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

7/17/2014

2 Comments

 
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.]
2 Comments
Aditya Singh
7/17/2014 05:29:14 pm

Caley

Its amazing how you fight these social stigmas every day. I am not autistic but I have been a victim of social stigmas quite a few times, so I sympathize with you (the Indian society is filled with such stigmas that it gets hard to breathe at times). Also, I respect the fact that you're trying to make people aware of all the problems that people suffering from autism face.
Currently, I am working with a Think Tank called ASPEN. I was asked to write an article on World Autism Awareness Day, which by the way seemed like a great opportunity to give voice to my own problems.
However, when I sat down to write the article, all I could do was draw a blank face. Frankly, I do not understand how you found the courage to speak out.
Now, while I am not afraid of giving voice to my feelings, I just do not know how to start.
That's when I read some of the posts in this blog and it got me thinking. Could you help me write an article? I have never worked with autistic people before but i have worked with children (5-12 years old) that suffer from various other diseases. So, getting an idea of the problem from someone who has faced it first hand would be great.
Please let me know if we can someday communicate over this.
Also, please let me know if there are NGOs that actually help people suffering from autism and do not work just for the heck of it. I would love to work with them someday.

Best Regards,
Aditya

Reply
Jackie
7/30/2014 09:36:20 pm

I now visit a dentist who gives me laughing gas every visit, because of the dental trauma I experienced. You should see if there's a dentist that offers this where you live. I had a dentist keep drilling a cavity despite me screaming in pain, he was supposedly good with people with mental disabilities. Apparently that meant he would ignore patients having "meltdowns" and go ahead with what he was doing. It was just like those dentist themed horror films. My mom reported him to 1-800-Dentist so he'd be taken off their service.

I think sometimes you're better off not telling doctors or dentists you have a form of Autism. Either they go into talking to a baby mode, and get angry if you correct them or advocate your needs. I find many people in such businesses feel the need to enforce their authority, and will treat patients who need extra help like naughty children.

Like the podiatrist who pushed me into having a meltdown over wanting my foot numbed before getting an ingrown toenail removed, then acting like I was a repulsive woman-child for giggling because the anesthetic tickled. It's like they think it's an insult to their skill that someone needs extra help. Which of course brings the question, if you didn't want to help people, why the heck are you in a business that requires you do so?

I've left more appointments than I can count upset to the point of tears because so called professionals think they'll teach me a lesson for not respecting their authority. All I learn is fear, and to not trust anyone who ignores my needs. I don't know how "I'm in pain!" can be so difficult for people to understand.

Those of us with Autism spend a lifetime having our experiences of pain ignored. We're told we're lying about our sensory issues, that it's not that bad. After awhile many of us become skilled at dissociation. This only has made me certain of one thing, Autistic people spend a good portion of their lives having the pain they experience denied, and as a result become skilled at dissociating. Since when we're abused, forced to endure loud sounds without covering our ears as one example, it's ignored. We grow up learning to endure pain, and expecting no one to acknowledge it.

I find it very telling that the only validation I got for my fears were from horror films. The problem is not that we have Autism, it's that people without Autism refuse to respect our sensory sensitivities.

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    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

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