rockinlibrarian | Thoughts on the Autistic Spectrum, part 2

So when I posted "Thoughts on the Autistic Spectrum" now-part-one, a lot of my friends perhaps misinterpreted the reasoning behind my post-- "You're not weird! Lots of people do those things!" Really I was just explaining my odd emotional state, not asking for reassurances that I'm normal. I know I'm not NORMAL, and I don't need reassurances that I AM. Whatever else I am, I AM neurodivergent. It's that labels are so weird, and there's so much overlap between conditions, and I sometimes am not sure how to refer to myself? And at that moment I was feeling bad about my differences precisely BECAUSE they were the differences that have brought me the most grief over the course of my life. That's not an "everybody feels that way" sort of thing, that's a specific "bad things happened to me in relation to these things and I still have scars" thing.

I said then that I didn't feel relief like I felt like when I found out I had ADHD, because the scars were too deep, but now that I'm not feeling quite so raw, I admit a lot of it is in fact a relief. I wasn't a party-pooper baby, I had noise-induced meltdowns. Okay then! Let's take care of that little girl, then, not tell her to just suck it up. So on and so forth.

Last week I pulled a Temple Grandin book off the return shelf-- a relatively recent one. The Autistic Brain. She wrote it soon after the DSM-V came out, and she expresses some reservations about the way "Autism Spectrum Disorders" is now one big category instead of having more specifics-- only because it lumps so many different issues together. In fact, she goes into a lot of the "labels vs. symptoms" issues I've gone through time and again in my writing on these topics. We need to stop thinking of "Autism" as a specific something that can be cured, and focus more on a symptom-by-symptom basis-- after all, it's not "autism" that's a problem, it's specific symptoms in specific situations. And "autism" isn't an identical condition in everyone it appears in, anyway!

Also, there was an "Autism Quotient" self-assessment in the back. "It's not an official diagnostic tool," but the average score is 16, and people who score 32 and higher tend to have been diagnosed with what was once called Aspergers. I took it and got 31. *headdesk* The story of me being right there on the edge but not exactly continues!

But again, these things were codified based primarily on male data. Female autistic experiences line up far better with mine-- though again, not exactly. BECAUSE EVERYONE IS DIFFERENT. Anyway, I found a "Females With Aspergers Syndrome Checklist" here the week I was talking about in the last post, and copied it into a Word doc so I could highlight everything that applied to me. Then the other day I started typing directly into the document, responding to each (or many) points with either specifics of how yes this is my story, or why no this isn't me at all, or why, uh, maybe something like that, or.... ANYWAY.

Basically it's just a process of stating This is Who I Am. This is Who I Am In Relation To This Particular Issue. It's a process not of trying to convince anyone that I am or am not a label, but a process of simply describing what I am and have been like, if that make sense. So I want to post it here for the record. The stuff in big old Times New Roman is what's copied directly from the above link. Things I identify with are highlighted. My notes are in a curly font that I'm not entirely sure will carry over to other people's computers, but anyhoo. Here's how I fit Samantha Craft's Females With Aspergers Syndrome Checklist:

Section A: Deep Thinkers

1. A deep thinker
2. A prolific writer drawn to poetry
3. *Highly intelligent
4. Sees things at multiple levels, including her own thinking processes
5. Analyzes existence, the meaning of life, and everything, continually
6. Serious and matter-of-fact in nature
7. Doesn’t take things for granted
8. Doesn’t simplify
9. Everything is complex
10. Often gets lost in own thoughts and “checks out” (blank stare)

Well, this goes without saying. This is pretty much the story of my life. Except for poetry. I do like poetry at times, but it’s not MINE the way prose is.

Section B: Innocent

1. Naïve
2. Honest
3. Experiences trouble with lying
4. Finds it difficult to understand manipulation and disloyalty
5. Finds it difficult to understand vindictive behavior and retaliation
6. Easily fooled and conned
7. Feelings of confusion and being overwhelmed
8. Feelings of being misplaced and/or from another planet
9. Feelings of isolation
10. Abused or taken advantage of as a child but didn’t think to tell anyone

As much as I hate to admit it, I do have a sort of naïve streak. A lot of these ones I’ve highlighted—it’s like I always feel “But…WHY?” when other people engage in such things. I don’t like lying, but I can’t claim that I’m a fully honest person—I do a lot of half-truth, just-not-saying-anything kinds of obscuring of the truth. As for being fooled or taken advantage of, I suppose I was more gullible when I was very young, but I got to be pretty skeptical pretty quickly. But as for number 8…yeah, pretty much dead on.

