8 Things Autistic People Want You to Understand
Communication comes in many forms
We often hear that x percent of communication is nonverbal (depending on who you talk to x ranges from 70-90%), yet when it comes to autistic people it always seems that this idea is thrown out the window. When an autistic person can’t speak verbally, it is assumed that the person cannot communicate. There are so many autistic people who have been labeled as non-communicative when really the problem is that others just aren’t listening. Communication can come in the form of AAC (Augmentative and Alternative Communication) such as apps that translate typed words into spoken speech or PECS communication or even something as simple as a pen and paper. However, communication can also be behavior. An autistic person pulling away and resisting doing something is a pretty clear ‘no’, yet so many people ignore this communication. If you have a non-speaking autistic person in your life, understand that they are still communicating with you, just not through spoken words. Take the time to truly listen to them.
A lack of verbal speech does not equal a lack of intelligence
Similarly to the previous point, it is often assumed that a lack of verbal speech means that a person is unintelligent. In a society that equivocates how well someone can speak with their level of intelligence, those who are unable to speak are assumed to have an intellectual disability. However, time and time again, non-speaking autistic people, when finally granted access to AAC, show that they are in fact very intelligent and can communicate eloquently when given the correct tools. Far too often, parents and caregivers assume that if an autistic person cannot speak, then they cannot understand what is being said about them and proceed to say terrible things about the autistic person right in front of them. Yet, we see again and again the harm this does to the autistic people who hear all of this but cannot voice their opposition. To read the writings of non-speaking autistic people and learn more about their experiences, check out Emma’s Hope Book, Nonspeaking Autistic Speaking, or Carly’s Voice. Understand that verbal speech does not equate to intelligence.
Our abilities vary greatly from day to day
Some days I can speak endlessly. Other days, my words are fragmented or nonexistent. Some days I can do all the things I need to in order to care for myself. Other days, a shower is a monumental task. Some days, I can pass as neurotypical. Other days, I am obviously autistic. My autistic traits vary intensely from one day to the next and change over time. While I have always been and will always be autistic, the autistic traits that I display vary over time. This can be hard for non-autistic people to understand. While non-autistics experience some variance in ability from day to day, it is typically not nearly as intense as the variance that autistic people experience. For many autistic people, our abilities can change rapidly and something we could do yesterday we may not be able to do today. This isn’t because we are lying or trying to get out of doing things but rather due to fluctuating stress and sensory input levels. Our brains don’t filter our input in the same ways that non-autistic brains do so our brains have to process so much more input. This leaves less resources with which to accomplish daily tasks. On days that have been less intense with regards to sensory input or stress, we are able to accomplish more, however, on days that sensory input is overwhelming or we are stressed, our abilities may diminish. Please understand that both experiences are valid and have understanding for the autistic people in your life if they are not able to do something you’ve seen them do before.
If you’ve met one autistic person, you’ve met one autistic person
This is a common phrase among the autistic community, and for good reason. Just like non-autistic people, autistic people are a vastly varied group. No two autistic people are exactly the same just as no two non-autistic people are the same. Yet, for some reason, many non-autistic people assume that because they know someone who is autistic, be it a sibling, child, neighbor, cousin friend, etc., that they are experts on what autism looks like and that they can decide who is and isn’t autistic based off the autistic person that they know. So many autistic people face comments like “But you can’t be autistic. I have an autistic [relative/friend/neighbor] and you’re nothing like them.” Not only are these comments hurtful, but they are rooted in ignorant assumption. While autistic people are more likely to have things in common with other autistic people than with non-autistic people, autistic people are still unique individuals with our own unique mixes of autistic traits. Understand that knowing one autistic person means just that, that you know one presentation of autism out of the myriad of ways that autism can present.
What you call laziness is probably executive dysfunction
I could write a whole post on the subject of executive dysfunction (and in fact I have) as the subject is so broad, however, we’ll cover the basics of what autistic people need you to understand. Executive dysfunction is when a person has difficulty with a set of brain functions known as the executive functions and is common in autistic people as well as people with ADHD, schizophrenia, and other mental illnesses. Executive function is a term that includes a wide range of brain functions including abstract thinking, attention, cognitive flexibility, decision making, emotional regulation, initiating and inhibiting context-specific behavior, initiation of action, monitoring internal and external stimuli, moral reasoning, planning, problem solving, rule acquisition, selecting relevant sensory information, self-control, sequencing, and working memory. Any one or more of these functions may be impaired in an autistic person and, as mentioned in point three, the affected functions may vary from day to day or over time. As such, autistic people can have difficulty with everything from starting a task to completing a task, emotional regulation to socially appropriate behavior, planning for the future to applying consequences from past actions. There are so many ways that executive dysfunction can affect a person. Please understand that many of the people you label as lazy or undisciplined often have executive dysfunction and are genuinely struggling.
