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.

Ode to Organizing

In the beginning, God created the heavens and the earth.  Now the earth was formless and empty. . .

And after he made the light, earth, and animals, he said, “Let us make man in our image.”

Being made in the image of God means we get a lot of his attributes, like the ability to love, and in my case, the desire to bring order out of chaos.

Babysitting a few years ago, I was sorting their cars... it was neater, but one of the kids drove through them.

Babysitting a few years ago, I was sorting their cars… it was neater, but one of the kids drove through them.

If you saw my bedroom floor or the room where I spend most of my free time at home, you would never think, “Wow, she has an OCD-style desire for order and organization.”  A few months ago I read a blog post that helped explain my seemingly-paradoxical messiness while loving order- a few quotes:

One thing about the autistic spectrum is that the brain doesn’t automatically prioritise the important things, and filter out the less important, which typically-developing brains do all the time to prevent overload.  . . .

Also, the autistic brain can have difficulty with sequencing (this is an aspect of dyspraxia, which commonly co-occurs with Aspergers). Sequencing involves both prioritising and being simultaneously aware of all the actions in the sequence while giving priority to one at any one time. This creates a sort of mental overload. It requires a good working memory – that is, the ability to keep several things in your mind at one time as you work with them – and people on the autistic spectrum often have difficulty with working memory.

Big tasks and projects always involve prioritising and sequencing. The advice people always give is ‘break it down into smaller chunks’, which makes sense in theory, but in reality involves deciding which chunks to break it down into – again, another prioritisation thing. Another aspect is that in deciding upon chunks, you often don’t know until you start on something what exactly it will require, and how much time will be needed. For me, this is a very overwhelming factor – it is about going into the unknown, and maybe getting lost there.

Some people on the autistic spectrum have a spotlessly tidy house, and diligently keep it this way. I would love a spotlessly tidy house, but I get frequently overwhelmed by ‘stuff’ in my house. I call it ‘stuff’ because most of the time I’m barely aware of it as it accumulates and creates mess. I will be doing something – and whatever I’m doing requires me to take things out. And I like to lay everything out so that I can see it – otherwise I forget it exists! I leave it out because I think I may continue doing it – and then forget about it and bring something else out. Before long, there is stuff everywhere – overwhelming stuff, and I don’t know where to start and I have forgotten where most things were kept, and perhaps where they were kept wasn’t a good place anyway and I need to find a better place, and there are some things which maybe I should throw away, but that’s a big decision, and I don’t know if I can make the correct decision.

“‘I just assumed she was lazy’” on the blog Aspects of Aspergers.

I also really appreciated her strategy of picking up ten things to take care of, rather than getting overwhelmed by the clutter and not knowing what to do with it all.

This blog post over at Musings of an Aspie was also very insightful and illuminating – “Procrastination or Executive Function Fail?

Another thing I struggle with:  “Context and non-transference of behavioral routines.”  I totally identified with this post – she basically says that if you think of something you need in the car, you’ll forget to get it when you’re in the house.  That reminds me of the study that shows that walking through doorways causes forgetting.  Yes, that was a real study, and I find it simultaneously amusing and validating.  Recently I’ve learned to set reminders on my phone for specific times, such as when I know I will be completely in the door and settled after arriving home (because, as we just discussed, if I’m reminded in the car or driveway I will forget by the time I reach the house and can do something about it!).  I got a new iPhone for Christmas and I’ve found that Siri is wonderfully handy for safely setting a reminder like this while driving.

Thanks, Siri

Thanks, Siri.

And now for today’s story.

