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

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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.

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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.

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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.

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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?

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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]

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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.

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“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.

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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.

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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.

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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?

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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.

Lessons from Speech Class

This month I finished my last class for my associate degree in Information Sciences and Technology. It was a speech class.

More accurately, it was a class focused on the “Principles of communication, implemented through analysis and evaluation of messages, with some attention to formal speaking and group discussion.” Unlike the on-campus offering where you take turns giving short speeches in front of the class, this course focused more on analyzing messages. I chose CAS 100C instead of 100B, to avoid having to do group work.  (I’m so over group work. See image below)

group project

This class was a LOT of writing, which translated into a LOT of time spent on it each week.  I’ve been called a “good writer,” but it takes time for me to write.  Especially when it involves the need to read (and sometimes find) scholarly articles that are to be cited in that week’s essay.  In addition to the weekly essays, we had to write and record two 6-8 minute speeches as our midterm and final.

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I was really fighting my perfectionism this semester.  No matter how many times I reminded myself that my grade didn’t matter, no matter how many managers at work (2) told me to chill out and “just pass,” no matter how many times my boss guaranteed the grade would have no impact on my job. . . . I just couldn’t not care.  I tried SO HARD to turn in work that wasn’t up to my personal standards, yet I still ended the class with an A.  The professor even asked if she could share some of my work with the rest of the class as good examples.

Before this class, I had started learning more about the Enneagram, and I was suspecting that I’m a type 1, the “Perfectionist.”  My excruciating struggle with my performance in this class made this pretty obvious.  I’m thinking about doing more investigation regarding Aspergers and the Enneagram.

One day early in the semester, my boss and I got out of the office for lunch.  He could tell I was struggling (perhaps the fact that I was on the brink of tears clued him in).  Bemused, he reminded me that I just have to pass.  I told him the story of the inspirational “Do your best at not doing your best” image on my phone.

do your best

He said, “I have one better than that.  Do your best at the things that matter.”

He then elaborated, talking about the need to evaluate my priorities, and to make sure I’m spending time and effort on the important things, like relationships.  Basically, if I’m getting a lower grade because I’m playing video games, that’s bad.  If I’m getting a lower grade because I’m focusing on doing well at work, and volunteering at church, and investing in relationships, there’s nothing wrong with that.  Even though I had a tough time following my manager’s advice, I’m extremely grateful that he gave it.

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A big revelation came after I received my final feedback for the class.

I had been super anxious about recording the two big speeches.  Like most people, I don’t enjoy public speaking.  But since I was recording this instead of presenting it to live people, that wasn’t the big reason for anxiety.  We were supposed to use an “extemporaneous” delivery for these speeches, having only words and short phrases on our note cards.  That really stressed me out.  Like most people on the spectrum, I can struggle with verbal communication.  I do much better when I have the time to carefully think out how I want to word something.  And when I have that time, I think I do it well.  I like making sure I get the words right to communicate effectively.  That is really hard to do “on the fly,” when I have a time limit in which to speak all of my main points, research, arguments, transitions, etc.

Our professor gave us a good strategy for how to deliver an extemporaneous speech.  We were to write out the full-sentence outline of the speech, then turn that into an outline of key words and phrases.  We could memorize the introduction, since it’s beneficial to have those introductory words “just right,” and it would give us more confidence for the rest of the speech.  But the rest was supposed to be based off of the short outline on our note cards.  She recommended we rehearse from the short outline, starting over again from the beginning any time we faltered and forgot details.  I tried this for the first speech, but as I rehearsed I found that I was really struggling with getting the words right, so I ended up writing way more on my note cards than I was “supposed” to.

For the second speech, I was reminding myself again that I just had to pass the class, which essentially meant I just had to turn in a speech.  Any speech.  Even a terrible speech.  I would still pass.  I had found enough sources to meet the assignment requirements, done a lot of thinking and synthesizing, sorted the ideas into main points, and had written up my full-sentence outline.  I simply didn’t have time to do the full-blown rehearsal to learn the speech, and I didn’t care if I got points docked for the delivery.  So I printed the entire outline on sheets of paper and cut them in half to be more note-card-sized.  That way, I could glance down and see EXACTLY how I wanted to say it.  (As I made edits to the content, I left the original outline file intact, so I could turn in something that was slightly different than what I said in the video, in case the professor compared them.  I’m sneaky like that.)

I recorded my speech two or three times and called it a night.  A few days later, I got the grade, along with this feedback:

“Really good extemporaneous and conversational delivery.”

Wait, what?  I had the whole thing written out!  I thought you said it would be obvious if we were reading from the page? I rehearsed, but in the end I was essentially reading it word-for-word from my printed outline.  How did I manage to fool you?

Then I realized: Oh.  Right.  I’m autistic.

Writing out words before I say them is a coping skill I developed long ago.  I need to call the mechanic to get a few issues looked at?  I’d better write it out.  I’m going to have a difficult conversation with a boyfriend?  I’d better write out some key points, because once the emotions hit I’m going to struggle to remember what I wanted to say and how to say it.

  • For my non-autistic classmates, reading their speech would be obvious.  They wouldn’t sound conversational.
  • For me, trying to speak off-the-cuff from an outline would leave me stumbling over words, pausing awkwardly mid-sentence, and anxious.  I wouldn’t sound conversational.

I was highly amused when I realized that for me to “pass” as an NT giving an extemporaneous speech, I had to use my coping skill of writing everything out.  I then had to fake being spontaneous and conversational in my delivery as I read, which of course is something I have unconsciously been practicing for years!

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To me, this was a good lesson in respecting who I am.  I have to remember that my brain, my struggles, and my skills are not typical.  The path I take to get to a goal will not always look like the path my peers take.  I also learned how fortunate I am to have people in my life, like the managers at work, who care enough about me to give me good advice and moral support when I’m on the verge of a mental breakdown.  Finally, I learned that I’m absolutely done with school for the foreseeable future!

 

Now that the homework is over, I have time for activities I truly enjoy, such as photography.

Now that the homework is over, I have time for activities I truly enjoy, such as photography.

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.

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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.

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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.

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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.

 

Misunderstandings

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

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

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

Here were some of my shared thoughts:

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

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

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

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

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

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

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

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

 

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

Crisis of Faith

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

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

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

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

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

 

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

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

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

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

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Alyssa
Alyssa
Alyssa
On Failing Kindergarten

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

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

Hold on.

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

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

and:

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

I really loved that second quote.

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

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

 

 

 

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

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

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

 

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

Yep.

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

YES.

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

THIS.

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

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

Speechless

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

Bull****.

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

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

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

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

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

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

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

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

free pattern available at Fandom in Stitches

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

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

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