The pain scale is used here in Ireland, but they also dismiss pain. I had symptoms greatly resembling a stroke about a decade ago. I went to the ER and was completely dismissed- and given Panadol (Tylenol) only- after they asked "Is it the worst headache you've ever had?" and I very honestly answered "no", as I'd had a long history of super-intense migraines. Yet, I was slurring words and weak/numb on one side of my body! I recovered on my own, but I was numb and clumsy for many months and often worry that it was a small stroke.
The pain scale is often reported to be dismissed in America too, especially for female presenting people. And I just have a very hard time with Severely Deficient Autobiographical Memory to remember when or if I was in worse or equivalent pain. Not to mention, why should past pain even matter?
Omg that is terrible, how are you doing now? I can’t help but be reminded of when I had a brain haemorrhage and they asked me a similar question, “Does it feel like you’ve been hit over the head with a brick?” - well how the heck should I know, like most people I’ve never been hit over the head with a brick! I just said it’s the worst pain I’ve ever had, because it was, I thought I might be dying. This was on the phone call. I didn’t call emergency services, I called the NHS Helpline. It didn’t occur to me to call an ambulance and the doctor phoned me the next morning and told me to go to A&E (ER) straight away. I don’t know if it was because I’m Autistic or because I was delirious that I didn’t think to just go myself, but why didn’t they tell me to go on the phone?
@@tracik1277 Thanks for asking, I'm fine now but I had symptoms for quite a long time. I felt as though I was dying as well, but it wasn't the first time a headache had made me feel so bad, and there was an obvious reason for that! I hope you are recovered from your ordeal as well!
Pausing at 4:53 because the description mentions the 0-10 pain scale: It helps me to think about 7/10 being pain I can't ignore, and still feel while trying to distract myself. I've also made note of my "baseline" pain for certain things on certain days and use that for comparison. When a medical provider asks "Are you feeling any pain today?" I reply with what I'm feeling compared to the baseline I've memorized: My elbow hurts too bad to do dishes today, for example. Or I didn't have the spoons to shower, and driving made my hip flare from a 4 to a 7. Connecting the subjective measurement to ADL (activities of daily living) helps us understand each other in the appointment, and often makes them take my concerns more seriously, because I explain specific activities I can or can't accomplish - or how much pain i have to push through and come out exhausted.
12:00 While there still are places with strict businesses dress codes, many public-facing jobs in areas like food service and medical clinics allow more hair styles (still with a heavy bias that favors white folks and can be hostile to bipoc folks), piercings, and tattoos.
I have a hard time with my memory on this. I very much live in the now. Sometimes I remember to take notes in my phone. Like I totally forgot to mention to the PT that I'm having difficulty with navigating my stairs at home. I'll have to note it to bring it up at the next appointment. Because I didn't have stairs at the appointment, I wasn't thinking about that limitation with everything else I try to remember to say.
Oh, yeah, the reason I started the above comment: Over the years, masking and disassociation has gotten harder or impossible, and even business casual or mainstream street clothes are usually too much. Cotton lounge pants and a cotton tee with bamboo underwear are my wardrobe almost 24/7 (though I'll change into a fresh outfit 2-3 times a day), and while it's okay to get drive through or go shopping dressed like that, it's obvious I'm not rich or fashionable.
My mother is from a generation where textured hair is considered more "wild" and "less put-together." Even wearing it down too often at a certain length wasn't acceptable. Also mandatory heels, pantyhose, and a full face of makeup. She absolutely loves when my wavy hair is blown out straight or pulled up and away from my face and when I have even minimal makeup on. Such ridiculously high standards. I'm glad professional settings are less brutal, generally, but it's still present and I resent these extra pressures for feminine people, so I resist actively as well as make accommodations for my general challenges as an ND and chronically ill individual.
When I react to people’s pain, whether it’s physically, emotionally, mentally, etc. I don’t think of it in terms of myself, but in terms of how THEY are reacting to it. It’s all that really matters. I know what mystery is like, so I can understand that they are miserable and act accordingly. If that makes sense.
I have struggled with my dread of showering, too! My husband is someone who is more likely to take 2 showers a day than to skip a day, where I sometimes stretch it to once a week. Since I have very dry skin and scalp, it often isn’t so noticeable for me. But if I get sweaty, I get very anxious about needing a shower.
You are such an incredible resource. My son broke his ankle last year and I asked him if he remembers the pain he was in when he fell. He didn't remember anything when it came to pain. I am learning so much from you. He remembers not being able to speak and wanting to in preschool but he can't remember pain from last year when he broke his ankle. I am just blown away. Thank you Amanda ❤ I am learning so much from you 🌈✨🌈
Same. I am learning so much. I broke the bridge of my nose when I was about 6 but they just thought I had a bruise around the nose and eye cause I had fallen, but was not complaining so I discovered about it oy way later. Same when my 3 vertebrae popped out, I recall blacking out but no pain. 😅
It frustrates how, with things like the pain scale neurotypical people seem to think they are making communication clearer but they aren’t really unless all people involved are already sharing the same way of thinking. They tend to ask your pain level but then be pretty dismissive with your answer because a large number of people overstate (or overestimate) their level of pain. This is especially compounded with certain groups, like female presenting people, who the medical profession tends to assume are more emotional and prone to psychosomatic symptoms, etc. they also judge a lot based on how a patient is presenting, so a person who looks a certain way is more likely to be dismissed (for example if you look too scruffy then they assume you are just depressed or whatever rather than taking your symptoms seriously, but if you look too well put together then they assume you aren’t suffering too much because they think a really unwell or in pain person would manage to look after themselves that well). This often effects those of us who are neurodivergent a lot because we often don’t visibly or verbally present pain or discomfort in the same ways that neurotypical people tend to. I remember having to be taught by my mum as a child how to ‘look like I was in pain’ when I was being medically examined for something that hurt because when I just sat there blank faced and told them what hurt and how much they wouldn’t ever believe me. I have a lot of medical issues related to a genetic disability I have and I’ve resorted to downloading a pain scale from the Internet that gives descriptions of what each number means objectively (like 1 is ‘very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain’, 5 is ‘strong, deep, piercing pain such as a sprained ankle when you stand on it wrong or mild back pain. Not only do you notice the pain all the time, you are so preoccupied with managing it that’s normal lifestyle is curtailed’ and 10 is ‘pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident such as a crushed hand and lost consciousness due to pain, not blood loss, have experienced level 10’) so when I’m asked I open that on my iPad and point to the description of the one I feel.
