Dear Mom of a Newly Diagnosed Autistic Child

Hi. You don’t know me but I have been you.

One day I was given news that would change my life forever about my son. (Actually, I was given this news twice…both of my sons are Autistic.) I know the weight you are feeling right now.

I know the questions rolling around in your head. Will they always be this way? Are they broken? Did a vaccine cause this? Is it because I am a bad mom and didn’t give them what they needed? Is it because they were a preemie? (Or any other birth issue.) Did I not read to them enough? Will they always need my assistance? Will they have to live with me forever? Will society ever accept them? What do I do next?

The first thing I wish I could do is hug you. I wish I could sit with you over coffee or tea and let you vent it all. Get it all out. Regardless of what anyone says, this is your experience too. So you may find yourself working through the grief cycle as you figure out what this all means for you and your child. Don’t let anyone make you feel guilty for this process. I believe there is a grief cycle for releasing all the hopes and dreams and expectations and plans we make for our children before a diagnosis. There is no right or wrong…unless you refuse to deal with all your feelings around this. That’s my first tip: Feel your feels. You cannot move forward in a healthy way until you go through this process. Otherwise you’ll get stuck and you’ll find yourself triggering about any and everything Autism related. It means you haven’t actually made peace with the diagnosis yet. And until you make sense of it all, you’ll keep floundering and you’ll hurt the people that actually want to help you.

The next thing I would tell you to do is NOT join all the Autism Moms groups online. Don’t do it. While they are all well-meaning, you’re going to hear a lot of things that will make you feel like you need to “fix your broken child”. I’m going to ask you to pause before you start jumping into that narrative. You’ll want support. You’ll want someone that understands. But the first people you interact with about Autism will inevitably shape what you believe about Autism and your child and I caution you strongly about that.

Instead, take some time to look at your child. Really look at them. See them. See their beautiful gifts and remember who they were and how you saw them BEFORE they got a diagnosis. Do you remember all the wonderful things you loved about your child before a psychologist/psychiatrist/etc deemed them “different”? Focus on that. Hard. And start to remind yourself that different doesn’t mean broken. Your child is not broken. They are just wired differently Mama. But deep down, I think you already know this. You just need permission to believe it’s true. Here’s me giving you permission to love your child as they are and to celebrate all the things about them that make them who they are!

Next, may I make a bold request? Can I ask you to start joining groups of Autistic people instead? (Yes, they will let you in.) Who better to teach you about your child and give you all the tips and tricks you will need to raise your Autistic child than someone who is already walking and living and breathing it?! You can ask an Autism mom how to help your child learn how to clean their toys and they might give you some colorful charts or behavior sticker charts and while those are all well and good, wouldn’t you rather have an Autistic person tell you that the secret to getting your Autistic child to clean might be to help them break it all down into smaller piles so that the task isn’t so overwhelming and that the sorting process might actually help calm them WHILE they are cleaning? Go to the source, Mama. Hear the way these folks live. Listen to how they feel. See how successful they are! Watch how proud they are of themselves and how happy they are to be Autistic. (Not all, of course. But many!) Many of these folks have had to learn how to live this way without a diagnosis. Without supports. Without help. And they have done a beautiful job. Imagine how much better off your child will be when you begin to introduce supports and tools that will help them live their best life!!!!

Once you have seen this side of Autism, then you can feel free to join some Autism moms groups. You’ll want/need support as you begin to live this all out. These Mamas love their kiddos. Hard. And they are relentless in their pursuit to help their kiddos. It’s super inspiring! And many have some great tips and tricks to help calm meltdowns or ease sensory issues. These are very valuable! Essential oils, quality supplements, lots of water, a good sensory diet…all these things are great tools to help your child live their best life. Autism is not a one-size-fits-all thing…and neither will the solutions be. So try things and see what works for you guys! Don’t be discouraged if something doesn’t work. You’ll find what does. Give it time. But remember, the goal of these tools is not to “get rid of the Autism”, it’s to help your child be the best version of themselves they can possibly be! (And please, please don’t ever buy the lie that you can give your kid bleach and it will get rid of Autism. Please.)

You will have your heart broken into a thousand pieces on this journey. But you will also experience joy like you have never known before. You will marvel as you watch your kiddo soar and conquer things nobody knew they could conquer. You will endure exhausting assessments, long therapies, and meltdowns galore. But you’ll also see and feel the pride they feel as they finally master something they’ve been working on. It’s a beautiful journey Mama. Look for the beauty and celebrate the good each day! My hubby and I always say that no matter how hard a day is, if we had at LEAST one good moment, it was a good day. And then there’s always tomorrow! End your day with connection with your child and you will all feel better.

One last thing I want to touch on before I end this letter…

Don’t be surprised if, as you’re doing your research, you begin to see a picture of yourself emerging. You might begin to recognize yourself in the stories of these Autistic folks. You might even wonder if you’re Autistic as well. This is not weird. This is not you trying to take the spotlight from your child. Open your heart to this and just keep paying attention. If you see yourself strongly in what you’re seeing and hearing, there’s no shame in asking for an evaluation of your own. I’ll share more about this another time, but I wanted to prepare you in the event that this does happen to you. (And you would not be the first. It happens to MANY people.) Autism is often genetic. It can skip generations or it can follow right along through parent and child. I’m not saying this WILL happen. I’m just saying not to be afraid if it does. It’s quite common. (And life-altering in the best way! You can read my story here if you find yourself in this position!)

If you feel alone right now, please send me an email. Let’s talk it through. Let’s process together. I’m happy to encourage you as you begin this journey! My first son’s diagnosis was really hard. But my second son’s diagnosis? We went out to dinner after to celebrate his amazing design! 😍 I wish I could have had this same reaction with my first son, but it is a journey. This is our journey. And now this is yours. You get to decide what this all looks like for you. I’m here to help!

Blessings to you.

~Nikki