Mini-Review: M in the Middle

M.

When I reviewed the book M is for Autism, I said I wanted to hear more about this girl who calls herself “M.”  I lost my copy of the book, and when I went on Amazon to buy a new one I discovered the students and their teacher had written a sequel.  I was hand-flapping excited (though I tried to tone that down when I told Mom I ordered them).

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Both books arrived yesterday, and I was so startled by M in the Middle‘s thicker size that for a moment I thought they sent the wrong book.  But no, it’s a longer novel.  I missed the colorful pages of M is for Autism, but they occasionally play with the fonts and type to help M communicate.

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This is what happens when you have autistic girls write a novel about an autistic girl.

 

I re-read M is for Autism last night to prepare for the sequel.  I was a little surprised by *just* how short it is; I think that I was so engrossed in the scenes and M’s mind when I first read it that it felt “bigger.”  I loved it just as much the second time.

I was impressed by the consistency of the character and her voice between the two books.  Our main character and narrator is now in year 8 in England (7th grade, here in the States).  She got her autism diagnosis a year ago, and her wonderful therapist has been helping her understand herself and develop strategies for dealing with her often-crippling anxiety.

I do want to caution those of you who struggle(d) with anxiety.  The authors do an incredible job of provoking empathy for their anxious narrator.  Pretty much any time M was taking deep breaths or using another calming strategy, I found myself taking deep breaths along with her.  I read the book in one day – partly because it was so good, and partly because I didn’t want to drag out my time living in her anxious mind.

We get a fuller picture of M’s life in this longer book.  She deals with INCREDIBLY frustrating adults who do pretty much the opposite of what this poor girl needs, fueling her anxiety and pushing her towards mutism.  She encounters a few people who get her, show her kindness, and help her find her voice again.  She has “friends” who turn into horrible bullies and she has friends.  She has an obsessive crush on an older boy, and wonders if she can have a “normal” future.  She tries so hard to fit in.  She tries so hard to have friends.  She tries so hard to do the right things at school.  She tries so hard to combat her anxiety.  She tries so hard to connect with her family while recognizing she can’t do the things they want her to do to show that connection.  She tries. So. Damn. Hard.

While 13-year-old me didn’t have all the same struggles and experiences, I related to a lot of what she goes through.

Again, the authors share some truly insightful thoughts through M’s words.  Here are a few I made note of as I read.

About her mother (p. 113):

She was delighted when we got the diagnosis. She was reading books and web pages and talked about us going to meetings and then she just seemed to stop.  Like she stopped believing I had autism or maybe when the reality of it began to unfold it all became too difficult.  . . .

But I’ve been carrying it around with me my whole life.  This is my reality, and does she realise how difficult that is?

About trying to “crack the friendship code” (p. 115):

And even though the truth is I love being on my own, I feel a desire to fit in and have friends.  Like it’s part of my purpose on earth.  I’m hardwired to fit in!  . . . I want to be accepted by my fellow human beings, but it really is so much easier on my own, and I retreat back to my little pink room, back to the security of my bed and blanket and the comfort of Skylar, season 5, episode 7.

When her mother suggests she write down how she feels, to let her feelings “out into the world” (p. 169-170):

Is it like letting Bella out into the back garden?  I haven’t got a back door.  I can’t just open a door to me and let my feelings out into the world.  Is that what everyone else is doing? Am I surrounded by other people’s feelings that they’ve let out??  Do I pick them up as I pass someone in town or do other people’s anger or jealousy latch on to me as I walk down a corridor?  And is that why I get so anxious?  I’ve picked up all the dumped emotions everyone else has let out into the world and I have an extra quota of feelings?

While writing this, I recalled watching the video about the Limpsfield Grange School girls (where this book was written).  I just realized that one of the plot points (involving the crush’s photos) was inspired by a real experience of a girl at that school.

I strongly recommend this pair of books – for autistic girls to feel less alone, and for people who aren’t autistic girls to stretch their empathy muscles.  It’s an emotional ride, but they both end with glimmers of realistic hope.

Mini Review: M Is for Autism

Recently I read Kathryn Erskine’s book Mockingbird, which is told from the perspective of a 10-year-old Aspie girl named Caitlin.  I still haven’t figured out how I feel about that book.  I’m always excited (and a little anxious) when I see a book featuring an autistic character, especially a girl.  But like I said, I don’t know how I feel about that one.  There were certainly moments where I thought, “Yes!  That’s exactly how it is!” but . . . well, I’ll let you be the judge.  It’s worth a read, though I warn you it is emotionally exhausting (she recently lost her brother in a school shooting).

