Lars Christopher Gillberg (born 19 April 1950) is a professor of child and adolescent psychiatry at Gothenburg University in Gothenburg, Sweden, and an honorary professor at the Institute of Child Health , University College London. He has also been a visiting professor at the universities of Bergen, New York, Odense, St George's , San Francisco, and Strathclyde.
Gillberg is known for his research of autism in children, Asperger syndrome, Tourettes syndrome, Fragile X syndrome, Autism Spectrum Disorder (ASD), ADHD, and anorexia nervosa. He is the founding editor of the journal European Child & Adolescent Psychiatry, and is the author and editor of many scientific and educational books. He is the recipient of several scientific awards, including the Philips Nordic Prize 2004 for neurological research, and he has more than 300 scientific papers listed in Medline. Additionally, Gillberg has become known internationally for his contributions to pioneering research projects into the genetics of autism.
Gillberg is also known for his role in a controversy relating to the confidentiality of medical records. The controversy involved public access under the Swedish Principle of Publicity (offentlighetsprincipen) to medical records and other personal data about a group of children participating in an early longitudinal study on ADHD/DAMP, commenced in 1977 at Gothenburg University. Two critics of DAMP and ADHD diagnoses, who had previously filed complaints that questioned the integrity of the study, invoked the Swedish Freedom of Information Act in order to gain access to the raw data of the study after their fraud allegations had been investigated and officially dismissed by the regional ethics committee. Gillberg and two chief physician involved in the study stated that medical ethics principles prevented them from turning over sensitive personal and medical data as the participants' parents had been promised confidentiality in writing before giving informed consent on behalf of their children. However, the court ruled that all files related to the study were to be released under the Swedish Principle of Publicity. Rather than breaking their promises of confidentiality to the participants, the two chief physicians, along with a university administrator, shredded the sensitive files of the study. The following year, Gillberg, as head of the University's Neuropsychiatric Department, and the University Vice-Chancellor were convicted and fined for "breach of duty" in their capacity as public officials at a government institution that had failed to release the documents in accordance with the court order.
In 2009, Carl XVI Gustav of Sweden presented Gillberg with The King's Medal for his contributions in the field of child and adolescent psychiatry.
In the early 1980s, the concept of an 'autism spectrum' was introduced by Lorna Wing and Gillberg. Gillberg has done extensive research into autism throughout his academic career. In 2003, a French and Swedish research team at the Institut Pasteur and the psychiatric departments at Gothenburg University and University of Paris, led by Thomas Bourgeron, Marion Leboyer and Gillberg, discovered the first precisely identified genetic mutations in individuals with autism. The team identified mutations altering two genes on the X chromosome which seem to be implicated in the formation of synapses (communication spaces between neurons), in two families where several members are affected. Previous studies, such as the Paris Autism Research International Sib-Pair Study (PARIS), coordinated by Gillberg and Marion Leboyer, have more generally associated the X-chromosome regions with autism. The 2003 breakthrough indicated the location of the mutation to be on the NLGN4 gene and the NGLN3 gene. The mutation prevents a complete protein from forming and is inherited from the mother.
Since 2006, Gillberg is involved in a large cross-disciplinary project titled "Autism spectrum conditions: the Gothenburg collaborative studies", financed by the Swedish Research Council (Vetenskapsrådet), expected to run until the end of 2009. The project is a collaboration between scientists specialized in child and youth psychiatry, molecular biology and neuroscience and involves a genetic part with an international study team of French, British and U.S. researchers examining various aspects autism. Some of the results were published during 2007. The project also includes a genetic study on the Faroe Islands.
In 1989, Gillberg became instrumental in the publication of the first diagnostic criteria for Asperger syndrome. Gillberg's criteria most closely resemble the original description of Hans Asperger, and for this reason, some clinicians consider them the first choice in clinical practice. All of the following six criteria must be met for confirmation of diagnosis:
Severe impairment in reciprocal social interaction (at least two of the following)
inability to interact with peers
lack of desire to interact with peers
lack of appreciation of social cues
socially and emotionally inappropriate behavior
All-absorbing narrow interest (at least one of the following)
exclusion of other activities
repetitive adherence
more rote than meaning
Imposition of routines and interests (at least one of the following)
on self, in aspects of life
on others
Speech and language problems (at least three of the following)
delayed development
superficially perfect expressive language
formal, pedantic language
odd prosody, peculiar voice characteristics
impairment of comprehension including misinterpretations of literal/implied meanings
Non-verbal communication problems (at least one of the following)
limited use of gestures
clumsy/gauche body language
limited facial expression
inappropriate expression
peculiar, stiff gaze
Motor clumsiness: poor performance on neurodevelopmental examination
Gillberg's criteria differ from those given in the DSM-IV-TR. Some scholars have therefore criticized them for "making it difficult to compare with other studies." It has been argued that the failure of some research groups to replicate some of Gillberg's findings "may relate primarily to fundamental differences in diagnostic approach".