A few times a day I go down to the basement to fill up my water bottle from the extra fridge and do other miscellaneous tasks.  Last week I reached my breaking point with the state of the shelves at the top of the stairs (icing and mustard and soup and jam all together on a shelf- chaos!).  I had organized it a long time ago, but the rest of my family doesn’t have the same compulsion to *put things in the proper place* that I do.  So I decided that Saturday morning I would tackle that pantry cupboard.  This happens every once in a while.  My mom’s fabric stash in the neglected sewing room, the children’s books on the living room shelf when I was a nanny, the spice rack, even my current client’s DVD collection – if there is a group of related objects that are in a designated area and there is no discernible pattern or rationale to their placement, I’m going to react badly.  It could be a quick  fix: “Why are those two Curious George movies not with the other 5?  I need to move that…”  It could be something I’m not allowed to tackle: “No, you can’t organize my fabric until you help with more important things around the house.”  (What on earth could be more important than sorting the fabric so all of the blues are together, and all of the flannels are in one spot. . . never mind the fact that nobody ever sees that room.  I still get a little anxious thinking about that. It was a weird experience when Mom told me I had to wait, like a psychic pain.)  Or it could be a job that takes all day.

I cleaned out the pantry shelves, organizing and tossing expired goods as I went.  I then reassessed the layout and made some practical adjustments.  When I was done, I was in the ZONE and moved on to the next cupboard.  And the next.  It was a great example of autistic inertia. . . though unexpectedly having to deal with a pantry moth infestation used up more spoons than I had expected to need for the task (inertia? spoons? read here if confused).  It was one of those times I was so focused and active that I forgot to eat and became shaky.

One topic that occurred to me while cleaning was stimming – while grossed out by the pantry moths I frequently shook my hands or rubbed them aggressively.  I’ve found that since recognizing my autism I’ve been more aware of my stims or desires to stim, and also more willing to embrace the movements.  So if I’m at home in my kitchen and really excited about how the organized cupboard looks, I’ll let myself jump up and down or flap my hands briefly.  Those are harmless and serve a purpose to my body and brain.  We see nothing wrong with an excited child jumping and clapping – when does it become unacceptable for adults?  Hey, it’s still acceptable for “big” excitements like being on a game show (Have you ever seen The Price is Right?  Those people are always clapping and jumping up and down).  So maybe it’s just NTs not understanding that sometimes little things can make us feel *that* excited.  I’ve also noticed times where I subconsciously redirect the desire to stim.  For example, in the noisy school cafeteria one day I became aware that my body had the urge to rock.  I recognized it and allowed it to be suppressed, and then noticed that my leg had immediately started bouncing.  I don’t ever recall consciously redirecting that desire to a more socially-acceptable stim, but there it was.  I’m a frequent leg-bouncer, and assumed it was restless-leg syndrome, but now I know that it’s actually a stim.

But anyway. . . I felt much better after the organizing, and my mom was thrilled.

Chaos ------> Order

Chaos                                                        —————————>                                                       Order

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”)

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.

The Joy of Jars

A lot of posts I write will inevitably be focusing on the things about Asperger’s that make life difficult; after all, the diagnostic criteria are based on deficits (for a positive spin, read Discovery criteria for aspie by Attwood and Gray).  So here I wanted to share something that brought me great joy.

At the beginning of my “Emotional Overload” post I told you that I had sent my favorite band a link to the blog post I wrote about naming this blog after one of their songs.  And I shared that I got a little notification that Charlie from the band “liked” my post; I appreciated so much that he actually took the time to read it.

This past Friday Dad and I drove 5 hours to Columbus, OH to see Jars of Clay yet again.  Normally we don’t go that far just for a Jars concert, but I had never been to one of their Christmas shows and I got a deep desire to go. . . and my dad never says “No” to a concert.  Music is an aspie-fixation we share, and we’ve built a lot of wonderful memories traveling to shows together over the years.

We gave ourselves a large time buffer for the trip and made great time, so we arrived about 2 hours before the Meet and Greet was scheduled.  The venue served food in the front, and as we were about to sit down at a booth Charlie saw us (before we saw him, this time) and came over to say hi.  I thought to get a picture.

Charlie and me

Charlie is awesome.

