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. He has also been a visiting professor at the universities of Bergen, New York, Odense, St George's (University of London), San Francisco, and Glasgow and Strathclyde.[1][2]

Christopher Gillberg
Born (1950-04-19) 19 April 1950
Gothenburg, Sweden
NationalitySwedish
Occupationprofessor
Known for

Gillberg is also known for the controversial Gothenburg Study of Children with DAMP, where Gillberg and his colleagues were subject to accusations of manipulating research data. During these events, Gillberg received a suspended sentence as well as a fine, due to that he was found guilty of malfeasance in office due to his failiure to make the research available for review.[3] After a court looked over the case again and ruled that the data was to be made available for a review, three of Gillbergs coworkers destroyed the 22 shelf meters of research material.[4][3] Which they were subsequently sentenced for.[4] The case was widely covered in the media.

Gillberg is also the founding editor of the journal European Child & Adolescent Psychiatry.

Autism research

In the early 1980s, the concept of an 'autism spectrum' was introduced by Lorna Wing and Gillberg.[5] 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.[6] 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.[7]

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.[8] 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.[9][10] The project also includes a genetic study on the Faroe Islands.[8][11]

Controversy

Gillberg is also known for his role in a controversy relating to the confidentiality of medical records.[12] The controversy involved public access under the Swedish Principle of Public Access (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.[13] The docent (docent is the second highest grade in the Swedish academic system) of sociology Eva Kärfve and the pediatrician and general practioner Leif Elinder who were critical of what they saw as scientific misconduct in Gillbergs research and questioned Gillberg's practices, 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.[14] 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 Principle of Public Access. 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.[13][15] 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.[16]

In 2019, Gillberg and his colleagues became the subject of controversy again. They entered into a debate regarding sex-change.[17][18] In an article in a major Swedish newspaper they argued with the help of the hypothesis Rapid Onset Gender Dysphoria. Which lacks scientific support.[19][20]

DAMP, MBD, and ADHD

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.[21][22] 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".[23]

Some scholars disagree with the lumping of ADHD and DCD, with the argument that they are unrelated.[24] 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."[23] 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.[24] According to various studies, half of the children with ADHD also have DCD.[25]

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"[23] 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,[26] 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.[23][27] Gillberg's four criteria for DAMP are:

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.[23]

Gillberg has published around 80 papers on DAMP, ADHD and related conditions.[23]

One of Gillberg's research projects, the Gothenburg study,[28] has become the center of a heated controversy.[29] 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.[12][30] 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).[13][15][31] The court ordered the university to set conditions for the access so that the interests of the children and the families would be protected.[15]

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.[15] 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."[15]

Background

Beginning in 1996, pediatrician Leif Elinder criticized Gillberg's research and alleged that the numbers reported by Gillberg were made up.[32] Elinder became associated with the sociologist Eva Kärfve at Lund University. They coordinated their criticism and Kärfve wrote a book, published in 2000, rejecting most of the research on DAMP, and especially Gillberg's.[33] 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.[34][35] However, Kärfve called this an attempt to cover up fraudulent research practices.[36] The conflict escalated further in 2002, when Kärfve and Elinder wrote separate letters to Gothenburg University, formally accusing the Gillberg group of scientific misconduct.[37][36] The accusations were investigated by the Ethics Council and dismissed.[38][39][40]

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.[41][42] 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.[41][42][43][44] A higher court decided that neither the participants, the researchers, nor their institution, were formally entitled to appeal the decision.[45] 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.[46]

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.[47] They were convicted and fined for destruction of government property.[46]

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".[48]

In 2006, Gillberg lodged a complaint with the European Court of Human Rights (ECHR).[13][49] On 17 June 2008, the ECHR announced a "Decision to Communicate" in the case[50] and a request for comment was submitted to the Swedish government, with a 15 October 2008 deadline for the initial response to the charges.[51]

