I sat on the end of the sofa and blinked slowly as my tired eyes followed Lloyd around the room.
It had been only a few hours since Sawyer was given a formal diagnosis of ASD. Both of our children were in bed and my mind was still buzzing with it all – filled to the brim with an odd mixture of relief, sadness, confusion and exhaustion. My head ached. My heart felt heavy.
Our son was autistic.
I silently waited for Lloyd to sit down so that we could go over the day’s events and talk about what had happened. Maybe cry a bit? I didn’t know. I rolled my own thoughts and feelings around in my brain, trying to put them in some sort of order – trying to understand them. It was the first time either of us had been through anything even remotely similar to the situation we found ourselves in – but we were at least, in it together. We could support each other, I comforted myself.
After what seemed like an age, Lloyd sat down adjacent to me. He briefly felt around for the TV remote, and as he picked it up he happened to catch my eye. He smiled a familiar smile.
“What’s up?” he asked.
As if nothing had happened at all.
When Lloyd and I sit down to discuss how we should begin telling his story, I have no idea how the conversation will flow. I know he is keen to get his story out in to the world, but he has never been much of a talker, and his feelings are often difficult to extract. Frankly, he finds these types of conversations incredibly uncomfortable. I suggest we start right at the beginning, we both take deep breaths – and we jump right in.
I start by asking Lloyd if he can remember the first time autism was mentioned in relation to Sawyer. He looks around as though he is searching for something, and although I don’t look, I can see in my peripheral vision that he is wringing his hands. He thinks more deeply than I expect, and when he eventually starts to speak, his voice sounds cracked and awkward. He carefully admits that he can’t remember the first time autism was mentioned, but that what he does remember is that when Sawyer was very young, I would call him crying, sobbing down the phone telling him that something wasn’t right and that I didn’t know what to do.
Sawyer was less than a year old when those phone calls started, he tells me, and again, he looks sad. After a short pause he then makes the incredibly honest and brave admission that he thought I was overreacting, and that I was trying to draw too many comparisons between Sawyer and his peers. He explains that Sawyer was his only frame of reference, adding that if Piper (our youngest) had come first, he would have seen the differences in Sawyer’s behaviour very early on. He tells me he feels guilty about that now, and wishes he had been more supportive.
We sit in silence for a while, taking in everything that has just been said. I think he surprised himself with his words. I suggest we talk a little bit more about denial and ask him when he thinks he fully accepted Sawyer’s autism. He knows immediately, without pause, and he tells me it was the summer of 2017, which was 4 years after Sawyer was given his formal diagnosis.
In the summer of 2017, while the rest of us hid away from the stresses of everyday life in a luxury Spanish villa, Lloyd felt unable to do the same. It was no secret that he had been going through an incredibly difficult time, but we hoped a holiday would do him good, and Lloyd had hoped the same. Alongside many personal struggles, it was coming up to the 1-year anniversary of his good friend’s untimely death, and it had affected Lloyd in a much bigger way than any of us had expected. The grief was as strong as it had ever been, and time away in the silence had backfired, forcing him to think about things with more clarity than ever before. Included in this, was Sawyer’s challenging behaviour. Which suddenly stared him directly in the face, in a situation he was unable to escape.
Back home, Lloyd explains, he only saw snippets of Sawyer’s unusual behaviour – both before and after diagnosis. He saw the same issues and problems day in and day out, and had learned to cope with them as if they were normal. But suddenly, secluded, spending 24/7 in a villa with Sawyer, he could no longer pretend that autism didn’t exist. It was everywhere. In the noise of the airport, in the heat of a hotter-than-usual country, in the unfamiliar food, in the temperature of the pool, and in the mattress he slept on. Autism had followed us.
And that, Lloyd tells me, is when he realised autism was part of our family.
And that it would never go away.