I have read posts on here similar to this one. I have also recently witnessed attacks on Twitter, both against those for neurodiversity and against those for cure. By both sides.
One tweet I read said "If u hate autism then u hate ur son." *sigh*
Do I hate my son if I hate it when he spits at me?
Do I hate my son if I hate it when he hits me?
Do I hate my son if I hate it when he punches holes in the wall?
Do I hate my son if he spills milk and cries and screams for TWO HOURS because he spilled milk because I hate the feeling it produces in my head when he does so?
Do I hate my son because I hate it when he refuses to wear a perfectly good pair of sneakers that I just bought?
Do I hate my son because I hate having to cook the same meal, again and again?
Do I hate my son because I hate the fact that he doesn't have *any* friends?
No. The answer to all of these are NO. I can, however, hate the cause of all these things, which is autism.
However, I know there are those and I mostly agree with, that will say autism is a part of him. Therefore if you hate autism you hate him. Autism is not necessarily a part of us. It is the reason we are the way we are. Would I hate a person who has exhibited poor behavior? No. I'd hate the bad behavior.
But then again, I don't usually *hate* anything. I may strongly dislike, however, something that someone does, but I do NOT hate the person. That is a misconception that is perpetuated. IT NEEDS TO STOP.
I am not saying I'm going to cure my son when/if a cure is ever found. However, if a person hates the thing that causes bad things to happen to good people, that is NOT the same as saying they hate their kids. Argue the point about cure versus neurodiversity on FACTS. Not emotions.
I know it may be difficult for NT people to separate their emotions, especially when it involves kids, but it should be done. It's stress that is unnecessary for both sides. Please.
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Comments (9)
Personally, I view it like this - if my child had cancer, I would hate the cancer. Doesn't mean I would hate my child.
I couldn't agree with you more. Fighting in the community gets you nowhere and accomplishes nothing for our children. Its just a matter of where the sparse research dollars are going to go and what kinds of supports need to be created for the future.
I can say I hate autism. I do not hate my children. I hate how autism makes things so difficult for them. Things that should be natural and easy. It is because I love them that I hate autism. They on the other hand, like just who they are. We don't talk about it, because they are who they are and I am glad they can accept themselves as whole people. Now lets get the rest of the world to accept them and we have accomplished another great task :)
@aspergers2mom - @Morningstarrising@xanga - Thank you for sharing your views!
Elise, as always so pragmatic, I love it!
I think there is a middle ground here, too. Some argue with me because they believe they *are* their autism... but putting that aside...
I love who I am. I need accommodations to function. So accept me as I am and provide the supports I need while I work on strengthening my weaknesses so that maybe someday I won't need those accommodations anymore.
I believe finding a cause or causes is essential to finding adequate therapy models (if you know why something "broken", you can find the "fix easier). But other than that, I try not to argue.
We're all in the same boat named "autism." We all have to work together to row it ashore and we can do that if there is not all this emotional-based in-fighting. (How's that for a metaphor?? I'm working on those ;) )
But if we're all busy gesturing and pontificating, we don't have free hands to grab the oar and help ourselves and each other and that boat will continue to sink. :)
I can't hate or love my autism even though sometimes I do one or the other. The thing is, while my autism gives me definite weaknesses that I really hate, it also gives me definite strengths that I really love. So I have a love/hate relationship with my autism, wishing to get rid of the painful, difficult, isolating parts of it but afraid to lose the special, joyful, meaningful parts of it. If my autism were taken away, my concept is that I would feel great relief for the things that were taken from me and also great emptiness for the other things that were taken from me and I can't imagine what would be left. It seems like it would be something mediocre, bland, and pointless.
I think maybe an analogy here is what I have heard friends with bipolar illness say. They would love to lose the depression and even aspects of the mania but fear that taking the bipolar away altogether would take away their flame of creativity and their passion for life. In fact, I've heard many complain that that's exactly what their medications do: take away the bad things about being bipolar . . . and the good things about it and leave them as a bland cipher walking through the motions of life without caring about it anymore. That describes exactly how I feel life would be for me if my autism were completely taken away from me.
So I think some of the people who get really offensive in their "anti-curebie" stance are probably acting out of a great fear. The idea of curing autism is terrifying to them because who wants to be a blank? I don't know how to deal with them (extreme anti-cure people bother me, too) but my life research and experience thus far tells me the "water that puts out the fire" of fear is love. So maybe the key to solving the Cure/ND schism requires some form and expression of love. On both sides. And that's not an easy thing to accomplish.
@sparrowrose - AMEN. Love conquers a lot of crap. Personally... I'd like to not hear the high pitched noises that other people can't hear... but oddly, at the same time, my ability to percieve frequencies that others can't changes how I enjoy music. I can't imagine it improving with a loss of those highs and lows that I pick up outside the "normal" range. I'd rather have someone use sign along with speech to communicate with me so that their meaning is completely clear, even when their words may not be. I LOVE to read. Reading is way better than either... but both together is good.
I can't imagine not being able to "see" behind me. Change my perception of time and space and my whole world would be out of whack. Sure, it might make me a bit clumsy and uncoordinated, and words come out in no particular order sometimes or with the wrong tense or pronouns... Sure, I have a really tough time with executive function... with time being virtually meaningless to me... priorities sometimes don't make sense. I have to work them backward, picking apart the chain of events from the desired end result and then attempting to reverse themto move forward. But... I'm learning how to deal with myself. I don't expect anyone else to deal with me. Grace is nice when it's given... but I don't expect it.
Wow...the Autist make a good case for their autism.
But me, I can hate the autism.
As a parent (grandparent) (great grandparent)...I can hate the fact that Autism gets in the way when we go out to dinner or shopping, or by the fact we can never, as a family, go to the theatre, or a ball game, or the circus, or Disney on Ice, or even to a church because all the sights and sound overwhelm our little Sky.
So I agree - I hate the autism that changes our lives so drastically. The autism that makes us outcasts where ever we go, the autism the makes even our family say, "You CAN control that child. It is all your fault he acts the way he does."
I hate that autism. I love my child.
Thank you all for sharing your views and voices. I know it's an emotional subject for some and I appreciate the niceness with which you all participated in that discussion :)
The thing that bothers me the most about this debate is how personal and mean it can get. I've been involved in the debate on twitter and the other tweeter got down right nasty, mean and completely unreasonable. My problem is when my parenting and love for my son are questioned. That's not fair and not right. I try really hard to approach life with an open mind and heart. I really like to hear people's takes on autism, be they "curbies" or "NDs" But there are some who won't listen to my experiences. If you don't want to treat autism, that's your decision and I respect that. But respect the fact that as a parent I want to give my son all the opportunities I can, and for me that means treating aspects of autism as a disease and treating those symptoms.
Like other's I don't hate my son, I do at times hate the autism for many reasons people have listed. As a parent it is beyond difficult to see your child struggle. I don't care about my struggles, I can deal, but seeing my son struggle with communication, socialization, sensory issues, that's heartbreaking, so I do what I can to help him with diet, supplements and therapy. If that means I'm a "curbie" so be it.
@Andrea - Very good thoughts. I think it's well-put, too :)
I don't think anyone should question a parents love. unless they are abusing their children.