A while ago, I made a list of autistic traits based on the ICD-11 criteria, to help people better understand it. To help me better understand myself, I used that list to write down examples of the way these traits express themselves in me.

Social

• I tend to miss sarcasm. Usually it takes someone repeating the same statement multiple times and exaggerating in content and tone for me to understand.
• When taking the RME (Reading the mind in the eye) test, I score an average result – but it takes me about ten times as long than it's supposed to and often feels like guesswork
• I don't pick up well on implied communication. This can cause anxiety because I feel like I'm missing something but I don't know what it is (or it it's even true)
• I take a while to process language, especially if there is some implied meaning I have to figure out. This can cause me to respond too late or not at all
• I've noticed that whenever I think back to a past conversation, I remember how the walls or the floor looked like, but less about the person I was talking to. Apparently I don't look at them a whole lot.
• I often sit or stand in positions that are interpreted as nonverbal communication (often rejection) by some, but it's just how I'm comfortable.
• I've trained myself out of some positions (e.g. crossing my arms) and sometimes consciously mimic other people's body language to avoid miscommunication and appear friendly
• Usually when I laugh, it's because I find something funny, but laughter and smiling are also common reactions for me when I don't know how else to react or when I feel unsure. I have laughed after being told that someone died, and as a child, I remember working hard to suppress laughter when a teacher who scared me was yelling at the class.
• I've been told to “be more enthusiastic” or otherwise show more emotion
• I often accidentally end conversations because I don't know how to continue them. I've spent weeks answering a coworker's “How are you”s with “good” before it finally dawned on me that I'm supposed to ask the question back.
• I don't instinctively know what idioms mean, even when I can tell it's an idiom
• People always seem to be looking for hidden meanings in what I say, which makes it hard to get across what I actually mean
• At the same time, people don't understand when I'm being sarcastic or joking and always think I'm serious. They're as bad (or worse) at understanding my sarcasm as I am at understanding theirs
• It can be very hard to keep a conversation going. In groups, I often space out or just listen until they mention something that captures my interest
• In high school, my favorite form of conversation was sitting quietly while doing my sudokus or drawing and listening to the other people's conversations, then joining them when it got interesting, all while still looking at my paper
• I have a hard time finding out when it's my turn to talk. In the past, this has led to me not talking a lot in conversations, now it mainly leads to me interrupting others
• I often don't know how to start a conversation or interaction. This can be as simple as wishing a coworker a happy birthday – I can spend the whole day about to say it, but can never quite catch the right moment, the right words, and all the other things that need to be “right” that I don't even know about
• I need to mentally prepare myself for conversations. When someone starts talking to me unexpectedly, I may be unable to form words as I process what is happening and how to react
• I script what I'm about to say to start a conversation, and practice it multiple times in my head. Sometimes, this practice alone can take its toll on my social batteries.
• I don't think I make a difference between who I talk to, like how close we are or what the hierarchy between us is. I'm bad at estimating these things anyway.
• I tend to have a hard time knowing which observations can be extrapolated to which contexts.
  • In high school, I remember watching a girl laying her head on a boy's shoulder, which made me save the rule “Girls are supposed to lean against a boy when sitting next to one they know” to my inner social guidebook. Weeks later I learned that they were dating and realized that this might affect the social dynamics (and behavior) between them. Luckily I didn't socialize enough to embarass myself too often with generalizations like these...
• I think I'm good at imagining what (neurotypical) people might be feeling based on the context and their reaction, but this is intellect, not instinct. I was 18 and watching a 5-year old flap his hands when I first understood what people mean by “instinctively” relating to and knowing what people feel
• Even when I do know (or take an educated guess at) what people are feeling, I don't always react the “right” way. People often say to treat others the way you want to be treated, which has led to confusion when I ignored a crying classmate and left them alone (as I would've wanted others to do with me)
• After this, I've understood that it may be more socially appropriate to try to comfort the person, but since I don't know how, I still often resort to pretending I didn't see them
• Similarly, I don't know how to show excitement for someone. Flashback to when a friend, cheering, told me she got an A on her presentation and I gave her a thumbs up from the other end of the classroom while eating my bread. Did I know that I should react differently? Yes, absolutely. My brain was working hard in that moment to find out what to do. And failed.
• When people tell me something, my instinctive reaction is to show them I can relate by telling them a similar experience I've had. Apparently this can be seen as egocentric, or at least that's what the internet tells me
• Many of my friendships in early childhood were “built-in” (i.e. kids I saw everyday anyway), later on they were one-sided friendships initiated by well-meaning girls who wanted to make sure I had someone to hang out with.
• I didn't have huge issues making friends until I was around 8. That's when I started withdrawing more and more
• I don't know where the line is between acquaintances and friends, or how to cross that line
• Much (all) of my social skill set relies on observation. I can observe casual or polite interactions and mimic them. I can look up tips for job interviews on the internet and follow them. But you don't get a sneak peak into other people's close relationships (e.g. friendships) so I have no idea how to act in those. Whenever I sense an interaction becoming less casual (which, to be fair, doesn't happen that often) I can feel it slipping from my grasp, like I'm entering uncharted territory.

