Exiting Nirvana Read online

  restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in intensity or focus

  apparently inflexible adherence to specific, nonfunctional routines or rituals

  stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

  persistent preoccupation with parts of objects

  Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: social interaction,

  language as used in social communication, or

  symbolic or imaginative play

  The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

  The association’s definitions of Asperger’s disorder and PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) depend on the previous definition. The criteria for Asperger’s disorder are almost identical, except for the absence of “clinically significant general delay” in “language… [or] in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.” PDD-NOS may be diagnosed “when there is a severe and pervasive impairment of reciprocal social interaction or verbal and nonverbal communication, or when stereotyped behavior, interest, and activities are present” but the criteria for “atypical autism” or another specific disorder are not met. Autism may be called atypical “because of late onset, atypical symptomatology, or sub-threshold symptomatology, or all of these.”

  The Autism Society of America Definition of Autism

  This is the definition of autism that appears in every issue of the Autism Society’s newsletter, The Advocate.

  Autism is a complex developmental disorder that typically appears in the first three years of life. The result of a neurological disorder that affects the functioning of the brain, autism and its related disorders have been estimated to occur in as many as 1 in 500 individuals. Autism is four times more prevalent in boys than girls and knows no racial, ethnic, or social boundaries. Family income, lifestyle, and educational levels do not affect the chance of autism’s occurrence.

  Autism interferes with the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and nonverbal communication, social interactions, and leisure and play activities. The disorder makes it hard for them to communicate and relate to the outside world. They may exhibit repeated body movements (hand-flapping, rocking), unusual responses to people or attachments to objects, and they may resist changes in routines.

  Over one half million people in the U.S. today have some form of autism. Its prevalence rate now places it as the third most common developmental disability — more common than Down syndrome.

  APPENDIX III Useful Publications

  Books

  There are now more books on autism than anyone can read. The best introduction to their range is the 200-title list available from the Autism Society of North Carolina Bookstore at 505 Oberlin Road, Suite 230, Raleigh, NC 27605–1345. Tel: (919) 743–0208. Web site: www.autismsociety-nc.org. It includes all the titles below and most of the others cited in the text.

  Cohen, Shirley. Targeting Autism: What We Know, Don’t Know, and Can Do to Help Young Children with Autism and Related Disorders (Berkeley: University of California Press, 1998). A realistic and readable survey of autism and its current treatments. Cohen describes an encouraging number of helpful educational programs, but remains skeptical of claims of cure.

  Grandin, Temple. Thinking in Pictures and Other Reports from My Life with Autism (New York: Doubleday, 1995). A successful and articulate professional, Grandin gives significant insights into the abilities and disabilities of autism.

  Frith, Uta, ed. Autism and Asperger Syndrome (Cambridge: Cambridge University Press, 1991). Six experts on autism describe autism and Asperger’s syndrome and consider their overlap. Contains Asperger’s original paper.

  Hart, Charles. Without Reason: A Family Copes with Two Generations of Autism (New York: Harper & Row, 1989). How autism affected the author’s uncle in the days before diagnosis and treatment, and how it has affected his son.

  McDonnell, Jane Taylor. News from the Border: A Mother’s Memoir of Her Autistic Son (New York: Ticknor & Fields, 1993). A vivid account of the development of an autistic child into an adolescent and young adult struggling to enter the normal world. Includes a valuable afterword by Paul McDonnell.

  Maurice, Catherine. Let Me Hear Your Voice: A Family’s Triumph over Autism (New York: Ballantine Books, 1994). A mother’s detailed account of her two children’s successful treatment by intensive behavioral methods. An informative and hopeful story that earns trust by its refusal to claim the method as a universal cure.

  Pollak, Richard. The Creation of Dr. B: A Biography of Bruno Bettelheim(New York: Simon & Schuster, 1997). A fascinating examination of the career of the man whose influence did so much to retard the understanding and treatment of autism.

  Powers, Michael D., ed. Children with Autism: A Parents’ Guide (Kensington, Md.: Woodbine House, 1989). A comprehensive introduction. Extensive lists of national and state resources.

  Schopler, Eric, ed. Parent Survival Manual: A Guide to Crisis Resolution and Related Developmental Disorders (New York: Plenum Press, 1995). Combining the experience of professionals and parents, this short, practical book is crammed with ingenious suggestions for dealing with the problems that arise in every aspect of daily life with an autistic child. Seroussi, Karyn. Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery (New York: Simon and Schuster, 2000). A far-reaching exploration of the possible role of diet in the treatment of autism.

