must tell it for her, today as when she was eight years old. She has learned to read, but she will never read it. Once I was naive enough to think she might; when I wrote that account of her first eight years I changed her name to Elly so she need never be embarrassed. I know now how effortful is her reading, how partial her understanding, how questionable her embarrassment. I know too that she’d never read such a story even if she could, or understand why it might be worth the telling. So I can tell it freely, in its continuing strangeness and its increasing, precious ordinariness, as Jessy enters, more and more fully, yet never entirely, the world in which we live, all of us, together.
Appendix I
Jessy s Descriptions of Some of Her Paintings
Jessy began writing descriptions of her paintings in 1980, the year she finished school, as a way of maintaining and extending her hard- won writing skills. The first descriptions depended heavily on prompts and suggestions. Gradually she learned more and more about what a viewer might need to be told; still, it was some years before she wrote one independently. She has written her descriptions independently ever since. Though she writes a draft in pencil and asks me to look it over, only occasionally do I suggest an addition or revision in the interests of clarity. These examples are her descriptions of the paintings reproduced in color in this book.
Appendix II
Definitions
DSM IV Definition of Autism
These are the American Psychiatric Association’s diagnostic criteria for Autistic Disorder, as laid out in the Diagnostic and Statistical Manual of Mental Disorders, fourth ed. (Washington, D.C.: American Psychiatric Association, 1994), pages 70–71 and 77–78.
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
1. qualitative impairment in social interaction, as manifested by at least two of the following: a. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction b. failure to develop peer relationships appropriate to developmental level c. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest) d. lack of social or emotional reciprocity
2. qualitative impairments in communication, as manifested by at least one of the following: a. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) b. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others c. stereotyped and repetitive use of language or idiosyncratic language d. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: a. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in intensity or focus b. apparently inflexible adherence to specific, nonfunctional routines or rituals c. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) d. persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
1. social interaction, 2. language as used in social communication, or
3. symbolic or imaginative play
C. 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 subthreshold symptomatology, or all of these“.
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 i 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
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.
Grand in, Temple. Thinking in Pictures and Other Reports from My Life with Autism (New York: Doubleday,
