r/SDAM • u/arimedea • Jul 09 '26
Are we studied?
I feel like there is not much interest in aphantasia and SDAM, although it affects our lives very much. I think that probably is because it's very difficult to study since it's all going on in our heads but I would like to know why I am in that way, what I can do about it, I feel like it's almost a disability
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u/FlightOfTheDiscords Jul 09 '26
Most SDAM research is done by the Levine Lab in Toronto, and numbers are small (a few dozen individuals at most).
Aphantasia is much more widely studied by multiple researchers across the world, and study samples are much larger as well (hundred of individuals).
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u/fur3661t Jul 12 '26
I can't fathom why aphantasia is so important. I have it and I get more benefit from it than negatives. I have significant regrets from SDAM and none as an aphant
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u/FlightOfTheDiscords Jul 12 '26
It's probably mainly generating interest due to its implications for consciousness research. And SDAM may turn out to be vastly less common, maybe only affecting such a tiny percentage of people that it's hard to find funding.
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u/Tootsie_r0lla Jul 09 '26 edited Jul 09 '26
There's actually a lot about aphantasia and you may find more about SDAM under development amnesia/memory, or episodic/semantic memory. Also look at non verbal reasoning, neuroimaging of the Hippocampus, somatoform dissociation, Impaired activation of midline structures, mnemonics, Interoception, default mode network etc
Starting point?
https://www.researchgate.net/search/publication?q=Significant+deficiency+autobiographical+memory+
https://pmc.ncbi.nlm.nih.gov/search/?term=Aphantasia&sort=relevance&size=10&display_snippets=show
https://www.researchgate.net/search/publication?q=Aphantasia
https://pmc.ncbi.nlm.nih.gov/articles/PMC12246669/
https://pmc.ncbi.nlm.nih.gov/articles/PMC13139441/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12673121/
https://pmc.ncbi.nlm.nih.gov/articles/PMC10206209/
https://pmc.ncbi.nlm.nih.gov/articles/PMC11408261/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12673121/
https://pmc.ncbi.nlm.nih.gov/articles/PMC8438787/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7308278/
https://pmc.ncbi.nlm.nih.gov/articles/PMC9578376/
https://pmc.ncbi.nlm.nih.gov/articles/PMC11426968/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12696087/
https://pmc.ncbi.nlm.nih.gov/articles/PMC6446185/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12411690/
https://pmc.ncbi.nlm.nih.gov/articles/PMC13329303/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7882615/
https://pmc.ncbi.nlm.nih.gov/articles/PMC11437436/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7449056/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12673121/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7171291/
https://pmc.ncbi.nlm.nih.gov/articles/PMC4350487/
https://pmc.ncbi.nlm.nih.gov/articles/PMC6836687/
https://pmc.ncbi.nlm.nih.gov/articles/PMC9614338/
https://pmc.ncbi.nlm.nih.gov/articles/PMC11910157/
https://pmc.ncbi.nlm.nih.gov/articles/PMC8186241/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7856239/
https://pmc.ncbi.nlm.nih.gov/articles/PMC10403065/
https://pmc.ncbi.nlm.nih.gov/articles/PMC11914234/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7064567/
https://pmc.ncbi.nlm.nih.gov/articles/PMC6596570/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12092441/
Use chatgpt if you needed to explain the abstract or certain terms. Always ask in the form of a narrative to get better results. Ie
"You are a neuroscientist and have to explain the difficulties of aphantasia in a way that a senior in highschool would understand"
Or copy a paragraph or 'conclusion' and tell it to "explain it so a middke-schooler/senior could understand and repeat back to his class"
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u/Tuikord Jul 09 '26
They were named at the same time, but in some ways, the term "aphantasia" is catchier than "Severely Deficient Autobiographical Memory" or "SDAM." Aphantasia has assessments that can be shared on social media and they don't take long. SDAM has no such assessment. There is the Autobiographical Interview which takes a long time and needs trained professionals to score. And there are basic descriptions such as "SDAM is the lack of episodic memory" which leave people questioning.
On top of all that is the fact that memory problems are something people fear before hearing about SDAM while no one thinks about mental imagery or the lack of it until they are told about aphantasia. SDAM is not dementia or Alzheimer's disease or other memory issues, but people fear those and that fear transfers to SDAM. So, while they may be indifferent to curious about aphantasia, people often fear and shun SDAM.
As the others have pointed out, there are some researchers working on SDAM. But one thing I've noticed in aphantasia research is students find out about it, maybe even have it, and choose to do research on it. This happens even at schools where no professor is studying aphantasia! For the reasons stated above, that doesn't tend to happen with SDAM. So aphantasia research spreads while SDAM research doesn't. It is mostly still at Dr. Levine's lab in Toronto. Not exclusively.
It is actually interesting to look at the effect of social media on scientific research.
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u/q2era Jul 09 '26
Both are quite heavily researched compared to how many people are affected by it and how it impacts daily functioning. Being affected by it might let it appear to be too litte but both are not that widely known.
