It’s official…getting the diagnosis
Kiddo’s been put on and off the Spectrum several times over the past few years. Put on by his pedi, taken off by his neuro. Put on by this doctor, taken off by that. We’ve been waiting for almost two years to be scheduled at the autism specialist center connected with the major children’s hospital in the city and have an evaluation and discussion with the pediatric neurologist there, knowing that any diagnosis or lack thereof would not change who our son is and what is going on with him. At best, it’d give us something to write on insurance paperwork that was better understood as a concept instead of attaching a laundry list of MRI findings and therapists notes.
The meeting with the neurologist at the center was…odd. Not in the wacky fun sense but just anticlimactic more than anything. For almost two years, we’ve been waiting. Getting the run around from front desk staff who didn’t understand what we were asking (the staff is shared with a neuro clinic on the floor above them and, whilst they’re both pediatric specialty clinics, not all of the staff are conversant in all of the issues dealt with by both clinics), long waits and mounting frustration when dealing with service providers… When we finally walked into the clinic waiting area and were given our buzzer and told to take a seat, it was just like any other neuro visit wait. Spawnlet ran around and played with books and a dollhouse and pretended to crash into invisible things, he played and got bored… and finally we went back to see this neuro we’d been waiting ages to see. It took hours, from the initial eval to watching him play with other kids (or not, as the case was), to more discussion, to an argument about ASL (she felt it was not a good idea, despite mounds of research to the contrary and proof that it does not cause speech delay… the ONE thing I had a huge problem with when it came to this visit was her attitude towards ASL but full support of speech generating devices. I’m a fan of the devices but claiming ASL was inferior? No thanks. We’re using both and he’s thriving in his communication.)
Finally, it was after five and the clinic was closed. She’d already asked about our plans for Christmas and the holidays, stalling a bit as she fiddled with the computer and then at my son and sighed. She asked about how Pagans deal with Christmas and if we’re not putting the kiddo in play groups because of religious bias (no, but we’ve been asked to leave one because the other parents were scared of paganism) and suggested we find a “friendly” one… FINALLY, finally, she sighs and says “I’m putting him on the spectrum. The other doctors he sees shouldn’t be taking him off now since this is coming from a specialist center and isn’t a diagnosis by someone who may not see Autistic patients all day or have very little experience with it.” I expected to feel a crash, or numb, or…anything other than “Ah, good, that means we can go grab dinner now.” I looked at my kid, playing with his plastic frog and whispering in his language to it, and he looked up at me, signed for his dad and I nodded. “Okay, then. Keep on with his OT and ST?” The neuro agreed and said keep on keeping on. I thanked her, and we began the long trek to get out of the hospital and into downtown traffic.
I won’t lie and say I didn’t have a bit of a freak out later. I did. Even knowing that he’d likely get the official diagnosis, it’s different when you see it on paper, different when you look at him playing and think “He has Autism. He may never speak aloud. He may be accused of horrible things by people who think Autism means violence, who think he’s somehow less-than neurotypical kids…” I let myself feel these panicky things, knowing it won’t be the last time, but I let them wash over me and, behind them, came the thought: These things may happen, but they may not. What will happen is that he will always be loved, he will always be him, and he will always have blood and chosen family who will do their best to ensure he has the best life possible and learns how to be part of the world around him.