My kid is not better off dead than autistic

When my oldest son E was four years old, I took him to the GP, and as we sat in the waiting room, I asked him if he wanted to be immunised against meningococcal disease.*

It was 2005. Not long before, a little girl named Charlotte had contracted the disease and become desperately ill. The media followed her family's anguish as Charlotte fought for her life. Charlotte lived, but she and her family went through the heartbreak, the trauma, of the amputation of her four tiny limbs. She was not quite seven months old.

On the wall of the GP waiting room was a poster featuring Charlotte, now a little older, and her family. I explained the poster to E, what had happened to Charlotte, and why her parents had chosen to speak out about the need to immunise kids.

E reflected, his small hand in mine. He said he wanted to go ahead and get the shot.**

To tell you the truth, it wasn't a choice: I knew he wouldn't say no, and I wouldn't have let him. I'd had measles as a kid, despite being immunised, and I remembered enough to know I wouldn't let that or anything like it happen to my own children.

We talked it through anyway. I guess I wanted E to hear how his wellbeing mattered to me. I wanted him to understand how important some decisions are; how we need to weigh up evidence and think carefully when we make them.

There's a kind of poignancy or irony about this story. E had developed literacy and numeracy very early. I talked to him about this kind of stuff because he could reason his way through issues. At the time, his dad and I just thought he was smart. There was more to it. It was only years later that we fully understood the uniqueness, the specialness, of our kid's brain.

Late in 2017, sometime around E's sixteenth birthday, we found ourselves in another clinical room, this time at Hutt hospital. E was transitioning his gender, having been assigned female at birth, to become the young man he knew himself to be. We were seeing a two-woman team of psychologists who were supporting E through his transition. It was they who broke the news, gently and kindly.

They suspected E might have autism spectrum disorder.

How, as a parent, do you react to that? I mean, how can a kid - a quirky kid, sure, but doing just fine - go for 16 years, his neurodiversity undetected? A kid I'd read to, hugged, picked up from school, talked with about anything and everything, loved from the moment I'd known he was inside me? How could a mother not know?

It took me a while to realise my disbelief was rooted in my lack of understanding. Yes, for some people, autism is experienced as a disability. Without a doubt, life with autism can be hard: I don't want to downplay it. But the kid in front of my eyes didn't conform to the stereotype in my head. He was - is - the same warmhearted, community theatre-loving, pun-cracking, science-adoring source of quirky hilarity he's always been.

I submit as evidence the following anecdote. A couple of years ago, I offered E the biscuit that K, his younger brother, said he didn't want. E declined, on the grounds that K might turn around and throw a tanty. E said of K, 'You never know whether he wants the biscuit or not until you eat it. He's like Schrödinger's cat'.

But I digress.

E follows the news. He watches the 'debate' about immunisation, the claims it causes autism. He knows about the travesty of Andrew Wakefield, and the talkshow hosts and peddlers of bunkum who made him a hero. He understands science well enough to know how to weigh evidence himself. And he knows many opponents of immunisation - whose kids are right now threatened by the resurgence of measles - would sooner risk their kids' injury or death than have them turn out like my son.

E, as a person with autism, understands the implications of these views for his own humanity. I'm glad he's got a sense of humour.

Back in 2005, I held four year old E on my lap as he got his meningococcal disease immunisation. I told him later he'd been brave. He said he wasn't brave, because he cried. I replied, that's what made him brave. He was scared, but he did it anyway.

I was proud of him then, like I'm proud of him now.

Imagine for a moment that Wakefield's lies were true. Imagine E and I had stood in the GP's waiting room, in 2005, looking at the poster, weighing up whether a life of autism was worth protection against illness or even death. Imagine that as I held his small hand, I contemplated what it is to raise a child with a neurodisability lasting a lifetime.

I wouldn't change a thing. Not about my choice, not about my kid.

These words are offered in thanks to Charlotte and her family, the people in the poster, all those years ago.

_________________

* All stories written with the permission of my whānau.

** In the interests of honesty, because there's not enough of it in the immunisation debate, there were some genuine issues with the historical roll-out of the MeNZB vaccination. I'll post links below later on if and when I can be bothered.