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.

Resising Gossip

And now for something completely different. . .

This isn’t specifically about Asperger’s, but something I’m really excited about and want to share with you.

I was super-excited to get my autographed copy before release day!

I was honored to be his official photographer 🙂

My pastor is awesome.  I won’t get into all the reasons why here, so you’ll have to take my word for it right now.  He recently wrote a book called Resisting Gossip.  You should read it.   Here’s the review I wrote for Amazon:

I am one of the happy members of Lanse Evangelical Free Church, we who call Dr. Mitchell “Pastor Matt.” During the process of getting this book published, he gave our Bible Study group updates and prayer requests. I loved sharing the joy of finally seeing this book become a reality! More than that, I loved discovering that Pastor Matt writes the same way he preaches and counsels- with a conversational tone, appropriate and effective use of Scripture, and an obvious heart of concern for others.

In this book, Pastor Matt:
defines gossip
explains the different heart motivations behind our gossip
provides real strategies for resisting gossip
advises on how to respond when we are the subject of gossip
teaches how to repent of our gossip
includes a section for leaders to help cultivate gossip-resistant churches

All of this is done with carefully-chosen anecdotes and Scripture references. The verses aren’t taken out of context to support his points or thrown in as an afterthought; instead, it is clear that Pastor Matt learned what he is teaching from studying the Word.

This book is easy to read yet rich in content. It is sharply convicting yet full of grace and hope. It teaches timeless truths that are extremely timely in our current culture. I can’t recommend it highly enough!

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A few years ago, I asked my facebook friends for podcast recommendations.  One (also single) friend suggested the Boundless Show.  I checked it out and enjoyed it enough to keep listening.  A few months ago I was taking a walk and on the show they were interviewing a guy who just published a book.  I thought, “Hey!  Pastor Matt just wrote a book.  They should interview him!”  I got on their website and sent them an e-mail about the book, thinking it was a long-shot but couldn’t hurt.  After a few exchanges back and forth and having the publisher send them a review copy, we finally heard back that they wanted to get him on the interview calendar in early 2014.  I was *so excited* when I read the email! (For those of you who know about stims, my excitement translated to approximately 3 claps, 5 hand-flaps, and 4 knee-slaps.)

P. Matt asked me to suggest a few shows to listen to to prepare for the interview.  That inspired him to write this blog post (and that blog post helped solidify my decision to cut back on facebook time somehow; my solution was to delete the app from my iPhone to make it less convenient to check constantly.  But I digress.)

And here it is, his Boundless Show interview.  I am thrilled that I was able to help make it happen, and I hope that many people are blessed by his wisdom, as I have been.  Enjoy!

(click the image to go to the page to listen/download, or click here to download the podcast via iTunes- it’s on “An Unexpected Love Story: Episode 313”)

Link – Intense World Theory

“The boy whose brain could unlock autism,” by Maia Szalavitz

I stumbled upon this piece when browsing facebook.  It’s quite long, but talks about some fascinating research (I had heard of “autistic symptoms in rats” in studies, but didn’t know what that was supposed to look like).  I was of course interested to reach the parts on empathy, such as:

Indeed, research on typical children and adults finds that too much distress can dampen ordinary empathy as well. When someone else’s pain becomes too unbearable to witness, even typical people withdraw and try to soothe themselves first rather than helping—exactly like autistic people. It’s just that autistic people become distressed more easily, and so their reactions appear atypical.

And:

That’s the paradox about autism and empathy. The problem may not be that autistic people can’t understand typical people’s points of view—but that typical people can’t imagine autism.

Empathy

lightning across Lake Winnipesaukee

lightning across Lake Winnipesaukee

Thoughts about empathy have been swirling around my head for weeks, and I’ve been wanting to write something about it. . . but this is a topic that could easily be researched for a dissertation.  Instead of trying to write a cohesive essay I’m just going to catalog some thoughts here.