I think having descriptions like that on a pain scale would be helpful because I've had some people say 10 means you'd go to the emergency room. And other people say 8 is emergency room but 10 means you're almost unconscious from the pain. It's like no one really agrees so the scale is useless
I also find the ones with descriptions! It’s not perfect but it’s better. I remember finding one where 7 said something like “avoiding normal tasks due to pain”. Just looking at the little faces I probably would’ve said 3, but truthfully I’d been avoiding stairs for weeks because they hurt my ankles too much. Chronic pain + masking is such a weird combo to try to communicate
i have occular migraines and cant see for a while. the pain comes later. dont worry if that happens again. my ophthalmologist told me that our vision isnt damaged at all. the vision loss is from spasms in blood vessels and it returns to normal after the vessels settle.
we found out we were autistic with ADHD at 36… we used vlogging to help us affirm our emotions cause nobody else is going to. stay strong every cry adds up over the years. it’s so much to unpack omg… #autism #adhd
Oooh, I feel you on the hair taking forever to dry thing. I have very thick, curly hair and saaaaaame. I'll have to pay more attention when next I shower as to whether I dissociate or anything. I am somewhat averse to showering at times, BUT some of that is fibromyalgia - pain and/or fatigue. People don't think about what a physically active thing showering IS. Standing for 10-15 minutes, arms over your head to wash your hair, bending, standing on one foot... Etc. But this absolutely makes me wonder if there are additional sensory issues there. Thanks Amanda!! So glad I found your channel.
Washing my hair in the sink had made such a difference for me! Unfortunately, it won't work for everyone least how I do it, bending over the sink. My autistic sister tried and she can't bend over long enough to do it because of breathing issues.
I applaud you for asking for help at the Doctor. I'm very DIY too and would just struggle with a form forever and probably either not fill it out, or just write what I think they want to hear. I also have a 3-point pain scale: 1 - I'm fine, 2 - the pain is annoying, but I can deal with it, 3 - I think I'm dying. It usually has to be #3 before I'll even go to the doctor. Autistic life is interesting.
I such a DIYer too. A few years ago when I had intense pain, I started yoga and actually managed the pain for a time with that. But it came back and nothing I did alleviated it so I finally had to go see a doctor.
Hey beautiful! Love your content and you! It helps me look at myself and gain more insight into the things about myself I’ve never considered. I feel more part of a community when I listen to your videos. I am autistic and ADHD. Some of the longer videos are hard for me to tune into - I don’t know how many here are also ADHD but content around 10min mark is much easier for us skittish rabbits 💕🌈❤🐇🙏💕
I know, but I have a hard time being succinct. Remember you can speed up the videos using the settings from 1.25 - 2x. I know a lot of my subscribers do that! 😁
Thanks lovely! I actually like your pace it’s relaxing for me 😂 ah the psychic flux of the spectrum🤪 I was going to suggest two videos instead on one - one on pain and one on hygiene BUT this isn’t about me - you keep doing your amazingness! 🤩🤩🤩
I’m glad you talked about showering. Just yesterday I couldn’t get myself to shower which lead to not going to a Yankee baseball game even though I bought the ticket months in advance. And that I really wanted to go to. I never thought about it being an autistic trait if that’s the right term. Also, it was too much to arrive there 2 or so hours early to get that Roger Maris Bobblehead, that I really wanted. I equated it with depression and anxiety. And throwing in some ADHD.
I find it interesting how I relate more to your autism symptoms than the symptoms of autistic males I watch. I've heard it presents differently in men and women, but I feel more like l have the "female" version than the "male" version, which might be a reason why Ive been flying under the radar.
The more I've been learning and unmasking my autism and talking to other autistic people, especially late diagnosed, the less I like "female presenting" vs "male presenting." I've started to use the language "internal presentation" vs "external presentation." I think culturally internal presentation shows up more in girls because we are often socialized differently than males. We get corrected for "offending behaviors" and males get "boys will be boys." But like anything, this isn't always the case and erases the males that are high masking with the more internal presentation. I hope this helps and feels more inclusive.
I have a high tolerance for pain, soooo those pain scales are difficult. I broke my leg snd only on the second fay did i decide with the logical part of my brain that maybe taking an sntiinflamatory would help. Another time i broke a bone and the pain was ALL I could think about . Women have higher pain tolerances because of cramps and childbirth.
1:33. I discovered/subscribed to your channel only recently and I love it! I can absolutely relate to so many of your videos. Just hearing your ideas, opinions and personal struggles has been such a comfort to me as an autistic adult. Thanks and keep up the good work!
