Greg Finucane - Different Strokes

If having an autistic child has taught Auckland neuropsychiatrist Dr Greg Finucane one thing, it’s that differences are more important than similarities. “It’s a classic professional trap – ‘This person is autistic, this is what happens,’ instead of ‘This is an individual, they’ve got this problem and they have their own interaction with the problem.’”

Finucane suspected son William, 10, had autistic tendencies when he was about 18 months old, because of a combination of poor eye contact and the loss of some words he once had. William was also more passive than his two older brothers had been.
“I just thought, ‘Oh shit, this isn’t good.’” Finucane and Rosamund Hill, who are friends and professional colleagues as well as members of Autism NZ’s medical panel, have chosen vastly different treatment methods. Finucane decided early on that William was not only not benefiting from applied behavioural analysis (ABA) but was fighting it.

“We had a language therapist trying to do the behavioural thing on him, asking him to identify a word or picture, and the reward would be a jellybean or a Smartie. The first time, William would have a decent crack at it and get it almost right. The next time he’s have a half-hearted crack at it and after that he’s go. ‘No, I’m not doing this any more.’ Do you break his will to get progress or give him something else developmentally appropriate? We thought, ‘We’re not going to do this to William, we’re going to work with him around the sides.’

William seemed to have strong enough will when it came to fighting the therapist that I thought maybe we can work with what he wants. You have to find a common ground.”
The developmental approach means taking what William can do and working with that, rather than the “torture” of being forced to do what the therapist wants.
Finucane says he first felt a strong connect with William when his son was about three. “I was in a bath and I just spontaneously started playing a game of some kind, making it up and doing something completely silly and he started doing it with me, and started laughing and we shared some experience.

That’s what made sense to him – he could do stuff rather than try to think about stuff.”
What William enjoys is what Finucane describes as “vestibular input” – physical rough and tumble, being in or on the water, in lifts or on swings, slides and seesaws.

Like Hill, Finucane says having an autistic son has changed him as a doctor. “I’m more aware of the humanness behind a condition.” It’s helped him forge an affectionate bond with William that he says is returned through hugs and other gestures. “William is a really cool kid and a happy kid.”
Though he has some language, can write, attends a mainstream school in the morning, William finds social interaction difficult. He’s likely to repeat what someone has just told him, the repetition, says Finucane, confers predictability on an unpredictable world.

Finucane says he was drawn to psychiatry because of his family’s link to writer Janet Frame, his mother’s first cousin. Though Frame’s mental illness was never diagnosed, in 2007, after her death, a New Zealand Medical Journal article surmised she had high-functioning autism, or Asperger’s.
Walk until 16 months and also has the irregular toe-stepping gait typical of the condition.

Hill says Claude’s sleep patterns coincidentally went ‘completely to pot’ once he was diagnosed. For four or five night a week, he’d go to sleep at 9.30pm then wake between 2am and 4am ‘full of beans’. In the past, Hill says she tried everything to get him back to sleep, including doses of Ritalin, but now she’s accepted that Claude’s brain chemistry is simply different, she doesn’t even try to force it.

As he’s got older, however, he’s become less interested in the few ‘normal’ pastimes he used to enjoy. He doesn’t want to be read to any more, and barely watches DVDs. While he still enjoys jumping on the trampoline or riding his bike, “in the house he doesn’t do anything to amuse himself that’s vaguely normal.”

Despite up to one in 100 New Zealand children being diagnosed with autism, there are no medical specialists in the condition, with autistics often falling into a treatment void between psychiatry and neurology.

Hill and Wylie both still struggle with the day-to-day demands of raising a severely autistic child, and so, in her way, does Annabel. Just the other night, says Hill, Annabel was feeling unwell but didn’t wake her mother because this was one of the few nights when Claude was sleeping through and she didn’t want to disturb her.

Having an autistic child, one parent told us “sucks the care of the household.”
It’s easy to see how parents and marriages, crack under such strain. There were times Wylie, the high-profile former CEO of iHug and CallPlus, thought caring for Claude at home was simply too hard. But, as Hill points out, parents have no choice – apart from a few days’ government-funded respite care a year, there’s no way out.

The psychopaedic hospitals which once took such children no longer exist. The only option for parents who can’t cope is to have their children fostered out or adopted.

What will happen to Claude as his parent’s age is another worry – already Wylie is investigating building a kind of “upmarket retirement village” for disabled adults while Hill has channelled her grief into an “absolute obsession” with finding out more about the condition itself. Hill, who did her doctorate on epilepsy under internationally renowned brain researcher Professor Richard Faull, now hopes to return to the lab, investigating, with a molecular geneticist colleague, the genetic basis of the sensory sensitivity in autistic patients.

She acknowledges the bittersweet irony of being a neurologist with an autistic child. “The sweet part is that I’m in a unique position to do some decent research because I’ve already done research in epilepsy and I have a passion now for autism.

“It’s given me this absolute obsession with this fascinating neurological condition. I just keep saying it’d be much nicer if it wasn’t my child who prompted this.”

In the meantime, she continues her private and public practice as a neurologist, specialising in epilepsy and headaches, knowing the experience of raising Claude has made her a different – and better – clinician.

“Personal experience of major illness changes you as a human being, and as a doctor, I think doctors have a tendency to focus on the more interesting aspects of a problem sometimes, rather than the boring day-to-day aspects – but those are what drive the patient or a parent nutty and they really need help with those things. And sometimes, people just want and expect you as a doctor to listen to their problem, even if you can’t fix it.”

Only occasionally does she allow herself to wallow in what-ifs. “Sometimes, in situations where there are lots of normal kids, I get overwhelmed. There’s 25 gorgeous, bright, chatty little kids having a party and I’m running around because Claude’s taking his clothes off.” I think, “God, it’s just not fair, why can’t I just have a normal kid? I’m not asking for a genius, I just want a normal kid. But that’s not how it is. It’s not productive. You can either be miserable or go, “I’m going to be perfectly happy” - and you can be – “and I’m going to deal with it “. “You can choose how you’re going to deal with it. And then you have a couple of gins.”

Original Article: North & South Magazine April 2011 about Dr Greg Finucane