Setion C: Escape and Friendship

1. Survives overwhelming emotions and senses by escaping in thought or action
2. Escapes regularly through fixations, obsessions, and over-interest in subjects
3. Escapes routinely through imagination, fantasy, and daydreaming
4. Escapes through mental processing –I’m not sure what “escapes through mental processing” means if not another way to say daydreaming. Maybe it’s daydreaming for the more literal types, who might, like, solve complex math problems in their head to relax, like Meg Murry does or something. Me, my mental escapism is pretty well summed up with daydreaming.
5. Escapes through the rhythm of words –this seems more for the poets, too. I don’t really see it except if you consider music, but that’s really just music, not necessarily words.
6. Philosophizes, continually Um, see the “Deep Thinker” section?
7. Had imaginary friends in youth
8. Imitates people on television or in movies
9. Treated friends as “pawns” in youth, e.g., friends were “students” “consumers” “members”
10. Makes friends with older or younger females more so than friends her age (often in young adulthood) –I always made friends with people younger than me. Occasionally older people would claim me, too. But I felt more comfortable with younger ones.
11. Imitates friends or peers in style, dress, attitude, interests, and manner (sometimes speech) –I’ve picked up turns of phrase from my friends, but who doesn’t?
12. Obsessively collects and organizes objects –Less collecting—unless you mean hoarding—and more organizing, but the organizing has never been obsessive as much as thorough and methodical.
13. Mastered imitation –I wish. I’m decent at voices, but could be so much better!
14. Escapes by playing the same music over and over
15. Escapes through a relationship (imagined or real)—think this is a reference to my obsessing over crushes? I don’t think I’ve done the same with real relationships, though: those are too nervewracking.
16. Numbers bring ease (could be numbers associated with patterns, calculations, lists, time and/or personification)—unless THIS is the Meg Murry trait. I tell you, Meg was on the edge of the spectrum. Charles Wallace was quite thoroughly on the spectrum, but that’s neither here nor there.
17. Escapes through counting, categorizing, organizing, rearranging—ah, this would be where my style of organizing comes in. Not obsessive, but still soothing.
18. Escapes into other rooms at parties
19. Cannot relax or rest without many thoughts
20. Everything has a purpose

