Rob Donley and his daughter deal with their ADHD using an approach they call 'wizards and muggles'. Photo / Doug Sherring
If you've ever encountered a child and felt exhausted by their activity, unnerved by them chatting away or confused by their refusal to make eye contact don't worry, Rob Donley says — it can be hard for the average muggle to understand what's really going on with wizards.
Donley and his 11-year-old daughter, Maddie, have been diagnosed with ADHD. To help her manage teasing from classmates, and the stigma and ignorance from other parents, they've come up with their "wizards and muggles" theory.
Wizards are those with ADHD. Muggles are the rest of us, sadly lacking the wizards' "superpowers".
Donley says he has told Maddie that wizards with ADHD are extra special and everyone else is just envious. "I said they tease because they haven't got what you've got. You're better, faster, stronger. Of course they'll be jealous."
Donley was always the naughty kid at school, the one who didn't listen. But he didn't get a formal ADHD diagnosis until he and wife Kate took Maddie to be checked out when she was 7.
Donley was sceptical. But when he saw how worn down and worn out his wife was becoming, he agreed. Maddie had run out from behind a car and almost been run over and was finding it hard to co-operate in class. "I thought my wife was going to have a mental breakdown."
Attention Deficit Hyperactivity Disorder is genetic so when the diagnosis came back for Maddie, Donley was tested and returned a result that he describes as indicating "nutbar ADHD".
He and Maddie split the trial drugs she was given and for the first time, everything slowed down. The 1,000 bees that had taken up residence in his head finally took flight.
"All the white noise and clutter was gone. It's been explained to me as they can't slow the action part of the brain down so they give you Ritalin to speed the thinking part up so they match."
Donley now takes his medication only occasionally, such as if he needs to sit and focus on writing a report.
He is still a little uneasy about how freely drugs are given out. "We are too prone to giving drugs to kids, but a friend who is a pharmacist said if Maddie had a heart condition, would you give her a pill? I said 'of course', and she said, 'what's the difference? She's got a head condition, give her the pill'."
Kate says they face a lot of stigma. "When your child misbehaves in public, it makes you feel really embarrassed. But I've got two kids and they're only 20 months apart, with completely different behaviour and the same parenting."
Estimates are that between 3 per cent and 5 per cent of New Zealand children — between 35,000 and 55,000 — suffer from ADHD. That's about the same as in Britain but much less than the one in seven diagnosed in the US.
The number being prescribed medication is steadily growing, though. In the 2013 financial year, 144,000 prescriptions for ADHD medication were issued, up from 98,000 in 2005 and 132,000 in 2012.
There are three types of ADHD — the best-known hyperactive/impulsive ADHD; predominantly inattentive ADHD, which is most common in girls and causes daydreamy inattention; and combined ADHD, which bundles all the behaviours.
But the condition is often dismissed as a First-World problem, "boys being boys" or a parenting failure. There are concerns that children are being given medication when it's not needed.
One Auckland woman, who does not want to be named, is alarmed at how quickly an ADHD diagnosis was handed to her son. She had taken him to a child psychologist after the school suggested he might have the disorder.
"The psychologist read a report about his distracted behaviour at school, saw him on his own for 10 to 15 minutes, and told us he thought he was ADHD and we could consider Ritalin. Because he showed no signs of ADHD behaviour at home, I suspected it could be the school."
He moved to an all-boys college and became a different child, she says. "The boys all go for a run each morning; no teaching period is longer than 30 minutes and they have good systems in place to deal with fidgety boys. Problem solved."
Bay of Plenty child psychotherapist and founder of the Family Attachment Charitable Trust, Augustina Driessen, would think she's right to be sceptical.
She believes ADHD is grossly over-diagnosed and is often just the manifestation of a problem in the bonds between parents and children.
She says a lot of what she sees being called ADHD is a result of a lack of a secure emotional bond between parents and children, or a lack of boundaries.
"If a child's needs are not met, they may appear to be naughty or don't listen. The parents can't cope, they go to a paediatrician or psychiatrist. They're not looking at what has gone on beforehand and say 'there are signs of ADHD, put him on Ritalin'. I believe this is happening a lot. Everybody is being labelled, I think it's very scary."
Otago University ADHD specialist Dione Healey has heard people say ADHD diagnoses are handed out because you can hand over a prescription, whereas other conditions require more labour-intensive treatments such as parent training.
"[The idea is] it's easier to give them ADHD because it can be medicated."
But she doubts anyone is getting it wrong terribly often. "On the whole, clinicians are trustworthy and don't easily diagnose. I don't get the sense with the kids I see that they have been misdiagnosed."
It doesn't help that diagnoses are subjective. Unlike a medical condition where a scan could be run on the brain and a clear result seen, for ADHD it's up to clinical observations. "People can be biased for various reasons. They want a diagnosis for various reasons or they're anti-diagnosis."
With medication side effects including loss of appetite, slower growth, difficulty sleeping, changes in personality and nausea, Marceline Borren, of the ADHD Association, says it is a last resort. "When people say they're just stuck on drugs for the sake of it, that's not my experience."
She agrees observational diagnosis can be problematic. "They use rating scales and questionnaires.
"That has to be filled out in two sittings — at school and at home. It has to be consistent in two settings to rule out a parenting problem. It's necessarily slightly subjective. That opens everything up to criticism."
Healey says a pyramid analogy is often used to describe the prevalence of ADHD. At preschool, a lot of children demonstrate ADHD-like behaviours. But the rates decrease over time. To be diagnosed, someone has to show the symptoms and also be impaired by them. "The most important part of diagnosis is the degree of impairment," Healey says. "You screen big groups — I've done it with pre-schoolers — and take out all the children who rated highly on symptom rating, then take that group and look at the rates of impairment. Only a third are actually impaired."
