For a long time, when trying to explain communication, interaction, and understanding with Max to those around me, I’ve used the imagery of an invisible set of chains wrapped tightly around his head. They’re thick, heavy chains, and no matter how hard Jamie and I try, no proverbial crow bar or bolt cutter can remove them. And when we try, the chains seem only to tighten more. It’s imagery that is painful to think about, but it’s the best way I can explain it.
My job as Max’s dad is to walk alongside him, protect him, teach him, help him grow and develop, and love him unconditionally. That unconditional love is what makes the imagery so hard to bear. Man, I love that kid. When I can’t break those chains that bind his mind, I feel completely helpless and my heart is crushed. Imagine this happening to your child. Imagine they were locked in a jail cell and you couldn’t get them out. Imagine any other sort of imagery you can think of that represents this barrier to communication and relationship.
I talk a lot about the positive attributes of having a child on the autism spectrum, and encourage others to live life to the fullest, no matter what their circumstances. But I’d be painting a false picture if I didn’t ever mention the devastating aspects.
As the years have passed though, and Max has gotten older, this narrative is beginning to take on a different tone. My frustration of not getting through to my son has slowly changed to recognition that he can’t clearly describe to me the things he’d like to. The chains have become a two-way barrier. Whether he gets tongue tied, radically changes the subject, or is brought to tears because he doesn’t know how to say what needs to be said, it’s clear the chains have caused more problems than I originally considered.
I’ve spent a bunch of time listening to autistic adults recently. It usually involves the challenge of discussing autism, its advocacy, its prevention, its care, and the breakdown between what we neurotypical people say and how the neurodivergent mind receives it – and vice versa. That discussion will hopefully evolve throughout this blog over time. But one recent topic was particularly revealing.
An autistic adult on Twitter asked other autistics to try to explain the difficulty of assembling their thoughts and responses in a way everyone (mostly neurotypical people) could understand. My mind was blown reading through the responses. Many mentioned that the millions of thoughts swirling around in their mind were next to impossible to assemble into a logical response. And that the frustration caused by trying to get there actually magnified their sensory overload challenges, causing physical pain. Some mentioned that they felt their thoughts were in a different dimension, and if they could just bring people to that dimension, people would be able to understand them better. Almost as if there is a different language or code that exists only on another plain, and if someone could just be there in that dimension of time and space, it would make sense.
Again, mind blown.
My heart breaks for my son. What is going on inside that mind? What is he struggling with that he can’t even explain to us? When he is frustrated and irritable, and we ask him why, are we making it worse because his challenges are compounded by not being able to articulate it?
There’s no way to know yet. As Max gets older, maybe there will be opportunities and moments of clarity when he can break through the chains. But I’m left with one very real notion.
Autism is fascinating, and there are many things about it I’m sure I’ll never understand. It’s so complex and overwhelming to think about. I honestly don’t think my neurotypical brain has the computing power to interpret it all, even if Max could articulate it. I want so badly to understand. I want so badly to help my son and for him to help me. There may be breakthroughs, and yet, we may navigate this life with an unavoidable disconnectedness. The extraordinarily fascinating way his brain works might always be lost on my simple methods of processing. I may always carry a sense of inadequacy when it comes to communication with such a complex mind. I’m left with the overwhelming feeling that Max isn’t the only one that wears the chains…
I have them tightly wrapped around my head as well.
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