September 27

Diagnosis Day


She said, he seems a lot like kids in the preschool where I taught back home who were called autistic…

That didn’t sound good but I wasn’t going to ignore her, that’s for sure…

After the birth of our second son, Kirby, and just 11 months after the birth of our first son, Zandy, things were hectic. We were raising “Irish Twins” as we were to learn they were sometimes called: two kids less than a year apart. I was in a big job at Reuters looking after marketing and traveling for work a lot (those big job days would end soon enough when we became an “autism family”). Jana was trying to keep it all together but she was struggling with chronic illness herself, and we needed help.

One night we talked and decided to try the Au Pair angle. Where from though? We decided that we had enough chaos already so English speaking would be good. We talked about it and decided everyone we’d ever met from New Zealand was cool and hip. And so a little “Googling” later and we’d found an Au Pair agency out of New Zealand and a young lady named Nikki who wanted to try out an Au Pair stint in the States.

To make a long story short, Nikki arrived and over a short time, she became fast friends with our close family and extended family friends – all of whom are called aunts and uncles by my boys. It’s a long way from Philadelphia to a small town on the South Island of New Zealand called Blenheim. But a new Mac laptop, WiFi, a low-cost N.Z. long-distance calling plan, an extended cable package that got the All Blacks rugby team, and her own space in a ’55 Flxible Bus in the driveway made the homesickness bearable, and soon enough Nikki was “one of us”.

Kirby was a bit quirky as a baby. He didn’t sleep as Zandy did – well he didn’t really sleep at all. He interacted differently. He seemed to prefer his own company a bit. But he was healthy and was happy enough… we figured he was AOK.

So we were somewhat surprised when Nikki wanted to talk to us about something serious and she said: “Kirby seems like he might be autistic.”

As it turns out, she’d be warming up to this for some time and had sought input from our close friends. They all encouraged her just to say what she thought. While were surprised, we kept an open mind. Better to be open-minded than miss something important right? I tell other parents in the early stages of diagnosis now.

So Nikki explained how some of Kirby’s behaviors were similar to autistic kids in the preschool where she taught back at home in New Zealand. So we started to pay more attention to these behaviors. He was only 18 months old so it was hard to see that these were so different than typical, but she had seen it and she nailed it.

Nikki probably saved us months or even years of lost intervention time by being brave enough to come and talk to us that day. And thank goodness for our dear friends who she felt comfortable approaching and rightly advised her just to bring it to our attention. To all you parents in the early stages of diagnosis – be brave and be open-minded is my advice. Don’t lose precious time.

So we watched and we discussed and we debated with friends and with Nikki – who was the only one of us who had real-world experience with autism. And about that time I had lunch with a good friend from work in New York and he gave me the most wonderful advice – I share it with early days parents all the time – and here it is:

There is no danger in an “over diagnosis”. The worst case is the kid gets a lot of extra attention. But the opportunity lost by putting off starting the hard work of helping an ASD kid to thrive is uncountable. That time will never come back. The lost opportunity is immense. So do not fret an ASD diagnosis – it’s better to have to revise the diagnosis than to lose time.

And so we called the local Easter Seals office where they did the ASD diagnosing and coordinate the pre-school age intervention programs. They sent a nice lady who watched Kirby and took notes and some light data and a few days later she came back and said: “Kirby has autism”. And still we pushed to make sure, the “diagnosis” didn’t seem very scientific. So she came back again. No change. I pushed back a bit more. And then she said something that I’ll never forget:

I know this is going to sound unbelievable but I’ve been working with very young autistic kids a long time and I can pretty much just look at a child and tell you if they’re autistic.

She was right, I definitely didn’t like that. I prefer data and baselines and measurements. I’m a software and science kind of guy. Funny thing is, now 11 years later – I can do it too. I can look and I can see autism in people. It’s weird but it’s true. I believe her now. And now I know Nikki could just “see it” too.

We were lucky that Nikki could see it. Kirby’s services and our “intervention” work started at just over 18 months. We had an early ASD diagnosis which meant services were justified right from those early days. That meant less fighting between schools and the State. We learned how to be strong advocates. Nowadays, Kirby keeps coming out of his shell slowly but surely. He keeps learning. He’s physically healthy and happy. So many others have so much more to contend with than we do…

That was our diagnosis day(s). I think we had it pretty good. We were open-minded. We got services. We focused on the future and not the past. We didn’t spend too much time asking “why”. And that’s how we still live.

Autism Village is about extending that attitude to the entire autism community. All of you are now our extended family and friends. We’re not the cause or cure of people. We’re not educators or therapists. We think awareness is nice. We think acceptance is really important…but most of all we want to solve the practical problems that make day-to-day life hard and almost impossible for families dealing with autism and for autistic adults.

We hope that you’ll jump in and come along for the ride:


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