What is success?

I will write a post soon about Autism Speaks and how now is the prime time to talk to their corporate partners about withdrawing their support.  That’s something that I’ll focus on after this weekend is over, and in the meantime, if you’re reading this, please feel free to sign the petition here, and visit the webpage here

But today I need to write about something that’s been bothering me for the past few months, and something that I think a lot of non-neurotypical people, whether they’re autistic or not, will understand.  

And that is NT standards when it comes to career choice and their terms of “success”.

I work at the biggest fast food chain in the world.  I worked there for a full seven months and received a promotion and a raise.  I now make above minimum wage, but I don’t make good money by any stretch of the imagination.  I celebrated the day that my pay was more than $8.00 an hour.

A little bit of background – I am in my early 30s, married, with two children.  I have a bachelor’s degree in English, and I have worked in a variety of fields, from education to retail to food service to childcare.  I have done many different things, but when it came time to reenter the workforce after being a stay at home parent for three years, I chose what most people see as a simple job (“one that even a monkey could do” is how many people describe it) because it’s something I knew I could excel at, and the hours were do-able with two children in school.

But it is anything but simple for me.  

Oh, it’s not that the job is hard in and of itself.  I work in the drive thru, mostly in the early morning hours, which means that I make coffee, take orders, and cash out people’s orders before they reach the second drive thru window and receive their order.  At its essence, all I need to do is listen to people’s orders and press the buttons on the touch screen monitor which communicates the customer’s order to the people working on the grill.  

It’s also not very stressful socially, on the surface.  My social interaction with people is just seconds long.  I smile, ask if I can take their order, thank them, and greet them again, tell them their total, take their money, make change, and thank them again.  It’s a simple formula, and it’s why this works so well for me as an autistic person – because scripts are easy.

The problem is that many times, I’m scheduled for ten hours of this.  Not only is that physically demanding to be on my feet for that length of time (and yes, it is), but it’s socially demanding in a way that makes my brain feel fuzzy by about the 7th hour of work.  

Multitasking is something I’ve had to learn, and I’m still not entirely good at it.  Sometimes, customers at the window are angry that I’m too slow because I’m taking an order and I can’t listen to two people talk at once (one through my headset and one at my window) and people over the headset are angry because I’ve asked them to repeat their order.  

Add to that the amazing amounts of noise that permeate the building, as well as the noise that comes onto my headset with every freaking customer (it’s a beep, a loud, horrible beep) as well as any residual noise outside (sirens, the noise of a truck or car running when it’s entirely too old) and I’m skating on the edge of a shutdown or a meltdown every single afternoon/evening.

This doesn’t even touch on the fact that I often have to endure racist and ableist comments from managers and other employees, some even to my face because surprise! Many people haven’t figured out that I’m autistic, even though it’s in my employment papers.  

Last week, I attended an event with my general manager at the local Ronald McDonald House (which, when we’re talking about charities, is definitely an organization that you should support – the money funds a place to stay for parents and other family members when they have a very ill child in the hospital).  I love doing these events, the Share-A-Meal, where a group of us from our store, which includes customers, management, employees and our families and we cook a meal to share with very scared, very stressed, very tired family members of sick children.  This time, we shared a holiday meal, and I enjoyed every last moment.  The owner of our franchise was even there, and I frosted cupcakes with him, which was kind of a fun thing to do.

The drive on the way over made my heart sink, though.  She was discussing another employee’s conversation earlier in the day, a quite young employee (in his early 20s, if not younger), and how he had been discussing wanting to have children.  I don’t remember her exact words, but she basically insinuated that people like him should never have children.  When she said “people like him”, what she meant was “developmentally or learning disabled”, as this person has a diagnosis of ADHD (and probably, from my interactions, has other disabilities that maybe resonate with me a little bit  – I won’t ever go as far as to diagnose someone, but he pings on my autism radar pretty hard).  She meant people like me.  

I hear the “r” word from every employee except two – one of whom is autistic like me and one of whom has a diagnosis of Tourette’s.  I am grateful to work with a few people who understand the impact of that word, who understand what it feels like to hear that and be brought back to your childhood all in a second.  

I had to ask advice the other day from friends near and far about how to respond to something at work, and this is part of the problem with Autism Speaks, just so we’re clear.  There is a woman who comes through the drive thru on at least a biweekly basis.  She’s a regular because she is the store manager of one of the retail stores up the road from us.  She pays every single time with a Chase credit card that uses this program, and is embossed with Autism Speaks’ logo. The first time she saw my ASAN bracelet, she wrinkled her nose at it.  Now we just pretend we don’t see each other’s logo, but I regularly have to take a moment to calm my heart rate when I swipe her card.  The first few times, I did actually have to find a way to step away for a moment and take deep breaths because I was on the edge of a panic attack.  The thought that my hand was responsible for swiping that card and giving that small percentage to Autism Speaks sickened me.  

These are things I deal with often.

That doesn’t even touch on the real topic of this post, which was supposed to be about NT standards.  Here’s the thing – as much as I want to have what is in NT people’s eyes, a successful career, I can’t guarantee that is going to happen.  85% of disabled people are unemployed or underemployed.  I fit the latter category, I believe, as I work in a field that I am technically overqualified for.  1 in 3 autistic young people have never had a job. I face some serious roadblocks to being able to obtain and keep a job that pays enough for me to live off of.  

Because of the fact that I work at the only fast food restaurant within walking distance of my alma mater, I regularly encounter teachers and administrators who were once my teachers and administrators, as well as former classmates who work there now.  One of these people regularly gives me a look that says “I’m disappointed in you.  I expected so much more.”  Every single time, I want to cry.  I have a very difficult time taking her money because I want to explain.  I want to say “you taught me.  You know my weaknesses and my strengths.  Going to college doesn’t change those things.”  But that is what it is to be able bodied, and privileged, and to have graduated from the same sort of school you teach at, which is a private Christian school.  Being all of those things means that you don’t have to think about the difficulties of life, that we live in a society that doesn’t allow for autistic people to define our own success.  It means that if you’re disabled, you have to do more.  You have to prove that you’re as good, if not better than your NT peers.  

I can’t do that.  And in her eyes, that makes me a failure.  Never mind that I have a college degree that in many ways, I can’t use.  Never mind that as much as I’d love to go back to being an educator, I just can’t do it because I often lose my train of thought and am easily manipulated (by 12 year olds!).  

This isn’t a pity party.  I’m not feeling sorry for myself.  I simply know that in the society in which I live, I cannot do exactly what I want and pay the bills.  I know that I will have difficulty selling myself in an interview.  I will have difficulty navigating social situations.  I may not dress in a way that people consider appropriate for my age. Many people assume I’m far younger than I am because sensory-wise, I prefer a tshirt and jeans to a dress and high heels. 

Maybe one day, I’ll live in a society where being autistic and employed means something different for me.  I hope that by the time my children reach adulthood, they have far more opportunities to shine.