When I was reading a few reviews of Mockingbird, hoping they would help me process my own thoughts and feelings, I saw something about another book, M is for Autism.  This book was written by a group of autistic girls and their creative writing tutor, because there aren’t enough books for teenage girls with autism.  That fact right there made me love the book even before I opened it.  When I did open it, I was surprised to see that it is full of color – not just the illustrations, but the pages themselves.  I LOVE that.  In fact, there’s a lot I love about this book.

m is for autism
Things I love about this book:

  • It’s colorful!  Every page has color.
  • M is a believable autistic character.  She has autistic traits without fulfilling EVERY stereotype, and has specific, unique quirks and interests.
  • I was pleasantly surprised that the mother gets to narrate a few pages.  I appreciated getting to hear her perspective, and it is very realistic – a mother who truly loves and wants to help her daughter, but just gets so darn frustrated and doesn’t always understand her.
  • Her therapist is wonderful. I wish I had her.
  • “It’s not an illness.  It’s more a way of being. It’s your wonderful state of mind, the way you view the world. That’s not being ill.”
  • It emphasizes that autism isn’t really the problem, anxiety is.
  • It touches on topics like social confusion, teasing, stimming, coping strategies, sensory issues, diagnosis, labels, therapy, support, and the complexity of it all.
  • This quote:

“I think you’re struggling too much. Everyone has a bad day, week, month even year but this is too much M. This is constant stress and anxiety. Life shouldn’t be too much of a struggle M.”

She’s right. Less of a struggle would be good. Life is a struggle when you’re trying to be normal.

 

The book made me smile, but it also made me hurt for my own 13-year-old self.
My only complaint is that it’s short – you can read it in a single sitting.  That isn’t a criticism of the book; I think it is long enough to fulfill its purpose.  That’s just a personal desire to read more about M and her journey 🙂
If you’d like to learn more about the writing of the book, here’s an article: http://www.telegraph.co.uk/women/health/what-is-it-like-to-be-a-girl-with-autism/

 

After writing this, I think I’ve figured out one of my thoughts about MockingbirdMockingbird feels like it was written by an NT for NTs – to help them better understand autistic kids, sure, but it’s for NTsM is for Autism is absolutely 100% for autistic girls.  It can help NTs better understand autistic kids, but that is for the sake of the autistic kids.

Random Relationship Advice from a Clear Non-Expert

I recently read an article about the benefits of writing, and I decided I would spend some of my time off this Sunday writing down some thoughts.  Valentine’s Day is coming up, so the topic of relationships is looming large.  There are no romantic prospects on my horizon, but at least I’ve got my box and cards ready for the party at work.  (I’m gonna be the coolest 30-year-old in the 4th grade).

Ninja Turtle sewer box to hold my valentines

I was a Christian teenager in the 90’s, so my shelf is lined with the usual suspects – Passion and Purity, I Kissed Dating Goodbye, When God Writes Your Love Story, etc.  I’ve also been listening to the Boundless Show podcast a lot, which is geared towards Christian single young adults, so relationships are the most common topic of discussion.  In addition, I’ve read a few books specifically about Aspergers and relationships, like Asperger Syndrome and Long-Term Relationships, The Journal of Best Practices, and 22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know.  But most of what I’m sharing here I’ve learned the hard way.

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“No man is an island” – and a couple shouldn’t be, either.

Like a lot of Aspie girls, my dating life began atypically late.  When I had my first boyfriend in college, my best friend called me out on some stuff – but I wasn’t totally honest with her about the relationship.  It turns out that was really stupid, and I vowed to not make that mistake again.  I now have a team of trusted advisers that I consult in matters like this – my best friend (and her husband), my pastor and his wife, and my parents.  This caused some friction with one guy, because he didn’t like the fact that I was talking about our relationship with them, but I’m still very grateful that I did.  I don’t mean you should complain to everyone about your significant other – if you need some help discerning between seeking counsel and gossiping, check out my pastor’s book.  But it’s important to have people in your life who know you well and can look at a relationship more objectively than you can when you’re in the middle of it.  Choose them wisely.  You don’t have to do everything they advise, but you’ll be better off having them as part of the process.

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Communicate about what physical touch is okay.

