Christopher Gillberg on the importance of being earnest in clinical research
“If there’s one thing I want to recommend to younger researchers, it is to always also stay clinically involved. I have never ever been entirely out of the clinic.”
So says Christopher Gillberg, as he walks up and down the stairs of the central Gothenburg building, where both the Gillberg Neuropsychiatry Centre - belonging to the Sahlgrenska Academy and the University - and parts of the University Hospital’s pediatric psychiatry department are located.
Meet the University Hospital Chief Physician and Professor of Child and Adolescent Psychiatry, who for more than forty years has been involved in clinical work and research focusing on autism, ADHD and related neurodevelopmental/psychiatric disorders.
What are the most common misunderstandings about these diseases that you work with?
“One of the most common misunderstandings is precisely that - that they are diseases.”
OK, that seems obvious.
“Yes, but it is really hard to find a suitable word for these problem groups, or whatever you want to call them. They are often called conditions, other times neuropsychiatric disorders or disabilities. Sometimes we refer to them as neurodevelopmental disorders.
There’s probably no other area with so much language confusion and constant changes to terms and labels. I think that this has a lot to do with there being historically a creation of myths around the problems with “the psyche”. People used to think that it was a punishment from God and have had all sorts of strange approaches to explain why people have mental health problems.
There have been taboos surrounding everything from intellectual to emotional and behavioural problems. Both in terms of how it is viewed, how it should be treated and whether it is possible to talk about it.”
How strong are these taboos today?
“Oh, they still very much exist. If someone has what we now refer to as intellectual disability, we would rather not get involved, and will not want to talk about it.
But it varies widely between different cultures. Take autism, which previously had many myths surrounding it and was very stigmatising for a family - not least because it was believed to be due to emotional coldness from the mother. Nowadays that entire association has been lifted in our culture, as we have learned that it is nothing to do with the mother’s behaviour to the child. It is something in the child’s nervous system that works differently, but, in other cultures, it is still difficult to talk openly about autism and other disabilities.”
Childhood behaviour problems are sometimes seen as a consequence of a bad upbringing, in non-functioning families. But Christopher Gillberg warns against the one-sided psychosocial focus that still exists in some places. He instead emphasises genetics and the chaos that can arise in a family where both parents and children have innate problems with concentration, comprehension, mood swings and impulsiveness.
“There’s a huge amount of explanation in this. We should also be looking at the psychosocial aspect and act where necessary, but it shouldn’t be a one-eyed approach to the assessment of problems. Both parents and children may need neuropsychiatric help, but aren’t getting it currently.”
And when will the change come?
“It has long been high time for it to break through. There is still a division between, for example, pediatric psychiatry and social services, and the usual situation is that they don’t work together other than in extreme cases for instance perhaps when a teenager has begun to be a danger to themselves or other people.”
He describes the Swedish Prison and Probation Service as a pioneer. At some institutions, new inmates are screened for ADHD, since research has shown that a high proportion of young people with violent criminal tendencies have this disorder, often undiagnosed.
“This isn’t something that suddenly happened in their 20s when they became violent perpetrators. Since childhood they’ve been lacking concentration, been impulsive and hyperactive. When it is treated, for example with medication alleviating the symptoms, they get remarkably better in all respects, both within the institution and when they are discharged. This is fantastic, and I wish that awareness about neurodevelopmental problems and the helpful interventions that are available could be quickly increased generally throughout society.”
Which other sections of society need screening?
“The entirety of adult psychiatry. It is still rare for adults with depression, anxiety, personality disorders or psychosis to have their basic neuropsychiatric problems recognised and treated. Outcome studies show that at least half of these adult patients have underlying ADHD, autism, various developmental disorders, reading and writing issues, language disorders, and so on.”
Autism, ADHD, social behaviour disorders and anorexia are conditions that often overlap. And the earlier they are picked up on, the better the outcome, says Christopher Gillberg. This also applies to other diagnoses under the umbrella term ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations).
“As early as two to three years of age, around half of all cases of autism can be determined, and about a third of the ADHD cases. If it is discovered early, the family copes much better, the child can get the right level of teaching at preschool and elementary school, and stress concerning the child is reduced. Sometimes medication can make a huge positive difference too.”
How much are you clinically active yourself?
“On average, one day a week. I have never ever been entirely out of the clinic. If there’s one thing that I want to recommend to younger researchers, it is to also stay clinically actrive.
There’s a lot written in literature today that has been created by people with no clinical experience, and there are often results that are irrelevant in practice. One such example is studies claiming to have examined pure cases of ADHD, pure cases of autism, pure cases of intellectual disability and pure cases of epilepsy I’ve never met any of those children - they simply don’t exist.”
Christopher Gillberg is planning a study of how a medication - already established for another use - would be able to help individuals with autism and other conditions. It will concern a preparation that restores the ‘glutamate/GABA balance’ - aka the accelerator and brake functions in the brain’s reward system.
“This is very exciting. The balance is often disrupted in neurodevelopmental disorders, including in autism and epilepsy. Arvid Carlsson, Nobel Prize winner, was very much ahead of his time in proposing that this imbalance may be key to a number of neuropsychiatric problems, and he has worked for a long time to develop medication that correct the imbalance.
We have tried to launch studies on children, using his medication, but this has been stopped at various levels. We’ve been told that it first has to have been tested on adults in a reliable way for a number of years.
Interest is huge. Every other day I get questions from people around Sweden and from other countries who want to be involved in these and other studies. Or they get in touch to come here for a second opinion. Many consider - and with good reason - that they’ve been inadequately assessed and given a wrong diagnosis.”
During 2017, Christopher Gillberg is moving to a role as senior professor. No question for him of slowing down as he enters his 68th year.
“I can’t understand why anyone with this type of job would stop working just because of their age. But obviously, someone may well eventually come in and say “oh, he’s completely gaga.”
And how easy would it be to go against someone like you?
“Ha, ha, ha!”
“Yes, well hopefully someone will do it anyway. I do want to try and think about how this work will be able to continue, but it is not that easy. The regrowth among child psychiatrists has not been strong, and that has also applied to psychiatry in general.
Christopher Gillberg is an Honorary Professor and Visiting Professor at many universities around the world. He often visits and conducts research in these institutions in collaboration with the Gillberg Neuropsychiatry Centre. But he has been faithful to the University of Gothenburg for a very long time.
“It hasn’t always been a fun or stimulating university, though, and I think that my flight, if you will, to other places – to an extent - has been driven by the lack of visionary leaders here. But in recent years, and especially in the Neuroscience and Physiology department, we have regained our driving force and it has become very stimulating again. There is really a sense of ‘it must be possible to do something’.”
Photos: Emelie Asplund