Christopher Gillberg

Christopher Gillberg

Lars Christopher Gillberg (born 19 April 1950), who has sometimes published as Gillberg and Gillberg with his wife Carina Gillberg, is a professor of child and adolescent psychiatry at Gothenburg University in Gothenburg, Sweden, and an honorary professor at the Institute of Child Health (ICH), University College London.[1] He has also been a visiting professor at the universities of Bergen, New York, Odense, St George's (University of London), San Francisco, and Strathclyde.[2][3]

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,[4][5][6] including the Philips Nordic Prize 2004 for neurological research,[7] 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.[8]

Gillberg is also known for his role in a controversy relating to the confidentiality of medical records.[9] 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.[10] 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.[11] Gillberg and two chief physicians 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.[10][12] 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.[13]

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.[14]


Autism research

In the early 1980s, the concept of an 'autism spectrum' was introduced by Lorna Wing and Gillberg.[15] 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.[8] 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.[16]

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.[17] 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.[18][19] The project also includes a genetic study on the Faroe Islands.[17][20]

Gillberg's criteria for Asperger syndrome

In 1989, Gillberg became instrumental in the publication of the first diagnostic criteria for Asperger syndrome.[21] 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.[22] All of the following six criteria must be met for confirmation of diagnosis:[23]

  1. Severe impairment in reciprocal social interaction (at least two of the following)
    1. inability to interact with peers
    2. lack of desire to interact with peers
    3. lack of appreciation of social cues
    4. socially and emotionally inappropriate behavior
  2. All-absorbing narrow interest (at least one of the following)
    1. exclusion of other activities
    2. repetitive adherence
    3. more rote than meaning
  3. Imposition of routines and interests (at least one of the following)
    1. on self, in aspects of life
    2. on others
  4. Speech and language problems (at least three of the following)
    1. delayed development
    2. superficially perfect expressive language
    3. formal, pedantic language
    4. odd prosody, peculiar voice characteristics
    5. impairment of comprehension including misinterpretations of literal/implied meanings
  5. Non-verbal communication problems (at least one of the following)
    1. limited use of gestures
    2. clumsy/gauche body language
    3. limited facial expression
    4. inappropriate expression
    5. peculiar, stiff gaze
  6. 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."[24] 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".[24]


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.[25][26] 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".[27]

Some scholars disagree with the lumping of ADHD and DCD, with the argument that they are unrelated.[28] 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."[27] 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.[28] According to various studies, half of the children with ADHD also have DCD.[29]

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"[27] 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,[30] 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.[27][31] 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.[27]

Gillberg has published around 80 papers on DAMP, ADHD and related conditions.[27]


One of Gillberg's research projects, the Gothenburg study,[32] has become the center of a heated controversy.[33] 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.[9][34] 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).[10][12][35] The court ordered the University to set conditions for the access so that the interests of the children and the families would be protected.[12]

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.[12] 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."[12]

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.[36] Elinder became associated with the sociologist Eva Kärfve at Lund University, whose research had been devoted to early witch hunts and medieval myths in Europe. They coordinated their criticism and Kärfve wrote a book, published in 2000, rejecting most of the research on DAMP, and especially Gillberg's.[37] Other psychiatrists and neuroscientists in Sweden defended the Gillberg group and argued that Elinder and Kärfve had crossed the line from scientific criticism to personal attacks and vilification.[38][39] The conflict escalated further in 2002, when Kärfve and Elinder wrote separate letters to Gothenburg University, accusing the Gillberg group of scientific misconduct.[40][41] The accusations were investigated by the Ethics Council and dismissed.[42][43][44]

Elinder and Kärfve also demanded access to the original research material for the main DAMP studies. Under a section of the Swedish basic law that grants citizens access to government documents, Elinder and Kärfve were given full access to the documents by an administrative court.[45][46] The University, the Gillberg group, and the participants of the study were strongly opposed to this decision, on the grounds that the material contained medical records and other sensitive information, and that the participants had been promised full confidentiality.[45][46][47][48] A higher court decided that neither the participants, the researchers, nor their institution, were formally entitled to appeal the decision.[49] When all legal avenues had been exhausted, two of Gillberg's coworkers and a university administrator destroyed the 12–27 years old research material. In the legal aftermath, Gillberg and the Rector of Gothenburg University were found guilty of "misuse of office" for not complying with the administrative court's decision.[50]

