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Haters to the left | Heroes to the right

Are you serious! How dare you! You can't just go up and walk into his head like that. How do you know it won't have an adverse effect? He isn't like Jet who's was brainwashed. Tikaani's mind something completely different. Who knows what will happen if you even try? Have you even fathomed to ask for his permission or are you just going to up to him and go 'o hai surprise brain rape?' cause I would like to know what kind of ethics y'all are fucking over sideways.”
-Toph from Cui Bono 

This is a selection from scene in Cui Bono in which Tikaani has regresses which worry the canon characters, Aang suggests to Katara about using water-healing on Tikaani's mind to see what is bothering him and use it as a form of therapy. Toph the blind earthbender, who empathizes with Tikaani disagrees and thinks what their doing is "wrong" 

Which brings up a good question. What are the ethics in treating autistic children and how should we go about it? Many parents do not object to ABA, Speech and Physical therapy as ways to treat their son or daughter. But at one point is it ethical to ask for consent? I think many parents always have the excuse "I know what's best for Lily or Joey" but never realize that as an 'Observer' they are looking though a pair of lenses that doesn't see all the colors, so while they may have best intentions they are often one-sided. 

So I am sure people are now thinking 'So if I wash off all the layers, is the bottom line that Bard Child is against treatment?' the answer is 'no', I am not against treatment of malign behaviors. I am against is this rational that hiding your child your daughter in the medical dark is ethical. Now I understand that there are a lot of exceptions and . People would say 'my child is non-verbal, I am doing this treatment so s/he can become verbal.' Ok then I can understand that rational very well, but would it be better to find a language that your child can use that isn't verbal-based? Perhaps something that s/he he can use easily and communicate clearly with? Perhaps the first step is not "fix the child" but rather "start communication". Once he s/he has communication method that is him/her is comfortable using and can be understood (pictures, sign, type), the next step is the one many parents ignore. Listen to what they have to say. Ask them their thoughts on their perspective:
  • Do you feel that you are different/disabled?
  • Do you feel left out a lot in school and home?
  • What do you feel that is bothering you the most?
  • What can we do to make you feel better? 
  • What are you're goals? 
  • How can we reach them together?
Understand their perspective will help figure out what treatments would be effective and what treatments they want. It will also help clarify some things that you might not be aware of. Such as the recognition that s/he is disabled. Some kids are aware at a young age they are disabled or feel that they are not like their peers. They might not have all the communication skills to properly state it. Now I know people are like 'well you don't need consent we're their parents/guardians.' Legally, yes you don't need their permission. But including them in the concept of treatment and what their thoughts on it is what I am trying to communicate here.

Now you shouldn't include them in very single detail but telling them the side-effects of their Ritalin is better that listening to them complain about how anxious they feel and wonder if they know it's just side-effect. Now I don't believe two year old should worry about the side-effects of their medication(if they are on meds), but eight-year old on 50mgs of Adderal should know the effects it has on him not the just good but the bad too. That way he could reason that the anxiousness and slight light-headedness is just minor effect and nothing to be totally worried about, but sever dizziness is something that he should tell ma and pa about. How you should approuch treatment to you child should be age appropriate. Asking them how they feel after each therapy session and getting feedback from them is teaching them an important skill in relay and to tell mom and dad if something isn't working. Once their older like around 10-13 then actually asking them if "Do what do you think about putting you on new meds, do you want to continue meds? What do want to explore other treatments?" Eventually there will be point in which they want to refuse treatment all together if nothing is effective anymore. 

I guess when it comes down it's less "asking permission' but including them in discussion. Education on what treatments they are reciving is probably the best skill that you can teach them. They can't rely on doctors all the time, they should build the skills needed to learn what medications/therapies effect them and how effective are they. 

I was never given this oppertunity. I didn't know what I was on until I was around 8-9 or what it was for until age 13. My parents thought that I didn't need to know. It's no fun feeling angry, upset and or hungry all the time without any reason why. I wasn't included in the discussion until I was 15 and even then I was often ignored. The bottom line, I learn to hate drug treatment because I wasn't taken seriously when at age 12 I said "I hate taking pills". Depakote put me in the hospital because I was overmedicated (oddly enough it was also that allowed me to be diagnosed) Psycho-stims made me an aggressive monster prone to violent rages. No body fucking listened. The only treatment that I felt was working was behavioral therapy and horseback riding I still the former but I cannot do the latter. My mother only invested in drug treatment because she so hoped that work and swore she saw improvement. Until the day I keel over, I believe my mother only saw what she wanted to see. And never saw what I saw. 

