Misunderstood, but Not Alone

I’ve been feeling really “messed up” lately. Those feelings of not being good enough, of saying and doing the wrong things, of absorbing the negative feelings of the people around me, of being misunderstood. That last one has been especially frustrating.

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I’m trying online counseling.  I only started a few weeks ago, and I’m not sure how it’s going.  She sent me a ton of worksheets about unhealthy thought patterns, which of course caused my brain to over-think and over-analyze and be overly-defensive of itself.  The topic that has been most frustrating has been the encouragement to try online dating again.  After acknowledging that I may be traumatized by past experiences, she added, “Suppose your front door hit your hand, and caused a lot of pain; will you refuse to go through it again?”

Yeah, I’d go through the door again.  But what if slamming my hand in it happens repeatedly?  It would then be logical to be cautious about using that door.  I’d go through the back door, or climb through a window, or just stay inside as long as possible.  Or try to replace the door or figure out why the hell I keep slamming my hand in it.

A rocking chair blocking one of the doors I could totally use instead of the front door.

I also explained that I live in a rural area, and most of the online matches have lived hours away.

Then yesterday I mentioned this conversation to a co-worker, who immediately jumped into solutionizing-mode and was all, “Yes, you should get back on the horse!  Get out and have more experiences, to learn what you really don’t want, blah blah blah. . . ”

I wish I could get them to understand that this is HARD.  Meeting new people is not FUN for me.  Online dating is not some magic bullet, where if I just sign up and put myself out there again, great guys will line up wanting to get to know me.  That’s not how it works.  I really appreciated the timing of Mayim’s video this week:

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It’s been a rough week, internally at least.  Sleep-deprived, anxiety-ridden, and depressed, I tried to post something positive on social media.  And then there was a situation where I was told I’d hurt someone’s feelings, which I never want to do.  I reached out to the person and apologized, and I think everything is ok, but that kind of thing is exhausting.

I keep forgetting how draining social media is, and that I need to take another break from it.  Getting an Apple Watch has helped me a little – I can take a walk and still track my distance and listen to music without having a device in my pocket that I will be pulling out to check the feeds.  I need to be filling my time and soul with better things, even if that means sitting still and looking at the trees.  I am trying to be better about reaching out to people directly, instead of just scrolling on Facebook when I’m feeling lonely.

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So this morning, as I was sitting in my comfy chair and drinking my coffee, I glanced over at the stack of books on the radiator beside me.  And I reached for Samantha Craft’s Everyday Aspergers, which is a collection of her blog posts.  My bookmark was on the page for “Ten Traits (Females with Aspergers)”  – you can read it here.

Re-reading a description that matched so much of my experience was comforting.  I continued reading the next several pages, smiling at thoughts that sounded like my own, empathizing with struggles that were different in specifics but familiar to me in this fallen world.  It reminded me that I am not alone in the way I experience the world.  I’m not alone in the ways I struggle.  I’m not alone in being frequently misunderstood. I’m not alone in being confused by neurotypical people.  I’m not alone.

Perfectionism and Performance Anxiety

I’m frustratingly busy, so I’ll try to keep this one short. But being so busy also has me feeling very anxious. And with the thoughts swirling, I thought it might help to write some of them out.

Just the other day I was talking with someone at work about the concept of “performance anxiety,” that unpleasant feeling we get when someone is watching us do something (or the anxiety leading up to that event).  I recalled what I was taught in school, about how basketball players will practice free-throws until the movement is automatic, like a machine.  That way, when they are standing in front of the crowd and under pressure, their performance is less likely to suffer from the situation.

Today I was thinking about how the social deficits of being autistic can cause an almost-constant performance anxiety whenever I’m around people.  I know that a lot of this, for me, comes from an unhealthy “fear of man” – that is, caring too much about what people think of me, and getting identity/value from that.  But at the same time, I need to know if what I’m doing or saying is having negative consequences.  I have a lifetime of memories of messing up.  I’ve unintentionally hurt feelings, caused people to think I was arrogant (instead of insecure and shy), made assumptions that led to damaged friendships.  This evening, I remembered reading a blog post about social anxiety and autism; I just looked it up, and once again she says so much good stuff I’ll recommend you go read it instead of trying to write my own version here.  For example:

