To the Mama Waiting on an Autism Diagnosis

Dear Mama,

I hear you’re waiting on a autism diagnosis. I’m not entirely sure where you are in this never ending process. You could just be starting to listen to that feeling deep in your gut, or maybe you’re trying some early intervention strategies, 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 are universal.

Nothing is certain right now. I know that uncertainty is 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 is probably leading you to rationalize everything you see. Well, she really only does that when she’s tired/is hungry/didn’t nap well/is teething. A lot of kids do that.

That last rationalization is probably 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. Your kid will only eat macaroni and cheese. See, it’s normal. You’ve seen other kids flap their hands like my daughter and they ended up fine? Phew. Your son didn’t speak in phrases until three and a half? Ok, we’ve still got time. This comparison game will 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 experience is just feeling flat out crazy. 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 your child acts the exact opposite of what you expect in just about every situation, just to make you feel extra crazy. You’re not crazy. 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 would just know the autism diagnosis was coming, no question. Then we’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, crazy. 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 really bad stuff.

Maybe you aren’t even sure it’s autism.  ADHD can present similarly, maybe that’s it. Axiety even?  Or 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. I’m sure you feel that way a lot of the time, God knows I did (and still do sometimes), 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 way to start to fix it. If a diagnosis can provide anything, it’s an exact plan tailored to your child to make your 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 that 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 destined before you even knew you were pregnant.

Lindsey Erickson Photography

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.  And also 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 won’t 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 start to make sense. The resistence you’ve felt will now have a name. You will know exactly what has been working against you all this time is and you will now have access to the proper tools to conquer this foe.  Or at the very least, learn to live beside it.

I know it’s scary and you never thought you’d be here. It’s okay that 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.


A mama on the other side

What do you think? Leave a comment!

  • Hi heather!
    I’m not sure what divine intervention rained down upon you to write this particular piece, but I can promise you that it was meant for me. Ds and I go Monday to the pediatric neurologist, and I really needed to read that. I know the high functioning diagnosis is headed our way, but your right that sometimes I feel the over bearing first time mother. I want to thank you from the bottom of my heart. While I’m sitting in the waiting room on Monday, I’m sure to be reading this again.

  • Oh, Jaclyn, thank you so much for your sweet words. They mean so much to me and I’m so glad they found you at the right time. This piece was written over many months because it took so long to put all these feelings into words. I’ll be thinking of you Monday and hoping for the best, but I truly think you’ve been through the hardest part. You’ve got this, mama!

  • I had no clue my son (3.5) would be diagnosed Autistic. It blew me away. I thought we would have gotten another diagnoses. I mean don’t get me wrong when they told me…it fit. But I wasn’t expecting it. We are awaiting an in depth autism evaluation which will label him high-functioning (because the “he’s just so normal” has been said one too many times). This wait has me a wreck and I’ve been reading article after article from autism parents. None have matched my feelings until yours. Thank you for sharing. Your thoughts sound like mine. And in this crazy parenting world…that’s what we need. A sense that we are not alone!!! THANK YOU!

  • I am waiting on a diagnosis for my daughter (one of two I have a strong feeling are on the spectrum). Your words brought so much relief and tears to my eyes. I can nor thank you enough for putting my thoughts and feelings into words I wouldn’t be able to articulate.