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.

Keywords:
Autism, Autobiographies, Perceptions, Representations, Nosography
1.
Bailey A, Phillips W, Rutter M: Autism: towards an integration of clinical genetic, neuropsychological, and neurobiological perspectives. J Child Psychol Psychiatry 1996;37:89–126.
2.
Itard JM: Mémoire sur le mutisme produit par la lésion des fonctions intellectuelles; in Mémoires de l’Académie Royale de Médecine, 1848, vol 1, pp 107–121.
3.
Carrey NJ: Itard’s 1828 Memoire on ‘Mutism Caused by a Lesion of the Intellectual Functions’: a historical analysis. J Am Acad Child Adolesc Psychiatry 1995;34:1655–1661.
4.
Kanner L: Austistic disturbances of affective contact. Nervous Child 1943;32:217–253.
5.
Asperger H: Die autistischen Psychopathen im Kindesalter. Arch Psychiatr Nervenkr 1944;117:76–136.
6.
Berquez G: L’autisme infantile. Introduction à une clinique relationnelle selon Kanner. Paris, PUF, 1983.
7.
Wing L: Asperger’s syndrome: a clinical account. Psychol Med 1981;11:115–129.
8.
Rapin I: The autistic-spectrum disorders. N Engl J Med 2002;347:302–303.
9.
Happé F: The autobiographical writings of three Asperger syndrome adults: problems of interpretation and implication for theory; in Frith U (ed): Autism and Asperger Syndrome. Cambridge, Cambridge University Press, 1991, pp 207–242.
10.
Sacks O: An Anthropologist on Mars. New York, Knopf, 1995.
11.
Bemporad J: Adult recollections of a formerly autistic child. J Autism Dev Disord 1979;9:179–197.
12.
Volkmar FR, Cohen DJ: The experience of infantile autism: a first-person account by Tony W. J Autism Dev Disord 1985;15:47–54.
13.
Cesaroni L, Garber M: Exploring the experience of autism through firsthand accounts. J Autism Dev Disord 1991;21:303–313.
14.
O’Neill M, Jones RSP: Sensory-perceptual abnormalities in autism: a case for more research? J Autism Dev Disord 1997;27:283–293.
15.
Jones RSP, Quigney C, Huws JC: First-hand accounts of sensory perceptual experiences in autism: a qualitative analysis. J Intellect Dev Disabil 2003;28:112–121.
16.
Molloy H, Vasil L: Asperger syndrome, adolescence, and identity: looking beyond the label. London, Kingsley Publishers, 2004.
17.
Sommer R, Clifford J, Norcross J: A bibliography of mental patients’ autobiographies: an update and classification system. Am J Psychiatry 1998;155:1261–1264.
18.
Crossley M, Crossley N: ‘Patient’ voices, social movements and the habitus; how psychiatric survivors ‘speak out’. Soc Sci Med 2001;52:1477–1489.
19.
Pope C, Mays N: Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. Br Med J 1995;311:42–45.
20.
Happé F, Frith U: The weak coherence account: detail-focused cognitive style in autism spectrum disorders. J Autism Dev Disord 2006;36:5–25.
21.
Chamak B, Cohen D: L’autisme: vers une nécessaire révolution culturelle. Med Sci 2003;19:1152–1159.
22.
Corin E: Facts and meaning in psychiatry: an anthropological approach to the lifeworld of schizophrenics. Cult Med Psychiatry 1990;14:153–188.
23.
Chamak B: Autism and social movements: French parents’ associations and international autistic individuals’ organisations. Sociol Health Illn 2008;30:76–96.
24.
Chamak B: Les récits de personnes autistes: une analyse socio-anthropologique. Handicap Rev Sci Hum Soc 2005;105–106:33–50.
25.
Chamak B: L’annonce du diagnostic à des personnes autistes adultes: qu’en disent les personnes concernées?; in Danion A (ed): Le diagnostic en psychiatrie. Questions éthiques. Paris, Masson, 2006, pp 95–104.
26.
Rosenhall U, Nordin V, Sandstrom M, Ahlsen G, Gillberg C: Autism and hearing loss. J Autism Dev Disord 1999;29:349–357.
27.
Kern JK, Trivedi MH, Garver CR, Grannemann BD, Andrews AA, Savla JS, Johnson DG, Mehta JA, Schroeder JL: The pattern of sensory processing abnormalities in autism. Autism 2006;10:480–494.
28.
Grandin T: My experiences with visual thinking, sensory problems and communication difficulties. 2000. http://www.autism.org/temple/visual.html (accessed January, 2006).
29.
Chamak B, Bonnot-Briey S, Cohen D: A propos du syndrome d’Asperger: un témoignage de l’intérieur. PSN (Psychiatr Sci Hum Neurosci) 2004;2:46–54.
30.
Van Dalen JGT: Autisme van binnenuit bekeken: kijken door licht-autistische ogen. Engagement 1994;21:29–39.