When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

-Cynthia Kim, Musings of an Aspie:My Anxiety is Not Disordered

Taking college classes again, I’ve been frustrated by my desire for perfectionism.  I keep reminding myself that missing questions or losing points is an opportunity to learn, but I still want that 100%.  I’ve always been told how smart I am, and that was a big part of my identity – so the desire for good grades goes deeper than just wanting a good number on my resume so I can get a better job.  It means I spend too much time on assignments, worrying the whole time about if I’m doing it right and doing enough.  Like I said, it’s very frustrating.  (Oh, and this “perfectionism” topic could easily be a separate blog post.  Of course, there’s one worth reading over at Musings of an Aspie).


Another area where the perfectionism and performance anxiety are driving me nuts is my photography business.  I’m about ready to call it quits.  I get so anxious before the shoot – will I be able to get the shots they want?  And then there’s the viewing – will they like the shots?  And there’s the sales component, where I have to deal with the uncomfortable topic of money and asking them for it, and I have to talk myself up.  Oh, and the editing.  I spend too much time trying to “perfect” images before I even know which ones they will want (of course, it’s hard for them to know what they want if they can’t see how beautiful it will be in the end).  And even in applying edits I’m constantly doubting myself and anxious.  Ugh.  I do really love being able to give people beautiful portraits, especially of their kids.  I’m looking forward to getting a new career that pays all the bills so I can go back to giving away photography.

Speaking of giving away photography – I’m going to combat the negative feelings by ending with this photo.  At the totally amazing Jars 20 Celebration Weekend in Nashville, I gave the guys a gift.  I took a picture of some of Dad’s vinyl records, with my Jars of Clay albums mixed in.   They liked it 🙂

Misunderstandings

I recently had a phone conversation with a new acquaintance, who pulled the “You think you’re autistic?  I don’t see it” line.  I laughed and said, “You don’t know me well enough yet,” instead of saying, “Wow, I’ve spent nearly 30 years pretending and practicing to be normal – glad I was able to fool you – on the phone – for a single hour!  How dare you – you who say you haven’t even talked with an autistic person before – try to tell me who and what I am, as though you – who don’t know me AT ALL – know me better than I know myself?”  It was the first time I’ve had to deal with that kind of dismissive attitude, but then again it was also the first time I have explained my self-diagnosis to someone who hasn’t actually known me for a while.

(here are “20 Things Not to Say to a Person with Aspergers“)

     Then the drama struck when we were later texting instead of talking, and I was confused by something he said, and responded in a way that he found hurtful.  I couldn’t even tell which of my comments could be taken as hurtful, so I had to ask what it was I said.  After the conversation, I was feeling really upset over yet again failing at human interaction, but at the same time I was pleased to see growth in my self-awareness and ability to express it.  I think reading other Aspies’ writings and working on my own has helped with that.

Here were some of my shared thoughts:

  • I don’t know how to take things when I don’t know someone well.  It can be especially hard when texting.
  • When I don’t know what to say, I don’t say anything.  Sometimes it’s hard to figure out my thoughts and put them into words, too.  Especially when I don’t know what the person I’m talking to is thinking, so I don’t know what I should even be responding to.
  • Like you, I pull away from pain.  And that includes pain unintentionally inflicted on others.  It reminds me how often I misunderstand and am misunderstood.  And if I’m gonna hurt people, I’d rather just sit alone with my cat.
  • And it takes me time to get to know someone and know how to interpret all they say and do.  Until then, interactions can be confusing and frustrating for me.
  • I’m not saying I’m never understood, I’m just saying that understanding others and being understood is a frequent struggle for me.

Today I stumbled upon this post by Cynthia Kim at Musings of an Aspie, “The Seductive Illusion of Normal.”  This passage really fit how I’m feeling today:

I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.

This is when the wish to be normal sneaks up and grabs me.

I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.

It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.

And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.

Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.

 

Recently I also read “The Isolation of Aspergers.”  Even though I don’t fully identify with most of her words, I do share many of those feelings.  There’s a lot of loneliness.

