From the perspective of a late-diagnosed (WHAT), unemployed (WHAT) and pseudo-anarchist AuDHD comedian (WHAT). AND THAT'S THE BOTTOM LINE, BECAUSE STONE COLD SAID SO.
63f, just diagnosed. My career "professional masker" but held on to the last job for 20 years. Final catatonic burnout 2010, diagnosis at that time "nervous exhaustion, severe depression & anxiety" (also fibromyalgia, underactive thyroid, food and chemical intolerances, GORD, cPTSD, OSAS, .... etc., etc). Not yet recovered. I don't think I ever will. Just waiting for the ADHD confirmation. I do wonder how different my life would have been had I been diagnosed in childhood. One teacher did mention I appeared withdrawn but that was put down to my resting bitch face.
Wow! I’m sorry it took so long for you to understand your own brain! People like you are the reason I write— the idea of sweet autistic children living their entire lives without the words to describe their inner experience keeps me up at night. So much damage could be avoided if we just understood each other’s brains!
It was tough. We moved a lot for dad's work which meant changing schools. I went to 13 schools in as many years, so it was constant upheaval. Before the days of a national curriculum too (UK). I asked to be sent to a boarding school. Most of my time was spent reading. Reading was my escape. Still is. I knew I was different. I had no idea why children ran around screaming. I never got jokes or games. Sad little thing.
Whoa. As a late-diagnosed, late in life AuDHD myself with an AuDHD daughter going through similar struggles, this was way too true and real. I managed to survive the disability gauntlet and get more than $1400 but it still isn't enough to live off of on my own. I've been more than fortunate in being able to cobble together well-paying contract gigs and am using the proceeds to supplement and help my daughter survive but the clock is ticking. At my age I don't have the juice to chase gigs like I once did. I'm trying to get a coaching career going but am struggling with chronic illness and burnout. All this to say, the struggle is so real, and I wish I knew what we could do to address it, short of mutual aid and straight rebellion. I'm hoping late-stage capitalism will manage to kill itself off and give us a chance to rebuild. Keep fighting the good fight, friend.
The struggle is real, especially when children are involved. It breaks my heart that so many stories like yours could be avoided if we just prioritized taking care of people’s basic needs. If autistic people designed society, I feel like that’s the first thing we would do.
I can only really focus on one thing at a time, so I usually do things in spurts. I procrastinate and use pure fear as my motivation, but that’s probably bad advice lol
This: "They’ve been so beaten down by relationship trauma, chronic stress, disease, poverty, loneliness and grief— that they’re stuck in a semi-permanent fight-or-flight mode." This is me to a T.
This was very cathartic to read as a burned-out AuDHD'er on disability benefits with workplace trauma. Thank you so much for writing this. Definitely sharing! I was interviewed by a neurotypical dude about my experiences as an autistic person in the workplace, he was trying to learn about the problems we have working so that his org can see if they can fix them (good luck fighting the Autism Industrial Complex buddy). I already emailed it to him. I really hope he reads it. Speaking of the Autism Industrial Complex, in case you hadn't heard about that before, it's a thing I learned about a few years ago and the author of the study on it whose abstract I read in '21 published a book titled The Autism Industrial Complex on it in '22 that I've started reading! Very excited to learn more about the nuts and bolts of exactly how and why capitalism chews us up and spits us out as it does. Gonna read the Empire of Normality after that, on the recommendation of another autistic friend upon seeing I was reading AIC. I started following you recently and I love your bitter sweary down-to-earth writing. I want to shove it in all the infantilists faces. Fuck them. Thank you again and keep writing 💜
$1400/month and don’t you dare have too much other money or you’ll be disqualified. You must remain this poor. Where I live I think the cap is $2000. If you have more than $2000 total, in banks and even cash in your pocket, you obviously don’t need financial support hence you must not really be disabled. Where I live $3400/month is not enough to live. The median rent for a studio apt is almost $2000. If one could find work that keeps them under the $2K they would be one unexpected expense away from losing everything. Car tires are bald? Oil light is on? Can’t go to work because your kid is sick or you missed the last bus or you had a meltdown? Oops, what do you want to give up this month? Or do you want to do a payday loan and start the credit money pit? So they are saying you should either be able to live on $2001 because you are clearly not disabled if you can earn that much or you are self-sufficient if have that much from other sources, or you can live on between $1400-$3400 in a place where $2000 of it goes to rent if you are lucky enough to find that, and depending your disability you may have some nonnegotiable requirements such as ground level, or pets — I know you can override a no pets with an emotional support animal where I live, but I don’t what is required. (It is not a phony online certificate from some random scam site!) It may actually be a doctor’s note.— One may need wheelchair accessibility, public transportation nearby that runs 7-days a week, laundry, whatever. And if they have any children? A studio is not an option.
