Finn Gardiner is a community educator, researcher, advocate, and designer, currently working with the Lurie Institute for Disability Policy at Brandeis University and the Autistic Self Advocacy Network. In this article, he explains how executive functioning problems impact on his life and work, and shares some solutions that work for him.
Author: Finn Gardiner
I don’t actually like messes. It’s just that my executive functioning problems cause me to generate them to my own—and others’—consternation.
I consider my executive functioning difficulties one of the most disabling aspects of my being autistic. These struggles manifest themselves in a number of different ways, all of which are extremely frustrating. I’ve struggled with executive functioning since childhood, but I didn’t have the words to describe my experiences with it until I was an adult in my mid-twenties.
I have the hardest time with daily life tasks. For example, cleaning my room without direction or prompting is really difficult. It’s hard to turn the whole into parts, and once I’ve taken care of one part, I run out of energy to deal with the rest of the room. Trash bags accumulate in corners of my room because I keep forgetting to carry them down with me when I go downstairs. Plates, cups, and kitchen utensils lie on my dresser and bookshelves because I forget to put them in the dishwasher. It doesn’t help that I tend to perceive messes as part of the environment if they’ve been there too long.
Bills and paperwork lie on my bedroom floor. I’m terrible with paper. I pay all my bills electronically. It’s often the case that the only time my bedroom is spotless is when I’m ready to move out, and have the landlord do the final inspection so I can get my security deposit back. It’s easier for me to deal with common spaces in my apartment because my housemates and I chip in to cover a housekeeping service, but this is relatively recent. The housekeepers only deal with the kitchen, bathroom, dining room and living room anyway; I’m all on my own when it comes to my disaster area of a bedroom.
If I’m already drained and have exhausted my executive-functioning spoons for the day, it’s nearly impossible for me to cook a substantial dinner. I’ll end up ordering delivery instead. I like delivery every so often, but I feel like I’m spending more money on these orders than I’d like.
On top of that, I sometimes struggle with disordered binge-eating. I find it hard to start and stop activities as a general rule—I’ll get stuck in an activity and won’t be able to unstick myself for a while—and eating is no exception. I’m trying to be more mindful of my eating habits, but it’s taking quite a bit of time.
My executive functioning is questionable at any time of day, but it tends to be even worse before 10 AM. This is despite my using an alarm every morning to ensure that I get up on time. I’m usually awake when I’m supposed to be, but it’s difficult to “bring my systems online,” so to speak, until I’ve been awake for several hours. Morning classes and meetings are a wash for me much of the time, because I just don’t have the bandwidth to give my full attention, and it’s highly likely that I’ll be too tired to follow along as well as I’d like.
My executive functioning problems also affect my professional and academic life. I find it difficult to make plans for class- or work-related projects if I don’t already have a framework for them in my head. Once I have a system for doing something, tasks become much easier. I sometimes need prompting and check-ins to finish projects. I consider myself a reasonably independent worker, but I need an initial push to get into the groove. Check-ins while a project is underway can also help. I also benefit from collaborative to-do lists from supervisors and clients. Sometimes I find myself waiting until the deadline is perilously close, and then start a project in earnest because the deadline makes things feel more real.
Having executive functioning issues make me feel like a crappy adult because I do care about getting things done. It’s just that I don’t always have the bandwidth to develop a workable system that I can stick to. I worry constantly that people think I’m lazy or a procrastinator, because I frequently get stuck. I used to get screamed at constantly by my parents because of executive functioning difficulties, but I didn’t have the language to describe what I was going through, to help them understand.
I’ve been self-medicating with caffeine, for a while. I bought a case of 24 Red Bulls two weeks ago, and after I ran out, I bought extended-release caffeine pills to take instead. Caffeine helps me actually sit down and start things like work projects. It has its side-effects, but it’s more effective than doing nothing.
I think I would benefit from ADHD medication or something similar, but I worry that I’ll come across as meds-seeking. My psychiatrist wants me to go through a neuropsych evaluation, but the waiting lists for those exams are long, so that won’t help me right now. And right now is what’s frustrating me. Professionals may consider me to have “mild support needs,” but that doesn’t mean that I don’t have legitimate support needs.
The article first appeared in The Thinking Person's Guide to Autism.
Date added: 7 February 2018