This article was published in issue Y/06/16 of Yliopisto magazine.
A girl, daydreaming at her desk, is startled awake when the teacher calls her by name. Oh dear, was she ignoring the teacher’s instructions again? Meanwhile, a middle-aged mother of two is agonising over her seemingly overwhelming tax return, just hours before the deadline. It seems so difficult to get started on this unpleasant but necessary chore.
Either of these examples could be taken from the lives of many “normal” people. However, they will ring particularly true for people living with attention deficit hyperactivity disorder, or ADHD.
“Everyone has trouble focusing sometimes, and starting on unpleasant tasks can be a struggle. Many also behave impulsively on occasion. It’s only considered ADHD if the symptoms are persistent and cause significant problems," says Sami Leppämäki, psychiatrist and researcher at the University of Helsinki.
If ADHD is suspected, the doctor will first monitor the patient for nine attention deficit symptoms and nine hyperactivity ones. If the patient exhibits at least the set minimum number of significant symptoms, if they began during childhood, and if they cannot be attributed to any other disorder, the doctor may arrive at an ADHD diagnosis.
Not a result of upbringing
ADHD is a complex developmental disorder of the brain. Diagnosed ADHD sufferers typically have a thinner cerebral cortex and abnormal cortical folding. Similarly, the neurotransmitters which regulate attentiveness, activity and cognitive control, or the ability to plan one's actions, do not function normally. People with ADHD symptoms have lower levels of dopamine, for example.
The neurological abnormalities are largely hereditary. According to studies, up to 70–90% of all cases are attributable to a genetic predisposition. ADHD is one of the most hereditary psychiatric disorders.
Smoking, using alcohol or drugs, stress and hypothyroidism during pregnancy may also render the child susceptible to ADHD. Similarly, complications during childbirth, such as severe oxygen deprivation or premature birth, increase the risk of ADHD. Environmental toxins have also been thought to contribute.
“This is to say that the disorder is not related to upbringing, unlike many believe. However, upbringing and the right kind of support can alleviate the symptoms of the disorder,” Leppämäki points out.
Can medication help?
Often the diagnosis comes as a great relief to the patient and his or her family. Difficulties at school, work and in relationships are explained, and solutions can be sought.
For children under the age of seven, treatment of the disorder typically involves a variety of support measures and therapies as well as education for the parents, but no pharmaceutical prescriptions. The child’s life will be structured in a new way. At day care, instructions may be given in different forms.
For school-age children and adults, drugs are often offered alongside other therapies, particularly if the symptoms are severe. Finding the right prescription is a question of trial and error. The same kind of medication does not suit everyone.
“It's difficult to predict who will benefit from drugs and who will not. We just have to try and see. Most patients do benefit from medication. In some cases, the symptoms may disappear almost completely,” says Laura Korhonen, child psychiatrist at the Helsinki University Central Hospital.
Some children diagnosed with ADHD will become asymptomatic, or nearly so, once they reach adulthood. Just under a half of the patients can stop treatment altogether.
Daydreamers and troublemakers
But what of the daydreaming girl? A child calmly sitting at her desk may not correspond with the mental image many people have of someone with ADHD. The more common ADHD stereotype is a boy who can’t sit still and disrupts the class.
“There is another form of the disorder, ADD. That means an attention deficit disorder without hyperactivity symptoms. In ADD, the problems lie in attentiveness and cognitive control,” Korhonen explains.
Typically, children are diagnosed with ADHD in preschool or during their first school years. In contrast, children with ADD are quieter, and their disorder is often only noticed at the end of primary school, if even then. Hyperactivity is more obvious than attentiveness disorders. Concerns often only arise if the child is so lost in daydreams that he or she is not performing at school as expected. The suggestion to seek a diagnosis often comes from the preschool or school.
“The demands at home are different from school or preschool, so the symptoms are less apparent. A teacher may start to suspect a disorder if he finds himself struggling more than usual to help a pupil. Instructions must be constantly repeated, and the child needs more reminding and motivating than others,” Korhonen explains.
She points out that unlike what many believe, ADHD does not mean a complete lack of the ability to concentrate. Someone with the disorder may become completely immersed in a thing he or she finds interesting.
Other ADHD symptoms, including hyperactivity, may escape diagnosis if there are other problems in the family, such as substance abuse issues. In such cases, all symptoms in the child may be attributed to parental problems.
A family problem
“A child with ADHD means that the family will be facing a veritable gauntlet of bureaucracy. In the best – or worst – case, the family may be involved in consultations with more than a dozen experts, from teachers and doctors to therapists and social workers," says Erja Sandberg, who defended her doctoral dissertation on education in May at the University of Helsinki.