Reaction to the ruling

The Swedish court's decision to grant the scholar Eva Kärfve and the pediatrician Leif Elinder access to the data to review it 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.[46] 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.[52] 267 Swedish doctors signed a letter in support of Gillberg's decision to not hand over the data.[53] 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[54] is incompatible with promises of absolute confidentiality, and that the Central Ethical Review Board therefore no longer approves such promises.[55] 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.[30]

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.[56]

The Swedish Parliamentary Ombudsman also investigated the affair.[16] 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.[16] 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".[16]

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.[57] 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.[58] 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,[15] and consent can be withdrawn by participants in medical research at any point.[59] 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.[60]

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,[61] 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.[62] In April 2008, a hotly debated[63][64][65][66] television documentary aired on Swedish television, where Kärfve and Erlinder returned to the spotlight to air their concerns about the shredding of the documents.[67]

However, the program was shut down in 2008 after the Board of Appeal condemned it for its lack of impartiality in relation to the said programme. The program was critiqued for being one sided.[68] This was due to that Gillberg and his colleagues refused to participate in the program. Which meant that the journalists only had access to one side of the conflict and had to make due with what they got. In an attempt to mitigate the problematic situation Gillberg and his colleagues was also given two other opportunities after the program had aired to be able to give their side of the story through an interview, but they decided not to participate again.[69]

Gillberg's criteria for Asperger syndrome

In 1989, Gillberg became instrumental in the publication of the first diagnostic criteria for Asperger syndrome.[70] They are applied in clinical practice due to the adhesion to the original description of Hans Asperger.[71] All of the following six criteria must be met for confirmation of diagnosis:[72]

  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."[73] 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".[73]

Awards

Gillberg has received several awards for his research, including

  • Fernström prize,1991
  • Ingvar Award, 1995
  • The Ronald McDonald Major Award for Paediatrics, 1998
  • Ågrenska Major Medicine Prize, 2001
  • Philips Nordic Prize in 2004
  • Honorary professor at the Institute of Child Health (ICH), University College London in 2008.[74]
  • The King's Medal of the Seraphim order, 2009[75]
  • Dahlberg award, 2010.
  • The Söderberg Prize for Medicine, 2012
  • In 2010, the Gillberg Neuropsychiatry Centre (GNC), named after Gillberg, within the Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, was founded.
  • 2016 INSAR Lifetime Achievement Award at the International Meeting for Autism Research (IMFAR)