  Siegel, Bryna. The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders (New York: Oxford University Press, 1996). Comprehensive and thorough, Siegel’s book is richly packed with examples from her wide clinical experience.

  Wing, Lorna. Autistic Children: A Guide for Parents and Professionals (New York: Brunner-Mazel, 1985). Dr. Wing explains autism with the authority of a professional and the understanding of a parent.

  Periodicals

  Autism Research Review International, Bernard Rimland, ed. Summarizes research in specialized journals; special interest in nutritional treatments. Published quarterly by Autism Research Institute, 4182 Adams Avenue, San Diego, CA 92116.

  Journal of Autism and Developmental Disabilities, Gary B. Mesibov, ed. Scholarly reports of highly specialized research; reviews of current books. Published quarterly by Plenum Press, 233 Spring Street, NY 10013.

  The MAAP: A Quarterly Newsletter for Families of More Advanced Individuals with Autism, Asperger Syndrome, and Pervasive Developmental Disorder, Susan Moreno, ed. Perspectives on the problems and possibilities of high-functioning autism, written by parents, professionals, and autistic people themselves. Published by MAAP Services, Inc., P.O. Box 524, Crown Point, IN 46308. Web site: www.maapservices.org.

  NAARRATIVE: Newsletter of the National Alliance for Autism Research. Updates on research, legislation, and other issues concerning autism. Published by National Alliance for Autism Research, 414 Wall Street, Research Park, Princeton, NJ 08540. Toll-free tel. (888) 777-NAAR. Web site: www.naar.org.

  Published Materials About Jessy

  Bogyo, Lola, and Ronald Ellis. “Elly: A Study in Contrasts,” in The Exceptional Brain, L. K. Obler and D. Fein, eds. (New York: Guilford Press, 1988).

  Park, Clara Claiborne. “Autism into Art: A Handicap Transfigured,” in High-Functioning Individuals with Autism, E. Schopler and G. B. Mesibov, eds. (New York: Plenum Press, 1992).

  ———. “Elly and the Right to Education,” in Contemporary
Issues in Special Education, R. E. Schmid, J. Moneypenny, and R. Johnston, eds. (New York: McGraw-Hill, 1977).

  ———. “Growing Out of Autism,” in Autism in Adolescents and Adults, E. Schopler and G. B. Mesibov, eds. (New York: Plenum Press, 1983).

  ———. The Siege: A Family’s Journey into the World of an Autistic Child. Boston: Little, Brown, 2001. First published in 1967 as The Siege: The First Eight Years of an Autistic Child; reissued in 1982 with an epilogue, “Fifteen Years After.”

  ———. “Social Growth in Autism: A Parent’s Perspective,” in Social Behavior in Autism, E. Schopler and G. B. Mesibov, eds. (New York: Plenum Press, 1986).

  Park, David. “Operant Conditioning of a Speaking Autistic Child,” Journal of Autism and Childhood Schizophrenia, vol. 4, no. 2 (1974), pp. 189–191.

  Park, David, and Philip Youderian. “Light and Number: Ordering Principles in the World of an Autistic Child,” Journal of Autism and Childhood Schizophrenia, vol. 4, no. 4 (1974), pp. 313–323.

  APPENDIX IV Useful Addresses

  United States

  Autism Research Institute, 4182 Adams Avenue, San Diego, CA 92116. Tel: (619) 281-7165; Web site: www.autism.com/ari.

  Autism Services Center, 605 Ninth Street, P.O. Box 507, Huntington, WV 25710–0507. Tel: (304) 525-8014; Web site: www.autismservices.com; e-mail: [email protected].

  Autism Society of America, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814-3015. Tel: (301) 657-0881; (800) 328-8476; Web site: www.autism-society.org. Founded by parents in the days when parents were under suspicion, the society now includes thousands of parents, teachers, and physicians nationwide. With chapters in every state, it is the parent’s and teacher’s best resource, and should be every professional’s first recommendation.

  MAAP Services, Inc., P.O. Box 524, Crown Point, IN 46308. Tel: (219) 662-1311; Web site: www.maapservices.org.

