I have three things I need to say to you.
First. Come. Talk. Find a safe place where you can talk without being judged, somewhere private, somewhere and with someone(s) who will understand and listen.
Second. Fear. Feel the fear. It’s impossible for me to talk about autism without talking about the abject fear I used to feel, every single day, every moment. They say fear can be informative. This was not my experience of it in the beginning, I was running too fast and doing so much to avoid it. Fear drove me to do a great many things I regret. I wish I could tell you I have no regrets, but I do. So, so many regrets. Avoiding the fear is just one of them. I wish I’d sat with it. Leaned into it and listened to it, without believing what it whispered to me as though it were fact. Listen to it, but don’t believe it. Who knows what I might have learned all those years ago. Who knows had I done that, what mistakes I might have avoided. Who knows?
You see, fear was the driving force behind my relentless search for a “cure”. Fear is what made me think anything I did was better than doing nothing. Fear drove me to rationalize some dangerous and very risky “interventions” because I thought to do otherwise was wrong. It was my fear that kept me up at night, on the computer, typing one more search word into Google’s vast engine, hoping I would find the thing, the remedy, the treatment, the pill, the tincture, the doctor, the nutritionist, the biomed doctor, the QiGong Master, the homeopath, the naturopath, the GI specialist, the thyroid specialist, the speech therapist, the occupational therapist, the cranial sacral doctor, the shaman, the Zuni chieftain, the psychic, yeah you read that right, the psychic, each and every one of these people I put my faith in. I convinced myself that this person, finally would be the ONE. They would reach out their hand and show me the path I needed to take.
All those words used to describe autism and Autistic people, our children or parents or siblings, all those words like, “burden”, “epidemic”, “crisis”, the war terminology evoked telling us how we must “fight” and “combat”, all those words like crumbs left in a dark forest were words I believed and used and never, never once during those early years did it occur to me to question them. For those who did, well, they obviously didn’t have a child like mine. You had a child who was less profoundly affected by autism than mine. This was my thinking, this is what I believed in my heart. (This is my story, it may not be yours, but it is the only story I can tell.)
Third. There is a documentary I love. I have watched it many times now. It’s called Wretches and Jabberers. I’m not going to tell you more, you just have to see it for yourself. It’s available on iTunes, Netflix and Hula. You can purchase a copy from Amazon. Even if you ignore every other thing I’ve written here, just watch it. It is a documentary that every human being on this planet should see, because it is about more than just autism. It is about our beliefs and how our beliefs make us behave in ways we might not otherwise condone. It is about prejudice and fear and ingrained thinking and the inherent limitations all of that encourages for those who are different.
And finally remember this – just because someone does not speak, does not mean they have nothing to say. Just because someone cannot make their needs known, does not mean they have none. Just because someone does not tell us they love us does not mean they do not. Just because someone does not look at us, does not mean they do not see us. Just because they do not seem to understand in a way that we recognize, does not mean they do not and cannot. Just because we think they are ignoring or cannot hear us, does not mean they are or do not. Just because we think someone cannot write or read does not mean they can’t or never will.
Just because we feel, in this moment, we cannot handle something does not mean we can’t. With support, we can and we will. And so will our children. They can, they do, and with help, they will. Believe this and you will not only help your child and yourself, you will help the world and all human beings who inhabit it.
Choose to believe.
Emma on her 4th Birthday – 2006