Last night we returned from the Institute on Communication and Inclusion’s facilitated communication conference in Syracuse. I cannot quote Em on this blog any more. Going forward I will write about my reactions, thoughts and words. And while I feel a little mixed about this decision because I think her words are proving to be far more eloquent and astonishing than mine, it is the only decision I can make given what she is saying and what we are learning. Having said that, the conference was all I’d hoped for and so much more. We met many wonderful families, other children Em’s age and younger, adults, young adults and teenagers, all of whom communicate through FC and are in varying stages of becoming independent. A number of the presenters had gained full independence and had gone on to get their undergraduate and graduate degrees.
For those of you unfamiliar with FC, it is a method of support, which provides resistance to the typer, in Em’s case to help her slow down and not impulsively hit whatever key is closest, or to perseverate or write some of her default scripts. A facilitator is never to direct the typer’s hand, but is there to offer emotional, physical and, as needed, verbal support, to help establish a rhythm so that the typer is free to communicate in ways they are not able to verbally. Ideally this support is then faded over time allowing the typer to communicate independently. Learning to facilitate properly and well is not simple nor is it easy, though it looks ridiculously easy when watching someone who’s been doing it for more than a few decades. It requires patience, practice, confidence (in both yourself and in the person you are facilitating) and calm.
As a non Autistic, fully speaking person who can both speak and communicate through writing, relatively easily, it is often difficult to understand what the process is like for those who cannot. It is easy to view someone who is non-speaking, who has fine and gross motor challenges, who may script or make vocal, seemingly nonsensical utterances, as a person who is the sum total of what we see. If that same person then displays insights, a brilliance and clarity regarding their surroundings, thoughts and life, a sensitivity and intensity of feelings for themselves and those around them, our limited non autistic brains have trouble making sense of what may seem to us to be a disconnect. However it is imperative that we not remain locked inside our limiting assumptions. It is imperative that we open our minds to the idea that not only is there far more going on than we might assume, but that all human beings have the desire to communicate and connect with other human beings, despite what we think or how we interpret another’s behavior.
I cannot do the conference justice in a single post or even several posts. Far too much was covered, there were too many moments of discovery, insights, moments when it all began to make sense and fall into place, but I will say this – if there was one thing, just one thing I wish someone had said to me and I could have done when we first got Em’s diagnosis, it would have been this, ”Believe in her intelligence.” I am not talking about wishful thinking or believing in fairy tales and magical potions or waking up to a child who is able to verbally express themselves with power and poignancy. I am talking about believing in her ability to understand and articulate far more than I was able to see or acknowledge and finding ways to help her do so. This is a glitch in my specific neurology, not hers. This is the detrimental glitch in most non Autistic, speaking people’s neurology. We have a terrible time believing that without language there can be a deep, complex and layered thinking process that is often poetic and nothing short of mind blowing. Without suspending our entrenched beliefs about what we think is and isn’t possible our children will have a difficult, if not impossible, time “proving” us wrong because they will not be given the tools they need to do so.
I do not feel particularly articulate at the moment and I’m extremely emotional. I am holding so many opposing emotions at once. I am angry, furious at how autism and autistic people are depicted and talked about. I am in a state of near apoplectic outrage at the presumptions that currently exist regarding this underserved, largely segregated population. I feel furious with the limited thinking, the prejudice, the hatred and cruelty routinely shown to autistic people. And yet, I am overwhelmed with gratitude and love for those who continue to speak out, who continue to fight the ingrained beliefs so that my daughter and those who are right behind her might have a better life than they currently have.