Tuesday, February 23, 2010

Why are we arguing over a HYPOTHETICAL autism cure?

I read a blog post by Casdok last night that kind of got me thinking. I know that each and every one of us ("us" being parents of children with autism) has pondered and probably blogged on one particular topic. That ridiculous hypothetical "if a magical pill that instantly cured autism became available to the public, would you give it to your child?" All opinion aside, it got me thinking about whether it would be some huge blessing to suddenly become "normal."

I'm "normal." I don't live a blissfully perfect life. I deal with overwhelming anxiety that can make even the most trivial things a Big Fucking Deal.

My husband is "normal." He is driven nuts by any messes in the house, and even when he's exhausted, he can't help but clean it up.

My daughter is "normal." She thinks that there are toddler eating cows in dark rooms, closets, under the bed, and anywhere else creepy. Her cow fear is so bad that she cannot be taken to a Chick-Fil-A.

My sister is "normal." She lives with an abusive scumball of a husband.

People dying of cancer are "normal." People suffering from a whole pile of diseases are cognitively "normal" but life isn't all peachy. Does this normality magically make their lives that much more wonderful? Does it make them worthy of being part of society? Does it make their lives worth more than an adult with autism, like Casdok's son C.?

What is normal anyway? If Jaymes wants to walk around Walmart repeating the phrase "Si-Si murrrrrrrrr" at the top of his lungs, what does that hurt? If he stays in diapers until he's 18, yeah, it sucks, but ultimately, who does it hurt?

We as parents take on certain responsibilities when we choose to reproduce. We are obligated to care for, love, and defend our kids regardless of whether they are autistic, gay, have red hair, become emo goth kids, or prefer Coke over Pepsi.

Until such a cure becomes available, why is there such hot debate over what each of us would hypothetically do? Why are people so angry over a hypothetical decision being pondered by someone on the internet that they will probably never meet?

I just don't get it.

For me, I love Jaymes. I love him when he's screaming. I love him when he bites. I love him while I'm scrubbing poop off his bed. I love him when he's happy, and when he's sad. I love him while he repeats random scripted phrases to himself. I love him while he spins in circles. I love him when he has a meltdown and needs to be held still to protect him and the people around him.

Autism sucks. But our kids do not. I'm all for helping these kids learn new skills, and to function in everyday life. I'm all for supporting our kids in the community. I choose to work toward helping my child, and enjoying him while doing so. I choose not to scream and yell and desperately pray for a cure. I choose not to bother worrying about a cure until the day it happens.

I choose my son. I reject the idea of mourning his existance, of wishing to have the kid he could have been. We don't need "normal" to be happy, we make our own happiness.


BEE said...

i dont get what your post is really about
are you saying if there was pill to take that would take his symptoms of autism away you wouldnt take it???
or you dont want a cure ???
im kinda confused at what your getting at here
i know that my son had severe autism is on a diet and had done biomedical treatment and alot of his symptoms of aevere autism has gone away and he is left with well they dotn really know right now he is isnt cure but he isnt severely autistic
maybe its pdd right now no one can really tell me but are you saying that i shoudl have been happy and not done all that
i look at it not as a cure but symptoms that im fixing
im not curing him lol
im helping some symptoms he has go away
if he is sick with a cold you would help him
ar eyou saying we shouldnt try to help our kids

Amber DBTD said...

Re-read the title, then the entire post. That'll answer your question best. Sometimes we need to read something a couple times t get what the writer is saying.

I'm not really even discussing the nonexistat pill or cure. I'm discussing the fact that so many people become outraged when a blogger blogs his or her opinion on that nonexistent and whether or not he or she would utilize it.

I'm asking whether "normal" is necessary to live a "worthwhile" life. "Normal" is something very few of our kids are likely to be- does this make their lives wasted, or any less valuable?

Again, I suggest you re-read the post, you seem to have gotten something out of it that I'm not sure was there to begin with. I am definitely not saying that we should be happy and not work with our kids- that would be detrimental to those kids.

I am not on a "side." Don't obsess over curing it, don't accept it and love it either. I deal with it as best I can, in a way that best helps my son. Why worry about whether to use a cure that has not even been found yet?

I choose not to look at Jaymes as needing to be "fixed" though, that comes across as degrading toward the child. Jaymes goes to OT/Speech/ and PT to learn new skills, to develop strategies that will help him function outside the clinical setting. He sees his psych for meds that also help him control certain impulses, and ultimately help him go from a seriously hyperactive, distressed state to one in which he can function, learn, and enjoy life.

I think it is wonderful that you had such dramatic results from the biomedical treatments and diet, you are very lucky. That route doesn't work on every child, my son included. And in some cases, no treatment is going to help- so yes, at that point, acceptance is the only way to maintain sanity, I think.

BEE said...

i did re read it and i get what your sayin i also read the other post too
so i get it now

i was only getting upset cuz ithought you were saying not to do anything to help our kids and that would just be wrong

sorry i got upset
i just know people that say doing nothing and just accepting is ok
and thats not

you should try lots of different therapies and things
and it sounds liek you do just thta
sorry again

Amber DBTD said...