Good for you, for letting the doctor know you needed help and why!!! That's a big step! I can absolutely see how your memory disorder would make it very difficult for you to report pain, since the pain scale is very much "compare what you are experiencing to what you have experienced in the past." My problem with pain isn't memory based - I have a very high pain threshold. That means that my neurons have to be sending a lot more information about pain for me to perceive it as pain, in comparison to many other people. Having my weird, probably autism-related neuro-muscular disorder in an elevated level of tension. What you describe as an "ocular migraine" sounds a lot like the experiences I had when I was about 11 or 12 years old, when this disorder got a lot worse. It was as though my visual field was marbled with static While I didn't feel a lot of pain, there is such a thing as having so much tension where you cannot perceive pain - At the time I didn't know that I have cuts in my visual field. Since they put me on muscle relaxants, I've been doing a lot better. Also, going on muscle relaxants as an early teen meant that when it came to the discipline needed for psych meds, I already had figured out that my meds improved my quality of life and that I had to be diligent with them. - I also wanted to comment about the issue of hygiene. Brushing my teeth is very hard, and I Hate Showers. I hate being wet. The sensation of dampness on my skin. Plus, I am like you in that I am a curvy and well endowed woman. I have almost strait hair, so I can braid it back and ignore it - I just hate perceiving moisture on my body, and I have a lot of places to develop moisture. It doesn't go away, even if I cool the water off to reduce the sweat - my metabolism is very active, so I create a lot of body heat. I basically require a couple of hours to recover from the stress of showering. And then going to work (I only work 2 days a week, 4 hours a day - it's all I can regularly handle), I have to wear a bra. I am very very very sensitive to the smell of mildew. I have an overdeveloped sense of smell. I don't like shoes and socks either, but those aren't quite as offensive to my system than a bra. And of course we are required to wear it long enough for it to get smelling of mildew - even if no one else can smell it. The men who laugh at this should be forced to wear supportive sports undergarments all day. Grumble.
I also have a high pain tolerance things that have other people sitting out, I just ignore. But that honestly isn't healthy and I'm trying to learn to pay attention to pain a bit more. Because when I push through so I don't miss out of an activity, I'm more likely to go into a shutdown mode later. And yes, I hear you on the dampness. I don't like being damp. I struggle with this in washing my hands even. I hate those air dryers and will grab way too many towels at a public restroom but I hate wet hands!
I have a hard time remembering pain as well. Some other people seem to recall bad pain with a visceral response. I remember intellectually that it hurt but I can't really remember what it felt like. I think that this made it easier for me to self harm. I only realized recently that many other people don't forget pain like I do. I hate that O-10 pain scale as well. I just make an educated guess.
Yeah wow, I never thought of it as the type of thing that would b variable in people. I don't think I remember pain much at all. I remember after getting stung by wasps I was shaken up, it was jarring but how it felt with pain, it was uncomfortable. Childbirth, no I don't really know how intense it was, I wanted the epidural and I got it both times
I'm from Germany and I never heard of it. I'm not at the doctor very often so I my expiriences may be limited but I was actually kind of confused (at first) when you talked about the scale on the sheet you had to fill out. But interesting to know.
How do doctors discuss pain with you? Just curious, because this scale doesn't work for a LOT of neurodivergent type people. A different method of communicating pain is needed.
I typically don't have an issue with showering unless I'm super stressed. Then it's exhausting and feels more like a chore that I'm forced to do. But what I am finding I have more trouble with is taking baths for relaxation. I used to do it all the time 20 years ago, but gradually I've stopped doing that. Even if I know the tub is clean, it grosses me out to think of the "people soup," as my bestie calls it, that's been in there. Which kind of sucks because we have a garden tub/shower, and I've only taken a bath in it once since we bought the house 5 years ago.
Thanks for the video and I really would like to support by commenting more. What you described is one of the classic ADHD symptoms. Just a suggestion, Professor Russel Barkeley’s book “Taking charge of adult ADHD” has very comprehensive and detailed coverage on executive functioning deficits and their hacks.
Vanity prevents me from doing that, I do love my curls. Also, maintenance of a shaved head can be a lot depending on how close of a shave you'd want. I do have friends who've shaved their heads because of sensory issues and the loved it! So it's definitely worth considering and isn't permanent if you don't like it. 😊 Edit to add: When I said vanity it is because I adore my own curls (most of the time, lol) but I do like shaved heads on other people. If I wasn't personally attached to my hair I'd totally shave it.
Ella (they/them) on the channel Purple Ella recently shaved their head and loves it! Says it's fun and soothing to stick by rubbing their hands on her new hairstyle. Ella and their husband have the same hairstyle now and made a recent video together, but I haven't seen it. Ella is autistic, has ADHD and fibromyalgia, and also has done educational videos with other neurodivergent RUclipsrs both on her own channel and as a series for the NHS in the UK. Whatever you decide to do, have fun! I've never gone that short myself, but I cut my own hair and find it helpful to remind myself that a new cut or style isn't permanent, just something I'm trying for a little while.
I also grew up in the 50's and 60's when females with straight hair had to curl and fix our hair. My mom was pin curling my hair when I was four. It was scandalous to have straight"stringy" hair. So when I was 48 I had bad carpal tunnel problems. I cut my hair SHORT WITH the hair dresser. I tried using products to make my hair stand up, structured and I felt like a duck out of water. My wrists are fixed and I am putting my long hair up with a clip. Clips are an invention from god.
I have total aphantasia. Tell me does this make sense. There is a space a void between my surface thoughts and my executive function. To the point I get the physical sense that my surface thoughts are experienced in the front of my brain while my executive function seems to come from the back and top of my head. I figure that space is where all of what is missing in my memory would occur. Thanks for the content mindblind
I don’t have aphantasia, but I can totally relate to ‘feeling’ where in my brain different thoughts/memories/ideas/worries and my scripting is done. It seems to me like the stereoscopic field used when mixing music tracks.
@@tracik1277 I'd agree it does seem like music mixing, except forward and back instead of left and right. Which reminds me. I Have no inner monologue as well. Thanks for your perspective
@@tracik1277 So would you say the same about mental imagery. Does the image sit in a part of your head like front, back, left, right, top, bottom or center? Or is that an all encompassing experience?
