I don’t know how autism works. How Jake can be so ‘high-functioning’ and someone else’s child can struggle just to talk. I don’t know how the violence that explodes in our home at times rates compared to other families. I don’t know how such a wide spectrum of symptoms and behaviours can all be related. I know that I have told people, hesitantly, that Jake has been diagnosed with autism, and heard them respond, “Well, he is so high-functioning.” Those words have brought me comfort, relief, and yet, always felt a little strange.
The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.
I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.
I know we are blessed. And I know that even though we are blessed, that Jake is so verbal, that we are all functioning alright most of the time, he is autistic. It is real. He struggles with the society around him. He struggles with the sensory input he receives. I can foresee him struggling with writing essays or abstract concepts that are hazy and hard to define.
He is my first and highest priority. I have to try to advocate for him the best way I can. He is going to grow up in this world, and meet people who are very much like him, who have no such diagnosis. He is going to meet people who speak using scripts, repeating familiar phrases that fit the situation. He is going to meet people who are completely non-verbal. And somehow he is going to try to fit himself into this situation.
I want to protect him from depression, from despair, from low-self esteem. That is more important than teaching him his letters, how to ride a bike, anything else at all. He needs to grow into himself, to know he is valuable, he is whole, in every way that truly matters, he is just like every other human.
It is comforting for me, for my parents, for those who deal with Jake often, to think of him as high-functioning. However, I am already struggling with this. There are days where we are not functioning very well at all, moments where I feel like everything slows right down and I am confronted with the reality of autism and the difficulties it presents. Then, there is the judgment that the label brings, that somehow my child is doing better, will be more successful, than your child with severe autism. And yet I have such high hopes for him! I imagine he will meet someone, get married and have a family. He most certainly will get a job and move out, living independently some day. Yet, there are many parents who feel like these are impossible dreams for their autistic children. How are we the same? Do we need a way to explain where on the autism spectrum our children fall?
Autism is one word, but there is no one autism.
Alas, for now that one word is all we have. So like it or not, we’re going to have to continue to figure out how to share this ill-fitting umbrella – this one name for all the myriad manifestations of this baffling disorder.
Some iterations desperately debilitating, some completely incapacitating, some mildly challenging, some no more than delightfully quirky – all with just one name.
We seek – no we demand! – tolerance, compassion, understanding. But how on God’s green earth can we expect those things from others when we cannot seem to show them to one another?
We’re in this together. And like it or not, that’s the only way we’re going to be able to move forward, get answers and make this world a better place for our children.
I know as the days get smoother, that we are in a good place right now. It is easy to forget, when Aiden and Jake spend not just moments but hours playing together, without major incident, that it was not always this way and it will not always be this way. It is easy to forget, as I go through the ritual of bathtime or bedtime, how many things we have tried, how many tears have fallen, and how hard these now basic routines used to be. Even school is going so well. I have to remind myself that before kindergarten started, even with no diagnosis, I spent about two weeks on just preparing Jake for the days that were to come.
Now on top of all that, we have more support, more information, more experts to talk to, more resources and tricks to pull out. We just received our package of therapy resources. I could never have imagined how quickly Jake would take to his visual schedule. That thing is super! So yes, we are functioning well, right now.
And the thought of school picture day coming up reminds me to prepare Jake. Knowing he still has not had a successful dental cleaning reminds me of how hard it can be. When I plan or imagine vacations, how Jake will handle it all is an important consideration in deciding where to go and what to do. Just having the three kids home for five days on my own while Jake was sick was a very in-my-face reminder of how challenging he can be. My days with only Penny and Aiden seem so simple by comparison.
Well, I’d say that as with most things, we attack the problem from both sides. We work on changing the language that reinforces the bifurcated [split in two groups] model of autism (not using it is a great way to start) and at the same time we educate the general public on why support and accommodation are vital across (around?) the spectrum. Changing language is a process. It’s not a quick fix…
People who are severely impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.
People who may appear to be more mildly impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.
The thing is, when we refer to someone as being high-functioning, we are saying that ‘other’ autistics aren’t as good. That one person’s diagnosis is somehow more valid than another’s. We are saying that autism is bad, and that thankfully, you don’t seem to be displaying very much of it. This is why I feel strange and uncomfortable with the term, even when it has brought me comfort to have it applied to my son. Because autism isn’t bad. I define autism. I define it as a neurological condition that brings struggles, requires compassion and support, and has nothing to do with the value of an individual.
I am going to stop using words to break autism’s vast spectrum into segments, I am going to stop using words that assign values where they have no place.