Oh, don't worry- I wasn't upset ( :

Sometimes my thoughts make a lot more sense in my own head, and others have to read it a few times to make sense of it!

I agree, try everything that is safe and at least somewhat proven to be effective. Different things are going to work for some people, and not for others. And with some kids, nothing is going to help much. At least we can try though ( :

Jasmine said...

Very well put Amber.

Casdok said...

We make our own happiness.
Well said!

Where's the "off" switch? said...

As the mum of an autistic 8 year old, I'm glad that the cure-all pill doesn't exist.

I wouldn't want to have to make the decision about my daughter being "un-autistic" (a new word!).

Being autistic is all she knows.

What would she make of "normal"?

I'm not saying that I wouldn't adminsiter a pill...but I wouldn't pounce on it either.

It's a tough call (for me, at least) and I'm glad that right now I don't have to try and take it.

Cate said...

I love this post! There's always a light at the end of the autism tunnel and it's not a cure, it's the beautiful child with autism.

Chelli said...

Very well put, Amber. I totally agree with you on this. Normal is relative anyway, right? I also don't feel that Noah needs to be "fixed". He just needs some help and support. He's happy and that's what matters most.

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Adoption of Jane said...

I love this post!

Kelley said...

If my kids picked Coke over Pepsi I would pack em off to a Swahili Orphanage...


Amber DBTD said...

And that's why I love ya Kelley! LOL

Is Autism Treatable? said...

Thanks for your insightful and thought-provoking post on what is "normal."

Can Diet Help Autism?

Melinda said...

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Lorraine said...

When a post is this good, it's hard to think of a comment that will do it justice. So instead, I'll just say thanks for writing it, and for helping me put the concept of 'normal' in perspective.

Angela said...

Not to rain on anybody’s parade here but if there was a magic pill to cure autism, I would give it to my son in a heartbeat. That’s not to say I’d love him more if he wasn’t autistic or that it would make him a better person. But, life is hard enough. If I could take away his frustration and his inability to speak and process simple information I would. Would he have other frustrations in life? Absolutely. But he’d stand more of a chance of leading an independent, dignified and productive life. He would hopefully be able to engage in relationships, fall in love and have children of his own if that was what he wanted. He would be able to take care of himself and contribute to society.

Your post was thought provoking, but each person’s battle with autism varies to different degrees. If you had a child with autism who was violent and hurting themselves…a child who just put their head through a bus window or bites himself until he bleeds, would the decision to give your child the pretend magic pill not be without question? If you knew that you would someday have to institutionalize your child would you not give the magic pill? If you had a child who was incapable of feeling emotion, most importantly YOUR LOVE would you not give the magic pill?

I guess I also don't understand the comparison to someone normal dying of cancer to just having an autistic child. What about the autistic person with cancer? We never get a choice.

My 3 year old has a severe seizure disorder which is supposed to be related in some way to his autism…to watch my son violently convulse and crash to the ground is heart-wrenching and if this magic pill could cure autism which would eliminate the seizures you bet I would give it to him. Because we as parents want what is best for the child. And other health issues which unfortunately come with the autism package suck.

I’m considered “normal” and your right, normal is no guaranteed picnic. I have my share of issues yet to me the light at the end of the tunnel of autism looks more like an oncoming train.

Amber DBTD said...

Angela, I can absolutely see where you're coming from. Again, the point of my post was not to discuss whether or not the non-existent autism cure should be used or not- that would be an individual decision that we would each have to make based on our own set of circumstances. My point is that the fact that there are folks who verbally abuse people they don't even know over a hypothetical cure is just nuts.

I feel for you on the self injury and seizures. Been there, still doing some of it. I'm lucky that meds managed Jaymes' seizures until he finally seemed to outgrow them. They were very scary though.

The self injury and aggression toward others has improved dramatically with medication, but that was a long road to finding the right meds and it's still not perfect.

For what it's worth, when Jaymes was 3, he was a violent, seriously self injurious, nonverbal, unfeeling little guy. He has grown and changed and progressed so much since then, and at 6 he is a MUCH different child than he was. We never know where our kids will be in a few years, and though the future can look bleak, I try to have faith in Jaymes that he'll continue to progress. Of course the fear of institutionalizing when he grows up (if he does not progress a lot more, obviously) is there. It's a likely scenario, but why panic about that right now? There's plenty of time for dealing with that later down the road.

As to my less than impressive cancer analogy... My point was that being cognitively, developmentally normal is not the only thing that matters. Jaymes can have a happy, fulfilling life even if he doesn't think the way other people do.

Angela said...

Thanks Amber, I totally get it. For me, I want to stop my son's pain and make life better for him. And I do very much want to "fix" him. That's it my point is not right or wrong, just my opinion. Thanks for letting me vent:) I appreciate your post it was really enlightening on so many levels for me as a parent. I loved reading the comments from everyone as well.