This part “recognize the potential for solidarity in the fact that we all live under a system that requires our illness to function” really resonated with me. Racism, ableism, hatred of unhoused and poor people - the way that our system persists is by pitting people who are treated as less than against each other. If we are busy arguing about who deserves more, there’s no energy left to work on dismantling systems that hurt all of us.
I believe the idea that there "isn't enough to go around" is perpetuated by the tendency of activists to normalize the most palatable members of a marginalized group, then pat themselves on the back and think they've solved the problem, throwing everyone else under the bus.
I have personal experience of the impacts of this, not in regards to autism, but in regards to an incurable, under-researched chronic disease I have. Said disease is quite common, but highly variable in functional impact, much like autism. 99% of advocacy fails to raise awareness of the 25% of patients for which it is life threatening. The consequences are absolutely devastating. People are dying every day in horrific suffering and nobody is even aware it's happening unless they're already a part of that terminally ill community.
In terms of advocacy, there really ISN'T enough of it to go around, and the most stigmatized members of a community are the ones who lose out.
If every autistic person advocated for the needs of "profoundly autistic" people as well as their own - what a different world it would be. But most people simply don't have the energy or motivation to advocate for needs they perceive as unrelated to their own.
I could be wrong but I assume you are talking about ME/CFS? I've wondered about the impacts of highly public 'recovery' stories, which unsurprisingly are usually told by people who have the seemingly unlimited resources it takes to actually get well. This takes the incentive away from resources that would help the masses (research, advocacy, systemic change) and instead places it on providing expensive care, treatments and therapies to make a profit. Even worse, it causes people to turn their back on people when they can't get well, believing they are somehow less deserving of support because they 'haven't tried hard enough'.
I am indeed talking about ME/CFS. What you describe is essentially a pseudoscience industry, and it's not specific to that disease. There are similar industries for pretty much any chronic condition you can think of, even ones that have large amounts of research and advocacy associated with them, like cancer. So I don't think there's a causal relatonship there. My understanding is that in the case of ME/CFS the lack of scientific progress is a direct result of historical prejudice and corruption. However, the recovery stories certainly don't help. We see the same phenomenon with cancer where people's recoveries are used to sell pseudoscientific treatment protocols. I would not be surprised if something similar exists for autism, though I haven't encountered it myself.
You're right, not specific to ME/CFS. I agree that the lack of scientific research is due to prejudice and corruption, and just the lack of visibility it had. Before I started looking into it because of my own health struggles, I had no idea that it even existed and how debilitating an illness it was. I think I was reflecting on the point made at the end of the article about getting what they can from us once we are no longer deemed 'useful'. The incentive then becomes to provide costly treatments, with the carrot being those rare cases where someone 'recovers' (or at least sees some sort of improvement), and we have no choice but to throw what resources we have left at them. Also, ableism is a huge factor. I think there is such a huge fear in the mild/moderate folks of becoming severe that they cannot even comprehend the possibility it could happen to them and therefore try to ignore that the severe people exist, which skews advocacy efforts.
I only got to read the free half of this article, but I definitely agree with this premise and analysis. I also see the echo-chambers of social media curation algorithms having a HUGE impact on this as well. If all of the content you see is made by users claiming to have ADHD or autism even say 1000 people with those traits, that's still a huge minority in the scheme of the 8 billion people in the world. We gravitate toward people like us. I have ADHD, 95% of my chosen content is made by other neurodivergent people. This makes sense to me because I understand and resonate with this content. And likewise so does everyone else who sees this "trend" of ADHD and autism.
There are a LOT of us. We've been camouflaging, flying under the radar and falling through the cracks for all of History, this is the first time we've ever had a time and place where our traits were taken seriously, generally accepted and more widely understood.
I make a comparison to LGBTQIA+ people; (I am also gender fluid and pansexual) we've always existed, but only in the last few decades has it been relatively safe and acceptable for us to be our authentic selves in public. So it looks like there's a TON more people that are LGBTQIA+ than there were 60-80 years ago. I don't think there are more. I think it's just safer and more accessible to embrace the non cisgender and heterosexual identities than it used to be.
Likewise it's safer and more accessible to recognize and identify our neurodivergent traits now than it ever use to be. My mom is 65, she's always been autistic. She's only known she is autistic for the last 8 ish years. To he other decades of her life were just spent believing she was flawed, broken, undesirable, weird, alien, lazy, burdensome, and otherwise challenged when attempting to be neurotypical. It led to a metric ton of complex trauma and a nervous breakdown in her 50s.
So yeah I still think ADHD and autism are under-diagnosed. But I'm biased.