Also the process to apply for disability is so overwhelming. Even if one gets an attorney or advocate to do the legwork (please do get one if you apply for disability. In CA at least there is no cost to you unless your application is successful, and then their fee comes out of your back pay. — at least that is a contract you can easily find as that is some sort of legal limit thing. Please don’t get ripped off)
Getting county resources often requires going to multiple buildings and multiple forms and phone calls and if one doesn’t drive that means buses, taxis, or the kindness of friends, and there’s limited business hours and appointments and proving over and over that you qualify. It becomes a matter of “If I could do this I wouldn’t need your services” and a large part of the hoops we must jump through are to prevent fraud.
The thing is there is less fraud than the public imagines. Fear mongering by those who politically oppose subsidizing these programs leads to policies that make it harder for genuinely qualified people to access them. They are made to feel like scammers with all of the evidence they must provide. And if one doesn’t have an address? Whew. Being homeless, “unhoused” to some agencies, makes it even harder to prove you are everything you claim.
It can take weeks to accomplish tasks that could be handled in a day if those all of those county programs had the space to provide a resource center together. A satellite office where people could come to apply for everything at once, provide proof once, find out what they qualify for at the start, decide what support they want to avail themselves of (not everybody uses every subsidy they are eligible for. If they are offered $26/month in EBT they might decide that is better left in the kitty or if they have a resource from another organization like the VA) *and* all of this could be accomplished with disability accommodations for those who need assistance. Besides streamlining the process to eliminate so many other barriers for disabled people it would be feasible for proper training on dealing with a wider range of disabilities.
The staff at this resource center would be better able to accommodate the range of communication needs of applicants. They could be provided with tools to work with folks who exhibit autism traits that seem rude. They would understand that some statements are just observations without any judgment attached. ;).
Seriously, everybody would benefit from an expanded understanding of the neurodiverse public. They should be able to recognize some hints and not assume everyone is being difficult on purpose, that they may be just looking at the encounter differently. Their questions are not inane. Their disengagement is not personal. Their special requests are not because they think they are special — they are asking for disability accommodations, as is their right. They are self-advocating because that is the only way they are going to survive in the sensory hell that is that place. That is especially true when it is somewhere they need to be, like their job. Employers need to expand their understanding of ADA to include invisible disabilities of all kinds. A ramp isn’t the only accommodation they need to be prepared to provide as an employer.
And yes!! This notion of more more more on a planet with finite resources would be laughable if it weren’t actually having a terrible impact. Capitalism would be a cartoon villain with its shortsighted goal infinite gains as the kids watching all know the villain will fail because he’s missed the flaw in his own plan and are just waiting in suspense for him to fall into his own hole he’s been digging for himself. But he is taking everybody with him. Capitalism has been digging for a long time without shoring up the sides. It’s all coming down. This is going to be rough. And yes, the disabled population has been living on the brink for a long time with the highly flawed programs (significantly impaired by opposers and their disinformation about who is getting the support and how they are using it) and is going to lead the way down. We’ll let everybody know how deep it is.
[posting without re-re-re-reading so I don’t write more side thoughts. Sorry for any remaining typos and unclear passages. Go easy on the AuDHD thumb vomit]
As an unrelated side note. Why do commissaries accept EBT? Is it because military personnel do not earn a living wage and therefore qualify for EBT? Because that would mean military budgets are being padded by social programs. Or is it because relatives have privileges or retirees or something? I have no experience with military life. My father was out by the time I was a rational being. Please tell me it isn’t that active military personnel need food subsidies.
Damn, this is like a whole article in and of itself 😂 All super important points. I’m glad you commented because I barely got into the nuts and bolts of navigating the disability system. I’ll probably start that process next year. It’ll make for some good content at least.
