Saturday, May 7, 2011

Give a boy a pill?

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The Thinking Person's Guide to Autism, (aka TPGTA) which is by far my favorite blog about Autism, posted this via Facebook Saturday morning:

I immediately ran my mouse over the link and clicked to read the post where a woman on Blogher (a network of women bloggers that wouldn't add me to their network because I use Adsense so I can earn an extra .03 cents a year, so I'm not linking them. Pllbbbttt!) wrote that yes, she would give her a child a pill to cure autism. That made me wonder (and not about tea in China) if I would do the same thing.

I realize that the TPGTA pretty much believes that the idea of a pill to cure people of their "disability" is rather offensive. I understand why as a lot of grown-ups with autism write for or sit on the editor panel of TPGTA. I'm pretty sure they like themselves just dandy and don't feel like they need to be cured. I don't think they need curing either. One of my favorite contributors (and challenger of my mind) is a rather brilliant and interesting writer/college student/girl/spectrum sitter named Zoe. I can't imagine what would happen to her quirky, fun, thoughtful blog posts if someone gave her a pill to "cure" her.

These people who have contributed so much to not just the autism community, but to all of society are who they are partly because their external experiences and partly because of their internal processes. At one point they were kids. And had someone "cured" them with a magic pill, they would not exist as they do now, which means what they contribute to society would be lost.

But what if there were no autism because we could cure it? Because as nature, biology and evolution are incredible creatures, there would be something else—actually, there are lots and lots of things already besides autism. It's just one issue humans face as a species. And while our society has gotten better at dealing with people who have issues, we are by no means tolerant or in a Star Treky ideal of acceptance of people's differences.

Before we set out to make a pill to cure autism, I'd like to see someone cure bigotry, intolerance, fundamentalism, and addiction. That's just me, though. Frankly, I have never met a person who was issue-free. Everyone has something. The idea of curing autism because its uncomfortable for children, I understand. No (normal*) parent likes to see their kids suffer with anxiety, social relationships, from seeming irrational fears, or be stigmatized.

Yet, as a normal child, I remember suffering from irrational fears (the dark, cotton balls, construction vehicles, those aliens on Sesame Street), social anxiety (because people, especially in cliques are mean as a hell), I had problems not just expressing myself, but finding a voice that people (read: adults) listened to, and lots of things and experiences made me uncomfortable as hell. I was considered a normal child. But good gravy, childhood ain't easy. I think autism exacerbates the horror of childhood in a way that parents and adults need special training to begin to understand. Autism makes you take normal and conventional and throw it out the proverbial window.

We are who are partly because of nature and partly cause of nurture. And you know what? Normal people aren't any better at relationships than autistic people. It just happens that normal people have a set of arbitrary rules that make sense in their brains. Captain, that's illogical.

To avoid further rambling and Star Trek references, let me take some points made in the aforementioned "Yes, I would" and put my logic to it:

If there was a pill that would allow him to walk into the kitchen when there was already food on the table and not make him gag and have to run out of the room... I would give it to him.

I'm learning, thanks to my neighbor who works with autistic children, that sometimes these things are sensory related and other times preferences. I haven't had the pleasure of tasting this mother's cooking, but many o' time my son has expressed his distaste for certain foods, while others, for him and the meal du jour (because according to my mother-in-law I don't feed my son) it's an inability to process the smell/texture/color thanks to autism. So a pill wouldn't necessarily cure this issue and might scar this mother's cooking-ego to some degree. Not all of us are blessed with mad culinary skills.

And if there was a pill that would help him be able to navigate simple social situations without anxiety and without the ridicule and torment that I know he will face some day... I would give it to him.

Damn, if there were a pill that cures this aspect for an autistic child, why stop there? Millions of children are tormented in social situations every single day. Neurotypical kids. I was tormented by my sisters. I had my entire 5th grade class turn on me one fine day for god knows why. Some people are mean. Everyone faces these really, really tough social situations at times. A pill won't cure it. Or maybe an anti-assholery pill for the mean-spirited people (young and old) who think its okay to hurt people with ridicule and torment would. Cure the right problem.

And if there was a pill that would take away the unexplained and extreme anxiety about the fact that the light in his brother's room is on a dimmer switch... I would give it to him.

