My Message to the 4th Graders

This is a post I’ve been wanting to type up for over a year now.  In 2015, I was working with an autistic boy for the third year in a row.  I was a TSS (therapeutic support staff), which meant I spent a lot of time with him both at his school and his house, working on behavioral interventions and doing lots of documentation. (For a little more detail about my job as a TSS, see the post “Crisis of Faith.”)  He had a LOT of hours.  Over those three years I not only got to know him and his family and nurses well, but I came to know and love a lot of his classmates.

His classmates were, for the most part, awesome.  This was a kid who would have super-scary aggressive meltdowns, but after it was over his classmates would still invite him to play at recess or help him follow instructions in the classroom.

Friends on a field trip

Friends on a field trip

◊♦◊♦◊♦◊♦◊

In the middle of those years, I had another client, up at the middle school.  In his classroom, there was a boy I’ll call “Hunter.” On my very first day, I suspected that Hunter was on the spectrum, too.  (My gay sister has excellent gaydar. . . do we have an accepted made-up word yet for autism-radar?)  Hunter was the kind of kid who had a lot of trouble socially, and unlike my little client at the elementary school, it wasn’t obvious to his peers that he was struggling.  They just sensed Hunter was different, and got annoyed when he’d be bossy or a “know it all,” and socially ostracized him.  It was difficult for me to watch, especially since I was still in that first year of my self-diagnosis, and I was reflecting so much on my own childhood.

◊♦◊♦◊♦◊♦◊

Back to that first client’s class.  I had seen first sparks of middle-school-girl drama forming as these fourth graders headed towards adolescence.  I had seen how the older students were treating one another.  I had watched these little kids be so considerate of my client and the other “different” kids in their classroom, and felt the hope it gave me for the future.  I didn’t want them to lose that.

So, I did something that is entirely out of character for me, and volunteered myself for public speaking.  I must have been inspired by the guidance counselor’s weekly lessons that were supposed to teach the kids emotional intelligence skills (identifying and handling their emotions, showing empathy, stopping bullying, etc.).  She was occasionally busy and couldn’t come do the lesson, which meant the classroom teacher lost that hour of prep time she had been depending on.  One of those days, I suggested I could teach the kids about autism.  Mrs. C loved that idea, so I let the ideas run repeatedly through my head and wrote my main points out on note cards.  I kept those cards in my bag, and the next time the guidance counselor cancelled, I was ready.  Or, as ready as I ever am to talk in front of people.

◊♦◊♦◊♦◊♦◊

It’s been a long time since that day, so I won’t be able to remember it word-for-word, or remember the excellent comments that Mrs. C and the students shared during our discussion.  I wish I had taken notes on those, because the kids really interacted with me.  But here is what I’ve reconstructed from those note cards.

◊♦◊♦◊♦◊♦◊♦◊♦◊♦◊♦◊♦◊♦◊♦◊♦◊

At my house, we have a Wii, and we have a PlayStation 3.  If I put my MarioKart disc in the PlayStation, will it work?

“No!”

So, my PlayStation is broken?  Or the disc is broken?

“No.”

[I explained that the two game systems have different operating systems.  I tried also making the Windows/Mac comparison that I originally saw explaining this idea, but they weren’t as familiar with computer systems.]

A lot of you have seen me wear earplugs in the cafeteria.  Why do I do that?

“Because it’s too loud.”

But wait. . . if it’s “too loud,” why isn’t everyone wearing earplugs?

[discussion]

So, do you mean we each have our own “too loud”?  We can experience the same thing in different ways?

◊♦◊

In my psychology classes, we were warned that sometimes you learn about something and start diagnosing all of the people around you with that thing – don’t do that!

[I projected the DSM-5 diagnostic criteria for ASD on the board, and tried to give a quick 4th-grade-level explanation of each section, with examples]

◊♦◊

Where does autism come from?

I know that you guys have been learning about “traits” in your science class.

We know that autism can be inherited.  It runs in my family.

Our environment is also going to play a part in how people with autism develop, how bad some behaviors are, how they learn to cope.

Just like every kid.

Everyone has strengths and weaknesses.  Some of you are awesome at basketball, but not soccer.  Some of you are bad at memorizing multiplication facts, but awesome at geometry.  Some of you are awesome at understanding what others are feeling, and being kind when they need it.

◊♦◊

“Different operating system” does not equal “broken.”

That’s what I want you guys to understand about autism.

It doesn’t mean he’s sick.  It doesn’t mean she’s stupid.  It doesn’t mean he’s broken.

He or she has a different operating system than most people.  The way they experience the world can be different, and so they may react differently.

◊♦◊

You guys have been learning about empathy, and how it’s so important.

When you have a different operating system, it makes it harder to understand how another person is thinking and feeling.  Because if you were in their situation, you would not be thinking and feeling that way.

What are some of your favorite smells?

If you see me at a seafood restaurant, I’m going to look disgusted and unhappy.  You might not be able to figure out why – because to you, the place smells awesome and you can’t wait to eat.  But I hate the smell of seafood.

◊♦◊

In my kitchen at home, my mom has always had a little sign by our kitchen sink.  I see it every day.  It says, “Be kind, for everyone you meet is fighting a tough battle.”

I’ve been so impressed with you guys and the other kids in this grade who I’ve gotten to observe and know these three years.  You do so much to be kind and include other kids.  That is really special.  Not all kids are like that.  And I don’t want you to lose that.

Stay kind.

