by Caitlin Wray
A few weeks ago, I shared the details of a seminar I attended with renowned Asperger self-advocate and speaker, Liane Holliday Willey. From a practical perspective, it was jam-packed with phenomenal insights into life as a child, and now as a mother to a child, with Asperger’s. But something happened in the seminar that had nothing whatsoever to do with the practical. It was an insight into what, despite the often exhausting and heart breaking challenges, makes Autism beautiful.
Let’s begin in the middle, because it was in the middle of the seminar that Liane began to speak about the foundation her father (who also had Asperger’s) laid for her from early childhood. What happened at this point in the seminar solidified my long-standing belief that one of the core assumptions about Autism is entirely backward. That being the assumption that Autistic people don’t feel as much as we do. That they don’t connect, don’t empathize, don’t experience emotions to the extent the rest of us do.
It was the point in the presentation where Liane began speaking about her father, who recently passed away. In an earlier post, I shared how Liane’s father had been her everything, the one and only person on the planet who truly understood her. So powerful was their bond, that she feels she may not have been able to go on living after his death, if she had not had children of her own to consider. Her sorrow was that profound.
I think most of us with kids on the spectrum have seen glimpses of that kind of profound sorrow and sensitivity in our own children. That ability to go to a very dark and distant place, very quickly. Liane expressed something I have sensed about my son often, but never really knew how to specifically identify: she said that autistics don’t become emotionally close to very many people, but when they do choose to be close to you – they do it with their whole heart, their entire being, with complete abandon.
So when that person leaves or is lost, the pain is magnified immensely – to almost unbearable levels. It is for this reason that she emphasized the need for a parent to ensure they are not the only person in the world who understands and adores their autistic child. Share that love, intentionally, among others who you trust to be close to your child. Don’t give up until you’ve created multiple, lasting, very close emotional relationships for your child with another family member, caregiver, or mentor.
After sharing this with us, she tried to speak about him without losing her composure, and the room fell silent – out of somber respect, yes, but more so. We were all in a kind of neurotypical trance. It was something I will never forget – because it was possibly the most moving, and completely guileless display of human emotion I have ever seen. It was something so organic, I’m honestly not sure a neurotypical would even be capable of it. Because regardless of the depths of our own emotions, they are always shared in an emotionally charged environment – one which recognizes and responds (even subconsciously) to the perspectives, interpretations, and presence of others. We can never quite liberate ourselves from that awareness of others and how they are receiving us, so even our best attempts to be genuine are shackled by it.
Liane’s was not.
As she spoke of her father, it was clear she had not anticipated becoming upset. Upset in that hallmark autistic way: raw, bare emotion. She began to crumple, physically, as she described how her Aspie daughter was the person who saw her dad fall and heard the crack of his head against cement, and was the person with him for his final words. I don’t think she even intended to share these painful details with us – they were just streaming through her. We felt a lifetime of invisible memories flood the room – and we were all awash in them, unspoken though they were. Her pain was child-like in its disregard for the presence and comfort of others. And because of that, it was pure. It was, in a heart-breaking way, almost magical to watch.
And this brings me to why Liane’s seminar was transformative for me: no matter how firmly I believe my son is whole and perfect in his own right, no matter how much I write about my distaste for curative approaches to Autism, there is no escaping the fact that all conversations about Autism are underpinned by an unspoken assumption that they need to be more like us. That somehow – though it may never be openly discussed in these terms – somehow their humanity is incomplete, along with their neurology. This ‘sub-human’ concept has fallen like a shadow onto all groups of differently abled people throughout history. Those with visible disabilities have begun to emerge from that shadow, but those with invisible ones still often find themselves there.
But the experience in Liane’s seminar shatters that misconception. And it begs the question of neurotypicals: Are we closer to our own humanity at the moment of our birth, than we are in our adulthood? I have long since lost my connection to raw emotion, a connection I am certain I had in my youth. I am far too concerned with appearances and the judgements of others to ever lay myself bare the way that she did. But which of those ‘ways of being’ is closer to the heart of what it is to be Human?
The naked, awkward way in which Liane allowed herself to be overcome as she spoke about her profound love for her father – it was fundamentally autistic. And when I think about what fundamentally makes us human… I wonder. I wonder if the 36 years I’ve spent building up my neurotypical armour has, in effect, shielded me from what it really means to be human.
What I know, is that in that moment where I was pulled along with a room full of strangers into Liane’s naked pain – in that moment I felt keenly… that she was more human than I.
About the Author: Caitlin Wray is a mother to three boys, including Simon, who has sensory processing disorder and Asperger’s. This piece first appeared on her blog, Welcome to Normal, and is reprinted here by permission.