I don't know, maybe, no: how I think about autism

(and maybe a helpful way for you to, too).

“Everywhere we go, it’s work.” Alex confessed his thoughts to me as we wrangled wet swimsuits off our kids and searched the oversized bag for the dry undies.

I stared back at him, unsure of what he really meant and how to take it. My silence was enough. Sometimes parenting leaves all kinds of room for misunderstandings and taking offense.

“Babe, don’t be mad at that statement. I’m just processing. I’m telling you what I see and how I feel, and I have to be able to tell you that.”

“I know,” I said in return. “But I thought we had a great time swimming. I thought the kids did awesome, and I thought Cannon had a blast.”

“He did! We did! It was a great time. I’m just admitting to you what I feel, that it never gets easier to do things that are ‘normal’. That we have to always be prepared to work.”

Of course, Alex was right. He had just spent the better part of an hour micro-managing almost every aspect of our trip to the pool. “Cannon, walk buddy!” he would yell from the water, no less than two dozen times. And each time, Cannon would only pick up speed and continue sprinting from the concrete to the shallow entrance, with a smile across his face a mile wide.

Does he not hear us? I don’t know.

Do his receptive language deficiencies inhibit the understanding of the words “do not” and “run”? Maybe.

Is he just bad? No.

Nonetheless, it was work. When Cannon would not walk on the slippery pool edge, Alex would get out with him, grab the buckle strap of his water wings, and force him to slow down all the while repeating the command: “walk, walk, walk.” Over and over and over. Cannon never seemed distressed, he never threw a fit about being held back. That sweet boy was having the time of his life at the pool, and we loved seeing the joy on his face. But when all around you other parents are warning their young children to slow down and walk, and those kids forcefully slow their steps even when everything in them wants to run, you see it – you see the autism. And you feel it. You feel the autism. And you wonder, will we ever get there? To that place when you tell your child to do something, and they just… do it?

*****

I saw an article a few weeks ago that a friend had shared, something about a new thing called ‘virtual autism’ and how too much screen time could be the cause of the rise in autism. Of course they still had to actually study it, but whoever the authors were felt confident enough in their guesses that it was worth sufficiently scaring parents everywhere about the iPad. I also recently heard that there is a new wave of thinking about autism – that it is perhaps the newest form of “evolution” in human history: since a very small percentage of autistic men and women also can be savants in certain categories, and since we need those highly articulate thinkers in an increasingly complex and technological world, natural selection is just one step ahead of medicine and is ‘creating’ them for us. And there is one of the latest P.E.T.A. campaigns, landing blame for autism squarely on the dairy industry and all the mothers who did exactly what they were told when transitioning their twelve-month old from the breast to whole milk.

And of course there are the less stretching potential causes: vaccines, a toxic environment, maternal age, too many medical interventions, genetics.

I don’t know.

Or an unnamed second trimester abnormality that causes essential cells in brain development to “lose their way” to their proper place.

Maybe.

I am not sure who or what to blame for autism. But I also don’t stay in the blame place, because it is crippling. The far more important question for us to ask is this: did God forget about Cannon and the millions of children and adults, some stumbling and some making their way alright in this world, with a brain that sees and takes it all in so very differently?

No.

*****

Our first red flag with Cannon was his speech. He was always quiet, and he has remained quiet. Our little guy never really developed words: once or twice he said “buh-buh” (bye-bye) and a rare “mom” or “dad” or “doo-doo” (thank you), but Cannon’s story is not one of normal verbal development and then regression. He did go through a few months where he stopped saying even the four or five sounds he did have, but the regression was minor compared to the level he had ever initially attained. He started speech therapy at nineteen months old (he hated it), we moved to the Early Intervention Services and added occupational therapy to his repertoire (he tolerated it) and by two years old we knew what we were looking at. He was rarely responding to his name. He wasn’t too interested in other people. He could not follow simple commands.

There are so many moments in those months that stick out in my mind. Like just before his second birthday when I had him on my hip at the refrigerator. I knew what he wanted, he had pulled me over to the door which was his clear indication for milk. So I picked him up and said, “Cannon, say please.” I knew he wouldn’t, or couldn’t, but I persisted. “Cannon, say p-p-p-please.” Silence. “CANNON, say p-p-p-lease!” He reached harder for the door, I forcefully grabbed his tiny hand and rubbed it on his chest to mimic the sign language. “SAY PLEASE!” He whined, I commanded louder. After a dozen requests, I started to cry. Why won’t he just say “PLEASE?” I put him down without the milk, thinking my hardline parenting would help force him to talk, but it only caused him to fall apart.

