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'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.
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'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....
I echo your thoughts, too. I'm sorry that folk aren't supportive of you.
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.
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.