I type significantly faster on my phone with my thumbs now than I do with my six finger method on a full sized keyboard. 90% of my access is on my phone. The computer is disappointing with its static keyboard layout and widely spread keys ;)
Did you know there is an 8000 character limit on FB comments? Terribly annoying. lol *and* no indicator when you have exceeded that limited. You are expected to just figure out just how much it too much. 🙄🤣
I don't think I'm part of the target audience for this piece but I'm really glad I stopped by. Thank you for saying our economic system echoes narcissitic means of control. I've been thinking this for so long and felt gaslit that no ones else seems to see it. Thank you. Wonderful article.
Sadly, none of everyday people can even accept a great idea Just because it might seem too communist.
Accepting one good policy that is socially beneficial does not make you a communist or a socialist Especially because We all live in a capitalist democratic society It's
Utterly ridiculous But logic does not compute these days
I feel a lot of this, but I was diagnosed with ADHD inattentive type in my 40s. My son is autistic (AuDHD) and I've often wondered if I am too, but it's so hard to get that diagnosis in upper-middle age. I also have Bipolar Disorder II so it could be it's those two sets of symptoms interacting that gives me more autistic traits. I guess exactly how my brain is wired differently doesn't matter that much. Just the ADHD diagnosis was enough to begin my journey towards self acceptance and stop treating my struggling as a personal moral failing. I enjoy reading these articles and knowing I am not alone.
63f, just diagnosed. My career "professional masker" but held on to the last job for 20 years. Final catatonic burnout 2010, diagnosis at that time "nervous exhaustion, severe depression & anxiety" (also fibromyalgia, underactive thyroid, food and chemical intolerances, GORD, cPTSD, OSAS, .... etc., etc). Not yet recovered. I don't think I ever will. Just waiting for the ADHD confirmation. I do wonder how different my life would have been had I been diagnosed in childhood. One teacher did mention I appeared withdrawn but that was put down to my resting bitch face.
Wow! I’m sorry it took so long for you to understand your own brain! People like you are the reason I write— the idea of sweet autistic children living their entire lives without the words to describe their inner experience keeps me up at night. So much damage could be avoided if we just understood each other’s brains!
It was tough. We moved a lot for dad's work which meant changing schools. I went to 13 schools in as many years, so it was constant upheaval. Before the days of a national curriculum too (UK). I asked to be sent to a boarding school. Most of my time was spent reading. Reading was my escape. Still is. I knew I was different. I had no idea why children ran around screaming. I never got jokes or games. Sad little thing.
This is hands down the most relatable thing I've read on Substack.
😎 thanks for reading!
Yes. 100% !!!
Whoa. As a late-diagnosed, late in life AuDHD myself with an AuDHD daughter going through similar struggles, this was way too true and real. I managed to survive the disability gauntlet and get more than $1400 but it still isn't enough to live off of on my own. I've been more than fortunate in being able to cobble together well-paying contract gigs and am using the proceeds to supplement and help my daughter survive but the clock is ticking. At my age I don't have the juice to chase gigs like I once did. I'm trying to get a coaching career going but am struggling with chronic illness and burnout. All this to say, the struggle is so real, and I wish I knew what we could do to address it, short of mutual aid and straight rebellion. I'm hoping late-stage capitalism will manage to kill itself off and give us a chance to rebuild. Keep fighting the good fight, friend.
The struggle is real, especially when children are involved. It breaks my heart that so many stories like yours could be avoided if we just prioritized taking care of people’s basic needs. If autistic people designed society, I feel like that’s the first thing we would do.
“When I feel those autumn breezes shifting, I’ll hop back in the saddle and ride off into the sunset while the credits play…”
Real question, how do you muster the energy to job hop after a draining day at work? While being a writer, at that…
That’s a good question… 😅
I can only really focus on one thing at a time, so I usually do things in spurts. I procrastinate and use pure fear as my motivation, but that’s probably bad advice lol
Bad advice yes, but to a fellow autistic…perhaps the only advice!
That’s what I do, too. I was burned out about 20 years ago. Burn out is like stage 1. Catatonic is closer to where I have been these last 5-10 years.
And PS: I have been applying for SSDI for 4years now.
