Living when you can't Remember. SDAM: A memory Disorder
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- Опубліковано 1 вер 2022
- SDAM, severely deficient autobiographical memory, is a memory disorder where you don't relive memories in first person. You may have facts about your past, but they aren't relived memories.
This is not a medical channel, I am not giving out medical advice, just my personal experience. And everyone with these neurodivergencies will have their own unique experiences.
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This sounds exactly like me. I can't "remember" with emotional response, it's much more facts-based. I can't remember nearly all of my wedding, very little from the birth of my children, other big events, deaths/funerals, etc. I can't connect to photos of myself, or my childhood - I'm just like, "Oh, I look like I must have been happy there, that's cool." It makes me most sad that I can't remember my children's baby and toddler years :(
Yep, sounds very much like my experience. But at the very least maybe you have a name for your memory loss. I know that provided me some comfort because I used to be worried I had early alzheimers or something. Sending hugs.
Yes! I remember I had a traumatic birth with my first son but I don't recall the details and my father died when I was 17 and I can barely recall one memory, I know what kind of person he was and I know we had a good relationship but it's really weird.
That sounds like me. I thought ptsd or DID caused the big blank spots. And that could be true. But not remembering my children as babies/toddlers is the worst.
This is so like me, also I don’t remember people really so I don’t miss them when they’re not there, even when they’ve died. Kind of an upside I suppose 🤨
Yes! This is definitely something I seem to have. I’ve had so much trouble describing what I experience to other people. The vast majority of my memories are like reading an itinerary. Just a bunch of bullet points. Completely impersonal, with no visuals. I essentially can use that basic info, combined with stories from other people to conjure a visualization. But that’s just a false memory, not true recall!
So can you visualize in your mind? I have Aphantasia too so no visuals. But only about half the people with SDAM also have aphantasia.
Definitely not confusing, I live in a neurodivergent family and what you are describing is exactly what my husband experiences and I expect my daughter does too. I am the opposite. One time my therapist asked me to recall a negative experience I had during lockdown, and I became very severely distressed. She had to stop me and guide me through grounding exercises. She commented that my emotions were so strong, it was like I was transported back to that time. I was so confused .... after all she asked me to remember and describe what happened. I don’t know how else to remember except for reliving the experience. Its like an emersive video with sound, touch, taste smell and emotions. Its amazing how very differently our brains can do the same thing.
That's not confusing, it's eerily familiar. I self diagnosed aphantasia a few years ago, got official ADHD last spring and I am lined up for an autism test in a few months (definitely gonna be on the spectrum by my reckoning). Now I have another diagnosis to research. I have had memory problems all my life and aphantasia explained some of it but not all of it. I can see some things. I definitely don't experience memories in the first person. More like vague snapshots of places. Same with on demand recall, not a blank mind but not something I can hold there. Thank you for your videos, I'll be doing a dive into your back catalog tomorrow.
There is a very high corolation of people with aphantasia and SDAM. The most recent study suggests 51% overlap. Of course both are still being studied and more is being learned all the time. Feel free to ask questions. I'm not an expert, but willing to share what I know!
I was diagnosed with Asperger's or high functioning autism... Classes in school were hard mainly writing notes, mental math, making & keeping friends, reading facial expressions & body language, etc. I also realize that I most definitely have Aphantasia, I don't have the ability to visualize things how most would describe as their 'mind's eye'. And now this, SDAM, I don't remember anything from 13 or under & what I do remember (tho I can never say exactly how old I was just a range) & everything over 13 to now (I'm almost 21 btw), I remember the main points & if there's photos than I have a better time recalling things but I am unable to relive them...
