We recently took Buddy for a follow-up visit with the developmental pediatrician who diagnosed him. I hadn't originally planned on following up with Dr. L as I wasn't really sure what, if anything, we'd gain from it. But all his therapists recommended it when they evaluated Buddy back in March since he has made such awesome progress. As the day for the appointment grew closer, I was getting kind of excited. I wondered what Dr. L would say about Buddy's advances and language. Everyone says he's like a totally different kid from when he was diagnosed.
So off we went for the follow-up visit. It's an hour and a half drive to Dr. L's office, but the kids did ok in the car. Once we got to Dr. L's office, we were told there was a scheduling mix up and that they didn't have Buddy down for an appointment that day. That meant we had to wait an hour to be seen. When we finally saw Dr. L, the disappointment continued. He barely looked at Aidan, except to point out minor things he was doing which Dr. L called autistic. Really minor things like playing with toys at eye level and using a few signs along with his words when requesting something from me. Seriously, if those are the most autistic characteristics/behaviors that a developmental pediatrican notices, I think we're doing pretty awesome.
I asked Dr. L about the usefulness of re-evaluating Buddy since he's made so much progress, and I was told that autism is a lifelong diagnosis so re-evaluation through a diagnostic clinic isn't really useful. The goal of all our therapies and interventions, according to Dr. L, is to move Buddy up the spectrum from classic autism to Asperger syndrome or PDD-NOS. He also mentioned that the social-emotional expectations for a typical 2-3 year old are pretty low which explains why Buddy isn't struggling all that much in that area despite being autistic. However, as social-emotional expectations become more complex and advanced, we'll probably see him struggle and it's just a question of how much support will be needed, not if support will be needed.
After being buoyed higher and higher by the truly great strides that Buddy has been making these past months, I came crashing down with his words.
Lifelong diagnosis. Lifelong diagnosis.
I get that's what the prevailing medical community believes about autism. But what I don't get is how a diagnosis that relies on a series of behaviors can be lifelong, even if the diagnostic behaviors no longer exist. I know there is a good chance that Buddy will struggle in the future, despite the great gains he's made recently. But I also would like some hope. Hope that things won't always be so hard. Hope that the hard word we're doing now will pave the road in the future and lessen the bumps along our way.
But the mainstream medical community isn't so into offering hope to us spectrum moms. So instead I push forward with our therapies, and worry and wait to see what the future brings.