Repetitive Behavior

• Some change I just can't cope with, specifically when something changes about a thing that comforts me or that I like.
  • When they moved my bed in our vacation home, my mood was depressed for months, and I still hadn't quite recovered one year later, when they finally turned it back.
  • I was a shy kid. But I wasn't shy to the nail artist who did my mom's nails when I was a preteen. I hated her for changing something about my mom and I let her feel it. This, too, I was still processing months later (All this despite having quite strong values associated with bodily autonomy. I was aware that my thoughts and actions contradicted my values)
  • I could name more examples. Like the time my favorite rollercoaster replaced the song played at the beginning with a video. Or when the amusement park restaurant changed its furniture. The pattern is always the same: Something familiar and comforting changes in one aspect and I fall apart.
• Some routines and patterns are just comforting, in a way. Imagine smelling something that instantly reminds you of a memory you associate with the smell (e.g. the smell of lemon cake reminding you of sitting with your family and laughing). That's what these patterns are for me. I listen to a song and am instantly and strongly reminded of the place I was at last time I listened to it. I sit in a restaurant and feel like I can already smell the food I ate there last time. I play a game and feel like something is missing without the audiobook I listened to last time. Doing those same things again in the same combination just tickles all the right brain cells.
• I need predictability and, for things that fall outside of my routine, preparation time. Doing anything on short notice can be extremely stressful.
• Aside from distress, I simply need a certain amount of routine to function. I like vacation (as long as it's spent in a familiar environment, that is) but vacation also often means needing support with very basic skills – like someone reminding me to change my underwear.
• Whenever something interrupts my routine (this could be my mother coming home earlier or later than expected, for example) I'm like a computer that has to reboot 10 times and then instantly gets stuck because a change in routine usually involves a lot of decision-making and re-planning, and that's something I have trouble with anyway.
• When playing games, I seem to pay more attention to the rules than others do, which confuses me. I ask for clarification, but people usually take that to mean that I think I'm being treated unfairly (and then annoyingly insisting on small and meaningless things). In reality, I'm just confused. I don't get the fun in a game that just arbitrarily changes its rules.
  • A few years ago, we played Categories at school. One category was “school”, and for the letter “K”, I went with “kindergarten”. I didn't get a point because “we're doing British English and kindergarten isn't part of the British school system”. ok i guess. I thought such a rule should've been specified before, but whatever. The other students wanted to keep playing and I wasn't going to be the annoying person that kept them from it. Yet. But then another student came up with a solution that my teacher first said didn't make sense (i think it was “brown folder” for “B”) but then gave a point for anyway. I asked for clarification (why is “kindergarten” against the rules but “brown folder” is not) but my teacher made no attempt to answer what should've been a simple question, instead basically telling me to just accept it and move on. At the end, she told me I could write down half a point, which I reluctantly agreed to (because, again, I didn't wanna be the one ruining the game for the rest of the class), but inside I was angry and still confused – giving half points was even more illogical than the situation we started with.
• I like creating lists and categorize things related to topics I like. Tree-diagram categorizations are especially great
• I stim.
  • I stim when I'm excited (hand flapping, rocking, jumping) and it makes the hapliness even bigger, when I'm stressed (rocking) and it comforts me, when I'm in thought (hand-wringing, hair-twirling, pacing) and it helps me focus
  • Some of my stims are self-injurious, mainly skin-picking. Stim toys and another person (my mother) can help in redirecting them, but usually only for a short while.
  • I stim to cope with uncomfortable sensations. Brushing my teeth is usually accompanied by sideways rocking, finger twisting, and hand-flapping. Re-learning how to stim was a key skill in getting myself to brush my teeth more or less regularly.
  • I stim to cope with sensory hyposensitivity, e.g. moving or putting pressure on my legs to feel them. This often involves sitting in positions or places others would find uncomfortable, e.g. I always remove seat cushions before sitting on a chair, at home I sometimes sit holding my left leg in my arm, or lie on the hard floor.
  • I stim because it's fun and comfortable. Touching soft and cold fabrics. Being on a swing and feeling the air move. Closing my eyes and look what the light does. Moving my hands through water.
    I stim myself to sleep.
  • I still toe-walk as an adult and have done so since I could walk. I often have my hands up in a “raptor hands” position
• Some sensory information is a lot stronger for me than it is for others
  • Fabrics can hurt. I don't wear jeans. It's difficult to find clothes I'm comfortable in at the store. Some clothes can be downright painful. I love buying pyjamas because they're the only clothing item of which I'm likely to find something I actually like
  • I always use the blue-light filter on my phone or I get a headache. I'm faster to blink or close my eyes at bright lights than others are. I sleep best in a pitch-black room.
  • I have difficulty putting things in the dishwasher abd emptying it, among other reasons because of the smell, the noise of porcelain against porcelain, and the feel of some materials (freshly cleaned glass, ew) against my skin.
  • Sometimes I feel overwhelmed and irritable for no apparent reason. I've learned that wearing ear defenders can reduce or delay this feeling, making me assume that it's likely senaory overload
• Some sensory information is a lot less intense to me than to others
  • I don't seem to get strong toothaches, despite severe problems with cavities
  • Sometimes I can't tell where my body parts are in space. I might lie in bed and thing my feet are both to the right side right next to each other, but then I move them and notice one of my feet is actually further away
• Sometimes I can't identify a stimulus
  • I often can't tell if something smells good or bad before knowing what it is
  • I often can't distinguish between hunger, fullness, thirst, constipation excitement, anxiety and other sensations. I need context to know.
• People perceive my interests as obsessive or more intense than theirs. I like to spend all of my free time on 1-2 interests, and they're always more important to me than social interaction. I get very excited when someone mentions my interests in a context I don't expect them to. Their interests may need to be “obsessive” before they would spend so much time on them, but for me it's (usually) just something I like. Every once in a while I might get an interest that is actually very strong and it's the best feeling in the world.

Other

• I constantly bump into things. If you want me to walk in a straight line, draw one on the floor I guess
• “Intellectual” tasks (academics, studying, pattern recognition) are marginally easier for me to learn than motor skills or social skills (see all of the above), but the most difficult skills are practical ones. I've been told “But you're so smart” by people who didn't believe me that I didn't understand a thing that was easy for them.

And why it isn't dysfunctional

Image Credit: Steve Asbell

#neurodiversity #autism #actuallyautistic

When I was 18, I was working in a pre-school. It was a requirement for getting into the school where I ended up studying social pedagogy. One day, I was reading childrens' developmental reports, including the one of a 2-and-a-half-year-old girl diagnosed with GDD -a global developmental delay. One phrase stuck out to me: “dysfunctional play”.

Now, I had seen this kid – let's call her C – play before. She liked walking the stairs up and down with help (fairly typical for a child currently learning to walk stairs). In the morning, she often sat on my lap with a picture book, pointing at the pictures to prompt me to say the corresponding words. She wasn't interested in the stories, but still – doesn't seem odd for a child currently learning her first words, right?

But she also liked to play by throwing things. Or by turning the wheels on a toy car. I don't remember the details of C's play, but I do remember the conversation that followed my reading of the reports. “What about her play is 'dysfunctional'?”, I wanted to know. “The function of play is fun, right? If she's having fun, it's functional.” The teacher I was talking to happened to agree with me, but the ones who wrote the report clearly didn't. And I still had no idea why.

Since then, I've been learning more about child development and education, and I'm beginning to understand.

---

Maybe if I had had this conversation with someone else, they would've told me my initial premise was wrong: play isn't only about fun. At least not to educators. Play may be defined as a purposeless (not pointless) activity involving fun and relaxation. But it comes with some pretty neat side effects: Learning.

Our school system has led us to believe that you can't possibly enjoy something and learn at the same time. But the opposite is true: Nothing teaches children more than free play. Playing is essential, not just for relaxation, but for learning cognitive, social, emotional, and all kinds of other skills.

Imaginative play teaches empathy and helps children to process their experiences. Losing a board game teaches frustration tolerance. Drawing teaches fine motor skills. Picture books are used to teach about all kinds of topics – and they're a stepping stone to learning how to read.

So, whenever someone calls a child's play “dysfunctional”, what they're saying is “This child isn't playing the way I'm used to, and I'm worried they're not learning the skills they need”

It's a reasonable enough concern, but why are we so quick to assume that atypical play doesn't teach any skills?

---

Being told that free play is the number #1 way of learning should be comforting. Parents want the best for their children, and that includes a good education. And many are worried that they are not doing enough – maybe their kids should visit more classes, play another instrument, maybe learn a third language? And, in my experience, people in early childhood education (primary and secondary might need another second...) will usually say the same thing: let them play. Answer their questions. Maybe provide them with materials and experiences that match their current interests.

No child learns the same thing at the same time or in the same way – so we don't know when the right time to teach a child a certain skill is. But here's the thing: They do. The best time for children to learn a skill is when they're interested in it, and they will show you that through their questions and their play. It's not always conscious (look up “play schema” to see common play patterns in toddlers and what skills they teach), but the bottom line is: Trust your child. Let them lead the way.

But that trust apparently does not extend to neurodivergent children.

In the case of C, I know that she learned through play. She never would've learned to walk the stairs if we hadn't practised together. And her pointing at picture books was eventually followed by her mimicking sounds and, later on, entire words.