OMG OMG OMG - thank you for talking about the pain scale thing! OMG I struggled with that! I have arthritis in my cmc joint and when it move it wrong it kills, but if I don't use it it's fine but who doesn't use their thumb? LOL
What kind of tea is in your adorable mug? I’m always looking for new tasty teas to try, though I seek out herbal/uncaffeinated exclusively because my system can’t handle caffeine (too overstimulating). So happy to have stumbled upon your channel-I am sensing that we have a lot in common and it’s wonderful sharing in and learning from your gained wisdom and experience. 💖
I love black tea, but my favorite herbal tea is called Christmas in Paris by the brand Stash. They only sell it at Christmas, but sometimes I see it on Amazon year round. I like it because it's a rich, dark herbal tea. In my mug I was drinking Vanilla Carmel Black Tea by Bigelow. It's my absolute favorite tea for a while now!
I have always hated the pain scale. I also have fibromyalgia so doctors don’t believe what I put on those stupid pain scales anyway. Also, I have wondered for years why I don’t like to take showers. It can take me hours just preparing for a shower. Mentally I mean. I always thought it was because I felt exposed. Maybe that is a part of it. Hot water hurts my skin and maybe that is part of it. I’m 58 and I’m undiagnosed autistic and ADHD. I’m going through the process of diagnosis right now. Not a super fun process. Thank you for posting these videos. They are really helping me to understand myself better.
Some problems of the problems you've faced have more to do with the society you are living in than the disorders you are dealing with, for example, your curly hair, where I live they are considered beautiful , makeup also. Dress to a extent too , of course one is expected to be clean and decently dressed. But there is no given rule. Drs also interact with their patients verbally and take down notes, rather than giving them from to fill. I think that the system there is causing problems for people than anything else ❤❤
Are you Autistic? Did they give you more info on the pain scale or just say "On a Scale of 1-10 what is your pain?" Because with only that I'm LOST. But glad it helps you!
Water feels good if it is the right temp but sweat …YUK …. And the hair thing “””” I wish I could just shave mine OFF. I compromised by shaving the sides. I hate the feeling of my own skin and can’t wear anything (that is not cotton !!!) for very long.
I feel other people’s pain far too much! It’s horrible, it makes me pretty useless to help them (although there have been couple of times I somehow just managed to ‘switch it off’ in order to help them because it was an emergency). The worst is foot injuries (hey Amanda 😮) if someone stubs their toe or cuts their foot or something my legs go weird and tingly up to the knee. I can’t watch films etc where there is injuries. I miss out on loads of good films because of it, but it’s just not worth it because the images (and the sounds) stay with me permanently.
hi tracik. I took all the televisions out of my house 15 years ago. I stopped going to movies after the second jurassic park. I carefully curate my you tube. I move worms, snails and slugs off the pathways so they don't get stepped on. I gently catch spiders in my house to release outside, except for the types that only survive in the house. those get moved to the basement. I feel it for creatures.
Junior counselor...? I've only seen that.... and it was last week.... The camp wouldn't happen to be GGE, was it? Do other camps have junior counselor programs?
Lots and lots of camps have junior counselor programs. When I was a Girl Scout we called them Counselor in Training or CITs. They also can be called Counselor Aides or CAs. I don't know what GGE is.
Not always. I'm a disability advocate so it comes up. And I tell someone if it will impact how I work or engage with that person. But if I'm check out at a grocery store I don't tell them autistic. Well, unless they ask why I'm wearing noise canceling earplugs. I'm not ashamed of my disability and I want to normalize it and make others comfort around me. Does that make sense?
Cold water 💧. I can not stand it. My waterheater is broken. My showers and bath are torture events." I need to be clean.I strongly convince myself as immersion into the Artic Ocean begins. I can't wait till Monday. Just gonna deal with it. It could be winter in the northern hemisphete. I got lucky it's 100 ° F.
Take all the time you need. ❤️ I also hate cold water. When I was a teen my girl scout troop went swimming in the river but I thought it was too cold and wouldn't join them. I missed out on a lot of opportunities like this because cold water is so miserable for me
Okay, seriously if there is ever "Amanda Rambles" merch, I'd happily make a purchase. 🫶🏼 Feel so well represented in these vids. Plus I learn a bunch about various elements of your experiences. And the sound of the words "Amanda Rambles" is just too good! I don't know how to describe it. But all those As and Ms and whatever rhyme scheme is based on the vowel sounds within the word... It's very fun to say and hear 🤭
The pain scale is used here in Ireland, but they also dismiss pain. I had symptoms greatly resembling a stroke about a decade ago. I went to the ER and was completely dismissed- and given Panadol (Tylenol) only- after they asked "Is it the worst headache you've ever had?" and I very honestly answered "no", as I'd had a long history of super-intense migraines. Yet, I was slurring words and weak/numb on one side of my body! I recovered on my own, but I was numb and clumsy for many months and often worry that it was a small stroke.
The pain scale is often reported to be dismissed in America too, especially for female presenting people. And I just have a very hard time with Severely Deficient Autobiographical Memory to remember when or if I was in worse or equivalent pain. Not to mention, why should past pain even matter?
Omg that is terrible, how are you doing now? I can’t help but be reminded of when I had a brain haemorrhage and they asked me a similar question, “Does it feel like you’ve been hit over the head with a brick?” - well how the heck should I know, like most people I’ve never been hit over the head with a brick! I just said it’s the worst pain I’ve ever had, because it was, I thought I might be dying. This was on the phone call. I didn’t call emergency services, I called the NHS Helpline. It didn’t occur to me to call an ambulance and the doctor phoned me the next morning and told me to go to A&E (ER) straight away. I don’t know if it was because I’m Autistic or because I was delirious that I didn’t think to just go myself, but why didn’t they tell me to go on the phone?
@@tracik1277 Thanks for asking, I'm fine now but I had symptoms for quite a long time. I felt as though I was dying as well, but it wasn't the first time a headache had made me feel so bad, and there was an obvious reason for that! I hope you are recovered from your ordeal as well!
