Category: Caley's Posts

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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Self-Advocacy is Only Half of It – On the Importance of Listening

7/17/2014

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So I may have had a minor freak out on my sister in the parking lot of a restaurant the day before my dentist appointment when she reminded me about it. I told her that I had tried to say I didn’t want to go to the dentist, that I hated them, and that I really didn’t want to go because it HURT. Plus, truthfully, I was a little bit scared. She told me that I could advocate for myself at the appointment and that if I didn’t want to, I didn’t have to go. So I went.

Now, my fear and hatred of dentist appointments and all things to do with teeth have several roots (no pun intended). For one thing, I once had baby teeth that needed to be pulled, and I remember the dentist putting his knee on my chest to pull it out. It hurt a lot and I kept on spitting blood, but no one seemed to think there was anything wrong with that. Seriously, he should have figured out that by the time he had to put a knee on my chest that maybe we should reschedule an appointment and come back later when the root had dissolved more.

My other issue came from my orthodontist. For one, they never really thought that my cheeks being torn up by the orthodontia to the point that flesh in my cheeks was hanging and bleeding. I had had my tongue drilled through once as well (by accident while they changing out some of the orthodontia). Seriously, I was eight or twelve at the time, they should have expected my tongue to move.

But the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me.

Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.

While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. [Creigh’s addition: And, really, in what world is bullying to be taken seriously, but someone telling you they're in serious pain is not?!]

So, yet again, four days ago I had to attempt advocacy about my mouth…with my mouth (joke intended). I told the dental assistant about how I had a sensory disorder and that brushing my teeth and especially flossing really hurt, and that she wasn’t to floss me. She kept arguing that it wasn’t sensory, it must actually be me grinding my teeth, like she knew my body more than I did. But finally she conceded and said she wouldn’t floss me, and was kind enough to give me numbing gel while she did her work.

Unfortunately, she then decided that it was okay to floss me. I don’t know why I didn’t speak up about that. Sometimes self-advocacy just feels like wasted energy. Because after you advocate for the first time and they won’t listen, you know they won’t follow your wishes at all. I’d hoped that would have ended when I became an adult, but it didn’t.

I went off, disappointed. Yes, my teeth were clean, but my wishes weren’t respected. And the numbing gel hadn’t changed the fact that I could feel every scrape against my teeth, taste the blood in my mouth, and hear the high pitched whirring of the tools.

At the end, I dared to ask her, hey, look, do you know of a toothpaste that doesn’t hurt? And she decided I was allergic to an ingredient in toothpaste. At that point, I felt too cowed to be able to correct her. So I didn’t get the information that I needed.

Afterwards, I shared the information with my sister, and Creigh shared with me that the receptionist had asked her if she would sign my HIPAA waiver for me, or if I was competent enough to do so myself. I’m freaking twenty years old. I’m an adult. Yes, I’m competent.

Unfortunately, this sort of issue has followed me around in all sorts of areas. Including medical, where not advocating for yourself can be an incredibly big issue. Multiple of my doctors have not listened when I told them I did not feel comfortable taking certain medications. And I felt cowed into accepting the prescription. Even though I tried to argue, they wouldn’t even listen. They just bulldozed over me.

So, like the girl in the orthodontist’s office so many years ago, I had to take matters into my own hands. I simply didn’t take them. Or I’d try taking the medications and then stop taking them by myself. Which led to dangerous withdrawal effects more than once. Because I didn’t feel like I could tell them I wanted to stop and have them listen to me.

All of this could have been avoided if I was listened to. Self-advocacy is only half the story. You have to have someone to listen to your words. Otherwise you just stop advocating. Because what’s the point?

So do us Autistics a favor and please listen to us when we try to advocate for ourselves? Because it’s really hard and because we’re going to have to be doing it for the rest of our lives.

-Caley

[Note: Post dictated by Caley and typed by Creigh, but these are all Caley's words. Image is of an array of dental tools on a tray.]

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I'm Not a Burden & Neither Are You

7/11/2014

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A lot of people in the Autistic community and those who support the Autistic community often forget how the same issues that affect autistic people also affect other neurodiverse people. Many times neurodiverse people can feel like they're a burden because they're made to feel that way by their society, culture, peers, etc. What can make it worse is that sometimes being neurodiverse may mean that we contribute to society in different ways.

