I’m on the record at the Vocational Rehab center for having PTSD, but the majority of what prevents me from working comes from being autistic.
Specifically, the discrimination that comes with it. The complete lack of understanding or trust in the autistic experience leaves my support infinitely baffled about how to help me.
A Conversation with a Counselor
My last visit to Voc Rehab demonstrates this phenomenon perfectly.
I tell my counselor that showing up and doing the work has never been enough for me. Then she suggests my time might be best spent at home working on myself some more… as if I am the problem. As if trying and trying and still managing to disappoint others is a lack of accountability on my end.
I say perfectionism is killing me, that masking is the process of “working on” yourself until you don’t even know who you are. She says she agrees that I’m an over-thinker. Then, she suggests I work on myself some more.
I tell her I am too isolated and need social support. She says, “Walk to the library.”
I tell her about the groups I’ve joined, the drawing class I took, the jobs I’ve tried, the employers, acquaintances, friends, and family who either left or invited me to leave. She expresses skepticism and suggests that we close my case so I can double down on that personal growth.
I want to scream, “But it’s happening right now! You are literally doing what I’m describing.”
Instead, I try to explain that my impairment is social navigation. She suggests I sit in on a workshop to learn interview skills.
I tell her this is masking and it will lead to me setting an expectation I can’t maintain. It’ll lead to more of me showing up and doing my best only to disappoint and be asked to leave.
She asks me why I feel so strongly that I need to work.
I tell her that I’m bored, that I want to feel fulfilled. I want to provide my own financial stability and help my family.
She floats that I could be happy existing without health insurance, as if not having access to healthcare isn’t a big deal. As if not being able to meet my family’s basic needs now doesn’t translate to bigger issues– like my son’s future or a retirement plan. What if a problem comes up with the house?
She says that self-employment won’t work for me, and I’m utterly baffled. After all these meetings, she doesn’t seem to know me at all.
Self employment has literally been the only way I have managed to get what I have. I remind her about the business I ran for six years. It was a “crafting” business, so she smiles like I’m being cute. She tells me that I haven’t “figured out” self-employment yet.
But I’m not delusional. That business didn’t turn a big profit, for sure, but I learned every skill on my own. I had to teach myself.
My education is incomplete, but I’ve figured out enough that it counts. What I have done up to this point matters, dammit. It matters.
It got me the small apartment that helps my income stabilize a little and my first new car in 10 years. It got me to the point where I’m paying on debt instead of acquiring it, mostly.
And when my arms were too injured to keep designing patterns, I needed a new gig. That’s been my focus for the last two years. I’ve been showing up.
It’s just that my value hinges on having people skills.
The Accountability
I don’t always have people skills.
I’m impulsive and indecisive. I have executive dysfunction. Maybe ADHD.
I can’t have a full time job or a boss, because self care is a major commitment for me.
Also, I don’t let people tell me what to do anymore. That privilege has been revoked.
While ableism is certainly part of what fuels my drive, so is the desire for peace and comfort. Treading water isn’t the same as being stable. There’s no way to control the waves that inevitably come.
No matter how many mistakes I make, I don’t give up. I deserve to feel purposeful.
The Aftermath
Social functioning is my greatest impairment, and all I hear is that personal growth is the answer. There is no one who can help me. My requests for support aren’t reasonable.
My needs are imaginary.
I am unemployable to the point where even I shouldn’t hire me.
It’s enraging. I’m there, time after time, doing my very best and I leave with discouragement and despair. My automatic thoughts fill with suicidal ideation. I start having heart palpitations. The fruits of my labor.
I go home and talk myself up like, “No! You’re a bad ass, a Queen. You can do this on your own.” I can’t. No one can. Most people aren’t even being asked to.
I vow to set up a bullet journal to help me organize some goals. “Let’s get to work on something fun,” I say.
I go to bed, braced to hold my head high among the naysayers. It’s time to outrun, “I know you, you can’t.” Again.
And in the morning, I am paralyzed with the notion that nothing I do will ever be good enough. Suddenly, I don’t have the energy to even start. I can’t think clearly or focus. Perfectionism has me.
It feels like it’s my fault.
To be continued…in Part 2.
- Work Hard and Catch Up: Patterns in a Neurodivergent Career - June 27, 2020
- Teenage Rebellion: An Autistic Teenager’s Guide to Revenge Through Self Care - March 13, 2020
- 10 Good Boundaries to Have as an Autistic Advocate so Haters Don’t Burn You Out - February 7, 2020
12 Responses
I feel this. This is basically my life. Conformity vs self/heart. You can force yourself to conform for a time, mask, while you use up every ounce of energy, self and heart till drained, self-lost and collapse. The system/society is broken, not you.
