Turns out my boy was different, and quirky -all the time. Wonderfully so. But I would not term his condition ‘mild’ when the correct words are ‘profound’ and ‘encompassing’. There are times, at transition points and crises, when only the phrase ‘less-severe autism’ suffices too.

The world has fundamentally changed. These children who decades ago could ‘slip through unnoticed’ in a classroom, home or workplace setting are no longer able to remain invisible.

‘Common sense’, best defined as the immediate apprehension of the bloody obvious, dictates that a profound difference be enquired into, acknowledged, accommodated and allowed for, at least to the degree the more flexible 99% of the population is willing. But that’s the real beef here isn’t it. Some aren’t.

And that’s why I started Asperger’s Syndrome New Zealand – just for us autists with lived actual experience of the creaking painful raphsody that is Asperger’s, because my son and I were fed-up with all the utter crap being mouthed about ‘cure’, ‘disorder’, ‘mild’, ‘fad’, ‘dangerous’, ‘ABA’, ‘savant’, etc., and we quietly proceed knowing the biggest issue in autism today is really about making a place for the displaced. And that is not going to happen – ever – without us all being asked how to.

Which is where I take issue with Nigel. A teacher who’s spent six months managing a kid has had a lot more time interacting and observing behaviour than a diagnostician will ever have. I tend to think an experienced teacher suggesting that Asperger’s is the issue isn’t such a bad thing. It’s what leads to a formal diagnosis.

Essentially, my point was that incorrect diagnosis isn’t the biggest problem in this sphere; far from it. Might we agree on that?

I don’t resile from what I wrote, at all. You were grandstanding in that interview, and your dismissal of “kindy teachers, teachers, psychologists, therapists” who allegedly know less that you do was self-serving.

I have two teenage sons who are Asperger. As it happens, our older son was diagnosed subsequent to a referral from his kindergarten, where teachers sensed there was something unusual going on. The diagnosis, not long after Aspergers had entered the DSM, briefly took us aback. You know what we said? “Oh, but that’s just him. He’s just different.”

That lasted about an hour until I found Barb Kirby’s wonderful O.A.S.I.S. website, whereupon things fell into place. We were able to move on from there, and eventually got ORRS support. It might have been easier in the present day, now that the condition it more widely understood. So I don’t relate to your idea of diagnoses being “thrown at parents,” at all.

Our younger son was diagnosed later — again in a formal, specialist setting. That was a bit of a shock. But I feel lucky that we were in Auckland, were we were at least able to get a timely assessment. I’ve known people in other centres desperate to get a formal diagnosis.

Are there informal diagnoses being made in classroom and clinical settings? Yes. Are some of them wrong? Sure. But I regard that as a lesser evil than a child who may have a profoundly different experience of the world being overlooked or held to standards he or she cannot meet. We suffered through inappropriate behavioural strategies for years (notably from one particular GSE worker) so I tend to think of a broader awareness of ASD conditions as an improvement, on balance. Even a child who doesn’t meet formal diagnostic criteria might display some symptomatic behaviour, and benefit from some more nuanced thinking about what makes him tick.

After a lot of soul-searching, we did opt for medication for our younger boy — a low-dose SSRI to treat his disabling anxiety (this is an increasingly common off-book treatment for adult Aspies, but that will be his choice) . We also removed him from school. The improvement was profound. We don’t know what the future holds, but we have gone from three years of near-daily meltdowns to a loving, open family life. I’m just glad we were smart and strong enough to resist the behavioural solutions pressed on us by some people (including, unbelievably, sending him to a residential facility).

We’re not pushing our children to be “normal” — parents who do that wind up in some bad places; they’re often grieving for the children they didn’t have. I know my children are different, they know they’re different. An ASD diagnosis has helped us understand how they’re different. A personal level, it’s helped me understand how and why people can be different, and I’m grateful for that.

The post above was fuelled to some extent by a recent radio interview you did, in which the concept of common sense was extensively aired. After nearly 20 years of autism in the family, I’m all too aware of the limits of “common sense” in our job of parenting.

There’s a forthcoming story in North & South magazine that looks at all these issues in an informed, rounded way. I hope lots of people read it. In contrast, Nigel, I just wish you’d be a bit more careful about what you say in the media.