Section D: Comorbid Attributes

1. OCD (Obsessive Compulsive Disorder)
2. Sensory Issues (sight, sound, texture, smells, taste) (might have synesthesia) Sound sensitivity is the most pervasive. I don’t have any caveats on that—if you can think of a particular sensitivity someone could have toward sound, its me. In fact I was looking at a list of visual sensory issues and I did start nodding when I got to “fluorescent lights,” but then I realized it’s the SOUND of fluorescent lights that bothers me, not the light itself. Although I am sensitive to dark. I find myself trying to turn on lights that are already on sometimes just because I need more, and I will only willingly wake up AFTER sunrise. Okay, and anyway, texture is not as bad—I don’t have to cut the tags out of my clothes, and I LOVE jeans—but I have some weird quirks that only late in life have I realized are sensory-related. Like I could never stand face paint, and I still don’t wear makeup. Same with jewelry. It doesn’t matter what it’s made of, it still tickles in a way I don’t like. I used to always need to button button-down shirts all the way up, but I’ve gotten over that in recent years, as well as V-neck shirts—I think that must have been the same sensory thing, because they both involve exposure of the front of the neck and I got over both pretty much at the same time (during breastfeeding, when I was pretty much running around topless, so I guess it’s a matter of extremes). Yeah, some fabrics I just don’t like, either. Lace is pretty but it doesn’t feel good. And lenticular paper. Is not clothing, but I am SO repulsed by touching it, it’s weird. –I don’t have any out of the ordinary issues with smell or taste, much to my family’s despair—or is my FAMILY’S many issues with taste to MY despair? The latter.
3. Generalized Anxiety –aside from side effects from stimulants, I’m not really prone to clinical anxiety, but I was scared of everything as a child, and I always have a nagging “What am I forgetting NOW “ in the back of my head. The former seems autism-related, but the latter more ADHD. But in general demeanor, I tend to have an annoying LACK of anxiety to other people who feel I should be CARING more than I seem to be.
4. Sense of pending danger or doom
5. Feelings of polar extremes (depressed/over-joyed; inconsiderate/over-sensitive)
6. Poor muscle tone, double-jointed, and/or lack in coordination (may have Ehlers Danlos Syndrome and/or Hypotonia and/or POTS syndrome) –uh, I AM a complete klutz, but I don’t think it’s a quantifiable physical condition. No muscle tone or joint excuses.
7. Eating disorders, food obsessions, and/or worry about what is eaten—I do stress eat, but apparently not to the extent that psychologists consider a disorder
8. Irritable bowel and/or intestinal issues—a more recent development, so probably more related to middle age than autistic tendencies
9. Chronic fatigue and/or immune challenges –uh, maybe with the chronic fatigue? I’m always tired, but it’s not, like, OFFICIAL Chronic Fatigue.
10. Misdiagnosed or diagnosed with a mental illness—I most definitely do have chronic depression. Of course, it’s based in my deep-seeded self-esteem issues from always feeling “different” and never understanding why.
11. Experiences multiple physical symptoms, perhaps labeled “hypochondriac” –This is tricky, because I FEEL like I’m being a hypochondriac a lot. What does THAT mean?
12. Questions place in the world –again, see “Deep Thinker”
13. Often drops small objects –straightforward non-quantifiable-conditional klutz
14. Wonders who she is and what is expected of her
15. Searches for right and wrong –for both, yeah, again, “Deep Thinker”
16. Since puberty has had bouts of depression (may have PMDD)
17. Flicks/rubs fingernails, picks scalp/skin, flaps hands, rubs hands together, tucks hands under or between legs, keeps closed fists, paces in circles, and/or clears throat often –I don’t stim or have any other obvious tics, but I AM a habitual picker. Who often sits on her hands.

Section E: Social Interaction

1. Friends have ended friendship suddenly (without female with AS understanding why) and/or difficult time making friends –I had “friends who were fickle about our friendship” in elementary school, but from high school on my friends have been relatively loyal. I do have trouble opening up to making new friends, though. It’s always been a sensitive issue for me.
2. Tendency to overshare –Or, the exact opposite. Unless you mean in blog posts.
3. Spills intimate details to strangers –as I said. On the internet, who needs privacy?
4. Raised hand too much in class or didn’t participate in class –I was absolutely a Hermione in this case.
5. Little impulse control with speaking when younger --NOT
6. Monopolizes conversation at times --NOT
7. Brings subject back to self –I can kind of see this. I have a hard time actually HAVING a conversation if I don’t have a “here’s what *I* know about that” foothold to stand on
8. Comes across at times as narcissistic and controlling (is not narcissistic)
9. Shares in order to reach out –see that’s what I mean, I talk about myself, but it’s in an effort to be like “Does anybody else feel this way, too?”
10. Often sounds eager and over-zealous or apathetic and disinterested –both. Sometimes I’m afraid I’m going to be the first, so I counterbalance it with the latter. When I write, though, I tend toward the first part. When I talk, the latter.
11. Holds a lot of thoughts, ideas, and feelings inside –only comes out in writing. And even then, there’s still a lot inside that just doesn’t seem worth putting into words.
12. Feels as if she is attempting to communicate “correctly”
13. Obsesses about the potentiality of a relationship with someone, particularly a love interest or feasible new friendship –always. At least when I was younger. I’m kind of avoiding new relationships (friendships) these days.
14. Confused by the rules of accurate eye contact, tone of voice, proximity of body, body stance, and posture in conversation –I don’t know if this is it? I don’t think much about the rules, it’s just what’s comfortable to me. And not much is comfortable to me.
15. Conversation are often exhausting
16. Questions the actions and behaviors of self and others, continually
17. Feels as if missing a conversation “gene” or thought-filter
18. Trained self in social interactions through readings and studying of other people –I know my addiction to fiction pretty much thoroughly shapes my understanding of social interactions. Which, you know: small talk isn’t usually bothered with in fiction, because it doesn’t forward the plot. Which might be part of why I always thought “being in an adventure together” is a sure-fire way to make friends. It makes people REALLY talk, instead of noise-talk.
19. Visualizes and practices how she will act around others
20. Practices/rehearses in mind what she will say to another before entering the room
21. Difficulty filtering out background noise when talking to others—for someone with such a sensitivity to sound, I don’t really have any problem with background noise. I mean, in listening to people. Some background noises drive me crazy emotionally, but they don’t make listening difficult.
22. Has a continuous dialogue in mind that tells her what to say and how to act when in a social situation—has a continuous dialogue in mind period. My brain is always rehearsing thoughts and words, spinning a narrative out of whatever.
23. Sense of humor sometimes seems quirky, odd, inappropriate, or different from others
24. As a child it was hard to know when it was her turn to talk—as a CHILD? It’s funny this is often used to describe interrupting, but it also describes NOT talking because you can’t figure out when it’s okay for you to speak. And then the conversation changes and what you had to say doesn’t relate anymore, anyway. Yes, this is an ongoing thing for me.
25. Finds norms of conversation confusing
26. Finds unwritten and unspoken rules difficult to grasp, remember, and apply

