“Coming Out” of the Autism Closet

Last year on my birthday I made the very personal decision to “come out” about the presence of autism in our family. Up to that point we shared the information with our family and close friends. But we still kept the diagnosis pretty close to our hip. Everything was still so new to us. We were unsteady in our journey and trying to find our footing. There were still days that left us in tears filled with worry that we were getting it all wrong. Unsure how we would even be able to tell if we were “getting it right”. Improvements and changes were so hard for us to measure. Some days if felt “better”. But better than what? Other days is felt worse. Harder. Hopeless.

Keeping the circle small in the beginning is how we survived. I remember driving home from our diagnosis. We drove the first hour of the journey home from Iowa in complete silence. I took my phone out and began drafting the most difficult message I have ever sent. I confirmed the suspicion that had long been on all of our minds; my Grayson had Autism Spectrum Disorder. I said it then in those text messages and emails to family, friends and co-workers. I said it in writing because I could not say it in words. And over the next few weeks saying it out loud did not get any easier. At a certain point I called on my closest friends and family and asked them to share the news with anyone that needed to know. They loved me enough to do that for me. They loved me enough to know that I could not do that.

We went on like that for a while. I knew and they knew but we were not talking about it. They were waiting for a cue from me and I was way too weak to deliver that cue. We kept it close to us for so long that it began to feel like a dirty secret that we were hiding away; something to be embarrassed or ashamed of. And when I thought about it like that it made the diagnosis seem a lot scarier. I knew that I had to come to grips with Grayson’s diagnosis in a way that would allow us to move forward.

I slowly started to be more open about our autism. I started looking at the diagnosis as a part of our life instead of something that was taking over our life. Even though a lot of the time I felt like I was trying to convince myself of something that did not feel true. The more we talked about autism, the more it started to feel like something we could go up against. If people knew about our struggles then we would have that much more love and support behind as we travel down this path.

On my birthday last year I spent a lot of time thinking about how turning thirty-two really did not seem like anything special. Just another thirty-something year. Until one night when I sat back and realized what I survived in the year leading up to my birthday. When I started recalling my journey; leaving the year behind and welcoming thirty-two seemed like a significant reason to celebrate.

That year I learned a lot about myself. I learned that my ability to remain strong and focused was substantially greater than I previously imagined. I learned that my role as mom was the reason I was put on this earth. I was chosen to be Grayson’s mom, and Rowan’s mom. Motherhood always felt like a choice I had made. That year I learned that motherhood chose me. Being the mother to a child with autism chose me. And whoever chose me knew what I am now learning; I have the strength, persistence and tenacity to rise above any challenge laid at my feet.

I consulted my husband and told him that I thought it was time to make Grayson’s autism more widely known. Together we decided that I would make a Facebook post about Grayson’s diagnosis. The moment I hit “post” I felt the most tremendous weight lifted off of my shoulders. We were out. We were no longer embarrassed. No longer ashamed. We were going to start living our life out loud.

The reception to the news on Facebook was truly remarkable. I received words of love and encouragement from people from all different phases of my life. I reconnected with friends that I had not communicated with in over a decade. I found common ground and similarities with people sprinkled all throughout our lives.

The decision to come out tipped the power struggle between ourselves and autism in our favor. For the first time since we heard those fateful words; we were in control. It was unbelievably healing. I remember feeling lighter. Set free. I took the power into my own hands and I had no intentions of giving it back.

We went on like that for a while. I started to feel comfortable sharing things that showed up in my feed with reference to autism. Each time I shared something I felt a sense of pride and relief. And as we moved forward I knew that I had so much more to say. So much more to share.

Six months later I made the decision to start writing a blog about our journey along the autism spectrum. It happened almost accidentally. We were having a particularly challenging few weeks and I sat down to catch my breath and decided that day was the day I would start sharing our story. And, so I did. And, so I do.

People ask me all of the time about our decision to share our experiences in such a public way. I understand what they are saying. I am putting it out there in the only way that I know how; real and unapologetically authentic. I talk about things that are informative, things that are wonderful, and things that are really difficult to say. I share all of these things because they are all a part of the journey. Our journey.

I know that one day I will have to sit down in front of my son and find the words to explain to him that he has ASD. I know I will need to talk to him about my decision to share our story, his story, in such a public way. I know that those conversations will be difficult. But I also know that the child I raise will understand the importance of raising awareness through our experiences. He will understand that we are helping people. And, that we are helping ourselves. I will look into his beautiful brown eyes and I will make sure he knows how lucky I am to be his mom. I will tell him all of the amazing lessons he has taught me. And I will help him to understand how sharing those lessons is helping other people.

Autism is not a choice. The real choice is whether to embrace it or hide from it. I have done both. And, I can tell you with complete certainty that the choice to embrace the presence of autism in our life has changed us in so many wonderful ways. And I hope, even in some small way, that it is helping to change other people too.

JS

 

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