I ranted about something similar on my substack recently - you touched on people who put down self-diagnosis and their lack of compassion. i've been really frustrated by this reaction to self-diagnosis online too. i think the presumption that you undertstand someone (potentially a stranger!) better than they do is wild
Also me screaming into the void. I had to go through a myriad of paperwork and assessments in order to be able to wear headphones at work. There very limited research and recommendations for late diagnosed adults from what I’m able to locate. It’s predominantly geared towards small boys.
I'm a late diagnosis of Asperger's, severe anxiety and clinical depression and trying to get support even in the offline community or friends and family has been hard to the point where I've given up. I mention some symptoms and most say "oh well I get anxious, do I have it as well?" It's almost like every questioning NT feels like they're missing out on some sort of "special badge..." pray help
Us that autism doesn't become the new veganism....
Prior to my own official diagnosis, I wanted to think critically and be sure that I wasn't being 'influenced' by the Internet to think a certain way, but to see if what I was thinking and feeling was matching with what I read and remembered about my life. Even revealing the information post-diagnosis I'm sure has some people I know echoing your title, and then I remember that I can tell people, and lead a horse to water, but cannot make it drink. One of my goals though is to help dispel stigmas and fears about autism.
I have a disability. And I live in a country where people who are less severely affected aren’t taking resources by those more severely affected, by the way our system works.
And still, among others affected, I feel like I‘m scamming, that I am not affected like *they* are. Talking to a friend who in my mind is more severely affected, she feels the same: that she has less to deal with than others, and does she really belong among us?
This whole debate sucks. It sucks that people divide between “profoundly” autistic and otherwise, and see it as a resource competition. It's not easy being any kind of autistic.
“Research indicates that individuals with Autism are 6 times more likely to attempt to commit suicide than the general population. Furthermore, they are 7 times more likely to die by suicide than the general population. Some of the most common factors attributing to suicidal thoughts among individuals with Autism are loneliness, communication difficulties, and a lack of support.”
The research also suggests autistic people without an intellectual disability (aka those who are NOT “profoundly” autistic, are likely able to mask, or have level 1 or 2 support needs, or high IQs, etc) are the most likely to commit suicide… in other words, the ones who “don't look autistic” are statistically more likely to be dying inside.
So is it possible, that maybe, just maybe, that person who seems ok and therefore couldn't possibly be autistic, actually needs more support and has more challenges than are visible on social media?
It's also ironic because part of the autistic experience is a sense of otherness and othering by social groups, and by saying someone isn't autistic, you're othering them and treating them to the authentic ASD experience.
It just baffles me that in 2024, people still look at social media and think somehow, what I see in these clips/posts must be that person's whole experience, and I am somehow qualified to make a judgement call on it. Sigh. I don't get it.
ELIA, please.
Explain like I'm Autistic, because my AuDHD ass doesn't understand this behaviour.
Scarcity mentality. Limited mindsets. Nervous system dysregulation. They don’t even realize that the more of us who go hey there, this is what autism looks like, the more, hopefully, people have to listen.
Holy Shmoley. This blew my mind and has cleared out a lot of clutter. Thank you. You've said what I've felt for a while but didn't have words for. I'm a parent of an autistic kid who masks so well at school that he just seems quirky and odd, but comes home and disappears into his crypt of a bedroom for 6 or 7 hours before he has the wherewithal to be around people again.
But actually. Now I’m thinking of this thing Cal Newport wrote in one of his books. Deep Work or A World Without Email, something like we shouldn’t be taking breaks from chaos (Ie phone notifications by shutting them off an hour a day or on a Sunday) we should be taking breaks from focus.
And I’d just like to apply that to us. I know it’s not possible for many to just stop peopling because of jobs and shit but doesn’t it feel like it’s supposed to be that don’t take breaks from peopling but that we take breaks from solitude/downtime? Ie we come out to people once or twice a week (or month, if you’re me). I’m sure I’m not making any sense. Sorry. I should write an essay on it. I’m thought dumping. Forgive me.
I would challenge the definition of bottom-up processing that’s in this article. For me I would define it as: building internal models of systems (people, the world) based on their identifiable core foundational logics or parts and rolling upwards from there - as opposed to accepting the appearance of a system as a model, and being able to discover their discrete parts later.
I understand this might not sound different to the article but bear with me. Because bottoms-up processing is not defined by its speed, or by a specific topic of interest; but on its approach to processing information.
So for me, if I’ve got the core fundamental logics built in, I can actually be quite fast in simulating and predicting outcomes in my head. That’s where my special interests kick in - I understand their core logics especially well due to extensive research. Hyperactively so (yes, adhd comorbid) For things outside those areas, I’m then much slower in accepting and working through them because until I’ve worked out the systems that are behind *why* they work that way, it doesn’t make sense to me, it seems chaotic and arbitrary.
