Children with hyperactivity problems do not feel that Ritalin and other drugs they are given turn them into zombies or robots, but say they feel the medication helps them control their behaviour, according to a study that has asked for their views, in what is claimed as a first.
Dosing children with stimulants to control angry, aggressive or overly-impulsive behaviour has excited controversy for many years. Critics say medication is the wrong way to go and that ADHD (attention deficit hyperactivity disorder) is an extreme form of normal behaviour that needs understanding and psychological therapy rather than drugs.
But, said biomedical ethicist Dr Ilina Singh from Kings College London, author of the research, nobody has asked the children themselves.
Her work, published as a book and an animated film to help inform the debate around the drugs, was funded by the independent Wellcome Trust. It offers insights into the feelings and experiences of children with ADHD and reveals, worryingly, that they are often bullied at school and that doctors do not talk to them about their condition as much as they would like.
The drugs, said Singh, are not the only answer – she would like to see research into meditation and other alternatives for the children – but “the assumed harms of stimulant medication were largely not supported by this study,” she said, although she added: “This is is no way a blanket endorsement of stimulant drug treatment.”
Children said the drugs gave them a time and space to consider their reaction to things that could make them behave aggressively. “They said what a great thing it is to have a bully come up to you in the playground and not react impulsively but have a moment to think, ‘what do I do next?’,” said Singh.
The children also talked about the downsides of medication. A small group felt the person on the drugs was not their authentic self. “I didn’t feel like myself when I was taking the medication,” was one comment, and “I was too quiet; it wasn’t me.”
“One of the messages that children have is that they want more treatment options outside of medication, but they aren’t available,” said Singh. “There are long waiting lists for any kind of behavioural treatments for kids.” But drugs, she said, are “absolutely not the only treatment we should be focusing on.”
The Voices (voices on identity, childhood, ethics and stimulants) study involved detailed interviews with 151 children aged 9 to 14 and their families in the UK and the United States. They were from three groups – children diagnosed with ADHD and on medication, children with a diagnosis who were not on drugs and children with no psychiatric diagnosis.
In the US, the drugs were most likely to have been prescribed to improve children’s school performance by helping their concentration.
Ian, a 12 year-old in a lower-middle-class suburb of a major east coast US city, has been on a variety of drugs for ADHD in the last three years. “I forget things a lot and I have trouble focusing and being mature,” he told researchers. “That means I’m not doing my work like I’m supposed to. The last time I felt good about my behaviour was when I got all Bs and Cs on like my gradecard, except for one D. That was a few weeks ago. My mom freaked out she was so happy. I want to keep doing better.”
UK children were diagnosed because of disruptive or difficult behaviour. Shaun, 11, lives in a large village on the outskirts of a small city in a lower-middle-class neighbourhood where his parents grew up and other family still live. He has been on stimulants for more than two years.
“It’s like sometimes I feel really cross with other people and I just want to go lashing, lashing out,” he said. “[Other children at school] know they can wind me up easily so they do it again and again and I can’t walk away that easy … if I get punched, I have to fight back. Teachers are not effective. They don’t help. In the future I guess I want to be less naughty.”
The research found a lot of stigma attached to ADHD. Children in the US tended not to tell people they were diagnosed. Children in the UK, among whom issues of aggression and anger made it more obvious, often reported they were bullied as a result.
“Their peers will go out of their way to wind up the child they know has difficulty managing their anger or aggression,” said Singh. US children would make jokes and tease those with ADHD, but actively attempting to make another child lose control was a particularly British thing, the research found.
Children reported little meaningful conversation with their doctors and said they did not understand their condition or why they were taking drugs. Check-ups focus on weight and side-effects and there is little discussion of how they are coping with their lives.
That needs to change, said Singh. “Given the ethical concerns that arise from ADHD and stimulant drug treatment, it is imperative that children are able to openly discuss the value of diagnosis and different treatments with a trusted professional,” she said.