Monday, August 6, 2012

Tweets too short for this discussion...

I guess "enough" depends on the type of treatment... but in my experience, people (even loving, caring, parents who "researched") don't understand what they're "curing."  Is the treatment temporary (stop doing/taking X and the effect stops) or invasive/permanent (I don't have a good example... are you going to operate on my brain?)?

Some 'behaviors' that are 'cured' aren't really cured, they just give the person with ASD more stuff to have to deal with.... in a world that can already be overwhelming.  Instead of letting us cope and finding ways to effectively let us manage symptoms/input/etc. from what I've seen people want us to be more "normal" (and I'm not alone in that opinion).

Did somebody understand the actual problem they were trying to fix??  Or is it going to be another instance where they taught someone with ASD to maintain eye contact - regardless of whether they could effectively communicate while making eye contact?  If all you want is "normal" then, I'm sorry, but you need to get off my planet.  I cannot always look you in the eye and make cohesive conversation - there's too much to process.  All you did was make an NT feel better.

And yes, we do get a little defensive when you want to "cure" us... How about we cure you.  One day if there are more ASD's than NT's, want us to try and find ways to change how you interact with the world in ways which might keep you from being able to interact?  This is what I mean about more information.  The treatments I've seen where they "fix" a behavior, they didn't address the reason why the behavior occurred, only took it away and replaced it with nothing else.

Did somebody consult ASD's regarding the therapy (in regards to behavior therapy, possibly medication) to understand why the behavior existed and, if modified, what would need to replace the behavior or make the behavior less distracting?  Are the people who developed the therapy and who are praising the potential outcome all NT's?

Twitter conversation below the jump.

(and I included the "medical acceptability" part at the bottom even though I want to talk more about that too... I just can't right now.)  Or maybe I can a little... Medication reacts very strangely with ASD's... I already didn't think they did proper testing on drugs (samples never include alternate groups such as elderly, overweight, groups with other medical conditions) and so 'wackadoo' stuff ends up happening to people in those groups.  Even drugs that are "tested" and "safe" end up with recalls, killing people, or causing huge problems later...



If a cure for autism was on the table, no one would FORCE parents to use it - or adults w ASD. Stay exactly as U R - but don't deny others.

I understand the argument... but parents could force their child. Unknown side effects + if brain's wired difly, how 2fix that?
 
I don't understand people trying to "cure" I guess I see it more as trying to fix something that isn't broken.

granted, my experience is a little outdated so new therapies may exist... but from what I saw many targeted symptoms w/o regard to cause 
 
 
If cure is a dirty word in autism call it anything else but why shouldn't those who struggle have access to an easier, safer life?

by who's definition? NT's ? 

when do we get to decide what is easier and safer for others? My son and I struggle some but who doesn't? Don't mean were broke
 
I guess if the adult wanted to try it... I just don't agree with allowing parents to have it done to their kids w/o more info. 

How about parents who opt 4 long term chemo w terrible side effects- risk reward careful though prayer I suppose. 

you show me a kid who's is about to kill them, then you can make that argument. 

Parents force their kids to do things every day - take meds, go to school kids w ASD are forced the most don't U think? 

Yea, I was forced to take meds (Ritalin) but when I was 14, I asked and was allowed the choice to stop taking the meds. 

how much info is "enough" and why assume a parent hasn't gathered or didn't gather info?  

Fair. But must admit not all research. +NT's don't have it. Had to explain 2fr's rents why he became nonverbal when they forced him to make eye contact. They cared, researched, but never lived it. I admit - haven't chkd new tx.


We had a post from a woman w asd about the horror of risperdal. It's a matter of medical "acceptability." 

You do realize that medication can affect us in ridiculous and strange ways... right? I don't agree with medical acceptability.

1 comment:

  1. Due to the nature of the source of this conversation... I wrote this entry rather quickly so it may not be as polished/concise as I usually prefer.

    ReplyDelete

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