So, when I visited extended family earlier this year, I mentioned my autism suspicions to a relative of mine. Her response was a sidelong glance and, “What makes you think that?”
… since everyone to this point has either responded with variations on, “Wait, you mean you’re not diagnosed?!” “I’ve thought so for years. Are you going to get evaluated?” or “Don’t be silly. You’re not autistic – you can [do activity unrelated to autism]!” she took me off-guard. I stammered something about having difficulty with social interactions and sensory issues, and gave a few examples of things from when I was a kid that she remembered, but that got me thinking.
If I want to get evaluated and get whoever examines me to take it seriously, I can’t just say, “About two dozen people I know think I have it,” or “I seem to fit the criteria pretty well,” or what have you. I will have to be able to explain my points and back them up, especially since it’s so difficult to get a diagnosis while female-presenting. So I figured I’d go through the DSM-V criteria and make notes on whether parts apply to me, and if they do, give examples.
A. PERSISTENT DEFICITS IN SOCIAL COMMUNICATION AND SOCIAL INTERACTION ACROSS CONTEXTS, NOT
ACCOUNTED FOR BY GENERAL DEVELOPMENTAL DELAYS, AND MANIFEST BY 3 OF 3 SYMPTOMS:
- A1. Deficits in social‐emotional reciprocity; ranging from abnormal social approach and failure of normal back
and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of
initiation of social interaction.
Difficulty establishing back-and-forth conversations: Until I was 16, I had no idea how to small talk. Now, I follow small talk flow charts I’ve made up mentally for a variety of situations. Sometimes I lose my place in my flow chart (at least 2-3 times a week), and repeat myself. People who know me don’t mind. People who don’t know me get the impression I’m not listening and feel insulted. I would often go several days without speaking as a kid, in part because I was worried others would tease me for my lisp and stutter, but also in part because I just didn’t like making conversation because it was so difficult for me to figure out what to say and when to say it.
Inability to initiate an interaction: When I was younger, I would always wait until a store person noticed me and initiated the interaction because I didn’t know how to disturb them at their work without breaking my “don’t interrupt” rule. Now, at 26, I still have difficulty interrupting others at work, usually spending 2-3 sentences apologizing profusely for – and disproportionately to – the interruption. As well, I can’t do social chit-chat with strangers. At work conferences, I attach myself to someone else who can do the icebreaking for me. I don’t do this because I am shy, but rather because I recognize that I’m very bad at icebreaking and small-talk and I can’t afford a bad impression on industry people at a work conference. Perhaps a better phrasing of the previous sentence would be: I’m socially anxious because I know I’m bad at social interactions, rather than being bad at social interactions because I’m socially anxious. My social incompetence was there looooong before the anxiety, which arose only in response to others’ reactions to my social incompetence. This is illustrated by the fact that in places where I feel comfortable, I actually have more social screw-ups than where I’m nervous because I don’t have my anxiety helping me to stay in the right spot of my flow chart.
Problems with shared attention or sharing of emotions or interests with others: In game sessions, I can annoy the GM by getting distracted reading the rulebook. I monolog. A lot. Even when I don’t mean to. This can often lead to the impression that I think the other person is stupid, since I keep retreating the same ground over and over. It can also lead to the impression that I am domineering, insensitive, or have a one-track mind. As a child, I wouldn’t play with other children if they weren’t doing something I enjoyed. I’d go to a corner and read a book instead – even as old as ten or eleven, long past when most kids will take part in activities they don’t enjoy just because their friends are doing it.
Reduced sharing of interests: I won’t try something I’m not interested in just because you are, even if you’re my bestest best friend in the world. If I’m not interested, I’m not interested.
Affect: My facial expressions are often inappropriate. I smile when I’m nervous, upset or on-edge, which has gotten me backlash (I smile at funerals; enough said). By contrast my concentrating face looks completely overwhelmed to others and my content face looks upset or irritated to others.
- A2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated‐
verbal and nonverbal communication, through abnormalities in eye contact and body‐language, or deficits in
understanding and use of nonverbal communication, to total lack of facial expression or gestures.
Abnormal eye contact: I don’t make eye contact much with those I do like, and pretty much never with strangers or those I don’t like. I look at their forehead, nose, lips, or the air next to their head, instead. People have thought there was someone standing behind them because I can’t do eye contact normally. My parents used to assume me dishonest when I was a kid because I wouldn’t make eye contact. They’d yell, “Look me in the eye and say that!” and I couldn’t because they were angry. I picked up the “look at mouth, nose or forehead” trick around age 12 or so.
Posture: I haz an epic slouch. I’m 5’4.5″ without the slouch, 5’2″ with. I also have a tendency to hold myself stiffly with an odd sort of off-kilter lean that’s made some think I have scoliosis. I don’t, I just stand funny.
Facial expressions: See above re: affect.