In all, treating your child is all well in good, but what good is keeping them ignorant? Is it the old ideal of kids being innocent and young and it's better to not worry their pretty little head? Or the fact kids are too dumb to understand? While this applies to any child on psychatric medication or treatment, the problem for us autists is that some kids neurotypical kids eventually get the luxury of being treated like member of the commitee and asked about how they feel and what their thoughts are. For us? Probably never. If you get the diagnosis early enough, they are going to do all in their power treat you and once you get the verbal skills to communicate your feelings on the matter, they mostly will disregard it or assume because we more communicative the treatment is working. In all I feel many autists get the short end of the stick when it comes to being a part of the treatment discussion. I feel many of their opinions are simply waved aside because of stigma which is the most frustrating thing in the world. Not just autists feel this way, I know my friend J who is Schizofrienic and Bi Polar with smatterings of PTSD, feels like his opinions are being ignored because of the stigma of 'crazy'. 

The biggest issues is the point in which the autist is now and adult and parents and caregivers are still administrating treatment. At that point no longer including them in the discussion. It's now asking permission. And if the autist is non-verbal, it brings the biggest clusterfuck of issues than you can shake a stick at, ethics are often throw out the window and into deep space. 

So to wrap it up, while I did start about asking consent, I think what I was trying to communicate, is letting your child participate in him/her's treatment and let him/her communicate him/her thoughts/fears and opinions without the fear of them being patronized or being ignored because of disability stigma or age. 

The crux of it all is not treatment, but the concept that NTs always know what's best for autists and therefore can administer treatment to said autist without telling them a damn thing, or bullshit them as much possible. They will pull every excuse out of  the book and rationalize like crazy. But in all, not educating them giving them all facts on what is administered to me is the highest example of systemized ableism. 

Bio-med parents are the biggest perpatrators of this, they are more or enforcers of ableistic concepts of what is considered 'of value' and will continue to...well to quote Toph 'fuck ethics sideways'. Nothing that they do is based on the perspective of the autist. Just on what they feel is right. The autist's opinions are often discarded to make room for the privilaged NT's. They do not listen to autists of many colors because they cannot be wrong. They will do everything to justify their ethic-breaking, everything from demonizing ND, distorting facts, and martyrizing. They react with fear, not wisdom and knowledge, they are terrified and doubt what they are doing is even working or right. I pity the bio-med so damn much. They miss the point, the whole objective, they act like they are the man-gods of medical community and that we are just dumb plebians not knowing what good for us. 

That's right bio-med, feed the hate, feed the fear; drown in your own guilt and false-enlightenment. We'll still be here, next time try talking to us once you finished spiraling into the descent of disillusionment.

still bitter as hell
Bard. 

PS: Bard Child needs to not write while listening to grunge metal and drinking irish coffee....makes the aspie-wolf fang-y and bitter. ):< 

Comments

( 6 shouts — It's a Stimmy Day... )
neko_no_baka
Aug. 9th, 2009 02:02 am (UTC)
I very much agree.

Here's another point for you. Getting the kids involved also helps them become self-advocates. Once we/they get to be adults, they/we are expected to ask what we need and be able to explain why we need it. I had to learn very quickly in university, since I was used to my parents advocating on my behalf.

Being able to self-advocate is what independent adults do, so it's actually a good thing to be teaching.

~Corina
kwombles
Aug. 9th, 2009 02:40 am (UTC)
So important for parents of newly diagnosed (and not-so-newly diagnosed) children to read!
You raise an interesting point of voew that I can't help but think those parents who are so busily pursuing every quack and crack pot theory to "recover" their children have never even considered.

Would you be interested in posting this to Raising Autism or the Countering Facebook group or at least posting a link to this specific entry?

I'm going to write a little blurb on my Countering blog and link back to this entry. :-)
teacup_werewolf
Aug. 9th, 2009 02:43 am (UTC)
Re: So important for parents of newly diagnosed (and not-so-newly diagnosed) children to read!
Oh sure! I'll post this on Raising autism for other mothers to read.

Tikaani: *grins* :)
kwombles
Aug. 9th, 2009 03:01 am (UTC)
Re: So important for parents of newly diagnosed (and not-so-newly diagnosed) children to read!
neko_no_baka
Aug. 22nd, 2009 05:40 pm (UTC)
permission?
I was wondering whether I could have permission to quote, well, a big chunk of this in my next article about self-advocacy in the disability community (so well written). I promise I'll be linking back.

~Corina
teacup_werewolf
Aug. 22nd, 2009 06:36 pm (UTC)
Re: permission?
feel free
( 6 shouts — It's a Stimmy Day... )