But the logic of “dysfunctional play” isn't just applied to C, but to children with all kinds of developmental disabilities, everyday. All the time, children are assumed to play in ways that don't teach them anything – even when, in my opinion, we have evidence to the contrary.

---

Let's look at two things we know about autism, for example:

1. A typical way of autistic play is organizing objects in patterns. This, too, is often described as “dysfunctional”
2. Autistic people are very good at recognizing patterns

Now, I'm no expert, but shouldn't we be looking into this before deciding that lining up toys is a waste of time that needs to be trained out of you? Or do you need autistic pattern recognition to see the possible connection here?

Different ways of organizing objects also require patience, motor skills, memory, focus, attention to detail (another thing autistic people tend to be exceptionally skilled at) and surely a variety of other skills I didn't even consider.

But, as Luna Rose points out, so-called “repetitive play” isn't just about the activity you can observe. She concludes that lining up toys isn't productive – but the thoughts that accompany it are. I disagree with the first part of that statement, but the second part is important. Not just when it comes to lining up toys, but to other forms of “repetitive” play too.

As a child, I could sit on the swing for hours on end. Now, I can't do that without getting dizzy, and my swinging has been replaced with pacing. But what both have in common is imagination. I was (and am) thinking about all kinds of scenarios, from imagining fantasy worlds to “re-playing” (and processing) conversations I had earlier that day. And I know from other autistic people that I'm far from the only one who uses my imagination to practise social skills. At other times, I'm imagining teaching an audience about topics that interest me – including pedagogy, which is probably how I got all A's on my final exams. Mental infodumping makes up 99% of my studying.

Actually, just think about how much autistic kids might be learning while engaging in their special interests.

It probably won't surprise you that the more I think about this, the more I disagree with the very concept of play being “dysfunctional”.

Afterall, why would neurodivergent children (and adults) have any less of a talent at detecting what their brains want to learn? Our play might be different, but that just means it teaches different skills (or the same skills in a different way), not none.

Besides, even if it didn't teach anything, that still wouldn't excuse the conditioning some kids are exposed to to get rid of a perfectly harmless behavior. Sometimes it's okay – and important – to do “unproductive” things for fun or relaxation. (Honestly, that's a contradiction in and off itself. If it relaxes you, it's productive in my book. But that's another discussion.)

---

Conclusion

Trust your child. Let them lead the way :)

#neurodiversity #autism

This is a list of autistic traits based on the ICD-11 diagnostic guidlines for ASD as of February 2022. The arrows (–>) point to examples created by me. (Examples. I personally may or may not be experiencing them. To cover as much of the spectrum as possible in a list like this, I included things I don't experience as well). Only the bullet points are actually mentioned in the guidelines.

Social

• I do not understand what people are communicating to me
  • –> I don't understand what people are communicating with their tone of voice
  • –> I don't understand what people are communicating through gestures
  • –> I don't understand what people are communicating with their face
• I am not interested in what other people communicate to me
  • –> I don't think a lot about what people's body language, face, or tone are supposed to tell me
  • –> I assume that, if there's something important, people will tell me with their words
  • –> Sometimes I'm so focused on a conversation or a topic that I don't have any energy left to also focus on somebody's body, face, or tone
• People tell me that my reactions to others are “weird” or even wrong
  • –> I don't know how to react to someone who “sounds” or “looks” sad/happy, but doesn't tell me they are sad/happy
  • –> Sometimes it takes me a while to process what somebody means, so I don't react quickly enough or at all
  • –> When I don't know what people mean, I often react in a way they didn't expect. For example, somebody uses their face to tell me they are excited, but I don't notice, so I don't react to their excitement.
• I have trouble using the same methods of nonverbal communication that other people use
  • –> It's difficult to make eye contact the way people expect me to
  • –> I have trouble using gestures and body language in the same way most people do
  • –> My face communicates differently from other people. For example, I might smile when I'm feeling anxious or insecure
• I use those methods of nonverbal communication less than other people
  • –> I avoid eye contact, for example because it is painful
  • –> People often think my emotions are less intense than they really are, because they look less intense on my face
  • –> People tell me I have a “flat” or “monotone” voice
• I don't understand the way people use language when talking to me or to each other
  • –> I have trouble understanding things like sarcasm or implied meaning
  • –> I don't (automatically) know what “How are you” could mean other than its literal meaning
  • –> It takes me a while to understand metaphors and idioms
• I don't use language the same way that others do when I'm in social situations
  • –> People look for hidden meaning in what I say, even though there isn't one
  • –> People don't understand when I'm being sarcastic or joking
  • –> I don't use the same social rituals others do, like small talk
• I have trouble with back-and-forth conversation
  • –> When people ask me a question, like “How was your weekend”, I usually just reply without asking a question back
  • –> Sometimes I don't know how to reply to other people (or I don't know that I should), so it's mostly just them talking
  • –> When I explain something I'm interested in, it's usually just me talking and never the other person
  • –> I don't know how to start a conversation
• I don't adapt my communication style to context
  • –> I don't know the difference between talking to someone I know very well and talking to a stranger or casual acquaintance. People may think I'm either “overly polite” or “naïve”.
  • –> I talk the same way at a funeral, a normal workday, or a birthday party. People may call me “oblivious” or “tone-deaf”
  • –> I talk the same way to bosses or teachers (“superiors”) as I do to coworkers and classmates (“equals”). People may think I'm either “disrespectful” or “insecure”.
• I don't instinctively know what other people are thinking or feeling
  • –> I may be able to come up with possible reasons for why they might be acting the way they do, but I can't filter out the “correct” one
  • –> Because I don't always understand what someone's face, body, and tone are communicating, I seem to be missing a lot of clues about what they're feeling
  • –> I can't predict what people will feel when I do something
• Even when I do understand how people are feeling, I don't react the “right” way
  • –> I don't know how to comfort someone who's sad or show excitement for someone who's very happy
  • –> Sometimes other people's feelings take me off-guard and I don't know how to react
  • –> When people tell me about their problems, I have a tendency to problem-solve or relate their problems back to something else (for example, my own experiences). Sometimes people aren't comforted by the way I do that.
• In a conversation or relationship, the other person and I don't share our interests to the same degree
  • –> When I'm very interested in something, that's sometimes all I care about. Then I may not ask other people for their interests
  • –> I don't often think to point out things I notice to other people
  • –> I don't know how to point out things I notice to other people
• I have trouble building and keeping up relationships
  • –> I have few friends, or my friendships are largely superficial. If I'm interested in a romantic partner, I might have problems with that, too.
  • –> My friendships don't last long and are sometimes one-sided (for example, they often contact me but I rarely contact them). My friends seem to need more time together to keep up a friendship than I do.
  • –> I don't know where the line is between acquaintances and friends, or how to cross that line