When a guy nervously worked himself up to asking me if he could hold my hand, I thought it was silly/unnecessary. Yet I really appreciated that he respected me enough to ask about stuff like that (maybe he was just terrified, but still).  My first kiss had been stolen from me, and that taught me a lot about the need to discuss boundaries, because after that all the guy wanted to do when we were together was make out.  Which doesn’t *actually* help grow a strong, healthy relationship.  This topic is especially pertinent for people on the spectrum, for a few reasons.  One, we (generally speaking) have trouble reading the non-verbal communication that is a huge part of romantic interactions.  This makes it more difficult to know what the other person is thinking and wanting, unless they spell it out verbally.  Two, every individual is different when it comes to what kinds of touch we like and when, and sensitivity to touch can be a major issue for autistics.  Some individuals absolutely can’t stand light touch (the kind that is common in flirtatious interactions) to the point that it can make them feel panicked or physically ill.  Personally, I get kinda weirded out by light touch, especially if I don’t see it coming.  I also dislike hugging people I don’t strongly like (I’ve written before about how I used to run away or fight with relatives who tried to hug me when I was little).  Yet when I’m with someone I’m close to, I love physical contact – it’s actually one of my love languages.  It needs to be on my terms.

So respect others’ rights to their own bodies.  Find out about their sensitivities and what they’re comfortable with.  You don’t have to make it super awkward, but be polite and keep those lines of communication open.

Snuggle bunnies

These two bunnies love to snuggle together.

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Emotional boundaries are just as important as physical ones.

What was that I said about learning things the hard way?  Ugh.  I really don’t have any specific, solid advice for this one.  It’s honestly hard to know how to build intimacy in an appropriate way, aside from saying take your time and don’t talk about certain emotional topics too soon.  It was a chapter in the book I Gave Dating a Chance that first introduced me to the topic of emotional intimacy, and I realized my good friend and I had crossed that line.  I won’t go into detail here, but I still haven’t fully recovered from the aftermath of that.  It resulted in one of the hardest times in my life (when I read the second Twilight book, I completely sobbed when Edward left Bella and there were those blank pages for each month, because I had lived that).

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Be honest.

This one should go without saying, but I’m talking about more than not lying.  It’s hard, because no two people are 100% compatible- there are going to be things we have to overlook or let go.  But we need to figure out which things really do bother us, and be honest about them.   At some point, if you try to ignore things, it won’t be pretty.  They’re going to add up and poison the relationship, or you’ll get in a fight about something unrelated and suddenly those myriad little annoyances will come spilling out.   I had a situation where I had said things were okay, but then I realized I was truly bothered by the low level of communication from a guy.  When I brought it up, it got him really upset, because I had previously said things were okay.  (Of course, it didn’t help that I sent a rather tactless e-mail instead of having a conversation about it, but that’s a topic for another day.)  This is why I bookmarked page 103 in Rudy Simone’s 22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know –

There’s also “alexithymia,” the inability to identify what one is feeling and therefore, not being able to express it or describe it in words.  If you tell her something that upsets her, she might not know it at first, or know why, so she might say, “Okay,” when in actuality, she doesn’t really feel okay . . .   We have a reputation for “saying what we mean and meaning what we say,” but if we don’t now what we are feeling at the time, we can’t.

Simone then brings up the topic of the spectrum “sixth sense,” and how we can tell something’s wrong even when someone isn’t telling us.  This is another reason I am bringing up the topic of honesty.  I’ve been in situations where I know something is up, even though I might not have hard “proof,” and I’m an emotional wreck wondering if I’m imagining things until finally I get the person to explain and confirm my suspicions.  Drag that kind of thing out long enough and you’re going to cause more hurt than if you had said something sooner. So be honest.

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I guess that’s it for today. A final random thought – when I look back at my relationships, I see that each one emphasized one area of connection above the others – spiritual, physical, emotional, intellectual.  It’s the spiritual connection I miss the most.

 

Mini Review: Nerdy, Shy, and Socially Inappropriate

When I first read that Cynthia Kim was writing a book, I was very excited.  Her blog, Musings of an Aspie, was the final puzzle piece in recognizing that I’m not just “as close to the Spectrum as you can be without being diagnosable,” as I wrote in my first post.  I’ve always strongly identified with the ideas and feelings she writes about on her blog, and it was a pleasure to sit and read her words in a full book.

