Happy World Autism Awareness Day, Daily Kos! (Link to previous World Autism Awareness Day diaries)
I've been wishing that to all of you for 6 years now, but the times they are a'changing. A wonderful and interesting thing is happening out there in the world of autism; kids are growing up. Kids and former kids on the spectrum are starting to speak up. The internet has allowed them to express themselves in ways they might not be able if they had to speak in front of a crowd. My own girl hasn't yet started blogging, but her art is her chosen method of communication for now, and it speaks loudly. Her website, www.EllieCastellanos.com, features a lot of it. I invite you to go explore it and see what Ellie has to say.
Turns out a lot of these kids have a lot to say, and as a parent and advocate for my daughter, I've felt it's been my duty to listen, to read, and to think hard about what they're saying.
Some of it is controversial. Some of it is painful to me as a parent. But at the same time I find it awesome and thrilling to hear these voices speaking up and creating a powerful community for themselves.
My daughter with autism was born in 2000. Autism was not on my radar. By the time it was patently obvious that she had autism, at age 2 or so, there weren't a lot of resources for parents. To say that I have learned as I go is the understatement of the century. To say that I've raised my daughter by trial and error, you must place emphasis on error. I don't think my story is unique in that sense, especially for those of us whose kids with autism were born in the 20th century or very early into the 21st.
As a parent, you make mistakes, but as you are making them you pat yourself on the back for your wise and learned parenting decisions. It is only much later that you learn how badly you f***ed up.
When Ellie (my daughter with autism) was young, there was a lot of talk of "cure". In some circles, there still is, but it is now a highly charged, controversial topic. I bought into the "cure" talk when Ellie was young, especially when it appeared that she would be very impaired, and we feared for her future. My opinion on "cure" changed one day, when I watched a video of a DAN (Defeat Autism Now!) conference, which focuses on a cure. There was a parade of "cured" children marched through the room, as onlooking parents clapped and cried. You could see the electric desperation on their faces. They wanted their child to be in the parade. They wanted their child to be cured. It was a spectacle that horrified me. I didn't like to see the children paraded around like that, like they had won some sort of competition. The atmosphere in that room was uncomfortable and disturbing to me.
Here's what they didn't know, and I didn't know. There is no cure for autism. No child has ever been cured from autism. Some children benefit hugely from early intervention. Some children don't. Some children seem to have early impairments that fade as they mature; others don't. These children weren't cured by the DAN interventions. They simply followed their natural path and the parents declared their children "cured".
The search for a "cure" can involve dangerous and invasive interventions. There was a diary series here at Daily Kos by one of these youngsters (here and here) who has since grown up and wants to share with people how harmful it can be. Voices such as these are critical moving forward from awareness to acceptance of autism and the place it takes in our society. This young man, and my own daughter, were subject to interventions that were not only unwise and potentially harmful (though luckily no harm fell to either), but unnecessary.
The most valuable lesson I learned from my early fumblings around as a parent of a child on the autism spectrum was this: watch, think, read, learn, ruminate, seek varied opinions, including your own, before making decisions.
Now we have even more sources of information to draw from, and these may be the most valuable of all. The voices of kids who have grown up on the spectrum. What I'm finding as I read more and more of these stories, is that I'm not alone in many of my thoughts on autism, and that I'm dead wrong on others.
Here are a few things I have learned lately that surprised me:
Other things I have known all along but had never seen them expressed so systematically before:
Sometimes as a parent I feel as if I'm walking on a tightrope. I want to advocate for my daughter without presuming to speak for her. I am told on the one hand by some teachers that I "underestimate" my daughter because I insist she doesn't need to learn to work in a store because she will never work in a store, not in the way they want her to. Working in a store would force her to work around her deficits rather than working with her strengths, of which she has many. On the other hand I'm told by autism self-advocates that I should teach my daughter to advocate for herself rather than advocating for her. In that way, I'm again being told that I'm "underestimating" her. I wish someone would explain to me how I should teach a girl who seems to have no interest in conversing with anyone how she could self-advocate.
Through it all I think the skill most valuable to me is the ability to listen, and to be open. I am learning a great deal and I do have faith that my daughter will find a vocation, probably not in a store, and that she will learn to self-advocate, probably with my or others' help.
Please join me and many others in moving beyond simply being aware of autism, and accepting that there are a lot of people with autism out there (newest CDC numbers place it at 1 in 68) and that they have their own stories to tell. It's time as parents to turn over the baton and start listening to their needs instead of assuming we know everything that is best for them all the time.
It's time to accept that we have autistic co-workers, neighbors, family and community members, and that we might need to accommodate ourselves to them instead of always asking for the other way around.
It's time to accept that even though autism comes with challenges to individuals, families and communities, it is not a tragedy, and they are not a burden. If you think that kids with autism are a burden, then you think that all children are a burden. They all come with needs and challenges that effect us in unexpected ways; yet rarely do you hear anyone referring to a new baby as a "burden" or a neurotypical child as a "burden".
It's time to accept that communication comes in many shapes, forms and sizes, and to be creative in our "listening" skills. Sometimes listening means putting yourself in someone else's shoes to try and figure out what they are communicating to you. You don't just use your ears to listen.
Autism is here to stay. It's time to stop broadcasting awareness and start accepting that autism is a part of our humanity and community, and that they have a lot to offer the world. Get to know an autistic person on their terms and you'll find your own world expanded in ways you might not expect.