So, you want to learn more about autism? Here are a few things you need to know.
I am autistic. The world of autism is quite diverse, so my experience is just that, mine. And I am writing this for non-autistic people or, using the language of the autism community “neurotypicals” (NT) – my family, friends, and allies.
Clare Tyler is a student at the University of Rhode Island
As I sat down to edit this piece, I wondered if I had the right list of things. There are likely hundreds of things I would like people to know about autism, but then I thought: who is the audience? Who do I want to talk to in this piece? In trying to answer this, I thought of the neurotypicals (NTs) in my life like my family and my mentor who are looking to be allies but do not know a lot about the autistic experience, and in order to understand the basics, I thought they would need to know a few definitions:
What is Autism?
Autism is a developmental disorder characterized by different social communication, including difficulties with nonverbal communication; one or two interests that the autistic person engages with intensely (called “special interests”); stimming (repetitive soothing or stimulating motions); adherence to routines; and sometimes, sensory sensitivities (hyper-sensitivities or hypo-sensitivities).
What is Ableism?
Ableism is discrimination or harmful behavior towards disabled people. Someone who does harm towards disabled people or discriminates against disabled people can be called “ableist.” I include “harmful behavior” as sometimes responses that don’t directly target disabled people can be ableist. For example, the removing of mask mandates is ableist. Though it does not target disabled people explicitly, it harms us disproportionately to our able-bodied counterparts, making it ableist.
First..are two terms that I have come to learn are outdated and are considered ableist by the disability rights movement:
Why are the terms “Special Needs” or “Special Education” a problem?
It implies that our needs are special, but our needs are not special: they’re human needs.
Why are the terms “Asperger’s Syndrome” or “on the spectrum.” a problem?
We usually prefer “has autism” or “autistic.” Which one depends on if the person prefers identity first (“autistic”) or person first (“person with autism”) language. I, and I think most other disabled people, prefer identity first language. If you’re not sure which to use, ask the autistic person!
What is the “spoon theory” of energy?
In 2003, Christine Miserandino came up with the spoon theory to help describe what it was like to have a chronic illness/disability, in her case, lupus. Imagine having only a limited amount of energy units (or spoons) in a day, and you have to take away at least one spoon for each task you complete. It can be more depending on the task. If you are all out of spoons, you have no energy to do anything. If you’re low on spoons, you cannot do that much, and you can start the day low on spoons depending on how much sleep you got, what you did the day before or if you’re in a flare. I bring this up for autism because autistic burnout causes one to be low on spoons for days. For example, I got autistic burnout from last weekend (see my other piece The Role of “Special Interests” in Autism), so I had trouble doing work this week.
What is the neurodiversity movement?
The movement advocates for the acceptance of different neurotypes. Instead of encouraging a society with only neurotypical people (think abled person with no mental health or developmental disabilities), neurodiversity advocates for acceptance of neurodivergent people. A lot of conditions fall under the neurodivergent umbrella, and autism is one of them.
What is “masking” or “camouflaging?”
Given masking with Covid, I should explain. Autistic masking refers to when an autistic/neurodivergent person tries to act like a neurotypical (NT) to fit in. It costs a lot of spoons (energy) and causes a lot of anxiety as we’re hiding our true selves.
What is Applied Behavioral Analysis or ABA?
ABA is a technique of “training” autistic children to act more NT. It discourages natural behaviors such as stimming and rewards children for making eye contact when that can make us extremely uncomfortable. This encourages us to mask instead of being our true selves.
More things to know
Ok, now that we have the basics, here are a few autism specific things that I would like the NTs in my life to know:
We’re not all Rain Man
Some of us, like me, have what neuropsychologists call “splinter skills.” I have very good language based skills. My verbal IQ is really high, but my visual spatial skills are not nearly as good. Plus, math has always been my weakness, and yet I’m autistic. Not all autistic people are math/science geniuses. I’m going to say something controversial: I consider it to be a red flag if an NT “ally” points to Temple Grandin as an autism rights advocate for this reason. When I got diagnosed, I looked to her, and she propagated the view that autistic people “think in pictures.” I don’t, so I wondered whether psychologists got the diagnosis right. I have been through multiple assessments, and guess what? They did. I am autistic. Grandin’s position is harmful in that it paints autistic people with a broad brush, when in fact we are very diverse.
