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Autism Spectrum Disorders (ASD) in Blind Children: Very High Prevalence, Potentially Better Outlook

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Abstract

Autism spectrum disorders affected 19 of 38 unselected children at a school for the blind in Cordoba, Argentina. Autism was linked to total congenital blindness, not blindness’ etiology, acquired or incomplete blindness, sex, overt brain damage, or socioeconomic status. Autism “recovery,” had occurred in 4 verbal children. Congenital blindness causes profoundly deviant sensory experience and massive reorganization of brain connectivity. Its ≥30 times greater prevalence than in sighted children suggests a distinct pathogenesis. Unawareness of autism’s high prevalence in blind individuals includes blindness’ rarity, misunderstanding of autism as “disease” rather than dimensional behavioral diagnosis, reluctance to diagnose it in blind children, and ignorance of its potentially more favorable outcome. Future investigation may suggest interventions to prevent or mitigate it.

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Acknowledgments

We thank the parents who allowed their children to participate in the study and provided details of their past medical and behavioral histories. We acknowledge the help of the many professionals at the Instituto Helen Keller who opened the children’s records to us and provided invaluable information on the children’s abilities. We are grateful to Drs. Solomon Moshé, Roberto Tuchman, and Deborah Fein and an anonymous reviewer for their helpful comments on earlier versions of the manuscript.

Author contribution

Dr. Rubin Jure, author, conceived, organized and carried out the clinical study, data collection and interpretation, and wrote early drafts of the manuscript. He collaborated with data analysis and intermediate draft revisions, and approved the final manuscript as submitted. Dr. Ramon Pogonza, co-author, designed and carried out the statistical analysis, contributed to intermediate draft revisions, and approved the final manuscript as submitted. Dr. Isabelle Rapin, co-author, contributed to the design of the clinical study, interpretation of the data, revised intermediate drafts, and approved the final manuscript as submitted. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

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Authors and Affiliations

  1. Centro Privado de Neurología y Neuropsicología Infanto Juvenil Wernicke, Viamonte 131 B° General Paz, CP: X5004AUC, Córdoba, Argentina

    Rubin Jure

  2. UTI Hospital de Niños de la Santísima Trinidad de Córdoba; Cátedra de Informática Médica, Universidad Nacional de Córdoba, Córdoba, Argentina

    Ramón Pogonza

  3. Saul R. Korey Department of Neurology, Department of Pediatrics, and Rose F. Kennedy Center for Research on Intellectual and Developmental Disability, Albert Einstein College of Medicine, Bronx, NY, USA

    Isabelle Rapin

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  1. Rubin Jure
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Corresponding author

Correspondence to Rubin Jure.

Appendix: 3di Questions “not asked” and “adapted” for blind children

3di Spanish Version Translated from the English version by Alexia Rattazzi MD. alexiapanaacea@gmail.com Fundación INECO. Buenos Aires. Argentina.

Appendix: 3di Questions “not asked” and “adapted” for blind children

(translated back from the Spanish to English. Spanish questions available from RJ upon request). Numbers are those of the 3di

Questions “not asked”

  • 8.9.6 (Qid 224)—Can he/she have a sense how you are feeling by your facial expression?

  • 8.9.12 (Qid 709)—Almost never or never looks at the person to whom he/she is speaking (or with whom he/she is communicating), actively looks away to avoid eye contact

  • 8.9.13 (Qid 710)—Does he/she tend to avoid looking at the person who is speaking to (or communicating with) him/her; looks the other way, appears inattentive or preoccupied

Questions adapted for blind children in this study

  • 8.13.6 (Qid 282)—Does he/she make any gesture to ask someone to approach?

Adapted to: Does he/she call or make any type of sound to ask someone to approach?

  • 08/13/17 (Qid 737) If I want to share my interest in a distant target with the child, I can look at it, point to it, or look back and forth between the target and the child, looking for evidence of awareness of joint attention or shared interest and understanding. Does he/she manifest any such behaviors?

Adapted to: If I want to draw attention to an object at a distance, I can name the object or make a sound that evokes the object, for example moo for a cow. I can then ask: What was that?

  • 9.7.5 (Qid 248) If you would like to capture the attention of the child in a room full of people, how would you get the child to look at you?

Adapted to: If you would like to capture the attention of the child in a room full of people, how would you capture his/her attention?

  • 9.7.10 (Qid 251) When the child sees you after not having seen you for a while (e.g., when he/she returns from school or when you return from work), does he/she smile to greet you?

Adapted to: When the child meets you after not been with you in a while (e.g., when he/she returns from school or when you return from work) does he/she smile to greet you?

  • 11.1.8 (Qid 755) When playing, does the child tend to lign-up the toys, be they cars, blocks, or animals, or organize patterns by type, size, color, or some other feature rather than play with them more imaginatively?

Adapted to: When playing, does the child tend to lign-up the toys, be they cars, blocks, or animals, or organize them in patterns by type, size, shapes, textures, or some other feature rather than play with them more imaginatively?

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Jure, R., Pogonza, R. & Rapin, I. Autism Spectrum Disorders (ASD) in Blind Children: Very High Prevalence, Potentially Better Outlook. J Autism Dev Disord 46, 749–759 (2016). https://doi.org/10.1007/s10803-015-2612-5

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