See further

Notes
  1. Munk-Jørgensen, P. (2003). "Biographies". Acta Psychiatrica Scandinavica. 108 (2): 160. doi:10.1034/j.1600-0447.2003.00154.x. S2CID 221438541.
  2. Modern Approaches in Learning Disabilities Conference Archived 3 December 2008 at the Wayback Machine. Developmental Disabilities Research Group (DDREG) 2005 annual conference, South West Centre for Education, Research & Development. Retrieved 23 May 2008.
  3. White, 2005
  4. Wärngård, 17 March 2006
  5. Gillberg, C. (2006) "Autism Spectrum Disorders". A Clinician's Handbook of Child and Adolescent. Eds. Christopher Gillberg, Richard Harrington and Hans-Christoph Steinhausen. Cambridge University Press, 2006. ISBN 0-521-81936-9, p. 447.
  6. Gosline, Anna. "Roadmap to unravelling autism revealed". New Scientist, 28 June 2005. Retrieved 20 August 2006.
  7. Betancur, Catalina; et al. (2003). "Mutations of the X-linked genes encoding neuroligins NLGN3 and NLGN4 are associated with autism". Nature Genetics. 34 (1): 27–29. doi:10.1038/ng1136. PMC 1925054. PMID 12669065. Press release: "Two genes associated with autism" Archived 12 September 2006 at the Wayback Machine. Press Office, Institut Pasteur, University of Paris. 31 March 2003. Retrieved 20 August 2006.
  8. Vetenskapsrådet. Detaljerad information för diarienr 2006–3449 Archived 24 May 2010 at the Wayback Machine: Gillberg, Christopher "Psychiatric diseases". 8 November 2006 (in Swedish). Retrieved 6 May 2008.
  9. Christopher Gillberg Archived 9 February 2012 at the Wayback Machine. Scientific Commons. Retrieved 6 May 2008.
  10. Buxbaum JD, Cai G, Nygren G, et al. (2007). "Mutation analysis of the NSD1 gene in patients with autism spectrum disorders and macrocephaly". BMC Med. Genet. 8: 68. doi:10.1186/1471-2350-8-68. PMC 2248565. PMID 18001468.
  11. Ellefsen, Asa et al. (2008). "Autism in the Faroe Islands. An Epidemiological Study". Journal of Autism and Developmental Disorders, 37-3 (March 2007), pp. 437–444.
  12. White, Caroline (2005). "Clash over public access rights and patient confidentiality sparks trial". British Medical Journal. 330 (7486): 273. doi:10.1136/bmj.330.7486.273-a. PMC 548200.
  13. Gornall, Jonathan (2007)."Hyperactivity in children: the Gillberg affair". BMJ, 335 (7616): 370–373, 2007)
  14. Björkman, Barbro and Sven Ove Hansson (2006). "Bioethics in Sweden". Cambridge Quarterly of Healthcare Ethics. New York: Summer 2006. Vol. 15, Issue 3; pp. 285–293: "After studying the case, the committee concluded that there was no ground for the accusations. At that stage, Kärfve and Elinder took an unusual step: They invoked the Swedish Freedom of Information Act and demanded access to Gillberg's research records. This was possible because Gothenburg University, like almost all Swedish universities, is a Government institution and because Sweden has a far-reaching legislation guaranteeing the public's free access to official documents unless secrecy is needed to protect important interests.
  15. Björkman, Barbro and Sven Ove Hansson (2006). "Bioethics in Sweden". Cambridge Quarterly of Healthcare Ethics. New York: Summer 2006. Vol. 15, Issue 3; pp. 285–293.
  16. "Prosecution of employees of Gothenburg University for breach of duty arising from failure to comply with judgments of the Administrative Court of Appeal concerning the release of documents etc. (Reg. no. 1568-2003 and 1606–2003)". Redogörelse 2006/07:JO1 Justitieombudsmännens ämbetsberättelse (The Swedish Parliamentary Ombudsmen Report for the period 1 July 2005 to 30 June 2006), English summary pp. 613–631.
  17. https://www.svd.se/a/1k1rMl/konsbytena-pa-barn-ar-ett-stort-experiment
  18. https://www.svd.se/a/ddxPkX/felaktiga-pastaenden-om-konsbekraftande-vard
  19. https://psykologtidningen.se/2019/08/27/forstaelse-av-kon-maste-baseras-pa-fakta/
  20. https://www.caaps.co/rogd-statement
  21. Gillberg, C. (2003). "Deficits in attention, motor control, and perception: A brief review". Archives of Disease in Childhood. London: Oct 2003. Vol. 88, Iss. 10; p. 904: "In Scandinavia, the DAMP (deficits in attention, motor control, perception) concept was developed in the 1970s, in an attempt to operationalise the syndrome of MBD, long before the publication of the DSM-III-R (in which ADHD appeared in a formalised fashion for the first time)."