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I instantly become defensive when people talk about autistics and their ability to care about others.  I have reacted this way for years, even before I considered myself on the spectrum.  For example, at a meeting a coworker was talking about her brother who has Asperger’s, and his reaction to someone close to him dying.  I can’t remember what she said verbatim, but the gist was, “He didn’t really seem upset about it.  They just don’t make that connection with other people.  He didn’t want to talk about it.”  Without pacing the room and waving my arms around and shouting, “I’m autistic, too! We are human! We have emotions and love people!” I quietly tried to bring a little perspective.  I suggested that perhaps he didn’t seem upset because people on the spectrum often don’t understand and express their emotions the same way neurotypicals do.  I added that funerals and the like can be really uncomfortable situations, with all those people crying and putting out negative vibes and maybe he was struggling to deal with that, rather than showing his own grief in a recognizable way.  I also suggested that individuals with Asperger’s are often logical people who want to fix things, and he might see talking about the situation as pointless because “What good will it do?”

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I think one of the problems is, how do we define empathy?  I have Tony Attwood’s book Asperger’s Syndrome (1998) on my shelf, and I pulled it down to see what he had to say about empathy.  A search via the index gave me this (p 55, 56):

The original list of features for Asperger’s Syndrome includes the comment that the child lacks empathy.  This should not be misinterpreted as meaning that the child completely lacks the ability to care for others.  It is more that they an be confused by the emotions of others and have difficulty expressing their own feelings.

But wait – isn’t “caring for others” what most people are thinking of when they talk about empathy?  I get the sense from things I read/hear that a lot of people think that autistic people don’t care about the feelings of others, that they’re unfeeling robots.  The almighty Wikipedia says, “Empathy has many different definitions that encompass a broad range of emotional states, such as caring for other people and having a desire to help them; experiencing emotions that match another person’s emotions; discerning what another person is thinking or feeling; and making less distinct the differences between the self and the other.”  (emphasis added)  Clearly people on the spectrum don’t (as a whole) lack the ability to care for others and want to help them.  It’s the other aspects of empathy that can be difficult, like “discerning what another person is thinking or feeling.”

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It seems like this “lack of empathy” (or perhaps we should call it, “misunderstanding others”) isn’t reserved only for autistics.
This author says it well:

I think it’s important to draw attention to the fact that this lack of understanding goes both ways. I find that when people on the autistic spectrum fail to understand someone’s reaction, this is seen as ‘lack of empathy’ – but, when someone who is not on the autistic spectrum fails to understand the reaction of an autistic person, this is seen as a case of ‘autistic people are a puzzle’ and a justification for representing us as a jigsaw puzzle piece. These double standards are unhelpful. They place all responsibility for lack of understanding on the autistic person, and create a divide between those who are on the spectrum and those who aren’t.

Rachel Cohen-Rottenberg states in her  Critique of the Empathy Quotient (EQ) Test:

After all, if the statement about intuitively reading awkwardness or discomfort assumed that the respondent were looking at an autistic person, the results would come out quite differently, for two reasons: a) autistic people stand a better chance of reading one another’s signals properly, and b) non-autistic people usually find it very difficult to read autistic people’s signals properly.

NTs may be better at reading NTs than autistics are, but autistics are better at reading other autistics than NTs are.

I believe this is one of the reasons I am a good TSS.  Often I’m more likely to accurately guess what’s going on in my clients’ heads than even their caregivers are.  Here’s one example:

A young autistic girl was screaming under the kitchen table while I talked with her mom and her BSC.  She hadn’t yet been given her medication.  When her mother directed her to take the medication she refused, and so the mom told her to stand in time-out (a spot in the kitchen with us).  The girl stood there for a minute but then went over and closed the sliding-glass door that led outside.  Her mother yelled at her for leaving time-out.  I told the women that I heard a car drive past right before the child closed the door, and maybe that was the antecedent.  The BSC agreed that the girl was probably over-stimulated and the car was extra loud to her, even though the two other women hadn’t noticed it.  The mom then stopped reprimanding the girl, and after getting her to take her pill she had her go to her quiet bedroom to calm down until it kicked in.

As a bit of an aside, here is a beautiful post that may help you empathize with the sadness of someone with AS – “10 Things Not to Say or Do When I am Sad.”