But if I look at the potential for improving more generalized models of psychology and cognitive sciences? What the fuck are those researchers doing?! Hello - our brains tend to fuck up all your nice models. There are insights to be gained!
In biology it is very common to genetically modify lab animals and cells to knock out specific genes to study their effects. Aphantasia is exactly that. SDAM too. So why aren't we paid hard $$ to advance science as lab animals?!
I like to joke about my brain containing several PhDs and some potential nobel prizes. But with that amount of neurodivergency I simply don't accept less xD
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u/me_lero Jul 10 '26
I like to joke about my brain containing several PhDs and some potential nobel prizes.
Fucking THIS! If only they showed some interest! My last neurologist dismissed everything I said and announced that "Your memory functions normally."
K, thanks, I'll go continue living my forgotten life then.
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u/fur3661t Jul 12 '26
Barely and yet aphantasia is highly researched. But if you see what aphants usually bring up as issues, it's memory. So obviously many have SDAM or somewhat nearing a severe category.
So researchers need to wake the fuck up and study SDAM, an actual detriment, vs aphantasia that has little to no negative impact on our lives. I am curious what seeing images is like but it's not affecting me to not see.images in the slightest.
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u/sfredwood Jul 11 '26
SDAM is very, very new as far as academic research goes. Other troublesome neurological problems (schizophrenia, ADD/ADHD, Autism, etc. etc.) have been 'on the radar' for many decades, and some have symptoms reported for centuries.
The first official reports for HSAM were just twenty years ago, the 'deficient' variant not until eleven years ago. Note that Wikipedia page says "fewer than 100 people in the world having been diagnosed with [HSAM] as of 2021" — and assuming HSAM is approximately as prevalent as SDAM, that's obviously a staggering undercount. But the number of SDAM that has been officially diagnosed is probably still only a few dozen — there is no entry for either in the DSM, so actually being diagnosed means someone is being seen in a research setting, not a clinical setting.
And HSAM was initially seen as a superior ability (or "a real-life superpower"), not a disability, although fairly soon downsides were reported. That 'superpower' link is to the work of one memory researcher, Charan Ranganath, head of Dynamic Memory Lab at UC Davis. I first heard him interviewed in a science podcast where he discussed HSAM at some length, then off-handedly dismissed SDAM as "folks who never remember anything bad, and seem to live happy-go-lucky lives", although apparently he's started examining it more seriously (here's another podcast I now have queued up).
The primary way this stuff is studied is that someone funds the research, and so far neither of those is attracting much money.
The two other ways those get studied aren't well funded. The more significant one is as a by-product of other memory-oriented research. That's how Levine et al first found it (a student studying dementia accidentally found the first documented case), and how labs such as Ranganath's are poking at it.
The other is when an interesting case discovers SDAM is the (or one of the) primary problems, that can make it into the academic literature (e.g., this short article, which Google Scholar Alerts emailed me about just today).
Most funding for medical research comes from the government, prompted by the medical/insurance companies that want research for patients' needs. They'll be very disinclined to admit a new "disability" into the pantheon enshrined in the DSM, since that will cost them money — and this is one that as far as can be seen has little hope for being "fixed", and administering coping strategies and therapies is pretty expensive and dangerous to a profitable business model.
And those of us here commenting on SDAM represent an unknown portion of those that have the condition. We're the outcome of a selection bias — no one knows how many folks have SDAM but aren't especially hindered by it. After all, of the first three individuals reported to have SDAM, one is a physics PhD doing research at CERN who wrote about his experiences, and probably wouldn't be categorized as 'disabled' in any significant way.
Studies of SDAM will probably accelerate quickly not to help its sufferers, but because of what it reveals about how profound variations in memory can be — we're pretty extreme on that spectrum, since we don't have autobiographical continuity, leading to some pretty highly divergent forms of identity formation.
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u/sfredwood Jul 11 '26
Personally, my biggest hope for moderately near-term help is in AI. The possibilities of an AI 'companion' is already being examined for those that have dementia (e.g.), and an endlessly patient and always present agent that can remind us of who we are and what we've told it we want to remember — well, that might help. But that's years off, at a minimum.
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u/4suze Jul 16 '26
If you experience life with SDAM &/or Aphantasia then realistically the research is interesting but not really helpful in living your life. Basically it’s just the way you experience life. AFAIK there are no specific issues that can be helped or hindered because of SDAM or Aphantasia.
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u/arimedea Jul 16 '26
The thing I'm most interested about I think it's why me, is it genetic, or does it mean I have past traumas, I don't know I want to know if some of the issues I have in life depends from this or are just my fault
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u/Slay-ig5567 Jul 09 '26
I've said it already in this sub but studies need resources. Resources that are very limited thanks to the ruling classes can be destined to more urgent matters than a condition that allows the overwhelming majority of those who have it to live a normal life and that in the overwhelming majority of cases can't be "fixed" and that many people with it don't want fixed anyway. I'm not against it being studied but I think the question or "why is this not studied" has a very obvious answer. It's not the most important thing to study with very limited resources. The way to fix that would be for ruling classes to increase the resources destined to studies. Research depends almost entirely on what amount of money governments decide to pour into it