"We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time. "
- T.S. Eliot "Little Gidding"
Its 4.30am and I woke up struggling with various concepts - scientific and personal. My son has Autism Spectrum Disorder and it's the most interesting puzzle I have ever encountered. He is not the puzzle though - the ASD is. It is hard to disentangle the boy from the thing. He suffers from it to an extent - the GI issues, the emotional dysregulation (and the meltdowns, God the meltdowns), the social misunderstandings, the sensory sensitivities, the anxiety.
Separating the boy from the thing - the challenges - is a necessary but artificial construct for us (my wife and I) to attempt to address the challenges and love the boy. To attempt to extinguish what causes him pain and yet let the boy himself grow and expand. And yet pain is part of life and yet few children go through what he goes through, and yet some suffer worse.
And yet . . . . and yet . . . . .
Will he grow out of it? Or grow into it?
What is this blog about? It is a father's ramblings about the challenges my family and I face as we step into my son's Autism. The Scientific aspects. The parenting aspects. The philosophical aspects.
Let's start with the simple question - "What is Autism?"
This question is complete and all encompassing - it dominates my life in some ways, not because of some awesome struggle to fix things, but curiosity. "He" doesn't need fixing and yet he needs help and supports. The dichotomies seem endless - he needs a loving, supporting father and yet I must detach to see things as they are and not as I would wish them to be.
I cannot help him if I am emotionally over-involved. I must suppress ego too. The mission is more important. I must gather data - look for correlation - hunt for causation. And yet when the meltdowns come and the voices rise I am still his father - the frustration comes, I feel his pain, I don't understand it - he's melting down over the simplest things but he's not.
There's a cause there - a culmination of events - anxieties, GI pain, lack of sleep that lead to this point. An iceberg where most of the causative events remain hidden beneath . . . . And all it takes is that final straw and BOOM! We must search beneath for what is hidden.
During these meltdowns he is in emotional pain - we all are - the whole household - mother, father, his sister - the boy himself and even the dog.
It is challenging but again - we must suppress the emotion, the panicked feeling.
I hear and try to model Spock - calmly, stoically "Fascinating". Emotion is an impairment, logic is King.
I just checked the date and it's 5 Years to the day since his diagnosis.
Wow what a coincidence.
God we have come so far - we climbed Everest (after climbing K2 and realized it was the wrong mountain). We came to a wonderful place - his new school is amazing - just amazing. Unique in the world, to my knowledge. A therapeutic school that treats him and his class mates with the same love and curiosity. The people at this school are an inspiration and a great blessing. But time there will be short. He is 9 1/2 and can stay there until he's 12. My wife and I already know - the clock is ticking, what is next? We climbed Everest. What comes next? How much will it cost - not just money - that's the easy part (lucky us) - what will it cost in stress, struggle and anxiety.
The journey's not over.
"What is Autism?"
"Where did it come from?"
"Does this ever end?" asks the tired part of my soul
"We shall go on to the end . . . " I hear Churchill say in response.
Jack Kennedy chimes in too "a call to bear the burden of a long twilight struggle, year in and year out, 'rejoicing in hope, patient in tribulation'"
Lets not get too indulgent yeah? Detach. Iterate. Learn.
What the hell is Autism? It's bullshit. It's nothing. It's a description of behaviors with no more validity than "Fever". There's a there there - a cause, a background - duh, of course there is. There's genetics, epigenetics, neural circuitry, neuotransmitters.
There is reinforcement, habituation and learning.
Behaviors get reinforced for good reasons and bad.
There are fucking feedback loops and nonlinearities.
There's childhood itself.
The distributions are not even stable.
And this is N of 1.
And they key off parent responses so even the fucking observer is a variable.
Ha ha! Good luck noob!
Some say there have to be commonalities? Otherwise how do we group these children together.
I call bullshit - you don't know, neither do I.
What do we hang our hat onto?
There are processes surely, principles, metaphors to help us.
Divide and Conquer
Trial and Errors
Top-down and Bottom-up
Search algorithms
Constraint Satisfaction
Occam's razor be damned - the simple stuff is understood - Biology does not obey Occam's razor. It obeys evolution - whatever works. Why is the brain so complicated? Why not.
This is the limit of our knowledge - right here is the barrier.
In this little boy and his challenges.
I have to be his father and I have the ability to help him - to break down the problem, to understand himself so he can do what he needs to do, to go where he wants to go.
The world can be unforgiving - he needs to adapt some parts of himself and yet keep himself too.
This journey into Science into Love and into Philosophy is all encompassing.
How does one stay focused? How does one endure? This journey into knowledge and struggle is also a journey into self. Where am I in all that?
I have already gained so much and lost too.
In this journey so far I feel like Odysseus - lost and yet on a mission to home. I have seen people lost on their own journey. They are stuck though. We are moving. I have seen monsters. I have seen evil and apathy, ignorance and quitting - lots of quitting. And I have seen heroes in the most unlikely of places. Amazing heroes. Unsung. Undaunted. Unrelenting. Unstoppable. Filled with love and humility and curiosity. And talented as hell.
This is my own Odyssey but we're not home yet.
If I could have one thing what would it be?
To understand - just to understand. And when we reach that understanding will we truly know "this place for the first time"?
I sure as fuck hope so. It's 5.30am. Let's begin shall we?
