Speaking Up

UPDATE: This is still a good essay of what I believe about writing for autism and what goes on between those writing that are autistic and those close to it i.e. parents of autistic children. In November, I am headed to NYC for the first time, to see a play written by autistics.
 I am excited to see what this brings to my life, process, and understanding of autism. In the two years since I wrote this post, and the five years since I presented the play Hunting Dinosaurs, that took me several years to write. I have dabbled at stretching the play and changing it as I said below, but I have still stalled out. I hope seeing through new eyes this play in New York will shake loose my writing and blend together all the years since to something fantastic coming out.
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All people have feelings. Not all people are heard or valued or seen as valuable. I wish with all my heart I could change this and all persons would be valued and felt their worth. It is hard to communicate honest intentions on the internet, but in days gone by it was just as difficult as it is a human flaw to struggle to communicate clearly. To empathize through a few words is an art and a delicate balance.

In this day and age when opinions are like popcorn, it is so easy to fall into a strong voice that pulls you one way or the next not really having any experience with whatever that voice is telling you about. We munch on the delicious popcorn until we often are sick and vomit it back up all over each other and then it isn’t as good as when we ate it, is it? This is how the broad subject of autism, if I can even call it a just a subject, feels like sometimes when it is discussed en masse. It is discovered, defamed, some find it dreary or pitiful to talk about, but how few seem to know it up close and personal, but oh yes, everyone has an opinion about it more and more.

I struggle as a parent of an autistic child when reading angry blogs of autistic adults. I do read them even though there is a lot of blame, shame, and bile thrown at the feet of parents. Yes, these are the people living day to day with autism. They should have plenty of opinions, but where I shudder is when they seem to want to be the voice for the entire spectrum. It is called a spectrum for a reason. There are people that are at every stop on that broad spectrum. Still, it is those angry voices make me want to gather up all those hurt souls and comfort them. To tell the screamers that they are valued and that I do recognize their voice, struggle, and often brilliance. And some of them, I suspect are valued greatly, even though they scream about how they were parented; they are valued by those same parents that seem so very evil to them. There are evil parents out there and not all parents of autistics are saints, but to throw all of us in one bag just as autistics they say they have been thrown into one bargain bin is wrong.

We are all people. We all have rights, feelings, and voices. Some autistics use those voices very well and some, well, scream a lot about being wronged just as much as parents “complain” about their life bringing up an autistic. Autistics call parents that complain disgusting and assume that the parents just want pity and attention. This is a delicate subject that yes, some writing is for attention seekers, but some are trying to honestly figure out what to do and so they report what goes on through their own eyes trying to see through the autistic in their household’s eyes. I know because that is what I do.

What about the autistics that have no voice? None. They don’t write, they don’t mature, and they don’t have that capacity to scream about their lives, because they live day to day to day surviving. There are those that exist on the spectrum. Their voices are locked up or hidden or undiscovered by those of us that do have voices. Who speaks for them or with them?

I see tireless parents advocating for those autistics that cannot speak. Assistants, doctors, and therapists giving over their voice for the voiceless and gladly doing it-----not for praise, or honor or some prize, but to find the person inside they have come to love, honor and respect. These unsung heroes do exist----the voiceless autistic and the one who selflessly cares for them do exist. I know them. They are both such strong people that I admire. One struggling against the body and brain they are in and the other trying so hard to help that body and brain of the one they serve and fiercely love to function better. A little progress made is triumphant. I hope technology advances to the point we can hear those voices. There is a voice inside each and every one of them. I see it.

I once wrote a play about three very different kinds of voiceless autistics and the three different outcomes of them with their parents. I was praised by many who knew nothing about autism and some that knew a lot. Then there was a group of autistics that accused me after the play ran of not knowing or writing about autism at all. I was asked to write for the voiceless specifically by a loving parent and I was screamed at from afar by an autistic that had not seen the play but had it reported to him by an unreliable witness. And that group of autistics, which none of them had seen it, blogged and blogged and screamed and screamed until I was overwhelmed and shut down and stopped working on my play.

We each come from a different perspective and understanding. I am not autistic, but as a parent, I have some understanding of autism. I say some. I am not at all an expert on the subject. Some things I merely guess about from observing my son and listening to him and to others on the spectrum that I meet. But to say that parents should have no voice or opinion or even say they don’t know anything about autism is ludicrous. I wish more autistics that do write would write about what it is they face, see, feel, and need. More first-hand accounts are what we need and then we parents can stop guessing. I did challenge the screamers to write their own play and I’m still waiting for it. I’d support it in a heartbeat.

Like I said, I mostly read complaints about what they’ve perceived as wrongs and how they are not listened to. I’m listening and so are a lot of others that really want to know about what autistics think on a day to day basis. What would make this world better for autistics, right here and right now? That is what I want to know. How can parents bring their autistic children up to be strong advocators for themselves? What do we parents need to know? I don’t want to hear a litany of complaints----I’ll stop it if you will----I want to hear if autistics have solutions or suggestions even of what I can or could change or that needs to change for autistics to feel freer, fuller, and more at peace. This is what I want to know.

I really do want to know and I need so desperately to know. My son can’t tell me. He’s getting better at communicating, but not yet. He has a lot to say and I listen to all of it. I wait to hear what I can do better to help him. I hope he can tell me without feeling the need to shout me down to do it. I love him and want the very best for his life and childhood. I want him to learn his worth is priceless just as he is now and always. I am listening. I am waiting for his voice to shout good things about being autistic and to know that is has great value all over this world. I say yes to integration, not separation and yes to accommodation not intimidation or exclusion. We need to find more ways to bridge the gap as it is deep and wide in more ways than most “typicals” realize. That I do get more and more and more.

Listening to the underlying words that were being screamed at me about my play, I think I heard the issues. I hope I did and do. I have wrestled with it for two years. As I begin to rewrite my play and stretch it and knead it into another shape, one that I pray is better and has a stronger voice that advocates for those without voices. I hope it speaks for autistics to live a good life, and that the rewrite will come down so firmly on the side of hope there can be no misinterpretations. I often go back to slog through all the popcorn to find the kernels of truth that created all this fluff to begin with. What needs to be said? What is that voice? Can I try to write as honestly as I can and represent what I am not, but what I care so much about? I will try. Pray with me as I try. As it needs to be said.