And that’s where my learning challenges or employment challenges come in. Sometimes if I’ve got the wrong “core logics” programmed into my brain, I have huge difficulty adjusting to unpredictable behaviour until I have updated my internal model. I also have difficulties if a task asks me to operate without knowing the logic as to why I should operate that way. And of course then there’s the difficulty that it’s not energetically efficient or even possible to hold models of entire systems in your head. The systems of this universe are infinitely complex and we will never have enough data to predict everything or remember everything because we aren’t omniscient.
And there are those (like myself) who identify as having psychology or social interactions as a special interest who can arguably process those quite quickly; *but* operating these complex models is energetically incredibly draining. Leading to information overload and sensory retreat for rest and recovery.
So the point is that I think bottoms-up processing doesn’t mean you can only process the social world slowly; but yes, it’s on scales that are often vastly more complex than other folk would ever bother to do or see as reasonable. It can be fast, but the energy, rest + recovery time required for that processing power is monumental. And that’s when we have to retreat from the world and reduce informational input and look “introverted” because our “batteries” are recharged via alone time, as some put it.
Anyway, whether or not those who experience bottoms-up processes get marked through a lens of autism or disability, I agree with the article that it is an important one to examine. The true political minefield. And I agree with the intellectual query. I just think that understanding the core processes (whether bottoms-up thinking, cerebellum functioning, atypical neurogenesis, monotropic focus, and so much more) *as well as* cultural and political contexts all helps better in understanding the politics of pathologisation vs solidarity vs resource allocation vs epistemic justice.
This part “recognize the potential for solidarity in the fact that we all live under a system that requires our illness to function” really resonated with me. Racism, ableism, hatred of unhoused and poor people - the way that our system persists is by pitting people who are treated as less than against each other. If we are busy arguing about who deserves more, there’s no energy left to work on dismantling systems that hurt all of us.
I believe the idea that there "isn't enough to go around" is perpetuated by the tendency of activists to normalize the most palatable members of a marginalized group, then pat themselves on the back and think they've solved the problem, throwing everyone else under the bus.
I have personal experience of the impacts of this, not in regards to autism, but in regards to an incurable, under-researched chronic disease I have. Said disease is quite common, but highly variable in functional impact, much like autism. 99% of advocacy fails to raise awareness of the 25% of patients for which it is life threatening. The consequences are absolutely devastating. People are dying every day in horrific suffering and nobody is even aware it's happening unless they're already a part of that terminally ill community.
In terms of advocacy, there really ISN'T enough of it to go around, and the most stigmatized members of a community are the ones who lose out.
If every autistic person advocated for the needs of "profoundly autistic" people as well as their own - what a different world it would be. But most people simply don't have the energy or motivation to advocate for needs they perceive as unrelated to their own.
I could be wrong but I assume you are talking about ME/CFS? I've wondered about the impacts of highly public 'recovery' stories, which unsurprisingly are usually told by people who have the seemingly unlimited resources it takes to actually get well. This takes the incentive away from resources that would help the masses (research, advocacy, systemic change) and instead places it on providing expensive care, treatments and therapies to make a profit. Even worse, it causes people to turn their back on people when they can't get well, believing they are somehow less deserving of support because they 'haven't tried hard enough'.
I am indeed talking about ME/CFS. What you describe is essentially a pseudoscience industry, and it's not specific to that disease. There are similar industries for pretty much any chronic condition you can think of, even ones that have large amounts of research and advocacy associated with them, like cancer. So I don't think there's a causal relatonship there. My understanding is that in the case of ME/CFS the lack of scientific progress is a direct result of historical prejudice and corruption. However, the recovery stories certainly don't help. We see the same phenomenon with cancer where people's recoveries are used to sell pseudoscientific treatment protocols. I would not be surprised if something similar exists for autism, though I haven't encountered it myself.
You're right, not specific to ME/CFS. I agree that the lack of scientific research is due to prejudice and corruption, and just the lack of visibility it had. Before I started looking into it because of my own health struggles, I had no idea that it even existed and how debilitating an illness it was. I think I was reflecting on the point made at the end of the article about getting what they can from us once we are no longer deemed 'useful'. The incentive then becomes to provide costly treatments, with the carrot being those rare cases where someone 'recovers' (or at least sees some sort of improvement), and we have no choice but to throw what resources we have left at them. Also, ableism is a huge factor. I think there is such a huge fear in the mild/moderate folks of becoming severe that they cannot even comprehend the possibility it could happen to them and therefore try to ignore that the severe people exist, which skews advocacy efforts.