Crisis of Faith

For the last several months I’ve been experiencing a deep crisis of faith.  Not my Christian faith, but rather my faith in what I do as a TSS.  For those of you unfamiliar with the TSS position, it stands for Therapeutic Support Staff.  Most of the children served by my agency (and all the kids that I have worked with) are on the autism spectrum, though there are other diagnoses/issues that can cause a recommendation for services.  Here’s how it works: after an intake evaluation, a child may get a BSC, who is a master’s level clinician.  The BSC consults with the caregivers and school (if relevant) and develops a treatment plan full of objectives and interventions.  Then the TSS, a bachelor’s level therapist, implements the interventions (while teaching caregivers/teachers to use them) and collects data and documentation (the bane of my existence).

Some tools of the trade - computer for documentation, a variety of ear protection, visuals, fidget toys, a pencil for writing a flexible visual schedule, highlighter to color in a smiley chart.

Some tools of the trade – computer for documentation, a variety of ear protection, visuals, fidget toys, a pencil for writing a flexible visual schedule, highlighter to color in a smiley chart.

I worked for another agency for a year and nine months before reaching burnout point and moving home, and I have worked for this agency just as long.  I’ve always been really good at my job – at least, especially good at the working-with-the-kids part, because I *get* them and can tell what’s going on with them before most other adults in their lives.  I always figured it was because I have empathy for autistic kids because of my cousins, and because I’m a highly sensitive person myself, and because I’ve studied a lot about autism.  But last summer when I realized I have Asperger’s, I started to not only empathize with and understand the kids but also identify with them.  And in many ways that has made my job much harder.  One day I exclaimed in frustration, “I feel like I’m disguised, helping those adults to oppress my people!”  My mom chuckled, but it’s a real feeling.

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A big component in the development of my Crisis of Faith was reading a few blog posts as I was exploring my own self-diagnosis.

 

[Warning – this post is going to involve a lot of “recommended reading.”  I’ll try to summarize the key idea of each link I post, but they are all worth reading.]
One of the first was “Quiet Hands.”  As I read this post, my heart sank.  How many times have I, following the leads of the adults in charge at school, tried to suppress my clients’ stims?  Sure, I’ve suggested things like fidget toys as alternatives; and sure, most of my main client’s hand movements are accompanied by disruptive sound effects (think Angry Birds; that’s the game he’s usually playing in his head while stimming with his hands).  But I’ve also used this visual:

Which brings me to the next blog, which I think is actually where I saw the previous link.  “On Failing Kindergarten,” by Alyssa on Yes, That Too. I spent all last year, and most of this one, watching the staff in autism support rooms trying to make kids follow these rules.  I’ve felt frustrated with them making a kid sit with his feet on the floor in front of him, when the kid is trying to sit on his foot or sit cross-legged in the chair- like I do.  I’m so uncomfortable with conflict and speaking up. . . if I’m in a situation where I don’t think my advice will be heeded I am unlikely to offer it.  But I’ve tried to muster courage to be a sort of advocate when I can.  In that specific example I did finally say, “I have trouble sitting on these hard chairs; have you tried one of those squishy things they can sit on?”  (I’ve seen them at the school.)  The teacher shrugged it off with a, “We’ve tried everything” (not true) and resumed firmly demanding he sit “right” in the chair, threatening him with the weighted lap pad instead of offering it as a good thing.

Situations like that are difficult, because I am a guest in these classrooms and it is not my place to tell the teachers what they’re doing wrong. . . I’m there to explain interventions that work for my client and model them.   And like I said, I am uncomfortable.  I’m too afraid to say things that will cause discord or bad feelings, since I have to be around these people every day.  I was yelled at once at work while trying to implement an intervention and nearly cried; I was terrified of seeing the person again.  Although I tried to act normally around them I was also very wary.  So I have the internal conflict of watching treatment I strongly disagree with but being afraid of trying to change it.

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Here is an example of what it’s like to *see* what the people in charge do not see when an autistic student is acting out.  Her writing powerfully conveys the feeling of heartbreak and helplessness I often feel in such situations. – “What I Saw” by AutisticChick

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Alyssa
Alyssa
Alyssa
On Failing Kindergarten

I’ve only read a few of Matt Walsh’s posts and I don’t agree with everything he says. But I really liked most of what he says in, “Help, doc, I’m bored by boring things. I think I’ve got the ADHD!”  I agree that medication is over-prescribed, but I think he’s a little too strongly anti-meds (for an example of a family who dramatically benefits from meds, check out the BBC documentary Living with ADHD).
Here’s the main point of this post summed up in two quotes:

What if — this is a big IF — what if people are all, like, different?

