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Response to a Comment

9/4/2014

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So, there was a comment on a Diary of a Mom post (I swear, it's like that page is my second Facebook home) where someone asked for opinions on qualities that make for good special ed teachers. I read a lot of mentions on respecting what the parent says about the child...I read significantly fewer mentions of respecting what the child themselves communicates. Having read all that, here is what I wrote:

"I would like to add, speaking from personal experience as a family member only, respect for the kids themselves. Respect for parents is important in of itself, but that means little if you don't respect the child, too. If I made a list, presuming competence, respect (all around for everyone), and acceptance would make the top three. You'd be surprised how much that child is picking up - my sister is Autistic and has written some posts about the way people treated her when she was a child and even currently. [Note: This is the post I was thinking about when I wrote the comment:http://www.autismspectrumexplained.com/our-blog/presuming-competence-what-autism-professionals-need-to-know
] I swear, if those well-meaninged autism professionals and autism parents could have seen what was going on through her eyes, they would never have acted as they did...

And that, I think, is it. Empathy. It is incredibly ironic, I know, because consistently we're told that autistic people lack empathy...and yet the autistic people I know tend to have too MUCH empathy, not too little, and the people I am always begging for empathy and understanding from are consistently neurotypical. Empathy really is the key. Try to see the world through their eyes."

Caley read and approved this post and thoroughly agreed. She said that we should never forget to listen to the child in question, particularly when it comes to sensory issues (which seems to be an especially big empathy problem, as Caley and I have experienced: http://www.autismspectrumexplained.com/our-blog/a-tale-of-two-sensitivities). She said "Just because you can't feel how uncomfortable the clothing is trust what the child says. Just because you don't smell/hear something don't think the child is lying. Don't get mad at us for overreacting to sounds, etc to us it often isn't a an overreaction."

I guess you can distill those words done into some basic qualities that, from personal experience, Caley and I have grown to see as the most important. Accept. Listen. Respect. Presume Competence. And above all, have empathy. This list doesn't just apply to special education teachers working with autistic students, or even autism professionals working with students. These are the keys for everyone interacting with an autistic person, or any disabled person, or, even, for that matter, any human being. Now what we have to do is make sure that list is put into practice...

-Creigh
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What Goes Unsaid

6/3/2014

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So sometimes I read things from friends with children on the spectrum or have experiences with the children I care for that, for privacy's sake, I don't post here. But, had I written about those experiences, here are the points I would have driven home.

1. Autistic people have empathy. If I ever had any doubt, multiple touching and caring events of compassion I've seen from an autistic child would have wiped it from my mind.
2. We really, REALLY need to create a world that accepts autistic people. They are suffering from the way society views them, and we must make it our goal to change that.
3. The Jenny McCarthy "try everything" approach? Yeah, I've seen it at work, and the road it can lead down I'd liken as akin to child abuse.*

If you'd seen what I've seen, or even heard me tell you of my experiences, you'd know these already. But as it is, you'll just have to take my word for it.

-Creigh

*If you are someone who thinks of themselves as trying everything and is offended by my comparison to child abuse...I'm probably not talking to you. The problem with trying everything is that if taken literally, the road it leads to is one where people end up trying things that can cause physical harm to their children (eg the parents who swear by the Judge Rottenberg Center, for a more extreme example). And that is when efforts to help can turn into abuse. No matter how well intended it is, I think we'd all agree that's unacceptable.
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A Tale of Two Sensitivities

5/14/2014

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I've noticed that people are a whole lot more accommodating of my sensory needs when I have a migraine than they are when Caley is on the verge of a sensory overload. I get very light and to a lesser extent sound sensitive when I have a migraine - in fact, my quickest remedy for one is a dark room.

As my migraines have grown worse, I've gotten better at advocating for myself. Now, if I'm around family, I think little of asking them to turn off a light that's shining right in my eyes. In fact, some meals have been merely candle lit, in deference to my issues. At work today I wore sunglasses indoors, as I have many times before, and was met with understanding and sympathy when I explained the reason. And the roommate I shared a dormitory with got used to having the lights off all the time.

Yet I find myself wondering, what if that was Caley? She gets very light sensitive, too, and is even more sound sensitive than I am, due to her sensory dysfunction (which goes hand and hand with autism). Would people be as accommodating with her needs as with mine?

Unfortunately, I don't really have to wonder; I know from experience that people are far from accommodating for Caley's sensory needs. Instead, consistently the attitude she is met with is of the "suck it up and deal with it" and/or "stop complaining" variety. No accommodations are made; in fact, in many instances upon being told of her struggles the sensory demands on her will be increased, not lessened.

What is so different between the pain and discomfort I deal with during my migraines and the pain and discomfort Caley faces when she's nearing sensory overload, to make it so that one is greeted with kindness and comfort, and the other with disdain? I originally thought it was that one was seen as being more of a medical issue, whereas the other is perceived as being pyschological and therefore 'all in one's head'.

But I think Caley's explanation better describes the core problem. A lack of empathy, she says, is the reason for the difference between how the two of us are treated. Everyone's had a headache, and most people have even had at least one migraine. As a result, they can empathize with my painful dilemma. They wince at memories of our shared pain and accommodate me where they can.

But sensory overload? There are few enough people who know what that entails from an academic standpoint, but very few of us have experienced it. And because of that we write Caley's pain and that of other Autistics off as being something they can just 'suck it up and deal with'. Because we cannot fathom what it feels like to be in her shoes, we simply brush her feelings off.

Is that not ironic? We're told repeatedly that autistic people lack empathy (which is, by the way, not true and perhaps even the exact opposite)...and yet, repeatedly, it has turned out to be the neurotypical majority that lacks it, and Autistics who are left to suffer as a result.

My point here is be accommodating of an autistic person when they ask for help. Even if we don't know what it feels like, it doesn't make their feelings any less valid. And, for the closest thing neurotypicals can get to empathy for sensory overload, watch the videos and read the discussion thread I linked to below. You still won't get what it feels like...but you may start to realize how little you understood.

Videos:
http://www.youtube.com/watch?v=IcS2VUoe12M
http://vimeo.com/52193530

Explanations of what it feels like for different people:
http://www.wrongplanet.net/postt249130.html

-Creigh
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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.

    Top Posts

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    Difficulty with Changes 
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    Transition Time!
    My Autism Speaks Story
    A Tale of Two Sensitivities
    Autism and Haircuts
    Cause of Autism
    Vaccines and Autism
    Happiness's Variations
    I Cannot Call Caley Cute
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    Her Autism is Worse
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    Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook. 

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Disclaimer: The author of this website is a  speech therapist, NOT a psychologist, and frequently writes based on personal experience. As a result, advice given here may not be completely accurate and may not apply to everyone. The author readily admits to having a lot left to learn. In addition, most of this website was written before the author became a speech therapist and is thus not written from a professional perspective. This website should not be used in place of a professional. The author is not responsible for the content of other websites for which links have been provided, nor content from other contributors.
Published: 3/09/2013
Last Updated: 11/14/2017
Photos used under Creative Commons from madmiked, Jim Larrison, Purple Sherbet Photography