Autism was not on our radar. We don’t have any other family members diagnosed with Autism. It blindsided us like a Mack Truck. Dad and I were parents to a five year old boy who developed typically, not a blip on the radar. We honestly never even considered the possibility that we might be bringing a second son and younger brother who could have anything at all special to attend to into this world. Fools. I hope to reflect on this “wait. what?. why me?!” moment at a different time. Here I just want to share our diagnosis story. We became an Autism family the day we received that diagnosis. I know this with certainty. Driving home from the doctors office that day- the world was different. On that one drive, I spotted a vanity license plate, a billboard, and a puzzle piece flag waving out of an RV. I recognized myself in them.

I’ll attach our diagnosis story to the main menu for folks to refer to when they wonder on to this site.

Choosing where to start a diagnosis story is never easy. I try to start from the beginning, but when exactly was that? When Gooli was born, when he was conceived, when I was conceived, when my mother was conceived? I’ll limit the pre-story to- Gooli was conceived naturally and uneventfully, he was a typical and easy pregnancy, he was a typical and uneventful birth. He was a natural delivery with minimal intervention (no pain medicine, C-section, induction, etc.).

Gooli was typical and uneventful (as far as we could tell, at least) for the first months. He was responsive, emotive, etc. He spoke his first word at 7 months. Not “mama”, but “papa”. At that time, Dad was home with the kids full time. I returned to work full time when Gooli was 6 months old. He met all developmental milestones and was developing some language- mostly nouns “cheese, dog, car, etc.”. This began to shift when he was about 18 months old. The first change we noticed was that he started to “forget” (regress) words. He could ask for cheese one week, and then could only grunt and gesture with a closed fist the next. He then began to run back and forth down our long hallway, slamming into a sliding glass door at the end. He LOVED this game. It was very cute. THEN, he slowly stopped responding to his name (particularly when I called him), his eye contact became less frequent, and he started “petting” us more (something he still does as sensory seeking behavior, he loves to stroke my arms).

This is when my studies became marginally helpful. Despite not specializing in work with children, no one graduates with a Clinical Psychology degree without completing a few child assessment batteries. I had completed Autism assessments in the past– I started to get really worried. Dad was not worried. He is generally not as high-strung as I am, which let him believe that Gooli would just develop at his own pace.

The pediatrician agreed with Dad. This is the point of the story where I start to get a little angry and a little preachy. The pediatrician assured us (having done no formal assessment), Gooli did not need an assessment. He is a boy. Second born. Bilingual. His speech was, of course, delayed. She insisted, “he has feelings, right? Nothing to worry about”. She withheld formal assessment- “if he’s two and still not talking, we’ll check back in”. To be honest, a BIG part of me wanted her to be right, and it was very difficult to fight against my own denial. A little voice kept reminding me about the importance of early intervention, etc. I ultimately did some research and found free assessment through the state. With those reports in hand, the pediatrician quickly referred us to a hearing test and speech assessment, who then referred us to the developmental pediatrician. The developmental pediatrician saw Gooli for 15minutes- and handed us an Autism Spectrum Disorder diagnosis. The hardest day of my adult life… November 7. For some reason I’ll never forget the date.

After the diagnosis came an avalanche! An avalanche of emotion, of research, of phone calls- I share more about next steps in the interventions section.

I ‘m angry just reading this section. I hope that someone out there reading this feels their worries are validated. If you think something is off- FIGHT. Get the evaluation your child deserves. Know that states offer evaluation at no cost to you. To think that certain populations (people of color, multilingual households, etc.) have disparate rates of early intervention that then lead to difference in outcomes… and then reflecting on Gooli’s story… it’s too much.

I also want to offer hope here. The day we received Gooli’s diagnosis, I already knew. I took a picture of him as we headed out the door (in his cutest shirt, hair nice and neat). I wrote a note to myself on my cell phone attached to that picture (I somehow knew I’d need it later). The note said “no matter what. nothing has changed”. Nothing changed with the label- except we got the services Gooli needed. He continued to be the awesome human I love. I’m proud of myself for having overcome my own denial in order to be the Mama he needed me to be, and I hope our story will help others find the strength to do the same.