People could continue to show symptoms but no longer be classed as having the disorder if they developed techniques to manage them.
Healey is developing new treatments to teach children self-regulation and brain-training to deal with ADHD. Existing treatments, such as medication, seemed only to be effective while they were being used. "People don't tend to want to take medication forever because of the side effects. But then the symptoms come back."
She says parenting does not cause ADHD. "It can be managed through specific parenting techniques but parenting can't cause it. That's a misperception."
Jock Matthews, clinical director of Auckland's Rojolie Clinic which specialises in depression and anxiety treatments, says one of the complicating factors for a lot of parents is that they may be trying to deal with a child who has ADHD while managing some of the symptoms themselves.
Adult ADHD is attracting even more scepticism. A researcher told an Australian psychiatrists' conference that one in three adults being tested for it is faking it, hoping to get a prescription.
Matthews says many adults would no longer be hyperactive, but might still suffer poor concentration or disorganisation. Parents from all over the country come to his clinic, often because their children are struggling at school. More people are being proactive, looking for a reason their children are suffering, rather than writing it off as bad behaviour.
And Donley is on the right track with his description of ADHD wizards, Matthews says. "Kids with ADHD are often very bright, social, engaging and artistic. They can put ideas together in a way that's extremely good. They have the x-factor that other people don't get."
Brando Yelavich answers his phone from his raft. He is paddling towards Red Beach, North Auckland.
The 20-year-old has about eight or 10 weeks left of what he has called his epic adventure — walking, running, swimming, kayaking and rafting around New Zealand, alone, to raise money for Ronald McDonald House. Today is the 519th day of his trip. To finish, he has to get from Auckland to Cape Reinga.
It has been a chance to conquer his own Everest, he says, to prove that the dream of walking around New Zealand isn't as mad as people tried to tell him — and show that a diagnosis of ADHD doesn't need to hold anyone back.
Yelavich had wanted to join the army but was told he might not pass the entry exam because of his learning difficulties. "Because of not achieving at school as a result of ADHD and dyslexia, I decided to do something great which helps others."
Yelavich hopes to be an inspiration to other people with the disorder.
"Quite a few children with ADHD go through a depression. I know I did. You feel you're never going to be the same as everyone else, the odd one out. I'm trying to put the message out that lots of people have it, and what's normal, anyway?"
He was diagnosed at six and grew up thinking ADHD was a bad thing to have, mostly because everyone else seemed to think that way.
Now, when he goes to schools, he tries to tell kids that it can be a positive thing. "To me, maybe I'm a breath of fresh air in people's lives. How you look at it can define who and what you are."
His ADHD hasn't been a hurdle at all on the trip, so far, although he stopped taking his medication last April when it started to make him depressed. Being alone on the trip gave him the opportunity to tune into his body and mind and realise it wasn't helping as much as it once had.
"When I was coming off the medication, that was a big deal. I'd been so reliant on it my whole life, then I just stopped."
The experience has been life-changing for Yelavich and he hopes to write a book and make a film or documentary about it.
"This trip is about proving myself to myself, not to anybody else. But it's showing anyone who does watch that anything is possible, it doesn't matter who you are or if you were bad at school, you can do anything. Don't give up on your dreams — if your dream is stupid and crazy it might be the best dream you've ever had."
Florence Prosser always knew her son, Nicholas, was a full-on child. He was born just 20 minutes after arriving at hospital, suffered colic, would wander into the farm next door and hide around septic tanks and electric fences — and wouldn't take no for an answer.
"You'd say 'don't pull that plug'. He'd look at you and smile and go back to the powerpoint."
But an incident at playgroup when the now 10-year-old was almost four made her think there might be something else going on.
"They were doing a stocktake and one mum had decided to place blocks into towers of 10. They were stacked like dominoes. I knew how he was going to react. He came in, saw that and went flying towards it, running across the hall, whacking the blocks."
The mother who had been counting the blocks was outraged. Prosser bundled him under her arm and took him home, kicking and screaming all the way. "I thought, 'something is not right with this child'. At home, I went on the internet and read about the symptoms of ADHD. I phoned my husband in tears, saying it's him to a T. He could be the posterboy."
Prosser took Nicholas to their GP, who referred them to a paediatrician. He took one hour to tell her Nicholas had ADHD and oppositional defiance disorder. She was then told to read a book about the disorder, get a trampoline to burn off the excess energy and "have a nice life". He also suffers from mild Aspergers, anxiety and dyslexia.
Prosser felt vindicated by the diagnosis.
She had been worried there was something wrong but had her concerns brushed aside time and again by people who put it down to him just being a boisterous boy.
She had been left questioning her parenting but couldn't understand why Nicholas was so different from his older brother.
"My parenting style should be the same, there were no issues with the first, so why so many with the second? You go through a grieving thing because you're handed a sentence. But a sigh of relief as well because you know what you're dealing with and you can start dealing with it."
Despite her initial reservations, Prosser had the prescription he was given filled. "For the first time ever, he sat down to eat. Usually he would be running around, too busy to sit down. He said 'thank you' when we gave him a sandwich. It was like the dots were connecting for him."
It's been a roller coaster since but Prosser says they're in a good place now. "People see the characteristics of ADHD and don't understand the neurological process that goes on behind it. That's our biggest challenge.
"When he was younger, he couldn't handle noise and one way to block that out was to scream. All anyone around him could see was a kid yelling his head off [They thought] he needs a good whack to shut him up. That's the stigma the condition has."
Where to get help
• Talk to your GP
• Contact the ADHD Association
• See Mental Health Foundation of NZ
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