I love that autistic women are fighting for more awareness and understanding with these blogs and books.  It’s an exciting time to be a part of this community, and I pray their efforts will benefit women and girls now and in the future.  Nerdy, Shy, and Socially Inappropriate is a book I can recommend without reservation.

Nerdy, Shy, and Socially Inappropriate book cover

First, the book itself.  I enjoyed the aesthetics of the cover as well as the formatting of the text.  Lists and sidebars help highlight important information.  The content is well-organized – and I like things that are well-organized.  Although a lot of the content was taken from her blog writings, the book does not feel like a collection of isolated essays.  I felt like the topics and sub-topics flowed incredibly naturally as I devoured chapter after chapter.

Personally, there were so many things I related to in this book.  For example, when she talked about our difficulty blocking out extraneous stimuli, I remembered climbing into the trunk of our car on numerous occasions to find and stop whatever was rattling.  Her list of tactile sensitivities had me going, “Yep, yep, yep,” and chuckling that she included both “tags” and “TAGS.”  Her discussion of executive function deficits and difficulty making decisions gave me a flashback to standing in the kitchen crying because I didn’t know what I wanted to eat and Mom was getting frustrated with me (this was very common).  I couldn’t help but remember issues in a dating relationship when she said, “It may take hours or days to understand what took place during an especially emotional experience” (p. 143).  My best friend and I laughed as I read aloud the section on The “NO” Reflex, because it sounded so very familiar to both of us.  I could go on and on!

I loved that she included a lot of solid practical advice for both autistics and the people who love them, such as “Lessons from an ASD-NT Marriage” and “Rescue Strategies for New Parents.”  Like Ms. Kim, I’ve come up with a lot of coping strategies on my own, but she lists some that I hadn’t thought of (like carrying something pleasantly-scented if I’m going to be somewhere with objectionable odors).

A thought kept interrupting my reading.  One of the first books I read specifically about adults with Aspergers was Asperger Syndrome and Long-Term Relationships by Ashley Stanford.  It helped my mom and I recognize that AS fits my dad, but I remember it being a kind of depressing read as it focused on the deficits and struggles.  Reading Cynthia Kim’s book was more like reading John Elder Robison’s Be Different (which I can’t believe I haven’t talked about on here yet.  I should.  It’s awesome).  Both of these books are written by autistic people who are honest about the struggles that come with being autistic, but they talk about growth and the good stuff, too.  They have a realistic, balanced optimism that I truly appreciate.

If you haven’t noticed, I think this book is really, really good.  “But you don’t have to take my word for it.”

Soul Sisters

When I went to Guatemala, I had the opportunity to pray and to sing praise songs in Spanish with native Spanish-speakers.  I always knew that the Church was worldwide, yet getting to experience it made that knowledge so much more real.  It’s amazingly powerful and comforting to know that I am part of a family that lives everywhere I am likely to go, and that knowledge was a blessing each time I moved away from home.

I was reminded of my Guatemala experiences while watching this video this evening. Created by the Autism in Pink research project, it’s a documentary about autistic women living in four different European nations.   I really enjoyed it.  Even though we are separated by national borders, culture, and even language, I thought, “Look!  My people!”  It made me get a little teary.  I’m so glad more research is being done for women on the spectrum, and that more and more of us are learning about ourselves and working to support each other.

You know how in Escape to Witch Mountain, the siblings know they’re different and try to hide it and are basically only friends with each other (and the cat)?  And they finally [SPOILER ALERT] get reunited with their long-lost relatives. . . . who are actually from another planet?

There’s a reason autistic people tend to use the alien analogy so often.

Misunderstandings

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

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

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

Here were some of my shared thoughts:

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

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

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

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

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

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

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

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

 

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

Let it Go

I just saw this shared in an Asperger’s group on facebook, and I admit I got a little teary.  When I watched Frozen, I did think a few lines of “Let it Go” reflected the Aspie experience (though I prefer “Reindeers are Better than People”).  This treasure of a young lady took it one step further.  I would just love to give her a hug!

Speechless

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

Bull****.

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

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

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

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

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

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

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

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

free pattern available at Fandom in Stitches

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

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

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

Loneliness


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

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

-Jars of Clay, “Reckless Forgiver” –Inland

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

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

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

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

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

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

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

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

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

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

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

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On page 30 of Aspergirls, Rudy Simone says:

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

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

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

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

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

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

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

Empathy

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.