Torn between two worlds

I warn you now that I don’t know where this is going.

I was at a new friend’s house the other day after bible study.  She took one of the poems I wrote and worked it into a song, and she was playing and singing it for me, so we (staff and I) were at her house.  What a nice lady, and a beautiful, gifted musician she is.  She has such an infectious smile, infectious joy.  Anyhow, while we were there, she said something like, “Now, I know you have autism, but I certainly can’t tell!  How does it affect you?”  And in the past, that would have ruffled me, maybe quite a bit.  But this time, hearing the love in her voice, I just said, “Thank you,” and my staff mentioned that I hide a lot, which is true.  We talked a little about sensory issues, too.

I try to get my mind around this.

Why, when student teaching, was it repeatedly brought up that “she can’t connect with the kids”?

Why, last year, were there threats of a group home?

If I present so very mildly, why can’t I function without staff 4 days a week?

Why?  What’s the deal?

I tend to think that I have a kind of incredible ability to cover up.  I don’t let my sensory issues show.  Sometimes my own family can’t tell I’m overwhelmed until I completely shut down or lash out.  Heck, sometimes, I can’t either.  I think, if you knew what to look for… the body language and the far-off focus in my eyes… the frozen postures and darting glances… you might be able to tell.  Maybe it happens in such a way that no one on the outside can see it… but I wish they could, because I can feel it!

Of course, if pushed far enough for long enough, I will completely shut down, stop talking, unable to process language verbally.  Or I will lash out, screaming and crying and throwing things.  But you know, that’s no fun for any of us, so I really try not to do that.

My communication ability is improving.  I’m focused on two main things right now.  One is to label my emotions, especially when with my staff.  I tend to think, though, that if you know me well enough, and you type with me, I’m a pretty darn open book when it comes to what I’m feeling.  Ask, Leigh, and Heather, ask my sister… they get it all.  But fact is that I need to be able to express, to some degree, my emotions verbally, too, so I don’t get so frustrated.  I do still tend to growl or slam my hands on the desk when I’m frustrated (can you say “checkbook”?), but I’m trying to say that I’m frustrated.  I’d say we’re 50/50, right now.

The other thing I’m improving with is attending to topics of conversation which aren’t my preferred subjects.  I have a long way to go here, but I am, as I said, getting better at it.  My favorite thing is when my staff are talking together and I’m trying to keep up, and they stop dead and say, “Lydia, can you think of a question to ask us?”  It gives me time to process.  And you know, I usually can come up with something… it just takes me more time.  We’re going to do an activity where we put topics of conversation in a box and pull them out, so each person can list a couple of her favorites, and then we pull them out and talk about them one by one.  So, one time might be cats, but one time might be something I know or care little about.  This is part of functioning in the adult world, and I look forward to improving my skills.

I think, at this point, the deal is that when you meet me, you don’t first think “autistic.”  You might not think anything.  And if you talk to me for a bit, you probably think, “Hm, she seems kind of young for 24.”  But since the ladies at church and whatnot are older than me, ten years, twenty years, fifty years… I’m not sure they have a good hold on the fact that most 24 year olds are pretty adult.  Thus, me acting more like I’m a older teenager, maybe 16-18, doesn’t stand out to them.

But that’s just a theory.  The important thing is that people at church just love me and lift me up for who I am, labels or not.  I wish that for every person on the spectrum!  To be loved and encouraged for being who they are, beyond any labels.


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