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Quickie: Autism and pain

September 20, 2011

I will try to turn out another post when I am less enraged. (And, indeed, after I’ve iced the injury into submission enough to go out and get some better-than-nothing pain meds. Because I have no reasonable expectation of having this taken seriously if I should go and see about it–and they couldn’t do anything I can’t for it in this case, anyway.)

This stuff, it hurts people beyond the immediate physical pain. Which should be damned obvious.

But, in the meantime, here is a quickie I posted a little while ago on Tumblr:

Expression of pain in children with autism. [Clin J Pain. 2004 Mar-Apr] – PubMed – NCBI

One I ran across, which really chapped my hide. Especially with a history of pain not being taken seriously, even undiagnosed as a kid–and being in pretty bad pain ATM largely because of this, and having learned to gaslight myself. (Probably more on this later, because it is a truly absurd situation involving an actual fracture.)

Bolding added.

There was a lack of concordance between parental reports of pain and observed pain responses for the children with autism. Behavioral responses of the children with autism were generally similar to the comparison group, except the substantial facial pain reactivity instigated by the venepuncture in the children with autism exceeded that displayed by the nonimpaired comparison children

The findings demonstrate that children with autism display a significant behavioral reaction in response to a painful stimulus, and these findings are in sharp contrast to the prevailing beliefs of pain insensitivity described in the literature to date. The findings also raise questions about the appropriateness of parental global report as an assessment tool for pain in children with autism.

No shit. When you are honestly willing to believe that another being is insensible to pain, nobody should listen to you on much of anything. Or that you necessarily know what it will inevitably look like when someone is in pain–though this study kind of points out that it might matter more what they’re expecting to see.

(And, yeah, that makes me a member of two groups that this is still a common fucking misconception about.)

_________

I’m not usually too big on the old “they deserve to be shot” approach, but yeah. People who want to think that their own kids just don’t feel pain–and, indeed, that they cannot communicate when they are clearly communicating pain to not-so-biased observers–are managing to get some serious evil going.

Going back to Julia’s Dear Autism Parents:

(In no other minority community is this level of power-play tolerated. You are not our voices, we are not the same, we do not want the same things, and if you aren’t disabled? Then by definition you are not a member of the disability community.)

You know you’re looking at a group that has been dehumanized, when it is often considered totally proper for people with should-be-clear conflicts of interest to be taken more seriously than the group members themselves. Including about things like whether they are in physical pain. (Which, if this is even a serious question when anybody else would be… *headdesk*) That is abusive behavior all around. By the parents themselves, and the health care professionals who listen to them because they have also bought into the same load of dehumanizing shit.

One Comment leave one →
  1. girljanitor permalink
    October 9, 2011 8:12 pm

    I was told so often as a child that the pain I experienced upon hair brushing, loud noises, and rough clothing wasn’t “real” so often that I was abused by a teacher for 8 months or so and never told anyone, since they made it clear they were tired of hearing about my pain. I didn’t really have an understanding of the difference between pain inflicted for “your own good”, pain inflicted accidentally, and pain purposely inflicted.
    As an autistic adult, my pain and/or startle response looks like an absence seizure. My system is flooded with adrenaline and cortisol from my overstimulated amygdala, and the entrained reaction is to expend who knows how many calories locking down any facial expression, sound, or movement that would “give me away”. I’ve tried to reverse this, but so far to no avail. I have a variety of stress-related physical ailments.
    I’ve been told so often by people in authority and especially medical professionals that my pain isn’t real that I have cried from relief when told I actually DO have a medical problem.

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