Hold on.

Don’t stop reading yet. Seriously, think about it. What if there ISN’T actually some preordained mold of behavior and thought in which we’re all supposed to fit? What if it’s OK for some people to be a certain way, while others are another way, and still others are an entirely different way? What if some people are active, and some people aren’t; some people are creative, and some people aren’t; some people have a lot of energy, and some people don’t; some people are daydreamers, and some people aren’t? What if — again, HUGE if — but what if we tried to find a place for the unique qualities of all men and women, rather than attempting to chemically eradicate entire personality types simply because they don’t gel with our artificial societal constructs?

What if we stopped trying to make our kids “normal,” and instead encouraged them to be exceptional?

and:

Could it be that our kids are distracted because they’re surrounded by distractions? Could they be overstimulated because they’re surrounded by stimulation? Could they have trouble paying attention in school because school is tedious and boring?

I really loved that second quote.

I also read one of his rants about public schooling and homeschooling; again, I don’t agree with everything he says, but he made points that resonated and further weakened my already shaky faith in the public school system.  And let me tell you, I have had the privilege of working with some amazingly wonderful educators.  Ever since I was a child I have had respect and affection for good teachers, and it continues to this day.  From what I’ve seen, the school I mostly work in right now is a great school, at least by the standards of the schools I have seen or attended.  However. . . more and more I’m seeing how it really doesn’t work for everyone.  I see kids falling through the cracks, because even the best teachers are only human and have too much on their plates (crowded classes, heavy workloads, lack of parental involvement, etc).  I cannot emphasize enough how much I respect most of these teachers; I honestly cannot think of a single negative thing to say about my client’s second grade teacher, for example.  But when I’m sitting there trying to get this kid to stop his noisy stimming while the class is taking turns reading, I have to wonder, “Why are we here?”  He pretty much never gets anything out of the lessons in the gen-ed classroom; he learns and works much better one-on-one.  Most of our time in the gen-ed room is spent trying to keep him quiet and on task; if he doesn’t have a specific task in front of him like a worksheet it’s rough.  So why is he there?  To try to learn how to sit still and quiet and listen to group instruction?  That leads to the next question – Why?  Does he really need those skills?  I mean, what kind of additional education is he going to seek in the future, and what kind of job?  When I think about it, most jobs don’t involve the kind of “skills” he’s supposed to be learning in school.  I am all for him spending time with the gen-ed kids, not only for his benefit but for theirs.  We didn’t have any kids like him in my class growing up.  In fact, I have so little exposure to individuals who have labels like ID that when I first started going to a Life Skills classroom with another client I felt VERY uncomfortable around those kids, much to my shame.  But the kids in my younger client’s class – they accept him.  They are willing to help and prompt him and pester him for high-fives.  I’ve seen bright and social young boys give up doing something “normal” with their friends at recess to interact with my client and help him practice things like tossing and kicking a ball – and this without any adults suggesting they do so.  In those moments I feel hope for the future.

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So, what are the next steps?  Well, my first personal step is switching gears and going back to college to study Information Sciences and Technology.  After we discovered my place on the spectrum, my mom encouraged me to look at career fields that would be a better fit for someone with Asperger’s.  I start classes next month and will continue working as a TSS part-time for as long as I can manage doing both.  Another step has been slowly “coming out” at work.  I didn’t make a big formal announcement, but if I’m chatting with someone about a student’s specific behavior I will say something like, “I can really understand why he has a hard time with the noise in the cafeteria.  I started wearing earplugs in there!  I’ve come to realize that if there had been more awareness when I was a kid I would have been diagnosed, myself.  Loud noises like that are overstimulating to me and make me feel really anxious.  Do you think he’d tolerate some kind of ear protection for in there?”  I don’t make a big deal about it, but I want them to know I’m giving advice not just as a trained TSS but as an autistic person.  An also-autistic person speaking for and defending the rights of these autistic kids who don’t yet know how to speak up for themselves.  Which leads me to a third step – promoting true “Autism awareness” by encouraging autistics to raise their voices and NTs to start listening.

