Category: Understanding

A Story of Dysgraphia, Anxiety, and A Middle School Project

8/7/2015

When we were in middle school, Caley and I were both required to draw maps. I mean, free hand draw a map of an entire continent, or a topographic map of Southeast Asia.

Caley and I got to talking about those maps this morning, and she revealed to me that at points she'd been thinking about breaking her arm so she wouldn't have to draw them. She was a MIDDLE SCHOOLER thinking about BREAKING HER OWN ARM.

And my family and I had no idea.

Sure, we knew that as someone with dysgraphia (common in people on the spectrum) writing hurt her - but we never realized it hurt her THAT much. And, yes, I personally knew how anxiety inducing those maps could be for those of a perfectionistic bend - I remember how painstakingly I drew the fjords of Norway and despaired over getting Crimea just right.

But I didn't know. I didn't realize just how bad it was for her.

I'll let Caley tell you the story in her own words:

"They were free hand-drawn maps. We'd do things like the 13 colonies, Europe and Australia. Europe was the worst. You had to draw the coastline and then map within five miles the different cities. And you had to color it in and make it pretty and it did matter how it looked. That's one of the few C's I got in middle school.

It hurt a lot because of my dysgraphia and then it extremely stressed me. I remember hurting myself throwing my pencil up in the air in frustration. The first map I didn't think of it. The second and third maps I definitely thought about breaking my own arm. Because it HURT to write that map. And it was SO stressful. I don't think my meds were really good back then so, along with going through puberty, everything just combined together.

I don't know how to describe it, it just hurts to write. I can do a little bit, but because of the way I have to bend my fingers so that I can have any kind of fine motor control over the pencil it becomes REALLY painful.

I don't think I ever told [other people] it hurt. Although it should have been fairly obvious by how I acted. I often shook my hand out, although that looked like stimming, and I hated writing. Typing was a lot better.

I think they did the maps to attract those into art into learning, but it kind of was punishing to everyone who didn't."

I don't know if there's one single lesson to this story.

Maybe how painful dysgraphia can be?

Or how bad anxiety can get?

The importance of teaching self-advocacy?

Or the way that these moments of anxiety can just go under the radar, because we don't realize JUST HOW BAD it is for the person?

The need for accommodations?

The way an assignment can be so frustrating that a child is thinking about hurting themselves to get out of it?

In the end, I think this story tells all of those and more.

-Creigh

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Meltdowns can be silent

6/10/2015

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I’m attending a workshop about autism this week, and as I’m sitting there the presenter is talking about ‘rage behaviors’ for people on the spectrum during meltdowns. She lists a number of behaviors I’m perfectly familiar with…and gets to one that throws me.

Internalized behaviors. She says that, though our image of meltdowns is of external behaviors – shouting, throwing things, etc – some people get quiet. They’ll just go and hide under the desk and direct their rage at themselves instead of the world.

The presenter said she prefers those with external behaviors, because it’s so easy for the internalized behaviors to go undetected, and therefore go without help.

“Excuse me!” I said, raising my hand. “Could you talk some more about these internalized behaviors. Because I’m wondering if my sister has them. After she’s been getting melty [her term for almost meltdown-y] for a while, she gets really quiet. She won’t let me talk to her and she goes and hides and shuts down. I never realized that she had meltdowns, and now I’m concerned she might have been having them all along.”

I don’t remember her exact response, but the presenter commented something along the lines of how I’d answered my own question.

Later on that day I told Caley what I’d learned and asked her if she realized she was having meltdowns. She hadn’t known, either. “But you direct bad thoughts at yourself during that time?” I asked her. “Yes,” she said simply. “I just really, really, really don’t like me then.” And then she added. “That may be an understatement.”

It’s hard to help someone avoid meltdowns if you don’t realize they’re even a factor. And, though you may not have to worry about accidental property damage or self-injury, internalized meltdowns as Caley can attest to are still a very bad experience, one we want to help prevent.

That’s it. I just wanted to share the signs of, and mere existence of, quiet meltdowns with you all. Do any of you have experiences, yourself or with your child, with internalized behaviors during meltdowns?

-Creigh

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On Anxiety and the Effort It Takes to Climb a Mountain and Make a Phone Call

9/8/2014

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This is going to be a very personal story…one not about autism, but so related to autism that it almost might as well be. You see, anxiety is very comorbid (commonly found alongside) with autism, to the point that anxiety disorders are the second most commonly diagnosed disorders in kids on the spectrum. Those of you who are on the spectrum or have children on the spectrum probably, unfortunately, already know this fact. So today’s personal story to help you understand people on the spectrum isn’t going to be from Caley’s viewpoint – it’s from mine. Because though I’m not necessarily autistic, I do most certainly have an anxiety disorder. (Caley did, however, assure me that much of what I wrote here she could have written herself.)