Repetitive Behavior

• I need familiarity
  • –> It's very difficult for me to adapt to new environments
  • –> Small changes in my home, like a small new piece of furniture, feel very upsetting
  • –> It's very distressing when something changes about a thing I enjoy. For example, if my favorite TV show changes their theme song
• I need predictability
  • –> I can't do things spontaneously, like meeting up with friends or going to work on short notice
  • –> When something unpredictable happens, I have difficulty coping. For example, when my family comes home earlier or later than expected
  • –> The world often feels unsafe, like I can never know what will happen next. To cope with that, I make my day as predictable as I can
• I have specific routines I need to follow
  • –> I always need to take the same route to get to a certain place. When that route isn't available, I get very upset and may not be able to reach my deshination without help
  • –> I need to do certain things at specific times of the day, like always having dinner at exactly 7p.m. If I miss that time, I might not eat at all.
  • –> I thrive when my schedule is exactly the same day after day
• I follow rules more than others do
  • –> I don't understand “unwritten rules”, so clearly defined rules and guidelines give me orientation. I get very confused or upset when someone breaks or “compromises” on a rule
  • –> I question the “exceptions” people make to rules, and the logic behind them. Sometimes they think I'm doing it to my own advantage (for example, to win a game), but I genuinely am trying to understand
  • –> I don't compromise on my morals. For example, if I think lying is wrong, I won't lie, even when people think I should. There are no exceptions to morality.
• Some things I enjoy seem “repetitive” or purposeless to others
  • –> I like lining things up, sorting them by color, or otherwise organizing them
  • –> I like creating lists on topics I like, even when those lists don't serve a purpose (other than being fun to write and read!)
  • –> I might move a certain way, like always walking in a circle around pieces of furniture when walking past them
• I stim (short for “self-stimulation) by moving my body in certain ways
  • –> I move my whole body, like rocking back and forth, from side to side, or spinning in circles
  • –> I move individual body parts in certain ways, like flapping or wringing my hands, shaking my feet, or twisting my fingers
  • –> My stims help me express or regulate my emotions or regulate my sensory system
• I walk or sit in “odd positions”
  • –> I walk on my toes
  • –> I hold my hands in front of my body in a position that is sometimes called “raptor hands” or “dinosaur arms”
  • –> I sit in ways that apply pressure to my body, like sitting on my hands or holding a leg my arm
• (Some of) My interests are more intense than other people's interests
  • –> I spend most of my time on my interest(s), to the exclusion of other activities
  • –> I get very excited when I do, say, or observe something related to my interest
  • –> I can relate everything back to my interest(s). It's like my interest is the perspective from which I see everything.
• I have an item I rely on emotionally, even though it's not an item people would consider a “typical comforter”
  • –> I need to bring this item everywhere to feel comfortable
  • –> One of my strong interests is this specific item
  • –> This item helps me cope with difficult feelings and situations
• Some sensory information is a lot stronger for me than it is for others
  • –> Fabrics, light touch, or the texture of some foods hurt me
  • –> I hear things others don't hear, like electricity in the walls. Some of these sounds are painful. Earplugs or ear defenders can help with the pain.
  • –> Bright lights or certain colors give me a headache. Sunglasses and dim lights can help me with that.
  • –> I smell things so strongly that I can taste them
• Some sensory information is a lot less intense to me than to others
  • –> There's types of pain that I don't feel as strongly (For example, toothache, headache, or cuts). Because of this, I might underestimate the severity of an illness or injury
  • –> I have trouble telling when I'm hungry, thirsty, sick, or need to use the bathroom
  • –> Sometimes I don't notice objects, sounds, smells, lights, flavors, textures, or where my own body parts are
• I stim by actively seeking out types of sensory stimuli
  • –> Smells and flavors, even some that other people don't like (For example: food, perfumes, body odor)
  • –> Fabrics and other tactile stimuli (For example: clothing, hair, food)
  • –> Watching lights, certain colors, or specific movements (For example: Using a swing with your eyes closed, and watching the colors change)
  • –> Sounds (For example: bells, animal noise, listening to the same song over and over)

On autism and alone time

#neurodiversity #autism

“Just be yourself”

I was told this when I was around 11, by a teacher. As always, my mother had dragged me to the parent-teacher conference (it's called “parent-teacher” for a reason, mom). She had this idea that it's about me, so it should involve me. Nice idea I guess, but I already knew the routine.

My teacher would ask my mother if she had anything she wanted to discuss. She would ask how I'm doing at school. My teacher would tell her I'm doing well on written exams, but still haven't started participating more in class. Sometimes they would dwell on that a little, give me super helpful advice like “raise your hand just once per lesson”

...but sooner or later they'd always get to the same discussion. Why are you always alone? The other kids ask you to play with them, why don't you? They won't always do that. Then you're all on your own.

I would usually just sit there, letting it happen, said what I thought they wanted me to say. A few times I might've told them that I wanted to be alone, that being with the other kids was tiring, that I preferred my books. They ignored me, or perhaps didn't believe me. And, since I couldn't put my thoughts into words beyond that, I just waited it out. But I never understood why the other children were allowed to spend their breaks relaxing and having fun the way they enjoyed – and I was not.

That's when my teacher dropped the “Just be yourself”-line. Aside from the wrong assumptions (“just be yourself” is what you tell people when they're shy. I wasn't shy, just exhausted), and the overall uselessness (When has “just be yourself” ever helped actually shy people?), the thing that bothered me the most was the irony.

You spend day after day telling me that the way I enjoy myself is wrong, that I should force myself into situations that wear me out and pretend to have fun. And then you have the audacity to tell me to “just be myself” throughout the process.

But there was another contradiction, one I couldn't quite grasp yet, but that I think I've understood now: “Being myself” and socializing were incompatible to me. I think in words most of the time, because most of the time I'm imagining, internally infodumping, or – nowadays – practising for events like job interviews. But my own thoughts and feelings, the kinds of things people talk about while socializing – those aren't in words.

Do you speak more than one language? If yes, you have most likely made the experience that some things just don't translate. That's what it's always like for me: Every conversation feels like painstakingly translating my thoughts into a language that has no equivalent to 90% of the words I need. So I say the next best thing, the words that seem the most similar to my actual thoughts. But then there's the next problem – I can't always do that quickly.

This results in interaction feeling like improv: the core rule is “yes, and...”. I can't correct people's wrong assumptions. I can't take things back. I can't say no. I don't know why. I just know that this leads me even further down the miscommunication spiral; I can't put my actual thoughts into words, so people misunderstand me, all the time. And I can't correct them. I can only adapt to their assumptions.

See now how I can't “be myself” while interacting with others? See why I was so exhausted by even the idea of spending my free time socializing?

Everyone needs friends. Socializing and relationships are needs most people have. Maybe they could've helped me with that, if they had first acknowledged the dilemma of needing 24 hours of alone time a day, but still having the human need to socialize. Or the dilemma of being unable to communicate my true thoughts, but still having the human need to be understood.

But all I got instead was “just be yourself”

Functioning labels aren't fun

#neurodiversity #autism

Jump to: Where do they come from? So what's the problem? So why do people still use functioning labels? What to say instead Further Reading

Person with low-functioning autism, on the higher end of the spectrum, mildly autistic, Level 2 Autism Spectrum Disorder...

The language surrounding autism is a tangled mess of medical terminology, language created by autistic people, but also words used to belittle us. It can be incredibly difficult to find out which one is which, and it would take too long to list every single term used to describe autistic people, and give an in-depth description of the background of those terms.

