The rise of the alphabet kids

When Lisa Jordan's son Daniel began experiencing social problems at play group, a specialist concluded that the boy was suffering from an autistic spectrum disorder (ASD). At 7, his behavioural difficulties led him to a paediatrician, who diagnosed attention deficit hyperactivity disorder (ADHD).

Now 10, Daniels suffers long, wakeful nights and serious tantrums. Health professionals have suggested that he also has sleep disorder (SD) and oppositional defiant disorder (ODD). Daniel is an "alphabet kid", one of a growing population of British children with a trail of diagnostic letters after their names. But does a clutch of acronyms help or hinder?

No central figures are held on the number of children in Britain with mixed behavioural diagnoses, but Colin Troy, a Lancashire-based educationalist who has worked with children with special needs for 30 years, says: "They have been around for some time and are definitely on the increase. It used to be thought that you could not have a student with conditions such as Asperger's and ADHD overlapping, but that belief has completely changed." Indeed, a recent report in the Journal of Autism and Developmental Disorders found that half of the children with autism studied also had hyperactivity symptoms.

Research in the Journal of the American Academy of Child and Adolescent Psychiatry found that ADHD often occurs alongside disorders such as ODD and conduct disorder. Another study, led by Simon Baron Cohen, a professor of developmental psychopathology at the University of Cambridge, found that children with autism have a raised risk of Tourette's syndrome.

Robbie Woliver, the American author of the recently published book Alphabet Kids: From ADD to Zellweger Syndrome, claims that millions of children in the US (including two of his own) are "plagued by clusters of disorders". The numbers are rising, he says, "because of growing awareness, ongoing strides in research and improved diagnosis techniques. And because so many alphabet kids are just beginning to be included in published studies, the rates will rise even more dramatically."

In Britain, the Department of Health cites 2004 research indicating that one child in ten has at least one clinically diagnosable mental disorder. But the figures seem to be rising fast. For example, a report last July produced by Wandsworth Primary Health Care Trust in Southwest London revealed that cases of autism in its area had risen from 161 in 2001 to 448 in 2007. Countless others are on the fringes of the diagnosis, according to a study last month by the UK's Institute of Child Health in the Journal of the American Academy of Child and Adolescent Psychiatry. Professor David Skuse, one of the researchers involved, says that many children exhibit elevated levels of autistic traits, and that "our research suggests that these children are at slightly greater risk of developing behavioural and emotional problems".

Lisa Jordan, who lives in Southeast London and cares full time for her son, hopes that growing awareness of multiple behavioural conditions could help to reduce some of the stigma that she feels is associated with her situation. "A lot of professionals are supportive and interested, but I definitely get the impression that others think I've been out shopping for Daniel's diagnoses because I'm either needy or neurotic."

But Colin Troy, who has worked as a head teacher at two special schools, says that there can be pitfalls in multiple diagnoses: "The difficulty for the parents is that it can be very confusing. They may see one professional who has a bee in his or her bonnet at the time about a certain condition, and will say that's what the child has got. Then the parents will see another specialist and are given another diagnosis, and so on.

"As more and more children develop these overlapping conditions, new spectrum disorders are turning up, such as 'sensory interpretation dysfunction' and 'pathological avoidance dysfunction'.

"The argument against multiple labels is that we are offering lots of medical excuses for children's behaviour, because they have 16 letters behind their names. I work with parents, health professionals and teachers. "I tell them, 'Never mind the labels'. These children are people first, then they are these characteristics. Sometimes when talking to groups, I literally cover myself with sticky labels to reinforce the point."

But why are such disparate diagnoses growing exponentially? One possible explanation is that we notice maladies more readily. Before the advent of the NHS in 1948, many families were reluctant to pay for medical help for anything other than serious contagions such as typhoid and tuberculosis. Behavioural disorders featured far less on the diagnostic radar. A related argument says that our increasingly made-over society is less tolerant of difference and more keen to diagnose and medicalise "unnormality". This may lead to parents seeking a multiplicity of different conditions to explain their children's aberrant conduct, says Troy. "Some parents don't want their children to have conditions associated with learning disorders or extreme behaviour problems diagnosed.They are looking for more medical labels, so that they can say, 'It's not just autism'. They are looking for more specific reasons."

Aggressive marketing by drug companies "is absolutely a contributing factor" to the rise in behavioural problems, according to a report published last May by researchers at Brown University, in Rhode Island. They say that their evidence indicates that fewer than half of the patients who had bipolar disorder diagnosed actually suffered from the condition. The lead researcher, Mark Zimmerman, told the British Medical Journal: "You cannot go to a meeting on bipolar disorder that doesn't have a big discussion right at the start about how underdiagnosed this illness is and how doctors need to ensure that patients are treated. These meetings are usually sponsored by drug companies, and I think that they must be having an effect on doctors." Clinical updating meetings for doctors in the UK are likewise sponsored by drugs brands.

Ellen Leibenluft, who runs the paediatric bipolar research programme at the National Institute of Mental Health (NIMH) in Maryland, also believes that overdiagnosis and misdiagnosis are becoming rife. In her studies at the NIMH, only 20 per cent of children identified with bipolar disorder were found to meet the strict criteria for the condition.

Woliver acknowledges that many alphabet disorders can be so blurringly amorphous that they can blend into a kind of diagnostic soup. They "have similar symptoms, some are even interchangeable and most interconnect", he says. But he adds that each mix creates a child with unique problems and biological causes. And these causes, he claims, often originate in allergic reactions.

"There needs to be some sort of predisposition in the child for factors such as toxins or vaccines to have their ill effects. We must continue supporting research studies that determine why these disorders are so prevalent and growing exponentially, how they are related and how to cure or treat them."

Another contributing factor to the proliferation of alphabet behavioural diagnoses may be 21st-century lifestyles. Professor Jim Horne, of the Sleep Research Centre at Loughborough University, says that children aged 5 to 8 are particularly vulnerable to sleep problems as a result of "electronic distractions" such as computers and mobile phones in bedrooms. "Children who persistently go to bed late get into hyperactive states and learning becomes a problem at school the next day," he says. Research indicates that up to 20 per cent of children who have midle ADHD diagnosed may in fact be suffering from a regular shortage of sleep.

One worry, though, is that drug treatment for one psychiatric condition may set off another problem. For example, a study in the journal Bipolar Disorders in 2005 reported that children given antidepressants go on to develop a bipolar disorder at an earlier age (at 10, on average, rather than 14), and with greater severity, than those not prescribed such drugs. The physical side-effects of treatment may cause long-term problems, too: a book published last month, The Metabolic Effects of Psychotropic Drugs, says that antipsychotics and antidepressants can cause weight gain and possible type 2 diabetes.

Although multiple diagnoses can prove problematic, Troy stresses that we should also acknowledge that they can be helpful: "There is a balance to be struck. All of these different associated conditions are real and they are specific, and from a parental point of view they may be helpful signposts to specific interventions. If a child has a kind of Asperger's that also involves semantic pragmatic difficulties, then the way in which we work with that should be in terms of language and communications because it's more precise."

But Troy, who runs his own consultancy, CT Training, believes that the best support for alphabet parents such as Jordan often lies in diverting some of their attention away from the world of health professionals, drug companies and multiple medical labels. "I'm keen to help these parents to form their own self-help groups.," he says. "The sort of 'I've been through that' advice that they can offer each other is often the best of all." source>>>

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