Everyone deserves quality of life whether they perform or conform or not. We should be able to live as ourselves – supported enough so we can give support or work in a way that aligns with ourselves. We shouldnt have to live up to neurotypical societal standards.
There are countries and groups of people that believe in, or are looking at implementing a universal basic income for all humans, just for existing (esp as tech advances and can take over many jobs), it means people can be more creative, inventive, do jobs because they want to – for extra, it upholds all the human rights rather than comodifying human beings and encouraging capatalism, endless growth and ‘more, more, more’ culture
“When a flower doesnt bloom, you change the environment it grows in, not the flower” Alexander Den Heijer
Seeds need the right nutrients, temperature, conditions, moisture etc.. or they just dont grow. You cant force it to bloom
I am SO SICK of human worth being tied to “earning potential”. I’ve NEVER been able to hold down a “normal” job for more than about a year or two without serious stress and the “job” I have loved the most is one that I can’t EVER put on a resume — and oddly the one that allows me to use “people skills” in the most innovative way.
I LOVED being a Tarot Card Reader on Jackson Square in New Orleans, but that isn’t a “REAL” job as far as people are concerned — never mind that was how I paid for rent, food, and all my other bills for over a year and a half on TWO SEPARATE OCCASIONS and only stopped the first time because Hurricane Katrina interfered.
The city I’m in now doesn’t allow public (on-street) Tarot Card reading in the areas where it would be the most lucrative, plus there’s a good block of the year that it’s too cold for it, so I’m in school to try to figure out how to be an independent “office” for Massage Therapists — because I’m also trained as that
What an excellent read. In a similar place at the moment and its difficult to put into words. Reading this article been a great insight to others experiences. Look forward to part 2.
The hostile environment in regard to autistics and employment is a topic of particular interest to me. Whilst my own employment history has been more stable than many I’ve had to pay a heavy price to keep it that way.
This was an excellent piece to read and I look forward to future instalments.
I never seen someone so close to my experience. Most autistics I have spoken to don’t get how I can let myself be so mistreated and neglected by professionals. So funny when a therapist sits there and empathizes with me on how I am treated (“I am sorry, I don’t understand how people could treat you that way!” then the next sentence is “Instead of freezing, why don’t you try saying other things?”) there they go right after doing the same thing. One therapist once my wife left the room to search for something in her bag said to me in a quiet voice that my wife wouldn’t hear “You need to stop playing victim! You do realize that if your wife has a hernia now that it will be your fault?” I have had the same experiences all my life since a kid. Fuck therapy, fuck Dr’s, Fuck Voc Rehab they waited one year to tell me they didn’t help me because they felt I was “playing victim”. If you read this Vocational Rehabilitation… FUCK YOU!!
Sometimes non-autistics really don’t get how disabling the outside world can be to us.
I’m thinking of quitting receiving career coaching services too because it’s based on the whole premise of masking to hide any autistic traits and “act normal” in order to obtain and keep jobs. I recently skipped out on going to an “interview workshop” at some place called the “one stop career center” because I knew the workshop would just be one big lecture about the importance of masking to appear neurotypical in order to be accepted by society. I want to find a job that’s willing to accommodate me and I can feel safe being myself there.
What a heartfelt rant. Thank you for the honesty. I am 45 and have, this week, for the first time in my life, come to realize that I might very well be autistic. It was never caught as a child because I don’t present certain stereotypical “symptoms,” such as being bad at communication or unable to socialize. From the self-tests that I have been doing online this week, I have realized that my masking skills are exceptional. While this ability helped me get through childhood and teenagerhood, it certainly has not helped me to thrive as an adult. I have almost never held a job longer than about a year and a half, same with relationships, and my genuine friendships are very few.
Certain other things also stand out to me now: my literalness and inability to just automatically “know” what others (peers, family members, and employers) want without them explicitly spelling it out. The exhaustion I felt at jobs that required constant availability to customers, disrupting my day. Being seen as defiant because of this. The energy it required to get back into my workflow after every interruption made me feel like I had worked 12+ hours instead of eight, every day. The constant sense of never truly belonging or fitting in socially or professionally, no matter how hard I try. The disappointment I’ve often sensed from others whenever my persona began to falter—as it inevitably must; no one can maintain a false mask indefinitely, nor should they have to.
Because I have never been diagnosed as autistic and the question hasn’t even come up, I have always thought of myself as being neurotypical, and therefore thought of myself as a failure at life because I couldn’t get any of these things right, and I could never understand why. After a ton of research a few days ago, I finally saw what has been missing for the last four decades. I am not neurotypical, and therefore there is nothing wrong with me. The relief that just knowing this has brought to me has been immense.
Now I’m trying to learn more, and I’m really thankful for posts such as yours. They are helping so many unanswered questions finally fall into place.
May your search for answers and understanding be far more successful than your employment and relationships!