This: "They’ve been so beaten down by relationship trauma, chronic stress, disease, poverty, loneliness and grief— that they’re stuck in a semi-permanent fight-or-flight mode." This is me to a T.
Yes!! This was my fave quote too, so relatable!
Me too.
Posted this twice, so the generated algorithm can find more that need it!
Thank you so much! I’m glad you enjoyed it!
I hope this teaches so many people!! Thank you for putting my feelings into words!
I’m glad you resonated with it!
Oooops, meant reaches not teaches but teaches works here also 🙌
This is so excellent. Thank you for this!
Thanks for reading!
This was very cathartic to read as a burned-out AuDHD'er on disability benefits with workplace trauma. Thank you so much for writing this. Definitely sharing! I was interviewed by a neurotypical dude about my experiences as an autistic person in the workplace, he was trying to learn about the problems we have working so that his org can see if they can fix them (good luck fighting the Autism Industrial Complex buddy). I already emailed it to him. I really hope he reads it. Speaking of the Autism Industrial Complex, in case you hadn't heard about that before, it's a thing I learned about a few years ago and the author of the study on it whose abstract I read in '21 published a book titled The Autism Industrial Complex on it in '22 that I've started reading! Very excited to learn more about the nuts and bolts of exactly how and why capitalism chews us up and spits us out as it does. Gonna read the Empire of Normality after that, on the recommendation of another autistic friend upon seeing I was reading AIC. I started following you recently and I love your bitter sweary down-to-earth writing. I want to shove it in all the infantilists faces. Fuck them. Thank you again and keep writing 💜
I’m definitely adding that book to my list! Thanks for reading! 😊
$1400/month and don’t you dare have too much other money or you’ll be disqualified. You must remain this poor. Where I live I think the cap is $2000. If you have more than $2000 total, in banks and even cash in your pocket, you obviously don’t need financial support hence you must not really be disabled. Where I live $3400/month is not enough to live. The median rent for a studio apt is almost $2000. If one could find work that keeps them under the $2K they would be one unexpected expense away from losing everything. Car tires are bald? Oil light is on? Can’t go to work because your kid is sick or you missed the last bus or you had a meltdown? Oops, what do you want to give up this month? Or do you want to do a payday loan and start the credit money pit? So they are saying you should either be able to live on $2001 because you are clearly not disabled if you can earn that much or you are self-sufficient if have that much from other sources, or you can live on between $1400-$3400 in a place where $2000 of it goes to rent if you are lucky enough to find that, and depending your disability you may have some nonnegotiable requirements such as ground level, or pets — I know you can override a no pets with an emotional support animal where I live, but I don’t what is required. (It is not a phony online certificate from some random scam site!) It may actually be a doctor’s note.— One may need wheelchair accessibility, public transportation nearby that runs 7-days a week, laundry, whatever. And if they have any children? A studio is not an option.
Also the process to apply for disability is so overwhelming. Even if one gets an attorney or advocate to do the legwork (please do get one if you apply for disability. In CA at least there is no cost to you unless your application is successful, and then their fee comes out of your back pay. — at least that is a contract you can easily find as that is some sort of legal limit thing. Please don’t get ripped off)
Getting county resources often requires going to multiple buildings and multiple forms and phone calls and if one doesn’t drive that means buses, taxis, or the kindness of friends, and there’s limited business hours and appointments and proving over and over that you qualify. It becomes a matter of “If I could do this I wouldn’t need your services” and a large part of the hoops we must jump through are to prevent fraud.
The thing is there is less fraud than the public imagines. Fear mongering by those who politically oppose subsidizing these programs leads to policies that make it harder for genuinely qualified people to access them. They are made to feel like scammers with all of the evidence they must provide. And if one doesn’t have an address? Whew. Being homeless, “unhoused” to some agencies, makes it even harder to prove you are everything you claim.
It can take weeks to accomplish tasks that could be handled in a day if those all of those county programs had the space to provide a resource center together. A satellite office where people could come to apply for everything at once, provide proof once, find out what they qualify for at the start, decide what support they want to avail themselves of (not everybody uses every subsidy they are eligible for. If they are offered $26/month in EBT they might decide that is better left in the kitty or if they have a resource from another organization like the VA) *and* all of this could be accomplished with disability accommodations for those who need assistance. Besides streamlining the process to eliminate so many other barriers for disabled people it would be feasible for proper training on dealing with a wider range of disabilities.