A wonderful example of NT/AS misunderstanding was on “The Hofstadter Insufficiency” episode of The Big Bang Theory.  Starting at minute 1:45 in this video, Sheldon shares something personal with Penny.

Sheldon: Here’s something else you don’t know about me. You just hurt my feelings.
Penny: What did I do?
Sheldon: I opened up and shared something deeply upsetting to me. And you treated it as if it were nothing.
Penny: I-I didn’t think it was a big deal.
Sheldon: It is to me. That’s the point.

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Imagine a row of people watching an emotional movie, such as the recent version of Les Mis.  Three of them are crying, and one isn’t.  Would you assume the first three are feeling empathy for the character singing on-screen, and the fourth was cold and unfeeling?  Maybe.

The first person is thinking about the character’s situation and feelings, and she’s empathizing and feeling their emotional pain.
The second is crying because the song was a favorite of his late mother, and he’s grieving for his loss.
The third is having memories of her own past hurts stirred by the words of the song.

And then there’s me.  I’m literally thinking, “This is a really sad song.  I can’t imagine how horrible it would be to be in her situation and feeling all of those things.  And if I let myself think of her sadness or my own past heartaches, I will cry.  I hate feeling negative emotions, and I HATE crying in public. . . so I’m putting up the wall.  Look at that – they’re using a really narrow depth of field.  Why don’t they keep his eyes in focus?  That’s Photography 101.  Obviously they’re doing it on purpose, but I really don’t care to stare at this guy’s nose-pores. This is weird.” And I focus on the cinematography and random details for the rest of the film.

Take that, Les Mis.  I can shoot with a wide aperture, too.

Take that, Les Mis. I can shoot with a wide aperture, too.

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The empathy issue was actually the biggest reason I thought I wouldn’t qualify for an autism diagnosis.  I’ve always felt *too* sensitive to the emotional states of others, as well as their hidden feelings at times.  In Rudy Simone’s excellent book Aspergirls, she says that women with AS can have heightened “psychic sensitivity” and can sense things like others’ true intentions hidden behind their outward appearance and words.  Tony Attwood mentions this as well in this forward.  And in this post on the topic, Tania Ann Marshall even cites the Highly Sensitive Person website that helped me so much in college.  In these cases, it seems like women with AS are using this “sixth sense” to compensate for not being able to read people the same way neurotypicals do.

Here are two posts that talk about people with AS feeling too much empathy:

Theory finds that individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much

The Hidden Autistics II: Asperger’s in Adults and Empathy

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In my readings and wanderings, I also came across Aspies who fought against the push to say autistics don’t have an empathy problem.

Here’s a very short one – “Stop Making Value Judgements about Empathy Please”

The Empathy Conundrum“- I’ve mentioned before that I’m a big fan of the Musings of an Aspie blog.  I really appreciate this post, and it gives a good balance to the discussion on empathy.  In fact, re-reading it now I feel like she has much better things to say about empathy than I do, but since I’ve already typed up most of this post I’ll keep it.

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One day I was reading a link someone shared on facebook, and on the side of the page saw a link to another article titled, “10 Symptoms of Asperger’s Syndrome.”  Feeling a little trepidation about what might be said regarding AS, I clicked the link.  The third symptom listed is “Inability to Empathize.”

Individuals with Asperger’s syndrome may find difficulty empathizing with others. As they age, the affected person will learn the accepted social response for interacting with others. While they may react appropriately and say the “right” things, they may not understand why the other person is truly upset. This can be an issue in childhood as the individual with Asperger’s may play too roughly with their peers or say cruel things, unknowingly hurting the other person. When confronted for this behaviour, the child may respond that what they said was true and they do not understand the issue.

Oops.  I recently made an off-hand comment online that caused a dear friend to cry; that was definitely not my intention, and obviously I couldn’t see how it would upset her, or I wouldn’t have posted it.  And I can’t tell you how many times (both growing up and even in the past few years) I have said something to my sister that really upset her, and my mom would reprimand me and  have to explain to me why she was upset.  Usually my first reaction in those situations wasn’t to feel sorry – it was to feel frustrated and annoyed that she responded that way, because I “couldn’t see what the big deal was.” Especially if I thought I was just stating a neutral fact.