How do I know I have an anxiety disorder? After all, to my knowledge at least, unless I got a diagnosis as a child and wasn’t told about it, I have never been officially diagnosed with anything. Well, my wake-up call came one night when I was lying down to go to sleep. I couldn’t relax, couldn’t stop thinking about the news stories I’d heard about a boa constrictor killing a child in his bed, a sinkhole swallowing a man whole as he slept. And I had an aha! moment. And I suddenly realized that my levels of anxiety weren’t normal, that most people didn’t have those sorts of thoughts. But it took me decades to realize that.

Thinking back, it all became very clear. I suffered from nocturnal panic attacks (yes, in retrospect I figured out what they were) for years as a child. When I say goodbye to a loved one I always said it like it would be my last (not because of a nice philosophy, but because yes, I am truly worried it might be my last). And I have done battle with fear of flying for years now…and it’s not just being worried about the flight, it is, turbulence = going to die. I can’t watch movies without reading the spoilers for them first, because not knowing what’s coming next just causes me too much anxiety. Even with the spoilers, it’s still a stressful experience. And everyday tasks like just doing the dishes can become so stressful at times because of the anxiety that long-term deadlines causes me (and that does register as a long-term deadline, there is no specific time it has to be done by, but it does eventually need to be done) that they can require me to push incredibly hard just to complete that simple task.

I know none of this is logical, but my mind can’t really respond to logic when I’m battling anxiety. Ask anyone that knows me, and they’ll tell you I’m one of the most rational people that they know. But the part of my brain that is drowning in fear? Yeah, it’s not exactly able to listen to rational discussions.

I grew up battling anxiety for as long as I can remember. Even back in kindergarten, I remember it. I remember opening up my lunch box and seeing the BEAUTIFULLY made sandwich inside, which my mother had taken the time to cut out in the shape of a heart. I loved it when my mother did that. And then I looked around at the other kids’ sandwiches. None of them had hearts. Suddenly, I was anxious. Did having a heart shaped sandwich mean I was weird? Was it against the rules to have a heart shaped sandwich? What if the other kids teased me? What if I got in trouble with the teacher?

I ate my sandwich under the table, where no one could see.

And I experienced the same self-conception that multiple people on the spectrum have told me they relate to. I thought of myself as lazy. After all, how do you explain how I can’t manage to clean my room? Or how I can’t so much muster enough willpower to go and so much as boil some rice and cook up some chicken…or even microwave something for that matter. People told me I was lazy for these things, and I believed them. Because really, what else could explain that?

The funny thing was, though, I knew I was actually, in many areas of my life, one of the hardest working people I knew. My last semester of college I was a student leader for five different organizations and taking 22 credits of coursework – hard coursework at that, the hardest classes I took in college. And during that very semester I also created the Autism Spectrum Explained website. That didn’t gibe with laziness.

Yet, though I’m the same person who is so ‘hard working’ in some areas of my life, some days I don’t feel like I can even leave my apartment. Heck, some days I’m so anxious I don’t even feel like I can leave my bedroom. Cooking, cleaning, making phone calls, these are all ‘easy’ things that I can’t seem to manage to do on the same time line as others. But it has absolutely nothing to do with laziness, and absolutely everything to do with an anxiety disorder that can make these small tasks just about as ‘easy’ feeling as climbing 6000 stairs up a mountain might seem to you. (I’ve done the mountain, actually. Let me tell you, between the effort needed to climb that mountain and the effort I more often than not need to battle my anxiety to simply make a phone call, I would take the mountain any day.) It’s not like this all the time. In fact, in my life outside of home, I don’t tend to have nearly such disabling anxiety. (Although it is always there. Always.) But it is like that a lot.

I'm not lazy. I have a disorder which makes even 'easy' things ridiculously hard at times. I can see how someone outside looking in might misidentify that as laziness, but now I know that it's not.

Within the past year, I’ve been making more autistic friends who also struggle with anxiety. Talking to them was like looking at myself in the mirror. As I talked to them and gave them advice from personal experience, I also opened up about myself and my anxiety for probably the first time ever. And it’s been such a relief, such a journey of greater self-acceptance and self-understanding. Because when you don’t realize that you have a disorder, you blame yourself. Because if you’re not able to do what others do, and you don’t know why that is, yeah, you’re going to blame yourself.

And that is exactly what I did. I hurled criticisms at myself – lazy, silly, ditzy (yes, the ‘ditziness’ is anxiety related – it’s hard for your mind not to be a bit scattered when you’re worrying about your to-do list, your family, that email, your grades, whether or not you locked your car…you get the idea.), what have you. And I believed those things about myself. But when I started talking to friends who struggle with anxiety, my friends on the spectrum? I was able to finally understand myself, like looking at one of those drawings with a hidden picture that, once you see it, you can’t believe you didn’t realize it was there all along.