Sounds like you might also have SDAM. There are other reasons for memory loss too, but it could give you something to look into and 51% of people with sdam so have aphantasia
Hi Amanda, I'm very glad I found your channel. I have exactly the same neurodivergencies as you do. Autism, ADHD, aphantasia, and SDAM. I only recently realized SDAM was a thing, but as soon as I did, I knew it explained everything. Now I don't really know how to feel. I suppose I'm relieved to know why I'm so different and why I don't have any real childhood memories. Why I forget almost everything that happened yesterday if I don't write it down. A silver lining is that I don't have any issues with the serious trauma that I've experienced as a teenager, because I can barely recall anything about the events that took place. I know the facts of what happened, but there's no feelings or sensations attached. On the other hand, I'm very sad at the thought that all the good 'memories' I'm making with my husband and baby boy now, will keep fading away and there's nothing I can do about that. I can use pictures to remind myself of things that I did, but it's a poor substitute at best. How do you deal with this? Sorry for writing a whole essay.
I grapple with it still. Mostly I just live in the present. Photos really are a poor substitute since they don't bring back any memories. It's just documentation that I did in fact do things.
Hi Amanda! Thanks for responding. I'm having better and worse moments, but I'm trying to think about it like this. Nothing has changed since I've found out my memory is different. I've known I'm different for a long time, so that's nothing new either. Indeed just trying to live in the present seems to be our best option. I've also found videos are better than pictures, but neither can replace actually reliving an experience I suppose :(.
Thanks for wording out the exact same thing I wanted to write!
Kylie, I just always thought this was just my normal or that I was blocking memories due to childhood trauma. I can't pin point all of the trauma but I know it happened as it happened to two of my sisters as well. However, I was the only one who had poor memory... things just fade away. Like I can watch a movie or read a book but if you ask me what it was about... very difficult to tell... upside is I can re read a book or watch that same movie over like it's the first time... but I do remember bits as I am re reading or re watching... Also, no visuals in my mind ever. For the most part I don't dream. Though there have been a few times I did dream... but it's very rare. So, here I am in my 70's and I never heard about aphantasia and SDAM... so, it's good to know this is an actual condition. Thanks for your comment as it mirrors my life...
I also have aphantasia, SDAM, and a late autism diagnosis.
All of my memories are factual memory. So I'm great at remembering facts. But that's all I can remember. I can't remember my last birthday or last Christmas other than a few facts. Like I know we bought our kids a Nintendo Switch for Christmas but I have no idea what we did that day, whether we left the house, how the house was decorated, I assume we had a Christmas tree up but I have no idea where in the room it was because we don't put it in a consistent place every year. I don't know what we ate. I know that my youngest son must have been there but only by deducing that from the fact that he was born in February last year so he must have been. But I don't remember him being there at all.
Sometimes when people tell me what happened or if I watch an old video or look at a photo of an event it will feel familiar and I sort of remember that it happened, but don't actually remember anything else other than just the fact that I know that it happened. But often I won't remember it at all and I may as well be watching a video of someone else's life.
All so familiar...
I had no idea this existed and it's ringing a lot of bells for me. It would explain my struggles with certain memories despite the fact that I scored very highly on memory testing as a child (and am still blessed a very good memory in other areas). The way you describe factual listing of experiences is how I was *just* describing my issue with memories to my friend when I saw the description of SDAM on your about. I also feel like the fact that I never journalled exacerbates this issue with myself as I find certain things easier to remember when noted or written. Thank you so much for sharing your experiences, I greatly appreciate it ♥ (Oh also I'm a fellow aphantasiac, ADHDer and I suspect - autistic person! o/ )
glad I found this video. have always lamented and wonder what is wrong with me when I cannot remember stuff after they happened unless I jot them down.when it's written down it becomes a fact and I can remember facts but not emotions and placing myself there. always felt like something was lacking in my life
There are many reasons for memory loss, I know when I first heard of SDAM it sounded like a fit but not quite. The first account I heard the woman's memory was even worse than mine. But I've learned like anything with a brain there is a spectrum of complexity involved and the more I read about SDAM and listened to other's accounts the more I realized that this is what is going on with my brain. I'm glad to have provided you a direction to look and a possible answer to your memory issues too. 😊
Thank you so much for your videos 🙏. I've known to be aphantasic for almost 10 years now but listening to you just have made me realize my somehow weird personal events memory is more than my aphantasia. Your experience sounds just like me and I just felt suddenly overwhelmed and ready to cry. Thank you , you gave me much to think about.
Sorry for my english. I'm not fluent.