Maybe I have a problem with empathy after all.

Happy Holidays

Holidays can be stressful and emotional times for everyone – having Asperger’s usually makes it worse.  I just experienced my first family get-together since my self-diagnosis, and the self-awareness and respecting myself really helped.

Pie

Ten years ago, when I first discovered that I was a Highly Sensitive Person, I often used “holidays at Gram’s” as one of my anecdotes to explain to people what it meant. Like this:

When I was little, we’d go to my Gram’s house for holidays.  And at some point I’d suddenly tell my parents that I wanted to go home.  Mom would say, “Okay, we’ll go in about half an hour.”  And I would feel panic and even want to cry.  I never knew why.  I often liked playing with my cousins, I always liked visiting my Gram’s, and I knew that I was being “unreasonable.”  But in those moments, I wanted to go NOW.  I’d repeat that I wanted to leave, but I couldn’t articulate that I needed to, because I didn’t understand it.  Instead I’d usually go in one of the unoccupied bedrooms and wait there.  Now I understand that I was overstimulated, and I had reached my limit – as suddenly as if a switch was flipped.

We’d walk in the door and my senses were assaulted.  Food smells, sounds, people moving around.  I would also be physically assaulted – aunts with jangly jewelry, powerful perfume, and greasy-makeup-cheeks; uncles with scratchy mustaches; and a swarm of little cousins – all trying to hug and kiss me.  I would back up; I would run away; I would squirm; I would actually punch them.  They thought it was funny.  Sometimes a relative would refrain from trying to grab me and voice that they knew I didn’t want to be hugged, but I often felt bad about that.  The thing is, I crave physical touch.  It’s one of my main “love languages.”  But like most autistic people, I only want it on my terms.

I often felt like I didn’t fit in with my cousins.  Not knowing about Asperger’s, I came up with several theories over the years, such as:
I’m older.
I live farther away.
We have nothing in common.

Those were all valid reasons why I felt different. . . but it doesn’t look like I have any aspie-relatives on that side of the family, so I faced the same social divide that I did with my non-blood peers.

At family gatherings – as well as at gatherings with our family friends – I’d frequently wander between the kids and the adults.  I’d try to interact with my peers, feel bored and/or left out, and then go hang with the adults until they started talking about boring adult stuff (like people I don’t know).  I might wander back and forth a few times or go find a quiet place to read or play my GameBoy.  I always loved it when an adult like Aunt E. would pay me some special attention and make me feel less alone.  If I was really lucky I would have a friend along; my parents were awesome about letting me take a friend (or two or more) to practically everything.  Despite my social deficits I was blessed with some really loyal, understanding friends over the years.  Holidays and other events were always easier when one of them was around.

It was a beautiful (albeit a little stressful) drive out into the woods

It was a beautiful (albeit a little stressful) drive out into the woods

So back to this year. . . we had Thanksgiving out at my pap’s hunting camp.  I asked my mom ahead of time who was planning to be there.  I had been out to the camp for Thanksgiving ten years ago, so I had memories of what to expect.  When we arrived I dutifully gave hugs and made some effort to join conversations, then sat on the couch for a bit and played a few apps on my phone (no service out there, so I was stuck with offline games- mainly a crossword puzzle app and Flow, which felt rather “stimmy” ).  I interacted when spoken to and occasionally joined back in when there was a conversation that interested me, but I didn’t push it.  I respected that I have a limited number of spoons for social interaction and didn’t make myself feel guilty for taking breaks.  I was still in the same room, after all.  I interacted a bit with my cousin’s 1-year-old and took some pictures.  And after eating our delicious dinner I sat at the table and had a good conversation catching up with a few people.    I had respected my limits, and my relatives were all social in a non-threatening way, not saying anything about me occasionally sitting quietly by myself.  At one point I thought, “I’d like to go home now,” but I didn’t bother saying anything because I knew I could last a little longer.  The switch had not yet flipped.  Success.  OLYMPUS DIGITAL CAMERA

