Psychiatrist on Fetal Alcohol Syndrome: “The normalization of alcohol is a problem”

taz: Ms. Wolter, should everyone know what FASD is?

Heike Wolter: Yes. But not even all doctors know the full extent. Fetal Alcohol Spectrum Disorders are not a rare disease. It is estimated that at least 1 percent of children born are affected. This means that around 7,000 children with FASD are born in Germany every year - a conservative estimate.

is a specialist in child and adolescent psychiatry and leads the special consultation for children and adolescents with FASD at the Berlin Charité. There are currently no consultation hours for adult sufferers.

taz: FASD is considered the most common congenital and incurable disease.

Wolter: ... and is still underdiagnosed. And as is almost always the case in medicine, there are far-reaching consequences if a diagnosis is not made. A lot has happened in recent years, but both doctors and the general population continue to need consistent education.

Wolter: These are congenital brain damage caused by alcohol. The symptoms vary, which is why we speak of a spectrum disorder: This ranges from difficulty concentrating to growth disorders, unusual facial features, intellectual disability and severe developmental and behavioral disorders. What they all have in common: certain brain functions are fundamentally disturbed. This means that the hardware of the brain is impaired and not – as is often the case with mental illnesses – the software.

taz: Are we talking here primarily about the children of alcoholic mothers or is just a glass of wine in early pregnancy enough for FASD?

Wolter: It is certainly the case that high and constant alcohol consumption during pregnancy is particularly harmful. But in reality, we simply don't know what consequences even a single glass of wine can have. The fetal brain develops throughout pregnancy and is extremely sensitive. And especially in early pregnancy, the embryo has no opportunity to metabolize the neurotoxin alcohol. We cannot say whether there is a threshold for how much alcohol is harmful. Therefore, we have to assume that even one glass of wine can be harmful.

taz: It's hard for women to admit that they have harmed their children by drinking alcohol.

Wolter: This is a very important topic in diagnostics. Almost all caregivers who come to me for diagnosis and care with children or young people are foster parents, adoptive parents or professional carers from residential facilities. But I also have some birth mothers here who say: “This happened to me, but I have to be able to help my child appropriately now.” And I think it's really important that these women are protected to some extent. Because the normalization of alcohol consumption is a social problem and not just a problem for these women. In a way, it's just undesirable that alcohol can be so toxic. This stands in the way of a comprehensive diagnosis.

taz: But not all children whose mothers drank alcohol during pregnancy have impairments, right?

Wolter: No. In a 2011 survey, 20 percent of mothers surveyed said they had consumed alcohol during pregnancy. These numbers shocked even me. But not all of the children born develop FASD. And how severe the symptoms are and what accompanying illnesses also depend on what additional psychosocial problems the child is born into and what the genetic makeup is.

taz: What specific problems do children and young people with FASD have?

Wolter: There are different areas in which disorders can occur: language development, motor development, learning and memory abilities, social skills and very importantly: the so-called executive functions. Planning and structuring actions, distinguishing between what is important and unimportant - these are the skills we need to cope with our everyday lives and to live independently. It has to be said that most people diagnosed with FASD cannot do this. According to older studies, only around 20 percent are able to live completely independently as adults.

taz: At what age do the children come to you?

Wolter: The majority are of kindergarten and early primary school age. But unfortunately there are also many who only come as teenagers. Most of the time they have already had an odyssey behind them.

taz: How is the diagnosis of FASD received? After all, the disorders cannot be cured...

Wolter: I see tears of relief because there is finally an explanation for the many difficulties. But I also see tears of despair because this won't go away. This affects the patients and their caregivers. It is often understandably difficult, especially for adoptive parents, because their ideas that were associated with the desire to have children break down.

taz: People with FASD only notice their illness in severe cases, and their intelligence is often in the average range...

Wolter: On the one hand, this is of course good news and, with good care, it also increases the chances of an independent life. On the other hand, the invisibility of the impairment makes it more difficult. Society, the pension offices and even the schools are quick to make attributions: the person concerned just needs to try harder, is just lazy and so on. This devaluation and the daily failure at things that others can easily do - that causes a lot of suffering and also makes treatment challenging.

taz: What is your goal in the long-term care of those affected by FASD?

Wolter: My ultimate goal is to reassure patients that they are okay as they are as people. That they have an impairment, but are not that impairment. Then it's about treating accompanying disorders as best as possible. Drug treatment plays a major role here. We also work to ensure that patients receive relief and support, for example at school. And that they become as independent as possible.

taz: If many children were previously and still undiagnosed, then there must also be a lot of adults with undiagnosed FASD?

Wolter: Absolutely. Especially when you consider that the disease only became more widely known in 1973, when it was named in the USA. Before that, mothers usually didn't know that alcohol could cause such damage during pregnancy. I also often see mothers of children with FASD who I suspect have FASD themselves.

Wolter: The problem is that the adults are poorly looked after. This applies to both diagnostics and long-term care. We have to assume that a lot of people with undiagnosed FASD end up in prisons, in psychiatric hospitals and on the streets.