in my mind and you've made things so clear!
Doctor need to explain more how the scale of pain works... so many people don't understand it ! It's not about the number you say. What interest them is how this number evolve. They know there isn't a maximum pain. This number give them a rough idea how bad is your pain. The sole purpose of this scale is how they are going to deal with the pain. It won't change disgonsic.
I usually say "fine", "ok" or "I'm here ".
I hope you know what a positive difference you make & how much help you are offering in this world. Thank you!
i remember when i was younger, i told an older person friend my brain never stops, and they said, 'youre brain isnt supposed to stop'
lol so i just went with it. then as i was older doctors told me those are racing thoughts and its anxiety. so i just went with it, regardless of the fact that i dont actually feeeeeell anxious most of the time. i think ive figured it out. it's not anxiety, its autism. and now i wonder about that person who told me brains arent supposed to stop. and wondered did they take 'stop' as in super literally like 'brain dead' stop? and/or possibly they were autistic and didnt know?
Yeeeeh🎉😮
Omg. All this makes so much sense! Holy cow. Thank you!!!!!!!!! Wow
Finding a good therapist is so hard. When I told my last therapist I couldn't express how I felt, always had to guess or just felt like I had no emotion , she just shrugged it off. ^^;
Thanks for the great video ! I resonated a lot with this! :)
The emotions can become numb too from all the masking we do
Really good description and parsing of the experience. You have excellent communication skills, I appreciate it. Subscribed.
Awesome, thank you!
I realted a lot to the difficulty with describing your symptoms and level of severity to a doctor. I recently took an in person diagnostic test where they asked me seemingly endless questions about my feelings which I had to report on a scale. The questions were difficult to understand how to interpret correctly and my answers felt more like randomly shooting in the dark for the right answer. It was a really overwhelming and it sent me into a meltdown after the whole ordeal. I haven't been able to work up the mental strength to follow up and complete the testing.
"I dont know" is a real answer. 😢
I recently discovered the word and it fits perfectly with my neurodivergent experiences and suspicions (well there's not really any doubt tbh and that was recently confirmed by a professional). This video explained it in a manner that I never could, I wanted to thank you for that.
Please do a video on the difference between Autism and psychopaths differences. Interesting stuff about that! Complex PTSD is associated the this alexitemia too!! Trauma and ASD overlap at times too!!
Thanks for the great suggestions!! I agree this is an extremely interesting and important topic. We’ll add it to our topic lists. 🙌🙌
Oh my gosh! God bless you for starting your channel! You have brought me my ASD 25 year old so much closer. He says : yep thats me or no not me and I never knew these things. And he couldnt explain it.
That’s amazing - this is EXACTLY what we were hoping to do when we started this. Autistics are so often misunderstood, even by our loved ones, but it’s not intentional. Debby said the same thing after my diagnosis and encouraged this channel because she said “you explain it well - I bet it would help other people who can’t.” Thanks for being here 😊 and thanks for this message!
No thank you! This is something so special i dont even know how to thank you!
Chris, thanks for talking about this, it was very interesting to hear someone else take on their experience of Alexithymia. Your description of your experience of Alexithymia is so vastly different from my own. Your awareness of having emotions ... it sounds like I have about 1% of what you have. And 'processing emotions' ... I don't ever need to do that, and the idea of doing that is completely foreign to me and would be utterly pointless to me (I do process my thoughts which is extremely valuable to me). I'm amazed at the vastness of the spectrum here. The biggest issue I see with having Alexithymia for me is in the huge struggle with being about to connect with others. You sound like you probably have 'introverted feeling', whereas I have 'extroverted feeling', if you buy into the whole 'cognitive function' thing (but then you have people who think that everyone has all 8 cognitive functions, which is definitely not my experience).
Omgosh, I hadn't come across your content before. So glad I found your videos. This totally describes me.
I was so thankful when my primary care brought in the kids' pain chart - it had faces that corresponded to the level of pain.
I have the so called double empathy problem, though I don't see it as a problem but kind of a super power... Sometimes. I just have to go to the garden, do housework, declutter, go for a walk on my own but also, as a Christian, I pray to God... and stim.
