Saturday, July 5, 2008

A question for you readers (all what, 2 of you?)

I was recently looking around the forums at Foggyrock.com and the Autism acceptance website. I'm new to the online Autism community, and thus have not posted for fear of getting flamed for posting an unpopular opinion, particularly my disdain of things like allergies causing Autism, therapeutic foot baths, vitamin miracle cures.. Etc. on one of those forums, can't remember which one, I found a post asking an interesting question.

If a magic pill were made available to the public, that cures Autism entirely, would you give it to your child? Every single person on that thread posted that yes, they would. I did not post,for the reason mentioned above.

My answer? No. I wouldn't. Jaymes was born with Autism. It is part of him, part of who he is. It does not define him, but it's an undeniable aspect of his being. For whatever reason, God or whatever deity you believe in, saw fit to make Jaymes the way he is. He doesn't need "fixing." He is not broken. He is an individual, with his own set of quirks, needs, wants, talents, vices, and interests. Who am I to say "here's a pill to make you normal so we can all have an easier life." Nope.

I'm all for therapy, for treatments to help Jaymes function and aquire new skills. I want to work with who he is, to make his (and our own) quality of life better each day. But there's the difference- therapy works with what you have, with who your child is. This miracle cure would change Jaymes entirely as a person. How would that effect Jaymes, both the shock of suddenly being "normal" and the eventual understanding that mommy and daddy felt the need to make you more "normal" and loveable using a pill?

Sorry, I know it's not the popular opinion, but I love Jaymes for who he is, Autism and all.

9 comments:

fadetopurple said...

Hmm... I can see both sides of that argument. You want to accept your children for who they are, but you also want what's best for them.

It would be interesting to ask someone who is high-functioning autistic or Aspergers if they would take a magic cure pill.

Amber said...

Gotta get Findlay's boyfriend (or was it husband?) to answer that one, I guess.

FindlayDropout said...

I will ask him and get back to you. He is reading your blog... Maybe he will see the comments. It's boyfriend by the way :)

Amber said...

Blame the memory loss! On the plus side, least I remembered he's male!

John said...

(This is Findlay Dropout's boyfriend)

In one part of your post you say that it seems like a common opinion that giving this magical pill is generally preferred. I know I personally, while sometimes I think I want to be like other people. I want to be satisfied by the same things that they are. I know I couldn't be. I wouldn't ever take this magic pill. Actually, I was even subscribed a semi magic pill (Risperdal)when I was younger. I refused to take it after about a month because it made me think differently. It made me slow. The way I worked... no longer worked. I DON'T work like other people. The pill made me into a non person. Or so it felt. I tried to do things I used to do, and couldn't, like instant math calculations and seeing music as color. I wasn't happy like that. Although sometimes I felt more "normal"

I am a member of a few forums that are for people with HFA/Aspergers. And this very question was asked. I think it's somewhat interesting that on a site that caters to family members the common opinion is that they would give such a pill, but on the sites I am a member of... it's a common opinion that they wouldn't ever take a magic cure all pill. People might THINK that would be the best thing for children, to normalize them. But I don't think it truly is, and personally I would feel like I died and became somebody else, I would much rather actually die, and become somebody else than to change who I am halfway (or hopefully a quarter of the way ;P) through my life. I can't really say what I would do if somebody fed me that pill when I was a kid because well... I'd be different and have different opinions. Hope that's sort of a sufficient answer.

Amber said...

Thank you so much for that answer! You actually gave me food for thought too. Jaymes has been on Risperdal for 2 years now... I wonder if it makes him feel like it did you- if he feels wrong, if he's not him on it. We use it because it helps keep him calm, and focuses him, but I'll admit rather grudgingly that a large part of why he takes it is that it makes my life easier- makes him easier to handle. Not so wild, not so loud. Maybe I'm wrong in this.

Thank you.

John said...

Don't be so quick to think you were wrong, and don't think it's selfish for him to be medicated even if it is solely for your sanity. Pills, and medication aside. You are the most important thing in Jaymes life. That's not going to change. If it makes your life easier, that's a good thing. For you, for Jaymes, for the rest of the household. He learns from you primarily, even if it sometimes seems like he doesn't. So before deciding to take him off, please consider that him off pills and you insane, is worse than him on pills and not thinking 100% like himself.

Oh and always try reductions before taking somebody off completely.

Aside from this whole deal. Do you do things like physical therapy? Something that helped me out, a lot. Was finding things that stimulate me. Sour candy, and brushing myself with one of those skin brushes are probably the best thing I can think of. For some reason they just get me thinking. Sour candies just wake up my mind, and get me thinking straight. And skin brushes just feel really good. When I was younger, I also used to sleep with an xray jacket on. Because pressure, makes me feel really comfortable.

Karianna said...

Risperdal was a disaster for my son: he definitely "slowed down" and became just a compliant-zombie-blob instead of the bright, creative, energetic, enthusiastic boy that he is off the Risperdal.

(It was during this time that I became exceptionally worried about how any pharmaceutical agent could affect his personality, the development through puberty, and his long-term well being. To this day, I worry about whether to use small amounts of a drug to help the body reinforce certain advantageous pathways, or whether this "help" ends up creating a tolerance that becomes more "pathological." I am a neuroscientist as well as a parent, so that complicates matters!)

I am/was HFA as a child and wish I could have handled social situations with more grace; however, I did very well academically because of my quirks.

These days I long to feel comfortable with other women, so wish I could take a "half-pill" that would help me understand social convention a bit more so I could "fit in," but not completely dull me.

As for my son, he is still not old enough to "get" the schema to know what to say and when, yet he continues to improve. I hope puberty will help the light come on for him as it did with me (at least partially.) But I wouldn't want him to be completely neurotypical because his out-of-the-box thinking is exactly what will fuel his later passions (ie, become his livelihood.)

Many of the characteristics that make his behavior as a grade-school student difficult will be the same that give him the edge in the workforce.

I wish I could take away the hurt at not fitting in, the intolerance of people in public (as you've noted in other posts,) and other such things, but in the long run it wouldn't be worth it.

If these kids on the spectrum can "survive" the early years, they'll be fine. My worry is the hit their self-esteem takes so young given the stereotypes and intolerance is pretty hard, so they might not recover well.

So I suppose this is a loooong answer saying "No, I wouldn't want a magical pill that would make my son (or me) 100% neurotypical."

BCC said...

A love like this makes you supreme.

(hat tip to John Coltrane)