@@lilirose72 Yes I am okay now thanks for asking. I was very lucky to get through unscathed.
Pausing at 4:53 because the description mentions the 0-10 pain scale: It helps me to think about 7/10 being pain I can't ignore, and still feel while trying to distract myself. I've also made note of my "baseline" pain for certain things on certain days and use that for comparison. When a medical provider asks "Are you feeling any pain today?" I reply with what I'm feeling compared to the baseline I've memorized: My elbow hurts too bad to do dishes today, for example. Or I didn't have the spoons to shower, and driving made my hip flare from a 4 to a 7. Connecting the subjective measurement to ADL (activities of daily living) helps us understand each other in the appointment, and often makes them take my concerns more seriously, because I explain specific activities I can or can't accomplish - or how much pain i have to push through and come out exhausted.
12:00 While there still are places with strict businesses dress codes, many public-facing jobs in areas like food service and medical clinics allow more hair styles (still with a heavy bias that favors white folks and can be hostile to bipoc folks), piercings, and tattoos.
I have a hard time with my memory on this. I very much live in the now. Sometimes I remember to take notes in my phone. Like I totally forgot to mention to the PT that I'm having difficulty with navigating my stairs at home. I'll have to note it to bring it up at the next appointment. Because I didn't have stairs at the appointment, I wasn't thinking about that limitation with everything else I try to remember to say.
Oh, yeah, the reason I started the above comment: Over the years, masking and disassociation has gotten harder or impossible, and even business casual or mainstream street clothes are usually too much. Cotton lounge pants and a cotton tee with bamboo underwear are my wardrobe almost 24/7 (though I'll change into a fresh outfit 2-3 times a day), and while it's okay to get drive through or go shopping dressed like that, it's obvious I'm not rich or fashionable.
That is so clever! Great tip/advise.
I just procrastinate. With me , if I overheat, my skin gets irritated.
My mother is from a generation where textured hair is considered more "wild" and "less put-together." Even wearing it down too often at a certain length wasn't acceptable. Also mandatory heels, pantyhose, and a full face of makeup. She absolutely loves when my wavy hair is blown out straight or pulled up and away from my face and when I have even minimal makeup on. Such ridiculously high standards. I'm glad professional settings are less brutal, generally, but it's still present and I resent these extra pressures for feminine people, so I resist actively as well as make accommodations for my general challenges as an ND and chronically ill individual.
When I react to people’s pain, whether it’s physically, emotionally, mentally, etc. I don’t think of it in terms of myself, but in terms of how THEY are reacting to it. It’s all that really matters. I know what mystery is like, so I can understand that they are miserable and act accordingly. If that makes sense.
I have struggled with my dread of showering, too! My husband is someone who is more likely to take 2 showers a day than to skip a day, where I sometimes stretch it to once a week. Since I have very dry skin and scalp, it often isn’t so noticeable for me. But if I get sweaty, I get very anxious about needing a shower.
I take a shower about once a week in the winter and a bit more frequently in the summer. I have PTSD issues and sensory issues with showering.
Yeah I stretch it to a week too, also dry skin
You are such an incredible resource. My son broke his ankle last year and I asked him if he remembers the pain he was in when he fell. He didn't remember anything when it came to pain. I am learning so much from you. He remembers not being able to speak and wanting to in preschool but he can't remember pain from last year when he broke his ankle. I am just blown away. Thank you Amanda ❤ I am learning so much from you 🌈✨🌈
Ouch! After recovering from foot surgery, I bet a broken ankle was similar hard recovery. I'm so happy my videos help you and your son. 😁
Same. I am learning so much. I broke the bridge of my nose when I was about 6 but they just thought I had a bruise around the nose and eye cause I had fallen, but was not complaining so I discovered about it oy way later. Same when my 3 vertebrae popped out, I recall blacking out but no pain. 😅
@@krystenme6841wow do u have a different experience of pain? Sounds like it
It frustrates how, with things like the pain scale neurotypical people seem to think they are making communication clearer but they aren’t really unless all people involved are already sharing the same way of thinking. They tend to ask your pain level but then be pretty dismissive with your answer because a large number of people overstate (or overestimate) their level of pain. This is especially compounded with certain groups, like female presenting people, who the medical profession tends to assume are more emotional and prone to psychosomatic symptoms, etc. they also judge a lot based on how a patient is presenting, so a person who looks a certain way is more likely to be dismissed (for example if you look too scruffy then they assume you are just depressed or whatever rather than taking your symptoms seriously, but if you look too well put together then they assume you aren’t suffering too much because they think a really unwell or in pain person would manage to look after themselves that well). This often effects those of us who are neurodivergent a lot because we often don’t visibly or verbally present pain or discomfort in the same ways that neurotypical people tend to. I remember having to be taught by my mum as a child how to ‘look like I was in pain’ when I was being medically examined for something that hurt because when I just sat there blank faced and told them what hurt and how much they wouldn’t ever believe me.
I have a lot of medical issues related to a genetic disability I have and I’ve resorted to downloading a pain scale from the Internet that gives descriptions of what each number means objectively (like 1 is ‘very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain’, 5 is ‘strong, deep, piercing pain such as a sprained ankle when you stand on it wrong or mild back pain. Not only do you notice the pain all the time, you are so preoccupied with managing it that’s normal lifestyle is curtailed’ and 10 is ‘pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident such as a crushed hand and lost consciousness due to pain, not blood loss, have experienced level 10’) so when I’m asked I open that on my iPad and point to the description of the one I feel.
