Sometimes when I need to do the laundry, I can’t figure it out. I see a basketful of dirty clothes and envision them all in a pile, clean and warm, but I can’t quite remember how I did it last time. I can’t make it connect in my head: pick up the basket, carry it across the hall to the laundry room, make sure there isn’t anything in the pockets of my jeans, check that all of the t-shirts and socks are the right way out, put a laundry pod in, and start it up. That’s how it usually goes, and if I’m not tired it’s not hard. But then the little stall in my brain happens and I have to figure it out all over again. Sometimes, I can’t manage it, and I end up sitting there on my bed and staring at the clothes in my basket, willing them to do what I want them to do. This doesn’t happen very often anymore; I have developed a certain paranoia about losing any of my clothes in the confusion that always seems to ensue whenever anyone else does the laundry, so I don’t trust the rest of my family to do mine. I even have my own basket. Usually they travel around, but this one stays in my room in my closet.
I am decidedly less certain about cleaning other things, like the kitchen. I see a mess and am unsure about how to make it… not that. It’s not that I’ve never cleaned a kitchen before. I’ve cleaned it plenty of times. Done the dishes, organized the fridge. Organizing is often something I actually enjoy doing, but the fridge presents the unpleasantness of the occasional, unidentifiable, sticky substance stuck to the bottom of a milk carton or a jar of mayo. I can handle sticky, but not a veritable pile of plates, bowls, forks, etc. It looks like a smelly Mount Everest to me and it usually takes some psyching up and mental planning to even start doing them.
To give you a picture: imagine my brain is a set of cogs. The previously mentioned “sometimes” is the gum that gets stuck in there and blocks them up. It feels like a heavy mist has settled over my thoughts, and doing something that usually comes fairly easily to me, like writing, is suddenly very, very hard. Four-sentences-in-four-hours hard. Things just don’t work like they’re supposed to, and it can be incredibly frustrating.
I experience this difficulty- called executive dysfunction- because I am autistic. A lot of people I encounter have little to no idea of what autism is, so here’s a definition: autism is a neurodevelopmental disorder, characterized by differences in sensory processing, stimming, differences in communication, executive dysfunction, and special interests (a.l. what is autism). In other words, an autistic person experiences the world differently than an allistic (non-autistic) person: their brain processes sights and sounds much differently. Some experiences like walking into a Hobby Lobby might be headache-inducing because of the lights, or sitting in a loud classroom might be difficult because they can’t concentrate on one sound in particular; instead it comes across as one, single sound. This person would most often stim to handle this intense sensory input. Stimming is short for self-stimulation, and helps the person stimming to focus on the thing they need to focus on, like a teacher talking or doing some busy work on their own in class. An autistic person handles communication differently, as well. Because autistic people either occasionally or often have difficulty reading facial expressions, body language, and tone, they can miss social cues and come off as rude or uncaring or inappropriate. This is, for the autistic person, confusing, because sometimes people will be angry with them for something they didn’t notice they did or were doing. They might need to be told that they have been talking almost without breathing for a few minutes about a particular topic. One very recognizable trait of autism is special interests, a specific topic or thing that the autistic person is seemingly endlessly interested in and passionate about. These can last from a few weeks to a lifetime (a.l. what is autism 7). That just leaves executive dysfunction, which I have already explained in some terms, but here is a definition. Executive dysfunction is the flip side of executive function, “…what allows us to go from thinking about or wanting to do something to actually doing it…” (a.l. what is autism 6). Therefore, executive dysfunction is not being able to perform this function without help or a lot of energy.
Because so many autistic people show these characteristics differently, autism is commonly applied to a spectrum, hence the name Autism Spectrum Disorder, or ASD. Previously, these symptoms were separated into two subcategories: Autism Disorder and Asperger’s Syndrome, under the subcategory of “Pervasive Developmental Disorders.”(NIH 2). “However, this separation has changed. The latest edition of the manual from the American Psychiatric Association, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), does not highlight subcategories of a larger disorder. The manual includes the range of characteristics and severity within one category. People whose symptoms were previously diagnosed as Asperger’s syndrome or Autistic Disorder are now included as part of the category called Autism Spectrum Disorder (ASD)” (NIH 2). So, when a person says they are on the autism spectrum, they refer to their ASD and the characteristics of that disorder that are unique to them that affect how they experience the world.
Autistic people are a minority compared to neurotypical (normal) people (Ask an Autistic #16). An analyzation of fifty-four studies with 13,784,284 participants overall found that 53,712 had ASD. The study also showed that biosex females (it’s currently inaccurate to say “girls” because a lot of people whose biological sex is female do not identify as girls, so I’m using the term biosex to be incredibly specific) “who meet criteria for ASD are at disproportionate risk of not receiving a clinical diagnosis” (m-t-f ratio).
Autistic people are considered to be disabled by doctors and other medical professionals because they are trained to follow the medical model of disability (Ask an Autistic #16). This means that their goal is basically to cure people, to make them better, “and that’s great if you’re sick, if you have an illness or a disease, but what if you are disabled? What if you have a developmental disability like autism?” (Ask an Autistic #16). Sometimes the goal to make everyone the same is unrealistic. Damaging, even. “…we like who we are, as we are, even if it’s tough sometimes, and we wouldn’t want to be cured” (Ask an Autistic #16). However, it’s important to remember that a lot of autistic people consider themselves to be disabled because of the social model of disability. The social model of disability is a response to the medical model of disability coined in the 70’s by disability rights activists in the UK (Ask an Autistic #16). It firstly states that “while a person may have impairments… it is not the impairment that disables them, it is society” (Ask an Autistic #16). Being excluded and not accommodated for makes us disabled. Secondly, it states that disabled people should be the focus of the discussion about disability and illness. “…the idea shouldn’t be trying to make everybody as normal and non-disabled as possible, asserting in the process that any difference from the norm is wrong and bad, but that each person should be treated as an individual, and their impairments as well as their strengths should be taken into account when they are being accommodated for.” Autistic people should not be treated as if they are wrong and need to be fixed, and we should have a huge voice in the discussion, especially when the decisions made affect us so intimately.
This idea should be important to anyone who is close to or interacts with autistic people, especially parents. We are disabled because we live in a society that wants us to be uniform, and forgets that we are individual. The best way to live in this society is to learn how to do the hard things we are expected to do, be accommodated for, and to strive for acceptance. Acceptance comes with education. Learn about autistic people and help us to carve a foothold in a world that wants us gone.
“Autism Spectrum Disorder.” National Institute of Mental Health, October 2016, www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml#part_145442.
Rachel Loomes DClinPsy, LauraHullMSc, William Polmear Locke, and MandyDClinPsy, PhD. “What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis.” ScienceDirect, vol. 56, iss. 6, June 2017, pp. 466-474. www.sciencedirect.com/science/article/pii/S0890856717301521.
Sanders, Thomas. “Autism Acceptance: I Can’t Believe I NEVER KNEW… | Thomas Sanders.” Youtube, 22 April 2017, www.youtube.com/watch?v=vE0R-Gw_GEA&vl=en.
Schaber, Amythest. “Ask an Autistic #16 – Is Autism a Disability?” Youtube, 11 July 2014, www.youtube.com/watch?v=EKE3PT2_ynU.
“What is autism?” tumblr, 3 November, autisticliving.tumblr.com/post/152683908481/what-is-autism.