Social Moth

Performance reviews stress me out.  As a perfectionist, I’m constantly seeing ways I could be doing a better job, even though I often recognize that I am trying really hard.  Our organization uses an annual review system that includes setting goals with my supervisor, putting in notes before the mid-year check-in and the end-of-year review period, and meeting with the supervisor to discuss it all.  He also puts in notes related to my performance in different areas and my success at meeting the goals we set.  At the end of the year (in our case, June), he rates us on whether we met, exceeded, or did not meet expectations.

My boss is great.  We get along really well, he challenges/encourages me to continue growing, and he often tells me I’m doing a good job.  Nevertheless, anticipating any kind of criticism (even the gentle, constructive kind) is nerve-wracking.

When it was time for my review meeting, my boss said that he wasn’t going to do the whole formal routine in our meeting, because he feels like we talk about how I’m doing all the time.  He said I’m doing awesome, and that he’s giving me the “exceeds expectations” rating.  (This Hermione is fine with that, because there is no “outstanding” above it.)

He said that some of my peers are jealous of me, which was quite surprising to hear.  They think I get to do a lot of the “fun” stuff.  He said he asks me to do a lot of those more interesting things because he knows he can rely on me to do it well, and that I’ve earned it by doing other tasks well.  He also acknowledged that a lot of what I do isn’t fun or easy, but people don’t realize that it isn’t fun and easy, because I don’t let on.  He said that other people (like his boss) will say, “Oh, send her to that; she’s your social butterfly!”  Then he said something that I appreciated so much.

What they don’t realize is you’re actually a social moth.  You fly by quickly and they *think* you’re a butterfly, but really you’d rather be flying around at night when nobody is around.  (That’s pretty good, huh? I just made that up!)

The Clearwing Moth is commonly mistaken for a hummingbird. Unlike the Social Moth, which is commonly mistaken for a social butterfly.

I loved that.  Not only do I love that “social moth” fits me quite well, but I love that my manager understands that about me now.  He sees it, he acknowledges that things involving people are hard for me, and he continues putting me in situations where I will be stretched but also have support.  For example, when I had to present to our department’s leadership team about some “tech tips” he and I have been writing together, he sent me a chat after the presentation.  “Good job by the way, you kicked butt. 🙂 I know you don’t like speaking in groups, but the PowerPoint was great, your talking was great, just fantastic all the way around. I am very proud.”

His comments about what others have said also reminded me of how good I am now at “passing” when I’m at work.  What’s amusing to me is that he used to call me a “social butterfly,” too.  I clearly remember one conversation, when we were talking about high school and the performing arts.  I said my sister was the one up on stage starring in the musicals, loving the spotlight, not me.  He was surprised by that!  He said something about me being so outgoing.  I chuckled and said quietly, “That is the act.”

 

 

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

 

A Good Change

Hi blogging friends, I’m still here!  I’ve been quite busy, and though I’ve had many ideas for posts, I simply haven’t had the time/energy to sit and write.

To get things rolling again, I’d like to talk a little about some of the reasons I’ve been so busy.  I’ve mentioned before that I have been taking online classes.  This summer, I got a full-time internship while taking 2 classes.  Combine the stress of getting up early and working full days at a brand-new environment (with new norms and new responsibilities and new people) with taking two writing-intensive classes as a perfectionist (I take forever on writing assignments) and I was STRESSED.  I was really on the verge of a breakdown multiple times.  Mom told me she was ready to kill me once, and Dad had to talk her down.  I had no down-time for relaxing with a favorite show or working on a sewing project or visiting my best friend.  That isn’t healthy for me.

Lots of computers

IT intern life.

But. . . this internship is the one that a guy at church told me about a year before, and I had really hoped to get.  Not only was it an excellent learning experience, but it is leading to full-time employment.  I’m amazed at how much better this workplace and work are for me.  My confidence and self-esteem are slowly being built back up.  I’ve joked before that in making this career change, “I’ll still be working with autistic people – they’ll just be my coworkers instead of clients.”  It turns out, my years of hard work at practicing social skills and having to teach them to kids have paid off.  In this field, I actually stand out as having good social skills, instead of other fields where I’ve been surrounded by NTs and been the “weird” one in a bad way.  It’s all relative.

office box fort

A grown man (with grey hair) built a fort. A box fort. At his cubicle.

Not only am I surrounded by people who get my geeky references, quote the same kinds of shows/movies, and appreciate a good special interest. . . but I can bring sensory objects to work for myself, and instead of getting weird looks I get jealous ones!

office toys

Personalizing my cubicle – complete with a visual stim toy!

I brought in a little tin of Thinking Putty.  My best friend gave it to me years ago, but I didn’t use it much.  Then, I discovered that I needed a quiet fidget at work, and I fell in love with the putty.  So did my coworker, who kept asking me about it.  Finally, I just ordered a multi-pack of mini-tins from Amazon.  Three of the other interns and that one coworker signed up to buy it from me before it even came, and I sold/gave tins to three more coworkers shortly after that.