Listen to what we tell you EXACTLY
Listen to what we tell you exactly, because unlike neurotypical communication, we usually mean what we say. There’s nothing to decipher.
Communicate like we do.
Communicate like we do. Don’t rely on/expect us to know nonverbal communication. Say exactly what you mean. Don’t worry about hurting our feelings. Knowing what you think is way better than being confused.
Create an environment where we don’t have to “mask” or “camouflage.”
Create an environment where we can be our true selves. I stopped “masking” around someone after I told them my diagnosis and the energy/spoons it saves is remarkable.
Tell us why.
I always like to know the “why.” For example, at home, I’ve been asked to clean up not just my dishes, but clean other people’s dishes in the sink before dinner as well. I get why I should clean my dishes, but why other people’s dishes? I’m not trying to be difficult, but it seems like an unequal situation. So, a “why” is always helpful. In this case, the reason is my dad makes dinner and I don’t, so I should clean up the dishes to make things easier for him. Plus, now we both have an equal number of tasks. It seems petty to an NT, but not to me. When we ask “why?” we are actually confused, not trying to be difficult or petty. This goes back to there’s nothing to decipher in our communication usually.
Realize the positive aspects of autism.
I got praise for being so focused, and I was tempted to say, “Thanks. It’s the autism.” It’s true. Autism gives me hyperfocus, especially on my special interest. My routine also makes me organized.
Realize how beneficial special interests are.
Encourage them. They can be the key to a person’s happiness. My special interest has given me a lot of what makes me happy: something to focus on and have fun with, and it helps me whenever I feel socially isolated (again, see my piece The Role of “Special Interests” in Autism).
Recognize autistic burnout.
Recognize autistic burnout. Burnout can come from hyperfocus, being in an overwhelming environment or socializing too much, including masking. This happened to me this weekend at the history conference (see the same piece 🙂 ).
Allow us to not engage in social events.
Allow us to not engage in social events. This is especially prevalent at holidays/family gatherings. Social events can cause sensory overload or cause us to run out of spoons, so let us recharge without judgment, even if it seems rude to not attend the event/be with the rest of the family.
Accept our routines.
Accept our routines. I am very strict on bedtimes and eating times. When my dad let me eat earlier than everyone else at what was usually my normal time, my uncle thought I was being rude by eating before everyone else. Well, I have IBS and GERD, so if I eat too close to bedtime, I will have a flare. That happened last weekend. We ate late, and I had a stomach upset the next morning. Routines are there for a reason. Respect them.
Treat us like humans.
Treat us like humans. Yeah, it seems obvious I know, but it doesn’t always happen. If you see us as difficult, tell us. If there’s something about autism that you don’t understand, then ask. This is the difference between the Principal Investigator of a lab I used to work at and my current mentor. He is an NT who is open and willing to learn. That makes a huge difference, because I can tell him how to accommodate me and he’ll do it. This is why I don’t mask/camouflage anymore, whereas in my old lab, I was masking all the time (think of the spoons that costs). I think some NTs are afraid to ask questions on account of being rude. This goes back to my original advice: be direct. It’ll always come back to this. We like direct communication. Don’t worry about hurting our feelings. Knowing is better than not knowing.
Those are my main points, but there’s always more to learn! For NTs wanting to be better allies, I suggest that you follow people on disability Twitter. There are many good advocates on there who I have learned so much from, and listen to neurodivergent people, not other NTs. There is a saying in the disability rights movement: Nothing About Us Without Us. Involve us in decision making, do not have NTs speak for us. Happy Autism Acceptance Month!