During the years surrounding my son’s autism diagnosis, I could barely say the word “autism” out loud. I thought I would just break down every single time and, frankly, I didn’t have time for that. To be clear, this had nothing to do with shame. Not one day has gone by that I am not immensely proud of this boy.
It was about fear, worry, the unknown, and all the other bumps along the road to acceptance. All a parent could ever want is for their child to be okay. Autism has a way of tricking your brain into questioning if that will be the case. There is so much to learn and understand before some of that uncontrollable worry begins to fade.
I threw myself into research. We got on waitlists. I began on the path to truly knowing this boy.
And I wrote. I got it all out. Everything that was too hard to talk about at the time. Processing this kind of information is not easy, and it can be very lonely. This is a big reason why I am here, sharing our story. I never want other families to feel the same confusion and loneliness that we felt in the beginning of this journey.
It has meant so much to me to connect with other autism families, some who are going through the steps to a diagnosis or have a child that was recently diagnosed, and other parents of children of all different ages and abilities.
The main message I want to convey to all these parents is that there will be MANY times that you will feel alone in this, but you do not have to be. I constantly must remind myself of this.
I cannot tell you how many situations there have been where my knee-jerk reaction was that no one knows how this feels. The same battles, day in and day out, the medical incident reports, medical and educational decisions, the moment I saw AUTISM written on paper in an evaluation about my boy.
Remember this: there are others who have been there, too.
Things can still be hard for me to process a lot of the time. Sometimes it seems easier to sit alone with the tough stuff. If you do this, please don’t stay there long. Let someone sit with you.
Find your own way to work through your thoughts and feelings. They are real and should not be ignored.
Talk to someone. You might find this safe person in a waiting room at therapy or the pediatricians office, on the playground, or online. If all of this sounds impossible and overwhelming because you can’t even say “autism” out loud yet, that is okay too! It will get easier to talk about and then you will be ready to lean on others.
The best way for your friends and family to learn about autism and support you as a parent raising a child with autism is to tell them. Tell them about your child. Tell them about your struggles, your child’s struggles, strengths, passions, victories, and all the things.
They might not understand exactly how you feel, but they don’t have to. Sometimes talking through things just leaves you feeling better. I promise your people want to support you and celebrate with you and your child, you just have to let them.
I’m not saying you have to wave your autism awareness flag as loudly as I do. We all do this life differently. Find a place that makes you feel supported.
I am so much stronger than the day I walked out of that psychiatrist’s office with my son’s diagnosis in hand. My whole family is. If you would have told me this back then, I may have not believed you.
My boy is always growing and evolving and most days it feels like autism is always one step ahead of me. It’s like trying to catch and examine the wind. There is still so much unknown to wrestle with.
While I may never understand everything going on inside of this complicated boy, what I do know is that I will never stop trying, and there are so many people here rooting for him.
Originally posted in November 2020.