“Yeah, I’m going to give her an autism diagnosis,” she said.
“She’ll be able to go to a BBQ, but she’ll never be able to host one.”
That’s how my daughter’s diagnosis was explained to me by a medical professional.
What? She’s two! What if she doesn’t even like BBQ? Maybe they didn’t think I had the capacity for more helpful information, or perhaps they were trying to relate it to my life. But all I heard is what predetermined arbitrary things my child supposedly wouldn’t be able to do for the rest.of.our.lives. (P.S. she loves BBQs)
I walked my precious newly two-year-old out of the developmental pediatrician’s office. Hand in hand we walked to the car. Her, noticing every sight, sound, and sense as she excitedly hopped through the parking lot with the wind in her wispy hair. Me, overwhelmed with questions, heaviness, and uncertainty, not sharing in any of her joy as we got in the car to head home to our safe space.
WTF am I going to do now?
I knew it was coming. I had noticed differences in her that caused me to run down the Google rabbit hole of despair. (Be careful where you end up on a Google binge in the wee hours of the morning when you are hyperfixating and have undiagnosed ADHD.)
But now, leaving the doctor’s office, it was no longer hypothetical – it was real.
I get it. It’s scary. Your sweet little child with the dreaded diagnosis. But do you know why this particular diagnosis is so scary? Because that is the narrative that sells. You can see it in so many aspects of our society. Fear is a great motivator. But guess what, like so many things in life, we fear what we don’t understand. And if you are new to Autismland, I have some really good news for you.
Your kid will be ok, and so will you.
This is the list I needed that day. A list to take the swirling confusion in my head, and turn it into actionable, reasonable, non-fear inducing steps. A list from someone who has been right where you are.
Breathe. This sounds cliche. But hear me out. The first thing you are told to do is to start every. therapy. known to man. (and woman). Take a beat. Take a breath. Go to the park. Go enjoy your kiddo. That child that you love more than life itself? Go love on them, however that looks for your family. It’s good for you, it’s good for them. Start here, with love. (Then read this from Autistic,Typing.)
Your kid is still the same kid as yesterday. Nothing has changed. The moment before and the moment after diagnosis are the exact same. The only thing that is different is knowledge. Your new knowledge that your child’s brain works differently. And that there are supports and strategies that YOU will be able to learn to help them thrive. This is just the start! There is so much to learn about your kid, and yourself! Buckle up.
Seek out autistic voices. This is by far the most impactful thing I have done since my child’s diagnosis. I am embarrassed to say that it is something I had never thought about. Autistic adults. I thought it was something that only affected kids, and mainly boys. Who were these autistic adults? Turns out autistic kids grow up to be autistic adults. Shocking, right? And many of them are sharing their knowledge and lived experiences to help autistic kids, and their parents, educators, and loved ones. But make note of the order of what you just read: To help autistic kids is first. When you go into these spaces, it is your turn to listen and learn. Their first priority will always be your autistic child. Not your feelings or your secondary experience. Be ready to learn, unlearn and grow. It is humbling, and it is so worth it.
Research your options. You will probably be recommended a full-time load of therapy for your child. And presented with what looks like your only option. Look at that kid again, the one that you would give anything in your power to help, and do your research. Listen to autistic people who have personally experienced those therapies before you go all-in with any therapies that promise your child will look and act “normal”. They are not a magic bullet to fix your child. Do you know why? Because of #5.
Your kid is not broken. Make sure they know that. Make sure you believe that. Imagine living your whole life thinking you are fundamentally broken because the people closest to you, those you love, tell you so with their choices, words, and actions. Maybe this was you as a child. It hurts. You are not broken either. Society already tells us that so much of who we are is wrong, make your home a safe space to be fully loved and accepted for who they are. Learn about neurodiversity and how it reduces stigma around variations in our brains.
Build your support team. Be thoughtful in how you approach this, the support you build around yourself will influence how you think, feel, speak about and ultimately interact with your child. Did you join a facebook group that seems to be full of parent complaints and commiseration of how tough everything is? Not the best place to be. Is an educator on your team constantly talking about what your child can’t do? Therapy concentrating on changing your child to fit in with societal norms? Does it not sit right deep in your gut? Add people to your team that support your child first, and also you through knowledge, strategies, and understanding.
Turn on the hose, and dance in the rain. You’ve heard the term drinking from a firehose when you are learning about the vastness of something new? The amount of information and misinformation about autism can make you feel like you are drowning. Take that hose, point it to the sky, and dance in the raindrops. You will begin to understand this, you will see patterns, you will start to make sense of this world and culture (pssst. autistic people have a culture, you should google it and follow it around for a bit.) Take it a little at a time, ask questions, it’s ok when we get it wrong, when we know better, we do better. Learn all you can. Here are 100+ books about autism and neurodiversity that have been created by and vetted by autistic people.
What is the spectrum? It may be different than you expected. I’ve had so many people ask me “where is your child on the spectrum?” You imagine a line from just a little autistic to very autistic. Read through this super easy-to-understand comic by autistic artist Rebecca Burgess to get an idea of what the spectrum really is like for autistic people.
Embrace your child’s identity. You may have noticed I have been saying autistic vs. has autism. This is what is called identity-first (autistic) vs. person first (has autism) language. There are generally strong feelings on both sides of this discussion. When you break it down, any group of people should be able to self-identify as they choose. The majority of the autistic community prefers autistic to has autism. You can read multiple in-depth articles on their reasoning why here. As a non-autistic parent of an autistic child, my responsibility is to listen to those who have the same lived experience as my daughter, one that I don’t have. And at some point, she will decide for herself how she would like to identify and I will honor her choice.
Adjust to your New Normal – Doing things differently than other families is ok. It is actually a beautiful and relieving feeling to release expectations. One of the most impactful things I did for my own personal mental health is to stop comparing. Stop measuring myself, my family, my child against benchmarks or milestones that do not take us into account. These are arbitrary timelines, and you don’t have to hit them in a certain time frame, or at all, to be worthy. To be valued. To be loved. Go your own way, on your own time. Let your child lead. It is ok. Let it go. Enjoy the journey. Your child is enough, just as they are.