Unfortunately, many in society do not see our contributions as being contributions. You don't need a job to contribute to the world. You can contribute just by being there, by giving a smile, by teaching society how to think and understand differences, by helping give society a purpose.

People need to remember to not let society say that these aren't contributions. People need to remember that even if they contribute in different ways than what society normally talks about, that is still a contribution and they should not feel like a burden. And those who are neurotypical should recognize these contributions and try to help society as a whole see them, too. And make sure to confront the idea that contributing differently makes you a burden.

-Caley

[Post dictated by Caley, transcribed by Creigh]

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Presuming Competence: What Autism Professionals Need to Know

5/26/2014

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Just because we’re Autistic and we’re not supposed to be able to read things, that doesn’t mean we can’t tell that you’re presuming our incompetence. I had to go to a lot of so-called “professionals” when I was younger. They would spend our lessons teaching us using “happy faces” and “sad faces” and asking us which was appropriate for the time. It was incredibly boring, and I knew which was which very easily, but they never moved on. I was in elementary school the first time I ran into that exercise, and they were still using the same thing on me when I was in high school.

I also was constantly assumed to be a parent of an autistic person, as opposed to an autistic adult, when I interacted with autism organizations. I remember I got in contact with an autism organization, which I'm choosing not to identify. I had been forced to get into contact with them when I talked to professionals asking them for help dealing with an issue and they assumed the fact I was autistic was at the root of my problems, even though I kept telling them again and again that wasn’t what I was having a problem with. When the representative called me back, they were asking me about “my child” the entire time. “Are you the parent of Caley?” they asked me. I just hung up, because I didn’t know how in the world I could respond to that. Apparently it was assumed that an autistic person would not be competent enough to make the phone call.

A year later, I had another run in with the same organization, having endeavored to give them another chance. When I asked for help, they assumed I was asking about volunteering opportunities, not asking for help for myself. It was assumed that a university student could not be autistic. When I saw the puzzle piece logo, which was on all of their material, I told them that I found the puzzle piece logo to be offensive. I said, “I’m a person, not a puzzle.” The representative told me, “I know, but our director insists upon it.” Once again, I had to cut off contact, and didn’t get the help I needed.

When I was getting help from a governmental organization for disabled people, they told me I had to take an IQ test because they were going to be giving me help going to college and wanted to see my job aptitude. Prior to this point, repeatedly the jobs they were suggesting for me were very basic skilled, the sorts you learn at vocational schools as opposed to college. When I asked how high the scale could go on the test they were giving me, they realized they didn’t have an IQ test that went into above average. I had to come back another day for a test that could measure me properly. Apparently disabled people aren’t expected to be intelligent.

At the autism support group I accompanied my family to, parents basically got together, talked about how horrible it was to have autistic children in my hearing and all the hearing of all the other autistic children and adults there. It led me to feel like I was a burden; I was told I was a lot of extra work and I wasn’t worth the work because I wasn’t a normal child. Not explicitly, but it’s basically what they were saying a lot. I left there hurt, having heard that I needed a cure, which made me feel like there was something wrong with me being who I am. The autism support group apparently wasn’t intended to support autistic people.

At the social skills group, we were all shoved into the same room regardless of age or skill level. We were made to repeat stupid scripts again and again. It was annoying. Because I’m not stupid, but they were treating me like I was stupid.

All of these experiences were very othering, too. Out of these experiences, the support group stands out as the worst offender, one which I was exposed to again and again and again. "Normal" kids' parents don't have support groups. The social skills group was the same; "normal" kids aren't expected to rehearse the same conversation over and over again. Normal kids aren't treated as though they're stupid. But these experiences are far too common for autistic children.

That’s it. Remember that we’re here and please presume competence, because if you don’t, I’ll presume you’re not a competent professional.

-Caley

Note: This post was dictated to me, Creigh, and I typed it all, since as previously mentioned Caley has trouble getting her thoughts out when writing. We also worked together on editing for grammar and flow, but the words are all Caley's.

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

Self-Advocacy is Only Half of It – On the Importance of Listening

I'm Not a Burden & Neither Are You

Presuming Competence: What Autism Professionals Need to Know

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