 

 

 

“You make me feel disabled. Yes, you.” by Pensive Aspie

“You make me feel disabled. Yes, you.” by Pensive Aspie

I’m typing this and I haven’t even finished reading the post – I like it that much.

 

My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.

Yep.

Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter.  Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.

YES.

Because sensory issues play a big part in our lives, we often prefer specific foods.  Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries.  I am an adult.  I know what I like and what I don’t.

THIS.

I finished reading it and wanted to shout, “Amen!” and show it to everyone I know.  Here’s my first step:

http://pensiveaspie.wordpress.com/2014/04/19/you-make-me-feel-disabled-yes-you/

Speechless

“Sticks and stones can break my bones, but words can never hurt me.”

Bull****.

There are many words that still haunt me.  Taunts about my weight that started in late elementary school.  Words of social exclusion from the mean girls.  Dismissive remarks from relatives.  A girl I considered my best friend suggesting I just kill myself. (I pretty much remember the exact phrasing of that one.)

I remember talking to a new friend in high school and explaining that my group of girl friends didn’t care what I had to say.  “Oh, I’m sure you’re just imagining things,” he said.  “No, I had the feeling that they didn’t want to hear me, but then they actually said, ‘Schenley, shut up; we don’t care.'”  I thought that was pretty convincing proof that my intuition had been correct.  I don’t remember him having a good response to that.

I recall a period there in high school where I felt like I just couldn’t win.  If I was in a good mood and talkative, they would yell at me for being annoying.  If I kept quiet, they would yell at me for being depressed.  It was only in the past few days that I started to realize the direction of the correlation – sure, sometimes I was quiet because I was depressed, but I think more often I was depressed because I was quiet.

On a recent episode of The Big Bang Theory, Sheldon is telling Amy about his “Which new game system to buy?” dilemma in a very animated and agitated fashion.  Poor, patient Amy just wants him to shut up and pass the butter, and in exasperation feigns interest.  Despite her doing this extremely obviously, Sheldon is oblivious and just gets more enthusiastic.  Sometimes I wish I could be as oblivious as Sheldon.  Instead, I have learned to pick up those social cues of disinterest and annoyance.  And when people aren’t interested, I can generally shut up.  But this comes at a cost.

I’ve started to notice that this constant tongue-biting is truly damaging to my mood.

I’m suppressing my own thoughts and feelings. I’m telling myself they aren’t worth sharing.  When these are feelings of excitement or joy, that is pretty effective at squelching the happiness.

As an Aspie, I have special interests that bring me joy.  I love to spend time on/with these things, I love to think about them, I love to talk about them.  The problem is, other people generally don’t find them as interesting.

It hurts when others aren’t interested in something I’m passionate about.  I mean, if the person is someone you care about, shouldn’t you at least listen out of care for the person, if not the topic?  Whenever someone shows a genuine interest in what I’m talking about I can feel myself light up.  Like when a friend’s husband asked follow-up questions about how paper-pieced quilting works instead of just nodding and smiling.

free pattern available at Fandom in Stitches

free pattern for the “Project of Doom” available at Fandom in Stitches

It’s great when I have someone to share an interest with, when I’m allowed to be excited and they’re excited in return.  My dad and I can rhapsodize about music and movies (and script lines at each other – yay acceptable echolalia), my sister and I can ramble on about our Sims or gush about Glee, a friend and I can quote The Office to each other and even went to The Office Convention in Scranton years ago, etc.  I treasure those relationships and moments when we can be ourselves and share each others’ joy.  There’s even research to back up the idea that sharing joy with others is a good thing.

Other times I keep my mouth shut because I’m feeling down and don’t want to dampen the other person’s mood, or what I have to say is nothing new and I feel like a broken record and feel bad for the other person who’d have to hear it.  I suck at lying, so I just don’t talk.  But that doesn’t help me feel any better.  And in those moments I long for someone to reach out to me and be honestly willing to listen.

Loneliness


Loneliness, loneliness, it won’t last forever
Happiness, happiness, wait in line
Every time I look in the mirror I’m in the shadow of doubt. . .

All I want is peace like a river
Long life of sanity,
Love that won’t leave too soon
Someone to pull out the splinters. . .

