My son, Julian, was diagnosed with autism six months ago. Julian was born prematurely, spent six weeks in the NICU, and has been in therapy ever since. He is nonverbal and has a global developmental delay. Needless to say, we weren’t shocked when the doctor gave us the results of his autism testing.
When I first started researching Julian’s condition, Facebook immediately started sending every autism related advertisement to my newsfeed. There were shirts I could wear, shirts Julian could wear, puzzle bracelets, bumper stickers — the list goes on.
Honestly, I was bothered by the idea of telling complete strangers that my son has autism. I didn’t have a bumper sticker with my older son’s asthma diagnosis. I didn’t wear a bracelet displaying my own ADHD diagnosis. Why would I want to wear a shirt telling people Julian has autism?
As the weeks have gone by, and new situations have arisen, I’ve started telling more and more people about Julian’s diagnosis. I even started writing about my family’s experiences on this blog.
Some surprising things that happened when I started opening up:
1. I’ve learned so much more about autism.
At Julian’s ‘official’ diagnosis appointment, his doctor gave me a pamphlet, instructed me to find an ABA therapist, and sent me on my way. I felt overwhelmed, lost, and alone. So I joined a couple support groups online. As it turns out, ‘autism moms’ (and dads) are some of the best resources out there. Many of these parents have been at it for years, following the latest medical advancements and finding alternative therapies. And thankfully, they are more than willing to share their knowledge with newcomers like me.
2. I’ve found a new community.
When I first started researching the best therapies for Julian, I felt like I was on an island – I felt isolated. None of my friends had children with autism, so I thought I was going to have to take this particular journey alone. But the more I reached out, I found people who were traveling along similar paths. I even found myself offering help to people who are just starting to take the first steps with their child on the spectrum. The simple feeling of community has helped me tremendously.
3. I’ve met the most amazing people.
Once I started to tell my family’s story, other people began telling me their stories. I’ve talked with people who I ordinarily would have never met… and not just from the autism community. I’ve gotten to know families with children who have rare diseases and newly-discovered conditions. They’ve told me stories of heartache and strength- of sorrow and triumph. I am grateful for their testimonies and continue to be in awe of their courage.
Opening up about Julian’s condition wasn’t easy. But I’ve found great value in the connections I’ve made and the help I’ve been given. Maybe those puzzle bracelets and t-shirts aren’t just to spread awareness. They might just be a way to let others know they aren’t alone in their journey… a reminder that autism parents are everywhere, ready to help you whenever you decide to reach out.
What have been your experiences when you started opening up?