In the 1970s, Gillberg played a leading role in developing the concept Deficits in Attention, Motor control and Perception (DAMP), a concept primarily used in Scandinavia. The DAMP concept as used in more recent publications, refers to Attention-deficit hyperactivity disorder (ADHD) in combination with Developmental Coordination Disorder (DCD). According to Gillberg, it constitutes a "subgroup of the diagnostic category of ADHD, conceptually similar - but not clinically identical - to the WHO concept of HKD (hyperkinetic disorder)" and is diagnosed on the basis of "concomitant attention deficit/hyperactivity disorder and developmental coordination disorder in children who do not have severe learning disability or cerebral palsy".
Some scholars disagree with the lumping of ADHD and DCD, with the argument that they are unrelated. Gillberg stated in 2003 that, although he feels that there is a "very real issue of how to deal with the conflict between splitting (ADHD plus developmental coordination disorder (DCD)) and lumping (DAMP)," he nevertheless feels that "the DAMP construct has been helpful in identifying a group of children with ADHD and multiple needs that will not be self evident if the diagnosis is just ADHD or just DCD." Before the Scandinavian studies, recognition that individuals with attention problems may also have difficulties with movement, perception, and memory had received little attention in studies. According to various studies, half of the children with ADHD also have DCD.
With the development of the ADHD concept, the previous, less precise, category of Minimal Brain Dysfunction (MBD), "a term almost universally employed in child psychiatry and developmental paediatrics from the 1950s to the early 1980s" was replaced. Gillberg began to study DAMP in the late 1970s, when ADHD was still called MBD and the DAMP concept has been adjusted as the term ADHD was introduced and became internationally used. Around 1990, DAMP had become a generally accepted diagnostic concept in two Nordic countries, but when the DSM-IV appeared in 1994, DAMP became considered a redundant term in many countries, since DAMP is essentially equivalent to ADHD in combination with DCD as defined by DSM-IV. Gillberg's four criteria for DAMP are:
ADHD as defined in DSM-IV;
Developmental Coordination Disorder as defined in DSM-IV;
Condition not better accounted for by cerebral palsy; and
IQ higher than about 50 [Gillberg, 2003: box 1].
According to Gillberg, clinically severe form DAMP (or ADHD+DCD) affects about 1.5% of the general population of school age children; another few per cent are affected by more moderate variants. Boys are overrepresented; girls are currently probably underdiagnosed. There are many overlapping conditions, including conduct disorder, depression/anxiety, and academic failure. There is a strong link with autism spectrum disorders in severe DAMP. Familial factors and pre- and perinatal risk factors account for much of the variance. Psychosocial risk factors appear to increase the risk of marked psychiatric abnormality in DAMP. Outcome in early adult age was psychosocially poor in one study in almost 60% of unmedicated cases. About half of all cases with ADHD have DCD, and conversely, ADHD occurs in about half of all cases of DCD.
Gillberg has published around 80 papers on DAMP, ADHD and related conditions.
One of Gillberg's research projects, the Gothenburg study, has become the center of a heated controversy. The controversy concerns the question to what extent the Principle of Public Access, which in Sweden supports transparency in publicly funded activities, can be applied to sensitive data collected in medical studies involving human subjects. In 2003, Gothenburg University was ordered by the court to release medical records and other sensitive data about a group of children who had participated in a longitudinal psychiatric study done by Gillberg and other researchers, to two individuals under the Freedom of Information Act; this was done despite the researchers' assertion that anonymization was not considered feasible due to the nature and length of the study (a small group of participants had been followed for a period of 16 years and the data included a combination of taped interviews, medical records, criminal records, school records, and psychiatric evaluations). The court ordered the University to set conditions for the access so that the interests of the children and the families would be protected.
In April 2003, the University's Vice-Chancellor set the conditions: one of the persons requesting access, the sociologist Eva Kärfve, would have to get her research project approved by the ethical review committee, and each concerned individual would have to consent before documents about her or him could be read by Eva Kärfve and Leif Elinder, the other person who had requested access. However, Kärfve and Elinder appealed the University's conditions and the Administrative Court of Appeal ruled that the conditions were unreasonable. In an analysis of the case, Sven Ove Hansson, Professor and Head of the Department of Philosophy and the History of Technology at the Royal Institute of Technology (KTH), Stockholm, a former member of the Swedish Government Research Advisory Board, wrote: "[I]t is particularly interesting to note that the Court of Administrative Appeal nullified the decision by Gothenburg University to require individual consent and approval from an ethical review committee before giving access to sensitive data on individual research subjects. These are two of the cornerstones of the scientific community's own system for protecting research subjects."
Background and legal battle
Beginning in 1996, pediatrician Leif Elinder criticized Gillberg's research and alleged that the numbers reported by Gillberg were made up.