Section F: Finds Refuge when Alone

1. Feels extreme relief when she doesn’t have to go anywhere, talk to anyone, answer calls, or leave the house but at the same time will often harbor guilt for “hibernating” and not doing “what everyone else is doing”
2. One visitor at the home may be perceived as a threat (this can even be a familiar family member)
3. Knowing logically a house visitor is not a threat, doesn’t relieve the anxiety –see, I never feel threatened by visitors, usually I’m happy about them, but I get anxious about what I should be doing. Do I need to try to engage them in conversation CONSTANTLY? Is it okay for me to go read or check twitter while they’re here, even if they’re occupied with the kids or something? I’m awkward about it.
4. Feelings of dread about upcoming events and appointments on the calendar
5. Knowing she has to leave the house causes anxiety from the moment she wakes up
6. All the steps involved in leaving the house are overwhelming and exhausting to think about—no. But it’s amazing how consistently I can’t find my keys, even when I make an effort to keep them in one place—that’s the ADHD.
7. She prepares herself mentally for outings, excursions, meetings, and appointments, often days before a scheduled event
8. OCD tendencies when it comes to concepts of time, being on time, tracking time, recording time, and managing time (could be carried over to money, as well) –HAHAHAHAHAH no. How about “No concept of time whatsoever”? This is the ADHD again.
9. Questions next steps and movements, continually
10. Sometimes feels as if she is on stage being watched and/or a sense of always having to act out the “right” steps, even when she is home alone –OMG OTHER PEOPLE DO THIS. I often have internal conversations with imaginary observers, explaining why I’m doing what I’m doing. Often I go off on imaginary tangents about the music I’m listening to, but that’s beside the point.
11. Telling self the “right” words and/or positive self-talk (CBT) doesn’t typically alleviate anxiety. CBT may cause increased feelings of inadequacy. –I’ve gotten pretty good at identifying irrational thoughts and explaining why they’re such, but, yeah, doesn’t really change the situation.
12. Knowing she is staying home all day brings great peace of mind
13. Requires a large amount of down time or alone time
14. Feels guilty after spending a lot of time on a special interest
15. Uncomfortable in public locker rooms, bathrooms, and/or dressing rooms –yo, I was a band and musical theater kid. No shame.
16. Dislikes being in a crowded mall, crowded gym, and/or crowded theater –how about “in a crowd” period? It’s not so bad if I can stay in one place doing my own thing—if the place doesn’t have other unpleasantnesses, like smoke or noise or air conditioning vents—I mean, nothing wrong with sitting in ones seat at a crowded theater-- but navigating the crowd is the hard part.