I honestly wouldn't know, your English was perfect. I'm so in awe of people with more than one language and to talk about complex things in your non-native language extra impressive. I've always struggled with language learning. I've tried to learn other languages, French, Spanish and American Sign but my brain really struggles to learn other languages. SDAM and Aphantasia have a high rate of going together. About 51% of people with SDAM also have Aphantasia from a recent study.
@@i.am.mindblind yep I have both and I have no inner monologue
I thought I would expand on my SDAM and other conditions. I can’t picture things or people in my head. I don’t remember doing things in the past even with photograph evidence. I can watch the same movie for the first time over and over. But I have a good marriage and am a paralegal, and it doesn’t affect physical skills at all. I couldn’t tell you if my friend wears glasses if I am not looking at her. I dont admit this to anyone I am not very close with. Like I was told I went to knotsberry farm with a grandmother, saw a picture, and I still swear I never met her or went there. It makes me feel bad sometimes. Mostly I don’t think about it. I’m 65 now and it’s been forever. I don’t remember school experiences or teachers……. I do have a great memory for voices though. Go figure….
I made a Tiktok about a childhood story (since I don't remember it, I just know the story about it.) My cousin saw the tiktok and said she was there and remembers it! I didn't know she had been there. I don't remember that at all! It'd so wild.
I’m right here with you. I describe my memories as being in text format. Writing things down also helps me. I also struggle to remember things that I don’t make note of in said text file.
Writing helps me too. But I need to be consistent in where I write the thing down! Lol, I wrote a doc appointment time and date in a notebook but now don't remember which one! I'm probably going to have to call the office to get the time again. Oops.
@@i.am.mindblind luckily my doc calls me two days before. I don’t even try to remember.
Wait... You mean that's not just everyone?! I always thought Hollywood was taking artistic liberty when they depict a memory or flashback. I've always seen myself in 3rd person in my memories. The only reason I knew there was a difference was because I can have very vivid 1st person dreams (usually nightmares), but never that clear in my waking life.
I also have always had difficulties remembering, but since I grew up with the repeated phrase of, "Well just get better at remembering!" I thought it was just a personal failing. I genuinely have a difficult time remembering most anything I've done, and it's caused a lot of depression. I know logically that I have done some really cool things, but the sense memory of it is just not there.
I wonder if this is why I can't remember ever having had autistic meltdowns. Or at least never around other people. Such "acting out" was severely punished. I've just spent most of my life since childhood in a dissociative fugue.
There are other causes for memory loss. SDAM is just one that fits me best. Dissociative Identity Disorder is another which I mention because you mentioned being dissociated. It's another disorder that is underdiagnosed. And surprisingly enough often doesn't get diagnosed until late 20s-30s. There are also PTSD memory issues too. I'd do some more reading/watching up on it and see what fits best. ❤️
I have SDAM too. Hard to remember events and can't "relive" them. Worked at Ford Motor for 34 years and can hardly remember it. Can't relive fun times either. This started coming on about 15 years ago.
Hum, usually SDAM is a lifelong disorder. I know as a kid I was confused about memory and worried there was something wrong with me. This is my understanding though, I could be wrong.
Wow I believe I have it too! It’s a relief to realize this is a thing other people struggle with! I get so sad that I can’t remember my life. Even if a friend shows me a picture with ME in it, I still can’t remember the experience! It’s frustrating. I’m looking forward to finding out how I can get more info. How did you get diagnosed?
For me, writing stuff down has always been about giving myself permission to forget those details, with the assumption that I can read what i wrote and recall the details, that way. All through my college classes, I was often the only person not taking notes, but instead, carried on a running conversation with the professor, while everyone else wrote what I asked and what the answer was. But, by being involved in the discussion. I retained a vivid memory of it and never had to study that content, again.
I just found your channel and already learned a lot by watching your videos and reading comments. First of all: Thank you so much for your work!
Your description of SDAM feels so familiar to me, even if I can't really tell yet how everything fits together. I'm also autistic (pda profile), have adhd and aphantasia. I have ptsd as well, so not sure where my memory specialties exactly come from.
