I remember it like it was an old sore and someone snatches off the scab! Thoughts of that day still pain me like it just happened. My gut was screaming. Something was not right despite my pediatrician saying everything will be ok – boys are slower than girls and he’ll talk when he’s ready. I thought: Who am I to question what I was being told? I mean; he is the doctor.
I couldn’t sleep the night before the diagnosis reveal. My brain was in overdrive. I felt relieved because I had been waiting for years, months, days – and now tomorrow for this appointment. I was terrified because I was afraid my motherly instincts would be confirmed. Finally, the attendant called my son’s name and we went to the back.
I watched as several people came in and out observing my son then writing down notes and talking to each other. Everything they were saying sounded like the adults in a Charlie Brown cartoon. I knew they were speaking English, but I had no idea what they were saying or what it meant.
Although they introduced themselves, I felt irrelevant – like they talked at me, not to me. They would ask me questions and then write something in their notes and then they went back to trying to interact with my son again.
Afterward I was told we could wait in a room and someone would be in shortly. “Shortly” felt like eternity and finally a psychiatrist – at that point I don’t know what his title was because I had encountered so many people with titles that day — came to speak to me.
He said, “Your son has autism.”
I can see my expression clear as day because I’m not good at holding a poker face. I’m sure I looked confused and angry. Confused because I knew something was not right. And I felt betrayed and lied to by my pediatrician. I kept hearing “autism” like it was echoing in the room although it was only said once.
I’m now waiting for someone to explain what this new word meant; and at that moment I had no idea that it was going to change our lives and the way we lived forever.
I remember leaving feeling numb, like the world around me was functioning normally and I was stuck in a bubble. As much as I wanted it to pop, I knew it was a safe space and I wasn’t ready to interact with the world – not at that moment, that day, or ever.
Michele Abraham-Montgomery is a Family Peer Specialist providing self efficacy, empowerment, advocacy, and resource information to families for over 20 years. She is the co-founder of Spectrum Success 911 alongside her son Khylil Robinson, who is proudly working as a Community Autism Peer Specialist. Spectrum Success 911 is a nonprofit that supports families and individuals living with autism and mental health differences.