Section G: Sensitive

1.     Sensitive to sounds, textures, temperature, and/or smells when trying to sleep
2.     Adjusts bedclothes, bedding, and/or environment in an attempt to find comfort
3.     Dreams are anxiety-ridden, vivid, complex, and/or precognitive in nature
4.     Highly intuitive to others’ feelings
5.     Highly empathetic, sometimes to the point of confusion
6.     Takes criticism to heart
7.     Longs to be seen, heard, and understood
8.     Questions if she is a “normal” person
9.     Highly susceptible to outsiders’ viewpoints and opinions
10.                   At times adapts her view of life or actions based on others’ opinions or words
11.                   Recognizes own limitations in many areas daily, if not hourly
12.                   Becomes hurt when others question or doubt her work
13.                   Views many things as an extension of self
14.                   Fears others opinions, criticism, and judgment
15.                   Dislikes words and events that hurt animals and people
16.                   Collects or rescues animals (often in childhood)
17.                   Huge compassion for suffering (sometimes for inanimate objects/personification)
18.                   Sensitive to substances (environmental toxins, foods, alcohol, medication, hormones, etc.)
19.                   Tries to help, offers unsolicited advice, or formalizes plans of action
20.                   Questions life purpose and how to be a “better” person
21.                   Seeks to understand abilities, skills, and/or gifts

--this whole section just screams out “me,” doesn’t it. ME. THOROUGHLY ME. The exceptions? I’ve never really been an animal person—WHICH FOR CRYING OUT LOUD doesn’t mean I DISLIKE animals or aren’t sensitive to their feelings, I just don’t have any undue ATTRACTION to them, either. And I don’t know if the environment is just SO FULL of contaminants that subtle changes don’t make much of a difference or what. There are some medications that don’t seem to do anything AT ALL, though others—like stimulants give me anxiety, and alcohol puts me to sleep. I don’t know. And 19 just seems way too extroverted to me.

Section H: Sense of Self

1. Feels trapped between wanting to be herself and wanting to fit in
2. Imitates others without realizing it
3. Suppresses true wishes (often in young adulthood)
4. Exhibits codependent behaviors (often in young adulthood)
5. Adapts self in order to avoid ridicule—I mean, this is the crux of number 1, too. I refused to not be me. But at the same time I felt very conscious of how “me” wasn’t “normal.” So I guess I did adapt myself in the sense that I withdrew a lot. Instead of speaking up and getting laughed at, I just stopped trying.
6. Rejects social norms and/or questions social norms—and I felt like such a rebel
7. Feelings of extreme isolation
8. Feeling good about self takes a lot of effort and work
9. Switches preferences based on environment and other people
10. Switches behavior based on environment and other people
11. Didn’t care about her hygiene, clothes, and appearance before teenage years and/or before someone else pointed these out to her—it is nice to know that this is actually linked to my autistic tendencies, somehow. I don’t know why that’s a relief and other things aren’t, but, who knows.
12. “Freaks out” but doesn’t know why until later—no, if I freak out, I’m pretty sure why.
13. Young sounding voice –this is a thing? I mean it’s not just me? Cool!
14. Trouble recognizing what she looks like and/or has occurrences of slight prosopagnosia (difficulty recognizing or remembering faces) –I often have trouble linking NAMES and faces, but I can usually tell a familiar face.
15. Feels significantly younger on the inside than on the outside (perpetually twelve) –I love that “twelve” is the age mentioned here, because that’s it. TWELVE. I mean, obviously I’m an adult, I know I’m not twelve, but…. I was going to write about turning 40, because I still don’t FEEL middle aged. I know I AM, and my body sure acts it, but it’s like, “Oh yeah, 40, whatever, well, when I grow UP I’ll…”

