The Long and Winding Road
February 24, 2014
Last week, out of the blue, one of the doctors finally called us back. The one we wanted to see in the first place, but had given up on. He could see us on Sunday. Would that work?
Noah and I spent several hours with him yesterday. I sat with my giant binder on my lap — every piece of important paper we've generated since the Early Intervention days — while Noah played with a Magic 8 Ball and simultaneously broke my heart and took my breath away with his amazingly self-aware and articulate answers to the doctor's questions.
I see too many things all the time. I'm always distracted. My ears don't work. My brain needs to be fixed. Can you help fix it? I want to be smart and I'm not. My ways are not the world's ways.
There's a war in my head and the bad guys are winning.
Of course, these responses came out in between long, detailed descriptions of the entire plot of The Lord of the Rings trilogy, and were spoken while he turned upside-down and backwards on the couch, as if it were physically painful for him to sit still for even a minute.
That we left with prescription for an ADHD medication was not, obviously, a surprise.
The doctor's casual mention of Noah's place on the Autism Spectrum, however, was.
He seemed surprised at my surprise. Because? Obviously?
"But...my binder..." I started to say, holding it up uselessly. Pages and folders and long reports held together with binder clips and copied in triplicate. Representing years of time and money and yet the word "Autism" never appears with any clear authority.
Instead: Quirky. Delayed. Sensory Processing. Dyspraxia. Rigid. Endless lists of symptoms that never lined up with any one thing. Battle plans to combat the vague catch-all acronyms of PDD and SPD, with a likely side of ADHD. But not Autism.
And replaying frantically in my head, the face of every teacher and evaluator — while not technically qualified to make that diagnosis, but who we trusted to tell us if that was where they thought Noah would ultimately land — who said some variation on "no." Or more accurately: "I don't think so," before pointing out how Noah overlapped here and there but would miss some specific diagnostic criteria there and here.
And then it hit me. Oh. That was then. Before. The new DSM came out and changed it to a larger umbrella of varied Autism Spectrum Disorders. Noah's speech delay no longer kicks him out of the running for Asperger's. His high level of functioning no longer demotes his social problems and rigidity down to "quirky" or "Spectrum-y." No, he's just Spectrum, now.
I put the binder on the couch next to me and blinked at it few times. Six and a half years of chasing down answers and solutions, of thinking we were somehow "beating"...whatever it was, and of long since assuming that there were no more real surprises in store for us because we were just so very on the ball and proactive.
Reply hazy, said the Magic 8 Ball, ask again later.
The doctor handed me a list of names to contact about a neuropsychological evaluation, just to make it official for school. He was really very kind.
I just created a new blog category for this entry called "ASD." I can't stop staring at it. I want to argue with it, to point out the obvious that we haven't had the evaluation yet and that I don't necessarily have to take the word of one new doctor over people who have worked with Noah longer. I understand their reluctance to slap the Autism label on him too early, to put him in any one category during his most fluid, plastic years.
But he's right. Deep down, we've known. I've known. But when no one else is saying the actual word it's easier to stay out in the squishy gray borderline, and to believe you'll be there forever.
I've spent the last couple hours writing and rewriting the same three paragraphs; three paragraphs about what this changes and what it doesn't. I finally deleted them because frankly, I just don't know yet. I have to make more appointments and have his teachers complete assessments and get his prescription filled and focus on documenting its effects and getting that right...and his IEP meeting is next week and it's a re-evaluation year and I'm guessing this is going to kablooey that meeting right up (scientifically speaking), since I don't want him coded as ADHD because ASD means a wider range of services, but of course the private eval won't be done in time so gahhhhh.
It doesn't change Noah, of course. He's the same kid. The same high-functioning, loving, smart, frustrating, awesome kid who has worked so hard already to get where he's at. It doesn't change our commitment to do whatever it takes to help him, or our unconditional acceptance of who he simply is.
Without a doubt, said the Magic 8 Ball, outlook is good.