What’s more, because they get it I actually feel less anxiety about interacting with these friends. Because if I can’t answer an email for months because I am just drowning in way too much anxiety to be able to reply, THEY GET IT. If I tell them how danged hard it was just for me to leave my room that day, THEY’VE BEEN THERE. And even if they haven’t, they have empathy, because they know what it’s like to struggle with anxiety. And it feels so, SO good to be able to be honest about how ridiculously hard I have to fight some days, to be able to share the joy of having successfully done something ‘small’ that was just causing SO much anxiety for me and not have the person look at me with those eyes that say “So what?” or tease me because “That’s so easy!” The only way you get to say that was easy is if you think climbing 6000 steps up a mountain is easy. Because that’s what I just did.

There is not going to be a ‘this is the way to fight anxiety’ kind of post. Because one of the things I’ve learned is, there is no one way, and no way works for everyone. When I’m dealing with anxiety, I have to push through or else is just continues to get worse. Of course, I am ALWAYS having to push to some extent, even when I so much as put a load of laundry in the washer (long term deadline). When you have to keep pushing CONSTANTLY, even low level, sometimes you get to the point where you can’t push anymore. That’s when I run into my biggest problems, because that leads to putting something off, which leads to worse anxiety, which leads to putting it off more, which worsens the anxiety…you get the idea. Every time I take so much as a small break from pushing, I really have to pay for it and push harder later. (This is not license to push me to do things for those of you who know me, by the way. The best way to help me is through support and understanding, like my friends on the spectrum do, not by pushing me – I know how to do that myself.)

But other people are the exact opposite. The more she pushes, the harder things get for Caley. And unlike me, where the longer I let a fear sit unchallenged, the worse it gets, if she simply leaves a fear alone for long enough it will go extinct. Caley and I have a lot of the exact same fears – it comes of growing up in the exact same environment, I guess. But when I see something I’m afraid of, whether it be a terrible thunderstorm or a flight or what have you, I try to push myself to do it, because I know that is my path forward to healing. When Caley sees it, though, she knows herself, and she knows not to push. I know not to push her, because though pushing works for me, it’s not the path that works for Caley. And both of our mutual fears from childhood have become more manageable over time, though we both took completely distinct paths to get there.

This is not going to be an uplifting post and I cannot tell you a cure for anxiety disorders, though I wish I could because I’d take one in a heartbeat. But that wasn’t the point here. The point was to foster empathy. To help those of you who do not struggle with anxiety understand those who do – to show you how anxiety can make a ‘small task’ into a 5,000 foot tall mountain. And, for those of you who do struggle, I hope this post has helped you feel less alone.

-Creigh

[Picture was taken on 泰山 (Mount Tai), one of the five great mountains of China, from a vantage point looking up the mountain at an untold number of steps. I took it while I was climbing up those thousands of stairs...and I assure you, the ones seen in the photo are actually a very small proportion of the total.]

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Spreading Autism Understanding

5/31/2014

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So all the autism gear that I'd ordered from Cafe Press (which has an ENTIRE Autism Acceptance gear page) came yesterday and I'm so excited! I got a shirt that says, "Yes! You can ask me about autism" and both a shirt and a bumper sticker that say "Autism. It's not a processing error. It's a different operating system." AND I got two more bumper stickers, one of which says "Celebrate Neurodiversity" and another of which says "Autism: Different, Not Less."

Why did I post this here? Well, for one thing, I'm super excited about all this (I immediately changed into the ask me about autism shirt and were it not for the rain, I would have put the bumper stickers on my car already). But for another, I think all of these are great examples of positive ways to spread autism understanding, and a far more productive alternative to the more common puzzle piece ribbon or "support autism awareness" t-shirts.

What sets the gear I purchased apart is that it explicitly seeks to help people understand and accept autistic people. When someone who knows little about autism looks at a shirt that says, "Support Autism Awareness," what does it teach them? Well, they learn two things. 1) The wearer knows someone autistic. And 2) Autism is something bad (because why else would you wear that t-shirt?). That's it. That's all it teaches. It may spark a conversation, in which the wearer could educate the other person about autism, which is a great way to spread understanding, but if that's your goal, better to wear a shirt that says, "Yes! You can ask me about autism!" You're more likely to spread understanding that way, since you're explicitly inviting people to talk, and you're also not sending the negative messages (because, really, you never see "awareness" shirts for anything good, it's always something bad).

All of these seek to get people questioning what they think they know about autism, get conversations going, and send anyone off who has seen them knowing a bit more about autistic people than they first did. And that's why I bought the gear in the first place.

