Children with ADHD are seldom heard, but it is their insights into the condition that should guide the way we treat them, says Ilina Singh
It has to move, it has to get out. It has like a hundred arms and legs and it's punching at me from the inside. It feels like there's this alien inside me."
This is the voice of a child with attention deficithyperactivity disorder (ADHD). Although this is the fastest growing child psychiatric disorder in the world, the voices of the children affected are seldom heard.
Experts argue whether ADHD is a matter of nature (genes, brain chemistry and neuroanatomy), or nurture (parenting, schooling and culture). This unproductive debate is particularly passionate in the case of ADHD because most diagnosed children are treated with drugs. But there is almost no existing research that brings the voices of children to bear on our understanding of what ADHD is and what psychostimulant treatment does.
We need to know how they feel because, whatever the cause of these children's problems, the most important thing is to help them succeed.
Interviews we carried out as part of research funded by the Wellcome Trust (visit www.addingvoices.com) and a consulting project for the National Institute for Clinical Excellence ADHD Diagnosis Guideline provide important insights.
We found that, even when a child is on medication, ADHD can be an uncontrollable physical experience.
Sometimes children with ADHD need to move around in ways that are not possible inside the classroom, and the effort it takes to contain themselves makes it impossible for them to focus on classroom work. Children speak gratefully about teachers who develop creative, non-punitive strategies that allow them to temporarily unleash the "alien".
Some teachers send children into the corridor or to the sports hall; one teacher allows an 11-year-old boy to visit the school's reception class where he can move around more freely. Children who discuss strategies with their teachers before they are implemented also feel supported and included in the classroom context.
Some teachers, it emerged, are unknowingly contributing to the stigma surrounding ADHD and drug treatment. One girl says: "If I'm not listening or I'm throwing things, she (the teacher) will say: 'Did you take your medicine?' She says it in front of everyone. She's given up on me. Everything I do that's bad, she thinks it's because I haven't taken my medicine."
It is possible to support children with ADHD-type behaviour without shaming them. Medication is by no means a panacea; it helps children with ADHD better control their behaviour, but many will still struggle more than the average child.
Children with ADHD frequently report being bullied at school. "They call me 'mental' and 'sicko' and 'druggie' (because of having to take medication for ADHD)," says one boy. "I'll start fighting them, but sometimes my friends hold me back. They know I'll get into trouble for it."
But the children don't think teachers are aware of the bullying. When teachers do get involved, they say, they often blame the fighting on the child's ADHD, rather than on the real source of the problem: the bullying.
Friendships emerge as a key protective factor for children with ADHD. Yet many have trouble making friends. When these children do have friends, they report higher levels of self-esteem and less fighting. Teachers can encourage supportive friendships and they can watch for stigmatising bullying that results in fights.
Children also remind us that physical play is an important part of childhood - and that behaving "badly" can feel good.
"I know it's wrong and everything, but fighting feels good. It's powerful and energy," says one boy.
Schools provide too little playtime and the kind of play allowed is restricted. Children with ADHD may need the outlet of physical play more than other children, but they are also more likely to receive punishments that involve a loss of playtime. This is not just bad for the child, it's bad for the teacher and the classroom. Teachers should find more active punishments for children with ADHD, such as cleaning up lunchrooms or classrooms or gym equipment, or requiring children to do press-ups or star jumps.
There is clearly insufficient acknowledgement by adults of children's (especially boys') pleasure in rough, physical play.
Providing support and discovering creative outlets for pupils with excess energy who have trouble with focus and attention will benefit most school-age children, not just those with a diagnosis of ADHD
Ilina Singh is a Wellcome Trust university lecturer in bioethics and society at the London School of Economics and Political Science
Diller, L. (1997). Running on Ritalin. New York: Bantam Books
Singh, I. (2007). Clinical implications of ethical concepts: The case of children taking stimulants for ADHD. Child Psychology and Psychiatry, 12(2), 167-182.