He was supposed to be heading back for the sound check, but he talked with us for a few minutes about the tour, answered Dad’s question about shooting a music video in the Philippines, and listened to Dad’s story about one of my first concert experiences.  Then he turns to me and says, “Oh, and I really liked your blog, by the way.”   *invisible internal happy-dance*

While Dad and I ate our early dinner we listened to the band run through “Loneliness and Alcohol” for their sound check, and I was feeling so extremely happy after that interaction that eating was almost upsetting my stomach.

We had a nice time exchanging a few words with the rest of the band at the Meet and Greet, and Jude kindly rounded up the guys for a group photo.  They also graciously signed a set-list I grabbed from the stage after the show.

Matt, Charlie, Stephen, me, Dad, Dan.  And cookies.

Matt, Charlie, Stephen, me, Dad, Dan. And cookies.

Dad and I were able to stand right up front against the stage – it isn’t the best for sound balance, but it’s just so much fun!  This is what it looked like:

Years ago I had recognized that my love for the band was bordering on obsessive (creating a website, being highly active in the wonderful Jarchives community, etc)  and I consciously toned it down; I didn’t know at the time that it was an Aspie “special interest”/fixation, but I knew that things like stalking are socially unacceptable. 😉   But any of you who are on the spectrum will know how important special interests can be, and so you will probably understand why I had such a wonderful, joyful day.  Dad and I used to get excited when we could tell they recognized us from the many concerts we had attended; thinking of Charlie coming over to chat with us and bringing up the topic of my blog post truly warms my heart.  If you haven’t yet, I encourage you to check out their music.  You can even download some for free on NoiseTrade.com.

For the Love of Earplugs

The school cafeteria is loud.  The gym at recess is loud (especially when it’s divided in half and they’re all crammed together).  In these settings the young autistic boy I work with often covers his ears.  Last year we had him sit beside the cafeteria wall to reduce the noise, and right after lunch we’d go to the sensory room for 15 minutes.  I always appreciated getting that break, myself!  If we were having a particularly rough day I’d  sit on the beanbag with the weighted blanket, not even caring that it amused my coworkers.  (As an aside, I love the one I have at home – I got it from DreamCatcher Weighted Blankets).

For a number of possible reasons the cafeteria seems louder this year, and we usually go to recess right after. . . which means I’m feeling overstimulated and irritable right along with my client.  Another woman who sits with us at lunch started wearing earplugs, and I kept saying I needed to remember to bring some, and we talked about options that my client might tolerate.  Of course due to memory issues (like those described here) I haven’t remembered to bring any in.  Today this kind soul had an extra pair and let me have them.  Which was good, because I was already feeling overly sensitive today – I couldn’t even wear my ponytail properly-tight because I could feel individual hairs being painfully pulled.

These are staying in my lunch bag.

These are staying in my lunch bag.

As soon as we sat down I stuck those little foam plugs in my ears and felt so relieved.  I could still hear what was going on around me, but it felt like I was in a protective bubble.  I noticed I was able to breathe easier, and when we entered the gym 15 minutes after lunch I instantly stuck those suckers back in.  She tried giving my client a pair and he wasn’t able to tolerate them, but we’ve got to find something for him.  I’m thinking he’d be ok with something like earmuffs – they may not be quite as sound-blocking, but it would still help! I know I’ll be using earplugs daily.

This is what I feel like doing after being in those ridiculously noisy rooms.

This is what I feel like doing after being in those ridiculously noisy rooms.

One of these days I want to take a decibel meter to work with me.  I wonder if anyone I know has one I could borrow. . .

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!

Change

Change, you say?  My dad and I respond this way:

We quote it often.  In fact, I got this text from my dad this morning while I was at work – “We fear change. But I think you’ll like it.”

Ominous, isn’t it?

By the time I got home to the empty house I had completely forgotten about his text.  I was heating up some food for dinner, and while it cooked I opened the cupboard to retrieve a small glass for my grape juice.

HORROR. 

Those are not glasses.  Those are mugs.  They belong on the left side of the sink.  This is the right side of the sink.