What I want to talk about is the language used to differentiate between different autistic people – more specifically, I will talk about the words “low-functioning” and “high-functioning”.

To an outsider, those words might make sense – The way autism presents itself varies widely between different people, so at first glance it seems good to have a short-hand for describing different groups of autistic people. But it takes two minutes of googling to find out that the majority of autistic people do not think that way. In fact, functioning labels are widely rejected by the community; at best, they're just seen as inaccurate, at worst as offensive and harmful.

So, what are functioning labels and what do they describe? Why are they bad? And what language can we use instead?

(Oh and a warning: There are a lot of acronyms incoming)

Where do they come from?

Neither “high-functioning autism” (HFA) nor “low-functioning autism” (LFA) have ever been a diagnosis in either the Diagnostic Statistical Manual (DSM) or the International Classification of Diseases (ICD).

In the most recent revisions – the DSM-V and the ICD-11 – autism is classified as “Autism Spectrum Disorder”. In addition to this label, three things are usually specified:

1. Language Impairment
2. Intellectual Disability
3. (ICD only) Loss of acquired skills
4. (DSM only) Level of support required

None of these specifiers use the term “functioning”.

To find out where functioning labels came from, we have to look back further, to the 1980's. At this point, it had only been a few years since the WHO first classified “Pervasive Developmental Disorders” – a category including the diagnosis of Autistic Disorder.

“Autistic Disorder” was characterized by “markedly abnormal or impaired development in social interaction and communication” and “a markedly restricted repertoire of activity and interest”. It did not yet specify a delay in verbal speech, which would later become the main difference between “Autistic Disorder” and “Asperger Syndrome”.

One thing that was already known to autism research though, was the fact that when it came to intelligence, autistic children were all over the place. Some had obvious and severe learning difficulties, others were described as “highly intelligent”. To reflect that, autism researchers coined new terms to distinguish between autistic people (primarily children) with intellectual disabilities and those without. That's how high-functioning autism and low-functioning autism came into being. They were never actual diagnoses, just terms used in autism research.

The new diagnostic criteria requires clinicians to simply specify whether or not someone has an intellectual disability or not, making HFA and LFA essentially obsolete.

So what's the problem?

It seems like high- and low-functioning are just outdated terms, but other than that, what's wrong with them?

Well, for one, functioning labels are often used interchangeably with severity labels. Instead of a spectrum, people think of autism as a gradient from “mildly autistic” to “very/ severely autistic”. It's this idea that the further on the autism side you are on this gradient, the more autistic traits you will have, the lower your IQ will be, the more difficulty you'll have with verbal speech, and the more support you'll need with everyday tasks.

By now we know very well that that isn't true. Functioning labels especially suggest a connection between IQ and adaptive skills. But having an IQ over 80 – and subsequently being labelled “high functioning” does not indicate good life skills. Quite the opposite – autistic people with ID (intellectual disability) tend to be as independent as you would expect anyone with the same IQ and age to be. But the higher an autistic person's IQ is, the higher the discrepancy between their theoretical intelligence and their practical life skills will be.

Sometimes people use functioning labels to indicate how well people can mask (hide or suppress their autistic behaviors). This is in fact correlated with IQ test results, but it should not be confused with actually having less autistic traits, or with needing less support. All masking means is that the person can, for some time, make their autistic traits less observable to outsiders. It is not indicative of “functioning”, nor is it healthy.

But functioning labels are often used that way: You're smart, you can pass as neurotypical for a while, so you must be doing fine.

This logic can lead to autistic adults being denied support that they need, all because they may know the answers on a test. They may be unable to find or keep a job, not know how to make friends or how to distinguish between friends and bullies, and be unable to cook, drive, do laundry, or leave the house alone. All of these are common problems for autistic people regardless of IQ, but they may be ignored in people deemed “high-functioning”.

On the other side of this, someone may be able to work in a specific job, have friends, and would be able to learn tasks like cooking, cleaning and doing laundry – but if they're labelled “low-functioning”, they may be denied the agency to do so. People who are non-speaking are also often labelled low-functioning independently of intelligence.

And all of this isn't even taken into account that results on IQ tests can vary a lot for autistic people. Depending on when you take it, you may be labelled as either high- or low functioning.

In other words, functioning labels are vague, inaccurate, and potentially harmful. They are often used to make baseless assumptions – non-speaking people are assumed to have low intelligence, people without an ID are assumed to need no support, and so on.

So why do people still use functioning labels, then?

While autistic people and some autism researchers have called for people to stop using HFA and LFA for years, many people simply don't know. As I've described before, many see autism as a gradient – and if that is how you see autism, the assumptions functioning labels make may actually make sense to you. Trouble is, autism is not a gradient. It's a spectrum.

And then, of course, there are people who do know, but continue to use this language regardless. Many might not do this in bad faith, but we need to talk about those who do.

The thing with functioning labels is that theyre so vague, they can mean whatever people want them to mean.

Let's pretend I'm the parent of an autistic child and want to talk over autistic people. I do this by putting autistics into two groups: 1. Every autistic person who is able to communicate their opinions on autism to me is “high-functioning”. Their opinions aren't relevant to other autistic people. 2. Those who can't do that (or who i don't listen to because they don't use conventional methods of communication) are low-functioning.

Therefore, there are two kinds of autistic people: 1. Those whose opinions dont matter (high-functioning) 2. Those whose opinions we don't know, so other people – their caregivers – have to “talk for them” (low functioning)

And already, you have a method of portraying your own opinions on autism as more important than those of autistic people themselves. This can be especially harmful when it's used to promote dangerous autism “treatments”/“cures” like MMS (bleach) or myths like vaccines causing autism.

So what do I say instead?

Obviously not all autistic people are the same. We all have different struggles, different strengths, and different personalities. And sometimes these differences are important to the conversation, and we need the words to describe them. When doing this, we need to be more specific than putting people into two categories created to simply describe IQ. The sole fact that functioning labels are currently not only used to describe IQ, but many other things, is proof that we need more nuanced language regarding autism.

So next time you're about to talk about your “low-” or “high-functioning” autistic relative, think twice about what it actually is you want to describe. What aspects of their autism are relevant to the conversation? Is it their support needs? Their learning abilities? Their speech abilities?

Here are some examples:

❌”My cousin has low-functioning autism, so he can't talk.” ✅”My cousin is autistic and nonspeaking, so he communicates through sign language.”

❌”When I was a child, I had LFA, now I'm high-functioning” ✅”I'm autistic, and I was in special education as a child. Now I live alone and have a job!”

❌”My daughter is autistic, but she's high-functioning, so I don't understand why she can't do simple things” ✅”My teenage autistic daughter is very good at school, but she needs help with chores.”

❌”He's autistic? He must be really high-functioning.” ✅”He's autistic? I didn't notice, he hides his autistic traits quite well sometimes.”

❌”I have a sister with low-functioning autism” ✅”My sister is autistic and has an intellectual disability”

❌”My autistic son can't be left unsupervised, he is very low-functioning” ✅”My son can't be left unsupervised, because he's autistic and often doesn't see when a situation is dangerous”

Using specific language like that isn't only more respectful to the autistic person you're talking about, it also gives the person you're talking to much more information.