The two researchers (both chief physicians at Sahlgrenska University Hospital, one of them married to Gillberg), defended their decision to shred the files by referring to the promises of confidentiality that had been issued to the subjects of the study and the letters of objection that had been received from the families that they did not want their personal data used or shared with the private individuals. They argued that turning the files over would have exposed the researchers and the university to potential lawsuits from the subjects for failing to honor a written agreement.[51] They were convicted and fined for destruction of government property.[50]

In July, 2005, the lower criminal court in Gothenburg upheld the right of Kärfve and Elinder to see any data from the Gothenburg study still held by the University. The court fined Gillberg for "misuse of office".[52]

In 2006, Gillberg lodged a complaint with the European Court of Human Rights (ECHR).[10][53] On June 17, 2008, the ECHR announced a "Decision to Communicate" in the case[54] and a request for comment was submitted to the Swedish government, with a October 15, 2008 deadline for the initial response to the charges.[55]

Reaction to the ruling

The Swedish court's decision to grant the two critics access to the data was controversial. When the study participants were contacted by Gillberg and asked if they would be prepared to have the data released, all but one family refused.[50] Citing that, and the promise of confidentiality given to the participants as a precondition, Gillberg and the other researchers decided to not turn over the personal data.[56] 267 Swedish doctors signed a letter in support of Gillberg's decision to not hand over the data.[57] After the verdict, the chairman of the Central Ethical Review Board of Sweden, Johan Munch, said that in Swedish legislation, the Principle of Public Access[58] is incompatible with promises of absolute confidentiality, and that the Central Ethical Review Board therefore no longer approves such promises.[34] According to Martin Ingvar of the Karolinska Institute, medical researchers in Sweden will be forced to change the current practice because of the verdict. Ingvar told media that medical studies in Sweden must now adhere to a strict anonymization encoding, even in extensive studies like Gillberg’s which contain large amounts of clinical material collected over long periods of time, in spite of the increase in cost and the larger margins of error.[34]

Elisabeth Rynning, a professor of medical law at the University of Uppsala, questioned whether the court had been fully aware of the relevant laws. Access to these kinds of records may only be granted for the purpose of research or for the collection of statistics. Elinder had not stated any such purpose in his application, and Kärfve had only argued that the material would be useful for her research, not that it would actually be used in a research project. She was in fact not allowed to use the material in her research project, since that would have required a previous approval by an ethics committee. There was also the problem that Elinder and Kärfve requested the material as private citizens, while at the same time stating that they needed it in their professional capacities. If they had requested the material as representatives of their employers, the court would not have jurisdiction. Finally Rynning questioned how the court could decide that no one would be hurt, as the law requires, if Elinder and Kärfve were given full access to the data. Several participants had testified to the court that they would be deeply offended and hurt if Elinder and Kärfve could read their medical records.[59]

The Swedish Parliamentary Ombudsman also investigated the affair.[13] In the 18-page summary dedicated to the case in the yearly report by the Ombudsman, Gillberg and Gothenburg University are criticized for violating the Freedom of Information Act and thus Kärfve's and Elinder's civil right to access to records belonging to the state.[13] Both the lower court and the appeal court were unanimous in finding Gillberg guilty of breach of duty arising from failure to comply in regards to the release of documents; additionally, the Supreme Court of Sweden did not agree to retry Gillberg's breach of duty case. In response to the concerns raised by Gillberg at the trial that a situation had arisen for him whereby "he was prevented by medical ethics and research ethics from disclosing information about the participants in the study and their next-of-kin", the Swedish Parliamentary Ombudsman stated that "the international declarations drawn up by the World Medical Association and also the European Convention [...] do not categorise them as undertakings that can be considered to take priority over Swedish law." The Parliamentary Ombudsman also stated that, "it is not possible to make decisions on issues concerning confidentiality until the release of a document is requested. It follows therefore that the assurances of confidentiality cited above cannot take priority over the law as it stands or a court’s application of the statutes".[13]