Tone of voice: I usually speak too quietly or too loudly. People think I’m angry when I’m just trying to catch their attention, and they think I’m rude when I’m excited and amused when I’m angry. That I often engage in nervous laughter when I realize I’m about to blow up probably has something to do with why people think I’m amused and then are bewildered when I blow up.
Gestures: No idea.
Inability to understand nonverbal cues from others: Yes. Unless it’s very obvious. I miss sarcasm almost always and usually have to have something get hinted at about four different ways before I get subtext. I don’t get nonverbal cues like disapproval or awkwardness – as an adult, I’m usually skilled enough to pick up that they’re being sent my way, but not why. As a kid, I was completely oblivious to them until around 14 or 15.
- A3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with
caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in
sharing imaginative play and in making friends to an apparent absence of interest in people
I had no friends from third grade through seventh grade. None. I think that counts. As well, I was unable to maintain a friendship for longer than a year until 14. Most people my age had the same group of friends for several years. I was also bullied severely all the way through school, if that counts.
Lack of interest in other people: Check. I preferred the company of books to people until around age 19. I have the energy to maintain friendships with 4-5 meatspace people, including my partner. I have little contact with my family aside from family gatherings and visits they initiate in part because I’m very much “out of sight, out of mind” when it comes to other people, so I don’t realize, “Oh, hey, it’s been three months since I talked to my parents. Maybe I should call them.” Which sounds horrible, I know. But it’s true. I think it might have something to do with my EF issues.
Also check: I usually prefer solitary recreational activities (my martial arts and role-playing being the two exceptions). I would rather read a book than go drinking. I would rather play video games than go to a concert. I would rather go hiking alone or with my partner than in a large group.
Difficulties sharing imaginative play: Can only do it in stuff like role-playing games as an adult, where there are set rules and a setting that is self-consistent. Likewise, I could do it as a kid, but my “pretend” was very restricted: First, it had to be fandom (I was LARPing before I knew what LARP was) and second, it had to be self-consistent. I had a lot of rules to my pretending, so other kids didn’t often like to play with me. So I would play with my toys instead – they always followed the rules.
Difficulty with age-appropriate social activities: I don’t do bars, I don’t do clubs, I don’t do dancing, and I do but loathe shopping. That was true as a teenager, too. As a teen, while other girls were going to dances and hanging out at the mall, I was drawing up timelines of Tamora Pierce’s fictional universes, writing Star Wars fanfic, memorizing as many books and Star Wars screenplays as I could get my hands on, building model rockets, and doing some circuitry for fun. As a small child, I’d read about meteorology instead of playing on a jungle gym unless someone took my book away – and I’d usually start crying because they stole my book instead of going off to play.
Problems adjusting to different social expectations: Hell yes. I get told I’m being rude a lot. Case in point: I had a brain fart at a hotel on a work trip once – I thought the desk clerk was asking for my ID when she was asking for my key card back so she could activate it because she forgot to (er, yeah, not sure how I made that misunderstanding, either, but I guess that goes toward spoken & nonverbal communication issues, too, since stuff like that happens to me a lot). I said, “Sorry, blonde moment.” My coworker lightly smacked me on the arm and said, “Oh, my gosh, you’re so bad!” I asked later why. “She was blonde, silly!” “Oh, whoops.”
And I don’t even use “blonde moment” in my everyday vernacular. I don’t get why I slipped it in there, unless I was repeating something my sister had said, since she uses that slang a lot.
B. RESTRICTED, REPETITIVE PATTERNS OF BEHAVIOR, INTERESTS, OR ACTIVITIES AS MANIFESTED BY AT LEAST
2 OF 4 SYMPTOMS:
- B1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies,
echolalia, repetitive use of objects, or idiosyncratic phrases).
I stim & fidget a lot. A lot a lot a lot. I don’t know if my speech is repetitive, unless I’m going to get coffee, in which case, I might sing-song something like, “Coffee coffee coffee coffee coffee. Coffee coffee. Coffeeeee! Coffee coffee coffee.” If I really need the coffee.
(forgot myself and did that in front of a stranger a few weeks ago. His response, “I think it’s safe to say you like coffee.” Me: “Coffee! Yes, I love coffee! Coffee is awesome!”
Yeah, I can be a bit of a weirdo sometimes.)
Also: My parents and other adults who knew kid-me used to say it was easy to forget how young I was since I talked like an adult, and many have referred to kid-me as a “little professor”. My mother actually used that as a nickname for me for a while. I spoke like that because I mistakenly thought that more technical and precise language would help me to avoid misunderstandings with others. It was a clumsy attempt to compensate for what I was already aware of by the time I was fiveish: That I’m bad at subtext and will often send the wrong message nonverbally. I tried to get more and more precise with my verbal message to compensate for my jumbled and incoherent nonverbal messaging. Problem: I didn’t realize that, say, cephalalgia isn’t in the vocabulary of most other eight-year-olds.
On the stereotyped/repetitive use of objects: I spend game sessions stacking and re-stacking my dice. I tap pencils/pens between my index finger and thumb. I am constantly twirling my keys on their lanyard. People know I’m coming before I enter the room because they can hear the clink-clink of my housekeys on the lanyard as they crash into my hand. Etc.