Do you, or anyone who may read this, know about links between SDAM, alexithymia (emotional blindness), prosopagnosia (face blindness) and/or time blindness? To me it feels like there could be some overlap, similar to how aphantasia may be linked?
Adhd has established timeblindness. I feel like perhaps I also have prosopagnosia with aphantasia, like it's a possible sub condition? But I'm not sure. I do eventually recognize faces, but I'm never quite confident either.
I’m F63. Often I’m thinking: What did the person I just talked to wear, and I usually can’t remember. I just know that they had something on, because I would have remembered if not. I only remember if they had on something that I found really nice or ugly and thought about it during the meeting.
Lol, I've thought that too. Trying to wrack my brain to remember what someone wore, but unless it stood out to me, nope. Not going to remember.
I'm like that too and living with neurotypicals is difficult.
I’ve never heard of SDAM before today! (Which is odd because I have an adult child on the spectrum and who teaches me a lot about neurodivergence, and we’ve been coming to the conclusion that I am also ND and most likely so are a few other people close to us.) I’ve always said I have “things” - behaviors, tendencies, interests, etc - that are a bit odd or unusual or just flat-out weird, and I’m suspecting this is one of my “things”.
If it is SDAM, that would explain SO MUCH. I started keeping diaries as a kid, maybe 11 years old, and I have very few memories that I didn’t write down. A lot of the memories I do have aren’t like first-person but more like a photocopy of a photocopy of a photocopy - fuzzy and vague and lacking definition, because they’re kind of just things I’ve heard and/or repeated so many times that they may as well be memories. But they feel distant.
My mom & sister who are definitely not neurodivergent (to any noticeable degree) both will say things like, “Remember that guy John who I used to date?” Nope. “But we were together for like 8 or 9 months!” Nope, don’t recall this person at all. And that kind of thing happens constantly, I just don’t remember AT ALL people or things that weren’t a major part of my life.
Thank you for bringing awareness about this. I’m going to learn more and try to discover if this is one of my “things”.
SDAM isn't very well known I don't think. It was only discovered in I think 2015. It's still being researched and not in diagnostic manuals yet.
Thanks for your videos. I've never heard of SDAM before, although I have been learning about autism and neurodivergence since about 3,5 years (when I got my autism diagnosis). SDAM feely very relatable to me. Until now I used to think that I can't remember most of my past life because of trauma. Since I also cannot remember all the good times I had it might be SDAM. I'll definitely dive deeper into that topic.
Apart from that: is aphantasia also a spectrum? I feel like I have a mild form of it. I am not 100% unable to remember how something looks but could never paint something out of my mind and cannot visualise anything my psychologists want me to (they never believe me when I tell them that it's not working).
Aphantasia is a spectrum, although a lot of Aphants think they can sort of visualize at first but then the more they sit with it and really think about it, we are just good at painting a non-Picture in our heads with words. For instance when I think of what my husband looks like, I think of descritive words so fast it sort of seems like I'm seeing his image but then I realize I'm not. There's no image just word thoughts. But yes, many people say they can sort of see an outline of an image but nothing enough to have a functional use out of their imagery all the way up to 3d manipulative imagary in someone mind. That is called hyperphantsia.
Your videos are so helpful. Part of the way I process things I feel I’ve done wrong is to go over and over it in my mind. Are you able to do this with SDAM & Aphantasia? I realise my overthinking may not be the best way to deal with things, but I’m interested in how you deal with those kind of emotions like regret? I hope you don’t mind me asking this.
I have a hard time ruminating over the past since my memory is mostly a list of facts. But I have thought back to stuff and the facts shift to a different perspective with an autisitc view point if that makes sense?
Is that not normal, this is how my memory works.. I don't remember alot of things unless I specifically mentally make a note of it, I also don't remember things I haven't shared with someone else before. Sometimes I'm not sure if the thing I vaguely know about really happened or if I just heard it from someone else. I do remember really traumatic/embarrassing/ intense moments though but I never relive them, it's like I'm looking at a set of facts without the emotions.
You may want to look into SDAM further. Most people have better memory recall. If not SDAM there are other memory disorders too. Do you have Aphantasia?
