Hiding

This is beautiful and amazing and I relate to so much of this. It’s so so risky to put any of yourself out there, and yet we keep doing so. Bless you, Erin. This is an awesome post.

Erin Human

When I was 11, I had a crush on a boy who was a year younger, a boy from my church, and we also went to school together. Liking a boy in a lower grade than oneself was a thing that was simply not done, and so I concealed our puppy love, until it came out, as such things always do. My friends at the time both teased me for going out with a fifth grader, and embarked on a mission to flirt and lure him away from me. They had me coming and going, mortified, jealous, and exposed.

But that’s only kid stuff. Not like the time in college when I broke out of my usual mode of strict privacy in an attempt to bond with some girlfriends, trying to copy the way they forged their social bonds, by participating in a frank sexual conversation. And then one of them…

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Routines

So one thing you should know about me as an Autistic person, and this might apply to others, but I don’t know that it’s totally widespread among the Autistic population, is that I am pretty tied to my routines. They’re essential to how I function in the workplace, and they’re essential to how I function at home  (the latter helps my kids, too – knowing what to expect on a day to day basis is important to them, too).  I don’t do well when they’re interrupted.

I work a really good job for me.  I’m the cook at a local preschool (that provides childcare and education to kids from 6 weeks old to 5 years old).  It is a far cry from my last job, which was very social intensive, and could vary quite a bit.  There were ways of doing things, but if something came up (like a bus full of high school athletes pulled into our parking lot, for example), we had to roll with the punches, as it were. But now, I spend a lot of time in my own space away from people, and a lot of my work is solitary.  I’m very set in my routines.  I’ve been there for just over two months and I have my own way of doing things and in my own order.

But as I cannot stay for 10 hours a day, and as we have an inspection coming up soon, they sent me someone to help with the order today, and to help go through what I need to focus on for the inspection.

This is good! But this is also bad.

It’s good because yes, I need the help in order to get everything in order, because this is the first corporate inspection I’ve had, and I need to know what to expect.

It’s bad because my brain is going “holy crap I don’t know what to do here because I have this way of doing things and now you’re moving stuff around and what if I can’t find things? And ack, why are you moving that around? It’s been there since the first day I worked here, and why are you doing that?”

Breathe.

I’m grateful for the help, I am.  I am just having such a hard time getting my brain to cooperate and believe that this is 100% a good thing.

Next time, I wish I had some notice.  Or I wish she would have come to me when it was spring break (like I had asked) when I could have stayed for longer because I had paid for childcare for the entire week, from 6am-630pm if I had wanted to stay that long.

But this interrupting me at 9:45 am, and again at 1pm, and moving things around and now I don’t have places for things I did have places for before? I don’t know.  I’m frustrated.

And it’s easy to go “@#$%# neurotypicals!”

But I know it’s not her fault.  It’s not even the office’s fault. It’s just that I need to be more explicit about accommodations and what I need.  It means that I need to say “you need to write down what you want me to do with these things” instead of them sending someone in to help.

Tomorrow is another day.  The order is put away, so hopefully she’ll just have some notes and I’ll get everything in order.

The world will not end because today, my routine was interrupted.  I will adapt, and I’ve told myself the truth – “you’ve dealt with worse.”

It’s April again, and I want to tell you a story…

 

Today is World Autism Day, and for us Autistic people, it’s Autism Acceptance Day.  That means that many of us are using hashtags like #redinstead (which used to be #walkinred – I used both) and #toneitdowntaupe.

redinstead shoes

[image description: a photograph feature a person wearing a pair of red Converse-like shoes and a pair of blue jeans.  A tan patterned rug is shown underneath the person’s feet]

It’s been about four years since I first started blogging about autism, and I’ve noticed some interesting things.

Facebook has this app where it will show you what you were doing or posting on the same day a year, two years, etc. ago.  It’s sometimes fun to go back and see what you were doing on those days.  It’s sometimes heartbreaking when you see photos of people who aren’t in your life anymore.  It’s sometimes interesting to see how far you’ve come.

The past four years, my timeline has been filled with posts from Tone it Down Taupe and Walk in Red.  I have some fantastic activist friends who have shared a bunch of things with me, and whose posts I have shared on my page.

But I didn’t always know what I know now.  I’ve had Facebook for much longer than four years.  So looking back on some of those days is distressing.  One year, I lit it up blue.  I don’t think I knew back then that it was to do with Autism Speaks.  I definitely knew by that time that Autism Speaks was no good, but I didn’t realize that Light it Up Blue was basically supporting Autism Speaks.

I’ve learned a lot since then, thanks to a lot of reading (I was always good at that) and some patient people who got me to see that “uh, no, this is not quite as good as you think it is, and here’s why”.

It’s part of why I’ve begun in the past year or so to at least attempt to gently, kindly educate when I can, when it is possible and it’s clear the person is at least trying .  I’m not perfect.  I sometimes lash out when people use really awful language to discuss things that are pretty much absolutes (like, YES! All autistic people deserve dignity and to not have their care needs blasted all over the internet by their parents and caretakers).  I have certain triggers, and I’m sorry, but I have a hard time taking you seriously if you refuse to read the information I provided (or at least start a Google search on the topic and read a tiny bit before demanding that I educate you).  But I am trying, a lot more than I was in the past.

I remember what it was like to be ignorant.  When my daughter was diagnosed definitively at age 3, the first resource that the doctors pointed me to was Autism Speaks.  I wrinkled my nose at some of what I read, and I decided that Google was a better idea, because I was not liking some of the language that I encountered.  Comments about grief upon obtaining a diagnosis were so jarring to me because I knew something was different from the time my daughter was 14 months old.  A diagnosis was confirmation of what I already knew to be true, not a surprise or a shock or something that was causing me grief  What a foreign concept.

Luckily, I never got too far into Autism Speaks. I didn’t jump on the cure train, that’s for sure.  I wanted my kids to have the best life possible, and I knew that began not with therapies to change who they were, but with educational tools to help them learn in the way that was most comfortable for them.  Eventually, all of this acceptance and understanding and learning about my kids and how their brain worked made me realize that oh, I wasn’t so normal after all, and oh, they’re taking after me .  That journey of self discovery is something I’ll talk about another time, but it began when I was 27 and ended definitively with my own diagnosis when I was 30, which was nearly five years ago.  Once I realized that I was a lot more like my kids than I was like the neurotypical people I knew, autism stopped being this bogeyman and I realized that no, not all parents know their kids and their triggers as instinctively as I did.

For instance, I hated Walmart for all of its sensory obnoxiousness, and my kids did too.  I figured this out fairly quickly and we did some online ordering, some shopping in other stores.  I knew that the lights and the noise and smells bothered them, because they bothered me.  I could see them react in the same way I was.  I had just had 25+ years of being told that I was overreacting and finding ways of mitigating the pain of sensory overload, so I got us all out of there fairly quickly.

It still took a couple of years after figuring out that I might be Autistic for me to say that out loud, for me to identify that outside of my personal blog (not this one), and it still wasn’t until this year that I was fully confident of being “out” about being Autistic with everyone I encounter on a daily basis.

So having said that, I’m trying to be kind to those I meet.  I’m trying to help form this bridge of knowledge between those whose kids have just been diagnosed and activists (both autistic and not) who have been in the trenches for decades.

April is a hard month for a lot of us.  We can’t go outside without encountering something related to Autism Speaks and lighting it up blue.  So please, be kind, think about what you’re posting and whether an Autistic person would be helped or hurt by it, and please at least start looking up information on a topic before you demand that an Autistic person educate you about it.

Please feel free to connect with me on my facebook page here. You can also message me there.