Our sensory systems work differently than yours
For most people, sensory input is not something they have to think about. Their brains are able to filter out unnecessary input and focus on what’s important at the moment. However, for many autistic people, the brain function that controls what sensory input makes it through doesn’t work so well so everything comes through at equal importance. This can make the world a very overwhelming place. Further, our senses tend to be more or less sensitive than the average person. For instance, the lighting in office buildings typically doesn’t cause issues for most people, but for autistic people whose vision is more sensitive, the lighting may be far too harsh and cause pain or sensory overload. Other autistic people are less sensitive and may need extra sensory input in order to feel grounded. Further, an autistic person can be hypersensitive in some senses but hyposensitive in others. For instance, my sight, hearing, and sense of touch are more sensitive than the average person, but my senses of taste, smell, and interoception (the sense of what is happening inside your body) are less sensitive than average. When an autistic person receives too much sensory input or bad sensory input in a sense they are hypersensitive in, it can lead to sensory overload which is when the brain becomes so overloaded by the input that it can no longer function as it usually does. Sensory overload often feels like everything is too much. Lights seem too bright. Sounds are too loud. The world is painful and rough and the person often grows very irritable with everything. Please have understanding that our senses work differently than yours and that if we say something hurts us, it hurts us, even if it doesn’t hurt you.
Hand flapping and other stims are important
Far too often, autistic children are discouraged from or forced to stop stimming. For those who don’t know, stimming is the term that autistic people use to describe the repetitive, sensory stimulating motions we often make such as hand flapping, rocking, bouncing, or foot tapping. For autistic people, these movements serve a purpose. Sometimes stimming is for emotional regulation. Sometimes it’s for sensory regulation. Other times it’s a form of expression like smiling or laughing. Whatever the purpose, stimming is important for autistic people. When we are prevented from stimming, it can have negative effects on our mental well-being. Stimming can help us avoid meltdowns, calm ourselves, express our emotions when they are too strong, and so much more. Stimming is such a vital part of the autistic experience for many autistic people. Understand this importance and don’t try to stop autistic people from stimming.
We don’t want a cure. We want acceptance and accommodation.
April is known to most as Autism Awareness Month which inevitably means that talk of curing autism has been everywhere. People have participated in walks and other events to raise money in search of a cure for autism, yet this is not the goal of most autistic people. First, a cure in the way that many people think of it will never be possible. Autism is something that people are born with. It is an innate difference in brain structure. In reality, the search for a cure is the search for the gene(s) that cause autism. The search for these genes is ongoing in the hopes that one day parents will be able to get prenatal testing for autism at which point they could abort their child to prevent autism. This isn’t a cure; it’s eugenics. The search for a cure, led mainly by Autism Speaks (which is problematic for many other reasons as well as can be read here), is in reality a search for ways to eliminate autistic people from existence. However, autistic people don’t want to be wiped from existence. Instead, we want to be accepted and accommodated so that we can live better lives.
So many of the things that parents reference when they say they want a cure aren’t even actually autism. For instance, epilepsy and bowel problems are often referenced as reasons for a cure, yet these are separate issues that happen to occur more in autistic people. Autistic people would love a cure for these issues, but these things are not inherently a part of autism and could be fixed as separate issues. Further, the aspects of autism that typically cause difficulties for autistic people such as social difficulties and sensory processing issues could be alleviated by understanding, acceptance, and accommodations from non-autistic people.
If you really want to help autistic people, work with us. Help to normalize stimming so that we can regulate ourselves without fearing repercussions. Accept alternate forms of communication so that those of us who struggle with verbal speech can communicate with those around us. Accept social differences and allow autistic people to interact in ways that are natural for us. Accept autism as an alternate way of being rather than a burden, tragedy, or epidemic. Listen to the voices of autistic people rather than the parents of autistic people or other non-autistic people. Respect our differences. With accommodation, acceptance, and understanding, the lives of autistic people would improve drastically.
These are just eight things that autistic people want you to understand. There is so much more that we want you to understand as well, but this piece is already long enough. However, by listening to the voices of autistic people and practicing acceptance, you will learn more of what we need you to understand. This April, join us in celebrating Autism Acceptance Month by participating in Red Instead. Autistic people are speaking, are you listening?