Autistic executive dysfunction works differently for all of us. Some have more difficult areas than others. Some have varying degrees of all aspects. Most of us a lovely mixed bag of difficulties that very few people are willing to try to understand because it doesn’t “look disabled” or it is something “everyone has”. But, it doesn’t have to “look disabled” to exist, and no, not everyone struggles on this level unless they are diagnosable.
To give you an idea, I’ve been distracted by TV about four times since the start of this article; I went back to settings once; I went to a different webpage once; and I took a break to tweeze my face. No, it’s not ADD; I hyper-focused to set up the look of the blog. In fact, I’m really good at setting something up, but I really struggle to get to the next step.
I know plenty of people have had trouble with a blank page, but this is far worse. My ability to write is deeply dependent on whether I have the spoons to think through what I want to say and actually get it down in writing. It took a nap and a few streaming shows and half a biography to get to this paragraph. It may not seem like a big deal, but this “work style” would never be tolerated in a work situation. And, that’s ultimately the rub for me, aside from “poor” social skills, this difficulty is probably my second hardest life struggle.
And, this one cannot be “trained” out of me. This something the ABA enthusiasts never seem to speak on: burnout and even just social exhaustion. It’s like it must not exist if they can’t “fix” it (spoiler: they don’t actually fix anything). But, you don’t live my life. You have no idea how hard I have tried to fit into the workforce, how many times I have beaten myself up for not making it yet again, and worse, for years not knowing why.
The shame of being a failed neurotypical was only amplified by my father who always knew just how to stick the knife in and turn it. I heard the word “failure” at some of my lowest points. Instead of giving me a hand up, he spent his time kicking me while I was down. I don’t know if he thought this was supposed to make me tougher, but it didn’t. All it did was prevent a relationship from ever forming.
In addition to not being able to complete tasks, I am impulsive. This has driven my family bonkers. My mother’s word for me was “impetuous”. She’s even less patient than I am, but this isn’t about her. I say exactly what is on my mind most of the time, although I have developed a semi-rickety filter. Most people would say I say I shamelessly say whatever is on my mind. They don’t know what I have actually held back.
I flew out to California on a whim with a guy which ended horribly. I got to see San Francisco though. I moved in with my ex-husband after dating for a month. That ended in divorce (although in my defense, the relationship did last 8 years). I got called a failure for that too. I decided on my graduate program before really understanding what it was I was going to be learning. Oops. Spring admission got me away from a toxic relationship, but it messed me up financially probably for forever.
Further, while I do have difficulty with cognitive flexibility, it really hasn’t turned into elaborate rituals or schedules. Most of my life I was on my parents’ schedule. I didn’t dare try to impose my needs upon their lives even it meant for stress for me. It wouldn’t have been tolerated for a moment. At the same time, they would tell you I am the most stubborn person they know. And since I ate my stress, I just got called fatty and lazy, which I further internalized as my own failings.
I now help with bills regularly thanks to SSDI, so I’ve taken some power back in my life. I’m not entirely at their mercy for everything. Begging for toiletries in my 30’s was really not a good time in my life. But, what do you do when you don’t know how disabled you are and can’t find adequate work? You rely on anyone that is willing to put up with you. I know so many like me in the same position. Some even have disability, and their parents take the money for the house. Asking for some to help with bills is entirely reasonable, but taking money from an adult and forcing them into a child’s position to beg for their own money is evil.
My lack of cognitive flexibility has just produced more frequent and longer sustained burnouts. Feeling always at someone’s mercy whether for shelter or employment constantly stressed me out. My lack of ability to think it’ll all work out is backed by many years of it not all working out. Hell, I don’t get a day to enjoy when something finally goes right. My luck is just amazingly poor.
I also struggle with certain types of planning. I tend to think a task will take less time than it does. Or like this coming Monday, I’ve crammed more items to the list than I could ever manage. I’m just not learning this one with age. I’m often too early or too late for appointments. I’ve missed appointments because I forgot what day it was. Doctors’ offices are not at all understanding of this. It’s something on my list to advocate for.
So, dear reader, if you think late diagnosis means little to no difficulty in life, you would be dead wrong. If you think autistic adults have nothing to say about your child, you’d be wrong again. Just because I wasn’t a child that banged my head on the wall or spoke at a normal age does not mean I don’t have a life of my own severe challenges. I wish I could give you the happy ending for the story, but my story is hardly over and so far I’m not happy.
What I can tell you is this: Being diagnosed was the best thing to happen to me. I am no longer flying blind. I can finally create goals that make sense for me. I know you want to hear that Autism is just a part of your child or is something you can train out of them, but I can tell you my entire life is colored by this, for better and worse. It is who I am in the same sort of way that you know other intrinsic truths about yourself.