Further Reading

-'Decoding the High-Functioning Label' by Musings of an Aspie -Researchers call for the term 'high functioning autism' to be consigned to history -What about functioning labels? (Youtube Video) -“It's a spectrum” doesn't mean what you think it means -Autistic people about being called “high-functioning” -Fluctuating Functionality -Emma discusses functioning labels

The Classification of Autism Over Time

#neurodiversity #autism

This is a list of diagnoses that have, historically or currently, been given to autistic people. It includes outdated, pathologizing and possibly offensive language.

The terms in italics are diagnoses that were already considered forms of autism at the time. All other diagnoses are related to autism in some way, for example because of similar characteristics. They are diagnoses that may have been given to autistic children before their traits were recognized as signs of autism.

Note: The term “autism” as used in the DSM-I and DSM-II refers to a “pervasive lack of responsiveness to other people”

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Diagnostic and Statistical Manual of Mental Disorders (1952)

Schizophrenic reaction, childhood type Here will be classified those schizophrenic reactions occurring before puberty. The clinical picture may differ from schizophrenic reactions occurring in other age periods because of the immaturity and plasticity of the patient at the time of onset of the reaction. Psychotic reactions in children, manifesting primarily autism, will be classified here.

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Diagnostics and Statistical Manual of Mental Disorders, Second Revision (DSM-II, 1968)

Schizophrenia, childhood type This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical, and withdrawn behavior; failure to develop identity separate from the mother's; and general unevenness, gross immaturity and inadequacy in development. These developmental defects may result in mental retardation, which should also be diagnosed.

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International Classification of Diseases, 9th Revision (1978)

The 6th to 8th revisions of the ICD already included a chapter on mental disorders, but the 9th was the first to classify autism.

The following “Pervasive Developmental Disorders” (PDD) were classified in the chapter of “Other Psychoses”:

Autistic Disorder Disorder beginning in childhood marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest; manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual [This] type of autism [is] characterized by very early detection (< 30 months), social coldness, grossly impaired communication, and bizarre motor responses

This diagnosis comes closest to the type of autism first described by Leo Kanner in his 1943 paper “Autistic Disturbances of Affective Contact”. Alternative terms listed in the ICD-9 are “Kanner's syndrome”, “Childhood autism” and “Infantile Psychosis”

Childhood Disintegrative Disorder A pediatric disorder characterized by normal development for at least the first two years of life followed by a severe regression in language, social interaction, bowel or bladder control, and/or motor skills. The affected individual may also exhibit repetitive and stereotyped patterns of behavior similar to autism.

This type was originally described by Theodor Heller in 1908, making it possibly the earliest known form of autism. Heller considered it to be a type of childhood dementia (“dementia infantilis”). An alternative term used in the ICD-9 is Heller's Syndrome.

Other Specified Pervasive Developmental Disorders Neuropsychiatric disorder whose major manifestation is an inability to interact socially; other features include poor verbal and motor skills, singlemindedness, and social withdrawal Syndrome or disorder usually first diagnosed in childhood, characterized by severe and sustained impairment in social interactions and restricted, repetitive patterns of behaviors, interests, and activities

This diagnosis included multiple terms, including:

• Asperger's disorder
• Atypical childhood psychosis
• Borderline psychosis of childhood

Unspecified Pervasive Developmental Disorder

This category was used to diagnose people who met the overall description of a “pervasive develoomental disorder” but didn't qualify for any of the above diagnoses. This diagnosis is often simply referred to as “autistic traits”.

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DSM-III (1980)

The DSM-III classification of autism was overall very similar to the ICD-9, since they were published at around the same time. The descriptions in the DSM starting with the third revision are much more detailed than the ones in it's predecessors. So instead of copying the entire descriptions, I will summarize them best as I can.

Like the ICD-9, the DSM-III also used a category called Pervasive Developmental Disorders which included:

Infantile Autism

Equivalent of the ICD-9 Autistic Disorder. A key characteristic was a “pervasive lack of responsiveness to other people”, which actually used to be the definition of the word “autism”. Other signs were language deficits, absent or “peculiar” speech (e.g. echolalia), a resistance to change, and “peculiar” attachments to objects or topics. Infantile Autism was believed to be about three times more common in boys than in girls. It was also considered very rare, with 2-4 out of 10,000 cases.

Childhood Onset Pervasive Developmental Disorder

This type of autism was believed to have its onset later than Infantile Autism (between 30 months and 12 years of age). Diagnosis required a “gross and sustained impairment in social relationships”, as well as other characteristics. Those other characteristics could include things like sensory hyper- or hyposensitivity, “oddities of motor movements” (stimming), resistance to change, or certain differences in emotion or nonverbal communication. “Sudden explosive anxiety” was also considered a trait of childhood onset PDD. This diagnosis is the first (in either the ICD or DSM) to recognize differences in sensory processing as an autistic trait.

Atypical Pervasive Developmental Disorder

Equivalent of ICD-9 unspecified PDD

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In another category (Other disorders of infancy, childhood and adolescence), the DSM-III included the diagnosis:

Schizoid Disorder of Childhood and Adolescence

This used to be considered an early-onset personality disorder, but today “Schizoid Disorder of Childhood” is believed to be a part of the autism spectrum. Characteristics included social isolation and -anhedonia (a lack of enjoyment of social interaction), an apparent disinterest in friends, and a lack of interest in social activities. It's important to remember that psychology is only starting to take into account the actual thoughts and opinions of autistic people; diagnoses like this one were likely often made based on perceived behavior rather than what the child actually wanted.

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ICD-10 (published 1990, used 1994-Dec 2021) and DSM-IV (1994)

Putting these together because they are extremely similar. Like their respective predecessors, both of these use the category “Pervasive Developmental Disorders” to diagnose autism:

Autistic Disorder (DSM) or Childhood Autism (ICD)

Characteristics are divided into three groups: 1. “Impairment in Social Interaction” 2. “Impairment in Communication” 3. “Restricted, repetitive and stereotyped patterns of behavior, interests, and activities”

In addition, one of these three needs to be present before the age of three years: “Delay od abnormal functioning in” 1. Language 2. Reciprocal social interaction 3. Symbolic Play

Childhood Disintegrative Disorder

CDD includes a typical development for two years, then a sudden loss of skills between the ages of two and ten. Those skills may include language, social skills, bladder control, play, or motor skills.

It also includes the same three sets of characteristics as seen in “Autistic Disorder” / “Childhood Autism”

Asperger's Disorder (DSM) or Asperger Syndrome (ICD)

A form of autism with no significant delays in language or cognitive development. Diagnosis only requires “impairment in social interaction” and “repetitive behavior, not impairment in communication” (Although it should be mentioned that nonverbal communication is mostly covered by the social interaction aspect)

While the ICD-10 and DSM-5 criteria are very similar to each other, there are other descriptions and sets of diagnostic criteria that directly contradict these or one another. In other words, nobody is quite sure what exactly AS even is – it seems to have been used to describe multiple types of autism that are in some way similar to Hans Asperger's descriptions of his patients.

One of the alternative terms listed in the ICD-10 is “Schizoid Disorder of Childhood”, hence why I listed that diagnosis earlier.