My problem got worse with long covid and never got back to how it was before the infection, but always existed to a degree and I think maladaptive daydreamin might be thr main cause. My practical problems from it are not remembering important details of conversations, important details from work, leading me to lose my career after I caught covid in 2020, it got so bad. And not knowing.WHEN things happened can impair functioning, too. It is all a jumbled mess, I have a vague sense of having had a conversation or a hair cut or ordered an item or resolved an admin issue some time in the last six months but it could have been two months or six months ago. Remembering hearing "I will phone you on Tuesday" is no good if I can't remember if that was said last week or the week before, and I can't remember whether or not there was a phone call last Tuesday (there ws, and I had forgotten it as having been that planned follow up, just a vague memory of a recent phone call without that important context)
People ask me at work how was yesterday was it busy and I always say oh I don't know the days run together but really I can't remember what happened. Other coworkers will have all sorts of details about the day and I'm like oh yeah that happened! I can't do the games that have you look at a scene and then try to remember details or objects in the image. I also can't do math in my head only on paper. I can't see it in my head lol. I also would cry when I went to camp because I couldn't remember what my mom and dad looked like. The counselors couldn't really understand this.
So relatable. ❤️
I don't think I have a lot of emotional attachment to my memories, but I have a very robust visual memory. My visual memory is not very detailed, but it's well connected. Like I have thousands upon thousands of spatially coherent snapshots. Bit blurry on details, but geometrically right. I can easily navigate streets by my years old memories, assuming not much had changed since. But emotionally my event memories those do feel like blurry images strung like beads on a verbal description. A very specific point of view and me recalling my earlier verbalization of that memory. Who did what to whom, etc.
On the other hand, I seem to have PTSD episodes, that are suppssedly gets triggered by something that reminds me of an earlier scary or upsetting memory, but I can't figure out what
I wonder if I have something like this, but I don't know how little memory you have to have, or how they measure how much memory you have.
I too am diagnosed with autism and ADHD, however, unlike you, I have a VERY vivid, engrossing, multisensory mind's eye, and I am a maladaptive daydreamer, meaning I compulsively escape into fictional stories in my mind instead of being present to my own life, and instead of what most people do by default when they are not concentrating on a task, which is mind wandering. People with maladaptive daydreaming don't do enough mind wandering (thinking about our own lives and experiences and futures - god how boring!), we daydream (make up fictional stories) instead. It is a habitual coping skill that gets ingrained as more of an addiction, and can be reversed, unlike aphantasia if I am not mistaken. But what these have in common is that theoretically it seems they could impair autobiographical memory. Aphantasia and maladaptive daydreaming in opposite ways must make the brain lay down fewer experiences into memory, how could they not? I have diligently ignored everything going on around me since I was a tween. I remember my daydreams cos those are what I focus on!
But how much autobiographical memory is enough, how is that tested for?
Oh wow, relate. Is the aphantasia and sdam totally related to ASD ??? You’ve been first person to discuss this who talk on ASD ??? Thanks 💞👊
Aphantasia and SDAM are not related to Autism. Many Autistic people have amazing visualization skills and memory. I do think people with one Neurodivergency are prone to others. But Autism is it's own separate diagnosis and then people can have commoridity of other diagnoses. I have seen some research into if aphantasia is more prevelant in Autistic people but I haven't heard the results of that research.
An autobiography consists of chapter titles and headings and not necessarily in chronological order
I think I have some sort of semi-aphantasia (I don't know if there's a separate term for it). Before I heard and read about aphantasia, I just thought everyone visualised things the same way as me. I can visualise things, but it's like the sort of "graphics engine" in my mind is very low-end, so everything is kind of very low-resolution, blurry and undetailed. And my memories, imagination and dreams all run on the same engine; things are represented the same way in all of them. So I also tend to struggle to remember details like what people were wearing, unless I happened to specifically notice those details at the time for some reason. The only exception I've found is that immediately after looking at something and looking away, I can usually kind of keep it in my head in more detail for a few seconds, but that quickly fades away even if I focus on trying to hold onto it.