Thinking putty

Assorted putty

 

They joked about me being a “putty dealer”  . . . so when demand increased for more and firmer putty, I decided to order a pound to save everyone money.  I even bought little tins from Amazon for them to keep it in!  I’ve already sold a few ounces.  There are 9 or 10 of us playing with putty in the office now.

11667513_844219959962_4612074650803553307_n

“Breaking Putty”

 

But enough about the putty (which really is awesome.  Check out Crazy Aaron’s website).  I have a number of ideas for posts, which I will hopefully get to soon.  During last school year, I had the chance to talk to my client’s 4th grade class about autism, being different, and kindness.  I’d love to try to type up a recap of the conversation, because it was a really good one.  It gave me hope for the future.  I also have a rough draft of a post about favorite fictional Aspies.

On Birthdays and Measuring Years

30. 1. 20.

We attach so much significance to our measurements of time.

I recently turned 30.
It’s been 1 year since I realized I have Asperger’s.
Jars of Clay is celebrating 20 years as a band. (Their new album is excellent, btw).

Jars 20

30. I don’t feel 30, of course. I’m not sure what 30 is supposed to feel like. Of course, life doesn’t look the way I expected it to look at 30.

One thing I wanted to write about was my birthday, and how it was an example of what I’ve learned over the past year. Here comes the Aspie problem of not knowing exactly how much back-story to give. . . to be brief, my 28th birthday was very sad and emotional because of a relationship situation. The next year, I planned to have a better birthday. I even had a party for the first time in years, complete with goodie bags!  Some of my favorite people came to visit, and the house got noisy when some family friends were in town and came by also.  But another relationship situation went down shortly after, which ended up tainting the weekend.

So this year I was back to not looking forward to my birthday.  Since the previous two were tainted by guys, I decided to not even mention that my birthday was coming up to the guy I was chatting with online.  Every time I thought about my birthday coming up, and tried to decide what I wanted to do (such as invite people over) I would just want to cry.  My very wise best friend encouraged me to “do something fun . . . like eat ice cream for breakfast, don’t do any school work, and watch HSM3 or Darren Criss.”

I took her advice.  (Well, I saved the HSM3 for the next weekend when she was coming to visit, and I had a different dessert for breakfast.)  I went to my morning work session, then relaxed at home with my parents and watched some movies with them.  Mom made delicious food.  I got a few thoughtful gifts from my family.

My bestie sent me this shirt. Link and Harry are my homeboys.

While some might see my change in behavior as “giving up” or withdrawing, I recognized it as growth in understanding and accepting myself.  Ever since I was small I have loved the *idea* of a party, but the party itself was often problematic.  I have a hard time splitting my time and attention properly when I’m with multiple people.  I have to be constantly “on” socially and concerned about how people from my different circles are getting along.  It can easily get noisy and overstimulating.  There’s the inevitable disappointments (too often I ended up crying in my room at parties) and the stress of opening gifts.  Tangent time!

I hate opening gifts.

I have theorized that this goes back to getting things like Barbie dolls as a child from people who don’t actually know me (like if I invited a classmate to a party and their mom never met me).  Talk about disappointing!  Like most people on the spectrum, I was never good at hiding my emotions and lying.  I know I’m supposed to act happy and grateful when I receive a gift, but that is SO HARD when it’s a disgusting magenta box with an ugly doll inside.  (I used to avoid the magenta toy aisle at all costs; I thought about taking a picture of one for the blog and decided it’s too awful, so I’ll skip it.)  So imagine it – being a little kid, excited to see what new toy is under the wrapping paper, but then seeing the hot pink and feeling seriously disappointed while having an audience – including someone who will feel sad if you show your disappointment, and you don’t want to make them feel sad.  It’s not fun.  And while I slowly got better at acting thankful, that trepidation still accompanies every wrapped gift and every surprise.   (Second tangent – I don’t like surprises. . . unsurprisingly, my relationship with a magician did not end well).

</tangent>

So, instead of stressing about organizing a get-together that would inevitably stress me out, and thinking about all the ways my birthday could be different, I decided to honor who I am and what I actually enjoy, and give myself the gift of a relaxing day of good things.  And I got to have other good things to look forward to, like my best friend and her family coming to visit and the arrival of the not-yet-available LEGO Mini Cooper my parents wanted to give me for my birthday:

LEGOS!

This was one birthday toy that did not disappoint! My inner-child was SO HAPPY.

Insights on Life from the Legend of Zelda

On this lovely Sunday evening I was trying to decide how to spend my last few relaxing hours.  My sister brought home our old N64, and I’ve been thinking about playing that. . . and I’ve been listening to some great Zelda remixes (from ocremix.org) while studying. . . so I had Ocarina of Time on the brain.  I thought I’d share something I wrote a few years ago.

Back in 2008 I was a nanny, and the two little boys LOVED to watch me play my favorite old N64 games.  They were occupied and happy, I was having fun, and I was getting paid.  (Michael Scott might call that a win-win-win).  One night I composed this and shared it on facebook as a note.

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Tonight I was daydreaming about The Legend of Zelda. . . not surprising, since J. has me playing two hours a day. I finished Ocarina of Time, so now I’m playing Majora’s Mask. It’s a bit trickier, because it takes place over three “days,” after which you go back in time (with some of your items) and everything is reset to the first day.