-Jars of Clay, “Reckless Forgiver” –Inland

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I started this post weeks ago, but then I put off finishing it.  It’s a painful topic, and I was having a hard time organizing my thoughts without rambling.  But I don’t like leaving things unfinished, so here I go.

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I’ve been feeling lonely lately.  Not that it’s a new thing; it kinda comes in waves.  I think this latest time was really instigated by having free time again.  For a while I was chatting online daily with a friend, and when that ended it was sad and a hard change in routine, but I became so very busy and stressed that I simply didn’t have time to feel lonely.  I was too busy with my work schedule, and a busy season of my photography business, and the craziness of trying to make Christmas gifts and visit people.  But all of that activity cut off abruptly. . . and although I was thankful to have my down-time back, it also increased my feeling-down time.

My thoughts for this post have been all over the place.  Do I go into the feelings of childhood loneliness?  Do I explore the ways I made friends who lasted?  Do I share the heartbreaking times where I failed to make friends in new places?  Where do I begin with all of this?

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Since graduating from college I have moved a lot.  I moved 7 times in 6 years, in fact.  Have I mentioned that change is hard? (Rhetorical question – I did).   I was hired as a nanny and then had families’ financial situations change, or I moved in with people knowing the situation had to be temporary.  I moved back in with my parents a few times when my work/living situation had to change, because they are awesome and supportive.  Each time I moved to a new place I really did try to meet people.  I’d find a good church and then step outside of my comfort zone to go

to a young adult ministry event, or join a women’s Bible study, or attend a small-group event to join a group.  And I met some really nice people this way. . . but I never made a real friend.  And I don’t know why.  It seemed like most of them already knew each other, had a history, had their own relationships and busy lives.  They were friendly to me, but I never felt truly initiated into the group, and was rarely invited to do things outside of the scheduled event.   And I’ve never known how to get in.

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Looking back, it seems like I needed an insider to pull me in.  Junior high sucked.  I’m sure eventually I’ll write more about bullying, but for now I’ll just say that those years were the worst of my life.  I hated going to lunch in junior high (and I love to eat), but I didn’t know how to change where I sat.  Then one day my badminton partner in gym class invited me to sit with her at lunch.  I long referred to her as “my angel” for rescuing me in that way.  By inviting me to eat with her, she provided me with the “references” I needed to get in with a new group of girls.  This group (though a bit fluid over the years) remained my social group at school until graduation.  While far from perfect, we did share a lot of fun times, and for that I am thankful.  In fact several of us got together for a private “un-reunion lunch” 10 years after graduation (I had *zero* interest in attending my class reunion); I truly enjoyed seeing them again after so many years.  Yet at school, especially at the end, I often felt lonely, even within this group.

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I’m not really sure at what point in my life I started to feel different.  I felt different from the other girls because I was a tomboy.  Everyone always called me “smart” and it set me apart – when I got older it made me sad that most people would sign my yearbook with something like, “You’re so smart!” instead of something about being friends.  In high school I felt different because I wasn’t dating (not my choice) or interested in partying (my choice based on faith).

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I loved the times I had a best friend.  If I didn’t, or if they weren’t around, I always dreaded the times at school where we were directed to pick a partner or group.  I knew that if the number of friends wasn’t right (3 of us and it was 2 to a bus seat, for example) I’d probably be the one left out.

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In the collection of stories/essays/poems Women from Another Planet?, Jane Meyerding tells a story that really resonated with me.  She writes about going to Girl Scout Camp one summer, and how she participated and enjoyed every day there.  It wasn’t until the overnight camp-out that she realized something:

The other girls had become friends with one another.  Alone there, with no adult present to direct us, they chatted and whispered and laughed and interacted with seamless ease.  How did they know what to say?  They weren’t talking about anything, and yet they talked constantly.  My conversation was limited to specific subjects, not including anything as nebulous as girltalk or smalltalk.  Moreover, they seemed to know each other in a way they didn’t know me — and I certainly didn’t know them.  I had been with them as much during the summer as they had been with each other.  I had done everything they had done (as far as I could tell). And yet I was a stranger there.  The only stranger in the tent.  I realize now that one or more of the other little girls in that tent may not have been happy and socially successful.  But all of them knew how to put on the act.  They may have felt lonely.  They may have felt inadequate.  But they knew–even at eight years old–how to behave in a social situation.
(p 158, 159)

