I’ve been trying very hard this morning to break down the nebulous concept of “Executive Function” into something simple and easy to understand. But my executive function deficits keep getting in the way. And my ADHD symptoms keep throwing up flags. And my sensory issues keep distracting me, making it impossible to think. I don’t know where one stops and the other begins. And it isn’t that simple, anyway.
So pretty much all I can come up with in regards to “Executive Function” is: “stuff I have a really hard time with at work that makes it difficult for me to get my stuff done”. There. That’s what executive function is. Stuff I have a hard time with at work. And, life too. Stuff I have a hard time with in life.
I’ve been discussing this on Twitter and
@Suanta1 had some excellent advice for anyone who is trying to figure out exactly what “executive function” actually means: “Academics are always making up new words and concepts and changing the existing ones. Define EF for yourself first, then tell” So I responded, @Suanta1 Exec dysfunction= anything that interrupts my systematic internal processes, basically. The wrench in the works.
Yes, the wrench in the works.
Imagine a bicycle wheel smoothly spinning, around and around. Never hitting a bump or wobbling. Just perfectly spinning with that delicate tickety-tick sound. Now pick up a wrench and throw it at the wheel’s spokes. Everything stops, right? That’s the perfect description of how my executive dysfunctions affect me. My carefully crafted systematic work procedures are the smoothly spinning wheel. Anything that interrupts that- whether it is as a minor environmental issue, to a glaring interruption- is a wrench in my shiny silver spokes. All Stop. Start over again. I’d wager that the neurotypical person is able to easily brush themselves off from this momentary interruption and jump right back into their task with a smile on their face, and barely a missed step. This isn’t the case with executive dysfunction in autism.
And in undiagnosed autism? It is frequently mistaken for one being lazy, rude, defiant, defensive, argumentative, difficult, and well, just plain bad. All things that I personally can relate to being accused of being. I’m so tired of being called bad names. I have a lifetime of being called these words, without my situation being understood. I want to educate others about this often misunderstood aspect of autism. I want our voices and our needs to be understood.
If you want to read a series of excellent posts about executive function that go into great detail, with examples- then CLICK HERE. Otherwise, stay and visit with me for a while, as I describe how executive function deficits affect my life. I’m going to disregard the complex terminology surrounding this concept, because I have yet to meet a single person on the autism spectrum who is not completely overwhelmed by executive function. Seriously. That is why I am referring to it as “Stuff I have a really hard time with”. Because that’s what it is for me, in as simple terms as I can muster. A wrench in my works.
Why do I have a hard time with various stuff? Because there is an aspect of executive function called “cognitive flexibility” and basically, it could be described as an inability to flexibly adapt to change, or “resistance to change”- although I don’t like the word resistance. It begs one to wonder whether or not I have a choice in the matter. I don’t. That change be in the form of sounds, lights, smells, temperature, events, people- just about anything can take the form of the wrench that gets thrown into my smoothly spinning wheel of systematic processes. I’m going to focus on cognitive flexibility because it is the thing I have the most difficult time with. It has impacted my professional life in ways that make it impossible for me to function normally, or to fairly compete in my line of work, which is online indie cosmetic formulation.
This aspect of my executive dysfunction has resulted in my being labeled as many things professionally by customers and colleagues- most of them very negative. I’ve been accused of being a horrible person who doesn’t care about customer’s needs. I’ve been accused of providing bad customer service because I was unable to meet requests do a variety of special things for a customer, or I was able to do it but showed resistance that was interpreted as bitchiness. Customers have gotten upset when they forget to use a coupon code, and I couldn’t add the discount on manually. I’ve been called all sorts of negative words because I lack the ability to do custom changes to customer’s orders, such as add items on to an already-placed order, package the customer’s items in a special way, mix up a special custom blend of makeup for a customer, or ship several of a customer’s orders in one shipment to save them money. I’ve been criticized quite harshly and called greedy- for having a $10 order minimum in the online shop because receiving piles of orders for $1-2 would turn me into an incapable, melted pile of confused nothingness. This is just a few examples. There are hundreds more, and all of them have adversely impacted my ability to adequately do my work, and to fairly compete with other businesses.
While these things may seem like unusual requests, they are normal things in the indie world. These are actually things that my competitors do with complete ease. They are things that have come to be expected for an indie cosmetic shop to do, actually. And are seen as a way to measure “good customer service”. I couldn’t do these things, so I was negatively labeled. I still can’t do these things, so the business overall is seen as “not customer friendly”, or not caring about the customer’s needs. We live in a world deeply focused on customer service, and competition is high. When it comes to good customer service, an online shop’s ability to react quickly to all sorts of strange and unusual customer requests is a deciding factor. And I pretty much completely lack this ability, because I am Autistic. It’s so sad, because I put 200% of myself into my work. I go out of my way as far as I possibly can, but it’s in my own way. And people don’t see how hard I work, or how immensely concerned I am that customers are pleased with the products that I formulate. I either didn’t know how to show it, don’t interact directly with the customers out of fear/anxiety, or they don’t understand that all of the things I try to do to make up for my deficits are my way of showing how much I care. It’s a catch-22 that makes me cry, stress, and pull at my hair (literally) on a daily basis. Now, I am so scared of interacting with the customers and possibly offending them, that I rarely do it, if ever. I have someone who acts as a go-between. I very rarely interact. I did, last week- for the first time in years, and it gave me horrible anxiety and feelings of panic.