One thing I never quite understood was how it could be possible for people to not know whether they're dreaming or not - it's always very obvious for me that I'm not dreaming because dreams "look" nothing like reality for me (I just don't tend to think of it while I'm actually asleep and dreaming), but I've since asked my girlfriend about it, and for her they apparently actually are so visually detailed and close to reality that there is no noticeable difference to reality, which I can't even imagine how that can be possible.
I'd never heard of SDAM before, but now that you mention it, I think I possibly also have a mild form of that too (but not as much as you). And I also definitely have autism (diagnosed as Asperger's). So I wonder how much these things are all related/linked?
I don't often remember my dreams. But on occasion I do wake up remembering and only sometimes I remember if I had visuals. From my understanding it's different areas of the brain from waking and dreaming for visuals.
There is a high coroloation rate of SDAM and aphantasia. I think if you have one neurodivergency there is a chance for more.
i can visualise a certain thing for one second and then it immediately goes away and i can’t do it again for a while
I am relieved to know I’m not the only one who has this. I would like to know if there is help for this or is it something I just have to live with.
It's still being researched but so far researchers are in discovery phase of we do exist. Although I think it'd be very overwhelming if there was a way to "unlock" my memories. It may be too much. Interesting to think about.
With Adhd the long term memory and data facts are easier to recall also with short term memories are just randomly recorded into long term… I explain that I don’t get to control what gets recorded… sooo that may also be something not helping with the memory loss :/
Yes! The adhd short term memory problem really isn't helpful in combination of no autobiographical memory! 🥴
I write everything down. Since I don't have a memory, it I put it in words or make a story about it, I will remember the facts later. But anything that involves remembering 'images', like faces, I might get an 'ah-ha' moment like they are familiar to me. But then I wonder where I know them from or what their name is. I have done this with dad's nurse after I didn't see her for two years. Saw her by chance in a store. When she started talking about taking care of my father, then I remembered her name and what she used to do for my dad. Very embarassing and disappointing for me.
Excuse my forwardness here. I find you very attractive . I mention it in part because I think attraction is based on our neurotype
Who is the persob that has the severe form of this? I forget EVERYTHING!!!!! Like day to day and cannot remember my past!!!!
This sounds similar to me, but certain parts of it also don't. I thought that I had figured out the reason for my absolutely horrible memory, but maybe not lol.
I feel that. Remember, I'm just one person and anything dealing with the brain will have differences. If you're on FB I'd suggest joining the SDAM fb groups. I'm not super familiar with reddit but I think there's groups there too. Just to hear more experiences. But there are other memory disorders or Dissociative trauma disorders that include memory loss
Other people can replay happy memories in first person?! I'm insanely jealous. I have vague, unemotional "videos" that are reconstructions based on my knowledge of what happened. They're also third person. Idk if that counts. I don't have aphantasia, so my imagination fills in gaps.
Yep, lots of people can replay memories in first person.
Before I forget (lol-ish) I have always had to explain to people I have two piles of information on my "mental" desk. The important pile and the everything else pile. And it is this simple, I have no problems remembering the stuff placed on the important pile (for the most part) but as for the everything else pile, it may not get thrown away but it is removed from my memory banks. Every once in a while it will come back to me but for the most part no. Now here is the kicker, everyone calls me the man of useless knowledge. I pride myself in knowing all sorts of things about random things, always have and it has never weakened. However I still can not remember my wife and daughter's birthdays correctly.
I just assumed it was my aphantasia..
A lot of people with aphantasia also have SDAM
Wait, people remember what others were dressed in?
Sometimes!
I have the same, no idea that this was a thing, wondering how this is called in the Netherlands, also therapy wont get in my head, when i leave the door , its like i get erased, its so frustrating.
Yes about the therapy! SDAM is newly being researched so not sure how wide spread. If I "remember" (haha) the research team heading it up is in Canada.
@@i.am.mindblind I wrote it down, i am going to discuss this with my therapist, i said so often that stuff wont come in, weird that they didnt came up with it, i often feel like an idiot or plain dumb
Hi can i contact u via email
You can DM me on Instagram @i.am.mindblind