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It’s painful to not understand why I’m not accepted as a friend at times.  The people who become my close friends all tell me I’m a great friend, but most people must not see what they see I guess.  I remember one time (that I will keep intentionally vague).  I was in a room with a girl I thought I had a good relationship with, and she stormed out of the room appearing very upset.  I had a feeling she had gone to talk to girls in another room of the house, and since I had a question for one of those other girls I went over several minutes later.  Sure enough, the first girl was there, and it was clear she had been crying.  Later she mentioned it within another group context and I asked about it, and she explained she had fought with someone.  I never knew why she chose to seek out the other girls instead of talking to me, since I was right there.   But it hurt.

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On page 30 of Aspergirls, Rudy Simone says:

We flourish much better in an environment where the emphasis is on academic achievement and not socializing.  Of course we need to learn to socialize, but through shared interests with like-minded individuals, not by being thrown to the lions.  Emotionally, we require an atmosphere of tolerance and non-judgement.

This was definitely true for me, going to Grove City College.  People were actually nice to me.  It was so weird, but wonderful. And one of the best things that happened there began on the first day.  The college organized “mentor groups” to help us get settled in and meet each other.  I entered that first day with the determination to try harder to make friends, and I was acting much more social and outgoing than was normal for me.  But when I sat down in the grass with my mentor group I saw an individual who looked as shy and uncomfortable as I truly felt.  We were both wearing Christian rock t-shirts, which gave me a chance to strike up a conversation.  I put forth a little extra effort to initiate with her.  It didn’t happen for a while, but she became my best friend, and still is after a decade.

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Like a lot of people on the spectrum, I often feel more lonely when I’m surrounded by people than when I’m truly alone. I think it’s the seeing the NTs interact and feeling so unlike them.  I read one person (I’ll try to find the reference) describe it as feeling like being separated by a pane of glass, being able to see the interactions and not really join them.

I get frustrated when I hear NTs generalize that autistics are “anti-social” or “loners.”  In fact, I heard someone who works in my field say, based on her experience with an autistic close relative, “They don’t really make that ‘human connection’ with other people.”

In his book The Reason I Jump, Naoki Higashida writes,

The truth is, we’d love to be with other people.  But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening.  Whenever I overhear someone remark how much I prefer to be on my own, it makes me feel desperately lonely.  It’s as if they’re deliberately giving me the cold-shoulder treatment.

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A few weeks ago I was riding in the car with my family.  Sitting in the backseat, I gazed out the window at the dark wintery scenes.  I noticed a feeling that I recognized as familiar.  As I saw each house, with warm light seeping through the curtains across the cold darkness between us, I felt pangs of longing.  I wondered why.  Maybe it was a metaphor created by my soul.

Empathy – a postscript

I’m watching a training through the system my company uses, and I got so excited by this part that my hand started flapping.  It just fit so well with yesterday’s post on empathy that I couldn’t help but get excited and share it.  The lecture is called “Psychological Treatment of Autism Spectrum Disorders,” given by clinical psychologist W. Bradley Goeltz, PsyD.

I’ve had kids with Asperger’s and we’ll be talking about another kid with Asperger’s – and they get it.  The can assume the perspective of somebody else who thinks like they do.  It’s still a conscious process – it’s not intuitive – but man they got it.  And the thing is, my Theory of Mind for somebody with an autistic spectrum diagnosis is not very well developed and it is definitely a conscious effort to assume that perspective. It’s not intuitive.  . . .
“I understand, I’m empathic.”  All of us who are in the helping professions, well we’re in it because we’re empathic.  That’s great as long as you’re accurate.  But empathy, in order to be empathy has to be accurate. If you can’t relate, if you can’t get inside that kid’s mind and think cognitively or at least appreciate how they think, empathy is a really tough task.

He also talks about how professionals haven’t been required to work to be empathic to the autistic kids; they expect the kids to have to adapt.

I tried to find more information about him and this lecture to give proper credit, since what I’m watching isn’t available without an account; I found a link to purchase the lecture – http://www.cequick.com/Psychological-Assessment-of-ASD.aspx