The staff at this resource center would be better able to accommodate the range of communication needs of applicants. They could be provided with tools to work with folks who exhibit autism traits that seem rude. They would understand that some statements are just observations without any judgment attached. ;).
Seriously, everybody would benefit from an expanded understanding of the neurodiverse public. They should be able to recognize some hints and not assume everyone is being difficult on purpose, that they may be just looking at the encounter differently. Their questions are not inane. Their disengagement is not personal. Their special requests are not because they think they are special — they are asking for disability accommodations, as is their right. They are self-advocating because that is the only way they are going to survive in the sensory hell that is that place. That is especially true when it is somewhere they need to be, like their job. Employers need to expand their understanding of ADA to include invisible disabilities of all kinds. A ramp isn’t the only accommodation they need to be prepared to provide as an employer.
And yes!! This notion of more more more on a planet with finite resources would be laughable if it weren’t actually having a terrible impact. Capitalism would be a cartoon villain with its shortsighted goal infinite gains as the kids watching all know the villain will fail because he’s missed the flaw in his own plan and are just waiting in suspense for him to fall into his own hole he’s been digging for himself. But he is taking everybody with him. Capitalism has been digging for a long time without shoring up the sides. It’s all coming down. This is going to be rough. And yes, the disabled population has been living on the brink for a long time with the highly flawed programs (significantly impaired by opposers and their disinformation about who is getting the support and how they are using it) and is going to lead the way down. We’ll let everybody know how deep it is.
[posting without re-re-re-reading so I don’t write more side thoughts. Sorry for any remaining typos and unclear passages. Go easy on the AuDHD thumb vomit]
As an unrelated side note. Why do commissaries accept EBT? Is it because military personnel do not earn a living wage and therefore qualify for EBT? Because that would mean military budgets are being padded by social programs. Or is it because relatives have privileges or retirees or something? I have no experience with military life. My father was out by the time I was a rational being. Please tell me it isn’t that active military personnel need food subsidies.
Damn, this is like a whole article in and of itself 😂 All super important points. I’m glad you commented because I barely got into the nuts and bolts of navigating the disability system. I’ll probably start that process next year. It’ll make for some good content at least.
Now I’m feeling all fangirl that you replied. :D
I agree this was an awesome comment, thanks for all the info! Also LOLOLOLOL @ "AuDHD thumb vomit"! Stealing that! 🤣🤣🤣
I type significantly faster on my phone with my thumbs now than I do with my six finger method on a full sized keyboard. 90% of my access is on my phone. The computer is disappointing with its static keyboard layout and widely spread keys ;)
Did you know there is an 8000 character limit on FB comments? Terribly annoying. lol *and* no indicator when you have exceeded that limited. You are expected to just figure out just how much it too much. 🙄🤣
I don't think I'm part of the target audience for this piece but I'm really glad I stopped by. Thank you for saying our economic system echoes narcissitic means of control. I've been thinking this for so long and felt gaslit that no ones else seems to see it. Thank you. Wonderful article.
Thank you for reading! 😊 PDA autistics tend to have a pretty unique perspective on hierarchy because we hate it so much 😂
Thank you for this. You nailed all the nails firmly on their heads. All of it.
I hope the world revives this!!
Outstanding. Well done, good sir. 😎👍🏽
Sadly, none of everyday people can even accept a great idea Just because it might seem too communist.
Accepting one good policy that is socially beneficial does not make you a communist or a socialist Especially because We all live in a capitalist democratic society It's
Utterly ridiculous But logic does not compute these days
I feel a lot of this, but I was diagnosed with ADHD inattentive type in my 40s. My son is autistic (AuDHD) and I've often wondered if I am too, but it's so hard to get that diagnosis in upper-middle age. I also have Bipolar Disorder II so it could be it's those two sets of symptoms interacting that gives me more autistic traits. I guess exactly how my brain is wired differently doesn't matter that much. Just the ADHD diagnosis was enough to begin my journey towards self acceptance and stop treating my struggling as a personal moral failing. I enjoy reading these articles and knowing I am not alone.