Section I: Confusion

1. Had a hard time learning that others are not always honest
2. Feelings seem confusing, illogical, and unpredictable (self’s and others’) –I like to think I have a pretty good understanding of how feelings work, actually.
3. Confuses appointment times, numbers, and/or dates –yeah, gotta love those executive function disorders. This is ADHD, too. WHICH DO YOU HAVE? Both, already, just both. It doesn’t matter what the label is!
4. Expects that by acting a certain way certain results can be achieved, but realizes in dealing with emotions, those results don’t always manifest –I don’t really understand this one, so I’m going with “no.”
5. Spoke frankly and literally in youth –frankly, yes, literally, not so much.
6. Jokes go over the head –I mean not CONSISTENTLY, but I wrote a whole article about this once.
7. Confused when others ostracize, shun, belittle, trick, and betray—again, I’m just like, WHY? Why not be nice? Isn’t that better for everybody?
8. Trouble identifying feelings unless they are extreme –I know I just said I like to think I understand feelings pretty well, and I do, but it IS hard to determine how I feel about something if the feeling isn’t SCREAMING at me.
9. Trouble with emotions of hate and dislike
10. Feels sorry for someone who has persecuted or hurt her
11. Personal feelings of anger, outrage, deep love, fear, giddiness, and anticipation seem to be easier to identify than emotions of joy, satisfaction, calmness, and serenity –nah, I’d say the opposite, actually. Pairs up with 9 and 10. And 7. Negativity in general, I’m uncomfortable with, and so they’re HARDER to admit to by identifying.
12. Difficulty recognizing how extreme emotions (outrage, deep love) will affect her and challenges transferring what has been learned about emotions from one situation to the next—I don’t understand this one either. I do have trouble learning from mistakes, if that’s related.
13. Situations and conversations sometimes perceived as black or white
14. The middle spectrum of outcomes, events, and emotions is sometimes overlooked or misunderstood (all or nothing mentality) –nah, I’m all about shades of gray, 13 and 14. This one is clearly Sammy, though.
15. A small fight might signal the end of a relationship or collapse of world
16. A small compliment might boost her into a state of bliss—I wish! To balance out 15! But that’s normal, it always seems like, for anybody, one bad review will cancel out 20 good ones, and so forth.

Section J: Words, Numbers, and Patterns

1. Likes to know word origins and/or origin of historical facts/root cause and foundation –like, who doesn’t? (Kidding. I know there’s lots of boring people in the world).
2. Confused when there is more than one meaning (or spelling) to a word –uh no, that’s what makes it fun.
3. High interest in songs and song lyrics
4. Notices patterns frequently
5. Remembers things in visual pictures
6. Remembers exact details about someone’s life –I mean, it depends on the person, and the details. How many details are we talking about, anyway?
7. Has a remarkable memory for certain details
8. Writes or creates to relieve anxiety—HEY LOOK, IT’S ME AGAIN
9. Has certain “feelings” or emotions towards words and/or numbers
10. Words and/or numbers bring a sense of comfort and peace, akin to a friendship
(Optional) Executive Functioning & Motor Skills This area isn’t always as evident as other areas
1. Simple tasks can cause extreme hardship
2. Learning to drive a car or rounding the corner in a hallway can be troublesome –I’d say “no,” but it did take me three tries to pass my driver’s test, and, um, yes, I do walk into walls frequently.
3. New places offer their own set of challenges—what does this mean?
4. Anything that requires a reasonable amount of steps, dexterity, or know-how can rouse a sense of panic—not panic. Lack of ability, definitely. But little anxiety attached.
5. The thought of repairing, fixing, or locating something can cause anxiety –no I like repairing things, I don’t know what you’re talking about.
6. Mundane tasks are avoided
7. Cleaning self and home may seem insurmountable
8. Many questions come to mind when setting about to do a task –um, yes?
9. Might leave the house with mismatched socks, shirt buttoned incorrectly, and/or have dyslexia and/or dysgraphia –the latter is J and M, not me, but I am scatterbrained and may miss things like the first part.
10. A trip to the grocery store can be overwhelming –When I’m in a really crowded grocery store, I notice I shrink into myself. I focus on getting what I need to get and try to block everything else around me out. So, maybe it is overwhelming, but I’ve learned to deal with it?
11. Trouble copying dance steps, aerobic moves, or direction in a sports gym class
12. Has a hard time finding certain objects in the house but remembers with exact clarity where other objects are;/ not being able to locate something or thinking about locating something can cause feelings of intense anxiety (object permanence challenges) (even with something as simple as opening an envelope) –again with the anxiety, list maker! I feel you may be conflating your anxiety problems with your autistic tendencies. But the first part? Clearly me. That’s an ADHD thing, too. The overlap between ADHD and autism could be another conflation…or it could just be Don’t Try So Hard to Label Things -itis.