If you're interested, by the way, here's a link to the page where I found them:http://www.cafepress.com/+autism+gifts. I am not at all affiliated with the page, just passing on the link. Diary of a Mom also has some great shirts herself. You can read her blog post about them and check them out here (http://adiaryofamom.wordpress.com/2014/03/27/wear-the-change/). The title of her post was, "Wear the Change" which I think was very appropriate.

-Creigh

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Conversational Minefields

5/24/2014

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Originally published: 5/19/2014

So last night the family and I were visiting a relative's house and someone (neither Caley nor I) brought up the subject of mainstream education, as in whether or not students with disabilities should be allowed to take classes with other students.

Caley and I both immediately tensed - Caley because this subject is very triggering for her, considering her elementary school tried to kick her out when she was in fifth grade (despite the fact that she was an honor roll student), and me because, well, I know how triggering it is for Caley. Immediately I, of course, tried to change the topic...but succeeded only in changing it from schools to autism itself, which is potentially even worse!

Bless our grandmother, she actually handled it well, listening to what Caley and I had to say and mostly avoiding offense. But it made me realize what a minefield such conversations are to navigate for people who don't know much about the disability and/or autism community. They don't know it, and even I didn't think about it until last night, but one wrong step, even saying something that most of the world sees as just common sense, can actually be very upsetting and offensive to their audience.

I took several lessons from this conversation. First, giant kudos to our grandma for navigating that conversation without incident. It's a lot harder to do than you'd think, and says a lot about her that she managed to do so. Second, we need to educate the world at large, but especially the friends and relatives of Autistics, who are likely to run into these issues more often than others. And finally, we need to be understanding of people when they do accidentally step on one of these proverbial mines. We should correct and educate, yes, but always with compassion. After all, if we've never taught them any differently, how would they know?

-Creigh

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Understanding: The Bridge Between Awareness & Acceptance

4/2/2014

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I have been wanting to write this post for the longest time and today, World Autism Awareness Day along with World Autism Acceptance Day, seems like the most appropriate time to do so.

First, some background. There are two loose, informal sub-communities within the autism community. I already talked about them more within the website, but they include a "pro-cure" camp and a "pro-acceptance" camp. These camps divide the community and, almost like political parties, one's feelings towards either camp generally line up with positions on a variety of autism-related issues, from treatments, to research, to organization.

The reason I gave you this background is that this schism applies to Autism Awareness Day vs Autism Acceptance Day, too. The pro-cure supporters mostly line up with Autism Awareness Day proponents. And Autism Acceptance Day was created as a pro-acceptance alternative and generally intended to be a direct counterpoint to Autism Awareness Day.

To choose to support one cause, awareness or acceptance, is generally to choose to deny another. And so here I stand, stuck in the middle because I support both causes. I support autism awareness, not the cocktail party "1 in 68" kind, but true awareness of the existence of autistic individuals towards the goal of helping children get diagnosed. Granted, I believe the importance of this goal is waning in the United States, as we've done a superb job of making people aware of autism's existence here, but as someone who has traveled abroad, I strongly feel that autism awareness is a critical cause in other countries I've visited, like China.

Yet I support autism acceptance as well. Because I look at what my sister needs and wants and what the children I've cared for over the years would benefit from, and hands down the answer is acceptance. Acceptance, as they say in the community, is an action. It's seeing the autistic individual in front of you and still giving them all the accommodations and therapy that will help them - but at the same time, it's valuing them for who they are. And that is one of the most important gifts you can give any autistic person.

But more than either one of those, I support a third cause, that of autism understanding. Because understanding is the bridge to acceptance. After all, if you're merely aware of autism but think it's a symptom of a disease separate from your child, or that your child is "trapped in their autistic world" a terrible world from which they can emerge if only you find the right treatment, when told that you should accept your child as autistic you're more likely to scoff or even react with horror at the notion than to do so.

I guess what I'm saying is, there are three causes in the autism community: Awareness, Acceptance, and Understanding. Here in the United States, we've done a great job with awareness and we're moving on to acceptance, but before we can get there we need the bridge of understanding to guide us. Thankfully, I think that's a cause that anyone in the autism community would be proud to stand behind.

So this month, I'm going to devote myself to the cause of Autism Understanding, along with Autism Awareness and Autism Acceptance. Each day I'm going to share a new photo that promotes understanding of autistic individuals and seeks to combat stigma and false ideas about autism. Feel free to share mine or make your own.

Together, we can make the world a better place for autistic people.

-Creigh

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A Story of Dysgraphia, Anxiety, and A Middle School Project

Meltdowns can be silent

On Anxiety and the Effort It Takes to Climb a Mountain and Make a Phone Call

Spreading Autism Understanding

Conversational Minefields

Understanding: The Bridge Between Awareness & Acceptance

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