What Can We Learn about Autism from Autistic Persons?

Background: To date, few studies have focused on the viewpoints of autistic persons themselves despite an increasing number of published autobiographies. The aim of this study is to highlight their personal experiences, and to compare them to scientific and medical knowledge and representations. Method: Adopting an anthropological approach, we analyzed 16 autobiographical writings and 5 interviews with autistic persons. We systematically screened this material and explored the writers’ sociodemographic characteristics, cognitive skills and interests with a focus on their sensory-perceptual experiences and their representations of autism. Results: The authors’ ages (22–67 years), their countries (n = 8) and backgrounds were varied, and most of them were high-functioning individuals with autism or Asperger syndrome. The most striking observations were that all of them pointed out that unusual perceptions and information processing, as well as impairments in emotional regulation, were the core symptoms of autism, whereas the current classifications do not mention them. Conclusions: Our results suggest that what has been selected as major signs by psychiatric nosography is regarded as manifestations induced by perceptive peculiarities and strong emotional reactions by the autistic persons who expressed themselves. These considerations deserve to be taken into account by professionals to better understand the behavior and needs of autistic persons. We propose to include this point in the reflection on the next psychiatric classifications.

[1]  O. Sacks,et al.  An anthropologist on Mars , 1994 .

[2]  S. Mostofsky,et al.  Normal Physiological Emotions but Differences in Expression of Conscious Feelings in Children with High-Functioning Autism , 2006, Journal of autism and developmental disorders.

[3]  J. Huws,et al.  First-hand accounts of sensory perceptual experiences in autism: a qualitative analysis , 2003 .

[4]  S. Tipper,et al.  Inhibitory mechanisms in autism spectrum disorders: typical selective inhibition of location versus facilitated perceptual processing. , 2003, Journal of child psychology and psychiatry, and allied disciplines.

[5]  J. Enns,et al.  Locally oriented perception with intact global processing among adolescents with high-functioning autism: evidence from multiple paradigms. , 2003, Journal of child psychology and psychiatry, and allied disciplines.

[6]  Ilse Noens,et al.  Making Sense in a Fragmentary World , 2004, Autism : the international journal of research and practice.

[7]  J. L. O'neill Through the Eyes of Aliens: A Book about Autistic People , 1998 .

[8]  W. Dunn,et al.  A comparison of the performance of children with and without autism on the Sensory Profile. , 1997, The American journal of occupational therapy : official publication of the American Occupational Therapy Association.

[9]  L. Kanner Autistic disturbances of affective contact. , 1968, Acta paedopsychiatrica.

[10]  F. Happé,et al.  The autobiographical writings of three Asperger syndrome adults : Problems of interpretation and implications for theory , 1991 .

[11]  C. Hutt,et al.  Arousal and Childhood Autism , 1964, Nature.

[12]  J. Tate,et al.  A Real Person: Life on the Outside , 2003 .

[13]  E. Corin Facts and meaning in psychiatry. An anthropological approach to the lifeworld of schizophrenics , 1990, Culture, medicine and psychiatry.

[14]  A. Bailey,et al.  Autism: towards an integration of clinical, genetic, neuropsychological, and neurobiological perspectives. , 1996, Journal of child psychology and psychiatry, and allied disciplines.

[15]  J. Norcross,et al.  A bibliography of mental patients' autobiographies: an update and classification system. , 1998, The American journal of psychiatry.

[16]  Madhukar H. Trivedi,et al.  The pattern of sensory processing abnormalities in autism , 2006, Autism : the international journal of research and practice.

[17]  Robert Jones,et al.  Sensory-Perceptual Abnormalities in Autism: A Case For More Research? , 1997, Journal of autism and developmental disorders.

[18]  Serena Wieder,et al.  Developmental Patterns and Outcomes in Infants and Children with Disorders in Relating and Communicating: A Chart Review of 200 Cases of Children with Autistic Spectrum Diagnoses , 2005 .

[19]  First-hand Accounts of Emotional Experiences in Autism: A qualitative analysis , 2001 .

[20]  Jessica Brian,et al.  Magnetoencephalography identifies rapid temporal processing deficit in autism and language impairment , 2005, Neuroreport.

[21]  I. Rapin,et al.  The autistic-spectrum disorders. , 1999, The New England journal of medicine.