Being autistic gives me a long list of unique and wonderful creative capabilities and sensitivities, but it also becomes my Achille’s heel in a world that is strongly focused on “good customer service” in relation to a store’s ability to change direction for a customer on the head of a pin. I can’t do this. It throws a wrench into the works. It freezes me up, and I lose my rhythm and my forward momentum. I panic and I lose sight of my goals. I get caught up in the needed change, and I lose the ability to continue on my carefully chosen path, whatever it may be at that moment. I function best when I am able to carefully control my environment, systemize my work, quietly do my work without distractions, and not have to deal with “unknowns”. I will often wear noise-reducing headphones when I work, and I will only check for work-related email/facebook messages 1-2 times a day. I worry that certain requests, tasks or needs will throw a wrench in my works, basically. I need to maintain strong boundaries so that I am able to function optimally.
Making lists is a constant part of every day. I buy value packs of legal notepads and colorful post-it notes. I like to use highlighter pens and colored pens. I have tons of blank books that are filled with my lists. They are almost like diaries, in a way. The act of physically writing a task down and later crossing it off is cathartic for me. It helps me to actually see what I need to do, what I have already done, and what can be put off till later. I have tried using “to do” types of programs on my tablet, or online. These don’t work for me. The list has to be hand-written. The use of electronics for creating the list creates a barrier for me. It is one extra step that interferes with my process. So I keep to what I do best- and that is definitely making handwritten lists! When I don’t make lists, I feel out of control. They are grounding for me. I do believe that in some ways, they function as a “stim” for me. I return to my list many times in a single day, as it is comforting to me. Lists assist and strengthen my lack of cognitive flexibility and executive dysfunctions. It is in no way a cure for my quirks, but it definitely helps me to maintain a status-quo.
While the processes through which I work might seem rigid and myopic to some, they are the framework through which I have been able to be independent and support myself and my Son, despite being Autistic and having a lot of deficits. My deficits are actually invisible to most people- they would not be apparent unless you worked closely with me. I have spent years creating unique and systematic ways of working, that make it possible for me to require less supports.
I’ve been working on writing this blog post for about two weeks. I keep going back to it, over and over again- every morning. It’s been incredibly difficult to write, and I think that part of the reason why is that it’s shining a bright light on my deficits. I am often seen as a person who is high functioning. By “high functioning” I mean that others do not see my deficits and disabilities. They are relatively hidden, as I do an incredibly good job of hiding them. I’ve been doing it my entire life, trying to pass as normal, fit in, be part of something, or even just to earn my Mother’s love and approval. However, all of this energy expended towards “fitting in” is in and of itself, another wrench in my works. It’s distracting, draining and completely exhausting. It’s why I need to work alone, and not around people. It’s why I need to even more highly systemize my daily work processes while also drawing distinct boundaries between myself and the real world.
I can tell when my deficits are starting to focus towards an autistic or sensory meltdown. I start to feel “attacked” from all angles. I have the sensation of being made of stone, and everything in my environment, whether it is as tiny as a grain of pollen, as inconsequential as a minor criticism or as serious as my health problems, everything starts to feel like a chisel picking away at me. Even positive things become stimuli that wear away at me. Every email that gets forwarded to me to review, every question, every piece of mail on my porch, EVERYTHING- whether it is positive or negative or neutral– becomes a reactionary stimuli that is going against my grain. This is how autistic meltdowns related to my executive dysfunction begin. I have had these meltdowns for years in relation to my work, and everyone just figured I was crazy. bitch. nightmare. nut job. drama queen. train wreck. entertainment. constant provider of wank. Now that I am properly diagnosed as an autistic person, I have learned to avoid mostly all of the situations and circumstances which previously sent me tumbling. These meltdowns would usually occur publicly, such as on my blog or online forum, so you can imagine the shame, embarrassment and confusion that would accompany them.
If they discovered a “cure” for Autism, or a medicine that would magically suppress how it manifests in my life, I would never want it. My Autism is who I am, and while it might appear that I’ve had a great deal of heartbreak, difficulties and misunderstandings in my life because of it, I would never want to not be who I am. I’m proud of the person that I am. People who are still out there calling me cruel names and judging me do not know who I really am. They never will, because they don’t want to, or they simply aren’t capable of it. For over 40 years, I lived life as a misdiagnosed Autistic female. It was confusing as hell, and yes- if I could put one word out there to describe how I’ve felt for the majority of my life, that word is “MISUNDERSTOOD”.
Now that I know that I am an Autistic person, with ADHD, Generalized Anxiety Disorder, and Sensory Processing Disorder, I have a chance to change my life for the better. To move away from that word, “Misunderstood”- towards a future that is both accepting and inclusive of my neurology. Learning to be kind to myself, while being firm with others about what it is that I am capable of, and drawing bold lines in the sand to keep myself from crossing over into things that I’ve come to accept as things that I cannot, or should not do. Things that in the past, I did all the time, but at a great price.
Do you have a hard time understanding “Executive Function Deficits”? What are some of the things that throw a wrench in your works?