I am a fifty-nine year old, autistic woman who struggles with, well, everything. Part of my journey includes refactoring my entire being and sense of self to incorporate the reality that actually, no, it is not my fault that the culture, economy, and society into which I am born detests me, doesn’t think I deserve help and support, and blames me for things I can neither change nor control.
It’s a harder process than it may sound. Who doesn’t want a reason to blame the world, right? Well, candidly, not this human. I spent nearly forty years thinking I was a superhuman who had beat incredible odds of abandonment, abuse, and neglect; I survived and clawed my way up from the actual streets to make a career in technology that topped six figures.
Turns out none of that is true, even as all of it is. This is the paradox I must untangle to make sense of my life. It is miraculous that I managed as much as I did. But it is tragic that doing so was largely bouncing from abusive company to abusive company, being actively discriminated against and cast aside the moment I was not a masking perfection in the workplace.
Not to mention that the long-term damage of this masking on top of nearly three decades of unrelenting abuse, homelessness, and all the related traumas.
When I first received my autism spectrum disorder diagnosis in 2024, from two Psychiatric Diagnosticians (PsyDs Hopkins and Long), it did not occur to me the world now has reason to immediately consider me ‘flawed’. This became obvious at my last company, wherein I was attacked and bullied daily over my differences in communication style until I left.
I have not worked since then. Now that I’m 59, there’s no way to hide my age without losing the ability to demonstrate career achievements; then again, the gaps between jobs reveals my ‘difference’ in ways that have nothing to do with age, but are equally obvious and eschewed by companies (anything less than perfection being ‘not good enough’, mind you).
I was self-diagnosed an autistic human at age 43. It happened as a result of encountering an online autistic community on Twitter (before it was converted to X). For the first time in my life, humans understood me without a mess of self-flagellation and apologies. I did all the reading and used the online tests (thank you, https://embrace-autism.com/autism-tests/) and when every, single one came back emphatically with numbers/scores indicating that not only am I an autistic human, but very autistic to boot, decided to invest what savings we had into pursuit of a formal assessment for both husband and self.
He is an AuDHD human. I am an autistic human. We both have lifelong history of trauma, burnout, and of course, handfuls of other traits spanning our respective diagnosis.
My reports state that, once I fully unmask, I’ll need supports. My pride does not like this statement, even as my day to day changes as I unmask indicate clearly its accuracy. My mind also does not like it, because I know full well there are no supports out there for me. It is a scary place to be, let alone live.
Since 2017, I have slowly collapsed under the weight of what I now know to call ‘extreme allostatic overload’, more colloquially called ‘toxic stress’. Most humans do not know such a thing exists. I cannot allow myself to spend any more time wishing I were among that cohort, because it is actually about to kill me.
Since 2017, I finally am getting acronyms and labels to explain what was seemingly inexplicable to all my many medical and mental health professionals over decades:
- Atrial Fibrillation – No, in fact, it is not ‘just in my head’, and I do not need “to seek psychological help” (for this). It is a medical fact, validated by my cardiologist. But it took me fifty years to find a doctor willing to hear me, believe me, and order the damn tests to prove it.
- Fibromyalgia – No, in fact, it is not ‘just in my head’, and I do not need “to seek psychological help” (for this). It is a medical fact, validated by both my rheumatologist and my immunologist. But it took me over forty years to find a doctor willing to hear me, believe me, and order the damn tests to prove it.
- Systemic Mastocytocis – No, in fact, it is not ‘just in my head’ and I do not need “to seek psychological help” (for this). It is a medical fact, validated by my immunologist. But it took me fifty-nine years to find a doctor willing to hear me, believe me, and order the damn tests to prove it.
If you’re seeing a pattern here, that’s because one exists, and I am far from the only human being to have experienced it. The official term is ‘medical gas-lighting’ and it has a specific definition, as follows:
–
courtesy of https://link.springer.com/article/10.1007/s11606-023-08302-4
The call out of three of my medical or mental health conditions should, by no means, be taken as the only instances of medical gas-lighting experienced (let alone the full laundry list of issues with which I struggle). Whether as a patient, or a child attending with my mother or even grandmother, I have witnessed them repeatedly hearing ‘it’s in your head’ or ‘perhaps you should seek out therapy’ or any other of a number of dismissive statements rather than providing testing and medical care.
The simple fact is that I cannot reliably function in this world. It hurts to admit it, but in truth, I’m only admitting that nothing about this culture, economy, or society is willing to admit that humans like me exist, deserve to exist, to live, and to do all the things any other human does.
They especially do not want to admit that humans like me need active, mutable supports to operate in the same spaces as allistic humans. They use the phrase “normal” like it still exists. They have biases and preferences that are founded on the idea that their biases and preferences are the only ones that matter, and that any humans like me should ‘just suck it up’ because don’t we know that we’re a minority? Don’t we know that the majority always rules?
Yes, I definitely know you think this and expect it. I’ve lost jobs to humans who think like you on this. I’ve lost access to work as well, since the algorithms filter me out before a human ever sees me, or worse, a human dismisses me because they can, and because no one actually enforces ADA or EEOC mandates in the workplace.
I think about the ubiquity of allistic and ablest bias in today’s culture, economy, and society, and I find that the social model of disability neatly describes everything I see in this world’s systems and institutions. But it still leaves the crux of this human preferential bias hidden.
If I rip away the plausible deniability, what I find is a braid of allistic preference, eugenics, and the twin poxes of exceptionalism and meritocracy –
- I find that humans really like to think of themselves as exceptional, even when it requires the identification and immediate de-humanization of other humans.
- I find that humans really enjoy thinking that other humans are somehow ‘impure’ or ‘afflicted’ and many times, they will associate such de-humanized others with their religious belief that ‘others’ not of their belief system are being ‘punished’ with our disabilities.
- I find that humans especially like to believe, feel, and think that any ‘abnormal’ human is somehow deserving of their disability, and equally preposterous, they should be eager to assuage allistic or abled humans from their own guilt over disregard of/for us.
I admit, it is difficult to reconcile my inherent belief in human goodness with these clearly harmful, hurtful biases and preferences found receiving applause, accolades, and agreement in this world. And yes, it stinks and it sucks and we all know it should not be this way, but it seems that, as usual, humans confuse talk with action and so, lots of talk occurs, but no action.
This inaction? It will be the thing that kills me, just like it is keeping me from work, keeping me stuck, sheltering place because no one believes in public safety enough to mask outside anymore, and of course, keeping everyone in positions that are supposed to be helping me survive instead tell me that I’m on my own and oh, good luck managing it.
Which means they know I cannot… which means they do not care if I live or die.
I am 59 years old. I have had no family or friends for my entire life. I have a husband, but he is mostly worn out from my illnesses and inability to work and now, persistently suicidal himself.
I am soon to be diagnosed formally with cancer. We all know it’s coming, but everyone is staying quiet from my doctors to the radiologists. As if saying the word or not will affect the reality that the mass is blood fed and growing.
They won’t be able to MRI the mass until Oct 14th. I know a month is unlikely to kill me, but I also remember my grandmother going from biopsy to death in under a month. There are no rules with cancer. So I likely am spending this month in quiet terror, awaiting what we all know is now inevitable.
We’re already $1600 in debt from the radiology work alone. If you’ve read all this and are still here, I could really use some help. Anything is appreciated and useful. A job would be amazing, but just helping keep the bills under control so we can maintain our weekly stay studio and not become homeless would be so wonderful.
https://venmo.com/u/YeshesOnline (donations requested, welcome, and deeply appreciated)