I only got to read the free half of this article, but I definitely agree with this premise and analysis. I also see the echo-chambers of social media curation algorithms having a HUGE impact on this as well. If all of the content you see is made by users claiming to have ADHD or autism even say 1000 people with those traits, that's still a huge minority in the scheme of the 8 billion people in the world. We gravitate toward people like us. I have ADHD, 95% of my chosen content is made by other neurodivergent people. This makes sense to me because I understand and resonate with this content. And likewise so does everyone else who sees this "trend" of ADHD and autism.
There are a LOT of us. We've been camouflaging, flying under the radar and falling through the cracks for all of History, this is the first time we've ever had a time and place where our traits were taken seriously, generally accepted and more widely understood.
I make a comparison to LGBTQIA+ people; (I am also gender fluid and pansexual) we've always existed, but only in the last few decades has it been relatively safe and acceptable for us to be our authentic selves in public. So it looks like there's a TON more people that are LGBTQIA+ than there were 60-80 years ago. I don't think there are more. I think it's just safer and more accessible to embrace the non cisgender and heterosexual identities than it used to be.
Likewise it's safer and more accessible to recognize and identify our neurodivergent traits now than it ever use to be. My mom is 65, she's always been autistic. She's only known she is autistic for the last 8 ish years. To he other decades of her life were just spent believing she was flawed, broken, undesirable, weird, alien, lazy, burdensome, and otherwise challenged when attempting to be neurotypical. It led to a metric ton of complex trauma and a nervous breakdown in her 50s.
So yeah I still think ADHD and autism are under-diagnosed. But I'm biased.
this is a free post! you should be able to read it all?
yeah that was my mistake, it looked like there was more content behind a paywall. Anyway brilliant works.
I ranted about something similar on my substack recently - you touched on people who put down self-diagnosis and their lack of compassion. i've been really frustrated by this reaction to self-diagnosis online too. i think the presumption that you undertstand someone (potentially a stranger!) better than they do is wild
Lmao what resources
Also me screaming into the void. I had to go through a myriad of paperwork and assessments in order to be able to wear headphones at work. There very limited research and recommendations for late diagnosed adults from what I’m able to locate. It’s predominantly geared towards small boys.
I was about to type this - see it’s covered! Hell, half the people where I live can’t even get a family doctor.
I'm a late diagnosis of Asperger's, severe anxiety and clinical depression and trying to get support even in the offline community or friends and family has been hard to the point where I've given up. I mention some symptoms and most say "oh well I get anxious, do I have it as well?" It's almost like every questioning NT feels like they're missing out on some sort of "special badge..." pray help
Us that autism doesn't become the new veganism....
Asperger’s is not a diagnosis under the DSM-V and was removed in 2013. It was replaced by moving the criteria under the wider umbrella of ASD.
Hans Asperger, who was credited with discovering Asperger’s, has ties to the Nazi party.
This is not questioning your diagnosis, but for your knowledge.
I echo your thoughts, too. I'm sorry that folk aren't supportive of you.
Prior to my own official diagnosis, I wanted to think critically and be sure that I wasn't being 'influenced' by the Internet to think a certain way, but to see if what I was thinking and feeling was matching with what I read and remembered about my life. Even revealing the information post-diagnosis I'm sure has some people I know echoing your title, and then I remember that I can tell people, and lead a horse to water, but cannot make it drink. One of my goals though is to help dispel stigmas and fears about autism.
I have a disability. And I live in a country where people who are less severely affected aren’t taking resources by those more severely affected, by the way our system works.
And still, among others affected, I feel like I‘m scamming, that I am not affected like *they* are. Talking to a friend who in my mind is more severely affected, she feels the same: that she has less to deal with than others, and does she really belong among us?
So. There is also this.
This whole debate sucks. It sucks that people divide between “profoundly” autistic and otherwise, and see it as a resource competition. It's not easy being any kind of autistic.
“Research indicates that individuals with Autism are 6 times more likely to attempt to commit suicide than the general population. Furthermore, they are 7 times more likely to die by suicide than the general population. Some of the most common factors attributing to suicidal thoughts among individuals with Autism are loneliness, communication difficulties, and a lack of support.”
The research also suggests autistic people without an intellectual disability (aka those who are NOT “profoundly” autistic, are likely able to mask, or have level 1 or 2 support needs, or high IQs, etc) are the most likely to commit suicide… in other words, the ones who “don't look autistic” are statistically more likely to be dying inside.
So is it possible, that maybe, just maybe, that person who seems ok and therefore couldn't possibly be autistic, actually needs more support and has more challenges than are visible on social media?
