“Absolutely, I’m going to diagnose her with autism,” the doctor stated. “She’ll enjoy attending a barbecue, but she won’t be able to host one.” That was the explanation I received regarding my daughter’s diagnosis.
What? She’s only two! What if she doesn’t even like barbecues? Perhaps the doctor didn’t think I needed more constructive information, or maybe they were attempting to relate it to my experiences. Regardless, all I absorbed was a list of arbitrary limitations my child would supposedly face throughout her life. (By the way, she loves barbecues!)
As I walked my delightful little girl out of the developmental pediatrician’s office, we strolled hand in hand toward the car. She joyfully noticed every sight, sound, and sensation while skipping through the parking lot, her hair dancing in the breeze. Meanwhile, I was engulfed in a whirlwind of questions, heaviness, and uncertainty—far from sharing in her excitement as we headed home to our safe haven.
What am I supposed to do now?
I had anticipated this moment. I’d recognized differences in her behavior that sent me spiraling down a Google rabbit hole of despair. (Be cautious where you end up on a Google binge in the early hours when hyperfocused and dealing with undiagnosed ADHD.) But now, as I left the doctor’s office, it was no longer theoretical—it was reality.
I understand. It’s frightening to receive that dreaded diagnosis for your precious child. But do you realize why this diagnosis can be particularly daunting? Because that’s the narrative that captures attention. Fear is a powerful motivator in today’s society. The truth is, we often fear what we do not comprehend. If you’re new to the world of autism, I have some fantastic news for you: Your child will be just fine, and so will you.
This is the list I desperately needed that day—a guide to transform the swirling confusion in my mind into actionable, reasonable, and fear-free steps. It’s a list from someone who has been in your shoes.
1. Breathe.
I know it sounds cliché, but listen. The first impulse is often to rush into every possible therapy. Pause for a moment. Take a deep breath. Visit the park. Enjoy your child, the little one you cherish more than anything else. Spend quality time together, however that looks for your family. It’s beneficial for both of you. Start with love.
2. Your child is still the same.
Nothing has changed about your child. The moment before the diagnosis and the moment after it are identical. The only difference is the insight you now possess—your child’s brain operates differently. And you’ll soon learn about supports and strategies that can help them thrive. This is merely the beginning!
3. Listen to autistic voices.
This has been the most impactful step I took post-diagnosis. I must admit, it was something I had never considered. Autistic adults? I had thought autism was something that primarily affected children, particularly boys. But guess what? Autistic kids grow up to become autistic adults. Shocking, right? Many of them share their insights and experiences to aid autistic children, parents, educators, and loved ones. When engaging in these spaces, remember to listen and learn first. Your autistic child’s needs should come first.
4. Research your options.
You’ll likely receive recommendations for a full schedule of therapies for your child. But don’t feel pressured to accept this as your only choice. Look at your child—the one you would do anything to support—and do your research. Listen to the experiences of autistic individuals regarding those therapies before committing. They are not magic solutions to “fix” your child.
5. Your child is not broken.
Make sure they know this. Ensure you believe it too. Living with the belief that you’re fundamentally flawed is painful. Society often tells us that many aspects of our identity are wrong; create a loving home where your child can feel fully accepted.
6. Build your support network.
Be intentional about assembling your support system. The people you surround yourself with will influence how you feel and interact with your child. If you find yourself in a Facebook group filled with negativity, it may not be the best environment. Seek out those who support your child and provide you with knowledge and understanding.
7. Dance in the rain.
The overwhelming amount of information about autism can make you feel like you’re drowning. Flip that metaphor around—point the hose to the sky and dance in the droplets! You will start to comprehend this new world and culture. Take it step by step, ask questions, and remember that it’s okay to make mistakes. When you know better, you do better.
8. Understand the spectrum.
Many people will ask, “Where does your child fall on the spectrum?” The perception of a linear spectrum is misleading. Read this insightful comic by autistic artist Rebecca Burgess to grasp what the spectrum truly encompasses.
9. Embrace your child’s identity.
You’ll notice I’ve been using “autistic” rather than “has autism.” This is known as identity-first language. Many in the autistic community prefer this terminology. As a non-autistic parent, it’s my responsibility to honor the preferences of those with lived experiences similar to my daughter’s.
10. Adjust to your new normal.
It’s perfectly fine to do things differently than other families. Letting go of expectations can be liberating. One of the most impactful changes I made for my mental health was to stop comparing our journey with others. Timelines and milestones are arbitrary; your family is valuable and worthy just as you are. Allow your child to lead the way and enjoy the journey together.
This article was originally published on November 5, 2021.
For more insights, check out this related blog post, and for comprehensive information, visit this excellent resource on pregnancy and home insemination.
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- What is autism?
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In summary, navigating your child’s autism diagnosis can feel overwhelming, but it is important to take a step back and breathe. Embrace the journey and engage with the autistic community to gain insights and support. Your child is unique and wonderful just as they are.