Law revisions and debate

In 2003, a bill was introduced in the Swedish parliament, Riksdagen, due to the secrecy issues raised during the trial that granted the two private individuals access to sensitive personal data.[60] This bill did not pass, but in 2004, a new act on ethical review of research involving humans was introduced. Changes were put in place in order to strengthen the protection for human subjects participating in medical research and to expand the scope of the ethical councils, while bringing the Swedish legislation closer to the European Commission directive.[61] The official act governing medical research was further adjusted in 2008: ethical review is now legally required in Sweden, the review committees have official status,[12] and consent can be withdrawn by participants in medical research at any point.[62] However, voices in the medical research community have raised concerns about law revisions' lack of attention to additional safeguards for researchers falsely accused of scientific misconduct and are calling for procedures that would ensure that scientific misconduct investigations are handled in a correct and legally secure manner.[63]

The debate about the case between representatives from the social sciences and natural sciences has continued in the popular press and in media. In 2007, the controversy resulted in a book by science journalist Vanna Beckman,[64] with a focus on the larger issues of biologism and sociologism as they played out in the debate, a book which also described the ideological battle against research in psychology and psychiatry driven by various religious groups.[65] In April 2008, a hotly debated[66][67][68][69] television documentary aired on Swedish television, where Kärfve and Erlinder returned to the spotlight to air their concerns about the shredding of the documents.[70]

See further


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  57. ^ "267 läkare stöder Christopher Gillberg mot JO". Dagens Medicin March 23, 2005.
  58. ^ Principle of Public Access. Ministry of Justice, Swedish Government Offices, 14 June 2005. Retrieved 20 August 2006.
  59. ^ Rynning, Elisabeth. "Domarnas okunskap om lagen tvingade forskare till lagbrott" (The judges' lack of knowledge about the law forced researchers to break the law). Dagens Nyheter May 14, 2005.
  60. ^ Motion 2003/04:K379. Sekretess och handlingars offentlighet (Secrecy and public documents). Motion till riksdagen, 2003/04:K379], Sekretess och handlingars offentlighet (decision by Riksdagen)
  61. ^ SOU 2005:78 Changes in the ethical review act. Swedish government official report on ethical review, September 2005 and Betänkande av Etikprövningsutredningen SOU 2005:78, Stockholm 2005, in Swedish. Retrieved 20 August 2006.
  62. ^ ""Medical Research" . Codex. The Swedish Research Council, 23 April 2008. Retrieved 22 May 2008: "On 1 January 2004, the The Act concerning the Ethical Review of Research Involving Humans came into effect. [...] A person's welfare is to be given higher priority than the needs of the community and science. It is therefore that safeguards are in place, such as a subject's right to withdraw consent to participate in research, effective immediately.[...] By a change of the Act effectuated 2008, [...] the definition of handling personal data is redefined. Research involving handling of certain personal data shall from now on be examined [by an ethics council] regardless of whether research subjects give their informed consent or not. Research that clearly involves a risk of harming subjects, it can be interviews or surveys for example, shall likewise be ethically examined."
  63. ^ Stenqvist, Ola (2008). Anklagelser om forskningsfusk måste hanteras korrekt. (Accusations of research fraud must be handled correctly). Dagens Medicin. 20 February 2008: "The consequences of unclear handling of abuse allegations can be devastating, as in the notorious Gillberg case where the cheating allegations are used in an attempt to destroy the opponents in an ideological and / or personal conflict. When Leif Elinder and Eva Kärfve could not win the debate on Christopher Gillberg's research results they chose to accuse him of cheating. None of the circumstances they refer to are the least reason to suspect cheating, and the scientists are also formally acquitted of all suspicion, but the case also illustrates how innocent and acquitted researchers may be damaged unless the investigation is handled in a correct and legally secure manner."
  64. ^ Beckman, Vanna (2007). Strider under hjärnåldern: Om ADHD, biologism, sociologism. Pavus Utbildning AB, 2007. ISBN 9789197666008.
  65. ^ Ulfstrand, Staffan. Bittra stridigheter i adhd-frågan ("Bitter controversies in the ADHD question"). Uppsala Nya Tidning, online edition, 27 November 2007. In Swedish. Retrieved 20 April 2008.
  66. ^ Hultgren, Fredrik. Adhd-dokumentär kritiseras ("Adhd documentary criticized"). Dagens Medicin, online edition, 16 April 2008. (In Swedish).
  67. ^ Heilig, Markus et al.""SVT desinformerar om adhd-drabbade" ("SVT misinforms about adhd-affected") Dagens Nyheter, online edition, 24 April 2008. (In Swedish).
  68. ^ Jersild, P.C. "Sveriges tabloidteve". ("Sweden's tabloid TV") Dagens Nyheter, online edition, 3 May 2008. (In Swedish).
  69. ^ Hultin, Kicki and Tina Thunander. "'Gillberg duckade'. Angripna SVT-producenter: 'Martin Ingvar hyllar Gillberggruppen med irrelevanta argument'. ("'Gillberg ducked'. SVT producers under attack: 'Martin Invar praises the Gillberg group with irrelevant arguments'"). DN, online edition, 6 May 2008. (In Swedish).
  70. ^ Hultin, Kicki and Tina Thunander. Fördärvet. One-hour documentary. Sveriges Television, 14 April 2008.(In Swedish).

