ADHD is primarily a genetic condition, and one that is widely misunderstood, writes SHEILA WAYMAN.
EIGHT-YEAR-OLD Caleb Judge has to be “reprogrammed” every day, says his mother, Melissa Keeley. It’s like he has forgotten everything he’s learned.
He’s likely to put his school uniform on backwards, or might put on two pairs of underpants. He has to be reminded to eat breakfast; if he’s asked to go to the bathroom to brush his teeth, he’ll probably forget what he was sent to do as soon as he steps out of the kitchen.
“You have to stay with him and supervise him all the time,” she explains. This inability to concentrate and flitting from one thing to another is typical of a child with Attention Deficit Hyperactivity Disorder (ADHD). He is also very bright and loving.
They try to keep Caleb in a step-by-step routine from the moment he wakes up. School holidays are a chaotic time, says Melissa, as he is easily bored.
When Caleb was two, she first felt there were “issues” and that his behaviour was “beyond the norm” for a toddler. He then caused “mayhem” when he went to Montessori.
By the time his junior infants teacher was describing him as the boldest child she had taught in 25 years, Melissa was seeking professional help. “You think you are a very bad parent, although you are doing everything by the book.”
Like many parents in her situation, Melissa felt almost a sense of relief when Caleb was diagnosed with ADHD. At last there was a name and a reason for the inexplicable, wild behaviour.
The condition is caused by a chemical imbalance in the brain, which affects concentration; it can make children impulsive, easily angered and aggressive. About 4 per cent of children have some sort of ADHD problem; for 1 per cent it’s a severe problem. Treatment options include medication and behaviour modification therapy, which teaches the children how to cope with their impulses.
Early diagnosis of this neuro developmental disorder is crucial. If it is not picked up, the child’s life can quickly spiral downwards as he or she gets into trouble at school, is unable to make friends and self-esteem plummets. Untreated, it increases the risk of mental illness later in life.
Of course there are still sceptics who suspect that there is nothing wrong with so-called ADHD children that effective parental discipline would not sort out.
“ADHD is real,” is what a world-renowned authority on the condition, Prof Eric Taylor of King’s College, London, assures parents of affected children. “There is often a lot of guilt and confusion.”
It is a biological condition for the children and isn’t the parents’ fault, he stresses, but parents can do a lot to help. “While there are medical treatments and the pills help, there is a lot that can be done before you get to that stage and quite often will make the medicine unnecessary.”
It is primarily a genetic condition. “About 80 per cent of the influences on ADHD are genetic but there is plenty of scope for the environment to play a part,” says Taylor, who is now Emeritus Professor at the Institute of Psychiatry in King’s College London, where he was head of Child and Adolescent Psychiatry.
The 1 per cent of children who have severe ADHD are probably going to need medication right from the start, says Taylor, who is giving two talks in Dublin next month.
For the other 3 per cent of children, there’s a choice. “You can sometimes find that doing it the psychological way is enough and it usually makes sense to start that way and then come in with medication if it’s not enough.”
While severe ADHD is always a problem, difficulties caused by ADHD at mild levels can depend on the context. “There might be two children with mild ADHD and one of them is in major trouble everywhere and everyone hates him and he’s doing badly, and the other is doing just fine and flying and people like his sparkiness.”
The way people behave towards a child with ADHD can make a huge difference to whether the condition is allowed to become an impairment, explains Taylor. Teachers who understand it can be a great help with mild cases.
“Quite a lot of the teenagers say to me it’s a bad problem and they really don’t like having it, but what makes it worse is the way people react to it,” he says.
Caleb was six before he was psychologically assessed for extra support at school. Meanwhile, Melissa and her partner, Desmond Judge, had had a second son, Senan, who was born with a physical disability.
Melissa gave up her job as a travel agent to care for the two of them and the family decided to move from Drogheda town to a more rural area of Co Louth, Walshestown outside Dunleer, partly in search of a smaller school for Caleb. He now has a special needs assistant at his new school and he is doing “amazingly well”.
St Paul’s National School has been “fantastic”, says Melissa, and she can’t praise his teacher, Edel Sherman, highly enough, along with his special needs assistant, Mags. The fact that the school is mixed also helps, she believes. “He feels girls are a lot more sensitive and stick up for him.”
Taylor has devoted his career to trying to reach a better understanding of the condition and so improve diagnosis and treatment.
“We do think the medicines strike quite close to the cause but they’re only working when the medicine is actually in your system. We think there are chemicals in the brain that are being removed too quickly in ADHD, they are being turned over too quickly, so there are parts of the brain that are underactive.
“What the medicines are doing is restoring that function. So it is getting quite close to what the problem is but it’s not a cure because it only lasts as long as the medicine is in the system. If you stop the medicine, you go back to square one.”
A child can partly grow out of the condition, as well as learn to cope with it, he explains. The under-functioning parts of the brain are following normal development but lagging a few years behind, “so, for many, many people, you get to the level where you have caught up for most practical purposes”.
It is widely acknowledged that Taylor’s research has changed the way ADHD is treated. “I think it indicated what the drugs are doing so we know how to use them better. And it indicated the scope that there is for psychological treatment as well.”