◊♦◊

When I was growing up, I had a really hard time reading other people, and they had a hard time understanding what I was thinking.  I’d feel happy but wouldn’t look it.  I didn’t make a lot of eye contact.  I was obsessed with dinosaurs, Ghostbusters, and Ninja Turtles.  I couldn’t color until all 96 crayons were in meticulous rainbow order.  Before I could read, my mom had to read my favorite TV show’s episode title when it came on the screen, or my day would be ruined.  She was really happy when I learned how to read!  I wore my socks inside-out because the seam bothered me, and I hated most clothing.  Some of these things got in the way of relationships, and made school hard.

Sound familiar?

◊♦◊

I’m 30.

I still wear some of my socks inside out.  I’m a lot better at understanding what other people are feeling.  I still like things to be organized.  I still have a hard time making new friends.

One reason I wanted to talk to you guys about this is that one day you will be 30.  You’ll meet people who have different operating systems.  Be kind.  Give them a chance.  They might make your life more interesting.

Cards I gave the class on my last day as a TSS.

Cards I gave the class on my last day as a TSS.

Advertisements

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.

Acceptance, Not Awareness

This past Friday I had my mid-year review at work, the first such meeting since I was hired full-time a few months ago. It was a much more in-depth evaluation than the little “here’s a paper with all 10’s circled on it, let me know if you have questions, sign here” I had at my last job.  My manager was very positive and complimentary, gently providing “growth areas”  rather than “weaknesses” or criticism.  My peers also provided a few positive comments for him to share with me.  In a summary section, he wrote something like, “She is different, and that’s a good thing.”  He does not yet know that I am autistic, but since I work in IT now, I’ve been able to be a little more authentically me than at past positions.

◊♦◊♦◊♦◊♦◊

This weekend I was continuing my way through the book Neurotribes, which is excellent.  The problem is, it jumps between stories so cool that I excitedly read them aloud to unwilling victims, to parts so heartbreaking that I have to put it down for a while.  I was reading the section on Lovaas and the early days of ABA, and researchers’ use of punishment.  It was so upsetting that I was stimming (a lateral hand-flapping movement) and engaging in self-injurious behavior (biting my hand) – two of the very behaviors that were physically punished in these early studies.

I talked to a person about this right after setting the book aside (I will use “they” as a gender-neutral singular here). I was so worked up after talking to them that I was still doing a lot of the rapid hand-shaking while I was preparing some coffee.  They then said, “You’d better get that out of your system by Monday if you want them to still think you’re ‘different in a good way.'”

That bothered me.  But I didn’t have the words to express to them why it hurt so much.  First, it was just the latest in a long line of comments like that throughout my life – those, “I hope you don’t do that in public,” or, “Are you going to shower before you go out?” or, “You don’t say that at school/work, do you?” kind of comments.  The ones that insinuate I haven’t yet learned how to behave “properly” around normal people, out in public.

Second, and this is very much related to that category of comment, I only engaged in that behavior because I felt safe to do so.  In my own home, with people I trust, I’m going to feel freer to behave in ways that are not seen as “acceptable” in other settings.  I’m going to complain about tasks I’ve been assigned at work, but I’m NOT going to have a bad attitude about them around my manager and coworkers.  I’m going to skip a shower when I’m staying in, but I’m NOT going to go to class with greasy hair.  I’m going to release extreme emotion nonverbally through self-stimulatory behaviors, but I’m NOT going to be as obviously autistic in the behaviors I select when I’m around people I don’t trust with that.

Third, they used something that was an extremely positive, affirming, and accepting comment about me to shame me for my autistic behavior.

◊♦◊♦◊♦◊♦◊

I was recently talking to another Aspie-girl about how hard it can be, living with neurotypicals.   We talked about how sometimes we trust someone with an explanation for our behaviors, or explain how we feel about something, and they end up using it against us later – even if it’s just what they see as a friendly teasing comment, it still hurts, and makes us less likely to trust again.

So, if you love someone on the spectrum, please recognize that often those “socially-unacceptable behaviors” you see are indications that the person feels safe with you.  Especially if you only see the behaviors in a “safe” setting, like the person’s home.  And please, if we trust you with an explanation of how we think and feel, don’t use it against us.

And for you autistic people reading. . . what advice should I give?  Be more careful whom you trust?  Don’t let your guard down and be so “autistic” around people?  No.  On my drive home today, Jars of Clay’s song “Inland” came on my shuffle.  The song I named this blog after. I was thinking about how even though another song on the album is my favorite, I was glad I got an “Inland” lyric inscribed on the ring I wear every day.  The words “you keep walking inland” are a constant reminder to me that I must press on, I must engage in community and relationships, I must keep trying.  I must keep walking inland – “where no man is an island.”  And so must you.  Don’t give up explaining, expressing yourself, and teaching.  Learn to live among people who are not like you, learn to communicate with them, and treat everyone with the respect and kindness you want yourself.   Don’t hide.  Don’t retreat.

 

It’s the only way we will gain more acceptance. 

Inland Ring

 

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.

◊♦◊♦◊♦◊♦◊

“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.

◊♦◊♦◊♦◊♦◊

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.

 ◊♦◊♦◊♦◊♦◊

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).

◊♦◊♦◊♦◊♦◊

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.

 ◊♦◊♦◊♦◊♦◊

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.

 

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

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

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

 

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

Yep.

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

YES.

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

THIS.

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

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

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

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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?

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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).

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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)

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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.

Link – Intense World Theory

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

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

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

And:

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

Empathy – a postscript

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

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

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

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

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.

◊♦◊♦◊♦◊♦◊

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?”

◊♦◊♦◊♦◊♦◊

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.”

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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

◊♦◊♦◊♦◊♦◊

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.

◊♦◊♦◊♦◊♦◊

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.