How much of your life have you spent (wasted?) trying to be normal? I constructed my life around the mythical land of Normal, but someone has different plans for me. Last year we were told our son wasn't 'normal', so now we're packing up old prejudices, our preconceived notions and unrealistic expectations, and we're moving out of Normal to a different... possibly better neighbourhood.

You too will find yourself, no matter who you are, joining me in this place where the only true measure of normal is which kind of weird you are. This blog will explore a journey most of us will take at some point: letting go of preconceptions about ‘normal’, peeling our fingers off the image we had of what our lives ‘should’ look like, and having the courage to re-imagine the piece of time we are given in this world.

You are now leaving Normal.

"A nice place to visit, but I wouldn't want to live there!"

Wednesday, February 16, 2011

More Human Than I: An Evening with Liane Holliday Willey Part 2


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 Aspergers. 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 Aspergers) 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 assuption 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 Part 1, 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 moreso - 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 becomming 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 disgregard 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.

11 comments:

  1. Seriously Caitlin,
    paragraph 9 of this is honestly, one of the best things I have ever read.
    What a beautiful, eloquant summation of autism's current dilemna. And its beauty too.
    Thank you for this. Your writing is just beautiful. I'm gonna have to link to this on facebook if you don't mind...it needs to be read by many!

    ReplyDelete
  2. I'm so thankful for the network of people who are "family" to me and my three children.

    As a speaker with ASD, I too have had the experience of unexpectedly sharing raw emotions during my presentations. While not what I would have chosen, I'm grateful for the bridge it has created as professionals connect with our common humanity.

    ReplyDelete
  3. You so very eloquently gave me the push I needed today, thank you. We changed providers for some of our services and yesterday was the first visit. My son was nervous and as such ALL his anxiety tic's came out. I found myself in a mix of emotions having to, yet again, explain what he does and why. Thank you for reminding me he is perfect the way he is. If only the rest of the NT's could be more like my little man--with all his tics and base emotions intact, I think we'd all be better served. Thanks again.

    ReplyDelete
  4. Amen to that. The push to be 'neurotypical' is extreme in our society. It's to a point that I don't know what it means... Our 8 yr old struggles with the extent he is realizing he is not like the other kids, and it is hurting him. He FEELS it... to the depth of his being. He can't quite express it, but we can see it. We just love him more and allow him to be the person he is. Support his interests, encourage expansion into other areas, and find a balance that works for our small family. That makes us 3 aspies in one small family... (funny what we have found out about ourselves as we have gone through the identification process). THanks for sharing your experiences.

    E in Eugene, OR

    ReplyDelete
  5. Natalie - I'm honoured you would want to share it, thank you :)

    Spectrum ES - I love how you phrased that "connect with our common humanity" - that is the concept I feel is often lacking in academic and purely therapeutic autism literature and experience. No matter what our labels and differences, we need to focus more on that concept.

    Lizbeth - I hope your little guy has a not-too-hard transition. Funny, how our kids are always labelled as not being able to understand the perspective of others (theory of mind) and yet more often than no, I am the one left feeling that I do not intuitively understand where my son is coming from. I have to really work at it - which is in effect no different than what he has to do. Yet he is the one considered to have the disorder. I think we are all 'disordered' in relative degrees to each other!

    She's Always Write - thank you :)

    E in Eugene, OR - yes. It is so often that requirement to fit an NT behavioural mold that makes our kids feel isolated, rejected, alien. I have not yet figured out how to manage that in our home. It is an omnipresent fear that I will make him feel inadequate in my efforts to understand and do what is 'right' for him.

    ReplyDelete
  6. This was a most beautiful essay! I really think you captured the magic of the moment in words. I know this because I could feel it. Thank you for sharing, Caitlin. -DenvrDave

    ReplyDelete
  7. Thanks DenvrDave, that means a lot to me, because I laboured over this one a bit... trying to convey that impossible to describe feeling. Miss you at Wrong Planet...how are things with your son? Message me at WP!

    ReplyDelete
  8. What a moving post. I absolutely concur. Doesnt it explain the meltdowns? Such an intense outpouring or overwhelmed emotion? My son when happy, excited or anticipating something he enjoys quivers with excitement. His whole being is immersed in the sensory process of happiness, and sadness, anger, frustration. Perhaps ASD brains are not underperforming, they are overperforming?

    ReplyDelete
  9. This post was absolutely beautiful. Thank you for it.

    ReplyDelete
  10. I randomly just came across this post and had to comment. First of all, you are a beautiful writer who expresses with great elegance. You have captured Liane's emotion and truth so well with your words - she is an amazing, open, honest and transparent woman. I'm blessed to call her family (she is my hubby's cousin).


    It's wonderful to see that her story provided some enlightenment for you and your experience with your little guy. It's moments like this that Liane hopes and prays for.

    Finally, just had to tell you that we actually live next to a town called "Normal" - kind of ironic isn't it?

    Blessings to you on your journey!

    ReplyDelete