I get a lot of questions, both online and in person, about myself, autism, and neurodiversity in general. Because many of these questions are essentially the same, I figured it might be useful to make an FAQ addressing some of the most common. Note: This page is constantly being updated, so if you’d like me to add a question you feel should be here, just let me know!
❥ How does your autism affect you?
This is almost always the first question I’m asked in any interview, or even in casual settings, like when I disclose my diagnosis to a stranger at a party. First, I want to dissect the question itself, because it perfectly illustrates a central misunderstanding in the public perception of autism. “My autism” doesn’t “affect me” per se, because autism is not like depression, diabetes, or PTSD. Autism is not a singular trait or disorder, despite wearing that label in the DSM, and thus cannot be separated from a person. I usually respond, “How does being neurotypical affect you?” Autism isn’t something I “have” in the medical sense, because ‘it’ is a part of me that affects every aspect of my mind and body. As Jim Sinclair put it, “Autism is a way of being. It is not possible to separate the person from the autism.” A great description of autism I sometimes see on T-shirts that I feel captures this is, “It’s not a processing error, it’s a different operating system.” (It’s actually different hardware too, in many ways.)
❥ What are some of your symptoms?
I think this is the slightly more honest version of the first question, though it’s still not entirely accurate. But this gets to the heart of the real question, that is, “what makes you different from me?” First, I’d like to get the basics out of the way by saying I meet all the diagnostic criteria for ASD. Though the DSM is not actually a very useful description of what autism is like, as it’s written by allistic people without input from autistics, for the goal of providing support services. Yes, I have social problems, but honestly I feel that the idea that autism is a “social disorder” is putting the cart before the horse, and really missing the point. Autism is primarily a sensory and information processing difference, and the descriptions of autistics written by allistics are simply descriptions of the outward visible manifestations of these inner differences, prioritizing what allistics see as important.
So, what are my symptoms? What makes me different from an allistic person? For all practical purposes, this list is infinite, so I’ll just give a few examples:
– I have a manual transmission brain. This is the way I usually like to describe autism. Most things that neurotypicals do on autopilot, I have to do intentionally. Examples include but are not limited to: sensory processing; monitoring my face, body and emotions; interpreting the nonverbal cues of other people; and multitasking (including looking someone in the eyes while simultaneously listening to them).
– I am very hypersensitive to sensory input. I cannot filter sensory information, or prioritize which things are important, so in a way, I feel everything, all at once, at maximum strength. Sensory stress puts me into overload very easily, and overload is a literal sickness for me. I become achy, tired, shaky, nauseous, and start to overheat. I get a headache, and my jaw cramps up. If I look in the mirror when overloaded, I literally look like I have a fever; my eyes will be glassy, my face red, and so on. And when I’m tired, or stressed, what little filtering I can usually muster (manually) goes out the window. Food tastes different, sounds feel different, etc, the more stress I’m under. This kind of hypersensitivity can be a good or a bad thing, depending on context. It’s overwhelming when I have to shake someone’s hand, and downright unbearable when I’m riding a packed subway car home after a day at work. But it’s wonderful when I’m petting a cat, eating delicious food, or listening to music. I’ve also got a lot of synesthesia, which is fun.
– Similar to how I process sensory information, I process all information on an equal, point-by-point basis. The proper term for this would be a lack of central coherence (aka, I can only see the trees and don’t understand what a “forest” even is until someone explains). This plays into sensory processing in many ways. If I’m meeting someone at a restaurant, I prefer to know where they’re sitting before I walk in, because visually scanning the room to look for them takes me a lot longer than a typical person. Lack of central coherence also means I don’t “generalize” well, because every situation is unique to me. I believe this is why autistic people are good animal trainers. I’ve heard of owners who train their dog to do his “business” on command, only to find their dog suddenly refuses when they move to a city. This kind of thing is intuitive to me. They didn’t train their dog to go on command, they trained him to go on grass on command. A sidewalk is a unique situation.
– A lack of central coherence also causes problems with executive functioning, meaning that I have a hard time planning and executing tasks because, for me, even the most simple tasks are actually hundreds of tiny steps that must be identified and prioritized. This is a bad thing when I need to mail a package at the post office, find a new doctor, or tell a story to an impatient person (or write a concise FAQ!) But it’s a good thing when I need to learn and understand complex information, explain something to a child, or draw a realistic picture. Here’s a dense but very informative scientific paper about autistic perception that covers this pretty well. And here’s my blog post that touches on the topic.