Atypical Autism

In the DSM, this is includes in Pervasive Developmental Disorder – Not Otherwise Specified, but in the ICD, it's a separate diagnosis. Atypical Autism refers to a form of autism that does not meet criteria for childhood autism, either because the minimum number of traits aren't met, or because autistic traits first occured after the age of three, or both.

Other Pervasive Developmental Disorder

Pervasive Developmental Disorder – Not Otherwise Specified, including Atypical Autism (DSM) or Unspecified Pervasive Developmental Disorder (ICD)

This diagnosis is given to people who have characteristics of PDD but who don't meet the criteria for any specific one. According to some studies, PDD-NOS includes three main groups of people:

1. Those who do not have impairments in communication (and thus don't meet criteria for Childhood Autism) but who have a language or cognitive delay (and thus don't meet criteria for Asperger Syndrome)
2. Those whose autistic traits can't be fully identified, for example because they were diagnosed later in life (and may not have records of their childhood), or because intellectual disability/ communucation difficulties make ir difficult to udentify autistic traits
3. Those who mostly meet the criteria for Childhood Autism/ Autistic Disorder, but with little repetitive behaviors

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Pervasive Developmental Disorders that are not considered forms of autism [anymore] include:

• Rett Syndrome
• Overactive disorder associated with mental retardation and stereotyped movements (ICD only)

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DSM-5 (2013) and ICD-11 (published 2018, used starting 2022)

In the most recent diagnostic manuals, autism has been merged into one diagnosis:

Autism Spectrum Disorder

ASD includes two main categories: 1. “Persistent deficits in social communication and social interaction”. This includes deficits in social-emotional reciprocity, nonverbal communication, and relationships. 2. “Restricted, repetitive patterns of behavior, interests, or activities”, including characteristics such as sensory hypo- or hypersensitivity, stimming, need for sameness or routine, or intense interests.

ASD is also the first diagnosis to recognize that a. Autistic traits may be masked later in life b. Autistic traits may not become obvious until demands become too high

This last part makes the diagnosis more inclusive, and adult diagnosis easier and more common. However, a diagnosis of ASD requires a lot more characteristics than previous diagnoses, especially in the area of social interaction.

Because of this, only ca. 57% of all people diagnosed with Autistic Disorder, Asperger's Disorder, or PDD-NOS meet the criteria for ASD. This mostly affects those diagnosed with PDD-NOS, followed by those with Asperger Syndrome. Those diagnosed with Autistic Disorder meet the criteria for ASD in 3 out of 4 cases.

The DSM-5 does specify that people who received any of the above diagnoses using the DSM-IV, should receive a diagnosis of ASD. However, a lot of people who are (or will be) assessed later will not meet criteria for ASD, even though they previously would have received a diagnosis of a PDD. The most common reason for this is not meeting the threshold for “impairments in social interaction and communication”. A diagnosis for Asperger's, for example, only required one out of three characteristics in this area, while a diagnosis of ASD requires all three.

Social (Pragmatic) Communication Disorder (DSM only)

This diagnosis is closely related to autism and has been called a “reincarnation of PDD-NOS”.

More specifically, it would probably fit the third “type” of PDD-NOS quite well – SCP is characterized by similar difficulties in communication as ASD, but a lack of repetitive behavior. The DSM specifies that autistic people may mask repetitive behavior later in life so SCP should only be diagnosed if the person has never met that part of the ASD criteria.

SCP includes four main characteristics:

1. “Deficits in communication for social purposes”, e.g. greeting
2. Problems adapting communication to context
3. Difficulties following rules for communication
4. Difficulty understanding nonliteral aspects of language (e.g. sarcasm)

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Sources

• DSM
• DSM-II
• DSM-III
• DSM-IV
• DSM-5
• The ICD- 9 browser
• The ICD-10 browser
• Global Clinical Practice Network ICD-11 Autism Spectrum Disorder
• The ICD 10 classification of Mental and Behavioral Disorders (PDF)
• Redefining autism spectrum disorder using DSM-5
• “Specifying PDD-NOS: a comparison of PDD-NOS, Asperger syndrome, and autism” as cited in the Wikipedia article for PDD-NOS (12th source)

(Draft)

General Information

ASAN About Autism What Is Autism? The DSM-V diagnostic criteria DSM Criteria for autism explained Provisional ICD-11 Diagnostic Guidelines “Could it be Aspergers” lecture by Tony Attwood “Aspergers in girls” lecture by Tony Attwood

Lists of autistic traits

Inclusive autistic traits A list of “atypical” autistic traits

Collections

Autism Wiki Ask-An-Autistic video series Autism Resources (lots of different stuff) Musings of an Aspie: Essential Reading AWN resource library Stranger Darker Better Autism FAQ

Specific Traits

SPD Checklist Sensory Processing

Other

What is the autism “spectrum”? ASAN Welcome to the Autistic Community What North American Autism Orgs (not) to support Don't Mourn For Us Tests

Neurodiversity Terminology

Autism 101

Liberating Ourselves From The Pathology Paradigm

Autistic Peer to peer communication study

The Double Empathy Problem

° Damien Milton: On the Ontological Status of Autism: the ‘Double Empathy Problem (PDF)

NAS: The Double Empathy Problem

Advice

Internet Safety Guide – Thanks to Chris for the link!

Dental Care (May contain ads) – Thanks to Byte for sending me the link!

Bin

(Skip this part. Here's where I drop links that I've been sent but haven't looked through yet)

https://docs.google.com/document/u/0/d/1UwLczu7i-t9nSFqUQlcgIwHsfdGGBR0Ayxldvdk01BU/mobilebasic

https://bookhobbit.tumblr.com/post/79766189384/a-self-diagnosis-masterpost

Part 5 – B1: Repetitive Behaviors

The Autism Spectrum in the DSM-V

#neurodiversity #autism #dsmasd

What the DSM says

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaus­ tive; see text): 1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

What it can mean

Communication

• My way of speaking is often very “formal”
• I communicate by repeating words and phrases I have heard before, like on TV or in person
• I communicate by repeating what the other person said just before me
• Because it's difficult for me to come up with new ways of saying things, I often have “scripts” for everyday interactions (like what to say to the employee at the grocery store worker, or how to greet my neighbor)
• The language I use is so different from other people, that a lot of it can only be understood by those who know me well. I sometimes need people to “translate”
• when i'm tired/overwhelmed and withdrawing, i speak as if i were a child (”[my name] tired!“)
• I use nonsense/made-up words to communicate certain concepts that only people I know well can interpret
• I repeat the same inside jokes so frequently that they stop being funny (to everyone else in the group)

Stimming: How I stim

• I enjoy repeating the same word, phrase, or sound over and over again
• I stim by making sounds with my mouth, like tongue-clicking or humming
• Hand-flapping, rocking, jumping, clapping, hand-twisting, finger-flicking
• Spinning in circles
• tensing my body, then releasing the tension
• Moving my face a certain way, which can look like grimacing
• grinding my teeth
• Tapping against my ears really quickly. I like the sound.
• I always pick my skin. I've tried to stop, but I even do it when I'm half asleep
• I enjoy looking at things move quickly, for example waving a pen in front of my eyes
• When I was little, I never pretend-played with my toy cars. But I did enjoy spinning the wheels *Turning lights on and off
• this overlaps with my eczema, but i'm constantly scratching!
• dancing, pacing, swaying/rocking back and forth between feet while standing, playing with my hair, letting other people play with my hair