Is he even able to say ‘please’? I don’t know.

Will he ever talk? Maybe.

Can I just quit, because this is too hard? No.

It was all so painful, to say that A-word out loud and know it belongs to your child. It’s not anymore - but oh, it was back then. I was living on the brink of tears every single day.

*****

Autism falls under the broad category of Pervasive Development Disorders. This is how I very un-scientifically define it:

Pervasive – all over the place

Development – how things should grow

Disorder – something went wrong

Pretty simple: something went wrong with how Cannon should have been growing in several ways. If we think of the brain like a map, directing information, feelings, language and emotions to their correct places, I think of the autistic brain like a map with holes in it. The information may start where it is supposed to, but pretty quickly runs into a big hole and has no idea where to go next, so it either falls into the hole and disappears, or it takes a wrong turn and ends up in the wrong place. This is not science*, but it’s how my mind makes sense of it.

But here’s the thing: every single brain with autism has holes in different places. And every single brain with autism has holes of different sizes. And all this means that sometimes the holes are not at all in the way of where you're going, and other times they mean you cannot get there at all.

The map might have a hole where the information is actually supposed to start, so it never gets going. Like language: some kids have zero indication of autism in the language category – there are no holes there. Some kids have no words and not even any sounds, so there is very likely a large hole right where language was supposed to begin. They just can’t get going, no matter how hard they work. Or emotional attachment: some children cannot be touched without anxiety and others snuggle in and want their back rubbed with no issues at all.

Maybe the holes are in emotional regulation. Maybe they are in sensory processing. And maybe the holes are two steps in to the journey or maybe they are further down the road, allowing the child to start without any issues, but then running into a hard stop at an unpredictable moment. He used to talk quite a bit, why did he stop? We arrived at our friend’s house just fine, why did he fall apart once we walked through the door? And how big these holes are may indicate how long it takes to recover from getting lost or falling in. For some, it’s a fairly quick rebound. For others, the whole afternoon might be lost to a meltdown, or months of progress derailed.

So what do we do? Well, we do every single thing we can to fill the holes in the map, even though we don’t know how big or exactly where they all are. We watch. We listen. We make a hundred mistakes and try again. We commit to therapies and healthy diets and giving the brain and the body the best fuel we possibly can. And when our son simply cannot hear/understand/process what we mean when we yell “walk, please!” … we get out of the pool two dozen times and show him.

And do you want to know something? That night at the pool, just before we left, Cannon started to get out of the water one last time so he could run his short lap around again. But Alex kept at his persistent teaching, and yelled one more time, “Cannon, walk buddy.”

And finally, Cannon turned around to Alex, stopped in his tracks and said back to his daddy as if he was so proud of himself for finally getting it, “Good job!”

Yes, good job indeed, Cannon.

The holes can be made smaller, friends. And I also believe many – in some cases a lot of them – can be filled completely. And yes, it is a lot of work. Like Alex was honest enough to say out loud, everywhere we go, it’s work. Still, long gone are the days I stood at the refrigerator with a silent little boy on my hip. Cannon’s language is still very far behind and we still have to work hard to pull it out of him, but he can repeat and say virtually everything we ask him to. And more and more, he is putting meaning to those words his mouth can finally say. The road ahead is long, but when you look behind to see all the patches covering the holes and all the places he used to get lost that he’s not anymore, you look ahead and say “ok, let’s find the next one.”

*****

I don’t know. Maybe. No. Three phrases that have defined our journey with special needs more than any other. But while they may be the most used, they don’t carry the most weight. With every step of the journey, we remind ourselves of this:

God is sovereign. This, I know.

Is God working in all things – even disability – for one incredible purpose: to make His name and glory known? Absolutely.

Is He good? Yes.

*****

*I want to be sure I note that research and brain MRI’s do not show any visible “holes” in the brain of a person with autism. For the sake of both storytelling and understanding, that is an image made up entirely on my own. Like most metaphors, it both over-simplifies and falls short of capturing autism perfectly, but it has been a very helpful framework for us as parents to understand the work before us in loving and teaching our incredibly sweet boy.