Dimmer switches are evil. When I want light, I want freaking light. Switch it on, baby. Dimmer switches are for romance and no child is bringing a hottie back the their actual crib. Dimmer switches are also easy to replace. How about demonstrating the human ability of being able to control our environment by going to Home Depot as a family and purchasing a simple light switch? If dear brother needs some night-light, they make those, too.

Plus, they make anti-anxiety medication that helps people including autistic children. There's a supplement called 5HTP, which isn't all pharmaceutical and junk, but something we tried for our son with the recommendation of his doctor (which helped some, but not enough). It's important to have great doctor who knows about these sorts of treatments and who is willing to guide you through these treatment choices. And there are coping skills that can be implemented to help a child live with and learn to self-reduce anxiety. It takes hard work and patience, but eventually you'll beam with pride when you see them practice the skills without prompting.

Combining environmental control, coping skills, therapy and medication can yield fan-freaking-tastic results!! (Now imagine I'm saying that to you like Billy May's ghost for dramatic effect)

And if there was a pill that could help him take the thoughts that he has inside his head and form them into words, without having to struggle, and without frustration and with enough clarity that other people understood what he was saying... I would give it to him.

Normal people have a hard time with this, so I get it. A pill to help self-expression will never, ever be invented. Or will it? I don't know, but this is a human challenge, not just an autistic challenge. Some people are damn fine communicators others not so much. Hell, at times I struggle to convey what's inside my head, just ask my husband. Writing (look, ma, no hands!) is a huge challenge for me and one I was not able to get a grip on until I was 24 years old. I seriously remember the moment I wrote my first coherent essay. I emailed it to my dad, who writes and edits for magazines for fun because I wanted to share my accomplishment. Communication and expression are mastered by very few humans, the average person just squeaks by.

But on the other end, I'm pretty good at deciphering meaning in what said or unsaid. Everyone's skills aren't evenly plotted on a chart, including those with a disability (which are more scrutinized). It's just that with autism, the challenges in communication aren't conventional. Being an a parent of an autistic child, you have work with yourself and your child until… (as Dr. Phil would say) Until the frustration wanes because you've found something that works to help your kid's ability to communicate. (There's an app for that, by the way. There are also specialists, several, don't settle for one that doesn't fit and make yourself a specialist, too).

And you know what? Some people are terrible listeners. The problem may not be the autistic child, but the person they are communicating with—hearing and listening aren't the same. I don't know many adults who are adept at listening. Assuming that the frustration of an autistic child is solely because of the autistic child is plain not fair and inaccurate. Sometimes the listener is a dolt. Listening is an under-developed skill in a large portion of society. It's insulting to me that one assumes frustration with communication is due to autism. (Remember what it was like to be a teenager saying "Mom, you NEVER listen to me"?)

As for me giving my child a pill to cure autism? My kid takes a variety of pills already to help deal with the symptoms of autism, but only because other interventions did not solely alleviate the symptoms to a high enough degree. It's about quality of life. And after getting to know autistic adults through their numerous writings, I don't think I'd give that pill to my kid: The way my child sees the world because of autism is absolutely amazing and invaluable to society because of his interactions with others, because of his honesty, because of intelligence, because of his integrity, because of his innate ability to see and understand what others do not because of autism. The way the world sees him is crap, so who needs the cure, really? Pills for arseholes? Definitely.

Of course, this is my opinion. I can't speak for the other parents whose children are on other parts of the spectrum, but I think they'd agree with my last statement of the last paragraph. 

*normal as in non-child abuser, decent, loving parent


Zoe said...

Wow, thanks for the link! Don't worry, if someone ever came at me with a Magic Cure Pill, I'd fight them!

(That's a joke, because, on a more serious note, I think it's probably impossible to cure autism in a living person. However, it may one day be possible to prevent autism by aborting fetuses with certain gene combinations -- that's what a lot of people want, but I think it would be terribly sad.)

I totally agree with you -- I hear this a lot where people say we should cure autism because autistic people are bullied, and it doesn't make any sense. Isn't the problem there with the bullies? You're correct in saying that they're the ones who should be cured -- of their obnoxious bullying ways.

Carrie said...

You say "However, it may one day be possible to prevent autism by aborting fetuses with certain gene combinations -- ...."

I could not imagine my life without my boy! The thought of aborting based on a risk of autism makes me sad, too. Could you imagine all the great minds taken from the world if that was known quantity from day 1? We'd probably still be living in caves.

I really get a lot from your blog, especially now that my kid is growing into his own voice. Thanks for the comment!!