  Overseas

  Autism-Europe, Avenue E. Van Becelaere 26B, bte 21, B-1170 Brussels, Belgium. Tel: +32 (0)2 675 72 70; e-mail: [email protected]; Web site: www.autismeurope.arc.be.

  National Autistic Society, 393 City Road, London EC1V-1NG, United Kingdom. Tel: Main switchboard, +44 (0)20 7833 2299; helpline: +44 (0)870 600 8585; e-mail: [email protected]. Its Web site, www.oneworld.org/autism_uk, provides a link to a wide variety of sites, including international organizations and informational sites. The society maintains a listing of autism societies all over the world. Travelers who contact these will find autism opens the door to shared experience that crosses every border.

  Source Notes

  Chapter 1: Introductory

  1. The words are from my earlier book about Jessy, The Siege: The First Eight Years of an Autistic Child, originally published by Little, Brown in 1967. It was reissued in 1982 with an epilogue, “Fifteen Years After.” It is being issued in 2001 as The Siege: A Family’s Journey into the World of an Autistic Child. (The quoted passage is on page 3.)

  2. Bruno Bettelheim, The Empty Fortress: Infantile Autism and the Birth of the Self (New York: Free Press, 1967), p. 125.

  3. Leo Kanner, “Autistic Disturbances of Affective Contact” (1943), in Classic Readings in Autism, A. M. Donnellan, ed. (New York: Teachers College, Columbia University, 1985), p. 50. Kanner spoke at a meeting of the National Society for Autistic Children, July 17–19, 1969.

  4. Clifford Geertz, “Learning with Bruner,” New York Review of Books, April 10, 1997.

  Chapter 2: “That is not sound”

  1. Lorna Wing, “The Relationship Between Asperger’s Syndrome and Kanner’s Autism,” in Autism and Asperger Syndrome, Uta Frith, ed. (Cambridge: Cambridge University Press, 1991), p. 111.

  2. Ibid., p. 109.

  3.Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM IV) (Washington, D.C.: American Psychiatric Association, 1994).

  4.NAARRATIVE: Newsletter of the National Alliance for Autism Research, no. 3 (fall 1998).

  5. Ibid., no. 6 (summer 2000).

  Chapter 3: “When the time comes”

  1. Kanner, op. cit., p. 43.

  2. Ibid., pp. 43–44.

  3. Frith, in Autism and Asperger Syndrome, p. 18.

  4. Ibid., p. 19.

  5. Kanner, op. cit., p. 37.

  6. Eric Courchesne et al., “Recent Advances in Autism,” in Neurobiology and Infantile Autism, H. Naruse and E. M. Ornitz, eds. (New York: Elsevier Science Publications, 1992), p. 115.

  Chapter 4: “Guess what!”

  1. Wing, op. cit., p. 95; Bryna Siegel, The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders (New York: Oxford University Press, 1996), pp. 49–50.

  2. See Paul’s afterword in Jane Taylor McDonnell’s News from the Border: A Mother’s Memoir of Her Autistic Son (New York: Ticknor & Fields, 1993), pp. 373–375.

  Chapter 5: “All different kind of days”

  1. Lola Bogyo and Ronald Ellis, “Elly: A Study in Contrasts,” in The Exceptional Brain, L. K. Obler and D. Fein, eds. (New York: Guilford Press, 1988), pp. 268–271. The authors have kept the pseudonym I used for Jessy in The Siege.

  2 . Ibid.

  3. Ibid.

  4. David Park and Philip Youderian, “Light and Number: Ordering Principles in the World of an Autistic Child,” Journal of Autism and Childhood Schizophrenia, vol. 4, no. 4 (1974), pp. 315–318.

  5. The quotations are from Frances Groves Dodd, unpublished journal, entries of October 20 and November 27, 1972.

  Chapter 6: “When I ten,thatminus one!”

  1. For more on Jessy’s slow road to a full school day, see C. C. Park, “Elly and the Right to Education,” in Contemporary Issues in Special Education, R. E. Schmid, J. Moneypenny, and R. Johnston, eds. (New York: McGraw-Hill, 1977), pp. 34–37.

  2. Bogyo and Ellis, op. cit., pp. 269–270. For more on Jessy’s numbers, see Park and Youderian, “Light and Number.”

  Chapter 7: “The hangman hangs by the clothespin because of new politeness”

  1. For one of these drawings of number people, see The Siege, 1982 or 2001 edition.

  2. Uta Frith, Autism: Explaining the Enigma (Oxford: Basil Blackwell, 1989), p. 12; Frith, in Autism and Asperger Syndrome, p. 17.

