Today, your child was diagnosed with autism.
Maybe it came out of the blue.
Maybe you already knew.
Maybe you fought for a diagnosis.
But today was the day it became official. It may have come with a “level”, or maybe the doctor didn’t feel it was necessary to share that with you today, so you’ll wait a month for the official report. But today, the news is sinking in and you are shaken. Autism has entered your life, and it’s here to stay.
What does this mean for your child? For you? For your family? For your finances? What do you need to do? How do you help support your child? Who can guide you? Why isn’t there a flowchart (or is that just me)?
Your mind is racing and you just need someone – anyone – to tell you what to do. The only response to alleviate the anxiety is action.
I have been here three times. I’ve experienced the gamut of emotions.
Here’s what to do:
Enjoy your child exactly as they are. Your child is still exactly the same adorable, brilliant, lovable child that they were before diagnosis. Never lose sight of that.
As a parent, you’ve always done everything you can to protect your child, and that doesn’t end with an autism diagnosis. Protect your child’s privacy and bodily autonomy. Learn how to speak about support needs in a way that will not be hurtful to your child, should they overhear you.
Get comfortable with being uncomfortable.
Learn about autism from a variety of perspectives, including professional, parent, and especially #ActuallyAutistic perspectives.
Read blogs, watch vlogs, sign up for Google alerts, borrow every book about autism in the library (I did), join Facebook groups (there are some fantastic groups out there that are led by autistic people).
Ask questions. Make sure you ask autistic people, not just doctors or other parents.
If you want to understand your child, learn about how they experience and perceive the world. Learn about how your child learns (bottom up vs. top down).
Before committing to any therapy or treatment, read about the history and perspectives of the practitioner and autistic people.
Soak in all of the information you can find. Examine what seems accurate or inaccurate for your child. Mull it over, sit with it, place yourself in your child’s shoes. Maybe even get an autism evaluation yourself if you find yourself in what you’re learning (it is incredibly common for adults to learn that they are autistic after their child is identified).
Dedicate the first year after diagnosis to learning, without committing to anything other than improving your child’s safety and quality of life. This is your learning time. You’ve heard of honeymoons and babymoons? I propose an #AutismMoon.
Think about swimming lessons and water safety because autistic children have a higher risk of drowning.
Consider how you’ll support your child’s self-preservation skills—including their bodily autonomy, and teaching boundaries and consent—because autistic children have a higher risk of abuse.
You can’t support an autistic person if you don’t know anything about autism. Well, you can, but you’ll flub it up, and it’ll stress everyone out. So go easy on yourself and go easy on your child. Autism is not an emergency!
Autism is a neurodevelopmental disability. A neurological classification if you will. It’s not a disease or an illness. There is no expiration date on the diagnosis. Your child is not going to be more or less autistic based on whether or not they started a specific therapy at a certain age. Don’t allow a profitable industry to push you into an action that you have not researched thoroughly. If the autistic community says something is harmful, listen and research. If the autistic community says something is helpful, listen and research.
Your child is going to be okay, and it will be because of your love and willingness to advocate for their best interests.
So, take another big breath. You are not alone. Your child is not alone. There’s a community waiting to welcome you both.