Tuesday, October 30, 2007

Screening every child

So, the American Academy of Pediatrics is now recommending that every child be screened twice for autism by the age of two. Rob & I watched this news story very closely last night, and I had some very mixed reactions. Relief that they are finally making sure pediatricians know the warning signs and check for them. Sadness that it has come to this: so many children are affected by this disorder now that it has to be part of the routine Well Baby checklist. Satisfaction that our pediatrician saw the warning signs and got us into our state’s early intervention program so quickly – by 15 months. Frustration that we were part of a huge pediatric practice in the previous city where T was born – their modus operandi was to have the baby see a new doc for each Well Baby visit - was something missed that first year because we were part of a meat grinder medical practice? And continued fear and worry over the increase in diagnoses. What the hell is going on here?

I listened to the list of early warning signs, and thought back to T’s first two years. He never did catch on to patty-cake, nor did he point to anything. He did babble, and although he might have been on the slow side of meeting milestones, he met them all. That is, until language acquisition came along – or in his case, didn’t come along. He also had his Ride ‘Em Cowboy crawl (or as Rob & I referred to it far from earshot: the Half-Ass crawl) where he scooted across the floor on one buttcheek with one hand on the floor and the other up in the air like he was riding a bucking bronco. Very resourceful, our child. So we had some warning signs, but nothing that we thought of as too scary. Although, I admit that somewhere along the way late that first year, I stopped looking at the checklists in the “What to Expect the First Year” book – he wasn’t meeting them all, and it was very unsettling. We just thought he was taking his time. He was a happy little guy, extremely easygoing, and we took pride in the fact that we could leave him in the church nursery or with a babysitter and he wouldn’t make a thing over it. No crying, no separation anxiety – what a well-adjusted baby boy.

Little did we know that the last thing I mentioned was a huge red flag. He didn’t really care if we were there or not. He knew us and smiled and was a happy guy, but it wasn’t necessarily a good thing that he didn’t get nervous when mommy left. We also didn’t know that a friend who has an older child with special needs noticed – at 4 months – that T wasn’t making eye contact the way a typical baby should. She said nothing, but knew something was up. After the diagnosis, we heard of her observation. Although many have asked if we were angry that she didn’t say anything, my response is that I’m glad she didn’t. We had a full year free from worry – one beautiful, carefree year – and I am so thankful for that. We wouldn’t have believed that anything was wrong anyway.

As we began the Early Interventions for his developmental delay, I watched each therapy session intently and did all the assigned homework with him between each session. We had therapists coming to the house 5 times/week. I admit that although I saw the delays, I was mentally just humoring them - playing the game and going along for the ride – surely these things would resolve themselves by the time he went to school, or even by the age of 5 or 6. I went into a crying, frantic rage when his first SLP suggested that we plan to take him to the big city children’s hospital for testing for autism – this was at about 18 months. No way was he autistic – she was so quick to diagnose, and how dare she suggest that??? I even called one of his other therapists, told her what the SLP had said, and asked her what she thought. I was so relieved to hear her say that it was way too early to say anything, and that she wished the SLP hadn’t said anything so soon. If I look back on any conversation with regret, it is that one. Maybe it was too soon to say anything definitively – and at the time, I was so relieved. But she must have suspected autism, and didn’t say anything. This is the conundrum we faced: some docs were saying you can diagnose at 18 months – yet some said you couldn’t get a definitive diagnosis until 3 or 4. Even when we said that we didn’t want to rush a diagnosis, no one pressed us on it. I kinda wish someone had. We even had a pediatric neurologist examine him not long after that, when we thought he had a seizure, and she told us that he was way too social to be autistic. But dammit, that’s what he was, and what did these kind souls do by not telling us the truth? I guess we’ll never know. Maybe – probably – we wouldn’t have done anything differently.

I try not to dwell on the unfairness of all this. We were first time parents, and didn’t recognize the red flags even though they were flying in our faces. If we had had a typical child first, I’m sure we would have caught on much earlier. But we didn’t, and I can’t “what if” or “if only” myself too much.

So even though I watched the news report with mixed emotions, I think it is high time that all children are screened for autism. Now if the AAP would take away egos and financial concerns from the debates about causes, we might get somewhere.


Rob said...

You know, it's funny: I don't need a doctor to diagnose autism at this point. I can see it 10 miles away in other kids now. Also, when I meet typically-developing infants, I see how fundamentally different they are from how T was when he was their age. I never thought we'd be experts on something like this, but I think we are.

nonie said...

You write from the heart and I remember going through this process with you and Rob...all of us wanting to give T more time.
Though it was/is hard to hear the professionals diagnose and recommend, you have been amazing in always focusing on what is best for your child...not what is easy for mom and dad. Blessings and God moments should shower upon you.