- B2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance
to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress
at small changes).
Define “extreme”. I’ve been known to burst out crying because I had too many changes to my routine in a day, and I explode at my parents over the phone whenever they pull the, “Hey, we’re visiting tomorrow, can you put us up?” thing they’re so fond of doing. Do those count in an adult? When I was a kid, I had about 9 foods I’d eat. I had PB&J with an apple, an orange, and milk every day for lunch at school from kindergarden through grade 11. If something was wrong (like if mom substituted ham – which I hated – for the PB&J because she thought I could use variety), the lunch would stay in my lunch bag uneaten. I started packing my own lunch in sixth grade because I got sick of going hungry because mom was doing it wrong. Does that count?
After reading further into the .pdf I linked above, I would say I’ve grown out of this one to some extent. I do still display the rigid thinking subcomponent of this one to a degree and difficulty with transitions to a degree, but I don’t know if anything I do under this category as an adult is beyond normal. As a kid, I was a lot stricter with this.
…. unnnless my conversation flow charts count as “ritualized patters of verbal … behavior”. Because I pretty much rely entirely on my conversation flow charts for small talk.
B3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or
preoccupation with unusual objects, excessively circumscribed or perseverative interests).
See above about Tamora Pierce stuff and Star Wars when I was a teenager. As a kid, I could look in a meterology textbook and tell you the name of any type of cloud and what it meant weather-wise. Currently, my interests are video games (replaying Mass Effect, just finished playing Shadowrun Returns), tabletop roleplaying games, chemistry and martial arts. Oh, and books. I have over 1500 books. Does that count?
Perseverative interests: I continued with my MSc for two years with no positive results. Pretty sure that counts. Also, martial arts: I’m bad at physical stuff, but I became good at martial arts through a shitload of practice.
B4. Hyper‐or hypo‐reactivity to sensory input or unusual interest in sensory aspects of environment; (such as
apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or
touching of objects, fascination with lights or spinning objects)
Yes. I’ll walk with my eyes shut if I forget my hat because the sun hurts my eyes. Yes, I have walked into stuff because of this. Yes, I have walked into people because of this. But falling over and rolling my ankle is less uncomfortable than walking with my eyes open with no shade in bright sunlight.
I buy no clothes with tags. If I find a shirt I like, I buy as many as I can afford, and the same is true of pants and underpants (seamless underpants with no elastic band because it bites into my hips and is uncomfortable), and I wear only two types of bras (plain, half-cup bras for work, and Under Armor racerback bras for sports). If I could get away with it, I would wear sports bras always.
I get cold very easily, so I carry or wear sweaters even in the middle of summer because to me long pants and a sweater in the middle of summer is better than risking that a thunderstorm will roll in and I’ll get cold. I hatehatehate cold.
Loud noises and high-pitched noises irritate me to the point that I will cover my ears like a little kid. If the noise is unbearable enough, I might whimper or yell about it.
I love watching coins spin. Rather stereotypical, I know.
C. Symptoms must be present in early childhood (but may not become fully manifest until social
demands exceed limited capacities)
I was little professory by three, and I was getting in trouble for fidgeting by five, and I started getting chastised for being rude and my parents started to notice my lack of interest in other kids by about 6 or so. So I think that’s a check.
D. Symptoms together limit and impair everyday functioning.
They did hugely when I was a kid. I spent more time in in-school suspension than I did in class for most of elementary school. As a teenager, figuring out social stuff became a special interest, and that’s when I drew up my conversation flow charts. As an adult, people don’t mind that much that I fidget, though I’ve been chided to pay more attention when I am paying attention and trying to concentrate. I get told a lot that I’m naive, and my literalness impairs my ability to engage in “office banter” type interactions with my coworkers. I’m okay as long as the conversation stays on stuff I’m interested in. Once it deviates, I’m kind of lost and to be frank, I tend to tune out.
I’ve gotten reprimanded at former jobs for “inappropriate” tone of voice or facial expressions, and I nearly lost a job once because I lost speech and wasn’t able to protest that they’d done the performance review after I’d been working over 12 hours straight with no break or water in the middle of summer and I couldn’t see straight because I was so dehydrated. My supervisor saved my job. That I’ve never taken a social job since that one is, I’m certain, the only reason I haven’t lost a job yet.
There are certain things I can’t do: I can’t do my taxes. The bureaucratic bullshitese drives me up the wall – particularly how nothing about tax forms make sense. I can’t do sales. It’s too draining. I can’t do socialization that’s pretty much expected at conferences unless someone comes with me to act as a sort of social guide. I go to do the speech(es), they go to do the social chit-chat.
So, uh, yeah. All that up there and more I didn’t add in because this post is long enough already is why I’m fairly sure I’m autistic. As my sister put it once, reading the diagnostic criteria with me in mind is kind of like checking off a checklist.