I think having descriptions like that on a pain scale would be helpful because I've had some people say 10 means you'd go to the emergency room. And other people say 8 is emergency room but 10 means you're almost unconscious from the pain. It's like no one really agrees so the scale is useless
I also find the ones with descriptions! It’s not perfect but it’s better. I remember finding one where 7 said something like “avoiding normal tasks due to pain”. Just looking at the little faces I probably would’ve said 3, but truthfully I’d been avoiding stairs for weeks because they hurt my ankles too much. Chronic pain + masking is such a weird combo to try to communicate
i have occular migraines and cant see for a while. the pain comes later. dont worry if that happens again. my ophthalmologist told me that our vision isnt damaged at all. the vision loss is from spasms in blood vessels and it returns to normal after the vessels settle.
Yeah luckily I've only had these kinds of migraines a handful of times but the first time was pretty shocking!
we found out we were autistic with ADHD at 36…
we used vlogging to help us affirm our emotions cause nobody else is going to.
stay strong every cry adds up over the years. it’s so much to unpack omg…
#autism #adhd
Oooh, I feel you on the hair taking forever to dry thing. I have very thick, curly hair and saaaaaame. I'll have to pay more attention when next I shower as to whether I dissociate or anything. I am somewhat averse to showering at times, BUT some of that is fibromyalgia - pain and/or fatigue. People don't think about what a physically active thing showering IS. Standing for 10-15 minutes, arms over your head to wash your hair, bending, standing on one foot... Etc. But this absolutely makes me wonder if there are additional sensory issues there. Thanks Amanda!! So glad I found your channel.
Washing my hair in the sink had made such a difference for me! Unfortunately, it won't work for everyone least how I do it, bending over the sink. My autistic sister tried and she can't bend over long enough to do it because of breathing issues.
I applaud you for asking for help at the Doctor. I'm very DIY too and would just struggle with a form forever and probably either not fill it out, or just write what I think they want to hear. I also have a 3-point pain scale: 1 - I'm fine, 2 - the pain is annoying, but I can deal with it, 3 - I think I'm dying. It usually has to be #3 before I'll even go to the doctor. Autistic life is interesting.
I such a DIYer too. A few years ago when I had intense pain, I started yoga and actually managed the pain for a time with that. But it came back and nothing I did alleviated it so I finally had to go see a doctor.
Hey beautiful! Love your content and you! It helps me look at myself and gain more insight into the things about myself I’ve never considered. I feel more part of a community when I listen to your videos. I am autistic and ADHD. Some of the longer videos are hard for me to tune into - I don’t know how many here are also ADHD but content around 10min mark is much easier for us skittish rabbits 💕🌈❤🐇🙏💕
I know, but I have a hard time being succinct. Remember you can speed up the videos using the settings from 1.25 - 2x. I know a lot of my subscribers do that! 😁
Thanks lovely! I actually like your pace it’s relaxing for me 😂 ah the psychic flux of the spectrum🤪 I was going to suggest two videos instead on one - one on pain and one on hygiene BUT this isn’t about me - you keep doing your amazingness! 🤩🤩🤩
I’m glad you talked about showering. Just yesterday I couldn’t get myself to shower which lead to not going to a Yankee baseball game even though I bought the ticket months in advance. And that I really wanted to go to. I never thought about it being an autistic trait if that’s the right term. Also, it was too much to arrive there 2 or so hours early to get that Roger Maris Bobblehead, that I really wanted. I equated it with depression and anxiety. And throwing in some ADHD.
I find it interesting how I relate more to your autism symptoms than the symptoms of autistic males I watch. I've heard it presents differently in men and women, but I feel more like l have the "female" version than the "male" version, which might be a reason why Ive been flying under the radar.
The more I've been learning and unmasking my autism and talking to other autistic people, especially late diagnosed, the less I like "female presenting" vs "male presenting."
I've started to use the language "internal presentation" vs "external presentation."
I think culturally internal presentation shows up more in girls because we are often socialized differently than males. We get corrected for "offending behaviors" and males get "boys will be boys." But like anything, this isn't always the case and erases the males that are high masking with the more internal presentation. I hope this helps and feels more inclusive.
The "female" or "male" type of autism can be experienced by anyone. I am a mix of both.
I have a high tolerance for pain, soooo those pain scales are difficult. I broke my leg snd only on the second fay did i decide with the logical part of my brain that maybe taking an sntiinflamatory would help.
Another time i broke a bone and the pain was ALL I could think about .
Women have higher pain tolerances because of cramps and childbirth.
1:33. I discovered/subscribed to your channel only recently and I love it! I can absolutely relate to so many of your videos. Just hearing your ideas, opinions and personal struggles has been such a comfort to me as an autistic adult. Thanks and keep up the good work!
Good for you, for letting the doctor know you needed help and why!!! That's a big step! I can absolutely see how your memory disorder would make it very difficult for you to report pain, since the pain scale is very much "compare what you are experiencing to what you have experienced in the past." My problem with pain isn't memory based - I have a very high pain threshold. That means that my neurons have to be sending a lot more information about pain for me to perceive it as pain, in comparison to many other people. Having my weird, probably autism-related neuro-muscular disorder in an elevated level of tension. What you describe as an "ocular migraine" sounds a lot like the experiences I had when I was about 11 or 12 years old, when this disorder got a lot worse. It was as though my visual field was marbled with static While I didn't feel a lot of pain, there is such a thing as having so much tension where you cannot perceive pain - At the time I didn't know that I have cuts in my visual field. Since they put me on muscle relaxants, I've been doing a lot better. Also, going on muscle relaxants as an early teen meant that when it came to the discipline needed for psych meds, I already had figured out that my meds improved my quality of life and that I had to be diligent with them.