She believes that the most significant authorities in terms of the child and the family are the class teacher, or a special education teacher if applicable. They are the ones who interact with the child almost daily.
Sandberg regrets that not nearly all class and subject teachers have the tools necessary for working with ADHD. Studies in special education are not a compulsory part of teacher education. Many teachers have turned to continuing education to supplement their competence.
Families have reported a wide range of different experiences in their encounters with officials. The experiences may vary wildly even within a single municipality.
“It’s up to chance whether the official who is meeting with the family understands the syndrome. Some are familiar with the disorder, while others may have false preconceptions. Most of the complaints from families regard social work. Many families have reported that they have been denied support if their child has no physical somatic symptom disorder or a visible disability.”
This does not mean that the family does not need support, particularly if there is more than one person with symptoms in the home. The family may become dysfunctional if no help is forthcoming.
According to a study from the Finnish National Institute of Health and Welfare, the risk of divorce doubles if the couple has a child with ADHD.
Forever in second place
The disorder will also take a toll on the relationships between siblings. When one child gets a great deal of attention, other children in the family may feel they are pushed to the side lines.
According to Sandberg, the siblings usually understand the family’s situation well. They will try to stay out of the way and to help their parents. However, the children without symptoms also deserve attention. In the words of one such child: it would be enough to have some time alone with at least one parent once a week.
Timo Harrikari, professor of social work at the University of Tampere, recognises that not all social workers are sufficiently familiar with ADHD. He believes that social workers' competence may be lacking, particularly in small localities. In larger cities, the situation is different. For example, Tampere has the city-maintained Nepsy support team, which helps families with neuropsychological issues.
The amount and quality of the support is not just up to the competence of the social workers, Harrikari points out. Political choices and resources available to municipalities also play a role.
“Research and education in social work has largely ignored ADHD, even though it is tangentially relevant to the field. There are more people with ADHD symptoms among our clients than in the population on average. For example, some estimated numbers of ADHD sufferers among the prison population are astoundingly high.”
According to Harrikari, it is unwise for a social worker to ignore the client's ADHD diagnosis.
“The social worker should at least understand the labyrinth of financial support criteria that the person can be lost in," he specifies.
High figures in the US
According to studies, 4–8% of all Finnish children between the ages of 6 and 18 have ADHD. However, other countries have very different ADHD numbers. For example, it is estimated that more than 10% of children in some parts of the United States have ADHD.
“It is possible that some children diagnosed in the US would not receive a similar diagnosis in Finland. Here, the diagnosis is primarily made by a specialist. This means that the diagnosis is more reliable. On the other hand, American culture may be more sensitive to deeming abnormal behaviour problematic than ours,” Laura Korhonen muses.
She also cites the American health insurance system as a factor for the high figures: ADHD drugs are most commonly used by native English-speakers with health insurance, i.e., the segment of the population which can afford the high insurance fees. It is also significant that in the United States, ADHD drugs are marketed directly to consumers.
Korhonen points out that overdiagnosis of ADHD is not without its risks. Restlessness may be caused by trauma, family problems or depression. The real reason underlying the symptoms may remain untreated and the patient left without the help he or she needs. At the same time, the family is buying expensive drugs for no reason.
Help for adults
It is very common that a child diagnosed with ADHD will also have a sibling or parent with the disorder.
“ADHD is underdiagnosed among adults. It may be that the family has a child with ADHD symptoms who is being treated, but a parent with similar problems has never received help,” Sami Leppämäki explains.
He makes an educated guess that approximately one per cent of the working-age population are living with an untreated attention deficit disorder. In Finland, this translates to more than 30,000 adults.
Diagnosing adults with ADHD is made more difficult by the fact that the hyperactivity typical of the disorder is often alleviated or disappears in adulthood. Conversely, difficulties with concentration and cognitive control become worse, making it increasingly difficult to start and complete unpleasant tasks.
ADHD can be a fatal disease if untreated. In adults, the disorder is often accompanied by other mental problems, such as substance abuse, depression, eating disorders or anxiety, says Leppämäki.
Public health care in Finland began to treat ADHD in adults in the early 2000s. Leppämäki himself was involved in the establishment of the adult neuropsychiatric clinic at the Helsinki University Central Hospital in 2004.
“Doctors working in basic health care are increasingly aware of the disorder. This is also apparent in the statistics. The amounts of drug reimbursements provided by Kela, the Social Insurance Institution of Finland, prove that more diagnoses are being made,” Leppämäki states.