– I am prone to perseveration in everything I do. I always have a song, sound, word, or phrase stuck in my head on a loop. Perseveration can lead to “hyperfocus”; when I start a task (especially if it is a task I enjoy) I will work until I’m finished (or exhausted) without stopping. So I’m very productive when working on small to medium projects (though not taking breaks is damaging and makes me sick afterwards), and all but incapable of even starting long term projects (the term for this is autistic inertia). I have specific routines that I stick to without deviation. I tend to eat the same foods, and wear the same clothes. Some of this comes from the natural inclination of autistic people to cope with the overwhelming world we live in by controlling as much of our environment as possible. But part of it is just perseveration. This also manifests in what allistics usually call “special interests” or “obsessive interests.” When I am interested in something, I become completely obsessed, no matter what it is. I will think about nothing but my obsession, and spend all my free time indulging in and pursuing the obsession for anywhere from an entire day to weeks, months, or years. Sometimes an obsession will be a TV show, and I’ll watch 5 years of a show within a week and then spend days or weeks reading about it. Sometimes an obsession will be a person, like when I start a new relationship I’ll use up a whole diary or more writing about them, and I struggle to socialize with friends because a new crush is all I can talk about. Perseveration is bad when I’m neglecting every important and essential aspect of my life to watch a TV show, but it can be a great thing when my obsessions are related to something like work, school, or learning a new skill. Autistic knowledge is often described as “narrow but deep.” We lack central coherence, so we absorb information by building a massive library of tiny pieces of trivia, until those libraries are so big that we are hardcore experts in our obsessions.
– I’m not intuitively or unconsciously capable of cognitive empathy. I have spent years learning about how to read nonverbal signals and about social skills (an example of one of my more practical obsessions), but I still can’t tell the difference between tired and sad if the context isn’t in-your-face obvious. I don’t read between the lines during in person interactions—I can read between the lines afterwards, when I go over everything in my head, but this is because I’ve learned how to. In the moment, I often say or do the wrong thing because I don’t understand the implications of what another person says or does. And I can’t process more than one thing at a time (especially multiple sensory things), so conversation is way too taxing for me to read between the lines while my brain is already so busy. Socializing takes a huge amount of cognitive multitasking, so it’s very difficult for autistic people and takes an enormous amount of energy and focus.
– I have an overabundance of emotional empathy. Sometimes this isn’t obvious, even to me, because of the lack of cognitive empathy and another autistic trait called alexithymia. But if I’m made aware of someone’s feelings, I empathize just as strongly, if not more so, than allistic people. And even if I’m not aware of others’ feelings at a conscious level, I still absorb and amplify the emotions around me. A great example of what this looks like is something that happened to me a long time ago, when an ex and I were living with three roommates: One evening, after I’d only just moved into their apartment, the household was setting up to play a card game in the kitchen. I was invited to join, though I decided to get myself something to eat before the game started. One of the roommates was also up and moving around the kitchen, putting her empty dinner dish in the sink. She announced to everyone that she wasn’t going to play, because she had homework due at midnight she needed to finish. As we moved around the kitchen together, I began feeling more and more anxious. I eventually realized it was because there was a big cloud of negative emotion around our roommate, next to me. I started to panic. Was she angry with me for taking her seat? (I had.) Was she upset that I was taking food from the communal dinner they had prepared? (I was.) Was I overstepping my bounds as a brand new roommate? (Maybe?) She went to her room and I sat back down at the table, upset and afraid. I wanted to leave, because I was too upset to enjoy being there. Then, she came back to the kitchen to get a snack and said, “Ugh, I’m so mad about this stupid paper. The one night we’re all having fun roomie bonding time and I have to miss it!” She wasn’t angry with me! I don’t have words to describe the relief I felt. This fact would probably have been obvious to an allistic person, considering the context. But I couldn’t separate myself from the moment to go over each point of the situation mindfully (as I would have needed to), because I was too overwhelmed by the intense and amplified emotions I was absorbing as a result of her anger.
There’s much more to “my” autism than this, but trying to describe everything would be impossible, impractical, and way too long for this already too long section.
❥ If autistic people lack empathy, then what’s the difference between an autistic and a sociopath? Are all autistics sociopaths?