- I also wanted to comment about the issue of hygiene. Brushing my teeth is very hard, and I Hate Showers. I hate being wet. The sensation of dampness on my skin. Plus, I am like you in that I am a curvy and well endowed woman. I have almost strait hair, so I can braid it back and ignore it - I just hate perceiving moisture on my body, and I have a lot of places to develop moisture. It doesn't go away, even if I cool the water off to reduce the sweat - my metabolism is very active, so I create a lot of body heat. I basically require a couple of hours to recover from the stress of showering. And then going to work (I only work 2 days a week, 4 hours a day - it's all I can regularly handle), I have to wear a bra. I am very very very sensitive to the smell of mildew. I have an overdeveloped sense of smell. I don't like shoes and socks either, but those aren't quite as offensive to my system than a bra. And of course we are required to wear it long enough for it to get smelling of mildew - even if no one else can smell it. The men who laugh at this should be forced to wear supportive sports undergarments all day. Grumble.
I also have a high pain tolerance things that have other people sitting out, I just ignore. But that honestly isn't healthy and I'm trying to learn to pay attention to pain a bit more. Because when I push through so I don't miss out of an activity, I'm more likely to go into a shutdown mode later.
And yes, I hear you on the dampness. I don't like being damp. I struggle with this in washing my hands even. I hate those air dryers and will grab way too many towels at a public restroom but I hate wet hands!
I have a hard time remembering pain as well. Some other people seem to recall bad pain with a visceral response. I remember intellectually that it hurt but I can't really remember what it felt like. I think that this made it easier for me to self harm. I only realized recently that many other people don't forget pain like I do. I hate that O-10 pain scale as well. I just make an educated guess.
Yeah wow, I never thought of it as the type of thing that would b variable in people. I don't think I remember pain much at all. I remember after getting stung by wasps I was shaken up, it was jarring but how it felt with pain, it was uncomfortable. Childbirth, no I don't really know how intense it was, I wanted the epidural and I got it both times
I'm from Germany and I never heard of it. I'm not at the doctor very often so I my expiriences may be limited but I was actually kind of confused (at first) when you talked about the scale on the sheet you had to fill out. But interesting to know.
How do doctors discuss pain with you? Just curious, because this scale doesn't work for a LOT of neurodivergent type people. A different method of communicating pain is needed.
I typically don't have an issue with showering unless I'm super stressed. Then it's exhausting and feels more like a chore that I'm forced to do. But what I am finding I have more trouble with is taking baths for relaxation. I used to do it all the time 20 years ago, but gradually I've stopped doing that. Even if I know the tub is clean, it grosses me out to think of the "people soup," as my bestie calls it, that's been in there. Which kind of sucks because we have a garden tub/shower, and I've only taken a bath in it once since we bought the house 5 years ago.
O dear that is unfortunate that u can't enjoy baths now
Thanks for the video and I really would like to support by commenting more. What you described is one of the classic ADHD symptoms. Just a suggestion, Professor Russel Barkeley’s book “Taking charge of adult ADHD” has very comprehensive and detailed coverage on executive functioning deficits and their hacks.
I have all problems. Hair on my face really bothers me and having it on my neck hurts. I’ve been contemplating shaving my hair off. How about you?
Vanity prevents me from doing that, I do love my curls. Also, maintenance of a shaved head can be a lot depending on how close of a shave you'd want. I do have friends who've shaved their heads because of sensory issues and the loved it! So it's definitely worth considering and isn't permanent if you don't like it. 😊
Edit to add: When I said vanity it is because I adore my own curls (most of the time, lol) but I do like shaved heads on other people. If I wasn't personally attached to my hair I'd totally shave it.
Ella (they/them) on the channel Purple Ella recently shaved their head and loves it! Says it's fun and soothing to stick by rubbing their hands on her new hairstyle. Ella and their husband have the same hairstyle now and made a recent video together, but I haven't seen it.
Ella is autistic, has ADHD and fibromyalgia, and also has done educational videos with other neurodivergent RUclipsrs both on her own channel and as a series for the NHS in the UK.
Whatever you decide to do, have fun! I've never gone that short myself, but I cut my own hair and find it helpful to remind myself that a new cut or style isn't permanent, just something I'm trying for a little while.
@@gamewrit0058 yeah, I watch her, too. I shaved it when I was younger. Haven’t decided yet
I have just done mine this week! Zzzzzzzzz😊
I also grew up in the 50's and 60's when females with straight hair had to curl and fix our hair. My mom was pin curling my hair when I was four. It was scandalous to have straight"stringy" hair. So when I was 48 I had bad carpal tunnel problems. I cut my hair SHORT WITH the hair dresser. I tried using products to make my hair stand up, structured and I felt like a duck out of water. My wrists are fixed and I am putting my long hair up with a clip. Clips are an invention from god.
Also, I used to get ocular migraines too! I haven't had one for a while.
17:00 👏🥳 Wonderful! So proud of you. I'm going to do this with medical forms more often.
I have total aphantasia. Tell me does this make sense. There is a space a void between my surface thoughts and my executive function. To the point I get the physical sense that my surface thoughts are experienced in the front of my brain while my executive function seems to come from the back and top of my head. I figure that space is where all of what is missing in my memory would occur. Thanks for the content mindblind
I don't think my experience is the same as what you shared, but curious if others relate to that! 😊
I don’t have aphantasia, but I can totally relate to ‘feeling’ where in my brain different thoughts/memories/ideas/worries and my scripting is done. It seems to me like the stereoscopic field used when mixing music tracks.
@@tracik1277 I'd agree it does seem like music mixing, except forward and back instead of left and right. Which reminds me. I Have no inner monologue as well. Thanks for your perspective
@@wechosenfew7622 It’s not just left and right it’s like a sphere.
@@tracik1277 So would you say the same about mental imagery. Does the image sit in a part of your head like front, back, left, right, top, bottom or center? Or is that an all encompassing experience?
OMG OMG OMG - thank you for talking about the pain scale thing! OMG I struggled with that! I have arthritis in my cmc joint and when it move it wrong it kills, but if I don't use it it's fine but who doesn't use their thumb? LOL
Much needed,also this time around. Thank you!
