Part 1 of 2
My name is Jacqueline Schumacher; I am 38 years old, and I was born in Pittsburgh, PA. I grew up near Cleveland, Ohio, and currently I live near Phoenix, AZ
I do not work, and I am not looking for work, and that’s an interesting distinction from being “unemployed” which I learned about in an economics class (minor special interest of mine). The last time I had a job was 2013; then in a period of extreme stress for my family I crashed and entered burnout. Of course, I didn’t know what had happened, and neither did anyone else. I just couldn’t function anymore in the one metric which our society uses to measure the value of a person: the capacity to do work.
My masking endurance just isn’t what it used to be, and I can’t mask much at all anymore; that makes me de facto unemployable despite what companies say publicly about supporting a neuro-diverse workforce. I’ll mask for the sake of the relationships I am desperate to keep, like university acquaintances, friends, and family, but once I am alone again, I shake and sob from the effort.
Before I finished school, my campus therapist suggested that I apply for disability and Medicaid; I don’t know if her suggestion was some tacit acknowledgement that I don’t have the executive functioning necessary to hold a job equal to my education. I suspect that it was, because my executive functioning is mercurial—honestly, just typing up my story here now has taken a lot of personal cheerleading to get myself ready for a task requiring concentration and coordination
I don’t know how the Social Security Administration sees the situation, though. I doubt they are very understanding—even their own website warns that diagnosis of a disabling condition is not enough to get disability. That is bad for someone like me, but I suppose this is part of the whole medical model of disability—take these pills, walk it off, and get back to work.
Something surprising about me is that I also have Attention Deficit Hyperactive Disorder—Combined Type (ADHD), and I hate it. Hate it with every breath in my body; if an experimental brain implant or CRISPR gene editing to eliminate ADHD were ready for human test trials, I would beg, borrow, or steal to become a volunteer for the treatment. If neurotypical people had any idea how debilitating ADHD is—especially regarding regulation and control of emotion, impulse, and motivation—I’d bet that that’s the neurological condition humanity would try to eliminate, and not the Autism Spectrum.
The neurotypical person can’t fathom how extraordinarily freeing it is to have nothing hindering one’s executive functioning, which is the most basic societal expectation of a competent adult—the ability to know how to plan and execute intentions consistently and without procrastination or repeated reminders. Or how fortunate they are to be able to take rejection without collapsing into a shaking, sobbing wreck because their world doesn’t crumble to dust from Rejection Sensitive Dysphoria. Or how wonderful it is to see food and think “I’ll have a little bit” and indeed only have a little bit, because that was enough.
None of this is possible in the ADHD brain:
Eat that whole pizza! Go for it!
Have sex with that guy you just met! Go for it!
The light’s yellow—you can make it! Go for it!
That huge project is due Monday, but it’s okay! You always do your best work at crunch time! You’ve got this!
And yet the neurotypical’s ADHD stereotype remains a disruptive little boy who “just needs some firm discipline.” Which is a depressingly expected response from the neurotypical; beating and berating a child into compliance has such a sterling record of success, after all…
Yet for all my struggles—somehow—I managed to complete a Bachelor of Science degree (cum laude) from the University of Arizona and achieve the goal which eluded me for twenty years: finish a baccalaureate. I try to not compare myself to students from my grade school days, but realistically that is not possible. I am simply too self-aware to not realize that the expectations and dreams I had when I graduated from high school could not overcome the poor choices I made because I was an undiagnosed Autistic with raging, untreated ADHD, and the odds of unsupported success were negligible.
However, I still have dreams and goals—they are just not the same I had as when I began adulthood. My degree is Animal Science: Racetrack Industry Program—Business Emphasis, and I want to get involved with horse racing marketing and promotions. Horses are my first special interest, and my greatest—I love racehorses, racing history, wagering, how tracks work, and as with most other Autistics few things are as enjoyable as talking about a Special Interest.
Of the many aspects of Autism which the neurotypical population does not understand, I wish the physical toll Autism takes from the body were better publicized—especially the strain on the heart. Also, that Autistic Masking is more than just acting neurotypical; it is anxiety and hidden stimming like teeth grinding and jaw clenching. Masking is about normalizing the unnatural and for the benefit no one. An Autistic can no more learn to behave like a neurotypical than a neurotypical can learn to behave like an Autistic.
For my personal situation, the worst physical aspect is the gradual breakdown in fine motor control and dexterity because my brain doesn’t talk to my hands as reliably as it used to. Typing has become more difficult, and I’m worried that soon I won’t be able to drive safely or play a musical instrument anymore.