Why should my son have to take a pill to alter who he is? Maybe the magic pill could cure ignorance, scrutiny, condemnation, and heartlessness. Althought autism isn't pretty, it is who he is. There is a part of me that wishes my child was developmentally on target and could communicate better, don't get me wrong. But if autism is a part of who he is then I am not so sure I want to change the person that he is...because he is quite special.
If I gave my son a "magic pill" that cured autism I might not get the chance to see him dance to the beat of the washing machine. Where others hear water and agitation, my son hears a melody and sways to the swish and hum of the machine. If my son were to take the "magic pill" I am afraid he would lose that angel face...the face that is so pure and innocent when he is staring out the window of our french door. That magic pill could take away that sweet voice that refers to himself as "Spongebob".
Is life difficult? Yes. Is life a challenge? Yes. Do I ask God why did he choose my son and my family for autism? Yes...quite a bit. But would I change him? I couldn't be sure I would be any happier with the outcome of a "normal" child. Does he deserve to live a life of normalcy? Of course. But he also deserves to live in a world where he can be himself and no one turns to stare.
There is definitely something beautiful about autism. Thanks for the reminder.
ReplyDeleteI think there is a balance, you know. What bothers me about the hardcore neurodiversity paradigm is that in NO other condition is seen as "all or nothing" like ASD is, and ASD probably has more variability than most conditions, anyway. Nobody says "let's accept bipolar/adhd/schizophrenia instead of treating it because those who have it can be spontaneous, creative, and interesting" if you get what I mean. Treating ASD and accepting ASD does not have to be mutually exclusive.
ReplyDeleteI don't mean to offend those on the spectrum who argue (correctly, I might add) that ASD is different because it is a COMPLETELY DIFFERENT WAY of thinking and perceiving things and that often times treating the problems means diminishing some awesome, interesting strengths. I just think enough individuals on the spectrum have serious lifelong problems to justify such treatment. This does not mean I can't/don't love my little weirdo (term of endearment, not derogatory!) for all that he is.
I am not talking about treatments. My oldest child takes medications for his hyperactivity and for some autistic behaviors, but I am talking about a "cure all" pill. I believe in treatments that better my child's quality of life. I just don't know that I want to give my child a "magic pill" that changes everything about him to the point that he isn't who he once was. I am an advocate for certain medication therapies (when appropriately called for) and for intervention and treatments. I wanted to clarify so there is no misunderstanding. At the end of the day, my son who takes treatment medication is still himself and he still has autism...he is just a better version of himself.
ReplyDeleteI see. I guess basically I see treatment as its own spectrum with cure being on one end, and complete accommodation being on the other. Acceptance isn't on that spectrum- I accept my child for who he is on any level, but with a brain disorder, there is the essential problem that any treatment for negative symptoms may alter things like personality. Who people are can be pretty tightly tied to their thought process and perception, and you cannot successfully treat ASD without altering thought process or perception. Intense early intervention is thought to be so effective because it actually alters the brain patterns because of neuroplasticity, so we've already made a decision to alter our children's brains. I see you’re talking about a hypothetical magic pill, but I think we are already making daily decisions about the balance between preserving what makes our children unique and endearing and fighting the debilitating problems associated with their disorder.
ReplyDeleteThat is an interesting way of putting it...a spectrum. It is so true really. I really was speaking hypothetically about a "magic pill", but as far as treatments and therapies and intervention goes I am pretty picky. My son is on meds for hyperactivity...but the school mentioned heavy anxiety medications to keep him calm...ummm...no. He doesn't need all that and I don't want my son comatose. It is hard knowing what treatments are right for our kids and we don't want to alter who they are. I guess I was thinking more along the lines of a pill that would come along and just snap...he is completely different and I am not so sure I want that at all. And, as always, I respect you opinions. That is how we learn from each other.
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