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What kind of tea is in your adorable mug? I’m always looking for new tasty teas to try, though I seek out herbal/uncaffeinated exclusively because my system can’t handle caffeine (too overstimulating). So happy to have stumbled upon your channel-I am sensing that we have a lot in common and it’s wonderful sharing in and learning from your gained wisdom and experience. 💖
I love black tea, but my favorite herbal tea is called Christmas in Paris by the brand Stash. They only sell it at Christmas, but sometimes I see it on Amazon year round. I like it because it's a rich, dark herbal tea.
In my mug I was drinking Vanilla Carmel Black Tea by Bigelow. It's my absolute favorite tea for a while now!
Thanks for talkibg about the hygienie issue. Bless
It's important to discuss! 🙂
I have always hated the pain scale. I also have fibromyalgia so doctors don’t believe what I put on those stupid pain scales anyway.
Also, I have wondered for years why I don’t like to take showers. It can take me hours just preparing for a shower. Mentally I mean. I always thought it was because I felt exposed. Maybe that is a part of it. Hot water hurts my skin and maybe that is part of it. I’m 58 and I’m undiagnosed autistic and ADHD. I’m going through the process of diagnosis right now. Not a super fun process. Thank you for posting these videos. They are really helping me to understand myself better.
Yeah, struggle with showers is a challenge for many of us. ❤️
🐱 love the mug ❤
I hate being cold! Getting out of the shower into a cold room is torture!
I so agree
I don't have a problem with the actual shower. Toweling off is my nightmare.
In certain Companies it still is. I worked with Dior and I got a call from management cause I didn’t have the eyeliner or enough makeup....
Oh wow! That's just so silly.
This is off topic but you have amazing eyes. Sometimes they look green and sometimes pinkish gray or sage green. Anyway beautiful. That’s all ❤
Thank you! 😍
😻☕ Cute tea mug!
Thank you! It was a gift from my husband. It brings me joy! 😊
Some problems of the problems you've faced have more to do with the society you are living in than the disorders you are dealing with, for example, your curly hair, where I live they are considered beautiful , makeup also. Dress to a extent too , of course one is expected to be clean and decently dressed. But there is no given rule. Drs also interact with their patients verbally and take down notes, rather than giving them from to fill. I think that the system there is causing problems for people than anything else ❤❤
I find the pain scale very useful. I had to go into the ER a few months ago, it was a large lelp
Are you Autistic? Did they give you more info on the pain scale or just say "On a Scale of 1-10 what is your pain?" Because with only that I'm LOST. But glad it helps you!
They just gave me a scale.
Thak you for your help. Could you make a vlog on slecting a new doctor?
Water feels good if it is the right temp but sweat …YUK …. And the hair thing “””” I wish I could just shave mine OFF. I compromised by shaving the sides. I hate the feeling of my own skin and can’t wear anything (that is not cotton !!!) for very long.
I know several autistic people who have shaved or partly shaved heads. Hair is a big sensory ick.
I feel other people’s pain far too much! It’s horrible, it makes me pretty useless to help them (although there have been couple of times I somehow just managed to ‘switch it off’ in order to help them because it was an emergency). The worst is foot injuries (hey Amanda 😮) if someone stubs their toe or cuts their foot or something my legs go weird and tingly up to the knee. I can’t watch films etc where there is injuries. I miss out on loads of good films because of it, but it’s just not worth it because the images (and the sounds) stay with me permanently.
hi tracik. I took all the televisions out of my house 15 years ago. I stopped going to movies after the second jurassic park. I carefully curate my you tube. I move worms, snails and slugs off the pathways so they don't get stepped on. I gently catch spiders in my house to release outside, except for the types that only survive in the house. those get moved to the basement. I feel it for creatures.
@@tracirex I am exactly the same as everything you said!
Junior counselor...? I've only seen that.... and it was last week.... The camp wouldn't happen to be GGE, was it? Do other camps have junior counselor programs?
Lots and lots of camps have junior counselor programs. When I was a Girl Scout we called them Counselor in Training or CITs. They also can be called Counselor Aides or CAs. I don't know what GGE is.
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The water is painful to me idk why it’s annoying I wanna be normal on this subject
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I recently discovered that the normal pain level is ZERO!!!! 😳
Right? I can't even remember when I had a day with no pain. What a joke.
do you tell everyone you meet your disability is
Not always. I'm a disability advocate so it comes up. And I tell someone if it will impact how I work or engage with that person. But if I'm check out at a grocery store I don't tell them autistic. Well, unless they ask why I'm wearing noise canceling earplugs. I'm not ashamed of my disability and I want to normalize it and make others comfort around me. Does that make sense?
how old is your son
He's a teenager
Cold water 💧. I can not stand it. My waterheater is broken. My showers and bath are torture events." I need to be clean.I strongly convince myself as immersion into the Artic Ocean begins. I can't wait till Monday. Just gonna deal with it. It could be winter in the northern hemisphete. I got lucky it's 100 ° F.
I had edit this 2x . I have dementia. I ask for some patience. I need to keep texting or I will lose more language skills.
Take all the time you need. ❤️ I also hate cold water. When I was a teen my girl scout troop went swimming in the river but I thought it was too cold and wouldn't join them. I missed out on a lot of opportunities like this because cold water is so miserable for me
Okay, seriously if there is ever "Amanda Rambles" merch, I'd happily make a purchase. 🫶🏼
Feel so well represented in these vids. Plus I learn a bunch about various elements of your experiences.
And the sound of the words "Amanda Rambles" is just too good! I don't know how to describe it. But all those As and Ms and whatever rhyme scheme is based on the vowel sounds within the word... It's very fun to say and hear 🤭
Aw thank you! Amanda Rambles is pretty fun to say. 😊 I'm glad you like my off the cuff videos.