Reflecting on “The Doubly Exceptional Child Grows Up”

After reading the Musings of an Aspie post that led to my self-diagnosis, I read several more of her entries.  This is one I read with a special hunger, because I too was labeled “gifted” as a kid and we didn’t know I had Aspergers.  Unlike Cynthia Kim, I didn’t have a great gifted program at my school.  I was in 1st grade when I received the diagnosis and the next year  I was thrown in with some older kids (scary!) for the weekly activities. (If I recall correctly I was the first one in my grade to go, but one other girl may have started at the same time.)  I only have two clear memories of the program.  The first is building towers with straws in the library; I was frustrated when we were done and I saw the superior techniques the other kids had used. The second was using an SLR camera. We were given note cards saying what we were to photograph, and mine said “blacktop” – I was super embarrassed when I had to ask the teacher what it was and she told me I was standing on it.  Today I asked Mom a few questions to check my own memories of the timeline. She said she talked to my 2nd grade gen-ed teacher and they agreed that to me it felt more like a punishment, so they let me quit the program.

Fortunately I wasn't permanently deterred from learning to use an SLR.

Fortunately I wasn’t permanently deterred from learning how to use an SLR.

In fifth grade a went to a different school (I was bored; they promised I could work at my own pace; they lied).  I enjoyed the gifted program there, mostly because I had a crush on one of the boys.  When I returned to public school the next year I continued in the program.  From what I recall the teacher was pretty cool and really nice to me, but my peers. . . well. . . they were all girls, and at this point the bullying and social awfulness had started (and in junior high the gifted class ended up being one of my worst settings socially).  But that’s a topic for another day.  In 9th the teacher who normally had the gifted kids for a period was ill, and the sub didn’t do much with us, so it was basically a fun study hall. That was my last experience with the gifted program.  Junior and senior high were academically better for me because there were accelerated and AP courses to take.

Back to the post titled “The Doubly Exceptional Child Grows Up.”  I hope you’ll read it in its entirety, but here are a few of my favorite key quotes:

Adults wrote off our quirks as a byproduct of our intelligence. They sent us out to the playground and expected us to figure out how to navigate the social minefields that lurked within kickball games and jump rope circles. We were smart. We would get it eventually.

This is a bit like taking a kid who’s a good baseball player, throwing him in the pool, then being surprised if he sinks like a rock. What do you mean he can’t swim? If he’s athletic enough to hit a baseball, surely he’s athletic enough to swim.

When you arrive in adulthood lacking the social skills that most people have mastered by sixth grade, life becomes exponentially more confusing and hard to navigate. For much of my adulthood, I’ve had the odd belief that someday I would “grow up” and suddenly feel like an adult. That I was just a little behind the curve when it came to social skills and one day everything would magically fall into place.

A final note for today about giftedness. When I was in college, I took as an elective an education course titled Psychology of the Exceptional Child (special education).  Our wonderful professor put the bell curve up on the board, and reminded us that two standard deviations below the mean on an IQ test meant a child received an MR diagnosis (now Intellectual Disability) whereas children two standard deviations above the mean were labeled Gifted. Children in the first group generally spend most of their school day in a special classroom, and children in the second group spend maybe an hour a week in a special classroom. Yet the second group is just as different from their typical peers as the first group is. That kinda blew my mind, and it helped me feel a little more understanding towards myself. It also helped explain why I felt so very different, though I hadn’t yet discovered the biggest missing puzzle piece.

Hmm.   I wonder about the percentage of people at the right end of the bell curve who are also Aspies.  Let’s research. . . first interesting Google result- here’s a great article about Gifted children with Asperger’s Syndrome  – it includes a chart showing some differences between Gifted and AS kids as well as some strategies for helping the AS kids.  I’m heading down a rabbit trail and have “real life” stuff to work on today, but I’d love to look into this more.  If you have any thoughts or research to share, leave a comment!