Our First Year With an Autism Diagnosis

It’s only been a year. A year with therapy, meetings, tears, laughter, meltdowns and milestones. A year with an autism diagnosis. December 3, 2014 was a day our family changed; it was hard to conceptualize the enormity of how we were going to change in the 365 days to come. December 3, 2014 was a day that plays over and over in my head.

It started with Dr. B walking into our home and watching our 2-and-a-half-year-old run around from toy to toy, with a big smile on his face. He is a happy little guy. He smiles big, and his hugs can melt your heart over and over again. However it took her 45 short minutes of interacting with him to then just simply say…

“I feel comfortable diagnosing him on the spectrum.”

My stomach dropped; I looked at my husband, and he looked at me, but we quickly new better than to look at each other for too long because I saw it in his face that we were both going to breakdown.

I responded back with “OK.”

With that she smiled, and said, “Wow, you must have known because you don’t seem surprised.” I was shocked by that comment.

What’s a “normal” reaction to an autism diagnosis? I calmly responded with, “Well I don’t know you, and I can assure you I will cry the moment you walk out this door.” She talked a bit more, and I didn’t listen; I just wanted her out of my home. She was so calm and almost insulted by my non-reaction. Did she want me to cry and breakdown? She left. I cried.

My husband and I didn’t talk much that day. We met my family at our annual Christmas walk and dinner and took lovely photos, ate great food and had one too many glasses of wine. We didn’t tell anyone but my mom. I begged her not to tell my dad or anyone else. My husband and I needed time to really grasp the magnitude that was his diagnosis. We didn’t understand it, nor did I understand how to casually drop it into a conversation at the park with my mommy friends or on a playdate. What was I expecting from their reaction? Did I want one or not? Would they judge him? Would they judge me? So much anxiety would flood me when thinking about it to myself; I did not have it in me to talk about it with others.

After a few months we slowly started telling people. Telling my brother was hard, telling my best friend of more than 25 years was nerve-wracking. Watching my husband struggle to even say the word “autism” has been and still is extremely heartbreaking. I ended up writing a letter to my sister-in-law, and my husband called his parents after five long months of saying, “I will call them tomorrow.” The anxiety around autism conversations last year was constant and always on our minds.

It was an awkward first year. We didn’t know how to say it, we didn’t know how to act about it. I finally wrote a long and detailed email and sent it to grandparents, aunts, uncles, cousins and friends. It was exactly what I needed to say without everyone watching my eyes fill with tears and my voice become shaky. It took us nine long months to actually tell “our tribe.” We heard many different comments like, “The longer you hide it, the bigger of a deal it makes it,” and “Just tell people,” or “I wouldn’t tell anyone either,” “He’s so young, how do you really know?”

We were confused this year. We were dipping our toes into the shallow end, and thankfully we now feel comfortable to dive right in and tell anyone (when appropriate). It’s nice to be able to talk about autism and spread advocacy when I can.

 

I woke up this year on December 3, 2015 to Milo yelling in my ear, “Mom, please can I watch movie?” My first reaction was to say, “No, go back to bed!” It was still dark out. Then it hit me — a year ago we were struggling to communicate with him. He had very limited verbal communication, about nine words. A few months earlier his speech evaluation graded his age equivalency at only 9 months old. A year later — 365 days later — he is talking in full sentences, something I wasn’t sure he would ever do.

The amount of support he has gotten through his early diagnosis has truly been life-changing. Yes, one year ago I was angry at his diagnosis and that lady who so calmly walked into my house and told me he is on the autism spectrum. Today I have come to see it as the most crucial and beneficial day for my son and for our family. Without the 20-plus people working with my son, he wouldn’t be where he is today, and our family wouldn’t be the same. My husband and I have come to understand and love all the amazing people who have come into our lives because of his diagnosis. Most important, this year, we survived, thrived and are embracing our journey.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.