Selected publications by Gillberg

Journal Articles

  • Steffenburg, Suzanne; Gillberg Christopher, Hellgren Lars & al. (May 1989). "A Twin Study of Autism in Denmark, Finland, Iceland, Norway and Sweden". Journal of Child Psychology and Psychiatry and Allied Disciplines (The Association for Child Psychology and Psychiatry) 30 (3): 405–416. doi:10.1111/j.1469-7610.1989.tb00254.x. PMID 2745591. ISSN 0021-9630. 
  • Baroncohen, Simon; Jane Allen, Christopher Gillberg (December 1992). "Can Autism Be. Detected at 18 Months? The Needle, the Haystack and the CHAT". The British Journal of Psychiatry (The Royal College of Psychiatrists) 161 (6): 839–143. doi:10.1192/bjp.161.6.839. ISSN 0007-1250. 
  • Happe, Francesca; Ehlers Stefan, Fletcher Paul & al. (December 20, 1996). "'Theory of mind' in the brain. Evidence from a PET scan study of Asperger syndrome". Neuroreport (Rapid Science Publishers) 8 (1): 197–201. doi:10.1097/00001756-199612200-00040. PMID 9051780. ISSN 0959-4965. 
  • Ståhlberg, Ola; Söderström Henrik, Råstam, Maria et al. (July 2004). "Bipolar disorder, schizophrenia, and other psychotic disorders in adults with childhood onset AD/HD and/or autism spectrum disorders". Journal of Neural Transmission (Springer Wien) 111 (7): 891–902. doi:10.1007/s00702-004-0115-1. PMID 15206005. ISSN 0300-9564. 
  • Miller, Marilyn T.; Strömland, Kerstin, Ventura Liana et al. (April–May 2005). "Autism associated with conditions characterized by developmental errors in early embryogenesis: a mini review". International Journal of Developmental Neuroscience (Elsevier) 23 (2-3): 201–219. doi:10.1016/j.ijdevneu.2004.06.007. PMID 15749246. ISSN 0736-5748. 


  • Gillberg, Christopher (1981). Neuropsychiatric aspects of perceptual, motor and attentional deficits in seven-year-old Swedish children. Uppsala: Uppsala University. ISBN 91-554-1212-2. 
  • Coleman, Mary; Gillberg, Christopher (1985). The biology of the autistic syndromes. New York: Praeger. ISBN 0-03-000834-4. 
  • Gillberg, Christopher (ed.) (1989). Diagnosis and treatment of autism. New York: Plenum Press. ISBN 0-306-43481-4. 
  • Gillberg, Christopher (1995). Clinical Child Neuropsychiatry. Cambridge University Press. ISBN 0-521-54335-5. 
  • Gillberg, Christopher (1997). Barn, Ungdomar och vuxna med Asperger Syndrom - Normala, geniala, nördar? (in Swedish). Gothenburg: Bokförlaget Cura AB. ISBN 91-972641-6-4. 
  • Gillberg, Christopher; Peeters, Theo (1998). Autism : medical and educational aspects. London: Whurr. ISBN 0-521-54335-5. 
  • Gillberg, Christopher (2002). A Guide to Asperger Syndrome. Cambridge University Press. ISBN 0-521-00183-8. 
  • Gillberg, Christopher;Harrington, Richard; Steinhausen, Hans-Christoph (2006). A clinician's handbook of child and adolescent psychiatry. Cambridge: Cambridge University Press. ISBN 978-0-521-81936-7. 

External links

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