Anyway, J. is really anxious for me to ride Epona (the horse) again. I read online that in order to get Epona, I have to help a girl at the ranch. To get to the ranch on day 1, I have to clear the road with a big bomb. To get the big bomb, I have to buy it in the town store, but first I have to complete a “training” thing. To get to the training place (which is miles away), I have to melt the ice blocking the door. To melt this ice, I need fire arrows. But to get the fire arrows, I have to beat up some baddie in the snow temple.

I was thinking about this, and the other items that I want to get that make the game easier/more fun. I was thinking about how annoying it was that they take so much effort to attain. But then I realized: that’s life. What we need to make it through, or to make the journey more enjoyable, isn’t given to us from the beginning. We have to save up our money to purchase it; we have to receive it as a gift; we have to earn the skill with practice. These things come from hard work and perseverance, friendship and powerful supernatural beings.

And besides, the challenges of attaining these things aren’t to be completed before “beginning” the game – they ARE the game. That is what living life is about – growth, becoming more Christ-like, improving our minds and relationships and skills.

Oh, and music has magical power. That’s another important Zelda lesson 😉

Pillows made for the boys, from the free patterns on fandominstitches.com

Pillows made for the boys, from the free patterns on fandominstitches.com

Ordinary Acts of Bravery

Today I was forced to confront scars I still have from my childhood experiences.

At work I have been stuck in a situation where I don’t agree with how a student is treated by the adults, yet I don’t feel like it is my place to address it.  It isn’t my classroom (my agency emphasizes to us that we are guests in these classrooms), it isn’t my client. . . but my heart aches for this kid.  A woman I work with was actually crying about it the other day.

One of my client's visuals from last year.

One of my client’s visuals from last year.

Why haven’t I said anything?

1. It’s not my place; it’s not my classroom; it’s not my client.
2.  I have “fear of man” issues.
3. I have no authority there.
4. I’ve tried modeling appropriate interventions and making subtle comments, which have been dismissed.
5. I give people the benefit of the doubt, and at first I wasn’t sure how this child was behaving in other settings, and if stricter interventions were maybe appropriate. (I’ve seen enough to say now that they are not.)
6. I don’t have the social skills to diplomatically start that kind of confrontation. . . I need to continue working with these people, and I am afraid of “rocking the boat” and creating a hostile environment.
7. I thought about printing out articles and leaving them in there, or filing a “bullying report” to the principal, but there are only a few adults who would know about it, so I couldn’t pull off a true anonymous action.

But then today, in considering talking to a teacher about it, I realized another deep reason.

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I became painfully bored in school in 4th grade, so my parents and I decided to try the local Christian school, where we were told I would be able to work at my own pace.  I wasn’t, actually.  But worse than that, I was no longer with peers who had known me for years.  I was the new kid in a small school where the kids had known each other since preschool and weren’t kind to outsiders.  This is where the bullying began.  It was never physical, just verbal and exclusion.  Because I wasn’t getting much more academically out of it, we decided I’d go back to my public school to get re-established with my class before we went to the junior high, where the four elementary schools combine.  Out on that blacktop play yard (that I had struggled to photograph years before) we had recess.  And I saw three girls, one of whom had been my best friend in kindergarten, being teased.  I had just come from a year of knowing what it felt like to be the outsider, to be teased.  So I tried to stand up for them.  And it backfired brilliantly.  I became the fourth target, and I stayed one.

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What does this have to do with today?

My 6th grade teacher was standing there.  Every day.  She was over by the door, watching the kickball game or chatting with another teacher.  She was there.  She should have seen.  She should have heard.  She did nothing.  And I thought, “What good would it do to tell a grown-up?  Won’t it just make it worse if they try to tell them to stop?”  So I kept quiet.  I rarely talked to my mom about what was going on, because she would have talked to the teacher, who I was afraid wouldn’t do enough and things would be worse instead of better.

Fast-forward.  I still have no faith that the powers-that-be will help.  I’m afraid it will just make it worse.  I’m afraid.

I’m afraid.

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A few weeks ago I read the Divergent Series.  That could be another blog post, since I found the topics of genetics and society pertinent to the issue of autism. . . but for now I’ll just warn any other sensitive souls away from reading them.  I did not like the ending.   Regardless, today I was reminded of a quote from the Dauntless faction’s manifesto:

“We believe in ordinary acts of bravery, in the courage that drives one person to stand up for another.”

After months of getting extremely emotional about this situation, and even asking for prayer from my Bible Study group, I decided to talk to a trusted teacher.  Not only do I greatly respect her, but I knew that she would agree that what was going on was not okay.  Today my schedule opened up to chat with her while her students were at gym class.  She validated my thoughts and feelings.  She said she would ask another educator for advice about the situation without naming names, and she would let me know what the next step should be.

I’m finally taking another stand against bullies.  But this time I have a teacher in my corner who is going to do something about it.

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.

 

 

 

Happy Holidays

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

Pie

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

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

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

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

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

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

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

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

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