Stimming: Why I stim

• To express my emotions
• I stim when I'm anxious or angry because it calms me down. I stim when I'm happy because it makes me even happier
• It's fun
• I'm so full of energy sometimes, I need to move
• It's like I'm “releasing happy-energy”. It just... boosts my happiness in a way?
• It helps me concentrate
• it's grounding when i'm anxious or overwhelmed, not specifically calming me down but sometimes like, brings me back into myself and my body — the opposite of disorienting
• I just do it, automatically

Other

• Some of my co-workers have nicknamed me “ballerina” because I always walk on my toes
• I like to sit in positions that others consider uncomfortable or painful (this can also be a stim). “Normal” positions, on the other hand, are uncomfortable or painful to me
• “T-Rex arms” or “raptor hands” (like this)

Continue to Part 0 – Sources Part 1 – Introduction Part 2 – Social-emotional reciprocity Part 3 – Nonverbal communication Part 4 – Relationships Part 5 – Repetitive Behaviors

Part 4 – A3: Relationships

The Autism Spectrum in the DSM-V

#neurodiversity #autism #dsmasd

What the DSM says

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history 3. Deficits in developing, maintaining, and understanding relationships, ranging, for ex­ample, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

What it can mean

• I can't “adapt” my social interactions to the circumstances. I talk to all people the same way, whether it's bosses, co-workers, friends, teachers, family, or casual acquaintances. To me, that means I am equally casually-friendly to everyone. But I know people for whom it means being equally distanced and polite to everyone.
• Even when I understand the “clues” people give me (e.g. that they're uninterested in the conversation), I don't respond to . I don't know how to “control” the course of a conversation in that way
• When I don't know how to react to a situation, I laugh. I know it's an inappropriate reaction, but it's automatic. It has resulted in things like me laughing after someone told me about the death of an acquaintance
• I don't know what kinds of things are “appropriate” to say in a given context. I might make jokes or ask questions that aren't considered okay in that situation
• I don't notice when someone else is uninterested in our current conversatiom
• I have always enjoyed solitary daydreaming more than imaginative play involving other children. I am very imaginative; it felt like involving other children forced me to compromise on my own imagination
• I stopped actively building on friendships in elementary school. For example, I stopped inviting other children to play, but still played with them when invited myself. To the adults around me, this only became apparent years later, when I started going to a new school with no old friends to initiate contact with me. This didn't purely happen out of shyness, but because I had found my first special interest – and that was simply more interesting to me than other children. I filled my time thinking about my SI, so I didn't feel a need to ask others to play or talk
• When I was younger, everyone seemed to have strong preferences about who they liked. I didn't have a “favorite teacher” or even a “best” friend
• Sometimes I don't know if people are having fun with me or about me
• As a teen, I get along well with children and adults, but not with my peers. Children are less complicated, and easier to understand. And adults are more patient with me than my peers, probably because they don't expect me to be “on their level”
• I want to make friends, but I don't know how
• I am not interested in making friends. Sure, it sounds good in theory, but not great enough to put that much time and energy in it
• I'm mostly too caught up in my own mind to pay much attention to the people around me
• I have a “fantasy world” I am continuously working on. It's much more engaging than the “real world”, and I trust the people in it more than my RL friends
• Sometimes I am so focused on my own thoughts, that I don't even notice the people around me
• Socialising is tiring. I prefer being alone, or at least with only one other person
• i struggle to form relationships and make connections with people who aren't on the spectrum or otherwise neurodivergent
• when i was younger, even when there were people i hung out/around with, i felt constantly ostracized and rejected by them, because i was never saying or doing the right thing
• feeling like you have a friend group where no one is really your friend
• I don't like being around strangers, but there's one thing that makes new groups easier than old ones. Once you have a certain image of me, that's set in stone. I adapt to what people seem to expect of me. I can't change in front of people. The only way I can embrace new aspects of me is by meeting new people. Because I don't know how to change the way I act in a group I already know. I just... adapt. I adapt to the roles people give me, the assumptions they make about me.
• I have never had more than one friend at a time. Friendships are work.

Continue to Part 0 – Sources Part 1 – Introduction Part 2 – Social-emotional reciprocity Part 3 – Nonverbal communication Part 4 – Relationships Part 5 – Repetitive Behaviors

Part 3 – A2: Nonverbal Communication

The Autism Spectrum in the DSM-V

#neurodiversity #dsmasd #autism

What the DSM says

A. Persistent deficits in social communication and social interaction across multiple con­texts, as manifested by the following, currently or by history 2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnor­malities in eye contact and body language or deficits in understanding and use of gestures: to a total lack of facial expressions and nonverbal communication.

What it can mean

• Eye contact is painful to me, so I avoid it
• Looking at someone's eyes takes a lot of my attention. I'm not able to both look at someone's eyes and focus on what they're saying
• People always tell me that I make too much eye contact, or not enough. No matter what I try, I can't seem to get it to the “right” level
• When I talk, I focus on my words, so I can't focus on things like body posture or eye contact. Because of this, I might do things like facing away from my listener
• I don't understand how to use posture for communication. How is the way I sit or stand supposed to communicate anything?
• Speech is just words to me. I don't understand all the other “layers” like tone or volume
• People sometimes tell me I speak too loudly or too quietly, but I didn't notice.
• I don't use gestures like pointing or waving
• I use gestures a lot. My hands are more expressive than my words
• I don't express my feelings through facial expressions, at least not the way others do
• I try to copy other people's facial expressions, but people tell me it looks “weird”, “unnatural”, or “exaggerated”
• I have had to practice to understand the body language and facial expressions of other people. There are some I still don't understand
• I know an autistic child, and understanding how he feels comes very naturally to me. I can understand how neurotypical people feel, but it's a skill I've had to work on. However, understanding the body language of this autistic child is something I can do very intuitively. I think this might be how neurotypicals recognize each other's feelings all the time.
• I don't express my own emotions the same way other people do. For example, others smile or laugh when they're happy. I jump up and down or flap my hands instead.
• I don't understand the way people communicate. I understand the words they're saying, but all the other things that are supposedly included in communication – like body language, tone of voice, or facial expressions – seem like a riddle I can't solve
• I constantly feel like I am performing and micromanaging my facial expressions, body language, etc., which is extremely tiring because I am constantly having to think about them
• Sometimes people tell me my tone was dismissive/annoyed, even though I was imitating my tone from a time people told me I sounded friendly/supportive. It's confusing
• my tone of voice doesn't change in conversations depending on the subject/emotions/my level of interest. I pretty much always sound disinterested even if I'm very excited by a topic
• I respond to stimuli differently to most people – for example, I make singing noises rather than crying when I'm in pain or distressed

Continue to Part 0 – Sources Part 1 – Introduction Part 2 – Social-emotional reciprocity Part 3 – Nonverbal communication Part 4 – Relationships Part 5 – Repetitive Behaviors