[22]  D. Cohen,et al.  À propos du syndrome d’Asperger: un témoignage de l’intérieur — 2nde partie , 2004 .

[23]  B. Chamak Les récits de personnes autistes : une analyse socio-anthropologique , 2005 .

[24]  Itard's 1828 mémoire on "Mutism caused by a lesion of the intellectual functions": a historical analysis. , 1995, Journal of the American Academy of Child and Adolescent Psychiatry.

[25]  U. Frith,et al.  The Weak Coherence Account: Detail-focused Cognitive Style in Autism Spectrum Disorders , 2006, Journal of autism and developmental disorders.

[26]  John McDonald,et al.  Sensory Integration and the Perceptual Experience of Persons with Autism , 2006, Journal of autism and developmental disorders.

[27]  Caroline C Brown,et al.  The temporal binding deficit hypothesis of autism , 2002, Development and Psychopathology.

[28]  Y. Samson,et al.  Perception of complex sounds in autism: abnormal auditory cortical processing in children. , 2004, The American journal of psychiatry.

[29]  N. Crossley,et al.  'Patient' voices, social movements and the habitus; how psychiatric survivors 'speak out'. , 2001, Social science & medicine.

[30]  M. Brosnan,et al.  Gestalt processing in autism: failure to process perceptual relationships and the implications for contextual understanding. , 2004, Journal of child psychology and psychiatry, and allied disciplines.

[31]  H. Asperger,et al.  Die „Autistischen Psychopathen” im Kindesalter , 1944, Archiv für Psychiatrie und Nervenkrankheiten.

[32]  M. Rutter,et al.  Bright Splinters of the Mind: A Personal Story of Research with Autistic Savants , 2001 .

[33]  J. Barron,et al.  There's a boy in here , 1992 .

[34]  D. Kurtzberg,et al.  An electrophysiologic indication of auditory processing defects in autism , 1980, Psychiatry Research.

[35]  D. Guthrie,et al.  The early development of autistic children , 1977, Journal of autism and childhood schizophrenia.

[36]  A. Talay-Ongan,et al.  Unusual Sensory Sensitivities in Autism: A possible crossroads , 2000 .

[37]  D. Cohen,et al.  L'autisme : vers une nécessaire révolution culturelle , 2003 .

[38]  J. Bemporad Adult recollections of a formerly autistic child , 1979, Journal of autism and developmental disorders.

[39]  L Cesaroni,et al.  Exploring the experience of autism through firsthand accounts , 1991, Journal of autism and developmental disorders.

[40]  Sylvie Berthoz,et al.  The validity of using self-reports to assess emotion regulation abilities in adults with autism spectrum disorder , 2005, European Psychiatry.

[41]  J. Faubert,et al.  Enhanced and diminished visuo-spatial information processing in autism depends on stimulus complexity. , 2005, Brain : a journal of neurology.

[42]  B. Chamak Autism and social movements: French parents' associations and international autistic individuals' organisations. , 2008, Sociology of health & illness.

[43]  U Rosenhall,et al.  Autism and Hearing Loss , 1999, Journal of autism and developmental disorders.

[44]  Arnold J Wilkins,et al.  The Effect of Coloured Overlays on Reading Ability in Children with Autism , 2006, Journal of autism and developmental disorders.

[45]  S. Guze,et al.  Establishment of diagnostic validity in psychiatric illness: its application to schizophrenia. , 1970, The American journal of psychiatry.

[46]  L. Wing,et al.  Asperger's syndrome: a clinical account , 1981, Psychological Medicine.

[47]  F. Gabreëls,et al.  Fragmented Visuospatial Processing in Children with Pervasive Developmental Disorder , 2006, Journal of autism and developmental disorders.

[48]  F. Volkmar,et al.  The experience of infantile autism: A first-person account by Tony W. , 1985, Journal of autism and developmental disorders.

[49]  U. Frith Autism: Explaining the Enigma , 2005 .

[50]  S. Baron-Cohen,et al.  Enhanced discrimination of novel, highly similar stimuli by adults with autism during a perceptual learning task. , 1998, Journal of child psychology and psychiatry, and allied disciplines.

[51]  Liane Holliday Willey Pretending to be Normal: Living with Asperger's Syndrome , 1999 .