  22. Tervo, Raymond C. et al. (2002)."Children with ADHD and motor dysfunction compared with children with ADHD only". Developmental Medicine & Child Neurology 2002; 44, p. 383: "Establishing a diagnosis is often difficult because separately identified disorders such as DCD and attention-deficit-hyperactivity disorder (ADHD) have a substantial overlap (Bax 1999). A child who has problems of attention may have difficulties with movement, perception, and memory (Gillberg and Rasmussen 1982a,b). In Scandinavia these overlapping symptoms and signs are labeled as deficits in attention, motor control, and perception (DAMP)".
  23. Gillberg, Christopher (2003). "Deficits in attention, motor control, and perception: a brief review". Archives of Disease in Childhood. 88 (10): 904–910. doi:10.1136/adc.88.10.904. PMC 1719331. PMID 14500312.
  24. Tervo Raymond C.; et al. (2002). "Children with ADHD and motor dysfunction compared with children with ADHD only". Developmental Medicine & Child Neurology. 2002 (44): 383–390. doi:10.1111/j.1469-8749.2002.tb00832.x.
  25. Martin, Neilson C.; Piek Jan P; Hay, David (February 2006). "DCD and ADHD: A genetic study of their shared aetiology". Human Movement Science. The Association for Child Psychology and Psychiatry. 25 (1): 110–124. doi:10.1016/j.humov.2005.10.006. ISSN 0167-9457. PMID 16442650.
  26. Airaksinen E; Bille B; Carlström G; Diderichsen J; Ehlers S; Gillberg C; et al. (1991). "Barn och ungdomar med DAMP/MBD". Läkartidningen. 88: 714.
  27. Gillberg, Christopher (1999). "Nordisk enighet om DAMP/ADHD – Aktuellt dokument sammanfattar dagens kunskap". Läkartidningen. 96: 3330–3331.
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  29. Kennedy, Christina. "Applåder mötte den åtalade Gillberg utanför rättssalen" ("Prosecuted, Gillberg is met with applauds outside the courtroom").Dagens Medicin, online edition, 2 June 2005, in Swedish. Retrieved 20 August 2006. Paragraph 1: "Efter år av böcker, myndighetsbeslut, överklagade domar och ett oändligt antal debattartiklar landade forskarstriden slutligen i tingsrätten i förra veckan." (After years of books, decisions by government authorities, appeals and an endless number of debate articles, the research dispute finally landed in district court last week.)
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  34. Fernell, Elisabeth; Arvidsson, Jan; Larsson, Christer; al (8 November 2000). "Börjar likna personförföljelse" (in Swedish). Svenska Dagbladet. p. 12.
  35. Bejerot, Susanne et al. "'Rättshaverist skadar dampforskningen'. Sex psykiatriforskare kräver ett slut på mångårig personlig kampanj" ('Litigious doctrinaire hurts damp research'. Six psychiatry researchers demand an end to the long-running personal campaign". Dagens Nyheter, 22 January 2003, p. A04 (A6 A2), in Swedish. Retrieved 20 August 2006.
  36. Kärfve, Eva (25 January 2003). "Ni försöker tysta ner forskningsfusk. Sociologidocent slår tillbaka mot anklagelserna att hon driver personlig kampanj mot dampforskare" (in Swedish). Dagens Nyheter. pp. A04 (A6 A2).
  37. Karlsson, Hasse (23 April 2002). "Damp-forskare anmälda av känd kritiker för möjligt fusk" (in Swedish). Dagens Medicin. p. 13.
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  41. Kammarrätten i Göteborg 6 February 2003 Dom i mål nr 5741-2002
  42. Kammarrätten i Göteborg 6 February 2003 Dom i mål nr 6208-2002
  43. L., K. (5 March 2003). "Ge inte Eva Kärfve min sons journaler (Don't give my son's journals to Eva Kärfve)" (in Swedish). Göteborgsposten. p. 4.
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  45. Regeringsrätten 4 April 2003 Avgörande i mål nr 1273-03
  46. White C (July 2005). "Swedish court rules against doctor at centre of row over destroyed research data". BMJ. 331 (7510): 180. doi:10.1136/bmj.331.7510.180-f. PMC 1179809. PMID 16037439.
  47. Gillberg, Christopher. "Forskare ger falska löften" (Researchers give false promises). Brännpunkt, Svenska Dagbladet, 13 May 2006. Retrieved 20 August 2006.
  48. White, Caroline (2005). "Swedish court rules against doctor at centre of row over destroyed research data". British Medical Journal. 331 (7510): 180. doi:10.1136/bmj.331.7510.180-f. PMC 1179809. PMID 16037439.
  49. Statement of facts, Application no. 41723/06 by Christopher GILLBERG against Sweden lodged on 10 October 2006. European Court of Human Rights. Retrieved 23 August 2008.
  50. Decision to Communicate. "Gillberg v. Sweden". European Court of Human Rights, 7 July 2008, p. 8. Retrieved 23 August 2008.
  51. Hultgren, Fredrik. Europadomstolen tar upp Gillbergaffären. Dagens Medicin, 13 August 2008. In Swedish. Retrieved 23 August 2008.
