We will soon be coming up to the four year anniversary of Sams diagnosis of autistic spectrum condition. That vernacular has probably changed since then, I don’t know. It’s what we were given on diagnosis day.
So if we’re to go off that, it is a condition that my son lives with, has since birth and that we’ve supported for the last 4 years.
During that time, I can’t count how many times I used to think and say out loud “What I wouldn’t give to spend a day inside his head, see the world through his eyes.”
Even though I’ve been able to train myself in ways designed to make things less demanding of him, the basics like giving him time to process requests, limiting the language I use when talking to him. Not using 10 words when two will do. Giving him space when I can see he needs it. These things work for everybody whilst reducing the stress he can feel.
I’ve got that down now. It’s second nature. My nature. What I find a bit more difficult is Sam doesn’t always know what he needs, or he does but they change so rapidly, that I just have to let him lead me for fear of me doing the wrong thing can exacerbate his upset 100 percent. An easy example of this is if Sam is down his rabbit hole, he, so far, seems to need me near, though not to touch him. Then he will reach out to me but push me away instantly. My head struggles to cope with that a bit but I stay at my end of the rabbit hole and see it through with him.
So, the autistic brain in my opinion simply has to be so much more robust than let’s say mine. Here are those reasons I mentioned.
My son is six years old. He started with the odd word or two about 3 years ago. He isn’t conversational yet but has a pretty big vocabulary. The one thing he can’t yet do is use any language whilst he’s in shut down. So I guess, sometimes rightly other times wrongly, but I try.
He is not blind, or deaf and has been able to see and hear the world around him since he was born. He lives in this world and sees it in a way not many of us can understand with little fuss, but lots of effort. Not everyone knows his struggle, but he is a beautiful charismatic little man who lights up the world around him and does what he does because that’s all he knows. The world is a really big place but for Sam we make it small. Small chunks to take it bit by bit, and as he grows hopefully together we can expand on our places within it. We do everything in Sammy time.
He may not understand why something will trigger somewhere within him a need to escape so violently within him he becomes frozen to the spot unable to calm himself until it passes. His adrenaline will spike so high that he falls asleep very quickly afterwards to recover from whatever he has experienced. He is six years old. Can you imagine the mental stress that must put on a person, when your emotions become so heightened you have no control. I see it often, but it is nothing I can truly compare it to. I used to think it odd that Sam could be one way then the next minute be fine and move on. It’s not odd, it’s the complexities of his brain. And I’m guessing here, but for him I imagine a switch that he can eventually reach to switch off the stress. An internal circuit breaker.
I could give you a hundred examples of the torment I witness him going through, but for me that is not the hardest part to see. The hardest part is afterwards, when he is in a daze, wiped out. Recovering. That breaks me a little. He is six, experiencing a gamut of emotions I don’t have the ability to comprehend. To go through that level of stress regularly is something as a parent we see because we are there, and we can empathise but we can’t know. We all only know how we feel, and if like Sam you can’t explain it or reach out to ask for help and you dust yourself off and try again every single day. That is brave.
That takes a strength I can do nothing but admire. And be proud that my son with his differing neurology is so strong at 6,5,4,3,2 & 1 year old, when I think of it like that, I’m sad I can’t take the stress away but I’m in awe that he walks through it, mainly with a laugh and a smile on his face.
So when I said I used to wish to see inside his head, I recently realised that if I were to go in there, just for one day, I couldn’t handle it. I don’t think any of us not on the spectrum could. I’d still do it, I’d do anything anytime to understand my boy better. But I don’t think the neuro typical brain could hack the depth of how I perceive the autistic brain to be.
So to my child and the millions of autistic adults and children know this. You are strong. By god you are. One bad day can leave me feeling deflated for days. You too probably, but you bounce back and you do it all again. It’s your neurology, it was designed that way. It had to be.
This video was shown on one of the first courses I did and it resonated so much, it helped me start to see things from a different angle and I wanted to share it with you. It’s less than two minutes long. Superman vs autism.