31.
Hutt C, Hutt SJ, Lee D, Ounsted C: Arousal and childhood autism. Nature 1964;204:909–919.
32.
Ornitz AM, Guthrie D, Farley AH: The early development of autistic children. J Autism Child Schizophr 1977;7:207–229.
33.
Kientz MA, Dunn W: A comparison of the performance of children with and without autism on the sensory profile. Am J Occup Ther 1997;51:530–537.
34.
Greenspan S, Weider S: 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. J Dev Learn Disord 1997;1:87–141.
35.
Iarocci G, McDonald J: Sensory integration and the perceptual experience of persons with autism. J Autism Dev Disord 2006;36:77–90.
36.
Boddaert N, Chabanne N, Belin P, Bourgeois M, Royer V, Barthelemy C, Mouren-Simeoni MC, Philippe A, Brunelle F, Samson Y, Zilbovicius M: Perception of complex sounds in autism: abnormal auditory cortical processing in children. Am J Psychiatry 2004;161:2117–2120.
37.
Oram Cardy JE, Flagg EJ, Roberts W, Brain J, Roberts TPL: Magnetoencephalography identifies rapid temporal processing deficit in autism and language impairment. Neuroreport 2005;16:329–332.
38.
Novick B, Vaughan HG, Kurtzberg D, Silson R: An electrophysiologic indication of auditory processing defects in autism. Psychiatry Res 1980;3:107–114.
39.
Ludlow AK, Wilkins AJ, Heaton P: The effect of coloured overlays on reading ability in children with autism. J Autism Dev Disord 2006;36:507–516.
40.
Bertone A, Mottron L, Jelenic P, Faubert J: Enhanced and diminished visuo-spatial information processing in autism depends on stimulus complexity. Brain 2005;128:2430–2441.
41.
Talay-Ongan A, Wood K: Unusual sensory sensitivities in autism: a possible crossroads. Int J Disabil Dev Educ 2000;47:201–212.
42.
Noens I, Van Berckelaer-Onnes I: Making sense in a fragmentary world: communication in people with autism and learning disability. Autism 2004;8:197–218.
43.
Jones RSP, Zahl A, Huws JC: First-hand accounts of emotional experiences in autism: a qualitative analysis. Disabil Soc 2001;16:393–401.
44.
Ben Shalom D, Mostofsky SH, Hazlett RL, Goldberg MC, Landa RJ, Faran Y, McLeod DR, Hoehn-Saric R: Normal physiological emotions but differences in expression of conscious feelings in children with high-functioning autism. J Autism Dev Disord 2006;36:395–400.
45.
Berthoz S, Hill E: The validity of using self-reports to assess emotion regulation abilities in adults with autism spectrum disorder. Eur Psychiatry 2005;20:291–298.
46.
Plaisted K, O’Riordan M, Baron-Cohen S: Enhanced discrimination of novel, highly similar stimuli by adults with autism during a perceptual learning task. J Child Psychol Psychiatry 1998;40:777–783.
47.
De Clercq H: Dis maman, c’est un homme ou un animal? Autisme France Diffusion, 2002.
48.
Hermelin B: Bright Splinters of the Mind. A Personal Story of Research with Autistics Savants. London, Kingsley, 2001.
49.
Schlooz WA, Hulstijn W, van den Broeck PJA, van der Pijll AC, Gabreëls F, van der Gaag RT, Rotteveel JJ: Fragmented visuospatial processing in children with pervasive developmental disorder. J Autism Dev Disord 2006;36:1025–1037.
50.
Brian JA, Tipper SE, Weaver B, Bryson SE: Inhibitory mechanism in autism spectrum disorders: typical selective inhibition of location versus facilitated perceptual processing. J Child Psychol Psychiatry 2003;44:552–561.
51.
Mottron L, Burack JA, Iarocci G, Belleville S, Enns JT: Locally orientated perception with intact global processing among adolescents with high-functioning autism: evidence from multiple paradigms. J Child Psychol Psychiatry 2003;44:904–913.
52.
Brosnan MJ, Scott FJ, Fox S, Pye J: Gestalt processing in autism: failure to process perceptual relationships and the implications for contextual understanding. J Child Psychol Psychiatry 2004;45:459–469.
53.
Gepner B: Autistic constellation, movement, time and thought: emotion mis-sight, other temporospatial processing disorders of sensory flows and dyssynchrony in autism. Devenir 2006;18:333–379.
54.
Frith U: Autism. Explaining the Enigma. Oxford, Blackwell, 1989.
55.
Brock J, Brown CC, Boucher J: The temporal binding deficit hypothesis of autism. Dev Psychopathol 2002;14:209–224.
56.
Robins E, Guze SB: Establishment of diagnosis validity in psychiatric illness: its application to schizophrenia. Am J Psychiatry 1970;126:983–987.
© 2008 S. Karger AG, Basel
2008
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.