  52. Osvald, Clara. Gillberg gav sin syn under rättegången Archived 11 March 2007 at the Wayback Machine (Gillberg gave his view during the trial). Ekot, Sveriges Radio, 25 May 2005, in Swedish. Retrieved 20 August 2006
  53. "267 läkare stöder Christopher Gillberg mot JO". Dagens Medicin 23 March 2005.
  54. Principle of Public Access. Ministry of Justice, Swedish Government Offices, 14 June 2005. Retrieved 20 August 2006.
  55. Osvald, Clara. "Professor Christopher Gillberg fälldes". Archived 13 March 2007 at the Wayback Machine ("Professor Christopher Gillberg convicted") Ekot, Sveriges Radio, 27 June 2005, in Swedish. Retrieved 20 August 2006. Original sentence in Swedish: "Enligt Johan Munch som är ordförande i Centrala etikprövningsnämnden fungerar den svenska lagstiftningen med offentlighetsprincipen inte tillsammans med den här typen av förbindelser om absolut sekretess. Därför godkänner etikprövningsnämnden inte den typen av löften i samband längre. "
  56. 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 14 May 2005.
  57. 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)
  58. SOU 2005:78 Changes in the ethical review act Archived 28 September 2007 at the Wayback Machine. Swedish government official report on ethical review, September 2005 and Betänkande av Etikprövningsutredningen SOU 2005:78 Archived 2 January 2006 at the Wayback Machine, Stockholm 2005, in Swedish. Retrieved 20 August 2006.
  59. ""Medical Research" Archived 16 June 2008 at the Wayback Machine . Codex. The Swedish Research Council, 23 April 2008. Retrieved 22 May 2008: "On 1 January 2004, 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."
  60. 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."
  61. Beckman, Vanna (2007). Strider under hjärnåldern: Om ADHD, biologism, sociologism. Pavus Utbildning AB, 2007. ISBN 978-91-976660-0-8.
  62. Ulfstrand, Staffan. Bittra stridigheter i adhd-frågan Archived 9 August 2011 at the Wayback Machine ("Bitter controversies in the ADHD question"). Uppsala Nya Tidning, online edition, 27 November 2007. In Swedish. Retrieved 20 April 2008.
  63. Hultgren, Fredrik. Adhd-dokumentär kritiseras Archived 8 June 2008 at the Wayback Machine ("Adhd documentary criticized"). Dagens Medicin, online edition, 16 April 2008. (In Swedish).
  64. Heilig, Markus et al.""SVT desinformerar om adhd-drabbade" ("SVT misinforms about adhd-affected") Dagens Nyheter, online edition, 24 April 2008. (In Swedish).
  65. Jersild, P.C. "Sveriges tabloidteve". ("Sweden's tabloid TV") Dagens Nyheter, online edition, 3 May 2008. (In Swedish).
  66. 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).
  67. Hultin, Kicki and Tina Thunander. Fördärvet Archived 27 January 2010 at the Wayback Machine. One-hour documentary. Sveriges Television, 14 April 2008. (In Swedish).
  68. Hultgren, Fredrik. Adhd-dokumentär kritiseras Archived 8 June 2008 at the Wayback Machine ("Adhd documentary criticized"). Dagens Medicin, online edition, 16 April 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. Attwood, Tony (2006). The Complete Guide to Asperger's Syndrome. Jessica Kingsley Publishers, 2006. ISBN 1-84310-495-4, p.36: "One of the results of the discussions [at a small international conference about Asperger's syndrome in London in 1988] was the publication of the first diagnostic criteria in 1989, revised in 1991 (Gillberg 1991; Gillberg and Gillberg 1989)".
  71. Attwood, Tony (2006). The Complete Guide to Asperger's Syndrome. Jessica Kingsley Publishers, 2006. ISBN 1-84310-495-4, p.36: "the criteria of Christopher Gillberg, who is based in Sweden and London, remain those that most closely resemble the original descriptions of Asperger. Thus, these are the criteria of first choice for me and many experienced clinicians."
  72. Gillberg IC, Gillberg C (July 1989). "Asperger syndrome—some epidemiological considerations: a research note". J Child Psychol Psychiatry. 30 (4): 631–638. doi:10.1111/j.1469-7610.1989.tb00275.x. PMID 2670981.
  73. Klin Ami; Pauls, David; Schultz, Robert; Volkmar, Fred (2005). "Three Diagnostic Approaches to Asperger Syndrome: Implications for Research". Journal of Autism and Developmental Disorders. 35 (2): 221–234. doi:10.1007/s10803-004-2001-y. PMID 15909408. S2CID 19076633.
  74. Staff list. ICH, Academic units, Neurosciences. Retrieved 23 May 2008.
  75. Professor Christopher Gillberg awarded H.M. The King's Medal Archived 24 February 2012 at the Wayback Machine. University of Gothenburg, 30 January 2009. Retrieved 16 June 2009.

