Why as Autism Parents, We should "Presume Competence"

This is a tough topic. It seems simple enough, but believe it or not, I struggle with this daily. It might be the phase we are in, as my kids are still so young (under 5), or just that the evaluations of all the things my kids can't do is still so fresh in my brain.

Autism is essentially diagnosed by all the things your kids are incapable of. Check marks of yes's or no's, and delay scores ranging from mild to severe. Both of my boys have landed every evaluation in "Severe Delay". As they will tell you, these are just umbrella scales, based on credentials mean't to fit all. Funny how that works, when Autism is a spectrum. But you have to be able to start somewhere, right?

The awareness of the evaluators to me is interesting; the tiptoeing around the term "severe" when its all over the paperwork. When you, the mom, are hearing these things, it is typically around the time you gained the title "Autism Mom". You aren't quite an expert yet, (if we ever are) but also the endless possibilities for your child, just recently came to a screeching halt.

The Black Hole

It is just what it sounds like, nothingness. At one time, you had a future you could see perfectly. School, graduation, college, dating, weddings, grandkids, family dinners etc. Now, there is nothingness. What the hell is nothingness?

This feels hard to explain to anyone else, but in truth, it all comes down to fear of hope. To hold hope, encompasses expectations. To have expectations, leaves room for disappointment and hurt. But as you come to learn, this entire journey will be all about selflessness and honestly, a lot of hurt. The things you will sacrifice about yourself to give them the world is endless. I am still fighting myself on the term "hope". I know all too well what hope can do, and I personally prefer to be a realist. At least, the old me did.

I hate to say it but, there is no "Reality" in early Autism folks.

Defining Reality: The state of things as they actually exist; rather than how they are imagined, believed, hoped for, or perceived.

Why there is no "Reality": Let's be clear, each neurotypical person can have their own version of reality. Yes this is true, they can also communicate what that reality is. Often times, Autism presents with communication delays and can sometimes land on non-verbal. Our kids, (sometimes until they are older, sometimes not) cannot communicate what they can or can't do. They see and experience the world entirely differently than most people understand. They learn in ways that aren't taught in textbooks, and on a schedule that no one can predict.

As a person who lived and operated in "reality", this state of thinking and functioning no longer suited us as a family.

I fight this daily:

He can't, we can't, what if, he will never, is this forever?

My kids are ages 5 and 3, both diagnosed Autistic, and are incapable of a lot right now. It is so easy to assume they will need a high level of support, forever.

But we don't know that.

The truth is that we know very little. That is a very hard pill to swallow as a parent. Especially as a mom, who has literally put her blood, body, and entire life into this.

We naturally think so far ahead, in our minds Autism could mean; they live with us forever, they might not ever have friends, they never learn to drive, they don't graduate from college, they won't ever hold a job, or ever find love and get married, we will never have grandchildren...the list is endless.

To be fair the current present has proven so far that they aren't welcome in daycare, or in regular classrooms, they can't play sports, or visit the parks, they aren't potty trained or even talking, they can't even tell us how their day was.

It is hard to imagine them being capable of many things but...

At only 5, Julian has Already Proven us Wrong... Many Times

When we thought he wasn't listening, he was.

When we thought he would never be affectionate, and then surprised us all.

When we thought he would reject his brother, then one day he didn't.

When we thought he would never utter a word, he now has many.

When we thought the gates and locks were Julian proof, and they never were.

When we thought, 'he can't climb that', and he did.

When we thought he would never sit in a class, but he is the star student.

When we thought he would never play among his peers, yet he was rewarded for sharing.

When we thought he would never eat other foods, but he now explores.

When we thought he might never say 'I love you', but we are lucky enough to hear it nightly.

It Makes us Wonder, why we ever Thought 'He Might Not'.

The Evaluations: The verbiage in these evaluations, unfortunately set a tone. Don't be deceived by the words 'severe' or a lot of 'no's on their chart. I like to think of these evals, as necessities to get support. But take their grading system with a grain of salt.

The Doctors: Oh the doctors you will endlessly see. They are taught to color inside the lines, and play within the boxes. Your kid however, will no doubt create their own lines, and boxes. You have to learn how your kid operates, and then learn which doctors are listening to you.

The Delayed Progress: We think we need to SEE progress for it to be happening. It sounds crazy, but in Autism, we don't! There are many months to years that you will SEE exactly zero progress, but that is no inclination that it isn't happening. It can show up, literally at any point. We have personally experienced this with Julian. Years later he was repeating phrases we used to say, understanding items used in previously trialed routines, and showing sporadic growth seemingly overnight.

So, How Do We "Presume Competence"?

It starts with the death of living solely in your reality. Oh the irony. Just like we will be asking the doctors & teachers & school directors to venture outside the lines, we too must venture!

You will need to find the parent in you, that saw the endless possibilities. Get reacquainted with her. She was never wrong. That door only closed because of your fear mom. My fear. I was holding my kids back in my mind, because of my own fear. Fear of what wouldn't be. Fear of hope for what could. Fear of failure. This gets projected through your parenting and on to the kids that don't see their 'can't dos'. They are looking to you, whether you realize it or not, to show them just what they 'CAN do'!

I have been, and still are, working on this as we speak! This is something I have to avidly think about before I make decisions. It is NOT EASY. And as much as I hate to talk about it, I do think it is one of my shortfalls as a parent. My kids deserve to know they can conquer the world. The only person that can tell them this is true, is me!

We shouldn't reduce assumed capabilities to only what is visible.

Sometimes I truly don't know who is the teacher and who is the student here. I am learning so much from my children. Their existence alone has changed me, but the difference in how they experience the world has morphed me into something entirely else.

Don't let the world tell you what your kids can't do. Let your kids lead you. They will show you in time just what they are capable of. I know this isn't an easy task for special needs parents, I live it daily. Having a positive, hopeful outlook can feel dangerous. But even if their future comes with limitations, you will never have been what stood in their way.

This is an important lesson I have come to learn. Along with many others. I see you moms, doing your absolute best out there! Remember they look to you for courage and confidence.

We are truly giving it our all, even while dizzy and disoriented from Orbiting Autism.