It's also ironic because part of the autistic experience is a sense of otherness and othering by social groups, and by saying someone isn't autistic, you're othering them and treating them to the authentic ASD experience.
It just baffles me that in 2024, people still look at social media and think somehow, what I see in these clips/posts must be that person's whole experience, and I am somehow qualified to make a judgement call on it. Sigh. I don't get it.
ELIA, please.
Explain like I'm Autistic, because my AuDHD ass doesn't understand this behaviour.
Scarcity mentality. Limited mindsets. Nervous system dysregulation. They don’t even realize that the more of us who go hey there, this is what autism looks like, the more, hopefully, people have to listen.
this this this exactly.
Holy Shmoley. This blew my mind and has cleared out a lot of clutter. Thank you. You've said what I've felt for a while but didn't have words for. I'm a parent of an autistic kid who masks so well at school that he just seems quirky and odd, but comes home and disappears into his crypt of a bedroom for 6 or 7 hours before he has the wherewithal to be around people again.
Me as an adult too 😭
But actually. Now I’m thinking of this thing Cal Newport wrote in one of his books. Deep Work or A World Without Email, something like we shouldn’t be taking breaks from chaos (Ie phone notifications by shutting them off an hour a day or on a Sunday) we should be taking breaks from focus.
And I’d just like to apply that to us. I know it’s not possible for many to just stop peopling because of jobs and shit but doesn’t it feel like it’s supposed to be that don’t take breaks from peopling but that we take breaks from solitude/downtime? Ie we come out to people once or twice a week (or month, if you’re me). I’m sure I’m not making any sense. Sorry. I should write an essay on it. I’m thought dumping. Forgive me.
Same. It’s why I stopped peopling.
I also adored Health Communism - it heavily references “SPK: Turn Illness into a Weapon” which is available free on Internet Archive. 🪷⚕️🤺
I would challenge the definition of bottom-up processing that’s in this article. For me I would define it as: building internal models of systems (people, the world) based on their identifiable core foundational logics or parts and rolling upwards from there - as opposed to accepting the appearance of a system as a model, and being able to discover their discrete parts later.
I understand this might not sound different to the article but bear with me. Because bottoms-up processing is not defined by its speed, or by a specific topic of interest; but on its approach to processing information.
So for me, if I’ve got the core fundamental logics built in, I can actually be quite fast in simulating and predicting outcomes in my head. That’s where my special interests kick in - I understand their core logics especially well due to extensive research. Hyperactively so (yes, adhd comorbid) For things outside those areas, I’m then much slower in accepting and working through them because until I’ve worked out the systems that are behind *why* they work that way, it doesn’t make sense to me, it seems chaotic and arbitrary.
And that’s where my learning challenges or employment challenges come in. Sometimes if I’ve got the wrong “core logics” programmed into my brain, I have huge difficulty adjusting to unpredictable behaviour until I have updated my internal model. I also have difficulties if a task asks me to operate without knowing the logic as to why I should operate that way. And of course then there’s the difficulty that it’s not energetically efficient or even possible to hold models of entire systems in your head. The systems of this universe are infinitely complex and we will never have enough data to predict everything or remember everything because we aren’t omniscient.
And there are those (like myself) who identify as having psychology or social interactions as a special interest who can arguably process those quite quickly; *but* operating these complex models is energetically incredibly draining. Leading to information overload and sensory retreat for rest and recovery.
So the point is that I think bottoms-up processing doesn’t mean you can only process the social world slowly; but yes, it’s on scales that are often vastly more complex than other folk would ever bother to do or see as reasonable. It can be fast, but the energy, rest + recovery time required for that processing power is monumental. And that’s when we have to retreat from the world and reduce informational input and look “introverted” because our “batteries” are recharged via alone time, as some put it.
Anyway, whether or not those who experience bottoms-up processes get marked through a lens of autism or disability, I agree with the article that it is an important one to examine. The true political minefield. And I agree with the intellectual query. I just think that understanding the core processes (whether bottoms-up thinking, cerebellum functioning, atypical neurogenesis, monotropic focus, and so much more) *as well as* cultural and political contexts all helps better in understanding the politics of pathologisation vs solidarity vs resource allocation vs epistemic justice.
I am an Autistic therapist. If you find additional support would be helpful, please contact me for a free initial consultation https://charhouben.phd
Not me, trying to highlight your post like you're still on Medium lol.... I love this.
Ah, I love Medium! I find myself doing that too.
Bravo. I love your perspective and reasoning.
Well if it really is everyone, that means the person posting is autistic too. So maybe it’s the platform itself?