To the Mama Waiting on an Autism Diagnosis


Dear Mama,

I hear you’re waiting on a diagnosis. I’m not entirely sure where you are in what can feel like a never ending process. You could just be starting to listen to that feeling deep in your gut, maybe you’re trying some early intervention stuff or maybe your child’s evaluation is tomorrow. It really doesn’t matter (or what the diagnosis will be, really), because no matter what, the feelings seem to be universal.

Nothing seems certain right now. I know uncertainty might be eating you alive, causing you to dissect every move your child makes. Trying to mentally tally how many times you’ve seen “that” behavior, or haven’t seen “that” behavior, as the case may be. This might be leading you to rationalize everything you see. Well, she really only does that when she’s tired or hungry. A lot of kids do that.

That last rationalization might be the most common one you make because although you know you shouldn’t, you can’t help but compare any other child within a few months of your own. Oh, your kid has a meltdown every time they get in their car seat? Good, I’m not alone. You’re kid will only eat macaroni and cheese? See, it’s normal. You’ve seen other kids flap their hands like my daughter and they were fine? Phew. This comparison game can give you fleeting reassurance. But what you’re missing is that your child is more than isolated incidents and behaviors. They are a sum of parts, and while these little gems might tide you over for a few days at a time, they aren’t representative of the bigger picture of who your child is.

If I had to guess, the most common feeling you might experience is feeling flat out irrational. Do friends and family think nothing is wrong and that you’re a panicked, overbearing first-time mom (or maybe even a too tired veteran mom)? That you are too rigid, too protective? That if you would just relax everything will be fine? I bet you’re child acts the exact opposite of what you expect in just about every situation, just to make you feel extra irrational. You’re not irrational. You know your child better than anyone else and no one else’s opinion really matters because you know what you see and experience each day.

The most challenging thing for me was the inconsistency of it all. I never knew what version of my daughter I was going to get. One day would be rough and I knew the autism diagnosis was coming, no question. Then she’d have a really, really good day. Maybe even a few strung together, several weeks even and it would be enough to doubt myself and fuel the fire that I was, in fact, irrational. But then, there would be a rough patch that would solidify that yes, I am right to pursue this diagnosis.

If you’re not sure if you’re having rough patches, I suggest keeping a diary of the days. Nothing extensive, maybe just a sentence or two about how the day went. I think you’d be surprised at what you look back on. We mamas have a way of forgetting the challenging stuff.

Maybe you aren’t even sure it’s autism. ADHD can present similarly, maybe that’s it. Maybe you think you just have a really challenging kid and you’re just not cut out to be a parent. I really hope you don’t think that, because I promise you that’s not true. Perhaps you feel that way a lot of the time, God knows I did, but that is just not the case. Parenting is hard, but it’s definitely not supposed to be this hard. It will get easier once you hone in on what exactly you are dealing with and figure out a plan. If a diagnosis can provide anything, it’s an exact plan tailored to your child to make life easier.

Here’s my best advice to you: listen to your gut.

You were given this child for a reason. I don’t know what that reason is just yet, but that’s what I keep hearing and it gives me a lot of faith to believe that. Keep pushing to get help. You do not have to feel helpless. There are so many people out there who can be an invaluable resource to you and your family, but chances are you’re going to need that label to access them.

What’s done is done. There is not a drop of guilt to be had because there is nothing you could have done differently to change this course. Odds are, it was already plotted before you even knew you were pregnant.

An autism diagnosis will change everything and it will change nothing. Everything will change because you will be granted access to so many resources that will be so welcomed. Nothing will change because, if I had to guess, deep in your heart you already know exactly which way the diagnosis will go. You are at the hardest point right now: the uncertainty, the waiting, the helplessness, the inadequacy.

These feelings might not change after the diagnosis is delivered. You will simply be feeling them with a different perspective — an autism mama perspective. You will get the final clue to crack the code of who your child is and everything will make sense.

I know it might be scary and  perhaps you never thought you’d be here and you don’t know what you’re doing, but you will be just fine and your child will be just fine because you’ve already been through the hardest part.

Love,

A mama on the other side.

A version of this post appeared on The Okayest Moms.

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Thinkstock image by Kerkez

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