Wow you described it so well, I am AUDHD too.
This is a wonderfully clear explanation. Thanks very much.
When asked how I feel, I find myself defaulting to recounting what events have me feeling whatever I am at the time and hoping/relying on the other person to infer what that might mean for my emotional state. Because, for me, while knowing the reason(s) for how I'm feeling is easy enough, actually defining those emotions in a few words in the moment just does not compute usually unless it's fairly simple. I might or might not be able to think back later and go "oh, yeah I was feeling __ and __ then."
As far as expressing emotions, I'm generally awful at it. I'm constantly asked if I'm upset when I'm simply neutral. Or I'll go into full meltdown over relatively small things that my brain just can't handle at the moment. Looking back, that's often due to other factors overwhelming me and that last one just breaking the dam.
Thank you sooooo much for this video ❤❤❤
Rejection is where I feel the most from others and I feel others energy and this causes me to isolate.
What sucks is when you have 3 severe autoimmune diseases affecting your entire body including your heart and lungs AND you are autistic and doctors and medical professionals HATE it when you over explain things 😢
this video is so relatable. and also explains why it took me until fairly recent years still to find a primary doctor who believes me and cares about me. previous providers I had seemed to get fed up with me, cut me off the times i did try to explain myself, and wrote off everything as "anxiety".
the doctor i had now has figured out ways to walk me through questions while doing the physical that dont feel like trick questions to me. he's made so much progress with figuring out my physical health and I feel safer with him.
I had never realized the intense overlap with my healthcare difficulties. mindblown rn.
Thank you for all the content you put out there! Not only helps people view individuals with autism for who they really are but you also help us parents of such children understand them better. I just have a question. Were you always able to describe in detail yourself and the way you function like you do now, or dies or come later on in life with maturity. I am asking because my son who is 15 with PDD-NOS struggles with inferencing, expressive language and retelling in detail. Thank you for your time!
For me, linguistic ability improved greatly with age (nearly 70), while hormonal instability of teen years made things very difficult - not only communicating, but I too regularly got "in trouble" (like Chris), and didn't fit in with most peers (i.e., "weird"). I've always been pedantic, and while it's challenging for neurotypicals to apparently endure, it's not a problem with other autistics - we're "on the same page" re communication. Thanks for pointing this out, too Chris.
My arms nearly fell off after seeing how many times you changed your shirt for the intro 😂
I have a lot of empathy for the people that I know well. They’ve taken the time to show me that they will support me. Everyone else just seems ingenuine and I find that kind of relationship a waste of time. My friends are my family and I love them more than they’ll ever know. I often show them my love with close physical contact (hand holding, long hugs, a kiss on the cheek) and they know it’s not a romantic feeling, just a feeling of emotional intimacy that goes beyond the words available to describe how I feel. If I trust you enough to be physically close to me, I trust you a lot with everything else in my life. Also childhood emotional neglect could play a role in this.
I get asked about the pain all of the time from doctors, physical therapist and I had no idea why it was such a struggle to come up with a number. Now I know that I have this weird affliction too. I knew I was weird, but still find it strange that I am unable to answer the strange question at least they are strange to me. I am so empathic that I could not understand why people would tell me that I do not show my emotions and maybe it is because I read other peoples emotions and mine are so solemn that they just do not show. Ok, once in a awhile I make a joke in a way avoiding my own seriousness. Like yesterday when I was told to ride this bike to get warmed up before they put me through torture. They wanted me to ride it for ten minutes and I put my feet on there and got started and said there is something wrong with this machine it does not say 10 minutes yet. A lady next tome also getting therapy, could not help but laugh. I told them this machine must be broken it just went by the ten mark so fast, and of course it was just ten seconds. I did not have any visible emotions beyond that as I focused on the painful exercises as I counted. I think the joking is also a way of avoiding my anxiety as well, I am not sure.
This actually helps me understand what is going on in my husband s head when he can’t voice it
Ugh I adore you!!! I’m so glad I’ve found you! ❤