So it’s Autism Awareness Month. In case you weren’t aware. (See what I did there?)
I think everyone is now aware of autism. To the point of panicking and coming up with a dozen different theories on both causes and cures. And maybe some of those are true. I won’t pretend to be an expert–I’ve only been at this “Autism Mom” thing for about nine months. And though I now know it much better than I had before Anna received her diagnosis, I was still aware of it.
If you didn’t know, there is actually quite a bit of division amongst the autism parents and autism community at large (encompassing autistic individuals, parents of autistic children, therapists and specialists, teachers, etc.) in regards to awareness. There are actually quite a few “counter-campaigns” against “Autism Awareness Month”.
There’s “Tone it Down Taupe”, the source of which I can’t seem to find. However, if you just google it, you’ll find all kinds of individual pages that are sporting their taupe ribbons to spread their message. What message, you ask? Well, according to one blog, that message is: “It is taupe (or tan. Or beige. A non offensive, non obtrusive color) to symbolize the toned-down sensory and emotional experiences of those lacking autism.”
And then there’s “Autism Acceptance Month“, put on by the Autistic Self Advocacy Network (ASAN), which aims to refocus the energy spent on finding a cure, on building support and improving the quality of life for those experiencing autism. The important thing to note is that ASAN is an organization founded by and run by autistic adults, meaning there is no doubt about their goals and whether or not they know what is important to the autism community.
Both of these campaigns are opposed to the fear-based, panic-inducing multi-million dollar fundraising campaign put on by Autism Speaks (AS), which was the organization which declared April to be Autism Awareness Month. Their current pitch is called “Light it Up Blue”. They’ve had that slogan for a few years now, from what I understand, and there is quite a bit of controversy over the whole thing.
I’ve heard totally different sides of it, and honestly I’m slightly ambivalent as to where I stand in regards to Autism Speaks.
ASAN and other self-advocating organizations insist that AS has made too much of a profit, and does nothing to actually serve the autism community. According to these autistic adults, and many parents of autistic children, AS has used a double-edged marketing ploy to “raise awareness”. First, there is the “everyone gets freaked out” part of the campaign, wherein they talk about the statistics (which I’ve already discussed in an earlier post), and say that autism has “stolen our children”, or that it’s an “epidemic”.
Is autism more frequent? Perhaps, and I don’t want to get into that debate at the moment. But as a lover of words (logophile?) I have to object to calling it an “epidemic”. An epidemic infers that there is a contagious disease–a singular pathogen–that is spreading from one person to another. This is simply untrue of how autism works. It has many different causes, and it looks different in each person (that’s why it’s a spectrum!). It cannot, therefore, be called an epidemic.
But on with the point…
From some parents of high-functioning autistic children (including PDD-NOS and Asperger’s), I’ve heard that they have not felt represented–that there’s too much tragedy and terror in their marketing, and not enough of the positive side of autism.
And yet, on the other end of the spectrum (pun absolutely intended), you have the parents and guardians/caretakers of low-functioning autistic individuals, who also feel that their child’s autism is not being represented, because of all the fuss about autism creating geniuses and all of the inspirational stories of “recovery”. We are one of those families, whose autism looks a lot more complicated and intensive than HFA/Asperger’s looks like.
So which is it? Are they too panic-inducing, or too rainbow-and-unicorn?
Well, it would seem that AS is not really serving anyone.
But with such a complex disorder, with so much variety, it’s nearly impossible to represent everyone. But what AS could do, which they haven’t done, is provide actual support for autism families, regardless of the level of functioning. Sure, there are some “resources”, but it’s just a bunch of literature, which families already have access to through their other care providers. I’ve looked all over their website, and I can’t find a single thing that is provided for autism families that wasn’t already provided to us through our local resources. For an organization that is supposed to be the “big kahuna” when it comes to autism advocacy, they don’t have much to offer.
Most of their money goes towards research, research, and more research. Oh, and marketing for more money. For research. They are intent on finding a cure, though autistic adults have insisted that there is no cure, because it’s not a disease. I’m inclined to agree with them on this point.
I believe I’m getting slightly off-track, but I wanted to give that foundation before I explain my predicament. You see, I am still torn on whether or not to participate in Autism Awareness Month, or in what fashion I would do so.
Awareness can be good, because it can bring about more understanding and patience with autistic children in public, and it can encourage people in positions of power (like school board members, heads of health insurance companies, politicians) to enact measures that will help families with autism to get the services they need. Unfortunately, most of the “awareness” we see these days is all about fear, panic, and finger-pointing.
Acceptance is also good, because it doesn’t try to “cure” autism, but meets the autistic person (at any age) where they are, and simply helps them to create their best life, whatever that means for them. Acceptance is loving the families and providing practical support for their daily lives. No fear, panic, or finger-pointing. But acceptance also tends to create this rose-colored version of autism that doesn’t apply to all families, particularly those with low-functioning autistic individuals.
So acceptance removes the “dirty word” stigma and promotes more love, understanding, and support for individuals with autism. But awareness reminds us of the reality of a total lack of speech, of changing a nine year old’s diaper, of the constant mess, of wandering away and disappearing, of sleepless nights, and those screaming fits where all you can do is contain them and try to stay calm yourself. And our life? It’s somewhere in the middle of all that. We’re somewhere between awareness and acceptance. Between chaos and unending love.
So I’ll change my Facebook profile photo and cover photo, and my Babycenter avatar. I’ll “Share” whatever great articles or memes come across my news feed. I’ll rally with those who want to rally, sigh with those who want to vent, and create my own “Autism Awareness and Acceptance Month”, where I can nod to the hardships while still smiling fondly at my Sweet Girl, who loves to cuddle, sings without words, dances despite her motor skill difficulties, and adores animals. Because really, isn’t that what life with autism is? Some days you are at ease, comfortable, peaceful. But the next day could be torn apart by an unexpected screaming fit, or a common illness like a cold or flu, which becomes so much harder because they can’t tell you where it hurts. One day is laughing in the park; the next is crying in the middle of the night. It’s all of these things, and families need both awareness and acceptance–the fight as well as the embrace.