Selected publications by Gillberg

Journal articles
  • Steffenburg, Suzanne; Gillberg Christopher; Hellgren Lars; et 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. ISSN 0021-9630. PMID 2745591.
  • Baron-Cohen, 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): 839–43. doi:10.1192/bjp.161.6.839. ISSN 0007-1250. PMID 1483172. S2CID 196176.
  • Philippe, Anne; Martinez Maria; Guilloud-Bataille Michel; et al. (May 1999). "Genome-wide scan for autism susceptibility genes". Human Molecular Genetics. Oxford University Press. 8 (5): 805–812. doi:10.1093/hmg/8.5.805. ISSN 1460-2083. PMID 10196369.
  • 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. ISSN 0300-9564. PMID 15206005. S2CID 7824831.
  • 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. ISSN 0736-5748. PMID 15749246. S2CID 14248227.

Selected books
  • Gillberg, Christopher (1981). Neuropsychiatric aspects of perceptual, motor and attentional deficits in seven-year-old Swedish children. Uppsala: Uppsala University. ISBN 978-91-554-1212-8.
  • Gillberg, Christopher, ed. (1989). Diagnosis and treatment of autism. New York: Plenum Press. ISBN 978-0-306-43481-5.
  • Gillberg, Christopher (1997). Barn, Ungdomar och vuxna med Asperger Syndrom – Normala, geniala, nördar? (in Swedish). Gothenburg: Bokförlaget Cura AB. ISBN 978-91-972641-6-7.
  • Gillberg, Christopher; Peeters, Theo (1998). Autism : medical and educational aspects. London: Whurr. ISBN 978-0-521-54335-4.
  • 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.
  • Coleman M, Gillberg C, The Autisms, Oxford University Press, 2012
  • Gillberg C, ADHD and its many associated problems, Oxford University Press, 2014
  • Gillberg C, Råstam M, Fernell E (red.) Barn och Ungdomspsykiatri, Natur & Kultur, 2015
  • Gillberg C, ESSENCE Om ADHD, autism och andra utvecklingsavvikelser, Natur & Kultur, 2018
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