Providing it is not a severe problem, the preference should be to try psychological treatments, he says. “If it is a severe problem, what we have found is that it really does not matter too much what you try to do unless there is medicine in the system because people are not going to be able to respond to it.”
Although no drug is completely safe, he advises parents of children with severe ADHD not to be averse to medication for their child. Some parents “are very scared of it and I do see some very sad cases where kids’ lives are going down the tubes and it’s all so avoidable because they could be helped a lot ” .
One of the first in Britain to advocate medicine for the condition, Taylor says “it was very unpopular at the time, among colleagues and the liberal media community”. Now he finds himself in the reverse position of “advocating medicine rather less than most of my colleagues”.
Overdiagnosis of ADHD has been a problem in the US, he agrees, but on this side of the Atlantic it has tended to be the other way round.
“More often opportunities are missed for helping these children because other aspects of their behaviour are addressed and the underlying ADHD is not recognised.”
It’s still not known why boys are more likely to have the condition than girls, in a ratio of up to 3:1.
“How far the roots of that are in the genes and how far in the different way boys and girls are treated is a mystery. I think it may be something to do with boys being more liable to damage in the womb – because if you take children who have been damaged in the womb, that boy/girl difference disappears completely.”
He also points out that most girls are more attentive than most boys and more controlled than most boys, “which is another mystery”.
While children are born with the condition, it’s only when they reach the stage of development that they need to be showing sustained attention that the lack of it becomes a problem. That is usually when they start national school and parents are then frequently summoned for talks about their disruptive child.
“I would like to see more support for parents because parents can make a lot of difference,” says Taylor, who has been invited to Dublin by the Lucena Foundation to deliver a Masterclass on ADHD for clinicians on February 10th (which is completely booked out). But he is also giving a talk for parents the previous day.
“One thing we found when following children over time is that if parents could stay warm and good-humoured towards the child, it made a real difference to whether the children went off the rails in an anti-social sort of way.”
However, he knows that this can be hard for an overstressed parent dealing with a very difficult child.
Parents need information, he adds, “they need the support of services, they need the support of each other, they need user groups and they need to learn what the skills are in how you keep order in the home in a dispassionate kind of way”.
The HADD Family Support Group for ADHD in Ireland is dedicated to providing such information and support. ADHD is a hidden disability and it’s “very, very tough on everyone involved”, says the chairwoman of HADD, Stephanie Mahony. If it was more widely understood, other people might be more compassionate and sympathetic towards affected children and their parents, she suggests.
She was lucky, she says, that her son was diagnosed at the age of three, nearly 20 years ago, and has gone on to do very well. Fortunately, his condition was identified by a paediatric neurologist, who had worked in Canada, at a time when there was relatively little information available here about ADHD.
It is volunteers like Mahony who run HADD, knowing what a huge help it is to parents to be able to turn somewhere for information and advice, and talk to other parents coping with similar situations. They also provide a resource for teachers wanting to know more about the condition.
“It is not all doom and gloom,” she stresses. Indeed, some of the typical characteristics of the condition can be very positive, such as a high IQ, quick reactions and a fearlessness, which can help make good entrepreneurs, adventurers or performers. The rollcall of many famous people believed to have had ADHD include Einstein, George Bernard Shaw, Winston Churchill, John F Kennedy, Robbie Williams and Richard Branson.
Mahony advises parents who suspect their children might have ADHD, or who have recently been diagnosed, to educate themselves about the condition.
“Use your own instinct,” she adds. ADHD cases “are all different and it’s important parents realise that and decide what’s best for their children”.
After Caleb was first diagnosed, they tried putting him on the drug Ritalin but “it didn’t suit him and his behaviour became more extreme”, although Melissa has seen other children for whom it works.
He takes fish oil now and she went on a course for parents with ADHD children, which, she says, was a huge help in learning how to cope with him at home. There are good days, when she sees patient, positive reinforcement of good behaviour pay off, then there are bad days – “days I want to crack up because of the incessant talking and the challenging behaviour”.
His rare quiet moments include when he’s watching TV programmes about wars on the History Channel. War and soldiers are his big obsession. “He knows more about the first and second World Wars than me!”
She can’t go out with the children to a restaurant as Caleb would be shouting out, or crawling under the table pretending to be a dog. Although Melissa is past the stage of worrying about disapproving looks for others, she does worry about the effects on Senan, who sees all this “totally inappropriate behaviour” by the older brother he adores.
It’s the days when Caleb is running off with the supermarket trolley, with Senan in it, and knocking into older people, or shaping up to her, or refusing to eat his favourite dinner, that she wonders where she would be without various, valuable outside supports. She is now involved in the fledgling Drogheda ADHD support group.
“It is very hard to love an ADHD child unconditionally when sometimes you don’t like them,” she candidly admits. “But I do love him to bits.”
- Prof Eric Taylor's talk for parents on 'Managing the Problems of ADHD' will take place on Monday February 9th at 7pm in the Lucena Clinic, 59 Orwell Road, Rathgar, Dublin, 6. Admission is free but places must be booked, by e-mail to marie.mccourt@sjog.ie or telephone 01-4923596.
- For more information about the HADD Family Support Group, see www.hadd.ie, or tel 01-8748349, which is manned on Wednesdays and Fridays.
- For more information on the Drogheda ADHD group, tel 041-9846614.