Yes, I am frequently asked this question. To say I hear it often would be an understatement. Especially considering the media’s love affair with painting every mass murderer as autistic, it’s no surprise that allistic people think things like this when they hear that autistics “lack empathy.” I want to say first that some autistic people are also “sociopaths” (an outdated term, but a colloquially useful one), but this kind of personality is just comorbidity. Some autistic people have various comorbid diagnoses of things like schizophrenia, borderline personality disorder, dissociative identity disorder, depersonalization disorder, and so on, but these things are not inherent in autism. When a mass murderer has an autism diagnosis, or is “suspected” to be autistic, it’s about as relevant as pointing out that they were gay, colorblind, or a Sagittarius. Highlighting autism alongside a list of comorbidities is done unethically to make a person look more “crazy,” and only serves to further stigmatize mental illness. (it’s worth noting here that the mentally ill are far more likely to be victims of crime than the average person, and are far more likely to be victims than perpetrators—yes, even those with “scary” sounding diagnoses.)
Now that that’s out of the way… This question comes from a problem with our use of the word “empathy.” Empathy is not one, clearly definable trait. There are actually two types of empathy: Cognitive empathy (theory of mind), and affective empathy (emotional empathy). Cognitive empathy is the ability to understand another person’s mental state. Affective empathy is ability to respond emotionally to another person’s mental state. Autistics lack cognitive empathy, whereas “sociopaths” usually have a much higher capacity for cognitive empathy than neurotypical people. Sociopaths lack affective empathy, whereas autistics usually have normal to heightened capacity for affective empathy. Some autistic people also have impaired affective empathy, but this impairment is not accompanied by the “sociopathic” desire to manipulate or toy with others (with exceptions for comorbid personality disorders). If anything, autistics who lack affective empathy usually feel badly about this, and actively work on finding ways to improve their emotionally empathetic responses.
❥ What is “stimming”? Do only autistic people stim?
Short answer: It’s short for “self-stimulation,” and no! I’ve actually written an article about this. It can be found here.
❥ What’s the problem with the terms “high functioning” and “low functioning” for autism? Sure, I can see why they might be offensive, but aren’t they medically useful?
Nope. They aren’t as useful as you might think. I have an article about this too.
❥ How did you teach yourself things like body language and social skills?
I have an article about this here. Personally, I think that while autistics don’t pick up on this intuitively, we can still learn with enough study. Not that studying can make an autistic as good at this as an allistic, but it definitely can give you the ability to better understand group social dynamics, weird NT social rituals, and read intentions more easily. You can also learn how to make yourself look more or less approachable through body language. This stuff takes constant effort though, so it’s not like learning this makes it easy. It’s exhausting, and once you’re aware of it, you can’t go back up the rabbit hole. Beware.
❥ What’s the deal with self-diagnosis, and why do so many people self-diagnose with autism? How do you know they’re not just fakers who want to feel special?
I think it’s awful how stigmatized self-diagnosis is for something like autism. Especially for adult women who often don’t “look” autistic to professionals who are used to thinking of autism as the kind they see in little boys. I have an article about this topic too!
❥ How can autistic people be “proud” of something that’s a disorder! Why would anyone be against a cure? Isn’t this a disease? How can you expect parents to just “accept” their children as they are when they’re disabled?
I get that this doesn’t make much sense to most allistics. It’s easier said than done to support and accept autistics when you’re a parent who watches your child struggle and hurt every day. But yep, you guessed it, I have an article about this too.
❥ I think I might be autistic. What should I do? How do I know for sure?
Awesome! I’m proud of you for exploring your identity and being so proactive in identifying your problems and seeking solutions. If you are autistic, welcome to the family. If you’re not, don’t worry. Being “wrong” isn’t something to be ashamed of; the self-diagnosis journey is usually one of bouncing to and fro in the DSM, and there’s so much overlap of diagnostic traits that it can be easy to miss the mark a little. Neurodiversity is basically a series of overlapping Venn diagrams, so it can be hard to draw the line, even for specialists!
Here’s a great list of online self-assessment tools.
Here’s a funny but accurate list of autistic traits.
Here’s a mini guide to the diagnostic process.
And I recommend these books for more insight:
– I think I Might Be Autistic, by Cynthia Kim
– The Journal of Best Practices, by David Finch
– The Complete Guide to Asperger’s Syndrome, by Tony Attwood
– Aspergirls, by Rudy Simone
– Congratulations! It’s Asperger Syndrome, by Jen Birch
– Beyond the Wall, by Stephen Shore
❥ Why do so many autistic people hate Autism Speaks?
Wikipedia actually has an entire page compiling “controversy links” on this topic! Read it here.