Cue a short spell of hyperventilating, hand-flapping, and pacing, all while processing  – “AHHH CHANGE.  It makes sense.  That’s above the coffee makers. BUT IT’S NOT THE SAME.  The other cups are now beside the cupboard that holds Mom’s tall glasses.  It makes sense.  IT’S NOT OKAY.  It’s logical.  It’s practical. BUT IT DOESN’T LOOK RIGHT.”

To be honest I was concurrently amused at my response.  I think if I had been more specifically forewarned I wouldn’t have had quite the same reaction.  And because it’s such a practical and logical change I’ll be cool with it soon.

Emotional Overload

Last night would have been a lot more difficult if I hadn’t been able to view it through the lens of having Aspergers.

         

I was having a good Sunday.  I had no problems running sound during the morning service, ordered a new lens to use during portrait sessions, started a sewing project after a month away from the machine, and began watching a favorite TV series over again in a very Edwardian fashion (if you haven’t read 600 Hours of Edward – go do it).  Then to top it all off, after I shared the link to my Inland post with the band through facebook, Charlie from Jars of Clay liked the post.  I always appreciate when they appreciate my appreciation, you know? 😉   It was time for dinner and I was excited to tell my family about the latest interaction with my favorite band.

But then my phone rang.

Fortunately I didn’t answer.  I don’t know if I would have responded well if I had.  The caller left a message and leveled a false accusation against me.

I’m not sure how to accurately describe the emotions I felt.  My heart raced and I felt like I was shaking (I don’t know if I was physically shaking, but it at least felt that way emotionally).  I felt like my temperature dropped. A lot of times I ask my autistic client, “How do/did you feel?”  And he almost always responds, “Upset,” instead of giving me a more specific word like “Sad” or “Mad” or “Scared.”  Last night I felt “upset.”

I was dumbfounded by the accusation and by the fact that the person actually called me.  I went downstairs and told my family.  Through my new lens of self-awareness I noticed a lot of things.  I noticed I was talking too loudly.  I noticed my family was going to be done eating by the time I finally took more than a single bite, because I was too upset and too busy venting to eat.  I noticed that I kept forcing myself to take big deep breaths, same as I prompt my client.  I noticed (and even commented aloud) that I felt like rocking.

I noticed that my mom kept reassuring me that I had acted above reproach in the situation the call seemed to be referring to, and I kept trying to explain that I knew I hadn’t done anything wrong, but I was still upset.  I wasn’t upset because I thought I had done something wrong.  I was upset because I KNEW I hadn’t, and I was being thought of and talked of as if I had done something wrong.  And that’s NOT FAIR.  I have always had issues with “fairness.”  I was upset because I thought I wasn’t going to have to deal with any more drama from that specific part of my past, yet it kept coming up.  I was upset because I was under attack and there were just too many emotions (my own and the accuser’s) to process.

I managed to shove down my dinner through deep breaths and exhaled nonverbal sounds of frustration.  I had to eat so I could leave for Bible study.  I got out to my car and my mind was still churning over the situation, and I was spiraling downward.  I stopped my car before even leaving the driveway and switched the CD to Jars of Clay’s Self-Titled album.  It is my go-to record when I am desperately upset; it is the most effective medication available to soothe my soul.  I turned up the volume and sang along to reduce my ability to ruminate.  It’s a 20-minute drive, and during the last 5 I found it impossible to turn off my thoughts of what I wanted to say about what just happened.  Right before I turned into my pastor’s driveway I started crying – those unwanted tears of emotional overload that cause me so much frustration that I cry even more.  I hate those.  I took a few deep breaths and dried my eyes, then walked in.

I was still visibly shaken; my pastor’s wife immediately asked me what was wrong.  Before group began I was able to briefly discuss the situation with my pastor and his wife, who are two of my most trusted counselors.  My pastor advised me to ignore it; I nodded and said, “Yeah, I’m just feeling all. . . ” and waved my hands on either side of my head, unable to articulate what it was I was feeling.  Then instead of taking my normal seat on the floor I sat in the rocking chair.

And rocked for two hours straight.

I’m feeling much better today.