Autistic People May Play “Beat the Clock” to Find Financial Security Before Having a Breakdown
Here’s something very few people know about me: I’ve been on disability for the past 5 years. I usually keep it private because of the stigma attached to it, but I’m not now, nor have I ever been, ashamed to be on disability. It has made my life livable in a way it never was before, and I opened with this admission because I want you to see how I got here.
Too many times, people tune out as soon as they hear the word “disability” unless the person who is on it has a visible condition such as blindness or being in a wheelchair (not to say that blind people or people who use wheelchairs are all on disability, far from it, but able-bodied and able-minded people often think of disability as laziness unless they can physically see a reason for it).
Well, here’s my story, and it might help you if you’re autistic or a neurotypical person who has an autistic person in your life.
My Childhood Was a Nightmare
If you’ve been reading my writing for any length of time, you know my childhood was traumatic. I may or may not get deeper into that as I progress with this blog, but I never want this blog to be “The Jaime Show”.
This blog exists mostly for translating autistic thoughts, feelings, actions, and behaviors into explanations that help neurotypical people better understand their neurodivergent loved ones. In other words, it will never be “The Jaime Show”, but I will talk about what I’ve been through in the context of helping others.
There’s no easy way around this, my childhood was an absolute nightmare. I was born in 1979 to a 19-year-old mother who wasn’t expecting or ready for a child. And, 40 plus years ago, a child was only considered “special needs” if they had, again, a very obvious and outward-presenting set of traits and characteristics considered disabilities.
Ergo, I wasn’t even thought of as having any type of special needs. Nobody would have thought for a second that I was autistic, the thought never would have even been entertained. Furthermore, since I seemed to do reasonably well in school when I was in the lower grades, a learning disability, a poor working memory, and ADHD were also not even thought of (although I did get an ADHD diagnosis at 13).
As I said, I wasn’t thought of as autistic, but I was thought of as a LOT of other things:
- Rude
- Awkward
- Mean
- Stupid
- Lazy
- Uncaring
- Evil (Yes, evil)
- Possessed (Not making this up)
- Crazy
- Creepy
- Nerdy (OK, that one is true)
- Disgusting
To give you an idea of what I mean, I’ve always talked like a 40-year-old professor. I had a flat tone to my voice, I made barely any facial expressions, and fashion made no sense to me. I was already huge into Star Trek: The Next Generation by the time I was 9, and it was almost all I ever talked about.
I also spent most of my time with my grandmother who raised me because the other kids around me either quickly tired of my autistic quirks or they actively abused me any chance they got.
I was mercilessly and repeatedly bullied by kids at school and even by some teachers. My home life was also very confusing, unusual, and oftentimes, quite abusive, as well. I don’t want to go into detail here, but suffice it to say, I have a really good reason for having PTSD and OCD.
Work Didn’t Seem to Work Out
I moved out on my own at 17 years old because I couldn’t take getting into trouble almost every day for something I supposedly said or did or didn’t say or do or a look I gave someone or my tone of voice, or what-have-you.
I worked full-time or as a temp, but I would get fired frequently because, again, I’m autistic, and everybody around me was neurotypical. We didn’t speak the same neurological or social language, so, if you refer to the above list, I was still often seen as (with the possible exception of evil or possessed) those things in adulthood, too.
Somehow, I kept going, though. Eventually, I started going to community college at night, but I continued to struggle with learning, understanding, memory, and comprehension. Like many autistic people, I excelled in certain classes and bombed in others. Also, the stress of working full-time while also going to school would frequently cause meltdowns and shutdowns, but I didn’t know what they were at the time.
But, and here’s the point of this entire article: My thinking in going to school was that I would push myself and push myself and push myself no matter how bad it got because, in the end, if I got my degree (I was going for graphic design), I would finally be able to work from home and “rest” from being around other humans in socially confusing and emotionally exhausting work environments.
That was my only goal. Get a degree and get a job where I could work from home and make a good enough income to sustain myself while dealing with the outside world as little as possible.
Out of the Frying Pan and Into the Fire
Of course, that didn’t work out. At 30, I finally dropped out of school for good after having gone, left, gone, and left so many times. I gave up as I was headed for serious burnout, and I knew it. I just couldn’t go on.