  3. “Lewis and Boucher (1988) have shown that autistic children’s pretense is unimpaired relative to controls when the play is ‘instructed,’ that is, when the children are told what to pretend.” Gregory Currie, “Simulation-Theory, Theory-Theory, and Evidence from Autism,” in Theories of Theories of Mind, P. Carruthers and P. K. Smith, eds. (Cambridge: Cambridge University Press, 1996), p. 251.

  4. Wing, op. cit., p. 109.

  Chapter 8: “The sky is purple-black”

  1. Stephen Wiltshire, Floating Cities; foreword by Oliver Sacks (New York: Summit Books, 1991).

  2. Ernest C. Pascucci, exhibition catalog for “A World of a Different Color — The Paintings of Jessica Park,” The Bookcellar Café, Cambridge, Massachusetts, February 29–May 1, 1992 (unpublished).

  Chapter 9: “Because can tell by the face”

  1. Christopher Gillberg, “Clinical and Neurological Aspects of Asperger Syndrome in Six Family Studies,” in Frith, ed., Autism and Asperger Syndrome, p. 132.

  2. Courchesne et al., op. cit., p. 120.

  Chapter 10: “I guess Darth Vader learned from consequences! Like me!”

  1. For more, see D. Park, “Operant Conditioning of a Speaking Autistic Child,” Journal of Autism and Childhood Schizophrenia, vol. 4, no. 2 (1974), pp. 189–191.

  2. J. R. Cautela and J. Groden, Relaxation: A Comprehensive Manual for Adults, Children, and Children with Special Needs (Champaign, Ill.: Research Press, 1978).

  Chapter 11: “Guess what! Some of the people at work are my friends!”

  1. Reproduced in The Siege, 1982 and 2001 editions.

  2. C. C. Park, “Growing Out of Autism,” in Autism in Adolescents andAdults, E. Schopler and G. B. Mesibov, eds. (New York: Plenum, 1983), p. 294.

  3. The whole episode
can be seen in “Rage for Order,” the hour-long section on autism from the BBC’s series on Dr. Oliver Sacks, The Mind Traveller, shown in 1996 on PBS (Rosetta Pictures for the British Broadcasting Company, directed by Christopher Rawlence).

  Picture Credits and Copyright Acknowledgments

  Picture Credits

  Howard Levitz, TGL Photoworks, Williamstown, MA: All photographs in the color insert; photographs on pages 1, 117, and 127.

  David Park: Photographs on pages 106, 107, and 128.

  Rosalie Winard: All photographs in the black-and-white insert; photographs on pages iii and 105.

  Copyright Acknowledgments

  Most of chapter 1, as well as the closing pages of chapter 12, appeared as “Exiting Nirvana” in The American Scholar, spring 1998. I owe special thanks to Anne Fadiman, the Scholar’s editor; that trial run, made at her suggestion, gave me the courage to undertake this book.

  Passages in chapters 1 and 3 from Leo Kanner, “Autistic Disturbances of Affective Control,” reprinted by permission of the publisher from Donnellan, A., Classic Readings in Autism (New York: Teachers College Press © 1985 by Teachers College, Columbia University. All rights reserved.).

  Passages in chapters 2 and 4 from Lorna Wing, “The Relationship Between Asperger’s Syndrome and Kanner’s Autism,’’ and in chapter 3 from Uta Frith, reprinted from Uta Frith, ed., Autism and Asperger Syndrome (Cambridge: Cambridge University Press, 1991). Reprinted by permission of Cambridge University Press.

  Portions of chapters 2, 3, 4, 8, 9, 10, and 11 have been adapted from passages in “Growing Out of Autism,” in E. Schopler and G. B. Mesibov, eds., Autism in Adolescents and Adults, Plenum Press, 1983; “Social Growth in Autism: A Parent’s Perspective,” in E. Schopler and G. B. Mesibov, eds., Social Behavior in Autism, Plenum Press, 1986; and “Autism into Art: A Handicap Transfigured,” in E. Schopler and G. B. Mesibov, eds., High-Functioning Individuals with Autism, Plenum Press, 1992.