Instead, my very impressionable self ended up suddenly moving from Connecticut where I was raised to another state with my then-partner who would turn out to be one of the cruelest, most manipulative people I’d ever met. We spent almost 3 years together, and when I finally got out and went home, I was a shell of my former self. There was hardly anything left of me at all.
That’s too long a story to get into now, but, my point is, I saw that school wasn’t working out, and my debts were piling up, and nothing made sense, so I just left on a whim with someone I’d known for years but only online. I just wanted to start over and live a simple, more relaxing life. That did not happen. There was nothing simple or relaxing about that relationship, and I will be scarred for life.
“If Only I Could…”
When I returned home, I didn’t have a place to live, a car, a lot of money, or a steady income, so my aunt let me stay with her. Unfortunately, the living arrangement didn’t work out after a while due to other people moving in and terrible chaos ensuing.
In 2014, at 34, I ironically moved back in with the roommate I had suddenly left in the lurch 3 years prior when I moved away with my ex-partner. (The roommate, understandably, resented me for that, but I wasn’t aware of that at the time.)
While I was living with both my aunt and then the roommate, I still kept trying to work from home, scraping together a living as a writer. It didn’t pay much, so I basically always had to be “on the clock” all the time just to get by.
Meanwhile, I had never dealt with the trauma of what happened with my ex or any other traumatic experiences I’d had since being back home. I just kept working, again, towards that ultimate and only goal: Being able to have the financial freedom I needed to be home and safe (preferably on my own, which is the last time I’d remembered being emotionally stable).
The Breakdown
In the summer of 2014, it all came crashing down on me. My entire life, every bad experience, every failed job, every failed relationship, family trauma, bullying, etc., it all just hit me at once, and I lost my ever-loving mind.
I’m not just talking I had a mild panic attack and went to the hospital. Oh, no! I had panic attacks and was unable to sleep for 3 MONTHS before I finally checked myself in. My OCD had gotten SO bad, and I had become paranoid. I wasn’t thinking rationally at all anymore, and I’d dropped down to an unhealthy weight and was picking my skin so fervently, it looked as though I had been repeatedly attacked by a swarm of angry bees. It was horrifying.
I stayed in the psychiatric ward for 5 weeks, which is not customary for any hospital, but it was that bad.
I may not have known it at the time, but I’d had the ultimate autistic burnout. There was plenty of trauma and PTSD in that, too, but I’m convinced the bulk of it was me living an entire life in survival mode just waiting for a big break or money I could live comfortably on, so I could take my mask off for good.
But that never happened, and it was never going to happen, and I wish I had known back then what I was doing to myself; chasing a financially-independent capitalist dream that my brain, body, heart, and soul were never cut out for!
I Can Finally Breathe
It wasn’t long after my hospitalization that I met an amazing therapist who diagnosed me as autistic, and my life has been better ever since. I had applied for disability while I was in the hospital, and, thankfully, I received it without having to show up in court or fight for it. (I wouldn’t have known what to do.)
Disability has saved my life, and it has made my life worth living. Don’t get me wrong, I don’t make enough on disability that I don’t have to work. I do work part-time in a writing/consulting capacity, and I love what I do, and it gives me the supplemental income I need. I also get to pursue writing this blog and helping others while I do it, which enriches my life greatly.
However, I’m poor. Like, just-enough-for-rent-and-bills poor. But, I’m happy. I’m secure. I know I won’t have to ever worry about the next time I get fired, and I don’t know why, or masking 8 to 10 hours a day just to survive an office job, or going to school but not understanding the material, and having professors get exasperated with me and trigger my learning trauma.
In the 5 years I’ve been on disability and had my autism diagnosis, I’ve never been more “me”. I’ve stopped preparing for life and started living it. I don’t try to be something I’m not anymore just to scrape enough money together to exist. I’m me, fully me, and I have no shame in it.
I’m able to work on good days, rest on bad days, take time off, make my own schedule, keep a safe, comforting routine, and get the most out of my ongoing therapy.
Be You Now
I guess the takeaway in this very long article is this: If you’re autistic, you may be doing something similar to what I did. You may be working yourself half to death for a possible future career that you’re not meant to have in the first place. You may be burning yourself out because you’re trying so hard to live up to the neurotypical idea of success.
Cut yourself some slack. Yes, most people have to work to survive, but don’t spend years or even decades trying desperately to “catch up” in a world not made for you.
As neurodivergent people, we have our own unique gifts to offer the world, and, even though they may not know it yet, neurotypical people do need those gifts.
Don’t be like me and wait until you have a nervous breakdown to finally and fully embrace yourself as you are: Do it now.
Books for Better Understanding the Autistic Brain
(Whether you’re an autistic person who is newly diagnosed, or you have a loved one on the spectrum, the books below can help you better understand the autistic brain.)
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Hi Jaime — thank you for sharing. I hit my autistic burnout last year and have worked very little since then. I’m wondering if you’re in the U.S and if you applied via SSA? I’d like to look into it but have anxiety about going through the wrong channel and plus… executing….
I got my disability through an advocacy group that appears to no longer be in operation, but I applied while I was actually in the hospital. I could never have done it on my own. (I think that’s the real kick in the face, too, that the people who need it the most are the ones who have to usually pay for someone to help them). I’m sure there are advocacy groups still out there, though. You could also contact a lawyer for a pro-bono consultation.
Thanks Jamie, I have been down a road a little similar so it’s a relief to read your words. I ended up on disability as well. Thanks for the material, the thought that you put into the writing. X
Thanks so much for your comment, Adam. 🙂
Please tell me the secret for getting disability. My claims have been denied over and over for years. What do you have that the government will approve as disability? For me it’s autism and PTSD but apparently that’s not enough. I ask in all earnestness. I’m going to be homeless AGAIN if I can’t find an income and the story in this article is so similar to mine. All the jobs. All the abuse. All the breakdowns. All the survival mode. I’m 41. When i can have relief? Why do some people get awarded a disability claim but I have to have weekly meetings with a social worker to just help me make phone calls to the law firm and social security disability office to pursuse my denials in court for a battle of 7+ years, I’m told by othr autistic adults. 🙁 🙁
I’ll send you an email so we can talk.
I have the same question.
I’m 41 years old and relating to nearly every specific thing you’ve shared about your upbringing here. I’m currently in what might be my worst burnout to date(which for better or worse I’m hoping is my last). I have no idea how I’m not already homeless. I can’t find the will to take care of myself at all. I’m in constant horror about having to send my son to school in a few weeks with no reasonable assurance he won’t see the next active shooter event this year.
I love having space for myself, but I also love and miss Rainbow Gatherings where everyone in attendance was apparently there to unmask and be real with each other.
I used to believe I only wanted a place all to myself, where I could have my basic amenities and be carefree away from the pressure of neurotypical bullshit.
What I really want is a community of people like us. A sort of Shire where we each have our own Hobbit holes and still come out to enjoy a good drum circle or stories around a fire.
I want people like us to have some place on this earth to reclaim indigenous rights for ourselves. I want us to be able to just help each other, to focus and support our own projects, and to be allowed to mediate in ways that neurotypical structures simply can’t conceive of.
I think at least half of us could be earning decent income right now if we just had the right friends to record, edit and upload content.
I’m pretty sure we could be raking in fortunes by following the steps of any online business plan, if we just had the right neurodivergent input to propel one another forward… If it’s actually been possible for anyone to make money from copywriting and SEO and afford to live a life of affluence, then surely We could have a neurodivergent marketing agency, completely scrum managed and providing a basic income for our own tribe.
We don’t need the expensive toys and status symbols. We derive far more satisfaction from authenticity. What if we brought it in, pooled together, and formed a real community where masking isn’t necessary so that none of us have to keep experiencing burnout?
Right now I need help with any kind of income at all, but when I get anything coming in again, everything is cheaper but the dozen, right? And we’re logical people who can recognize the advantage of trying things differently, aren’t we? What if we cut our loving expenses by self-organizing? What if, for example, we all chipped in to buy Epsom salts by the pallet so none of us would have to deal with a retail store to have a nice bath in our homes? What if we could enjoy some social interaction by having our own get togethers where nobody is judging or throwing shade?
I’m still waiting for an appointment to be officially diagnosed, and I have no idea if I’ll ever qualify for disability, but I don’t even care about money at all when no amount of money can buy the tribe I hope to find.
I long for this community, too, Jared. If you ever find it, please consider me. I hope all of the best for you.